Counselling People on the Autism Spectrum: A Practical Manual

Citation preview

Counselling People on the Autism Spectrum

of related interest The Complete Guide to Asperger’s Syndrome Tony Attwood ISBN 978 1 84310 495 7

Coming Out Asperger Diagnosis, Disclosure and Self-Confidence

Edited by Dinah Murray ISBN 978 1 84310 240 3

Asperger’s Syndrome and Sexuality From Adolescence through Adulthood

Isabelle Hénault Foreword by Tony Attwood ISBN 978 1 84310 189 5

An Asperger Marriage Gisela and Christopher Slater-Walker Foreword by Tony Attwood ISBN 978 1 84310 017 1

Asperger Syndrome and Long-Term Relationships Ashley Stanford Foreword by Liane Holliday Willey ISBN 978 1 84310 734 7

How to Find Work that Works for People with Asperger Syndrome The Ultimate Guide for Getting People with Asperger Syndrome into the Workplace (and keeping them there!)

Gail Hawkins ISBN 978 1 84310 151 2

Asperger Syndrome Employment Workbook An Employment Workbook for Adults with Asperger Syndrome

Roger N. Meyer Foreword by Tony Attwood ISBN 978 1 85302 796 3

Counselling People on the Autism Spectrum A Practical Manual Katherine Paxton and Irene A. Estay

Jessica Kingsley Publishers London and Philadelphia

First published in 2007 by Jessica Kingsley Publishers 116 Pentonville Road London N1 9JB, UK and 400 Market Street, Suite 400 Philadelphia, PA 19106, USA www.jkp.com

Copyright © Katherine Paxton 2007

All rights reserved. No part of this publication may be reproduced in any material form (including photocopying or storing it in any medium by electronic means and whether or not transiently or incidentally to some other use of this publication) without the written permission of the copyright owner except in accordance with the provisions of the Copyright, Designs and Patents Act 1988 or under the terms of a licence issued by the Copyright Licensing Agency Ltd, 90 Tottenham Court Road, London, England W1T 4LP. Applications for the copyright owner’s written permission to reproduce any part of this publication should be addressed to the publisher. Warning: The doing of an unauthorised act in relation to a copyright work may result in both a civil claim for damages and criminal prosecution. Library of Congress Cataloging in Publication Data Paxton, Katherine, 1964Counselling people on the autism spectrum : a practical manual / Katherine Paxton and Irene A. Estay. p. ; cm. Includes bibliographical references and index. ISBN-13: 978-1-84310-552-7 (pbk. : alk. paper) 1. Autism--Patients--Counseling of--Handbooks, manuals, etc. 2. Autism--Patients--Rehabilitation--Handbooks, manuals, etc. 3. Autism--Handbooks, manuals, etc. I. Estay, Irene A., 1949- II. Title. [DNLM: 1. Autistic Disorder. 2. Child Development Disorders, Pervasive. 3. Counseling. WM 203.5 P342c 2007] RC553.A88P39 2007 362.196'85882--dc22 2007002889

British Library Cataloguing in Publication Data A CIP catalogue record for this book is available from the British Library ISBN 978 1 84310 552 7 ISBN pdf eBook: 978 1 84642 627 8

Printed and bound in Great Britain by Athenaeum Press, Gateshead, Tyne and Wear

Contents Acknowledgments

Introduction

9

11

Why a counselling manual for people on the autism spectrum?

13

Organization of the manual

16

Part One: Understanding Autism – Autism Spectrum Characteristics and Cognitive Patterns 1. Autism: An Overview

21

History of autism and theoretical paradigms

21

Characteristics and implications of autism, Asperger’s, and PDD-NOS

29

Autism and comorbidity

45

2. Autistic Thinking and Autistic Logic

49

Visual thinking

50

Literal thinking

53

Self-concept

56

Theory of mind

59

Difficulty with change and shifting attention

63

Executive functioning

65

Autism, empathizing, and systemizing abilities

71

Autistic thinking and autistic logic

72

Part Two: Counselling Issues and Approaches 3. General Strategies and Modifications for Cognitive Behavioural Therapy

77

Setting up the counselling relationship

77

Basic modifications for counselling people with ASD

78

Cognitive restructuring

85

Transitions

96

Structuring choice for success

97

Problem-solving approaches

98

Self-monitoring and self-management

100

Self-talk

101

4. Depression and Treatment Approaches

103

Diagnosing depression

103

Treatment approaches for depression

106

Pharmacological approaches

106

Cognitive behavioural therapy

106

Helplessness and hopelessness: faulty attributions

112

5. Anxiety, OCD, and Treatment Approaches

115

Diagnosing anxiety on the autism spectrum

116

Cognitive behavioural interventions for anxiety

119

OCD and perseverative behaviour

133

Treatment of OCD

134

6. Relationships and Social Skills

137

Employment and employment issues

139

Marriage and intimate relationships

143

Couples strategies for ASD marriages

150

Adolescence and puberty

150

Social skill development

151

7. Stress and Relaxation

159

Meaning making and stress

160

Stress management

162

8. Emotional Expression, Identification, and Regulation

171

Emotional identification

171

Emotional expression

175

Emotional responsiveness

176

Anger management

181

9. Some Final Words and Suggestions

185

References

189

Subject Index

201

Author Index

205

List of Tables 1.1

DSM criteria for autism

33

1.2

DSM criteria for Asperger’s syndrome

36

1.3

DSM criteria for pervasive developmental disorder, not otherwise specified (PDD-NOS)

38

3.1

Cognitive restructuring chart

88

3.2

Definitions of cognitive distortions

90

3.3

Steps to consider when solving a problem

100

5.1

Safety assessment questions

125

7.1

Progressive muscle relaxation muscle group breakdown

165

8.1

Emotional scale including possible responses

174

List of Figures 3.1

Thoughts, feelings, and actions diagram

80

3.2

Emotional thermometer

81

3.3

Example of a response quality scale

82

3.4

Thoughts, feelings, and actions mobile

86

3.5

Worksheet of helpful and not so helpful thoughts

89

3.6

Examples of visual reframing

92

3.7

Sample of a choice and possible consequence chart

94

3.8

Sample self-monitoring checklist

101

4.1

Positive thoughts game scorecard

110

7.1

Stages of stress

168

Acknowledgments This manual was originally written as a program requirement for Campus Alberta Applied Psychology, Counselling Psychology Master’s program. My sincere appreciation goes to Dr. Irene Estay for all of her tireless work in supervising the original project, from which this manual has been taken. I wish to express sincere appreciation to Dr. Tony Attwood for his contribution of material and his support with the creation of this manual. Special thanks go to Roger Meyer, whose enthusiasm and feedback brought this manual to publication. I also wish to express sincere gratitude to my husband, James Paxton, whose assistance, encouragement, and never-ending support made this manual possible.

Katherine Paxton

9

Introduction Autism spectrum disorders (ASD), including autism, Asperger’s syndrome, and pervasive developmental disorders, not otherwise specified (PDD-NOS), present unique challenges to counselling professionals. Many of the features of autism spectrum disorders present a confusing picture. People on the spectrum, many of whom have average or above average intelligence, have significant impairment in social understanding that sharply contrasts with their intellectual abilities. Communication impairments are common with a strong positive correlation between verbal ability and IQ. Those with greater cognitive impairments may lack any social awareness. Regardless of intellectual ability and language fluency, emotional expression, regulation, and recognition are significantly impaired among individuals within the autism spectrum. Stereotypical behaviour, often appearing very odd, is characteristic of autism spectrum disorders (American Psychiatric Association [APA] 1994; Filipek et al. 1999). Early behavioural intervention appears to improve the prognosis of people with ASD, resulting in greater community participation and higher functioning than was possible only a decade ago (Larkin 1997; Ruble and Dalrymple 1996). The prevalence of autism spectrum disorders is on the increase (Samuels 2005). Services often disappear when people with ASD become adults. However, their difficulties do not vanish (Aston 2003). This manual is intended for counsellors who face the daunting challenge of providing counselling services to people who are on the autism spectrum, their families, families who have a member who is on the spectrum, and partners living with someone who is on the spectrum. This manual is not intended to give clinicians the tools directly to treat

11

12

Counselling People on the Autism Spectrum

the core features of autism, nor is it intended to be a manual of behavioural approaches to teach people on the autism spectrum new behavioural skills, although skill development will occur. The focus of this manual is on counselling techniques that work with emotions, cognitions, meaning making, and trying to cope with living on the autism spectrum, or living with someone who has ASD. This manual contains information for counsellors and clinicians to develop tools to help people on the autism spectrum cope with their emotions, anxieties, and confusion regarding the confusing world that surrounds them. Included are research-based strategies and adaptations to current counselling technology to better meet the needs of persons on the autism spectrum. This writer has found these adaptations and strategies to be useful and effective when working with people who have an autism spectrum disorder, their support people, and their families. These tools will assist the counsellor to work with the families and partners of people on the spectrum, to facilitate greater understanding of why people on the spectrum do the things they do, and facilitate improved overall functioning of the client and their families. In addition, many of the techniques will also be useful for use with people who share some of the characteristics of those on the autism spectrum. A cognitive behavioural framework has been utilized for this manual, as there has been evidence that this is an effective approach with persons on the autism spectrum, most particularly those who have welldeveloped abilities to communicate and function at a higher intellectual capacity (Attwood 1998, 2003; Heflin and Simpson 1998). Modified cognitive behavioural approaches are also effective with people who have mental retardation and counselling is effective with people who have the cognitive functioning equivalent to a six- or seven-year-old (Kellner and Tutin 1995), which implies that they would also be applicable for persons with ASD who also have a mental handicap, providing that the person functions at the cognitive age of at least six. It is most likely that people who are on the autism spectrum who seek counselling services will be verbal; it is to these people that this manual is primarily directed. It is likely that those with a lower cognitive functioning will be referred for treatment using an applied behaviour analysis approach, and not for counselling.

Introduction

13

Much of the research regarding cognitive behavioural interventions has been conducted on children and youth who are on the autism spectrum (Aston 2003; Attwood 1998, 2003), but these interventions can also be adapted and used in working with adults with some modification. Attwood (1998) discussed how the logic inherent in a cognitive behavioural approach is well suited to people who have an autism spectrum disorder, as these people often respond to logic, although the logic that people with ASD exhibit may be somewhat odd, as compared to typical individuals. This has been confirmed in this writer’s experience. Cognitive behavioural approaches are quantifiable and often concrete, which in this writer’s experience facilitates the demonstration of effectiveness. The purpose of this manual is to help counsellors to create meaning to the autistic logic and to provide ways to work with this population in an effective manner. Case studies presented in this manual are composites of different people with whom this author has worked. Any resemblance to a specific and actual individual is unintentional, as each case study presents a mythical person who shares characteristics of several people who are on the autism spectrum. All names are fictitious.

WHY A COUNSELLING MANUAL FOR PEOPLE ON THE AUTISM SPECTRUM? Autism is a lifelong condition with symptomology that can be improved through specific instruction and behavioural technology (Green 1996; Rogers 1998a; Smith 1996). With the improvement in prognosis available through the current teaching technologies, people with autism are becoming more able and are more fully participating in mainstream communities (Ruble and Dalrymple 1996). As Aston (2003) and Larkin (1997) have noted, there are more psychological support services for parents who have children on the spectrum than there are for adults. Larkin commented on the prevalent perception of autism being a childhood disease, and services for people who are on the autism spectrum may be terminated or severely reduced when they become adults. However, autism spectrum disorders do not end with reaching the age of majority. Having a developmental disability implies that you will

14

Counselling People on the Autism Spectrum

not reach the same stage of development at the age of the onset of adulthood as that of your more typical peers. The prevalence of persons on the autism spectrum has been estimated as being 0.5 per cent (Rutter 2005), and these numbers are increasing (Samuels 2005). What is left unsaid is that these individuals will grow into adults who will continue to be members of mainstream communities, may find employment, and may begin families of their own. There is a growing body of literature that suggests that persons on the spectrum struggle with issues of anxiety and depression (Ghaziuddin, WeidmerMikhail and Ghaziuddin 1998; Lainhart 1999; Prestwood 1999). In addition, those with mental retardation are at a higher risk for physical, emotional, and sexual abuse that will require counselling services (Cutler 2001). It is likely that many therapists and counselling professionals will encounter persons on the spectrum throughout their career, particularly as children become fully participating adults in mainstream communities. It is this writer’s goal that this manual will provide tools for working with the emotional needs of these individuals. Currently, persons on the autism spectrum may be underrepresented as clients in the counselling profession, although they do seek professional help (Aston 2003; Attwood 1998; Hare and Paine 1997; Jacobsen 2003; Meyer 1999). They are also underrepresented in the psychotherapy and counselling literature (Stoddart 1999), though notably present in the behavioural therapy literature. Perhaps the paucity of information can be attributed to professional perception of this population as having little to no emotion, as well as challenges stemming from aspects of symptomology of the autism spectrum, and the use of behavioural measures as diagnostic criteria (APA 1994). Behavioural approaches have been primarily used as treatment approaches in autism to address the core areas of deficit and behavioural issues. Behavioural approaches are seen as the technology of choice when working with autism spectrum disorders (Fombonne 2003; Green 1996; Rogers 1998a; Smith 1996). While behavioural interventions have been at the forefront of treatments for individuals with ASD, the emotional issues of these persons have not been given much attention (Stoddart 1999).

Introduction

15

There are always emotional issues with which the children with serious impairments struggle. Without a high level of staff training in development (normal and disordered) and clinical work, emotional issues may be easily missed and, therefore, not addressed. (Ruberman 2002, p.265)

Failure to address these emotional issues is a disservice to this population. It is likely that emotional issues, left unaddressed, can negatively impact mental health. What is clearly indicated above is the need for more than just a behavioural approach with persons on the autism spectrum. Behavioural interventions are not known for their effectiveness in dealing with emotional issues. Medication is still being explored in this population with mixed results (Attwood 1998; Smith 1996). Many of the medications that have proven effective with the general population have different results with those on the autism spectrum, often with serious side effects. However, with the current focus on working with people on the autism spectrum from a behavioural perspective, emotional issues may not be recognized or addressed. Certainly there are many manuals and textbooks offering behavioural intervention strategies, but little published offering suggestions on how to work with emotional and cognitive issues with persons on the autism spectrum (Attwood 2003; Hare and Paine 1997). From what is reported in the literature, people who are on the autism spectrum have no wish to be cured to become like people not on the autism spectrum; they wish to be helped while maintaining their identity (Meyer 1999). Persons on the spectrum present as odd and may be misunderstood by professionals who are unaware of the autism spectrum characteristics (Attwood 1998; Jacobsen 2004; Shuttleworth 1999). Aston (2003) reported that about 40 per cent of the couples with at least one partner with Asperger’s syndrome indicated that they were dissatisfied with previous counselling. The main reason for dissatisfaction was that the counsellor did not understand autism spectrum disorders. There may be the perception that persons on the autism spectrum do not experience emotion because they may not display emotion in the socially acceptable way that mainstream society is accustomed to. A common description of people on the autism spectrum is that of having a flat affect (Attwood

16

Counselling People on the Autism Spectrum

1998; Jones, Zahl and Huws 2001; Ruberman 2002). Yet people on the autism spectrum have higher rates of depression and anxiety than people who are not on the spectrum (Ghaziuddin et al. 1998; Lainhart 1999). Counsellors and clinicians may find that their talking and insightoriented therapies may not be effective with these clients (Jacobsen 2003), but may not find other interventions that are better suited for working with them. The intent of this manual is to fill that gap and provide counsellors and clinicians with the tools and strategies to work with people on the autism spectrum in ways that can effectively address the emotional, relational, and cognitive issues that they bring to the counselling session.

ORGANIZATION OF THE MANUAL This manual is divided into two parts. Part One, Chapters 1 and 2, covers background information about the autism spectrum. These chapters are intended to provide a solid base from which to work, and are by no means exhaustive of the information that is available. This manual is not intended to be a comprehensive exposition of what we know about autism; it is more like a condensed survival guide. For those counsellors who are experienced with people on the autism spectrum, these chapters will provide a review, although there may be some information that is novel to the experienced clinician. Most experienced counsellors and clinicians who are familiar with working with people on the autism spectrum may be tempted to skip into Part Two immediately. We suggest that you skim through these chapters with an eye for new information. A complete reading may not be necessary. Chapter 1 provides an overview of autism spectrum disorders (ASD). The first part of Chapter 1 discusses the theories of autism and their history, including information regarding the aetiology of autism, the neurological differences, prevalence, some issues regarding aging, and the characteristics of autism spectrum disorders. Chapter 2 provides a brief discussion on different aspects of cognition found in people who are on the autism spectrum, and some of the implications of autistic thinking patterns. Here the focus is on getting

Introduction

17

into the mind of someone on the autism spectrum, and to begin to understand why they are so confusing to people not on the spectrum. The remaining chapters comprise the Part Two of this manual, and discuss specific issues and empirically supported treatments. Adaptations of general counselling strategies are covered in Chapter 3. This is where general counselling modifications and strategies are discussed. Chapters 4 through 8 focus on specific issues and their relevant counselling strategies and modifications. Chapter 4 discusses depression and modified counselling strategies as relating to an individual on the autism spectrum. Chapter 5 explores anxiety and obsessive-compulsive issues; counselling strategies modified to work with individuals who have autism spectrum disorders are presented. Included in this chapter are modifications to address autistic perseveration. Chapter 6 explores the social arena in more depth. Social difficulties and the implications of difficulty with social interaction are explored, including interpersonal relations and employment social skills. Social skill development and social strategies are examined. Chapter 7 addresses stress reduction, including modifications for stress reduction strategies for individuals with ASD. Chapter 8 concludes with counselling techniques and strategies to address emotional regulation. Chapter 9 concludes the manual with some quick rules of thumb about working with people with autism spectrum disorders.

Part One: Understanding Autism – Autism Spectrum Characterisitics and Cognitive Patterns

CHAPTER 1

Autism: An Overview The intent of this chapter is to provide therapists with basic information regarding autism. It is beyond the scope of this chapter to provide a complete understanding of autism. In fact, in order to understand the autism spectrum the reader should go to a variety of sources. A good understanding can be gained from reading first-hand accounts of autism (see Grandin 1996; Willey 1999). There are also excellent resources that provide detailed overviews of autism, pervasive developmental disorder, not otherwise specified (PDD-NOS), and Asperger’s syndrome (AS) (Aston 2003; Attwood 1998; Jacobsen 2004; Janzen 1996; Quill 1995). This writer will attempt to provide some history of the psychological theoretical underpinnings of autism, a basic understanding of the aetiology of autism, and the characteristics of autism spectrum disorders (ASD).

HISTORY OF AUTISM AND THEORETICAL PARADIGMS It is sometimes helpful to know the history of autism and the theory behind it in order to gain an understanding of some of the myths and perceptions that have come to us in this millennium. Autism and Asperger’s syndrome were both described within a year of each other. Leo Kanner first described autism in 1943 (Fombonne 2003; Janzen 1996) at about the same time as Hans Asperger (in 1944) described the syndrome to be named after him (Attwood 1998; Perlman 2000). The word “autism” was initially used by Bleuler to describe the onset of schizophrenia, and contributed to the confusion between childhood schizophrenia and autism

21

22

Counselling People on the Autism Spectrum

(Fombonne 2003). Asperger’s work went largely unnoticed until Wing published a paper based on 34 cases in 1981 (Perlman 2000).

Psychoanalysis of autism: refrigerator mothers and ambivalent attachments Treatment in the early 1950s and 1960s evolved from the notable difficulties that children who had autism experienced with social attachment and emotions. Post-World War II child psychiatry attributed autism to attachment disorders in the mother and child relationships (Fombonne 2003), or by exposure to environments that were lacking in emotional warmth and enjoyment (Jacobsen 2003; Koegal, Koegal and McNerney 2001). This created a professional perception of autism as being caused by poor mothering, which may still be held today despite medical advances that clearly indicate a primarily genetic aetiology (Fombonne 2003; Smith 1996). Psychodynamic theories of autism became prevalent during this time (Koegal et al. 2001), led by the work of Bettelheim (Quill 1995). Bettelheim perceived autism as being a disorder caused by “refrigerator mothers” (Fombonne 2003, p.503) who were unable to form emotional bonds with their children. Autism was seen to be caused by parental rejection, specifically the child’s emotional withdrawal and reaction to the parents’ lack of emotional attachment. In 1963 Bettelheim as quoted in Henley (2001) stated: What is the difference, then, between separation anxiety – which is man’s basic anxiety – and the anxiety that leads to autistic withdrawal? I believe it is the infant’s correct reading of the mother’s emotions when she reappears: that the reunion is unwelcome to her: that she would rather it didn’t happen. This is when separation anxiety turns to the certainty that one’s nonexistence is wished for. With it, every separation becomes an experience of possible desertion and hence annihilation, a fate that only desperate measures may possibly ward off. (Henley 2001, p.223)

This initial professional perspective of parents of children who are on the autism spectrum as being loveless, cold, and unwelcoming to their child is

Autism: An Overview

23

considered erroneous at present (Quill 1995). This misperception was believed until fairly recently. This writer believes it is important for a counsellor working in the field of autism to be aware that some of the messages provided by physicians, and perhaps other professionals, may still be based on the old paradigm of poor mothering. This psychoanalytical perception of autism as an attachment disorder and anxiety over annihilation continues to this day, and is one framework of modern psychoanalysis of autism (Alvarez 1992; Henley 2001; Jacobsen 2004; Maiello 2001; Prado de Oliveira 1999). Psychoanalysis is well represented as a counselling approach for autism, although it has been used with persons on the spectrum with limited success (Henley 2001). However, there is some discussion that indicates that psychoanalysis of children on the autism spectrum is harmful (Gerland 1999; Sainsbury and Gerland 1999; Smith 1996). Psychoanalysis today continues to have a dim view of the biological aetiology of autism, preferring to look for answers in family psychodynamics and personal or family trauma (Maiello 2001; Prado de Oliveira 1999). Treatment for these children was aimed primarily at emotional recovery and addressing attachment issues and parental trauma factors (Henley 2001). However, psychoanalytical treatments did not show dramatic recovery from autism, or good results (Ghaziuddin, Ghaziuddin and Greden 2002), as treatment length could range from one and a half years to about twenty (Alvarez 1992). Therapists began to search for more effective ways to treat autism that would show results more rapidly. In light of this, behaviour therapies were explored (Quill 1995).

Behavioural interventions and autism Behaviour therapies have been shown to be very effective in teaching new skills and behaviours for people on the autism spectrum and are the most common treatment. Behavioural interventions are used to address the core areas of autism and to teach new skills (Fombonne 2003; Green 1996; Janzen 1996; Rogers 1998a; Smith 1996). Behavioural approaches are very effective in the areas of skill development and behavioural change, but address only the symptoms of autism, and not the core deficits. However, behaviour change and adaptive skill development are

24

Counselling People on the Autism Spectrum

key areas to improve the quality of life of both children and adults on the autism spectrum. There is little doubt that behavioural interventions are effective (Green 1996; Rogers 1998a, 1998b). The main issues with behavioural technologies are that they are powerful tools of compliance (Lovett 1997) and have sometimes been described as an approach that treats the symptom and not the person. Cognitive and emotional issues that may be “driving the behaviour” (Renna 2004, p.18) are seldom addressed by behavioural interventions. Aspects of thinking and feeling were often left unexplored, despite the fact that people with autism spectrum disorders have difficulties with understanding their environment and with emotional regulation. Understanding the reasoning or purpose behind a behavioural request may be left unexplored, or may be meaningless to someone with ASD. Thus, the request generates confusion. Why would someone do a meaningless thing? Enhancing meaning and understanding combined with behavioural change forms the basis of the cognitive behavioural approach. Attribution of meaning to a situation will affect behaviour (Attwood 1998). Behavioural approaches may prove to be ineffective with some of the higher functioning people with ASD, as antecedent and consequence management may not address the ASD individual’s perception or interpretation of the situation. For many high functioning people, reinforcement and consequence driven behavioural approaches will be resisted as they may perceive the treatment “as being forced on them” (Heflin and Simpson 1998, p.200). However, once a practical understanding is reached regarding the reason for change, people on the autism spectrum are often more amenable if the meaning makes sense to them, and they can see the utility of changing their behaviour (Aston 2003).

Aetiology The aetiology of autism is complex. There are genetic factors that appear to cause autism, and environmental insults that can also lead to autism. For a small percentage of people, no cause has been identified (Rutter 2005). Autism is usually diagnosed during childhood, although it is not uncommon for people who have high functioning autism (HFA) or

Autism: An Overview

25

Asperger’s syndrome to be diagnosed later in life (Aston 2003; Attwood 1998; Janzen 1996).

Non-genetic factors Several non-genetic factors appear to play a role in the aetiology of autism, including the use of prescribed drugs such as thalidomide or valproic acid use during pregnancy. Recreational drug or alcohol use during pregnancy seems to enhance the risk of the fetus developing autism. Also, there seems to be an established link between congenital rubella and autism. Research has not proved that thermisol, a mercurybased component of the measles, mumps, and rubella (MMR) vaccination, leads to autism, despite the controversy, although there is some speculation that children who become autistic after the MMR vaccine may be more sensitive to toxins such as mercury. To date, however, no conclusive link has been found (Rutter 2005).

Genetic inheritance Twin studies have shown a rate of 60 per cent of twins both having autism when the twins are identical. This is compared to a 5 per cent rate of fraternal twins. When examining identical twins where only one has autism, the rate of the other twin being somewhere on the milder side of the spectrum is much higher than the rate of fraternal twins, showing strong heritability: “Taken together with the population base rate for autism, this implies that the heritability or underlying genetic liability is about 90% – the highest figure among all multifactorial child psychiatric disorders” (Rutter 2005, p.232). Families with one member diagnosed on the autism spectrum report a 6 per cent rate of autism, much higher than the 0.5 per cent rate in the general population. There are between 3 and 12 susceptibility genes for autism that act in a synergistic manner that produces the variation of the autism spectrum (Rutter 2005).

Neurological differences The ability of modern technology to unlock the mysteries of the brain has shown that there are several differences in the brains of those who are on the autism spectrum, as compared with those who are normal. Magnetic

26

Counselling People on the Autism Spectrum

resonance imaging (MRI) studies indicate that people with autism tend to have larger brains overall, larger cerebellar hemispheres, parietotemporal lobes, and amygdala, with a reduced corpus callosum (Brambilla et al. 2003). The limbic system, the seat of emotion, is reported to be impaired (Rogers 1998b). People on the autism spectrum do not use the fusiform face gyrus, the area of the brain that is associated with facial recognition, when looking at and identifying faces (Schultz 2005). Schultz suspects that the differences in facial processing may explain the difficulties in recognizing facial emotions. It may also explain why people on the autism spectrum may not acknowledge friends and acquaintances when they pass them on the street or in the hall. Cerebellum abnormalities are suspected as contributors to the behavioural and cognitive phenotype of autism. The cerebellum is crucial in learning motor sequencing and adaptation learning, and may explain why people on the autism spectrum do not accommodate well to change (Mostofsky, Goldberg, Landa and Denckla 2000). There appears to be a hemisphere reversal of the brain areas that are involved in language listening, from the normal left hemisphere to the right hemisphere in autism. Left dominance for language is found in less than 5 per cent of right-handed individuals with autism, and in more than 95 per cent of right-handed people who are not on the autism spectrum (Muller et al. 1999). As Euro-American educational systems highly value verbal learning, people on the autism spectrum who have clear brain abnormalities regarding language are at a disadvantage. Nonverbal auditory patterns are also unusual, with reduced bilateral superior temporal and cerebellar activities, and unusual activation of the left anterior cyngulate gyrus. This demonstrates that the difficulty with interpreting nonverbal communication lies in the difference in brain physiology. The anterior cingulated gyrus is normally implicated in cognitive-attentional and emotional functions, and could be related to auditory hypersensitivity found in autism (Muller et al. 1999). Müller, Cauich, Rubio, Mizuno and Courchesne (2004) reported abnormal motor organization, with diffuse cerebral activation, instead of the more focused normal activation in the ipsilateral anterior cerebellum. Activation patterns for simple motor patterns showed a higher scatter

Autism: An Overview

27

than that found in the control sample. People on the autism spectrum often have difficulty with motor planning, which can be attributed to these differences. People who have autism tend towards having higher brain volume than that of the normal population. This increase is not present at birth, but brain volume increases after the age of two. This suggests that the normal neural pruning which occurs during childhood does not occur in the usual fashion for those who are on the autism spectrum. In contrast, the corpus callosum, which is the brain structure that provides the communication pathway between the two hemispheres, specifically the posterior midsagittal corpus callosum, appears smaller, suggesting that information may not travel between hemispheres as rapidly as in the normal population (Palmen and van Engeland 2004).

Prevalence The rate of schoolchildren diagnosed with autism has increased exponentially. In the 1970s the rate of autism was less than 3 in 10,000 children, while in the 1990s the rate was about 30 in 10,000 (Blaxil 2005). The incidence of the larger autism spectrum disorders are between 30 and 60 cases per 10,000 (Rutter 2005), making autism spectrum disorders “more prevalent in the pediatric population than cancer, diabetes, spina bifida, and Down’s syndrome” (Filipek et al. 1999, p.440). This increase is accounted for by actual increase in numbers, as well as better diagnostic tools and wider diagnostic criteria, encompassing the range of the autism spectrum (Samuels 2005). There is a prevalence of males to females of 3:1, with mental retardation occurring in about 80 per cent of the cases (Fombonne 1999). About one in five first-degree relatives have a much milder variant of autism. Autism appears to affect all social classes and ethnicities equally (Rutter 2005).

Lifespan and adult outcomes There is agreement that people do not “grow out of their autism” (Ruble and Dalrymple 1996), and social deficits tend to persist. General consensus is that outcome is poor, as the core deficits of autism do not go away with age (Howlin 2000), although they will improve (Seltzer,

28

Counselling People on the Autism Spectrum

Shattuck, Abbeduto and Greenberg 2004). Often supports are pulled away when a person appears to be doing well. Failure to continue to do well is frequently the result. There is a delicate balance between support needs and community success. Part of the support needed is consistency and familiarity in day-to-day life (Ruble and Dalrymple 1996). Between 10 and 20 per cent of people with severe forms of autism have good outcomes by adolescence, perhaps holding a job and having good language skills. The prognosis is much better for those who are less severely affected. It is reported that between 1 and 2 per cent of individuals labelled autistic are able to live independently and that one of the greatest predictors of good outcome is an IQ above 70 and some form of communicative speech before the age of six (Stein et al. 2001).

Aging issues People with ASD enjoy lifespans that are comparable to their peers who are not on the spectrum (Howlin 2000), and will encounter the loss of significant persons in their lives, as do typical individuals. However, people on the autism spectrum may have more difficulty adapting to the changes. Loss of a significant other may mean changes in living arrangements, routines, and all of the familiar things that enable a person with ASD to function in mainstream society. In a sense, the person with ASD may lose their entire familiar world with the death of a parent or significant other (Botsford 2000). For people on the autism spectrum, these changes can be extremely challenging and debilitating, as the people who know best how to support the person are gone. A good example as to how changes can be extremely challenging was demonstrated in the movie Rainman (Molen and Levinson 1988), where Raymond had to suddenly live with his younger brother. In the movie, simple changes like having the wrong toothbrush upset Raymond to the point where he could no longer cope. People with ASD do not always express emotions in the same manner as those who are not on the spectrum. Grieving may go unrecognized, or may be dealt with in an unusual manner. Communication difficulties will negatively affect the grieving process and behaviours may surface as ways to cope with grief. Social grieving rituals may be unfamiliar to people on the autism spectrum. For many, odd behaviours may surface, such as

Autism: An Overview

29

self-stimulatory behaviours (rocking, flapping, spinning) as a result of feeling anxious. These behaviours can cause distress for other family members who are dealing with their own grief (Aston 2003; Attwood 1998; Botsford 2000).

CHARACTERISTICS AND IMPLICATIONS OF AUTISM, ASPERGER’S, AND PDD-NOS Autism ranges from the more severe Kanner-type autism to people who are very intelligent and have a milder variation called Asperger’s syndrome, or Asperger’s disorder. A different and mildest variant of autism is pervasive developmental disorder, not otherwise specified (PDD-NOS; Attwood 1998; Janzen 1996; Quill 1995). Autism is considered a spectrum disorder, as there is a range of autistic symptomology with no clear divisions between the different types of autism (Cash 1999; Gillberg and Billstedt 2000). Although there are some who would contest that Asperger’s and high functioning autism are different disorders, for the purposes of this manual they will be considered as part of the broader autism spectrum.

Diagnosis on the autism spectrum Autism spectrum disorders are usually diagnosed in the first few years of life, though later diagnoses are not uncommon (APA 1994; Attwood 1998; Filipek et al. 1999; Janzen 1996). Often diagnosis occurs when the child enters school, as the situation is often more confusing and demanding. In some cases, adults get diagnosed after their child receives a diagnosis (Aston 2003; Quill 1995; Willey 1999). Autism spectrum disorders, including PDD-NOS and Asperger’s syndrome, share features of communication impairments, social impairments, imaginative impairments, difficulty interpreting and/or expressing emotions, restricted and/or stereotypical patterns of behaviour, and uneven development. People diagnosed with PDD-NOS have less of these characteristics than those with Asperger’s, and those with Asperger’s have fewer characteristics than those with autism (APA 1994). Persons on the autism spectrum characteristically have sensory difficulties, which impact their ability to relate to their environment (Attwood

30

Counselling People on the Autism Spectrum

1998; Filipek et al. 1999). A portrayal of a classic Kanner-type autistic is found in the movie Rainman (Molen and Levinson 1988). Grandin (1996) and Willey (1999) are examples of people who have high functioning autism and Asperger’s syndrome, respectively.

Accepting the diagnosis of ASD Dr. Tony Attwood (2006) has identified four common reactions to receiving a diagnosis of ASD in children and adults. These are: “reactive depression” (Attwood 2006, p.34), escape into imagination, denial and arrogance, and imitation. For those who tend towards internalizing thoughts and feelings, a reactive depression may occur. Often this is accompanied with the perception that having a diagnosis of ASD means that the individual is defective in some way. Those who internalize may withdraw socially, and present with symptoms common to depression, including suicidal ideation. For some individuals with ASD, the internalizing of the diagnosis leads to an escape into fantasy. In the fantasy worlds they create, they are successful in all areas, including social. Often this is combined with an abnormal interest in other countries or fantasy literature. For some, this fantasy escape provides material for writing fiction. In some cases, this escape into fiction appears similar to lying, where the individual tells fictional stories in which the individual is the hero; stories about how the individual was successful in a situation. This often is combined with the individual truthfully identifying their actions when confronted with a specific situation. In this case, the lying was not to avoid responsibility for something that the individual has done; it is a fantasy creation of what the individual would like to have happened. On occasion, this escape into fantasy is seen as being delusional. This writer has experienced situations with people with an ASD who have visualized the fantasy interpretation of a real-life situation so often that they can no longer distinguish between the fantasy version and what actually happened. This is different from lying, as the person loses awareness that the fantasy version is not truthful. They can realize what really happened with some reality testing. Often a question asking them if the event really happened that way, or if their version is the way that they would have liked to have acted, can help them to admit the reality.

Autism: An Overview

31

Some individuals who receive the diagnosis of having an autism spectrum disorder externalize their feelings and thoughts. They may deny the diagnosis, and perceive the difficulty to lie with other people, not with themselves. This often results in arrogance and acting as if the individual is omnipotent (Attwood 2006). These individuals may engage in coping strategies that would create a perception of always being correct and highly intelligent. These individuals may resort to social domination and intimidation to mask social deficits. They seek to control social interactions as a strategy to appear socially competent. Negative misreading of others’ actions often leads to hostile reactions to others’ behaviours as being deliberately malicious. Often they retaliate in these situations, or seek revenge. Discussion and argument seldom changes their perception of the situation. A successful coping strategy is that of imitation of typical peers. This may be referred to as passing as normal. An interest in drama and drama classes may develop. Social situations may be re-enacted within the safety of the home as a learning tool. Difficulties may arise when the social models are inappropriate, or when the person is identified as something of an impostor, or not quite authentic (Attwood 2006).

Explaining the diagnosis When explaining a diagnosis of an autism spectrum disorder, it is helpful to highlight that this is a spectrum disorder, which means that there are varying degrees of autism. It is helpful to discuss that there are some benefits to having an autism spectrum disorder, as well as some difficulties. This may be highlighted through use of a chart of the individual’s strengths that are related to having ASD, as well as a list of some of the areas that are difficult. Attwood (2006) refers to this strategy as “Attributes Activity” (p.691). This writer has used a computer analogy to explain that individuals with ASD are different, but not faulty or defective. They have a different operating system, which gives them certain strengths and certain areas where a computer that does not run an autism operating system performs better. One parent this writer knows describes the difference as running an Asperger (AS) operating system instead of a neurotypical (NT) operating system.

32

Counselling People on the Autism Spectrum

Characteristics of autism Autism consists of three major areas of difficulty (see Table 1.1): communication deficits, social deficits, and stereotypical behaviour (APA 1994). Both receptive and expressive language are affected, impacting social language as well (Maurice 1996; Quill 1995). Stereotypical behaviour can include behaviours such as hand flapping, twirling, pacing, and rocking (Janzen 1996). People with autism range from those who are severely impaired with significant mental handicaps to those who have average or above average intelligence. The more severe forms of autism, which include stereotypical behaviours, and more severely impaired communication, often associated with a mental handicap, are frequently referred to as Kanner-type autism (Filipek et al. 1999; Fombonne 1999).

Relative challenges As mentioned earlier, receptive and expressive communication is affected with varying degrees of impairment, with those on the higher functioning end of the spectrum being least affected. Most frequently receptive language is stronger than expressive. They have difficulty with expressions of speech (colloquialisms) and are very literal in their interpretation of language (Happé 1995; Noens and van Berckelaer-Onnes 2004). People with autism have difficulty shifting their attention. There is difficulty in shifting attention rapidly and smoothly from one thing to another. This rapid attention shifting is essential in social conversation, particularly if there is more than one conversational partner involved. The inability to switch easily from one subject or activity to another makes it difficult for someone to transition from one activity to another. Difficulty with switching attention impacts the ability to switch sensory modalities as well. It may be difficult for some people on the autism spectrum to switch between seeing and hearing, or hearing and touching, for example. Activities that involve all the senses at once can be challenging (Attwood 1998; Tsatsanis 2004).

Autism: An Overview

33

Table 1.1 DSM Criteria for Autism Must have at least six characteristics, including: Impairment in social interaction, shown by two or more of the following: Marked impairment of nonverbal communication behaviours, such as facial expression, eye contact, gestures and body language

Does not develop relationships with peers appropriate to stage of development

Does not seek to share interests or achievements with others

Does not reciprocate emotional and social cues

Communication impairments, shown by one or more of the following: Lack of, or delay in acquiring, spoken language, with no attempt to use different communication systems in its place

Impaired ability to start and uphold reciprocal conversation

Use of idiosyncratic or stereotypical language or repetitiousness

Lack of spontaneous social play and imaginative play appropriate to stage of development

One or more of the following characteristics of limited and stereotypical patterns of behaviour: Preoccupation with a particular limited pattern of interest to an unusual degree of intensity or with an unusual focal point

Tends to have rigid and nonfunctional routines and inability to cope with change

Preoccupation with components of objects

Stereotypical and repetitive motor patterns

Must also have delays or abnormal functioning (evident before 3 years of age) in social interaction, communicative language, or imaginary play. Note: Adapted from the Diagnostic and Statistical Manual of Mental Disorders, 4th edn (APA 1994).

34

Counselling People on the Autism Spectrum

Case study: Thought stew People with autism have great difficulty organizing their thoughts, their possessions, knowledge and information, and their actions. Jacob, a young adolescent who had autism, described his thoughts as “things that float in stew. When you try to get the meat, bits of vegetables and other stuff gets in the spoon, stuff that you may not want. And, sometimes, you go for the meat but you don’t get any on the spoon.” Jacob struggled with recalling specific bits of information, often producing an “information stew” of unrelated bits of information that were brought to the forefront during the process of recall. Jacob often complained that his thoughts came out too rapidly, often more rapidly than he could express or write down. When others listened to Jacob, he made little or no sense, and his line of thinking was impossible to follow. Some of his peers found this very disturbing. Paired with the difficulty in self-organization of thought comes a difficulty of knowing what information is relevant when learning new things. These people may attempt to learn all the information in a chunk, or may learn unrelated bits of information, unless specifically told what is important and how it is linked together. They cannot weigh the importance of each piece of information, nor how it may relate to a central theme. Learning is often hindered by cognitive inflexibility where new information may not supersede old information (Janzen 1996; Teunisse, Cools, van Spaendonck, Aerts and Berger 2001; Tsatsanis 2004). Motor difficulties are characteristic of autism, as are attention deficits. Impulse control can be weak. Imitation deficits, including motor imitation, are also common, particularly in children (Williams, Whiten and Singh 2004).

Relative strengths Although there are many deficits, there are some strengths that people on the autism spectrum may have. People with autism are visual learners and may have extraordinary visual discrimination skills, often noticing details that most people miss. Often their visual spatial abilities are above average

Autism: An Overview

35

(Grandin 1996; Tsatsanis 2004). Some may have the ability to illustrate what they have seen with extraordinary precision. One study validated that children (and probably adults) on the autism spectrum are primarily visual thinkers, and do not visualize things differently from what they have seen in real life during day-to-day doings (Frith and Happé 1999). With this in mind, this writer would postulate that television images may act in a similar fashion, being visualized much in the same way as day-to-day reality, perhaps blurring the boundaries of reality and television. Aston (2003) commented that some of her clients appeared to be learning social skills from the television. This author wonders how accurately people on the autism spectrum can distinguish reality from fantasy when they have seen it on television. It has been this writer’s experience that many people who have autism spectrum disorders have great difficulty distinguishing between what is Hollywood glitz and glamour, and what is more representative of everyday life. Recall of rote memory learning is a particular strength, and can be used to help teach new material (Tsatsanis 2004). This strength in rote learning makes unlearning something very difficult, and, in this writer’s experience, near impossible. When teaching someone on the autism spectrum, this writer recommends that the individuals are instructed in the correct method the first time something is taught, as it will be very difficult to change how they complete the activity at a later date. However, it is this writer’s experience that sometimes reframing a new way of doing things as a rule change due to growing older can be helpful. Framing a change as a way that adults (or people over 40) are supposed to do it can sometimes help someone with an autism spectrum disorder accommodate to the change.

Characteristics of Asperger’s syndrome People with Asperger’s syndrome share the social difficulties and some of the other symptomology of autism (see Table 1.2), such as stereotypical behaviour or limited skill repertoire, but do not have the same language difficulties. Language acquisition at an early age is a deciding factor for a diagnosis of Asperger’s. Language acquisition is often odd or atypical. Their vocabulary is often advanced for their age, and they have good

36

Counselling People on the Autism Spectrum

Table 1.2 DSM Criteria for Asperger’s syndrome Impairment in social interaction, shown by two or more of the following: Marked impairment of nonverbal communication behaviours, such as facial expression, eye contact, gestures and body language

Does not develop relationships with peers appropriate to stage of development

Does not seek to share interests or achievements with others

Does not reciprocate emotional and social cues

Stereotypical, limited, and repetitive behaviour patterns, and interests, shown by one or more of the following: Preoccupation with a particular limited pattern of interest to an unusual degree of intensity or with an unusual focal point

Seemingly rigid adherence to specific routines that appear to be nonfunctional

Stereotypical and repetitive motor patterns

Preoccupation with components of objects

These factors bring about impairment in social, occupational, or other kinds of functioning. There is no significant delay in language, cognitive development, and acquisition of self-help skills and adaptive behaviour apart from social skills. Note: Adapted from the Diagnostic and Statistical Manual of Mental Disorders, 4th edn (APA 1994).

verbal memory. They tend towards being higher functioning and have normal to high intelligence and may have excellent logic skills, although the logic may be based on faulty assumptions (Aston 2003; Frith 2004; Perlman 2000; Tsatsanis 2004). Often people with Asperger’s develop coping strategies that can hide the social difficulties they experience, and can present as not having any disability. Often they can integrate socially, although they may appear shy, aloof, awkward, overly friendly, or too talkative. It is this ability to cope and present well that confuses parents and professionals, as well as delaying or hindering recognition that these people require support or help (Portway and Johnson 2003; Willey 1999).

Autism: An Overview

37

Problems with personal organization and time management are common. Individuals with Asperger’s syndrome have a preference for fixed, predictable routines and highly structured environments, and can experience a great deal of distress when there is unexpected change, even when the change appears minor. Often it is the other-than-expected change that violates previous expectations that causes the most difficulty. They often have great difficulty coping when something they expect to happen does not happen, or happens differently from what they planned (Sofronoff, Attwood and Hinton 2005; Tsatsanis 2004). Social isolation is a problem, and can set the stage for childhood bullying. Children and adults with autism spectrum disorders tend to be socially isolated, a characteristic trait that bullies seek in their intended victims. Children with autism spectrum disorders do not have the social skills necessary to cope successfully with bullying, and may engage in retaliatory behaviour, aggression, or social withdrawal (Attwood 2006). People with Asperger’s syndrome have difficulty with eye–hand and visual motor coordination, often resulting in teasing during school years due to their difficulty with sporting and physical activities (Attwood 2004; Portway and Johnson 2003).

Girls with Asperger’s syndrome Girls with Asperger’s syndrome are supposed to occur in one out of four cases, but the real-life occurrence is much more rare, at about one in ten cases. Attwood (1999) explains that this may be due to girls being more eager to learn and quicker to understand concepts than boys, masking their disability to some extent. Asperger mothers, Attwood notes, have more empathic abilities towards their children than Asperger fathers, perhaps an indication that the female tendency towards greater empathic abilities acts as a buffer for Asperger women and girls. Seltzer et al. (2004) report that females who have autism spectrum disorders are more likely to be more severely impaired.

38

Counselling People on the Autism Spectrum

Characteristics of pervasive developmental disorder, not otherwise specified Pervasive developmental disorder, not otherwise specified (PDD-NOS) is used as a diagnosis when the individual fits some but not all of the criteria for autism or Asperger’s syndrome, when onset is late, or when the person would be diagnosed with atypical autism (see Table 1.3). Often diagnosis of PDD-NOS occurs when features of Kanner-type autism, such as stereotypical and ritualistic behaviour, communication impairments, and social skill deficits, are present, although not in a sufficient amount to warrant a diagnosis of autism or Asperger’s (Filipek et al. 1999; Fombonne 1999).

Savants and savant skills About 10 per cent of ASD individuals show savant talents, many of these people being of average or above average intelligence (Cash 1999). Savant abilities have been popularized through movies such as Rainman (Molen and Levinson 1988). Savant abilities include being able to paint or draw far better than their peers, to count extremely fast, or being able to calculate the day on which any given person is born. Savant abilities do not always appear to be the function of practising the behaviour over and over again, and may be the culmination of the skills found within the autism spectrum. Table 1.3 DSM Criteria for Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) The term PDD-NOS is used when there is a persistent significant impairment in social interaction or communication skills, both verbal and nonverbal, or when there are stereotypical behaviours and interests, but the criteria for other developmental disorders cannot be met. Atypical autism, involving late onset, subthreshold, or atypical symptoms, is included under this heading. Note: Adapted from the Diagnostic and Statistical Manual of Mental Disorders, 4th edn (APA 1994).

Autism: An Overview

39

Case study: Savant musician One adolescent with ASD could perfectly reproduce a song after only hearing it once. This skill was not always enjoyed by the lad’s mother, who did not always appreciate her son’s pride in playing songs that did not fit with the family’s religious and moral beliefs! He did not understand his mother’s upset at some of his music choices. He could play the song perfectly, but did not always understand what the lyrics were all about. He did not think there was anything wrong about singing the lyrics, even if he did not know what they meant, as they must be socially acceptable if they are played on the radio. As you can imagine, some of the more popular music heard in high school does not espouse virtuous behaviour or attitudes, and was not a hit with his parents.

Communication difficulties Communication impairments increase with the degree of autism, and both receptive and expressive language is impaired to varying degrees. There is a high correlation between IQ and verbal ability in autism. Nonverbal persons on the autism spectrum are much more likely to have a learning disability or mental retardation, and a much poorer prognosis. By the time an ASD child has reached high school, their level of communication closely resembles the level of their future adult abilities (Noens and van Berckelaer-Onnes 2004). Communication differences include egocentric speech, failure to recognize the speaker’s meaning, and pragmatic language difficulties, such as incorrect use of pronouns and odd prosody. Often their speech has odd intonation patterns, a droning quality, and with inappropriate volume. Nonverbal and paraverbal cues are not understood when given by others, and are not used in the usual fashion by the person on the autism spectrum. They may use words in an idiosyncratic manner, but grammar and vocabulary may be intact. Communication errors also occur around the distinctions of giving new information and information assumed to be known, and failure to conform to conversational rules and turn taking. People on the autism spectrum may also ask questions to which they already know the answer, or ask questions in an abnormal way (Perlman 2000).

40

Counselling People on the Autism Spectrum

Often language is taken very literally, and figures of speech or colloquialisms are misunderstood and can cause confusion (Happé 1995; Noens and van Berckelaer-Onnes 2004; Ogletree and Fischer 1995). Irony and sarcasm are almost always lost on ASD people, while metaphors and jokes involving word play simply confuse them. Verbal communication requires rapid processing of speech and nonverbal cues that are fleeting. Noens and van Berckelaer-Onnes (2005, p.134) describe an engineer who referred to himself as “seeing blind and hearing deaf.” For this individual, processing conversation is taxing and time consuming, with the result that he often cannot understand most conversation. Verbose communication partners can overload the ASD person with their conversation, which may cause emotional dysregulation (Laurent and Rubin 2004).

Comprehension and expression Comprehension is more impaired than language expression, particularly for those on the higher end of the spectrum (Perlman 2000; Tsatsanis 2004). This is a result of language being learned in chunks and phrases without necessarily fully comprehending exactly what is said. People with Asperger’s tend to have fluent and articulate speech, although they may have difficulty sustaining a social conversation (Martin and McDonald 2004). Children with Asperger’s syndrome often gain language at the same rate as their peers, but language use is odd, with the vocabulary often more adult-like (Frith 2004). Symbolic aspects of communication are often not understood (Noens and van Berckelaer-Onnes 2004). An analogy that this writer often uses would be that of someone who has learned a second language using a phrasebook. They may have eloquent phrases to express themselves but might not fully comprehend what the phrases mean. Nuances of meaning become lost. Impairment in communicating tends to be stronger when emotional language is involved (Attwood 2003; Meyer 1999). Often others fail to appreciate that understanding of language is more limited than would be assumed from the person’s ability to express himself (Noens and van BerckelaerOnnes 2004). Of course, the person on the autism spectrum is often

Autism: An Overview

41

unaware that their meaning may be different from the meaning the receiver has determined from the conversation. Language may be well understood only in highly familiar situations and topics of expertise. People on the autism spectrum will, to varying degrees, perseverate on a topic of interest and fail to maintain the topic of discourse if it is outside their subject interest (Noens and van Berckelaer-Onnes 2004; Perlman 2000). For some other ASD individuals, most notably ones that have more severe impairment, receptive communication may be stronger, although both are impaired. They may use echolalia to a greater degree, and not always in a manner that conveys language fluency. These are the people with word retrieval issues who cannot find the right words easily to express themselves. Again, emotional language is the most impaired. These people may be partly verbal, and rely on echolalic tendencies to express themselves verbally (Attwood 2003; Meyer 1999).

Echolalia There are two types of echolalia. Immediate echolalia involves the immediate repeating back of what is said, while delayed echolalia is the repeating back of something that was heard in the past. An example of immediate echolalia would be when a person says the word “coffee” after he or she were asked whether they would like a coffee. Delayed echolalia would be the repeating back of something that was heard a while ago, such as repeating back the news broadcast from the night before, word for word, including commercials; or repeating back, word for word, including vocal tone and intonation, the telephone conversation a parent had a week ago. Most often echolalia consists of chunks of sentences, and the person may not completely comprehend the nuances of the language they are using. Echolalia can be a bridge for acquiring verbal language (Janzen 1996).

Social impairments Social impairment is profound in persons who have autism, with a lesser impairment in those who have Asperger’s or PDD-NOS. The difficulty arises from a lack of understanding of social rules, not from a lack of

42

Counselling People on the Autism Spectrum

desire to socialize (Aston 2003; Portway and Johnson 2003). “One should recognize that such individuals, who may have adequate cognitive capacity, lack basic social skills. It is easy to misinterpret disengagement or obtuse behaviour as motivated by hostility or a lack of interest in others” (Perlman 2000, p.224). People with autism may fail to distinguish rude responses from polite ones. This may be due to the impairments of the theory that other people have minds also, and how they would perceive the communication. There needs to be an understanding of why one would want to be polite, as the impact of their behaviour on others is often left unconsidered. Responding with empathy is difficult, and often impossible, for people on the autism spectrum. For someone on the autism spectrum, even those who are higher functioning, it can be difficult to remain calmly engaged in social situations when these situations are difficult to predict. One way to gain some form of predictability is to monopolize conversations and social situations. This often appears rude and obtuse (Baron-Cohen and Wheelwright 2004; Cash 1999; Laurent and Rubin 2004).

Emotional impairments People on the autism spectrum have difficulty both expressing emotions and understanding others’ emotions. They may show difficulty in distinguishing between physical sensations and emotional arousal. There appears to be more impairment in understanding emotions than in expressing them, at least in higher functioning people with ASD. There is an inability to discern others’ emotions from their eyes and significant difficulties determining others’ emotions from vocal tone or prosody (Rutherford, Baron-Cohen and Wheelwright 2002). Facial expression can be flat, exaggerated, or unusual (Attwood 1998; Hill, Berthoz and Frith 2004; Jones et al. 2001).

Emotional regulation When in a calm state, children (and adults) with ASD can use their language abilities to seek help or change the situation to maintain emotional regulation. This breaks down, however, when they are no longer emotionally regulated or are overaroused. Often the dysregulated

Autism: An Overview

43

behaviours stand in sharp contrast with their abilities when they are emotionally calm and are confusing to the people around them. Emotional regulation, which is how one achieves an optimum arousal state to be fully participating in social activities or to meet environmental demands, is crucial to remain socially acceptable, solve problems, and communicate effectively (Laurent and Rubin 2004). It is common for people on the autism spectrum to show behavioural signals that they are becoming emotionally dysregulated or overaroused. Some of these signs can include toe walking, hand flapping, carrying around a favourite toy or article and refusing to let it go, or chewing on clothing. Signs of greater dysregulation are lashing out behaviours, withdrawal, or tantrums. Often these signs of dysregulation are not responded to as coping strategies indicating difficulty, and communication partners may see these as problem behaviours. Punishing or ignoring these behaviours seldom helps the ASD person to regulate their emotions in the social situation, and adds to the individual’s stress (Laurent and Rubin 2004).

Restricted range of interest and perseverations People on the spectrum usually have a restricted range of interests, often narrowly focused into one or two areas. Often they will seek to engage only in these specific activities or will speak on these one or two topics, whether or not their audience is interested. Sometimes the repetitive interest appears to be like an obsession, interfering with the ASD person’s ability to connect socially and daily routines, and limiting family interactions. These restricted interests are experienced as pleasurable to the person with ASD, thus distinguishing them from true obsessions, which are done to bring relief from discomfort, while restricted interests are engaged in for their enjoyment. For some, their expertise in a given area of interest is a source of pride (Grandin 1996; Perlman 2000).

Sensory abnormalities Sensory abnormalities are commonly found in people on the autism spectrum, such as hypersensitivity to sounds and tactile defensiveness, a case where different kinds of touch, often light or gentle touch, are felt as

44

Counselling People on the Autism Spectrum

aversive (Grandin 1996; Jones, Quigney and Huws 2003; Perlman 2000). Approximately 70 to 80 per cent of people with ASD report sensory abnormalities. Sensory overload is common. All of the senses are affected, including kinaesthetic and proprioceptive senses. Depth perception and motion perception may be affected. The person on the autism spectrum may experience both hypersensitivity and hyposensitivity, and vary between the two over time (Jones et al. 2003; O’Neill and Jones 1997; Raymaekers, van der Meere and Roers 2004). One study of children reported by Harrison and Hare (2004) indicated that about 70 per cent were sound sensitive, about 50 per cent were tactile sensitive, about 40 per cent were smell sensitive, and 40 per cent taste sensitive. Harrison and Hare reported that almost 25 per cent of the children were hypersensitive to pain, and 45 per cent were hyposensitive to pain. Sudden unexpected noises have been reported as being experienced as painful, and other people talking can be distracting. Colours can be experienced as being uncomfortable to look at. Food textures can be experienced as aversive. These sensory sensitivities explain some of the odd behaviour found in autism, such as when a person wears socks inside out so the seam is not against their toes, when one colour is avoided, or when sunglasses are worn inside buildings. Sound or vision may suddenly go blank, to return again unexpectedly. For some people with ASD during some of the time one sense may become dominant, so that they are only aware of one sense at a time (Harrison and Hare 2004; Jones et al. 2003). When people with ASD are overstimulated by their senses, they lose their ability to inhibit their responses. Sensory overstimulation reduces their ability to cope. This helps to explain the common observation that people, especially children, on the spectrum tend to lose their ability to manage their behaviours in overstimulating situations (Attwood 1998; Raymaekers et al. 2004). People on the autism spectrum, particularly those who are more severely affected, can experience synaesthesia, a condition where the senses become mixed up, so that sounds may produce an experience of seeing colours, and colours may produce the sensation of taste or smell, or other mixing of senses (Cash 1999; O’Neill and Jones 1997).

Autism: An Overview

45

Coping strategies for sensory issues Jones et al. (2003) discuss that the people they researched had coping strategies, like using the sense of touch when other senses were being overloaded. Other coping strategies included being aware of overstimulating situations and avoiding them. Sometimes focusing in on one sense or one sensory aspect in a confusing sensory experience was used to cope, such as focusing on carpet patterns. For one person with ASD in school, they were unable to listen to lectures and take notes while looking at the teacher. They could listen, or write, or look, but not more than one activity at a time. Withdrawal into oneself was used as a coping mechanism for overstimulating and overwhelming experiences. Another common coping strategy to reduce overstimulation is gaze avoidance, as another person’s eyes are often the most stimulating feature of a face (Grandin 1996; Jones et al. 2003; Willey 1999).

Stereotypical behaviours People on the autism spectrum have what are known as stereotypical behaviours. These behaviours can consist of rocking, flapping the arms and/or hands, twirling in circles, and pacing. Other behaviours that are odd and repetitively done can also be included as stereotypical. An example might be making odd noises, jumping, and twirling fingers in front of the eyes. Stereotypical behaviours are within the individual’s control, and are often engaged in as a stress releaser or for the sensations they bring. When these behaviours are engaged in for pleasure, they are called self-stimulatory behaviours. Often self-stimulating behaviour is engaged in for the sensory pleasure it provides (Harrison and Hare 2004; Janzen 1996; Jones et al. 2003; Sofronoff and Attwood 2003).

AUTISM AND COMORBIDITY Having a diagnosis on the autism spectrum does not preclude having forms of psychopathology. Differences in emotional expression or flat affect may mask comorbid mental health issues. Symptomology of mental health issues may look like problem behaviour in less verbal people. The prevalence of comorbid conditions in persons who are on the autism spectrum is higher than those in the normal population

46

Counselling People on the Autism Spectrum

(Ghaziuddin et al. 1998; Hare, Jones and Paine 2000; Lainhart 1999; Ruberman 2002).

Comorbid mental health conditions In the past there was an assumption that intellectual deficits took precedence over psychiatric symptoms, resulting in the erroneous conclusion that people with mental retardation and cognitive deficits could not also have psychiatric illnesses. In a sample of people with Asperger’s syndrome, obsessive compulsive disorder (OCD) was found in 19 per cent of cases, and attention deficit hyperactivity disorder (ADHD) was also common (Raja and Azzoni 2001). There is an increased risk of bipolar disorder among people with ASD and their close relatives. About 80 per cent of people with a diagnosis of Kanner-type autism also have a diagnosis of mental retardation, with an overall rate of about 10 per cent when considering the entire autism spectrum. Fragile X syndrome can occur with autism spectrum disorders, as can Tourette’s syndrome. Tourette’s and Asperger’s syndrome appear to be more common than Tourette’s with Kanner’s autism (Gillberg and Billstedt 2000). Eating disorders can occur with people on the autism spectrum, including anorexia. Other eating disorders, such as pica, otherwise known as the eating of nonedibles, can also exist. Strong food preferences, refusal to eat foods that touch each other, and limited food repertoires are common (Attwood 1998; Gillberg and Billstedt 2000). Depression and anxiety appear to be the most common conditions that persons on the autism spectrum experience. People indicate that the comorbid conditions of anxiety and depression are the most disabling aspects of living on the autism spectrum (Ghaziuddin et al. 1998; Hare et al. 2000; Raja and Azzoni 2001; Seltzer et al. 2004). Of the comorbid anxiety conditions, social phobia can occur in about 62 per cent of the cases (Tani et al. 2004). At least one clinical symptom of anxiety, if not more, was found in all of the young adults studied by Tani et al. (2004) with 65 per cent of the participants reaching the threshold for clinical anxiety syndrome. Suicide is a concern, though underreported (Hardan and Sahl 1999). Low self-esteem and low self-efficacy are common issues (Attwood 1998), and can be compounded by having an IQ in the borderline range for mental retardation, as diagnosed by DSM-IV (APA 1994).

Autism: An Overview

47

Cognitive impairments may negatively impact intellectual development and emotional development.

Comorbid medical conditions It is estimated that about 10 per cent of people on the autism spectrum have comorbid medical conditions (Rutter 2005). Seizures are common, with rates of 25 to 30 per cent, while attentional disorders or overactivity can range from 21 to 72 per cent. Up to 65.1 per cent of persons on the spectrum may have sleep disorders (Lainhart 1999). Epilepsy and sleep disorders are often found together in people who have autism, with sleep and interrupted sleep facilitating seizure occurrence, and seizure activity interfering with sleep. Often treating sleep disturbances can positively affect this cycle. Sleep disorders are found in about 80 per cent of adolescents on the autism spectrum, and it is likely that there is a high rate of sleep disorders in adults as well (Øyane and Bjorvatn 2005). There is evidence that anxiety disorders negatively affect sleep (Tani et al. 2004). Tuberous sclerosis is commonly associated with autism (Rutter 2005), with a high proportion of children with tuberous sclerosis diagnosed at an early age as having comorbid autism (Gillberg and Billstedt 2000).

CHAPTER 2

Autistic Thinking and Autistic Logic One of the aspects of the autism spectrum that can be confusing for practitioners is the cognitive distortions and unusual logic found with this population. Given the sensory processing differences, the language impairments, emotional impairments, and high rates of comorbidity, there is little wonder that their way of thinking may be different from that of the population that is not on the autism spectrum. Often their way of thinking makes no sense given what counsellors know about the theories of personality, relationships, and the unconscious: What I knew about psychoanalytic and other personality theories, psychodynamics, unconscious motivation, subtle or “understood” meanings was not helping me to understand these people’s minds or their experiences. They could seem self-centered, detached, uncaring, or even hurtful. Yet, they were often attached to people in their lives. They could be pleased or upset when they pleased or disappointed others. Why another person was pleased or disappointed was often a mystery to them. They seemed odd to others, and others often seemed odd to them. (Jacobsen 2003, p.570)

Jacobsen prepares us with her statement that much of what we have come to understand does not apply without taking into consideration the characteristics of the autism spectrum. There are curious deficits in cognition that are rather unique to this population, regardless of the level of intelligence. Understanding how people on the autism spectrum think will facilitate understanding the individual in the counselling room.

49

50

Counselling People on the Autism Spectrum

VISUAL THINKING One of the hallmarks of the autism spectrum is their propensity to think visually. For some people on the autism spectrum, there are only pictures inside their heads (Grandin 1996; Willey 1999). Attwood (2003) quotes an adolescent with Asperger as saying: “I have the picture in my mind but not the thousand words to describe it” (p.82). This was demonstrated in one experiment with children who were on the autism spectrum (Frith and Happé 1999). Several children with autism recorded their immediate experience or thoughts when a beeper went off during the day. The results were primarily of images, including words written on the image to make a thought. There was little, if any, difference between the visual thought and what was seen in real life, as if the children could not imagine something that was not true. Grandin (1996) noted that most of the people who surrounded her in college thought in verbal words. People on the autism spectrum do not use verbal strategies to memorize information, and may seldom use verbal strategies at all (Tsatsanis 2004). Verbal, language-based learning is the primary modality of schooling in North America. As visual thinkers in a language-based learning environment, people on the autism spectrum are at a disadvantage in our educational systems. Attwood (1998) indicated that people on the autism spectrum visualize information instead of recalling words verbally in their head. This strategy leads to poorer recall of verbal information. Attwood reports of one person on the autism spectrum who indicated that verbal words did not seem to stay in her head in any meaningful way. How much information is lost when stories and text are converted to pictures and videos? What is gained in the translation? This visual thinking may not be exclusive in all people on the autism spectrum, and some people with ASD may also talk to themselves as they think, but current research seems to indicate that visual processing of information and visual thinking are the norms for people on the autism spectrum (Attwood 1998; Grandin 1996). The implications are profound. Visual images tend towards the concrete, not the abstract. How many abstract concepts have no visual image? Grandin discussed how she made visual images for concepts, sometimes using printed words with the images. What happens to meaning making and language comprehension

Autistic Thinking and Autistic Logic

51

when you can only recode it in your mind as a picture? Grandin wrote that abstract concepts were translated into pictures of movies that showed the concept or something closely associated to the concept. She reported that things that are more abstract could be incomprehensible: Growing up, I learned to convert abstract ideas into pictures as a way to understand them… The Lord’s Prayer was incomprehensible until I broke it down into visual images. The power and the glory were represented by a semicircular rainbow and an electrical tower. (Grandin 1996, p.33)

Many, if not most, social concepts are abstract, and may only be understood by someone on the autism spectrum by translating the concept into concrete examples of behaviours that would occur. Grandin (1996) reported using this strategy to understand concepts like honesty. She collected pictures and video examples of what honesty would look like in real life, and stored these in her mind as a way to understand the concept. She was able to understand abstract social concepts only when the concept was made concrete and visual. She could not understand the abstract concepts without translating them into images. Visual thinking tends to be concrete in nature. Fortunately, one can cope in our world at the concrete operational stage, as only about 35 per cent of people in industrialized countries ever progress past the concrete operational stage to the formal operational stage of development. At the concrete operational stage, logic has developed, although abstract thinking and thinking about the future are not mastered (Huitt and Hummel 2003). However, the difficulty with conceptualizing abstract concepts in visual modalities can lead to differences in the understanding of these concepts. People on the autism spectrum may have idiosyncratic meanings and associations for abstract concepts (Grandin 1996). Frith and Happé (1999) noted that the children they studied did not seem to be able to visualize anything other than what was in their immediate environment. Aston (2003) writes about one partner of a man on the spectrum who appeared to watch something on the television, and then try it on his wife. He was using the television as a social model. This demonstrates that television can provide the visual images and movies

52

Counselling People on the Autism Spectrum

that people on the autism spectrum learn from. The use of videos to instruct people with autism spectrum disorders has been shown to be effective (Charlop-Christy and Daneshvar 2003) and compares favourably to in vivo modelling of a task. This demonstrates that information is digested best when it is created in a visual format. The challenge is to take counselling, which is based mostly on talking, and adapt it to a visual mode.

Art therapy and autism However, art therapy may not be an effective avenue for people who have autism spectrum disorders. The communication difficulties that people on the autism spectrum have and the difficulty with symbols and symbolic language create difficulties when attempting to interpret art for therapy (Noens and van Berckelaer-Onnes 2004). Often the symbolism of objects and concepts is unique to the person on the spectrum (Grandin 1996). With people on the autism spectrum, interpreting drawings may be impossible as there is often no hidden or symbolic meaning to the drawing, although the process of creating the art has therapeutic value: “Indeed, we have frequently found that an analysis of the final image alone gives a misleading understanding or interpretation of what is going on for the child” (Evans and Dubowski 1988, p.9). Evans and Dubowski indicated that the drawing skill of many higher functioning children on the autism spectrum misleads art therapists into thinking that the child can communicate proficiently through art. Also, there is the possibility that images may come from television programs and commercials that the person on the spectrum has seen, and that the image itself may be appealing with no deeper meaning attached to it, confounding attempts to interpret art with these individuals. Case study: The mushroom artist Bill was a nine-year-old child with autism who enjoyed repeatedly drawing a particular kind of mushroom, shaped like a long and thin upside down letter “u”, which vaguely resembled a penis. You can imagine the disturbance this caused at school, when the adults interpreted Bill’s drawings. The school counsellor was positive that Bill had been sexually abused. Despite evidence to the contrary,

Autistic Thinking and Autistic Logic

53

and a rather large mushroom farm under his bed of these very same mushrooms, the school continued to suspect abuse. However, in this case, it was simply that Bill’s favourite activity and drawing subject had a provocative shape. Sometimes the drawing is literally exactly what it is – no more, no less. This writer concurred with the school that a thorough investigation was warranted to determine if there were any issues of abuse, but that the drawings themselves may not be related to issues of sexual abuse. With most children, repetitive drawing of penis-shaped mushrooms would be a cause for concern; for a child with ASD who has a mushroom farm as his favourite hobby, drawings of mushrooms may only be an expression of his favourite activity.

LITERAL THINKING People on the autism spectrum are often literal thinkers (Happé 1995; Martin and McDonald 2004; Noens and van Berckelaer-Onnes 2004; Ogletree and Fischer 1995). Figures of speech confuse them, and are misunderstood. It is this writer’s guess that this colloquialism confusion makes sense from a visual thinking perspective, as many figures of speech do not make sense as pictures. Take the example of the expression of raining cats and dogs. What would it look like to have cats and dogs falling from the sky? What would it sound like? What image comes to mind when thinking about cats and dogs hitting the ground from that height? The visual image is rather gruesome, don’t you think? Feeling blue? How does that make sense? Does that mean that you would have blue skin? What if having blue skin would make you happy? The thought of having a frog in your throat might be rather disturbing. Would being full of bull feel painful? If someone called you a smart Alec, would that mean you were dumb if your name was Bill? It does not take many colloquialisms to demonstrate that they would be confusing to someone who is a visual and literal thinker. Case study: Catch you later This writer was called in to work with Steve, an older adolescent with Asperger’s syndrome who was attacking teachers and

54

Counselling People on the Autism Spectrum

students. During the initial interview it was discovered that Steve was doing exactly as he thought he was being told to do. Steve’s peers and teachers would say that they would catch him later. The next time Steve saw them, he would run up to them and grab them by the collar, smiling as he caught them. Steve would then become very upset when they became angry with him for grabbing them. The teachers and students thought they were being attacked. Steve was confused. Steve stopped this when this writer explained to him that the phrase “catch you later” was a way of saying that he would meet this person at a later time, and was not a request that he grab the person the next time they met. Steve became so enlightened by this that he decided to create a book of expressions and their meanings for himself, so that he would not frighten or anger his friends. Steve’s social behaviour improved rapidly as his book grew larger. Literal thinking can also mean that there is no underlying meaning. Words are taken at face value and hidden meanings are left unexplored. It also means being very specific in thought and communication. Aston (2003) commented on how literal people with Asperger’s are. She recounted a client who insisted that she was not being unfaithful to her husband when having an affair, as she would tell him if he asked. She simply said that he never asked, so she thought he knew and it was okay with him. For her, the affair was okay because she was not hiding it from her husband. Aston also reported about a male who did not think he was cheating on his partner when he was having sex with a man, because his interpretation of having an affair meant that he had to be having sex with another woman. Because the second partner was a man, there was no affair, and therefore nothing to get excited about. Case study: What you ask for is what you get Many of this writer’s very intelligent clients are literal and specific thinkers. They do not read any more into a communication than what was exactly said. They follow directions to the letter, exactly as they were given. This writer was called by a teacher to work with a disruptive student. Joey, a bright young man with ASD, was

Autistic Thinking and Autistic Logic

55

having difficulty in high school because he was sitting down on the floor and disrupting the class. Upon observation it was determined that he was being extremely compliant. When the teacher said to sit, Joey sat down immediately, on the spot. This spot was often the floor. When directed to sit on his chair, Joey happily got up off the floor and sat on his chair. Joey expressed that he was often confused when the teacher got angry with him when he did what she asked him to do. Joey could not determine that sitting on the floor was not appropriate, and that the teacher meant him to sit on the chair. Joey made many similar errors in interpretation during class, earning him the labels of being oppositional and defiant. When Joey was instructed to ask for clarification when he was unsure of the instructions the teacher gave him, it became clear that he could only understand what the teacher had specifically said, and could not infer what she meant when the instructions were unclear. Soon everyone was happy, as Joey was no longer acting strangely, and the teacher was not losing her patience about his actions. Therapists need to be very specific with people on the autism spectrum. If a therapist tells someone with ASD not to eat any sweets before dinner, they will probably be okay with that and eat something salty instead, and ruin their appetite anyway. You cannot assume that the person on the autism spectrum will understand what you mean in a global, broad fashion. This is due to an orientation to details and a weakness in central coherence in thinking, which will be covered in more detail later in this chapter. Case study: Loophole thinking This writer sometimes refers to literal thinking as loophole thinking. Jack was above average intelligence. He was referred for what was termed “flaunting the rules.” Jack’s high school teachers were extremely frustrated with him, and did not believe that he was on the autism spectrum as he appeared to be intentionally manipulating the rules. Jack followed the rules or instructions given to him to the letter. When instructed that he could not have his lunch

56

Counselling People on the Autism Spectrum

before the lunch break, he proceeded to eat his after school snack. Jack became angry when stopped, as he was not instructed not to eat his after school snack. He was asked not to eat his lunch, and no one had said that he was not to eat any food at this time. When Jack was given clear and detailed directions, covering all contingencies, he complied. Jack was taught that finding a way around the rule was called finding a loophole. Jack was given a rule to help him out. That rule stated that if Jack could find a loophole or way around a rule, he was to ask the person directing him if the loophole was okay to do. Jack enjoyed this as a game, and it helped the people around him to say what they meant and to mean what they said. Loophole thinking affects counselling in that the individuals with an autism spectrum disorder may not provide sufficient information. During counselling, it is important that you ask specific and detailed questions when seeking information. It is not that individuals with ASD will be consciously holding back information, it is just that they would not think of sharing it without being specifically asked. Often the individual with ASD will answer your specific questions, as this tells them exactly what it is that you wish to know. Nondirective counselling strategies may prove less than effective given this characteristic.

SELF-CONCEPT Adults on the autism spectrum lack a sense of self or reference to self, leading to problems in processing words related to the self. There appears to be a profound deficit of self-consciousness (Toichi et al. 2002). It is as if there is no concept of a self, no concept of personal identity. It may be that self-concept and self-referents are too abstract to be made into visual images for people on the autism spectrum to understand. Children on the autism spectrum were shown to have greater difficulty in remembering events that they had personally experienced than events that they saw another child experience, yet there were no differences in free recall tasks. Millward, Powell, Messer and Jordan (2000)

Autistic Thinking and Autistic Logic

57

postulated that having another person accompany the child may enhance their memory, perhaps serving as a memory cue. This writer proposes a different possible way to interpret their findings in the light of the characteristic of visual thinking. It may make sense from the perspective of the discovery made by Frith and Happé (1999) regarding the random thoughts of the children they studied. These children’s thoughts were mostly of the visual images that their environment presented to them at the time when the alarm went off and they were to indicate what they were thinking at that moment. Two things are highlighted in this study. The first is that the recall was of images only, and the second is that the images are from that moment in time, suggesting that the children are highly visual and tend to experience life in the moment. If you were to extend these findings to the recall of self versus others’ experiences, it would make sense that recall would be better for what the individual with ASD saw another person experience, because there is an entire visual image of a person in that memory, and actor in the play, so to speak. If you consider how people experience sight, we do not see ourselves performing a task unless we are viewing ourselves in a mirror. Visually all we can see are parts of our bodies, perhaps our hands and feet, participating in the task. We cannot see our whole body engaging in the task. Perhaps from a person with autism’s point of view, disembodied hands and feet are performing the task, or, if the visual orientation is not on the parts of the body, there is no person seen doing the task. There is no self attached to the task. On the other hand, when they watch someone else perform the task, not only is there clearly a visual person involved, but they themselves become another recall cue. Perhaps what Millward et al. (2000) have indirectly shown is the difficulty that people on the autism spectrum have with visualizing a self when the self is not directly seen, and organizing memories around a self that visually does not exist in any cohesive manner. Case study: I’ll believe it when I see it This was demonstrated by Jason, a young man on the autism spectrum who had difficulty imagining anything that he could not see, and could not understand that others could see him and his

58

Counselling People on the Autism Spectrum

actions. Jason lacked a sense of object permanence, and if he held something out of his line of sight, he behaved as if it did not exist anymore. He described things as if there were some invisible person committing the actions, and, when asked, would insist that things happened mysteriously, because he never saw anyone doing them. Yet he had no difficulty describing others’ behaviour and remembering their actions, and could describe himself as he saw himself in the bathroom mirror. For him, something that was out of sight was out of mind. Since Jason could not see himself unless he was looking in a mirror, he only existed in the mirror. Until he was caught on videotape engaging in inappropriate behaviour, he appeared to have no awareness that he was responsible for the consequences of the behaviour. Most of the people this writer has worked with are not this extreme, although they often do not completely understand their authorship in their actions until they see themselves on videotape, or imagine the situation as if they were a video camera watching from the sidelines. Aston (2003) recounts an episode where one of her clients went for a drive while crossdressing. He was locking his car and about to go into a restaurant when a motorcycle gang saw him and harassed him. He was a very large man and did not pass well as a woman. He was utterly convinced that the reason the bikers knew he was a man was because he wore men’s shoes. He could not see that someone with his body shape could not pass as a woman. He had no sense of himself and how he presented to others as a crossdresser. Many children on the autism spectrum (and, assumedly, adults) lack self-awareness and an awareness of how their actions impact others or bring about consequences. They also have difficulty being aware of their own mental states, and thus are unaware that their thinking impacts their choices in acting. Understanding mental states is a skill required to understand oneself and one’s social interchanges (Frith and Happé 1999). When children are able to report their own mental states they are also able to report the mental states of others. Conversely, when they

Autistic Thinking and Autistic Logic

59

cannot report and understand the psychological states of others, they do not report these states of themselves. (Frith and Happé 1999, p.5)

The ability to understand that others have minds, thoughts, and feelings of their own develops around the same time as their sense of self, and seems to be intimately related (Frith and Happé 1999). This lack of a sense of self and a sense of others is often referred to as having a theory of mind (TOM).

THEORY OF MIND Theory of mind is the awareness that you have a mind separate and unique to yourself and others have minds of their own that are unique to them. This knowledge includes that these others do not necessarily experience and know what you know. This ability is often called mind reading or mentalizing (Leudar, Costall and Francis 2004). The inability to understand another’s thoughts, emotions, and intent is called mind blindness. Having a theory of mind helps in the judgment and prediction of others’ words and actions, and how they may respond to your words and actions. People on the autism spectrum can seem “oblivious on every level to their effect on others, and sometimes oblivious to their own actions” (Jacobsen 2003, p.571). Having no theory of mind means that you do not think about yourself or your actions. The ability to make inferences regarding someone else’s mental state is pivotal to social relations (Hill et al. 2004). People with ASD often cannot predict or understand the consequences of their actions, and may not attribute the end result to their behaviour. Blame is often externalized, as they may not recognize their part in the situation. Blaming others also occurs when the person with ASD incorrectly interprets another’s actions (Attwood 1998). In this case there may be theory of mind ability, but it is faulty. Theory of mind abilities are on a continuum, with autism being at the most impaired end of the continuum and those with Asperger’s somewhat closer to the middle of the continuum, with people not on the autism spectrum at the other end. Those with PDD-NOS show similar

60

Counselling People on the Autism Spectrum

impairments in theory of mind tasks as do those on the autism spectrum. Low functioning people with autism tend to lack a theory of mind while those with Asperger’s have a logic-based theory of mind that is hard learned (Frith and Happé 1999). There are those on the higher functioning end of the spectrum who do express the desire for others to understand them, indicating a working theory of mind (Leudar et al. 2004). Poor theory of mind abilities lead to the inability to comprehend that others, specifically people not on the autism spectrum, may not understand or appreciate the personal experience of someone who has ASD. Also, someone who has ASD may not appreciate that they may not understand the personal experiences of other people on the autism spectrum. There may be the assumption that the individual’s experience is the same as others who have ASD. There are two levels of theory of mind tasks. First order theory of mind is when an individual can infer the beliefs of another person. In other words, the individual is aware that other people have thoughts of their own, which may be different from the thoughts of the individual. Second order theory of mind is when an individual can infer a second person’s beliefs about a third person. In this case, the individual can accurately assess what a second person would think about a third person’s thoughts. Theory of mind allows an individual to understand another person’s intent or meaning. To understand metaphors, irony, similes, communicative intent, and hidden meaning, an individual must have an ability to infer what the other person is thinking. Irony is probably the most difficult thing to understand, and requires second order theory of mind (Frith and Happé 1999; Martin and McDonald 2004). The most extreme impairment of theory of mind, more commonly found in autism, involves no concept of mental states, no understanding of mental states, and no representation of mental states. A lesser impairment that is more often associated with Asperger’s is where there is some kind of understanding of mental states, and some kind of representation of mental states, but a lack of applying or manifesting this knowledge. Thus a person who is higher functioning on the spectrum may be able to tell you what they believe to be the other person’s thoughts, but may not have any idea what to do regarding this knowledge. This can become confusing in a counselling setting, when faced with a situation where the

Autistic Thinking and Autistic Logic

61

individual can express an accurate account of another person’s thoughts, yet cannot fathom what to do to address the situation. The immediate assumption would be that an individual who could express what the other person was thinking would also have the understanding of how to react in the given situation. Attributing meaning to behaviour of those on the autism spectrum is often inaccurate. Attribution of meaning involves assumptions of intentionality, which involves theory of mind abilities. To be able to take someone else’s perspective, and to fathom intentionality, you must be able to infer the other’s mental states, thoughts, and emotions (Jacobsen 2003). A great deal of social misunderstanding comes from the inability to comprehend others, or the lack of theory of mind abilities. Case study: Mind reading Theo, a young adult with Asperger’s, described understanding how other people think as akin to mind reading. Theo was positive that everyone else could mind read, and this was how they knew what the other person was going to say or do. He did not understand the predictive value of having a theory of how minds work to help predict what a person was most likely to say or do. To him it was all like magic, and we were all magicians. Theo explained that everything anyone said or did was a complete surprise to him, and often startled him. When Theo began to think about the possible thoughts the other person could have, he was better able to understand the other person’s next action. When Theo used cartooning and thought bubbles to draw out social interchanges, he began to understand how the other person’s possible thoughts impacted what they said or how they acted in the situation. Theo began to appreciate his mother’s cross response to him when he routinely asked her to do something for him when she was on the telephone. Case study: Thinking about thinking Sam, a ten-year-old who had PDD-NOS, when asked what a peer thought about his hitting, seemed genuinely puzzled by the question. Sam did not understand the concept of thinking. When this writer explained to him that people said words silently in their

62

Counselling People on the Autism Spectrum

minds, or made pictures in their minds about things they knew or things that happened to them, he appeared very confused. Sam insisted that it was not possible that other people had pictures or heard words in their heads, as he could not see any pictures coming from their bodies or hear any words being said. When asked how he knew that he thought, he said that he could see the pictures in his head and hear the words. Since he could not see or hear other people’s thoughts, they could not exist. Sam had no theory of mind, and could not comprehend that his actions could affect someone else. To him we were all like animated furniture. He began to understand that other people have thoughts and pictures in their heads through the use of comic strips, where thoughts and pictures were in thought bubbles.

Making thoughts visible The use of thought bubbles, or making thoughts visual, has been shown to help people with ASD understand others’ possible thoughts as well as their own. Using thought bubbles to make thinking visual may help teach theory of mind concepts and mind reading to people on the autism spectrum (Kerr and Durkin 2004). This technique is also called Comic Strip Conversations, and was developed by Carol Gray (1994a). Cartooning someone else’s thoughts, and colour coding their emotions, can provide the client with an understanding of the impact of their actions on an intellectual level, not on an emotional level. Comic Strip Conversations will be covered in more detail in Chapter 6. Jacobsen (2003) comments that, for individuals with ASD, learning to cope in our world involves learning cognitive skills, and does not involve an emotional understanding. People with ASD can understand another person’s mind if they have an understanding of what knowledge that person may have. Often the analogy of another person’s knowledge coming from that person’s experience, much like a video camera records events, is helpful. They cannot understand the emotional experience as it relates to the information, however, much like a video camera does not understand emotions.

Autistic Thinking and Autistic Logic

63

DIFFICULTY WITH CHANGE AND SHIFTING ATTENTION One of the hallmarks of autism is difficulty with change and shifting attention. Individuals on the autism spectrum have difficulty coping with change and are often resistant to change. Difficulty with change includes difficulty with changing activity levels. Change, even that of a change in the environmental detail, may be experienced as something that must be relearned and overwhelming (Jacobsen 2003; Tsatsanis 2004). Landry and Bryson (2004) took children who had autism and compared them to children with Down’s syndrome and a control group. The children on the spectrum had greater difficulty disengaging from two competing stimuli, and showed a subtle impairment in executing rapid shifts of attention from one side to another. The children with autism frequently became stuck between two visual competing items. Intelligence had no discernible impact upon the inability to shift attention. Landry and Bryson reported that similar studies of adults indicate that about 45 per cent show similar attention-shifting difficulties. Impairment in shifting attention interferes with the ability to disengage from one activity to another. Ory (2002a) discussed how this inability to shift occurs with behaviours as well. Taking action may be dependent upon external organization, such as step-by-step prompting through an activity or task, or someone else to initiate action. Shifting out of stuck, perseverative behaviour (or stuck attention) can be facilitated through the use of competing stimuli, such as presenting the person with an item, or bringing in a new person to interact with. This inability to shift attention can be exacerbated by anxiety. Case study: Can’t get that commercial out of my mind Peter, a young adult with autism, would perseverate on the last television commercial that he heard. Peter would repeat it over and over, until someone asked him a direct question. At that point he would be able to answer, and move on to something else. Peter described it as having the commercial “spin round and round in my head, like a stuck record” and that he needed someone to “unstuck the needle.” Without that help, he could not think of anything else.

64

Counselling People on the Autism Spectrum

Peter experienced great anxiety when his thoughts got stuck, as when they were stuck he could not ask someone to do something to help him shift his thoughts. His anxiety made the thoughts go faster, making them even harder to shift. Peter was able to take a cue card out of his pocket to give to a nearby person. This cue card instructed the person to ask him a specific question. This strategy enabled Peter to cope with his spinning thoughts by giving him a nonverbal way to ask for help. Anxiety regarding change, which hampers coping with change, may be due to not understanding the expectations of the next activity. It is difficult to move from a familiar activity or situation to one that is an unknown. Being concrete thinkers, people on the autism spectrum have difficulty thinking ahead into the future to plan for possibilities. Thus, transitioning to an unknown activity becomes anxiety producing and can immobilize the individual with ASD. Case study: You want me to do what? William could not transition to an unknown activity. This severely limited him as a young adult, as he could not get himself out of the house to do anything unfamiliar. His anxiety was so great that he was unable to open the door at times. He refused to accept community supports, which meant that he would have to engage in new activities and meet new people. William, however, really wanted to go on vacation with his family to a famous entertainment park. William searched the internet to find pictures and videos about the place. Having these videos and pictures helped him plan the vacation, and to do something new. William stated that he did not perceive the trip as novel, as he had seen pictures and videos for months prior to the actual trip. These tools reduced his anxiety, as he was able to see what to expect. When he returned, this writer worked with the available community supports to develop videos and photo albums to show William what he could expect when out in the community. This enabled William to begin to access the community services available to him.

Autistic Thinking and Autistic Logic

65

EXECUTIVE FUNCTIONING There can also be problems with executive function, or the ability to plan, organize, and monitor one’s own performance. Executive functioning means the metafunctions of the mind, and can be described as the executive (or boss) that manages thoughts and awareness. Executive functioning describes the metacognitive processes that monitor, assess, and organize thinking. Executive functions include central coherence, cognitive flexibility, organization abilities, source monitoring, inhibitory functions, and meaning attribution.

Central coherence Central coherence is the way that things are formed to make a whole of the big picture. Strong central coherence gives someone the ability to remember the gist of a story, to get a sense of the whole. It is the ability to understand the theme or common thread in information. Central coherence allows people to understand broad concepts without necessarily knowing all the details (Martin and McDonald 2004). Weak central coherence, on the other hand, means that details are remembered, often in a disjointed manner, with no sense of a global meaning. Every detail is as important as every other detail, and no weight is given to more important information. There is no clear beginning or ending. These are impairments in the central cohesion of thinking. In other words, where people not on the autism spectrum tend to fit pieces of information into some greater whole, people on the autism spectrum tend to keep the parts separate and unrelated. Having central coherence weaknesses means that people on the autism spectrum are detail thinkers but do not think in themes or broad interpretations. Weak central coherence leads to deficits in using sentence context in comprehension but verbatim recall is excellent (Martin and McDonald 2004; Teunisse et al. 2001). It is this lack of central coherence and orientation to detail that creates what this author calls loophole thinking (discussed earlier in this chapter). Sense making may be fragmented and literal as details are not combined on common themes. There may be a lack of ability to create themes from several sentences. Central coherence is the ability to pull

66

Counselling People on the Autism Spectrum

information and sensory input together to acquire higher level meaning. Higher level meaning is created by forming patterns of information into a greater whole, something that is difficult to do when there are central coherence difficulties. Higher level meaning making requires the ability to weigh importance of information when deducing a more abstract meaning (Martin and McDonald 2004; Noens and van BerckelaerOnnes 2004, 2005; Teunisse et al. 2001). Metarepresentation is when information is given meaning beyond the literal meaning. Often there are secondary messages hidden within primary messages. People with ASD seldom reach the level of metarepresentation, as they get lost in the details of the information. Thus, hidden, dual, or global meanings are lost to them (Noens and van Berckelaer-Onnes 2004).

Cognitive inflexibility People with autism tend towards concrete thinking, which negatively impacts their ability to change how they conceptualize things, known as cognitive flexibility. Lack of cognitive flexibility of thinking impairs the ability to make plans and creatively problem solve, as thinking remains stuck. Transference of learning and information is often an issue, as rigidity in thinking impedes the transfer of knowledge across situations (Attwood 2003; Tsatsanis 2004). Rigidity in thinking was studied by Russell and Jarrold (1998). Upon examining the errors that children on the autism spectrum make, they noted that the children with ASD both made more mistakes than their peers, and corrected proportionately fewer mistakes than their peers, although the ASD individuals corrected the relative same number of mistakes as their peers. Thus, they tended to make more errors without self-correcting their mistakes as often. The difference made in the absolute mistakes was what contributed to the difference in the total number of mistakes made by people with ASD. Some of the mistakes made could be explained through cognitive inflexibility, where the children could not easily change their responses to accommodate to the change in rule of the task. The assumption is that this cognitive inflexibility continues into adulthood.

Autistic Thinking and Autistic Logic

67

Cognitive inflexibility contributes to perseverative thoughts, where one thought or idea gets stuck and will not change. These stuck thoughts can create anxiety as they spin out of the person’s control. Sometimes the only way to move the person on to something else is to put an object cue in their hand, which calls upon a sensory function (Ory 2002a). This cue distracts them from their thoughts while providing them with the cue to become engaged in something else, therefore redirecting their thoughts away from the ones they were stuck on. Case study: Stuck thinking James, a young adult with ASD, described his stuck thinking as having a big collage that showed him what his whole day would be like, from one moment to the next. If something should change in his day, one of two things could happen for James. He could get stuck on what his collage showed him as the next thing, and become agitated if it did not occur, or James’s mental collage could shatter into a million pieces, leaving behind a whirlwind of disconnected things that made him feel frightened and confused. When that occurred, James withdrew, as he could no longer organize his day or anticipate the next activity. If pushed to perform when this occurred, James would become very anxious and agitated, and could react strongly to demands that he get back to work. James’s collage would remain intact, however, if he was forewarned of a change; James could then mentally insert a piece that indicated there would be a change, and the collage was reorganized around this piece, enabling him to cope.

Organizational deficits Organization is a challenge for people on the spectrum. For some people, thoughts, tasks, and possessions are in total chaos as they do not know where to begin or how to self-organize. Others show organization in their possessions, and become upset if anything is moved out of place, but this organization is externally created. Difficulty in organizing results in the experience of memories as discontinuous and disconnected (Aston 2003; Attwood 1998).

68

Counselling People on the Autism Spectrum

Organizational deficits can be addressed using visual tools such as calendars, personal organizers, lists, checklists, and alarms. The use of visual schedules, in which the day is planned out visually, is also a helpful way to organize. Tools such as cognitive mapping can help to organize thoughts (Attwood 1998). Consistent routines and scripts help people with ASD to be more independently capable. Often organizational and executive functioning difficulties limit what otherwise intelligent people with ASD can do. The use of scripts, checklists, and reminders, as well as consistent routines, helps the person with ASD become more competent at everyday tasks (Attwood 1998). This writer has experienced success in using a personal digital assistant (PDA) with high functioning individuals with ASD. These tiny computers come with reminder functions, where you can set multiple alarms to remind the individual to perform tasks at any time of the day. The benefit of these organizers is that they look good, and are often well received by adolescent peers and adults. Some models can also be quite inexpensive. This writer has helped set up these electronic assistants for several high school students and adults with ASD to remind them of regular daily activities, of tasks that are due, and as a cueing device with lists that guide them through different activities, with reminders to look at the lists. The organizers are small and can fit into a pocket or purse, and require only a moderate amount of instruction to use. They synchronize with a desktop computer, creating a backup in case the data on the PDA is lost. Some students have purchased pocket-sized portable keyboards for their PDAs, and use them to take notes in class, as they can type faster than they can write. This also helped in making their work more legible. Many PDA programs have spelling checkers, which can facilitate the production of written work for people with ASD. Case study: The late great Barry Barry, an adult with ASD who was known for being late and missing appointments, set up his PDA to remind him about the appointment twice, both the day before an appointment and an hour before. Barry went from being continually late to being always on time. Barry uses his PDA to remind him to pay bills, take

Autistic Thinking and Autistic Logic

69

medication, and to track his work shifts. His PDA became quite the hit when it helped him to remember his anniversary and his wife’s birthday. This author has been made aware of PDA software that can utilize touchscreen input to generate prerecorded words or phrases for individuals who cannot communicate vocally. The phrases are connected to pictures, words, or symbols that are displayed on the touchscreen. A different program for PDAs displays pictures or photographs of the steps in a task. Each step is displayed singly, and the next step is shown when the touchscreen is activated to indicate that the current step is completed. This writer is unaware if any research has been conducted using these software and hardware tools. These tools look promising for persons on the spectrum who are nonverbal or illiterate. Computers have been shown to be useful teaching aids for people on the autism spectrum (Moore, McGrath and Thorpe 2000). Their ability to provide reminders that can be set for differing time periods makes them useful cueing systems for self-monitoring. A future possibility will be to use portable computers to assist in cognitive behavioural treatment programs, such as treatments for anxiety (Newman, Consoli and Taylor 1999; Newman, Kenardy, Herman and Taylor 1997). This writer has successfully used handheld computers such as Palm Pilots and Pocket PCs for self-management systems, as reminder devices, self-monitoring devices, and reinforcers. These devices tend to be trendy, and therefore do not stigmatize the person utilizing them.

Source monitoring People on the autism spectrum have difficulty with source monitoring tasks, or determining the origins of memory, beliefs, and knowledge. Often they cannot tell if someone said something, which of two people said something, or whether they themselves have said it, which is external source monitoring, or whether they just thought it in their heads, which is internal source monitoring. Source monitoring difficulties are often shown when a person on the autism spectrum is unaware that they expressed their thoughts out loud, or thought they had said something to you when they only said it in their heads. This is different from the

70

Counselling People on the Autism Spectrum

inability to inhibit thoughts from being spoken out loud. An example of this would be an individual who talks himself through a task without any awareness of whether he said the script out loud, only said it inside his head, or if the person beside him had said it. The individual would hear the words, but have no idea where they came from (Hala, Rasmussen and Henderson 2005).

Self-restraint and self-control: inhibitory functions People on the autism spectrum tend towards impulsivity and disinhibition, with poor ability to control emotions. Often the person with an autism spectrum disorder responds to emotional cues without thinking. The ability to inhibit action is impaired, often resulting with acting upon impulsive thoughts. Some people with ASD have an inner voice, but often cannot stop from speaking what the inner voice is saying, no matter what the situation (Attwood 2003). Individuals with autism tend towards having difficulty inhibiting responses. Bishop and Norbury (2005a) found that a high functioning autism (HFA) group did not make fewer responses, but made many more mistakes than the control group. Their ability to inhibit incorrect responses was less than the control group. Bishop and Norbury (2005b) propose that the difficulty in inhibiting behaviour lies with failure to use inner speech to prompt oneself from acting. Anxiety contributes to disinhibition, often resulting in increased impulsivity. The difficulties with self-restraint often lead to the characteristics of in sight, in mind. When something is within sight, it becomes compelling, and cues the person to do something with it. Resisting that compulsion can be very difficult (Ory 2002b), and can lead to many difficulties. Case study: In sight, in mind Tim had difficulties with self-restraint. Tim would impulsively grab whatever he saw, even if it really wasn’t what he wanted. For example, Tim would see a television remote control and immediately pick it up and channel surf, regardless of what he was previously engaged in, and whether he really wanted to watch television. Another example would be seeing a box of cookies; resisting eating them may be near to impossible until all of the

Autistic Thinking and Autistic Logic

71

cookies were gone. For Tim, this also meant that if all his tools were laid out for a task he would feel compelled to complete the task, whether or not he really wanted to. He became a very good worker at his job placement, providing the tools were laid out within his field of vision.

Meaning attribution Individuals on the autism spectrum may have difficulty with attributing meanings in a way that would appear logical to a typical individual. Difficulty with understanding central coherence, combined with unusual logic, can result in unusual meaning attribution. This can be seen in Aston’s (2003) example of a male partner with ASD who did not associate having sex with a man as committing adultery, and therefore did not believe that he was being unfaithful to his female partner. Homosexual activities had no meaning of unfaithfulness attributed to them.

AUTISM, EMPATHIZING, AND SYSTEMIZING ABILITIES There has been a recent focus on the autistic ability to systemize, or understand how many systems work. There has been recognition that people on the autism spectrum have great difficulty with empathy but seem to have a strength in the ability to understand systems. Empathizing is described as being able to identify another’s emotions and thoughts and to be able to respond to these appropriately. Systemizing is described as the ability to understand and build systems, and predict how a system will perform given certain conditions. Systems can be mechanical, natural, environmental, technical, abstract, or taxonomic (Baron-Cohen and Wheelwright 2004; Lawson, Baron-Cohen and Wheelwright 2004). Systems do not include human systems, such as family systems or office dynamics. These would fall under the empathizing types of thinking. Lawson et al. (2004) noticed that females who are not on the autism spectrum scored highest on empathizing, more than males who were not on the spectrum, while non-spectrum males scored higher than Asperger males. Non-spectrum females scored worse on systemizing than both

72

Counselling People on the Autism Spectrum

groups of males, while both male groups scored about the same. These results support the idea that people with autism spectrum conditions demonstrate an empathizing deficit whilst having a level of systemizing skills that is, at least, in the normal range (Baron-Cohen and Wheelwright 2004). These deficits in empathizing have a profound impact on personal relationships.

AUTISTIC THINKING AND AUTISTIC LOGIC People on the autism spectrum can have idiosyncratic logic that does not make sense to others. This autistic logic can be more pronounced in people who are more severely affected, but exists continuously throughout the spectrum. This may be the most confusing aspect of autism for counsellors and clinicians. Autistic logic is associational, and often not logical. Things that are associated appear to be related in a logical way for many people on the autism spectrum, such as planes flying high because the person is not afraid of heights or planes (Grandin 1996). This appears logical to them because all three things are related in some way. However, this does not appear logical in a typical cause and effect manner. Autistic logic is the base for autistic problem solving. This is why many of the attempts to solve problems that are brought to the awareness of counsellors and clinicians are strange. As with anyone, the attribution of meaning to a situation will affect behaviour, although the meaning that someone on the autism spectrum may attribute to a situation may not seem apparent and may not be expressed. Often we cannot make sense of the ASD person’s behaviours, and many people not on the autism spectrum will attribute inaccurate meaning to the behaviours (Jacobsen 2003). The most common mistaken attribution that has been brought to this writer’s attention is that the person on the spectrum engages in a particularly odd behaviour to annoy the people around them, or to be disrespectful. There is an implied intent to annoy added to the meaning of the behaviour. However, the behaviour may be simply a case of unusual problem solving that may seem logical to someone who has ASD. When considering the logic provided by the person on the spectrum, some sense can be made of the situation, although the logic is based on faulty assumptions.

Autistic Thinking and Autistic Logic

73

Case study: Autistic logic One example of autistic thinking was a teenager, Bob, who used his mother’s iron to heat a cheese sandwich. Bob’s mother had told him not to use the stove because he often left it on and set things in the kitchen on fire. Bob wanted a grilled cheese sandwich, and decided that the iron would do nicely as a tool to heat it. As this was not using the stove, he thought his solution was fine. Case study: More autistic logic Randy was a low functioning child with autism who left his school without permission and travelled by bus to another city to see his grandparents. This was a trip of several hours, including several different modes of public transportation. His school and parents were frantic when he was discovered missing. In Randy’s mind this trip was perfectly fine, as the last trip he took was on a Friday the thirteenth, so everyone knew where he had gone. Randy followed the exact schedule of the previous trip that he had taken to visit his grandparents. Autistic logic may show up in their humour. Individuals on the spectrum can have a sense of humour, although it may be developmentally simpler and may not make sense to someone else. This author knew one teenager who loved to tell knock-knock jokes, but without a punch line. He thought this was hilarious. His audience was confused by his jokes.

In-the-moment thinking Often people with ASD experience life in the moment, without a sense of the past or the future. This is more pronounced in persons who are more severely affected. When this is the case, it becomes very difficult for learning from past experience to be brought into the present experience. This may be one explanation of why people on the autism spectrum do not transfer learning to different situations. It is difficult to recall learning when your cognitive state and capacity fluctuate from moment to moment (Ory 1995). This is compounded by the sensory abnormalities and fluctuations that occur in persons who have ASD (Attwood 1998),

74

Counselling People on the Autism Spectrum

and the emotional dysregulation that occurs when overstimulated or anxious (Laurent and Rubin 2004; Raymaekers et al. 2004).

Black and white thinking People with ASD tend to think in polarities, in black and white. They like firm answers and consistent routines, where things are the same and do not change unpredictably. They like rules that are consistent, and will follow these rules, expecting everyone else to also follow the same rules. People on the spectrum tend to be rule bound, which means that their behaviour is governed by rules. They may get stuck on the rule, and may have difficulty coping with the exception to the rule. Rules and rituals help make abstract social practices concrete for people with autism spectrum disorders (Attwood 1998; Ory 2002a). Grey areas are when there are exceptions to the rules. Often it helps to use the framework of black and white areas, where rules are consistent, and grey areas, which are exceptions to the rules. Black and white rules are for everybody. There are no exceptions. It is always the same, at the same place and time. There is only one way to do things. Examples of black and white rules are things like you always wash your hands after using the bathroom, or you always brush your teeth and comb your hair before you go to work or school. Grey areas are when there are exceptions to the rules. Examples are when there are different rules for different people, such as for men and women, or when the rules change depending on the time, such as travel costs change dependent upon the season (Ory 2003). This writer has found it helpful to create rule books for clients that spell out the black and white rules and the grey areas, dividing the book into these two sections. For these clients, having a rule book that stays the same provides a sense of security and predictability, even if the rules are in grey areas and change under certain conditions. The fact that the book does not change seems to bring them some comfort.

Part Two: Counselling Issues and Approaches

CHAPTER 3

General Strategies and Modifications for Cognitive Behavioural Therapy Individuals with autism spectrum disorders (ASD) require specific modifications and adaptations to benefit from counselling. Adaptations and modifications are required for both counselling strategies themselves and the counselling relationship (Hare and Paine 1997).

SETTING UP THE COUNSELLING RELATIONSHIP Clients on the autism spectrum may not have an understanding of the expectations of a counselling relationship, or the “social ground rules for a therapeutic relationship” (Attwood 2003). They may require instruction on turn taking and sharing of information. They need to understand the rules of what information the therapist needs to know, and when telephone contact is available, and its purpose. Clients will also need to know that therapy can be effective for their problems when they work with the therapist as a partner. Rules of working as a partnership may need to be spelled out as well. The focus needs to be on concrete issues and symptoms, details and not the big picture issues, and problem focused (Attwood 2003; Hare and Paine 1997). ASD people struggle with innuendo and double meanings. In couples counselling and individual counselling this becomes an issue as the ASD person may not be able to communicate on the feeling level, or may not have the same perspective of the difficulty that the partner or therapist has. They are therefore not going to bring that perspective into the

77

78

Counselling People on the Autism Spectrum

counselling room. In other words, if the client does not see something as a problem they will not talk about it unless asked some very pointed and specific questions (Aston 2003). Clients on the autism spectrum will require a more structured approach, longer time to process new information, and perhaps shorter sessions and many more practice sessions. Typewritten notes may be helpful and group settings may not have therapeutic value, as the ASD client will struggle with the social aspects of groups. Groups are only recommended if the target for intervention is social skill development (Aston 2003; Attwood 2003; Hare and Paine 1997). Often it is helpful to find examples of times when the client was able to maintain self-control or otherwise overcome their problem. Many clients on the autism spectrum engage in all-or-nothing thinking and do not notice or remember successes (Ory 2002a, 2003). From this you can identify intact coping strategies and build upon this, as well as provide evidence that the client is capable of solving their own problems and succeeding (Hare and Paine 1997).

BASIC MODIFICATIONS FOR COUNSELLING PEOPLE WITH ASD Several basic strategies and modifications to cognitive behavioural therapy are required to maximize benefit for persons on the autism spectrum. These modifications utilize the relative strengths of people on the autism spectrum while providing support for their areas of difficulty. The modifications appear to help most ASD clients, even those who are very high functioning (Aston 2003; Attwood 2003). In this writer’s professional experience, clients who have Asperger’s or high functioning autism appreciate these modifications and benefit from them, even when they appear not to need such modifications. Case study: I’ll hear it when I see it This writer has discovered that concepts discussed during counselling are understood more easily when accompanied by written notes or diagrams. As Roger, a young adult with high functioning autism, put it, “I can’t hear you until you write it down.” Roger

General Strategies and Modifications for Cognitive Behavioural Therapy

79

commented that he did not think the diagrams and notes were necessary, but the notes “facilitated understanding and integration of the concepts.” This writer has discovered that writing concepts down during sessions and diagramming concepts facilitates client understanding and focus. Giving the client a copy of the notes and diagrams encourages follow through outside of sessions, and can act as a touchstone for the beginning of the next session. Primarily, modifications to cognitive behavioural treatments involve representing the intervention in concrete and visual forms, utilizing the traits of autism spectrum disorders of having strengths in visual thinking and concrete thought processing. Making interventions concrete facilitates working with people on the autism spectrum who also have mental retardation (Cutler 2001).

Make interventions visual and concrete Most cognitive behavioural interventions are amenable to visual forms. Bibliotherapy types of cognitive behavioural interventions for people on the autism spectrum are called Social Stories™, and were developed by Carol Gray (1994a, 1994b). Gray has developed social articles for adults with autism spectrum disorders. Social Stories™ graphically represent situations, thoughts, and actions. Social articles rely primarily on journal-type explanations of social situations. These are covered in more detail in Chapter 6. Using visual outlines, time planners, and specific notes supplement cognitive behavioural programming for people with ASD (Fullerton and Coyne 1999). It is the experience of this author that clients may be resistant to visual aids and adaptations, particularly if they have not come to accept the diagnosis of an autism spectrum disorder. Acceptance of visual aids such as lists and notes regarding sessions may be facilitated by framing the aids as a tool for the counsellor’s benefit, or as a standard practice in counselling. Copies of notes can be made so that the client can take a set home while a set remains in the file for future work. Having notes from sessions appears to be useful in having treatment generalize between sessions (Aston 2003).

80

Counselling People on the Autism Spectrum

Cognitive behavioural concepts can be made visual through the use of diagrams and checklists. One diagram that this writer has found useful shows the relationship between thoughts, feelings, actions, and the individual (see Figure 3.1). Diagrams such as these facilitate instruction of how affect, cognition, and action are related in an individual. Often the people on the spectrum with whom this writer works do not understand how thoughts, feelings, and actions relate to each other until they see it diagrammed out. thoughts

feelings

actions

Figure 3.1 Thoughts, feelings, and actions diagram This diagram can be helpful in explaining how thoughts, feelings, and behaviours interact with each other. This is a useful visual tool for ASD clients who are having difficulty understanding how their thinking, behaviour, and feelings interconnect. The superimposed person connects the concept to an individual. On occasion, this writer has used photographs of the client’s face for the diagram, further connecting the thoughts, feelings, and actions to the client.

Other creative ways to make concepts concrete and visual are also helpful. One client, who wanted to rid himself of disturbing thoughts, wrote them down on toilet paper and flushed them. Once he saw the paper swirl down the toilet, he knew it was gone, and since the paper was gone, he could no longer get the thought back. By this client’s autistic logic, once he saw the thoughts written on to paper disappear, they no

General Strategies and Modifications for Cognitive Behavioural Therapy

81

longer existed for him. He could then carry around new and better thoughts on non-flushable paper so that he would have them when he needed them.

Assessment tools Assessment can be done with many of the clinical tools available, but modifications may be required for emotional evaluation. Graduated responses of emotion may best be represented visually, such as an emotional thermometer, bar graphs indicating degree of emotion, or number scales to show the degree of a quality (Attwood 2003). For some examples, see Figures 3.2 and 3.3. What you are attempting to do is make the abstract concept of degree, quality, or quantity of emotion or opinion concrete and tangible to facilitate the identifying of the amount of what the assessment tool is measuring. This writer has noticed that having a visual scale measure may reduce some of the all-or-nothing thinking that can occur with people on the autism spectrum (Portway and Johnson 2003).

J K L Figure 3.2 Emotional thermometer This tool can be used to graphically display gradients of emotion, satisfaction, or ratings of a particular characteristic, such as one’s ability to cope. An emotional thermometer can help a client determine the various degrees of an emotion that he or she is experiencing. For example, a child may use the thermometer to visually rate how well they think they used their coping skills or how they were feeling after attempting a new activity.

82

Counselling People on the Autism Spectrum

Strongly agree 1

J

Strongly do not agree

Neither agree or disagree 2

3

K

4

5

L

Figure 3.3 Example of a response quality scale A response or quality scale visually divides a particular quality into smaller increments, which can vary from five increments, shown above, to seven or ten increments. This tool facilitates the scaling of different qualities, such as emotion or satisfaction. Repeated use of a scale such as this to measure the same quality over a period of time provides clinicians with a system to demonstrate change. An example of using a rating scale is to rate agreement with a series of statements, such as rating agreement to a statement regarding feeling happy most of the time or usually engaging in self-calming behaviours when agitated. A sample statement could be “I am usually happy.”

Ongoing use of the same informal visual measures allows comparison of progress to the baseline of the initial assessment. It may also be helpful to graph progress as a visual way to demonstrate that counselling is having a positive effect. It is important to prepare clients that progress is always uneven, and that the graph should look more like a mountain range that is changing direction over time. In this writer’s experience, declining changes may precipitate an emotional escalation and blow-up if the client has expectations that the graph should only show improvement. When creating number lines to indicate varying degrees of a construct, this author uses a method similar to that of Hare et al. (2000). Varying degrees of emotions, including appropriate words to express that degree of emotion, the client’s way of describing or expressing that emotion, and physical signs that may accompany that emotion, are written on to a PostIt note. Then the PostIt note is arranged on the number line. PostIt notes can be rearranged until a hierarchy is developed. Distance between notes can provide information regarding the differences in degree of the emotion. This is a useful way to determine

General Strategies and Modifications for Cognitive Behavioural Therapy

83

if the range of emotions escalates quickly or unevenly by how the PostIt notes cluster on the line. Few assessment tools have been developed for people on the autism spectrum. One useful tool is a stress survey developed specifically for people on the autism spectrum (Groden et al. 2001). It is in a checklist format and can be self-administered by someone who has good reading skills, or it can be read to the person. The tool can also be used by parents or others who know the person on the spectrum well to facilitate assessment of children or those people who are nonverbal. Assessment should include behavioural changes, such as an increase in perseveration or time spent on favourite activities, becoming more rigid in routines or rituals, changes in coherence of thought, or self-stimulatory behaviours. These may indicate emotional difficulties. An increase in attempting to control other people in their lives may also indicate emotional difficulties or a feeling of losing control. For example, it may be helpful to ask questions regarding changes in time spent on a favourite activity or time spent away from other people. Behavioural incidents may also indicate emotional difficulties, especially ones that involve aggression. All environments must be explored, as indicators of emotional difficulties may only occur in a single environment, such as the home. These indicators would be used in addition to more usual indicators of emotional difficulties (Aston 2003; Attwood 2003). Using multiple choice type questions instead of open-ended questions may prevent word retrieval problems (Attwood 2003). In this writer’s professional experience of working with children and adults who are on the autism spectrum, when offering possible multiple choice answers to a question, if none of the choices apply, the person can usually respond that none of the possible choices apply to them. When the person appears stuck on the choices offered, adding a choice of none of the previous choices will often help them answer. It is the writer’s experience that by providing written choices the therapist can minimize verbal processing difficulties. Care must be taken to remind the person that there is no right answer to the questions. Some people on the spectrum, who do not really understand the purpose of assessments and questions, will try to answer with the answer that they think you want to hear, as if there were a right and wrong answer. It is this writer’s belief that this may be a

84

Counselling People on the Autism Spectrum

reflection of the training provided by the education system, where the person may have learned how to judge what the right answer is by watching the instructor for cues. An emotion dictionary can be helpful, and can be used for ongoing assessment as well. Included would be pictures of emotions plus written descriptions of behaviours that can go with each emotion. A dictionary can be used for understanding both their own and other people’s emotions. Relevant pictures and behavioural decryptions are required to fully provide a complete understanding of each emotion. It would be helpful to include the use or purpose of the emotion, such as fear, which can alert us that there is danger nearby. In some instances this writer has used emotion videos of familiar people to form a living emotion dictionary. Although this can be time consuming, with some clients it can be invaluable for learning how to read the emotions of their significant people. Mood diaries can be useful in day-to-day assessment of emotional difficulties. Including a page of emotion words or pictures can facilitate the use of the mood diary (Attwood 2003; Kellner and Tutin 1995; Sofronoff and Attwood 2003). Case study: A picture is worth more than a thousand words This author has found that supplementing the written word with stick figure cartoons or simple drawings has been widely accepted, even with high functioning clients with strong reading skills. Victor had a diagnosis of high functioning autism, and was highly verbal with strong reading skills. He repeatedly went into a rage in the cafeteria, but could not articulate why. It was discovered that Victor would use the incorrect name for what he wanted, often substituting another food name from the menu. Victor needed to point to the picture before the correct label was verbalized. This writer was able to determine that, for him, having a picture as well as the words alleviated errors in understanding and communication. With this in mind, this writer tends to offer drawings of important concepts to facilitate understanding.

General Strategies and Modifications for Cognitive Behavioural Therapy

85

COGNITIVE RESTRUCTURING People on the autism spectrum tend to have errors in logical thinking, cognitive distortions, and mistaken beliefs. Logic on the autism spectrum is markedly different from what is considered to be normal logic, but makes sense once the practitioner examines it from the perspective of someone on the autism spectrum who may be basing the logic on mistaken assumptions and lack of information. Often the cognitive mistakes arise from a lack of information that would commonly be available to a person not on the autism spectrum, combined with difficulties understanding the invisible social rules, as people with ASD have difficulty in correctly inferring social rules, and may have trouble understanding complex cause and effect relationships. People with ASD are frequently literal and polarized thinkers and have faulty underlying assumptions. Often they cannot predict the consequences of their actions. They typically misread context and come to the wrong conclusions. This may lead to cognitive distortions (Attwood 2003; Meyer 1999; Portway and Johnson 2003; Prestwood 1999). Cognitive restructuring can be used with clients on the autism spectrum, including those with mild to moderate mental handicaps, as it has been effectively used with people with below average intelligence. Cognitive restructuring is not recommended when the client is out of touch with reality or locked into inflexible thinking. Cognitive disputing, which is the process of challenging cognitive distortions with more realistic thoughts, may not be applicable with clients who do not have the metacognitive ability to analyze their thoughts, but rational coping statements can be quite effective (Gandy 1997; Grave and Blissette 2004).

The process of cognitive restructuring The process of cognitive restructuring will take several sessions, as each session will likely cover one aspect of cognitive restructuring. This writer has found that it takes several sessions to practise the entire process before the client is proficient with cognitive restructuring between sessions. For some clients, skill transference is aided by coaching and support of family members and school personnel between sessions.

86

Counselling People on the Autism Spectrum

It has been this author’s practice to explain the rationale of cognitive restructuring through the use of a mobile that has three moving parts. These parts consist of thoughts, feelings, and actions (see Figure 3.4). The parts of the mobile are moved to demonstrate the interactions of thoughts, feelings, and actions. By moving the thought component of the mobile, this writer can demonstrate how actions and feelings follow, or are the result of thoughts.

THOUGHTS

Use a small stick or dowel to hang the three pieces from the main string as in illustration below.

FEELINGS

ACTIONS

Figure 3.4 Thoughts, feelings, and actions mobile The interactive dynamics between feelings, thoughts, and actions may be difficult to grasp for people with ASD. This writer has used a mobile to demonstrate the interaction between cognition, affect, and behaviour. The demonstration involves moving one part of the mobile and directing the client to observe what happens to the other parts of the mobile. For example, if a counsellor wished to demonstrate how thoughts impact feelings and behaviour, the counsellor would take the thoughts part of the mobile and move it, directing the client to observe what the other parts do. This demonstrates how change in one area, such as cognitive change, affects change in both behaviour and affect.

General Strategies and Modifications for Cognitive Behavioural Therapy

87

Cognitive distortions can be described or explained as mistaken thoughts or thought poisons. For some computer literate clients use of the term “thought virus” may be helpful. Cognitive restructuring becomes the tool to use to correct mistaken thoughts, create helpful thoughts, provide an antidote for poisonous thoughts, or as a virus scanner and checker for our computer brain (Sofronoff and Attwood 2003). Visual aids help to identify cognitive distortions and the process of replacing distortions with coping thoughts (see Table 3.1 and Figure 3.5). Often clients are unable to give examples of cognitive distortions until a troublesome incident is reviewed step by step. Often they do not remember what thoughts they may have had, and sometimes the thoughts are images, which need to be examined for faulty or distorted perceptions (Frith and Happé 1999; Grandin 1996). Sometimes role playing the situation can uncover the cognitive distortions (Cormier and Nurius 2003). When the client can identify distorted thinking, their homework becomes recognizing and recording cognitive distortions to bring to the following session. It is useful to warn clients that there will be some distorted thinking about the usefulness of what they are being asked to do, and that these thoughts should be recorded as well. Clients are given a notebook specifically for that recording, with some examples of their cognitive distortions as models of what to look for. In the next session the client begins to learn to identify what cognitive distortion was made (Cormier and Nurius 2003). For this, the use of Table 3.2 as a cheat sheet and visual guide is helpful (Burns 1980). Jointly in session the counsellor and client go through the recorded thoughts and attempt to identify the cognitive distortions contained in each. It may take one or two sessions before the client demonstrates that they can identify the thinking errors. It is preferable to have the client place each cognitive distortion on a separate page to minimize confusion and visual overwhelm. Cognitive distortions are often sorted by their environment, and separated by use of notebook dividers. This adaptation allows clients to look up common distortions that occur in a particular setting to review coping thoughts.

88

Counselling People on the Autism Spectrum

Table 3.1 Cognitive restructuring chart Common cognitive distortions or poisonous thinking: • All-or-nothing (black and white) • • • • •

thinking Overgeneralization Mental filter Disqualifying the positive Jumping to conclusions Mind reading

Automatic thoughts

• Fortune telling • Magnification or minimization • Emotional reasoning • “Should” statements • Labelling and mislabelling • Blaming others • Personalization

Cognitive distortions – poisonous thinking

Realistic responses – antidote thinking

JKL

Questions to ask: Does this thought help me stay calm? Does this thought help me cope with the situation? • If yes, then it is a realistic response or antidote. • If no, then this is a cognitive distortion, or poisonous thought.

The next step is to come up with some coping or helpful thoughts (Cormier and Nurius 2003). This is where, in this writer’s experience, clients have the most difficulty, as they often have difficulty coming up with solutions (Baron-Cohen and Wheelwright 2004). Sometimes offering several possible coping thoughts and having the client choose from them is helpful (Attwood 2003). Framing these coping thoughts

General Strategies and Modifications for Cognitive Behavioural Therapy

89

as thoughts that other people on the autism spectrum may have, which may be similar to the client’s possible coping thoughts, can be useful. For some clients, pairing an antidote thought to a cognitive distortion is the most that can be gained (Gandy 1997). They may not be able to identify the schemata underlying their cognitive distortions. It is recommended that clients review coping thoughts prior to engaging in various activities, such as before going to work or school. This can be referred to as a booster shot, to prevent the thought viruses from making the person feel bad. Here is an example of unhelpful and helpful thoughts. Unhelpful thought:

Helpful thought:

I’ll never get it right. I’m a failure.

I did okay. I passed. Next time I’ll study and do better.

Here is a place to put your own unhelpful and helpful thoughts. How do they make you feel? Your unhelpful thought:

Your helpful thought:

Figure 3.5 Worksheet of helpful and not so helpful thoughts This is a worksheet to teach cognitive restructuring. The illustrated facial expressions highlight how different thoughts can result in different emotions. Clients are encouraged to provide their own thoughts and related feelings to delineate how their thoughts relate to their emotions.

90

Counselling People on the Autism Spectrum

Table 3.2 Definitions of cognitive distortions All-or-nothing thinking. You see things in black and white, all-or-nothing categories. If you get one mistake in an exam, you see yourself as a total failure. People are either superior to you or inferior. Overgeneralization. You see one single negative event as a never-ending pattern of defeat. Mental filter. You focus only on the negative, filtering out all positive things that have happened. You just do not see the positives even when they are right in front of you. Disqualifying the positive. You reject all positives and minimize them by insisting that they don’t count and are not important. You just do not see the positive. Jumping to conclusions. You make negative assumptions without sufficient information. Mind reading. You think you know what others are thinking, but have not asked them what they think. Fortune telling. You predict that something will turn out badly before trying it to see if it really will turn out badly. Magnification (catastrophizing) or minimization. You blow negative things out of proportion until they are so large that they overshadow everything else and you minimize positive things until they are insignificant and too small to be noticed. Emotional reasoning. Your emotions form the base of your logic. If you feel bad, then the situation is bad. If you “should” do something, that means that you are a bad person if you don’t do it. If someone else “ought to” do something, he or she is a bad person if he or she does not do it. “Should” statements. Labelling and mislabelling. This is using labels to overgeneralize, such as thinking you are a “loser” as part of who you are, when you don’t win the lottery. Blaming others. You blame others and do not see how you contribute to the situation. Personalization. You blame yourself as the cause of negative things, but see others or luck as the cause of positive things. Note: Adapted from Burns (1980).

General Strategies and Modifications for Cognitive Behavioural Therapy

91

Attribution of actions Often people with ASD will frequently blame others for the consequences of their actions, or take the blame for others’ actions. They are not aware of how their actions affect others (Baron-Cohen and Wheelwright 2004). Sometimes the person with ASD may act omnipotently or arrogantly when they do not perceive themselves as being in control of the situation. In this case, specific individuals may be held responsible for the outcome and may be targeted for retribution if the outcome is not what the person with ASD deems as the desired outcome. The person with ASD does not perceive their contribution to the outcome in this situation (Aston 2003; Attwood 2003). When the client has low self-esteem, they may feel personally responsible for everything, and may also believe that they are helpless to change the situation or change their own abilities. This learned helplessness is common and may contribute to feelings of anxiety and perhaps guilt (Aston 2003; Attwood 2003). Attribution retraining is where the client examines the situation and correctly attributes responsibility in the situation (Cormier and Nurius 2003). Through logic and examination of the situation, the client learns a new perception of themselves. Often this is accomplished by drawing the situation into a cartoon. Using a cartoon format you can demonstrate cause–effect reactions as well as explore other people’s possible intentions and thoughts (Kerr and Durkin 2004).

Make it visual and concrete Strategies that make cognitive processes visual tend to be more useful with people on the autism spectrum than verbal ones. Using a notebook for cognitive restructuring with cheat sheets listing the cognitive distortions and the client’s common cognitive distortions provides them with a visual reminder as well as notes to refer back to when needed. For some clients, a list of cognitive distortions is used so they only have to circle or highlight the type of distortion (see Table 3.1). For others, pictures can remind them visually of what cognitive restructuring is about (see Figure 3.6). Pictures can be created in a storybook fashion to show the situation and the process of cognitive restructuring. Using pictures to rehearse

92

Counselling People on the Autism Spectrum

Automatic thought They’re laughing at me! That’s not very nice! Grrr!

Ha! Hee-hee! Ha ha! Boy, was that ever funny!

Coping/realistic Thoughts Ha! Hee-hee! Ha ha! Boy, was that ever funny!

Oh… Maybe they’re talking about that new movie… Not me… It’s okay that they are laughing.

Figure 3.6 Examples of visual reframing This cartoon shows cognitive reframing. The use of cartoons to show the difference between automatic thoughts and reframed thoughts enables a clinician to demonstrate the changes in related emotions. This added emotional information may be helpful to people with ASD to understand how cognitive reframing works.

cognitive strategies has shown to be effective with people on the autism spectrum (Groden and LeVasseur 1995). One technique used with children may be helpful for people on the autism spectrum. Friedberg (2002) has child clients write cognitive distortions on old crumpled paper, and trade them in for cognitively restructured thoughts that they write on new clean paper and keep. The old thoughts are taken to a “replace mint” (Friedberg 2002, p.7) to exchange the worn out thought with a new thought, using the analogy of a currency mint that takes in old dollar bills and replaces them with crisp

General Strategies and Modifications for Cognitive Behavioural Therapy

93

new ones. The coping thought is then written on new paper and kept. This strategy takes the abstract concept of cognitive restructuring and makes it concrete and visual – thus easier to understand for someone with ASD. It is similar in form to the previous example of a person with autism spectrum disorder’s idea of flushing cognitive distortions, although perhaps not as colourful.

Choice mapping Even the most profoundly cognitively disabled person with autism exercises choice (Proctor 2001), although they may often not be aware of the consequences of their choices (Baron-Cohen and Wheelwright 2004). A visual way to show choices and possible outcomes is through the use of cognitive mapping of choices. In this manner, the initial choice can be examined with the relationship of the other choices that were made. Responses to the situations are also examined, as the client may have a very limited response repertoire. During attribution retraining, the client and the therapist can explore alternative responses and the possible consequences that could be predicted when the response is given. Attwood (2003) recommends using a list of possible responses to a given situation with adults, and flow charts with children. This writer prefers using flow charts with both adult and child clients, as they clearly highlight the connections between choices and results. Often, when working with children, this writer utilizes both flow charts and drawings, particularly drawing faces to indicate emotions. Sometimes the stick figure drawings and emotion faces have had a greater impact than the flow chart, showing how incidents and actions are linked together. Understanding of situational choices can be facilitated by using visual choice trees or flow charts, with lines that connect the response to a possible outcome (see Figure 3.7). Colour coding may help highlight which person made what choice. This writer has used visual mapping successfully with clients who could not link their actions to others’ responses very well, but who did have a sense that they somehow had played a part. Mapping the choices and linking the actions and consequences in a flow chart format appeared to help my clients link their actions to the outcome, and helped them see what responsibility they had in the outcome. This mapping strategy may not be effective with those

94

Counselling People on the Autism Spectrum

First choice Ask boss for a raise.

Boss’s response Demands you go back to work immediately.

Second choice Get angry. Call boss a rude name.

Boss’s response Boss gets angry. Boss fires you.

NO CHOICE You have to leave your job.

Third choice Struggle to find a job when your boss gives you a bad reference.

Boss’s response She says that she will consider your request.

Second choice Calmly state why you deserve a raise.

Second choice Go back to work.

Boss’s response She says that she will consider your request.

Third choice Arrange an appointment to discuss this later.

Third choice Decide not to look for a job. Go on welfare. Blame your old boss for your loss of anger control.

Fourth choice Go back to work.

Fifth choice Prepare before the interview. Have a list of all the good reasons why you deserve a raise. Prepare to discuss calmly any reasons why you don’t deserve a raise.

Figure 3.7 Sample of a choice and possible consequence chart The choice and possible consequence chart is a useful tool to show the chain of events that are possible from one choice. Choice charts can also show how a single action can lead to a series of events. Colour can be used to delineate choice trees, or to code emotions associated with a choice. In the above example, colour was used to differentiate choices that were more likely to have a positive result from those that would be more likely to generate a negative result. This enabled the client to process the emotional component to the choices he made and the results the choices could bring.

General Strategies and Modifications for Cognitive Behavioural Therapy

95

who cannot see that they play a part in how the scenario unfolds; they first have to realize that their actions have later consequences. Mapping choices can also facilitate exploring different possible choices and consequences. This facilitates building a larger response repertoire as well. Attwood (2003) recommends including choices of self-disclosure to teach clients that others are interested in their experiences and emotional state. Use of choice charts can also indicate where self-disclosure is not appropriate.

Using special interests as a metaphor in therapy Often people on the autism spectrum have special interests that are amenable as metaphors for the process of therapy (Attwood 2003; Jacobsen 2003; Meyer 1999). An example would be for someone who enjoyed watching Star Trek: The Next Generation and liked the character Lieutenant Commander Data (an android) to consider a situation where Data has to understand the emotions of others so that he could adjust his behaviour to fit in with the crew. The client would be able to use this metaphor as a way to determine what strategies could be used, and how to determine progress in emotional understanding, from the perspective of someone who has difficulties with lack of feelings and emotions.

Relapse prevention Framing relapses as a normal part of the change process addresses the process of all-or-nothing thinking and perfectionism that can occur with behaviour changes. Relapse prevention is a crucial component when working with people on the autism spectrum, as they will not anticipate relapses and have difficulty problem solving when relapse occurs (Grave and Blissette 2004; Laurent and Rubin 2004).

Goal setting Goal setting may appeal to many people on the autism spectrum, as it is a concrete and measurable way to assess progress. Good goal setting is specific, which appeals to people with ASD. Learning to set goals and subgoals is part of learning to plan, a weakness of many people on the autism spectrum. Use of a goal-setting worksheet with spaces provided

96

Counselling People on the Autism Spectrum

for progress evaluation is helpful (Cormier and Nurius 2003; Hurlbutt and Chalmers 2004). Many people on the autism spectrum are unable to break down a task into smaller steps. Often clients need support creating a task analysis to determine specific steps. Mapping the steps visually, such as using a checklist format or flow chart, helps the client track progress as well as visually showing how each step is linked to another. This linking helps the client understand the progress of meeting their goals (Attwood 1998).

TRANSITIONS People with ASD may have difficulty switching from one activity to another, often referred to as transitions. Transitioning from one activity to another can cause anxiety and confusion. Using visuals as cues and scripts for transitions enhanced their predictability and lowers the confusion and possible crisis situation. Provide advance warning that the transition will be coming, and give the person time to prepare to get ready for the transition. Often questioning the person about what is happening next can help them orient to their visual schedule or list that lets them know what is next (Attwood 1998; Ory 1995).

Special case in transitions Some people with ASD tend to perseverate on the next activity to the exclusion of being able to accomplish the prior task. For these people, their anxiety increases when they know that a particular activity is going to happen. In this case, you minimize anxiety by lessening the advance warning for the transition to just before it is going to happen (Ory 1995). When prompting for a transition, it is this writer’s professional experience that sometimes the person with ASD is immediately ready to transition. In this case you transition immediately. If you are in a situation where the transition cannot happen immediately, provide the person with the contextual marker of when the transition can happen, such as when you have gotten your car keys. One of the most difficult things that someone with ASD can cope with is being told that it is time to transition, and then being told to wait because someone else is not ready. This is

General Strategies and Modifications for Cognitive Behavioural Therapy

97

doubly confusing, as often the cue to transition is interpreted as an indication that the change will happen immediately, and, when they comply with this immediate change, they are told the rule has changed and now they have to wait.

STRUCTURING CHOICE FOR SUCCESS People with ASD may have difficulty choosing between options when more than one is presented. Often the ability to choose from several options requires the ability to organize and weight choices in your head, a task that is difficult when you have executive function difficulties. It may be best to offer limited choices, such as a “yes” or “no” choice or a choice from two or three options. It has been this writer’s professional experience that, if the person is not interested in any of the offered choices, they will be able to tell you, through words or actions, that none of the choices are interesting. Often people with ASD are unable to generate choices, but can recognize whether a choice is something they would like. One useful strategy is a choice board. This is a written or picture chart that shows the possible choices for a time period, like free choice time, or what to do on a coffee break. The person can use the choice board to help them decide what choices they would like. Task lists are a similar strategy, where the tasks that must be completed in a day are listed and the person with ASD chooses what task is first, and what will come next. When the task is done, it is crossed off the list. Sometimes it is easier for someone with ASD to correct you than to accept help or guidance. For example, it may be easier to hand someone the wrong coat when wanting them to get ready to leave. When they correct the mistake, you have the opportunity to let them know that their idea of getting ready to go now is a great idea (Ory 2002b). Creating lists and scripts for the person on the spectrum to proofread and correct can be a way to facilitate acceptance of a visual tool. In this author’s professional experience, offering visual supports in this manner places the client in the position of being a capable helper, which facilitates acceptance. Few clients have refused a copy of the proofed work, once they have read the initial incorrect work.

98

Counselling People on the Autism Spectrum

Case study: Proofread to success Gordon was a very intelligent young man who had PDD-NOS. Gordon was extremely resistant to intervention, and in denial of his disability. Gordon was a spelling and grammar perfectionist. This writer presented scripts, checklists, and Social Stories™ to Gordon for proofreading, ensuring that there was at least one mistake for him to find (and often many more). When Gordon proofread the materials, he retained the information. In many cases, Gordon asked to have a finished copy. Asking Gordon to utilize his proofreading expertise allowed him to benefit from the materials without feeling inadequate.

Automatic refusals Some people with ASD will automatically answer “no” to any choice, whether it is a choice that they usually like or not. Often this initial refusal is a strategy to buy time, or has been the learned response for someone who has a history of being asked to comply with things they were not interested in. To address this, talk about the possible choices without expecting any response, and discuss the positives and negatives of each choice. This gives the person with ASD the answers to the questions that he didn’t think to ask before he has to make a choice. It also gives him or her time to think before making the choice. With people who say “no” to any offered choice, prepare them that they will be offered a choice within five minutes, and briefly outline what the choices will be. For those with language processing difficulties, follow up with some kind of visual to represent the choices. Often, once the person with an autism spectrum disorder is prepared to make a decision, they will accept a choice or provide an alternative. Their initial refusal may stem from difficulty in shifting attention quickly and the need for extended processing time to make a decision.

PROBLEM-SOLVING APPROACHES Effective problem solving can be taught to people on the autism spectrum. Those with ASD often have difficulties with finding solutions. The difficulty may be in generating solutions, but difficulties in assessing

General Strategies and Modifications for Cognitive Behavioural Therapy

99

the appropriateness of the solution may also be a problem (Baron-Cohen and Wheelwright 2004). It is important to assess the person’s current method of problem solving to gain an understanding of what skills they already have, and where they may make errors in thinking (Miranda and Presentación 2000). Executive functioning difficulties, such as inhibition of responses and planning ability, negatively impact problem-solving ability. Difficulties with perspective taking compromise the ability to fully comprehend the consequences of one’s actions. Challenges with executive functions, such as the ability to organize and assess plans, interfere with the ability to problem solve. Correctly reading others’ emotions is a key component to social problem solving. Problem solving also requires the ability to remain calm (Laurent and Rubin 2004; Miranda and Presentación 2000). Problem solving can be broken down into five components. These are: defining the problem, gathering information, generation of alternative solutions, decision making, and evaluation of the solution (Cormier and Nurius 2003). Key phrases such as “I can handle that” and “I am getting nervous. I need to calm down” (Miranda and Presentación 2000, p.173) are taught as self-talk coping strategies. When teaching creative thinking for the brainstorming part of problem solving, focusing on thinking and problem solving, instead of right or wrong answers, may facilitate learning. Once the ideas are collected they can be analyzed to determine their usefulness. Provision of a problem-solving script, perhaps in a checklist format, will help someone on the autism spectrum to organize the sequence of problem solving (Laurent and Rubin 2004). When designing worksheets to teach problem solving, this writer includes questions to help with the decisionmaking process (see Table 3.3). These questions ask specifically if the solution is fair to everyone, and assess if anyone will get hurt. People on the autism spectrum often need reminders to consider those questions to determine if their solution is appropriate, as their answers do not come spontaneously.

100

Counselling People on the Autism Spectrum

Table 3.3 Steps to consider when solving a problem YES

NO

Is it fair to everyone?

o

o

Is it safe?

o

o

Will everyone feel okay about the solution?

o

o

Will something bad happen if I try my solution?

o

o

Will it work?

o

o

Totals: If all yeses, do it!

If there are any answered “no”, don’t do it!

SELF-MONITORING AND SELF-MANAGEMENT Self-monitoring teaches people to monitor their own behaviours and deliver appropriate reinforcements once the behaviour has been complete. Self-management through self-monitoring involves an internal locus of control and has been shown to be effective with people on the autism spectrum, both those that are higher functioning and those that are not. Self-management involves defining the behaviour that is being monitored, and teaching the person to use a tool to monitor the behaviour as well as deliver their own reinforcement. Targeting the behaviour for self-management should be a collaborative process between client and therapist. Data on the behaviour can naturally be collected through the use of checklists and tallies (Cormier and Nurius 2003; Quinn and Swaggart 1994). Self-monitoring strategies can include the use of checklists, which provide cues for what is expected within the items to be checked off (Fullerton and Coyne 1999; Willey 1999). Use visual cues, whether written words or pictures, to describe the behaviour that is being monitored. Use of concrete, tangible markers may work best for lower functioning people (Quinn and Swaggart 1994). When designing self-monitoring programs, the criteria for reinforcement are built right into the sheet in the form of filling in all the boxes before the reward is earned (see Figure 3.8).

General Strategies and Modifications for Cognitive Behavioural Therapy

101

Today’s jobs 1

Complete math homework.

S

2

Complete social studies homework.

S

3

Study for math test. Do 10 practice math questions.

£

4

Get your things ready for school tomorrow.

£

5

Make your lunch for tomorrow.

£

When that’s all done, you can play on the computer! Figure 3.8 Sample self-monitoring checklist Sample checklist used for self-monitoring work habits. Criteria for reinforcement and the cue to self-reinforce are built into the sheet.

One of the important pieces of self-monitoring to teach is that of honest recording. Many clients are very honest, but a few are reluctant to record when they have not met criteria. When teaching self-monitoring, teach record keeping and reinforce accuracy and honesty above and beyond the reinforcement for meeting criteria for the behaviour. Engage in repeated random inquiries to see if honesty is being maintained. Over the period of many sessions, the client will have become proficient enough that random checks for honesty will no longer be required.

SELF-TALK Some people on the spectrum engage in self-talk that can be less than helpful for them (Attwood 2003). Self-monitoring self-talk can be, in and of itself, a successful intervention. Sometimes data collection can impact behaviour, as taking notice of behaviour can influence the frequency with which a person will engage in that behaviour. For example, taking data on negative self-talk can decrease it, as the person becomes more self-conscious of making negative self-statements, or it can increase in frequency as the person becomes more focused on the negative things that they may say about themselves. What may be a more useful strategy, however, is to focus on the opposite of negative self-talk,

102

Counselling People on the Autism Spectrum

which is positive self-talk (Burns 1980). Data collection on positive self-talk can increase the likelihood that it will increase, as attention and focus are placed on the behaviour. As the individual gives positive self-talk more focus, they begin to notice the positive in themselves, which is likely to lead them towards making more positive self-statements, eventually resulting in some improvement in mood as they focus on the positive. In this writer’s professional experience, collecting data can increase the behaviour. Data collection on the behaviours that you would like to see more of can increase those behaviours, provided that the person with ASD can successfully perform those behaviours independently. The use of self-monitoring of positive self-talk has proven to be an effective strategy to decrease negative self-talk and positively change overall daily mood ratings.

CHAPTER 4

Depression and Treatment Approaches Depression is common among people on the autism spectrum, particularly those who are higher functioning, and may be the most common psychiatric diagnosis in this group (Ghaziuddin et al. 2002; Hurlbutt and Chalmers 2004). While rates of depression in the general population are between 2.3 and 3.2 per cent for males and 4.5 and 9.3 per cent for females (Glenn, Bihm and Lammers 2003), rates in persons on the autism spectrum may be as high as 52.2 per cent, with 23.2 per cent having major depression (Ghaziuddin et al. 1998). Comorbid depression rates range from about 4 to 58 per cent (Lainhart 1999). Severe forms of depression (at least two standard deviations above the general population means) occur in about 17 per cent of people with high functioning autism or Asperger’s (Sofronoff et al. 2005). Most of the reported cases are young adults (Ghaziuddin et al. 2002). Polarized, black-and-white, or “all-or-nothing” (Cormier and Nurius 2003, p.444) thinking, and less imaginative thinking of “constricted thought processes” (Portway and Johnson 2003, p.440), and limited ability to problem solve, tend to correlate with depression. These types of thinking are commonly found in people on the autism spectrum. They can be amenable to cognitive restructuring and other cognitive behavioural approaches (Attwood 2003; Portway and Johnson 2003).

DIAGNOSING DEPRESSION Vulnerability to depression may be more likely among higher functioning people with autism than those with comorbid mental retardation, as

103

104

Counselling People on the Autism Spectrum

those with normal or high intelligence tend towards reporting lower self-worth and self-confidence. There is some evidence to suggest that the higher functioning people on the spectrum, who have higher reported social adjustment and more ability to understand others, tend to view themselves more negatively. Social isolation and lack of social supports, such as having a close friend in which to confide, can exacerbate the risk of depression. The tendency to attribute failures to individual efforts and characteristics, combined with the tendency to see success as a factor of chance, occurs in people on the autism spectrum who are prone to depression (Attwood 2003; Ghaziuddin et al. 2002; Portway and Johnson 2003). Symptoms of depression in individuals with ASD may be similar to those of the general population, such as changes in appetite, sleep, crying spells, depressed mood, and loss of interest in previously favoured activities, or may take on unique forms. There may be an overall deterioration of functioning. Depression may be expressed through behavioural changes, such as changes in ritualistic behaviour, perseverative behaviour, withdrawal, or obsessive-like focus on high interest activities. Ritualistic behaviours may show an increase or decrease. It may be that the ritualistic behaviours increase to relieve discomfort, or may decrease when they no longer decrease discomfort. Increases in perseverative behaviour may be an indication of depression, or of anxiety that is often comorbid with depression in individuals with autism spectrum disorders (Ghaziuddin, Aleissi and Greden 1995; Ghaziuddin et al. 2002). An increase in social withdrawal is another indication of depression. Social withdrawal must be compared to previous levels of social activity, as many individuals with autism spectrum disorders do not regularly engage in a lot of social activity outside work and school. Social withdrawal includes withdrawing from previously enjoyed social activities, and may include a lack of interest in going to work or school (Ghaziuddin et al. 2002; Gustein and Whitney 2002; Orsmond, Krauss and Seltzer 2004). Case study: Depressive withdrawal Todd was a high school senior who had Asperger’s syndrome. His parents became concerned when he began to withdraw into his

Depression and Treatment Approaches

105

room after school, refusing to come out even for meals. Todd became totally absorbed in computer games after school, often staying up throughout the night. Todd stopped returning phone calls from his one friend, and became reluctant to go to school. Shortly after that, Todd expressed the desire to commit suicide. Withdrawal into fantasy, whether through video or computer games, fantasy stories, or incessant daydreaming, may be indicators of depressive withdrawal. Often individuals with ASD retreat into fantasy as an escape from their unhappy lives. Preoccupation regarding the fantasy worlds may be an indication of unhappiness and possible depression (Attwood 2006). Onset of depression often occurs around puberty (Ghaziuddin et al. 2002). Puberty is a time of confusing physiological change, as well as a time where social dynamics change. This may be the time where academic expectations change, with an increase in demands. It is the writer’s opinion that the time of puberty may be when the adolescent who has an autism spectrum disorder becomes aware of his differences from his peers, and when peers become less tolerant of differences. Social rejection may become a trigger for a depressive episode. Case study: Losing the dating game James was in his graduate years of high school. He was very intelligent and was diagnosed with autism. James became aware of the high school expectations around dating. He became extremely depressed when he discovered that a neighbouring girl, whom he had been friends with until high school, was dating a different young man. James was very depressed when he became aware that he was not interesting to members of the opposite sex, and when he realized that none of his previous male friends wanted to spend time with him. He expressed no interest in living, and could not fathom what he could do differently to make and maintain friends. James gained some hope when he discovered that there were ways to learn social skills that would help him possibly make friends, and even, possibly, a girlfriend.

106

Counselling People on the Autism Spectrum

TREATMENT APPROACHES FOR DEPRESSION Often the first line of treatment for depression can be the use of antidepressant medication (Attwood 1998; Ghaziuddin et al. 1998). Cognitive behavioural therapy has also been shown to be effective, often in conjunction with antidepressant use. It is essential to be aware of whether a client is taking medication for depression to monitor side effects and benefits. Pharmaceutical approaches to depression may have unwanted side effects, some of which may result in the client refusing to comply with the prescribing physician’s directions regarding taking the medication. Often the positive effect of taking antidepressant medication disappears when it is discontinued (Burns 1980). The positive effect of using cognitive behaviour techniques tends to become habitual over time, and can provide longer lasting benefits (Glasman, Finlay and Brock 2004).

PHARMACOLOGICAL APPROACHES Antidepressant medication is often prescribed for individuals on the autism spectrum, although there is little efficacy research reported with this population. Selective serotonin reuptake inhibitors (SSRIs) are often used, followed by non-SSRI medications. Neuroleptics are also sometimes used but may not show good results (Ghaziuddin et al. 2002). It is important to know the medication that a client may be taking and the side effects that have been noted with use in the autism population.

COGNITIVE BEHAVIOURAL THERAPY Cognitive behavioural therapy (CBT) has been shown to be effective in treating depression in adolescents and in adults in the general population (Beck and Weishaar 2000; McLellan and Werry 2003) and those with autism spectrum disorders (Ghaziuddin et al. 2002). There are no side effects associated with using cognitive behavioural therapy, unlike many medications used with people on the autism spectrum. Cognitive behavioural interventions facilitate the prevention of reoccurrence of depression and better long-term results when medication is discontinued (Beck and Weishaar 2000).

Depression and Treatment Approaches

107

Cognitive behavioural interventions Interventions for depression focus on changing the distorted thinking that accompanies depression and reality testing to disprove distortions, called cognitive restructuring. Homework is a key component (Cormier and Nurius 2003; Sofronoff and Attwood 2003). Exploration of depressive schemata is most useful with people who have good abstract reasoning abilities, and often does not occur with those who have ASD (Gandy 1997). Cognitive restructuring is discussed in more detail in Chapter 3. Depression may best be viewed from a chronic condition perspective in this population, in that successful treatment is ongoing. Depression does not become cured overnight. Clients need to be prepared for ongoing use of CBT strategies to combat a return of full-blown depression. Strategies need to be applied early on, before the emotions of depression inhibit the ability to think (Glasman et al. 2004). It is this writer’s professional experience that the lethargy associated with depression is frequently exaggerated in persons on the autism spectrum. The tendency to become emotionally stuck exacerbates the lethargy that is common with depression. Learned helplessness can become a factor, impeding the client’s sense of self-efficacy towards recovering from depression (N. Ory, personal communication, May 19, 2004).

Cognitive distortions common to depression People on the autism spectrum tend to have many errors in thinking and logic, have faulty underlying assumptions, and cannot predict the consequences of their actions. They often come to the wrong conclusions due to misreading contextual cues and the secondary messages of conversations. The most common types of cognitive distortions that people on the autism spectrum engage in are all-or-nothing thinking, overgeneralizing negatives and filtering out or disqualifying the positive, mind reading and fortune telling, and blaming others. The least likely cognitive distortion is emotional reasoning (Aston 2003; Attwood 1998). Refer to Tables 3.1 and 3.2 (pp.88, 90) for a sample worksheet and list of cognitive distortions.

108

Counselling People on the Autism Spectrum

Schematas are the underlying theme to a person’s cognitive distortions and reveal the core beliefs driving the distorted perceptions (Cormier and Nurius 2003). People on the autism spectrum have difficulty with finding the central coherence or theme from pieces of information (Martin and McDonald 2004; Teunisse et al. 2001). They may have difficulty with schemata identification, but some people who are higher functioning may be able to benefit from working with their schemata to address global patterns of faulty core beliefs.

Reframing People on the autism spectrum tend towards cognitive inflexibility (Tsatsanis 2004). This can lead to “‘functional fixity’ – that is, seeing things from only one perspective or being fixated on the idea that this particular situation, behaviour pattern, or attribute is the issue” (Cormier and Nurius 2003, p.394). They become stuck in one-way thinking, without being able to see that there are alternative possibilities. Reframing the meaning of a situation or attribute is a cognitive behavioural technique to open thinking towards alternative possibilities, thereby creating a change in meaning, which will affect behaviour. Reframing context provides a positive function or usefulness for behaviour and reduces generalization. Care must be taken when reframing with people on the autism spectrum, as they may have idiosyncratic meaning attributions that are not amenable to reframing, or cannot discriminate between contexts where a behaviour is acceptable. Cartooning can facilitate reframing and provide sufficient boundaries for contextual reframes (Gray 1994b, 1995). An example of this is found in Figure 3.6 (p.92). The client draws out his interpretation of the situation, and the counsellor draws the reframed situation (Gray 1994b). Reframing in this visual format resembles the use of comic strip conversations, which have been shown to be very effective with people on the autism spectrum (Attwood 1998; Gray 1994b, 1995). Accepting that one has a diagnosis of autism can be difficult. Cognitive restructuring regarding one’s disability may be effective as a disability tends to remain permanent, but how one thinks about the disability is amenable to change. It is possible to use cognitive restructuring

Depression and Treatment Approaches

109

to effect change in one’s core beliefs about life. However, this may not be effective with people who have more severe forms of autism (Gandy 1977). Case study: I’m special John is an adolescent who was having difficulty accepting that he had an autism spectrum disorder. The writer spoke with John about having autism, which is a rare condition that made John rather unique. John came to reframe it as being special, as only a few people have autism, and many people who have autism can do special things. In a typical black-and-white thinking fashion, John decided that he did not want to be typical in any way, as that would mean that he would not be special anymore. With that belief, John resisted any help with any area in which he was having difficulties, particularly difficulties with his peers. With a little more cognitive restructuring John was able to see that he could still be special and fit in with the people not on the autism spectrum as well, which is probably a more helpful endeavour.

Keeping score: using thought tallies One tool that can be helpful in working with clients who are very concrete is a thought tally. Sometimes this can be framed as a game, where the client wins if there are more positive thoughts than negative thoughts. Each day (or hour, depending on the time frame chosen) is a new game. Along with the game score, on the scorecard (see Figure 4.1) there is a mood thermometer. The mood thermometer helps to show clients that their mood is dependent upon their thoughts (Burns 1980; Cormier and Nurius 2003). Case study: Positive thoughts game For some clients, the game consists of only monitoring positive thoughts, and attempting to have one more positive thought than the day before to win the game. This was effective with Sam, who would perseverate on a negative thought until he became distraught. Enlisting his perseverative tendencies, he began to perseverate on positive thoughts only, as these were the thoughts he

110

Counselling People on the Autism Spectrum

was asked to pay attention to. It is of note that Sam initially thought the whole idea was silly, but was amenable to the instruction to try it anyway for a couple of weeks. As expected, Sam’s perseveration on positive thoughts resulted in an increase of his self-report of positive thoughts as well as an increase in his self-report positive mood. This change in mood was observable by those who lived and worked with Sam. What’s your score? Positive thoughts (good guys)

Negative thoughts (bad guys)

Overall, how did you feel today?

J K L Total:

Total:

Figure 4.1 Positive thoughts game scorecard Scorecards are helpful tools to keep data on behaviours. Using an analogy of winning or losing a game can provide motivation to track the data, especially if there are incentives for keeping score. For clients who are uninterested in games and scores, a science experiment analogy can be used. The above example tracks positive and negative thoughts. The emotional thermometer provides a graphic display of the general emotion for the day, giving a visual link between the number and type of thoughts with the overall daily emotion. For people with ASD, this provides a link between thought and emotion.

Thought stopping and distraction For some people on the autism spectrum, identifying and refuting cognitive distortions may be too difficult to be effective (Gandy 1997). For these people, a thought stopping approach may be more effective. Thought stopping involves two concrete steps of identifying when you

Depression and Treatment Approaches

111

are becoming depressed, and doing something you would enjoy that would distract you from the feelings. For many clients this simplified approach may be what they can handle. An addition of coping statements, such as expressing confidence that doing something fun will combat the depression, would prove beneficial (Glasman et al. 2004; Singh, Wahler, Adkins and Meyers 2003).

Addressing lethargy One characteristic of depression is lethargy. This is often seen with people on the autism spectrum who are depressed. Inactivity is exacerbated by fortune-telling cognitive distortions that the activity will be awful. Activity scheduling is recommended to combat lethargy associated with depression. Scheduling has many general benefits for people with ASD such as reducing discomfort and anxiety, thus making this intervention ideal for alleviating discomfort as well as lethargy (Burns 1980; Ghaziuddin et al. 2002; Glasman et al. 2004). Before suggesting to your client that one way to combat the lethargy associated with depression is to get out and do something different, you must assess your client’s social functioning and skill repertoire. It may be detrimental to ask your client to engage in novel social situations without knowing if they have the skill base to do so, or if social anxiety prohibits the use of this technique at this time. It may be preferable to begin with activities the client is skilled at that may not involve intensive social interaction. Inactivity or lethargy may be a tool to avoid stressful social situations, and may be an indication that social skill training is needed (Aston 2003; Sofronoff and Attwood 2003). To assess possible activities, ask your client to make a list of things that they used to enjoy doing, things that they enjoy doing now, and things that they may like to try. This list can be written or done in pictures, including old family photos. Each activity that is tried is rated on an enjoyment visual scale (see Figure 3.3, p.100). Mood is also tracked using a mood thermometer (see Figure 3.2, p.90). Overall improvements can be tracked through the use of these scales.

112

Counselling People on the Autism Spectrum

Case study: Show me Mike, a young adult who had autism, was diagnosed with depression, and was taking a selective serotonin reuptake inhibitor (SSRI) on advice of his psychiatrist. Mike was not showing any improvement. He was spending his days refusing to go to his day program, which he used to enjoy, and would not leave the house. Nothing that his parents or day program workers could say or do helped Mike to leave the house. Mike utilized visual schedules to coach him through everyday tasks, such as personal hygiene tasks. This author built upon Mike’s use of visual schedules. Each day a previously favoured activity was inserted into Mike’s schedule. The activity was shown in full colour photographs. Often the photographs were of past occasions where Mike was shown smiling and participating. When Mike noticed the activities in his schedule he reluctantly complied. While he was out in the community doing his favourite things, he was asked to indicate if he was enjoying himself, often using a happiness thermometer. These daily ratings of activities were collected, often with new photographs added of Mike enjoying himself. When Mike looked back through his activity book, he came to realize that he could enjoy these activities, and came to expect them when they were embedded into his daily schedule. Within two months Mike was willing to participate in the previous activities at his day program that he enjoyed.

HELPLESSNESS AND HOPELESSNESS: FAULTY ATTRIBUTIONS Many people on the autism spectrum do not fully comprehend their contribution to situations, nor do they understand what they can do to resolve problems. Often they cannot see how their behaviour impacted a situation (Aston 2003; Attwood 1999). Using visual choice charts (see Figure 3.7, p.94) can help them to determine how they have contributed to a situation, and to explore alternative actions that they can take. Some clients may completely lack self-efficacy. Self-efficacy impacts the results of therapy. People on the autism spectrum tend towards being cue dependent, which may exaggerate feelings of helplessness, as the ability to respond may be tied to external cueing. In this case, building

Depression and Treatment Approaches

113

client self-efficacy is a primary goal. Demonstrating self-efficacy can include creating a list of things that the person can do, or creating a collage of things the person is good at. Once the client has an understanding that they can have an impact on their environment, you begin to assign homework that is well within their reach. This homework becomes the basis of reality testing to disprove that the client is helpless (Janzen 1996).

Relapse prevention Depression should be viewed from a chronic conditions framework, as depression does not get cured overnight, and relapse is possible if all interventions cease. Keeping depression at bay will be hard work using the strategies provided by cognitive behavioural therapy over a long period of time for continued success. Continual use of CBT has been shown to be effective in keeping full-blown depression at bay. Vigilance in monitoring and planning for relapses is important for ongoing success. Clients on the autism spectrum need to know that depression will not just go away without continual effort on their part. Relapse prevention should be part of a depression treatment plan, with the option for return appointments, or tune ups. The provision of written notes or audiotapes of sessions and techniques may be useful for future reference (Glasman et al. 2004; Sarafino 2002). One tool that this writer has found to be useful is the creation of relapse prevention books for clients. These books have specific individualized instructions regarding different degrees of depression, using a rating scale as the measure. At each stage, suggestions of interventions are made. These books have specific instructions as to what tools may be helpful, with a customized example of the client’s own cognitive distortions and coping thoughts. Included in the book are directions regarding seeking help when depression increases and/or items indicating an increase of risk of harm to self or harm to others have been identified. At the end of the book is a list of community resources that the person can turn to for immediate help, such as community crisis lines. One component in the book is the reminder that the client can call this writer or another counsellor if they are unsure of how they are doing, or if they feel the need for a booster session.

114

Counselling People on the Autism Spectrum

Case study: Stuck in a hole Cathy is a young woman with ASD. Cathy was referred for help with recurring depression. Cathy saw each depressive episode as a complete failure and an indication that she would never get better. Cathy had no comprehension of the treatment for depression as a process. She thought taking medication for depression would cure it forever. This writer worked with Cathy and described depression as a path out of a deep hole that was seldom straight up, and had many slippery sections, where sliding back a little down into depression was to be expected. The writer explained to Cathy that these occasions where backsliding occurred were signals that something like a depressive trigger had been overlooked. This backsliding was normalized to Cathy. This writer helped Cathy develop a book of suggestions for the times when she had slid on her path out of depression. It was framed as a travel guide for when you encounter holes. One of the suggestions in the book was to seek professional help when she got stuck in the hole. This was normalized as well. Cathy reported that her guidebook was very helpful. Just reading it when she was feeling somewhat unsure of herself helped her to feel more in control of the depression. She found that having a book of tools that she could use to combat the depression was a source of both strength and comfort. For Cathy, knowing what to do became a great stress reliever.

CHAPTER 5

Anxiety, OCD, and Treatment Approaches Anxiety is a common feature of autism spectrum disorders and may be almost universally comorbid. Rates of anxiety in the population of people on the autism spectrum range from 7 to 84 per cent (Lainhart 1999). Greater levels of worrying, non-situational anxiety, panic, specific fears, and hypochondriasis have been reported in young adolescents with Asperger’s (Sofronoff et al. 2005). Social deficits can lead to social anxiety, social phobia, and agoraphobia (Attwood 2003). Social anxiety is common. Social anxieties affect the chances of having intimate relationships, reduce levels of social support, negatively impact education, and reduce workplace productivity. Lower education and poor workplace productivity negatively impact career and earning potential (Elliott and Gresham 1991). Obsessive compulsive disorder (OCD), which is a fear or anxiety based disorder, is also common in people on the autism spectrum. Everyday coping with sensory abnormalities, confusing social interactions and social environments, and language impairments, result in elevated levels of daily stress and are likely to contribute to anxiety (Ruberman 2002; Sofronoff et al. 2005). Anxiety is often a factor in attempting to work in a neurotypical world. The confusion of coping with everyday changes, social fluidity, lack of predictability from one moment to the next, and the inability to correctly judge if your actions are acceptable by those around you can result in feelings of anxiety (Hurlbutt and Chalmers 2004). A useful analogy here is that of being dropped into a foreign land with no ability to understand the language and no understanding of the social rules, with the rules being so strange that they make

115

116

Counselling People on the Autism Spectrum

no sense at all, and where different rules apply to different people. No interpreter or guide is available, or the one that is available is completely incomprehensible. This writer would imagine that the experience would be anxiety producing.

DIAGNOSING ANXIETY ON THE AUTISM SPECTRUM Anxiety may be challenging to diagnose for this population. Verbal clients will be able to express dislike or fear as an indication of anxiety, but clients who are less verbal may only have behavioural indicators. This writer’s professional experience is that many clients who are quite verbal show anxiety through behaviour long before they verbalize being uncomfortable. It is this writer’s experience that words do not come easily to someone on the autism spectrum when they are anxious, upset, or experiencing any increase in emotions, including joy. Too often perseverative behaviours are seen as problem behaviours and not signals that the individual is in discomfort or anxious. Changes in behaviour can indicate an increase in anxiety (Ghaziuddin et al. 2002). Perseverative behaviour can be an indication of anxiety (Gillott, Furniss and Walter 2001) or a way to release anxiety (Reaven and Hepburn 2003). Perseverative questioning, social withdrawal, and attempting to “tune out” (Roe 1999, p.251) may also indicate anxiety. Some perseverative behaviour is engaged in for pleasure, and is not a sign of anxiety (Meyer 1999; Reaven and Hepburn 2003). People familiar with the person on the spectrum can help determine which perseverations are stress reducers, if the person himself cannot tell you. Fun and enjoyable perseverations are a form of activity similar to a hobby for people on the autism spectrum, and are more like special interests than perseverations. There is no need to intervene unless these behaviours are preventing the client from fully participating in life.

Childhood anxiety Anxiety in children in the general population is relatively stable, often lasting from two to five years (Gillott et al. 2001). In the not too distant past, childhood anxiety was discounted as something that children would naturally grow out of (Kendall and Choudhury 2003). Children

Anxiety, OCD, and Treatment Approaches

117

on the autism spectrum tend towards being anxious (Sofronoff and Attwood 2003; Sofronoff et al. 2005). Adult anxiety, increased risk of substance abuse, and mood disorders are associated with untreated childhood anxiety (Manassis, Avery, Butalia and Mendlowitz 2004). It would not be unreasonable to assume that untreated childhood anxiety in children on the autism spectrum would have a similarly detrimental effect.

Social anxiety Social anxiety is assumed to come from lack of social competence, hence social skills training with corrective feedback is the most common mode of treatment. Social skills training is covered in more detail in Chapter 6. Often social skill instruction is paired with strategies to reduce anxiety. Once skill level is adequate, cognitive restructuring for social anxiety is used to address the anxious thoughts that occur in social situations. Cognitive restructuring shows the best effect when it is used before, during, and after exposure to social situations. In this use exposure is seen as an opportunity to challenge and disprove inaccurate thoughts (Rodebaugh, Holaway and Heimberg 2004).

Anxious perseveration Perseverative behaviour and the insistence on keeping things the same may be ways to reduce anxiety, or are driven by anxiety. Anxiety has been discussed as being both a consequence of autistic behaviours and a cause of these same behaviours. Stereotypical behaviours and repetitive behaviours may be coping strategies to reduce feelings of anxiety, as these behaviours tend to increase when the person is emotionally distressed or anxious. Obsessions and rituals are likewise possible anxiety-reducing strategies, as interrupting these sequences can cause distress and anxiety. Lack of approval regarding perseverative or stereotypical autistic behaviours can lead to feelings of anxiety, leading to more behaviour, creating an escalating cycle (Gillott et al. 2001; Ory 2002a).

118

Counselling People on the Autism Spectrum

Anxiety and skill deficits Treatments for anxiety are no replacement for being unable to perform the skills required by the situation. It is a faulty assumption that therapies to reduce anxiety will be effective if the skill base to successfully complete the activity or act in the situation is lacking. Issues regarding confusion must be addressed as well, as confusion regarding an activity will result in anxiety. People on the autism spectrum often cannot judge if they are performing a task correctly and may become anxious when unable to determine if they are performing correctly. It is important to provide the person with tangible ways to self-assess their performance (Aston 2003; Attwood 1998; Quinn and Swaggart 1994).

Using a train analogy with anxiety Friedberg (2002) uses the analogy of a train to discuss anxieties with children. This analogy may lend itself well to working with people on the autism spectrum, as trains are often a special interest (Attwood 1998). Friedberg described anxieties as being like a train that is out of control, or a train with no brakes. The client is then asked to draw the train, using whatever colour best represents their anxieties. A track is then drawn, with several stations representing action, mind/thoughts, emotions, physical sensations, who, what, and where. Once the stations have been discussed, and how anxiety interacts at each station, analogies can be made regarding getting control of the anxiety being like putting the brakes on your anxiety train, and being able to steer your anxiety the way you want to. This latter analogy lends itself well to asking the question regarding who is driving the train, and who you want to be driving your train. It is important to remember that people with ASD do not understand comments such as your anxiety is a train, but can understand that anxiety is like a train (Happé 1995), as they are literal thinkers. Case study: Runaway train Tom was an adolescent with Asperger’s syndrome who drew his anxiety as a train speeding down the tracks, heading towards a bridge that ended in mid-air. Coping thoughts and self-calming strategies were introduced as a set of brakes for his train. Cognitive restructuring was seen as putting a switch into the tracks so that his

Anxiety, OCD, and Treatment Approaches

119

train could go a different way, one that did not involve a broken bridge. With this image in mind, he was able to understand the process of learning to control and cope with his anxiety.

COGNITIVE BEHAVIOURAL INTERVENTIONS FOR ANXIETY Cognitive behavioural therapy reduces anxiety in adolescents and adults. It has been shown to be effective with children on the autism spectrum (Sofronoff and Attwood 2003; Sofronoff et al. 2005). Cognitive behavioural strategies and problem-solving approaches have been shown to have a positive effect on emotional regulation. Cognitive behavioural interventions target the distorted thoughts that occur with anxiety and the behavioural avoidance that accompanies it. The most commonly used interventions are cognitive restructuring, desensitization, and thought stopping (Burns 1980; McLellan and Werry 2003).

Cognitive restructuring for anxiety Anxiety-producing cognitive distortions tend to overestimate risks and threats in a situation, and thoughts tend to catastrophize situations. Avoiding the situation is reinforcing, as the feelings of anxiety decrease when the situation can be avoided, reinforcing further avoidance and cognitive distortions (Cormier and Nurius 2003). When working with distorted thinking around anxiety, a distinction is made between the coping self and the anxious self, with anxietyproducing cognitive distortions attributed to the anxious self and the accurate, rational thoughts attributed to the coping self (Manassis et al. 2004). Cognitive distortions are related to “poisonous thoughts” (Sofronoff and Attwood 2003, p.5) and coping thoughts as an antidote. A list of cognitive distortions is found in Table 3.2 (p.90). Chapter 3 includes a more comprehensive and detailed set of instructions for teaching cognitive restructuring. Here are the details specific to treating anxiety. This writer has found that the use of visuals is preferred, to accommodate the visual learning style of people on the autism spectrum. A useful metaphor is that the cognitive distortions are like thought poisons, and the rational responses are antidotes, and that

120

Counselling People on the Autism Spectrum

anxiety and fear are like paralyzing poisons that make it more difficult to act (Sofronoff and Attwood 2003). People on the autism spectrum often have unusual or irrational fears (Attwood 1998; Janzen 1996). It is important to normalize fear and describe when fear is functional, such as when there is actual danger. Specific examples, like that of a fire drill when there is no fire, can be helpful. Anxiety problems are like when you know that the fire drill will be occurring, and you feel anxious even when you know you are safe. Feeling anxious when you are not sure there is a real fire or when you smell smoke is a good thing. Your fear is appropriately warning that you may be in danger. Anxiety is also functional if you are anxious about an upcoming job when you have not made the necessary preparations. This again is functional anxiety, as the anxiety is communicating to you that you are not ready. In this circumstance, you would want to use problem solving to address the anxiety. Sometimes the cognitive distortions occur due to a misunderstanding regarding the risk of the situation. In this case, providing information resolves the issue. It may be helpful to teach the individual to ask for clarification or direction in a situation, to ease their anxiety (Piacentini and Langley 2004). When assessing a perceived risk of danger, it is important to clarify the actual risk of harm. Some people on the autism spectrum do not have an accurate sense of danger (Attwood 1998; Janzen 1996). This writer has observed that sometimes the assessment of risk is due to the person not knowing what to do and correctly concerned that they will injure themselves attempting something that is unfamiliar, although a person not on the autism spectrum would understand that they could not be harmed in the situation. In these situations this writer has found that teaching problem-solving skills, including asking for assistance and direction, can reduce anxiety. Knowing what to do when one is confused is an essential coping skill (Ory 1995). Teaching problem solving is discussed in Chapter 3. Anxiety can be assessed visually, using a thermometer or number line. Measuring anxiety in this manner helps the individual with autism gain an understanding that there are varying degrees of anxiety (Sofronoff and Attwood 2003). This information can be used to track progress as well. Some clients understand their progress best when these ratings are

Anxiety, OCD, and Treatment Approaches

121

graphed to show the gradual decrease in ratings of anxiety that they experience daily. When graphing changes, it may be helpful to prepare clients that progress is seldom a smooth continuation, and the graph will probably look more like a gradually diminishing mountain range. Once the client can identify the cognitive distortions, they are trained to use rational responses to address the cognitively distorted automatic thought. These rational responses are developed for future occurrences of the automatic cognitively distorted thought. This writer has found that writing the cognitive distortions and the companion rational responses not only provides a visual reminder of cognitive restructuring, but can also become a cue to use cognitive restructuring (see Figure 3.5, p.89, and Table 3.1, p.88). Often clients are asked to daily review the rational coping responses to prime their memory of how to respond to cognitively distorted thoughts, and to pay particular attention to cognitive coping thoughts that would be most useful to the upcoming situation. This seems to help them remember to use the rational responses when they notice a cognitively distorted thought. Daily reading of the rational responses as a primer for your mind can be framed as giving yourself a thought inoculation to prime your thoughts against the cognitive distortions (Manassis et al. 2004).

Make it visual and concrete Similar techniques used to cognitively restructure depression can also be used for anxiety. Distortions can be written down, and then destroyed, stepped on, buried, erased, or scratched out (Attwood 1999; Ory 2002a; Sofronoff et al. 2005). Concrete actions may be helpful in reducing anxiety. Case study: Blow your worries away Blowing worries into a balloon and then releasing the air, thereby blowing the troubles away, has been effective with several clients. Kevin, a highly anxious child on the autism spectrum, found that he could reduce his anxiety by blowing his worries into a balloon. Blowing into the balloon helped him slow his breathing, as he was not able to slow his breathing on his own, and tended to hyperventilate while attempting breathing exercises. One day, while

122

Counselling People on the Autism Spectrum

blowing his worries and fears into his balloon, the balloon broke. Kevin’s mother froze, expecting an explosive outburst. Kevin looked around and then smiled. He came to the conclusion that there were no more worries, since there was no more balloon! On a different day, Kevin’s balloon got away from him, and he laughed as the balloon flew about the room, spraying his worries all over the place. Kevin discovered that he could not feel afraid and laugh at the same time. Sofronoff and Attwood (2003) developed a cognitive behavioural program for children on the autism spectrum that used the analogy of a toolbox full of tools to work with anxiety. Tools were taught, such as cognitive restructuring, and emotion diaries for happiness and anxiety. Other tools included physical tools, such as physical activity to release pent-up energy, and relaxation tools, such as deep breathing. Homework included making a personal toolbox with personal coping tools.

Desensitization Desensitization is one of the most effective ways to treat fears. Systematic desensitization has been shown to be effective with people on the autism spectrum (Jackson 1983; Koegal, Openden and Koegal 2004). This is desensitization through reciprocal inhibition. Simply put, systematic desensitization involves counterconditioning the anxiety response with a relaxation response or competing enjoyable activity. The counterconditioning stimulus must be more powerful than the fear or anxiety it is meant to inhibit. Usually a relaxation response is chosen as the counterconditioning stimulus (Cormier and Nurius 2003). As the person gains mastery over a graduated series of anxious situations, they develop self-efficacy regarding their ability to master their anxieties. When using desensitization, it is important to teach ways to self-calm or otherwise distract oneself from the feelings of anxiety. Part of this self-calming instruction can include cognitive restructuring of cognitive distortions. Instructions on teaching self-calming and relaxation skills are to be found in Chapter 7 (Cormier and Nurius 2003). When using desensitization with clients on the autism spectrum, it is best to progress more slowly to ensure success. Setbacks can occur when

Anxiety, OCD, and Treatment Approaches

123

clients are under undue stress, feeling ill, or are exhausted (Cormier and Nurius 2003; Jackson 1983; Sofronoff et al. 2005).

Exposure therapy Exposure is a key ingredient of cognitive behavioural approaches to anxiety, where the client remains in an anxiety-provoking situation despite distress. This is desensitization through extinction. Exposure is based on the idea that the client must fully experience the anxietyproducing situation for cognitive and behavioural change to occur. Exposure leads to a new learning, which competes with the old fear, taking the potency of the fear down to where it is manageable (Cormier and Nurius 2003; Rodebaugh et al. 2004). A fear and avoidance hierarchy is developed with the client, and exposure to anxiety-producing situations begins with the least severe, and progresses to the most severe, as each previous situation is mastered. Exposure sequences follow the anxiety hierarchy, from lowest to highest. The client is instructed to stay with the feared situation until a new learning occurs or habituation happens. In-session exposures use role playing and imagination/visualization, while homework involves exposure to the actual situation. Exposure therapy has been shown to be effective with people on the autism spectrum (Jackson 1983; Rodebaugh et al. 2004). Therapists should be aware that subtle avoidance, such as paying attention to internal sensations, can undermine the effectiveness of exposure therapy. This may be a common occurrence with social anxiety or social phobia, and clients should be instructed to pay attention to the situation and not distance themselves from it by focusing on internal senses or by discounting the experience as artificial. The client needs to actively engage with the situation for exposure to be effective (Rodebaugh et al. 2004). Safety behaviours are common, and often attributed to the success of coping with an anxiety-provoking experience. These behaviours tend to have negative consequences. An example of a safety behaviour is to hold your hands behind your back when speaking in public. This may address the fear of shaking in public, but it will not help your presentation as a speaker. Safety behaviours interfere with habituation as the decrease in

124

Counselling People on the Autism Spectrum

anxiety is attributed to the safety behaviour and not to learning how to cope (Rodebaugh et al. 2004).

The process of desensitization and exposure therapy Whether you choose systematic desensitization or exposure therapy, the rationale of the treatment must be explained to the client. Part of the rationale is the explanation that mistaken fears and anxieties can be learned, and, as such, can be unlearned, and helpful ways to cope can also be learned. For some clients, knowing that they can learn not to be afraid is encouraging. When explaining how fear can be unlearned, this writer has used the example of very young children, and how they are afraid of some things until they get older and learn that these things are okay. Explain that learning to be calm and confident is like learning any other skill, such as learning to write, in that it takes a while to master and requires a lot of practice and homework (Cormier and Nurius 2003). Creating an anxiety or fear hierarchy can be challenging for someone on the autism spectrum who may have trouble ranking their emotions. The use of a personal construct assessment of fear or anxiety can facilitate the ranking of emotion (Hare et al. 2000). Clients often benefit from a list of their personal symptoms when they are beginning to feel anxious or fearful. It is helpful to use a number line to visually map anxiety, listing the various symptoms at the corresponding places on the number line. This helps the client identify when they are beginning to become anxious, and when their anxiety is increasing, as they may be unaware of the graduations or their symptoms of anxiety (Attwood 1998, 2003; Jacobsen 2003; Meyer 1999; Sofronoff and Attwood 2003). A discussion should occur around the varying degrees of anxiety and fear, and how these can be measured using a number line system, gauge, or fear thermometer. When creating a symptom hierarchy, it may be helpful to use a number line and some PostIt notes. The symptoms are written on the PostIt notes, and the client places the notes on the number line. In this manner notes can be rearranged as needed, until the client is satisfied regarding the creation of an anxiety or fear symptom hierarchy (Hare et al. 2000). At this point the number line is written more permanently, as it will be used as a tool throughout therapy.

Anxiety, OCD, and Treatment Approaches

125

Part of this discussion is to teach a client how to identify if a fear or anxiety is a warning signal that they may be in danger (Attwood 2003). This writer has used a risk assessment checklist with some clients to determine if a situation is really dangerous (see Table 5.1). Having a checklist to refer to has brought a measure of calm to several clients who used the list as a way to slow down their anxious thought processes. Always the last thing on the list is the direction to ask for someone else’s opinion if the person cannot determine the risk. Many of the items on the hierarchy will be unrelated and placed into their own hierarchy. Others can be grouped together. For some, the situation is midway on the anxiety or fear scale, and smaller steps must be identified (Cormier and Nurius 2003). Case study: Anxious phone caller Edward, a young man with ASD, became very anxious when he was calling his friend on the phone, even when he had a script of things he could say. Imagining the experience of holding the phone, prior to making a call, was halfway along his fear thermometer. For Edward, the mildest anxiety was discovered to be thinking about a telephone. This became the first step in his hierarchy. Table 5.1 Safety assessment questions Anxiety is a warning signal that something may be unsafe. When you feel anxious, you may need to find out if something is not as safe as you would like. Ask these questions when you feel anxious:

If yes, then it is not safe and you need to make yourself safe

If no, then it is probably safe and you will be okay

Will it physically hurt you or someone else? Will it break or damage something important? Are the people around you also afraid? Is someone saying to be careful or to watch out? IF YOU ARE NOT SURE – ASK SOMEONE ELSE’S OPINION OF THE SITUATION.

126

Counselling People on the Autism Spectrum

Actually looking at the telephone and touching it were the next two steps. As you can see, the hierarchy gradually built towards picking up the phone and calling his friend. In this situation, the young man had all the skills needed to call his friend. He knew what to say, how to dial the number, what to do if he got a wrong number, and how to leave a message. His anxiety, however, prevented him from doing these things. Sometimes the items of the hierarchy indicate a deeper issue, such as fear of criticism and not social phobia. Asking the client what would change if they no longer had the fear may provide some clues as to any underlying issues (Cormier and Nurius 2003). Do not be surprised, however, if the client cannot contemplate their future in that manner, as people on the autism spectrum are often unable to think about their future, particularly those who are moderately or severely affected. Thinking about the future is too abstract a concept for many people on the autism spectrum. Clients need to learn how to self-monitor. A fear log is a tool to chart anxiety between sessions, and to show progress (Moynahan 2003; Sofronoff and Attwood 2003). A cheat sheet of relaxation or distraction strategies at the front of the log may be a helpful reminder for clients. They need to feel comfortable admitting and identifying their fear before the fear log can be accurate. Included in the log is what the client did in the situation, as well as ratings of the fear or anxiety. Part of the log can include a list of things that worked well and things that did not work very well (Kellner and Tutin 1995). This provides the client with a list of their successes and a list of things to avoid doing. Clients may have trouble coming up with their own solutions, as people on the autism spectrum have difficulty generating solutions, and often do not recognize when a solution is inappropriate or impractical.

Thought stopping Thought stopping is the practice of becoming aware of your thoughts and intentionally distracting yourself away from them. The use of concrete cues for thought stopping have been shown to be helpful for people on the autism spectrum. Thought stopping is the basis of mindfulness practices, where you consciously switch your focus from a thought

Anxiety, OCD, and Treatment Approaches

127

or emotion to some more calming or neutral thing, becoming more of an observer of your body than a participant in what is going on. A modified form of mindfulness meditation has been used successfully with a person on the autism spectrum (Cormier and Nurius 2003; Singh et al. 2003). Thought stopping can be facilitated through the use of cue cards. This writer has routinely handed out cards that read stop, breathe, and think. Some of the cards also have a suggestion to go ask for help. The cards may have pictures of things that each client finds helpful and calming, or colours that the client finds soothing. The people to whom I have given the cards have expressed that they serve as a helpful reminder of what to do when they feel flustered or confused. Case study: Card of tranquil power Cliff was a young adolescent with PDD-NOS. Cliff had serious anxiety issues, and would often bolt from the room to hide when feeling very anxious. His flight from the situation was blind, and he was unable to assess the danger his headlong rush presented in community settings. Cliff enjoyed playing a card game at school that involved different characters who had magical powers. With this interest in mind, the writer created a player enhancement magic card of calming power, with instructions for use on the back. The instructions were to stop, breathe deeply three times, and to think. Cliff found the card very helpful, and he asked for several copies to give to his friends. His friends found them helpful too.

Using Social Stories™ to treat anxiety Social Stories™ are teaching tools that are effective with people on the autism spectrum. This writer is not aware of any studies using Social Stories™ to treat anxieties and fears. However, they have been used to treat anxieties and specific phobias in this writer’s professional practice. In some cases the Social Story™ provided a visual desensitization process, and in other cases simply explained the fear so that it was no longer irrational (Attwood 1998; Gray 1994a, 1994b, 1995). This writer has found two key components that make this use of Social Stories™ successful in her practice. The first component is that the people surrounding the individual with ASD who has the irrational fear

128

Counselling People on the Autism Spectrum

must not respond to the fear trigger as if it is special. They need to ignore the fear trigger. Often people around someone with a phobic-like fear will become hypervigilant to protect the person from the fear trigger. This sends an underlying message that there really is something dangerous about the fear trigger. Ignoring the fear trigger communicates that there is nothing to be afraid of. “The genesis of a child’s dog phobia could reside in a direct traumatic experience…while the phobia is maintained by excessive attention from the parents” (Jackson 1983, p.194). The second key component involves the use of digital image editing, or creative cut and paste. This part of the intervention uses the strength that individuals on the autism spectrum have of being visual thinkers (Attwood 1998, 2003; Frith and Happé 1999; Grandin 1996). Within a Social Story™ this writer placed digital photographs of the person and the feared object or feared situation. As the story progresses, the feared object is moved closer to the person’s image in the photo. All pictures are of the person happy and calm. Case study: Show me how to be brave An example of this is a story to treat Zachary, a nonverbal child with autism, who had a phobic-like reaction to squirrels. This writer framed the story as a walk in the park. In each photograph there was a photo of a squirrel, as well as a photo of Zachary in the park, waving and smiling. In the first photo the squirrel was far off in the distance, barely a dot. As the story progressed, the squirrel moved closer to Zachary, and became bigger in the picture. The final photo showed the squirrel on top of a slide as Zachary stood happily in front of it. The squirrel was just above Zachary’s head. In this situation the story would not show Zachary touching the squirrel, as that is not a safe behaviour. At the very end of the book were two coupons that Zachary could cut out and cash in for a treat when he had read the story every day for a week, and every day for a month. Zachary spent the winter reading the story every day. By spring Zachary was no longer reacting with fear to squirrels. A similar variation that this writer found to be successful was a story about dogs, where Zachary not only learned about dog behaviour but also became desensitized to dogs through the reading of the

Anxiety, OCD, and Treatment Approaches

129

book. It is noteworthy that the dog book included the directions on how to approach and pet a dog only if the owner is nearby to hold it and gives permission to pet the dog. These safety measures must be explicitly taught, as people on the autism spectrum, like Zachary, would not spontaneously understand that the dog owner’s permission must be gained before touching the dog. Case study: The cutting edge A second example of this strategy is a young lady, Lisa, who was terrified of knives, including table knives. From Lisa’s description it appeared that she thought a knife could somehow animate itself and cut her if she came within sight of it. Lisa’s story described knives as inanimate objects that were tools, like pens, computer mice, sewing machines, and scissors. The first part of Lisa’s Social Story™ involved photographs of people using knives for ordinary purposes. All the photos were of people she knew, and they were smiling and calm-looking while they were using knives for ordinary tasks. The second half of Lisa’s story involved photos of her completing the same tasks with a knife, looking happy and smiling. In this case she was photographed holding a popsicle stick and the knife was digitally added in afterwards, as, at the point of creating the story, Lisa would not enter a room where a knife was visible. Once Lisa could see herself in the book using a knife safely, she was able to tolerate knives, and could be taught how to use a knife safely. Lisa only needed to read her story once. With most other individuals, this process tends to gradually occur over time as the story is reread many times.

Other approaches for autistic anxiety Sometimes anxiety is due to the way in which a person who is on the autism spectrum experiences the world, and may be approached in a different manner. Some of the more common concerns are lack of structure or predictability, lack of understanding, and perfectionistic anxiety (Ory 1995, 2002a).

130

Counselling People on the Autism Spectrum

Use of structure to reduce anxiety Lack of structure and unpredictability can cause anxiety for individuals on the autism spectrum (Aston 2003; Attwood 1998; Hurlbutt and Chalmers 2004; Sofronoff et al. 2005). People with autism find that ambiguous or unclear situations make them anxious and contribute to their acting out. One obvious way to prevent acting out is by using visual cues and sequences so that people are able to predict more accurately what is going to happen next (Lovett 1997, p.118). The use of structure, scripts and task lists, and visual schedules can alleviate anxiety from not knowing what to do next. Use scripting and structured social interactions to help reduce anxiety. These organizational tools help make life predictable, and therefore less confusing and scary. For many people on the autism spectrum, chaotic time organization and confusion are primary causes of anxiety (Sofronoff and Attwood 2003). Lovett commented: “Sequencing may be an adaptive way of organizing information for people with autism given their perceptual challenges” (1997, p.118). Case study: What’s next? Bruce, a nonverbal man who had autism, would become very agitated if no one else was in the room with him. If someone was in the room, he would ask for assistance several times within five minutes, even when the activity was one he enjoyed and had completed previously. It appeared that Bruce could not structure or organize his actions. A choice board was created with photos of every possible activity that Bruce could engage in in that particular setting during his free time. Bruce would be given the board when it was break time at his day program. He was able to choose an activity independently by using this board. Each activity contained a photo album showing how to complete each activity, step by step, using photographs. With these guides, Bruce no longer requested help. This worked so well that an activity board was made in a similar fashion, visually scripting Bruce’s jobs. Bruce began proudly showing the completed activity or job to his support people when the task was completed.

Anxiety, OCD, and Treatment Approaches

131

For many people on the autism spectrum, not knowing what to do can create anxiety. They prefer to have some concrete rules to follow, a prop that acts as a cue or reminder of what they are supposed to be doing, and a role that fits into the situation. The use of rules and rituals can make the abstract concrete, assisting the person with ASD in coping with the abstract, and reducing anxiety (Ory 1995, 2002a). An example would be to hand someone on the autism spectrum a dishtowel when they entered the kitchen. The dishtowel becomes the prop, or cue that they should dry dishes. The role of drying dishes has a definite set of rules and routines that assists in completing the task correctly, and anxiety is reduced as the script is familiar and routine. Case study: Rule, prop, and role Rusty, an adult with ASD, loved music, and expressed a desire to go to a local dance for people who had special needs. However, he would panic when he got to the dance and insist that he had to go home, but was too panicked to take the bus, and would harass anyone he knew for a ride home. The writer was called to help when Rusty became aggressive towards a stranger in an attempt to bully a ride home from this person. Rusty would panic when he did not know what to do during the dance. When given the task of helping the disc jockey find the next song to play, Rusty remained calm and could participate throughout the entire dance. He was unable to accept an invitation to get up to dance, however, but enjoyed swaying to the music next to the disc jockey. Rusty had his role, knew what the rules to his role were, and had the CDs as his props.

Anxious questions Often people with autism spectrum disorders ask questions that may be interpreted by the receiver as a profound question deserving an abstract answer, but this may not be the case if the answer is above the person’s developmental level. An abstract answer may create confusion and anxiety if the person with ASD cannot make sense of the abstract. Often it is best to start with concrete answers and move to the abstract only if the person on the spectrum pursues the matter. Double meanings and

132

Counselling People on the Autism Spectrum

ambiguity create anxiety for people on the spectrum (Ory 1995). It is helpful to draw out the answer in a picture or as a cartoon to facilitate understanding (Attwood 1998).

Perfectionistic anxiety Many people with autism spectrum disorders will not attempt to do anything unless they do it perfectly the first time. They may not attempt an activity until they know all the rules and feel that they can complete all the necessary steps correctly. Perfectionism may interfere with the ability to produce work, as continual correction may mean that the work is perfect but took many more hours to complete than the teacher or employer may be ready to accept. Sometimes accommodations can be made, like using a computer to produce written work, or the steps to the task can be modelled prior to asking the person with ASD to attempt the task. Preteaching tasks can help prepare people with ASD to attempt new things. Using scripts and checklists can also facilitate trying a novel activity or task. For many, helping someone else with the tasks is a low anxiety way to facilitate their trying something new. There is no pressure for them to do it correctly, as they are only the helpers (Ory 1995, 2002b). Case study: The perfectionist Jeremy, a young adult with Asperger’s, suffered from perfectionistic anxiety. Jeremy did not demonstrate he could read until he was ten, at which time he picked up an advanced children’s novel series and read the entire set over a weekend. The amount of reading that Jeremy completed would have been impossible for most adults. Jeremy would strongly refuse to try anything until he was completely confident that he would do it right the first time. This writer used a reframe of practice runs to introduce to Jeremy that there are times when you do something just to practise, and that they don’t count. Since they don’t count, you don’t have to do them perfectly. Jeremy was able to try new things by calling them practice runs. The writer recommended that Jeremy get a few practice runs at something before his peers or classmates were going to be taught the same thing. This preteaching gave Jeremy

Anxiety, OCD, and Treatment Approaches

133

some idea of what to expect, allowing him to feel less anxious when new things were presented. Another strategy that worked for Jeremy was helping this author to figure out how to teach a task to someone else. This took the pressure off Jeremy to perform the task correctly, particularly when he was instructed to try to find where someone like himself would make a mistake. Once Jeremy went through the task and worked out all the difficulties, he was able to do it successfully.

OCD AND PERSEVERATIVE BEHAVIOUR About 13 per cent or one in eight people with autism spectrum disorder also have a diagnosis of obsessive compulsive disorder (OCD). While most OCD symptoms are around checking, counting, or cleaning behaviours, OCD with people on the autism spectrum tends towards repetitive telling or questioning, touching, or ordering. Obsessive thoughts are less likely to be about aggression, religion, or have sexual overtones, unlike people not on the autism spectrum with obsessive compulsive disorders (Reaven and Hepburn 2003). There is some speculation that repetitive and ritualistic behaviours serve a self-calming function in people who are on the autism spectrum (Sofronoff et al. 2005). Cognitive behavioural interventions have been shown to be effective in treating OCD symptoms, and applications for people who are on the autism spectrum are “rare, but promising” (Reaven and Hepburn 2003, p.147). This is good news considering that pharmaceutical approaches for OCD improve symptoms from about 20 to 40 per cent, and this is with about 40 to 60 per cent of the general population who has OCD. In other words, maybe half of the symptoms of OCD can be treated in slightly over half of the general population. Effectiveness for people on the autism spectrum may not be as high, as many people do not respond to medication as anticipated. Often the antidepressant clomipramine (Anafril) is used, as are selective serotonin reuptake inhibitors (SSRIs) such as fluoxetine, fluvoxamine, and sertraline. Unfortunately, relapse rates are about 90 per cent when medication is discontinued. Relapse is less common and less severe when using CBT approaches (Reaven and Hepburn 2003; Wilhelm, Tolin and Steketee 2004).

134

Counselling People on the Autism Spectrum

Cognitive behavioural treatment that includes exposure plus response prevention has been shown to be the most effective for mild to moderate OCD. Often medications are used as an adjunct treatment. Treatment progresses from exposure to mildly anxiety provoking or fearful situations to those that are more intense once the situation is mastered. Most treatment gains are from exposure in the natural environment, often between sessions. For people on the autism spectrum, where transference of skills is an issue, using response prevention strategies in real-life situations is pivotal (Piacentini and Langley 2004).

Distinguishing between OCD symptoms and autistic perseverations When treating OCD in people who are on the autism spectrum, a distinction needs to be made regarding repetitive behaviours and perseverative interests. Repetitive behaviours that serve as a self-calming strategy are not obsessions per se, as they serve a coping function, even if they are not considered appropriate in a given situation. These self-calming strategies can be given a private place and time in which to engage in, or alternative strategies that are more socially appropriate can be taught. If these behaviours interfere with daily functioning, they may be targeted in OCD treatment. If the behaviours are not interfering with everyday living and serve as stress reducers or coping strategies, they are often considered functional for the individual and left untreated. Some perseverative behaviours are engaged in for pleasure, and these are not the target of OCD treatment. These behaviours are more like hobbies or special interests, and often do not detract from daily functioning (Reaven and Hepburn 2003).

TREATMENT OF OCD Throughout the treatment of OCD, lists and session notes are helpful to make the process more visual for the person with ASD. Pictures and illustrations can be used with people who have difficulty with written language. Using pictures may be of benefit to many clients, and OCD treatment can be written up in a social story format for use in between sessions (Attwood 1998; Gray 1994a, 1994b, 1995). For some, drawing

Anxiety, OCD, and Treatment Approaches

135

their OCD and what they would be like without it may help them see the benefits of treatment (Reaven and Hepburn 2003). Treatment of OCD with people on the autism spectrum begins with psychoeducation regarding what obsessive compulsive disorder is, and distinguishing OCD from repetitive behaviours and perseverative topics of interest that are normally found within autism spectrum disorders. A list or chart can be created to visually illustrate what OCD is and what it is not, and to dispel myths regarding OCD. The client should be asked to supply their personal symptoms of anxiety, as behavioural symptoms may be different from the symptoms we often associate with anxiety. Differences should be discussed between perseverative interests and favourite subjects, in that perseverative subjects and special interests bring enjoyment, much as hobbies do, and therefore are not symptoms of OCD. A list of OCD symptoms should be created, with estimates of how much time is spent on OCD behaviours. This can later be used as an assessment measure (Reaven and Hepburn 2003).

Define the OCD hierarchy OCD symptoms are ranked into a treatment hierarchy, from easiest to manage to the most difficult. When discussing situations, it is useful to point out to the client that there are several situations where they were able to manage their OCD successfully. Symptoms are assessed using a worry or fear scale, as different behaviours tend to go with different levels of fear, anxiety, or worry. This scale is made visual in the form of a linear scale or an emotional thermometer (see Figures 3.2 and 3.3, pp.90, 100). Increments of the scale should be in the client’s own language (Piacentini and Langley 2004; Reaven and Hepburn 2003). OCD behaviours can be constructed on a linear scale using PostIt notes, with OCD symptoms or OCD trigger situations written on the notes. The notes are then arranged on the linear scale to show severity. Distance between PostIt notes can provide clues as to the changes in severity of the OCD symptoms or trigger situations (Hare et al. 2000).

136

Counselling People on the Autism Spectrum

Exposure and response prevention Exposure to the feared or worrisome situations without engaging in the OCD behaviours reduces the OCD over time. Avoidance of trigger situations is discouraged, as situations are tackled from the least fearful to the most, onwards up the hierarchy. It is helpful to explore the situations where the client overcame the urge to engage in OCD behaviours to determine what they know to do to stop their OCD from taking over. Clients will usually have some effective strategies to start from. Identifying already effective strategies demonstrates to the client that they are capable of getting control over their OCD, as they have identified situations where they were successful (Cormier and Nurius 2003; Reaven and Hepburn 2003). Several different alternatives to the OCD behaviour must be taught prior to the beginning of exposure and response prevention. Relaxation strategies, distraction, and cognitive restructuring of anxiety-producing thoughts are the tools for treating OCD. Reality testing of the cognitive distortions regarding the consequences of refraining from engaging in the OCD is essential. Reaven and Hepburn (2003) made the coping tools tangible and visual for their ASD client by having their client create drawings of tools with their cognitive behavioural names and placing them in a cardboard toolbox. These tools were kept throughout the day as reminders of the tools available to their client when she needed them. Drawing tools may not be appropriate with adult clients or with higher functioning clients, although the analogy may be helpful (Piacentini and Langley 2004; Reaven and Hepburn 2003). The use of Social Stories™ can highlight trigger situations, and include helpful coping strategies. Illustrating situations can facilitate understanding and provide opportunities to highlight salient social cues (Attwood 1998). Social Stories™ can be created specifically to address common recurring anxiety-producing situations. It is important to discuss with clients that there will be setbacks and times when progress goes more slowly, particularly when the client is feeling overly tired or ill. It is important to do some contingency planning around relapse and getting back on track. Often planning for a relapse lessens the chance that the client will give up altogether (Piacentini and Langley 2004; Sarafino 2002).

CHAPTER 6

Relationships and Social Skills Interacting with other people is one of the primary areas of difficulty for people who are on the autism spectrum (Attwood 1998, 2003; Filipek et al. 1999; Rutter 2005). Some people on the autism spectrum do form friendships and intimate partnerships (Aston 2003). Social skills are some of the most important abilities for both academic and employment success (Elliott and Gresham 1991). Quality of life in adults on the autism spectrum is negatively impacted by poor social skills (Gustein and Whitney 2002). Poor social skills do not appear to be from lack of social exposure but lack of social understanding, although this author has noted that poor social understanding can lead to social withdrawal: Society tends to judge one’s disability on outward appearances. Individuals with AS look perfectly typical, their odd use of language and atypical social behaviours are rarely understood by those around them. Children with this disorder are often seen as “behaviour problems,” “inappropriate,” or “cold,” which are inaccurate descriptions of children who often struggle to fit in. (Church, Alisanski and Amanulla 2000, p.19)

Adults are often judged by the same yardstick as children with ASD, with perhaps the exception that their behaviour is perceived as more volitional (Aston 2003). Their atypical behaviour and difficulties following the social norms and practices result in varying degrees of social anxiety. High functioning people with ASD may be aware of social rules as they try to conform to them to fit in with the rest of the social world. However, trying to conform may not be completely successful. Trying to make

137

138

Counselling People on the Autism Spectrum

sense of the social world has been described by some people with ASD as “perpetual culture shock” (Jones and Meldal 2001, p.40). Social situations can be overstimulating. The ability to inhibit behaviour is negatively impacted by hyperarousal (Raymaekers et al. 2004). This may be why some people with ASD go out of control in social situations. Social codes of conduct are often invisible to someone on the autism spectrum. Not understanding the social codes of conduct can be anxiety producing (Attwood 1998). Social anxiety tends to be high among individuals with ASD. An analogy would be the experience of being dropped in a foreign land without understanding the language, knowing the social codes and mores, and having no tour guide or guidebook to assist you. Imagine that the culture is so different that everything that you know is wrong about this culture. Imagine that you could be arrested and sent to prison for doing the wrong thing. This could be similar to the experience of living on the autism spectrum. If you were aware of the idea that engaging in some behaviour can result in a jail term, you would be very anxious that you did not engage in those things, even though you did not know what they were exactly. If you were oblivious to the fact that some of your behaviours could put you in jail, you would do whatever you thought was right, and then become outraged and confused when the police arrested you. Again, this may be similar to the experience of someone on the autism spectrum who was not very aware of the social codes, or that their behaviour impacted other people. Also, they may not be aware that others may have a different perspective or different information than they have, resulting in difficulty understanding the other person’s reaction towards their behaviour. The National Autistic Society of Great Britain conducted a study that showed that 37 per cent of adults on the autism spectrum reported that they engaged in no social activities and half reported going out only once or twice a month (Gustein and Whitney 2002). In the Orsmond et al. (2004) study, only about 8 per cent of their participants reported having reciprocal friendships outside of “prearranged settings” (p.253), with half reporting no peer relationships outside of school and work. Social impairments can have a major negative impact on the ability to live inde-

Relationships and Social Skills

139

pendently in the community, even among very intelligent people with ASD (Green, Gilchrist, Burton and Cox 2000). Loneliness may be understood by people on the spectrum in a cognitive sense, such as being alone, but not in the emotional sense, such as the emptiness you can feel inside when you are lonely. Children with ASD were more likely to describe friendship without emotional qualities and more in terms of doing things together and close proximity than the affective qualities of friendship. Often there are conceptualization difficulties of friendship and relationships (Attwood 2003).

EMPLOYMENT AND EMPLOYMENT ISSUES Employment is an important part of many people’s lives, including those on the autism spectrum. Having employment is a source of pride and accomplishment in our society, and there is a significant relationship between job satisfaction and self-esteem (Nesbitt 2000). A British report indicated that less than 6 per cent of high functioning ASD adults work full time, with only about 2 per cent of lower functioning adults having full-time employment (Beaumont 2001). People on the autism spectrum who had supported employment placements had better outcomes than those in sheltered workshops, especially those workshops that group together many people on the autism spectrum (García-Villamisar, Ross and Wehman 2000). People with Asperger’s or high functioning autism have many qualities to offer employers. They are punctual, detail oriented, love routine and repetitive work, and are loyal to the employer. However, overshadowing difficulties may hide these qualities. These difficulties may bring the individual with ASD to the attention of professionals. People on the autism spectrum may present to counsellors with employment issues, which may involve social skills, problem solving, employment seeking, on-the-job bullying, and specific issues related to the job (Hurlbutt and Chalmers 2004).

Disclosing disability to employers Although Gerber, Price, Mulligan and Shessel (2004) did not differentiate persons on the autism spectrum from those who had other learning

140

Counselling People on the Autism Spectrum

disabilities, it is this writer’s opinion that their information is still valuable to include here. There were many people with learning disabilities (including autism spectrum disorders) who did not discuss their disability with employers, and some who had negative experiences discussing disabilities with past employers. One man described his disability in positive terms, such as being a very visual thinker, and how this was an asset to the position. All of the American and most of the Canadian respondents feared that asking for accommodations would have negative repercussions on their jobs. Many expressed feeling inadequate as compared to coworkers, and feared negative reactions from coworkers. Almost one-fifth had experienced negative reactions from coworkers regarding their disability. An equal number of Canadians had coworkers who were supportive and helpful, although fewer of the Americans could make that claim (Gerber et al. 2004). For most people, the decision to disclose should remain a personal decision, and may be best after the person has been hired (Hurlbutt and Chalmers 2004). This writer would suggest that the disclosure occur after the probationary period, if the person on the spectrum does not need adaptations or job supports, simply because it is often harder to fire someone after they have passed their probation. Younger workers with ASD may be more likely to disclose their disability. Recent support in the education system has taught young employees with ASD how to maximize their strengths and how to ask for adaptations. They have often had the support of career planning and more access to governmental supports than their predecessors. Earlier support and career planning assistance has resulted in higher self-esteem among those people with ASD that have entered the workforce more recently. As long as educational and governmental supports continue or improve, this trend is likely to continue (Müller, Schuler, Burton and Yates 2003). Counsellors must attempt to assess the potential ramifications of disclosure or nondisclosure with the client (Gerber et al. 2004). Autism spectrum disorders in high functioning people are often mostly invisible. Many people think of Kanner’s type autism or lower functioning, nonverbal individuals when they hear of autism and may not believe that a high functioning person is on the spectrum (Aston 2003). This writer’s

Relationships and Social Skills

141

professional experience is that people on the autism spectrum who are extremely intelligent and high functioning are often disbelieved when they indicate that they have a pervasive developmental disorder, and often perceived as wilful or socially abrasive. Many workplaces continue to be disability unfriendly, and this must factor into the decision to disclose. Considerations should include what is the purpose of disclosure as well as the best way to disclose. These are all issues that may be brought into counselling.

Job advancement and job loss Job advancement was often slow and difficult to attain. Job loss was more common than job advancement. Often the reason for being fired was poorly understood. One participant in Hurlbutt and Chalmers’ (2004) study commented that it was confusing not to understand the reasons he was fired from many jobs. Reasons that typical individuals would understand, such as bothering coworkers of the opposite sex, meant nothing to this man. He required very specific guidance regarding what he was doing wrong. Often the normal characteristics of people who are ASD make it difficult to keep employment, as social skills and getting along with coworkers are considered important work qualities. Finding new jobs became increasingly difficult with each job loss, particularly when periods of unemployment had to be explained to prospective employers (Gerber et al. 2004; Hurlbutt and Chalmers 2004; Müller et al. 2003). Case study: Faux pas failures Jessie was a young adult with ASD who had successfully completed college in a trade that was in demand. Initially Jessie was able to attain work, but soon lost the job due to muttering unusual and strange comments under his breath. Jessie could not understand the reasons he was fired, as he was not conscious of his mutterings. Jessie was fired from several jobs due to his inappropriate mutterings. Over the course of five years, Jessie’s spotty work history became a significant barrier to finding new work. Jessie’s other odd behaviours, combined with his muttering, frightened his coworkers and employers, as they did not understand that these social faux pas were part of Jessie’s disability.

142

Counselling People on the Autism Spectrum

With some employment support, where this writer discussed Jessie’s social difficulties with an employer, Jessie was able to gain employment as a general labourer in the construction industry. He was unable to gain employment in his own trade.

Underemployment and overqualification Many people on the autism spectrum cannot find jobs in the areas that they are trained in, particularly those trained for professional careers. Frequently they are underemployed and overeducated for the job. Often jobs are poorly matched to the persons with ASD and vocational services are nonexistent. Usually higher functioning people with ASD do not meet the criteria for government support services, and do not get the support they may require (Müller et al. 2003; Nesbitt 2000). Some people with high functioning autism and Asperger’s felt betrayed by the education system which encouraged them to go to university but did not offer support in choosing degrees that would lead to employment (Boslaugh 1999). With underemployment common, people on the autism spectrum are done a disservice if the professionals around them counsel them to enter training programs that do not facilitate employment.

Functional employment challenges Basic employment skills, such as interviewing skills, organizational skills, and resumé creation skills, are often lacking. People with ASD need to be specifically taught how to handle feedback and incorporate it to improve performance. Adapting to new job routines can be a challenge. Having a job mentor is often helpful (Grandin 1996; Hurlbutt and Chalmers 2004; Müller et al. 2003). Procedures need to be written in great detail, as should job responsibilities and expectations, to help people on the spectrum to understand what they are supposed to be doing on the job. The ASD person needs to be able to accept that others may not always follow the rules, and that they are not expected to police others on rule following, as this impedes relationships with coworkers. Expectations around productivity and job conduct need to be spelled out, as well as employment rules. Sometimes

Relationships and Social Skills

143

these rules need to be spelled out very specifically. One crucial piece of information for an individual on the autism spectrum was knowing whom to go to when help was needed. People with ASD benefit from extensive on-the-job training. Extensive training facilitates generalization of job skills to the job setting (Hurlbutt and Chalmers 2004).

Employment and social skill difficulties Many ASD persons themselves found the social aspects of employment to be the most difficult, and reported often having difficulty getting along with their coworkers and employers (Boslaugh 1999). People on the autism spectrum often refer to people not on the autism spectrum as neurotypical (NT). Many people with ASD attempted to act like neurotypicals to fit in, although this is rarely successful (Jones and Meldal 2001; Willey 1999). Trying to fit in tends to be emotionally and physically draining as well, and working can be anxiety producing and very stressful. It is often left up to the individual with ASD to change so they could cope with the employment situation, as employers are not often the ones doing the accommodating (Nesbitt 2000). One participant in Hurlbutt and Chalmers’ (2004) study expresses the issue eloquently: It seems to me that most NTs have a way of interacting…with the world handed to them on a plate. They don’t have to make it up from scratch; they don’t have to find meaning, beauty, or emotional expression. These things are provided and taken care of, so they are a lot more free to work at any job. (Hurlbutt and Chalmers 2004, p.219)

For many people on the autism spectrum, the social challenges of employment are far more difficult than the actual job expectations. Social issues are often the primary cause of employment termination (Boslaugh 1999; Gustein and Whitney 2002; Hurlbutt and Chalmers 2004).

MARRIAGE AND INTIMATE RELATIONSHIPS In the past it was believed that people on the autism spectrum did not form intimate relationships. Some do not, and the reason is seldom that

144

Counselling People on the Autism Spectrum

there is no interest in forming relations (Jones and Meldal 2001). Usually they lack the social skills to form or maintain intimate relationships. Currently it is understood that higher functioning people with ASD can and will marry, have relationships, have children, and appear quite normal to outsiders. As males are more often affected by autism spectrum disorders, most of the research on marriage, family, and relationships is from the perspective of the male having an autism spectrum disorder (Aston 2003; Attwood 1998). Men with autism spectrum disorders tend to choose partners who are older with nurturing qualities. Women are attracted to these men for their kindness, gentleness, and flattering attention. Frequently the men have high status careers, such as in engineering or computers. Usually the person with autism spectrum disorder has not sought counselling on his own initiative and is often sent in by his spouse. Therefore ownership of the problem and of seeking help are not often there (Aston 2003; Meyer 1999). Aston (2003) notes that the male who comes into counselling will appear intelligent, hardworking, and faithful, yet cannot complete any task requiring foresight or intuition, and he will complain that he doesn’t understand why his partner is never happy. Often the partner of the person with an autism spectrum disorder will be doing most of the changing in the relationship to make it work. For many of the wives and partners, having a relationship with a man on the autism spectrum makes little sense, and they may question their sanity. Yet often they continue to stay as their nurturing side worries about how the ASD partner will cope without them. There is a profound difference between having ASD and choosing to act in a certain way. A man who is not on the spectrum can choose to engage in social small talk and express emotions to his partner. Someone with ASD cannot choose what he can and cannot put into a relationship as there are significant deficits in emotional and social functioning that the ASD person has to cope with. Some of the main concerns that bring couples with an ASD partner into counselling are the lack of empathy, difficulty socializing, problems with sexual intimacy, and apparent selfishness. Often the person with ASD may want to be able to provide the social small talk and emotional support, but is unable to do so because of

Relationships and Social Skills

145

their deficits. Indeed, for some, social small talk and emotionality are so foreign that they cannot comprehend them, let alone attempt to engage in these kinds of behaviour (Aston 2003; Attwood 1998).

Domestic violence and ASD AS men (and women) may become violent when they feel out of control of a situation with their partners. Forty per cent of the AS men studied by Aston (2003) said that they had been physically abusive to their partner at some time in the relationship, with 10 per cent of the attacks described as being unprovoked. About 70 per cent of the men responded affirmatively when asked if they had ever been verbally abusive to their partners. Thirty per cent of the AS men indicated that their female partner was abusive towards them. Men who are in denial of their diagnosis tend towards being more violent, placing blame on their partners. Often ASD men react to comments as if they were criticism directed towards them. The men on the spectrum may not be able to tell when someone is offering a suggestion or being very critical. This can lead to frequent disagreement and arguing, which can spiral out of control (Aston 2003). Violent incidents may appear unpredictable to the partner. This may be due to the characteristic of poor emotional regulation (Laurent and Rubin 2004) and that of disinhibition when overstimulated, anxious, or overaroused (Raymaekers et al. 2004). Anger or total shutdown may be a coping strategy for situations where the ASD person feels the situation is out of control (Aston 2003).

Changes in initial courtship behaviour: losing that loving feeling A common relationship issue occurs when the ASD partner stops the courtship behaviour. Their partner will often begin to feel resentful that they continue to do nice things for the person with ASD, but he does not reciprocate. Although this is a common issue in couples counselling, it is usually more extreme in couples where one partner has ASD. By the time the issue is brought to counselling, the ASD male (as it is usually the male who has ASD in the relationship) will probably also feel resentful as his

146

Counselling People on the Autism Spectrum

partner will probably have stopped being nice due to her resentment that her ASD partner is not the wonderful giving man that she fell in love with. Often it is simply a case that the ASD male does not realize that the courtship behaviour, such as giving gifts and doing nice things for the woman, should not stop when the relationship is secure, but should be ongoing to a lesser degree. ASD men cannot respond to the subtle cues that their partners send. If they are not told specifically that they are appreciated and doing what their partner wants, they will get into difficulties and become confused. Specific suggestions of doing something special or nice for the partner at times may be necessary. This may seem unromantic and mechanistic, but this specificity is what the person with the autism spectrum disorder needs (Aston 2003). He just simply does not intuitively know that being nice and doing special things for your partner is something that needs to be ongoing in a relationship. He needs to know when, how much, and, specifically, what things she would consider pleasurable. After all, if he finds lightbulbs pleasurable, wouldn’t he believe that his partner would share that same enjoyment? However, this writer does not know many women who would welcome the gift of a lightbulb. Case study: Regaining that loving feeling Joan, whose partner Jack was on the autism spectrum, complained that he was no longer the romantic man she fell in love with. Jack could not comprehend what it was that Joan complained about. Jack stated that he did everything she asked of him. Joan, however, did not think she should have to tell Jack everything she wanted him to do to make her feel special. Joan felt that Jack should naturally know what things made her feel special, and what things most women would like. Joan did not understand that Jack would not infer that she would like something if another woman liked it, nor would Jack pick up on the subtle hints that Joan was feeling neglected. The compromise that this writer and the couple developed was to have Joan write down some things that she thought were romantic (her girlfriend added some of her own ideas to this list) which were placed on some recipe cards. These cards were placed in a special box (called the romance box) for Jack

Relationships and Social Skills

147

to use. Jack was given a smaller box with several copies of the days of the week printed on them. Every Monday morning Jack was to draw a card (after shuffling the deck) to determine which day of the week he would do something from the romance box. Some of the cards had “two days” written on them. His instructions on the two-day cards were to pick two romance cards and do two romantic things that week, one on each day. The instructions included not telling Joan anything about the romantic thing, so it would be a surprise. One instruction added later was to have Jack inquire about Joan’s plans for the week, to ensure that there would be no scheduling conflicts. They tried this system for two months and decided that this met both of their needs. In fact, they both said that they were enjoying being with each other again, and Jack indicated that Joan was the wonderful woman he fell in love with all over again. Joan commented that she enjoyed this so much that she asked Jack to give her some cards with romantic ideas that he would like her to do, because she felt that Jack was having all the fun.

Autistic rituals and need for sameness One of the most confusing relationship characteristics of autism is the need for sameness, particularly when the rituals do not make sense to the partner who is not on the spectrum. The rituals and demands for sameness can be debilitating to the relationship. Partners are seldom welcome to join in the rituals, and are certainly not welcome to change them. Autistic rituals can interfere with family life, as it can be difficult to work around the ASD partner’s demands that the ritual remain unchanged. The need for sameness can isolate the partner and the family as well, as socializing on a schedule does not often work. Conflict can arise when social needs clash with the rituals, and the partner who is not on the spectrum is not comfortable meeting her need for socializing without her ASD partner (Aston 2003; Attwood 1998). For most people not on the autism spectrum, variety is the spice of life, as the saying goes. For the person on the autism spectrum, variety is definitely not something that will spice up or enhance their lives. The ASD partners would much rather have routine and predictability in their

148

Counselling People on the Autism Spectrum

home lives, as these are seldom found in their working or school lives. Predictability and routines create order in an often confusing and overwhelming world, and are a sense of comfort for someone on the autism spectrum (Aston 2003; Attwood 1998).

Sexuality Men with ASD cannot easily understand social signals or social cues. This is even more the case when attempting to read their partner to determine if sexual intimacy is welcome. Misinterpreting sexual interest cues can have serious consequences when the partner is unwilling, and can lead to a lot of confusion for the ASD male. Frequently there are communication issues around intimacy. Partners who are not on the spectrum may find it stifling and contrived to instruct their partner regarding their sexual wants and desires, seeing this as unromantic. However, this level of communication may be necessary for fulfilment of sexual needs when the partner has ASD (Aston 2003). About half of the couples that Aston (2003) studied indicated that they had had no sexual relations in the past year, and that sexual intimacy was not important in their relationship. Some of the men had homosexual affairs but did not see this as wrong as they were not having sex with another woman. From their point of view they were not being unfaithful if they met their sexual needs with another man. For them there was no relationship, just a mutual enjoyment. One man on the spectrum explained to this writer that having a homosexual relationship was not cheating on his marriage as it was simply physical, much like two men playing a sport. He could not comprehend his partner’s emotions around this. He could not understand why she was upset when he practised safe sex with other men. He could only understand the concrete complications of contracting a sexually transmitted disease, but not the emotional ramifications of cheating on his partner. Some of the idiosyncratic interests found in people on the autism spectrum can occur in the area of sexuality or attraction. Some ASD men fixate on women’s body parts, and cannot understand their partner’s lack of interest or disapproval. These fixations can be perceived as stalking, with serious consequences, as the ASD male may not accurately read the signals sent by the person to whom their interest is directed. ASD people

Relationships and Social Skills

149

may choose their partners based on some of these fixations, such as particular hairstyles or body shapes (Aston 2003). Adolescents tend to mature physically at the same rate as their peers, but lag behind in social skills and emotional maturation. The media can contribute to informal sexual education, but often misinform. This can cause difficulty for people on the autism spectrum who cannot determine what is realistic and what is show business. Growing sexual drives without the corresponding social knowledge can lead to many embarrassing and potentially troubling situations. For those with moderate mental handicaps, behaviours such as touching other people’s private parts, public masturbation, and self-exposure can cause serious problems (Koller 2000).

Dealing with masturbation Koller (2000) recommends using a time and place approach with masturbation; in other words, teaching the individual to engage in masturbation only in appropriate places at appropriate times. This author highly recommends the place be the person’s bedroom with the door closed (providing they do not share a room with anyone else). If masturbation begins in public, the person should be redirected to wait until they can go to their bedroom. If out in the community, remind the person when and where they can masturbate and direct them to a different activity that keeps both their hands busy with an object. It may help to redirect the person to a task that involves a lot of physical activity. Teaching this can be supplemented with visual scripts of where and when masturbation is permissible. Scripts need to be very specific, as loopholes can create some very interesting problems. Masturbation, in private, can be an acceptable way to relieve sexual pressure safely. It is this writer’s opinion that masturbation is a functional skill that needs to be taught. The ability to safely relieve sexual tension is an outlet that many individuals with ASD may require. Instruction in masturbation should be part of the education around sexuality and sexual safety that individuals with ASD require.

150

Counselling People on the Autism Spectrum

COUPLES STRATEGIES FOR ASD MARRIAGES The partner who is not on the spectrum is often the person who makes the most changes in the ASD marriage in accommodation to the developmental disability of the partner. Often the use of visual supports, such as checklists, memos, and cue cards, are recommended to address miscommunication and apparent forgetfulness. Writing things down appears to be a robust strategy to bridge communication gaps. Initially this may feel stilted and less than romantic for the NT partner: “The NT partner may find trying to change her way of communicating tiring and unnatural. Encouragement and support while offering understanding will be crucial to her well-being and self esteem that is probably already very low” (Aston 2003, p.12). It is confusing for a partner to make these accommodations when the ASD partner appears intelligent and often quite capable in some areas. For some partners, it may feel like she is parenting her partner. Offering a comprehensive understanding of the characteristics of the autism spectrum can help the NT partner adjust. It may be important to clarify that using visual tools and being exact in communication will not lessen the relationship over time. In fact the reverse will happen. Once the communication issues are cleared up and the ASD partner understands how he can please his partner, the relationship will begin to heal and build (Aston 2003).

ADOLESCENCE AND PUBERTY Adolescents may lack self-esteem as they become aware of their differences as adolescents and do not feel like they belong to any social group. The sense of not belonging may lead to depression, problems with self-esteem, and self-concept. Often their social skills and social awareness are those of a much younger child (Attwood 2003; Koller 2000; Smith-Myles and Simpson 2001). ASD adults (and youth) can read more into a friendly act than intended. A mentor can help this person understand the meaning of the friendly act and how to determine who is likely to become a friend and who is only a colleague or fellow student. Intense infatuations are common, and can lead to difficulty. Desperation for a friend can lead to

Relationships and Social Skills

151

vulnerability to sexual and physical abuse, as the other person’s dishonourable intent may not be recognized (Attwood 2003). However, lack of social skills and adolescent peer relationships may be a protection from involvement with delinquent peers (Green et al. 2000). It is this writer’s observation that most youth with ASD are rule enforcers (Attwood 1998), which would not make them very popular with the delinquent crowd. This author has observed that their poor social skills make the person with ASD a high risk in regard to exposing delinquent peers in criminal activities, also making them unlikely compatriots of delinquent peers. This writer has seen children with ASD teased and set up by delinquent peers, but never fully accepted within their ranks, even as a scapegoat. Delinquent children tend to set up the child with ASD knowing that they cannot adequately defend themselves. This insidious bullying can lead to depression and anxiety (Attwood 2004).

Teasing Teasing is a complex social behaviour that can initiate social engagement, negotiate group membership and hierarchies, and ostracize. Teasing is most common among peers and family members. This aspect of socializing is very difficult for children and adults on the autism spectrum as they often cannot understand teasing and may take teasing literally. They may not know how to tease appropriately, and often do not know when to stop teasing. To understand teasing an individual must be able to understand intent, hidden intent, pretending, and nonliteral communication, all of which are areas of difficulty and deficit for people on the autism spectrum. The nonverbal indicators of teasing may prove to be the most challenging for people on the autism spectrum, as the nonverbal language is difficult to interpret, and may be subtle or exaggerated, either condition which is apt to be missed by someone on the autism spectrum (Herrey, Capps, Keltner and Kring 2005).

SOCIAL SKILL DEVELOPMENT Social skill development is a common area of intervention for people on the autism spectrum, as their social impairments are often quite noticeable. Skill development needs to include the teaching of skill components

152

Counselling People on the Autism Spectrum

as well as when to use the skill. There may be a need for some practice in the actual situations before the skill transfers out of a clinical setting. Social skill development is often successfully implemented in a group format, as this provides a safe arena to practise social skills. Sometimes individual instruction prior to group instruction is helpful (Attwood 2003; Marks et al. 1999; Sofronoff and Attwood 2003). Poor social skills are related to the inability to understand other people’s perspectives, known as theory of mind, and the inability to process emotional information, as well as a difficulty with emotional recognition (Ponnet, Roeyers, Buysse, DeClercq and van Derheyden 2004). People on the autism spectrum may appear to cognitively understand the emotions of other people, but do not use visual facial emotion cues accurately to read the relevant emotions. Reciprocal interactions may be impaired. Only about 20 per cent of people on the autism spectrum can pass a first order theory of mind task, which involves attributing different beliefs to another person that the individual does not have himself. More capable people on the spectrum can pass second order theory of mind tasks, which is when you can correctly identify someone else’s beliefs about a third person (Ochs, Kremer-Sadlik, Sirota and Solomon 2004). Time needed to process social information to make inferences about another’s thoughts and feelings is often much longer than the instantaneous processing that social situations require. Understanding social nuances may lag far behind their intellectual ability. High functioning people on the autism spectrum have difficulty inferring emotions correctly using pictures of other people’s eyes and voice recordings of intonation. These nonverbal cues, which guide typical individuals towards a correct assessment of emotion, are not utilized effectively by people who have ASD. Awareness of emotion is often lacking, and people with ASD often respond poorly to others’ expressions of emotions (Ochs et al. 2004; Ponnet et al. 2004). Social awareness involves a sense of social consequences. Most people with ASD lack insight into their own difficulties, but Green et al. (2000) found that a third of their sample of youth and young adults with Asperger’s had no insight whatsoever into their own difficulties. People with ASD make fewer correct interpretations of intention and mental state during tasks like understanding awkward moments, or when

Relationships and Social Skills

153

someone is sarcastic or lying. People on the autism spectrum have difficulty detecting when a faux pas has been committed, and often do not recognize their own faux pas (Baron-Cohen, O’Riordan, Stone, Jones and Plaisted 1999).

Social skill instruction Social interactions are rapid and thoughts are invisible to people on the autism spectrum. The ability to shift thinking rapidly is one of the best predictors of social skill development. Unfortunately, as previously discussed, this is an area of difficulty for people with ASD (Attwood 2003; Tsatsanis 2004). Often it is the skill of social cooperation that is underdeveloped. To facilitate the learning of cooperation, children with ASD should experience more cooperative games than competitive ones. Children with ASD require a lot of instruction on how to lose gracefully. Cooperative skills that need to be taught are: accepting of others’ suggestions, determining the common goal and working towards it, and encouraging other peers (Attwood 2003). Conversation can be confusing, but can be explained using a metaphor of a tennis game or catching and throwing the ball. Social conversation is like a tennis game, where the ball is bounced back and forth, and the objective is to keep sending the ball back to the other person (Marks et al. 1999). Staying on topic is framed as throwing back the same ball. Teaching conversational turn taking with a talking object, like a talking stick, to make the give and take of social conversation concrete, may be helpful. Charlop-Christy and Kelso (2003) used cue cards and written scripts to teach social conversation skills with good results with children. This writer recommends explicit instruction regarding identifying emotional expressions, and then to take this instruction out into various situations to facilitate generalization. The addition of social-interpersonal problem solving is also recommended. Even with social skill instruction, many social situations are confusing at best. Often the confusion can be cleared up with some interpretation. Tools that can facilitate interpretation tend towards making social situations visual, such as cartooning out the situation (Gray 1994b, 1995), including thoughts,

154

Counselling People on the Autism Spectrum

explaining the hidden social rules, and exploring choices and consequences (Hodgdon 1995; Smith-Myles and Simpson 2001). One strategy that is proving effective is using a video camera analogy for the mind. With this strategy, the person with ASD is asked to imagine that what other people experience is similar to that of a video camera that has observed the same situation. For some unknown reason, individuals with ASD can correctly infer what a person has seen or the knowledge that they have gained from a situation when they imagine what a video camera would know, hear, and see in the situation. The mind is compared to that of a video camera, in that it becomes a storage device for sound, sight, and knowledge. This framework has been effective in helping children on the autism spectrum to understand what information and perceptions another person would have of a given situation (Baron-Cohen et al. 1996). When examining social situations, the therapist and client need to look for the salient features that provide clues about social rules, and then brainstorm for possible options of ways to respond or solve the social dilemma, and then look at the possible consequences of each of the choices. Once a clear choice with good consequences is identified, planning needs to happen to make the choice occur. All that is left then is to try out the solution and evaluate the results. This process can be made visual through a choice chart (see Figure 3.7, p.94). This problem-solving process can be used to review a social situation that did not go as planned to determine where it went wrong and what possible things could be done differently in the future (Smith-Myles and Simpson 2001). Teach how to use self-talk strategies, as these are successful social strategies used by people who are not on the autism spectrum (Marks et al. 1999). Hidden social rules and procedures need to be explicitly taught (Smith-Myles and Simpson 2001). One format this writer has found useful is called a book of life. All the relevant social information that an individual with ASD would need is recorded and personalized to the individual’s particular situation. The book details basic things like bus rules, scripts for leaving messages on someone’s answering machine, and rules about inviting someone over for a movie, and other sundry everyday information. Social actions are also included in the book. Social actions can be grouped into those that are friendly and those that are unfriendly.

Relationships and Social Skills

155

Unfriendly actions are things like interrupting and standing too close, while friendly actions are helping someone and coping with mistakes. The ASD person needs to learn how to determine when acts are accidental or intentional (Attwood 2003). Sometimes using the aforementioned concept of other people’s minds being like video cameras can facilitate this understanding (Baron-Cohen et al. 1996). Making social skills visual and highlighting social rules facilitates learning. There is a need to teach coping skills, such as self-calming skills and how to handle confusion or frustration, to combat the negative thinking and faulty assumptions common with ASD social meaning making. ASD people need to learn how to cope with things when they do not go the way they want. Teaching key social phrases may help (Marks et al. 1999). Social skill instruction usually implies having social partners to facilitate teaching. Social skills groups have been shown to have good effect in helping adolescents and adults on the autism spectrum develop social skills. Specific performance feedback is essential. Use of videotapes to show the learner’s performance of good social skills is helpful (Marks et al. 1999).

Social Stories™ Social Stories™ are an adapted form of bibliotherapy developed by Carol Gray. The social situation is detailed in a comic strip or story format (Attwood 1998; Gray 1994b). The story highlights the salient features of a situation, providing descriptions of the situation, what the expectations are, and the reasons behind some of the occurrences of the situation. Comic Strip Conversations take this a step further by detailing other people’s thoughts in thought balloons. They are created with the individual who has ASD to determine their interpretation of the situation (Kerr and Durkin 2004). Emotion can be colour coded by using different colours in the thought or word balloons. This can provide the counsellor with an idea of the person on the autism spectrum’s perception of emotion, which can often be incorrect. The comic strip can be redrawn with corrections to provide an accurate view of the situation, and some possible options of what to do (Attwood 1998).

156

Counselling People on the Autism Spectrum

Social Stories™ have been used effectively to teach social skills, and have been shown to have a positive effect on changing social behaviours, although they are mostly used with children and adolescents (Sansosti, Powell-Smith and Kincaid 2004). An adult adaptation of Social Stories™, called social articles, can be expected to show positive results based on the successful use with adolescents (Attwood 1998). “Based on current research and informal experience my theory is that social articles may be effective for some adults with ASD” (Carol Gray, personal communication, October 29, 2005). Social articles are similar to Social Stories™, with the exception that they are more like a newspaper or journal article regarding a particular social topic. Social articles provide more background, reasons, and detail regarding a social practice, and less direction. Social Stories™ and Comic Strip Conversations can provide social scripts as well. People with ASD have fewer social cognitive scripts than people not on the autism spectrum. This was confirmed by Trillingsgaard’s (1999) study of children on the autism spectrum. These children were unable to produce basic social scripts of common, everyday social routines. People on the autism spectrum have greater difficulty generating appropriate cognitive scripts for various social situations, but can identify about the same number of core social scripts as controls when viewing a videotape, indicating that they can recognize social cognitive scripts but are impaired in generating them. When in a structured situation, predicting the next sequence in an unknown script improved. However, Trillingsgaard (1999) discovered that although verbal recall of scripts was evident, the ability to use these scripts effectively in social situations may be impaired. People with autism can use the understanding of social rules and scripts to follow the rules and scripts, and to recognize script and rule violations. Social Stories™ or articles become a guidebook to different social situations, providing instruction and guidance much like a traveller’s guide to a foreign country: “The story itself becomes a ‘how to’ book for initiating, responding to, and maintaining appropriate interactions for individuals with ASD” (Sansosti et al. 2004, p.195). Social Stories™ are often read prior to entering the target situation, becoming a reminder of the social expectations and salient features. Social Stories™ can also be used to teach problem-solving skills through the use of a problem-solving script.

Relationships and Social Skills

157

Social Stories™ are created for each person with a focus around a problematic situation or behaviour. The salient cues or features of the situation are highlighted to provide understanding of what elements of the situation indicate that a particular response is required. The story provides the who, what, where, when, how long, and why information that is hidden to people on the autism spectrum (Sansosti et al. 2004). Stories are written at a level that the individual can easily read. For nonreaders, the story is read to the person using language that the individual easily understands. There are several types of sentences used. Description sentences provide the description of the situation including the salient features. Directive statements provide the instructions of what is expected to be done in this kind of situation. Perspective statements offer the perspectives and feelings of others, as well as the possible perspective of the person for whom the story was written. Affirmative statements outline the cultural beliefs. Control sentences use analogies to facilitate understanding, and cooperative sentences provide information regarding who may be able to offer help when asked in this situation. It is a general rule to use a ratio of two to five descriptive, affirmative, or cooperative statements for every directive or control statement. The emphasis of the story is to provide information and facilitate understanding. The understanding of the story must be assessed to determine if it will be effective, and to clear up any misunderstandings (Attwood 1998; Gray 1994a; Sansosti et al. 2004).

Using computers to teach social skills Computers and virtual reality formats have been shown to be successful in teaching social skills (Moore et al. 2000). For many people on the autism spectrum, using computers to teach social skills leads to faster learning, as distractions and anxiety are lessened. These skills were shown to be transferred into real life situations. People on the autism spectrum tended to treat the virtual reality environment as if it were real. This may become an avenue to provide therapeutic benefit between sessions, if computer-based instructional programs were used as homework. This writer has successfully used virtual reality games that emulate real life situations as social teaching tools (Parsons, Mitchell and Leonard 2004).

158

Counselling People on the Autism Spectrum

Video modelling of social skills The use of videos for teaching social skills is a new intervention that shows much promise. One of the useful features of videos as social skill instructional tools is that the camera can focus in on the salient cues, thus highlighting them for the individual. Watching a video also tends to capture the individual’s attention and is likely to facilitate the screening out of extraneous stimuli in the environment. Children on the autism spectrum tend to learn scripts from videos, often displaying remarkable recall of favourite movie videos. This propensity to learn from videos is captured through video modelling. Life skills can be learned by imitating the actions displayed on a video. Videos can be more effective as training tools when the actors or actresses are similar to the learner CharlopChristy and Daneshvar 2003; Charlop-Christy, Le and Freeman 2000). Case study: Why, hello there Judy is a nonverbal woman with ASD who had an unfortunate habit of coming up to strangers and hugging them. Judy did not seem to understand that this was not appropriate. Several social instructional methods failed, until this writer noticed that Judy modelled what the characters in her favourite videos were doing. Judy was given a video of how to say hello to strangers, with a verbal commentary explaining what to do and why. The next time the writer came to see Judy, she took my hand and gave it a hearty shake, instead of the customary bone-crushing hug. When the writer left, Judy waved a goodbye for the very first time in her life. Using videos to model appropriate social skills appears to be effective, and can be paired with self-monitoring to enhance effectiveness. The individual needs to have adequate imitation skills for video modelling to be an effective intervention. For some clients, videotaping their behaviour for later review can serve as an intervention tool, as individuals with ASD may be unaware of their behaviour (Meyer 1999; Nikopoulos and Keenan 2003). Video modelling is not effective when there are other behaviours that interfere with performing the skill being modelled. Care must also be taken to ensure that the skills being modelled are within the individual’s ability to learn. On occasion, some of the modelled skills may require preteaching (Nikopoulos and Keenan 2003).

CHAPTER 7

Stress and Relaxation Stress is a constant factor in the lives of people on the autism spectrum, particularly in situations that involve social interaction. Being and feeling stressed is prominent in emotional disclosures of persons on the spectrum. There is a high comorbidity of depression and anxiety disorders in autism spectrum disorders, and stress is a contributing factor. Sensory abnormalities common to autism spectrum disorders contribute to stress levels as sensory information can be confusing (Gillott et al. 2001; Glenn et al. 2003; Groden et al. 2001; Jones et al. 2001; O’Neill and Jones 1997). Sensory overload can contribute to stress, and tends to result in behavioural disinhibition (Laurent and Rubin 2004; Raymaekers et al. 2004). Behavioural disinhibition is when an individual loses the ability to slow down or reduce a response, and cannot stop themselves from responding impulsively. Disinhibition creates more stress as the person loses control over their behaviour and levels of anxiety increase. This can become a vicious cycle. Instruction in techniques that include stress reduction has been shown to have positive results, including the reduction of aggression, and can also be effective with people who have a cognitive disability as well as an autism spectrum disorder (Mullins and Christian 2001; Sofronoff and Attwood 2003). Many people on the autism spectrum do not have strong social support networks and may be socially isolated (Gustein and Whitney 2002; Orsmond et al. 2004). Social isolation negatively impacts stress and coping (Sarafino 2002). Some people on the autism spectrum may not know when to turn for help, or who to turn to. Having a social support network has been identified as being a key component in the

159

160

Counselling People on the Autism Spectrum

success of people who are on the autism spectrum (Grandin 1996; Willey 1999). Stress reduction strategies are often effective for people on the spectrum. However, sources of stress must be considered as well. Much of the daily stress revolves around social situations and not knowing what to do, or misunderstanding what went wrong. It is often the unstructured times, such as coffee break, lunch, or recess, which can be the most stressful time periods. Unexpected change can be a great source of stress or dealing with the other-than-expected. Advanced preparation, social scripts, activity checklists, and regular routines are useful strategies to reduce social anxiety, which lowers overall stress (Aston 2003; Attwood 2003). Change in environments can also be a source of stress for people on the autism spectrum (Groden et al. 2001). Groden et al. (2001) developed the first stress survey for people who are on the autism spectrum. Although it has not been researched intensively to date, it is the only stress measurement tool that recognizes the unique characteristics of people on the autism spectrum. Some of the areas of stress that loaded heavily were changes in environment, transitioning activities, sensory components, and prevention of ritual completion. Positive stress measures such as receiving reinforcement were included in the survey, recognizing that good stress, or eustress, can contribute to stress levels in people who are on the autism spectrum.

MEANING MAKING AND STRESS Meaning attributions of situations can increase or alleviate stress. Causality meaning attributions that people who are on the autism spectrum make are often incorrect, and may contribute to feelings of stress. Often they are unaware of how their actions impact situations, which means that they make incorrect causal attributions in regard to their own actions. Causation attribution and meaning making are based on having good theory of mind skills. The difficulties in understanding another person’s probable thoughts and feelings negatively affect causal attribution and meaning making (Hill et al. 2004; Leudar et al. 2004; Park and Folkman 1997).

Stress and Relaxation

161

The meaning of the personal significance of an event also impacts the experience of stress. People on the autism spectrum make unusual associations between events, and it is reasonable to assume that they may make incorrect interpretations of the personal meaning of events, possibly creating higher stress levels. Rumination or perseveration on the meaning of an event may also exacerbate personal stress (Park and Folkman 1997). Case study: Bad shirt day Thomas is a child with ASD who based his prediction that his day would be difficult on the colour of his teacher’s shirt. He would become anxious when the teacher wore black on his or her shirt. Seeing black on the teacher’s shirt created anxiety, and therefore stress. Thomas assessed his ability to handle the event of black on his teacher’s shirt as something that he did not have the capability to cope with. His assessment of coping ability also contributed to increasing his stress. Thomas would perseverate on whether his teacher would be wearing a black shirt every morning, creating stress for himself early in the day. For Thomas, shirt colour had predictive meaning. In a sense, Thomas taught himself to be phobic of black shirts. It took a long process of desensitization and reframing before Thomas no longer considered black shirts a hallmark of a bad day. Part of that relearning involved diagramming out how events and actions link together, such as his thoughts about having a bad day created stress, which lessened his ability to cope. The diagram showed that shirt colour, in and of itself, affected nothing. Shirt colour was an irrelevant information detail that was accidentally mistaken as a causal factor. This logic helped Thomas to understand how he fuelled his anxiety. Choice points to turn the day around were included, to show Thomas where he had several opportunities to change his thinking and change the day. There are two stages in the appraisal of stress. In the primary stress appraisal, stress is assessed for degree of harm/threat or challenge. The secondary appraisal determines whether the person feels that he or she has the personal resources to cope with the situation. Stress is the result of perceiving the threat or challenge to be beyond the coping resources.

162

Counselling People on the Autism Spectrum

Meanings are attributed at both assessments. Stress is a result of the cognitive appraisal of the stressor as being one that the person cannot easily cope with and/or is perceived as a serious threat. People on the autism spectrum tend towards having a low sense of self-efficacy and have limited coping skills. They have difficulty knowing what to do in new situations and frequently cannot take what they have learned from one situation and apply it to another. People with ASD, given the above characteristics, may correctly assess that they do not have the ability to cope with a stressful situation, leading to an increase in secondary stress (Sarafino 2002; Wagenaar and La Forge 1994).

Meaning reattribution Meaning reattribution can reduce stress levels. Reattributions of causation that increase the possibility of having some personal control over parts of a situation tend to improve outcome. A sense of self-efficacy regarding a stressful situation ameliorates the effects of stress. Attributions regarding self-efficacy lie on three dimensions: internal or external locus of control, stable or unstable causes, and global or specific causal factors. Faulty attributions or attributions that tend towards an external locus and global and stable causal factors are more likely to result in lower self-efficacy (Park and Folkman 1997; Sarafino 2002). In the case study above, when Thomas was able to attribute a different meaning to his teacher’s black shirt, such as that his teacher ran out of other colours to wear, he was able to cope more successfully with black shirts on his teachers.

STRESS MANAGEMENT There are three primary intervention areas of stress management. These are: problem-solving interventions, cognitive reappraisal strategies, and relaxation training. Often stress reduction treatments involve a combination of all three approaches. No matter what approach you use, the person on the autism spectrum may require assistance in learning to identify their stress continuum and their related stress symptoms (Wagenaar and La Forge 1994; Sarafino 2002).

Stress and Relaxation

163

Identification of stress symptoms Identification of the signs and symptoms of various stress levels may be facilitated with the use of visual aids like stress thermometers. Physical symptoms and behavioural signs of the different levels of stress should be recorded to show the progression of stress responses and symptoms. Identification of the different stress levels lends itself to suggesting different stress-reducing techniques for different degrees of stress (Attwood 2003; Sofronoff and Attwood 2003). Some people on the autism spectrum are not attuned to their body’s signals. Specific instructions to pay attention to rates of breathing and muscle tension may need to be provided. Identification of the early signs of becoming stressed leads to earlier use of stress reduction techniques, which are often more effective earlier on in the stress response (Sarafino 2002; Sofronoff and Attwood 2003). Stress coping responses can be described as a set of tools, much like the coping toolbox described by Sofronoff and Attwood (2003). Coping tools would involve the cognitive stress tools, such as meaning reattribution, physical stress reducers, such as regular exercise, and behavioural stress tools, such as taking three deep breaths or progressive muscle relaxation techniques. Tangible items, such as worry stones or stress balls, can serve as relaxation cues. The stress and coping cycle is introduced to the client to provide an understanding of the physical and cognitive components of stress, and the key component of the cognitive appraisal. If the appraisal is that the stressor is greater than the person’s ability to cope, then the situation will be perceived as stressful. Self-talk is explored to determine how it contributes to the experience of stress. Once the person’s experience of how they create their own stress is understood, skills are taught to combat stress and correctly assess the situation. In the final phase, skills are practised (Hiebert and Malcolm 1988; Malcolm and Hiebert 1986).

Breathing to reduce stress A common response to stress is to engage in shallow breathing. Deep or diaphragmatic breathing alleviates stress and facilitates mental relaxation

164

Counselling People on the Autism Spectrum

(Cormier and Nurius 2003; Kabat-Zinn 1990). Learning to breathe deeply may be the simplest strategy to combat stress. When teaching a client on the autism spectrum to breathe deeply, it is helpful to ask them to breathe out slowly first, as this promotes deep inhalation (Ory 2002a). It is recommended that breath be passed through the nostrils. Teaching the concept of breathing from the belly or “belly breathing” (Kabat-Zinn 1990, p.54) is facilitated when the client is instructed to place their hands on their belly and chest to monitor the movement of their diaphragm while they are breathing. Identifying which hand moves more allows the client to determine if they are breathing deeply. The use of diagrams to show the movement of the abdomen during belly breathing is helpful as well. Deep breathing is a portable strategy that can be engaged in at almost any time when feeling stressed. Practising deep breathing several times a day will facilitate its use when facing a stressful situation (Cormier and Nurius 2003).

Progressive muscle relaxation Progressive muscle relaxation (PMR) is a concrete strategy that does not rely on abstract thought or imagery, therefore lending itself for use with people on the autism spectrum. Part of progressive muscle relaxation involves scanning the body to identify areas that may be tense. This helps the person on the autism spectrum to become aware of their bodily sensations. PMR promotes personal control over muscle tension, giving the person some feeling of self-efficacy regarding their bodily sensations. This sense of having some control can in itself alleviate some of the feelings of stress. Being able to relax is an invaluable skill for someone on the autism spectrum. This writer has experienced many positive results from teaching someone who has ASD relaxation skills, including a positive impact on task performance (Cormier and Nurius 2003; Sarafino 2002). When teaching progressive muscle relaxation, be aware that the client may interpret your language as indicating that they are to make their muscles as tense as they possibly can, part of their all-or-nothing ways of thinking. This extreme form of tensing can cause injury. Clients must be made aware that they are to tense their muscles, but not to tense up as hard

Stress and Relaxation

165

as possible. The client should be reminded that if the tension is painful, they are to not tense the muscle so hard. A helpful analogy when teaching progressive muscle relaxation is that of a robot and a rag doll (Miranda and Presentación 2000). The robot represents a tense body, while the rag doll represents a relaxed body. Modelling what tense and relaxed muscles look like is recommended. This writer has used toys to demonstrate this concept, asking the client to feel the softness and hardness of each toy. This author will also allow the client to feel her arm muscles while tense and relaxed, to facilitate a comparison regarding tenseness. The client is then instructed to try to do the same with his or her arm muscles. The sequence of progressive muscle relaxation should involve a manageable number of steps for the person with ASD. For those who have some cognitive impairments, memory, or attention difficulties, this author recommends that the sequence be shortened to seven or four steps, such as those outlined in Table 7.1, breaking the sequence into four groupings of the arms, face and neck, body, and legs. Some people cannot coordinate both arms and both legs at the same time. For these clients, Table 7.1 Progressive muscle relaxation muscle group breakdown Seven muscle groups

Four muscle groups

1. Dominant arm, including forearm, biceps, and hand

1. Right and left arms, including forearms, biceps, and hands

2. Nondominant arm, including forearm, biceps, and hand

2. Face and neck

3. Facial muscles, including forehead, nose, eyelids, jaws, and mouth

4. Legs, including upper legs, lower legs, and feet

4. Neck, by pressing chin towards the chest 5. Chest, shoulders, upper back, and abdomen 6. Dominant leg, including thigh, calf, and foot 7. Nondominant leg, including thigh, calf, and foot

3. Stomach, chest, and back

166

Counselling People on the Autism Spectrum

using seven steps may be preferable, where each arm and leg is treated as a separate step (Cormier and Nurius 2003; Singh et al. 2003). Table 7.1 outlines the muscle group breakdown. The sequence of progressive muscle relaxation can be made visual by creating a picture script of the sequence, which has been shown to facilitate learning for people on the autism spectrum. Mullins and Christian (2001) successfully used 13 steps with an adolescent that were described and pictured in a relaxation book. Progressive muscle relaxation is a key component to managing the physical sensations of anxiety. Generally, clients are shown how to do progressive muscle relaxation, and are then taught to use it daily, as well as during everyday situations. This is known as applied relaxation. Over time clients are asked to use progressive muscle relaxation during stressprovoking situations, moving up their stressful situation hierarchy while using PMR, building their skill as they progress (Rodebaugh et al. 2004; Sarafino 2002).

Relaxation objects Attwood (2003) suggests using tangible objects as relaxation cues. This author has used relaxation items as props for engaging in relaxation strategies. One prop that has been successfully utilized is the stress ball, which consists of a squishy round object that is very difficult to rupture. Others are soft, rubbery balls that have multiple soft protrusions, often known as koosh balls. This author has taught progressive muscle relaxation using the stress balls as props, where the client places the squishy object on a spot on their body, such as between their chin and their chest. Muscle tension is demonstrated by asking the client to hold the stress ball in that location on their body. In a pinch, this author has used rolled up socks as objects to squish. One caution is noteworthy, however. It has been this author’s professional experience that using socks as relaxation objects often involves a lot of laughter, particularly when the socks fall. Laughter is a stress reducer, but may not be the appropriate strategy to use in a situation where being quiet is valued.

Stress and Relaxation

167

Stress inoculation Stress inoculation is the strategy of teaching someone proactive ways to manage stress to enable them to cope with inevitable stress more effectively. It involves both physical and cognitive coping skills. Stressful situations are anticipated, and stress inoculation techniques are part of a stress action plan. Having an action plan can significantly reduce feelings of stress (Cormier and Nurius 2003; Sarafino 2002). Stress inoculation training involves education around the stress response and identification of stress triggers, skill acquisition, and skill application. Stress inoculation has been successfully used with cognitively challenged adults (Malcolm and Hiebert 1986). Stress inoculation is a preplanned and somewhat scripted process, which lends itself well to use with people on the autism spectrum, as they benefit from planned and practised responses. For people on the autism spectrum, having a plan to address troublesome situations facilitates remaining calm and coping. The rationale for stress inoculation is that there will always be situations that trigger emotions such as anger or anxiety, where acting on the emotion will not help the situation. When these trigger situations are encountered, it is time to engage in stress reduction activities to help the person cope with the situation, thus reducing stress (Cormier and Nurius 2003; Sarafino 2002). When teaching stress inoculation, the use of visual aids is recommended. Stress thermometers or stress and anger symptom lists are helpful visual aids for people with cognitive challenges, including those with developmental disabilities (Malcolm and Hiebert 1986). Listing the client’s cognitive distortions that escalate stress facilitates cognitive restructuring of those thoughts. Breaking down the stress pattern into different phases, such as the anticipatory phase, the confrontational phase, the coping phase, and the assessment and reinforcement phase, helps to identify which coping strategies are most useful for the particular phase of stress (Cormier and Nurius 2003). These phases can be drawn in a cartoon format to indicate progression and possible coping strategies (see Figure 7.1). The stress inoculation plan can be created in a social story format as well.

168

Counselling People on the Autism Spectrum

Anticipatory phase

Oh, no! I have to finish this reprot by Monday! This is so stressful.

Coping phase

They take a deep breath… Calm down… I CAN do it. It will be okay. I can get help if I need to. See? It’s not THAT bad!

Confrontational phase

I have to start writing… But I can’t think of anything I’ll never do it!

Assessment and reinforcement phase

Hey! I did it! I took some deep breaths and asked for help, and it worked! I followed my stress plan, and everything went okay!

Figure 7.1 Stages of stress Individuals who have ASD may not recognize that there are several steps to feeling stressed. Cartoons that depict the stages of stress can provide examples of the emotional increase and decrease that accompanies the stages of stress. Cartoons allow the counsellor to include personalized stressful thoughts and coping thoughts, which may facilitate active coping with stress.

Practising the strategies in a stress inoculation program should occur in real, everyday situations for transference to occur. It may be helpful to enlist the support of family members to facilitate skill use in everyday situations. Failure to use stress inoculation strategies in everyday, real situations results in less than optimal benefit for the client. Deliberate practice may include the use of a stress hierarchy, where coping practice starts with intentional exposure to mildly stressful situations, with coping successes used as criteria to move to practising coping with more stressful

Stress and Relaxation

169

situations (Cormier and Nurius 2003). Of course, everyday stressors provide opportunities to practise and fine-tune coping strategies.

Mindfulness-based practices Mindfulness-based strategies, or mindfulness meditation, shift the focus from the emotion, such as anger or fear, to a more neutral item, such as a body part or breathing. Mindfulness-based anger control has been used with persons on the autism spectrum, including some with mental retardation. Mindfulness meditation is a relatively simple, four-step process of identifying emotional arousal, shifting attention to a neutral part of the body, calming down, and making a choice of what to do (usually walking away with a smile when the anger was successfully controlled), thus making this technique one that more challenged persons can complete. Part of the shifting of attention is to change the body posture to one that is neutral or calm, and breathing naturally. The person is instructed to focus on their breath or a body part for several moments, thus distracting them from their emotion and providing sufficient time to become calm. Creating a visual script of the mindfulness meditative procedure facilitates learning (Singh et al. 2003). Case study: Ticking time bomb Nathan had difficulty remaining calm. As a student with ASD in high school, Nathan found his life to be very stressful. Nathan would succumb to the stress in class and would become emotionally explosive. Nathan recognized that he felt stressed, but had difficulty following multiple step instructions to relieve his stress. Nathan was able to identify when he was becoming stressed, and could focus inward on his navel. Focusing on his breathing distracted him from his stress and gave Nathan an awareness of slowing down his breathing, resulting in a feeling of greater relaxation. When he felt relaxed, he could focus on what was going on around him. This enabled him to cope much better with high school life.

CHAPTER 8

Emotional Expression, Identification, and Regulation People on the autism spectrum have difficulties with emotional identification, expression, and regulation (APA 1994). Language to express emotions is often impaired or developmentally immature. When asked to identify their feelings, a person with an autism spectrum disorder (ASD) will frequently and accurately indicate that they do not know what emotion they are experiencing (Aston 2003; Meyer 1999). Feelings and thoughts often seem unconnected. The inability to express emotions verbally at times can lead to their behavioural expression (Attwood 1998). Impairment of emotional expression, regulation, and identification lead to social impairments, which have negative impacts on many different areas of life, such as education endeavours, careers, and family relationships (Elliott and Gresham 1991; Gustein and Whitney 2002). It is often the difficulties with emotions that bring couples where one has an ASD into counselling. Emotional dysregulation and inappropriate emotional expression, including aggression, often bring children with ASD to the attention of counsellors (Aston 2003; Attwood 1998).

EMOTIONAL IDENTIFICATION People on the autism spectrum often do not identify the varying degrees of emotions that they may experience and may require specific instruction in how to identify their internal emotions, including physical sensations of emotions (Attwood 1998; Meyer 1999). Often people on the

171

172

Counselling People on the Autism Spectrum

autism spectrum do not monitor their emotions effectively (Aston 2003). They may also misinterpret the physical symptoms of different emotions. Case study: Fast and furious Danny was a young adolescent with Asperger’s syndrome who came to counselling regarding emotional management, primarily anger. When discussing emotions with Danny, this writer discovered that his language and enactments of emotion tended to be extreme. For example, he was either very mad or not mad, but there was nothing in between. The writer drew a line with “not mad” at one end and “very mad” denoting the other extreme, indicating to Danny that there was a lot of room between these two feelings. Danny, with the help of a feeling word list, was able to add to the anger scale. Descriptions of how Danny would feel in his body were added to these new words. Danny began to use the anger scale as a way to assess his own feelings. With the addition of words that described varying degrees of anger, Danny was able to determine what degree of anger he felt, and to respond appropriately. Although Danny had a lot more to learn, his expression of anger reduced in severity as he understood that he could “express a little anger at little things, like being a bit annoyed… I don’t have to be furious at everything.” Difficulty with interpreting emotions also occurs when attempting to identify the emotions of others. Often people with ASD fail to use facial cues, such as the appearance of another’s eyes, to read emotional expression. People with ASD tend to use fewer facial cues to interpret emotion, with gaze aversion and poor eye contact being common. They often do not use paraverbals, such as vocal tone, cadence, or rhythm, to determine emotional content of communication (Baron-Cohen, Wheelwright, Hill, Raste and Plumb 2001; Perlman 2000; Rutherford et al. 2002). Case study: How do you feel? Claude, who had autism, was referred by his mother who was concerned that something was going wrong in his elementary classroom. Her concern arose when Claude became distressed if

Emotional Expression, Identification, and Regulation

173

she raised her voice. He would ask her if she were angry with him, regardless of the emotion she was displaying. It became apparent that Claude could not interpret his mother’s facial expressions or tone of voice for emotional content. This writer taught Claude a game about guessing emotions from a person’s tone or face and posture. Claude was instructed on what features to look for when guessing emotion. Claude loved to play this game with his mother. He began to play it with people on the television, particularly the ones on his mother’s favourite soap opera. Claude would turn down the volume and try to guess the emotion from the person’s expression, and then turn up the volume and cover his eyes to guess the emotion from the tone of voice. Although Claude was often mistaken, he learned to confirm his guess, and was no longer distressed by others’ emotions.

Strategies to teach emotional recognition and identification There are several ways to instruct someone with ASD to recognize and identify emotions in themselves and others. However, true empathy or a deep level of emotional understanding may not be possible. It is this apparent inability to truly empathize that is addressed when instructing the ASD person regarding appropriate responses to their own and others’ emotions, as this does not happen intuitively. Emotions, their meanings, and possible responses must be explicitly taught for learning to be effective with people who have ASD. People on the autism spectrum appear to learn facial expressions for different emotions much in the way as someone might learn a code. They may not comprehend that emotional expression is a powerful form of social communication or social deception (Dennis, Lockyer and Lazenby 2000). Emotional recognition, in oneself and in others, can be facilitated by creating visual supports to show and label emotions. Emotional thermometers (see Figure 3.2, p.81) and response scales (see Figure 3.3, p.82) can help clients understand the gradients of emotions or responses. People develop their own unique model of reality, including emotions. As such, each person develops their own continuum of emotions, with their own language for degree of emotion. The use of cards or PostIt notes, which can be ranked along a number line, can help develop such

174

Counselling People on the Autism Spectrum

continuum scales for people with ASD (Hare et al. 2000). Emotional labels, descriptive phrases, and pictures of faces can be used to help clarify the degrees of emotion (see Table 8.1). Clients can develop a list of the physiological and behavioural cues that identify an increase in emotion, and connect them to the particular emotion being experienced. It is helpful to include the purpose that the emotion may serve, such as anxiety or fear being an alert regarding possible danger, and anger being a signal that you are being threatened with some kind of loss. Sometimes teaching emotional identification involves attending to in-the-moment body language, such as fist clenching or head shaking. Often the person with ASD is unaware of the body language signals that they are displaying, and may show conflicting signals such as smiling and shaking a fist (Attwood 2003; Meyer 1999; Perlman 2000). Table 8.1 Emotional scale including possible responses The emotion

How your body feels, acts, or sounds

Possible things you can do when you feel this way

Cross

Forehead feels tight, other muscles may feel tight, voice may get louder.

Tell the other person that you are feeling cross. Explain why you are feeling cross.

Irritated

Forehead muscles are tight, eyebrows move down, voice changes pitch, voice gets louder.

Tell the other person that you are feeling irritated. Explain why you are feeling irritated. Ask to be left alone for a while, if this will help you calm down.

Angry

Muscles are tight, eyebrows are pulled down close to the eye, heart rate increases, voice gets louder.

Tell the other person that you are angry. Let them know what happened that angers you. Tell the person that you need a few minutes to calm down. Go somewhere quiet and calm down.

Emotional Expression, Identification, and Regulation

175

Enraged

Muscles are tight, eyebrows are pulled down close to the eye, heart rate increases, voice gets louder, fists may clench.

Use your words. Tell the other person that you are very angry. Find a place to go to calm down. Do not come back until you are calm. When you are calm, explain what happened that made you get angry.

Furious

Muscles are tight, eyebrows are pulled down close to the eye, heart rate increases, voice gets louder, fists clench.

Use your words. Tell the other person that you are very, very angry. Find a place to go to calm down. Do not come back until you are calm. When you are calm, explain what happened that made you get so very angry.

Note: This tool can be used to graphically display gradients of emotion, and include some of the ways that the individual can recognize this emotional state. Examples of actions are included to guide the individual in how to express the particular emotional state in a socially acceptable manner.

Emotional dictionaries can be used to identify others’ emotions, as these are often misunderstood. Emotional dictionaries involve creating a book of the different emotions, what they look like, feel like, and what to do about them when you come across them. An appropriate range of responses to others’ emotions can be added to this emotional dictionary to facilitate the understanding of what response to another’s emotion is expected and appropriate. Contextual cues need to be highlighted, as people on the autism spectrum often fail to use context to extract meaning. Some of the images and words that the ASD person associates with a particular emotion may seem odd, as sometimes they may have odd associations with feelings (Attwood 2003). Case study: At a loss for words Todd, an adult with ASD, sought counselling because he had difficulty expressing emotions. Todd often described an image that was associated with how he felt, as he could not always find the language. However, many of Todd’s images were disturbing to the people around him. He would describe knives and blood when he was angry or afraid, and coffins and tombstones when he was

176

Counselling People on the Autism Spectrum

saddened. However, when Todd was happy or excited, he talked about plumbing fixtures, such as shiny faucets and taps, as these things were his favourite interests. A book was created that associated Todd’s expressions for feelings with words more commonly used to express that feeling. Todd was asked to refer to his book when he wanted to express how he was feeling, and to use the feeling words in the book (listed in a column beside his descriptions of the feelings). Identification of these idiosyncrasies may facilitate better emotional understanding. For example, a person’s favourite subject, like microchips, may be one of the items found in their emotional dictionary on the page dedicated to happiness words, and balancing cheque books may be found on the page dedicated to frustration (Attwood 2003). It is helpful for the person to learn that not everyone loves microchips and hates balancing cheque books . Emotional understanding can be facilitated by the use of Comic Strip Conversations. Colours can be used to signify the underlying emotion of a communication, as each emotion can be colour coded. The benefit of using these visual approaches is that thoughts can easily be included in thought bubbles. Using a Comic Strip Conversation format, you can review situations that have occurred and highlight salient cues and link emotions to thoughts and actions. Particular care needs to be paid to identifying the salient emotional cues and behaviours, as often the wrong cues are attended to, resulting in a misunderstanding of others’ emotions and intent (Attwood 1998, 2003; Gray 1994b; Smith-Myles and Simpson 2001). Attwood (1998) uses the metaphor of being a detective or scientist who is looking for information regarding emotions being expressed, and not to come to any conclusions until all of the information is examined. Attwood (2003) recommends teaching emotions starting with simple and positive emotions such as happiness. He recommends exploring emotions in related pairs, starting with the positive emotion first, such as happiness and sadness, relaxation and anxiety. The happy or positive emotions would be framed as “antidotes” (Attwood 2003, p.77) to the negative emotion. Understanding the beginning signs of

Emotional Expression, Identification, and Regulation

177

emotional arousal can be described using a visual metaphor of noticing the “warning lights and instruments on a car dashboard” (Attwood 2003, p.77). This analogy may help clients pay attention to their emotions while they are still manageable, or, if continuing this analogy, before the radiator boils over and the engine seizes.

EMOTIONAL EXPRESSION Learning to express emotions involves more than just words, however, and the actions and nonverbals need to be explicitly taught and described in the emotional dictionary. These skills also need to be practised, both in session and between sessions, before the person with ASD will become somewhat proficient. Videotaping clients as they practise expressing emotions has been recommended as a useful feedback tool (Meyer 1999; Moynahan 2003). Often people with autism spectrum disorders have no idea how they present emotions, and can utilize video feedback effectively. People on the spectrum may use extreme emotional phrases to describe how they feel without the sense of the emotional nuances. This may be a part of their all-or-nothing type of thinking (Ory 2003; Portway and Johnson 2003). Extreme expressions of emotion, such as expressing a wish to be dead when frustrated or upset, are not unheard of. This does not mean, however, that suicidal talk should be ignored. Indeed, with depression being a common comorbid condition of autism spectrum disorders (Ghaziuddin et al. 1995, 1998, 2002), such talk must always be explored, as people on the autism spectrum are not immune to being suicidal (Hardan and Sahl 1999). Case study: Say what you mean Adam was an ASD adolescent who panicked his parents when he spoke of wishing he were dead when he was feeling sad or frustrated. Adam was referred to counselling regarding his suicidal talk. When asked, Adam was shocked that his parents may have thought he wanted to commit suicide, as he had never seriously thought of taking his own life. Adam learned that he had to let other people know how he felt without using suicidal language,

178

Counselling People on the Autism Spectrum

and that people would appreciate how distraught he was without talking about killing himself. This writer worked with Adam to develop language to express himself clearly, including how to ask for help if he was feeling suicidal. Adam’s family were asked to clarify Adam’s suicidal statements, and would ask him to say how he felt in a different way when it was appropriate. It has been this author’s clinical experience that exploring emotional expression and the emotional language used with varying degrees of emotion has been successful in facilitating appropriate emotional expression. Use of a number line, gauge, or thermometer to visually demonstrate varying degrees of expression with appropriate emotional language associated with the intensity of emotion has been a successful strategy (see Figures 3.2 and 3.3, pp.81, 82). This visual tool appears to be helpful when asking for clarification regarding extreme emotional language. It is this author’s experience that the provision of emotional language facilitates the distinction between varying degrees of emotional states. Children on the autism spectrum have been observed to display a mix of emotions on their faces, including both positive and negative emotions. This blending of emotional expression impedes others’ ability to determine the emotion of the child on the spectrum. Sometimes the expression of emotion is atypical, such as giggling when the expected emotions would be remorse, flapping arms or hands when excited, or no expression of pain when clearly injured. Avoiding emotional expression can also be seen as a coping strategy when past inappropriate expression has resulted in aversive consequences. This results in emotional needs not being met (Attwood 2003; Travis and Sigman 1998).

EMOTIONAL RESPONSIVENESS There appears to be a greater deficit in emotional responsiveness as compared to emotional perception in others. Emotional responsiveness is more than the ability to interpret others’ emotions. Once the emotion is identified, one must have some idea of how to respond. ASD people often do not know how to respond to others’ emotions, or they respond inappropriately (Attwood 2003; Travis and Sigman 1998).

Emotional Expression, Identification, and Regulation

179

Teaching social responses to others’ emotions can be facilitated by use of Social Stories™ and Comic Strip Conversations, teaching tools developed by Carol Gray (1994b). These teaching tools visually represent thoughts and hidden intent, facilitating teaching theory of mind thinking and empathic skills, and enable the process of exploring emotional situations (Attwood 1998; Gray 1994b; Kerr and Durkin TM 2004). Social Stories and Comic Strip Conversations are discussed in greater detail in Chapter 6.

Emotional mirroring Some people with ASD who appear to be “emotionally fragile” (Ory 2004), or emotionally volatile, also appear to reflect back the emotions of those around them, sometimes called “emotional mirroring” (Ory 2004). The implication of this is simple but profound. Those who work with someone who tends to emotionally mirror need to monitor and adjust their own emotions, as they will be reflected back to them by the emotionally fragile person on the autism spectrum. The person with ASD will get into whatever emotional state they perceive their caregiver as showing, which may lead to difficulties when they misinterpret the other person’s emotion (Attwood 1998; Ory 2004). It is this author’s professional experience that many people with ASD who are emotional mirrors tend not only to reflect back any negative emotions of the people in their environment, but also to amplify these emotions. People on the autism spectrum have difficulty with emotional regulation, which can often escalate towards anger (Laurent and Rubin 2004; Raymaekers et al. 2004). In this author’s clinical experience, strong emotional mirroring can lead to emotional dysregulation in people who are on the autism spectrum. This can be troublesome in relationships, as a partner’s strong emotions can disinhibit the ASD person’s emotions, which can lead to angry outbursts or withdrawal (Aston 2003).

Emotional coping Emotional coping involves strategies to negate or balance emotions to facilitate coping. Strong negative emotions are reduced or avoided as a way to cope. Emotional coping is most helpful when the situation cannot

180

Counselling People on the Autism Spectrum

be changed. Emotional coping skills are behaviours such as self-distraction, seeking social support, or framing situations in a positive light, which change the experience of the emotion from unmanageable to manageable (Sarafino 2002). These skills must be explicitly taught to people on the autism spectrum, as they will not intuitively know what to do to cope with emotions (Attwood 2003). An essential emotional coping skill is to be able to self-calm (Amerikaner and Summerlin 1982; Hiebert and Malcolm 1988; Malcolm and Hiebert 1986; Singh et al. 2003). The ability to self-calm is a crucial component to treating anxiety (Bellini 2004; Jackson 1983; Koegal et al. 2004; Sofronoff and Attwood 2003; Sofronoff et al. 2005), OCD (Piacentini and Langley 2004; Reaven and Hepburn 2003), and anger management (Kellner and Tutin 1995; Miranda and Presentación 2000). Cognitive behavioural strategies have been shown to have a positive effect on emotional regulation (Burns 1980). People with ASD who internalize their reactions with self-blame may show signs of depression and anxiety, while those that externalize their reactions may develop an intolerant personality, and often have difficulty with anger management. Emotional coping can involve withdrawal into video or computer games, fantasy novels, or a perseverative favourite interest. Escape into fantasy can become a problem, as often the boundary between fantasy and reality is blurry with ASD, and thinking can become delusional. Reality testing and cognitive restructuring need to occur when this happens (Attwood 2003). With this in mind, this author recommends that children and young adults with ASD, especially those with cognitive delays, should not be encouraged to play violent computer or video games, as these may fuel delusional thinking and cognitive distortions, and may teach violent behaviours as problem-solving strategies. There is some evidence that violent games and entertainment may increase violent behaviour (Grossman and DeGaetano 1999). There is no reason to believe that this does not apply to people who are on the autism spectrum, who have more limited coping skills and may not be able to discern that violence is not an acceptable resolution to difficulties when they observe violence modelled as a solution on television, or have used it successfully in video game activities (Attwood 2003). In this writer’s experience, violent games have

Emotional Expression, Identification, and Regulation

181

taught violent solutions to problem situations. In one case this writer was involved with, a young child on the spectrum attacked his parent with a knife. His explanation was that this was how problems were solved in his games. When you kill it, the problem goes away. He was not malicious; he simply modelled what he learned by game playing and transferred that learning to a different situation.

ANGER MANAGEMENT People on the autism spectrum have difficulties with emotional regulation (Laurent and Rubin 2004; Raymaekers et al. 2004), particularly anger control (Moynahan 2003). One of the best-researched areas regarding the use of cognitive behavioural emotional control for people with ASD is anger management (Kellner and Tutin 1995). It is logical that many, if not all, of the interventions and steps that are successful in teaching anger management and regulation should prove to be effective in facilitating the regulation of other emotions as well. Aston (2003) studied people who had a spouse with Asperger’s syndrome. Forty per cent of the Asperger’s men and 75 per cent of the Asperger’s women had been violent towards their partners. The women used more hitting, kicking, and punching, while the men tended towards shoving and restraining. Aston reported that anger is the most common response when a partner with Asperger’s felt that he or she was losing control over a situation: “It is at the point when the AS partner feels that he is losing control that profound and illogical anger might unexpectedly be directed at his partner” (Aston 2003, p.138). This anger is a result of his losing control of his feelings and being unable to cope with the situation. Aggressive people on the autism spectrum often show cognitively distorted thinking and a limited capacity for coming up with several possible alternative solutions (Miranda and Presentación 2000; Sukhodolsky, Kassinove and Gorman 2004). They may misread or misinterpret social cues, or fail to think about the consequences of their actions. Often the cognitive distortions show a bias towards the attribution of hostility in other people’s actions. People on the autism spectrum have difficulty interpreting other people’s emotions, or distinguishing

182

Counselling People on the Autism Spectrum

physical sensations from emotional arousal. Impulse control is also a problem, as many people with ASD tend towards having comorbid attention deficit and attention deficit hyperactivity disorder (ADHD) (Ghaziuddin et al. 1998; Moynahan 2003).

Anger management intervention The initial phase of teaching any emotional management intervention, including anger management, is to show the client how to identify the varying degrees of the emotion. The first step is to teach the internal physiological signs of anger, so that the person can recognize the beginning of the anger escalation continuum. This gives clients their personal cues for when they need to start using anger management, as management of anger is most effective in the beginning stages. As previously discussed, the use of visual supports to show varying degrees of emotions can be useful (Miranda and Presentación 2000; Sofronoff and Attwood 2003; Sofronoff et al. 2005). Teaching emotional recognition may occur over several sessions. Clients may need to be reassured that anger is a normal and natural emotion, but what you do with it can be either acceptable or not. You may need to make a distinction between feeling an emotion, which is always acceptable, and acting upon that feeling, which requires self-control and judgment (Kellner and Tutin 1995). The actions taken are either helpful or not helpful. Anger triggers are identified, and may be ranked regarding the severity of anger response. Once triggers are identified, the cognitions and behaviours associated with the trigger situations can be explored. These can be grouped into helpful thoughts and nonhelpful thoughts, as well as useful and not so useful behaviours. Skill instruction addresses cognitions, physiology, and behaviours (Kellner and Tutin 1995). Cognitive restructuring is taught to address nonhelpful thoughts associated with anger. Coping thoughts such as “I can handle this” (Beck and Fernandez 1998, p.64) can be printed on cue cards as reminders of helpful thoughts. Attwood (2003) discussed that there are inappropriate tools, such as retribution, violence, and suicide, which are not effective in anger management or emotional repair. These need to be recognized and clearly shown as less than helpful. Helpful tools, such as cognitive

Emotional Expression, Identification, and Regulation

183

restructuring, help seeking, and self-calming, are shown to be more useful. Problem-solving approaches are helpful in addressing anger management. Strategies to control the physiological response of anger were relaxation training, deep breathing, and counting to ten before reacting (Kellner and Tutin 1995). Anger management strategies need to be practised both in session, as in role playing, and between sessions in real situations. Having the client see an appropriate resolution to a problem before being asked to role play a situation facilitates learning. It may be helpful to have a cheat sheet of possible questions to ask the actors to determine the situation (Kellner and Tutin 1995; Moynahan 2003; Sofronoff and Attwood 2003).

Visual adaptations An adaptation to teaching anger management involves making lists of triggers, lists of how anger was managed, both successfully and unsuccessfully, and a list of coping strategies. These lists can be taken home as reminders and cues of what to do when anger is identified (Kellner and Tutin 1995). The use of a diary to record daily situations in which anger may have been triggered is helpful. This diary is often referred to as a “hassle log” (Kellner and Tutin 1995). Diaries provide information regarding what social situations require intervention. The hassle log records anger triggers, settings, how the situation was handled, and self-appraisal, including if there was an improvement in skills (Kellner and Tutin 1995; Moynahan 2003). Cue cards can be developed with coping thoughts and helpful anger management strategies to facilitate anger management between sessions (Kellner and Tutin 1995; Miranda and Presentación 2000). A different visual format is a Social Story™. Social Story™ and comic strip formats can provide scripts and strategies for coping with anger trigger situations. These can be reviewed in advance if a specific trigger situation is predictable and reoccurs in the ASD person’s life. One advantage to using Social Stories™ and Comic Strip Conversations is that the other person’s thoughts can be shown, facilitating correction of misunderstood social situations (Attwood 1998; Gray 1994a, 1994b).

184

Counselling People on the Autism Spectrum

Role playing adaptations Moynahan (2003) uses a verbal analogue to Carol Gray’s Comic Strip Conversations (Attwood 1998; Gray 1994b) called “bubble talk” (p.177) to delineate one’s thoughts and internal experience from conversation when role playing in a group setting. Others can request bubble talk at any time to learn more about the person’s thoughts and feelings. This can be adapted in individual therapy, as the counsellor can indicate that they are speaking their thoughts out loud in a similar fashion, clearly indicating what are their thoughts and what are their words spoken aloud. Moynahan (2003) also used the analogy of a “magic remote control” (p.179) to rewind the role play to a point where the insertion of an alternative response can be made, and then the role play is resumed. The remote control gives the observer the ability to move through the role play as desired to make any changes. The use of the remote is cued with an agreed upon signal, such as the word “remote.” It is this author’s clinical experience that people with ASD often cannot piece together parts of a role play to create a new one. With this in mind, this author tends to complete any role-playing exercise with the corrected role play performed intact, from beginning to end. This facilitates learning the appropriate responses required for the target situation.

CHAPTER 9

Some Final Words and Suggestions Working with people on the autism spectrum, their families, partners, and employers can appear to be a daunting task at first. Indeed, this writer would expect that by the time you have finished reading this manual the task may seem insurmountable. There are many factors to consider, especially when autism spectrum disorders may be unfamiliar. Working with people on the autism spectrum may also be fascinating and exciting if approached with an open mind. This author experiences autism spectrum disorders as if they are facets of a different culture, with practices and rules that are unique and interesting. As with working with any group, this author has found that there are some helpful “rules of thumb” that make the process easier. First and foremost, write down anything of consequence or importance, as an aid for yourself, if not as a counselling aid. Practise this so it does not interfere with counselling. Making the process visual will go a long way towards making counselling work for people on the autism spectrum. Use diagrams and doodles to get your message across. This writer has found that the process of making counselling visual enhances the counselling relationship as well as facilitating understanding and growth. Provide tools for the person on the spectrum to write or draw out their meanings, if they desire to do so. Ask the person what might help them get the most out of counselling. Often they can tell you what they need, or at least tell you what doesn’t work for them. Ask them how they best learn and retain information. Tailor what you do to meet these parameters. Try to feel fine with doing

185

186

Counselling People on the Autism Spectrum

something in an unusual way if it helps your client in session, within reason. If your client prefers only to read things in purple ink, get some different coloured pens. If they cannot look at you and talk at the same time, let them look where they need. Sometimes it’s the little things that can make a session manageable for the person with an autism spectrum disorder. This writer had one client who could not focus while the clock was ticking, or when the fluorescent lights were humming. We agreed that he could feel free to move the clock to another room or turn off the lights if they were interfering with his focus whenever he felt he needed to. With a different client who needed to withdraw for a moment to process what was being said, an agreement was made that this writer would look away when asked to do so, and became quiet so as not to distract the client from his processing. This writer’s experience has been that these considerations, which are not usually brought up with other clientele, facilitate the counselling process as well as demonstrate respect of the person with ASD’s special needs. Other considerations are having a small space in the waiting room that is quiet and not crowded, and using soft lighting. Giving clients control over the external noise, such as a radio in the waiting room, can also help them feel more comfortable. Drawing paper and writing implements in the waiting room can help some people wait, as not everyone is an avid reader. Computer magazines are almost a must. Try to keep the counselling goal oriented. This writer has found that setting clear goals and charting progress frequently is not only good practice, but can delineate the process of counselling for the client. Setting out beforehand what the process will be and what can be expected is also helpful. This helps the client to predict what is supposed to happen, as well as giving them benchmarks on where they are in the process. Charting progress can give hope, as well as highlight areas where some work may still need to be done. Do not be surprised if you, as a counsellor or clinician, do the majority of the talking. This author has noted that often the person with an autism spectrum disorder talks little, with many long pauses for processing. Sometimes this author’s sessions seem more like lessons than counselling, as there is a large amount of information sharing going on.

Some Final Words and Suggestions

187

At other times, though, this writer may not be able to get a word in edgewise. Case study: Uncommon common sense This writer has noticed that people on the autism spectrum often do not have what is considered to be common knowledge. Sometimes an issue can be resolved by simply filling in the missing information. Sandra, a young adult with Asperger’s, was complaining about missing a friend that she knew in high school. When asked why she did not talk to her, as she still had her phone number, Sandra said that she did not like her friend’s father. When it was suggested that she ask her friend to meet with her at a coffeeshop, away from her father, Sandra was amazed. “You mean I can see her when her parents are not around?” When it was explained to Sandra that her friend, who was also an adult, could agree to meet her for coffee or lunch without having her parents come along too, Sandra realized that she did not have to avoid old friends simply because she did not like their parents. We also discussed how adults made agreements to social activities, and what it might mean if a friend did not choose to accept Sandra’s invitation. Sandra is not so socially isolated now that she understands that some of the social rules change when you become an adult. Sandra simply did not know what most people would know about adult friendships. These are the kinds of things that people on the autism spectrum do not understand or learn naturally. They need to be explicitly taught. Use language the client understands. Try to get the client to describe to you exactly what his or her words mean. It may be very helpful to get an understanding of how their favourite subject works, such as how computers work, or plumbing. These can provide good illustrations of how things work in real life. Choosing favourite topics as analogies or frameworks to describe things can bring interest into the discussion. It may also help your client bring to session his expert knowledge of how something works, a strength that can help him move towards change.

188

Counselling People on the Autism Spectrum

Last, and perhaps not least, say exactly what you mean, and mean exactly what you say. Be specific in your language. You will get far better results. If you use figures of speech or colloquialisms, explain what they mean. Some of your clients may need this explanation. Working with people who are on the autism spectrum can be exhilarating, as it is never the same day twice. Along with many challenges and unexpected surprises, people on the spectrum can provide some amazing insights as well as some astounding perspectives on life. More than once this author has stopped to wonder at what her clients who have an autism spectrum disorder have taught her about life, honesty, and relationships. And that wondering continues to this day with each novel insight from the autism spectrum.

References Alvarez, A. (1992). Live Company: Psychoanalytic Psychotherapy with Autistic, Borderline, Deprived and Abused Children. New York: Brunner-Routledge. American Psychiatric Association (APA, 1994). Diagnostic and Statistical Manual of Mental Disorders (4th edn). Washington, DC: American Psychiatric Association. Amerikaner, M. and Summerlin, M. L. (1982) Group counseling with learning disabled children: Effects of social skills and relaxation training on self-concept and classroom behavior. Journal of Learning Disabilities, 15(6), 340–343. Aston, M. (2003). Aspergers in Love: Couple Relationships and Family Affairs. Philadelphia, PA: Jessica Kingsley Publishers. Attwood, T. (1998). Asperger’s Syndrome: A Guide for Parents and Professionals. London: Jessica Kingsley Publishers. Attwood, T. (1999, September). The pattern of abilities and development of girls with asperger’s syndrome. Retrieved February 12, 2007, from www.tonyattwood.com. au. Attwood, T. (2003). Frameworks for behavioral interventions. Child and Adolescent Psychiatric Clinics of North America, 12, 65–86. Attwood, T. (2004). Strategies to reduce the bullying of young children with Asperger syndrome. Australian Journal of Early Childhood, 29(3), 15–23. Attwood, T. (2006). The Complete Guide to Asperger’s Syndrome. London: Jessica Kingsley Publishers. Baron-Cohen, S. and Wheelwright, S. (2004). The empathy quotient: An investigation of adults with Asperger syndrome or high functioning autism, and normal sex differences. Journal of Autism and Developmental Disorders, 34(2), 163–175. Baron-Cohen, S., O’Riordan, M., Stone, V., Jones, R. and Plaisted, K. (1999). Recognition of faux pas by normally developing children and children with Asperger syndrome or high-functioning autism. Journal of Autism and Developmental Disorders, 29(5), 408–418. Baron-Cohen, S., Wheelwright, S., Hill, J., Raste, Y. and Plumb, I. (2001). The “reading the mind in the eyes” test revised version: A study with normal adults, and adults with Asperger syndrome or high-functioning autism. Journal of Child Psychology and Psychiatry, 42(2), 241–251. Beaumont, P. (2001, May 13). Adult victims of autism are left on jobs scrapheap: A new report reveals the invisible victims of a common disease that still incurs prejudice. Guardian Unlimited. Retrieved February 12, 2007, from www.faaas.org/ doc.php?25,35,,1396209,faa1396209,,,Index,map.html

189

190

Counselling People on the Autism Spectrum

Beck, A. T. and Weishaar, M. (2000). Cognitive therapy. In R. J. Corsini and D. Wedding (Eds.), Current Psychotherapies (6th ed., pp. 241–272). Itasca, IL: F. E. Peacock. Beck, R. and Fernandez, E. (1998). Cognitive-behavioral therapy in the treatment of anger: A meta-analysis. Cognitive Therapy and Research‚ 22(1)‚ 63–74. Bellini, S. (2004). Social skill deficits and anxiety in high-functioning adolescents with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 19(2), 78–86. Bishop, D. M. and Norbury, C. F. (2005a). Executive functions in children with communication impairments, in relation to autistic symptomatology 1: Generativity. Autism, 9(1), 7–27. Bishop, D. V. and Norbury, C. F. (2005b). Executive functions in children with communication impairments, in relation to autistic symptomatology 2: Response inhibition. Autism 9(1), 29–43. Blaxil, M. F. (2005, January 10). Autism risk factor: Trends in autism prevalence reviewed. Pain and Central Nervous System Week, 29. Retrieved March 2, 2005, from Academic Search Premier database (password protected). Boslaugh, S. (1999). Educational and employment experiences of adults with autism and Asperger’s syndrome. Retrieved February 12, 2007, from www.faaas.org/ doc.php?25,130,1420773,faa1420773,,,Doc,page.html Botsford, A. L. (2000). Integrating end of life care into services for people with an intellectual disability. Social Work in Health Care, 31(1), 35–48. Brambilla, P., Hardan, A., Ucelli di Nemi, S., Perez, J., Soares, J. C. and Barale, F. (2003). Brain anatomy and development in autism: Review of structural MRI studies. Brain Research Bulletin, 61, 557–569. Burns, D. D. (1980). Feeling Good: The New Mood Therapy. New York: Avon Books. Cash, A. B. (1999, September). A profile of gifted individuals with autism: The twice-exceptional learner. Roeper Review, 22(1). Retrieved March 4, 2005, from Academic Search Premier database (password protected). Charlop-Christy, M. H. and Daneshvar, S. (2003). Using video modeling to teach perspective taking to children with autism. Journal of Positive Behavior Interventions, 5(1), 12–21. Charlop-Christy, M. H. and Kelso, S. E. (2003). Teaching children with autism conversational speech using a cuecard/written script program. Education and Treatment of Children, 26(2), 108–127. Charlop-Christy, M. H., Le, L. and Freeman, K. A. (2000). A comparison of video modeling with in vivo modeling for teaching children with autism. Journal of Autism and Developmental Disorders, 30(6), 537–552. Church, C., Alisanski, S. and Amanulla, S. (2000). The social, behavioral, and academic experiences of children with Asperger syndrome. Focus on Autism and Other Developmental Disabilities, 15(1), 12–20.

References

191

Cormier, S. and Nurius, P. S. (2003). Interviewing and Change Strategies for Helpers: Fundamental Skills and Cognitive-Behavioral Interventions (5th ed.). Pacific Grove, CA: Brooks/Cole. Cutler, L. A. (2001). Mental health services for persons with mental retardation: Role of the advanced practice psychiatric nurse. Issues in Mental Health Nursing, 22, 607–620. Dennis, M., Lockyer, L. and Lazenby, A. L. (2000). How high-functioning children with autism understand real and deceptive emotion. Autism, 4(4), 370–381. Elliott, S. N. and Gresham, F. M. (1991). Social Skills Intervention Guide. Circle Pines, MN: American Guidance Service. Evans, K. and Dubowski, J. (1988). Art Therapy with Children on the Autism Spectrum: Beyond Words. London: Jessica Kingsley Publishers. Filipek, P. A., Accardo, P. J., Baranek, G. T., Cook, E. H., Dawson, G., Gordon, B., et al. (1999). The screening and diagnosis of autistic spectrum disorders. Journal of Autism and Developmental Disorders, 29, 439–484. Fombonne, E. (1999). The epidemiology of autism: A review. Psychological Medicine, 29, 769–786. Fombonne, E. (2003). Modern views of autism. Canadian Journal of Psychiatry, 48, 503–505. Friedberg, R. D. (2002). How to do cognitive behavioral therapy with young children. The Brown University Child and Adolescent Behaviour Letter, 18(4), 5–7. Frith, U. (2004). Emanuel Miller lecture: Confusions and controversies about Asperger syndromes. UK Journal of Child Psychology and Psychiatry, 45(4), 672–686. Frith, U. and Happé, F. (1999). Theory of mind and self-consciousness: What is it like to be autistic? Mind and Language, 14(1), 1–22. Fullerton, A. and Coyne, P. (1999). Developing skills and concepts for selfdetermination in young adults with autism. Focus on Autism and Other Developmental Disorders, 14(1), 42–52. Gandy, G. L. (1997). Disability and rational emotive behavior therapy (REBT). In Caring and the Age of Technology: Proceedings of the International Conference on Counseling in the 21st Century (pp.119–123). Beijing, China. (ERIC Document Reproduction Service No. ED 439 329.) García-Villamisar, D., Ross, D. and Wehman, P. (2000). Clinical differential analysis of persons with autism in a work setting: A follow-up study. Journal of Vocational Rehabilitation, 14, 183–185. Gerber, P. J., Price, L. A., Mulligan, R. and Shessel, I. (2004). Beyond transition: A comparison of the employment experiences of American and Canadian adults with LD. Journal of Learning Disabilities, 37(4), 283–291. Gerland, G. (1999). Letter to the editors: Autism and psychodynamic theories. Autism, 3(3), 309–311.

192

Counselling People on the Autism Spectrum

Ghaziuddin, M., Aleissi, N. and Greden, J. F. (1995). Life events and depression in children with pervasive developmental disorders. Journal of Autism and Developmental Disorders, 25(5), 495–502. Ghaziuddin, M., Ghaziuddin, N. and Greden, J. (2002). Depression in persons with autism: Implications for research and clinical care. Journal of Autism and Developmental Disorders, 32(4), 299–306. Ghaziuddin, M., Weidmer-Mikhail, E. and Ghaziuddin, N. (1998). Comorbidity of Asperger syndrome: A preliminary report. Journal of Intellectual Disability Research, 42, 279–283. Gillberg, C. and Billstedt, E. (2000). Autism and Asperger syndrome: Coexistence with other clinical disorders. Acta Psychiatrica Scandinavica, 102, 321–330. Gillott, A. L., Furniss, F. and Walter, A. (2001). Anxiety in high-functioning children with autism. Autism, 5(3), 277–286. Glasman, D., Finlay, W. M. L. and Brock, D. (2004). Becoming a self-therapist: Using cognitive-behavioural therapy for recurrent depression and/or dysthymia after completing therapy. Psychology and Psychotherapy: Theory, Research, and Practice, 77, 335–351. Glenn, E., Bihm, E. M. and Lammers, W. J. (2003). Depression, anxiety, and relevant cognitions in persons with mental retardation. Journal of Autism and Developmental Disorders, 33, 69–76. Grandin, T. (1996). Thinking in Pictures and Other Reports from My Life with Autism. Toronto: First Vintage Books. Grave, J. and Blissette, J. (2004). Is cognitive behavior therapy developmentally appropriate for young children? A critical review of the evidence. Clinical Psychology Review, 24, 399–420. Gray, C. (1994a). Comic Strip Conversations: Colorful, Illustrated Interactions with Students with Autism and Related Disorders. Arlington, TX: Future Horizons. Gray, C. (1994b). The New Social Story Book. Arlington, TX: Future Horizons. Gray, C. (1995). Teaching children with autism to “read” social situations. In K. Quill (Ed.), Teaching Children with Autism: Strategies to Enhance Communication and Socialization (pp.219–242). Toronto: Delmar. Green, G. (1996). Early behavioral intervention for autism: What does research tell us? In C. Maurice (Ed.), Behavioral Intervention for Young Children with Autism: A Manual for Parents and Professionals (pp.29–44). Austin, TX: Pro-Ed. Green, J., Gilchrist, A., Burton, D. and Cox, A. (2000). Social and psychiatric functioning in adolescents with Asperger syndrome compared with conduct disorder. Journal of Autism and Developmental Disorders, 30(4), 279–293. Groden, J. and LeVasseur, P. (1995). Cognitive picture rehearsal: A system to teach self-control. In K. Quill (Ed.), Teaching Children with Autism: Strategies to Enhance Communication and Socialization (pp.105–132). Toronto: Delmar. Groden, J., Diller, A., Bausman, M., Velicer, W., Norman, G. and Cautela, J. (2001). The development of a stress survey schedule for persons with autism and other

References

193

developmental disabilities. Journal of Autism and Developmental Disorders, 31, 207–217. Grossman, D. and DeGaetano, G. (1999). Stop Teaching our Kids to Kill: A Call to Action against TV, Movie, and Video Game Violence. New York: Crown. Gustein, S. and Whitney, T. (2002). Asperger syndrome and the development of social competence. Focus on Autism and Other Developmental Disabilities, 17(3), 161–171. Hala, S., Rasmussen, C. and Henderson, A. M. E. (2005). Three types of source monitoring by children with and without autism: The role of executive function. Journal of Autism and Developmental Disorders, 35(1), 75–89. Happé, F. G. E. (1995). Understanding minds and metaphor: Insights from the study of figurative language in autism. Metaphor and Symbolic Activity, 10(4), 275–295. Hardan, A. and Sahl, R. (1999). Suicidal behavior in children and adolescents with developmental disorders. Research in Developmental Disabilities, 20, 287–296. Hare, D. J. and Paine, C. (1997). Developing cognitive behavioural treatment for people with Asperger’s syndrome. Clinical Psychology Forum, 110, 5–8. Hare, D. J., Jones, J. P. R. and Paine, C. (2000). Approaching reality: The use of personal construct assessment in working with people with Asperger syndrome. Autism, 3(2), 165–176. Harrison, J. and Hare, D. J. (2004). Brief report: Assessment of sensory abnormalities in people with autistic spectrum disorders. Journal of Autism and Developmental Disorders, 34(6), 727–730. Heflin, L. J. and Simpson, R. L. (1998). Interventions for children and youth with autism: Prudent choices in the world of exaggerated claims and empty promises. Part I: Intervention and treatment option review. Focus on Autism and Other Developmental Disorders, 13(4), 194–211. Henley, D. (2001). Annihilation anxiety and fantasy in the art of children with Asperger’s syndrome and others on the autistic spectrum. American Journal of Art Therapy, 39, 113–131. Herrey, E. A., Capps, L. M., Keltner, D. and Kring, A. M. (2005). Understanding teasing: Lessons from children with autism. Journal of Abnormal Child Psychology, 33(1), 55–69. Hiebert, B. and Malcolm, D. (1988). Cognitive strategies for mentally handicapped clients. In B. O’Byrne (Ed.), Natcon-14 (pp.289–298). Toronto: Ontario College Counsellor’s Association. (Reprinted in Resources in Education, June 1989. ERIC Document Reproduction Service No. ED 302 800.) Hill, E., Berthoz, S. and Frith, U. (2004). Brief report: Cognitive processing of own emotions in individuals with autistic spectrum disorder and in their relatives. Journal of Autism and Developmental Disorders, 34(2), 229–235. Hodgdon, L. Q. (1995). Solving social-behavioral problems through the use of visually supported communication. In K. Quill (Ed.), Teaching Children with Autism: Strategies to Enhance Communication and Socialization (pp.265–285). Toronto: Delmar. Howlin, P. (2000). Outcome in adult life for more able individuals with autism or Asperger syndrome. Autism, 4(1), 63–83.

194

Counselling People on the Autism Spectrum

Huitt, W. and Hummel, J. (2003). Piaget’s theory of cognitive development. Educational Psychology Interactive. Retrieved February 12, 2007, from http://chiron.valdosta.edu/ whuitt/col/cogsys/piaget.html Hurlbutt, K. and Chalmers, L. (2004). Employment and adults with Asperger syndrome. Focus on Autism and Other Developmental Disabilities, 19(4), 215–222. Jackson, H. J. (1983). Current trends in the treatment of phobias in autistic and mentally retarded persons. Australia and New Zealand Journal of Developmental Disabilities, 9(4), 191–208. Jacobsen, P. (2003). Asperger Syndrome and Psychotherapy. New York: Jessica Kingsley Publishers. Jacobsen, P. (2004). A brief overview of the principles of psychotherapy with Asperger’s syndrome. Clinical Child Psychology and Psychiatry, 9(4), 567–578. Janzen, J. E. (1996). Understanding the Nature of Autism: A Practical Guide. San Antonio, TX: Therapy Skill Builders. Jones, R. S. P. and Meldal, T. O. (2001). Social relationships and Asperger’s syndrome: A qualitative analysis of first-hand accounts. Journal of Learning Disabilities, 5(1), 35–41. Jones, R. S. P., Quigney, C. and Huws, J. C. (2003). First-hand accounts of sensory perceptual experiences in autism: A qualitative analysis. Journal of Intellectual and Developmental Disability, 28(2), 112–121. Jones, R. S. P., Zahl, A. and Huws, J. C. (2001). First-hand accounts of emotional experiences in autism: A qualitative analysis. Disability and Society, 16, 393–401. Kabat-Zinn, J. (1990). The power of breathing: Your unexpected ally in the healing process. In Full Catastrophe Living: Using the Wisdom of your Body and Mind (pp.47–58). New York: Delacort Press. Kellner, M. and Tutin, J. (1995). A school-based anger management program for developmentally and emotionally disabled high school students. Adolescence, 30(120). Retrieved October 4, 2004, from Academic Search Premier database (password protected). Kendall, P. C. and Choudhury, M. S. (2003). Children and adolescents in cognitive-behavioral therapy: Some past efforts and current advances, and the challenges in our future. Cognitive Therapy and Research, 27(1), 89–104. Kerr, S. and Durkin, K. (2004). Understanding of thought bubbles as mental representations in children with autism: Implications for theory of mind. Journal of Autism and Developmental Disorders, 34(6), 637–648. Koegal, R. L., Koegal, L. K. and McNerney, E. (2001). Pivotal areas in intervention for autism. Journal of Clinical Child Psychology, 30(1), 19–32. Koegal, R. L., Openden, D. and Koegal, L. K. (2004). A systematic desensitization paradigm to treat hypersensitivity to auditory stimuli in children with autism in family contexts. Research and Practice for Persons with Severe Disabilities, 29(2), 122–134. Koller, R. (2000). Sexuality and adolescents with autism. Sexuality and Disability, 18(2), 125–135.

References

195

Lainhart, J. E. (1999). Psychiatric problems in individuals with autism, their parents and siblings. International Review of Psychiatry, 11, 278–298. Landry, R. and Bryson, S. E. (2004). Impaired disengagement of attention in young children with autism. Journal of Child Psychology and Psychiatry, 45(6), 1115–1122. Larkin, M. (1997). Approaches to amelioration of autism in adulthood. Lancet, 349 (9046). Retrieved October 4, 2004, from Academic Search Premier database (password protected). Laurent, A. C. and Rubin, E. (2004). Challenges in emotional regulation in Asperger syndrome and high-functioning autism. Topics in Language Disorders, 24(4), 286–297. Lawson, J., Baron-Cohen, S. and Wheelwright, S. (2004, June). Empathising and systemising in adults with and without Asperger syndrome. Journal of Autism and Developmental Disorders, 34(3), 301–310. Leudar, I., Costall, A. and Francis, D. (2004). Theory of mind a critical assessment. Theory and Psychology, 14(5), 571–578. Lovett, H. (1997). Learning to Listen. Baltimore, MA: Paul H. Brookes. Maiello, S. (2001). Prenatal trauma and autism. Journal of Child Psychotherapy, 27, 107–124. Malcolm, D. and Hiebert, B. (1986). Cognitive stress-inoculation training for anger outbursts with a 30 year old mentally retarded residential patient: A case study. British Columbia Journal of Special Education, 10, 139–146. Manassis, K., Avery, D., Butalia, S. and Mendlowitz, S. (2004). Cognitive-behavioral therapy with childhood anxiety disorders: Functioning in adolescence. Depression and Anxiety, 19, 209–216. Marks, S. U., Schrader, C., Levine, M., Hagie, C., Longaker, T., Morales, M., et al. (1999). Social skills for social ills: Supporting the social skills development of adolescents with Asperger’s syndrome. Teaching Exceptional Children, 32(2), 56–61. Martin, I. and McDonald, S. (2004). An exploration of causes of non-literal language problems in individuals with Asperger syndrome. Journal of Autism and Developmental Disorders, 34(3), 311–328. Maurice, C. (1996). Why this manual? In C. Maurice (Ed.), Behavioral Intervention for Young Children with Autism: A Manual for Parents and Professionals (pp.3–12). Austin, TX: Pro-Ed. McLellan, J. and Werry, J. S. (2003). Evidence-based treatments in child and adolescent psychiatry: An inventory. Adolescent Psychiatry, 42(12), 1388–1400. Meyer, R. N. (1999). Counseling AS adults – It’s All in the Process. Retrieved February 12, 2007, from http://rogermeyer.com/counseling_articles_counselling_as_adults.html. Millward, C., Powell, S., Messer, D. and Jordan, R. (2000). Recall for self and other in autism: Children’s memory for events experienced by themselves and their peers. Journal of Autism and Developmental Disorders, 30(1), 15–28. Miranda, A. and Presentación, M. J. (2000). Efficacy of cognitive-behavioral therapy in the treatment of children with ADHD, with and without aggressiveness. Psychology in the Schools, 37(2), 169–182.

196

Counselling People on the Autism Spectrum

Molen, J. (Producer) and Levinson, B. (Director). (1988). Rainman [Motion Picture]. United States: MGM. Moore, D., McGrath, P. and Thorpe, J. (2000). Computer-aided learning for people with autism: A framework for research and development. Innovations in Education and Training International, 37(3), 218–228. Mostofsky, S. H., Goldberg, M. C., Landa, R. J. and Denckla, M. B. (2000). Evidence for a deficit in procedural learning in children and adolescents with autism: Implications for cerebellar contribution. Journal of the International Neuropsychological Society, 6, 752–759. Moynahan, L. (2003). Enhanced aggression replacement training with children and youth with autism spectrum disorder. Reclaiming Children and Youth, 12(3), 174–180. Müller, E., Schuler, A., Burton, B. and Yates, G. B. (2003). Meeting the vocational support needs of individuals with Asperger Syndrome and other autism spectrum disabilities. Journal of Vocational Rehabilitation, 18, 163–175. Muller, R. A., Behen, M. E., Rothermal, R. D., Chugani, D. C., Muzik, O., Mangner, T. J., et al. (1999). Brain mapping of language and auditory perception in high-functioning autistic adults: A PET study. Journal of Autism and Developmental Disorders, 29(1), 19–31. Müller, R. A., Cauich, C., Rubio, M. A., Mizuno, A. and Courchesne, E. (2004). Abnormal activity patterns in premotor cortex during sequence learning in autistic patients. Biological Psychiatry, 56, 323–332. Mullins, J. L. and Christian, L. A. (2001). The effects of progressive relaxation training on the disruptive behavior of a boy with autism. Research in Developmental Disabilities, 22, 449–462. Nesbitt, S. (2000). Why and why not? Factors influencing employment for individuals with Asperger syndrome. Autism, 4(4), 357–369. Newman, M. G., Consoli, A. J. and Taylor, C. B. (1999). A palmtop computer program for the treatment of generalized anxiety disorder. Behavior Modification, 23(4), 597–619. Newman, M. G., Kenardy, J., Herman, S. and Taylor, C. B. (1997). Brief reports: Comparison of palmtop-computer-assisted brief cognitive-behavioral treatment to cognitive-behavioral treatment for panic disorder. Journal of Consulting and Clinical Psychology, 65(1), 178–183. Nikopoulos, C. K. and Keenan, M. (2003). Promoting social initiation in children with autism using video modeling. Behavioral Interventions, 18, 87–108. Noens, I. and van Berckelaer-Onnes, I. (2004). Making sense in a fragmentary world: Communication in people with autism and learning disability. Autism, 8(2), 197–218. Noens, I. L. J. and van Berckelaer-Onnes, I. A. (2005). Captured by details: Sense-making, language and communication in autism. Journal of Communication Disorders, 38, 123–141.

References

197

Ochs, E., Kremer-Sadlik, T., Sirota, K. G. and Solomon, O. (2004). Autism and the social world: An anthropological perspective. Discourse Studies, 6(2), 147–183. Ogletree, B. T. and Fischer, M. A. (1995). An innovative language treatment for a child with high-functioning autism. Focus on Autistic Behavior, 10(3). Retrieved January 2, 2004, from Academic Search Premier database (password protected). O’Neill, M. and Jones, R. S. (1997). Sensory-perceptual abnormalities in autism: A case for more research? Journal of Autism and Developmental Disorders, 27(3), 283–293. Orsmond, G. I., Krauss, M. and Seltzer, M. M. (2004). Peer relationships and social and recreational activities among adolescents and adults with autism. Journal of Autism and Developmental Disorders, 34(3), 245–256. Ory, N. (1995). Working with People with Challenging Behaviors: A Guide for Educators and Caregivers. Victoria, British Columbia, Canada: Challenging Behavior Analysis and Consultation. Ory, N. (2002a). Overcoming resistive behaviour, letting it be their idea! Retrieved June 2, 2003, from http://autismtoday.com/articles/Overcoming_Resistive_Behavior.asp? name=Nathan%20Ory Ory, N. (2002b, October 5). Supporting children and adults with persistent, repetitive behaviours: Having trouble with transitions, and autistic thinking and autistic logic: How to use this as an asset for coping and problem solving. Paper presented at the Island Mental Health Support Team and Vancouver Island Health Authority Autism Workshop, Victoria, BC, Canada. Ory, N. (2003). How to explain “black and white” thinking to a person who only thinks in “black and white”. Retrieved January 4, 2004, from http://autismtoday.com/articles/ black_and_white.asp?name=Nathan%20Ory Ory, N. (2004). Brief guidelines for caregivers supporting persons who are emotionally fragile. Retrieved June 28, 2004, from http://autismtoday.com/articles/brief_guidelines.asp? name=Nathan%20Ory Øyane, N. M. F. and Bjorvatn, B. (2005). Sleep disturbances in adolescents and young adults with autism and Asperger syndrome. Autism, 9(1), 83–94. Palmen, S. J. M. C. and van Engeland, H. (2004). Review on structural neuroimaging findings in autism. Journal of Neural Transmission 111, 903–929. Park, C. L. and Folkman, S. (1997). Meaning in the context of stress and coping. Review of General Psychology, 1(2), 115–144. Parsons, S., Mitchell, P. and Leonard, A. (2004). The use and understanding of virtual environments by adolescents with autistic spectrum disorders. Journal of Autism and Developmental Disorders, 34(4), 449–466. Perlman, L. (2000). Adults with Asperger disorder misdiagnosed as schizophrenic. Professional Psychology: Research and Practice, 31(2), 221–225. Piacentini, J. and Langley, A. K. (2004). Cognitive-behavioral therapy for children who have obsessive-compulsive disorder. JCLP/In Session, 60(11), 1181–1194. Ponnet, K., Roeyers, H., Buysse, A., DeClercq, A. and van Derheyden, E. (2004). Advanced mind-reading in adults with Asperger syndrome. Autism, 8(3), 249–266.

198

Counselling People on the Autism Spectrum

Portway, S. and Johnson, B. (2003). Asperger syndrome and the children who “don’t quite fit in.” Early Child Development and Care, 173(4), 435–443. Prado de Oliveira, L. E. (1999). Little Jeremy’s struggle with autism, schizophrenia and paranoia. International Forum of Psychoanalysis, 8, 172–188. Prestwood, S. (1999). The Sheffield counselling service for people with autism and Asperger syndrome. Retrieved November 30, 1999, from http://trainland.tripod.com/ sueprestwood.htm Proctor, H. G. (2001). Personal construct psychology and autism. Journal of Constructivist Psychology, 14, 107–126. Quill, K. (1995). Introduction. In K. Quill (Ed.), Teaching Children with Autism: Strategies to Enhance Communication and Socialization (pp.1–8). Toronto: Delmar. Quinn, C. and Swaggart, B. L. (1994). Implementing cognitive behaviour management programs for persons with autism: Guidelines for practitioners. Focus on Autistic Behavior, 9(4), 1–14. Raja, M. and Azzoni, A. (2001). Asperger’s disorder in the emergency psychiatric setting. General Hospital Psychiatry, 23, 285–293. Raymaekers, R., van der Meere, J. and Roers, H. (2004). Event-rate manipulation and its effect on arousal modulation and response inhibition in adults with high-functioning autism. Journal of Clinical and Experimental Neuropsychology, 26(1), 74–82. Reaven, J. and Hepburn, S. (2003). Cognitive-behavioral treatment of obsessivecompulsive disorder in a child with Asperger syndrome: A case report. Autism, 7(2), 145–164. Renna, R. (2004). Autism spectrum disorders: Learning to listen as we shape behaviors blending choice theory with applied behavioral analysis. International Journal of Reality Therapy, 23(2), 17–22. Rodebaugh, T. L., Holaway, R. M. and Heimberg, R. G. (2004). The treatment of social anxiety disorder. Clinical Psychology Review, 24, 883–908. Roe, K. (1999). Asperger syndrome and terror. Focus on Autism and Other Developmental Disabilities, 14, 252–253. Rogers, S. (1998a). Empirically supported comprehensive treatments for young children with autism. Journal of Clinical Child Psychology, 27(2), 168–179. Rogers, S. (1998b). Neuropsychology of autism in young children and its implications for early intervention. Mental Retardation and Developmental Disabilities Research Reviews, 4, 104–112. Ruberman, L. (2002). Psychotherapy of children with pervasive developmental disorders. American Journal of Psychotherapy, 56, 262–273. Ruble, L. A. and Dalrymple, N. J. (1996). An alternative view of outcome in autism. Focus on Autism and Other Developmental Disabilities, 11(1). Retrieved October 4, 2004, from Academic Search Premier database (password protected).

References

199

Russell, J. and Jarrold, C. (1998). Error-correction problems and autism: Evidence for a monitoring impairment? Journal of Autism and Developmental Disorders, 28(3), 177–188. Rutherford, M. D., Baron-Cohen, S. and Wheelwright, S. (2002). Reading the mind in the voice: A study with normal adults and adults with Asperger syndrome and high functioning autism. Journal of Autism and Developmental Disorders, 32(3), 461–469. Rutter, M. (2005). Aetiology of autism: Findings and questions. Journal of Intellectual Disability Research, 49(4), 231–238. Sainsbury, C. and Gerland, G. (1999). Open exchange: An autistic perspective on Live Company. Journal of Child Psychotherapy, 25, 153–161. Samuels, C. A. (2005, February 23). GAO: Big jump in children with autism seen, Education Week, 24(24). Retrieved March 4, 2005, from Academic Search Premier database (password protected). Sansosti, F. J., Powell-Smith, K. A. and Kincaid, D. (2004). A research synthesis of social story interventions for children with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 19(4), 194–204. Sarafino, E. P. (2002). Health Psychology: Biopsychosocial Interactions (4th ed.). Hoboken, NJ: Wiley. Schultz, R. T. (2005). Developmental deficits in social perception in autism: The role of the amygdala and fusiform face area. International Journal of Developmental Neuroscience, 23, 125–141. Seltzer, M. M., Shattuck, P., Abbeduto, L. and Greenberg, J. S. (2004). Trajectory of development in adolescents and adults with autism. Mental Retardation and Developmental Disabilities Research Reviews, 10, 234–247. Shuttleworth, J. (1999). The suffering of Asperger children and the challenge they present to psychoanalytic thinking. Journal of Child Psychotherapy, 25, 239–265. Singh, N. N., Wahler, R. G., Adkins, A. D. and Meyers, R. E. (2003). Soles of the feet: A mindfulness-based self-control intervention for aggression by an individual with mild mental retardation and mental illness. Research in Developmental Disabilities, 24, 158–169. Smith, T. (1996). Are other treatments effective? In C. Maurice (Ed.), Behavioral Intervention for Young Children with Autism: A Manual for Parents and Professionals (pp.45–59). Austin, TX: Pro-Ed. Smith-Myles, B. and Simpson, R. L. (2001, November). Effective practices for children with Asperger syndrome. Focus on Exceptional Children, 34, 1–14. Sofronoff, K. and Attwood, T. (2003). Cognitive behaviour therapy intervention for anxiety in children with Asperger’s syndrome. Good Autism Practice, 4, 2–8. Sofronoff, K., Attwood, T. and Hinton, S. (2005). A randomised controlled trial of a CBT intervention for anxiety in children with Asperger syndrome. Journal of Child Psychology and Psychiatry, 45, 1–9. Stein, D., Ring, A., Shulman, C., Meir, D., Holan, A., Weizman, A., et al. (2001). Brief report: Children with autism as they grow up – description of adult inpatients with severe autism. Journal of Autism and Developmental Disorders, 31(3), 355–360.

200

Counselling People on the Autism Spectrum

Stoddart, K. P. (1999). Adolescents with Asperger syndrome: Three case studies of individual and family therapy. Autism, 3, 255–271. Sukhodolsky, D. G., Kassinove, H. and Gorman, B. (2004). Cognitive-behavioral therapy for anger in children and adolescents: A meta-analysis. Aggression and Violent Behavior, 9, 247–269. Tani, P., Lindberg, N., Neiminen-von Wendt, T., von Wendt, L., Virkkala, J., Appleberg B., et al. (2004). Sleep in young adults with Asperger syndrome. Biological Psychiatry, 50, 147–152. Teunisse, J. P., Cools, A. R., van Spaendonck, K. P. M., Aerts, F. H. T. M. and Berger, H. J. C. (2001). Cognitive styles in high-functioning adolescents with autistic disorder. Journal of Autism and Developmental Disorders, 31(1), 55–66. Toichi, M., Kamio, Y., Takashi, O., Sakihama, M., Youngstrom, E. A., Findling, R. L., et al. (2002). A lack of self-consciousness in autism. American Journal of Psychiatry, 159, 1422–1424. Travis, L. L. and Sigman, M. (1998). Social deficits and interpersonal relationships in autism. Mental Retardation and Developmental Disabilities Research Reviews, 4, 65–72. Trillingsgaard, A. (1999). The script model in relation to autism. European Child and Adolescent Psychiatry, 8, 45–49. Tsatsanis, K. (2004). Heterogeneity in learning style in Asperger syndrome and high-functioning autism. Topics in Language Disorders, 24(4), 260–270. Wagenaar, J. and La Forge, J. (1994). Stress counselling theory and practice: A cautionary review. Journal of Counseling and Development, 73(1), 23–32. Wilhelm, S., Tolin, D. F. and Steketee, G. (2004). Challenges in treating obsessive-compulsive disorder: Introduction. JCLP/In Session, 60(11), 1127–1132. Willey, L. H. (1999). Pretending to be Normal: Living with Asperger’s Syndrome. London: Jessica Kingsley Publishers. Williams, J. H. G., Whiten, A. and Singh, T. (2004). A systematic review of action imitation in autistic spectrum disorder. Journal of Autism and Developmental Disorders, 34(3), 285–299.

Subject Index Note: page numbers in italics refer to information contained in tables and diagrams.

abstraction 50–1 actions, misattribution of 91 activity schedules 111–12 adaptive skills 23–4 adolescence 105, 149, 150–1 aging, autism and 13, 27–9 alcohol consumption 25 all-or-nothing thinking 78, 81, 90, 103, 177–8 ambivalent attachment 22–3 analogy 31, 62, 118–19, 122, 154–5, 157, 165, 177, 184, 187 anger 172, 174–5, 179 management 180–4 triggers 182, 183 anorexia nervosa 46 anterior cyngulate gyrus 26 antidepressants 106, 112, 133 anxiety, comorbid 14, 16–17, 46, 64, 115–33 assessment 120–1 causes of 115–16 childhood 116–17 diagnosis 116–19 functional 120 normalizing 120 prevalence 115 train analogy of 118–19 transitional 96 treatment 119ù33 see also social anxiety anxiety hierarchies 123, 124, 125–6 anxiety logs 126 art therapy 52–3 Asperger’s syndrome 11, 21, 29 CBT modifications for 78 cognition of 50, 53–4, 59–60 common knowledge deficits 187 comorbid 47, 104–5, 115, 118–19 diagnosis 25, 29, 30, 31

and emotional identification 172 in girls 37 social skills deficits of 139, 152 symptoms of 35–7, 36, 40–1 assessment tools 81–4, 81, 82 attachment 22–3 attention, stuck 63–4 attention deficit hyperactivity disorder (ADHD) 46, 182 attention shifting 32, 63–4, 169 Attributes Activity 31 attributions faulty 91, 112–14, 160–2, 181–2 retraining 91 auditory hypersensitivity 26, 43, 44 autism 16, 21–47 adult outcomes 27–9 aetiology 24–7 and aging 13, 27–9 atypical 38 cognition of 59–60 and comorbidity 45–7 diagnosis 24–5, 27 and emotional identification 172–3 history of 21–4 Kanner-type 29–30, 32, 38, 46, 140 prevalence 27 strengths of 34–5 symptoms of 32–5, 33, 41–2 see also high functioning autism autism spectrum disorders (ASD) 11–17, 16, 21–47 CBT adaptations for 77–102 cognition of 16–17, 49–74 comorbid 45–7, 103–14, 115–36 diagnosis 29–31 guidelines for working with 185–8 prevalence 14 and social skills 137–58

201

symptoms 29, 32–45, 33, 36, 38 avoidance behaviour 45, 119, 123 behavioural approaches 14–15, 23–4 beliefs, mistaken 85 bereavement 28–9 bibliotherapy 79, 155 big picture 65–6 bipolar disorder 46 black and white thinking 74 blaming 59, 90, 91 body language, in-the-moment 174 “book of life” 154–5 brain 25–7 breathing techniques 121–2, 163–4, 169 bubble talk 184 bullying 37, 151 cartooning 108, 132 case studies 13 adapted CBT 78–9, 84, 98 art therapy 52–3 common knowledge deficits 187 comorbid anxiety 118–19, 121–2, 125–31 comorbid depression 104–5, 109–10, 112, 114 coping with change 64 disorganized thoughts 34 emotional issues 172–3, 175–8 faulty logic 73 literal thinking 53–6 organizational deficits 68–9 perseveration 63–4, 67 savant skills 39 self-concept deficits 57–8 self-control issues 70–1 social skills 141–2, 146–7, 158 stress management 161, 162, 169

202

Counselling People on the Autism Spectrum

case studies cont. theory of mind deficits 61–2 central coherence 65–6 cerebellum 26–7 cerebral hemispheres 26, 27 challenging behaviour 53–5 change behavioural 83 difficulties with 28–9, 37, 63–4, 160 learning to accommodate 35, 96–7 checklists 80 choice mapping 93–5, 94, 112, 154 structuring 97–9 clomipramine (Anafril) 133 cognition 16–17, 49, 49–74 attention shifting 63–4 difficulties with change 63–4 empathizing 71–2 executive functioning 65–71 literal thinking 40, 53–6 self-concept 56–9 speaking thoughts aloud 70 systemizing 71–2 theory of mind 59–62 visual thinking 50–3 cognitive behavioural therapy (CBT) 12–13, 24 autism-specific modifications 77–102 for comorbid anxiety 119–33 for comorbid depression 106–12, 113 for comorbid obsessive compulsions 133–4, 136 use of computers in 69 cognitive disputing 85 cognitive distortions 85, 87–91, 181 of comorbid anxiety 119–21 of comorbid depression 107–8, 111 definitions/types of 90 recording 87, 88, 89 cognitive inflexibility 34, 66–7 cognitive reappraisal 162 cognitive restructuring 85–96 for action misattribution 91 for anger management 182–3 chart for 88 and choice mapping 93–5, 94 for comorbid anxiety 118–22 for comorbid depression 107, 108–9

definition 85 goal setting for 95–6 process 85–9, 86, 88, 89 and relapse prevention 95 for social anxiety 117 and special interests 95 visual, concrete tools for 91–5, 92, 94 colloquialisms 40, 53, 188 Comic Strip Conversations 62, 155–6, 176, 179, 183 common knowledge deficits 187 communication difficulties 39–41 comorbidity 45–7 medical conditions 47 mental health conditions 46–7, 103–14, 115–36 mental retardation 14, 27, 32, 39, 46, 85, 103–4 comprehension 40–1 computer analogy 31 computer games, violent 180–1 computers, as teaching aids 69, 157 concrete concepts 50–1, 64 answering anxious questions with 131–2 of CBT 79–81, 91–3, 92, 121–2 concrete operational stage 51 confusion 118, 120 contextual cues 175 control 31 fear of losing 181 locus of 100, 162 conversational turn-taking 153 see also Comic Strip Conversations coping strategies 88–9, 155 emotional 179–81 for sensory abnormalities 45 social 36 corpus callosum 26, 27 crossdressing 58 cue cards 64, 127, 153, 183 danger, sense of 120, 125 data collection 102 dating 105 delinquency 151 delusions 30 denial 30, 31 depression comorbid 14, 16–17, 46, 103–114, 177 diagnosis 103–5 helplessness of 112–14 onset 105 prevalence 103 relapse prevention 113–14 symptoms 104–5 treatment 106–12 reactive 30

desensitization 161 through extinction 123–6 through reciprocal inhibition 122–3 detail fixation 65–6 diagnosis of autism spectrum disorders 29–31 acceptance 30–1, 108–9 explanation of 31 Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV) 33, 36, 38, 46 diagrams 80, 80 disclosure issues 139–41 disinhibition 159 disorganization 34, 37, 67–9 distraction 110–11, 169 domestic violence 145, 181 Down’s syndrome 63 drug misuse 25 eating disorders 46 echolalia 41 emotion dictionaries 84, 175–6 emotional assessment tools 81–4 see also emotional thermometers emotional impairments 14–16, 42–3, 171–84 of coping skills 179–81 of emotional expression 171, 175–6, 177–8 of emotional identification 152, 171–7 of emotional information processing 152 of emotional mirroring 179 of emotional reasoning 90 of emotional regulation 17, 42–3, 70, 171, 179, 181 of emotional responsiveness 178–81 of emotional stuckness 107 emotional response scales 173–4, 174 emotional thermometers 81, 81, 135, 173–4, 178 empathy 37, 42, 71–2, 173 employment 139–43 epilepsy 47 executive functioning 65–71 attribution of meaning 71 central coherence 65–6 cognitive inflexibility 66–7 organizational deficits 67–9 and problem solving difficulties 99 self-control 70–1 source monitoring 69–70 exposure therapy 117, 123–6, 134, 136 externalization 31, 59, 180

Subject Index facial cues, emotional 172–3 facial recognition 26 fantasy discrimination from reality 35 escape into 30, 104–5, 180–1 fear 120, 122–9, 136 logs 126 triggers 128 fixations 65–6, 148–9 flow charts 93–5, 94, 96 fluoxetine 133 fluvoxamine 133 formal operational stage 51 fortune telling 90 fragile X syndrome 46 friendships 138–9 functional fixity 108 fusiform face gyrus 26 future, thinking about 126 gaze avoidance 45 genetics 25 getting fired 141–2 girls 37 goal setting 95–6, 186 grief 28–9 group therapy 78 guidelines, for working with ASDs 185–8 hand–eye coordination 37 “hassle logs” 183 helplessness 91, 107, 112–14 high functioning autism 29 CBT modifications for 78, 84 cognition of 60–1, 70 and depression 105 diagnosis 24–5, 30 employment 139 symptoms of 32, 42 homosexuality 148 humour 73 hyperarousal 44–5, 138, 159 hypersensitivity 26, 43–4, 186 hyperventilation 121–2 hyposensitivity 44 imitation 30–1, 34, 51–2 impulsivity 70–1 in-the-moment thinking 73–4 infidelity 54, 71, 148 inhibitory functions 70–1 insight 152 Intelligence Quotient (IQ ) 11, 39, 46 intentionality 61 internalization 30, 180 irony 40, 60 irrationality 127–8

jumping to conclusions 90 labelling 90 language acquisition 35–6, 40 expressive 32, 39, 40–1 receptive 32, 39, 40–1 language listening 26 learned helplessness 91, 107 learning rote 35 verbal 26, 50 visual 34–5 lethargy 107, 111–12 limbic system 26 linear scales 135 literal thinking 40, 53–6 logic 49, 71, 72–4, 85 loneliness 139 loophole thinking 55–6, 65 love 143–50 lying 30 magic remote control analogy 184 magnetic resonance imaging (MRI) 25–6 magnification (catastrophizing) 90 marriage 143–50 masturbation 149 meaning 40–1, 175 attribution of 24, 61, 71 hidden 54–5, 60, 66 reattribution 162 and stress 160–2 medical conditions, comorbid 47 medication 15 meditation 169 mental filters 90 mental health conditions, comorbid 46–7, 103–14, 115–36 mental retardation 12 comorbid 14, 27, 32, 39, 46, 85, 103–4 mental states 58–61 mercury 17 metacognition 65 metaphor 95, 119–20, 176 metarepresentation 66 mind blindness 59 mind reading (cognitive distortion) 90 mind reading (mentalizing) 59, 61 mindfulness 126–7, 169 minimization 90 mislabelling 90 MMR (measles, mumps, rubella) 25 mobiles, thoughts, feelings and actions 86, 86

203 mood diaries 84 mood thermometers 109, 110, 111–12 mothers, “refrigerator” 22–3 motor difficulties 26–7, 34, 37 multiple choice questions 83 musical ability 39 National Autistic Society of Great Britain 138 neural pruning 27 neuroleptics 106 neurology 25–7 nonverbal persons 39, 69, 158 notes, written 78–9 object cues 67 object permanence 58 obsessive compulsions 17, 43 obsessive compulsive disorder (OCD), comorbid 46, 115, 133–6 organization 34, 37, 67–9 overgeneralization 90 overqualification 142 paravocals 172–3 parental rejection 22–3 perfectionism 132–3 perseveration 17, 41, 43, 63–4, 67, 133–6, 161 anxious 116, 117 and depression 109–10 and obsessive compulsions 134 pleasurable 116 working with 109–10 personal digital assistants (PDAs) 68–9 personalization 90, 91 pervasive developmental disorders not otherwise specified (PDD-NOS) 11, 21, 29 CBT adaptations for 98 cognition of 59–60, 61–2 comorbid anxiety of 127 diagnosis 29 symptoms 38, 38, 41 phobias 46, 128–9, 161 pica (eating nonedibles) 46 politeness 42 positive, the disqualification of 90 perseveration on 109–10, 110 problem solving 72, 99 problem solving approaches 98–9, 100. 120 for anger management 183 for social situations 154 for stress management 162

204

Counselling People on the Autism Spectrum

progressive muscle relaxation 164–6, 165 proofreading 97–8 psychoanalytic theory 22–3 psychoeducation 135 questions anxious 131–2 multiple choice 83 Rainman (film) 28, 30, 38 rational responses 121 reality testing 136 recall 56–7 reciprocal inhibition 122–3 reframing 35, 108–9, 161 refusals, automatic 98 relapse prevention 95, 113–14 relaxation 122, 159–69 relaxation objects 166 relevant information 34 repetitive behaviours 133–6 response prevention 134, 136 response quality scale 82 restricted interests 43 rigidity 66–7 risk assessment 120, 125, 125 rituals 104, 117, 131, 133, 147–8 role playing 87, 184 rote learning 35 rubella 25 rudeness 42 rules 74, 131, 142–3 see also social rules rumination 161 safety behaviours 123–4 sameness, need for 147–8 savant skills 38–9 schemata, depressive 107, 108 schizophrenia 21 scripts 130, 156 seizures 47 selective serotonin inhibitors (SSRIs) 106, 112, 133 self, anxious/coping 119 self-awareness, lack of 58–9 self-calming 122, 127, 133–4, 180 self-concept, lack of 56–9 self-control 70–1 self-disclosure 95 self-efficacy 46, 112–13, 122, 162 self-esteem 46 self-management 100–1 self-monitoring 100–1, 101, 126 self-stimulation 29, 43, 45 self-talk 101–2, 154, 163 sensory abnormalities 43–5, 159 sensory overload 44–5, 159 sentences 157

sertraline 133 service shortages 13 sexual abuse 52–3, 151 sexuality 148–9 sleep disorders 47 social anxiety 115, 117, 123, 125–6, 137–8 social articles 156 social control 31 social isolation 37 social phobia 46 social rules 41–2, 85, 138, 154–5, 156 social skills 11, 17, 32, 41–2, 137–58 adolescence 149, 150–1 and Asperger’s syndrome 36, 37 employment 139–43 marriage 143–50 masking impairments 31 social skills training 78, 117, 151–8 Social Stories™ 79, 127–9, 136, 155–7, 179, 183 social support 159–60 social withdrawal 45, 104–5, 137, 180 source monitoring 69–70 special interests 95, 135, 187 specificity, need for 55–6, 187–8 stereotypical behaviour 11, 32, 45, 117 stress 159–69 appraisal of 161–2 identification of symptoms 163 management 17, 162–9 stress balls 166 stress inoculation 167–9, 168 stress surveys 83, 160 stress thermometers 163, 167 structure 130–1 suicide 46, 105, 177–8 symbolic thought 52–3 synaesthesia 44 systemizing 71–2 tactile defensiveness 43–4 tantrums 43, 169 task analysis 96 teaching aids 69 teasing 151 telephone calls 125–6 television 35, 51–2 thalidomide 25 theory of mind 59–62, 152 first order 60, 152 second order 60, 152 therapeutic relationship 77–8 thought see cognition thought stopping 110–11, 126–7 thought tallies 109–10, 110

thought viruses 87, 89 thoughts, feelings and actions representations 80, 80, 86, 86 threat perception 161–2 time management 37 Tourette’s syndrome 46 transitions, prompting 96–7 tuberous sclerosis 47 turn-taking 153 twin studies 25 underemployment 142 unlearning, difficulties with 35 vaccinations 25 valproic acid 25 verbal ability 11, 39, 40 verbal learning 26, 50 video camera analogy 62, 154, 155 video modelling 158 videos, instructional 52 violence and computer games 180–1 domestic 145, 181 visual aids 79–81, 84, 185 for anger management 182, 183 for anxiety management 120–2, 124, 127, 128–9 cartooning 108 for cognitive restructuring 86, 86, 87, 91–5, 92, 94 for emotional issues 173–6, 174–5, 178 for obsessive compulsions 134–5, 136 overcoming resistance to 79, 97–8 risk assessment checklist 125, 125 for self-monitoring 100 for social skills instruction 153–4 for stress management 163, 167 for structured choice 97–8 for transitions 96 see also Comic Strip Conversations; Social Stories™ visual schedules 112, 130 visual spatial abilities 34–5 visual thinking 34–5, 50–3, 79–81, 84 visualization 57–8

Author Index Abbeduto, L. 27–8 Adkins, A. D. 111 Aerts, F. H. T. M. 34 Aleissi, N. 104 Alisanski, S. 137 Alvarez, A. 23 Amanulla, S. 137 American Psychiatric Association (APA) 11, 14, 29, 32, 46, 171 Amerikaner, M. 180 Asperger, H. 21–2 Aston, M. 11, 13–15, 21, 24–5, 29, 35, 36, 42, 51–2, 54, 58, 67, 71, 78–9, 83, 91, 107, 111–12, 118, 130, 137, 140, 144–50, 160, 171–2, 179, 181 Attwood, T. 12–16, 21, 24–5, 29–32, 37, 40–2, 44–6, 50, 59, 66–8, 70, 73–4, 77–8, 81, 83–5, 87–8, 91, 93, 95–6, 101, 103–8, 111–12, 115, 117–22, 124–8, 130, 132, 134, 136–9, 144–5, 147–8, 150–7, 159–60, 163, 166, 171, 174–80, 182–4 Avery, D. 117 Azzoni, A. 46

Brambilla, P. 26 Brock, D. 106 Bryson, S. E. 63 Burns, D. D. 87, 90, 102, 106, 109, 111, 119, 180 Burton, B. 140 Burton, D. 139 Butalia, S. 117 Buysse, A. 152

Baron-Cohen, S. 42, 71–2, 88, 91, 93, 99, 153, 154, 155, 172 Beaumont, P. 139 Beck, A. T. 106, 182 Bellini, S. 180 Berger, H. 34 Berthoz, S. 42 Bettelheim, B. 22 Bihm, E. M. 103 Billstedt, E. 29, 46, 47 Bishop, D. V. 70 Bjorvatn, B. 47 Blaxil, M. F. 27 Bleuler, E. 21 Blissette, J. 85, 95 Boslaugh, S. 142, 143 Botsford, A. L. 28, 29

Dalrymple, N. J. 11, 13, 27, 28 Daneshvar, S. 52, 158 DeClercq, A. 152 DeGaetano, G. 180 Denckla, M. B. 26 Dennis, M. 173 Dubowski, J. 52 Durkin, K. 62, 91, 155, 179

Capps, L. M. 151 Cash, A. B. 29, 38, 42, 44 Cauich, C. 26–7 Chalmers, L. 96, 103, 115, 130, 139, 140, 141, 142, 143 Charlop-Christy, M. H. 52, 153, 158 Choudhury, M. S. 116 Christian, L. A. 159, 166 Church, C. 137 Consoli, A. J. 69 Cools, A. R. 34 Cormier, S. 87–8, 91, 96, 100, 103, 107–9, 119, 122–7, 136, 164, 166–7, 169 Costall, A. 59 Courchesne, E. 26–7 Cox, A. 139 Coyne, P. 79, 100 Cutler, L. A. 14, 79

Elliott, S. N. 115, 137, 171 Evans, K. 52 Fernandez, E. 182 Filipek, P. A. 11, 27, 29, 30, 32, 38, 137 Finlay, W. M. L. 106

205

Fischer, M. A. 40, 53 Folkman, S. 160, 161, 162 Fombonne, E. 14, 21, 22, 23, 27, 32, 38 Francis, D. 59 Freeman, K. A. 158 Friedberg, R. D. 92–3, 118 Frith, U. 35, 36, 40, 42, 50, 51, 57, 58–9, 60, 87, 128 Fullerton, A. 79, 100 Furniss, F. 116 Gandy, G. L. 85, 89, 107, 109, 110 García-Villamisar, D. 139 Gerber, P. J. 139–40, 141 Gerland, G. 23 Ghaziuddin, M. 14, 16, 23, 46, 103, 104, 105, 106, 111, 116, 177, 182 Ghaziuddin, N. 14, 23 Gilchrist, A. 139 Gillberg, C. 29, 46, 47 Gillott, A. L. 116, 117, 159 Glasman, D. 106, 107, 111, 113 Glenn, E. 103, 159 Goldberg, M. C. 26 Gorman, B. 181 Grandin, T. 21, 30, 35, 43, 44, 45, 50–1, 52, 72, 87, 128, 142, 160 Grave, J. 85, 95 Gray, C. 62, 79, 108, 127, 134, 153, 155, 157, 176, 179, 183, 184 Greden, J. 23 Greden, J. F. 104 Green, G. 13, 14, 23, 24 Green, J. 139, 151, 152 Greenberg, J. S. 27–8 Gresham, F. M. 115, 137, 171 Groden, J. 83, 92, 159, 160 Grossman, D. 180 Gustein, S. 104, 137, 138, 143, 159, 171 Hala, S. 70 Happé, F. 35, 50, 51, 57, 58–9, 60, 87, 128

206

Counselling People on the Autism Spectrum

Happé, F. G. E. 32, 40, 53, 118 Hardan, A. 46, 177 Hare, D. J. 14, 15, 44, 45, 46, 77, 78, 82, 124, 135, 174 Harrison, J. 44, 45 Heflin, L. J. 12, 24 Heimberg, R. G. 117 Henderson, A. M. E. 70 Henley, D. 22, 23 Hepburn, S. 116, 133, 134, 135, 136, 180 Herman, S. 69 Herrey, E. A. 151 Hiebert, B. 163, 167, 180 Hill, E. 42, 59, 160 Hill, J. 172 Hinton, S. 37 Hodgdon, L. Q. 154 Holaway, R. M. 117 Howlin, P. 27, 28 Huitt, W. 51 Hummel, J. 51 Hurlbutt, K. 96, 103, 115, 130, 139, 140, 141, 142, 143 Huws, J. C. 16, 44 Jackson, H. J. 122, 123, 128, 180 Jacobsen, P. 14–16, 21–3, 49, 59, 61–3, 72, 95, 124 Janzen, J. E. 21, 23, 25, 29, 32, 34, 41, 45, 113, 120 Jarrold, C. 66 Johnson, B. 36, 37, 42, 81, 85, 103, 104, 177 Jones, J. P. R. 46 Jones, R. 153 Jones, R. S. 44, 159 Jones, R. S. P. 16, 42, 44, 45, 138, 143, 144, 159 Jordan, R. 56–7 Kabat-Zinn, J. 164 Kanner, L. 21 Kassinove, H. 181 Keenan, M. 159 Kellner, M. 12, 84, 126, 180, 181, 182, 183 Kelso, S. E. 153 Keltner, D. 151 Kenardy, J. 69 Kendall, P. C. 116 Kerr, S. 62, 91, 155, 179 Kincaid, D. 156 Koegal, L. K. 22, 122 Koegal, R. L. 22, 122, 180 Koller, R. 149, 150 Krauss, M. 104 Kremer-Sadlik, T. 152 Kring, A. M. 151

La Forge, J. 162 Lainhart, J. E. 14, 16, 46, 47, 103, 115 Lammers, W. J. 103 Landa, R. J. 26 Landry, R. 63 Langley, A. K. 120, 134, 135, 136, 180 Larkin, M. 11, 13 Laurent, A. C. 40, 42, 43, 74, 95, 99, 145, 159, 179, 181 Lawson, J. 71–2 Lazenby, A. L. 173 Le, L. 158 Leonard, A. 157 Leudar, I. 59, 60, 160 LeVasseur, P. 92 Levinson, B. 28, 30, 38 Lockyer, L. 173 Lovett, H. 24, 130 Maiello, S. 23 Malcolm, D. 163, 167, 180 Manassis, K. 117, 119, 121 Marks, S. U. 152, 153, 154, 155 Martin, I. 40, 53, 60, 65, 66, 108 Maurice, C. 32 McDonald, S. 40, 53, 60, 65, 66, 108 McGrath, P. 69 McLellan, J. 106, 119 McNerney, E. 22 Meldal, T. O. 138, 143, 144 Mendlowitz, S. 117 Messer, D. 56–7 Meyer, R. N. 14, 15, 40, 41, 85, 95, 116, 124, 144, 158, 171, 174, 177 Meyers, R. E. 111 Millward, C. 56–7 Miranda, A. 99, 165, 180, 181, 182, 183 Mitchell, P. 157 Mizuno, A. 26–7 Molen, J. 28, 30, 38 Moore, D. 69, 157 Mostofsky, S. H. 26 Moynahan, L. 126, 177, 181, 182, 183, 184 Müller, E. 140, 141, 142 Muller, R. A. 26 Müller, R. A. 26–7 Mulligan, R. 139–40 Mullins, J. L. 159, 166 Nesbitt, S. 139, 142, 143 Newman, M. G. 69 Nikopoulos, C. K. 159

Noens, I. 32, 39, 40, 41, 52, 53, 66 Norbury, C. F. 70 Nurius, P. S. 87–8, 91, 96, 100, 103, 107–8, 109, 119, 122–7, 136, 164, 166–7, 169 Ochs, E. 152 Ogletree, B. T. 40, 53 O’Neill, M. 44, 159 Openden, D. 122 O’Riordan, M. 153 Orsmond, G. I. 104, 138, 159 Ory, N. 63, 67, 70, 73, 74, 78, 96, 97, 107, 117, 120, 121, 129, 131, 132, 164, 177, 179 Øyane, N. M. F. 47 Paine, C. 14, 15, 46, 77, 78 Palmen, S. J. M. C. 27 Park, C. L. 160, 161, 162 Parsons, S. 157 Perlman, L. 21, 22, 36, 39, 40, 41, 42, 43, 44, 172, 174 Piacentini, J. 120, 134, 135, 136, 180 Plaisted, K. 153 Plumb, I. 172 Ponnet, K. 152 Portway, S. 36, 37, 42, 81, 85, 103, 104, 177 Powell, S. 56–7 Powell-Smith, K. A. 156 Prado de Oliveira, L. E. 23 Presentación, M. J. 99, 165, 180, 181, 182, 183 Prestwood, S. 14, 85 Price, L. A. 139–40 Proctor, H. G. 93 Quigney, C. 44 Quill, K. 21, 22, 23, 29, 32 Quinn, C. 100, 118 Raja, M. 46 Rasmussen, C. 70 Raste, Y. 172 Raymaekers, R. 44, 74, 138, 145, 159, 179, 181 Reaven, J. 116, 133, 134, 135, 136, 180 Renna, R. 24 Rodebaugh, T. L. 117, 123, 124, 166 Roe, K. 116 Roers, H. 44

Author Index Roeyers, H. 152 Rogers, S. 13, 14, 23, 24, 26 Ross, D. 139 Ruberman, L. 15, 16, 46, 115 Rubin, E. 40, 42, 43, 74, 95, 99, 145, 159, 179, 181 Rubio, M. A. 26–7 Ruble, L. A. 11, 13, 27, 28 Russell, J. 66 Rutherford, M. D. 42, 172 Rutter, M. 13, 24, 25, 27, 47, 137 Sahl, R. 46, 177 Sainsbury, C. 23 Samuels, C. A. 11, 13, 27 Sansosti, F. J. 156, 157 Sarafino, E. P. 113, 136, 159, 162, 163, 164, 166, 167, 180 Schuler, A. 140 Schultz, R. T. 26 Seltzer, M. M. 27–8, 37, 46, 104 Shattuck, P. 27–8 Shessel, I. 139–40 Shuttleworth, J. 15 Sigman, M. 178 Simpson, R. L. 12, 24, 150, 154, 176 Singh, N. N. 111, 127, 166, 169, 180 Singh, T. 34 Sirota, K. G. 152 Smith, T. 13, 14, 15, 22, 23 Smith-Myles, B. 150, 154, 176 Sofronoff, K. 37, 45, 84, 87, 103, 107, 111, 115, 117, 119–24, 126, 130, 133, 152, 159, 163, 180, 182–3 Solomon, O. 152 Stein, D. 28 Steketee, G. 133 Stoddart, K. P. 14 Stone, V. 153 Sukhodolsky, D. G. 181 Summerlin, M. L. 180 Swaggart, B. L. 100, 118 Tani, P. 46, 47 Taylor, C. B. 69 Teunisse, J. P. 34, 65, 66, 108 Thorpe, J. 69 Toichi, M. 56 Tolin, D. F. 133 Travis, L. L. 178 Trillingsgaard, A. 156 Tsatsanis, K. 32, 34, 35, 36, 37, 40, 50, 63, 66, 108, 153 Tutin, J. 12, 84, 126, 180, 181, 182, 183

van Berckelaer-Onnes, I. 32, 39, 40, 41, 52, 53, 66 van der Meere, J. 44 van Derheyden, E. 152 van Engeland, H. 27 van Spaendonck, K. P. M. 34 Wagenaar, J. 162 Wahler, R. G. 111 Walter, A. 116 Wehman, P. 139 Weidmer-Mikhail, E. 14 Weishaar, M. 106 Werry, J. S. 106, 119 Wheelwright, S. 42, 71–2, 88, 91, 93, 99, 172 Whiten, A. 34 Whitney, T. 104, 137, 138, 143, 159, 171 Wilhelm, S. 133 Willey, L. H. 21, 29, 30, 36, 45, 50, 100, 143, 160 Williams, J. H. G. 34 Wing, L. 22 Yates, G. B. 140 Zahl, A. 16

207