Autism and Girls E-Book

Tony Attwood

• Herausgeber: Future Horizons
• Kategorie: Ratgeber
• Sprache: Englisch

Seitenzahl: 337

Veröffentlichungsjahr: 2019

Beschreibung

Winner of the Gold Award in the 2006 ForeWord Book of the Year competition, this groundbreaking revised and updated book describes the unique challenges of women and girls with Autism Syndrome Disorder. In it, you’ll read candid stories written by the indomitable women who have lived them. You’ll also hear from experts who discuss whether “ASD girls” are slipping under the radar, undiagnosed; practical solutions school systems can implement for girls; social tips for teenage girls, navigating puberty, the transition to work or university, and the importance of careers.

Leseprobe

AUTISM and GIRLS

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721 W. Abram StreetArlington, TX 76013800-489-0727817-277-0727817-277-2270 (fax)E-mail: [email protected]

© 2019 Future Horizons, Inc.All rights reserved.Printed in USA.

No part of this product may be reproduced in any manner whatsoever without written permission of Future Horizons, Inc., except in the case of brief quotations embodied in reviews or unless noted within the book.

ISBN: 9781941765234

eBook Designed by Acepub

CONTENTS

Foreword by Anita Lesko, BSN, RN, MS, CRNA

Adaptations to Autism

Tony Attwood & Michelle Garnett

The Introvert

The “Intrusive” Extrovert

The “Camouflaging” Extrovert

The Developmental Profile of Girls and Women with Autism

The Stages in Camouflaging Autism

Consequences of Camouflaging

Diagnostic Instruments

Psychological Effects of Camouflaging

References

Deep Self-Advocacy: Communicating What’s True When ItCan’t Be Spoken

Catherine Faherty

Asking for Help

Professionals May Unintentionally Prevent Self-Advocacy

A Word About “Compliance Training”

Another Approach is Needed

Communication Forms

Communication Forms Addressing Possible Negligence, Assault, Violence

How Am I Doing?

About Some Things

Introducing the Communication Forms: “How Am I Doing?” and “About Some Things”

Follow-Up Discussion

Silent Conversations by Typing

Being Straightforward and Direct is Essential

Please Share These Communication Forms

Educating the Female Student with Autism

Sheila Wagner, MEd

The Role of Training

Educational Programs for the Female Student with Autism

Academic Modifications and Alternatives for Instruction

Social Skills Assessment and Intervention

Social/Sexual Issues, the School Environment, and Females with Autism

References:

Girl to Girl: Advice on Friendship, Bullying, and Fitting In

Lisa Iland

1. How You See Yourself

2. “Find Your Tribe” — Social Structures

3. Meeting Social Expectations

4. Bullying and Mean Girls

References:

Preparing for Puberty and Beyond

Mary Wrobel, MA CSS/SLP

Understanding Changes During Puberty

Traditional Puberty Instruction

Demonstrating Modesty and Hygiene Skills

Tracking Physical Development

Teaching Physical Growth and Development

Preparing for Menstruation

Teaching Sex Education

Addressing Personal Safety

Anxiety, Depression, and Suicide

Concluding Thoughts

Negotiating the Transition from High School to the GreatBeyond

Teresa Bolick, Ph.D., BCBA-D

Young Women, Parents, and “Home”

Young Women, College, and AS

Young Women, Parents, and Working Partnerships

Young Women, Parents, and Work

Take-Home Tips

Some Helpful Resources

Aspie Dos and Dont’s: Dating, Relationships, and Marriage

Jennifer McIlwee Myers

What the ASD Girl Doesn’t Need

Happiness Is…?

Love Conquers What?

The Suitable Partner

Appearances Count, But How?

Where Is the Love?

What the Autistic Girl DOES Need

Relationships Skills for Autistic Girls

Talk About It

Let’s Talk About Sex (Heaven Help Us)

How I Did It

In Conclusion

Maternal Instincts and Autism

Ruth Snyder, RN

Ten Years Later: An Update for Autism and Girls

For Me, a Good Career Gave Life Meaning,2nd Edition

Temple Grandin, PhD

Temple Tells About Her Experiences

Friends Through Shared Interests

Views on Marriage

Poor Student in High School

Career Makes Life Worthwhile

What is My Identity?

What Gives Life Meaning?

Common Last Names are Careers

Diagnosis is Helpful with Relationships

Looking Back Across the Generations

FOREWORD

by Anita Lesko, BSN, RN, MS, CRNA

Wow. I just took a walk down memory lane. Have you ever found a box of photos you forgot about, and it’s filled with all the photos of your entire life? Memories begin instantly flashing in your mind as you experience the total gamut of emotions: happy, sad, funny, anger, anxiety, love, shame, contentment, pride, embarrassment, inspiration. This is what I have just experienced as I read this book. I am a female with autism, something I didn’t discover until the age of fifty. I saw myself on every page; this work is spot-on about what it’s like experiencing life as a female with autism. Back when I was a child in elementary school, autism spectrum disorders weren’t on teacher’s radars (or anyone’s, for that matter), so I was simply the weird little kid that no one knew what to do with.

I experienced many negative things throughout my school years, and then on in the workplace. Much of that could have been avoided, or at least minimized, had there been a book like this available to teachers, parents, psychologists, employers, and everyone who knows or supports females on the autism spectrum.

There are many more females with autism than previously thought, for reasons you will learn about in this book. There are indeed numerous differences between females and males with autism. You will not only learn exactly what those differences are, but you will also learn how a female adapts herself to the world around her and the subtle signs to look for when a child seems different in some way. Dr. Tony Attwood and Dr. Michelle Garnett not only discuss the adaptations of young females on the autism spectrum, but also those of adults. As they describe, autism may go unnoticed into adulthood because the girl may have camouflaged herself so well that she flew under the radar all those years. The superficial social ability can be effective, but exhausting. A girl’s social acceptance will have been achieved at some psychological cost, often manifesting itself as an anxiety disorder or eating disorder. Her whole “act” is achieved intellectually rather than intuitively like it happens for neurotypicals.

A great discussion follows about the stages of camouflaging autism, compensation, masking, assimilation, and the consequences of these behaviors. There are diagnostic tools to help spot these females, but the tools are only as good as the diagnosticians using them. Attwood and Garnett have developed the Questionnaire of Autism Spectrum Conditions, or Q-ASC, which differentiates the differences between the girls’ and boys’ profile of autism.

Catherine Faherty began her journey in the autism world in the early 1980s. She is a TEACCH-certified advanced consultant and a Carol Gray Social Story™ trainer. She was the first to champion the right of children to learn about their diagnosis. Catherine has learned a very shocking truth, that an overwhelming majority of females with autism have been victimized by frequent or constant bullying and sexual harassment in their adult years. There is widespread sexual harassment, assault, and violence in the lives of autistic women and girls, yet they are least likely to seek help in these situations. You will learn why, and see the significance of this book to help combat this tragic fact. She discusses the very complex aspect of asking for help, which prompted her to develop Communication Forms, a tool to be used for the person who may not be aware that help is available, or even needed.

Sheila Wagner, MEd, a certified special educator in the field of autism for over thirty-five years, discusses why the system fails to diagnose females with autism. She discusses the dire need for special training of school psychologists and teachers, with her extensive list of the problems unique to females with autism. The discussion continues regarding the need for PEER Programming and support, along with academic modifications and alternatives for instruction. Sheila also covers social issues and sexual issues including navigating puberty and the challenges of sex education. The female with autism also has a high level of vulnerability, which parents and teachers must be aware of. Strangers, familiar faces, acquaintances, friends, close friends, life partners—most neurotypicals know the differences between each of these, but people on the spectrum will need to be taught the differences, for many reasons, safety obviously the most critical. Sheila explains it all.

Lisa Iland has a brother on the autism spectrum, Tom. Lisa attended high school along with Tom and recognized the need for those on the autism spectrum to learn about the invisible neurotypical social “rules.” From that experience, she earned her master’s in speech and hearing sciences, became a certified provider of PEERS, and opened a private practice called Social Bridge in Seattle. She helps teens and young adults on the autism spectrum pursue social success, jobs, and life goals. Lisa is also friends with girls on the spectrum and sees their specific needs: from teaching how to socialize, to making friends, dealing with bullying and teasing, online bullying, to becoming self-advocates, Lisa enables these girls to understand the ways of the world and how to navigate life.

Mary Wrobel is a retired teacher and speech-language pathologist who worked with students on the autism spectrum for over twenty-five years. She trains parents and professionals on how to deal with puberty in females on the autism spectrum. Certainly, going through puberty is difficult enough for any female, but for those on the autism spectrum it’s an even greater struggle. Puberty consists of physical, emotional, and mental changes, all of which are compounded in this unique population. Mary prepares parents and teachers for specific things to look for and how to constructively help the ASD girl understand and cope with the unwelcome changes her body is going through. From the need to teach the girl proper hygiene, sex education, and personal safety, Mary has it covered.

In memory of Teresa Bolick, PhD. Teresa was a psychologist and board-certified behavior analyst with a special interest in autism spectrum disorders. She is remembered through her words, gratefully included in this book. Dr. Bolick shared advice for the parents of females with autism on the successful navigation from girlhood to womanhood, leaving home to attend college, and so on. It’s a tough chapter for parents, but a great way to help everyone involved in this transitional phase of life. Parents of daughters with autism (and even NT daughters!) always feel like they are walking a fine line between allowing the girl to make their own decisions and mistakes yet wanting to protect them from harm. Tips are provided to help parents navigate that fine line.

A female with Asperger’s, Jennifer McIlwee Myers was diagnosed at age thirty-six. She is happily married for twenty-five years to her husband, Gary. From growing up undiagnosed, Jennifer gained a lot of hard-won wisdom about relationships and dating. In her chapter, she shares it all for others to have an easier time in these arenas: the dos and don’ts of dating, relationships, and marriage on the autism spectrum. Jennifer openly shares that relationships and dating can be strange when you are on the autism spectrum. She discusses the unwritten and unstructured “rules” of dating in our society today, and how wrong it is for the female with autism to even think of trying to follow it all. There is the fact that the needs of a female with autism is probably quite different than the rest of society, and how these issues are approached. She notes the need to discuss dating and relationships with the young girl on the spectrum to give them practical sense “before they get swept away in a surge of cultural beliefs and hormones.” Jennifer also sees the need to enlighten girls with autism that romantic love is not necessary to human happiness and it is okay not to feel it. They must be taught that you don’t have it fit the mold of what society projects as the norm. She discusses rejection, how to deal with it, and to not take it personally. She gives advice on how to recognize a suitable partner and how to find one. Advice also is given to parents regarding this area. Of course with these issues comes sex advice, too! Jennifer supplies the knowledge necessary for the girl with autism to create a happy life for herself, with or without a life partner.

Unbeknown to her, Ruth Snyder had been diagnosed with autism as a child, but this was kept secret and tucked away in that proverbial closet of family skeletons. Finally, as an adult, she received her autism diagnosis alongside her sons’. She felt—and still feels—optimistic about her “gift,” approaching each day like a child on Christmas morning, full of anticipation for something exciting to happen. Ruth became a registered nurse in 1991. Her goal was to help improve the lives of others. She learned the hard way of the challenges of being on the autism spectrum because she lacked the typical social fear of being socially inappropriate. Ruth discusses all she has done to raise her two sons well. Despite the negative events throughout her life, she shares how she remains optimistic as a female with autism.

Dr. Temple Grandin is the most famous person in the world with autism. There’s even an HBO movie about her, Temple Grandin. I have the extreme fortune of having Temple as a good friend. She is an international autism superstar, and helps thousands, I’m sure hundreds of thousands, of parents and professionals understand how to help individuals on the autism spectrum. She also designs livestock handling systems and is world-renowned for her ethical treatment of cattle and other livestock animals around the world. Temple is the author of many best-selling books on autism, as well as animal handling systems. In this unique piece, Temple discusses something she typically doesn’t discuss: that “emotional relatedness is not the major motivator in a certain subset of females on the autism spectrum,” herself included. Temple shares with you how her career gave her life meaning.

Temple discusses why she was never interested in dating, and it’s very fascinating. She made up a specific set of rules to follow. She explains the negative experiences she saw other girls going through, which served to influence her thoughts on relationships and marriage. She tells you when she is happiest, what really makes her tick! Temple discusses her great concern that many parents and professionals fail to understand that emotional relatedness is not the major motivator of the lives of a certain subset of individuals on the autism spectrum. She worries about them trying to make these individuals into something they’re not. She also talks about how autism relates to her self-identity. Temple describes a major motivating factor in her twenties was to prove to everyone she’s not stupid. Wow! She sure proved that, and then some! She worries about young people getting focused on their autism diagnosis, and what to do instead, to counteract that.

This is a highly necessary book for all involved with the autism spectrum: parents, educators, psychologists, therapists, and individuals themselves on the spectrum. I wish that when I was a young girl, I would have had the opportunity to read this book. It would have allowed me to see others who have “been there and done that.” I wouldn’t have felt so alone, bewildered in a world I didn’t understand. I wish all my teachers had this to read, then they would have understood me. Men need to read this, too, to see the differences of us females on the spectrum compared to them. Up until recently, children and males have been in the spotlight of autism. We’ve been here all along, and this book now shines a bright light on us females on the autism spectrum. Females with autism have a lot to contribute to this world. Within the pages of this book are the tools to help understand them, nurture them, and help them reach their fullest potential.

— Anita Lesko, BSN, RN, MS, CRNA

Adaptations to Autism

Tony Attwood

Michelle Garnett

Minds and Hearts ClinicBrisbane, Australia

TONY ATTWOOD is a clinical psychologist whose original qualifications were achieved in England and who now lives in Queensland, Australia. He has specialized in autism spectrum disorders since 1975, and achieved a PhD from the University of London in 1984. He currently works in private practice and is adjunct professor at Griffith University Queensland. His book Asperger’s Syndrome: A Guide for Parents and Professionals, published in 1998, became the seminal book on Asperger’s syndrome and his subsequent book, The Complete Guide to Asperger’s Syndrome, published in 2006, has become the primary text book on Asperger’s syndrome. He is the senior consultant at the Minds and Hearts clinic in Brisbane, Australia. His current clinical interests are in developing screening tools and diagnostic procedures for autism and developing and evaluating cognitive behavior therapy programs for children and adults with Asperger’s syndrome. He has contributed to over thirty research publications on autism and authored or joint-authored ten books on autism. Tony has also been invited to be keynote speaker at many international conferences on autism.

MICHELLE GARNETT is a clinical psychologist and founder and director of Minds and Hearts, a clinic for Asperger’s syndrome and autism. She has specialized in autism spectrum conditions for twenty-five years, developing expertise in all expressions of autism across all ages. Michelle created the first screening instrument for Asperger’s syndrome, the Australian Scale for Asperger’s Syndrome (ASAS) in 1993. She obtained a PhD for her research into autism in 2007 from the University of Queensland. She has been invited keynote speaker at many national and international conferences and was a contributor and editor of Spectrum Women: Walking to the Beat of Autism, published in 2018.

Until recently, the gender ratio for autism was estimated as four boys for each girl. However, clinicians are increasingly receiving referrals for diagnostic assessments of girls and women, and a recent research study has established a ratio of two-to-one (Rutherford, McKenzie, & Johnston 2016). Why have we not previously diagnosed the true prevalence of autism in girls and women? The answer is that girls and women have so often successfully camouflaged their autism.

One of the central characteristics of autism is a deficit in social communication and social interaction (American Psychiatric Association 2013). The social and interpersonal aspects of life are a challenge, so how does the person who has autism adapt to these challenges? Clinical experience suggests there are three potential adaptations: the introvert, the “intensive” extrovert, and the “camouflaging” extrovert.

The Introvert

The more easily recognized adaptation is that of the person who could be described as an introvert. The child (and subsequent adult) actively minimizes or avoids social engagement, recognizing that social interaction is indecipherably complex, overwhelming, and stressful. This conspicuous adaptation, therefore, is to choose (where possible) to be alone to accomplish things while not necessarily feeling lonely.

But we are increasingly recognizing those people with autism who are extroverts and highly motivated to socialize. For these people, there are two potential adaptations that facilitate social engagement.

The “Intrusive” Extrovert

The first of these two adaptations is to actively seek social experiences, even though the person may not be able to read all the subtle social signals that regulate and moderate the intensity of social engagement. Due to impaired theory of mind, those who have autism often have difficulties reading the nonverbal communication used in a social interaction. Their social behavior is then perceived as intrusive, intense, and irritating. A metaphor to describe this adaptation to autism is that of a driver who does not see the traffic signals (nonverbal communication) or abide by the traffic code (social conventions). They are unable to accurately read social situations and therefore act inappropriately. While there is considerable motivation for social interaction and making friends, these experiences may nevertheless be ended prematurely by the social partner. The consequence is that the person feels bitterly disappointed that conversations, friendships, and relationships are short-lived, and social popularity remains elusive. Another issue is that once friendship is achieved, the person can become possessive, idealizing their new friend with an intensity that is overwhelming. When the friendship or relationship ends, there can be intense despair and feelings of abandonment, betrayal, and of being misunderstood.

The “Camouflaging” Extrovert

The second adaptation for the person with autism who is an extrovert is to recognize their difficulties in reading nonverbal communication and in making and keeping friends. With this insight, they acquire successful social and interpersonal abilities by keenly observing peers and people in general, analyzing their social behavior, and interpreting and abiding by social rules and conventions, thus effectively camouflaging their social difficulties. The person creates a social “mask.”

This chapter focuses on this third adaptation to autism—camouflaging—which was first recognized as an adaptation to autism by girls and women, but which we now recognize as also occurring with males (Lai et al. 2017). To understand the camouflaging process, it is important to first consider how the social development and abilities of girls and women who have autism may differ from boys and men who have autism.

The Developmental Profile of Girls and Women with Autism

Early Childhood

Clinical experience and parental reports indicate that girls who have autism have greater social motivation and engagement than their male peers. However, a characteristic of the girl with autism when playing with her peers is a tendency to be overly dominant and controlling or to be attracted to other girls with strong personalities who tell her what to do (Ormond et al. 2018). Parents often report that she is indiscriminate and excessive when expressing affection or extremely reticent or uncomfortable expressing affection, even with family members. Parents also describe extreme emotional meltdowns in particular situations, such as having to cope with a change in expectations or in response to specific sensory experiences (e.g., being in a crowded shopping mall). The despair and agitation are intense, and parents are often unable to distract or console the child.

Girls who have autism may decipher and analyze social experiences by replaying social events with doll play. Each doll represents a person and the reenactment helps clarify the social signals, conventions, and script. Girls who have autism can have a remarkable ability to engage in solitary imaginative play, creating imaginary worlds, and having imaginary friends, which provides an opportunity to create and rehearse social scripts. The child’s teacher and parents may notice that she rarely engages with female peers, who she perceives as behaving in an incomprehensible way and following inexplicable social rules. When she is engaged in imaginary social play, there is no criticism or rejection.

In contrast, some girls avidly observe other girls playing and socializing and may copy or “clone” themselves after other girls, “borrowing” their gestures and phrases to achieve the social abilities needed when playing with peers (Ormond et al. 2018). The child may imitate gestures, facial expressions, and phrases, which are reenacted and rehearsed when she is alone. Parents may notice that she is more animated when imitating and engaging with her peers than when engaged with family members.

Early School Years

An adaptation in the early school years for girls who have autism can be a preference for playing with boys, as they are perceived as engaging in simpler and more logical play. She may become known as a tomboy, preferring to look androgynous and enjoying sports and physical, rather than conversational, interactions. She may prefer single, close friendships, a characteristic that may continue throughout her life.

Alternatively, she may try to be included with her female peers by developing an interest in expressing femininity in clothing and color coordination and becoming knowledgeable about the topics of conversation of her peers, such as popular films, television programs, and computer games.

If she is effectively rejected by her peers, she may develop an interest in reading fiction, sometimes at a level in advance of her chronological age. Fiction can often provide insight into people’s thoughts and feelings, which can give the child a better understanding of her peers. If she happens to enjoy the Harry Potter books, she may appreciate the thoughts and feelings of Hermione, who herself expresses many characteristics associated with girls who have autism; for example, all her friends at Hogwarts are male.

The girl may also show a greater interest in socializing with pets and animals rather than with peers. Animals accept you for who you are, do not tease and ridicule you, want to play with you, and are always genuinely pleased to see you.

She may not want her social confusion to be recognized by her teacher and peers, so she becomes very well behaved in class in order to be left alone. She also knows that if she is quiet, no one will notice her. She effectively suppresses her autism. However, when she returns home, she becomes a very different character—a Dr. Jekyll and Mr. Hyde transformation. She is no longer timid and shy, and she may be emotionally volatile, demanding, and angry. Parents frequently experience behavior that would never be expressed at school.

High School Years

The nature of female friendships changes throughout the school years, and the teenage girl who has autism may not understand the innate social “rules” of typical adolescent girls, such that when with female peers, she frequently makes social faux pas (Baldwin & Costley 2016). She may have difficulty understanding and responding to the subtle, nonverbal communication of typical teenage girls, such as eye rolling, shared glances, and giggling (Dean, Harwood, & Kasari 2017).

Adolescent girls who have autism are extremely loyal, kind, and helpful friends. They rarely engage in gossip and are not “bitchy” or mean. These engaging qualities may be recognized by a typical girl, and a friendship may develop between them. The typical teenager can then provide social guidance and prompting and a sense of security, especially from the teasing, bullying, rejection, and humiliation by female peers.

If she has a small group of friends, she may be overly sensitive to conflict between her friends. She may take on the role of peacemaker and be eager to restore emotional harmony. If she belongs to a larger group of friends, she may have difficulty coping with too many opinions, egos, and factions within the group (Vine, Foggo, & Webster 2017).

She may not identify with or enjoy the interests of teenage female peers, such as fashion, makeup, boys, and dating. She may be less able to identify with her peers’ construct of femininity. She may then question her own gender identity (Kanfiszer, Davies, & Collins 2017). By not enjoying the same interests, she is more likely to be ostracised, feel lonely, and be aware of and sensitive to derogatory comments such as “you are weird,” which will affect her developing sense of self.

In contrast, she could become an expert in teenage fashion and know all there is to know about the popular boys. She may be aware of the social scripts of her peers and know what to say. However, if in her early school years she observed and imitated her peers but was still rejected, she may decide to have a paradigm shift in her persona, despising femininity and social and gender conventions. She may identify with marginal groups, deliberately defy social conventions, and engage in risky behavior.

The Adult Years

The teenage girl may have effectively camouflaged her autism. She may have “flown under the radar” and not have been considered for a diagnostic assessment for autism. Every day she has acted out the role of a typical girl, so much so that she should be awarded an Oscar for her performance. She has a superficial sociability that is effective, but exhausting. She also has a lack of social identity, other than being the person that others expect her to be.

This social acceptance and success will have been achieved at some psychological cost. There can be performance anxiety in social situations, as though she has been continually “on stage.” The resulting stress may evolve into an anxiety or eating disorder.

She may be popular and socially successful, but this is achieved intellectually rather than intuitively. Like Cinderella at the ball, she can maintain the pretense for a while, but then becomes totally drained of mental energy and must return home to recover in solitude. The unrelenting mental exhaustion of processing social information and social expectations can lead to depression and even self-harm.

The consequences can be a lack of knowledge of her inner and true self, with some adult women saying, “I don’t know who I am.” This may lead to a lack of self-identity, low self-esteem, and prolonged self-analysis. She recognizes that her friendships and relationships are based on deceit, where she has presented a “false” identity. This increases her feelings of deep inner loneliness. She yearns to find, and be able to be, her authentic self, but is aware that when her true self is revealed, she may be rejected and despised. In this way, camouflaging aspects of autism, while successful in some respects, can contribute to the development of clinical depression.

The Stages in Camouflaging Autism

Research and clinical experience suggest a three-stage model of the camouflaging process (Hull et al. 2017). In the first stage, there is motivation to be successful socially and to develop friendships. The second stage is to acquire the ability to camouflage social confusion, social immaturity, and a delay in social reasoning. This is achieved by masking and compensation strategies. The third stage involves short- and long-term consequences, including delaying a diagnostic assessment, access to appropriate support and understanding, and subsequent mood and psychological disorders.

We now have a questionnaire to explore whether a person engages in camouflaging in social situations (Hull et al. 2019). The Camouflaging Autistic Traits Questionnaire (CAT-Q) was developed from discussing aspects of camouflaging with adults who have autism describing their experiences. Exploratory factor analysis suggests three factors with the questionnaire, namely compensation, masking, and assimilation.

Compensation

This strategy is to learn and imitate body language, facial expressions, and conversational scripts. This knowledge can be achieved by observation of peers, but also by reading fiction or watching soap operas and films to acquire scripts and different personas. The girl may also be interested in studying psychology and may avidly read books on body language and friendship.

An alternative compensation strategy is to prefer the company of males, whose social dynamics are relatively simpler. Boys and men may be more accommodating of someone who is socially clumsy, but who clearly enjoys and is relaxed in their company.

Compensation can also be achieved by developing an interest and talent in science or the arts and becoming an author, artist, musician, singer, or multi-linguist. Social eccentricities are accepted and accommodated due to being valued by peers who recognize and admire a particular talent.

Another compensation strategy is to develop an interest in fictional heroes and superheroes and to have friendships based on shared interests, such as cosplay and Comic-Con, providing defined and recognized roles and camouflage by a costume.

Masking

The person’s intention is to create a neurotypical persona by mimicking others, creating a social mask, and changing their personality (Cook, Ogden, & Winstone 2018; Hull et al. 2017). She plays with personalities. To be successful, this adaptation requires the ability to suppress anxiety, appear relaxed, and to constantly monitor social performance, subsequently reviewing that performance or masquerade when alone. It is also important to appear interested in other people and make appropriate eye contact and empathic gestures and comments. When the person is wearing the mask, it is crucial to ensure others do not perceive their discomfort or that their fluent and successful social abilities are an act.

Some adults have described that when they get dressed for school or work, their clothes become their costumes as they take the social stage. Family members will recognize the development of multiple personas, sometimes even knowing who provided the original persona or script.

Assimilation

The intention of this adaptation is to blend in and to appear normal. This means suppressing aspects of autism, such that autism is invisible. It requires the person to become a chameleon and for a brief while be “cured” of autism. This may improve their opportunities to develop and maintain friendships, relationships, and employment.

Strategies to achieve assimilation can include engaging in part-time schooling and employment to reduce the effects of exhaustion, and having a social network of friends and colleagues who have autism—that is, people who accept and encourage the person’s autism.

Another strategy is to be very brave and determined to socialize, thus eventually acquiring social abilities that were previously elusive. We are increasingly recognizing that in some adults who have autism, there is a delay in achieving social skills rather than an eternal absence. The social puzzle is finally solved.

It helps for the person to have a social guide and mentor who can provide positive feedback and explain social conventions, as well as the cues that determine what someone is thinking and feeling. The social mentor may be a family member or friend, a psychologist or therapist, or someone who has autism (Cook & Garnett 2018). Eventually, the characteristics of autism can become sub-clinical and do not cause clinically significant impairment in social, occupational, or other important areas of current functioning (American Psychiatric Association 2013).

Consequences of Camouflaging

Camouflaging may successfully hide the characteristics of autism. However, there are consequences. First, clinicians need to modify existing diagnostic instruments and create new ones that are standardized on girls and women with autism. Secondly, it is important to recognize that those who do camouflage their autism may be (and often are) vulnerable to subsequent psychological disorders.

Diagnostic Instruments

The primary diagnostic instrument for autism is the Autism Diagnostic Observation Schedule, or ADOS. This instrument has recently been criticized in research studies for not being standardized on sufficient numbers of girls and women who have autism, and not being sensitive to the more subtle characteristics in someone who is able to camouflage their autism (Lai et al. 2011; Langmann et al. 2017). Girls and women with autism are often able to mask their social difficulties during the short observation in a diagnostic assessment. The clinician training in the administration of the diagnostic tool and also the scoring system itself both need to be enhanced in order to recognize camouflaging when it occurs. This is particularly relevant in instances where it is anticipated that the person demonstrates typical complex gestures and facial expressions. It is important to be able to distinguish when these gestures and expressions are stylized imitations gleaned from the observation of peers, rather than authentic, age-appropriate nonverbal communication (Rynkiewicz et al. 2016).

We also need screening instruments specifically designed to identify autism in young girls and teenagers to indicate that a formal diagnostic assessment is warranted. We have developed the Questionnaire of Autism Spectrum Conditions, or Q-ASC (Ormond et al. 2018) to differentiate between the girls’ and boys’ profiles of autism. Research using this questionnaire indicates that females with autism, in comparison to their male peers, have different scores in the domains of:

Gender identity (more of an issue for five- to twelve-year-old children)

Sensory sensitivity

Social masking

Imagination

Imitation

Talent in music and languages

The Q-ASC can also be used during a diagnostic assessment to explore with the child’s parents those characteristics of autism that are associated with camouflaging that are not currently included in standardized tests.

Psychological Effects of Camouflaging

Camouflaging can delay the diagnosis of autism, eliciting comments such as, “You’re too social to have autism.” This will also delay self-understanding and self-acceptance (Bargiela, Steward, & Mandy 2016). A delay in confirming the diagnosis will delay access to appropriate support networks and services for those who have autism.

Research has also confirmed that camouflaging is associated with poorer mental health outcomes and is not associated with wellbeing (Hull et al. 2019). Camouflaging may contribute to high levels of anxiety and the development of clinical depression. When a mood disorder is diagnosed, psychological treatments such as cognitive behavior therapy will need to be modified to accommodate the characteristics of autism (Attwood & Garnett 2016; Gaus 2018; Scarpa, Williams, White, & Attwood 2013).

Psychotherapy needs to focus on the negative consequences of camouflaging, encourage self-acceptance, and facilitate ways to explain the characteristics of autism to friends and colleagues so that others can accommodate and appreciate those characteristics.

References

American Psychiatric Association (2013) Diagnostic and Statistical Manual of Mental Disorders, 5th Edition. Washington, DC: American Psychiatric Association.

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Deep Self-Advocacy:Communicating What’s True When It Can’t Be Spoken

Catherine Faherty

CATHERINE FAHERTY is a TEACCH® Certified Advanced Consultant and a Carol Gray Social Story™ trainer. Faherty’s adventures in the autism community since the early 1980s have spanned classrooms, clinics, job sites, and homes. Her book, Asperger’s…What Does It Mean to Me? was the first to champion the right of children to learn about their diagnosis, providing accessible methods to do so while generously supporting their families, teachers, and therapists with practical strategies. Its later revision, Autism…What Does It Mean To Me? was expanded for older children and teens. Faherty’s Understanding Death and Illness and What They Teach About Life was awarded the Autism Society of America 2009 Book of the Year. Catherine Faherty is nationally and internationally known as an innovative teacher, trainer, consultant, and mentor. Her contributions have significantly impacted the autism community by her teaching and practice of structured teaching, self-knowledge, and self-advocacy.

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