World-renowned experts join those with Asperger’s Syndrome to resolve issues that girls and women face every day!
Featuring Tony Attwood and Temple Grandin, plus 7 more experts
Future Horizons, Inc. • Arlington, Texas
World-renowned experts join those
with Asperger’s Syndrome to resolve issues
that girls and women face every day!
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Cover: Monica Thomas; Interior: Erin Stark
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ISBN for E-Book Version: 978-1-935274-25-4
ISBN for Print Version: 978-1-932565-40-9
Foreword
The Pattern of Abilities and Development of Girls with Asperger’s Syndrome
Tony Attwood, Ph.D.
Asperger’s Syndrome in Women: A Different Set of Challenges?
Catherine Faherty
Educating the Female Student with Asperger’s
Sheila Wagner, M.Ed.
Girl to Girl: Advice on Friendship, Bullying, and Fitting In
Lisa Iland
Preparing for Puberty and Beyond
Mary Wrobel, MA CSS/SLP
The Launch: Negotiating the Transition from High School to the Great Beyond
Teresa Bolick, Ph.D.
Aspie Do’s and Dont’s: Dating, Relationships, and Marriage
Jennifer McIlwee Myers
Maternal Instincts In Asperger’s Syndrome
Ruth Snyder
For Me, a Good Career Gave Life Meaning
Temple Grandin, Ph.D.
As a girl growing up with Asperger’s, I had one thing in common with boys with Asperger’s: I was one of those kids who “just didn’t fit in.” Often, no one knew quite what to do with me or how to react to my eccentricities.
What do you do with a little girl who can’t play dolls with other girls because they don’t do it “right”? I had read many child psychology books, including Dr. Spock’s Baby and Child Care, so I absolutely knew how to play dolls correctly. The other girls just played any old way and weren’t concerned about correct infant care.
And what do you do with a girl who gets into arguments on the playground because the typical girls don’t recognize that Sabrina is the best of Charlie’s Angels? After all, she was the “brainy” one, and smartest is best, right?
Of course, I learned about puberty very logically, hunting through the library for studies on human mating behaviors in various cultures and painstakingly dissecting tampons in my bedroom. Judy Blume was not nearly enough for me!
During the mandatory sixth-grade sex-ed talk, when I “tuned out,” staring at the ceiling, the teacher let it pass, assuming that I was embarrassed by the subject matter. In reality, I refused to listen to the teacher because she had made incorrect statements about embryonic development, and I didn’t want to listen to someone who was obviously ignorant.
I was, to the other girls (and a lot of the teachers), a weirdo whose behavior just couldn’t be explained. Like many women, I would not have been diagnosed with Asperger’s if it weren’t for the diagnosis of a close family member: my brother Jimmy, who has autism. In fact, many girls and women with AS don’t find out about this important neurological difference until that very difference creates a disastrous or near-disastrous situation, finally bringing (hopefully appropriate) professional attention to them.
This book is, among other things, a much-needed and much-deserved nod of recognition to all of us female humans with AS. Heaven knows we deserve it; at last, parents, teachers, and psychologists are becoming aware that we are a unique population with distinct and concrete needs.
In addition to being a small step towards bringing the distaff side of AS into the light, this book also offers much information and support for those who live, work, study, or play with girls with Asperger’s.
Inside, the reader will find such gems as information from Tony Attwood on what we know—and don’t know—about why it is so hard to find the girls with Asperger’s who have been empirically demonstrated to exist.
Catherine Faherty talks about the problems that are unique to women with AS, and how these have been brought out via a unique support-group program at TEACCH.
Sheila Wagner’s contribution is a thoughtful and thorough piece not just on the problems girls with AS experience in school, but also on the necessary scope and breadth of solutions that can save many girls from being shunted aside.
Lisa Iland gives us information from the point of view of a typical teen who not only has a brother with an autism spectrum disorder, but has also made friends with some of her female peers on the spectrum. It is one thing when we with AS decide not to be part of the teen mainstream, but it is quite another to be unable to make one’s own decision to do so or not due to ignorance and confusion.
Mary Wrobel writes about the practical aspects of preparing the young girl with AS for puberty and the issues that arise as girls with AS move into womanhood.
Teresa Bolick gives advice for that tricky time of moving from girlhood to womanhood; parents inclined to be overprotective should read the chapter twice.
Ruth Snyder provides insight as to her life and direction as a woman with AS who was not given the insight and support that she needed until much later than girlhood.
Temple Grandin concludes the book with some words of wisdom on the importance of careers as well as the reasons for her lack of interest in dating.
There is also a chapter of mine in there, about issues pertaining to dating and relationships.
Just as important as the information contained herein is the message: girls with Asperger’s need and deserve to get the support and education they need to be the women they can be, instead of spending their lives struggling invisibly.
We women and girls with AS are here, and we deserve to be recognized, to be supported by our families and each other, and to have lives of our own. I like to say, “We’re here, we’re weird, get used to it!”
Jennifer McIlwee Myers
August 2006
Meet Tony Attwood, Ph.D.
Dr. Attwood is a clinical psychologist who lives and works in Brisbane, Australia. Over the past thirty years, he has worked with thousands of individuals with autism, Asperger’s Syndrome, and Pervasive Developmental Disorder. His patients have ranged in age from infants to octogenarians, from profoundly disabled persons to university professors. He presents workshops and training courses for parents, professionals, and individuals with autism throughout the world.
His books and DVDs on Asperger’s Syndrome and High-Functioning Autism are recognized as the best offerings in the field. His book, Asperger’s Syndrome: A Guide for Parents and Professionals, has already sold over 300,000 copies, and has been translated into twenty languages. Undoubtedly, his new book, Complete Guide to Asperger’s Syndrome, will be equally insightful.
Are females less likely than males to be born with Asperger’s Syndrome (AS)—or are they simply less likely to be diagnosed? Statistics show a significant diagnostic “gender gap” when it comes to AS: for every ten boys, only one girl is diagnosed.
Like others in his field, Dr. Attwood has given much thought to this disparity. In the following article, he suggests that Asperger’s girls may simply be slipping under the radar, and offers a number of fascinating reasons for why and how this can happen.
The overwhelming majority of referrals for a diagnostic assessment for Asperger’s Syndrome are boys. The ratio of males to females is around 10:1, yet the epidemiological research for Autistic Spectrum Disorders suggests that the ratio should be 4:1. Why are girls less likely to be identified as having the characteristics indicative of Asperger’s Syndrome? The following are some tentative suggestions that have yet to be validated by academic research, but they provide some plausible explanations based on preliminary clinical experience.
It appears that many girls with Asperger’s Syndrome have the same profile of abilities as boys, but a subtler, or less severe, expression of the characteristics. Parents may be reluctant to seek a diagnostic assessment if the child appears to be coping reasonably well, and clinicians may be hesitant to commit themselves to a diagnosis unless the signs are conspicuously different from the normal range of behavior and abilities.
We have a stereotype of typical female and male behavior. Girls are more able to verbalize their emotions and less likely to use physically aggressive acts in response to negative emotions such as confusion, frustration and anger. We do not know whether this is a cultural or constitutional characteristic, but we recognize that children who are aggressive are more likely to be referred for a diagnostic assessment to determine if the behavior is due to a specific developmental disorder, and for advice on behavior management. Hence, boys with Asperger’s Syndrome are more often referred to a psychologist or psychiatrist because their aggression has become a concern for their parents or schoolteacher. A consequence of this referral bias is that not only are more boys referred, clinicians and academics can also have a false impression of the incidence of aggression in this population.
One must always consider the personality of the person with Asperger’s Syndrome and how they cope with the difficulties they experience in social reasoning, empathy and cognition. Some individuals are overtly active participants in social situations. Their unusual profile of abilities in social situations is quite obvious. However, some are reluctant to socialize with others and their personalities can be described as passive. They can become quite adept at camouflaging their difficulties and clinical experience suggests that the passive personality is more common in girls.
Each person with Asperger’s Syndrome develops their own techniques and strategies to acquire specific skills and develop coping mechanisms. One technique is to have practical guidance and moral support from one’s peers. We know that children with Asperger’s Syndrome elicit from others either strong maternal or “predatory” behavior. If the person’s natural peer group is girls, they are more likely to be supported and included by a greater majority of their peers. Thus girls with Asperger’s Syndrome are often “mothered” by other girls. They may prompt the child when she is unsure what to do or say in social situations and comfort her when she is distressed. In contrast, boys are notorious for their intolerance of children who are different and are more prone to be “predatory.” This can have an unfortunate effect on the behavior of a boy with Asperger’s Syndrome and many complain of being teased, ignored or bullied by other boys. It is interesting to note that some boys with Asperger’s Syndrome actually prefer to play with girls, who are often kinder and more tolerant than their male peers.
The author has conducted both individual and group social skills training of boys and girls with Asperger’s Syndrome. Experience has indicated that, in general, the girls are more motivated to learn and quicker to understand key concepts in comparison to boys with Asperger’s Syndrome of equivalent intellectual ability. Thus, they may have a better long-term prognosis in terms of becoming more fluent in their social skills. This may explain why women with Asperger’s Syndrome are often less conspicuous than men with the syndrome, and therefore less likely to be referred for a diagnostic assessment. The author has also noted that, in general, mothers with Asperger’s Syndrome appear to have more “maternal” and empathic abilities with their own children than fathers with Asperger’s Syndrome, who can have great difficulty understanding and relating to their children.
Some individuals with Asperger’s Syndrome can be quite ingenious in using imitation and modeling to camouflage their difficulties in social situations. One strategy that has been used by many girls and some boys is to observe people who are socially skilled and to copy their mannerisms, voice, and persona. This is a form of social echolalia, or mirroring, where the person acquires a superficial social competence by acting the part of another person. This is illustrated in Liane Holliday-Willey’s intriguing autobiography, titled, Pretending to be Normal:
I could take part in the world as an observer. I was an avid observer. I was enthralled with the nuances of people’s actions. In fact, I often found it desirable to become the other person. Not that I consciously set out to do that, rather it came as something I simply did. As if I had no choice in the matter. My mother tells me I was very good at capturing the essence and persona of people. At times I literally copied someone’s looks and their actions. I was uncanny in my ability to copy accents, vocal inflections, facial expressions, hand movements, gaits and tiny gestures. It was as if I became the person I was emulating.
Girls are more likely to be enrolled in speech and drama lessons, and this provides an ideal and socially acceptable opportunity for coaching in body language. Many people with Asperger’s Syndrome have a prodigious memory and this can include reciting the dialogue for all characters in a play and memorizing the dialogue or “script” of real life conversations. Knowing the script also means the child does not have to worry about what to say. Acting can subsequently become a successful career option, although there can be some confusion when adults with Asperger’s Syndrome act another persona in real life, as this can be misconstrued as Multiple Personality Disorder rather than a constructive means of coping with Asperger’s Syndrome.
When a child would like more friends but clearly has little success in this area, one option is to create imaginary friends. This often occurs with young girls who visualize friends in their solitary play or use dolls as a substitute for real people. Girls with Asperger’s Syndrome can create imaginary friends and elaborate doll play that superficially resembles the play of other girls, but there can be several qualitative differences. They often lack reciprocity in their natural social play and can be too controlling when playing with their peers. This is illustrated in Liane Holliday-Willey’s autobiography.
The fun came from setting up and arranging things. Maybe this desire to organize things rather than play with things, is the reason I never had a great interest in my peers. They always wanted to use the things I had so carefully arranged. They would want to rearrange and redo. They did not let me control the environment.
When involved with solitary play with dolls, the girl with Asperger’s Syndrome has total control and can script and direct the play without interference and having to accept outcomes suggested by others. The script and actions can be an almost perfect reproduction of a real event or scene from a book or film. While the special interest in collecting and playing with dolls can be assumed to be an age-appropriate activity and not indicative of psychopathology, the dominance and intensity of the interest is unusual. Playing with and talking to imaginary friends and dolls can also continue into the teenage years, when the person would have been expected to mature beyond such play. This quality can be misinterpreted as evidence of hallucinations and delusions and a diagnostic assessment for schizophrenia rather than Asperger’s Syndrome.
The most popular special interests of boys with Asperger’s Syndrome are types of transport, and specialized areas of science and electronics, particularly computers. It has now become a more common reaction of clinicians to consider whether a boy with an encyclopedic knowledge in these areas has Asperger’s Syndrome. Girls with Asperger’s Syndrome can be interested in the same topics, but clinical experience suggests their special interest can be animals and classic literature. These interests are not typically associated with boys with Asperger’s Syndrome. The interest in animals can be focused on horses or native animals and this characteristic dismissed as simply typical of young girls. However, the intensity and qualitative aspects of the interest are unusual. Teenage girls with Asperger’s Syndrome can also develop a fascination with classic literature such as the plays of Shakespeare and poetry. Both have an intrinsic rhythm that they find entrancing, and some develop their writing skills and fascination with words to become successful authors, poets or academics in English literature. Some adults with Asperger’s Syndrome are now examining the works of famous authors for indications of the unusual perception and reasoning associated with Asperger’s Syndrome. One example is the short story “Cold” in Elementals: Stories of Fire and Ice by A.S. Byatt.
Finally, the author has noted that some women with Asperger’s Syndrome can be unusual in their tone of voice. Their tone resembles a much younger person, having an almost childlike quality. Many are concerned about the physiological changes during puberty and prefer to maintain the characteristics of childhood. Like boys with Asperger’s Syndrome, girls may see no value in being fashionable, preferring practical clothing and not using cosmetics or deodorants. This latter characteristic can be quite conspicuous.
These tentative explanations for the apparent underrepresentation of girls with Asperger’s Syndrome have yet to be examined by objective research studies. It is clear that we need more epidemiological studies to establish the true incidence in girls, and for research on the clinical signs, cognitive abilities, and adaptive behavior to include an examination of any quantitative and qualitative differences between male and female subjects. In the meantime, girls with Asperger’s Syndrome are likely to continue to be overlooked and not to receive the degree of understanding and resources they need.
Reference:
Holliday-Willey, L. (1999) Pretending to be Normal: Living with Asperger’s Syndrome. London. Jessica Kingsley Publications.
Meet Catherine Faherty
Catherine Faherty recognized her calling at age thirteen, when she worked with differently-abled children at a summer day camp. Since then, she has taught children and teens with autism, and now trains teachers and other professionals (locally, nationally, and internationally) in addition to consulting with parents and schools about autism. She also develops training models and manuals at the Asheville, North Carolina TEACCH Center, where she works as a psychoeducational specialist with people on the spectrum. She is the author of a workbook for children with autism and their parents and teachers: Asperger’s... What Does it Mean to Me?
Support groups have long proven their efficacy in helping people come to terms with specific issues. Group members share stories, problems, and solutions that benefit everyone. But what if, while you share many of the groups concerns, you are still a minority within the group? The predominance of Asperger’s men in Asperger’s support groups can make it difficult for Asperger’s women to air problems that are unique to females.
When a young woman in her adult social group at the TEACCH Center expressed a desire for more information that focused solely on the problems facing Asperger’s females, Ms. Faherty responded by forming a women’s group. In the following article, she reveals the concerns that are shared by this “minority within a minority.”
A young woman who has participated for several years in a social group for adults with high functioning autism and Asperger’s, sponsored at our TEACCH Center in Asheville, recently remarked, “There aren’t a heck of a lot of women who have Asperger’s or autism. The majority are males, and although we get along with the guys, there are some issues that they are never going to understand. I wish there was more information specifically for women who have autism.” Her comment prompted the initiation of the first women’s group at the Asheville TEACCH Center. While talking with this woman, who is in her twenties, I was reminded of my own early adulthood. I remember the strong camaraderie and support of “women’s consciousness-raising groups” that sprouted up on college campuses and in living rooms in the 60s and 70s. While struggling for and demanding equality between the sexes in the society at large, we discovered that there were important distinctions that needed to be honored. Together we explored and defined what “being a woman” was about, in the company of other young women searching for self-awareness. Being a member of a women’s “CR” (Consciousness-Raising) group was educational, exciting, exhilarating, emotional, relevant—and never boring.
According to Tony Attwood and other professionals in the field, women with high functioning autism and Asperger’s may be an under-diagnosed population. If this is true, some of the reasons may be attributed to gender differences.
Are there behaviors that are seen in girls with Asperger’s, but not in boys, that we haven’t yet identified as part of the profile, or certain gender-related behavior that might fool us into ruling out the diagnosis? What about the “pretend play” that has been observed in many young girls at our center, which on the surface appears to be quite creative and imaginative? There seem to be many girls (on the spectrum) who are enamored with princesses, fantasy kingdoms, unicorns, and animals. How many diagnosticians observe these interests and skills as imagination, and rule out a diagnosis based on these behaviors? Might this interest in imaginary kingdoms and talking animals be more common among girls than boys, yet still exist alongside other autistic/AS traits?
And what about one typical response to confusion or frustration —hitting or other such outward expressions of frustration? Does this type of acting out occur more often in boys with autism than in girls? Is confusion or frustration simply easier to identify in boys than girls because we already look for it? Among the general population, it is commonly thought that boys do “act out” more than girls. (You sometimes hear a teacher complain there are too many boys in his or her class, and about its impact on the class’s personality!) Is it easier to identify boys as having autism because their behaviors are more obvious than those of girls who may experience inward or passive signs of aggression?
Professionals whose task it is to diagnose individuals with autism or Asperger’s need to learn more about the full range of qualities and personality differences unique to girls and women on the spectrum.
And what about the girls’ and women’s route to self-understanding? Indeed, several women I have worked with who have Asperger’s have talked about the unique challenges they experience because they constitute a “minority” within this special group of society.
I believe that in order to gain self-understanding, each person with—or without—autism needs to see his or her own reflection in the world. I call this “seeing one’s place.” For people with autism or AS, who are already challenged in this area, it becomes imperative that they meet, listen to, talk with, read about, and learn from others with autism. What happens as a result of this coming together is that they are able to see their “reflection” and better understand their own unique styles of thinking and being. Women with autism, although benefiting greatly from getting to know other people with autism, often find that they are the only woman (or one of very few women) in the group.
When I asked the women we see at our center if they would be interested in being in a women’s group, I had hoped that the group could fill a gap in our services. I also hoped that I would learn more about what it means to be a woman with autism. The more I meet with these women, the more I realize we have far to go in understanding the unique challenges that women with autism or Asperger’s face.
One woman explained that, from her perspective, there is subtle interaction between two sets of issues. “Problems related to the [autism] spectrum are combined with problems of society’s expectations of women. How one looks, what one wears, how one is supposed to relate socially, that a woman is supposed to have a natural empathy towards others, expectations about dating and marriage....” Women are affected by autism in the same ways as their male counterparts; however, they are doubly challenged by the added assumptions that society places on the female gender.
At the risk of stereotyping, any man who is a rational thinker and not emotionally in tune with others is often thought of as having “typical male behavior” (think of the TV show Home Improvement). A woman exhibiting these same personality traits might be regarded as odd, annoying, cold, or, depending on the situation, even mean-spirited. Autism, with its particular effects on personality, causes one to appear more rational and less emotionally responsive or empathetic to others. Women with autism note that these expectations indeed may weigh more heavily on them, just because they are women.
At the first meeting, the group members requested specific topics for discussion, issues that they encounter in daily life or ones that they are currently pondering. These included issues that are relevant to women at large such as personal safety; dating and sex; or being taken advantage of when your car needs repair. Other issues they raised were felt by group members to possibly be more significant for women with autism, but common to all— being pressured to conform by getting married; to “act like a lady”; and issues about one’s appearance—to have to “look a certain way.”
However, there were topics that all agree are a direct result of being a woman with autism, such as common behavioral and social expectations by the society at large. At the top of the list were the expectations of being sensitive to others and displaying empathy.
Women with autism have expressed their feeling that more is expected from them than from their male counterparts, simply because of their gender. Members of the group felt that expectations to be sensitive and empathetic—qualities typically attributed to women—are unfair and difficult to meet. Discussion centered on how these behaviors require skills such as the ability to accurately read and respond to body language, along with the inherent desire to “take care of others, emotionally.” Interestingly, after discussing these issues, the first requested topic was how to read body language and how to tell if someone is trying to take advantage of you.
The topic that generated the strongest emotional response from the group was the members’ personal experience of feeling as though they were being treated like children. Parents are often more protective of their daughters than their sons. Daughters with autism talked about feeling overly protected into womanhood. In many cases, this is needed, although without understanding the parent’s perspective, the adult daughter can feel unfairly babied. Some women talked about the resentment they felt toward people who for many years had been trying to teach them “socially appropriate” ways of acting. “Enough already!” was a common response.
The desire to be respected as an individual, and as a woman, was voiced clearly and strongly. Although it is probable that men with autism wish just as fervently to be respected as individuals and as men, it was the women who voiced these desires clearly, with deep emotion and passion, when talking with other women.
A personal note from Catherine Faherty:
I want to thank the members of this first group who have given me permission to share this information. For those of us who live and work with women with autism, it unveils a new perspective on how we must think about and relate to the disability. I applaud and encourage other women with autism—and those who care about them—to form women’s groups for support, encouragement, and, in the words of one group member, “...understanding from like-minded peers.”
Meet Sheila Wagner, M.Ed.
Sheila Wagner has twenty years experience in the field of autism, and has written Inclusive Programming for Elementary Students with Autism, which won the Autism Society of Americas Literary Award for 2000; Inclusive Programming for Middle School Students with Autism/’Asperger’s Syndrome; and is co-author of Understanding Asperger’s Syndrome FAST FACTS. Her Inclusive Programming books each provide an inclusion program for students with severe disabilities. (Keep your eye out for her next book, Inclusive Programming for High School Students with Autism.) Her engaging and readable style, coupled with her extensive knowledge and classroom practice, makes her books indispensable to professionals and nonprofessionals alike.
This article explores why the system fails to diagnose Asperger’s girls, and asks, “Are we as a nation setting standards for educating students with AS based solely on boys?” The answer: “Yes.” Sheila Wagner proposes solutions so practical you’ll wonder why they weren’t implemented long before: better training at all academic levels; peer programs enlisting fellow students to integrate AS girls into the school community; social-skills groups comprised of girls instead of groups populated primarily by boys; modified academic strategies and girls-only instruction on menstruation and sexual issues. Equally valuable is a list of behaviors to alert teachers that a girl should be evaluated for Asperger’s. This list should be in every educator’s office, and would go far toward answering the poignant question, “Where are the female students with Asperger’s Syndrome?”
“IOthello