Asperger's and Girls

A
s 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

The Pattern of Abilities and Development of Girls with Asperger’s Syndrome

Meet Tony Attwood, Ph.D.

D
r. 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.

T
he 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.

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