Asperger's and Girls (2 page)

Asperger’s Syndrome in Women:

A Different Set of Challenges?

Meet Catherine Faherty

C
atherine 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.”

Educating the Female Student with Asperger’s

Meet Sheila Wagner, M.Ed.

S
heila 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?”

^“
I
want you to come and observe a girl in my class. Something is very odd, and I don’t know how to help her. She says the most outrageous things in the middle of a lesson, disrupting the class. The other students will have nothing to do with her, and because of her odd behaviors, she has no friends at all.” This would be worrisome if it was elementary school, but this is high school—the sophomore year. This student, “Cary,” is small for her age and is very bright, but struggles in almost all classes. She scurries down the hallway between class segments and doesn’t talk to a soul. She trails a small, overnight suitcase on wheels that bumps into students in the crowded hall (she does not seem to notice), generating frowns and angry looks from those around her. Upon entering her next classroom, Cary immediately goes to the teacher and tells her that she was up very late the previous night doing her homework for this class, and her mother told her to go to bed. She was not able to complete the assignment and she blames her mother. She then goes over and sits at her desk, shuffles through the myriad papers crumpled in her suitcase, and pulls out a blank paper, a book, and a broken pencil. Cary does not talk to any of the other students coming into the class, nor do they talk to her, even though all the other students are talking and laughing together. During class time (English lit—a discussion of Shakespeare and
Othello
), Cary is very attentive and wants to answer all the questions and is interested in the lesson, offering her analysis of the dialogue, firmly believing that she understands the motivation and thoughts of the characters. She blurts out time and again, needing reminders to raise her hand. When she is called on, Cary provides such extensive detail about the conversations taking place in the text that the teacher must interrupt to move on with the lesson. Unfortunately, her interpretation of this complex text is simplistic, often missing the meaning of the intense dialogue between characters, resulting in peers glancing her way and rolling their eyes—all of which she misses. Despite her high participation in this class, she is only earning a C-, due to her difficulties with the content, her tardiness with assignments, and the borderline quality of her written work. She also does not participate well in group projects because she insists on directing the scope of the assignment, eliminating another valued grade. Her parents are worried for her and do not know what her future will hold, since she does not appear to have any long-term goals or strong motivation about her future.

What is the problem here? Maybe a better question is:
where do we start in listing them?
Although this student went on to receive a diagnosis of Asperger’s Syndrome, the question that begs to be answered is, “Why did it take so long?” This student is in high school, not elementary school.

Identification of students with Asperger’s Syndrome is still difficult in our nation’s schools, but is improving somewhat as a result of numerous publications on Asperger’s Syndrome, a selection of which includes Attwood, T., 1998; Myles, B. S. & Adreon 2001; Myles & Southwick 2005; Myles & Simpson, 2003; Bashe, Kirby, Cohen & Attwood, 2005; Willey, 1999; Jackson & Attwood, 2002; Wagner, 2004, leading to better teacher training and knowledge of this disorder. Still, Asperger’s Syndrome continues to be the stepchild of the Autism Spectrum Disorders. Because of the somewhat heightened recognition, many male students with Asperger’s are identified early, but the same cannot be claimed for the females in this population. When considering the entire spectrum of students with autism disorders, the ratio of males-to-females diagnosed is 4 to 1(Ehlers and Gillberg, 1993), but as cognitive abilities rise, the ratio of male/female also rises with Asperger’s Syndrome showing a 10:1 ratio in
clinical
settings (Attwood, 1999). Amazingly, referrals for evaluation and diagnosis of boys are almost ten times higher than for girls (Gillberg, 1989), causing us to better examine the reasons for this disparity. In considering these statistics, we must ask:
where are the female students with Asperger’s Syndrome
? Once found, what are the different considerations that must be noted diagnostically and, ultimately, educationally, when developing programs for girls as opposed to boys with this disorder? It begs the question:
are we as a nation setting standards for educating students with AS based solely on boys
? How are the girls surviving through the educational years? It is, perhaps, time to take a more critical look at this population in schools, in order to better define the similarities and differences of boys versus girls with Asperger’s disorder and thus better the chances of support and integration.

The case scenario outlined above is typical of female students with Asperger’s Syndrome. “Cary” has made it through to high school without identification, appropriate support or trained teachers. She has most likely been met with social isolation, lowered grades, loneliness, confusion and, as with so many with this disorder, depression. Her teachers have passed her through the years because she is bright and has managed grades above failing, even though she appears to be so different from the other students and is not living up to her documented intelligence scores. If we could go back in time with current training and knowledge, we might have a better chance at catching this student and providing the help she requires to reach her full potential. So let us try to prevent this same outcome for other female students who are suspected of having Asperger’s Syndrome.

The Role of Training

School Psychologists

It is critical for the nation’s school systems to be, first and foremost, trained in the area of Asperger’s Syndrome in order to recognize this disability in their student population. Many, if not most, school psychologists obtain training in the area of autism, though the breadth and depth of that training can vary widely from school to school, and state to state. Ultimately, special education directors and administrators are looking to school psychologists to help them sort out the various disabilities. School psychologists need to stay ahead of the game by being fully knowledgeable of the upper regions of the Autism spectrum and Asperger’s Syndrome in specific. Without this specialized training, the very people who should clarify the disorder will likely be the ones who will send this student down the wrong educational road, attributing the difficulties faced by Asperger’s students to the more emotionally-laden disabilities, to learning disorders, or to attention-deficit/hyperactivity disorder. Asperger’s is different, and so much more.

Catherine Faherty (2002) suggests that “it is easier to identify boys as having autism because [their] behaviors are more obvious than girls who may experience inward or passive signs of aggression.” Because of this milder presentation, many females with Asperger’s may go undiagnosed. School psychologists must recognize that the female student with AS will pose a somewhat different profile than the boys with this disorder. This fact must be imbedded within any training on Asperger’s Syndrome. Many characteristics will be the same, of course, since the diagnostic criteria for Asperger’s Syndrome in the
Diagnostic and Statistical Manual-IV-TR
(American Psychiatric Association, 2000) do not differentiate between boys and girls. However, this author will highlight some clinical and anecdotal points that have been observed over the years in the hopes of diagnosing the girls with this syndrome sooner, and providing them with better educational programs. The following are some points to ponder.

• Girls with AS are often missed in the early elementary years because they may be viewed more as passive personalities, rather than as girls with social impairments.
  
• Girls with AS may not call attention to themselves as boys with AS often do by posing a disruption factor to the classroom.
  
• Girls with AS may also show perseverative interests (such as Barbie dolls, Bratz Girls, unicorns, horses, and ponies), but they may simply appear to be age-typical. It is not at all unusual for little girls to be “horse-crazy” and carry it throughout their lives, but typical girls who are “horse-crazy” are usually able to expand their areas of interest and be captured by other activities as well, especially new fads that seem to come down the pike with regularity; the female with Asperger’s Syndrome may not.
  
• Many boys with AS struggle with math; girls with AS may also struggle with math, but their difficulties may be dismissed because “girls don’t do well in math anyway.”
  
• Girls with AS who have difficulty making sustained eye contact with others are often viewed as shy coy embarrassed, or naïve and innocent, rather than as having the poor social skills inherent in an autism spectrum disorder.
  

Handwriting difficulties may be one area that can be picked up as an early indicator that separates them from their female peers. Typical female students in elementary school usually love to color, to stay in the lines and to draw detailed pictures of horses and families. The female student with AS may hate drawing and coloring and do poorly at it. When boys with AS color, they sometimes hate it, too, though it is often dismissed because all boys tend to use larger strokes, lose interest in adhering to the strict guidelines of coloring within the lines, and couldn’t care less if their marks go astray (though this is a broad generalization, of course).

Girls with AS will face the same difficulties in the social domain that boys with AS face, but the difficulties may not be recognized as such and their profiles may appear more mild. Hints as to the true diagnosis can be found by teachers and psychologists who watch for the discrepancy between typical girls’ social maturation and that of girls with AS. Typical girls become socially savvy early—choosing “boyfriends,” becoming enamored of the latest fashions, having early knowledge, and sometimes use, of make-up, of the latest fads in clothes and fashion, and are very cognizant of what other girls are doing in this social realm—even in early elementary grades. Typical girls are interested in how they are viewed by their peers and by the opposite sex far earlier than the boys are. Girls with Asperger’s are lost in this area, being much more socially immature and reticent than their typical age-mates. If this were the only area of difficulty, they might indeed be just socially immature. But their female counterparts in school leave girls who have AS in the social dust quite quickly.

Although girls with AS fall behind their female age-mates early in their social/peer relationships, this area may not be recognized as part of a disability simply because of the ways in which society views females (Faherty, 2002). Women are assumed to take a more subservient or withdrawn role in comparison to the rough-and-tumble boys, and if one girl is much more hesitant to take part in the whirlwind of age-related social culture, many parents thank their lucky stars, and teachers are delighted with their “innocence” and view them as “sweet.” After all, most parents are truly horrified when they finally understand the words to popular music and are shocked at the actions taking place in video games or movies. Who wouldn’t be grateful if their little girl did not seem interested in them? What is wrong with that? By itself, of course, nothing; when counted as a component of, and in combination with other areas of difficulty, worrisome.