By Catherine Faherty
FIRST, THIS NOTE:
I wrote the following article more than 20 years ago. There was very little to nothing written specifically about women/girls on the spectrum at that time. I am thrilled that since that time, women on the spectrum have emerged as a large voice in the autism community worldwide! Local grassroots groups have sprung up, as well as many online groups on Facebook and other social media. There is a full range of bloggers who speak for themselves and other women, communicating intimately and personally, as well as participating in powerful activism. Yes. For historical perspective, I have decided to continue to include this article. This group was a first of its kind.
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A young woman who has participated for several years in a social group for adults with high functioning autism and Aspergers I run at our TEACCH Center in Asheville, recently remarked, “There aren’t a heck of a lot of women who have Aspergers 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 in Asheville. While talking with this woman, who is in her 20’s, I was reminded of my own early adulthood. I remember the strong comradery and support of “women’s consciousness-raising groups” that sprouted up on college campuses and in living rooms in the 60’s and 70’s. While struggling for and demanding equality in 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, women with high functioning autism and Aspergers may be an under-diagnosed population.
Are there behaviors that are seen in girls with Aspergers, 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 teachers complain there are too many boys in his or her class, and its impact on the class’ personality!) Is it easier to identify boys as having autism because these behaviors are more obvious, than girls who may experience inward or more passive behavior?
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, perhaps more importantly, what about the girls’ and women’s route to self-understanding? Indeed, several women I have worked with have talked about the unique challenges they experience because they constitute a “minority” within this marginalized 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 already are 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 might be the only woman (or one of a 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 are 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 “Tool Time”). 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, topics that they encounter in daily life or ones which they are currently pondering. These topics 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 that they feel that more is expected from them than from their male counterparts – simply because of their gender. Members of the group felt these expectations to be sensitive and empathetic, typically attributed to women, are unfair and difficult to meet. Discussion centered on how these behaviors require skills like 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 to explore was reading body language and how to tell if someone is trying to take advantage of you, and how do you know if someone is really a true friend.
The topic that generated the biggest emotional response from the group was the personal experience of feeling like one was “being treated like a child”. Parents, in general, 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 this desire is probably equally shared among grown men with autism, the women voiced these desires clearly, with deep emotion and passion, when talking with other women.
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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. It unveils for those of us who live with and work with autistic women, a new perspective on how we must think about and relate. I applaud and encourage women 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.”