Asperger’s Syndrome in Women: A Different Set of Challenges?
By Catherine Faherty
"We have far to go in understanding the unique
challenges that women with autism or Asperger’s face."
A young woman who has participated for several years in a
social group for adults with high functioning autism and Aspergers
sponsored 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 at
the Asheville TEACCH Center. 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 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 Aspergers may
be an underdiagnosed population. If this is true, some of
the reasons may be attributed to gender differences.
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 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 Aspergers 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 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.
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.
BIO:
Catherine has worked as a psychoeducational
specialist at the Asheville TEACCH Center, one of the regional
centers with the TEACCH Program through the University of
North Carolina. She participates in weekly diagnostic evaluations
for children and adults with autism, is a parent consultant
and child therapist, consults to school programs, trains teachers
and other professionals locally, nationally and internationally,
and runs social groups for adults with autism. Catherine is
the author of Asperger’s: What Does it Mean to Me? (2000,
Future Horizons) and is a frequent presenter at conferences
across the U.S.
Reprinted from the July-August 2002
issue of the Autism Asperger's Digest, a bimonthly
magazine devoted to autism spectrum disorders. Published by
Future Horizons, Inc. For more information:
Autism Digest or call 800-489-0727
Nov 30, 2007 - 
