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Opinion / Viewpoint

Focus on autism must broaden to include non-binary genders

by  /  19 October 2015
The Expert:
Expert

Emily Brooks

Graduate student, City University of New York

Many articles about women with autism focus on the fact they are often diagnosed later than men or on the differences between men and women with autism. I believe we need to broaden the conversation to take into account a diversity of experiences, including people who identify as ‘non-binary’ instead of as men or women.

The stereotypical narrative suggests that for someone like me, who was diagnosed on the autism spectrum as an adult, childhood was a missed opportunity for early intervention and that without state-sanctioned services, I am a mess.

This singular focus on age at diagnosis carries with it many negative connotations. By saying that female-bodied people, including those like me who may not identify as women, have missed out by not being diagnosed as children, we’re really saying that there is only a small window of time in which a diagnosis can help people — and therefore, that there’s not much to be done for older children, teenagers and adults.

By focusing on ‘catching’ autism in its ‘early stages,’ we’re also acting as if autism is a disease, and a progressive one at that. Articles about children who ‘outgrow’ autism after intensive behavioral therapy add to the idea that being autistic is temporary.

It’s certainly important to listen to the perspectives of the many women who face unnecessary hardship due to later-than-expected diagnosis and a lack of access to services. But it’s not always the end of the world if someone is not diagnosed with autism at age 3. It’s also past time for mainstream discussions of ‘women with autism’ to recognize that a significant portion of the autistic community identifies as gender-queer or non-binary.

Ideal childhood:

I didn’t need an autism diagnosis to receive support and services, including occupational therapy and cognitive behavioral therapy, as a child. I did not have applied behavioral analysis (ABA) or participate in special education autism programs. Still, I had an ideal childhood.

At first, my early elementary school experience was negative: I had a teacher who bullied me, and I was bored with the material. The school refused to help when my parents advocated for me. So after two years of getting nowhere with the school, my parents pulled me out and home-schooled me.

Because my mother taught me, I had a fully personalized education, with the ability to spend more time on things that were difficult and less on things that came easily. My mother used techniques such as Floortime, a method based on child-directed play and relationship-building. She read me books that explained idioms, helped me with friendships through playing social skills games, included sensory activities — using materials such as shaving cream, sandpaper, pudding and rice — and integrated movement, dance and art into my school day. She also took me to occupational therapy for motor skills and coordination. I received counseling for my anxiety and obsessive-compulsive disorder when I needed it. Most importantly, instead of pathologizing us, my parents saw all of us children for who we are.

When people assume that I missed out because I was not diagnosed as a child, they are implicitly discounting the services my parents provided to me as well as the many positive experiences I had. Although many professionals consider it to be the best option for autism, ABA is not the only way to go. In fact, many autistic people consider ABA to be not therapy but rather training for acting like everyone else. The emphasis on early intervention for autism also allows us to skirt the fact that services for adults are sorely lacking.

Binary boxes:

I was diagnosed with autism spectrum disorder in my early 20s. I sought the official diagnosis because being in the ‘real world’ after college presented me with new challenges that I couldn’t face without help. The particular way I communicate with others, and some issues with executive functioning, made meeting expectations as an adult harder.

After finishing my college degree in the quiet countryside, I also struggled with the sensory onslaught of a bustling city. I felt like giving up on making friends after about 25 failed attempts. With my diagnosis came access to social and recreational programming, therapists who understood and an autism community.

For the past two and a half years, I have attended a program for women with autism in New York City. The program gave me access to fun activities and a social life when I felt isolated. But just because I attend a women’s group doesn’t mean I see myself as a woman. As a non-binary queer person, I’m sad that both the LGBTQ and the autism communities don’t offer more inclusive programming.

Even talking about ‘women with autism’ erases those of us who are female-bodied and autistic but don’t see ourselves in terms such as ‘women,’ ‘ladies,’ or ‘ma’am.’ The pointed focus on the differences between men and women with autism — most of which are socially created — leaves out people like me, who don’t adhere to a binary gender identity.

Gender norms should not be imposed on people with autism to make the rest of the world more comfortable. Why teach girls with autism how to apply makeup, dress in a feminine manner and shop? Therapists, educators and parents only consider these to be important goals because our society imposes strict gender norms.

Just because I choose not to wear makeup or I wear a shirt from the men’s department doesn’t mean that I am incapable of style. Rather, this is my style as a queer, non-binary autistic adult.

As a member of the LGBTQ community who is also autistic, I encounter inequality based on my gender identity, my sexual orientation and my disability. Societal barriers in housing, employment, transportation, healthcare and education systematically exclude queer, gender-queer, transgender and disabled people; outdated and negative attitudes about gender, sexuality and autism affect our social relationships.

Queer environments don’t often account for our sensory processing issues or social differences, whereas autism services don’t often recognize that we may identify beyond the gender binary or have queer relationships. Shifting the focus from the tired narratives of delayed diagnosis and sex differences can help the autism community take responsibility for improving our day-to-day quality of life, whatever our age at diagnosis or gender identity.

Emily Brooks is a writer, consultant and graduate student in disability studies at the CUNY School of Professional Studies in New York City.


  • Akiva

    How do you write an article this long without once mentioning the existence of autistic dmab non-binary people and autistic trans women? Do you think they might have trouble getting into your “women with autism” group? Do you think they might have a completely different set of troubles around the “extreme male brain” stereotype?

    • Samantha Cycles

      Non-binary covers dmab and trans people. Emily is speaking from a personal perspective, not from your perspective. Cut Emily a break and write your own article. We need more queer autistic stories. I was CAMAB and had to fight to get back to where I am and should have been. I’m a genetically intersex female autistic and you don’t hear me telling Emily thus article wasn’t enough. Seriously, please write your own article, but with less anger. We need more stories from all perspectives.

  • Seth

    “services don’t often recognize that we may identify beyond the gender binary”

    It’s pretty much a problem with everything where I live.

  • Quinn Harbin

    Gender identity among those on the spectrum is an interesting topic itself that I don’t think we understand. It seems that many more people on the spectrum are more “fluid” and display greater variance in gender identification than the NT population. Moreover, many of the trans or “gender queer” autistics I’ve met did not display early cross gender behavior as we expect in trans development. What can we make of this in terms of identification? I also do not see much support for the “extreme male brain” theory, at least in terms of social behavior among those on the spectrum.

  • Samantha Cycles

    Oh my, I simply love this article. I have friends who are nonbinary and left out from many communities and it’s frustrating for them, and for me as their friend.

  • Ever Thinker

    This article is very helpful to me. I’d be interested to know if you know of any groups for gender queer autistic teens in NYC. My 14 almost 15 year old ASD daughter says she is gender queer, and about a year ago chopped her hair off and began to dress very androgynously. She currently binds her breasts, which frankly I’m surprised she can stand because she has lots of sensory issues. She never seemed very “girly” and was more interested in geology and Egyptology from age 3. She currently homeschools because high school was too over stimulating, but that means she has zero contact with kids from the GSA. We live in CT but would definitely drive to NYC for any meet ups with autistic gender queer teens.

  • AutismDadd

    Who has the time to dissect and critique such complicated thinking? Who can ascertain where to start? Areas of thought in regard to autism are varied, but accuracy may be off. Because I view autism in over 90% of cases to NOT be inherited or born with, I view it as caused. Gene studies support this, but main stream science and media make little mention of it as they continue to misinform the public. People labelled autistic often have multiple issues and gender confusion is one of many. Unfortunately we live in a time when most of what we eat and drink has been tainted with chemicals, heavy metals, and endocrine disruption is a reality. What I’ve observed is that people latch on to what they believe and they choose to believe who they are is who they were always supposed to be. They defend that and they join other like thinkers and CREATE a reality they commit to. They fear not being THEMSELVES and begin to rationalize their existence based on this ideology that its normal or evolutionary etc. The “born this way” scenario works in some cases, but certainly not all.

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