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On Being a “Unicorn”

“Tell me and I forget. Teach me and I remember. Involve me and I learn.”

 -Benjamin Franklin

 

Usually writing comes easily to me. It’s one of the unexplainable gifts that comes with my autistic brain. I fully expected that I would sit down in front of the screen, access my encyclopedia-esque brain, and bang out this article in an afternoon. After all, the topic of females on the spectrum is not just something I do for work every day but it IS my every day. My every single waking moment is being a living, breathing woman on the autism spectrum.

Day one passed without a word written and I just thought, “Oh I must be tired. Maybe it was a bit of a sensory overload day yesterday,” so I waited. Day two, I kind of knew what I should say but it didn’t feel right. So, I left my background program running and decided to try again tomorrow. On and on for a week straight, I tried to write with no success. The blank page in front of me never filling with words. My default setting was corrupted but why? Why with this topic that I live and breathe daily was I struggling to get my thoughts on paper? And then it finally occurred to me. I was tired.

Tired of repeating the same things over and over again. Tired of advocating to deaf ears about the challenges women on the autism spectrum face. Tired of reminding people how many women are diagnosed late in life because their sons get diagnosed first. Tired of describing the clear difference between the male and female phenotypes we see repeatedly in the ASD community. And mostly, I was tired of being reminded how little this part of our community has changed regardless of how many mountaintops the female autism advocates scream from.

When I was first diagnosed at age thirty-six with what was then called Asperger Syndrome, I remember the relief. The sense of belonging. The very fresh eyes as I began to understand myself for the first time. I also remember a clinician who was so excited to meet me because meeting an adult female diagnosed late in life was such a treat. I remember the words that were used. “You are the unicorn of unicorns,” she said. As a female diagnosed after age thirty, having nothing to do with a spouse or a son, to her, I was a mythical beast that is rarely sighted and even more rarely captured alive.

At the time, I was honored to be considered so unique. Unicorns are magical, mythical creatures known for their gentle, intelligent and, YES, empathic nature. Not to mention their ability to heal. They have made their way through time from the Ancient Greeks to modern science fiction. There is even a well-known legend that when Noah gathered two of every kind of animal, he neglected to gather the unicorns, which is why they do not exist today. I rather enjoyed thinking of myself as a rare mystical creature, for a while.

Years later, the idea of being so very distinctive has lost its shine. Because the truth is, I am not a unicorn, let alone a unicorn of unicorns. In fact, there are more and more females on the autism spectrum getting diagnosed, speaking up, demanding that our voices be heard and that our needs be met each year. We live in the shadow of what once was believed to be a childhood male disorder. The idea that autistics would grow up, grow old and not just be capable of but desire a successful and happy life is just now being addressed. Within the autism community, the very notion that someone would want to cure autism, a very important core piece of your personhood, is barely ever mentioned anymore. We talk about inclusion, diversity, supports, challenges, and life planning. Still, the mountain that is the female autism phenotype has barely begun to be traversed.

We have long conversations about how women on the spectrum present differently than men and why. We talk about how the evaluation and testing materials are skewed toward young males. Yet we are stuck in the 4:1 male to female ratio the CDC published years ago though it likely is not representative of the actual population as many women live their entire lives without ever receiving a formal diagnosis. We have only just begun to discuss the unique needs and supports of women on the spectrum. We become wives, mothers, scholars, and so much more but still the supports are not our supports. Most recently, the topic of the lack of research studying adult females on the autism spectrum has come to the forefront of conversation. An important topic, as without quality research the supports will not get funded. All in all, we do A LOT of talking. But what we really need and what we really want is some doing. We need supports to help girls going through puberty with sensory issues to be able to find and wear a bra should they desire. We need systems in place to support us as professionals. We need education for the women on the spectrum that choose to be wives and mothers. We need the researchers and clinicians to include us in the work they do because we want to be involved as much as they will allow us. We want the inclusion, the diversity, the testing, and the supports; to be equal to that of our brothers on the spectrum as they are our community as much as we are theirs.

This unicorn of unicorns no longer wants to be a unicorn at all. I just want to be me. To be supported, respected, challenged, and involved not as a mythical beast but as an adult woman living a happy successful life on the autism spectrum. To know that I only have to traverse a mountain if I want to, not because I have to. I want to stand side by side with my fellow spectrumites, knowing that we share a neurology, that our needs are being met equally and easily, that we are included in our futures, and that our voices are being heard.

I want to hang up my horn and just breathe knowing that my time as unicorn was not wasted.

 

Becca Lory, CAS, was diagnosed with Asperger Syndrome as an adult and has since become an active advocate for individuals on the autism spectrum. She is currently the Director of Development of GRASP (Global and Regional Asperger Syndrome Partnership) as well as sitting Chair of the GRASP Board of Directors. Ms. Lory has published multiple articles, speaks publicly about being on the autism spectrum with the goal of spreading awareness, understanding, and encouraging self-advocacy.  Ms. Lory is developing and teaching improvisational workshops in order to assist adults with the practice of independent living skills. For more information about GRASP, please visit www.grasp.org. To contact Ms. Lory, email blory@grasp.org.

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