Language Note: Over the decades, many different terms have been used to discuss autism. AANE is shifting to identity-first language and the term “Autistic” to describe our community, but we continue to respect each individual’s choice of language to describe their own neurotype. We believe that sharing a wide variety of stories provides invaluable insight into the diverse perspectives and experiences of our community.
I had always thought of myself as a sensitive and independent introvert who had found her way after an anxious and lonely childhood. When I hit 40 years old, something shifted – so many of my peers had reached the traditional milestones of marriage, children, home buying, etc., none of which I had “achieved.” And suddenly, I really cared. I had previously embraced what I knew to be a somewhat unconventional life, but suddenly I felt more alone and more different than ever before.
I started to see the extent to which my unusual perceptions and thinking patterns diverged from some more typical norm. I wanted answers, so I started talking to people (friends and professionals) about this. I described my tendency toward “tunnel vision,” of losing the forest for the trees, of focusing so intently on certain pursuits that I could lose touch with long-term planning or the people around me. I also described my deep need for solitary time and the deep fatigue that ensues without it. I knew that there had to be an explanation, but nobody seemed to know what I was talking about. In a moment of exasperation, I went online and started searching for answers. This sent me down a rabbit hole in which I eventually stumbled upon a description of Asperger Syndrome (AS); just like that, I knew that I had found my home.
I devoured books written by, and about women, on the spectrum, I discovered forums for Aspies, and I reached out to AANE. I was surprised and relieved to encounter experiences and feelings that resonated so clearly with my own. The stories I encountered dispelled my own ill-informed stereotypes of what being on the spectrum meant. I don’t obsess over numbers and do not particularly care about trains (traits I had heard were hallmarks of Asperger’s). Additionally, I am tremendously, sometimes exhaustingly, empathetic – even though I do not always display these emotions on my face or communicate them through words. I discovered in the stories that I read a rich and complex community of others who felt as alien as me. Finally knowing that I was no longer alone, my spirits lifted and I could better understand the struggles on my younger years, and see the value in my eccentricities.
Since that time, personal memories and experiences have flooded into my mind, taking on entirely new significances in light of the Asperger picture:
- That all-too familiar feeling of panic that would into my chest when called upon to make small talk.
- My extreme sensitivity to sound, to light, and weather changes, so intense that they can trigger debilitating migraines.
- My tendency to focus on tasks so intently that the rest of the world disappears – if you were to scream my name while I am making art, I probably would not hear you.
- Those moments in gym class when I panicked if a ball flew anywhere near my range. I was that kid who was chosen last, hopelessly inept at any team sport.
- That feeling of terror in navigating the halls in fifth grade. Easily disoriented, I found the simple square building to feel like an M. C. Escher drawing.
- The time a kid in high school asked me why I dressed like Daphne from Scooby Doo – probably because I liked soft, simple fabrics, and loathed all of that irritating makeup and jewelry.
- That moment of surprise at age thirty when I discovered that everyone didn’t experience the months of the year as colors.
- My desperate need for visual organization, to the point of being driven to tears by the presence of clutter.
- The time in 7th grade when a “friend” ridiculed me for noticing the spectacular shade of green the leaves turned after a rain; we stopped being friends, and I learned to keep my mouth shut about the ways that the visual world could awe me. The feeling of shame was no stranger to me by that point.
- My ever-resurfacing fantasy of becoming a solitary potter in the woods.
- The fact that I ate a single bagel with cream cheese for lunch every day in high school; it did not cross my mind to do anything else.
- My recurrent melt-downs when I came home from middle school due to the stress of trying to anxiously navigate a lonely and confusing world.
- The time the guy at college asked me why I would “ninja-fade” when our friends were hanging out together. I didn’t see why I needed to explain to anyone why I was about to vanish, burnt out from group-socializing.
- My successes in structured school environments in contrast to my challenges with long-term, real-life planning. I see solutions where others do not. Other times, I miss the “obvious.”
- The fact that I still need to constantly remind myself to maintain eye contact with people during conversations.
- My prowess in landing interviews in my 20’s, due to my ability to think and write, combined with my tendency to bomb those same interviews, arriving as a deer in headlights; in general, you could say that I was rich in book smarts and poor in street smarts.
- My deeply emotional nature, coupled with a complete neglect in describing those feelings to the people around me.
As the years passed, I blended better and better, but I was exhausted. Few people knew that I struggled – I graduated at the top of my class and I didn’t cause problems in school. I learned to adapt and to mimic. I immersed myself in the foreign languages that I did not speak by taking jobs requiring social interaction and training my uncoordinated body in martial arts and yoga.
I finally understand. Recognizing how my differences have influenced my experiences and choices has been an immense relief to me. I now hope that my new diagnosis will better help me advocate for myself and for others (especially the unrecognized women) who might be feeling alone or undervalued in a loud and chaotic world.
There were moments during this whole journey, when I did grieve the paths I might have taken or the pain I could have avoided with earlier self-awareness and support. Mostly, I really like who I am and where I am. I feel that I am on a ride of discovery, from a place of optimistic curiosity and whole-hearted acceptance. I know that my Asperger profile is an important part of who I am. I also know that it is just a small part of who I am. I am also a friend, a sister, a daughter, an artist, a writer, an athlete, a business owner, a support for so many others who are trying to find their way. And still, like anybody else, I have difficult moments – but the difference is that I know now how and where to reach out.
Additional Resources for Women
http://www.aane.org/autism-info-faqs/library/autistic-women-and-girls/
http://autismwomensnetwork.org/
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