“I Was Diagnosed With Autism As An Adult—Here’s What It’s Like”
By Anonymous as told to Kristin Toussaint, Photography by Unsplash
“I knew I had this beautiful way of experiencing the world, but I also knew that I was a little bit alone in experiencing it that way.”
I started to realize that I was different from other people in middle school. That’s a tough time for a lot of kids, but I felt a clear shift — like I couldn’t really connect with my peers and I was lost. I had friends, but I still felt excluded and didn’t understand—or didn’t really care about—the new social rules dominating our lives. I was anxious, and it was like I perceived the world differently.
It wasn’t until last year, at 41 years old, that I fully understood why: I’m on the autism spectrum.
It’s rare for adults to be diagnosed with an autism spectrum disorder, just as it’s rare for girls and women to be diagnosed. Autism spectrum disorder is about 4.5 times more common among boys than girls, according to the . have suggested that it’s due to a gene mutation in the X-chromosome; boys only have one X-chromosome, so if they’re missing a gene, they’re at a higher risk than girls who have two X-chromosomes.
When I went to the clinician and said I thought I might be on the spectrum, I felt like a unicorn. She had to get a whole new set of forms that were different than the ones she used to diagnose children, and we had to go through questionnaire after questionnaire, detailing my life back to how I saw things as child.
Like when I was in seventh grade and looked out the classroom window: Everything was this brilliant shade of green after the rain and I felt my heart sing. I’d always been deeply impacted by the visual world, and I remember that scene just brought me so much joy.
But when I later mentioned to a friend what I saw and how it made me feel, they couldn’t relate. Even worse, they ridiculed me for it, since it wasn’t a “cool” thing for me to say. I knew I had this beautiful way of experiencing the world, but I also knew that I was a little bit alone in experiencing it that way.
Recently, when I was exploring the possibility that I may be on the spectrum, I read a book that discussed why girls aren’t diagnosed as often as boys, and it said girls on the spectrum go to school and use all of their energy to get through the day just holding it together. Then they get home and they fall apart. It’s like they’re two different people.
My teachers saw me as a sweet, well-behaved, top student but I was just trying not to crumble under the weight of all my anxieties, which felt as heavy as cement on my shoulders. When I was home, I would melt down.
Even though I didn’t have the tools to understand my different needs when I was young, I found ways to cope with my limitations as I got older. I gravitated to the outdoors and to yoga and meditation, recognising that I really needed alone time to recharge and recover from social situations.
One of the factors of being on the spectrum that’s not well known is environmental sensitivity—it’s like I experience everything at a higher frequency. Light, noise, colour, temperature, and the feeling of fabric against my skin are all enhanced for me to a sometimes overwhelming degree. I think it can be an amazing strength, but it can also be incredibly challenging. As I went through school and graduated college, I had no idea what I wanted to do. I knew that a traditional office environment would be too uncomfortable for me—sensory overload—so I took the path less traveled. I worked outside throughout my twenties, taking jobs on organic farms, and eventually started a career in health, becoming trained as a yoga instructor and wellness coach.
As I entered my forties, I came to this burnout point. I had this sense that I was working so much harder than the people around me, and yet I had a hard time getting ahead. I wasn’t at the same point in my life as my friends; I felt out of step.
Then I was surfing around the internet one night and somehow came across an Asperger’s quiz. Curious, I took it, and I scored very highly. It was a bit shocking, but it also opened up this rabbit hole that I instantly fell down, devouring books on the subject and meeting other women on the spectrum and eventually talking to a neuropsychologist.
I began to encounter women who were professional and successful in the world and who also had these struggles that I deeply resonated with. It was a relief to feel like I was no longer alone. I felt closer to really, truly understanding myself.
I don’t think of myself as any less now that I’ve been diagnosed. I don’t think of this diagnosis as a disability. In some ways, I think of it as superpower. It’s just that, unfortunately, I live in a world that I’m not entirely adapted to. Put me in the right environment and I flourish, the wrong one, and I easily get exhausted and overwhelmed.
I don’t disclose my diagnosis to everyone, but when I do, I usually get told that I don’t look like I’m on the spectrum, or that I can’t be because I can make eye and talk to strangers. I say they should have seen me as a kid. I don’t feel uncomfortable around other people now partly because it’s something I’ve practiced throughout my life. I’ve had to remind myself to maintain eye when talking to someone. I knew things were a challenge for me, so I put myself into those situations over and over and over again. I learned how to communicate and how to get better at asking people questions, but it was a lot of work.
I also used to get debilitating migraines—a symptom of my extreme oversensitivity to stimulation, sound, light, and weather changes. Lately, I’ve been able to understand what triggers them better and adapt to my needs.
Now I’m involved with the Asperger / Autism Network. In the year since my diagnosis, I think the biggest thing that’s changed is this: I can give myself permission to retreat from society without judging myself for it.
Instead of feeling guilty when I don’t go out or feeling bad that I can’t do what everyone else can, I know I’m not a failure. I’m someone doing extremely well, given that I live in a culture with people who experience their environments differently than I do. I really commend myself on how far I worked to get where I am and know that what I’ve achieved, with my wellness business and beyond, is not despite my difference, but because of it.
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