Autism · Blog · Disability

An Introduction to Ability, Identity, and Me

Turquoise spoon on a lilac background with purple flowers in the bottom right corner. The words "Ability, Identity, and Me" are in the top left corner.

Ability, Identity, and Me – I Might Be Autistic

Content warning: depression, burnout, death, eating disorder

I didn’t grow up calling myself ‘disabled’. Until college, I’d never given a second thought to academic accommodations or my relationship to disability. I would have known if I were disabled, right?

As it turns out, no. I didn’t even consider the possibility that I might be autistic until a couple of years ago. So how did I not know for so long? I have a few theories.

  1. The presence of autistic traits in those who aren’t white cis boys tend to be overlooked, being left out of study after study. As a result, those around me simply didn’t know what to look for in the absence of a special interest in trains (PS: if trains are your special interest, there is nothing wrong with that!)
  2. I’ve only ever known what it’s like to be inside my own brain. While this may seem obvious, I can’t really know what it’s like to inhabit a neurotypical brain, and since this is the case, I didn’t really have anything to compare my experiences to. Therefore, things that I always thought were typical (i.e., the massive amounts of anxiety I have at all times) only come into question when someone, usually my fiancé, explains that no, most people don’t walk around in a sea of anxiety all the damn time.
  3. I am like a cat. I camouflage any issues I run into, choosing to deal with them myself rather than burden other people with them.
  4. I have awful interoception and self awareness, often resulting in me not recognizing when things are not going well for me. Please see: me telling my therapist everything is fine, then when she asks questions to prompt me, it quickly becomes clear that things are very much not fine.
  5. I could go on, but I think you get the picture.

The point is, there are several reasons I didn’t pick up on my differences throughout my childhood. There are even more reasons my teachers and parents didn’t pick up on them either.

Even though I excelled in school, when I reflect on it, I wonder how much better my mental health might have been if I’d had accommodations throughout my school years. Maybe I wouldn’t have gotten so burnt out by the time I got to college. Maybe I wouldn’t have become depressed. But the past is the past, and no amount of wondering can change what happened.

When I got to college, I was already experiencing burnout. A few months into the school year, someone I knew from high school was murdered. The news hit me hard, and my mental health started to slide further down. Although I’d made some friends, I was still 1500 miles away from the only home I’d ever known, grieving, and trying to cope with school at the same time. I started going to a counselor through my school, but I only went to one session because she told me I was depressed because I was queer, which was definitely Not Great?

After that experience, I tried to deal with everything on my own, and my mental health steadily decreased through the rest of the school year. Cue my horrible self awareness, and I’d convinced myself that I was fine by the time summer rolled around. I spent the summer almost entirely alone in a new city, which exacerbated several issues and culminated in the worst bout of my eating disorder I have experienced to date. However, at the time, I convinced myself that my excessive exercising and calorie restriction were ‘healthy’ behaviors, so I returned to school in the fall with delusions about my own health.

My mental health continued to worsen until I finally talked to my mom and found a better therapist and the right meds. At this point, I was officially diagnosed with depression and anxiety, allowing me to receive some accommodations from the Office of Disability Services. I didn’t see myself as disabled then, but I knew that receiving these accommodations would make a huge difference in my ability to continue my education.

Sometime in the second half of college, I stumbled across the Actually Autistic community on Tumblr. I saw myself in so many of the posts, but I convinced myself that I couldn’t possibly be autistic. Even so, something stuck in the back of my mind, nagging me with the thought “I might be autistic”. The thought wouldn’t go away and urged me to do more research. The more I read, the more convinced I became that I was on the spectrum; however, I didn’t want to impose on the community and had a huge fear of being viewed as attention-seeking. With time and support from my fiancé and therapist, I started feeling more and more comfortable claiming the label ‘autistic’.

Even though I felt confident in my self-diagnosis, there was a nagging feeling that I couldn’t fully claim the identity for fear of being called a fraud or attention-seeking.

Receiving a medical diagnosis is a huge privilege as we don’t live in a world of accessible care. I’m lucky enough to have received a medical diagnosis a couple months ago, and it has opened up a world of resources and care I could only imagine before. There are still people who accuse me of faking it, but now I refuse to give them any power over me with those words.

It’s been a journey, but since receiving my medical diagnosis, I’ve felt much more comfortable claiming ‘disabled’ and ‘spoonie’ as identity categories. We’re living in a world built largely by and for neurotypical and able-bodied people, and it is exhausting, but being a part of these communities makes it a little bit easier to bear. 

On a final note, if you, too, find yourself circling back to the thought “I might be autistic,” I urge you to do more research. Keep reading, talk to your doctors, find community. Maybe one day that “I might be autistic” will transform into a declaration of identity. And if it does, know that the spoonie community is here for you, waiting with open arms.