The Feeling of Autism

Feb 02, 2022
Why are some features of autism discussed more than others? When I first figured out that the ADHD diagnosis I received as a child should have been an autism diagnosis, I read a lot about autism. I found a lot of information about things like sensory overload, which was very validating. I understood why my three year-old self grabbed a pair of teacups to use as ear defenders at the reception of my parents’ friends’ wedding.
 
The list of symptoms in the DSM also gave me aha moments. I understood why I was the only person I knew who alternated between arranging my record collection by artist surname with year of album release as a subcategory, and then by feeling of album, from hard/jagged to soft. On that point, my grandmother was a librarian; no prizes for guessing where the “enjoys rearranging favourite toys” feature came from!
 
Features like alexithymia (the inability to sense or describe emotions one is feeling) only showed up when I started analysing social media posts for a research project. Again, when I read the definition, I had a flood of memories surface.
‘How was school?’
‘Fine.’ I had forgotten to do my art homework for the third week running, and the teacher had given me detention.
‘How are you feeling today?’
‘...Fine.’ There isn’t a word on the feeling wheel for ‘churny in my tummy that isn’t nausea or hunger,’ so ‘fine’ was a short summary.
 
There were alexithymic memories from adulthood too. Meeting someone I liked when we met before, but this time while I was waiting tables and they were attending a function. I was so overwhelmed by uncomfortable, unnameable feelings that I spilled boiling hot gravy on them. If you ever wondered why autists find it hard to hold down a job, I have a strong suspicion it’s because we try to act normal while having churny-tummy, and spill hot gravy on the customers.
 
As I tried to create a theory of how it feels to have autism, I noticed that people on social media talked about some things more than others. Shutdowns and meltdowns and sensory overload were commonly mentioned. People talked about their chronic pain, and their stims. People rarely talked about their eating disorders, which, according to Kate Tchanturia and her colleagues, is disproportionately represented in autists. I went back and re-coded the data for ‘foreground’ and ‘background’ symptoms.
 
Pain is obvious. It’s in-your-face. You wake up in the morning and are reminded that your immune system is attacking your soft tissues as you stretch. Having a meltdown in public has very real consequences because people who witnessed it act differently towards you.
 
But how do you describe a shadow where feeling words should be? Sitting in a doctor’s office (a stressful situation at the best of times), and trying to express ‘I don’t want to get out of bed in the mornings,’ without sounding lazy feels like it’s a personal flaw, not a feature of a neurotype. The symptom prevents its own diagnosis.
 
The findings of my study can be summarised with one of those ‘autism is an iceberg’ memes. What clinicians see in practice is only a tiny part of how it feels to be autistic. If you’re able to get a diagnosis, get it so that you can access disability* services and accommodations. Then find a space where other autists gather, whether on social media or in person, and ask them about their experiences. It’s the only way to feel less alone.
 
* Just to be clear, I don’t think autism is inherently a disability. However, there are parts of the neurotypical world that make it feel like a disability. Also, the disability office is where we go to request necessities like a quiet exam room.
 
Bradon leverages his Special Interest in sport and qualitative research, coaching athletes to achieve their goals at kerbriders.com. He is a foster parent to rescue kittens, and a full-time parent to two cats and a dog who were former fosters."