Grieving After An Autism Diagnosis
I spent three thousand taxpayer dollars and six weeks getting a piece of paper that says I have autism and ADHD. Now, I wish I could roll back the clock and pretend it never happened.
I started to wonder whether I was autistic during the pandemic. Like many, I started using TikTok and was almost immediately railroaded into post after post suggesting I was autistic if I engaged in X, Y, and Z common behaviours. Like many, I was curious: why would I, Ashley Seward, Normal Human, get stuck on the autistic side of a social media algorithm? Academic that I am, I wanted more information, so I took an online test for autism. Then, I took another, and another. I eventually took the RAADS-R, a test meant for adults as a limited screening tool, and scored 144 - well above the 65 score threshold for neurotypicals. I took the same test again a week later and scored 142. At this point, I started to self-evaluate.
I’ve always felt I was different. I prefer things - games, music, food, puzzles - to people. I get exhausted around bright lights and loud noises, and I let friends slip away because I don’t reach out to them. I get so focused on activities that interest me that I forget to eat, drink, or stretch. I don’t wear makeup or jewelry, have a limited wardrobe, and I struggle with personal hygiene because I don’t like certain sensations on my face and body. I did well in school, but I felt as if my grades didn’t match my understanding of the material. I got Bs on essays I thought I had aced. I have friendships, but I always thought there was a secret level of social interaction that I just didn’t have access to. I figured that my issues were just adolescent quirks that would vanish once I grew up - once I figured out I was transgender, I figured it would all go away once I transitioned.
Things got better in university. I excelled at my music undergraduate - won tons of scholarship awards, got fantastic grades, and wrote some music that was very well-received. By my fourth year, I was getting paid to write music for professors and got accepted to UBC for my master’s with a full ride. Then, the pandemic hit, and everything I relied on for emotional stability - routines, social relationships, activities I enjoyed, opportunities I was looking forward to - vanished overnight. It was in this vortex, devoid of my supports, that I underwent three transition-related surgeries, one of which required a two-week stay in a hospital out of province. It was in this vortex that I moved to a new city in a different province where the only person I knew was my prospective graduate supervisor. It was in this vortex that everything fell apart. I got lost.
I won’t go into the rock-bottom I reached after my Master’s. I’d rather fast-forward to now, the summer of 2024 where I’m preparing to move once again for my doctorate and I have my shiny diagnosis - diagnoses, actually. I’ve got the golden ticket to a kind of support that I’ve never had before: support that could let me finally feel accepted by another human being. It could mean an end to the meltdowns and shutdowns, the nights spent crawling up the stairs to my apartment because I couldn’t walk after work. The problem is, accepting an autism diagnosis means accepting that I’ll never be normal. The things that are different about me will never be fixed, and I have proof now that trying to hide them was extremely unhealthy. If I accept this diagnosis, I must also accept that I will need support for the rest of my life. I must also accept that my dreams of meeting a neurotypical standard simply aren’t attainable. I’ve always wanted to be the best (or, at least in or above the 90th percentile) at the things I care about, and this diagnosis puts that in question. Will I be able to find success as a professional composer, out there in the world?
I don’t know what my future will look like. I honestly don’t really want to think about it right now. I don’t know whether writing this out for all to see will help, or whether it will just be yet another embarrassing post I make before deleting it. I want to be normal; to fit in; to excel. Before, I could do really well at the things I’m best at and scrape by at everything else. I could hold on, knuckles whitening, gritting my teeth while working overtime to analyze and interpret the facial expression, vocal tone, and body language of every hiring manager or potential colleague while puppetting my own in a shabby simulacrum of neurotypical social presentation. I could cut myself at work, pressing a scissor blade against my forearm while downing half-bottles of acetaminophen to maintain a brand-friendly customer service persona, then collapse on the floor unable to move or speak for hours. I could write a great piece, receive warm, heartfelt congratulations from dozens of colleagues, then go home and hang myself.
Some part of me wants to go back to the maladaptive coping. At least then I’d have plausible deniability; a vague, procrastinatory sense that I could somehow simply “get better” through sheer force of will. But that can’t happen now. Pandora’s box has been opened. We can never go back.