Notes From my Autism Diagnosis
As a Valentine’s Day gift to myself on day four of our family having COVID, I set aside a few hours of self-care in the form of getting an Autism evaluation via telehealth.
I struggled with whether a formal evaluation was right for me, but ultimately decided it was something I wanted. *Self-diagnosis is beyond valid and much of this was my own internalized ableism at play. I’m very privileged to have access to such resources, as the process cost $2k.
My psychological evaluator, Matt Lowry, is Autistic and highly experienced with diagnosing non-binary adults. A month before the evaluation, I took an online test with 388 questions (the PAI). I saved a folder with dozens of online test result screenshots and a document of autistic traits as “proof” that I was prepared to present (I’ve included it here, in case it creates a similar light bulb moment for anyone).
It turns out, I didn’t need it. Six minutes into our Zoom, Matt told me I was displaying incredibly Autistic behavior. My non-verbal communication was filled with stims. I was told I had a “perfect Autistic accent”–”monotone, disjointed, pedantic speech with tangential conversation and difficulty breathing.”
My Autistic traits
The evaluation–a clinical interview and the big autism test (the ADOS)–wasn’t what I expected. I shared a brief life history and we reviewed Matt’s Autism spectrum chart in relation to my behaviors. We chatted about Autism’s role in Ghostbusters: Afterlife, MythBusters, Rick and Morty, and The Labyrinth.
My PAI showed that I’m a highly traumatized Autistic, so we talked about the ways masking has impacted my health over the years (high blood pressure, anxiety, hypothyroidism, weakened immune system, etc). Masking is a survival strategy that comes at a cost for many Autistic people (the average life expectancy of an Autistic person is 38). It’s learned behavior after being called a “spaz” by many around me.
Matt encouraged me to empower myself as an Autistic person, while acknowledging that I never actually needed his diagnosis. I wasn’t expecting the electric, emotional release that came with validation from a fellow Autistic. And I know it’s just the beginning.