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.
Thank you, I got diagnosed two years ago as well but by a different route and it did not lead to this kind of understanding right away, it’s only been in the last few months. This was very helpful and I am constantly finding how those of us who have masked and survived have so many traits. I’m reading Neuro Tribes and it is an education into our history and culture.
Thank you for taking the time to read this! I’m sorry your diagnosis wasn’t more affirming. Ah, I read NeuroTribes last year…such a long but interesting one!
This is such an awesome account of your confirmation of being Autistic. I found your post because I was looking up the features of the Autistic accent which you listed out (I can never remember it all, but I do it, too, as I’m AuDHD). I’m an assessor, and am taking notes on how Matt helped you get clarity in that process in such an affirming way. Thank you for sharing!
Thank you for sharing that! Matt has an excellent private Facebook group called Autistic Connections if you’re looking for additional support.