Guest Blog: When Self-discovery and Diagnosis Intertwine
Read now (7 mins) | On finding the rare dragon who encouraged me to soar to great heights
Guest Blog | by Shannon Collins
February 15, 2024
Tears dropped onto my lap as I took test after test, each one saying the same thing. “You have a strong likelihood of Autism.” In that blue light of my monitor, something clicked. A lightbulb moment of self-realization flooded me with memories of all the times I was mocked for things I thought everyone else experienced.
With this newfound awareness, I felt afraid of sharing it with people. Afraid someone would tell me they suspected it all along. Afraid folks would judge or discredit me for being self-diagnosed. Afraid I was taking up space where I shouldn’t.
I read Devon Price’s article, “My Autism Checklist,” and cried over common ground: Sound and light sensitivity; fascination with textures; social scripting; special interests; and hyperfocus.
The Autistic community is not monolithic and Autism can manifest in many different ways, but taking these online tests was validating and left me emotional, yet energized. My high scores for masking and camouflaging made sense, since much of what I was doing was internalized and oftentimes done unintentionally.
When there’s a sound or overlapping noises, it takes my focus away completely. In a loud, crowded room, I’ll look for a commiserating face to exchange glances with, only to be met with none. Eye contact is something I’ve had to train myself to mimic. Soft yellow, barely-lit rooms are my happy place. I immerse myself in work and interests. When I watch something, I have to know everything about it, scouring IMDB trivia and Twitter for facts.
I sat with excitement and hopes of discovering community. I thought that maybe in the process, I’d start to feel less broken in some of the experiences that shaped me.
To assess or not to assess
There’s unfortunately a lot of questioning around the legitimacy of self-diagnosis. While I am just one person with the lived experience of being Autistic, I don’t believe that formal diagnosis is superior. Many people don’t have any other choice but to self-diagnose. It’s common to be turned away from being assessed if you are Black, Brown, trans, gay, female, elderly, impoverished–the list goes on.
Devon Price writes how “A diagnosis doesn’t make you Autistic, just as a gender dysphoric disorder diagnosis never was what made anybody trans. Get the slip of paper if you need it and can afford it, by all means, but systems that understand us as broken should never define us.”
While I support self-identification fully, after weighing the pros and cons, I ultimately decided to move forward with a formal evaluation. I knew in my heart that I was Autistic, but I wanted to learn more through the diagnosis process. This was despite understanding that there are still flaws in the system, especially for a non-binary adult.
The decision to pursue a formal assessment came with a lot of privileges. Being able to afford it, for one. And feeling safe enough to not have to closet my identities. Trans, Autistic people often have their gender identity undermined because of their diagnosis, which can lead to the denial of access to necessary medical care and gender-affirming surgeries.
Depending on where you live, there can also be other risks, including things like: Not being able to immigrate; not being able to drive a car; not being able to foster or adopt kids; having your diagnosis used against you in a custody battle; not being able to work in certain industries; and being denied life insurance.
All that being said, I decided to not judge myself for doing what felt right for me–pursuing a formal assessment. After searching for an evaluator in the Queer Exchange Philly Facebook group, I stumbled upon a rare unicorn in someone’s comment. The commenter mentioned that the person who diagnosed them–Matt Lowry–was an LGBTQIA+ friendly, Autistic psychological evaluator with an Autistic child. They mentioned how he had a strengths-based approach and used their correct pronouns 100% of the time and throughout their diagnostic letter, which again…unicorn (or as I’ve come to realize…dragon).I emailed to ask if Matt had availability to guide me through the evaluation process. His quick response led to me soon spending our then 3-year-old’s nap time immersing myself in answering 388 questions before our first virtual interview.
The gift of validation and empowerment
In February 2022, 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 an Autism assessment with Matt.
Before I logged into our Zoom meeting, I made sure I was prepared. I saved a folder with dozens of online test result screenshots and a document of my Autistic traits as “proof” that I was ready 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 call, Matt told me I was displaying incredibly Autistic behavior. My non-speaking communication was filled with stims. I was told I had a “perfect, Autistic accent”– “monotone, disjointed, pedantic speech with tangential conversation and difficulty breathing.”
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 our shared love for The Labyrinth. Matt mentioned how he was painting a Hoggle figurine from The Labyrinth, because, of course he was.
He virtually toured me around his house, showing me how we can organize our worlds in a way that maximizes our energy. His wireless remotes for gaming were hung efficiently on the wall. In the kitchen, pots, pans, and mugs were also stored with racks and holders to help with sensory sensitivities.
For some reason (perhaps the YouTube videos I watched in preparation to tame expectation sensitivity), I had been nervous about getting grilled on my math skills, or lack thereof, during the assessment. Instead, I was learning about Matt’s lab-created crystals and we were infodumping over our mutual appreciation for Kermit’s “Rainbow Connection.”
My PAI (Personality Assessment Inventory) 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, a weakened immune system, etc). Masking is a survival strategy that comes at a cost for many Autistic people. For me, it was partially learned behavior after being called ableist slurs like “spaz” by those around me, into my adulthood.
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 adult.
At the end of our call, Matt shared with me the best ways to contact him in order of accessibility. This simple act of transparency and clear communication affected the way I now care for clients and myself. After my diagnosis (which as it turns out, yes of course, I’m Autistic!), I joined his private Facebook group, Autistic Connections. It quickly became a place where I experienced the newness of being validated in my neurodivergence and feeling seen. A lifelong process of unmasking. One week after my diagnosis, I took to social media to share how Matt warned me I might start acting a lot more Autistic. I wanted to explain what that looked like and how I was unmasking day-to-day.
Unmasking at the time included things like: Changing my outfit immediately if it made me uncomfortable; rocking without as much shame at my standing desk during meetings; wearing my new Loop earplugs to avoid sensory overload; being kinder to myself when dealing with small talk or phone calls; embracing fidgets; letting myself make less eye contact; feeling seen while scrolling through the #ActuallyAutistic hashtag on Tiktok; ordering a weighted blanket; and asking for support.
I continued to immerse myself in content created by Autistics. I found community online and in-person with other late-diagnosed Autistic people. I discovered that the trans to Autistic pipeline (and vice versa) was a bit more common than I had realized. Research has shown that Autistic people are 3 to 6 times more likely to be “gender diverse” than allistic people.
Now just two years after my diagnosis with Matt, I am still more and more curious about how my brain works, with an ADHD assessment on the way. My own unmasking continues to evolve, with my privileges affording me the ability to unveil my identities in my personal and professional life. I never could have predicted how far I would come after that initial aha moment. Self-discovery in the midst of a pandemic has led to me better supporting my children, family, friends, clients, and most importantly, myself.
Reframing 39 years of my life through the lens of Autism and queerness helped me realize I was never really broken. Making connections with fellow Autistic people has only reinforced what I wish I knew all along–that I’m already whole.
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Guest Author Bio:
Shannon Collins has been aiming to photograph joy as resistance for 14 years as the owner of Shannon Collins Photography. As a nonbinary, queer, Autistic, and Disabled person, Shannon has been educating others during their journey of self-discovery. Shannon also donates their time as the co-founder and co-host of Rainbow Connections–a monthly, virtual meetup for LGBTQIA+ kids and allies (K-5), in partnership with a local library.
Shannon lives in the Philadelphia suburbs with their partner and two children.
Where to find Shannon Collins:
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