Unmasking Autism Diary #15: What Happens After an Adult Autism Diagnosis
Read now (5 mins) | Belonging: from inside Angela's Autistic mind
August 14, 2023
Dear Diary,
Since my diagnosis I have never lied about or hidden the fact I’m Autistic. I have also never terribly struggled with imposter syndrome about my diagnosis (though I’ve had moments of doubt for sure), which I know many late diagnosed autistics do. That said, I did feel for the first 8-9 years of being diagnosed that it was a private medical condition that I shouldn’t bother others with. It was my issue. My problem. My medical failing.
As someone who drew the short straw in the brain distribution game, I had to take my lumps and learn to compensate as best as I could. In other words, the problem was mine and therefore the solution needed to be mine. Kind of like an ingrown toenail:
Your body produces this problem.
You need to shut up and deal with it.
Get help from a medical professional if you need, but no one wants to hear about your toenail.
I mean, no one is expecting you to lie about it or anything, but it’s just kinda gross and weird to talk about all the time.
This view of autism, on the one hand, still makes sense to me. Like, I understand the thinking behind it, but it has such horrifying long-term consequences.
The big shift for me over the last couple years was beginning to see my Autism as a social and cultural difference first and to treat the medical issues and needs I have separately. This can be a little hard to grok, but just as a thought experiment starting point, think about same-sex attraction. Homosexuality in history goes back to the ancient Greeks. At times in history it was criminalized, but in 1952 homosexuality was cited by the American Psychiatric Association as a mental illness. When same sex attraction was categorized as a medical condition the game changed. Gay people were “broken” and needed to be “fixed” with treatment and pharmaceuticals. Of course, all of these attempted fixes of who you just are as a human would then create symptoms like anxiety, depression, OCD, and stress-related disease. These co-occurring conditions are not because you are gay, but because you keep being told you need to fix this unfixable thing about yourself.
Imagine you were told being blue-eyed was a disease that needed treatment. Daily self-administered shots in your cornea, pills that made you feel sick and foggy you had to take every day, and the risk that, if at any point you said, “There is nothing wrong with blue eyes, I just want to live my life,” you would lose your job, housing, friends, and family.
When we think of Autism as a medical condition first, we are pathologizing it, like we pathologized homosexuality. But thanks to the hard work of the gay rights movement, we have the research, the data, and the science to prove homosexuality is a normal variation of our species like eye color or arm length that doesn’t need to be fixed. That is what has changed in the autism research in the last ten years. We now know it’s a brain difference not a mental illness or disease. We have the proof, and for our own survival, we are demanding to be treated as whole, not broken—different, not less.
Now, does that mean there are no Gay people with depression, anxiety, or OCD? Obviously, of course not, but those conditions are not created or exacerbated by homosexuality, but they can be exacerbated and created by pathologizing homosexuality.
This is what changed for me: I switched my view of being Autistic as a disorder I had that I needed to mitigate, to a culture and a heritage that I could celebrate (while simultaneously, of course, treating any actual health challenges or needs I had whether they were related to autism or not).
I switched my language from, “I have autism,” to, “I am Autistic.” That one verb to noun change is so magical because my autism is more like my eye color than heart disease. If I had heart disease I would not BE Heart Disease. Being Autistic is like being Italian-American. It affects all aspects of who I am, but it doesn’t determine who I am.
Autism is a valid neurotype, not an error in my genetics, but simply a different type of brain which is in the minority and has been medicalized by people with a more commonly occurring brain structure.
The way I show up now—unmasked, informed, and unapologetic—changes how I see myself and how people react to me. I no longer spend much time around people who don’t know I’m Autistic. I advocate for my needs more vocally and without shame or guilt. I don’t keep social contacts that insist I keep quiet about my autism to make other people more comfortable. If people have questions, I am prepared to answer them. I know my needs enough now that I can make really clear requests about what will and won’t work for me.
The magic of this is that many —though not all—of the co-occurring symptoms of Autism actually went away taking this approach. For instance, because I was trying to minimize or cover up what my Autism looked like, I was always running internally and didn’t recognize how stressed and exhausted I was. I would often have emotional breakdowns or just fall asleep in public when I was in a stressful situation. This almost never happens anymore.
Unmasking for me came in layers and over time. More research—and research by people who are #ActuallyAutistic —made a big difference. Being exposed to people who didn’t see autism as something that needed to be fixed also helped me evolve.
A major suicidal-depression that came from Autistic Burnout made me realize that fully accepting my autism as a part of myself was the only way to survive.
It took me a decade to integrate the meaning of my diagnosis so when I meet someone who has just learned or begun to accept their brain is divergent from the norm, I tell them to slow down and take time to let it sink in. If you have been pretending your whole life to be a duck and feeling really shitty about your bad performance in that role, finding out you are a swan is exciting, but you still have a lot of work to do to understand the swan world and to let go of all the things you loved about duck life.
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Public note for those reading my diary…
AuCT: Autistic-Centered Therapy is the best tool I have found for learning about your swan-ness. If that’s you, don’t hesitate to reach out for a recommendation.
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The Dear Diary Project is a public journaling project where I’m publicly sharing my diary entries as part of my annual goals. No harm is intended by these posts. My goal is to gain clarity for myself and hopefully help others, especially autistic adults, who are trying to make sense of the communications challenges we face.
“Masking is a common coping mechanism in which Autistic people hide their identifiably Autistic traits in order to fit in with societal norms, adopting a superficial personality at the expense of their mental health. This can include suppressing harmless stims, papering over communication challenges by presenting as unassuming and mild-mannered, and forcing themselves into situations that cause severe anxiety, all so they aren’t seen as needy or “odd.”
—Unmasking Autism, Dr. Devon Price
*Background note: Most people only have a vague (often, highly stereotyped) version of autism in their minds and believe that autistic children need (traumatic) ABA therapy to "overcome" their disability and appear "normal." After receiving an autism diagnosis in her thirties, Dr. Angela Lauria realized that she too had been mostly unaware of what it means to be Autistic. Like so many people, she started her journey by first gathering information and resources from the omnipresent (and problematic) Autism Speaks, but eventually moved away from the 'autism community' in favor of the 'Autistic community,' where she found kinship with other Autistic individuals and learned to let go of pathologizing language like 'autism spectrum disorder' and 'Asperger's Syndrome.' This autism blog (and her autism podcast, "The Autistic Culture Podcast") is meant to share her lived-experience insights to support others on a similar journey of diagnosis, understanding, and community. Embrace Autism--differences are not deficits.