It’s about brain functionality and mental health, not “feeling special.”
Published on The Ascent, Apr 6, 2021
People who are autistic need to know that they are — we’re wired differently, and there’s power in learning how. Photo by Felicia Buitenwerf on Unsplash
Seven months ago, at 37 years old, I was diagnosed with autism.
What. A. Trip.
One of the many ways it’s so bizarre is discovering the bewildering reactions that some people have to the late-diagnosis community, especially on internet spaces like YouTube and TikTok.
Most of the comments tend to be positive ones from other autistic people, but it’s also common for “normal” neurotypical (NT) people to troll these posts and make disparaging comments.
In these online interactions, the motivations of the often relieved and jubilant newly diagnosed autistic person are questioned by the NT — “You’re not autistic, you’re just weird. If you don’t even seem autistic, why claim it now?”
And it’s not uncommon to see such comments even on videos that talk about dealing with trauma related to being unknowingly autistic, making it seem like they didn’t even bother to watch the video before doing the gaslighting.
These people often accuse the autistic person of just seeking attention, a reason to feel special, or something to use as an excuse.
Photo by Nadine Shaabana on Unsplash
I don’t know what to make of this behavior. There are so many people engaged in this cruel nonsense, it’s really quite sad. (They seem sad. Why else would you do that? #hurtpeoplehurtpeople.)
But mostly, it’s just mind-bogglingly messed up.
Despite my having had a decisive and thorough professional assessment, and despite it concluding I’m Level freakin’ Two autistic (not that self-diagnosis isn’t valid, it is), just reading these kinds of public exchanges led to my experiencing persistently defensive thought patterns, a kind of imposter syndrome eating away at my new—and desperately-needed—clarity.
This internalized ableism is common among the newly diagnosed, which is dangerous considering the terrifying mental health stats in the autistic community.
Plus, we’re trying to emotionally and mentally process so much already — finding out you’re actually autistic after decades of thinking you just really sucked at being normal is disorienting, to say the least.
To say a little more: discovering that you’re actually autistic after decades of trying to be NT is a complete and total mindf**k.
I had trouble sleeping for months afterward because I was plagued with painful memories from my past, slivers of trauma that finally made sense after diagnosis coming up to be reprocessed under this new lens, over and over and over and over and over and over…
It was a fragile time, to say the least. I clung to autism studies and first-person testimonials to keep some semblance of my sanity; each new piece of information clicking into my psyche, helping me understand that I’m not broken, I’m just different. Knowledge truly is power.
So, it’s really frustrating to finally find a lifeline—a sign of hope after decades of feeling like life is impossible—only to have ignorant people question its validity.
And there are all kinds of people assuming that autistic stereotypes are the full picture, that autism can be spotted with one’s eyes rather than by extensive knowledge of one’s internal processes.
This perspective is normal, which creates an abundance of toxic behavior.
It has to stop.
People need to understand what autism truly means, so that they may stop making things even harder for us—even well-intentioned people know so little about autism in adults that their comments are often persistently painful.
For example, saying “I can’t even tell, you seem normal enough, you’re cool,” isn’t a compliment—it’s an insult to the very autistic parts of me I’m not showing you, as well as my community. (Which is actually cool AF, FYI.)
To that end, here’s a little more about the journey; then I’ll share the benefits of having found my answers, at last.
From Lost to Found
Photo by Ashley Batz on Unsplash
A year ago, I was wildly disappointed with myself for being so relieved that the pandemic meant I could stop pushing myself to “get out there,” an effort that had led to a renewed eye twitch, aided by several already-established relationships that had me distraught.
Despite years of working to cultivate more authenticity, I was riddled with behaviors that, in hindsight, were clearly unconscious attempts to cover my differences and make myself more palatable; a coping technique called masking that’s common in autistic people (especially those of the so-called “female” phenotype, which can present in any gender)—but the actual effect was to make me feel misunderstood, unseen, and unheard.
And, since I was clueless as to why this was happening, I had no idea how to stop creating the same lonely results.
I was plagued by insecurity, always trying to stop mentally hand-wringing about my differentness, my loneliness; trying to answer endless questions about why I did the things I did and felt the way I felt.
Finally being diagnosed with Level Two autism was like being thrown a life preserver in a sea of soul-sucking confusion.
Why did people continuously misinterpret my words? Why did they assume things about me that are untrue? Why was I persistently underestimated? Why did they say I sit and move my body weirdly? Why was I still so tired, why couldn’t I ever keep up? Why did light and sound overwhelm me? Why did I always feel like I was making up for some unidentified shortcoming, even with strangers? Why did people have such odd reactions to me? (What did I do wrong this time?!)
Photo by Sydney Sims on Unsplash
And why did I always feel like I had to put on a show, a facade of someone less complicated than me? Less emotional, less opinionated, less open, less awkward, less neurotic. Just. Less.
And why was it so hard to stop? Why did it feel like my very safety was tied to this mask?
What the heck was my deal?!
It was literally maddening—after years of struggle and related physical ailments, my mental health finally became truly dangerous to my safety; with my being hospitalized twice because I was afraid of what I might do alone overnight when physical and mental health symptoms peaked.
Finally being diagnosed with Level Two autism was like being thrown a life preserver in a sea of soul-sucking confusion. It’s been really challenging to process, but it absolutely saved me as well.
Goodbye, self-hate. Hello, self-wisdom.
The experience of late autism diagnosis can also be compared to using the instructions and procedures for a PC your whole life, then discovering that you’ve been a Mac all along. You’re not inherently broken, you just need to do things differently for smoother performance.
There’s a learning curve, of course, but after decades of mysterious errors and malfunction; I finally have the manual to my operating system, at last, plus a community full of people navigating the same errors and malfunctions.
To quote the autistic autism researcher Jac den Houting, “I wasn’t a failed neurotypical person, I was a perfectly good autistic person.”
Benefits of Late Autism Diagnosis
Photo by Ravi Roshan on Unsplash
In an effort to help fight against the scourge of folks messing with the already stressed minds of the newly diagnosed, I’ve prepared a list of seven actual benefits of discovering your neurotype isn’t typical, but autistic.
I hope that it will help arm potential allies by describing some of the internal experiences as well as the benefits; and I also hope that it will help my fellow auties feel more secure in their autistic selves, as well as encouraging those who wonder if they might be autistic to start seriously learning about it—maybe you is and maybe you ain’t, but either way, knowing is a good thing.
A community of (quite literally) like-minded people. It’s amazing to be able to log into an online autism support group after a horrid day and be like, “Had a mega bad public meltdown due to a ridiculously loud noise and bright lights, then had to sit in a dark room and stim out with goo for hours, anyone relate?”—and not only will they relate, but they’ll probably reply with empathetic stories and memes to help cheer you up.
Tools to identify and manage adverse autism traits. Executive functioning issues used to result in my internally mean-girling myself for being “such a ditz,” but now I know that it simply means my autistic brain is getting tired (because it lives in a neurotypical world, which is tiring), and I just need to take a break, maybe go stare at something sparkly for a while (which, like the aforementioned goo, is a helpful tool called ‘stimming’). Goodbye self-hate. Hello self-wisdom.
Tools to identify and maximize positive autism traits. For example, like many auties, when my brain’s happy I can hyper-focus on a chosen task and work very quickly, for a very long time. This is especially common with special interests (SI), so finding a way to make your SI your job is maybe the ultimate maximization of positive autism traits. Other potential areas of strength to maximize: naturally thinking “outside the box,” honesty, passion, visual thinking, and unique (+ uniquely delightful) sense of humor, for starters.
Better ability to advocate for oneself. Now that I have an accurate way to describe my challenges, it’s a hell of a lot easier to explain why my needs are different and what, precisely, they are. For example, now I know that loud and/or bright things really agitate me due to my high sensory sensitivity, their ability to induce a public meltdown is because my brain’s not doing so well in recent years—and autistic meltdowns due to sensory overwhelm are very common, especially when already struggling.
Meltdowns also contribute to the incapacitating state of autistic burnout, which means not being able to depend on one’s brain. So actions taken to limit the overwhelm aren’t me being too particular, it’s protecting my neurological and mental health—so, my life—it’s not only okay to ask for what I need, it’s crucial.Less confusion. As you may have caught on with all those questions before, I was riddled with confusion before my autism diagnosis. Autism is a neurotype, basically a type of brain; so interacting with the world was very disorienting due to my thinking differently, and further so because I didn’t know that.
I had no idea why technology is the opposite of intuitive, why forms that take others a few seconds make me want to poke my eye out with the pen, why so few people seemed to “speak my language,” etc., and it all added up to me feeling like an alien, like maybe this world just wasn’t built for me. (This is a common viewpoint among autistic people.)
But now I know the latter part is actually true—that the world was indeed built for a different neurotype—those things aren’t further triggered with a lifetime of confusion, anger, and shame. It still frustrates me that we aren’t societally considered, of course; but now that I at least know what I’m frustrated about, those moments feel less…explosive, even despite my currently not being in a great neurological state.Improved confidence via self-understanding. Knowing why I am the way I am also helps worlds in the self-acceptance department. I’ve been through a lot and still have work to do, both internally and externally, but, day by day, it gets better. I find myself in fewer negative thought patterns around past failures and rejections, and more hopeful about connecting with people, with life, due to this expanded perspective of who I am and what I need.
Paradoxically, feeling more “normal.” It’s so strange that internet bullies so often bring up “you want to feel special” allegations because I actually feel way less original after spending time in the autistic community. Many of my “quirks” are actually just autism traits, and many others are expressions of such, seen displayed by other auties all the time — like doing thissssssssss, for a random example. And it’s awesome. I freakin’ love being able to log on and find thousands of people who actually speak my language, face similar challenges, and just generally get it.