When You’re Autistic, But Don’t “Seem” Like It

Looks can be deceiving…there’s so much people don’t know.

TW: Suicidal ideation.

What comes to mind when you think of an autistic person? The movie Rain Man? Someone who loves to talk about bugs? A child hitting his head against the wall during a raging meltdown?

You probably don’t picture someone like me; a 37-year-old female who’s been described using words like “perky,” who’s organized an extensive amount of fundraising efforts and events, who’s had some career success, someone who largely “seems normal.” So, when someone like that, someone like me, winds up being diagnosed with Level 2 autism; there are some who are dubious, especially those unaware of autism updates in the Diagnostic and Statistical Manual of Mental Disorders, which redefined the already-misunderstood syndrome.

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Credit: Levianta on tumblr

These doubtful folks also cannot see the things undiagnosed autistic adults go through, the times I quite resemble that raging child (but worse, tbh), and the circumstances that build up to it. And they don’t know the chaos it causes, how it can lead to loss of income, shelter, and relationships:

They don’t know that in addition to being a way to control my social environment, planning fundraising events were my special interest; something I engaged in therapeutically, but compulsively. They don’t know that even a decade post-planning, the idea of running a charity event’s silent auction still makes my hands sweat because names and numbers are like Teflon to my brain. They don’t know having problems with executive function isn’t the same thing as “being ditzy,” and they don’t know it isn’t the same thing as not paying attention, either. (I care, far far too much.) They don’t know that I felt like an outsider at my own events, or that I’d get extremely drunk afterwards because my body was vibrating wrong and my mind wouldn’t stop obsessing over each interaction.

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(Credit: Levianta on tumblr, edited for internalized ableism by Deborah Kallikak)

They don’t know that while the motivations for my efforts were pure of heart, my enjoyment was largely a façade — one indicative of how I’ve approached life in general, trying to hide the weird complicated iceberg of who I am by showing just the teensy lil’ sparkling bit. They also don’t know that this methodpretending to “be normal” all the time, started exploding, to my (often extreme) harm, as soon as I put on that mask.

And they don’t know the price of “seeming normal.” They don’t know about the eating disorders, or about the night I was sent to the mental ward for my safety at 19, the night the list of suicide “warning signs” started looking like a list of announcements. They don’t know that I had my first mental break later that year, 2002; at one point going out dressed weirdly and finally behaving however I wanted, feeling free as a bird, as if my mind had been repressed its entire life and finally demanded a break from the pressure. And they don’t know about the other mental hospital stays, where I kept posting to make sure people knew I was going to be okay, even as I planned and wished for life to cease with every fiber of my being — feeling that since I’d tried everything and was still failing, death was simply the most logical solution.

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Another way to categorize defining traits. (Credit: C.L. Lynch)

They don’t know I’ve lived in seven different cities since high school, desperate for somewhere that felt safe to be the whole me. They don’t know how many times I’ve tried to live abroad, hoping I’d be perceived as less “off” if I were a foreigner. They don’t know about all of the work problems I’ve had; all the whispering, the cocked heads, the strange comments, the constant confusion and misunderstandings. They don’t know that fluorescent lights make it hard for me to think, as does hearing others’ conversations; or that air conditioning can truly send me over the edge, just like uncomfortable shoes. And they don’t know that my brain can have a much harder time cooperating if I have an aversion to the task at hand, that building pressure while doing it makes me feel like I’m going to explode. They don’t know that getting energetically overwhelmed to the point of neural malfunction doesn’t mean someone is lazy.

They don’t know my thoughts often happen all at once, examining an idea from all over, reviewing what I know and have experienced, then finally puzzling it together; which makes it difficult to verbalize a prompt reply, especially since it doesn’t really happen in language but in…impressions? I am constantly struggling to make my actual point understood, failing, and giving up. I’m not just misunderstood in a “they don’t get me” way — I, like other autistics, am consistently, miserably, misinterpreted.

They also don’t know that this is made worse by a coping method I’ve employed when no thoughts feel safe to say: asking questions. They don’t know that I’ve probably made many past friends simply because I often subconsciously, but continually, encourage people to talk; which they like at first, but that it doesn’t tend to work out well for me in the end. (It’s hard to be seen when you hide.) And they don’t know that when I listen for too long it makes my core quake and my strength deplete like I might fall out of my body, even when I’m authentically enjoying the connection. Which I very often am, my curiosity is wonderfully palpable — but after a certain point, my brain gets overwhelmed and kuputs, this is not a choice.

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They don’t know that seeming “normal” requires filtering my natural expression to the point of feeling like a robot, that my smile and positivity may be for their comfort; so I don’t overwhelm them with the intensity of what’s actually happening inside me, so they don’t take it personally. Other times, I’m afraid I’ll be rejected if I don’t “shine.” (Or, reasons I’m not even consciously privy to; the defensive mind is one complicated beast.)

They don’t know that sometimes I “seem so chill” because, like many auties, it can take days to figure out how I actually feel about an event; that offenses I brush off in the moment can later lead to a perilous state. And since the frustrated energy behind it has been building up for decades, it’s too combustible to be received by the source — so that pent-up energy has nowhere to go, even therapists haven’t seemed to want to deal with it. So, the pressure keeps building. And building.

They don’t know how hard it is to function when I feel like that, especially since the motions my body asks to release the pressure with (called stims), are considered “too weird,” a sight likely to leave one perceived as unemployable. They don’t know that’s why I used to growl loudly all the time, a behavior I’m not sure how I got away with for so long. They don’t know that suppressing it is when the self-harm started, using my long nails to tear into my skin during a meltdown; causing a quick, but bizarrely soothing, rush of calm.

They don’t know the shame that pours over me when I’ve accidentally touched the broken skin, reminding me of my weakness, and of how self-destructive I can be. They don’t know about the much darker times; the plans I’ve made to leave this world, how close it’s come, nor how many times. And they don’t know that even though it keeps trying to kill me, I authentically love life, so these experiences are like being taken over by a dark and terrifying stranger.

Beyond that, they don’t know my mother chose her death, so it’s also a minefield of childhood trauma.

Coming out #ActuallyAutistic

They don’t know that since my late-May autism revelation, I’ve spent most nights awake with traumatic memories crashing into me; all the experiences that resulted in chipping away at my identity in shameful chunks, eventually leaving just tits and a smile. They don’t know how I clamored with coming out at all, how I debated if advocating for myself was worth the seeming likelihood of being societally dubbed “undateable.”

They don’t know how it felt to finally figure out why I am the way I am, to feel like I finally have clarity, some hope — after all the moves, the mental wards, the homelessness, the loneliness — just to have acquaintances decide that they know more than the professional who spent hours diagnosing me. (It must be noted that due to lack of access to professionals with up-to-date knowledge/experience diagnosing adults, resorting to self-diagnosis is a regularity in the community.)

They don’t know how horrifying it was to realize that there are people who won’t believe my diagnosis simply because of “how I seem” to them; without knowing me, without even bothering to ask one single question. They don’t know their not understanding actually makes autistic situations much worse — with some even asserting their ignorance somehow means we shouldn’t be in need of societal support. And, worse than apathy, they don’t know how terrifying it is to discover that there are people who are actively against people like me finding answers (please read).

They don’t know that after years of struggling to find an income I can actually perform, it was lost to the pandemic — or that Unemployment Insurance is months late paying, and just isn’t responding. They don’t know I haven’t been able to make rent since June and literally cannot, will not, survive being homeless again. They don’t know that this is probably a pretty “normal” state of affairs for autistic adults right now; that we’re already 2.5 times more likely to die early, and when things are dicey for society at large…they’re always more dangerous for those already vulnerable.

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And they don’t know how it felt when, while dealing with all of that; a stranger shared my coming-out post, lied about a lack of professional diagnosis, then publicly proclaimed me a fake during perhaps the most vulnerable time of my life. They don’t know that a few days after that public bullying, bolstered by private interactions, I went into my second mental break — this time much more intense, and for much longer. I was on my own and cannot remember much of it, but it started after an especially heartbreaking denial of emotional support, when it felt like there were literal explosions going off in my brain; then my body started violently convulsing, which happened sporadically throughout the break. (Yes, I’m trying to see a neurologist.)

They don’t know I thought I was wandering through an afterlife, rather than through LA-county cities full of very alive, potentially dangerous, strangers (whom I was not at all shy about interacting with). The coming days brought a run-in with police, a night in the hospital, and hundreds of borrowed dollars in impound fees — but I know the grim truth is that I’m lucky not to be imprisoned, or worse.

They don’t know that the little girl who was called cruel names due to oddities (like preferring to wear only purple dresses, how horrifying) — did not stop her wide array of natural expressions so easily, not even if she made it easy on the adults in her world. That if a child acts “nice” in front of you, but then “destroys her bedroom every night, except for the time we hid a video camera in her room,” it’s more than a fucking anecdote.

Somehow, they don’t seem to know that kids grow up, and that adulthood lasts a very very long time.

In Conclusion

People who share their autism stories online aren’t trying to prove their autism to the oddly skeptical; we are communicating with people who are like us, trying to provide and receive tools while creating community for those of us who feel like we aren’t made for this world, human beings who desperately need ways to survive within it.

So, to those weirdly suspicious of the neurodiversity community — inadvertently or not, your attitudes are helping to kill people like me. Please, for the love of all that is good, quit making it about you. Please, please, just let us be.

And for those who’d like to help:

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