Thriving Autist’s also got its own twitter and insta ❤
I’m a late-identified autist who’s also got the ADHD, so I’m AuDHD—but here you’ll mostly find articles exploring being autistic and issues that surround it: trying to survive in society made for (allistic) folks with different wiring, how society + allies can better empower us to find our place, and generally trying to figure out how to thrive as my whole neurodivergent ass self and help neurokin do the same.
You can find all of these over at my Medium account, but here’s the sans-paywall access:
- The Progressive: The Outdated Language of Autism ‘Awareness’ Month
- How an Emotional Support Dog Helps This AuDHD’r
- The Progressive: The Long Road to #StoptheShock
- 7 Benefits of My Late Autism Diagnosis
- Autistic people don’t need shock aversives, we need vocal allies.
- It’s Been Two Years Since My Autism Revelations
- Professional Communication Tips for NDs
- Autistic People Are Still Being Tortured in This U.S. Facility
- Here’s What Autism Looks Like
- How the Peacock De-Haired the Autist
- What is Autistic Burnout?
- 31 Things Autistic Adults Wish NTs Knew
- Autism Allies — We Need You, Now
- 7 Must-Know Autism Terms for Autists and Allies
- Help Autistic People by Tossing Out These 6 Toxic Norms
- Why Many Autistics are Offended by Elon Musk’s Use of “Aspergers”
- My 9-Year Authenticity Mission Led to an Autism Diagnosis
- Autism Acceptance > Autism “Awareness”
- This World Autism Awareness Day, Give Us Acceptance Instead
- The Autistic Representation Problem
- Autism can only become a superpower if it’s empowered.
- I Am More Than My Malfunctioning Brain And Body
- Autistic Burnout from the Inside
- Stop Making Autistic People Mask
- What it’s Like to Learn You’re Autistic at 37
- When You’re Autistic But Don’t “Seem” Like It
The Outdated Language of Autism ‘Awareness’ Month
A shift among advocates reflects the view that autism is simply another neurotype—not a disease to be cured.
BY MEG HARTLEY
APRIL 28, 2023
While Autism Awareness Month may have started with good intentions, every April my autism support groups are flooded with upset reactions to Autism Awareness posts. While these posts mean well, because society’s conditioned people to beware of autism, they usually come out infantilizing, condescending, or even dehumanizing, advocating for the end of autism…which they don’t seem to realize means the end of autistic people.
In the decades since 1970, when the Autism Society first established Autism Awareness Week (which then evolved into Month), we’ve learned a lot about being autistic, and it’s important that the language we use reflects this. The Autism Society recently shifted away from using the term “awareness” by renaming the event Autism Acceptance Month. Unfortunately, the public really hasn’t caught on.
This may not seem like a big deal, but for people who are autistic, language matters. Fifty years of promoting “Autism Awareness Month” creates “real barriers for Autistics to be seen as more than a stereotype,” writes researcher Maddy Dever in the Canadian Journal of Autism Equity. We should instead, she says, aim to move from “words and thoughts that cause exclusion and segregation to words that promote inclusion and accommodation. Changing our language changes the way we think, changing the way we think, changes the way we act, and our actions can bring about change that will allow Autistics to thrive.”
Autism is a descriptor for neurological differences that result in our experiencing and processing the world differently. These differences cause us to react, think, and behave in alternative ways. Autism is a neurotype—not a disease. But the “awareness” framework can make people think it is. When people advocate for “curing” autism, they’re actually rooting for “no more autistic people.” The conversation can quickly devolve into one about eradicating us, and that’s not okay.
There are many meaningful ways to integrate us into society, but first society has got to desist in trying to get us to “stop acting weird.”
An autistic life is worthy of living. Even if it did make physiological sense, I wouldn’t want to be cured of being autistic—I want to be cured of the things that cause autistic burnout and our terrifying suicide rates. There are many meaningful ways to integrate us into society, but first society has got to desist in trying to get us to “stop acting weird.”
When society has such homogenized expectations of “normal,” it results in people either being excluded or encouraged to hide their differentness. With autistic people, this behavior of “masking” can result in autistic burnout, leading to an increase in problems including extreme sensory sensitivities, communication troubles, meltdowns, and debilitating exhaustion—all of which, ironically, can result in the inability to mask or, for many, participate in society at all.
These are just some of the reasons why the autistic community advocates for an acceptance over awareness frame: it emphasizes accepting that we’re different, learning what autism really is, and letting us be us.
The switch from ‘awareness’ to ‘acceptance’ is part of a larger neurodiversity movement that views brain differences as not inherently lacking or wrong—just different. And beyond that, it’s part of the social model of disability, which “identifies systemic barriers, derogatory attitudes, and social exclusion, which make it difficult or impossible for disabled people to attain their valued functionings.” It’s time for society to make room for more of humanity, and switching to Autism Acceptance Month is a part of that.
Additionally, the current popular verbiage has other problematic aspects. Autism Awareness Month may have started out with intentions of truly helping autistic people, but it’s become the biggest income booster for the autism industrial complex—a litany of groups like Autism Speaks that claim to help autistic people, but are known in the community for doing the opposite.
There is another way: It’s time to actually listen to autistic people about what we need to better manage our easily-overwhelmed but also uniquely equipped brains.
Here are some tips to get you started on being a part of our societal transition to autism acceptance:
Know that different doesn’t mean worse. Don’t dismiss or judge people for needing sensory gear (headphones, tinted glasses, etc.), stimming (repeated movements, fidgeting, etc.), needing mobility assistance (cane, walker, etc.), requiring different ways of communicating (nonverbal, requiring text, etc.), or other differences people often incorrectly associate with lack of intellect or competence.
Take disability accommodations seriously. Similarly, when someone needs a disability accommodation, that doesn’t mean they “think they’re special,” it means they have different needs. The ADA may require employers to provide reasonable accommodation in the workplace, but in practice it’s much trickier, with pushback from bosses and rolled eyes from coworkers. It’s hard enough to have different needs, and it’s harder still to ask for accommodations, so for the love of god, don’t make it even worse—and call out anyone who does.
Don’t get offended when someone asks why. Some of us need to know why in order to do the best job we can. Autism acceptance advocate Callum Stephen summed it up impeccably: “One of the best things you can do for autistic people is explaining why. Why you want us to do a thing (X way); why something isn’t possible; why you’re upset with us; etc. We may not intuit the ‘why,’ and knowing helps us to contextualize and act with purpose and direction.”
Ask questions instead of assuming the worst. One of the biggest myths around autism is that we lack empathy, but to us it looks like non-autistic people often lack empathy. Autistic sociologist and autism researcher Damian Milton described this issue as the “double empathy problem,” which proposes that “the social and communication difficulties present in autistic people when socializing with non-autistic people are at least partly due to a lack of mutual understanding between autistic people and non-autistic people—i.e., most autistic people lack understanding of non-autistic people whereas most non-autistic people lack understanding of autistic people.” Autistic people are often inherently on different wavelengths, so to speak, so more communication is often needed to accomplish mutual understanding.
Don’t assume you know what autism “looks” like; that’s not a thing. While some of us move with tics like twitching or blinking, lots of us have been taught to mask, and may seem “normal” or different in a way that’s hard to put your finger on. As we say in the community, “If you’ve met one autistic person, you’ve met one autistic person.”
Speak up when you hear outdated language. Allies are crucial in helping change to really take root, there’s immense power in speaking up for individuals not given a sufficient voice in society—so, please, correct people who’re still saying “awareness” and fill them in on why the shift is needed.
Ask the government to adopt “acceptance” terminology. Make a public comment to the Interagency Autism Coordinating Committee and encourage them to revise the outdated and harmful “awareness” terminology and make Autism Acceptance Month official in the United States.
We need everyone to know they should not write us off. In addition to desperately needing understanding and support, we have a lot to contribute—and that’s exactly what acceptance will help us do.
How an Emotional Support Dog Helps This AuDHD’r
My support pup saved me from an isolated-vacuum of a lifestyle, could one help you too?
Originally posted on Artfully Autistic Feb 25
I’ve wanted a dog of my own for decades, but after years and years of isolation due to chronic illnesses and autistic burnout I started to feel like I needed one. I needed to not cry alone, a cheerful influence, a persistent reminder of life’s little joys.
My therapist agreed it’d be helpful, but I didn’t get the official paperwork done as my landlord didn’t mind my pup-having-aspiration — if I wanted to move somewhere that didn’t allow dogs or needed a travel exception I’d need the paperwork to formally make her an Emotional Support Animal, but for now, my needs are met without it. (Therapy and Service Animals additionally require special training but have more accompaniment privileges.)
It wasn’t easy to find my darling doggo: I needed an adult dog under 10 pounds, who’s healthy, fully potty trained, and rarely barks, as well as being cheery and snuggly. It took over a month of autistically hyper-focusing on communicating with 30+ shelters about dogs that might make the cut (and filling out SO MANY mind-draining applications), but, eventually, I found my sweet lil’ pound pup, Foxy Queen. We met on December 12th, 2020, she’d lost a leg while homeless and had also just gotten spayed, so was half-bald with far too many stitches — but she was still a wiggly ball of joy from the moment I saw her. The shelter volunteer passed her into my arms, she immediately stuck her little nose into my elbow, I melted, then the volunteer said, “We seem to have a match.”
There was a physical adjustment period as far as walking her every day (#spoonie), the financial increase hasn’t been a non-issue, and on bad days I do struggle to care for us both — it’s not a decision to make lightly — but, for me, having an emotional support dog is absolutely worth it.
HERE ARE 10 WAYS MY FOXY SUPPORTS ME:
- Gets Me Outside Daily: The lights, sounds, and unexpected nature of leaving the house can make it feel like my brain is in a freakin’ trash compactor, but problematic genetic mutations make it so I can’t get vitamin D from supplements, I’ve gotta get it from the actual sun. And, in addition to vit D deficiency causing depression, not leaving a studio apartment for days at a time it’s depressing in and of itself, which is how I was living before my Foxy. Our daily walks have enabled me to appreciate the annual changes in the nature of the neighborhood, establish positive (but comfortably-distant) relations with neighbors, and helped me to feel more connected to my surroundings at large.
- Contribution and Meaning: Being able to contribute so little (compared to what I was doing before becoming homebound) is very painful to me, I find meaning in being part of something, in working towards something, in helping and taking care — so it’s depressing to spend the vast majority of my time just trying to take care of me, getting my basic don’t-get-worse exercises and routines done, dealing with social services issues, doctors and prescriptions, etc. It can make me feel like my life is pointless, like I’m pointless. Writing definitely helps, but I can’t do it very often (#autisticburnout), so taking care of my lil’ tripawd angel girl gives me desperately-needed relief in that department.
- Less Lonely: In addition to autistic burnout I’m dealing with fibromyalgia, both of which limit my mobility and ability to be outside my home, so I’ve had to be in brain-necessary isolation the vast majority of the time since October of 2015. It’s necessary, but also gets seriously difficult to be so alone, especially while in pain and dealing with insanely frustrating brain functionality issues. It’s still hard, and of course I still get lonely sometimes, but my sweet and hilarious little cuddlebug helps keep me feeling grounded and connected.
- More Aware: When you’re just alone with yourself for years on end, it can be easy to lose sight of abrasive behaviors that might’ve accumulated whilst unchecked. My Foxy’s reactions helped me to see that I’d redirected many healthy but “weird” stims (hand-shaking/flapping, rocking, etc.) into unhelpful ones — like yelling in frustration at uncooperative inanimate objects — which actually work up my nervous system instead of calming it, while also causing a needless ruckus for anyone who could hear me. Now I’m no longer in a seeming-vacuum of aloneness and a little “wtf?” head tilt or startled jump reminds me there’s better ways to regulate.
- Meltdown Warning: My gal’s not trained to sense upset emotions, but many animals just get this kinda stuff. She often tells me I’m heading towards a meltdown before I even realize I’m getting dysregulated. I’ll be troopin’ along, thinking I’m frustrated butwhateveritsfineicandoit — then I get interrupted with a little paw on my knee and a sweet face looking at me like, “Chill your roll, or it’ll roll you,” and her reminder (usually) sucks me into the moment, causing awareness of my nervous system, so I may do whatever I need to do so my brain doesn’t blow.
- Cry Comfort: Sometimes what’s needed is a good cry, other times I cry not due to neural dysregulation, but because it’s really fucking hard to support yourself while disabled, and it can all just be too much. And when I cry, my baby lifts her tiny paw to my heart and licks my tears. It’s the sweetest thing I’ve known since being comforted by my mother.
- Routine Help: I’m AuDHD, so I very much need routine but also struggle to maintain one due to issues like distraction, time blindness, and need for novelty. But dogs need, need, routine or you’ve got potty problems on your hands, (errr, in your carpet). And she’s so good at keeping track of time. She reminds me when it’s time to go out, time to eat(s), time to turn off TV, move to the bed, etc. — I don’t always listen to her about-me reminders, sometimes I just need that one more show or whatever, but her keeping me aware in the first place is extremely helpful. Bye-bye endless time vacuum!
- She’s Stimmy: Sensory stimulation, stimming, is a way for autistic people to regulate our unique nervous systems — and my baby helps me in a few ways there. Firstly, her fur’s bonkers soft, so snuggles are oh-so soothing. Her weight on my body is also stimmily-soothing, helping me to stay calm while I get things done at my computer or cozying up on top of my belly when I lie down. She’s also just so cute! Watching her be her adorable hilarious self is a visual stim all on its own.
- Dopamine Booster: ADHD is essentially a dopamine deficiency, so it’s awesome that my pup helps there. In addition to the already-mentioned sunlight and added exercise of her walk, which boost dopamine, it’s also naturally increased via snuggles. Additionally, while novelty can bring challenges to my autistic-self, it also activates the dopamine system, and she’s just the right amount of unpredictable. Plus she’s funny, and laughing is a booster as well.
- She just freakin’ makes me smile.
Did I miss anything? If you have an emotional support pet, how does it help you?
The Long Road to #StoptheShock
FOR TWO DECADES, A MASSACHUSETTS SCHOOL HAS BEEN UNDER FIRE FOR TORTURING DISABLED STUDENTS WITH SHOCK DEVICES. NOW, ACTIVIST EFFORTS TO END THE PRACTICE MAY SOON PAY OFF.
Originally published by The Progressive
BY MEG HARTLEY
FEBRUARY 1, 2023, 6:00 AM
In the mid-90s, around the age of eleven, I saw a television show on PBS about old asylums that would do horrifying things to people society deemed insane. It scared me, especially since it didn’t clarify what happened to those same people in modern times.
I asked my mother, who took some time before she answered. While waiting for her response, my mind raced with early memories I tried to suppress: frequent teasing, adults concerned about how I didn’t “act normal” and had atypicality in developmental milestones.
“Well, there’s definitely still improvements to make,” my mom finally said, “but those awful torture-like treatments don’t happen to people with mental health issues anymore.”
While she was right about most things, she was sadly wrong about this.
To this day, there are Americans being subjected to a treatment that the United Nations Special Rapporteur on Torture has officially condemned as torture at the Judge Rotenberg Center (JRC), a residential school for students with disabilities in Canton, Massachusetts.
Patients at the facility with “developmental disabilities, emotional disorders, and autistic-like behaviors” are being shocked using an extreme form of aversive therapy. This procedure sends strong electric shocks throughout an individual’s body with a device called a graduated electronic decelerator (GED). It is often used when patients exhibit unwanted behavior — which, according to those who have undergone the treatment — pretty much means not acting “normal,” a standard that the center defines loosely.
In fact, the movement against JRC, known online as #StopTheShock, gained traction in 2012, when partial footage of a Black autistic teenager named Andre McCollins being shocked thirty-one times in seven hours was made public. McCollins was allegedly forced to undergo the treatment for refusing to take off his jacket, while all but two of the shocks were for “tensing up” or “screaming.” JRC claims to only use GEDs in extreme cases, but, again, that deeply conflicts with the experiences reported by many people who have had to stay there.
Additionally, the only defense that JRC offers is claiming the GED is necessary to prevent self-injurious behavior (SIB) as well as aggression (AG) and saying that they have the most difficult cases in that regard. But the FDA strongly disagrees. The FDA’s 2020 inspection reported, “25,000 is a reliable, conservative estimate for the number of the more extreme cases of SIB and AB in the United States. We have no evidence establishing that, of those, JRC receives the most extreme or refractory cases,” additionally stating, “JRC has not established that its residents on whom ESDs [electric stimulation devices] are used are refractory to other treatments, and the evidence shows that state-of-the-art alternatives have generally been successful even for the most difficult cases.” JRC doesn’t need to be shocking these already-struggling people, it’s just not necessary.
You can take action by tweeting @FDADeviceInfo and @US_FDA including the following message: “pass the rule banning the electric skin shock device without delay, #StopTheShock.”
To give you an idea of just how strong the shocks are, JRC’s strongest device, the GED-4 — a type of electric stimulation device that is not approved by the Food and Drug Administration — shocks patients at 90 mA, which is nine times higher than a cattle prod and around twenty-two times stronger than an electric fence.
The fight to end the torture happening at Judge Rotenberg has been going on for nearly two decades, but JRC’s influence and funding has been an obstacle. In 2020, they received $84,108,326 in grants and other government funding. That same year, the FDA attempted to ban ESDs at large, stating the agency “has determined that these devices present an unreasonable and substantial risk of illness or injury,” which could include “depression, PTSD, anxiety, fear, panic, substitution of other negative behaviors, worsening of underlying symptoms, and learned helplessness.”
But JRC reacted by suing the FDA, and in July of 2021 the ban was overturned by the U.S. Court of Appeals for the D.C. Circuit, stating, “a use-specific” ban “interferes with a practitioner’s authority by restricting the available range of devices through regulatory action.”
But, due to the efforts of community activists, most vocally the Autistic Self Advocacy Network (ASAN), that may soon change — the recently passed omnibus bill includes a provision that gives the FDA the right to ban contingent electric shocks used for behavior modification. Now the agency just needs to know that the public is against this torture and in support of the #StopTheShock movement.
We’d like to think that we’ve moved on from the days of treating people who can’t squeeze into a homogenized idea of “normal” as less than human, but in far too many cases, we really haven’t. As a neurodivergent person who’s had public autistic meltdowns — something that can get you put in places like JRC — this is a terrifying example. So, please, for the sake of the millions of neurodivergent people in this country, and especially those at JRC right now, please bust out that phone and start putting pressure on the FDA.
You can take action by tweeting @FDADeviceInfo and @US_FDA including the following message: “pass the rule banning the electric skin shock device without delay, #StopTheShock.”
Again, big thanks to The Progressive for funding and originally publishing!
7 Benefits of My Late Autism Diagnosis
It’s about brain functionality and mental health, not “feeling special.”
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.
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
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?!)
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
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.
Autistic people don’t need shock aversives, we need vocal allies.
THE GOVERNMENT HAS ONE MORE CHANCE TO STOP THE TORTURE THIS YEAR — BUT THEY NEED PRESSURING, NOW.
There is a cruel practice happening to autistic and otherwise disabled humans in Massachusetts that the UN has very literally deemed torture, attempting to use painful electric shock devices in order to control their behavior. This week, Congress can stop this inhumane treatment by essentially re-including a ban in the end-of-year omnibus bill — but we need allies to put the pressure on them, now. There is no excuse for this kind of treatment, but theirs is claiming to prevent aggressive and/or self-injurious behavior, which has been found factually inaccurate and just makes no damn sense in the first place. Here’s the full scoop:
Being autistic means a lot of things. (A whole spectrum even.) But one thing that most autists have in common is that our differently-wired brains can get overwhelmed by stimuli typical brains handle just fine. It’s intensely unpleasant — for me, it’s akin to being strapped too-tightly to a rickety rollercoaster I really don’t want to be on while a bomb continuously explodes in my brain — so when that neurological overwhelm happens, there’s naturally a breaking point.
How that breaking point manifests will look different in different autists, but for some of us that overwhelm can lead to aggressive and/or self-injurious behavior. I am one.
After decades of dealing with sporadic but uncontrollable episodes, I’ve devised ways to help avoid them: now when I feel that warning of an oncoming meltdown (which, for me, used to usually end in self-harm) I know I need to get away from any surrounding people with as little interaction as possible, make the lighting soothing, take meds, put on lofi hip hop, get some therapy dog love, call my safe people, cry it out, and floor = good. If I still feel that overwhelming urge to tear at my skin, I try to discharge and interrupt the painfully overwhelming energy by scratching the side of my rough couch (it can take it), and/or screaming into pillows.
Why am I telling you all of this? Because something that sure fucking isn’t listed is someone remotely shocking my body without my consent. But that’s exactly what’s happening at the Judge Rotenberg Center (JRC) in Canton, Massachusetts, where they claim to prevent unwanted behaviors like the aforementioned self-harm in people with ‘developmental disabilities, emotional disorders, and autistic-like behaviors’ by essentially creating the harm themselves.
They use an extreme form of aversive therapy via a device called Graduated Electronic Decelerator (GED), which sends strong electric shocks throughout their bodies when they exhibit unwanted behavior — like autistic meltdowns, and the overwhelm behaviors that precede them. To give you an idea of just how strong the shocks are, JRC’s strongest device, the GED-4, a type of Electric Stimulation Device (ESD) that isn’t approved by the FDA, shocks patients at 90 mA: nine times higher than a cattle prod (10 mA), and a whopping 22.5 times stronger than an electric fence (4 mA). In 2013, the UN Special Rapporteur on Torture condemned the practice, saying it “violates the UN Convention Against Torture and other international standards.”
It’s been very officially, internationally, declared torture — yet it still continues in the United States. The fight to get these kinds of devices banned in the US has been going on for decades (known online as #StopTheShock), but so far lawmakers haven’t made it happen.
In recent developments, the FDA tried to ban ESDs at large in 2020 stating, “FDA has determined that these devices present an unreasonable and substantial risk of illness or injury,” specifying, “ESDs present a number of psychological risks including depression, PTSD, anxiety, fear, panic, substitution of other negative behaviors, worsening of underlying symptoms, and learned helplessness; and the devices present the physical risks of pain, skin burns, and tissue damage,” also stating, “ESDs have been associated with additional risks such as suicidality, chronic stress, acute stress disorder, neuropathy, withdrawal, nightmares, flashbacks of panic and rage, hypervigilance, insensitivity to fatigue or pain, changes in sleep patterns, loss of interest, difficulty concentrating, and injuries from falling.” (So…decidedly not preventing harm.)
And guess what? Taxpayers are paying for all this increased danger and harm, and it’s not cheap; according to tax documents, in 2020 the Judge Rotenberg Center was paid $84,108,326 in grants and funding by our government. That’s money that’s not going towards actually figuring out how to better help autists successfully find our place in society, and we’re really struggling.
ASAN is asking autistic and disability allies to call your members of Congresss and ask them to include a ban on electric shock torture in the omnibus bill, ASAN’s provided a script for the call with a Proxy system for those unable to phone due to disability. So easy, so quick.
Again, the only defense the Judge Rotenberg Center (JRC) has for being the only place still using these inhumane devices is claiming the GED (a type of ESD) helps prevent aforedescribed self-injurious-behavior (SIB) as well as aggression (AG) and that they have the most difficult cases in that regard. However, the FDA’s 2020 inspection found otherwise, “25,000 is a reliable, conservative estimate for the number of the more extreme cases of SIB and AB in the United States. We have no evidence establishing that, of those, JRC receives the most extreme or refractory cases,” additionally stating, “JRC has not established that its residents on whom ESDs are used are refractory to other treatments, and the evidence shows that state-of-the-art alternatives have generally been successful even for the most difficult cases.”
It makes no sense. They have no excuse.
You’d think that’d be it, medieval torture treatment over, but not in our legal system. Efforts by JRC lobbyists resulted in the ban getting struck down on technical grounds in July of 2021, with new disheartening developments this fall. On September 28th, The Autistic Self Advocacy Network (a valued resource in the autist community), reported, “The bipartisan effort to #StopTheShock was included in the House version of the FDASLA Act, and was added to the Senate bill following a committee hearing. But yesterday, Congressional leadership announced that the final bill would be a ‘clean’ bill that drops many important provisions, including the ban.”
Fortunately, there’s another chance, this month: the end-of-the-year omnibus bill. And you can help.
ASAN is asking autistic and disability allies to call your members of Congress and ask them to include a ban on electric shock torture in the omnibus bill, ASAN’s provided a script for the call with a Proxy system for those unable to phone due to disability. So easy, so quick.
Please call as soon as possible and once you’ve engaged, please encourage others to do so as well by sharing advocacy info using #StopTheShock. I’ve truly only touched on the harms caused by the Judge Rotenberg Center. It‘s terrifying that this is legal in my country and horrific that they continue to stay in business (let alone receive millions in government funding). They need to be completely shut down, it’s criminal that it hasn’t happened already, but the very least the government can do is re-include the ban on the use of electric shock for behavior modification in the omnibus bill.
Autistic people don’t need shock aversives, we need vocal allies. Thank you for supporting us by calling your congress members today to demand that these devices are banned.
Autistic Adults and Autistic Parents Need To Come Together
There’s a knowledge gap, and it needs to be filled.
There’s a divide of understanding within the autistic community, one that can get quite contentious online: autistic adults and parents of autistic children. I think a root of the problem is society telling parents they’re responsible for raising kids in a manner conducive to doing things in neurotypical ways, the “normal” way, and parents at large face a lot of homogenized expectations and judgment for noncompliance.
But when a child has different neurological wiring, a different neurotype, normal expectations and activities can actually overwhelm their nervous system, making it even more difficult to do things like process language and verbalize. And autists are expected just act like we’re not experiencing this kind of agitating or even painful neurological overwhelm when we are, something that leads to all kinds of trouble, like autistic meltdowns, which are terrifying. During meltdowns, sometimes it truly feels like my brain is going to catch on fire from all the misfiring and pressure, then finally just explode.
They. HURT. And we don’t choose them. And we don’t get to decide when they end.
These kinds of internal autistic experiences have been treated as if they’re irrelevant, as if autists just have behavioral issues and need to learn how to “act normal,” something that makes us even more vulnerable, and we’re already unnecessarily dying decades before our peers.
Bridging the knowledge gaps between us and allistic (not-autistic) folks needs to happen and it won’t without help from parents of autistic children — the hard truth is that you’re the ones society listens to, not us, and we’re dying from the societal apathy. We need parent allies to really listen and to help our voices be heard.
Here are 10 takes on this gap from other autistic adults, starting with a couple of autists who are also parents of autistic kiddos:
- “I fall into both of these categories. I wish that there was more understanding of the different communication styles rather than people jumping down each other’s throats all of the time. I wish that functioning labels would be done away with and that the parents would stop speaking for us and listen to us instead.” A.M.
- “I am autistic and so are my children. I’d like parents of autistics to understand that they need to pay attention to what is going on and how their child is interpreting the experiences around them. As much as they can at least. They can’t understand truly but they can watch out for say, how a child might be handling someone having a crush on them or trying to interact with them in some intimate way.
And then they need to not approach their autistic kid with morals and judgments the kid may very well not understand. I was raised in the church and things just never made sense, yet when my parents would address whatever the issue was, they’d do it through the filter of something that already didn’t logically make sense to me. Your kid won’t understand what you want or mean if you aren’t speaking a language they understand. They may have to set aside what they think they ‘know’ and approach things differently, potentially without some things (like religion) being the primary measuring stick of a moral code.” S.L.
- “That when they talk bad about my autism, they are talking bad about me personally, because I don’t see myself as separate from my autism.” A.F.
- “That [autistic adults] often do really understand what it’s like to be an autistic child and we can help them if they listen to us. We can provide insight from an autistic perspective that they may not even consider as a possibility. Yes, parents often do know best, but when your child has a different neurology than you, why not ask the people who share that neurology for help? After all, we want what’s absolutely best for our future neuro-kin generation and will fiercely do whatever it takes to protect them. […]
Saying things like “my child is more severe than you are” or “you can’t speak for my child because you’re not the same” isn’t helpful. We understand their experience even if it’s not the same as ours. And if you’re saying that me (a mostly speaking autistic person) isn’t the same as your nonspeaking autistic, you’re right. I don’t know that experience because I grew up speaking using my mouth words. But then why not connect with other nonspeaking autistics who do know and understand your child from that perspective? There’s so many types of autistic people in the world; you’re bound to find one that has a similar experience to your child.” M.S.
- “They are not the ones with autism and that they have to help that person develop a system/ anything to move through life. I just feel like I was told how to feel most of my life and now I’m on my own idk how to process my actual feelings now that there’s ppl who want to listen. 🤷🏽♀️🤷🏽♀️” K.N
- “Understanding that we aren’t doing ‘bad things’ for the sake of being malicious 99% of the time. I remember having meltdowns and being told I was ‘ungrateful’ and throwing a ‘tantrum’ when the reality was it was like something else had taken over me and turned me into an anger monster. I was never in control until I came down from it and I was blamed for ruining outings and embarrassing my parents. Same thing with not being able to or not wanting to do a task or go to an event. They took this as me being defiant. The reality is they never listened to what I was actually saying when I said no and instead framed me as a defiant child. Talking to your autistic kid on a more peer level will help you communicate better and they will tell you what they need. You just have to listen and learn your child’s language.” S.S.
- “That it’s often a journey to understand our own feelings and symptoms. We don’t always have the answers, but that doesn’t mean others should speak for us.” C.T.H.
- “What bugs me the most is the idea that something is ‘wrong’ with their child. This whole grieving how they expected their child to turn out or how they wanted their life to be or their kids life to be. Disabilities are not bad, don’t need to be fixed, your child doesn’t need you grieving the loss of the abled child you wanted. Secondly, stop exploiting them on social media to ‘help other parents’ or ‘spread awareness’. Thirdly, I wish they would realize that societal rules are completely made up. Your kid doesn’t need to speak, use fake pleasantries, have fun at amusement parks etc to be loved, respected, or to enjoy life.” C.H.
- “That everyone is different. I really wish that was emphasized more. There is no ‘stereotype’, everyone still has their own personality.” S.G.
- “That we aren’t unintelligent just because we can’t/don’t communicate the same way. I’ve noticed the same problem within the deaf/HoH community; if you can’t or don’t speak (or can’t speak well) people don’t take you seriously or assume you must not understand normal speech. I can understand you just fine even when I don’t know how to respond or am unable to.” B.N.
It’s Been Two Years Since My Autism Revelations
I’ve yet to reach thriving, but I’m sure working on it.
Next month will be two years since I was diagnosed with autism at 37 years old. I’d spent the prior three months going through the self-diagnosis process, every night I was plagued with the truth of experiences I’d reframed with delusional optimism, lied to myself about, or full-out repressed altogether. They haunted me all night long, smashing into my mind with heartbreaking clarity:
They weren’t really laughing with me. That’s what they meant by “you’re…funny,” without a smile. When they said I was brave for doing things that seemed normal to me, it was probably because they knew I’d get made fun of for it. Accepting the struggles at work and school where people accused me of not trying, there were real — physiological — reasons for it, but feeling powerless because I can’t redo my life and choose a more realistic and sustainable path for my neurological needs, and now my brain’s been run into the ground.
Daytimes were better though. I’d cry through meditation most mornings, shaking off the night, but by the end of my mandatory wellness stuffs that help lower fibromyalgia pain, I was amped to get back into learning about my brain, talking to other autistic people about our brains and brain issues, and starting to write about the things I’d learned.
It felt wonderful to finally know I wasn’t just someone who sucked at being human, I’m actually just of a different neurotype — my brain and nervous system have different needs, and I needed to start taking them seriously.
But the thing is, I don’t live in a society that’s allowed me to do so.
The matter of how to pay for one’s life is a huge problem in the autistic community, with nearly 80% of us unemployed. I was able to semi-skate by in my 20s, somehow graduating from college and getting an office job around the time my student loans became due. But the jobs never lasted, sometimes due to the economy and sometimes because of me, struggling to the point of autistic burnout and/or fibromyalgia flares (which I thought were a weirdly frequent flu) so having to quit or being let go.
There was so much needless brain drainage in Office-world. In order to be taken seriously, I had to sit straight with my feet on the ground (gah! musthavelegsup!), I couldn’t defend myself from the brutal 60* AC with a blanket, had to wear uncomfortable clothing, sit under painful fluorescent lights, and try to focus on menial tasks despite someone eating freakin’ microwaved fish in the next cubicle, someone else playing pop music just loud enough for me to hear, and the constant chatter of small talk betwixt the cubes.
And don’t even think of wearing headphones. Those are anti-social.
But it was much better than retail and service, where the audio cacophony was even worse and there was soooo much more talking about nothing — plus, numbers mix up in my head, I have very little working memory, and I confuse faces and names! (I tried bartending and trying to keep track of whose tab was whose nearly sent me into tears. Cocktail waitressing was also a nightmare.) Those experiences are probably what pushed me to finish college, the hope of a less draining way to earn.*
* These are my particular autistic struggles, other autists with different spiky skill sets are probably fabulous at these things.
Anyways, a job loss in 2020 is what sent my negative autistic traits so high that I finally had to accept that being a Highly Sensitive Person definitely didn’t cover this shit.
The publication I was writing for lost an investor due to COVID, which at least meant that I qualified for unemployment despite technically being a freelancer. But that process was a maddening struggle (it was like 5 months to get the first payment) and all of my neighbors seemed to have lost work too, everyone in my crowded block was suddenly home all the time, often playing music at “fuck this shit” levels.
Sensory sensitivities skyrocketed and meltdowns became regular, sending me into desperation for answers that led to my autism revelations, then Level 2 diagnosis on August 10th, 2020. (Self-diagnosis is totally acceptable in the community, but I felt desperate for proof and was lucky to get an affordable-ish referral.) It was a bittersweet confirmation, a long list of what are essentially faults in our society, things I’d tried to hide my whole life. My assessor was shocked I’d gone so long without a diagnosis, which makes me wonder if I ever did pass as “normal,” or if people found me to be “off” all along.
But it was also incredibly validating. I’m not “off,” I am autistic and have millions of neurokin! And with clinical reasons for why I am the way I am, I hoped for more understanding and real connection in longstanding relationships once I told people the news. Instead, coming out as autistic largely brought the opposite. While there were some wonderfully accepting people, it was also a time when I finally got it into my head that people I thought I was close to for decades, family even, weren’t ever going to see me as one of them. They’d given up on me, full-stop.
The personal rejection combined with online bullying, continued auditory harassment, and old-fashioned “make the naive person do cringe shit just because she will” teasing led to a complete mental breakdown later that month. Burnout got worse after that. I’d have encouraging months where I felt like I was coming out of it, but in early 2021 I started experiencing nonverbal days, sometimes my brain was too exhausted to even think. When it was really bad I felt like I was getting sucked into myself and might not come back. It was terrifying.
I had a few encouraging months, but stress and trauma overwhelmed me again I had one more mental break last summer, which was absolutely soul-crushing and left me with a head injury that busted a hole into my wall. After that, my functionality was worse than it’d ever been, I couldn’t even make simple phone calls or figure out my Roku.
I thank the Universes that unemployment benefits, COVID rental relief funds, and the generosity of friends and strangers helped me get through the worst of times. Finally accepting that I’d lost people from my life over the last couple of years seemed to give me the room to open up to more supportive people I didn’t know all that well, just a couple of friends (three now, two long-distance) — but the routine connection and emotional support have helped more than all the therapists I’ve seen combined.
In late 2021, I finally had enough functionality to do something besides write about autism and started applying to the plethora of work-from-home positions that’d become available since the pandemic. I thought, finally a way to work without all the needless environmental drainage! Though I’m very grateful for the freelance work I’ve gotten, it hasn’t been a stable income and I hoped for a shot at benefits, a living wage salary, and some security.
But after a few months and so many cover letters I’ve literally cried about it (many times), I realized the proverbial fish weren’t biting so decided to examine my online presence. I’d spent years freelance writing through the stressful process of trying to get disability benefits, and I put out some very emotionally raw work, as well as writing all about my autistic experiences here with my full name — it’s work that I’m proud of, work that I know helped people because they took the time to tell me so. But, as a friend gently reminded me, that stuff can also scare employers off.
I knew they were right, and I felt silly for not realizing sooner, but as I took down and/or anonymized my work I felt like I was erasing the person I’d finally allowed myself to grow into. It was an emotional thing for me. The need for security is real though. I don’t have support (disability paid ~2 of the 7 years I’ve been homebound ill, and most of it went to debt), so I need to pay to live somehow. You gotta do what you gotta do.
Unfortunately, after greying out my internet presence, I only hooked one fish and it got loose after the second round in the hiring process. A while later I did wind up with a freelance gig, ironically at an organization that serves disabled kiddos, referred by someone who knew I’m autistic.
I was so excited but it wasn’t at all what I thought it would be and quickly turned into a communication disaster. I’m used to freelance content writing being like, “here’s the title, keywords, and word rate — go for it!” but this was completely different, it was like filling out a form, something that makes my brain go berserker. Very little analytical thinking, lots of filling in blanks, following directions, endless emails, and interviewing people with questions I didn’t get to write.
It was very typical of my office experiences, sans the smelly lunches, and I failed miserably; everything that must be time-saving for their other writers only added to mine, and asking for clarification led to my supervisor seeming to think I was needy, so I asked less, and eventually they took the essays before I could even finish them — two hours from completion to me, I’d finally gotten to the easy part (writing!) but I imagine finishing must have taken them much longer. It seemed ridiculous, more so after I got an email that contradicted every reassurance I’d been offered when expressing concerns in Zoom meetings. It felt like I was thrown under the bus before I even got where I was going.
In a way, I’m glad that it wasn’t a normal freelance gig because I needed to (re)learn that limit — traditional work situations just don’t work for me, even from home, and especially not now. Still, I’ve been floundering since. When I started the gig I was definitely still in burnout, far from the bushy-tailed optimistic finally-feeling-like-me-again person I was when I started my job hunt, but I was hanging in there okay.
Since then, not so much.
I’m struggling with my brain functionality, in the literal dark most of the time due to sensory issues — and now it’s been two years of autistic burnout. Is this my life now? Am I ever going to get better? At least better enough to pay for life and like maybe go to lunch with a friend on occasion?
And I still feel all greyed-out, both internally and in my online expression. Those articles and accounts are still gone or anon’d, and I’m not sure I should put my name back on them. People aren’t as good, kind, and open-minded as I presumed. At large, it seems we’re kind of horrible. My naivety remains cruelly intact, but I’ve turned into a cynic at the same time and I don’t know what to do with myself.
The times I feel strongest and most hopeful are when I decide that advocacy writing for autism acceptance, chronic illness awareness, and social change are my best shot. I’ve always had a book in me and started writing it seven years ago, besides a handful of not-good pitches and my last article here, it’s been about all I can work on lately; executive malfunction’s been intense, my brain’s like “special interest or nap, bitch, I’m just too fucking tired.”
Oh, but my mind. (It’s a strange thing to have your neurology disagree with your mind, but as a reader of ArtfullyAutistic, you’re probably all too familiar with the conundrum.) My mind says advocacy pays dookie and isolates you from societal acceptance/success, but maybe that’s just what it’s been conditioned to think. And if it were true, maybe changing times means it’s not anymore. I have found several literary agents specifically seeking neurodivergent writers, so that helps modulate Cynic Mind a bit.
Plus, I’ve been trying to squeeze myself into the norm for decades to utter failure and complete body-mind-spirit breakdown. I’m tired of throwing myself against that wall, it’s fucking broken me and I can’t break much more without shattering completely.
Writing this has helped, but I still don’t have a clear plan for what to do. I do need to start “coloring myself back in” so to speak. Looking back at old writing and social media posts, even ones where I was homeless, there was a sparkle to my words and in my eyes. I’m not sure where it’s gone, or if it will come back. I know it had to do with hope though.
I’ve just got to take it day by day. Hard thing by hard thing. Small joy by small joy.
And, eventually, I’ll find that sparkle again and get back to writing in a more “let’s take on the world!” fashion — but for now, there’s my painfully honest take on my first two years of autistic self-knowledge.
I’m broken, really broken. But I don’t wish to shatter.
Professional Communication Tips for NDs
A lil’ wisdom gained the hard way.
Professional communication isn’t a breeze for most people, but when it’s between a group of people who are neurotypical and you’re neurodivergent, the potential for misunderstandings and struggle get even trickier.
It can be really defeating to get through the doors that often hamper NDs and other spoonies from success — resume gaps, too many jobs, functionality limitations, etc. — just to have it all dissolve for reasons that leave you bewildered and crushed.
Entering a group of NT people who already know each other and have established professional dynamics is so overwhelmingly complicated to me, my goodness, but this post shares a few tips learned from trying to re-enter the world of professional teams after years of flying basically solo. I’m autistic and have ADHD (AuDHD), so that’s the ND perspective I’m offering — I welcome comments to add to the wisdom, from similarly wired folks as well as other neurotypes. We can’t have too much wisdom. (I also happened upon a great Twitter thread with similar aims, there’s highlights from it at the end.)
Our time and energy are precious, and wasting it on a bad professional fit, or losing a potentially good one due to miscommunication is fiercely disheartening. In hopes of someone else not learning the hard way, here are some tips on ways to avoid ill-suited situations and/or navigate the challenges of professional communication while neurodivergent.
6 Professional Communication Tips for NDs
- Know Your Needs and Limits. It’s important to be honest with ourselves about what our limits and needs are, I’m of the rosy-eyed persuasion, very prone to overestimating what I can take on sustainably health/functionality-wise. Positivity’s got a great rep, but taking on more than our systems can handle means burnout — which scarily increases disabling traits and steals access to ND perks, like autistic hyperfocus.
It’s often hard for people to admit their needs and limits, but when you’re atypical there are increased odds of pushback bc folks just don’t get it. And avoiding that potential social issue can make just pushing through the internal struggle incredibly alluring, especially if you’re desperately in need of an income, and/or insurance. However, learning the hard way can mean severe neurological punishment, so it’s important to really consider if your neurology is up to the challenge.
- Ask Interview Questions Accordingly. In addition to screening jobs before you apply, ask very specific questions during interviews to distinguish if it’s right for you. Questions pertaining to financial and health sustainability can be hard to ask, but it’s just as important for the potential employer to be honest about the actual demands and expectations of the job as it is for us to be about our limitations. Try to fight any people-pleasing urges, don’t just assume it will be fine, and make sure you have the information you need (as well as making sure you’ve presented your strengths and all that usual interview jazz).
- Masking: Ooooh, masking. I was adamantly against masking my ND traits when I first learned masking had a huge role in crushing my functionality, and while I’m still infuriated that it’s demanded of us — it really can help when navigating NT communication.
People can be judgy, and they can come to damning conclusions without even asking any questions. So, now I have a rule to never take a meeting without preparing to socially mask first, as I’ve found just taking twenty minutes on presentation (appearance) and getting in a “NT Communication Time” headspace has a positive effect on reactions and helps me people more effectively.
Howevvvver, I haven’t been masking right. Growing up, I learned how to seem likable to NTs, asking them lots of questions, being positive, agreeable, etc., but that really only works for first impressions. I wish I’d learned the important thing is to demonstrate competence and communicate effectively. (I blame the patriarchy.) Tips welcome.
- Just to Recap and Make Sure We’re On The Same Page: Take careful notes in meetings and always follow up afterward with takeaways/action confirmation emails. It’s good to have expectations in writing as NTs don’t always say what quite they mean, and autists tend to take things literally. Also, people often lie and/or omit relevant truths to their bosses to reroute blame. There’s a whole phrase for it in Office World, “throwing people under the bus.” So, yeah, document that ish.
- To Cc: or Not to Cc: If wondering if it’s okay to add an upper person/boss on email, use extreme caution. (Or maybe just don’t.) Hierarchical communication norms are a mysterious maze, full of traps that seem like common sense or courtesy. According to the Harvard Business Review, Cc’ing the boss makes co-workers trust you less, which can lead to all kinds of trouble.
- Don’t Avoid Group Channels: Office communication channels like Slack are daunting for me because group dynamics are overwhelming in any form (and there are already so many!), but also it can be hard to get the info I actually need among all the messages that aren’t related to what I’m doing — they can be very busy, messy, and excessively interruptive/distracting, or the opposite, so inactive that I don’t get the notification and miss something important. But there are often professional consequences for not having your voice present, so if there’s a next time I’ll be sure to figure out a process to make it work for me.
The day I wrote the original list for myself, the internet kindly confirmed that I’m not alone in my frustration and struggle — I happened to check Twitter right in time to catch the fabulous autist YouTuber Purple Ella start a thread asking for similar advice, here’s her post and some of my favorite answers:
@liam1408: Developed a reputation of being a technical expert, always offering an honest opinion and able to speak truth no matter to whom. But took years of learning how to cope with the politics that flew over my head, ended up ignoring it, which was the best approach.
@polymathical: I just focus on being true to myself and improving myself in the ways that are fulfilling for me. I hope to find more people that vibe with my authentic self this way. I won’t be successful in the way others are, but I will be fulfilled.
@BrandNewAutie: I think years of masking made me somewhat ok at all of that, with many gaffes of course! It’s the aftermath and long-term impacts of masking that became destructive for me. Now to an extent I can turn it on because I’m learning how and when to unmask. I hope that makes sense?
@level80: Well as a neurodivergent person, my answer is by choosing self-employed careers (been doing paid work now for around 28 years) where there is a very small percentage of work time is face to face social interaction and the rest (90%-99%) is just getting on with the job on my own.
@MarcelPotter9: Just be yourself and let your natural talents and skills shine. A good boss will want a balanced team with a good mix of people & this will enable your strengths to develop and shine. I get on so well with my boss now, I’m the only one who can tell her off! 🙂
@ADHD_Coach_UK: I cope by doing things I am passionate about, and being open about my neurotype. Set expectations from me and what can do to help me. In my young days I progresses thru sheer sweat and tears, but that only led to unrealised potential. Wish I knew back then!
Autistic People Are Still Being Tortured in This U.S. Facility
PLEASE JOIN THE #STOPTHESHOCK MOVEMENT TO HELP END THE ABUSE.
Since being diagnosed as autistic in 2020, I’ve had to do a lot of confronting my own naivete, which has been a soul-crushing aspect of the experience. Part of my rose-colored glasses being forced off was learning that autistic people are being tortured with shock devices, legally, in the US, where I live.
To be more specific, it’s happening at the Judge Rotenberg Center (JRC) in Canton, Massachusetts; where most of the students are of racial minorities as well as being from out-of-state, often brought in from New York City.
And when I describe the use of shock devices as torture, I’m not being hyperbolic — in 2013, the UN’s Special Rapporteur on Torture put out a report describing it as such, also explicitly calling on all States to ban this kind of “treatment.”
And yet, the human beings — including children — at Judge Rotenberg still have to wear graduated electronic decelerator (GED) devices that can deliver a painful shock via remote control at any time, devices that the FDA found to be capable of physical and psychological harm, including pain, burns, tissue damage, depression, fear, and aggression.
One might assume that such barbaric punishment only happens in extreme cases, but according to Time magazine that’s not the case, additionally, they’re the only ones in the world still doing it:
The facility — the only one in the world still using such tactics — has long been targeted by advocates for the disabled because of its use of electric shocks. The “treatment” is delivered by a device on the skin whenever patients break rules, even for violations as mild as talking or moving restlessly during class.
“Moving restlessly,” refers to stimming, often-involuntary movements and tics (sometimes verbal) that help us autistic people in regulating our energy — our bodies do it to better function, we need it.
And, disturbingly, there are also several other untenable rules. According to the Autistic Self Advocacy Network (ASAN), other reasons for shock include: flapping their hands, standing up without permission, swearing, not taking off coat, involuntary noises or movements made because of disability, and screaming in pain while being shocked. (Yes, you read that correctly.)
Tweet ‘FDA: Stop Autistic Torture, Ban GED Shock Devices #StopTheShock’ w/your thoughts to @FDADeviceInfo and @US_FDA every Tuesday.
Can you imagine knowing that any second a trigger, such as a random sound, could cause your autistic body to automatically react in a way that earns you a painful electric shock, which could be repeated if you dare cry out in distress?
It’s infuriating and heartbreaking that this is still happening.
Despite consistent protest against JRC and their tactics, their involvement with lobbyists enables them to legally continue this torture. This fight has been going on for literal decades, so long story short — the FDA had banned it, but last summer it was overturned by a DC Circuit Court, who refused to reconsider that court ruling in December.
Like the rest of the community, ASAN is outraged and calling on the FDA to “do whatever it takes to reinstate a ban by immediately reintroducing a new rule that would address the court’s concerns while effectively banning these devices.”
WHAT YOU CAN DO
In the coming months, the team at ASAN will be having talks with the FDA that will potentially lead to a grassroots action plan from them; but in the meantime, we can get the word out by sharing #StopTheShock info with our networks, and with some help from Twitter we can put some pressure on the FDA ourselves.
Here’s my suggestion for us to band together and get the FDA’s attention: Tweet “FDA: Stop Autistic Torture, Ban GED Shock Devices #StopTheShock” w/your thoughts to @FDADeviceInfo and @US_FDA every Tuesday, for as long as we need to.
The image above provides an example, please note that Twitter now allows scheduling. To schedule your advocacy Tweets in advance, just click on the calendar at the bottom and pick your desired Tuesday. You can switch up the message with different info on different weeks, or just copy/paste and keep hitting ’em with the same one.
Every day in the supposed “land of the free,” there are autistic humans being harmed by an organization that’s paid government funds to help them — and it has to stop. Please share information about this issue with people who wouldn’t otherwise know about it, and please help put pressure on the FDA to effectively ban the device.
Let’s make 2022 the year this torture finally ends.
Here’s What Autism Looks Like
IT’S ABOUT THE INNER.
Interest in (and acknowledgment of) the autistic adult community has gone up lately, which is wonderful. People at large are starting to understand that even though we’re different, we still have a lot to contribute; and autistic-led shows like Everything’s Gonna Be Okay are helping people to understand just how wide the spectrum can be.
But there’s still a lot of confusion in the allistic (not autistic) community about what autism “looks like,” usually in reference to how a person appears, but you really can’t tell if someone’s an Autist based on observation.
In addition to the truly infinite variety of ways autism presents, many of us have been taught to mask our traits; so knowing what’s happening inside the person, the reasons behind our behaviors, is essential to recognizing autism in someone.
Being autistic is about having different wiring, literally experiencing the world differently due to neurological differences; resulting in varied sensory perception, ways of relating to the world, and reacting to it differently.
A comic strip by Rebecca Burgess popularized a way to visualize this internal experience that’s been embraced by the autistic community. It explains that most people think that the autism spectrum is a linear thing — a spectrum from “not autistic” to “very autistic” — but it’s actually more like a color wheel of various autistic traits, with Autists affected more and less in different areas (as well as times in our life).
Here’s that one:
I later came across another very helpful expression of the concept, created by autism assessor, Matt Lowry, LPP. I particularly like the use of medical terminology and the way it succinctly elaborates on each section:
Lowry’s information describes atypicality in the following areas (some info added for further understanding, but the list isn’t exhaustive):
Interoception: Internal senses (hunger, thirst, going to the bathroom), awareness of emotions, alexithymia.
Proprioception: Sensing body position, dancing, walking on toes, spinning, dyspraxia (clumsiness), motor control.
Exteroception: Sensing the outside world, hypersensitive, hyposensitive.
Stimming: Repetitive movements and sensory seeking for energy regulation.
SpIns: Special Interests, intense research, information hunger, collections.
Executive Functioning: Hyperfocus, demand avoidance, hygiene, autistic inertia (difficulty changing tasks), working memory, verbal problem-solving.
Relationships: Rejection sensitivity, masking, bonding through SpIns, misunderstandings.
Communication: Echolalia (repeating others’ words), palilalia (repeating own words), echopraxia (repeating others’ behavior/movements), scripting, eye contact, infodumps, body language, tangential conversation.
Emotional Intensity: Meltdowns (neurologically different than “tantrums”), shutdowns, situational mutism, hyporeactivity.
Note: These things also add up to big-time fatigue (mental and physical), and often mental health issues, like anxiety, depression, and C-PTSD.
I wanted a version that allowed me to mark my trait measures so I can better communicate my internal experience, so I sketched one out that clearly segments the areas — allowing me (or any autistic person) to mark how much atypicality is presently experienced in each trait segment:
I originally made it for use with my therapist, but have also started tracking my trait levels for the purposes of both curiosity and managing problematic aspects. (I just got started, but already find it interesting that engaging in more stimming behavior — energy regulation — seems to be linked with experiencing less emotional intensity, which makes sense.)
For an autistic person to mark atypicality levels, right-click to save so it can be marked in a drawing program, or print it out and grab a marker. Consider the different aspects of each trait section and how atypical experience is at this time, then mark levels appropriately, like so:
I also imagine it’ll be useful in other realms of life when needing to explain to others how and why something is causing atypical issues. (If you’d like to have it on an object to help explain differences and accommodation needs, like a work mug, click here.) I hope it’ll help my fellow Autists feel more understood and allistic folks better understand.
(Note: Images and article reviewed and approved by Rebecca Burgess and Matt Lowry.)
How the Peacock De-Haired the Autist
My struggle with Autistic burnout left me bald.
It should have been no big deal.
I was using the toilet in my very narrow bathroom, and when I stood up my hair caught on a precariously-placed metal peacock statue. Had I been in my logical mind, I’d have simply untangled it; or, at worst, maybe I’d have had to trim those hairs.
But I wasn’t in my logical mind. I was having an autistic meltdown during a complete nervous breakdown.
I’d been unable to participate in society since 2015, when a congenital B12 deficiency nearly killed me (via nervous system demyelination). That trauma sent fibromyalgia symptoms through the roof, bringing pain that hit 8’s on the pain scale daily, body-wide. It led to homelessness and two trips to the psych ward to prevent my own suicide, but by 2020 I’d gotten myself pretty together, if insecurely so.
Unfortunately, 2020 proved capable of ripping away the life I’d painstakingly cobbled together, leading to increased neurological issues and an eventual diagnosis of Level 2 Autism, finally, after 38 years of confusion and chaos.
I nearly passed out, which could have been bad given the likely concussion; but luckily the noise of a garbage truck disturbed me, and I suddenly remembered that I own scissors, and that hair is just dead skin cells.
While I’m extremely grateful to have answers to my brain, more tools to manage it, and connection to a literally like-minded community — processing an Autism diagnosis after decades of thinking you’re just bad at being normal is a total mindfuck. Worse, people aren’t prepared to know how to react, they don’t know even what Autism in adults actually looks like and entails; it took me over a year to even find a therapist that had any experience with autistic adults, an all-too-common problem.
At first, I was able to cling to the positive aspects nonetheless, but then there was the trauma of realizing that I really am very naive, and all the realizations that followed that one: They weren’t really laughing with me. There actually are physiological reasons for my differences, and people did indeed take advantage of those differences. The teasing that I was once able to laugh off took on a new light — events like being tied up in a barn loft whilst being taunted, then left there crying for hours looked like actual emotional abuse, and not just “kids being kids.”
Additionally, I’ve been fighting a neurological disorder called Autistic burnout (clinically different from occupational burnout) since the beginning of the pandemic, meaning I’ve been dealing with extremely intensified problematic Autism traits. This means I’m unpredictably unable to verbally communicate, tolerate sunlight, navigate technology, drive, walk/move normally, and sometimes even think — which feels like a black hole is swallowing me, my consciousness, from the inside.
There are so many other aspects too, it’s my freakin’ brain. It runs everything.
Trying to deal with it alone led to a mental break last summer, not long after the diagnosis. After that scary event, I spent this whole year trying to get out of the extremely increased symptoms and general neurological hell that is Autistic burnout.
Unfortunately, it hasn’t been a successful mission.
The always-out Southern California sun feels like fire ants and its brightness makes my head feel like it’ll explode, verbal communication outside of my “safe group” often leads to autistic meltdowns, my executive malfunction and sensory sensitivity issues are off the charts, and in the months leading up this summer’s breakdown I had several neighbors who seemed amused by pushing me into meltdowns — which are terrifying, dangerous, and make the burnout so much worse.
All this while in near-complete isolation, especially since the pandemic.
Additionally, not long before the tangling, I learned that shock treatment — something deemed torture by the UN — is being done on autistic people, in my country, the United States.
It broke my heart and further shattered my mind. Add on heartbreaking realizations about my past, resurfacing repressed memories, and a brain that’s been completely fried — and you should have a solid idea of where my vibes were at when my hair caught on that statue.
I did not react calmly, I freaked the fuck out.
The statue immediately caught onto my metal shower hooks, along with much more of my hair. I sobbed and yelled as I struggled to get free, my mind torturing me in a completely different way. I don’t know how long it took to free myself from the hooks, but it felt like it took hours. After I finally did, I carried the statue above my head and exhaustedly fell onto my bed, forgetting it had netting all around it.
The statue caught on the netting and another battle ensued. After standing on the bed to get some leverage, the statue caught fabric elsewhere and sent me flying backward, hitting the back of my head so hard the drywall cracked and now has a head-shaped dent that’s nearly a hole. I eventually ripped the netting from its hooks and lied down — the statue, netting, and everything else that joined, still on my head, with the statue’s prongs painfully pressing into my scalp and threatening to break the skin on my skull, it’d already left puncture wounds, now scars, on my arm.
I nearly passed out, which could have been bad given the likely concussion; but luckily the noise of a garbage truck disturbed me, and I suddenly remembered that I own scissors, and that hair is just dead skin cells.
The statue was attached in multiple places around my skull, right up to the scalp, I remember feeling the cold blade of the scissors against it as I chopped off the hair that’d taken me years and years to grow out. (Three months later, I can still hear the sound.) Projectile vomiting started not long after that, then I just lied in bed for days, totally and completely out of it.
The first couple of months afterward were terrifying.
Nearly anything, and certainly anyone, could send me into a meltdown or a panic attack — I had so many of the latter that hooks started blocking my vision, and I feared that I’d have more seizures, as they’d happened a week before this whole episode started. I cried at the drop of a hat, and since my brain wasn’t functioning, I was dropping fucking everything.
It’s now been a little over three months, but the back of my head sometimes still aches and I’m just as in burnout as I was before. I’ve been committed to a wellness morning routine for years, and I’m still doing it, but many mornings I burst out sobbing during my meditation, it’s just all so much, and it’s been so long.
But I’m grateful to have a support system, even if it’s mostly long-distance, who fundraised to keep homelessness at bay for the next couple of months anyway and keep me talking often enough to feel at least semi-human.
Then there’s the whole freakin’ now I’m hairless thing.
For me, my long hair had been a symbol of healing, as I’d finally been able to grow it out after resolving several health issues — it was a persistent sign that I’m healing from the inside out, a reminder that the rest of me will get there too. It was otherwise pretty pointless as I’ve been in isolation for the vast majority of my time since late 2015, but I was attached to my tresses nonetheless. Silly as it is, they’d been a comfort to me during this very long crisis.
The first few weeks were hard in that aspect, looking in the mirror and seeing my bareass scalp was shocking and disorienting, but those surface-level worries were also a distraction from the more terrifying and heart-wrenching thoughts spinning in my head.
I’ve since adjusted to my new look, but continue to struggle otherwise. I spend a lot of time trying not to feel furious at the fact that this debacle could have been entirely prevented with a couple of timely diagnoses, but instead, a freakin’ B12 deficiency nearly killed me and undiagnosed autism led to complete physical and mental burnout.
I feel like decades of my life were stolen from me by a system that cares about profits over patient health, a system that just shrugs about why autism diagnoses are primarily given to white males; leaving far too many unbeknownst autists living decades of our wondering why we’re so different and trying like hell to pretend to be whatever the heck “normal” is.
It’s not fair. And not enough people are trying to change things. It’s daunting.
But life goes on. All I can do is continue to walk the tightrope between doing and moving enough to keep fibro, depression, and life chaos at bay; and doing too much, thereby falling further into burnout, and starting the whole recovery over again. (Yet again.) Good vibes appreciated.
Writing this helped. Thanks for reading. ❤
What is Autistic Burnout?
When an autistic brain gets pushed too far, it pushes back.
October 26, 2021
Being autistic is a mixed bag. While I love and am grateful for many of my autistic traits, there are many aspects that are just plain symptoms; like sensory sensitivities, exhaustion, and executive dysfunction that limit my ability to participate in life.
And sometimes those unwanted autistic bits, the symptoms, shoot to completely unworkable levels due to overexertion — this is called autistic burnout.
In 2020, a study supported by the National Institute for Mental Health and conducted by AASPIRE finally provided a formal definition:
Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.
While the more commonly used meaning of burnout refers to occupational burnout, work-sourced depletion resulting in less ability to do it; autistic burnout is specific to Autists and comes from life demanding more than we can deliver without support (and support can be very hard to come by, especially for autistic adults).
Worse, autistic burnout is highly associated with suicidal ideation and behavior.
From the same study, “[Autistic burnout] is an important issue for the autistic community because it is described as leading to distress; loss of work, school, health, and quality of life; and even suicidal behavior.”
The study also quotes an Autist:
[My situation] became way too much. After I [quit my job], I found it increasingly difficult to speak to people I didn’t know and became very depressed. I was told that this was considered autistic regression by a therapist. I was unable to work for several years after this experience and attempted suicide/spent time in the mental hospital before being able to get my life back in order.
Again from the study, “Informally, autistic adults describe how burnout has cost them jobs, friends, activities, independence, mental and physical health, and pushed them to suicidal behavior.”
I can personally attest to these quotes. It’s like losing the ability to be who you are, it can steal your whole life.
A study published in Sage Journals this year further elaborates:
“Autistic Burnout is a severely debilitating condition with onset preceded by fatigue from camouflaging or masking autistic traits, interpersonal interactions, an overload of cognitive input*, a sensory environment unaccommodating to autistic sensitivities and/or other additional stressors or changes. Onset and episodes of autistic burnout may interact with co-occurring physical and/or mental health conditions.
The following criteria must be met;
1. Significant mental and physical exhaustion
2. Interpersonal withdrawal.
With one or more of the following;
1. Significant reduction in social, occupational, educational, academic, behavioural, or other important areas of functioning.
2. Confusion, difficulties with executive function**, and/or dissociative states.
3. Increased intensity of autistic traits and/or reduced capacity to camouflage/mask e.g. increased sensory sensitivity, repetitive or stimming behaviour, difficulty engaging or communication with others.
The condition is not better explained by a psychiatric illness such as depression, psychosis, personality disorder, trauma- and stressor-related disorders. Extended or chronic episodes of autistic burnout may be preceded by brief or intermittent episodes.
*Cognitive input, refers to thinking and mental processing
**Please note, executive function refers to ‘the mental capacity to focus attention, to process information while completing other tasks, and to plan and remember instructions.’”
So, basically — autistic burnout has the ability to make an already-challenged life completely impossible.
What Can Be Done to Prevent it?
Preventing autistic burnout in oneself is all about naming your needs and knowing that they are valid.
Being autistic in NT society, we get primed to disregard needs that aren’t typical, but when we ignore them for extended periods, it adds up…and the price is extreme function loss and general hell that is autistic burnout.
For me, just figuring out what my needs are after masking them for so long has been a process; learning to be present with my body, checking in with my nervous system, and watching my mind are helping me to identify when I’m pushing myself too hard, thereby sending myself (further) into burnout.
Additionally, masking Autistic traits seems to be the most commonly cited reason to wind up in the seriously debilitated state that is autistic burnout, so it’s important that we aren’t masking too much.
From the first study, “By far the most prominent life stressor was masking, or the need to suppress autistic traits or disability, or pretend to be nonautistic.”
It also quotes a participant:
The metaphor I use is that long-term camouflaging and masking leaves behind a kind of psychic plaque in the mental and emotional arteries. Like the buildup of physical plaque over time can result in heart attack or stroke, the buildup of this psychic plaque over time can result in burnout.
We can’t just pretend to be neurotypical our whole lives, but via formal classes or persistent negative feedback from others, Autists (and neurodiverse people at large) get taught we ought to. Our internal wiring is different, so we’re different, and that needs to be more okay.
If you’ve got an Autist in your home or workplace, please listen to what their needs are, take them seriously, and know that the root of the problem is the most important thing.
Neurological overwhelm is usually the core problem, likely due to an environmental sensory issue; and in many cases, simple adjustments and/or accommodation tools will go a long way in helping the person to do their thing effectively without sending themselves into autistic burnout. Also, if we seem like we’re pushing ourselves too hard, just asking if we need a hand with something can go a long way.
The only way out of burnout is rest, rest, rest, and more REST, likely weeks, months, or even years — so taking breaks, making time to sort out accommodations, etc. is seriously worth it. And if you’re also in burnout, I hope you’re finding the rest you so desperately need; may we both be out of it soon.
31 Things Autistic Adults Wish NTs Knew
We don’t need anyone to speak for us, we need people to LISTEN.
There are many requests for allyship right now, and while it can be overwhelming to learn about disadvantaged communities while also navigating a global pandemic — it’s also crucial, and really quite exciting.
We’ve finally gathered the courage to share and listen to each other’s stories on a bigger level, expressing ourselves and working to understand what it’s like to live in circumstances unfamiliar to our own, and it truly does have the power to change everything.
This article comes from the Autistic community, of which I am a proud member.
It’s hard to be Autistic in a Neurotypical world, as things literally are made for a different neurotype, a different kind of brain. Additionally, instead of in the place of desperately needed information — like how to work with us, communicate more effectively, and why we do the things we do — we’ve got hoards of misinformation, stereotypes, and presumptions.
We’ve got a lot to contribute, and we deserve to be included, especially when it comes to being accepted into the workforce. But we’re not. And it’s not okay.
Though there’s a big organization claiming to speak for us, they mostly just tell the public not to bully Autistic children, which does nothing for the millions of Autistic adults trying to create a life against daunting odds. We need people to understand what it’s actually like to be of Autistic neurology, what it’s like to be in a body run via Autistic wiring.
In an effort to bridge the knowledge gap, I went to a trusted source for all things Autistic: the online Autistic community (specifically private support groups), and they/we had a whole lot to say.
This issue is, of course, triggering to many of us, so please try to understand that some of the answers will reflect that emotional upset.
Thank you for listening. 🙏
What We Need You to Know
- “Autistic people are the experts on autism. Stop speaking over us.”
- “I wish folx knew what an act of courage and vulnerability sharing one’s diagnosis can be, and that chuckling or otherwise invalidating their diagnosis is never ok. Normalize trusting that people know themselves better than anyone else could.”
- “We don’t grow out of it.”
- “That our way of being, interacting, communicating, experiencing the world isn’t less than.”
- “It isn’t just on us to adapt to the norm to be accepted, to be seen and heard. It is just plain ableist to expect that of us. It is as much on you, the neurotypicals, the society at large to make the effort to understand us, as much as you feel that it is on us to understand you.”
- “I hate when people say ‘oh everyone is a little autistic’ no not every one is a ‘little autistic’. You either are or you aren’t. You can have a trait that autistic people have but no, you aren’t a little autistic.” — Siera Komarek
- “That we aren’t broken and don’t want to be ‘cured’” — Nina Stepalovitch
- “They don’t call it a disability because I can function normally. There really are things I simply can’t do. Like any issue, it becomes a disorder when it becomes a problem that interferes with your daily life.” — Hayley Hackett
- “Believe us when we say something about our experience? So many times I’ve said something ranging from ‘that’s too loud’ to even ‘I have a hard time understanding TV shows cause I’m faceblind and lose track of the characters’ and it seems like anything I ever say that doesn’t line up with their NT experience gets questioned and invalidated. Just accept that not everyone perceives stuff the same way you do.”
- “I’m not a child. I don’t need to be treated like one.”
- “I don’t miss most of what you might be thinking or feeling, it’s just that any given person could react differently to the same situation on different days depending on so many things, that I don’t want to presume to be able to read your mind.” — Brooke Northrop
- “I wish parents of autistic kids would realise that the best way to address behaviour is to focus on the needs their kids are struggling to express. Many of the autistic ‘problem behaviours’ that parents get concerned about are actually just ways autistic people act when extremely upset. (Often it’s the way ALL PEOPLE act when they’re upset.)
We just get triggered by different things. so you’re sitting there trying to figure out what puzzle piece will make us whole or whatever — when actually we just need you to turn off the extraction fan.” — Leyla
- “YT autism is not the default. Non YT Autistics need MORE support not less because the medical and societal establishment thinks YT and male and cis is standard when it just isn’t.”
- “Diagnosis is only one way to discover that you’re autistic, you don’t become autistic the moment a doctor tells you you are, and people who have been autistic their whole lives know better about autism than the doctors ‘diagnosing’ it.” — Basil Pepperomia
- “If someone tells you ‘This is really hard for me to cope with’ just believe them. Try to imagine something that is really hard for you to cope with — not how easy YOU would find it. […] If you can’t understand someone’s sensory struggles, social struggles, or processing issues that’s okay, but you need to accept that you don’t understand instead of assuming it doesn’t make sense or doesn’t exist.”
- “Masking unwanted autistic traits is painful, draining, literally bad for our brains, and it’s scientifically associated with autistic burnout (extreme problematic traits) — which is associated with suicidal behavior. We can’t just ‘act normal’ for you all the time.”
- “ABA is abuse. We do not need therapy, we need a more hospitable environment. Our sensory needs and cognitive processes are completely different.”
- “Communicate directly. Stop using so much nuance and relying on others to understand something you’re not effectively communicating. Understand that our brains work differently, this is not something that can be treated or cured as it’s not an illness or injury.”
- “Hoping someone will ‘take the hint’ Is unclear and ineffective communication.” — Tabitha Anne Shaw
- “I’m so tired of people not doing communication.” — Siera Komare
- “Not everyone can communicate verbally all the time.”
- “Autistic brains are a natural, beautiful part of human diversity. It’s not some tragedy or disease. I’m not upset that I’m autistic. When I ‘come out’ to you you don’t have to make me feel better about it by saying how ‘actually it’s fine’ and Greta Thunberg is autistic too. Yeah I already know.” — Leyla
- “Stop using the fucking R word, ever, for any reason.”
- “A lot of cringe culture is just autistic traits. [In regard to NT acceptance] words never meet with actions.”
- “Sometimes the music/tv is painfully loud and sometimes I can’t hear it very well, even if it’s at the same setting as before.”
- “The main thing I wish people understood is that autistic adults with low-support needs like myself still occasionally need help, and that doesn’t make us less capable. Sometimes I need a little more patience than a neurotypical person, or my autism just needs to be taken into consideration a bit.
For example, not scheduling me as one of two servers on a holiday weekend with no other support staff. A neurotypical can compartmentalize that stress. I had a terrible meltdown and then shutdown. But I can handle any other very busy day just fine, just that specific scenario was one I shouldn’t have been in.” — McKala Hanes, 23, she/they
- “You might see us stim, but ‘looking Autistic’ or ‘seeming Autistic’ isn’t a thing.”
- “I want them to understand that we need different ways to work. Just because you can work 40 hours a week and do well doesn’t mean I can do the same. It’s really tiring and we need better accommodations to work so we can actually survive.” — Gabby she/her/hers
- “Unless it’s actually hurting someone or disrupting something, don’t immediately scold someone you’re conversing with for being ‘too loud’ volume-wise. And if it is necessary, try asking before shaming. I have so many issues now with talking because I know I don’t always have awareness of my volume when I go off about something I’m interested in and that could be made so much easier if people were just kind.” — Tabitha Anne Shaw
- “Some days are better days than others. Support needs vary depending on the day and circumstances. Just because I look put together and am fairly articulate, doesn’t mean I can feed myself or keep the house clean.”
- “Eye contact and honesty are not related. Eye contact and listening are not related. Eye contact and taking something seriously are not related.”
For more information, please check out #ActuallyAutistic, #AskAnAutistic, and/or absorb other kinds of content (essays, books, videos, films/shows) created by people who are actually Autistic.
Autism Allies — We Need You, Now
A movement called #StopTheShock is in crucial need of public support
Being of Autistic neurology in a society made for neurotypical brains is incredibly difficult.
What’s easy for most people is very often incredibly uncomfortable, or even painful for those of us who are Autistic. One personal example of this is getting cold, which physically hurts my body. I’ve always gotten some teasing for my reactions, but ultimately I’ve generally (gratefully) been allowed to do what I need to adjust.
Not all of us have it so lucky.
At the Judge Rotenberg Center in Massachusetts, USA, there are shock devices in use called that the United Nations (UN) Special Rapporteur on Torture called torture in 2013.
They’d been banned in the US, but last month the ban was overturned.
So, Autistic people, including children, are being literally tortured (again, defined by the UN) for offenses as small as refusing to take off a coat; or even for showing Autistic stims, like hand flapping.
In the United States.
A group widely trusted by the Autistic adult community, The Autistic Self Advocacy Network (ASAN), put together a petition to put a stop to this abuse—
From the petition (TW: physical abuse, ableism):
“Andre was a teenage resident of JRC. In 2002, he one day refused to take his coat off. The staff responded by placing Andre in restraints for 7 hours and shocking him 31 times. After this torture, Andre was in shock, comatose, and suffered burn wounds on his arms and legs.”
The petition has been up for weeks, but it still hasn’t reached a level where an influential amount of people actually know about it.
And perhaps more upsetting, when you look through #StopTheShock, it’s almost entirely us Autistic people doing the advocacy work.
The Autistic community is desperate for a paradigm shift in how we are viewed at large — as people in need of “fixing,” and/or made to be more “normal” — but surely everyone agrees that we shouldn’t be tortured for not being able to do the same things as neurotypicals, yes?
I don’t know what caregivers should do in regard to extremely problematic behaviors related to Autism, it’s horrible to hear the things that some families have gone through.
But I do know that my own problematic issues were/are rooted in being forced to do things that cause me intense discomfort or even physical pain, that these needs are almost never taken seriously, and that it has been truly dangerous for me in many cases. I also know that this sentiment is echoed throughout the Autistic community.
And I know this is something we need to figure out together, the world can’t go on just pretending like Autistic adults don’t exist.
Please hear us.
Like, really hear us: watch well-informed #StopTheShock videos made by people who are actually Autistic, watch the video testimonials of survivors, please listen to us *at least* in addition to the so-called experts who claim to speak for us whilst ignoring Autistic adults completely.
It’s scary that there’s been almost no neurotypical outcry over this.
This essay would include more helpful links (one more) but I had a mental breakdown that eventually involved seizures after I tried to really advocate for it last month, so I cannot focus on this issue for very long.
Many of us become incapacitated when emotionally triggered, as stressful emotions are largely processed via the nervous system and nervous system issues are a prime source of Autistic meltdowns.
We literally cannot change these things on our own.
We. Need. You.
Please sign, and please (please, please) share this petition.
7 Must-Know Autism Terms for Autists and Allies
A lil’ knowledge to help you be an effective self-advocate or ally
For people who are Autistic, knowledge about our neurotype — how our brains work — is incredibly empowering; and for those who care about us Autists, knowledge is empathy.
The present public perception of Autism is based mostly on neurotypical (NT) observations of our behavior. Focus is on the social implications, with people often referring to how we “seem,” but the internal Autistic experience is far more crucial for people to understand.
We need people to understand how it *physically* feels to be Autistic. It’s the only way our society will learn to stop unwittingly harming us, and better learn to include us.
Since we live in a society that was literally designed for a different neurotype, a different kind of brain, we are persistently expected to do things in a way that works well for most people’s brains — but that very often conflict with our own cognitive processes.
It causes very real problems, even for those who can mask their Autistic traits.
For me personally, it feels like pressure in my brain during tasks or environmental stressors (light, sound, conversation). I was able to pretend it wasn’t happening for years, but eventually, that masking took a toll on my brain, and I started having unexpected outbursts; which eventually turned (back) into full-blown meltdowns and body-wide physical pain.
In addition to the horror of the meltdown itself, which can last hours and involve self-harm, there are also other repercussions; the biggest being the loss of functionality and disabling neurological exhaustion, but there’s also potential consequences for actions during the meltdown, as well as shame.
And in addition to adapting to NT processes, we have to constantly observe and adjust our behavior to the NT norms. It’s just too much.
Additionally, since Autistic representation in the media is very narrow and often misleading; people at large have no idea what it feels like to be of Autistic wiring, making it even harder for us to explain, especially given that so many of us struggle with efficient verbal communication and executive functioning difficulties.
Too much of the onus is put on us, and far too little on those whose neurology isn’t struggling with the task at hand. We need to be met halfway. (Desperately.)
I hope defining these terms in language that aims to explain how these experiences physically feel will help both Autists in better articulating their own experiences—dealing with neurological malfunction is confusing, to say the least! — as well as helping NT allies better put themselves in our shoes.
Of course, I can only describe how my experiences feel, the adage of “if you’ve met one Autistic person, you’ve met ONE Autistic person” always applies.
Knowledge really is the beginning of all empathy, it can create a bridge between people who have a chasm of differing life experiences. One person speaking up in an otherwise indifferent room can make all the difference.
7 Must-Know Autism Terms for Autists and Allies
- Executive Malfunction: This term refers to our struggles with planning, remembering information, problem-solving, organization, and time management. This is one way to get that painful brain pressure I was talking about. For me, it generally happens whilst trying to use technology, verbalizing, remembering, filling out forms, doing finances, or when in Autistic burnout (see #5), freakin’ anythiiiiiiing. Ugh. It can be very problematic and can lead to expensive errors, dangerous meltdowns, and further loss of functionality — and yet, an executive malfunction does not indicate intelligence deficits, we’re just struggling to do things in a way that wasn’t designed for our different neurology.
- Meltdowns: I’ve gathered that to the observer, Autistic meltdowns look like a “tantrum” or “freak out’’; but what’s happening is actually neurological overwhelm, often due to sensory overload. Despite how it looks, it is a very physical issue, not just emotional. *And they. Are. Terrifying.* For me, at first, it feels like a huge overflow of anxiety in my body, as if on a malfunctioning rollercoaster and desperately want off, but I’m trapped…then I just kinda, for lack of a better term, go berserker. I want to stop, to behave rationally, but I can’t. It’s awful, almost like watching myself from the outside.
And in addition to the horror of the meltdown itself, which can last hours and involve self-harm/suicidal ideation, there are also other repercussions; the biggest being the loss of functionality and disabling neurological exhaustion, but there’s also the potential consequences for actions during the meltdown, and crushing shame, which can lead to worse. So, when an Autistic person says they’re fending off a meltdown, it’s crucial to take our needs seriously, because this issue is a very big deal and, at large, very misunderstood by the Allistic, or not-Autistic, community — especially regarding Autistic adults.
- Shutdown: These happen for the exact same reasons and need to be taken just as seriously as a meltdown, even though it may not seem as serious. An Autistic shutdown is the brain’s way of directing all that overwhelm inward instead of outwards, causing the person to become non-responsive. For me, these usually happen after a meltdown, like my brain is just…done. (I’ve heard them described as something experienced in place of meltdowns as well.)
- Going Nonverbal: When this trait is severe, this is completely literal; some Autistic people are nonverbal their whole lives. For me, this feels like my brain’s built a steep mountain around itself for protection, and eeeking any communication out (even typed) feels, and often is, simply insurmountable. It’s usually just when I’m dealing with burnout, but can also happen for brief periods when I’m overwhelmed.
For me, at the worst (*knocks on wood*) I can still mumble to myself, or my dog, but the words are likely to come out wrong and/or slurred and take immense effort to get out — which can lead others to very unfortunate conclusions, in addition to overexerting my already-taxed brain, which leads to further malfunction. So, via the hard way, I’ve learned to just not verbally communicate on those days!
- Autistic Burnout: This mofo deals us extremely intensified problematic traits, usually after a time of intensified stress or exertion. Here’s a technical definition: Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.
Everything from navigating the internet, to making calls, and driving can become a HUGE deal when you’re in burnout; it’s a very disabling condition made worse by blank stares and suspicion when we try to explain why we aren’t able to meet usual expectations. I’ve been fighting this mofo for over a year, but have experienced it for a duration as short as a few weeks, and have talked with other Auties who report it as short as a few days. Rest is the only way to get out of it, but think about resting your brain…it’s not exactly something our world is arranged for, is it? Ooofta.
- Special Interests (SpIns): Clinically, this is where they accuse us of having “rigid/restricted interests,” but more knowing researchers are pointing out they’re our best shot to career success. In fact, that’s precisely how I’m writing this article despite burnout! These obsessions (Neurodivergence and writing here) seem to nourish our brain, like they somehow fuel it. They can be lifelong, or change with time, and most of us have more than one.
- Stimming: Another community favorite! It’s described by clinicians as “repetitive motor movements,” and it looks like us moving our bodies differently than NTs, or otherwise doing things to engage sensory feedback — like playing with goo, staring at sparkly things, or touching velvet. These actions soothe the brain in a similar way to SpIns, and are often reactions to environmental, mental, or emotional stimuli.
It’s common to have different stims according to what happens, for example, I tend to handflap when I’m overwhelmed, I wiggle my fingers in front of my forehead when I’m thinking, and when in shutdown I love me some visual stimming. Some of us can mask the movements, but it’s bad for our brain function, so please exercise consideration and empathy before insisting we refrain. (See #1–5.)
With so much change needed it can be overwhelming, but it really does happen with one piece of knowledge at a time — individuals create change in this world. It’s the only way it can happen.
Help Autistic People by Tossing Out These 6 Toxic Norms
People don’t mean to push us down, but it happens every day.
In our society, with its multitude of toxic norms, people often hurt one another without even realizing it — an unfortunate fact that likely applies to everyone, and one that is a result of something called social conditioning.
Society trains us how to act, teaches us how to “fit in,” the things we need to do, and the ways we need to be to succeed.
Some of these things are helpful. Good manners are lovely: I like that it’s customary to say “please,” that we should apologize if we’ve hurt someone, I dig that it’s considered rude to invade personal space, etc.
Basically, I’m into all the ones that are about caring and safety.
But then there are the other ones…
The norms that wind up hurting people — perhaps especially autistic people — are often the ones that aren’t taught, or even really talked about; the norms that aren’t kind, but are also socially acceptable.
People don’t get called out for these behaviors. People certainly get hurt, but there are no repercussions for doing the hurting.
For example, gender norms are undergoing reconstruction, at last, due to high toxicity: women are, at large, no longer tolerating the unwanted sexual attention put upon us for centuries, men are increasingly less expected to just repress their emotions (thank goodness), and those who don’t identify with either category are finally starting to get their stories heard.
This evolution of our norms is a result of the original toxic expectations that were put upon us — and we’re nowhere near done, there’s still toxic norms all over the place.
The conditioning that creates these norms happens from the very beginning, with our parents teaching us the things they were taught; then it amps up when the socialization of school begins, and gets really serious once we’re learning not to “rock the boat” at work.
Serious harm is very often done in ways that are completely socially acceptable.
We Autistics don’t comprehend much of this conditioning, so we’re disadvantaged due to frequently misinterpreting these norms, thereby not knowing what’s expected of us; then further disadvantaged because adhering to these standards is extremely difficult due to having a different neurotype, so being quite different at large.
While I had a few plain ol’ bullies, most of my adverse social experiences happened casually and persistently, even with people who I know to be generally kind.
I’m not talking about our social evils here, but our social blindspots; “normal” modes of behavior people don’t seem to realize are harmful.
This kind of socially accepted behavior is usually othering, and/or discourages Autistic people from speaking up about our needs, teaching us instead to disregard them in order to blend in — which has consequences. Dire ones.
Fortunately, we each have the power to start changing the toxic norms we find ourselves surrounded by.
We just need to care enough to try and change.
I’m suggesting that the following changes apply to our social norms at large, not just to people who’ve disclosed that they are Autistic.
Of course, we need to address many harmful social norms in our society; but I’ve gathered a handful of tips relating to Autistic folks.
Before you dive in, it’s crucial to know that since there’s such stigma and misunderstanding around Autism, especially in adults, many of us aren’t open about it; working very hard to mask these differences (which, btw, creates other issues).
You cannot tell if someone’s Autistic or not by appearances, especially in adults.
So, while the explanations are going to be in relation to Autism, I’m suggesting that the following changes apply to everyone in our society — not just to people who’ve disclosed they’re Autistic.
Also, since it’s can be hard to articulate these things, and because internalized ableism is most definitely a thing, I recommend my fellow Autists also watch for these unconscious behaviors in ourselves.
Finally, I believe that everyone in society would benefit from these shifts in behavior, that they can help us all better support one another.
I hope you’ll consider them. (TW: #5 has a suicide statistic.)
Help Autistics by Tossing Out These 6 Toxic Norms
- Pointing out “weirdness.” Even when a comment about my weirdness (or its many synonyms) is potentially meant as a compliment, it’s usually triggering — like so many Auties, it’s just been used negatively and resulted in my being isolated far too many times. When admiring how someone’s doing something different, something like “I like your style,” or getting specific about why their different approach is notable is probably a safer bet.
- Telling people what they need instead of asking. When Autistic people draw boundaries to protect ourselves, or otherwise go about things differently; people very often push back, suggesting we do it their way instead. This pressure can lead to meltdowns, shutdowns, and Autistic burnout — all things known to completely disable us. Our needs need to be taken seriously, and since we are the ones that can feel our bodies…we are the ones who know what they are.
- Judging others based on how things “seem.” We all know that looks can be deceiving, that we shouldn’t judge books by covers, and that there’s more than meets the eye — and yet, people so often think they can quickly size someone up, judging their character and competence based on how things “seem.” Things will seem a jillion different ways based on our own experiences, personality, and…neurotype. At large, coming to a quick conclusion about people is not a wise way to facilitate an accurate understanding of other human beings.
But in the case of autistic people, this huge societal problem can become straight-up dangerous. Being misjudged can lead to our lack of employment, housing issues, and isolation, which are all stressors that make our brain functionality decrease. So, before you assume someone isn’t a great fit for a job/home/friend because they “seem slow,” or strike you as “goofy,” or look a bit disheveled, etc. — give them a chance. In our society, far too much importance is put on “seeming together,” and it’s not helping anyone.
- Writing someone off because you “just don’t understand them.” People are all different, and some people will take longer to understand — especially when they‘re of a different neurotype. It’s not fair to just disregard someone because you don’t intuitively get them; as a society, we write people off way too fast, and often for harmless things. This happens a lot to many Autistic people, leaving us with the feeling of, “What did I even do wrong??”
Sometimes a good conversation will clarify everything, but people usually don’t bother. When I was diagnosed, I asked the therapist if neurotypical people might have an easier time connecting with me now that I’m able to explain my differences. She responded by gently managing my expectations, saying, “Honestly, probably not. Most feel like it’s too much work.” But why are we expected to do all of the work?? (Questions asked with kindness are always the first step towards understanding.)
- Ignoring (or laughing at) someone’s struggle because it’s “too different.” This is heavy, but it needs to be known: isolation is a top reason the rate of suicidal ideation in Autistic people is a terrifying 72%. Serious emotional harm is often done in completely socially acceptable ways, like no longer communicating with someone who’s going through something very different, and/or difficult — and people in our society are big on that.
It can be hard to reach out when someone’s struggling, sometimes it brings up our own fears and issues; I’ve been there and done the wrong thing because I was scared. But it wasn’t okay. As a whole, we like “happy and normal,” and try to ignore the rest, or even mock it. Hard times are often faced alone in this society, regardless of neurotype. It‘s messed up and we can do better.
- Suggesting people are “just _____,” when they’re struggling. When someone’s having a hard time and it’s suggested that a condition may be the reason, people often say things like, “they’re not Autistic, they’re just crazy.” (This is something that applies to chronic illnesses as well, i.e. “they don’t have chronic fatigue, they’re just lazy.”) When someone in our life is having a struggle that we don’t understand, we need to ask *them* questions to better understand their experience; and to do so whilst giving the honest benefit of the doubt.
So, if we could start cutting out these behaviors in ourselves, and speaking up when they’re coming from others, it’d sure help!
I know a lot is going on right now, with many different communities asking for change; and even when the changes are wanted, warranted, and we’re on board — changes in what’s normal can still be hard.
But since the reward is a kinder society with improved mental health, making the effort is so f**king worth it.
Why Many Autistics are Offended by Elon Musk’s Use of “Aspergers”
The term is no longer in the US’s diagnostic manual for very good reasons…which include Nazis.
Last Saturday Elon Musk made a personal announcement while hosting the NYC-based show Saturday Night Live, one that’s upset many autistic people: “I’m the first person with Asperger’s to host SNL, or at least the first to admit it.”
It’s okay if you’re not seeing the harm in that.
US society (and global perception at large) is becoming more conscious and undergoing many simultaneous changes in perception, like a massive detox — people at large are still ill-informed of impactful issues concerning disadvantaged communities, and the autistic population is no exception.
All we can do is listen to a variety of people from the affected communities, and learn.
In this case, community objections include the smaller issues that Dan Aykroyd was actually the first autistic person to host (which was uncool to gloss over), and the word ‘admit’ could reflect internalized ableism — but the main issue is around the term ‘Aspergers,’ which has become controversial, especially here in the US.
It was removed from the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) in 2013, when Asperger’s Syndrome was absorbed by Autism Spectrum Disorder (many in the community prefer the more-descriptive Autism Spectrum Neurotype).
The associated functioning labels were also dropped due to harmful outcomes: those labeled “low-functioning” experienced opportunities being withheld despite ability and many in the “high-functioning” category were conversely presumed able to do things that they could not, therefore denied support and accommodations, leading to meltdowns and reduced functionality (and worse).
Basically, the functioning labels were a hot mess that left a lot of autistic people traumatized.
The new way has many flaws as well, mostly for also having a vague approach that leads to similar experiences of ableism — but at least it’s a little more specific and refers to support needs rather than pretty directly implying ability in the verbiage. Now, formally diagnosed autistics are assigned a Support Level at diagnosis. (Self-diagnosis is also widely accepted in the community due to excessive bias and barriers in the diagnosis process.)
I have a diagnosis of Level 2: Requiring substantial support. I was just diagnosed last year, but suspect I’d have been a Level 1 around 6–7+ years ago, as the problematic areas have greatly increased; something that’s common among autistics who mask their traits.
It’s presently a helpful distinction for me, as being without support has resulted in extended burnout and frequent meltdowns — however, it’s easy to see how it could backfire in very similar ways, especially as troubling traits fluctuate.
To provide an example of how problematic autistic traits can be fluid,
at this time I’m capable of doing things like writing essays about my current special interest (ta-da); but if I were to try to do this in an office, early morning hours, or even attempt to change topics, I’d very likely wind up having a meltdown, which would then take days (or more) to recover from.
I wasn’t always so sensitive in those respects and easily flew above the radar by subconsciously masking my traits (as happens, that backfired in a multitude of ways, including increased need for support).
Presently being a Level 2 doesn’t mean that I’m more intelligent than a Level 3, or less so than a Level 1.
These levels have absolutely nothing to do with intelligence, nor capabilities at large — instead describing our need for support/accommodations in order to function in our (neurotypically-biased) society.
The DSM describes differences in ‘social communication’ and ‘restricted interests & repetitive behaviors’ (the latter of which are affectionately known as special interests and stimming in the autistic community). This is a change from the old paradigm, in which those with Aspergers were widely viewed as being more intelligent due to superior intellectual development, a perception that has not died.
Public perception has very real effects.
When Elon Musk publicly disregarded the changes of DSM-5 in its home country, he portrayed himself as someone more intelligent than the autistic community at large; and the continued use of the term has negative ramifications on other autistics.
He could have used the updated terminology, helping to erase harmful stigma via a show that’s been a US culture staple for decades — but instead, he perpetuated it.
Sure, maybe he didn’t know, but given his fame and legendary genius status it’s safe to presume that someone gave him a head’s up, or he got there on his own; particularly since the change is nearly a decade old, and he’s been based here since 1995.
The term ‘Aspergers’ got its start in Germany, 1934, when Dr. Hans Asperger discovered Nazi psychiatry.
In a 2018 New York Times article, researcher Edith Sheffer described his work on autistic children: Some laud Asperger’s language about the “special abilities” of children on the “most favorable” end of his autistic “range,” speculating that he applied his diagnosis to protect them from Nazi eugenics — a kind of psychiatric Schindler’s list.
But this was in keeping with the selective benevolence of Nazi psychiatry; Asperger also warned that “less favorable cases” would “roam the streets” as adults, “grotesque and dilapidated.” Words such as these could be a death sentence in the Third Reich.
And in fact, dozens of children whom Asperger evaluated were killed.
Yes. You read that right.
The term Asperger’s is directly aligned with the murders of dozens of autistic children — all for the sake of Nazi eugenics, or wealthy white dudes deciding who’s “fit” to live life on Earth.
Another horrifying passage from the NY Times article: One of his patients, 5-year-old Elisabeth Schreiber, could speak only one word, “mama.” A nurse reported that she was “very affectionate” and, “if treated strictly, cries and hugs the nurse.” Elisabeth was killed, and her brain kept in a collection of over 400 children’s brains for research in Spiegelgrund’s cellar.
Sooooo, that’s where the term ‘Asperger’s’ comes from.
It’s Time to Do Better
While I understand that it’s hard for people to just have their diagnosis terminology switched on them, the changes in the DSM-5 were made for crucial reasons (more than discussed here) — and the update is having a really hard time gaining awareness.
This lack of societal knowledge means the continued perception that those with “Aspergers” are more intelligent/capable than those identified using the term “autistic.”
I want to emphasize that not all autistic people are aware of these US-based changes, and there are also situations where continued usage is logistically necessary. I don’t want to imply that individuals, autism organizations, and social media figures with the term in their branding are bad for not having changed.
We can only do what we can do. I get it.
But Elon Musk is not a likely-to-be-cash-poor non-profit or YouTuber, he is literally the richest person in the world and he’s also one of the most well-known.
He could have easily helped, but instead he did the opposite — and while that (alone) isn’t worth vilifying him for, the move shouldn’t just be overlooked.
It needs to be learned from.
Another quote from that NYT article brings this point home: Does the man behind the name matter? To medical ethics, it does. Naming a disorder after someone is meant to credit and commend, and Asperger merited neither. His definition of “autistic psychopaths” is antithetical to understandings of autism today, and he sent dozens of children to their deaths.
Other conditions named after Nazi-era doctors who were involved in programs of extermination (like Reiter syndrome) now go by alternative labels (reactive arthritis). And medicine, in general, is moving toward more descriptive labels. Besides, the American Psychiatric Association has ruled that Asperger isn’t even a useful descriptor.
She wraps up the essay with a request to the reader: We should stop saying ‘Asperger.’ It’s one way to honor the children killed in his name as well as those still labeled with it.
People act like psychology was built on the backs of giants, but it wasn’t.
Asperger may be the most offensive of offenders, but he’s far from the only toxic contributor.
It’s time to start looking at things from a more inclusive, efficacious, and empowering perspective.
We need to truly acknowledge that everyone’s worthy of life, even the (many) demographics that struggle to thrive in a society that was not built to include us — and moving away from this harmful term is one step towards those ends.
P.S. Nikola Tesla is rolling over in his freakin’ grave for being associated with such a perpetrator of societal ills. (You big Edison!)
My 9-Year Authenticity Mission Led to an Autism Diagnosis
Plus, tips for your own life-changing authenticity mission.
The journey to my summer of 2020 autism diagnosis — at 37 years old — was a lifelong one with a jillion ingredients, but my 9-year authenticity mission was certainly a crucial one.
It started one evening in early 2012, the night I realized I didn’t know who I was anymore.
I’d spent my twenties trying to find my people, my place in society — and after far too many job changes, ill-fated relationships, and moves, I’d come up short. I still had no idea where I fit, and worse, all that external striving had led to feeling like I didn’t even know who I was anymore.
I was 29-years-old; confused, broke, 40 pounds overweight, isolated, lonely, burnt out, and just completely lost.
I knew I had to find my way back to myself. But how?
Luckily, like many late-diagnosed autistic people, I’d spent the vast majority of my college credits trying to figure out the human condition, taking every sociology, psychology, and philosophy class that I could.
Brené Brown rocked my world with quotes like, “If you trade your authenticity for safety, you may experience the following: anxiety, depression, eating disorders, addiction, rage, blame, resentment, and inexplicable grief.”
In one called Eastern Philosophy, I was taught how to meditate, and why I ought to. I fell in love with it immediately but my practice was sporadic at best, as I was too focused on the external world to really focus on my inner one.
Additionally, my insides didn’t really match my outside, and this fraudulence was all I could think about when I tried to convince my mind to sit still in meditation. It was painful.
However, that class also introduced me to mindfulness, which can be done whilst also doing life-stuff, so I had a much easier time keeping it up.
That decade of consciously observing my headspace before realizing I was lost created at least a semi-awareness of my mind’s contents; so I knew that I spent most of my enjoyable thoughts contemplating the nature of reality, just philosophizing my lil’ brain and heart out.
It meant the world to me, but the few times I’d tried bringing these ideas up — ideas that examine our society, reflect on spirituality, and figure out how to live a soul-satisfying life — they usually resulted in a comment on my strangeness, a giggle, or a rolled eye.
And the rest of my thoughts, well, they were heavy on the grieving, pining, distressed, and self-effacing.
It wasn’t a great time to be me.
But, externally, I did my best to keep the “too weird” musings and endless sad thoughts to myself.
When I socialized, which was less and less by the year; I had a tendency to engage by asking questions and agreeing.
Talking about myself brought pressure because people very often reacted differently than expected, plus the sad stuff had a way of seeping out. Like many autistic people who mask their traits, I commonly felt like I didn’t have much to contribute, or that it wasn’t wanted.
Because I was using these social occasions, which were usually alcohol-centered, in such a deflective and people-pleasing manner — I usually felt like less after them.
Despite having genuinely laughed, enjoyed listening, even talked some story myself; I was usually left obsessing about what errant looks and comments had meant, wondering why I never felt seen, and if anyone else really did. (Do they?)
My Outer World Falls Away
So, after that 2011 revelation, having finally admitted to myself that I was lost, I sat down on my living room floor and meditated.
And, though my practice wasn’t daily, I kept meditating.
Additionally, I started changing the way I approached the internet, heading straight for personal development articles. That’s how I discovered authenticity maven, Brené Brown.
She rocked my world with quotes like, “If you trade your authenticity for safety, you may experience the following: anxiety, depression, eating disorders, addiction, rage, blame, resentment, and inexplicable grief.”
It was so spot-on, it felt like a personal attack.
After decades of wondering what my problem was, I had found my problem, at last — I wasn’t behaving authentically, and it was eating me alive.
My life and health got even more tumultuous after that, so the next decade or so would be a complete and total shitshow; but my authenticity mission co-occuring helped ensure that it was a highly centering one.
The primary cause of the shitshow, though there were many, was a congenital B12 deficiency that’d been prolonged by a homozygous MTHFR mutation; I’d nearly die from it in late 2015, with the doctor saying, “132 pg/mL is extremely low, you’d have been paralyzed in months and dead within a year.”
It’s been said that travel can help uncover who we really are by removing our own society’s influences; well, I didn’t go far, but my homeless experience did that for me.
The three years between starting my authenticity mission and getting that diagnosis were filled with ever-growing mysterious symptoms, moving too many times, and much professional chaos — however, this didn’t impede my authenticity mission, I kept right on at it.
The most important change I made was no longer having my “after-work beer(s),” something I’d presumed was normal from watching TV.
Instead of spending my nights zoned out, I started to tune in.
I used my time after work to start writing again, publishing personal essays on sites like MindBodyGreen, TinyBuddha, and Elephant Journal; as well as starting a blog largely about how to apply spirituality to messy ol’ life.
Additionally, I started a happy hour club for spiritual people; which brought much enlightening conversation, memories with many lovely people, and a great friend that I still have today.
All of these centering activities set me up to emotionally survive the experience I’d recently started on that diagnostic day: living a near-completely solitary life — just me, in my isolated apartment, alone with my mind. All. The. Time.
I’d leave weekly for a doctor/grocery trip, made possible by a Medicaid ride service; but other than that and maybe 10 precious visits spent with loved ones, I was all alone — for 22 months.
If I’d gone straight from that lost evening to such an isolated life, I wouldn’t have been able to survive the darkness that inhabited the ignored corners in the back of my mind. (Honestly, it nearly killed me anyway.)
But since I was a couple of years into working on being a more whole me, that unwanted isolation also presented a unique opportunity — I would truly see who I was without the ever-present influence of other people.
At first, I’ll admit that I just refixed my excessive other-orientedness to Facebook; a junkie looking for any kind of social fix, any shot at connection, at feeling understood.
But that’s not really what Facebook is for.
It became depressing, maybe it’d always been that way and I hadn’t noticed, but watching my world go on without me definitely wasn’t helping, so I stopped, and haven’t let myself idly scroll there for close to five years. While I know and care about those people, so miss knowing what’s going on with them; it’s really helped sort out my issues around insecurity, which are directly related to feeling like it’s safe to act authentically.
Of course, it was still a tremendously difficult time, and I had many personal relationship issues and related insecurities that whirled around in my head — but at least I wasn’t persistently feeding them new content.
And, eventually, I got to a place of feeling really, truly, centered.
I was insanely stressed trying to get marketing clients from my sickbed in order to pay bills, plus all the health chaos, so this experience was not at all expected.
This inner calm was actually so unfamiliar that it was a bit jarring.
I’d just gotten out of a long meditative bath, and laid down in a sun puddle — and quite suddenly realized I felt just thriving, it was like an energetic peace had been waiting under all my other-oriented mental bullshit and it’d suddenly filled my heart and spread to the rest of me; it was wildly inspiring, it felt like a peace that was ready to bust out bold works of creativity and authenticity.
And it did.
Getting to the Root of the Issue, at Last
That feeling, if only sporadic, helped me power through the rest of my time alone in that apartment — and then it helped me survive eviction, three months of being a guest whilst sick AF, and seven months of living in my barely-functional 1993 Camry.
If nearly two years alone is great for an authenticity mission, then losing the societal comfort you’ve always known and falling into abject homelessness is fan-f**king-tastic.
(Don’t get me wrong, I don’t at all recommend it, but it was wildly helpful, nonetheless.)
It’s been said that travel can help uncover who we really are by removing our own society’s influences; well, I didn’t go far, but my homeless experience did that for me.
My society may still have been everywhere I went, but I felt removed from it like I was no longer a member; that detachment hurt, but it also gave me perspective on what really matters to me and helped me release ideas for my life that no longer fit.
My diagnosis has also been a beacon of hope, and a lens for the world that finally makes sense, at last.
I eventually pulled myself out of homelessness (and into sensory-overwhelming roomate-ness), then finally won a disability payment for a couple of years of the (still-ongoing) health crisis, and that combined with paying writing gigs allowed me to get into my own place again, at last.
And it was here, in my lovely little space, that I realized my authenticity problems weren’t just about insecurities and fears, and my people problems weren’t just a result of my messy life — it was here that I’d finally learn I’m autistic.
When I moved in, I was feeling pretty darn good, lifewise. I finally had work I could do with health needs, it was fulfilling, I was finally making survivable money; and, after four loooong and lonely years, my health was manageable enough that I was out trying to make friends regularly, at last.
I was so excited to meet people in my new community as my wholly authentic self, and sans all the unappealing life-chaos…but it didn’t go as well as I’d hoped.
Even though I was looking for my people in places where I was likely to meet like-minds, and even though I was talking about the common interest at hand, not life-drama — they still looked at me funny after I spoke, like I wasn’t doing it quite right.
They still thought I was hitting on them, or otherwise misread my motivations. They still totally misunderstood the things I said. They still made inaccurate assumptions. And they usually stopped returning my texts after knowing me long enough.
I didn’t know it yet, but my authenticity mission had largely unmasked my autism, so people were reacting to that differentness; plus, now-ineffective-yet-ingrained masking behaviors just confused matters further (still do).
By the time the pandemic started, I was relieved to no longer engage in the heart-wrenching activity of trying to meet people who truly get me.
However, the continued shocks of 2020 quickly overtook that relief, and the meltdowns that I’d been attributing to physical pain from health issues, went from monthly-ish, to several times a month, even though much of that body-wide pain had dissipated.
The meltdowns continued to increase and by the end of June, they’d taken over my life and neurological health — each one causing hours of being unable to do anything but cry, scream, zone out, pace, or, honestly, self-harm (autistic meltdown norms), and days of intensified symptoms afterward—they are truly terrifying experiences.
Additionally, working on becoming a more whole version of yourself won’t just help boost your joie de vivre, it can lead to you having a better impact on the world, yours, and ours.
I sought answers by looking into the neurology of Highly Sensitive People, something I’d been thinking of as “muggle empath,” and kinda wrote off due to already doing all kinds of spiritual work on owning this sensitivity. But I quickly discovered that there are actually neurological differences, so kept digging and found an article asking if HSP’s were actually representative of the female autism phenotype.
My life flashed before my eyes as I read the article, and it kept on doing so when I moved on more information, my brain suddenly doing its hyper-focus thing — an occasional autistic perk that allows me to work on chosen topics with great speed, for many hours.
And, via the grace of telemedicine and a serendipitous therapist recommendation, I was diagnosed with Level Two autism just a few weeks later.
(My diagnosis experience is not at all typical, I got lucky — as a result of this systemic hurdle, self-diagnosis is widely accepted within the autistic community.)
While it’s been extremely overwhelming (to put it mildly) to learn that I’m actually autistic after nearly four decades of thinking I just sucked at being normal; my diagnosis has also been a beacon of hope, and a lens for the world that finally makes sense, at last.
Additionally, I’ve also been able to join online support groups for autism (and late-diagnosis autism specifically), which has felt miraculous. I log onto those groups and get to read posts that I could have written — it’s uncanny and wonderful.
I’m not a freak. I’m just autistic.
And now I know there are all kinds of (literally) like-minded people out there; I have a word to describe people who think like me, a word that can help me find more of them, and a word that’s helping me get tools so I may get better and actually go meet them.
Without my autism-unmasking authenticity mission, I may have just been a failed neurotypical forever; doomed to have therapists always looking at me quizzically, never providing the answers I so desperately needed.
Regardless of your neurotype, getting real can help you get your answers.
Authenticity can teach you how to can best live by introducing you to yourself, your whole self—and anything else is one shaky foundation to build your life on (trust me).
Bring More Authenticity into Your World
Your authenticity mission isn’t likely to result in an autism diagnosis, but it can still help shift your life into one that truly suits you — and you don’t need to almost die, endure years of isolation, nor become homeless to do it.
Additionally, working on becoming a more whole version of yourself won’t just help boost your joie de vivre, it can lead to you having a better impact on the world, yours, and ours.
When we become more aligned with who we really are, we become more present, more willing to engage, and better able to express ourselves in ways that are helpful — as well as more interested in doing so.
Things might shift a bit, but when they settle, it’ll be somewhere we can better grow.
- Plan alone time. Years in isolation aren’t necessary for everyone — thank goodness! — but quality solitude is a mandatory step in becoming more authentic.
- Pick up a childhood hobby. For me it was writing, maybe for you, it’s horses. Whatever it is, pick it back up and remember what made you love it, even if it doesn’t recatch your fancy it’s likely to inspire something that will.
- Stop gossiping. Help rein in the urge to compare by curbing the urge to know and spread others’ business, as well as reconsidering how you experience social media behavior — is it focused on comparison and/or judgment, or is it focused on what you’d like to bring into your life?
- Acquaint yourself with norms in other circles. While it can feel like our personal world is the entire world, “normal” isn’t a freakin’ thing, and reminding ourselves of that helps relieve the pressure to live up to others’ expectations.
- Meditative time. Maybe it’s full-on meditation, or maybe it’s a walk in the woods, but get quiet and see what’s really on your mind to connect with your whole you.
- Keep reading about it. There’s no need to reinvent the wheel here, and learning from other people’s mistakes, detours, and mishaps is a highly efficient way to approach any task — so devour any authenticity and personal development materials that catch your eye.
Best wishes on your journey! There will probably be growing pains and some awkward feelings, but certainly no more awkward than pretending to be less of yourself.
Remember, you need your whole you to thrive — this journey is worth it.
Autism Acceptance > Autism “Awareness”
Awareness efforts very often do more harm than good to the autistic community. Listen to us, not people talking *about* us.
Everyone knows autism is a thing now. It’s been aware’d.
The problem is groups like Autism Speaks haven’t made people aware of what autism *actually* is, instead having the effect of “BEWARE of autism” — that organization even put out a commercial about how autistic children destroy their parents’ lives.
We don’t need a warning. We are not threats.
We are human fucking beings.
We need people to know we have different needs and when people push them it can have dire neurological consequences.
We need people to know that problems with executive functioning don’t mean that we’re stupid, it just means you need to give us a second.
We need people to know that if they’ve met one autistic person, they’ve met ONE autistic person. (The spectrum is already colorful, #colorthespectrum peeps, the problem is that no one is interested in all of the different hues!!)
We need people to know that “curing” us would mean that we’re no longer born.
Autism is a neurotype. A type of brain.
The only thing that could “cure” it would be on the lines of eugenics or genocide.
I’d love for there to be more research done on ways to prevent meltdowns, tamper sensory issues, and other tricky aspects of the neurotype — but sorting all that out would not “cure” us.
We’ll always be different.
We’d still approach things differently, also referred to as “thinking outside the box.” We’d still speak directly, which can be very useful in a society where facts have become debatable! We’d still miss things that seem obvious to NTs, and still notice things that they/you do not.
Diversity is an evolutionary strength in nature, and human beings are no exception to this rule.
Please help us rock our differentness, please help us to thrive so that we may better contribute to society.
Read the stuff we write, watch the videos we make, and otherwise engage with the #actuallyautistic population.
(We’re here! We’re chatting away, even if it takes a keyboard!)
It is not okay to listen to people claiming to speak for us. It is dangerous.
We have truly terrifying mental health stats.
This. Is. Important.
To those promoting harmful NT ideas of “awareness,” please, please for the love of freakin’ god, use your voices and platforms to shed light our community itself, people who are #actuallyautistic.
Please stop hurting us with this puzzle piece bullshit.
It’s already hard enough.
This World Autism Awareness Day, Give Us Acceptance Instead
Autism is a disability, and that’s okay — we need your acceptance of authentic autism, not denial and euphemisms.
We need to talk about this image, because — sans red edits — this attitude is wildly popular, and wildly harmful. (I do realize the creator likely had kind intentions, but how things actually affect vulnerable folks is far more relevant, yes?)
Like other marginalized communities, our society’s idea of how to help us is very often actually harmful.
Autism is indeed a disability.
And that’s okay — ‘disability’ really isn’t a dirty word.
Disability is a word that describes the state of not being able to do the same things as most people; and, more importantly, it’s a word that succinctly provides a reason for needing some help to achieve something, a word that can provide access to desperately needed support.
Secondly, when people take this kind of attitude, it’s infantilizing.
Autistic adults may not be as cute as autistic kiddos, and we may not have such an affect on neurotypical people (those with “normal” brains); but adulthood is significantly longer than childhood, so there are a lot more autistic adults than there are kids — yet society (therefore many support services) act like we don’t exist.
And, perhaps more importantly, these euphemisms for ‘disabled’ result in a lack of support due to creating a perceived lack of struggle.
Many autistic adults do not “seem autistic,” as we’ve had to severely edit our autistic expressions in order to function in a society that doesn’t want to accept our differences, that gives children therapy on how to be “normal” instead of teaching how to assess and maximize strengths — which is likely to involve “acting autistic,” or being authentic. (Pretending to be normal, called masking, takes a shit-ton of energy, and often results in negative coping behaviors as well as autistic burnout, which is associated with suicide.)
You can be disabled, and be a freakin’ rockstar. Both things can be true. (Look at Lady Gaga.)
Since we make society uncomfortable when we “seem autistic,” it usually shames the autistic out of our seeming-sphere — but figuring out how to seem more normal doesn’t mean that the struggle isn’t there, it merely means that society has made us hide it, which, again, has very serious consequences on our neurological and mental health.
Ignoring the challenges of autism, and disability at large, don’t make the struggle easier.
It makes it harder.
Disabled lives aren’t improved when we’re shamed into no longer talking about our difficulties — that merely serves to make it easier on the abled, while causing us to have to deal with it alone.
And not being able to do the things that normal adults are expected to do is immensely difficult.
It’s hard to have to rest for a day after going to the grocery store, if I’m able to handle it at all. It’s hard to have people constantly not understand what I’m trying to say, even though I feel I’m being perfectly clear. It’s hard to have people persistently misread my intentions and motivations. It’s hard to have no idea how others might react to what I need to say. It’s hard to often feel clueless as to what expectations for behavior are. It’s hard that I can be sent into a meltdown simply because something’s too loud. It’s hard that people don’t take my needs seriously, just because they’re different. It’s hard that just leaving the house, or trying to talk to other humans, can result in winding up in the life-stealing state of autistic burnout.
It’s. Fucking. Hard.
When someone wants to insist that I am not disabled out of “positivity,” they are denying that my challenges exist. They are saying these struggles are not part of my life, and that they expect me to behave as such.
So, we can’t talk about disabled struggles, and we’re also expected to be positive despite them.
And this is supposed to help us?
Being disabled doesn’t mean that we’re worthless, which seems to be the intended point of the original meme.
However, we know that already, for one — it’s generally the typically-abled who assert that premise — plus, despite the struggle and support-denying societal attitudes in our way, there’s disabled brilliance at the top of most fields. (There’s also autistic-specific brilliance at the top of most fields, get it, get it my fellow auties.)
You can be disabled, and be a freakin’ rockstar. Both things can be true. (Look at Lady Gaga.)
In the complicated and confusing world we live in, things need to be called what they are — and autism is a disability, especially in a society that demands that we conform to often-harmful NT expectations.
Please, just call it what it is, whilst knowing it’s never a reason to write someone off.
Work with us. Please.
Here are a few suggestions to help be an ally for autism acceptance:
- Embrace the social model of disability, which says disabled people aren’t broken and in need of fixing, that the more effective approach is for society to accept and work with our differences.
- Don’t assume that someone is unable to perform a task because they behave in a way that is obviously autistic, like moving their body in a way that is non-normative, or taking a bit longer to respond.
- While everyone appreciates kindness, NT perceptions of politeness often result in miscommunication. Please speak to us directly, as we’re not known for picking up on hints.
- Offer the benefit of the doubt if you’re offended by our directness, which often comes off as condescending to NT’s (who very often seem condescending to us as well).
- Don’t believe stereotypes. For example, it’s commonly said that autistic people aren’t empathetic, but that’s not true. This perception happens because we can only offer an autistic perspective, and we think differently; so when we’re trying to imagine things from an NT’s perspective, we’ll often assume a totally different reaction or view. (NT’s very often seem to lack empathy to us as well.)
- Consume the work of actually autistic advocates, read our essays, watch our videos, and share the work that helps you reach understanding.
- Don’t support Autism Speaks and other groups that advocate doing things like “curing” autism, which isn’t a thing, and doesn’t need to be a thing.
- Just ask us, individually, as we come into your world — we’ll also be doing our best to adapt to you.
Thank you, and happy autism acceptance month! ♾
The Autistic Representation Problem
Authentic representation is crucial, especially when the demographic is so vulnerable.
Like Sir Anthony Hopkins, I am a late-diagnosed autistic person.
And when I tell people that I was diagnosed with autism at 37 years old, they very often don’t know what to make of that fact — some even hinting that since I don’t “seem autistic,” that I might be misdiagnosed, that the highly-experienced mental health professional who spent hours diagnosing me was incorrect.
This experience is rather typical for late-diagnosed adults.
The reasons for this are multitudinous, but can largely be filed under “autism updates in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition” and “stigma and misrepresentation,’ which is where Sia’s movie Music comes into play — as the film is highly problematic in that regard.
As we say in the neurodiversity community, “If you’ve met one autistic person, you’ve met one autistic person.”
In 2013, the DSM-5 redefined autism when it combined five developmental disorders (including Asperger’s) under Autism Spectrum Disorder, a term contested in the autism community, with many favoring the less problematic, and more descriptive, Autism Spectrum Neurotype; but a change that’s generally been supported in both the scientific and autistic communities, though some do call for more revisions to help autistics find diagnosis (and its tools) before traits become more problematic.
The changes were completed nearly a decade ago, but are still being integrated into the often-archaic mental health system, and autistic females are still thought to be extremely underdiagnosed.
One of the reasons for this underdiagnosis is that females are often adept at a coping method called masking, which involves suppressing natural reactions in an often-unconscious attempt to “seem normal.” (It should be noted that this presentation, called the ‘female phenotype’ is another debated term as there’s great evidence that any gender is capable of this — Sir Hopkins, an accomplished actor, is a very likely example of a male who could likely sort out “acting normal” via observation and imitation.)
Though masking can be very effective, this coping method often becomes problematic for the autist’s mental and neurological health.
Masking is highly associated with autistic burnout; a condition which very often results in a severe physical and neurological incapacitation (including going nonverbal) that can last for months, or even longer, and is (unsurprisingly) associated with suicidal behavior.
So, while one might think that if autistic traits don’t persistently disable, they shouldn’t warrant a diagnosis — it isn’t that simple.
Hiding the way one’s brain functions requires an immense amount of neurological effort, and, sooner or later, it comes at a cost; and if society keeps getting the same stereotyped representation, autistic people will continue to be underdiagnosed due to them, and their therapists, not seeing autism as a potential diagnosis.
We shouldn’t live in a society where medical professionals often follow media and societal expectations over science, but we do, so we need the media to take portrayals very seriously.
The Representation Issue
To explore the second matter, “stigma and misrepresentation,” we’ll first turn to the #ActuallyAutistic movement.
Actually Autistic is a movement that was started by the autism community on Tumblr in 2011 and has since been spread to other social media platforms, which now has millions of posts across TikTok, Instagram, Twitter, Facebook, and other social media platforms.
The movement was started because people in our society, at large, have a very narrow idea of what autism looks like, and it causes a lot of really harmful issues for autistic people.
The thing is, autism does not look or “seem like” anything — and the media is telling people it does.
We’re individuals with unique experiences, each affected by different areas of the spectrum; plus, many of us are masking our traits in order to survive in a society that seems determined not to take us seriously.
As we say in the neurodiversity community, “If you’ve met one autistic person, you’ve met one autistic person.”
To further explain, autism also can also manifest in all kinds of ways because the autistic neurotype affects many aspects of neurological function.
Unfortunately, ‘Music’ has not only had oodles of ableism issues, but Sia herself taunted the autistic community when the abundant representation issues were brought up on Twitter.
Most think of the spectrum as a linear construct that goes from ‘mildly autistic’ to ‘very autistic,’ but the autistic experience is actually more akin to a color wheel representing many different traits and behaviors within the areas of executive functioning, perception, social abnormalities, movement, language, monotropic mindset (focus on special interests), sensory processing, and more.
So, Rain Man might have been highly affected in the areas of language, monotropic mindset (counting), and social abnormalities.
Sam on Atypical might have a very similar profile, and, more importantly, expressed in a very similar way.
The same goes for Sean Murphy on The Good Doctor; as well as Abed in Community and Sheldon Cooper on The Big Bang Theory, who are widely perceived as being autistic.
Therein lies the problem.
When physiological conditions are repeatedly portrayed in the media in a similar fashion, it creates a broad misunderstanding and stereotyping in regard to what conditions actually look like, and, crucially, what responses are actually helpful, and which can (often unintentionally) harm.
This gap in public perception and awareness leads to a lack of emotional support, denial of crucial services, and even misdiagnoses — which is a huge deal as 72% of autistic people are considered high-risk for suicide.
How autistic people are represented matters.
It needs to be accurate, and it needs to involve us.
The Trouble with ‘Music’
So, you might be saying, “What about Sia’s movie? That’s different, it’s about a female.”
Unfortunately, ‘Music’ has not only had oodles of ableism issues, but Sia herself taunted the autistic community when the abundant representation issues were brought up on Twitter. (This controversy resulted in the filmmaker deleting her account after publicly apologizing.)
Makers of streaming art — please let this Sia moment be the last stereotyped representation of an autistic person.
Additionally, Music appears to be a female version of a similar profile: speech problems, monotropic mindset (music), and problems with social awareness — with a large helping of differences in movement, resulting in highly-problematic stimming imitations performed by a neurotypical actress.
And, again, it’s expressed in a very similar way, Music is a lot like Rainman…but with more pizazz.
There needs to be a wider representation of the autism spectrum, so that people may gain a better idea of all the different ways we can appear in life, and stop unwittingly harming us.
To give an example of a potential presentation that defies stereotypes, I’ll cite another fictional character dubbed likely autistic by many autie fans: the wonderful Leslie Knope, of Parks and Recreation.
Knope is a passionate and hilarious woman who only wants to talk about her special interests (politics, her friends, waffles, and Friday Night Lights), can behave aggressively (often inadvertently), has great difficulty understanding boundaries, and though she’s extremely compassionate and caring, the emotional reactions of others often surprise and confuse her, which continuously causes issues. (She’d have a really challenging time in the “real world,” I guaran-fucking-tee it.)
Or, better yet: the similarly dynamic, complex, and utterly delightful Matilda on Everything’s Gonna Be Okay, played by Kayla Cromer — who is actually autistic!
As Matilda’s a recent grad, maybe in future seasons we’ll see her dealing with day-to-day adult autism issues; trying to make it in an office without masking herself into burnout, dealing with sensory issues whilst need to “be professional,” managing grocery shopping with executive functioning issues, and the challenges of stunted success due to simply not “seeming normal.”
And while I could do with less self-deprecating humor from Matilda in regard to autistic traits, I love knowing that the performance is at least coming through an actress who knows what it feels like to behave in ways that are often misunderstood; and it’s also just so healing and inspiring to see an actually autistic person rocking their chosen field.
Though I like the aforementioned characters (especially Abed!) and still watch The Good Doctor; now it has been done — Cromer, and Everything’s Gonna Be Okay, have proved that an autistic person can lead a television series.
As a result, if a new show or film comes out without true autistic representation, it will almost definitely get shit from the #ActuallyAutistic community.
Which brings us back to Music.
Personally, I’m not black-and-white on if only autistic actors should play autie characters; but they absolutely have to be extremely knowledgeable about why we do the things we do, they should understand how it feels, physiologically — and no one knows that better than someone who is actually autistic.
This is especially relevant for a character like Music, who is completely nonverbal (which doesn’t mean vacant, as many presume) and has very visible stimming traits.
We Have So Much to Offer, Please Help Enable us to Do So
I truly cannot overstate the importance of our society becoming more aware of the fact that autism can appear in a myriad of ways, especially in adults.
It’s extremely difficult to live in a society that was literally built for a different kind of brain, that persistently overwhelms our neurology; a society that disables and disregards us, and very often when there’s a simple way to just work with us, if only people would choose to try instead of dismiss.
And I believe, I hope, that they would choose to work with us if they just knew how; and if they just had any idea of what we’re actually up against.
The autistic community hasn’t been able to get people to understand on our own; unsurprising as there’s a lot working against us, and the vast majority of us are exhausted and platform-less.
We need the media’s help with this. We need you to start telling our stories.
Our actual stories, in all their complexity and variety.
They need to be heard so people will start taking us seriously, so we can get the support we desperately need. When you start listening to autistic adults, hearing our harrowing tales of trying to survive in this incompatible world — that horrifying statistic about 72% of us being high-risk for suicide starts to make a lot of sense.
We are truly up against so much, even if we don’t “seem autistic” in the moments that you’ve witnessed.
But our struggles don’t mean we have nothing to offer the world; as wonderfully demonstrated by Sir Hopkins, Miss Cromer, and so many others, we have much to contribute.
We just need people to start asking and learning how to work with us, rather than (often unwittingly) working against us, so that we may live up to our true potential; and while readers are encouraged to peruse the internet of #actuallyautistic, we desperately need the media to take the lead in ensuring accurate and authentic representation of the vast autism spectrum.
So, makers of streaming art — please let this Sia moment be the last stereotyped representation of an autistic person. Fund actually autistic projects, hire actually autistic creatives, and seek actually autistic consultants.
Nothing about us, without us.
Thanks for reading! Writers are paid via claps on Medium (you can do up to 50/article), so if you appreciated the article I’d appreciate some “applause.” ❤
Autism can only become a superpower if it’s empowered.
But how tf do we do that? Here’s some ideas, from one trying autist.
It can be really overwhelming to be autistic in a neurotypical society.
Things quite literally weren’t designed for our often extremely sensitive nervous systems, causing all kinds of potentially-serious issues; and people very often misunderstand us, making NT assumptions about our behavior. (Like, how hard is just asking a direct question? 😅)
Of course, there’s a bunch of other bummers, but that’s not what this here article is going to be about.
There are also many cool things about being of the autistic neurology, unique ways of being that help add color, innovation, and life into the world. We are also more powerful than most folks recognize, especially when we’re in an environment that is conducive to our different sensory needs.
I believe that we can thrive, that we can find a way to work with (and influence) society, and that we can be our whole, best, selves.
I’m not yet a master on how to thrive autie style, as I was actually just diagnosed seven months ago and have been in-and-out of autistic burnout for months — but I’ve been obsessed with figuring out how to thrive as my authentic self for nearly a decade, after far too much living as a half-me, striving to “just be normal.”
Fuuuuck it. Normal means neurotypical, and we’re just not. In order to thrive, we need to sort out a few things; and we need to do them on our own terms, whenever possible.
Here’s what I got, so far:
- Own our needs. Different needs are often disrespected by others, so it’s crucial to analyze what our biggest triggers/drains are and know we have a right to live a life that accommodates them. If you don’t already know the #spoontheory — learn it, know it, live it.
- But don’t forget to own our shit. If we use autism as an unnecessary excuse, acceptance will never happen. While letting other people push us is a great way to get ourselves into #autisticburnout, we must know when to push ourselves.
- No people-pleasing. When peopling can be so persistently hurtful and confusing, it’s tempting to try to be whatever others seem to want us to be — but we’re often not great a figuring out wtf that is, for one, and two it just leads to complications and being seen as less. Fuuuuck it.
- ID strengths and weaknesses. Autism generally has perks as well as weaknesses, like hyperfocus on special interests and an ability to understand the nuances of topics. Finding means and tools to amplify/better utilize the former and better manage the latter is wildly empowering.
- Calm down list. It’s not fun for anyone to be overwhelmed, but with us it can lead to meltdowns and neurological upset, so it’s important to know how, precisely, to mellow. Making a calm down list with things like favorite stims, special interest activities, and comforting rewatch shows, is a great way to regain control.
- Get organized. If you don’t already have a method that works for you (or several), find a way to manage your life that truly works for you. Personally, I use a desk calendar, Cardsmith on my computer, and the Strides app. I found it overwhelming, but lots of auties love the Tiimo app too!
- Be healthwise. It’s not uncommon for auties to also deal with comorbid illnesses, and we’re also more likely to have gene mutations like MTHFR, which can cause complications; so it’s wise to read up about how we can better manage our bods.
- Empower ourselves with knowledge. Learning about how the autistic brain works enables us to identify triggers; for ex., before knowing I was autistic I was extremely sensitive about my executive functioning difficulties, resulting in feeling bad about myself really often — but now when they happen I know my brain’s just tired, and I best be mindful with my energy.
- Connect with other auties. While it’s thrilling to gain understanding and control of our minds through methods like books, articles, videos, and scientific research; connecting with other auties about how to live better brings answers, connection, and community that only two-way communication can provide. Online platforms, like Facebook, and hashtags like #actuallyautistic or #neurodiversity are great resources.
- Get into self-improvement, especially around self-acceptance. Yes, you might roll your eyes, and you might cry — but there’s no way to learn to fill our own cups if we don’t believe we have anything good to put in ‘em. And. We. DO.
I’ll be posting more content like this on my new Instagram page, Thriving Autist!
I Am More Than My Malfunctioning Brain And Body
Ableism doesn’t usually come in the form of teasing, it comes in the form of being written off.
I recently met someone for the first time during an autistic burnout, which is when our brains are at their very least functional — making just about everything an immense, and often undoable, task.
But I’d been improving and was feeling confident I’d be able to have at least a short conversation without much trouble; plus, we’d Zoomed, he knew all about my autism diagnosis, and he seemed very compassionate so I figured he wouldn’t write me off if something did happen.
Unfortunately, the very beginning of the conversation should have been a warning that perhaps I’d been a bit naive in my assessment. He entered my patio and asked about the sign on my door, which asks people not to disturb me. (A very necessary effort to help lower autistic meltdowns, as people had been essentially walking right into my apartment and surprising the fuck out of my very-sensitive nervous system.)
He made a vaguely disapproving face and asked, “What’s that sign about? You seem so kind…”
I had a hard time explaining the sign, taking several minutes to explain something that a happier brain just allowed me to write in one sentence. He didn’t seem to understand, and instinctively I reacted by engaging in a masking technique — changing the topic instead of making sure he understood.
Attempting to ensure people understand what I’ve verbally communicated often winds up in both a lack of improved comprehension + some triggering comment like, “Yeah, I already got it…,” all annoyed-like, even though they’ve clearly demonstrated that they do not. It’s simply maddening, like I don’t quite speak my native language.
But talking about common interests was going great, anyway, so I was sure I’d at least made a friend; then a neighbor glared at me and slammed her patio door shut (I struggle with verbal volume control), and I immediately burst into tears.
My body twitched and I knew my hands wanted to shake about, stimming the tension out of me; but I suppressed it, laughing at myself instead, which sent all that energetic overwhelm inside me. It was just a minute or two before his words started to become incomprehensible to my ears, and that scary white light in my brain started flashing. I had to ask him to leave, with great kindness — but also in a hurry, knowing a meltdown (or worse) could come if not.
I thought it was all good as he left with kind well-wishes in parting, but a few days later it became clear that I did not make a friend. I’d been written off, yet again. And for a 20-minute conversation, when we’d been chatting for weeks.
It’s very frustrating to be judged for the things your malfunctioning brain and/or body are responsible for, especially when you’re striving to do the absolute best you can.
Not being able to welcome strangers into my space without notice doesn’t make me unkind, and having trouble verbalizing doesn’t mean I lack valuable perspectives.
And while I’m at it — not being able to hike doesn’t mean that I don’t appreciate nature, and it also doesn’t mean that I’m lazy. Not being able to work normally doesn’t mean that I don’t miss it, that I don’t crave the nourishment of being able to connect with others and contribute to a community.
Having pain that you cannot see doesn’t mean that I’m crazy, or a liar. Being prone to depression doesn’t mean that I don’t value and honor life with my whole soul. And needing medical cannabis doesn’t make me “just a stoner.”
People write off the disabled, and it’s not like how we see on TV; they’re not calling us names and pushing us down, it’s far more subtle and incidieous. (And much of the time we don’t even look disabled!)
The cruelty in our society doesn’t only come from the things overtly said and done.
Far more frequently, it lies in the things left unsaid.
Messages communicated with a mere disapproving glance or rolled eye, a change in the vibe of the relationship, messages left unresponded, insults accompanied by far-fetched claims at “just teasing,” exchanged glances that demonstrate you’ve been disparaged behind your back, and things said making their way back to their target.
It’s cruel anytime, but when it’s done in response to things totally out of someone’s control, problems that already weigh them down and make life seem impossible — it’s fucking reckless.
So, if you know someone struggling due to a misbehaving brain and/or body; please, for the love of all that is holy, just give them a chance to be the best person they can be while dealing with their difficult situation.
Ask more questions. Truly listen to the answers. Try to find more essays like this, advocacy essays written by people who’re actually battling the same health issues.
Disabled people very often have to do and/or sacrifice a lot in order to socialize (so much more than abled folks understand), and that’s in addition to what we go through afterward, to recover.
Can’t you just take a little time to give us benefit of the doubt?
Autistic Burnout from the Inside
It’s more than just “burnout,” it’s neurological incapacitation.
Imagine that trying to enjoy the world outside of your tiny studio apartment (even your precious patio) involved a very high chance of your brain becoming overwhelmed to the point of malfunction; the sounds, brightness, unpredictability — all threats that could potentially result in meltdowns and a repeat of seizures, which you find terrifying.
Every time you verbally communicate there’s a ~50% percent chance of the words coming out wrong, and/or with tears. Even text-communication is often overwhelming. Basic executive functioning tasks, like routine cooking, become immensely challenging. Generally, you have all the energy of a sloth.
You are in autistic burnout.
And you’ve been in and out of it for six months.
Then you have a precious good brain day. It aligns, not surprisingly, with a good health day — you also have fibromyalgia, which is common in autistic women. It’s the winter solstice, so you take your emotional support dog to a nearby lagoon for some nature time.
Yes, it was only 15 minutes on the way to pick up your grocery order, and yes getting some sun did make your skin itch in a strange electric way — but it was a beautiful walk, so so very worth it.
You saw light dancing on water, herons perched on floating Christmas-tree structures, discovered your newly-adopted dog (Foxy) hates dust but has the cutest sneezes in the world, and watched her make a little girl’s day as they said hello, both all wiggly and excited at life.
After you put your groceries away at home, you’re amped to find that you still have some energy and cognitive function left to work — so you sit down to write, delighted at the sound of your own hands quickly tapping away at your keyboard.
But then a far more unpleasant noise starts, yet again.
At first, it’s just some music down the street, you hope it’s a passing car. But instead, it gets louder. The words on your computer screen begin to scramble in your head, you can no longer sort out their meanings, let alone write more of them.
The music gets even louder.
You shut your door and tiny window, so now there’s less noise but almost no natural light. It’s hard to decide if that’s more of a sensory relief or depressing factor. You turn on a lamp and your stimmy mind-happy-making music, try to focus. But it gets even louder. You give up on work and turn to streaming televised art to calm you down and drown it out.
But their music is louder than your TV. In your apartment. With the window and door shut.
Your brain is threatening to go white again, feeling like it could explode, waves seeming to pass through your vision— you know you can’t keep living like this. Literally. Cannot.
You head outside and find a car parked sideways in the road (blocking access to the street), with a nearby scooter playing music so loud you feel your teeth vibrate from 100 feet away.
There are 3 or 4 men standing around the car, their bodies postured in an intimidating manner. Bystanders stare at them, seemingly irritated but not saying anything. Your mind tries to tell you confronting them might not be safe, but you can hardly hear your own thoughts, fuck you can hardly think them — so this just causes more anger.
As you pass the blaring speaker, you lose control of your body and it squirms uncontrollably, which gets the men’s attention. You ask them to please turn it down, saying you can’t work; but they can’t hear you over the noise. You try again, your voice cracking, your hands shaking. They turn it down a bit. You walk to the end of the street, turn the corner so they can’t see you, then stop to try and get yourself together.
They fucking turn it back up.
You’ve lost it. You feel your eyes going steely and realize you’re already beelining towards the man who answered for everyone, your voice is saying things, you’re not even sure what.
The man turns it down again, then stares at you, arms crossed, chest out. Your response is squeaky and shaky, trying to explain autism and sensory processing and meltdowns and how this loudness is stealing your life.
He just smiles, even lets out a small laugh.
Which is what always happens when you get like this.
They quietly laugh. And smile at you like, “you strange silly thing,” then deny having done so if you manage to call them on it.
And every single time, it makes you want to give up entirely. Literally.
Your whole body starts shaking uncontrollably, you realize there are like 10 people now staring at you now (your neighbors!), and you can’t really understand what their faces are saying. (Fear? Pity?) You walk away, unable to hide the stimming and shaking, but holding your tears in until you collapse in your apartment.
Then you do your best to shake it off, knowing letting yourself spin-out would result in a full meltdown. (They are the same in adults. They are a complete loss of control, and they are horrifying.) Luckily, you’re very practiced at pretending you don’t feel like your whole world is on fire.
You stim it out, reflect on all the good points of your (comparably good) day, then use the adrenaline from the incident and your inability to recognize your emotions for the good — managing to have a relatively nice mellow little Yule evening.
Of course, the next day you’re useless, recovering. Your work can’t get done. The vegetables don’t even get chopped, which is fine because you’re too nauseous to eat them. You feel worthless, like the dirt on the bottom of that quietly laughing man’s boots.
But the day after that you wrote this, anyway.
You know your immense strength. You know your whys. You have your passion and drive. You know how to appreciate the good, and you have the will to fixate on it.
So you just keep on keepin’ on.
Thanks for reading! Writers are paid via claps on Medium (you can do up to 50/article), so if you appreciated the article I’d appreciate some “applause.” ❤
Stop Making Autistic People Mask
Being “weird” doesn’t hurt anyone, but pretending like we’re not different sure does.
TW: Suicide statistics.
Autism isn’t a disease, it’s a neurotype. A type of brain.
It’s got its drawbacks, that’s for sure, but it’s also got its perks. Just like neurotypical brains.
My brain is my brain, just as my thumb is my thumb. I can learn to treat my brain well to make it work better, and I can learn more effective ways to cope, but other than that—is what it is.
My brain cannot be “cured,” or turned neurotypical, and I sure as hell wouldn’t want it to be.
It is true that I struggle with living in our society due to sensory overwhelm, executive functioning issues, and being persistently misunderstood — but when my brain’s happy, I can also hyper-focus like a maniac, busting out great work in hours instead of days. I think “outside the box,” I am unique, I notice little things that others don’t, and I’m deeply passionate about my interests.
Autism is a part of who I am, just like being creative is part of who I am.
It cannot be removed, only hidden.
So, when people speak of “curing autism,” what they mean is the autistic person seems less autistic.
Autists who “seem cured” are pretending to be neurotypical in order to get by, something called masking. We do this because there are presently significant societal consequences for seeming autistic: people frequently make awful assumptions, tease us for being different, and presume that we’re inept.
As a result, those of us who are able to mask often do so. This involves mimicking others, endlessly practicing conversations in our heads/scripting safe things to say, and generally dampening our authentic expression — who we are — at every turn.
And while most people manage how they’re perceived to an extent, researchers describe masking in autistic people as “extremely effortful and challenging to one’s identity, unlike ordinary reputation management in typically developing individuals.”
And it’s often instinctive, an unconscious coping mechanism, so maskers often find ourselves having thoughts akin to, “Why on earth did I just say that?” further disorienting our relationship with the world, and with ourselves.
Experts have found that females are especially adept at masking, contributing to why the majority of diagnoses go to males. (There are also disparities in diagnosis rates by race.) Masking essentially entails the autistic person trying to act like a neurotypical, suppressing ourselves across the board — appearance, body posture/movement, how we speak, and what we say.
While masking can help autistic people fit in better, research shows that it’s awful for our neurological and mental health.
Masking and Neurological Health
As you might imagine, masking one’s neurology all day takes an enormous amount of energy. This can lead to debilitating fatigue and is often a factor in autistic burnout, which is a lot worse than it sounds.
For me, the worst of it feels like my brain has become useless — executive functioning issues become much worse and sensory and information processing goes kaput, rendering me unable to speak effectively, work, drive…really do anything but zone out in a dark room.
Autistic burnout is associated with negative impacts on one’s physical health, capacity for independent living, and quality of life; it’s linked with suicidal behavior, and it can last for weeks, or even longer.
Masking has also been found to lead to the experience of ‘thwarted belongingness,’ which, again, greatly increases the risk of suicide.
Suicidal ideation in autistic people is also estimated to be at 72%, autistic people are considered high-risk for suicide, and young people with autism have over twice the risk of dying from suicide compared to those without.
Because of these facts, insisting that an autistic person mask can literally be a matter of life and death.
Societal change in this regard will be a literal lifesaver.
Would it be so hard to just let us be weird?
In their TEDx talk, aptly titled “Everything You Know About Autism is Wrong,” autistic autism researcher Jac den Houting (they/them) says that getting their diagnosis didn’t lead to the grief one might expect after being diagnosed with a “disorder,” but great relief and even excitement, saying, “It was the best thing that ever happened to me,” adding that after diagnosis their self-perception changed, “I wasn’t a failed neurotypical person, I was a perfectly good autistic person.”
This quote speaks to neurodiversity, the idea that all kinds of brains are fine and should be allowed to function at their best capacity; and autism acceptance, which allows for authentic autistic expression and enables us to be our best selves.
It doesn’t hurt to refrain from writing someone off as weird or lacking intelligence, because they move, speak, or think differently. (It might even enable folks to feel freer to express their own differences!)
And it’s not so hard to ask a follow-up question if someone says something that doesn’t quite click right.
In fact, it’s just four little words: “What do you mean,” it’s easy. There’s no need to assume the worst about someone’s intellect, character, or capability.
In the video, Den Houting also says we need a paradigm shift in relation to how autism is viewed — as something wrong, a flaw to be fixed.
Instead, we need to accept that neurotypical isn’t the right way to be, just because most folks are. We need to acknowledge that there are advantages to having a variety of neurotypes at play; diversity strengthens a species, and neurodiversity in humans is no exception.
The fact that our society expects autistic people to fake normal is ableist, and it’s killing us. We need to be allowed to be our authentic, autistic, selves. It is not okay to shame us for it.
Being autistic can be compared to an unsettling feeling often experienced when traveling somewhere very different from your home country, continuously feeling like you’re not doing things quite right and being looked at funny, “othered” for reasons you don’t quite understand.
We’re everywhere, so no matter where you are — we’re from there.
Can’t you just let us be part of the local flavor?
What it’s Like to Learn You’re Autistic at 37
It’s like being from another country, but thinking you’re local.
Imagine that you hit your head while traveling, then woke up from a coma in another country. You cannot remember anything, and have no identifying information.
It’s kinda like in the movie Overboard, but instead of a rich bitch getting hers, it’s you, trying to fit into a verrrry different society.
But the thing is, even though it feels like you’re horribly out-of-place the doctors and experts assure you that you’re from there.
That you’re “just normal.”
You don’t question this assessment. The people of Allistic speak the same language as you, most citizens even have the same accent as you, and you look normal enough; but you’re still different, even after you learn their customs and ways of socializing (which you’d really prefer to do your way, even though you have no idea why your way differs).
You try not to wonder why you think so differently from the people around you, but it’s persistently unsettling.
You try now to show it, but you feel intimidated much of the time; it’s like they all know something that you can’t quite pick up on, for decades you try to do everything they do, but are still assessed as “a bit off,” continuously misunderstood, and written off for reasons you don’t understand.
You’d heard of this place called Autism, but it was usually mentioned by Allistics in reference to Autistic children, which were known for being very difficult to care for.
This confuses you. As far as you know, this is where you’re from, these people should be able to get you — but instead you’re frequently corrected for the strangest things, and never quite directly, they just look at you funny, or say things like “tell me how you really feel,” and “who *ARE* you?”
You’re unsure what these things mean, and even though Urban Dictionary only goes so far, you quickly learn not to ask about such things because if you do so, people will giggle at you in a way that feels mean. (Even the adults do this, which is especially puzzling because they preach very different policies to the children.)
At first you just ‘fake it to make it,’ sometimes it even helps you learn what’s up, and fitting into this world becomes a bit of a challenge, a game. But, sooner or later, you realize you kinda fucking suck at this game — and it’s stolen your life.
Even though you’ve been trying your hardest for decades, you still get the strange looks. You can’t hang onto friends or lovers. You get fired for reasons that don’t quite make sense, getting the feeling it’s because you don’t fit in quite right. Your roommates look at you like you’re an alien whenever you get too comfortable, which means you can’t really get comfortable anywhere.
You’re tired all the time, just getting out of the door becomes a struggle. And the stress is adding up. It affects your behavior.
You have meltdowns when yet another unexpected thing happens, usually you can hold it in until you get home — screaming and crying into your pillows, trying not to let anyone hear — but other times you just can’t do it. During these times it’s like your body is taken over by an angry two-year-old, screaming and crying, even injuring yourself in the expression of overwhelmingly negative emotions that cannot quite explain, or really even identify.
You’re sent to a shrink. In an almost-unbelievable twist of fate; he recognizes you from your home country, and informs you that you’re not crazy. You’re simply not from Allistic, as you’d thought; your home nation is actually a place called Autism.
The therapist says there are many ways to live life so that you’re more comfortable in your new country.
It’s a place where they’ve evolved a bit differently; their nervous systems are more sensitive, so they move and hold their bodies differently. They also do things like saying what they mean in a more direct fashion, exploring interests with obsessive gusto, as well as processing information in a different sort of way; which leads to delayed, but thoughtful, responses; and Autistics are offended by different ways of being than those who evolved in Allistic.
Coping with this unexplained differentness is what led to your mental health issues, as trying to hide how your brain works for decades isn’t great for neurological health.
You’re astounded. It explains everything. But how could this be true?
You’d heard of this place called Autism, but it was usually mentioned by Allistics in reference to Autistic children, which were known for being very difficult to care for.
You also heard it in reference to people that weren’t very well-liked, or had intellectual deficiencies.
You’re grown, socially do alright-ish, and fuck if people can tell, but you’re actually quite intelligent — so you’re very surprised and confused by this revelation.
But you’re also excited, as the therapist says there are many ways to live life so that you’re more comfortable in your new country.
You start telling people of Allistic that you’re actually from Autism, expecting curiosity and expressions of, “ah-ha!”; but mostly they just look at you with a blank stare.
Others say things like, “No you’re not, I know someone from there, and you’re not anything like them,” or, “You don’t look Autistic.”
Some people even get mad at you for claiming that you’re from there when they think you’re not. Others can’t seem to tolerate having a conversation about it, abruptly changing the subject or exiting the conversation.
You’re starting to feel like you’re losing it again. Was that shrink wrong? Are you really Autistic, or are you just weird? Is there any hope, or are you really “just crazy”?
Luckily, you join an online group for Autistic people to see if you relate to their posts.
And it’s fucking uncanny.
You’re tempted to write “Get out of my head!!” on every post, and would, but you’re a bit hesitant to say anything at all after recent experiences.
So, for weeks, you keep reading, keep feeling reassured, all while making a list of little behaviors and strange experiences you think have to do with being from Autism.
Eventually you post it — a list of things that seem to relate to being Autistic, containing several behaviors, experiences, and perspectives you’ve learned Allistics deem as “too weird” and worthy of being shamed.
As you await reactions to your secret-shame list, you feel anxious. What if they say, “Uhm, no, that’s just you.”
But, gratefully, your concerns were for nothing.
Other Autistic people comment on your post, and this time it’s them with feelings of, “Get out of my head!” — and you’ve never felt so understood in your whole life.
The responses make you cry with relief.
You are filled with hope that you can better learn to manage your life, meet people who love the whole you, and understand yourself in a more comprehensive way.
You can’t go back to Autism (Allistic has too many COVID cases), but now you’ve got tools to better navigate the world you find yourself in.
You’re exhausted, and there are still many challenges ahead.
For one, processing decades of experiences from this new perspective — which frequently stings — like nearly having died due to 1000’s of papercuts that sting as you apply ointment, letting the memories arise, and letting them go.
There’s so much to learn about your native ways of being, methods of better existing in the Allistic world you find yourself in.
It’s a lot.
But it’s a brand new day.
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.
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.
(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 method, pretending 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.
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.
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.
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.
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: