What We’ve Lost, or, What We Know (Autistic Pride Day 2020)

I. The Immutable Fire of Grief

We have always grown out of what others tried to define us as. We started writing our own stories more prominently in the 1990s. We always wanted our own narratives. A lot of that is lost: old listservs and expired blog domain names, and who got left out in the prominent record of our “short” history, and who was included. Sometimes we try to recollect it.

Other things we lost: stories, people, community members. Some recently, some to obscurity, some over a decade ago, many to direct and indirect violence. And so those of us who live have always been the immutable fire of grief, leaping in flames. But before the renewal of the forest fireweed, there’s us, floating down through the air as smoked out ash.

Whether it is the police targeting a Black autistic person or the school to prison pipeline, trans autistic people being denied gender affirming care, being abused at home or a victim of filicide, subjected to compliance-training behavior therapies like ABA, workplace discrimination, or a combination… Or maybe it’s something else, and – and – and…

II. Ash and Candles in the Dark

There is pain and beauty and darkness. I’ve said it before, and I’ll say it again:

I see beauty and pain and candles lit against the darkness as we mourn and try in vain to collect our emotions. I see the darkness pressing against the community… [but] I watch a community in pain sometimes come together in the most poignant of ways.

Ash slips through cracks and fingers so easily. Many of the people we’ve lost we’ll never know. In the cases of the people we did know, sometimes it still wasn’t enough. Though I burned myself out at least two years ago and haven’t really been as present since, I am not suggesting we give up. Rather, acknowledging the trauma weaves a stronger community.

Pride and acceptance aren’t the only pillars of the autistic and neurodiversity community – or any community. There’s the history and what came before, to remember, honor where proper, and learn from. There’s the coping and community support. There’s the fighting with steep odds and the resting, and the myriad contributions to a community’s culture.

There’s also being alive, woven into the community tapestry by sheer existence. Because what is a community without its people?

Hi all! As you may or may not know, I’m also a social media volunteer for the Autistic Women & Nonbinary Network (AWN Network). One of the community resources we make available is the Fund for Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment (or the Autistic People of Color’s Fund for short). The fund exists to provide direct, individual financial aid to autistic people of color for a variety of needs […]

[…] If you’re able and would like to contribute in a way that will support the quality of life of autistic people materially and very, very immediately, the link for more information and how to donate is here.

[Click the “via” link to go to full post.]

via Donation request–Autistic People of Color’s Fund — Chavisory’s Notebook

Letters sent re: #StopTheShock #WeAreStillWaiting

Today (4/24/19), is the day of action about the GED shock device used on disabled ‘students’ at the Judge Rotenberg Center in MA. Learn more here.
CW torture, electric skin shock
 

To the FDA

CDRH-Center for Devices and Radiological Health
Food and Drug Administration
10903 New Hampshire Avenue
Silver Spring, MD 20993

1 (800) 638-2041

DICE@fda.hhs.gov

To whom it may concern at the FDA,

My name is Kit Mead, and I am from Baltimore, MD. I wanted to ask about the proposed ban of the GED device used at the Judge Rotenberg Center in Canton, MA, which uses electric skin shock as an aversive on its disabled ‘students’.

The FDA originally concluded a ban should take place in 2014. Since then, ‘students’ continue to be shocked. I urge the FDA to ban the GED shock devices used at the Judge Rotenberg Center.

As a disabled disability advocate, I was relieved to hear in December that the FDA plans to finalize the ban. But people with disabilities are still being tortured at the Judge Rotenberg Center, and time is of the essence – not one more person should get hurt. When will we see the regulation finalized?

Thank you for taking the time to read and respond to my email. We are still waiting for the ban to be enacted and hope to see it finalized immediately.

Sincerely,


To Congresspeople

[Insert greeting here]

I wanted to write to let you know about a legal form of torture for autistic and other disabled people in the US, the Judge Rotenberg Center in Massachusetts. It uses a GED electric skin shock device on its ‘students,’ who live in reality in an institution.

In 2014, the FDA held hearings on whether to ban the use of the GED/electric skin shock as an aversive. They concluded such devices should be banned. In 2018, the the FDA finally released a Unified Agenda stating they were working to finalize the rule that would ban the GED used at the Judge Rotenberg Center.

The FDA has continually said that they are working on finalizing the rule, but we need Congress to hold them accountable. You can find more information and a sample letter to the FDA at autisticadvocacy.org/fdaletter. Thank you for taking the time to read and respond to my email. I depend on you to stand up for people with disabilities – can I count on you to write to the FDA?

Sincerely,


 

I sent my letters to Congresspeople using Resistbot. (Resistbot also has an ‘editor’ function where you can submit a letter to the editor of your local paper, which I did).  I used my own words and some phrasing from ASAN templates. Learn more about the issue and what you can do here.

autism acceptance month version… ??

[Note: This is prose-poetry.]

I’m not going to lie when I say that I don’t know what to say, that I’ve recycled all my words  for autism acceptance and neurodiversity until I have nearly nothing left to say

and I know remixing scripts is very autistic,  echolalia and pallilalia and all the little things we do when we say anything, whether spoken or movement or using AAC devices.

Maybe I know. Maybe I know. Maybe I know there’s always something left to say, always an argument worth having, a blog post worth writing, an action worth taking.

Maybe I have my own reasons for not always having something to say, having that argument, writing that blog post, taking that action.

I have always loved this community for its rich complexity, despite all its all flaws and imperfections, its exclusions and inclusions and its failures to do justice by swaths of us, but sometimes its championing of all of us and trying to do better.

For all the pride that lights up screens across the globe. How we have worked to take what wasn’t for us and tried to make it for all of us.

I have, often, nearly nothing left to say.  Maybe I know. Maybe I know. Maybe I know that I don’t always have something to say, have to have that argument, write that blog post, take that action. I know I have always loved this community and sometimes that means

I have

nearly nothing left to say.

Less socially interested people are still full human beings

The recent study “Being vs. Appearing Socially Uninterested: Challenging Assumptions about Social Motivation in Autism,” and the resulting New York Times article, got me thinking about the value we place on socializing. The article does a good job, I think, on telling non-autistic audiences that we are just as human as they are. That autistic people need to be met halfway just like anyone else. That our body language and communication and social interests displaying differently than others does not mean it is lesser.

So I don’t really have a bone to pick with that. Mostly, I just got to thinking about the immense value we place on socializing in the first place. There is, of course, an expectation that people should engage in socialization. And to an extent I think most or all people want and need it. But sometimes I remember that I was fine in elementary school before I acquired any friends I had frequent contact with, and I was really happy by myself. All the time. Reading books, writing stories, playing outside in make-believe, playing with my beanie babies. I wasn’t actually particularly wrapped up in social relationships until the third grade. Even then, it was the teacher who decided I needed company and sent another third-grader over.

And even now, I definitely have more friends than I used to. But I am often only interested in socializing within a certain circle of people. Small talk is the bane of my existence. I don’t really engage in lengthy conversations with acquaintances, even. I crave social interaction – but I mostly want to socialize with the people I feel most comfortable with. 

I know socialization helps people relate to and care about each other, most likely. I find it easy to still care about someone even if we don’t talk much. That doesn’t make me unique or better, it’s just how I work. I do understand there is value in socialization as a tool for compassion. But just because someone really isn’t interested in socializing doesn’t mean a person is bad. Less socially interested people have equal value to more socially interested people. We have the ability to be compassionate. We are still full human beings.

Julia has a home on Sesame Street, a world that’s always tried to include everyone

Guest Blog Post by Sara Liss

Sara with Julia Muppet

[partial view of Sara, who has dark hair in pigtails and is wearing a dark pink shirt, smiling. She sits with a Julia doll, holding onto the doll’s hand. The Julia doll has bright orange hair in pigtails and green eyes, looks happy, and is wearing a pink shirt.]

I wish that Julia the Muppet from Sesame Street had existed when I was a toddler and first learning (not very successfully) to interact with other kids. I was desperate to play with someone other than my baby sister, her baby playmates, and our family friends. I didn’t know how to connect with the other kids my age, and most of them preferred for me to stay away. One or two of the girls at my preschool either liked me or took pity on me, on their own or with adult encouragement, and were my sometimes-playmates. I don’t think my pre-school teachers assigned them to me as playmates, the way my teachers did every year from pre-K to 4th grade.

I can say, though, that the only social interaction was the time my not-quite-friend Melissa invited me to play with her outside and then told off another girl who didn’t want Melissa to play with me. I guard that memory carefully, clinging to it as I try to forget the times I stood at the play kitchen or sand table minutes after the other girls had used them, trying to pretend I wasn’t alone.

I can remember most of the Sesame Street episodes and skits broadcast between 1989 and 2000. I’m 29 years old and my youngest sibling is 23, and my brother’s occupational therapist and later babysitter had a burning hatred of Barney, which means I know the songs from that era word-for-word almost two decades later. Back then, there were no openly autistic faces to us to latch on to as role models.

Sesame Street, so progressive that it moved its new programming to HBO to keep social conservatives from trying to kill the show entirely, was no stranger to disability even then. Linda, a Deaf woman who debuted on the show in 1973, already teaching children how to sing in ASL back in 1976. Tarah, who had osteogenesis imperfecta, was showing off her skills as a wheelchair ballerina in 1993. But there still wasn’t anyone on Sesame Street with disabilities that also affected their minds.

(In the world of disability inclusion, disability is always physical first and mental/cognitive second, unless there’s been another mass shooting and we’re desperate to find something besides a gun to blame.).

When I was a child, Sesame Street coded characters as autistic–the Count, of course, and also sometimes Bert. Most autistic kids identified with the Count. (Personally, I found him terrifying, and may or may not have run away from him and his scary mountain and scary bats at least once. He wasn’t quite as scary as Ursula from The Little Mermaid, though, so I still have “The Lambaba” word-perfect two decades later.)

I myself adored Bert, and, according to family lore, actually teethed on his nose. Most of all, what resounded with me was his bemusement at Ernie’s version of logic, which made literal sense and was reasonable from Ernie’s point of view, but always led him to the wrong conclusion. (The cookies in bed sketch, https://www.youtube.com/watch?v=YpozspIMH9E, is a classic example.)

I had another kind of kinship with Kermit the Frog, who wasn’t a resident of Sesame Street but appeared in enough skits as a reporter covering Fairy Tale News for me to claim him for this essay. I was drawn to his high anxiety levels, his endless attempts to get everyone to just *listen to him* to get everything in order for once in their lives, and the way heightened emotions stole his words and left him with screaming, flailing, and flapping as his only way to communicate.

But Kermit was never coded as autistic, not as far as I can tell. He was rather a giant ball of anxiety, almost certainly depressed, in an on-and-off relationship with an amazing woman who could have been a great partner for literally anyone else. [This is not an essay on the many, many wonders of Miss Piggy. Nor is it an essay on how the stereotype of a hen-picked husband needs to be rended from tip to toe and thrown to the piranhas. I can write that essay some other time, if anyone is interested, but I’m currently wearing my Joyful Autistic hat, and the Raging Feminist one will have to wait.]

Julia is different. Julia is openly autistic and doesn’t apologize for it. She has a home on Sesame Street and doesn’t need to be “fixed” to keep it. She’s not a single obsession, a savant, or a machine who needs to be programmed with the “right” words or social skills.

I look at Julia and see an autistic girl–an actual GIRL–who STIMS! and who is EMOTIONAL, so much so that her body can’t contain it! who USES HER BODY TO COMMUNICATE HER FEELINGS! She doesn’t need speech to express herself, and can say more with her body than words can contain, even when the NTs foreign to her world don’t understand what she means. She’s silly and goofy and strange and people LIKE HER FOR IT.

My new friend Julia has *real* friends, friends who didn’t need anyone to tell them that Julia was lonely because she was different and needed a special buddy to help her feel the same as everyone else.

Her friends think of her as an equal, not as a Special Task the grown-ups trust them with. Her friends don’t exploit her oddities for their own amusement or make fun of her in ways they know she can’t understand. They don’t leave her in favor of her “normal” friends when she breaks social taboos, and don’t leave her when she can’t answer their questions about who she is, or how she thinks, or why she can’t be like everybody else no matter how hard she tries. Her friends are the non-disabled peers I loved and followed as a child but could never seem to keep, the people I broke by getting too close when I was hopelessly broken.

It wasn’t until my second year of college that I found friends who embraced me and the autistic parts of my soul but weren’t autistic themselves. Calling them NT is probably a stretch. I’m pretty sure there’s *something* ND about people who creep along public streets in broad daylight pretending to be a raptor, complete with sound effects, and completely sober; and all of us had trouble passing in so-called normal culture.

They were and are more like me than any non-autistic person than I’d ever known. They love my flappy rants about administrative law at New Yorker speed, the same way I love their shared horror of the Twilight movies. We’re entertained, sometimes enraptured, frequently clueless, and sooner or later, baffled at why we’re still talking. They’ll probably never know why I’m so obsessed with the Chevron doctrine, and I will never understand what possessed them to go to the midnight release of the first Twilight movie. And that’s okay. We’re oddballs, but that’s a feature, not a bug.

I can’t be certain, I don’t think I’d have spent 20 years waiting to find friends who could love my autistic soul but not have their own to match if I’d met Julia the same day I met Big Bird, Mr. Snuffleupagus, and Elmo. I don’t think I’d have gone 29 years without being diagnosed, making 3 separate trips to Albany to be evaluated just so I could prove a point. I don’t think my dad would shy away from me every time I talk about being autistic because he’d thought my mind was fine and never considered my social issues might be so “bad” I needed a disorder to describe them. And I don’t think my first female fictional friend would have been Baby Bop just because she was a girl, and there weren’t any girls on Sesame Street.

Sesame Workshop is finally teaching kids that autistic people are people worth the same as anyone else, even if their minds aren’t fine. Her Muppet friends Elmo and Abby know that she’s their equal. She can love and be loved without trying to make her life a game of pretend, a game there’s no way for her to win. She speaks with her loud hands and loud arms and loud body. She speaks in the wordless sounds she makes and the rest of the world tries to interpret, sometimes correctly, sometimes wrongly, and sometimes looking for meaning that words can’t express at all.

There’s a lot of Julia in me. I see her and I want to keep her safe from a world that sees difference and tries to fix it, even when there’s nothing to be fixed. I want to protect her from a world that demands conformity at any price, and punishes us when hurting ourselves is the only way to comply.

At the same time, I look at Julia and see a girl like me in the safest place I’ve ever known, who sees and does things differently and who isn’t scolded for it. I see adults who see her as a person, a *disabled* person, autistic through and through, and still knows she exists for her own sake. I see a fictional world that’s taught tens of millions of young children over generations numbers and letters and skipping rhymes and phrases like “please” and “thank you.” I see a powerful force in children’s education telling Americans everywhere to welcome me as I am. I see a world that’s always tried to include everyone, desperately trying to teach us to better people, and see that in this better world, there’s a place for me.

I wish that when I was little, I’d seen a girl like Julia on Sesame Street, and seen Sesame Street embrace her. I’m not a child anymore, but I’m so, so glad that she’s here now, and here for me.

Autistic pride is my rebellion (or, why I can’t celebrate Father’s Day)

Yesterday was Father’s Day, which I cannot celebrate. Today is Autistic Pride Day and June is LGBTQ+ Pride Month, which I embrace. It was also the Baltimore Pride Festival yesterday. I put on a Noncompliance is a Social Skill shirt and made an “Autistic Disabled LGBTQ+ Pride” sign, and trekked off. For some, those celebrations aren’t mutually exclusive, but for me, Father’s Day is not one I can celebrate with the others.

“it was said they loved the stars”

It was said they loved the stars:

Enough to carry stardust ever so gently in
pockets lined with meteorite shards, wrapped
in wax paper for fire-starting, a return to origins.

I also wore a B’tzelem Elohim genderqueer Star of David patch. I am a genderqueer and nonbinary Jew-in-progress. B’tzelem Elohim. [Created] in the image of G-d. Not a mistake. Never was, never will be. Some in my life have said otherwise, including my father. I am tired of keeping it a secret online, of indicating the existence of a trauma history but being afraid of saying why.

Enough to try and forgive the father who left burn
marks in the wake of their scarring scorching (re)actions
Who sharply laid blame at their feet and swore
on the flames consuming all the mistakes made

Some in my life have said I’m a mistake and worthless, including the reason I cannot celebrate Father’s Day. I did try to work it out and possibly forgive him, but he never was sorry. I was never the child he wanted. I was never “normal.”

I had a hard time making friends. I said things that didn’t match my tone. I took things literally. I went on long, excited infodumps about extremely passionate interests of mine. I had meltdowns. I had shutdowns. I was fidgety and hyperactive. I had attention issues and problems at school. I had a hard time with conventional communication and reading body language/tone. And over time, I became insolent, aggressive, and volatile, following years of his verbal and emotional abuse.

My disability traits don’t actually matter here, because I never deserved it. Sometimes, that’s hard to remember, because all of that told me I don’t have inherent value as a person. And other things exacerbated his treatment of me, like the occasions he had too much to drink. Through the years, I blocked it out. It floated back in late teenage years, when it was safer to do so. So I tried talking about it: “When you do X, I feel Y.” Then: “If you don’t stop yelling at me, I will end my visit and go home.” I concluded that nothing I did would make that happen. After college, I finally gathered up my nerve.

And also enough to face their father and walk away from the
words and epithets of (dis)grace and turn their face to
G-d instead, found among the shul’s engraved Stars of David
And in the Etz Chayim prayer’s high note of A-do-nai,
And in notes before and after, calling upwards

Enough to embrace what is cold and distant to our eyes,
points in space where no one could ever reach, the fiery fusion
of atoms we can’t get get close to.

During college and since then, I’ve relied on a multitude of things to get me through. I found pride in being disabled and autistic. I found words for my gender identity. I made and still have friends. I stopped talking to my father. I adopted a cat. I found a psychiatrist who treats me like a person, and believes me about things. I began converting to Judaism, where I am finding coping methods in the ritual and prayer.

And I will never be able to celebrate Father’s Day. I hope everyone knows that it’s okay if they can’t, either. Or if they have to pretend so nothing bad happens. Or if they just have complicated feelings. I hope you can celebrate whatever you need to, commit whatever acts of rebellion you need to.

Autistic pride is my rebellion; the personal and the political. Not just against cure culture and ableism, but everything he disparaged. Autistic pride says my life is mine, that there are so many things he never took from me. That if I have pride in being autistic, disabled, and LGBTQ+, maybe I can have pride in the rest of myself. I try to celebrate myself, in the hopes that I will eventually feel like enough. I try to celebrate myself, because there are so many things I am and so many things I love.

It was said they loved the stars
It was said they loved the stars, and it was enough.

The shape(s) of narratives that spill and flow over neat lines and boxes

Resonance and representation in The Shape of Water

The Shape of Water (2017) and its relationship to disability narratives is undeniably complicated and at times flawed.

Some of us who identify with parts of the film and characters, have, as Emily points out on Twitter, problematic lives. My interpretation of problematic is operating outside accepted narratives (Emily may have a different definition; this is mine).

The Shape of Water follows Elisa Esposito, a nonspeaking woman living in 1962 Baltimore. While hearing, she uses American Sign Language (ASL) to communicate. Her friends are Giles (a gay artist) and Zelda (her Black coworker and sign interpreter). She works as a cleaning woman for a high-security government laboratory. There, she bonds with the facility’s newest “Asset,” an amphibious, humanoid creature. They fall in love. Elisa, Giles, and Zelda then work against the laboratory to return the “Amphibian Man” to the water and save his life.

There have been critiques about linking disability to otherness. But what happens when you’re different all your life, even if not identified as disabled?  Autistic writer and reviewer Sarah Kurchak pulls the following quote from the film’s director, Guillermo del Toro, in Vanity Fair: “monsters are evangelical creatures for me. When I was a kid, monsters made me feel that I could fit somewhere, even if it was… an imaginary place where the grotesque and the abnormal were celebrated and accepted.”

Further discussion of (in)humanity and monsters

There have been critiques about linking disability to monsters. So what happens when you’ve always felt at least slightly inhuman? Kurchak notes in the review at Consequence of Sound that: “When the world sometimes tells you that you’re a monster, and when you love movies but can’t see yourself in the heroes, you might start to find yourself identifying with the monsters. And then you might start to find yourself wanting better for them. So you create your own stories for them, and for yourself.”

Chavisory says on Tumblr: “Whereas a lot of us who didn’t have those narratives…our minds filled in the blanks in some pretty interesting ways. Including various iterations of not being completely human. Obviously it’s a problematic movie, but I readily and pretty unconflictedly identify with aspects of both Elisa and the Amphibian Man.”

So, what might happens is that you identify with Elisa. Or the Amphibian Man, or both. Elisa, despite it being hinted that her childhood neck injury is the cause of her not speaking, is likely autistic. Maybe the film resonates with you and the representation is meaningful. For me that happened in the casual stimming, the way she moved, and within the first fifteen minutes, the scene where she first meets the creature. I saw in her and on her face the realization that she’s found another society deems “other.” The wonder of immediately needing to touch and use her hands to complete the recognition.

Elisa meets the creature

The protagonist Elisa, a dark-haired woman, leans over the tank with the amphibious creature. She has her hand hovering just above the glass, about to place her palm on it.

Watching the film, I had the realization I’ve found another society deems “other.” I found representation in The Shape of Water. I have always been the Other.  I have been the Other to the point of having a trauma history. And people are now saying it’s not representation at all because it is harmful in messaging. It is not without problems. It is still representation. And I have to wonder how many of these people have ever felt more than a touch inhuman. (If that’s you, then we can maybe talk about it differently).

Elisa found another outcast to see the possibilities in. Are you going to tell me that society should not start addressing how it treats those seen as monsters? Are you going to tell me that I have never felt inhuman from all the things the world has done and said to me, and that I do not deserve to have someone look past what has been painted on me as Other?

I do not think the film is perfect. I think it is still representation. But people are saying it is not representation at all. And when you say that, what I hear is that

those of us who struggle with feeling human in the face of the world, who sometimes identify with the Other and embrace it as a tool to survive, whose narratives and relationships to representation are messy and muddy the waters… should stop trying to find ourselves in representation or anywhere, our very existence and attempts at representation faulty.

We’ve been told that we’re faulty enough already, thanks.

.  .  .

Further Reading

Autistic community issues: “Gatekeeping words” edition

*Update: The autism ask blog has posted a well-worded apology after taking the time to consider many of our thoughts and feelings on the matter.

Tumblr folks: This is an expanded version of my other post.

There has been (another) recent kerfluffle regarding language (this instance is on Tumblr). Specifically, people are gatekeeping the term “special interest”. An autistic person decided that an ADHD blogger who manages a blog for ADHDers was incorrectly using the term special interest due to her being non-autistic. Despite her providing evidence that it is not autism-exclusive, the person went to an autism ask blog. There, they were told the term is autism-exclusive. The autism ask blog is wrong.

With that context: I am an autistic person with ADHD, and I have a request. Could you stop telling me that I have to use two different words to describe the same experience I have that I have no idea which “diagnosis” it comes from? (By the way, brains are not partitioned like that, so my neurology is affected by both, sometimes in very interchangeable ways that you don’t know which one is which!)

And the autistic community, as one blogger​ points out here– has a pretty long history, and we haven’t been this exclusionary with words from the start. I have put together and managed submissions for some of that history at ourautistichistory​ (Autistic History Month). And some of it is probably lost as domain names expired or the list servs went defunct. But the moderator of the actuallyadhd​ blog, who has ADHD, has been involved with list servs and later platforms of the autistic community since 1994. She is an autistic cousin, which is a decades-old term that refers to someone “who is not NT, is not quite autistic, but is recognizably “autistic-like” particularly in terms of communication and social characteristics.”

To ignore that fact, along with the first blogger’s note that these kinds of words have not been considered exclusive to the autistic community from the start – which is roughly three decades ago – is negligent. A community should know its history, and we need to know our history to work for change. 

And it tells people that we are not a community that welcomes people unless they share our specific neurotype. It tells many people who are wondering if they are autistic that we are a community who will not welcome them. That may make them afraid to approach us, or learn more about autistic community and autistic culture. It tells people we are a community who is willing to gatekeep, and that is not what I want people to think of the community I love and fight for.

Expecting ways of communicating to define an Autistic person

Feedback is welcomed, but please see the bottom of the post first.*

Autistics have largely argued that no one should assume we are alike. Our differences include communication styles, external presentations, or supports needed. Being human like anyone else, we also differ in goals, interests, and hobbies. We’re all still Autistic, but we need others to stop basing all their assumptions on that. In particular, people make assumptions from communication styles. Some of us communicate with significant support, little support, or somewhere in between. Some of us use assistive technology and some of us don’t. Some of us don’t have access to language most people understand. And defining us based on communication style we use (or off any one or two traits) is unhelpful.

Yet it’s not just an issue of non-autistic people making snap judgments. Some Autistics who talk neurodiversity on the Internet also like to ascribe certain Autistic traits to select narratives. One such narrative is that those of us who identify ourselves as speaking Autistics tend to be non-visibly autistic and have few direct support needs. Often, the narrative includes the idea that we’ve learned how read non-autistic people’s behavior or at least mimic it. Many posts intended to be helpful for community members are written through this lens. There are Autistic people who fit this narrative, and there is nothing wrong with that. The issue occurs when the narrative doesn’t make room for other people’s stories.

I identify myself as a mostly-speaking Autistic, and I don’t fit well into that narrative. My communication style is assumed to be “expressive” because I talk out loud most of the time. I’ve written about it before in the blog post “You call me expressive and miss the struggle it takes.” There, I wrote about my personal relationship with speech, and the incorrect inference someone made about me. They decided that I couldn’t have many support needs or real struggles with communication out loud.

But I do have a number of direct support needs, somewhere between “needs little to no direct support” and “has high direct support needs.” My mother, who lives several states away, attempts to provide what support she can, but I honestly need more in-person help. I am able to take care of my cat, but taking care of my own needs is harder. I am forced to navigate a system and a world not designed for me with very little built-in to help me. I also am not good at reading people, and it’s a challenge to mimic non-autistic people’s social norms. The majority of the time I also display body language and speech patterns that are visibly Autistic and/or neurodivergent.

Not all autistic people who speak the majority of the time are like each other, and it is harmful to assume this falsehood. I received and still get little support, in the past (such as during college) and now, when I need it. Many posts I see that are intended to be helpful for the type of Autistic they assume I am are actually not, either. And it harms Autistic people with higher support needs than mine, as well. The narrative doesn’t leave much room to presume competence (which is different than valuing a person only if they have some secret gift, which many seem to base their respect around). Few posts in the community are geared to be helpful for high-support Autistics who are very visibly so (Yes, I have admittedly written these posts before, and will probably mess up again in the future).

People who espouse this narrative seem to assume that other Autistics have the same struggles and the same strengths – and therefore there is no room to even consider what high-support Autistic people, and other people who don’t fit the narrative, can contribute to our movement. Non-autistic people should stop judging us from one or two features. But some in the Autistic community would do well to stop, too.

*(For the record – no, I’m not saying most of the people in the community make these kinds of assumptions. Just some do, but it still really needs to stop).