The NYT antidepressant article: what it does – and doesn’t – say

There’s a New York Times article on mental health – and reactions to it – making the rounds on my social media feeds. The article under debate is “Many People Taking Antidepressants Discover They Cannot Quit.” And the NYT has a less than stellar track record on mental health. They’ve run articles on whether we should construct a new wave of “modern asylums.” Based on people’s reactions, and the NYT track record, I mostly expected the antidepressants article to be shaming medication use. It wasn’t. It discussed antidepressant usage and prescribing habits. And as the title promises, the people who can’t go off them, due to extensive and protracted withdrawal symptoms.

It’s not necessarily well-written as a public health article. And it is not an article that is telling people to stop using their medications long-term. Yet the discussions I’m seeing are talking about med shaming and taking meds long-term. Which, if you feel like long-term medication is most beneficial to you, you have every right to it. At least some of that discussion, I think, is rooted in fear that the article will contribute to medication shaming. I do get that. I’m on meds, including an antidepressant. I like a couple of them. I don’t like it when people think I shouldn’t have access to them because they think all meds are the same or evil.

But the article is about effects of withdrawal when people try to go off of them. It is about people not knowing these risks beforehand to make an informed choice. It is about doctors not providing informed consent. My perspective is shaped by the fact that I had been medicated for a long time before I was able to assert more control. Not “taken medication,” but “medicated,” with little information on the drugs I was being told to take. I am now on two that I cannot taper off of right now, because I’ve been on meds for so long. I know; I’ve tried. So: informed consent is a thing that should exist.

The article discusses people being unable to get off medications, and the response I’m seeing is to talk about it being okay to take them long-term. But not everyone on antidepressants finds an adequately stabilizing one. Not everyone on antidepressants wants to be on them forever. People get to make choices about if what the medication is doing is worth it. If a person wants to go off of a medication, reassurance that it’s fine to be on it long-term is a response I do not see as helping.

So I find it disconcerting that people would turn the subject to the stigma of taking long-term medications here. We need to be talking about side effects. We need to be talking about withdrawal. We need research on effects – positive and negative – that can help guide informed consent and people’s medication choices. I do understand stigma and medication shaming exists. If people do that in response to this article, or anytime, it’s inappropriate. And I have been on the receiving end of medication shaming, too, and it’s demoralizing.

But I don’t think criticizing the article for what it doesn’t say – as a preemptive defense against med shaming – is useful. We should critique and criticize based on some of its actual flaws: it is written with, perhaps, some sensationalism. It lacked clarity at some points. It may deter some people from finding something that works for them. But it does not argue against people’s personal choices to stay on antidepressants long term.

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Stephen Hawking also used AAC: notes on the disability discussion

Acknowledge Hawking’s AAC use – and also know and remember that everyone deserves access to communication supports.

Stephen Hawking, the disabled theoretical physicist and cosmologist with ALS, recently died at the age of 76. I love the stars and space: enough to embrace what is cold and distant to our eyes, the fiery fusion of star atoms we may never get close to. Sadly, this love has not allowed me understand theoretical physics, even in layman’s terms. 

But I’m disabled, too, so I understand parts of that bit. I can talk out loud, but not always. What I say may not always be what I mean. I try to write more than I talk. I can walk, but it’s often painful, and limited to half a mile at once. I don’t use AAC or a wheelchair full-time. My main advocacy has been with the autistic and I/DD community. My values are rooted in access for everyone: people who don’t have adequate communication supports, and people who use AAC, even if they didn’t turn out to be geniuses. 

So that’s where I’m coming from for the rest of the post. Okay? Okay. I have something to say about the disability community’s conversation on him. We’ve been fighting the erasure or denigration of his disability by non-disabled people, including the media.

(For those who missed it: there is a lot of “in spite of disability” and “free from his wheelchair” language when his disability status is discussed in the media. Hawking’s disability was an important part of who he was. He achieved all his work informed by his disability, not in spite of it. And death is not better for disabled people: support us in life, not laud our deaths.)

Which, yes, be angry about that! But many of discussions only note his power chair use. Which the erasure of his power chair is a problem. But I often do not see a similar emphasis on his AAC use and how that’s an equally valuable part of his disability experience. I want you to start valuing his AAC as much as I hear you talking about his power chair. I am not asking for you to prioritize him being an AAC user over that. I just want you to grant his use of AAC the same level of importance (Some of you are, and I see you! Thank you).

Hawking himself stated access to communication supports are critical to make available:

I want to use my high profile to raise awareness of issues around disability and communication. Recently, my communication system broke down for three days, and I was shocked by how powerless I felt. I want to speak up for people who live their whole lives in that state. My hope is that the kinds of technologies I have trialed and helped develop will become easily and cheaply available to all who need them. We need to make sure this technology becomes available to those who need it.

Hawking also freely acknowledged the significant privilege he had: “But I realize that I am very lucky, in many ways. My success in theoretical physics has ensured that I am supported to live a worthwhile life. It is very clear that the majority of people with disabilities in the world have an extremely difficult time with everyday survival.” 

Beyond Stephen Hawking, access to communication supports is a right, for everyone. 

So are things like presuming competence, which doesn’t mean “treat people like they’re not disabled,” but “treat them like a person with strengths and support needs.” As Julia Bascom wrote in 2014 about a thing that happens sometimes involving autistic children with high communication support needs:

Autistic child is presumed to be very significantly intellectually disabled. Years later, a method of communication is found that works for the child, and it turns out that they are in fact very smart…. The parents are overjoyed. They begin talking about presuming competence, the least dangerous assumption, that not being able to speak is not the same as not having anything to say…

…These revelations, about presuming competence, human dignity, and the least dangerous assumption—they don’t apply only to kids who are secret geniuses. They apply to everyone. They are the most important for the kids who really do have intellectual disabilities, who really can’t read or use full sentences and who really do need extensive support.

Make sure you are acknowledging that Stephen Hawking used AAC as part of his disability experience. That disabled people who aren’t theoretical physicists use AAC, too. That disabled people who aren’t secret geniuses and don’t have adequate communication supports have things to say. The potential for, or existence of, “genius” and “gifts” is not why people have the right to communication supports. We all have decisions to make, along with needs and desires to express.

We all have something to say, no matter: our level of education and employment status, how much support we need to make decisions, if we rely on social safety nets or not, what disability we have and how it impacts us. We all have something to say, no matter what.

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

Prejudice after mass shootings is a well-defined pattern

Alternate Title: This autistic with mental health disabilities would like others to develop better pattern recognition skills.

East Coker

Image text:
You say I am repeating
Something I have said before. I shall say it again.
Shall I say it again? 
-From T.S. Eliot’s “Four Quartets,” Part II: East Coker

I have an inordinate fondness of T.S. Eliot’s poetry. I have significantly less fondness of repeatedly having to tell people to stop blaming mental health for mass shootings. But yes, I shall say it again. Because a 2017 Georgetown Public Policy Review article by Delaney Luna notes that “a 2015 study found that 63% of Americans blame untreated mental health problems for mass shootings.” Because “contentious studies associating mental disorders with violence are often cited as fact, overstating the propensity for mentally ill individuals to commit violent acts, and promoting these ideas to the American public.”

(Unfortunately, often gun control legislation introduced in the wake of shootings targets disabled people. There is clearly a mass shooting problem, but any solutions need to be non-biased and not ableist. The public policy article does set up the dichotomy of blaming mental health vs. gun control, so keep the above in mind).

So yes, I shall say it again. Stop scapegoating social minorities – people with mental health disabilities – and evading the real problems. There are patterns to how people respond to these incidents, and patterns behind the motivations of perpetrators.

Fact: There is usually a history of things like domestic violence or white nationalist supremacy discovered in the backgrounds of those who commit mass shootings. Response: Many people, including government policymakers, decline to do anything but blame terrorism (predominantly if the perpetrator is or thought to be brown and Muslim), or mental health (predominantly if the perpetrator is white). It is still apparently easier for many people reporting news coverage, or policymakers, and others to deny these patterns. They believe it is better to scapegoat than get at the real problems… better to try and stop us from having rights.

The discussion for the most recent incident in Parkland, Florida revolves around mental health. There’s also talk of white nationalist ties. Which, great, please talk about white nationalism being one of the factors involved. White nationalism – as recorded by the Southern Poverty Law Center – has a body count even as its proponents play respectability politics in some arenas. But some coverage is talking about white nationalism – and mental health – in the same conversation, and it needs to stop. One Tumblr user puts it well in their post “Extremism is not a function of mental illness.”

Most extremists are average people in a socially vulnerable position that extremist ideologues can exploit. People who feel disenfranchised (legitimately or not.) People who are socially isolated. People who are scared, or angry, or feel cheated.

This isn’t mental illness: this is a social problem.

This is exactly what happens every time social change comes to a head.

It becomes violent when someone feeling threatened by the changes decides it’s time to put the social change back the way it “should be.” It becomes violent because these people are told by their extremist social group that the world is getting out of line because they haven’t stopped it.

Stop saying, directly or indirectly, that only people with mental health disabilities can be responsible for atrocities and violence. We are not, in fact, more likely to be the perpetrators of such violence. Luna notes in the Public Policy Review article that “only about 3 to 5% of all US crimes are committed by individuals diagnosed with a mental illness, and fewer than 5% of all gun-related killings between 2001 and 2010 were committed by individuals with diagnosed mental illnesses.”

Stop saying it when most of us are engaged in such a struggle to survive already. Fun fact: I just got out of a psych ward again within the last few weeks. Surviving is hard.

Diagnoses from hospital stay.

[Partial screencap of diagnoses from my most recent hospital stay, including autism spectrum, suicidal ideation, and bipolar disorder – unspecified. Name of hospital and dates removed.]

Stop saying extremism and its resulting violence is the result of mental health disability. Stop tying mental health disability to white nationalism, the way that’s being done now after mass shootings and whenever the Trump administration does something terrible and/or linked to white nationalism.

So yes, I shall say it again: Stop trying to tie mental health disability to all the occurrences you pretend are unexplainable by anything else.

We’re already dealing with enough without scapegoating being pushed as “mental health reform” and being blamed for social problems that are explained by multiple other factors. We already know you don’t actually want to help us – just protect people from us, but it sure would be nice if you could at least stop making life harder for us.


Note

Conversations on mass shootings do shift with context, and it’s important to note mental health isn’t the only topic of conversation. If the perpetrator was brown and Muslim, Islamophobia comes into play as a prejudice:

 

Via WA No Modern Asylum:

From my friends in Washington state:

…On November 28th of this year, the Guardianship Forms Subcommittee sent out an email asking for advice on creating specific forms for the Washington Supreme Court to approve or deny a guardian’s request to sterilize the person under their guardianship. Linked here is what the subcommittee believes the forms may look like [7].

…These forms try to make the process of asking the Washington Supreme Court to allow a legal, forced sterilization clearer to parents/guardians as well as speeding up that legal process so that people under guardianship will be forcibly sterilized more quickly than before. Creating these forms will result in more forced sterilizations in Washington state…

So what is to be done?

…The person in charge of receiving comments about the forms is Commissioner Rebekah Zinn (Washington State Pattern Forms Committee Chair). Her email, as listed on the call for advice, is zinnr@co.thurston.wa.us.

Please email her opposing this proposal and mention any personal connection you have on this issue. A sample format is linked here at our campaign page… Together, we can make them listen and stop this practice!”

via Don’t Make Eugenics “Great” Again: Oppose Forced Sterilization! — Washington No Modern Asylum

The Judgment about “What Counts” as Sexual Assault

This post goes into detail of an instance of non-rape sexual assault in the first paragraph. 

———-

In high school, one semester, a girl in gym class kept stroking my legs – well above my shins. She sat in the bleachers below me. I told her to stop, several times: it was uncomfortable and I hated and still hate being touched. She cooed at me and mocked my discomfort. I told the gym teacher, and he talked to her, but it didn’t stop. I resorted to lashing out with my legs in the general direction of her face. Finally, I started skipping gym class often that semester.  

I didn’t realize it was sexual assault with the probable intent to do worse until this year. So I never told anyone else at the time, though I don’t know if that would have helped anyway. I thought sexual assault only happened how it did on Law and Order: SVU, which I had caught episodes of in passing. No one ever told me otherwise. Adults in my life told me to carry pepper spray and not walk alone in the dark. They never told me to think about people I was at least vaguely acquaintances with. They never told me what to do if it happened. 

It seems that people, particularly autistic people like myself, rarely get taught about boundaries or consent: indeed, disabled people are often not even taught sex-ed or how to recognize abuse. To complicate matters, many autistic people have been through Applied Behavioral Analysis (ABA). Its methods violate children’s boundaries and bodily control, and leaves them vulnerable to more abuse in the future.

There is also a general perception around sexual assaults that say they’re not “bad enough” or don’t “count,” from all kinds of people. As if it is easy to judge what it is and isn’t sexual assault when you are not the person who was assaulted. It happens to people who have been raped, groped, touched, and/or assaulted in any way. For people who have been groped/touched, it’s that it wasn’t rape, and for people who have been raped, it often is still not seen as a rape. Very few assaults “count.” For disabled people in particular, some reasons include: “you should be grateful someone wanted to do it to you,” and in the case of some disability types, “the person didn’t understand or care it was happening, so it’s not a big deal.”

When people decide they can say what counts as “enough…” That’s not helping anyone be taken seriously when they report/tell people about sex crimes and assaults. Numerous groups of people already have trouble reporting or being believed about assaults. For instance, many disabled people receive direct support from service providers or family members. When these people assault them, it is harder to leave or report assaults. And it helps perpetrators get away assault and makes it more socially acceptable because it’s not “bad enough.”

People who have been assaulted are told it’s not “bad enough” and they should not have too many feelings, or that they don’t have enough feelings so it’s not “bad enough.” And of course, the perpetrators’ feelings are taken more heavily into account. As Rabbi Ruti Regan notes in this piece, “Victims are pressured to disregard their own feelings in order to help perpetrators feel better about themselves.”

If you are: Stop saying we should suck up our feelings because it’s not “bad enough” and it doesn’t “count” and “they have to live with it too”  and …

Stop saying it’s not “bad enough.”

———–

It is important to note that Me Too appears to have been started some time before now by a Black woman, Tarana Burke, when credit is going elsewhere.

Carrie Buck’s letters, and badly written narratives about them

Carrie Buck was the institutionalized plaintiff of the 1927 Supreme Court case Buck v. Bell. In a case rigged against her, the Supreme Court upheld a 1924 sterilization law. The Virginia institution sterilized her, then later “paroled” her: they sent her to do poorly-paid housework for local families. For any arbitrary reason, the Colony could re-confine her. She repeatedly pressed for a full discharge, and eventually won it. These facts are not in dispute.

Dr. Paul A. Lombardo, an academic scholar on Buck v. Bell, writes about these facts in a recent Undark Magazine article. He presents some letters written by Buck during her “parole” and post-discharge period as an untold story. It is a disingenuous claim to say he is presenting a new angle on an untold story.

Buck’s story has been told many, many times, by journalists, historians, a film in 1994, and an upcoming film starring Dakota Johnson. And her letters are not undiscovered, her thoughts not wholly unknown: The letters have been around for years, in the state library of Virginia, and excerpted in journal articles and books. Yet he writes in the article: “We also now know that Buck left her own record.” Buck’s story is albeit being told in flawed ways:  the narrative of her being “mentally normal” as the reason it was wrong to sterilize her. It is a narrative that journalists and scholars have done little to correct, including Lombardo. In fact, he uses these letters to promote that narrative in his article.

And it is true that they have not been publicized in Internet articles such as Lombardo’s (that I could find). But to say that Buck’s thoughts have never been known before, to say that we just now know “Buck left her own record,” is to say that we did not know before that Buck had agency.  To use Buck’s letters to promote a narrative that fails to acknowledge that eugenicists used disability, real or not, as a reason to sterilize people – is also wrong. To use Buck’s letters as proof of “not disabled” meaning she shouldn’t have been sterilized is wrong. (Also, disabled people are often denied agency in a number of ways.)

It is not only insulting to disabled people, but it is also insulting to Carrie Buck and what she went through. Carrie Buck was sterilized under a government law by people who used public fear of disability and “defectiveness” to do it. It was not for people to claim “not disabled” was the one quality that made her sterilization wrong. It was not for people to deny her agency.

Trauma in Fiction and Real Life: In Defense of “The Catcher in the Rye”

holden caulfield ask

[Anonymous Tumblr ask reading: “Holden Caulfield was a whiny self-centered teenager and he didn’t deserve an entire book”]

The above ask was sent to a Tumblr user, who responded with thoughts similar to my own. Holden Caulfield of J.D. Salinger’s The Catcher in the Rye is a traumatized teenager. Catcher is the story of what trauma can look like. It is the story of what it looks like when adults fail youth.

Holden was a vulnerable teenager experiencing so much trauma. He had so much grief of losing his brother, one of the only caring people in his life. He had to survive a toxic school environment where his peers killed themselves and he was implied to be enduring sexual abuse. He narrates his story from an institution in California following the breakdown.

Catcher is the story of what trauma can look like. The book wasn’t the story of “lol angst.” To dismiss that? Means letting adults and parents and educators off the hook to do good. To do right. To maybe support youth in working through trauma and edging closer to adulthood. Catcher is the story of a traumatized teenager. Some adults actively contributed to his trauma. And all of them let him fall through the cracks until the breaking point.

Stop letting traumatized teenagers just fall through the cracks. Stop assuming teenagers are just supposed to be miserable. Remember that just because trauma isn’t immediately visible doesn’t mean it is not serious. Treat pain, whether trauma-related or not, with respect – not as bothersome angst. Talking about counseling options can be helpful, but forcing them into it is not a solution. Training teachers to be better mentors and making sure guidance counselors remain in schools (and improving upon guidance counseling) are useful as well.

.  .  .

I read Catcher in high school, the same time I started dealing with fallout from trauma. I could see in Holden myself. I read and glimpsed what could have happened to me if things had been a little different. I read as the adults in his life failed him, as some in mine didn’t. I was a frightened and hurting teenager. Who didn’t know that it was trauma to even talk about. Who didn’t have any coping mechanisms. Who thus did not remotely know how to cope. Who did not know how to react, to process, to keep my pain at bay from myself and others. I had a support network of sorts. Holden Caulfield did not.

Is that how you want to view traumatized teenagers? Are you going to even recognize the possibility of trauma? Is that how you’re going to react to teenagers’ pain? Even if they aren’t strictly experiencing the effects of trauma? Is it? If you think he is just a whiny self-centered teenager and other iterations of that ilk, I know that this is what you would have thought of me in high school.

If this is how you view traumatized teenagers and teenagers in general – no, they’re probably not going to trust you. If your response to teenagers’ pain is “lol angst,” – especially if you work with teenagers – you are contributing to the problem. If you think Holden Caulfield’s pain is “lol angst,” you are contributing to the problem. The book is not just Holden’s story.

Catcher was once my story. Catcher is the story of so many people who are traumatized and trying to reach adulthood. Catcher is the story of what trauma can look like.

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).