Terror of being diagnosed with something I couldn’t understand. (Long, has a tl;dr at the end.)
Psychotic was a word I could understand. I wanted words I could understand. I didn’t care if the words were true or not. I only cared that the words sounded powerful, complete, an explanation of everything wrong with me. Call me manic, I’ll be manic. Call me multiple, I’ll be multiple. Call me psychotic, I’ll be psychotic.
But there were other words being used, far more often. Developmentally disabled. Idiot savant. Autistic. Severely complex developmental disability. Pervasive developmental disorder. Atypical autism. Central nervous system disorder NOS with severe sensory and motor issues going back to early childhood.
Those words scared me. They scared me because they did not map to anything in my brain. Psychotic was a word I could understand. Autistic was a word I could not understand. My greatest fear was that whatever was wrong with me could not be understood, could not be named, had no label that I would ever be able to comprehend. So when I heard all these labels that I couldn’t comprehend, it was like my worst fears coming true.
So I tried really hard to be the things I could understand. I thought maybe if I tried hard enough for long enough it would become second nature and become a reality. Someone had said “People become what they pretend to be,” and I thought maybe if I just pretended enough, I’d become something I could understand.
It didn’t happen. If anything, it just made my autism more obvious. I remember walking into appointments with regular medical doctors — like a proctologist, once — and having them ask my parents if I was autistic. They hadn’t seen my records. They just assumed I was autistic based on my appearance and behavior.
the realization just kinda hit me that a lot of my old habits that i thought were OCD were just stims? i really wish doctors had like. told me more about autism tbh
Yeah I had a doctor tell me that if I felt like the world would end if I couldn’t stop doing something then it had to be OCD. And it turned out to be some combination of stimming and akathisia.
There is no doubt that lot of people seem to have a hard time accepting that someone they know has a disability. This is easily proven by the endless amount of hasty, ignorant, misinformed, uncaring and downright malicious things both said and done to people with disabilites every day. Most of the people I spend my time with nowadays for the most part aren’t like that. However, many of them, even though they seem superficially informed about basic disability issues, seem to belive in thedifference slot.
The basic idea is that each and every person has their difference, and that it should be respected. Note the singular form, however. When they learn of my autism, which is usually the first major difference to come up in conversation, they seem to think “oh, so that’s her difference”. They then proceed to fill in my difference slot in their mental table, and everything is as it should be.
Or, so they think.
Then, a little while later, I happen to mention some other thing that makes me very different from most other people, and their belief system collides head-on with reality. Usually, it’s another one of my disabilities that triggers it. This is when they almost invariably go ”…” for a while, only to finish with “you have that too?” In other words, “your difference slot is already filled, and you can’t have another one”.
(Click on the above link to read elmindreda’s full article on The Difference Slot.)
A lot has been written about autism and spectra, but there’s one spectrum that is seldom described in clear terms; that of the supposed quality of one’s diagnosis, whichever one happens to have. Thus I have attempted to list the basic categories.
To counteract assumptions about the relative quality of the different kinds, they’re listed in alphabetical order.
This text is mostly anthropological in nature. Criticism of the current state of psychiatric diagnostics with respect to autism will be discussed elsewhere.
(Click the above link to read elmindreda’s entire article on classifying diagnoses themselves along a spectrum. She covers the full ‘spectrum’ of types of diagnoses from self-diagnosis to diagnosis by famous diagnostician.)
Much has been written about the autistic person’s lack of multitasking ability. I was rather surprised by these claims and will attempt to explain why by giving a personal, inside perspective on it.
Some of the issues I will list below aren’t included in the diagnostic criteria for any form of autism, even implicitly, but rather connected to labels like synaesthesia or auditory processing disorder, but sensory issues of one kind or another seem to me to be sufficiently common among autistic people that I believe it is something worth looking into.
My hypothesis, based on my own experience as well as that of my friends, that it may not always be an inability to multitaskper se, even though it may seem that way to an outside observer, but may instead be an inability to fully emulate neurotypical behaviour when lacking the necessary, high-level automation.
(Click on the above link to read elmindreda’s full article on autism and multitasking.)
Most people have a lot of strange notions of what autism is as well as what it isn’t. This includes a lot of people who really should know better, such as autistic people, parents of autistic people, and medical and mental health professionals.
Here are some things that are still widely and falsely believed to be inherent to autism.
(Click the above link to read elmindreda’s entire article on autism myths.)
It’s very common to divide autistic people into a ‘speaking’ and a ‘non-speaking’ group, and also to assume that the ability to speak implies the ability to communicate with speech. Those people who do so quite naturally place me into the ‘speaking’ group, since I’m most of the time able to produce understandable words, almost always strung together into sentences.
However, there’s a large grey area between being fully able to use speech to communicate and not having access to language at all, and it’s not linear either. There are many ways of communicating that doesn’t involve speech, and many examples of speech that isn’t functional communication. I frequently experience a lot of things that I call a difficulty or inability to communicate, that all feel very clearly different from one another, but that people who use the above categories tend to classify as either ‘speaking’ or ‘non-speaking’.
This is a deplorably simplistic view of what actually goes on, and one that can cause very unpleasant situations. Since I haven’t seen a lot of descriptions of what it’s actually like to lose speech, or to be able to speak but not be able to use that ability to communicate (and those I’ve seen always seem to be missing things), I will attempt to describe some of the different ways I experience those things. Just keep in mind that there are a lot of other possible ways, too.
(Click the link on the top to read elmindreda’s entire article on speech.)
No sorry you can’t be gay you’ve already used up your Minority Power slots. if you want to be gay you’ll have to replace one. Maybe get rid of being black or disabled?
Didn’t youneedacat come up with the “different slot” analogy?
Oh wow, no, no I didn’t. I sometimes get too much credit for other people’s work. :-(
And I feel horrible right now because I can’t remember the name of the woman who did. I really, really liked her, too, so not remembering her name is embarrassing. She was an Autism Hub blogger, and she was from Sweden, if that helps any.
Oh yes, her Internet handle was elmindreda. As in, like in the Wheel of Time novels, but with a lowercase e. She’s from way back, as I am, from when lots of people had Internet handles where it mattered whether the first letter was capitalized or not. So always call her elmindreda, even if the word starts a sentence, never Elmindreda. Shows your respect of her as an old-school geek, and your respect for what her name is and is not. Elmindreda with a capital E looks wrong to me now, even though I once made that mistake myself. Only once, though. elmindreda is what it’s been ever since, in my mind, once I realized.
Here is her post on the difference slot:
Being a self-taught ‘outsider artist’ and whether those words piss me off or not varies moment to moment.
I wrote this and forgot about it, but I’m posting it now. It’s super long so there’s a tl;dr at the end and I’m putting most of it under a cut.
So lichgem reblogged this post about the way people’s art is handled after they die. Especially crazy people’s art. The way that one guy, for instance, he was crazy and he loved cats and he painted lots of cats. And psychology textbooks and other books have rearranged his paintings so the most normal looking cats come first and the most psychedelic-looking cats come last, even though that is not the chronological order they were painted in. Then they try to show this as his “descent into madness” and so forth. His name was Louis Wain, try to remember him for who he was, not who he was not.
I didn’t want to hijack a thread with such a wonderful poem so I am posting my response here. The poem is Heartless. Rather that’s its title, so you can click on it. It has more heart to it than many poems I’ve read.
No Missing Pieces #1 may be missing some people.
(This is probably going to be the foreword in No Missing Pieces #1.)
I’ve been working for a year on the first issue of a collaborative zine (short for “magazine”) by autistic people called No Missing Pieces, which will be online and on paper very soon. When I started on this project, I tried to cast a wide net for contributors because my hope was that lots of different autistic people would send stuff in, particularly autistic folks who are even more kept at the margins of societies and probably often overlooked within Autistic communities as well. In a lot of ways, that’s happened: girls & women, people of color, non-binary folks, binary & non-binary trans folks, queer people, people with additional disabilities, and folks of various ages from different parts of the world have submitted work. Everyone who sent something in has at least one thing in the zine because I didn’t have to turn anything away due to contents, and I didn’t edit the contents.
Something I’ve been thinking about a lot with this first issue though is that I don’t currently know if any non-speaking people are contributors, or if people who need a lot of help with daily life things have contributed, because I didn’t ask since it’s none of my business. I’m sure there are many other autistic experiences and identities that are lacking in or absent from the zine as well — and I know one magazine is not going to represent everyone — but those are two that I am particularly thinking about because I think they probably make up large portions of the Autistic community. Also, autistic people who can usually speak with their mouthparts in ways that non-autistic people can typically understand and who may generally get read as non-autistic by non-autistic people sometimes take up a lot of space in the Autistic community, and I was thinking about that while working on this project.
I accepted submissions that were sent in to me by (or not long after) the deadline(s) (the last one was in July), but something I didn’t do enough of is reach out directly to people whose work I’d seen and liked to ask if I could feature their work because my anxiety kept getting in my way — especially if they’re pretty well-known in the Autistic community, but also just random strangers. Another thing is I think maybe I didn’t stress enough in the call for submissions how important it is to me to showcase people who are marginalized within the Autistic community as much as outside of it. I’m still pretty new to the Autistic community, and this is my first time doing this sort of collaborative community project, so I got overwhelmed and may have “dropped the ball”. I’m really sad that I can’t find the URL for a video I saw a year or so ago that taught me a lot about disability history / the disability rights movement, the history of the neurodiversity movement, and the history of Autistic communities in some parts of the world, which was edited, directed, subtitled & voiced-over by a young non-speaking autistic guy and was super well-done because that would have been awesome to include. There’s a lot of other stuff that I would have liked to include as well though.
Like I said, I really have no idea whether or not non-speaking autistic people or autistic folks who need a lot of help with daily things or other auties who seem to be marginalized within the community have contributed, but I’m writing this to say I hope that they have — or that they will in future issues, assuming this first issue goes well. I just wanted to talk about this because I know how important representation is. I am learning as I go, and I will work to do better next time. All autistic people (among many others - but this is a project by autistic people) are important, whole human beings (hence why people chose the title “No Missing Pieces” - thanks to @jupiter-reborn for the title!!!) who should be valued, supported, accepted and listened to just as we are, and that’s why I started this project.
Thank you for reading.
— Jordan, editor of No Missing Pieces
I am nonverbal (though I haven’t always been) and need a lot of help getting through the day. I wanted to contribute but completely forgot about it because a family crisis intervened and has completely knocked my life off the rails. Is there any way I can contribute still?
A thing I find inexplicably annoying
There’s this guy who often gets off the train at the stop where I sometimes disembark to get groceries.
I know he’s just getting off there because he lives nearby or something and I have no sense whatsoever that he is following me or that his actions have anything to do with me, period. I have no doubt that he is just getting of there for the same reason I am: it’s convenient!
Moreover, I have never talked to him and he has never talked to me. For all I know he is a perfectly lovely person and I have no ill will toward him.
In other words, it’s not about HIM at all. It’s more that there’s something weirdly awkward about walking around in the grocery store and repeatedly coming face to face with this guy who just got off the same train as me, and who seems to get to the checkout line at about the same time as me, 9 times out of 10. Like…we don’t know each other but we see each other all the time at the same time doing the same stuff and there’s some aspect of that that makes me feel something like embarrassment. Or like there’s some social rule I’m supposed to be applying but can’t quite identify.
Does anyone have a clue WTF this is? I suspect it might be related to what Donna Williams calls “exposure anxiety”, because while there’s a social component it’s not typical social anxiety and it’s a thing that makes me squirmy on a deep sensory level.
Just signal boosting in case anyone knows?