Autistic people are…

Last week, we blogged about “Autistic people should…” as a response to Google’s autocomplete suggestions for “autistic people should” and “autistic people can”.  This was a flash blogging event, and there are more entries chronicled here. 

Since then, a number of things have happened.  People took notice. This is a good thing! Google is going to change their search terms. Even large organizations like Autism Speaks noticed! That’s a good thing, right? Oh wait.  Autism Speaks mentioned Google.  They didn’t mention anything about the Autistic people who made this happen.  Comments on their page by Autistic people have gone completely unanswered.  This, on the day when we as Autistics are taking time to mourn our dead, unjustly killed by their caretakers.  Deaths that were caused by the terrible ideals that Autism Speaks perpetuates.  I am demanding an apology from Autism Speaks.

So today, I am going to tell you a little bit about this community of mine.

Autistic people are authors of our own stories.  Too many times, I find an article about an autistic person that makes me think that their voice is going to be adequately represented, that they’re going to be able to tell their own story.  And while that is sometimes true, most of the time it is not.  I’ve gone into the #autism tag on Tumblr on more than one occasion, seeking to connect with my fellow autistic people, and finding nothing more than parents and siblings and educators and so-called “experts” talking about someone they know who “has autism”.

But Autistic people are speaking! Loudly! In many different forums.  I find that I can connect with a great deal of very diverse Autistic individuals online, because it’s certainly easier for most of us to communicate in text-based ways than verbally or in person.  Autistic people are capable of telling our own stories.  While, yes, we may appreciate being backed up by our family members, we don’t need them trampling all over us in order to tell our story for us, as though we cannot do it on our own.

Autistic people are competent.  There’s a saying that goes for all of the disability community, but is especially relevant to autism, as there are many among us who are nonspeaking.  That phrase is “presume competence”.  Assume that regardless of a person’s level of communication, you must presume that they are able to understand you, I’m constantly reminded whenever we talk about presuming competence of Carly Fleischmann, and how her parents were told that she was incapable of understanding.  They were told incorrect information regarding their daughter’s diagnosis, and as such, they assumed that she didn’t have the ability to understand.  That is, until she turned 11, was given access to a computer keyboard and she began typing her thoughts. This is the case with many nonspeaking individuals.  I recall one of the last documentaries I watched (that wasn’t autistic-led, which is hard to find in the first place) was Loving Lampposts.  In it, one of the nonspeaking Autistics said that people presume that he doesn’t have much to say, that there’s little of worth that he will communicate.  This is the problem with in-person communication between neurotypical folks (who are sometimes considered “experts” but really know very little) and autistic folks.  The NT folks see someone who cannot speak, who stims quite a bit, and they think “weird”, “not having anything to contribute”.  However, if these NT folks came upon some of the nonspeaking Autistics I know online, they would claim that there was no way that they could be “low-functioning,” because in many NT folks’ mind, “low-functioning” equals “non-thinking” or “incapable”.  Autistic people are competent.

Autistic people are more than a functioning label.  This is related to point #2, of course.  It’s a little bit ridiculous, but many allistic and NT folks (allistic simply means “not autistic”, whereas NT means “completely neurotypical with no neurodivergences) tend to like to put these labels on those of us who are Autistic.  “High functioning”, “low functioning” — all of these undefined terms that really don’t mean anything.  Laura Tisoncik described the dichotomy best when she said “The difference between high-functioning and low-functioning is that high-functioning means your deficits are ignored, and low- functioning means your assets are ignored.” In other words, it’s a no-win situation.  I’ve had the functioning label thrown at me over and over again.  I’m “too high functioning” to deserve a voice in the debate over a cure, so some say.  But then again, “low functioning” folks don’t get a voice either, because they aren’t able to have coherent thoughts, and opinions and make decisions about their own lives.  I am a person.  Autistic people are people, first and foremost.  We are not functions.  I addressed some of this (and a few other points) in this post.

Autistic people are brilliant. This doesn’t mean “high IQ”.  That’s not what I mean when I say brilliant.  Perhaps it’s somewhat of a throwaway word, overused like “awesome” and “amazing”.  But Autistic people are brilliant.  We are a people who are often treated as though we are not quite human, we are erased, we are dehumanized, we are told we have no empathy, we are monsters, we are not worthy of love or affection, and that in the end, our abusers will be the ones to receive sympathy if we are abused or murdered.  We are told that we are not trustworthy because of our awkward body language and lack of eye contact.  But you know what? We are resilient.  We are survivors, and we fight every single day of our lives to do away with the stigma against people like us.  Not every one of us can be “out” as autistic, because currently, that’s not safe to do.  Despite the fact that autism is a disability covered under the ADA, many of us have been discriminated against with regards to schooling and work, and perhaps it is necessary to hide, to “act neurotypical”.  Autistic people are a community.  We are a community of very different people who share a common experience with the world — an overwhelming yet beautiful place to live.

Autistic people are brilliant. 

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4 thoughts on “Autistic people are…

  1. I just read your post, and I must admit that it got me deep down in the heart. I have Asperger, and I’m pretty good at school and language, thus everytime I got stuck, everybody tell me it’s because I’m not making enough efforts. So if I can’t do algebra, it’s because I’m not trying enough. If I can’t get a job, it’s because I’m not trying enough, etc. Never bring the autism in the «reason for being weird» or «for being unable to go to a new place, on a new schedule, without maps or anything». No, because I’m Asperger, and not an mute autistic (sorry about this expression, not mine, but I’m not sure how to say this in english) I must have nothing beside the «good» sides of autism, and no «impairment». So I can fulfill a year of homework in a week, but I can’t have social phobia, if I take account of what my parents and teachers say.
    Because of that, I felt like if you were speaking to me when writing the part about «high-functionning» and «low-functionning». We’re people before being the tags put on us.
    As I personally don’t hide my autism anymore, and is perfectly fine with it, I understand that most autistic don’t have my luck.

    Just wanted to comment on this post,sorry if it’s off topic or full of mistake, english isn’t my first language.

    Like

  2. I just found your blog tonight (searching for something totally unrelated on Google), and I’ve only read 4 posts so far, but this one strikes me really hard. I’m… allistic, but not neurotypical, if I understand the meanings of these terms correctly. ((I have panic disorder; the specifics vary, but in my case, I was born with it and feel fear as a constant, rather than as an intermittent and rational emotion.))

    …I thought I understood what autism is, because growing up, I had the rare opportunity to interact with an autistic kid regularly. There was some kind of special school near us, and one boy’s family moved there so he could attend. They also attended the same church as I did, and I was the only teenage volunteer working with his age group. I was really the only person in charge of minding these kids; an adult was present, but she spent most of the time interacting with parents, preparing snacks, preparing a story/lesson, and hanging back because rowdy 4- and 5-year-olds made her uncomfortable. I was also the only person having regular interaction with this boy, because the other children understood with the first explanation that he wasn’t sick or mean, he just needed more alone time than them. He was uncommunicative, and I think I heard him say two words (one was definitely a word, the other might not have been) during the years he was there. One of his teachers came with him the first few times and explained how to comfort/calm him if he got upset, what behavior was normal and what wasn’t, what interactions felt threatening to him (like forced eye contact), and that he needed as much consistency as possible. Sometimes we had a substitute adult in the room, and she had a habit of trying to force him to play with the other children, force him to sit with the others during lesson time, and god help us all… one time, she took his snack (that his parents brought from home), threw it away, and tried to force him to eat the same one given to the other kids, which was never the same thing twice. It was like she hadn’t even listened to the briefing. The second time she tried this, I caught her before she threw his snack away and put a stop to it, because that poor kid sure couldn’t stop the old woman himself. He was only 5. Two years after he left the preschool room and I hadn’t seen him in a while, there was a commotion at a small festival the church put on. The boy had gone in the Bouncy Castle but got too nervous while he was in there and huddled in a back corner, unable to get out. His parents had gone off somewhere, and none of the other people around recognized him (because he wasn’t very social, of course) or had a clue that he was autistic. So I crawled in there, stroked his arm and back the way I’d been taught, talked to him by name in a friendly voice, and we left the Bouncy Castle together. And found his daft parents, because seriously, who leaves their child completely unattended like that, regardless of their neurology?! I rather suspected that it wasn’t just how I was behaving, but that he recognized me, that helped this boy calm down and get back out of the Castle. To me, it was like interacting with a child half his age… and for a very long time, I’ve thought of autistic people in general as being “normal aged” in most things but “child-like” in understanding society. That some part of the brain is permanently underdeveloped.

    …I have NO IDEA how autism actually works. All I know is my experience with one very young boy, that autism was once believed to affect only males, and that autism is one of the neurodivergencies we now believe to be “different, not inherently better or worse” than neurotypicality.

    …But the thing is, every now and then I run across some post on the internet– usually well-written, sometimes written in horrifically difficult-to-understand chatspeak– from someone stating that they are autistic and what that means for them. Then, last week, I found out there’s a prominent politician in Europe who just so happens to have Down Syndrome. These things challenge my beliefs and assumptions, without really providing a resolution to my uncomfortable realization that I’m a neuroatypical (AND physically disabled) ablist. Obviously, my answer to “what is autism?” (not to mention “what is Down Syndrome”) has been wrong, but this is a multiple-choice question, so eliminating one wrong answer doesn’t tell me the correct one!! This issue is uncomfortable and frustrating for me. I don’t want to be WRONG. I don’t want to shove people in box that doesn’t fit or doom them before they’re given a chance, but I’ve been the kind of person who said, “I would abort or give up for adoption a baby with Down Syndrome or physical defects; I can’t love a baby like that,” and now I’m wondering how much of a monster that makes me. All these things I’ve been taught are “developmental defects,” as if human beings are equivalent to software and equipment.. If I know a blind person, a deaf person, a mute person, and an amputee are all perfectly capable of thinking maturely and living natural lives, why has it been so easy to think that someone with an odd face, short limbs, or a tendency to stim and avoid eye contact is… well… I’ve been thinking of all these people as having intelligence barely above a vegetable, until and unless individually proven otherwise. And that perspective is so, so messed up. Like I said: Obviously the wrong answer.

    …Thank you for giving me the RIGHT answer. The right answer is your post. The right answer is that all these “defects” are little different from my “disorder”… challenging but livable, almost impossible to get an outsider to understand, and absolutely nothing to do with being adult (much less human). And like braille, sign language, and handheld chalkboards have been bridges across other communication barriers, so the internet is becoming for many of these.

    …God, I hope more people speak out. I hope more people speak out online, open about the barriers they face IRL, so everyone can read blogs like these and find out what’s really going on. We’ve spent so many years being wrong. I know it’s just misunderstanding, but the results are such monstrous thinking (like mine about babies) and behaviors (like sterilization, severe abuse, and murder), I feel like we’ve been LIED to. I’m not sure if it’s more horrifying that we’ve been wrong, or that we’ve perpetuated such tragedies no matter WHAT we thought of our victims. God, I am so sorry for everything I’ve ever thought or said. Please keep blogging. Please don’t stop. I don’t know how long I’d have gone on without knowing what I’m supposed to think, if I didn’t randomly come across your blog, and dead blogs don’t pop up so high in random search results.

    Thank you so much for writing.

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