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CLLynch @lynchauthor
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Dear world. It’s time to correct some assumptions about #autism. I am #actuallyautistic and fortunate enough to be professionally diagnosed. I would appreciate your taking the time to read this thread so you can learn about autism from a person with autism.
One of the biggest assumptions people make is that autism involves intellectual disability. This is incorrect. Autism often shows up in combination with a variety of other disorders and ID is one of them but the vast majority of people with autism do not have ID.
The official statistic most often quoted is between 31% (according to Autism Speaks) and 38% (according to the CDC) of autistic children have a diagnosis of intellectual disability. Note that this is a SEPARATE diagnosis. It is not inherent to autism.
And that statistic is probably over inflated, since it is hard to measure intelligence in autistic people, given that tests inherently involve communication. In fact studies show that high IQ autistic people can perform POORER on certain tests.…
Which brings me to me next important PSA: Autism comes with challenges in holding conversation and developing social skills. It does NOT impair the ability to make mouth sounds or to type words on a device.
Many people are under the impression that people with “severe autism” cannot talk. This is incorrect. The inability to make mouth sounds is called apraxia. It occurs relatively commonly in autistic people but it is a differenr diagnosis.
Read this description of apraxia and ask yourself if it sounds like your conception of autism. If so, you have been mislead.…
That is because the two often do show up together. But not always or even close to always. It doesn’t help that delayed speech is one of the most well known signs of autism so children with apraxia are much more likely to be diagnosed.
That means that if a child talks on time or is even a chatterbox, people don’t think about autism. That means this conflation if apraxia and autism can be quite harmful because autistic children without apraxia may go without diagnosis.
It is frustrating that the public image of an autistic person is an intellectually delayed child with apraxia, since neither of those are required or even involved in an autism diagnosis.
So, what do you think IS involved in an autism diagnosis? I bet you think you know one - lack of eye contact! Everyone knows that is a classic sign of autism right?
Well you are right, it is a classic sign of autism and it is definitely something to watch out for. Many of us are uncomfortable with eye contact or (like me) just don’t do it naturally and have to think about it. BUT...
You can have ZERO problems with eye contact and still have autism! Problems with eye contact are mentioned in the DSM diagnostic criteria as an example only. Not as a specific requirement.
Instead, what IS required for an ASD diagnosis is problems with body language/non verbal communication. Maybe you don’t show facial expressions normally. Maybe you just can’t “read the room”.
What else is genuinely involved in an autism diagnosis? Well, challenges with social interactions or back-and-forth exchange. This can range from not wanting to hold a conversation to simply interrupting/holding monologues.
In addition, difficulty understanding relationships and managing them appropriately. Maybe you have difficulty with complex and unspoken social rules or find it hard to maintain friendships.
You also need two (ONLY TWO) or more of the following: 1. repetitive behaviours that you do overalls over. The classic is flapping but it can be anything repetitive. 2. Rigidity/need for sameness/dislike of change. 3. Narrow and intense interests 4. Sensory differences.
Think of those as possible side dishes for a restaurant meal. You can have two people with a totally different set of “sides” but they both have autism.
“Over and over” not overalls over. Damn you autocorrect.
Finally, in order to be diagnosed with autism the diagnostician must be satisfied that all of the above are NOT because of intellectual disability and that they are severe enough to cause problems with relationships, work etc.
Notice that the diagnostic languages uses words like “deficits” or “difficulty” not “inability” or “incapacity”. That means you might still be able to do them, it’s just harder for you/doesn’t come naturally.
This means that adults with autism are often dismissed because over the last twenty or thirty years we have learned how to read body language, look people in the eyes, and make small talk. So obviously we “aren’t autistic”.
That’s like telling a Deaf person who has learned to read lips that they aren’t deaf because they can understand you when you speak to them. It negates the hard work the other person has put in just to communicate with you YOUR way.
We are still autistic. You can clicker train us to act like you. You can teach us your complex social rules and require us to pick up on nuance and scold us when we fail. But when we succeed through perseverance and hard work, that doesn’t mean it wasn’t and isn’t hard work.
Imagine how frustrating that is. To be told that you can’t be autistic because you don’t act like an autistic six year old the person knows. Never mind that maybe that six year old will act like you when they are your age, or may have other diagnoses you don’t have.
Being autistic often feels like being someone from another country who is ordered to fit in, or someone who speaks one language being scolded for not speaking another well enough.
Many of us develop a resentment from being told that being ourselves isn’t good enough. That if we don’t act like you, we are a burden or a nuisance but if we do act like you then our hard work is negated because we must not be autistic.
Parents often discuss autism with the same dread as they might say “cancer”. Children all over are getting whooping cough and measles because their parents were terrified that they might end up like us.
And everyone we speak to thinks that the main symptoms of autism are things that aren’t even part of an autism diagnosis. They don’t want their kids to be autistic but they don’t even know what autism IS. Why is that? You can thank Autism Speaks.
Let’s start with their name. Everyone thinks Autism Speaks exists to speak for autistic people. That’s what the name implies. That means they think autistic people can’t speak for themselves. The leap of logic is understandable even to me.
In fact, Autism Speaks does not aid autistic people in their advocacy. It does not help us “speak”. In fact, it consistently and repeatedly asks non-autistic to speak about how our autism affects THEM.
When Autism Speaks began less than fifteen years ago, they were an autism-demonization organization. It was Autism Speaks who popularized and inflamed the “vaccines cause autism” myth.
They got Alfonzo Cuaron to make a truly awful video full of false statistics which made Autism sound like a plague.
They shared horror stories from parents about how awful their autistic children are. They often spread the worst cases with kids who had a lot of additional diagnoses while blaming ALL of the kids’ problems on autism.
They promoted schools that trained autistic children like dogs to “act like their peers”. Some of these schools used electric shocks, something even most dog trainers refuse to use.
The perception of autism went from a flapping kid obsessed with trains to a full blown nightmare. Now people believe that autistic people cannot communicate or even be intelligent.
...But even if that were true - even if all of us had intellectual disability and could not use mouth words - wouldn’t we still deserve a say in matters that affect us?
Autism Speaks has come a long way since their early days. After throwing away millions trying to find a link to vaccines they gave up and admitted that no link exists. They removed “funding a cure” from their mission statement as science proved that it is not a disease.
They are now focusing on genetic, rather than environmental cause. All of thee steps are steps in the right direction. But most autistic adults loathe the organization still. Why?
First of all, they have never apologized or tried to make amends for the harm they did. Many autistic adults were harmed as children by Autism Speaks’ damaging beliefs and propaganda.
Second of all, they have made little to no effort to help autistic people speak for themselves. Their narrative of “we speak for autism” is as strong as ever. Instead, they continue to advocate for the FAMILIES of autistic people, continuing to spread the narrative of suffering.
Autistic people made the hashtag #actuallyautistic to try and separate their voices from the clamour of non-autistic people shouting about autism.
We tried to explain why we act the way we do, answer the questions people have about why autistic people do such-and-such a thing such-and-such a way. No one listened. You know why?
Because we were talking. And everyone knows autistic people cannot communicate. So therefore we weren’t really autistic. And people with family members who were “real people with autism” were so used to advocating for their children that they thought they had the right to...
...advocate for all autistic people. And because we, as adults, can communicate better than their children, we must not understand what it is like to be an autistic child.
And they, as non-autistic family members, must understand our needs better than we do. Because we aren’t “severe” autistics. Because everyone knows a “severe” autistic can’t type WORDS.
Except for the fact that they, you know, CAN. Check out Carly Fleischman who has a truly adorable interview style and charms the hell out of Channing Tatum.
And Carly Fleishcman’s Autism is not more severe than my own. It may look like it is, but she has some challenging comorbids that I do not have, like Apraxia and ADHD and OCD. But she is just as witty, and a hell of a lot better at flirting than I am.
Autism Speaks recently invited a video game vlogger to be an “ambassador” for Autism Speaks and it caused a big backlash in the autism community. Not because we have any problem with the actual vlogger, but because it hurt our feelings all over again. Why him? Why not one of us?
Autistic people began tweeting the vlogger, asking him to reconsider, asking him to learn more about the history of Autism Speaks and their consistent tendency to talk over us and ignore what we say.
How they insist on promoting the idea that autism is something you HAVE, like it’s a DISEASE, instead of something you ARE, like being intelligent or artistic or dark-skinned or blue-eyed.
Like how they ignore all the autistic vloggers out there like @NeuroRebel or @neurowonderful because it them, autistic people aren’t capable of doing their own advocacy.
Like how they are not run by #actuallyautistic people and do not seem to make an effort to hire autistic people over neurotypical people.
Like how they still think we can’t speak, when it’s really because no one seems to want to listen. We are here. We are speaking. Can you hear us?
If you can hear us please RT the top of this thread with “I hear you”. If you would kkke to hear more autistic people you can ask us questions at #askingautistics or learn about autistic culture at #AutisticCultureIs
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