6 Things People With Autism Would Like You To Know
More than one percent of all children born in the United States today have autism. Some people, whom we shall politely refer to as "squealing jackasses" (we have some far more impolite terms ready), blame vaccines for the rise in cases. The real cause of this supposed autism boom is the simple fact that it was first diagnosed in 1943, so we basically only just figured out autism is a thing. We sat down with several high-functioning autistic people and asked them what our readers should know about their condition. Here's what they said:
Pop Culture Always Gets Autism Wrong
You can say this for Hollywood: They're not at all scared to depict autism on screen. The problem is that they have one very narrow vision of what an autistic person looks like. It's nearly always a white dude who's employed in some sort of field where all his "hilarious" quirks allow him to shine.
Chris: "... which is a pipe dream for the many of us who can't get a job beyond janitor, even with college degrees. We need more portrayals that focus on the disability part of high-functioning autism, while still humanizing us."
In reality, 25 percent of autistic people are non-verbal and 54 percent of them have an IQ below 85. It's not easy to fit those stories on TV, though. And when high-functioning, "media-friendly" autistic people are depicted on television, they're about as far from "accurate" as Big Bang Theory is from "comedy."
Nina Mason: "QUICK: I say 'autistic person in television,' you think ... who? Probably Sheldon from Big Bang Theory or Sherlock from A Show Definitely Not Named for the Main Character. Neither is a good representation of autism, starting with the fact that both are very sarcastic men, and most people with autism cannot understand sarcasm."
"There's actually a sort of Voight-Kampff test for Asperger's syndrome ... in which you get read this story where Bob takes Sally to a restaurant that's supposed to be great, and the food and service turn out to be a disaster. At the end of the story, Sally says, 'Yeah, this sure was a great restaurant you took me to.' Most people recognize that she's being a smartass. People with Asperger's (and some forms of autism) will say that she's lying so she doesn't hurt Bob's feelings."
More nuanced, realistic portrayals of autistic individuals -- The Bride and Parenthood, to name two -- were praised by our sources. But there are no portrayals to be found of non-verbal individuals or their caretakers. Hollywood's fine with showing autism, but only the sexy kind where utterly charming geniuses simply aren't very tactful.
Our Largest Charity Wants To "Cure" Us
Autism Speaks is the largest autism advocacy organization in the world, which is kind of weird, considering that they have zero autistic people on their board of directors. They used to have one, but he quit because he was tired of the organization making autistic people out to be defective or diseased. It's not a super great sign when you can't pay an autistic person to lead your autism charity.
Obviously, our sources had profoundly negative opinions of the organization:
Nina Mason: "I honestly can't talk about it without devolving rapidly into a tiny rabid ball of incoherent fury."
Chris: "According to their own internal audit, the organization only uses four percent or so of its money to actually help people who have autism live better lives, and over 30 percent of it researching the causes of autism so they can 'cure' it. This includes researching what causes autism in the womb. Meaning they are researching eugenics so that we can stop existing."
Many autistic people are high-functioning, and the fact that they are autistic is just one factor that's contributed towards making them whoever they are today. If somebody wanted to start a campaign to "breed out" something integral to your personality -- your affinity for science fiction, your inexplicable love of penny farthings, your penchant for terrible puns -- you might find it a bit offensive as well. But then again, about half of autistic people are low-functioning, and a quarter are non-verbal. Autism has robbed them of any chance at a normal life. You can't look at a child who lives trapped inside of their own head and not want to do something about it. Not to mention the other, less talked about downsides:
Chris: "It's incredibly common for autistics to have problems with their GI tract. These health problems blow, and you can't say that it's a mixture of good and bad. The mental differences, yeah. You could say it's not all bad, and some of it's good. The physical health problems? We don't all have them, but the problems really suck."
Sometimes Self-Diagnosis Is Important
"Self-diagnosed autistic person" is Internet shorthand for "terrible person." And to be sure, anybody who exploits a disease to excuse their awful behavior is a big burlap sack full of flaccid dongs. But there are a whole bunch of people who had to self-diagnose, because there was a time when almost nobody knew what autism was.
Nina Mason: "... when I was a kid, I'd been diagnosed with ADHD and OCD for years, with a whole lot of disturbing symptoms that were covered by neither diagnosis, and so got lumped together into 'probable schizophrenia.' When I was 14, one of my teachers went, 'But wait -- I read this article, and this, this, and this are all covered by autism, as are these, these, and these, which none of your diagnoses cover. I think you should show this article to your mom.'
"My mom agreed, and spoke to my psychiatrist, who didn't want to change my diagnosis, because although autism was first described in the 1940s and these conversations took place in 2004, he had never heard of a woman with autism."
Women are still less likely to be diagnosed with autism today, and part of it is due to the fact that we expect young girls to be more social. So they get more experience interacting with other kids, which helps to "camouflage" their symptoms. Nina's psychiatrist eventually did some research and changed her diagnosis. She was one of the lucky ones. It's incredibly common for people with autism to be misdiagnosed as bipolar. Unless we're talking medical marijuana, it is generally a bad idea to take medicine for conditions you don't have. For example:
"... look up 'lithium toxicity' and 'barbiturate poisoning' if you want some nightmares tonight, or consider that for twelve years I had to have blood work every three to six months to be sure my medication was not literally eating my liver."
People With Autism Are Not "Cold" -- We Actually Feel Too Much Emotion
If you've bought into the stereotype of autism as the "Spock disease" -- that it turns people into emotionless logic machines -- you might be surprised to learn that people with Asperger's Syndrome and other forms of autism tend to feel emotions too strongly. You might also be surprised to learn that this makes them more like Spock -- according to the Star Trek expanded universe, the Vulcans are a very emotional people, and they feel the need to regu- you're trying to wedgie us through the computer, aren't you? Fine. We digress. The point is that people with autism do feel -- they just have more difficulty regulating their powerful emotions, and tend to drop into robot mode as a way to protect themselves.
Nina Mason: "Recent research actually suggests that people with autism feel emotion more heavily than allistic people do, and 'shut down' in self-defense.
"It's sort of the reverse of saying, 'Aww look, he's smiling, he must be so happy!' about your dog, who is in fact just trolling for treats. When someone compliments me in a way that makes me really happy -- like telling me my art is great or that I look really good in a new dress -- I might manage to squeak out a 'thank you,' but it's way more likely I'm going to hug myself and cover my face. It's not that you've annoyed me or that I think you give shitty compliments; it's that I literally don't know what else to do (autistic tic: hugging oneself) and get embarrassed (reaction: covering my face)."
So uh ... all those anime schoolgirls might be autistic?
We See a Different World and Speak a Different Language
Have you ever tried to explain a software problem to someone? On the other side of the world? Who doesn't speak the same language? That's kind of what it's like for an autistic person to interact with mainstream society: They simply don't interpret visual and verbal cues the same way as most people.
Chris: "We think so differently that we sometimes say things that make no sense to others, but make perfect sense to us. Once in elementary school, we had a police officer give us Halloween safety tips (this was during the 'razor blades hidden in apples' scare). I raised my hand and asked, 'What if the house we are trick-or-treating at has a trap door? How do we handle that situation?' The cop told us that this was very unlikely to happen, which didn't answer my question. Later, my teacher told me that my question was inappropriate. I had no idea what the hell she was talking about."
You see the problem: If we don't teach our children how to handle Scooby-Doo-style trap doors, we are literally letting our children down.
So how do you effectively communicate with someone with autism? Be blunt. Don't rely on nuance or social cues -- tell them exactly what you want.
Carson: "My parents were blunt. They'd just say, 'Carson, you've got to end the story now.' It seems aspie kids operate on a sense of directness and logic. If you explain the logic of something rather than get them to try and pick it up themselves, it's better in the long run for them."
And sometimes pushing an autistic person (not literally, jerk) into a situation they're unfamiliar with can be exactly the lesson they need:
Carson: "I first got a job at 16. I work currently at the ballpark as a summer job -- selling popcorn and snacks, and after a while, selling beer. When I started, I had difficulty convincing myself to yell. I wasn't very good at that because I didn't like the idea of that much attention. But I realized I was not the only one yelling, and then it was fine."
We shouldn't have to explain that being blunt does not mean, "Be an uncontrollable dickhead to any autistic person you meet from now on. They love it!" We shouldn't have to, but knowing the Internet, we probably do.
For People With Autism, Work Is a Huge Hurdle
One in three young autistic adults has zero paid work experience, even seven years after high school graduation. This is significantly higher than the rate for people with mental disabilities. We're not going to claim there's only one cause for so large a problem, but being seen as even a little weird can torpedo your chances in the working world.
Nina Mason: "I can't prove I was fired from my last job for being autistic. What I can do is say that it's awfully funny that I was 'doing a great job, just relax a little -- you don't need to push yourself to learn everything so fast' until four days after I disclosed to my boss, and then suddenly I was 'making customers uncomfortable' and 'not learning company standards.' I've had people tell me I made them uncomfortable because the Aurora shooter had autism. To my face."
As Chris pointed out, deciding whether or not to disclose your autism to an employer is a major choice:
"If we admit to being autistic upfront, that means a reason not to hire us. If we don't and we get the job somehow, we risk being fired because of the whole 'there's something a little odd about that person; I don't like them' crap."
And while "coming out" to your employer can have some serious negative repercussions (as Nina experienced), it might also really help:
Chris: "At work, I had a coworker who would always avoid me. She had a look in her eyes that indicated that she found me creepy somehow, as I did nothing more than walk down the hall. It's hard for me to look natural -- natural for me is either staring straight ahead, staring at the person, or avoiding their gaze. She seemed to find me creepy ... until one day she randomly warmed up, and was nice after that. I imagine she must have told her boss (who knows I'm autistic) that I was creeping her out, and got set straight."
For more insider perspectives, check out 5 Ridiculous Myths You Probably Believe About Schizophrenia and 6 Surprising Ways Life Looks Different With Terminal Disease.
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