Why The World Needs More People With ASD
In my lived experience, going non-verbal is not something I’m particularly afraid of. I recognize that it’s a fact of who I am and it’s just something I’m going to have to deal with occasionally. Obviously that’s little comfort with the unmitigated sensory hell that is going non-verbal and into a state of shutdown, but that’s beside the point. I do actually sometimes have to deal with the jarring sensation of my sensory nerves just choosing to go haywire for ninety minutes to two hours at a time. I do have to deal with the reality that when in that situation there’s nothing I can do to stop what feels like an intensely warm tingling across my body. I have to accept it, I have to work to continue my day relatively unscathed. Those episodes, regardless of when they happen, are exhausting. Nothing I can do can stop them and nothing I can do can prevent them; it’s sort of like a tornado, just without the violent whirling-the only thing you can do is hunker down and ride it out.
There’s also the other aspect of my lived experience which is an extreme aversion to social events. Not because I don’t enjoy being around other people, though I warrant that that’s a questionable prospect with some, but because I realize that too much “people-ing” genuinely exhausts me as well. When you’ve been conditioned not to stim, for one reason or another (mine was because of the fact that I went through ABA therapy in the early 2000s), inputs beyond a certain limit that have no quantifiable value is like trying to input a time beyond a certain date into a computer processor which was only conditioned to handle dates to a certain date.
I also have negative perceptions of the media to fight on my side. Regardless of the awareness aspect of it, I actually do bear some animosity towards Bill Prady and Chuck Lorre for creating Sheldon Cooper, and to the creators of Rain Man besides. The media consistently misportrays and intentionally obfuscates the positive aspects of my disorder because of the media angle of it. After all, what’s the point in sympathizing with a character who’s already human? When I mention that I’m autistic, the perception that many immediately have is for someone is who either narrowly brilliant (a savant) or someone like Sheldon Cooper, an emotionless robot who’s hellbent on some goal for another goal. Those perceptions are wrong, but in order to fight those perceptions, we need to have autistic voices in the media and in the world at large.
Simply put, the world needs more people like me and Greta Thunberg. Not because of autistic people’s movement toward some noble goal, but because if our world genuinely cares about the idea of neurodiversity, it’s apparent that voices need to be heard. We must work to keep shattering people’s perceptions of us.
The initial idea for this article was originally conceived thanks to an autistic journalist named Andrew Solender and his initial discussion of the pushback of people to the actions of Greta Thunberg in recent days, especially the truly vile response to her actions in front of the UN by Daily Wire journalist Michael Knowles. I’m going to address two of his tweets separately because they are separate ideas and they both merit their own consideration. Solender writes in the second tweet of the thread: “Don’t let anybody tell you that your disorder [Autism Spectrum Disorder] makes you lesser. It makes you stronger. More durable. More resilient. More adaptable. More intelligent. The world isn’t going to change for us. We have two options: change ourselves or change the world. I pick Option B.”
First, let me explain the history behind my own Autism Spectrum Disorder (from here on, I’m going to refer to it as ASD). I was diagnosed at the age of three. Asperger’s Disorder is a neuro-developmental disorder that typically manifests itself to the point of diagnosis at in early childhood (typically age 2-5 years). Some of those who are diagnosed with the disorder suffer from such neurological difficulties as not being able to talk and not being able to walk. “Lesser affected” individuals still can suffer from impaired or lessened fine motor skills and difficulties in adjusting to new environments, new social situations, and new routines.
Now, while my father always expected the diagnosis, it was a shock in any circumstance. A disorder which could change the entire trajectory of your child’s life will tend to be shocking, after all! The following year, I entered a specialized early intervention program for kids my age. My week was split between attending early intervention therapy and a part-time preschool for kids my age. This was out of necessity, not only to reinforce the skills I learned in early intervention but also to socialize me appropriately. One thing you’ll know if you’ve ever raised an autistic child is that when we find out we like learning about a topic, we will not stop researching it until we stop liking it and we will literally never shut up about it. I am eighteen years old and this is still the case.
However, that’s not the only story or morsel I want to disclose about my ASD. Up until I got to middle school, most years I only had one friend whom my father, her father, and the school administration intentionally figured out ways to keep together through to middle school. Most kids tended not to associate with me because I was different, not in spite of it. I vividly remember an incident in seventh grade when the first word that a kid used to describe ASD was “stupid” in a class assignment. I got the last laugh in the end, but I think that conveys a sense of just how misunderstood autistic kids, young adults, and adults can be. In not fitting into the societal box, whatever that is, we tend to be ostracized and we tend not to build the personal support networks that other people our own ages have.
This brings me to the second idea that Andrew talked about in his tweet: changing the world. I argue that the world needs more people like Greta Thunberg and myself. For two reasons: so that ASD can eventually be better understood by the greater mass of people and so that kids like myself don’t come home crying in third grade wondering why they have no friends. In giving autistic people like myself, Thunberg, and Solender a voice, we as a society don’t just say that their voice matters because the issues that they speak about matter, we say that their voices matter and that it’s okay to be the people we are.
I emphatically reject the first option Solender proposes, as does he, because the answer to people misunderstanding who I am is not to bend over backwards to oblige some societal expectation of what your average person is supposed to look like. The answer is to fight that norm so that we can at least shift if not eliminate the norm entirety. That’s why the Thunberg example is not only so poignant but also so prescient; she proves the efficacy of Option B as I hope I do as well. The world only changes, after all, if the people in it are willing to commit themselves to change it.
The second tweet I wanted to discuss in greater detail is Solender’s statement: “So to all of who say that I, or @GretaThunberg, or anybody else on the spectrum can’t achieve exactly what we want to achieve and exactly what neurotypical children can achieve-prepare to be sorely disappointed.” While I know that he’s correct, there’s one small exception to the rule I do want to note first.
People with ASD like Andrew, Greta, and myself are the lucky ones. We are the ones who will achieve either some degree of or complete independence when we’re older. We’re the ones who can and will be able to achieve big, bold, radical change because we’re able to put our faculties there. We’re the ones who are able to articulate what we want, why we want it, and how we’re going to get what we want. There are others of us who are not so lucky, every single one of us Aspies knows that, and we have to bring them into this story too. The media perception and the perception many of us have ingrained about people with autism is that they’re savants or Sheldon Cooper, either not asprelatively normal or so far removed from normal that they’ll need assistance every day of their lives. Simply, no movement to embrace neurodiversity is truly a movement to embrace neurodiversity if it doesn’t embrace all shades of it.
So, back to the idea of neurotypical achievement. When I was first diagnosed, I was able to talk, I could walk without assistance, I could feed myself, but I couldn’t dress myself and my coordination was, and still is, not the greatest. I overcame all of that. If you’ve ever read the bio that I wrote about myself, you’ll know that I’m a freshman this year at the University of South Carolina. That doesn’t begin to tell the story though. I graduated right on the cusp of the top ten percent of my class and I have tangible plans for my future that I’m deadset on. I eventually want to get my PhD in history and research, write, and teach at a university. When, not if, I succeed in those goals, it will be because of and not in spite of my ASD.
There are other things that I can also say that I want to achieve. In order to even study for my PhD, I have to study for my BA and I’m proud to say I’m on track to finish that degree in three years. I want to be the person who writes the authoritative text on the fall of the Liberal Party of the United Kingdom. I want to do research on why welfare liberalism began to predominate over market liberalism when it did. In the future, I eventually want to prod at the foundations of international institutions and to connect those to the domestic political undercurrents of the time (not in the vein of actors like Nigel Farage, but specific minute concerns). I have all of these goals for what I want to do with my future and more in spite of that. I don’t just want to be a historian, I want to be a philosopher and a political theorist besides. I know that those are attainable goals and it is because of the determination instilled in me because of having ASD.
To sum up my point with Andrew’s, being who we are doesn’t preclude us from attaining our goals and if anything it only helps us to attain them. I have no different chance of success when I’m myself than I would if I weren’t, and if I did, the system we operate under would be wrong, not me.
After all, I’m myself and I can’t ask for much more.
So, in conclusion, the world needs more people like myself and Greta Thunberg. Though it’s not necessarily for the reasons you might think. Most every single one of us Aspies has something we are incredibly passionate about, but that alone isn’t the reason the world needs more of us. The world needs more people with ASD to break down the norms that we’ve set about what autistic people are like and what they can be, what they can do and how they can do it. The world needs more people with ASD to show to the world that we are indeed a spectrum and not some narrow, constricting little box that defines us. Finally, we need more people with ASD to be visible because in order to change the world, everyone has to play a part.
Great post Alex!Report
Thank you, North!Report
I really enjoyed reading this. And I don’t think I mentioned it properly before, but great to have you writing for us! Exactly the kind of thoughtful, perceptive writing we appreciate around here.Report
Thank you so much!Report
Oh, don’t get me started on Sheldon Cooper. That character is not even a slightly correct depiction of autism. He’s a combination of OCD and Narcissistic Personality Disorder, as far as I can tell. He might _also_ be slightly autistic, but it’s drowned out by everything else.
I don’t have ASD(1), but I do have ADHD, and the media there is just as wrong.
Like, show me an adult character with ADHD, and they’ll be probably be hyper. Which most adults with ADHD are not. I wasn’t even as a kid. And they’ll be as distractable as a butterfly. Like…no. That’s wrong
They want to accurately depict a character with ADHD, they should show someone who…is bad at staying on task. Not the absurd ‘Oh, shiny!’ level, but someone will come up to talk to them and, when that person leaves, they won’t resume what they were doing, despite that being important. Or show someone with executive dysfunction (Which I don’t have much of, but a lot of adult ADHD people have.), who knows they have to do something, but just…can’t actually start. Or show someone who accidentally hyperfocused when they were trying to multitask and ignored the kitchen timer when reading something, so burned their foods. Or show someone drinks massive amounts of caffeine as a form of self-medication, or takes a medication that is supposed to make them sleepy which results in them being unable to sleep. Or used both parenthesis and footnotes in a post on the internet. (Ooo…self burn.)
That’s realistic adult ADHD. Like, the actual experiences of people with ADHD. As opposed to TV, where we’re probably Cloudcuckoolanders.
I just don’t understand why fiction can’t do it vaguely correct. Just…like, it’s easy to argue ‘If you are going to depict someone with disorder of some sort, find someone with that disorder and run the scripts past them’, but…they’re basically failing to even look up the symptoms of the disorders on Wikipedia.
1. It was once suggested I might, though, and I was tested. But I’m just a socially awkward nerd with ADHD.Report
Oh, and because I have ADHD, I forgot to put my point. People need actual depictions of themselves in fiction. I’m not sure I’ve ever had a single character I can look at and see them deal with the same sort of problems I’ve had to. In fact, not only is the depiction absurd, but…it’s not treated as something that can be dealt with at all.
‘Oh, that character has ADHD, they’re just going to run around in the background doing random things. They’ll never actually be helpful.’
vs
‘I have ADHD, so I write down everything I’m supposed to be doing. Yes, even stupidly obvious things that I clearly should be able to remember. Don’t assume I hear you call my name if I didn’t acknowledge you. Etc, etc.’.
As as kid with ADHD, it was the first I saw.
And the same with ASD, and other sorts of disorders. And…look, ideally writers would have someone with that disorder to run stuff past, and they certainly need to do that if they’re writing the story of ‘What it’s like for a person on the autistic spectrum’. I get it.
But…not everything needs to be that. Sometimes you just want ‘normal guy with autism’ on the screen as a random reoccurring character, so kids can go ‘Hey, someone like me with a normal life’. And just…writers? Read the internet. There are diagnostic criteria. Just…give someone those. Duh.
But instead writers just invent nonsense. Over and over again.Report
Great post!
I think most physicists and engineers mock Big Bang Theory because physicists and engineers are about the least likely people on the planet to go to a comic book store. They’re not known for a fascination with people, magic, and whatnot. They might find the equipment that prints and boxes the comic books interesting, though. They more likely watch Mythbusters or maybe PBS NOVA.
As an aside, my concern about history as a major is that although the way the field should be practiced is probably ideal for someone who can focus on arcane details to dig out the truth, many of universities are struggling to retain history majors because in the last few decades it morphed into “weaving stories to advance a cause.”
That got discussed by the late Keith Windshuttle in his book Killing History: How Literary Critics and Social Theorists Are Murdering Our Past
It turns out that the set of people who are really fascinated with history and who will dig through old city records for months to uncover some obscure patterns aren’t interested in weaving fact-free narratives, and the people who want to expound such narratives don’t like sitting through boring lectures on Reconstruction. So student retention in history programs has become a problem at many universities that abandoned the traditional focus for social fads. But there’s plenty of history geeks that majored in something else but devote enormous time an energy to studying and doing history.Report