Helena Mary Cole

Here’s where I come down on whether or not autism is a disability (a controversial topic among autistic people): it is.

I know why some autistic people get so passionate, insisting it’s not: they want embrace the positives of living with it rather than dwelling on the negatives; maybe they don’t want people to pity them; maybe they’re managing the condition relatively well – maybe they’re doing pretty great in life – and have trouble seeing themselves as disabled; or maybe they’ve been struggling in life but recognize that with some simple accommodations, they’d be kicking butt. They don’t see how a difficulty with a solution can be a “disability.”

They’re not wrong. But this is just it: needing accommodations that most people don’t need is pretty much the definition of disability. Technically speaking, if we subscribe to the medical model of disability, being nearsighted is a disability. But the nearsighted don’t usually bump into any barriers because of their nearsightedness, as long as they have their glasses (a simple accommodation). Some of us, on the other hand, regularly bump into barriers because of a condition we have. Another way of wording my definition would go: being disabled means that society was not set up with you in mind (a.k.a. the social model of disability).

And why should the word “disability” be such a dirty word? Rather than denying autism is a disability because we don’t want to be pitied, why not work to create a world where disability is not seen as an automatic negative?

But I want to illustrate and defend my position that autism is a disability. I’m about to share and example that has plagued me all my life because it’s related to what is expected of pupils/students in classrooms, as well as employees is workplaces, and also in many social situations. But I’ll stick to the classroom situation because my problems there affected me the earliest in life and for the longest amount of time. For me, the disabling thing about school always was this: the definition of “participating in class” is “talking.” The very definition. This leaves autistic people like me in the dust.

People don’t often realize exactly what orally contributing to a group discussion entails, because they do it automatically without thinking about it. In a group discussion, one must take in and process a lot of information within a short space of time, because many people will be taking turns talking. Each person who talks will not only be using words but also communicating with facial expressions, gestures, tone, body language. There will also always be other sensory factors in the room, like everyone having used a different shampoo or maybe put on perfume or cologne. There may be bright lights or loud noises that most people are easily able to ignore. Someone in the group may be grumpy and giving off a distinctly negative air. Most people are able to take it all in, process it quickly, formulate appropriate spoken responses, and speak them aloud within an appropriate amount of time.

An autistic brain simply is not that coordinated. It gets overloaded with information and sensory input very quickly, and the longer the group situation goes on, the worse it gets. There will be varying degrees of being able to read the non-verbal cues from autistic person to autistic person, as well as with how quickly we’ll be able to process that information. I may still be processing things that were said at two in the afternoon at midnight when I’m trying to go to sleep. Being able to formulate an appropriate spoken response on the spot is a huge struggle for me. Even if I can do it right there in the moment, I may need to rehearse what I want to say a few times in my head before I can say it. But often, by that time, the right moment for saying it has long since passed, and then I’m trying to catch up again with everything that’s been said in the meantime. But usually, a proper response does not come to me until hours have passed, maybe even a day or two.

It’s not a lack of intelligence, it’s a lack of coordination in the brain, coupled with a certain amount of social blindness.

So it is a very common thing for an autistic person to be unable to speak in group discussions, and yet doing so is embedded right there in the definition of “class participation.” My parents were always coming back from parent-teacher meetings saying, “Laney, your teachers want you to talk more in class. They know you understand what’s going on in class because of your written work, but they want you to talk more.”

First of all, I couldn’t understand why my talking in class was something they were insisting on, when my written work was good. Second of all, it’s not like I didn’t want to talk more in group situations, not just in class but also socially, but for reasons I didn’t used to understand, it simply wasn’t happening.
By the way, not every autistic person’s autism manifests this way. I’m the quiet type of autistic person, but there’s also the loud type. The louder type will be just as socially blind and have just as much trouble processing things, but they won’t be bothered by any of that, and will talk anyway. In their case, the trouble will be, not in knowing when and how to start talking, but in knowing when to stop talking. They talk and talk and talk and don’t see the difference between what they’re doing and what everyone else does socially. They don’t know that they’re dominating the group in a way that’s not appropriate and won’t be able to read the cues when other people are trying to jump in, the common denominator between them and me being a basic difficulty managing the back-and-forth of conversation. But that’s an aside.

Anyway, at this point, I want to touch on something I hinted on in a previous post: having an autism diagnosis now has brought me a lot of healing in this area. I mean, it does hurt to be constantly harped on for something you want to do but can’t. People didn’t understand why I couldn’t talk in groups so they would attribute it to anxiety. People would try to encourage me by saying, “We all struggle to know what to say in class – none of us really knows what we’re doing – just try stepping out of your comfort zone and see how great it’ll turn out.” And I didn’t know any better because I was undiagnosed. For all I knew, they were right, and I was holding back on purpose out of fear. The rub is that anxiety disorders go hand in hand with autism in this day age, so I knew anxiety was a factor. So I believed the problem was lack of courage.

After a while, it did a real number on me, this belief that I could talk in class if I would just get brave enough. You develop a lot of highly negative attitudes towards yourself. So, you can see how having an accurate understanding of the situation can counteract those negative beliefs, quite strongly. The teachers didn’t know I was autistic; I didn’t know I was autistic. They thought they were helping; they didn’t know they were hurting. They didn’t know that; I didn’t know that. You have to be gracious or you’ll go stark raving mad.

They really did think they were helping because, when it comes down to it, my written work in school was not enough. School is partly about preparing for the workplace, and as I said, a lot of workplaces do require “participation” in meetings, which again, means by definition “talking.”

So, this is where society needs to do a lot of work if we ever want to get to the point where autism isn’t a disabling condition.

Once, when I was in my third year of university, I took a course in Victorian Literature. The coursework in that class involved submitting regular “exploratory essays” about the texts we were reading. Unlike a normal essay, and exploratory essay is not written to support an already-formed conclusion. It is what it sounds like: a paper exploring an idea, designed to walk the reader through the process of discovery, and the conclusion might be very different from what you originally thought it was going to be.

When the class was reading Olive Schreiner’s Story of an African Farm (what a text to be mentioning on this blog! The prof was an outspoken atheist), I submitted an exploratory essay as required, but didn’t really think too much of it. Victorian Literature was a popular class, and was set up with all the desks in a huge square to encourage a lot of group discussion, so of course, I never found myself able to say anything. I’ve always been pretty self-conscious about always being the silent one. I had a habit of scoping out others who weren’t talking and comforting myself with, “That person never talks, either, so at least it’s not just me.” If that person did eventually manage to speak up, my heart would sink. It was just me.

But anyway, I was very surprised when, one day, not long after I handed in my essay, the first thing the professor did was read my entire essay aloud to the class. I had stumbled upon something while reading Story of an African Farm, an important image that was vital to understanding the protagonist. The class spent the first portion of the hour discussing what I had discovered.

I left that classroom that day feeling like a million bucks. This was the first time I had ever meaningfully contributed to a class discussion in my entire university career. And I didn’t have to say a word! This, I think, is one way in which society can tap into this valuable human resource (i.e. autistic people) sitting there right under its nose, looking for a way to contribute that actually works for them: offer autistic people an alternative means of communication besides talking.

Since I became involved in online autistic communities, I’ve also noticed that showing up at a YouTube live chat is another way I am able to contribute to group discussions. If the medium for communication is writing/typing then you will hear from me, if I have something to say, unless it’s a very bad day. In a YouTube chat, I can take in what’s being said in a low-pressure situation (being alone at home), and I don’t have to worry about finding an opening in the conversation (yet another thing most autistic people struggle with). If I can type out what I want to say and hit enter, voila, I’ve contributed.

So, you know, maybe there’s some way to bring live chat technology to the classroom and workplace. An autistic person would also be better able to talk in a group situation if we’re given time in advance to think through what we could say, maybe write out what we want to say. In my case, I sometimes benefit from using a text-to-talking app, where the app does the actual speaking for me.

Talking can take a lot out of an autistic person. When your brain is working ten times harder than most to be able to talk in group situations, you get exhausted pretty quick. There are times when forcing me to talk in that situation would send me into meltdown. Really, it is draining in the extreme. But again, it depends on the day and the circumstances. Add exhaustion and stress to an autistic person’s plate and all bets are off. That thing they could do yesterday is off the table today. That thing they could do easily among their friends and family might be impossible when you add the stress of strangers being present.

So, yes, in my way of thinking, autism is a disability that is currently not well-accommodated. I would love to see better accommodations in the future, for my own sake and especially for the sake of my kids.

And hey – in China, the definition of “participating in class” is “listening.” It’s a different philosophy of education over there. The idea is not “we need put our heads together to find the answers” but is rather more like “be quiet and listen to the answers wiser people than you have already discovered.” In the first philosophy, you run the risk of wasting a lot of time on half-baked solutions that will fail; in the second, you run the risk of stifling innovation. But the point is, China is far less disabling to autistic people than North America, in that way. I am an excellent listener.

But if society here and now is insisting on having everybody contribute their own ideas in groups, right there on the spot, I don’t think the accommodations I just suggested are a bad starting point.