Functioning labels and non-linear spectra

In the last few weeks, I’ve talked to a lot of people about autism. Most of my family have heard about my diagnosis and everyone seems very interested. I’ve been doing a lot of explaining things to an ignorant but open-minded audience: the ideal students!

The one most common piece of misinformation I’ve encountered is the idea of a linear autistic spectrum. Things like “You’re obviously high-functioning”, or “I guess you’re fairly mild”. These are understandable things to say for people who know very little about autism. I can speak, I can do things independently, I’ve (more or less) managed to get through school, and I obviously wasn’t diagnosed as a kid. If autism was a linear spectrum, I would be placed at the ‘mild’ end. But… it’s simply not.

The main source of the problem is the fact that most people are not autistic. And so, most people who study or think about or talk about autism are not autistic. That means that most information about autism comes from the perspective of non-autistic people. That’s why lists of traits contain things like “inappropriate eye contact”. If you asked most autistic people, they’d say it’s neurotypical people’s eye contact that’s inappropriately intense and demanding!

The point of that example is just to show that autism from the inside is very different to what neurotypical people see from the outside. And that is still very true when it comes to the idea of a linear spectrum. Neurotypical people look at all autistic people and try to find ways to divide up and make sense of autism. But their interpretations are based on how autism looks from the outside.

It looks like there are some people who can speak most of the time, and some people who can almost never speak. Surely that factor is the most significant and relevant one – for a neurotypical person the ability to speak is incredibly important. But for autistic people, it’s not that simple. Speech is not the only way to communicate, and it’s often not the best way. I can speak well most of the time, but I can generally express myself far better in writing – and I know a lot of other autistic people feel the same way.

So am I really all that different from someone who can’t speak, if we both communicate better in writing anyway? Trying to put a major distinction between us does nothing for anyone involved.

The only real reason to try and divide up the autistic spectrum is to be able to support and understand everyone individually – which is perfectly reasonable. But dividing us up with a straight line from “speaks a lot” to “doesn’t speak much” is focusing way too much on something insignificant, and ignoring many other important factors.

What about the fact that I have no innate sense of direction? Or that I can’t eat foods with mixed textures? Or that I panic if I stray too far from home? Or that I can’t tell when I’m being bullied and manipulated? Or that I can’t sit still and pay attention at the same time? Or that I am unable to study in a class full of other people?

Why are all of those things considered so much less significant than the fact that I can usually use vocal words to communicate with other people pretty well? The answer is probably just the fact that vocal words are a bit more noticeable to outside observers. But just because something is more noticeable from the outside, it doesn’t mean it’s more significant on the inside.

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One thought on “Functioning labels and non-linear spectra

  1. I tire of people who claim, “You’re managing so well. You must not be autistic.” Makes me want to throw things. I’m reminded how much work it takes to appear to be managing well, to actually get through the day of sensory overloading and repeatedly rephrasing my natural language patterns just to be understood. It’s exhausting. I think people miss that sometimes.

    Liked by 1 person

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