I keep coming across statements such as “don’t let autism define you”, or that gem from parents who don’t mention any other facts about their child except their diagnosis and then add “but autism doesn’t define them”. So I thought I’d write up a few thoughts I had on this, thoughts it seems are common enough amongst the autistic people I mentioned this to.
Where to start? First I did what I often do when examining a statement. I check the literal definition of some of the key terms. In this case it’s “define”. What does it mean to let something define you?
Obviously I can ignore the definition relating to computing. And possibly the “set forth the meaning of (something, such as a word)” one. And maybe the “to make distinct, clear, or detailed especially in outline”.
So, that leaves us with “to determine or identify the essential qualities or meaning of”, “to fix or mark the limits of” and “characterize, distinguish”. Does autism (or rather, being autistic) define me in any of these ways?
Does being autistic determine or identify the essential qualities or meaning of being me? Well, yes, I think it does. What does it mean to be me? What are my “essential qualities”? If I were to strip everything back, I’d say most people’s essential qualities are things like how they eat, how they breathe, how they move, how they sense things, how they sleep, how they behave, how they react to things, how they think. And being autistic does determine or identify how I do these things. Hell, it even determines how I shit and fuck, if we want to get to the most “essential” of essential qualities. Joking aside, there isn’t a single thing about me that isn’t determined by me being autistic.
Which leads me rather nicely to the second definition “to fix or mark the limits of”. As we saw, every single thing I do is determined by my being autistic. But it’s not fixed or the limits aren’t marked by my being autistic. Maybe that’s the definition people mean by not being “defined” by autism? Being autistic does not mark my limits. Or rather, it does not mark all of them. I am limited by being autistic only in so far as society limits me by not accommodating my autistic way of being. So “don’t let autism limit you” might be the sentiment they were after, if by “define” they meant “mark my limits” but it still isn’t right. It’s not something I “let” as much as something I have no real control over. I cannot change how society treats autistics, at least not by myself.
So, how about to “characterize, distinguish”? Well, obviously being autistic distinguishes me from non-autistics. Same way being of a non-binary gender distinguishes me from binary gendered folk. Or being Irish and Turkish distinguishes me from people who aren’t. Or being short distinguishes me from tall people. Or any number of other factors that make up my identity as a whole. And so, being autistic does define me when I interact with non-autistic people. It “others” me in a non-autistic world, and binds me to other autistic people. And again, it’s not me “letting” this happen. If by “let” you mean “allow”, which implies a choice. It is outside my control as I’ll never be non-autistic.
Getting back to the original sentence “Don’t let autism define you”. I’ve examined two of the five words it contains, “define” and “let”. How about the word “autism” itself? What exactly is autism? Academic books have been written on the subject. It is beyond the scope of this blog post to try to define autism. Let’s just say it’s a lot more than just a set of diagnostic criteria. But in the context of the sentence I’m examining, it’s implied that it’s a bad thing. Something I shouldn’t allow myself to be defined by. Something to distance myself from. Which I’m sure you realise is a ridiculous thing. Autism is not inherently good or bad. It just is. Like every other thing that goes into making a human, being autistic (or not) has good sides and bad sides.
And then there’s the word “don’t”. I’m sure you’ll agree that it’s pretty rude of anyone to try and order me, or anyone, around like this. To be perfectly honest, I never react well to being told “don’t”. Who does?
Finally there’s the word “you”. I get to decide what does or doesn’t define me. You do you. It is not for anyone other than me to decide who I am, or how I should define myself. In the same way, parents of autistic children don’t get to decide who their children are or how they identify. Identities are too personal to be given to, or removed from, anyone but the person themselves.
Hopefully I’ve shown how “Don’t let autism define you” is not a sentence I agree with. Hopefully it’s one I won’t be hearing so often in the future.