“Why would you want to be restricted by a label?” is a question which apparently is often asked when people identify themselves as autistic. “Why would you even want that?” And indeed, I have lived for over 40 years without such a label. So why the sudden effort to label myself as Aspie/autistic now? I don’t need it for anything, not at the moment anyway. I don’t want access to any services. I might not even tell anyone if I had that label. It would be purely for myself. So what good would it do? Would I not just restrict myself, put myself in a box, limit who or what I could be?
Well, it can be this way, but it doesn’t have to be. Your label is what you make of it. You could see it as limiting, a strict delineation of capabilities and “impairments”. That is probably what it looks like most often from the outside.
But that’s not the only way. There are positive sides to a label. It is actually liberating to put a name to what you are. It feels like finally things fall into place, and you can express your identity with words that others will understand. It enables you to find community with others with the same identity.
Let me make an analogy. It felt liberating when I realised I was asexual and could use that word in front of myself and others. I was no longer someone vaguely weird or wrong or deviant from the norm: what I felt, asexuality, was actually a thing. It turned a negative into a positive. I put it no longer in terms of what I’m lacking – ability to enjoy sex, desire to form intimate relationships, or whatever – but in terms of an identity, of what I am – asexual.
What I am hoping for is to reach a point where I can do the same with autism. No longer would I have to express my way of being in negative terms of what I am not, but with a positive statement: I am an Aspie.
Looking at my life, it is obvious that many things are difficult. Phonecalls. Remembering tasks. Making friends. Behaving “normally” at parties. There might well be coping strategies, ways to minimise these difficulties, solutions to my problems, workarounds. But if I’m supposed to be neurotypical, I shouldn’t even have these problems in the first place. And that is the second thing the Aspie label would give me: permission to have difficulties. Up to now I’ve always been hung up on “should”: you shouldn’t find this hard, you shouldn’t make such a fuss about this, you shouldn’t be afraid of this or that. How can I start to work on my problems if they aren’t even supposed to exist?
The label would free me from the tyranny of “should”. Let me make another analogy: if you are feeling low, apathetic, miserable etc., shouldn’t you be able to just snap out of it? Shouldn’t you just pull yourself together? But if you are diagnosed with depression, it becomes clear that snapping out of it and pulling yourself together won’t work. With the label for your inner state, though, you have been given a new starting point and can look for strategies which depressed people might use to manage their lives. “Should” is no longer valid for you.
In the same way, I currently live under the tyranny of “should”. I should be able to chat to strangers with ease. I should be able to just get up and do that thing already. I should be able to just make that phonecall. (Was there ever such an anxiety-inducing phrase as “just pick up the phone”?) If I could justifiably label myself as autistic, all those “shoulds” would vanish in a puff of smoke. They no longer would apply to me. I would no longer have to measure myself against NT standards and fall short every time. Instead, like the depressed person in my analogy, I could be given a whole new starting point. I could then begin to search for strategies that might work for people like me. I could find out how other autistics approach this or that. What have they found useful? What would an Aspie do?
You could say that, whether I’m autistic or not, I could always approach life “as if” I was and apply those strategies all the same. True, I could. But that would not banish the whisper of “should” in the background, telling me that really, I shouldn’t need those strategies, and that I’m a failure because I do.
“As if” isn’t powerful enough. To really liberate me, it will have to be “yes, I am”.
(Image: The old stocks at Chapeltown, by Austen Redman, via Wikimedia Commons)