“Autism doesn’t define you”
“Autism isn’t you!” or “Autism isn’t who you are!”
“Autism isn’t your personality” or “Autism isn’t your whole personality”
“Autism is only part of you” or “Autism is only one part of you”
“Autism isn’t a part of you”
These are all statements I’ve heard/seen people say/write about autism in relation to self. Also feel free to replace the “you” in all of the above with a “me”, because some autistic people say such things about themselves, and a few are very keen to emphasise these sorts of sentiments.
Why do people, autistic or otherwise, feel the need to say these things? We need to look at what lies behind these types of statements. What assumptions do they carry? Let’s do some unpicking…
What is undeniable is that all of the above statements revolve around creating some degree of distance between autism and the self. Why do we generally like to create distance between things? Usually it is because one of those things is seen to be negatively impacting upon the other. In this case, it is pretty clear what is presumed to be negatively affecting what. (Hint: the concepts of “self” or “personhood” are not seen as inherently negative things impacting upon a neutral and innocuous “autism”.)
This is one reason I dislike these genre of statements: They imply – and non-too-subtly in my view – that autism is a negative thing. Meanwhile, we, as people, are neutral/positive things, and so it is surely right and sane for us to want to distance ourselves from this autism negativity so as to preserve our neutral/positive status as people. This is what these statements say to me.
This leads onto my second point: separability. If autism is not a part of me, let alone a defining part; if autism is not in fact me, then we have established a separation between being a person and autism/being autistic. Somehow, the two aren’t quite compatible in people’s minds. Otherwise, why the need to introduce any distance? Distance to serve as a reminder that here we are talking about two quite seperate things: personhood and autism. Quite seperate apparently.
There are two big problems with introducing this separability. First, it isn’t in the slightest bit scientifically accurate or reflective of neuro-biological reality. Second, it leads us down a well-worn road of the systematic dehumanisation of autistic people. I will attempt to address each of these below (although there is significant overlap between them).
People seem to think that autism is a thing, a something, somewhere. But where exactly is autism? This is a genuine question on my part. I am legitimately puzzled as to precisely where people think autism is (given that they don’t seem to accept autism = person).
Autism is seen as its own thing, an entity unto itself. It is appendage (person “with” autism), it is a disorder or condition that somebody has. It is something belonging to a person, it is not that person themselves.
But autism does not, cannot, exist outside of a person. How can it? We don’t have autistic air, autistic trees or autistic cats (although honestly all cats are surely autistic :p). We don’t have autistic anything, except for autistic people (which sort of suggests that autism might have something to do with being a person).
Then again, perhaps I’ve been looking in all the wrong places. Perhaps I haven’t been paying close enough attention to what people “with” autism are presumably carrying, to what is attached to them (then again my attention to detail is pretty good, heh…). If autism isn’t a part of you, then it must be visibly and externally attached to you. But I see no sign of anything. Autism itself (as an appendage) seems to be somewhat missing.
It seems the noun “autism” has far too much power here. Perhaps we should be using the adjective – “autistic” – in its place far more. Over-using the noun, as is definitely the case (e.g. as in person-first language), has probably contributed to us seeing autism as a thing, an object, as something other than a person, as something separate (which was probably the entire point of course). Nouns are for things. Adjectives describe, and often define, what people are.
The fact autism can’t be seen – because it doesn’t actually exist outside of or in addition to a person – explains why there is a ridiculous amount of metaphorisation surrounding autism. People insist autism is a thing, a thing outside of or other than a person, and yet it can’t be seen or defined, hence why we fall back on using metaphors. Metaphorisation is a technique we tend to use in relation to things that are hard to pin-point, describe or understand in their own terms.
Moreover, the inherent negativity associated with autism, explains why we have so many autism-as-seperable metaphors specifically. In a chapter in the book Loud Hands, entitled “Metaphor Stole my Autism”, Zoe Gross provides an excellent account of how and why this sort of metaphorisation has taken hold, and of its detrimental effects.
Ergh, yuk. We don’t want any of that insidious autism actually being associated with actual personhood, that gets to close to us, the real people. We need to shove some big bulky stuff around that autism, between it and being a person, we need to contain and constrain it somehow.
The fact that autism is framed this way: as negative and as separate to personhood, feeds directly into dehumanisation. If autism is (big breath…) barrier, bubble, seige, death sentence/living death, alien, puzzle, mystery, void, trap, other world, wave, kidnapper, battlefield, machine, or any other number of sinister-sounding metaphors, then the person “with” this autism is only really a person without it. (Or, for the less extreme version, autism is always seen as somehow detracting from the person you have in front of you).
Perhaps underneath it all, we are simply presumed to be neurotypical? If this is the case, the autistic person (who isn’t seen as existing) may be in danger for their life (which, after all, doesn’t really exist – and if it does, it’s probably not worth living, and certainly not as much as nonautistic life). All this sets the stage for treating autistic people as less than (and/or simply serves to legitimise poor treatement that is happening anyway). This maltreatment can take the form of highly misguided attempts to remove what is in actual fact an autistic person’s personhood (being autistic) in a bid to make them a real (aka nonautistic) person. This can mean ABA (attempting to plaster over autistic behaviour), it can mean encouraging dis-identification from our identity (e.g. through ableist messages which often become internalised), or in the most extreme form it can mean literally removing our autistic-ness/personhood – the only means of doing so, being to kill us.
So yes, I’ve made a leap from “autism doesn’t define me” (which may seem like a fairly innoncuous statement on the face of it) to filicide within half a blog post. Perhaps, given the wrong context, the two aren’t as unconnected as they might first appear.
Returning to the other problem: accuracy. The other day, I heard an autistic person say “autism isn’t part of me” (something which goes far beyond a mere “autism doesn’t define me”). If autism isn’t a part of you, then what precisely is it a part of? First of all, where is it? Not inside of you? (we covered that above). If you accept that it is inside of you, but not a part of you, then how does that work? Where inside of you does “the autism” like to hang out? In your left hand? Your tiptoes? Your stomach? One part of your brain, but with all of the other parts being left untouched? And, presumably, if this place inside of you containing the autism is not really a part of you, then it is entirely unconnected from everything that is you…?
None of these questions make any sense. This is because autism is not a thing. It is therefore not localisable in space, not fixable (in both senses of the term), it cannot be seen or found anywhere. This is because autism is not really an it. “Its” are reserved for objects, not for people. We’ve just established autism is not an object-thing.
So here is the real answer we’ve all been waiting for:
Autism is… a person! Autism = person! Autism = human brain, an entire body-brain in fact!
If autism is not a part of you, then – I’m sorry to say – there is no you. (Of course, you can think-feel it is not a part of you, and still exist. Not feeling or believing autism is a part of you, is not the same as it not in fact being a part of you.) You would not be here, existing in this world, saying that “autism is not a part of me” if autism was not a part of you. Autism is you!
Autism is a word used to describe a certain type of brain wiring and associated neurology (which extends into and throughout the entire body). Unsurprisngly enough, we can’t be in this world without a body-brain. Hence autistic people cannot exist in the absence of autism (in the absence of their autistic body-brain). You see: Autism = person. Autism = autistic person. Quite simple.
As for “autism doesn’t define me”: People who say this accept autism is a part of them, at least. But then they stop there. There has to be a place to stop, right? Because it cannot be all of them. It is not what they are all about. Surely, for the love of god, there must be some nonautistic bits swimming around in there too? Some sort of redeeming quality?
Ultimately, I think that the “autism doesn’t define me” statement betrays a lack of understanding about what autism is. Autism is not just a label, a diagnosis, nor even an identity. It is all of these things, but not without being a neurology. And guess what? You can’t have bits of autistic neurology mixed in with bits of NT neurology. It’s one or the other. So for autistic people, autism is all of our neurology, no question.
But does our neurology define us?
Well, it influences every single thing we sense/don’t sense, feel/don’t feel, say/don’t say, do/don’t do; the way we perceive, move, cognate, emote, relate, every single moment of every day, from cradle to grave… so that sounds pretty defining to me. Neurology defines perception and movement, which are the buiding blocks for cognition which then shapes behaviour, feeding back into perception and cognition and on and on in a self-reinforcing multi-directional loop. There’s nothing left untouched by any of this really is there?
Woops, looks like autism might just define you.
The real question, I think, is not “does autism define you” as an autistic person (it does). It’s “do you accept that it defines you?” And if not, then why not? I’d hazard a guess and say that the answer likely has something to do with ableism. Perhaps, then, it’s this we should be railing against, and not autism. The problem is not being defined by autism, it’s people’s (mis)definition of autism.
Autism is a “lens” (a metaphor, in this case, for a body-brain) through which all is filtered (perhaps even our autism is filtered through our autism!). “Not being defined by autism” presumes that autism has its limits, that there are places autism cannot go. That somehow autism cannot encompass the totality of the human experience and all its possibilities. If we accept, instead, that autism touches everything, that it has no bounds, that it is not in itself limited or defined in certain ways, then it probably wouldn’t matter so much to be said to be defined by it, would it?
To my mind, autism should occupy the same “status” as nonautism. It should be seen within the same genre of things (although we are not talking about things) – as a neurotype, and not as a psychiatric disorder/condition or anything else. To any NT readers, I ask, are you defined by your nonautism? You’ve probably never thought about it (which reflects the privilege of being within the neuro-majority), but you most certainly are. And in just the same way that we are defined by being autistic. If you were said to be defined by you nonautism, it probably wouldn’t bother you much (I can’t quite imagine any NT proclaiming in exasperation “I’m NOT defined by my nonautism!”). After all, nonautism doesn’t imply any stigma, or limits, what you can or can’t do, how you must or must not be defined. You are simply free to be a person. You are nonautistic in your definition, without it ever being defined.
I want a similar thing to happen for autistic people. I think there is one important distinction, though. As a marginalised minority group there is obviously a lot of power and potential in us emphasising our identity/definition as autistic people. In fact, having this ignored and/or misunderstood is a large part of the reason why we face many of the struggles we do. Having it be made visible and emphasised is a necessary and important way for us to get our rights met and, hopefully, to some day get to the point where “autism defines me” is not some sort of strange, questionable, icky (or even necessary?) thing to say.
Suggested readings on this topic:
“Autism defines me”, by Autistic Zebra – https://autisticzebra.wordpress.com/2018/10/28/autism-defines-me/ . This is a good piece which raises a distinction between being “defined” by autism and being “limited” by autism. When people use defined, they might really mean limited. Still, the whole being/not being “limited” by autism thing is something that could do with some unpicking too.
“These poor unfortunate mixed metaphors are trapped in a wall of autism”, by Angry Autie – https://angryautie.wordpress.com/2013/09/16/these-poor-unfortunate-mixed-metaphors-are-trapped-in-a-wall-of-autism/
“Metaphor Stole My Autism”, by Zoe Gross, in the book Loud Hands: autistic people, speaking.