Some people say it and others I just see thinking it: “You don’t seem autistic.” It is mostly meant as a compliment but it is one with a jagged edge. The thing to keep in mind is that being different has, always, this in-built tension between not wanting to be defined by it and inevitably being defined by it. In the case of autism the Catch-22 reads this way: “I’d be insane if I accepted to be autistic but, if I’m sane, I have to accept I’m not autistic.”
So I’ve spent months being strong in order not to divert the attention of others to the way I’m feeling (or not feeling, to be more exact). I’m pretty proud of that because I was there when I was needed. It was tiring though. Whilst the gap between the world and me was, at least seemingly, small the internal chasm grew bigger all the time. Ultimately it, again, swallowed me in a vortex of alienation that left me literally lost. I am a lucky bastard and the people whose back I had when they needed me had mine when I needed theirs. But it is not a given that this is the case which is why I feel the need to explain myself.
The not so funny thing about categories is that the law of the excluded middle makes you take sides. You start out by naming something in order to understand someone better, in a certain respect. The label then takes on its own reality and in trying to explain it, it will become necessary to subsume people under it. This is done on their behalf, because they can’t possibly want to be that way. Except that we can and will wind up wanting to do it our way. At that point we take your label and proceed to own it by challenging what you make of it. “We’re not insane,” we’ll say, “you are for calling us that.”
All that is natural and unavoidable but it is also decidedly unhelpful as two sides have so been created. Positions get fortified. War symbols are created. One side carries the flag of the poor children (and their poor parents) who can’t speak for themselves. The other side that of the adults who cannot stop speaking for themselves (and their poor sisters). And then mayhem: you’re either for or against autism. I’m not so much interested here in the merit of one side or the other (but this is a clue: I can’t stop speaking for myself ;-). What I’m interested in is how all of this literally affects autistic people, because it does. It does in a big way.
It is only natural for people to want to be, at least appear, normal. It comes as natural for people to want to be special, or at least to be acknowledged as such. Imagine someone (it could have been me) who felt out of touch but decided not to give way to this feeling and consciously decided to fight to remain as much as possible ‘in touch’. Imagine she pulled it off to become what would be commonly seen as a ‘successful’ adult. Imagine that being proud of herself she nevertheless grew increasingly tired to a point of regularly burning out. Imagine her exasperated about the impossibility of getting any (self-)recognition that she did will despite achieving things against the odds. Imagine – finally – her crashing out to the point of needing psychiatric help in order to simply survive, getting a diagnosis of autism at almost 50 years of age and proceeding to ‘own it’.
Now consider the predicament of this imaginary person with a late autism diagnosis (she could well be me except for the gendered pronoun). Those marching under a flag of the “poor autistic children”, she is not really autistic – because she managed to hold her own. Under the flag of self-advocacy she needs to disavow her attempts to appear normal as a capitulation to the other side that enforced “neurotypical” behavior on her. She faces yet another Catch-22: “Side with neurodiversity or side with the ableist neurotypicals.” She’s stuck in no man’s land (better: no woman’s land as I have the funny feeling that women are better acquainted with being stuck there). As if ‘not seeming autistic’ – something that defined the best (!) part of her life – suddenly has become a punishment she inflected on herself. As if the life she led was a lie. On the other side, people saying – or thinking – that she doesn’t ‘seem autistic’ seem to take for granted that so seeming comes natural to her, as effortless as she has made it seem. Some do take this for granted because they define – consciously or subconsciously – autism as not being able to seem non-autistic. And this is, for sure, a self-fulfilling prophecy that underlies the whole Catch-22 situation because it excludes the middle position occupied for a lifetime by our imaginary person with female pronoun that could well be me.
The problem in all this – a problem jumped over by both sides preoccupied with the flags they happen to walk under – is that being autistic is as integral to our life story and world as ‘not seeming autistic’ is. Denying either one of those aspects is reducing out something vital in our identity: either the fact that we are autistic (there’s a reason why we want the world to acknowledge that it is way of being), or the fact that we do our effing best to not only be autistic (because, you know, most of us cannot make a living of being autistic and even if we could we would like to be acknowledged for being special in ways we chose to develop ourselves). I’m pretty sure, by the way, you can replace the word ‘autistic’ in this sentence with more or less any minority struggling to assert itself against the odds.
The key thing is to abandon this categorical misery and – really, genuinely – acknowledge that things are not always what they seem; that there’s something gradual at the basis of all this; that it’s a matter of life’s course to experience the tension between being one way and not wanting to appear just that way. I’m a lucky bastard because people around me do recognize the efforts I make to go out of my way and in so doing keep an open mind to go out of their way when I crash or burn. My recognition of their recognition is part and parcel of who I am and not something to be dismissed as foreign to my self, as something imposed by society or some such.
I am autistic and proud to spend the effort on trying to not only seem that way. The only thing I ask for is some respect for the middle ground I (and many like me) try to achieve, and neither condemn me for trying to belong nor take it for granted that I belong. That is something, I think, everybody who is not self-convinced of their own superiority can and should understand (even if is hard to understand the long, winding and verbose route in which I have tried to explain it ;-).