The subject of autism diagnosis in later life is big news currently. It’s something we discuss a lot among ourselves, and is increasingly the focus of attention outside of the autistic/autism communities.
Such accounts are typically framed in terms that are becoming firmly fixed in discourses among autistic people – suggesting that diagnosis confers “self understanding”, and “identity” and explains who we are as individuals. There is also the suggestion that this “self-discovery” links us with others who are similar to us, though this is generally articulated in terms of the individual comfort one can take in recognising that others too are involved in such journeys of “self understanding” and “self discovery”. It is apparently comforting to the individual to know that there are others who are similar to oneself, and are similarly bruised and broken by a world that doesn’t understand and recognise our “self”
Flowing from this comes a search for the “true” autistic self. The self that we could apparently have been, if our autism had been recognised earlier and we’d been allowed to grow up as our “true” autistic selves, free from the pressure to conform as “fake neurotypicals” (a goal that seems to disregard the rather obvious social fact that upon diagnosis, our autistic selves, far from being allowed to express themselves, are oppressed and stigmatised as autistic. I’m unclear about what early diagnosis would do to eradicate this).
And I have real problems with this idea of “true” autistic self. I recognise that it is important for some people, but for me, I don’t think I have one. I am not just “autistic”, I am “autistic in the world” – I always have been, and I always would have been, regardless of when I received my diagnosis. But I also find focus on the search for “true” autistic self politically very problematic. I don’t just think it’s an illusive, ultimately fruitless, but essentially benign quest. I think it’s potentially quite distracting and harmful, so I’m going to try to argue here why I think this is the case. I have two points to make.
It ignores the work that goes into making an identity – and thereby psychologises, individualises and depoliticises us
One of the things about our understanding of autism, that I think arises from the control that psychology, that the DSM/ICD and that diagnosis have on it, is that it is often seen as something “natural” that we “can’t help”. It is supposedly based on observation of our “natural behaviour” and on our (and often our loved ones’) self-report of the same. My own psychological reports say that I would probably outgrow my diagnosis as I learned to adapt – as I learned coping strategies. This was intended to give me (or possibly my loved ones) hope. It was written from a perspective that sees Asperger syndrome as a diagnosis, as a deficit, as a Bad Thing that makes my life worse and from which I would (should?) hope to be released.
In terms of identity, this sort of explanation is extremely troubling. It suggests that a fundamental part of who I am is problematic, and something from which I would seek to separate myself (as one does with “sickness”). And the temptation, in response to such trouble, is to argue back in precisely the terms of “natural” and “can’t help it” – is to point out all the ways in which I am still observably autistic in terms of my “natural behaviour”. This is tempting, and feels important because any suggestion of “doing being autistic” would be understood in terms of “faking” or “putting it on.” So if I want to keep the identity – I have to argue in the very terms of psychology under which I was diagnosed. I have to play psychology at its own game that defines autism as externally observable, “natural” and “can’t help it” diagnosis. Anything else risks the diagnosis – risks my identity.
But this denies me any agency in shaping my identity. It makes me powerless. It doesn’t allow for my own political position, which is to argue that although my genetic profile, and my clinical and social history would suggest that I was born autistic – that I actually get some choice in how I deal with this in my everyday life. I make choices about my autism in a way that is disallowed by the language of psychology – of diagnosis, of “natural” and of “can’t help it”. I make decisions about when and how I “come out” as autistic – I make decisions to put myself in situations where I may have a “meltdown” or a “shutdown” – I make decisions about whether to wear my headphones in public (the sort of thing that can get one accused of “faking” if one sometimes chooses to bear a situation that is almost intolerable so as not to look different or odd, and sometimes chooses to go with different or odd rather than horrific and painful) – I make decisions about whether to flap my arms in public when I’m excited (which feels good but looks odd) or to sit on my hands and internalise the flapping impulse (which is exhausting and sometimes dislocates my wrists).
I also make the daily decision that my autism is a political thing. It isn’t something I routinely suffer silently in shame and individual isolation (though sometimes I do). It is a community of which I’m part and is a way in which I understand the politics of difference and oppression – and it gives me a commitment to social justice and to trying to understand the oppression of others (while recognising absolutely that their own experience of oppressed identity is as special and different as mine.)
This is the work of “doing” identity that is not accounted for in the language of “true” autistic identity – and the language of “true” autistic identity actually plays into the world of psychology, of diagnosis, of observable and “natural” and “can’t help it” that I’ve tried to show challenges my construction of my autism as a political and politicised identity. The search for “true” autism identity, to my mind, therefore gives too much power to psychology to label and control autism, and to locate it as something in the individual that they “can’t help”. It is depoliticising and therefore, to me, unhelpful.
It fails to challenge neurotypical oppression and is politically unhelpful
Going further and expanding on the political nature of autistic identity as I see it, I don’t think that a quest for “true” autistic identity has any place in my autism politics. For myself, I reject the idea that I have a “true” autistic identity that is waiting to be discovered beneath a surface of learned/imposed neurotypicality. I am me. I am autistic. I interact with the world on a daily basis. I’m part of the world, and I have been from the day of my birth. Certain parts of me are accepted by the world, and parts of me are rejected and ridiculed by the world. But they are all “me in the world”. My focus is on changing the world so that those parts of me (and others) that are currently rejected and ridiculed might be understood, accepted, embraced and made use of. The search for a “true” autistic identity plays no part in this.
Jim Sinclair was emphatic years ago, when they wrote their powerful statement, “Don’t Mourn for Us” (which I wrote about here) that as autistics, we are not typical people trapped in a shell. There is no “normal” person trapped inside us waiting to be released. This is a strong political argument against autistic “conversion therapies”, ABA and other attempts at “cure” – in the sense that there is nothing inside the “shell” waiting to be cured!
But I’d develop this argument by saying that just as I’m not a neurotypical person trapped, awaiting release by a benevolent, expert (neurotypical) therapist, I’m also not a “true” autistic buried under layers of neurotypicality. What I am, is an autistic person who has lived since the day she was born in a world of neurotypical oppression. My identity has been constructed, produced and is reproduced on a daily basis in the context of this oppression.
This construction is a shifting, developing process of molding and sculpting rather than a suffocating process of layering and burying. What we talk of as “passing” or “camouflaging” may feel like specifically autistic work of “burying our true autistic selves” – but what I’d argue it actually is, is the work of “doing identity” (which people – autistic or not – do in lots of ways – the words we use, the clothes we wear, the people we have sex with…). The important part of “doing autistic identity” is that certain parts of our “doing identity” are currently seen as socially unacceptable and oppressed (as they are for other marginalised, stigmatised identities that fall short of society’s demands and expectations.)
The oppression is the thing I want to change, and the search for a buried (fictional) “true” autistic identity distracts me from this. Searching for it (even if I thought it existed, which I don’t) is not helpful to my political agenda, and is therefore not something on which I want to concentrate my energy, my attention and my efforts.
And that’s why I personally struggle with “true” autistic identity.