On not having been born autistic

Monday Madness

There is this idea that when one is autistic then one has to have been born autistic. Implying that one could have become autistic makes most autistics nauseous, as if they suddenly find themselves on the high seas in the middle of a storm. I feel it too. I really do. Which is why it took me so long to make this explicit: I am autistic but I was not born that way. The only thing that can steady my nausea - and hopefully yours too - is making the logical argument why it is liberating to shed the idea one is born autistic. Making this argument will show it is not only liberating at a personal level, it also liberates us from all kinds of unscientific and dangerous ideas surrounding the autistic/non-autistic binary. My argument proceeds as follows. First, I’ll break down why we cling to the idea of having been born autistic. Second, I’ll show that this shackles our thinking to a long tradition of pseudoscience in the service of the binary status quo. Third, I’ll present an alternative focusing on how one becomes autistic. This alternative is the one of the autistic knot that I develop in my book (unfortunately only available in Dutch for now, but I’m sure one of you will change that after reading this ;). Finally, I’ll muse about a more general account of developmental diversity based on my knotty ideas; a musing which will take us towards a more holistic view of the concept of (neuro)diversity.

You will see there is some (for me uncharacteristic) dryness to this post. This is necessary to counteract the nausea I feel in writing this and that I fear you will also feel in reading it. Why do we need the idea of having been born autistic anyway? We need it to resist the historical injustice of seeing autism as a socially determined bad outcome. For instance to resist ideas like refrigerator mothers who supposedly were so cold in bringing us up that autistics like me were condemned to have icy personalities. We could have become something better and the fact we didn’t is someone’s fault. Although we believe that we left this type of psychoanalytic narrative behind us, the truth is that when we behave autistically we just taste the instinctive blame directed at us. Why don’t we just try to do better? Who brought us up to behave badly in the presence of others? It is these questions that we internalize or these questions that we try to avoid. Sometimes to protect our mothers and sometimes to protect ourselves, because we want to do it right and, at the very least, we want to be able to spend our days without the constant sword of neuro-normative judgment hanging above our heads. And so we mask, or we simply avoid judgmental others. People who consider themselves normal will maybe find this a very crude summary, but the honest truth is you normies really tend to be so very rude.

Enter genes. It is no coincidence we latch onto them like we narrowly escaped the sinking of the Titanic and suddenly see a lifeboat nearby. Now we can say that we were born that way, that our brain has just been wired differently. Try blaming that. It never was us. In the end it’s society (including for some, maybe rightly, their parents) that was to blame for not accepting us the way we really are: for not accepting our true selves. And so we only narrowly escape social determinism to risk running headlong into mere genetic determinism. How’s that for a Catch-22? It is no coincidence that my autism career started with an article investigating how to escape this double bind. The classical attempt at escape is that of neurodiversity scholars who firmly keep their eyes on a judgmental and therefore entirely blamable neuro-normative society. Said sad society created autism as if it pulled a rabbit out of its hat of madness. Exit genes. It is social construction all the way down. I do not doubt for a minute that this effort of theirs is laudable and well intentioned. Unfortunately though, it misses the point of the reality of autistic experience. It just creates an additional double bind. Either it is genes, and blame is shifted to at best pity and at worst eugenic eradication or it is entirely social and we spend our autistic lives nagging about society denying us a chance of just being our true selves.

Every either/or generates another double bind until our bodies are so contorted that we can barely breathe, let alone come up with a constructive answer on how to simply move on with our lives. The logic at work behind all this double binding is the idea that either autism is real in a biological way or one has to oppose the biological reality of autism. The last sentence is just one example of the binary thinking permeating ad nauseam all the discussions about the lived autistic experience. To oppose a biological autistic/non-autistic binary is after all simply just setting up a new binary between biological and social views of autism. And, meanwhile, the autistic experience, which is one of very real gut feelings in response to really judgmental modern societies, stays frustratingly untouched. It is as if there is a heated discussion going on between very well paid emergency doctors about the right treatment options for a patient which is slowly but surely suffocating. The previous sentence is for many already a faux pas, as it seems to associate autism with patienthood. Well, autism is not a bad outcome, but any analysis of it that downplays the actual everyday challenges that autistics need to navigate is for sure simply a bad analysis. Here is my constructive proposal: let’s leave the either/or’s, the really’s and true selves behind us and face that autism just is double binds all the way down.

Autism then is the repeated experience of being called out for not behaving the way modern societies expect us to behave. Autism is the knot you feel in your stomach when you need to behave in ways that don’t come as natural to you as they come to most others. Autism is the energy your body needs to spend to live up to societal expectations set up for bodies which swim like a fish in those very same expectations. Only if we look at autism this way, we look at it in any real sense because only in this way we are radically centering the autistic reality, and not merely entertaining an academic discussion. The problem is not that we have academic discussions on the right way to theorize autism. The problem is that we merely have such a discussion, as if the autistic reality is somehow coincidental to what autism really is. Take, for instance, the discussion on autistic flourishing as a discussion about autistics swimming like a fish in some society which is yet to be built. I’m all for imagining better futures. Still, what is the benefit for anybody living in this society to merely point to how society should be? Does it make the knot in my stomach go away when I know I will need to face - again - the harsh judgment of a peer, a teacher or somebody interviewing me for a job? The fact is that my experience is rife with not flourishing. Theorizing on autism-blind societies fully ignores this very brute fact.

I know this sounds harsh, certainly for those autistics who grew up in a society in which they were privileged enough to at least dream about fully flourishing (‘those autistics’ are certainly most of the officially diagnosed autistics; we are simultaneously also but a tiny fraction of the actual autistic community, as getting officially diagnosed is mostly reserved for those born into privilege of some sort). It sounds harsh because being part of a minority is harsh and the escape into theories of flourishing is just that: sulky escapism. Accepting the harshness that underlies our realization that we are autistic, on the other hand, is a precondition for starting the struggle for social justice for autistics and against notions of autistic inferiority/pathology. Only through accepting that harshness can we follow Patricia Hill Collins’ counsel of leaving the either/or track and its double binds upon double binds and opting for a both/and strategy. A both/and strategy firmly rooted both in the everyday struggle of autistic people (diagnosed or as of yet not seen) and in the best scientific theories, to wit: theories that have left behind the binary thinking of social/genetic determinism. My ‘autistic knots’ theory is constructed out of both the careful study of autistic lived experience and findings in biology demonstrating all experience moulds the biology - the body - of the living creature having such experience.

And, obviously, the so-moulded biology in turn moulds any following experience of a living, in this case autistic, creature. Experience is bodily and the body is experiential And autistic bodies are those bodies that have the repeated experience of being called out for their body having a tendency to behave contrary to societal expectation. It’s as if time threads a needle through the material tissue of our bodies twisting and turning such bodies into a form that is uniquely and concretely us. Societal expectations shape our selves as necessarily as those selves are biological through and through. The double binds we face - the Catch-22’s of wanting to behave and live up to expectations and knowing that we cannot live up to our own wanting to live up to these expectations - is what makes us uniquely us. And if we are not a bad outcome then it is a bad analysis to suggest the world and us would be better if we would not have such an autistic knot weaved through our body. It would be a bad analysis to suggest something went wrong when our gut directed our brain to avoid certain situations, or when our stress reaction shaped our DNA to express certain genes rather than others, or when our brain latched onto a specific, intense interest in order to steady our nerves and our bowels. Both/and thinking is concrete and time-bound. It allows us to let ourselves be instead of wishing it all washed out.

To wish the harshness washed away, to wish to untie the autistic knot or to avoid the autistic knots to be tied in the first place, is ultimately just another - more intellectual - way to wish us away. This is why it is liberating to come to terms with the fact that we became autistic. Sure, there is some genetic predisposition to be sensitive to certain societal expectations, but that is not what makes us us. What makes us us is the specific trajectory of our development and wishing this away is just another - more complex - version of wishing ourselves away. If shit happened, the solution is not to forever focus on having it unhappened, as the arrow of time is irreversible. If shit happened the only way forward is to try to repair it by accepting who we are and accommodating this novel way of being as a possibility for imagining a better future. I know full well this is nauseatingly counter-intuitive, but this is only because we are raised to not stay with the trouble and to always try to find ideal solutions. And the fact of our matter is that in trying to untie the knots - say, trying to definitively unmask to show a supposedly ideal true self - we just go through yet another either/or contortionist act that further tenses us up to the point of breakage. Repair only comes through both facing what made us us and turning this reality check into something productive, something that allows us more, not less, becoming.

It might well be that reading this you feel I wound up waxing poetic about the details of what this autistic knot precisely is. I do not disagree. I am, after all, autistic, and I like my precision (if you read my book or browse my Google Scholar, you’ll come to appreciate this joke). The thing is that if you’re trying to find a needle in a haystack then the first thing to do is to make damned sure you’re first of all looking in the right haystack. And the fact of the matter is that we are not. We are having academic fist fights over how to search the wrong haystack. That is annoying and autistic people are annoyed (anyway, I am annoyed) as we want to move on with life as it is, not life as it should be (whether it is the eugenic version or the utopian future version). I hope I’ll find the energy to be more precise about my needle-searching in the right haystack; the haystack in which autism is really seen as a developmental diversity, i.e. as an outcome of a specific kind of becoming. The haystack also where there are many diversities of this kind, many neurodivergent knots where a certain tendency of becoming faces off with a certain way in which development has been normalized in modern society (modern society being a society that has become overly dependent on normalizing all becoming because it has become convinced that caring for diversity is, well, bad for the bottom-line).

We’ll see whether I find energy for this. It is not too important as good needle-searching is a collective and open-ended business (it’s haystacks all the way down ;). What is important is I make explicit who helped me identify the right haystack. I named Patricia Hill Collins above. I have referred implicitly to many feminist and postcolonial philosophers throughout this post. What I learned from those minorities is they don’t want to look away from the social injustice that was done to them. No, they radically center the concrete injustice done to them, mostly in the name of abstract ideals of how the world and the humans in it should be. They do this to propose ways of ameliorating their concrete situations. The last thing they want to do is to erase their history, the history they carry in their bodies and that still endangers their bodies. They are both proud of who they became and will not forget the painfulness of that becoming (in having been oppressed and still being wronged). And, although my knotty idea was formed in the context of neurodiversity research, the real lesson I have taken about what haystack to search is theirs and only theirs. Imagining a better future needs to be firmly rooted in seeing who is wronged here and now. Repair is not about forgetting the damage done; it’s about creating new possibilities of life in the wastelands created by history.

I firmly believe we are all knotty in myriad diverse ways. I can only reclaim my autistic knot. I am otherwise fully privileged. The world does not stop me based on how I look or with whom I have sex with, or whether people suspect my genitals are misaligned with my appearance or my pronouns. It did stop me based on my excessive insistence on sameness. This is surely a trifle compared to other minorities (or other autistics happening not to be white cis male middle class), but it is my trifle and I insist on putting it to the best possible ameliorative use: to try to have it help me travel to other worlds so I can learn a new thing or two. It will not help me to disappear the knots in my stomach, nor to straighten my knotty autistic brain. It may help me articulate why wanting either/or debates always lead to more death and destruction.