Am I a Person or Am I Just a Brain? On The Importance of Nuance in Neurodiversity
Going beyond the medical “deficit model” to reinstate autistic people as multidimensional subjects — and why neurodiversity theory doesn’t need to deny our impairments.
Reducing People To Their Brain: The Eugenist Heritage of Science on Autism
Sometimes, as I read through scientific papers that speculate on what is wrong with my brain, I wonder if anyone has ever put the researchers’ brain to the same level of molecular scrutiny. I wonder how they would feel if autistic people dominated universities, speaking about their brains and lives in the same terms as they speak about us. Have they ever even wondered about this?
As I struggle and I grapple with my brain functions in the midst of Autistic Burnout (capital letters), who can blame them? Aren’t they doing my own good, looking for something that could explain why any conversation feels overwhelming, why speaking can feel like squeezing my brain, or why my executive function has gone on permanent holiday from the day I hit big B last year?
After all, I do relate to some of the things that are described by people who hit their head somewhere and got a concussion — neurotypicals with brain damage who describe the same memory issues, overload, dyspraxia, and executive dysfunction that I am lucky to get for free. Wouldn’t I take a pill to improve the quality of these brain functions? I’m not gonna lie, folks…I wouldn’t refuse the gift of being able to speak whenever I want without feeling like someone put my brain in a lemon squeezer, or the opportunity to have a functioning episodic memory. Imagine the freedom.
However, I also wish that the scientific community could approach the topic of our wellbeing without being such obvious, massive, jerks. At this point, I would honestly love to just storm into a scientific conference about autism and tell them: “folks, you are acting like a bunch of condescending, arrogant, unempathetic, eugenic jerks.” For the love of all the gods, just stop talking about autistic people like we are not real people.
Let me rephrase this in polite, sorry. The current medical approach to autism is rooted in a deep objectification of autistic subjects, as our whole existence gets defined and encapsulated in terms of “deficits” and “abnormalities”, reducing our whole being to the mechanical, the molecular, the chemical, the cerebral function — as we had…no soul, no personhood of our own. As if we were things, rather than people — which is, ironically, exactly how neurotypicalism accuses us of seeing the world. It is alienating and othering to read scientific research that looks at you like you are a mysterious, inferior freak of nature whose working needs to be dissected so that your very existence can be prevented. It should be quite self-evident how offensive that is.
You can argue that any human is nothing but a bundle of chemical reactions, dominated by their nervous system and their sensory limitations, that govern their behaviour beyond their control. This is true for neurotypicals and non-neurotypicals alike, if you want to look at the world on this level. But the thing is, we normally don’t do that, because that is a deeply dehumanizing way to approach a person.
The neurodiversity movement has sometimes been misunderstood as denying the impairments that can come with being autistic. But that is an incorrect interpretation of the immense potential of the worldview of neurodiversity. The point of the neurodiversity movement is to reclaim and recenter the personhood of neurodivergent people. The fact of having impairments should not be, in my opinion, what is considered to define autism. Autism is a neurotype. Impairments can and do occur, and it is essential that we look for ways to improve our wellbeing.
But looking for ways to improve our wellbeing, as multidimensional spiritual, social, cultural, physical, emotional, and nervous subjects, is a distinct enterprise from framing our whole very existence as a deficit to be solved. These two enterprises require two entirely different paradigms — one that approaches us as real, whole people, and one that doesn’t. One that still believes in ontological hierarchies of humanity based on residual eugenics, one that doesn’t. They require two divergent approaches to the definition of being human.
I am not personally opposed a priori to looking for genetic markers of (aspects of) autism, or analyzing our microbiome, or similar analytical approaches, as I believe that it can open up some possibilities for improving our wellbeing. If there is a gene that causes me to have slower processing speed because it affects my neuronal transmission, for example, and science finds a way to fix it, I’d go for it (notice — this is a specific aspect of my autism, not a “cure for my autism”). Or, if Transmagnetic Cranial Stimulation progresses enough to target the specific areas of the brain that are causing me alexythymia, I may sign up to get that TMS. This is my personal opinion based on the way in which my impairments affect my life.
But I would like the research on my brain to acknowledge that I don’t need those interventions to make me a person — to make me human. I would most definitely not want the research to look for genetic markers in order to “cure autism” — a eugenist enterprise. I would like the research to address the massive socio-economic and political discrimination faced by autistic people, with the same zeal with which they currently wake up in the morning to compare my brain activity to genetically modified rats. And most of all, I would like the research to talk about us with the respect and dignity that is afforded to a human being.
Autism itself should not be diagnosed, it should be recognized. The definition of autism should be centered around the internal autistic experience, not around the neurotypical external judgement of our behaviours. It is appalling how little the scientific community listens to us, and how much of their understanding of autism is still based on offensive stereotypes.
I’ll make an example: in order to request a diagnosis, my GP has asked me to fill in a questionnaire, the “Autism Spectrum Quotient”. My answers to this questionnaire determined whether I should be referred for an assessment or not. Some of the questions in the questionnaire are simply appalling for how stereotyped they are. For example: “I am fascinated by dates”, “I would rather go to the library than to a party”, “I am fascinated by numbers”, “I don’t particularly enjoy reading fiction”, “I would rather go to the theatre than to a museum”, “I am not very good at remembering phone numbers”, “I enjoy doing things spontaneously”, “I am a good diplomat” — seriously? I don’t even know which answer they expect to be “more autistic” for some of these questions! I like fiction, theatre and I like doing things spontaneously, I love a good party if it’s the right environment, I am very good at being a diplomat in certain contexts and I couldn’t give less of a fuck about dates. Does that make me less autistic? Really?
Autistic people are put in a tragic position by being caught up between a society that doesn’t recognize their own right to exist, a scientific community that still reasons by stereotypes, a generalized lack of appropriate support, and having to deal with their own impairments, on top of it all. Try not to lose your mind. No wonder we have so many “comorbidities”. Ironically, our very natural emotional reaction to this systemic situation is redefined as pathology — alongside the other pathology of being born autistic, of course (sarcasm here — incredibly, I can use it).
The “N” in Neurodiversity Stands for “Nuance”
No progress can be made for autistic people, until the medical community listens to our voices. At the same time, I believe that the autistic community finds itself at an essential juncture. We are emerging for the first time from centuries of invisibility, we are growing in culture, advocacy, self-organization, identity. As we fight back against a medical paradigm that has defined our lives as “deficits” for centuries, it is natural to tend to go in the opposite direction.
There are proponents of the neurodiversity theory that declare that autism is only a disability because of social discrimination, and that the research should merely focus on the social, and drop the biological entirely. I have personally been “accused” of “internalized ableism” for expressing how I felt about the limitations that autism creates in my life. This is not a fruitful approach either, in my opinion. I personally refuse to have my legitimate desire to improve my wellbeing and quality of life, being reframed as a result of me being a “dupe of the system” of some kind. I hope that the neurodiversity movement remains multidimensional, and able to hold the nuances of our struggle and the diversity of our neurotype.
There is an issue of privilege that needs to be taken into account within the autistic community — “if you’ve met one autistic person, you’ve met one autistic person” remains true, even if that autistic person is yourself. We have varying degrees of support needs that affect our lives differently in different contexts. A lot of the advocacy is made by autistic people who have the privilege of being able to speak, to maintain relationships in a certain way, to formulate language at all, to have a certain understanding of social and political dynamics, to have a certain degree of independence in their daily activities, etc. People can be autistic and not be impaired, have some impairments that they happily live with, and have impairments that severely limit their everyday life — such as the ability to go out without feeling sensory overload, for example. None of these are mutually exclusive in the definition of the autistic identity itself, and in fact it is essential that we are able to hold that variety in our definitions.
The neurodiversity approach is, in my opinion, the only social theory that has the beautiful capacity to hold space for the full diversity of humanity. That is, as it intertwines with all other social theories, and in fact builds on the work that has been done by the critical social theories that were born before it and that cannot be separated from it in the pursuit of equality, including the critical race movement, decolonial movement, gender theory, movements for economic justice, critical disability theory, and more. These theories and, most importantly, struggles have paved the way for the critique of modern science that the autistic community is engaging with.
My wish is for this critique to be able to reshape the scientific autistic subjectivity in a multidimensional way that takes into account the entirety of our existence, and the entirety of our disability. We are faced with the task of not only claiming equality in this society, but to reshape the very boundaries of social norms, as to make inclusivity the norm rather than the exception — to decenter “normality” as a marker of personhood. At the same time, we have the opportunity to reclaim the pragmatic potential of modern science, not to keep us in a subordinate position as deficient biological subjects, but to serve our multidimensional needs with the dignity that it has denied to us so far. So, am I person or am I my brain? I am both, and I wish this didn’t have to be a dichotomy.
Thanks for reading! Leave a comment if you like. If you disagree with any aspect of what I wrote, I am happy to hear from you, but please be mindful of keeping the tone of the discussion respectful.
