Who "Neurodiversity" Left Behind

I’m off for the rest of the week to celebrate the Christmas holiday, barring any world-shaking events I feel the need to comment on. Then next Monday I’ll have my annual year-end wrap-up post, then off again until the week of the sixth, when we’ll be back on a regular schedule.

Recently I received an email of a type of that I’ve gotten occasionally in the past several years, from a mother of a severely autistic adult. Her intent was familiar: frustration with autism discourse and disability rhetoric generally, along with gratitude that someone would say what she has always wanted to say but which she felt bullied out of saying. She finds the autism disability community to be self-righteous, totally out of touch with her son and his practical needs, shameless in shouting down anyone they don’t like, and genuinely scary, given their willingness to scream at those who disagree with them. She told me she feels like anyone who publicly criticizes them ends up on a list, and that people on that list end up shunned. I’m not sure if she meant it metaphorically or literally. But I understand where she’s coming from either way.

That’s something I’ve heard so many times, in the past several years - people who are affected by disability, whose lives are intimately connected to disability, yet who feel that they have no right to have an opinion because standpoint theory has been so ruthlessly enforced in the disability discourse. When I was a guest on a podcast hosted by three women with adult schizophrenic children, they told me that they were glad I was there to say the things they couldn’t say, not having a psychotic disorder themselves. It broke my heart. They had spent their best years fighting to keep their severely disturbed children alive and out of long-term institutions; they had sacrificed so much. Of course they have the right to share their opinions about schizophrenia or mental health or disability or whatever else they would like to. And so do you and everyone else in the world because that is what democracy is. I am entitled to speak on “marginalized identities” to which I do not belong because I am a part of mankind. Homo sum. Fuck you.

A lot of people share my great discontent with the disability activist community and how they have fundamentally changed what it means to be disabled, what a disorder is, and whether autism in particular is a disease or disorder at all.¹ But they’re scared by the rhetorical ferocity of the activist crowd, and I don’t blame them. And there are clear consequences. Prior to 2000 or so, a majority of what was written about autism directly concerned severe autism², but in the present era, that prevalence has shrunk dramatically, in favor of books and essays and podcasts and YouTubes and TikToks and more that front people whose autism has never prevented them from flourishing in the most elite spaces in American meritocracy. (I am working on quantifying this change for the book I’m writing on these and related issues.) The public face of autism has changed from the undoubtedly problematic portrayal of the disorder in the 1989 film Rain Man, a character who was lovable but who was also obviously severely disabled, to contemporary characters whose autism does not result in any particular difficulties at all; they are, instead, simply quirky and adorable and wise and sensitive and lacking in any problems that do not stem from the world’s awful treatment of people with autism. If you’re someone who has struggled to care for a person whose autism has made them unable to communicate verbally, reliant on diapers even into adulthood, incapable of feeding or bathing themselves, maybe inclined to repetitively injure themselves…. Well. Perhaps the change in focus does not seem especially salutary.

This, of course, is the gentrification of disability. Autism was a neighborhood that was unfairly seen as hardscrabble and rundown by the “neurotypical” world. But a group of autistic people with an unusual amount of privilege decided that it was a great spot to set up shop, they fancied it up, they made more and more of it in their own image, and before you know it, they owned the place. In doing so they drove the original residents out of town.

In 1998 the sociologist Judith Singer introduced the concept of “neurodiversity.” I think it’s worth looking at her original essay. Here’s a famous passage.

For me, the key significance of the “Autistic Spectrum” lies in its call for and anticipation of a politics of Neurological Diversity, or “Neurodiversity”. The “Neurologically Different” represent a new addition to the familiar political categories of class / gender / race and will augment the insights of the social model of disability. The rise of Neurodiversity takes post-modern fragmentation one step further.

Ah. Post-modern fragmentation, you say. No doubt a concept of immense use to harried and broke parents who are struggling to keep a severely autistic child out of some sort of group home, while continuing to raise their other children and pay the mortgage. You might ask whether the average autistic person actually wants to be part of a “new addition to the familiar political categories of class/gender/race,” whether that’s something they actually think will benefit them, whether it’s something they agree with. The disability activists always speak ex cathedra, like they’re reading the results of a vote taken by everyone they claim to speak for, but of course they don’t and aren’t. Does the average autistic person have any particular attachment to the social model of disability? Does it matter that standpoint theory is incoherent and empty when it comes to people like the nonverbal and autistic, who literally cannot speak for themselves, and thus are permanently excluded from your “us”? These all seem like fair, sensible questions, and thanks to my recent work in this area, I can tell you that there a lot of people - a lot of progressive people, a lot of people with disabilities - who feel very intensely lonely and silenced because those questions are unpalatable to a small group of highly vindictive people. The necessary work before us is to rebuild an argumentative space where skeptics of the disability rights movement don’t fear being harassed by people who call themselves activists.

What’s particularly frustrating is that there’s so little in the way of rebuttal of what I’m saying. I don’t mean convincing rebuttals, I mean attempted rebuttals, any rebuttal. I’ve spent a lot of time looking for the best argument against my own position, and yet there’s little written engagement with the most obvious questions - why has severe autism become so much less prominent in discussions and depictions of the disorder? Why would having a neurodevelopmental disorder imply a particular political orientation or endorsement of a particular school of academic politics? Doesn’t insisting that autism is not an illness inevitably hurt people whose autism most certainly does them harm? There’s some, and I’m addressing it, but less than you might assume. And the reality is that shouting and standpoint theory does the work for them; a lot of these activists seem to think that they don’t need to rebut any of these critiques because no one has the right to voice them. After all, some would suggest that standpoint theory undermines my right to criticize any of it, including standpoint theory itself; I can’t question standpoint theory because I have the wrong standpoint. On the other hand, perhaps I have an ironic ace up my sleeve. After all, many of these activists argue for a profoundly capacious definition of the term “neurodiversity,” a definition that includes people with psychotic disorders like mine - meaning that, if they’re right, I do have the right to debate neurodiversity. When they say “nothing about us without us,” I can tell them that according to their own ideology, I am us. Convenient.

And debate it I will. This is necessary work. Those with autism who are nonverbal cannot speak for themselves, so we should work to have a diverse collection of opinions on autism in the public square. And those who look at magazine covers that assert that autism is a superpower, blanketed with pictures of “neurodiverse” CEOs, and think of their loved ones who struggle to live under the debilitations of severe autism, and feel exhausted - those people deserve a voice. We all deserve a vastly more challenging, more ideologically diverse, and yes, more inclusive autism discourse. The dominance of academics, those attached to a particularly dogmatic version of the disability rights movement, and the minimally-impaired within autism’s discursive spaces is bad for everyone. This is a fight that needs to be had, and in the next several years I intend to have it.

1. That latter part is particularly incoherent, as the same people who claim that autism is not in any way pathological also demand legal accommodation for the condition; they often will square the circle by claiming that autism is a disability but not a disorder, a concept which means precisely nothing.

2. The autism activist community fiercely rejects the idea that autism can have different levels of severity, because there’s nothing bad about autism. (You wouldn’t call someone severely Black, would you?????) This is horseshit and a reflection of the fact that the autism activist community is almost exclusively made up of the least-afflicted people with autism. You’re autistic and went to Harvard and now you have an enviable professional career and a romantic partner and house and car and life, and you think autism is not a disability? Yeah, I bet.