Autistic People as Commodities

(Commodifying people is just wrong.)

Uh Oh. I Found a Fascinating New Book.

I am currently reading “The Autism Industrial Complex”.¹ I have known for a long time that capitalism relies on complex networks and systems that have been granted the power, authority, and pretext of proprietary expertise to lock neoliberal priorities into the political theology (and yes, I do mean theology) of dominant culture. I thought I knew a lot about the myriad ways neoliberal capitalism fucks over the general public, and particularly marginalized people, for the sake of financial gain and economic power, and I was sort-of right. I do know well, but not a lot of specific facts, because most of my knowledge is high-level concepts and lived/felt experience. This book is a good reminder to me that it can sometimes feel vindicating and supportive to get familiar with the nitty-gritty objective details.

As the saying goes, “The devil is in the details,” and quite often, what that really means is that when attempting to speak truth to power, proof — or at least verification or vindication — requires specific examples. I can have a vague sense of how I’ve been commodified without my consent, but to know exactly how and why that has happened, and to be reassured that I am not alone in my experience of being unconsenting fodder in a capitalist machine, I need the details — the receipts, as the common parlance du jour says. This book has the receipts. Or at least, the first chapter does; that’s as far as I’ve gotten. I must be careful to specify that I am not writing a review, or even a description, of this book right now. I just want to follow one detail, in particular, that lit up my brain when I read it: there is an important distinction between things and not-things.

The Quote That Got Me All Revved Up

I was so struck by this quote that I felt compelled to stop reading, write it down and talk about it immediately:

“it is the moment when it [autism] becomes a ‘thing’ that it becomes consumable and, therefore, amenable to commodification”²

No, You Can’t Have My Autism

Yes, I am A Person, and ‘Autistic’ is Sometimes a Noun

What struck me when I read this quote was how it dovetails seamlessly into the person-first vs. identity-first debate as it pertains to autistic people.³ I had never thought about autism as a thing before. Even when contemplating why I have a vehement preference for identity-first language, I perceived the conflict as being between autism as an attribute and autism as an inflicting condition, disease, or disorder. A condition, disease, or disorder could be said to be a thing, but it’s an intangible thing. While it can possibly be eradicated, managed, contained, or appropriated, it can’t be captured, possessed, or commodified.

The idea of autism as a thing makes clear how the language of having rather than being paves the way for this cynical transmogrification of autism from an adjective or identity into a noun — a demon, separate from the person who is supposedly held hostage by it. Since this is a lie, and it’s not really possible to separate autism from the person, commodification requires that the narrative be one of a need for separation — for exorcism. There’s no way to sell the service of exorcism if there’s no demon to vanquish.

To state this in terms of how the debate is commonly framed: I do not have autism. My autism is not a commodity that can be made use of, taken from me, controlled, managed, or even analyzed by anyone else, because I am an Autistic (when I use the word “analyzed” here, I do not mean that a trained professional cannot detect my autism; rather, I mean that an analysis of my autism, without my consent and outside the context of my personality as a whole is utterly pointless). There is nothing about my autism that can be extracted from who I am anymore than you could extract my height, my gender, my first language, or my race. Those things are all part of me, and even if some of them can shift over time, or be changed, covered up, disguised or denied, they still cannot be extracted from me, and neither can my autism. If capitalist interests want to co-opt my autism for their purposes, the only way to do that without appearing nefarious is to claim that I am being rescued from, i.e., “cured of” my autism. It has to be separated from me. That illusion requires person-first language, no matter how much I may declare that it’s identity-first language that is in my best interest. The truth is, if autism is a thing, I am a thing. If “autism” is a noun, so is “Autistic.”

Person-first language enables the commodification of autism, and therefore, of Autistics, because it supports the illusion that autism can be separated from the person.

An F-You Letter to the Autism Industrial Complex (AIC) and it’s Neoliberal Overlords

This is what I would, if I could, say to all those powerful capitalists who make a living off of the AIC:

If you insist on describing any autistic person as someone with autism even after they’ve told you that is not their preference, you are disrespecting all autistic people. Those of us who prefer identity-first language have told you how we experience ourselves; what descriptions resonate with the ways we know ourselves to be, and nobody else has the right to tell us they know better than we do how to refer to ourselves and our lived experience. Disrespecting the preference of any autistic person is a clear signal that you do not respect the agency of autistic people to decide for themselves how they should be described.

More specifically, I am an Autistic. Also, I have curly hair. I will still be me if I straighten my hair or shave my head. That is not true of my autism. My autism is mine in the same way that my mind is mine, not in the way that my hair is mine. I can have curly hair, or a house where I live, or an aversion to lima beans, but I can’t have autism any more than I could have a different birth date, or race, or country of origin; I could be dishonest, in denial, or mistaken about being autistic, or the ethnicity of my ancestors. I could pretend I’m from somewhere other than where I am from, but I was born when and where I was born, in the ancestral lineage that is mine, and no amount of claiming that is not so will change the truth of it.

My autism is not a thing you can extract, any more than the emperor’s bare skin is actually expensive, regal clothing sold to him by tailors rather than grifters. I am Autistic, and that is immutable from since before I was born. You think you can take it away from me, but you can’t.

You have successfully marketed a program of fear, humiliation, demonization, and stigma aimed at defenseless children, and convinced their confused, exhausted, frightened parents that you and only you can cure their autistic child. What you do is child abuse. You are the reason shock treatment as punishment is still legal to use on disabled children. It is a grift and it is a lie. Because of the cultural oppression and stigma you have engineered, countless people — many of them children — die or are murdered, suffer in institutions, or are subjected to years of archaic, torturous “treatment” that is designed not to help its subjects, but to break them down and coerce them into acting “normal.” There’s a reason you don’t sell your “treatment” to adults; nobody who has the authority to say “NO!” would subject themselves to it. You offer the false hope of “normal” to panicked parents in exchange for the riches you think you deserve for providing this promise of normalcy. You trade in misery and you get rich from it. I refuse to consent. You will not get rich off of me.

Stop trying to convince me that it is my responsibility to conform to your conveniently constructed notions of what a “normal” person is. We are different. Leave it at that, and stop trying to profit off of the oppression and stigma Autistics contend with on a daily basis because of your insistence on claiming we are broken and only you can fix us (for a price). If you cared as much as you pretend to, you would pour money into resources for ensuring the well-being of Autistics of all ages, genders, races and economic classes, and support for caregivers, instead of trying to change autistic people into something we are not. Stop trying to “cure” us, and stop torturing us into submission when it becomes apparent that there is no “cure.”

Rant Done. Is it Reasonable?

That is what I would say, and if what I wish I could say is true, then what makes the AIC possible? If I, and the raft of activists and Critical Autism Studies (CAS) scholars I learned it from, are correct — that autism is not a thing that can be commodified — how is it possible for the AIC to commodify Autistics? I haven’t read enough of the book yet to know what the scholars say, but I’m on a tear so I am going to take a wild guess that what makes it possible is a mix of oppressive cultural norms, cultural permission granted because of implicit bias caused by those norms, and the culturally normalized paradigm that encourages the commodification of anything that can have profit squeezed out of it (neoliberalism). Similar to how racism is a brutal reality with very real consequences even though race is purely a construct, thing-y autism as a cultural construct has allowed commodification even though autism is not really a thing.

And Back to Identity vs. Person

I firmly believe that the intention to commodify is what is behind mainstream/institutional insistence on using person-first language, in spite of Autistic activists and CAS scholars declaring for years now that identity-first language is preferential — on a systemic level — to person-first language. The existence of many people with autism who either prefer or allow person-first language notwithstanding, as a liberatory movement, we must change the assumption that people can be separated from their autism, and that causing that separation is a noble goal. For anybody who wants to be divorced from their autism, more power to them if they believe that is possible; it is not my place to claim otherwise for them (what a surprise: we are not a monolith). For myself, and for a whole lot of other Autistics, we know it is not possible for our autism to be extracted from our being, nor is it desirable, and we are excruciatingly aware of how the AIC’s intention of commodifying our being has further stigmatized and marginalized us.

I would not be me if I weren’t Autistic. I’m not a believer in the “perfect just the way I am” model of thinking. There are plenty of ways I could prune, grow, change, that would be of benefit to me and possibly also everyone who interacts with me. None of those ways involve the virtually lobotomizing process of forcing me to extract parts of me that are defined as autistic from the parts of me that are not. I — and all autistic people — deserve to be perceived as whole human beings. We are deserving of the dignity, respect and agency that are considered the right of allistic people. Give us that, do your best to support us, or at the very least, leave us the fuck alone. Stop commodifying us. We are not yours for the taking.

MILCK is fierce! I wish I was as bold and fierce as MILCK. Since I’m not, I will let her close out this post with her song “I Don’t Belong To You,” because its tone is exactly how I hope this whole post comes across:

1. Broderick, Alicia A. (2022). The Autism Industrial Complex: How Branding, Marketing, and Capital Investment Turned Autism into Big Business, Myers Education Press.

2. Mallett, R., & Runswick-Cole, K. (2016). The commodification of autism: What’s at stake? In K. Runswick-Cole, R. Mallett, & S. Timimi (Eds.), Re-thinking autism: Diagnosis, identity and equality (pp. 110–131). Jessica Kingsley Publishers, as cited in Broderick (2022).

3. Most self-advocating autistic people (including myself) prefer identity-first to person-first language. That is, we want to be referred to as an “autistic person” or simply an “Autistic” rather than as a “person with autism.” It is mostly the parents and caregivers of autistic people who tend to prefer person-first language. If you’re not familiar with the person-first vs. identity-first debate, The Autistic Self-Advocacy Network has a great explanation of it, including why the movement as a whole increasingly prefers identity-first language as the default. It is vitally important to respect the wishes of each individual regarding how they want to be described in relation to their autism. If someone describes themselves as a person with, or who has, autism, please respect their wishes and refer to them that way. However, when referring to autistic people as a group, or when the preferences of an individual can’t be known, identity-first language is the most respectful choice.