does the neurodiversity movement threaten support for autistic people?

Bonnie Evans has published a book called The Metamorphosis of Autism, which I haven’t read. Today, she published The autism paradox, a summary in Aeon. This is where she’s coming from:

I never set out to write about autism. My interest in the history of psychology and the human sciences directed me towards this subject and compelled me to reflect on the meaning of autism and its changes over time. It was whilst searching through back copies of child psychology journals, and examining case studies of children admitted to institutional care from the 1930s to the 1970s, during my PhD research, that I realised the importance of autism, as a diagnostic category and a descriptive concept, to shaping theories of child development in Britain and the USA, and now I am totally hooked on the topic. Autism has been central to child psychology since its establishment as a discipline in the early 20th century, yet the story is not always told this way.

I looked that up after reading the first paragraph of the Aeon piece and intuiting that she probably wasn’t autistic:

In 1991, Donna Williams, a little-known Australian writer, released her memoir Nobody Nowhere: The Remarkable Autobiography of an Autistic Girl. The book sold astonishingly well and became an international hit, spending 15 weeks on The New York Times bestseller list. Williams recalled her frustration that ‘people were forever saying that I had no friends’, when this didn’t bother her at all. When she retreated from the outside world, she said, it was not because she didn’t understand words (a common misconception), but because she simply couldn’t relate to them, which forced her to ‘shut down’ her senses and ‘meaning systems’. High-pitched sounds, touch and light became simply ‘intolerable’, she explained.

To me, shutting down from sensory overload and feeling disconnected from language seem like two things, not the cause of each other. The word “Asperger” doesn’t appear in the piece, so the possibility of sensory sensitivities without language delay doesn’t seem to occur to her.

After talking about the “triad of impairments” and introducing the neurodiversity movement:

These debates point to an apparent paradox in our understanding of autism: is it a disorder to be diagnosed, or an experience to be celebrated? How can autism be something that must be ‘treated’ at one level, but also praised and socially accommodated at another? Many people in the neurodiversity community say that autism is just a natural variant in the human condition. But should autistic individuals have the same legal rights as everyone else? Or are their needs different, and if so, how? If we are invited to be skeptical of clinical approaches, how can we decide who qualifies for additional support? The fundamental conundrum is that, over its troubled history, views have shifted about whether autism is part of a narrative description of an individual’s developing life, or whether it’s a measurable category that others have the right to count, demarcate and define.

The answer to the first question is simple: other people came up with the category and said we’re bad, and then we disagreed and pointed out good things. How is that complicated?

The second question is also not difficult to answer: therapy helps with the social retardation, autism makes it easier to do things other people can’t do at work, and it’s easier if I can work from home because there’s less distracting sound and I can pace around while I work.

And then she says this: “Many people in the neurodiversity community say that autism is just a natural variant in the human condition. But should autistic individuals have the same legal rights as everyone else?” Okay, what the fuck? People are so casual and quick about dismissing my rights, including my right to existence (see flame war in comments). Let’s say that autism is NOT a natural variant in the human condition, and let’s even pretend Jenny McCarthy is right while we’re playing pretend. What does that have to do with my human rights? Like…I got a PhD just like she did, before getting diagnosed. I spend an afternoon doing some tests and now it’s not obvious I have human rights anymore. Amazing!

“Or are their needs different, and if so, how?” I think autistic people have said a lot about our needs.

“If we are invited to be skeptical of clinical approaches, how can we decide who qualifies for additional support?” Autistic people? Anyone who needs support in general?

After recounting some history, including the origin of the “autism spectrum” concept, she makes this interesting argument:

Yet autism, as both a medical condition and a political catalyst, was ultimately a phenomenal ‘success’. The diagnosis was by no means flawless, but it served a vital role in reorganising social services, and advancing the rights of individuals who needed specialised social care. By the 1990s, unique educational and social services had been established around the world, and new approaches to integrating children within mainstream education had taken hold. By the 2000s, diagnoses of autism began to skyrocket in the UK and elsewhere. A growing awareness of autism, and the establishment of the ‘spectrum’, were among the biggest factors in this ascendancy.

The diagnosis gained a foothold at the end of the 20th century not only because it ensured special educational services. It also slotted neatly into new models of social and economic liberalism in the 1980s and ’90s that aspired to dismantle systems of social welfare. Neoliberalism has arguably led to the ‘death of the social’, as the British sociologist Nikolas Rose noted in 1996, because it encouraged individuals to engage in a market for welfare products in order to boost their own advantage. In the case of autism, the diagnosis protected certain people from the mass demolition of social welfare systems in the 1980s.

It should be no surprise, then, that the most unwavering support for the autism diagnosis occurred under the UK prime minister Margaret Thatcher and the US president Ronald Reagan. It provided a kind of protection for citizens who were considered ‘impaired’ in their social function, and thus entitled to support in a way that others were not. In other words, autism as we know it today grew up as a kind of resistance to a neoliberal agenda, a tool for sheltering certain people from the growing challenges of global capitalism. And in the years since, it has become an important means of affirming identity.

She’s writing primarily about the UK, and I can’t speak to being autistic there and dealing with social services.

What’s missing from this account is the addition of Asperger syndrome to the ICD-10 in 1992 and the DSM-IV in 1994. Removing the criterion of language delay expanded the category, so the simple act of redefining autism caused the number of autistic people to skyrocket.

Maybe the UK is different, but in the US what’s at stake is precisely whether a lot of these “helpful services” are actually harmful and abusive. A lot of us don’t appreciate the “help” from ABA.

It’s absurd to make it sound like the autism label is something given to others compassionately in order to protect them from capitalism. Arguably, it’s a label given to stigmatize people who’d suck at fascism (James Damore notwithstanding).

Autism has a history. So just how far have we come in our understanding of it? In many ways, the modern neurodiversity movement is revolutionary. The fact that it is formed primarily of people who have either received a diagnosis, or who self-identify with autism, is an important and persuasive validation of its aims. When Sinclair proudly told the parents of autistic children in 1993: ‘Don’t mourn for us,’ it galvanised many who were fed up with being seen as pitiable and ‘impaired’. Since then, the movement has grown exponentially. The principle of neurodiversity is widely recognised as a legitimate model for thinking about human difference, even as researchers continue to search for ‘cures’ and treatments.

Would anybody write similar statements about feminism? The fact that it’s advocated by women is an important and persuasive validation of its aims! And the fact that we’re autistic is usually used to dismiss whatever we have to say, when the normals don’t like it. The movement obviously isn’t recognized as legitimate by the people, y’know, controlling the money and spending it on “cures.”

Intriguingly, in some ways the idea of ‘neurodiversity’ represents an extraordinary revival of psychoanalytic approaches to individual development. These methods elevated personal narratives as the only means to access human truth, and preceded psychiatric attempts to contain autism as an ‘impairment’ or ‘disorder’. Interestingly, the discussions in online forums today don’t look too different from all-out celebrations of psychoanalytic reasoning. Online dialogues about autism and gender contain echoes of psychoanalysts’ interests in the relation between sexuality and development, albeit in new and innovative forms. What we’re witnessing, it seems, is a shift away from standardising and statistical models to a more expansive appreciation of human difference. This is a fantastic idea, as long as our political and social structures can adapt to support it.

That’s a really interesting observation. I’m a neurodiversity advocate explicitly on Team Psychoanalysis, but I’m pretty sure that’s weird. Critical theory in general has a psychoanalytic thread running through it. The history is framed as psychoanalysts vs. IQ testers, so the neurodiversity movement is closer to psychoanalysis, out of the two. I don’t think “Aspies obsessed with Freud” is the image we should go for. The historical debates she’s specialized in predate the Cognitive Revolution, the Human Genome Project, fMRI, etc. “Neurodiversity” is a product of the Decade of the Brain, and “diversity” comes from biodiversity and the need to rephrase the arguments for affirmative action in the wake of Supreme Court decisions. Judy Singer’s thesis is very explicit about all the intellectual influences on her.

As we saw, the idea of ‘neurodiversity’ came about as a critique of the definition of autism that arose in the 1960s and solidified in the 1980s. However, for all its flaws, the ‘impairment’ approach was also an engine of social inclusion and a buffer against neoliberal cuts to state spending. Dismantling the impairment framework has the potential to create new problems.

…and neurodiversity advocates everywhere started banging their heads in frustration. We don’t want you to talk about us like we’re defective kthx. “Included” is not the word I’d use to describe it. She’s also talking about me as a pawn in some kind of social spending fight I’m not sure I signed up for. I mean, it’s not sounding like we share political goals concerning the things that most affect me…

The difficult political question is this: if governments don’t use scientific criteria and diagnoses to identify people with autism, how can they judge eligibility for representation or access to special services? Autism advocates have frequently clashed with parental groups and charities that persist, they say, in presenting autistic children as ‘sick’, ‘trapped’ and ‘impaired’. Meanwhile, the neurodiversity movement offers alternatives and new models of inclusion, but also pushes for political representation for a group that’s increasingly difficult to define. And in any case, no one thrives under political agendas that don’t support universal public services or a model of ‘the social’ at all. The transformation we’re witnessing now has the potential to revolutionise public perceptions, but it also risks reducing social support if the political shift isn’t carefully handled.

“Representation” is going undefined here. In what sense does government determine “eligibility for representation?”

I’m not sure how the neurodiversity movement opposes the diagnosis of autism. Autism is clearly a pattern that exists in the world. She’s trying to paint us as unscientific helpers of neoliberalism, which is gross because I’m an anarchist with a neuroscience background. If society decided to take care of everybody, no exceptions, nothing important would depend on people’s philosophizing over the definition of autism.

It’s not obvious to me that increasing acceptance of autism would reduce social support for autism. It would mean that more people understood how to reasonably accommodate us. She’s missing the very fundamental point that the neurodiversity movement disagrees about the nature and causes of our social problems. Whether or not we have “impairments,” it’s obvious to us that our problems come from discrimination and mistreatment, which are things the normal people need to work on to improve in themselves. If they treated us like humans, it’d fix a lot of things.

In May 2017, a news story broke that a group of National Health Service commissioners in south-west London were planning to cut diagnoses of autism in an attempt to modernise and streamline existing services. Many saw this as a euphemism for massive public-service cuts, and some observers unfairly attacked the neurodiversity movement for romanticising autism and criticising the legitimacy of the science. It is clear that we are walking a thin line in the fight for resources, and whether autism is seen as an ‘impairment’ or a source of value is hugely consequential in economic terms. In fact, the neurodiverse, scientific and parental communities are increasingly overcoming these problems in creative and productive ways, but they are not always so easy to conquer at the level of health and social care administration.

Note that some of the science we’re criticizing is the science that says autism requires fantastically expensive and time-consuming ABA treatments instead of parents loving their children properly (which is prevented by autism stigma). We’re disputing that we are, or must be, burdens. We get fired for reasons unrelated to job performance, making perfectly capable autistic people depend on social services. I’d bet that if we stopped discriminating against the autistic people who can work, there’d be plenty left over for the ones who can’t. That’s the point. Y’all are calling us invalids because you think you have to fire us for not making eye contact and going to the bar with you after work. Or you suck at communication so you can’t give clear instructions. Stuff like that.

Is there really an autism paradox? Or is this actually a paradox of human difference, and of what it means to delineate human types while also offering people the best opportunity to thrive. If we are to think creatively about how to identify difference without stigmatising it, it pays to think historically about how autism research got us to this point. Such history offers a rather humbling lesson: that it might very well be impossible to measure, classify and quantify an aspect of human psychology, without also muting attempts to tell the story differently.

I like Foucault as much as the next person, but I think this overstates the case and misses an important point: a lot of the science is complete garbage, researchers hating on us with no self-awareness. If we’re talking so much about our subjective experiences, it’s because so much of the science and “treatment” she’s advocating are predicated on us not having those experiences. Behaviorism is the idea that it doesn’t matter what we’re experiencing.  We’re tediously trying to establish our basic personhood. Normal people don’t understand how to empathize with somebody different from themselves, so they make all kinds of distorted misattributions.

It’s also funny that she’d understand a psychiatric label as a magic shield against neoliberalism, when the definition of a mental disorder is that it makes you suck at capitalism, which is usually considered to be bad.

It’s like this whole perspective is coming from another planet where the authorities are benevolent. This is what the social services can look like:

Cards Against Humanity is a game whose own creators describe it as, “a party game for horrible people.” The game has been extremely popular, with several official and unofficial expansion packs available. Recently, a group of behavior analysts decided to get in on the fun by making their own expansion pack. Unfortunately, the result is anything but fun. In fact, it makes light of several abusive practices that are not currently restricted by the Behavior Analyst Certification Board, the governing body for board certified behavior analysts all over the world. “Pinch the nose to release the jaw” isn’t funny when you’re on the receiving end of “feeding therapy” or having ammonia sprayed in your mouth as a punishment for noncompliance. The cards also included multiple references to physical restraint, electric shocks, and feces…

Tobey Karpel, who is not a student but is in fact a board certified behavior analyst, was explicitly credited on Dr. Kelly’s page for the cards before they were taken down. NOS Magazine reached out to Tobey Karpel about her role, but she did not respond to our inquiry. Ms. Karpel did speak to Max Sparrow, an Autistic activist and advocate. She told Mr. Sparrow that she did not write the cards, but that they were a collection of comments posted in a private Facebook group for behavior analysts. she felt she was the victim of a ”witch hunt” and that the game was meant to help professionals like herself “blow off steam.” It is worth noting that Mr. Sparrow struggles with PTSD as a result of behavior therapy he received as a child.

Originally posted in December 2016 on the popular Facebook page for Behaviorbabe, the cards had over 1100 likes and 150 comments, none of which were negative before being discovered by the Autistic community. Many ABA practitioners commented to express interest in sharing the game with their professional colleagues. The cards themselves appear to have been generated by multiple behavior analysts. This seems to indicate that “Cardgate” is not the result of a few bad actors but a cultural problem in behavior analysis.

It’s not some kind of regressive, unscientific neoliberalism to see the problem here. Further note that childhood trauma and a lack of parental mirroring cause a lot of the same problems understanding others that are subsequently blamed on autism.

It’s so bad that most people watching this video don’t understand that a child is being waterboarded on television for flipping out when his mom explains to a reporter that he was a curse put there by God to test her.

Knowing that the world is like this, autistic people never hear the end of how much we lack empathy and communication skills, how much we’re a danger to others. Now we’re, like, the second coming of Margaret Thatcher. Autism…antisocial…it makes sense, right? How will we ever have nice things if they can’t call me defective anymore?

As a historian, she should be familiar with the concept of subjugated knowledges:

On the other hand, I believe that by subjugated knowledges one should understand something else, something which in a sense is altogether different, namely, a whole set of knowledges that have been disqualified as inadequate to their task or insufficiently elaborated: naive knowledges, located low down on the hierarchy, beneath the required level of cognition or scientificity. I also believe that it is through the re-emergence of these low-ranking knowledges, these unqualified, even directly disqualified knowledges (such as that of the psychiatric patient, of the ill person, of the nurse, of the doctor–parallel and marginal as they are to the knowledge of medicine–that of the delinquent etc.), and which involve what I would call a popular knowledge (le savoir des gens) though it is far from being a general commonsense knowledge, but is on the contrary a particular, local, regional knowledge, a differential knowledge incapable of unanimity and which owes its force only to the harshness with which it is opposed by everything surrounding it–that it is through the re-appearance of this knowledge, of these local popular knowledges, these disqualified knowledges, that criticism performs its work.

That’s what the neurodiversity movement is.