rejecting truce in the autism wars

Spectrum News just published a call for truce in the “autism wars.” That means we’re making progress, and we should push on to victory. A truce would be like voting for neoliberal Democrats. What’s the point, and can’t we do better?

The article starts by summarizing #puppetgate. Apparently we made them regret it. Great success!

The backlash took Oates by surprise. He had written the script based on his years of experience as a care worker for a severely autistic child. He had also sought input from people on the spectrum, and the parents of the child who had inspired the story. In his view, supporting parents and encouraging conversation is the best way to support severely autistic children. As for the puppet, it had seemed more sensitive to him to use a “creative medium” than to ask an actor to mimic the condition. “I am genuinely sorry for the hurt that anyone felt,” he told Spectrum. “I’m particularly sorry if this play added to a divide between autistic people and neurotypical people with severely autistic children.”

Oates, and the entire Spectrum News piece, are based on the false premise that neurodiversity movement is only for people that are good at spoken language. It’s true that that’s how Judy Singer characterized the idea, as something to help people with “Asperger Syndrome.” In the meantime, it turns out that the neurodiversity movement also has “severely autistic” advocates. For example:

 

Frank Stephens’ testimony on Down Syndrome is also relevant:

Serious things with lifelong consequences are at stake, like the kinds of childhoods people have. Alisa Opar’s commentary in Spectrum News misses the point with tone-policing: the sides are saying not-nice things about each other! Can you imagine?

This fight between the two camps has at times gotten ugly, with the former camp calling neurodiversity advocates privileged and naïve, and the latter saying the parents are ‘able-ist’ and are failing their autistic children. Over the past two decades, as the spectrum has broadened to include those with milder traits, this fight has flared into an all-out war that plays out on social media, on the internet and at community meetings.

Both sides make good points, but the animosity does only harm, say many experts who are frustrated by the situation.

It’s true that I’m relatively privileged, but this is exactly the same as a white person telling me not to express opinions on race because I’m “not black enough.”

It’s telling that, when the Autism Parents say something about us, it’s reported as such. When we say something about Autism Parents, it gets scare-quotes. Putting ableism in scare quotes is a refusal to take the disability rights movement seriously. It’s true that we say the Autism Parents we argue with are failing their children. Opar isn’t interested in whether we’re right, but chooses to emphasize the social faux pas of criticizing someone’s parenting. Style over substance. The autistic people are being rude! Can’t the Aspies just stay out of this? It was so much nicer when we controlled the entire conversation.

This is exactly like white people getting more upset about calling anyone, anywhere racist than they are about racism itself. If we’re right, children are being harmed in large numbers. Won’t somebody think of the children?

Next are the opinions of Manual Casanova, expert in collecting our brains:

“I see many positives in the neurodiversity movement, including fighting for what parents of autistic children want: to get society’s acceptance of them and to get accommodations for them,” says Manuel Casanova, professor of biomedical sciences at the University of South Carolina. But the loudest voices in the neurodiversity camp are causing an “upheaval” by insisting on a strict interpretation of autism and what autistic people need, he says.

“They see the world in black and white, and either you are with them or against them,” Casanova says. And if these opinions ultimately sway public opinion, “it might end up hurting research, and hurting the delivery of services to those people who most need them.”

Actually, society’s acceptance of autism is what we’re arguing about. The point of contention is whether Autism Parents’ efforts are counterproductive to that goal.

He’s basically making insinuations based on symptom lists. We can’t think right, as a symptom of autism. Too “black and white.” You know what else causes black and white thinking? Trauma, which happens to autistic people at greater rates. You know who else has problems with black and white thinking? Most people, according to Buddhism. “Dualistic thinking” is something everyone should work on.

Notice that he doesn’t state what our “strict interpretation” of autism actually is, nor what we think autistic people’s needs are. We’re just wrong because, y’know, he thinks it’s too black and white.

If we shut down certain research and reallocate funds, that’s a good thing. That’s our goal, to shift money from collecting our dead bodies into providing services. Casanova never has to defend the assumption that research is good, noble, helpful to autistic people, because Spectrum News is already on his side.

After summarizing some neurodiversity movement history, Opar again demonstrates tone-deafness by conflating Neurotribes, a respectful book, and The Good Doctor, stereotypes to entertain normal people.

Some of these autistic adults amplified the neurodiversity movement, calling for greater recognition of the differences between autistic and neurotypical people. Over the past decade, books such as Steve Silberman’s “NeuroTribes” and TV shows such as “The Good Doctor” have helped raise awareness of those differences. Autistic people have also become more open about their diagnosis, Ne’eman says: “When I first got started, it was a very radical, revolutionary thing to be openly autistic.” But over the past year, for example, autistic Swedish teenager Greta Thunberg has inspired students all over the world to fight against government inaction on climate change. “Asperger is not a disease, it’s a gift,” Thunberg wrote on Facebook in February.

Yes, let’s talk about Greta Thunberg:

Thunberg’s parents say their daughter, once painfully introverted, was always a bit different to other children. Four years ago, she was diagnosed with Asperger’s, on the autism spectrum, which helps explain her remorseless focus on the core issue of climate change after overcoming depression. “Being different is a gift,” she told Nick Robinson when interviewed on Radio 4’s Today programme. “It makes me see things from outside the box. I don’t easily fall for lies, I can see through things. If I would’ve been like everyone else, I wouldn’t have started this school strike for instance.”

She admitted her passion was partly down to viewing the world in stark terms. The result of her simplistic approach, fuelled by her condition, is that she has presented this issue with more clarity and competence than almost any adult activist or politician in recent years. And there is something rather beautiful in hearing this teenager demonstrate by her actions how society is stronger when it embraces difference – a message that seems so pertinent to our troubled age. Indeed, this aspect of her stance as a now-public figure on the autism spectrum is arguably as important as her bold stand on climate change, given many prevailing attitudes.

Quite different than the way Casanova looks at it. While Casanova says neurodiversity people are a threat to the provision of services, the article itself goes on to contradict that:

Many autistic self-advocates interviewed for this story noted that how well they function varies day to day, whereas the support they need remains constant. As a result of the change to the criteria, an autistic person in the ‘low severity’ category no longer risks losing services.

“We instated language that the scale is not to be used for eligibility for, or provision of, services,” Steven Kapp, an autistic research fellow in autism and neurodiversity at the University of Exeter in the United Kingdom, wrote via direct messaging.

This is an extremely telling anecdote:

Still, even small changes can sometimes draw fire.

After scientific presentations at last year’s meeting of the International Society for Autism Research (INSAR), for example, attendees were asked to respond to presentations not with applause but with ‘flappause’ — by silently moving their hands in the air. The gesture resembles the hand-flapping some autistic people find calming and is gentler than loud clapping for anyone with sensory sensitivities.

The request caused consternation among some scientists, who make up the bulk of the meeting’s attendees. They noted that the volume of applause helps them evaluate their peers’ response to a scientific presentation. This year, the conference organizers plan to ask audience members to respond in whichever way they prefer.

It’s even more telling that, in the original, the phrase “consternation among some scientists” links to this article by Bryna Siegel, which lets you know it’s on the side of dickishness by using the phrase “political correctness.” Siegel is even against ADA accommodations for wheelchairs, clearly not our friend:

The neurodiverse are to be acknowledged for what they can do, and given support for what they can’t do (like providing headphones or earplugs), but it is a bridge too far to ask 99% of those at INSAR to flap and not clap as an accommodation to the perhaps .1% in attendance who might be adverse to the sound of clapping.

We are all, to some extent, neurodiverse, and I hope can agree that individuals with extreme variants that confer maladaptation should be accommodated—but our method for accommodation is inside out when we all flap so a very few don’t have to worry about clapping. This is political correctness run aground. Ethically, it is like bankrupting small businesses by requiring long, low-grade wheelchair ramps rather than just helping the one or two customers per week in a wheelchair to come through the door.

Isn’t it interesting how the neurodiversity comes from feminism, and is generally leftist, and the other team is a bunch of Republicans who like eugenics?

The clapping vs. flapping thing does speak volumes about values and priorities. Surely scientists have ways of gauging interest in ideas than making judgments about applause intensity, subjectively. They’re there, officially, to help autistic people because they care about our wellbeing. But apparently they’re outraged at being asked to refrain from an arbitrary ritual. Autistic people have to go through life with noise-cancelling headphones everywhere in public, even the autism meeting, because fuck them, there’s more of us.

Note the implicit assumption that autism researchers themselves aren’t autistic.

Casanova gets another quote about the difference vs. disorder issue:

Supporters of the NCSA and others argue that the ‘difference’ from neurotypicals looks vastly different across the spectrum and cannot be so easily recapitulated. For some autistic people, for example, repetitive behaviors may serve to calm them or offer a means to express great discomfort, or even great joy — and need only acceptance, not treatment. But that’s not always the case, Casanova says. “It’s not a blessing to have head-banging, eye-gouging or self-biting; those have serious side effects, including retinal detachment, cauliflower ears, they can get brain trauma, contusions,” he says. “Those people need to be treated.”

The difference is that Casanova believes those behaviors measure the severity of autism rather than the severity of stress. Life is less stressful when you can talk, so “higher-functioning” people will, on balance, have less harmful stims.

Today at work, I had a meeting about how to respond to the subtext of an angry customer’s questions. I had constructive suggestions. Since I’m paid for my social skills, I’m pretty “high-functioning.” Middle school was waaaaaay more stressful. At that time, I used to pick the skin off my fingertips. During the worst period of my marriage, I had a meltdown and broke my hand, requiring two surgeries. When I couldn’t take hours and hours of leaf blowers and lawn mowers right outside my apartment, I hit my head. This morning was more chill, so I went for a walk on the beach and did tai chi there, to get my stim on. The Aspie privilege Autism Parents are attacking me for is the reason I’m “not like your child.”

Really, it’s a simple matter of correlation not equaling causation. How you’re treated co-varies with “autism severity.” Third variable. Research methods 101.

So it seems that the parents whose children are most stressed out are the ones at war with the neurodiversity movement. Could those facts also be related? The situation looks quite different when you attribute self-injury to stress instead of autism. Who’s more trustworthy? Casanova or people who know what it’s like to be autistic?

They quote some autistic people who agree with them:

Thomas Clements, a mildly autistic man whose brother is severely autistic, says he is dismayed by what he sees as neurodiversity advocates casting autism as a benign neurological quirk. “It denies the very medical nature of autism and the need for research into ways of alleviating the most distressing symptoms of the condition,” he says. Benjamin Alexander, a nonverbal autistic man who graduated from Tulane University in New Orleans, Louisiana, in 2018, goes even further: “Autism is a living hell,” he wrote in an email. “I don’t want to be accepted for the way I am; I want to be cured just like a cancer patient wants to be free of disease.”

Yes, but what would a “cure” even look like? At any rate, accepting that you’re going to be autistic for your whole life is probably healthier than wanting to be something else. It doesn’t hurt or anything, sitting in a quiet room by yourself and being autistic. The problems involve other people, and those problems need to be solved.

Baron-Cohen chimes in:

Studying autism’s biology might help explain how autistic people differ from one another, Baron-Cohen says. There might be subtle differences between, say, children who go on to develop epilepsy and those who do not, or those who are slow to develop language but then catch up versus those who stay nonverbal. Defining these subtypes of autism — and their corresponding needs for support and accommodation — could help ease the conflicts between parents and self-advocates, he says. Ideally, “we’ll be able to target different kinds of interventions or support to different subgroups on the spectrum.”

In other words, wasn’t it so much nicer when Asperger Syndrome was a separate diagnostic category? What kind of interventions did he have in mind, that you’d need genetic test results for? Ultimately, you learn someone’s needs by devoting love and attention to them. Autistic people can live good lives without all this genetic knowledge, today. The obstacles to that aren’t a lack of scientific knowledge. The obstacles are more like, the scientists can’t just abstain from clapping in case it hurts someone’s ears.

Baron-Cohen says he would like to see a survey that assesses how pervasive the neurodiversity view is within the autism community. “We don’t know what proportion of the autism community is pro- or anti- neurodiversity,” he says. “When you see criticism on Twitter, for example, you don’t know if it’s just a small number of individuals generating all of the buzz about neurodiversity.” A survey might clarify which people take certain stances and why — an important step toward reconciliation.

Fair enough, but keep in mind that MLK wasn’t popular among white people OR black people, when he was alive:

King had taken a risk with public opinion. A Harris poll on May 22, 1967, indicated that 25 percent of African Americans supported his stand, with 34 percent believing his campaign would hurt the civil rights movement.

Opar concludes:

Any kind of truce is likely to require both sides to take a perspective that encompasses all of the spectrum — where the fight is for the happiness and well-being of all autistic people rather than over who is right.

Oates, the playwright, isn’t sure if he will ever stage “All in a Row” again. But he has another suggestion: “My aim and great wish was to help these parents and therefore their children,” he says about the play. “If there was a way for those autistic voices to turn their outrage into advice for the parents, I’d love that.”

In other words, the neurodiversity movement is being accused of arguing in bad faith and having nothing constructive to say.

Of course Oates is unaware of books like The Real Experts, which provide exactly the advice he’s asking for.

It’s also very telling that he says “help these parents and therefore their children.” Again, that’s what we’re arguing about. It’s more convenient for parents if kids suppress their stims, act normal, etc. That’s not always what’s best for the child.

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