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25 Jul 2024, 8:47 pm

Shannon Des Roches Rosa for Thinking Persons Guide to Autism

Quote:
If autistic people like my teenage son make you uneasy, you’re wrong—but it may not entirely be your fault. Our media conditions its audiences to fear and pity people with disabilities. And it’s not just sensationalistic, clickbait media outlets that impugn the rights and basic humanity of autistic people. Respected, progressive publications and writers can be just as reactionary. But because we tend to trust such “thought leaders” as both intellectually rigorous and socially fair, their ableism often goes unchecked, and so can be far more dangerous than that of their unapologetically prejudiced counterparts.

IT'S NOT UNCOMMON TO FIND AND IRRATIONAL FEAR OF DISABILITY AMONG NONDISABLED INDIVIDUALS. THAT UNEASE WHICH WE REFER TO AS DISABILITY ANXIETY, STEMS FROM A LACK OF UNDERSTANDING OF WHAT DISABILITY MEANS.

John Marshall, Kashboo Chabria, et al..

Neurodiversity for Dummies

This priming of progressive readers and listeners, this permission to view autistic people as subhuman, explains a lot: Why all those big-hearted celebrities don’t know any better than to support Autism Speaks and its stigmatizing campaigns, rather than desperately-needed supports and services for the autistic people who are already here. Why journalists openly scoff at neurodiversity activists, and accuse them of not understanding the plight of the “truly” disabled. Why readers share stories about parents murdering their autistic children that present these crimes as “understandable,” given what burdens autistic people are.

Sometimes the problem is the type of detached intellectualizing that autistic people themselves are so often accused of. When journalist Malcolm Gladwell argues that autistic people are more susceptible to “thresholds of violence” and therefore more likely than the average kid to shoot up a school, he may have been fascinated by a provocative sociology theory. But he made his case using a single autistic anecdote, despite the fact that his theory was contrary to the evidence of autism and violence—autistic kids and adults, like other people with disabilities, are far more likely to be victims of violence than to commit violence. And articles like Gladwell’s have real-world consequences: every time the media links autism to mass violence, autistic people—students especially—get treated like ticking time bombs.

Then there’s the media’s unquestioning acceptance of negative autism narratives. RadioLab, that audio beacon for curious geeks, chose to empathize with a parent who tried to murder her high-support autistic daughter, without sufficiently reminding listeners that the autistic victim, Issy Stapleton, had the same right to live as any other human. In the same episode, hosts Jad Abumrad and Robert Krulwich talked with a young autistic man, Owen Suskind, about how easily autistic kids can be traumatized and bullied, and how difficult it can be for them to communicate that they need help, or for their families to recognize the kind of help they need. And yet they failed to explicitly recognize Issy Stapleton’s right to safety and survival, or realize the irony in allowing her to be dehumanized while decrying bullying with the next breath.

It hurts even more when journalists get praised for championing autistic people when they’re actually betraying them. Culture and psychology writer Andrew Solomon is eloquently critical of discrimination that affects him personally (he is gay and has depression), yet reinforces chronic biases against autistic people in his award-winning book Far From the Tree. Solomon’s book does feature many autistic voices, but it presents autistic subjects who aren’t able to speak for themselves and who have high support needs as burdens. He even allowed parents and caregivers to publicize their autistic loved ones’ most vulnerable and private moments, a potentially degrading exercise, in the name of “honesty.”

And then there’s the ableism perpetuated by autistic people’s family members. New Yorker editor David Remnick, like me, is the parent of a high-support autistic adult. That doesn’t mean he’s obligated to be an activist, but it would be nice if he used his position and influence to help people see his daughter as a complex individual who deserves whatever level of support she requires. Instead, his magazine rarely covers autism, and when it does, it’s to feature articles (like Gladwell’s) that prejudice readers against neurodiversity. Remnick is willing, as he should be, to lend his not-insignificant platform to other notable civil rights-oriented and disenfranchised groups: He held an extended conversation with Black Lives Matter founder Alicia Garza about how a head-down approach does not serve the best interests of the Black community. Then, a few weeks afterward, he effusively thanked Caren Zucker and John Donvan for their “Story of Autism” book In A Different Key, which offers an unsympathetic portrayal of similarly outspoken autistic activist Ari Ne’eman—for daring to keep his head up.

Our progressive thought-shapers need to stop treating autism and disability as rare and tragic exceptions, instead of commonplace, both now and throughout history. Parents-to-be need to be aware that autism is a possibility they can prepare for, not a tragedy.

To make this mental shift happen, media outlets must ensure that the people who best know what autism is all about—autistic people—are always part of the conversation. I realize these conversations may be hard. We haven’t had the tools or the language to talk openly about autism for very long—it’s only been a generation since Lorna Wing opened autism diagnoses to people with a spectrum of traits and disabilities, instead of those who solely fit the “Rainman” profile, so we’re still brawling over who gets to define what autism means.

We need more honesty-without-exploitation stories about the realities of being autistic, and the realities being the parent of an autistic kid. The truth is, it’s really damn hard. Families rarely get enough education about autism, and much of the information they do get is about PTSD-inducing, unrealistic techniques for turning autistic kids into non-autistic kids—which usually mean misery for everyone involved.

We also need more truthful coverage of what neurodiversity means: simply that it’s OK to have a brain that works however it works, and that it should not be shameful to need whatever support your brain needs. We need to call out stories that characterize neurodiversity a as zero-sum game where “quirky” fakers want to take all the resources away from autistic people who need help with day-to-day living. In fact, autistic-led organizations like the Autistic Self Advocacy Network advocate on behalf of autistic people with diverse support needs.

Anti-neurodiversity media perspectives make it difficult for autistic people who have “passing” skills to get the accommodations they require. Reporters have been fascinated by tales of late-diagnosed autistic author John Elder Robison making fire-shooting guitars for KISS’s Ace Frehley, but they ignore or gloss over his disabling typically autistic traits, like corrosive anxiety. The idea that autistic people with fewer support needs are not “disabled enough” to need any supports at all is a big part of autistic adults’ abysmal unemployment rates and skyrocketing stress levels. It’s not surprising that autistic people in general have a higher-than-average suicide rate, as well as elevated tendencies for co-occurring mental and medical health issues.

If media outlets want to get autism and neurodiversity coverage right, then we need to move our focus away from horror stories and pity parties, and onto shared humanity, rights, social contracts, and centering the perspectives of autistic people. Despite what the media would have you believe, that’s the truly damaging failure: not lack of empathy from autistic people, but lack of empathy for them.


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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman