Autism Digest Interview

 In The Politics of Autism, I discuss divisions and factions within the autism community.

At Autism Digest, I did an interview with Kadin McElwain:

RFK the Unifier

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He is now Trump's secretary of HHS. This week, he lied about autism research, saying that HHS has not laid off scientists.

At Scientific American, Allison Parshall talks with Helen Tager-Flusberg, an autism researcher and a professor emerita at Boston University.,who organized a coalition of scientists to push back against RFK. The Coalition of Autism Scientists now has 258 members and is still growing.

Kennedy’s approach seems to step right on that fissure in the autism community. Is there a way to prevent this rift from developing further?

I don't think I have the answer to that. It’s a big question in the community because people are looking at the agendas in very different ways. But I will say one thing. I have been really impressed, over the past couple of weeks, since beginning this coalition, with how [autistic] folks who are self-advocates have joined the coalition. I think the one thing that unifies us is a belief in the importance of scientific research. Maybe we define the scope of that science in different ways, but that’s always true. That’s something that we all hold to.

And I think we all, at this moment, believe that the direction that’s been described so far by the administration is not the way we should go. We should not be opening up the question of vaccines again. We should be very cautious about using “registries” and make sure the research that’s done is ethical and maintains the confidentiality of individuals in those databases. We all agree about that.

We also all agree that, so far, we’re not hearing from the administration that they have a very deep understanding of autism. They have failed to engage most of us, whether scientists or advocates or nonprofit organizations. None of us have been involved in these discussions. So I think we actually have a moment in time where there is some agreement, and I think it behooves the administration to think about why that is and whether they need to change their course.

RFK and Divisions in the Autism Community

In The Politics of Autism, I discuss divisions and factions within the autism community.

To the extent that the stakeholders form a “community,” it is a quarrelsome one. James Madison identified the causes of faction, including a zeal for different ideas and interests.  In autism politics, the factional disagreements are diverse and deep.    Emotions run high because the stakes are high. Few things are more frightening to parents than not knowing whether a child will ever be able to live independently, indeed to survive without them.  For people with autism, the issue involves their very identity.  

  Autism politics is like faculty politics on crystal meth.

Chelsea Cirruzzo and Lauren Gardner at Politico:

Robert F. Kennedy Jr.’s pledge to investigate autism’s “root cause” has split advocates for people with the condition: Some, like Kennedy, want to know what’s causing it, while prominent groups think his search could do more harm than good.

Kennedy’s grim depiction of the most profound cases of autism — many “will never use a toilet unassisted,” he said in April — sparked condemnation from several groups devoted to championing autistic people. They said his remarks perpetuate stigmas associated with a condition that has a broad spectrum of manifestations — and, coupled with his well-known vaccine skepticism, color any attempt by the agency he leads, the Department of Health and Human Services, to conduct further autism research.

But others who say they speak for people with severe autism were heartened that Kennedy is promising to devote HHS’s resources to help them as autism diagnosis rates continue to climb.

“America has a big problem, and we have to face up to it,” said one of them, Jill Escher, president of the National Council on Severe Autism.

...

Her organization also took issue with those, like the Disability Rights Education and Defense Fund and experts quoted in a New York Times op-ed, who said they thought Kennedy’s research plan was rooted in eugenics — the idea that science could be harnessed to prevent autistic people from being born. In a statement, the National Council on Severe Autism said it “categorically” rejected the claim.

That group and others, like the Autism Science Foundation and the Profound Autism Alliance, believe autism’s rise — the most recent Centers for Disease Control and Prevention data says 1 in 31 eight-year-old children has the condition — underscores the need to continue studying potential causes so that people can better understand risk factors and develop treatments for individuals with more severe forms of autism.

The Autism Science Foundation chose not to endorse the statement of its peer groups condemning Kennedy, President Alison Singer told POLITICO, because “there was a focus in that letter that we shouldn’t be focusing science on prevention, and we believe strongly that we should.”

...

Representatives of the Autism Society of America, the Autistic Self Advocacy Network, and Autism Speaks said their organizations have yet to get a meeting with Kennedy or other HHS officials.

Autism and the Mischiefs of Faction

In The Politics of Autism, I discuss divisions and factions within the autism community.

To the extent that the stakeholders form a “community,” it is a quarrelsome one. James Madison identified the causes of faction, including a zeal for different ideas and interests.  In autism politics, the factional disagreements are diverse and deep.    Emotions run high because the stakes are high. Few things are more frightening to parents than not knowing whether a child will ever be able to live independently, indeed to survive without them.  For people with autism, the issue involves their very identity.  

  Autism politics is like faculty politics on crystal meth.

Laura T. Coffey at Today:

“There’s this tragedy narrative out there implying that autism is a fate worse than death — when it simply is not,” said Amanda Seigler, 39, an autistic mom of autistic children who serves as an administrator of a Facebook group called Autism Inclusivity, which has more than 70,000 members.

“There are too many ‘martyr parent’ groups out there — groups where parents use their children for sympathy,” Seigler continued. “They say, ‘Oh, poor me, my child had a meltdown today.’

...

“I feel very strongly that the complaints by mildly affected autistic adults that parents are violating their kids’ privacy by writing about them represent the most insidious form of censorship,” said Amy Lutz, a Pennsylvania author, mom of a 22-year-old severely autistic son and vice president of the National Council on Severe Autism. “Severely autistic individuals don’t have the capacity to consent, therefore parents are forbidden to speak about them, therefore the only voice the public is supposed to hear is that of autistic adults who claim to speak for the entire spectrum.”

...

John Elder Robison is an autism expert who feels empathy for all the autism factions who spar on the internet. A best-selling author of memoirs about his own autism diagnosis at age 40 and a leader of neurodiversity initiatives for universities and U.S. government committees, Robison is also the son of an autistic father and the father of a 31-year-old autistic son.

In a recent Psychology Today essay with the headline “Your Autistic Child Is Perfect and May Need Help,” Robison addressed the autism wars being waged online.

“In the autism community, we often say, ‘Nothing about us without us,’ meaning any conversation about autistic people should be led by autistic people,” Robison wrote. “It makes sense, but it’s not the whole story in this case. There is another equally valid perspective. ‘Nothing about us without us’ applies equally well to parenting. ... If the topic is parenting an autistic child, what better voices than autistic parents?”