A 'difficult day' for autism

Some details on Monday's press conference

A lot is being written about the misleading press conference and announcement about autism and Tylenol. The New York Times had an excellent piece from Maia Szalavitz that went up quickly and hit a lot of the high points. Like me, Szalavitz was diagnosed as an adult with Asperger’s before it was phased out as a category and had hyperlexia as a child.

Szalavitz points out that the growth in autism diagnoses is occurring among those of us who need less support, not among those with high-support needs or intellectual disability. She reviews the strong evidence that autism is primarily genetic and that parents with autistic traits may be more likely now to have children together than in the past and produce autistic children. She also covers the fact that best thing we can be doing is getting more autistic children and adults the support and accommodation they need. She even hits on the double empathy problem, which is that autistic people are perceived as lacking empathy when what we normally lack is the ability to intuit what another person is feeling.

Couple of tidbits that might not have been picked up elsewhere. The president mentioned the higher autism rates in California. Trump said that they have a “more severe problem” in California, but his own CDC report stated that there were simply improvements in making diagnoses there. Also, he tried to claim that the Amish had no autism because they don’t take medicine or vaccines, and when he asked someone to confirm that, even Secretary Kennedy would only say there had been some studies. Trump responded that, “I’m not so careful.” As always, Jess Steier over at Unbiased Science, has a ton of great stuff on this, including that Amish folks have autism and are just diagnosed at lower rates.

RFK also gave a monologue about how he was closely examining the link between vaccines and autism. He chastised the scientific community because he said 40-70% of mothers who have children with autism believe their child were injured by vaccines, and they were being ignored. That flies in the face of the millions of dollars that have been invested in testing whether autism is linked to vaccination and showing no link.

In doing research for my book on autism, I have interviewed many physician-scientists who take care of adults and children who are autistic and study the social and biological parts of the disorder. They are the most capable and caring cohort of colleagues you can find. In the end, we need to trust these autism clinicians to digest and spread the right information in a compassionate way. All we can hope for is that their outstanding, individual caring for children and families will carry the day over the noisy and hurtful political messages on social media and cable television.

Finally, I loved this four-way dialogue from some very important and prominent leaders in autism. Alison Singer is the leader of the Autism Science Foundation, which is looking for a cure for autism and strongly advocates for the rights of children with severe (profound) symptoms as deserving the most attention. She’s talking to Eric Garcia who wrote a terrific book called We Are Not Broken that advocates for the neurodiversity framework of autism acceptance. They couldn’t be farther apart in the autism community. Also, in the chat were Helen Tager-Flusberg and Brian Lee who are two outstanding researchers. Despite Alison and Eric’s differences, here they are agreeing that the announcement was harmful:

‘Alison Singer: It took me straight back to when moms were blamed for autism. If you can’t take the pain or deal with fever, if you can’t tough it out, then you are to blame if your child has autism. That was shocking. Simply shocking.

Helen Tager-Flusberg: I was expecting some of what was presented, but I have to say I was shocked and appalled to hear the extreme statements without evidence in support of what any of the presenters said. In some respects this was the most unhinged discussion of autism that I have ever listened to. It was clear that none of the presenters knew much about autism — other than the mothers’ lived experience — and nothing about the existing science. This may be the most difficult day in my career.

Eric Garcia: Same here. The other comment that hit me was Dr. Marty Makary, the Food and Drug Administration commissioner, saying: “If you’ve seen a kid with autism, with severe autism, it’s hard to watch. Kids get frustrated, they get angry, they can be crying because they want to speak and they can’t speak. It’s hard to watch.” Nobody disputes that high-support-needs autistic people have significant health challenges. But him saying “we can end the suffering” and “it may be entirely preventable” will offer tons of folks false hope.’

Read the whole thing. It’s all excellent.

There’s so much great science behind where autism comes from and what works best for autistic people. We all need to double down on sharing it everywhere we can.

Updates: Here is a column from my old pal, Joe Nocera, in The Free Press where I’m quoted along with Paul Offit and others.

Here’s a very comprehensive piece from Richard Grinker who has been one of my most important guides on autism.