A severe autism advocate responds to RFK Jr.'s research initiative
10:30 Share

There's a saying in the autism community. If you've met one person with autism, you've met one person with autism. Meaning no two people with the disorder are affected in the same way. And yet, in popular media, there can be a narrow range of depictions of people with autism. There's Dustin Hoffman's portrayal of an autistic savant in the 1988 movie Rain Man.

How do you know this car? Definitely know this car. It's a 1949 Buick Roadmaster, straight-eight, fireball-eight, only 8,095 production models. Or the brilliant but socially inept surgeon Sean Murphy on ABC's The Good Doctor. Yes, he has autism, but he also has savant syndrome. Genius-level skills in several areas. He has almost perfect recall. He has spatial intelligence, and he sees things.

and analyzes things in ways that are just remarkable. Or the sweet but awkward participants on the Netflix show about dating called Love on the Spectrum. I don't want to be alone. I want to find someone. I haven't dated in 33 years. You could imagine I have to kiss many frogs to find the right guy. And then there's the way Health and Human Services Secretary Robert F. Kennedy Jr. portrayed autism.

And these are kids who will never pay taxes. They'll never hold a job. They'll never play baseball. They'll never write a poem. They'll never go out on a date. Many of them will never use a toilet unassisted.

Secretary Kennedy made those remarks at a press conference earlier this month where he declared autism to be an epidemic and announced a series of studies looking to identify an environmental toxin as the cause. In reality, there are multiple ways the developmental disorder manifests itself.

Consider this. Autism affects one in 31 children in the United States. What will it mean for them and their families now that Secretary Kennedy has turned the spotlight on autism? From NPR, I'm Mary Louise Kelly.

This message comes from Comedy Central's The Daily Show. Jon Stewart and The Daily Show news team are covering the final week of President Trump's second first 100 days, with a different host every night. There's never been a week like this, because there's never been a president like this, except for the last time he was president. The Daily Show, new weeknights at 11, 10 Central on Comedy Central, and next day on Paramount+.

This message comes from Schwab. At Schwab, how you invest is your choice, not theirs. That's why when it comes to managing your wealth, Schwab gives you more choices. You can invest and trade on your own. Plus, get advice and more comprehensive wealth solutions to help meet your unique needs. With award-winning service, low costs, and transparent advice, you can manage your wealth your way at Schwab. Visit Schwab.com to learn more.

This message comes from Carvana. Sell your car right now to Carvana. Just enter your license plate or VIN and get a real offer that's good for seven days. Sell to Carvana today. ♪♪

It's Consider This from NPR. Jill Escher is the president of the National Council on Severe Autism. She's also a mom, the parent of children severely affected by the disorder. My son, for example, he is 26 years old. He's nonverbal. His functioning is probably below that of a preschooler. I mean, he's a big, lovable bear of a guy, but he's not a good boy.

It has been so hard to talk about his realities in public because we are immediately kind of instacastigated for talking about them. And that's not all right. Many in the autism community criticized Secretary Kennedy's remarks as insensitive and stigmatizing. When we spoke...

Jill Escher had a different reaction. So it feels important to acknowledge just at the very start that autism has such a range of manifestations from people who are nonverbal, who will need lifetime support, to people who have autism, and it might not be evident to those who don't know them. How did Secretary Kennedy's remarks land with you? Well, certainly, I

I think everybody in this field knew that those remarks didn't apply to the broad spectrum of autism, but they certainly do apply to a very significant subset of us. And that would include my own two kids who are adults now with nonverbal profound autism. I mean, they're never going to write a poem. They don't even know what a poem is. They're not going to play baseball. I don't think they'd ever be able to hold back.

appropriately. And they definitely need some assistance with toileting and all their hygiene. So it's not like these comments were at all shocking to a very broad swath of the autism population. So to dig in a bit more on what Secretary Kennedy said, he also said his agency is going to study which environmental toxins cause autism. For starters, is that the right framing?

in your view, for the science here? Well, I think that Kennedy is asking the right big question, which is what is behind these

increasing rates of autism in our children. And he also emphasized how true those rates are, that this is truly an epidemic. He used the E word, which is the appropriate word to use. He had a sense of urgency about it, which is appropriate and necessary. But then he

he turned to the idea of environmental toxins maybe being a culprit here. Now, I think there has been quite a bit of research on autism causation over the past two decades. And we have learned pretty emphatically that things like mold, things like ultrasounds, things in our water and air are not causing autism.

So I would rule out a lot of the factors that he gave some lip service to. However,

That doesn't mean we shouldn't be looking for other things that maybe he didn't discuss. It's really important to have a strong science agenda behind finding the risk factors for autism. The question is, how do you stick very close to what we've already learned in scientific endeavors and really find the hypotheses that are worth exploring? The ones he mentioned, I'm not so sure are.

I want to square what you're saying with the latest CDC report, which acknowledges, yes, autism rates are on the rise. Their findings are that now one in 31 children across the U.S. have autism.

But the report also says the increase is probably largely due to doctors getting better at screening, at diagnosing, at seeing what was always there. How do we score that? Well, what you have just told me. You can look at the short term or you can look at the long term. In the short term, you know, year over year, you might see some effects of better screening, better diagnosis.

But we are talking about an increase that has been occurring since the early 90s with very significant increases of about 7% a year. And there is just nothing in the base of evidence that suggests that this sweeping increase is

is owing to these sort of diagnostic or sociological factors. We see increases in autism even when you limit it to the most profound forms of autism, even if you limit it to autism with intellectual disability. So it's not just that we're capturing milder cases. That's not it at all. So let me turn us from

Two questions about, so what do we do? What sort of support systems need to be developed? Because I knew your organization is calling for comprehensive support systems. What, in your view, is needed? What would it look like? Yes, I think what alarmed people was that RFK Jr. made these remarks about the autism epidemic. Okay.

But that wasn't joined by a sense of alarm about the need for ongoing lifespan care. We don't have enough resources. We don't have enough clinicians. We don't have enough therapies. We don't have enough

housing options at all. I mean, when we poll parents, parents are absolutely panicked about the future because they look in front of them and they don't see a roadmap for their children as they grow older. And this is a national crisis. So it would be nice if, as we talked about the rising rates of autism, we would also open the floodgates to more and more services and supports.

When you're calling for better support for people with autism, we are living in a moment where we see the federal government trying to cut costs, not trying to add spending. Realistically, is more help coming? Unfortunately, right now, the system is already broken. Families that are experiencing...

immense trauma are not getting the help they need. And the prospect of seeing the situation worsen is terrifying to people in our community. Ultimately, I know that it's not politically fashionable, but we will need to see more funding go, especially to the adults who

It's such an interesting moment with so much focus, so much conversation on autism right now. What is that like for you?

Oh, you know, I think it's an excellent thing for the country. I really do. I think we have to have this moment. We have to have a reckoning about the reality of the autism increase.

And while people have good reason to criticize RFK Jr. for many things, I don't think he should be criticized for this. He is doing the country a big favor. We have to have serious discussions about causation. We have to have serious discussions about revising policy to meet the needs. We should not be romanticizing autism. I mean, yes, of course. I mean, I love my children with autism to pieces. I love my autism community.

But we have to be realistic about what's going on. Autism is, by definition, a serious neurodevelopmental disability. And there's no reason to be normalizing it when we still have so many unanswered questions about what might be causing it and what we should be doing about it. Jill Escher is president of the National Council on Severe Autism. Jill Escher, thank you. Thank you.

This episode was produced by Mia Venkat. It was edited by Patrick Jaron-Wadanan and Courtney Dornan. Our executive producer is Sammy Yenigan. It's Consider This from NPR. I'm Mary Louise Kelly.

Support for NPR and the following message come from Washington Wise. Decisions made in Washington can affect your portfolio every day. Washington Wise from Charles Schwab is an original podcast that unpacks the stories making news in Washington. Listen at schwab.com slash Washington Wise.

This message comes from NPR sponsor Rosetta Stone, an expert in language learning for 30 years. Right now, NPR listeners can get Rosetta Stone's lifetime membership to 25 different languages for 50% off. Learn more at rosettastone.com slash NPR.

This message comes from NPR sponsor, Mattress Firm. Better sleep starts with the right mattress. Plus, you can take 120 nights to try it. Get matched at Mattress Firm's Upgrade Your Sleep Sale and sleep at night. Restrictions apply. See mattressfirm.com or store for details.