MARY LOUISE KELLY, HOST:
Robert F. Kennedy Jr., the secretary of Health and Human Services, says that by September, his agency will begin to have answers to the question of what causes autism. When he announced this initiative earlier this month, here is how he characterized people with autism.
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ROBERT F KENNEDY JR: 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.
KELLY: That is not true for many autistic people, and his language was widely criticized as insensitive, as stigmatizing. It is true, though, that about a quarter of those diagnosed with autism are profoundly affected by the disorder, and I want to bring in one of their advocates to help us better understand the secretary's remarks. Jill Escher is president of the National Council on Severe Autism. Jill Escher, welcome.
JILL ESCHER: Thank you for having me.
KELLY: 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?
ESCHER: Well, certainly, 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 a bat 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.
KELLY: 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?
ESCHER: Well, I think that Kennedy is asking the right big question, which is - what is behind these regularly 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 turned to, you know, 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, you know, 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.
KELLY: I want to score what you're saying with the latest CDC report, which acknowledges, yes, autism rates are on the rise. Their findings are that now 1 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 - what you have just told me?
ESCHER: 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 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, you know, milder cases. That's not it at all.
KELLY: So let me turn us from causation to 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?
ESCHER: Yes, I think what alarmed people was that RFK Jr. made these remarks about the autism epidemic, 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 road map 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 flood gates to more and more services and supports.
KELLY: 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 to...
ESCHER: Right.
KELLY: ...Spending. Realistically, is more help coming?
ESCHER: You know, unfortunately, right now, the system is already broken. You know, families that are experiencing, you know, 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 with disabling autism. The data doesn't lie. The data is there. It's easy to project, and we will need that.
KELLY: It's such an interesting moment with so much focus, so much conversation on autism right now. What is that like for you?
ESCHER: 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.
KELLY: Jill Escher is president of the National Council on Severe Autism. Jill Escher, thank you.
ESCHER: Thank you.
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