A severe autism advocate responds to RFK Jr.'s research initiative

Summary

Consider This from NPR: A Severe Autism Advocate Responds to RFK Jr.'s Research Initiative

Introduction

In the April 28, 2025 episode of NPR's Consider This, host Mary Louise Kelly delves into the recent controversial remarks made by Health and Human Services Secretary Robert F. Kennedy Jr. regarding autism. The episode features an in-depth conversation with Jill Escher, president of the National Council on Severe Autism and a mother to children profoundly affected by the disorder. This detailed summary captures the key discussions, insights, and conclusions from their dialogue.

Media Portrayals of Autism

Mary Louise Kelly begins by highlighting the diverse representations of autism in popular media. She underscores the complexity of the autism spectrum with the saying, "if you've met one person with autism, you've met one person with autism," emphasizing that no two individuals are affected in the same way.

• Rain Man & The Good Doctor: Kelly references Rain Man (1988) and The Good Doctor to illustrate stereotypical portrayals of autism, focusing on savant abilities and social ineptitude.

  Mary Louise Kelly [00:00]: "There's a saying in the autism community, if you've met one person with autism, you've met one person with autism..."

• Love on the Spectrum: The discussion extends to reality television, specifically Love on the Spectrum, which presents sweet but socially awkward individuals seeking relationships.

  Jill Escher [00:40]: "You could imagine I have to kiss many frogs to find the right guy."

RFK Jr.'s Remarks and Their Impact

The conversation pivots to the recent statements by RFK Jr., where he portrayed autism in a highly negative light, suggesting severe limitations for individuals with the disorder.

• Kennedy's Comments: Kennedy described autism as an epidemic, claiming affected children "will never pay taxes," "hold a job," or "write a poem."

  Jill Escher [01:12]: "They are never going to write a poem. They don't even know what a poem is. They're not going to play baseball."

Kelly explains that these remarks have sparked significant backlash within the autism community.

Mary Louise Kelly [01:36]: "...Jill Escher had a different reaction."

Jill Escher’s Perspective on Autism Spectrum

Jill Escher provides a nuanced view of autism, particularly focusing on severe cases.

• Personal Experience: Escher shares her experience as a mother of two adults with non-verbal, profound autism, highlighting the daily challenges and societal misunderstandings they face.

  Jill Escher [02:31]: "My son, for example, he is 26 years old. He's non verbal. His functioning is probably below that of a preschooler."

• Impact of Kennedy's Remarks: While acknowledging that Kennedy's statements resonate with those supporting severe autism, Escher criticizes the oversimplification and generalization of autism's diverse manifestations.

  Jill Escher [03:27]: "...they are never going to write a poem. They don't even know what a poem is..."

Discussion on Autism Rates and Causation

The episode explores the rising statistics of autism diagnoses and the debate surrounding its causes.

• Autism Prevalence: Citing the CDC report, Kelly notes that autism affects 1 in 31 children in the U.S., with increases attributed primarily to improved diagnostic practices.

  Mary Louise Kelly [05:46]: "...the increase is probably largely due to doctors getting better at screening..."

• Escher's Counterpoint: Escher challenges this notion, pointing out that the significant rise since the early '90s cannot be solely explained by better diagnostics. She emphasizes that even the most profound cases have seen increased diagnoses, suggesting other factors at play.

  Jill Escher [06:12]: "We are talking about an increase that has been occurring since the early 90s with very significant increases of about 7% a year."

Support Systems and Policy Recommendations

Transitioning from causation to actionable solutions, Escher outlines the urgent need for comprehensive support systems for individuals with severe autism.

• Current Gaps: She highlights the lack of resources, including clinicians, therapies, and housing options, and underscores the absence of a clear roadmap for families planning for their children's futures.

  Jill Escher [07:17]: "...we don't have enough resources, we don't have enough clinicians, we don't have enough therapies..."

• Policy and Funding: Escher advocates for increased funding, especially for adults with disabling autism, arguing that the current system is failing and that more substantial governmental support is imperative.

  Jill Escher [08:19]: "...we will need to see more funding go especially to the adults with disabling autism."

Conclusion

In wrapping up the conversation, Jill Escher expresses cautious optimism about the heightened focus on autism awareness.

• Awareness vs. Action: While she appreciates the national spotlight, Escher stresses the importance of translating awareness into meaningful policy changes and research efforts.

  Jill Escher [09:06]: "We have to have this moment. We have to have a reckoning about the reality of the autism increase."

Kelly closes the episode by reiterating the critical need for realistic discussions about autism's causes and the development of supportive policies to address the ongoing challenges faced by individuals and families affected by severe autism.

Notable Quotes

• Jill Escher [02:31]: "My son, for example, he is 26 years old. He's non verbal. His functioning is probably below that of a preschooler."
• Mary Louise Kelly [05:46]: "the increase is probably largely due to doctors getting better at screening..."
• Jill Escher [06:12]: "We are talking about an increase that has been occurring since the early 90s with very significant increases of about 7% a year."
• Jill Escher [07:17]: "...we don't have enough resources, we don't have enough clinicians, we don't have enough therapies..."
• Jill Escher [09:06]: "We have to have this moment. We have to have a reckoning about the reality of the autism increase."

Final Thoughts

This episode of Consider This sheds light on the complexities surrounding autism, particularly the severe end of the spectrum, and critiques the narratives that oversimplify or stigmatize individuals with the disorder. Through Jill Escher's poignant insights, listeners gain a deeper understanding of the urgent need for comprehensive support systems and informed policy-making to address the multifaceted challenges posed by autism.

Transcript

[Mary Louise Kelly]

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. You know, these seats were brown on there. There's Dustin Hoffman's portrayal of an autistic savant in the 1988 movie Rain Man. How do you know this car?

[Jill Escher]

Definitely know this car. It's 1949 Buick Roadmaster straight eight, Fireball eight, only 8,095 production models.

[Mary Louise Kelly]

Or the brilliant but socially inept surgeon Sean Murphy on ABC's the Good Doctor.

[Jill Escher]

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.

[Mary Louise Kelly]

Or the sweet but art awkward participants on the Netflix show about dating called Love on the Spectrum.

[Jill Escher]

I don't want to be alone. I want to find someone I haven't.

[Mary Louise Kelly]

Dated in 33 years.

[Jill Escher]

You could imagine I have to kiss many frogs to find the right guy.

[Mary Louise Kelly]

And then there's the way Health and Human Services Secretary Robert F. Kennedy Jr. Portrayed autism. And these are kids who will never.

[Jill Escher]

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.

[Mary Louise Kelly]

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. Consider this autism affects 1 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. 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.

[Jill Escher]

My son, for example, he is 26 years old. He's non verbal. His functioning is probably below that of a preschooler. I mean, he's a big lovable bear of a guy. But it has been so hard to talk about his realities in public because we are immediately kind of insta castigated for talking about them. And that's not all right.

[Mary Louise Kelly]

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?

[Jill 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 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.

[Mary Louise Kelly]

So to dig in a bit more on what Secretary Kennedy said, he also said his agency is gonna study which environmental toxins cause autism, for starters. Is that the right framing, in your view, for the science here?

[Jill 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. 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.

[Mary Louise Kelly]

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 1 in 31 children across the US 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.

[Jill 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 milder cases. That's not it at all.

[Mary Louise 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?

[Jill 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 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.

[Mary Louise 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 spending realistically is more help.

[Jill 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.

[Mary Louise Kelly]

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

[Jill 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. 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.

[Mary Louise Kelly]

Jill Escher is president of the National Council on Severe Autism. Jill Escher, thank you.

[Jill Escher]

Thank you.

[Mary Louise Kelly]

This episode was produced by Mia Venkat. It was edited by Patrick Jaranwadanan and Courtney Dorning. Our executive producer is Sammy Yenigan. It's Consider this from npr. I'm Mary Louise Kelly.