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Brian Lehrer: It's the Brian Lehrer Show on WNYC. Good morning again, everyone. April is Autism Awareness Month, as some of you know, a time in which we're supposed to honor the diverse life experiences of those on the spectrum. Instead, the US Secretary of Health and Human Services, Robert F. Kennedy, Jr., has ruffled the feathers of autism advocates and people on the spectrum with this comment he made at a news conference last week. Let's listen.

Robert F. Kennedy, Jr.: This is an individual tragedy as well. Autism destroys families. More importantly, it destroys our greatest resource, which is our children. These are children who should not be suffering like this. These are kids who many of them were fully functional and regressed because of some environmental exposure into autism when they're two years old. 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. We have to recognize we are doing this to our children, and we need to put an end to it.

Brian Lehrer: RFK Jr. last week, there's much to question in that, which we will do with our guest in just a second. Also in the news this week, the National Institute of Health's director, Jay Bhattacharya, announced to a panel of experts that the agency will begin collecting scores of private pieces of medical data from Americans to conduct a study on the causes of autism. This data will come from federal and commercial databases like "medication records from pharmacies, lab testing, and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service claims from private insurers, and data from smart watchers and fitness trackers," that according to the Guardian.

Yesterday, the US Department of Health and Human Services walked back the idea of an autism registry in statements to news outlets, saying, "We are not creating an autism registry. The real world data platform will link existing data sets to support research into causes of autism and insights into improved treatment strategies." Is this the same idea under another name? I guess we'll have to wait and see.

Joining me now to respond to all of this news is Colin Killick. He's the executive director of the Autistic Self Advocacy Network, a nonprofit working to empower autistic people across the world to take control of their own lives, their definition says, and ensure their voices are heard in the national conversation. Colin, let's have a bit of that national conversation here in Autism Awareness Month. Thanks for joining us. Welcome to WNYC.

Colin Killick: Thank you so much for having me. It's a pleasure to be on. This has all been consuming virtually every minute of lives of me and my staff over the last couple of weeks, as you might imagine.

Brian Lehrer: As I might imagine. Let's start by going through some of the things in that RFK clip. One, we know that autism is a spectrum disorder, meaning it appears with varying levels of severity in the community. There certainly are children with autism or even other health issues who may not live independently. What do you want to say about how RFK Jr. spoke about that experience in the clip?

Colin Killick: Yes, he's fractally wrong, factually and morally. First of all, there's a rhetorical sleight of hand, removing the goalposts here, where he talks about a supposed autism epidemic, these growing rates, and then speaks about the most intense forms of impairment, the highest level of support needs, as though that is what is growing so fast. In fact, the growth in the number of people diagnosed with autism is mostly what's going on with people with lower support needs who would have been missed in the past or who would have been diagnosed with other things.

Now we understand autism better. We've modified the standards correctly, and so more people are being diagnosed both as children and as adults. Secondly, what he said about, oh, that autistic people can't do all of these things. I mean, doctors, myself is an autistic person with low support needs, or anyone on our staff. More importantly, it's not true of many, many autistic people with the highest level of support needs, either. I would point to there are autistic people who have intellectual disabilities, autistic people who are nonverbal, who write poetry, who play sports, certainly who date.

In fact, our organization has fought for the rights of autistic people who live in group homes, who are adults, to be able to have romantic relationships. Even someone who can't do any of those things has not been destroyed, and certainly their family has not been destroyed. Their life is still worth living. There is still joy in it. They should be supported, not written off. To say someone has been destroyed is to give up on them as a human being. That's really what he's doing here. It's frankly eugenic. There's no other word for it.

Brian Lehrer: Listeners, if you are on the autism spectrum or a loved one is, and you want to call in on this topic and talk about how they're dealing with it so far in the Health and Human Services Department under RFK Jr. or in the Trump administration generally, or at the CDC. Now we invite your calls or your personal experiences, I should say your calls with your personal experiences, or your questions, or your comments. 212-433-WNYC, 212-433-9692 for our guest, Colin Killick, executive director of the Autistic Self Advocacy Network, 212-433-9692.

So far, we've mostly addressed the implication in the RFK clip that there isn't much of a spectrum as if everybody with autism was in the most severe quadrant or whatever it is of people with autism. Now, let's address another thing in that clip, and you started to touch on it, and that is what we know about the causes of autism. He claimed in the clip that many children with autism were fully functional and regressed due to environmental exposures at a young age. Then later, he referred to autism as a preventable disease.

He referred to a CDC report, Centers for Disease Control, while speaking to the press earlier this week, which found that autism prevalence in the United States has increased from 1 in 36 children 5 years ago to 1 in 31 children in 2022. That report notes that comprehensive screening is likely the reason why. Where would you begin on how much the diagnosis of autism has increased in the United States, and how much you think that means the actual prevalence of autism has increased?

Colin Killick: There's no evidence that the actual prevalence has gone up. That report exactly talks about improved screening practices. For instance, it talks about a site in Puerto Rico, how there was this very concerted campaign to do more early identification in Puerto Rico and to spread information about signs of autism, to get more people to get their children evaluated. Lo and behold, when you look harder, you find more cases. That's a public health success. That's not a sign of something going wrong.

Yes, what has been going on here is, one, we've gotten better at identifying autism, and two, we've gotten better at understanding what autism is. Part of the reason rates used to be so much lower is because there used to be other distinct diagnoses like Asperger's that have gotten folded into autism, because as we've done more, we've come to understand the condition better. We've understood that those cutoffs were arbitrary, that if you got the same person identified by different specialists, they would come to different conclusions, and that everyone was better served by saying, no, this is all autism. It's just a broad spectrum with many different manifestations.

It's important also to say that there's the notion of this being a line from least severe to most severe is really the wrong way of looking at it. It's a constellation autistic people have. Different autistic people have different strengths and different weaknesses, areas where they need support and areas where they don't. Obviously, some people have a higher overall level of support need, or some people have intellectual disability as part of their autism, some people don't.

This idea of high functioning and low functioning, or severe and non-severe, is an oversimplification. That's important to say as well. Also, since you're in New York, I'd be remiss if I didn't mention a beautiful letter by Jordan Zimmerman, who's a non-speaking autistic advocate, that was published in this week's New York Times. Folks should check that out.

Brian Lehrer: When he referred, RFK, to autism as a preventable disease, you seem to be rejecting it out of hand. Is it true, is it not true that there's a lot we don't know about the causes of autism, and maybe it is to some degree preventable? Maybe it is to some degree from environmental exposures in infancy, in the womb, maybe it's the prevalence of plastics or something else. I'm not positing any of these things. I'm saying some of these things are possible. We seem to see RFK always wanting to hang it on vaccines, even though there's been so much data refuting that. Where do you stand on the possibility that things in the environment are causing autism and are causing an increase?

Colin Killick: This has been one of the most studied subjects in public health over the last several decades. At least tens of millions, almost certainly hundreds of millions of dollars has been poured into researching this, looking for supposed environmental causes. It's not an inherently absurd question to ask, but we have done all of this research, and it hasn't turned up anything in terms of environmental causes. There is a little bit of data to suggest that prenatal-- intake of vitamins by mothers might have a tiny impact. Hard to know whether that's at all causal.

Conversely, there is a ton of evidence of a genetic basis for autism, including obviously the fact that it runs in families. The other thing is, if there were an environmental cause, we would see huge variation in autism rates between countries, between locations, based on differing levels of environmental exposure. We've not seen that. Contrary to what he says, this is not a topic of research that's been suppressed. It's a topic that has gotten lots of funding, including government funding, and it just hasn't turned it up.

Meanwhile, research that might actually make autistic people's lives better, whether that's research on other kinds of medical conditions that tend to be comorbid with autism, like connective tissue disorders or certain kinds of digestive problems, or research on ways to make autistic people's lives better, like helping autistic people find employment or better supports, has been underfunded and in fact has been slashed specifically by this administration.

They cut millions of dollars in funding to Vanderbilt that was going to help autistic people find careers in STEM, for instance. Really, he's talking about pouring money into an area that has shown very little in terms of results, while taking funding away from studies that we know would actually help the autistic people who are alive today.

Brian Lehrer: Listener in support of RFK writes, "What Bobby said was he didn't claim the worst cases occur in all autistic cases. He stated the stats." Is that a fair pushback on the conclusion from the clip that he was not acknowledging the spectrum if you accept the notion of the spectrum, the variety of severities?

Colin Killick: Fundamentally, what he was saying is not true of the autistic people who have the highest levels of support needs. The autistic people who do have intellectual disabilities who are non-speaking. It is not true. Firstly, there are many autistic people in that category who can do those things, more importantly, people who can do those things. That does not mean that their lives have been destroyed. Their lives are worthwhile. What autistic people with the highest levels of support needs need is more investment into supports and services, including of the kinds that are provided through Medicaid, which this administration is presently trying to slash.

Brian Lehrer: Here's a social worker who has something to say about this. Robert in Brooklyn, you're on WNYC. Hello.

Robert: Yes, hi. I'm not-- First of all, the things that RFK says, and I heard his statement, was just awful, an awful affront against a community typical of the Trump administration, against a community that is in need of help and has been downtrodden for many years, for many reasons. I'm also, I agree with this, your guest, that there is clearly a genetic connection, and there is literature on that. I also think that the spectrum may have a cutoff point and that autism is many things and many configurations of genes, and profoundly autistic people may be very different genetically than people who have high-functioning autism.

Most of all, I agree with your speaker in saying what Kennedy said smacked up eugenics because he talked about the worthlessness of people, implying that they have no place in society. That is one of the most disgusting things I have ever heard anyone in the government say. It's absolutely correct that people who have kids with disabilities, whatever level, deserve help, deserve support, deserve tax dollars. Further, those who are functional deserve every possible approach to be supported with tax dollars to get them to be able to do the things that they need to do to actualize their lives.

Brian Lehrer: Robert, thank you very much for your call. I wonder if you want to go more into that, Colin, because you come back several times to what people with autism need is social supports, including government supports. What would be on your policy agenda, and how much of that exists?

Colin Killick: Yes, I mean a few different things. One is more availability of things like personal care services, more availability of housing supports. Our general position is that the best thing for autistic people is to have maximal community integration. Autistic people should be able to live in the community alongside everybody else with the supports that they need to live a full life. If autistic people can live-- Some autistic people live in group homes. Some of those provide something that's genuinely independent living. Some of those provide things that are institutions in miniature. Because, of course, in the bad old days, autistic people were herded into these large, often very grim, isolated facilities.

More funding for community living, more funding for access to things like augmented and alternative communication. One thing is this is this binary. People talk about, oh, speaking versus non-speaking. Of course, there are lots of autistic people who cannot speak out loud, but who can, with the right training and supports and technology, communicate in other ways. That totally opens up people's lives and changes them.

I think better access to school supports, classroom supports to make sure that people can be fully integrated into mainstream classrooms instead of segregated away from them. Then I think we also need, though, more training and understanding for everybody else. We need more resources for employers to break down some of the bias and stigma that keep autistic people out of jobs. We need more-- there's all kinds of demonization of DEI. Disability is part of DEI or DEIA. Accessibility. More investment into that thing, making the world more accessible for autistic people, would go a long way for our community.

Brian Lehrer: Some interesting texts coming in. One citing a few people who may be somewhere on the spectrum. Listener writes, "While there's no definitive diagnosis, many researchers speculate that Albert Einstein may have had Asperger's syndrome, a form of autism spectrum disorder." Someone else writes along those lines, sorry, "How does RFK Jr. square the fact that Elon Musk self-declared that he has Asperger's while hosting SNL?" I'm curious your reaction when people bring people like Musk and Albert Einstein into it as models.

Colin Killick: Yes, I think in terms of his behavior, I could scarcely think of a worse ambassador for our community than Elon Musk. It's true that, yes, there are great autistic people who have achieved remarkable things, who are real experts in their fields. As an autistic person myself, I am certainly proud of what autistic people have accomplished. I think really what I would say is, autism is a developmental difference. Autism is-- there's the old phrase that I like is that it's not a bug. It's a different operating system, and it manifests very differently in different people.

Many autistic people have areas that they really struggle. Many autistic people have areas that they are very proficient in. I think really what we hope for is a world in which autistic people are able both to demonstrate their strengths and have support for the areas where they need it.

Brian Lehrer: Some more texts which indicate, I think, that even people who are very skeptical of RFK Jr. wonder what causes autism and feel like it's not been answered yet. Here are texts that are coming in one after another after another. What about the idea that two old eggs and sperm are the cause? Could gestational diabetes be related to the cause of autism? Another one-- These go on. I'm going to take a caller to complete this set. Alicia in Queens, you are on WNYC. Hello, Alicia.

Alicia: Good morning. I get frustrated when I hear people say it's mostly genetic because I totally disagree with that. As someone who has autistic people, multiple autistic people in their family. It goes from nonverbal in a diaper as a teenager and has to be cared for like a baby to high-functioning people, who do toe walking or hand flapping to self-soothe. Just like autism has different levels, I think there's multiple causes of autism also. I don't think it's been researched adequately.

Robert Kennedy is probably not the best spokesperson for this area because he doesn't come out and say things in a clear manner. I don't think he meant that all autistic people broke up families, but some autistic people, families have been broken up over it, because of the extreme stress that has been put on the family by a severely autistic person. I think that we need to do some more research. I think we need to let him-- I don't believe in a registry of all autistic people, but those who want to volunteer. I think a volunteering registry is a perfect thing.

Brian Lehrer: Alicia, thank you very much. Colin, how do you react to her and those texts that I read?

Colin Killick: Yes, a few things. I think this area-- Investigating the causes of autism is a subject that a lot of money has been poured into over the years. I'm sure money will continue to be poured into it. I want to focus on something she said about families been broken up because of these autistic people. I think I would say, nobody, and certainly not us, are saying that it is easy to be a parent of an autistic child, especially an autistic child with high support needs. It is not the autistic child, the autistic person, that is destroying, breaking up that family. It is a society without adequate supports being available.

The thing that we fight for incredibly hard is for people to have access to in-home care. Have access to genuine occupational therapy. Have access to all the things that can make an autistic person's life better and ease some of the challenges that those families face. Again, I bring up Medicaid because that is the primary thing that provides these services. If this administration's budget proposals go through, not only is Medicaid going to get slashed, but those services that autistic people rely on are mostly what are called waiver services, which means, without going down a whole policy rabbit hole, they're optional for states to provide.

There's a very good chance those are the services that are going to be on the chopping block if funding for Medicaid gets cut. If you're concerned for parents of autistic kids with high support needs, absolutely, we are, too. The answer is for those parents, those families who have access to more and better supports to make sure that those autistic people get the care that they need, and that it's not falling on family members to do all of that unpaid. That's the problem, not the existence of autistic people inherently, which autistic people have always existed. I think the odds are very good that autistic people are always going to exist.

Brian Lehrer: I want to get to this idea of an autism registry. I mentioned it in the intro. The previous caller brought it up to remind listeners again of what this is and why we're even talking about that kind of thing. On Tuesday, the NIH announced this broad autism study and their plans to collect medical data held by both the government and private companies. In reference to the concept of an autism registry, some have compared it to the eugenics of Nazi Germany. Yesterday, HHS walked back the idea of an autism registry, but did say they'll still be creating a real-world data platform.

I'm curious if you buy HHS's reassurance that a registry won't be created. To read a little more from the intro to this segment, quoting from a Guardian article on the topic, they said it would include data from databases like medication records from pharmacies, lab testing and genomics, data from patients treated by the Department of Veterans Affairs and Indian Health Service, even claims from private insurers and data from smart watches and fitness trackers. That was in the original description. What's your understanding of what they've walked back now, and how reassured are you? If you're not, what's the threat?

Colin Killick: It's really hard to know what's going on here because our community has been so completely cut out. To give people a sense of what has happened behind the scenes previously and now. Under previous administrations, including under the first Trump administration, there were coordinating bodies within Health and Human Services that directly interacted with autistic people with autism organizations, including ours. There was an interagency autism coordinating committee. We had a seat at the table. We were getting information. We could voice concerns.

They didn't obviously always agree with us, but we had the sense of what's going on. All of that has completely stopped. There has been a total communications freeze. Not only have not us, even the other organizations we work with, even folks like Autism Speaks, who disagree with him a lot, have largely been frozen out of this process. We often don't know anything more than what's being reported in the press. In a circumstance like this, it's really a case where like the devil is in the details. Given the eugenic rhetoric coming out of RFK Jr.'s mouth, there is no surprise that people panicked here.

I think that panic was entirely understandable. The real question here is, firstly, about privacy. There's nothing wrong in principle with pulling together large data sets for research, provided that they are properly de-identified. When that data gets handed to researchers, they can't pull out any personal information about who these specific people are. There's rows in a data set that you can do data analysis on. That's fine, depending on what the research itself is. That doesn't necessarily pose privacy risks, and there's been research done like that that we support.

On the other hand, if that data isn't properly de-identified. If there is a list out there being made available to researchers with names, addresses, Social Security numbers of autistic people tied to their health records, that's a very different matter. That does pose a real risk of invasion of privacy, especially given that some of the "researchers", and I put that in air quotes, that RFK Jr. has worked with, folks like David Geier, are conspiracy theorists, who have-- He was fined for practicing medicine without a license, giving Lupron to autistic children while falsely claiming it was a potential cure.

We don't know in terms of really what this registry was supposed to be, how this data was going to be handled. It could be somewhat relatively innocuous. It could be something relatively dangerous. It's hard to know for sure. Encouraging to see the response to this public pushback, but I think we're going to have to wait and see in terms of how that plays out. The other risk that I definitely don't think has been alleviated is that this data may be used to do phony research. To do disingenuous research on things like vaccines.

Where, contrary to what the secretary says, vaccines do not cause autism. This subject in particular has been studied over and over and over again. There have been research studies involving more than half a million children. In the case of one study in Denmark, there have been meta-analyses involving more than one and a half million children. There is zero evidence for vaccines causing autism. I think there's real sense that with access to these kinds of data sets that a researcher who was acting in bad faith could manipulate data or construct regressions in a way to show an apparent correlation where there was not in fact any causation.

Brian Lehrer: Some more texts. Listener writes, "The previous caller says she doesn't believe autism has a strong genetic basis, yet then points to examples of several family members with autism demonstrating that there is a familial connection." Related, another listener unhappy with what some other listeners have been writing, says, "Is it really so hard for people to believe that people are neurologically diverse and that something can be purely variations of neurological structure and not a disease?" We'll take one more caller. Reisha in Brooklyn, you're on WNYC. Hi, Reisha. We're almost out of time in the segment, so we've got about 30 seconds for you. Hi.

Reisha: Hi. I'm Reisha. I'm a clinical psychologist. I specialize in assessing neurodiversity, especially subtle autism in women, gender diverse people, and bipoc folks. One part of this conversation that can't be highlighted enough is that by looking for a cause, much like looking for a cause for queerness, you're suggesting that this is something you might want to stop or fix in some way, as opposed to looking at human neurodiversity as part of a healthy diversity that exists in our population, knowing that for every single person, whether they identify as neurodiverse or not, there are things that are easy about your life and there may be things that are really not easy that you need support with.

Brian Lehrer: There are those who would push back on that and say, for those who have such severe, if you want to use that word, cases that they can't live independently and things like that, that it oversimplifies just to say people are diverse. We should support people who are diverse, which, of course, we should. If there is a cause to be found of things that really make people's lives very unhappy, it should be looked for. How would you respond to that?

Reisha: I absolutely agree that everybody deserves--

Brian Lehrer: Reisha, go ahead.

Reisha: Thank you. Everybody deserves the supports that are going to make their life easier. Some people have very different experiences of what it means to live in their body in the context of the society, whether or not they have autism. That for some people, that may be a really uncomfortable experience, and justifiably so. When I'm thinking about supports for somebody who's maybe less affected, I'm thinking about insurance companies that are willing to cover loops or therapex that might be devices that allow one to be in spaces and in community with others in a way that's happy and healthy for them and that other people may have co-occurring conditions that make things even more difficult, so they may have autism as well as an intellectual disability, or autism as well as chronic health or seizures or anything else that just adds to the difficulty and the support that they need to live happy lives.

Brian Lehrer: Thank you very much for your call. We've got just time for a sound bite of one more answer, Colin, so go for it on that call or anything else you want.

Colin Killick: I think that was incredibly well put and honestly a pretty excellent note to end on. Autistic people exist. The evidence is very good that we've always existed, and I hope that our society can orient itself towards providing autistic people the supports that they need to thrive and the acceptance. We talked about April as Autism Acceptance Month to be part of society alongside everybody else.

Brian Lehrer: Colin Killick, executive director of the Autistic Self Advocacy Network, thank you very much for joining us for Autism Acceptance Month.

Colin Killick: Thank you for having me.

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