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The New Yorker Radio Hour
What Robert F. Kennedy, Jr., Doesn’t Understand About Autism
00:30:23
An autism researcher on Kennedy’s initiative to identify a cause, the focus on environmental factors, and the dangers of misinformation.
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- [00:01]
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New Yorker Radio Hour Intro
This is the New Yorker Radio Hour, a co production of WNYC Studios and the New Yorker.
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David Remnick
Welcome to the New Yorker Radio Hour. I'm David Remnick.
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Robert F. Kennedy Jr.
When you hear 10,000, it was 1 in 10,000, and now it's 1 in 31 for autism. I think that's just a terrible thing. It has to be. Something on the outside has to be artificially induced. Has to be.
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David Remnick
Donald Trump's operating procedure involves dismissing expertise of all kinds economic, diplomatic, scientific, you name it. But when he made an alliance with Robert F. Kennedy, Jr. He brought one particular conspiracy theory into the center of the MAGA agenda, the idea that vaccines are responsible for the rise in autism rates. Kennedy, who's now the Secretary of Health and Human Services, has long advanced that notion. Of course, it's been thoroughly discredited by scientists. But the discrediting has only fueled some people's belief that it must be true. According to one survey, as many as 1 in 4Americans today believe that vaccines are linked to autism. Kennedy is not a doctor. He's not a scientist. But as the nation's senior figure in public health, he shocked the medical community and families across the country recently when he said that his agency would soon reveal the cause of autism once and for all.
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Robert F. Kennedy Jr.
We've launched a massive testing and research effort that's going to involve hundreds of scientists from around the world. By September, we will know what has caused the autism epidemic, and we'll be able to eliminate those exposures.
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David Remnick
Now, this is supposed to happen in the fall, just months from now. And the news came even as Kennedy is overseeing drastic cuts to critical medical research of all kinds. So I sat down recently to talk with somebody who's been studying autism for a very long time, Dr. Alicia Halliday. Halliday is chief science officer of the Autism Science foundation, which is a nonprofit that funds research and also provides support and information for families that are grappling with autism. So I'm a writer and a magazine editor, And I've got three kids, and the youngest of the three is in her mid-20s and has what can only be described as profound autism, really very minimal language. Will never live independently, needs a lot of help of all kinds and always has. Obviously changes over time, but it is a great drama in the lives of everybody around her. Siblings, parents, and most of all for her. That's what I bring to the table. And you.
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Dr. Alicia Halladay
So I actually come from a toxicology background by nature, so I.
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David Remnick
As a scientist.
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Dr. Alicia Halladay
As a scientist, yes. And actually studying whether or not vaccines did cause autism back in 1999. And then I got into nonprofit and had two twin girls in 2010, and one of them was diagnosed with autism in 2013. And she was. Will live independently. She goes to mainstream school. She's verbal, she's very, very smart.
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David Remnick
So when you say she has autism.
- [04:19]
Dr. Alicia Halladay
How would one know she was evaluated? Right. So at age three. And then she gets regular evaluations to look at her strengths and weaknesses. And she has some difficulties with executive functioning and social interaction and even things like modulating the own tone of her voice. Doesn't always understand, you know, when she's yelling, has difficulty with social relationships. Again, these things are not debilitating all the time for her sometimes, but not all the time, Whereas in other cases, they absolutely are.
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David Remnick
Now, we're often told that autism is a matter of a spectrum. What does that mean and how do we understand it? It would be worth spending a moment, I think, Alicia, before we get into the research and the politics of all this, to understand the language, because it's quite complicated. We're no longer using the term, for example, Asperger's, which gets thrown around still like crazy. Why don't we use that term? Asperger's?
- [05:19]
Dr. Alicia Halladay
Yeah. So Asperger's was a term that, prior to 2007, was actually a diagnostic term. People had autism or Asperger's or something called PDD nos. And that was used to designate the different levels of functioning. Right. So somebody who is living independently and has a job and maybe has awkward and odd social mannerisms would be considered PDD nos or Asperger's. And then someone who wasn't living independently or had minimal verbal ability, that person would have autism. The intention of that was, was to make sure everybody got the supports that they needed. Right. So people with childhood autism and Asperger's maybe needed different things. Right. So they needed different levels of speech therapy. Or they needed different levels of support. But what was happening was that wasn't always the case. Some clinicians who were very well trained, very well meaning they would diagnose with Asperger's, somebody else would diagnose with PDD nos, somebody would diagnose with autism. And under the new kind of paradigm, it's all under autism spectrum disorder. So if you were, however, diagnosed with Asperger's back in, say, let's say 2000, and you started to identify as someone who maybe very independent and very bright and maybe a out of the box thinker, or someone who has unique strengths that they could bring to an employment situation or something like that, and you identified with the term Asperger's, then people wanted to keep that term. And so if you're referring to yourself or someone you love and you want to use the term Asperger's, go for it. But there are people that believe that, for example, you should use person first language versus identity first language. And I think that falls along lines of people who identify with autism and are proud of their diagnosis and would lead in with, I am an autistic person. And there are other people who don't want their disability or their diagnosis to define them. So they go with person with autism. That has kind of flipped a little bit as certain advocates or a group of advocates in the autism community have said, we should embrace our autism identity and lead in with that. So I think that speaks to some of the dichotomy that's going on.
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David Remnick
They get very angry if they hear that in some way autism is an affliction or a disease or a condition that causes some people to be quite angry. Why is that?
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Dr. Alicia Halladay
Absolutely. I mean, it's not a disease, but they don't like the term. There are certain people that prefer being called a condition because it's just who they are. And there are some people that see it, it as a disorder. Right. It impairs their daily functioning. It impairs the way that they want to live their lives. They find it disabling. So I think a lot of this has fallen on kind of the discourse in the community about what is autism. And the fact is, autism is not the same thing for everybody. Right? So some people do see it as either a superpower or a strength or something that gives them special abilities, whereas some people feel that it's a disability that impairs their ability to do, to live the way they want to live.
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David Remnick
And people have every right to do that, although it's very difficult for me, as a parent, for example, when I know what my daughter has been through over 25 years and what I know that we've gone through as parents and siblings as well, really, really hard and hard to explain to people who haven't gone through it themselves, as with so many other things in life. But when you hear somebody describe it as a superpower, that's. Let's just put it this way, it's hard to hear.
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Dr. Alicia Halladay
I guess everyone is different. But if you are someone who doesn't consider it a strength or something that enhances your life, then that can be very demeaning. Right? It can be very insulting. And I get that. And I think the flip side is there are people that feel that calling a disorder is very insulting. They don't want to be identified with a disorder. And that's part of the reason why I think we've moved in the direction of categories, the profound versus not profound. And within non profound, we can think about different categories.
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David Remnick
What do we know and what do we not know about the sources of autism?
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Dr. Alicia Halladay
So we know that it is highly genetic. So it's pretty complex, right? So we think about autism as being this huge set of conditions. Anybody who knows someone with autism will tell you it's not one thing. It can be some things in some people and some things in other people. And so how on earth could you possibly think that it could be one thing that causes all of it? Right? That is the way we thought about two and a half decades ago. Right? There was a feeling that there was one gene or it was one environmental factor.
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David Remnick
But.
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Dr. Alicia Halladay
But 25 years later, science has shown that there are probably thousands of genes and they interact with multiple environmental factors. And the genes confer a certain amount of risk, and the environmental factors confer a certain amount of risk. But together is where they really confer the most risk. And they don't present. So these combination of things doesn't always present as the same thing in every person.
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David Remnick
So back in April, the new HHS secretary, Robert F. Kennedy, Jr. Started discussing autism. It was his first news conference. And he made some generalizations, a series of generalizations about autism.
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Robert F. Kennedy Jr.
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. And we have to recognize we are doing this to our children and we need to put an end to it.
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David Remnick
When you listen to him, what is your sense of what he knows and what he doesn't know?
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Dr. Alicia Halladay
It's actually hard for me to determine. He said some things that I think he has backtracked on a little bit. For example, he talked about, you know, the autism spectrum, everyone with autism not being able to pay taxes or be able to write poetry. And then on the Dr. Phil show later, he kind of backtracked that a little bit and said, well, I'm talking about profound autism. But then he mischaracterized profound autism again. So I think that when he makes these broad generalizations about people with autism, quote unquote, and he describes everybody as if they're the same within the autism spectrum, I think that that can be misleading. It is misleading, right, because you're giving the wrong impression. And you're also going to probably offend someone who is on one side of the spectrum or has a particular need or not. And so you just can't cast everybody with autism into one big bucket.
- [12:33]
David Remnick
I'm talking with Alicia Halladay of the Autism Science Foundation. This is the New Yorker Radio Hour, and we'll continue our conversation with in just a moment.
- [13:04]
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- [13:19]
Jon Favreau
People it might be enticing to try and sleep through the next four years. But if you're wondering how to survive a second Trump term while staying fully conscious, Pod Save America is here to help you process what's happening now and what comes next. I'm Jon Favreau and Tommy Vietor, Jon Lovett and Dan Pfeiffer, and I wade hip deep into the week's political news and fish out some political analysis you can trust. Yes, Tommy's shoes get ruined. Yes, he'll do it again tomorrow because the endeavor is worth it and so is your sanity. Tune in to Pod Save America, wherever you get your podcasts and on YouTube.
- [13:53]
David Remnick
This is the New Yorker Radio Hour. I'm David Remnick. I've been Speaking today with Dr. Alicia Halladay about the politics and the research going on around autism. Halliday is Chief science Officer of the Autism Science Foundation. She's been studying autism for over 20 years, so you can imagine her surprise when Robert F. Kennedy, Jr. The Health and Human Services secretary, promised to reveal its cause in a study as soon as this fall. Kennedy is a longtime Proponent of conspiracy theories. In fact, when I interviewed him on this program during his presidential campaign, he speculated aloud, without evidence, about a link between antidepressant medications and the rise in school shootings. He's also given a great deal of oxygen to the idea that vaccines, or a component in vaccines causes autism. That idea has proved extremely durable, despite all the science disproving it. I'll return to my conversation with Alicia Halladay. There came a time when an article was published in a very esteemed scientific journal called the Land Set that posited that the reason people would develop autism of one degree or another was because of vaccinations. Tell me about that publication and the influence it's had.
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Dr. Alicia Halladay
So the publication is actually part of the reason I got involved in autism research. The idea was that there are certain things that are added to vaccines to make sure that they are stable over time so they don't have to be frozen or refrigerated. And one of those things was thimerosal, and this is ethylmercury. It's different than the mercury from coal burning power plants. It's different than the mercury you get in fish. And it was a tiny, tiny amount. The idea was it was that mercury in vaccines that was causing some sort of reaction in the body that led to an autism diagnosis.
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David Remnick
And the scientist's name was Andrew Wakefield. Who is he?
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Dr. Alicia Halladay
He is a gastroenterologist from the UK who has since been had his license revoked in the UK and he lives in the United States now. He used to run a clinic in Austin, Texas.
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David Remnick
Wait, he was a gastroenterologist?
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Dr. Alicia Halladay
Yes.
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David Remnick
So he's making this study pretty far outside of his field?
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Dr. Alicia Halladay
No, he is, and the journal later retracted it.
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David Remnick
But isn't an article like that refereed and really edited very carefully in the scientific sense?
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Dr. Alicia Halladay
So the Lancet has been pretty. They've apologized many times and, and certainly many other journals who have dealt with people that have worked with Wakefield have been very, very careful as to making sure that all the references are checked, all the date is double checked, everything's in line. So it was somewhat of a wake up call for some of the scientific journals.
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David Remnick
But just because the Lancet in a sense withdrew the article and apologized for the article, renounced its own article, Wakefield himself has had an afterlife.
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Dr. Alicia Halladay
Oh, he doubled down. He's definitely doubled down. So if you think about, if you took anything in the world, right, and said this is what causes anything, it could have been cancer, it could have been type 1 diabetes. Vaccines are such an easy target. Right. Because here's something that you bring your baby in and you take it to a well child visit and they pull out a needle and you inject this substance into your baby and then the baby starts crying, right? And then all of a sudden that's a simple solution. Injection, baby bad. And people then wondered, why on earth am I even doing this? Why protect against polio? Why protect against measles? Because they were a victim of their own success, right? So people didn't understand the need for them because we weren't facing these diseases anymore.
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David Remnick
Was Wakefield alone in this quote unquote discovery which then had to be renounced?
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Dr. Alicia Halladay
He was the first, right. And he. Actually there was a combination of things. It was thimerosal and vaccines. It was all kind of mixed up together. But then other people kind of joined in. Right. So there were theories about whether or not the mercury in the vaccine bound to testosterone or somehow elevated testosterone levels, and that was the cause of autism. And so there were people around the country, at least this country, giving chemical castration to kids because they thought that would be the treatment for autism.
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David Remnick
Chemical castration?
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Dr. Alicia Halladay
Yes.
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David Remnick
What does that mean?
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Dr. Alicia Halladay
So it's a drug called Lupron and it completely depletes your testosterone. So the idea is that if you reduce testosterone, then the symptoms of autism would go away. In fact, it's not approved for that use. It's not even approved for use in kids. The people that were giving it had their medical license yanked from them. Actually, one of them is leading the new vaccine study at the nih, David Guyer. So it hasn't completely gone away, but at least people aren't supposed, you know, there's widespread, you know, kind of don't give your kid Lupron. This is not good for them.
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David Remnick
So recently Robert F. Kennedy Jr. Said that he is going to come out in September and tell us what the causes of autism are. What's that about?
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Dr. Alicia Halladay
So what we do know, and there hasn't been a whole lot of transparency, I have to say, so I'm just going off of different threads. We do know that he has strong interest in looking at vaccines. Right. So he's already. He's been doing this for years. He's been running this children's health defense fund. He has a strong bias in looking at vaccines. He's staked his career over the past 10 years on whether or not vaccines cause autism. He has hired David Guyer.
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David Remnick
Tell me more about David Guyer.
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Dr. Alicia Halladay
He was the one, he and his.
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David Remnick
Father, he's an autism specialist.
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Dr. Alicia Halladay
He Is. It's unclear. So his father was a obgyn who was the prescribing doctor for that Lupron project.
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David Remnick
So I think he lost his license.
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Dr. Alicia Halladay
He lost his license, but at the time he was the one writing the prescriptions for Lupron for those kids under the theory that it was high mercury levels caused from vaccines, not from coal burning power plants, not from anything else, but from vaccines that was causing autism by raising testosterone levels. So he was the one writing the prescriptions. David was the one who was doing the evaluations on the kids with autism. But he doesn't have a clinical degree at all. He has no formal training.
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David Remnick
David Guyer is not a doctor.
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Dr. Alicia Halladay
Not a doctor. He has no medical background. He has a bachelor's degree. Yeah, it's pretty shocking. And he got sued, right?
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David Remnick
Yeah, I agree.
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Dr. Alicia Halladay
So the families finally got wise to this and sued him. And then this all came out and they basically took away Mark Guyer's medical license and they find David.
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David Remnick
So what are they gonna tell us in September, do you suppose, and what's this all about?
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Dr. Alicia Halladay
Based on the fact that David Guyer has such a strong interest in vaccines, and because RFK has this predetermined idea that vaccines cause autism, the thought is, is that they are going to do some sort of study and publish some sort of data that in eight weeks over the summer.
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David Remnick
So we're thinking, and these arenormally, studies like this take years.
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Dr. Alicia Halladay
Yeah. So we're thinking we don't know because again, there's been no transparency, that they're going to use existing data. So there are databases in the United States that collect information about how many vaccines people get, what type of vaccines when they're administered. And then they do follow, you know, they follow people to different ages, that there is some of this existing data that has been collected over the years, that they're going to use that data and they're going to look at it and find something. What that something is, we don't know because everything has already been looked at.
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David Remnick
Now, as opposed to the vaccine theory, which again has been discredited, your own research finds that autism relates most to how brain cells are connected to each other.
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Dr. Alicia Halladay
Yes.
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David Remnick
Please explain that if you could.
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Dr. Alicia Halladay
These are things that can be influenced by genetics in the environment. And I want to say, when you say the environment, we have to think very broadly. You know, there's contextual factors, the neighborhood that you live in, what drugs you take, what medications you're on, what diet. So I want us, when I say environment, I am not talking about vaccines specifically. I want to be very broad.
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David Remnick
Nor is it necessarily the air you breathe or the water you drink.
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Dr. Alicia Halladay
It could be, but it doesn't have to be. So you have all these cells in the brain, they secrete different chemicals and they know to go to this part of the brain or this part of the brain, and then they know to connect to each other. And it's done through a complex interaction of electrical signals and also chemicals. So what we know about autism is that the way that these brain cells connect to each other is altered. It can be altered in different ways in different people. Some may have too many of one type of neuron, some may have connection problems in another type of neuron. They may have connection problems going over short distances in the brain or long distances in the brain. So that's what we know to be the core of autism, is connection differences in the brain.
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David Remnick
Let's say you're a parent or a sibling with a loved one who's got autism of one kind or another, and you're listening very carefully to this and it's registered with you. Okay, the vaccine theory is discredit. I get that. How do I think about the future of this research, what's possible and when? What is the state of play of autism research independent of all this sideshow, however central it's become? Yeah.
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Dr. Alicia Halladay
So I think if you're not focused on one thing, right, and you look at the bigger picture and you say, okay, what do we need to do? What do we need and how do we approach this? You keep a very open mind about genetic influences and environmental influences. Again, you don't, don't go, say it's this and I'm going to do a study to prove that it's this.
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David Remnick
And nor are you thinking in terms of a cure.
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Dr. Alicia Halladay
I think for some people, cure is an aspiration. For those, like, say, single gene causes of autism, I think gene therapies are proving to be very effective in other disorders like spinal muscular atrophy. So it has the promise, I don't know if cure. I think that people think of cure of different things. Cure would never be, you don't take.
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David Remnick
A pill and go to Harvard.
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Dr. Alicia Halladay
Exactly. You don't take a pill and go to Harvard. But if you can, if you or your loved one can sleep through the night, is that a cure? It can be a cure for some things if they are no longer having persistent, agonizing, intrusive thoughts. That can be a cure for something.
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David Remnick
Or self harm.
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Dr. Alicia Halladay
Or self harm.
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Jon Favreau
Absolutely.
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David Remnick
All the Many terrible things that can happen. What are your biggest concerns in these next three and a half years? When it comes to the intersection of politics and to give it a name, RFK Jr. But not only. And medical research and how we understand something like autism, what's the harm that could take place in the next three and a half years?
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Dr. Alicia Halladay
So what I'm afraid of is that we continue down this vaccine road, right? And people say, okay, I'm not gonna vaccinate my child, which has really horrific health consequences. We're seeing that right now in the Midwest and Texas. Right. But also they're gonna have a false sense of, well, my child's not gonna have an autism diagnosis because I didn't vaccinate. Right. So then they go on about their lives.
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David Remnick
So their vigilance is.
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Dr. Alicia Halladay
Their vigilance is misplaced. Right? So they go on about their lives, and their child does end up with an autism diagnosis and it's missed and services aren't received. And because the parents are saying, I didn't vaccinate, this is it. I'm done. Like, I've eliminated any probability. Right? So I think that is a big concern for me is that people lull into a false sense of security, thinking that there's one thing that they should have done that they did differently that is, you know, going to eliminate any probability. I think that that's one thing, and that's not even getting into. They're putting their child at risk for more like actual, like, measles if you're not vaccinating and you're getting on an airplane right now. And I feel very badly for parents of very young kids who aren't able to vaccinate right now because they're pretty much. It's roulette, whether or not they go into any place and get exposed to measles. So that is, in its own, a problem. But I also think that if we're so focused on this one thing, right? And it doesn't even have to be vaccines, it could be, you know, I get questions about things like mold all the time. If we just focus on one thing, then we're missing a lot of other things. We're missing genetic influences. We're missing progress in brain development. We're not thinking about.
- [27:45]
David Remnick
So you're saying he can both endanger kids and distort, at least temporarily, the course of medical research?
- [27:56]
Dr. Alicia Halladay
Well, I think in terms of the course of medical research, we're already seeing that. Right. So with whatever cuts are going on or whoever's responsible, Right. I see fingers being pointed all over the place. But studies are being shut down and research is not progressing. Scientific progress in all disorders, Alzheimer's disease, autism, cancer, diabetes, all of them is being slowed down significantly because of cuts that's already happening.
- [28:24]
David Remnick
And I have to tell you not to intrude too much personally here, but when things are bad with a kid with autism and they're not sleeping and they can be violent or self injurious or just freak out on the street and cause everybody to look at you like somehow you're being terrible to your child just a thousand ways that this can be painful and difficult. I think it's perfectly to be expected or logical that parents would, in their desperation and in their search for answers, sometimes go down the wrong track. And if they're led that way by people in authority like RFK Jr. The consequences can be horrific.
- [29:16]
Dr. Alicia Halladay
We're seeing that still. I mean, as much as we try to push out scientific information, I still get stories about people doing things like giving. And you know, these parents are desperate, but giving their kids these enemas with bleach in them because they believe that there's a parasite in their child's digestive system and they're gonna get rid of it with this particular enema. And they're desperate. I hear about people that are still using hyperbaric oxygen chambers for their kids autism, when in fact one of them exploded and killed somebody inside it. And it wasn't used for like, you know, it was used for autism. It wasn't used to depressurize after being in the sea for a long time, so.
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David Remnick
Cause I don't want to in any way sound accusatory. I just. It's as in the spirit of sympathy.
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Dr. Alicia Halladay
Yeah.
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David Remnick
To these parents who I am one. And it's really, really inexplicably hard.
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Dr. Alicia Halladay
It's really. I totally. I absolutely agree. And parents, you will do anything, right. To help your child. So if it means a bleach enema and you think that's gonna help them, you'll do it. And it's not because these people don't love their children. It's because they're desperate. And this is what has been shared with them on whoever, a friend, social media, wherever. It's a possible solution. And so they're gonna do it.
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David Remnick
You didn't think was possible that somebody preying on this desperation or manipulating it would be a cabinet member?
- [30:50]
Dr. Alicia Halladay
Well, no, I mean.
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David Remnick
And that's where we are.
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Dr. Alicia Halladay
That's a different level. We're at a different level with that.
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David Remnick
Dr. Halliday, thank you so much.
- [31:01]
Dr. Alicia Halladay
Thank you.
- [31:04]
David Remnick
Alicia Halladay is chief science officer of the Autism Science Foundation. This is the New Yorker Radio Hour. I'm David Remnick. See you next time.
- [31:16]
New Yorker Radio Hour Intro
The New Yorker Radio Hour is a co production of WNYC Studios and the New Yorker. Our theme music was composed and performed by Meryl Garbus of Tune Yards with additional music by Louis Mitchell and Jared Paul. This episode was produced by Max Balton, Adam Howard, David Krasnow, Jeffrey Masters, Louis Mitchell, Jared Paul and Ursula Sommer. The New Yorker Radio Hour is supported in part by the Cherina Endowment Fund.
- [31:52]
Chloe Mel
Hi, I'm Chloe mel, editor of Vogue.com.
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Cho Menardi
And I'm Cho Manardi, head of editorial content at British Vogue.
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Chloe Mel
Our show the Run through takes you behind the scenes at Vogue.
- [32:02]
Cho Menardi
Yes. With two episodes every week, you'll find out what's really happening inside the world of fashion and culture.
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Chloe Mel
Every Tuesday, hear from Nicole Phelps, global director of Vogue Runway and Vogue business, as she discusses the latest fashion news and speaks to designers and industry leaders that Vogue editors can't stop talking about.
- [32:19]
Dr. Alicia Halladay
There's so much shakeups happening in fashion. I'm curious what you think of this moment. Ooh, I am here with Marc Jacobs. Longevity is something we talk about a lot. It's not easy to achieve. How does it feel this moment?
- [32:35]
David Remnick
I have so much to say on this subject.
- [32:37]
Cho Menardi
And on Thursday, you'll hear from the two of us, Chloe Marle and Cho Menardi, as we share our thoughts on fashion through the lens of culture. From the Oscars to the Met Gala, plus conversations with the biggest stars right now. Tyler, congratulations on your first Vogue cover.
- [32:52]
Dr. Alicia Halladay
Thank you.
- [32:53]
David Remnick
Oh, my God.
- [32:55]
Chloe Mel
Join us to get your bi weekly fashion and culture news.
- [32:58]
Cho Menardi
Listen to the Run through with Vogue every Tuesday and Thursday.
- [33:01]
Chloe Mel
Wherever you get your podcasts.