What RFK Jr. Doesn’t Understand About Autism

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Robert F.

Kennedy Jr.

is very concerned about autism.

He has been for a couple of decades since he first became convinced that mercury and vaccines made children autistic, which, by the way, there is no credible evidence supporting this theory.

On April 16th, now as head of health and human services, RFK gave a press conference and he described the tragedy of what he calls the autism epidemic.

For years, he's insisted there is an epidemic, even though there's a lot of debate among researchers about this, all of which he dismisses as, quote, epidemic denial, a term he repeated several times in that press conference.

There are many, many other studies that affirm this.

And instead of listening to

this

canard of epidemic denial, all you have to do is start reading a little science because the answer is very clear.

And this is catastrophic for our country.

Catastrophic, he says, because a lot of families are suffering as they watch their kids struggle in life.

And it's true, a lot of families are suffering.

I'm Hannah Rosen.

This is Radio Atlantic.

There is a lot of confusion out there about autism.

Why it's increasing, if it's even increasing, and what even counts as autism.

And I think it's fair to say that RFK's strong and public entry into this debate has not in any way helped to clear things up.

So we're going to talk to someone who writes about autism, also covers politics for the UK paper The Independent, and is himself autistic.

Eric Garcia, author of We're Not Broken, Changing the Autism Conversation.

Eric, welcome to the show.

Thank you.

So, Eric, you covered that April 16th press conference that RFK held about autism.

Was there anything in his statement that stuck out to you?

Yeah.

You know, there was obviously the whole thing, which is that autism destroys families.

It's an individual tragedy as well.

Autism destroys families.

More importantly, it destroys our greatest resource, which is our children.

Saying that autism destroys

children or destroys families is so corrosive and it goes into the larger stereotype that people with disabilities are a burden.

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.

I hear him taking some of the most intimate and graphic details of autistic people's lives and using it as a pawn for spreading disinformation.

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.

And we have to recognize we are doing this to our children.

And I see him also taking

the real challenges that high support needs

people

and

making their lives seem like a tragedy rather than lives that are whole and worthy on their own.

This isn't to say that they don't face significant challenges.

They absolutely do.

But exploiting their experiences in such a

public way

in some ways almost bordered on pornography to me.

I want to get into RFK's actual ideas about autism.

Sure.

Let's start with the idea that there's there's an autism epidemic.

This is something he's been saying for decades.

It's a critical part of his argument.

It's the assumption from which everything else flows.

There is an epidemic, so we have to get to the root of it and do something about it.

So I'm going to do something that's not that podcast friendly, which is look at what anybody listening to this podcast could do, which is Google the term increase in autism diagnoses, increase in autism.

Yeah.

And you'll see, can you describe what you're looking at?

Yeah,

it's known kind of like as the hockey stick.

Yeah.

What you see is you see that over time there was an increase in diagnoses.

So like it says that like something like one in 10,000 kids in the past had an autism diagnosis.

And then over time, that junk number just increases and increases and increases and increases.

And it makes it look like on a very surface level, with a very surface level understanding that this is an epidemic.

Right.

And I want to pause here because I feel like this is very confusing to people.

Anybody can Google these charts and pretty much any year you start in.

Yes.

So there's a chart that shows California.

You can start in the 40s and 50s.

Basically, nobody has autism.

And then it's around the year 1990 when it starts to lift.

Correct.

And then you get to 2020 and it like booms into the sky.

Now, you can do this about Northern Ireland, California, Sweden.

Oman, China.

Oman, China.

I mean, basically,

everybody would look at these charts and here RFKs say there's an autism epidemic, and it makes some kind of sense.

And I think it's really important to pause here because that's what a lay person who knows nothing would pick up.

It totally makes sense that on the surface, it looks like there's this spike.

But you have to remember, of course, autism didn't get a separate diagnosis diagnosis in the Diagnostic and Statistical Manual of Mental Disorders until 1980.

It didn't get one.

Then you got what was then called Osperger syndrome, thanks to the research of Lorna Wing in the United Kingdom.

Then in 1994, which was the year that my parents started screening me for things, you got,

I believe it was PDDNOS, pervasive developmental disorder, not otherwise specified.

But,

you know, it was this gradual improvement

and broadening of the spectrum.

And then in 2013, what happens is the American Psychiatric Association, which publishes the DSM, puts all of these diagnoses under one umbrella as autism spectrum disorder.

And there are levels.

There's level one autism, which is people who can speak in full sentences, but might have difficulty with sensory processing or might have difficulty with social interaction.

Then there's level two, where they might be able to speak in smaller sentences or smaller words.

And then there's level three, which is where they need, you know, I think the

classic

around the clock

care that we typically associated with autism.

We still associate with autism and we shouldn't erase those people.

But I think that it's important to remember that the diagnostic criteria was changing at the time.

Right.

So all this broadening of the diagnostic criteria, all the stuff you're describing, that explains a lot of this sudden rise, what RFK is calling the epidemic.

Yes.

You know, this is around the time that people with disabilities received more rights.

The ADA was passed in 1990.

And it's important to remember that even though autism wasn't really mentioned in the ADA, it was mentioned specifically in the

Individuals with Disabilities Education Act.

And that just meant that you saw more,

you know, you saw an increase in the number of children being served who had what we now consider autism spectrum disorders.

So it's kind of this strange marriage of science improving and government policy causing a windfall.

So it was easy, I think, for people to look at those numbers and say, epidemic.

Right.

And the obvious question is why.

Now, RFK seems pretty certain

about what the cause is.

Within three weeks, and probably we're hoping in two weeks, we're going to announce a series of new studies

to identify precisely what the environmental toxins are that are causing it.

This has not been done before,

and we're going to do it in a thorough and comprehensive way, and we're going to get back to

an answer to the American people very, very quickly.

By the way, Eric, it's been like two or three weeks and that report never came out, at least not yet.

But the important phrase to me in that is precisely what environmental toxins are causing it.

Not if environmental toxins are causing it, but which ones.

Right.

So

what does he mean by that?

he's basically concluded despite this openness he has to doing research that the cause of autism is environmental toxins what is he referring to uh this is something that's been talked about for a long time which is that environmental toxins have contributed if not play a major role in

in the increase in autism rates uh and then the other major culprit is of course vaccinations and particularly the MMR vaccination the measles monks rubella vaccine

and that has been debunked debunked multiple times.

The guy who put out that study, Andrew Wakefield, had his medical license revoked in the United Kingdom.

And the study that was put out in 1998 was retracted in 2010.

Right.

So, okay.

So we have pinned down what RFK believes.

This is an environmental toxin.

Let's get to the root of it.

Correct.

That's his belief.

And he happens to be the secretary of the HHS.

So his belief holds some weight right now.

Yes.

Now let's shift from what he believes to

what the scientific consensus and the world is saying versus what RFK is saying.

When were you born?

I was born in 1990.

1990.

Okay.

That's a critical year because it's just around the period that everyone pinpoints to when autism started to explode.

Yes.

What is your experience as a child, growing child of how people are talking about autism?

This is a really interesting, it's funny.

The way that my mom says it is that, so we were living in Wisconsin at the time and she read this this ad in the paper for like free pre-K screenings this is like in 1994 94 95 they couldn't pinpoint but they said there was something quote unquote wrong with me or there was something like I wasn't hitting the marks but you have to remember of course you know there's always a lag in scientific understanding like when something is established you know officially versus like when it you know enters our bloodstream so to speak or you know in Shazz Zeitgeist so they didn't but they were like well he's verbal he can speak so we don't know if that's autism things like that And then what happened was we were, we moved to the, we moved to Sacramento.

And

what just so happened, and according to my mom, is that, you know, she was trying to get services, things like that.

They say he's fine.

There's nothing wrong with him.

It's weird.

Like in Wisconsin, they're like, he's something's, something's quote unquote wrong.

And then in California, it's, there's quote unquote, there's nothing wrong with him.

And then it just so happens that my dad's boss,

wife happened to be like the head of like special education for the entire region.

So like, that got me like an in.

And then, what happened is we were living in, uh, is that after we're removed to San Antonio, Texas, and there was this one doctor who I guess had been researching autism for a while.

So, it's it's and then they were like, Well, this is what it's called, this is Asperger's syndrome.

And then, like, I started, and it's funny because you know, when you hear this term Asperger syndrome, it's like you can imagine the kind of jokes that are made on the playground at the time.

And, you know, it was funny because

my diagnostic journey kind of matched the science and the public understanding as it was coming.

So, the scientific consensus and Derek's life seemed to show that a major reason autism is quote on the rise is because of improved awareness and access to health care.

But within the autism community, there's a lot less consensus about what RFK is saying and what should be done next.

That's after the break.

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RFK is not the only person, though, who believes

that this isn't just about diagnoses.

Correct.

Right.

So there are legitimate scientists who would say, oh, it's not just a matter of we're capturing more people.

There is something going on.

Yeah.

So I want to talk about that for a minute.

Even RFK agrees that autism has a genetic component.

Like studies of identical twins have shown that they are more likely to both be autistic.

What other factors have people found

have contributed to autism since the 1990s?

Yeah, there have been talks about how, like, you know, parents having children older is

the age of fathers is one of the things.

There's talk about mutated sperm.

You know, so there, so there, there definitely is some discussion.

And, you know, and I should note that the United States spends so much money on researching autism and like a large chunk of that research of the projects we the United States government and nonprofits fund are about biology.

So what in your mind is the problem with RFK calling it an epidemic?

The problem with RFK calling it an epidemic, in my opinion, is that it treats it like it's a crisis.

It treats it as if it's something to be fixed or something to be mitigated and something to be stopped.

And when we already spend so much time researching the biology and researching, and I'm not necessarily even opposed to researching biology, I think it could be worthwhile.

I think it could lead to scientific breakthroughs.

It could help with finding ways to treat co-occurring conditions like epilepsy.

A lot of autistic people die from epileptic seizures, but like treating it as a crisis and treating it as something to be fixed or prevented is corrosive to a lot of families.

It's corrosive to a lot of autistic people.

It puts the blame back on parents.

And it focuses more on fixing this issue rather than

accommodating and giving services to Autistic People when the pie is so scarce.

You know, this is the same administration that, you know, is trying to cut Medicaid.

Right.

So when you're standing and listening to RFK say things like this, to you, the message is

something about me needs to be fixed.

Yes.

And something about a large amount of people needs to be fixed rather than these are people who are human beings who need services and who need support and who need acceptance in the world.

I want to talk about how RFK's statements have opened up and exposed certain rifts inside the world of autism.

Recently, a mother of an autistic child, Emily May, wrote an op-ed in the New York Times, which was called Kennedy Describe My Daughter's Reality.

She writes, When RFK Jr.

said in a recent press briefing, the same one we've been talking about, that autistic children will never pay taxes, never hold a job, never play baseball.

Many people in the autism community reacted angrily.

Probably you did, Eric.

And yet I was transported back to the psychiatrist's office and the bleak prognosis that my child might never speak again.

I found myself nodding along as Mr.

Kennedy spoke about the grim realities of profound autism.

Can you explain what this divide is about between, say, a community that you represent and this parent's community of children who she describes as profoundly autistic.

Yeah, first off, I should say, and

I want to be as careful as I can with this.

Sorry, I don't want to make too many people mad.

It's important to remember that a lot of parents of high support needs, autistic kids disagree with Emily, and a lot of people agree with her.

In fact, Emily and I were DMing before that article came out.

And, you know, the thing that I would say is that so that that term profound autism, that is an ongoing debate that's going on right now because the Lancet in 2021, 2022, put out a commission arguing that there needed to be a separate label called profound autism for those kind of, as I mentioned, level three autistic people or what we would call high support needs.

And their argument is that the diagnosis of the spectrum is too broad and that creating the 2013 diagnosis of ASD

erases the needs of some people, of those high support needs people, and folks like myself are

occupying the conversation.

Is that because you can speak for yourself, whereas a non-speaking child cannot necessarily speak for themselves?

Yeah,

that's their argument.

And so they feel like they've been made invisible now.

They feel like they've been made invisible, and I think that they feel like the

while we've been highlighting a lot of the accomplishments of people like myself, that we're ignoring their needs.

And the thing, and the ironic thing about it, and so there's this idea that there's a need to create a separate labor, profound autism.

And a lot of autistic self-advocates, including some non-speaking autistic self-advocates, argue that this is,

that this would just add to stigma.

And that by labeling someone as profoundly autistic,

that would lower expectations.

It would say that they would never be able to achieve all those things.

And the thing that I would say is that a lot of times

my overtour, my,

you know,

I'm not an activist.

I'm a journalist.

I'm a writer.

I write about autism, but I'm not, I don't advocate for a policy thing.

But my overtour and my olive branch and my fig leaf is the people who are on the front lines advocating for your kids.

are those same speaking autistic advocates and those same self-advocates.

It's funny when I was

one when I was interviewing Julia Bascom, the former head of the Autistic Self-Advocacy Network, she has in her office one of the signs that they made for pushing back against the repeal of Obamacare saying, please don't cut Medicaid so we can stop making, so autistic people have to stop making phone calls.

They are on the front lines this time to prevent the cuts to Medicaid that Republicans want to do, that RFK's administration, the Trump administration wants to do, and House Speaker Mike Johnson wants to do, and Republicans in the House want to do.

I see.

So you're saying you, as a a speaking autistic advocate or writer are not making a distinction between high needs not high needs you're just out there raising awareness for autism more broadly whether it's for her kid for yourself for society just to generally understand autism and i'll say this i'll i'll say this this is just this is what i this is what i would say and i i mean this from the bottom of my heart and forgive me for being i don't know how emotional i could be in this thing as much as you want is um

i think meeting other autistic people, including high support needs, non-speaking autistic people, helped me learn about myself.

You know, I think about how when non-speaking autistic people,

for so long, they're diminished and people write them off as not worthy or not valid.

I'm reminded when I was called a retard in elementary school.

And so what I would say to them is that like, I don't don't know what it's like to be not speaking autistic, but I do know what it's like to be overwhelmed and overstimulated in a world that doesn't, you know, I didn't drive, I don't drive, I didn't drive a car to get here because I can't drive.

Some autistic people can drive and God bless them.

I just can't.

It's overwhelming, sensory overwhelm, sensory overload.

And I guess what I just want to say is that like, I know, I don't know exactly what it's like, but I've learned so much from your kids.

And I've learned so much.

And I've learned how similar we are.

And I've learned how, even though there are still very big differences, that they deserve to be treated bad and that if I fought so hard to get my voice heard, my God, the reason why I try to interview non-speaking, it is so important in all of my books and all of my writing to include non-speaking voices because my God,

I want their stories told and I want them to be heard.

And so.

Isn't that what RFK wants?

Like, what's wrong with his approach to non-speaking Autistic Kids?

Like his bringing this to light?

What's the difference between what you want and what he wants?

I think what I want is, I think the difference, because there, believe it or not, is some overlap, is that he sees this as a tragedy to be fixed.

I see these as people who deserve everything possible.

We're probably always going to have autism and we're always going to have autistic people with us.

So what do we do about it?

How do we serve these people?

How do we see them as full human beings who have needs and wants and concerns?

And how do we fix the gaps so that the

actual impairing and disabling parts of autism are addressed and mitigated?

And how do we help them to live good and happy lives?

Well, Eric, I feel like that is a beautiful place to end.

I really appreciate you coming and talking to me about this.

Hannah, I really appreciate you having me here.

Thank you.

This episode of Radio Atlantic was produced by Rosie Hughes and Janae West.

It was edited by Claudina Bade.

We had engineering support from Raps Merciak, fact-checking by Yvonne Kim.

Claudina Bade is the executive producer of Atlantic Audio, and Andrea Valdez is our managing editor.

Listeners, if you like what you hear on Radio Atlantic, you can support our work and the work of all Atlantic journalists when you subscribe to the Atlantic at theatlantic.com/slash listener.

I'm Hannah Rosen, and thank you for being a listener.

Talk to you next week.