When Fear Spreads Faster Than Facts – Autism, Vaccines, and Measles

Maggie Fox  00:01

Hello and welcome to One World, One Health, where we chat with people working to solve the biggest problems facing our world. I am Maggie Fox. This podcast is brought to you by the One Health Trust with bite-sized insights into ways to help address challenges, such as infectious diseases, climate change, and pollution. We take a One Health approach that recognizes that we are all in this together, and everything on this planet — the animals, plants, people, and the climate and environment — are all linked.

The new U.S. administration is bringing up the whole question of autism and its causes again. Health and Human Services (HHS) Secretary Robert F. Kennedy Jr. has a history of claiming there’s a link between the measles vaccine and autism and says he wants to get to the bottom of the steady increase in autism diagnosis in the U.S. and the rest of the world.

Many experts say better screening and diagnosis explain much of the rise. Genetics appears to play a role as well. Many, many studies have shown no link at all between vaccination and autism. Yet Kennedy and his supporters, as well as the people he appoints to government positions, continue to question this science.

In this episode, we’re chatting with someone who’s dedicated her career to studying and treating kids with autism. Dr. Judith Miller is a psychologist and senior scientist at the Center for Autism Research at the Children’s Hospital of Philadelphia. She’s also an associate professor at the University of Pennsylvania School of Medicine. She’s an expert in diagnosing autism and has studied potential early interventions.

Dr Miller, thank you so much for joining us.

Judith Miller  01:43

You’re welcome. Thank you for having me.

Maggie Fox  01:45

You must have been startled when the new HHS Secretary was appointed and started asking these questions about autism that had been asked and answered over and over and over again.

Judith Miller  01:59

Yes, it did feel like we were going backwards in time. I was in graduate school when Robert F. Kennedy Jr. was first sort of really espousing this, and when the  Wakefield paper came out, people were talking about whether vaccines cause autism, and I thought we had put that to rest. Many very rigorous studies have demonstrated that’s not there’s no association between vaccines and autism.

Maggie Fox  02:24

And you’re not convinced that he cares about autism per se.

Judith Miller  02:31

Well, I’m concerned that he doesn’t know anything about autism. I don’t want to say whether he cares about it or not. It’s everything he says, suggesting that he doesn’t understand what it is.

For example, he’s been making this claim about autism and vaccines for more than 20 years, but in his recent statements, he says things like “People with autism don’t pay taxes and they don’t use the toilet independently, and they don’t date,” and it just suggests that he might not have met anyone with autism before he mispronounces words that are widely used in the autism community, like he was calling Asperger’s syndrome something like “Aspergese syndrome.” So, it just suggests he’s not having conversations with people. He’s not talking to people with autism, and this is concerning because there is so much information about autism in the world.

Some autistic adults are so accomplished in their fields; they are world celebrities and examples of autism. There is an entire television series dedicated to showing autistic people dating. There are scripted shows about autistic people crushing it at work and doing amazing things in the world, and, you know, demonstrating all their strengths and challenges they have. So, it doesn’t seem like he knows that. It doesn’t seem like he understands the difference between autism and intellectual disabilities. I just wonder if an average person in America might know more about autism than he does.

Maggie Fox  03:59

He’s very concerned about finding the causes of what he calls an “epidemic of autism,” right? He says there’s an epidemic, and there’s no way that an epidemic could be caused by something that’s almost certainly genetic. He makes it sound like it’s got to be caused by some new environmental factors.

Judith Miller  04:16

The term epidemic doesn’t fit with autism. Autism is not contagious. It’s not a disease. So, the science we have of autism is that it is largely genetic. There have been over 100 genes that have been implicated, and they may confer a risk that interacts with something in the person’s environment, and we should be studying large populations in order to find what those risks might be.

So the power of a very large study is that even if something happens in just a small number of people, or there’s a small association, that large sample is going to give you the power to find that, even if it’s a really small finding. What we know from these big population studies is that it’s largely genetic, and things that interact with that might be things like maternal and paternal age, particularly paternal age, give you a small increased risk of autism. Certain medications that you could take during pregnancy, like if you take valproic acid, there’s a small increase in your risk if you have a baby conceived by in-vitro fertilization, or a baby in the neonatal intensive care unit, things that suggest there are other things that might be creating challenges for the baby.

There’s a higher risk of autism, so there may be environmental causes, but if there was something clear, such as a vaccine or a pesticide or a wavelength from cell phone towers, that would become overwhelmingly apparent in a population study. Even if you didn’t know all the variables you wanted to study, you would see some signal that would point you in the direction of some broad environmental exposure. And we just don’t have any of that.

Maggie Fox  05:55

So, Robert F. Kennedy, Jr., says he wants to start this autism registry, or now he’s changed that, and he says it’s a data platform to find the so-called “Real basis for autism.” Why would that not be something useful? Why don’t we need that?

Judith Miller  06:12

People should know that we study databases all the time. So, the idea of creating a database is not new. There are publicly accessible databases that scientists use all the time for healthcare utilization, and there are databases that families and individuals with autism contribute their own data to. So, the idea of a database is not new.

I think what’s concerning is that he doesn’t seem to understand some of the privacy things that go into establishing a research database. When he talks about combining healthcare, records wearables, and data from tech companies, on the surface, when you say things like that, you sound like you are about to violate every rule about privacy we have in healthcare, in the U.S. And that is concerning because it suggests that he doesn’t even understand that those things are real, and those things are barriers because of the things that he claims, and the fact that it’s difficult to find real science that he follows like there’s been so much good science that he does not follow.  Even though he says he wants to follow science, he doesn’t seem to follow science.

The idea of him having control over people’s data and private information, he doesn’t have a track record of being a steward of science as a foundation. So, I think that it would be very concerning to people what he would do with it, because he doesn’t act like a steward of people’s health.

Maggie Fox  07:38

It seems that maybe people might be scared and start pulling out of treatment because they’re worried about losing their privacy.

Judith Miller  07:44

Yeah, that’s a real possibility. When his statements came out, we and many other groups around the country started getting phone calls from parents. They had a lot of questions. They wanted to know what this meant, and was their data was getting put into this. He has now walked back some of his ambitions for this database, but he has not asked for any of this data.  So, nothing illegal has been asked of organizations that I’m aware of. But yes, it concerns parents, and we are worried that it could take a long time before parents feel comfortable before some parents feel comfortable again with either getting a diagnosis or participating in research.

There’s a saying that “It takes 10 minutes to create a vaccine scare and at least 10 years to overcome it.” And it may be the same in this, you know, it might take a passing comment from him about creating a database, and it may take years before people feel comfortable with autism research again, which is unfortunate.

Maggie Fox  08:39

Well, that was going to be my next question, because it has been so long now. I remember it goes back more than 25 years when researchers started first trying to show that the measles vaccine absolutely did not cause autism, and the studies were done over and over and over and over again to appease the vaccine critics and skeptics, but it’s now been more than an entire generation and people have forgotten, is there a blank slate again? Do people have to be convinced once again because of all of this?

Judith Miller  09:12

Maybe! I mean, it’s really unfortunate, or people just need to be educated about all the science that was done in this area. The scientific community took this really seriously 20 years ago, and they really conducted a lot of very large and well-designed studies on large populations. So, if there was any association, they would have found it. I hope we are not about to spend any more money on this. It could make sense to re-educate people about the science that has already been done, but spending more money on this would be really detrimental. It would not further our understanding of autism, and there’s no reason to do that when you have such clear and overwhelmingly consistent findings on this topic.

Maggie Fox  09:57

So, it is true that the number diagnosed with autism cases does increase over time. The latest figure from the U.S. Centers for Disease Control and Prevention is 1 in 31 U.S. kids, and that’s up from one in 36 at the last measurement. What might be behind the increase?

Judith Miller  10:17

That’s a great question. So, a lot of things, and probably a lot of things, all happening together. So, we know that we diagnosed autism better than we used to. We recognize it more, and that is a big part of it; it is everything- I don’t think so, but it is a big part of it. So, I don’t want to say it’s all of it.

Several things have made it easier to identify. We’ve broadened the criteria, not just to include autistic individuals who are bright and who have a high IQ, but also even among those with an intellectual disability. We’ve broadened the definition, so a lot more people with intellectual disability also now meet the criteria for autism. So, it’s broadened across the entire spectrum of levels of functioning.

Also, people are more aware of it. We’ve reduced a lot of stigma.  We now have very positive portrayals of autism in the media. People have embraced the idea of neurodivergence as not necessarily a bad thing. It’s a different thing. Some strengths come with autism along with some challenges, but there are definitely some strengths, just like there are other neurodivergence such as attention-deficit/hyperactivity disorder and other things, we also have a lot more information about treatments that can work for helping autistic kids learn how to communicate and learn how to participate in school.

So, 30 years ago, there was nothing we could offer families to help their autistic children participate in the classroom, and now we know how to do that. When I was in graduate school, the consensus was that half of the people with autism would never develop functional speech, but now we know that 80 percent of people with autism will be fluent speakers. So, we know how to teach communication. We know how to incorporate alternative and augmentative communication devices when needed. We know how to help kids with autism take turns and play games and participate in the classroom and demonstrate all their knowledge in ways that we just aren’t happy with, so there are a lot of good reasons to identify autism in a child because it will inform what you can do to help that child.

Maggie Fox  12:16

So, do you think all this political stuff is distracting from the kind of research that needs to be done to help people and their families?

Judith Miller  12:25

Yes, I think it is a distraction, because I would welcome studies on what might cause autism, and I would welcome studies on how to make our health better; all of those things would be good. We would learn really interesting things about the brain. We would hopefully learn how to make life better for autistic people who are impaired and struggling, but the comments that are being made, and the idea of the database and the idea that vaccines cause autism when there’s so much evidence that it’s not, is forcing us backward, instead of bringing people together to say, hey, what’s the next level of knowledge We can get to in autism. Where’s the next frontier in research and service?  We must explain what autism is and reassure people that with autism, they are cared for, and the things that we must explain in 2025 are going backward. We should not have to justify that science is real and that good studies from the past are believable. So, it is a distraction.

I think the current conversation is also dividing people. Should we study autism, or should we be supporting autistic people? And we need to do both. It’s disingenuous to say that you care about autism, that you want to find the cause, or that you want to find a cure, while you’re also refusing to provide the support and services that autistic individuals and their families need. So that should not be a choice that is forced upon the autistic community. You can either study it for future generations or you can serve people now. We need to be able to do both, and we can do both, and we should do both.

Maggie Fox  14:03

Dr. Miller, thank you so much for taking the time to chat with us.

Judith Miller  14:07

You’re welcome. Thank you for having me, and thanks for your questions.

Maggie Fox  14:11

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