Reporting from the U.S: "There’s an epidemic of diagnosis. There’s an epidemic of autism. They’re one and the same"

Hey everybody. Welcome back to The Reporters, after a hiatus. We have a slightly different format today. I have the pleasure of being able to host our guest this week, Alan Zarembo, here at the actual studio of The Reporters, which is my office.

Alan Zarembo, welcome to The Reporters.

Thanks, Scott. Good to be here.

Alan is an old friend. We’ve known each other for many years, going back to our days at Newsweek together. Alan was the Mexico bureau chief for many years, and I replaced him there. And then he went on to an illustrious career at the Los Angeles Times for more than 20 years, where he was a science reporter, features writer, enterprise reporter, investigative reporter and ultimately became the foreign editor.

Foreign and National.

Two hats!

But unemployed as of a month ago.

Right.

By choice.

So he's off on a European vacation of sorts.

You should all visit Chateau Johnson if you can.

So, very happy to have Alan here in studio and I hope to have more guests in this format because it's a different setup and it's pretty cool so far. We're gonna be talking about a story that he wrote back in 2011, which is newly relevant today. A four-part series that appeared in the Los Angeles Times. It probably still today stands as the most in depth and comprehensive look at autism. It explores this very complicated topic from a number of different angles. It's newly relevant today because we have as health secretary Robert Kennedy, who is a notable vaccine skeptic and somebody who has promoted the idea that autism is caused by vaccines, which is a debunked theory.

[Last week] Kennedy said that they're quickly going to get an answer to this question of what is causing the explosion in autism cases, which really started in the early 1980s and then quickly accelerated through the 2000s and is still growing. The percentage of kids who have an autism diagnosis is still going up. [Note: A recent NYT has a piece on this very topic.) And that's exactly the question that my series was looking at. What is causing this huge increase in numbers? It went up like 20 times between 1980 and 2000. And by the time my series came out, it was about 1 % of kids nationwide, about one in a hundred. And I think it's even much higher than that now. The current number is like one in 36 even.

(photo credit: Francine Orr)

This story starts way back to the 80s and even before. In fact, I think you talk about the first autism diagnosis was in the 40s, if I'm not mistaken.

The guy that discovered autism, if you want to call it that, was a psychiatrist named Leo Kanner. Autism was a much different thing back then. It was a very severe disorder of social skills and communication. Classically, people couldn't even speak. And of course, that's changed quite a lot, which is sort of the key to the series. Now, you mentioned vaccines, which was a very big issue for a long time.

There was a British scientist who was putting forth the idea that this huge explosion in numbers was the result of the vaccine itself or one of the additives in the vaccine called thimerosal. And that could never ever be shown. But I wanted to take a very scientific approach to this question. And it was a very charged, it's still a very charged, topic. It's got a very strong activist community around it, which is understandable. These are parents who are trying to figure out what is wrong with their children.

Set the scene for us because we're gonna get into the story and we're also gonna talk about the journalistic implications and what it was like for you as a reporter. What was the conversation around autism and also what sparked your curiosity and why did you decide to do the story in the first place?

I started thinking about this around 2009, 2010. We were seeing these massive increases in cases. We were seeing huge increases in spending on autism. There was a lot of mystery around what was causing this. There were groups that [blamed] vaccines, but perhaps other environmental factors. I wanted to take a cold hard look at this. I was an investigative or explanatory science writer back then. I started looking at data, which is always a great place to start with this kind of thing. I was looking at school districts in California, their autism caseloads. And there was tremendous variation in the rates of autism depending on where you were in the state. So right away that was a really interesting mystery, a starting point for me, trying to figure out: what's going on here? Is there something in the water in the cities that's causing this, or is it something else? And I [explored] this idea that maybe it wasn't so much a change in the biology of children of kids but maybe it was a change in the way we were classifying kids. So that really became the driving idea. I went into it with a very open mind.

I've always tried to sort of employ the scientific method when it comes to reporting. Whether it's political reporting or science reporting, there's a real danger of confirmation bias. It's okay to have a theory, but then test it. Look for all the evidence against it. Just to tell you the big picture here, all the evidence was pointing to a huge change in the way that we were classifying kids, that the definition of autism had changed and the way we looked for it had changed, and there were all kinds of implications for the help that kids could get.

Autism wouldn't be the only diagnosis that has sort of come into fashion. Diagnoses come and go. There are social factors in how this stuff spreads. It was a complicated topic.

You're starting with this question, which I think from a process standpoint is really interesting: Why are the rates higher in let's say Orange County than they are in the Central Valley? Or why are they higher in areas that are maybe wealthier or have different demographics. Did you immediately have any ideas?

I just started talking to lot of researchers about this and found some really interesting people who've studied this in a serious way. My series was not ruling out the idea that there could be some environmental factor. Most likely, there is something that interacts with genetics, but it's not clear that that's what was changing over time, that could be driving these rates.

Scientists have known for long time that there's a strong heritability of autism. If a parent has it, then the kid is much more likely to have it. But researchers have looked for environmental causes and they just haven't been able to find specific things. There was a researcher at UC Davis who looked at these clusters and just could not find anything that could explain them. Another researcher from Columbia came along and he was able to show that your odds of having autism were much higher if you lived near someone with autism. It wasn't that autism was spreading. It was word of mouth, parents talking to each other.

I don't want to suggest that autism is not real or that people were playing the system or making this up or that these kids did not need help. I want to be really clear about that. What the evidence suggested was that we as a society had dramatically expanded kind of who falls under the umbrella of autism. There's no blood test. There's no simple test to know if someone has it or doesn't have it. I would often be asked by the editors in this whole process: Well, does this kid have autism or not? I’d say you're kind of missing the point here. He has autism if a doctor says he has it.

If you look in the DSM the definition has changed with each new edition, including the latest edition. You have to meet certain thresholds for these characteristics in this category. In the new conception of autism, the way it's being diagnosed now, it's being expanded. These are kids that would have been in the past classified as mentally retarded. That itself was a diagnosis that the Kennedys popularized. Autism is a more hopeful diagnosis for parents who have kids that are really cognitively impaired.

On the other side are these really high-functioning kids. It's a spectrum, they call it the autism spectrum. We all remember them from when we were in school. You and I are about the same age. I remember kids in my school that didn't speak much, they were socially awkward, they were geeky, you know? I was a little geeky. Bill Gates was a little geeky. He even has said that he probably would have been diagnosed with autism if he was a kid today. All these people can use help. But that brings me to the second point of the series, which was the public money that was being spent on it and the way it was being spent.

Because while all these kids could use help, it was extremely uneven in who was getting help. There were some serious policy questions about how you should deal with this. One of the pieces [in the series] was about the industry of therapy for autism, which is a multi-billion dollar industry.

You can understand for parents who are desperate, they want everything, they want to do everything they can for their kid, even if the evidence for it is not great, which is the case in some of these therapies.

You start the story with this lede: A mother is worried about her son who is exhibiting some symptoms and she doesn't totally understand how to deal with them. She's worried that there might be something wrong. So she enters this world of autism diagnosis. What were your concerns as a reporter going into the story?

I was trying to talk to as many families as could. I wanted to capture the spectrum. I wanted to talk to as many people as I could across different socioeconomic backgrounds. The case that you're mentioning was up in the Central Valley.

I’ll just back up and say: This was one of the hardest stories that I've ever done. I had to convince a lot of people, persuade a lot of people, to talk to me. Families who are very vulnerable. What could be more important than their children?

But ultimately, I'm not writing for them. As a journalist, you're writing for the readers. And ultimately, the story is not their story. The story is your story. And so once you gather up all of the reporting, you've got to step back and say, what does this mean? What is the message here? What's important for the public to know? And sometimes this can come into great conflict with the people you've interviewed. You have to convince these folks to invite you into their lives and trust you. And I did that. And then there were times I felt so worried about the way that they were going to be portrayed in the story. And so the questions of getting the right tone, questions of fairness, these became things that kept me awake.

“Vaccines are not completely safe. They’re a social contract — you accept a little risk for the good of society.”

I would wake up in the middle of the night and feel like I don't even want to do this because I can't hurt these people. I'm really worried that I'm going to hurt these people. I'm going to be honest about their stories but they might not look great.

There was one woman. Her kid had some issues. She knew that getting an autism diagnosis would give him the best chance of getting some help. The school was going to test him. She purposely, the day of the test, did not feed him breakfast. She wanted him to go to the test hungry and perturbed and tantrummy.

She wanted them to see the kid at the worst to maximize the chance and she told me all this. And I'm like, this is going to be in the newspaper. Hundreds of thousands or a million people were going to read this.

Did you tell her?

Of course. It took a long time to kind of figure out how to organize my material. But yes. One of the things I did with everybody was tell them how they were going to appear in the story. I didn't read them the stories, but in some cases I would read quotes or just summarize the context for them.

One of the really, really stressful moments in this was about the so-called warrior parents. One of the things we found, just to back up here for second, was that the people that fought the hardest for help for autism got the most help and the most money was spent on them. There's a lot of public money in California, in particular because there's a whole developmental disabilities system that guarantees help for kids, and actually adults too. Autism is one of the main categories and the fastest growing category. Federal law requires accommodation in schools for kids with these kinds of problems.

The resources that you can get if you have an autism diagnosis are considerable, including aids that accompany you to school and help you through daily activities. I was amazed reading the story at just how extensive the help was.

I mean, that is the prize — a 40-hour-a-week private aid that travels around the school with your kid, coaches your kid during class. LAUSD is a vast school district, the second largest in the country, and there are vast economic differences depending on where you are in the city. It's not surprising that kids from the wealthiest part of the city are the ones getting the most help because their parents have fought the hardest. So to bring this around to this family I'm talking about, they had a severely autistic kid and had fought like crazy. It was admirable how much they had fought for him. Whether that help was actually working is another question, but they needed to believe that it was going to work. They needed to know that they tried everything that they could. I added up the cost of their help for their child and it was $300,000 for one child who, from all that I could see, was probably never going to have a so-called normal life.

“It wasn’t so much a change in the biology of children — it was a change in how we were classifying kids.”

I was going over the story in the final hours with this family. I spent so much time with them. I said, you know, the story is going to say, as a measure of how much you fought, [this is] how much these services were worth. And she, the mother, freaked out. She said: I'm going to look like I'm playing the system, I'm going to look greedy. And she said: I don't want to be in the story. This is like a week to go to publication.

That's kind of a nightmare.

Well, these are people's lives, right? But I'm very committed to the story at this point, and I feel like I've been fair and the story is not wrong. She's worried, and I think kind of rightly, about how she's going to look. Because this is the betrayal. This is like the Janet Malcolm moment — Janet Malcolm, the famous New Yorker writer who said that fundamentally journalism is an act of betrayal. You earn people's trust and then you betray them because you might not tell the story that they want.

Right. Your loyalty has to be to the story, to the page, to the truth insofar as you understand it and not to any one individual or group of individuals because in that case you would betray your obligation to journalism and you would become an advocate.

Yeah, we're not activists. We're truth seekers. I mean, ideally, right? That's a whole other... But, you know, the story was about to come out. It was all written.

So how did you handle that?

I tried to portray the dollar figure as a measure of their devotion to their kid and that the tone of the story would do its best to reflect this. It wasn't like she was trying to take resources from a poor kid who might've needed the help.

Ultimately, it wasn't me though who convinced her to go ahead. It was Francine Orr, who was a photographer, who I worked with through this entire project. One of the best photographers I've ever worked with. And Francine had spent even more time with the families than I had. I think she might have spent some nights at their house.

And I called Francine and said, this mom is freaking out and can you help? And they had spent so much time together. And I think it was Francine that talked her back. I'm super grateful because I think that was probably the strongest component of the story.

The story led with this family, but it was a deep dive into the data and the deep disparities in who was getting this kind of assistance. LAUSD in particular was like a laboratory for this kind of stuff. I had done all kinds of records requests and data requests and exactly who had a private aid and how much they cost and so I was able to really take this apart.

At one point you talk about how autism rates in Iowa or somewhere else were something like a tenth of what they were in Minnesota and presumably the same discrepancies can be found across the country.

I haven't followed this enough recently to know how things have changed, but what I do understand is that some of these gaps have narrowed as certain places catch up to other places. On diagnosis, we've continued to see an increase, but that increase is faster among poorer non-white kids.

In the whitest school districts of California, including Orange County, you saw the highest rates. It wasn't always a race thing. I think it was more of a socioeconomic thing, which sometimes correlates with race. When the CDC does its surveys of autism rates, they're seeing the biggest growth in these places that were sort of left behind in the past.

There were certain communities that perhaps felt that autism was more of a stigma culturally or that they were more reluctant to seek treatment because they didn't want to be associated somehow with the disorder.

Which is all part of the complicated social factors that were driving all of this, or seemed to be driving the bulk of it.

There's a big idea here, which is what explains it? What are we talking about? Is it an explosion of cases or is it an explosion of diagnosis?

It's an explosion of cases because cases are diagnosis. Just to hammer that point a little bit more. When Leo Kanner came up with autism, it was considered an incurable condition. And it's still considered an incurable condition. But in reality, that's not true anymore. There are studies that show that 40 % of these kids had gone from having a diagnosis to not having a diagnosis.

There is a business element to all of this, which is the billions of dollars that these companies are making to help these kids. These are contractors with school districts or with the state. And the most aggressive ones peddle this idea called recovery. Well, by definition, recovery shouldn't be possible from something that's not curable.

They use the word recovery. They don't say cure. But it's very appealing to parents, and it gets kids to the point where they no longer qualify for the diagnosis. They no longer meet the guidelines for diagnosis. The problem is that you don't know if this is really the result of the therapy, or is this just something the kid grew out of? There's no way to know. If you're a parent and your kid has some issues, are you gonna take your chances? What are you going to do? You're going to get the therapy for your kid. You don't care how expensive it is. And so you'll get lawyers if you have those resources to do so to make sure that the school district or the state provides it, and this is a great business model for these companies.

Parents are in a difficult position. And that's the sort of tone that the piece needed to take. It was not a classic investigative kind of story. I suppose some people could read it that way, and that would be wrong. That would be the wrong way to look at this. I was trying to lay out the massive and expensive public policy dilemmas around a disorder that is on the rise. There's an epidemic of diagnosis. There's an epidemic of autism. They're one and the same.

And the question is, what do you do as a society about this?

You write, “A generation ago, society most likely would not have intervened in the lives of boys like Chase [one of the characters that you talk about]. Today, milder cases such as his are helping to fuel an explosion in the diagnosis and treatment of autism. Factors that have nothing to do with biology can explain much of the steep increase in cases around the world, an expanded definition of autism, spreading awareness of the disorder, and an improved ability to distinguish it from other conditions.” How open or receptive to the nuances of these policy debates were the parents that you talked to, or were they just totally consumed with the lives of their children?

It depended, you know, who you're talking to. A lot of parents were really invested in this idea that there was some toxin, whether it was a vaccine or whether it was something else, some pollutant. This is really tricky territory, right? I think that parents and families feel some camaraderie with each other if they're sharing this kind of experience. They talk to each other. The activism around this is just enormous.

RFK Jr. is going to get to the bottom of this in four weeks or whatever he has said he was going to do. If he does come up with an answer, I think we need to be skeptical.

Because it's a story about a medical condition and you're dealing with a lot of families, minors in many cases. There are going to be obvious ethical questions as a reporter that come up. What were those conversations were like with your editors?

It was all about getting buy-in from the parents. The fourth story was about researchers who were going back and looking at older generations…

I thought that was almost in a way the most heartbreaking of the stories. In the early days when autism was first coming on the scene, the views of people who were on the autism spectrum were really frightening. One of the psychologists who was involved in an early study described them as “little monsters.” Another said that people with autism weren't fully human. It looked a lot different.

It looked a lot different. There are a lot of adults who are only now or later in life getting diagnosed with autism. There's some debate about the usefulness of that. I think the main usefulness of that is just knowing. It gives you a framework to think about what your issues are.

“Unless you're really, really good at reporting and really, really love it, don't do it. The industry is in a terrible state right now.”

Francine and I met a number of adults who had been diagnosed with autism. There was a particular hospital, I think it was in Philadelphia. Some researchers went in there and went through old medical records and found, using modern criteria for autism, that the rate of autism was about one in a hundred, driving home the point that, hey, maybe this was here all along. We just didn't see it in the same way. We've just changed the lens.

Having spent so much time with the topic of autism, what do you make of the neurodiversity conversation?

I think it's useful and interesting. Clearly there are some benefits to certain autistic characteristics. There was one psychiatrist from the Bay Area who was very concerned about how having this label might affect the way kids saw themselves as not normal. It's a complicated, complicated topic.

You don't want to diminish people's experience, or the efforts by parents to help their children, and yet I think there's a risk always of falling into the framing of something like this as a social contagion.

I think that the broader application of the label of autism is in part a social phenomenon. I think that's accurate. People would learn about this from their neighbors, from other people in their school. One Columbia researcher did this spatial analysis of autism cases in the Los Angeles area. He was able to show this social contagion. And one of the controls that he had in his study was that if you had neighboring school districts, parents were not going to be having the same interaction with other people as they would with parents whose kids went to the same school.

There are also different kinds of social contagion. This is one where you're talking about people who have concerns about a specific set of behavioral issues that may or may not fall under the autism spectrum disorder. I'm thinking of something like the sort of very recent and very rapid rise in trans identification among young girls, for instance.

You're getting into some radioactive territory here. That's very radioactive. I think it's an apt analogy. I don't think we know definitively what the answer is there, but I think there is a lot of evidence that at least part of the explosion [is from] kids playing around with gender, differently, changing their minds. The very classic case of transgender kids, it was obvious when they were like two or three years old. A lot of the kids that are part of this more recent explosion, that's not always clear. Sometimes they've had a whole bunch of other issues, anxiety, depression and only later, in early adolescence, do they kind of stumble upon this idea that maybe gender has something to do with this. So it's an apt parallel. Whether it winds up in the same place, I think is kind of an open question.

You really get into some of the same journalistic issues here because, just to extend the parallel, both of these issues have strong activist communities around them. As a journalist, my approach has always been to look at this as scientifically as possible and kind of try to remove the politics from it as best you can. What does the evidence say? How good are the studies?

I wanted to talk briefly about the reaction to the piece. You said this series gave you a lot of heartache, a lot of sleepless nights. There was a lot of journalistic agonizing that went into it.

I think that most people who were in the story appreciated the care that went into this. They didn't always agree with everything but they respected my curiosity and my devotion to really looking at this in a hard-nosed clear-eyed way. The reaction from people who weren't in the story was varied. I took a beating from some of the activists, including parents with kids who had autism. That was a little hard to read. I got a lot of mail from researchers who really appreciated the story and the sober look at this issue. That was very gratifying.

I'm curious what you think about the stickiness of the notion that vaccines somehow cause autism.

It goes to this question of what's driving the autism rates. This idea that vaccines cause autism originates with a British researcher named Andrew Wakefield who published a study in The Lancet that was later retracted. And a lot of researchers have tried to look for evidence. Vaccines are not completely safe. Vaccines are a social contract, right? You are accepting a little bit of risk when you get vaccinated, but you're doing it for the herd. You're doing it for the good of society. That's why vaccines work. One in a million could have a bad reaction to this. And there were cases where clearly kids had a bad reaction to it and it changed their kids. Scientists have tried to see if there are patterns, they haven't been able to find them. I think part of it is the human instinct to want to blame somebody. The other thing I would say is that COVID and the all the debates over vaccines have supercharged the debate over this. And of course, RFK was a major proponent of the idea of vaccines causing autism.

Do you have a couple of minutes to do a lightning round?

I'm not the quickest thinker, you know.

You’ll be fine. Your go-to daily reading sources?

Wall Street Journal, New York Times, The Atlantic. And sometimes those will take me down rabbit holes with their links.

Your favorite country to report from?

Rwanda. I was there for three and a half years right after the genocide writing about how a country comes back after something like that. A lot of the reporting on Africa wasn't very sophisticated. It often fell back on, this is just tribal war, this is just chaos. Whenever you see the word chaos in a story, it's often a signal that the reporter doesn't really know what's going on. Because chaos is a description of something. It's not a force in its own right. Rwanda was a perfect example of how, if you really look at something scientifically, you can see it more clearly. [For a more detailed discussion of Rwanda, please see my interview with Joshua Hammer] The theme of my work there was that the genocide was not a product of chaos. It was a product of the extreme order of Rwandan society.

Your favorite opinion columnist?

Ross Douthat right now. This is not to say I agree with him. I really am a fan of the diversity of people out there. And think it's really important to understand different perspectives and he brings an interesting one.

Do you have a guilty media pleasure?

I'm really into bicycle racing, I waste too much time looking at Velo News.

Your favorite story by another reporter?

Almost anything by Eli Saslow. Also the New Yorker writer Rachel Aviv. She's a true intellect. I don't know her, but she'd be a person to have a dinner party with.

I'll try to get her on here. Your favorite research tool?

The phone. Also get in a car or sometimes planes.

Words of wisdom for aspiring reporters?

Unless you're really, really good at this and really, really love it, don't do it. The industry is in a terrible state right now and if you're thinking about doing something else instead, switch now.

You number one don't do?

Don't write for your sources and don't be an activist. It's an issue that I see especially younger reporters. I guess I'm fairly traditional.

What book are you reading?

I just finished this novel called Martyr. I'm gonna reserve judgment on it. I picked up The Power Broker again, which is an incredible book and maybe one that's worth reading now.

Alan, thanks for coming on.

Thank you. It was fun.