The Autism Diagnosis Problem

From the New York Times, I'm [music]. Rachel Abrams and this is the Daily. Robert F. Kennedy [music] Jr. has. repeatedly cited the skyrocketing autism. rates as central to his mission as. [music] Health and Human Services. Secretary. He's laid the blame at the. feet of everything from Tylenol to. vaccines, and he recently [music]. instructed the CDC to abandon its. long-standing position that the latter. do not cause [music] autism. But while. the rates of autism have increased in.

recent decades, the reasons [music] are. more complicated than what Kennedy has. presented. Today, Azen Gures explains what's really. driving the [music] increase in. diagnosis. It's Monday, November 24th. So Azine, the Make America Healthy Again. movement and RFK in particular have. really put autism in the spotlight. RFK.

Jr. of course has called autism an. epidemic. And I think it is fair to say. that he has instilled a lot of fear in. people about what the root causes of. autism are. >> And you've spent a lot of time thinking. about this as part of your reporting. And so that's where I'd like to start. And in particular, I want to talk about. the numbers. >> Yeah. So, autism diagnoses among. children in the United States have been. rising pretty consistently for decades. In the year 2000, which is the first.

year that the CDC started collecting. data on this question, they found that. one in 158-y olds in the United States. had an autism diagnosis. That number has. risen consistently every year that they. have published their report. And the. most recent data that they published, which came out this year, found that one. in 31year-olds. has an autism diagnosis. >> So it goes from 1 in 150 to one in every. 31 children. >> Yeah. And I mean, that's a huge.

increase, right? And RFK really frames. this as an epidemic. He says, you know, there's something in our environment. that is causing autism to spread like. wildfire, but that's misleading. You. know, from all the experts that I've. spoken to, they've acknowledged that. there are environmental factors that. likely interact with our genetics that. are contributing to the rise in autism. You know, there's things like pollution, for example, people choosing to have. children later in life, but those are.

ultimately a really small part of the. explanation for this rise. And the. biggest reason that we know of that is. driving this increase actually has to do. with how we define what autism is. And. that definition has been expanding over. the last several decades. >> So basically, you're saying that the. tent has gotten bigger, but not. necessarily because there is a true. fundamental increase in the number of. people who have autism, even if that's. part of it. It's that more people are. being captured within this expanding.

definition. >> Yes. But there has been a growing fight. over whether this tent has grown too. large. These are fights over resources. their fights over research priorities. Parents, activists, doctors, scientists. who are researching this are starting to. really grapple with whether. everyone in the community is getting. what they need given that the needs of. people under this very broad tent can be. very different. And one of the people I've been talking.

to for a while about these rising. tensions is this psychologist named. Kathy Lord. Her career basically tracks. our understanding of autism. She is a. legendary autism researcher. She has. been actively involved in defining. criteria for the disorder. So, she's. really been at the center of a lot of. this change. >> Tell me a little bit about her and sort. of her backstory. >> So, she is a clinical psychologist. Hi, Kathy.

>> Hello. >> She's at UCLA. She has spent her whole. career studying and working with people. with autism. >> What What drew you to the field of. autism in the first place? I think I. like the kids. I just thought they're so. interesting. >> Kathy in the 1970s as an undergrad. started working with children who had. what today we would call autism. >> The kids that I saw then, we assumed. they were not verbal. We assumed they. couldn't talk. They did not look at us.

>> The kids that Kathy was seeing, many of. them had intellectual disabilities. Some. of the kids would be rocking back and. forth, avoiding eye contact. Many of. them wouldn't talk, couldn't talk, or. even would just repeat what was said. back to them. >> We didn't understand why would a child. be moving their fingers in an unusual. way like starfish or why were they upset. when they, you know, someone put. something down in a place that they.

hadn't expected it to be. And at the. time, psychologists and psychiatrists. thought maybe this was a form of. schizophrenia. >> So, originally it was both considered. childhood schizophrenia or infantile. psychosis. >> Why did they think why did they think it. fit the profile of schizophrenia or. psychosis? >> I think part of it is that we use the. term psychosis when people do things. that we don't understand. >> And what were the clinicians telling the. families like telling the parents and. what kind of treatment were they.

suggesting. >> that they hadn't? Yeah. So at that time. parents were basically told that there. was nothing that can be done. >> You know, don't even try. Just send them. away. >> and that they should send their kids. away and live your life because they'll. never be able to do anything, which is. not true. But that is what people were. telling them. >> It was really in the heyday of a pretty. dark period in psychiatry history where. institutionalization was very common. kids were sent off to often state-run.

institutions where they were basically. hidden from society. >> So when and how does that start to. change? >> So yeah, when Kathy was entering the. field, this is a time when there was a. shift away from thinking that these kids. could not be helped to realizing that. actually there were things that. psychologists could do that could help. these kids. How do I both adjust the. world around them, but also how do I. give them tools for example to.

communicate that would allow them to. learn? And as this shift is underway in. the year 1980, autism gets added to the. diagnostic and statistical manual of. mental disorders. And this is considered. the bible of psychiatry. The fact that. the diagnosis was added in that year was. really significant. So this is the first. time autism is officially recognized as. a diagnosis. Where does it go from. there?

>> Yeah. So at the time the definition for. autism was very narrow. The DSM said. that the essential features were a lack. of responsiveness to other people, language problems, and quote bizarre. responses to various aspects of the. environment. And all of that had to. develop in the first 30 months of their. lives. The DSM specifically said that. autism was considered very rare and it. estimated that something like 2 to four. kids in every 10,000 would have this. diagnosis.

>> But pretty much from the get- go there. were questions around what autism. actually was, how it should be defined. >> [music]. >> We were thinking that wait a minute. there are people that don't have. language delays but who actually have. some of the same social difficulties. that autistic kids have. Clinicians were. asking really sharp questions about what. autism really was. They were asking what.

if a kid does not have a language delay? What if they are able to speak but they. speak differently? And I think also. people were more aware that cognitive. disabilities like intellectual. disabilities are a feature but they're. not always there for autism. Not. everybody with autism has an. intellectual disability. >> How do we sort of draw lines around this. disorder when there seem to be all sorts.

of kids with sort of different. manifestations of what seems like the. same thing? >> We then said, "Wait a minute. we need to. make this broader. >> And that's sort of when this idea of the. autism spectrum gets [music] introduced. for the first time that maybe this is. sort of a continuum of traits and. [music] we're thinking a little too. narrowly in the definition of autism. that we have. So the way the medical community deals. with this is in 1994 two really big.

changes happen. one they loosen the. criteria for autism itself and second. they create a new related diagnosis. called Asperers and that sort of. captures a lot of the edge cases that we. were just talking about. So it's the. first step in really a broadening of. what we think of as the sort of. constellation of autism. So does. broadening the definition and also. capturing this other group of kids does. that help settle the question of what.

autism is and isn't? I mean, it was. supposed to, but then Kathy does this. research that attempts to look at how. people are actually being diagnosed. >> We did a study where thousands of kids. were seen and all given the same. diagnostic batteries. >> And she finds that asberers in. particular is a really squishy. diagnosis. that what determines whether. a child would get diagnosed with. Asberers had more to do with, you know,

what clinician they saw than what. criteria they met. >> But the clinic in the Midwest would say. somebody had autism and a clinic in the. East Coast would say they had Asperers. >> It made clear that these definitions are. still not specific enough and they're. not reliable. It was very confusing and. resulted in kids who often over a. lifetime might get an autism diagnosis, then an asberers diagnosis, and then. sometimes have to come back to an autism.

diagnosis. So, it really seemed like. scientifically. this is not useful. Diagnoses matter. because diagnoses are the key to getting. the specific medical attention that you. need to getting the specific services at. school that are going to help support. you. A diagnosis is also key for. insurance coverage for behavioral. therapy and then they also matter at the. level of how a person and their family.

conceives of who they are and what. they're struggling with. So it sounds. like it's both meaningful personally but. also quite meaningful in terms of. resources as you mentioned like there. are meaningful stakes here for the. people involved in terms of what they. get access to whether it's healthcare or. school resources or beyond. >> Yes, exactly. And so that led to the. medical community rethinking once again. how they are defining autism. And so in. 2013 Kathy was actually on the committee. that made this change. Basically what.

they decided was these lines that we're. drawing are not reliable. They're not. consistent. And the way that they. decided to resolve this issue was to. fold everything together under one. single diagnosis. So autism spectrum. disorder. And that meant that the kids. who were severely disabled, the kids who. maybe couldn't speak or maybe had an. intellectual disability had the same. diagnosis as someone who would have.

formerly been diagnosed with Asperers. >> So basically Aspberers as a category is. getting eliminated. The definition of. autism is expanding and the whole tent. basically is getting bigger. >> Mhm. And it's being recognized as a. single tent. You know, before I think. there was recognition like these things. are related to each other. Now it's. being viewed as one thing, one group of. people. And sort of in parallel to the. changes that we've been talking about, there was also the growth of what became. known as the neurodiversity movement.

[music]. This movement was really about beginning. to view autism through a different lens. and rejecting the idea that it was a. disease in need of a cure. I think I'll start out and just talk a. little bit about what exactly autism is. Autism is a very big continuum. >> Often the advocates in the. neurodiversity movement like Temple. Grandon were on the milder end of the. spectrum or you know would have formerly. had an Asberger's diagnosis. >> Einstein and Mozart and Tesla would all.

be probably diagnosed as autistic. spectrum today. >> And they emphasized [music] that many of. these traits instead of being seen as. pathologies, they could be seen as just. differences. You know, sometimes they. even referred to them [music] as. superpower that they could be things. that made a person, an autistic person, see the world in a different way that. was actually really valuable to [music]. society. >> Literally in our investment committee. meetings, uh, we talk about whether or. not this founder has the right balance.

of RZ and Tis. [music]. >> Mark Zuckerberg's sister is quoted as. saying that, you know, to succeed in the. technology industry, you need a little. bit of the RZ and a little bit of the. Tis. rez being charisma and tis being. autism. >> Neurode divergence is a superpower. Uh. and we look for people that live their. lives differently. And I think it also. represents uh an intensity and. directness. [music]. >> Downstream from the efforts of those. early activists was just a broader.

awareness and [music] embrace of autism. in society. >> I'm actually making history tonight as. the first person with Asberers to host. SNL. You have that at the level of Elon. Musk going on Saturday Night Live and. saying at the time that he had an. Asperger's diagnosis. >> or at least the first to admit it. >> So, we'll make a lot of eye contact with. the cast tonight. >> There's sort of a cultural embrace of. autism that, you know, extends to media. and TV. We have, you know, the Big Bang.

Theory. >> I realize you're also on your own. tonight. So, if at some point you find. yourself with nothing to do, please do. not disturb me. [laughter]. >> Love on the spectrum. I can't I can't. think can't think of anything to say. about but I'm still having a good time. >> Me too. >> Do you think we have a character with. autism on Sesame Street? >> Julia doesn't say a lot. >> That's right. And she may not do what. you expect like give you a high five. >> Yeah. She does things just a little. differently. >> So it's really this movement away from.

stigmatizing autism and being in some. cases proud of autism as a label. >> [music]. >> It's really striking, Azine, how the. label autistic has really changed so. dramatically just in my lifetime. [snorts] Yeah, I think this is all. really a victory for the neurodiversity. movement. And the stigma begins to fade. so much that for a lot of families, it. actually becomes desirable in some ways.

to have a diagnosis for your kid if they. have some of these struggles. it. actually becomes a way for them to be. validated and again, you know, be able. to access resources that might be able. to help them. But [music] all of these changes, the. increase in diagnosis and and the really. increased awareness, all of this ends up. leading to a lot of unintended. consequences for the autism community. itself.

[music]. We'll be right back. So Azim, before the break, you mentioned. that the widening group of people. diagnosed with autism had unintended. consequences. Explain what those were. So while broadening the tent did expand. access to help for a huge number of. people, it also brought in many. different kinds of people with many. different kinds of needs. And that has.

raised these tensions over which of. those needs get prioritized in a world. where there's a really limited pile of. resources to help. And there's two. really big areas where we see this. And. the first is schools. M. >> you know I spoke with a lot of families. who had kids with severe autism who said. that as the number of kids with less. severe disabilities has increased so. much over the years. It's made it harder.

to access school services that are. actually geared towards their kids. Their kids needing a lot more help and a. lot more support to get through the day. I talked to parents who said that their. kids had been kicked out of multiple. schools. Basically, they're being told. their kids are too autistic to be in the. classrooms that are actually designated. for kids with autism. I spoke with. another parent who talked about having. to actually pull her son out of a school. where he was aloping, the word for. running away, which is a common problem.

among kids with severe autism. And the. school didn't have gates. It was just. not a safe environment for him. Um, and. there was actually a survey that was. conducted by the National Council for. Severe Autism that found that, you know, of the 800 parents that they surveyed, 80% said that they had been told that. their kid was actually too disruptive. even for programs that were geared. towards kids with autism. So, these. families are really frustrated because. the pool of resources is not expanding. at the same rate as the number of.

children with autism is expanding. and. they're actually finding it harder to. get the help that they need for their. kids and their kids need a lot of help. >> What is striking me here is that years. of work went into dstigmatizing autism. and the end result of that is that you. have people increasingly being included. in different aspects of society, included in schools, included in. classes, being prouder to talk openly. about their condition. However, that has. also meant more people competing for a.

finite number of resources. And the. irony of this is that the net effect. seems to be that the students with the. most severe needs are being excluded. from places like the classroom as you. mentioned because they are being told we. simply do not have the resources to. support you in this environment and. you're going to need to go elsewhere. >> Yeah, absolutely. And I've heard that. from countless parents of kids with. severe autism. M. >> we've seen a really similar thing play. out in terms of autism research. Even as.

the amount of money that has gone. towards researching autism has grown. substantially year-over-year, we've. actually seen a decrease in studies that. are focused on people with the most. severe impairments. M. >> I spoke with a child psychiatrist in. Boston who actually did a review of all. treatment studies from 1991 to 2013 and. he found that the proportion of studies. that included participants with severe. autism declined from something like 95%. of the studies to just 35%.

And this is being driven by some very. sort of logistical factors and a sort of. perspective on how this research should. be approached. You know, a person with. severe profound autism can't go online. and fill out a survey. >> You know, that's a really easy way to. get data on large groups of people is to. have them fill out online surveys. They. also can't go sit in a brain scan. machine that is loudly humming for an. hour. And at the same time, the research.

priorities around autistic people's. lives have moved away from the sort of. questions that are seeking a cure or or. a treatment for autism and more towards. the sorts of questions and concerns that. are of a lot more importance to people. on the milder end of the spectrum. So. questions around mental health or or. employment. And you know, the parents of. the severely autistic kids who I spoke. with said those concerns do not relate. in any way to their kids' lives. You. know, their kids are struggling with.

things like eating or or learning how to. talk, >> right? Employment is not going to be an. option for these families. They have. different concerns. >> For a lot of them, it won't be. So, this. group being lumped together has led to a. lot of disagreements over how to. approach these problems. It sounds like. a lot of the discussion that you're. describing is actually not about trying. to understand what autism is. It's. actually about what kind of resources. those designations unlock for families. And I can imagine that that could maybe.

pit families against one another. Is. that going a step too far? No, I think. that is definitely a dynamic that is. playing out. I think the dividing line. in the community is a little more. complicated than that too in that it's. really these parents of the kids with. severe autism who are now at odds with. activists who are self- advocates who. are autistic people themselves who say. you know we have a shared experience as. members of the autistic community that.

you can't understand and I think that is. a really difficult dynamic that has. played out in this community is who gets. to speak for the community when there. are such broad needs and the people on. the most severe end of the spectrum. often cannot speak for themselves. [music]. >> Kathy, was there sort of a moment in. your own practice where you realized. there might have been a downside to this. expansion? Like this is having some.

negative consequences that we didn't. prepare ourselves for. >> Yes, I I think so. And Kathy has this. experience as well on a committee where. they are discussing housing for autistic. people. >> And there was an autism self- advocate. and then a bunch of other people from. different agencies. and she is on the. committee with an autistic self-. advocate who is really pushing against. the idea of group homes, arguing that.

basically it's taking us back to the. dark days of psychiatric. institutionalization that we've really. moved away from. >> When I say group home, I'm thinking of. like four or five people who live in a. house with like two other people who are. helping take care of them. >> And she has this realization. I felt. like they didn't understand that these. are people that have nowhere to live. except with their parents who are. getting older and can't take care of. them. >> She felt like that the self- advocate.

did not understand that this is for. people who have the most severe needs, who do need roundthe-clock care, who. cannot live independently. But I think. the idea that they were representing. autism. as if they [music] were experts on all. forms of autism, that was certainly. something that I had a hard time [music]. with that I won't forget.

And she talks about how that experience. really made her worry about who gets to. speak for the experience of autism, who. gets to make choices for that community, who gets represented, who gets resources. has been made much more difficult by. just how broad the range of experience. contained in this diagnosis has now. become. So, as Kathy sees these. unintended consequences playing out, what does she see as the solution? Can you talk about the the proposal of.

this category of profound autism? Sort. of when that came to be and then. obviously your involvement in it, too. >> Yeah. So, we were I mean, Lanced offered. us the opportunity to set up an. international commission across. disciplines. Kathy and a group of other. researchers and clinicians and autism. advocates have actually been over the. last several years proposing that. perhaps there needs to be a separate. category for the people with the most.

severe disabilities. So she in 2021 is. leading this thing called the Lancet. Commission. >> Wow. So basically it sounds like she's. undoing the work that she's backed for. decades in order to broaden the. category. >> Yes, in a way. And then there was a lot. of discussion about what on earth we. call this. >> What this group of experts ends up. proposing is a separate category that is. called profound autism. And the way they. defined it is having minimal or no.

ability to speak or an IQ of less than. 50 or both and requiring 24-hour access. to a caregiver. So, it's really about. recognizing that there is a part of this. population with very severe needs and. and having a label so that that group of. people can be identified. So, essentially after years of expanding. this definition, Kathy is now proposing. something that would chop up the. spectrum once again. But what would the practical effect of. that be of that cleaving off of one.

other group? First, this is not a actual. diagnosis that has been proposed. Profound autism is a label that has. casually grown in use over the years. I. hear clinicians using it all the time. The reason to have this label, I think, ultimately boils down to recognition. So, recognition that this is a group of. individuals with really severe needs. The roundthe-clock care being right. there as part of the definition, I. think, tells you a lot. And I think.

flowing out from that is the hope that. this will be a group that will be able. to get more in terms of the services. that their families have really. struggled to get for them over the. years. >> But for now at least, even if they were. to cleave this off into a separate. category, it's not like it would direct. resources to some of these people that. need it most. >> Yeah, I I think that's certainly the. hope, but I don't think we know. And you. know, it's definitely not clear that. this is going to be a magic solution.

that fixes these issues that Kathy and. others have identified. >> Given all of these consequences that we. have talked about and this lopsided. allocation of resources that some. parents have pointed toward, does Kathy. think it was a mistake to broaden the. diagnosis just especially given that. she's trying to undo some of that now? I. asked her if she regretted in any way. the sort of role that she played in. expanding the diagnosis. >> I do think it has backfired to some.

degree. >> I think there's broad recognition and. Kathy certainly also recognizes that. >> folding everything under one diagnosis. hasn't worked. >> The whole idea of autism awareness, those are things that are really good. But I do think that we have contributed. unwittingly to having diagnosis that are. very complicated. What is not clear is what will work and. what will fix the problems that they.

were trying to solve for in the first. place without leaving anyone behind. The. parents of kids with profound autism. maybe will be satisfied by having a. distinct diagnosis, but that still. leaves a lot of people with wide range. of needs. Kathy is also worried about. >> I mean I I don't know what to do, you. know, how how to solve this because I. think the solution is not linear. It's. not going to be you're in this group, you're in that group there. I mean there.

there aren't two groups. [laughter] I. don't think we could agree on three. groups or four groups. I also spoke with. autistic self- advocates who are really. worried about if the diagnosis is split. apart. The message that that sends is. that the people who don't have profound. autism don't have autism at all. And I. think there's a real fear about that. support being lost that then we will be. dividing the spectrum up into people.

with real autism and not real autism. And I think that's a real concern too. >> How do we how do we move forward? I I. don't know. Kathy, [music] thank you so much for. taking all this time and for walking us. through all of this. No, thank you. It feels a little bit like a sad irony.

that there have been so many people like. Kathy who worked so hard to get people. help and in the [music] process. destigmatized this diagnosis of autism. and expanded what it means and in so. doing they now fear that that work might. have harmed some of the people who. needed it most. And [music]. it is not clear what any real solution. for everybody in this community could. look like. [music]. Yeah, you know, having this separate. category made for profound autism will. maybe solve some of the problems that.

we've been talking about, but it still. leaves [music] a lot of unanswered. questions about where's the line between. a disability and [music] a difference. Who should be speaking for a community. that is [music] as broad as this one? Where are diagnoses helpful? And where. can they in [music] some cases cause. harm? I think these are a lot of. questions that the field of psychiatry. in general is wrestling with right now. and I think those are still unanswered.

[music]. >> Azine, [music] thank you so much. >> Yeah, thanks for having me. >> [music]. >> We'll be right back.

[music] Here's what else you need to. know today. I have too much self-respect. and dignity. I love my family way too. much. and I do not want my sweet. district to have to endure a hurtful and. hateful primary [music]. against me by the president that we all. fought for. In a stunning announcement. late Friday, [music] Congresswoman. Marjgerie Taylor Green, once one of. President Trump's most loyal allies, [music]. said she would resign from Congress in.

January. Green kept her plans tightly. under wraps, surprising some of even her. closest colleagues. Loyalty should be a. twoway street, [music] and we should be. able to vote our conscience and. represent our district's interests. because our job title is [music]. literally representative. Her. announcement came days after President. Trump branded [music] Green as a traitor. because of her efforts to release the. Department of Justice's files related to. Jeffrey Epstein. Standing up for. American women who were raped at 14.

years old, trafficked and used by rich, powerful men should not result in me. [music] being called a traitor, and. threatened by the president of the. United States. >> She also [music] said that her time in. Congress came with an onslaught of. attacks and death threats, and that her. own alienation [music] from the. Republican party meant the inevitability. of the alienation of the MAGA base. In. an interview [music] with ABC News, Trump called Green's plans to retire. early great news for the country.

Today's episode was produced by Alex. [music] Stern and Nina Feldman with help. from Diana Wyn, Jessica Chung, and Ricky. Netsky. It was edited by MJ Davis Lynn. [music] with help from Patricia Willins. Contains music by Marian Lozano, Pat. McCusker, Diane Wong, [music] and Dan. Powell, and was engineered by Chris. Wood. >> [music]. >> That's it [music] for the daily. I'm.

Rachel Abrams. See you tomorrow.