Yves here. The discussion below illustrates a debate within the autism community, as in advocates for those diagnosed with this condition. I’ve heard it claimed (but have not seen corroborating data) that the big rise in autism cases is of those who would previously been deemed to have Aspergers, as in typically high functioning and often very intelligent individuals who still have great difficulty in reading emotional cues. I know two people diagnosed as being autistic, but you’d never know it unless they volunteered. But both said they have worked very hard on learning how to interact with others.
A key tidbit comes well into this talk: the reason RFK, Jr.’s theories about autism are bunk is that it”s not a post-natal condition. Autism does seem to have a genetic component, and to the extent that there are also environmental factors, the relevant environment is the womb.
Originally published at Undark
Welcome to Entanglements. In this episode, hosts Brooke Borel and Anna Rothschild ask: Should we try to prevent autism? It’s a question that has divided the autistic community, and the answer has significant implications on how to focus scientific research and funding.
As always, to dig in, our hosts invited two guests with differing opinions to share their points of view, in an effort to find some common ground. The point isn’t to both-sides an issue or to try to force agreement. Instead, they aim to explore the nuance and subtleties that are often overlooked in heated online forums or in debate-style media.
Their guests this week are Jill Escher, a philanthropist, president of the National Council on Severe Autism, and parent of two young adults with severe nonverbal autism, and Eric García, the Washington bureau chief at The Independent and the author of “We’re Not Broken: Changing the Autism Conversation,” who is himself autistic.
Below is the full transcript of the podcast, lightly edited for clarity. New episodes drop on Wednesdays. You can also subscribe to Entanglements at Apple Podcasts and Spotify.
Robert F. Kennedy Jr: These are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date. Many of them will never use a toilet unassisted. And we have to recognize we are doing this to our children.
Anna Rothschild: That was Health and Human Services Secretary Robert F. Kennedy Jr., talking about autism back in April of 2025. And he promised to find some answers about the cause of the condition, which he called an epidemic.
Robert F. Kennedy Jr: This is a preventable disease. We know it’s an environmental exposure. It has to be. Genes do not cause epidemics.
[Music]
Anna Rothschild: On that note, welcome to Entanglements, the show where we wade into the murkiest scientific controversies and search for common ground. I’m science journalist Anna Rothschild.
Brooke Borel: And I’m Brooke Borel, articles editor at Undark Magazine. And that was a dramatic cold open. Anna, what’s happening here? Are you about to do an episode on whether vaccines cause autism?
Anna Rothschild: No, that is not a murky controversy. That has been rigorously disproven.
Brooke Borel: Yeah.
Anna Rothschild: No, today we are asking the question: Should we try to prevent autism?
Brooke Borel: Ah, that’s not what I was expecting, but I’m intrigued.
Anna Rothschild: Yeah. So there are scientists who say that we actually can’t prevent autism, or who disagree on how we’d do so, and we will certainly get to that later. But I really wanted to focus on this deeper philosophical question, because it’s one that’s dividing the autistic community.
Brooke Borel: Dividing the community? OK.
Anna Rothschild: Yeah, so today we’re going to talk to two people who care deeply about the autistic community. One who sees it as our duty to prevent the most severe forms of autism, and another who worries that prevention actually conflicts with another duty, which is to support autistic people who exist right now.
Brooke Borel: Autism is quite common in America, so I think most of our listeners will have someone in their lives who is autistic, or have at least met an autistic person. But before we get too deep into this episode, maybe we should start with a definition.
Anna Rothschild: Yes, good call. So, Autism Spectrum Disorder is a condition involving the brain that affects social interactions, communication, and cognition. But it presents in many forms. And RFK Jr. isn’t totally wrong: There are some people who are extremely disabled by autism and need 24/7 care. But others do play baseball and write poems. And also get married! And become CEOs!
Brooke Borel: Yeah.
Anna Rothschild: And do all sorts of other things.
Brooke Borel: Exactly, exactly.
Anna Rothschild: Basically, the idea of preventing autism raises all sorts of ethical and societal questions. But I’m hoping we can find some common ground today. So, shall we hear from our guests?
Brooke Borel: Let’s do it.
[Music]
Jill Escher: I think we need what I would call the Manhattan Project of autism causation.
Anna Rothschild: This is Jill Escher. She plays many roles in the world of autism.
Jill Escher: First and foremost, I’m the mother of two young adults with severe nonverbal autism: Johnny, who is 26, and Sophie who is 19.
Anna Rothschild: Jill is also the president of the National Council on Severe Autism.
Jill Escher: We advocate for that part of the spectrum that is nonverbal and is heavily dependent on others and who cannot self-advocate. And I’m also an autism research philanthropist. I have a fund called the Escher Fund for Autism. We fund autism research, primarily in the realm of causation.
Anna Rothschild: Ultimately, should we try to prevent autism?
Jill Escher: Oh yes. I mean, you know, listen, I think there are people who are very cognitively capable and they are very happy with the way they are, and they wouldn’t change a thing and more power to them. I would never want to force anything on anybody.
Anna Rothschild: But when it comes to kids like hers …
Jill Escher: Yes, if I could have prevented their brain wiring from going awry, I would have done that. No question at all.
Anna Rothschild: What does that look like to you? Like how does that work for you?
Jill Escher: Well, let’s go to my son who’s, as I said, he’s 26 years old. He’s nonverbal. He can’t read, he can’t write, he can’t add one plus one. He doesn’t understand, you know, the most basic concepts, like birthday or family or holiday. He can’t get dressed by himself. He can’t brush his teeth. He needs help with toileting. You know, he is about as cognitively impaired as it is possible to imagine.
Every single thing in life is unavailable to my son. Every single thing, because he is so cognitively impaired. And it’s because his brain developed abnormally. So this question is: What if Johnny’s brain didn’t develop abnormally? What if it developed along a normal trajectory? That’s what prevention means to me.
Prevention is the difference between catastrophic disability and basic functioning. Asking for children who are disabled by autism — asking the question like, “Oh, would you prefer that they have the capacity for basic functioning rather than being dependent and impaired 24/7?” That’s not a hard question in a moral universe. In my moral universe, there’s only one answer.
Brooke Borel: I mean, when you put it like that, I hear what she’s saying.
Anna Rothschild: Yeah, I know. I have a lot of compassion for that point of view. Now, Brooke, to understand how Jill wants to prevent autism, we need to talk a little bit about the science.
Brooke Borel: OK.
Anna Rothschild: So, scientists have been looking for the causes of autism for decades at this point. We know that it runs in families. So for example, even if you don’t live in the same household — if you have autism, your cousin is also more likely to have autism. And scientists have found some genes related to the condition, but certainly not enough to explain every case.
Brooke Borel: Mhm.
Anna Rothschild: Many scientists think autism is primarily genetic. It’s hard to quantify that, but I found a 2015 studyshowing that 95 percent of 60 surveyed autism researchers thought genetics was the major cause of the disorder. But that said, the number of diagnoses has risen, and that’s led some people to hypothesize that there’ s something else going on.
Brooke Borel: How much are we talking about?
Anna Rothschild: Well, according to a CDC report, in 2000, 1 in 150 kids under 8 were diagnosed with autism. In 2022 it was 1 in 31.
Brooke Borel: Ah, that is not an insignificant rise.
Anna Rothschild: I know, I know. But many scientists say that this increase is due to more testing and a broader definition of Autism Spectrum Disorder. And it’s true that our definition has changed. In fact, it wasn’t until 1980 that the DSM, the psychiatry handbook, gave autism a separate definition from schizophrenia.
Brooke Borel: OK, that’s wild!
Anna Rothschild: I know, for sure.
Brooke Borel: And I know the definition has changed in other ways too, right? Like, in the past, people only thought that White boys got autism, and now we know that people of color and girls get it, too. The presentation is just a little different for girls.
Anna Rothschild: Totally. That’s completely right. But that said, Jill and some scientists think that better diagnoses can’t totally explain the increase we’ve seen. And like RFK Jr., she thinks we’re in the midst of an autism epidemic — that there are things in the environment causing rates of autism to rise. But Jill does disagree with RFK Jr. on an important point.
Jill Escher: Robert F. Kennedy Jr. has hinted at his interest in postnatal events being related to autism risk, right? He’s mentioned things like mold. He’s been a proponent of a vaccine hypothesis, for example. Those things do not cause autism. Postnatal events do not cause autism.
Anna Rothschild: Just to clarify, Jill’s saying that she doesn’t think autism is caused by anything a baby is exposed to after it’s born, and that is largely supported by scientists. The condition likely begins during early brain development in the womb. But Jill doesn’t believe that autism is purely genetic. She wants more research into prenatal causes — things babies encounter in the womb, or that parents are exposed to before a baby is even conceived.
Jill Escher: There’s not going to be a cause. Let’s be clear. We will find risk factors — at best we’ll find risk factors. There won’t be some really clear cause. Like, for example, we can go back in history to, let’s say, 1960, when babies were being born without limbs. And in that case, we found the cause. The cause was a drug called thalidomide. So that’s not going to happen with autism. There’s not going to be like, “Oh, here’s this drug, let’s pull it off the market, voilà, no more autism.”
You know, the risk factors for autism are going to be much more complex and they’re going to be very diverse. So, I think what we can do is identify risk factors and modulate them. You know, the more we know, the better we’ll be able to take meaningful steps to prevent abnormal neurodevelopment in children.
Anna Rothschild: But not everyone feels that way. Here’s how it went when I posed the question to my next guest.
[Music]
Anna Rothschild: Should we try to prevent autism?
Eric García: I don’t think you can. All of the research and all the science that I’ve seen is that it’s always going to be there with us and certainly it’s not caused by mold or vaccines or any of the other stuff that Robert F. Kennedy Jr. is talking about.
Anna Rothschild: Theoretically though, if one could.
Eric García: I don’t think we should. You know, I think that creates a lot of ethical questions about who are the people we’re preventing.
Anna Rothschild: This is Eric García. He’s the Washington bureau chief at The Independent, the U.K. newspaper. He’s also a columnist for MSNBC, and the author of the book “We’re Not Broken: Changing the Autism Conversation.”
Eric García: I wrote that really kind of as a journalist, really trying to break down what the effects of misinformation are for autistic people and what it means when you focus consistently on trying to cure autistic people and less on trying to help autistic people live more fulfilling lives.
Anna Rothschild: Eric is himself autistic. As we speak, he doesn’t make eye contact with me and plays with a fidget spinner to stay focused. These are subtle things, but ones that he points to as signs of his autism.
Eric García: I think a lot of people say that, “Oh, well, this person’s, you know, I’m somebody who’s low support needs.” And that’s true, absolutely. But I think a lot of people mistake how much it took on the front end for me to be “low support needs.”
Anna Rothschild: Yeah. You’re an extremely successful journalist, but it’s taken a lot for you to get there?
Eric García: There was a lot of investment. There were a lot of education accommodations. There were a lot of services. It was a deliberate social goal to accommodate someone like me.
Anna Rothschild: Eric was born in 1990, the same year that the Americans with Disabilities Act was passed. That’s the law prohibiting discrimination based on disability. 1990 was also the year that autism was added to the Individuals with Disabilities Education Act, or IDEA, which ensures that disabled children can go to public schools and get access to special education and other services. Now, these laws are imperfect — for example, IDEA has never been fully funded — but Eric and other kids born since then have benefitted from them. And this shapes how he thinks about research.
Anna Rothschild: Is there value in knowing the cause of autism?
Eric García: There is some value, I think. I think what matters more is: What do we do with the autistic people we have now? And how do we serve them as is? Because, you know, it’s very likely that autistic people have been with us for life, por vida.
Anna Rothschild: Should we be spending more resources than we already are to find the cause of autism?
Eric García: You know, I think we already are spending a lot. I think that the last I checked, hold on, I have it right here.
Anna Rothschild: Here, Eric pulled up the Interagency Autism Coordinating Committee’s Portfolio Analysis report, which is a big survey of all the money spent on autism research of all kinds and from all sources in the U.S. In 2020, the total amount was almost $419 million.
Eric García: 45.4 percent of that is focused on biology. Another 17.5 percent is focused on genetic and environmental factors. You know how much is spent on infrastructure and prevalence? 8.7 percent. How much is spent on lifespan issues? 4.3 percent. And only 8.4 percent of all of the money spent on researching autism focuses on services and supports.
Anna Rothschild: Basically, Eric thinks we should prioritize research that helps autistic people live healthy, happy lives.
Eric García: Recognizing that autism is a disability, and accepting autistic people as they are, go hand in hand. Because once you recognize that there are some impairing parts of autism, what then needs to happen is you have to recognize — you have to ask, how do we minimize suffering? Or how do we minimize harm for a person? And how do we make the best possible environment for them? And that is the case for any disability, whether it be blindness, whether it be cerebral palsy, whether it be paraplegia or Down syndrome. That’s the question that we all ask. And that’s literally kind of the defining criteria for the American Disabilities Act.
Anna Rothschild: I think the difference though is that if you have paraplegia, most people would say we’d like to prevent paraplegia.
Eric García: True.
Anna Rothschild: I think it’s a bit different with the autism conversation because many autism advocates say that there is value itself in being autistic, and it’s not something we’re necessarily trying to get rid of in society.
Eric García: Yes. But I mean, at the same time, you know, when I first moved to Washington, D.C. I lived on H Street, and that wasn’t too far from Gallaudet University. Which, for those who don’t know, Gallaudet University is a deaf, university for the deaf. And it was really the first time I came in contact with I guess what you could call deaf culture.
There are deaf people — some of them get cochlear implants, but others say, no, we don’t want to change, we want the way that we process sound to be treated just as valid. We want ASL to be seen as a valid form of language. And so I think the thing that I would say is that in the same token, just like there is little people culture and there is blind culture and deaf culture, there is autistic culture.
Anna Rothschild: Are there parts of your autism that you are like, “I wouldn’t change this for the world?”
Anna Rothschild: What are those parts?
Eric García: I wouldn’t be a journalist without it.
Anna Rothschild: Hmm. How so?
Eric García: I wouldn’t be just kind of enough of an asshole to just want to get somebody to answer my questions. You know, I’m usually sitting in the front of the press conferences at the U.S. Capitol, with House Speaker Mike Johnson or House Minority Leader Hakeem Jeffries or Chuck Schumer. And it’s just like, no, damn it, you’re going to answer my question.
Anna Rothschild: So, Brooke, Eric is not alone in feeling like autism is worth protecting.
Brooke Borel: Mhm.
Anna Rothschild: Here’s a quote I’d like you to read.
Brooke Borel: OK.
Anna Rothschild: It’s from the Autism Self-Advocacy Network, which is a group run by autistic people that strives for autism disability rights.
Brooke Borel: OK, so it’s from a page called “What We Believe.”
“We need more research that helps autistic people live our lives. But most autism research focuses on trying to find out what causes autism, in order to prevent or ‘cure’ it. This is not research that autistic people want. It doesn’t help autistic people that are here now. More money needs to be given to research that helps us, like research on communication, community living, education, and health care for autistic people.”
OK, I mean, that seems pretty in line with what Eric said.
Anna Rothschild: Yeah, for sure. But keep going, there’s another paragraph.
Brooke Borel: OK.
“Recently, more research has been done to try and change the genes of autistic people before we are born.” Wow, OK.
“The goal of this research is to make it so that when we are born, we are not autistic. Autistic people are an important part of society, and we should get to live our lives as autistic people. This research is eugenics, and should not happen.”
OK. I’m having a bit of an emotional response to that. That is, that’s a lot.
Anna Rothschild. I know.
Brooke Borel: That’s a lot.
Anna Rothschild: I don’t blame you. I did too and, I mean, I have a lot of empathy for this point of view.
Brooke Borel: Mmm, yeah.
Anna Rothschild: And, I will say, Eric mentioned similar concerns when I brought him and Jill together.
Anna Rothschild: First of all, I just want to thank you both for agreeing to have this conversation. These issues that we’re talking about today are not only contentious, but they are deeply personal for both of you. So I’m really impressed that both of you are willing to come together and actually have a good faith conversation.
Jill Escher: Oh my pleasure. I’ve had a lot of conversations with a lot of people with a lot of opinions. There are a lot of opinions in autism land.
Eric García: Yeah.
Anna Rothschild: We got right to some of those opinions.
Eric García: I worry because we see something similar with Down syndrome in places like Iceland, where basically there are no children with Down syndrome in Iceland.
Anna Rothschild: In Iceland, due to prenatal screening and the availability of abortion, only two to three babies with Down syndrome are born each year.
Eric García: That creates a lot of, I guess you could say, moral quandaries and that goes into basically designer babies. And it worries me that if we find a biomarker or a prenatal test, that can lead to, I mean, I don’t want to touch the e word, the eugenics word. But it leads to a lot of morally ethical questions about what kind of society we want and what things we choose to fund, which people we choose to support.
I mean, I legitimately worry just from what we’ve seen with other conditions with prenatal tests, I think that’s what kind of worries me and concerns me from what we’ve seen with other countries.
Jill Escher: Well, of course I was talking about risk factors, right?
Jill Escher: I’m not talking about genetic testing or biomarker testing.
Eric García: OK. Forgive me, forgive me.
Jill Escher: No, no, no. But they’re related, right? Because they both kind of go to the question of prevention. But we’re not even close to doing genetic testing, really, for autism now. Will it be on the horizon that someday you’ll be able to take a genetic/epigenetic test, you know, of your fetus and be able to determine with certainty like you can with Trisomy 21, which is Down syndrome? I mean, it’s not in the near future. Super speculative.
Eric García: I’m sure Jill, you saw the Reuters report that showed millions upon millions of dollars being canceled in autism research grants? I think what I worry about is we are in a moment where we might be seeing more money toward — money that should be going toward, like you said, those biology resources, things like that. And I worry that way that it might be going toward quack or crank research. I think that’s what I worry about.
Jill Escher: Oh, well that’s a very legitimate concern. I would agree with you on that. I’m very worried that we will see movement of autism research dollars going to questionable hypotheses. But the problem is that there are so many questions that remain to be asked.
We still need money going into autism etiology research. However, we should not be duplicative. We should be looking for novel hypotheses that are very biologically plausible, and help push research in new directions, because we’ve been spinning our wheels for about 20 years.
Anna Rothschild: Can I jump in for a moment?
Jill Escher: Hi, host!
Eric García: Hi, Anna! Hi, how you doing Anna? I’m so sorry, Anna.
Anna Rothschild: It’s actually really interesting because it seems like the two of you overlap actually much more than potentially I thought, given the conversations I’ve had with each of you. So that’s really encouraging. I do want to acknowledge, though, one point of difference, I think, which is that you have very different opinions about whether there has been a real rise in autism cases. And I don’t want to get into the specifics of that because I don’t think that in this podcast we are going to actually solve that question.
Eric García: Neither of us are researchers. Neither of us have Ph.D.s.
Anna Rothschild: Exactly, and so I think that we should just acknowledge the fact that you have differences of opinion here.
Anna Rothschild: And you’re looking at the same data and drawing different conclusions. What I am curious about, though, is how much that belief, whether we’re seeing a real rise or not, underpins where you think funding for autism should go. So Eric, if you actually thought that we would find an environmental or epigenetic cause of autism or causes of autism …
Eric García: Sure.
Anna Rothschild: … risk factors for autism, would that in any way change your opinion about investment into research for cause?
Eric García: You know, it really wouldn’t because what it would just say to me is that we should be doing the same things that we always do whenever there’s corporate malfeasance. You know, if there was actually like, let’s say for example RFK Jr.’s completely right — and it doesn’t look like he is — that it’s environmental toxins that are causing it.
I wouldn’t be opposed to banning certain types of chemicals any more than I would’ve a problem with banning chemicals that cause brain damage or changing out lead pipes like we saw in Flint, Michigan. If they’re knowingly ignoring these studies and they’re just continuing to pollute, then they should be fined by the EPA, just like any other organization — that doesn’t negate whether we should accept or welcome people with disabilities just the same.
Anna Rothschild: And so, I know this is all hypothetical here, but would you think that there should be more investment in that research to actually nail down what the etiology is?
Eric García: You know, I think it would depend on what we find out. I don’t know if that’s the right way to invest. I mean, if you happen to come across it, if you see it, then, you know, fine. But like, I don’t think that that’s the right way of spending because if I can reorient a little bit.
Anna Rothschild: Here, Eric mentioned that big funding study again — the one showing that altogether, only 12.7 percent of autism research funding goes to services and supports and to helping autistic people as they age.
Eric García: I’m not opposed to biological or even looking into what maybe causes it, but when you look at just the combination of services and supports and lifespan issues, that’s a drop in the bucket.
And we’re just not seeing the best research to support long-term, quality of life for high-support needs, low-support needs, intellectual disabilities, non-speaking, speaking, anybody — we’re just not seeing the investment.
Anna Rothschild: Jill, how does that strike you?
Jill Escher: Well, I’m glad that he’s open to the importance of continuing our quest to identify autism risk factors. And I can understand that it’s really unclear right now what those might be.
He is also correct that we need much more research to better understand how to serve this population because we don’t have the infrastructure right now available to serve them, and this is especially true with the more severely, more profoundly autistic population. So yes, we need to understand: What is the scope of this population? What is the intensity, the complexity of their needs? What are the efficient and effective ways to deliver services over the lifespan, particularly as the parents age and pass away?
These are very much unanswered questions. We are kind of grasping at straws right now through our Medicaid and other systems, and it requires really a much more focused effort so that we can plan, we can prepare. It’s very, very important.
Eric García: Yeah. At the risk of not making an entertaining podcast, Anna, like, believe it or not, Jill, as much as we disagree on a lot of things, I think we found a lot of points of agreement on this.
Anna Rothschild: I want to jump back for a second. Jill, you kind of think that we can do two things at once. We can walk and chew gum at the same time.
Anna Rothschild: We shouldn’t have to pick between looking for cause or risk factors and also providing better care for autistic people today, better services.
Jill Escher: Both are needed. Exactly. I think, you know, an ounce of prevention is worth a pound of cure, and that’s very, very, very true. My kids will be an enormous — as much as I adore them to absolute pieces — they will be an enormous economic burden over their lifetimes. And that’s just truth.
Anna Rothschild: Here, Jill began talking about her son.
Jill Escher: I’m going to come out now and tell you guys, between what we privately pay and what the Medicaid system and other supports pay for him, he probably tops $350,000 a year. So people might flip out when they hear $350,000 a year for one autistic young man; I want to assure you, this is common. That kind of cost is common and in many cases pretty cheap.
So if you’re just looking at this from a pure bean counter point of view, there can be almost nothing more imperative than reducing the risk for autism across the population because these costs are completely unsustainable. We are already being crushed.
Anna Rothschild: I wanted to get Jill’s opinion on a more personal part of Eric’s point-of-view. That in some ways, research into prevention could lead to the loss of autistic culture or identity.
Jill Escher: You know, identity is something that’s really foreign to our population because for our population, autism is a very, very seriously disabling neurodevelopmental disorder. It’s not an identity. And I think that putting identity before the realities of a disability is very problematic because it just tends to trivialize what our families are going through. I’m not saying Eric does this, by the way. I don’t think he does. But I do see this in the community a lot: That we elevate this idea of identity so high that it casts a shadow on reality and it obscures the reality where autism is not an identity.
I mean, if my kids were like Eric, I would consider them absolutely a hundred percent completely cured. And I’m not saying — I’m not belittling whatever burdens you have in your life, Eric. But I’m saying they are just completely different things and I think we have to acknowledge that and appreciate that, to have any real conversation about autism.
Anna Rothschild: It seems like a big part of the issue here, which we keep coming back to, is that we’re talking about a vast spectrum of different conditions here. Would different classifications sort of change anything about how you think about autism issues?
Jill Escher: Yes. What we really need is language that helps tie individuals with autism to what they need, right?
So this is, I think, a really hot topic right now, which is the autisms, plural, not the autism singular. And how can we serve this population better? We’re already seeing some progress. The term profound autism is very helpful, from an administrative point of view, to differentiate people like my children from people like Eric.
Eric García: At the risk of agreeing too much with Jill, I actually would somewhat agree. I think that the one thing that I would say about the profound autism label is I actually would like to chop up the definitions even a little bit more. I would like to see, like, autistic person who needs 24/7 support, or non-speaking autistic person who doesn’t need around the clock care. I would even, you know where I would go further is say, let’s be even more specific.
Jill Escher: Yeah. I have no debate.
Anna Rothschild: Great. You’ve both already answered this last question to some extent, but in a few sentences: Where would you like to see autism research and funding in 10 years?
Jill Escher: Well, my dream is that we actually start identifying risk factors, so even if we get to like 50 percent of the autisms or 60 percent of the autisms, that would be a massive improvement for public health and for scientific understanding. So I would like to see us get there.
Anna Rothschild: And Eric?
Eric García: I would love to see better diagnostic services so that getting an autism diagnosis is something that poor Black kids in northeast D.C., where I used to live can get services, and girls could get the diagnosis without having to jump through as many hoops. And I think what I would also want to do is I would want to see the research go to a way that could be used as an argument and a rationale for fully funding Medicaid services.
Jill Escher: Yeah, we need a much more robust services system. In 10 years, let’s hope we get there. You know, the other thing that’s going to happen in 10 years, unfortunately, is that a lot of the autism parents from sort of the leading edge of the autism bubble, they’re going to be dead. And I’m already seeing it all around me.
And we are going to have more and more, what I call autism adult orphans. And they’re going to need even more support than they have now. Adults who are disabled by autism will be an absolutely huge need and I hope in 10 years we make progress in finding those long-term care solutions.
Eric García: Where I would agree with Jill is let’s start researching that now so that this doesn’t become everybody’s pants are down 10 years from now.
Jill Escher: Yeah, that’s well put.
Eric García: X-rated. Anna, you’re going to get demonetized from this.
Anna Rothschild: Well, thank you both so much for being here. I really appreciate it.
Eric García: Thanks, Anna. And thanks, Jill, for hearing me out. And I hope I was as open-minded as you were.
Jill Escher: Yeah, thanks Eric. I’m sure we will keep in touch.
Eric García: Let’s do a tour of this. Let’s take this, let’s take this on the road.
Anna Rothschild. Yes.
Eric García: Let’s take this on the road.
Anna Rothschild: Alright Brooke. How are you feeling?
Brooke Borel: Wow. I was really struck by this idea at the end where they’re talking about the autisms, plural …
Anna Rothschild: Yeah.
Brooke Borel: … instead of autism. I mean, we use that term, right, for this condition, but we also talk a lot about autism being a spectrum. And I think that those two different experiences they’re talking about — where it is quite disabling and where it’s not, and it’s this sense of identity — it’s hard to even talk about the research that should or should not be done when there are such a vastly different outcomes for people who are categorized as autistic.
Anna Rothschild: I know, that was a big takeaway for me, too. Something that’s come up for me a lot as I have been working on this piece and having these conversations with Jill and Eric is this thing called the social model of disability. Do you know what that is?
Brooke Borel: No.
Anna Rothschild: So it’s this idea that disability is not an individual’s impairment, an individual’s problem. It’s that our society and our environment is actually what is disabling a person.
Brooke Borel: Hmm, sure.
Anna Rothschild: So if you can’t walk and you use a wheelchair, it’s not your inability to use your legs to get around that’s actually causing you to be disabled. It’s the fact that we have buildings without elevators in them and we have countertops that are too high for you to reach.
Brooke Borel: Yeah.
Anna Rothschild: Those are the disabling things.
Brooke Borel: And society is the problem, not the individual, but we treat it the other way.
Anna Rothschild: I think what Eric’s talking about is how do we transform our society to be accommodating of everyone? But I also really see Jill’s point for kids like hers, where it’s not like moving mountains and changing our environment and our society fundamentally would give these kids a completely different experience of the world, at least as we can perceive it.
Anna Rothschild: But I guess I just want to emphasize that “as we can perceive it part” because we’re not in their heads and in many cases they can’t tell us what would bring them joy or satisfaction. Right? So we don’t have a full picture of what their experience is.
Brooke Borel: Yeah. And when we’re talking at the policy level, like when RFK Jr. makes these sweeping statements, right, about autism and the autism epidemic, it just seems like what he is focusing on in that announcement is not actually what is at issue for the autistic community and for autism research in general.
Anna Rothschild: I think that that is somewhat debated because I think he’s shining a light on the most severe forms of autism in a way that many people really value. Jill felt seen by a lot of what RFK said about autistic kids, though she recognized at the same time that he was painting autism in a way that really cut out a bunch of people on the spectrum. But one of the things with RFK is there are a lot of people who really want more attention on this issue and I just think that many people feel that RFK brought the wrong type of attention.
Brooke Borel: Especially if RFK Jr. is focused on postnatal causes.
Anna Rothschild: Exactly.
Brooke Borel: Which sounds like that is not actually what the science is suggesting …
Anna Rothschild: Yeah.
Brooke Borel: … is contributing to causing autism. Right? So that, that seems like money not well spent.
Anna Rothschild: I know. Now, of course, we could probably do a whole episode on whether there are environmental causes of autism.
Brooke Borel: There’s an idea.
Anna Rothschild: I mean, I don’t think anyone’s saying that there are none, but how much environmental causes actually contribute to autism versus genetic causes. You know what I’m saying?
Brooke Borel: Yeah.
Anna Rothschild: So, if you out there in the audience would like us to do that, send us an email to entanglements@undark.org. We would love to hear from you.
[Music]
Brooke Borel: And that’s it for this episode of Entanglements, brought to you by Undark Magazine, which is published by the Knight Science Journalism Program at MIT. Our wonderful producer and editor is Samia Bouzid. The show is fact-checked by Undark deputy editor Jane Reza. Our production editor is Amanda Grennell. And Adriana Lacy is our audience engagement editor. Special thanks to our editor in chief Tom Zeller Jr. I’m Brooke Borel.
Anna Rothschild: And I’m Anna Rothschild. Thanks for listening. See you next time.
I get weary of beating this drum, but as a neuropsychiatrist immersed in this population I can confirm the hypothesis espoused in “the autism matrix” by Gil Eyal. Most of severe autism used to be diagnosed as retardation, now intellectual disability (ID). Autism sounds nicer to pediatricians and families and became overdiagnosed. Then it got funded and the diagnosis opened doors for services.
There may be a true increase in pure autism, more likely from asperger comingling, but we may never know as the data is hopelessly lost in
massive overdiagnosis.
It’s very clear that the two interviewees are talking about two different diseases even if they have to dance around that fact. Of course, as someone who was diagnosed with Aspergers, I was told it was a “syndrome” and not a “disease” because it had both pluses and minuses, but that just confirms that it’s wrong to lump everything under 1 name (and that includes removing Aspergers from DSM 5).
The use of the word “spectrum” almost feels like a canard; it feels like a really convenient way to tie together various concepts that may have no genuine reason for being linked together. Not to mention many things exist on a spectrum and yet somehow the word because become almost interchangeable with autism.