Tangle - PREVIEW - The Friday Edition: Ari Weitzman talks with Jill Escher

Episode Date: January 3, 2025

In today's episode, Managing Editor Ari Wietzman talks with Jill Escher, an autism research philanthropist (Escher Fund for Autism), real estate investor who provides low-income housing for adults with developmental disabilities, former lawyer, and mother of two children with nonverbal autism. In this discussion, she highlights the increasing prevalence of autism, the frustrations with current research methodologies, and the need for more innovative approaches to understanding causation. Escher emphasizes the importance of exploring non-genetic factors, such as environmental exposures, advocates for increased funding and attention to these areas, and touches on the societal perceptions of autism and the balance between acceptance and the urgency to find answers.This is a preview of today's special edition that is available in full and ad-free for our premium podcast subscribers. If you'd like to complete this episode and receive Sunday editions, exclusive interviews, bonus content, and more, head over to tanglemedia.supercast.com and sign up for a membership. If you are currently a newsletter subscriber, inquiry with us about how to receive a 33% discount on a podcast subscription! Ad-free podcasts are here!Many listeners have been asking for an ad-free version of this podcast that they could subscribe to — and we finally launched it. You can go to tanglemedia.supercast.com to sign up! You can also give the gift of a Tangle podcast subscription by clicking here.You can subscribe to Tangle by clicking here or drop something in our tip jar by clicking here. Our podcast is written by Isaac Saul and edited and engineered by Jon Lall. Music for the podcast was produced by Diet 75. Our newsletter is edited by Managing Editor Ari Weitzman, Will Kaback, Bailey Saul, Sean Brady, and produced in conjunction with Tangle’s social media manager Magdalena Bokowa, who also created our logo. Hosted on Acast. See acast.com/privacy for more information.

From executive producer, Isaac Saul, this is Tangle. Good morning, good afternoon and good evening and welcome to the Tangle podcast, a place where you get views from across the political spectrum, some independent thinking and a little bit of our take. My name is John Law, and I am the executive producer for podcasts and YouTube. Today we have something a little different for you. Our managing editor Ari Weitzman sat down with Jill Escher. Jill is an autism and research philanthropist. Through her foundation, the Escher Fund for Autism, she promotes and funds research on the genetic toxicology of autism and related neurodevelopmental pathologies. She is the president of the National Council on Severe Autism, a real estate investor who

provides low-income housing for adults with developmental disabilities, a former lawyer, and a mother of two children with nonverbal autism. In her conversation with Ari, Jill goes into her journey into autism research, which began with her children's diagnoses. She talks about the prevalence of autism and how it's dramatically increased over the decades. She also talks about her philanthropic work that has supported innovative autism research and the urgency to find answers about autism causation. It was a

fascinating and illuminating discussion with a lot of interesting insights. So without further ado, here's the interview. We are here today with Jill Escher. Jill, how are you doing today? Fine, thanks for having me. I'm so excited to be able to talk to you today. One of the things that I think makes you my favorite communicator about autism that I read in the space today is that you

have a unique background. You're really good at communicating about prevalence rates of autism. And I've seen a couple of your presentations where you're discussing hypotheses about causation in a way that reaches me as a lay person differently than other people do. So I wanna talk about those three things

and start by digging a little bit into your background. So I know that you have a background not in medicine, but in law. So I wanted to maybe give you an opportunity to explain to our listeners how you got into the field of autism research. Well, I didn't get into it by choice. I have three children. My son, Jonathan, who's now 25, was diagnosed when he was two and a half. So that was in 2001. And in 2001, I barely had any clue what autism was. It's not a word that I really heard much about.

I'd never met anybody with autism, but he was diagnosed with really a kind of severe, classic autism at that time. And then my daughter, Sophie, who's now 18, was also diagnosed with classic autism at the time. It was called autistic disorder. So it's not something I'm like, oh gosh, I'm really interested in autism. I want to devote my life to serving people with autism and research about autism.

I mean, not at all. I was dragooned into it by circumstance. And I think that the great mysteries of autism are as huge today as they were in 2001, when I first, you know, became part of this community. I mean, obviously, we've learned some things, but I think the biggest questions have not yet been answered. So I'm very much devoted to two things. Serving my community, I'm past president of Autism Society, I'm still on the board here in San Francisco Bay Area,

and I help create more than 50 events a year for the autism community and do a lot of education and support. And then on the research side, Escher Fund for Autism, I fund autism research mostly, though not entirely focused on the issue of causation. And that's actually a good segue to my follow-up question that I have for you about your background, which is how would you describe your role in the research community for autism? Yeah. So I manage an independent philanthropic fund. We are not the Gates Foundation. We are not like mega donors or anything like that. It's a relatively modest fund, and we give grants every year that are pilot grants, i.e.

we are trying to spur innovation in autism research. We're trying to ask questions that nobody else is asking and trying to fill a gap in the research that the major funders are not filling. So we aren't the NIH, we're not the big, big autism research foundations like the Simons Foundation, which is the largest private foundation funding autism research. We are a niche operation. And like many people, I've learned about you from your July 2023 article in the free press, where you describe a little bit of some of your frustrations with autism research, which I'm going to give us plenty of time to get into later. But I'm also curious how things might have changed

for you since the publication of that article. If it's something that I read about, I'm sure many people read about it and contacted you with their questions or frustrations or interest and I'm curious what's changed since then. Yeah, good question. That article, I feel so fortunate to have had that opportunity to publish in the free press now twice about autism. It really seemed to strike a nerve in the community. I was inundated with responses, very, very supportive responses to it because it spoke very honestly about the struggles of the families, the severity of the condition in many cases. It spoke to the clearly escalating rates and the failure of

science to find answers about what's causing it. The failure of science to really identify, you know, more treatments. The failure of us as a body politic to grapple with the reality of increasing autism rates and this increasing population that will need lifespan care. I think so many people read that and said, yes, yes, yes, yes, yes, this is what we have to be talking about.

So I felt like it poked a little hole in the balloon of kind of the prevailing narrative, which is, oh, you know, autism is something that we're just noticing now, and we're just so much better at diagnosing it, I mean, it's not really increasing and blah, blah, blah, the things you read all the time.

And there's that common statistic, which I'm sure many of our listeners will have heard, which is that one out of every 36 people is diagnosed with some form of autism spectrum disorder. Not one out of 36 people. We have to be specific here. One out of 36 eight-year-olds. Interesting.

Thank you for that clarification. So that was a statistic that I know that I've read several years ago. Has that changed at all in the last couple of years? That was from the last round of CDC surveillance. So that was published actually last year in 2023, in March of 2023. And the next CDC surveillance is going to come out in March of 2025. We don't know what the latest autism prevalence number is going to be. But the CDC only looks at children.

They only look at eight-year-olds and now four-year-olds as well. They look at four-year-olds to give them a glimpse of what might be coming down the pike. But they don't surveil adults. And all indications are that autism prevalence among adults, i.e. especially older than age 35, is exceedingly low. All the available data we have really confirms that.

And every year what we have seen is increasing autism prevalence by birth year. So really the vast majority of people with autism are really now under the age of 21, a comparatively smaller group. Now as that bubble ages, right, we'll have more and more adults. We'll be right back after this quick break. And that it's a good way of getting us into that second big bucket of things I wanted to discuss with you, which is prevalence and how we know that autism prevalence is increasing. And I think there's a couple thorny issues that are associated with that.

One obviously is the difference between what some might call a severely impacted person with autism or person severely impacted by autism and then autism spectrum disorder. A lot of people have pushed back to say that we see more people diagnosed with autism spectrum disorder or ASD because it's being caught and diagnosed more, but that those two things aren't exactly the same and that there are statistics we can point to, such as the enrollment in special education classes in California that show that it's not just increased diagnosis of autism spectrum disorder that is causing increased incidence but that increased incidence of autism is real.

I wanted to see how, one, you would respond to somebody that's saying it's just overdiagnosis, and two, how you would help us disentangle the notions of autism spectrum disorder and severe autism. Okay, good questions. So there is a kind of a pervasive idea that the, well, first of all, let me start by saying So there is a kind of a pervasive idea that the... Well, first of all, let me start by saying that everybody agrees that autism prevalence

has dramatically increased. Everybody that the diagnosis of autism has dramatically increased. In the 1950s, 1960s, 1970s, even into the 1980s, we often saw numbers like 0.05 percent of children. That was pretty much the most common finding. 0.05 percent of children had autism. Then, starting in the late 80s, really more like the early 90s, schools, clinics, developmental disability systems, they all started reporting these increasing rates of autism. That baffled everybody, right? Nobody understood it, but we saw administrative

report after administrative report indicating this uptick at that time. Now today, we very commonly see, for example, what we just talked about, like one in 36. 3%, the latest numbers from a different CDC study show 3.1% of children have autism, okay? So we went from 0.05 roughly to three. Nobody really debates those numbers. What they debate is what they mean. Now there's a camp, a very vocal camp,

that says they don't mean anything because all we are doing is noticing and diagnosing more people or we're shifting people from, for example, an MR or intellectual disability category into autism, you know, or people who were just so mild that were never noticed before, but now we're slapping a label on them. Lots of different kind of rationales for it. Unfortunately, that is clearly wrong. Now, I'm not saying that that's not happening in some cases in some systems. It might be happening in some systems to some degree,

but most of the systems that are tracking autism are really using quite objective measurements and quite consistent measurements. And we see this not only in the CDC studies, like these epidemiological studies, we see it in school data, we see it in developmental services data. So let me give you an example. In the state of California, I'm in California, we had 3,000 cases of autism in our developmental services system in 1989. We now have 190,000 cases of autism in our system, 3,000 cases to 190,000 cases. And we do not include these high functioning cases. This is a developmental services system that only serves people with substantially impairing developmental disability.

All right? Most, I would say more than, maybe not more, maybe about half the people with autism aren't even counted in this system. So it's really clear. It's not subtle, it's not close. We see these dramatic increases and we see these same types of increases

in the school systems. Now we're seeing it now in social security, in Medicaid, where it's a pretty high bar for entry. You don't get this stuff just by feeling social anxiety or just by feeling being quirky. You have to have a very, you have to have a showing of substantial disability. So really, I mean, I can cite so many studies and in fact, I wrote a blog that invokes a showing of substantial disability. So really, I mean, I can cite so many studies and in fact I wrote a blog that invokes a lot of them if anybody wants to look at ncsautism.org for the blog. But anyway, comparing apples to apples over time, we see these staggering increases in autism that cannot be explained by any other factor. And many studies have

looked, they've looked to see, oh, are we just shifting the diagnosis from one label to another? And they've said no. There's some cases where there's a little bit of shift here and there over like a brief amount of time, but not enough to explain this increase. And I've heard you kind of rail against this notion that it's just over diagnosis, that there's this growing, in many ways positive trend of trying to be more inclusive and accepting of people with ASD that you've described as this, to paraphrase, this complacency monster

that sort of- Wow, you really did your homework. Well, it's a very interesting metaphor, this concept of this, this monster that's sort of eating the research or the the pipeline for research because we're trying to do a lot of work to be inclusive, if I'm paraphrasing that correctly, and that that sort of subsuming this need for more research, because we don't want to say, autism, autism is something terrible. We don't want to say it's a eugenic thing that we want to get rid of, but that

it is something that causes severe disability. So this inclusivity could be having this negative adverse effect of preventing us from doing research into causation and what's causing these higher incidence rates. I think that's one of the factors. So the complacency monster that ate autism, you're right, that's exactly what I called it. Because that's what it feels like. It feels like, you know, when in 2001, when I kind of got dropped into this rabbit hole, right, there was a lot of zeal for finding answers, right? People didn't look at autism like, oh, aren't you blessed?

You have a child with autism. It was like, holy hell, you know, what happened? And can we figure out what happened? Can we fix it? Can we cure it? Can we prevent it? There was a lot of urgency around the issue. And then what happened over the years was that narrative was replaced by this idea, a very false idea that autism is just a neurodiversity, that we're just noticing it should be celebrated, it's a different way of being, it's a different way of thinking, and it's not our job to prevent or fix autism, it's our job as a society to accept it and include it. And by the way, let me just be clear. I'm usually in favor of inclusion.

I'm usually in favor of anything that will improve the lives of people and families with autism. There's no question I've completely devoted myself to that. As I said, I organize so many events, I've organized bajillion conferences. I mean, educational materials, anything I can do to help the community, I'm organized bajillion conferences, I mean, educational materials, anything I can do to help the community, I'm in favor of. And so I get it, I do want acceptance.

However, that should not blind us to this absolute scientific and moral imperative to figure out what the F is going on. And you know, I feel very strongly that we have failed. Like, this has got to be one of the most spectacular scientific failures of our time. That we're now almost 30 years into this autism epidemic, and we still really have almost no idea what's behind it. And we're powerless to prevent it. I meet families with young children with autism all the time, and every time I am pissed off,

I am so mad that we haven't helped them, that we haven't given them answers. We'll be right back after this quick break. To push back a little bit, I'm curious how you would respond to the idea that if we are trying to phrase this as an epidemic, an autism epidemic, could that framing potentially be harmful to people with ASD who are struggling to try to find inclusion and acceptance? No. Listen, I can hold two concepts in my head at the same time. I can hold the concept that, you know, somebody might have a disability that's caused by something, and also the idea that that person with a disability

should be fully embraced, fully accepted, fully supported. To me, those are not mutually exclusive. And I don't understand why in the minds of some activists, those are mutually exclusive. To me, there's no rational reason why that should be. This is a little pet hypothesis of mine that maybe I want to test with you here, see what you think. What we do at Tango all the time is we deal with bipartisan framings of things. How you can see something as a left versus right divide or one side versus the other.

If you disagree partially with one person, it tends to pull you towards the polar opposite response. So as that relates to autism and autism research, my hypothesis is that it's possible. I could be a moderately informed person and I could be looking at these sort of crank-ish theories about vaccines are causing autism and we need to do more to research this cause that's driving this epidemic and we know that it's going to be caused by something we're doing and that the implication a lot of the time in public non-scientific discourse is that it's vaccine. So if I'm a moderately informed scientific adjacent person but not a person in science,

I might want to say I'm opposed to that camp. So what I want to do is say, no, it's not that vaccines are causing autism. In fact, it's not that there's some external factor at all. We haven't found that link, therefore it isn't something that exists. We know autism spectrum disorder is becoming more mainstream. It's just that we're over diagnosing, we're diagnosing correctly and we're under diagnosing in the past. So that's my hypothesis.

And I'm wondering if that's bleeding over a little bit into the way that people are funding research or talking about this in your circles. I think you're right. I think that the fear of the vaccine hypothesis has put people into a very defensive position, too defensive, right? Well, of course we know defensive position. Too defensive, right? Well, of course, we know vaccines don't cause autism, right?

That's been shown, and I talked about that in my recent article in the Free Press, you know, why that is. There's so many reasons, so many checkboxes, why vaccines don't cause autism. And we actually quoted that significantly a couple of weeks ago. So thank you for providing that. Oh, good. Oh, thank you. Thank you. But you know,

it's really scary to think about a reduction in childhood vaccination rates. It's scary to me. It's scary to me to think about any child succumbing to a perfectly preventable infection. Hey everybody, this is John, executive producer of YouTube and podcast content and co-host of The Daily Podcast. I hope you enjoyed this exclusive preview episode. We are now offering this podcast exclusively to our premium podcast members, along with our ad-free daily podcasts, Friday editions, in-depth interviews, upcoming new podcast series, bonus content, and much more. If you want to receive all that and give your support to help us grow Tangle Media, please

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Peace. Our podcast is written by me, Isaac Saul, and edited and engineered by John Wall. The script is edited by our managing editor, Ari Weitzman, Will K. Back, Bailey Saul, and Sean Brady. The logo for our podcast was designed by Magdalena Bacopa, who is also our social media manager. Music for the podcast was produced by Diet75. and check out our website.