In this podcast episode, EWG President and co-Founder Ken Cook is joined by author and journalist Eric Garcia to refute Health Secretary Robert F. Kennedy Jr.’s harmful and scientifically discredited claims linking autism to vaccines. They also discuss shifting the conversation around autism to focus on self-advocacy, inclusion, progress and respect.
Garcia is the author of “We’re Not Broken: Changing the Autism Conversation,” a book that explores how society can improve support for people on the spectrum through policy, education and health care.
Cook also speaks with Beth Rowe, a producer of “Ken Cook Is Having Another Episode” and mother of an autistic child. Beth discusses her experience navigating the confusing and often insufficient system of resources for those with autism and her previous misconceptions about autism.
Cook and his two guests explore what the Trump administration and the Make America Healthy Again movement are getting wrong about dealing with autism and what more effective and inclusive approaches can look like.
Ken: Hi, this is Ken Cook, and I’m having another episode.
This particular episode was brought about because of all the concern that has come up from some of the statements and some of the policy proposals that we've heard from HHS Secretary Bobby Kennedy, specifically his concern that autism is caused by vaccines and that he is launching an initiative at HHS — we will know what causes autism by September. Little unusual.
And one of the things we wanted to do was explore how people with autism were responding to this announcement. And we interviewed the guest today, Eric Garcia, author of an amazing book that we'll be talking about, We're Not Broken: Changing the Autism Conversation. But this also became kind of a personal conversation with my colleague and a friend and producer Beth Rowe because she has gone through this experience of learning what autism means personally because of a recent diagnosis of her son.
We've been talking a lot about these issues, talking a lot about reaction from people in the autism community, and the reaction's been varied and sometimes pretty intense. But I wanted to talk to you about it as well, Beth. So welcome to the show.
Beth: Hey, thanks, thanks for having me. Yeah, to echo your sentiments, Ken, I mean we were, like I mean going back to October of last year, we were at the EWG Verified® pop-up event here in New York, and we were recording some episodes. And I remember talking to some of your colleagues there about kind of what we were kind of going through as a family and what we thought was going to happen, which was going to be getting an autism diagnosis for my son. And I remember one of your colleagues said, “I think it's good that you're here right now doing this show.”
And I didn't really understand what that meant until later when we did the livestreams of the confirmation hearings. When I went to D.C. with you, we did those livestreams for RFK Jr. in his confirmation hearings, and he was talking about autism in a very ignorant way. As a parent of an autistic child, it felt — it didn't feel like we were having the conversation to talk about how do we make people's lives better. It didn't feel like we were having that conversation to talk about how can we create not only more opportunities for people with neurodiversity, but how do we actually do the exercise of inclusion, as opposed to just talking about diversity.
What the administration is now talking about now, which is how do we increase the birth rate in this country. And we're having that conversation without addressing childcare costs, without addressing a federal paid family leave for anybody. And I think when you have those conversations — whether it be about raising kids and having families or helping people with any kind of disability — if you don't talk about the infrastructure of how to make people's lives better and just talk about some other version of it, we're not getting the full picture, and we're not actually taking care of the citizens of this country.
Ken: Yeah. And if the goal is to make Americans healthy, one of the things we learned from our conversation with Eric — and I think we knew it going into it — was that the most important topic around autism is how can we provide the appropriate support to the families that need it, wherever their child might be on the spectrum.
I think that, you know, the reaction to some of what Kennedy has said comes from a place where people — particularly people with autism or parents of autistic children — feel like autism is kind of a prop for his anti-vaccine positioning. And you would think someone who's been talking about autism for decades in relation to vaccines would have a better vocabulary, a better grasp of how to talk about autism and what people's lived experience is. And, you know, your lived experience has unfolded while we've been doing this program.
Beth: Yeah, I think when you talk about something from one perspective, like if we're just focused on finding a ‘cure,’ quote unquote, for autism, and you're not talking about the whole picture — you know, how can we include all kinds of people in every aspect of society — we're only furthering the bias of what autism is.
We're not learning more about the people who have it. We're not learning more about how to navigate a public school system on behalf of your autistic child. We're not learning about social services. We're not learning about other aspects of it.
And I think one of the reasons why I had such a hard time kind of swallowing the pill of, ‘is my son on the spectrum; is my son not on the spectrum,’ was because I had my own bias about what it was and my own ignorance of what autism is because I didn't see how it made sense that that's where my son kind of fit in that box. Because it's not a box. Everybody is different; every person is different.
And so I wanna point this out that I'm coming from a very privileged perspective of diagnosis, of getting the support that my son needs. One of the reasons why so many people don't actually get an autism diagnosis early on is because the cost of it is so high. And so, there are a lot of resources available once you have a diagnosis.
But when I was speaking to my son’s special ed coordinator at his school, I said, “well, why aren't more people going and looking for a diagnosis that will unlock all of these other resources that insurance can pay for if people have insurance?” And she said to me, “because the cost of a diagnosis is too high for most people.”
Ken: Yeah. Outrageous.
Beth: Outrageous. But then once I go to a center, then, you know, they have financial aid. A lot of places have financial aid, but you wouldn't know about it. Nobody advertises for it. And if we're going to make people's lives better and give them more resources, we might as well find a way to make it easy to tell them about it, as opposed to spreading misinformation.
Ken: Yeah, and talking about, talking about autism only in the context of vaccines or what causes autism. It turns out that one of the areas that's been pretty well studied is vaccines, and the consensus is that vaccines are not causing autism.
But the thing that really disappoints me is here you have someone who's now not an advocate on the outside worried about vaccines, but someone who is our top health official in the nation. And as part of that portfolio, in fact, most of the portfolio at HHS is — most of the budget is — on services to help people deal with health issues. And the fact that Kennedy has, I've never heard him get up once and say, “here's our plan for helping parents like you, Beth, and others whose families receive a diagnosis, help them get the diagnosis, take an inventory of what we're doing to help families wherever they are, get them the help they need, the support they need.”
Eric Garcia's book is very, very clear. He actually defines the continuum of autism in terms of how much support is needed. And some children need more support than others. We had Shazi Visram on early on, my dear friend. And, you know, her son is in need of a great deal of support, and he will be for the rest of his life.
But why is the top health official in the country, who has platformed autism for decades as a focus of his concern, why hasn't he said anything yet about what HHS is going to do to provide the support that's needed across this continuum? He's, again, using autism almost as a prop.
The balance is often, I feel like EWG has kind of gotten it wrong too, 'cause I've met so many parents, you know, whose children are on the spectrum. I don't think I spoke up enough as an advocate about, you know, the important issue here is even as we investigate the science and the biology that might be left to explore, how do we help people in the real world who are needing support?
Beth: I mean, a lot of people get it wrong. And as Eric Garcia talks about in his book, even President Barack Obama got aspects of it wrong.
Ken: Yeah.
Beth: I'm quoting a friend Britt Hawthorne here, who's an anti-bias educator, but we don't really live in a society that says like, mistakes are welcome here. You can make a mistake and come back after you've learned some information and then make a different decision or say something differently.
For me, even when early intervention is available, the systems are so flawed. They're so overrun, and there's absolutely zero accountability. My son qualified for early intervention. His IEP was never uploaded to the system, so he went into school with absolutely nothing and no services lined up for him. And I thought they were doing the work on the inside, and it wasn't until he got to school that this same woman, who's my angel fairy godmother for my child, who's my son's special ed coordinator, she figured out what was wrong.
So even when the system is supposed to work, the system's not systeming. And at this point, as opposed to focusing on one aspect of autism, why are we not focused on every single aspect?
And it's not even just autism. It also affects every kind of learning disability or learning difference. And I talk about IEPs; you and I talk about IEPs, individualized education plans. And one of these teachers said to me, “I think every child should have an IEP.”
Ken: That’s right.
Beth: And the fact, we just don't have — even the kids who really do need an IEP the most, it's still not enough because there isn’t accountability to make sure that things are properly processed.
So, I'm like a hawk over everything that's happening with my child, and I'm constantly worried that I'm not doing enough, or I'm doing the wrong thing, and I should be doing something else. But I also don't think that's just being a parent of an autistic child; I think that's every single parent.
We were so moved by Senator Hassan's remarks about RFK during the confirmation hearings.
Sen. Hassan: I am the proud mother of a 36-year-old young man with severe cerebral palsy. And a day does not go by when I don't think about what did I do when I was pregnant with him that might have caused the hydrocephalus that has so impacted his life. So please do not suggest that anybody in this body of either political party doesn't want to know what the cause of autism is.
Do you know how many friends I have with children who have autism? The problem with this witness's response on the autism cause and the relationship to vaccines is because he's re-litigating and churning settled science so we can't go forward.
Beth: By listening to her, iIt was almost like we were missing out on the humanity of it. And we really wanted to have this conversation in a more humane way. And when we were looking at who we were going to bring on the show, we first started with autism organizations.
And it wasn't until somebody else on your team sent a New York Times article about a scientist who found out later in life that he was autistic, and through that article he talked about the self-advocacy network. And then you found Eric Garcia, the amazing journalist, author Eric Garcia. And through his book, he also talks about the importance of self-advocacy versus parent advocacy.
And I think as a parent, you want to just go straight into, I want to do everything I can to help everything for my kid. And another quote from Eric's book is, “I wouldn't change my son for the world, so I'm going to change the world for my son.” And I think that's kind of my ethos, and that's a lot of parents' ethos.
But one of the great things that Eric points out is he is a part of the generation that has received all of these social services that are very hard to come by. He benefits from them, and he has flourished because of them.
Ken: Yeah, and he had a mom that made sure that he got the services that were available, searched for them, found them. They were part of his life.
Beth: Yeah. He was so sweet, after the recording — and we'll get to it — he said, you know, use me as a resource for anything. Which was so beautiful and lovely.
And I'm lucky enough that I have a lot of autistic people in my life, a lot of autistic adults. And I think we're not going to become this culture that's anti-bias and much more accepting and inclusive, unless we hear from all of those people.
So, we can keep talking to me, but I think it's a really great time to pivot to Eric.
Ken: Yeah. And one of the passages that really moved me is something he wrote as follows. He said, “this book is a message from autistic people to help their parents, friends, teachers, doctors and researchers see a side of autism that they may not have previously considered. And it's also my love letter to autistic people who will see that we've been forced to navigate a world where all the road signs are written in another language.”
Beth, I like to think we're beginning to learn a little bit of the language. I know I've gotten it wrong time and time again, so I'm still very much learning. But it's the language that Eric wants us to consider to actually change the conversation about autism, the subtitle of his book.
So I open up my conversation with Eric by asking him to tell me why he thinks the conversation about autism needs to be changed.
Eric: Yeah, really great question. And it's really funny because — so I started writing about autism, God, really about 10 years ago.
Ken: Your National Journal piece? Was that the first?
Eric: Yeah, the National Journal piece. So background, I got my start working as a reporter in Washington, D.C., right out of college. My second job was at National Journal writing about politics and economics. And I was really happy to do that; I would've been happy to do that for the rest of my life. I'm still happy to do that right now. As you can imagine, I'm writing a lot about the tariffs. I work for a British newspaper, The Independent, so like, you know, it's a lot of economics, a lot of tariffs, a lot of trades, stuff like that.
It was interesting because I didn't really want to write about autism a lot when I was, when I started out. And a lot of it, it wasn't because I was ashamed or anything like that. It was just kind of like it was nobody else's business. I'm a very private person, believe it or not. Even though I wrote a book kind of about my life, I'm a very, I'm a generally very private person. But the thing that was really difficult for me was I felt that, at the time, almost every conversation around autism began and ended with vaccines.
And this was in 2015. And if you remember around that time, there was that outbreak at Disneyland, a measles outbreak at Disneyland because parents wouldn't vaccinate their kids. And it was kind of one of those things where I realized that every conversation around autism somehow got to vaccines.
And by this point, Andrew Wakefield's — the guy who had put out the bad study about autism that created this link between autism and vaccines — by this point, he had his medical license revoked. The original study had been revoked by The Lancet. This had been thoroughly debunked over and over and over and over again. And my feeling was this was just divorced from what autistic people really needed.
Because if you notice in the book, I barely talk about the vaccine stuff. And that's really intentional because I wanted to just put it up front and then move on.
Ken: Get it out of the way.
Eric: Yeah, let's just talk about it, debunk it, get out of the way. And so what I felt was we needed to move on not just from the vaccine discussion, but move on from like the discussions about curing autism and fixing autistic people and more focusing on helping autistic people live more fulfilling lives.
That was kind of the — I kind of just wanted to move the goalpost. This is already settled; let's stop talking about this and talk about other stuff that's really more important.
And I thought for a while we were moving toward that direction. And then what really happened, I think we can, we can all say, is it was Covid.
This is right when Operation Warp Speed was beginning, which like, the Trump administration deserves a lot of credit for, like just expediting the creation and the approval of the vaccine. It's a modern miracle of medicine. The Trump administration — I've said this before — deserves all the credit in the world for that.
But like what you started seeing was on some corners of the internet, people beginning to, these anti-vaxxers who had cut their teeth on the autism vaccine stuff, including RFK Jr., they started to sow doubt around the vaccine. And they already had kind of primed the pump around the autism stuff, so they created this kind of fertile ground.
And so now it's kind of ironic that, you know, in 2020 there was a move toward autism acceptance even by the time, in 2021, by the time my book came out. But then now we're kind of like, to your point, like we're kind of back—
Ken: Sliding back.
Eric: We're sliding back, absolutely. So, it's kind of ironic that now more than ever we need to talk about — that we're re-litigating this, and we need to talk about why we need to move on.
Ken: Now, and I think the ‘move on’ part of your book, I found myself profoundly shaped by your thinking there. And I'm just, the way the book is structured, you take a holistic look at the history of the autism conversation, how it has changed over time. That was enormously helpful to me; I didn't know most of it.
And then you also, by telling stories of autistic people in loving detail but with a reporter's eye for just calling balls and strikes, which I just, I love your writing style, Eric. So here's a quote again from the early part of the book.
“Each person's story will hopefully debunk various myths about autism. There are many: that autism is something that affects only white males; that autistic people with more support needs are somehow less human or valuable than autistic people who require less support like yourself; that autistic people should appear in the media only when they inspire hope or pity; that autistic people are incapable of holding jobs outside of the technology field, of having relationships or of living independently; and that autistic people” — this is where you end this point, which is so key — “that autistic people cannot advocate for themselves.”
And for decades, autistic people were left out of the advocacy equation. Can you say a little bit about that? That's the early, you cover it in the early part of the book. And that just really made me think through a lot of my attitudes and my approaches to this topic.
Eric: Yeah, I mean, it was really surprising to me when I was reading, when I was reading the history around it. And like, I read Steve Silberman's book, NeuroTribes, I read in a different key. I read a lot of different books. I went through a lot of old newspaper articles, like I read a lot of old New York Times articles about autism and how it was portrayed.
What was interesting to me when I was reading through this was that because autism had been so misunderstood, until 1980 considered a symptom of schizophrenia. So, and it didn't get a separate diagnosis from schizophrenia until 1980 in the Diagnostic Statistical Manual of Mental Disorders. You remember, like, I mean, there was kind of a disability rights movement in the 1970s. There was like the Capitol Crawl, like, you know, the Americans with Disabilities Act. Because autism was kind of seen as a separate thing, it kind of got excluded from the larger disability rights movement.
One of the things that Jack Pitney writes about in his book, The Politics of Autism — which is a, it's an academic book, but like, it's really good if you want to understand more about the political history of autism.
Ken: Next on my list, for sure.
Eric: Autism didn't really get part of that, I guess you could kind of say that second wave of political activism in the 1970s. So like the 1960s is all about civil rights, the anti-war movement. But the ‘70s is all about, like, consumer advocacy movement. You know, Ralph Nader does Unsafe at any Speed; there's the environmental movement that like taking pollutants out. And then there's the 504 Sit-ins with the disability rights activists parking their wheelchairs in front of the 504 building in San Francisco with the help of the Black Panther Party.
All of that stuff, autistic people were excluded from because they were, because autism was seen as this thing that was caused by unloving mothers, refrigerator mothers. And I read about this in the book.
Ken: Oh, man. That’s some of the toughest parts of the book for me. But you're unflinching in writing about it, so thank you.
Eric: Yeah, it was one of the toughest parts to write about in the book — toughest parts to write about and to read all the old articles about. But like — as you can imagine — but like, the interesting thing to me, so like what it does — and I think that not only is it a really bad thing that causes so much guilt and shame among parents, there's also the policy aspect of it, which is that if autism is caused by unloving mothers, then there really isn't anything the government could do about it, you know?
There isn't anything, 'cause like, so you're seeing all these consumer rights movements or environmental rights movements or disability rights or civil rights movements. There's the Gray Panthers, there's the second wave of feminism, there's all these things that are happening in the 1970s. Autism, because it's seen as a mental deficiency, a mental illness, and people are all being institutionalized and warehoused in these state hospitals, it's not part of that larger, I guess you could say, second civil rights and liberation movement that happens in the 1970s. So it gets excluded.
Ken: Yeah, no, I thought that was fascinating. And even the conversation in the media about it, which directly shaped the conversation, obviously. And you distinguish between the publications that were targeting mothers and general publications. And the ones targeting mothers, you say, quoted a mother who called her son's autism diagnosis “a gun pressed against the side of my head.” She said that, “the world had just ended. Others talk about moving heaven and earth for their children.”
The whole description of the parental perspective that was, you know, of course, where it was love and driven toward the care and fair treatment of the child was one thing. But you quote Jim Sinclair here, “parents' grief did not stem from autism itself, but rather the loss of the child they'd hoped to have.
Eric: Right.
Ken: Oh, Eric, I gotta tell you, I just — this was profound for me.
Eric: Yeah, it was profound for me when I first read, when I first read Jim’s speech. And I still go back and read it regularly.
It was so interesting when I came across that study about comparing, like, parent publications versus general publications. And like, one of the things that was so interesting to me when I was reading about the anti-vaccine movement — and this is related because I'm trying to prove a point — is that it didn't surprise me that, with the exception of RFK Jr. — we can talk about him in a bit — for the most part, most of the anti-vaccine activists were women.
And that isn't an accident because guess who does most of the caretaking for children? It's women. It's moms. It's either moms, or it's nurses or educators or social workers or all the, like, feminine-dominated fields. And again, you know, that “gun pressed to the head” quote, like, that's such an emblematic way, is that it's this real kind of individualized thing, where it's like, this is the thing that happened to the parent.
And then you compare it to how other publications are talking about it, where it's like, this is a larger trend, these are kind of phenomena. It talks about, it talks about systems, and it talks about structures. Rather than trying to fix the structures around that fails autistic students, it's like it's this individual success or individual failing.
So like if your autistic kid succeeds, then you are a model parent. But if your autistic kid has trouble or is going through school or having difficulty in school or getting a job, it's like you are a failure as a parent. And like that is so not correct.
Because like — and I write about this in the book — it's like, literally the only way I began the diagnostic process — and I write about this in the book, and you know this — it's like literally my mom saw an ad in a newspaper when we were living in Wisconsin for like free pre-K screenings or things like that. And then they began the screening process. And again, this was like in the ‘90s where a lot of people just didn't understand autism. And then we moved to Sacramento, California, or the Sacramento area. And then it just so happened that my dad's boss's wife, like was like, worked at the superintendent's office.
So it was like, it was literally just, we got lucky after lucky after lucky after lucky. And so I think about like, well, not everybody is as lucky as we were. You know?
Ken: That's so key to your book.
Eric: Yeah, “wait, this isn't a failure of the parents.” And I think about how much guilt the parents have to have. This is about, there are these larger things that are going on that people really need to critically think about. So, that was really kind of the thing I wanted to drill in. And it's so funny how we — the messaging that we still send to parents.
Ken: It's complicated. And that's why I think your book is such a, it's such a guide to exploring all of these issues. It's chapter after chapter you talk about policy, you talk about it, you know, from the perspective of an autistic person who's become an advocate, and who's also a journalist. But “Work,” “Housing,” “Health care,” “Relationships,” “Gender,” “Race,” and then “What Comes Next?” These are the chapter titles, and each one of them I found very enriching in my understanding.
To be honest, I was inspired and I was schooled by it. Because I feel like in my profession, looking at the environmental impacts on human health, obviously impacts — neurological impacts — are common with environmental toxicants. Look at lead, look at air pollutants and so forth. And from that standpoint, I'm just curious to know, you're not saying that we shouldn't understand the biologic mechanisms that might be associated with autism or give rise to it.
And I'll quote Sinclair again: “Autism is a way of being. It's not possible to separate the person from the autism.” So the way you describe this is really brilliant, and it raises the question of how destructive it is now to be focusing once again on the link between autism and vaccines when there are so many more important issues to take up, such as creating a world that is supportive and accepting of autistic people.
Eric: Yeah, that was really what I wanted to do is I just wanted to — is that like, I'm not necessarily opposed to researching the causes. I'm not necessarily opposed to biological research or anything. I think that that's also a way to understand co-occurring conditions. I think it's a way to understand — heart disease is a big killer of autistic people. I think that we should even the pie out right now, so that we focus a lot on lifespan services and supports.
And I think that the point that I made is that this has been debunked multiple times by actual researchers and scientists, and people like researchers at the NIH who are, you know, getting laid off or getting furloughed, getting DOGE-d, you know?
Last week, President Trump tasked Robert F. Kennedy Jr. with looking into the increase in autism cases, and he said that maybe see if it's the shots, maybe see if it was anything. And he said to have it by September. I often joke, if you wanted to have a study, if you wanted to have the study done by then, he just needs to go to the NIH and talk to all the researchers that Elon Musk laid off.
But what worries me the most is that we're going to see more and more research dollars taken away from priorities that improve autistic people's lives and outcomes for them. And we're going to see more focus on vaccines or things like that, even though there's no link.
And what worries me the most is that, because look, so like someone like me who researches this day in, day out, you know, writes about this day in and day out, like, I know about what's going on. You know what's going on. But like, you know, let's be real. And I'm not insulting the intelligent people, but it's like when the head, the top health official in the United States says something, that gives it a degree of authority. And I'm not, you know, and that's whoever it is. That's Democrat, Republican, whatever.
So when the top health official, let alone a Kennedy, which carries an additional amount of weight, that gives it an air of authority and credibility. So for a lot of people, they see Kennedy, they see HHS secretary, they're gonna think, “oh, this is credible,” when it is not credible. When it has been thoroughly put into the trash heap. But, you know, we're apparently eating out of the garbage can anyway.
Ken: Well, the thing that really amazed me was how you talk through the personal struggles that autistic people have with tasks that we could fix. We could make life much more adaptable and supportive.
I mean, you talk about straightforward things like getting the nerve to ask for assistance, getting up the courage to do that. You know, at every stage in your career, at every stage in your education, where you came up against a bump, that it was hard for you to get over. And you sometimes ascribe it to luck. I'm gonna disagree with you a little bit. I think there's an Eric Garcia momentum there too. But the combination of those two often came down to having someone who could mentor you, listen to you, give you that just little extra bit of support.
And obviously people on the spectrum need degrees of support, but the focus on those needs and how we can accommodate them is where the Department of Health and Human Services should be focused now. And you have a great phrase, and I bolded it, I have it on my computer screen in bold.
“Many people see vaccinations as a conspiracy. It means they're unconvinced by logic and the reason of experts. They perceive the autism vaccine debate as an attempt to silence them for telling the truth, which makes it even more like catnip for people to pursue this link that scientists have pursued and have found non-existent.”
Eric: Yeah, it's kind of funny, isn't it? It's like the more that they get, the more that they get discredited, the more that it allows him to kind of have a martyr complex, isn't it?
Ken: Yeah. Yeah. I think if Kennedy came out and said, “yes, we did the study and there's no link,” I think he'd be rejected by most of the audience that he's helped create.
Eric: Oh yeah, no, they would behead him. He went to Texas, as you know, he met with the family of the second person who died in this measles outbreak. And he said like, you know, the most ef— he said something to the effect of, “the most effective way to combat measles is to get the vaccine.” And it was funny because like, if you looked at the comments, the MAHA people, the Make America Healthy Again people, and the MAGA people were livid.
Ken: They pilled him.
Eric: Yeah, they destroyed him. I'm sure if, like, there were a panel of scientists who said, “look Mr. Secretary, these are it.” And, you know, the scales fell off his eyes, and he went on, you know, I don't know, Fox News or whatever. And he said, “look, I talked with our best researchers, our best scientists. These are people, many of them, you know, maybe got their job 10 years ago when Trump was president the first time.” And he said, like, “these are experienced people. These are people the president trusts.” He would get beheaded, you know?
Ken: Yeah, that's right. He'd be rejected by the movement he was instrumental in creating.
Eric: Exactly, yeah.
Ken: That's the quandary we're in, isn't it? That people are nourished by this, the notion of this conspiracy. Right? They're affirmed.
Eric: Yeah, they are. I mean, you — the word “affirmed” is so perfect. You said it, you said it best.
One of the great privileges of this book is I've been able to travel across the country and meet a lot of people. What's funny is just when I meet a lot of parents, two things happen. One, when they get, their child gets an autism diagnosis, a lot of times they're just relieved. Like, oh my God, now we know what to do. You know?
But then the second thing is like, they have to go through IEPs, and they have to get lawyers for their kids to get Supplemental Security Income. They have to start putting their kids on waitlists for Medicaid, to fight back and forth with the school system to get the most basic bare-bones accommodations. And they're kind of just like, “help.”
Ken: Yeah. Yeah. You write about your mom a lot, reference her a lot. You had a mom that just, she took on making sure that you got as much support as was available and went the extra mile in getting that support for you. She had the expectation that her job was to help you to live the fullest life you possibly could.
And with the support she was able to connect you with and that you on your own then learned against some of your hesitancy to ask for, it just felt like, wow, Eric's story and the stories that you tell of the support systems working in colleges across the country, support systems, you know, amongst autism advocates who themselves are autistic — it opened my eyes to how we should really be focused now on autism and autistic people.
And it couldn't be further really from this obsession with trying to cure it as if it's a tragic circumstance to be cured instead of how do we make sure these resources are made available? That should be our focus now.
Eric: It absolutely should be the focus. And I think the way that you do it is that, like, just making these resources readily available.
It's funny, one of my really good friends and I — my friend Sara Luterman, who's an autistic journalist as well, she said that she almost wishes there was kind of like a PFLAG for autism. Like, legitimately, because, I mean, because I know a lot of people who have gay kids. And it was through knowing gay adults that they kind of, that they, that they understood, that they learned more about how to support their kids. And in the same way, I just, I would love it if there was a way for parents to connect with autistic adults to learn what kind of resources there are, what kind of tools they have, or what kind of supports.
Like, okay, first you notice your kid is struggling in school or whatever, whatever triggers it. Then you gotta go to a general practitioner, then you gotta go to a psychiatrist. Then you gotta get the actual evaluation. Then you gotta go take the piece of paper to the school. Then, you know, you have the back and forth with the school. Then you have to go to the Social Security office to get the, to get the — and then you typically, you know, they typically deny your benefits the first time, so you gotta go get a lawyer.
There's all of that, which is just getting the supports in place. But then there's also just the general part about being an autistic, like the parent of an autistic person, which is just like, is my kid gonna be okay? Like, are they just gonna be happy? Which is like what every parent wants, you know? They need to have these resources and lifelines to just know that their kid is gonna be okay.
And it's funny because one dad messaged me, or like, and I went back and forth with him. And he was just like, “what do I do for my non-speaking autistic kid?” And he said, like, “my son has, you know, around the clock care.” He’s like, “we're not in—” he wasn't necessarily in the best area for resources or supports. I didn't want him to despair, but also, I was like, “look, I can't lie to you. I can't tell you what's gonna happen with your son because we don't have the, we've never thought of what kind of resources he needs.”
It really kind of bummed me out because I really wanted to be able to say, “yeah, these are the things you, you know, these are the things that you could do. These are the, you know, where do you live? We can, we could do this, we could do that.” You know? But like, I wish there were resources. I wish there were these solutions.
But like, it was funny because like I said, “I don't want to give you false hope. I'm really sorry.” But he was like, “No, I appreciate you talking to me.” Just like having somebody be, somebody hear you is so important. I think that's kind of the value added, is that it's less like — just me saying “the system sucks,” just having that simple affirmation can go miles.
Ken: Yeah. No, I think that's right. And I'm probably being a little pollyannaish here, but my hope is that we can come out of the current conversation about autism, which is unnecessarily and in a way, tragically focused on the vaccine link, with a deeper understanding. I never, I never hear Kennedy talking about autistic people from a human perspective. It's always that they're someone who's been harmed and needs to be cured.
I came away myself thinking, you know, I have had a focus over the years. We were worried about thimerosal in the ‘90s, and when it was taken out of childhood vaccines, we thought, “well, that's, that's positive.” Not because we thought it was definitely linked to autism, we just thought, why would you put that much mercury in vaccines? And they took it out because they saw the levels were too high of mercury. But we never thought that the vaccines were really the issue at all.
But I just found myself thinking, going back over that history that, you know, I wasn't thinking about autism as part of someone's who they are. I was also thinking of it as a harm or a damage that needed to be prevented. And I think a lot of environmentalists still think that way, where we think about lead poisoning in kids, we think about other related damage that happens to people, but even that needs correcting.
And I've had people educate me, school me, and say, “look, we have to stop talking about kids who have been exposed to too much lead as somehow being damaged for life. They have a life.”
Eric: Yeah, they do. They do. And I don't talk about this a lot, but my — I almost never talk about it — so like, my uncle Danny was shot in the back and was paralyzed from the waist down. You know, a lot of people talked about what was taken away from him. And I'm not denying that. Yes, it was horrible. But he still had a, he still had a full life. He still had his siblings who loved him. He still had my grandmother. He still had —
And in the same way, I think that like, yes, we could talk about the damage that happens, you know, with environmental poisoning. I mean in the book, as you know, I go to West Virginia. There's a lot of people there who got, there's a lot of people who work in the coal mines who get black lung. And yes, that is a harm that was done to them by the coal companies. The coal companies knew that this was, that this was a dangerous thing to do. They did almost little to nothing to protect them, but like they still have a full life.
And I think that there's a way to talk about the injustice that was done with them while at the same time acknowledging their full humanity and their full agency as human beings. And I think in the same way, like with autism, like yes, there are significant challenges. Nobody like, look, I've had meltdowns, and I still have meltdowns to this day. Nobody likes having a meltdown. But I'm still a human being, and I still deserve full humanity.
And like in the same way, autistic people who require higher support needs and who deal with — you know, one of the biggest killers of autistic people is epilepsy, epileptic seizures, and like, yeah, death of epilepsy. Of course, we need to do more research into how do we mitigate seizures so that they don't kill people. But we don't need to take away their agency or their humanity or talk about it or frame it in a way that them being autistic, or this is a tragedy, that their very existence is a tragedy.
We could say that autism is something that's part of who they are. They wouldn't be who they are without it. And at the same time, let's look at the real challenges that they have. Spend a hell of a lot of money on how to reduce that harm and ensure that they live really good, that they live really good lives.
Ken: Yeah, it really is centering people in the equation of making America healthy again, versus looking to these external problems, which deserve a look. But when the focus goes away from actual people, which I think has happened in this administration, unfortunately, that's why you can have all this damage inflicted by threatening benefits, canceling grants, firing scientists. That's when you don't have people at the middle of it. And with respect to the debate right now on autism and vaccines, autistic people are not at the center of it.
Eric: They aren't. We’re all talking past autistic people instead of asking what autistic people need. If Secretary Kennedy wants to focus on making America healthy again, he would listen.
You know, one of Donald Trump's closest advisors is autistic, Elon Musk, you know? Secretary Kennedy's uncle Ted Kennedy was the author of the Americans Disabilities Act. I'm sure people in his uncle's staff would be more than willing to, more than willing to help, you know?
One of the big bummers with RFK Jr. is his dad, RFK Sr., one of the great things that he did was go to Willowbrook and show the stories of people who were living in, just in a hellhole.
RFK Sr: … at Willowbrook, that we have a situation that borders on a snake pit, and that the children live in filth, that many of our fellow citizens are suffering tremendously because lack of attention, lack of imagination, lack of adequate manpower. There's very little future for the children or for those who are in these institutions.
Eric: And it was just simply showing their humanity. That's what made his father this icon who — one of my personal heroes. RFK Jr.could follow in his father's footsteps and listen to people like his dad did and listen to people like his Uncle Teddy did, but he's chosen not to.
Ken: Yeah, no, that's right. He's really focused on this cure thing like a savior, as opposed to a care thing.
Eric: Yeah, exactly. And he's — just to be completely clear, like there are things that you could do to, you know, if you want to look at, if you want to look at government efficiency, let's look at eliminating the treatments or quote unquote ‘cures’ or things like that for autistic people and the grants that have worked and haven't worked. Let's look at what are the best ways to help autistic people transition from K through 12 to, you know, adulthood and eliminate the stuff that doesn't work. Eliminate the stuff that does work. Like, let's focus our research on the best outcomes.
America still is on the cutting edge when it comes to autism research. It's funny, I was talking with a professor. There's a really great book that's coming out. It's called Perpetual Children, and it's by Jonathyne Briggs. It's coming out. I can't wait to read it. He and I were talking about this on social media, and he was like, “yeah, it really worries me because America sets the standard that every other country follows. So even if you don't live in America, it should concern you.”
Ken: Yeah, no question. Well, Eric, you've been so, so generous with your time. I'm so grateful, my friend. It's an honor to spend time with you.
Eric: It's fun.
Ken: I loved your book. I recommend it. I'm gonna pitch it one more time: We are Not Broken: Changing the Autism Conversation. I guarantee you, if you read this book, you will appreciate why we need to change this conversation and why it's so important that we focus on the right things, which is creating the support systems that are not rocket science to create. As you described them, sometimes it comes down to just listening, caring, giving people more time, giving them a little bit of grace around executive function issues — straightforward things that, frankly, I think we would all benefit to be a little more human about.
Eric: Absolutely, absolutely. I really appreciate you, Ken. This is, this is so much fun.
Ken: Eric Garcia and Beth Rowe, thank you so much for speaking with me today. I also want to thank you out there for listening. If you'd like to learn more, please be sure to check out our show notes for additional links to take a deeper dive into today's discussion.
Make sure you follow our show on Instagram, @kencookspodcast, and if you're interested in learning more about EWG, head over to ewg.org or check out the EWG Instagram account, @environmentalworkinggroup.
If this episode resonated with you or you think someone you know would benefit from it, please send it along. The best way to make positive change is to start as a community with your community. Today's episode was produced by the amazing Beth Rowe and Mary Kelly. Our show's theme music is by Moby, thank you.
And thanks again to all of you for listening.