The Current - RFK Jr. is dehumanizing autistic people, says writer

Episode Date: May 1, 2025

U.S. Health Secretary Robert F. Kennedy Jr. says autistic kids will never hold a job, write a poem or go on a date — but writer and autistic person Sarah Kurchak says that simply isn’t true. She explains why the autistic community is so alarmed by RFK Jr.'s statements, and by his pledge to find a “cause” for autism by September.

1942, Europe. Soldiers find a boy surviving alone in the woods. They make him a member of Hitler's army. But what no one would know for decades, he was Jewish. Could a story so unbelievable be true? I'm Dan Goldberg. I'm from CBC's personally, Toy Soldier. Available now wherever you get your podcasts. This is a CBC Podcast. Hello, I'm Matt Galloway and this is The Current Podcast. If you took the US Health Secretary Robert F. Kennedy Jr.'s word for it, having autism is a terrible fate. Autism destroys families.

More importantly, it destroys our greatest resource, which are our children. 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 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 and we need to put an end to it. R.F.K. Jr. spoke while presenting a new study from the U.S. Centers for Disease Control and Prevention documenting rising rates of autism. He's promising to find in his words, a cause for autism. And he's hoping to do that by September. Robert F. Kennedy Jr. is a man with a very big megaphone and his message echoes outside of the United States, which worries autistic people here in Canada and their families.

People like Alison Garber, a mom in Bedford, Nova Scotia, her 15 year old son, Hugh is autistic and recently she sat him down to talk to him about Robert F. Kennedy Jr.'s comments. I had to read the comments. Nova Scotia. Her 15-year-old son Hugh is autistic and recently she sat him down to talk to him about Robert F. Kennedy Jr.'s comments. I had to look at look him in the eyes and watch him process this and the first thing he said to me was do you think I'll ever go on a date mom? Alison says Hugh tried to make sense of RFK's words. He said, do you think RFK junior is a bad person?

And I said, I don't know if I can answer that right now, Hugh. I'm going to need to think about that a bit. And he said, I don't think he's a bad person. I think he just needs to learn more about autism. When Allison first learned about Hugh's autism diagnosis, she admits that she was worried about his future. Now, 10 years later, here is what she wishes she knew then. My son and I will fly to Ottawa and he'll be sitting at a panel at the Canadian Autism Leadership

Summit, sharing his views and being braver than RFK Jr. could ever hope to be, showing more compassion, more grace. And I think I would take that over an ability to write a poem or play baseball any day. Like Alison, Sarah Kerchak has also been thinking a lot and has concerns about what Robert F. Kennedy Jr. has been saying. Sarah is an autistic person, a writer, and the author of the book, I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder. She's with me in our Toronto studio. Sarah, good morning. Good morning. When you hear RFK Jr. talk about autism

as he refers to it as a tragedy that destroys families, he ran down this huge long list of things that people who are autistic will never do. What goes through your mind? Well, I am, as someone who is a low support needs autistic or lower support needs autistic, both a part of this conversation and not a part of this conversation. I am part of the numbers he's using. I'm part of the wave of autism diagnoses because I was diagnosed in my 20s as opposed to when

I was a child. So I am part of the statistics he's using to scare people, but I'm not necessarily part of the sort of higher support needs, like scaremongering he's doing. I've done everything on the checklist of things he says that autistic people won't do. So it's not my concern personally that I am being dehumanized, but my concern is that he is dehumanizing other human beings who happen to share my neurology, but have more challenges in life.

And I do not want these human beings being treated as fear-mongering, as useless. And I just don't like the language around what makes a worthwhile human being. You could do none of the things on this list and still matter in this world and still need help and support and better than to be villainized by R.F.K. Jr. He talks about wanting to find the causes of autism. What do you think he's trying to do with that? My suspicion is that this is first of all

a smokescreen to get away from vaccines. Which is something that he's raised concerns about over the course of his career. Absolutely. I think he's muddying the waters a lot. I think a lot of people don't understand how clear the science is on this issue. the more he can say well, you know But what if we do our own research, but what if we study more?

It starts to make people lose faith in something that is obviously not perfect No medical intervention is but it is not causing autism. It is actually saving lives. Beyond that, my concern is that he is, whether intentionally or not, playing into rhetoric that starts to portray disabled people as useless eaters, and we know where it goes from there. Where does it go from there? Well, worst case scenario, we're talking about the sort of action T for Nazi child euthanasia movement of either willfully euthanizing disabled people who are considered not contributing to

society or just not giving them the supports they need and letting them fall to the wayside. You see, you see, you see a direct line or a slippery slope in some ways from that. Absolutely, I do. When he speaks about looking to try and cure or prevent autism, as somebody who lives with this, how does that strike you? Well, the most likely way they would ever be able to prevent autism is prenatal screening and selective abortion. We are never gonna have like a pill you can take, a therapy you can take that is going to quote-unquote

cure autism. It is a complex condition that presents in many ways that interacts with every other facet of your identity and being in this world. There's never gonna be like one size fits all cure. There are services and there are, you know, interventions we can take to make our lives easier, but that's not a cure. And also there is going to be no money or support for that as long as we are chasing this fantasy cure. What is wrong with trying to, you can imagine there are people who are listening who might say what's wrong with trying to figure out what the causes of autism are.? Maybe you need to plow money and research and resources into that. What's wrong with that?

My concern is that it is the primary way that we fund looking into autism supports beyond anything else and that we're not necessarily using it to better understand autistic people. The primary force behind a lot of this research and a lot of the discussion around this research does seem to be to prevent autistic people, which even if that were an admirable goal, there's a lot of us in this world. What are you going to do with us while you're getting rid of the next generations? We need help and support too. You ran through that list of things and you said that you've done everything on that list. He ran through the list of things that people with autism may not be capable or able

to do. People write poetry, people make a lot of money with jobs, people go and travel to Las Vegas, they go and see rock shows, they do all the things that you have done. You said in the past that people might consider you an autism success story. I think less so now in the past five years or so as we have more late diagnosed autistic people who hold corporate jobs. I'm a struggling freelance writer. But what does that phrase mean to you? To me, it seems that from the outside, I look like someone. I mean, I'm happily married. I have a lovely cat. I have a book, so people look at that and say, well, oh,

you must be fine in life. But I mean, it is a house of cards to a certain extent. I'm struggling in a number of ways in my life. I've built a small life that I can manage that I don't know how much longer I can manage. So even though, you know, I'm, you know, probably considered one of the good ones. And by the way, this is the first time I have checked everything on a list of things autistic people can't do. Usually when people say like, oh, autism is a tragedy, I can't do half the things on the list, too. I can't drive, I can't throw a football, you know. But, you know, if it all fell apart tomorrow, my life would still matter, my life would still have meaning.

My father is autistic. He is currently in a care home because he now has frontotemporal dementia, which is interacting with his autism. He matters as much as he did when he could still verbally talk to us. There is no one way to be a person. And I think anytime there's a checklist and there's a good autistic person or a bad autistic person, we're getting into some really dark muddy waters. The reality, and it's not to divide the two, but the reality is for some people and some parents

of children with autism, life is really hard. Yes. Right? And so in the context of that, if you're concerned about resources going into research, looking at causes or looking at how to prevent something, where do you think those resources should go instead? I think the resources should go to high support needs autistics first and foremost, whether that is in the form of 24-hour support care that is properly educated, properly funded with enough time off so that we're not looking at people who are burned out and could be potentially abusive. I think the research should go into looking at better help because a lot of the interventions

and supports that exist now are not great for a lot of people on the spectrum. Even stuff like maybe medium support needs autistic people who can hold a job. Maybe they need a taxi service so they don't have to burn themselves out on public transit. There are so many little different ways that we could throw a little bit of money at someone or a little bit more understanding at someone that could make so much more difference than, you know, chasing these imaginary cures and causes. How do you think attitudes around autism have changed in society? I think of shows like Love on the Spectrum. I don't know if you've watched The Pit.

Oh, love The Pit. There's a terrifyingly exciting program, but there's a doctor on the program that I think people believe may. I actually did just write about her for a time, yeah. Okay. I think she's a great autistic coded character. write about her for a time, yeah. Okay. I think she's a great autistic coded character. So that's really interesting.

And those are prominent characters in prominent programs. Are we broadly as a society thinking differently about this now? I think people love autistic people as characters. I'm not sure how much that translates to real life. What does that mean? We're very entertaining in the abstract for a lot of people. Like they love watching us on TV shows be sort of like, you know, detached super genius in the Sherlock mode or starting to get more empathetic into the characters like Mel on the pit or the

actual human beings who are in reality shows like Love on the Spectrum. But the thirst for that entertainment is not translating into a thirst to be like, oh, these are real human beings who exist, who we could, you know, welcome into our own lives as part of life's rich tapestry. That you could do things as an employer to make people more comfortable, that you can figure out ways to... Absolutely. ... Yeah, change society to not adapt, but in some ways, to welcome more people in.

Absolutely. And you don't see that? No, I don't. Do you worry that the attitudes that are coming out of the United States, different countries, different healthcare systems, that they could leak into this country? Absolutely. I mean, the US influences Canada in a number of ways. I have never found the understanding of autism

in this country to be particularly sophisticated, so I think it could very easily be influenced by something as simple as RFK's list of things that only good human beings can do, that autism is going to ruin families over. What can we do to be more sophisticated in that understanding? Listen to autistic people.

And yes, also listen to the parents of autistic people, but keep in mind that as much as they can love and support their child and have needs of their own, they might not necessarily understand what autistic existence is like from the inside. And just operate from the assumption that no matter what else is going on, you are dealing with actual human beings here. And regardless of how much support they need or how little we understand them, humans, like that's what it boils down to for me. We're not some looming specter, we're not a nightmare, we're not just lumps who will never write poetry, we're human beings.

Sarah, thank you very much. Thank you. Sarah Kerchak is an autistic person, a writer, and the author of the book. I overcame my autism and all I got was this lousy anxiety disorder. She was with me in our Toronto studio. I'm Sarah Trelevin, and for over a year, I've been working on one of the most complex stories I've ever covered. There was somebody out there who was faking pregnancies.

I started like warning everybody. Every doula that I know. It was fake. No pregnancy. And the deeper I dig, the more questions I unearth. How long has she been doing this? What does she have to gain from this? From CBC and the BBC World Service, The Con, Caitlin's baby.

It's a long story. Settle in. Available now. Dr. Evdokia Anagnostou is a child neurologist and the co-lead of the Autism Research Center at the Bloorview Research Institute in Toronto. She's also with us in our Toronto studio. Doctor, good morning to you. Good morning.

What do you make of what you've just heard, not from RFK Jr., but from Sarah? I mean, it's very hard to follow up on Sarah, but yeah, this is the conversation, right? Autism is part of the diversity of the human experience. Sometimes it has high needs, sometimes not, and sometimes it fluctuates like the rest of us, right? Sometimes we thrive, sometimes we all experience disability.

Autism is not special in that way. It has particular characteristics, but it is part of that diversity of human experience. And first of all, when we pretend that the autistic experience is a single experience and we refer to it as one homogeneous experience, that is dehumanizing, right? We all have different experiences. So why would autistic people don't experience their autism and the rest of their lives in diverse ways? So putting them all in one category and as human we understand this is dehumanizing. And secondly, it is not helpful. It is not helpful to anybody. It's not helpful to people who need the help, and it is not helpful

to people who love them, and it is not helpful to the funding agencies and the people who make decisions to identify where the resources should go to support people to live a good life. And so he says he wants to find the cause of autism by September. Yeah. I mean, it's the beginning of May.

Is something like that possible? No. So we've been working on the causes and I will have a slightly different view on the causes question from Sarah, but I want to say what I mean by it. So the reason we're interested in causes is because we know there are many, many, many different versions of autism and if we understand the different biologies, the different versions of this condition, then the interventions are not one size fits all. Then we can start talking about what we mean by precision health, that we tailor interventions to the personal profile of a person,

whether this is their biology, which may be related to the cause, or their needs right now or their preferences. So that's why we care about causes. But we have been studying causes for a very long time. So some arbitrary deadline of September you think is not possible. Absolutely not realistic because we know what it takes and the investment has been significant to Sarasvoin and it's very slow. Can I ask you about some of those pathways of investigation? One is around gene. People have speculated as to whether there is an autism gene, for example. Is that a thing? Do we know whether that is a pathway worth investigating?

Yeah. So genetics is a very interesting pathway of investigation. Again, because it may give us ideas about the different kinds of brains that we see under the autism spectrum. There's no such thing as an autism gene. So depending on your point of view, we have either hundreds or thousands of genes to date that have been associated either with autism or with just neurodiverse development. Now, the reason we care about the hundreds to thousands is because to Sarah's point, some of these genes will predict that some people will get mental health conditions as they grow up.

We want to know that. We want to be able to pick these kids early on and give them all the skills required to prevent mental health distress later on in life. Some of them will get epilepsy or significant gastrointestinal issues. We want to know who these kids are going to be from the beginning, right? To be able to predict it so that we can put the medical system intervention,

the medical system teams around these kids and their families. Understanding these biological conditions can be helpful to think about how we intervene early on in ways that are more personalized. So he says that studying the genetic causes of autism is, in his words, a dead end. And he says that the cause of autism, he believes, is environmental toxins. Have a listen to this. This is a preventable disease. We know it's an environmental exposure. It has to be. Genes do

not cause epidemics. They can provide a vulnerability. You need an environmental toxin. He says it's a preventable disease. Is that the case? First of all, it's not a disease. But it's just the language that he uses. Yes. So we need to be very clear.

This is not a disease. This is a difference. And it comes with various levels to Sarah's point of needs. Some people have a lot of needs. Some people have not as of needs, some people have not as many needs, and that fluctuates across the lifespan. So this is not a disease, it is a condition, a difference. Secondly, it is very hard to think of it as a preventable condition because it's part of the neurodiversity of the human species. So unless we are getting

in a conversation about how to reduce the diversity of the human species, we should not be talking about preventing a difference. We can talk about preventing difficulties, severe needs, things that actually really impact people's quality of life, like mental health or physical health, or even for people who want to have improvement in the core symptoms, which is a bit more controversial, but some people do. So it's about preventing the things that are hard in life. It is not about preventing the difference.

What about the issue of environmental toxins? The NIH, the National Institutes of Health, is looking at this multi-million dollar research program to examine the spike in autism diagnoses. And they're looking at things like genetics, but also environmental factors and the way that the condition is diagnosed as well. Is there an environmental component to this? Yes. So let's talk about that.

So of course our genes speak to our environment to be able to interpret themselves in our bodies and in our brains. So the NIH has been spending a lot of money on environmental causes for a very long time. There is nothing new about an investment in environmental causes. And we have found that some things actually do increase the risk by a little bit. Things like exposures during fetal life, maternal diabetes or maternal obesity or parental age. We now have a small effect on the population risk. The actual effect to each child is extremely small, but when we look at the population level, they slightly increase the risk. There is also some evidence that certain environmental

exposures are bad for our brain. And I don't think anybody who's listening would find this hard to believe. Like if we expose ourselves to really high levels of pollution or toxicants, our bodies don't particularly like it, right? And our brains don't particularly like it. And so we know that there are some very small effects to brain development in general, not specific to autism, in communities where there is unacceptable exposure to high levels of pesticides, let's say, or high levels of pollution. But even in those cases, the evidence suggests that you have to have the genetic risk to be able to be vulnerable in terms of your brain development.

So I think it's important for us to be studying environmental exposures. The obsession to sow a very specific link to autism, rather than to say these things cause harm to our bodies and brains, is a very interesting phenomenon. One of the reasons why that obsession might exist is because in the United States,

he says there's been an increase in autism, one in 36 children in 2020 to one in 31 in 2022. Do we know whether a similar increase exists in Canada and what is that increase about? Yes. So the Public Health Agency of Canada has now funded a large study that looks at prevalence rates across the provinces, and our numbers are getting up there. I mean, depending on what province you look at, you will see some provinces getting close to that number and some not. Is that about just better screening and diagnostics?

So it's actually a bit complicated. So for sure, we have better screening, and for sure, we capture more of that spectrum that Sarah talked about, right? And for me this is not a panicky thing, it's a good thing. We want people to be able to meet their needs, whether they consider high needs or low needs. Can you imagine Sarah raised the issue of parents and the importance of actually talking to the kids as well, but that there are parents, I'm not talking about RFK, but there are parents who would say, we want to know what this increase is about. We want to know where this is coming from.

Can you understand that? Absolutely, and we want to, right? So we are modeling this all the time. Most of that we know it's because of we have changed our diagnostic criteria, we include more people in the spectrum, we screen better, we are starting to do better at picking up autism

in communities with structural disadvantage that before we're not getting autism diagnosis. So in some ways, the increase in the numbers is making us feel a bit better. We see a bit more equitable diagnosis. We see people who have lower needs at the time of diagnosis getting picked up. Now, we also want to make sure that we're not missing something that actually interacts with our genes, that systematically, even to a small degree, increases the numbers. That's why we spend time studying fetal exposures. That's why we're looking at obesity and diabetes prevention. That's why we're thinking about what to make of this parental age thing.

Like, we have pretty good evidence now that the older we have kids, the more likely we are to have an autistic child. But it is not that there is an epidemic. It is that we are capturing the diversity that exists in the population. And we do want to make sure that we're not missing something that interacts with our genes that systematically, for some kids, increases the risk.

There's a lot of money that is going into this desire to find the cause, the supposed cause of autism by this deadline of September. Where do you think those resources should be spent? We need to think about the money to go to every sector of our lives that predicts a good life. So that is education, that is health, that is supporting the families,

that's supporting autistic adults as they grow with housing, employment, recreation. Research, by the way, goes to all of these areas. Research is not just about health and making sure that we meet the priorities that actually predict a good life for autistic people. It needs to be a partnership. If our communities are not on the table, then whose needs are we meeting exactly? Dr. it's good to have you here. Thank you very much. Lovely to be here. a partnership. If our communities are not on the table, then whose needs are we meeting exactly? Doctor, it's good to have you here. Thank you very much.

Lovely to be here. Dr. Avdokia Anagnostou is a child neurologist and the co-lead of the Autism Research Center at the Bloorview Research Institute in Toronto and she was also with me in our Toronto studio. If you have any thoughts on this conversation, we'd love to hear from you. You can email us, thecurrentatcbc.ca.