The Decibel - Let's talk about autism

Episode Date: September 29, 2025

Last Monday, the Trump administration linked Tylenol to autism and warned against pregnant women taking it — Health Canada says there is no conclusive evidence and continues to recommend acetaminophen to treat fever and pain during pregnancy. This is not the first time U.S. President Trump or Health Secretary Robert F. Kennedy Jr. have made controversial remarks on autism and what causes it. And some advocates and scientists are concerned about the wider impact this could have. Today, developmental pediatrician Dr. Melanie Penner joins the show to help us unpack the growing fixation on autism, why unproven links to its cause continue to resurface, and what we should be focusing on instead. Questions? Comments? Ideas? Email us at [e-mail] Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Tylenol during pregnancy can be associated with a very increased risk of autism. Don't take it. Don't take it. Last week, U.S. President Donald Trump and Health and Human Services Secretary Robert F. Kennedy, Jr. made a stunning announcement about Tylenol and autism. Today, the FDA will issue a physician's note. about the risk of acetaminophen during pregnancy and begin the process to initiate a safety label change. Health Canada says there is no conclusive evidence

linking acetaminophen, that's the generic name for Tylenol, and autism. Tylenol remains the go-to drug for safely treating pain and fever during pregnancy. Vaccines were also mentioned as a potential cause of autism last Monday, a claim that has been thoroughly disproven for years. It was like nothing I've ever experienced, certainly professionally, before. Dr. Melanie Penner was watching Monday's press conference. As it went on, I realized I had sort of transitioned to the fetal position on the couch. My husband told me that afterward, I had this thousand-yard stare.

Dr. Penner is a developmental pediatrician and senior clinician scientist at Holland Bloorview Kids Rehabilitation Hospital in Toronto. Her work focuses on autism and she was upset to hear about the way autistic people were spoken about especially by FDA head, Dr. Marty McCarrie. And if you've seen a kid with autism, with severe autism, it's hard to watch.

Kids get frustrated, they get angry, they can be crying because they want to speak and they can't speak. It's hard to watch. I just found it so distressing, disgusting, dehumanizing, that one's been hard to understand and cope with. The Trump administration has made unproven and debunked claims about autism before. This past April, RFK Jr. referred to autism as an epidemic, saying that many autistic people will

never pay taxes. They'll never hold a job. They'll never play baseball. They'll never write a poem. They'll never go out on a date. Many of them will never use a toilet unassisted. And we have to recognize we are doing this to our children. The way autism is being talked about in this moment has, I think it's fair to say, up to the stigma. And we want to unpack this fear and misunderstanding. So today, Dr. Penner is our guest. She'll tell us why we're seeing a growing fixation on autism.

Why unproven links to its cause continue to resurface? and what we should be focusing on instead. I'm Cheryl Sutherland, and this is the decibel from the Globe and Mail. Dr. Melanie Penner, thank you so much for being with me today. Thank you for having me. So Trump and RFK's goal has been ultimately to find a cure for autism or to kind of eliminate it is what they've been talking about. Is that misguided? What do you make of the way autism is being talked about right now?

I think there's a lot of language rooted in disease that is coming out. And it's so important to know that autistic people and also families have found that language to be incredibly harmful. And, you know, autism has been with us as part of our shared humanity as long as we've had a shared humanity. And so the idea even that it can be, and I don't love, or I actually really dislike this word, but eradicated, is not something that that is kind of true or possible, but it is dangerous to think about pursuing that and the things that could come from that. Tell me more about that. Why is it dangerous? There is a history of disabled folks being hidden in societies, being put into institutions where we know that the standard of living, the standard of care they received was far from humane and adequate. We've worked really hard to integrate autistic people, people who have other disabilities into our society. and I would hate to see us take steps backward from that.

So we have been hearing a lot about autism lately, and I think it is important that we understand it and demystified a bit. So before we go further into the significance of how it's being talked about and being framed right now, can you just define what exactly autism is? Yeah, so I think the first part is that autism is not a singular thing. Autism is a difference in brain development, but that seems to have various biological origins to the point that it's likely unique for each person. And then its expression or how it shows up in each person is also very unique.

So that's one of the first things to understand. Autism is what we call a neurodevelopmental condition. And so that means it has its own. origins in the earliest, earliest parts of brain development when that brain is sort of first connecting and wiring. And it continues to show up through development, but particularly starting in their early years, even though some people may not kind of experience the full effects of that until later on. There are two main clinical categories that we think about with autism. So the first is called social communication. And that's really how we interact with one

another. That can be with our words. It can also be with our body language like eye contact, facial expressions, gestures. It's how we play back and forth. It's just the basics of forming relationships. And then we also have this category called restricted and repetitive behaviors and interests. And so here it's a bit of a grab bag, but we see some things like how autistic people might move their bodies in a different way. So like flapping their hands. We see repetitive speech and we see a strong drive toward things kind of staying the same. We see passionate or intense interests. And then we also see sensory differences. So we can see things that bring a lot of joy and interest in the sensory world, but also things that can be more uncomfortable, such as bright

lights and loud noises. I'm glad to brought up the word joy because I think that the news we've been hearing has been so negative. And to hear you say joy, I think is really important. I think autistic joy is tremendously important. And it's an important part of validating the humanity of autistic people, that autistic people experience joy, love, pain, regret, all of these, you know, human emotions. It may occur differently. It may look differently. But they certainly do experience joy. And I think some of the ways that autistic people can, certain autistic people, can pick up on things in our environment that the rest of us might kind of walk past. There's something I'm a bit jealous of there sometimes. And you mentioned this idea that autism is different

for everyone, basically. This is where it comes into autism spectrum disorder. So can you describe the different kinds of experience of autism and how that corresponds to supports and level of needs. Yeah, so there are a wide variety of levels of support that autistic people need. And the other thing here, too, is that that level of support can vary based on the environment. So an autistic person who is able to say, go and give a talk at a conference in a different environment, say, in a room that's really echoy with lots of people in flickering lights, what you thought their support needs were in one context are not the same as their support needs in another context.

Yeah, they can change. No, there are a number of autistic people who also have co-occurring conditions, and those include things like intellectual disability, which can affect someone's thinking skills and their daily living skills. And so autistic people who also have intellectual disabilities will need more support through their life. And there are certainly a group of autistic people who need 24-7 support, who rely intimately on their caregivers. And we need to make sure that all of those support needs, all of those presentations of autism are represented in our discussions. Do we currently know about what causes autism?

So I think even when we're saying what causes autism, it kind of limits our imaginations a little bit. And it almost takes us into a frame of like, okay, there's going to be one thing that we're going to land on. And that has not been the case at all. And so we know genetics play a huge part in autism. We know that autism tends to run in families, that if you have one autistic child, your likelihood of having a second autistic child is higher than the rates we see in the general population. There have also been studies looking at environmental effects, and so things like living close to highways, preterm birth, and then certain medications in pregnancy, so valproic acid is an anti-seizure medication that has. has been more conclusively linked to a likelihood of autism. Okay, interesting.

So there are genetic factors, environmental factors. These are associations, not things that cause autism. So there's no single thing that causes autism. The environmental factors that have been linked with autism are actually really challenging to study because we can't just isolate one part of your environment. And then we do sometimes end up in situations where we're trying to figure out what is a statistical association. Is there a potential confounder here? So statistically that means that we think we're studying one thing, but the people who are more likely to do that thing also do this other thing that can, that is actually the true link.

So all of these things when we put them together, we really need to be cautious when we're looking. at things that have been just statistically associated with autism. There seems to be quite a focus on what women do during pregnancy when it comes to looking at the potential causes of autism. And, you know, there's so many things when you're pregnant that you're already, like, thinking about, right? And then there's this added layer as well. What's really interesting in this story is that it actually goes back to the very first

descriptions of autism in some ways. And so Leo Canner, who first described autism in the late 40s, also made a note that many of the children that he saw had professional mothers. And then this sort of evolved over time into an idea that mothers who were too cold to their children or refrigerator mothers were the cause of autism. And so we actually have a very interesting history here where there have been repeated times where the focus has been drawn to what a mother has done and how this resulted in autism. And in my clinic, when I'm giving that diagnosis, I sometimes see moms and I see them, it's almost like you can see them start to go back in their minds and think, What did I do? What did I do? And so in that moment, it's really important for me to say to them, there is nothing that you did or did not do as a parent that caused this. There are so many ways, right? That during pregnancy, people change their lifestyles dramatically and to kind of add further emphasis, shame, guilt, worried to that period of time.

I just think is incredibly harmful. We'll be right back. How many people have autism in Canada or in North America? Do we have a sense of the numbers? Yeah, so some of the best numbers have come out of the U.S., where they have pretty good infrastructure in place to monitor the prevalence of autism, and then to do that over time. And so their latest numbers that came out

that reflect data reflected in 2020 show that one in 31 children is autistic. Okay, right. I also have some numbers here from Canada, according to a 2019 Canadian Health Survey, one in 50 Canadian children and youth aged 1 to 17 were diagnosed with autism spectrum disorder. So that's like about 2%.

So we've been hearing a lot of about the rates of autism rising? First off, is that true? The rates of autism diagnoses have been rising. It's an important distinction. Yeah, tell me what the differences there. If you take the view that I do, that autism has always been with us. Right. You know, I think that what has changed, or at least the vast majority of what has changed, is our ability to recognize autism, to recognize autism in the various ways. it can present, to recognize autism in groups that were not part of the original description. So in racialized communities, in girls, in gender diverse people.

So to me, the increase that we see in these rates of autism is actually a good news story. It's the product of a lot of hard work on autism awareness and also on autism acceptance. And I imagine, when you say a good thing, I imagine that, you know, when the diagnoses are rising, that people can access care for themselves now that they know that they might have autism. Yeah, people can access care. I mean, access to autism care is a challenging issue all itself. And I think that our systems have often lagged behind these advances in awareness and detection. But I think the other benefit here is that knowing that about yourself, being able to understand perhaps why certain things are harder has been a real benefit to autistic people. And we have heard particularly from people who were diagnosed later in life about the damages that have come from not having that understanding about themselves. Okay, so we've heard about the first diagnosis of autism, which was in the 1940s.

So how is our understanding about it or how we address it? How has that changed? I think initially there was a big push to, first of all, understand what this thing was. There has been a recognition of the vast number of ways that autistic people can both need support but also can contribute to our, you know, diverse and throttes. society. I also think that part of what has changed has been the idea that the goal should be to normalize an autistic person or that the ultimate goal should be assimilation. And I think we have made some wonderful progress in that way of saying, oh, like, how can we honor what you have to contribute? How can we make the world maybe just a little bit more comfortable for

you. And still, I think there's still a need to support the needs within that. But certainly instead of making autistic people fit into the more neurotypical mold of society to think about promoting inclusion instead. What do you make about this moment that we're seeing this kind of fixation on autism and attempting to cure it or eliminate it? What do you make of this moment? It feels like going backwards. I'm a nittle. And one of the images that came to me on Monday was like if I thought about my kind of career as like knitting a sweater or scarf or something, you know, it might take a while, but I had an idea of what I was sort of working toward. But all of the sudden, it just felt like someone was at the other end of it and just pulling on the thread and unraveling a bunch of work. And I started to wonder, it's like, oh, can I knit fast enough. Can I knit faster than this thing that's being unraveled? And so it just felt like, you know, we were moving away from that goal of celebrating the many ways that autistic people

can be in our world, perhaps moving back to some of that drive for normalization and assimilation. And yeah, that was heartbreaking for me. Do you think this is a kind of backlash? I do wonder, you know, if when people are being asked to do something differently, so when you're being asked to accommodate someone else's needs, when we're making some progress in terms of inclusion, there can sometimes be a reaction to that. And so, It is possible that there's something kind of reactionary that's happening here. And, you know, we're just going to keep on fighting for those values of inclusion and respecting the dignity of autistic people's right to exist in our society. So this attention on attempting to find a cure, if this is not what we should be focusing on when it comes to autism and research or funding it, what should we be focused?

focusing on? I think it's important to know that there is some variability in the autism community. There are autistic people who do think that seeking out treatments specifically for autism is what they want. And so I do think we need to acknowledge that there is some diversity within the community that way as well. I would I think one of the things that we need to to focus on though, you know, we used to have these recommendations that were like every autistic child needs 40 hours a week of this intensive behavior intervention and this was this cookie cutter recommendation that we made for for everyone and when we've looked at the evidence over time it actually hasn't borne out that

it supports that where we are now is kind of saying okay well what do we do and I think the answer as we go back to all of that variability we have in this term autism is really digging in on what works for whom. So as we factor in, you know, what is a child's underlying biology, but also what is their family structure? What are their social determinants of health? What neighborhood do they live in? Is there a way we can synthesize all of that information

with their kind of clinical picture as well to understand, you know, here is our recommendation for the, type of treatment or therapy that we think is the most likely to improve your quality of life and your family's quality of life. Why do you think people are afraid of autism? And what would you say to them? Like, especially a parent or seem to be parent, that might be afraid? There's always more questions to be asked when it's just being afraid of autism. in my clinic when I'm doing that diagnostic assessment, I can see that fear or parents express

that fear to me. It's like, okay, well, like, let's ask one question deeper than that. Like, what makes you afraid in this situation? And what inevitably comes out is that, you know, there's a shared thing across parents, right? We don't want our children to struggle unnecessarily. We don't want our children to be discriminated against. When we dig down, that's often what is at play. And when they receive that diagnosis, it kind of shakes that foundation of what they anticipate it.

And there can be a lot of grief that goes along with that. And that is a valid feeling for families to go through. A lot of the earlier autism narratives, and I think particularly when this vaccine hoax got thrown into the mix, were that there was a normal child trapped in an autistic body. And families were, I think, understandably desperate to try to access that. But as we've listened to autistic people, you know, autism is at the core of their being. It's how they view and interact with the world. And so those narratives have been, have been, unfortunately,

They've been damaging to autistic people. One of the very first autistic advocates, his name was Jim Sinclair, and one of the things he said was, as he was talking about the grief that parents can go through, he said, don't grieve for us. Grieve for your own lost dreams, but don't grieve for us because we are still here and we're waiting for you. The remedy is not getting rid of autism. The remedy is how do we set this child up and how do we set society up in a way that makes their thriving possible and likely?

I think it's a great note to end on. Dr. Melanie Penner, thank you so much for coming on the show. Thank you so much. That was Dr. Melanie Penner, developmental pediatrician and senior clinician scientist at Holland Bloorview Kids Rehabilitation Hospital. in Toronto. That's it for today. I'm Cheryl Sutherland.

Kevin Sexton mixed today's episode. Our producers are Madeline White, Mikhail Stein, and Ali Graham. David Crosby edits the show. Adrian Chung is our senior producer, and Angela Pichenza is our executive editor. Thanks so much for listening, and I'll talk to you tomorrow. Thank you.