What I learned talking to MAHA moms

Was honored to be on the "Why Should I Trust You?" podcast

I have admired the podcast “Why Should I Trust You?” for a while. Brinda Ahdikari, Tom, Mark, and Maggie do a great job interviewing people about the breakdown in trust that has occurred in the US, mainly around public health. They also do special episodes where they bring on people who disagree, usually folks who ascribe to the Make America Healthy Again (MAHA) movement with public health professionals.

I was honored they asked me to be on a special episode about autism. I was on with Jennifer Phillips and April Robinson, both moms of children with autism who believe that their children became autistic after vaccination with their MMR vaccine. Also on was Rachael Bedard, who is a physician and writer and did an excellent episode of the Ezra Klein show that asked the question “Is MAHA the wrong answer to the right question?” Highly recommend. Rachael also just had a piece in the NY Times arguing for why Casey Means should not be confirmed.

Since I started talking to people in the leaders in the autism world, I came to realize that the conflicts in the autism community are very similar to the conflicts that we have in many other realms, including over science and academia in the US. The main conflict is whether the “real” autism describes people with high support needs and an intellectual disability (sometimes called profound autism) while those of us with lower support needs just have eccentric personalities. Or, the “real” autism is the whole spectrum, all one thing from eccentricity to impairment.

As someone who reads the science and talks to a lot of these folks — and as an autistic person who takes things very literally — my view is that both camps are right and both camps are wrong. It’s true that many traits are conserved across the entire spectrum, so the autism-is-all-one-thing group is correct about that. But it is also true that different subtypes can be seen in the genetics, so the advocates for profound autism as a separate category are correct that there are differences. However, the low support needs group also has a real genotype and phenotype, which means that trivializing it as all in our heads doesn’t work, either.

This is a very literal reading of it all where the current scientific evidence is prioritized. But I’ve learned from talking to people across the spectrum that their experiences are also real — and so are mine. Sometimes when I worry I might be imagining the whole thing, something surfaces from my past that brings it all back. Recently, a reporter at the News and Observer dug up a quote from me that was in the Charlotte Observer in 1982 when I was 18 and had just won a Rubik’s cube contest where I said, “I say the colors over and over in my head.” I certainly had no idea about autism or Asperger’s or anything else then, but that statement was waiting for me this whole time. Or recently when I was interviewing a famous autism expert, he commented on my “very direct questions” and that I “didn’t try to sweeten the pill.”

Similarly, the experiences that others have with autism are equally real and valid. And that includes parents who are taking care of children and then adults who have severe challenges. If they see their baby change when they get a vaccine, I could try to explain to them that there’s no evidence that it was the vaccine or that there is no plausible mechanism by which that could happen. But it would be pointless. Better to try to convince them that I am truly looking for the truth and to hope that one day they will want to ask me about it.

During the podcast, the public health scientist (Maggie) talked forcefully about how none of the research credibly supports what RFK and the MAHA movement is saying about vaccines. I said I agree, but elaborated further:

I think there’s another important issue here, which is that scientists prioritize scientific information. To us, that’s the most important information. But it’s not the only information and knowledge in the world.

There’s people’s experiences, there’s sociology, there’s politics, there’s religion. So we’re always making what to us seems a perfectly logical — but some people see as arbitrary — decision that we’re prioritizing scientific knowledge over everything else. But the experiences that April and Jennifer have had are just as valid.

And when we treat scientific information as always prioritized over somebody’s experience, then that just makes people trust us less. I used to be one of the people on Twitter yelling about, oh, the science says this, what’s wrong with everybody? But over the last couple of years, I’ve realized that it’s my decision to prioritize scientific knowledge.

Some people prioritize other things. And when I criticize that, that’s what causes them to lose trust in, in this case, science. So I agree with Maggie and what she’s saying about what constitutes an excellent scientific study in this area.

But I think that has to be considered alongside the experiences of autistic people and moms of autistic people and lots of other folks as we work our way through this.

So first we need to show people we are sincerely looking for the truth before we try to explain what it is. It’s frustrating to have to do this in two stages when we are so far behind on so many things. But if someone doesn’t trust that we’re sincerely looking for the truth, then we have to do is stop trying to convince them of our view on a specific topic right off the bat. As I said in a recent post about Agnes Callard’s book Open Socrates, a debate that has a winner isn’t a sincere search for the truth. A discussion where both parties are equally happy to be right or wrong is a search for the truth. So with folks like Jennifer and April, we’re better off trying to show through our actions that we are using scientific methods to find the truth rather than invalidating their experience. That doesn’t mean we can’t say that there is no evidence that vaccines cause autism or that no mechanism exists that would allow for that. It’s just that invalidating their experience is probably not a step towards convincing them of either of those things — and maybe their experience has something to teach us.

Leaving character limits behind

As I said on the podcast, I gave up Twitter/X now nearly two years ago. I went over to Bluesky for a while but gave that up also. The level of vitriol and polarization in both places makes it impossible to search for the truth. It’s a constant debate in search of a winner - and definitely not good for my way of thinking. My decision to get out of it coincided with beginning to explore the meaning of my autism diagnosis where I found how destructive that level of acrimony can be. I was more convinced I made the right decision when the 2024 election came along, because it demonstrated that snarkily shouting scientific facts didn’t change very many minds. Admittedly, we don’t have proof that it mattered the other way, either. In fact, recent research published in Science Advances supports the idea that the nature of online debates probably doesn’t have much effect on polarization.

So not everyone agrees with me that we should broaden the tent by first demonstrating our sincerity. After the election, when I started trying to write and talk about how science and higher education need to adapt in light of the results, people on Bluesky criticized me for drawing false equivalences and complying in advance, even though I stated strongly that Science’s principles would not change. No shade on them for continuing to double down, because, hey, I could be wrong and need to be just as happy if I’m proven wrong as I would be to be proven right. The folks who are fighting back in different ways are all part of the picture. It takes a village and we all want the same thing.

Ezra Klein has laid out compellingly why in politics, the Democratic Party needs both progressives like Zohran Mamdani and moderates like Abigail Spanberger. (Trump has already shown that Republicans need supply-side conservatives and MAGA.) Similarly, science needs people who are both passionately making the case and those who are trying to engage people who haven’t come in yet. And in the autism world, folks need to band together to work on the real problems, namely support and acceptance for everyone across the spectrum, rather than arguing about the words. So we need the neurodiversity movement and the high-support-needs advocates. The way to do that is not to reflexively invalidate anyone dealing with real struggles.

Let’s find what works.

Related ideas from historian Jill Lepore

Recently, historian Jill Lepore was on David Leonhardt’s opinion podcast series about the search for a the next American story. In talking about whether some of the criticisms of universities from the right were correct, Lepore agreed that we should take stock and consider reform.

The public shaming stuff, I just think it’s silly to deny that that existed, that it didn’t harm a lot of people, that it wasn’t wildly out of control in many occasions. Do I still deeply believe in the mission of higher education and that this is an institution whose value to the world in terms of its research and scholarship and the ambitions of education that it stands on, I think those are crucially important. But I think it just surprises me no end when people are like, well, there was really never a problem on college campuses.

I don’t know what college campuses they’re talking about. I think the place I put blame is quite different than the places that the right would put blame. I think the corporatization of higher education has been a real problem.

So I have a different understanding of what has gone wrong with higher education. But I just think the left has to admit that it has done a lot to make a lot of Americans feel like they do not belong.

There will likely be criticism of Lepore’s points as giving in to the administration. But I agree with her that we should be willing to examine how trust has been lost if we want to have any credibility when we try to earn it back. Whether her analysis is the right one, I don’t know, but I agree that the corporatization of the university is the root of most of these challenges.

Will it matter?

There’s plenty of evidence that more civil discussions might lower animosity and improve information sharing but are unlikely to reduce polarization or political violence. But maybe that’s because it’s a long slog. Maybe the first step is to convince people who disagree with us that we’re willing to be wrong in the face of the compelling evidence to the contrary - and that we would be happy if that happened! Then we might get a chance to share the evidence with our critics in an open way. We need to find out.

And while changing from debate with winners and losers to discussions that seek the truth may not change minds, it could lead to a way for people with differences to work together on things they agree on.

Ancient Greece didn’t have social media, but Socrates says that’s the way.