Lily Wagner on researching, diagnosing and treating autism

In other medical news, the Waisman Center on the UW-Madison campus is a leader in research and care of people with autism. So what did professionals there think when this week, President Donald Trump told pregnant women not to take Tylenol as his administration warned of an association with acetaminophen and autism? At the same time, the FDA commissioner also announced the agency would work to fast track a folic acid metabolite called leucovorin to treat autism. Director at Waisman Center’s Autism and Developmental Disabilities Clinic, Lily Wagner joins us. And thanks very much for being here.

Lily Wagner:
Yeah, thank you for having me.

Frederica Freyberg:
So first to the announcement that Tylenol use in pregnancy is associated with autism in children. Is that true?

Lily Wagner:
I think the best answer that we have, and that we can tell patients of ours confidently, is that the really good science and good studies do not support that Tylenol causes autism. We do have decades of research showing that things like maternal fever and pain during pregnancy can have significant risks, including some developmental delays or differences. But, but no, there’s, there’s no evidence of a causal relationship at this time.

Frederica Freyberg:
So what kind of calls has your clinic been getting from families about this?

Lily Wagner:
Yeah, I think, as you can imagine, we have a lot of moms who are feeling a lot of different things right now. Very distressed. Very — a lot of guilt, a lot of worry about this. And I think one thing that we’re trying to tell families is that they don’t have to make the decision about whether or not to use Tylenol by themselves. You know, we were trying to really encourage them to reach out to their trusted health care providers, their pediatrician, their own personal doctor or obgyn, and have them walk them through the studies that are showing these associations and walk them through the recommendations that are put out there by professional organizations because, you know, it is so confusing, all the mixed messages out there. They should, they should be able to get guidance from people they trust.

Frederica Freyberg:
The number of children diagnosed with autism has been on the rise. Do researchers know why?

Lily Wagner:
Yes. So the newest prevalence rates, it has been increasing for probably — prevalence has been increasing for the past 20 years. I think now we’re at 1 in 31 as the most recent numbers. And they’re likely — there are many different reasons for that. There is increased access to services. There are better — children are being identified much earlier. They’re being — we have better screening practices. The diagnostic criteria has changed over time. There are likely also some genetic and environmental factors that, you know, I won’t speak to directly because that’s not my field. But certainly there is not one cause. And I do just want to point out that the use of acetaminophen Tylenol has plateaued or decreased over the past 20 years, so it would be hard to explain the decrease in that with the increase in autism, if there was a causal relationship.

Frederica Freyberg:
Now as to the potential cure or treatment for autism, the drug Leucovorin…

Lily Wagner:
Leucovorin.

Frederica Freyberg:
Leucovorin. Is that promising?

Lily Wagner:
You know, I think, I think potentially promising is a nice way to describe it. I think right now there is not enough scientific evidence to support it as a treatment for autism. Again, I would encourage any interested families to talk to their healthcare providers about whether their specific child could potentially benefit from Leucovorin. There is not enough evidence to support it as a treatment right now. Although there are some larger, randomized controlled trials underway across the country.

Frederica Freyberg:
Could it, could it cause unrealistic hope for families?

Lily Wagner:
Yeah, I think, I think when you, when you put a promise of a treatment out there before there’s the science to support it, it’s not helpful. And I think it can just add to the confusion and kind of chaos going on right now. Yes.

Frederica Freyberg:
What should people do, families do with this information coming from the federal government right now?

Lily Wagner:
You know, I think, I think back to what I said, I would really encourage families to reach out to providers that they trust and listen to their recommendations because they’re basing their recommendations on science, on evidence. And I, and I also want to say that it’s very harmful to the autism community. I think the way that some people are talking about autism as a, you know, something that needs to be cured or, or something that’s harmful to families. I think autistic people really add so much to our society, and we should really be working to identify ways to better support them. Yeah.

Frederica Freyberg:
All right. Lily Wagner, thanks very much.

Lily Wagner:
Thank you.