New CDC report on autism shows children of color being diagnosed at a higher rate than white children

A new CDC report on autism is showing an all-time high in diagnoses among children, with one in 36 receiving a diagnosis compared to a rate of just one in 44 five years ago. The report also found, for the first time ever, that children of color are being diagnosed at a higher rate than white children.

To help make sense of what the new data mean, autism researcher Dr. Sarabeth Broder-Fingert spoke with GBH's All Things Considered host Arun Rath. Broder-Fingert is a professor of pediatrics and associate director of research at the Eunice Kennedy Shriver Center at UMass Chan Medical School. This transcript has been lightly edited.

Arun Rath: Before we dive into the details of this new data, help us understand a bit more about what an autism diagnosis means for a child and their family.

Sarabeth Broder-Fingert: Well, an autism diagnosis can actually mean a range of things because it's such a spectrum. In general, children will undergo relatively extensive testing to determine if they meet criteria for autism. Once obtaining a diagnosis, that's the gateway into getting a variety of treatment services that children need. Those can range from daily support for social communication, many children will also need additional support, things like occupational therapy and physical therapy. There are very high rates of other comorbid conditions, particularly mental health disorders, so it may also mean additional support for mental health concerns — along with the supports for core symptoms of autism.

Rath: When you're looking at new data like this, how do you tell whether autism rates are rising versus, maybe, the testing is revealing more than it did in the past?

Broder-Fingert: Yeah, this is a common point of conversation. I think that the rates are likely both rising, and we're doing a better job at detecting autism. I think it's probably both things together, although it is a little hard to pull apart because it's certainly possible that a lot of this relates to our ability to understand and detect autism more accurately and more fully than in years past, which allows us to find kids who are out there who had been missed previously. I think, and many people believe, that probably the larger contributor here is that we're doing a better job of actually finding these kids and being able to get them a diagnosis. With that said, it's undeniable that the rapid increase in prevalence is likely multifactorial.

Rath: With what looks like a dramatic increase over just five years, do we have a sense of why autism rates are rising in that way?

Broder-Fingert: Well, I think first, for sure, one reason is just that we're getting better at finding it. I think that the new data on race and ethnicity is a great example of that. Many of us in the field have been working for years, really focused on these dramatic disparities that exist in diagnosis.

In the original CDC data that that came out almost 20 years ago now, there were profound differences by race and ethnicity in the prevalence numbers. We've been working hard to close that gap. Most people believe that that gap is only related, really, to society's ability to help diagnose and support those families and those kids have just been getting missed. In some ways, the new data is showing that both the prevalence and those numbers by race ethnicity have have dramatically changed are really a reflection of a lot of, I think, successes that we've had in the community trying to improve diagnostic services and address health disparities.

With that said, I do think that although there's things to celebrate about the fact that we're doing a better job diagnosing children of color particularly, I think this is the the first step in a long list of things that need to be accomplished. I think we have achieved some better equity in diagnosis but these data don't reflect how many of these kids are actually getting into treatment.

I do worry greatly that although we've decreased the disparities in actual diagnostic numbers, we haven't decreased the disparities in which of these kids are actually getting evidence-based treatment and all the support that they need. So, I think we still have a long way to go, but I do think that that these numbers should give us some hope that we are doing a better job at finding kids and getting them a diagnosis.

Rath: That's fascinating. So, it used to be that the gap was that more white children were diagnosed with autism? And it's been a correction?

Broder-Fingert: That's exactly right. There used to be really large differences by race and ethnicity. The challenge has been that, as a society, we were just not diagnosing Black children or children of color at the rate that we were diagnosing white children — for reasons such as bias within the health care system, structural racism and the tools that we use not being sensitive to different racial and ethnic backgrounds. I think there's been a huge effort across the country to try to close some of those gaps and I think that's that's what's happened here.

Rath: That's fascinating, because it also seems like it would enforce a stereotype of autism somehow being a disease of affluence.

Broder-Fingert: Exactly, and I do think that was a stereotype for a long time and has been a huge problem. There have been a number of us who have been working really hard to change that perception. I do think that we're having some impact, although we have a long way to go. For many years, it was believed that autism was a condition that was only in affluent or white populations.

Rath: So, if there's been this lag with children of color not getting diagnosed and there's been this catching up on that, it would seem like there would also have to be a lag in treatment, right? And getting these children of color treatment at the same rate?

Broder-Fingert: I think anyone who works in the community and anyone who looks at the data would know that, although we're now catching up on diagnostics, we still have a ways to go on treatment. Children of color still have a harder time getting all the different evidence-based treatments. As I mentioned before, autistic children will often need multiple treatments from different providers, from different service settings — whether it's the school and the health system or community resources.

We know that, although we've made this gain in diagnosing children of color, we have not yet caught up in getting them into treatment. I think for those who are focused on equity and disparities, that is going to be a next really important step to focus on: really getting these kids into treatment and and supporting their families so that, once they're diagnosed, they have all the services they need. We're certainly not close there. But with that said, 15 years ago, I would have been very surprised that we have now made such an impact on diagnostic disparities. So I would say there's hope that, with the focus on treatment, that we can achieve a similar outcome that has been achieved here.

Rath: Dr. Broder-Fingert, it is really eye-opening and helpful to be able to break down this data from the headlines in this way. You've done a brilliant job of it. Thank you so much.

Broder-Fingert: Oh, my pleasure.