Why more children are being diagnosed with autism and what it means for their families

New CDC data revealed an increase in the prevalence of autism spectrum disorder in the U.S. The report shows in 2020, one out of every 36 children in America was diagnosed with autism. In 2018, that figure was one in 44, and in 2010, it was one in 68. Amna Nawaz discussed the findings with Dena Gassner of the Interagency Autism Coordinating Committee. Gassner was diagnosed with autism at age 40.

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  • Amna Nawaz:

    CDC data released today finds an uptick in the prevalence of Autism Spectrum Disorder in the U.S.

    The most recent data from 2012 many reveals one out of every 36 children in America was diagnosed with autism. In 2018, that figure was one in 44. In 2010, it was one in 68. The findings also show how pandemic disruptions kept many younger children from earlier autism diagnoses.

    For more on this, I'm joined by Dena Gassner, adjunct professor at Towson University. She's also a member of the Interagency Autism Coordinating Committee, which advises the government on funding for autism research. She herself was diagnosed with autism at the age of 40

    Dena Gassner, welcome, and thanks for joining us.

    A lot of folks will look at that increase and be very concerned. You have said that you see those numbers as good news. Why is that?

  • Dena Gassner, Towson University:

    Well, my colleague John Robison and I wrote a commentary that specifies that the crisis we're experiencing is not an increase in autism, because this is really reflective of enhanced diagnosis and, as you have seen, specifically identifying Black and brown children, Asian children, as well as being able to identify a few more people assigned female at birth.

    Unfortunately, the girls are not keeping pace, in terms of being diagnosed in a timely manner, as much as their male cohort.

  • Amna Nawaz:

    So, that rate rose faster, as you mentioned, for children of color than for white kids. The estimates now suggest about 3 percent of Black, Hispanic, Asian or Pacific Islander children have an autism diagnosis, compared to about 2 percent of white children.

    But when you say there's been an increase, does that mean an increase in screening and advocacy? Tell me about that.

  • Dena Gassner:

    Well, historically, a lot of children of color have been assigned inappropriate diagnoses, or their autism expression has been misperceived as behavioral, and they have been really shot into not special ed, but into more rigid behavioral programs, often with really tragic consequences.

    This is a relief. It represents the idea that some of these children who were lost in these systems may actually be finding their way home.

  • Amna Nawaz:

    This also tells us that many more children will need support services of some kind.

    Tell me a little bit about the access to services, because we have all heard stories about parents waiting weeks or months just to get an appointment for an assessment. Is that unusual?

  • Dena Gassner:

    No, it's the rule, rather than the exception.

    And, to be quite frank about it, it's the rule for people of a certain privilege. If you have the privilege of a solid education, you have the privilege of being able to use English as a first language, you have the privilege of financial capacities to hire people to do things, to expedite the process, your child is probably going to be loud enough, because of your advocacy, in terms of their needs, that they get what they need.

    The people that we try to address in our commentary are the people who don't come with those relative privileges, who may be a Black grandmother in Atlanta raising her second child with autism, right? For people like that, for people who are single-parenting and trying to juggle employment and housing, as well as parenting, and navigating these systems, the outcomes are much more challenging and much more difficult to get through.

  • Amna Nawaz:

    What role does insurance play in all of this? How many or how often are these kinds of support services that are needed covered by any kind of insurance?

  • Dena Gassner:

    Well, we do have many things that can be covered, providing you have insurance. But, again, that requires someone in the household to be employed.

    For many people on Medicare or Medicaid, finding providers that will take that income from the assessment process is very, very challenging. Finding people who have expertise in different cultural and ethnic groups, finding people who have that expertise to diagnose for women and girls is really difficult.

    And then we still have an entire generation of people that were never diagnosed, because such diagnoses were not listed in the DSM. There wasn't any category that persons like myself fit into. And so we have to look at this that, although the numbers look better for children, the numbers for adults are still very, very dark and very, very delayed, far beyond a year or two years.

    And it's often wrapped in a lot of diagnostic trauma, because people can't find effective and qualified providers.

  • Amna Nawaz:

    CDC officials today also pointed out the impact of the pandemic, pointing out that, up until March of 2020, there was very good progress in early identification, early detection of autism in younger children.

    And, of course, after March of 2020, they saw a dramatic drop-off. And they're worried now about long-lasting effects. Tell us about that. What are those effects they're worried about? Why is early detection so important?

  • Dena Gassner:

    Well, I believe that early detection can be helpful, because we're getting ahead of the game.

    But I would also say that this population is a very resilient population. And I would be worried about kids who are put through the gauntlet faster to try to catch them up. I think, if we follow their developmental lead, and progress them through growth and personal achievement at their own pace, that will get better outcomes.

    We have really got to shift our focus away from finding some underlying cure to focusing on why these systems are not getting us better outcomes.

  • Amna Nawaz:

    Dena, the fuller picture being painted here is, there's more children, in particular, who will need more help, and there's not enough help there to offer them right now.

    For families who receive a diagnosis, knowing what you know about the emotional and the financial toll this can take, what's your best guidance to them right now?

  • Dena Gassner:

    Persist. Be the noisy person that just doesn't stop until you get what you need.

    And I realize, when I say that, that's a privileged position to be able to take. I would also say that we really need to examine administrative burden that make accessing these services so difficult. And, again, I'm going to discuss adults or parents who may have co-occurring disabilities of their own.

    We come to the systems, like Social Security or to a social service agency, often in our darkest moments. We don't go when everything's successful. We go because we have bankrupted everything we had. The systems really are not able to be utilized efficiently, effectively and in a timely manner.

  • Amna Nawaz:

    That is Dena Gassner, adjunct professor at Towson University, and also a member of the Interagency Autism Coordinating Committee.

    Dana, thank you for your time.

  • Dena Gassner:

    Thanks for having me.

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