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Home U Rising Here’s what we know about how demographics of autism spectrum disorder in Utah are changing—and why


One in 40 Utah children who are 8-years-old have been identified with autism spectrum disorder. For the first time, a new analysis led by U researchers found that among Utah children in this age group, the rates were equal in white children and children from historically underserved populations.

Host Julie Kiefer's guests are Dr. Amanda Bakian, an associate professor of psychiatry at Huntsman Mental Health Institute (HMHI), and Dr. Deborah Bilder, a professor of child and adolescent psychiatry at HMHI.  They discuss the shifting demographics of autism and share insights on prevalence, treatment and resources.

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Julie Kiefer: Welcome to U Rising, where we share stories about interesting and often groundbreaking research and innovations taking place at the University of Utah.

I'm Julie Kiefer, the associate director of science communications at University of Utah Health and host of this episode.

My guests today are Doctors Amanda Bakian and Deborah Bilder. Deborah is a professor of child and adolescent psychiatry at Huntsman Mental Health Institute at University of Utah Health. And Amanda is an associate professor of psychiatry, also at the institute.

Welcome to U Rising, Amanda and Deborah!

Amanda Bakian: Good morning, Julie. Thanks for having me.

Deborah Bilder: It's so nice to be here. Thank you for inviting us.

Julie Kiefer: Let's start with a brief description of autism spectrum disorder, which is the subject of your research. One thing that's interesting to me is the way I've thought about this disorder has changed a lot over the last 10 or 20 years. Deborah, how would you describe autism spectrum disorder today?

Deborah Bilder: Autism spectrum disorder is a developmental condition that affects a child's ability to socialize with other individuals to express their needs and wants with their language. They have repetitive behaviors that may not make sense to anyone else. They may have an intense insistence on sameness. They have different responses to sensory input and they may have an intense interest in a particular area that might be unusual for their neurotypical peers.

         Deborah Bilder

Julie Kiefer: And both of you contributed to studies led by the Centers for Disease Control and Prevention, the CDC, that looked at the prevalence of autism in children in 11 communities nationwide, and specifically you two led efforts researching children in Utah, which included Salt Lake, Davis and Tooele counties. So, I wanted to ask you about this research, which is really interesting. First of all, some of your research focused on eight-year-olds. Now, why focus on this age group in particular?

Amanda Bakian: So, when the Centers for Disease Control and Prevention established the Autism and Developmental Disabilities Monitoring Network for study year 2000, the thought at the time was that the prevalence of autism would peak at age eight. So, the identification of autism is based on behavioral characteristics in children. There is no biomarker for autism. And the thought at the time was that these behaviors associated with autism would be recorded in either health and/or education records of children. And although autism, these behaviors, need to present themselves at an early age, before age three in order for a child to meet a diagnosis for autism, the idea was that the behaviors may not be captured in a health or education record until a later age and should be captured by age eight. Therefore, that was initially the focus, was on children age eight. I think since then we have learned so much, which I know we'll probably talk more about this morning, but at that time, the idea was that autism prevalence was likely to peak by age eight, and therefore that was the focus of the Autism and Developmental Disabilities Monitoring Network [ADDM] initially when it was first established.

Julie Kiefer: So, monitoring that age group would be the most accurate way to assess the prevalence of autism among kids?

     Amanda Bakian

Amanda Bakian: Exactly, Julie, because again, what prevalence actually measures is the total number of individuals who meet a certain outcome of interest out of the entire population. So, a measure of prevalence would identify children, you know, if we're looking at prevalence at age eight, it would identify a child who was identified with autism at age three, age four through age eight out of the entire population of children who are age eight at a particular point in time.

Julie Kiefer: And so what your research is showing is that this prevalence in among children in Utah has actually changed over the past decade. Tell us about that.

Deborah Bilder: Well, these changes that we've seen have been quite notable over the last decade. Well, take us back to study year 2012. Among those eight-year olds, one in 58 were identified with autism. And then when we participated again in the CDC ADDM Network, that was for study year 2018, and at that time, we identified autism in one in 46 eight-year-old children. Just recently, for study year 2020, we identified the presence of autism in one in 40 Utah children who are eight years of age.

Julie Kiefer: So, what explains the increase?

Deborah Bilder: Well, I think that there's multiple different factors that help us understand these increases. I think, in my mind, there is no doubt that the increase in our community's awareness of autism plays a big part in recognizing the signs and symptoms. In addition, I think there's been a marked increase in acceptance of autism and a comfort in considering this as a possible diagnosis.

And, I think those are two big pieces. Another substantial piece has to do with access to diagnostic services and to treatment services. In the past, over a decade ago, it was really something that families with more financial means would be able to afford and access.

Because of our state Legislature, they passed bills, the Utah State legislature in 2012 and 2014, that dramatically changed that, that made it far more equitable for children across the socioeconomic spectrum to be able to access diagnosis and treatment of autism spectrum disorder. And I feel that fundamentally, not just as a researcher, but also as a clinician, that I have seen such a difference in those individuals who've had that access and, you know, to see the response that these individuals have had and being able to get early identification, early treatment and their ability, subsequent ability, to be more independent and more integrated into their communities.

Julie Kiefer: And so your research is finding for the first time that there are actually equal rates of autism among white children and children from historically underserved populations. I mean, tell us about that. What does that mean?

Amanda Bakian: So, when the Autism and Developmental Disabilities Monitoring Network was first established, now it's been over 20 years, the initial finding was that the prevalence of autism was significantly higher among children who are white, non-Hispanic.

And that finding actually persisted in the ADDM network for quite a number of years. And more recently, we've actually seen a change in this pattern across the ADDM Network. Over the last few study years, we've seen no difference in the prevalence of autism among different race/ ethnicity groups. And then in this last study year, 2020, we actually saw a change in the pattern where the prevalence of autism spectrum disorder was actually lower in white non-Hispanic children than in children from Hispanic, Asian or Black backgrounds.

We’ve been talking about our study looking at the prevalence of autism in eight-year-olds. We also have another piece of our study where we look at the prevalence of autism among four-year-old children in the same three county surveillance area. And in that study, we actually have found for the first time a higher prevalence of autism spectrum disorder among Hispanic four-year-old children compared to white, non-Hispanic four-year-old children. For our eight-year-old children, we see no difference in the prevalence of autism by race/ethnicity.

Julie Kiefer:  Yeah, which is so interesting because I mean, I always pictured, you know, when I picture a child with autism, I think of a white boy, right? That's just what I've been taught to think. And this is really saying that is not necessarily the typical, you know, how this plays out. And, I think what that also says is that this is not a biological difference. It's really a difference in access to care. Can you talk more about that?

Amanda Bakian: Yes, I think you're right, Julie. So, I think you get at an important purpose for these surveys to begin with, which is initially when this work was conducted, and we did find this finding of a higher prevalence of autism among especially boys who are white and non-Hispanic, we weren't sure of the explanation for that. Then there were multiple hypotheses trying to explain that. One of them being, are there biological or genetic differences in children from different race/ethnicity groups? And is that an explanation for these differences in ASD prevalence.

A different hypothesis was, is there an under-diagnosis, under identification of autism among children from other racial/ethnic groups or racial/ethnic backgrounds. Now that we've been able to do this study over multiple years, we've seen these changes and we've seen a reduction in the differences in autism prevalence by race/ethnicity. Well, that helps us to, there's more evidence to suggest that actually we are realizing it was actually reduced identification, reduced access to diagnostic services, that was really the driver for these differences in autism prevalence based on a child's race and ethnicity.

Julie Kiefer: Amanda, what's the latest thinking about the causes of autism spectrum disorder?

Amanda Bakian: I like to start by saying that autism is a very heterogeneous condition. And there's a saying among the autism community that if you've seen one child with autism, you've seen one child with autism. And what that points to, the heterogeneity in autism, that there's likely a lot of trajectories towards what presents as autism. There's not a single underlying cause.

We know that autism clusters in families, it is a considered a highly heritable condition and genetics play a considerable role. However, the genetics of autism are quite complicated. It is a complicated genetic architecture. About 10% of autistic individuals have a known genetic cause, but that is 10%. So, the remaining 90%, there's not one clear known genetic cause. So, while the genetic piece is very important, there's also evidence of an environmental piece. So, the role for genetic by environmental interactions.

The causality of autism remains a very busy area of research currently. And I would like to distinguish a little bit. We were talking about biological or genetic drivers of autism prevalence and the hypothesis that might play a role in differences in autism prevalence by race/ethnicity. I want to distinguish that from the causes of autism, meaning while we know that there's a biological piece and a genetic piece that plays a role in the causes of autism, what we're not finding is that these biological or genetic risks vary by child's race or ethnicity background.

Julie Kiefer: So, another group that you looked at was children from lower-income households. Why did you look at that group in particular and how has the prevalence shifted with that group over time?

Amanda Bakian: The Autism and Developmental Disabilities Monitoring Network study is a population-wide study. So, we measure the prevalence, we track children with autism on a population-wide basis. So, any child who's eight years of age, who resides in Salt Lake, Tooele or Davis County in our study years is looked at for autism spectrum disorder. Therefore, it considers children from every socioeconomic background and that's one of the strengths of the study and why the way it is designed this way is because we could address multiple characteristics of a child simultaneously, considering race, ethnicity, there's socioeconomic background and so forth. And also, at the same time that we were wondering about why there's a difference in autism prevalence based on race/ethnicity, we had a similar finding where we saw differences in the prevalence of autism spectrum disorder based on a child's socioeconomic status.

Again, there were questions about what was driving these differences. We find higher prevalence of autism spectrum disorder, as you mentioned, originally among children from higher socioeconomic status backgrounds. Again, there was a hypothesis that there may be biological or genetic reasons for this. As we were able to track this pattern over time and see that that pattern just didn't hold, and actually now in 2018 and 2020, our data indicates that we actually have a higher autism prevalence among children from economically disadvantaged backgrounds. That actually, again, provides very important information that makes us, that helps us understand the factors that are responsible for these differences in prevalence based on socioeconomic status.

Julie Kiefer: We’ve been talking about autism spectrum disorder in Utah, but I'm wondering how Utah compares to the rest of the country.

Deborah Bilder: Well, looking at the eight-year-olds, and it's, as Dr. Bakain had described earlier, it is looking at the prevalence of autism among eight-year-olds, which is intended to be the index of understanding how different states compare. And, we are right about in the middle across the network of 11 different states.

That is not how it was years ago. So, more than a decade ago, we were among the highest rates of measured autism prevalence. And we feel that reflected the degree to which we had access to the information we needed to identify the prevalence of autism here in Utah. We were able to work together among our different institutions and be able to access a nice breadth of medical and educational records to make this determination. Not all states had that ability and that subsequently affects their measured prevalence. Over the last several study years, the CDC has really raised the expectations that states who receive this funding do have access across education and health records. And as a result of that, I think other states have been able to be more thorough in their capacity to measure the prevalence of autism, like we were able to do a decade ago.

Julie Kiefer: So, all of this really points to the importance of early detection and treatment of autism. What are we doing in Utah to continue to improve that?

Deborah Bilder: Well, in addition to the legislation that has passed, that has reduced substantial financial barriers across the economic spectrum for these children in regards to diagnosis and services, there has been a real increase in training programs available among our educational institutions and training individuals on different aspects of treatment to help support the treatment and services provided to these kids. From a screening perspective, the University of Utah Department of Pediatrics has really led across state, particularly with Dr. Carbone initiating a lot of initiatives that have improved screening practices among pediatric settings, that have embedded the screening tools within the electronic medical records that will subsequently prompt families before they come in for their well-child checks at one and a half years of age or two years of age, to fill out standardized questionnaires that will screen for autism regardless of whether there had been concerns or not.

And in those electronic medical records, they have been able to even implement prompts for the provider to understand what resources are available for subsequent developmental assessments for those children who have a concerning result on that screening. So, I feel like there's been a lot that our state has done.

Another big aspect of this, through the University of Utah Developmental Assessment clinics, it’s run through the Department of Pediatrics, has been a liaison between them and Medicaid, and thinking about how can they fast track assessments for those children who are most severely affected by autism, those children who are in greatest need of getting treatment started as early as possible, and they've done their pilot studies to look at various different ways of streamlining that process so that those children get access even more rapidly to a diagnosis so they can subsequently receive treatment at a time where their brain is really most capable of responding to that intervention.

Julie Kiefer: Deborah, tell us a little bit more about treatment for autism spectrum disorder. What does that look like? What are some of the different options?

Debora Bilder: I'd like to just start with what the purpose of treatment is for autism spectrum disorder, which is not to change who a person is fundamentally, it really is about skill building and allowing these young children to learn skills to improve their ability to communicate their thoughts and their feelings in a way that other people can understand them. And to learn in a classroom that is as integrated as possible with all their neurotypical peers with the least degree of restrictions in place and ultimately to just maximize their ability to be as independent as possible as adults.

So with those goals in mind, the traditional treatments that are used are related to developing skills, improved adaptive skills, though one treatment—the applied behavioral analysis—definitely has the longest tradition and research history, but even that has evolved substantially over time to reflect better the human experience and the interaction with others and take advantage of the environment in which the child is as they learn from their environment, as well as from very direct engagement from the treatment provider.

And there are other types of treatment as well that, once again, really enhance that child's ability to communicate, like speech and language therapies, and enhance their ability to play and engage with others. From a medication perspective, there is no medication that has FDA approval to treat autism.

There are a couple medications that have approval to treat, in this short period of time, agitation associated with autism, but they don't treat the core features of autism. And when an individual presents with agitation, it's just so important that the families and the providers really consider what's causing that agitation and how can we help that person address that source of agitation, whether it's in their environment so they can be more comfortable in their environment, whether it may involve a mental health condition, which is far more common in this population, making sure that underlying cause of agitation is thoroughly considered in addition to addressing immediate safety concerns if that's what the agitation is leading to.

Julie Kiefer: And so if somebody in Utah wanted to find out more about how to get an assessment for their child, where would they go?

Deborah Bilder: They should go to their primary care provider if they have a developmental concern. And I'm glad you brought up this question, Julie, because we may have these very specific periods of time when we bring our children in for their well child checks, at these various designated, you know, period time points, and yet, surveillance really should be ongoing.

It should be ongoing between those medical visits. So, the “Learn the Signs. Act Early” program has a CDC milestone tracker that you can find on the website that I can provide you afterwards so that people can access that, that allows parents to do this kind of ongoing screening so that they don't even need to wait until that next appointment to see their primary care provider. They can reach out to that provider, get a visit with that individual, have their child examined, assessed, and be able to be referred for subsequent  developmental evaluation.

Julie Kiefer: And Amanda, do you have anything to add?

Amanda Bakian: There are also resources in addition to the “Learn the Signs. Act Early,” which is really very critical and a partnership that the state has with the CDC. In addition to our collaboration with the CDCs ADDM Network. We also have the children with special healthcare needs in the Utah Department of Health & Human Services, which has information online there in terms of how to access assessment, potentially if there's concerns and where the availability of those diagnostic assessments are. So, that's another resource just to go and look at for parents so that they have—there's a lot of information out there, but those are two good locations where parents can start to see what information is out there that they can also then go in and discuss with their primary care provider.

Julie Kiefer: Amanda and Deborah, thank you so much for being my guests on U Rising today. You shared a lot of great information with our listeners.

Amanda Bakian: Well, thank you, Julie, for having us today.

Deborah Bilder: We really appreciate this invitation to help you and our community understand autism better as well as these changes that we've identified through our participation as a state in this national network.

Julie Kiefer: Listeners, that's it for today's episode of U Rising.

Our executive producer is Brooke Adams and our technical producer is Robert Nelson. I hope you'll tune in next time when my co-host Chris Nelson will be talking about the U’s Veteran Support Center and its recent national recognition. I'm Julie Kiefer. Thank you for listening.