Some Arizona kids with autism diagnoses get services in school but not out of it. Here's why

Around 3% of children aged 8 in the U.S. are diagnosed with autism, according to the Centers for Disease Control and Prevention. The numbers are similar in Arizona. But Joshua Anbar, a clinical assistant professor at Arizona State University, has questions about those diagnoses and where they’re coming from.

At ASU, Anbar tracks the prevalence of autism in Arizona. He says that happens in even-numbered years among 4- and 8-year-olds.

In his new research, Anbar found, over the past several surveillance cycles, about half of the kids who’d been diagnosed with autism had only been given that diagnosis through the education system and not in a clinical setting. That means those 8-year-olds were eligible to get services in school, but not outside of it.

Anbar joined The Show to talk more about this and what it means.

Full conversation

MARK BRODIE: Joshua, is this discrepancy due to the fact that those kids just weren’t being evaluated by a clinician?

JOSHUA ANBAR: That is an excellent question, and the short answer is we don’t know. The longer answer is that it’s complicated. There needs to be more work and more research done to really understand what’s happening with those kids who do not have a clinical diagnosis.

We do know that there is a subset of kids who had both special education records and clinical records that had something to do with development, but there wasn’t really agreement there. So there wasn’t agreement between the clinicians and the special education personnel in the school systems. And so we really need to understand what’s happening there in order to more fully answer that question.

MARK BRODIE: Are there different evaluations given in a clinical setting versus an educational setting?

JOSHUA ANBAR: Yes. So in an education setting, a special education evaluation is really focused on those factors that can influence your ability to succeed in an educational environment, to do well in school. A clinical evaluation is really focused on specific social behaviors, on specific developmental behaviors and developmental milestones, and various gross motor function, that sort of thing. So they are looking at different things, and they use different tools to evaluate those things.

MARK BRODIE: Does this kind of point to the general difficulty of diagnosing autism spectrum disorder? I mean, it’s not like you can take a blood test and say, yes, you have it, or no, you don’t.

JOSHUA ANBAR: Yeah. So this is a reflection of that. In order to diagnose autism, no matter what context it’s occurring in, we have to do various testing, various observation. So we’re triangulating what we think the challenge is.

MARK BRODIE: It’s interesting, though, because I would imagine that there must be some overlap, right? Like if a student is struggling in school and they get a diagnosis, that obviously affects like their social interactions at home or with friends outside of school. And I would imagine vice versa, right?

JOSHUA ANBAR: That’s what you would think, and that makes some intuitive sense. However, in the data, we’re not seeing that in the way we would expect to see it. The big question is why is that occurring. And it could very well be that a lot of kids get a special education exceptionality for autism, they’re getting services through the schools, parents are satisfied with that, and so there’s no need to get a clinical evaluation from a parent and family perspective.

It could be that there are financial barriers or access barriers. There are not a lot of clinicians out there who can diagnose autism. Waitlists can be very, very long. On average in this country, for an autism evaluation, you’re on a waitlist for 13 months.

MARK BRODIE: Wow.

JOSHUA ANBAR: It’s a long time. So these are barriers to getting an autism evaluation. So it could be that these barriers are preventing that from occurring.

But on the flip side, as you alluded to, we’re also seeing that kids who have a clinical diagnosis of autism, roughly a quarter of them don’t get special education services. So there is some systematic disagreement between our education system and our health system.

MARK BRODIE: Is there some disagreement, do you think, between the clinical world and the educational world about whether a child actually is autistic or not, or is it just a matter of one maybe hasn’t been tested or evaluated or specifically diagnosed?

JOSHUA ANBAR: I think it’s a combination of both. I think that the critical piece is is that the priorities of our education system and the priorities of our health system are different. Our education system, its priorities are: How do we educate this child? How do we ensure their success in an education setting? How do we prepare them for success after high school? — that sort of thing.

Our health system has a different focus. It’s focused on not just health and well-being, but it’s focused on development. It’s focused on behaviors that can disrupt everyday living. So they have different lenses that they’re looking at this thing we call autism through.

MARK BRODIE: What are the implications of this disparity?

JOSHUA ANBAR: So there are a couple of different implications. One of the big implications is what happens to those kids who only have a special education exceptionality for autism. The way our special education system works is that it provides services for kids straight from kindergarten to when they separate from secondary education, either when they graduate from high school or they age out of high school if they’re not able to graduate. Once they leave high school, however, once they’re done with their primary and secondary education, those services go away.

So this has huge implications if roughly half of kids aren’t getting a clinical diagnosis. What happens to them after they become adults? So that’s one major implication. Another major implication is what is happening to those kids who have a clinical diagnosis, but are not getting special education services. Are they able to succeed academically without special education services, and that’s why they’re not getting them? Or are they being left behind because the way our special education system is set up, it’s not set up to support this particular subset of children? And we don’t know what their particular needs are, and that’s where, again, more research is needed.

MARK BRODIE: It seems from an outsider’s perspective that this shouldn’t be such a difficult problem to solve, right? Like if a student has a diagnosis from an educational standpoint, like why shouldn’t that also qualify them for some kind of services outside of school and vice versa? Why is this so hard?

JOSHUA ANBAR: That is a great question. And the reality is that the reason it’s hard is that these are two separate systems governed by two separate sets of priorities. And because they have these competing sets of priorities, their evaluations don’t necessarily line up.

MARK BRODIE: Is there work being done on this? Like is anybody trying to figure out a way to come up with some kind of evaluation that maybe both camps could use that would satisfy both of their needs, that might ultimately help these kids?

JOSHUA ANBAR: There are conversations that are happening. There has been a push to develop working groups between clinicians and special educators, people who provide clinical services as well as teachers, both in special education and in general education, who are supporting children with autism.

And the definition of autism from a clinical perspective has changed over time. We have introduced new terms. The term "autism spectrum disorder" did not exist as a clinical term until 2013.

MARK BRODIE: Mm-hmm.

JOSHUA ANBAR: And we’ve also changed the clinical criteria for diagnosing autism. So there are opportunities to make change, to have conversations about what is this thing autism that we’re talking about and how can we create a unified definition that both educators and clinicians can use.

MARK BRODIE: We talked about some of the implications of this disparity. I also wonder if there’s an educational implication here for students who maybe have a clinical diagnosis, but not an educational one, or vice versa. Because even if you have the services in school, that doesn’t necessarily help you at home when you’re like struggling to maybe do your homework or work in a group project if you’re having sort of social dynamic challenges, things like that. Like there must be educational implications to all of this, also, right?

JOSHUA ANBAR: There are. There are significant educational implications. So if you have a kid who has a clinical diagnosis of autism, but is not receiving special education support, that means that for eight hours of their day, a third of their day, they’re in an environment that may not be able to best support them and allow them to succeed in the fashion that they should be able to best succeed in.

Now, a school district official might come back and say, "Well, they’re able to succeed academically, and so if they’re having some social problems, that’s OK. But they’re succeeding academically, and that’s our priority." And they would be right. But it also doesn’t look at the kid as a holistic individual who has needs beyond just succeeding academically or having a stable home life.

And so this is the big question of what is it that we’re talking about when we say that one in 31 or one in 32 kids here in Arizona have autism when half of them only have a special education exceptionality. They’re getting support in school, but they’re only in school eight hours a day. Two-thirds of their lives are at home where they may not be getting support. That’s a lot of time that parents are trying to figure out how to navigate the needs of their child. And then, of course, as I mentioned earlier, those kids with a clinical diagnosis who aren’t getting supports at schools.

MARK BRODIE: All right. Joshua, thank you so much. I really appreciate it.

JOSHUA ANBAR: Thank you.