The incidence of autism spectrum disorder jumped about 120 percent in the first decade of this century. A 2016 national survey puts the number at 1 in 45 children from the ages of 3 to 17. Overall it’s estimated about three-and-a-half million Americans live with autism.
Listen to an interview with Jeremiah Dickerson, MD, a child psychiatrist at the UVM Medical Center, who helps us understand more about possible causes, changes in diagnosis, effective interventions, support services and much more. A transcript of the interview is available below.
UVM Medical Center: One of the most alarming statistics in health care is the rise in rates of autism spectrum disorder, which jumped about 120% in the first decade of this century. A 2016 national survey puts the number at 1 in 45 children from the ages of 3 to 17. Overall it’s estimated about three-and-a-half million Americans live with the condition, which can negatively impact learning, social interaction, and motor skills, among other things. It also presents many challenges for families and caregivers.
Our guest on Health Source today is going to help us understand more about possible causes, changes in diagnosis, effective interventions, support services and much more. He is Dr. Jeremiah Dickerson, a child psychiatrist at the UVM Medical Center, and assistant professor at the Larner College of Medicine at UVM. Thanks for coming.
Jeremiah Dickerson: Thank you.
UVM Medical Center: Start with a basic definition.
Jeremiah Dickerson: Autism has been called different things over the years which, I think, adds to some of the questions that surround a diagnosis of autism here in 2017. Currently, per our diagnostic manual, we reference autism as “autism spectrum disorders”. Previously, you may have heard the terms autistic disorder or pervasive developmental disorder, or Asperger’s Disorder. All of that has now kind of congealed under the umbrella of an autism spectrum disorder, which is essentially a neuro-developmental disorder, characterizing individuals who demonstrate an array of social communication problems, accompanied by restrictive and repetitive interests and behaviors.
UVM Medical Center: Give me an example of something that people would encounter.
Jeremiah Dickerson: I think it’s a tricky question to answer because autism is so heterogeneous in terms of its presentation. We operate under the auspice of ‘if you’ve seen one kid with autism, you’ve only seen one kid with autism’, because it can present so differently. But typically, you may see people struggling to make eye contact when they communicate with another person. Some individuals with autism don’t have much expressive language. Other individuals with autism may display a range of repetitive behaviors like hand flapping, or spinning, or pacing. That can also present with their language as well, where they have repetitive language – something we call echolalia – where they are repeating the same thing over and over again.
UVM Medical Center: Now, I think when people see stories about autism on television, they see the kid rocking back and forth, and yelling, and all of that. Is that typical or is that more on the heavy end of the spectrum?
Jeremiah Dickerson: That can be typical. I think there’s different intensities of those types of symptoms. They may present differently in different kids at different times, or they may present differently in the same kid at different times as well. I think a lot of what we see on television and in films are dramatized portrayals of those with autism, but I think portrayals are getting much more nuanced. In particular, I think it was this week where there was a Sesame Street character, Julia, who made her debut. She’s the first Muppet who has a diagnosis of autism. It was great to see her on TV, reflected in a very positive way that will, hopefully, kind of help to dispel myths and, I think, help children and families appreciate some of the differences that they may encounter in real life with their friends or other folks.
UVM Medical Center: Is it progressive? Or if a kid starts with a certain set of behaviors and conditions, that’s it? Or can it get worse or better?
Jeremiah Dickerson: The short answer is, it depends. There is a cohort of kids who develop relatively typically until a certain age, and then they lose some skills. That tends not to capture the vast majority of those with autism. Typically, we can start to see symptoms or deficits in social skills around 18 to 24 months of age. The thought is that once you get those children into effective treatment and evidence-based treatment, that you can help to build some of the skills that may be deficient early on, but there’s many different trajectories that people can go in with autism. Some people can get better in terms of a certain constellation of symptoms. Then, throughout one’s development, there could be periods of worsening as well. There’s a lot of variability in the trajectory.
UVM Medical Center: Talk a little bit about what can be done, and maybe how things from a historical perspective have changed. What kind of interventions are available now that might not have been 10, 15 years ago?
Jeremiah Dickerson: I think interventions have really shifted dramatically, particularly over the course of the last 10 to 15 years, where we now know that there’s a significant amount of evidence behind treatments that fall under the framework of “applied behavioral analysis”. That tends to be engaging younger kids, and elementary- school-age kids, in behavioral treatments that aim to foster some skill growth. We do know that autism, for the most part — I say that as I question that — cannot be cured. We don’t have a cure for the core symptoms that characterize autism, but what we can do is help minimize those symptoms, – help minimize the core impairments – foster strengths, and help the family manage in a context of raising a child with autism.
UVM Medical Center: Then it becomes quickly a challenge for the schools as well. Talk about that and how they’re trying to cope with it.
Jeremiah Dickerson: Here in Vermont, a lot of kids who have a diagnosis of autism will qualify for special education. Once kids reach school age, even three years old, where they can enter into the special ed. preschool system, that’s where the majority of the treatment lies for a lot of these kids. Most of the time, these kids are included in the general classroom which, I think, the pros of that far outweigh the cons of that. In particular, that it provides kids with opportunities to engage with typically developing peers, which in and of itself, can hopefully foster some social skills, but also diminish the stigma that can surround kids with developmental disabilities. I think the schools in Vermont work really hard to engage these kids and also provide specialized services like speech language therapy, occupational therapy, physical therapy as well.
UVM Medical Center: It really is a range of things. As I mentioned in the introduction, a real challenge for families. You see that every day.
Jeremiah Dickerson: Yes, there’s some statistics that indicate raising a child who has co-occurring behavioral problems, that’s a stressful thing, and parents develop an array of symptoms that is akin to post-traumatic-stress disorder that we see in people who’ve fought in combat overseas. It can be a really difficult job. Part of the support system and the system of care is to really help parents and help support families to do the best that they can do, given their resources and circumstances. It’s our job to focus on the child, but also focus on the mental health of the parents and the siblings. Oftentimes, typically developing siblings kind of get left to the wayside. We’re constantly thinking about ways in which to, hopefully, engage the family in a wellness paradigm that really keeps everybody well, so that everybody’s healthy enough to parent a challenging child.
UVM Medical Center: If you’re just tuning in, we’re listening to Dr. Jeremiah Dickerson. He’s a child psychiatrist at the UVM Medical Center, and an assistant professor at the Larner College of Medicine at UVM. Our topic today is autism. We’re trying to learn more about this condition and the impact it has on the people with it, and the families, and schools, and so forth. I didn’t ask you about causes. There’s not one single cause. There are possibilities. Talk about some of that.
Jeremiah Dickerson: Yes, there are lots of possibilities. We don’t know what causes most cases of autism. I think what we do know is that there’s a genetic component to most cases, but that likely doesn’t capture 100% of the etiology or cause of autism. There’s likely an environmental component as well. It can be really tricky to parse that out. What we do know, and what the research shows, is that vaccines do not cause autism.
The research behind autism is impressive. Every day there seems to be new articles that are popping up, exploring possible causes or possible contributions to the risk of developing autism. We know that there’s a risk of older parents having a child with autism. In part because being an older parent, particularly an older father, imparts some risk of having genetic mutations and passing that on to the child. There’s some papers that demonstrate certain exposures during pregnancy may increase one’s risk of having a child with autism as well.
UVM Medical Center: I talked about the increase, which gets a lot of attention. It seems that diagnostic changes and maybe greater awareness could be two of the big factors in that.
Jeremiah Dickerson: Yes, I think those are two of the big factors. I think overall we don’t really know what’s driving the prevalence, the increasing prevalence of autism. Like you said, the prevalence has really increased quite remarkably over the past several years where it’s now, I think, one in 65 children are being diagnosed with autism, per numbers from the Center for Disease Control and Prevention. We think it’s because the way that we think about autism diagnostically has shifted. Our threshold, in terms of providing a diagnosis, may be lowering over time. We know that kids who previously were being diagnosed as intellectually disabled, now that we have better diagnostic tools, seem to fit the bill for autism. So there’s been some, what we call diagnostic accretion, from that intellectual disability category, to the autism category.
UVM Medical Center: Is it tricky to diagnose? It sounds like there’s some subjectivity to this.
Jeremiah Dickerson: Diagnosing an autism spectrum disorder is a clinical diagnosis. Meaning, there’s not one specific tool that in and of itself is going to provide us with enough data to justify a diagnosis. Our job as clinicians is, hopefully, working amongst a team of people to use a set of standardized tools, gather some data, and put our thoughts together in a way that we try to best capture an individual with a particular diagnoses. A couple of the tools that you may hear about are the autism diagnostic interview, and then the autism diagnostic observation schedule, which are two gold-standard diagnostic tools that tend to be used.
UVM Medical Center: Let’s touch on research for a second. What’s happening out there that’s caught your eye, or you think has some promise?
Jeremiah Dickerson: I think, again, the research is so rich nowadays that there’s lots to think about, lots going on. I think one of the things that people are really intrigued about is the possibility of, “How can we identify kids early?” We know that the earlier we diagnose, the earlier that we get a sense of the kid’s struggles and strengths, the earlier we can provide individualized treatment. Which, hopefully, will lead to better outcomes. There’s been some really nice papers using eye tracking technology, and putting little kids – like 12-month-olds – in eye trackers, and following their gaze. Getting a sense of if they’re looking at people in the eye, or looking at people in the mouth, or looking at objects around the room. That may be an indicator that there may be a higher level of risk of developing autism later on. There’s pretty cool stuff. We haven’t really been able to use that clinically yet, but the future looks really bright.
UVM Medical Center: As we wrap up here, let’s talk about the parents’ perspective as they get a diagnosis of a child with autism. It’s pretty scary, I would think. What do you tell parents at that moment?
Jeremiah Dickerson: I think it can be a very nuanced conversation. I think we all bring our own stuff to the table, in terms of what we’ve seen on television, what we’ve read about, what we find on the internet. It’s important that a diagnosis doesn’t change a child, in terms of who they are. Autism is really about a range of symptoms, but is also about identifying strengths and focusing on those strengths, and using those strengths to help a kid be successful in whatever way they can. I think also, just educating parents about the fact that there are teams of people out there in the community, and here at UVM, whose job it is to help these parents navigate that system of care, and help them get what they need in order to help their child be successful.
UVM Medical Center: Would you say that kind of support, those systems and services, has increased over time?
Jeremiah Dickerson: I think it has. I think people are more aware of the need for such services. Unfortunately, similar to anything in developmental pediatrics or behavioral health, we could use more people and more money. But, yeah, there’s been some growth over time, which makes me certainly optimistic that we’ll continue to see that growth.
UVM Medical Center: Well I hope you’re right. We’ve been talking to Dr. Jeremiah Dickerson, a child psychiatrist at the UVM Medical Center, and assistant professor at the Larner College of Medicine at UVM.
Jeremiah Dickerson: Thank you. It’s been a pleasure.