Q&A: Autism guidelines include messages for clinicians about screening
The AAP published updated clinical guidelines for autism spectrum disorder, or ASD, that offer clinicians insight into new strategies for identification and early intervention of the disorder.
In the clinical report, Susan E. Levy, MD, MPH, attending physician at the Children’s Hospital of Philadelphia and professor of pediatrics at the University of Pennsylvania’s Perelman School of Medicine, and colleagues stressed the need for behavioral, health, leisure, education and family support for children with ASD, as well as the importance of primary care providers staying up to date on ASD diagnostic criteria.
Healio spoke with Levy about the most clinically relevant updates to the guidelines and future avenues for ASD research. – by Eamon Dreisbach
Q: It has been about 12 years since the ASD guidelines were last updated. What was the impetus for this update?
A: Care of children with ASD is a big topic, and with these kinds of clinical disorders, there are different subcommittees that work on producing clinical reports. It was completed through the Council on Children with Disabilities. We felt it was time to update the report, and it took a while for us to finish it, I think in part because of the really extensive material that we had to go through.
Q: The report mentioned one in 59 children are affected with ASD. What are the contributing factors to the higher rate of ASD diagnoses in recent years?
A: The increase in prevalence is related to several factors. One is that people are more aware of it, so they're looking for it more.
Another factor is over time, especially since the 2007 clinical report when the prevalence was lower, the criteria for making the diagnosis has changed. In 2013, the Diagnostic and Statistical Manual of Mental Disorders, 5th edition (DSM-5) came out, which is a little bit different in terms of the classification. The DSM-5 put it into one category of disorder, ASD, so that change in classification and criteria for making the diagnosis has made a difference.
Another reason that it is more common is the diagnosis is fortunately being made earlier. The surveillance data are based on the study that the CDC does where they look at children who are aged 8 years. If over time we are diagnosing the children earlier, then you are going to have a greater number.
Lastly, it is more common than it used to be. We're not totally sure about the all the different reasons, but we think that it is a combination of reasons.
Q: What are the major updates from this report that pediatricians and clinicians should be aware of?
A: There are five different areas that are really focused on clinicians. The first message is that the pediatrician should continue with surveillance and screening to help identify children as early as possible. Every child should be screened for developmental or behavioral problems at 9, 18 and 30 months. Then, ASD-specific screening should occur at 18 and 24 months. The emphasis in this report is that even if providers are not sure if the child has autism, if the child has delays or they're suspicious of them having autism, they should be referred for treatment — early intervention for the younger kids and school programs for the older kids. Early identification and referral for treatment should happen.
The second big piece is that individuals become more aware of concomitant conditions that are common in kids who have ASD. Before we focused more on “just autism,” but now we realize that other conditions such as ADHD or intellectual disability may have an impact.
There are also other medical issues that pediatricians should be looking for. Seizures are more common, and ADHD may occur, as well as sleep and gastrointestinal problems.
The third piece that we want pediatricians to think about is that behavioral interventions are effective, and not just the classic applied behavior analysis. All kinds of other behavioral treatments are effective.
The fourth message is that research in causes of autism has really accelerated, but we do not have all the answers yet. One of the recommendations we made was that for every child who has a diagnosis of autism, the family should be offered the opportunity to have an evaluation to determine if there is a specific etiology or cause that can be identified.
The last piece, which I think is one of the bigger pieces, is that a child with autism most often will grow up into an adult with autism. We are encouraging pediatricians and trying to give them the ability to be more proactive in terms of working with families to prepare them for different transition points, like going to middle school, high school and vocational training, so that they're more prepared to support the family during adulthood.
Q: Is there a specific area of ASD that you think warrants further exploration?
A: I think that the area of research in terms of the cause and causes of autism is exploding, and we will continue to have more research. The second area that people are continuing to work on, and really deserves to have more work on, is to convey the emphasis on early identification. It may be that the two areas will support each other. The hope is that, at some point, there will be a lot of studies about the function of individuals with autism and biological screening tests that can be done that can help identify the risk for autism. We are hoping that research in the area of early identification and the causes can be synergistic and help us identify the children as early as possible.
Q: What advice do you have for parents and patients regarding ASD?
A: The first advice I have for new parents is if you have any concerns about your child's development or behavior, talk to your pediatrician, bring it up and discuss it with them. The training they're getting and the recommendations that are coming out of the AAP are really supporting pediatricians being tuned in to looking for issues and engaging in what we call “shared decision-making.”
If a family has concerns bringing it up to the pediatrician, the pediatrician can say, “Well why are you concerned? What areas are you concerned about? Let's see what we can do.”
I think the biggest recommendation is if parents are concerned, they should engage their pediatrician in a discussion about it and come up with a consensus of ideas about what the next steps are.
From the other end, it is important for pediatricians, if they have concerns, to not worry about bringing it up with families and then and engaging in that discussion. I think the partnership and the mutual discussion is really important.
CDC. Research on autism spectrum disorder. https://www.cdc.gov/ncbddd/autism/research.html. Accessed December 18, 2019.
Disclosure: Levy reports no relevant financial disclosures.