The Reasons Behind the Rise in Autism

Laurie Scudder, DNP, PNP; Susan L. Hyman, MD


May 06, 2014

Diagnosing Earlier

Medscape: AAP and other organizations all emphasize the importance of early identification and intervention. Despite this, according to a recent review, the average age at diagnosis is still between 38 and 120 months.[8] Can you discuss the best strategies and resources to improve early recognition?

Dr. Hyman: Yes. It's critically important to identify children with autism early, because we believe that outcome can be changed by evidence-based intervention at the earliest age possible.

Before the AAP developmental screening recommendations in 2006,[2] the recommendation had been for pediatricians to monitor development more informally in the primary care setting. What studies have shown is that even though pediatricians have a good eye for most aspects of child development in the course of a clinic visit, many children are missed without formal screening. So the recommendation for general developmental screening in primary care was generated with autism specific screening at 18, 24, and/or 30 months.

The reason you need autism-specific screening is because general screening is excellent at picking up language and learning delays and behavior problems, but does not include the social questions that will distinguish children with autism at a very early age.

In a stepwise fashion, I'd like to comment on what is being advocated by the AAP and partners for identification of young children with autism.

Number 1: You need to educate parents. You don't need to scare them with understanding the red flags for autism, but parents need to understand what constitutes typical development. In this very electronic age, parents must know that they have a critical responsibility to interact with their babies socially and teach them how to play. The Academy has information for parents on language milestones, on how to interact with a baby and toddler, and some very robust materials have been developed by the CDC in the Learn the Signs. Act Early program.

By teaching parents what is typical and what to expect, we also want to empower them to express their concerns to pediatricians and child health providers in the context of both monitoring and formal screening. So step 1 is to educate families about typical development, as well as how to promote typical development.

Step 2 is to educate pediatric clinicians in screening and appropriate use of screening instruments. This includes screening at the recommended ages and using screening instruments in the way that they're intended.

The most commonly used screening tool for autism is the Modified Checklist for Autism in Toddlers, Revised (M-CHAT-R™). It is available free of charge, comes in several languages, and can be done by front office staff. It is a 23-item paper and pencil task. Electronic versions that are available online and electronically scored are commercially available.

What providers need to know is that the M-CHAT is not a stand-alone tool. Like many screening tests, the M-CHAT overidentifies children at risk; positive screens need to be followed up by an interview, a template for which is available online and also free of charge, that allows the clinician to tease apart whether the positive answers are because of language delay or autism.

The data on the M-CHAT would suggest that although only a minority of children who screen positive will be diagnosed with autism, almost all of the children who screen positive when confirmed by the standard interview have a developmental delay that is worthy of early intervention. It's critical that the child health provider follow up a screen with the interview.

The third step, which is absolutely critically important, is the recognition that a positive screen is only a screen and not a diagnosis. The child needs to be evaluated. One of the things that's very concerning to us is the number of families who either don't follow up on the recommendation for evaluation, or clinicians who don't refer positive screens for further evaluation, because that is the next step that needs to occur before a child gets into effective early treatment.

So step 1 is parent education, step 2 is screening in primary care, step 3 is referral to services -- and the last, fourth, piece that is new and very exciting is a government initiative called Birth to Five, Watch Me Thrive. This program provides education about screening and early child development to daycare and child education groups, as well as primary care providers, to encourage communities to support screening and education about typical and atypical milestones in other settings.

To get back to your original question regarding best strategies for identification, let me say one more thing. The CDC data[1] identified that parents were concerned about delays at an early age, but that diagnosis didn't occur until over 4 years of age in their sample. I think what the 2006 AAP screening recommendations will do to future data is push diagnosis earlier, because pediatric clinicians will have the tools and the language to better identify concerns.

Medscape: You emphasize that children with positive screens should not just continue to be monitored. They need to be referred for a more comprehensive assessment and intervention if appropriate. Is Child Find a reasonable place to start anywhere in the country?

Dr. Hyman: Child Find is a federal, unfunded mandate that requires that states and territories provide assessment and intervention for children 0-3 years of age with development delays or at high risk for developmental delays. Children younger than 3 years should be referred to their local early intervention program; children aged 3-21 years are served by the educational system.

Child Find does not require that a request for evaluation, either through early intervention or the school system, be made by a healthcare or other professional. A parent who is concerned about their child can make that request as well.

Child Find may not be as highly funded in some areas. But the same legal injunction to provide developmental assessment and intervention exists in all states. The federal law requires free and appropriate public education, and although certainly not all states have the same resources, all must provide services.

There's been a lot of discussion as to the definition of what is appropriate, and the evidence supporting different degrees of intensity of service and different types of service is another important area of research. But no matter where a family lives, if a child fails a screening test, they should have evaluation either through early intervention or the school system, and services that are appropriate in a broad sense should be offered.

Medscape: As an adjunct to your point about the need to educate families about the importance of interacting with their infant, a fairly long-standing recommendation from AAP is that a child younger than 24 months should have no screen time.[9] In your experience, is this a recommendation that the pediatric community and families have embraced?

Dr. Hyman: The AAP recommendation of no screen time for the youngest children and 2 hours or less of total screen time for older children is a recommendation that, in our modern time, is felt to be untenable by many families. I think that what we really need to do is educate families on the importance of interacting with babies, toddlers, and even older children. This goes beyond autism and ADHD. This is how we need to combat obesity and promote interaction.

Society is changing. How we interact with each other is modified by social media and electronics. Young people interact less face to face, and more electronically. That doesn't make kids autistic. But we have to look at the impact of technology. Kids may have shorter attention spans if they grow up with reliance on media that has relatively short segments of material and requires continual interaction for reinforcement, such as some video games. Violent video games desensitize children to some aspects of violence.

We need to use media and use electronics to help educate parents and also as a clever and low-cost way for intervention. We don't want to teach a child to respond only to a screen, but evidence-based intervention can be quite costly. Are there technological ways to extend the workforce and extend treatment? That is, I think, going to be a burgeoning area in the next few years.

I think that we've lost sight of the critical role of parents as therapists -- that the interaction that goes on every time you change a child's diaper or interact with them is a way to build communication and social reciprocity. I think that it is critical to make certain that parents understand their role and their responsibilities. Equally, therapists must also understand how important it is to include the parent and make certain that the parent understands what it means when we say that intervention is most effective if early, intense, and generalized to the home environment.

The medical home is a really important concept in general pediatric care, but it's even more important for families affected by ASDs. A consistent source of culturally competent, available medical care in a setting that views parents as partners is critical for building the relationship that allows effective identification and screening. Once a child is identified with autism, that setting provides for the care needs of children with chronic illness, such as ASDs. The medical home is a partnership with a professional team to help a family navigate their way through not only early services, but also elementary school, middle, and high school and into adulthood.


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