We're Overdiagnosing Kids with Autism, But Maybe That's Not Such a Bad Thing

New research suggests that autism may be overdiagnosed in nearly 10 percent of children. Here's why one mom thinks that's a good thing.
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Autism rates have long been reported to be on the rise, and the CDC claims that 1 in 68 children have the disorder. In July of this year, Penn State researchers challenged these statistics by looking at how diagnostic criteria have changed. They found that many related disorders were being lumped together under the umbrella of ASD. Another study, published this month in the journal Autism by a team of researchers from the Center for Disease Control, the National Institute of Health, and the University of Washington, follows up on this research and takes it a bit further.

The goal of this study was to determine, "who is more likely to lose their ASD diagnosis and why, and [...] to use parent-reported data from a probability-based national survey for these purposes." To this end, researchers looked at how kids got the diagnosis initially, what their characteristics were at the time of the diagnosis, and why parents thought their kids lost a diagnosis.

The study's findings suggest that more than 9 percent of children diagnosed with ASD actually are mislabeled, and that 4 percent of children who are diagnosed eventually lose their labels through early intervention and other therapies. Parents offered many reasons for why they thought their children lost an ASD diagnosis—changes in information about the child, the child never had ASD but was diagnosed under that label to receive services, and changes due to maturation.

So, are we really overdiagnosing kids with autism? It seems fairly clear from the heaps of research cited in this new study that many children with related health issues—ADD, ADHD, and speech or developmental delays— are getting autism diagnoses early on and then losing them as they mature. As I've said before, however, I don't think a misdiagnosis is necessarily a bad thing if it opens up more services to kids who need them. I also think that research like this helps us examine our perceptions of autism, as it shows that it's a dynamic disorder and it challenges us to adjust our own thoughts about ASD accordingly. Finally, even if we are overdiagnosing kids with ASD, research like this underscores the point that children are dynamic, growing, maturing humans whose potential is not limited by the bounds of an autism diagnosis. Kids change, their gifts often appear later in life, alternative communication methods can help them overcome other challenges—and all this is a reminder, for parents new to ASD or for parents like me, whose children were diagnosed many years ago, to keep hoping, keep working with our children, and know that the future will most likely look very different than the present does in terms of your child's abilities, interests, and possibilities.

Jamie Pacton lives near Portland where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.com, Facebook (Jamie Pacton), and Twitter @jamiepacton.

This video from the Kennedy Krieger Institute, in Baltimore, features three children who show early signs of autism spectrum disorder playing with toys and interacting and communicating with others. It compares the footage on each of these children to that of typical children in the same situations. “It helps parents to articulate to their pediatrician any behaviors that concern them,” says Rebecca Landa, Ph.D., director of the Center for Autism and Related Disorders.

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