Why the Delay in Asperger Diagnosis?

Friday, September 21, 2012 View Comments

My 8-year-old son just received a diagnosis of Asperger syndrome. How could it be that it took us this long to realize?

This week’s “Got Questions?” answer comes from Lauren Elder, PhD, Autism Speaks assistant director of dissemination science.

It’s common for Asperger syndrome/high-functioning autism to be diagnosed much later than more severe forms of autism. In a 2008 CDC report, the average age of Asperger diagnosis was 6 years. A 2007 British study reported further delay in Asperger diagnosis – averaging around age 11.

Children with Asperger syndrome clearly fall on the high-functioning end of the autism spectrum. By definition, they do not have language or intellectual delays. They may lack the kind of early behaviors – such as no babbling – that often flag more severe forms of autism in toddlers. Clearly, this makes recognition and diagnosis harder.

One study, for example, found that children with autism and no significant language delay are diagnosed, on average, more than a year later than are children with obvious language delays. Another study found that children with autism and typical or superior intellectual abilities are diagnosed significantly later than are those with learning difficulties.

The hallmark of Asperger syndrome is difficulty with social interactions. Naturally, this may not be obvious at young ages when social settings are simple. Think about how preschoolers play together – say, running around pretending to be superheroes. Now consider a group of 8 year olds – or teenagers! As the “rules” of social behavior get more complex, problems with social interaction become more obvious.

There’s another difficulty inherent in diagnosing Asperger syndrome. Many of these children are better at interacting with adults – including physicians and school counselors. To recognize their social difficulties, one may need to observe how they interact with their peers.

The good news is that we’re getting better at recognizing and helping children on the high-functioning end of the autism spectrum. Studies are bearing this out. We want to do better, of course. Here at Autism Speaks, we’re dedicated to decreasing the average age of diagnosis and improving access to early intervention for all children affected by autism spectrum disorders. We call this initiative “Move the Needle" and hope you’ll follow the link to learn more about it.

Now that your child has a diagnosis, you can take advantage of therapies that can help him improve his skills. To learn more, I recommend Autism Speaks Asperger Syndrome and High Functioning Autism Tool Kit and this site’s webpage on “Asperger syndrome.”

Autism Speaks is funding a number of studies aimed at helping better understand Asperger syndrome and support those affected by it. You can explore these and other funded research projects using this website’s Grant Search.