Why Does It Take So Long to Diagnose Asperger’s?
This week’s “Got Questions?” answer comes from Lauren Elder, PhD, Autism Speaks assistant director of dissemination science.
My 8-year-old son just received a diagnosis of Asperger syndrome. How could it be that it took us this long to realize?
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 studyreported 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.
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In any case, if you have Asperger’s Syndrome, you’re not alone. I was diagnosed with it years ago. Many people have it, and many people can function quite well in life with it..
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My question to this question is “Why not?”
It should take considerable time to diagnose someone with a disorder/illness in my opinion, especially one that could be very life changing.
Medicine is a science after all, and all doctors are just practicing. Is it better that doctors diagnose people on the first day of meeting them while having limited knowledge of their medical and social history? I think not! An early diagnosis for a child could be even more detrimental because it could put that young child in a metaphorical box, they may be given medication for said disorder that could have numerous side effects, and what if they don’t even have the disorder what if it’s just growing pains?
@dw817@xanga – always nice to have some support nice of you. . I suppose that since any psychologic assessments I had were for function things rather than why. adhd covered enough of the why. later as in 5 years out of school … two college tries… I have been shown from lay folk that I have a number of halmarks of asbergers… absolutely none of them in cognitions. I can’t parse math past limited two plus two type or some of 2 year algebra …so I’m right brained! at this point someone proving an earlier definition wrong or autism right wouldn’t help me in the slightest me think. hence
dw – goo for you with support
austiable. go get em timely information can save ages of frustration and help with the friends/acceptances necessary to help many find a healthy way.
You need to understand, Asperger’s Syndrome is high-functioning autism. In many cases neural pathways in the brain will find ways of compensating with difficulties and that can mask or cover up many symptoms of outright autism making it difficult to detect.
In any case, if you have Asperger’s Syndrome, you’re not alone. I was diagnosed with it years ago. Many people have it, and many people can function quite well in life with it.
Just stay close to your friends, listen to their advice, especially if they are saying you are doing something that can be a problem, watch your own behavior, and recognize the signals that cause difficulties with you.
And you’re gonna be OKAY !
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I was not diagnosed with Aspergers until I was 21 and sometimes I still get angry about that, since a lot of doctors and therapists had a look at me while growing up to find out “what was wrong”.