Written by Dr. Peter Szatmari
The follow up study has now been going for more than 12 years. The “children” are mostly in late adolescence, some have graduated from high school. The objective of the study is to see whether children with Asperger syndrome have a different outcome than children with high functioning autism. In general, we have found that those with Asperger syndrome do have better language and social skills and fewer autistic symptoms than those with autism in late childhood and into adolescence. Some have done remarkably well, better than we anticipated. Some continue to have real difficulties, especially in high school, coping with the social demands of being a teenager and with academic expectations. Some children with autism also do well, especially those who have developed good language skills before 8 years of age. In fact, once they develop fluent language, the children with autism look more and more like the children with Asperger syndrome.
We have been focussing these most recent assessments on the appearance of anxiety and depression in the teenagers. We have found that upwards of 40% of the children with Asperger syndrome and with autism have experienced at least one episode of a serious anxiety disorder or a depression at some point during adolescence. This is a much higher rate than the general population and means there is something about PDD that places the children at risk of these disorders. The anxiety and depression have been an extra burden for the teenagers and have often lead to aggression, suspension from school, isolation from social activities and poor school performance. These added problems are usually not recognized by professionals and are misinterpreted as “bad behaviour” instead.
At this stage of the study, we are trying to do two things. One, we are seeing the teenagers again to see how long the anxiety disorder and depression persists. We want to know if they are still feeling anxious or depressed and how it has affected their development. Second, we are trying to understand why these adolescents are at such high risk of these added problems. We know that children with Asperger syndrome have a slightly higher risk than the children with autism. This appears to be explained by their better language skills. It seems the better the language, the more likely the teenager will experience an anxiety disorder or depression. We are trying to understand why this might be so. It could be because, children with better language have a better understanding of social-emotional situations and this greater insight leads to depression. We are doing some tests of emotional understanding to see if this might be true. We are also wondering if a family history of anxiety or depression in parents or typical siblings might be associated with this increased risk. That is why we are inquiring about the family history.
It is very important that we understand why this group of children are at such high risk of anxiety and depression. With that understanding, we can then begin to think of treatments that can address these problems. As it stands, we do not really have any effective treatments for anxiety and mood disorders in PDD children, that specifically address their special needs. We are hoping that this study, which will be the first of its kind in the world, will be able to answer many of these questions and so improve the long term outcome of children with autism and Asperger syndrome.
Once these assessments are completed, we will probably not see the children again until they are all adults. It would be nice to do one final assessment to see what has happened to the kids after they have finished school; where are they living, how many have jobs, have friends, are dating and so on? This will represent the most comprehensive and longest lasting follow up study of high functioning autism in the world and the only study that has focussed on Asperger syndrome.
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