Long term studies are an under explored area in autism. Research interest in autism has grown a great deal and understanding of autism has grown. Thus we have few studies from the past to form the basis for long term studies and the populations may not represent current populations.
The Utah/UCLA study from the 1980’s does present one possibility for long term follow up. The study was performed when the DSM III was still in effect, for example of how the population selected then was different. A recent study showed that there were autistics missed then, even among the intellectually disabled.
With that in mind, there is still value in exploring long term outcomes in this group. In particular, the present study explores the increased mortality of autistics. In particular, mortality due to “iratory, cardiac, and epileptic events” were more common among autistics, who died nearly 10 times more often (by roughly age 30) than non autistics.
This study’s purpose was to investigate mortality among individuals with autism spectrum disorders (ASD) ascertained during a 1980s statewide autism prevalence study (n = 305) in relation to controls. Twenty-nine of these individuals (9.5 %) died by the time of follow up, representing a hazard rate ratio of 9.9 (95 % CI 5.7-17.2) in relation to population controls. Death certificates identified respiratory, cardiac, and epileptic events as the most common causes of death. The elevated mortality risk associated with ASD in the study cohort appeared related to the presence of comorbid medical conditions and intellectual disability rather than ASD itself suggesting the importance of coordinated medical care for this high risk sub-population of individuals with ASD
More long term, longitudinal and retrospective, work is needed to fill in some major knowledge gaps. Some is ongoing but we need to not only mine the data from the past but also law the groundwork for future long term studies.
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By Matt Carey
Left Brain Right Brain 
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