Third, the Autism Registry was established three years ago and only began to collect data in 2006. It only captures information from birth until age 18, and allows parents to opt out of placing their child on the registry. Thus, it does not yet have up to date information on autism prevalence numbers. The Division of Public Health has announced that the registry will be a priority for activities in the year 2009, so it should be providing better data in the coming years.
What can be drawn from these numbers, however, as explained by Dr. Newshaffer, is that the current adult prevalence numbers will cease to be relevant. Instead, because of improved early diagnoses, the children’s numbers will be more valid and reliable and will replace the current estimates of the adult population as children progress into adulthood. In other words, the prevalence rates for children should be adopted as the long range projections for adults.
Similar with the national numbers, there is evidence of an increase in autism prevalence in Delaware. The data on the public school population shows that the average annual rate of increase in autism in ages 3 to 21 from the year 1991 to 2006 was 15% and the latest data for 2006 shows a 19% increase.
The best estimate of childhood prevalence is 1 of every 150 children have an autism spectrum disorder.
It is difficult other than through sophisticated research projects to obtain actual state based prevalence rates and prevalence rates remain estimations.
There is no reason to expect that the prevalence rate in Delaware is different than the CDC estimate of 1 in 150.
Currently, the Department of Education special education classification data represents the best identification and estimation of children with autism spectrum disorders that are projected to enter adult services. Public education is a mandatory program and school districts make an effort to identify students with autism spectrum disorders (Autism, Asperger’s, and PDD-NOS) thus we have clear data on the minimal number of individuals who will be entering adult services over the coming decade.
Department of Education data still under estimates to some degree the actual number of students with autism spectrum disorders as the CDC study found that some students with autism spectrum disorders receive special education classifications other than autism, based on the best placement for their educational needs.
The Department of Education data should be utilized by policymakers and state systems administrators to estimate and project trends in adult service needs.
Sharing and coordinating data between education and adult services will help assure a more seamless transition from education to adult services.
The Autism Registry, housed in the Division of Public Health, has the potential over time to become an accurate database for identifying individuals with autism spectrum disorders.
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