At the IACC meeting OARC released it’s new IACC/OARC Autism Spectrum Disorder Research Portfolio Analysis Web Tool. There are many ways to explore what research is being performed. Since the CDC autism prevalence estimates get a lot of attention, it seemed valuable to see what is in the pipeline with them. The CDC estimates are made through ADDM, the Autism and Developmental Disabilities Monitoring Network, which is largely sites in various states working with the CDC, not the CDC itself.
In 2009 there were projects ongoing in Alabama, Arizona, Arkansas, Colorado, Florida, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah and Wisconsin, as well as the Metropolitan Atlanta Developmental Disabilities Surveillance Program/Autism and Developmental Disabilities Monitoring (ADDM) network – Georgia.
13 states plus the Metro Atlanta study.
The latest prevalence estimate report from the CDC included 14 sites: Alabama, Arizona, Arkansas, Colorado, Florida, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah, West Virginia, and Wisconsin. West Virginia appears to no longer be a part of the study.
In 2010 there were projects ongoing in 11 states plus the metro Atlanta site. Florida and Pennsylvania are no longer funded.
Now, here’s where it get’s interesting. At least to this reader. There are “expanded” projects in 2010:
Through surveillance of ASD among 4-year-old children, CDC can better understand the population characteristics of young children affected by ASDs and better inform early identification efforts.
Arizona, Missouri, New Jersey, South Carolina, Utah and Wisconsin are starting to count 4 year-olds as well as 8 year olds. This will be a good thing. As they say, this will inform early-intervention efforts. This will also benchmark 4 year olds, then (I assume) 4 years later find out what that same cohort looks like.
The CDC autism prevalence estimate reports find a large number of autistic students unidentified even at age 8. They are identified through the records review of the ADDM. This and other studies raise the question of what factors are involved with delays in autism diagnosis. A study is ongoing to answer just that question: Understanding the delay in the diagnosis of autism. The study has already resulted in numerous publications.
The Strategic Plan calls for even more expansion of the ADDM:
Expand the number of ADDM sites in order to conduct ASD surveillance in children and adults; conduct complementary direct screening to inform completeness of ongoing surveillance; and expand efforts to include autism subtypes by 2015.
Expanding to include adults is a good idea, but extremely tough. The current method uses educational and medical records of students. Obviously educational records will not be available for adults. This will make it difficult to make comparisons between adults and children in the same state. Most likely, the estimate will be lower than the actual autism prevalence in adults.
There is a study by the Mayo Clinic on adult autism prevalence and at least one more I am aware of.
Surveillance efforts are expanding into better identification of young children outside of ADDM. Two studies, the California Monitoring of Early Childhood Autism (CA-MECA) and the First Words Project: Implementing Surveillance to Determine the Prevalence of ASD project in Florida. Both are looking at young children (<4 years old) or infants (as young as 18 months). Both studies have been ongoing since 2006.
Studies are ongoing outside the U.S.. Including an Autism Speaks funded study in Kwa Zulu Natal (South Africa). KwaZulu-Natal (KZN) Autism Study will “…test how best to identify and assess children with ASD in the Zulu language and culture, explore the prevalence of autism in South Africa, and further explore the hypothesized relationship between autism and HIV infection.” The Korea Autism Study (also funded by Autism Speaks), which last year announced a prevalence of 2.62% using a whole-population screen, is ongoing.
Surveillance projects will generate questions, and that has definitely happened with autism surveillance work. Questions of why the estimated prevalences are increasing and why some groups are identified later than others are a couple of the big ones. Based on this quick look through the ongoing projects, there appear to be a number of projects in the pipeline which will probably shed some light on existing questions as well as spark new ones.
by Matt Carey