World Autism Awareness day is April 2, kicking off a month of increased focus on the prevalence of and responses to autism spectrum disorder (ASD). The College’s Institute on Community Integration is one of 11 nationwide sites that make up the Autism and Developmental Disabilities Monitoring (ADDM) Network, a Centers for Disease Control and Prevention (CDC)-funded alliance tracking more than 300,000 8-year-olds in the United States. Every other year, ADDM sites report the prevalence and characteristics of children with ASD in multiple communities.
ICI’s Jennifer Hall-Lande (pictured at CDC headquarters in Atlanta, GA, where she trained as an Act Early Ambassador in 2016) is one of ICI’s lead investigators, along with ICI Executive Director Amy Hewitt and Amy Esler on the Minnesota ADDM project, a team that also includes project coordinator Libby Hallas-Muchow. As the team prepares for the release of the 2020 Community Report from the ADDM Network, expected shortly, Hall-Lande and Hallas-Muchow agreed to answer a few background questions about prevalence data and ICI’s work in this area:
Q. The latest ADDM Network data on autism prevalence is expected soon. Can you bring us up to speed on the trends in the data in the last few years?
A. ADDM data is valuable in helping us understand not only the rates of autism, but also the characteristics of children with autism in our community. This data informs public policy and how we can improve services and supports. First collected in 2000, the data has shown relatively steady increases in the prevalence of ASD. Through those years, there have been changes in the way we define and diagnose autism. We really view it now as a spectrum, and therefore more children have come into the prevalence data over time, though the most recent changes in clinical definitions do not appear to have significantly affected the numbers. A robust, ongoing prevalence trend in the data shows more boys than girls (approximately 4 males to 1 female) being identified on the autism spectrum. An ongoing area of focus within the autism community is in lowering the age of initial diagnosis. We know that we can identify signs of autism as early as age 2, but the average diagnosis age remains around 4.3 to 4.8 years of age, around the time of the start of kindergarten. One hopeful prevalence trend, however, is that nationally we appear to be making some improvements at identifying children with autism across diverse communities.
Q. April is designated alternately as Autism Awareness Month, or Autism Acceptance Month, reflecting differences in the advocacy community about language and approaches around autism. Where does ICI’s work fall into this discussion?
A. Autism is viewed through many different lenses and we’re pleased to see the attention and focus being paid to the needs of ASD from all stakeholders. Our prevalence work is widely used throughout the community and is a strong policy advocacy tool, which has implications for appropriating resources and interventions. So, our focus is on providing data, early intervention and training that helps policymakers, communities, families, and individuals make informed decisions and support children with autism and their families. We acknowledge the complexity around topics such as causation, but our specific task on this project is providing the prevalence data to better understand rates of autism in our community. This data is a powerful tool for both understanding ASD in our community, but also for planning services and allocating resources to support children with ASD and their families.
