Preview: Prevalence Data and Autism Awareness

Jennifer Hall-Lande, pictured at the CDC headquarters in Atlanta, GA, where she trained as an Act Early Ambassador in 2016.

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 University of Minnesota’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.

Q. Our work has sought to monitor prevalence among certain demographic groups, but there has been a caveat with that data that it is not statistically significant. If that’s true, why do we report it?

A. Our MN-ADDM team remains committed to looking at autism rates across diverse racial and ethnic communities. Our team was the first ADDM site to track prevalence in our local Somali and Hmong communities. We want to share this data as transparently as possible, but we also must be clear about the limitations. Sample sizes in some groups in the last study year were too small to discern if racial and ethnic differences across groups were real or occurred by random chance, so there were no statistically significant differences in prevalence among those groups. We will continue to collect data and monitor these trends. Over time, we also hope to widen the geographic reach of our data collection to include more rural areas in the state.

Q. Beyond prevalence, what work in the field is showing promise in making life better for people with autism?

A. One of our primary goals is to connect the data on the MN-ADDM project to outreach and high-quality early intervention. We promote early developmental monitoring and regular developmental screening through our Learn the Signs, Act Early initiative. Our partnerships in the community promote early intervention and the notion that the earlier we get to kids with autism, the better the life outcomes. Our colleagues at ICI conduct remote telehealth work with families (see story above) who are on waiting lists to receive in-office services, providing critical access to promising early intervention and behavioral strategies sooner. We also work with a variety of state agencies, organizations and education partners in both formal and informal arrangements to align our work with state programs and policy initiatives. And through our Minnesota Leadership Education in Neurodevelopmental Disabilities (MNLEND) program, we’re building key interdisciplinary partnerships and training the next generation of leaders in the field of autism.

Q. What about the young adults who were among the first wave of those diagnosed in the 1990s using broader screening techniques? What does the future look like for them?

A. Some researchers within the field describe the current autism prevalence data as predicting a “tidal wave” of young adults with autism transitioning out of public schools into an adult services system that is not always sufficiently equipped to meet their needs. Many adults with autism are struggling with key quality of life indicators, such as community living and employment. Several ADDM sites across the country are piloting data collection on 16-year-olds, which will help us to better understand what that population looks like and how to better serve them across life transitions in their adult years. This is a critical area of study, and we all need to continue to work on better understanding how to meet the needs of individuals with ASD across the lifespan.

Q. Any closing thoughts on the upcoming ADDM data release?

A. ADDM data is a valuable resource within our community. Our MN-ADDM team works hard to provide high-quality autism prevalence data, and we are looking forward to sharing our most recent autism prevalence rates to the community. We recognize that behind each of these numbers is a child with autism and a family in need of high-quality services and supports. Ultimately, we hope our data will be used in ways that improve the lives of individuals with autism and their families across the lifespan.