Diverse Reports of Autism Spectrum Disorder (ASD) Prevalence Rates Underscores Need to Work Together

Last month, an article in the Journal of Pediatrics estimated the prevalence rates of ASD to be 1 in 40.

According to the article, “Although not fully understood, this increase likely results from multiple factors including broadening diagnostic criteria, increased provider ascertainment at earlier ages, increased parent awareness, and an increase in some risk factors such as births to older parents.”

This differs from rates released in April by the Centers for Disease Control (CDC), which estimated prevalence to be 1 in 59. It seems that for every report about rates, there is another report that contradicts it. This can be confusing and frustrating for individuals, families, community leaders, professionals, and even policy makers.

“People need to understand why we keep hearing new numbers, different numbers,” said Melissa Bacon, Director of Government Affairs and Stakeholder Engagement at OCALI, Ohio’s trusted resource in the areas of autism and disability, and chair of Ohio’s Interagency Work Group on Autism (IWGA). “The data is collected differently – some of it comes from families; some of it comes from record reviews. Whatever the source, we know the numbers are on the rise. What we also know is that Ohio is leading the way in developing a public health response to autism. Our state agencies have worked together on a coordinated, proactive response. We’re not waiting for the numbers to rise or get to a ‘tipping point.’ We’re past that. For more than 10 years, we’ve been working together to plan and to respond, not simply to react.”

IWGA is a multi-agency collaborative effort, with leadership from the Ohio Department of Developmental Disabilities and OCALI. Informed by individuals, families and stakeholders, IWGA meets monthly to review state policies, learn from current research and data, share learning and identify opportunities to better communicate and coordinate autism policy. A hallmark of the IWGA’s efforts is the creation of an innovative, free, online video training series, ASD Strategies in Action, now being used by more than 20,000 people across Ohio, giving them practical ways to care for and support loved ones with ASD, from early childhood through young adulthood.

“As a parent of a daughter with autism myself, I understand how frustrating it can be to understand the reasons behind the different reports, as well as how it can be disheartening to see rates on the rise. However, what helps me sleep better at night is knowing that Ohio is really leading the nation in our cross-agency work – we aren’t working in silos, but instead, we’re working across service agencies, education and healthcare providers, professionals and families to bring everyone together to identify viable services and solutions that are based on research and real-life experiences – to help Ohioans with autism live their best lives for their whole lives. I’m proud of our state, and I hope others across the country will follow in our footsteps – because the need for collaboration does not stop at the state border.”