A diagnosis of autism takes a toll on individuals, families — and also society. By some estimates, autism spectrum disorders account for more than $35 million in direct and indirect costs to the United States each year. Individuals with the condition are more likely to need health care services, behavioral treatment and have difficulty sustaining employment and transitioning into independent adulthood.
But estimates are just that — no comprehensive count of autism prevalence exists. Without a reliable count, states and social services organizations are in the dark about how to respond to this public health problem. Who needs services? Where do the services recipients reside? What services are most urgently needed?
In Pennsylvania, at least, public health officials are closer to an answer. A Drexel researcher is leading a first-of-its-kind administrative census of the number of individuals diagnosed with autism living in Pennsylvania. Lindsay Lawer Shea, senior manager and project director at the A.J. Drexel Autism Institute, is working with the Bureau of Autism Services in the Pennsylvania Department of Public Welfare to understand the true size and demographic characteristics of the state’s autism population receiving services.
The project will use data it gathers to determine the need for autism-specific services and programs, which policymakers can use to design more effective services.
The original Pennsylvania Autism Census Project was published in 2009 using data from 2005. At that time, the census counted close to 20,000 Pennsylvanians receiving autism services. Preliminary findings based on 2011 data show almost triple that number, for a total of over 55,000 children and adults on the autism spectrum statewide receiving services.
These numbers are on the low side, because they don’t include individuals not receiving services through state programs or who are misdiagnosed or never formally diagnosed.
“The Centers for Disease Control estimate that more than 1 percent of the population has autism; with the numbers we’ve counted, we’re still missing tens of thousands of Pennsylvanians, mostly adults, because we’re only counting people who receive services,” says Shea.
She says that official estimates suggest the number to be around 130,000. Still, Pennsylvania’s is one of the most
comprehensive tallies in the country and the first of its kind to date.
“Numbers like these are really powerful,” says Shea. “They help when we think about things like resource allocation and where to implement programs.”
For example, the Adult Community Autism Program is one of two programs in Pennsylvania that helps adults on the autism spectrum participate in their communities through physical, behavioral and community services.
“ACAP is the first of its kind in the United States and results like the census can help to figure out where to expand programs like that to maximize their impact,” Shea says.
The census can also identify vulnerable population groups that need extra attention, such as people who don’t speak English, or where rates of diagnosis are rising the fastest. The ASERT Collaborative, which Shea directs in the Eastern region of Pennsylvania, is a unique partnership between government and academic institutions working to understand and meet these needs.
“We’re guessing on how to take care of this group, which is growing, and we need to spend time and energy with this data to have an evidence-based way to do so,” Shea says.
