John Tuman is used to explaining his 4-year-old daughter's behavior to strangers. Other parents usually give him a blank stare or make a polite passing comment. One day at a park near their home, Tuman and his wife were surprised to find that every other parent on the playground could empathize. Each also had a child with autism.
That unexpected break from the social isolation the Tumans often feel was overshadowed by what the unique experience seemed to underscore: the rising prevalence of autism.
"When I first started telling people about Celeste, they would say things like 'Oh yeah, I heard about (autism) on television,'" Tuman says. "But lately it seems people have a much more personal frame of reference, like a family member or a neighbor who has autism."
Countering Prevailing Thought
As a political scientist, Tuman has long studied how social and educational
policy and how different governments respond to and fund
special education. After Celeste's diagnosis, he began experiencing
social service and educational systems as a parent as well. "As an
academic, I naturally believe that some things can be figured out
empirically, and I noticed that some assertions were being made
about autism — often to defend a lack of public policy — that
were based on very weak scientific evidence."
Tuman voraciously read everything he could about his daughter's condition. His studies brought him across research by Paul Shattuck of the University of Wisconsin that attributes the increase in autism diagnoses to faulty reporting. But, based on what he knew about Nevada's reporting practices, Tuman saw critical flaws in the study.
Tuman and his wife, Danielle Roth-Johnson, a visiting professor in the women's studies department, collected data from all 17 school districts in Nevada. They teamed with professor Sheniz Moonie, an epidemiologist and biostatistician in the School of Public Health, for the first comprehensive study on autism diagnoses in Nevada's schools.
They found a near tenfold increase in the administrative prevalence of autism in Nevada schools from 1995 to 2004. Administrative prevalence is the number of children who have been diagnosed with autism or an autism spectrum disorder by school authorities and who receive special education services.
Across Nevada, the prevalence increased from an average of one in 3,750 students in 1995 to one in 422 in 2004. Only the Esmeralda School District — which enrolls fewer than 80 students — reported no prevalence during the study period.
No Substitute
Tuman challenges Shattuck's hypothesis that the
increasing administrative prevalence nationwide
is a result of diagnostic substitution — the theory
that children who were previously classified as
having mental retardation or a speech delay are
now being classified as autistic.
"Our research shows no evidence whatsoever to suggest that diagnostic substitution is driving the increase in autism prevalence in Nevada," says Tuman. "If diagnostic substitution had been a factor, the study would have shown a corresponding decrease in the reporting of other learning disabilities. But some of those are also on the rise."
Tuman notes that although the prevalence has increased significantly, funding for autism-related education programs has not. Federal funding for all special education programs in Nevada has been cut this year. He hopes his research will increase awareness of autism spectrum disorders and help policymakers correct the discrepancy between the increasing prevalence and public policy.
"By investing in the education of these children on the front end, we can mitigate the barriers to their learning and vastly improve their future and potential for being self-reliant," says Tuman. "Successfully doing so would ultimately translate into an enormous cost savings to society, particularly because this population would be much less likely to require government assistance in the future."
As a parent and advocate, Tuman admits that he often gets frustrated with public policy and funding for autism, but as a social scientist he understands the systemic problems that must be worked through. Ultimately, he hopes his work helps provide Celeste and other children liker her with a good education.
"My hope is that she is provided with sufficient opportunities to have a full and complete education so that she can do whatever she wants to do as an adult," he says. "That would be my hope for her regardless."
