The Case for More and Better Research
Sixty-seven children are newly diagnosed with autism spectrum disorders every day. More children will be diagnosed with autism this year than with AIDS, diabetes, and cancer combined. Despite being the fastest-growing serious disability in the United States, autism spectrum disorders currently receives less than 5% of the research funding of many less prevalent childhood diseases. In 2007, leukemia, which affects 1 in 25,000 children, received $310 million in private foundation funding for research. Autism, which affects 1 in 150 children, received $42 million. The total 2007 National Institutes of Health budget was $29 billion; $127 was directed towards autism research. This represents 0.43% of total NIH funding. Autism costs the nation over $35 billion per year; this amount is expected to rise dramatically over the next 10 years.
To learn more about the National Institutes of Health’s autism initiatives please visit www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/index.shtml.
In 2004, the Pennsylvania Department of Welfare convened a task force to examine the growing issues surrounding autism spectrum disorders across the Commonwealth. The Autism Task Force, comprised of over 250 family members of people living with autism, service providers, educators, administrators and researchers, was charged with developing a plan for a new system for individuals living with autism and their families that would make Pennsylvania a national model of excellence in autism service delivery. One of the subcommittees of the task force examined issues related to research and ASD’s in Pennsylvania.
As documented in their report, the Research Subcommittee concluded that many current clinical practices are not evidence-based. The gap between research findings and dissemination to practitioners and families routinely exceeds 10 years. The overall lack of research often leads to poorly implemented and costly treatments with little to no monitoring. The lack of well designed research protocols in adolescent and adult populations is especially apparent. The subcommittee concluded that education for practitioners on understanding, assessing, and evaluating scientific study reports is critical for making judgments about the validity of proposed treatments.
To learn more about the Autism Task Force’s findings, please visit www.dpw.state.pa.us/ServicesPrograms/Autism/Reports/TaskForce.