Many States Unable to Meet Growing Demand for Autism Services, Physician Faculty Scholar Finds
Publication Date:
Jul 12, 2010
Most of the state programs charged with providing early treatment for children with autism spectrum disorders (ASD) have been unable to meet the demand for their services following a 2007 recommendation by the American Academy of Pediatrics (AAP) for universal screening of 18‑ and 24-month-old children for ASD, according to a new study. Researchers found that these early intervention (EI) programs─which are the primary source of help for virtually all poor children who show evidence of ASD before the age of 3─lack the staffing required to help these children during a crucial window when the severe, lifelong effects of autism may be reduced.
The study, “Can State Early Intervention Programs Meet the Increased Demand of Children Suspected of Having Autism Spectrum Disorders?,” appears in the July issue of the Journal of Developmental and Behavioral Pediatrics. It is the first study to assess the capability, as measured by personnel shortages and service hours, of early intervention programs at the state and territory levels to provide services for children with ASD, and was funded by the Robert Wood Johnson Foundation Physician Faculty Scholars program.
“In the first three years of life, children with autism spectrum disorders can be helped to learn skills that may determine whether they are able to become functional adults,” said Jason Wang, M.D., Ph.D., senior author of the study and an Assistant Professor of Pediatrics and Public Health at Boston University and Boston Medical Center. “Yet our study shows that most state-level early intervention programs are unable to provide recommended levels of service for these children.”
The researchers found that, on average, most state EI programs do not provide 25 or more weekly hours of services for children with ASD, as is recommended by the National Research Council. Among the 60 percent of programs reporting their number of service hours, 44 percent indicated that children with an ASD diagnosis receive five or fewer weekly service hours. Only 8 percent (four states) reported more than 20 hours of services per week for children with one of the subtypes of ASD.
Wang added, “In terms of demand, the floodgates haven’t even opened yet. The American Academy of Pediatrics’ call to require universal screening is intended to ensure that children who screen positively for autism spectrum disorders can be helped. States must step up to the plate and make the investment to ensure that these children have the best chance of living a productive life.”
The three primary types of ASD are autistic disorder, Asperger’s disorder and pervasive developmental disorder not otherwise specified. Although the severity of the disorders varies, children with any form of ASD commonly exhibit social impairment, communication delays and repetitive behaviors or restricted interests. Receiving adequate intervention services in the private sector can cost families tens of thousands of dollars. Wang notes that many families relocate to different EI districts, depending on where the best-resourced EI programs can be found.
The study also found that 94 percent of respondents (49 states or territories) reported that they have shortages of providers, who are crucial for providing services to children with ASD. Most states reported an increase in demand for ASD-related evaluations (65 percent) and services (58 percent) since 2007, the year of the AAP’s expanded screening recommendations. In addition, EI programs in states with a higher percentage of Black and Latino children were more likely to have provider shortages.
More information on autism spectrum disorder may be found at www.nichd.nih.gov/health/topics/asd.cfm.
More information on early intervention programs may be found at www.ccde.org/EarlyIntervention.php.
The Robert Wood Johnson Foundation Physician Faculty Scholars program strengthens the leadership and academic productivity of junior medical school faculty dedicated to improving health and health care. Under the program, scholars receive funds to support a research project, receive national and local mentorship and work with other talented scholars. For an overview of RWJF scholar and fellow opportunities, visit RWJFLeaders.org.
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