Approximately 1 in 68 children in the United States have been diagnosed with autism spectrum disorder, or ASD, a developmental disability that may cause social, communication and behavioral challenges. While medications may improve symptoms in some children, the most effective interventions are therapy-based and include speech and language, sensory integration, social skill training and behavior intervention or modification.
To get the most benefit from autism services, Katharine Zuckerman, M.D., M.P.H., suggests families access therapies offered at school as well as in the health care setting.
In the school-based setting, autism support or treatment? services are offered free of charge through the Individuals with Disabilities Education Act. While effective, federal and state budgets may create restrictions to available services. Likewise, limitations in the noneducational, or health care, setting are prominent, particularly in relation to insurance barriers and restrictions. Given these challenges, “access to the full range of available care for parents of patients with autism spectrum disorder is complicated; thus, the unmet need for these services tends to be quite high,” said Zuckerman, an associate professor of pediatrics, OHSU Doernbecher Children’s Hospital, OHSU School of Medicine
To better understand the issues families encounter in accessing autism care, Zuckerman and a team of researchers conducted a secondary analysis of data presented in the CDC’s 2011 Survey of Pathways to Diagnosis and Services, a nationally representative survey of parents of children with ASD intended to obtain insight into condition symptoms, diagnoses and treatment utilization. The analysis aimed to determine the relationship between parent-reported severity of ASD symptoms and the utilization of available resources.
Their review suggests higher severity of ASD symptoms was associated with more service use across non-school and school-based settings. “This was not surprising,” said Zuckerman. “However, we also found a significant variability in service use across the range of severity, which unfortunately suggests that many kids across the autism spectrum likely aren’t receiving all of the therapy services that they could use.”
Specifically, 17 percent of children with ASD weren’t using any of the services asked about in the survey, such as occupational, or speech and language therapy. Further, approximately 30 percent weren’t seeking any medical specialists on a regular basis.
“When looking only at the mild end of the autism spectrum, the rates were even higher with approximately 25 percent of children not using any of the therapies asked about in the survey. Fifty percent of the children with severe autism were using school-based services only. Another 50 percent who had severe autism symptoms weren’t using any behavioral interventions, which have the highest evidence-based results for ASD,” Zuckerman explained. The research team also concluded that 1 in 10 kids with severe autism were not seeing medical specialists at all.
According to Zuckerman, these findings should serve as a wake-up call to health care professionals: Health care and service access needs to improve and researchers must find more evidence-based ways to help.
“Health care providers also need to think about service access when they are talking to families of kids with ASD and not assume that families know what services they can and should use, and how they access them,” said Zuckerman.
This study, “Parent-reported severity and health/educational service use among U.S. children with autism,” is published online in the Journal of Developmental & Behavioral Pediatrics.
This research was funded by were funded by the National Institute of Mental Health, a component of the National Institutes of Health (award number K23MH095828).