News and Knowledge

Autism emerges early in life, typically by age 2, and the most successful interventions begin then. Pre-K settings, therefore, are a frequent site for services. Parents have two main options for their young children with ASD when they are seeking services: public or private schools via an Individualized Education Program (IEP) or private interventions outside of school. Most parents turn first to schools.

In 2012, OAR funded the first nationally representative study of access to and use of services in and out of school for young children with autism spectrum disorders (ASD), which was conducted in 2013. The principal investigator, Lucy Bilaver, Ph.D., an assistant professor at Northern Illinois University and an affiliated scholar at Chapin Hall at the University of Chicago, and her research team looked at what factors influence whether a child with autism can access critical services such as behavior therapy, speech therapy, and guidance from a psychologist or other mental health professional.

Background

The data for the study came from the Pre-Elementary Longitudinal Study (PEELS), a six-year panel study of children receiving pre-school special education services. Dr. Bilaver and her team drew and followed 3,104 children from 2003 through 2006. Of the total number of children, 250 were identified as having ASD by a teacher or parent.

The researchers selected five services as dependent variables from over 16 services reported in PEELS. The five include speech therapy, occupational therapy (including sensory integration therapy), physical therapy, behavior therapy, and mental health services.

Findings

While they did not find large disparities based on race, socioeconomic status, education or similar factors, what they did find was disturbing. Service use fell off between the ages of 3 and 6 among children with ASD. By the 2005-06 school year, for example, only 75 percent of students were receiving speech therapy, down from 90 percent three years earlier. Fewer children were attending speech therapy exclusively at school. As with speech therapy, physical and occupational therapy declined with time, and again, more students continued to seek access beyond school.

The decline in service is worrisome, as it is not fully being replaced by therapies outside of school. Indeed, the share of children receiving no services at all increased with time, from 10 percent at the outset of the study to 32 percent three years later.

In addition and to the surprise of the researchers, the study also revealed very low use of behavioral therapy for children receiving pre-school special education services. Despite being considered one of the most effective interventions for children with ASD, only about 5 percent of children in the study were receiving behavioral therapy, and even fewer (1.3 percent) were receiving such services at school.

Dr. Bilaver also found that:

• Speech therapy was the most common service, which is not surprising given that autism affects early language development and social communication. Approximately 90 percent of children received speech therapy in 2003-04, and slightly more than three-fourths of those received therapy at school.
• Mental health and social work services were also rare, with only about 10 percent of children receiving it. About three in 10 children received physical therapy, and 58 percent of children receive occupational therapy mostly at school.
• The school setting seems to be effective in reaching children with ASD regardless of income or other distinctions. For example, 90 percent of African American children with autism were receiving services in school, a rate identical to white children. There was, however, one distinction. Children whose mother had at least some college were much more likely to be receiving one of the five services both inside and outside of school. This distinction by education might belie the complexity of the system of care. Those with more education may be better able to navigate the bureaucracy and more effectively advocate on behalf of their children.

Conclusions

Schools appear to be a lifeline for parents seeking support and therapy for their children with ASD, particularly for speech and occupational therapy. However, few are finding behavioral services in schools, despite its effectiveness as a therapy. Less than 5 percent of the children in this national study were receiving behavioral therapy either in school or in other settings.

Also worrisome is the falloff in service use as children age, given the continued need, in general, among children with autism. Although this study was not designed to explore why service use declines, the complexity and lack of centralized coordination of services may be contributing to this decline, as may the limited funding and confusion among parents and providers over “what works.”

Recommendations

In her research summary, Dr. Bilaver described several possible solutions to reverse the decline in use of services as children with ASD age, including:

• Use of a “medical home” to streamline and centralize service options. Medical homes serve as centralized health care providers that focus on whole-person care, improved access to care, and work to coordinate care across all caregivers and related services, both in the community and in the health care system. Within this model, a family has only one point of entry to access to services, and a specific plan for care and treatment is designed and implemented across the variety of health care and other professionals serving the family.
• Improved communication with parents about effective interventions. Funding for school-based services is insufficient to meet the growing need, yet the Government Accountability Office (GAO) projects declining state revenue through 2060. Therefore, doing more with less, more efficiently, will be an ongoing requirement.
• Enhanced physician awareness and training. In most states, eligibility for services starts with a diagnosis from a physician or psychologist. Further, Medicaid and private insurance will not reimburse for treatment or supportive services unless provided by the licensed personnel. Yet, physicians report that they feel less competent to care for children with ASD than they were other complex medical issues.

Dr. Bilaver’s study highlights the importance of schools as service providers and the need for better access to behavioral therapy. For more information about Dr. Bilaver’s study, contact OAR at research@researchautism.org.