Service Use and Unmet Needs Among School-Aged Children with ASD

Background: There is limited research describing intervention services used by school-aged children with autism spectrum disorders (ASD). A variety of treatments are recommended for school-aged children (e.g. behavior modification programs, occupational therapy, social skills training) which are often delivered by multiple service systems, complicating the study of services for this age group. The few studies in this area have been inconsistent regarding the types and intensity of services these children receive. The lack of information about met and unmet needs makes it difficult to establish recommendations regarding necessary policy and practice changes to address the service needs among children with ASD.

Objectives: To identify the types of services school-aged children with ASD are receiving and assess which services school-aged children with ASD still need.

Methods: This study relies on data from the largest survey of individuals and families living with autism to date. Data for this study were gathered from the ASERT (Autism Services Education Research and Training) Collaborative Needs Assessment, funded by the Pennsylvania Bureau of Autism Services. An invitation to participate was sent to all parents and caregivers of an individual with autism who received Medicaid-funded services associated with an ASD diagnosis in 1999, 2004 or 2009. Survey questions asked about service experiences for the person with ASD.

Results: 2,651 parents and caregivers completed the survey. Children about whom the survey was completed ranged in age from 4 to 21 years. There was a wide range of services used and unmet service needs. One-to-one support in the community and case management were the most utilized services with 74% of respondents receiving these; 41% of respondents reported needing more of these services. Seventy-one percent of respondents reported using speech/language, occupational and physical therapy, yet 51% of respondents still reported unmet needs in this area. Sixty percent of parents and caregivers responded that their child was receiving social skills training, and 62% reported needing additional training. Medical services (including neurology services and medication management) and mental health counseling services were utilized by 58% and 56% of respondents respectively. Only 27% of respondents reported needing additional medical services and 44% reported needing additional counseling services. Forty-six percent of respondents reported receiving summer academic support or tutoring, but 47% responded that they needed more. Thirty-four percent of respondents reported using summer camps and 53% need more. Only 15% of parents and caregivers of school-aged children reported utilizing sexual health education services; however 57% of respondents reported this as an unmet service need.

Conclusions: School-aged children use a wide variety of services and vary in the extent to which they report needed additional services. The results of this study will inform efforts to identify which services school-aged children are utilizing and which services they still need, improve the availability of services that children need, and enable the advancement and expansion of commonly utilized services to accommodate the needs of school-aged children with ASD.