Joseph P. Morrissey, Ph.D., Principal Investigator
Kathleen Thomas, Ph.D., Co-Investigator
Alan R. Ellis, MSW, Project Analyst
Autism lags behind the larger mental health field with regard to research on interventions and service systems. As a result, there are few evidence-based practices for autism and little research establishing interconnections between community context, services, and outcomes of the order envisioned in the NIMH’s “Bridging Science and Service” report. We believe that the state of practice in autism can be advanced by bringing it under the umbrella and methods of mental health services research. Services research calls for a broad-based and coordinated effort to develop interventions that improve the functioning of autistic individuals and their families, promote the diffusion of evidence-based best practices, and enhance consumer access to these services. This 4-year study, 2002-2006, funded by the National Institute of Mental Health, and carried out in conjunction with Division TEACCH at the University of North Carolina, seeks to develop a services research approach to understanding the structure, utilization, and expenditures for the care and treatment of autism.
A community sample of families with a child with autism, aged 8 years or younger, living in North Carolina was recruited through a two-pronged approach. Two thirds of the sample was obtained through the Neurodevelopmental Disorders Research Center Subject Registry, University of North Carolina at Chapel Hill and one-third through direct recruitment to all elementary school principals and directors of exceptional children’s divisions, TEACCH Regional Centers, and state Children’s Developmental Services Agencies within North Carolina. A combined telephone and self-administered survey was completed by 301 families during the winter of 2003-4. The survey assessed demographics, access, utilization, payers and satisfaction.
Findings underscore the need for family-level interventions to reduce barriers to care. Analysis of the major treatment approaches to care for autism and associated autism services use by families with a child with autism indicate that 66% of families used one or more approach to care and there was a significant (a<0.05) association between approach and the pattern of service use. There appears to be a distinctive set of services associated with each approach to care, but with overlap between them. Analysis of access to a wide range of autism services indicate that access to care is limited for minority children and those whose families are not using a formal approach to care. When parents reported having more ability or opportunity to advocate or needs of their own, children were more likely to use services. Analysis of family and child characteristics that affect their use of effective elements of programs for the care and treatment of ASD (early intervention, service intensity, and family involvement in the provision of treatment services) suggest some important barriers to care. Children with Asperger’s are more likely to receive their ASD diagnosis at a later age. Minority children and those whose families are not following one of the major treatment approaches to care for ASD fall behind others in the receipt of the three elements of effective care studied here. Findings also underscore the extensive amount of time families devote to their child with autism in the provision of treatment interventions.
Future analyses will address use of medications and supplements, school-based services, and family out-of-pocket costs for care.