The Drama and Trauma of Creating Policies on Autism

Abstract

There is considerable controversy regarding the provision of appropriate services for young children with autism and their families. A plethora of therapies have become available, most of which have uncertain efficacy. There is debate regarding which public agencies and private third-party payers have responsibility for the financing of services. There is particular controversy as to whether these therapies should be considered part of the scope of the entitlement under the Individuals with Disabilities Education Act (IDEA). This article identifies the factors that make autism a vexing public policy issue. These include an increase in the incidence and prevalence of children with autism; a lack of consensus on the etiology of the disorder; a lack of consensus on the most successful methodology for clinical intervention; coincidence of the age of diagnosis with the upper age limit of Part C of IDEA; a shift to a family-centered decision-making paradigm; and an increase in due process hearings and litigation. The authors identify concerns regarding the gradual shift to an expectation that early intervention and special education systems should include a full array of services for this population. They argue that the service delivery system should include a range of public and private agencies with a shared obligation for services to children with autism. They also propose the creation of a community-based mechanism for pooled funding of high-cost services. Autism is viewed as a metaphor for the dilemma that policymakers encounter when they attempt to fashion policies for children with special needs at a time when there is insufficient data to determine which services should be made available by public and private agencies.