Growing up with Autism: What Do We Know? Where Do We Need to Go?

Background: The quantity and quality of research on autism spectrum disorder (ASD) has grown dramatically over the past few decades. Multiple workgroups have conducted systematic reviews of autism intervention research to identify effective interventions and discriminate new and promising approaches from the deceptive and improbable. The majority of autism intervention research included in these reviews, however, is focused on early intervention and early childhood development (Wong et al., 2014). In recent years, funding agencies and scholars have called for researchers to broaden their scope to address the needs of adolescents and adults with ASD (IES Request for Applications, 2014).

Objectives: The primary research aims are as follows: (1) to evaluate the extent to which the field is responding to this call of broadening research efforts to include adolescents and adults with ASD; and (2) to describe the type of research being conducted and outcomes of interest.

Methods: We conducted a systematic scoping review of empirical research published between 2008-2017 that included at least one individual with ASD age 12 or older. The research team created a protocol that detailed study inclusion criteria, search terms, and appropriate library search databases. Studies were initially screened for inclusion based on a title and abstract review; studies that met eligibility were then subjected to full-text review. The following variables were extracted for each included study: date of publication; study type (e.g., intervention; descriptive); participant ages; primary intervention outcome/study variables.

Results: We will present our results in adherence with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). The initial search revealed 2182 studies. Approximately 25% of these studies (n = 529) met criteria to be included in the review. Descriptive analysis of publication dates shows a consistent increase in the number of published empirical studies from 2008 to 2017 that include adolescents or adults with ASD. A total of 27 studies published in 2008 met inclusion criteria compared to 122 studies in 2017. Data on the nature and type of studies is forthcoming.

Conclusions: Our data suggest that the field is responding to the need to broaden research efforts to include adolescents and adults with ASD. The intent of this scoping review was to provide a broad overview of the current state of our empirical knowledge for this population. These findings may inform researchers as to specific areas of need that remain under addressed in the current body of literature. It is important to note that we evaluated these studies primarily for content. Evaluation of methodological quality of studies was beyond the scope of the current review but will be needed if the goal is to identify specific evidence-based practices for this population. This review should be viewed as a launching point for follow up meta-analytic studies in which researchers attend to methodological rigor as part of their evaluation process.