Community-Based Intervention Research for Adolescents and Young Adults with ASD Is Uneven across Designs, Diversity & Domains: A Review

Poster Presentation
Friday, May 11, 2018: 11:30 AM-1:30 PM
Hall Grote Zaal (de Doelen ICC Rotterdam)
T. M. Girolamo1 and S. F. Warren2, (1)Child Language, University of Kansas, Lawrence, KS, (2)Speech-Language-Hearing: Sciences and Disorders, University of Kansas, Lawrence, KS
Background: Little is known about community-based intervention (CBI) research on adolescents and adults with Autism Spectrum Disorders (ASD). Yet, research suggests adolescents and adults with ASD face adverse outcomes upon exiting public education. CBI may be an effective way to provide support across the life span.

Objectives: The aim of this study was to summarize the state of research on CBI for adolescents and adults with ASD, particularly with regard to: demographics of participants in CBI research, development of the literature as a whole, and domains targeted by interventions.

Methods: This study included all peer-reviewed journal articles from 1980–2015. Inclusionary criteria were: (1) an explicitly identified CBI; (2) taking place in a real world setting outside of a residential setting or school; (3) targeting one or more adolescents and/or adults, of 14 years of age or older; (4) a diagnosis of autism or demonstration of the characteristics of autism under the DSM-4 or DSM-5. This criterion includes individuals from earlier studies who did not have an ASD diagnosis, but demonstrated symptoms consistent with ASD.

ERIC, GoogleScholar, Medline, and PsycInfo searches were conducted with the following terms in all permutations: (adolescents OR adults) AND (community-based OR community based OR community OR vocational) AND (autism OR asperger) AND (treatment OR intervention OR training). Reference lists of articles were also checked. Fourteen studies were identified that met the inclusionary criteria.

Articles were evaluated using a template developed by a NIMH work group. Phase I research is formulation and systematic examination of intervention techniques. Phase II research involves protocol development and manualization. Phase III research consists of randomized controlled trials. Phase IV research is community effectiveness studies.

Results: 13 of the 14 eligible studies were Phase I studies. Of the 13 Phase I studies, 11 were single-subject designs, and 2 were pre-/post-test designs. Challenges to strong single-subject designs included: sufficient intervention duration, changes in level and trend to claim treatment effect, as well as generalization. No studies explicitly qualified as Phase II. Only one study qualified as Phase III. No studies qualified as Phase IV.

Second, most studies focused on the vocational domain. Nearly 60% had vocational goals, 20% behavioral goals, 14% social skills goals, and 7% activities of daily living goals. Interventions targeting language were wholly absent from the CBI literature.

Third, studies may lack diversity. Information on participant race/ethnicity was obtained for 85% of participants overall and for 9/14 studies. 70% of participants were Caucasian, 22% African American, 4% Asian, and 3% Hispanic. No participants were Alaska Native/Native American.

Conclusions: The literature suggests that CBI research for adolescents and adults with ASD has stagnated over the past 35 years. Most studies are Phase I studies focusing on the vocational domain. It is unclear how interventions might vary with culturally and linguistically diverse participants. The paucity of research may be tied to a lack of funding and advocacy for this age group. Future research should focus on replication, especially with diverse participants, and CBI targeting other domains, including language.

References available upon request.