Characteristics of families of young children participating in autism intervention research

Research suggests that young children with autism spectrum disorder (ASD) benefit from early, intensive behavioral interventions, most of which require active parental involvement to achieve maximal benefit. Family characteristics may affect the likelihood of children receiving early intervention and the likelihood of receiving the optimal dose. Given the impetus to scale-up promising interventions for children with ASD, we conducted a systematic review to examine the demographics of the families participating in autism research with the goal of understanding the generalizability of research findings to low-income and minority families, who experience poorer outcomes compared to their more advantaged peers. We searched Pubmed, PsycINFO and ERIC from January 2000- April 2012 using search terms related to ASD. We included studies that tested behavioral or educational interventions only. Studies were excluded if they were conducted in a non-English speaking country; number of subjects <10; child age > 8 years. Two investigators reviewed each article and extracted data on study design and sample characteristics. Thirty-six studies met inclusion criteria. Sample size ranged from 10-152. All studies reported child age; 32 reported child gender. Less commonly reported characteristics were race/ethnicity (n=20), parental education (n=13) and socioeconomic status (n=6). Of US studies (n=21), 5 (23.8%) reported > 2 family characteristics; of the studies conducted outside the US, (n=15), 3 (20%) reported > 2 family characteristics. Preliminary results suggest variability in reporting family characteristics of participants in studies of ASD interventions. Limited reporting of participant characteristics may compromise the generalizability of research findings, particularly to vulnerable populations.