Growing interest in autism spectrum disorder (ASD) research requires increasingly large samples to uncover epidemiologic trends; such a large dataset is available in a national, web-based autism registry, the Interactive Autism Network (IAN). The objective of this study was to verify parent-report of professional ASD diagnosis to the registry's database via a medical record review on a sample of IAN Research participants. Sixty-one percent of families agreed to participate; 98% (n = 116) of whom provided documentation verifying a professionally diagnosed ASD. Results of this study suggest that information collected from parents participating in IAN Research is valid, participants can be authenticated, and that scientists can both confidently use IAN data and recruit participants for autism research.
Response to joint attention (RJA) is impaired in preschoolers with autism spectrum disorder (ASD) and is pivotal to social and communication development. Response to joint attention was examined at 14 and 24 months in 51 children at high risk for autism (siblings of children with autism). Outcome groups at age 3 years included ASD (n = 16), broader autism phenotype (n = 8), and non-broader autism phenotype (n = 27). The ASD group made minimal improvement in RJA between 14 and 24 months, but stability of RJA across tasks increased for all three groups. Significantly, lower RJA was observed for the ASD group at 24 months. Response to joint attention performance at 14 months predicted ASD outcome. Response to joint attention is an important screening and early intervention target.
Patterns of current psychotropic medication use among 5,181 children with autism spectrum disorders (ASD) enrolled in a Web-based registry were examined. Overall, 35% used at least one psychotropic medication, most commonly stimulants, neuroleptics, and/or antidepressants. Those who were uninsured or exclusively privately insured were less likely to use >or=3 medications than were those insured by Medicaid. Psychiatrists and neurologists prescribed the majority of psychotropic medications. In multivariate analysis, older age, presence of intellectual disability or psychiatric comorbidity, and residing in a poorer county or in the South or Midwest regions of the United States increased the odds of psychotropic medication use. Factors external to clinical presentation likely affect odds of psychotropic medication use among children with ASD.
Using online survey data from a large sample of adults with autism spectrum disorder (ASD) and legal guardians, we first report outcomes across a variety of contexts for participants with a wide range of functioning, and second, summarize these stakeholders' priorities for future research. The sample included n=255 self-reporting adults with ASD aged 18-71 years (M=38.5, SD=13.1), and n=143 adults with ASD aged 18-58 years (M=25.0, SD=8.2) whose information was provided by legal guardians. Although the self-reporting subsample had much higher rates of employment, marriage/partnership, and independent living than are typically seen in ASD outcome studies, they remained underemployed and had strikingly high rates of comorbid disorders. Data on both descriptive outcomes and rated priorities converged across subsamples to indicate the need for more adult research on life skills, treatments, co-occurring conditions, and vocational and educational opportunities. Stakeholders also placed priority on improving public services, health care access, and above all, public acceptance of adults with ASD. Findings must be interpreted in light of the self-reporting subsample's significant proportion of females and of later-diagnosed individuals. This study underscores the need for lifespan research; initiatives will benefit from incorporating information from the unique perspectives of adults with ASD and their families.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.