Demographic, Diagnostic, and Clinical Characteristics of Adult Participants in the SPARK ASD Cohort
It is well recognized that there is a dearth of research on adults with Autism Spectrum Disorders (ASD) in the United States1. The absence of research not only impedes our ability to understand causes of ASD2, but also limits the development of adequate supports and services for the adult ASD community3. Due to the heterogeneity of ASD, large numbers of individuals are needed in research, including adults for whom challenges differ4.
The aim of the current study is to summarize the characteristics of adults with ASD in the SPARK cohort.
From December 2015 through October 1, 2017, ASD adults enrolled online at sparkforautism.org, completed brief medical history and demographic surveys. Adults included dependents enrolled by their legal guardians and independent adults, many of whom are parents themselves. Data analyses, including measures of central tendency (means) and proportions, were performed using Stata, version 12.0.
During the study period, SPARK enrolled a total of 2,787 adults, of whom 1,654 were registered by a legal guardian and 1,133 are legally independent. Almost 80% of the registered dependent adults are male, as compared to 54% of the independent adults. The mean age at diagnosis was 6 years (SD 5.3) for dependent adults and 20.5 years (SD 16.8) for independent adults. Twenty-four (24) and 19 percent of dependent and independent adults, respectively, have neurological conditions; 11% of dependent adults reported seizure disorder or epilepsy as compared to 4% of independent adults. With regard to psychiatric and developmental conditions, 52% of dependent adults and 70% of independent adults, respectively, reported having anxiety disorder, obsessive-compulsive disorder or mood disorders including depression. Sixty-three percent of dependent adults as compared to 15% of independent adults reported having developmental, language or learning disorder. Ninety-one (91) percent of dependent adults as compared to 42% of independent adults reported having IEPs for autism services; 88% of dependent adults versus 54% of independent adults reported using ASD therapies.
Data collected from adult participants in SPARK indicate a high frequency of psychiatric co-morbidities in both dependent and independent adults, particularly mood and anxiety disorders. Although dependent adults are expected to have more severe challenges, independent adults showed a similar, high rate of co-morbid neurological disorders. At the same time, far fewer independent adults received proper diagnosis or services for ASD in their childhood3. Ultimately, these findings underscore the importance of continued, longitudinal research in adults with ASD as a way of better understanding the life course of the condition and to develop better services and systems of support.