Encouraging Participant-Centered Autism Research: What We Know from Potential Participants

Thursday, May 14, 2015: 2:09 PM
Grand Salon (Grand America Hotel)
A. R. Marvin1, C. A. Cohen2, J. K. Law3 and P. H. Lipkin4, (1)3825 Greenspring Avenue/Painter Building 1st Floor, Kennedy Krieger Institute, Baltimore, MD, (2)Medical Informatics, Kennedy Krieger Institute, Baltimore, MD, (3)Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, MD, (4)Pediatrics/Neurology and Developmental Medicine, Kennedy Krieger Institute/Johns Hopkins School of Medicine, Baltimore, MD

Engaging individuals with ASD and their families is critical for subject recruitment; however, there has been little research into the motivators for engagement.  


The goal of the study was to understand motivations and research interests in a population of families affected by autism in order to improve the recruitment and retention process in autism research.  


An anonymous survey (two versions: (i) adults with ASD; (ii) parents of a child of any age with ASD) administered by the Interactive Autism Network, an internet-mediated autism research registry, ran 08/01/2014-08/11/2014. Links to the survey were distributed by e-mail to registry participants and community website subscribers. Links were also posted on the registry’s community website and Facebook page.


141 adults with ASD and 1,122 parents with a child with ASD completed the survey (514 parents of a young child <13 years; 347 parents of a teen aged 13-17 years; and 261 parents of an adult ≥18 years). Exclusions: non-affirmation of ASD diagnosis or indication of age-category of individual with ASD.

53% of adults and 63% of parents had previously participated in research. 98% were willing to participate in future research, depending on the nature and demands of the study.

All groups listed that a “convenient location” was a high/moderate motivator: 88% were prepared to travel 30 minutes each way; 62% one hour; 33% two hours. 21% of adults were prepared to travel more than 3 hours. All groups were prepared to spend a considerable amount of time participating: 77%≤4 hours; 37%≥8 hours.

Respondents across all groups indicated that altruism (helping others, advancing science) and receiving personalized reports were high/moderate motivators (>90%). All groups were very/somewhat likely to participate in studies about genetics (89%) and associated mental health conditions (91%), but less like to join studies that required prescription medication (31%). All groups indicated a willingness to participate in longitudinal studies. Online surveys and paper surveys were preferred to telephone surveys, especially by adults with ASD.

All parents were highly/moderately motivated to learn more about their child (94%) and were very/somewhat likely to participate in a study on the effects of autism on the family (88%). Parents of adults and teens were especially interested in research on transitioning to more independent living (90% very/somewhat likely). Parents of young children were less willing to travel and more motivated by the availability of child care for their other children while participating; they were especially motivated by research into behavioral therapies, education, and speech/language (all ≥90%).

All groups expressed that they were highly/somewhat motivation by reimbursement for time and travel (79%), but indicated less interest in actual dollar amounts or gift codes. Few were motivated by drawings for gifts (<40%). This suggests incentives should be framed in terms of reimbursement for time/travel expenses.


Research must be designed with participants in mind. Autism research requires consideration of location, convenience, research topic, methodology, and such motivators as altruism and reimbursement. Researchers should be prepared to provide individual feedback, in addition to generalized outcome reporting.