Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders

• Published in: Journal of autism and developmental disorders Vol. 46; no. 5; pp. 1793 - 1805
• Main Authors: Haas, Kaaren, Costley, Debra, Falkmer, Marita, Richdale, Amanda, Sofronoff, Kate, Falkmer, Torbjörn
• Format: Journal Article
• Language: English
• Published: New York Springer US 01.05.2016; Springer; Springer Nature B.V
• Subjects: Adult; Adults; Altruism; Asperger syndrome; Autism; Autism Spectrum Disorder - psychology; Autism Spectrum Disorders; Autistic children; Behavioral Science and Psychology; Biomedical Research - methods; Care and treatment; Caregivers; Child and School Psychology; Community Involvement; Complications and side effects; Disability; Female; Health aspects; Humans; Incentive; Influences; Intellectual disabilities; Intellectual Disability; Learning disabilities; Longitudinal Studies; Male; Mixed Methods Research; Motivation; Neurosciences; Occupational Therapy; Original Paper; Participant Characteristics; Participation; Patient Selection; Pediatrics; Performance Factors; Personality Traits; Pervasive Developmental Disorders; Psychology; Public Health; Recruitment; Research Design; Research participation; Research recruitment; Research Subjects - psychology; Researchers; Resistance (Psychology); School Holding Power; Validity; Australia; New York; United States > US; Incentive; Research participation; Autism; Asperger syndrome; Research recruitment; Motivation; Longitudinal studies
• ISSN: 0162-3257; 1573-3432; 1573-3432
• DOI: 10.1007/s10803-016-2708-6

Recruiting adults with autism spectrum disorders (ASD) into research poses particular difficulties; longitudinal studies face additional challenges. This paper reports on a mixed methods study to identify factors influencing the participation in longitudinal autism research of adults with ASD, including those with an intellectual disability, and their carers. Common and differentiating factors influencing the research participation of participants are identified and discussed. Factors influencing participation were found to differ both between and within participant categories. We propose a dichotomy whereby factors influencing research participation can be classified as those arising from a participant’s values, which act as either a motivator or a deterrent; and those based on convenience, which act as either an enabler or inhibitor. These findings are applicable to research studies that seek to recruit adults with ASD as participants.