What Factors Have Been the Most Helpful and Harmful and When? Identifying Key Impacts on Psychosocial Development According to Autistic Adults and Caregivers.

Abstract

Few studies have asked autistic adults and caregivers directly about what has most positively and negatively impacted their lives. This study sought to: (a) identify positive and negative factors experienced by autistic adults and caregivers; (b) test for within-subject differences in endorsement of promotive factors reported specific to four stages of development; and (c) test for differences in factors between adults with varying cognitive ability (i.e., less cognitively able [LCA; verbal IQ < 70] and more cognitively able [MCA; verbal IQ ≥ 70]). Participants included 91 autistic adults and caregivers. Autistic adults' VIQs ranged from 4 to 139. Participants completed a modified version of the Social/Emotional Functioning Interview which consists of open-ended questions about positive and negative factors experienced across development. Autistic adults and caregivers, regardless of cognitive abilities, frequently reported people supports as more helpful than specific services, aspects of education, or generative activities from early childhood through adulthood. For both cognitive groups, generative activities were increasingly important after childhood. Services were more frequently identified as helpful by LCA caregivers in adulthood, while education was reported more by MCA caregivers and autistic adults. Differences by cognitive ability in negative factors included that more LCA caregivers reported poorly prepared professionals/caregivers as disruptive, while more MCA caregivers and autistic adults reported family conflict and bullying. Positive and negative factors identified through interviews of lived experiences can inform targeted care based on strengths and needs across cognitive abilities and life stages.