A qualitative investigation into autistic adults’ perspectives on intervention goals for autistic children

Abstract

Behavioral intervention programs for autistic children target a variety of goals including communication, social, academic, and daily living skills. A key component of ethical interventions is social validity, the extent to which interested parties find the program goals, procedures, and outcomes acceptable. However, past research indicates that social validity is rarely assessed from the autistic point of view. Thus, while intervention goals may be acceptable from parent or clinician perspectives, little is known regarding autistic individuals’ views of these goals. In this study, autistic adults were presented with common intervention goals and asked to provide written feedback on them. Though these open-ended questions were presented as an optional survey question, each goal received open-ended feedback from 120 to 189 participants (out of a possible 214 who completed the relevant survey portions). Responses were analyzed using reflexive thematic analysis by a team of nonautistic and autistic researchers. Four themes were identified: “Autistic Way of Being & The Double Empathy Problem”; “Supporting Autonomy, Self-Advocacy, and Interdependence”; “Implementation Matters,", and “Moving Beyond Behavior.” Findings will hopefully aid providers in developing intervention goals that are aligned with the perspectives of the autistic community. Lay abstract Intervention programs for autistic children aim to help children with communication, social skills, academic tasks, and everyday behaviors and activities. A major factor in ensuring these programs are ethical is “social validity,” which means ensuring that the program goals, procedures, and outcomes are deemed acceptable by those involved. Historically, the views of autistic individuals on these interventions have been overlooked; instead, researchers have focused on the perspectives of clinicians and parents. This study used a survey with open-ended questions to explore autistic adults’ perspectives on the acceptability of common intervention goals. Our research team, which included both autistic and nonautistic members, analyzed and categorized the survey answers into four themes: “Autistic Way of Being & The Double Empathy Problem”; “Supporting Autonomy, Self-Advocacy, and Interdependence”; “Implementation Matters”; and “Moving Beyond Behavior.” Findings aim to encourage providers to develop intervention goals that align with the perspectives of the autistic community.