The Views of Autistic Adults on Early Autism Interventions: A Mixed-Methods Systematic Literature Review

Abstract

For many years, early autism interventions were developed without the involvement of autistic people. This review explores the views and experiences of autistic adults regarding psychosocial/educational interventions for young autistic children. Four databases (Web of Science Core Collection, Education Resource Information Centre, Education Database and PsycINFO) were searched; 19 studies were identified. Quality appraisal was performed using the Quality Assessment with Diverse Studies tool. Qualitative data were analysed using thematic synthesis. Quantitative data were analysed using descriptive narrative synthesis, including textual description, tabulation and a visual representation. Five themes were developed among studies with qualitative data: Hear the child’s voice, Let the child be a child, Celebrate autistic lives, Understand autistic challenges and, finally, a cross-cutting theme, Damage done, on negative experiences of autistic people who underwent early interventions. In studies with quantitative data, autistic people endorsed well-being, adult support/accessibility and reducing harmful behaviours, and did not endorse outcomes related to reducing autism traits. We conclude that, according to autistic adults, early interventions should take an autism-affirmative approach, be developmentally appropriate and foster self-determination. Given that the present research included studies from varied cultures and backgrounds, further research is required to examine how individual differences influence perspectives on interventions. Lay Abstract Our study aimed to understand what earlier studies found when they asked autistic adults for their views on intervention and support for young autistic children. We were interested in the views of autistic adults whether they had taken part in early interventions or not. After searching through online records, we found 19 relevant studies. We evaluated the quality of the studies and then separated qualitative (text-based) and quantitative (number-based) data. In studies with qualitative data, we found five themes. Hear the child’s voice talks about child’s assent, Let the child be a child addresses support being play-based and fun, Celebrate autistic lives focuses on autism acceptance and Understand autistic challenges examines making society more accessible. Damage done outlines the negative experiences of autistic people who took part in early interventions. Studies with quantitative data were very different to each other, so we described their similar aspects. In four quantitative studies, autistic people rated intervention goals based on how good or important the goal is for the child. Autistic people said the best/most important goals focused on safety, child well-being and adult support. The worst/least important goals focused on changing autism characteristics such as stimming and eye contact. A graph was made to show this. We need more research on intervention practices and contexts and more research where we ask diverse autistic people: autistic parents, autistic children, men, people of colour and people with higher support needs. Researchers and practitioners can use these findings to develop and provide support that aligns with autistic people’s priorities.