There are many therapies for autism, along with a significant amount of funding for research, development, and implementation of these therapies. However, it often remains unclear whether these therapies actually help autistic people. Autistic people rarely have a voice in creating and shaping these therapies, and there is very little ethical guidance for people who practice autism therapies that accounts for the needs, experiences, and perspectives of autistic people. Autistic people should have the ultimate say in what autism services focus on. ASAN’s white paper, “For Whose Benefit?: Evidence, Ethics, and Effectiveness of Autism Interventions,” aims to help close this gap.
The white paper discusses autistic peoples’ perspectives on the ethics and purpose of autism interventions. It explains the ethical problems at the heart of the most popular autism intervention, Applied Behavioral Analysis (ABA), as well as the lack of evidence to support ABA. And it examines how similar problems with both ethics and evidence can show up in other therapies. Finally, it gives initial ethical guidance on what’s helpful and harmful in autism services and research. This guidance is available in three formats: an academic version aimed at researchers, policy makers, and professionals; an Easy Read document that uses pictures and large text; and a Plain Language version without accompanying graphics.
Autistic people deserve access to high-quality, evidence-based, ethical services that work towards our goals, as defined by autistic people ourselves. “For Whose Benefit?” is intended to be a starting point to envision what those services could look like, and what ethical guardrails are needed. We hope that researchers, policy makers, and practitioners will read our report, and learn from self-advocates about the best ways to provide autism services. And we look forward to continuing this conversation as more and more self-advocates rightly take the lead in developing and shaping services for current and future generations.
Executive Summary & Ethical Guidance
This work was made possible by generous funding from ICDL and the WITH Foundation.