When Is Engagement ‘Good’? Values and Integrity in Community-Engaged Autism Research

Abstract

Community engagement (CE) in autism research has been promoted as “good practice,” and is described through approaches such as co-production, participatory action research, and community-based participatory research. Although CE can enhance relevance and trust, its potential burdens or harms are rarely examined or disclosed to community members, and it is often implemented without evaluating its processes or outcomes. Limited attention is also given to values: the axiological foundations of CE and whether engagement is conducted with integrity. This perspective introduces an axiological lens to CE in autism research by arguing that researchers’ value commitments shape not only why engagement occurs but also how it unfolds and whom it benefits. After reviewing assumptions about CE being good practice, the costs and burdens associated with CE, and the lack of axiological analysis in autism research, it is argued that evaluating both processes and outcomes is essential. It then presents an “axiology of integrity,” which positions success in CE as coherence between stated values and actual research practices. Drawing on empirical and reflective scholarship, key process and outcome dimensions for evaluating CE are presented, and a seven-step framework to help researchers articulate their axiological perspectives is shared. This perspective contributes to sparse scholarship on axiology in autism research and offers a value-driven approach for strengthening CE with and for Autistic people and communities.

Community Brief

Why is this topic important?

Including Autistic people in research is widely recognized as “good practice,” but involvement is not always done in meaningful or ethical ways. Community engagement (CE) is when researchers and community members work together (collaborate) to study problems that are important to them through collaboration, partnership, and shared decision-making, with findings shared so that work can have a meaningful impact. When CE does not have enough resources, is rushed, or is symbolic, Autistic collaborators can feel tokenized, unheard, or be harmed, without knowing this is a risk before the research starts. If research has values that guide it, it might be better able to meet the needs of Autistic people.

What is the purpose of this article?

This article proposes that values shape CE in autism research. It shares that CE is good but also has unacknowledged risks and challenges. It shares that researchers need to better understand how knowing our axiology, a way of saying values that shape research, can help make CE better, and that this can be done by evaluating processes and outcomes. It proposes that integrity (aligning values and actions) is necessary in CE research, and that this can be done by understanding our axiology.

What personal or professional perspectives do the authors bring to this topic?

I am a non-Autistic, neurodivergent researcher with lived experience as a research participant and researcher. These experiences shape my understanding of both the benefits and risks of CE and inform my commitment to improving research with and for Autistic adults.

What is already known about this topic?

CE research can improve the relevance, ethics, and trustworthiness of studies, and many organizations now encourage or require its use. However, existing research often prioritizes scientific outputs over community experiences, with limited guidance on how to evaluate whether engagement is meaningful, equitable, or supportive of Autistic well-being, or how researchers’ values (axiology) shape these processes.

What does the author recommend?

The author recommends that researchers work closely with community members and think carefully about the values guiding their work. They propose a seven-step framework that helps researchers check how engagement happens and what it leads to, including agreeing on shared values, deciding together what success looks like, making sure the work is accessible and inclusive, reviewing both the process and results, paying people fairly, sharing findings openly, and reflecting on what was learned.

How will these recommendations help Autistic adults now or in the future?

These recommendations encourage researchers to build engagement practices that center Autistic people’s needs, reduce harm, and support genuine collaboration. By focusing on integrity and accountability, this approach can lead to research that is more respectful, equitable, and beneficial for Autistic people and communities, both now and in the long term.