Autistic Adults’ Priorities for Social Media and Mental Health Research: A Coproduced Delphi Consensus Study

Abstract

Background: Social media has been linked to a range of harms and benefits to the mental health and well-being of users, including Autistic social media users, who—some have argued—may be particularly sensitive to both positive and negative effects of the technology. Despite this, there has been relatively little research into the links between social media and mental health in Autistic people, and even less is known about the research priorities of Autistic people themselves.

Methods: We conducted a three-wave Delphi study to identify Autistic adults’ priorities for research into social media and mental health. We also sought to explore community perspectives on ways to undertake research that maximizes impact, relevance, and reach, using thematic analysis of free-text survey responses.

Results: Twenty-one participants completed all 3 stages and identified 29 research priorities (out of 131 initially generated) that reached high levels of endorsement and consensus. While there was some interest in the potential harms of social media, overall, participants prioritized strengths/benefits-focused research. Specifically, there was interest in understanding how social media might be used to connect people—to reliable information, interests, hobbies, peers, and communities; its potential to facilitate self-soothing and emotional regulation as well as if/how social media might be used to reflect and cultivate a positive sense of self and identity in Autistic people. Finally, there was a strong emphasis on undertaking research that can be translated into concrete, practical benefits, including for under-represented, minoritized Autistic populations and those with intersectional identities.

Conclusions: The findings highlight the importance of prioritizing strengths-based research that reflects Autistic adults’ perspectives and investigates social media’s potential to support connection, emotional well-being, and positive identity. Ultimately, it is hoped that a focus on these priorities will translate into practical benefits, particularly for under-represented and intersectional Autistic communities.

Community Brief

Why is this an important issue?

Social media plays a central role in how people communicate, share information, and build communities. For Autistic adults, social media can offer valuable opportunities for connection and self-expression, but also brings challenges, such as the potential for misinformation and cyberbullying. Despite its growing influence, there is little research focused on how social media affects Autistic people’s well-being and even less on what Autistic adults themselves think are the most important questions to explore. Understanding these priorities is essential for guiding research that truly reflects what matters to the Autistic community.

What was the purpose of this study?

The purpose of this study was to find out what Autistic adults see as the most important research topics related to social media and mental health. The researchers also wanted to learn how future research could be designed to have the greatest impact for Autistic people.

What did the researchers do?

The researchers brought together 21 Autistic adults who took part in three rounds of surveys, with opportunities to meet and discuss their ideas with the research team and other participants. This process helped the group to share opinions, reflect on each other’s ideas, and reach agreement on what they thought were the most important research priorities.

What were the results and conclusions of the study?

The group identified 29 top research priorities. While participants mentioned possible harms of social media, they focused mainly on research about strengths and benefits. They wanted to know how social media can help Autistic people connect with reliable information, peers, hobbies, and supportive communities. They also wanted to know how social media might aid emotional regulation and self-soothing and how it can support a positive sense of identity. They particularly wanted to see research leading to practical, real-world benefits, especially for Autistic people from minoritized groups.

What is new or controversial about these findings?

This study differs from much previous research, which has mainly focused on the risks of social media for Autistic people. The findings highlight a clear desire for strengths-based research recognizing social media’s positive potential, as well as Autistic users’ capacities to shape their online experiences. It also stresses the importance of coproducing and collaborating with Autistic people directly in all stages of the research process.

What are potential weaknesses in the study?

The study included a relatively small group of participants, most of whom were White, highly educated women. This means the findings might not represent the full diversity of Autistic perspectives.

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

By centering Autistic adults’ voices this study offers valuable guidance for future research and policy. It points toward research that focuses on how Autistic social media users can harness the technology to cultivate connection, community, emotional well-being, and positive identity. Ultimately, we hope that these findings can help shape a future in which social media is a tool for empowerment rather than harm for Autistic adults.