Social media can give parents of autistic children a place to connect, share experiences and find support. It can also expose them to sharply conflicting guidance about language interventions and other decisions affecting their children.
One source may characterize an intervention as harmful while another presents the same approach as the best option. Polished visuals, popularity and perceived expertise can make it even harder to determine which information is credible.
A cross-disciplinary team from Michigan State University’s College of Communication Arts and Sciences is studying how parents and speech-language pathologists, or SLPs, find and evaluate information about autism and language delay on social media. Their objective is to generate the evidence needed to develop comprehensive resources that help families and clinicians evaluate online claims and make informed decisions about children’s care.
The two-year project is supported by a $426,540 grant from the National Institutes of Health.
Courtney Venker, an associate professor in the Department of Communicative Sciences and Disorders, serves as the project’s principal investigator and leads an interdisciplinary, multi-university team. Co-investigators include Dan Hiaeshutter-Rice and Mariah Wellman from MSU’s Department of Advertising and Public Relations; Emily Jensen from MSU’s Department of Communicative Sciences and Disorders; and Janine Mathée-Scott from Marquette University.
Together, the researchers bring expertise in autism and language development, health communication, qualitative and quantitative research and computational social media analysis.
Why online credibility matters
The researchers are not approaching social media as entirely harmful. Online communities can give parents opportunities to connect with others who share their experiences, learn about available services and find social support.
However, inaccurate, incomplete or commercially influenced content can make it difficult for parents and SLPs to determine which sources are credible, potentially shaping decisions about whether to seek services and which language interventions to pursue.
Venker said the project is designed to help parents and SLPs benefit from the information, connection and support available through social media while reducing the potential harm caused by inaccurate or misleading content.
Wellman, an assistant professor in the Department of Advertising and Public Relations, studies how social media influencers and digital wellness communities establish authority with audiences. She said people’s trust in online information may be influenced by a creator’s perceived expertise and integrity, the content’s visual presentation and whether users identify with or aspire to be like the person sharing it.
“The expert who is the most professional is not always going to go viral on Instagram Reels,” Wellman said.
Understanding what families encounter online
The team will combine insights from parents and SLPs with an analysis of autism-related conversations on Facebook, Instagram and Reddit. Participants will share content they have found helpful or concerning and explain how they decide whether online information is credible.
Researchers will also examine millions of posts and comments to identify the topics and interventions attracting attention, how conversations differ across platforms and how they change over time.
“By combining interviews, surveys and social media data, we can build a stronger picture of what these individuals are seeing,” said Hiaeshutter-Rice, an associate professor in the Department of Advertising and Public Relations who will lead the project’s social media data collection and analysis.
Connecting people’s experiences with the broader online conversation will help the team identify where families and clinicians may need more support.
Research shaped in partnership with the community
The researchers are conducting the study in partnership with a Community Advisory Board that includes autistic adults, parents of autistic children and SLPs. Their perspectives will help ensure the research reflects the experiences and priorities of the people it is intended to support.
“You truly can’t have a perspective that you don’t have,” Wellman said. “If we’re going to be communicating to and with these communities from a research perspective, we should also include them from the very beginning.”
Reed Senter, a speech-language pathologist and member of the Community Advisory Board, sees families, clinicians and educators turn to social media for information about autism.
“Some of that information is accurate, but there’s plenty of inaccurate and misleading content, too, and it can be hard to know who to trust and what to believe,” Senter said. “Hopefully, by learning about how people consume autism-related social media, we can help them discern the high-quality information from the low-quality content.”
For Senter, the board’s involvement also demonstrates the researchers’ commitment to understanding the perspectives of those affected by the issues being studied.
The team’s findings could provide the foundation for resources that help parents and clinicians evaluate autism and language information online. That could include preparing SLPs to help families assess conflicting claims while making decisions about their children’s care.
By Claire Dippel