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In recent years, public discussions about autism, autism research, and individuals with autism have revealed a wide range of views, at times becoming contentious. Autism researchers at the ӳ����ý of MIT and Harvard noticed that the discourse lacked a forum for people to openly and thoughtfully share and hear all points of view in a way that might be helpful to the autism community.

In 2023, members of the NeuroDevelopmental Variability (NDV) Initiative at the ӳ����ý and the Autism Science Foundation launched a global effort called Healthy Engagement in Autism Research Dialogue (HEARD). The effort aims to bring together autistic people, caregivers and family members, clinicians, researchers, bioethicists, and policy makers to improve communication around these issues, and to alleviate tension and establish trust between members of the autism community. HEARD has held monthly discussion sessions with about 25 people from around the world, covering a variety of topics such as genetics research and the language used to describe autism.

To learn more, we spoke with HEARD organizers Celia van der Merwe, research director with the NDV Initiative and a scientist in the lab of Elise Robinson at the ӳ����ý, and Alycia Halladay, chief science officer with the . We also spoke with HEARD participant Jenny Mai Phan, a research assistant professor in the Department of Bioengineering at George Mason University and assistant director of community engagement at the Center for Advancing Systems Science & Bioengineering Innovation. Phan is autistic and has four children, two of whom are autistic, and she studies factors that impact mental health and executive functioning outcomes in adolescents with autism.

How did the HEARD effort get started?

Halladay: Elise Robinson and I both wanted to do something about the level of vitriol on both sides of the online discussions. We wanted to gather the voices of scientists, self-advocates, and community members and have some structured discussions that were respectful, so that we could address some of these issues in a way that was scientifically valid. Elise connected me with Celia, who has been a great collaborator and thinker and who knows a lot about the community, and we invited Jenny to help us develop HEARD, to moderate discussions, and to present her own research.

Phan: I’m one of the newer perspectives entering into this conversation. I am a mom, first and foremost, to four beautiful children. Two of my children are autistic and I myself am a late-diagnosed autistic woman, and eight years ago I shifted my own research to focus on the autistic population. I serve with Alycia on a federal advisory committee for autism research and we both hope to make progress in this space, but it is difficult to do so with such heavy online discourse that leans negative.

As a parent, I’d done work in advocacy because of the disparities we’d seen personally and heard from other parents in support groups — for example, some families face long waiting times for evaluation and diagnosis, which prevents them from seeking helpful therapies and services. So I came to HEARD as both an advocate and a researcher, not only to share my opinions but also to learn from others.

What are the goals of this effort?

van der Merwe: One of our aims is to have discussions around sensitive topics in autism and to really just build trust between researchers and the community. For families with children with autism, mistrust can build when they aren’t informed of research until it’s done and published, or when they aren’t considered during the study design. We want to make sure these community members are being listened to and able to give advice from the get-go. And on the flip side, researchers working with data aren’t often able to connect with the participants who contributed the data. To address these gaps, we invite researchers to speak to community members and explain their work, and also hear back from the autism community about how the community might be affected by the research and how to help grow their scientific understanding.

A second aim is to develop a template for how other research groups can have discussions around any kind of sensitive topic. Sharing perspectives on these autism-related issues is great, but we also hope to give something back to the scientific community that is informed by what we did, what worked, and what didn’t. We’re also aiming to be as representative of the community as we can be. There are so many different voices and we want to try and include all of them, without growing too large, so that we can be effective and hear everyone.

What have you achieved so far with HEARD?

van der Merwe: In our first year, we held a series of monthly discussions on different aspects of the role of genetics in autism research, ranging from common and rare genetic influences to the language used in research. Each meeting had either a predetermined topic for discussion or a guest speaker, always rooted in science. We’ve learned that it’s helpful to always have a designated moderator, and that starting with a 15-minute scientific primer is useful. In addition to our steering committee, which is myself, Alycia, and Rachel Asher at the ӳ����ý, we’ve built a group of 25 or so members from around the globe who share HEARD’s mission. We specifically invited individuals who aren’t as well known or represented on social media, so that they could share their opinions as well.

Halladay: We also wanted to include people who have perspectives that not all of us totally agree with. HEARD is unique because we're bringing people together who disagree with each other. And I have to say, as far as being able to have respectful conversations, even if we disagree, I think we've been hugely successful.

Phan: I also see progress because it's not just people in the United States. We have attendees from all over the world who are engaging in this conversation, which is not something I've seen before.

What kinds of issues do you raise during your discussions?

Phan: One topic we’ve discussed in HEARD is the role of language. For instance, some prefer “person-first” language (“a person with autism”) while others choose “identity-first” language (“an autistic person”). But I saw that even people who have been doing autism research for a very long time held different opinions about it, especially from a global perspective, and there’s still no consensus. I’ve personally landed somewhere in the middle, using both languages along with footnotes and disclaimers.

Halladay: Regarding the use of words like “risk,” “cure,” and “patient,” we in HEARD have landed the same way the field has landed — not everyone is going to see these things the same way.

van der Merwe: It’s tricky to come to a single solution. But speaking about these issues is important — just knowing about them and making sure researchers are aware of these concerns in the autism community. It would be great if HEARD one day has an impact on how research is done or contributes to supports for families, but in the meantime, just letting people know that we’re having these difficult discussions is important.

What’s on the horizon for HEARD?

van der Merwe: We’re continuing to have group discussions on topics such as the use of animal models in autism research, in addition to sharing more about how these issues impact the global research community. HEARD is still somewhat researcher-heavy, and many of our members who do have autism or have children with autism are also scientists, so this year we’ll focus on inviting more people who aren't autism researchers. We’re also planning to put together a perspective piece for a scientific publication to share our experiences, and are pursuing funding for a future in-person HEARD meeting.

Halladay: We’re hoping to maintain a space for these ongoing conversations. There's more common ground than many realize, so we want to share that. At the same time, we recognize that these issues can cloud scientific progress.

Phan: Division on these issues is stunting progress towards solutions, so I think we have to pick our battles. I appreciate that HEARD is trying to shift the focus to what is important to all of us and what we can unite on.

Yes, we should continue making space for disagreements, but the longer we dwell on those, the more barriers we create to what we can accomplish as a community. So I like that HEARD is balancing both. It's not an easy challenge to take on, but I praise the HEARD team for not shying away from it.