Insights derived from basic research are generally far upstream from clinical applications. Thus, it makes sense, in some respects, that scientists studying mouse models and molecular mechanisms tied to autism may feel removed from autistic people and their communities.
But this distance can be frustrating. How do we know that our research priorities align with what people need? And how can we ensure our work is correctly interpreted? The latter question has gained urgency in recent years: Basic science informs how people think about and define autism and is increasingly invoked in debates over complex, sometimes controversial topics, including the concept of profound autism and high-profile discussions of autism’s causes.
Two of us (Juliana Chase and Hannah R. Monday), have a background in basic neuroscience—studying autism, specifically. For years, we have been discussing the ways in which basic neuroscience can feel siloed from communities with lived experience. Those conversations are part of what sparked an idea that Chase developed into the Autism Communities and Research Dialogue (ACORD) workshop in collaboration with Lea Witkowsky, executive director of the Kavli Center for Ethics, Science, and the Public at the University of California, Berkeley.
This in-person workshop, which convened in October 2025, brought together basic scientists who use animal models, including Monday, along with autistic self-advocates and caregivers of people with syndromic autism. Our 15 participants, 5 from each group, had little experience engaging with one another or navigating these conversations, and our goal was to create an opportunity for dialogue in which all involved would become better equipped to handle disagreement, mistrust and unequal power. The hope was that through dialogue and building understanding, community members and basic autism researchers would also build ties that introduce community perspectives into basic autism research.
As we will detail in a forthcoming peer-reviewed article, we discovered our participants held nuanced views, questions and values. Within each group, not everyone agreed with one another, and across groups participants found many points of consensus—a pleasant surprise for us, given the attention in recent years to tensions between autism researchers, autistic people, their caregivers and surrounding communities.
For our basic-scientist participants, ACORD was an uncommon opportunity to share insights and ask questions of the people who are ultimately most invested in autism research. Many scientists left the meeting with new ideas for their research and for communicating their work to broader audiences and relevant stakeholders. Some participants formed new cross-group collaborations, including one that is developing a manuscript together.
Reflecting on the success of this workshop, we want to share a few key lessons learned, to encourage other scientists and potential organizers to follow in our tracks.
Find the right partners.
This work requires protected and dedicated time, relevant training in community engagement and a strong understanding of power dynamics, ideally alongside embedded expertise in one of the communities or fields involved. The Kavli Center for Ethics, Science, and the Public was an ideal match: The center is experienced in public engagement and understanding science through ethical, policy, social-scientific and historical perspectives, with expertise in facilitation, ethics and public engagement.
Working together, we secured a skilled outside facilitator, which for this kind of workshop should be someone with experience guiding difficult conversations. This kind of project also requires funding, for which we partnered with a patient advocacy group, CURE SYNGAP1.
Most of the work happens before the workshop.
This work should be understood as reciprocal. Long before asking people to participate in ACORD, Chase spent time showing up in autistic spaces, having conversations and reading and learning from a range of perspectives. This informed our decision to first meet with each participant for an hour-long, pre-workshop interview to discuss their history and experiences, hesitations they might have about ACORD and what they hoped to learn from others. We then built the workshop around what we had heard, sometimes adapting our approach significantly.
For example, although we originally chose not to have scientist presentations because of the power dynamic it would introduce, each caregiver and self-advocate expressed curiosity to hear from the scientists directly. It was also through the pre-workshop interviews that we landed on two major topics we used for small-group discussions: autism definitions and language, and priorities in basic autism research. During the workshop, participants were eager to listen openly and participate fully. To us, this readiness spoke to the importance of laying the groundwork prior to the meeting.
Think about language and translation.
Some of the greatest friction arose not from fixed disagreement but from differences in lived experience and language. Terms used by researchers and caregivers did not always feel accessible or appropriate to self-advocates. And even within groups, meanings could diverge; in one discussion, self-advocates disagreed about whether autism should be understood as a disability.
For scientists, these moments were a reminder that precision matters. Rather than referencing “mouse models of autism,” researchers should name the specific neurodevelopmental syndrome the animals are modeling. Build in time and tools for translation, and make sure small-group discussions are also facilitated—or that participants have a way to report back when difficult moments arise.
Reward curiosity over debate.
Overall, participants didn’t represent rigid “sides,” but it was still important to create a structure that encouraged curiosity over defensiveness. We did this by noticing and reinforcing behavior in real-time that signaled openness to difference and a willingness to shift perspective.
For example, when a senior scientist received criticism from a self-advocate over word choice used while explaining research, the scientist responded with genuine appreciation for the correction. That response presented a template for fellow scientists and opened the door for bidirectional dialogue.
One thing we would do differently: Plan for continuity from the beginning.
It was difficult to schedule an in-person weekend workshop that would take up the majority of the day. But once in the workshop, our participants were reluctant to finish discussions and were eager to have more time together and to attend similar meetings. If we organized another workshop, we would build in an optional follow-up meeting from the outset to signal an ongoing dialogue rather than a one-time event.
Start with listening, and build from there.
Not every researcher is in a position to organize a workshop like ACORD, and a poorly designed effort may be worse than none at all. But listening should be the starting point for any effort, whatever form it eventually takes. This means connecting with existing self-advocacy or caregiver groups, attending community events, reading widely across autistic and autism-community perspectives, including caregiver blogs, Autistic Self Advocacy Network commentaries, and studies of how autistic people understand research priorities. Learn from and support the work that communities have already built.
