Autism Communities & Research Dialogue (ACORD)

Project Overview

Basic research into the biological underpinnings of autism receives an ever-growing proportion of total autism research funding in the United States¹. Yet, despite their increasing role in this field, basic scientists often remain siloed from opportunities to engage directly with members of autism communities. Likewise, autistic people and caregivers have had limited opportunities to engage with the scientists whose work may affect them. Although this research may take place far upstream of clinical care, it can shape how scientists, policymakers, and the public understand autism, as well as affect future research, funding, and intervention decisions. Recent federal and partisan discussions of autism origins and prevention borrow the language and evidence of basic science to lend credibility to their claims, drawing basic scientists into the public conversation whether they want to be there or not.

Drawing on her experience as a graduate researcher in basic autism science and the preliminary engagement work she undertook as a Kavli Graduate Fellow, Juliana Chase created and led ACORD (Autism Communities & Research Dialogue). The project brings together autistic self-advocates, caregivers of autistic individuals, and basic scientists studying autism in facilitated dialogue to foster trust and understanding and lay the groundwork for future collaboration.

The Communities

Like many groups, the autism community is not a monolith. Autism encompasses a wide range of experiences and support needs, and the perspectives and priorities of people connected to autism sometimes differ sharply. For example, some caregivers support autistic people who are non-speaking, have complex medical conditions, or require intensive lifelong care. They may prioritize research aimed at alleviating suffering, improving daily life, or developing treatments². They may even advocate for prenatal genetic testing as a form of prevention³. Many autistic self-advocates, meanwhile, emphasize autism as an inseparable part of their identity and recognize talk of “cures” and “prevention” as erasure, seeing the behavioral features of autism as primarily socially-driven phenomena⁴. Both groups advocate for more resources and research reflecting their own priorities, and both groups see themselves as underrepresented voices when autism-related research and policy decisions are made⁵.

Basic scientists who study autism are aware of the controversies surrounding their work, even if they exist in the abstract, but many have had little direct contact with autistic people or caregivers. They may also be uncertain about how to enter conversations in which the language, history, and aims of autism research are contested. Thus, all groups that were engaged in ACORD occupy sensitive positions both inherently and in relation to each other.

While there are additional communities associated with, and relevant to, autism, we chose the three groups described above as these groups rarely interact directly in intentional dialogue (with one notable exception⁶) and have a vested interest in influencing and learning from each other.

Workshop and Ongoing Work

Leading up to the workshop, the ACORD team spoke with autism researchers, community organizations, and prospective participants. These conversations confirmed a strong desire for greater connection among autistic self-advocates, caregivers, and basic scientists, and helped identify what participants would need to engage openly and comfortably.

ACORD was designed as a dialogue rather than a debate. The aim was not to resolve disagreements or reach consensus, but to create space for participants to understand how different experiences shape perspectives on autism and autism research. Individual pre-workshop interviews helped build trust and allowed participants to shape the agenda, accessibility practices, and guiding principles for the gathering.

The in-person workshop took place in October 2025, followed by an online discussion in December. Participants explored how autism research is prioritized, described, and communicated, including what studies of particular genes or animal models can, and cannot, tell us about autism more broadly. Scientists left with new ideas for their research and language, while participants across groups reported that their expertise was recognized and respected.

The Kavli Center and its partners are now sharing lessons from ACORD through publications, articles, and conference presentations, while exploring how this dialogue can inform future engagement between basic scientists and autism communities.

Publications and Media

How basic neuroscientists can connect with autistic people and their communities

2026

A first-of-its-kind workshop offers a template for autism researchers who want to incorporate community perspectives into their work.Read more about How basic neuroscientists can connect with autistic people and their communities

Building Bridges in Autism Neuroscience: Engaging Diverse Autistic Communities

2026

In this session, leaders from both HEARD and ACORD will discuss the neuroethical challenges that arise when brain and genetic research is conducted about, but not with, autistic people. Speaker will discuss the design of dialogue-based engagement models and the importance of a neuroethics that...Read more about Building Bridges in Autism Neuroscience: Engaging Diverse Autistic Communities

Funding & Partners


This work is funded by a gift from the SynGAP Research Fund.	The Kalvi Center worked with Be the Change consulting for this project.

We are grateful to Dr. Lawrence Fung and individuals at the BROAD Institute and Autism Science Foundation for their advising on this project.

We are also grateful to the Othering and Belonging Institute, especially Julia McKeown, for programmatic insights and for connecting us with Be the Change.

1. IACC (2024). 2019-2020 Autism Research: Portfolio Analysis Report NAC, NIH

2. Thinking Autism (2020). Blog. Autism disability: consequences of polarised debate

3. Chen et al. (2015). Clinical Genetics, 88(2), 122-8.

4. ASAN (2022). ASAN Statement on Genetic Research and Autism.

5. Ghorayshi (2025) Should the Autism Spectrum be split apart? NY Times. Opinion.

6. https://www.broadinstitute.org/neurodevelopmental-variability-initiative...