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, these autistic and autism communities have had limited opportunities to directly engage with basic scientists. Importantly, basic research produced by labs upstream of the clinic and patients has far-reaching implications for how scientists, policy-makers, and autistic people themselves understand autism and contributes directly to future 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.

This project builds on preliminary work by former Kavli Graduate Fellow, Juliana Chase, who joined us for the majority of 2025 as a staff member. Juliana and Lea designed, secured funding for, and hosted ACORD (Autism Communities & Research Dialogue), bringing together autistic self-advocates, caregivers of autistic individuals, and basic scientists studying autism, in facilitated dialogue to foster trust, understanding, and build towards future collaboration.

The Communities

Like many groups, the autism community is not a monolith. Instead, there are multiple divergent and intersecting populations some of which have directly opposing views. For example, caregivers (often mothers) of autistic children who may be non-speaking and require full-time one-on-one care, are desperate for treatments, even “cures,” that may alleviate their child’s suffering². They may even advocate for prenatal genetic testing as a form of prevention³. This rhetoric exists in stark contrast to an increasingly vocal autistic self-advocate community who recognize talk of “cures” and “prevention” as erasure, and see the behavioral features of autism as primarily socially-driven phenomena⁴. Both groups are advocating for more resources and research into 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, and thus may be hesitant to engage with autistic self-advocates or caregivers without clarity regarding how such interaction would benefit them. 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 exception) and have a vested interest in influencing and learning from each other.

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.

Autism Communities & Research Dialogue (ACORD)

Project Overview

The Communities

Project Development

Choosing dialogue

Identifying an unsupported need

Co-designing the workshop: pre-workshop interviews

Workshop and Ongoing Work

Structure

Evaluations & Feedback

Ongoing Work

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.