Healthy Engagement in Autism Research Dialogue (HEARD)

There are currently a number of sensitive issues and concerns related to research, language usage and treatment of autistic individuals. This has led to disagreement and contention between groups within the autism community. Together with the NeuroDevelopmental Variability Initiative at the ӳ��ý and the Autism Science Foundation, we have established Healthy Engagement in Autism Research Dialogue (HEARD), a global effort to improve communication around these issues, and to alleviate tension and establish trust between members of the autism community.

Our aims are:

Engage in discussions around sensitive areas of autism research and perspectives with leading voices in the community (autistic persons, caregivers and family members, clinicians, researchers, bioethicists, policy makers)
Design and disseminate a template for successful communication strategies to be shared with the community, along with a working document and a commentary, that describes the discussion format, outcomes, failures and successes that stem from these discussions
Expand discussions to include autistic stakeholders, experts and trainees

Discussions

HEARD logo We host a diverse well-represented group of individuals from across the globe to participate in monthly virtual discussions. All participants are included in the design and moderation of the forum, and are encouraged to also provide feedback in a post discussion survey.

Our first discussion series for the 2023-2024 academic year was titled ‘The role of genetics research in autism’, and included three categories of discussion topics pertaining to the biology of autism genetics, communication of genetic findings, and the ethical implications of this field of research. The outcomes from this series will be presented in a commentary and at autism and genetic conferences.

For the 2024-2025 sessions, we have discussed the use of animal and cell models in autism research, and will host several sessions on perspectives from the global autism community. We have also piloted a workshop session, held at the conclusion of a discussion topic, to better define and cultivate healthy research ecosystems within the HEARD community.