Adapting and Testing a Novel Method of Engagement in Research: Centering Autistic Perspectives in Behavioral Intervention Discussions

Summary

The Centering Autistic Perspectives for Behavioral Interventions Discussions (CAPBID) PCORI Science of Engagement Award will examine different community engagement approaches for bringing together autistic people, Applied Behavioral Analysis (ABA) providers, and other members of the autism community to advance a shared equitable dialogue around research priorities for ABA-related research. One of these approaches will be based on existing transformative and restorative justice methods and frameworks. This project also utilizes a community-driven participatory research approach that will center autistic leadership in all aspects of the project. The investigators hope that this research will pave the way for creating spaces where autistic people are heard in their experiences and can collaborate effectively with open-minded ABA providers about how to advance the next generation of care and research in the field. More broadly, the investigators aim to create engagement approaches that may be used to have conversations around critical and difficult issues faced by the autistic and autism communities, as well as other marginalized communities.

Description

Eligibility

Age range

18+ years

Sex

All

Healthy volunteers

Yes

Interventions

• Behavioral
  Transformative and Restorative Engagement Circle (TREC)

  TREC will be co-developed in Phase 1, to focus on ensuring the presence of at least 3 key components: 1) a listening phase (focused on unconditionally hearing the experiences of autistic participants), 2) an acknowledgement phase (in which the experiences, including but not limited to harms and trauma, of autistic participants will be expressly addressed and acknowledged), 3) a negotiation/priority-setting phase, in which participants will collaboratively identify goals for future CER.

• Behavioral
  Stakeholder Engagement in quEstion Development and prioritization (SEED)

  The SEED Method is a PCORI-supported multilevel stakeholder engagement model, using a participatory framework to develop stakeholder priorities. The core premise of SEED is creating a level playing field for stakeholders, wherein participants learn how to collaboratively identify their own community's priorities, and then refine them together. It involves convening participatory Topic Groups of stakeholders, assembled based on their experience and knowledge of the area of focus (in this case, autism and ABA). It also involves additional consultative stakeholder participants to fill in key gaps in representation; this element may or may not be present in thi SEED iteration, based on the CAC-led adaptation. SEED participants convene over a period of time (adapted to the needs of the specific group, and will be matched to the length of TREC here) to conceptualize (i.e., learn how to build a conceptual model and conduct exercises to do so), generate questions (i.e., review the conceptual m

Location