Centering Autistic Perspectives in Behavioral Intervention Discussions

NCT07165522 | Not Yet Recruiting DMC

• 1 other identifier: 2507011294
• Study Type: interventional
• Target: 200
• Locations: 1 country
• Sites: 1

Brief 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.

Conditions

Autism

Keywords

Autism; Applied Behavior Analysis; ABA; Community Based Participatory Research; Transformative and Restorative Justice; Engagement

Outcome Measures

Primary Outcomes (3)

• Brief Engagement Poll

  3-item poll indicating perceived quality ("ability to engage you as a member of our team in the meeting"), value ("Was today's meeting a good use of your time"), and contribution ("To what extent did you contribute to project-related processes") to the process, developed for autistic research partnerships by AASET

  Up to one day after the start of the intervention (engagement approach) delivery and up to 24 hours after completion of the intervention (engagement approach) delivery

• ABX Stakeholder Toolkit

  Likert-type measure, with items including, "The study values the differences of contributing stakeholders," "I feel the study team has a clear understanding of stakeholders' expertise, strengths, and roles," "study stakeholders engage in open communication and demonstrate a willingness to listen to others," "My fellow stakeholder participants respect what I have to say, even when they do not agree with me." (post-engagement trust) "Participating in these activities has helped me better understand research on \[this topic\]," (sense of agency) "Individuals whose lives are most impacted by \[this topic\] are well represented," "I have decision-making authority and believe I contribute meaningfully to relevant outcomes and objectives for the study," "I feel that I have been compensated appropriately for my time and expertise as a stakeholder," "I have learned a lot from participating in these activities," "I feel I could explain the ABX study to others." (sense of buy-in)

  At baseline, up to one day after the start of the intervention (engagement approach) delivery and up to 24 hours after the completion of the intervention (engagement approach) delivery

• Genetic Alliance Engagement Assessment Tool

  Quantitative engagement metrics, including the degree to which "stakeholders report satisfaction in involvement in the research process and feel adequately informed about the project activities and results," and "Stakeholders report that the research is valuable to them and that they have contributed to setting and revising project priorities." as well as self-report items such as "A sense of partnership among team members and investigators has been established," "All team members are given equal opportunity to provide input," "Input from team members is incorporated into the decision-making process," and "There is clear communication about how input from team members is incorporated into decisions."

  At baseline, up to one day after the start of the intervention (engagement approach) delivery and up to 24 hours after the completion of the intervention (engagement approach) delivery

Secondary Outcomes (5)

• ABA Willingness Tool

  Up to 24 hours after completion of the intervention (engagement approach) delivery, up to 1-week after completion of the intervention, and up to 1-month after completion of the intervention.

• AAPS

  During screening for study enrollment and up to 1 week after completion of the intervention (engagement approach) delivery.

• AASPIRE CBPR Check In

  At baseline, up to one day after the start of the intervention (engagement approach) delivery and up to 24 hours after the completion of the intervention (engagement approach) delivery

• TREC and SEED Fidelity Tools

  Up to 24 hours after each day of intervention (engagement approach)delivery.

• Qualitative Interviews

  Up to three weeks after the completion of the intervention (engagement approach) delivery.

Study Arms (2)

Transformative and Restorative Engagement Circle (TREC)

EXPERIMENTAL

Behavioral: Transformative and Restorative Engagement Circle (TREC)

Stakeholder Engagement in quEstion Development and prioritization (SEED)

ACTIVE COMPARATOR

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

Interventions

Transformative and Restorative Engagement Circle (TREC) BEHAVIORAL

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.

Transformative and Restorative Engagement Circle (TREC)

Stakeholder Engagement in quEstion Development and prioritization (SEED) BEHAVIORAL

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

Stakeholder Engagement in quEstion Development and prioritization (SEED)

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• Adults over the age of 18
• Individuals who have had experience with Applied Behavior Analysis (ABA) at any time in their lives who is:
• An Autistic individual who experienced Applied Behavior Analysis or
• A practitioner who currently or previously was involved in the delivery of Applied Behavior Analysis
• Able to communicate fluently in English
• Individuals who do not report the endpoint values on the AAPS:
• ABA should never be used for autistic people
• ABA is the only evidence-based intervention for autism

You may not qualify if:

• Under the age of 18,
• Unable to communicate in English

Sponsors & Collaborators

• Drexel University: lead
• Patient-Centered Outcomes Research Institute: collaborator
• La Trobe University: collaborator

Study Sites (1)

AJ Drexel Autism Institute

Philadelphia, Pennsylvania, 19104, United States

Location

Related Links

• PCORI Public Summary Page for this Project

MeSH Terms

Conditions

Autistic Disorder

Condition Hierarchy (Ancestors)

Autism Spectrum Disorder; Child Development Disorders, Pervasive; Neurodevelopmental Disorders; Mental Disorders

Study Officials

• Matthew D Lerner, PhD

  Drexel University

  PRINCIPAL INVESTIGATOR

• Dena L Gassner, PhD

  Drexel University

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Matthew D Lerner, PhD

CONTACT

215-571-2181; matthew.lerner@drexel.edu

Calliana Faulk

CONTACT

215-571-3219; cf944@drexel.edu

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: RANDOMIZED
• Masking: DOUBLE
• Who Masked: INVESTIGATOR, OUTCOMES ASSESSOR
• Masking Details: Quantitative data analysts will also be masked.
• Purpose: BASIC SCIENCE
• Intervention Model: PARALLEL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Associate Professor

Study Record Dates

• First Submitted: August 21, 2025
• First Posted: September 10, 2025
• Study Start: March 15, 2026
• Primary Completion (Estimated): February 15, 2028
• Study Completion (Estimated): February 15, 2028
• Last Updated: September 10, 2025

Record last verified: 2025-09

Locations

US (1)