Centering Autistic Perspectives in Behavioral Intervention Discussions

NCT ID: NCT07165522

Last Updated: 2025-09-10

Basic Information

• Recruitment Status: NOT_YET_RECRUITING
• Clinical Phase: NA
• Total Enrollment: 200 participants
• Study Classification: INTERVENTIONAL
• Study Start Date: 2026-03-15
• Study Completion Date: 2028-02-15

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.

Detailed Description

Ensuring systematically marginalized populations have access to clinical care that is accessible and meaningful is a vital public health issue. However, many such communities have concerns about available supports and/or lack trust in researchers that study them, precluding advancement of the very comparative clinical effectiveness research (CER) that could address these needs. It is presently unknown what engagement approaches are best suited to bring patients and other stakeholders together to develop shared CER priorities. While frameworks exist for such engagement, no rigorous, comparative research on consequent methods yet exists.

An urgent instance of this gap is the relationship between the autistic community and Applied Behavior Analysis (ABA)-based intervention, which is both viewed as uniformly beneficial by practitioners and enshrined in law by policymakers yet is increasingly denounced and viewed as harmful by autistic adults. This yields a growing chasm between the care that is most widely available to this population, and the willingness of autistic people and their families to engage with it - begging the question of what engagement approach can begin to bridge this rift.

One common approach to bringing stakeholders together to advance CER is to engage them in equitable shared decision-making processes. However, some evidence suggests there may be a unique value to centering marginalized perspectives to more effectively promote equity of engagement and prioritization of CER goals acceptable to the full range of stakeholders. Transformative and Restorative Justice practices offer methods for engagement that offer such centering, particularly around circumstances where some have experienced harm. Thus, a comparison of such approaches, applied to the autism and ABA debate, offers a rich opportunity to both address a pressing needed in this specific community, and identify effective methods for CER engagement in marginalized communities more broadly.

Study Aims:

To develop a Transformative and Restorative Engagement Circle (TREC) approach for centering autistic people in ABA-related CER priority setting.

To compare TREC and SEED approaches on their impacts on engagement with autistic adults & autism stakeholders.

Utilize a partially-masked randomized control trial (RCT) to compare the TREC approach to an established equity-focused approach called Stakeholder Engagement in quEstion Development and prioritization (SEED) approach.

Evaluate the impact on measures of patient and stakeholder buy-in, agency, collective goal setting, and ongoing engagement before, during, and after participating in either the TREC or SEED approaches.

Understand barriers and facilitators for successful engagement.

To compare TREC and SEED approaches in terms of acceptability and importance of identified CER priorities within the broader autistic patient and autism stakeholder communities.

The investigators will field a national survey across the autism community, to assess the relative acceptability of TREC- vs. SEED-derived CER priorities.

Study Description:

The investigators will conduct a three-phase mixed methods study to develop and test the proposed TREC and SEED engagement approaches (EA) and examine the acceptability and importance of the ABA-related CER priorities they produce.

First, investigators will co-develop the TREC EA utilizing participatory research methods in partnership between the CAPBID Leadership Team, autistic Community Advisory Council (CAC), and partnered Transformative and Restorative Justice facilitators. This co-development process will also yield a process by which procedural elements of TREC and SEED will be matched, and quantitative engagement measures will be co-adapted for the autistic community. This phase will take six months.

Second, investigators will conduct a mixed-method embedded randomized controlled trial (RCT) comparing two engagement methods, TREC and SEED. The key manipulation is that TREC centers autistic voices as an example of a marginalized patient population, whereas SEED aims to engage all stakeholders equally. 200 adult participants (100 autistic, 100 other stakeholders, including at least 40 ABA providers, 40 caregivers, and 20 policymakers) will be recruited over 1.5 years from team and partner networks, online fora, conferences, and other spaces representative of target groups. Stratified randomized based on stakeholder group and perspective on ABA appropriateness for autism will be used to assign participants to TREC or SEED. Participants will complete quantitative measures of (primary outcomes) accessibility, buy-in, trust, and collective goal-setting immediately before, at midpoint, and immediately following engagement activities; engagement quality will be measured at midpoint and endpoint. Both TREC and SEED will conclude with prioritization of ABA-related CER goals. (Secondary outcome) Willingness to engage in further ABA-related CER will be assessed at endpoint, 1-week, and 1-month follow-up. A subset will additionally complete qualitative interviews regarding barriers and facilitators to engagement, which will be analyzed thematically.

Finally, investigators will distill ABA-related CER priorities from TREC and SEED, which will then be fielded in a national American sample (n=500 adults; at least 100 autistic, 100 ABA provider, 100 caregiver, 100 researchers, 100 other stakeholders) recruited through online networks and community contacts to identify (primary outcome) differential acceptability of TREC- and SEED-derived priorities. This will take place over 6 months.

This study builds on the leadership of the Centering Autistic Perspectives in Behavioral Intervention Discussions (CAPBID) Leadership Team, a multistakeholder group of autistic people, researchers, scholars, ABA providers, and advocates working to center autistic perspectives in public discussions pertaining to behavioral interventions used in autism supports by directly acknowledging the lived experience of autistic people. The CAPBID team has been working together for more than 3 years to identify better ways to engage autistic people and autism stakeholders to advance more humane, person-centered care.

Conditions

Autism

Study Design

• Allocation Method: RANDOMIZED
• Intervention Model: PARALLEL
• Primary Study Purpose: BASIC_SCIENCE
• Blinding Strategy: DOUBLE

Study Groups

Transformative and Restorative Engagement Circle (TREC)

Group Type: EXPERIMENTAL

Transformative and Restorative Engagement Circle (TREC)

Intervention Type: 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.

Stakeholder Engagement in quEstion Development and prioritization (SEED)

Group Type: ACTIVE_COMPARATOR

Stakeholder Engagement in quEstion Development and prioritization (SEED)

Intervention Type: 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

Interventions

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.

Intervention Type: 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

Intervention Type: BEHAVIORAL

Eligibility Criteria

Inclusion Criteria

1. Adults over the age of 18

2. Individuals who have had experience with Applied Behavior Analysis (ABA) at any time in their lives who is:

1. An Autistic individual who experienced Applied Behavior Analysis or

2. A practitioner who currently or previously was involved in the delivery of Applied Behavior Analysis

3. Able to communicate fluently in English

4. Individuals who do not report the endpoint values on the AAPS:

1. ABA should never be used for autistic people

2. ABA is the only evidence-based intervention for autism

Exclusion Criteria

1. Under the age of 18,

2. Unable to communicate in English

• Minimum Eligible Age: 18 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: Yes

Sponsors

Patient-Centered Outcomes Research Institute

OTHER

Sponsor Role: collaborator

La Trobe University

OTHER

Sponsor Role: collaborator

Drexel University

OTHER

Sponsor Role: lead

Responsible Party

Matthew Lerner

Associate Professor

Responsibility Role: PRINCIPAL_INVESTIGATOR

Principal Investigators

Matthew D Lerner, PhD

Role: PRINCIPAL_INVESTIGATOR

Drexel University

Dena L Gassner, PhD

Role: PRINCIPAL_INVESTIGATOR

Drexel University

Locations

AJ Drexel Autism Institute

Philadelphia, Pennsylvania, United States

Countries

United States

Central Contacts

Matthew D Lerner, PhD

Role: CONTACT

matthew.lerner@drexel.edu

215-571-2181

Calliana Faulk

Role: CONTACT

cf944@drexel.edu

215-571-3219

Facility Contacts

Calliana Faulk

Role: primary

cf944@drexel.edu

215-571-3219

Related Links

https://www.pcori.org/research-results/2025/engagement-research-autistic-perspectives-behavioral-intervention

PCORI Public Summary Page for this Project

Other Identifiers

2507011294

Identifier Type: -

Identifier Source: org_study_id