Centering Autistic Perspectives in Behavioral Intervention Discussions

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.