April 8, 2025

Drexel University’s A.J. Drexel Autism Institute will evaluate approaches for addressing the divide within the autism community around the use of applied behavioral analysis (ABA)-based interventions, with support from a funding award from the Patient-Centered Outcomes Research Institute. Led by the Institute’s Life Course Outcomes Research Program, the research aims to center the voices and experiences of autistic individuals to identify and guide future behavioral intervention priorities for autistic individuals, their families and caregivers, and mental health providers.

“For many years, often well-intended, under-supported, and overwhelmed parents and teachers, at the urging of their doctors and other clinicians, have sought aid from the ABA intervention community to help autistic children,” said  Matthew Lerner, PhD,  associate professor, leader of the Life Course Outcomes Research Program, and director of the Social Connections and Treatment Lab, who is one of the principal investigators. “Historically, many behavioral intervention approaches sought to repress behaviors that were seen as odd or disruptive, or were sometimes painfully intensive in their delivery approaches. Over time, autistic people and their families began to call attention to harms and frustrations they experienced with these approaches. Often, the responses to these experiences from the ABA clinician community have been received as dismissive or not fully appreciative of the experiences of autistic people. This has created a big gap in the community, where the people who want and need care do not find the care that is being offered acceptable.”

The effort builds on a collaborative, multidisciplinary, international team of clinicians, researchers and autistic community leaders — co-founded by Dena Gassner, PhD, senior research scientist in the Autism Institute’s Life Course Outcomes Program and Social Connections and Treatment Lab, also a principal investigator of the grant — that has sought to make progress on these issues for almost four years.  

“The divide between those who have found the treatments harmful and those who have found it helpful has not allowed for safe and supportive discourse to find a place of understanding, healing and advocacy for autistic individuals,” said Gassner.

The aim of the project is to examine different ways of bringing these groups – who have disparate experiences, but a common goal of improving the lives of autistic people – together to guide the future of this field. Specifically, the project is designed to study engagement — the ways in which different people come together and feel heard and valued.  This project leverages a community-driven, participatory team science approach to examine different methods for centering autistic people in conversations on the use of ABA for autistic people.

 "We began this journey seeking a way forward –to light a beacon for finding agreement where we can, for the purposes of informing research, community engagement, and policy around this difficult subject,” said Gassner.

The study will examine two approaches to helping autistic individuals, ABA providers, other therapeutic providers, parents and community members to come together to listen, hear and respond to the autism community’s needs.

In one approach, the goal is to give everyone an equal seat at the table to plan and set priorities together. The other is an innovative approach that the research team will develop, which will give autistic people – who have largely felt unheard in these discussions – the space and time to talk about their own experiences — including harm — with ABA, and to acknowledge those experiences first, in order to foster meaningful discussion around these interventions.

Both approaches will seek to create spaces of safety, respect and dignity to encourage thoughtful conversations while maintaining personal wellness and care. These approaches will occur at a series of in-person events, with participants from the community including autistic people, ABA providers and other members of the autism community, such as family members, assembling in small groups. In total, 200 people will participate in these groups.

Following the in-person events, a secondary examination of the priorities will include a nationwide survey of 500 members of the autistic and autism communities.

“The strengths of this study include centering autistic voices at all stages in the process – from members of our research and leadership team, including the co-principal investigator, through community advisors with both low and high support needs — and throughout project execution,” said Lerner. “It will also utilize rigorous research methods designed to identify the specific elements of engagement that are most affected by each approach. In this way, we will build insights into better ways to bring together communities that may seem to be at odds with one another to better achieve common goals – not just in the autism community, but in society more broadly.”

This study is among the latest the Patient-Centered Outcomes Research Institute has funded that focus on building an evidence base to support development of measures and approaches that strengthen meaningful engagement in comparative clinical effectiveness research.

“Much has been learned in recent years about participatory research that seeks to involve the ultimate end users of study results, including patients, caregivers, clinicians and others, as partners in the research process,” Lerner said. “However, until now, there has been little systematic study about which engagement techniques are most effective.”

This is Lerner’s second award from the Institute. Lerner and Ava Gurba, a research associate in the Autism Institute, have also recently received the Eugene Washington PCORI Engagement Award Program to examine patient-centered comparative clinical effectiveness research that focuses on the priorities of autistic individuals and key stakeholders to improve mental health services and make them more accessible.

The award for the study, “Adapting and Testing a Novel Method of Engagement in Research: Centering Autistic Perspectives in Behavioral Intervention Discussions,” has been approved pending completion of a business and programmatic review by PCORI and issuance of a formal award contract.