Project Summary

Background: Just over 2% of 12- to 17-year-olds are autistic, and prevalence is increasing. In Massachusetts, for example, prevalence increased 200% from 2005 to 2015. (Note that we use the terms “autistic adolescents” and “youth with ASD” in this description because of some controversy in the field about terminology). Promoting health and safety for youth with Autism Spectrum Disorder (ASD) is recognized by major research and advocacy organizations as a public health priority. However, the vast majority of ASD research focuses on young children—too little is known about the needs of autistic adolescents. Like neurotypical youth, autistic adolescents are at risk for adolescent behaviors such as alcohol and drug use and dating violence. The problem is that comparative effectiveness research (CER) studies have not been conducted for adolescent risk behavior interventions to reduce or prevent substance use or dating violence for youth with ASD.

Proposed Solution: We will create a racially/ethnically diverse stakeholder advisory board that collaboratively generates a CER agenda to prevent and reduce adolescent risk behaviors among autistic youth. This agenda will include defining key questions, selecting salient evidence-based interventions, establishing patient-centered outcomes, and considering implementation and dissemination.

Objectives: To design meaningful, impactful studies about which interventions work best to prevent or reduce adolescent risk behavior for youth with ASD, we first need a stakeholder-created CER agenda. Thus, our primary objective is to establish an advisory board to co-develop and disseminate this agenda.

Activities: Our methods include the following: (1) recruit 15 stakeholders to our collaborative; (2) meet 12 times; (3) with an ongoing commitment to inclusivity, use human-centered design, principles of community-based participatory research (CBPR), and the PCORI Engagement Rubric, including decision-making equity, to generate research agenda ideas, prioritize and define patient-centered outcomes, nominate evidence-based programs for CER, and plan dissemination; and (4) disseminate the CER agenda, including hosting a symposium for the wider community. At the project’s conclusion, we will have a roadmap for moving forward a CER agenda that meets the needs of youth with ASD and their caregivers, and ultimately supports studies to reduce morbidity and mortality for this population.

Outcomes/Outputs: Outcomes include the following: (1) an established advisory board with expertise needed for current and future research, with a shared vision and values; and (2) a stakeholder-generated research agenda with the goal of preventing or reducing adolescent risk behavior in autistic youth. This research agenda will be disseminated widely to stakeholder communities, including families, medical providers, researchers, and policy makers.

Patient and Stakeholder Engagement Plan: We have garnered the support of key collaborators, including young adults with ASD and their parents/caregivers, medical providers, and community-based providers and advocates that work with youth with ASD. Meetings (with communication between meetings via email) will ensure that all members of the collaborative have equal voice and opportunities to provide ongoing input.

Project Collaborators: This project will be co-led by Boston Medical Center (BMC) researchers Drs. Megan Bair-Merritt and Emily Rothman and Ms. Pamela Palmucci, a member of the BMC Autism Program parents’ group and parent of a 14-year-old son with ASD. Collaborating organizations, which will be represented during monthly meetings, include the Autism Program at BMC, the Boston Asperger/Autism Network, and the Integrative Center for Child Development.

Project Information

Megan Bair-Merritt, MD, MSCE
Boston Medical Center
$249,386

Key Dates

24 months
2019

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Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: November 10, 2022