Autism Speaks awards nearly $600,000 in Research Planning Grants

Autism Speaks is announcing grant funding to two research teams working to develop a model of care for autistic people across the lifespan who are experiencing severe behavioral challenges. Researchers will also design a method to evaluate the efficacy of this model, with the goal of developing a program that can be replicated by clinicians and service providers in broader communities.

Many people with autism struggle with unhealthy or disruptive behaviors that can put themselves or others at risk and create barriers to full community participation. In fact, research shows that nearly a third of children with ASD experience self-injurious behaviors and more than half of autistic children and teens have been physically aggressive towards others. Often, these behaviors are a result of communication difficulties, sensory overwhelm or stress and anxiety.

However, there is currently no clinical framework for assessing and treating behavioral issues in autistic children and adults. To fill this gap, Autism Speaks asked researchers to develop a model of assessment and intervention for autistic people struggling with harmful behaviors. Applicants were reviewed by the Autism Speaks Medical and Science Advisory Committee (MSAC) as well as several community members.

“These research teams are developing new models of behavioral assessment and intervention that will enhance clinicians’ ability to deliver more effective, personalized care,” said Autism Speaks Interim Chief Science Officer Andy Shih. “Autism Speaks is honored to support these projects and continue to serve as a catalyst for life-enhancing research breakthroughs.”

Learn more about our grant winners below.   

Rutgers University

Wayne Fisher, Ph.D., BCBA-D, Robert Wood Johnson Medical School	Matthew Siegel, MD, Maine Behavioral Healthcare	Henry Roane, Ph.D., Upstate Medical University	Eric M. Butter, Ph.D., Nationwide Children’s Hospital

Project: Developing a randomized controlled trial (RCT) for assessing and treating significant challenging behavior in persons with autism.

Behaviors like self-harm and physical aggression are a major source of stress and frustration for people with autism and their families. While there are many effective interventions to treat these behaviors, many people cannot access the services and therapies they need.

Part of the problem is that researchers have not been able to prove that behavioral interventions are effective in a large randomized clinical trial, limiting insurance coverage of these treatments. Current interventions are also impractical in routine clinical settings, making them inaccessible to people who cannot visit specialists.

This research project aims to make behavioral interventions more accessible by creating a new framework for the assessment and treatment of challenging behaviors. This new model will be flexible enough to address individual needs while being standardized enough to fit a range of treatment settings. With this funding, researchers will collect preliminary data about the model and use it to develop a plan for a full RCT that tests its effectiveness.

University of Nebraska Medical Center

Amanda N. Zangrillo, PsyD, BCBA-D, University of Nebraska Medical Center	Tara A. Fahmie, PhD, BCBA-D, University of Nebraska Medical Center

Project: Developing a Decision-Making Clinical Manual for Assessment and Treatment of Challenging Behavior

Many people with autism struggle with harmful or disruptive behaviors, yet there is no comprehensive manual that clinicians can use to guide their assessment and treatment practices. Instead, service providers rely on individual strategies to manage behavioral challenges, limiting the autistic community’s access to safe and effective interventions.

This project aims to fill that need by developing a decision-making manual that guides clinicians and service providers through the best practices they need to effectively assess and treat severe challenging behaviors. This manual will be in the form of both a written and video database, and will decrease barriers to access while giving people with autism more choice over their treatment options.

Once the manual is built, researchers will gather preliminary data on its feasibility, efficacy and user experience. They will then pilot the manual with families served in the Severe Behavior Department at the Munroe-Meyer Institute and will modify the manual based on the data. Finally, researchers will design a plan for a multi-site RCT in severe behavior programs nationwide.