OARacle Newsletter

In October 2024, OAR’s Board of Directors authorized funding for five applied autism research grants and one autism resource grant. These new research grants, totaling $288,930, bring OAR’s total research funding to $5.3 million since 2002. This article is the fourth of the previews to be featured in The OARacle this year. 

Profound autism affects the whole family, siblings included. Challenging behavior can pose particular and often intractable challenges to the sibling relationship. So much so that a sibling may refuse to take on a caregiver role when the parents are no longer able to care for the person with profound autism. Understanding the consequences of challenging behavior for family members and the family as a whole is a first step to reducing those challenges.

To have a holistic understanding of the consequences of challenging behavior on the siblings of individuals with profound autism, it is important to involve every family member—the person with profound autism, siblings, and parents. Unfortunately, most existing sibling research only reflects the perspective of the sibling of the person with profound autism. 

Meghan Burke, Ph.D., plans to explore the effects of trauma on siblings of individuals with profound autism in her two-year, OAR-funded study, Exploring Challenging Behavior, Trauma, and Caregiving Among Siblings of Autistic Individuals. Dr. Burke will solicit information from the sibling, the family member with profound autism, and a parent.

The goals of her study are to:

• Explore the lived experiences of individuals with profound autism, their siblings, and their parents in relation to trauma caused by challenging behavior. 

• Identify the correlates—including risk and protective factors—of caregiving among siblings of individuals with profound autism. 

• Develop and share resources, such as tipsheets, policy briefs, videos, and webinars, with families, practitioners, and policymakers to help them support siblings.

Dr. Burke is a professor of special education at Vanderbilt University. Her research examines families of autistic individuals. She has collaborated with the Sibling Leadership Network, Grupo Salto, and the Sibling Support Project for the past 10 years. She is also a board member of The Arc of the United States. She has more than 135 peer-reviewed publications related to individuals with disabilities, primarily autism. She also has lived experience as the parent of an autistic child.

Methodology

Aim 1: Interviews: The research team will recruit 15 sets of a parent, a sibling, and a sibling with profound autism through parent and sibling organizations. To be included, each participant must be older than 18 and willing to complete a questionnaire and interview. The autistic sibling must have profound autism, challenging behavior, and be able to communicate verbally, by sign language, or with augmentative and alternative communication. The research team will also make accommodations, such as simplified language, a support person, visual cues, and conducting the interviews in smaller segments. 

Each interview will take between one and one and a half hours. At the end of the interview, the researcher will conduct a follow-up interview to ask the participant about each item on the conflict tactics scale, which is used in family violence research. For example, one item on the scale is “threatened to hit or throw something.” The interviewer will ask the participant to describe their thoughts, interpretation of the item, process of determining their response, and suggested revisions to the item to align with their experiences. 

Aim 2: Survey: The research team will conduct an online survey of 200 siblings, 18 and older, of individuals with profound autism. They will recruit participants from across the country and will include diverse racial and ethnic identities. The goal of the survey is to identify the correlates of caregiving. 

Aim 3: Resources: With their partner organizations (the Sibling Leadership Network, the Sibling Support Project, The Arc of the U.S., Family-Centered Care for Black Autistic Children [FACES}, and Grupo Salto), they will develop and disseminate four tip sheets, four policy briefs, four short videos of family experiences, and four webinars. Each partner has experience translating research findings into accessible resources. 

Evaluation

The research team will analyze the interviews and surveys to explore the effects of trauma on siblings of individuals with profound autism. The study will help identify the correlates of caregiving capacity as well as inform adaptations to a measure of trauma so it is specific to siblings of individuals with profound autism.

They will also evaluate the resources they develop as part of the study by identifying relevant outcome and output for each resource. For example, for policy briefs, they will determine the number of times policymakers use the policy briefs. For tipsheets, they will track the number of times they are shared on social media.

Outcomes

This project can help ameliorate the challenges in sibling caregiving of individuals with profound autism by: 

• Exploring family dynamics in relation to siblings of individuals with profound autism, their autistic siblings, and their parents. That understanding of family dynamics will inform a comprehensive model of challenging behavior, which in turn will inform an intervention that Dr. Burke hopes to develop with future funding. That intervention will address sibling caregiving of individuals with profound autism, including challenging behavior.  

• Revising the conflict tactics scale to reflect trauma among siblings of autistic individuals. The revised scale can help researchers and practitioners to identify trauma among siblings of autistic individuals and address it.  

• Identifying siblings who are likely to provide caregiving and who is less likely to provide caregiving in order to identify and leverage facilitators of caregiving. Those individuals who are least likely can be identified for assistance through the planned intervention.  

• Offering data to improve the current state of our mental health system. There are limited services for adults with profound autism and their families. The products generated from this study can inform needed systemic change in how mental health services are delivered.

This study has the potential to enrich our collective understanding of siblings of individuals with challenging behavior and inform the development of a caregiving intervention to support families of individuals with profound autism. 

Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.