Exploring challenging behavior, trauma, and caregiving among siblings of autistic individuals
Project Description:
After their parents pass away, siblings are likely to be caregivers for their autistic brothers and sisters. However, when the brother/sister has profound autism (i.e., autism and an intellectual disability resulting in challenging behaviors [CB]), the potential caregiving sibling may struggle. Indeed, some siblings may refuse to become caregivers because of their past trauma with the CB of their brothers/sisters. By understanding the experiences of families of individuals with profound autism, we can discern the effects of CB on siblings. Using Trauma Exposure Theory and the Hidden Talents Framework, our study explores the effects of trauma on siblings of individuals with profound autism. Our mixed methods studies will help identify the correlates of caregiving capacity as well as will help inform adaptations to a measure of trauma so it is specific to siblings of individuals with profound autism. Every step of our project includes members of the autistic community and national partners to ensure that the project's findings result in real and meaningful impact for the autistic community. As a result of this project, we will develop several products to disseminate our findings including: policy briefs, tipsheets, webinars, and family story videos. Altogether, our project will enrich our collective understanding of siblings of individuals with CB and inform the development of a caregiving intervention to support families of individuals with profound autism.
Keyword(s):
Mental/Behavioral Health – Autism
Core Function(s):
Performing Research or Evaluation, Developing & Disseminating Information
Area of Emphasis
Health-Related Activities, Quality of Life
Target Audience:
Family Members/Caregivers, Adults with Disabilities
Unserved or Under-served Populations:
None
Primary Target Audience Geographic Descriptor:
National
COVID-19 Related Data:
N/A
