New Initiative Explores Racism and Resilience Among Black Autistic Children and Their Caregivers

Img source: fpg.unc.edu

April 30, 2024 Story by: Editor

Persistent racial disparities in autism research negatively impact Black autistic children, leading to frequent misdiagnoses, substandard services, and a nearly doubled likelihood of co-occurring intellectual disabilities compared to their white counterparts.

To address this gap, the National Institute of Mental Health has funded the "Racism and Resilience among Black Autistic Children and Caregivers" project. This Multiple Principal Investigator (MPI) and R01-funded initiative began on April 1, 2024.

“We are thrilled to collaborate with Dr. Boyd, Dr. Iruka, and their lead community partner Camille Proctor, on this groundbreaking study,” said Elizabeth McGhee Hassrick, PhD, a co-investigator at Drexel University and associate professor in Drexel’s A.J. Drexel Autism Institute. “By centering Black voices and experiences, this research will be instrumental in building culturally-responsive support systems for Black families in the autism community. The project directly addresses the impact of racism on both parents and children, a critical gap in current understanding.”

Brian Boyd, PhD, interim director of the University of North Carolina-Chapel Hill Frank Porter Graham Child Development Institute (FPG) , is the lead principal investigator (PI), with co-PI FPG Faculty Fellow Iheoma Iruka, PhD, founding director of the Equity Research Action Coalition at FPG. Camille Proctor, founder and director of The Color of Autism Foundation , offers her perspective as a mother of a Black autistic son and a dedicated advocate. Other co-investigators include McGhee Hassrick, Ayana Allen-Handy, PhD, associate professor in Drexel’s School of Education, and Elisabeth Sheridan, PhD, Clinical Core Director at the A.J. Drexel Autism Institute.

The research team acknowledges that race, a social determinant of health, disproportionately affects Black communities, leading to adverse physical and mental health outcomes. They recognize that racism, rather than race itself, drives disparities such as inequitable identification and access to services. Despite the evident and persistent racial disparities in autism, there has been little comprehensive examination of the intersection between race and disability. This gap means that the impacts of racism on Black autistic children’s long-term outcomes remain underexplored.

“We can no longer ignore that Black autistic children and their caregivers are having a different experience,” said Boyd. “Through this project, we are seeking to partner with the Black and African American community to better understand their autism journey and ensure their voices are heard and represented throughout the research process.”

This initiative will explore the diversity among Black families with autistic children by categorizing participants based on whether they live above or below the federal poverty threshol d. This method allows the team to separate the effects of race and class, an approach not commonly used in previous research on Black families of autistic children. Using a sequential explanatory mixed methods design, the study will involve 300 Black parents of autistic children, aged 3 to 9, with qualitative data used to help interpret quantitative findings.

The project’s objectives include:

1. Understanding the impact of racism (e.g., everyday racism and racialized trauma) on the well-being (quality of life, stress, caregiver strain) of Black parents of autistic children.

2. Investigating whether parents’ experiences with racialized trauma adversely affect child behaviors and development.

3. Identifying cultural capital factors, such as parents’ social networks, that moderate the impact of racism on parental well-being.

McGhee Hassrick’s Social Dynamics of Intervention Lab will lead project management and data collection for half of the study’s sample. Allen-Handy’s Justice-oriented Youth Education Lab will handle qualitative research data collection and analysis, recruitment, and community engagement. Sheridan’s Clinical Core team will conduct clinical assessments for Drexel-recruited participants.

Building on decades of research showing the importance of parenting in child development, this study highlights the roles of race and culture in parenting practices. Black parents use racial-ethnic socialization, such as promoting racial pride and preparing for racial bias, which has positive outcomes for children. However, Black parents also face unique cultural challenges due to microlevel racial discrimination and macrolevel systemic racism (e.g., segregation, poverty, social exclusion).

“It is important that we fully humanize the experiences and contexts that Black families and their autistic children live in by showing both the inequities in their daily lives and how they cope through their resiliency and resistance to injustices,” said Iruka.

Racialized trauma from continuous discrimination negatively affects the quality of life and health of Black Americans. For Black parents of autistic children, their intersectional identities necessitate considering both their race and their role as a parent of a child with autism/disability when examining the relationship between parenting and child outcomes.

The research team emphasizes the necessity of a race-focused approach in autism research to understand the effects of racism and disability on Black parents and their children. They aim to identify and leverage the cultural capital and assets of these parents to support themselves and their children better. Ultimately, the project seeks to develop culturally tailored interventions and service models for Black autistic children.

“I know firsthand the importance of culturally informed care that reflects the voices and experiences of the Black community,” said Proctor. “Having developed this project in collaboration with the research team, I trust that this research will uplift the Black community and add our unique voice and perspective to autism research.” Source: Drexel News e to autism research.” Source: Drexel News