Racial disparities continue to exist in autism research, negatively impacting Black autistic children. They are misdiagnosed, receive access to inferior quality services, and are almost twice as likely as white autistic children to have a co-occurring intellectual disability.

To examine this void, the National Institute of Mental Health funded the "Racism and Resilience among Black Autistic Children and Caregivers" project. This Multiple Principal investigator (MPI) and R01-funded project launched April 1, 2024.

“We are thrilled to collaborate with Dr. Boyd, Dr. Iruka and their lead community partner Camille Proctor, on this ground-breaking 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), serves as the project’s lead principal investigator (PI) with co-PI FPG Faculty Fellow Iheoma Iruka, PhD, the founding director of the Equity Research Action Coalition at FPG. Community partner Camille Proctor, founder and director of The Color of Autism Foundation—a nonprofit organization committed to educating and assisting African American families affected by autism—brings her perspective as a mom of a Black autistic son and a fierce advocate to this project. In addition to McGhee Hassrick at Drexel,  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 serve as co-investigators.

The researchers understand that race is a social determinant of health and that Black communities are disproportionately affected by adverse physical and mental health outcomes. Yet the team also knows that race is a social construct, and the underlying driver of disparity is often due to racism, such as inequitable identification and access to services and support. There has not yet been a thorough examination of the interaction between race and disability within autism even though there are evident and persistent racial disparities. The consequence of this chasm in research is that racism and its associated consequences are potentially having deleterious effects on Black autistic children’s longer-term outcomes and prognosis.

“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.”

During this project, the team will examine the heterogeneity of Black families with autistic children by categorizing the sample based on families who live above versus at or below the federal poverty threshold. This will separate the effects of race and class, which has not been done in most prior research on Black families of autistic children. The researchers will use a sequential explanatory mixed methods research design—in which qualitative data are used to help interpret quantitative findings—with 300 Black parents of autistic children, ages 3 through 9.

The project’s aims are to:

• Understand the impact of racism (i.e., everyday racism and racialized trauma) on the well-being (i.e., quality of life, stress, caregiver strain) of Black parents of autistic children.
• Examine whether parents’ experiences with racialized trauma adversely affects child behaviors and development.
• Determine 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 overall project management and data collection for half of the study’s sample. Allen-Handy’s Justice-oriented Youth Education Lab will lead the qualitative research data collection and analysis, as well as recruitment and community engagement. Sheridan’s Clinical Core team will conduct clinical assessments for Drexel-recruited participants.

This study builds on decades of research that have established that parenting matters to the growth and development of young children. Race and culture play a role in parenting and are associated with differences across racial groups in factors that promote resilience or increase risk. For example, Black parents use racial-ethnic socialization practices, such as promoting racial pride and preparation for racial bias, which have been shown to have positive outcomes for children. At the same time, Black parents also have a culturally unique experience that affects their own well-being and parenting because of both microlevel exposures to racially discriminatory encounters and the macrolevel impacts of 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.

Persistent exposures to discrimination, and the resulting racialized trauma, negatively affect the quality of life and health of Black Americans. For Black parents of autistic children, the intersectional identities of being Black and a parent of a child with autism/disability cannot be divorced. Both must be considered when examining the relationship between parenting and child outcomes.

Project researchers know that a race-focused approach is needed in autism to understand the effects of racism and disability on Black parents and their children. But they do not want to focus solely on disparities. Instead, they are also examining the cultural capital and assets these parents leverage to support themselves and their children. With the long-term goal of developing culturally tailored interventions and/or service delivery models for Black autistic children, the team is committed to understanding the strengths of Black families and communities.

“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.”

Click here for more information.