OARacle Newsletter

“We are people of color, we’re Black, that’s part of our culture…the experience as a Black caregiver, it’s very, very layered.” The caregiver went on to say that the experiences of Black caregivers of autistic children are layered due to intersecting identities led by how they perceive themselves and how they are perceived and treated by others. Black caregivers’ strength is rooted in resilience, not by choice, but because they must continue to rise in the face of systemic barriers, for example, cultural mismatch, which can impact caregiver-provider interactions, such as access, communication, trust, and outcomes.

The mother quoted above participated in a research study I recently conducted focusing on the experiences of Black caregivers navigating the autism care pathway, a narrative that is often overlooked. In discussions with mothers across the United States, all identifying as Black but with diverse racial and ethnic backgrounds, I listened as they described their journey within the autism care pathway as “exhausting.” While their words depicted sacrifice, their voice, body language, and sighs exposed both the weight of it all and the undeniable spirit to fight. The stories shared with me during this study offered insight into next steps, extending beyond identifying disparities to actively working with school-based and healthcare providers to reduce them.

How Educators and Providers Can Support Black Caregivers of Autistic Children

Partnering with Black Families: Where Trust Lies: Mistrust among the Black community toward education and health systems is rooted in patterns of historical mistreatment, exploitation, and being dismissed, among other persistent disparities that are reinforced by present wrongdoings. Partnering with families is not a straightforward approach. However, educators and providers must understand that partnering is a continuous investment and that trust gradually develops over time. Building equitable partnerships with families could begin with:

• Connecting with invested community partners and cultural insiders within the Black and autistic community to get to know the people within the spaces where you work.
• Acknowledging that caregivers are the experts on their children. Listen to caregivers’ needs and address their priorities in culturally appropriate ways.
• Working alongside Black caregivers to co-develop trusted hubs where Black families raising autistic children can gather to interact and share their experiences. As one caregiver in the study expressed, they wanted to understand “what does autism look like on us [Black people]?”
  • Use a central location (e.g., school, church, barbershop, community center) that is easily accessible within the community to host caregiver trainings that seek to increase understanding, reduce stigma, and feature community resources, such as prosocial activities and therapy.

Bridging Gaps in Caregiver Support: From Awareness to Action

Lean into Culturally Responsive Practices: There is an abundance of research detailing the disparities that Black and other racial ethnic minorities encounter when navigating the autism care pathway. Yet, research that offers practical solutions for reducing disparities across school-based and healthcare settings is limited. Based on my research with Black caregivers of autistic children, I recommend that both educators and providers use culture as a facilitator, advancing beyond mere awareness to drive actionable change:

• The majority of evidence-based interventions are normed on White, middle-class, English-speaking children and families. Educators and providers should provide culturally appropriate care and consider culturally tailoring or adapting interventions to support Black children and families through imagery, language, discipline, hygiene, worldview, faith, and literacy levels. While it may take more time, research shows that Black caregivers yearn for culturally tailored approaches. Efforts to include families’ cultural experiences can improve outcomes and increase engagement.
• Recognize the richness of cultural assets. Families come to providers holding a wealth of resistance, familial support, resilience in navigating systems, and advocacy. Providers might use these to guide decision-making and integrate families’ strengths into services and programs. These resources provide helpful information:
• Autism In Black
• Black Autism Support Society
  • FACES
  • Paths to Equity: Parents in partnership with UCEDDs fostering Black family advocacy for children on the autism spectrum
• Commit to continuous growth. Participate in anti-bias training and reflect on individual biases about the Black community that may influence quality of care. Then, take action by actively applying what you have learned to shape your practice and daily interactions.

Black caregivers of autistic children face many challenges to their care as a result of systemic barriers and intersecting identities. Educators and providers can address these challenges by partnering with Black caregivers who often have nuanced needs and by adapting their practices to support equitable and sustainable engagement.

Ja’Toria S. Palmer is a fifth-year doctoral candidate at Indiana University-Bloomington, currently completing her internship at the University of Tennessee Health Science Center. During her internship, she is training with the Center on Developmental Disabilities, Le Bonheur Children’s Hospital, and St. Jude Children’s Research Hospital.  She will complete her post-doc fellowship at Nemours Children’s Hospital at the Swank Autism Center. Her research focuses on culturally responsive assessment and intervention, with particular attention to reducing disparities within the autism care pathway and improving access to services for Black children and their families.