Amplifying Mothers’ Voices to Advance Health Equity

You can read the studies: On average, Black children receive an autism diagnosis later than white children, and typically three years after the parent first voiced concerns to a pediatrician. But what do these documented health disparities actually look like in the lives of children and their families?

During a summer internship at the Center for Autism & Neurodevelopmental Disorders (CAND), Femitan Ajayi and Mary Aina, second-year medical students at UC Irvine, learned about the real-world impact of a delayed diagnosis — the child forced to sit outside of a classroom, for example, or the mothers exhausted from fighting uphill battles.

“After attending the Voices of Experience: Navigating Autism with Families of Color event, we heard powerful stories from mothers navigating their children’s autism diagnoses,” says Ajayi. “Many shared the emotional and systemic barriers they faced in securing timely and appropriate care for their children.”

The struggles inspired Aina and Ajayi to create a documentary-style narrative to amplify the women’s voices. “Through real patient stories, the documentary aims to educate and advocate around the significant disparities Black children face in receiving an autism diagnosis,” says Aina. “The internship allowed us to bring visibility to this alarming gap, fostering greater awareness, education and advocacy to help drive meaningful change.”

Understanding Health Disparities

Black Americans experience persistent and measurable health disparities, including lower life expectancy, higher rates of chronic disease and mortality, disproportionately high maternal and infant death rates, and a greater risk of preventable deaths compared to white Americans.

This is the backdrop for UC Irvine’s Program in Medical Education Leadership Education to Advance Doctoring – African, Black and Caribbean (PRIME LEAD-ABC), which trains physicians to address the diverse health needs of Black communities, eliminate health inequities and amplify the voices of underrepresented communities.

As PRIME LEAD-ABC students, Aina and Ajayi are dedicated to these goals. “Through early shadowing experiences, I witnessed how patients often faced delays, dismissal, and barriers to receiving timely and equitable care,” says Ajayi, who is interested in becoming a surgeon. “Those experiences shaped my commitment to addressing disparities that disproportionately affect patients of color.”

Aina, who is interested in anesthesiology, is similarly committed to health equity. “This work is deeply personal to me,” she says. “My goal is to advocate for equitable access to care [and] to help rebuild trust between these communities and the healthcare system.”

Building community was a central part of their CAND internship, as Aina and Ajayi worked closely with the Empowering Women of Color (EWOC) parent group. “EWOC represents African American, Black, Caribbean, biracial and multiracial women, raising children with a diagnosis of autism and other neurodevelopmental disabilities,” explains Nellie Valentine, a parent advocate at CAND who appreciated Aina and Ajayi’s innovative approach to supporting parents and educating the community. “They’re committed to helping reshape the story of autism care for ABC families for the future.”

Empowering Mothers of Color

When Aina and Ajayi met the EWOC mothers and heard of their struggles in trying to advocate for their children, it motivated them to produce their documentary, “Empowering Voices: Mothers of Color and Autism.”

“Through our video narratives and interviews with mothers, we identified several recurring and concerning themes,” says Aina. One major finding was the delay in diagnosis that many families experience. “Several caregivers shared that they were often the first to notice that something was different about their child,” says Ajayi, “and that receiving a formal diagnosis required persistent advocacy on their part.”

Delayed diagnoses can also negatively impact a child’s education. “One parent described learning that her son was being kept on the sidewalk outside the classroom due to being labeled as ‘disruptive,’” says Aina. “Even after the diagnosis, many families did not consistently receive the guidance or support needed to navigate the healthcare and educational systems.”

Another finding was the prevalence of caregiver burnout. “Many caregivers shared that they struggle to prioritize their own well-being because of the constant emotional, physical and logistical demands of caring for their children,” says Ajayi.

This prompted Aina and Ajayi to turn the airing of their documentary into a caregiver wellness event that, in addition to showing the film, included journaling and reflection, filling a mason jar with notes of encouragement, and participating in an Embodiology activity led by S. Ama Wray, PhD, a professor of dance at UC Irvine.

“Femitan and Mary created a powerful, heartfelt documentary that beautifully highlighted the autism journey for families of color,” says EWOC member Cecilia Rideout. “They also hosted an in-person self-care event that truly gave caretakers a chance to relax and reset.”

Shanae Stump found the wellness event “extremely refreshing,” sharing that it “fostered clarity, understanding and real solidarity.” Leondra Harris said the event was important in helping her find “balance” and that the resources and training provided have been a “blessing” in helping her child thrive.

Beatriz Resendiz was grateful for the empathy and professionalism Aina and Ajayi showed during filming of their documentary. “They fostered a welcoming environment as I prepared to share my family’s journey.”

Elsa Padilla-Waite appreciated having their stories amplified. “When going through the system feels like we don’t have a voice,” she says, “they created an avenue to make our voices louder.”

Raising Awareness

Aina and Ajayi also presented the documentary with their classmates during their patient-centered clerkship (PACE) reflection lecture, which they titled “Finding Our Voice: Black Mothers at the Crossroads of Race and Neurodiversity.”

“During our PACE lecture, we connected these lived experiences to social and structural determinants of health, illustrating how delayed diagnoses, inadequate support systems, educational inequities, and caregiver burnout are shaped by broader systemic factors,” says Aina.

They hope to eventually make the video publicly available on YouTube so CAND and others can easily use it for education, advocacy, training, and community engagement. “By making the video openly available,” says Ajayi, “we hope it can serve as an ongoing resource to raise awareness, amplify caregiver voices and promote more equitable and compassionate care.”

The video is currently available on Google Drive.

The CAND internships and EWOC group are supported by Service Access and Equity Grant Program funding through the California Department of Developmental Services.

— Shani Murray