When my son Joshua was first diagnosed with developmental delays—and later with autism—our lives changed in profound ways. The impact wasn’t just emotional; it was deeply systemic. We entered a world not designed for families like ours.
Joshua Sturdivant
Our story began with quiet questions. Why wasn’t Joshua responding like other children his age? Why did certain environments overwhelm—or completely underwhelm—him? Why did I feel something was off, yet no one seemed to understand?
As a Black mother, I quickly learned that my voice often carried less weight in medical and educational spaces. My concerns were minimized, our experiences misunderstood. That reality hit hard during my first discussion with Joshua’s pediatrician. I left feeling dismissed—like I was overreacting to what I knew were significant gaps in my son’s responses to the world around him.
So let me say this clearly to other parents: If you aren’t being heard, find someone who will listen. You are the expert on your child. Trust your instincts.
The Long Road to Diagnosis
Like many parents, I first chalked up Joshua’s behavior to personality or developmental pace. But by 18 months, he had very few words. He pointed instead of speaking. He avoided eye contact. The signs were subtle—but persistent.
After experiencing difficulty swallowing, Joshua’s pediatrician referred him for a Barium Swallow study. The results revealed his gag reflex hadn’t fully developed. He was diagnosed with developmental delays and began receiving early intervention services. Thankfully, those interventions helped him make meaningful progress. But deep down, I still felt there was more we hadn’t uncovered.
Eventually, our treatment team recommended autism testing. Saying yes to that process was emotionally complicated—not because I feared the diagnosis, but because I understood the challenges Black boys already face in our society. Adding a disability to the equation felt like another heavy layer. But I also knew that avoiding the truth would not serve my child.
After receiving the autism diagnosis, we entered yet another maze: the service provider intake process. Despite my background as a licensed clinical social worker, I encountered repeated delays, dismissiveness, and a troubling lack of cultural sensitivity. Sadly, this isn’t rare. Research shows that Black children are diagnosed later and misdiagnosed more often—frequently missing critical windows for early support.
Let me be clear: The earlier autism is identified, the sooner meaningful support can begin. For families like mine, those supports often feel out of reach.
When the Systems Fall Short
Navigating services became a full-time job. Forms. Jargon. Waitlists. Denials. Even with my professional training, the process was overwhelming.
But paperwork was only part of the problem. The bigger issue was finding professionals who truly saw us. Too often, providers brought assumptions to the table. They looked at us through a lens of deficit. I was talked over, second-guessed, and subtly criticized—sometimes all in the same appointment.
Cultural competence is not just a checkbox. It means listening without assumptions, respecting lived experience, and resisting the urge to “fix” what is simply different. It means meeting families like mine with humility, not pity—with partnership, not paternalism.
Parents are the experts on their children. We need professionals who recognize that and act accordingly.
What Helped Us Thrive
Amid all the challenges, there were bright moments.
The providers who listened without judgment. The community programs welcomed us without hoops. The family members who leaned in with open hearts instead of questions.
But most of all, what helped was shifting the narrative: Joshua was not a problem to solve—he was a child to understand and celebrate.
We learned to advocate fiercely, love boldly, and build a support system that reflected who we are—not who the system assumed we should be.
What I Want Other Parents to Know
If you’re just beginning this journey, please know:
- You are not alone.
- Your concerns are valid.
- Your voice matters.
- And your child—your beautiful, complex child—deserves to be seen fully, not partially.
To the professionals who work with families like mine: thank you. But I encourage you to keep growing. Cultural responsiveness is not optional—it’s essential. The best support begins not with advice but with listening.
Our Journey Continues
Autism is not one-size-fits-all. Yet, too many systems still treat it that way. For families of color, the road is often longer, harder, and more complex. But it is also filled with love, strength, and resilience.
Our journey with Joshua continues. And I share it with the hope that others—parents, professionals, educators, and policymakers—will hear us, believe us, and do better.
Because every family deserves to be seen. And every child deserves the chance to thrive.
Danyale Sturdivant, MSSW, is a nationally recognized disability justice advocate, equity strategist, and clinical social worker with over 20 years of experience supporting racially and ethnically diverse communities. As the founder of Living Autism Out Loud, she leads initiatives that uplift the voices of marginalized families navigating autism and disability systems. Her work centers on culturally responsive advocacy, family empowerment, and systemic change across education, health care, and public policy. Danyale brings lived experience, professional rigor, and unwavering commitment to intersectional equity in every space she enters. Learn more or connect at: www.livingautismoutloud.org.
