When my son Joshua was first recognized with developmental delays—and later with autism—our lives modified in profound methods. The affect wasn’t simply emotional; it was deeply systemic. We entered a world not designed for households like ours.
Joshua Sturdivant
Our story started with quiet questions. Why wasn’t Joshua responding like different kids his age? Why did sure environments overwhelm—or utterly underwhelm—him? Why did I really feel one thing was off, but nobody appeared to grasp?
As a Black mom, I shortly realized that my voice typically carried much less weight in medical and academic areas. My considerations had been minimized, our experiences misunderstood. That actuality hit arduous throughout my first dialogue with Joshua’s pediatrician. I left feeling dismissed—like I used to be overreacting to what I knew had been vital gaps in my son’s responses to the world round him.
So let me say this clearly to different mother and father: Should you aren’t being heard, discover somebody who will hear. You’re the professional in your youngster. Belief your instincts.
The Lengthy Highway to Prognosis
Like many mother and father, I first chalked up Joshua’s habits to character or developmental tempo. However by 18 months, he had only a few phrases. He pointed as an alternative of talking. He averted eye contact. The indicators had been delicate—however persistent.
After experiencing issue swallowing, Joshua’s pediatrician referred him for a Barium Swallow examine. The outcomes revealed his gag reflex hadn’t absolutely developed. He was recognized with developmental delays and commenced receiving early intervention providers. Fortunately, these interventions helped him make significant progress. However deep down, I nonetheless felt there was extra we hadn’t uncovered.
Finally, our remedy staff really helpful autism testing. Saying sure to that course of was emotionally difficult—not as a result of I feared the prognosis, however as a result of I understood the challenges Black boys already face in our society. Including a incapacity to the equation felt like one other heavy layer. However I additionally knew that avoiding the reality wouldn’t serve my youngster.
After receiving the autism prognosis, we entered yet one more maze: the service supplier consumption course of. Regardless of my background as a licensed medical social employee, I encountered repeated delays, dismissiveness, and a troubling lack of cultural sensitivity. Sadly, this isn’t uncommon. Analysis exhibits that Black kids are recognized later and misdiagnosed extra typically—often lacking crucial home windows for early help.
Let me be clear: The sooner autism is recognized, the earlier significant help can start. For households like mine, these helps typically really feel out of attain.
When the Programs Fall Brief
Navigating providers turned a full-time job. Types. Jargon. Waitlists. Denials. Even with my skilled coaching, the method was overwhelming.
However paperwork was solely a part of the issue. The larger problem was discovering professionals who really noticed us. Too typically, suppliers introduced assumptions to the desk. They checked out us by a lens of deficit. I used to be talked over, second-guessed, and subtly criticized—generally all in the identical appointment.
Cultural competence is not only a checkbox. It means listening with out assumptions, respecting lived expertise, and resisting the urge to “repair” what is solely totally different. It means assembly households like mine with humility, not pity—with partnership, not paternalism.
Mother and father are the consultants on their kids. We’d like professionals who acknowledge that and act accordingly.
What Helped Us Thrive
Amid all of the challenges, there have been vivid moments.
The suppliers who listened with out judgment. The group packages welcomed us with out hoops. The relations who leaned in with open hearts as an alternative of questions.
However most of all, what helped was shifting the narrative: Joshua was not an issue to unravel—he was a toddler to grasp and rejoice.
We realized to advocate fiercely, love boldly, and construct a help system that mirrored who we’re—not who the system assumed we must be.
What I Need Different Mother and father to Know
Should you’re simply starting this journey, please know:
- You aren’t alone.
- Your considerations are legitimate.
- Your voice issues.
- And your youngster—your stunning, complicated youngster—deserves to be seen absolutely, not partially.
To the professionals who work with households like mine: thanks. However I encourage you to continue to grow. Cultural responsiveness just isn’t elective—it’s important. The perfect help begins not with recommendation however with listening.
Our Journey Continues
Autism just isn’t one-size-fits-all. But, too many techniques nonetheless deal with it that means. For households of shade, the highway is commonly longer, tougher, and extra complicated. However it is usually full of love, power, and resilience.
Our journey with Joshua continues. And I share it with the hope that others—mother and father, professionals, educators, and policymakers—will hear us, imagine us, and do higher.
As a result of each household deserves to be seen. And each youngster deserves the possibility to thrive.
Danyale Sturdivant, MSSW, is a nationally acknowledged incapacity justice advocate, fairness strategist, and medical social employee with over 20 years of expertise supporting racially and ethnically numerous communities. Because the founding father of Residing Autism Out Loud, she leads initiatives that uplift the voices of marginalized households navigating autism and incapacity techniques. Her work facilities on culturally responsive advocacy, household empowerment, and systemic change throughout training, well being care, and public coverage. Danyale brings lived expertise, skilled rigor, and unwavering dedication to intersectional fairness in each house she enters. Study extra or join at: www.livingautismoutloud.org.