Bridging the Gap: Why Black Voices Must Shape Mental Health Research

My journey with mental health didn’t just shape my perspective; it led me to this work. As Director of Mental Health Equity Innovation at NAMI, I bring both professional expertise and personal lived experience to the fight for mental health equity. I know firsthand the impact of being overlooked, misdiagnosed, and misunderstood. That’s why I’m committed to making sure Black/African Ancestry voices are at the center of research, advocacy, and care.

In the fall of 2023, I came across a LinkedIn post calling for volunteers to participate in a study on neurodevelopmental disorders in historically minoritized communities. As a Black woman newly diagnosed with ADHD (attention deficit hyperactivity disorder), I eagerly signed up, hoping to share my story and connect with others who could relate.

For the first time, in one-on-one meetings and focus groups with other neurodivergent people of color, I felt seen. My experiences were validated in ways they had never been before. The study’s lead researcher, a Black woman and mother of two neurodivergent children, was on a mission to amplify our voices. Drawing on our shared lived experiences to create groundbreaking research, she now plans to publish a book that empowers individuals to better understand themselves, realize they’re not alone, and equips families with the tools to advocate for their loved ones. 

But the fact that research like this is still so novel underscores a deeper issue, one that has profoundly impacted my life. For years, I struggled with undiagnosed ADHD, misdiagnosed with other conditions while searching for answers. My story is not unique, and that is precisely the problem. Black/African Ancestry voices are still not adequately represented in mental health research, leaving too many people unheard, unsupported, and untreated. 

To the outside world, I had accomplished a lot—graduating from top universities, including law school, traveling and working internationally, and holding senior roles in highly regarded organizations. But beneath the surface, throughout my mid-20s to early 30s, I struggled to keep a job, faced eviction, defaulted on student loans, and drank heavily to quiet my racing thoughts and overwhelming feelings of anger, isolation, and hopelessness. 

In 2010, a therapist suspected I may have ADHD. My response? That’s not something Black women have. I had never seen myself reflected in conversations about ADHD, and I dismissed the idea. Over the next 13 years, I cycled through different doctors and different diagnoses (depression, anxiety, bipolar disorder II), none of which fully explained my struggles. I knew something wasn’t right, but without research, representation, or a roadmap, healthcare professionals, family members, and I remained in the dark as to what was going on. 

In 2019, I took on a leadership role at a university, working with students, staff, and faculty to foster an inclusive community. Mental health awareness and advocacy became central to my work, and I openly shared my own journey, recognizing the power of representation. I quickly realized that my experiences resonated with high-achieving, often overwhelmed students. As a Black woman, I sought to highlight that mental health conditions don’t discriminate while addressing the unique stigmas within communities of color.

In 2023, I decided to undergo an extensive neuropsychological assessment, and when I finally received an ADHD diagnosis, everything clicked. Since then, I’ve focused on researching ADHD and connecting with various groups to better understand how it shaped my experiences. However, some of the most valuable insights came from blogs and communities dedicated to people of color with ADHD, as medical research on those within the Black/African Ancestry community remained limited. 

Disparities in diagnosing ADHD and other mental health conditions, as well as the care provided, aren’t solely due to misdiagnosis or inadequate treatment; they originate from a history of systemic underrepresentation of Black/African Ancestry individuals in research. In 1997, a study highlighted that just 16 of thousands of ADHD articles addressed African-American youth.ⁱ Twelve years later, another study questioned whether current diagnostic tools effectively capture ADHD in African-American children.ⁱⁱ By 2024, the gap in understanding remained, with research revealing that Black adults, particularly Black women, are diagnosed with ADHD much less frequently than their White counterparts, despite similar symptoms and struggles.ⁱⁱⁱ

Reading these studies, I realized I didn’t really have a chance to understand what was happening to me growing up or as a young adult. My family didn’t have that chance to understand either. Nowhere did it say this could happen to their Black daughter. Even now, that research remains difficult to find for laypeople, and without greater awareness and advocacy, it risks becoming even more inaccessible.  

That’s why NAMI’s Community Health Equity Alliance (CHEA) is so critical. CHEA works to ensure Black/African Ancestry voices and stories shape mental health advocacy and inform real change in policy and practice. Through this work, we’re not just increasing representation—we’re making sure that lived experience drives research, improves care, and reaches the people who need it most. 

 This work is personal to me. It’s the reason I found my way to NAMI. If initiatives like CHEA had existed when I was younger, my story might have looked different. But together, we can create a future where stories from those within Black/African Ancestry communities are no longer missing from research, where lived experiences drive systemic change, and where no one feels invisible in their mental health journey.

Stephanie Robertson is a mental health advocate dedicated to creating stigma-free environments while advancing strategies to address disparities in mental health care. She currently serves as the Director of Mental Health Equity Innovation at the National Alliance on Mental Illness (NAMI).

ⁱ The unexplored void of ADHD and African-American research: A review of the literature
ⁱⁱ Attention deficit hyperactivity disorder in African American children: what can be concluded from the past ten years?
ⁱⁱⁱ Large-scale analysis reveals racial disparities in the prevalence of ADHD and conduct disorders