“I simply thought I was a lazy student and I needed to try harder,” Aaron said, wiping the tears behind her thick, black-framed glasses.
But then she was diagnosed with attention-deficit/hyperactivity disorder and it all made sense.
For many Black women like Aaron, finally having that answer comes with both relief and grief after years of suffering and being misunderstood. Already subject to unique discrimination at the intersection of gender and race, Black girls with ADHD often remain undiagnosed because their symptoms are mischaracterized. Signs of inattentiveness or impulsivity, the two main features of the disorder, could be mistaken for laziness or defiance. And the longer these girls aren’t diagnosed and treated, the more their problems are likely to worsen as they grow into adults.
While the 2016 National Survey of Children’s Health showed 6.1 million children ages 2 to 17 in the United States have received a diagnosis for ADHD at some point, millions more adults are estimated to have it, too — either having grown up with a diagnosis or being diagnosed later in life, if at all.
ADHD doesn’t discriminate by gender or race, but White boys are still more likely to be diagnosed and treated for the condition than anyone else. Experts and advocates say this leads to an inequity in care that hurts girls of any background and children of color of any gender.
In the past few decades, mental health experts and researchers have started to understand how ADHD manifests differently depending on gender, as girls tend to seem more inattentive and forgetful while boys tend to seem more hyperactive and disruptive. The reasons Black children and ethnic minorities are overlooked range from racial bias in schools and lack of access to care, to stigma and distrust of educators and health providers based on past discrimination.
Paul Morgan, director of the Center for Educational Disparities Research at Pennsylvania State University, is the lead author of multiple studies showing that the disparities in school start early. By kindergarten, Black children in the United States are 70 percent less likely to receive an ADHD diagnosis than otherwise similar White children.
A 2016 study found that, by 10th grade, White children are nearly twice as likely to receive a diagnosis for ADHD than Black children. The study’s lead author, Tumaini Rucker Coker, head of general pediatrics at Seattle Children’s Hospital and a top researcher at its Center for Child Health, Behavior and Development, said that while her study didn’t look at underdiagnosis of Black girls, Education Department data shows telling signs of racial and gender discrimination in diagnosing ADHD: Black girls are six times more likely to be suspended from school than White girls.
Coker explained that behavior as common as talking back in class could have wildly different consequences, depending on how it is interpreted. For Black girls, it is often viewed as “intimidation” of a teacher.
“When there’s ‘bad behavior’ and you’re a White girl, you get all the benefit of the doubt,” Coker said. “On the opposite spectrum, you get zero benefit of the doubt as a Black girl.”
Over time, studies have shown that ADHD, especially in girls, can lead to increased rates of anxiety and depression, risky behavior, drug use, self-harm and suicide attempts. Researchers and therapists said they are especially worried about those undiagnosed or undertreated.
Being diagnosed and treated, on the other hand, has many upsides. Medication, therapy and even behavioral training for parents have proved to be highly effective in managing ADHD. But access to such resources depends on not only a diagnosis but also trust and buy-in from families.
René Brooks, who lives outside Gettysburg, Pa., was diagnosed three times — twice as a child, when her school tested her without parental permission. Her mother rejected the idea of her daughter, who is Black, being labeled, distrusting a system she feared wanted to “drug up minority children.”
The third time Brooks was diagnosed, she was 25 and on the brink of losing her job at one of the biggest insurers in the state because she could not keep up with the workload. After starting medication, 18 years after her first diagnosis, she said her brain felt like it “switched on” and she was able to be more productive than she ever imagined possible.
Still, as a Black woman with ADHD, Brooks felt alone. “It’s very isolating to sit at that intersection because no one’s there, or so we thought,” she said.
She started a blog called “Black Girl, Lost Keys,” which educates and empowers Black women with ADHD, and created Unicorn Squad, Black People of Marginalized Genders With ADHD, a private support group on Facebook with more than 2,200 members who share the feelings that come with the diagnosis.
Aaron said finding the Facebook group and talking with other Black women with ADHD during the weekly virtual meetings made it easier to accept her diagnosis. They also commiserate about the all-too-common racialized slights known as microaggressions that she and others face — whether it is being dismissed for showing emotion as an “angry Black woman” or having to fight for accommodations at school or being doubted at pharmacies when trying to fill prescriptions for stimulants that treat ADHD under the assumption they’re addicts trying to misuse the controlled substances, sold under brand names such as Adderall, Concerta and Ritalin.
Loucresie Rupert, a child-adolescent psychiatrist, adult ADHD coach and mental health advocate in Winona, Minn., also blogs about her personal experience with ADHD. She recognized her symptoms during medical school — problems studying, missing appointments, forgetting to pay bills — and was officially diagnosed during her medical residency, after failing a two-day-long licensing exam. The latter was a wake-up call. “I’ve never failed at anything in my life,” Rupert said.
As a Black woman, Rupert said she understands why her Black female patients are so grateful to find her. It’s hard enough to find a local psychiatrist who is covered by one’s insurance and specializes in ADHD, let alone a Black female psychiatrist who has ADHD herself.
Rupert said she, too, sees a Black female psychiatrist, who shares some of the same experiences and sensitivities, which makes a big difference. “It’s taken my healing and my ability to function to the next level, because you don’t have to explain as many things.” For example, when discussing police brutality, she said, “I don’t have to spell out how exhausted or tired or traumatized I am.”
Coker and Morgan agreed that culturally and linguistically sensitive screenings are key to getting more people diagnosed. Also critical: culturally relevant groups such as the Unicorn Squad.
A year and a half after being diagnosed with ADHD, Aaron said the treatment she has received — including medication, therapy and strategies for learning and organization — has changed her life. She has since found out she also has dyslexia and a language processing disorder, two learning disabilities that commonly occur with ADHD.
Far from flunking out, she is now thriving academically and publishing her research on Martian minerals. She wants to help other Black women going through similar struggles, just as Brooks’ Unicorn Squad helped her.
“When you start receiving treatment, the biggest impact is to your self-esteem, because you’re no longer concerned that you’re just lazy, or that you’re just unmotivated,” said Brooks. “You know this is a problem, and problems have solutions, whereas character flaws do not.”
— Kaiser Health News
This article was provided by Kaiser Health News which produces in-depth journalism about health. It is a program of the Kaiser Family Foundation, an endowed nonprofit organization that provides information on health issues to the nation.