When she was finally diagnosed with ADHD — after more than three decades of wondering what was wrong with her — Janel Dillard, of Clinton, Maryland, did what countless others before her have done: She threw herself into research. She watched online videos, read newspaper articles, and scoured the Internet for information on the neuroscience of ADHD and how she could best treat it. But from the moment she started her research, she said, she noticed something troubling: “I don’t often see people who look like me.”
Janel, 36, is African American, and she grapples with an uncomfortable truth: The face of ADHD in the U.S. is not black or brown, it is white — both in terms of the patients being diagnosed and the clinicians evaluating and treating them.
Evidence shows that people of color — black and Latino in particular — are much less likely to be diagnosed with ADHD, even though they show symptoms at the same rate as white people. And if they are diagnosed, they aren’t as likely to receive treatment — even though many studies show that it can dramatically help kids and adults manage symptoms.
“ADHD is not a privileged disability,” said Paul Morgan, Ph.D., professor of education and director of the Center for Educational Disparities Research, at Pennsylvania State University. “We don’t want a situation where ADHD is a condition for wealthy white families. We want to be helping children who have disabilities, regardless of their race or ethnicity. But what we’re finding is consistent evidence that white and English-speaking children are more likely to be identified — and that’s an inequity.”
The reasons for these disparities are complex, experts say, and correcting them will involve a multi-pronged approach that will most likely take decades — if not longer — to fully implement. But the ramifications of ignoring the problem are more severe. Properly diagnosed and treated ADHD can change the arc of a person’s life, helping her manage everything from schoolwork to relationships to career — critical areas where people of color often face already-strong disadvantages. Undiagnosed ADHD, on the other hand — particularly its high association with risky behavior, drug use, and depression — can be deadly.
The Case for Underdiagnosis
The question of under- or overdiagnosis of ADHD has long been up for debate, particularly since diagnoses started spiking in the 1990s. CDC data from 2011 to 2013 puts the rate of ADHD in childhood at 9.5 percent — a number that is sustained by white children, who are diagnosed at a rate (11.5 percent) that is significantly higher than that of their African American and Latino counterparts (8.9 and 6.3 percent, respectively). Critics and skeptics suggest that white children are being overdiagnosed (and overtreated) for ADHD, but the data may indicate otherwise.
Morgan conducted a well-regarded 2013 study that looked at more than 17,000 U.S. children. By the time the study’s subjects reached eighth grade, African American children were 69 percent less likely — and Latino children 50 percent less likely — to receive an ADHD diagnosis than their white counterparts. A follow-up study, in 2014, found that the disparity actually started earlier: Before they even entered kindergarten, African American children were 70 percent less likely to be diagnosed with ADHD than white children. Children whose primary language was something other than English — a group that includes many Latino children — were similarly underdiagnosed.
A study that came out last year may make the case for underdiagnosis most decisively. Published in September 2016 in Pediatrics, it found that black children in the sample population showed symptoms of ADHD at a significantly higher rate than white children, but were diagnosed much less often.
And the disparities don’t stop at diagnosis. The 2016 study found that, once diagnosed, children of color were much less likely to take medication. Just 36 percent of black kids and 30 percent of Latino kids who had been diagnosed with ADHD were taking medication, compared to 65 percent of white children. The 2013 study found similar results.
Claims of overdiagnosis weren’t supported by the data, researchers said. In the 2016 study, white children who didn’t show ADHD symptoms weren’t significantly more likely to be taking medication than similarly symptomless black or Latino peers. “White children in general were not significantly more likely to be taking medication,” said Tumaini Coker, M.D., an associate professor at the University of Washington School of Medicine, and the author of the 2016 study. “That really suggests to us that the disparities we see were more likely from the underdiagnosis and undertreatment of African American and Latino children — rather than the overdiagnosis and overtreatment of white children.”
Inequities in health care — particularly mental health care — aren’t new. In 2002, the Institute of Medicine released a report entitled “Unequal Treatment,” which found similar racial and ethnic disparities across the entire healthcare spectrum.
“Regardless of the condition you picked, you found disparities at every level of care,” said Natalie Cort, Ph.D., a clinical psychologist and teacher at William James College.
Undiagnosed physical conditions, like heart disease or diabetes, indisputably increase the risk of death, Cort said. But disparities in mental health care can have more subtle — but no less serious — consequences. “Mental health professionals’ misdiagnosis of minorities directly and indirectly contributes to racial and ethnic minorities being disproportionately represented in the criminal and juvenile justice system,” she said. She calls it the “misdiagnosis-to-prison pipeline.”
Missing the diagnosis is really just the start of the pipeline, she said. When teachers see ADHD behaviors — particularly those involving impulse control — without attributing them to a neurological cause, they often interpret them as defiance. Kids who are viewed as defiant or violent are labeled, said Cort — even if they’re not accurately labeled with ADHD.
“He’s going to be labeled as a ‘bad kid’ who is going to get suspended, and probably going to get expelled,” she said. “And being suspended once or twice is highly associated with becoming involved in the juvenile justice system.” Studies have estimated that up to 40 percent of inmates in the U.S. have ADHD — a rate that dwarfs that of the general population.
Not every person who has ADHD but hasn’t been diagnosed winds up in prison. But untreated ADHD has far-reaching effects — on self-esteem, social functioning, career progress, and overall happiness. Janel, who wasn’t diagnosed with inattentive ADHD until her mid-30s, can attest to that.
Looking back, she recalls having symptoms her entire life, but says that, without a diagnosis, she spent most of her childhood wondering what could possibly be going on. She couldn’t keep anything neat, no matter how hard she tried, and was constantly scolded for the “trail of things” she left in her wake. Even though she did her homework, she seemed to leave it at home instead of turning it in. In school, detention was a frequent punishment for talking in class, but Janel felt she couldn’t stop herself. “It got really out of hand,” she said.
Her parents were frustrated — with her messy room, her inconsistent grades, the constant calls from school. “They sat and watched me do homework — helped me do homework,” she said. “And now they’re getting called because I haven’t been turning in homework?” It was difficult for them to understand.
Despite all the calls, however, the school never suggested Janel be evaluated for ADHD — and no matter how often her parents tried to get her on track, Janel continued to struggle. “There was a lot of hiding,” she said. “It felt like there was something wrong with me.”
After she reached adulthood, little had changed. A promotion at work came with a slew of new responsibilities, and Janel felt herself crumbling under the pressure — not paying her bills, getting pulled over several times for the same broken taillight, leaving wet laundry in the washing machine for three days at a time. “It just started to feel like everything was falling apart,” she said. She needed help, and even though she wasn’t sure where to look, she decided to start with a therapist. “I basically went in and told her I felt like a failure as an adult.”
Her therapist suggested she see a psychiatrist to discuss the possibility of ADHD. She was at first reluctant, but eventually agreed. Once she got the diagnosis, she was relieved — at first. But that relief was soon tinged with anger and regret. “Why couldn’t I have known sooner?” she asked.
In many missed diagnoses, like Janel’s, there’s evidence that racial bias plays a role — particularly on the part of clinicians, who often rely on what are called “implicit biases” when evaluating a child’s behavior.
“As providers — like most Americans — we carry implicit biases,” said Cort. Implicit bias is the result of a lifetime of “classical conditioning,” she said. “If you present two stimuli simultaneously, and you do it repeatedly, your brain — which wants to be efficient — will make an association [subconsciously] that when one stimulus is presented, the other one should come next.”
A 1988 study of more than 300 psychiatrists found that, when presented with patients showing identical symptoms, they overwhelmingly diagnosed black men with severe conditions, like schizophrenia, while diagnosing white men with milder conditions, like depression.
“Those psychiatrists were probably all lovely people,” Cort said. But “they’ve also been exposed to the idea that, when they see black men portrayed on television, it’s usually in reference to some violent action—something negative.” On some level, “they think of black men as suspicious and dangerous and paranoid. That bias was impacting how they were reading the very same symptoms.”
Studies show that implicit biases in white Americans are at about the same level as they were in the 1950s — and that they’re still affecting how clinicians diagnose and treat patients.
“There is reporting that says health practitioners are more responsive to white and English-speaking families,” said Morgan. “Minority families have reported that practitioners can be dismissive of their concerns for their child, or less likely to solicit developmental concerns.” When doctors don’t ask the right questions — or rely on unfair stereotypes when interpreting behavior—many kids with ADHD don’t get the diagnoses they deserve, he said.
Bias on the part of practitioners plays a pivotal role in missed diagnoses, but it isn’t the only factor. Some of the disparity comes from the patients, in the form of community stigma about mental health or mistrust of the medical system.
Mental problems are considered “taboo” in some communities, Janel said. Her family mostly viewed her situation as a lack of willpower, particularly in light of the difficult history of African Americans in the U.S. “When my father was young, he went to segregated schools,” she said. “Previous generations ‘had it worse,’ and no one went to find a therapist — they just dealt with it and moved on.”
Plus, the issues that she struggled with the most — keeping track of homework, keeping her room clean, talking out of turn — weren’t seen by her family as problems that warranted professional help. “That’s something I just needed to figure out and get done,” she said.
Coker, who is black, and has twin sons diagnosed with ADHD, said there’s also a perception in some communities that “ADHD is a label that’s put on a child as a form of racism or bias” — which can lead to parents rejecting the diagnosis or refusing to accept treatment. “It’s hard to treat something that you think is just put on your child because of the color of [his or her] skin. And it’s hard to get family involved in the strategies you’re using to deal with your symptoms.”
Janel’s older brother, for one, was upset when she shared her diagnosis, telling her, “They’re just going to pump you full of drugs.” She would be “zoned out,” he said, under the influence of medications that have “horrible side effects and health consequences.”
His reaction isn’t uncommon — and it may not be unwarranted. Though stimulants have been proven safe over the long term, they’re not the only medication used to treat ADHD — and the other options aren’t always as benign. Studies have shown that children of color, including those with ADHD, are more likely than their white counterparts to be prescribed strong antipsychotics — even though the side effects can be severe and dangerous.
“If you’re seeing little black children or little Latino boys and girls as being potentially dangerous and violent, and you have a drug that can help manage some of that behavior, then you might reach for that drug,” said Cort. “Even though you know that antipsychotics take years off your life.”
All in all, minority communities may have a right to be suspicious of the medical establishment, Cort said. “The history is replete with minorities being deliberately harmed” by researchers —the Tuskegee Syphilis Experiment, in which African American men were intentionally infected with and denied treatment for syphilis, is perhaps the most notorious example. “The cultural mistrust is based on really, really egregious historical wrongs in the field — and that makes it hard for people to approach the field.”
The Frog Pond Effect
Years of formal and informal segregation, redlining, and other discriminatory practices have led to vast disparities in the U.S. school system — disparities that, again, hit children of color the hardest.
“Children who are racial and ethnic minorities are more likely to be exposed to poverty,” Morgan said. Wealthier schools have access to better resources — meaning the achievement level is generally higher than it is at poorer, under-resourced schools. This plays into something called “the frog pond effect,” which influences the likelihood that a child will be identified for special education services.
There are two factors to the frog pond effect, Morgan said. “One is the child’s own behaviors or academic achievement — how he or she is doing in a classroom individually. But another is the context in which the child is being evaluated.” That means that in a school dominated by high-achieving kids, a child with behavior or attention problems will stick out like a sore thumb. But in poorer schools — those that are overcrowded, understaffed, and underperforming — a similarly struggling child wouldn’t be as noticeable. In other words, Morgan said, where the child is attending school matters when it comes to ADHD diagnosis — even though, in a perfect world, it shouldn’t.
“From a clinical standpoint, it should be irrelevant,” he said. “The disability criteria is set at the state and the federal level, and those are the benchmarks which should be considered — not how your school is doing.” But it plays a part anyway, he said — and children at poorer schools pay the price.
Insurance also plays a role. Children of color are more likely to have public insurance, Coker said, which can make getting an ADHD diagnosis harder.
“If you’re dealing with Medicaid, you may need to use a community mental health center,” she said. “That waiting list is really long — it could be months before you even get assessed.” Behavioral therapy is hard to access under Medicaid, too, meaning that, even if these families get a diagnosis, the only treatment they may be offered is medication. “Not every family is going to agree to medication right away,” she said. “It’s one thing to give the diagnosis and the offer of medication, but another to give a diagnosis and to offer resources to help the family understand what [ADHD] is and why it’s happening. If you make a diagnosis and you can’t help, that’s an issue.”
The good news, according to Morgan, is that “we have ways to help children with ADHD. We don’t want it to be the case that only some kids are getting those treatments.” Correcting the disparity will require schools, doctors, and communities to work together. (See “Fixing the System” in the sidebar for potential solutions.)
No proposed solution can make a dent in the problem if the doctor-patient relationship — or the teacher-parent relationship — lacks trust, Cort said. After hundreds of years of racialized history, trust won’t come overnight, but it can be improved by diversifying the educational and medical communities, which remain overwhelmingly white. A 2016 report by the Department of Education found that only 18 percent of U.S. teachers are people of color, while nearly 90 percent of mental health professionals are non-Hispanic white.
William James College, in Newton, Massachusetts, where Cort teaches, is leading the charge toward diversifying the mental health field by pioneering programs focusing on the mental health of those of Latino or African descent. Cort herself is the director of the Black Mental Health Graduate Academy, a mentorship program that aims to develop a group of black clinicians who can be “present and powerful in the field,” she said.
“It’s really hard to push back against implicit bias if you don’t actually have something to challenge it,” she said. “We need more people of color in the field — by our presence, we challenge bias.”
Janel agrees. She’s had her ADHD diagnosis for just over a year, but in that time, most real-life people with ADHD that she’s come across have been young white boys. “When there are women, they’re not usually of color,” she said. More people of color are needed “to raise awareness of what ADHD is and dispel some of the stereotypes about it. It might look a little bit different, when you put it in the context of gender or culture, [but] people of color are affected just as much.”