Privilege plays a huge role in getting an ADHD diagnosis

For more than two decades now, the prevailing cultural narratives around ADHD (attention-deficit/hyperactivity disorder) centered on suspicions of overdiagnosis and overtreatment. A significant rise in ADHD diagnoses in the ’90s sparked concerns that continue to this day about overmedicated young boys or affluent (often white) parents allegedly gaming the system by paying for unnecessary diagnoses that let their kids take advantage of special accommodations intended for students actually impaired by the disability, like extra time on tests.

But often, what these oversimplifying cautionary tales leave out is how many marginalized and underprivileged people are left chronically underdiagnosed and undertreated.

While methods vary, a majority of studies on the topic find significant demographic disparities in whose ADHD symptoms get missed or improperly diagnosed and treated.

“Privilege plays a huge role in getting an ADHD diagnosis,” said Dr. Tumaini Rucker Coker, an associate professor of pediatrics at the University of Washington School of Medicine who researches racial and ethnic inequities in childhood ADHD. “And on the other side of that privilege are all the disadvantages of not getting a diagnosis early on.”

Having ADHD (like any other stigmatized mental health-related diagnosis) is not a privilege. But as a prerequisite for medication, therapy, and other accommodations and services that help treat the brain disorder, access to the ADHD label can be essential. Being denied an ADHD diagnosis often makes the difference between successfully living with its potentially debilitating lifelong challenges, versus falling victim to the many serious risk factors associated with untreated adult ADHD.

In the 1990s, boys were diagnosed up to nine times as much as girls. Last year’s data from the CDC indicate improvement, narrowing the gender gap to only about twice as much. However, there’s almost no data, research, or discourse on potential diagnostic disparities among other gender minorities, like trans and non-binary folks. A 2020 study on gender dysphoria and neurodivergence underscored the need for more data on ADHD among these groups.

Meanwhile, a 2016 study from Coker reaffirmed longstanding findings that Black and Latinx children are the most underdiagnosed compared to their white counterparts. A 2013 study categorized Black girls as one of the most historically overlooked demographics of all. Meanwhile, a 2021 study suggested that Asian American children were also among the least likely to receive treatment.

Black girls’ with ADHD can be made to feel invisible.
Credit: vicky leta, mashable

Though there’s less data on rates of diagnostic disparity in adulthood, evidence of racial, ethnic, and gender inequities appear to still persist. Also, the excess costs of ADHD diagnoses and treatment in the U.S. can lead to class disparities, which intersect with ethnic and racial inequities, along with several other risk factors like lack of health insurance (or having Medicaid) and being part of a non-English speaking family.

“It’s hard to understate the impact of not identifying and treating these kids early on, or at least giving them an understanding of the disorder, of how it can affect them,” said Coker, speaking not only to her research but from her personal experience of raising two young Black sons with ADHD.

Untreated ADHD can feed into some of society’s worst race and gender-based inequalities and injustices. It has been associated with higher rates of mental illness, eating disorders, domestic violence, failed marriages, job instability, loss of potential earnings, addiction, and incarceration. Worse still, marginalized people have often been found to be more susceptible to these struggles.

“ADHD is a societal burden that not only affects the individual, but also our society,” said Dr. Patricia Quinn, a seminal researcher on the gender disparities of ADHD who co-founded the Center for Girls and Women with ADHD and co-authored many books on the topic. “While there’s no cure for ADHD…when it comes to normalizing brain functioning, lowering impairment, avoiding fallouts later in life, secondary consequences and complications like depression, anxiety, failing out of school, losing jobs, all that — we need to get better at diagnosing and treating it early.”

ADHD diagnosis disparities are complex, requiring equally nuanced solutions researchers are still in the process of figuring out. But immediate remedies include spreading knowledge about the disorder, raising awareness, and destigmatizing a diagnosis.

Who slips through the cracks of an ADHD diagnosis, and why

Though systemic racism and sexism are a source of many medical inequalities, the implicit and unconscious biases baked into our institutions appear to play a particularly significant role with ADHD.

As a brain disorder primarily assessed through a patient’s behaviors, the diagnosis is grounded in subjective measures that are susceptible to prejudice. Whether unconscious or conscious, from the teachers tasked with early detection to the medical professionals who make the judgment call, the problem of bias is at the heart of diagnostic inequity.

“If you look at the agreement between how parents and teachers see a child’s behavior, there’s better agreement for white children than children of color,” said Coker. “So there’s some interpretation going into observing these behaviors. And there are biases in those interpretations.”

That’s particularly worrisome because of how ADHD often causes difficulties with impulse control, emotional regulation, and distractibility, all of which typically lead to behaviors considered disruptive. The chronically undertreated are then also subjected to the biases of whoever decides if this “disruptive” behavior means they need help or punishment.

According to data from the Department of Education, Black boys were three times as likely to be suspended or expelled than white boys in the 2011-12 school year. Black girls were six times as likely.

“I’m not saying all those kids had ADHD. But oftentimes, when we don’t treat ADHD properly, the resulting behaviors are going to be interpreted differently. And clearly, there’s something about Black girls versus white girls where their behaviors are more often being interpreted as requiring harsher punishment,” Coker said.

Add to that the estimated 26 percent of the prison population believed to have ADHD, and a connection to the larger School-to-Prison pipeline starts to look probable.

“Entire populations [are] ruled out and discriminated against for not fitting a model that excludes their symptoms and struggles in the first place.”

“A lack of appropriate access to diagnosis and treatment for ADHD might help at least partially explain achievement gaps in schools, or School-to-Prison pipeline issues around school discipline,” said Dr. Paul Morgan, a professor of education and demography at Penn State University, who published a study on racial and ethnic disparities in ADHD. “All of that can lead to divergent life-course trajectories, like, say, involvement in the juvenile justice system instead of the mental health system over time.”

By and large, though, gender remains the most significant source of diagnostic disparities across all races and ethnicities.

Quinn traces the gender gap back to the very origins of ADHD’s medical definition. Until quite recently, it was evaluated exclusively as a hyperactivity disorder, ignoring all the symptoms common for what is now labeled inattentive type, which presents through more dreamy forgetfulness, slower processing, and distractibility rather than impulsivity. To this day, the criteria for having ADHD fails to include all the biological, hormonal, environmental, and sociocultural factors that can radically change the way the disorder manifests in an individual.

“The profile for the disorder was based only on the symptomatology seen in boys,” said Quinn. “If your diagnostic rating scale and criteria only include boys, then only boys get diagnosed. Then it becomes self-perpetuating, with entire populations ruled out and discriminated against for not fitting a model that excludes their symptoms and struggles in the first place.”

As it turns out, research suggests that the prevalence of ADHD is pretty equal across sex. But hyperactivity is far less common in people assigned female at birth. When it does occur, it tends to manifest in more subtle behaviors considered more socially acceptable for their gender.

“If a girl is messy, disheveled, roughhousing, forgetful, too loud, disruptive, chatty — there are all these negative cultural connotations to shame her for it.”

“There’s no such thing as ‘boys will be boys’ for girls with ADHD,” said Quinn. So, for example, when a white boy with ADHD misbehaves with impulsive outbursts of anger in class, he’s the most likely to get the benefit of the doubt that it’s from a condition he can’t control. “But if a girl is messy, disheveled, roughhousing, forgetful, too loud, disruptive, chatty — there are all these negative cultural connotations to shame her for it.”

In general, social stigmas and expectations often lead women and girls to internalize their symptoms more. They blame themselves for their under-recognized difficulties, leading many to get depression and anxiety disorder diagnoses (from clinicians who still often miss their ADHD).

Untreated ADHD can turn women into masters at masking the disorder, too, working overtime to avoid being perceived as lazy, ditzy, bitchy, or over-emotional. Unfortunately, that only makes their ADHD even harder to identify, with many clinicians still wrongfully perpetuating the outdated myth that overachievers can’t qualify for a diagnosis.

All these stigmas are only exacerbated for women of color caught in the intersections of racism and sexism. For them, the negative stereotypes that stigmatize their symptoms range from the angry Black woman to the lazy, uneducated Latina.

“When you grow up as an ethnic minority, you’re told from a young age that you’re going to have to work twice as hard as your white counterparts. When that’s so ingrained, you can’t afford to fail, you can’t afford to let people see you sweat,” said Rach Idowu, a 27-year-old Black woman from the UK who recently started the popular Adulting with ADHD newsletter after getting diagnosed in 2020.

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Idowu always knew she struggled with procrastination and focus, but overcompensated by excelling at the multitude of jobs she’d jump into after impulsively quitting or moving.

“There’s this perfectionist mindset you adopt because you develop this massive fear of failure. You don’t want to do something that’s going to disappoint your family, make mistakes people will look down on you for. You mask so much that you don’t even realize what you have is ADHD. But the perfectionism so easily spirals into imposter syndrome, too.”

After watching a documentary on ADHD in 2018 that opened her eyes to all the misconceptions she thought excluded her from the diagnosis, Idowu requested her general practitioner refer her for an assessment. The doctor initially refused, insisting Idowu couldn’t have ADHD because she didn’t fit the symptoms designed around hyperactive white boys. Upon her insistence though — and after two lengthy psychiatric assessments over two years —Idowu finally got an official diagnosis.

In America, people of color (especially Black people) also face a litany of hurdles. Aside from medical biases, communities of color are understandably hesitant to trust institutions that have been a source of oppression.

“When you already know you’re being misjudged by the medical system, by teachers, by law enforcement by whatever so-called authority figures, the last thing you want to do is show weakness in front of them,” said René Brooks, founder of the beloved resource blog Black Girl Lost Keys, and who started treatment for her ADHD later in life. “You can’t be vulnerable, you can’t ask for help, because they’re not using the information you give them to help you. They’re using that information to penalize you.”

“You mask so much that you don’t even realize what you have is ADHD.”

Brooks now boasts a network of trusted medical professionals. But her journey spanned a lifetime, and reveals how the ADHD label is only a privilege for a select few.

Against the odds, Brooks was actually diagnosed not once but twice as a kid, at 7 and 11 years old. Each time, though, her well-meaning mother rejected it, since “it was back in the ’90s when the prevailing attitude — especially in communities of color — was, oh, now they’re diagnosing your kids with ADHD…of course they’re going to say something’s wrong with your kid.”

Like Idowu, Brooks was an overachiever with straight A’s. So when the doctors failed to educate her mother properly on what ADHD actually was, it left her to assume that this highly stigmatized new label was yet another authority figure misunderstanding, diminishing, and discriminating against her child. Even after Brooks embraced her third diagnosis at 25, going on to build a successful career in helping others with the disorder, family members still urged caution. One warned that being so public about her mental health struggles online could ruin her life because employers might view the diagnosis as disqualifying (which is not an unfounded concern).

Counterintuitively, some questions still remain about whether communities of color are actually being misdiagnosed with ADHD.

A recent 2020 CDC survey made headlines for finding that, for the first time ever, Black kids were more likely than white kids to be diagnosed with it. But Morgan emphasized this statistic’s limitations in capturing the full scope of the issues.

For one, the CDC relied on parents’ self-reporting, with a question that lumped all learning disabilities in with ADHD. For another, there could be legitimate reasons why the prevalence of ADHD (or at least its symptoms) may potentially be higher among communities of color.

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“Black and Hispanic children are more likely to grow up and experience poverty than white or Asian children. And poverty increases your exposure to risk factors that might be related to disability,” Morgan said.

For example, lead poisoning is one environmental factor that disproportionately impacts communities of color, and some of its symptoms (like lack of impulse control) can look like ADHD. Poverty, and by extension race and ethnicity, are also connected to higher rates of adverse childhood experiences and PTSD, which researchers are finding to have a correlation with ADHD. Whether this is because the symptoms of PTSD can be mistaken for ADHD or if PTSD is actually a predisposition for ADHD remains to be seen, though.

Regardless, Morgan said, “We want to make sure that our regimens for diagnosis and treatment are being equitably provided, including to children of color who may have unmet needs.” So the fact remains that while children of color have as much (if not more) clinical need as white children, they are not getting equal access to treatments that would help determine whether or not their impairments are related to a disability like ADHD.

Further, Coker said, “For the most part, when there is an overdiagnosis or overmedication, particularly of Black children and youth, it is not ADHD specifically, but more crossover behavioral disorders like Oppositional Defiant Disorder (ODD) or Conduct Disorder (CD).”

ODD and CD are two even more subjective diagnoses, with arguably more potential for implicit biases because they’re classified as disruptive behavioral (as opposed to neurological) disorders. They refer to defiance of authority figures and social norms.

An unexpected new equalizer

What all these valid questions and concerns reveal, though, is just how much institutionalized adversity stands in the way of equal access.

“Black and brown parents aren’t too superstitious or goofy to treat their kids. What they’re doing is protecting their children from the unknown, which is what good parents do,” said Brooks from Black Girl Lost Keys. “There’s a lot of fear there around mental illness. And there’s good reason for it. Because when you’re going into unknown territory, how can they help you? How can they keep you safe?”

Diagnosis is not the final hurdle for those who are also chronically under-treated for the disorder, either.

“Seeking diagnosis can other you from your own community.”

“When you’re part of a marginalized community, the community is what keeps you safe. But seeking diagnosis can other you from your own community. So in order to pursue your mental health, you have to in some ways leave the community behind,” said Brooks. “And that’s really frightening. It is really isolating.”

It’s the reason why she started Black Girl Lost Keys in the first place, to create a community and safe place for people of color starting on their journey. Encouraged by her example, Brooks’ own mother recently got her own official ADHD diagnosis.

Brooks and Idowu are both part of a social media movement where creators of color bypass institutionalized biases and exclusion by finding their own way to show up for one another. Though online resources like Black Girl Lost Keys have been around for longer, the recent surge in ADHD discourse online has helped disrupt some of the fundamental inequalities around ADHD diagnoses.

“Growing up, I knew the term ADHD, but genuinely didn’t think girls could have it,” said Idowu. “I thought it was something only naughty boys had.”

But with the rise of social media, folks who’ve been historically excluded from seeing themselves within the diagnosis pool are now finally getting representation in the ADHD community. But leading that charge isn’t always easy.

When she first started Adulting with ADHD, Idowu’s avatar was anonymous, with no distinguishing features because of how frightening it felt to simply have ADHD publicly while being Black and a woman. Then a plethora of other Black women started messaging her to say how transformative it was to realize the person behind the screen looked like them, and could speak to their unique struggles. So she changed her avatar.

“I want them to know that the diagnosis isn’t like a death sentence for people like us. It’s a restart — a way of understanding yourself better, of reintroducing yourself to society.”

Some have voiced concerns about the surge in online discourse potentially inviting a dangerous amount of self-diagnosis. At times, this concern can feel like more gatekeeping, another way to invalidate the ADHD-related experiences of underprivileged and underserved communities.

“As long as lack of access to healthcare, education, representation — or just not being able to afford the diagnosis — are issues, people will have to rely on self-diagnosis,” said Idowu.

Online mental health resources will always be an imperfect solution, especially with the misinformation rampant on social media (particularly on ADHD TikTok).

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“What worries me is this notion that’s starting to take over on social media that’s like, ‘These doctors don’t know what the fuck they’re talking about anyway, therefore, my opinion is just as good.’ Your opinion is valid — it’s a necessary part of the process. But there’s a reason we have clinicians,” Brooks said. ADHD symptoms can look like or even come clustered with a lot of other disorders that require different kinds of treatment, like PTSD and bipolar disorder. “We can’t YouTube our way through our mental health. It’s too important. But we’re all in the self-diagnosis bucket at some point when we’re questing, looking for information. That’s an OK place to start. But it would be to your advantage to not stay there.”

Ultimately, Coker said, “If people are seeing more depictions of folks who look like them with ADHD, and identifying the symptoms in themselves, I don’t see a problem because they still have to bring it to the attention of a healthcare provider to receive medication or treatment… Maybe they get their diagnosis wrong. But now they’re talking about it, they’re seeking out help.”

Above all, people who face gender and race-based stigmas for ADHD symptoms finally feel less alone — perhaps even less othered within their own community.

“There are so many people with ADHD who need self-diagnosis. They lost their jobs, their marriages were ruined, they fell into addiction. And just knowing that they have ADHD, that they’re not broken, has really helped them take the steps to start recovering from these traumatic events,” said Idowu.

As Idowu became increasingly visible online, she felt compelled to face her fears of disclosing her ADHD diagnosis to her manager at a high-pressure job. To her relief, the manager was incredibly supportive, asking what she could do to improve and help accommodate her ADHD. So now, when she needs extra time because of time blindness or she’s forgotten a detail here or there because of distractibility, she doesn’t have to hide it. She can explain it’s because of a condition outside her control.

“I don’t need to feel so guilty all the time. I don’t need to feel all this shame,” said Idowu. She’s still early on in her ADHD journey, with a lot more to discover. “But it feels like a weight has been lifted off my shoulder. I’m starting to relearn myself again.”

If you want to talk to someone about your mental health, Crisis Text Line provides free, confidential support 24/7. Text CRISIS to 741741 to be connected to a crisis counselor. Contact the NAMI HelpLine at 1-800-950-NAMI, Monday through Friday from 10:00 a.m. – 8:00 p.m. ET, or email [email protected] for more mental health resources.

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