ADHD in Black children: “In It” with Dr. Tumaini Coker

What are the unique challenges Black families face when it comes to having kids with ADHD? What does it feel like to not see your family reflected in any of the resources designed to help? 

Hosts Amanda Morin and Bob Cunningham speak with Dr. Tumaini Coker about her unique perspective as a researcher, pediatrician, and mom to twin boys with ADHD. Dr. Coker is an associate professor of pediatrics at the University of Washington and director of research at Seattle Children’s Center for Diversity and Health Equity. 

In this candid conversation, Dr. Coker talks about the barriers around ADHD diagnosis and treatment in communities of color. And she shares why she hesitated to get her own sons diagnosed.

We also hear from a college student, Xavier, about how his ADHD diagnosis shaped who he is today.

Listen in. Then:

• Learn more about Dr. Coker. 

• Check out this video of poet and activist LeDerick Horne talking about racial stereotypes and the pressure to be “flawless.”

Subscribe to In It on iTunes, Spotify, Stitcher, or wherever you listen to podcasts.

Episode transcript

Amanda: Hi. I'm Amanda Morin, a writer and in-house expert for Understood.org and a parent to kids who learn differently.

Bob: And I'm Bob Cunningham. I'm a career educator and a parent. And I'm the executive director for learning development at Understood.

Amanda: And we are "In It."

Bob: "In It" is a podcast from Understood. On this show, we talk to parents, caregivers, and sometimes kids. We offer support and advice for families whose kids are struggling with reading, math, focus, and other learning and thinking differences.

Amanda: And today, we're talking about why it is that African American and Latino kids are often underdiagnosed and undertreated when it comes to ADHD.

Amanda: So, Bob, let's start with a few statistics. The CDC says white children are diagnosed with ADHD at a rate of about 11.5 percent. Do you know what the rate is for African American children?

Bob: Let's hear it.

Amanda: Around 8.9 percent. And the rate for Latino children is even lower: 6.3 percent. That's really reflective of what I hear from parents in those communities who are sort of mistrustful of getting a diagnosis.

Bob: Yeah, it's really reflective of my experience. It's not uncommon for me to work with professionals who make lots of problematic assumptions about kids of color and their families. Expectations get lowered pretty unfairly, and because of the lowered expectations, learning and thinking differences just get missed.

Amanda: So, we wanted to dig a little deeper to try to understand what's going on here.

Bob: Hi, Tumaini. Can you hear us?

Dr. Tumaini Coker: I can hear you.

Amanda: And that's why we were excited to find Dr. Tumaini Coker.

Bob: Dr. Coker is a pediatrician at a community clinic in Seattle, Washington.

Amanda: She's also an associate professor of pediatrics at the University of Washington School of Medicine. And a lot of her research focuses on how we can improve primary care for families in low-income communities.

Bob: One area she's really looking into is how we can tackle racial disparities in the diagnosis and treatment of ADHD.

Amanda: She's also a mom. She's got a daughter and twin sons. And both of her boys have been diagnosed with ADHD. And we wanted to talk to her about all of that.

Bob: Tumaini, how did you get interested in communities of color and ADHD.

Tumaini: You know, I think my interest really started when my boys started preschool. I pretty much knew that at least one of them had ADHD. I could kind of see it. And so that experience of figuring out how to get a diagnosis, how to get treatment, how to bring the rest of my family on board. I think that experience for me as an African American mother, having African American boys with ADHD and most of my patients in primary care, I'm at work at a community clinic.

So most of my patients are publicly insured and many of the families don't have a lot of financial resources. And so I know that I have a lot of privilege in the way that I'm able to access care. And it's hard for me. So then now it kind of gives me an insight into what the families that I take care of go through.

Amanda: Can you tell us the story of how you got to that diagnosis?

Tumaini: Yeah. So, I kind of thought early in at least one of them, the one that has a more severe inattentive ADHD, and in kindergarten and first grade, you know, it was workable with the teachers and kind of just instinctively kind of managed his behavior in the classroom. And he was really more inattentive. His twin brother was more on the hyperactive side.

But I recall really distinctively in I believe it was second grade, I was doing like a morning drop-off. And one of, the son who has a more severe kind of inattentive ADHD, the teacher stopped me and she said, "I know you're a pediatrician, so I'm sure you know this already, but your son is probably the most inattentive child I've seen in my 20 years of teaching."

Tumaini: Oh, my God. It just hit me so hard because we had just been trying to, you know, just get through. But when she pointed that out to me, it just hit me like a sack of rocks. And so at that point, I talked to my husband. I said we really have to do something. I think he's kind of more... I was more shocked, although I knew it. He was more offended. I think that he would say that.

And I think this is a little bit of, if I go back to at least in my family of African American family, culturally, what ADHD, you know, that term signifies. You know, I have a negative connotation. People see it as a label that the educational system puts on Black boys to hold them back. And so I knew that to get the diagnosis, it would be better to go to a psychiatrist for him. I think he needed to see a specialist to really bring him on board.

Amanda: Did both of your twins get diagnosed at the same time?

Tumaini: They did.

Amanda: Oh my goodness.

Tumaini: They had an appointment that same day with the psychiatrist.

Tumaini: And I got my husband to agree to start them on medication. And that was even really interesting. So that one boy, the one who was more hyperactive and less inattentive, you know, first medication he tried was great. You know, his side effects were fairly minimal. And he was the same kid. He just, you know, was able to stop being a little chatterbox in class and focus.

Tumaini: Second kid. You know, we went through, I think, four medications in the first month or so with a psychiatrist because he had a lot of emotional ups and downs with many of the medications. We had to keep trying new ones. And I could see for my husband... like for me, I kind of understood that, yes, this is a process. But for my husband, it was hard. Because I remember one time, one of the medications, the emotional ups and downs with it were really bad. And he's like, why are we doing this to our son? You know, and I said it's going to be better. You know, it's just this one. And so anyhow, we finally got to one that worked for him.

Amanda: Did you share the diagnosis with friends and family, and how did they respond?

Tumaini: So, I have. And it's interesting. The one that is inattentive, no one was surprised. Because it is obvious, like he, you know, he's kind of always in the clouds. And also just has this, you know, you'll tell him something and the next second, he doesn't even know what you just told him to do. So, yes, I think as he got older, people go, OK. Yeah, that makes sense. The other one, who is more hyperactive, you know, his inability to focus is a little bit more internally than externally. So you can't look at him and tell that he's not able to focus. And so I stopped telling people that he had ADHD.

Tumaini: Because, you know, if I'm really honest with myself, I think it's hard for people to understand that both kids could have ADHD and they could be so different. So it's almost like I felt like if I said, oh, yeah, both the twins have ADHD, they'd almost doubt me. You know, I had a fear that they would think, oh, you're just overdiagnosing them.

Bob: Right.

Tumaini: How could both possibly have ADHD? And plus I see him and he's doing fine and this kind of thing. And so in a way, it became kind of like a way to protect myself from external criticism or my perceived.

Amanda: I feel that. Yeah.

Bob: Yeah.

Amanda: I totally get that.

Amanda: You said something that really struck me, which is in your African American family, it's something that is not talked about. Can you sort of walk us through some of the reasons that that is the case?

Tumaini: So I think one big reason is, you know, you go back and if you look at the educational literature, there are a lot of inequities in the way that Black children are treated in the public school system. Right? And those go from punishment, you know, being kicked out of school. The same behaviors that white children exhibit, Black children are more likely to be more harshly punished in schools. And what I mean by harsh punishment is, you know, things like suspension and those kinds of things that just don't happen, you know, they happen more so for the same behaviors in Black children.

And so with that as a backdrop, that's, I think the context of where Black families have to interact with the school system. And that in a way, you're, you have to be kind of on the defensive. Right? And not knowing is this happening because the school system really cares about my child, or is this happening because they see him as a threat because he's a Black male?

Bob: I've had a friend describe it as just a fancy way for doctors and teachers to again point out that my kid wasn't behaving.

Tumaini: Yeah, I've heard things like that as well. I think for many parents, they may hear that at first. And I could see this with my husband in the way that, you know, he kind of was able to start seeing that this really is something that is significant. So obviously, in a preschool-age kid, yes, developmentally appropriate to not be able to sit still, to be inattentive, to have poor impulse control. But as the kid gets older and academically, they're required to do more in terms of attention and impulse control, and, you know, sitting still, and they're not able to keep up with their peers and that.

Then I think for parents, as a kid gets older, they can start seeing that what before they kind of, I don't want to say "dismiss," but attribute to that. You're just trying to point something that's wrong with my kid. And this is another way to kind of, you know, find a way to hold my kid back or these kind of things. When they get to third grade and over, then it's like, OK, yes, they can start seeing that their child does need some additional assistance to be able just to make it through school.

You know, one other thing I'll point out is, like, both can be true. Right? It can be true that, yes, the child has ADHD, but can also be true that there's a significant amount of implicit bias that the teachers or the school system is putting on that child. And that's really tough place for a parent of a Black child to be. Because you know that there's some element of need educationally for that child. But then you also know that, yes, there's this element of racism, both structural and interpersonal racism, that's impacting the kid in school. And to navigate that and to figure out each day, you know, which is which, it's hard.

Bob: So, Tumaini's talking here a lot about how families deal with these complexities. We also got to hear firsthand from students. One of them is Xavier. Xavier was diagnosed with ADHD in about fourth grade. But he didn't get the help he needed for it until much later. In the meantime, the school's way of handling his troubles in the classroom were problematic, to say the least.

Amanda: Yep. Here's what Xavier remembers from middle school.

Xavier: I was, from early age, I was getting in trouble like constantly. Like detentions, suspensions, like I probably had detention like every other week. So they put me in a program. It was called the Power of Choice Program. And it was kind of like the bad kid program. It was sad to see, like everyone in the room looked like me, or like Hispanic.

But in this room, you could not leave the room. Like they would lock the door. And there was always like two teachers. And even for a lunch, like we had to go downstairs, walk in a line, eat like before the other kids. We used to call them mainstream kids. We had to go separately. We'd get our food and we have to go straight, straight back. So like we used to call it like jail, like we used to really say it, like we felt like we were in jail.

Amanda: Ultimately, Xavier was able to get the appropriate help for his ADHD and he's doing really great now. But think about all those years he lost because his symptoms were punished as bad behavior. Clearly just getting the diagnosis was not enough.

Bob: We also heard from Carlos. His parents are from El Salvador and hadn't even really heard of ADHD.

Carlos: I found out that I had ADHD when I was 21. And I do think what my parents went through definitely does play a part in how you even came to, like, my diagnosis as late as it did. So, my parents fled El Salvador. El Salvador had a civil war when they were growing up. So a lot of the things that we American kids or first-generation American, you know, people go through may not hold up as a comparison to anything that they went through. And I respect that.

But when it comes down to handling these issues, like mental health isn't at the forefront for a lot of Latinx families. It's just more so about like, OK, you got to go through the struggle, you got to make it through, you got to work harder. If it sucks, it sucks. But that's what life is about, type of thing. Like we work hard. That's like the sentiment. Right? It's funny because like, ADHD supposedly is like the most overdiagnosed health issue or difference in cognition. But like we as a demographic are underdiagnosed, and that actually holds a lot of people back.

Bob: So Tumaini, once an African American child is diagnosed with ADHD, have you seen disparity in the way that child then is treated, or the interventions that are attempted?

Tumaini: So, the best way for me to answer that question is from the, you know, data sets, and in the literature. Right?

Tumaini: So, in the literature, we know that Latino children and African American and Black children are less likely to both receive a diagnosis and then once having a diagnosis to be treated for ADHD, both medication and behavioral management. So, yes, that disparity exists. I think the reasons for it are multi-factorial.

You know, access is a big issue. Medication? I think. So we pick, we pull them apart. Right? Medication is something that I think really has to be explained to parents. A lot of the myths around medication have to be explained. And it does take a relationship, I think, with a provider for many families to, you know, take that step and say, OK, we can try medication. I think it's providers. We don't always do the best job of really getting parents to the point where they can try medication with the education and guidance around that.

But without that communication and just, you know, here's a medication, let's try it. You know, many parents, they see that first side effect, whether it's appetite suppression or inability to fall asleep at night, and there there's not really good communication about that. So, I think that's something that happens with medication. I think there's also a lot of misunderstandings about medication. You know, you can see a lot of that in social media. And parents just sometimes need time to understand kind of what's amiss, what's true, and what's workable.

Amanda: What do you think the biggest myth parents come in with about medication is?

Tumaini: Well, a few that I've, I think I hear the most is you know, it's like a way to control your child. You know, that hyperactivity is normal in kids. And this is just a way to control the kids. You know, and I think a lot of that, maybe to address that, it's like in that diagnosis part. Right? Really to get into that, what, you know, what are the teachers' reports, the parent reports?

And then I think that myth can kind of fall to the wayside that, you know, no, it's not medication to control the child's running around. It's medication to help them be able to function in school. So that's one myth I think I hear a lot. And then, you know, the other one is really about like addiction and dependence on medication.

And I think nobody wants their kid to, you know, they have ADHD and they're just going to get medication. That's not really good for anybody. Right? We know that kids do better when they have dual treatment.

Bob: What does dual treatment mean, Tumaini?

Tumaini: Yeah. So medication and behavioral management. When your kid just gets medication, OK, maybe they're doing great at school. But then at home that medication is worn off and it doesn't feel so great at home.

Amanda: Right.

Tumaini: And so the family chaos because of the ADHD continues. And I think that's where in primary care, you know, we falter somewhat because we don't really have the resources. So we can easily prescribe a medication. But if you don't have that parent training in behavioral management for school-age kids, it makes it really difficult for parents to feel like, OK, we're getting someplace with this.

Amanda: That's what I was gonna ask you about, actually. I was and ask you, how do we make sure that parents are getting what they need in terms of support? Because I think, you know, health care access becomes an issue.

Tumaini: Yeah. Many kids, depending on the state, can be insured. Right? So we can get medication for kids who have ADHD. The hard part is the parent training. And the reason why that's the hard part is not necessarily like the cost. It's getting to it. So many parent training interventions are, you know, at least seven sessions, sometimes in the evening, sometimes in the afternoon. You know, in a workday.

For a parent that's already under stress, that's, you know, maybe working an hourly wage, they have a lot of other stressors and not a lot of buffers in their life. That's hard to make. And if you had to pay out of pocket, forget it. And it can be quite expensive. And so this thing that is really so important for parents to be able to manage the household becomes inaccessible, in a way, as a treatment.

Amanda: That is a very sobering thought.

Tumaini: Yeah. And we haven't even talked about language. So let's say my first language is not English. Then I've got to find one in Spanish or Somali. That's really hard.

Amanda: You know, a lot of parents, myself included, when their kids are diagnosed, sort of have to reset those expectations regarding, you know, what their kids can do and how to best parent them. Did that play out in a certain way in your family?

Tumaini: I think so. But I think it took us some time as parents to get there. I think it wasn't really until parent training that I was like, oh, I can't expect them to do everything that I want them to do at this time. Right? So that took years, I would say, for me to come to the realization that I want them to do A, B and C and D without me telling them once, because that's what I did when I was a kid. And so even though intellectually I understand ADHD and they were actually being treated for ADHD, I would say it really wasn't until we took parenting training when we actually changed our expectations and changed our parenting to match the fact that they had ADHD.

Bob: Tumaini, did you find the parent training that you did to be culturally responsive or culturally sensitive?

Tumaini: No.

Bob: Do you think that's important?

Tumaini: It's very important. It's something that I want to be able to add to the knowledge base on what we know about and how we treat ADHD, as a clinician, as a researcher. So it's kind of one of the things I have on my to-do list in research and clinical care.

Tumaini: But no, I don't think it was particularly culturally sensitive. And I'll tell you why. You know, I grew up in a Black family on both sides. My parents are, you know, either, both spent most of their time in California, but their parents are from the South. And there is this implicit or even explicit idea that, you know, kids have to listen. You need immediate compliance.

Tumaini: There's no question: There's complete respect. Right? There's no room for disrespect. So that's the household that I grew up in. And there's a reason for that as growing up in a Black family. Right? If you go back to the Jim Crow era in the South and, you know, even though my parents were, spent most of their childhood in California, there's a lot of racism there as well. And so there was no room for noncompliance. You could be killed, like literally, for noncompliance.

Amanda: Yeah.

Tumaini: Right? So that is the kind of historical context, I think, that Black families come from and that's passed on generation to generation, that like, we have to have complete respect and compliance because you cannot go, during that time, into a store and even look at a white person with any kind of, you know. You have to have, your parent needs to say stop and you stop.

Tumaini: Right? So that's the historical nature, I think, that my parents come to parenting with.

Bob: Yeah, that's powerful.

Tumaini: And it's passed on. Right? It is.

Tumaini: And that's kind of the way, even though we live in some type of a different era now, some of those things are still really important. When I teach the boys about how to interact with the police. And I think the issue is that when we talk about that expectation of complete compliance and parenting, it's just giving the parent a window into, sure, you may want complete compliance, but part of parent training is, you know, ignoring behaviors you don't want and giving praise for behaviors you do want. Right?

And so that ignoring behaviors you don't want, it kind of feels contrary to that kind of generational way of parenting that I talked to you about. And that it was necessary. It wasn't like, yeah, it's not cultural, like Black people just like to have this kind of parenting. No, it was a necessity of survival.

Tumaini: But giving parents that ability to say, you could try this: ignoring behaviors you don't want, giving positive attention to behaviors you do want, and still be a good parent. And if you try it, you might actually see the results.

And I say for me that time that it really made, it like clicked for me that I had this kind of unconscious need to have this parenting that had been kind of passed down, was, we were in an Incredible Years class. And there's a video. And there's a Black woman with her daughter and they're like in the bathroom. And you could tell that the mom had just given her like some consequence. And the kid was kind of complaining about it and said to the mom, you know, "I hate you. I can't stand this," kind of thing. And I was like, what's going to happen now? Going to get another consequence? Is Mom going to get upset?

Tumaini: And she was calm. And the mom just said, "OK, but you're still having this consequence that I already gave you." You know, it was like she was cool as a cucumber.

Bob: And that was in your parenting class, that video?

Tumaini: That was in the parenting class. And it was so weird because it was at that moment, I was like, oh, I could do that. Like, that's OK. Because she did it. It is surreal that I would respond to that video in that way with all the, you know, kind of like, again, like this intellectual knowledge I have about, I know what's in parent training. I know what it says to do, but I needed to see someone who looks like me doing it to almost give me permission to.

Tumaini: Yes. You don't have to respond to everything that the boys say to you.

Amanda: That's great advice. The cool as a cucumber, if you can do that in your house. I am amazed.

Tumaini: Oh, not all the time, but I try my best.

Amanda: Tumaini, thank you so much for your time.

Tumaini: You're welcome.

Amanda: So, Bob, to me, talking to Tumaini was a really a humbling experience. I've spent my career in education. I know a lot about kids who learn and think differently. But I learned so much from her about the differences in different communities.

Bob: I learned so much from this whole episode. And I wish that we had the opportunity to interact with more folks who get things the way she does.

Amanda: I love that Tumaini is looking at tackling new things in her research, too, and I really look forward to seeing where she goes from here.

Amanda: You've been listening to "In It," a podcast from Understood. Our website is Understood.org, where you can find all sorts of free resources for people raising kids who learn and think differently, including a blog post that I wrote about the federal Department of Education's rules on racial disparity.

Bob: We'd also love to hear from you, especially if you have experiences like the ones that Tumaini or Xavier or Carlos described for us. Go to u.org/podcast to share your thoughts. That's the letter "U," as in Understood, dot O R G slash podcast.

Amanda: You can also rate and reviews on Apple Podcasts, iTunes, Spotify, wherever you get your podcasts. It's a great way to let other people know about "In It."

Amanda: And if you like what you heard today, please also tell somebody about it. Share it with the parents you know. And share this episode with the teachers that you work with.

Bob: You can subscribe to "In It" on Apple Podcasts. follow us on Spotify, or keep up with us however you listen to podcasts. Between episodes you can find Understood on Facebook, Instagram, Pinterest, or YouTube.

Bob: Or you can visit our website: U, that's the letter "U" dot O R G. Our show was produced by Julie Subrin and Sara Ivry. Mike Errico wrote our theme music and Laura Kusnyer is our executive director for editorial content.

Amanda: Thanks for being in it with us, everybody.

Bob: "In It" is a production of Understood.