Challenges in ADHD Care for Children of Color – Part 1
Podcast Date: January 29, 2020
- Learn the barriers to evaluation and treatment that exist in healthcare and the school system for African-American children.
- Understand the challenges for individuals who are not accurately diagnosed or treated.
- Learn the factors that can increase disparities in diagnosis and treatment of ADHD.
- Understand how African-American parents can advocate for their children with ADHD when dealing with a culturally insensitive school or medical clinician.
Melvin Bogard: You're listening to the All Things ADHD podcast. Hello, I'm your host, Melvin Bogard. My guest today is Dr. Roberto Olivardia. Welcome.
Roberto Olivardia: Thank you for having me.
Melvin Bogard: So, please tell me more about yourself and your work.
Roberto Olivardia: Sure. I am a clinical psychologist and a lecturer in the department of psychiatry at Harvard Medical School in Boston, Massachusetts. I specialize in the treatment of ADHD as well as working with eating disorders, obsessive-compulsive disorder, and body dysmorphic disorder. I see patients of all ages and specifically with ADHD, I see a lot of people with ADHD and comorbid disorders like ADHD and binge eating disorder or bipolar disorder, substance abuse. And I'm really happy to be here in this podcast.
Melvin Bogard: We are happy to have you. So today we're discussing challenges in ADHD care for children of color. So, my first question is, do cultural barriers exist in the healthcare and school systems when correctly identifying ADHD in African-American children? And if so, how do we change the narrative?
Roberto Olivardia: Absolutely. I mean, this is such an important topic. In the research literature, studies actually show that ADHD can be either very underidentified and underdiagnosed or overdiagnosed and for all the wrong reasons. In the sense that, so we take underidentification. What we know is that there are a lot of barriers that get in the way for children of color—having insurance issues, being uninsured, underinsured. A lot of times school systems are the first, sort of the gatekeepers of first identifying students. And of children of color who might be in school systems that may not be particularly adequate or staffed or have the specialists to make those kinds of identifications. A lot of times what studies show is that children of color are sometimes more likely to be diagnosed with another issue and not ADHD, such as being oppositional or having conduct disorder, as opposed to seeing that this could be ADHD or an undiagnosed learning disability.
Even getting assessed in testing. So if you don't go through your school system to get private assessment, it costs money. And it's often not covered by insurance. There could be long waiting lists in that. So, you have, from an institutional perspective, studies also show that healthcare providers carry a lot of implicit biases around how we diagnose. There was a study actually done where physicians were given the same scenario of symptoms. And in one scenario was Caucasian individual and another person who was an African-American individual, and the African-American individual was more likely to be given a diagnosis of schizophrenia versus the Caucasian individual of ADHD.
And so, we're talking about the same symptoms. And I'm not saying that physicians are all racist necessarily, but there is a lot of bias that we have to continue to unpack around how we look at behavior and really understanding the cultural context of this. Now, where it can get overdiagnosed, sometimes children of color get diagnosed with ADHD without really looking at other potential issues, such as trauma, such as the experience of racism and the distrust that a lot of people in the African-American community have toward medical professionals which is warranted and justified.
If we look at, historically, everything from the Tuskegee experiments of, you want to call it that, and just a lot of injustices that have happened in the African-American community. So, a lot of times even providers have to understand that when you're working with a person of color that, and this is regardless to a socioeconomic status, studies show that in African-American communities, that there's a real vulnerability that they feel, especially for a parent who's bringing their child to get diagnosed and what that means. So, there's a lot to unpack there.
Melvin Bogard: Let's discuss the challenges of African-American children if they are not properly diagnosed or treated for ADHD in the early childhood. What are some of the problems maybe you've seen in your practice?
Roberto Olivardia: With ADHD in general, when you don't have proper identification, proper diagnosis, then you don't get proper treatment and management. And ADHD is one of those diagnoses that unfortunately, a lot of people in popular culture, we see it as, “Oh, I'm so ADD,” in this kind of fad diagnosis. This is a diagnosis that can cause real ruin in somebody's life if it's not managed and not treated well. And particularly people with ADHD when it's unmanaged have higher risks of substance abuse, are going to face more problems in jobs and potential unemployment or relationship problems. Russell Barkley published a study recently looking at the health outcomes of people with ADHD, where they have a shorter life expectancy—I should say, unmanaged, untreated ADHD. I always want to clarify that.
And in terms of diet, in terms of paying attention to one's health. So now you imagine an individual, a child of color who is not being identified, and on top of that is being labeled as being oppositional, as being difficult, and then growing up in a culture in which there are institutions that make it very difficult for people of color to move forward. There are a lot of racist institutional policies and all of those implicit biases, that whether it's people in, professionals within the school system, and just the trauma of racism and the trauma that all of that entails really makes for a perfect storm in terms of all of these problems that can happen, and particularly in adolescence.
And if you have, purely for a lot of people of color who might grow up, let's say, in single-parent families, parents do the best that they can do and with the resources that they have. And it's very difficult if someone isn't being identified, and they might not have the monitoring or supervision because their parent might be working two or three jobs that it makes it really, really difficult. And then by the time that person is a teenager, and let's say they're using substances, and they're doing things that one should not be doing, it's very easy to say, "Oh, this is a bad kid," as opposed to looking down the line and understanding, well, if you felt like a failure every day when you went to work, and for kids school is their job, and you weren't being properly identified, diagnosed, and helped, then how are you going to think about yourself? And then on top of that, again, the experience of racism, of discrimination, of prejudice on top of that. So, there's this sort of double impact that that experience can have.
Melvin Bogard: What are some factors that can increase disparities in diagnosing and treating ADHD?
Roberto Olivardia: So, first, I think is really understanding the cultural context of where people of color could be coming from, again, in terms of the stigma that we know just in general, there's a lot of stigma of mental health diagnoses. The ADHD diagnosis, I would say that thankfully, the stigma of that overall is decreasing. However, I should say that in a lot of those studies they're showing it’s decreasing among Caucasian white individuals. So a lot of people who are white will often, particularly young people that I work with will say, "Oh yeah, I have lots of friends who have ADHD and are on medication. It's no big deal."
And that's not to say that there aren’t some impacts that can happen with Caucasian individuals, but overall you see that stigma decreasing. With communities of color it's very important for mental health professionals, for physicians to understand that it has a very different context. That the idea that in a lot of immigrant families or people of color, the idea that if there's a problem it's looked at as this is a problem of the family. And a lot of times parents feel like it's an indictment on their parenting in that way, that they're not whipping their kids into shape.
They're not keeping them in line in that sort of way, because discipline is really important. And so, part of our job as professionals is to understand where they're coming from. And it's not that they're being parents, let's say you're being defensive, or they're not being cooperative, or they're being distrustful as if it's unwarranted. We have to understand where they're coming from, and our education and outreach has to be on, "Look, this is not an indictment on your parenting at all and your kid is not a bad kid, is that this is something," and really explain the science behind it, that they can still be successful individuals. Because imagine, again, for every parent who has a child of color, they're always thinking and worried about the kind of world that they're going to grow up in.
And we know with just everything that's been happening lately, and has always been happening, but has really made it more in the news landscape around police brutality, that we know that parents who have children of color have that conversation. And that's something that a lot of white parents don't think, "Oh, I'm going to have a conversation with my white child about the cops." That's not something that we would necessarily think that most white families would experience. So, similarly, we have to have the conversation around diagnosis and especially with treatment.
Now, what studies also show is that with communities of color, that even when children of color are diagnosed, they're not getting the proper treatment. So now you have these barriers to even get diagnosed, to get identified, to get assessed, and then there are these barriers of treatment. And part of it is on one end, again, of insurance issues, of accessibility. There is a dearth of clinicians of color in communities. I mean, I think with physicians, I think it's 5% of physicians are African-American; it's a very, very low amount.
So we have work even on that end of trying to bring in people of color into the field. But, in addition, with something like medication, there's again this sort of resistance that you'll often see in communities of color, who are like, "Well, what is this medication going to do?" That there's this distrust, sort of this form of keeping somebody in line or of social control. And we need, again, not as a professional, we can look at that as like, "Oh, this is someone who's defensive and whatnot" without looking at the cultural context of historically what that means for somebody. When you're giving a medication, what are we trying to do? We're not trying to have your child necessarily be like everybody else, as much as be the best version of themselves.
So, I see a large factor is our ability, and this is why I'm glad we're doing this podcast, of just getting the messaging out, and the outreach out, of how we have to speak to these communities as opposed to the assumption being, "Oh, they need to understand, or they're being defensive, they're closed-minded," those kinds of things. And we need more representation, too. There are some celebrities out there like Simone Biles, the Olympic athlete. She talks about having ADHD. And will.i.am, I'm a big music fan. So will.i.am of Black Eyed Peas talked about having ADHD. And then there are people who I've not heard them themselves say but reportedly may have it. And we want to try to bring out famous people who have ADHD, who just provide some more visibility and let people know that it's okay. And that this is not something that's going to follow your child in a negative way.
Which, again, if you are a parent of a child of color, you worry about their future, you worry about them having as many options, because you know unfortunately today that there's going to be these forces that work against them. So you don't want a label that you think is going to limit them, that is going to brand them and have them stand out in a negative way. We need to let them know that's not the case. In fact, if it's not diagnosed, if it's not treated, then the problems that can come from that are the things that end up labeling them in negative ways and limit their opportunities. This is actually meant to increase their opportunities in that way.
Melvin Bogard: What do you suggest to African-American parents of children with ADHD when advocating for their child with a culturally unaware school system or medical clinician?
Roberto Olivardia: Yeah. So, I think, first and foremost, is to really empower parents to know it's okay for them—and more than okay—to ask for more if their child is not getting what they need. And I think a lot of times, particularly in communities of color, the messaging is to not ask for much and to be silent and be grateful for what you have and that sort of thing, as opposed to, well, wait a minute, my child is flailing here and they're not getting the services that they need. And it can be, again, to understand if you're a parent or parents of color and you're sitting across a room of people who are not of color in the school system, where there's an inherent power dynamic, that that's going to bring up a lot of different feelings and a lot of different emotions.
And so, to let parents know they're entitled, their child is entitled to an education. We all are entitled to that. To let them know too that sometimes, even with the assessments, studies show that there's often a disparity when children of color are assessed or any child is assessed. You have a parent fill out a survey, teachers fill out surveys, and you look for consistencies. Well, studies show that in communities of color you'll often see these inconsistencies, where teachers might rate one way, parents rate another way. And that doesn't mean that there isn't ADHD. It's understanding that if you are growing up in a single-parent family, the level of responsibilities you might have in that household are far greater. And so, in some ways I've heard from people who have said, "I didn't have room to procrastinate at home because I had to cook dinner. I needed to help my mom who was working two, three jobs. And then in school, it just was a totally different thing." It's understanding, not just looking at these surveys and these like, “Oh, you don't check all the boxes,” and really understanding and letting parents know to share their observations, share their story in terms of what their child is going through. Find people in the community. A lot of times word of mouth and working with other parents, hearing from other parents who have had children in that way in communities of color, whether it's through Facebook groups or things like that, but also through churches or through venues in which people feel a safety and a trust.
And it's okay for parents to know that they can bring an advocate, let's say to an IEP meeting, and support them. Because meetings can be very emotional, especially if somebody is saying, "Oh, no, we don't think your child needs that." Or, again, if a child is being diagnosed with ADHD and they may not have ADHD. It could be a child who is not eating because there's food insecurity in the household, that they're not sleeping well. And so, we always want to be looking at the big picture. And this is true for everybody. But what we know from the research is that children of color are—again, that overdiagnosis or underdiagnosis—is that we're missing the mark, that there isn't enough attention looking at the context of how all of these things play out. And so, for parents, is to educate themselves, listen to these kinds of podcasts, get information, talk to their child's pediatrician, talk to trusted people in the community, really look at resources that help them, just give themselves information, and come to those school meetings with that information.
Melvin Bogard: Those are some good suggestions. Any last words?
Roberto Olivardia: Anyone who hears this, if this motivates them to do a research study, to do a podcast about this, to interview clinicians of color, physicians of color, and talk to their communities, to religious leaders around how we can look at the conversation of mental health. That's what we just need to do: keep talking.
Melvin Bogard: Thank you.
Roberto Olivardia: My pleasure.
Melvin Bogard: Thank you for listening to another episode of All Things ADHD. To learn more about ADHD, visit CHADD at CHADD.org.
This podcast is supported by Cooperative Agreement Number NU38DD000002-01-00 from the Centers for Disease Control and Prevention (CDC). The contents are solely the responsibility of the authors and do not necessarily represent the official views of the CDC.