ACCTION Lab: Culturally Competent ADHD care

Friday Night Soundbites: Culturally Responsive Mental Health with Dr. Zoe Smith

In this episode of Friday Night Soundbites, hosted by Loucresie Rupert MD, the discussion centers around the importance of culturally responsive mental health services for Black and other POC communities. Dr. Zoe Smith, an Assistant Professor of Psychology at Loyola University, Chicago, shares insights about her work with Action Lab, focusing on providing and advocating for culturally sensitive mental health assessments, particularly for adolescents with ADHD in the Black and Latino/Latina communities. Dr. Smith discusses her Robert Wood Johnson funded project, CRAFT, which offers free psycho-diagnostic assessments in the Chicagoland area, and her approach to challenging and improving mental health diagnostics through community-centered research. The episode also explores the concept of Cognitive Disengagement Syndrome (CDS) as a distinct construct from ADHD and the importance of lived experiences in mental health advocacy.

00:00 Introduction to Friday Night Soundbites
00:17 Meet Dr. Zoe Smith
02:46 Action Lab Overview
09:25 Challenges in Culturally Responsive Assessments
16:11 The Problem with Standardized Testing
25:30 Community-Centered Interventions
27:08 Navigating School Accommodations
29:00 Building Trust in Clinical Interviews
30:43 Community Engagement and Feedback
32:35 Personal Experiences with Neurodiversity
33:58 The Importance of Earning Trust
35:19 Systemic Racism and Health Disparities
39:51 Challenges in Mental Health Diagnoses
46:46 Understanding Cognitive Disengagement Syndrome
55:41 Final Thoughts and Action Lab's Mission

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Transcript

Loucresie Rupert MD 0:00

Welcome to Friday Night Soundbites with me, Dr. Lacrece Rupert. Join me as we discuss topics that center Black and other POC. Neurodiversity, Disability, LGBTQ, Adoption, and Trauma. Today, we will be discussing Action Lab with Dr. Zoe Smith. Dr. Zoe Smith is an Assistant Professor of Psychology at Loyola University, Chicago. She earned her PhD at Virginia Commonwealth University in Clinical Psychology with a focus on Child and Adolescent Psychology. And her BA with highest honors at Kenyon College. She is a child and adolescent clinical psychologist by training, and it's part of the inaugural class of, of the health equity scholars for action. Her research is focused on creating and providing culturally responsive mental health services for black and or Latino. Latina, Latine, Latino adolescents, particularly adolescents with ADHD. Her current Robert Wood Johnson funded project, Culturally Responsive Assessments for Teens, CRAFT, provides free psycho diagnostic assessments for Black and or Latine adolescents with suspected ADHD in the Chicagoland area. This project is still recruiting, so if you know anyone, please get in contact with Dr. Smith. She has authored 37 peer reviewed manuscripts, which sits under review, over 80 invited in conference presentations, has a strong background in advocacy for trainees in psychology and related to liberation efforts. Dr. Smith is also a statistical And liberation consultant, if you are interested in the work she and her team does, please reach out via email or on one of our many social media handles. And we will have all of that information in our show notes. Welcome Dr. Smith.

Dr. Zoe Smith 1:49

Thank you. Thank you so much. It's funny. Um, so my name is Zoe and not so, and I was like, I immediately was like, Oh, do I say some things? Uh, do I like share that? Oh no. Now she's going through the intro. So that, uh, now I don't want to stop her. I don't want her to have to rerecord.

Loucresie Rupert MD 2:08

Oh, I didn't realize that we don't have to rerecord. That's a good, good example of correcting people. Yeah,

Dr. Zoe Smith 2:14

no, exactly. And then I was like, you know what, I'm just going to say it because this also is an example of like my rumination that happens with. You know, all of the things going on in my head and in the world. So, um, anyway, I just, yeah, I wanted to say that, which

Loucresie Rupert MD 2:29

is really weird because I know, I know Zoe is Zoe. So I'm really surprised that I said, so that was probably my anxiety.

Dr. Zoe Smith 2:38

Yeah. Right. Exactly. It was, it was my anxiety not to immediately correct you.

Loucresie Rupert MD 2:46

So tell us about Action Lab.

Dr. Zoe Smith 2:49

Okay. Uh, yes. So Action Lab, oh gosh. Okay. It stands for, I always forget, Advancing Community Centered Interventions. And so the purpose of Action Lab, uh, is really to provide services, advocacy, and complete research to increase culturally responsive mental health services. Pretty broadly. And so right now, um, we're focused on assessments, which kind of, you learn how to, you know, you learn about people's diagnoses, identities, um, things that are important to them, strengths, but creating that in a culturally responsive way. Because right now, basically all mental health. Treatment assessments, consultation, everything, you know, well, actually everything in the world, but everything is built in white supremacy. And everything is, you know, racist, problematic, not done in the right way. And, you know, we all have our biases, but the real important part of our project, or I'm sorry, of action lab in general is to really support. But also center community. And so our community and most of us on the team identify as some part of the action of the communities we serve, whether that's racial, ethnic identities, whether that's identifying as LGBTQ whether that's identifying as. Um, having a disability as disabled, um, you know, under that neuro diverse, uh, mental health issues, you know, all of us, every single person on our team has some kind of identity. That's really important to center. And it's because we value lived experiences. And so. When I say center community, those are kind of, our community includes, uh, neuro, neurodiverse individuals, individuals who have mental health difficulties, uh, people who are Black, multicultural, um, or, and, or Latina, Latina, and Latino. It's not that we're excluding. Other identities. And there are people that don't hold all of, you know, all the identities, but it's really important for us to center on these identities and individuals that we are literally focusing on to serve because our projects are specifically created for black and or Latina, Latina, Latino teens and families. And the reason I do the, and, or in that sentence is often the black experience it. Experience of Latina dad is not, uh, what's the word valued isn't the right word, but it also is that, but is often not included in this type of work. And so it's really important. I also hold those identities. And so that is coming from a place of who I am and what I think that my lived experiences and my perspectives can help. improve research, not be a limitation of research, which has often been undervalued or said that. So it was a lot. Um, but those are general frameworks of action lab and ideas and it's new. We, you know, I am an assistant professor. I'm a clinical psychologist. Um, and what an assistant professor means for those who may not be as familiar, it means that I am on the tenure track at an academic institution. That's not what all assistant professors are, but that's what my role means. And that means that in, I'm in my second, I'm just finishing my second year. It's currently finals week. So the reason for me continuously talking so much is because my brain is. For I, my executive functions are like, who are you? Where am I? What, what is happening? Um, but to, um, to, you know, the job and the position is I'm not tenured. And so that means that, um, my colleagues in the psychology department and then institutional administrators will vote on whether I get to keep my job in like four years. And I provide this context because my goal and the goal of Action Lab, like I and Action Lab want to be one, is that no matter what we do, whether it's grant, like grant funded research or not, or who our team is, that it is always serving community and it never gets taken away. Because most grant funded projects are You know, it's great. The service is provided. It's free. People get paid potentially or have other compensation research. And so part of action labs mission is that we never do that. Like even when my grant funding is up. I apply for more, but if we don't have it, the project craft, which you mentioned in the intro, is never being removed. I literally, it's a health equity grant talking about, you know, these individuals in the Chicagoland area, Black and or Latina, Latina, Latino teens with ADHD are really underserviced and systemically excluded from our care and these assessments. So how the, can you swear on this podcast? Sure, go ahead. How, I'll just say heck, because you had a hesitation. So I'll just say, I was just

Loucresie Rupert MD 8:45

laughing, but you're, you'd be comfortable. Do you? I'm better.

Dr. Zoe Smith 8:49

Then how the fuck can we, um, say, okay, well, we did this health equity grant and now I don't have any money, so I'm gonna take it away.

Loucresie Rupert MD 8:59

Yeah.

Dr. Zoe Smith 9:00

That just doesn't make any sense to me and is, goes to the, I mean, systemic problems of the position I hold as an assistant professor, because I'm not incentivized to do that. That is because it is centered in who I am. What our lab stands for.

Loucresie Rupert MD 9:22

So tell me a little bit. So, um. How do you change your assessment? So I'm a child and adolescent psychiatrist, um, and I guess I haven't formally written a culturally sensitive assessment, but obviously, as somebody who is, um, who works, um, in DEI and is Black and disabled and neurodiverse myself and all of those things. I know how to switch it up. You know, I just know, uh, how to be culturally sensitive for my assessments. But that said, I know how to do that. Everyone doesn't know how to do that. Like you know how to do that. Everyone doesn't know how to do that. So it sounds like you're kind of more formalizing how to make a more culturally sensitive assessment. Um, so tell me a little bit more about that. Like, how is this formalized? Like, do you, uh, have a set of questions you give your clinicians? Um, how are you teaching people how to do an assessment? Cause you know, like I said, I just, I just do it cause I know how, but I don't have anything written up to then teach. Uh, a white psychiatrist how to do that,

Dr. Zoe Smith 10:25

right? Exactly. And that's all to make goal is to have guidelines for everyone who does any kind of diagnostic interviewing or anything. That's the ultimate goal and to change how everybody. Does it cause right? Like we do it. I did it even without, you know, like, you know, you just do it because you understand and you want to grow and you have that lived experience, but many people don't or haven't had the training or understanding of how to do a culturally responsive assessment. And so for me, it comes from the action team. And so the link clinicians right now that are doing the interviews, Are people that are part of our team and doing the assessment. So we do do academic achievement and a brief IQ through the WASI, which I do not agree with and I'm not okay with using that. But schools and systems do want that, um, information into reports for like accommodations or other things. Um, that are really important. And so I include it because we're still part of a system. I'm trying to change and break and reman reconstruct that system. But if we don't have it, then it's going to be important to, um, do this in a culturally responsive way. So I talked to my team like this. So the way we do like the WASI and the which are technically intelligent assessments and tests, I talk about the racism, I talk about the sexism, I talk about the cultural bias, and then I talk to people about how do we, what's the word? How do we, Use that information when our, um, teens, um, are completing these assessments. And so that includes, like, for one example I give my team is that a lot of Black youth use, like, depictors or, um, you know, describe or do storytelling. And that's also the case with people with ADHD. And so to be. You know less ableist and less racist when we're doing vocabulary which often has like very strict rules on How a word can be defined We are much more flexible in our queries in what's a two versus one versus zero score For that to inform that practice. So that kind of goes to like the same with like the academic achievement ones, like just understanding, um, still keeping to the standardization of the test, but being more open to that interpretation of what standardization is, because basically it's like standardized on who, and it's not my.

Loucresie Rupert MD 13:16

So, And you know, so, okay, you said, uh, WISC. Could you explain what that is for people who don't know?

Dr. Zoe Smith 13:23

So, what, um, the WISC, the reason we include Okay, actually, I'm gonna, I'm gonna answer your question, but I'm gonna back up and explain Project CRAFT a little better. And then it'll answer you. Well, this question will be answered very simply. It's because of accommodations and IEPs and five or four.

Loucresie Rupert MD 13:43

No, I know. No. What is, what is with, Oh, I'm going to, I'm going to get

Dr. Zoe Smith 13:46

there. I'm going to get there. I swear, but project craft in general is including clinical interviewing. So we're looking for all. Diagnose diagnoses that are kind of child and adolescent, um, uh, you know, informed all like depression, anxiety, ADHD, autism, uh, learning disorders. Eating disorders, OCD, uh, and bipolar disorder. There's a lot of different things we do in the clinical interview. Um, and then it also includes more qualitative interviews, talking about identity, um, talking about strengths, talking about a lot of different things. And so the teams go through the clinical interview, um, with the interviewer, And then they are taken to another room to complete the assessments. And so the assessments are what we call, are, are included are the WISC, which I don't know how to say Weschler, but it's a Wenschler intelligence something scale for children or something. I don't know. I don't know what the abbreviation stands for, but basically what the WISC is, is used for, is used for intelligence testing. And so. What that is simply, um, is, um, an estimation of someone's intellectual capabilities and abilities. I, it is not, uh, uh, culturally, uh, responsive, so I don't like using it, but it is important, um, to include for schools. Because they, when giving a diagnosis of something like a learning disability or needing accommodations for a specific subject like math and having a learning disability in math, most schools expect that you've completed this assessment of capability, which I don't think it is an accurate assessment of capability, but this problematic assessment of capability yet. To then be able to provide these accommodations to students to help them be successful and really meet their full potential.

Loucresie Rupert MD 16:11

Let's talk about WISC a little bit. So, you know, I always, and I try to impart to psychologists, the psychologists that I work with, although honestly, I don't think they necessarily listen to me, that for, for people of color, black people, um, Latino, Latina, Latine people, Asian people, um, but also newer diverse people. And also, uh, people like depressed people. Um, you know, IQ tests, well, IQ tests are racist. So, but they're also just not valid. And one example that I give is that I work in my fellowship. Program with me was a person who, so they're in fellowship. So that means they made it through college. They made it through medical school. They made it through residency for, so for child psychiatry, you have to do an adult residency first, and then you do a child fellowship. So they made it through all of that and they were struggling because they had ADHD, but it was undiagnosed. And so they were going through testing and they did an IQ test and their IQ test came back as like, I don't know. I think it was like 70 or something. Um, and you know, you can't really make it through medical school and residency and fellowship with an IQ of 70. I guess maybe you could, but I don't think so. So, but it just goes to show that untreated ADHD, um, neurodiversity, like IQ tests are just, they're not valid. So one thing I try to impart on my patients and my families and also the psychologists, even my own kids, my kids are neurodiverse, I'm neurodiverse. Is that when we do an IQ test, because like you said, we have to do them so many times for so many reasons, but this is a snapshot of how your kid did that day of that test. And they're likely not going to do, uh, they're not, they're likely don't have lower capabilities, but that doesn't mean they don't have higher capabilities. So I try to just, you know, make sure people love that.

Dr. Zoe Smith 17:59

Yes. I love that. And honestly, like, I often with families, we have a similar conversation. Like I don't ask for, um, well, I, I guess in my training as a clinical psychologist, you get a lot of training and assessment, and I got a lot of hours of training, but honestly, um, some of it was really great and some of it, not as much. And so, uh, One thing that I always talk about with families is I'm kind of like, honestly, I mean, I just name it. I'm like, this is racist. This is invalid. Like you said, like, it's really important to understand that, like, exactly, like this isn't showing the full capabilities. Like if anything, it's showing a much lower capability than, um,

Loucresie Rupert MD 18:52

you

Dr. Zoe Smith 18:52

know, your child has. Or if I'm talking to the teen that you have, um, and so here's my point. I don't center the, um, feedback session with families on that either. Like we talk about it, we talk about the problems with it. We include that in the report that these are biased, um, you know, these are biased. Because of X, Y, and Z. And so it should be taken, I don't know what the professional term is, but basically a grain of salt, um, and then think about, think through how, um, instead focus on strengths as well as. Support and what I mean by that is like the whole theme is this is who you are and often I wish I had the numbers in front of me, but we have completed about between 15 and 20 assessments as of right now for project craft. And about at least 80, if not closer to 90 percent of our teens, who all either identify as Black, uh, Latina, Latina, Latino, um, Indigenous, uh, and a combination of any of those, uh, they all have a A first time diagnosis at ADHD, 80 to 90 percent these are, and their average age is 15 and we include 12 to 18, uh, 11 to 18, actually I've changed that, uh, and it just shows you that the, how much inequity and how much racial bias. There is in receiving this diagnosis that, and these are, these are kids, these are teens and families that have shown such clear indications of ADHD, like almost every single one of them. I'm like, yeah, no shit. You have ADHD on the phone talking to them for five minutes. Like, I mean, don't diagnose that way, obviously, but you know, when you, when we're on the phone, I'm asking questions. Asking questions about symptoms and just in general our interactions, like, like how you and I have gotten distracted. Well actually I've gotten distracted. And you've gotten interrupted by NeuroDiverse Children. Like, you know, like these things happen on conversations in like a five to twenty minute phone call. And you can just kind of like, anyway, it's just like so clear and obvious. but because of racism, because of bias in the people that refer, like teachers. pediatricians, psychologists, psychiatrists, um, who are not trained in a culturally responsive way, um, completely miss it. And a big one is also teachers. I don't know if I said that, but there's also a lot of bias in our school systems and there's a lot of, um, Kids with ADHD, um, who get diagnoses, like, instead of ADHD, if they do get a diagnosis, it's more likely to be oppositional defiance. Which I don't diagnose at all. I refuse

Loucresie Rupert MD 22:11

to

Dr. Zoe Smith 22:11

diagnose. I don't either. I refuse to too. Because it's always something else. And I also talk about it because it's, it's literally a normative reaction to an oppressive system. Like, we are just completely pathologizing it.

Loucresie Rupert MD 22:27

And it's the one diagnosis in the DSM 5, which I, It's the, so obviously all diagnosis are kind of quote unquote, a list of symptoms, but there's normally the science of why behind it with, with all other DSM diagnosis, ODD is literally just a list of symptoms and there's always a reason for the symptoms. So why do I need to diagnose ODD? It

Dr. Zoe Smith 22:47

doesn't make any sense. It is. I mean, I actually, I mean, it doesn't make sense because it's comparatively problematic and racist. That's sad. All of the words I can think of that are just bad. Um, but I mean, it, it reflects how people pathologize kids. Mm-Hmm. all kids, because it's not just black kids, not just Latino, Latina and Latino kids getting these diagnosis, but all kids and how kids are often policed more than adults are in their behaviors. And it's so developmentally inappropriate to do that. So it's like, if we have not taught and modeled these, like, appropriate or good or helpful behaviors, like, how the hell are kids supposed to do that on their own? And we expect way too much of them. And then this particularly happens with the intersectionality of, you know, Blackness, colorism, et cetera. Yeah, I had a,

Loucresie Rupert MD 23:48

uh, a five year old white kid one time that I, that came to me that had been diagnosed. With conduct disorder by a neurologist. I'm not really sure. I five year old, um, and for those who don't know, yeah, for those who don't know, conduct disorder is kind of like the quote unquote baby antisocial personality disorder, which you actually don't diagnose until late adolescence. Anyway. Although I think I've maybe diagnosed conduct disorder at one time in my whole career. Um, but, um, but it's definitely not something you give, you know, It's just not something you give a five year old, like.

Dr. Zoe Smith 24:23

It's just like the most, that is like, I can't think of a good example, but that is the most absurd. It's like giving, I don't know, a diagnosis of cancer to someone who doesn't have cancer. Like, I mean, it's just like, absurd. I mean,

Loucresie Rupert MD 24:37

they were basically calling this five year old a sociopath, is basically what was happening. Uh, because he didn't seem to have empathy. And this kid was very neurodiverse. Like super obviously neurodiverse. So, so there was that intersectionality of neurodiversity, but, you know, and, and the, and they were not high socioeconomic, socioeconomic status. So there was that, you know, that issue too. Um, but it was a five year old white boy, which, you know, kind of. Theoretically or stereotypically, people tend to look for more answers. Think you're a sociopath at five. Um, and so of course mom was distressed and I'm like, Oh, child, don't even worry about that. That is not, that is not what's happening here. That

Dr. Zoe Smith 25:14

is not true at all.

Loucresie Rupert MD 25:18

Um, but yeah, so it's, it's so back to, you know, but to the topic, um, tell me, so action labs are doing these, uh, these. Assessments and then providing, you know, I see a lot about community based, um, or not community based, I'm sorry, community led, uh, interactions or interventions. And can you give me some examples of, like, how you listen to the community and it's like, oh, this is the intervention that we would do for this family that we maybe wouldn't do for another family because this is, we're listening to that family or that community for these interventions.

Dr. Zoe Smith 25:56

Yeah, no, that's yeah, exactly. So we like to center, um, the voices of people that we serve. And so right now, actually, the email is supposed to go out sometime today. We're inviting families who have so far participated. So the 15 to 20 families that have participated to be a part of our action lab. Um, youth. And parent advisory boards. And so these are all families who have gone through the assessment, gotten the feedback and received an integrated report from us. And then we will be asking them questions about the process about, you know, services. So the services we, uh, referred them to or accommodations that they may have started, um, and then we'll hear them and change anything that makes sense to do so. So we can center their experience and make it, I'm going to say, I don't think it's completely neurodiverse friendly right now. And that makes me really sad. And it's hard because it's, The things that I need to include, like the, uh, IQ test is too long. It's too long and not neurodiverse friendly, but it's necessary to be a part of the school system and receive these accommodations. So, I then need to cut from the things that I do value and think are important, like qualitative interviewing, Doing a mini intervention during the clinical interview, um, like motivational interviewing, safety planning, uh, some CBT or reframing or whatever is needed, um, or feels needed in the moment, um, but the other thing is, like, throughout the interviews, You honestly, it's been really amazing because the teams become really open and have shared that doing these clinical interviews with all the interviewers. Um, okay, there's two of us. So it's me. And then our PhD student, uh, um, Marcus Fox, who's amazing. And we both have identities that are, you know, racially and ethnically the same as everyone we're serving. And so, uh, that makes a big difference. And I'm not saying that other people who don't hold those identities can't do this, but this is often a really important indicator of, okay, let's see what's up. I'm like helping to build a relationship, even though with assessments, it's not like therapy where I can create this and build a relationship over time during an assessment. I see them twice, um, and we follow up over the phone and text and email, you know, to help support and do case management, but like some families, it's just once in person. And then the feedback session is done over zoom or telehealth. Platform. Um, and Uh, we, you know, have to, like, earn this trust to ask these really sensitive and difficult questions about mental health, about life, um, about racism, about discrimination, about identity. And these teams have really been amazing in their ability to To be really authentic and open and brave in these conversations with us. And so often we, uh, well, always actually not often, always we will ask them what they're potentially interested in or what kind of thing has worked in the past. What has it before the interview is over. And then we incorporate that into the integrated report with our recommendations. And then we seek feedback on that and that has been something the referrals and recommendations, which actually I think was your question that we do have all come from Action Lab has created a, uh, we have a mental health directory team that is, you know, combing community organization websites. reaching out to leaders in community in the Chicagoland community who hold similar identities to our teens and families and only we only recommend providers that at least based on word of mouth or some kind of communication somewhere else like You know, like there's someone I trust and they're like, no, not they're good. I'm like, sweet. Okay, let's do it. Um, we That's how we are providing referrals but also You know now that we've had you know our first family. Um, it's We started and it was either end of September or October of 2022. So very pretty fairly recently. Um, so they've been with our group for about six months and, you know, we asked like, so how's this going? Like, anything working, anything not working. And actually this team was like super responsive and said, actually these accommodations are, these are the accommodations that are working in school and these are not. Um, and then, um, also about the therapist that they were working with. And we take, we just, We use all of this information and use it to inform. And I think that there are, we strive to be better. So that's why we're doing advisory boards. We just needed enough participants before we could ask people to do that. Um, but we're going to continue, like we have community partners that we talk with and, um, you know, sometimes we set up a table. And just like hang out at like a, you know, like a community event and a lot of us live in these communities that we're serving. And so just by being around and showing that you're down and you're part of this and you're interested and care. Goes a long way to earning trust and then learning about what is actually going to be helpful to the people that we're serving. I don't know if that fully answered your question, but it did answer some of the questions.

Loucresie Rupert MD 32:35

Yeah, no, just, um, I'm very open about being neurodiverse and I'm very open about having neurodiverse kids, though I don't. You know, tell all their, their story cause that's theirs to tell. But, and, um, obviously black when the patients see me. Um, but yeah, that was this, you know, it just goes a long way with like with parents, I, you know, kind of, not kind of understand it from the parent side as, as a parent of neurodiverse children. Um, and then with the kids and even, and especially, so I work in a small town or actually I'm not working right now. I'm actually on disability, but when I was working, I initially worked in a small town and then I moved to another company that was. Like a couple of towns over, um, but still smallish, but especially the first job I had out of training. A lot of my patients were getting the same services as my kids. And so, um, for a psychiatrist, no one was ever inappropriate or anything like that. But it was also really helpful because the patients were just like, parents and kids were just like, she's literally, their family is literally going through what we are going through. So, um, You know, we could, uh, we all are trying to do our best here and I'm trying to help them and they, and they knew I understood. So that would alone way with just automatically having trust that I, that I didn't have to build. Um, but to the point for those who don't have that experience, who don't have that lived experience, or don't have those intersectionalities, uh, there are ways to build trust. Um, and it sounds like your team is doing a lot of research. Well, not necessarily on building trust per se, but doing a lot of research on, um, finding out what, what our underserved and unheard and, and not listen to communities need so that we can let people know how to, to interact with our communities to help build that trust. One thing I want, so I want you to comment on that, but before I forget, one thing I do always like to impart to clinicians. Um, is that it's our job to earn trust, like a lot of physicians, uh, psychologists, nurses, just people in the medical community in general and people in the mental health community in general, kind of expect patients to come in and trust you and follow your recommendations. And I'm like, why? Why? I mean, why would you feel that it's automatic? Based on the history of America. And what world would you think that should be automatic? So I always like to impart on clinicians, based on history. So it's always our job to, to earn that trust and not wonder, you know, the patient's not listening to me. Well, did you give them a reason? It's my question.

Dr. Zoe Smith 35:06

Exactly. And that's why, like in notes, I like tell people that I supervise, like, We never use the word like mistrust of me or something like that. Cause it's like, no, I haven't earned that trust. Like I always use that term, like earned trust and you know, you can work on earning it and do a lot of work and still like the systemic racism and oppression that exists in each of these systems that we're a part of, like, I'm a part of a really problematic system. And I. I'm working to change that system, but it doesn't mean that I'm not upholding it right now because of where I am and where we live and how we exist and interact with the world. But I do my damn best to make sure to check that constantly. Think in a system centered way. So instead of, so for example, The thing that I always, always, always try to impart on any trainee or student or colleague or supervisor or anything. Uh, well, actually there's so many things, but one example of this is that in the research world, a lot of people use, like, identity as a proxy for the system instead of using, uh, You know, the system as the reason for things. So my example with this that's often used in papers is that people ask people's racial and ethnic identity and then they use race, not racism, as like a predictor or a moderator or something. And I'm like, but this isn't actually capturing what you. You're saying it's capturing, it's capturing an identity piece that was usually forced choice. And then, um, and maybe not fully accurate to how that person identifies. And then it's just, it's not, it's not true. Like you need to talk about it in the system. It's not, um, race that is associated with, um, I don't know, higher levels of trauma. Like, for example, with Black youth, um, Black and, and, or Latino, Latina and Latino youth do, like, research says that, but it's racism, it's oppression, it's redlining, it's gentrification, it's segregation, it's, um, Generational wealth and an ability to get a mortgage in areas and and a job and have that generational wealth. It's all of these systems and legislation and policy that has impacted Our lives, and that is not race. It's the system. And so

Loucresie Rupert MD 38:00

one example that everybody knows is that they say black people, Latino people and indigenous people have higher blood pressure than other people.

Dr. Zoe Smith 38:08

Exactly. Yep.

Loucresie Rupert MD 38:09

When it's not that there's something about our black and brown skin that causes high blood pressure. It's racism. Um, and in racism in many forms. Food insecurities, food deserts, like all, you know, in all of the forms is what's causing the high blood pressure. There's nothing inherent in our genes that's like, you're black or brown, so you have high blood pressure. Exactly. Um, which, I just read something. So I have a group for physicians that, you know, works on trying to be intersectional, um, so, and this has nothing to do with being neurodiverse, but, but medicine is slowly, very slowly, very slowly and very behind trying to change that. But I just read where somebody had posted an article in the group before this, before we started this with asthma. So like, you know, pulmonary function tests, like you have to take the breathing test for asthma, you know, instead of saying that, Black people have more asthma, whatever they're making it. That is not a race determined thing, but, uh, it doesn't say racism specifically, but more of a trauma slash, you know, they're, they're trying to change that language to take it away from black people have more instances of asthma, which is, which, as we know, it's not the case it's where you're growing up, but you're breathing the air quality. I mean, which is the case, but it's not because we're black. Environmental

Dr. Zoe Smith 39:29

racism. It's.

Loucresie Rupert MD 39:32

So that, so that, you know, as medicine is, is, is very behind, but, but it's still good to see those changes where people are not blaming the victim. Cause that's what we do. That's what we do in medicine is we blame the victim very often, most of the time. Right.

Dr. Zoe Smith 39:47

And we pathologize a normative reaction to oppression. And that's a lot of, I teach. Undergrad and PhD graduate student level class on psychopathology. And what that is is basically just mental health diagnoses and the DSM 5, which is our diagnostic and statistical manual that we use to. To determine if someone meets criteria for a diagnosis. And there are so many problems with this. There's a problem with the categorization of diagnoses. There's a problem with the symptoms, the impairment, the, like the whole DSM has a ton of problems. And I talk about that with my students and I talk about, well, right now we have this as a starting point. Um, so yes, um, you know, technically they're going to receive a PTSD diagnosis, which for those of you don't know is, um, post traumatic stress disorder related to trauma, um, a traumatic event. Um, which don't get me started on that actually, cause it's like, ah, what about complex traumas? What about like chronic stressors? Nope, nope, it's not. Um, but like, but it's really like these. Um, symptoms like of hypervigilance, of, um, heightened stress, and then, right, related to blood pressure is actually a normative reaction to the oppression that that person is experiencing.

Loucresie Rupert MD 41:22

Right. Is it really hypervigilance to be scared around cops? Or if cops are, are you're, if you're constantly seeing cops kill your friends and family, is that hypervigilance or is that appropriate fear? Ah,

Dr. Zoe Smith 41:34

no, and I wouldn't say that's hypervigilance like even like within this, but it's also Like in our system, we have to say that because you're having that biological and mental interaction of that effect And so, and that's what I talk about with families. I'm like, listen, who, like, it's amazing, like, you're amazing. Like all, all of our families are amazing. No matter what stage or where they're at or what diagnoses they have, because just to exist and live as a Black and or Latino, Latino, Latino, Individual in the United States in the Chicagoland area, as we always talk about specific contacts is just amazing. And we shouldn't pathologize that because it's fucking hard. It's so hard. And yet there is, I also don't want to sound so negative because there's also so much joy and so much community. And we share that too, but because we use the medical model of diagnosis right now, which like focuses on illness and. pathology, um, instead of, you know, more systems like policy focused kind of diagnoses. Uh, we, I have to talk about that with clients and be able to say, like, listen, having a diagnosis of ADHD, Do not let yourself say, I get it, because many people do, but don't, don't, I don't want to hear you say you're lazy, I don't want to hear you say you're dumb, I don't want to hear you say X, Y, Z about yourself related to this diagnosis. These are, you are having, this is a neurodevelopmental diagnosis, you, you're, Like, literally, your reactions to, again, an ableist world, a lack of neurodiverse friendly school, um, home environment, whatever, um, is the reason that there is this impairment. If we actually lived in a world where school, where people were taught to value neurodiversity and the ways in which there are so many strengths to that, then we would be going to. be in a really different place. Like, yeah, you could say like, oh, this is why I have ADHD. This is why my brain functions like this. So this is why I act like that. But in our current world, we're like, often treatment is forcing neurodiverse individuals or individuals with mental health conditions to interact in the way we as a society have decided people should act. And all of those things that go into what people should act are all forms of white supremacy. And if we don't follow that, then we are told we're disordered, which is why I don't use the word disordered. I use diagnosis. Because it's just, it's not, it's not, it's not abnormal. It's not, it's not negative. It makes sense.

Loucresie Rupert MD 44:43

And not only that, from a historical perspective, and historical I mean in like, uh, in, in human history, um, ADHD is, I can't think of words right now. I'm having a no word day.

Dr. Zoe Smith 44:57

Oh, I know exactly. Environmentally, I literally have it on the fly.

Loucresie Rupert MD 45:04

Like it, like it was positive to be able. So, you know, even though we know we use ADHD stands for attention deficit, that's it. It's evolutionary protective. That's what I was trying to say. So if you If you were around during, you know, I always use prehistoric time with my kids because they know what that is. Right. And you were able, so we say that ADHD is attention deficit, but we know it's more of an inability to filter attention. So you're able to pay attention to multiple things. Well, that was very, that's a, that's an advantage when you're, you know, a hunter gatherer, when you're able to listen out for danger and watch the kids and, and gather, you Uh, food, that's an advantage. That only became a disadvantage in very, very recent hu human history. That's even an advantage on the farm. So it's only a disadvantage in very recent human history with the with the invention of 8 hour school days and 8 hour work days, if we're being honest. Uh, so

Dr. Zoe Smith 45:58

Right, which is capitalistic and does not. Okay. So, you know,

Loucresie Rupert MD 46:03

I tell my kids, I'm like, you're still here because, because we are the reason that the species survived to begin with. So,

Dr. Zoe Smith 46:12

yes, I love that.

Loucresie Rupert MD 46:14

So, yeah, so beautiful. And I think, and you know, again, I'm, I'm in the same place as you, I use the diagnosis I have to use. I, I, You know, I, I, that's the diagnosis we have, but I do try to have that conversation from a neuro diverse, positive place. So even though I'm saying that you have a disorder, because that's what I have to call it, because that's what it's called right now, know that these are the positive things about what we have and that we are the reason that the human species as a whole is still strong and still here. I mean, yeah, perfectly sad. Like, exactly. I did want to ask you, so I actually never heard of this before. So I was looking at your website. And you were talking about, you know, I got to pull it up because of course I don't remember the word. Um. Are you talking about Cognitive

Dr. Zoe Smith 46:57

Disengagement

Loucresie Rupert MD 46:58

Syndrome? Yes, that is it. So I've never heard of that. So what is, well I read what it is, but could you tell us what it is and how you differentiate that from Cognitive Disengagement Syndrome? Like ADHD?

Dr. Zoe Smith 47:08

Yeah, such a great question. So, it was, um, it's a construct. So, it's not a diagnosis in the DSM. So, a lot of people have not heard about it. So, it's mostly been in the research world. It was, um, it was originally, I don't want to say noticed, but originally written about, I guess. Um, in the 80s by, um, Dr. Ben Leahy and a graduate student. I want to say Carlson, but I could be wrong. Um, who noticed and some people with ADHD, there was this disengagement of from the environment. And so what that means is, um, kind of there's. Three main aspects that we've noticed with cognitive disengagement syndrome. Um, that includes like excessive daydreaming, like people that are really spacey, uh, let's see, hypoactivity, um, in talking and, uh, processing things and hypoactivity is like slow. So if we think of ADHD, hyperactivity. Um, CDS is like the opposite, like slower movements, taking longer time to process things, um, and then mental confusion. So the example I always give, so basically the short version of the story is, um, is that ADHD and CDS are not the same and is not originally was thought of as maybe a potential fourth presentation of ADHD. But what we found from research is that that's not the case of people without ADHD show symptoms of CDS. Um, but it's complicated because It is really tied to EDHD, and so the people, the experts in the field don't really want to put it in the DSM right now, like it's not necessarily conceptualized as a disorder. Um, it's, we just, so we call it a construct, we call it a syndrome, and are not really trying to move towards diagnosis right now, but one thing that we have done in the past few decades is done a lot more research. in and outside of people with ADHD and learned a lot more about cognitive disengagement syndrome. So there is a fair amount of association with social withdrawal, social difficulties, high levels of things like anxiety and depression. Um, Of course, I'm like blanking, um, on all the other things. There's a paper we wrote called the report, um, it's like the working group paper. Um, I'm an author on it. And so it explains a lot of this history and understanding and future directions of CDS. But let me get to my example. So the difference I always talk about with a kid with ADHD versus a kid with CDS. is let's picture, um, a kid with ADHD in the classroom being told to complete a worksheet and so on their own, individually, which is really hard to ask a kid, an adult sometimes, you know, but particularly a kid with ADHD. To kind of complete on their own without some like specific instructions. It depends like not everyone, but let's just say it's been hard for this. This kid, let's say they start working on it. They skip a few directions and then they hear. You know, one of their classmates coughing and that distracts them. So then they're off, they look up and now they look out into outside and they're looking at the window and now they're thinking about something else or kind of paying attention and focusing their attention on something else or having trouble focusing their attention back to the task at hand. And often this is seen more observably, um, and can lead to like restless Like, fidgeting, wanting to get up and maybe impulsively get up out of their chair and look out the window. So that's more like an ADHD picture, like very, like, there's so many problems in this example, but it's just to share. And then with CDS, just to show a comparison, with CDS, an example, let's say the same student, but now they have CDS. And this student is asked to complete a worksheet independently. So they start in the directions, They're not skipping the directions, but they might not be engaged with the directions. They might be reading it, but not really fully, um, getting that understanding of what's being asked of them. Or if they are, um, if they are in like a focus moment, then, um, it's taking a little bit more time. So it kind of, to a teacher, it could look like, They're working on it, you know, um, just maybe more slowly, but what's actually going on potentially and someone's, um, with CBS's head is that they're not reading the instructions at all. They are daydreaming about something beautiful and more exciting and awesome and are distracted by this disengagement from the work they're doing. So they got distracted by something more internal. Not external, like the example with someone with ADHD, there was a sound that distracted them from working and then they looked up and then got distracted by more external, um, you know, uh, external things. Um, where if someone with CDS, it's more internal distraction. It's being distracted and moving towards daydreaming. And. Um, I can't think of all the other words right now, but thinking, um, kind of like a movement of thinking that is not, um, focused on the task or their environment, the current environment that they're in. Um, and then this can lead to like, this can have symptoms of like confusion, but. It's hypoactivity, so there's not like that restlessness, there's not that impulsivity. This kid might be just staring at the worksheet, and the teacher's thinking that they're working on it, when really, in reality, they're not, they're completely disengaged with, with it. And for both of these examples, All of us experience this at times, but what I say with people with high levels of CDS or have a diagnosis of ADHD, again, like you said earlier about ADHD, it's this difficulty to, you know, focus that attention to, um, because there's so much going on in the world where with CDS. It's more so that that attention has gone internal and is much less so And that is distracting in that way um, and the term Um just changed so we used to call it sluggish cognitive tempo, which we felt like was really derogatory Um, didn't really accurately depict the construct. And so a group of, I think it's 13 of us who are all the coauthors on the paper I mentioned earlier met for a very long time, for at least a year. Um, talked and discussed how to make this change to have a term that is more, um, uh, I guess more accurate, um, to, um, the experience of people with high levels of CVS. And, you know, we asked people who have higher levels of CDS, we, as experts, like looked through it. We talked about how we can socialize it. So anyway, I'm going to stop there because that was a lot.

Loucresie Rupert MD 55:11

Well, yeah, well, I'm very interested in it because I definitely, I mean, like, I definitely have this. And so I always just considered it a part of ADHD, but it is different from, I mean, it's definitely different from external distractions, which I also have. Yes. So fun. Yay. Yay. Yay. But, um, so I get, I get, I get distracted by myself, by nothing, by everything. Like it's just. We only have a few more minutes, but is there anything you want the audience to know about Action Lab? Um, like I said, I will get you to send me all of the information on how to contact you so we can put in the show notes, but just kind of any leaving words or anything you want the audience to

Dr. Zoe Smith 55:51

know. I mean Action Lab is here and is listening and values things that have often been unvalued. We value lived experiences. We value system centered thinking. We value growth and strengths and we value you. We value people, um, and really want to center people. And so something that's really important to Action Lab is to, you know, we're continuing to build community connections. Um, yes, it's mostly in the Chicago area, because that's The community in context where we serve families, but we also have additional projects that are a much wider audience. And so, you know, if there's anything that you feel like we can do to improve the work that we do, or you have suggestions, or you're just like, Huh? Like what? This is interesting. Like, tell me more. Um, we're, you know, our team is really excited to share this information. We have a lot of social media platforms because we, one thing that's really important to us is disseminating this information and not keeping it in Just research articles. And so that's just really important to us. And if you all, um, you know, you all into the world that listened to Friday Night Soundbites, I am just really excited to hear from you all and learn and continue to grow in community together.

Loucresie Rupert MD 57:29

Thank you for joining us on Friday Night Soundbites. I hope that we have fed your bodies. So mind and spirit, please continue to join us as we discuss topics that center voices that have historically been overlooked and suppressed. Let's tell our stories, learn from them and overcome. Please check out my webpage for upcoming events and services offered and follow me on social media. All links will be in the show notes. See you next time. Thank you so much for listening to Friday night soundbites. If you enjoyed this podcast, please leave a five star review on Apple podcast. This helps that algorithm. Thank you so much. If you have any criticisms or concerns, please email me at email linked in the show notes. We would love to hear from you.