Lindsay Guentzel (00:01):
Welcome back to Refocused. I’m your host Lindsay Guentzel and you are listening to Episode 99: Understanding Cognitive Disengagement Syndrome with Dr. Zoe Smith.
Zoe Smith (00:16):
Originally we saw that CDS was associated with those inattentive symptoms we see in ADHD. And so a lot of the research was first trying to figure out, okay, is this another presentation of ADHD? But what we’ve learned and what is absolutely concrete is that is not the case, that we see people without ADHD who have high levels of CVS, we know that this is separate from ADHD, that it is not another presentation of ADHD.
Lindsay Guentzel (00:48):
Over the past few months, we’ve been talking about the most common comorbidities that can come alongside ADHD, anxiety, OCD and depression. Well There’s, a lesser known comorbidity called cognitive disengagement syndrome that’s been gaining some awareness thanks in part to a video series released in July by clinical psychologist Dr. Russell Barkley. If you are new to the ADHD community, Dr. Barkley is someone you’ll want to check out. He has dedicated his entire career to ADHD research after he started working with children with ADHD in the 1970s. He’s the author of 27 books and more than 280 scientific papers and book chapters. And his work with our community spans five decades and counting. Dr. Barkley is also one of the researchers who has been pushing for a better understanding of cognitive disengagement syndrome, along with today’s guest Dr. Zoe Smith. In early August, I was down the ADHD rabbit hole researching guests for Refocus Together, our project in October where we share 31 stories in 31 days for ADHD awareness month when I stumbled upon the ACCTIONLab out of Loyola University in Chicago.
(02:08):
ACCTIONLab is an organization that is dedicated to community-based assessment and intervention development for youth with ADHD and cognitive disengagement syndrome. They’re currently working on developing trauma and healing informed assessments specifically for black and Latina, Latine, and Latino youth who have been diagnosed with ADHD. These assessments are designed to give young people the support and resources they need to thrive and succeed in life. So at the time I was reading up on CDS through the ACCTIONLab and the work Dr. Smith is doing with her team. My coordinating producer, Phil Rodman, stumbled upon Dr. Barkley’s videos and we both brought the topic to a podcast planning meeting. One of those great minds think alike moments that I love so much. So I reached out to Dr. Smith because I was interested in learning more and she so graciously offered her time to us. Dr. Smith, who goes by Dr. Z at work, is an assistant professor of psychology at Loyola and is the leader of ACCTIONLab, which stands for Advancing Communities Centered Interventions.
(03:18):
She’s also one of the authors of Report of a Work Group on Sluggish Cognitive Tempo: Key Research Directions and a Consensus Change in Terminology to Cognitive Disengagement Syndrome, which was published in June of 2023. So what is cognitive disengagement syndrome? Well, there are 15 symptoms that providers look for when it comes to CDS and they’re grouped into three categories: daydreaming items, mental confusion items and hypoactivity items. We might recognize some of those items as getting lost in thought, staring into space, finding the right words to say or forgetting what to say and being easily tired or sleepy during the day.
(04:04):
One of the biggest issues researchers and providers like Dr. Z are dealing with when it comes to CDS is that the official diagnosis for it doesn’t exist in the DSM-5 yet. So how do you treat something that Doesn’t officially exist? Well, that’s what Dr. Z and her team are working towards every day and we are so excited to have her on the podcast to explore this topic with us.
(04:29):
Well, Dr. Zoe Smith, thank you so much for giving us some time today. I am very excited to dive into this. I know there’s a lot of gray area, but I have no doubt that you will be able to paint a wonderful picture for what we’re talking about here.
Zoe Smith (04:52):
Yes, no I’m really looking forward to it. Thank you so much, Lindsay.
Lindsay Guentzel (04:56):
So let’s, just start with what is cognitive disengagement syndrome?
Zoe Smith (05:02):
It’s so funny because when people ask this question, I always have to pause and think a little bit because, and We’re going to get into this a little bit more. That is the question, what is it? That is the gray area that you’re speaking about. I mean, so cognitive disengagement syndrome was something that a grad student in their dissertation in the 1980s realized that there were these kids with ADHD that had this kind of daydreamy aspect to them and they thought, oh maybe this is another, at the time subtype, now presentation of ADHD. And so the research there kind of stalled. So they looked at it during that time and didn’t the research on cognitive disengagement syndrome, which used to be called sluggish cognitive tempo, did not really pick up until around 2008, the 2010s where a ton of research started happening.
(06:05):
And so this construct, if we think about it in psychology, is a pretty new construct, newly developed, newly understood. And as you said, there’s, so much gray area because of that, because we don’t have the long history that we have for other diagnoses or other constructs that we have for things like ADHD, anxiety, depression. And so what it is this construct that includes aspects of excessive daydreaming, mental confusion, fogginess, kind of like people that are spacing out or you’re not really sure if they’re paying attention to you or they seem to be daydreaming.
(06:47):
And also this aspect of hypoactivity. And so hypoactivity can look like slowed movement, slow behaviors. For example, for kids getting ready in the morning, morning routine is something that’s often really hard for people with high levels of CDS because it just seems to be something that it’s like slow moving, sleepy appearance even if they don’t have any sleep difficulties. And so CDS is also associated with a lot of different things. And so CDS is associated with mental health diagnoses, academics, social skills, less is known about things like executive functioning, neuropsychology. So there’s a lot to it and I know we’re going to dive more into all of those specifics, but what it is it’s a construct and there’s these three aspects, excessive daydreaming, mental confusion and hypoactivity.
Lindsay Guentzel (07:49):
I’m curious what we know, and you mentioned the gray area, but what is concrete right now in regards to what we know about cognitive disengagement syndrome and what’s still being debated?
Zoe Smith (08:02):
What is concrete is we know that all the initial studies we’re trying to figure out, is this another aspect of ADHD? And ADHD or attention deficit hyperactivity disorder has three presentations. There’s presentation of inattentive presentation, hyperactivity impulsive presentation, or combined presentation. And originally we saw that CDS was associated with those inattentive symptoms we see in ADHD but not necessarily associated with or only negatively associated with hyperactivity and impulsivity. And so a lot of the research was first trying to figure out, okay, is this another presentation of ADHD? Do we have a CDS presentation of ADHD? But what we learned and what is absolutely concrete is that is not the case, that we see people without ADHD who have high levels of CDS, we know that this is separate from ADHD, that it is not another presentation of ADHD. I mean that was a pretty recent conclusion I would say a 2016 meta-analysis by Dr. Steven Becker and a lot of other people. That was what determined, okay, we can stop figuring out if it’s separate or part of ADHD or separate. So that’s a concrete thing.
(09:21):
The other concrete aspects that I touched on a little bit was that it’s definitely associated with inattention as well as more associated with things that we in psychology call internalizing. So things like anxiety, depression, withdrawal, things that we see in kids and adults that are kind of more internal mechanisms. Whereas when we think of ADHD, we often… And this is also a stereotype which has been a problem in the ADHD world, we often think of more externalizing aspects of ADHD, more observable behaviors where CDS it’s much more internal. And so that also leads us to know that we should be incorporating self-report, getting the person’s perspective on CDS because again, which again, I don’t necessarily agree with in the ADHD world, but historically because particularly younger kids with ADHD struggle to sometimes notice their ADHD symptoms.
(10:25):
And so historically we’ve been asking parents and teachers, hey, asking the 18 symptoms of ADHD to them and not really including self-report. And so because we thought this was a presentation of ADHD, we were asking parents and teachers and it wasn’t until very recently that we started thinking no, if this is not associated with these observable behaviors, if these are associated with things that are internal, maybe we need to go, like internalizing people do like anxiety, depression and ask the kids themselves, ask the adults themselves what it’s like having these symptoms. And so one thing that we do know is that we should also be including self-report when we’re assessing for CDS symptoms. So separate from ADHD, associated with internalizing, not externalizing and should be including self-report. What’s debated is almost everything else. Big one is the etiology and it’s, not necessarily that it’s debated it’s just unknown.
(11:38):
We have very few studies that have looked at neuroimaging, heterogeneity, twin studies, all the things that you kind of want to look at to understand what are the mechanisms that are causing or associated with cognitive disengagement syndrome. There just hasn’t been a lot of work on that and that’s because it’s such a recent phenomenon. Okay, I’m going to go back on that. It’s not a recent phenomenon. It’s a recently observed phenomenon. As everything in our world, it’s always been there. We just maybe didn’t know about it before or didn’t realize it or weren’t studying it in this very specific way.
(12:23):
And so we don’t know exactly what causes CDS and what is definitely debated and still has not been… Many people don’t really even have an answer of where they fit on this debate is diagnostic status, whether CDS should be something that’s included as a diagnosis like ADHD or whether it should be included as maybe a specifier for multiple diagnoses or a trans-diagnostic construct, kind of like emotion regulation affects anxiety, depression, ADHD, ODD, all of these different diagnoses. And that is very much a debate and there is still not an answer. And I would say almost everyone who is a researcher and studies this will not give you what side of the debate they’re on because they’re not sure yet. I think most people are not sure yet.
Lindsay Guentzel (13:22):
So let’s, pretend I’m a patient and I come into see you. What would it be that would spark this thought process for you that you would want to talk with me about cognitive disengagement syndrome. What are the underlying things that would come out? Keeping in mind that I don’t know that if I went in and someone was like, well what’s going on in your life that I would say, well I’m having all of these daydreams, because I don’t think that most people maybe think of daydreams as something that could be connected to a bigger issue.
Zoe Smith (13:54):
It’s kind of hard because I’m a CDS researcher, I always screen for it. But let’s pretend I didn’t. Let’s pretend I’m not screening for it. Things that would make me think as a clinician, oh maybe we need to learn more about this is if I’m asking about when you’re at work, how do you focus, how do you pay attention? And often that does start to bring up, oh, sometimes it’s hard, sometimes I kind of lose my place or lose my train of thought or sometimes I’m looking out at the window. Those kinds of things that kind of lead me to think, okay, maybe there’s something else going on here. Being tired. So daytime sleepiness is associated with CDS. So if Someone’s telling me, you know what, I get eight hours of sleep, I eat enough calories in the day, but I’m still tired, I’m still exhausted.
(14:49):
Okay, and let me think about that because that’s also associated with CDS. But yeah, no it’s really, really hard. And we don’t have this great realistic way to grab at someone who’s experiencing that. I’m a child and adolescent psychologist, so often I’m asking the parents and the kids questions like this. And so with a parent I will ask, do they tend to space out? Do they zone out? And I’ll ask a person that too. Do you zone out all the time? I think that’s a really nice question. If clinicians are listening and are like, I can’t give a 15 item measure to every single person that I see. Okay, let’s ask about zoning out and spacing out particularly for kids and teens because that, although it may be not professional language is really what we mean about that excessive daydreaming. And then also something that we hear a lot from parents is that people with high rates of CDS tend to be hypoactive, not that someone isn’t involved in a lot of things.
(16:02):
We have kids with high levels of CDS who are doing the most, going to sports practice, are leaders, are doing everything and excelling academically. But it’s more like the time it takes to do those things and get ready for things. It’s like, come on Let’s hurry up, let’s hurry up, let’s hurry up. It’s like, Lindsay, come on, come on let’s go let’s go let’s go let’s go let’s go. And some parents will feel like they’re being disobedient or they’re not listening to me, when really there’s something else going on there. And they’re just disengaged from their environment, hence cognitive disengagement syndrome. And so it’s just not hitting you at the same level as the person saying, let’s go let’s go let’s go let’s go. Does that make sense? I don’t know if I fully answered your question, if I’m being honest.
Lindsay Guentzel (17:01):
No, absolutely. I think It’s just probably really hard because this is something that’s not very commonly known about yet. And there are so many crossovers with ADHD, which I want to touch on right now. This idea that you can have ADHD and also have cognitive disengagement syndrome, but you can have cognitive disengagement syndrome and not have ADHD. But a lot of the… For example, being tired during the day, very much something that can be connected to ADHD for a different reason than I imagine with CDS. So how does it affect the debate with ADHD? And I imagine that this means there are a lot of people who have been misdiagnosed because they would fall into the inattentive category for ADHD, but really it’s this whole other issue that isn’t being addressed.
Zoe Smith (17:56):
Yes. So again, we have very little information about etiology of CDS, but the few studies that we do have have shown that there are differences in the attention networks in our brains that affect ADHD versus affecting CDS. So for example, with… I think that’s really just one study, so we say this with caution, is that higher levels of CDS was associated… I actually need to remember this, posterior cortex and areas around the dorsal attention network. So these are regions that are focused on attention and switching and associated between aspects of environment and motor responses. And so these are areas of the brain that affect people and you can see that inattention but it’s in a different way than ADHD, which is much more frontal parietal focused. And so it’s much more focused on executive functioning, difficulty with time management and organization, and external stimuli where CDS is much more internal stimuli.
(19:11):
My biggest example that I like to share with people first learning about this is I have a kid in my classroom and we are doing independent classwork. And a kid with ADHD is sitting there trying to do their work, but the person next to me is breathing heavy and I’m so distracted by that noise and then I look out the window and there’s kids playing and I’m like, oh my gosh, why don’t I get to go play. And now I’m just looking over there, maybe I get up and go to the window and then I get in trouble, then I sit down but I’m not ready to do the work. And so all these external stimuli are affecting me. Whereas with CDS, you might have a kid who is just staring at the paper looking like they’re concentrating, but they’re completely disengaged with their environment and not focused on what they’re doing.
(20:04):
And so They’re also not doing it, but these are the kids that get missed because they’re not doing those observable behaviors. And so that’s something that has been difficult to think through about how to really recruit and find people that have these high levels of CDS because when you see it, you see it. But every time I talk to… So I’m part of a clinical psychology program, I talk to students about this and they’re like, oh I know what you’re talking about. But I think for the public who doesn’t have access to seeing a ton of kids or a ton of people, it is going to be much harder to notice the differences between ADHD and CDS because it really has to come from the person. We have to ask them what’s going on and what is affecting their attention and ask a lot of questions. And unfortunately our mental healthcare system or just general healthcare system just really doesn’t have the ability or infrastructure to do that right now, which can be really frustrating.
Lindsay Guentzel (21:19):
What does testing even look like for that? So say for example you have someone who comes in and they’re like, I was diagnosed with ADHD and now I’m learning about cognitive disengagement syndrome. Can you test to see how the brain fires in those situations or is it all really just having a conversation with someone and fine-tuning the diagnosis?
Zoe Smith (21:40):
Right now it’s a conversation. So one of my big research areas is looking at very comprehensive assessments and so what we tend to do to kind of figure out ADHD versus CDS or both is really focus on that clinical interview as well as doing an interview very much about the whole person. I want to know who you are at school, who you are… I work with adolescents. So for adults it can be at work. Who you are with friends, what you’re like with your parents and then asking parents those questions and getting to know a lot about the environment and how they interact with their environment. So the working group paper where we actually came up with the name CDS because for a long time sluggish cognitive tempo was the term that’s been used. What we reported was that there’s, these 15 items that we would recommend people to use when assessing for CDS executive functioning and things like neuropsych assessment, which I do as part of my assessments.
(22:52):
There’s not going to be this clear, oh if you do this on the go, no go task, you definitely have CDS. But if we get that, if we see that someone’s less impulsive difficulty with switching and sustaining attention that is more related to CDS in addition to that interview and talking about the environment and then behavior observations, that can be helpful. But as with most psychological constructs, there’s not just one like ah, we can do this test and know exactly what aspects, what’s going on in your brain. And I don’t know because psychology and comorbidities are so complicated and complex, I’m not sure that that ever will be the case.
Lindsay Guentzel (23:40):
You touched a little on the differences cognitively between ADHD and CDS and I’m wondering if you can share what we know about any of the demographic differences between the two.
Zoe Smith (23:51):
To be honest, we don’t know much, but I think that’s a problem with how people have researched it. So the way we psychologists tend to look at that is look at just descriptive. Just seeing, oh we have 70% boys in this ADHD sample and that’s it. Or they use gender as a moderator in analysis and like, oh it didn’t moderate the analysis so there’s, no gender differences. But what we know in reality is that that’s not the case. So like I just said with masking, girls tend to mask at higher levels than boys because they’re told that behaviors like ADHD and CDS are not allowed, where boys are told that’s just being a boy. So that masking really plays a huge part in these differences. But in research what keeps popping up is there’s not that gender moderation. We’re not finding that effect in most studies, some but not most.
(24:56):
But the thing that has been happening, and I think It’s because of the association with CDS and ADHD in attentive presentation is that we are seeing more gender parity if we’re looking at the binary of gender. We’re seeing more gender parity and including boys and girls than in ADHD studies. But I really think that that’s actually because ADHD studies have not done a good job of recruiting girls, that have not done a good job of being inclusive with girls. Whereas with CDS research, I think it’s usually been focused on those more internalizing areas and I think that that has helped recruit more girls into these samples.
(25:40):
So the answer is there’s not a ton of demographic information right now. There’s a few studies if we’re not talking about gender that looked at socioeconomic status and maybe being associated with CDS, but then I just argue I’m like, okay, well yeah, having oppression related to classism is going to affect every diagnosis. So I guess the answer is we don’t know a ton about different demographics and the way we’ve done it isn’t the best way because in psychology we look at a lot of individual factors instead of system level factors in diagnoses. But the short answer, I know I keep saying this, but the short answer is, not really demographic differences but there are nuances to that.
Lindsay Guentzel (26:28):
I’m wondering what we know right now about cognitive disengagement syndrome and some of the comorbidities that can come alongside it.
Zoe Smith (26:35):
I think there’s four or five, I wanted to say strongest comorbidities, but that’s not the right word. I guess highest prevalence rate of comorbidities are ADHD. So despite that being separate, ADHD in a attentive presentation in particular. Depression, so major depressive disorder, persistent depressive disorder. Anxiety, so more typically generalized anxiety disorder or social anxiety disorder, not really specific phobia or things like that. And then autism spectrum disorder. So I think that was four diagnoses that we see the most with people with high levels of CDS. We see much less on the externalizing end where there’s behaviors that are more external or oppositional or things like that. It’s much more internalized things.
(27:25):
The other thing that we just haven’t done a good job of researching, but my team and I really suspect and have done some pilot analysis on this is that trauma, childhood trauma and adversity as well as PTSD will likely also be associated with CDS and be a comorbid diagnosis. But there just hasn’t been a lot of studies including trauma in the ADHD world or the CDS world yet to really understand, okay, this is also a potential comorbidity. But the reason that me and my team think that is that disengagement, that disassociation aspect of trauma, the disengagement aspect of CDS are very similar. And so when we do our interviews, that is something we need to figure out. Is this something that’s happening all the time? Is this happening during a time when traumas have been triggered and that’s an important question in discernment that just a lot of people haven’t had the chance to include yet in CDS work.
Lindsay Guentzel (28:37):
I’m curious how we treat cognitive disengagement syndrome right now. What does that look like for a person?
Zoe Smith (28:43):
As I keep saying there’s, not a lot of research on this. So there has not yet been a intervention or therapy that has been created for people with high levels of CDS, but there have been a few studies that have looked at and found positive results. So one was the class study who was Dr. Linda Pfiffner and colleagues, which was a behavioral program, like a school home, very intensive program that had a lot of different aspects to it and it was created for people with ADHD or kids with ADHD who are in elementary school. They found that through this very intensive intervention that CDS symptoms decreased.
(29:32):
My actually dissertation study was looking at an ADHD sample of middle school students who had an organization time management and planning skills intervention at school. So that looked like organizing your backpack, doing a study schedule for the night or how to do homework and those kinds of things, time management as well as a more behavioral homework intervention, which was like you get a cotton ball for every minute you’re focused on whatever homework you’re doing and if you get X amount you get a reward kind of thing.
(30:10):
And both of those found that there were lower levels of CDS at the end of these interventions and those were much less intensive. They were about 20 minutes, I want to say it was 11 weeks in the schools. There’s been another study that looked at more behavioral sleep intervention, which again found lower levels of CDS symptoms. So the answer to treatment right now is a little bit of all of those probably could help and we really need to individualize treatment for… And this is true for all constructs and diagnoses that we should really individualize it. Things that researchers, including myself but also a lot of wonderful colleagues have thought of is mindfulness or attention checks might be really helpful.
(31:03):
Thinking about that disengagement from environment, mindfulness helps create that muscle of awareness and so we think that that might be something that would be really helpful. And attention checks, which was kind of part of the intensive behavioral intervention, they included attention checks. Oh Zoe, did you hear what Lindsay just said or can you tell me what Lindsay just said? And if I was paying attention I could. If I didn’t, I couldn’t and it was just you would get points for attention checks. So things like that might be helpful. I also very much imagine, and this has not been studied yet, that cognitive behavioral therapy similar to anxiety and depression, like reframing thoughts, behavior activation. So that means engaging in pleasant activities for kids that are showing withdrawal symptoms as well as potentially social skills groups. I think all of those might be something that would be helpful, again, depending on what is distressing the person at that moment.
(32:13):
The other thing that I’ve done with families is because the morning routine is really frustrating because it’s hard to get someone out of bed that doesn’t want to get out of bed, that’s feeling tired. But then also if you add in that hypoactivity that some people with high levels of CDS experience, that’s going to make this morning really, really hard and that’s particularly hard for the group of people that I work with who are teenagers who have to get up very, very early, disrupts their sleep cycle and is not great and now they have to do something really quickly. And so we do a lot of sleep hygiene, morning routine kind of work to help that be less distressing to the teen and to the parents and just in general to the whole family dynamic. And so those are some things that when I talk to families when we see that there’s these high levels of CDS and then looking at what impairment they’re experiencing or what’s distressing them, we then kind of recommend those kinds of therapy modalities.
(33:15):
Medication also has not really been studied that much. There are some studies that show that methylphenidate like a stimulant medication for ADHD, that people with both ADHD and higher levels of CDS show that methylphenidate is less likely to work. And so that’s been really interesting, but again, we don’t have enough data right now to say definitively, not going to work if you have high levels of CDS, but it’s definitely a possibility and some people have hypothesized that things like bupropion, which is specifically for things like depression but we found can be really helpful for people with ADHD who don’t respond to stimulant medication very well. We’re hypothesizing, well maybe that would be the case for CDS because of these more internalizing symptoms that are similar to depression and anxiety.
(34:08):
And then the other hypothesis potential like sleep medications because of that sleepiness and tiredness. But again, this hasn’t been studied, we haven’t looked at this and so I recommend people with high levels of CDS who are listening to this, people who are providers who are listening to this is, go through the different levels of distress and impairment and choose an individualized treatment that’s going to make the most sense for that person as a whole person, as someone who exists in a lot of different facets in this world.
Lindsay Guentzel (34:46):
I want to bring this back around to wrap up the conversation because this is a podcast about ADHD and I’m wondering if you could just paint a picture of what it might look like for a person who has both ADHD and CDS.
Zoe Smith (35:01):
What that looks like is a lot of difficulty with sustaining your attention. And it often looks like having difficulty engaging with other people socially. Sometimes with ADHD we hear… or it’s very much is the case that some people with ADHD particularly combined presentation with the hyperactive and impulsive symptoms, we interrupt or have trouble engaging with people because of that impulsivity. But with ADHD and CDS, it’s very much withdrawal. And for example, what I hear from teachers is, oh, they’re not playing with other kids at recess or they’re off in their own land, playing in the grass, looking at a butterfly, which is also wonderful but also can be punished in our society because we’re like, no, you need to interact with people or something’s wrong with you.
(36:04):
The other thing when I talked about attention, it can be really frustrating to have both ADHD and CDS as with most things that have multiple comorbidities, impairment tends to be worse. So it’s harder to do well academically, it’s harder to engage with others socially. And we tend to see higher levels of anxiety and depression as what I usually tend to call secondary diagnoses. So because of your masking, because of these messages that you’re getting from parents and families and friends that you’re not doing what you’re supposed to be doing, there tends to be a lot more rumination and difficulty kind of getting out of stuck thoughts or negative thoughts or negative thought spirals. And so for people with ADHD and CDS, there can tend to be a lot more impairment. But on the other side of it, people with ADHD and CDS can be really cool, big thinkers, researchers, people that can really innovate and really think through a lot of things and connect different areas that are not the way that other people think.
(37:22):
And so yes, there can be a lot more distress, but it also can look like, wow, you’re the person who came up with the really cool science fair project, or you’re the person who wrote this really cool short story for a magazine and wow, we never would’ve thought of something like that. And so there are these really cool aspects to that. There are these really positive aspects. And at the same time, because we live in a world that isn’t super neuro diverse friendly, there tends to be more impairment, there tends to be more difficulty with what we would call paying attention, more difficulty with interacting with people.
Lindsay Guentzel (38:07):
Dr. Z, this was such a great conversation. There is so much here to dive into and you explained it in a way, the best you can with the information that you have. And I’m so grateful for your time. Thank you so much for sharing that with the Refocus community.
Zoe Smith (38:22):
Thank you. Thank you so much for having me. This was a really great conversation and got me thinking about all the things that we need to keep doing.
Lindsay Guentzel (38:35):
Obviously there’s a lot working against people when it comes to getting a diagnosis for cognitive disengagement syndrome and it’s important to acknowledge that there are some people who have been misdiagnosed because so little has been known about it. Dr. Z did stress that, like many comorbidities that come alongside ADHD, masking is something that providers and researchers have to take into account when assessing patients, which adds to the struggle. Without a formal diagnosis, that brings up the question when it comes to assessments, what are providers looking for?
(39:12):
We mentioned the three different categories at the top of the show. So there are daydreaming items which include well daydreaming, getting lost in thought spacing or zoning out, appearing lost in a fog and staring blankly into space. Next, there are mental confusion items like losing your train of thought, difficulty putting thoughts into words, forgetting what you were going to say, getting thinking mixed up, being easily confused and slow thinking. And finally, there are hypoactivity items of being easily tired or fatigued, having low levels of activity. Behavior is slow and drowsiness or sleepiness during the day.
(39:57):
I’m so grateful to Dr. Z for taking time to explain CDS to us. There are so many questions still to be answered and it’s comforting to know someone with her level of passion is focused on continuing to explore this disorder. She’s also committed to building resources and guidelines to help providers better understand what to look for. An incredibly important foundation while we wait for an official diagnosis to be included in the DSM.
(40:29):
Support for Refocused comes from ADHD Online, a telemedicine mental healthcare company that provides affordable and accessible ADHD assessments and treatment plans to learn how they can help you on your journey head to a ADHDonline.com and remember to use the promo code Refocus20 to receive $20 off your ADHD online assessment right now.
(40:53):
Refocus is produced with the help of this stellar team, managing editor Sarah Platinitus, coordinating producer Phil Rodman and social media extraordinaire Al Chaplin. My name is Lindsay Guentzel and I am the host and executive producer of Refocus. I am so grateful to my production team and I love that I get to work directly with the incredible team at ADHD Online, including Keith Boswell, Claudia Gotti, Melanie Mile, Suzanne Spruitt, and Trisha Merchen-Dunny. Sissy Yee of Berlin Grey is the talent behind our show art and singer-songwriter and fellow ADHDer, Louis Inglis out of Perth Australia created our theme music. We are also so grateful to the support we received from the team at Deksia, including Corey Carney and Mason Nelly. Links to all of the partners we work with are available in the show notes.
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If you haven’t already, it would mean so much to us if you would follow and subscribe to Refocused wherever you’re listening now. And if you’re loving what you’re hearing, send us a note or tag us on social media. Our email is [email protected] and you can find us on social @RefocusedPod. Thank you guys so much for being here. And until next week, make sure to take care of yourselves and because I know we all need this reminder in an effort to reduce the unbelievable amount of stress we all carry around with us unnecessarily. Be a little kinder to yourselves this week.
