Schizophrenia Reframed: Is It Time for a New Name? (Ep. 138)

For families and those living with Schizophrenia, words matter. Today, we look at what’s behind the diagnosis, why experts are rethinking it as a neurodevelopmental syndrome—and whether changing the name could change lives. 

This podcast episode focused on rethinking and potentially renaming schizophrenia as a neurodevelopmental syndrome. 

Dr. Matcheri Keshavan (Beth Israel Deaconess Medical Center in Boston; Professor of Psychiatry, Harvard Medical School)

 and Dr. Raquelle Mesholam-Gately (Assistant Professor, Psychiatry, Harvard Medical School, Co-Director, Recovery in Shared Experiences (RISE) Early Psychosis Program, Cambridge Health Alliance, Cambridge, MA.)

 discussed their research on renaming schizophrenia, with the most popular suggestion being "Altered Perception Syndrome" based on their survey of 1,200 respondents. 

They explained that schizophrenia may be better understood as a spectrum of disorders rather than one condition, with evidence showing developmental brain abnormalities including excessive synaptic pruning in adolescence. 

The experts described how a name change could help reduce stigma, enable earlier detection through biomarkers, and lead to more personalized treatment approaches. They also discussed the historical context of the current name's origins and shared that similar name changes for other conditions like bipolar disorder and autism spectrum disorder have shown positive results in reducing stigma and improving care.

Thanks for liking and sharing the podcast! 

Links: 

Schizophrenia & Psychosis Action Alliance : https://sczaction.org/

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://randyekaye.com/

Miriam and her book: https://www.miriam-feldman.com/

Transcript

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SPEAKER_03 0:00

We know that words matter. It's not a panacea, but they matter. And if a name change can be part of what leads to improved lives for people with the condition, then why not?

SPEAKER_00 0:12

There is brain plasticity throughout life. So someone in their 30s, 40s, or 50s could still benefit from appropriate treatment just as much as someone who is in their 20s. There is tremendous optimism because people with this illness can respond to the right treatment at any stage.

SPEAKER_01 0:31

This is Randy Kaye. If you've ever encountered schizophrenia, does that mean they have split personality? I don't know. Is it time for a new name and would it make a difference in stigma and treatment and research? Let's find out. Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feldman, Mindy Griling, and Randy Kay. Welcome to episode 138. I'm Randy Kay here with Mindy Gryling. Our third mom, Mimi Feldman, is away gallivanting around Vienna and may check in or may not, but we have two guests today, so it will be a lively discussion. We are three moms, one in absentia with sons with schizophrenia, and we've each written books about it, and we find great comfort and purpose and advocacy. And this podcast is part of it. If you're new to the podcast, welcome. You know, for families and for those living with schizophrenia, words really do matter. Words have a lot of power. And today we're going to look at what is behind the diagnosis and why experts are rethinking it as a neurodevelopmental syndrome and whether changing the name could maybe change lives. And here to help us do that are experts. We have uh known as Kesh, Dr. Macheri Keshevan, MD, professor at Harvard Medical School, and another doctor of the PhD variety, Raquel Meshalam Gately, assistant professor in the Department of Psychiatry at Harvard Medical School. So we have certainly experts in the house. Welcome to both of you.

SPEAKER_00 2:27

Thank you. Thanks for having me.

SPEAKER_01 2:30

Before we jump into this, can you each just tell me a bit about your background and why you're so interested in schizophrenia? Kesh, we'll start with you.

SPEAKER_00 2:38

Yeah, thank you. So I'm a psychiatrist and I have been a psychiatrist for over 40 plus years now. And I got interested in schizophrenia as even as a medical student. I found that this is a condition that uh if we know schizophrenia, we know medicine, we know psychiatry. Because it is such a complex and not at all well understood illness, which has its origins in um, you know, very complex, the most complex organ in our universe, namely the brain. And from my medical student days, I've been fascinated in trying to understand and also help people with this condition. And I have never lost my enthusiasm for uh knowing this condition. And I continue to take care of people with this illness, which is a joy, and I teach people about the illness, and also I do research in the illness from a neuroscience and pharmacological and psychotherapeutic point of view.

SPEAKER_02 3:46

All right. And I will just put in a word here that I served with Kesh on the schizophrenia and psychosis action alliance board, and he is definitely the real McCoy. He brought in other um experts to our board, and he just is working away. And um, so I couldn't say enough good things about him. I'm so glad that you're here and that you're in the field.

SPEAKER_01 4:09

Thank you. And Raquel, you are you one of the other experts? Is that why you raised your hand?

SPEAKER_03 4:14

Yes, because he brought me into that wonderful organization too, and just so grateful. Now you're on the board there too. Wonderful on the board. Great. That's a wonderful community.

SPEAKER_01 4:27

So while we're on the subject, somebody say the website of the schizophrenia and uh psychosis action alliance, the website if people want to know more about it, is it's sczaction.org. SCZAction.org. Okay, that's great because I would not have known that. All right. So Raquel, tell us a bit about your story and how you got interested in schizophrenia.

SPEAKER_03 4:53

Yeah, so um I'm a clinical psychologist with a specialty in neuropsychology. I'm um currently co-directing an early psychosis clinic over in Cambridge, Massachusetts, but also I've been doing research um and teaching for a number of years as well over at Beth israel with with Kesh for a long time. So um I've always been really fascinated by brain behavior relationships and I guess the multiple factors and complexities surrounding why people act, think, and feel that the way that they do. And I think part of that interest stems from me being a family member myself, put that out there, with um people who have serious mental health conditions. Um I also have had relatives with neurological conditions, and my parents have worked in the mental health field. I worked as a uh certified nursing assistant and a dementia unit in a nursing home. So again, I think all of that exposure made me even more interested in this area. And I saw that there was still so much work to be done to help people with a variety of neuropsychiatric conditions, not only in terms of better understanding and treating these conditions, but in terms of advocacy. Um, and I think that the latter part is particularly relevant for people with psychosis, like schizophrenia. Um, I think there's no question that we need to better understand and advocate for people with many health conditions. Um, but we unfortunately still live in a world where there's a lot of stigma that's not always friendly to people with lived experience of serious mental illnesses. Um, and I think that research suggests that stigma has improved for some mental health conditions, like depression, that same level of improvement hasn't occurred for schizophrenia. Uh, there's often so much stigma that people with schizophrenia face, and you know, that's that they feel like they don't have a voice for, or it can lead to marginalization or other inequities. So I think that makes advocacy for people with schizophrenia especially important. And in my job working as a psychologist in a psychosis program in an academic medical center, I feel really privileged that I can not only contribute to assessment, treatment, research, clinical work, but advocacy efforts as well. So it's a very long-limited answer.

SPEAKER_02 7:39

Since you brought up the um the fact that schizophrenia remains the most stigmatized, and this we're discussing, amongst other things, uh, the name change for schizophrenia and then reframing the whole package. Um, when I I remember when I took psychology in my BA and MA manic depression was what we call bipolar disorder. When that name change uh occurred, did that get accompanied with less stigma?

SPEAKER_03 8:11

Yeah, I think there's some research. There's not enough research that's been done yet, but there is some to suggest that there was a reduction in stigma. And the idea is that it's possibly due to dropping the term manic, because there's so many negative associations with that term. Um so just getting rid of that and changing to bipolar disorder. I think it really did.

SPEAKER_00 8:35

Yeah, same thing could be said for the change that happened from autism to autism spectrum disorder and also from mental retardation to developmental disability. Names mean a lot.

SPEAKER_01 8:50

They they do, and yet sometimes when you change a name, it just the stigma gets attached to the new name. But I will say that for schizophrenia, in my experience, people who don't know a lot about it still think it's multiple personality disorder. I believe it comes from the Greek for split mind, but it's not about being two different people. Although I have to say, sometimes I think of my son as two people, one that is in treatment and sober, and one that is not. And I it it, you know, my relationship with him depends on which one I'm getting. So, in a way, but that has nothing to do with the illness. That has to do with whether or not he's using cannabis and whether or not he's accepting treatment. But it is not multiple personality disorder. And I think another reason to change the name is because people hear schiz and think of schism and think, you know, they just think that they don't know what it is. So um, let me ask the first question, and then Mindy, I'll pass it on to you. You know, many people have suggested renaming it, and part of that is because the movies and the media have made schizophrenia such a scary name. And so why did you do this study before considering that?

SPEAKER_03 10:12

Yeah, and uh I'll I'll actually talk to you about a few studies that we did um in this area, but uh I guess I'll start by saying that stigma is one very important reason, um, and that includes both public and self-stigma. But another um primary reason that we did this work is because, like you said, the name doesn't accurately describe the condition. Um we had done a study, this was in 2021, it was published. Uh was a survey project about renaming schizophrenia. Um, so that was one that Kesh and I published along with several of our colleagues, including those with lived experience of psychosis. And it's a group of people that we've been partnering with on a variety of initiatives for many years. Um, so that group, um, because I want to put a big plug out for them, they're wonderful, is called the Peer Advisory Advocacy and Research Council, or the acronym PARC for short. Um, so when we began discussing the idea for the project, there had already been growing international momentum for changing the name of schizophrenia. The name had already been changed in some Asian countries. Um, that includes Japan, South Korea, Hong Kong, and Taiwan. Um, but perspectives about a name change varied widely. And research with surveys was really limited, particularly those done in partnership with people who have lived experience. Additionally, there weren't studies that came from the United States. So we decided that we wanted to measure the opinions of a broad group of stakeholders about the term schizophrenia and possible replacements for it. So um, and and and again, I really want to emphasize that in all phases of this project, we partner with people who have lived experience of psychosis. Um and by doing so, we really gained vital and unrepresented perspectives throughout the entirety of the study. So um I know I'm talking a lot. Let me just quickly say that what we found is that the majority, so 74% of people of the approximately 1200 survey respondents favored a name change for schizophrenia. Um, and additionally, 71% of respondents found the name stigmatizing. Um and, you know, in in later commentaries and review papers that we did, what we concluded is that while renaming schizophrenia can be a complex process and it needs to be accompanied by other public education initiatives, it may be well worth the effort, considering potential benefits in the long run. Um, we know that words matter. It's not a panacea, but they matter. And if a name change can be part of what leads to improved lives for people with the condition, then why not? Isn't it worth it? I mean, why keep a name that the majority of people who have the condition aren't comfortable with, that they feel is stigmatizing and discriminates against them, um, and that they don't feel comfortable seeking out care for. So there's a whole good reason for this study.

SPEAKER_02 13:44

And I'm happy to know that you included uh families, not just uh people that actually have schizophrenia, but you can some people that's their definition of lived experience, but of course it includes the whole family. And I'm glad you included that. So, Cash, um in terms of figuring out how to rename it or what to rename it, is schizophrenia one illness? And what evidence did you find to reclassify it as a neurological developmental illness?

SPEAKER_00 14:19

Yeah, thank you. Let me take the second part of the question first. Um, what evidence exists there for a neurodevelopmental framing of this condition? Uh, let me give you a little bit of a historical background just to build upon the earlier discussion. Why did schizophrenia uh as a term get both um stigmatized and misunderstood for two reasons? Historically, the founding fathers of psychiatry, um the person considered the father of modern psychiatry, Emily Craplin, he used a different name. He called this condition as dementia precox. He was at that time studying Alzheimer's disease in his uh lab. In fact, his student was the one who named Alzheimer's disease as Alzheimer's disease. Alzheimer was a student of Craplin. So Craplin thought schizophrenia is also like a dementia-like condition. So that kind of set the stage for a lot of um pessimism about this illness. Even though in some ways he was right, he said that schizophrenia has a cognitive deficit underlying this condition. He turned out to be right in many um con individuals with this illness, that is the central problem. Then came another important person in the field by name Eugene Bloiler, a Swiss psychiatrist. He um is the one who first na uh used the term schizophrenia. He's the one who led to this uh belief that schizophrenia is the central aspect of this condition is a split in personality. Schizophrenia, if you will. And so that led to the misunderstanding that schizophrenia means split personality, as you were pointing out a bit earlier. So the pessimism from the Kriplinian thinking and the misunderstanding from the Bloiler thinking was were the two um reasons. For a hundred years we have had this kind of a belief among clinicians and among individuals with the illness and their family members. Those beliefs have unfortunately not gone away. That's the historical background. But if you really look back into the history, this is the second part of your question, is it one condition or another, or more than one? In fact, Bloiler had already said in 1912 that this is not one condition, it's a group of conditions. He called it the group of schizophrenia instead of one condition. But nobody listened to him, nobody remembered him until recently, when research is beginning to show that this condition doesn't behave like one condition. There are, you know, no one person is the same as the other person with this with this condition. Some do very well in the longer run, some respond to some treatments, some others respond to other treatments. So why do we want to call it as one condition? So um now the evidence is more and more um uh strong that the there may be multiple multiple conditions that uh present themselves with the characteristic features of what we call psychosis and negative symptoms and so on. So the time has come to consider it more as a spectrum of disorders rather than one condition. He also asked about the neurodevelopmental framing. Now, when Kraplin was uh studying this disorder, he was studying neurodegenerative disorders. Disorders of the brain that when they came, they progressed over the course of time. So that was the mindset. But over the last twenty to thirty years, or maybe forty years, it has become increasingly clear that this illness does not in most cases progress after the first few years. That's number one. Number two, many individuals, or probably most individuals with this condition um have origins or um, you know, alterations that can be traced back to early childhood or even infancy. Many of them have developmental difficulties. Um and um you know, studies of the brain of people with this condition have shown that there are alterations of brain maturation. So there is uh what happens to our brains as we grow up is our neural nerve cells are formed and then they grow synapses. And then as we grow into our adolescence, these synapses have to network with each other and become more efficient. And so that process is called pruning. What has been found in the last uh twenty to thirty years is that this process of synaptic pruning, which is a developmental process, becomes exaggerated. So that individuals with this illness lose too many synapses. At a time when it should be more efficient and just the right number of synapses, they become hyper-pruned.

SPEAKER_01 19:58

So that is going to stop you for a second because this is very interesting, but I had a misconception as I was listening to you, and now I understand it. So you're not saying they have you know, uh at first I heard early childhood developmental problems, and so many of our listeners have children who seemed fine until adolescence. So you're not talking about, you know, it's caused by early childhood. I just want to clear that up. You're saying there's a developmental problem with the way the brain develops later on because of this hyperpruning. Is that correct?

SPEAKER_00 20:35

Correct. Yeah.

SPEAKER_01 20:36

Okay.

SPEAKER_00 20:36

So many of the developmental abnormalities begin in early adolescence. And um, and they may be evident for some months or years even before the onset of psychosis. So that gives both an opportunity and an understanding that this may be a developmental derailment that has begun to happen. And so developmentally informed treatments and early interventions become very, very important.

SPEAKER_02 21:06

So, with that understanding, I'd like to ask each of you if you today were going to rename schizophrenia, what would each of you call it and why? So maybe Raquel, you could start. What would you name it, rename it and why?

SPEAKER_01 21:23

And just so you know we have about 15 minutes left.

SPEAKER_02 21:26

So short at least this one can be short, real short answers. Just tell us why what you would rename it and then a couple sentences, why.

SPEAKER_03 21:36

Not an easy question at all. Um but I think I would lean towards altered thought and perception syndrome. And let me quickly tell you why. The most popular name in our survey study, um, when we were given, we when we gave people a list of nine alternate names, was altered perception. That was the only name in our list coined by someone who has schizophrenia. All of the other names we included were, you know, already like listed in the literature, maybe used in other countries. But so to me, that really says this is something that you know people who have the condition can relate to. It's easily understandable. Um could you say the name again?

SPEAKER_02 22:31

Say the name again that you picked up.

SPEAKER_03 22:33

Yeah, so in our survey, the most popular name was altered perception syndrome. And that's the one you're picking.

SPEAKER_02 22:40

No, yeah, it was a little different.

SPEAKER_03 22:42

I'd add okay.

SPEAKER_02 22:43

Well, how what did you what did you pick then? I missed it.

SPEAKER_03 22:46

Yeah, I would add thought to that as well. So altered thought and perception syndrome. Very good. Okay, cash.

SPEAKER_00 22:53

We'll go with yeah, no, I largely agree with um Raquel. Um, and it it has two components of change. One is instead of calling it a disorder, calling it a syndrome or a spectrum would really reflect the true nature of this condition as being probably multiple entities. You know, schizophrenia as we now know it is more like a fever, which could be caused by multiple conditions. So it's a syndrome.

SPEAKER_02 23:30

Okay, so given that since we're we don't want to we want to make sure we get to the reframing part and what that means. So what evidence or what implications does the renaming, whatever it turns out to be, have for uh research and care?

SPEAKER_00 23:48

Raquel, do you want to go with that first?

SPEAKER_03 23:50

If if you want to take that first, I can add to it.

SPEAKER_00 23:53

Yeah, so what implication does it have for how we care for individuals with this condition? Number one, a developmental reframing would make put to the forefront the importance of early intervention and developmentally informed intervention. Okay, that's an important part. The implication of considering it as a syndrome and a spectrum would mean that the treatment would have to be precisive, precision-oriented and person-oriented. For example, not everybody with this condition would have the same condition, not everybody would require the same treatment. So we need to strive towards precise interventions, the right uh treatment for the right person at the right time. And that requires research into identifying the appropriate diagnostic tests, we call them biomarkers, which might identify people with different conditions and um which which would point to different treatments. For example, in our own research, we have found that the psychosis spectrum disorders may be biologically classified into type 1, 2, and 3. And this is based on biological signatures. And we are currently doing research to see whether type 1 might respond better to certain treatments like clozapine, and type 1 and 2 might respond to cognitive enhancement. And we uh we're still trying to understand what type 3 might be related to, perhaps a combination of environmental risk factors, like even substance abuse, cannabis, trauma, and so that's so interesting.

SPEAKER_01 25:45

So it's not a one-size-fits-all medication rule that let's just see what works. I mean, that is that is the treatment that my son was like. We don't really know what it is until we see what medications he responds to, is pretty much what I heard. And he went through all of them until they found one that worked. So by reclassifying them into types one, two, and three, and for the record, for me, I feel like spectrum has become associated with autism spectrum. I like syndrome better because I think there would be a misunderstanding. It's just become synonymous in the world. I just feel when someone says they're on the spectrum, you already know. So I like, I like, you know, thought and perception perception syndrome, altered thought and perception syndrome. That's my vote, if you want my vote.

SPEAKER_03 26:32

Um and if I could just quickly add to that, Randy, the um that name was used in Hong Kong and Taiwan when they changed the name of schizophrenia. Um, and they found after they changed it to that name, there was less stigma, more people were willing to seek out care. Um, clinicians were more willing to disclose diagnoses as well, just by that simple name change. So that's also what makes me move towards that name as well.

SPEAKER_02 27:08

In reading your paper, I noticed that one of the major arguments against the name change was people would have trouble qualifying for benefits, you know, Medicaid and so forth. So, and you had good arguments against that. How did that turn out in the country you just mentioned? And what's your answer to that criticism?

SPEAKER_03 27:32

Well, uh I'll start by saying that there's been name changes of other mental health conditions, which we discussed before, right? Matnik depression to bipolar disorder, there's autism spectrum disorder, um, intellectual disability, that was renamed from mental retardation as well. So there's precedent for it. It's not easy. There's steps to be taken, but it's been shown that it can be done. Um, and it was obviously done with success in four Asian countries, actually, at this point. So there was Hong Kong, Taiwan, Japan, and South Korea. So that argument is uh specious non-starter.

SPEAKER_02 28:18

Good. Okay.

SPEAKER_01 28:21

I I'm gonna ask a family question. Um, you know, can you share, because many of our listeners are starting on this journey. Mindy and Mimi and I have been at it for decades, but what would you say is the biggest misconception right now about schizophrenia and what do you want families to understand?

SPEAKER_00 28:43

The biggest misconception as I see it, and I see that in day-to-day clinical practice, is often individuals with the illness and family members, once they get a diagnosis of schizophrenia, begin to think that this will never get better. It is uh not a curable illness, it is a habit for life, and so forth. Facts of the matter are not uh not in that direction. We do know, we do see many people get better and have very successful lives. Some others have more difficulties, so with kind of treatment usually, correct? With treatment, usually.

SPEAKER_01 29:22

I mean, there's treatment usually, of course, yes.

SPEAKER_00 29:25

They don't just it doesn't get cured, it gets messed up. It is not an irreversible illness, it is um it is a modifiable, treatable illness. That that is what uh you know the biggest uh uh correction of misconception misconception that we have to make. We have a um, you know, we have a um need to change that perception in the population. It is a lot of pessimism, yeah.

SPEAKER_02 29:50

One thing that um that you wrote about what uh what can we do to get the word out? And I want you to talk about that, but first I want to say um one of the things you talked about was legislation to help with getting the word out. And when I was in the Minnesota legislature in the House of Representatives, when Jim first got sick in 1999, 2000, I authored a bill similar to what I think you're asking for, and that was to have person first language, because back then we did not, we talked about the mentally ill people and that sort of thing. And we wanted it to be person with a mental illness. And um, so I had a simple bill, it was less than a page, and all it did was direct the revisor during the interim to change all that language. That's all it said. So if you could do that nationally after this process to get a new name has been complete, that would be the easiest thing to do. It would just change, you know, some legislator in Congress or state by state, if you can't get them to do it, to just have a simple bill like that to change wherever it says schizophrenia to the new name.

SPEAKER_01 31:08

Yeah. Yeah. I'm gonna throw something else into the mix here because uh um Cash, you mentioned something about diagnosing early. And my understanding is there's no way to diagnose. So, you know, in in terms of it seems these implications can have a huge impact on the early years. People who are are in the prodromal stages, the onset stages, there's been no psychosis yet, but there is developmental issues, as you mentioned, in the brain with this hyperpruning and other things. So, not just the name change, but the reframing of schizophrenia itself. What effect could this have on early detection and early treatment? Is there work being done to catch it earlier?

SPEAKER_00 31:53

Yeah, there is a lot of work going on in the field, um, illustrated by this one major study that is currently ongoing called the Accelerated Medicines Partnership or AMP study, funded by the NIH. It's a big study in partnership with the families and uh industry as well to find the earliest origins of prodromal states to identify you know sub-syndromes within what we call the clinical high-risk syndrome, so that each of these sub-syndromes, which may have a distinct biological causation, might respond to a different kind of medicine, different kind of treatment. It could be psychological or pharmacological treatment. So that is the implication. Uh, the idea that this is a developmental syndrome, the idea that this has its origins probably in late childhood and early adolescence, many months or years before the onset of psychosis, gives us the motivation and the um uh the need to identify through biomarkers uh treatable syndromes, which may be different from one person to the other. Move towards what we call precision psychiatry, move towards identifying the right treatment for the right person.

SPEAKER_01 33:19

Of course, but is this like um just based on observation or is this a blood test or is this a break?

SPEAKER_00 33:25

It's a combination of multiple things. It's a combination of blood tests, uh, imaging, electrophysiology, and also good clinical characterization, good clinical assessment, taking careful histories and doing bedside um uh evaluations, so to speak.

SPEAKER_02 33:45

If a name changes to do all those things, wouldn't that be wonderful? Because my son, too, as Randy's, you know, all we got was try this bed and then that one and then that one. What you're describing would be earth-shaking in terms of changing care.

SPEAKER_00 34:01

Yes.

SPEAKER_01 34:03

What about people who are not people who have are not in the early stages and they've been hospitalized 10 times and they've had psychosis more times than I have fingers on my hands. Is there any hope that a reframing could give them new hope?

SPEAKER_00 34:20

Absolutely. And you know, unlike many neurological neurodegenerative disorders, uh, we believe, you know, what we now call schizophrenia, psychosispectrum disorders are neurodevelopmental conditions, which imply that there is brain plasticity throughout life. So someone in their 30s, 40s, or 50s could still benefit from appropriate treatment just as much as someone who is in their 20s. But it has to be personalized and person-centered care, and that is informed by the individual's biological and psychosocial characteristics in a personalized way, in a personalized precision-centered manner. So there is tremendous optimism because people with this illness can respond to the right treatment at any stage. Thank you.

SPEAKER_01 35:18

Mindy, why don't you bring us home with the last couple of questions? Yeah, so I can and I would say that's what I'm saying. That's over. Kel wants to add something. Go ahead.

SPEAKER_03 35:25

Oh, just very, very quickly. Um, I think another way that it can provide benefits to people who are older in later stages of the illness is by reducing stigma and discrimination by aligning it with other less stigmatized neurodevelopmental conditions. Um, if you have less stigma, it's going to increase treatment engagement. It's going to expand social and employment opportunities. It's going to attract more clinicians to the field, increase research funding. So, I mean, that reduction of stigma itself, I think, can have so many benefits across all stages of the illness.

SPEAKER_01 36:04

It's huge. I'm imagining an acronym, though, like PTSD, you know, ATPS or something, because it's very long to say, but the the fact that somebody would understand what you have in the name of the illness, when if someone says I have altered thought and perception syndrome, somebody knows what it is. So that's pretty powerful. Mindy, go ahead.

SPEAKER_02 36:30

It can it can take a while. I did not know what the new name for uh people with developmental disabilities was. I started reading it and I'm like, does that mean my son, you know, the intellectual? But it then I finally figured it out. Anyway, um, so the to bring it home, what is going to be done to get the word out, to get the consensus, to come up with whatever the new name is? And we have listeners who are activists, so how can we help?

SPEAKER_03 36:59

Yeah, so I mean, I think there's so many ways that people can help. Um, spreading the word about this work obviously is important. Um, using the power of their agency to educate themselves, including by listening to this incredibly helpful podcast. Really, I'm just amazed with the important and powerful work that all of you are doing. Um, this engaging in advocacy, like calling for increased research funding is really important as well. Figuring out ways to reduce stigma, um, just sharing personal stories, as you know, can dispel myths, it can humanize the illness, highlight new findings. Um, they can listeners can interact and seek input from people living with this condition. Um, be conscious of language. I think, Mindy, you mentioned this before. Avoid using derogatory terms, use person-first language. Um, you know, I think challenge others when they make stigmatizing comments or jokes. And also, I think discussing mental health care openly, just like we do for physical health care, can make a big difference. It really reduces shame that stops people from getting help. Um and also I think utilizing resources from organizations like the Schizophrenia and Psychosis Action Alliance, NAMI, the NIMH, sharing accurate information on social media, um, supporting the organizations that are doing all of this work. So I think by combining all of those actions amongst others, I'm I'm sure it can really help to I think change that perception of schizophrenia into just a treatable neurodevelopmental syndrome.

SPEAKER_00 38:53

Can I can I uh make one um suggestion uh that kind of has been forming in my mind in regard to because you asked the name, if we were to rename it, what would we name it? And uh if the community and the multiple stakeholders like an acronym that is like uh you know uh ADHD or ASD or BTSD and so on, I have one which is the Adept syndrome. Altered developmental, emotional, perceptual and thought syndrome. Also, it's important to remember that in schizophrenia there are emotional difficulties as well. Flattening or blunting of emotions and sometimes you know exaggerated emotional responses and so on. Altered developmental, emotional, perceptual and thought processes or syndrome, adept. It's got a positive connotation to it. You know, we want them to be adept, and they will be adept as they get better. So, anyway, that's very important.

SPEAKER_01 40:06

Well, this has been so informative, and thank you so much for your passion for this syndrome and for helping others and for for teaching us something in this episode. Thank you for joining us. Thank you again for having us. Thank you so much for tuning into this episode of Schizophrenia Three Moms in the Trenches. You can help out the podcast and help others by sharing the podcast and by subscribing wherever you get your podcasts and or on YouTube. And remember, you can reach us at mindygryling.com, randy k dot com, or miriam hyphenfeldman.com.