Moving Beyond Psychosis: Identity Development and Neuropsychiatric Brain Disease

Dr. Amanda Fialk: Welcome. My name is Dr. Amanda Fialk. I use she/her pronouns. I am a partner and chief clinical officer at The Dorm, which is an IOP and PHP treatment community specifically for young adults with locations in both New York City and Washington, DC. And I am really happy to be here today to be discussing recovery and transformation for individuals living with severe psychiatric illness.

This conversation is certainly timely as we have seen a continued rise in psychosis and mania amongst young adults. And with those diagnoses, often profound isolation. For many of our clients, they say to us that the diagnosis can feel at first like a life sentence, like something that’s permanent and that will define them or limit them forever. And the weight of the stigma and the shame and the misunderstanding can make it really difficult to connect with others or to make it possible to see themselves as anything beyond their illnesses.

So within our community, we’ve certainly been trying to create a lot of programming to help counter this. We created, for instance, a psychosis and mania process group to give young adults a space to share their struggles, to connect with each other, and to begin to reclaim their sense of self.

So we’re super grateful today to welcome Drs. Marotta, Mann, and Dougherty from Silver Hill Hospital, who will share their groundbreaking research and firsthand stories of people who have moved from fractured psychotic states to functional, meaningful, purposeful, and fulfilling lives.

Dr. Marotta is an internationally recognized expert in the treatment of severe psychiatric illness such as bipolar disorder and schizophrenia. He is the director of the Center for the Treatment and Study of Neuropsychiatric Disorders at Silver Hill Hospital. And he is joined by doctors Lisa Mann and Dr. Dougherty.

Dr. Mann is a clinical psychologist who is educated at Harvard University, NYU, and St. Luke’s Roosevelt Hospital Center, and is program director of the Center for the Treatment and Study of Neuropsychiatric Disorders at Silver Hill Hospital.

Dr. Dougherty has a private practice as a certified life coach and has previously worked as a senior research associate to Dr. Marotta at Silver Hill Hospital. She and Dr. Mann co-authored the book, Lives Reimagined: Changing the Course of Psychotic Illness.

So with that said, I’m going to turn the presentation over to Drs. Marotta, Mann, and Dougherty.

Dr. Lisa Mann: Thank you, Amanda. So good to be here. We’re very excited to share with all of you the powerful voices that you will hear. First, I think we need to do a little bit of the proverbial housekeeping. So let me see where my clicker is. We need to screen share with you. Okay, hold on one moment.

Okay, is that working? So again, let’s see. Get that down. No, hold on a second.

Okay. We want you to know that in compliance with ACCME standards for Commercial Support of CME, as the speakers, we do not have any relevant financial relationships to disclose in relation to this presentation.

We also want you to know that our educational objectives are the following. As a result of participating in this session, you should be able to explain how stigma and shame impact identity development and self-worth and recognize how trust strengthens therapeutic relationships with patients, how you can identify types of support that facilitate long-term recovery and functional living, and can describe the complexity of patient experiences with severe psychiatric illness and their struggle to heal.

Okay, so this is a presentation, as you know, about creating identity beyond neuropsychiatric brain disease—the individual road to transformation.

About three years ago, Katharine and I collaborated and the collaboration culminated in the book, Lives Reimagined: Changing the Course of Psychotic Illness. This book describes the evolution in the work of Rocky and the Lodge team at Silver Hill Hospital as they built a model of a different type of treatment of serious neuropsychiatric brain disease.

This approach is grounded in the belief that, as Amanda said, having this kind of persistent psychotic illness is not a recipe for decline and disintegration, but rather with help, you can reshape an identity that is informed by but not defined by your illness.

The mission of this team, as it is with the current Lodge team, was to shift patients from stabilization and move them beyond to lives that were filled with agency and purpose. For reasons that we document in the book, the team—the ability of the team to shift patients positively—was unusually high. And we wanted to share what we thought were the truths about why this occurred, because our belief is that adopting some of the elements of this different approach will really decrease the revolving door of treatment for this patient population.

So in order to write the book, Katharine and I interviewed many of the clinical staff at the Lodge—psychiatrists, psychologists, social workers, residential counselors, nurses—who spoke passionately and with great consistency about what they felt were the critical elements in their patients’ progress and sustained success.

But we also wanted to include patients and families and get their perspective. So we asked a number of the alums of the Lodge program and their parents if they would tell their lived stories, and these are shared throughout the book. We knew that they would be moving. But beyond that, every time we got a contribution, we were struck with the power of their voices. Not only were they courageous in their honesty, but they were so generous in their support of others who were going through similar struggles.

And we felt like we wanted really to hear more from this perspective. We knew what the team felt were central variables to the progress and success of the patients. Did patients agree with the team? Did they agree with each other? So what were the factors that they identified as most important to their move toward a better existence and the transformation of their situation and their lives?

So we, with this question in mind, went to interview a group of patients—some of them Lodge alums, some of them patients who were working with Dr. Rob Laitman, who has a similar treatment approach—to see what they believed were the central variables in their transformations from fractured psychotic states and complete dysfunction to a sense of more cohesive and empowered identity.

We want to set the stage for what’s going to come for the rest of the presentation by taking a step back and reviewing what the basic themes were of the approach that Rocky’s Lodge team took to treatment, because we think this will give you a context and enhance an understanding of what you will hear the interviewees talking about as we go forward.

[Client Stories Redacted]

So, all right. Let’s start out with a slide that basically gives you information that pretty much everybody who is watching today probably knows. Roughly about 1% of our population struggle, suffer with really serious psychiatric disorders.

This is a situation which is really difficult in the context of a broken mental health system. Essentially, we have a situation where for many young people with persistent illness, you have symptoms that bring them to a hospital. They are quickly and often superficially stabilized. There is poor continuity of care. They fall through the cracks. Their exhausted families are trying to pick up the pieces as they decompensate, and then it happens again—the revolving door of treatment.

We actually quote in the book a comment by Dr. Insel, the former director of NIMH, who pretty much states, you know, we were funding all of this interesting scientific research into what psychiatric mental illness is about, and yet it really wasn’t touching the actual people who are struggling with the disease. So we are in a situation which is pretty much a crisis for millions of people.

Before we go any further, we want to talk a little bit about terminology because Katharine and I made a decision as we were writing the book that terminology really makes a difference because of the reality is that language brings with it associations.

And we were repeatedly talking about the biological substrate of these illnesses and felt that there was a serious disconnect because the label “serious mental illness” did not speak to these biological underpinnings. Rather, when you think about serious mental illness, generally the associations are negative. It has—you think of stigma, you think of shame, you think of all the things having to do with a hopeless diagnosis.

And beyond that, the issue of these illnesses being biologically based and having a label that speaks to that is important because they really demand and need parity with other chronic medical illnesses. We live in a world where we know that stage 1 cancer is more treatable than stage 4 cancer. That a course of treatment for cancer, diabetes, cardiac disease can take a long period of time.

Why is it that treatment for these neuropsychiatric brain diseases is limited by insurance to short stays? Why is it that when we look to intervene psychopharmacologically with a persistent psychotic illness that somebody has to fail three courses of typical antipsychotic medicines before they’re given the medicine which works the best, clozapine? So there are a lot of issues that have to do with parity.

And so you will hear us talk throughout this presentation, throughout the book, about neuropsychiatric brain disease or NBD in place of serious mental illness.

Dr. Katharine Dougherty: And I just want to say that, you know, part of that, for all the reasons that Lisa is saying as well, it’s also how an individual can process what’s happening to them and the family and the community. Because when we take it away from a sense of free will and something that actually is under the control of the individual and we actually bring it to its biological base, we change the conversation. We change the framework. It’s not a moral failure.

Dr. Lisa Mann: Not a moral failure.

Dr. Katharine Dougherty: Not somebody’s fault.

Dr. Lisa Mann: Or a family failure. Not somebody’s fault, right.

So basically, I wanted to just mention that in the book, we describe the various different aspects of this treatment approach. And we use the Lodge program at Silver Hill Hospital as the illustration. It’s where the approach was developed. But we do so with a real understanding that the majority of people will not be able to access a program like the Lodge.

So in the book, the way we tried to handle this was that at the end of each of the chapters that deal with different aspects of this approach, we’ve created and pulled key elements and guidelines that people can hopefully apply to their navigation and their development of care for their loved ones.

We understand as we’re talking about this that for all of us, all of the ideal factors rarely come together. And so there are obviously ways in which people have to adapt to their circumstances, but we’re talking about, I guess, an ideal scenario.

So to begin with, you need, for people who are struggling with persistent psychotic illness, you need a safe holding environment where the work is going to take place initially. The patients at the Lodge were not at the most acute stage of their illness, but they were psychotic when they moved into the Lodge program. And so when you’re working with this kind of illness, it’s a long process.

Extended stays in some place where people can develop trusting relationships, where medication trials can be undergone, where a variety of different kinds of interventions, multifaceted interventions can take place, is an important aspect of the experience. It may have to be in somebody’s home. Ideally, it would be in some kind of a residential setting.

Very important when we talk about this approach is the idea that there are basically three anchors to this approach to treatment. Trust and relationship are really the building blocks of this approach. Along with that, medication, hopefully sobriety, counters brain dysregulation, sustains stability. And then a multifaceted approach to interventions to help people re-engage, learn daily living skills, develop a sense of agency, and eventually develop social connection. But at the hub is relationship.

At the hub of this approach was the team—a team of people who were willing to take on cases that other people deemed were hopeless. Every person coming into this program, every person that clinicians work with was approached as a puzzle.

Diagnostic labels were generally left at the door. Clinicians looked at constellations of symptoms rather than a diagnostic label. And they were willing to take calculated risks to move people from a place where they were stuck to shift symptom pictures to something that were more tolerable.

One of the philosophies behind all of this is, don’t miss what’s right in front of your face. And critical piece of it, and Rocky’s going to talk about it now, was that in doing this work, often assumptions were made in the years coming up to the point where a patient entered the program. And so they were looked at in a particular way, in a particular box. There was a lot of out of the box thinking that occurred at the Lodge with this clinical team.

And as I said, essentially the first thing was taking a look at the biological and the underpinnings of what all of these symptom clusters were about. So…

Dr. Katharine Dougherty: And I just want to say, you know, so we’re talking here about connection and the relationship. And so throughout the book, we do have to focus on Dr. Marotta—Rocky—and his leadership and his art of healing. And I think in terms of anyone, you’re looking for that. You’re looking for someone that you can have that deep connection with and that has that trust and that leadership and that collaboration with other members of a treatment team. And that’s really important.

Dr. Rocco Marotta: Well, I just—I’m struck there. They were lead clinicians. And all the psychiatrists, at points there were three to four psychiatrists on the team. They weren’t residents. They all had 10 to 20 years of experience, which early on in Silver Hill, you couldn’t even be on the staff unless you had 10 years after residency. And the philosophy was not to miss something.

And so we were all—that group and the people with us was trained to always think carefully about what you might not have noticed or what was being shown to you almost as a tease. And you were—you don’t get stuck in the textbook. Think about all the possibilities.

And so that came, I think, from being trained at Cornell at Payne Whitney. And that was a very long time ago. But when those things are beaten into you, they stay with you. So I just want to say it’s not about me. It’s about a history of training going back for generations.

And the team—is to be fearful that, you know, Jesus, that the truth is in front of you and you don’t even see it. And my experience has been it happens over and over again. Even yesterday it happened yet again. And that’s just the way it is. But I’ll keep quiet because—

Dr. Lisa Mann: No, not at all. I just want to add that one of the reasons that working in a team is really at the core of this kind of approach is because the work is long and it’s hard, but it involves sustaining engagement and sustaining connection with your patients.

And while Rocky is somebody who, for example, will take a telephone call at all hours of the day and night, the majority of us are not able to do that all the time. And when you have a team that works collaboratively and has developed relationships as a team and individual members of the team with patients, that kind of sustained connection can be basically shared.

And that’s, I think, very important in terms of work once somebody is post-discharge too, is the development of a team allows the sustaining of connection in a way that isn’t always possible if you are working by yourself.

Dr. Rocco Marotta: And it goes back, you know, the esprit de corps of the Italian—the Italians talked about themselves in French—so that it’s a team working together and the morale of the team allows them to interact with and increase the morale of the patients and their families. So it itself generates energy that is for the good of all.

Dr. Lisa Mann: Okay. So, Rocky, can you talk a little bit about the initial evaluation of patients because this is—

Dr. Rocco Marotta: Well, I think what’s changed over the generations is that the evaluation of patients has gotten sloppier and sloppier because it’s being dictated by algorithms and by insurance companies. And because of that, it’s considered an unnecessary expense to really think carefully and give it enough time.

So one of the good things for us, of course, is that we see people who failed multiple treatments, and all the previous failures—that’s an enormous amount of information, right? And then we fight very hard to get permission to get EEGs, get MRIs, to look for inflammatory diseases, to look for infections, to really make sure we’re not missing something.

Which is not to say we don’t believe in these—that schizophrenia exists—but we want to make sure that we’re not missing something. I mean, just last night, we found a temporal lobe epilepsy in a patient who was diagnosed as being a histrionic borderline for 10 years. And we did four EEGs to find it. Okay? Because we knew something was wrong.

And so at my age, I’m allowed to, you know, get my way, which is good. But I think other clinicians have to be willing to fight for it too.

So in the old system, the focus was on a biopsychosocial model. So there was biological, medical, brain influences, but there also the social life, the family life, and the life of the community, and the politics—everything seemed to be critical. Maybe that’s because I’m a child of the ’70s, and I was at Berkeley in the summer of love. But it’s just the way we were. We just took that for granted.

And I think those of us in the team who are older brought that mindset with us, and that we’re searching to find ways to get people better, to salvage as many patients as possible. So we think like neuropsychiatrists or neurologists and neuropharmacologists as well as agents of change.

Okay. So this is just a mnemonic, but this is our way of thinking. And over a 20-year period, it drove us to not pay attention to the pharmaceutical companies as much and to rediscover that medicines from the past were often more effective.

So this is like one of the things we use for many patients. We use clozapine, which is considered a dangerous and hard drug to use. But the data from the 1970s and ’60s says it’s the best, and all the data today is. So in Europe, it’s a first-line drug, and in the United States it’s the fourth or a fifth-line drug. And it’s not expensive. It’s the cheapest, which tells you something interesting.

And then we use medicines like that, and we mix other tricks that we’ve developed over a period of time. It’s hard to do, you know, the kind of research that journals want. We can’t do large studies to compare one thing to another because of the illness and the complexity of treatment.

But we take treatment failures and try to get them better. Not all our patients are on clozapine by a long shot, but many of them are, and that has been an option for many of them. It’s quite remarkable. I mean, I wasn’t raised to believe in these things, and it’s just a matter of experience.

But again, to get a—say to get a young woman or a young man who was in hospital for five—in and out of hospital for five years—to be able to get through college, to get a graduate degree, you may use four or five medicines. You may commit the sin of polypharmacy, but it’s what works. And so we focus on what works, not on diagnoses and not on guidelines published in books.

Dr. Lisa Mann: And again, I think it’s important to say that the aim of treatment is not just symptom stabilization, right? It is the development of a sense of agency and social connection to the world around you. So for example, clozapine is probably the best antipsychotic in terms of dealing with some of the negative symptoms of psychotic illness, but there are residual social issues and interconnection issues that still need to be addressed once symptoms are stabilized. And so this team has—

Dr. Rocco Marotta: So it’s not about a rating scale—a patient getting better on a rating scale. It’s about a patient having a happier life, a meaningful life. And clozapine is also good because it decreases suicide rates. It decreases impulsiveness. People on clozapine maintain sobriety. We’ve talked about that at other lectures. And they live much longer. They live on average 10 years longer than other patients. So I mean, there’s a lot of good reasons to use it. So yeah.

Dr. Lisa Mann: So I mean, you were talking about oxytocin.

Dr. Rocco Marotta: And oxytocin added to it—and clozapine—it’s an excellent mix in our hands. But that does, you know—but I think this—I want to get to the patients.

Dr. Lisa Mann: Okay. All right, we will. Understandably, one of the things that we just want to say, and we’ll go through this very, very quickly, is that we’re doing this presentation. People talk about all of the ways in which patients actually can transform their lives who are struggling with these illnesses. But we have to acknowledge that a significant number of patients with psychotic illnesses have some kind of denial of illness as a piece of their symptom picture.

And what is important in the context of this presentation is to understand that in order to accept treatment, you do not have to accept a diagnostic picture, right? You do not have to say, “I understand that I have schizophrenia” or that “I have some kind of an illness.”

And so we devote an entire chapter to this in the book. But basically, there are a number of different kinds of denial of illness and anosognosia, which is really a biological symptom, neurological symptom of the deficit, and not about in any way a defensive reaction to the loss of potential.

There is also, however, the added defensive denial, which can occur on an individual or a family level, which is a defense against the sense of damage. And there are multiple ways to handle this. But basically, the bottom line is that in order to have a collaborative experience with a patient, you do not have to label the things that they’re struggling with. You have to enter into a relationship where you listen and try to understand what bothers them. And then on a symptom-by-symptom basis, you can address this.

What is also important to understand is that successful transformation is a long, step-by-step process. It doesn’t happen overnight. And it really—you will hear our interviewees talk about the process, which is long and hard, but it involves small steps begetting more small steps, begetting more.

And something that Rocky often talks about is the virtuous cycles of recovery, which is that one small change actually can have a ripple effect and then trigger another small change, and that this process then leads eventually to an ability to move out into the world.

I think I’m going to try to move us along.

Dr. Katharine Dougherty: And so there we—you know, one of the things we’d like to really focus on that we saw in this approach is bringing the family in, because families come in with their loved ones exhausted, feeling isolated, and with such a burden of the illness on the whole family and on their loved one.

And so through this approach, giving families tools to understand what’s going on and making them partners in the treatment team is something that has been essential because they will be the continuity for their loved one after the program as well.

And so, you know, we focus on families as the allies. And then there’s, you know, the peer support models. For example, the clubhouse model. There’s 350 clubhouses in 32 countries. And that’s, you know, where people are able to go to a place where they belong to this clubhouse and they work together and they, you know, see others recover. And so there’s like peer modeling.

And Team Daniel is another wonderful peer support where families get together with their loved ones for social support, and then there’s education and resources. So both families and, you know, peers are very important as we move along.

Dr. Rocco Marotta: Okay. I think this is really critical right now is that to recognize that there are vulnerable periods in a person’s life and young people. And some of the things you’ve already heard that we—and all those stories—exposure to alcohol, stimulants, and marijuana. 80% of the patients that came to us who were severely ill had a history of both marijuana use—not occasional use, but really use—and exposure to stimulants.

And the data coming out of Europe and Canada on rising rates, rising rates of schizophrenia shows seemingly clearly now that the rates of schizophrenia are rising by about 25%. What does that mean? If you have an illness with a near 1% rate, you raise that by another, you know, quarter of a percent. That means in a country like the United States, another 100,000-plus cases of a degenerative brain disease. This is very dangerous.

So we have a responsibility, I think, to help people understand this. And we’re not going to go back to outlawing cannabis and alcohol, but doing something about exposure of 13- to 17-year-olds and 18-year-olds to dangerous substances, which is the story we hear over and over again.

So this is a whole other lecture. But the nervous system is plastic, it’s changeable, people can get better. You can’t keep insulting it with substances which are toxic. And there are some medications which are protective and help in recovery. And that’s an incredibly interesting thing. Again, we—I would love to talk to people about. But there are people who are expert in this, and this is really important. So sobriety is an important factor in recovery over time from these illnesses.

Dr. Katharine Dougherty: So then as we go to look at the future and actually to what we’re going to hear—voices of our participants and how they’ve maintained their stability—one of the things that we really emphasize is stability, you know, has to be guarded through continuity of care. And so discharge is never the end of treatment.

And, you know, we look at step-down programs as something that, you know, is useful. And then the enduring relationship—that’s absolutely key. And you’ll hear it in our interviews with the core psychiatrist and therapist and a whole team in some cases, family. That enduring relationship of trust is absolutely key and important to stability.

And then we also see, as you’ll see in the interviews, participating in society, re-engaging, going to school, finding a job, and finding purpose. Those are things that we see.

Dr. Lisa Mann: All right. So we’re going to now move on to really the heart of the matter. Important to understand also that resilience is not about forgetting what has happened in the past, but recognizing that maybe the plan has changed, but that there are still options and that you still have choices to be made.

And you will hear people talk about this as we go forward in the presentation. They will talk about connection. They will talk about the incredible importance of having hope and the sense that somebody is in their corner and will persist.

You’ve heard from Rocky about the biological rigor that’s necessary to really understand what is triggering psychotic symptoms. And of course, for everyone, because the work is hard, hope is essential.

So here we go. We are going to introduce you to the young people who have given these interviews, and we’re going to talk essentially about various different themes. But before we do this, it seemed important to at least define what we meant by the terms.

So what do we mean by identity? Well, identity to us is multi-layered. There’s obviously the genetics, there’s temperament, there is history. But it involves on top of that memories that become the framework of an internal narrative, internalized feedback, internalized models, and the development of aspiration, goals, fears, hopes, and dreams.

How is identity formation disrupted by psychotic illness? Well, we have to really think about that too. Experiences are disjointed and contradictory as you have fractured experiences. If you are suffering with voices, voices give problematic feedback. You’re hearing in your head things that are disrupting your experience and your sense of self.

There can be difficulty processing information. There probably is difficulty processing. Lack of social connection interferes with internalizing models. Fractured experience interferes with developing self-confidence, goals, dreams, and aspirations.

So what do we mean by transformation? Well, we think of it as both an objective and subjective experience, right? What you see in terms of somebody’s progress and also what they experience as progress or as movement.

Identities informed by, but not defined by, illness. So the development of an identity, a sense of identity outside of your illness. It involves increasing functionality, a sense of agency, a sense of purpose, connection to the world.

And in order to have transformation, you need to have intellectual capacity, aspirations, ability to sustain concentration, and the ability to respond adaptably to stress. All these things have to be aligned, which means pretty much that transformation looks different for every single individual. It is not one particular idea of success or achievement. It is, again, very different for each individual person.

So you want to talk about our sample?

Dr. Katharine Dougherty: Okay, so we had eight people—two women and six men, between 25 and 35, and came from high socioeconomic backgrounds. They participated and consented to be audio-taped and agreed to be part of today’s class. And where desired, we do have someone—in some cases, they asked for their voices to be read by someone else. So while the transcript of the exact words are there—

Six of the interviews are sober, and two drink alcohol socially, and all of the interviews are currently taking clozapine. Most are taking additional medications, and five also take oxytocin. Seven of them fully acknowledge the illness and the importance of medication to their stability.

Dr. Lisa Mann: All eight of them were severely ill in the past. And I say this because you listen to them and they’re so articulate. And so it’s really important to recognize that they all struggled with some or all of the following symptoms: severe OCD, auditory visual hallucinations, depression, inner turmoil, extreme social anxiety, over-sexualized behavior, flat affect.

Five of our interviewees described cannabis and/or LSD as the possible trigger for their severe illness. Some of our interviewees described current breakthrough symptoms such as voices, significant OCD, depression, and social anxiety. And that’s important also, I think, to remember is that our interviewees are not symptom-free, all of them.

Supportive relationships: Two of our interviewees work with Dr. Laitman, five work with Dr. Marotta, and one with a psychiatrist previously connected to the Lodge program. Four have close relationships with therapists in addition to their psychiatrist. All of them have strong family support.

One—and this is written when the interviews were done—one had a partner when the interview was, when the interview occurred. That partnership is no longer. But all have some close friends and speak positively about the importance of community.

All are currently working and/or are in school with differing degrees of specific future plans. Most expressed a desire to give back to others who are struggling.

The themes you’re going to hear as we listen to the voices: shame, isolation, discomfort, importance of relationship and support systems, treatment, various different aspects, framing illness, achieving stability, gaining perspective, some of the challenges that they faced and face, finding a path, and finally changing the narrative.

Let’s start with shame and isolation and discomfort.

[Client Stories Redacted]

So when we did these interviews, we were obviously trying to get to a better understanding of our interviewees’ subjective experiences with ultimately the aim that we could work with more sensitivity and more effectiveness.

I think most of us know that shame is a big part of the clinical picture of various different clients that we work with. And we, as we saw, and we know it involves negative self-evaluation, increasing anxiety and inability to act, increasing withdrawal, isolation, and loneliness.

But I think one of the things that came out of these interviews was a stronger sense of the interference that it—the role it plays in interfering with communication of internal experiences, which I think is really a critical issue as clinicians to understand, that for a number of our interviewees, it was anywhere from months to years before they actually communicated to their doctors or to a therapist what was actually going on in their head.

And so the understanding of that and the sensitivity and the attempt to really try to understand more about that, I think, is—

Dr. Rocco Marotta: Feeling unworthy of being helped often is part of it too, right?

Dr. Lisa Mann: And again, if you feel that somebody doesn’t like you, that of course will exacerbate paranoia and withdrawal. So all of these things are critically important and related to shame.

[Client Stories Redacted]

What are the key support elements that our sample found helpful? Well, to begin with, with regards to the people who work with them, having access to their therapist and feeling that they would respond quickly. And we’ve talked a little bit about the importance of teams in this regard, but I think the truth is, is that all the people we spoke to felt that having a responsive therapist or a responsive doctor was incredibly important to their ability to sustain connection, particularly when they were struggling.

Feeling respected and that their individual story was important. Again, this is a really critical issue, I think, because all of our interviewees talked about feeling that they were being seen for more than just their symptom picture.

Feeling that their therapist had expertise and resourcefulness. People who have persistent psychotic illness have been through just incredible months, years of struggle. And so to have a collaboration with somebody who you feel has not only information that will help you, but the persistence and the hope that they can give to you that maybe the puzzle will be solved is an incredibly important thing.

Experiencing a less traditional doctor-patient relationship. “He treated me as if he was family.” Of course, a lot of us have been trained in a more traditional approach, but I think particularly with this population, the idea of experiencing a sense of connection that goes beyond that doctor-patient sort of structure or boundary is really helpful to generating trust and then the beginning of a sense of what connection can be like.

Feeling that their providers communicated hope. A lot of these people feel helpless, as do the families.

With regards to family support, the sharing of normal experiences. This is really like a small but important thing, you know, that for so many of these patients, they have been the outlier in their family dynamics. And so just the ability to sit and watch a football game or go running with your dad is an important thing.

And being helped by your family to connect with peers and explore different experiences. That, you know, again, as one of our participants said, you know, it’s more than just going to doctor’s appointments. It’s actually having somebody who continues to try to expose you to something that might just click and work.

And then feeling, of course, non-judgmental acceptance by the people with whom you’re working, with people, with your family.

Why are sustained relationships important for this population? Well, psychotic illness, of course, makes the development of trust and connection more difficult because you’ve had a fractured internal experience. And so having a sustained relationship and maintaining a relationship is particularly important.

Clinicians and teams who know their patients well are holders of historic memory and can remind them about past consequences, experiences, identity beyond illness.

Clinicians and teams who are trusted can provide a sense of safety and anchor during periods of disruption. And obviously, their communications of hope are more likely to be believed if you sense in them an ally and somebody who’s sort of been by your side.

Having a partner in the struggle counters feelings of patient loneliness. This is a big issue for our group—a sense of loneliness and isolation. And having a partner in the struggle counters a sense of being coerced, which is particularly important if somebody is struggling to accept that they are ill at all.

Clinicians and teams who sustain relationships are more likely, again, to be experienced as allies rather than enemies.

Let’s hear about our group’s sense of the treatment process.

[Client Stories Redacted]

So some reminders: Be attuned to how your patient frames their struggle. One of our interviewees says, “I felt burnt out.” That was his experience of his struggle and dysfunction. In order to be addressed, doesn’t need a diagnosis.

Take time to get to know your patient. Listening and being responsive to their experience was clearly meaningful to our participants and respectful of their sense of self and autonomy.

Helping to articulate disorganized thoughts was also extremely comforting to people who couldn’t quite get out what they were feeling.

Allowing both humor and compassion into the session. Katharine and I will both attest to the fact that we hear Rocky laughing with his patients all the time.

Supporting parents helps build a bridge back to a patient’s sense of connection to their family. And that is one of the core tenets of the approach is that trying to help people build that bridge back to family and community.

And peer modeling is important and can give perspective, right? It’s good to see somebody else’s perspective and also—excuse the typo—you can see a reflection of yourself. Sometimes when you see that behavior in somebody else, being in a peer situation also reduces a sense of isolation, which is critically important.

[Client Stories Redacted]

Very quickly so that we can have plenty of time for discussion. These interviewees were incredibly articulate about the perspective that they had gained. Not everybody that we work with is that able to articulate these thoughts, but hearing them, it gives us a chance to actually introduce it to people that we work with who haven’t yet articulated it.

Just do the next thing. Work your brain. Be open to everything, even the negative. Respect life. Realize you are not alone. Learn to develop a good relationship with yourself. It takes time to get to know yourself and who you are. Understand what is important to you—social relationships, family, romance, professional life.

[Client Stories Redacted]

So quickly, challenges: losing social competence—that’s huge. Learning to live with symptoms. Thinking all your symptoms are in the past. Seeing yourself beyond diagnosis and losing hope.

Finding a path forward. Well, our interviewees talked about experimenting with different therapeutic tools and modalities to address different types of symptoms. Trying different kinds of medications to address different symptoms—for example, oxytocin to address social anxiety. Getting accommodations if necessary—small but not unimportant. Finding small groups which feel safe to practice social engagement, going to AA, peer support groups, small classes, going to a clubhouse, and staying connected with your treatment team.

All right. So time for conversation.

Dr. Amanda Fialk: We have so many questions and questions that came through. I think, you know, hearing the voices of those directly impacted has been really powerful. That’s certainly showing up a lot in the chat and just a lot of gratitude for the courage that they have in sharing their voices and stepping forward. It’s incredible and powerful. So we’re all grateful to them.

There’s a lot of questions. I’m going to hop around and try to get to as many as I can and consolidate because there’s some that are similar.

But let’s start here. One attendee asked, “Of the eight folks that were interviewed, how many are on clozapine?”

Dr. Rocco Marotta: Of the whole group of these eight?

Dr. Lisa Mann: Yeah, all of them.

Dr. Rocco Marotta: All of them, I think. Okay. All these eight and maybe 70% of the 80 to 90 now through the program.

Dr. Amanda Fialk: Okay. And then their follow-up question is, did you try other antipsychotic medications before clozapine as per insurance requirements?

Dr. Rocco Marotta: Yes, of course. I’d say so. No, but yes, because they came to—remember we were picking up failures.

Dr. Amanda Fialk: Right.

Dr. Rocco Marotta: So they were coming to us and we would often try something else too, but we were picking up people who had been through often years of treatment. And this group, yes, these eight, five or six attempts before us.

Dr. Amanda Fialk: Okay. Okay. You all spoke in the presentation a bunch about how to approach clients who are in denial about their illness. One of the attendees is asking about how to approach, how to work with parents who are in denial and also might have very strong feelings about medications, about clozapine, who are doing a lot of their own sort of Google research. How do you work with these parents when this comes up with the families?

Dr. Rocco Marotta: An enormous amount of time. And you got to kind of get people to understand that it’s—in the end, there—it’s tremendous risk not to do something. I mean, we just came through that where I spent weeks trying to convince a family that we had to go to court and we had to bring somebody in. And it’s just very hard. It’s, you know, it has to be. There’s no way out. If you’re going to do this work, you have to commit yourself to that.

I mean, the one we just finished, she came in three days ago. It wasn’t my patient. It was a consultation for somebody else. And it was—but it took weeks to bring it to that point. And now there’s real hope. I mean, the clinical team is—there’s just such—I mean, to think that you can help somebody that’s on the edge of destruction is, I mean, it’s just about the most wonderful thing that you can go through as a clinician. So you have to look at it—that’s your life’s work and commit to it, I think.

But it—yeah, you have to recognize that people don’t tell you the truth. I don’t know how often, you know, after four or five months, someone tells you, “I didn’t—I never admitted I had voices. The voices tell me not to tell you,” you know? And so you have to learn how to bring it out. Like this little business about, you know, I do this one, you know, I’ve had this really wild experience where, you know, a patient eventually tells me that there’s a voice that tells them not to tell me there’s a voice. I mean, can you believe something like that?

And then there’s a pause and they said, “Well, actually,” you know, and then you can—you get into the system with them and they, you know, and then sometimes you can break their denial and then you can tell the family. When you can tell the family just how bad it really is, then you can move, you know, all the pieces. The hardest piece to move is usually the insurance companies these days.

Dr. Lisa Mann: Yeah. I just want to add that, you know, families in denial are still generally suffering. There’s an experience of suffering. And so the sense of trying to connect with somebody around the experience of suffering without necessarily challenging their frame at the moment is the beginning of a collaboration. And as Rocky said, that often takes little step by little step over a longer period of time, and he rarely gives up. So…

Dr. Katharine Dougherty: And also, I would also just say with families, I think, you know, to go back to earlier themes of shame and stigma, I think it’s so important to reframe. I think with families, it really helps to try to have them have a deeper understanding of—you know, that this is a brain illness. And to the extent that they start to be able to relate to that and actually to talk to people—for families, peers are also good. So talking to other families who have been through this or to someone who can help them feel that they are heard and that they actually deeply understand their experience.

So, you know, building that trust with families as a practitioner, you know, in this kind of work, you know, that might be a therapist, I’m a coach, you know, it’s all different pieces that come together to build that trust so that the family can then move towards accepting something that’s so deeply hard to accept.

Dr. Amanda Fialk: Yeah. No, the families undoubtedly need that same type of peer support as the client and connection and hope and all of that.

Another related question kind of, and we certainly hear this from our families from time to time is, what are your thoughts on, you know, tapering off medications once somebody has become stable and is doing well?

Dr. Rocco Marotta: It’s—I believe in it. We do it. I mean, I always tell stories of a patient that we shared almost 20 years ago who was on five medicines, including, I think, 700 of clozapine. And he’s now on only clozapine, but he takes six and one-quarter milligrams. And he’s a professional who is in our field at the very highest level.

But if he doesn’t take the six and one-quarter milligrams, he will have an episode, right? And there’s no measurable blood level. There’s no reason to follow the rules about things because there’s nothing in them. But it’s—and I think of him as being—it’s like one of those things you meet. I have a number of people who are on 25 milligrams who at one point were on 600 or 700. So we bring them down.

But there’s also tragic stories of people coming off, right? And a lot of them in my experience, you know, if you make that mistake or get mis—we’ve—the hospital as a whole, we’ve—we haven’t published them, but you know, there’s people—when they see somebody looking good, they think, “Well, maybe all they have is OCD or all they have is anxiety disorder, or they’re really just a borderline personality.” And then they take them off the medicine, and then three months later—

Dr. Lisa Mann: Yeah, it’s a terrible situation. And I think—I mean, to add to that, I think the piece of that that you’re speaking to is that it’s a collaborative effort. Usually it doesn’t work so well if a patient on their own just decides precipitously, “Okay, I’m going to go off my meds.” So most of the success stories that you’re talking about have been a collaboration where a patient says, “Do you think we could work on this?” and then it is a titrated experience.

Dr. Amanda Fialk: Yeah. I’ve often found that like a lot of times that question gets asked by parents at the beginning of treatment before the medication has even reached a therapeutic dose, before there’s even symptom relief. So, you know, my response is, “Let’s—like first things first, let’s first help them to feel better, and then we can worry about all that other stuff at a later time.”

Dr. Katharine Dougherty: But just to this point, the theme in the book is also to, you know, we talked about recovery. That word is used, but we shy away from it a little bit because if we’re talking about a brain illness, then there’s a piece of this journey that’s important to accept and embrace that maybe you’re going to have something and that you’re going to need that treatment long-term, right? So, you know, it’s a piece of that.

Dr. Lisa Mann: Yeah, yeah, absolutely.

Dr. Amanda Fialk: This is a big one, and I know that we’ve done other presentations on this topic, but it has come up a couple of times in questions, so I do want to ask it. Can you all speak a little bit as to why drugs like cannabis and LSD may trigger symptoms of psychosis, schizophrenia, schizoaffective disorder, etc.?

Dr. Rocco Marotta: Sure. Just because the way we’ve evolved as biological organisms. I mean, cannabis is a very complicated plant and a number of chemicals there. Some of them are toxic. Some of them are toxic to very specific parts of the brain. And there’s a variability of vulnerability because we all have enormous genetic vulnerability.

So it’s what we see. I mean, it’s just—to use a funny word—it’s empirically true. We know that because there’s numbers. I mean, the data out of Denmark especially is troubling.

Now, you know, there is no illness, there’s no set pathophysiology, say, to schizophrenia. You know, the number of genes involved are thousands. The number of—the variability is just enormous. And we have to try to figure out what that really implies, you know, in terms of vulnerability. Yes, there are people it doesn’t bother. And yes, there are people that does. But we do know that the brain goes through remarkable changes, you know, around puberty, you know, from maybe 12 years of age to 21 or 22, depending.

And to expose it to substances which are toxic, various kinds of toxins, you know, and amphetamines actually cause, you know, neuronal extensions to die back. You know, you wouldn’t want to necessarily play with something like that if you didn’t have to. And cannabis does strange things to the hippocampus and other structures.

So I mean, I always say I was at Woodstock. I really was. And I was at Berkeley in the summer of love, and I lived in a commune. So I wasn’t born with a right-wing animus. It’s these things. I lived through those. And I’d never had really bad experiences, but I saw them happen even when I was young. And so I’m not so surprised, right, with the data.

So if people want to get together and go over it, we have lectures on that. The data from Canada, from Scandinavia, and from other places. The potency is just different.

Dr. Lisa Mann: Yes, right. Hugely.

Dr. Rocco Marotta: Yeah. 1 to 2% at Woodstock, and in the, you know, dispensaries are 40%, and gummies are 100%. So I don’t know what it would be like to smoke 10 joints or 15 joints in a day. It’s just—it’s—you wouldn’t want to have two bottles of scotch a day either, right?

Dr. Amanda Fialk: Right. Can you all address comorbidity between schizophrenia and ASD, differential diagnoses, treatment when there is comorbidity?

Dr. Rocco Marotta: Well, you know, it depends on where you’re trained. I mean, if you were trained in a big autism center, in an academic center, you would say that, well, 40% of people with autism spectrum disorders, right, actually will exhibit the signs of schizophrenia by, say, 21 or 22 years of age.

And then—or if you were trained classically in Europe, you would say that autism, autistic symptoms are part of the core symptoms of schizophrenia—disorders of cognitive association, autism, ambivalence, you know. Hallucinations in the classic German system are not the defining characteristics, right? It’s a disorder of thought and association.

And so they overlap, and the genetics overlap, not that we know how complicated the genetics are, but to say that doesn’t give us an answer. So there’s a whole spectrum of disorders that get lumped into these things, but there also are delineations, right? So it doesn’t mean that if someone has autism spectrum that they’re going to be schizophrenic, right? Or that you can’t have what’s called schizophrenia without being particularly autistic. I mean, right?

Dr. Lisa Mann: And in this approach to treatment, since the focus of the approach is looking at constellations of symptoms rather than a diagnostic category, in some ways it’s not that that in any way is irrelevant, but in terms of how you’re approaching it, you’re looking symptom by symptom. So somebody who has many of the symptoms of autism spectrum disorder is somebody who likely would be treated or placed on oxytocin, for example, to try to counter that kind of symptomatic picture.

Dr. Amanda Fialk: Right. And that leads to the last question I’m going to ask because we have three minutes, but there was a couple of questions that came in about oxytocin and how it works. You know, when it’s prescribed, why it’s prescribed. If you could in three minutes, if you could speak to that just a little bit.

Dr. Rocco Marotta: Really fast. We got into it because there was a literature on treating autism with oxytocin that was equivocal. When I see an equivocal thing, I often say, if buried in the data, it wasn’t that it sometimes helped, it sometimes didn’t. That means it could help some people in certain circumstances, right?

So we began trying it, but we played with it in terms of the way in which it’s given. It’s usually sold as a spray, a nasal spray. You know, it doesn’t always absorb like that. And so we had it made so it could be absorbed under the tongue so we get better blood levels.

And now to do research on it because of the epidemic, we couldn’t do—I couldn’t get into it, but it became hard to do research. But what we discovered was the patients told us it helps us, help them, right? And so one of the women speaking there that you heard, she was the person who convinced me it did something.

We gave it to her, and I asked her how she was doing. She said, “Things were really different.” She said, “Instead of sitting at the back of an AA meeting and not speaking, I now sit in the front and I talk.” And I said, “I could tell something’s different.” I said, “You can look at me.” She says, “Yes, I can look at you and I can look at other people.”

And from that, that’s why she said it’s—my life was changed by—I could—she was then able to go back and finish college. She was able to go to graduate school, and she’s able to be an administrator. And her family says she’s also now a member of the family in a totally different way. And she’s happy. Yeah. Because she can be at ease with people.

Dr. Lisa Mann: And I know we have to stop, but one of the things that I think should be said out loud about oxytocin is there are very few side effects. I mean, we haven’t really talked about side effects and people enduring that, but oxytocin, empirically, it works or it doesn’t work. And people are not always aware of how it works, but observationally, you can tell. But there really is not much downside to trying it.

Dr. Rocco Marotta: Yeah. I mean, the staff, if I don’t tell them we put somebody on it at the houses, they’ll tell me something changed. That they’re chatting with people. They’re going out, right? Hadn’t done it previously, right? But it’s not everybody. All these things are not everybody.

Dr. Amanda Fialk: Thank you. Thank you all so much for not only for this presentation but for the work that you do on a day-to-day basis, the impact that you have on individuals out there who are seeking out help, the field in general. Truly, thank you so much.

Dr. Rocco Marotta: Thank you. It’s a very big team, you know. Yeah, it’s a huge group of people working together.

Dr. Amanda Fialk: Yeah, it’s super impactful. So thank you. And thank you to all the attendees for coming, for engaging in the Q&A and in the chat. I’m sorry we didn’t get to all the questions, but I know there will be more CE events in the future on this topic and related topics.