Tony Mantor: Why Not Me ?
Embracing Autism/Mental Health Worldwide
Autism is a complex neurodevelopmental condition affecting millions worldwide, characterized by challenges in social interaction, communication, and repetitive behaviors.
Despite increasing recognition, there remains a lack of understanding and awareness about the condition.
Mental health encompasses a range of conditions impacting emotional, psychological, and social well-being, affecting millions globally.
It includes disorders like anxiety, depression, bipolar disorder, schizophrenia, and psychosis.
Schizophrenia is marked by symptoms such as hallucinations, delusions, and disorganized thinking, while psychosis involves a loss of contact with reality, often presenting with similar symptoms.
Despite growing awareness, stigma and misconceptions about mental health, particularly schizophrenia and psychosis, persist, underscoring the need for greater understanding and support.
From celebrating neurodiversity to breaking down stigma, we create a safe space for listeners to learn, grow, and feel seen.
Whether you're on the spectrum, a caregiver, or an advocate, join our global community for inspiring conversations and empowering resources that uplift and unite.
Tune in to embrace understanding, healing, and hope worldwide!
Together, we can create a more informed and compassionate society for individuals with Autism and Mental Illness.
Tony Mantor: Why Not Me ?
Jerri Clark: A Mother's Journey Through Loss and Advocacy
Geri Clark, Resource and Advocacy Manager at Treatment Advocacy Center, shares her devastating journey of losing her son to severe mental illness while navigating a broken treatment system that wouldn't help until it was too late. She reveals critical gaps in our mental health system and explains how legal barriers, misunderstood medical conditions, and insufficient family support create deadly consequences for those with severe psychiatric disorders.
• Son experienced his first psychotic break at 19 while attending college on a debate scholarship
• After a four-year struggle with severe mental illness, her son took his own life in 2019
• Anosognosia is a neurobiological symptom where the brain cannot perceive its own illness
• Current mental health system requires evidence of harm before providing involuntary treatment
• Treatment standards based on legal criteria rather than medical need lead to preventable tragedies
• Insurance companies create "ghost networks" of mental health providers who aren't actually available
• Families are often excluded from treatment decision-making despite being primary caregivers
• Prolonged exposure to untreated psychosis causes brain damage and reduces recovery chances
• Some states now include psychiatric deterioration in their criteria for involuntary treatment
• Treatment Advocacy Center works to develop grassroots advocates pursuing legislative change
• Mental health crises receive far less urgent response than medical emergencies like strokes
If you know anyone who would like to tell their story, send them to tonymantor.com and contact us so they can be a guest on our show. Tell everyone everywhere about Why Not Me? The World, the conversations we're having, and the inspiration our guests give to show that you are not alone in this world.
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intro/outro music bed written by T. Wild
Why Not Me the World music published by Mantor Music (BMI)
Welcome to why Not Me? The World Podcast, hosted by Tony Mantor, broadcasting from Music City, usa, nashville, tennessee. Join us as our guests tell us their stories. Some will make you laugh, some will make you cry. Their stories Some will make you laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. Hopefully, you gain more awareness, acceptance and a better understanding for autism Around the World. Hi, I'm Tony Mantor. Welcome to why Not Me? The World Humanity Over Handcuffs the Silent Crisis special event. Joining us today is Geri Clark, resource and Advocacy Manager for TAC, the Treatment Advocacy Center. She's here to discuss her role and what led her to work with the center. She possesses a wealth of knowledge and we're pleased to have her on the show. Thanks for coming on.
Speaker 2:Well, thank you for having me on.
Speaker 1:Oh, it's my pleasure. Can we start off with what you are doing now?
Speaker 2:Sure, my title is Resource and Advocacy Manager. I work for a national nonprofit called Treatment Advocacy Center, and we are a small organization with the mighty goal of advocating for changes in treatment laws and policies and practices that are creating really significant barriers to treatment for individuals with the most severe mental illness conditions, such as schizophrenia, severe bipolar disorder and severe depression that would include psychotic features.
Speaker 1:What led you to get into this line of work?
Speaker 2:I had a son with severe mental illness. His first psychotic break was at age 19, when he was a college freshman with a really promising future. He had been a state champion in speech and debate when he finished high school, went off to college with a debate scholarship and in the middle of his freshman year, experienced a psychotic break that brought him home. He deteriorated extremely rapidly and I started to learn about the inequities in the treatment system and the poorly organized treatment system in the hardest way possible. I didn't know anything about psychotic disorders before my son was in front of me having a psychotic break, so I learned everything I needed to know a little bit too late in the process of trying to guide my son through his illness. He struggled for about four years before taking his own life in 2019.
Speaker 1:Wow, I'm sorry to hear about that. That's a tough thing to take. What led up to this? What did a psychotic episode look like for your son?
Speaker 2:Initially he came home from college deeply paranoid about spirits that were trying to harm him and us. The most profound example I have is he decided that our downstairs bathroom had been possessed and he did some kind of strange ritual in there and then closed the door and made me promise that no one ever would go into that room again.
Speaker 1:It's my understanding that one in eight people around the world have some sort of mental disorder. I also understand it doesn't happen overnight. It often takes a while before it actually surfaces. Now, looking back at your son, is this something that developed over time, or did it happen quicker than you expected?
Speaker 2:Yes and no. There are symptoms of an calming psychotic break and those symptoms are referred to as prodomal. Sometimes they're only evident in hindsight and I would say in my case it was mostly only evident in hindsight, especially because he was a college freshman. So there are a lot of changes happening in a person's brain, in their personality, around that age anyway, but that is sort of a typical age of onset. In hindsight I can see that he was withdrawing, he was starting to be more anxious than he used to be. Again, he also was a college freshman. What college freshman is not anxious, right? So yes, there had been some symptoms.
Speaker 2:My son also suffered from Tourette's syndrome, which he had had from age six, which created a lot of issues for him. He overcame that and, as I said, he became a state champion in extemporaneous speaking. So he really did overcome his turrets in a way that was quite remarkable. I do believe that there were some linkages in terms of his brain having some struggles. You know, was it brain inflammation? Was it some kind of an autoimmune response to viruses or bacterial infections? I still have a lot of questions that were never answered by the medical community, for the most part when he fell ill with a psychotic illness. It happened pretty much all within a week.
Speaker 1:Once all of this had started, what was your pathway to try to get him back on track for better mental health?
Speaker 2:I'm going to tell you what happened to us, but I'm also going to tell you that there is no good pathway for anyone in that situation as a family member. Most communities are going to tell you to take somebody like that or somebody in that situation to an emergency department, and emergency departments are poorly equipped to manage psychiatric crises for a range of reasons. In our situation we had a friend who was a family doctor, who knew us and knew our son and when I called, was willing to see him fairly quickly in order to get him initially medicated. So we were a little bit fortunate in that I was able to get him in. She diagnosed severe bipolar disorder with psychotic features right away and prescribed lithium that did help his symptoms in the short term.
Speaker 2:There's a lot of complicating factors with psychiatric medications, one of which is the side effects are undesirable and my son really didn't like the way the lithium made him feel. But also that family doctor was not the right person to do all of the follow-through care. So we transferred to a psychiatric nurse practitioner who was kind of at the end of her career and not terribly invested One aspect of the severe mental illness treatment system that the general public is probably not aware of is that insurance companies will often give you a list of providers in your network area that do the type of treatment that you're looking for In psychiatry. Those lists are often full of providers who are no longer taking new patients, won't take the diagnosis code, won't treat someone with a very severe condition. So those lists are referred to as ghost networks, and the ghost network that I got from our insurance company had about 30 names on it and none of them would take my stuff.
Speaker 1:What were some of the things they tested him for to create that diagnosis that they ultimately gave you?
Speaker 2:That's a really good question because I don't know that the diagnosing in the psychiatric world is all that sophisticated. My son's thoughts and speech were all over the place when he went in to talk with our family practice doctor that very first time. He was just all over the place in what he was talking about and he was making connections between random things that really didn't make sense if you were listening for understanding. So she was able to explain to both of us that he seemed to be having a flight of ideas. Another term for that is word salad. She didn't use that term in the moment but I learned that term later. So his speech was quite manic. It wasn't that hard to figure out what was going on.
Speaker 1:Once you got past the ghosting of it all, what was the next step to try to get around that obstacle?
Speaker 2:Well, we worked with the psychiatric nurse practitioner for a while, but my son's commitment to taking his medication was limited by the undesirable side effects, but also by a symptom of illness that I didn't understand at the time but I have since learned is referred to as anosognosia, and this is a really important term to understand.
Speaker 2:So anosognosia is a neurobiological symptom of severe mental illness. Estimates are that it's present in at least half of cases of individuals with schizophrenia and something around 40% of individuals with severe bipolar disorder. So anosognosia, again, is a symptom of illness that means the person's brain is unable to perceive its own impairment. So the person knows they are not sick. It is not denial, it is the brain's inability to see that there's a problem. So a person with anosognosia will know that they are not sick and that the problems in their lives are related to external causes. So they'll blame other people, circumstances, for what seems to be blowing up their life, when in fact what's going wrong is in their own brain and their own inability to distinguish between reality and their perception of what is happening.
Speaker 1:I spoke with a lady just the other day. She brought up the same term that you just mentioned. If I remember correctly, I think it took her about three and a half years to get her son treated in such a way that there were no reoccurring issues that popped up. I believe it's been about a year now. He's been really good with his medication. What's the process to get that treatment and find it so they can take advantage of it, so ultimately it can help them. Then after a while they start coming back to maybe not exactly what they were, but better than they are at this point in time.
Speaker 2:It's a really important question. There are two doorways into the treatment system. There's a voluntary door and there's an involuntary door, and a person who lacks insight into their condition will almost never go through that voluntary door. The only way that someone might be motivated to go through the voluntary door is if they have a long history of evidence helping them connect treatment to a higher quality of life and a trust and willingness to let other people help them find treatment, because somehow they have become motivated to do it, because they think maybe they'll have a higher quality of life. That is a heavy lift. So for most families or caregivers whoever the caregiver might happen to be they've got to somehow help their loved one access treatment through the involuntary door.
Speaker 2:And every state has its own laws regarding involuntary treatment. Generally, what is required is an extreme level of illness that involves an emergency, which usually means there's a victim, because most states require evidence of harm. So that usually means a suicide attempt. So that usually means a suicide attempt. A homicide attempt or some kind of major assault is required before involuntary treatment is available.
Speaker 1:So how do we change that? It only makes sense to me that sometimes we have to use common sense, and that doesn't get used much. It's kind of like the police saying, well, we'd love to help him, but we can't because no crime has been committed yet. However, we know that that path is where it's leading to. So how do you get that involuntary help so that person doesn't create a problem, so that way he avoids the law and ultimately gets the help that he needs?
Speaker 2:Our state laws need to account for psychiatric deterioration, and there are some states that now have standards that allow for psychiatric deterioration as an entryway into involuntary services. So if a person presents so disconnected from reality that it seems evident that they will soon be at risk for harm, they can be treated involuntarily, even when they can't understand their situation, if the law allows for that psychiatric deterioration as a criteria. That is the beginning. What's happened across the country is that we no longer have treatment standards based on someone's medical needs. We have treatment standards that are based on legal criteria, and the legal criteria that require dangerousness have gotten so extreme that they require evidence of harm, which in effect means they require harm and violence instead of preventing harm and violence. But the psychiatric deterioration standards can shift that.
Speaker 1:So now, with that said, you are working for a company that is advocating for some of those changes to be made. What are some of the things that you do, if not daily, weekly or whatever the time frame may be, to work on getting some of those changes done, so it's better for everyone involved?
Speaker 2:Thanks for asking. First of all, I spend a bit of my workday talking to families across the country about their circumstances and how they're attempting to navigate the system that exists. Circumstances and how they're attempting to navigate the system that exists. So I get an earful every day from family members stuck in situations as dire as the situations that I went through as a family member myself. So I'm boots on the ground talking to families about the reality of the situation across the country. I also help to manage a community resource center on the website for Treatment Advocacy Center where we provide information to help families and individuals who are attempting to navigate the services. So, for example, we have an article on the criminal legal system and how to try to navigate that. We have an article about HIPAA confidentiality laws and a lot of misunderstandings around HIPAA laws are explained in that article.
Speaker 2:And I also support Treatment Advocacy Center's work to develop grassroots advocates across the country who are using their stories to try to influence change in the system to try to make a more sensible treatment system. For example, right now I'm working closely with a group of families in the state of Oregon who are going to rally in the upcoming legislative session to try to get Oregon lawmakers to better define dangerousness in statute. Dangerousness can make a little bit more sense if you have a psychiatric deterioration standard that defines what mental incapacity might logically lead to dangerousness, so that again we can prevent harm when somebody is really, really sick instead of waiting for harm to happen. And I can give you an example that's quite heartbreaking. So trigger alert. One of my Oregon family advocates has a son with severe schizophrenia, paranoia, delusional thinking, quite unwell, and his mother became guardian, was able to get him hospitalized but the hospital refused to medicate him against his objection, despite florid psychosis, they sent him home still extremely psychotic and he murdered his mother.
Speaker 1:Yeah, that's real tough. It's situations like that, along with other things, with people that have severe mental health, that creates this stigma that no one really wants to talk about, and I find a lot of people do not want to accept that it's actually there. It seems like it's always going to be until people start getting a better understanding about it that the whole perception they have will still be there. How do we beat that? How do we create an atmosphere where it's not something that people are afraid to talk about? Then, of course, if something does happen, we have to make sure that it doesn't get overblown, so it doesn't create a situation where nothing can get accomplished.
Speaker 2:Well, first of all, I don't think there's anything that you can do to overblow a situation of a psychotic young man who was discharged from a hospital so sick that he killed his mother. You know you can't call it stigma to tell the truth. These stories come my way all the time. They are heart-wrenching stories and we've got to get past being told that it's stigmatizing to tell the truth, service in making the general public so uncomfortable to talk about severe mental illness that the truth gets buried. So I think the way to bust through stigma is to get real about what is truly happening.
Speaker 2:And individuals with untreated and undertreated severe mental illness are more likely to be violent, and those that they are violent against are most likely to be family members and loved ones. These people are not criminals and they're not violent by nature. They are very, very sick and their brains are creating confusion in their minds. I recently met a family and the young man dabbed and killed his mother, dabbed her in the heart because he thought that was how to save her soul. Someone in psychosis is not a violent person by nature. They are completely confused because their brain is misperceiving reality and we've got to be able to talk about the truth of that and admit that we want to prevent harm instead of requiring harm as a criteria for treatment.
Speaker 1:I think what people need to know is for every bad situation out there, there is a good situation that happens that they need to hear about. If they can hear the good things along with the unfortunate bad things, like you said in here, the good things along with the unfortunate bad things, like you said, be real, with the truth of the good things that happen as well as the bad Maybe that can help build that pathway to ultimately build that bridge to show that a bad situation with a person can be overcome and turn it into good.
Speaker 2:A hundred percent and there are some really spectacular stories out there of recovery. A young man that I know who received assistant outpatient treatment in Texas. I like to think of him as what my son could have been if my son had gotten what he got. He got assisted outpatient treatment, he got the medication clozapine. He got a team of people looking out for him, keeping track of him, helping get him back on track if he started to decompensate again. My son didn't get any of that.
Speaker 1:With everything's being said here, I think and I think you'll agree that this has to be addressed on a national level. That way, there's at least a certain set of rules that they have to follow. Then, if the states decide they want to do more and make it better, that's a good thing.
Speaker 2:I couldn't agree more. I do believe that we need a national approach to severe mental illness so that states are accountable for the outcomes, because the outcomes right now are horrific in almost every state, but that information is really not being tracked.
Speaker 1:When you say tracked. Can you explain and expand on that?
Speaker 2:We don't have a national database that's going to say how many individuals with untreated severe mental illness are incarcerated. Have killed family members, live under bridges.
Speaker 1:Yeah, it seems like there's something around every corner that is preventing you from moving forward to help these people.
Speaker 2:That's right. That's right. And the treatment systems that we do have for severe mental illness I like to describe as a funnel Remember those coin funnels where you would put the penny in and the penny would spin down until it finally went down in the bottom of the funnel. I feel like that's what happened to my son Once he was spinning around that funnel. The system was just watching and waiting for him to fall down through the hole in the bottom and down through that hole. We have social security systems that don't give you a very high quality of life. We have Medicaid systems that don't give you access to the most sophisticated type of care. We have homelessness systems that might get you a shelter or a tent but rarely help you get into the kind of supportive housing that's really needed for a long-term recovery and a higher quality of life.
Speaker 1:It's kind of sad. I think people have a perception in their mind of all these people and the issues that they can have because they see it on TV or in the movies. Like I tell a lot of people that I work with here in Nashville, it's not like the movies.
Speaker 2:It's not like the movies.
Speaker 1:What would you like to tell people to give them a realistic view of what they need to know if they were ever to encounter something like this that we're talking about?
Speaker 2:You mean what I would tell people if someone in their family became ill, or just the general population?
Speaker 1:no-transcript. The main purpose of this podcast is for people that might not know anything about this, then hopefully they can get a little understanding and information about what we're talking about.
Speaker 2:Well, let me tell you an example that a coworker and I just wrote an op-ed that we hope gets picked up somewhere. If someone that you love shows signs and symptoms of a stroke, you anticipate a certain response from the medical system. Right, you take them to the ED, Even if the person says I'm fine, leave me alone, I just have a headache, I just want to take a nap. You see their face drooping, they're slurring their speech, you know better. And you take them to the emergency department and there is a team that rallies. They have a code on the loudspeaker. You get long-term engagement with recovery support. The family's engaged right.
Speaker 2:If you have a loved one who has a psychotic break, like I described when my son came home from college, deeply concerned about demons ripping around the house, locking off rooms, exercising demons from our walls If you have someone who suddenly falls into psychosis like that, you will not get the same kind of response that you would expect if someone that you love was having a heart attack or a stroke. You will get a system that says have they threatened to kill themselves? Have they threatened to kill you? Do they have any weapons? Is anyone harmed? Do they want to go to the hospital. If not, it is their civil right to say no. They're having a neurodivergent experience, so we'll just let them be. If you've never been witness to a psychotic break, it is nothing like you can imagine and you will not get any of the help that you would expect.
Speaker 1:This is definitely a subject where people need to get a better understanding to make things a lot better for everyone.
Speaker 2:So ongoing exposure to untreated psychosis worsens the condition and makes it less likely that the person will recover in the long term, which is what happened to my son, and I watched the brain damage occur over four years. His chances for recovery were much better at the beginning, but we kept being told he had to be much sicker before he would be eligible for services.
Speaker 1:Yeah, and then when he does get sicker, it's at the end where he could have been helped.
Speaker 2:Correct, that's correct. And when he was his sickest, he was incarcerated, not hospitalized.
Speaker 1:Right, right. We definitely have to get more knowledge and more help out there to better help those people that need it.
Speaker 2:The other area that is really lacking in appropriate understanding is the area of family engagement. There's this misunderstanding in the system that families have given up, that families don't care or that families actually caused these illness conditions, and that is incorrect. And I know that because I talk to families all across the country who are doing everything in their power to save their loved ones. I talk to family members who have been almost murdered by their loved ones in psychosis, but they are still doing everything they can to save the lives of those loved ones. Family engagement is really poor across the system. Hipaa is badly misunderstood across the system. Families are in it for the long term and they need to be engaged as allies in the care of their loved ones, but they also need to be equipped with the right information and the right support so that they can continue to do what they want to do, but they become unable to do because the system is so lacking.
Speaker 2:Our son was living in our home. Our health insurance, we were paying for everything, but the system kept telling us he wasn't sick enough for anything, so we weren't getting any of the supports or information we needed to continue to support him. They told us that he needed to be homeless. He needed to have a track record of incarcerations, crises, suicide attempts. He had to check all the trauma boxes before he would be eligible for the things at the bottom of that funnel that might help. But yeah, by then he was so unwell that his illness really wasn't going to respond as well to treatment. He still could have survived if the services had been more robust, but they weren't.
Speaker 1:Yeah, and that's very sad. Well, this has been great to have you on. Lots of great information, great conversation. I truly appreciate you taking the time to come on my podcast.
Speaker 2:You're very welcome. I really appreciate the opportunity to speak with you. You've got potential to make some real impact. I really appreciate you inviting me on to talk about severe mental illness.
Speaker 1:It's been my pleasure. Thanks again. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to tonymantorcom Contact then they can give us their information so one day they may be a guest on our show. One more thing we ask tell everyone everywhere about why Not Me, the world, the conversations we're having and the inspiration our guests give to everyone everywhere that you are not alone in this world. You.