
Tony Mantor: Why Not Me the World
Autism is a complex neurodevelopmental condition that affects millions of people worldwide.
It is characterized by difficulties in social interaction, communication, and repetitive behaviors.
Although autism is becoming more widely recognized, there is still a lack of understanding and awareness surrounding the condition.
As a result, many individuals and families affected by autism struggle to find the support and resources they need.
Why Not Me The World podcast aims to bridge that gap by providing valuable information and insights into autism, fostering empathy and understanding, and promoting acceptance and inclusion.
Nashville based Music Producer Tony Mantor explores the remarkable impact his guests make by empowering their voices in spreading awareness about autism and helping break down the barriers of understanding.
Join Mantor and his guests as they delve into the world of autism and mental health to explore topics such as diagnosis, treatment, research, and personal stories.
Together, we can create a more informed and compassionate society for individuals with autism.
Tony Mantor: Why Not Me the World
Stephanie Beilin: Mother's Journey Through Mental Illness and Incarceration
A mother and clinical social worker shares her heartbreaking journey navigating the legal system after her high-achieving son developed serious mental illness, revealing how our justice system criminalizes rather than treats mental health conditions.
• Licensed independent clinical social worker with 40+ years experience working with vulnerable populations
• Her academically successful son began experiencing internal racing thoughts and anxiety despite outward success
• Despite parents' professional backgrounds (mother a social worker, father a psychologist), they faced enormous challenges getting appropriate care
• Son discontinued medication at 29, leading to psychotic episodes and repeated negative police encounters
• Law enforcement and legal system demonstrated lack of training and empathy in handling mental health crises
• Massachusetts lacks assisted outpatient treatment programs that could have prevented criminalization
• 70-80% of incarcerated individuals suffer from serious mental illness
• Anosognosia: neurological condition where individuals lose ability to self-reflect on their behaviors
• Advocate working with National Shattering Silence Coalition to change legislation and improve mental health services
• Need for systemic change in how police, courts, and society respond to mental health conditions
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.
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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 Maitour, 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.
Speaker 1:Welcome to why Not Me? The World Humanity Over Handcuffs the Silent Crisis special event. Joining us today is Stephanie Bylin, a licensed independent clinical social worker with over 40 years of experience, including 32 years in a public high school, where she coordinated services for students with social, emotional and neurological challenges, creating collaborative teams to support teachers and staff in meeting the needs of this integrated, vulnerable population. She's also here to share valuable information about her son, who came to her with racing thoughts and having difficulty processing information internally. This experience led to her navigating the legal system and now she shares her insights on what happened and her efforts to support her son. It's a pleasure to have her here. Thanks for coming on.
Speaker 2:Thank you so much.
Speaker 1:The pleasure is all mine If you would give us a little background on yourself and how you became an advocate for mental health.
Speaker 2:Well, on a professional level it's kind of interesting. I'm a licensed independent clinical social worker with close to 45 years experience. For 32 years I worked in a public high school kind of coordinated services for those individuals who had, you know, social, emotional challenges, including neurological challenges, and kind of set up teams to support teachers and support staff to take care of these vulnerable population. That is very much integrated into the public school. It's kind of interesting that, given my background and then prior to that I was a medical social worker, actually at Beverly Hospital, which is an acute care medical surgical hospital, so that's my professional background and right now I'm still practicing.
Speaker 2:I provide clinical services to individuals who are dealing with depression, anxiety, life transition, stress in the family, kind of all of the above. Given all of that, 16 years ago almost 17 years ago my son came to my husband and I describing some symptoms of having racing thoughts and some anxiety. He was having a lot of difficulty managing inwardly not outwardly inwardly some of his experiences in life where, objectively, no one really saw it. He was, you know, in the top 5% of his class, highly regarded football player, was a Rotary International student, was super successful, but that did not translate to what was going on with him internally and he was having a lot of hardship managing some of the racing thoughts and some of the sort of intrusive thinking that was going on inside of him.
Speaker 1:So, with all this happening, what were your next steps?
Speaker 2:To let you know my husband. He's a clinical psychologist so we felt like we were pretty well equipped and had access to good quality services in the Boston area. Took him right in to see a health professional. Given the genetic predisposition on my husband's side of the family with bipolar disorder, the psychiatrist felt it was indicated to, you know, get him on a variety of medication to manage some of the racing thoughts and some of the issues of the anxiety and depression.
Speaker 1:With all those challenges, what were the next steps you used and how did it progress?
Speaker 2:You know, when it did take some time to manage the medication. I mean, that is never easy. We felt like he was doing great. He was highly functional, had friends, was really very, very successful in many different areas. Being from New England, he went to one of the NESCAC goals, played football for four years, traveled the world studying international studies, worked as a teacher, coach, mentor. Then he decided to go to social work school and at Ivy League school, did really really well.
Speaker 2:And even though he was doing really well with all of these areas, one thing that I may have overlooked is how he felt about having a diagnosis and how he felt about always having to manage his medication and some of the side effects around that medication. So what he did? He took himself off medication and when he was 29 years old, kind of like at the peak of career not the peak but certainly an entry point of having of what could have been a very successful career path Took himself off medication, had his first psychotic episode, which was frightening for him, frightening for my husband and I. He was not living in the area. We drove right down, we managed crisis teams, doctors, police intervention, all of the above to get him hospitalized, because we were that fearful for his safety.
Speaker 1:I can only imagine how stressful that situation was. So what happened?
Speaker 2:from that point moving forward, so that was the beginning of being in and out of hospitals, periods of being super compliant and having a lot of success around that and living independently and managing his life. But whenever he started playing with his medications, eventually coming off the medications, it has wreaked tremendous havoc and the sad part is that you know a little bit about the town we live in. There's very high standard for how people should function and how they should behave, kind of like that very staunch New England expectation. Like everyone has to function at a thousand percent, a thousand percent of the time. And he had to come back home to get some support and regroup and all of that. And he did well for a while, as I said, moved out, had his own apartment, but eventually had to come back in because off medication.
Speaker 2:There were just so many encounters with various police departments that did not display sensitive behavior and mindful behavior around someone with a neurobiological medical condition. They really weren't interested in hearing that. All they wanted was the behavior to stop. That was the entry point of police intervention, which did not go well and it just led to one arrest after the other and currently my son is at a state hospital right now. He's competent, he's on medication. He's doing great, but at the same time now he has to reconcile some of these court issues, and the sad part is that in Massachusetts we're one of two states that does not have an outpatient assisted treatment program. I don't know whether you're familiar with that. You probably are.
Speaker 1:Yes, I'm aware of it. It's unfortunate it wasn't available for you.
Speaker 2:If we did have that in our state, he would have gone down a path of treatment versus the criminal route and the incarceration, which doesn't do anyone good who has a clear-cut, diagnosable medical condition. In fact, all it really does is deny access for individuals who are in that situation by not having the appropriate treatment and the appropriate medication.
Speaker 1:Law enforcement and legal professionals are focused on doing their jobs but sometimes lack the training to handle these situations effectively. Police in particular are forced to make decisions, sometimes in seconds, which can lead to misunderstandings or escalation. How was the interaction with the police during this whole process with your son?
Speaker 2:It did not go well. I think that if the police were better trained in the areas of mental health crises, if there had been a clinician connected to the police department which did not happen at all in the case of my son I think the outcome would have been very, very different. I know that some police departments have greater knowledge of the impact of mental illness, living in the sort of town that we do. There was just zero tolerance for that, despite the fact that my husband and I did our very, very best to try to educate them, that my husband and I did our very, very best to try to educate them. Arresting someone who is in an acute medical crisis is not the solution. It only induces more illness. It induces more paranoia, you know, psychotic thinking. It's just a very unhealthy environment.
Speaker 1:Navigating the legal system after a police encounter can be really tough, especially when judges, district attorneys, ADAs aren't well-versed in mental illness. Then you can add that some defense attorneys are not well-versed either. This gap often complicates things and makes it rougher on people such as your son. Did you run into any situations like this with him?
Speaker 2:We did. I think things could have been handled much, much differently. When my son was in court, it was clear that he was not mentally stable. It was clear cut and rather than connect with the medical community, the immediate response within the court environment was to arrest him, send him off to jail, and I feel like the attorneys could have advocated in a much different way.
Speaker 2:I know that some have become more well-versed in areas of mental health. Because so much of criminal behavior, shall we say mental health? Because so much of criminal behavior, shall we say? I'm just talking about things like disturbing the peace and misdemeanors just can escalate to a point if someone is in a medical crisis. So I personally feel very disappointed in law enforcement in the legal system. With all due respect, I'm sure it's hard to expect judges, if you will, to be up on mental illness, although I think it's something that people really need more training about, more sensitivity, about To say to someone I don't want you ever back in my court again. I mean that's like telling a diabetic the physician never wants to see them in the ER again if they go off their insulin. That's a really, really important point. It's not bad behavior, it's not a personality disorder. It's a medical condition that certainly has behavioral offshoots, similar to any neuroatypical condition.
Speaker 1:I've been talking with people around the country Recently. I learned about forensic therapists. Up until then I really didn't know what they did. Are there any in your area who can advocate for a defendant, such as your son or whoever it may be at the time to explain to the DA and the judicial system what's going on in their mind and why they're in their current situation?
Speaker 2:what's going on in their mind and why they're in their current situation. That's an excellent question. Basically, the forensic psychologists or clinicians get involved when someone comes to the court and is like overtly psychotic or overtly, you know, disoriented, perhaps doesn't know where they were born or what day it is or who the current president is. I mean, I think that those are the more obvious situations for sure and I think that court clinicians can intervene and are able to kind of deal with the obvious symptomatology. I think when someone goes in and out of you know kind of like a pre-psychotic, pre-mantic state, they can seem pretty articulate.
Speaker 2:I mean, for someone who is intelligent, good looking, is well educated, I think immediately there's bias in the criminal system and I've seen it play out time and time again. It's as if someone with that kind of a background should know better. They should know better not to say inappropriate things to strangers or they should know better to know how to manage their internal sort of like self-regulation. So I think there's the obvious cases for sure and I think individuals in those situations probably tend to do better. Sure, and I think individuals in those situations probably tend to do better what I've observed in the court, that there is bias against people who are well-educated. You know again, should know better. You know there's a lot of judgment around that and I think that that can also work against those individuals.
Speaker 1:In the 70s, autism and other mental health conditions were poorly misunderstood. In the 70s, autism and other mental health conditions were poorly misunderstood, often leading to people being dismissed as weird or quirky without a proper diagnosis. Now, fast forward, 50 years later, we should expect judges, das, adas, defense attorneys to recognize and not have that they should know better attitude. Because they should know better attitude, because they should know better that a person's actions can be shaped by their mental capacity and may not be able to manage a situation that they find themselves in.
Speaker 2:I could not agree with you more and I am baffled why, in the state that I live in that has access to so many world-renowned healthcare organizations, how that doesn't translate to other institutions like police departments and the court and prisons themselves, because, as we know I think the latest statistics 70 to 80% of individuals who are incarcerated suffer from serious mental illness. So I think there's a huge gap in the system and that's what many of us are advocating for. We're advocating for change in legislature Number one. We're working tirelessly to get, you know, massachusetts passed as a state that will support assisted outpatient treatment, and we're also working tirelessly to try to get a state hospital out of the hands of the Department of Correction and into the Department of Mental Health, which it absolutely needs to be.
Speaker 1:Now you're working with several organizations to bring more awareness and get legislative change. Is that correct?
Speaker 2:Yes, I'm connected to the National Shattering Silence Coalition and I'm also connected to other advocacy groups that are working closely and collaborating with medical students and a whole coalition to try to support these two change of policies.
Speaker 1:I've been broadcasting my podcast for almost two years now. I had one episode about a year ago that covered training for police officers that would come in contact with those that would be autistic. Even then, I really didn't think there was a huge problem. Now I'm doing the Humanity Over Handcuffs the Silent Crisis special event and I'm finding there is a huge issue, as I have had people sharing stories of their loved ones sons, daughters, spouses being incarcerated due to a lack of knowledge or misunderstandings. After hearing these stories, I believe this initiative needs to be scaled up significantly, not just training judges, police DA's, a DA defense attorneys, but the public as well. If I wasn't aware of this problem, considering I'm talking with people in the autistic and mental health communities, the general public is likely even less informed. We need to do everything we can to share these stories to foster greater empathy and move beyond the black and white thinking.
Speaker 2:I could not agree with you more. I mean you talked about sort of like how people are responding as how they responded in the 60s and 70s, and I can certainly relate to that mindset for sure. I feel honored to be able to reflect on that quite truthfully. We need to do better, we absolutely need to do better. Perhaps people that live in more urban environments the police have a higher tolerance for some of the behaviors.
Speaker 2:From what I have observed in these smaller communities there's a lot of intolerance. You know what's happening to this generation who are being hit pretty hard with these neurological conditions. And just by the way, tony, so you'll know that from what the research has shown, with each generation where there's a pre-existing genetic situation like bipolar or schizoaffective, it gets worse through the generations. It doesn't improve because the societal norms have much greater expectations and there's so much more stress and anxiety of just being able to live one's life in such a fast-paced culture. So this is something that is not going away. I mean more children are being diagnosed at younger ages. Having worked in the school system for 32 years and you know, having a lot of close connections with community based treatment centers and hospitals, we can do much better and I think even the Department of Mental Health needs to step up and really call serious mental illness what it is. It's not like situational anxiety. It's not something that you can like breathe through. It's a neurological condition that needs sort of a medical model, interdisciplinary approach.
Speaker 1:Yeah, I think that people that are in the general population if they don't have anyone that's autistic or anyone that has any mental health issues, such as serious mental illness, they just don't understand it. I was one of those. Before I started this podcast, I knew nothing about any of this. How I've learned is learning on the job, so to speak. I've learned by listening and hearing the stories. So if I didn't know that this was a problem, the general public definitely does not understand what's going on. They think that autism can be cured, serious mental illness can be cured Take a pill and everything's okay, and sometimes that's just not the case. So how do we make this better? How do we get people to understand so we can have more empathy for those that are going through this?
Speaker 2:There needs to be a lot more education around mental illness and autism. For sure. You bring up a really good point about treatment issues, one of the key components. There's a group of medical students and a psychiatrist who are trying to get this particular cluster of symptoms into the new like diagnostic statistical manual the one that's, I think, in the fifth revision or something.
Speaker 2:It's a term called anosognosia, and anosognosia is a neurological condition where one actually loses the ability to kind of like self-reflect on one's individual behaviors. So, you know, police may come over to someone and say you know, like who do you think you are doing this, that and the other thing? And the individual may have no genuine understanding of how a problematic behavior is perceived by others, because that individual can't link in to themselves and see themselves as an inner resource. It's like, hey, what are you doing? You know you got to reel yourself in. You better change this behavior. That is a neurological condition that people really don't understand. I'm a social worker, you know clinical social worker. I've had a wonderful career for so many years. This is something that I've had to become familiar with myself. I think that even clinical training has to focus more on those individuals with serious mental illness and autism, you know, and not more like the classic anxiety and depression and situational stress sort of thing. We need to be better trained and educate others around this.
Speaker 1:The slogan for my podcast is awareness, acceptance and understanding.
Speaker 2:I love that.
Speaker 1:Yeah, I tell people you can be aware of something, you can accept it because you're aware of it, but until you understand it, you absolutely know nothing about it or what that person is going through. I think a big part of why many diagnoses are coming out now is because the medical association is learning more, because they're getting more clinical. They're doing that deep dive. Years ago they didn't have that knowledge and they just put somebody as quirky or just strange. I know there are a lot of theories out there for many different things. I just think that we're becoming more defined and we're getting a better, greater understanding of people and the issues that I wholeheartedly agree with you, for sure I think that children are being diagnosed at record-breaking numbers with autism.
Speaker 2:When I was growing up in the 50s, 60s and 70s, I maybe knew one person that struggled with communication skills. Now having autism and someone being nonverbal is not unusual at all and families having to learn sign language to communicate with their loved one. And also, I do want to say, medication is not easy. As much as psychiatry is a science and neurobiology is a science, finding the right balance of medication it has, you know, from what I have observed in my own family family, has been less than ideal. There are side effects, there's weight gains, sort of like mental fogginess, there's a whole host of symptoms connected with psychotropic medication.
Speaker 2:I think that from what I've observed, you know, once someone accepts their condition which you know, in my son's case, has taken close to nine years, which you know, in my son's case, has taken close to nine years, nine years of a lot of up and down, you know, during a very pivotal time of his life. He seems to really get that now and look back and say what was I thinking Like? What was I thinking? What motivated me to get into these confrontations? He never had a discipline report in high school, never had an incident incident free, and all of a sudden he had to integrate, like you know who was this person, and that's a pretty scary thing. I mean, that's hard to understand within oneself. It just doesn't happen by. You get on medication because the risk of getting off medication is so high. It's almost as if in a sad way sometimes individuals have to go through all this pain and difficulty to accept their health condition.
Speaker 1:I read, autism was first discovered in 1910. At that point in time they didn't know what it was, so they call it a mental issue. Then they treated it with electrotherapy and put people through just tremendous pain. And here we are, a hundred plus years later. They've separated everything, when I truly believe that it needs to be more inclusive, so that way you can help everyone.
Speaker 2:That's an excellent point. Thank you for making it.
Speaker 1:Yeah, that's just my opinion. It's an outsider just looking at things differently. So what would you like to tell the listeners that you think is important? They know these illnesses are not going away.
Speaker 2:They are getting more enhanced through the generations. Given the environmental and sort of societal norm pressure connected with it, I think it's really important that our leaders get involved, our leaders in each individual state to recognize that their own residents are struggling. And you know, there needs to be programmatic changes and there needs to be policy changes within these states to give people the treatment that they are entitled to in a humane, knowledgeable way, where dialogue is encouraged between patient and care providers so that individuals can share you know what their needs are too, without it being sort of like a hands down approach to you know healthcare.
Speaker 1:I definitely agree. Well, this has been great Great conversation, great information. I really appreciate you taking the time to come on.
Speaker 2:Thank you. It's a hard thing to do, you know. I have to say, I never thought that I would be in this situation and actually I discussed it with my son because he is very intelligent, you know. His competency is restored, he's medication compliant and I told him about this and he thinks it's great. He thinks that more people has to know. He feels like maybe at some point he will have a voice to be able to express. You know, which is even more important, but he did want to make sure that others are. You know that there is a public awareness about the role of law enforcement in the individual's communities, because that can be like a driving situation to what path someone gets treatment versus punishment.
Speaker 1:Yes, I think he is 100% correct. Well, again, thanks for coming on.
Speaker 2:Well, thank you. I hope that this has been helpful.
Speaker 1:It's been great. 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 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.