Tony Mantor: Why Not Me the World

Ruth Johnston: Autism and Schizophrenia: A Mother's Fight for Change

• Tony Mantor

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Ruth Johnston shares her harrowing journey as the mother of an autistic son who developed schizophrenia, and how this experience drove her to advocate for Assisted Outpatient Treatment (AOT) in Allegheny County, Pennsylvania following a family tragedy.

• Ruth's son was diagnosed with autism as a teenager, after she had already been homeschooling him for years
• Around age 13, he began showing signs of developing schizophrenia, though it took a decade to recognize the condition
• Current laws prevented intervention despite clear evidence of his deteriorating mental state
• Expert testimony revealed 5-34% of autistic individuals may develop schizophrenia as adults
• Anosognosia (inability to recognize one's own mental illness) prevents many from seeking help voluntarily
• AOT programs allow civil courts to mandate treatment before dangerous situations occur
• The "black robe effect" of a judge's order can help individuals comply with treatment
• Modern medications like Abilify can dramatically improve quality of life without severe side effects
• Patient advocacy groups often oppose AOT but don't represent those with severe schizophrenia
• Ruth founded AOT4AlleghenyCounty.com to advocate for these needed programs

To learn more about Ruth Johnston's advocacy efforts or to get involved, visit AOT4AlleghenyCounty.com or email AOT4AlleghenyCounty@gmail.com.


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intro/outro music bed written by T. Wild
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Speaker 1:

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 Ruth Johnston. She will share her personal experience with her autistic son, who subsequently developed schizophrenia, and discuss how this led to her establishing AOT for Allegheny County in Pennsylvania. I'm delighted to have her join us, bringing a wealth of knowledge on this topic. Thanks for coming on. Thank you, it's my pleasure. Can you tell us about your autistic son?

Speaker 2:

My son is 38 now, so he's a little older. Nobody was identifying autistic unless they were counter-autism back then, and so he wasn't identified until he was a teenager and never had services and things like that. I never had the experience of being the parent in the IEP, meeting and working with it. I homeschooled him and we just dealt with the bumps. I love him dearly and it was on the one side it was great delight and on the other side sheer terror and misery because he was not easy and when he was, when he was 13, we started to see the onset of that's something I should talk about what it looked like for him to start to get schizophrenia, because it look over. It took at least 10 years to know that's what it was. That's important. I look at the parents who have autistic kids and I almost have a bad attitude because there's an overwhelming sense of we're going to take this school to court, we're going to make sure everything is perfect, you're going to do all of these things and I'm thinking when they turn 18 and some of them get schizophrenia, you're not going to know what hit you because the legal system is not like that. It's not at all like that and basically what I'm advocating for in my county is that now our state law permits us to set up an assisted outpatient treatment program and what that does is it permits treatment to be civil court mandated based on evidence. That's not just danger, pennsylvania. For any other kind of mandated treatment they have to meet a danger standard.

Speaker 2:

You tell someone with an autistic kid that they've just shepherded through school. They think everything's going better. Levi was starting college and he suddenly couldn't concentrate. He wasn't interested. And eventually he's in the legal system and you're told you're literally told, mrs Mother, there's nothing we can do. You have to wait for something to happen and hope it's not very bad. And in our case, when something happened it was that he killed my mother while she was eating breakfast. That's pretty bad. Meanwhile you have reams of evidence that things are bad. None of it matters.

Speaker 1:

Yeah, that's pretty sad to hear you say you're working for change in your county Now does that include involuntary help as well?

Speaker 2:

That's exactly what it is. It's instead of waiting for them to get dangerous and fall into the criminal system. Instead, you have a process that you could go through a civil court and in a sense, it's mandating them to have treatment. In another sense, we can look at it as it's mandating the county not to just conveniently let them fall through the cracks.

Speaker 1:

Now you have to go to the court system in order to do this. Is that correct?

Speaker 2:

Yeah, it's a civil, probably a probate court judge that's set up to do this.

Speaker 1:

I was talking with a lady just the other day. Her brother is living with her sister. He's having some severe emotional issues. I believe he was one of the people that you're talking about that just does not want any help. They felt he needed help. He didn't. There was nothing they could do. They could call the police. They would come out. However, the police couldn't do anything unless he was a threat to himself or a threat to others. Ultimately, they just wound up leaving. How does this get changed? They couldn't help him unless they went to court. If you go to court sometimes it takes a long time Then because of it, the issue could develop into something much, much more harmful.

Speaker 2:

That's right. So there are two pieces to what you asked. So one of the pieces is how responsive would the court system be? Would it act quickly? And I think that depends on the state and county, and right now my county has nothing. So there's nothing at all and even if it takes three months, I guarantee you'll still want that help in three months. I think usually they try to make it more responsive. The other thing is what evidence are they looking at?

Speaker 2:

In Pennsylvania there's a very strong leaning on the danger standard. You've got to be able to prove that they were in clear and present danger, either within 30 days or absolutely. You can predict it within the next 30 days and otherwise you got nothing. Whereas if you have somebody, especially an autistic kid and they've always been a little bit weird I don't mean that in a bad way, my son was delightfully weird, I loved his mind and talking to him they just become a little stranger and everybody says, oh, it's just autism, oh it's teenage years, oh it's the transition years.

Speaker 2:

By the time you realize that it's something else and it's a brain disease, by that time you're dealing with somebody who's sunk in pretty deep. You have all kinds of evidence, like they claim that the food is poisoned. Levi would lose his car in the parking lot and he'd call the police to report it stolen and they would come and help him find it. We had lots of things written where he was helping the angelic army to defeat Satan. He had war plans. He had diagrams. There was all this evidence that he had a severe psychotic illness, but none of it counted unless it was clear and present danger to self or others. Basically, when you're in a state or a county, you've got nothing you can do, and so a system that would allow you to submit that as evidence basically assisted outpatient treatment in addition to moving it into civil court. They accept other evidence, and so suddenly you have a place where you can go with this.

Speaker 1:

That makes complete sense. Your son was first diagnosed autistic, correct?

Speaker 2:

Yes.

Speaker 1:

Then, as he got older, his psychosis started developing over a period of time.

Speaker 2:

That's right. So when he was 13, he suddenly lost the ability to do math. He'd never been an Asperger's kid that was good at math. That was not his set of gifts. He was doing very advanced eighth grade math in eighth grade and all of a sudden he just lost the ability. He couldn't do anything. He started spending a lot of time just staring at the wall running through the woods. He didn't know what was wrong, and so that just continued. And then he'd get a little better and then it would get worse. When it really got bad, I'd say when he was 23 or so it was clear. And then he just went off and lived with a non-custodial parent. By the time he came back he was 26 and we were in crisis.

Speaker 1:

So was that crisis deemed anosognosia?

Speaker 2:

Yes.

Speaker 1:

Can you expand on what that is to the listeners for us?

Speaker 2:

Okay, let me explain. Anosognosia is just a Greek word. That means not knowing your own mind. It's a description of a brain defect that you get. It crops up in other things too.

Speaker 2:

Some people who have a stroke, especially if it's on the right side, it may take them a couple of days or a week to understand that they're paralyzed. And their neurologist will say to them try to move your hand. And they say I just don't feel like it. It's paralyzed. No, it's not, and so that's anosognosia. Or you have anorexic girls who really believe they're fat and cannot tell they have the problem. That's anosognosia and basically severe bipolar disorder and schizophrenia and schizoaffective. These things can do that too. The part of the brain that should be able to tell that you're talking slowly, that you're not making sense, that you're lost, the part of the brain that can tell those things is damaged and they cannot tell. Levi believed that he had a Portuguese accent, which he didn't. At times he couldn't understand our speech. I would explain that to him and he'd just say I think you just weren't making sense. So he'd say you were going through something. No, I wasn't. That's anosognosia.

Speaker 1:

I've heard from several different people this can take a long time before it develops into something so that you know that there's a serious problem.

Speaker 2:

That's right.

Speaker 1:

So it could take three, four, five, six years before it actually shows itself as a problem. That's right. If it takes that long to develop, how can you figure it out so you can handle it better and hopefully nothing bad happens?

Speaker 2:

You can't. That's the problem. You can't. That's the problem. Essentially, back in the 60s our legal system changed the way we handled mental illness to take away most involuntary treatment because, especially in the 60s, it was being seen as a civil rights issue, and so everything was shifted so that the people have to want the treatment.

Speaker 2:

If you have anosognosia, you can't, and so the only time there's anything you can do is if your state and county have changed the law and set up a program so that you can get an assisted outpatient treatment order where you can give them the evidence, basically evidence that they won't be able to live safely in life, like losing your car, getting lost, thinking your food is poisoned. These are all factors that are not predicting in a good way and that gets used. If you don't have that, then literally you can take them to an outpatient thing and they can't make them take medicine either. They can convince them. Levi said you guys are just persecuting me for my religious beliefs. And everybody told us again wait for quote unquote something to happen and hope. It's not very bad, it's maddening, it's wrong.

Speaker 1:

Absolutely. You've got such a wide spectrum. To use the autism analogy, you can have someone having a psychotic event, and it could be a mild one compared to someone having a very severe event happening, where they could be seeing things such as you described. They do bad things because they think they're actually helping the person that they're hurting.

Speaker 2:

That's right. Over time, and so with Levi again, because he was not typical, ok, you can get a lot of schizophrenia stories that sound like this my son was a freshman at Yale and he was on the football team and then he started to get weird. Ok, great, you know what? My son wasn't? My son was always struggling and it was always hard, and so when he started to have more problems, we couldn't tell. So by the time we were sure my son wasn't. My son was always struggling and it was always hard, and so when he started to have more problems, we couldn't tell. So by the time we were sure you're right, it's a genuine damage. Gizephrinia is more like Alzheimer's than it is like bipolar disorder, and so the time you see this getting worse, yeah, Sure, Now you're trying to get change in your county.

Speaker 2:

What kind of steps are you taking to do that? So first of all, we had to get legislative change in the state. I did a little bit when I could back then, just sharing the story. Most of that was carried out by treatment advocacy center, having a negotiator go in and start working with the legislator and the counties and the people who are against it, and worked out a bill and in 2018, it was signed into law. But what the bill did is it modified our Mental Health Procedures Act to permit a program but specifically, every county on January 1st can get a waiver, which essentially means until somebody creates a program specifically for this and opts in the law is not in effect anywhere. So basically, it just kicked the can down the road to the counties. But that's okay because you can work with a county State's really bigger than I can do.

Speaker 2:

I've talked to the county health department, told my story. That didn't really get anywhere because they just they don't believe that my son would have obeyed a civil order. I think he would have. He was a very law-abiding guy. He liked cops. He didn't want to be in trouble.

Speaker 1:

That's one thing autistic people are very well known for, and that is they are very structured.

Speaker 2:

Yeah, I can't say, I wouldn't describe him as structured, but yeah, he didn't want to be viewed as bad and he didn't want to hurt anybody. He would say I don't want to hurt anybody, so I think he would have obeyed a civil court. They call it the black robe effect. Put someone in front of a judge and the judge says, son, you're going to be working with this team, and they go okay, I think it would have worked. But when I talked to the county, apparently they just dismissed it. They just didn't believe.

Speaker 2:

So I've gone and I've tried to talk to other people. I've talked to some of the judges. I've sent letters to all of the judges, the police chiefs. I'm trying to create videos with interviews that I think would be interesting to them and then promoting them, not to the general public but specifically to anybody I can find. That's in that layer of people that work in the county and run into untreated mental illness, ambulance doctors, nurses, social workers, police, jail judges, lawyers. So I'm trying to get a conversation going among them and help them to understand, because none of them had even heard of it. When I explain to them what AOT is, they say why don't we have that? I say I don't know, ask the county. The step I'm taking is, having talked to the county directly, talked to assistant director at the county. That went nowhere. So now I'm trying to reach these others, have a meeting with judges and explain it to them.

Speaker 2:

I did an interview with some social workers in police departments and they were very enthusiastic. The director of the biggest outpatient psychosis clinic, after getting some of my mailings, called me and said tell me what you're doing and how can I help, because we want this, everyone wants to have this program, but the county for some reason doesn't want to make the change. I'm just trying to figure out how to get through that. I really wish that. I just know that in my county there are going to be some autism lobbying parents groups and I wish I could get through to them that this is for them.

Speaker 2:

Let's say you have an autistic kid in fifth grade and it's 2013, and you hear my story on the news. You don't think to yourself this is a kid like my son. You think some crazy person. I want to read you something, if I can, from the transcript from his sentencing. We had some autism experts testify. We were asking the judge to give him a very short sentence so that he could go into some kind of hospital or program care, and the judge did not. The one expert talking about it was Nancy Minshew at University of Pennsylvania Medical Center.

Speaker 1:

That's very interesting that she contributed. What were some of the findings that she talked about?

Speaker 2:

She noted that he had been diagnosed in her program and then went on to say that she had done a literature search. She found studies showing between 5% of autistic kids growing up to have paranoid schizophrenia and 34% on the upper end. She said that's a broad range and there just hadn't been enough studies with adults. We need more time. But just to go for maybe 20%. If one in five of the autistic kids that are in school, their parents have no idea that this could be coming to hit them, there's nothing that we can do about the grief for that. What we can do is set it up so that when they start to see a problem they can petition the court to get extra help. Because the problem is, unless their kid is severely autistic and went straight at age 18 from an IEP to a guardianship, maybe they're going to be okay. But the kids who are more high functioning, the ones you thought were going to go to community college, it's those ones. They're not under a guardianship.

Speaker 2:

The way schizophrenia develops it's like it's on a timer and it develops between, say, age 13 and age, say, 26. Those are the years and you've lost control. I really think that this is what happened with, say Adam Lanza. I think that's what was going on. They knew he was autistic, they knew he had Asperger's. But I think something else was creeping in and I read an interview with his dad where his dad said he thought that too. And once they're 18, you lose your power to force them. And then you try to persuade them. We all know what it's like arguing with a stubborn, autistic kid who thinks you're wrong.

Speaker 1:

Yeah right. The interesting part of all this is I have been doing this podcast about a year and a half now. I've heard autism, adhd, autism, bipolar. I've heard so many different autism co-occurrences that did not surprise me. This is the first time I've heard of autism developing into schizophrenia.

Speaker 2:

I know, I know.

Speaker 1:

So now to hear autism could develop into that. Between five to 35%, that's a huge number.

Speaker 2:

Yes, I know. So he was sentenced in 2017. It took a long time for him to get sentenced, from 2013 to 17, because we had a lot of lawyer problems that weren't his fault. Basically, it was in sentencing that I heard this testimony and we were all shocked. And then the second thing from this testimony, the judge when she sentenced this wasn't the testimony, but from the transcript.

Speaker 2:

When the judge got to the end, she heard our experts who were all saying I met with this man. He's autistic. He just doesn't know how to get through life. He could be very smart in some ways, but he's not going to do well in prison. Please don't put him there With every single one. She said to them at the end just answer me one question Is there a program that would keep him on medication? And they said no. In other words, she was saying to them does our county and state have assisted outpatient treatment? And of course it didn't.

Speaker 2:

And so when she sentenced, she said given the facts of the case, everybody knew when he killed his grandmother, it was nothing but psychosis. He believed that her spirit was gone and a demon was inhabiting her body and that she was poisoning our food. Everybody got that. She said knowing the facts of the case, I could give you as little as five years in prison. But I'm not going to do that because you need to be in treatment and you've resisted treatment in the past and there is no program to keep you in treatment. I'm going to sentence you in the standard range. And she said 10 to 20 years. Bang degree. Oh, did you earn a college degree? Did you do training programs? Did you do group things? They're not going to do those things.

Speaker 1:

And plus, as much as I hate to say this, autism and schizophrenia have a tremendous amount of stigma that goes along with it. Yeah, and again, as much as I hate to say it, schizophrenia is probably even more misunderstood than autism. Right, when people think about schizophrenia, they only think about the worst case scenarios.

Speaker 2:

Because that's when you hear about it, and you know why. It's because the law is often set up so that you cannot force them into treatment until you're in criminal court, and therefore it's like you're trolling them. You're just waiting and watching them get Worse and worse and worse and worse and worse. If we could treat them sooner, you wouldn't hear about those things.

Speaker 1:

I spoke with a judge the other day. I asked him what can we do to get this across to other people, other judges, DAs, ADAs, how can we make this better so we can get better treatment, or better sentences with treatment, so they don't wind up in the general population of a prison? He took about 45 seconds to a minute thinking of his response. After that he told me two words. Those two words common sense.

Speaker 2:

Okay, common sense is assisted outpatient. It's basically it's where you say we're going to stop giving all the civil rights to the disease and leaving the person imprisoned in this brain illness. That prevents them from saying I need help. The help is there. Aot uses the services that are all there. What AOT does? It's like the laws set up.

Speaker 2:

If you were in a terrible car accident, okay, and there's a couple cars and there's people being hauled out of terrible situation, the ambulances pull up and they say, with a loudspeaker ambulance over here, folks come on. That's what it's like. Some people could do that, but a number of them are, I don't know, unconscious, legs broken. Aot is the stretcher, where you go to where they are and you put them on the stretcher, even if they're not able to say yes, please, you put them on the stretcher because you can see they're unconscious and you take them in the ambulance. That's what they're not doing Again.

Speaker 2:

Back in the 60s, before there was as much known about brain illness, there was an idea that people were just manifesting the problems their mother gave them and it seemed really unfair and the idea that the medicines would make you just sit and drool and so basically legally making someone take medicine is the equivalent of incarceration, and they use the same due process things. Aot creates a due process in the civil court that can accept evidence like he's talking to angels, and so you can actually get help. Because the way it's set up now, I think it made sense to them in the 60s, but we know a lot more now and it no longer makes sense.

Speaker 1:

Well, autism was first diagnosed in the early 1900s. They described autism as a symptom of child schizophrenia.

Speaker 2:

And they called it early, they called it schizophrenia pricocs.

Speaker 1:

You would think, here we are, 2025. Since 1910, we've come a long way. Things have gotten better, Medication understanding's coming along. We're still not there. Yet you would think the justice system would work with the states, the counties, the Congress to make things better so that in the end, it's a win-win for everyone involved.

Speaker 2:

I know Listen. The problem is that there's a loud lobbying voice against this. Actually, before I tell you that, when you were talking about medicines, I just want to go back and say that the picture of somebody sitting and drooling. Let me explain. When my son, he was briefly in state hospital, then he was stuck in the jail on very cheap medicines for a long time. When he finally went into the state system, they put him back on a modern medicine, a fairly new one, Abilify. He began calling home three times a day for the short time he could talk and he said to me mom, when I'm on Abilify, I wake up in the morning I can find words, I want to do things and there's nothing to do. Why couldn't that have been done before he was in the state system? So it's not at all that the medicine's turning into a drooling monster now. It's always getting better. Okay, voices against it.

Speaker 2:

When you talk about people with mental illnesses, there's a wide range, right? There's bipolar disorders, severe and mild. There's people with, obviously, schizophrenia, people with anxiety disorders, people with personality disorders, people with depression, severe and mild, and what ends up is they all get grouped together and most of them do not need to be forced into treatment. They don't, and they know it, and many of them have had a bad experience in the hospital and some of them, when they get out, they're very disruptive people and they want to protest and complain. Essentially, there are patients lobbying groups that are very strong voice. One of their slogans is nothing about us without us. Don't make laws without consulting us. If you're going to make a law on the Rosebud Sioux Reservation, go ask their people first. That's how they're seeing it. But the problem is they're not speaking for the schizophrenics and they specifically are not speaking for my son. They usually say oh, we don't mean the lawbreakers, we're not talking about them, they can't throw him under the bus fast enough, so they'll get out there and they'll say don't do anything involuntary, it's terrible, it ruined my life, whereas the schizophrenics who did get successful, involuntary treatment, they're keeping their heads down. They don't want to stick out. Most of them are keeping their mouths shut. So there's this very loud, very aggressive lobbying group that you can hear.

Speaker 2:

I'm not very happy with them, and so I feel like what I would love to see happen is if the autism parents lobbies could begin to get their minds around the fact that realistically maybe not their child, but somebody they know who was in their kid's grade or special ed class or somebody is going to develop schizophrenia and the only question is whether their parents will be able to give them good care. Or will their parents be handcuffed by the laws and have to wait till the autistic child kills somebody gets into the criminal justice system? I would love it if they could get past the stigma of schizophrenia, and I know that's a huge ask. It's like saying your child's going to get leprosy. And I know that. I know that because when I was facing that, my child, my son Levi, was my beloved, delightful little professor.

Speaker 2:

He lectured people at the laundromat when he was three years old about how airplanes stay in the air. It's called the Bernoulli effect. He was delightful. I had to face that this was happening and I went through all of the pain of that, all of it. So I get that it's a big ask, but if the autism parents could understand that all they have to do is accept it, enough to begin lobbying for assisted outpatient treatment, because if their son or daughter does get there, they're going to want it and it's going to be too late. Join me in trying to get. There have got to be autism parents in my county that could join me.

Speaker 1:

How do people contact? You could join me?

Speaker 2:

How do people contact you? I live in Allegheny County and I set up a website, aot4, spelled out as a word F-O-R AOT4AlleghenyCounty, a-l-e-g-h-e-n-y, countycom, and I also have that as a Gmail address AOT4AlleghenyCounty at Gmail. At the website, I've got some information about assisted outpatient treatment, about our family story, about the legal problems and a contact there. I would love to have people, especially in Pennsylvania, contact me, but I'd be happy to talk with anybody. I might even be able to put them in contact with people in their state. We just need people to start to understand that this is important.

Speaker 1:

Yeah, absolutely, this has been great. I appreciate you coming on.

Speaker 2:

I was delighted when I heard of your project, so important. Thank you for talking about it.

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.