Tony Mantor: Why Not Me the World
Ruth Johnston: Autism and Schizophrenia: A Mother's Fight for Change
Thu, 24 Apr 2025
Send us a textRuth 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 programsTo learn more about Ruth Johnston's advocacy efforts or to get involved, visit AOT4AlleghenyCounty.com or email [email protected]://tonymantor.comhttps://Facebook.com/tonymantorhttps://instagram.com/tonymantorhttps://twitter.com/tonymantorhttps://youtube.com/tonymantormusicintro/outro music bed written by T. WildWhy Not Me the World music published by Mantor Music (BMI)
Chapter 1: What is the premise of Ruth Johnston's story?
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. 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?
My son is 38 now, so he's a little older. Nobody was identifying autistic unless they were can or autism back then. And so he wasn't identified till 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.
Chapter 2: How was Ruth's son diagnosed with autism?
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 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 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 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.
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.
Chapter 3: What challenges did Ruth face as a parent?
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.
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?
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.
Now, you have to go to the court system in order to do this. Is that correct?
Chapter 4: What is Assisted Outpatient Treatment (AOT)?
Yeah, it's a civil, probably a probate court judge that set up to do this.
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 were 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.
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? 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.
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.
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Chapter 5: How does Anosognosia affect treatment?
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.
That makes complete sense. Your son was first diagnosed autistic, correct?
Yes.
Then as he got older, his psychosis started developing over a period of time.
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 you 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.
So was that crisis deemed anosognosia?
Yes.
Can you expand on what that is to the listeners for us?
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Chapter 6: What steps is Ruth taking for change in Allegheny County?
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.
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, you're right. It's a genuine damage. Because schizophrenia 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. 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 what 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 were 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. 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.
That's one thing autistic people are very well known for, and that is they are very structured.
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Chapter 7: How can the legal system better support mental health?
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, OK.
I think it would have worked, but when I talked to the county, apparently they just dismissed it. They just didn't believe. 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? 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. 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.
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.
That's very interesting that she contributed. What were some of the findings that she talked about?
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Chapter 8: What resources are available for advocacy?
So now to hear autism could develop into that between 5% to 35%, that's a huge number.
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.
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. 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 the gavel, it's over.
You can't even give them a hug on the way out of the courtroom. It's over. And you're not going to see them for a long time. It's horrible. And the thing is, people with schizophrenia don't get parole because the parole board is looking at things like, did you get a high school 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.
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.
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