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

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 your 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 thirty eight now, so he's a little older.
Nobody was identifying autistic unless they were cann 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 homeschold 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 shared terror and misery
because he was not easy and when he was when
he was thirteen, we started to see the onset of
that something. I should talk about what it looked like
for him to start to get schizophrenia, because it looked
over it took at least ten 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 gonna make sure everything
is perfect, You're gonna do all of these things. And
I'm thinking, when they turn eighteen and some of them
get schizophrenia, you're not gonna 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 assist an 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, missus 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.
Yeah, that's pretty sad to hear. You're saying 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 mandate in 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?
Yeah, to civil probably a probate court judge that's 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 ask.
So one of the pieces is how responsive would the
court system be would 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 thirty days or absolutely can predict it
within the next thirty 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 love to 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. He has 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 sell for others. Basically,
when you're in a state or a county, you've got
nothing you can do, and so that would allow you
to submit that as evidence basically assisted out patient 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 thirteen, he suddenly lost the ability
to do math. He'd never been when 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 twenty three 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 twenty six and we were in crisis.
So was that crisis deemed anosignosia?
Yes?
Can you expand on what that is to the listeners
for us?
Okay, let me explain. Anosygnosia is just a Greek word
for 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. Some people who have a stroke,
especially if it's on the right side, they may it
may take them a couple of days or a week
to understand that they're paralyzed, and their neurologists 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 anosignosia. Or you have anorexic girls who
really believe they're fat and cannot tell they have the problem.
That's anosygnosia and base severe bipolar disorder and schizophrenia and
schizo effective. 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 I 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, well, I think you just
weren't making sense. So we say, well, you were going
through something. No, I wasn't. That's anosignosia.
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.
That's right.
So it could take three, four or five six years
before it actually shows itself as a problem.
It'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.
You can't that's the problem. Essentially. Back in the sixties,
our legal system changed the way we handled mental illness
to take away most involuntary treatment because, especially in the sixties,
it was being seen as a civil rights issue, and
so everything was shifted so that the people have to
want the treatment. Few have anosidnosia, 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
out patient 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 and 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 happening. It's wrong.
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. Okay, 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. Okay, 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.
Gizophrenia 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 twenty eighteen 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 first 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 states 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.
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 some 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. 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,
talk 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 twenty thirteen 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 Pennsylvania Medical Center.
That's very interesting that she contributed. What were some of
the findings that she talked about.
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 five percent
of autistic kids growing up to have paranoid schizophrenia and
thirty four percent 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 a maybe twenty percent. 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 eighteen 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,
the waste gizophrenia develops. It's like it's on a timer,
and it develops between say, age thirteen and age say
twenty six, 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 or his dad said he
thought that too, and once they're eighteen, you lose your
power to force them. And then he tried to persuade them.
We all know what it's like arguing with the stubborn
autistic kid who thinks you're wrong.
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 cooccurrences that did not surprise me.
This is the first time I've heard of autism developing
into schizophrenia.
I know.
I know so now to hear autism could develop into
that between five to thirty five percent, that's a huge number.
Yes, I know. So he was sentenced in twenty seventeen.
It took a long time from to get sentenced, from
twenty thirteen to seventeen 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 ten to twenty years. Bang the gabble, 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 lord 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, 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.
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.
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 forty five seconds to
a minute thinking of his response. After that, he told
me two words. Those two words common sense.
Okay. Common sense is assisted out patient. 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. If you were in a terrible car accident, okay,
and there's a couple of cars and there's people being
hauled out of terrible situation. The ambulances pull up and
they say, with a loud speaker, ambulance over here, folks,
come on. That's what it's like. Some people could do that,
but number of them are I don't know, unconscious, leg's 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.
Back in the sixties, 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 sixties, but
we know a lot more now and it no longer
makes sense.
Well, autism was first diagnosed in the early nineteen hundreds.
They described autism as a symptom of child schizophrenia, and they.
Called it early. They called it schizophrenia.
Priy cos you would think, here we are twenty twenty five,
since nineteen ten, we've come a long way. Things have
gotten better, medication understandings coming along. We 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 is the win win for everyone involved.
I know. Listen, the problem is that there's a loud
lobbying voice against this. Actually, before I tell you, I
just 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, Abilifi.
He began calling home three times a day for the
short time he could tell, 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 medicines turn into a drooling monster.
Now it's always getting better, okay, voices against it. 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 person disorders, people depressions
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 a 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 lot on the Rosebuds 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 them 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, 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 gonna 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. 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 gonna
want it and it's gonna be too late. Join me
in trying to get there. Gotta be autism parents in
my county that could join me.
How do people contact you?
I live in Allegheny County and I set up a
website AOT four spelled out as a word for AOT
for Alleghany County a L E G h E n
Y County dot com. And I also have that as
a Gmail address, AOT for Alleghany County at gmail. At
the website, I've got some information about assisted out patient 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.
Yeah. Absolutely, this has been great. I appreciate you coming on.
I was delighted when I heard of your project. So important.
Thank you for talking about it.
It's been my pleasure. Thanks again. Thanks for taking the
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