- [Jeff] Welcome to "Healthy Minds."

I'm Dr.

Jeff Borenstein.

Everyone is touched by psychiatric conditions, either themselves or a loved one.

Do not suffer in silence.

With help, there is hope.

(gentle music) Today, on "Healthy Minds."

- Nobody is more than a degree separated from someone with autism anymore.

The epidemic's that, it's that pervasive.

And if you ask around at work, ask around wherever, you will find someone that's going through it.

- That's today on "Healthy Minds."

This program is brought to you in part by the American Psychiatric Association Foundation, the John & Polly Sparks Foundation and the WoodNext Foundation.

(gentle music continues) Welcome to "Healthy Minds."

I'm Dr.

Jeff Borenstein.

Today I speak with Steve Earle, who shares his experience as a father of a child and now a teenager with autism, as well as his experience in recovery from chemical dependency.

(gentle music continues) Steve, thank you for joining us today.

- Glad to be here.

- I wanna jump in and talk to you about your role as a father of a child, now a teenager, with autism.

Tell us what that's been like for you and what it's been like for him.

- Well, (sighs) let's see.

Autism is, first rule about autism is, the bumper sticker to me is, you know one person with autism; you know one person with autism.

And the cliches get in the way.

They're not all Rain Man.

John Henry makes great eye contact, and he has pretty severe autism.

He's nonverbal, and he's had... He was like, you know, had 26, 27 words at 14 months, way ahead of schedule.

Wasn't quite putting sentences together, but he recognized letters and numbers.

And then at 19 months, no words whatsoever.

It just happened overnight.

And my niece, who was traveling on the road with me and my ex-wife as a nanny at the time, actually noticed it before we did that he had stopped talking.

'Cause she was with him hours in the day when we weren't.

And it just... And she kind of grabbed us on the bus one night after she put him to bed, and we were leaving New Orleans, and then we went through this long thing of, you know, denial and trying to figure it out.

And I think I pretty much knew what it was because I had... My sister, one of her grandkids, well, my step grandkid has autism, and I just... But, you know, you go through getting their hearing tested and all of that stuff, you know, first.

And we went through all that.

Then finally, we separated, just as he was diagnosed, the way it worked out.

Basically, I was starting a tour, and Allison wasn't touring with me anymore 'cause the baby was little, and she... Well, he toured with us when he was teeny.

But, you know, we were trying to figure out what was going on with him.

So she went to Nashville, where I also have a home.

We were living in New York.

He was born here.

And she had him, took him to Vanderbilt, and he was diagnosed there.

I was in Australia, and she called me.

And she said, "Okay, it's autism," and, you know, went through diagnosis.

And she was upset, and, you know, of course, we're dealing with the time difference, and I'm after a festival in those... And I was at a festival in Australia, and Crosby, Stills & Nash were on it.

And I went immediately to Stephen Stills because he, in what he refers to as his third litter, has his family, they've got an adult now with autism.

And Kristen, Stephen's wife, had become sort of the autism tiger mom in LA by that time.

She started me out, and then I had a guy... I'm in recovery.

There was a guy in my home group that had a teenager with autism, and he helped me try to figure out what to, you know, where to look for services in New York City.

And we started out, you know, there were sort of two things we were met with in the beginning.

And that was that there was this divide at that time, 16 years ago or, well, it was 15 years ago, 14 years ago, I guess, 'cause he's 16 now, between two ways of treating autism.

One was the ABA thing, which is the oldest and the most proven, you know, the applied behavioral analysis thing, which really was developed, to my understanding, for people that had traumatic brain injuries.

And it sorta is, they're exercises, at the core of it, and routines that are designed to kind of help a brain rewire itself, and it makes... And of course, I was the hippie.

And I kinda lean towards the floor time model, which was, the two things were diverging, when the truth is stuff in both of those things work for these kids is what they've discovered since.

And most of the schools do both, whether they'll admit it or not.

And we finally decided that the ABA thing was the way to go, just 'cause we had to make some sort of decision with the schools that were available to us in New York.

And we went to what was then called the McCarton School, and he couldn't quite get in, 'cause he wasn't quite three, so we had to wait a while.

And we discovered, for one thing, Allison, at that point, decided she wasn't coming back to New York, and we weren't gonna be together.

So she started looking for services in Nashville and discovered there were virtually none, especially compared to New York.

So she moved back to New York, and we enrolled him in the school that he's still in to this day.

It's called Keswell School now.

The name changed about 10 years ago, I guess.

And it's the only school of its kind that I know of in the United States.

What's recommended for kids with, like John Henry, that have profound autism, that are nonverbal, he is... And even that is not the same for everybody.

He's really, really, really smart.

But he doesn't really read, and he doesn't write, and he doesn't... Fine motor things are still hard for him.

You know, everything's a different learning curve.

But he figures things out, like, but he's like... The school is 40 hours a week.

And the ratio of teachers to students is one to one, not students and babysitters, students and teachers with a degree.

Therefore, it's really expensive.

But the fact is that's the model.

That's what every kid should be getting this, like John Henry, and virtually nobody gets it.

And if you don't live in New York, the only other place I ever heard of that had a one-to-one ratio like that, there's another school in New York that's doing a one-to-one ratio now, from what I understand, in Brooklyn.

They managed to increase it.

They're doing it differently.

One kid stays with the same teacher the whole day.

They rotate in a room in John Henry's School.

To my experience with this, that just seems logically to be a way better way to do it, because the kids don't burn out, and the teachers don't burn out.

This is really intensely hard work, and the turnover in it, people that start out to do this, some of... We lose kids because they quit, I mean teachers because they quit, or because they get hired away for private work, you know, by people with a lot of money.

There's a lot of money in New York.

And the school is, I'm not gonna get into numbers, but it's more than I can afford.

I've been married too many times to have accumulated very much so.

I work for a living when it gets... Right, I make good money, but I work for a living.

And I just had to, I had to... I had a really good friend that walked me through the steps of trying to get it funded.

We've had two hearings over the 16, or 14 years, or I guess 13 years he's been there now.

And we won both of 'em.

And I've gotten anywhere between 90 and 100% of his tuition awarded by the city every year.

And now they don't even call us in for a hearing anymore.

They just give us, send us a notice and say we got the money every year.

- I wanna emphasize two important points that you made, which is, number one, at the beginning, making use any friends, family members that may have experienced this in their life, getting that support, getting that guidance from people.

- Yep.

Yeah.

- Really making sure that the child has the best possible support that's available, and obviously, more should be available around the country, and making sure that the resources that are really obligated to be available, that you make use, that you have the advocacy to get those resources to support that child.

I think those are two important messages.

Anybody who is living with a new diagnosis of autism for their child right now, they need to hear that.

- Nobody is more than a degree separated from someone with autism anymore.

The epidemic's that, it's that pervasive.

And if you ask around at work, ask around wherever, you will find someone that's going through it.

Now, look, now I'm gonna say, this is where I'm gonna probably, you know, make somebody mad.

But here's what I know.

The internet's a really bad place for medical information.

There's way more stuff that's not true than there is stuff That's true.

I love the internet.

I use it all the time.

But I'm using it for research, you know, for when I write a song or a book or something, nobody dies, and it doesn't affect anybody's health.

And I just... Autism's not caused by vaccinations.

There's half the kids in John Henry's school were vaccinated, half of 'em weren't, he was.

It's environmental to some degree, and it's genetic to some degree.

There are too many families... I know several families with... There's a family at John Henry's School, twins who have autism, and they're both, they're very different but almost... The levels of autism, if you wanna say that, are really close to the same.

And they separated them in classrooms actually, you know, 'cause they kind of had to at first, 'cause nobody could really communicate with 'em, 'cause they didn't want to communicate with anybody but each other 'cause they're twins.

- Your point, I think, is very important, that you wanna make use of reliable medical information.

- Absolutely.

- And often on the internet, that's not the case.

You wanna have a professional that you can trust.

And perhaps you could find them through an advocacy organization or through friends, family who have lived with this.

But you want that accurate information.

- Absolutely.

- I wanna ask you about, when John Henry is home, what types of activities do you do with him, does he do?

What's his day like after school?

- You know, it's changed over the years.

He's been there, he was diagnosed when he was two.

He's been at Keswell School since he was three.

The way, what ended up happening, it's a long story, it ended up that way, is to keep him in New York... His mother wanted to go back to Tennessee.

So like, I don't know, six years ago, seven years ago, maybe it's longer than that, I don't know, at some point, I came off the road nine months of the year, which, I used to tour year-round to some degree.

And I stay off the road from September, basically from Labor Day to Memorial Day, I'm here.

And Memorial Day to Labor Day, I'm on a tour bus, and he goes to his mom in Tennessee.

And we came to that agreement because she knew that there wasn't anything for him there, and she wanted to live there.

And at that point, puberty was coming, and we knew it, and probably... He's a boy, and it's probably better that that be my shift anyway.

- Sounds like you were able to arrange something that worked for each of you and works for him.

- It does, it works for him the vast majority of the time.

You know, for me and his mother, it's work sometimes.

And, you know, it's the way that is.

But we've been able to pretty successfully co-parent so far.

- I wanna shift gears a little bit.

Obviously, to be a parent of any child can be difficult, and certainly a child living with autism.

And for you, as a person in recovery, I'd like you to speak about how recovery has helped you in supporting your child.

- I'm a old-school, 12-step guy.

You know, I don't do anything but... You know, to this day, I've got 31 years.

And it'll be 32 in September.

And, you know, knock on wood.

But I go to meetings.

I sponsor people, and I call my sponsor.

I knew what to do all along.

I was pretty hardheaded.

I didn't get clean till I was 40, or not quite 40, I was 39, and I had to get locked up.

I had to catch a charge finally and go to jail.

And I furloughed outta jail to a treatment center just to get out of an orange suit.

I didn't really go to get clean.

But at some point there, I decided I didn't wanna die, and I started paying attention.

And when I came out, I went to a meeting on the first day, and I've been clean ever since, but it's... But I grew up with the steps and the Serenity Prayer on the wall.

My grandfather got sober right here in New York City right after World War II, had no intention to going back to Northeast Texas.

But his stepfather died, and his mother drug him back kicking and screaming to run the family hardware store in Jacksonville, Texas, 'cause that was her livelihood.

So he had to go back.

That's why I've been a Yankees fan all my life, and beginning when I was six years old.

I inherited pinstripes from him, even though I was in Texas.

And I grew up with the steps and the Serenity Prayer on the wall, 'cause he started every meeting in Northeast Texas, that's what he did, and that service work, you know, in the program, we don't do it for other people really.

We do it for us.

We're taught that that's how you stay clean.

And having a lot of that under my belt helps with this.

Look, it's no... I have two other sons.

One's gone.

One passed away of an overdose of fentanyl.

You know, it's been, God, how long ago?

This is '26, six years ago now, and a disease he inherited from me.

But he couldn't get clean, and it killed him.

And then I have another son who's got, you know, two kids and doing great and in Texas.

And I just, you know, this is not my first rodeo.

But it was no secret, you know, for Justin, who's gone, and Ian, who's still here, how much better a father I was, you know, for John Henry than I was for them.

And I mean, I was probably a relatively good dad for a junkie, but I was still a junkie, and I was gone a lot, and when I was home, I was in the bathroom a lot.

That's just the reality of all that.

So it's hard enough to be a husband or a father when you do what I do for a living, 'cause you travel all the time.

And it's not an excuse, but it is a fact.

I know people that do it.

I know people that're, you know.

You know, and so I finally figured out the secret to, you know, staying married was just don't get divorced, (laughs) and it's no... And even that didn't work for me last time.

It wasn't, you know.

But I'm retired, defeated.

I'm not gonna try that again.

It's me and John Henry from here on out.

- Well, I appreciate you sharing all that.

I'm sorry that you lost a child, an adult child, to chemical dependency.

That is an illness that some people get on the path to recovery, and unfortunately, some people don't, and some of those people end up passing away.

- There's a lot of survivor guilt in recovery.

There just is, you know.

It's just part of the deal.

- In addition to 12-step, are there other things that you do, such as exercise, that helps you maintain your recovery?

- Yeah, I kind of, it's been dibs and dabs of, you know, the way it started.

But it took me 10 years after I quit everything else to quit smoking.

And a regular exercise program started because I had hep C. And my liver was in pretty good shape, but I had the virus.

And back when... I refused to be treated for it for a long time, 'cause everybody I knew that was treated got so sick.

And then a doctor here in New York talked me into it.

And it was just a matter of superior bedside manner.

He just made sense to me, and I did what he asked me to.

And I turned out I was a super responder.

And I had no virus load after the 13 months.

Nowadays, you don't get sick.

It only takes a few months.

The drugs are far superior.

But when I did it, it was really hard.

But somebody told me... Well, first I thought, I'm gonna feel like hell for 13 months, I might as well quit smoking.

(laughs) So I quit smoking.

And somebody else told me that exercise would help, and I started going to the gym and doing a half an hour to 45 minutes on an elliptical machine.

And that's still pretty much what I do.

I drop John Henry off at school, and then I walk back the three miles from the Lower East Side to Battery Park City every day, no matter what the weather is.

And on the road, it's about the elliptical machines more than anything else, 'cause you can't always walk to the gig.

'Cause sometimes there are interstate highways and various other dangerous infrastructure between you and wherever you're gonna play.

- I want to ask you a little bit about the music and how your life experiences has brought about the music.

Tell us a little bit about that.

- Well, I mean, I'm just, what I do, I'm a post-Bob Dylan singer-songwriter.

So I learned to do this job, you know, with the bar very high.

And, you know, I try to tell stories.

I'm a story songwriter mainly, you know, I write... Some people think of me as a political songwriter, but I'm not.

I write more songs about girls than I do anything else, even though I'm 71 years old.

I don't know what that's about, but there's not... You know, I will write songs about what's going on around me, and I don't... You know, all those things go together.

You know, I just happened to be a singer and a songwriter, but it's all about what I absorbed culturally, going back to, you know, the people my dad grew up with, my uncles, and I had two uncles, one who was my dad's older brother, who was the best nine-finger piano player in Northeast Texas.

And I got all the Bob Wills and Hank Williams and stuff from him.

And then my mother's half-brother, who was five years older than me, and I got my first three guitars from him as hand-me-downs, I also got the first drugs that I took from him.

So there's that.

And he died of this disease that almost killed me when he was in his early 50s.

So it's, you know, all that stuff's part of my story.

So it all ends up in the songs in one way or another.

- I wanna ask you about the charitable work that you've been involved in to support families with autism, and in particular the school that John Henry attends.

Tell us about that.

- Well, the school had been around for a while, I guess, I don't know, 10 years.

But when John Henry started there, it was, it operated, you know, in the red all the time.

And then I just finally used the example of, you know, Neil Young, who I've, you know, known a little for a long time, and, you know, he had his Bridge School Benefit, 'cause he had two boys that... He had two special needs kids, and he supported their school.

So I decided I could do the same thing here in New York City.

And we started, we call it John Henry's friends.

It's every year.

This like the 10th year or 11th year coming up.

I can't even, I can't remember, but anyway, I try to... The school's been operating, you know, in the black ever since.

And we got music.

It was important to me that there be a music therapy program there, which there wasn't.

And now there's a full-time music therapist, who I actually found 'cause I found him to, 'cause he was seeing John Henry privately 'cause I... John Henry doesn't know any... He doesn't sing any lyrics 'cause he has no words.

He still, haven't been any words at all.

But he knows over a hundred melodies.

I mean, I've, like... When he was about five or six or something, I was cooking dinner, and he was like, you know, on his iPad.

He communicates a little, few signs, but mainly Proloquo, which is a program on an iPad that a lot of kids with autism and a lot of nonverbal people, period, use, and he just... But he also uses it to look at, you know, whatever, you know, movies and listen to music.

But he's there on his iPad, and I don't know, he's got headphones on, so I don't know what he's listening to.

I'm cooking, all of a sudden I hear (hums melody).

Only now it would be (hums low melody) because his voice has definitely changed, but he... And, you know, he finds all kinds of stuff.

It's also, it can be funny.

He navigates the iPad really well.

And just, music is a big deal.

But he just, he looks for all kinds of stuff.

"The Sound of Music," he was obsessed with that movie from the time he was tiny.

And he's founded on his own on several different platforms.

It's amazing.

- I wanna just go back to speaking a little bit about the charitable events that you do.

Tell us about the concert and how that's worked, how many people have come, what that's been like for you?

- We started out at Town Hall, which holds 1,300 people.

And it started out as a traditional concert.

And we did that for years.

You know, I'd try to get a couple, as many New York people as I could, just to cut down on the costs.

But Jackson Browne headlined the first one.

It's usually four or five acts, and we finally... You know, I asked him every year, and I knew he would say yes eventually.

We finally, the ultimate, you know, like... My band would serve as the house band so people didn't have to bring a band if they didn't want to, and my band was really good.

And Bruce Springsteen did the show four years ago.

And that was like, we were never gonna beat that for, you know, when it came to a standard concert format.

Plus I figured out over the years, Emmylou Harris and I did these things called Concerts for a Landmine Free World back in the '90s.

And it was for Vietnam Veterans Foundation, who were one of the organizations working with people who were injured by landmines in Southeast Asia and Eastern Africa.

So we started doing, we pioneered the guitar pull as a concert format.

And that's like, based on something that happens in Nashville, because when I first moved there in the '70s, there was no place to play original material.

It's not like that anymore.

But then, we sat around in each other's living rooms, and the guitar went around, and we just sort of played each other our new songs.

So this is like four artists on a stage, sitting in chairs, and one person plays a song, and we accompany each other and tell stories, and we go through that.

And Emmy and I have been doing that for the Landmine Concerts.

And it's way more cost efficient than trying to put, you know, four or five artists on stage in front of a band.

And so we switched over to that format a few years ago.

But we've had Bruce.

We've had, Jackson Browne's done it twice now, and including, everybody that had done it up to that point did our virtual one that we did in 2020, because we had to do it that way that year.

And the school depends on the money.

And, you know, we're talking about what's gonna happen when I'm no longer there to do it.

But right now, I'm still there to do it, and I'll do it as long... John Henry doesn't age out till he's 22.

So we have a few more years left.

- Well, I wanna thank you, Steve, for joining us today, and for sharing your experiences that I know will be very useful for people to hear about.

Thank you so much.

- Thank you.

(gentle music) - I'm inspired by how Steve Earle has been so supportive of his son who's living with autism.

If you have a child with autism, don't let him or her suffer in silence.

Make sure they receive the care that they deserve.

Remember, with help, there is hope.

(gentle music swells) Do not suffer in silence.

With help, there is hope.

This program is brought to you in part by the American Psychiatric Association Foundation, the John & Polly Sparks Foundation, and the WoodNext Foundation.

(gentle music continues) (gentle music continues) (gentle music continues) (gentle music continues) (gentle music fades)