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Halting Schizophrenia Before It Starts

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Halting Schizophrenia Before It Starts

Your Health

Halting Schizophrenia Before It Starts

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STEVE INSKEEP, HOST:

Today in Your Health, we report on a way to fight schizophrenia. Among mental illnesses, nothing comes close to the cost of that disease in dollars and in emotional suffering. About 1 percent of Americans have been diagnosed with it. We spend more than $65 billion per year caring for them. Most treatment options have not improved over the past generation. Now we have a story of a controversial new approach gaining steam in California. It aims to catch the disease before it even really starts. Amy Standen of our member station KQED in San Francisco reports.

AMY STANDEN, BYLINE: About a year before her own life began to fall apart, Tiffany Martinez went to spend some time with her father. He was homeless, unbathed, living on the streets of Fresno, California.

TIFFANY MARTINEZ: He would talk about things like his scars that he had on his arm, that there were these faces in them. I remember asking him, what do you think happened, dad? And he goes, well, I think I died. So I'm like, how are you here right now? And he kind of looked confused, and he didn't know how to answer that question.

STANDEN: Tiffany's father had schizophrenia - had had it for years. This means Tiffany was 10 times more likely to develop the disease than most other people. And that terrified her. She was just starting college; she had friends, a boyfriend. To her, schizophrenia meant losing everything.

MARTINEZ: That was probably, like, one of my number one fears was, oh, my God, I'm going to become my father. You know, it's a chronic, life-long disorder.

STANDEN: Freshman year, she started noticing strange things - a fleeting glimpse of a shadowy male figure wearing a hat.

MARTINEZ: It was like one of those hats that, like, Oliver Twist wore (laughter).

STANDEN: Then, one day in history class, a voice.

MARTINEZ: She said something to me, and it was the clearest voice I'd ever heard - not outside my ear, but it felt like she was in my ear. I look to my left thinking maybe there was a girl next to me. And so there was nobody next to me. My friend wasn't there. The chair and the desk was empty. Everybody was looking forward at the professor, and I thought - I'm like, oh, crap.

STANDEN: A school nurse referred Tiffany to a program that was just starting up near her college in Maine, called the Portland Identification and Early Referral program, or PIER. PIER was designed for young people like Tiffany who might be starting the slow slide into schizophrenia. Its director was a psychiatrist named Bill McFarlane.

BILL MCFARLANE: One of the most common descriptions is the sense of a presence in the room. Now, that's not technically a hallucination because it's a sense. And who is it? Nobody. Why are they there? Don't know.

STANDEN: This is key. The sensations are weird and troubling, but there's no story attached to them yet, no beliefs or delusions. It is not yet schizophrenia. To McFarlane and others, this is a precious window of opportunity, a chance to intervene and maybe prevent the disease from starting. Sometimes when the symptoms are severe enough, that includes a prescription for an antipsychotic drug. McFarlane and others believe that in low doses, drugs can keep those strange sensations at bay. Meanwhile, the programs also offer what's essentially a two-year, full-court press towards mental wellness - family therapy, individual therapy, job counseling, peer support. And when you talk to Tiffany today, it is this part of the story where she chokes up - not the part where she feared she was losing her mind, but the part where she got help.

MARTINEZ: I forgot to ask for tissues.

STANDEN: The people at PIER, she believes they saved her life.

MARTINEZ: I think it's just feeling relieved to have the possibility of recovering from a chronic illness that you wouldn't normally think you could be in recovery from. And to live a normal life is just amazing.

STANDEN: Tiffany got her normal life. Today she's symptom-free, off the medications, studying to be a nurse practitioner. But here's the thing - it turns out that it is impossible to know why this is so, why Tiffany dodged the schizophrenia bullet. That's because most experts agree that it's impossible to predict who will get schizophrenia and who won't. With teenagers in particular, there are just too many variables.

ALLEN FRANCES: No one's harder to diagnose than a child or a teenager.

STANDEN: This is Allen Frances, a former chair of the psychiatry department at Duke University and a vocal critic of the idea of schizophrenia prevention programs.

FRANCES: They're experiencing a tremendous amount of pressure. There are rapid developmental changes from visit to visit. The tendency to overdiagnose is particularly problematic in teenagers.

STANDEN: Frances, like many experts, points to studies showing that if you take three kids, all of them experiencing those weird, early symptoms, only one will get schizophrenia. So what about the other two? Frances says these kids are wrongly labeled and stigmatized. Their parents are terrified. And in many cases, they will be prescribed antipsychotic drugs, which can have serious side effects and haven't been studied well in children.

FRANCES: We have to be very careful of any new fad in psychiatry. The field has been filled with fads in the past, and often we learn in retrospect that they've done much more harm than good.

STANDEN: But what Frances calls a fad is to others a model for mental health care. Yes, these programs might dispense psychiatric medicines, but they also nurture kids in nearly every aspect of their lives. To see these programs in action, the best place to go today is California, where over the last few years, about a half-dozen programs have sprung up based on the PIER model. One, in San Diego, is called Kickstart. Like the others, it's paid for by a state tax on millionaires that funds mental health. Services are offered for free.

ANDREA VALLEJO: You got it. You got it. Pull it in a little bit.

STANDEN: One perfect Southern California afternoon, a therapist named Andrea Vallejo is helping a couple of teenagers, all Kickstart clients, get their kites into the air.

VALLEJO: Hold it right there. It's got good wind.

STANDEN: Sitting on the grass nearby, a 10-year-old named Anthony is showing some older kids how to play Spit.

ANTHONY: If it's the same, you have to put in two others.

STANDEN: Joseph Edwards, Kickstart's assistant program director, says for kids who might be developing schizophrenia, just being outside with friends is a kind of therapy.

JOSEPH EDWARDS: They'll want to isolate. There's sensitivity to a lot of stimulation. And a lot of times we'll see what we call day-night reversal, where they'll stay up all night and then go to sleep in the daytime.

STANDEN: Edwards says if a kid is really isolating, a Kickstart worker will drive to their house and cajole them out of the rooms. The entire family comes in for regular group therapy. The kids get tutoring. They do art projects, learn to eat more healthfully and there are lots of field trips.

ASHLEY WOOD: Go get it. Go, go.

STANDEN: At an arcade in a strip mall, we meet Ashley Wood, one of Kickstart's occupational therapists.

WOOD: Hit him hard. Yeah, there you go.

STANDEN: Wood brought her client, 13-year-old Tony, here as a reward for being cooperative in therapy. She has an easy laugh, and she teases him gently to pull him out of his shell. As with Anthony, the card-player, we aren't using Tony's full name because he's a minor.

WOOD: When we first met, he was so quiet. He's like, who is this chick?

TONY: I was being a jerk.

WOOD: What's up?

TONY: I was being a jerk.

WOOD: You weren't being a jerk. You were feeling me out.

STANDEN: Tony had been getting in fights. He was angry at his mom, angry in school and there was something else...

TONY: I used to see certain stuff.

STANDEN: What did you see?

TONY: Like weird objects.

STANDEN: Like what? I ask. But that's all he wants to say.

WOOD: Do you have any questions?

STANDEN: Are Tony's symptoms the beginnings of schizophrenia, or just the routine weirdness of a teenage brain taking shape? No one - not Wood, not his therapists - can say for sure. Wood says what she's teaching him will be helpful either way.

WOOD: When he's frustrated at school or at home, instead of immediately responding, kind of finding a way to communicate. So we're kind of working on the impulse control as well. He's come a long way, I think.

STANDEN: When you talk to people who have been through these programs and ask what helped them, it's not the drugs, not the diagnosis. It is therapists like Ashley Wood, lasting one-on-one relationships with adults who listen.

MARTINEZ: To share such personal, intimate details, you know, to have these people working so hard on it and so devoted and invested in the work. And so, you know, it's like getting a chance. Just the program - what it stands for alone is hope.

STANDEN: Devoted therapists, kite-flying field trips, counselors who stick with you even when you're being a jerk. It's the kind of care most of us would want for any kid that's having problems. But to receive it, these kids risk being labeled and maybe medicated for a disorder they may never have. For NPR News, I'm Amy Standen.

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