Anatomy of an Epidemic (52 page)

When the center opened in 1985, Berrick and others sought to
hire consulting psychiatrists who would use psychiatric medications in a “conservative” fashion and never for purposes of “behavioral control.” Some used the drugs more than others, and then there was Tony Stanton, whom the agency hired in 1987 to oversee the children’s residential program. In the 1960s, he had trained at Langley Porter Hospital in San Francisco, which at the time emphasized the “importance of environment” to a child’s mental health. Stanton’s own “attachment theory” convinced him of the importance of emotional relationships to a child’s well-being. Then, in the late 1970s, while he was in charge of a psychiatric ward for children at a county hospital, he assigned a “mentor” to every child. The children weren’t medicated, and he saw a number of them become attached to their mentors and “blossom.”

“That experience allowed me to see this therapeutic principle in action,” Stanton said. “You just can’t organize yourself without a connection to another human being, and you can’t make that connection if you embalm yourself with drugs.”

When a child enters Seneca Center’s residential program, Stanton does not ask “what’s wrong” with the child, but rather “what happened to them.” He gets the department of social services, schools, and other agencies to send him all of the records they have on the child, and then he spends eight to ten hours constructing a “life chart.” As might be expected, the charts regularly tell of children who have been sexually abused, physically abused, and horribly neglected. But Stanton also tracks their medication history and how their behavior may have changed after they were put on a particular drug, and given that the children who arrive at Seneca Center are seriously disturbed, these medical histories regularly tell of psychiatric care that has worsened their behavior. “I’ll have people say, ‘We want to try the child on Risperdal now,’ and I’ll say, ‘Let’s take a look at the chart and see what happened before. I don’t think it will be helpful,’” Stanton said.

The children regularly arrive at the center on drug cocktails, and thus it can take a month or two to withdraw the medications. Often the children, having been repeatedly told that they need the drugs, are nervous about this process—“One kid told me ‘What do you mean you are taking me off my meds? I’ll destroy your program,’”
Stanton said—and often they do become more aggressive for a time. Staff may have to use “physical restraints” more frequently (they have been trained to hold the kids in “safe” ways). However, these behavioral problems usually begin to abate and by the end of the withdrawal process, the child has “come alive.”

“It’s wonderful,” Kim Wayne said. “Most times when the kids come in, they can’t keep their heads up, they are lethargic, they are just a blank and there is minimal engagement. You just can’t get through to them. But when they come off their meds, you can engage them and you get to see who they are. You get a sense of their personality, their sense of humor, and what kinds of things they like to do. You may have to use physical restraints for a time, but to me, it’s worth it.”

Once they are off meds, the children begin to think of themselves in a new way. They see that they can control their own behavior, and this gives them a sense of “agency,” Stanton said. The Seneca Center uses behavior-modification techniques to promote this self-control, with the children constantly having to abide by a well-defined set of rules. They have to ask permission to go to the bathroom and enter bedrooms, and if they don’t comply with the rules, they may be sent to a “time-out” or lose a privilege. But the staff tries to focus on reinforcing positive behaviors, offering words of praise and rewarding the kids in various ways. The children are required to keep their rooms clean and perform a daily chore, and at times they will help prepare the evening meal.

“The question of feeling in charge of yourself and being responsible for yourself is the central issue in their lives,” Stanton said. “They may only partially get there while they are with us, but when we are really successful, we see them develop this sense of ‘Oh, I can do this; I want to be in control of myself and my own life.’ They see themselves as having that power.”

Even more important, once the children are off the medications they are better able to form emotional bonds with the staff, and the staff with them. They have known rejection all their lives, and they need to form relationships that nurture a belief that they are worthy of being loved, and when that happens, their “internal narrative” can switch from “I’m a bad kid” to “I’m a good kid.”

“They come in thinking, ‘I’m crazy, you are going to hate me, you are going to get rid of me, I’m going to be the worst kid you have ever seen,” said therapist Julie Kim. “But then they become willing to form [emotional] attachments, and that’s such an amazing thing. You can see the power of a relationship to change a kid, and even the kids who seem the toughest when they come in here, who don’t make any progress at first, eventually do.”

Although Kim and others can tell anecdotal stories of children discharged from the residence program who have returned to ordinary schools and done well, the center has not done a long-term follow-up of the children that have gone through their residence program. The only statistical information the center has to show that its residence program works is this: 225 children lived at its residences from 1995 to 2006, and nearly all were discharged to lower-level group homes or to a foster home or to their biological families. Their time at Seneca Center at least turned their lives in a new direction. And yet, it is difficult to be optimistic that their lives continue down that path. Their emotional and behavioral problems do not completely go away, and so many of the discharged children—and perhaps most—are remedicated. They return to a world where that is the norm. Their time at Seneca Center may primarily provide them with a temporary oasis from a society prone to asking “what’s wrong with them,” and thus, if we want to assess whether the no-medication policy of the center’s residence program is providing the children with a “benefit,” instead of looking to the future, perhaps we should focus on the present and look at what it is like for the children to have this opportunity to “come alive” for a time and fully feel the world.

I spent two days at the center, and there were three children in particular I had a chance to interact with. One was a twelve-year-old boy I’ll call Steve. When he’d arrived at Seneca Center a year earlier, he’d been so filled with suicidal and self-destructive habits that doctors thought he had suffered brain damage from all of his head-banging episodes. Since then he’d become very attached to Stacy, one of the male staff at his house, and during our interview, he flopped down into a chair, grinned, and immediately took over the conversation. “I hate taking medicine. It is real boring being on
drugs,” he said, and then he began telling us about migratory turtles, a raccoon that had been poking around their house, a trip to McDonald’s with Stacy, and what people needed to do to prepare for an earthquake. All of that was prelude to a story about a comic book he wanted to write, titled
The Adventures of Sam Dune and Rock
, which featured numerous “good and evil” characters, including one who needed to take drugs to keep from going mad. Steve held center stage for at least an hour, and afterward he happily informed Stacy that the interview had been “cold, real cold,” which of course meant that he had enjoyed himself immensely.

I’ll call the two African American girls I met in the Los Reyes house Layla (the a cappella singer) and Takeesha. Their “life charts” both told of nightmarish pasts, and that was particularly true for Takeesha. When she’d arrived at the Seneca Center in 2006, at age seven, she was described as delusional, guarded, suspicious, uncooperative, and very sedated. After we spent thirty minutes or so at the kitchen table, talking about
American Idol
and the trip they had taken to Disneyland, Takeesha asked if we could go outside and play catch with a football. We did that for a while, and then Takeesha got permission to ride her bike in the street, but only if she promised to go only a few houses away in either direction, and suddenly she came to a screeching halt in the driveway. “I’m going to Burger King. What do you want?” she announced. Seconds later she proudly returned holding an imaginary bag filled with a Whopper, French fries, and a Coke, which I paid for with an equally imaginary five-dollar bill, asking if she would please make change. When it came time to say good-bye, Layla asked for a hug, and then Takeesha—having scurried into her bedroom to find something—held out what appeared to be a package of gum, except for the fact that the piece sticking out was clearly metallic in kind.

“It’s just gum!” she squealed when I felt the slight buzz.

The next day I sat in on their class. I spoke briefly with the teacher and several of the aides, and they all said the same thing. “These kids are awesome! We could drug the kids into submission, but for what purpose? I love this place!” I was there with Tony Stanton, and after a while it became evident that our presence was causing a dilemma for both Layla and Takeesha. They were supposed to be paying attention
to the teacher, and they knew that if they didn’t, they would be sent to time-out (there was a steady march of children to the timeout corner), and yet both were clearly intent on making contact with us. We were sitting by the sink, and at last both girls decided they just
had
to wash their hands. As Layla went back to her seat, she couldn’t resist giving us a high-five, even though this was a breach of class protocol. Meanwhile, as Takeesha passed by my chair, she whispered, “Bob Marley, what are you doing here?”

At that moment, I couldn’t imagine any outcome data of a more powerful sort.

Psychiatry and the rest of medicine regularly proclaim that treatments should be “evidence-based.” The solutions we’ve reviewed in this chapter all meet that standard. David Healy’s belief that the psychiatric medications should be used in a cautious manner, the open-dialogue program in Tornio, and the prescribing of exercise as a first-line therapy for mild-to-moderate depression are all rooted in good science. The same can be said of Tony Stanton’s medication-withdrawal policy. Earlier in the book, we saw that children put on stimulants, antidepressants, and antipsychotics often worsen over the long term, and that those who end up on drug cocktails can be said to be suffering from an iatrogenic illness. The medications can be viewed as pathological agents, and thus when Tony Stanton takes the Seneca Center children off the drugs, he is—in essence—providing treatment for a “disease.” The proof that the treatment works can be found in the staff’s observation that the children “come alive.”

Given this perspective, it would be helpful if we could identify a mainstream medication-withdrawal program in adults, one that arises from research into this process. How quickly should the drugs be withdrawn? After the drugs are withdrawn, how long does it take for the brain to “renormalize?” Or does it? Do neuronal feedback mechanisms reset? Do presynaptic neurons begin releasing
normal amounts of the neurotransmitter? Do receptor densities return to normal? Psychiatry has been using psychotropic medications for more than fifty years, yet all of these questions basically remain unanswered. Indeed, people who want to stop taking the drugs have been mostly left to fend for themselves, sharing information on the Internet and through their various peer networks.

However, in the fall of 2009, a major provider of mental-health services in eastern and central Massachusetts, Advocates, drew up a plan for a medication-withdrawal study. Advocates provides services to several thousand people with psychiatric difficulties, and in 2008, when it asked its clients for “new ideas,” many put this at the top of their wish list, said Keith Scott, director of recovery and peer support services. “A number said, ‘Geez, it would be great if there would be a place where I could try to stop taking my medication without being threatened with losing my housing or my services and the relationships that are important to me.’ That seemed extremely reasonable to me.”
²⁴

The medical director of Advocates, Chris Gordon, who is an assistant clinical professor of psychiatry at Harvard Medical School, said that he hoped to obtain funding from either the state Department of Mental Health or a federal agency. Advocates plans to provide both medical and social support to patients in the “drug reduction/elimination” study, and Gordon said that if patients begin to struggle during the withdrawal process, he’d like to see if they can be helped through that crisis without restarting the medications. He’d like to follow the patients in the program for five years, so Advocates can get a sense of their long-term outcomes.

This initiative, Gordon said, is being driven in part by the fact that the mentally ill are now dying twenty-five years earlier than their peers, and that it is clear that the atypical antipsychotics, which regularly cause metabolic dysfunction, are contributing to that early death problem. “We see it all the time. We could name a terrible list of people we know personally and care about who died way too young,” he said.
²⁵

If I had to identify one person in the United States who was doing the most to “change the system,” I would pick Alaska attorney Jim Gottstein. A 1978 graduate of Harvard Law School, Gottstein was hospitalized twice in the 1980s because of bouts of mania, and that personal experience has inspired a lifelong career of fighting to improve the plight of the mentally ill in our society.

During the 1980s and 1990s, Gottstein joined other attorneys in an epic lawsuit by the Alaska Mental Health Association against the state. In 1956, Congress allowed Alaska’s territorial administrators to set aside one million acres of prime federal land as an asset that would fund mental-health programs, but in 1978 the state legislature redesignated the acreage as “general grant lands,” leaving the mentally ill out in the cold. The state basically “stole” the land, Gottstein said, and eventually he and other attorneys negotiated a $1.1 billion settlement.
²⁶
The state gave $200 million and nearly a million acres of land to a newly created Mental Health Trust Authority, with the trust allowed to spend this money as it sees fit, without the legislature’s approval.