By LEE GUTKIND
Published: November 9, 2013
TEMPE, Ariz. — IN 2005, a distraught mother rushed her 13-year-old son to the emergency room for a psychiatric evaluation. The boy was overwrought, consumed by anxiety. The physicians asked the standard questions: Did he want to kill or hurt himself or others? No, was his answer.
The boy’s name was Adam Lanza. In the years between that hospital visit and the day, last December, when he shot to death 26 people at a Connecticut elementary school, there is reason to believe he had guidance from well-meaning therapists, parents and teachers. These efforts were obviously ineffective. What went wrong?
Twenty years ago, I wrote a book about childhood mental illness that focused on the experiences of two struggling young people in Pittsburgh, Daniel and Meggan. At the time, this is what struck me most about the treatment of children and adolescents with mental health problems: Social workers and psychiatrists mostly tried their best but didn’t know what they were doing, really. The science was imprecise and the system was fractured.
Two decades later, we are now able to see inside the brain with startling precision, thanks to sophisticated imaging techniques. And we know a lot more about brain biology. But we have been unable to transform much of that knowledge into definitive treatments.
Caring for the mentally ill adult is challenging. Children are considerably more complicated, because they are constantly changing and developing. Adam Lanza may have been a totally different human being in 2005 from the one he was in 2012. Or he may have been the same person, displaying symptoms the experts did not then acknowledge or understand.
Recently, I’ve been thinking about Daniel and Meggan, and wondering what happened to them. Had they ended up hurting themselves or others? Had they been able to live productive and satisfying lives?
When I met Daniel, he was a scrawny 10-year-old with tight curly hair. He had a scar on his forehead, where a ceiling had collapsed on him during a fire in a rooming house where his family had stashed, ignored and frequently abused him. Daniel was suffering from post-traumatic shock syndrome and schizophrenia and, after being removed from his family, was staying at a residential treatment center — one of 13 places he lived before turning 18.
In contrast, Meggan came from an upper-middle-class background, but she, too, suffered through a series of placements. Her parents shuttled her from therapists to hospitals to special schools, seeking help for and insight into her unpredictable behavior. Exhausted and nearly bankrupt, they eventually gave up, voluntarily relinquishing custody of their daughter to the state. This was then a frequent choice for many desperate families.
A reversal of approach has taken place since Daniel’s and Meggan’s therapeutic gantlet, when nearly three-fourths of all mental health dollars for adolescents were devoted to institutional care. Today, mental health professionals are more focused on keeping families together. In some states, intervention teams are available to respond to children in crisis, at home or at school. Drop-in centers have been established to provide families a therapeutic timeout. But these and other Band-Aid approaches are employed sporadically, and often, according to the United States Government Accountability Office, they are administered by undertrained personnel. The system, to put it bluntly, is a mess.
Funding, obviously, is part of the problem. Fifteen million children in the United States now suffer from some mental health disorder, and the Centers for Disease Control and Prevention reports that their numbers have been rising since at least the mid-1990s. But at the same time, spending on mental health treatment as a share of overall health spending declined from more than 9 percent in the mid-1980s to 7.4 percent in 2004, where it remained through recent years.
Resources aren’t the only problem. Psychologists and psychiatrists are still befuddled by basic challenges, beginning with diagnoses, which, for children, can change as they develop. In the 1990s, Meggan was told she was bipolar, then, 10 years later, that she was a high-functioning autistic and, more recently, according to her mother, a borderline personality. She has given up listening to doctors. “I am myself,” she insists, “my own unique flavor of mental health — ‘Meggan’s Syndrome’ — which is pretty awesome!”
After diagnoses, there’s the problem of medication. Certainly the advent of anti-psychotic medications has helped improve the treatment of the mentally ill, but dosages are still largely based on trial and error. Many of these drugs lack a Food and Drug Administration recommendation for children and adolescents — but that doesn’t mean they aren’t given to them. Meggan and Daniel were both prescribed a cocktail of drugs as children, one of the first being the mood stabilizer Lithium. According to a 2012 study in JAMA Psychiatry, the rate of antipsychotic drugs administered to children between 1993 and 2009 — Abilify, Geodon, Seroquel and others — has increased by a factor of nearly eight (for adults, the rate has only doubled). And, according to the G.A.O., foster children receive these medications up to four times more often than kids in the general population.
Studies have demonstrated that talk therapy or talk therapy combined with medication is more effective than meds alone. But there aren’t enough qualified psychiatrists and psychologists to provide that therapy. Today there are around 7,400 child psychiatrists practicing in the United States (roughly one for every 2,000 patients), compared with 4,600 in 1992. By 2020 there will be around a thousand more, though the American Academy of Child and Adolescent Psychiatry estimates that we will need double the current number by then.
I hadn’t communicated with Meggan since the book was published, so this summer I set up an appointment to talk. Now 38, she is the same vivacious and manic Meggan, laughing, crying and contradicting herself. We talked in a conference room at the medical center where she now works — and where she was once an inpatient.
She’s had an “up and down” life, she told me. On the plus side, she’s a college graduate with a degree in biology and three children. But she feels lonely and isolated. She is going through a divorce, and about three years ago was cited for marijuana possession, the use of which prompted her parents to seek custody of her children. She stopped cold turkey, and the suit was settled privately. She often works seven days a week, but her parents continue to supplement her income.
Daniel and I had kept in touch sporadically. I knew he had been in jail a couple of times for petty crimes and that he had relocated to another state. He married and legally changed his first and last names, thinking that a new name would help him escape the trauma of his past. But painful memories plague him. Now 37, he weighs 267 pounds, at 5-foot-3, and is suffering from congestive heart failure.
Meggan and Daniel have demonstrated their ability to survive and their will to persevere. After much effort, Daniel taught himself to read on a basic level, by studying websites and sounding out and memorizing words. And he never relented in his efforts to find work. He is now employed as a part-time cashier at a Ponderosa Steakhouse, his first paying job. He and his wife continue to rely on disability payments, however.
Meggan has had setbacks and made harmful choices, but she is now a responsible mother and a breadwinner.
Just think what they could have achieved, had they not been held captive by a dysfunctional system. We must work harder to understand mental illness and to provide the resources that social-service professionals need, to ensure that lost children like Meggan and Daniel can achieve their full potential.