Tricia Baker knows there aren’t any easy answers to the question of how best to help children with mental illness. Her son, Kenny, the kid with the kind heart, the star swimmer and gifted student, took his life on May 19, 2009 on the railroad tracks near his home in Plainsboro, New Jersey.
He was just 19, three weeks shy of high school graduation, but four years into a diagnosis of depression and anxiety that left him feeling alone, despite proper treatment and the love of a supportive family. Kenny was so ashamed of his diagnosis, he hid it from friends, telling them he had mononucleosis to explain why he was hospitalized and lost time from school.
Some four million American children and teens have a serious mental disorder — and the problem of how to help them comes up on instant replay following national tragedies like the Sandy Hook shootings. Earlier this week, a Minnesota teenager accused of plotting to murder his family and blow up his high school showed just how hard it is to help.
John LaDue, 17, told police he wasn't bullied and didn't have problems at home. "I think I’m just really mentally ill," he said. "And no one’s noticed, and I’ve been trying to hide it.”
Hiding can complicate the problem. As Kenny's condition deteriorated, it was clear to friends that something beside mono was going on. Some friends ostracized him. Some educators simply thought he got lazy.
In her heart, Baker believes it was the isolation and humiliation of having a disease that separated him from his peers that was one of the factors that caused his suicide. “I do believe he would be alive today if some people would have been kinder, more compassionate, but I don’t blame anyone,” says Tricia, who along with her husband, Kurt, and daughter Katelyn, started a non-profit organization called Attitudes in Reverse focused on education and suicide prevention.
Indeed, the teen years can be difficult to navigate, even without the specter of mental illness lurking in the background. Like adults with mental illness, teens also suffer from social stigma, leading to shame, secrecy and social isolation. While it’s clear that a person with mental illness is more likely to do harm to themselves than others, that shame can have chilling consequences. John LaDue told police he “wanted to be taken-out” in a suicide-by-cop scenario to show he “wasn’t a wimp.”
The National Alliance on Mental Illness (NAMI) estimates that in any given year, only 20 percent of the estimated four million children with mental disorders are identified and receive mental health services.
For teens, part of the problem is that “adolescents fundamentally want to fit in, and anything that marks them as different is a problem,” says child and adolescent psychiatrist Dr. Niranjan Karnik of Rush University Medical Center in Chicago. Added to that issue is that adolescents may not even know what “feeling bad” really means since they have less life experience, and shorter reference points to compare the so-called good days versus bad days.
“It’s very common for me to meet adolescents who have been depressed for some time but they don't have a label for it,” says Karnik. “It’s just how they have felt and they thought it was normal.”
When some suspected something may be wrong, they didn’t want to share out of fear. Karnik has had several patients who have been depressed for years. Their families thought they were just going through the angst of being a teenager, and were blind to what he calls "the subtle crawl of mental illness.”
A study from Case Western Reserve University Mandel School of Applied Social Sciences looked at adolescents between the ages of 12 and 17 who were diagnosed with a mental illness and were taking medications. They found that at least 90 percent of the study's participants said they experienced some form of stigma, which led to shame, keeping secrets and limiting social interaction.
Some parents and schools helped by boosting confidence through acceptance. Others, unwittingly, reinforced feelings of isolation.
“When a kid comes down with leukemia in 8th grade and goes for treatment, all of his or her peers have empathy and send cards and some may even shave their heads, but when a child goes in for a psychiatric condition, it’s ‘wow’ that’s different, and there’s not that empathy,” says Dr. Felipe Amunategui, assistant professor and child and adolescent psychologist at University Hospitals Case Medical Center in Cleveland.
There are other issues, too. Although it’s been more than five years since a law established equality between mental health care and other medical treatment, and almost a year since a November 2013 ruling requiring insurers to charge similar co-payments for mental health treatment as they would for physical problems, there is still a long way to go.
“We’ve made a lot of progress in 20 years in fighting stigma, so it’s a matter of whether you see the glass half full or half empty,” says Dr. Gregory K. Fritz, president-elect of the American Academy of Child and Adolescent Psychiatry. He compares it to the early civil rights movement. “There may be rules but it takes a while for those rules to become the practice of the land.”
This past week, Fritz was trying to hospitalize a child who was a serious suicide risk and had to wait hours for insurance approval. “This child was just as likely to die as a child with out-of-control diabetes, yet the child with diabetes would get admitted immediately," he says. "This is just one tangible example of things that happen a million times a day, and it’s all supported by stigma.”
It’s young people themselves who may hold the key to help further destigmatize mental illness. At least that’s what Megan Rogers, a 22-year-old recent graduate of North Carolina State University, believes. She’s part of NAMI on Campus at her university, which provides mental health awareness, education, advocacy and support.
Rogers was diagnosed with depression at age 15, and knows what it’s like to lose friends and be called crazy. “Kids today know more about mental health issues, and the more we educate people, especially my generation, the better off we are going to be,” she says.
Barbara Sorensen, president of NAMI Southeastern in Connecticut, couldn’t agree more. “I see some kids who have been ostracized, and when you’re a teenager your peers are so important, but things are changing, slowly, but they are changing,” says Sorensen, whose son Michael was diagnosed with schizophrenia at age 20, nine years ago. This year, an essay contest run by her chapter along with a local high school got nearly 150 entries.
“With the Sandy Hook tragedy everything came out into the open about mental illness, and these kids, these kids want to change things and try to make it better," she says.
The Bakers estimate they reached more than 14,000 middle school through college students with their Coming Up for AIR presentation, which lets the young know that no one chooses to have a mental illness, and it’s OK to seek help. They also talk about Kenny.
Every April 16 on Kenny’s birthday, the Bakers, along with some friends, go to a local P.F. Chang’s restaurant. It was Kenny's favorite place to eat. A few years ago their waiter wondered by the guest of honor wasn’t there. After learning about Kenny, the waiter told the Bakers of his own struggle with depression.
“He’s one of our Facebook followers now,” says Tricia. “You just never know who you can help and when you can help them. But the first step is to not be afraid of the conversation.”