Posted: Tuesday, May 24, 2016
When he was 14, Christopher Sandy felt no need to hide his diagnosis of attention deficit disorder and bipolar disorder.
Now 30, the Hatboro man encourages Bucks County teens to talk about their struggles as part of a school-based program called Ending the Silence, which is designed to reduce the stigma surrounding mental illness by putting a face on it.
Now 30, the Hatboro man encourages Bucks County teens to talk about their struggles as part of a school-based program called Ending the Silence, which is designed to reduce the stigma surrounding mental illness by putting a face on it.
"I want the kids to realize they are not alone. It's nothing to be ashamed of. It's a disorder of the brain," Sandy said. "People have asthma; you take an inhaler and you're good. For me, it was no different than having a cold."
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| Christopher Sandy speaking at Unami Middle School |
Sandy's attitude is a dramatic departure from previous generations when psychiatric and behavioral disorders were seen as something to be kept secret, mental health experts say. But this new acceptance and greater willingness among young Americans to share personal information publicly has raised concerns among some mental health advocates and parents about possible future implications on job and social prospects in a society where the stigma about mental illness persists.
Approximately 21 percent of children — slightly more than one in five — between 13 and 18 years old will experience a seriously debilitating mental disorder at some point in their lives, according to the National Institute of Mental Health.
And slightly more than 10 percent of American children — just over one in every 10 kids ages 8 to 15 — were diagnosed with a mental disorder within the past year, according to the federal Centers for Disease Control and Prevention. Attention deficit/hyperactivity disorder topped the list, followed by mood disorders, the CDC found.
Two decades ago, only about 10 percent of children under 18 who exhibited behaviors consistent with serious behavioral, emotional or mental disorders were diagnosed and treated, compared with roughly 50 percent today, the National Institutes of Mental Health has determined.
Recent studies suggest a greater understanding and acceptance of psychiatric and behavioral disorders as treatable, chronic medical conditions are the reasons behind the dramatic increase in diagnosis and treatment. That's particularly true among children, for whom early intervention shows the best long-term results.
Warminster resident Emily Plewes, 25, was diagnosed with childhood onset schizophrenia when she was a third-grader. Today, she's a college student studying psychology, holds four part-time jobs, and maintains an active social life.
Like Sandy, she also speaks to school kids about living with a mental illness.
As a child, Plewes says that she was bullied more because of her weight and appearance than her schizophrenia, which she didn't hide then either. The negative reactions she experienced came most frequently from adults, she said, but even those were infrequent.
"I feel like I was blessed in that area. I feel like because I'm open, people are more understanding and, when I do kind of bizarre things sometimes, they don't hold it against me," she added.
Emily's childhood experience was unusual, researchers say. A 2010 Case Western Reserve University study — one of the first looking at youths with psychiatric disorders — found at least 90 percent of participants were stigmatized by their illness, which led to feelings of shame and secrecy that limited social interactions. Many study participants reported the attitudes of parents and school officials made them feel better — or worse — depending on those attitudes.
Change of attitude
That is changing, according to recent studies in which college students who have been diagnosed with a mental illness reporting they experience less stigma on campus than the stigma the general population experiences.
Colleges also say they're seeing an increase in students reporting to counseling centers with anxiety disorders and clinical depression and more serious incidents that require immediate intervention, according to a series last year in the Chronicle of Higher Education.
The Center for Collegiate Mental Health at Penn State University found that more than 100,000 college students at 140 U.S. colleges and universities — about half of those surveyed last year — had sought mental health treatment. The center's 2015 report noted, on average, a roughly 30 percent increase in college students seeking counseling services and a 38 percent increase in students keeping counseling center appointments over the previous five years.
That's a trend Bernice Pescosolido, director of the Indiana Consortium for Mental Health Services Research, has noticed evolving over the last three decades. She said she also has seen a greater willingness among her students at Indiana University to openly discuss their mental illness diagnosis in class, where years ago they waited until afterward to talk with her privately.
While Pescosolido agrees Americans are more knowledgeable about mental illness today, she said there's still a strong reluctance to fully embrace individuals who are mentally ill. Many Americans still consider people who are treated for psychiatric disorders as unpredictable, unstable and dangerous, which can make public disclosure risky, she added.
"Mental illness has become a uniquely American metaphor for evil," Pescosolido said. "That whole line, if someone has diabetes, you wouldn’t tell them to pull themselves up by their bootstraps, that seems to have taken us as far as we go. That hasn't translated into "Yes, it's OK if they marry into my family or work closely with me in a job.' "
Such lingering negative attitudes are why some parents worry about their children going public with a mental illness diagnosis.
"Sometimes you worry if someone, say from a college she is trying to get into, may see (her talking about her diagnosis) and where, I take it as a strength, they may not," said Lynn Plewes, Emily's mom. "There are some things that you don't know, like how a future employer might not take it as 'acceptingly.' My thing is, then they must not want a good person."
When her oldest son landed his first job collecting shopping carts at age 16, Warminster resident Debbie Moritz says she struggled over whether to tell his employer about his childhood-onset schizophrenia.
"What I ultimately did was let him decide and he decided not to tell anybody," said Moritz, executive director of the Bucks County NAMI chapter. "But I worried, what if he had some problems at work and he didn't have the support there."
In the end, her concerns were unfounded, she added. Today her son, who has a different last name, is 34, married, and has a job. Still, she added, he typically doesn't disclose his illness to employers or coworkers, Moritz said.
A growing body of research suggests a greater exposure to people with a mental or behavioral disorder creates greater tolerance and understanding and allows others to see the illness as only one piece of a person's identity.
"You have to think of it as a part of the fabric of their lives," said Pescosolido, who sits on the National Research Council's Committee on the Science of Changing Behavioral Health Social Norms. “The only way to fight stigma is to fight it on all levels all the time.... It’s a little like 'Whack-a-Mole' — if you push it down in one place, it pops up somewhere else.”
Ending the Silence
What people believe about behavioral health and substance abuse is created and reinforced at multiple levels, including the media, community norms and government law and policies, according to a National Academies of Sciences, Engineering and Medicine report released in April. It found a major factor in predicting attitudes toward behavioral or psychiatric disorders is whether an individual has had prior contact with someone with such a disorder.
“Schools are recognizing they must address mental health better in the school setting," said Darcy Gruttadaro, NAMI's national advocacy director. "This is not a taboo subject. This is part of the human condition.”
NAMI is conducting long-term research into the effectiveness of Ending the Silence, Gruttadaro said. A 2011 study on the effectiveness of a similar mental health curriculum for middle school students found those who took the six-week course showed less apprehension about interacting with people with mental illness than students who didn't take the course.
Bucks County schools were among the first in the USA to use Ending the Silence. The Bucks NAMI chapter purchased it from the DuPage, Illinois, NAMI chapter that created it in 2012, Moritz said. The Illinois chapter donated the program to the national chapter in 2014.
The program has been used primarily in the Central Bucks School District, but plans are to expand it to the Centennial and New Hope-Solebury districts next year, Moritz said.
Laurie Pepe, who coordinates the Bucks County Ending the Silence program, said schools are receptive to its message. "It’s growing rapidly, to the point they’re reaching out to us to come in,” she said.
Earlier this year, at the request of a Centennial School District the program was presented to eighth-graders at one of its middle schools after administrators there reported more students exhibiting signs of social anxiety, Pepe said.
'Accepting what I am'
During another presentation, in April at Unami Middle School in the Central Bucks School District, about half the 100 ninth-graders in the audience raised their hands when asked if they, or someone they knew, had a mental illness.
Afterward, the handful of teens who talked to a reporter said students are reluctant to talk about mental struggles with adults but not so much with their peers. They expressed concern that teens in mental distress may hesitate to seek help because they fear people will label them as attention-seekers.
One 14-year-old girl who was interviewed admitted she sometimes feels anxious and awkward at parties. "It's gotten, like, bad,” she said.
But she, like the others interviewed, said she has friends she can text message or call whenever she feels emotionally overwhelmed.
A key component of the Ending the Silence program is its use of young adults with mental illness — like Christopher Sandy and Emily Plewes — as presenters. They show students that a mental health diagnosis doesn't prevent you from leading successful lives.
Former presenter Marissa Gates, who left the program after getting a full-time job, said she found many students weren't used to having someone talk openly about mental health.
After her presentations, the 23-year-old Warminster resident said she frequently had students ask questions and share personal experiences — telling her it was the first time they felt comfortable talking to someone about mental health issues.
After a presentation at her former middle school, Gates said a student told her she knew nothing about mental illness before listening to Gates. “That was something that was pretty big," Gates said.
Growing up, Gates said she wished she had someone to talk to about the way her parents behaved. At age 9, she and her twin sister were removed from their parents' custody and placed with relatives.
It wasn't until after Gates was diagnosed with depression at age 17 that she learned her parents had severe mental illness, including paranoid schizophrenia.
“It was very scary, at first, when I was first diagnosed because I think, for myself, I put a lot of stigma around it," she said. “Mental health was very much swept under the rug in my family. There wasn’t room to really talk about it. There was a lot of shame built around mental health in general.”
When she found the right support after she was diagnosed, Gates said her perception about mental illness changed. In therapy, she felt free to express herself for her first time, and her friends encouraged her not to let depression define her as a person.
After she started openly speaking about her depression, Gates said the only negative response came from family members who worried it would reflect badly on her and them. They've since changed that view, Gates said.
“They’ve seen how much I’ve grown, both in the person that I am and professionally, just based off me sharing my story. I think that has helped them realize it’s OK to share," she said. "Even if I am stigmatized, all that matters is I am accepting what I am.”
Jo Ciavaglia: 215-949-4181; email: jciavaglia@calkins.com; Twitter: @JoCiavaglia
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