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UMBC study among efforts to increase awareness of mental illness

Young adults such as Mall in Columbia shooter often slip through the cracks, experts say

By Jean Marbella, The Baltimore Sun

8:23 PM EDT, March 21, 2014

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This spring, a group of college students will go about their usual campus routines, but with a voice only they can hear calling them names and making other distracting, disturbing sounds.

In their case, the voice will come from a recording playing through earbuds as part of a research study. But researchers say the exercise could ultimately help increase awareness and break down the stigma that prevents those who suffer from auditory hallucinations and other symptoms of mental illness from getting the help they need.

"Many of the folks who need help get lost somehow," said Jason Schiffman, an associate professor of psychology at the University of Maryland, Baltimore County who is heading the study. "There are so many kids and young adults who slip through the cracks."

Among those, apparently, was Darion Marcus Aguilar, the 19-year-old who fatally shot two skate shop employees at The Mall in Columbia in January before turning his gun on himself. Last week, Howard County police Chief William J. McMahon said Aguilar had told a doctor that he was hearing voices but did not follow through on the physician's recommendation that he see a mental health professional.

It is this kind of scenario, in which a troubled person for whatever reason doesn't get the help he needs, that prompted Maryland to fund a new $1.2 million initiative last year. Called the Center for Excellence on Early Intervention for Serious Mental Illness, it was created in the aftermath of a number of mass shootings in which the perpetrator was found to have suffered from psychiatric problems.

McMahon speculated that the stigma surrounding mental illness contributed to Aguilar's reluctance to speak to his mother about his problems or to seek treatment.

"When kids are suffering from mental health issues, there seems to be a reluctance," McMahon said. "There's a stigma attached. … I think that's the more critical question for society in general."

Schiffman has long been interested in early intervention and de-stigmatization programs for those suffering mental health problems, but more recently, his work is benefiting from a new focus on the role such illnesses may have played in some shootings.

Last year, Maryland enacted one of the nation's strictest gun laws after the Sandy Hook Elementary School shootings in Newtown, Conn., but also opted to focus on mental health issues by creating the center for early intervention.

The center brings together existing clinics and labs at the University of Maryland School of Medicine, the university's Medical Center and UMBC. The programs are geared toward treating and researching people who have suffered psychosis — some kind of break with reality, such as delusions or hallucinations. Psychosis can be a symptom of severe mental illnesses that include schizophrenia, bipolar disorder and severe depression.

At the university medical school, for example, the First Episode Clinic serves those who have recently experienced psychotic episodes. And at UMBC, Schiffman heads a number of research and clinical programs aimed at young people. Mental disorders often first manifest themselves in the patient's youth.

Advocates say it's critical to focus on people in their late teens and early 20s — what mental health professionals call the transition-age youths. It's a time of life changes, which can exacerbate existing mental disorders, experts say, and also a time when they are at greater risk of not receiving the help they need.

"They're shifting from being kids under the protection of parents to being adults," Schiffman said.

"At 18, the school system changes dramatically. Before, you're in school and there are people always around you. You might have seven teachers who see you daily. Then you graduate, and that changes."

Ann Geddes, who directs public policy for the Maryland Coalition of Families for Children's Mental Health and specializes in transition-age youth, agrees.

"At 18, they're legally autonomous," she said. "They're no longer connected to school-based mental health services. By the time they're 18, you've lost them."

At UMBC, Schiffman's students plan to launch a study this spring to help address issues in dealing with mental illness among members of this age group. The study has two components: listening to the tape that simulates the voices that those with psychosis hear while trying to complete tasks; and watching a video in which UMBC students talk about their personal experiences with mental illness.

Researchers will then study how the 200 subjects, who will be recruited from psychology classes at UMBC, respond to the experience. Does listening to the tape increase their empathy for those who have auditory hallucinations, for example, and does the video help them realize that having a mental illness doesn't prevent people from functioning normally in other aspects of their lives?

Danielle Denenny, a doctoral candidate at UMBC leading the study, said the goal is to see if the tape and video can help break down the stigma that surrounds mental health.

"We want to show portraits of young people who really look a lot like their peers," Denenny said of the video. "It counters the pervasive message that we get, that anyone in counseling for mental illness is severely struggling, weak or unstable."

In the video, students talk about a range of disorders that they have experience with — a veteran talks about post-traumatic stress disorder, for example, while another speaker discusses how her family dealt with her grandfather's suicide.

"I was nervous telling anyone because there is such a bad stigma about mental illness and the word 'schizo,' " one student, Stephanie Kaczmarek, 20, says in the video. "I was scared to tell my boyfriend because I was afraid it would put a huge rock in our relationship that we couldn't get around. But he's definitely been there for me and not judgmental at all."

Kaczmarek said in an interview that she was diagnosed with schizoaffective disorder in January 2012, after years in which she had experienced delusions — such as hearing footsteps, feeling bugs crawling on her and having thoughts planted in her head, often about death or demons, that sometimes led to panic attacks and feelings of paranoia. After resisting medication for fear that it would make her a different person, she started a drug regimen last year that she considers "nothing short of a miracle."

"I actually used to be a wonderful student in school before the symptoms started to get worse and worse. I would study and nothing made sense, nothing could be grasped and the information just didn't sink in," she said. "Now that I'm on medication, my grades and comprehension have drastically improved, and I made the dean's list."

She decided to tell her story to counter the negative image of persons with mental illness.

"Whenever there's a national tragedy, like a school shooting, you always read things online, like 'We should ship all the crazies away. … We should have them all euthanized,' " she says on the video. "It is scary for me to know there are people out there who think like that."

The study is based on a training program, Hearing Voices That Are Distressing, created by psychologist Patricia Deegan and used most commonly on health professionals, educators, police and others who may come in contact with people with mental illnesses. But Denenny said she wanted to see if such a program could have an impact on a college campus.

"It's the right age group, right on the cusp of the age of risk," Denenny said. "And it's also that period when friends have more influence on you, when having friends is important."

Friends can persuade a person suffering from mental illness to seek treatment, Denenny said.

Denenny and Eryn Bentley, a master's candidate also working on the study, said they hope that if the tape and video are found to be helpful, some form of it might be used more broadly. The video in particular, Bentley said, would not be out of place at freshman orientation, where new students are given material on subjects such as guarding against sexual abuse.

The researchers said they were surprised that they received more responses than they could use when they put up fliers and online ads looking for students to tell their stories for the video. Some were motivated by gratitude for the treatment they'd received, Denenny said, and wanted to encourage others to seek help.

"People who do have mental illnesses are scared of being discriminated against," Bentley said. "And you see the immense toll this stigma can take."

Schiffman said other countries have done better jobs of making mental illness less stigmatized. He points to Australia, for example, where mental health centers for youths resemble YMCAs, places to go not just for counseling and support but also recreation.

"As a society, if we normalize the seeking of help," he said, "people are more likely to seek that help."

jean.marbella@baltsun.com