A Place of Best Resort for Families
David and Emily Tate had run out of options.
Since the birth of their daughter, Joy, 16 years ago, the Tates had struggled to manage her sudden, intense outbursts that grew into a tsunami of fury and frustration. Joy, who is on the autism spectrum, didn’t always have the ability to express her needs and understand the tumult of emotions that coursed through her young body. Despite the best efforts of her parents and a cadre of teachers, therapists, and psychiatrists (Emily stopped counting professionals at 15), Joy’s emotions daily whirled her into a destructive force that no one could contain or control. Most local psychiatrists couldn’t or wouldn’t help. The family would sit in local emergency rooms when Joy was in the throes of rage only to be sent home because the psychiatric unit wouldn’t take teens with autism. Probably about one-third of people with autism demonstrate severe behavior issues like Joy’s. Behavioral meltdowns can become so extreme in this subgroup that one in three are hospitalized for psychiatric reasons before their 18th birthdays.
Emily and David placed their hopes in an Ohio residential treatment facility for teens on the spectrum, a three-hour drive from their home east of Pittsburgh.
“It was one of the hardest things we ever had to do,” Emily says.
While Joy was there, her behavior deteriorated even further. One week into her stay, a late-night phone call from the facility informed the Tates that Joy had gotten so violent they had no choice but to hospitalize her in a psychiatric unit. The Tates had heard of UPMC’s Merck Inpatient Unit for people with neurodevelopmental disorders, but their insurance would never approve a stay—until now. At the time, Joy’s parents thought this was the worst thing that could happen to their daughter.
But what started as an awful turn of events became a glimmer of hope. When Emily and David arrived at Pitt to visit Joy, they met with psychiatrist Joseph Pierri. From that moment, everything changed.
“If we wouldn’t have met Dr. Pierri, and [Joy] wouldn’t have made it to the Merck center, I don’t think we would be where we’re at today,” David says.
A bespectacled, soft-spoken University of Pittsburgh assistant professor of psychiatry with a salt-and-pepper beard, Pierri is one of the many Merck providers who becomes the calm in the storm for families of children with autism whose behavior has become too difficult to safely manage at home. Pierri is medical director of the Merck Inpatient Unit, an acute care psychiatric facility. His team’s primary goals are to adjust medications, identify potential triggers of behavioral problems, and improve patient and family safety after discharge.
“Coming into the inpatient unit is not like a surgical approach. It’s not like you’ll come in, you’re here two weeks, four weeks, six weeks, eight weeks, we’ll fix it all, [and] you’ll go back out. So what’s really critical is the idea that it takes a village,” says Martin Lubetsky (Fel ’86), Pitt professor of psychiatry and clinical service chief of child and adolescent psychiatry, as well as of the Center for Autism and Developmental Disorders at Western Psychiatric Institute and Clinic.
When the Merck unit opened its doors in 1974, it was the only specialized inpatient unit for people with autism in the United States. More than 40 years later, only a handful of such units exist across the country, almost all of them concentrated on the Eastern Seaboard. Part of what continues to make Pitt’s unit unique is its commitment to helping affected individuals across the life span.
“It’s not just through childhood, and then falling off the cliff. We treat children, teenagers, and adults,” says Lubetsky.
Whatever their age, the individuals admitted to the Merck Inpatient Unit are at a crisis point. Many have symptoms of serious psychiatric disorders such as major depression, bipolar disorder, and schizophrenia, in addition to autism. Others are admitted after run-ins with police. Nearly all are physically aggressive, both to caregivers and to themselves. Headbanging, scratching, skin picking, punching, kicking, and headbutting often occur multiple times each day at home, and the behaviors don’t stop on the unit. For a long time, Pierri says, staff on the unit had the highest rates of workplace injuries at Western Psychiatric Institute and Clinic. The addition of specially trained staff to observe patients, learn their unique quirks, and defuse outbursts before they happen has helped injury rates decrease. The behavioral therapists also teach their skills to parents to be used at home and school.
The challenging behaviors exhibited by Merck inpatients can cause serious burnout among staff, says social worker Tara Krelic. Yet people who work on the unit get a break as soon as they clock out. The parents of these children don’t, and the strain can cause serious problems for families, she explains.
“The people who bear the burden are caregivers. The people who are on the receiving end of the aggression are often family members,” Krelic says.
For Jessica West, whose 14-year-old son (we’ll call him Ronald) was treated at Merck last year, the coaching has been nothing short of a godsend.
“I don’t know where we would have been without that time and without the guidance and support of the medical team,” West says.
Her son’s violent behavior followed episodes of catatonia, during which her son would freeze and become unresponsive for upward of an hour. In January 2017, West’s son froze while trying to cross a busy intersection near their home in a Pittsburgh suburb. At that moment, West knew her son needed more help than she could provide.
“Because you can’t explain to somebody who’s in a car that he has autism. You can’t explain to the onlookers who are seeing you out in the middle of the street and you’re not moving, why you’re not. It just looks like you’re just being a jerk. It doesn’t look like there’s something that’s going wrong with my son,” West says.
“My husband and I looked at the situation from a safety perspective. And I really felt like there was nothing more that we could do to keep him safe.”
Ronald’s verbal abilities are pretty good. Because his language is better than some on the spectrum, West says that it’s easy to think his problems aren’t as severe as those of nonverbal children.
That’s not how things work, according to Lubetsky. In 2017, Pitt’s Carla Mazefsky and colleagues showed that verbal children hospitalized on the Merck Inpatient Unit had just as many outbursts and instances of aggressive behavior and self-injury as minimally verbal children. (Learn more about Mazefsky’s work in the story below.)
On admission, the teams at the Merck Inpatient Unit provide each inpatient with a targeted behavioral plan that focuses on the nexus of issues that led to the hospitalization. As staff track how each patient adjusts to life on the unit, they can learn what might set off a person and how best to de-escalate the situation.
Joy spent several weeks at Merck. When she was discharged, her behavioral issues weren’t gone. But her time as an inpatient gave her a start on more effective medication, as well as a chance to learn new strategies to keep her frustration from boiling over.
And this spring, Joy had the chance to compete in a beauty pageant for teens with special needs. She dressed in a teal gown, her light brown curls framing her face. For once, Joy got to act like any other teenage girl. Her mother says the opportunity was made possible by the new start offered by her stay at the Merck Inpatient Unit.
A Search for Warning Signs
BY CARRIE ARNOLD
When inviting colleagues and visitors to the inpatient wing where she leads a research study, psychologist Carla Mazefsky sends them a long list of dos and don’ts. Avoid large earrings, scarves, and anything else that can be grabbed by an excited or distressed child. Wear trousers and comfortable shoes “in case you have to get out of the way quickly.”
Mazefsky specializes in kids on the far end of the autism spectrum who are prone to aggression. The Merck Inpatient Unit (which has treatment wings for adults, teens, and children) was designed for individuals in crisis who can’t be physically safe in their day-to-day lives. Doing research to help them, as Mazefsky has pursued since she arrived at the University of Pittsburgh in 2006, seems like it would be nearly impossible. Most people would be deterred, or at least intimidated. After spending years working with this population, however, Mazefsky has gained tremendous insight into what drives the aggression and outbursts most likely to cause harm and lead to hospitalization.
Popular accounts of autism often portray people with the condition as emotionless automatons. Yet more than a decade of work at Pitt has convinced Mazefsky that emotional dysregulation (the inability to control emotional responses) plays a key role in autism.
What results are angry outbursts and meltdowns, as well as aggression toward self and others that can drive families to their breaking point. If she’s right that these intense emotions are central to autism, her work won’t just change how doctors and other providers think about autism, but also will help them develop strategies to prevent meltdowns before they occur.
Mazefsky is also a codirector of the Center for Excellence in Autism Research, which was founded by codirector Nancy Minshew, who holds Pitt’s Endowed Chair in Autism Research and is an MD professor of psychiatry and neurology.
Sitting in a small alcove in the cafeteria of the Western Psychiatric Institute and Clinic, Mazefsky outlines the difficulties and idiosyncrasies that form the core of how many researchers think about autism: language delays, difficulty making eye contact, trouble understanding what another person might be thinking and feeling, repetitive motions such as hand flapping or rocking to self soothe. These traits have been codified into the diagnostic criteria for autism.
As she leans back in her chair, Mazefsky notes that these differences are very real. The problem, she says, is that the focus on this particular set of challenges overlooks the profound emotional dysregulation faced by many with autism.
Mazefsky has found that many with autism are overwhelmed by emotions they can neither identify nor control.
Most clinical researchers spend their time trying to improve how children on the spectrum interact with the world around them.
“The early interventions are focused on increasing communication, cognitive skills, social interaction—which all make sense. But it’s very hard to even make gains in those areas if you’re really dysregulated,” Mazefsky says.
It’s as if people on the spectrum are being taught to make cakes; and if their skills improve, their teachers say, they’ll add more layers. Maybe even elaborate fillings and icings. Yet instead of an oven that works at 375 degrees Fahrenheit, those with autism must contend with one that shoots up to 600 degrees at random. The result is a cascade of effects that reverberate throughout the life span. And someone is bound to get burned if you don’t regulate the temperature.
Parents use another metaphor when describing this phenomenon: Their kids’ emotions rev up from zero to 100 in the blink of an eye. One second, everything is fine; the next, chaos.
“It’s a problem when they’re little. And then, as they’re older and their behaviors are more difficult to manage, and it’s less acceptable to have a tantrum, it almost creates more of a divide between even the verbal kids with ASD and their peers when they’re so dysregulated emotionally,” Mazefsky says.
Even Mazefsky can be taken aback by how quickly things can unravel. Last year, she administered a diagnostic test to a nonverbal teenage girl being discharged from the unit. At first, everything seemed to be going well, Mazefsky recalls. The girl appeared to be engaged and even enjoying the activities. Then, seemingly with no warning, she headbutted Mazefsky, leaving the researcher bruised and shaken, but otherwise okay.
“And I honestly had no idea it was coming. Despite my knowledge of her [long history of headbutting], knowing she was still doing it, and all of my years and years of training. And her parents were in the room, and they had no clear indicator that it was coming either,” she says.
“If I had had one minute of warning, how different that situation could have been.”
Looking back, Mazefsky realized that she shouldn’t have let her guard down. Testing was intense and required social interaction, which many with autism find stressful; and stress, she’s found, can often set the scene for an outburst. But the experience left Mazefsky with more than just a goose egg. She realized that some sort of warning that her young charge was getting overwhelmed could have helped both of them through the incident unscathed.
“Once you’re that aroused, it’s really hard to back down. But we do think there’s stuff going on beforehand that we’re just not picking up on,” she says.
Mazefsky began to wonder whether there was a way to capture the internal signs that someone was beginning to get overwhelmed.
Identifying these precedents wouldn’t be easy, however. For one, people with autism don’t always have the ability to identify, in the moment, what they’re feeling. The other major barrier is the heterogeneity of people with autism—even among the small subset treated at the Merck Inpatient Unit. IQs can range from 30 to greater than 140. Some kids are verbal, others not. And patients range from 4-year-olds to full-grown adults. Since little had been done on emotional dysregulation in autism, Mazefsky would have to adapt tests designed for other disorders and get them to work for everyone in her study.
Laying the groundwork took years. Mazefsky drew from her experiences working with this population. And she partnered with other experts through the Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC), a multisite study of severely affected youth with autism who are admitted to specialized psychiatric units, including the one at Merck.
Mazefsky and her collaborators—Matthew Siegel at Maine Medical Center and Matthew Goodwin at Northeastern University—completed a pilot study to see if they could predict aggression occurrence based on preceding biological signals. To do this, they had to determine whether participants would be able to tolerate wearing Fitbit-like devices to measure heart rate, electrodermal activity (like changes in body temperature and sweat), and movement.
Mazefsky and her ADDIRC colleagues intend to use machine learning to see if they can tease out any factors that can predict these events.
“It’s almost never out of the blue, but it does appear to be out of the blue,” she says.
Preliminary results from the pilot study suggest that they’re on the right track. The researchers reported at the 2017 meeting of the American Academy of Child and Adolescent Psychiatry that the physiologic data could predict aggression one minute before it occurs with 71 to 84 percent accuracy. Mazefsky has begun a larger trial at UPMC’s Merck Inpatient Unit and hospitals in Rhode Island and Maine to more definitively test this idea and improve accuracy.
Her ultimate dream is to create an app for a Fitbit or other smartwatch that can provide something like a green-, yellow-, and red-light system for potential problem behaviors.
In the meantime, Mazefsky is working with Pitt clinicians treating outpatients with autism to implement a new therapy. It’s called Emotion Awareness and Skills Enhancement Program (EASE). EASE starts by teaching awareness of emotions as a foundational skill that promotes the ability to manage intense feelings. Then patients build tolerance for distress through different strategies.
Although it’s still too soon to say whether EASE is effective, Mazefsky remains optimistic.
“Parents live with this every single day. I really feel for them,” Mazefsky says.
“The families are in crisis, but they’re also excited to work towards doing something to help the problem and get their kids represented.”
Note: To protect privacy, we have changed names of patients and families in these stories.