Teenagers and young adults with severe autism are spending weeks or even months in emergency rooms and acute-care hospitals because of a lack of community treatment programs able to deal with their outbursts, according to interviews with parents, advocates and physicians from Maine to California as well as federal and state data.
These young people — who may shout for hours, bang their heads on walls or lash out violently at home — are taken to the hospital after community social services and programs fall short and families call 911 for help. Once there, they sometimes are sedated or restrained for long periods as they wait for beds in specialized facilities or return home once families recover from the crisis or find additional support.
While the data on extended hospital stays are limited, national numbers on people with an autism diagnosis who were seen in hospital ERs nearly doubled over five years to 159,517 in 2014, according to the latest figures from the federal Agency for Healthcare Research and Quality. The total admitted for a behavioral or medical issues also nearly doubled, to 26,811 in 2014.
That same year, California recorded acute-care hospital stays of at least a month for 60 patients with an autism diagnosis. The longest were 211 and 333 days.
"As more children with autism are identified, and as the population is growing larger and older, we see a lot more mental-health needs in children and adolescents with autism," explained Aaron Nayfack, a developmental pediatrician at Sutter Health's Palo Alto Medical Foundation in California who has researched the rise in lengthy hospitalizations. "And we have nowhere near the resources in most communities to take care of these children in home settings."
Sixteen-year-old Ben Cohen spent 304 days in the ER of Erie County Medical Center in Buffalo. His room was retrofitted so the staff could view him through a windowpane and pass a tray of food through a slot in a locked door. His mother, who felt it wasn't safe to take him home, worried that staff "were all afraid of him . . . [and] not trained on his type of aggressive behaviors."
The problem parallels the issue known as psychiatric boarding, which has been an increasing concern in recent years for a range of mental illnesses. Both trace to the challenges of deinstitutionalization, the national movement that aimed to close large public facilities and provide care through community settings. But the resources to support that fell short long ago, exacerbated by the 2008 recession, when local, state and federal budget reductions forced sharp cuts in developmental and mental-health services.
The hospital "is the incredibly wrong place for these individuals to go in the beginning," said psychiatrist Michael Cummings, associate medical director at the Erie County facility. "It's a balancing act of trying to do the . . . least harm in a setting that is not meant for this situation."
Autism is a neurodevelopmental disorder typically diagnosed at a young age and characterized by impaired communication, difficulty with social interaction and repetitive behaviors that fall along a spectrum of mild to severe.
Adolescents and young adults with severe autism may still have the mental age of a child, and short-term care to stabilize those in crisis who are nonverbal or combative is practically nonexistent. Longer-term care can be almost as hard to find. It must be highly specialized, usually involving intensive behavioral therapy; someone with severe autism gets little benefit from traditional psychiatric services.
In New Hampshire this summer, 22-year-old Alex Sanok spent a month in Exeter Hospital after he became violent at home, breaking windows and hurling objects at walls. His mother called 911, and paramedics spent half an hour trying to calm him before restraining him.
At the hospital, his wrists and ankles were strapped to an ER bed for the first week, and he spent several more weeks in a private room before he could be transferred, according to his mother, Ann Sanok. State agencies that handle developmental disabilities and mental health offered little help, she said.
As the days passed, she and her husband wondered: "What if [Alex] escalates again, what are we doing to do? We were getting no answers. Everyone seemed to kick the can down the road."
Exeter Hospital said in a statement that its policy is not to use restraints unless there is an "imminent threat to patient or staff safety" and that any use is reviewed hourly. Sanok was moved in June to a special-needs residential school in Massachusetts, where his mother said he is doing well.
The federal government does no routine tracking of how autism is treated in ERs, but many experts say the problem of lengthy and inappropriate stays is nationwide and growing. Kaiser Health News identified some of the more extreme cases through interviews with autism and disability advocates, physicians and families in New Hampshire, New York, California and six other states — Maine, Connecticut, Rhode Island, Maryland, Michigan and Arizona.
Nancy Pineles, a managing attorney with the nonprofit group Disability Rights Maryland, said a group home took one young adult to a Baltimore ER earlier this year after he hit a staff member. And that's where he remained for several weeks before the hospital moved him to a room in its hospice wing, she said — not because he was dying, but because there was nowhere else for him to go.
Such cases have been "on the increase," Pineles said. "People with autism and more intense behavioral needs are just being frozen out."
In Connecticut, the head of the state's Office of the Child Advocate told lawmakers during a hearing on disability issues in May that the problem had reached a "crisis" level.
Private insurance data underscore the concerns. In a study published in February in the Journal of Autism and Developmental Disorders, researchers from Pennsylvania State University found that young people ages 12 to 21 with autism are four times likelier to go to the emergency room than peers without autism. They also are 3½ times more likely to be admitted to a hospital floor — at which point they stay in the hospital nearly 30 percent longer.
The analysis, based on a sample of 87,000 insurance claims, also showed that older adolescents with autism are in the ER more than their younger counterparts. The percentage of their visits for a mental-health crisis almost doubled from 2005 to 2013.
Tyler Stolz, a 26-year-old woman with autism and a seizure disorder, was stabilized after a few weeks in a Sacramento hospital. Yet she remained there for 10 months, according to Disability Rights California, an advocacy group that described her case in its 2015 annual report.
Ultimately, Mercy San Juan Medical Center went to court to demand that Stolz's public guardian move her. Although her conditions no longer required her hospitalization, they still "represent dangers to defendant and possibly to others if she were discharged to the community," the facility contended. "There is no safe place for the client to go."
The advocacy nonprofit helped place Stolz at a Northern California center that offered intensive behavioral therapy, recounted Katie Hornberger, the nonprofit's director of clients' rights. The medical center did not respond to a request for comment, but two years after an investigator found Stolz in a bed covered by a mesh tent, the case remains vivid in Hornberger's mind. "I don't believe we put people in cages," she said.
Across the country in Buffalo, Mary Cohen struggled to care for her teenage son. Ben's 6-foot-1, 240-pound body dwarfed her petite frame.
She began locking herself in a basement room to escape his outbursts, while still monitoring him via cameras she'd installed throughout the house to make sure he was safe. As the lock-ins became more frequent, she realized, "I can't keep going like this." She found a nearby group home, covered by his disability and Medicaid payments, that could accommodate Ben.
On Aug. 1, 2016, it all imploded. Medication changes and an ear infection triggered a rage, Cohen said, and Ben hurt one of the staff members. Someone called 911, he was taken to the psychiatric emergency room at Erie County Medical Center, and a waiting room there is where he lived until early this summer.
Though a 304-day stay is a record there, cases like this have surged at the hospital, said Cummings, its executive director of behavioral health, who worked on Ben's case. They spurred him to launch a grant-funded home-visit program aimed at keeping families with autistic children from reaching a breaking point. He and his clinical partner have counseled nearly 400 families to help manage their youngsters' medications and find services, and their ER visits have dropped by nearly 50 percent, he said.
A bed finally opened up for Ben at Baltimore's Kennedy Krieger Institute — a private, highly regarded facility that offers intensive therapy, psychiatry and family coaching. Cohen held out for a placement there, hoping the staff could turn Ben's behavior around. The teen and his mother made the 360-mile trip in June by ambulance and plane.
"I want to do the right thing for him," Cohen said. "Because one day I'm not going to be there for him."
Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.