Teenagers and young adults with severe autism are spending weeks or even months in emergency rooms and acute care hospitals, sometimes sedated, restrained or confined to mesh-tented beds, a Kaiser Health News investigation shows.

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, according to more than two dozen interviews with parents, advocates and physicians in states from Maine to California.

There, they wait for beds in specialized programs that focus on treating people with autism and other developmental disabilities, or they return home once families recover from the crisis or find additional support.

Sixteen-year-old Ben Cohen spent 304 days in the ER of Erie County Medical Center in Buffalo, N.Y. His room was retrofitted so the staff could view him through a window 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 hospital “is the incredibly wrong place for these individuals to go in the beginning,” said Michael Cummings, the Buffalo facility’s associate medical director and a psychiatrist who worked on Ben’s case. “It’s a balancing act of trying to do the … least harm in a setting that is not meant for this situation.”

Numbers skyrocket

Nationally, the number of people with an autism diagnosis who were seen in hospital ERs nearly doubled from 81,628 in 2009 to 159,517 five years later, according to the latest available data from the federal Agency for Healthcare Research and Quality. The number admitted also soared, from 13,903 in 2009 to 26,811 in 2014.

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 people ages 12 to 21 with autism are four times more likely to go to the emergency room than peers without autism. Once there, they 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 is based on a sample of 87,000 insurance claims.

“You’re looking at an increase in unmet need,” said Nayfack.

Tyler Stolz, a 26-year-old woman with autism and a seizure disorder, was stabilized after a few weeks in a Sacramento, Calif., hospital, yet she remained there 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. The court filing noted that Stolz “previously harmed hospital staff” and that “a security officer is posted to the patient’s room 24/7.”

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, its 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.

Some of the longest hospital stays in the nation, averaging 16.5 days, occur in New York state.

Repeated stays

James Cordone, 11, spent seven weeks in a Buffalo children’s hospital in a tent-like bed, with a hospital receptionist or instrument sterilization tech in his room at all times, his mother said. The difficulty families like hers face is “the dirty little secret no one wants to talk about.”

Debbie Cordone of Cheektowaga, N.Y., was a retired police dispatcher who had raised her own children when she and her husband adopted James as a toddler. Diagnosed with autism at 3, James was a boy with a bright smile who loved to cuddle, she said. At 8½, James began to grow combative. To ward off injury, the Cordones locked up their knives and forks and put away glass picture frames.

But then their son started head-banging. On his ninth birthday, in 2014, James went into a rage, Cordone said. It took four adults to restrain him.

“He was trying to put his head through the window, sweating profusely,” she said.

The family called 911. James was taken to the Women & Children’s Hospital of Buffalo, where he was sedated on and off for 13 days. He went home, but a fit of rage a few months later landed him in the same hospital for seven weeks in March 2015. “We couldn’t ride out the storm any longer,” Cordone said.

During that time, she joined her adult children in a social media campaign to pressure her insurer to pay for intensive behavioral therapy.

The family prevailed, and James went to a center in Baltimore where staff focused on his communication skills and adjusted his medication. He now lives in a group home near the Cordone family. He is “a success story,” Cordone said, albeit a rare one with severe autism.

“This is a crisis,” she said, “and no one is recognizing it.”