Severe autistics languish weeks or longer in hospitals

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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.

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 situatiion.

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.

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.