Natania Barron and Michael Harrison waited 255 hours in the emergency room before their autistic son Liam, 11, was finally placed in a program that could provide the psychiatric care he needed.
That call came late Monday, Oct. 16, more than a week after their son had a breakdown.
Barron wrote about her experience on a blog post on glittersquid.com, where she is an editor. Liam had what Barron called a “psychotic break,” and the people at this school, Hope Creek Academy in Durham, could not control him. “I will spare details, but the long and short of it was that in his state we feared for his safety and the safety of those around him,” she wrote.
Barron praised the private school for children with special needs, but said the only way she and her husband could get Liam into a program that could help was to go to an emergency room. From Friday, Oct. 6, until Monday, Barron and Harrison took shifts staying with Liam in a room in the emergency ward of UNC Hospitals.
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“Unfortunately, it’s not too uncommon,” state Rep. Graig Meyer, D-District 50, said of what Barron and Harrison faced. Their struggle applies not just to autism but “children and adults with acute mental health needs.” North Carolina does not have enough beds for people who need emergency mental health care and “far too frequently they end up being stuck in the emergency room for days and days,” Meyer said.
“We need to have more money from the state budget to build psychiatric care facilities, because we don’t have enough available,” Meyer said.
Barron and Harrison were given a list of 20 hospitals in North Carolina that help children and others in crisis situations, but “it’s a long waiting list” to get in, Barron said.
She and her husband took time off work, and Barron has heard of other parents of children with autism having to quit work because of the long waiting lists.
Getting a child psychiatric care for a meltdown is crucial, she said.
“There’s only so much you can do with a child who’s having a meltdown at that level,” she said.
‘Not enough crisis beds’
Autism spectrum disorder is a developmental disability “that can cause significant social, communication and behavioral challenges,” according to the Centers for Disease Control and Prevention.
People with autism “may communicate, interact, behave, and learn in ways that are different from most other people,” the CDC website states. There is no cure, but there are medications that can help children and adults with autism function better.
How long would you last in a polyester smock and hospital food and people prodding you and poking you and asking you the same questions over and over again?
The CDC estimates that one in 59 8-year-old school children may be diagnosed with autism. More than 1.5 million children and adults in the United States have autism, and more than 65,000 people in North Carolina have autism, according to the Autism Society of North Carolina.
In her blog post, Barron wrote: “Liam meets the criteria for autism. He’s been obsessed with cars since he was 18 months old, and could spot a Saab across a parking lot before he started calling me Mom.” He struggles socially, but also is highly intelligent. “His IQ is through the roof. His pattern recognition is off the charts,” Barron wrote. Liam is adept at taking things apart and discovering how they work, she wrote.
Other public health agencies agreed with Meyer about the need for more services.
“Behavioral health needs are a growing concern in North Carolina as patients and their families often have no access to community solutions,” Phil Bridges, director of communications for UNC Health Care, wrote in an email. “This can result in large numbers of patients seeking treatment in emergency departments.”
Privacy laws prevented him from discussing specific cases, he said.
A growing state
“There are not enough crisis beds for kids or adults,” with autism or other disorders, said David Laxton, director of communications for the Autism Society of North Carolina. “We’re a growing state,” Laxton said. “You add more people, and it just doesn’t meet the demand.”
The Autism Society does not keep statistics on the number of children who may need emergency services, Laxton said. The society has 20 resource specialists who work with all 100 counties in North Carolina, he said. Those specialists try to connect parents to services closest to their community.
In an April 2017 student count, 20,102 students in North Carolina public schools (ages 3-12th grade) were identified as autistic, according to Department of Public Instruction figures. The 2016 count was 18,813. The number has steadily increased since 2005, when there were 5,766 students identified as autistic.
The state has made some progress, Laxton said. More people understand autism, and hospital workers have better training in how to work with people who have autism. But services are just not available in all cases, meaning that for some families facing crisis situations, “their only option is to wait it out at the emergency room,” Laxton said.
“My hope is that we have a very public conversation about this,” Meyer said. “We need everyone in the state to understand why it’s going to require additional public dollars to have an adequate mental health system,” he said.
“How much can you do in 200 hours?” Barron wrote on her blog post. “How long would you last in a polyester smock and hospital food and people prodding you and poking you and asking you the same questions over and over again?... How much longer do we wait for our country to fix this problem? As these kids lose trust in the system, as their families struggle to work and balance, as we wait until something irreparable happens.”
▪ TEACCH Autism Program at UNC. https://www.teacch.com/
▪ Autism Society of North Carolina. https://www.autismsociety-nc.org
▪ Autism Speaks North Carolina. https://www.autismspeaks.org/site-wide/north-carolina