If Kari Green of Rapid City ever wants to see her 17-year-old son, Christian, she has to get in the car and make the five-hour drive to the eastern edge of the state.
She has to do this because her son has autism, and the closest place that can offer him the level of care he needs is in Sioux Falls, nearly 350 miles away from their home in Rapid City.
“It’s not easy,” Green, 35, said on Friday morning, a few hours before she would get behind the wheel to make the trek once again. “But it’s my son.”
Green’s family is one of an estimated 200 in Rapid City with a member who has a diagnosis of autism spectrum disorder. Until recently, whenever these families needed to go somewhere to help calm their autistic children, brothers, sisters, or spouses, they could take them to Rapid City Regional Hospital’s Behavioral Health Center at 915 Mountain View Road.
But as of last week, that option is no longer available, and the only alternatives for inpatient or residential care for individuals seeking treatment for autism are hundreds of miles away.
“We are at a crisis point,” said Sally Burns, president of the Autism Society of the Black Hills. “We don’t have a facility to take people — especially children — with autism.”
Last week, Rapid City Regional sent out a letter announcing that beginning Feb. 1, the hospital’s behavioral health center would no longer be accepting “patients who have neurodevelopmental/cognitive disorders such as dementia, Alzheimer’s disease, or Autism Spectrum Disorder.”
For families and individuals dealing with those conditions, the news was devastating.
“In a city with a population of over 70,000, to have that as our only option, and now that being taken away from us, is very, very frightening,” Green said.
The change is being made, hospital officials have clarified, because the behavioral health unit is not equipped to handle individuals with extreme cases of the listed diagnoses who have a history of violence.
But while Rapid City has residential senior living facilities that can accommodate persons with dementia or Alzheimer’s, there is no other facility that can handle autistic individuals.
The Centers for Disease Control and Prevention describes autism spectrum disorder as an incurable developmental disorder that can result in a wide range of social, communication and behavioral challenges. Manifesting in childhood, the disorder can significantly affect how a person with a diagnosis learns, responds to emotions and relates to the people around them.
“Children with autism, they have trouble with change,” Burns said. “They have trouble with sensory issues, they are most likely unable to communicate their thoughts and feelings, so they become very frustrated, and that frustration sometimes comes out in a more physical or violent way. That’s when they can become dangerous to themselves and others.”
Green recalled one such “crisis mode” when she was driving in the car with Christian.
“He started punching me in the side of the head,” Green said. “We made it home and we sat there a second. He said, ‘I love you, Mom’ and got out of the car, like nothing even happened. As he was walking up to the house he turned around, realized what he had done, and started crying. He went into the house, and I could hear my house being ripped apart.”
Green also has a 4-year-old daughter named Brooklynn.
“I always think what would have happened if he went into that mode when she was with me,” Green said. “I could have been knocked out, we could have crashed.”
It is in times like these when Green and others with autism in their families need help.
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“You get to a point where you feel really alone,” Green said. “You have to stay strong for your children, but sometimes you just break. You have to go behind a closed door and just break. It’s a nightmare.”
Green has had to take Christian to Regional Behavioral Health on several occasions, enrolling him in the inpatient unit there for between a week and a month at a time. Medication isn’t enough, Green said. As Christian progresses through puberty and his outbursts intensify, the only solution is to find somewhere for him to go for extended periods of time, where trained professionals can help calm him down.
The problem is that the Rapid City Regional Behavioral Health Center has never really been the right place for that, hospital officials have said.
There are 44 beds at Regional’s behavioral health unit, all in semi-private rooms. For an autistic person in “crisis mode,” these kinds of conditions can actually make things worse, Regional officials say. Those patients might be sharing a room with someone in just as much distress as they are, who is perhaps psychotic, suicidal, or coming down from drugs.
“You throw a kid with autism in there who craves structure, that can be a very explosive environment for them,” said Dr. Mark Garry, a psychiatrist who works at Regional’s Behavioral Health Center.
The behavioral health unit will continue to take in other potentially violent individuals with, for instance, schizophrenia or bipolar disorders, Garry said, but only because these disorders can be treated in that setting with medication and therapy within a matter of days if not hours. The same cannot be said for individuals with autism in “crisis mode,” who require extended care.
From now on, Garry said, if someone with autism in their family goes to the Rapid City Regional emergency room or behavioral health unit looking for help, the individual with autism will be “stabilized” or sedated, sent home, and referred to inpatient services east of the Missouri River, either in Yankton, Redfield or Sioux Falls.
Christian has been living in the residential program at Lifescape, a disability services organization in Sioux Falls, since the beginning of January. The Lifescape in Rapid City, like many other mental health providers in the area, does not provide inpatient services for treatment of autism.
Green is happy to report that Christian is thriving in his temporary home in Sioux Falls. The long drive to see him on the weekends is difficult, but she knows it could have been worse.
“If Lifescape had not taken my son, he would have been held at the Yankton mental health facility then sent for out-of-state services in Utah,” she said.
Despite the lack of resources in Rapid City, Green has no plans to move her family, nor does she think she should have to.
“This is our home,” she said. “I love the Black Hills. I can’t imagine calling anywhere else home.”
Green knows that Rapid City Regional’s Behavioral Health Center was never an ideal place to send her son, but before she found Lifescape, it was the only option she had. Now that it’s gone, she and others have nowhere else to go that isn’t hundreds of miles away from home.
“Closing a door, that’s not an answer,” she said. “To now be left with nothing, that’s unacceptable.”
The need for reliable, long-term autism services will not go away. If anything, the opposite is true. According to a 2012 CDC study, one in 68 children in the U.S. has autism, an increase from 2002.
It is now clear to Burns that the Black Hills region has been in this moment of crisis for some time. Finding a solution, she said, will require the cooperation of a wide array of state and community stakeholders. What the results of that cooperation will look like is unclear, but Burns knows one thing for sure.
“Something needs to happen,” she said. “And it needs to happen pretty quickly.”