Autism And Mental Health Issues Make Finding Care A Challenge

Yvonne Martin keeps detailed notes of two years in her life. It starts on March 1, 2016. That’s the day her son, Daniel, first ran away from the family’s home near Evansville, Ind.

He was 13.

“Danny’s parents call 911 in a state of panic,” Yvonne wrote in her entry for that day.  “After several hours, search and rescue is contacted as there is suspicion that he was in the Ohio River.”

It was one of the scariest things she’s ever experienced.  “No parent wants to hear that we’re now going to search for your child in the river because we can’t find him,” she recalls.

Danny has autism and a post-traumatic stress disorder. He’s what some call a dually-diagnosed child.

Getting the right treatment for a child who has autism can be tough. And parents can run into the same problems for a child who has a mental illness. When a child has both autism and a mental illness, the problem can be exacerbated. 

Yvonne’s timeline logs the outbursts, calls to police, trips to acute treatment centers, and the talks with state agencies to get care for Danny.

Photo Credit: Isaiah Seibert/Side Effects Public Media

A dangerous encounter

His family knew he needed residential treatment, but Yvonne had trouble finding a spot for him. He took a major turn for the worse on the evening of July 22, 2017.

“I went up to give him something, and he came out of his bedroom and the first thing he did was he hit me,” Yvonne says.

She and her husband went outside and called 911.

“An officer went in," she recalls. "I said, ‘He’s autistic, please don’t touch him. You don’t touch an autistic person.’”

Yvonne says an officer ordered Danny to put his hands behind his back. “He just stood there, looking at her. She grabbed him and tried to turn him around. And that’s when he fought.

"Two more cops came into the house. We heard, 'Stop fighting.’ We heard one of them yell, ‘He’s going for my gun.’”

She says police threatened to shoot, but eventually subdued Danny and put him in handcuffs.

He sat in a juvenile detention facility for over a year.

Hot potato

Yvonne was glad Danny was safe, and he received some therapy and special education services at the detention center. Yvonne, however, believes it wasn’t enough.

Looking back, she also wonders if this whole situation could have been avoided if Danny had only found care sooner.

Yvonne calls it a game of hot potato. She says every state agency she contacted would say it couldn’t help Danny. She’d be told to call someone else. Finding a residential treatment center was a similar story.

“That is absolutely an issue where we see consumers punted back and forth between providers, often on the basis that they’re claiming they’re not equipped to handle that individual,” says Justin Shrock, an attorney with Indiana Disability Rights. He helped the family find care for Danny while he was in detention.

Shrock says state mental health services are often siloed. It makes finding care difficult for people like Danny, who need more than one type of service.

Yvonne says autism treatment centers wouldn’t take him because he’s high-functioning. And treatment centers for general mental illness would say they aren’t equipped to provide services to children with autism.

Photo Credit: Isaiah Seibert/Side Effects Public Media

The search for a solution

The state acknowledges that there are gaps in care for people with very specific mental health care needs. A spokesperson says a new facility set to open in Indianapolis this year has a unit designed for children with autism, which may help fill some of those gaps.

Amy DeVries is looking for an answer, too. She leads Congregations Acting for Justice and Empowerment, a grassroots group made up of houses of worship in the Evansville area. She has heard similar stories from parents of children all across the autism spectrum.

“It’s not just residential,” she says. “We’re looking at outpatient services, acute care. If a neurotypical child is suicidal, homicidal, they would be admitted to Deaconess Cross Pointe. … That autism diagnosis, nine times out of 10, gets them out of services.”

Deaconess Cross Pointe is the only in-patient, acute mental health care center for children in the area. Its chief administrator says it’s not a good match for many children with autism, partly because the environment can be noisy and stressful. 

Birthday outside of detention

Meanwhile, Danny did find the long-term, residential treatment he needed. After his parents convinced the state that there was no residential facility here that would help him, they were able to send him to St. Louis, around 150 miles away.

Yvonne and her husband visited for Danny’s 16th birthday. Yvonne showed me pictures of his birthday cake.

“He actually got to share it with the other boys he lived with in the cottage,” she says, “and what we ended up getting him was a Nintendo Switch.”

And most importantly, he has the care he needs.

This story was produced by Side Effects Public Media, a news collaborative covering public health.

Follow Isaiah on Twitter: @isaiah_seibert.