WASHINGTON - “He had these meltdowns, and we couldn’t control him,” said Deanna Bear Heels, a member of the Sicangu Lakota tribe living on the Rosebud Reservation in South Dakota. Two years ago, she took custody of her grandson, Nick (not his real name), a 10-year-old boy with a history of behavioral issues. “My sons would have to hold him down until he calmed down,” she said. “At school, he couldn’t function whenever it got too loud in the classroom. And when he’d have one of his episodes, they’d call me to come get him.”
Finally, a school counselor suggested Nick showed signs of autism.
“And I said, ‘Oh, okay. So, what is that?’” Bear Heels said.
Autism, or autism spectrum disorder (ASD), is a broad range of conditions characterized by social, communication and behavioral challenges. It may also be accompanied by anxiety and depression.
ASD can’t be diagnosed by blood tests or x-rays. The only way to diagnose it is to observe behaviors that can show up as early as 12 months of age.
The U.S. Centers for Disease Control and Prevention estimates that one in 59 children has ASD, but it only conducts counts for 11 communities in 11 states across the United States. The number of American Indian/Native Alaskan (AI/AN) children isn’t known, but a 2009 University of Minnesota study reported that AI/AN children with autism are 13 percent less likely to be identified than white children with the disability. This is not to suggest ASD is less prevalent in Native communities; tribal children just aren’t being diagnosed.
“Much of this is due to a lack of awareness,” said Fletcher Scott, an autism expert at Western Washington University. For several years, he worked with the University of New Mexico’s Center for Development and Disability, evaluating children on several Native reservations.
“In Navajo, there’s no word for autism or disability. A lot of the elders didn’t understand what we were talking about. They didn’t necessarily see the signs of autism as something to be concerned about,” Scott said.
Parents and teachers may confuse autism with other conditions or chalk up behaviors to disobedience. And even when Indian children are diagnosed with autism, they don’t always get the help they are entitled to receive.
The Individuals with Disabilities Education Act (IDEA) requires public and Bureau of Indian Affairs-funded schools to provide “free and appropriate education” to children. But the law doesn’t specify what that entails. Depending on budgets or teacher skill levels, school systems may hold back, providing only a minimum of services.
Private services can run up to $60,000 a year and are thus out of reach for many Native families, particularly those on poor, rural reservations or remote Alaska Native villages.
Meskee Yatsayte is a member of the Navajo Nation living in Gallup, New Mexico, and the mother of a teenager with ASD.
“When I first put him into school, he had one-on-one occupational and speech therapy” she said. “But that all stopped when he got to middle school, when they switched to computer-based speech therapy.”
But screen time proved to be too overwhelming for her son.
“And there wasn’t anybody in the county that could come out and teach him one-on-one, so he went without that up until high school,” she said.
Today, at 16, her son still cannot speak.
“He gets so frustrated that he’ll hit things, throw things,” Yatsayte said. “We’ve contracted with the school for him to stay until he’s 21, only because after that, there aren’t any more services out there for him.”
Early intervention critical
Studies show that the sooner a child with autism gets services, the greater the chance for learning — and in some cases, “falling” off the autism spectrum altogether.
Korryl High Bear, a member of the Cheyenne River Sioux Tribe, or CRST, in Eagle Butte, S.D., has a daughter with ASD.
“She didn’t walk until she was 18 months old,” said High Bear. “Then as she started getting older, she still wasn’t talking. She was also very sensitive to sounds, to emotions.”
High Bear was forced to drop out of college to care for her daughter.
“Being that she was non-verbal, I couldn’t trust her with just anybody,” she said.
In the end, High Bear turned to a unique program: The CRST Birth to Five Program.
“We are about the only ones — we don’t know anywhere else — that do what we do,” said Lorna Shoemaker, the program’s special education (SPED) teacher.
She explained that the Bureau of Indian Education, an arm of the Interior Department’s Bureau of Indian Affairs, provides the tribe funds, giving tribal leaders the choice of how the money should be used. CRST chose to use the funds to help children with special needs.
“We evaluate children with developmental disabilities and provide direct services, on site, at home or in the school,” she said. “Depending on the needs of the child, this might include physical therapy and occupational therapy. We also have a speech therapist and a SPED teacher.”
If the child needs a service the Birth to Five program can’t provide, it will refer parents to other facilities.
“They gave my daughter intensive therapy three times a week,” said High Bear. “After about a year, they sent us to the [University of South Dakota’s] ASD clinic in Sioux Falls. They even paid for mileage and lodging, because it was six hours away and it was a two-day appointment.”
Shoemaker acknowledges that the program can’t reach every child in need.
“There are lots of kids we don’t know about — our reservation is big,” she said. “But if we know someone, we will turn over every stone to get to them.”