After agonizing for years, Tucson mother Harlie Garcia found her answer along a rural road surrounded by cottonwood trees and mountain vistas.
As the parent of a teenage son with severe autism, Garcia is among thousands nationwide who worry about what will happen when they are no longer able, or here, to care for their children. She has turned the question over in her mind for years, ever since 18-year-old Jonathan was diagnosed when he was 3.
Desperate for a plan, she joined a group of Arizona parents starting Echoing Hope Ranch, a nonprofit focused on housing and programming for adults with autism. In recent months, after raising funds and finding donors, they purchased the San Pedro River Inn in Hereford and are transforming it into a future home for their children.
About 500,000 autistic children will become adults in the next decade, says the national nonprofit, Autism Speaks. Coupled with the continuing rise in autism rates, advocates say the need for housing, job training and services is an approaching, and potentially catastrophic, tsunami.
Requests are already coming in from parents desperate to secure one of the Echoing Hope's 10 beds, Executive Director Marla Guerrero said.
In addition to having people live there, Guerrero said Echoing Hope also plans to have enrichment and job training programs. Residents, who will rent their living space, must be at least 18 and have the capability for some independence. Costs are not yet determined.
"This is an enormous issue for a half-million children and their families across the country," said Denise Resnik, co-founder of the Southwest Autism Research & Resource Center and mother of a 21-year-old son with autism.
Placements in group homes or affordable housing are sometimes possible, but might not be the best fit depending on the person's needs. And even then, she said, demand far exceeds what's available.
"There are very few options when the school bus stops coming, which is why programs like Echoing Hope Ranch and others that are sprouting up across the country are critically important," she said.
One in 88 children is considered to be on the autism spectrum, according to the Centers for Disease Control and Prevention. In Arizona, it's one in 64. Autism increased by 78 percent from 2002 to 2008, the CDC reports.
Garcia, a board member with Echoing Hope, said the primary wish for parents is a simple one.
"When we're no longer here," she said, "we want to know our kids are safe."
About 80 percent of the 1.5 million Americans diagnosed with autism are under age 22, says the national nonprofit, Advancing Futures for Adults with Autism. The brain disorder affects a person's ability to communicate and interact to varying degrees of severity, and it is often found in combination with other disabilities.
As executive director, Guerrero already lives at Echoing Hope Ranch with her son, Christopher, 21.
After lunch each day, Christopher rides his bike around the grounds. He fills the bird feeders and sweeps the porch. Christopher is also washing his own dishes and helping prepare his meals, both new accomplishments.
All of this gives him a sense of belonging, Guerrero said.
Christopher has a tendency to become overwhelmed and aggressive, but the quiet at the ranch seems to soothe him, his mother said. But just in case, he wears earmuffs to keep out noise.
Carmen Palacio dreams that her 16-year-old son, Ryan, can someday live somewhere like Echoing Hope Ranch.
Possessing an angelic face and a strong frame, Ryan loves Barney and french fries. He rarely speaks and, like Christopher, is prone to aggression when he becomes overstimulated.
When Ryan was younger, Palacio avoided using medication, but as her son grew bigger, she said, his outbursts became more dangerous. He attends Rincon High School and is in a classroom with six other boys, one teacher and six aides. The boys can stay there until they turn 22.
But then what? "What are we going to do with these big boys who require constant care?" she wonders.
Amy Greiner, mother of 11-year-old Joshua, said parents of children with more severe symptoms talk constantly about the future and what is going to be available.
"Not knowing makes me feel anxious. I'm a planner," she said. "It's impossible to prepare your child for a future without you when you know they are never going to be self-sufficient."
Enhancing work skills and life skills for people with autism is critical, said Scott Badesch, president of the national Autism Society.
There are conflicting reports on the unemployment rate for autistic people, but some say it's as high as 90 percent.
While some might not be able to work due to their intense challenges, Resnik said the unemployment rate is due more to a lack of job training, and employers' lack of willingness to accommodate people with autism.
Badesch said some companies, such as Target, Best Buy and Walgreens, have started hiring autistic people. While employers sometimes need to make accommodations, Badesch said, they often find their autistic employees are among their most focused and reliable workers.
In general, Badesch said, more research is needed to find the best approaches to therapy, employment and housing.
"How do you transition them to an adulthood where they can maximize their potential and their self-sufficiency," he said. "There's just a tremendous lack of available options."
Guerrero said a primary goal at Echoing Hope Ranch will be helping people reach their full potential, whether that means employment or occasional volunteer work in the surrounding communities.
With training and support, people often progress well beyond their apparent limitations, she said.
Take Tia Glenn's parents, who are amazed by the recent progress of their 7-year-old daughter.
Tia communicates using a talking device and sign language. As a second-grader at Wheeler Elementary School, she's also learning to read.
"I'm really focused on getting Tia to a point where I don't have to worry about her future," said her father, Stephen Glenn. "We're really trying to help her become independent."
But Stephen and Zenaida Glenn realize they still don't know what their daughter will be capable of as an adult. If she's not able to be independent, they want to keep her with them for as long as they can.
"The problem then is, what will happen to Tia after we're gone?" her father said. "God willing, something will come up."
Vail resident Jennifer Peterson's 5-year-old daughter, Celeste, is spirited and independent and, while limited verbally, has learned to ask for what she needs.
Like Tia's parents, Peterson dreams Celeste will one day live on her own.
At the same time, she worries: If she can't be independent, will the responsibility for Celeste's care fall on her brother? Will Celeste be vulnerable to mistreatment because of her disability?
"I just don't know what her future holds. It's hard to plan and prepare for that," Peterson said. "Every autistic person is so different and unique."
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For more information
Visit these sites to learn more about autism, and services and housing for autistic adults:
• Southwest Autism Research & Resource Center, www.autismcenter.org
• Advancing Futures for Adults with Autism, www.afaa-us.org
• National Association for Residential Providers for Adults with Autism, www.narpaa.org
• Autism Speaks, www.autismspeaks.org
• Autism Society, www.autism-society.org
To learn more about Echoing Hope Ranch, 8344 S. Hereford Road in Hereford, log on at www.echoinghoperanch.org or email email@example.com
People are welcome to visit the ranch and shop at a yard sale there from 8 a.m. to 4 p.m. this Friday, Saturday and Sunday.
What is autism?
Autism is a complex neurodevelopmental disability that typically appears during the first three years of life and affects a person's ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a "spectrum disorder" that affects individuals differently and to varying degrees. There is no known single cause for autism.
Source: The Autism Society, a national organization based in Bethesda, Md.
Contact reporter Patty Machelor at 806-7754 or firstname.lastname@example.org