When Those With Autism Age Out, What’s Next?
RICHARDSON, Texas — Her daughter’s behaviors worsened six months after high school.
Austen Wheeler was screaming more. She was crying. She was biting herself and watching “Sesame Street” and “Blue’s Clues” — TV shows that the 18-year-old hadn’t watched in years.
Jamie Wheeler-Matlock was beginning to see the answer to a question she had long feared: What would happen when her daughter with autism graduated?
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Austen loved going to Lake Highlands High School. She sang in choir and performed in theater. She had so many friends that her mom called her the school mascot.
Then, Austen graduated. Choir and theater stopped. Her friends left for college.
What was once a full day of activities shrunk to a daily two-hour autism transition program taught through the Richardson school district. The program was meant to help Austen find a job, but the work was beneath her skill set.
She cleaned tables at a nursing home. She blacked-out magazine addresses in hospitals. She ripped out hard drives in a windowless room at a computer repair shop.
The menial jobs frustrated her. Like many people with autism, Austen is creative. She once taught herself how to read and loves talking with people.
Both Jamie and her husband worked, so every week, it was a challenge to find someone to watch Austen. They tried a day-school program, but those can be expensive and cater to low-functioning individuals.
Jamie was running out of options. Last December, two years removed from high school, Austen was spending her days alone in front of a TV or computer.
No organization existed for higher-functioning adults with autism — one that was affordable and provided a group of friends and daily opportunities to interact with the community.
So in January, Jamie created one: Austen’s Autistic Adventures.
Out in society
On a recent Tuesday morning, seven months after she started the nonprofit, Jamie was pulling out of her driveway on her way to the Gentle Zoo in Forney.
She quit her job as an adjunct professor in May to pursue Austen’s Autistic Adventures full-time. The nonprofit schedules daily activities for high-functioning adults with autism, which typically means they can communicate, use a restroom and follow requests.
“Instead of trying to hide their behaviors or prevent their behaviors, which are different no doubt, we need to take them out into society every day,” said Jamie, who suggested that many people have never met someone with autism.
The activities differ, from a movie with bottomless popcorn at Alamo Drafthouse to dance parties at Jamie’s home. They go rock climbing and visit museums. They learn how to create papier-mache puppets.
The daily events cost $20 to $25 each and are listed on Jamie’s website. They last roughly three hours, mainly because social interaction is challenging for people on the autism spectrum.
Jamie has about six to 10 regulars, ranging in age from 16 to 28. She caps every event at 15 people. Multiple volunteers tag along, with a ratio of at least one aide for every two adults with autism.
Search for solutions
Jamie isn’t the only parent of an adult with autism that sought a solution in North Texas. A Dallas couple is planning to build a $12 million community for young adults on the spectrum.
Leslie Long, vice president of adult services with Autism Speaks said this is a growing trend across the country.
“While there are options (for adults with autism), they may not fit someone’s idea of what their child’s adult life should be. We see families all over the country saying, ‘This is not what I want (for my child), so I’m going to create it.'”
Jamie does the fundraising, the event planning, answers emails and does social media for the nonprofit.
She’s also the chauffeur, which is why on this Tuesday, she was on her way to pick up Maddie Blanton.
Blanton is a 22-year-old with autism. She lives 10 minutes away. After picking her up, Jamie drove 20 minutes to Davis Hecksel’s home. He’s a 28-year-old with cerebral palsy and autism.
The transition program adults with autism participate in after high school ends at age 22. Both Blanton and Hecksel have aged out. According to Autism Speaks, 50,000 teens age out of school-based autism services every year.
“And we as parents are kind of stuck with not a lot of choices,” said Jennifer Blanton, Maddie’s mother. “Either expensive day care programs that are not enjoyable (for individuals who are high functioning), or they’re stuck at home with nothing else to do because Mom and Dad are working.”
Her daughter has tried jobs such as folding boxes and sweeping parking lots.
“I think most programs trying to help autistic adults are going at it backwards,” Jamie said. “They’re training them for jobs that are under their skill set. What we need to do is improve their social skills and their tolerance so that they’re better able to pursue jobs more to their abilities.”
Jamie encourages parents to let their children with autism try activities they’ve never done before. For example, Blanton’s parents were hesitant to send their daughter on an adventure that included lunch at a hibachi restaurant. Their daughter was a picky eater, and they thought she wouldn’t eat anything.
“But Maddie ate every bite,” Jamie said. “She even asked her mom to cook teriyaki chicken at home.”
‘We’re all a little different’
Seven months after starting the nonprofit, Blanton, Hecksel and Austen are now friends. Blanton’s favorite adventure has been rollerblading. Hecksel and Austen are boyfriend and girlfriend and refer to each other as “honey.”
On this day, they all spent time together at the Gentle Zoo, which offers a petting zoo, an animal show and a sensory tour tailored for those with autism.
Austen wore a Krispy Kreme hat and a Krispy Kreme shirt. She was quick to talk about one of her favorite movies, “Muppet Treasure Island.”
The day’s group also included Harry Marsch, a 19-year-old from Frisco who has autism and is nonverbal, as well as Tobias Gaston, an 16-year-old on the spectrum from Denton. Five supervisors, including Jamie’s 17-year-old son, tagged along.
Everyone seemed to be having fun except for Gaston. Jamie asked if the animals made him nervous. Gaston nodded.
“Well, when you get nervous and you try something new, and nothing happens, then you’re more brave the next time,” she said.
Gaston took a step closer to the animals.
After the petting zoo, the group sat inside for an hour and watched an animal show. Hecksel put his arm around Austen as an instructor brought out a chinchilla, hissing cockroaches, a bearded lizard, a python, a baby turtle and more.
All five adults with autism were engaged and quiet. Austen was always the first to raise her hand when asked who wanted to pet the animal. There were times when the 20-year-old interrupted the instructor, and at one point, explained why they were all at the Gentle Zoo.
“I have autism, and I do everything differently,” she said in a matter-of-fact tone. “Look, I’ve got my Krispy Kreme baseball cap and my Krispy Kreme t-shirt.”
“You know what,” the instructor said, smiling. “I don’t have autism but I do everything differently, too. We’re all a little different.”
When the show concluded, the group went outside to a large jumping pillow. The five adults took off their shoes to jump, and Jamie joined in.
The day ended with a short train ride at the zoo, then each adult went home in the car they arrived in.
Jamie wants to buy a van to shuttle the adults someday. For now, the nonprofit can’t afford one. In the future, she wants to schedule overnight events such as camping or a weekend at Great Wolf Lodge. If she can raise enough money, she’d love Austen’s Autistic Adventures to be free.
Jamie knows how necessary a program like this is. She sees it in her daughter. Austen is crying less. She rarely screams. She’s no longer biting herself. She now has something to look forward to.
The following day, they’ll go swimming at the Texas Pool in Plano. Later in the week, a community member will teach the group how to make jewelry, and they’ll also attend a private pottery-making session.
“I wake up every day so happy to do this,” Jamie said, dropping off Blanton after another three-hour activity. “I’m not kidding. It doesn’t feel like work.”
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