Becky Aman and her 10-year-old son, Cooper, arrived for physical therapy at a Coralville pool on Monday to discover the hot tub was closed for repair.
Mom sensed a problem in the making.
Cooper, who was diagnosed with autism spectrum disorder just before his second birthday, has kept the same weekly pool therapy routine for about a year, and the hot tub has been the reward at the end.
The lanky boy with sandy blond hair can fixate on minute details — a piece of tape on a camera, a strange object out the window or an unexpected change such as a closed hot tub. That fixation quickly, and with little warning, can escalate to a full-blown meltdown.
On this day, Cooper moved on. He settled into the therapy session: jumping off the pool’s edge, putting his face underwater — a recent milestone — and diving for plastic torpedoes.
“You have challenges every day that you have to be on alert for or aware of,” said Aman, of Iowa City. “You hope for good days and know that there’s going to be plenty of not so good days.”
Autism is a brain development disorder that comes in a variety of forms and degrees of severity, and diagnoses are becoming more prevalent.
The Centers for Disease Control and Prevention released new figures in March that 1 in 68 children have autism spectrum disorder — up 30 percent from two years earlier and up 123 percent from eight years earlier.
Autism spectrum disorder encompasses several terms that once were distinct subgroups, including autistic disorder, childhood disintegrative disorder and Asperger syndrome among other developmental disorders, according to Autism Speaks, an advocacy organization.
The earlier the better
Cooper started displaying warning signs early in his life.
He didn’t gesture. He’d stare at ceiling fans or gravitate to straight lines, such as fences. He’d flap his hands and tiptoe, a sign of imbalance typical of autism.
And he wasn’t talking, and didn’t until he was 4.
Cooper continues to have difficulty with conversational skills, social skills are a work in progress and he exhibits repetitive behaviors, which he is learning to control through therapy, Aman said.
Experts say it’s important to be mindful of warning signs and have children checked early.
“The earlier the interview, the better the outcome for child and the family, as well,” said Debra Waldron, director of the University of Iowa Division of Child and Community Health. “If a child doesn’t have autism, no harm done. But the reverse isn’t true.”
In 2009, Iowa became the 19th state to enact autism insurance reform, according to Autism Speaks. Iowa is one of 31 states with laws that specifically require insurers to provide coverage for the treatment of autism, according to the National Conference of State Legislatures.
The law only applies to insurance plans for state workers. It requires coverage for treatment and diagnosis under age 21, and a cap of $36,000 a year in benefits for treatment of children with autism.
Waldron’s division houses one of 13 Regional Autism Assistance Programs, which provide free support to children with autism and their families. In April, the program started determining eligibility for additional services under a state law passed in 2013.
The law set up a fund to defray the costs for behavior analysis for children with autism younger than 10.
Working it out
Unfortunately, Cooper has aged out of that program.
Many days for Becky and Cooper Aman are a struggle.
Something can trigger a memory from two months ago, and set him off. A trip to the grocery store can turn into a nightmare.
“There’s really no way to plan for those,” Aman said. “You feel really helpless ... You have to have an enormous amount of patience. You can’t let the stares or people talking bother you. It used to bother me, but I don’t let it bother me anymore.
“It is frustrating. Even if you have a lot of patience, it still gets frustrating.”
Much of Aman’s life, even when Cooper isn’t around, is spent on call.
She arranged a late work schedule as a nurse at University of Iowa Hospitals and Clinics, so she can be available during the school day and to take Cooper to appointments. Though her ex-husband is involved in Cooper’s life, Aman is the primary caregiver.
“Parenting is hard enough, but parenting an autistic kid presents so many challenges than you realize,” said Jennifer Aldrich, a fitness coordinator and close friend of Aman’s.
Support groups for families with autistic children, friends and an increasing number of activities geared toward children with mental illness are helpful, Aman said.
But Aman’s main escape for several years has been her local gym, Core Fitness, where Aldrich works. The workout helps set aside life outside for an hour or so, and puts her in a position of control.
Aldrich, whose niece also has autism, wanted to do something, so she organized an awareness campaign.
In April, fitness class instructors donned blue — which is the color adopted by the autism awareness movement — they put up posters and collected donations at the three Core locations in Johnson County.
“We’ve gotten positive feedback,” Aldrich said. “I think more people are touched by someone with autism than we are aware.”
‘Because I’m happy’
Cooper has plenty of good days, too.
The structure of school as a third-grader at Hoover Elementary suits him well. He taught himself Beethoven’s Symphony No. 5 on the piano through YouTube tutorials, which is an example of his positive outlets.
And he is making progress in therapy at Genesis Pediatric Therapy Center, where he takes sessions for occupational and physical therapy each week.
Cooper seems to enjoy some of the therapy activities, which are designed to build strength.
Before swimming on Monday, Cooper spent an hour with an occupational therapist. He stretched out in a piece of fabric suspended as a swing from a beam, and flew through the air like a superhero.
“I’m a superman,” Cooper said over and over as he’d launch himself.
“How do you feel?” occupational therapist Mary Gordon asked after Cooper had just completed an obstacle course intended to improve balance.
Gordon showed a card with boxes displaying green for calm, yellow for changing mood, red for agitated or frustrated and “rest stop” to indicate a break is needed.
Cooper pointed to the green, saying “because I’m happy.”
The exercise improves Cooper’s vestibular processing, which controls spatial awareness and equilibrium and is an important function in childhood development.
“It’s like his internal GPS,” Gordon said.
Having a child with autism has taught Aman patience and humility, but it takes work.
Life no longer includes thinking about the future. It’s about taking it one day at a time, she said.
“Let’s just get through today,” she said.
She said she hopes the stigma around autism subsides through better awareness.
“We need to truly be aware of autism, not be afraid of it,” she said. “Cooper is still just a kid. Talk to him. Ask him. He might want to give a hug at an inappropriate time, but we can help him learn.”