When a special-needs child becomes an adult
Living With Autism | Public support for people with autism slows to a trickle when they come of age
by Sophia Lee
Posted 4/19/14, 08:30 am
This is the third installment of our reality show series about Jennifer Towler, 38, and her 19-year-old son Bradley, who has autism. Jennifer has a seemingly impossible vision for her son: She prays he’ll be an evangelist sharing the gospel to the disabled. We’ll chronicle the challenges of raising and ministering to someone with autism, the happenings in the Towlers’ home, and the joy and endurance found in God’s faithful promises.
LOS ALAMITOS, Calif.—Bradley Towler was in his room when I visited one recent sunny Saturday afternoon. I could hear him muttering and shrieking in short spurts. It was one of those days when neither his mother, Jennifer, nor his grandfather, Frank, was home. His 24-year-old caregiver, Joe Maples, was sitting by the kitchen by himself.
“Bradley’s having a meltdown right now,” Joe told me, just as Bradley’s whimpering yap interrupted him. “I’m just letting him sit down and relax for a while. He’s needing his alone time right now.”
If Bradley screams when Joe pokes his head in the room (and he did scream, several times), that means he’s still not ready to face anyone or do anything. There’s nothing Joe can do but leave him alone, though he always keeps a baby monitor nearby. Throughout our conversation, Joe would jump up every five minutes to check on Bradley even if it upset him because he occasionally trembles and faints into violent seizures without warning. “His seizures are scary,” Joe said. He has witnessed several of those unpredictable seizures while caring for Bradley three times a week for the last three years. Thankfully, Bradley hasn’t had one for a while.
April is Autism Awareness Month. Physicians, educators, and politicians frequently use the term “epidemic” to describe the situation. According to the latest data from the Centers for Disease Control and Prevention, about one in 68 children meet the criteria for autism. In 2007, one in 150 children were identified with autism; that’s a 123 percent jump in rates in less than a decade, making autism the fastest-growing serious developmental disability in the United States.
Nobody knows why the rate of autism is spiking. Some people theorize the increase comes mostly from greater awareness of the disorder among parents, teachers, and doctors. Not only is the public becoming more informed, but also more funding is being pooled for research, resources, and public and private services. Still, many who care and support people with autism say it’s still too little, too slow, and too late.
Bradley lives in Southern California, one of 34 states in America that established specific mandates requiring insurance companies to provide coverage for autism. In California alone, the state’s Department of Developmental Services (DDS) serves about 31,000 Californians with a yearly bill of more than $210 million. DDS reports that 3,000 more are added to the caseload each year.
Though the majority of the autism population is ages 3 to 22, nature predicts the inevitable: Thousands and thousands will age into adults over the next few years. Though children and youth 3 to 22 receive special education programs through local educational agencies, services for adults have not caught up to the more comprehensive child-treatment programs. Adult service needs are individualistic and cost about 245 percent higher than those for children. Lack of preparation and timely response to such burgeoning needs might lead history to repeat itself after the tragic mass deinstitutionalization of seriously mentally ill patients.
Turning 23 is more doomsday than “Happy Birthday” for many parents who wave helpless hands at this imminent, dreadful question: “What will happen to my child when he’s no longer a child?” Or worse: “What happens to my child after I die?”
Physiologically, Bradley is no longer a child. He may still play with McDonald’s toys, but he’s a 6-foot-1-inch, 240-pound, 19-year-old guy, fit and strong enough to play linebacker for a college football team. When Joe takes him to supermarkets and drugstores for a stroll, he trails and watches him closely not just for Bradley’s safety, but for other people’s as well. When Bradley becomes agitated or anxious, he expresses his emotions with masculine aggressiveness that may physically hurt others. Even his mother Jennifer has a hard time comprehending his desires at times, and I’ve seen both mother and son tear up in despair and frustration. Once Bradley turns 22 in three years, many existing ties to the community will be automatically cut off.
Joe, who takes care of two other clients ages 25 and 28, worries for the severely autistic adults. Though California regional centers still provide certain services such as at-home care, independent residential placements, and 24-hour care facilities, for the severe dependents, “all they do, really, is sit at home all day,” said Joe. “They give up on the hard kids, you know what I mean? And the hard cases just sit at home. I always feel the adults in crisis cases are not wanted anywhere.”
But what if there was a facility for the low-functioning autistic adults that not only provided medical care but also social programs to keep them active and engaged? Joe, who has worked with autistic individuals for five years, said it’s “something I’ve actually been thinking about what I want to do in my life.”
Joe isn’t the only one with good ideas to fix the leaks in the autism issue. California legislators recently met to patch the very policy they implemented to help their autism population. The state code that mandated insurance coverage for autism treatment has, like most well-intended policies, created the unintended consequence of spiking co-pays and deductibles. Greater awareness and earlier diagnoses of autism have expanded access to treatment programs, but that also means a dearth of service workers, funds, and resources to meet those swelling demands.
The state is broke, the nation is broke, the people are broke—and autism is just one leak in the national pot of boiling problems that desperately need money, brains, labor, compassion, and love.
Bradley’s mother Jennifer once told me something that applies directly to this deep poverty within autism: “You know when you push something for God, He’ll make it work. But if you’re pushing it for yourself, then the heavens won’t open up. You have to take it moment by moment. Make your plans, but let God know what you’re doing, then acknowledge Him, and He’ll amend it and bless it and make your path straight.”
In other words, let’s pray.