What the Future Holds for Millions of Autistic Adults
Caring for an Autistic Adult
Pam Byrne's 20-year-old son, Alex, isn't living the life she planned for him. But parenting an autistic adult has taught this proud mom the value of strength, devotion—and a sense of humor.
When Alex was born, Pam and Ed Byrne were over the moon. It quickly became clear that their son was not a typical kid: Alex was reading the encyclopedia by age 3, and had an incredible facility with numbers.
But it was plain to Pam, a middle school teacher in Valparaiso, IN, that Alex's speech and other developmental milestones lagged far behind his amazing brainpower. Pam suspected autism. Sure enough, Alex was diagnosed at age 4.
"It was scary. It wasn't the life I envisioned for him," she says. Pam's own future was of course greatly affected by this news, but she soon learned to take things day by day. "A therapist told me, 'Always focus on Alex's strengths, not his weaknesses, because his strengths are what will take him places,'" she says.
Bringing out Alex's strengths has helped Pam to tap into her own—two of which are her faith and her dry sense of humor. By age 10, Alex, a gentle, mellow kid, had memorized lists of prime numbers (he's now up to 350) and almost 1,500 digits of pi, a mathematical ratio that most people barely remember learning in high school. But he spoke in two-word sentences for years, wasn't fully toilet-trained until he was 13 and, like many people with autism, he sometimes engages in repetitive behaviors. "There are times you bargain with God," she says. "'If you only make him stop rewinding that videotape over and over, I will give you all the glory! If you only make him go to the potty on his own, I will give you all the glory!' You have to laugh at it," she says.
Sixteen years later, largely because of Pam and Ed's devotion and vigilance, Alex, 20, has come far. Pam blogs about what she's learned at One Autism Mom's Notes, emphasizing that what works for her family may not be for everyone. "It's like, if you have a good recipe, you want to share it, but if you don't like my shrimp, don't make it!" she laughs. "That's totally fine!"
Much about the disorder remains a mystery, especially when it comes to teenagers. Indeed, when people think of autism, they think of elementary school–age children, but kids grow up, and their parents—especially ones like Pam and Ed, who don't have a lot of money to pay for care—must fend for themselves. The nonprofit consortium Advancing Futures for Adults with Autism estimates that of the 1.5 million or so Americans who have autism spectrum disorder, roughly 80% are under 22. As those kids come of age, there will be an "autism tsunami" of young people leaving school who continue to need services.
Pam had expected to be a full-time teacher, but when the extent of Alex's needs became clear, she and Ed, a college professor, saw no choice but to homeschool him. Alex was in a preschool for special-needs kids, but when he'd make disruptive noises, he'd be made to wear a sign that said "Ignore me!" and restrained when he wandered around the room. So Pam arranged a half-day teaching schedule. Ed stayed with Alex in the mornings while Pam taught, and she was with Alex afternoons and evenings, when she took Alex to therapy sessions.
Insurance and the school district covered some therapy, but for the most part Pam and Ed strained to pay for what they felt their son needed. "We did it all—occupational, speech, visual and sensory integration therapies. The only thing we didn't do was swim with dolphins," Pam jokes. "And that's only because there aren't so many dolphins in the Midwest."
Something was working, because Alex's spoken vocabulary and social skills improved. Unpredictable things upset him, however, such as the price of gas, people crossing their legs, contractions (for a while, he wanted his parents to saycould notandwill notinstead ofcouldn'tandwon't—and became agitated if they failed to comply).
Gradually he outgrew each eccentricity, and continued to make gains into his teen years. "With a child with special needs, you always have to look for the good in every situation, and rejoice in the little bits of progress," Pam says. Alex loved board games, NASCAR, watching game shows with his mom and listening to Bob Dylan with his dad. Pam dislikes Dylan, so Alex teased her by imitating the singer's nasal voice. He even talked about wanting to become a meteorologist or a stock market analyst. "I thought he could be a college professor like his dad," Pam says. "It would be a job in which he could be quirky and that would be OK." By the time he was 17, she could foresee a happy future and greater independence for her son.
A Step Backward
Unfortunately, autism isn't predictable. Shortly before Alex turned 20, his anxiety levels ratcheted up and he began lashing out. Medication didn't help. Anxiety and aggression are common among young men with autism, Pam says, possibly because of the surge of testosterone. "It was awful," Pam says. "I said to my mom, 'This isn't Alex.' He's sweet and thoughtful and loving and easygoing. This Alex would get a look in his eye and I'd think,I don't know who you are." After each rage abated, Alex felt terrible, Pam says. "He'd say when he went to bed, 'I did bad things today,' and he'd start to cry." He simply couldn't control himself, she says.
Pam's lowest point was in April 2012, when Alex attacked his father three times, and had to be admitted to a psychiatric ward. "We went back out to the parking lot and I started to sob," says Pam. "Ed tried to comfort me. I was afraid and full of sorrow, but I was also crying from relief: This was the moment I'd always dreaded, having to hospitalize my son. Now it was here and I could face it." Pam was also somewhat ashamed of her feelings. "I thought,I should be more sacrificial!But I also knew we'd done all we could do."
Pam and Ed have a rock-solid marriage, and unlike many families of kids with special needs, they're in agreement on treatment options and parenting strategies. The initial 12 days their son was in the hospital brought the couple even closer. "We went out to dinner, which we hadn't done in ages," Pam remembers. "We came home to a quiet house. We could just talk. Our world had revolved around Alex for so long."
Faith, Hope and Humor
Such love and mutual support has been critical for the Byrnes. In the following months, Alex relapsed twice, and fighting with insurance companies and figuring out how to help him going forward is an ongoing stressor. Kids with disabilities are guaranteed schooling until they leave public school at 18 to 21, but families are then left to work it out on their own. Private help for Alex is out of Pam and Ed's reach, and while Alex qualifies for Medicaid, many treatment programs won't accept it. What's more, there are far too few state-run programs for adults with special needs, and it can take years to get government services.
What Pam and Ed face is a story many parents could tell: When Alex was at his worst, the only long-term program the hospital could find for him was in Illinois and cost 0,000 a year, but the family's plan wouldn't cover it. Even if the Byrnes could pay for it, sending Alex to Illinois would have cost him his Indiana disability benefits. The only option Pam and Ed had was to care for a heavily medicated Alex at home.
Today, eight months after he went into the hospital, Alex is doing much better—and is back to teasing his mom, saying that he wants to throw a party...and invite Bob Dylan. The family also learned that he will be eligible for a state-funded day program, which will allow Pam and Ed some breathing room. "The struggles make the triumphs even greater," Pam says.
Like any mom whose child is leaving the nest, Pam is proud, but nervous. "I imagine this is how other parents feel about sending their children off to college," Pam says. "On the one hand, it'll be a relief, but I worry about how he will do out there." Overall though, Pam is hopeful. "A nice thing about autism is that kids do get better and better. And they often have the capacity to get better as they grow into adulthood," she says.
Video: Autistic Young Adult Housing- 29 Acres' Debra Caudy
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