Life on the spectrum

NICK EICHER, HOST: Today is Thursday, October 4th. Thank you for turning to WORLD Radio to help start your day.

Good morning. I’m Nick Eicher.

MARY REICHARD, HOST: And I’m Mary Reichard.

Coming next on The World and Everything in It: Autism spectrum disorders. The Centers for Disease Control estimates that 1 in every 59 children is affected. Boys are four times more likely than girls to be on the spectrum.

EICHER: Though frightening, the diagnosis is just the beginning of what’s likely to be a long journey. Some children will have minor deficits. Others will be severely disabled. Parents struggle with fear about the future and all the unknowns.

Six years ago, our sister publication, WORLD Magazine, profiled one family struggling with those issues.

We thought it was time for an update. So we sent Katie Gaultney to check in with that Texas family. She brings us this report.

KATIE GAULTNEY: William Fowler has a new favorite toy: a green watch band.

AUDIO: [Sound of slapping the watch band]

His favorite dance track plays from the television. But right now, William isn’t dancing. He walks around his living room, slapping the band into his hand over and over. He’s “stimming.”

That’s a term used in autism circles for repetitive sensory behaviors. Some kids on the spectrum flap hands or arms. Some rock back and forth. For William, it’s watch bands. Dad, Seth, explains:

FOWLER: He’s always tapping on something. And so right now that’s his favorite watch band. Previously it was a blue watch band, but he tapped on it so much it disintegrated.

William was diagnosed with autism spectrum disorder a decade ago, when he was 2. Mom, Melanie, has a background in speech language pathology and worked with special needs kids before having William. His parents suspected he wasn’t developing typically. But they took the news hard.

FOWLER: It was pretty devastating… Were we shocked? No, we weren’t shocked. It wasn’t a surprise to us, but it certainly, I think we went through the typical grieving processes and… were very, very saddened by it.

Now William is 12. He’s tall, with large eyes and shaggy brown hair. He’s almost a teenager, and his appetite proves it. He tells me what he just ate for lunch:

FOWLER: Fruit. Vegetables. Salami. Cheese bar. Crackers. Chips. [Dad:] Were you hungry? Yes, I am hungry. Okay, good.

After years of intensive therapy, he is surpassing expectations. He’s able to answer yes or no questions, and offer short responses. He’s affectionate and doesn’t mind hugs from his family. And he’s making progress with self-care.

FOWLER: He is able to, uh, take a shower on his own and bathe and he’s brushing his teeth, he’s clothing himself, he’s able to let us know when he needs space, when he needs to use the restroom.

But many days are still hard.

FOWLER: Yes, life is a rollercoaster with him. We go two steps forward and sometimes we go one—sometimes we go five steps backwards.  

One of William’s biggest advocates is his 10-year-old sister, Margaret. They dance together, read books side-by-side, and have sleepovers in each other’s rooms. Today they are bouncing on the trampoline in the backyard and talking about his favorite show, The Magic School Bus:

FOWLER: William, what’s your favorite Magic School Bus? [groans] The new one. You like the new one? Do you like the haunted house one? Yes.

Margaret has seen William make huge strides:

FOWLER: A long time ago he would not answer, or he would not do certain things you asked for, and now if you ask him a question he’ll be like, yes, no, whatever… And that’s pretty cool.

Seth and Melanie still grapple with unmet expectations—and loneliness. For example, Seth loves sports, and he once imagined that he would have “typical dad” experiences with William.

FOWLER: I would have friends who — They would just complain about, oh my goodness, we have a weekend of baseball games and I would want to just honestly punch him in the nose and say, look, I would kill to have three soccer games in a day. Not happening. So there is an isolation as, as a dad.

As William grows, the Fowlers face fresh challenges. They’ve found a good school that works closely with his therapists. But he’ll soon be a teenager.

FOWLER: He’s also now 12, and we’re really embarking on the puberty stage and, and all that that entails, which is — it’s an ongoing journey. He’s getting older now and he’s heavier and he’s, he’s just bigger.

But amid new hurdles are new joys. Seth recently took William to a college basketball game. He saw a glimpse of a “buddy relationship” growing between him and his son.

FOWLER: I never thought I would take my son to a basketball game. Did he realize why we were cheering for the orange team and not necessarily for the purple team? No, but he enjoyed eating popcorn and anything else I would buy for him, and I was happy to buy him whatever, and he would like to cheer, and he would mimic me a lot.  

William also has strengths—including an exceptional memory. He can identify long-dead people in old family photos. His parents recently overheard him talking about his first preschool teacher, whom he hasn’t seen in a decade. And he eagerly recites the Apostle’s Creed:

AUDIO: [Snippet of William reciting Apostle’s Creed]

He’s also a wiz at puzzles and the card game Uno. But Seth and Melanie are realistic about his many limitations. They are learning to trust God with the unknown.

FOWLER: So I was hoping and thinking that those children that I saw that were pretty high on the spectrum, fairly functional or extremely functional, that that would be William. And in some cases it was, more than not, it wasn’t. And that is just a continuing process to deal with and devastation to deal with.

The Fowlers would love for William to be able to live independently one day, maybe in a tiny house on their property. But with William’s significant needs, he will likely need some professional care his entire life—and that’s expensive.

FOWLER: I have friends who are sending their children, their young adults, to college, and college is incredibly expensive. Well, my son’s never gonna go to college, but you know what, it’s probably gonna cost what college costs for the rest of his life.

As parents of a child with special needs, Seth and Melanie balance a lot: therapy, autism advocacy, and finding time for the occasional date night. They hope someday William will have a greater degree of independence. But their ultimate aim is for William to know how loved he is:

FOWLER: Okay, William, what do I tell you at night? What? Remember? ‘Bless you to’ God. And when God sees William, what does he say? This is good. That’s right. And whose image are you made in? God’s image. You are, and he loves you. He loves you. Okay, good job.

For WORLD Radio, I’m Katie Gaultney, reporting from Weatherford, Texas.

(Photo/Seth Fowler)

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