What It's Like Having Williams Syndrome, A Disease That Makes You Trust Everyone

Sunday, June 15, 2014 SPORK! 2 Comments

Terry Monkaba is talking about her son Ben, and the prospect of him finding a job at a Las Vegas casino.

Many parents might feel that way, but Monkaba's anxiety goes deeper. That's because Ben, 28, has Williams Syndrome.

Once called "cocktail personality syndrome," Williams Syndrome — particularly as it affects children — has captivated science writers for the past decade.

In 2008's Musicophilia: Tales of Music and the Brain, Oliver Sacks describes visiting Berkshire Hills Music Academy, where he was immediately received by unusually friendly children.

"They all seemed extraordinarily sociable and inquisitive," he writes, "and though I had met none of these campers before, they instantly greeted me in the most friendly and familiar way — I could have been an old friend or an uncle, rather than a stranger."

Strangers were also the topic of Alix Spiegel's 2010 NPR series on Williams Syndrome, where she told the story of a nine year-old girl named Isabelle. In one segment, Isabelle, who has Williams Syndrome, practices role-playing exercises that teach her the concept of distrust.

"Hello little girl, do you want to see my puppy?" Isabelle's mom practices with her.

"No way," recites Isabelle obediently.

"But my puppy's so cute! Are you sure?" prods her mom, the "stranger."

"Yes," says Isabelle.

"Come over here, I've got some candy too!"

[Sound of internal struggle from Isabelle]

"C'mon, come into my car and I'll show you," her mom tempts.

And with that, after holding out against puppies and candy, it's the offer of companionship that finally breaks Isabelle down. "Ok," she relents, as though she can't help but accept.

But adults with Williams Syndrome have received less attention in the media, partially because their condition predisposes them to diseases that shorten their life span, like diabetes and congenital heart defects, and partially because, as a science writer, children who instantly tell you they love you make for adorable story subjects.

Adults with Williams, however, have a vastly different set of challenges than their younger counterparts. After a lifetime of parents and caretakers constantly watching out for their safety, can they learn how to protect themselves? Move independently in the world? And can they take on that hallowed marker of adulthood: a job?