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Wednesday, December 25, 2013

Selective Mutism: How A 6-Year-Old Was Finally 'Cured' of Her Anxiety Disorder

From The Huffington Post

By Catherine Pearson
Catherine.Pearson@huffingtonpost.com

December 17, 2013

For weeks after she started preschool, Alvin Asencio, 27, and his wife Krystal, 28, thought their daughter, Kailee, was just battling typical shyness and nerves. Though the 3-year-old was relatively chatty with them, she would not speak to her teachers or classmates.

"[My wife] told me, 'Al, there's something wrong," Alvin said. "I was kind of in denial, not in an egotistical kind of way; more of, 'She's fine, she's so smart. It's just a phase or something.'"

Kailee struggled to speak in front of anyone but her parents
due to an anxiety disorder called selective mutism.

But weeks turned into months, months turned into more than a year, and Kailee remained painfully quiet in school, as well as with friends or family she did not know. In class, she would sit by herself drawing detailed pictures -- of faces she saw around her, or how she was feeling that day.

Kailee expressed interest in going to her classmates' birthday parties, but she refused to play with the other guests when she arrived. She loved the playground, but would keep largely to herself. At her family's home in Brooklyn, N.Y., she would talk with her parents, but only if no one else was watching.

Relatively early on, Kailee's parents had her evaluated, and the results suggested she had a speech impairment. "I knew she didn't," Krystal said. "But because she wouldn't talk in front of the evaluator, or the speech therapist, they assumed that."

"It became really frustrating for us at that point," Alvin said. "It's not that she was a genius, but she was very well-spoken ... She was going to get all these special services at school, [and we knew] she didn't need them. Those services could've gone to another kid that really did."

But despite expressing frustration to experts, there seemed to be no other options for the family. The couple was willing to try anything, so they dutifully took Kailee to speech therapy, and hoped for the best.

Eventually, one cherished therapist, whom Kailee saw for more than a year and was the only expert able to get her to even whisper, mentioned The Child Mind Institute, a mental health practice in New York City. It was enough to start the parents on a search. They called, made an appointment, and in one session, got more answers than they'd had in years, Alvin and Krystal said: Their daughter, who will turn 7 next month, had selective mutism.

Selective mutism is an anxiety disorder, characterized by a child's inability to speak in certain settings and to certain people. Children or adolescents with selective mutism (estimates suggest it may be most common in those 5 and under) understand language and are able to speak, the Selective Mutism Group explains, but "demonstrate a persistent inability" to do so.

Like so many disorders, there is no one clear test for selective mutism, or "SM" as it's sometimes called, and parents like Alvin and Krystal often spend years hunting for answers and help for their children.

"By the time kids are seeking help for this, they have gone literally years without talking to a peer or teacher," said Steven Kurtz, a clinical researcher and child psychologist with The Child Mind Institute, who added that doctors often hypothesize that the children are simply being willful, or that they have autism.

Kurtz estimates that the issue affects about 1 in 140 young children in the U.S., primarily those ages 4 to 7. Because it's relatively rare, he said, many clinicians have not seen or treated a child with SM. "Until I had one, I had never seen or heard of it in my training. Most of the people I train in [treatment] have never seen a kid with SM before," Kurtz said.

The Child Mind Institute prides itself on being one of the few places in this country that specializes in the diagnosis and treatment of selective mutism, including options for families who are not in the New York City area. "Brave Buddies" is a cornerstone of its treatment program -- an intensive behavioral intervention designed to help children speak in school and in other social situations. Last August, Kailee attended a week-long, 30-hour program in a simulated classroom, where she was led through social interactions of increasing difficulty.

"We've counted the number of times that school-age children [with SM] will avoid opportunities to talk -- it's about two times a minute, which yields about 133,000 times per school year. Imagine you practiced playing your scales wrong 133,000 times per year ... you get very good at doing it wrong," Kurtz explained.

"What we do is take these six hours a day, five days in a row, and we do what's called 'over-learning.' We practice over and over and over again all the things that these kids have been avoiding." Every child participates in saying what the weather is, for example. Every child does show-and-tell. Every child does an expert presentation. Parents are also trained, daily, in reinforcement methods and games that facilitate "brave talking."

For their part, Krystal and Alvin believe that just one week with the Brave Buddies program effectively "cured" their daughter. (Kailee also takes a very low dose of an anti-anxiety medication.) Every day she was doing something she had never done for years," Alvin said. "She would tell me, 'I ordered an ice cream today! ... I asked for sprinkles, and syrup, and whipped cream' ... She was just a different person."

Kurtz agreed that Kailee has been "cured" through the short treatment, though he cautioned that her outcome is unusual. "The typical kid has had some treatment with us before that week, and after that week, and may or may not be combining it with medication," he said.

But while Alvin and Krystal are aware that there is always a chance their daughter's issues will return, they're very hopeful about her future. They said they're thrilled by how happy she now seems, having been freed of what was an enormous burden. "She's super chatty, talkative ... she's really confident," Alvin said."She ran for library monitor. She had to do a presentation and a campaign."

"And she won," Krystal said. "She won!"

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