Fw: Why Abby Won't Talk - Time Magazine

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Why Abby Won't Talk - Time Magazine

(Time's index says:

P56 Shy kids may suffer from a disorder more common than autism)

Why Abby Won't Talk

She has a condition called selective mutism that is neither as rare

nor as hopeless as experts believed. But the right help is hard to

find

By WENDY COLE / PHILADELPHIA

Sunday, Jan. 29, 2006

Abby ' hand shoots up nearly every time her teacher asks the

19 squirmy first-graders in her suburban Philadelphia public school

to match letters of the alphabet to the sounds they make. Sitting up

front with her pinchable cheeks framed by long blond hair, Abby, 7,

looks as eager as any of her classmates to blurt out an answer. But

every time the teacher calls on her, Abby freezes. Her face

tightens. She strains to respond. And even if an answer manages to

get past her lips, her words are inaudible. She's effectively mute

throughout the school day--even at recess, where the closest she

will come to open communication is words whispered to a trusted

girlfriend.

At home, however, Abby is a different child. She loves to play cards

and board games and frolic with her brother Jack, 5. " She speaks

loudly--sometimes too loudly--and can be bossy toward her brother, "

says mother , who runs the trading desk at a money-

management firm. Abby is, in every other way, a perfectly normal

child who has no shortage of extracurricular activities, including

horseback-riding lessons and dance classes that she's been attending

since she was 4. " Performing in public is fine, " says her

mother. " She likes people to look at her and applaud. "

So why doesn't she speak up in class? What may at first glance look

like shyness or obstinacy is actually something far more complex--

and much more interesting. Abby, like hundreds of thousands of kids

across the U.S., is suffering from a little understood but

increasingly recognized childhood disorder called selective mutism.

The key to selective mutism, or SM for short, is the seemingly

incongruous behavior Abby exhibits: voluble in private, silent in

public. According to the official psychiatric diagnostic manual DSM-

IV, a child who has developed normally at home but has not talked at

school or in other social situations for at least a month is a

strong candidate for a diagnosis of SM. Experts once believed that

fewer than 1 in 1,000 kids developed the disorder, but an

influential study three years ago in the Journal of the American

Academy of Child and Adolescent Psychiatry put the prevalence at

closer to 7 in 1,000, making SM almost twice as common as autism.

SM can strike at any age, even among children who once talked in

public, but it usually becomes obvious by age 3 or 4, when peers are

happily jabbering away. About 30% of kids with SM also have a

developmental speech impairment, which can exacerbate the problem

but is generally not the cause. In the past doctors often

recommended speech therapy, but treating the physical or

neurological issues alone will probably have little impact on the

underlying psychological factors behind SM.

The root of the problem in most cases is an extreme form of social

anxiety or phobia. " It is a fear that can literally make it

impossible to speak, " says Dr. Shipon- Blum, a Philadelphia-

based clinician who specializes in treating selective mutism. As

with most social anxieties, SM is more common in girls and is

believed to have a strong genetic component. About 70% of kids with

SM have an immediate family member who also struggles with social

anxiety.

Compared with childhood disorders in which children are disruptive

and disorderly-- such as attention-deficit/hyperactivity disorder

(ADHD)--selective mutism gets less attention and considerably fewer

research dollars. " These children are ignored because, let's face

it, they aren't causing anyone trouble. They are literally left

alone and forgotten about, " says psychologist Lindsey Bergman,

associate director of the UCLA child and adolescent OCD [obsessive-

compulsive disorder] and anxiety disorders program.

But that's changing, thanks largely to specialists such as Bergman

and Shipon-Blum. Trained as an osteopathic family physician, Shipon-

Blum had a pressing personal interest in the condition. Finding

almost no good research on the subject, she had to resort to trial

and error in order to help her daughter Sophie, now 11, overcome a

paralyzing mutism. Today Shipon-Blum runs an SM clinic with a two-

year waiting list and travels the U.S. speaking in hotel ballrooms

packed with concerned parents, teachers and clinicians. She also

founded the nonprofit Selective Mutism Group--Childhood Anxiety

Network, which has become the major national advocacy group for SM.

The group's website, selectivemutism.org gets 450,000 hits a month,

and its call center hears from several hundred people a week seeking

treatment or information.

Shipon-Blum's treatment approach involves a range of cognitive-

behavioral techniques aimed, at least at first, at increasing

nonverbal interaction. In her office in Jenkintown, Pa., wedged into

a strip mall along with a Dunkin' Donuts and a beauty salon, Shipon-

Blum has taped colorful Popsicle sticks together into a pointer, and

kids use it to respond to questions by indicating either a YES card

or a NO card. The amount of homework Shipon- Blum assigns surprises

many parents. When shopping with their parents, for example, kids

are encouraged to hand the money to merchants. And in restaurants,

children are supposed to give their order to the waiter by pointing

out what they want on the menu, rather than have parents do the

talking for them.

Young children with SM may be expected to have a playdate with the

same peer every week, whether or not the child speaks to the

friend. " We have to build them up inside before we even talk about

talking. I need to give them back control within themselves, " says

Shipon-Blum.

The treatment is a marked departure from what until quite recently

was standard practice in the field. Many doctors either offered

parents hopeless-sounding diagnoses, such as autism or mental

retardation, or dismissed their concerns as neurotic, telling them

that their children would simply grow out of it. That message

infuriates specialists like Shipon-Blum, who agrees that children

with untreated SM may eventually manage to communicate in social

situations but insists that without addressing the precipitating

factors behind the mutism, debilitating anxieties are likely to

persist into adulthood. " They may develop methods of coping, but are

they happy and functioning? " she asks.

It was a subtle semantic change in the official diagnosis of this

form of mutism that helped change doctors' perceptions, says Dr.

Bruce Black, a psychiatrist in Wellesley, Mass., who conducted some

of the first empirical studies on SM in the early 1990s. Until about

15 years ago, children were routinely considered to have " elective

mutism, " which suggests the silence is willful and controlling. " It

was seen as a power struggle that manifested as a refusal to speak, "

says Black. " Now it is characterized as a failure to speak. "

Another popular misconception was that students with SM suffered

from emotional or physical abuse and that their silence stemmed from

an effort to keep the trauma secret. " That was presented as fact

until the late 1980s, " says Black, " even though there was no proof. "

There is still a dearth of scientific literature in the field, he

says, in part because the people in the best position to offer

insights into the disorder's crippling effects--the affected kids--

have so much difficulty communicating.

Abby joined Shipon-Blum's waiting list last fall, and her

parents are buoyed by the hope that they have finally located

someone who understands their perplexing daughter--even if they have

to wait another year or more for help. " Her preschool teachers

ignored the situation and just thought she was timid, " recalls .

When Abby was 3, a well-meaning speech therapist taught her sign

language, but her fear of speaking in public didn't go away. Friends

tried to make feel better, telling her that Einstein didn't

talk until he was 7, but she still felt helpless and so guilt-ridden

she was ready to believe almost anything. Says : " Abby was an in

vitro baby, and I wondered if that had something to do with it. "

But feels even worse about the emotional agony her daughter

must go through every day. " When someone outside her immediate

family compliments her on her pretty dress, she looks at the ground

and clenches her fists, " says . And because Abby couldn't tell

her teachers that she had to go to the bathroom, she used to be very

worried about having accidents at school.

But in Kim , her first-grade teacher, the child has found a

sympathetic ally. The teacher periodically sends small groups of

children to the bathroom together, alleviating Abby's stress about

asking for breaks. And rather than lose patience with Abby for the

false starts, she praises her for trying. Indeed, the most striking

thing about the well-managed classroom is what this perpetually

smiling teacher doesn't do: she doesn't command Abby to speak up,

nor does she stop calling on her.

It's an approach that seems to be paying off. When a photographer

from TIME showed up to take her picture in class recently, Abby not

only worked out the answer to an arithmetic question but also

accomplished something she has just started to do: she shared it out

loud, in her own quiet but unwavering voice.