Jackie Marino remembers her daughter Grace counting the
days until her first day of first grade.
"I have a picture of her. She was about to get on the bus, and she was
beaming. She couldn't wait to go to school," says Marino, a veterinarian from
Fort Salonga. "I frequently look at that picture and say she went to school
that day and she came back a different kid."
At home, Grace was outgoing, funny and bossy to her little sisters. It was
just the opposite at school: She was withdrawn, her face a blank stare. She
didn't utter a word to anyone. "It was almost like two different people,"
Initially, Marino says, she thought her daughter was suffering from shyness
and she'd eventually outgrow it. Then she went with Grace to school and sat in
her classroom, hoping it would put her at ease. "She wouldn't even speak to me
inside the school building," Marino says, "and she had this look of terror on
A school psychologist suggested Grace might have a social anxiety disorder
called selective mutism, a little-known, oft-misdiagnosed condition that
experts believe causes children to be able to talk in some settings and unable
to in others. "I started reading about it, and it fit her to a T," Marino says.
Children who have selective mutism, or SM, have the ability to speak and
communicate at home and in other situations where they feel safe and
comfortable. Their anxiety kicks in most often at school and in other places
where they feel they're expected to talk and interact with others. Some freeze
up, their bodies stiffen, their faces go blank, and they avoid eye contact.
While the cause is unclear, experts say many children and teens with SM
have a genetic predisposition to the disorder, and some also may have other
underlying problems, such as speech and language deficiencies, subtle learning
disabilities or difficulty processing information.
"This is a disorder like ADHD [attention deficit hyperactivity disorder]
director of the Selective Mutism Anxiety Research and Treatment Center in
Jenkinton, Pa., and the mother of a child who had SM.
Shipon-Blum and other experts who work with children with selective mutism
say the disorder is more common than autism - one study says 7.1 in 1,000
children have it - but many parents, educators and physicians are only
beginning to learn about it.
Because of that, Shipon-Blum urges parents to educate themselves about SM
before going to their family physicians. "So few doctors and therapists
understand this, so get your information first," she says.
Marino says she took Grace to several doctors. One was stumped, she says,
but indicated she might be responsible for her daughter's condition. Another
said selective mutism was "B.S.," and a third said she would outgrow it.
After Grace's first-grade year, Marino attended a conference and learned
about Marian B. Moldan, a clinical social worker who had had selective mutism
as a child and for the past 20 years has been treating children with the
Moldan, who lives in Miller Place and has an office there and in Syosset,
says having SM "was like the fear of standing on the edge of a diving board and
that moment where you're not sure if you're going to jump off or not jump off,
and being stuck in that limbo forever."
"The children want to speak," she says, "but it's that incredible torturous
limbo, and it's awful."
Laurie Sciscente's son Jack was in nursery school when he was diagnosed
with SM at 3.
"At home he was funny and talkative. If friends he'd never met or the
mailman came to the house or a few family members, he would close down around
them. No eye contact," says Sciscente, a physical therapist.
"He didn't like going places," she added. "If strangers started talking to
him, he would just look at the floor. He started not being able to be verbal
with me at all. He had a fear of going to school. I had to pull him into the
car, kicking and screaming."
After being observed in the classroom and having his speech and hearing
tested, a special-education teacher and a social worker came to their Garden
City home to work with him.
Jack made progress gradually. When he started preschool at 4, he avoided
eye contact with his teachers, had rigid movements and very little facial
expression. As time went on, he began speaking to four or five classmates but
not to his teachers. Then he started talking to a few of his teachers, but only
out on the playground, not in the classroom.
Jack is in first grade now, and talks to every child in his class, his
mother says. "He's the mayor of the class," she says, chuckling. "He is not
verbal with his teacher, but he'll raise his hand and he'll nod his head. He
whisper-reads when he is in a group. He sings in music class."
One highlight of the school year was that Jack had two lines in a play. "He
said them loud and clear," Sciscente says. "It was really an amazing moment."
She urges parents to be supportive and patient with a process that can be
long and arduous.
While there are different approaches to treating SM, including the use of
medication, experts say the ultimate goal is to determine why a child becomes
selectively mute and then find ways to help lower the child's anxiety, build
their comfort level in social settings and move them from nonverbal to verbal
Left untreated, many children become less social and more isolated with
age. Shipon-Blum says some children will learn enough coping skills to get by
but others won't. "A percentage of them don't get over this at all," she says.
"It affects their self-confidence, their academics, and some [who have it as]
adults live a life of isolation."
That thought concerns Patricia Smith of Harlem, who says her daughter
Kashondra was speaking in complete sentences at 8 or 9 months, but by age 2
stopped talking to everyone else but her.
Now in fourth grade, 9-year-old K.K., as she is called, has developed ways
of coping without speaking in school, her mother says. For instance, she will
mouth the words "yes" and "no" in response to her teacher's questions.
Smith says she doesn't want her daughter to lose out academically or
socially because teachers and others perceive her as being too shy, or worse,
defiant or stubborn.
K.K. used to make A's and B's, but she's now making B's and C's, her mother
says, because her teachers are "so caught up in her talking."
"It hasn't stunted her in learning as of yet, but as she gets older, she
could be left behind," she adds. "I just don't want her to miss out on
That's why last month she gathered with about 180 other parents, educators
and clinicians inside a hotel meeting room in Hauppauge for Shipon-Blum's
one-day SM conference - and also paid for a teacher from her daughter's school
Treating selective mutism requires a team approach involving the child's
parents, classroom teacher, and other school staff, such as a psychologist,
social worker or specialist in speech and language development, says Dolores
Binstock, a licensed speech pathologist with the Sachem school district and
chairwoman of the district's Committee on Preschool Special Education.
Binstock urges parents to contact their child's school district and request
an evaluation to examine the child's medical and social history, observe his
or her demeanor in the classroom and pinpoint whether he or she has any speech
and language deficiencies.
Different schools and districts offer different services, she notes, so
parents often may have to find outside help from a psychotherapist or physician
who is trained to work with children with SM.
"The goal is to reduce the level of linguistic demand so it isn't a
high-anxiety situation for them to produce a response," she says.
If you focus too much on trying to get them to speak, "it can backfire,"
she adds. "Given the right support and strategies, they can successfully
Jonathan Berent, a psychotherapist who lives in East Hampton and has a
practice in Great Neck, has been working with people with social anxiety
disorders since 1978. He says parents, not therapists, have the most important
role in helping their child overcome SM, which he calls "an addiction to the
avoidance of speaking."
"We know the child can speak. The child does not speak in specific
situations. That's a form of avoidance. In order to avoid, the person has to be
dependent. The child is dependent not only on the parents' doing the talking
but a lot of the thinking and problem-solving for the child. So it really
cripples the child's initiative."
Berent says he works with parents to find ways to help their children
control their anxiety and confront their fear.
"You do not want to pressure the child to speak. You don't want to reward
the child for speaking," he says. "You want to set up a matter-of-fact and
supportive system of expectations that will restructure the child's attitude
and mode of thinking. For instance, if they want the snack, they have to try to
ask for the snack. ... If you get them to try, you've accomplished 50 percent."
Shipon-Blum encourages parents to talk to their children about how they
feel. Since children with SM don't speak at school, they are prime targets for
bullying and may go all day without telling their teachers or others when they
need to go to the rest room or if they're sick or hurt.
Marino says Grace, who sat and stared and wouldn't participate verbally in
her first-grade class, gradually started participating, though not speaking, in
second grade. That same year, a teacher at Grace's school began coming to her
home to tutor her once a week after school, with the focus on her schoolwork,
not on her talking. The next year, that tutor became her third-grade teacher.
"Now she speaks to the teacher at her desk and whispers to everybody," says
Marino, who has involved her daughter in basketball, soccer, jujitsu and other
activities to boost her self-confidence.
"I want to do things to make her comfortable enough that she can speak to
anybody, anytime," Marino says. "And it's going to be in her time."
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For more information on selective mutism, a sampling of resources:
Jonathan Berent, a psychotherapist, Berent Associates, 17 Maple Dr., Great
Neck, NY 11021; 800-248-2034 or 516-872-9383; www.socialanxiety.com. Co-author
of "Beyond Shyness: How to Conquer Social Anxieties"
Marian B. Moldan, a clinical social worker, Syosset Medical Arts Building,
Suite 202, 50 Underhill Blvd., Syosset, NY 11791 and 185 Miller Place Rd.,
Miller Place, NY 11764; 631-331-8759.
Dr. Elisa Shipon-Blum, president and director of Selective Mutism Anxiety
Research and Treatment Center (SMart Center), 505 Old York Rd., Jenkinton, Pa.
19046; 215-887-5748. www.selectivemut ismcenter. org. Author of books,
including "Understanding Katie," a storybook for children 3 to 12 with
selective mutism and/or social phobia, and "Easing School Jitters for the
Selectively Mute Child." Also founder of Selective Mutism Group - Childhood
Anxiety Network, www.selectivemutism.org Selective Mutism Foundation Inc.,
www.selectivemutismfounda tion.org - Pat Burson