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It is her calling in life, she explained, to educate people about
the syndrome, so that children today won't feel as she did when she
was a child in Israel. "I was different than other kids – I was
strange, annoying, and no one liked me much, but no one knew
anything about Asperger's, or autism," she explained in her lightly
accented English. Nine months old when her father was killed in the
Yom Kippur War, she was raised with her older sister who, she said,
"was the good one."
Michal would come home from school black and blue. "School was
torture socially and kids bullied me. I couldn't understand the
rules of the games kids played and I wanted them to play by my
rules, so I could win," she said. "When they wouldn't, I'd have
meltdowns."
She knew she was different, she said, from a very early age; over
time, she developed a "mask" to acclimate to and participate in
social encounters.
"Not all people can accept the ‘real me’, and some friendships ended
when people saw me without my mask. I feel much more comfortable at
home than I do anywhere else," she said, adding that her comfort
level ranges, on a 1 to 10 scale, from 10 – at home completely to 3
– in most social settings. There are times, though, when she
desperately wishes she could shuck the mask and simply be Michal
Maoz, without any pretense.
Declining to name her
sons, now 15 and 12, citing privacy issues, Michal explained that
their behaviors were familiar to her. "I felt like an alien, so I
knew something similar was happening for them too."
Michal and Itzik sought evaluations for their older son when he was
six, though it took some time to finally get a diagnosis. "He was
eight when he finally had a name for it," Michal said. "He was
always a difficult child with all kinds of issues, and I knew
something was wrong."
"In Israel, we were told that he was simply gifted and bored;
Michal, with her mother's instinct, insisted that something wasn't
kosher," said Itzik. Speaking of their sons, Itzik said, “Do you
label, do you not- it’s always a conflict, but with the label, you
can help them, and get resources for them in school.”
After the eldest was diagnosed, Michal felt some sense of relief,
knowing that the problem had a name, that others had the same
challenge and that they could receive help from her son's school.
Later, their second son’s same diagnosis reinforced their belief in
genetic connections. "In our minds, there is no doubt that it's
inherited," said Itzik. "We can trace similar traits and habits to
other relatives on both sides of the family.”
After their children were diagnosed, Michal was evaluated and
received the same diagnosis of Asperger's, though her condition was
more difficult to assess, as she'd adapted more to societal norms.
"I decided to change myself so people would like me more, so I
learned how to laugh at jokes that I didn't understand and how to
pretend to make eye contact with others."
It’s a conflict between the ‘real me’ and my mask, she added. ”I
want people to know the ‘real me’, but it’s scary- will they like
me?” She even worried that her husband might not be able to accept
her. Yet, Itzik described their encounter [ they were both in the
Israeli army] as love at first sight: “She was open with me and we
started talking right away. I liked the way she expressed herself
and her honesty; we found each other like soul-mates,” he said.
Today, MIchal crusades to save others affected by Asperger's,
through her creative outlets - paintings, jewelry and her book of
poetry,
The
Alien in Me, Poetry by a Person with Asperger's Syndrome
(in
English, not Hebrew), available at Barnes & Noble, Amazon and on her
website,
www.aurtistic-spectrum.com
Michal, who aspires to be on The Oprah Winfrey
Show one day, explains that a diagnosis of Asperger's syndrome
is not the end of the road. "So many doctors predict grim outcomes,
but it doesn't have to be that way," she explained. "I want to give
people a message of hope.”
“My mother never thought I'd be independent, publish a book [a
life-long dream for Michal], work or get married, and now, I'm 35
and I've done all these things," she said proudly. If I can do these
things without having had support or resources when I was young,
Michal said, just think about what kids today, who can access help,
can do.
"I've been writing poems since I was seven years old," Michal said.
As an emotionally intense book, it's not easy to read, she said, but
it offers a message of hope. ”A lot of people think that people with
autism or Asperger's don't have or show emotion, but that's not
true. I want to show everyone how we feel and why we act the way we
do."
"Knowledge is power," said Michal, who manages a website,
www.aurtistic-spectrum.com
; the self-created word “aurtistic” reflects her desire to educate
people about autism and Aspereger’s through her artistic creations.
More comfortable communicating electronically than face-to-face,
Michal created
www.cafemom.com/group/asktheaspie,
a chat room with some 400 or so subscribers who exchange information
and seek out her expertise on Asperger’s for themselves or their
children. “Aspie”, Michal explained, is a label that many with
Asperger's affectionately apply to themselves.
Although Michal experiences a fair amount of anxiety and discomfort
in any social setting, she puts herself out there as part of her
mission of education. So, If and when Oprah calls, she won't let
stage fright get the better of her.
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