Pinning down the puzzle of autism
December 14, 2006
By DEBI BOUCHER STETSO
Autism is a puzzle, one that researchers have yet to solve. Like
mismatched puzzle pieces, children with autism have a hard time
fitting in a world that doesn't understand them.
 One
local mother has taken the international symbol of autism - the
puzzle piece - and turned it into a pin she hopes will both increase
autism awareness and raise money for the school her son attends.
Lauren Jones, of Orleans, has
designed and created a pin using painted puzzle pieces that she is
selling for $5 to benefit the Boston Higashi School, in honor of the
school's anniversary.
''I wanted to do something to
recognize the 20th anniversary of his school,'' she explains, ''and
I wanted to find a way to put the world of autism out there, because
the incidence has grown so much over the past 10 years.''
Autism is a ''complex
neurobiological disorder'' that is diagnosed in one out of every 166
people, according to Autism Speaks, an international nonprofit
dedicated to autism research. Four times more likely to strike boys
than girls, autism impairs the ability to communicate and relate to
others and is associated with rigid routines and repetitive
behaviors. As yet, there is no known cause.
Lauren Jones created the autism puzzle
pin as a way
to raise awareness of the disorder and funds for her
autistic son's special school, the Higashi School,
located in Randolph. (Staff photo by Steve Heaslip)
Boston Higashi School, located in
Randolph, takes an innovative approach to the treatment of autism,
using ''Daily Life Therapy'' that promotes a full education rather
than focusing on deficits. The original Higashi School in located in
Japan.
''The philosophy of his school is
very different in that they don't use any medication. Instead, they
use rigorous exercise,'' Jones says, noting her son, Alexander, now
18, jogs a mile and a half a day. ''They also use art and music.''
Lauren and her husband, Bob, who
have a psychotherapy practice in Orleans, made the difficult
decision to send Alexander to the residential school six years ago
after his autism became too much to handle. Although it was a
wrenching decision, Alexander is thriving there, his mother says.
''It has been our lifesaver and our son's,'' Jones says. ''He has a
life, and we have a life.''
''The Puzzle Piece Project,'' as
Jones has dubbed the pin, is her way of giving back.
The pin Jones designed, simple but
time-consuming to make, consists of three puzzle pieces, each
painted a primary color, glued together, with the largest one on the
bottom. She says she hopes school, church or community groups will
begin making them as service projects.
Jones buys used puzzles at thrift
shops, covers the pieces with two coats of red, blue or yellow paint
and connects them with Crazy Glue before attaching a pin backing.
She has set up a kind of assembly line in her garage and has
completed several hundred so far.
''One of the things about the
low-tech nature of it is I have touched every single piece, and that
has great meaning for me,'' she says.
She chose primary colors ''because
all the colors come from those colors,
and that speaks to the very nature of autism and all the different
combinations. I love the fact that these are all a little
different,''
just as no two cases of autism are the same.
Jones is looking for local shops to
carry the pins, each of which comes
with a message about autism.
As the information included with
each pin notes, autism is a ''spectrum
disorder,'' with symptoms ranging from mild to severe. Included on
the
autism spectrum, according to Autism Speaks, are Asperger's
Syndrome,
Pervasive Development Disorder, Rett Syndrome and Childhood
Disintegrative
Disorder.
Alexander has a relatively severe
form of autism. He cannot speak and
needs help with basic things, like dressing.
But, Jones notes, ''He's very
sweet, very engaging and quite social.''
She says he has a ''great sense of humor, and I have to remember
that
underneath the autism is a great temperament and personality. It's
like a
layer on top of it.''
Like many autistic people,
Alexander is obsessive, a trait that has led his
family on some interesting adventures. For the past couple of years,
his
primary obsession has been car washes, and his parents have traveled
throughout New England and beyond to visit different ones.
''We've met some of the nicest
people,'' Lauren says, explaining that when car wash owners hear
about Alexander's fascination, they usually do all they can to
accommodate him.
''So we spread the word about
autism at car washes,'' his mother says, smiling.
Jones says there is a much greater
awareness of autism now than when Alexander was little. ''More and
more people are being touched by autism, either in their immediate
family or in their social circle.''
She's encouraged that a bill to
fund autism research has been passed by both the House (Dec. 6) and
Senate (Aug. 3) and has now returned to the Senate for review. The
Combatting Autism Act would put $1 billion over the next five years
into research, screening and early intervention.
Advocates are hoping that, if it
passes, it will go far in solving the puzzle of autism.
(Published: December 14, 2006)
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