Click here: CNN.com - Inside autism - Jul 31, 2006

What is autism? Dr. Sanjay Gupta explores the causes, the tolls the
disorder
takes on families and shares success stories in a five-part
series, "Inside
Autism," airing every day this week on American Morning, 7 a.m.
Eastern.
Inside autism
Mysterious disorder isolates children, families
By Miriam Falco, CNN

Monday, July 31, 2006; Posted: 11:32 a.m. EDT (15:32 GMT)

Autism. It's a word more often heard these days. But what autism
actually is
is probably less understood by the average person.
For someone who may not have met a child with autism, the closest
reference
to what it is may come from the 1988 movie "Rain Man," where Dustin
Hoffman
is rocking and counting toothpicks.
However, when you meet some of the children who have autism, that's
not what
you see.
Wendy Stone, a longtime autism researcher, says autism is "really the
absence of behaviors. It's not the presence of unusual behaviors,
like
spinning or hand flicking ... which a lot of people look for."
Moreover, there's no one type of autism. There's no one treatment to
help a
child with autism -- no pill, no cure.
The cause is still a mystery, but one that scientists have been
unraveling
more in recent years.
What is autism?
So what is autism? Autism falls under an umbrella of disorders
called
pervasive developmental disorders" (PDD) or autistic spectrum
disorders
(ASD).
"Autism spans a range of symptoms ...a range of degrees of symptoms
so that
one child with autism, or an autism spectrum disorder can be very
different
from another child," says Stone from Vanderbilt University's Kennedy
Center
for Research on Human Development.
According to the U.S. Centers for Disease Control and Prevention, 1
in 166
children is born with autism. Boys outnumber girls 4 to 1.
Most experts, doctors, therapists and researchers believe children
are born
with ASD, a brain disorder that leads to difficulties in social
interaction,
communication and behavior. Parents are experts, too, because they
live with
autism every day, for the rest of their lives.
Chicago speech therapist Sharon Rosenbloom, also the mother of 18-
year-old
son Joey with autism, puts it this way: "People with autism do not
experience the world as others do."
If you don't have a child with autism, it may be difficult to
imagine.
A 12-minute video, posted on the Web site of organization Autism
Speaks will
give you a glimpse into that world. (Autism Speaks)
One mother describes her situation: "I didn't choose this. I was
drafted. I
have an autistic child."
Other mothers describe how people with "typical" children don't
understand
what families with autism go through.
"They have no idea," says another mother in the video. Another says
she
knows she can't live forever, but fears "what happens when I'm not
here?"
Researchers have broken pervasive developmental disorders or autism
spectrum
disorders into five categories.
The most common diagnoses are autism, Asperger syndrome and pervasive
disorder-not otherwise specified (PDD-NOS). The two other disorders:
Rett
syndrome and childhood disintegrative disorder (CDD), are more rare.
According to the National Institute of Mental Health "autism spectrum
disorders are more common in the pediatric population than are some
better
known disorders such as diabetes, spina bifida or Down
syndrome."National
Institute of Mental Health
Getting the diagnosis
Parents of children with autism are experts too because they live
with the
disorder 24 hours a day.
They are also usually the first to notice something's wrong. Often
parents
are told to wait.
Getting the diagnosis is difficult. Jessica Bates from Prattville,
Alabama,
has two children with ASD.
Her first child's diagnosis, she says, "was probably the most
devastating
thing I've ever been through in my entire life."
For Cindy Pike of Lawrenceville, Georgia, learning that her child
had autism
was hard, but getting the diagnosis was almost a relief. "It was so
obvious
to me for so long that there was something wrong... To have a name
for it so
that I could help. Then the frustrating part of 'What do you do
next?'"
Cindy's not alone. When parents learn their child has autism, they
have to
figure out how to help him or her.
Tommy Bates describes trying to find a treatment for his
child: "There was
so much information -- it was so hard to process all the
information, so I
was dizzy and I remember being shocked by all that."
What's a parent to do?
Most everyone will agree that the best way to help a child is
through early
intervention because it can change the way the brain develops.
That means getting a diagnosis as early as possible is essential, so
a child
can begin therapy early.
However, there's still no test for autism. The child will need
therapy, but
what kind? What works for one child doesn't necessarily work for the
next.
And, what may be most surprising to outsiders, a child with a
behavioral and
brain disorder gets the majority of his treatment via the education
system,
not the medical system.
What does that mean? In most cases, the school system is responsible
for
providing the necessary behavioral therapy for the child.
That's where the parents' search for their child gets more
difficult. Some
schools don't have the ability to provide many different types of
services.
Experts say children with autism need to be given proven therapies
to serve
their needs. Too often, children have to take what they can get.
Susan Smith, who has a son with severe autism, moved from one county
in
Georgia to another, so her child would get better care. She believes
her son
"shouldn't be penalized for having a disability."
Parents of children with autism often have to look for outside
resources to
get their child's needs met.
In some parts of the country, there just aren't enough therapists to
help
the growing number of children with autism. When parents do find
someone who
can help their child, insurance often doesn't cover it, so they have
to pay
for it themselves.
The search for more information
No two children with autism are the same. Sadly, many parents share
common
experiences when trying to find the proper services.
When ordinary services fail, they find their own ways and their
frustration
leads to sharing what worked for their child with others, in the
event it
may help another child.
Susan Ellis from Marietta, Georgia, is just one of many such
parents. Her
son Ryan couldn't learn how to write.
Along with his occupational therapist, Marnie Danielson, Ryan's mom
created
a video using chants and it worked for him. Like many parents, she
shares
her success because it may work for another child with autism. She's
made
her videos commercially available via her Web site. (Alpha Beats)
Robert and Suzanne Wright are the grandparents of a boy with autism.
They,
like many other families coping with autism, were frustrated with the
options for their grandson and the many other children with ASD.
Not everyone has the resources and clout to reach a lot of people.
But
Robert Wright is the chairman and CEO of NBC Universal. He and his
wife
founded Autism Speaks in 2005 for the purpose of finding a cure for
autism,
according to the Web site. The video on the Web site provides a
unique
perspective of the difficulties families face when coping with
autism. The
site also provides a lot of information for those eager to learn
more about
autism.
What's next?
The U.S. Senate passed the "Combating Autism Act" on July 19.
Proponents of
the law say it will increase resources in every state for early
diagnosis
and treatment, which to many is the most important thing that could
happen,
short of a cure.
Researchers are studying children with autism as well as their
siblings to
learn more about the genetic component.
They are learning more about what parts of the brain are not
communicating
as well as they do in "typical" children.
More needs to be learned about what environmental factors may
influence or
trigger autism.
And if children are born with autism, how can they be tested for it?
Many questions are still unanswered. More funding is needed for the
research
and new therapies to help these children.