Susan Pieples <susan@...> wrote:

Date: Sat, 5 Aug 2006 12:10:51 -0400
From: Susan Pieples <susan@...>
Subject: [ASILIST-L] ASA/ASI at work for you
To: ASILIST-L@...

Here are the latest announcements on the Chapter leaders listserv for ASA.
If you are not a member of an ASA chapter, I urge you to join one now (see
www.autismindiana.org ). United we can make a difference, but never forget
that YOUR VOICE is needed.

Susan Pieples
President
Autism Society of Indiana
U.S Department of Education Issues New Rules on Schools and Disabili
Posted by: "Jeff Sell" JZSell@... jzsell
Fri Aug 4, 2006 8:49 PM (PST)

U.S Department of Education Issues New Rules on Schools and Disability
ASA Invited to Discuss Regulations

ASA President and CEO Lee Grossman and new Director of Communications
Marguerite Colston attended a press briefing yesterday unveiling the
Regulations for the IDEA legislation, which was reauthorized in 2004. In a
Significant departure from prior regulations, the Department of Education
Stated that states could not rely on the "discrepancy model" to determine
Eligibility for services, but must look into response to intervention and
Other factors.

ASA has been invited by the Department of Education staff to further discuss
These important regulations. For detailed information on the new federal
Regulations, please visit:
http://www.ed.gov/admins/lead/speced/ideafactsheet.html


[Non-text portions of this message have been removed]


ASA Government Relations - GAO Report Now Available
Posted by: "catriona@..." catriona@... catrionajohnson
Fri Aug 4, 2006 8:49 PM (PST)
Federal Autism Activities: Funding for Research Has Increased, but Agencies
Need to Resolve Surveillance Challenges. GAO-06-700, July 19.
http://www.gao.gov/cgi-bin/getrpt?GAO-06-700
Highlights - http://www.gao.gov/highlights/d06700high.pdf

[Non-text portions of this message have been removed]


CNN Series on Autism "Inside Autism" featured this week.
Posted by: "gammicca@..." gammicca@... gammicca
Fri Aug 4, 2006 8:49 PM (PST)
I just wanted to pass this on to folks. CNN did a story on Autism each day
this week. This is the text below from the final story featured today. If
you visit their website at www.cnn.com/health and click on the "Inside
Autism" link you can pull up the stories and watch all five videos which are
located on the right side of the page in the "Watch the Video" box. Please
if you have the time send CNN a thanks for running this series as well as
any comments you feel are appropriate. It's also nice that they list some I
& R agencies for folks to seek assistance.
Too this will be coming up next weekend for folks:
"What is autism? Dr. Sanjay Gupta explores the developmental disorder in a
special edition of "House Call," Saturday, Aug. 12, at 8:30 a.m. Eastern,
and repeating Sunday, Aug. 13, at 8:30 a.m."

Please pass this on to others.

Best all,
Carolyn

Here at the titles:
Monday: What is Autism?

. Tuesday: Causes of Autism

. Wednesday: Early Intervention

. Thursday: Autism's tolls

. Friday: An Autism Success Story

Inside autism
Mysterious disorder isolates children, families
By Miriam Falco, CNN

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" late Thursday. The House
is expected to take up the measure in the fall, and if signed into law could
provide $900 million over five years to fund more research and provide state
grants to help families with children with autism.

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.


Find this article at:
http://www.cnn.com/2006/HEALTH/07/28/autism.overview/index.html


Government Relations - Combating Autism Act Passes
Posted by: "Catriona Johnson" catriona@... catrionajohnson
Fri Aug 4, 2006 4:49 am (PST)
At just after 11:30 PM last night the Senate assed the Combating
Autism Act. Congratulations everyone! Your almost 20,000 e-mails over
The last week made a difference. An amendment by Senator Coburn
Reduced authorizing funding by $50 million, however the Act still
Represents a $50 million increase in research funding for autism.

Look for more information from ASA in the coming hours and days....

Catriona
Chair, Govt Relations Ctte

"Combating Autism Act" Passes U.S. Senate by Unanimous Consent--Than
Posted by: "Jeff Sell" JZSell@... jzsell
Fri Aug 4, 2006 12:42 PM (PST)

"Combating Autism Act" Passes U.S. Senate by Unanimous Consent
Thank Your Co-Sponsors Today

On August 3, 2006, the U.S. Senate passed S. 843, the "Combating Autism
Act," shortly before recessing. This comprehensive legislation contains many
Important provisions to strengthen autism research, including a renewed
Investment into basic and clinical research, expanded research into the link
Between environmental factors and autism, and continued investigations into
Causation, diagnosis, early detection and treatment for autism spectrum
Disorders.

"The Combating Autism Act is the first disease-specific legislation passed
Out of the HELP Committee in more than six years," said ASA President and
CEO Lee Grossman. "We look forward to working with our Senate sponsors and
Our champions in the House of Representatives to see this bill through to
The President's desk."

The bill now goes to the House for consideration in September. Please alert
Your representatives of this bill and urge them to co-sponsor it. Attend
Your town hall meetings and e-mail them today.

For more information on the bill, visit http://www.autism-society.org/
. For

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