What is a
Parents of newly diagnosed children with autism run into a
massive amount of new words and terminology that most parents didn't know
existed. A stim is also known as a self-stimulatory behavior; that is a
behavior that is done repeatedly that does not serve any other purpose
beyond sensory gratification. For example, a child might stim with his
hands by flapping them. Another stim may be to watch a video fast-forward
(that's a visual stim). Or they may line up objects across the table or
According to Ron Leaf & John McEachin in the book A
Work in Progress, most people will engage in various forms of
self-stimulation, be it day-dreaming or tapping their foot, twirling their
hair or playing with a pencil. The difference, however, is that the
typical person is able to continue attending and the self-stimulatory
behavior is usually more subtle and not as inappropriate
Why do our children stim? Several reasons mentioned in
A Work in Progress are
as follows: People with autism often do
not find people or the environment interesting…when bored or simply
unoccupied…they often prefer to engage in self-stimulation. Another
possible function of self-stimulation is to reduce frustration and
stress…[stimming] appears to soothe as well as block out the source of
You can read more about self-stimulatory behaviors and
procedures to reduce them in chapter seven of
A Work in Progress by Leaf & McEachin, published by DRL Books, New
The 40-page monthly
autism newsletter, LOOKING UP features an in-depth, up-to-date analysis of
both sides of the debate over the MMR vaccination; a special section on
living with Asperger's syndrome; Autism and the Arts - autistic actors
take centre stage in Germany, France, Spain ... Ten Laws of Success for
Children with Autism; What is G-Therapy? Why did the co-inventor of the
laser move to California (clue: he had an autistic daughter). Education:
New York State officials anger therapists over the "right" approach to
autism. PLUS: all the latest research news and views from around the
world. For more information, check out: http://www.feinst.demon.co.uk/looking-up.html
FEAT DAILY ONLINE NEWSLETTER
Anthony Edwards Testifies before
["ER" TV Actor Anthony Edwards testified before the
Senate Health, Education, Labor and Pensions Committee, Thursday,
September 16, in support of legislation to commit funding to autism
research. Below is a transcript of his testimony]
Because of ER, I
have experienced something I believe all of you can relate to. Being in a
position where 100's and 100's of worthy causes attempt to solicit your
support. By way of this testimony I think it will be clear as to why I
have dedicated myself to this issue: Autism. I
am speaking on behalf of the 400,000 families in the US, and in particular
for the hundreds of families I have come to know as I have worked with the
Cure Autism Now Foundation over the past 2 years.
Here are the statistics, the dry stuff that isn't
supposed to make you cry. Autism affects at least 1 in 500 kids. That's
more than Multiple Sclerosis or Downs Syndrome or Cystic Fibrosis. That's
at least 400,000 people in the United States.
It strikes children
generally between their first and second birthdays. These kids will live
as long as you or me. But their parents will not be experiencing slumber
parties, graduations, and weddings in June. Half these kids will never
learn to talk. Most will not marry or go to school. They will never live
independently. Many will end up in institutions or group homes.
We're not sure if there's a real epidemic or if it's
better reporting, but we do know that there are so many more families
affected by autism than we realized. In California, where I'm from, the
Department of Developmental Services reports a 263 percent increase in
autism in the last ten years. Every day in California, four new families
are sitting around the kitchen table in a state of shock having just
gotten the diagnosis.
This is how a mother I know put it -- sometime
before her son's second birthday, someone crept into her house and took
her precious baby's mind and personality
and left his bewildered
body behind. If one in five hundred kids were actually being abducted in
the United States, it would be a national emergency and so should this be.
And that's why I'm here today.
In the 1950's when scientists first started describing
autism, it was the heyday of psychoanalysis. Scientists blamed autism on
bad parenting, trauma, refrigerator mothers. Because of this tragic
mistake parents were stigmatized. Parents never organized, serious
scientists did no research, and a generation of children was lost to
medical progress. Gradually people realized that autism was a medical
problem, but they thought that it was simply incurable. So the scientific
knowledge grew and matured all around the subject. Genetics imaging,
immunology, are light years ahead of where they were, but they were never
directed towards autism.
Five years ago my friends Jon and Portia watched in
horror as their son seemed to vanish in front of their eyes. They turned
to the medical establishment. The doctors said, "Oh don't worry about it,
he's a boy, they talk later, Oh he'll grow out of it."
and five different specialists later someone finally said he probably has
autism. They asked, what should we do? And the doctor said, "There's
nothing to do." They were told, "Hold on to each other and cry and
then move on with your lives."
That was it. No hope, no advice, just ignorance. They
didn't accept that answer. They explored every therapy, every theory,
every miracle cure, everything you would do for your child. When those
weren't working, they said well there must be something new, some cutting
edge research. But it simply didn't exist. Of 20,000 abstracts that year
at a Society for Neuroscience meeting, five were on autism. There were
maybe a dozen people in the whole country doing research on autism and of
those, only half had talent and financial support.
Jon and Portia went to the NIH, and the NIH said they
were working hard on autism. So they asked, how much are you spending on
it? No one would tell them. Jon would get up every morning at 6:00AM and
start calling the individual institutes until he could get an answer,
working his way down to the sub-sub-accountants who would go through the
files and help him piece together a picture. The answer at the time was
less than five million dollars a year. I know it's not the only way to
measure things, but that's less than 12 dollars a year per person, even
though autism costs the nation at least 13 billion a year.
Don't ever get between a lioness and her cubs and this
mother was not going to let the status quo hurt her child. Thus, Jon &
Portia started CAN, the Cure Autism Now Foundation. Jon and Portia took
the small amount of information there was about autism and started
presenting to the top neuroscientists. They all said the same thing. There
is unbelievable potential for progress. With the best minds and the latest
technology, early detection, prevention, better treatment and even a cure
They went back to the NIH, this time with an organization
of thousands of families and this is what they found: Incessant turf
battles between the various funding institutes. No coordination. Meetings
scheduled competitively. They had to go to congress to force the four
agencies to form a committee to cooperate. They had to go again to get the
NIH to pressure the researchers they funded to cooperate with each other.
They were resisted at every turn by officials who said don't tell us how
to do science. When they couldn't get the scientists to share biological
materials they went out into the community and started their own brain
banks and gene banks so more people could get into the field.
We are not asking you to tell the NIH how to do the
science, what to fund and what not. We're asking you to create a policy
that says do some science for God's sake. Take advantage of what is known
and use it. That is why we are asking for centers.
autistic children don't know where to get services, they often don't get
even a proper diagnosis. Researchers can't get access to families and that
slows down progress. This bill creates sites where families can come for
diagnosis and clinical care and where the very best scientists can get
access to those families. It creates a structure that encourages, no
actually mandates, scientists to work collaboratively, sharing information
and treatment protocols.
This is basically the same model that worked in
childhood leukemia. As new treatments were discovered they were tested and
validated and refined across collaborative sites. The result, the survival
rate for pediatric leukemia has gone from 20 percent to 80 percent. This
same center based approach has helped scientists make major discoveries in
Alzheimer's and new treatments are clearly on the horizon.
only the centers, but it is the money, and let me explain why this may be
a special case. In other diseases, breast cancer, prostate cancer,
Parkinson's, eventually, sooner rather than later, you die. If you have
any money, you leave some to fund research.
But autism affects
children. They don't lobby, they have no voice, they don't raise any
money. And their parents are too busy taking care of a very ill child to
do much of anything else. When the parents die, if there is any money in
the family, it goes towards taking care of the adult children so they
don't become wards of the state. The pot never gets any bigger. Recently,
as the numbers have increased, as famous people like Dan Marino and Doug
Flutie and Senator Slade Gorton have come forward to talk about their kids
and their grandkids, the autism community has mobilized.
They have aggressively recruited scientists, raised money,
started resources and fellowships. They feel that the potential to make a
breakthrough is here. Despite financial strain and limited time and
endless heartbreak, they have done more than their part. Now they are
asking you to do yours. I know that every parent's pain is deep and that
suffering is not a competitive sport to be ranked and rated, but in autism
the neglect has been so severe and the potential for progress is so great,
that to do nothing would be tragic.
I know one little boy with autism pretty well. He
likes to jump on the trampoline, and play in the sand and sometimes he
runs up to you and gives you a hug. But other times, when he is crying
late at night, he can't tell his parents if he had a bad dream, a tummy
ache or if he's sad because his little two year old brother can talk and
he can't -- even though he's seven. But when I look into his sparkly brown
eyes, I know that they are in there, and that he is in there, and that
he's counting on us to help him get out.
Please pass Senator Gorton's bill, the Advancement in
Pediatric Autism Research Act, out of this committee and send it on to the
Senate floor this year. It will make a real difference in the lives of
countless American children and their families forevermore.
Last week's PEOPLE magazine (Katie Couric on the cover) has an
article in the Scoop section on Anthony Edwards and his political action
work for the advancement in Pediatric Autism Research Act. He is a
tireless worker on behalf of all our children, and his dedication really
comes through in the article. You can write him in care of P.O. Box 2064
Danville, CA 94526.