FEAT DAILY NEWSLETTER
Sacramento, California http://www.feat.org
February 7, 2002
News Morgue Search www.feat.org/search/news.asp
·
Rene Russo Takes Action Against Autism
·
The Special Ed Conundrum: LA Times Editorial
·
Our Son Had MMR Shot ... Then the Lights Went Out
·
Hope Lives On In Autistic Treatment Plan
·
New Autism Emergency Notification System
*Reader’s Posts
[By Mike Falcon, Spotlight Health, USA Today. With
medical adviser
Stephen A. Shoop, M.D.]
http://www.usatoday.com/news/healthscience/hsphoto.htms
Rene Russo is best known for her action roles in Lethal
Weapon 3 and The Thomas Crown Affair. But some of Russo’s real-life action
comes in autism research, where her voice works for those who are afflicted by
a confusing and often misunderstood condition.
“One of the first things that amazed me about autism was
how little I knew about it,” Russo says. “And as I began to learn more I
realized I wasn’t alone — research was underfunded, and autism was little
understood and misunderstood at the same time.”
For most people who do not know someone with autism,
Dustin Hoffman’s character in the movie Rain Man is the disorder personified —
often difficult to deal with, quirky, self-isolating and unable to function in
the “real” world.
But the condition can’t so succinctly be described,
something Russo has learned.
Russo’s introduction to the world of autism began four
years ago when she met Dov Shestack, the young autistic son of Jon Shestack and
Portia Iversen, the founders of Cure Autism Now (CAN).
“One thing that immediately stands out to anyone who
knows people who
have autism is its range,” Russo says
Russo says autism is a spectrum disorder that can
encompass symptoms
from mild to severe
“Autism is strange in the sense that the most visible and
profoundly affected have been established as popular culture examples of what
autism is,” says autism researcher Matthew Belmonte. “But the true picture of autism
is far broader and more complex.”
People with autism may have heightened or decreased
sensitivities to sight, sound, touch, taste and smell. They may be able to
filter out extraneous information in one of these channels, but have an
extremely difficult time focusing in others. This includes noticeable auditory processing
delays, leading those unfamiliar with the condition to assume someone with
autism is ignoring them. “They’re not really,” Russo says. “They are just occupied elsewhere.”
Autism likely encompasses 400,000 to 500,000 people in the
USA. Estimates of American children who
will be diagnosed with autism generally range from one in 300 to one in 500.
But the disorder is increasing.
Our understanding of autism is apparently getting clearer.
At recent CAN presentations, leading researchers mingled with people with
autism, as well as their supporters and parents. What they saw surprised many.
A year ago, Dov Shestack was largely incommunicado,
underscoring one major hurdle in accurately assessing intelligence — those with
autism don’t want to answer many questions. With the aid of newly developed
teaching techniques and electronics, Dov stunned the crowd this year by
answering complex questions in geology and mathematics.
Rajarshi “Tito” Mukhopadhyay is severely affected by
autism and nearly non-verbal. Now the 13-year-old from India spells out words on
an electronic clipboard, writes eloquently and has gained recognition for his
poetry. When carefully and slowly asked by an audience member what he might
want, he quickly replied: “Get me a publisher.”
Among new findings detailed at CAN research presentations
late last month:
·
Autistic mice. Autism research suffered from lack of
appropriate animal models until Loren Martin of the University of Tennessee at
Memphis recently created a mouse that models specific brain dysfunctions found
in humans
Further research with these mice should open up new worlds
of understanding.
·
Physiology of attention. Belmote, the autism researcher
whose brother and niece are autistic, used quantitative electroencephalography
—measurement and mapping of the brain’s electrical activity — and functional magnetic
resonance imagining (fMRI) in his research. He found that people with autism
have undifferentiated activity spread across both brain hemispheres in certain
situations where normal brains shift from one side to the other. This suggests
that autistic brains cannot filter incoming stimuli at early stages of
perceptual processing and have to rely on later, less efficient means.
·
Genetics. Everything from environmental toxins to
vaccine reactions have been proposed as the underlying mechanism behind autism.
New research suggests that genetics definitely play a role in susceptibility.
But these and numerous other promising avenues still need
to be explored.
CAN and its groundbreaking researchers have gone
everywhere for additional financial help. Russo lobbied members of Congress for
increased autism funding. And a pioneer program running from Feb. 4 to April 4
shows that innovative corporate partners can make a big difference.
Chicago’s Maple Leaf Bakery has earmarked proceeds from
the sale of its popular California Goldminer Sourdough Bread, which is sold in
over 6,000 stores nationwide, to fund a CAN-sponsored scientist for a year.
But given CAN’s recent successes and more programs like
Maple Leaf Bakery’s, the main things holding back progress in autism could be
erased.
“We have a long way to go in learning about the disease
and what contributes to it,” says Russo, who will appear in the upcoming movie
Big Trouble with Tim Allen, which will be released in April. “Fighting autism takes
awareness and money, and we simply need more of both.”
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* * *
The Special Ed Conundrum: LA Times Editorial
[The stage is being set for Special Ed students to be
blamed for poor
student performance.
As if being disabled wasn’t bad enough, soon these
kids will also carry the burden of scapegoats for a politicized
and
incompetent education system. And what’s with the dubious
quotation marks
around the words “disabled”, “behavioral disorder” and “mainstream”? If
they think the labels are suspect, they should just say so
and why. –LS]
http://www.latimes.com/news/opinion/editorials/la-000008756feb04.story?coll=
la%2Dnews%2Dcomment%2Deditorials
Someday soon, on one of the Los Angeles Unified School
District’s overcrowded, dilapidated campuses, a little girl in a portable
classroom will raise her hand for help with a math question but the teacher
will be busy attending to the special needs of a new classmate. The new student
may be blind or deaf or autistic. More likely he will suffer from what is known
as a “behavioral disorder.”
What’s certain is that he, like the other 35,000 “disabled”
children that a federal order will “mainstream” from special-needs schools into
regular classes, will require more attention and additional teaching skills. Also certain is that the district, already
strapped for cash and administrative competence, cannot add this responsibility
without subtracting from the education of the 19 or 29 other students in the
class.
This is the sad legacy of a district that did the wrong
thing (by failing for years to provide equal educational opportunities to
disabled students, who have as much right to reach their full potential as any
other student) and then (when challenged by angry parents in a 1993 lawsuit
filed by the American Civil Liberties Union) took the expedient way out and adopted
a federal consent decree that was guaranteed to make matters worse. Make no mistake, studies show that most
physically and psychologically disabled students progress faster when they are
placed in at least some classes with nondisabled peers. But what about the
other students and the mainstream teachers? School districts such as New York
and San Francisco that are well ahead of the LAUSD on mainstreaming have
documented some unintended consequences. Already overworked teachers bailing
out of their careers is one. Cost is another.
The L.A. district currently spends more than $1 billion on
its 86,000 special ed students, more than half of whom already attend regular
classes at least part of the time. That cost is about to get much higher.
Thousands of teachers will need training, and some who don’t want this
particular challenge will quit. Principals, who have too much on their plates
already, will get another priority. Hundreds of schools will require renovations.
No one at district headquarters knows how much all this will cost. What Supt. Roy Romer does know is that the district
doesn’t have the money.
Even before the state’s current economic crisis, making
the required accommodations would have required the district to make deep,
painful cuts elsewhere. And, lest anyone need reminding, this is a district
that is already struggling to raise test scores while cutting 17 school days
from many students’ academic calendars and while following a year-round schedule
in order to accommodate a vastly swollen student population.
The fact is, the district has no choice but to ease these
disabled students into the mainstream by the agreed-on deadline of 2006.
As a stopgap reaction to this untenable situation, Romer
needs to lobby Washington harder. In 1975, when Congress passed the law that
now governs special education, it promised to provide 40% of the additional expense.
It now pays only about 12%. President Bush plans to include an additional $1
billion for special education in his proposed budget. The LAUSD alone could
absorb that amount.
Long-term, the district’s only hope is to introduce the
sorts of sweeping reforms that will make the schools work for every student—disabled
or not. A well-conceived plan that considers the needs of individual students
in the context of the entire student population could bolster disabled students’
learning and enrich the experience of those students whose only challenge is
overcoming the complexities of reading, writing and algebra.
* * *
[By Jim Morahan in The Irish Examiner.]
http://www.online.ie/news/irish_examiner/viewer.adp?article=1654387
UP to 80% autistic children make extraordinary progress
under new treatment, it was claimed yesterday.
Many have rejoined mainstream education since special
medical care, according to Florida-based Dr Jeff Bradstreet, who was in Dublin
yesterday.
Dr Bradstreet and his team devised the programme for over
1,800 children in countries around the world with autism spectrum disorders (ASDs).
Every aspect of care is addressed at the International Child Development
Resource Centre (ICDRC) in Florida.
The US expertise is being brought to Ireland by the
Cork-based Hope Project and Kathy Sinnott. Dr Bradstreet and experts will
explain ICDRC treatment procedures during a two-day training conference for
parents and professionals dealing with autistic children. The Open Windows
conference will be held on March 23 and 24 at O’Reilly Hall, University
College, Dublin.
Ms Sinnott, who took the State to court in order to give
her autistic son Jamie an education, said there was a drastic increase in
autistic spectrum disorders. “We in the Hope Project estimate that autism is presently
claiming more than one in 100 young Irish children,” she said.
ASD disorders affect virtually every system in the body,
especially the immune and digestive systems. Medical studies suggest behaviour,
communication and learning difficulties associated with ASD are the direct result
of the disorder. Previously medical opinion categorised autism as a psychological
disorder.
“If autistic children and those suffering from other ASDs
are to be helped, they must get an integrated and appropriate programme of
teaching, therapy and medical treatment that includes diet,” Ms Sinnott said.
“If an appropriate programme is delivered early enough and
intensively enough, many young autistic children can be recovered,” she added. “With
my son Jamie’s astonishing progress since his education began last year, we see
that an integrated, appropriate programme can even improve the quality of life
for a profoundly autistic adult.”
Despite the numbers of children and adults in need of
expert medical help, there was no clinic or medical professional in this
country assigned to or specialising in the medical treatment of ASDs.
* * *
[Richard Miles is one of the faithful news hunters and
gatherers for
this newsletter.
Unfortunately, he didn’t have to go very far to find this
one.]
http://www.thesun.co.uk/article/0,,2002060577,00.html#
Doting dad Richard Miles told last night how his son
became a “different child” after having the MMR inoculation.
He said: “On December 5 1989 Robert had the jab. After
that, it seemed the lights just went out. He was in a world of his own.”
Robert, then 14-months-old, had just started to speak. He
stopped talking and began bumping into things. He became so unhappy he would repeatedly
bang his head.
When he was four he was diagnosed with autism and a type
of bowel disease. Dad-of-three Richard, 46, from Hammersmith, West London,
said:
“Before his vaccine, Robert was perfectly healthy and very
alert.”
But the antiques dealer recalled: “We noticed a big change
in him when we went to stay with my parents-in-law in Jersey that Christmas.
“His walking became really unsteady and he kept bumping
into furniture.
“He was also very drowsy and would nod off at a
moment’s notice.
“By the time we came back to London he had stopped
talking. We took
him to our GP, but like thousands of others our doctor had
not yet come across this form of autism, so he couldn’t detect what was wrong.
“It was a difficult time — Robert became very difficult to
manage. He seemed very unhappy with the world.
“Family and friends thought he was a naughty child and
that we were responsible as his parents.”
Robert’s story will be familiar to the hundreds of other
parents who claim their children also developed autism after immunisation.
The main symptoms of the life-long disorder are difficulty
in communicating or interacting socially, speech problems, an inability to look
people in the eye, being withdrawn and self-absorbed.
Often sufferers do not understand facial expressions or
gestures and have a limited imagination. There are 518,000 sufferers in the UK.
Richard said Robert’s condition was known as secondary
autism. He added: “The paediatrician had never come across it before, but then
had eight cases at the same time.”
Now 13, Robert is much improved — thanks to a specialist
school, a controlled diet and drug treatment at the Royal Free hospital, North
West London.
Richard and wife Sarah, 45, are among 1,600 families suing
vaccine manufacturers for compensation. The companies deny any link.
* * *
[From a company announcement.]
Emergency Notification Systems has worked together with
specialists in the disability area, doctors, parents, and other professionals
to develop a system that provides critical protection to your members with
Autism. The ENS service protects anyone
who may run away or get lost, be mistaken by police as suspicious or on drugs,
or simply taking medications that emergenc y personnel should know about during
an emergency.
Emergency Notification Systems is a national company
servicing the entire country.
Emergency Notification Systems offers identification
products and a 24-hour support line that protects people in emergencies. All identification products feature the
toll-free number for the ENS 24-hour support line that immediately:
Provides detailed information about medical
conditions, prescriptions,
health insurance, and other supplemental information
Notifies emergency contacts, including parents,
relatives, and a
physician or psychologist that an emergency has occurred,
where it occurred,
and where the person is being taken
Faxes the information to a hospital or other location
as requested
Handles Power of Attorney and other legal situations
in an emergency
Several types of identification products provide
multiple layers of
protection:
Five different types of customized identification
jewelry: a keychain,
kid’s clip, bracelet, necklace, or the new shoe tag for
those sensitive to
jewelry
An identification card that provides more detail about
medical
conditions, prescriptions, insurance information, and other
supplemental
information
Caregiver cards for those providing care to the
consumer to identify
that they are the authorized staff/caregiver for that person
www.emergencynotificationsystems.com/autism
Or call 1-800-303-5515
* * *
Would like to connect with other
parents of young, autistic children who show an interest/uncanny ability in
music, esp. piano. Have a 4 y.o., HFA, who
has perfect pitch and plays left hand parts of Chopin, Beethoven, etc...How do
I channel this? jharamia@planetkc.com.
I am the mother of an 8 ˝ year
old daughter with language and reading comprehension issues. She is not ASD but had serious multiple
delays when she was younger. We are
considering Interactive Metronome. If
anyone has firsthand experience they are willing to share, please email me at awremail@yahoo.com.
I need a source of sweat pants
without elastic on the bottom leg hem for my 10 yr old AS son. The Gap used to
sell them, but have switched their styles.
Reply to cindymaak@aol.com.
Looking for a full time support
person for our 9 year old son with autism.
Position would be at the International School of Bern, Switzerland. English speaking school. If interested or know of any resources in
Switzerland please write Kimberly at jmklionheart@hotmail.com.
>>
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