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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Tuesday December 18, 2001
INDEX:
* "Congress Reaches
Compromise on Education Bill"New York Times Online
* The Board of Directors of the NIDS Research Institute and Parent
Coalition extends this invitiation to a General
Information Phone
Conference
* 'They have some fantastic things to tell us"
* Alive and well
* Think Different?
* Take The AQ Test
* The Geek Syndrome
******************************
"Congress Reaches Compromise on Education
Bill"New York Times Online
December 12, 2001by ADAM CLYMER with LIZETTE ALVAREZ WASHINGTON, Dec. 11 — House and Senate conferees agreed today on
final details of President Bush's education bill, giving Mr. Bush his first
domestic legislative victory since Democrats took over the Senate and giving
poor children, especially in big cities, a major increase in federal
aid.Today's action represents a significant new direction in federal education
policy; it will result in the first major change in the Elementary and
Secondary Education Act since it was rammed through Congress by President
Lyndon B. Johnson in 1965.The measure, expected to be passed by the House and
Senate this week, seeks to redirect the focus of federal education aid to
public schools with large numbers of poor children.Over the years since 1965,
the money has been spread around, often to wealthy school districts with a few
poor children, as each member of Congress wanted to make sure his district
received its share.The bill also mandates annual testing for measuring student
performance and holds failing schools accountable.Mr. Bush, who made the
legislation a top priority, praised the agreement's "profound
reforms." He said in a statement, "The conference agreement will ensure
that no child in America is left behind through historic education reforms
based on real accountability, unprecedented flexibility for states and school
districts, greater local control, more options for parents and more funding for
what works."Appropriations conferees, who had been working closely with
the committees in charge of education, agreed today on a 20 percent spending
increase for Title I of the Education Act. That means $22.6 billion, up from
$18.8 billion, for the part of the program that directs money to schools based
on poverty rates. Mr. Bush had sought an increase of only $685 million.But the
changes in formulas for allotting the money were the responsibility of the
House and Senate committees that deal with education, and their vote today
ensured that big cities got the bulk of the increases.New York City will get a
29 percent increase, to $636 million from $492 million; Chicago's allotment
will go up 29 percent, to $220 million from $170 million; and Los Angeles will
get 38 percent more, going to $308 million from $222 million.Other major
provisions of the bill require annual testing of all children in grades three
through eight in reading and math, as well as granting parents the right to
transfer their children out of failing schools to other public schools or get
federal aid for private tutoring. In addition, the bill gives states greater
flexibility to move money among different federal programs and provides more
money for teacher training, bilingual education, after-school programs and
technology.In addition to the increased spending, Mr. Bush had to give up some
important proposals to get the measure passed. For example, he had called for
money to be taken away from failing schools and given to students to use as
vouchers in other schools, including private schools. All that remains of that
is the opportunity to transfer to another public school and the money for
tutoring.He handled the progress of the bill with detachment, not getting
involved in details. But he made it absolutely clear to conservative
Republicans like Representative Tom Delay of Texas, the House majority whip,
that he insisted on getting a bill, even if they did not like the increased
federal role in education.The day-to-day management of those concerns in the
House, which Republicans still control, was the task of Representative John A.
Boehner of Ohio, chairman of the House Committee on Education and the Work
Force. He said the annual testing required in the bill would "empower
parents, voters and taxpayers in each state with the data generated by those
tests; failure would no longer be hidden from parents' view, and poor results
would no longer be subsidized by taxpayer funds."Representative George
Miller of California, the committee's senior Democrat, praised Mr. Boehner for working
in a bipartisan spirit. He said that was notable because "Mr. Boehner and
I spent most of our careers throwing rocks at one another."Mr. Miller also
called this year's bill a return to the principle invoked in 1965 "that
the federal role in education was to make up for inequities in school
funding." Congress passed that law, "but they never went back to make
sure that was happening," Mr. Miller said. "Now, 35 years later the
gap between majority and minority children in this country hasn't been closed
in any significant way."The conference lasted five months and moved by
fits and starts, as Senator Edward M. Kennedy of Massachusetts, the chairman of
the Senate committee that deals with education, stalled action until the
additional spending he regarded as a minimum had been assured. Today he said
still more money would be needed."With these reforms, now we can take what
is a national priority and elevate this further in the national dialogue and
gain the kind of funding this requires," Mr. Kennedy said.Senator
Christopher J. Dodd, Democrat of Connecticut, was blunter."If this was the
Defense Department budget," Mr. Dodd said, "we wouldn't be talking
about doing everything we could, but didn't get everything we
need."Figures were available only for a few other cities' Title I
increases. Detroit would go up 27 percent, to $125.7 million from $99 million.
Philadelphia would increase 27 percent, to $115.2 million from $90.1 million,
and Boston would go to $14.9 million from $11 million, up 35 percent.The only
issue left today was an effort by Senator Tom Harkin, Democrat of Iowa, to
guarantee to the states the 40 percent of their special education costs
Congress promised many years ago but never delivered.His proposal would have
increased federal spending from $6.3 billion to $21 billion after six years.
House Republicans rejected the proposal today and it died, but the
appropriators agreed to increase spending substantially this year, though
precise numbers were not available.Interest groups offered conflicted reactions.Bob
Chase, president of the National Education Association, complained of the
decision on special education financing, which he said would have been a great
help when states were cutting their school budgets. But he praised the policy
elements of the bill, which "will move education forward."Krista
Kafer, senior policy analyst at the Heritage Foundation, called the measure a
"mixed bag." She said there were "small steps to reform,"
especially provisions that make schools with low test scores accountable to the
public. But she said the provisions for transferring from a failing school were
inadequate because they did not include private schools.
******************************
The Board of Directors of the NIDS Research
Institute and Parent Coalition
extends this invitiation to a General Information Phone Conference
this
Thursday, December 20 at 6:30 PM PST/9:30 PM EST.
This call will review the following information:
a.. Introduction of the New Board and review of the current operations
structure.
b.. Overview of Committees
c.. The release of both business plans:
Non-Profit
NIDS Plan
Neuro
Immune Technologies Business Plan
d.. Plans for upcoming physician training symposiums
e.. Discussion of Chart Review/Publication Plan
f.. Upcoming speaking engagements by members of the Scientific and
Medical
Advisory Board
g.. Fund Raising Plans
h.. Chapter Developement
i.. National Conference
j.. Discussion of open positions on current committees.
While one goal of this call is to provide updated information to all who
attend, I must stress that another goal is to reach out to as many
individuals and families who would like to help move the Coalition forward.
While fundraising is a critial element another critical issue is individuals
who will give some time and energy. The Board has many great ideas and needs
your help bringing them to fruition.
As can be seen from the topics of discussion, there are things in process no
that will help jump things forward quickly once implemented. Many
children
and parents are counting on those of us who can afford the time, to make
this happen. I urge all of you to join this call and consider what time you
can offer
The information for the call is as follows:
Phone Number- 1-877-847-9224 ( International is 1-630-424-7785)
Enter the
Passcode 6659190#
The Name of the call is NIDS General Meeting. Host is Marc Share
The board looks forward to chatting with you on Thursday. If possible,
please confirm your participation with an e-mail to info@healnids.org
a.. Marc Share
President & Executive Director
NIDS Research Institute and Parents Coalition
'Working To Give Our Children A Future'
b.. Please feel free to e-mail me directly marc@healnids.org of
call at
818-951-8579
******************************
'They have some fantastic things to tell us"
For most
teachers, patience is a virtue. For Eric Witt, first-year special education
teacher at Elliott School, it is a mandate. Every day is a new challenge in his
resource room for grades 3-5. Students filter in from their homerooms for extra
help in reading and math. Sometimes, he assists them in their regular
classrooms. His kids have nearly every special ed label: autism, learning
disabled, behavior disorder, mild mental handicap, speech impairment, hearing
impairment, English Language Learner. His approach is unruffled, soothing. On
one day he sits next to a student with autism to help get her started on her
math worksheet. "Look at your paper, don't be shy," he says quietly.
"Can you do this? Do you need to take a little time?" "Take your
pencil or we'll need to find another seat for you." "Are you
ready?" He pats her gently on the back. "Sit up. You don't have to
hide your work." The paraeducator in Witt's room, Karen Beacon, says they
are finding their way with this student, having real success. "Resource
kids bring us back to square one and make us rethink everything," she
said. "If we listen, and take our cues from them, they have some fantastic
things to tell us." For Witt, Elliott was a natural choice for his first
teaching assignment. He had spent time at the school during college and was a
student teacher there last year. "I felt really comfortable. There's a lot
of children here with a lot of needs, not just academic but personal," he
said. "There's a lot of diversity . . . a whole school, whole team
environment. I kind of knew the only school I wanted to be at was
Elliott."
Lincoln Journal Star
http://www.journalstar.com/local?story_id=5420&past=
******************************
Alive and well
Money insulates celebs from disability experience
Some
years ago, when the late-night chat of a group of disability rights advocates
turned frivolous after too much intensity and probably too many beverages, we
started playing with words for potential slogans. Wheelchairs are wonderful?
Blind is beautiful? Deaf is dynamic? Autism is awesome?
Well, you get the idea.
Fortunately, this was all in jest. Still, while such irreverent slogans are
definitely not fit for tserious ideas, the exercise represents the reality that
among people with disabilities, there is a real sense of community that is
culturally similar to that of common ancestry.
Among disability groups,
solidarity is particularly apparent among the deaf.
When my Nov. 4 column regarding
Rush Limbaugh's deafness made the rounds on an Internet discussion group on
deafness, the comments were significantly different from those made by any
other readers. They are enlightening, not so much with regard to Mr. Limbaugh's
situation, but as to the attitude toward deafness held by those who experience
it. Of particular interest are
the comments distinguishing between cultural deafness and physical or
pathological deafness. Doug Dunn of San Diego, writes: “He [Mr. Limbaugh] is
deaf in the sense of a physical pathology of hearing loss, lower-case d. He is not
culturally deaf and knows nothing of the experiences and perspectives of deaf
culture, language, history and community. He's not deaf with upper-case
D.” In other words, he likely
will never learn American Sign Language, use ASL interpreters, or know the
familial spirit of sharing highly visual communication with others who are deaf.
Far from seeing Mr. Limbaugh as
a potential role model, deaf people expressed fear of the danger posed to the
deaf community by someone so celebrated losing his hearing and remaining
outside the realm of deaf culture. Robert
Simpson, a student of rehabilitation counseling, wrote that an adult losing
hearing needs to go through the stages of grief — denial, anger bargaining —
before learning to cope. Others held the opinion that wealth and prestige will
sufficiently insulate Mr. Limbaugh from acquiring the usual coping skills and
will, consequently, never understand deafness beyond its medical implications.
Because he will be able to
afford any accommodations (never knowing, for example, what it is to need an ASL
interpreter in a medical emergency), those immersed in deaf culture fear that
his status will do more harm than good.
As Mr. Dunn puts it, “He does
not support the political interests of disabled persons and does not support
the Americans with Disabilities Act. Rush Limbaugh has become even more
dangerous to the deaf community than he was before, because now some misguided
people are holding him up as an example. People will say "Rush said . . .
and he is deaf. . . .' And they will think he is speaking for the deaf
community (of which he is not a part and of which he understands nothing.”
Similar to Reeve Similar
concerns have been voiced by people with physical disabilities regarding actor
Christopher Reeve. Being quadriplegic for him, they argue, is not the same as for
individuals who can not pay for treatment and personal care.
Scrape off the bitterness and
what lies beneath these attitudes is both pride and fear. Those who have had
time and experience working around a disability often learn that it presents
more of a cultural distinction than a medical one. There is pride in that
accomplishment and in the shared understanding among those who have traveled
the same roads. When a celebrity joins the ranks and sings a different tune, it
is not surprising that some will fear losing hard-won ground.
Maybe someday we'll all embrace
deaf culture — disability culture — in the same way we now scramble to eat,
drink and wear the trapping of ethnic cultures beyond our own. While those
without disabilities are catching up, it would also be good if newly disabled
celebs spent a little time learning from those who have “been there,” and if
those who have “been there” cut the newbies a little slack.
Contact
Deborah Kendrick by phone: 673-4474; fax: 321-6430; e-mail:
dkkendrick@earthlink.net.
http://enquirer.com/editions/2001/12/16/tem_kendrick_alive_and.html
******************************
Think Different?
Autism researcher Simon Baron-Cohen on "mindblind"
engineers, hidden pictures, and a future designed for people with Asperger's.
Interview by Oliver Morton
Sally has a marble. She puts her marble
into the box, and then she goes outside. Anne comes in, takes the marble out of
the box, and puts it in her basket. When Sally comes back, where will she look
for the marble? By the age of 4 or so, most children who watch this scenario
played out by puppets - including children with Down's syndrome and other
developmental problems - know the answer. But some do not. They do not
understand that what they know and what Sally knows are different, that Sally
has a mind of her own. The children who expect Sally to look in the basket,
because they know that's where the marble is and can't believe that she
doesn't, are the ones likely to be diagnosed with autism or its relative,
Asperger's syndrome. Simon Baron-Cohen, a tall, soft-spoken clinical
psychologist at the University of Cambridge, has spent two decades studying
autism - how to help the people disabled by it and what the syndrome tells us about
normal minds. Baron-Cohen is interested in the brain and in genes (his group at
Cambridge is collaborating with geneticists in new studies of Asperger's
syndrome), but his key interest is in minds: their workings, their
malfunctions, their origins, and their care. From the beginning, his work has
been centered around what's called a theory of mind - that is, an innate
ability to understand other people as having feelings, intentions, and pictures
of the world that are not the same as our own. A theory of mind is a basic
requirement for empathy or, for that matter, deceit. And according to an
approach to autism that has become increasingly influential in Britain over the
past decade or so, a theory of mind is what people disabled by autism and its
related conditions lack. They are, in Baron-Cohen's nicely coined word,
"mindblind." More recently, Baron-Cohen has looked at another aspect
of the autistic mind: a proclivity for systemizing - for understanding and
constructing rules-based systems to explain our experience. To understand the
social world, such rules are a poor replacement for a theory of mind; to
understand the natural world, they are very useful.
It is another focus of his research, though, that has made
Baron-Cohen an occasionally controversial figure. In 1997, he and his
colleagues looked for and found some evidence of a link between autism in
children and a propensity for engineering in their parents. Further work with
students at Cambridge has suggested that engineers, mathematicians, physicists,
and computer scientists have a way of thinking that is quantifiably "more
autistic" than that of their peers in the humanities, arts, and social
sciences. To some, this sounds like a medicalized stigmatization of nerdiness.
Others fear that linking children's disabilities to their parents' inclinations
is a new way of blaming the parent. Baron-Cohen rejects this. He argues that
linking the styles of thinking that society has come to value is helpful, not
harmful. Minds come in different shapes just as bodies do, and we must learn to
accept that. Indeed, we must learn to value it.
Wired: How common is autism? Baron-Cohen: Current studies
suggest that the incidence is about 1 in 200 children for all disorders in the
autism spectrum. That's much, much higher than the textbooks quote: Textbooks
say 4 in 10,000. Why the gap? It's probably due to growing public awareness. Also, we're now
looking for children at the higher end of functioning, children with autism who
have normal intelligence. In the past we tended to look in special schools or
in child psychiatric clinics for children with learning disabilities and a
range of other problems; nowadays we look in the community at large. Is there a danger that broadening the definition of autism might
trivialize the problems of those with profound disabilities, equating a severe
disorder that requires lifetime care with something much milder? A PhD student with Asperger syndrome might be just as disabled as
a person with learning disabilities and classic autism. Both may end up in need
of considerable support, though of different kinds. The people being diagnosed
at a rate of 4 in 10,000 needed more clinical support than the 1 in 200
diagnosed today. But I'd be hesitant to say that those cases were more severe.
Autism spectrum disorders are linked to other problems: Most of the people we
see in our Asperger clinic for adults also suffer from clinical levels of
depression. At any point on the spectrum, a diagnosis of Asperger is only given
if the symptoms are causing a significant impairment to how someone functions.
So "mild" cases, which don't really interfere, should not be
diagnosed at all. You argue that people with autism lack an
innate capacity to draw inferences about what others know or think or feel - a
"theory of mind." Is this ability separate from the ability to think
about the world in general? One of the papers I've
written with colleagues describes three individuals who have Asperger syndrome.
One won the Olympiad in physics and math right through his teens, and when
presented with a physics or math problem he could solve it very, very rapidly.
Yet he couldn't decode facial expressions of emotion in photographs. The second
was a professor of mathematics, the winner of the equivalent of the Nobel Prize
for math, the Fields Medal. No difficulties at all in abstract reasoning, but
given photographs of facial expressions that somebody without any mathematical
ability could read easily, he performed significantly below the average level.
The third example was a computer scientist who could write programs without any
effort at all, but again, just looking at a face, he couldn't tell what a
person was feeling. It can't be a general problem that's affecting the mind as
a whole. It must be a specific deficit.
http://www.wired.com/wired/archive/9.12/baron-cohen.html
******************************
Take The AQ Test
Psychologist Simon Baron-Cohen and his colleagues at
Cambridge's Autism Research Centre have created the Autism-Spectrum Quotient,
or AQ, as a measure of the extent of autistic traits in adults. In the first
major trial using the test, the average score in the control group was 16.4.
Eighty percent of those diagnosed with autism or a related disorder scored 32
or higher. The test is not a means for making a diagnosis, however, and many
who score above 32 and even meet the diagnostic criteria for mild autism or
Asperger's report no difficulty functioning in their everyday lives.
http://www.wired.com/wired/archive/9.12/aqtest.html
******************************
The Geek Syndrome
Autism - and
its milder cousin Asperger's syndrome - is surging among the children of
Silicon Valley. Are math-and-tech genes to blame?
By
Steve Silberman
PLUS
Take The AQ Test
For More on Autism
Nick is
building a universe on his computer. He's already mapped out his first planet:
an anvil-shaped world called Denthaim that is home to gnomes and gods, along
with a three-gendered race known as kiman. As he tells me about his
universe, Nick looks up at the ceiling, humming fragments of a melody over and
over. "I'm thinking of making magic a form of quantum physics, but I
haven't decided yet, actually," he explains. The music of his speech is
pitched high, alternately poetic and pedantic - as if the soul of an Oxford don
has been awkwardly reincarnated in the body of a chubby, rosy-cheeked boy from
Silicon Valley. Nick is 11 years old. Nick's father is a software engineer, and
his mother is a computer programmer. They've known that Nick was an unusual
child for a long time. He's infatuated with fantasy novels, but he has a hard
time reading people. Clearly bright and imaginative, he has no friends his own
age. His inability to pick up on hidden agendas makes him easy prey to certain
cruelties, as when some kids paid him a few dollars to wear a ridiculous outfit
to school. One therapist suggested that Nick was suffering from an anxiety
disorder. Another said he had a speech impediment. Then his mother read a book
called Asperger's Syndrome: A Guide for Parents and Professionals. In
it, psychologist Tony Attwood describes children who lack basic social and
motor skills, seem unable to decode body language and sense the feelings of
others, avoid eye contact, and frequently launch into monologues about narrowly
defined - and often highly technical - interests. Even when very young, these
children become obsessed with order, arranging their toys in a regimented
fashion on the floor and flying into tantrums when their routines are
disturbed. As teenagers, they're prone to getting into trouble with teachers
and other figures of authority, partly because the subtle cues that define
societal hierarchies are invisible to them. "I thought, 'That's
Nick,'" his mother recalls.
Asperger's syndrome is one of the disorders on the autistic
spectrum - a milder form of the condition that afflicted Raymond Babbitt, the
character played by Dustin Hoffman in Rain Man. In the taxonomy of
autism, those with Asperger's syndrome have average - or even very high - IQs,
while 70 percent of those with other autistic disorders suffer from mild to
severe mental retardation. One of the estimated 450,000 people in the US living
with autism, Nick is more fortunate than most. He can read, write, and speak.
He'll be able to live and work on his own. Once he gets out of junior high
hell, it's not hard to imagine Nick creating a niche for himself in all his
exuberant strangeness. At the less fortunate end of the spectrum are what
diagnosticians call "profoundly affected" children. If not forcibly
engaged, these children spend their waking hours in trancelike states, staring
at lights, rocking, making high-pitched squeaks, and flapping their hands,
repetitively stimulating ("stimming") their miswired nervous systems.
In one of the uncanny synchronicities of science, autism was first recognized
on two continents nearly simultaneously. In 1943, a child psychiatrist named
Leo Kanner published a monograph outlining a curious set of behaviors he
noticed in 11 children at the Johns Hopkins Hospital in Baltimore. A year
later, a pediatrician in Vienna named Hans Asperger, who had never seen
Kanner's work, published a paper describing four children who shared many of
the same traits. Both Kanner and Asperger gave the condition the same name:
autism - from the Greek word for self, auṭs - because the children in
their care seemed to withdraw into iron-walled universes of their own. Kanner
went on to launch the field of child psychiatry in the US, while Asperger's
clinic was destroyed by a shower of Allied bombs. Over the next 40 years, Kanner
became widely known as the author of the canonical textbook in his field, in
which he classified autism as a subset of childhood schizophrenia. Asperger was
virtually ignored outside of Europe and died in 1980. The term Asperger
syndrome wasn't coined until a year later, by UK psychologist Lorna Wing,
and Asperger's original paper wasn't even translated into English until 1991.
Wing built upon Asperger's intuition that even certain gifted children might
also be autistic. She described the disorder as a continuum that "ranges
from the most profoundly physically and mentally retarded person ... to the
most able, highly intelligent person with social impairment in its subtlest
form as his only disability. It overlaps with learning disabilities and shades
into eccentric normality." Asperger's notion of a continuum that embraces
both smart, geeky kids like Nick and those with so-called classic or profound
autism has been accepted by the medical establishment only in the last decade.
Like most distinctions in the world of childhood developmental disorders, the
line between classic autism and Asperger's syndrome is hazy, shifting with the
state of diagnostic opinion. Autism was added to the American Psychiatric
Association's Diagnostic and Statistical Manual of Mental Disorders in
1980, but Asperger's syndrome wasn't included as a separate disorder until the
fourth edition in 1994. The taxonomy is further complicated by the fact that
few if any people who have Asperger's syndrome will exhibit all of the
behaviors listed in the DSM-IV. (The syn in syndrome
derives from the same root as the syn in synchronicity - the word
means that certain symptoms tend to cluster together, but all need not be
present to make the diagnosis.) Though Asperger's syndrome is less disabling
than "low-functioning" forms of autism, kids who have it suffer
difficulties in the same areas as classically autistic children do: social
interactions, motor skills, sensory processing, and a tendency toward
repetitive behavior.
http://www.wired.com/wired/archive/9.12/aspergers.html
******************************
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