AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Friday, November 30, 2001
INDEX:
* Moved
by the plight of autism's lonely victims
* WATKINS
ENCOURAGES POLITICAL ACTION BY PARENTS AND OTHERS
IN HIS THIRD "LISTEN AND LEARN"
SESSION
* Congress
Mulls Over Special Education
* Why my
son, 15, hates Christmas
* Children
in a world they don't understand
* Another
world
******************************
The
Times Christmas Appeal
Moved by the plight of autism's lonely victims
VALERIE
GROVE MEETS JANE ASHER
WHEN celebrities agree to become figureheads of charities, there is often a
personal connection or a heart-wringing appeal in the cause itself. Neither
applies to Jane Asher’s presidency of the National Autistic Society. One day in
1985 she was invited to a tea party at the House of Commons where four
children’s charities had gathered after a fundraising campaign. Each charity
had brought along a group of children so the room was full of excited noise.
But at one table the children, who appeared to have no obvious disability, sat
in silence. There was no interaction, no chatter, no shrieks of laughter. “They
didn’t even look at one another. In fact they seemed completely unaware of the
others’ presence,” she recalls. Where were they from? She was told that they
were autistic children. “I had heard of autism, but knew almost nothing about
it. I thought vaguely it was something to do with an emotional shutting in. I
had no idea until I watched those children just how devastating the condition
is — how terrified and lonely they must be, looking out on a world where
everything is mysterious and incomprehensible.” The following month she was
asked to open a playgroup for autistic children. By 1987 she was fronting the
Autism Awareness Campaign of the National Autistic Society. I visited her at
home in Chelsea at that time, when she and her husband, the artist Gerald
Scarfe, had produced a new children’s book. Jane Asher was the original 1980s
domestic goddess, a highly organised mother of three whose name was firmly
linked with iced cakes. She seemed forever on stage, or writing a book, or on
camera in her sunny kitchen. She had headed many child-focused campaigns. Why
take on the problems of autistic children in an already crowded life? “Anyone
with any sense of humanity would do these things if asked,” she replies
crisply. “Autism is much more serious than I’d at first realised, a mystifying
disorder that is totally handicapping.” She could have chosen an easier cause.
It has been hard over the past 17 years, she confesses, to get support and
sympathy, even for autistic infants who are sweet and appealing. When the
children grow into awkward and uncooperative adults it is almost impossible. So
she speaks out, articulately and with passion, on the subject. She recently
gave a lecture on Asperger’s syndrome, a facet of autism, that enthralled and
enlightened her audience. She visits schools, and homes for autistic adults
whose behaviour is “severely challenging”. She has become familiar with those
who cannot communicate in a normal fashion: children who, if they can speak at
all, can do so only by parroting everything back (echolalia); a young man who
recites to her, on each visit, the type, colour and registration number of all
the minicabs she has ever arrived in (obsessive, reiterative displays of memory
are common in autism). The “triad of impairment” — social interaction,
communication and imagination — may not sound crucial to leading a normal life.
A mildly autistic person may merely seem gauche, unable to engage in natural
conversation. “If we say someone lacks imagination we mean they’re a bit
prosaic, not very creative perhaps,” Asher says. “The reality for an autistic
person is that with no imagination it is almost impossible to function in the
world. There’s no yesterday, no tomorrow. No idiom, no irony, no jokes. There
isn’t really anyone else outside yourself and not even any sense of self. The
whole world becomes impenetrable. “There can be no friendship, no give-and-take
conversation such as we’re having. “Facial expressions and gestures, smiles and
frowns, mean nothing to someone with autism. They may find sound or light or
certain colours unbearable . . . One of the earliest signs of autism is lack of
eye contact and, in a young baby, the failure to point at things. “Normal
babies start pointing at things very early, which leads to saying words. An
autistic child doesn’t.” Nor does the autistic child respond emotionally. Jane
Asher can only imagine how heartbreaking it must be not to have “the little
kisses and hugs, the spontaneous affectionate expressions that are part of
daily life, that we take for granted”. Autism, incurable and lifelong, is on
the increase. Diagnosis has improved and the spectrum is ever widening so that
more people are included but the numbers are growing anyway. “When I started we
talked about 80,000 affected. We now talk about half a million.” This is where
the work of the National Autistic Society comes in: the earlier the diagnosis
is made the more that can be achieved in education and help. Only with a high
level of support can an autistic child have a fulfilling adult life. Autistic
disorders are due to a physical dysfunction of the brain. It tends to appear in
families and occurs four or five times more often in boys than in girls. “One
day they will identify the gene,” Jane Asher says. “But it’s complicated
because you can have other conditions with autistic tendencies, or autism with
or without learning disabilities. And then there is Asperger’s.” She is
fascinated by Asperger’s, named after the paediatrician who described the
syndrome in 1945. People with Asperger’s can be bright, high-functioning but
socially impaired, their conversation repetitive and limited. They may be
intellectually brilliant at one thing — computers, architectural drawing, music
— but that is rare. “I suspect many of those labelled geeks, such as
traditional train-spotters, may be Asperger’s too. Repetitive activities
provide the security of being predictable. Through the National Autistic
Society’s scheme called Prospects, which finds employment for those with
Asperger’s, one boy found a job stacking supermarket shelves. But it distressed
him terribly to see customers taking the tins away.” As I listen to Asher’s
real enthusiasm for her subject I remember that she is a doctor’s daughter.
Richard Asher was a neurophysiologist who first described a mental disturbance
(unrelated to autism) now called Munchausen’s syndrome. Studying autism, she
says, makes her ponder on what we all consider normal civilised behaviour: why
do we insist on the pretence of greetings such as “good morning” or the custom
of men wearing ties? Being among those who are bewildered by such things makes
one question who is normal. “Autism strikes at the heart of what it is to be
human, to understand one’s own feelings and those of others.” Forty years since
its foundation, the NAS did a survey last year and found that while 65 per cent
of people knew about autism, only 4 per cent had heard of Asperger’s. It also
revealed that people can make remarks such as: “There should be euthanasia for
kids like yours.” There is still much to be done.
http://www.thetimes.co.uk/article/0,,2-2001552802,00.html
*****************************
WATKINS ENCOURAGES POLITICAL ACTIONBY PARENTS AND OTHERSIN
HIS THIRD “LISTEN AND LEARN” SESSIONParents, teachers, and
administrators came together on November 13th in Kent County to tell State
Superintendent Tom Watkins of their concerns, opinions, experiences with, and
hopes and dreams for, special education in Michigan in the third of six “Listen
and Learn” sessions. On this night the Superintendent spent nearly
four hours listening and responding, telling the crowd, “An ancient Chinese
proverb says that God gave me two ears and one mouth so that I could listen
twice as much as I talk.” He began the session by reiterating his
commitment to make decisions that come down on the side of children, teaching
and learning as opposed to decisions designed to foster adult power, control
and administration. “We are not talking about a statistic or a number,
but somebody’s child, someone’s student. The final recommendations I make
will be measured against that yardstick.” He also vowed to keep Michigan
a national model stating, “Michigan has been and will remain a
leader in the provision of special education services.”As in previous sessions,
the Superintendent heard the belief repeatedly expressed that the proposed
changes were motivated by monetary concerns and not by a desire to improve special
education. “I don’t think that the rules are the problem,” said one
parent. “The people are not the problem. Money is the
problem. Administrators won’t come out and say it, but we all know that
money is the problem. We know what the symptoms are: understaffed
programs, too large classrooms, untrained aides. Rather than trying to
attack the symptoms, why don’t we go after the problem? What are you
doing,” he asked Watkins, “to increase the funding available to special ed and
education in general and is there anything that States can do in general?”“I
was in Washington last week and met with our Congressional delegation,” Watkins
responded, “and I talked about this. I have to tell you, before 9-11 I
believed that we were going to get closer to full funding of special education
– the 40% originally promised by the federal government to the states.
But now, I think that the reality has changed.”“You need to understand that
politics equals human services and human services equals politics,” he told the
crowd. “ It comes down to who is advocating and how well they are
advocating. It is amazing to me when I think of the power of parents, to
think of what could happen if the people in this room decided to work
together. Get politically active,” he encouraged. “Did you know
that if a Senator gets ten letters on a topic it is a crisis? Write those
letters! And how many of you have considered running for State Rep?” he
asked. “You should. Every other interest group is considering it.
The Superintendent also once again called upon parents and educators to support
postponing the upcoming 0.1% income tax reduction. “Did you know we are
getting ready to give you $55 in tax relief for a family of four making $40,000
a year?” he asked the crowd. “That’s not $55 a week or $55 a month, but
$55 a year. It was LBJ who said that you can’t put the toothpaste back in
the tube. Once we give back that money, it’s gone. But if we keep
it at the state level, it adds up to $135-170 million depending on which budget
figures you accept. Between that and the single business tax cut we are
also getting ready to give, it comes to ¾ of a million dollars. In
difficult economic times, when we are cutting basic services such as reading
programs, it doesn’t make sense to further reduce our resources. We just
cut half a million dollars last week and it’s not over.”“Education is full of
acronyms so I made up my own,” he went on. “Mine is ‘PAUSE’ – ‘Push
Academics Until Schooling Ends.’ That’s the PAUSE button. We need
to hit the PAUSE button on this tax reduction so that in these difficult
economic times we can protect resources in education and human services.
If you believe as I do, ask the Governor and legislators to hit the PAUSE
button. Let’s conserve our resources until we can afford it. My
concern is that if we don’t, whoever is elected governor next year will open
the budget cupboard and find it bare. Then they will be forced to either
raise revenue or slash and burn.”But he also reminded the crowd that scarce resources
are a current reality. “We have created an expectation of unlimited
services in a system of limited resources. It is not like the
superintendents and the ISDs are sitting back and asking, how can we
shortchange children? There are a lot of good people out there, but they
are faced with very difficult decisions. Do they hire an aide or get new
uniforms for the band? It is hard when decisions are perceived that way,
or actually are that way when we are dealing with limited resources.”A special
ed administrator agreed. “I’ve been a special education administrator for
24 years,” she said. “I just had a meeting with my superintendent. We are
faced with a zero increase budget and we have a bigger picture to look at
beyond special ed. We have to think about kids who aren’t in special ed
and don’t get breakfast and who don’t have clean clothes. On top of that,
we are faced with teacher contracts that already have built in step
increases.”Watkins responded, “We can either increase revenue or decrease
costs. We are going to have to become more efficient and effective in the
way we deliver services. We have to ask the question, can smaller
districts share services and achieve economies of scale? Do we need
superintendents for 500 school districts? How many kids should a special
ed director oversee? 200? 300? 500? We may have one
superintendent overseeing 300 students and another next door overseeing
1200. Maybe we need to consolidate some of that oversight. But keep
this in mind...we want our superintendents to make difficult decisions, but do
you know what they call a local superintendent who closes a local school?
A former superintendent. If tough decisions have to be made, all
of us have to be willing to face them.”“The question is,” he told the
crowd, “are we willing to look at things differently? Certainly I
am. I have no vested interest to protect.”
To See The Full Story GO TO:
http://www.causeonline.org/Nov01/Watkins-L&L3.htm
******************************
Congress Mulls Over Special
Education
Associated
Press
GREG TOPPO AP Education Writer Novenber 28, 2001
WASHINGTON (AP) - They've settled policy disputes over student testing,
bilingual education and helping students who attend failing schools. Now
congressional negotiators working on President Bush's education bill must
decide whether to guarantee schools billions of dollars in new money for
special education. The bipartisan group of bargainers planned a vote Friday on
an amendment by Sens. Tom Harkin, D-Iowa, and Chuck Hagel, R-Neb., that would
help settle the issue and go a long way in determining the bill's overall cost.
The Democratic-controlled Senate in the spring approved a guaranteed annual $2.5
billion increase for the Individuals with Disabilities Education Act, saying
the money should be kept safe from the yearly appropriations process. The House
voted to increase spending by half as much, but without the guarantee.
"There is not a superintendent or school board member in the country who
does not think they are facing crushing special education costs," said
Sen. Edward Kennedy, D-Mass. Opponents say the new money promised by the Senate
could lead schools to place more students in special education classes instead
of getting them help in regular classrooms. They also say the measure will not
guarantee that disabled students get the money they deserve, because it lets
schools spend half of the new dollars on other programs. Sen. Judd Gregg, R-N.H.,
and others want Congress to wait until 2002, when the act is to be
reauthorized. In April, a presidential commission on special education reform
will deliver its recommendations to Bush. "It is irresponsible to consider
such a dramatic change as making (the act) a mandatory spending program without
first reforming the special education system," Gregg said. The House and
Senate have passed separate versions of the legislation that provides most
federal support for K-12 schools. The House proposed spending about $24 billion
for 2002; the Senate approved $33 billion. Appropriations bills put the figure
closer to $22 billion. The federal government is spending about $18.4 billion
this year on elementary and secondary education. Lawmakers this week said they
had reached agreements on virtually all of the policy issues, including:
-Federal funds for low-income students in failing schools; students could use
the money for private tutoring, summer school or transportation to another
public school. Failing schools would be determined by persistently poor student
grades on annual reading and math tests in grades three through eight. -More
flexibility in how schools can spend federal funds; the bill gives states and
school districts the ability to spend up to half of their federal aid largely
as they see fit. Seven states and 150 school districts could participate in a
demonstration project giving them almost unlimited flexibility over all of
their federal funds. Lawmakers dropped a House-approved measure requiring students
with limited English skills to be taught in English after three consecutive
years in a U.S. school; instead, students could be taught in English and their
native language, but would have to prove competence in English after three
years. On the Net: Senate: http://www.senate.gov House: http://www.house.gov
Copyright 2001 Associated Press. All rights reserved. This material may not be
published, broadcast, rewritten, or redistributed.
http://www.brainconnection.com/SITEWare/2001/11/28/-----/5768-4053-Congress-Educat..php3
*****************************
The
Times Christmas Appeal
Why my son, 15, hates Christmas
Bob Noble, 43, a marketing consultant from Surbiton, southwest London, and
his wife Rosie have five children, including Harry, 15, who is severely
autistic and attends the Sybil Elgar National Autistic Society School in
Southall, West London. This is Mr Noble’s account of living with autism. My
son Harry hates Christmas. There’s no point giving him presents. He doesn’t
understand the concept. It upsets his routine. Harry was born in 1986, when our
first child, Amy, was 18 months. I have a clear memory of a christening when he
was 16 months — Harry kept calling me “Dada”. He can’t communicate with
language like that now. At 18 months he suddenly became remote. He lost the
words he had learnt, and began running round and round a pattern in the carpet.
He preferred flapping his hands and humming. When I’d return home from work,
Amy would rush up to see her Daddy, but Harry didn’t seem to notice. We were
told he was severely autistic when he was two. It was devastating. I love him
like my other children, but it is a one-way relationship. I don’t think he
understands what it is to love me back. I think he trusts me, and a few others,
to fulfil his needs. Anyone else he ignores. As soon as Harry’s feet touch the
floor at 6am he is bombing around, hopping or running. He never relaxes. He
loves to fill his time flapping. That gives him a buzz. He is a nice guy to be
with. He doesn’t ask for much. He is happy to be taken on long walks and enjoys
the beach. He is a very important part of my life. All those who work with him
enjoy his company. Having a child with autism is a great leveller. Harry has
taught me to appreciate the really important things in life. Autism puts
everything in perspective. However much money I make, it won’t cure him. We
wish Harry was normal. But we can never have that. Our youngest son asked my
wife “Why did God invent autism?” Neither of us has found an answer.
http://www.thetimes.co.uk/article/0,,2-2001552541,00.html
******************************
The
Times Christmas Appeal
Children in a world they don't understand
BY HELEN
RUMBELOW
THE art on display at the school for children with autism is not the
commonplace cheery murals. One shows a single black line cutting through a
confusing mess of symbols, another is a meticulous mosaic depicting a child
alone in a room. These children do not paint to make their parents proud,
because they find love difficult to understand, or impossible to show. The
drawings by pupils at the National Autistic Society’s Sybil Edgar School in
Southall, West London, are their first steps at expressing their isolation and
fear at being born into a world they cannot communicate with. The Times
is starting a Christmas appeal today to provide the National Autistic Society
with equipment that will help these children to make some sense of their lives.
This includes £30,000 needed for a sensory room at the Helen Allison School in
Kent. These darkened rooms, with a light floor and musical wall, have proved
fascinating to children with autism, giving some their first chance to reach
out of their isolation. Another school, Radlett Lodge, in Hertfordshire, needs
£7,500 for computer software. Children with autism feel a natural affinity with
computers because they do not show emotion and are consistent in their
responses. Many find it much easier to learn on a computer than from a teacher.
Children with autism often sing even if they cannot speak. Musical patterns can
unlock communication for them. Daldorch House School in Catrine, East Ayrshire,
needs £3,000 to buy instruments for a music therapy room. The number of people
living with autism has risen almost tenfold in the past ten years. Present estimates
are that one in a hundred people have some kind of autism: more than half a
million people in Britain. This growth in the condition means that demand for
help, support and specialist education for the sufferers far outstrips supply.
The National Autistic Society was founded by one desperate mother and a small
group of like-minded parents in 1962. The disability had only just been
identified and the pioneering Sybil Edgar School set up in a family’s front
room was led by parents struggling to understand what had happened to their
families. Now 60,000 people a year are helped by their six specialist schools,
a helpline and an employment service; nonetheless, Britain’s foremost autism
charity is given almost no public donations. Through decades of trial and error
the National Autistic Society schools have developed an education system that
shows clear benefits to the children fortunate enough to attend them. They
receive children who for years had been thought deliberately naughty, dangerous
or mentally ill. The improvement in them is often remarkable. At Christmases
past Times readers have been extraordinarily generous. Last year they
raised £94,000 for Cancer Bacup, funding two nurses for the charity’s helpline;
and £102,000 for the Royal Free Hospital’s research into neuroendocrine cancer.
When Hurricane Mitch tore out the heart of Central America three years ago, our
readers contributed more than £23,000 to pay for the building and transport of
a new bridge. This Christmas readers have the opportunity to build bridges of a
different kind.
http://www.thetimes.co.uk/article/0,,2-2001552543,00.html
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Leading
article
Another world
The Times appeals on behalf of autistic children
It was at a birthday party that Jamie’s mother first realised there was
something seriously wrong with her three-year-old son. She picked up a musical
toy to show him how it sparkled. All the other children at the party came
running to see it. Jamie just sat there. All around, the children were laughing
and dancing and singing. Yet this one little boy seemed to hear nothing, react
to nothing. It took three years, but eventually Jamie’s parents found out what
was the matter. Their son was autistic. This year The Times Christmas
Appeal provides the opportunity for readers to help Jamie and the many
thousands who suffer from the same disease. The Times is appealing on
behalf of the National Autistic Society which, established 40 years ago by a
handful of parents in the back room of one of their homes, has grown to become
a vital help and support to sufferers and their families. Jamie looks like any
other child. Sadly, he is very different from them. Autistic children have
difficulty forming social relationships, often appear indifferent to others,
struggle with verbal communication and, perhaps hardest of all for their
carers, frequently lack any imagination, engaging in simple copied activity
over and over again. Locked in his own world, Jamie cannot live an ordinary
life. Yet autistic children, even those who suffer most severely, are not
beyond help. There are things that can be done. Jamie was excluded from nursery
school because of his behaviour. His parents needed to find someone who
accepted that he was not just a naughty child, totally obsessed with dinosaurs.
Eventually they did. Jamie now attends a National Autistic Society school. A
young child who once bewildered all who cared for him now benefits from the
understanding of professionals. He benefits, too, from the equipment the school
provides. In the sensory room he can feel safe, touching the fabrics to create
sound, choosing which senses he wishes to stimulate. He can feel calm. There is
even some eye contact, some laughter, some speech. These schools need help if
they are to help children like Jamie. The number of children having some form
of autism diagnosed is rising all the time. There are now more than 500,000
families in Britain whose lives have been touched by the disease. The efforts
of those struggling to cope have been heroic but they cannot succeed on their
own. The help they are now seeking is relatively modest, the donations to help
them to equip a sensory room of the sort that helps Jamie, money for musical
instruments, money for computer software and somewhere where children can learn
to cook. They should not be denied this help. Britain is in the grip of a great
debate about how much it should spend on healthcare and how that money should
be provided. Some diseases, however, are incurable. The lives of severely
autistic children will always be blighted by this affliction. No amount of
money will cure it, no cure is even on the horizon. Early diagnosis and expert
care can, however, greatly improve the quality of life of all who suffer from autism
and all who, suddenly and without warning, find themselves struggling to help
another to cope. Christmas can be a particularly hard time for those with
autistic children. They see in the eyes of others the pleasure in life denied
to their own. So much money is being spent everywhere at Christmas. This year
just a little of that money could make a big difference to some of Britain’s
most unfortunate children.
http://www.thetimes.co.uk/article/0,,56-2001552637,00.html
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