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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Tuesday December 11, 2001
INDEX:
* Autism family's
anger over MP
* Bright but shunned: Talented, quirky children struggle with a form
of
autism called Asperger's
* 'Resign' call to minister in new expenses row
* Evidence-Based Medicine
* Meeting the Unique Concerns of Brothers and Sisters of Children
with
Special Needs
******************************
Autism family's anger over MP
CHRIS HOLME A MOTHER who shares the kind of
financial burden faced by Nigel Griffiths and the relatives of thousands of
autistic people says the cost of private treatment is a disgrace.Christine
MacVicar, of Bridge of Weir, in Renfrewshire, spent £5000 last year alone on
private specialist tests for her son Andrew, 39, which the NHS would not
countenance. The cost of the treatment far outweighs anything the state
pays.Andrew has Asperger's syndrome, a form of autism where the patient retains
speech and intellectual capability."There are no people in the NHS to
treat that and he was not even diagnosed until he was 29," Mrs MacVicar
said. Andrew stays at home and receives £375 a month in disability living
allowance and a further £227 in income support.Mrs MacVicar said much of this
was swallowed up in treatments for her son, who has 30 food allergies including
an intolerance of wheat and dairy products. He also has ME, leading to chronic
exhaustion."We have to pay for these because they are not recognised by
the health service," she said. "It is a disgrace."The family had
been forced to go for private consultations by doctors and specialists who did
recognise the condition."Mainstream medicine does not do anything and they
will not let us have access to what we call intelligent medicine. It has been a
fight for every single thing that they have conceded - and that has been very
little," Mrs MacVicar said. "This is the only branch of medicine
where they never look for the cause. Andrew has nothing to meet his needs. He
has never had a care package and he is now nearly 40."She said the family
had spent £5000 last year alone on allergy investigations and other tests, but
these had brought considerable benefit. "There has been a remarkable
difference in him since his last lot of treatment," she added.Mrs
MacVicar, 58, said there was a daily bill of 85p for a carton of soya milk and
£80 a week on special foods. Further supplies of vitamin and other dietary
supplements added to the bill."We have to pay for these ourselves - the
health service won't even test for the allergies. It costs £26 for a bottle of
fatty acid supplements which we know are going to make a difference but that is
half of someone's weekly income support and you can't get it from your
doctor," she added.Mrs MacVicar sits on an all-party group seeking support
from the Scottish Parliament to get the Scottish Executive to draw up a protocol
for investigating and treating autism and make these available to all
patients."I can fully understand Nigel Griffiths' position. He has
accepted his sister's condition and we are trying to get Andrew's condition
under better control, but the same financial pressures are there."Jane
Hook, chairwoman of the Scottish Society for Autism, said the £10,000 a year
claimed by Mr Griffiths probably covered nothing like the total cost of his
sister's care."I would be very surprised if it did. Care can cost thousands
of pounds a week. He has been trying his best, poor soul, to help his sister
and I feel very sorry that this has come out in this way."It is an
absolutely horrific situation for many families. In children, autism is
difficult because it is an invisible handicap. Things have improved for young
people in recent years but for adults it is absolutely appalling."Mrs Hook
said it could cost £50,000 a year for a residential place for a child and
£130,000 to provide the necessary round-the-clock care at home for an adult.
"But the major problem is finding the right services at all because in the
most part, they don't not exist. Unless you have money, you can't buy services,
but often they are not there to buy," she said.Mrs Hook said most local
authorities did not provide services for adults with autism because they viewed
them as a resource drain. "For families it is not just the financial cost
involved - there is also a huge cost to individuals and families in terms of
the personal stress on them," she added.
http://www.theherald.co.uk/news/archive/10-12-19101-1-55-37.html
******************************
Bright but shunned:
Talented, quirky children struggle with a form of autism called Asperger's
By ANNE WILLIAMS
The Register-Guard
YOU REMEMBER THAT kid from school - the one who was
obviously smart, but painfully awkward, stunningly unathletic, profoundly
weird?Other children could sniff out his vulnerability in a heartbeat, making
him the favorite object of ceaseless teasing and cruel jokes. They could always
count on a satisfying reaction.
Nan Lester calls her son Max her hero. "He has a depth
of character that I don't see in typical people," Lester says. "If
you've ever known someone who has to come up against terrible adversity,
there's this strength of character. That's what I see in my son."
On a typical day at school, Max ricochets between moments of
attentiveness, quiet "breaks" on a rocking chair where he thumbs
through books, and near-meltdowns. Not going into sensory overload is a
constant challenge for the estimated one in 300 to 500 children, four out of
five of them boys, who are affected by the neurological disorder.Photos: NICOLE
DeVITO / The Register-Guard
You may not have thought about it much at the time, but
school for that kid must have been an unending chamber of horrors.Maybe you
wrote him off as a geeky eccentric, no good at life outside his own head. What
no one guessed then was that he may well have suffered from a perplexing
neurological disorder called Asperger's syndrome.Asperger's, sometimes dubbed
"the little professor syndrome," is a mild form of autism with a curious
medley of characteristics: narrow, sometimes obsessive, interest in particular
subjects; average to sky-high intelligence; verbal adroitness; difficulty
coping with change; clumsiness; unusual sensory perceptions; and - most evident
to peers - striking social ineptitude. The vast majority of sufferers are
boys.In 1944, Austrian physician Hans Asperger first described the syndrome
that carries his name, but it wasn't until 1994 that Asperger's made it into
the official diagnostic manual of the American Psychiatric Association.Even
just five years ago, the vast majority of educators didn't have a clue what was
going on with these idiosyncratic children, whose crossed wiring can lead to
severe behavioral problems, academic failure and depression. Nor did they know
how to help them.That's rapidly changing. In the past couple of years, there's
been a veritable explosion of books, media stories and seminars on Asperger's -
so much that it risks becoming a "diagnosis du jour."And here in Lane
County, a newly formed and fiercely committed group of parents is working on
overdrive to make sure local educators understand the disorder and do what's
needed to protect and teach their kids.But it's no easy task. While its profile
is growing exponentially, Asperger's syndrome is still an emerging, complex,
often controversial diagnosis - one on which experts don't always agree.A
grandson's diagnosisTani Proctor went to her first meeting of the 
Tani Proctor sees the characteristics of Asperger's syndrome
in her 8-year-old grandson, Levi, who attends Fairfield Elementary School.
Asperger Advocacy Coalition last month, and it took her
breath away. So much of what she heard reminded her of sweet Levi, the apple of
her eye, her cute-as-a-button, 8-year-old grandson, who's been banned from the
school bus because he insists on shedding his clothing.Proctor, 54, adopted
Levi as an infant after her daughter, who was then battling drug addiction,
lost him to the state foster care system. Problems surfaced early. A sudden
loud noise would make him shriek and tremble. Behavior problems constantly
flared up with baby sitters and at school.Over the years, as she struggled to
learn the source of Levi's anxiety, she occasionally heard Asperger's
mentioned. While evaluations found autistic behaviors, they were never
pronounced enough for a full-fledged diagnosis. Then in March, a local
psychiatrist pinpointed Asperger's.Levi exhibits many of the behaviors
associated with Asperger's. He's so sensitive to the feel of shoes and certain
shirts, for example, that he can't bear to keep them on when he's in stressful
situations - like riding the school bus. "Last summer we lost six pairs of
shoes," said Proctor, a receptionist at a medical clinic.Levi is
identified as Talented and Gifted at his school, Fairfield Elementary, and
Proctor remembers him reading a nursing manual at 5. He can talk incessantly
about a subject he's interested in, oblivious to the unspoken social cues a
weary listener may be communicating. He talks too much, touches too much and
simply has no idea how to play with other kids."The thing I would like
people to know about this is that the social isolation of these kids is
absolutely heartbreaking," Proctor said recently at the manufactured home
she shares with Levi and her fiance, Glen Steger, in the Bethel neighborhood.
"I can't even talk about it without breaking down."Levi desperately
wants friends but is consistently rejected by his peers. And it's gone beyond
that. During the past few years, kids have locked him in a parcel post box,
burned his books and bashed him on the head with a bicycle helmet, to name just
a few indignities.On Halloween, some neighborhood kids knocked on the door.
Levi was thrilled, Proctor recalls, and ran to greet them, agog over their
super-hero costumes."And they said, `Oh, God, it's Levi's house - we're
out of here,' " Proctor said, her eyes filling with tears. "The look
on his face ... He was just devastated."The Bethel School District hasn't
identified Levi as autistic, and he doesn't have an Individualized Education
Program (IEP) - a federally mandated plan outlining the learning modifications
and needs of a child who qualifies for special education services. Under
federal law, all children are entitled to a "free and appropriate"
public education, and an IEP is meant to ensure that happens.Proctor is certain
the psychiatrist got it right, and she'll push for another evaluation."I'm
finding out I have rights I didn't know I had," Proctor said.The
misunderstood maladyEmpowering parents to prod schools was one of Nan
Lester's chief aims when she launched the Asperger coalition last March. Her
8-year-old son, Max, was diagnosed with Asperger's last year. She's urged the
staff at his school to learn about the disorder and implement a suitable
educational plan. Despite disagreements, she is reasonably satisfied with the
response."(Asperger's) is a completely different animal," Lester
said. "People are starting to get that."While they may be bright and
talented, kids with Asperger's - like kids with any disability, be it a hearing
impairment or severe autism - often need a lot of special help and attention.
Too often, experts say, schools misunderstand or disregard those needs,
sometimes with devastating consequences.For example, because they are prone to
outbursts born of frustration, these children are often lumped in with kids
with behavioral problems - a potentially explosive mix."Their verbal
skills are very strong, but often the problem is their other skills, especially
their social skills, are horribly, horribly delayed," said Dr. Fred Volkmar,
a Yale University School of Medicine professor who co-wrote the diagnostic
definition of Asperger's in 1994. "Teachers see the inappropriate
behavior, so they'll put them in a class with really bad boys, which is really
putting the perfect victim in with the perfect victimizers."Volkmar said
he was initially skeptical of whether Asperger's syndrome was sufficiently
distinct to qualify as a separate disorder, but his research has made him a
believer. He questions whether it's as common as some believe, though."I
think if you're talking strict diagnosis, it's one in 5,000 to 10,000," he
said. "If you're talking loosey-goosey, one in 500. So the truth is
somewhere out there, between those two."Dr. Brenda Myles, an associate
professor at the University of Kansas Department of Special Education,
disagrees. She thinks the numbers could be as high as one in 200."I think
there is a danger of over-diagnosis, but at this point we are so
under-diagnosed that I'm not concerned about that," said Myles, who has
written and lectured extensively on the subject. "I think probably over
the next five years, we're going to be hearing more about Asperger's than
autism."Peer, teacher reactionsAs soon as Lester placed an ad for
the coalition in the newspaper last February, the calls began to pour
in."Each phone call was at least an hour, and every one was filled with
pain," she recalled. Now she has about 50 families on the mailing list,
and it's growing fast.At last month's meeting, and in subsequent interviews
with coalition parents and kids, similar themes emerged: Persistent behavior
and discipline problems, often unleashed by an unexpected change or sensory
overload and misunderstood by school administrators; run-ins with other kids;
severe depression, especially once kids hit middle school.Linda Cochrane, a
single mother, has a 16-year-old son with Asperger's. He can't bear to hear
swear words, she says, and when he does, he'll often count to four as a way to
"cancel" it out and defuse his anger. A handful of kids at his Eugene
high school delight in trying to set him off."They're very good at knowing
when to do it, how quietly to do it and how not to get noticed doing it,"
she said.While the disorder may elude or even charm adults, kids zero in on it
right away, said Rich Coolman, a diagnostic pediatrician at the Child
Development and Rehabilitation Center who works with children with Asperger's
and other disabilities."They pick them out in a second as odd and easy
targets," he said.Coolman also has a 15-year-old son who was diagnosed
with Asperger's last year. He feels a little awkward that the diagnosis was so
long in coming, given his own profession, but such is the subtle and slippery
nature of Asperger's. His son, who was constantly locking horns with teachers
through school, had previously been diagnosed with Attention Deficit
Hyperactivity Disorder. Now that he's on an IEP, he's doing better.Because they
worry their kids will be further ostracized, both Coolman and Cochrane asked
that their sons' names and schools be withheld from this
article."(Teachers) find these kids odd and quirky and fascinating,"
Coolman said. "Then about a month into the term, they start seeing them as
willful and manipulative."Nothing could be further from the truth, Coolman
said. "They're not plotting ahead," he said. "They're in a
constant reactive mode to what's happening around them. They're basically
innocent souls, just trying to deal with the world around them."Parents
acknowledge the difficulties schools face, especially given current fiscal
realities. An increase in the number and percentage of special education
students was one of the reasons the Eugene district had to cut $3 million from
its budget this year.But that doesn't let schools off the hook, parents insist.
Some of them are so frustrated they're thinking of pulling their kids and
home-schooling them, particularly once they reach middle-school age.Educational
modificationsDuring the past few months, Bob Cattoche, the Eugene School
District's special education administrator, has gotten an earful about
Asperger's syndrome. Partly because of parental concerns, but also because the
district has seen a staggering rise in the number of kids with autism, he's
pulled together a loosely organized "autism team," consisting of
special education administrators and teachers, occupational and speech
therapists and autism specialists. Ten of them traveled to Portland in October
to a conference on Asperger's, with Dr. Myles as the keynote speaker."I'm
beginning to understand kids with Asperger's have some pretty unique
needs," said Cattoche, who has earned guarded praise from coalition
parents for his efforts thus far. The Eugene district has 140 kids identified
with autism, including those with Asperger's. Cattoche doesn't know how many
have Asperger's, but said he plans to survey schools to find out.One fact
experts do agree on is that every child with Asperger's is thoroughly unique.
Nonetheless, Myles believes there are certain educational modifications that
generally work well. For example, kids with Asperger's don't like surprises, so
schools should try to shield them from pop quizzes or last-minute
assemblies.These kids should also have a "home base," she said - a
quiet nook where they can go when they're anxious, perhaps in a counselor's
office or library."This must be nonpunitive," she said. "This is
not a time-out, a negative. This is positive."Social skills training is
critical, she said. Many children with Asperger's have trouble reading facial
expressions, telling white lies, holding a reciprocal conversation or
respecting personal space. But those things can be learned, she said.Myles
believes that, with the necessary accommodations, many kids with Asperger's can
spend most if not all of their time in the regular classroom, although some
benefit from classes designed specifically for kids like them.The Seattle
School District won the hearts of Asperger's families when it launched magnet
programs at four elementaries and one middle school targeting kids with
Asperger's and other forms of high-functioning autism. The kids divide their
time between mainstream and specialized classes. Cattoche and members of his
autism team plan a trip up there next month.In Lane County, Springfield is the
only school district with something similar in place. Located at Maple
Elementary School, the class - new this year - serves eight children in grades
1, 2 and 3, and incorporates many of the techniques Myles recommends.On a
recent morning, the children got a group lesson in reciprocal conversation.
Cheryl Lockard, a speech and language pathologist who regularly visits the
classroom, would bring up a topic and the kids took turns telling something
about it."Talking about the same things is called making sense,"
Lockard told them. "If someone is talking to you about what they had for
lunch, and I'm talking about my math homework, are we talking about the same
thing? No, we're not."A comfortable spaceWhile it's safe to say
socializing is difficult for all kids with Asperger's, often they manage to
find a niche. For some, it's the chess club or computer club.For 13-year-old
Clark Wozich, it's theater. A seventh-grader at Pleasant Hill Junior High,
Clark is playing roles in two productions at a community youth theater.Clark
was diagnosed in October, but his mother, Roberta Brown, said they knew before
then. His school experiences have been "spotty," she said, but things
are going reasonably well this year.Other kids tell him he talks too much, but
he hasn't been taunted too much lately, he said. "They usually say, `Shut
up,' " said Clark, a handsome, muscular boy. "That's the one thing I
hear a lot."Clark is crazy for film - he hopes to become a director one
day - and has a zillion adventure movie plots in his head. In a recent interview,
he launched into them, rapid-fire, only to catch himself a few minutes
later."Can we get back to Asperger's syndrome?" he asked. "I
don't want this to be the story of my life."Clark is eager for other
people to learn about the disorder - and to appreciate the special qualities it
imparts. "I think Asperger's syndrome is a gift, even though at some
points it is difficult," he said. "People with Asperger's are just
the same as everybody else, even if they're better at some things."
RESOURCES
The Asperger Advocacy Coalition meets the second Tuesday of every month at 7 p.m. at Autism
Training & Support Inc., 1355-B River Road, Eugene. For information or to
be added to the mailing list, call Nan Lester at 345-3467.
http://www.registerguard.com/news/20011209/1a.aspergers.1209.html
******************************
'Resign' call to minister in new expenses row
By Tom Peterkin, Scotland Political Correspondent
(Filed: 10/12/2001)
A MINISTER was under pressure to resign last night after he was found to have
used taxpayers' money to look after a disabled member of his family and send
her on holiday.Nigel Griffiths, a Trade and Industry minister, is the fifth
Labour politician - including the party's former leader in Scotland - to become
embroiled in controversy over office expenses.
Nigel
Griffiths: claimed £40,000 worth of rental expenses
He is alleged to have claimed £40,000 worth of rental expenses from the Commons
over four years to which he was not entitled.He did not declare to the
Westminster authorities that he had bought his Edinburgh constituency office
outright in 1997 then continued to claim £10,000 a year.Mr Griffiths, MP for
Edinburgh South, whose minsterial salary is £78,000, transferred the money into
a trust fund set up on behalf of his sister Hilary, who suffers from
autism.Aspects of the case are similar to events that led to the
resignation of Henry McLeish as Scotland's First Minister.Mr Griffiths's
financial arrangements differ from those of Mr McLeish, who said he had been
guilty of a "muddle" not a "fiddle". Mr McLeish always
insisted that his expenses had been devoted to running his office and that he
had not gained personally.The latest "muddle" will be embarrassing
for Labour and Gordon Brown, the Chancellor, who is a close friend and mentor
of Mr Griffiths and Mr McLeish.Jacqui Lait, the shadow Scottish secretary,
said: "While it is very noble to support a disabled member of your family,
I don't think that it is necessarily the function of the office costs allowance
to do so."Other people who have equally disabled relatives do not have
that sort of money and it is taxpayers' money.She added: "All the MPs
involved in this row are Scottish and the only conclusion that one can draw is
that the long term hegemony of the Labour Party in Scotland has led to an
arrogance that allows them to believe that they can behave
inappropriately."Pete Wishart, the Scottish National Party's Chief Whip at
Westminster, said: "This is an extremely serious matter, and Mr Giffiths
must consider his position as a Government minister."I will now be writing
to the Westminster Standards Commissioner, Elizabeth Filkin, calling on her to
mount a full investigation into the way Mr Griffiths has used these allowances
and failed to register this interest."Mr Griffiths also did not declare
that he received £4,000 from Angus Mackay, a Labour MSP, for the use of storage
space in his office, a phone line, display space in the window and the use of
the office once a month for surgeries.After Mr Griffiths bought the office in
Minto Street for £68,000 he channelled his Westminster office allowance into
the Hansel Village Trust.Mr Griffiths and his wife, Sally, are the sole
trustees of the trust, which was set up to look after the MP's older sister.
Weekend reports said that Mr Griffiths admitted that the trust had been used to
take his 49-year-old sister on trips and to buy televisions and videos for
her.Mr McLeish stood down as First Minister after it emerged that for 14 years
he had failed to declare that he was sub-letting his office when he was MP for
Central Fife. He claimed
£36,000 worth of expenses over that period.Jim Murphy, the Eastwood MP, and
Russell Brown, MP for Dumfries, are
under investigation by the Standards Commissioner. Both MPs claimed full office
allowances, but failed to mention to the authorities that half the rent was
being paid by Labour MSPs sharing their offices.Mr Murphy sub let his office to
Ken Macintosh, while Mr Brown shared an office with Elaine Murray, the deputy
minister for tourism, culture and sport in the Scottish Parliament.Under
Commons rules, Mr Griffiths should have declared in the members' register of
interests that he owned the office. He also allegedly broke the rules in
failing to declare that he was diverting office expenses into a trust fund.The
rules state that MPs who own their offices can claim rent from the Commons, but
they must tell the Fees Office that the property belongs to them and arrange
for an independent rent assessment.MPs are required to declare any money they
receive for sub-letting their office.Mr Griffiths said the Commons Fees Office
was aware of his office arrangements and he did not believe that there was any
need to declare his property and the income it generated because there had been
"no substantial third-party involvement".Anne McGuire, the MP for
Stirling, was also caught up in a separate row when she was overcharged for a
month's office rent by Labour Party Properties Ltd, a commercial arm of the
party.
http://portal.telegraph.co.uk/news/main.jhtml?xml=/news/2001/12/10/ngrif10.xml&sSheet=/portal/2001/12/10/ixport.html
******************************
Evidence-Based Medicine
By JACK HITT
hen
visiting our family doctor, most of us feel secure in the belief that modern
science has purged medicine of such practices as cupping and bloodletting. But
according to a recent article in the journal Patient Care, ‘‘Some experts
estimate that only 20 percent of medical practices are based on rigorous
research evidence.’’ The rest are based on what has been published in books
repeatedly without independent testing – or what doctors have always said
should work. In other words, it’s a kind of folklore.A revolution is erupting
in the wards of practical medicine these days, one defined recently by The
British Medical Journal as ‘‘the conscientious, explicit and judicious use of
current best evidence in making decisions about the care of individual
patients.’’ The revolution is called evidence-based medicine, or E.B.M., and
many traditional treatments are being run through the machinery of the
scientific method – and being found wanting. One common E.B.M. approach is
meta-analysis: collating data from far-flung studies to come up with a
definitive answer to a medical question. Such studies are overthrowing some
conventional wisdom. Mammogram screenings? They don’t save lives. Remember the
placebo effect? It doesn’t exist. E.B.M. is also credited with validating some
simple cures. Most people know that if you have a heart attack, you should
immediately take an aspirin. Thank an E.B.M. study for proving that this
works.After colds, the second-most-common reason for a visit to the doctor is
lower-back pain. The ‘‘treatment’’ has always been bed rest. Why? Because, as a
recent article explained, ‘‘The notion that rest is therapeutic and will
relieve pain dates back to Hippocrates.’’ But now that E.B.M. studies have used
science instead of oral tradition to test this notion, they have found that bed
rest ‘‘may delay return to functional status.’’ What works better? Light
exercise and getting back on your feet. This past June, the Agency for
Healthcare Research and Quality integrated the no-bed-rest approach into its
guidelines. This new standard of care, which will probably save billions of
dollars in unnecessary sick leave, marks the end of 2,400 years of misguided
treatment. E.B.M. is yet another idea that can be credited to the computer
revolution. Doctors have long known that they learn very little after med
school when their exhausting schedules and the baffling profusion of 4,000
monthly professional journals make it nearly impossible to keep up with
innovations in treatment. The E.B.M. movement began when six doctors in Canada
came up with the idea of skimming the most dependable studies and crunching the
results into an accessible, reliable database. Indeed, in the wake of E.B.M.,
journals are filling with terms that sound almost anthropological to describe
longstanding treatments: ‘‘local custom,’’ ‘‘witch-doctoring,’’ ‘‘myth.’’ Or as
one article this fall put it, ‘‘This process of examining beliefs that have
been based primarily on teaching and empirical experience rather than evidence
has been compared to stripping the curtain away from the Wizard of Oz to reveal
an ordinary man.
http://www.nytimes.com/auth/chk_login
******************************
Meeting the Unique Concerns of Brothers
and Sisters of Children with Special Needs
by Donald Meyer, Director, The Sibling
Support Project, Children's Hospital and Regional Medical Center, Seattle,
WashingtonIn the United States, over 5.8 million children have disabilities.
Most have brothers and sisters. Throughout their lives, these brothers and
sisters will share many--if not most--of the same concerns that parents of
children with special needs experience, as well as issues that are uniquely
theirs. These concerns are well known to their parents and have been documented
in the research and clinical literature. Among the concerns mentioned by
authors, parents, and siblings themselves include:
To See The Full Story: Meeting
the Unique Concerns of http://www.seattlechildrens.org/sibsupp/meetingtheconcernsof....htm
******************************
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