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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Tuesday January 22, 2002
Special Edition
INDEX:
* We are looking for Individuals for State
Autism Ambassadors
* Expanding Autism Infant and
Pregnancy Private Research More info
* Natasha Walter: If only
they'd treat us like adults
******************************
We are looking for Individuals For State Autism
Ambassadors
Many states are still open and we need your help to fill these positions.
Individuals with autism in your state need your help! We are building a
very strong team in each state. No skills are needed, we will train all of the
ambassadors. Many parents are begging for direct changes within your state.
Maybe you know a parent that needs help, maybe you are a parent of a child with
autism and would like to see better programs or resources in your state. This
is a great way to get involved, while helping your child you will help other
individuals with autism within your home state.
If you are a parent or professional looking for an opportunity to help
individuals with autism or join a national organization for autism, get
involved with the autism ambassador project. We have many programs and projects
that will directly change resources in your state.
In the State Ambassador Program One person will be appointed by the US Autism
Ambassador to represent each state as a State Ambassador and one person will be
appointed to be the State C0-Ambassador to assist the State Ambassador in their
Autism Endeavors within their home state.
Currently this is a volunteer position, which we hope to change within a
one-two year sabatorial to a paid position. This will be determined by the US
Autism Ambassador
State Ambassador Duties
As a State Ambassador each person will have many duties to perform and execute
ranging from awareness, legislative, media, guest speaking on occasion,
Implement the First Steps Autism Action Plan and Programs, and more.
Each state Ambassador will work closely with the United States Ambassador and
Co-Ambassador, Autism Council, and more.
We will
provide master packets, materials, online support, toll free hotline for
answers, and everything you will need to accomplish and fulfill your duties as
a State Ambassador.
Each State Ambassador will take part in Direct changes within their state to
help make a difference in their home state to support and bring unity among all
states.
If you are interested in the State Ambassador position for your state please
contact AutismAwakening@aol.com to receive an application or simply fill out
the form below.
US Autism
Ambassador
State Ambassador Program
1900 K Street SW
Cedar Rapids, Iowa 52404
Phone: 319-364-2687
To sign up as an autism ambassador, Please fill
out the form at the bottom of the page in the link provided below: We are still
looking for an autism ambassador and CO-ambassador in your state.
State
Autism Ambassador Project
******************************
Expanding Autism Infant and
Pregnancy Private Research
Iowa Local Company Is Expanding Autism Research In the United States
Since we
opened our new research on Monday questionnaires have been piling in! We are
seeing some great results. If you have not filled out a questionnaire yet
please take a few moments to complete this form. The time spent is about 5
minutes, the time is well worth the results we are retrieving from the forms,
it can help many children in the future. We realize this will not be a cure but
it will go along ways in early intervention and help find some of the pieces to
the autism puzzle.
Through
private research since early 2000 Autism Awakening is finding through private
research that we have found some of the earliest detections for autism spectrum
disorders. In 2001 we found many simular results in out questionaires and
newborn tests that parents submitted results of.
What we have found are many simular test results in children with autism in the
newborn records as well as toddler to current testing records and parent
information. In the near future we may be able to detect autism as early as at
pregancy and birth for children at risk for autism. Please take a few minutes
to fill out the questionaire form in the web site located at
Autism
Infant and Pregancy Research Questionaire
Future children with autism may benifit from your answers!
We
have upgraded our old research questionaire to include more important
questions. With the answers we have gained from our old questionaire we are
finding that many of the individuals with autism have very simular test results
in infancy, as well as toddler. We believe we may have found some of the
earliest detections as early as at pregancy and birth for children at risk for
autism from our informal study of 750 parents and children with autism.
Doctors,
nurses, and other professionals can submit information on their clients on the
same form, please make sure to indicate who is submitting the information, for
our records. Please place your name and title in the first line fo the
questionaire.
We are writing a grant proposal next week to cover the increasing costs of this
research. The expansion of this research will prove to be a worthy endeaver
from the results we are already seeing.
If you are interested in quarterly information on statistics from this form
please use the bottum update form to submit request. You must be involved in
the research and submitted a form to recieve updates.
Autism
Infant and Pregnancy Research (Web Site home page Direct Link)
http://autismawakeninginia.bizland.com/autisminfantandpregnancyresearch/index.html
******************************
Natasha Walter: If only they'd treat us like adults
'It was odd that Cherie Booth and Alan Milburn decided to keep their own
children's experience with MMR a secret'
20
December 2001At first, I just didn't get the whole furore about the measles,
mumps and rubella vaccine. I wondered if the parents who were scared of the jab
weren't just ignoramuses, the kind of people who would have shied away from the
smallpox vaccine in the 19th century. I even wondered if those who thought
their children had developed autism after the vaccine were just looking for
somebody to blame for their children's difficult behaviour. But I feel rather
differently about it now.
That's partly, of course, because I've had no choice but to start following the
debate in more detail. My daughter celebrated her first birthday last weekend,
an event that is now marked not just by balloons and a cake boasting a solitary
candle, but also by a little blue slip fluttering through the door, requesting
that you make an appointment for the triple jab as soon as possible.
But it's also because I can't help feeling that the Government is conducting
this debate in the most absurd way. Why does it feel that the best way to put
the kerfuffle to rest is just to shrug off parents' concerns? In so many other
areas of policy, the Government has learnt that it doesn't pay to dismiss the
mainstream concerns of the electorate.
Yes, politicians are happy to ignore what you say if you seem in any way on the
fringes – too liberal, say, or too green, to represent their target voters. But
the concerns of the centre ground usually finds a willing ear. That's why it's
so bizarre that there has been so little attempt to meet the demands of the MMR
lobby, since it's a centre ground lobby if ever there was one. It's composed of
worried parents who prefer to make their views known by personal choice rather
than public protest, and their concerns have been aired throughout the media,
from Private Eye to the Daily Mail. But when it comes to the MMR
vaccine, the Government and the medical establishment have chosen to display a
withering disregard for these pockets of popular dissent.
This dismissive spirit surfaced again yesterday when Tony Blair was challenged
in the Commons to say whether his baby, Leo, had received the MMR vaccine. We
can all sympathise with his desire to keep his son out of politics – but why
does he feel that on this issue he can't talk freely? Unless he does, there
will be continued speculation, however unlikely, that he or Cherie has decided
not to go with the vaccine and that they are now terrified of putting a spanner
in the Government's propaganda machine.
Of course, if the Government was relying wholly on research rather than spin to
damp down the debate, then it wouldn't matter a bit what any individual
politician or public figure had decided to do. But rather than launching the
massive research projects that some respected doctors say are necessary to put
the fears to rest for good, the Government has chosen to support rather less
conclusive studies and then to pour its resources into promoting the vaccine.
It launched a £3m campaign to increase uptake earlier this year, in which, for
instance, not giving your child the vaccine was compared to leaving a baby in
the path of a tiger.
But there is a very obvious drawback to relying on propaganda rather than
research when it comes to health. It doesn't work. Too many people have become
too sceptical about the establishment's record on public health to shut up just
because the Government launches a smart video.
And this scepticism isn't just confined to the chattering classes of England's
south-east. Today it was announced that Lanarkshire health authority has sent
out letters to all parents in its area whose children haven't had the jab. It's
understandable that the authority is getting worried: uptake in the area is
just below 87 per cent, the lowest since the vaccine was first offered, which
makes a serious outbreak of measles a real risk. The letter's message is, above
all, fear: it tells parents they may have forgotten how serious such diseases
can be.
But I don't think parents have forgotten. Those who choose not to take up the
vaccine are well aware of the dangers of measles and mumps, but they are also
now unnerved by the vaccine itself. In such a climate, where fear lurks on
either side, scaremongering cannot possibly be the right approach. If the
medical establishment really wants to increase the uptake of the vaccine, they
will eventually have to try the only other tack. They will have to engage with
the dissenters.
Why is this so very difficult for the establishment to contemplate? The dissenters
are not mavericks or madmen. They are respected professionals working in
various fields, from general practice to specialist clinics to epidemiological
research. None of them, it is worth noting, are saying they are absolutely sure
there is a link between autism and the vaccine for measles, mumps and rubella.
No, they are suggesting only that a link might be possible and they are stating
that more research should be done.
Even Dr Andrew Wakefield, who started the whole controversy in 1998 when he
published a study that connected Crohn's disease and autism with the MMR
vaccine, put it forward only as a hypothesis. His study concluded: "We did
not prove a link between measles, mumps and rubella vaccine and the syndrome
described. Virological studies are under way that may help to resolve this
issue." But even such reasoned dissent is impossible in the present
climate, and earlier this month Dr Wakefield felt obliged to leave his job at
the Royal Free and University College Medical School, due to "political
pressure" on himself and his colleagues.
Similarly, the GP who was called to the General Medical Council's disciplinary
body earlier this year for offering separate vaccines, Dr Peter Mansfield,
never claimed to be privy to some superior knowledge about the triple jab's
safety. "I offer no view on whether or not it is safe," he told anIndependent
journalist who visited him. "But it is perfectly reasonable for parents to
ask for separate vaccines."
And Professor Walter Spitzer, who has now become one of the great heroes of the
dissenters, has described himself only as a "worried agnostic". His
opinion, as an internationally acclaimed epidemiologist, is that "there
has not been a single properly designed, properly executed, properly analysed
epidemiological study published since this controversy became visible. A proper
study needs to be done."
More research! More information! That is the cry of the dissenters. It's hardly
going to bring the establishment crashing down, is it? So why can't the Government
go for it, and announce a large-scale international study along the lines that
Professor Spitzer has recommended, in which literally thousands of children's
records should be retrospectively examined, each coupled with its relevant
controls, and the possible links finally ruled in or out?
Sure, even in the absence of such studies, most parents, myself included, will
conclude that the evidence still tends more to the Government's side, and we
will trot along to our doctors for the maligned vaccine. But that won't stop us
doing it with a heavy heart. And it won't stop us wishing that we could be
treated like adults, and given rather better research, and rather less
scare-mongering.
n.walter@btinternet.com
Also from Independent
http://www.independent.co.uk/story.jsp?story=110964
******************************
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ALL
INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR
GENERAL INFORMATION PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE
KNOWLEDGE OR OPINIONS OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED
AS PROVIDING MEDICAL OR LEGAL ADVICE. THE DECISION WHETHER OR NOT TO
VACCINATE IS AN IMPORTANT AND COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU
ALONE, IN CONSULTATION WITH YOUR HEALTH CARE PROVIDER.