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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Thursday January 17, 2002
Special Edition
INDEX:
* Parents Win Jurisdiction
Ruling In Mercury Vaccine Lawsuits
* Argument For Autism as a Genetic 'Epidemic'
* Live and Learn: As the number of children with autism reaches
critical
levels
* A Pox On Vaccines: 'Informed Refusal'
******************************
Parents Win Jurisdiction Ruling In Mercury
Vaccine Lawsuits
[By William Mccall, Associated Press.]
http://www.boston.com/dailynews/015/economy/Parents_win_jurisdiction_rulin:.
shtml <- - address ends here.
A class-action lawsuit against major drug
companies for alleged links
between autism and vaccines containing mercury should be tried in state
court and not a federal one, a federal judge has decided.
U.S. Magistrate Donald Ashmanskas last week
ordered the case remanded
to Multnomah County Circuit Court in Oregon, said an attorney for families
who allege the vaccines have caused autism in their children.
The drug companies had asked that the case
be tried in federal court.
They have until Jan. 22 to file any objections or seek a review.
The ruling could help the families who
filed the lawsuit, said
Portland attorney Kathleen Dailey.
"It levels the playing field because
it is more affordable to wage
this battle against these megacorporations in state court rather than
federal court," she said.
The case began with George and Tory Mead, a Portland couple
whose
3-year-old son, William, has been diagnosed as autistic. His parents say he
was developing normally until he received a series of vaccines containing
the preservative thimerosal, a form of mercury.
George Mead said a growing body of research
indicates that increases
in the number of vaccines routinely administered to U.S. children beginning
in the early 1990s led to an increase in autism cases and associated
neurological disorders.
The effects of mercury toxicity were not
seen until the number of
vaccinations was increased to combat various diseases such as hepatitis,
Mead said.
The American Academy of Pediatrics joined
the U.S. Public Health
Service in July 1999 to warn that vaccines containing thimerosal should be
discontinued.
The National Academy of Sciences released a
report last October saying
researchers still are unable to determine if there is a link between
thimerosal and disorders in children. But the report backed up the 1999
recommendation to remove vaccines with thimerosal from the nation's medical
stockpile.
The same week the National Academy of
Sciences report was released, a
coalition of law firms across the nation filed claims against the drug
companies.
The defendants in the lawsuits include:
Aventis Pasteur Inc.; Pfizer
Inc., a subsidiary of Warner-Lambert; GlaxoSmithKline; Merck & Co.; Abbott
Laboratories; American Home Products; Baxter International Inc., Eli Lilly
&
Co.; Sigma Chemical Co.; and Aldrich Chemical Co.
Three doctors, including one who treated
Mead's son, also are named as
defendants.
On the Net:
National Academy of Sciences publications
office: http://www.nap.edu
American Academy of Pediatrics:
http://www.aap.org
******************************
Argument For Autism as a Genetic 'Epidemic'
"Have the airplane and the computer changed
the architecture of the
mind? And is that why autism is on the increase?"
[By Simon Baron-Cohen
http://www.edge.org/3rd_culture/bios/baroncohen.html is Professor of
Developmental Psychopathology and Co-Director of the Autism Research Centre
at Cambridge University and author of Autism: The Facts (1993).]
http://www.edge.org/q2002/q_baroncohen.html
People with autism can be affected to varying
degrees, but their
principal mental characteristics are that they have difficulty in fitting in
with other people or figuring out people's feelings and perspectives (a
disability) whilst they have a natural flair for analysing the non-social
world in fine detail, and in understanding non-social systems (a talent). So
whilst they may appear socially odd to their peer-group within their own
culture, their long hours focused on understanding a system like mathematics
or calendars, car engines or music, navigation or computer-programming,
grammar and vocabulary, can lead them to high levels of expertise within
narrow domains of knowledge.
People with autism are usually male, and these
men would traditionally
have not competed well in the competition for mates, as appearing socially
odd might have either put off prospective females from choosing them, or put
off prospective parents-in-law from arranging such a marriage for their
daughters.
And then two massive changes hit the planet: the
airplane and the
computer.
The airplane has allowed unprecedented
opportunities for changing your
culture. And when you go from your native culture into another one, your
social oddness may be far less obvious. "Oh, he behaves like that because
he's English", a Brazilian might say, or vice-versa.
Social oddity can be minimised to some extent by
moving cultures
because we are all experts in knowing the subtle body language and
intonation of our own cultures but might just mistakenly assume that a
foreigner's different body language or intonation is due to their different
culture. We might overlook what to people in their culture would appear odd
and off-putting. So someone with autism might find it far easier to be
accepted, even by the opposite sex, when they are abroad, compared to when
they are in their native country.
The computer has penetrated every work-place. In
just 50 short years,
there is now no office in the developed world where computers are not
essential, and we need those people with the cool, razor-sharp logic to fix
them, reconfigure them, develop them, adapt them, program them. The autistic
mind was sitting around for centuries, even millennia, under-employed,
because how many jobs were there for mathematicians and scientists, who also
needed this style of thinking? Drops in the ocean. And then the market
opened up for computer-scientists - the most in-demand of workers in the
modern age. Tidal waves in the ocean.
Computer-scientists, irrespective of their social
skills, could now
hop on a plane and find a job, get rich, and have something to offer a girl:
social status, a salary, a niche in which they fit, and even be accepted as
normal for a foreigner - for who of us can judge what is normal for a
foreigner? Or even if they just stayed in their own culture, they were now
more valued and accepted than before.
This is not to say that all computer-scientists
lack social skill. Far
from it. We all know computer-scientists who are good socializers. Nor is it
to say that those severely affected by autism could suddenly shift and
become a successful programmer. But those who had a dash of autism could.
No longer the socially isolated, unemployed,
"weird" guy who could
list every prime number up to 10,000 in minutes, but who couldn't have even
a semblance of a conversation with a girl at a party. Now the successful
computer scientist, well-paid, whose talent at "systemising" has
enabled him
to learn a foreign language and be accepted, and even find a date and a
mate.
Autism is genetic: it runs in families. But
whereas in 1970 the rate
of autism was 4 in 10,000 people, today it is 1 in 200 people. The rate has
gone up more than twelve-fold.
Twelve-fold? Is this an epidemic? Some have rashly
thought this might
be because of some pollutant or even vaccine damage, but the evidence for
this is thin. Certainly, the increase in autism is in part because of better
detection and awareness, thanks to the tireless work of autism charities
throughout the world.
But could it also be that this has also been a
result of the most
rapid evolutionary change to the human brain that we have witnessed? A
recent issue of Wired Magazine in December 2001 reported that the rate of
autism was hitting record rates in Silicon Valley, where a new evolutionary
niche was opening up for people to fly in from around the planet, sell their
mathematical and systemising talent, and find reproductive success which
would otherwise have remained beyond reach. Our experimental research is
consistent with this interpretation, and warrants further testing.
If this evolutionary change is real, should we
fear it? On the
contrary, we should welcome and celebrate it. Good socializers have always
found it easy to survive and reproduce, but we need our good systemisers
too, for the benefit of the planet. These are the guys (men and women) who
are going to push science and technology forward, and create our future.
Thank Darwin that life is now a bit easier for them too.
******************************
Simon
Baron-Cohen is Professor of Developmental Psychopathology and
Co-Director of the Autism Research Centre at Cambridge University. He is
also a Fellow of Trinity College, Cambridge.
His research spans the developmental
neuropsychology of autism, early
diagnosis, psychological intervention and neuroimaging in autism. He
previously held a senior academic post at London University (at the
Institute of Psychiatry). He was awarded the British Psychological Society's
Spearman Medal, and the American Psychological Association's McAndless
Award, for outstanding contributions to research.
He is author of numerous articles in scientific
journals on the
subject of autism, including Autism: The Facts,1993 The Maladapted Mind:
Classic Readings in Evolutionary Psychopathology; and Mindblindness : An
Essay on Autism and Theory of Mind (Learning, Development and Conceptual
Change).
******************************
Live and Learn:
As the number of children with autism reaches critical levels,
Charlotte Moore argues that the government is failing them
[In The Guardian, UK.]
Autism is not the rare condition it was once
considered to be. Its
incidence is fast approaching critical levels. Opinions vary, but the
"official" UK estimate cites 91 per 10,000 - nearly 1% of the
population -
as being on the autistic spectrum. This is almost certainly an
underestimate; autism is still more likely to be under- than over-diagnosed.
And a recent survey carried out by the all party parliamentary group on
autism (APPGA) found that 87% of responding local education authorities
perceived an increase in the past five years. The highest reported increase
was 77%. Only six LEAs reported no increase.
Discussion of the reasons for this apparent epidemic has
centred round
the MMR immunisation controversy; press coverage has been energetic. As one
would expect, most parents suspect a "real" cause, such as MMR or
diet,
while most health professionals put it down to a broadening definition of
the autistic spectrum and more efficient diagnosis. Whatever the causes -
and I would guess there are several, some as yet undiscovered - the problem
is not going to go away. Autistic children are woefully under-catered for by
our education system. A survey by the National Autistic Society, which is
marking its 40th anniversary this week, finds that "where autism-specific
support was provided, parents' satisfaction levels were at their highest".
Well, there's a surprise!
A mere 17% of the children covered by the APPGA
survey, however, were
in an autism-specific school. Parents' Autism Campaign for Education (Pace)
estimates that nationwide there are only 4,000 specialist places for the
25,000 who need them. The government backs inclusion in mainstream schools
where possible, but only 5% of mainstream teachers have any autism-specific
training, although 70% will have had to work with a child with autism. The
"training", in any case, may consist of no more than participation in
a
one-day course.
Autistic people are expensive. It is currently
reckoned that the
additional lifetime cost of each autistic individual is £2.9m. Untrained,
autistic people are incapable of looking after themselves. Unsupervised,
many are a danger to themselves and other people.
You can't cure autism, but you can reduce its
ill-effects. Early
intervention is the best way to maximise the child's chances of
semi-independent living - which, of course, is the only way to decrease the
colossal care bill. The government signalled its enthusiasm for early
intervention in a 1997 green paper: "Early intervention helps a
significant
number to overcome their disability sufficiently to attend mainstream
schools... there is a consensus of findings that early intensive
education... can produce significant changes in children with an ASD
[autistic spectrum disorder]." But there is a virtual absence of provision
for the under-fives. The problem is made worse by an idiotic reluctance on
the part of some authorities to produce a diagnosis.
"Some of my colleagues don't want to give a
diagnosis because they're
afraid of upsetting the parents," one paediatrician told me. This is
culpable cowardice. According to the APPGA survey, 40% of families waited
over three years for a diagnosis, while 10% waited more than 10 years. There
is a misguided desire to avoid "labelling". In my experience, it
would be
hard to find a section of the population who care less about being
"labelled" than autistic people, most of whom have no interest in
what other
people think of them.
So diagnoses are pointlessly, even cruelly,
delayed, intervention is
not provided, and those precious early years tick by. A pattern of failure
emerges, where the ASD child, often without a statement of special
educational need due to the absence of a diagnosis, is placed in a
mainstream school. It's not too bad at first, because small children are
very accepting, and low skill levels, whether academic or social, are not so
obvious in a five year old. But around the age of seven or eight, when the
herd instinct really takes a grip, the social isolation of the ASD child is
fully revealed, often with traumatic results for all concerned. It is
decreed that the child be moved, but to where?
LEAs like to fit children into mild, moderate or
severe learning
disability categories, but this is not appropriate for the uneven learning
ability of the autistic child. Autists cover the whole IQ range, from
imbecile to genius; it is far more helpful to consider the condition as a
social, rather than a mental, handicap. I once met an immensely able
autistic woman who had a research post at Cambridge University. Because of
her intellect, she had endured the horrors of being a misfit in mainstream
education; because of her autism, she had been unable to express her
unhappiness. "Whatever you do," she told me, "don't put your
sons in a
normal school."
And it's all very well for the government to radiate
enthusiasm for
its inclusion policy, but mainstream schools are often reluctant to
implement it. There are many examples of excellent practice - all credit to
them - but there are also many schools that do not want to accept ASD
children, who are 20 times more likely to be excluded than their peers. A
parent from a north London borough reports that "although the LEA was
prepared to fund full support for him in mainstream, I phoned around 20
schools and was rejected".
No wonder increasing numbers of parents are
turning to home schooling.
Here, the main difficulty is funding. Parents and LEAs are often in conflict
about methodology; parents passionately advocate a home therapy programme
such as ABA/Lovaas (my own choice), or Options, while the local authority
remains unconvinced. Short-term budgetary considerations prevent LEAs from
investing in educational strategies that would yield long-term benefits. To
achieve their goal, whether for home education or special school placement,
a worryingly high number of families resort to tribunals. Almost half the
LEAs in the APPGA survey had been taken to tribunal in 1999/2000. Pace
reports a 360% rise in the number of tribunals over the four years, and this
figure doesn't include "eleventh-hour" settlements.
Pace has identified a "responsibility
vacuum" between central and
local government. There is no coherent strategy across LEAs; departments of
education, health, and social services fail to pool budgets and data. There
is an urgent need for a strategic planning of provision. We need more
research, more accredited training, more specialist school places -
including residential places, for those children who need a 24-hour
curriculum. We need early intervention, swifter diagnosis, more funding for
home-based programmes. If the government can implement all this, it can
create a containable problem out of what threatens to become a national
emergency.
******************************
A Pox On Vaccines: 'Informed Refusal'
Parents who refuse to have children immunised are regarded as dangerous
cranks - in defiance of the facts
[By Anne Karpf akarpf9@hotmail.com in The
Guardian, UK.]
We call it propaganda when governments peddle
"facts" which are
demonstrably untrue. And yet the claim that without vaccination measles is a
stalking killer is disseminated by both the Department of Health and most
medical journalists, despite strong counter-evidence. In 1976, Professor
Thomas McKeown, investigating trends in mortality, compared declining
death-rates from infectious diseases with medical interventions since the
cause of death was first registered in 1838. He found that immunisation had
no significant effect on the trend of the death-rate from measles, which had
fallen to a low level before mass vaccination was introduced, because of
major improvements in sanitation and nutrition. So too had morbidity, the
incidence of the disease.
Those of us who haven't had our children
vaccinated aren't cranky
obsessives or zealous Jehovah's Witnesses. On the contrary, we're mostly
pretty well-informed, as you have to be if you refuse the orthodoxy of
vaccination. We do so for two main reasons, neither of them specifically to
do with autism, which most people would agree is dreadful but only affects a
small number of children.
The first, and most shocking one, is that
vaccination simply can't
sustain the claims made for it. In the US immunisation rates are as high as
98% is some areas, and yet there are still regular measles epidemics. The
Centres for Disease Control in Atlanta found that 80% of measles cases in
1985 occurred in children who had been vaccinated, while a 1987 outbreak
affected a secondary school more than 99% of whose pupils had had live
measles vaccine. In Italy there were just 10 deaths from measles between
1989-91, even though they had only 40% coverage from the vaccine. In the
following two years coverage from the vaccine grew, as did deaths from
measles (to 28). So much for "herd immunity".
Second, we believe that in the case of infectious
diseases, Pasteur's
germ theory has been oversold. Pasteur, Robert Koch and others focused on
the bacteria that caused infections, which medicine then tried to zap. Most
anti-vaccinators argue that the host, ie the body, is as important as the
infecting germ. Starting from a quite different paradigm, they prefer to
nourish the body's own immune system, which vaccination (they maintain)
impairs.
Opponents of immunisation feel vindicated by
epidemiology, for measles
isn't a disease that strikes randomly unless routed by vaccination. On the
contrary, it turns out to be depressingly class-conscious and poverty-aware.
Those most debilitated by it are the least well fed - there's a tragic
synergy between malnutrition and infectious diseases. According to a 1973
World Health Organisation report, "ordinary measles or diarrhoea -
harmless
and short-lived diseases among well fed children - are usually serious and
often fatal to the chronically malnourished.
"Before vaccines existed, practically every
child in all countries
caught measles, but 300 times more deaths occurred in the poorer countries
than in the richer ones. The reason was not that the virus was more
virulent, nor that there were fewer medical services; but that in poorly
nourished communities the microbes attack a host which, because of chronic
malnutrition, is less able to resist". Given that there's no vaccination
against poverty, governments prefer the quicker fix of vaccination. Vaccine
producers like it too: there's gold in them thar jabs.
This isn't a sphere where conscientious
objections are tolerated,
either among doctors or patients. Each GP gets a "target payment"
(did
someone say "bribe"?) of £2,730 for vaccinating 90% of two-year-olds
on
their list. Some practices are now considering dropping unvaccinated
families from their lists. When my first child was newborn, my GP asked why
I was risking her life by refusing to have her vaccinated. I changed
practices soon after. Journalists, too, are expected to toe the public
health line and are labelled irresponsible (as I will be) if they don't,
even though accusations of "inaccuracy" often mask genuine
disagreements.
Alternative health practitioners argue that
measles and other
infectious illnesses, far from damaging children, actually improve their
overall health. But a child suffering from the disease needs proper,
labour-intensive care. Nursing used to be an essential part of the
job-description of motherhood: our mothers (for it was mostly them) knew how
to nurse an infected child - drawn curtains, cold drinks, and wet flannels.
We now think of nursing almost entirely in professionalised terms, as
something we pay others to do.
Above all nursing is slow, but life is fast. What
child, today, can
afford to miss a week of the national curriculum, and what mother can take a
week off work? I don't usually admit it in public lest a passing doctor
burst a blood-vessel, but I want my children to contract measles. Yet
whenever I hear of someone from whom they could catch it, it's never the
right time - an exam or deadline is always looming.
One consequence of the mass vaccination of
children is to turn measles
into an adult (or adolescent) disease, when it's far more dangerous. And now
the government is considering the introduction of a chickenpox vaccine -
thus does the vaccination cocktail grow. We're familiar with the concept of
informed consent. On vaccination, increasing numbers of people are turning
towards the concept of informed refusal.
[Please note that colloquial British spelling
have been intentionally
left uncorrected; these provincial artifacts are reproduced as found and are
not the consequence of redactive inattention. – Editor.Lenny Schafer of FEAT
Newsletter]
******************************
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