FEAT DAILY NEWSLETTER
Sacramento, California http://www.feat.org
January 17, 2002
News Morgue Search www.feat.org/search/news.asp
·
Argument For Autism as a Genetic ‘Epidemic’
·
Live and Learn
·
A Pox On Vaccines: ‘Informed Refusal’
“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).
* * *
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.]
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