Genetic Tests Urged To Cut Out Disability

schafer schafer at sprynet.com
Tue Jan 11 14:25:00 EST 2005


SCHAFER AUTISM REPORT                "Healing Autism:
                             No Finer a Cause on the Planet"
________________________________________________________________
Tuesday, January 12, 2005                         Vol. 9  No. 5


   - Special Controversies Edition -


    TREATMENT
   * Genetic Tests Urged To Cut Out Disability

    PUBLIC HEALTH
   * Water Safety Findings Clash: A Scientific Panel’s Acceptable Level
     of Rocket Fuel Is 20 Times What The EPA Urges
   * Save The Fetus In A World Awash In Pollutants, What Exactly Is Our
     Obligation To Protect The Health Of The Unborn?
   * First Person: Toxic Breast Milk?
   * GoozNews Update: Blowing the Whistle

    COMMENTARY
   * Autism Tests Urged To Cut Out Disability: Mock Article

    LETTERS
   * Cure for the Anti-Cure
   * COMMENTARY: Somewhere Over the Spectrum, Part 3


TREATMENT

Genetic Tests Urged To Cut Out Disability

      [By Dearbhail McDonald.]
http://www.timesonline.co.uk/article/0,,2091-1416230,00.html

     A leading obstetrician has called for the introduction of a national
screening programme to test foetuses for Down’s syndrome.
      Stephen Carroll, a consultant at the National Maternity hospital in
Dublin, said a countrywide system would help to increase detection of unborn
babies with the disability. Ireland has one of the highest levels of Down’s
syndrome in Europe.
      A recent survey conducted at the hospital revealed that two-thirds of
older mothers-to-be, considered most at risk, did not want to know if their
child would have the syndrome.
      The women, 75% of whom were over 35 years of age, volunteered for a
nuchal translucency test, a type of scan which gives an early indication of
the likelihood of carrying a Down’s syndrome baby.
      However, once the women were told that they were at risk, two-thirds
declined a further, more invasive test known as amniocentesis. Some were
concerned that the procedure, which involves the removal of tissue from the
foetus, would trigger a miscarriage. Others simply did not want to know or
felt the test was futile because abortion was not available in Ireland.
      “A lot of women leave it to fate and just don’t want to know,” said
Carroll, who led the two-year study at the hospital’s Fetal Assessment Unit.
      “Advances in screening means that we can assess a woman’s risk of
carrying Down’s in the early stages of pregnancy, and that is a great
advantage. However, there are no options for women in Ireland to terminate a
pregnancy where tests reveal a chromosomal abnormality.
      “Down’s syndrome still comes as a shock to many parents and it is
crucial that women who are screened are counselled as to the implications of
such tests and what carrying a Down’s child means.”
      Down’s syndrome is a chromosomal abnormality that affects the physical
and intellectual development of children born with it. An estimated one in
580 babies born in Ireland has the disability, a figure likely to rise as
the average age of first-time mothers climbs over 30. In Britain, where
screening is more commonplace, mothers often opt to terminate their
pregnancy if an abnormality is detected.
      “More women want to know if they are carrying a child with Down’s
syndrome,” said Carroll. “Armed with knowledge they receive from friends,
the internet, even women’s magazines, a number of those women are prepared
to travel to terminate their pregnancy.
      “Advanced prenatal screening is a doubled-edged sword. On the one
hand, it can lead to earlier detection and treatment of chromosomal
abnormalities, but often it can present parents with difficult moral
dilemmas.”
      Carroll nevertheless believes women who will be over 35 on their due
date should be offered prenatal tests to determine whether their foetus has
the disability.
      “I think screening is a brilliant idea,” said Mary Gaw, a Dublin
mother of four who has given birth to two children with Down’s syndrome.
      She was not tested before giving birth to her daughter Tara, 6, who
has the syndrome, and underwent an NT scan and amniocentesis before giving
birth to her son Harrison, 3, who also has the condition.
      “It is such a shock to give birth to a child with a disability. Your
head is all over the place,” said Gaw, whose children have both undergone
open heart surgery. “Being prepared makes all the difference. It is
impossible to be sad once they are born because you love them so much.”
      Some feel the risk of miscarriage, albeit minor, involved in the
second, more detailed test is one not worth taking.
      “Why create an additional risk?” asked May Gannon, a counsellor for
Down Syndrome Ireland. “People assess the risk of miscarriage associated
with invasive tests against the need to know. For many mothers, the risk of
miscarriage is still too much, especially if they are not planning to have
an abortion.”
      The morality of what are termed eugenic abortions, of unborn children
with disabilities, has been the subject of heated debate in Britain. It
became particularly controversial earlier this year after it emerged that up
to 12 foetuses had been aborted late in pregnancy because they had cleft
lips and palates, minor disabilities that can be corrected.
      “Why do we need national screening?” said Gannon. “People with
disabilities have the same right to life as everybody else. We cannot use
advances in screening techniques to get rid of children.”

      See COMMENTARY at the end of this publication.





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* * *

PUBLIC HEALTH

Water Safety Findings Clash:  A Scientific Panel’s Acceptable Level of
Rocket Fuel Is 20 Times What The EPA Urges

      [Environmental toxins such as perchlorate are candidates for being
triggers or causes of autism. –LS. By Chris Bowman.]
http:/www.sacbee.com

      An independent panel of distinguished scientists concluded Monday that
a rocket-fuel chemical pervasive in California’s drinking water supplies is
safe to consume at levels 20 times greater than the dose proposed by the
U.S. Environmental Protection Agency.
      The National Academy of Sciences committee criticized EPA scientists
for relying more on studies of laboratory rats than actual human exposures
in evaluating people’s health risk from exposure to the chemical,
perchlorate.
      The panel’s conclusion will influence the level of protection that EPA
and California regulators ultimately decide upon for millions of people with
some level of the contaminant in their drinking water supplies.
      Perchlorate, an ingredient of solid rocket fuel, explosives and
fireworks, is round in drinking water supplies serving parts of Rancho
Cordova and many other communities across the country.
      The Pentagon, NASA and defense contractors such as Gen Corp’s Aerojet
in Rancho Cordova have weighed heavily into the scientific debate, raising
outcry from some environmentalists. The safety standard will help determine
the level of cleanup required at dozens of military and industrial
installations where the rocket fuel chemical has seeped into the
groundwater.
      In releasing the academy study Monday, Richard Johnson, chairman of
the 15-member scientific committee, acknowledged that far fewer perchlorate
studies have been conducted on humans than on animals. But he said the
scientists found the handful of human studies more reliable.
      “We believe that using human exposure is the optimal way to derive the
reference dose,” Johnson said at Washington, D.C., press conference.
      A “reference dose” is the level of daily, lifetime exposure to a
hazardous substance determined to be safe for even the most sensitive
individuals.
      Scientists with environmental advocacy groups predicted that the EPA
and California regulators will end up setting a drinking water standard with
a lower level of exposure than the amount the academy scientists consider
safe.
      That’s because the contaminant limit must by law protect people who
are exposed to contamination sources other than drinking water or who have
higher than average water consumption or body weight that renders them more
vulnerable, said Gina Solomon, a physician with the environmentalist Natural
Resources Defense Council in San Francisco.
      In the case of perchlorate, scientists say fetuses and infants are at
much higher risk than adults because they consume far more water per pound
and because perchlorate at certain levels can impair their brain
development.
      Millions of people also consume trace levels of perchlorate in milk
and some produce, said the Food and Drug Administration. An FDA survey
released In November found almost all milk and lettuce sampled across the
country contained low levels of the chemical, which mostly likely came from
water used to irrigate dairy pastures and cropland.
      The academy panel determined that perchlorate in drinking water was
safe up to 20 parts per billion, compared with the EPA’s preliminary
recommendation of 1 ppb, issued two years ago. California regulators last
year deemed 6 ppb as a public health goal in ultimately determining a
regulated limit.
      The academy study was done at the request of defense-related agencies
that questioned the science underpinning the EPA’s risk study.
      “The NAS report is the long-waited tool that will help policymakers
set responsible standards, based on best available science, said James M.
Strock, spokesman for a group of perchlorate manufacturers and users called
the Council on Water Quality.
      Members of the academy panel on Monday denied accusations by the
Natural Resources Defense Council that the White House, Pentagon and defense
contractors were able to “unduly influence” the academy. The environmental
group said it obtained in a public records request thousands of documents
that panel members received from industry and the Bush administration.
      E. William Colglazier, the academy’s executive officer, said Monday
that the panel solicited comments from a variety of interest groups.
      “The government had no inf1uence over the conduct ... of this study,”
Colglazier said.
      The academy is a private, non-profit society of scientists and
engineers elected by their peers to advise the federal government.
      ‘The perchlorate contamination, first discovered at Aerojet’s Rancho
Cordova complex in 1985, is especially acute in California because of the
large number of military operations and defense contractors.
      The rocket fuel maker has spent millions of dollars in perchlorate
monitoring and cleanup.
      Some argue that cleanup should leave no trace.
      “The fact they we are debating how much rocket fuel should be in
California’s drinking water is a little bit absurd,” said Sujatha
Jahagirdar, spokeswoman for Environment California.
      “(Perchlorate) is not naturally occurring in California water.
      The aerospace industry put it there, and they should get it out.”
* * *

Save The Fetus In A World Awash In Pollutants, What Exactly Is Our
Obligation To Protect The Health Of The Unborn? 

      [By Karen F. Schmidt for Science & Spirit magazine. Thanks to Steve
Koyasako for forwarding this and the next article]
http://www.science-spirit.org/articles/newsdetail.cfm?item_id=527

      When Kim Hooper gives a public talk about his work at the California
Department of Toxic Substances Control, he flashes a slide of his baby
granddaughter. “We've given her the best genes we can, but what about her
environment?” he asks the audience. “Already she's had an early experience
far different than my own.” After all, Hooper points out, her life in the
womb began with exposure to myriad chemicals that weren't around sixty-five
years ago.
      It's a reality that makes Hooper and many others nervous. Today, about
2,500 different chemicals are used in high volume, but basic information
about their potential effects on human development is still being compiled.
Many toxic villains have been unmasked in the last three decades, including
DDT, PCBs, dioxins, lead, mercury, and more recently, phthalates
(plasticizers) and PBDEs (flame retardants). As researchers use new tools
for measuring trace levels of contaminants in our bodies, the issue of
chemical safety is again in the spotlight. Studies using “biomonitoring”-the
testing of body tissues and fluids-are revealing that we all harbor a
cocktail of chemicals, some of which were banned long ago.
      Although it's difficult to know whether the pollutants in our tissues
are causing harm, we do know where to look for the first signs of trouble.
“Fetuses are the population we think are the most sensitive to chemical
pollutants,” says Hooper. That's because a small disturbance in the highly
choreographed process of development can have profound and long-lasting
effects on a baby, showing up immediately as birth defects or later as
subtle dysfunctions of the nervous, immune, and reproductive systems.
Scientists believe that environmental factors play a role in at least three
percent and as much as twenty-five percent of all developmental defects in
children, according to a National Academy of Sciences report published in
2000.
      Although the placenta was once thought to protect the fetus,
researchers now know that many harmful substances-drugs, alcohol, toxic
byproducts from cigarette smoke-pass through. Recent evidence suggests the
chemicals a pregnant woman is exposed to in her environment can and do reach
her fetus, Hooper says. Even chemicals encountered years ago can come back
to haunt; for instance, DDT and PCBs stored in fat tissues slowly trickle
into the bloodstream. But there are also plenty of new contaminants to deal
with as women of childbearing age ingest mercury in their tuna fish
sandwiches, breathe solvents wafting out of cosmetics, and absorb particles
coated with flame retardants while sitting on treated couch cushions. The
big question is: How much is reaching their babies? As part of a study
investigating fetal exposures to flame retardants, Jane Williams, director
of California Communities Against Toxics, is recruiting 120 new mothers to
give breast milk samples, which she sends to Hooper's lab group in Berkeley
for analysis for PBDEs. The chemicals- which have been added to everything
from electronics to drapery to vehicle interiors- have recently turned up in
house dust, river sediment, foods from the grocery store, and wildlife, as
well as people. Laboratory studies of mice found that low doses of PBDEs
caused offspring to suffer permanent defects in their ability to learn and
remember, and rats showed delayed sexual development. Since a fetus's
exposure is generally the same as the mother's, Williams says the early
breast milk samples will reveal the dose of PBDEs these California babies
got in the womb.  
+ Full story here:
http://www.science-spirit.org/articles/newsdetail.cfm?item_id=527
* * *

First Person: Toxic Breast Milk?

      [By Florence Williams for New York Times Magazine.]
http://www.nytimes.com/2005/01/09/magazine/09TOXIC.html 

      If human breast milk came stamped with an ingredients label, it might
read something like this: 4 percent fat, vitamins A, C, E and K, lactose,
essential minerals, growth hormones, proteins, enzymes and antibodies. In a
healthy woman, it contains 100 percent of virtually everything a baby needs
to survive, plus a solid hedge of extras to help ward off a lifetime of
diseases like diabetes and cancer. Breast milk helps disarm salmonella and
E. coli. Its unique recipe of fatty acids boosts brain growth and results in
babies with higher I.Q.'s than their formula-slurping counterparts. Nursing
babies suffer from fewer infections, hospitalizations and cases of sudden
infant death syndrome. For the mother, too, breast-feeding and its delicate
plumbing of hormones afford protection against breast and ovarian cancers
and stress. Despite exhaustion, the in-laws and dirty laundry, every time we
nurse our babies, the love hormone oxytocin courses out of our pituitaries
like a warm bath. Human milk is like ice cream, Valium and Ecstasy all
wrapped up in two pretty packages.
      But read down the label, and the fine print, at least for some women,
sounds considerably less appetizing: DDT (the banned but stubbornly
persistent pesticide famous for nearly wiping out the bald eagle), PCB's,
dioxin, trichloroethylene, perchlorate, mercury, lead, benzene, arsenic.
When we nurse our babies, we feed them not only the fats, sugars and
proteins that fire their immune systems, metabolisms and cerebral synapses.
We also feed them, albeit in minuscule amounts, paint thinners, dry-cleaning
fluids, wood preservatives, toilet deodorizers, cosmetic additives, gasoline
byproducts, rocket fuel, termite poisons, fungicides and flame retardants.
      If, as Cicero said, your face tells the story of your mind, your
breast milk tells the decades-old story of your diet, your neighborhood and,
increasingly, your household decor. Your old shag-carpet padding? It's
there. That cool blue paint in your pantry? There. The chemical cloud your
landlord used to kill cockroaches? There. Ditto, the mercury in last week's
sushi, the benzene from your gas station, the preservative parabens from
your face cream, the chromium from your neighborhood smokestack. One
property of breast milk is that its high-fat and *protein content attracts
heavy metals and other contaminants. Most of these chemicals are found in
microscopic amounts, but if human milk were sold at the local Piggly Wiggly,
some stock would exceed federal food-safety levels for DDT residues and
PCB's.
      Some of the chemicals I'm mainlining to my 1-year-old daughter will
stay in her body long enough for her to pass them on to her own offspring.
PCB's, for example, can remain in human tissue for decades. On a body-weight
basis, the dietary doses my baby gets are much higher than the doses I get.
This is not only because she is smaller, but also because her food -- my
milk -- contains more concentrated contaminants than my food. It's the law
of the food chain, and it's called biomagnification.
      To refresh that lesson from seventh grade, here's how it works:
Animals at the top of the food chain receive the concentrated energy and
persistent chemicals of all the biota underneath them. Each member up the
food chain takes in exponentially more fat-loving toxins than its
counterpart below. This is why a slab of shark contains more mercury than
its weight in plankton. Ocean food chains are longer than terrestrial ones,
so people who eat many marine carnivores carry higher body concentrations of
some chemicals than the vegan at your local salad bar. When it comes to
these fat-soluble toxins, the Inuit are among the most contaminated
populations on earth, even though they live in the remote Arctic. But don't
picture Eskimo Woman in sealskin on the top of the food chain. Picture her
suckling baby.
      For a mother and child, nursing is perhaps the most intimate of acts.
Evolutionary biologists call it matrotropy: eating one's mother. My daughter
is not only physically attached to me; she is taking from me all that I can
give her. Each time I lift my shirt, she pants and flaps her arms and legs
as if it were Christmas. Then she settles in, both of us wholly reassured
that this is the best, safest and most satisfying food she could eat. I
nurse because, like many women, this is what I've been told by contemporary
pregnancy books and my pediatrician. I want to give her the best possible
start in an uncertain world.
+ Full story here:
http://www.nytimes.com/2005/01/09/magazine/09TOXIC.html 
* * *

GoozNews Update: Blowing the Whistle
      [Merrill Goozner, is a writer on integrity in science and works for
Center for Science in the Public interest.]
http://www.gooznews.com/archives/000103.html

      Two recent government whistleblower cases reveal the extent to which
we now depend on individual bravery to protect the public’s health and
safety. Unfortunately, they also reveal how vulnerable public employees
become when they go public about government’s failure to do its job. Indeed,
the legal landscape has become so tilted against public employees that it’s
a miracle anyone blows the whistle at all.
      Last month, the National Institutes of Health tried to fire AIDS
research coordinator Jonathan Fishbein after he revealed gross misconduct in
an African clinical trial of nevirapine, which is manufactured by
Boehringer-Ingelheim. Johns Hopkins researchers claimed the drug was
effective in preventing mother-child transmission of the HIV-AIDS virus and,
based on that evidence, NIH officials advised President Bush to include it
in his $15 billion AIDS initiative.
      Fishbein alleged that senior officials at NIH conspired to alter the
conclusions of his internal audit of the trial, which turned up thousands of
instances where researchers failed to report adverse events including some
deaths. Their goal in suppressing his findings, he said, was to spare the
reputations of the researchers, Johns Hopkins and NIH, which funded the
work. The Food and Drug Administration backed the essence of his charges
when it rejected Boehringer-Ingelheim’s petition for U.S. approval of the
drug for preventing mother-child transmission, which had rested largely on
the African trial.
      The second case involved David Graham, the FDA safety official who
blew the whistle on Vioxx. Merck pulled the painkiller from the market after
a cancer study showed it raised the risk of heart attacks. But as early as
2001, researchers had pointed out data suggesting the deadly side effects of
the drug. Graham, working in the understaffed and overlooked safety office,
spent three years pulling hundreds of thousands of records from a west coast
health maintenance organization to prove the connection. 
      When he brought his results to the attention of senior FDA officials,
they tried to prevent him from publishing. When Congress held hearings to
determine why the FDA didn’t act sooner, agency officials tried to stop him
from testifying. When he sought legal help, those same officials tried to
scare the lawyers off the case by calling his professional competence into
question.
      There’s a law that is supposed to protect government workers when
their agencies retaliate against them simply for doing their jobs. It’s
called the Whistleblower Protection Act, passed unanimously by Congress in
1989 and signed into law by the first President Bush (after President Reagan
had pocket vetoed a similar law a year earlier). The Sarbanes-Oxley Act of
2002 extended that right to corporate employees who blow the whistle on
their employers’ accounting shenanigans.
      But according to Tom Devine, an attorney with the
http://www.whistleblower.org/ legal rulings over the past decade have turned
the public employee law into its opposite: a whistleblower dismissal act.
The Justice Department, which defends the government agencies, has won all
but one of the 95 cases that have reached the U.S. Court of Appeals, which
is the final arbiter of whistleblower cases. One of the judges who sits on
that panel, Robert Mayer, was dismissed from his post in the Reagan White
House for tutoring then Interior Secretary James Watt in how to dismiss
whistle-blowing employees.
      The track record at the Merit Systems Protection Board, where public
employees must first turn, isn’t much better. Last month, the board
(formerly known as the Civil Service Commission) ruled that Fishbein had no
whistleblower protection act rights because he was a special hire under a
law that gives agencies like NIH salary flexibility to recruit
highly-skilled employees. The 1,400 physician/researchers at NIH hired under
that provision in essence, anyone in a position senior enough to know what
is going on now have no protection if they go public with negative
information about the agency.
      “Whistle blowers don’t get a day in real court, they get a day before
a board of hearing officer who don’t have any judicial independence,” said
Devine. “Only one whistleblower has saved his job under the law a
maintenance worker who blew the whistle on inadequate lighting at his
workplace. Anybody whose dissent created a headline was dead meat. That’s
why we see the law as a trap rather than a shield.”
      Even many Republicans in Congress realize something is out of whack.
Sen. Charles Grassley (R-Iowa) has provided bipartisan leadership toward
passing a whistleblower reform bill, which would create a real judicial
review for whistle blowers. He also warned the FDA not to retaliate against
Graham. But the Republican leadership blocked votes on the bill in the House
and Senate last year after pressure from John Ashcroft’s Justice Department.
Alberto Gonzalez is unlikely to champion the issue in the new Congress.
      Still, about 50 government workers who are potential whistleblowers
contact organizations like the Government Accountability Project every
month. About a third, in Devine’s view, are legitimate cases where the
government actions, if left unexposed, would leave some segment of the
public unprotected from unsafe drugs, dangerous food or defrauded by
military contractors. What does he tell them? For most, “we tell them that
their legal rights are so weak that they might prefer to just tell their
supervisor and try to maintain a supportive work environment.”
      Dr. Fishbein has chosen to work outside the system. He recently set up
a http://www.honestdoctor.org/ website called HonestDoctor.org for
NIH-funded researchers who want to report evidence of misconduct in clinical
trials.
* * *

COMMENTARY
Lenny Schafer

Autism Tests Urged To Cut Out Disability: Mock Article

            This is a mock story we might read five years from
      now.  The original, real version of this article is at 
      the beginning of this newsletter and is about pre-natal 
      screening for Down Syndrome. 
            A common technique used in sensitivity training 
      to raise awareness about ethnic or sexual prejudice is 
      an empathy building device called role-reversal. Replace 
      the group targeted for prejudice with one’s own to see 
      how one likes being treated this way, if one is not 
      already a member of that group.
            Here we engage a similar technique of role switching
      for a different purpose.  We’ve replaced every reference to
      Down Syndrome with autism or Asperger Syndrome to 
      produce an unusual read that may help bring the subject
      a little closer to home.  See how it feels on you.


     A leading obstetrician has called for the introduction of a national
screening programme to test foetuses for Autism.
      Stephen Carroll, a consultant at the National Maternity hospital in
Dublin, said a countrywide system would help to increase detection of unborn
babies with the disability. Ireland has one of the highest levels of Autism
in Europe.
      A recent survey conducted at the hospital revealed that two-thirds of
older mothers-to-be, considered most at risk, did not want to know if their
child would have the syndrome.
      However, once the women were told that they were at risk, two-thirds
declined a further, more invasive test known as amniocentesis. Some were
concerned that the procedure, which involves the removal of tissue from the
foetus, would trigger a miscarriage. Others simply did not want to know or
felt the test was futile because abortion was not available in Ireland.
      “A lot of women leave it to fate and just don’t want to know,” said
Carroll, who led the two-year study at the hospital’s Fetal Assessment Unit.
      “Advances in screening means that we can assess a woman’s risk of
carrying Autism in the early stages of pregnancy, and that is a great
advantage. However, there are no options for women in Ireland to terminate a
pregnancy where tests reveal a chromosomal abnormality.
      “Autism still comes as a shock to many parents and it is crucial that
women who are screened are counselled as to the implications of such tests
and what carrying an Autism child means.”
      Autism affects the physical and intellectual development of children
born with it. An estimated one in 580 babies born in Ireland has the
disability, a figure likely to rise. 
      In Britain, where screening is more commonplace, mothers often opt to
terminate their pregnancy if an abnormality is detected.
      “Advanced prenatal screening is a doubled-edged sword. On the one
hand, it can lead to earlier detection and treatment of chromosomal
abnormalities, but often it can present parents with difficult moral
dilemmas.”
      “I think screening is a brilliant idea,” said Mary Gaw, a Dublin
mother of four who has given birth to two children with Autism.
      She was not tested before giving birth to her daughter Tara, 6, who
has the syndrome, and underwent an NT scan and amniocentesis before giving
birth to her son Harrison, 3, who also has the condition.
      “It is such a shock to give birth to a child with a disability. Your
head is all over the place,” said Gaw, whose children have both undergone
open heart surgery. “Being prepared makes all the difference. It is
impossible to be sad once they are born because you love them so much.”
      Some feel the risk of miscarriage, albeit minor, involved in the
second, more detailed test is one not worth taking.
      “Why create an additional risk?” asked May Gannon, a counsellor for
Autism Ireland. “People assess the risk of miscarriage associated with
invasive tests against the need to know. For many mothers, the risk of
miscarriage is still too much, especially if they are not planning to have
an abortion.”
      The morality of what are termed eugenic abortions, of unborn children
with disabilities, has been the subject of heated debate in Britain. It
became particularly controversial earlier this year after it emerged that up
to 12 foetuses had been aborted late in pregnancy because they had Asperger
Syndrome, a minor disability that can be corrected.
      “Why do we need national screening?” said Gannon. “People with
disabilities have the same right to life as everybody else. We cannot use
advances in screening techniques to get rid of children.” 

COMMENTARY Continues

      Not everyone will be uncomfortable with this future “cure” for autism,
to be sure. But an estimated 70 to 90% of pregnancies that test positive for
Down Syndrome are terminated early.  
      Almost all government research money spent on autism is in genetic
research, as well most the funds raised by private parent-groups like the
National Alliance for Autism Research, and to a lesser extent, Cure Autism
Now. 
      Nowhere on any government website, or on any parent fundraising
organization website will one find any reference to eugenic screening as an
application for the genetic research they fund.  
      However, recent history has shown that this was exactly how this type
of research was initially applied in the case of Down Syndrome.  As soon as
the genetic markers for Down Syndrome were identified, public funding for
Down Syndrome research dried up.  Right or wrong, abortion is the first, and
still the last “cure” for that disorder. 
      A significant difference between Down Syndrome then and autism
research now, is that a small minority of parent-based autism research
funding groups believe there are environmental factors, in addition to
genetic factors, at the cause of autism and are struggling to raise public
awareness and funding in this area accordingly. The larger Cure Autism Now
organization has recently increased its attention in this direction, as
well.
      Only recently have a few scientists, in and outside of the government
have come around to admitting to there being environmental factors in
autism, in the face of an autism epidemic.  Epidemics cannot be caused by
any genetic factors.  This perhaps is the reason for most supporters of
genetic research denying an autism epidemic. It draws attention and
therefore funding away from genetic research and into research into
environmental triggers and sources, including possible iatrogenic toxins
found in vaccines.  
      And there may be toxic sources in other Food and Drug Agency approved
medications as well, or even as the result of Environmental Protection
Agency standards and regulations that conflict with agencies that are more
influenced politically by pharmaceutical and industrial manufacturing
interests respectively [see environmental articles above under PUBLIC
HEALTH].
      Environmental or clinical autism research also threatens public health
agencies in addition to their corporate counterparts, who may be at the
source of environmental assaults.
      In a related matter also making the news, the eugenic “cure” for
autism is the bone that is stuck in the craw* of the “Don’t—Cure-Our-Autism
advocates who have currently caught the attention of some media here and in
the UK. If this turns out to be the only “cure” for autism, then they have a
point.  But, to use a close-cutting cliché, let’s not toss the baby out with
the bathwater**.  Abortion needn’t be the sole cure for autism.  Some
families who already have children with autism, as well as those who have a
problem with abortion in general are counting on it and are raising money to
make it so.


 *A metaphor expression for having an all-consuming problem.
**A metaphor expression meaning not to rid of the good when getting rid of
the bad.




                -- > THE SCHAFER AUTISM REPORT IS < --

                0  Canada's most read autism publication
                0  United Kingdom's most read autism publication
                0  The United States' most read autism publication.*

                   A Calendar of Events makes sense.
                      ** NEXT UPDATE FEB 1 **
                   DEADLINE FOR SUBMISSIONS JAN 25
                   http://www.sarnet.org/events


           _______________________________________________________
           * Whew! That's a pretty tall claim. Here are more details:
             ~200 editions, times 12 pages each (not 8 pages as 
             previously Stated), times ~20,000 circulation
             comes to 48 million electronic pages per year.
     


* * *

LETTERS

Cure for the Anti-Cure

      Thank you for publishing your note about the scourge of autism
dialogue these days -- the autism "imposters" who trivialize the
catastrophic nature of what is "real" autism by claiming that people with
fairly normal communication skills but nevertheless afflicted with moderate
sensory/social problems are also autistic.
      The language of autism is severely impoverished. "High functioning
autism" is indeed a contradiction. We need a better way to identify those
with mild impairments and differentiate them with the profound classic
disorder.  Our autism professionals have fallen down on the job.
      -Jill Escher, San Jose, CA, mother of nonverbal 5 year-old autistic
son


      I have an 8-year old with classic autism and due to all of the
attention given to people with Aspergers and those with special talents,
many have a dangerously skewed perception of just how disabling autism can
be.  We need to get the information out to the media that there are
countless hundreds of thousands of people dealing with the more serious
effects of autism and our story needs to be told also.
      - Amy Butler, Grass Valley,  CA


      I have been thinking about the push by "autistics" to not be called
disabled. I agree with the letter that says that for some "autistics" it
truly is just a different way of thinking (when they finally escape the
torture of grammar school). For those with behaviors that prevent them from
living with their families, or which make the lives of their families
hellacious, autism certainly must be called a disability, even by the most
insensitive person.  For some children, the autism becomes manageable as
they mature, and ceases to be significantly disabling (in terms of survival,
and since some don't want an active social life, it is a non-issue to them).
I also think that it is likely that some people "get" autism, while others
inherit it, and still others inherit a predisposition for autistic symptoms
which can be improved with treatment.  
      The problem with the idea of "curing" autism is that it isn't
realistic, and it feels insulting.  I think that, like diabetes, Autism is
TREATED via ABA and Relationship Development Intervention, and speech
therapy, and all the numerous therapies that we parents try in order to
improve the lives of our children, and consequently, our own lives.  Our
argument to those who object to the word "cure", is that we want to
ameliorate the devastating effects that having an autistic child has on the
family, and we want the security of knowing that our children will be safe
after we die. -- Just like parents of "neuro typical” children.
      - Debra Ditkowky


RESPONSE TO LETTERS
Somewhere over the Spectrum, Part 3.
Lenny Schafer

      The “Don’t-Cure-Our-Autism” advocates argue that if a child is having
"hellacious" behavior, it is only because parents and the rest of the world
have failed correctly to respond to the child's autism.  The child would not
have to resort to such extreme communication, which we incorrectly perceive
as aggression, if we were doing our jobs right to meet their needs.  I would
concede that this has much truth. Here is their argument, as I understand
it.
      If their parents had done a better job, their thinking goes, their
lives and their autism would not been so difficult and painful.  The
"rational" conclusion here is that parents failed because they could not
accept their child as autistic flawed, "damaged goods", and therefore cared
not sufficiently enough to make the required effort it would take to have
done it right. If parents properly cared and made the required effort, it
would have made their own lives so much less difficult and painful.  
      Also, they believe that parents who would call for a cure of something
that is so much a part of who they are, further reinforces this conclusion.
To want to eliminate autism, rather than correctly accommodate it, is to say
we want to take the expediency of eliminating them. And viola, problem
cured, problem solved.   
      Are they wrong, silly or paranoid to think such a horrible thing?  In
a large part no!  There is ample history and ample examples of people taking
such drastic short cuts [see above articles on the use of screen to
eliminate disabilities] to rid themselves of the disabled.  
      One very painful and pointed example in support of this thinking is
how we, parents and society, "cures" those with down syndrome.  To say it
bluntly, the current cure is to eliminate them while still in the womb.  If
done, pre-birth testing can identify those fetuses/unborn children with the
flaw because we know the genetic markers for that disorder.  
      But not all parents think in eugenic terms.
      The piece that the autistics don't "get” is that while parents could
have done a better job with the autism, virtually no parents have the
intense training needed to deal ideally with autism, and such training is
difficult to get or to afford, even if one were able to determine what that
training is. Indeed, the anti-cure advocates have no guidelines for what is
appropriate parenting and what is not. Also, they are unable to produce
actual examples of parents who are both doing it right and who are doing it
wrong.  Additionally, and most tellingly, they are unable to produce anyone
who is willing to publicly claim victimhood to such alleged oppressive
parenting and who can provide details of their suffering. There is no there
there.
      Besides, not every parent can become a Mother Teresa for their child’s
autism and it is silly, and counterproductive, to blame them for not being
so.  Parents do not need contrived moral burdens on top of the real problems
they already face.  It just makes it that much more difficult to provide the
care their children need.  This is why their efforts must be opposed. Their
partial understanding of autism and the resulting contorted advocacy puts
them in the way.
      One favorite slogan of the anti-cure crowd is that autism is not a
disease.  Let’s get clear on this.  Autism IS a disease, and not just some
annoying pimple on some malcontent’s butt.  Disease means want of ease, want
of health in body and mind.  It is caring parents who want this for any
child they have, diseased or not.  The kind of cure caring parents want is a
cure that frees their children from the real, suffering disabilities of
autism, so that their children can have what it takes to discover and obtain
their own happiness dictated by their own individuality. To claim that
parents only want to force their children into something they are not for
purely selfish reasons is little more than rank misanthropy. It is just not
true.
      Is it the anti-cure proponents who are the selfish evildoers for their
harmful advocacy?  I believe not.  I believe, as do others, that it is their
autistic-like deficits, the lack of the ability to empathize, that prevents
them from seeing what’s truly in the hearts of most cure and
treatment-loving parents.  With love in your heart, you can make mistakes,
but you can do little wrong.


COPYRIGHT NOTICE: The above items are copyright protected. They are for our
readers' personal education or research purposes only and provided at their
request.  Articles may not be further reprinted or used commercially without
consent from the copyright holders. To find the copyright holders, follow
the referenced website link provided at the beginning of each item.
_________________________________________________________________
Lenny Schafer, Editor mailto:edit at doitnow.com Edward Decelie  Debbie
Hosseini  Richard Miles  Ron Sleith  Kay Stammers



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