01-11-2005, 08:22 PM
Here are some of the excerpts from the latest email sent out:
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. (Genetic Tests Urged To Cut Out Disability[By Dearbhail McDonald.]http://www.timesonline.co.uk/article/0,,...30,00.html)
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.
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.
Now is it not the same for autistic/aspie parents that do have love in their hearts, make mistakes, we chose not to cure our children or ourselves, yet we are said to do wrong? This is pathetic nonsense. I am proud of who I am, proud of who my oldest son is as well as whatever my youngest son turns out to be NT or on the autism spectrum. I make mistakes everyone does NT or AS, or whatever but by no means am I wrong for it. Tired of being told I am harming my child if I don't do the diets, the interventions, the therapies, Dylan is doing fantastic with my love and teaching him how to use the skills that he has a hard time with and with speech therapy and a bit of advice on motor skills from occupational therapist. He has never received ABA or anything else and he's doing fantastic on his own. He is who he is meant to be as am I as is Brendon and we're all unique and different and that is what matters most.
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. (Genetic Tests Urged To Cut Out Disability[By Dearbhail McDonald.]http://www.timesonline.co.uk/article/0,,...30,00.html)
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.
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.
Now is it not the same for autistic/aspie parents that do have love in their hearts, make mistakes, we chose not to cure our children or ourselves, yet we are said to do wrong? This is pathetic nonsense. I am proud of who I am, proud of who my oldest son is as well as whatever my youngest son turns out to be NT or on the autism spectrum. I make mistakes everyone does NT or AS, or whatever but by no means am I wrong for it. Tired of being told I am harming my child if I don't do the diets, the interventions, the therapies, Dylan is doing fantastic with my love and teaching him how to use the skills that he has a hard time with and with speech therapy and a bit of advice on motor skills from occupational therapist. He has never received ABA or anything else and he's doing fantastic on his own. He is who he is meant to be as am I as is Brendon and we're all unique and different and that is what matters most.
