Re: Long list of Letters to Newsweek

[Guest guest]

I will be writing, but wanted to encourage everyone to write.

> LETTERS

>

> Mewsweek Coverage of Autism Inspires Strong Letters

>

> Dear Newsweek,

> Those of us who have to live in the world of autism are normally

> pleased to see anything that raises awareness of autism, even the typically

> poor articles that tend to appear in the popular press. But your recent

> article " Boys, Girls and Autism " is so misleading and damaging to the

> innocent victims of this disorder and their families that you should print a

> retraction and a sincere apology. Either your writers are seriously

> misinformed, or it was your intention to portray autism inaccurately as a

> something cute, geeky and lovable, something it is not. In the U.S. today

> there are millions of adults taking care of hundreds of thousands of

> severely disabled autistic children. Most of them are too busy coping with

> the daily life of autism to be able to educate the rest of the populace

> about the devastating nature of autism and the desperate need for meaningful

> research, while the public, the politicians, and the popular media remain

> ignorant of the reality. Whitewash stories such as your article only set

> back the nearly hopeless conditions that still trap so many. Worse, you

> engaged the help of numerous parents of autistic children, and they believed

> you planned to write a meaningful article that might raise awareness and

> shed some light - and then you published this.

> You confuse mild disorders on the autism spectrum, such as Asperger's

> syndrome, with actual autism, which is quite different and much more severe.

> If the intent was to write about Asperger's being widespread and perhaps

> something that people can live with, you should have made that clear,

> without referring to it repeatedly as " autism " . However, what you actually

> wrote includes: " [Autism] is a mental style that people can learn to

> accommodate. Sometimes it's even a gift. " While someone trying to sell a

> book might argue that this applies to Asperger's, it does not apply to

> autism. Parents love their autistic children; they do not love the disease.

> Most parents of autistic children aspire for their children to

> function as well as Rain Man - he could talk, he could understand, he could

> eat, he could sleep, he didn't scream constantly, he could go to the

> bathroom and didn't need diapers. Without a lot of help or luck, many of

> these aspirations are apparently in vain. Your report only lessens the

> likelihood that they will get the help they need, and it lessens the

> likelihood of much needed prevention and research.

> You give glowing references to a theory by a psychologist in Cambridge

> about a male type of intelligence (systemizing as opposed to empathizing).

> Are you claiming that autistic girls are excessively male? If so you are

> sorely mistaken, and you insult the helpless little victims of this terrible

> epidemic.

> The references in the article don't even mention Bernard Rimland, the

> Autism Research Institute, nor any of the organizations that are actually

> doing something about the causes, prevention and cures of autism.

> The annual cost of autism to the U.S. is currently estimated by the

> Autism Society of America at around $100 billion dollars, with the annual

> cost in 10 years projected to be between $200B and $400B. This is not

> something we can just learn to love.

> You mix up accurate statements such as " Classic autism is a

> devastating neurological disorder " and " Many sufferers are mentally retarded

> and require lifelong institutional care " with misleading and incorrect

> statements such as " it has a strong genetic component " , and " [it] is

> marked by rapid brain growth during early childhood. " The epidemic of autism

> is well confirmed by numerous mainstream studies, including publications by

> the U.S. federal government and the governments of various states and other

> countries. There are no genetic epidemics. The genetic component of autism

> was advocated originally in the 1960s by Dr. Bernard Rimland, the founder of

> both the Autism Society of America and the Autism Research Institute, yet

> then as now genetics was not plausible as the primary cause. You give no

> support to your bold statement about " rapid brain growth " and in any case

> this claim, which we know has tenuous evidence from one very small study,

> does not apply to autistic people in general.

> Autism - more properly, autistic disorder - is in fact an extremely

> debilitating disorder. It is marked precisely by the symptoms that make up

> its formal diagnostic criteria, all of which are psychological observations.

> Despite the general lack of funding for truly useful research on autism, the

> studies that have been done clearly associate autism with a number of

> serious medical problems - they are far too numerous to include in this

> letter. Among these are:

> Harvard University and Mass General Hospital's current work on medical

> aspects of autism has already found that more than half of the more than 500

> autistic children they have studied had treatable gastrointestinal problems

> that ranged from moderate to severe including esophagitis, gastritis and

> enterocolitis along with the presence of lymphoid nodular hyperplasia.

> Harvard researcher Dr. Tim Buie stated in a recent report " These children

> are ill, in distress and pain, and not just mentally, neurologically

> dysfunctional, " he said. " It goes on to say " In a significant conclusion,

> Dr. Buie believes that many of the symptoms of autism such as self abusive

> behavior including self-mutilation, head-banging, unexplained outbursts,

> atypical sleep patterns, disrupted sleep or night awakenings, are actually

> symptoms of pain that a child is not able to communicate. "

> Multiple studies have shown that a majority of autistic children have

> serious autoimmunity problems, and they have persistent measles virus in

> their GI tracts and spinal fluid, while normal controls do not.

> Multiple studies, including one performed by the CDC which they

> attempted to keep secret, have shown a strong association between autism and

> mercury (thimerosal) in vaccines. A recently published study showed that

> autistic children do not excrete mercury nearly as well as normal controls,

> apparently retaining mercury in their internal organs. This factor is one

> that may indeed be related to genetics and maleness, for reasons that have

> been studied and published but rarely mentioned in the popular press.

> Imagine if Newsweek had written that heart disease has a strong

> genetic component, it has nothing to do with bad diet and environmental

> poisoning, it is just a strong expression of maleness, that persons with it

> could function just fine under some circumstances, and it is just a

> lifestyle (deathstyle?) that you can learn to love. How would that sit with

> the millions of heart disease sufferers and their survivors?

> There are powerful vested interests who dearly want to see the autism

> epidemic be forgotten. Your article is so misleading and damaging that

> millions of outraged parents and caretakers can palpably feel the insidious

> hand of the PR spin machine once again attempting to suffocate the truth.

> - MacInnis Los Altos, California

> * *

>

> Dear Mr. Cowley:

> I cannot describe the gut-wrenching frustration that I felt when I

> finally sat down and read the much anticipated Newsweek autism issue on line

> tonight. I don't believe that I have ever read a more offensive statement

> to parents of regressive autistic spectrum children, as well as myself, as

> the following line of unadulterated nonsense that follows:

> " If Baron-Cohen is right, autism is not just a disease in need of a

> cure. It’s a mental style that people can learn to accommodate. Sometimes

> it’s even a gift. "

> A gift? Surely this was a sick joke or a typographical error, I

> thought.

> While I do feel that my 9 year-old autistic twins, Ben and Joe are

> gifts from God; there autism was assuredly not. The chronic " gut " issues,

> immune abnormalities, seizures, rashes, self-injurious behaviors and

> inability to communicate (or even speak a single word in 9 years of life in

> Ben's case) is surely not a " mental style " that my sons chose. It is indeed

> a disease very much in need of a cure.

> Years ago, Bruno Bettleheim blamed mothers for autism; it certainly

> appears that Mr. Baron-Cohen now blames the children, and Newsweek is

> promoting this unfounded view. That is a shame.

> -Jeff Sell, Autism Society of America - 1st Vice Chair

> Chairman - ASA Government Relations Committee

> * *

>

> Many of those in the past and today in the world of psychiatry and

> their camp followers in the world of psychology have and continue to be the

> number one enemy of people and their families with autism. It wasn't that

> long ago these psycho-babble folks brought us " Refrigerator mothers are at

> fault " , then " autism is a rare genetic disease " , and even today many in that

> camp continue to deny the real existence of the autism epidemic. Haven't

> they done enough damage already? They have failed us in the past and

> continue to fail us today. They need to go. Our kids do not choose this

> condition. It's not a psychiatric disease. It is in a growing number of

> cases a post birth induced condition, not too much maleness!! Giving any

> credibility to the work of modern day Bettleheims is just as bad as if we

> stood by and allowed Bettleheim and his followers to go on unchallenged. It

> simply is not acceptable.

> We need to quickly remove autism from the ugly grasp of the shrinks

> and psychologists today who are truly getting in the way of progress in

> finding the real causes of autism, developing truly effective treatments,

> and yes, a cure; and, place the responsibility with finding the real

> biomedical causes of this disease with real researchers and medical

> professionals, and send these outdated and misguided people into the sunset

> for from blaming mothers, and coming up with stupid theories like " mind

> blindness " and " extreme maleness " . This crack pot thinking will do nothing

> to find the real causes of autism, nor will it bring us real treatments and

> a cure for this devastating disease.

> - Rick Rollens, Autism Advocate

> * *

>

> If Simon Baron-Cohen is on your side of the pond kindly keep him

> there! When I am speaking to autism support groups here in the UK I

> frequently quote this individual as follows:

> 'Professor Simon Baron-Cohen, co-director of the Autism Research

> Centre at Cambridge University, believes that the rise in autism is at least

> partly due to the broadening of the category. " Its a combination of greater

> awareness and changing criteria, " he says. " There's not necessarily some

> epidemic happening, and no new cause. " " There is also no cure--and no

> prospect of one for many lifetimes, if ever " .'

> If that is the philosophy of the people in charge of autism research

> (the ones who access most of the funding) is it any wonder there has been no

> real progress in sixty years! God help our kids!

> Bill Welsh

> Scotland

> * *

>

> I am very disturbed when people feel so much hatred for an individual

> because they disagree with him. As the mother of a 20-year old high

> functioning man with autism, I know that Baron Cohen and many advocates for

> adults with Aspergers and HFA are trying to help these people feel like they

> belong in society, and have a place in the world. My son has already told me

> he doesn't like it when everyone thinks he needs to be fixed, and he wants

> to be accepted for who he is.

> Simon Baron Cohen is being lambasted for saying that autism is part of

> the human condition, one extreme of something that is part of all of us.

> Maybe the way he says it is offensive, or the notion is too far from reality

> for people who have children with regressive autism. But this other reality

> does exist for my family and there are some valid points.

> - Iland

>

> -------------------------------------------------

>

> To write your own letter of complaint or praise to

> Newsweek, email to Letters@...

>

> To write to Simon Baron-Cohen: sb205@...

>

> Please carefully consider the tone of your letters,

> as you would the content.

>

> AND BE SURE TO SEND US A COPY! edit@...

>

> * *

>

[Guest guest]

I will be writing, but wanted to encourage everyone to write.

> LETTERS

>

> Mewsweek Coverage of Autism Inspires Strong Letters

>

> Dear Newsweek,

> Those of us who have to live in the world of autism are normally

> pleased to see anything that raises awareness of autism, even the typically

> poor articles that tend to appear in the popular press. But your recent

> article " Boys, Girls and Autism " is so misleading and damaging to the

> innocent victims of this disorder and their families that you should print a

> retraction and a sincere apology. Either your writers are seriously

> misinformed, or it was your intention to portray autism inaccurately as a

> something cute, geeky and lovable, something it is not. In the U.S. today

> there are millions of adults taking care of hundreds of thousands of

> severely disabled autistic children. Most of them are too busy coping with

> the daily life of autism to be able to educate the rest of the populace

> about the devastating nature of autism and the desperate need for meaningful

> research, while the public, the politicians, and the popular media remain

> ignorant of the reality. Whitewash stories such as your article only set

> back the nearly hopeless conditions that still trap so many. Worse, you

> engaged the help of numerous parents of autistic children, and they believed

> you planned to write a meaningful article that might raise awareness and

> shed some light - and then you published this.

> You confuse mild disorders on the autism spectrum, such as Asperger's

> syndrome, with actual autism, which is quite different and much more severe.

> If the intent was to write about Asperger's being widespread and perhaps

> something that people can live with, you should have made that clear,

> without referring to it repeatedly as " autism " . However, what you actually

> wrote includes: " [Autism] is a mental style that people can learn to

> accommodate. Sometimes it's even a gift. " While someone trying to sell a

> book might argue that this applies to Asperger's, it does not apply to

> autism. Parents love their autistic children; they do not love the disease.

> Most parents of autistic children aspire for their children to

> function as well as Rain Man - he could talk, he could understand, he could

> eat, he could sleep, he didn't scream constantly, he could go to the

> bathroom and didn't need diapers. Without a lot of help or luck, many of

> these aspirations are apparently in vain. Your report only lessens the

> likelihood that they will get the help they need, and it lessens the

> likelihood of much needed prevention and research.

> You give glowing references to a theory by a psychologist in Cambridge

> about a male type of intelligence (systemizing as opposed to empathizing).

> Are you claiming that autistic girls are excessively male? If so you are

> sorely mistaken, and you insult the helpless little victims of this terrible

> epidemic.

> The references in the article don't even mention Bernard Rimland, the

> Autism Research Institute, nor any of the organizations that are actually

> doing something about the causes, prevention and cures of autism.

> The annual cost of autism to the U.S. is currently estimated by the

> Autism Society of America at around $100 billion dollars, with the annual

> cost in 10 years projected to be between $200B and $400B. This is not

> something we can just learn to love.

> You mix up accurate statements such as " Classic autism is a

> devastating neurological disorder " and " Many sufferers are mentally retarded

> and require lifelong institutional care " with misleading and incorrect

> statements such as " it has a strong genetic component " , and " [it] is

> marked by rapid brain growth during early childhood. " The epidemic of autism

> is well confirmed by numerous mainstream studies, including publications by

> the U.S. federal government and the governments of various states and other

> countries. There are no genetic epidemics. The genetic component of autism

> was advocated originally in the 1960s by Dr. Bernard Rimland, the founder of

> both the Autism Society of America and the Autism Research Institute, yet

> then as now genetics was not plausible as the primary cause. You give no

> support to your bold statement about " rapid brain growth " and in any case

> this claim, which we know has tenuous evidence from one very small study,

> does not apply to autistic people in general.

> Autism - more properly, autistic disorder - is in fact an extremely

> debilitating disorder. It is marked precisely by the symptoms that make up

> its formal diagnostic criteria, all of which are psychological observations.

> Despite the general lack of funding for truly useful research on autism, the

> studies that have been done clearly associate autism with a number of

> serious medical problems - they are far too numerous to include in this

> letter. Among these are:

> Harvard University and Mass General Hospital's current work on medical

> aspects of autism has already found that more than half of the more than 500

> autistic children they have studied had treatable gastrointestinal problems

> that ranged from moderate to severe including esophagitis, gastritis and

> enterocolitis along with the presence of lymphoid nodular hyperplasia.

> Harvard researcher Dr. Tim Buie stated in a recent report " These children

> are ill, in distress and pain, and not just mentally, neurologically

> dysfunctional, " he said. " It goes on to say " In a significant conclusion,

> Dr. Buie believes that many of the symptoms of autism such as self abusive

> behavior including self-mutilation, head-banging, unexplained outbursts,

> atypical sleep patterns, disrupted sleep or night awakenings, are actually

> symptoms of pain that a child is not able to communicate. "

> Multiple studies have shown that a majority of autistic children have

> serious autoimmunity problems, and they have persistent measles virus in

> their GI tracts and spinal fluid, while normal controls do not.

> Multiple studies, including one performed by the CDC which they

> attempted to keep secret, have shown a strong association between autism and

> mercury (thimerosal) in vaccines. A recently published study showed that

> autistic children do not excrete mercury nearly as well as normal controls,

> apparently retaining mercury in their internal organs. This factor is one

> that may indeed be related to genetics and maleness, for reasons that have

> been studied and published but rarely mentioned in the popular press.

> Imagine if Newsweek had written that heart disease has a strong

> genetic component, it has nothing to do with bad diet and environmental

> poisoning, it is just a strong expression of maleness, that persons with it

> could function just fine under some circumstances, and it is just a

> lifestyle (deathstyle?) that you can learn to love. How would that sit with

> the millions of heart disease sufferers and their survivors?

> There are powerful vested interests who dearly want to see the autism

> epidemic be forgotten. Your article is so misleading and damaging that

> millions of outraged parents and caretakers can palpably feel the insidious

> hand of the PR spin machine once again attempting to suffocate the truth.

> - MacInnis Los Altos, California

> * *

>

> Dear Mr. Cowley:

> I cannot describe the gut-wrenching frustration that I felt when I

> finally sat down and read the much anticipated Newsweek autism issue on line

> tonight. I don't believe that I have ever read a more offensive statement

> to parents of regressive autistic spectrum children, as well as myself, as

> the following line of unadulterated nonsense that follows:

> " If Baron-Cohen is right, autism is not just a disease in need of a

> cure. It’s a mental style that people can learn to accommodate. Sometimes

> it’s even a gift. "

> A gift? Surely this was a sick joke or a typographical error, I

> thought.

> While I do feel that my 9 year-old autistic twins, Ben and Joe are

> gifts from God; there autism was assuredly not. The chronic " gut " issues,

> immune abnormalities, seizures, rashes, self-injurious behaviors and

> inability to communicate (or even speak a single word in 9 years of life in

> Ben's case) is surely not a " mental style " that my sons chose. It is indeed

> a disease very much in need of a cure.

> Years ago, Bruno Bettleheim blamed mothers for autism; it certainly

> appears that Mr. Baron-Cohen now blames the children, and Newsweek is

> promoting this unfounded view. That is a shame.

> -Jeff Sell, Autism Society of America - 1st Vice Chair

> Chairman - ASA Government Relations Committee

> * *

>

> Many of those in the past and today in the world of psychiatry and

> their camp followers in the world of psychology have and continue to be the

> number one enemy of people and their families with autism. It wasn't that

> long ago these psycho-babble folks brought us " Refrigerator mothers are at

> fault " , then " autism is a rare genetic disease " , and even today many in that

> camp continue to deny the real existence of the autism epidemic. Haven't

> they done enough damage already? They have failed us in the past and

> continue to fail us today. They need to go. Our kids do not choose this

> condition. It's not a psychiatric disease. It is in a growing number of

> cases a post birth induced condition, not too much maleness!! Giving any

> credibility to the work of modern day Bettleheims is just as bad as if we

> stood by and allowed Bettleheim and his followers to go on unchallenged. It

> simply is not acceptable.

> We need to quickly remove autism from the ugly grasp of the shrinks

> and psychologists today who are truly getting in the way of progress in

> finding the real causes of autism, developing truly effective treatments,

> and yes, a cure; and, place the responsibility with finding the real

> biomedical causes of this disease with real researchers and medical

> professionals, and send these outdated and misguided people into the sunset

> for from blaming mothers, and coming up with stupid theories like " mind

> blindness " and " extreme maleness " . This crack pot thinking will do nothing

> to find the real causes of autism, nor will it bring us real treatments and

> a cure for this devastating disease.

> - Rick Rollens, Autism Advocate

> * *

>

> If Simon Baron-Cohen is on your side of the pond kindly keep him

> there! When I am speaking to autism support groups here in the UK I

> frequently quote this individual as follows:

> 'Professor Simon Baron-Cohen, co-director of the Autism Research

> Centre at Cambridge University, believes that the rise in autism is at least

> partly due to the broadening of the category. " Its a combination of greater

> awareness and changing criteria, " he says. " There's not necessarily some

> epidemic happening, and no new cause. " " There is also no cure--and no

> prospect of one for many lifetimes, if ever " .'

> If that is the philosophy of the people in charge of autism research

> (the ones who access most of the funding) is it any wonder there has been no

> real progress in sixty years! God help our kids!

> Bill Welsh

> Scotland

> * *

>

> I am very disturbed when people feel so much hatred for an individual

> because they disagree with him. As the mother of a 20-year old high

> functioning man with autism, I know that Baron Cohen and many advocates for

> adults with Aspergers and HFA are trying to help these people feel like they

> belong in society, and have a place in the world. My son has already told me

> he doesn't like it when everyone thinks he needs to be fixed, and he wants

> to be accepted for who he is.

> Simon Baron Cohen is being lambasted for saying that autism is part of

> the human condition, one extreme of something that is part of all of us.

> Maybe the way he says it is offensive, or the notion is too far from reality

> for people who have children with regressive autism. But this other reality

> does exist for my family and there are some valid points.

> - Iland

>

> -------------------------------------------------

>

> To write your own letter of complaint or praise to

> Newsweek, email to Letters@...

>

> To write to Simon Baron-Cohen: sb205@...

>

> Please carefully consider the tone of your letters,

> as you would the content.

>

> AND BE SURE TO SEND US A COPY! edit@...

>

> * *

>