Wednesday, September 30, 2009

Autism and Vaccines - Excellent Commentary at Biology in Action

On the Biology in Action site Rebecca Baker, a biology student, offers an excellent commentary on vaccines and autism "Vaccines and Autism: Many Hypotheses, But No Correlation Found" making a point with which I am in complete agreement - there is a need for more research on the issue.

On one side the commentary is a bit shallow focusing on Jenny McCarthy but not mentioning Dr. Bernadine Healy or the Poling and Banks cases ( as the mainstream media also does). BUT in exploring the other side of the debate the blog author does not give Dr. Paul Offit the free ride he gets from the mainstream media and from "autism is beautiful", Offit worshipping blogs like Left Brain/Right Brain:

Based on the radically different studies on the topic, I think that this debate has just begun. More research must be done in order to come to a definite conclusion. While reading the article I found, I had several questions. Whenever Dr. Offit was discussing one of the hypotheses, he stated that he analyzed several studies that refuted the idea. He never specified which studies he looked at. It seemed as though he did not provide enough evidence to support his findings. Also, if some children show severe reactions to the vaccines, is it not possible some kids are allergic to the vaccinations, as I am to penicillin? Because I am not convinced by both sides of the argument, more research must be conducted.

The vaccine-autism debate could use more balanced, common sense commentary like that by Ms Baker at Biology in Action.




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Tuesday, September 29, 2009

Has Autism Speaks Abandoned Severely Autistic Persons and Their Families?

I am not an Autism Speaks basher.

I have criticized specific decisions it has made such as the funding of research by Dr. Laurent Mottron who believes that the idea of curing autism is nonsense. I am appreciative though of the great work Autism Speaks has have done in raising awareness of autism around the globe including its work, in conjunction with the State of Qatar, in creating World Autism Awareness Day. A couple of days ago I thanked Autism Speaks on this blog site for the I Am Autism video which speaks some of the harsher truths about autism, particularly the severe ... and original ... autism.

But Jonathan Mitchell, at Autism's Gadfly, and Roger Kulp, who commented on this site, are correct. Autism Speaks has "kowtowed" to the Neurodiversity movement led by a gentleman with Aspergers and some Aspergers and High Functioning Autism followers. Autism Speaks has removed the I Am Autism Video from their main web site pages.

The barely autistic have once again succeeded in suppressing free expression about the harsher truths of autism, the harsher realities confronting those who would be classified as autistic BEFORE the DSM definition was expanded to include those with good or excellent intelligence, good command of language and who can have good social skills. These are the people who rise up in protest and condemn parents such as those who actually created the "I Am Autism Video" ... because they dared speak the truth. They are the people who do not want the world to know about the original, now barely visible, autistics with severe autism challenges.

Autism Speaks did not stand behind the parents who created the Autism Speaks video. By "kowtowing", as Autism's Gadfly put it, Autism Speaks has taken a huge step toward abandoning the severely autistic and their families. I have been a supporter of Autism Speaks but that support is beginning to fade as this once helpful organization aligns itself with those who do harm to the interests of the severely autistic that Autism Speaks once helped.




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Monday, September 28, 2009

Redefining Autism: Should the Autism "Spectrum" Concept be Abandoned?

Should the concept of an autism "spectrum" of disorders be abandoned?

The DSM III originally included strict criteria for Kanner's infantile autism. These strict criteria were relaxed in the DSM III-R which "broadened the concept of autism to include children who, although socially impaired, are not pervasively unresponsive to others(1)". Another huge expansion took place with the DSM IV inclusion of Asperger Disorder in the Pervasive Development Disorders category: "Asperger Disorder is characterized by the same types of social impairments seen in autism plus the development of very bizarre intense interests such as bus timetables, insects, meteorology, cartography, etc. It is distinguished from autism by the presence of normal cognitive development and the absence of clinically significant language delay. In other words, children with Asperger Disorder have normal IQ and usually are speaking in phrases by three years of age.(2)"

The PDD's have in common usage become referred to as Autism Spectrum Disorders and from there it has become common to refer to all forms of PDD's as "Autism". The expansion of the autism "spectrum" has been cited each time an increase in rates of autism diagnoses is reported. When my son was initially diagnosed in 1998 the figure of 1 in 500 persons having "autism" was commonly cited, then 1 in 250, 1 in 166, then 1 in 150 and soon the CDC is expected to fall in line with the UK figure of 1 in 100. Each time the estimate changes the expansion of the criteria for defining "autism" is trotted out to argue against the existence of a real increase in autism.

The expansion of the diagnostic criteria of "autism" disorders have become a useful tool for public health officials who wish to maintain the position that autism is entirely genetic, that there are no environmental causes and especially that autism can not be triggered by vaccines. It helps in justifying the enormous disparity in funding genetic autism research compared to environmental autism research. In 1999 Teresa Binstock reported the "it's gotta be genetic" paradigm of autism research funding. Ten years later Irva Hertz-Picciotto states that the discrepancy is still between 10 or 20 to 1 in favor of genetic over environmental autism research funding. The expanded definition explanation has been used, used again, and again in justifying the argument that there is no real increase in autism increase, that autism is entirely genetic.

The expanded definition of autism to include High Functioning Autism cases and Asperger Disorder creates confusion in the public mind over what constitutes autism and leads to conflict amongst persons affected by "autism". To many members of the public an autistic person is someone like Michelle Dawson, a former Canada Post postal worker who excelled in a very complex work environment, went on to become a researcher, appear before the highest court in Canada, before Human Rights Tribunals and in countless media interviews. They do not see the autistic person who can not speak OR communicate with assistive technology. The public does not see the persons with Autistic Disorder living their lives in institutional care.

Persons with Asperger and HFA often react to what they call negative depictions of autism which they no longer consider to be a medical disorder, equating autism with left handedness or homosexuality as differences not disorders. The recent anger amongst persons with HFA and Asperger Disorder over the "I Am Autism" video is directed at the depiction of some of the harsh realities that often accompany Autistic Disorder. These people do not want to be associated with intellectual deficits, serious behavioral issues or serious family or societal expense. It hurts and offends some with HFA and Aspergers to be compared to people with severe Autistic Disorder, people like my son.

The "spectrum" concept that helps create confusion also helps create some confusion in autism research. Researcher Dr. Laurent Mottron works almost exclusively with HFA/Asperger subjects and his research often been aimed at demonstrating the innate abilities of persons with HFA/Asperger Disorder. Historically Dr. Mottron was conscientious about pointing out that his subjects were persons with HFA/Asperger Disorder as opposed to persons with Low Functioning severe Autistic Disorder. Some recent studies have not made that distinction clear and his studies are also interpreted by many as applying to "autism" generally. It is difficult to compare autism studies or data over extended periods of time because of the different ways in which autism is referred to in the research literature with some making clear distinctions between low functioning Autistic Disorder and those with HFA or Aspergers while others simply refer to Autism.

One of the most bizarre consequences of the expanded definition of autism in the DSM-III R and DSM-IV is the attempt by some persons with Asperger Disorder to extinguish the right and responsibility of parents to speak on behalf of their autistic children or to seek treatment and cure for their children. The "Autism" Self Advocacy Network is led by Ari Ne'eman a very high functioning person with Asperger Disorder whose disorder would not have been included in the "autism" spectrum in the DSM-III or the DSM-III-R.

Why Mr. Ne'eman and his followers are not content to call themselves the Asperger Self Advocacy Network is not clear. Why this very high functioning person with Asperger Disorder feels that it is legitimate for him to speak on behalf of all persons with Autism Disorders of any type and declare that they do not want to be cured is not clear. Why he, and his followers, feel it necessary to lobby against any negative depiction of autism is not clear. Why he, and his followers, feel that they have the right to dictate to parents that they should not seek to treat or cure their own children of a severe neurological disorder is not clear.

What is clear is that the Pervasive Development Disorder category of the DSM has morphed into the Autism Spectrum and from there to "autism" and this has not been helpful.

Maybe it is time to abandon the Autism "Spectrum" and establish two separate categories with Autistic Disorder comprising classic autism while HFA and Aspergers Disorder are placed together in one category .... Aspergers Disorder.

Or perhaps a better solution to the Autism Spectrum confusion would be to abandon the spectrum concept altogether by removing HFA and Asperger Disorder from the DSM leaving only Autistic Disorder as a category for those with severe or low functioning autism. Many persons with HFA and Aspergers argue that they do not have a medical disorder at all. Maybe it is time to acknowledge their arguments, remove Asperger Disorder from the DSM, and go back to the DSM III criteria for Infantile Autism or Autistic Disorder.




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Sunday, September 27, 2009

Thank You Autism Speaks for I Am Autism

Autism Speaks, with its brutally honest new video "I Am Autism", has broken Commandment #6 of Neurodiversity's Ten Autism Commandments which forbids any negative depictions of autism.

The information in the video is not presented delicately but the challenges faced by persons with severe autism and their families are depicted honestly, perhaps too honestly for many. But the people most upset by this video are those who subscribe to the belief that autism is not a disorder but rather something to be celebrated.

My son Conor is severely autistic and he and our family have experienced many of the challenges featured in I Am Autism. I applaud Autism Speaks for breaking the absurd taboo against speaking the truth about autism disorders imposed by those who do not share the realities of severe autism; people like Ari Ne'eman, the very high functioning, intelligent person with Aspergers who does not share the challenges of persons with severe Autistic Disorder. These "Autism" Self Advocates and Neurodiversity ideologues protest because they have essentially co-opted autism disorders since the expansion of the DSM criteria in 1994. They like to call themselves "autistics" and "auties" but they do not want to acknowledge the harsher realities of the severely autistic. The severely autistic are shunted into the closet of suppressed speech where they can remain invisible and not offend the sensibilities of the HFA/Aspergers leaders of the self advocacy movement.

I will speak the truth about autism and I will not be cowed by those who have it much better than my son. I find the continuing attempt to suppress the truth about autism to be offensive and a violation of my son's most basic rights of expression through me and others who speak honestly about his condition.

Thank You Autism Speaks for speaking the truth about autism ... the real autism.




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Yes Mom I REALLY Am Taller Than You

Conor leaves no room for doubt. He really is taller than Mom. And at 13 he has lots of time to zoom by Dad too.






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Saturday, September 26, 2009

Autism Redefined

The Neurodiversity people have been very successful at redefining the word Autism. The word now means "exceptional intelligence." If an autistic child suffers any deficit at all, it's a "comorbid" condition.

Tony Tamer, British Columbia Autism Advocate




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Friday, September 25, 2009

Conor Lowers the Canadian Flag On a Brisk Fall Friday Afernoon

It was Freaky Friday weather wise with rain to start the day turning to sun with a good breeze and sunshine turning back to rain and so on. But the weather was just right when Conor ended his school day with one of his favorite activities, lowering the flag, the Canadian Flag, his favorite.









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Thursday, September 24, 2009

Autism Myth Making and Sloppy Autism Journalism at the UK Guardian

The UK Guardian is practicing sloppy autism journalism, peddling as fact the speculation that Mozart, Orwell, Einstein, Beethoven and Newton were autistic:

"Mozart, Orwell, Einstein, Beethoven and Newton all had it, and now new research funded by the Department of Health shows that one in every 100 adults has it too – autism, that is."

These historical figures all lived before autism disorders were recognized as medical conditions and none of them were diagnosed during their life times by a treating medical professional. But it makes for a good article intro line. Mozart may have been eccentric but he also lived out his career in a very demanding, highly social environment, married and had several children. So where is the autism?

Autism Speaks is currently being ripped by the persons with Asperger's Disorder who purport to speak on behalf of all persons with ASD's, including those like my severely autistic son with Autistic Disorder, because of a new video which portrays autism disorders in a negative light. Speculation about historical figures who might have been autistic is fine though as long as they were extremely intelligent or talented.

The UK Guardian is happy to practice sloppy autism journalism to accommodate those whose agenda focuses on recasting autism, changing public perception of it from the disorder which restricts the lives of so many of our children, to a blessing in disguise. Maybe the UK autism "journalists" should join my CBC friends in visiting an institution where some persons with actual, severe autism disorders spend their lives. Maybe then both institutions of journalism would cease glorifying what for many is a severe, life limiting disorder.





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Wednesday, September 23, 2009

Why the Big Pharma, Pro-Vaccine Cult is Losing the Vaccine-Autism War

Why prove to a man he is wrong? Is that going to make him like you? Why not let him save face? He didn't ask for your opinion. He didn't want it. Why argue with him? You can't win an argument, because if you lose, you lose it; and if you win it, you lose it. Why? You will feel fine. But what about him? You have made him feel inferior, you hurt his pride, insult his intelligence, his judgment, and his self-respect, and he'll resent your triumph. That will make him strike back, but it will never make him want to change his mind. "A man convinced against his will is of the same opinion still.

Dale Carnegie, How to Win Friends and Influence People


If you support vaccine programs as important public health tools then you are probably insulted, and not persuaded at all, by the title of this blog comment. If anything you will have dug in your heels in opposition to anything further that I might have to say. I doubt that Dale Carnegie would try to persuade people with opposing views to change their mind by insulting them.

Yet, that is exactly what is done every day by media editorial writers, bloggers and even health care professionals who dismiss parents concerned about vaccines being injected into their own children as hysterical. Anyone who asks questions about vaccine safety is branded as a nut, a hysterical parent, ignorant and ill informed, a conspiracy theorist etc. Is it any wonder that parents are not persuaded by such obvious attempts to marginalize them, to dismiss them and their concerns, to insult them?

Directly related to the use of insults to marginalize parents is the disregard for parents direct observation of what is happening to their children. Science, to this layperson anyway, must rely on actual observation as a basis for its method. No one has more direct, prolonged opportunity to observe their children then the parents who live with and care for those children. Yes, other issues arise because of the intensity of that emotional connection but the fact remains that it is parents, not Paul Offit, who actually observes their children, see them progressing and enjoying the milestones typically involved in infant development. It is parents who witness their children regress into autism disorders after vaccination that are in the best position to assess what has happened to their child.

The parents observations are, contrary to some statements that there is no evidence of vaccine autism links, exactly that. This direct observation does constitute evidence, albeit anecdotal evidence, that vaccines caused or contributed to their children's' autism disorder. Dismissing these observations as coincidence is not persuasive unless YOU can prove that it is a coincidence.

There have been a number of epidemiological studies done which are used to argue that science has conclusively disproved a vaccine autism link. Yet those studies have been subjected to what appears to be valid criticisms. The Danish study is perhaps the most notorious example. It compared autism rates before and after thimerosal was removed from vaccines in Denmark, Yet the study itself points out that the comparisons were questionable because of the different groups examined in the different time frames. The Danish study looked at autism rates in the period from 1972-2000. As everyone knows who argues against a real increase in autism rates, the diagnostic criteria for autism changed in the early 90's making it difficult to draw firm conclusions from that study. Perhaps equally as negative about the Danish study is that it was conducted after serious prodding by American health authorities who wanted to dispel a vaccine autism connection.

The epidemiological studies are observational. They do not test an hypothesis in a controlled experiment. No observational studies of vaccinated and unvaccinated populations have been conducted despite existing unvaccinated populations and despite calls for such a study from parents and professionals concerned about possible vaccine autism connections. Dr. Insel did not persuade any persons with vaccine and autism concerns that vaccines are not connected to autism when he appeared before Senator Harkin's committee and declared that an observational study comparing autism rates in vaccinated and unvaccinated populations could not be done. His statement was directly contrary to those of Dr. Bernadine Healy (former NIH head), Dr. Julie Gerberding (former CDC director) and Dr. Duane Alexander, a member of the IACC to the effect that such a study COULD be done. Dr. Healy and Dr. Gerberding have both said that such a study SHOULD be done. When public health authorities refuse to undertake credible research to examine the vaccine autism issue and yet state to the media that the matter is closed, that science has determined the issue conclusively and for all time, their credibility is undermined, their ability to convince concerned parents is weakened.

Dr. Healy, in calling for more research on vaccine autism issues, has pointed out that the epidemiological studies are not specific enough to address vulnerable population subgroups. The Poling case is a perfect example of the validity of that criticism. Not all people are constructed the same. The effect of a vaccine on one person may not be the effect of a vaccine on another. In the Poling case autism resulted from the impact on the child's mitochondrial disorder. Dr. Healy has called for a variety of studies to examine further the vaccine autism issue. Yet her name rarely appears in media summaries of the issue which prefer to paint the issue as Jenny McCarthy against the scientists.

If public health authorities want to restore public trust in vaccines they should do the research that Dr. Healy has called for. They should conduct the observational study comparing existing unvaccinated and vaccinated populations and stop pretending that it can not be done. They should stop pretending that science has conclusively decided the issue when too many people know that not to be true and refuse to be bullied and intimidated. Public health authorities should not be afraid to do more homework to ensure that the chemical and biological concoctions they are insisting people inject into their children are safe in all instances.

If public health authorities want to restore public trust in vaccines and convince us all that vaccines do not cause or contribute to autism they should stop condescending. They should start treating parents like what they are in this matter ... the front line researchers whose observations are invariably the first stage in recognizing and understanding autism disorders in their children. They should start treating those parents with the respect they deserve. Their failure to do so to date has been the biggest reason why they are failing to convince some parents that vaccines are safe. It is the biggest reason the public health authorities are losing the battle to restore public confidence in the safety of vaccines. If you don't believe me, check with Dale Carnegie. He left us with some notes on the subject.




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Tuesday, September 22, 2009

Swine Flu Vaccine and Autism Debate: CANWEST & Fitzpatrick Publish 3rd Version of Same Article

UPDATE The original full unedited version of the article is now online again and the 2 cropped versions removed

CANWEST News and Meagan Fitzpatrick have published yet another, a third, version of the article firs published yesterday on the Swine Flu vaccine refueling the autism debate. This 3rd version is expanded to reinsert information about Jenny McCarthy but does not include my comments or more importantly those of UWO researcher Dr. Derrick MacFabe.

The article does not mention that Dr. MacFabe, Dr. Bernadine Healy (a former NIH and American Red Cross head), Dr. Julie Gerberding ( a recent CDC head) and Dr. Jon Poling (a neurologist, professor and father of an autistic child who successfully established a claim in the US vaccine court on behalf of his daughter whose autism was caused by vaccine insult to her pre-existing mitochondrial disorder). All of these people have called for more research on vaccine autism issues. Dr. Derrick MacFabe was mentioned in the 1st of the 3 "autism debate" articles published yesterday but not in the 2 redrafts published today.

The effect of the latest draft is to cast the dispute as one led by actress Jenny McCarthy on the side of those concerned with vaccine autism issues, without any mention of the professional calls for more research on the vaccine autism issue.

H1N1 vaccine arrival refuels autism debate

The much-anticipated H1N1 vaccine has given new life to an ongoing debate about whether vaccinations in children can cause autism, a discussion that will likely heat up as Canada and other countries move closer to releasing the new vaccine.

From one side of the debate come assurances that vaccines are safe and there is no conclusive link to autism; from the other, warnings that there is a relationship and parents should think twice about giving shots to their children.

Canada's chief public health officer, Dr. David Butler-Jones, has repeatedly said that vaccines have a long history of being safe and effective.

Weighing in on the autism debate, he noted that vaccines are given to children at around the same age as when neurological disorders can surface.

"You can have a close time frame," he said.

"Just because something's associated in time does not mean it's causal."

Butler-Jones said he recognizes that parents are searching for answers about autism's cause, but added claims that vaccines are the culprit have not been proven.

"The studies have been pretty clear and consistent that vaccination is not the cause of many of the things that have been claimed around the vaccine,"he said.

The benefits of immunization far outweigh the risks, said Butler-Jones, but he understands people need to think carefully about it.

"It's important that they get the facts -- not the theory, not the conjecture, not the claims -- but the actual facts about what we know about the vaccine and the disease and I think . . . virtually everybody would choose the vaccine," he said.

The theory that childhood vaccines are behind an upsurge of autism cases emerged in the 1990s and in recent years has gained high-profile advocates such as Hollywood star Jenny McCarthy, whose son was diagnosed with autism.

McCarthy is among those who believe children receive too many vaccines, too close together, and that a mercury-based preservative called thimerosal used in some vaccines is harmful. She is passionate about her cause, but she has her critics who are equally fervent on the pro-vaccination side of the debate.

- - -

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CANWEST News and Megan Fitzpatrick Re-Publish Article, Change Swine Flu Vaccine and Autism Story

UPDATE The original full unedited version of the article is now online again and the 2 cropped versions removed.

I am reposting in their entirety 2 articles, one published yesterday, September 21, 2009 by Megan Fitzpatrick and the same story re-published today September 22, 2009 with half of the article edited out. The effect of the editing is to omit any middle ground quotes, including from me, and from autism researcher Dr. Derrick MacFabe of the University of Western Ontario on the need for parents to be heard on the issue of vaccines and autism and the need for further research on the issue. The further effect of the editing is to recast the whole debate as one between a celebrity activist parent and the medical community.

Many news organizations have followed the NYT lead and reported nearly verbatim the position of Dr. Paul Offit, vaccine patent holder, and consequent multi-millionaire, without mentioning that respected professionals like Dr. Bernadine Healy, Dr. Julie Gerberding and Dr. Jon Poling have all called for more research on the issue of vaccine and autism connections. The original version of the Fitzpatrick article displayed some balance. The edited version does not.

The two stories which I repeat verbatim because the two stories are now themselves news items are repeated, first today's shortened version, then yesterday's longer version with the omitted segment in bold italics.

Judge for yourself the difference.

H1N1 vaccine arrival refuels autism debate

The much-anticipated H1N1 vaccine has given new life to an ongoing debate about whether vaccinations in children can cause autism, a discussion that will likely heat up as Canada and other countries move closer to releasing the new vaccine.

From one side of the debate come assurances that vaccines are safe and there is no conclusive link to autism; from the other, warnings that there is a relationship and parents should think twice about giving shots to their children.

Canada's chief public health officer, Dr. David Butler-Jones, has repeatedly said that vaccines have a long history of being safe and effective.

© Copyright (c) Canwest News Service

..............................................................

Flu vaccine rekindles debate over connection to autism
























The much-anticipated H1N1 vaccine has given new life to an ongoing debate about whether vaccinations in children can cause autism, a discussion that will likely heat up as Canada and other countries move closer to releasing the new vaccine.

From one side of the debate come assurances that vaccines are safe and there is no conclusive link to autism; from the other, warnings that there is a relationship and parents should think twice about giving shots to their children.

Canada's chief public health officer, Dr. David Butler-Jones, has repeatedly said that vaccines have a long history of being safe and effective. Weighing in on the autism debate, he noted in a recent interview with Canwest News Service that vaccines are given to children at around the same age as when neurological disorders can surface.

"You can have a close time frame," he said. "Just because something's associated in time does not mean it's causal."

Butler-Jones said he recognizes that parents are searching for answers about autism's cause, but added claims that vaccines are the culprit have not been proven.

"The studies have been pretty clear and consistent that vaccination is not the cause of many of the things that have been claimed around the vaccine," he said.

The benefits of immunization far outweigh the risks, said Butler-Jones, but he understands people need to think carefully about it.

"It's important that they get the facts — not the theory, not the conjecture, not the claims — but the actual facts about what we know about the vaccine and the disease and I think . . . virtually everybody would choose the vaccine," he said.

The theory that childhood vaccines are behind an upsurge of autism cases emerged in the 1990s and in recent years has gained high-profile advocates such as Hollywood star Jenny McCarthy, whose son was diagnosed with autism. McCarthy is among the people who believe children receive too many vaccines, too close together, and that a mercury-based preservative called thimerosal used in some vaccines is harmful.

McCarthy is passionate about her cause, but she has her critics who are equally fervent on the pro-vaccination side of the debate.

Harold Doherty, a New Brunswick parent who writes a blog about his son's experience with autism, says his opinion on the controversy lies somewhere in the middle.

"While I once accepted without questioning the public health authorities' position that there is no vaccine-autism connection, I am no longer so sure," he posted in one entry. In an interview, he told Canwest News Service that not enough research has been done for him to accept or reject the theory.

"I've never said that my son's autism was caused by vaccines, or that vaccines have been proven to be a factor. I do believe that the research has not been sufficient to rule it out," said Doherty.

There will be no end to the "vaccine-autism war" unless an observational study is done comparing autism rates between vaccinated and unvaccinated populations, according to Doherty, and the H1N1 immunization program that will get underway this fall is an opportunity for such a study, he said.

Thimerosal has been removed from most of the vaccines given to children, but it is contained in influenza shots, including the new H1N1 vaccine.

Public health officials have said the vaccine will be ready in early November and children age six months to five years are among those who should get it first.

The Public Health Agency of Canada's most recent statement on thimerosal, issued in 2007, concluded that the weight of evidence refutes any link between thimerosal and autism, but that the long-term goal of removing the preservative from vaccines is advisable as a way to reduce total environmental exposure to mercury.

Dr. Derrick MacFabe, an autism researcher based at the University of Western Ontario in London, said parents who believe their child developed an autistic disorder after being immunized must be heard.

"These people's stories about what's happened to their children are completely valid," he said. "You can't deny what these people are saying."

At the same time, people shouldn't have "tunnel vision" when it comes to pinning autism on a single cause, he said. Vaccines should continue to be studied, but so should a host of other factors, including environmental toxins and infectious agents, said MacFabe.








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Swine Flu Vaccine and Autism: Some Disturbing Reporting by Megan Fitzpatrick

UPDATE The original full unedited version of the article is now online again and the 2 cropped versions removed

UPDATE: Shortly after I posted the following blog the article I checked on line and found that the original report from yesterday had been reposted by Megan Fitzpatrick and CANWEST.

The article was modified to omit my comments and those of Dr. Derrick McFabe. The result was to recast the debate as one beween parents and the health care community. For that reason I modified my blog comment title from "refreshingly balanced reporting" to "disturbing reporting". See my next post on this subject for more.

Harold Doherty

I was pleased to see the balanced reporting by Megan Fitzpatrick of CANWEST NEWS SERVICE in her report on the H1N1 Swine Flu Vaccine and a possible autism connection in Flu vaccine rekindles debate over connection to autism. I was interviewed for that article and Ms Fitzpatrick placed me accurately, and fairly, as being in the middle on vaccine autism issues. I no longer accept without questioning the official opinion that vaccines play no role in causing or triggering autism, and I do not believe that parents' observations of their child's development should be dismissed. I believe that more research needs to be done, a belief inspired by several prominent professionals including Dr. Bernadine Healy, Dr. Jon Poling and Dr. Julie Gerberding.

The article reported comments from Dr David Butler-Jones, Canada's chief public health officer, whose voice has been everywhere during this alleged swine flu pandemic. The public positions of Jenny McCarthy are reviewed along with some comments from autism researcher Dr. Derrick McFabe of the University of Western Ontario who stated that parents who believe that their children's autism resulted from vaccinations must be heard.

There have been a string of one sided media reports since the New York Times public relations style interview with Dr Paul Offit. It appears that many journalists have abandoned any pretense of old fashioned objectivity and have chosen to enlist fully in Offit's Army. They repeat ad nauseum his simplistic assertions that the research is "done" and that "science" has conclusively determined that there is no vaccine autism connection. In reading Ms. Fitzpatrick's article it was refreshing to see an honest attempt to convey all sides of the issues from multiple sources.

One omission from my interview that I wish Ms Fitzpatrick had included in her article is that I informed her that my belief that an observational study comparing autism rates between vaccinated and unvaccinated populations should be done is not my original idea. My belief is based on the statements of Dr. Bernadine Healy, Dr. Julie Gerberding, Dr. Jon Poling and other respected professionals who do see a need to conduct further research on possible vaccine autism issues .... and other possible environmental factors causing or triggering autism disorders. Media narratives invariably portray the vaccine debate as one pitting parents against doctors and professionals without mentioning that some credible health care professionals are of the view that the science is not "done" or concluded on these issues, that more research needs to be conducted.

What might be original in my comments is the notion that we may in fact be undergoing an unintended experiment on some vaccine autism issues with the public health authorities response to the current alleged swine flu pandemic. Not everyone agrees that we are in fact facing such a pandemic. Not everyone will be taking the swine flu vaccine. Those who are targeted - pregnant women and young children, will in some cases be receiving shots which include thimerosal and an adjuvant known as squalene which caused serious harm to Gulf War soldiers. If the young children receiving the shots, and the new born children of women who received the shot while pregnant have significantly higher autism rates than those who do not receive the shots will Offit, health authorities, and most of the mainstream media just ignore that information? Will they continue to decree in very unscientific like manner that the science is closed on these issues?

We will only know the answers if the data is recorded and made known. At this time we do not know if that will be done. We do not know if public health authorities will begin to take autism spectrum disorders, and the parents of children with autism, seriously.

We can only hope.




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Sunday, September 20, 2009

Environmental Autism Research Study Follow-Ups? Let's Even Out Genetic and Environmental Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

Recent years have seen the "it's gotta be genetic" stranglehold on autism research funding identified by Teresa Binstock in 1999 break slightly, albeit ever so slightly, with genetic research still overwhelmingly favored for funding purposes at the expense of environmental autism research as reflected in the above quote from Irva Hertz-Picciotto. The obvious danger is that if you look for genetic causes you will find genetic causes and nothing more. If you do not look for environmental causes of autism then those environmental causes will not be found. Possible preventive measures may never be discovered and undertaken and even cures may be missed.

Two studies of particular interest to me were published in the last two years with the authors of both studies qualifying their conclusions with the caution that more research was required, more follow up needed to be done before any firm conclusions could be reached.

The authors of Proximity to point sources of environmental mercury release as a predictor of autism prevalence, Raymond Palmer, Stephen Blanchard and Robert Wood, found that "environmentally released mercury from power plants in 1998 is significantly associated with autism rates in 2002. For every 1000 pounds of release there is a corresponding 3.7% increase in autism rates." The authors also found that "for every 10 miles away from the source, there is a significant 1% decrease in the autism Incident Risk. A 20-mile distance would yield a 2.2% decreased risk."

Palmer, Blanchard and Wood were careful to point out that their study should be viewed as "hypothesis generating" with further research required to examine the role of environmental mercury and childhood developmental disorders. The authors pointed out other existing research related to environmental mercury and autism disorders:

"a host of other plant, animal and human studies have demonstrated that distance to sources of environmental mercury exposure are related to increased body burdens of mercury(Ordonez et al., 2003; Fernandez et al., 2000; Hardaway etal., 2002; Navarro et al., 1993; Kalac et al., 1991; Moore and Sutherland, 1981). However, the effects of duration and dose amounts of environmental exposures are not currently known—and we do not know that body burden of mercury is in fact related to the potential exposure measures used in these analyses.

Mercury is a known immune modulator (Moszczynski,1997). These effects include the production of auto antibodies to myelin basic protein (El-Fawal et al., 1999) and effects on the ratio of Th1/Th2 immunity factors (Kroemer et al., 1996). This is consistent with the literature demonstrating similar types of altered immune function in autistic children (Singh et al., 1997; Singh and Rivas, 2004; Krause et al., 2002; Cohly and Panja, 2005; Vojdani et al., 2003).

I previously blogged about a study noted in the Toronto Star concerning the effects of pollution from two Hamilton, Ontario steel mills on mice living down wind from the mills. The study Germ-line mutations, DNA damage, and global hypermethylation in mice exposed to particulate air pollution in an urban/industrial location was published in PNAS :

"Mice breathing the air downwind from Hamilton's two big steel mills were found to have significantly higher mutation rates in their sperm, a new Health Canada-led study says.

While there's no evidence that residents of the area are experiencing the same genetic changes, the project's lead author says the findings do raise that question.

"We need to do that experiment and find out," said Carole Yauk, a research scientist with Health Canada.

A future study will look at "DNA damage in the sperm of people living in those areas."

...

Dr. Rod McInnes, director of genetics at Canadian Institutes of Health Research, said the mice could be "the canary in the coal mine" signalling the genetic risks to humans of breathing toxic air. ... While genetic changes in sperm would not affect a male directly, they'd get passed on to the offspring that receive his DNA.


Why did this particular story grab MY attention? We lived on Leominster Drive, in the westerly area of Burlington adjacent to Hamilton for 12 months prior to Conor's conception and a further 9 months until he was born at the Joseph Brant Memorial Hospital in Burlington. Two years later he was diagnosed with PDD-NOS, shortly thereafter changed to Autistic Disorder with profound developmental delays.

No, I have not jumped to any rash conclusions concerning the Hamilton steel mills study but I would certainly be interested in any follow up studies done or planned as suggested by lead author and Health Canada research scientist Carole Yauk Ph. D., who stated that an experiment needed to be done to find out whether residents living in the area would suffer the same consequences. I actually emailed Dr. Yauk and asked about the prospects for the follow up study she had indicated needed to be done. She said she was optimistic that funding would be obtained but that such experiments were very expensive and obtaining grants was very competitive. I don't know if Dr. Yauk was ultimately successful in obtaining funding for her experiments. Hopefully the funding was found.

How about it Autism Speaks? Can you chip in to provide funding for some badly needed environmental autism research?

In the opinion of this humble autism dad it is long past time to shift some of the research funding from the overwhelmingly genetic oriented autism research to environmental based research.

20 to 1 doesn't sound right. Equal parts, 1 to 1, genetic to environmental autism research sounds a whole lot better.




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Saturday, September 19, 2009

Summer's Last Weekend











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Stupid Autism Parents?

Apparently there are a lot of SAPs, Stupid Autism Parents, behind all the uproar over possible vaccine autism connections.

Those parents who accept the official view that autism is 100% genetic and that substances injected into young children can not possibly disrupt or damage their neurological systems are smart, good guy parents. Those who want to treat or cure their children, who question vaccine safety, the combinations of vaccines, the frequency of vaccines and the biological and chemical agents contained in vaccines are ..... well .... just not that smart.

Being a Stupid Autism Parent who believes that autism is a disorder for which a cure is badly needed, that it results from an interaction of genetic and environmental factors and that vaccines MIGHT play a role in causing or triggering autism in some cases I was grateful to learn from a discussion at "Aspies for Freedom" that it is just my own stupidity that leads me to such erroneous beliefs and irrational concerns. In the end parents who post at Autism Speaks are stupid and parents who post at Aspies for Freedom are smarter. It's true, Aspies for Freedom says so.

Aspies for Freedom is a site which appears to be dedicated to the rights of "Aspies" to be free, although free in what sense is not clear since most of the posters appear to reside in the US, UK and Canada where fundamental freedoms are constitutionally entrenched. Perhaps it means freedom to determine what is best for other people's Autistic children? Aspies for Freedom started a highly enlightening, intellectually sophisticated discussion topic called:

A General Comparison Between Parents on This Forum and Parents on Autism Speaks

The general gist of the opening post, by a brilliant intellectual posting as Mars Mariner, and subsequent discussion is that parents who post at Aspies for Freedom are smart and parents who post on the Autism Speaks forum are well ... not so smart:

Post 1

I would make a general comparison between parents here and parents on Autism Speaks. Again, this is a very general comparison, one that I do not intend as a slander against the parents on the "other" forum. However, my sense is that parents here enjoy a greater level of education and critical faculties than their peers on the other forum. It is not my intent to belittle the earnest and sincere parents on Autism Speaks. However, it seemed from my experience there as though they were not discerning people. My sense is that they were younger, not college educated, and more susceptible to seeing the world simplistically. I may be wrong in my perception, but that seems like a general rule of thumb.

I am not coming at this from an elitist perspective (I hope not). Rather, I am sincerely recalling my experience there. What disturbed me, however, was one other difference between parent cultures there and here. Parents there seemed not to care about children beyond their own to the degree that parents here do. It was not so much that they agreed with the torture going on at the Judge Rotenberg Center; more that they did not care too much about the sphere beyond their immediate concern. Parents here seem a lot warmer.

If I am mistaken, or if I have over-generalized, I apologise. Again, I think that parents on the other forum are more likely to look at reality simplistically. A lot of them were disaffected with Autism Speaks because it will not endorse the vaccine view. Autism Speaks endorses establishment positions, while the anti-vaccine people are decidedly against the pharma cartels. However, both factions, the establishment eugenicists and the anti-establishment vaccine people, believe in Neurotypicalism. Neither side can see Autistic people as having positive contributions to make. Both see a "problem," to be cured in a society dedicated to Enlightenment modes of rational problem solving.

In summation, my time there was somewhat disturbing. I wanted to like the parents there, but found that I could not relate to most of them. Few of them were even interested in what I had to say enough to tell me to shove...whatever they would tell me. This was disturbing, because I was willing to be of assistance as much as possible with what I could help.

However, it is also possible that few parents of intellectually inclined Autistics visit that forum. It is possible that more such parents are here than there. Hence, my experiences may not have been of value to them. My time there was brief, and rather unproductive. To top it off, the moderators there allowed a pornographer to spam the whole website, one visited by children! I will never return.

Another intellectual giant writing as Pakrat chipped in:

Post 2

RE: A General Comparison Between Parents on This Forum and Parents on Autism Speaks

I also notice on FB that the old chestnut of vaccine causing autism is very much alive and some of the parents disbelieve the evidence discrediting the supposed link. One woman got incredibly hysterical when I told her that vaccines did not cause her brother's severe autism. She made all kinds of insults against me which I found amusing since they were so ludicrous but it goes to show that when there is an emotive subject, reason can be quite lacking.

Yes, I believe the parents here are generally brighter and more deep thinking than in sites such as Autism Speaks. It's also possible though that the other parents have more severely affected children and therefore were exposed to more hype about "cures" and more indoctrination about the "tragedy of autism". People who prey on desperation are indeed despicable and all too common.

The discussion was also enlightened by one of the "smart" parents, posting as "atypical", who frequents the Aspies for Freedom site and, not surprisingly. agrees with the proposition that parents who frequent Aspies for Freedom are smarter than those at Autism Speaks:

Post 4

I think that if we/us parents seem brighter - it may be because -we found this place and stayed because the people here remind us of our children - or something in ourselves. Not average and mundane, but interesting, complicated, freedom lovers (It's in the name!)...

I feell lucky to have a different way of looking at things -I/WE ARE LUCKY TO BE AWARE, it is a blessing to see things in an atypical way AND instead of us changing our children, our children change us.


I am probably just not as smart, or as "aware", as "atypical" but I do take autism seriously as a disorder which seriously restricts the life opportunities of my son. It is in truth sad to see some persons with Aspergers Disorder, and some parents, posting such offensive material on the site, one of the alleged "Autism" Hub sites.

I know some persons with Aspergers and High Functioning Autism who do not indulge in such foolish, offensive trash talking and who do in fact show respect for the rights and responsibilities of parents to do the best they can to help their children live the fullest life possible. It is too bad that the "intellectuals" at Aspies for Freedom and other Autism Hub web sites don't display the same good character.

In the bigger picture the demeaning characterization of parents who seek cures for their autistic children or those who question vaccine safety as less intelligent than those who embrace their children's autism disorder as a blessing and do not question what gets injected into their young children's bodies is not much different than the marginalization of parents conducted by Paul Offit and other government and pharmaceutical spokespersons.

Offit and company also want the public to believe that parents who question vaccine safety are of lesser intelligence. Parental observations, no matter how many times the same pattern occurs are dismissed as coincidence. Parents, ALL parents who question vaccine safety are gullible fools seduced by charlatans ... or they are hysterical wing nuts because some apparently committed criminal, threatening acts toward Dr. Offit and his family.

And so we can just ignore ALL parents who see their children regress into autism after vaccination (unless they are a neurologist who can not be ignored or marginalized like Dr. Jon Poling).

If only those Stupid Autism Parents would just do as they were told.




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