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Neurodiversity Ideologues Strange Silence on Aspergers Man Convicted of Conspiring to Murder his Parents

Neurodiversity bloggers seldom fail to comment on any autism or Aspergers related news event. Invariably they put the Neurodiversity spin on autism disorders as they play out in the real world. It is strange that with news of the conviction of a 25 year old man with Aspergers Disorder,Christopher Monk, not a word has been splashed on the internet by the ND bloggers.


(Photo - Christopher Monk)

Christopher Monk has been convicted by a British court of conspiring to have his parents murdered.   Mr. Monk, despite being 25 years old, lived with his parents who doted on him even while he spent much of his time on the internet.  One of his male friends who he met on line agreed to kill his parents at Monk's urging but failed when they fought back. The parents, notwithstanding their son's hideous crime, remained supportive of him through the trial and sentencing.


There has been no comment from the ND crowd about this case.  If this story were about a crime by parents against a child with autism or Aspergers the Autism Hub would be buzzing with diatribes against the evil parents.  Yet the ND crowd ignores a conviction of a man with Aspergers of conspiracy to murder his parents. The implications of a case such as this for an irrational ideology which sees Aspergers and Autism as just differences not disabilities or disorders is not mentioned because the case itself is not mentioned.  The strange silence of the ND crowd on this case speaks volumes about the irrational ND ideology.





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HBOT Treatment for Autism? Avoid the Autism Hub, Read "Translating Autism"

Anyone reading blog commentaries about the latest HBOT study, or any other autism treatment study, should seek credible analysis from detached, professional sources if they want a proper understanding of the study in question. Any bloggers listed at the Autism Hub should be avoided unless you are simply seeking an example of the anti-cure element of the neurodiversity cult and the extent to which it colors their commentaries. If you are seeking balanced, objective commentary about the HBOT study avoid the AH-ND bloggers and check out Autism Research Blog: Translating Autism by Nestor Lopez-Duran Ph.D.

Nestor Lopez-Duran is a a clinical child psychologist and neuroscience researcher working at a large Midwest university-based child psychiatric institute. His Translating Autism blog is easily one of the best on the internet for obtaining rational, balanced and professional assessment of autism studies of any kind. I mention it frequently on this blog and believe it should be a bookmark for anyone with a genuine interest in autism disorders and autism studies. Mr. Lopez-Duran has commented on the recent Rossignol HBOT study in Hyperbaric treatment for children with autism: First controlled clinical trials and provides an assessment of the studies strengths and weaknesses including the perception that the authors of the study are in a conflict of interest - not as a way to trash the study but to point out ways the study could have been improved. He comments on the merits of the study:

"The authors found that hyperbaric treatment resulted in significant improvements in overall functioning, receptive language, social interaction, and eye contact. These findings were affected by the age of the child, in that children over the age of 5 showed more improvement to the treatment than children under 5. In addition, the treatment did not seem to work for children with an initial ADOS score above 50th percentile. This indicates that the treatment is most effective with children with more severe autism (ADOS score below the 50th percentile).



In general, the study design was strong. The authors made great efforts to make sure that the two treatment conditions were nearly identical. That is, kids in the control condition were exposed to procedures that mimic the real hyperbaric treatment (being inside the chamber, etc). Thus, it is very unlikely that the results observed were due to a placebo effect. The study also moves in the right direction by presenting evidence for the efficacy of treatments that are usually considered controversial or untested. We need more research on alternative treatment interventions that will help us determine which interventions are actually effective."

By contrast to the objective, informed "translation" by Lopez-Duran of the Rossignol HBOT study, Autism Hub and Neurodiversity commentators simply mock this and any other study which suggests that an autistic child might benefit from a specific treatment for autism. The reason for the knee jerk, lock step reaction of AH-ND members to studies of autism treatments is simple - they are anti-cure, anti-treatment. They do not want to be treated for their autism, or do not want THEIR loved ones with autism treated, and they do not believe that parents and other caregivers should be permitted to treat or cure autism in their own autistic loved ones or patients. Any study which purports to show the effectiveness of an autism treatment is anathema to them. (Hence the hostility by AH-ND bloggers towards ABA, parents seeking ABA for their own children, and ABA practicioners).

Do'C at Autism Street is one of the leading AH-ND "scientific" minds. In a recent post about the Rossignol HBOT study he was kind enough to prepare a list of "skeptical" blog comments about the HBOT study. Several of the comments are at Autism Street and LB/RB, two Autism Hub blogs. You can tell by the titles that these comments are not going to be balanced or objective assessments of the HBOT study:

"Mild HBOT For Autism - A Brief Skeptical Guide


March 29, 2009 by Do'C Printer-Friendly Version Printer-Friendly Version


For readers who may be interested in a skeptical perspective with regards to “mild” hyperbaric oxygen therapy for autism, I’ve assembled a short list of links. These are articles that I’ve enjoyed reading, found interesting, or written myself.


In no particular order:


HBOT: Under Pressure
http://photoninthedarkness.com/?p=131


HBOT: Is it just a bunch of hot air?
http://photoninthedarkness.com/?p=127


Hyperbaric Oxygen for Autism
http://www.theness.com/neurologicablog/?p=496


Is there no end to unscientific treatments for autism?
http://www.sciencebasedmedicine.org/?p=249


Mild hyperbaric therapy for autism - Shh!…don’t say it’s expensive
http://leftbrainrightbrain.co.uk/?p=2041


Autism, HBOT, and the new study by Rossignol et al.
http://leftbrainrightbrain.co.uk/?p=1987


When High Does Mean Low: Autism, mHBOT, and Dan Rossignol
http://leftbrainrightbrain.co.uk/?p=686


Does Rossignol et al. show HBOT’s effective?
http://ebdblog.com/2009/03/21/does-rossignol-et-al-show-hbots-effective


Ridiculous Autism Treatment Statements - Part One - ICDRC Website on HBOT
http://www.autismstreet.org/weblog/?p=130


Hyperbarics and Hypotheses
http://www.autismstreet.org/weblog/?p=60


Nitpicking Sloppy Science
http://www.autismstreet.org/weblog/?p=40


Autism HBOT: First Look
http://www.autismstreet.org/weblog/?p=36


Hyperbaric Oxygen as a Treatment for Autism: Let the Buyer Beware
http://autism.about.com/b/2009/03/14/hyperbaric-oxygen-as-a-treatment-for-autism-let-the-buyer-beware.htm


Hyperbaric Oxygen for Autism? Not so fast
http://www.randi.org/site/index.php/swift-blog/492-hyperbaric-oxygen-for-autism-not-so-fast.html


As a parent of a severely autistic boy of 13 I am not prepared, on the basis of this one study, and notwithstanding indications of positive gains by severely autistic children in the study, to seek HBOT treatment for my son. I would want to see further studies done by other researchers, and I am not arrogant enough to believe that I am properly educated or prepared to assess these studies myself.

I will rely upon the information provided by informed, professional commentators like Lopez-Duran and credible, responsible agencies that review these studies. If further studies confirm the benefits suggested in the Rossignol study and if it is recommended by credible sources as an evidence based treatment then I would consult my son's pediatrician and consider HBOT treatment option for him. In the meantime though I will continue with ABA for my son which has helped him in so many ways and which has a solid evidentiary basis and overwhelming professional support for its safety and effectiveness. And I will give no weight to the Autism Hub and Neurodiversity commentators who are ideologically opposed to the development of effective treatments and cures for autism. Theirs is an ideological, not an evidence based, opposition to all possible autism treatments.




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Autism Smearing on Autism Street, Yes Virginia (Do'C) Conspiracies Do Exist


Autism Street is not a blog I recommend to parents seeking balanced, objective information about the realities of autism cause, cure or treatment.

"Autism" Street is a member of the "Autism" Hub, a group of blogs which embrace the concept that autistic disorder, a neurological disorder, is actually a blessing to be celebrated. It has an ideological approach to discussion of autism issues and can be snide and nasty to those who disagree with the Autism Street views of autism.

Proponents of the various vaccine/autism theories are often targets on Autism Street. Rumors that members of Generation Rescue were to appear on CNN's Larry King prompted Autism Street's owner Do'C into a full scale tizzy and with unabashed glee Doc immediately set out to smear the anticipated guests, thereby pre-emptively dismissing what they might have to say, by painting them as "nutjobs" in his December 20 comment The Lure Of Conspiracy.


The tool used by Do'C, in his smearing of Generation Rescue, was an article about the attraction of conspiracy theories, The Lure of Conspiracy Theories, by Dr. Patrick Leman. Apparently Dr. Leman is conducting research into a mindset or type of reasoning which characterizes conspiracy adherents for whom conspiracies exude a seductive appeal. On this flimsy basis Do'C suggests that Larry King ask the anticipated guests "a real question":

“What would you say to those people who might refer to you as conspiracy theorist nutjobs with your claims that vaccines cause autism and that the government is covering it all up?”

Ah, now I see Do'C. Anyone who suggests that governments might cover up health hazards is a "nutjob" right? Thanks Do'C, now everyone can stop worrying. Unfortunately, in the real world, outside the brick walls of DoC's Autism Street ideology, conspiracies actually do exist and governments have in fact covered up, or failed to disclose, serious health risks.

In Canada our Competition Act, Criminal Code, National Defence Act and Security of Information Act all contain sections setting out offences described as conspiracies. It is my understanding that in the United States similar prohibitions against conspiracies exist, including in the RICO Act. These conspiracy sections, and other sections dealing with fraud, do not exist because of the whims of legislatures. They exist because fraud and conspiracy are, unfortunately, part of the fabric of criminal activity in any society.

Here in the Province of New Brunswick our people were shocked by the charging, trial and conviction of several prominent directors of a public hospital on multiple counts of defrauding a hospital corporation of funds. One of the directors involved in R. v Stymiest was, until his conviction, a sitting Provincial Court judge. In the sentencing decision Mr. Justice Stephen J. McNally stated at paragraphs 14 and 15:

[14] It seems clear that detection of the frauds was also avoided for so long due to the high professional and social status enjoyed by the perpetrators of the frauds. Mr. Stymiest was a sitting Provincial Court judge while the other accused were senior executives of the hospital who were well respected and thought of highly in the hospital and larger community of the Miramichi. Mr. Tucker was the president and Chief Executive Officer of the hospital. He was described as a hard driving manager who was able to get things done. Both Mr. Stymiest and Mr. Tucker were strong willed and imposing personalities which would no doubt cause the average person to think twice before suggesting any improper or even questionable conduct on their part.

[15] Fortunately, good people often rise well above the “average” and due to the tenacity and courage of a few volunteer members of the board who persisted in asking questions and demanding answers, despite the defendants’ positions and responses to the questions; the frauds were eventually investigated and criminal charges instituted.


But Do'C already knows that conspiracies do in fact exist in the real world. Surely he has heard of ENRON? Maybe Do'C is too busy smearing Generation Rescue to have stayed abreast of the news of Bernard L. Maddof's world wide Ponzi scheme?

For DoC's information the Tobacco Industry has been the target of many conspiracy investigations, charges and some convictions:

The defendants in the case were:


* Philip Morris Companies (now Altria)
* R.J. Reynolds Tobacco Company (RJR), now Reynolds American
* Brown & Williamson Tobacco Corporation (BW), now part of Reynolds American
* Lorillard Tobacco Company
* The Liggett Group
* American Tobacco (now part of Reynolds American)
* British American Tobacco Industries (BATCo)
* The Council for Tobacco Research (CTR)
* The Tobacco Institute, Inc.


Specifically, the Department of Justice (DOJ) alleged that the cigarette industry has purposely and fraudulently misled the public about the risks and dangers of cigarette smoking. The government alleged that "the Defendants have engaged in and executed – and continue to engage in and execute – a massive 50-year scheme to defraud the public, including consumers of cigarettes, in violation of RICO". [Taken from DOJ Final Proposed Findings of Fact (FPFF), Executive Summary, page 1.]

....

Conviction

After 6 years of litigation, 9 months of trial, hundreds of depositions and thousands of exhibits, on August 17, 2006 U.S. District Court Judge Gladys Kessler ruled that the Government had proven its case and found that the tobacco company defendants have violated the Racketeer Influenced Corrupt Organizations Act (RICO).

Final Findings

Based on the evidence presented in the case, Judge Kessler ruled that:

* Defendants knew for fifty years or more that cigarette smoking caused disease, but repeatedly denied that smoking caused adverse health effects. Defendants publicly distorted and minimized the hazards of smoking for decades.

* Defendants concealed and suppressed research data and other evidence showing nicotine is addictive, and withheld information about their internal research on addiction, from the American public, the government, and the public health community, including the United States Surgeon General. The Defendants acted this way to maintain profits by keeping people smoking and attracting new consumers, to avoid liability, and prevent regulation of the industry.

* Defendants falsely denied that they can and do control the level of nicotine delivered to smokers to create and sustain addiction.

* Defendants falsely marketed and promoted low tar/"light" cigarettes as less harmful than "full flavor" cigarettes to keep people smoking and sustain corporate revenues.

* From the 1950s to the present, different tobacco companies using different methods have intentionally marketed cigarettes to young people under the age of 21 in order to recruit "replacement smokers" who would ensure the future economic viability of the Tobacco Industry.

* Defendants publicly denied, while internally acknowledging, that secondhand tobacco smoke is hazardous to nonsmokers.

* At various times, Defendants attempted to, and did suppress and conceal scientific research and destroy documents relevant to their public and litigation positions.

The existence of other conspiracies does not prove a claim that government and industry have colluded and conspired to conceal evidence or information showing that vaccines, or vaccine ingredients, cause or contribute to autism cases. Personally I am not convinced that such a case of conspiracy has been established. I also have no doubt though, on the evidence, that public health authorities have in the past discouraged investigation of a possible vaccine/autism connection.

The fact that some people allege the existence of conspiracies does not, as DoC insinuates, mean that they are "nutjobs" whose views should be dismissed. Mr. Justice McNally's comments in R. v Stymiest are worth remembering when contemplating DoC's smear job of the Generation Rescue people and their beliefs. They are not "nutjobs" as DoC clearly insinuates. They are good people rising well above the "average".

They are trying, against the powerful weight of public authority, and sometimes cheap, nasty internet commentary, to right what they believe to be a wrong. And time might well prove them right.




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What Does "Positive" Autism Awareness Mean?

What exactly does "positive" autism awareness mean? Is that concept consistent with "realistic" autism awareness?

I have already expressed my concern that the realities and challenges faced by the severely autistic may not be reflected on Autism twitter Day next Tuesday, December 16. Bonnie/AutismFamily, the force behind Autism Twitter Day, responded to those concerns by reference to her own child.

Still I can't help but wonder when I see the adjective "positive" used to describe autism awareness whether it is an attempt to censor the discussion, to promote an unrealistic, feel good picture of autism like that promoted on Autism Vox, LeftBrain/Right Brain and other "Autism" Hub, neurodiversity sites.





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Severe Autism: Mandy's Blog

I recommend that anyone interested in the realities facing severely autistic persons avoid mainstream media organizations and most internet blog sites. These sources,eg. CNN, CBC, The New Yorker, Autism Hub sites, tend to focus on the realities and agendas, of an alleged autism rights movement, consisting of a few high profile high functioning persons and persons with Aspergers. One internet exception worth visiting is a blog called Mandy's Blog at mencap.org.uk.

The alleged autistic rights movement actually suppresses the rights of the more severely autistic persons, badly in need of treatment, cure and assistance at all stages of life, by asserting that autism is simply a natural variation, that Neurotypicals should not seek to cure autistic persons, even their own autistic children, even when those children are actually much more severely autistic than the media posing "autistic rights" leaders.

The autism rights leaders like to publicly identify autism with very intelligent historical figures and frown upon the very mention of severely autistic persons; a reality they deny. Even discussion of autism, a spectrum of disorders, in terms of degrees of severity is attacked. After all it is difficult to claim the right to speak on behalf of a large group of people if in fact you faced very different challenges and they have never asked you to speak on their behalf. Better to pretend that the differences do not exist.

The introduction to Mandy's Blog makes it clear that this is not the usual joy of autism stuff where the mere mention of the severely autistic is frowned upon:

Charlotte is my daughter. She is 12 years old, blonde and pretty (although I am biased of course) and has severe autism.

When I read Mandy's description of her severely autistic 12 year old daughter I am struck by the similarities with my severely autistic 12 year old son, her echolalia, her bubbly personality, and her entertainement choices are all strikingly similar to my son Conor. Mandy speaks in a straight forward, realistic manner about the challenges facing her and her daughter.

I encourage everyone interested in learning about the challenges facing those with severe autism and their family members to visit Mandy's blog.




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Some Real Autism Hubs

One of the great misnomers of the autism blogosphere is the site called "Autism Hub". The AH is anything but a hub for autism blogging. Fortunately the past year has seen the development of some true autism hubs in the blogosphere.

While pretending to be a center for "the very best in Autism Blogging" the Autism Hub is really a gathering place and blog feed service for a narrower slice of autism reality, the anti-autism cure adherents of "Neurodiversity" which claims that autism disorders are not disorders at all, just natural variations of human existence. There are two primary categories of autism bloggers at the AH - High functioning autistics and persons with Aspergers and a few parents who subscribe to Neurodiversity ideology.

Lower functioning autistic persons with cognitive disabilities are rarely mentioned at the "Autism" Hub. They are outcasts at the AH where any mention of the harsher realities facing the more severely autistic is strictly verboten. Mention of possible environmental causes of autism is also frowned upon by the Neurodiversity leaders of the AH who have gone so far as to insinuate that free discussion of environmental causes of autism and of the harsher realities facing lower functioning autistic persons have contributed to horrific tragedies of parents who have murdered their autistic children.

The past year though has seen the development of some true autism hubs in the blogsophere, sites that aggregate or post blogs reflecting the entire spectrum of autism perspectives. On these sites even autism reality oriented blogs surface. One site in particular which fills the need for a real autism hub in the blogosphere is The Autism Retort which states that it includes Autism blogs of all flavors. Those you agree with, those you don't.

The Autism Retort lives up to the claim by including reality oriented blogs like Facing Autism in New Brunswick alongside ideological blogs like Autism Vox and the Autism Hub itself. Even John Best's Hating Autism (condemned by Autism Hub Bloggers) is listed (although misnamed as Halting Autism). BlogNetNews.com/Autism also presents a wide range of autism blogs. A recent start up is Top Autism Sites which includes both reality based Autism blogs and ideologically oriented neurodiversity blogs .

In all fairness to the Autism Hub although it does not represent the spectrum of autism perspectives in the blogosphere it is a convenient place to check out Neurodiversity Blogs. I drop into the AH periodically and I sincerely thank the organizers for providing this service.





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The CDC and the Autism Research Paradigm Shift

David Kirby has published, at the Age of Autism, a letter from an official in the Office of CDC Director Dr. Julie Gerberding in which it is stated that:

While it is important to understand if autism is affecting any group of children disproportionately, it is also important to keep in mind that there are likely multiple causes of the autism spectrum of disorders. Most scientists agree that today's research will show that a person's genetic profile may make them more or less susceptible to ASDs as a result of any number of factors such as infections, the physical environment, chemical exposures, or psychosocial components.

It is not clear from Mr. Kirby's article who the official in the office of Dr. Gerberding was that sent the email or whether that official's view represents the official view of the CDC. But it seems consistent with the autism research paradigm shift proposed by the University of Minnesota:

Autism research is poised for another paradigm shift, from an irreversible condition to a treatable disease. In the revolutionary paradigm, autism is not a rare disorder with a constant rate but frequent condition with a rising incidence. It is a combination of environmental influence and genetic vulnerabilities. It is both preventable and treatable, not by any one method but by a combination of behavioral and biomedical approaches. Autistic kids are not defective, they are sick but otherwise normal kids, and thus, recoverable.

Creating a premier center for effective treatment of autism is not as simple as adding a new wing on a hospital, purchasing the latest medical technology or creating another diagnostic center.

What is needed is a revolutionary clinical effort premised on the paradigm that autism may well be a treatable and preventable disease.

The Autism Knowledge Revolution has been marked by dramatic advances in our understanding of the structural and genetic bases of autism. The autism research paradigm shift, a shift toward investigation of the interaction of genetic susceptibility and environmental triggers may well speed the pace of that knowledge revolution.

Reactionary bloggers at the Autism Hub and Neurodiversity ideological movements will not be happy with the autism research paradigm shift but the maturing of scientific inquiry into autism, the movement past official defensiveness, may someday result in more effective treatment and cures. And those are autism realities that will be happily embraced by most parents of autistic children.




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Severe Autism Reality - Adult Autism Care Crisis for Maine Family

Caring for severely autistic persons is not easy and it does not get any easier as autistic children become adults and parents and other family members also age. In A Crisis in Caring Meg Haskell of the Bangor Daily News has an excellent report on Jennie Segerson, a 29 year old severely autistic Maine woman who has been living with her mother and family members who obviously love her very much. Jennie's mother is now 69, blind as a result of diabetes, and the private care agency workers who come to her home are poorly trained and motivated. Jennie herself can become aggressive and violent to herself and others. Her mother now faces the likelihood of permanent separation from Jennie because she can no longer care for her safely.

As the father of a severely autistic boy in the neighboring Canadian province of New Brunswick this story really hit me. Ms Haskell pulls no punches telling the truth about Jennie's severe autism challenges. It is not the kind of information you are likely to find reading about autism on Neurodiversity blog sites such as those of the so called "Autism" Hub bloggers usually written by, or about, high functioning autistics or persons with Aspergers. But while Ms Haskell describes Jennie's severe autism realities candidly she also conveys the deep love Jennie's mother has for her and the anguish she feels at the prospect of losing her daughter.

On a lighter note I had to laugh when reading about Jennie's excitement as she waited for her brother in law to arrive in his silver truck to take Jennie to her day care program:

""Silver truck!" she exclaimed, her shy smile breaking into a wide grin of delight and anticipation. "Silver truck!" She clutched her battered doll, Silver, in glee, waiting for the sound of the pickup pulling into the driveway."

I thought of Conor as I read that paragraph and his requests for "silver car" as a way of summoning Dad home from work ... in my silver Camry.

Autism Media Breakthrough

A major autism media breakthrough has occurred with the publication of Julie Deardorff's blog on several sites including the Chicago Tribune and the BradentonHerald.com. In Autism's road to recovery full of questions, few answers Ms Deardorff comments on debate over whether autistic children should be "recovered". She presents the perspective of Alex Plank, a high functioning person with Aspergers, attending college, and otherwise functioning very well in society. But the breakthough occurs when Ms Deardorff also presents the perspective of David Royko who tells the story of his autistic son Ben, who, at age 14, is not toilet trained and will never live independently:

Plank has a point, but he also is a functioning member of society. A film and video major at George Mason University in Virginia, Plank speaks on neurodiversity at conferences. He has a girlfriend and friends. His interests include computers, writing and acting.

Autism, however, encompasses a range of individuals, from quirky, socially awkward geniuses to those such as Ben Royko, who is still not completely toilet trained at 14, has to live in a residential school setting, has very limited functional language and will never be able to live independently.


It is rare for an article, column or blog, whether published in hard copy or online, to mention and describe a severely autistic person and the grim realities some of them face.

Full marks to Ms Deardorff, the Chicago Tribune, and other sites which publish her blog for daring to consider and discuss the invisible autistics, the severely autistic, who do not get discussed by Neurodiversity bloggers at the "Autism" Hub and are not invited, and re-invited, to appear on CNN and other feel good, ratings driven, news sources.

Autism Mom Jenny McCarthy On Chicago Sun-Times Ten Women Who Inspired in 07 List


In a move that will undoubtedly provoke angry outbursts from Autism Hub bloggers the Chicago Sun-Times has named Autism Mom and Celebrity Autism Activist Jenny McCarthy as one of the The ten women who inspired us in '07. Paige Wiser and Lisa Donovan of the Sun-Times noted that:

Jenny McCarthy

The zany blond struck a serious note this year, going public with her son's autism diagnosis. Her book Louder Than Words: A Mother's Journey in Healing Autism was honest, informative, down-to-earth and sometimes painful. McCarthy took a gamble, going public with her problems and shattering her fantasy image. Mothers everywhere thank her.

I do not subscribe to Ms McCarthy's views about autism causes and treatments but I try to keep an open mind and science is not, despite the views of neurodiversity bloggers to the contrary, a process by which possibilities are closed forever. New evidence, new studies may well support her anecdotal evidence about autism cause and treatment.

I do admire Ms McCarthy for speaking out about her son's condition and her efforts to help him. She must have known that as a beautiful actress she would be subjected to scorn and ridicule in some corners for presuming to enter the public debate on issues that affect her son so profoundly. But she did it anyway and encouraged many other parents in doing so. And she probably brought more attention to autism disorders and autism issues than the entirety of the Autism Hub's neurodiversity bloggers will ever do in their lifetimes.

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