Autism Rising? Dr. Eric Fombonne Says Yes It Is

Despite the recent figures from the CDC revising autism prevalence rates upward from 1 in 150 to 1 in 110 die hard deniers of the existence of an autism epidemic refuse to acknowledge the obvious.  One of the most stubborn deniers is Kev Leitch at LBRB a Neurodiversity driven "autism" blog. 

In a recent lbrb post  denying the reality of the increasing rates of autism disorders Kev clings to the 1994 diagnostic changes and to social and ascertainment factors.  He does so even though Dr. Tom Insel, head of the IACC, has recently stated that studies can only attribute slightly less than 50% of the startling rates of increases to such diagnostic and ascertainment factors. The onus, according to Dr. Insel, is on those who would deny that autism is actually increasing to make their case.

Kev's diagnostic and ascertainment factors accounting for less than 50% of the autism increases what is left? Well Kev drops a few names without much explanation.  One of the names he drops, somewhat curiously is Dr. Eric Fombonne.   What makes Kev's reference to Dr. Fombonne so curious is that the good Doctor has previously indicated that autism actually is rising and quite dramatically.  He did so in the context of "debunking" claims that the mercury based preservative thimerosal used in vaccines (including recently in the H1N1 vaccines) does not cause autism disorders (as reported by Scripp news) :

"One of the main pieces of evidence against the vaccine theory, Minshew said, is that thimerosal has been banned from most childhood vaccines in America since 2001, and yet reported autism rates have continued to increase.Dr. Eric Fombonne, an autism researcher at McGill University in Montreal, has an even more telling example of that. In Quebec, children who got vaccines from 1987 to 1991 had about half as much mercury exposure as those in the United States; from 1992 to 1995, they had the same amount; and from 1996 on they had no exposure at all because mercury preservatives were removed. Yet the autism rates in Quebec increased steadily through that entire period, and actually went up faster after the mercury was eliminated."

I do not know if Dr. Fombonne is correct in stating that mercury was removed from all Quebec vaccines or not.  What is relevant for Kev's argument  who cites Dr. Fombonne as an authority for the view that autism is not really rising is the fact that well ... Dr. Fombonne has argued exactly the opposite in trying to prove that mercury based thimerosal in children's vaccines has been exonerated as a cause of autism disorders.   If the increase in autism diagnoses relied on by Dr. Fombonne in defending thimerosal was not a real increase, if it was due entirely to diagnostic and social factors, then Dr. Fombonne's thimerosal defence would be destroyed.

The factors cited by Kev Leitch and other autism epidemic deniers do not account for more than 50% of the autism epidemic. Name dropping of experts like Dr. Fombonne  does not change that fact. Especially when they themselves have publicly relied on real autism increases in arguing against thimerosal as a factor causing autism disorders.

Autism is rising and it is long past time that we started doing the research to find out why.

autism

Was the H1N1 a Fake Pandemic? A Council of Europe Motion to Investigate Drug Sellers Influence

In WHO to Clarify H1N1 Data After False Pandemic Claim Bloomberg  reports that "The Parliamentary Assembly of the Council of Europe plans to debate the theme “Faked pandemics: a threat to health” at a plenary session in Strasbourg, France" next week.  

Not to quibble too much with "B"but the debate is not just debate of a theme in an academic or abstract sense.  It is  debate on an actual motion which calls on the member states of the Council of Europe to conduct investigation of the influence of "drug makers" in defining and declaring pandemics.

I am not, and do not pretend to be, prescient.  I do not know what the outcome of the debate will be.  Given the emphasis placed by governments around the world on vaccines as public health tools and the active and vigorous discouragement of any debate of any safety concerns around vaccines though I would not expect to see the Council of Europe pass the motion and conduct any real investigations.  Nor do I expect the Council of Europe to find that the H1N1 Pandemic was overblown.  Of course I have been wrong before.  

As for whether it was reasonably forseeable that the  "pandemic" would not be as harsh as predicted by public health authorities there were credible skeptics who questioned the pandemic rhetoric many months ago.  As with any questioning of vaccine related issues skeptics and critics of public health authorities' "consensus" on these issues were largely ignored, ridiculed or demonized.  

As for whether "drug makers" or pharmaceuticals have too  much influence over public health authority decisions concerning pandemics and other public health issues I will leave that question to someone truly knowledgeable on the subject ... someone like Dr. Julie Gerberding who led the CDC from 2002 to 2009 and who will now lead Merck's vaccine division:

 "WASHINGTON, Dec 21 (Reuters) - Dr. Julie Gerberding, former director of the U.S. Centers for Disease Control and Prevention, was named president of Merck & Co Inc's (MRK.N) vaccine division, the company said on Monday.... She may be charged with reigniting flagging sales of Merck's Gardasil vaccine to prevent cervical cancer by protecting against human papillomavirus or HPV. After an encouraging launch Gardasil sales have been falling and were down 22 percent in the third quarter at $311 million." [Bold emphasis added - HLD]

One thing I would like to see emerge from the H1N1 Pandemic, whether the Pandemic label was justified or not, are studies of the impact on the health, including any negative health  effects, if any, of the many people vaccinated with H1N1 shots.  In some countries adjuvants and other ingredients, including thimerosal, were included in the H1N1 shots.  

One of the high priority  target groups to receive H1N1 shots was pregnant women. Some credible public health authorities, including Dr. Bernadine Healy, have pointed out that thimerosal,  a mercury based preservative, crosses the placenta.  It would seem appropriate to me to keep data on the health effects of the H1N1 vaccine on  these women and the children who received the H1N1 shots in utero. 

It seems to this humble layperson that the developmental histories of children born during this time period from pregnant women who (1) did not receive the H1N1 shot (2) received the H1N1 shot without thimerosal, (3) received the H1N1 shot without adjuvants should be compared.   As someone with an interest in autism disorders and what causes them I am interested in particular in seeing a comparison of  autism rates 2+ years from now of children whose mothers were carrying them when they  received H1N1 shots containing thimerosal  and children whose mothers, while carrying them, received H1NH1 vaccine shots without thimerosal.

No I am not expecting such studies to be done and yes I do expect to be ignored, ridiculed or demonized for making these suggestions.  But I am making them anyway.

autism

An Important Autism Resource: Interventions for Autism Spectrum Disorders STATE OF THE EVIDENCE October 2009

I encourage anyone interested in autism disorders, particularly parents of children newly diagnosed with an autism disorder, to read Interventions for Autism Spectrum Disorders STATE OF THE EVIDENCE October 2009.  It is a thorough,  comprehensive review, as the title indicates, of the State of the Evidence relating to autism interventions published by the  State of Maine Departments of Health and Human Services and  Department of Education. 

Unlike many reviews of autism interventions it provides a detailed assessment and "grading"  of the  evidence in support of the various autism interventions.  STATE OF THE EVIDENCE in many ways is an update and further refinement of another effort by our good neighbors in Maine  the  excellent Report of the MADSEC Autism Task Force (2000).  

I have always believed that an evidence based approach to assessing the efficiency of autism interventions is of fundamental importance to finding the best ways to help my son Conor grow and overcome to the fullest possible extent the deficits that accompany his severe autistic disorder.  The MADSEC report pointed clearly to ABA as the most evidence based autism intervention.  While Conor never had the opportunity to benefit from Intensive Early Behavior Intervention he has benefited from ABA. 

I do not ask any other parent to take my word on what benefits ABA might or might not be able to bring to their child with autism.  I do encourage them to read credible sources about autism interventions. In the past the MADSEC Autism Task Force was the best report that I read providing a clear, well organized summary and assessment of the evidence in support of autism interventions.  The STATE OF THE EVIDENCE is an important new resource that follows the same helpful pattern.

autism

We Know Conor Will Stop Growing ... Some Day

We know Conor will stop growing ... some day.  Mom is 5' 7".  Even with Dad's ... er ... Conor's fine winter hat on you can see Mom is being left behind in the height department.  Next month Conor turns 14.  That's when kids are all finished growing ... right?

autism

Denials Do Not Explain Autism Epidemic, Environmental Factors Must Be Researched

If any disease or disorder saw startling increases from 1 in 500 to 1 in 110  in just over a decade it would be taken seriously. Unless of course the disorder in question is autism where a significant number of professionals  are joined by Neurodiversity ideologues in denying  the existence of an autism epidemic. The deniers hold religiously to their beliefs without an explanation for much of the startling increase in autism diagnoses.

The autism epidemic deniers rely heavily on the 1994 change in autism diagnostic criteria and definitions, diagnostic substitution, increased autism awareness and other ascertainment factors. While there is no dispute that these factors play substantial roles in accounting for the upswing in autism diagnoses they only account for approximately 50% of the increase in autism diagnoses, leaving 50% of the increase unexplained. Given the startling rise in autism diagnoses 50% of that increase represents in itself a startling increase. Yet the deniers blithely assure the world that there is no real increase in autism diagnoses.

The view that 50% of the increase in autism diagnoses is unexplained by diagnostic change, substitution and ascertainment factors  can not be pinned on  a celebrity actress or holistic doctor frowned upon by the "scientific community". Doctors Novella and Gorski and Neurodiversity ideologue Kev Leitch can not use "scientific" terms like "woo" and "quack" to dismiss  the opinions of Dr. Thomas Insel, director of the Interagency Autism Coordinating Committee, who  has stated in an interview with journalist David Kirby that 50% of the autism diagnoses increases reported in the California study is unexplained by  diagnostic change and ascertainment factors:

"It looks like about 24 percent of the California increase can be attributed to something like a change in diagnosis criteria. They are beginning to use multiple diagnoses. So that children before, who were listed simply as mentally retarded rather than autism - but they had both - are now logged in with both. But that really caps out at around 24 percent. There’s probably another piece of this, which globally could be attributed to ascertainment. But that caps out at around 16 percent, or something like that. And when you put all of that together, you are still well below explaining 50 percent of the increase.

So what does that mean? It means that, as far as I can tell, the burden of proof is upon anybody who feels that there is NOT a real increase here in the number of kids affected. Because all of the evidence we have up until now says that, well there are what we could call – I wouldn’t call them ‘trivial’ factors – but they are factors that are not related to incidence, but would be simply related to prevalence, like ascertainment. But they don’t really explain away this huge increase.

This tells you that, you really have to take this very seriously. From everything they are looking at, this is not something that can be explained away by methodology, by diagnosis. Some piece of it can, but the whole thing can’t.""      [Bold highlighting added. HLD]

Having rejected the diagnostic and ascertainment factors as complete explanations for the increases in autism diagnoses Dr. Insel then went on to reject the theoretical basis of autism epidemic denial, the assumption that autism disorders result entirely from genetic factors and the fervent belief that environmental factors do not play a role in causing autism disorders:

"I don’t think anybody is arguing that it is 100-percent genetic. I mean, I think that there are just a lot of questions that this raises. And I don’t think in those terms, exactly, that it’s either genetic or it’s environmental. From my perspective, it’s almost always going to be both. And the only question is: How do you nail down this interaction, how do you go after it?

....

There is no question that there has got to be an environmental component here. The problem for us has been trying to find the right way to get our hands around it, and to identify what that is most likely related to  ...     in the last few months, or maybe year, we’ve begun to develop the tools that will allow us to get at this. And these tools are from this whole emerging field of epigenetics, or epigenomics.   And in this case you are not looking at genetic sequence - which is what we’ve been doing for the last decade - but you’re looking at how the DNA is bound up with all kinds of proteins. That is largely affected by experience, or by environment. Some of it is probably hardwired, but a lot of it has to do with exposures, particularly early in development but even, as we are learning, even after birth

So what we are really excited about here, I think, is to be able to use these new tools. And what has only happened in the last month or two is the first whole genome epigenetics effort, where we have been able to say, ‘We can map this entire aspect of genomic biology, and it tells us what someone’s exposure history might have been.’ It shows you effectively, or we are hoping it will show us, where the scars might be from early exposures."

The near 100% focus on genetic based autism research over the last decade, referenced by Dr. Insel, was identified by Terersa Binstock in 1999.  That focus has resulted in little research of the environmental factors involved in causing autism disorders.  The failure to study possible environmental factors in causing autism has allowed autism epidemic deniers to claim that there is no evidence of environmental factors in causing autism, that autism is entirely genetic and that there is therefore no autism epidemic since a purely genetic disorder would not show dramatic increases in such a short period of time.

Given the recent CDC data, and given the emerging scientific view reflected in IACC Director Insel's statements in the Kirby interview it appears time is now running out for the autism epidemic deniers. 

autism

Autism Insanity: Kev Leitch Makes It Up As He Goes

UPDATES:


(1) Kev Leitch has now commented on this post but instead of either backing up his claim or admitting error he sticks to his original false statement. HLD.  


(2) Since the original update KL has twice submitted posts (which I rejected as off topic)  in which he fails to acknowledge that he wrongfully included me in the highlighted quote below which I took directly from his blog site. Instead, as per past practice, Mr. Leitch changes the topic, fails to admit his error and fails to substantiate his false claim. HLD   

The Autism Insanity comment I posted today provoked a knee jerk reaction from ... Kev Leitch at LBRB.  That is not a surprise. Kev fits every fact, news item or commentary into his Neurodiversity ideological blender and jumps quickly in an effort to discredit any contrary views.  His knee jerk post this time though resorted to an outright false statement.  Kev states that I am claiming that:

"Both Dachel and Harold (and David Kirby come to that) are claiming that epidemiology can be ursurped by individual experience"

The fact is that nothing in my post makes that claim.  Kev simply and falsely attributed that claim to me.

If anyone can point to where I said that in my post I would be happy to acknowledge error on my part.

Since Kev obviously reads this blog faithfully I encourage him to man up and point to where I claimed in my comment that "epidemiology can be usurped by individual experience".  If  Kev can not come forward and either point to that claim in my comment, or admit that his attribution to me of that comment is false,  then I would caution anyone about taking any of his comments too seriously.

autism

Autism Insanity: The It's Gotta Be Genetic Model of Autism

"It's crazy that in this debate, we're still debating whether autism numbers are actually going up or not, which is insanity to me. It's people desperately clinging to this belief that autism is genetic, that it's always been with us at this rate, that we're just better at counting it, better at diagnosing it."

David Kirby, 'Evidence of Harm' revisited, Part 2, The Bloomington Alternative, January 10, 2010

Kirby has hit the nail on the head with this remark from his interview with Steven Higgs at the Bloomington Alternative. Teresa Binstock identified the "It's gotta be genetic" mindset of understanding autism and funding autism research over a decade ago and little has changed since then.  The failure to challenge an entrenched almost cult like belief that autism is genetic, it just has to be genetic, has cost another generation years of potentially productive autism research and possible treatments and cures. The same "autism is genetic" cult followers, having held back environmentally focused autism research,  then point to the absence of scientific study results identifying environmental factors in causing autism as proof that autism is genetic. Sounds like insanity to me.

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Autism in Canada - Harper Government Has Promised Little and Has Done Even Less

The following letter was sent from Autism Canada to Canadian Members of Parliament.  The Conservative Government promised very little help for autistic children and adults. Staying true to form it did not even deliver on the little that it did promise.

The  CIHR national autism symposium which Autism Canada refers to as a "consensus" symposium was declared by the CIHR  to involve consultations with the autism community. In truth the CIHR National Autism Symposium was  a sham which excluded autism advocates including me (1), (2), (3), (4), (5).

My name, as a father who had been active in advocating for autism specific  preschool and school services in New Brunswick was put forward twice by reputable autism spokespersons in New Brunswick and was rejected.  Other advocates active in seeking government funded evidence based interventions for autistic children were also excluded. Meanwhile well known anti-ABA, anti-autism cure figures were invited to attend.

Autism Canada is understandably diplomatic in dealing with an arrogant government that simply prorogues, "suspends", the operation of our federal Parliament when it suits its purposes to do so.  The reality though is that the Harper government has promised little and done less to help autistic children and adults. Meanwhile autistic children who could have been helped have languished without treatment across Canada.  That is Autism Reality in Harper's Canada.

Where I disagree with Autism Canada is in its call for a national autism division within Public Health Canada. Such an organization would amount to just another government department that would twiddle its thumbs, agonize endlessly over autism and do nothing to help autistic children and adults. We already know what has to be done.

Parents across Canada have advocated tirelessly for government funded autism intervention for their children at the preschool and school levels. The federal government could have acted by cooperating with provincial governments most of whom badly need funding for autism interventions. There is also a pressing need for more funds to provide for adult care facilities across Canada. Establishing a separate autism department will only create further delay and result in bureaucratic autism kings who will still refuse to listen to parents seeking to help their autistic children just as the CIHR and the Government of Canada have done for so long.

Autism Canada is trying diplomacy ... again.  Hopefully it will have some tiny impact on Canada's ProRogue Prime Minister.  Regardless, I thank Autism Canada for trying.

The Autism Canada letter follows:

As a Canadian Charitable Autism Organization and member of the Canadian ASD (Autism Spectrum Disorder) Alliance, Autism Canada Foundation feels a great responsibility to ensure the disorder is properly cared for across our country.  Our organization is requesting the implementation of a division for autism within the Public Health Agency of Canada (PHAC) responsible for surveillance, epidemiology and policy, specifically a National Autism Strategy.  

This would not be unlike the way in which other disorders are currently addressed within PHAC.  

While we appreciate the Honourable Lawrence Cannon’s response and the numerous federal initiatives catalogued therein, we believe these programs fall short of truly addressing the issues of concern to the millions of Canadians affected by autism.  In examining the government’s initiatives to date, we still have no national surveillance of autism or national autism strategy implemented.  Our concerns are:  

• The $1M over five years for a National Chair in Autism Research and Interventions at Simon Fraser University has not been fulfilled.  Unfortunately, these funds were not sufficient to attract candidates for the position.
• The $50K to translate the Canadian Autism Intervention Research Network website plus the additional $75K to enhance content is positive, but fails to inform parents on what they can do to help their children now.
• While $27.1M has been spent on autism-related research since 2000, we need this figure to increase dramatically and for funds to be directed to autism-specific research that will have the broadest impact and follow clues provided by treatments currently working in children.
• The Canadian Institute of Health Research national symposium was an invitation-only consensus meeting that had little or no impact on Canadians with an ASD.
• While PHAC has consulted the autism community on ASD surveillance and is expanding Queens University’s surveillance system, we are still without a national autism surveillance system within our public health structure.    

We recognize the reasoning behind the research and initiatives that have taken place to date.  In fact, we applaud and support many of the steps that have been taken thus far.  However, the measures that have been implemented to this point are simply the first steps to tackle a major national issue.  Our concern is that the seriousness with which government officials claim to be approaching the matter is being undermined by the relatively minimal measures that have been employed to date.    

The importance of creating a division for autism within PHAC, which would facilitate the establishment of National Surveillance and a National Autism Strategy, is twofold:  

• It would create a position of accountability and responsibility for overseeing the disease, which currently affects 1 in 150 children (United States Center for Disease Control).
• It would give the nation a better understanding of the magnitude of the crisis we are facing so that strategic planning and appropriate interventions may be implemented.    

Our organization works hard to affect change and support families in the autism community, but the struggle to acknowledge and manage the pervasiveness of ASD nationwide must begin at the federal level.  With the return of Parliament, we implore you to reconsider the seriousness of the ASD epidemic that is afflicting millions of Canadians.  The incidence of ASD has been increasing in the United States and there is no reason to suspect it is any different in Canada.  The key to combating the disease and suppressing its exponential growth is to take swift and substantial action as outlined above.  

Autism Canada’s goal is to educate so that we might make the best decisions for all Canadians.  We look forward to working collaboratively with the Canadian ASD Alliance and the Public Health Agency of Canada to initiate a process of facing this important health issue.  

Sincerely,

Cynthia Zahoruk

President

Autism Canada

autism

In Future Will Autism Spectrum Disorders Be Referred To As Brain Connectivity Disorders?

Another study has been published, the results of which, according to Science Centric,adds to evidence that autism is a brain 'connectivity' disorder. I had previously commented on brain connectivity in April 2009 noting that a study at that time was supportive of a previous,  2006,  study linking autism disorders to brain connectivity issues: Autism's Four C's: Cerebellum, Connectivity, Coordination, Communication.  If further study results indicate that autism deficits arise from brain connectivity disorders will the autism spectrum disorders come to be known as the Brain Connectivity Disorders?  More importantly, if brain connectivity is the biological problem that gives rise to autism disorders will  effective treatments and cures be developed targeting the connectivity issues?

As reported on Science Direct the study's lead researcher Mustafa Sahin, MD, PhD, of Children's Department of Neurology, made statements that hold out some hope that treatments might ultimately result from further brain connectivity research :

"'People have started to look at autism as a developmental disconnection syndrome - there are either too many connections or too few connections between different parts of the brain,' says Sahin. 'In the mouse models, we're seeing an exuberance of connections, consistent with the idea that autism may involve a sensory overload, and/or a lack of filtering of information.'

Sahin hopes that the brain's miswiring can be corrected by drugs targeting the molecular pathways that cause it. The mTOR pathway is emerging as central to various kinds of axon abnormalities, and drugs inhibiting mTOR has already been approved by the FDA. For example, one mTOR inhibitor, rapamycin, is currently used mainly to prevent organ rejection in transplant patients, and Sahin plans to launch a clinical trial of a rapamycin-like drug in approximately 50 patients with TSC later this year, to see if the drug improves neurocognition, autism and seizures."

This is one father of a severely autistic son who is hoping that such research does lead to viable autism treatments and cures.  I want my son to have the opportunity to participate as fully in life as I have done.   Correcting connectivity issues that would enhance his understanding of the world?  Absolutely.

autism

Well Informed Autism Commentary You Should Read: Autism, Empathy and Martin Luther King, Jr. by Lin Wessels

If you are searching the internet looking for commentary about autism by someone who has has real experience with the subject matter on which to base her insights I would recommend you read Autism, Empathy and Martin Luther King, Jr. by Lin Wessels. Lin takes a  shot at some of the many autism myths perpetuated in the media and provides some parental perspective on several common autism myths including the empathy myth which she refutes with her own experiences with her son:

.

 The moment I stepped foot in the room, I knew something was wrong. There he stood; such a sad, long face with tears ready to flow at any given moment. All I need do was ask him what was wrong and flow they did. He not only cried; he sobbed. Big, heartfelt sobs ensued. As is common in autism, his communication is somewhat lacking, let alone the sobbing. We were finally able to piece it together; the second graders had watched, “My Friend Martin,” and he died. My son was heartbroken that anyone would treat others so poorly. He was further saddened that someone evil would dare to kill such a fine person as Martin Luther King, Jr. He was sincerely grief stricken.

I immediately recalled a time when he was but a toddler, not able yet to speak. We didn’t yet know he had autism. Perhaps, he’d not yet been stricken by it. He was watching Shrek. As the Gingerbread Man’s leg was being broken at the order of Lord Farkwad, our sensitive Sam wept. My son does now and has always boasted empathy. 

Regardless of what the alleged experts say I accept completely Lin Wessel's evidence, based on direct observation, based on her experience with her child. I have seen empathy in Conor although I can not point to any incidents as dramatic as Ms Wessel has done. Read her comments at AutismOne if you want to gain some autism insights from some one with actual experience with autism ... from a caring parent.

autism

Conor Stays Warm in His New Winter Hat

Conor tried on Dad's new winter hat and decided it felt real warm and cozy. Did I say Dad's new hat? It looks like the hat has found a new owner.

autism

Autism Outreach Group Excludes Low Functioning, Severely Autistic Persons

A group of persons with autism spectrum disorders has been formed in the Tri-Cities Washington area but membership is for persons with High Functioning Autism and Aspergers disorders. Low functioning, severely autistic persons are not included in the group. In  New group forms for high-functioning autistic Tri-Citians  The News Tribune reports on the founding of the  Three Rivers Autistic Outreach a social group for persons with High Functioning Autism and Aspergers:

""   Ellen, whose autistic diagnosis is pervasive atypical development disorder, is a high school and college graduate and trained as a paralegal.

Meier learned of her Asperger's condition a few years ago when her husband suggested she be tested for autism.

But when Meier and Ellen became acquainted after meeting at an autism picnic, the social connection clicked.

"It's a very isolating condition," said Ellen. But once people with autism who are high-functioning link up socially, their lives have a new dimension.

"We have a unique understanding, we laugh together. We don't notice the twitches. We can just be ourselves," she said.

"Without having people look at you funny," Peters added.

Another reason Peters formed the peer group is that plenty of support can be found for young autistic children, but there isn't much for autistic young adults, particularly high-functioning people.

"The high end (of autism) gets ignored. You can't find others so easily," Peters said.

I do not intend this commentary as a criticism of the members of this group with High Functioning Autism and Aspergers Disorder. To the contrary,  I applaud their common sense and honesty in describing themselves accurately as a group for High Functioning members of the autism spectrum.

I wish the same accuracy, common sense and honesty would be displayed by the brilliant members of the ASAN Board of Directors all of whom are persons with High Functioning Autism and Aspergers.  In the same vein I wish the high powered mainstream media  that dotes on Obama disability appointee Ari Ne'eman would understand that while  Mr. Ne'eman would undoubtedly fit in at gatherings of the Three Rivers Autistic Outreach my son with severe Autistic Disorder  will never be able to function in such a setting.

The DSM re-designers would be well advised to consider a clear demarcation in the DSM V between those with low functioning, severe Autistic Disorder, including the 75-80% who are cognitively impaired, on one side and High Functioning Autism and Aspergers Disorder on the other side.  It is a divide acknowledged openly and honestly by the Three Rivers Autistic Outreach group. It is a divide which exists on, but is not openly acknowledged by .the ASAN "Autistic Self Advocacy Network"  Board of Directors.

autism

Autism Cure? It's About Functioning Not Conformity

One of the blog posts on this site received a number of visits from the Mother of Shrek Site, where Casdok, the author, and mother of a non verbal autistic young man articulated her views on autism acceptance in the context of what she described as a hypothetical autism cure.

In the course of that commentary Caskok asked what is meant by curing autism but she asked the question using the language of the Neurodiversity ideology to which she subscribes, which views autism not as a medical disorder but simply as a "difference". I posted a comment on that site although I don't know, as I  post this comment, whether it will pass moderation so I have reproduced it below in italics following the question asked by the author which I have also posted and  highlighted in blue.

The wording of the question posed by the site's author obviously provides its own answer. The concept of cure as providing the person cured with the ability to understand the world, to communicate better in the world, to function and even function independently in the world is not part of the question as framed by the Neurodiversity embracing Casdok.

Cure is not defined by Casdok in the medical sense of curing the disorder in question, of helping an autistic child or adult overcome the serious cognitive, behavioral and communication deficits that restrict the lives of so many with autistic disorder.  Instead Casdok, consistent with Neurodiversity ideology, asks the question from the perspective of  a social model of disability, as conformity to societal norms:

"""" So what do we really mean by cure? To make someone conform? To be socially acceptable? Assimilated into the collective?! Why can’t society accept everyone is different?"

You have just provided your definition of cure by rhetorical questions framed in the language of those who do not view autism disorders as disorders.

I don't know why you obtained an autism disorder diagnosis for your child. We sought medical attention for our son without knowing anything about autism at that time. We sought attention because he wasn't developing any communication or other functioning skills anywhere near the level of his older brother or any other child we had known.

Cure? Cure would mean providing our son with the same, or similar, ability to understand, function in, even participate in the world that you and I take for granted. Are you, and those who agree with you in the comment section unaware of the autistic Nova Scotia boy who wandered off to be lost forever in a snow storm? Do none of you ever read of the other autistic persons who are lost in traffic or wander away as did Keith Kennedy to be lost in the woods for a week? Are none of you aware of issues of serious, even deadly self injury that affect the severely autistic?

I have been involved with autism advocacy in our home jurisdiction for a decade now. I have visited institutions where severely autistic persons live dependent on the care of others. I have helped some persons with Aspergers in the legal system. I have advocated with other parents, successfully, for pre-school government funded autism interventions and for accommodation of autistic students in our neighborhood schools.

Of course I want my son's disability to be accommodated and I have used  all my abilities to ensure that happens for him and others where I live. But he, and many others with Autistic Disorder, will live their lives within a facility dependent on others with limited understanding of the world.

All cures are hypothetical, until sufficient research is done to find one.

If I could snap my fingers and cure my son, resulting in him having the ability to understand the world more fully, to communicate more fully, to function and survive independently would I do that?

You're darn right I would."

I am not sure how a mother of a non verbal autistic adult comes to subscribe to the social model of disability,  I wish her son well but I hope, for the many parents who continue to try and help their autistic children live the fullest, most rewarding lives possible, and especially for the children themselves, that the research to find cures for autism disorders continues.  If the day that cures, or even significantly beneficial treatments, are found that improve the lives of autistic children and adults then real choices can be made, even if  some would choose not to provide their autistic loved ones with the benefits of such treatments and cures.

Curing autism is not about conformity. It is about giving people disabled by  autism disorders the ability to function more fully and independently in the real world. It is about giving them the same opportunities to experience life that the rest of us, the alleged Neurotypicals, enjoy.

For this parent curing autism is about helping our autistic children enjoy life to the fullest. 

autism

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.

autism

The Swaggering Bully: Obama Appointee Proud of Aggressively Obstructing Efforts to Help Children with Autism Disorders

Ne'eman, who sometimes uses aggressive language and who has attacked the views of some of the best-known autism-advocacy groups, is untroubled by his critics.

New Jersey News,  he doesn't mince words, and some don't like it 

The New Jersey News, to its credit, gave a relatively balanced, if superficial,  account of  US President Barack Obama's disability nominee Ari Ne'eman's activities as an activist opposing efforts by parent and family driven organizations to help their autistic children. The article notes that the Ne'eman appointment has been controversial and that is true.  The article notes that Ne'eman has opposed efforts of autism advocacy groups and that is true.  The article notes, as set out above, that Mr. Ne'eman uses aggressive  language and that is true.

The article notes that Mr. Ne'eman is not troubled by criticism and that appears to be true.  he does not take into account the opinions of those who disagree with him despite their very real interest in autism disorder issues and despite their different and important experiences with autism disorders.

Those who disagree with President Obama's appointee include families trying to treat and cure their autistic children and adults with autism disorders who, contrary to the aggressive rhetoric of Mr. Ne'eman have stated they would in fact like to be cured of their disorders.   Mr. Ne'eman disregards the challenges faced by those with Autistic Disorder and the families who have struggled to help them.  He is not troubled by their criticism ... or the challenges they face.

The New Jersey News article misses the point when it says that there are some who feel that he is not autistic enough.  Mr. Ne'eman is a very high functioning person with Asperger's Disorder. Yet he purports to speak on behalf of persons with Autistic Disorder many of whom, unlike him, are severely affected by cognitive impairment and severe inability to communicate or understand the world.  Mr. Ne'eman's personal experiences have absolutely nothing in common with those of persons with severe Autistic Disorder.  The young university student has neither personal experience nor professional training to provide him with special insights into Autistic Disorder.  And he has no legal or moral right to object to the efforts of families to help their own children.

Mr. Ne'eman does not view autism disorders as disorders in the true medical sense.  His writings speak of "autism" only as a "social" disability. In   the opinion of President Obama's disability appointee  it is only the failure of society to accommodate persons with "differences" that creates autism disabilities according to President Obama's disability council appointee.

My son has Autistic Disorder and is severely affected by it.  It is a real, not a socially created disability.  If he were left unattended out doors he could  quickly perish in automobile traffic or in a snow storm. That, contrary to Mr. Ne'eman's opinions, is a reflection of my son's Autistic Disorder, a real disability, not one created by society.

Mr. Ne'eman, using his aggressive language, has stated often that "we' don't want to be cured, purporting to speak on behalf of all persons with "autism" including the many with a disorder he does not have ... Autistic Disorder.  The New Jersey News article portrays such rhetoric as honesty and I  agree.  I have no reason to doubt that these are the views of brilliant young university student  with Aspergers Disorder, whose social and communication skills are such that he can hob nob with leading political figures inside the beltway.

They are not the views of many adults with Autistic Disorder and they are not the views of families who are fighting so hard to treat and cure their children with Autistic Disorder.  For many Mr. Ne'eman's s views are controversial as stated by the New Jersey News.  They are also offensive attempts to interfere with their children's rights to be treated and cured and with their families' rights to represent them.

President Obama's disability nominee is proud of his obstructionism, of his attempts to disrupt the work of autism advocacy organizations, and cares not about the views of those who disagree with him. Mr. Ne'eman, the anti-autism cure ideologue with Aspergers, once bullied as a child, has now become the bully. And he is backed by one of the most powerful people in the world ... the President of the United States.  Mr. Ne'eman's future is looking very bright.  The same can not be said of efforts to help autistic children and adults through research.

autism

Parents Stand by Son with Aspergers Convicted of Conspiring to Murder Them

The Independent UK reports that the parents of Christopher Monks, a 25 year old man with Aspergers Disorder who plotted with an internet friend to kill them stood by their son on sentencing and asked the court to show leniency.

The internet "friend" returned to the Skarnes home after visiting earlier in the day and attacked the parents who fended him off when he attempted to attack the father in his bedroom with a large kitchen knife.

""The pair were convicted despite the fact that Monks’s father, also Christopher, and his wife Elizabeth have fully supported their son, who was adopted at the age of 10 months. They argued that his condition meant he was unable to separate fantasy from reality and that he had never intended to have them murdered.

.......

Sentencing the pair at Preston Crown Court, Mr Justice McCombe said he felt for Monks’s parents. “No court could fail to be moved by the unstinting love they have for their son,” he said. “In their own words in a letter sent to me they say ‘Whatever sentence is passed, we will serve it with him’.”

But he added both men continued to present a “significant” risk of harm to the public. “I recognise that Mr and Mrs Monks find this difficult to accept but the court has a duty to protect the public and ensure that they are not released into the community until that risk is eliminated.”"

The article illustrates just how much many parents of children with Autism Spectrum Disorders love their children no matter how severe the challenges they present.

autism

A Moving Autism Song and Video

This autism song and video speak volumes. I hope the government of Saskatchewan, and other governments in Canada, the US and the world, will listen.

Autism in Saskatchewan ~ Fall of 09 ~ a Production by A.C. @ Yahoo! Video

autism

Buried Alive: 3 Big Autism Related News Stories Buried at Christmas

What better time of year to  release autism news that you don't want a lazy, ill informed mainstream media to cover than Christmas with everyone, including journalists, busy with family and with news dominated by stories of old St. Nick?  Not one but three, count em THREE big stories related to autism disorders were released just before the Christmas news freeze. Three that were buried alive in the Christmas news freeze:

1) The CDC autism prevalence figures showing yet another major increase in autism diagnoses and subsequent  IACC head Tom Insel's acknowledgment that environment is a component of autism.  

2) The CDC Fourth National Report on Human Exposure to Environmental Chemicals   that measured 212 dangerous environmental chemicals in human bodies.                                                           

3) Announcement of recent CDC Director Julie Gerberding's New Job as Head of Merck vaccines division.

Former CDC director Dr. Julie Gerberding had stated a study comparing autism rates in existing vaccinated non vaccinated populations could and should be done.  It will be interesting to see if Dr. Julie Gerberding head of Merck's vaccine division agrees.

autism

Do Study Results Involving High Functioning Autism Subjects Automatically Apply to Persons with Autistic Disorder and Intellectual Disabilities?

Can the results of studies involving subjects with High Functioning Autism automatically be applied to persons with Low Functioning Autism, to the 75-80%  of persons with Autistic Disorder who are cognitively impaired?

In Brain Serotonin and Dopamine Transporter Bindings in Adults With High-Functioning Autism the authors are careful in the title to make it clear that their study subjects were persons with High Functioning Autism.   The  authors also specify that the subjects all have IQ's equal to or greater than 99 and are not representative of a typical sample of adults in the community. Yet the conclusion stated in the abstract is described as pertaining to all persons with "autism":

"Conclusions  The brains of autistic individuals have abnormalities in both serotonin transporter and dopamine transporter binding. The present findings indicate that the gross abnormalities in these neurotransmitter systems may underpin the neurophysiologic mechanism of autism."

If it is important to identify the subjects of a study as having High Functioning Autism, as having average or greater IQ's,  is it valid to generalize those results to other persons with Autism Disorder and intellectual disabilities?

Does it not seem reasonable that there might be different abnormalities involved in the neurological systems that result in some having High Functioning Autism as opposed to those with Autisic Disorder and cognitive impairment?

And why are more studies not done involving subjects with Low Functioning Autism?

autism

Obama Disability Nominee Doesn't View Autism as a Real Disability, Marginalizes Role of Parents, Caregivers

US President Barack Obama has nominated Ari Ne'eman, a  University student with an apparently very mild form of Aspergers Disorder, to a national disability council.  Since that nomination was made public Mr. Ne'eman has issued statements through friendly bloggers, all too willing to uncritically promote his views,  stating that he DOES see autism as a disability.  Mr. Ne'eman in fact only sees autism disorders as disabilities in the social model sense, in the sense  that society fails to accommodate persons with autism, thereby creating the disability.

The following quote is from a June 2008 NPR  (obviously well before he was nominated by US President Obama) interview:

"As its name suggests, the Autistic Self-Advocacy Network aims to help people with the disorder represent themselves, instead of relying on families and care providers to speak for them. They share a credo with other disability groups: "Nothing about us without us."

Ne'em describes Asperger's and autism as disabilities — but with a twist. "We're disabled by society," he says. "What disables us is, for instance, an education system that's only designed to meet the needs of one kind of student, or societal prejudices which say that autistic people will never be able to live in a community."

[Highlighting added for emphasis - HLD]

Ari Ne'eman, a very high functioning young University student with Aspergers, who is capable of communicating with NPR, the New Yorker, CBC, Newsweek, and Washington politicians, officials and dignitaries,  including the First Lady of the United States, feels entitled to speak authoritatively about Aspergers AND autism, including the 75-80% of persons with Autistic Disorder and cognitive impairments.  He does so on the premise that autism is a disability ONLY because of society's  treatment of people with autism whatever he means by the terms autism and Aspergers.  It is not clear what he in fact means by these terms since he does not endorse the medical model of autism disability.

Apart from not viewing autism disorders as medical disabilities  the  University student with Aspergers feels that his views about Autistic Disorder and other autism  spectrum disorders should be given greater weight in relation to autistic children than the parents and caregivers of those children.  Mr. Ne'eman clearly does not respect the role of parents in representing the interests of their autistic children, particularly those severely autistic children who can not speak for themselves and with whom Mr. Ne'eman has so very little in common. Many parents seek treatment and cure for their autistic children's autism disorder disabilities.

US President Barack Obama is seen by many, including this Canadian, as an outstanding leader on many fronts.  With respect to autism disorders though Mr. Obama has signaled, at best, a lack of understanding of  the real challenges facing the severely autistic ... and the family members who care for them ... by nominating a  University student who does not understand the seriousness of the challenges faced by those with actual Autistic Disorder and their families and caregivers.  President Obama has nominated as a disability representative a person who, at best, views autism as a "social",or societally caused,  not a real disability, who opposes the rights of autistic children to be cured of their autism, and who marginalizes  the role, the right and the duty of parents and caregivers in advancing their autistic children's best interests.

At least  Mr. Ne'eman will be  happy. His presidential endorsement will garner him more interviews with NPR, the New Yorker, CBC, Newsweek, TIME etc., etc., etc., etc., etc., etc.  Meanwhile parents and caregivers will continue to struggle, day in and day out, to actually care for and help their autistic children, the  autistic children on whose behalf Mr. Ne'eman claims to speak.

autism