Sunday, January 31, 2010

DSM-5 Sweeps Intellectual Disability Under the Autism Rug

The DSM-5 revisions to what will now be officially known as the Autism Spectrum Disorders are not without merit.  The American Psychiatric Association's   DSM-V Neurodevelopmental Disorders Work Group April 2009 Report   emphasizes for the first time that there are different degrees of severity on the autism "spectrum" of disorders.  That is a good thing, one that many parents of severely autistic children will appreciate as the public consumes movie after movie about brilliant, talented persons with High Functioning Autism and Aspergers.

Having handed out that token of recognition of reality at the severe end of the autism spectrum, however, the Report then goes on to take it back by intentionally hiding the fact that approximately 80% of persons with what are currently known as Autistic Disorder also have intellectual disabilities or cognitive impairments.  It is true that intellectual disability and cognitive impairment do not receive much overt recognition in the current edition of the DSM but they are there in the description of Aspergers Disorder:

290.80 Asperger's Disorder


There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

The description of Asperger's Disorder in the current DSM-IV results in a division between Aspergers and Autistic Disorder based on cognitive delays.  This division is not expressly mentioned at all in the proposed DSM-5.  But the 80% of persons with Autistic Disorder and intellectual disabilities or cognitive impairment will still be there ... hidden without any express mention in the severe ASD category.  There just won't be any  mention of  intellectual disabilities  and autism in polite company ... in the New Yorker Magazine ... in Hollywood movies ...  in society generally ... or in the Autism Spectrum Disorders category of the  DSM-5.

The Report also appears to broaden the Autism Spectrum,  yet again, at the high functioning end of the spectrum, by including a category called Subclinical AS Symptoms and, in what could have been drawn directly from a Neurodiversity ideological manual, a category called Normal Variation.

The Subclinical category expressly states that the category is comprised of persons with no significant interference or impairment while the Normal Variation simply refers to socially isolated or "awkward".  There is no explanation why such categories are included in a description of neurodevelopment disorders  if there is no significant interference or impairment; if they are just normal variations of behavior. 

The DSM-5 removes any express reference to intellectual disability or cognitive impairment and adds new sub-clinical categories of high functioning persons with no significant impairment or interference. Autism,  once a neuro-developmental disorder as set out in the DSM-III,  will become increasingly seen as a  mild condition full of Temple Grandins, Ari Ne'emans and Alex Planks and a host of talented and quirky historical geniuses. 

The DSM-5 has succumbed to Neurodiversity ideology, Hollywood movies and a form of  discrimination by omission against the most severely affected by autism disorders - those with intellectual disabilities requiring the most attention and assistance.  They are the invisible autistics, the ghosts of the new Autism Spectrum of Disorders about whom the DSM-5 Autism Spectrum Disorders category will make no mention.

The DSM-5 may become a useful tool ... at concealing the reality that intellectual disability and cognitive impairment are more than just co-morbid conditions associated with autism in some instances ... they are part of what it means to be severely autistic. Unfortunately the DSM-5 Neurodevelopmental Disorders Work Group has chosen to sweep intellectual disability and cognitive impairment under the Autism Spectrum Disorder carpet.

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Saturday, January 30, 2010

O Conor, Where Art Thou?

Conor loves the songs on the O Brother,  Where Art Thou? soundtrack.  He used to ask for it every time, and I mean every time, we got in the family car.  After a while we had to wean him off it so that we could listen to other music.  Conor does love all types of music and will listen to classical (especially Mozart), easy listening jazz, country, rock, blues, and ... bluegrass. But in the car for a long time he always wanted "Big Rock Candy Mountain" which is what he called the movie's soundtrack CD.  

Tonight I was relaxing alone at home with Conor; his brother and mother were both out with  friends.  I checked the television guide just before 6 and saw that O Brother, Where Art Thou? was about to start on one of the channels.  Conor had never seen the movie, and we had not played the CD in a long time,  so I asked him if he wanted to  watch it to prep him in case he got over excited.  I needn't have worried.

Conor sat quietly, mezmerized throughout the entire movie.  His face lit up with a huge smile each time one of the very familiar songs played. I spent a couple of quiet enjoyable hours with my buddy ... and with the great cast and soundtrack of O Brother, Where Art Thou?.

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Dr. Eric Fombonne and Dr. Nancy J. Minshew Both Said Autism Increases are Real

"   Nancy J. Minshew is finally ready to take off the gloves.After years of sitting back and hoping the science would speak for itself, the director of the University of Pittsburgh's Center for Excellence in Autism Research has decided it's time for her to take a personal stand.  Autism is not caused by vaccinations, she says, and those who continue to push that theory are endangering the lives of children and misdirecting the nation's scarce resources for autism research."   The weight of the evidence is so great that I don't think there is any room for dispute. I think the issue is done," said Dr. Minshew, who runs one of nine top autism research centers funded by the National Institutes of Health.

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."

Mark Roth, Pittsburgh Post-Gazette, ScrippsNews, January 31, 2008

Followers of Dr. Eric Fombonne  (eg. Luna the Cat) insist that the good Doctor does not maintain that autism is rising.  They claim that he has published articles and made comments to the contrary. They assert  that his view is that the dramatic increases in autism disorders do not reflect real increases in autism; that they are due entirely to diagnostic definition changes, increased autism awareness etc. 

I agree that Dr. Fombonne has elsewhere argued that increases in autism are not real.  That is exactly why I pointed out that in the Mark Roth, ScrippsNews article above Dr. Fombonne said exactly the opposite.  The article is still available on line and, two years after it  appeared, there is no indication that Dr. Fombonne has sought to clarify his statements to Mr. Roth or to have his position as set out therein retracted or clarified.

Mr. Roth claims that Fombonne used rising autism rates in Quebec after the alleged removal of thimerosal from vaccines in that province to demonstrate that thimerosal did not cause autism.  That argument would have no merit if the rising autism rates referenced by Dr. Fombonne did not reflect REAL increases in autism. 

Nor did I take Dr. Fombonne's views as set out by Mr. Roth out of context.  His position that autism rates rose in Quebec after removal of thimerosal is identical to that of Dr. Nancy J. Minshew's statement as quoted by Mr. Roth. 

Dr. Fombonne and Dr. Minshew both argued that autism rose after removal of thimerosal from vaccines and that therefore thimerosal does not cause autism.   Dr. Minshew even called it one of the main pieces of evidence against the vaccine (thimerosal) causes autism theory.   She said that the weight of that evidence was so great that their was no longer room for doubt.   But that argument can only be right IF Dr. Minshew and Dr. Fombonne  were asserting that rising autism rates reflect a REAL  increase in autism.

Autism is rising, it is actually and really rising.  Take it from Dr. Minshew .... and Dr. Fombonne.

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Friday, January 29, 2010

DSM-5: The American Psychiatric Association Gift to Autism Epidemic Deniers

DSM-5 Autism Spectrum Disorders
(still under consideration)

Over the last decade and a half autism has been rising with the numbers of autism disorder diagnoses increasing from 1 in 500 to 1 in 110. There can be no doubt that a significant part of that expansion occurred with the expansion of the diagnostic criteria for autism in the DSM-IV and in particular with the grouping together of autistic disorder and Aspergers Disorder in one category, the Pervasive Developmental Disorder category.  There is no serious dispute that   part of the startling increase in autism disorders is due to the  1994 changes but as 1994 recedes further into the past, and as the number of autism increases continuing to rise significantly the 1994 changes grow less and less credible as a satisfactory explanation for the rising autism disorder diagnoses. With each upward revision in autism disorder estimates by the CDC it is becoming increasingly clearer that we are in the midst of real increases in autism disorders.  Those who deny that autism is actually increasing need help in clinging to their faith like insistence that autism is not rising, that there is no autism epidemic.

The autism epidemic deniers have had to expand, and vary, their diagnostic change arguments to include increased autism awareness and ascertainment, allegedly expanded autism services resulting in diagnostic substitution and so on. Even in the face of December 2009 statements by Dr. Tom Insel, Director of the IACC, that diagnostic change and ascertainment factors could only account for approximately 50% of autism disorder increases the deniers cling to their quasi-religious faith that autism is not, can not, be increasing but they are running out of credible arguments to make their case. Even the deniers insistence that autism disorders are 100% genetic, and therefore could not possibly be increasing, is starting to lose ground to a paradigm which suggests that autism results from the interaction of genetic and environmental factors. The autism epidemic deniers are growing desperate and their assertions that autism is not increasing are growing more tired and unconvincing with each upward estimate in numbers of persons affected by autism disorders. The autism epidemic deniers need help and help may be on the way in the form of a gift from the APA ..... the DSM-5.

The American Psychiatric Association announced in press release 09-65, December 09 2009, that the DSM 5 release date was postponed with publication now scheduled for May 2013.   The postponement is probably frustrating  but, once published, the DSM-5 should still be a gift to autism epidemic deniers. The  DSM-V Neurodevelopmental Disorders Work Group April 2009 Report  recommends that  the Pervasive Developmental Disorder (PDD) category be renamed to the Autism Spectrum Disorders which will officially combine the old PDD disorders into one spectrum of disorders.  The spectrum would be divided according to severity of symptoms with new descriptions of the diagnostic criteria for each category of severity..  

These changes appear to be quite substantial and may, or may not, prove to be of benefit in understanding what are already commonly called autism spectrum disorders.  But with the conversion of the PDD category to an officially recognized autism spectrum of disorders it is inevitable that those who simply do not want to believe that autism disorders are actually increasing will once again point to diagnostic definition change to explain, and deny, any future autism disorder increases. They will certainly argue, at the very least, that the 2013 increase in estimated autism cases renders it impossible to determine whether any post 2013 increase in autism estimates are real or resulting from the 2013 diagnostic changes.

Sixteen years later autism increases are still blamed on the 1994 DSM changes.  The 2013 changes should help  postpone acknowledging the reality of autism increases for at least  a further sixteen years.  The autism epidemic deniers, thanks to this expected  gift from the American Psychiatric Association, will have  a powerful new tool to continue their fight until at least 2029.

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Tuesday, January 26, 2010

Obama Disability Nominee Questioned About His Views that Autism Disorders are Not Medical Disorders and Should Not be Cured

President Barack Obama's disability nominee Ari Ne'eman is facing questioning concerning his view that autism is a  socially created disability  not a medical disorder or  disability and his well known opposition to curing autism disorders and to investing in cure oriented autism research. His representative character as an autism spokesperson is also questioned in light of the fact that he has an Aspergers diagnosis, was only diagnosed at age 12,  and is very high functioning:

" According to your website you received a diagnosis of Asperger’s Syndrome at the age of twelve, you also appear to be a very articulate young man attending college and launching a successful career. Please explain how your circumstances equip you to understand and represent low-functioning people with autism and their caregivers?"

Age of Autism sets out the letter from John Gilmore of the Autism Action Network, formerly A-Champ, requesting clarification on Mr. Ne'emans views. Age of Autism also reports Mr. Ne'eman's statement that he  is at present unable to address these concerns as he is following White House orders not to speak publicly on these important issues pending completion of the confirmation process:

"  I was asked recently by the White House to avoid any further public appearances and speaking to the media until after my confirmation process is complete and I was checking with them as to whether or not it would be acceptable for me to respond to the questions you have sent. Regrettably, they've asked that I avoid answering any questionnaires not provided to me by Senate offices as part of the confirmation process. As a result, I cannot submit my responses right now."

I am not sure why a well educated young man of obvious high intelligence, excellent communication skills and advanced social skills that enable him to function so well in Washington World even has an Asperger's diagnosis let alone feels entitled to speak as a representative of those severely disabled by Autistic Disorder deficits, those who can barely communicate, with or without any assistive technology, those who injure themselves seriously out of frustration,  perish as a result of being lost in a snow storm or live out their lives in institutional care.  The New Yorker Magazine's face of autism is doing well hanging out with his Washington buddies but he does not resemble in any way people with severe Autistic Disorder.

President Obama's appointment of a media star, anti autism cure, very high functioning university student with Aspergers does not auger well for future research aimed at understanding the causes of autism and future treatments and cures.  When it comes to hoping for some real autism science, some cause and treatment oriented autism research President Obama has spoken loud and clear by nominating as a disability representative a  creation of the media elite.  He has clearly told parents hoping for cures for their children "NO YOU CAN'T".

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Monday, January 25, 2010

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.

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Sunday, January 24, 2010

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.

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Saturday, January 23, 2010

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.

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Friday, January 22, 2010

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?

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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. 

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Wednesday, January 20, 2010

Autism Insanity: Kev Leitch Makes It Up As He Goes


(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.

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Tuesday, January 19, 2010

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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Sunday, January 17, 2010

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.  

Cynthia Zahoruk
Autism Canada

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Saturday, January 16, 2010

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.

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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.

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Wednesday, January 13, 2010

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.

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Monday, January 11, 2010

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.

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Sunday, January 10, 2010

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. 

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