The Time is Now to Redress the Autism Research Imbalance

As with many complex disorders, causation is generally thought to involve some forms of genetic risk interacting with some forms of non-genetic environmental exposure. The balance of genetic risk and environmental exposure likely varies across the spectrum of ASD.  ..........  Researchers are working to better understand the interaction of genetic vulnerability with developmental experiences, such as a specific environmental exposure. While gene-environment interactions have been hypothesized to play a role in many medical disorders, these interactions have been difficult to prove or disprove beyond statistical tests showing that some genetic subgroups have a greater response to some environmental factor. ............ Progress in identifying environmental factors which increase autism risk has been made recently (Eskenazi et al., 2007; Palmer et al., 2006; Palmer, Blanchard, & Wood, 2009; Rauh et al., 2006; Roberts et al., 2007; Windham et al., 2006), although this area of research has received less scientific attention and far fewer research dollars than genetic risk factors. Environmental factors may be pertinent not only to brain development but also to chronic systemic features of at least some subgroups of ASD.

- The 2010 Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research - January 19, 2010, Question 3: What Caused This To Happen and Can It Be Prevented?

The 2010 IACC Strategic Plan  statement  that environmentally focused autism research has been under funded and largely ignored could properly be characterized as a long overdue confession by the autism research establishment.  Autism research has been  focused overwhelmingly on genetic causes of autism to the near exclusion of environmentally focused research. for well over a decade with potentially serious consequences for our current understanding of possible autism causes and treatments.   Given that imbalance it is perfectly understandable that few potential environmental causes of autism have been identified or confirmed through research.  If we don't open our eyes and look, if we don't do the research, then we will not find environmental causes of autism.

The overwhelming imbalance in favor of genetically based autism research was identified over a decade ago by  researcher Teresa Binstock in her 1999 description of the  "It's gotta be genetic" autism research paradigm.  Binstock  pointed to the culprit -  the old guard network that insisted that autism research be genetically focused in order to have any hope of receiving public funded research dollars:

My own hunch is that the NIH and NIMH will not change from within; the senior practitioners of the "it's gotta be genetic" model have too much influence. Just as Semmelweiss and his data were suppressed, so too will the NIH/NIMH autism-research insiders continue to act against the the growing body of new data in autism; the NIH's pro-genetic old-timers will cling to their paradigm and its funding. As a result, change within the NIH and NIMH will have to be initiated from outside those tax-supported corporations.

-Teresa Binstock, 1999, IGNAZ SEMMELWEISS and AUTISM: when prevailing paradigms resist change

The imbalance in favor of genetic over environmental focused autism research has resulted in a call for more balance from many sources and hopefully that call will result in more than lip service.  There have been signs of an autism research paradigm shift over the past few years from the purely genetic model of autism to one which looks at autism as the result of a genetic and environmental interaction but the pace of change has been far slower than first hoped as pointed out by the 2010 IACC Strategic Plan above , by Dr. Irva Hertz-Picciotto and by Dr. Jon Poling.

Too much time has been wasted on the irrational insistence that autism research must be genetically focused.  We have lost the knowledge that years of more balanced autism research, with greater attention to potential environmental factors, might have given us. We must find that balance as we move  forward or more knowledge, and possibly treatments and cures, will continue to be lost.

Environmentally focused autism research must receive more attention and funding. Even the IACC has recognized the imbalance in favor of genetic over environmentally focused research. 

It is now time to redress the imbalance. 

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Discrimination Against Persons with Low Functioning Autism

"My identity is attached to being on the autism spectrum"

-  Ari Ne'eman, Founding President, Autistic Self Advocacy Network, Obama Administration Disability Appointee, New York Times, Nov 3, 2009

I am typically the only one on ASAN's board to interject the issues of the LFA, because my son is one. Whenever I do this, I am attacked by a few, including Clay Adams. Clay doesn't like it when I discuss the LFAs on ASAN's board. Neither do a lot of people. I wouldn't be surprised if I was eventually kicked off that board at some point. I'm the only one that I know of that has ever been put into moderation mode there. The fact is, that Clay Adams has no interest in the LFA and never has.

There are others though that do think LFA needs more representation and advocacy on that board and in the online autism community. However, most don't want to really expose themselves for fear of being attacked like I have. They see what has happened to me and they don't want any of that to happen to themselves.

- Kent Adams, ASAN Board Member, Father of Son with Low Functioning Autism, quoted on  Autism's Gadfly Comment Section,  February 3, 2010

Any mention of Low Functioning Autism, autism and intellectual disability,  or autism and cognitive impairment is often met by hostility from some  persons with HFA/Asperger's.  Many of these persons identify with being on the "autism spectrum" as does Ari Ne'eman, the very high functioning university student  with Asperger's.  

Videos that portray the harsher realities of life for lower functioning autsitic persons are met with very high profile, media seeking protests by Ari Ne'eman and others who like to identify with the autism spectrum. ASAN which claims to be an autism "self" advocacy organization has no actual low functioning autistic persons,  on their Board of Directors, for the obvious reason that such a role would probably be beyond the ability level of persons with low functioning autism disorders.  As the comment by Kent Adams, a father of a low functioning autistic boy, indicates he is pressured to refrain from raising LFA as a topic for discussion by the ASAN Board.

The ASAN Board is comprised almost entirely of very high functioning persons "on the spectrum", lawyers, technicians, writers and university students.  ASAN has a very broad definition of autism going beyond persons with an autism diagnosis to include those who simply identify with  autism :

The terms "Autistic" and "autism spectrum" often are used to refer inclusively to people who have a diagnosis in any of the official categories (see Diagnosing Autism) or who self-identify with the Autistic community.

ASAN's broad definition of autism helps extinguish the concept of autism as a medical disorder or diagnosis and helps include higher functioning persons with no actual autism diagnosis.  At the same time the ASAN autism definition mentions intellectual disability only in a limited sense of difficulty with communication and describes such difficulty as a "different way of thinking" suggesting that it is usually accompanied by being gifted in other areas:

2. Non-standard ways of learning and approaching problem solving. For example, learning "difficult" tasks (e.g. calculus) before "simple" tasks (e.g. addition), difficulty with "executive functions," or being simultaneously gifted at tasks requiring fluid intelligence and intellectually disabled at tasks requiring verbal skills.

For persons who like to identify with "autism", whatever that means to them, it is easy to accept the unsubstantiated allegations that Mozart, Einstein, Van Gogh and other historical geniuses were autistic. When credible sources such as the CDC and CPA are cited to back up the claim that large numbers of persons with Autistic Disorder diagnoses are also intellectually disabled some bloggers with HFA and Asperger's, and even some autism researchers, react by dismissing or ignoring the information.  Kent Adams, noted above, has described receiving hostile reactions when he attempted to raise Low Functioning Autism issues on the ASAN board. 

The denial of the existence of Low Functioning Autistic persons, persons with Intellectual Disabilities  and cognitive impairment,  is discrimination. The reason why some persons with HFA and Asperger's  refuse to recognize the realities of large numbers of low functioning autistic persons while embracing undiagnosed higher functioning persons  is clear:

Identifying with "autism" is cool, it can make the person identifying with autism feel better in some way.  Who wouldn't want to identify with a Mozart or an Einstein? 

Identifying with those who are intellectually disabled is not cool. Identifying with those who live their lives dependent on the care of others, some in very secure institutions ... that's not so cool.

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Autistic Halifax Teen Jennifer Graves-Smith Found Safe After Wandering For 10 Hours In Bitter Cold

Autistic children and adults are prone to wandering and becoming lost, sometimes with limited communication skills. Sometimes, it ends well as it has for Jennifer Graves-Smith in Halifax, Nova Scotia:

As reported on the CBC :

"An 18-year-old with autism is safe after she disappeared for nearly 10 hours in bitter cold.

Jennifer Graves-Smith vanished after leaving her school, Halifax West High, at about 3:30 p.m. AT on Tuesday. She was reported missing when she failed to turn up for her bus ride home.

Halifax Regional Police said the teen wandered near the school for hours and ended up in the lobby of a nearby apartment building just after 1 a.m. Wednesday."




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Autism Rising in the New York Times

The New York Times has joined those who assert that rising autism rates reflect a real increase in autism and are not explained solely by changes in autism diagnosis definitions and increased awareness:

"In the United States, anti-vaccine groups have advanced other theories since then to explain why they think vaccines cause autism. For years, they blamed thimerosal, a vaccine preservative containing mercury. Because of concerns over the preservative, vaccine makers in 2001 largely eliminated thimerosal from routinely administered childhood vaccines.

But this change has had no apparent impact on childhood autism rates. "

The New York Times argument ,previously advanced by Dr. Eric Fombonne and Dr. Nancy Minshew, only makes sense if it is based on real increases in autism rates. Increases in autism rates after removal of thimerosal from vaccines solely because of diagnostic definition changes and ascertainment factors would not indicate whether thimerosal did or did not play a role in causing autism. 

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Missing: Jennifer Graves Smith, Halifax Nova Scotia Teen With Autism

Jennifer Graves-Smith

The Halifax, Nova Scotia paper the  Chronicle Herald  reports that Jennifer Graves-Smith, an 18 year old Halifax girl with an unspecified autism disorder, is missing after she left her high school yesterday at 3:30 pm:

Police say she didn't take her assigned school bus and was seen walking down a wooded pathway toward the Keshen Goodman Public Library on Lacewood Drive.



Police describe Ms. Graves-Smith as five-foot-eight and 130 pounds with shoulder-length brown hair.
She was wearing a slate blue Columbia jacket. She's known to usually have the hood up, the news release noted. She is also known to turn away when strangers approach.


She had a black and red backpack with her.


Anyone with information is asked to contact  police at  902 490-5016

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Pandemic or Profit and Panic? WHO Scientist Claims Swine Flu Pandemic Was Completely Exaggerated

Inforwars (see also the Daily Mail) reports that a WHO scientist, Professor Ulrich Keil, director of the WHO’s Collaborating Centre for Epidemiology,     has testified  during hearings at Strasbourg France of the Parliamentary Assembly of the Council of Europe, a body comprised of democratically elected representatives of 47 nations, that the Swine flu pandemic was completely exaggerated:

“With SARS, with avian flu, always the predictions are wrong…Why don’t we learn from history? It [swine flu] produced a lot of turmoil in the pubic and was  completely exaggerated in contrast with all the really important matters we have to deal with in public health. We know the great killers are hypertension, smoking, high cholesterol, high body mass index, physical inactivity and low fruit and vegetable intake.  In spite of all these facts, governments instead wasted huge amounts of money by investing in pandemic scenarios whose evidence base is weak.”

PACE is holding hearings pursuant to a motion by the former chair of the PACE Health Committee, Dr. Wolfgang Wodarg, a former German lawmaker,  medical doctor and epidemiologist and will try to determine whether the Swine Ful, H1N1 pandemic was a false pandemic declared on the advice of medical advisors with close financial ties to the pharmaceutical companies that benefited from the production of the H1N1 vaccines.  The investigation will also look at why two shots were initially advised when one was later found to be sufficient, the haste at which the vaccines were developed and the use of adjuvants in the vaccines.

As reported by Infowars  Dr. Wodarg has been very critical of WHO actions in declaring the Swine Flu out break a pandemic noting that the definition of pandemic was changed and softened and that the pandemic was declared with very little evidence to support the declaration:

“It was stated in panic- stricken terms that this was a flu that could threaten humanity and a great number of humans could fall ill. This is why billions of dollars of medications were bought.” Wodarg said.

He added that the the change in definition “made it possible for the pharmaceutical industry to transform this opportunity into cash, under contracts which were mainly secret.”

“In my view, the WHO undertook an incomprehensible action, which cannot be justified by scientific evidence. The Council of Europe should investigate this to see how WHO can undertake this kind of dangerous nonsense,” said Dr Wodarg.

Infowars also reports that  WHO’s flu chief, Dr Fukuda, insists WHO's swine flu scientists were not improperly influenced by ties to  pharmaceutical companies. Dr. Fukuda  criticizes those who call the pandemic a fake:

“Let me state clearly for the record – the influenza pandemic policies and responses recommended and taken by WHO were not improperly influenced by the pharmaceutical industry.” Fukuda told the inquiry.

He said those calling the epidemic fake were wrong and irresponsible."

Personally,  I did wonder from the outset whether the pandemic label and the panic were justified.  But I am just an ordinary citizen and far from being  an expert on epidemic outbreaks.  There have been actual experts, even public health authorities, other than Dr. Wodarg, who have questioned all along whether the pandemic label and the panic generated by public health authorities pushing everyone to get the H1N1 vaccine was appropriate and necessary.

The PACE investigation is important for addressing issues fundamental to public health  around the globe.  Decisions made to invest in and promote vaccine ingredients will always have huge impacts on our health. The PACE investigation is examining whether resources that might have been spent elsewhere were diverted as a result of a false panic generated by profit motives and undue influence.  What they learn will be important for our future health decisions.  

The Swine Flu pandemic also raises issues fundamental to democracy.  The role of powerful, profit driven organizations in influencing public health decisions and allocating resources is critical.  The role of public health authorities in promoting panic based on weak evidence and demonizing citizens as irresponsible for questioning their decisions are important concerns to be examined by responsible bodies of deliberation. These are important issues for the health of citizens and for the health of democracies that purportedly value fee expression and government of the people, by the people, for the people. 

Videos and Transcripts of the statements by Professor Keil, Dr. Wodarg, Dr. Fukuda and Dr. Luc Hessel of the Europeoa Vaccine Manufacturers, along with their biographies are available on the PACE web site.

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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

 (E)

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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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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