With Birthday Cake In the Belly Conor Is Now Officially 14

As you can tell from yesterday's blog pictorial, Hello Conor, we have been looking foward to Conor's 14th birthday (and thinking how lucky we are to have him in our lives).  

With birthday cake duly consumed Conor is now officially 14!

autism

Hello Conor

Conor from day one.

We were happy to welcome him into the world then and we are very happy he is with us now.

 

autism

Autistic People Don't Like Hugs? Quick, Someone Tell Conor

The news is full or  reports  (1), (2), (3), (4), of autism "hug avoidance", which claim that persons with autism do not like hugs and other physical contact:


"A defect in the brain explains why many people with autism avoid touching and hugs - even from their parents, research has shown." (UKPA) 


Apparently Conor did not get the memo. 

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Winter Retreats And Conor Has Some Outdoor Fun

Conor gets outdoors for some fresh air, sun and fun on a sunny, warm Saturday afternoon. The snow and winter are beginning their retreat and Conor takes advantage.

autism

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."




autism

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

autism

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.

autism