Friday, February 26, 2010

Autism Rising: National Post & Michael Fumento Say Autism Is Increasing in Canada, the US, Sweden and Denmark

 " Published evaluations of children in Sweden, Denmark and Canada have also shown that autism diagnoses continued to increase after the discontinuation of vaccinations with thimerosal. U.S. cases keep rising as well."

- National Post, February 17, 2010: Michael Fumento: The damage done on vaccinations

The above comment by Michael Fumento,  a featured commentator on the National Post,  is part of an opinion piece condemning critics of vaccine safety and particularly those who assert a connection between some vaccines and autism disorders.  

Fumento and the National Post dismiss fears that autism disorders in some children are caused by the mercury based vaccine preservative thimerosal by pointing to increased autism rates after the alleged removal of thimerosal from vaccines in Denmark, Sweden, the US and Canada. 

For that argument to have any weight at all it must assume that the autism increases are real and not attributable to shifting diagnostic definitions or increased social awareness.

The National Post and Michael Fumento have stated clearly their position that increases in autism diagnoses reflect actual increases in cases of autism disorders.

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Wednesday, February 24, 2010

CDC Advisor Says Autism Increasing in Denmark, Sweden and the United States

Autism epidemic deniers will never acknowledge that autism is really increasing.  Another expert however  has stated that autism is increasing in Denmark, Sweden and the United States.  Adopting the logic of experts like Dr. Eric Fombonne and Dr. Judy Minshew  Pediatric Infectious Disease Specialist  Patsy Stinchfield,  member of the CDC Advisory Committee that recommended that children in the US get annual flu shots,  dismissed  concerns that thimerosal in vaccines contributes to autism:

"Autism is a devastating condition but efforts to prevent autism by removing mercury from vaccines have been ineffective, even when mercury banned in the 1990s in a couple of European countries. 

"Denmark and Sweden, right. So no change. So they said 'Well if we think its Thimerosal or mercury, we'll take it out.' And they took it out and same in the United States," said Stinchfield. "And autism has done nothing but continue to increase.""

Fombonne, Minshew and CDC advisor Stinchfield all argue that thimerosal has been disproven as a causal factor for autism disorders.  For their arguments to have merit the autism increases they are referencing as disproving any thimerosal autism connection would have to be real and not reflections of diagnostic definition expansion or ascertainment factors.

So what is causing the increasing rates of autism in Europe and the US? Most of the experts who weight in on the issue do so for the purpose of supporting vaccine safety.  The learned scholars  have demonstrated no real interest in studying and finding out  what is causing the startling autism increases that parents,  ill informed, hysterical, incompetent parents have been pointing out for years. 

Sunday, February 21, 2010

Removing Severely Autistic from the Autism Spectrum

The DSM 5 promotes the stigmatization of low functioning persons with autism disorders by excluding any reference to cognitive  or intellectual disabilities in its description of  the new categories of autism spectrum disorders.  The mainstream media has long ensured that such stigmatization prospers in the popular culture by focusing on stories of great feats by some persons with Aspergers and Autism while steadfastly ignoring the plight of the severely autistic persons living in institutional care.  In a similar vein every protest by even a handful of persons with  Aspergers and High Functioning Autism,  of "negative" depictions of autism, depictions of the realities of life faced by the severely autistic, is promoted as enlightened self advocacy by a largely autism ignorant mainstream media.

The mainstream media continues its obsession with high functioning autism and Aspergers  in discussing the autism changes in the DSM 5 with article after article about how the changes will affect those with Aspergers.  Some of that attention to the potential impact  on persons with Aspergers is certainly warranted but not to the point of refusing to  consider the impact of the DSM 5 changes on those at the severely affected, low functioning,  end of the autism spectrum, those with Autistic Disorder and Intellectual Disabilities.  

The fact that between 75 and 80% of persons with  autistic disorder, as it is currently called, the category comprised of the original pre-1994 DSM change  "autistics", also have intellectual disabilities is hidden completely  from sight in the DSM 5.   One of the signposts of stigmatization is when it is not considered polite to mention some persons or topics in polite company and the DSM 5 has ensured that the stigmatization of persons with autistic disorder and intellectual disability will continue.  

The DSM 5 pretends that ASD and ID  are unrelated, that delay or inability in understanding language is not itself  indicative of a cognitive or intellectual deficit, and  by pretending that the 75-80% of persons with cognitive disorders AND assessed  intellectual disabilities is just an amazing coincidence, one not needing discussion; one not needing  mention in the diagnostic  manuals used by psychiatrists, psychologists and general practitioners.  It is only a matter of time until persons with Autism Disorders and Intellectual Disabilities are officially excluded from the Autism Spectrum of Disorders category of the DSM.

The mainstream media has responded to the proposed changes by obsessing over the impact on those with Aspergers and, with few exceptions, ignoring the impact of the changes on the lower functioning persons with autism, those with intellectual and cognitive deficits.  The headline of one an AP article (which is one of the more balanced articles on the autism changes) highlights the media focus in reporting DSM 5 autism changes:

This humble blogger, and father of a 14 year old son with Autistic Disorder and profound developmental delays,  was interviewed and quoted by Lindsey Tanner  in the above noted AP article.  I appreciate her effort to provide some balance to the discussion but even that article, as the headline indicates, is focused primarily on the impact on "Aspies" of the DSM 5 autism changes.  Few other media articles showed that much balance. Not a single article focused on what  impact the changes would have on those most severely affected by autism disorders.  

Both the DSM 5 and the mainstream media have adopted a perverse triage system when it comes to discussing autism disorders. The highest priority is given to examining the impact of  official diagnostic labels and criteria on those least impaired by autism disorders first and foremost and examine the impact on those most affected later ... if ever.

The DSM has, in the DSM IV and DSM 5, been changed to expand the definition of autism to include those with Aspergers, those at the high functioning end of the autism spectrum of disorders.  Some at the high functioning end do not consider their condition to be a medical disorder even though they embrace medical terms like Autism and Aspergers. Meanwhile the original autistic persons of the DSM III are increasingly stigmatized, rendered invisible by failure to mention the most salient and disabling features of their disorders ... their intellectual disabilities and cognitive impairments.  The stigmatization of intellectual disabled, low functioning autistic persons is clearly illustrated in the Lindsay Tanner/AP article;

Liane Holliday Willey, a Michigan author and self-described Aspie whose daughter also has Asperger's, fears Asperger's kids will be stigmatized by the autism label — or will go undiagnosed and get no services at all.   Grouping Aspies with people "who have language delays, need more self-care and have lower IQs, how in the world are we going to rise to what we can do?" Willey said.

The expansion of autism in the DSM IV and DSM 5 to include more and more persons barely impacted by autism will result in more identifcation of autism with giftedness in the public mind and the severely affected will be even more completely removed from public discussions of autism. It is only a matter of time until those with autism and intellectual disability are officially removed from the autism spectrum completely.  It will probably happen officially  in the DSM 6 but it is already well under way. 

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Friday, February 19, 2010

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!

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Thursday, February 18, 2010

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.


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Sunday, February 14, 2010

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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Saturday, February 13, 2010

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.

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Sunday, February 07, 2010

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.

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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Thursday, February 04, 2010

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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Wednesday, February 03, 2010

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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