Autism Rising, Environmental Causes of Autism Disorders, and the Top Autism Interview of the 2000-2009 Decade

The autism interview of the decade, from the perspective of this father of a severely autistic 14 year old boy seeking real answers and future directions concerning my sons Autistic Disorder,  is the David Kirby interview with Dr. Tom Insel in December 2009. There are many contentious debates in discussions of autism disorders including the debate over whether the startling increases in rates of autism diagnoses over the past decade from 1 in 1000 to 1 in 500 to 1 in 110 reflects a real increase in autism or whether they are attributable entirely to the diagnostic  manual changes in the early 1990's combined with increased awareness and the alleged existence of autism services motivating parents to seek autism diagnoses.  Tied directly to this issue is the question of whether autism is caused entirely by genetic factors or whether environmental factors are also involved.

David Kirby's recent interview with Dr. Tom Insel, head of the IACC, and not known to be a celebrity actress, an anti-vaxxer or an hysterical, rage filled parent of a child with an autism disorder,  sheds much light on these issues. I encourage everyone, including reporters and journalists with Mainstream Media outlets and anti autism cure Neurodiversity ideologues like Obama disability nominee Ari Ne'eman, to read the transcript of the Kirby interview with Dr. Insel in its entirety.  Some important points made by Dr. Insel in that interview:

"So how much of the doubling or - in this case tenfold increase over a decade - how much of it is related to change in diagnosis, how much to ascertainment? 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." 

...

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.

...

 Yes. 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." 

The acknowledgements by Dr. Insel, head of the Interagency Autism Coordinating Committee, (1) that autism is really increasing and (2) that there is an environmental component to that increase are huge developments in our attempts to understand autism disorders and what is causing them. The assumption for over a decade has been that autism is 100% genetic and that none of the autism increase is real.  Funding of autism research has reflected those twin assumptions.  Now is the time to face autism reality, to start researching and understanding the interaction of genetic and environmental factors that cause and contribute to autism disorders. With the knowledge gained from understanding what causes autism disorders we will be much better able to identify treatments and cures to help those afflicted by these serious disorders.

David Kirby's December 2009 interview with IACC Director Tom Insel easily ranks as the top autism interview of the 2000-2009 decade ... in the opinion of this humble father of a son severely affected by Autistic Disorder. 

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Autism Cure and Recovery and Obama's Divisive Disability Nominee

One of the great surprises of the Obama administration, for this Canadian father of a 14  year old boy with severe Autistic Disorder, and long time autism advocate, is the nomination of a divisive, confrontational but very high functioning young university student with Aspergers to a prominent US disability council.  Mr. Obama won respect around the world, including here in Canada, for his ability to reach across traditional political battle lines to move forward with a consensus.   Yet, with the nomination of Ari Ne'eman President Obama has nominated a young man of limited experience with, or knowledge of, autism disorders and absolutely no experience with severe Autistic Disorders who opposes curing autism, and mocks and ridicules the concept of recovery from autism disorders  despite the work done over many years by people like Dr. Doreen Granpeesheh of CARD to do exactly that.

Mr. Ne'eman also attacks the Autism Speaks organization which has raised autism awareness substantially by its many high profile media events and by its involvement in the establishment of World Autism Awareness Day recognized by the United Nations. Mr. Ne'eman himself has found an organization led by people just like him ... very high functioning autistic persons or persons with Aspergers.   He has displayed in his public comments no understanding of the serious life long challenges facing severely autistic children and adults. 

Nor has he shown any respect whatsoever for the role of parents in raising severely autistic children to live the most fulfilling lives possible and the wishes of many of them that research aimed at finding autism treatments and cures continue.  Mr. Ne'eman, the young university student, views the "autism spectrum" as an entity of which he is the natural leader. In Mr.Ne'eman's mind he is better suited as a person with an extremely mild form of autism spectrum disorder to decide what is important for severely autistic children than the parents and families who care for and love them.  For President Obama to embrace this divisive ego  as a disability council nominee is bizarre and unsettling. 

My opinion carries zero weight in US political matters.  Perhaps as a Canadian my opinion actually carries a negative factor. But as the father of a severely autistic son who was diagnosed with his Autistic Disorder before Mr. Ne'eman received his very mild Aspergers diagnosis, and who has been involved in autism advocacy for a dozen years, I know that this appointment will cause great harm to the future prospects of the severely autistic in the US and elsewhere in the world beginning right here in Canada where US influence is not an abstraction but a fact of daily life.  For many years US autism research, including the research conducted by Dr. Ivar Lovaas, and the work done at places like CARD and the May Institute, have been huge positive influences in helping Canadian children with autism disorders including my son.  It now looks as though US autism thinking is taking a turn for the worse and that will be felt here in Canada... to the detriment of children with severe Autistic Disorder ... children like my son Conor.

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Daniel Can't Eat Because of Autism but Obama Disability Nominee Ari Ne'eman Says Don't Cure Autism

US President Obama's disability nominee Ari Ne'eman does not believe that autism should be cured.  To Mr. Ne'eman, and his supporters,  curing autism is morally reprehensible.  Mr. Ne'eman,  a very high functioning university student with Aspergers Disorder, has every right to refuse treatment or cure for his Aspergers which he does not consider to be a disability.  But does he have the right to insist that other people's children should not be cured of autism disorders, that no research be conducted to develop treatment and cures?

Some children with autism suffer much more than teasing from fellow students, as Mr. Ne'eman apparently once did,  as a result of their disorders.  Some do not understand the dangers of daily life, or even understand language beyond a very simple level.  Some engage in serious self injury and some ... like 3 year old Daniel will not eat because of their autism disorder.  To all of these real people, real children, other people's children, with autism disorders, Obama nominee Ari Ne'eman says thou shalt not be cured for to do so is morally reprehensible.  And with his nomination, and eventual appointment, to a high profile US disability council Mr. Ne'eman's commandment will inevitably grow in influence.

Daniel's story, and it is not unique, is told at nottingham.co.uk:

"EATING is something most children take for granted – but it is something little Daniel Harrison may never do again.

The three-year-old from Carlton was diagnosed with autism two years ago after his parents noticed he was not developing as normal.

One of the side effects of his condition is a severe form of acid reflux, when acid from the stomach leaks up into the gullet.

It means Daniel went "up the wall" whenever he ate anything because of he associated eating with the pain of being sick.

He can now only take in food through a tube inserted into his stomach – and his parents say he may never eat normally again."

Movies, major media organizations and now the President of the United States, like to represent people with autism as high functioning success stories like university student Ari Ne'eman.  President Obama apparently agrees with Mr. Ne'eman's  opposition to curing autism disorders, with his view that autism is not a real disability, or he would not have nominated him to an influential disability council.  

The US President is embracing a young man who does not believe that Daniel and others who suffer from the serious, life restricting,  and often times dangerous, effects of autism disorders should be cured.  President Obama is joining Ari Ne'eman in saying to Daniel, his parents and others affected by the severe consequences of autism disorders ... thou shalt not be cured.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

[Highlighting added for emphasis - HLD]

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

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

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

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

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Is Obama Nominee Ari Ne'eman Flip Flopping on Autism as a Disability? But Not on His Opposition to Curing Autism?

Several autism blogs, including mine, have stated that Obama nominee Ari Ne'eman does not view autism as a disability.  In response Mr. Ne'eman  has apparently sent emails to Neurodiversity bloggers like Astrid and Lisa Jo Rudy stating that he does in fact view autism as a disability.  He has not apparently distanced himself from his positions opposing the right of parents to seek to cure their own autistic children. 

If Mr. Ne'eman now sincerely believes that autism is not a disability great but that is not what he said in the past.  And just as importantly he should make it clear that he does not oppose curing autistic children and in fact has no right to oppose the efforts of parents to seek cures for their children.

Following is a commentary I left in response to Mr. Ne'eman's statements at a Neurodiversity autism site authored by Lisa Jo Rudy, edited to fit the context of this comment:

1. Mr. Ne'eman's comments about autism not being a disability.

Ari Ne'eman in 2006 wrote an essay which is posted on the ASAN web site in which he in fact states that Autism is JUST a difference not a disease and NOT a disability:

"Difference Is Not A Disease"
...

"We see the world in a different way than our neurotypical peers (neurotypical is a word in the autistic community meaning those of the majority neurology). This does not imply a defect, but merely a difference — one that we have just the same right to as those of a different race, nationality or religion. Due to that difference in perception, we interact socially in different ways. Yet our quirks and eccentricities should be just as legitimate as the social skills of the mainstream.

.......


"We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not, in itself, disability; it becomes disability when it is not properly understood and accommodated. Someday, I hope the world will recognize that those who think in different ways should be welcomed.""

Ari Ne'eman, Nov 24 2006, ASAN web site

Mr. Ne'eman now claims through messages sent to Neurodiversity bloggers that he does not claim that autism is not a disability. His past writings say otherwise. In the best light Mr. Ne'eman  is flip flopping on the issue of autism as a disability. 

2, Mr. Ne'eman is not a Doctor.

And he does not have Autistic Disorder diagnosis and yet he purports to speak on behalf of people with autism, which would include my son with Autistic Disorder whom he has not met and with whom he has ABSOLUTELY nothing in common.

A person with Aspergers, unlike the 30-51% of persons with autism does not, by definition in the DSM, have an intellectual deficit. The 30-51% of autistic persons having an ID figure is taken from the CDC report on autism prevelance released today.

Mr Ne'eman has no obvious communication difficulties judging by his writings, his video performances and his numerous Big Media interviews.

Mr. Ne'eman has no social deficits judging by his ability to interact extremely well with Washington politicians.

Mr. Ne'eman has no reported behavior challenges that are visible in any of his appearances.

I have a son with Autistic Disorder and Mr Ne'eman has no right to speak on his behalf or say that my son's autism is JUST a difference not a disability. I was visiting autistic persons in institutional care in my home province of NB Canada long before Mr Ne'eman's media skills and connections launched his career as an "autistic". I have seen the reality of autism for those who are in fact severely autistic. Many are living lives dependent on others visited only by parents who eventually die. That is an autism reality that Mr Ne'eman's pontificating about autism being JUST a difference does not touch on.

3. Mr. Ne'eman's Opposition to Curing Autism

I assume that Mr. Ne'eman has not flip flopped on his declaration that WE, referring to persons with autism, do not want to be cured. Mr Ne'eman has no experience as a person with Autistic Disorder to even begin to understand the realities of life for those who end up living in institutional care. or wander off to freeze to death in snow storms, or drown in local pools, or like my son wander into automobile traffic obivious to the dangers to his safety (he was rescued by a good Samaritan, a "Neurotypical").

Autism disorders are not JUST differences as Mr. Ne'eman says to this day on the ASAN web site. They are for those with severe Autistic Disorder exactly what they are called ... Disorders . They are severe disabilities.

 Mr. Ne'eman does not have  the right to tell OTHER parents that they should not seek to cure their children of their very serious disorders.

Mr Ne'eman is not the first person with Aspergers or High Functioning Autism to declare that people like my son do not want to be cured. NO ONE has the right  to tell parents of other people's children not to seek cures for their children's autism disorders.

President Obama has done a great disservice to the autism communicty and will only divide the autism community further by appointing this person who is wobbly at best on whether autism disorders are disabilities and who opposes the right of autistic children to be cured of their disorder should a cure ever be found .... should the research to find a cure ever be undertaken.

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US President Barack Obama Opposes Curing Autism

In a huge set back for autistic children and their parents US President Barack Obama has nominated Ari Ne'eman, a university student with Aspergers Disorder,  for appointment to the US National Council on disabilities. Mr. Ne'eman is a staunch opponent of curing, or seeking cures for, autism. 

The appointment, in addition to signaling President Obama's opposition to curing autism is bizarre in that Mr. Ne'eman does not even regard autism as a disability.  As Jonathan Mitchell points out at Autism's Gadfly,  Mr. Ne'eman does not even view autism disorders as disabilities having written:

We see the world in a different way than our neurotypical peers (neurotypical is a word in the autistic community meaning those of the majority neurology). This does not imply a defect, but merely a difference — one that we have just the same right to as those of a different race, nationality or religion.The belief was that anyone society labeled "disabled" could only go so far. Sadly, these misconceptions had the potential to become self-fulfilling prophecies. When the expectation is that people of a certain type can only reach so far, they are not provided with the same challenges and opportunities that educators give mainstreamed students....

.....

We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not disability and someday, I hope, the world will recognize that those who think in different ways should be welcomed

Certainly difference is not a disability if you are a person with very mild Asperger's but for those persons with severe Autistic Disorder, some of whom freeze to death in snowstorms, drown in neighborhood pools, wander into traffic, bite their hands and chew their cheeks, bang their heads until bloody, starve themselves to death because of their intense aversion to many food tastes and textures or live their lives in institutional care; for many of these truly autistic persons, their difference is a disability. 

For the severely autistic their difference is a disorder, not a cool way to meet  a US President.

I am a Canadian with no right to pick a US President.  But like many people around the world I believed in the great promise of Barack Obama.

Now I am beginning to understand why so many are starting to reel from the great disappointment with the man who said Yes We Can and now has clearly signaled to families of autistic children that No You Can't.

There will be no autism cure sought during an Obama administration. Ari Ne'eman will see to that. 

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Woe Canada: Can Do American Politicians Address Autism Crisis While Harper & Ignatieff Do & Say Nothing

In the 11 years since my son, Conor, was diagnosed with autism the rates of autism diagnoses have skyrocketed in numbers that can not be explained entirely by the definition changes for pervasive developmental disorders (autism spectrum disorders) in the DSM. In the United States several American political leaders are taking steps to address the autism crisis while in Canada, the Harper government passes a budget which spends big bucks everywhere but offers nothing, zilch, for autism. And his de facto governing partner Michael Ignatieff also remains silent on autism issues; demanding nothing for autism as part of his party's continued propping up of the Harper party.

President Obama's commitment to addressing autism issues is well known:

Autism

President Obama and Vice President Biden are committed to supporting Americans with Autism Spectrum Disorders (“ASD”), their families, and their communities. There are a few key elements to their support, which are as follows:

• First, President Obama and Vice President Biden support increased funding for autism research, treatment, screenings, public awareness, and support services. There must be research of the treatments for, and the causes of, ASD.
• Second, President Obama and Vice President Biden support improving life-long services for people with ASD for treatments, interventions and services for both children and adults with ASD.
• Third, President Obama and Vice President Biden support funding the Combating Autism Act and working with Congress, parents and ASD experts to determine how to further improve federal and state programs for ASD.
• Fourth, President Obama and Vice President Biden support universal screening of all infants and re-screening for all two-year-olds, the age at which some conditions, including ASD, begin to appear. These screenings will be safe and secure, and available for every American that wants them. Screening is essential so that disabilities can be identified early enough for those children and families to get the supports and services they need.

Recently governors Doyle of Wisconsin and Corzine of New Jersey have spoken forcefully in support of initiatives to help autistic people and their families:

Governor Doyle in the Wisconsin State of the State Address:

First, we can make sure kids with autism get the treatment they need. Private insurers should cover autism; the treatment has been proven effective, and families deserve the right to see their children improve.

Governor Cozine's efforts on behalf of autistic people in New Jersey were described in a February 3, 2009 editorial on NorthJersey.com:

SINCE New Jersey has the highest incidence of autism in the nation, it's only fitting that our state should be a leader in supporting families facing this devastating diagnosis. The earlier the disorder can be identified and the more services that are available, the more positive the outcome. That is why Governor Corzine has made autism a high priority and has started a series of initiatives that are at various stages of progress. His efforts will inevitably be affected by the economic crisis and the state's financial woes. But as The Record's Elise Young reported this week, some success is already evident. An expanded and invigorated Governor's Council for the Medical Research and Treatment of Autism has been set up, along with an Adults with Autism Task Force and a training program for police, firefighters and emergency medical technicians on how to respond to those with autism. Perhaps the most promising and potentially effective initiative is the "early intervention" plan, which will result in evaluation guidelines for doctors and other health professionals who treat infants and toddlers. Guidelines have already been drafted and may be ready by spring.

Meanwhile back in Canada there is no mention in budget documents or discussions by Prime Minister Harper or Opposition Leader Ignatieff of autism or any commitment of funds to address Canada's autism crisis.

Too bad about that autism stuff eh?

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Vaccine-Autism War: The Empire Strikes Back

Whatever one's views about autism, vaccines and alleged government-"pharma" conspiracies it is clear that the recent IACC vote and surrounding events evidence an orchestrated, if panic stricken, attempt by the empire to quell dissent, to quash a simmering rebellion against official vaccine policies and prevent public inquiry into a possible vaccine-autism connection.

The clandestine IACC vote (the vote was not on the agenda and public members had no prior notice) reversed its own decision of the previous month authorizing vaccine-autism studies. In the earlier vote, as reported by David Kirby on the Huffington Post on January 5, 2009:

"In fact, two vaccine-autism studies have been approved by the IACC, which has proposed spending $16 million to:

1) "Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011. Proposed costs: $6,000,000

2) Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011. Proposed costs: $10,000,000

Additionally, under "Research Opportunities," the panel also endorsed this objective:

"Monitor the scientific literature regarding possible associations of vaccines and other environmental factors (e.g., ultrasound, pesticides, pollutants) with ASD to identify emerging opportunities for research and indicated studies."

For proponents of vaccine-autism research, this is a resounding victory. It covers much of what these advocates have been supporting for a number of years. It is also sure to enrage those who are opposed to such research."

Kirby's words were prophetic. On January 13, 2009 the New York Times published a one-sided promotion of Dr. Paul Offit's book Autism’s False Prophets, a pro-vaccine critique of those who argue that vaccines trigger autism disorders. The article portrays Dr. Offit as a pediatrician, ... a mild, funny and somewhat rumpled 57-year-old who carrys on a heroic struggle to protect children around the world despite anger, even death threats, from irrational parents. He is "a lightning rod, a figure who goes charging into the fray.”

Selective quoting is used to present anti-vaccine parents as parasites who should be disregarded by reporters in the same fashion as holocaust deniers, AIDS deniers and those claiming that the moon landing was faked. No reference is made to the position of Dr. Bernadine Healy (former NIH and American Red Cross head) that more research of a possible autism-vaccine connection should be conducted. (Fighting the Vaccine-Autism War, Leading Dr.: Vaccines-Autism Worth Study).

Still on January 13, 2009, the Age of Autism, a rebel stronghold in the vaccine-autism war, sensing something is amiss, questions the NYT puff piece on Offit and the timing of the article:

Do you have any idea how hard it is to get the NYT to mention your book? Let alone a book that came out over five months ago. Why the mollycoddling of Dr. Offit and his book? Why now?


Then, on the evening of January 13, 2009, a public representative on the IACC, Alison Singer, resigns from Autism Speaks "based on her intention to vote on certain Strategic Plan vaccine safety matters in a way that diverged from Autism Speaks' position on this issue." The timing of her resignation suggests that she knew the vote to reverse the IACC December decision to fund vaccine-autism research would be scheduled and would not allow for any media or internet examination of her resignation prior to the vote.

On January 14, 2009 the IACC votes to reverse its decision of a few weeks earlier:

to approve objectives relating to vaccine safety research as part of its deliberations for the Strategic Plan for Autism Research. The decision to debate removing these objectives was not posted on the meeting's agenda, nor were the public members given any forewarning that this section of the plan – which was resolved at the previous IACC meeting in December -- would be revisited. [ Autism Speaks Press Notice]

On January 16, 2009 Newsweek.com publishes an interview with Alison Singer in which Ms Singer declares in respect of a vaccine autism connection that "This Question Has Been Asked And Answered’. She states that dozens of studies have exonerated vaccines as a cause of autism. The dissidents who assert a vaccine autism connection are portrayed as a small number of people with very loud voices. As with the NYT and Dr. Offit, neither Ms Singer nor Newsweek make any reference to the critique of the epidemiological studies by Dr. Bernadine Healy or her view that more research of the vaccine-autism question is needed. Dr. Healy's comments about the limits of epidemiological studies or the continued presence of thimerosal in vaccines are not mentioned.

On January 20, 2009 President-Elect Barack Obama will be sworn in as President of the United States. The mainstream media which co-operated with the empire's campaign to quash dissidence on the vaccine-autism issue will be busy with that historic occasion. There will be little time, space or attention for a bunch of looney, irrational, anti-science parents led by an actress.

The empire has struck back. Will that end the matter? In the Lucas movies it did not. In the very real vaccine-autism war it is difficult to see how those who believe in, suspect, or have an open mind on the vaccine-autism issue will be persuaded by this orchestrated series of events.

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History

History is being made today.

Our good neighbors in the United States, and they are good neighbors, will finish voting today to elect their President and Vice President. The obvious historical element is that an African American is the Presidential nominee of one of the two major American political parties and a woman is the Vice Presidential nominee of the other party.

But history is also being made in a different sense. As a long time observer of American politics, living an hours drive from the American border and inundated by American media I watched with horror the events of 911. I was proud of my fellow Canadians who took in to their homes American travelers stranded when all flights across the US were ordered stopped that day. I was initially impressed with President Bush when he stood with the firefighters on the rubble of the World Trade Center towers and visibly displayed the courage that would help inspire everyone affected. I was equally impressed when he organized and spoke at an interdenominational gathering of religious leaders and helped restore calm, compassion and common sense which appeared to be disappearing in the United States.

Ultimately though I became dismayed by the militaristic take over of the American consciousness and way of life. Going after Al Qaeda in Afghanistan seemed like the right thing to do given the Al Qaeda perpetration of events on 911. Their Taliban hosts in Afghanistan also seemed like legitimate opponents and if Bin Laden took refuge in Pakistan then I believe it was, and still is, legitimate for the Americans to go after him and take him out. But the war in Iraq and the patently obvious falsehoods perpetrated by senior government officials, including President George W. Bush, to justify the invasion of Iraq, a country that had not attacked the US was extremely disturbing. So too has been the steady erosion of American civil liberties and the denial of legal rights to foreign visitors to the United States.

In 2002 Barack Obama, a young state Senator in Illinois spoke against the impending Iraq war at a time when few politicians had the courage to speak candidly about the dishonesty being perpetrated to justify the invasion of Iraq. His speech was, as described by many, stirring, and I have posted it here following my comments. The speech, as so many of his speeches, and debates and actions demonstrate a person of judgment and principle. Mr. Obama is a man of calm cool reflection who can rise to the occasion and stir people based on principle, on hope, not on the hatred and fear mongering tolerated and exploited by his opponents.

Obama impressed me when he defeated Senator Hillary Clinton, an outstanding figure in her own right, and sought to mend bridges broken during the primaries once he prevailed. He impressed me when he picked Sentor Biden as his running mate, not to gain electoral votes which the pick did not do, but to ensure that an experienced, knowledgeable voice, that would not hesitate to speak truth to power balanced the ticket and would be ready in the horrific event, that it was necessary, to assume the presidency.

Senator Obama impressed again with his calm, cool and collected response to the financial crisis that exploded onto the world's economic scene and dramatically altered the course of the US election. His response was in sharp contrast to the bizarre, quixotic response by Senator McCain, canceling media appointments, rushing to Washington, threatening a no show at the impending Presidential debate and pretending that he had any significant role to play in the hammering out of the bailout agreement reached in the US Congress. To paraphrase the US presidential campaign cliche I was very concerned that the erratic Senator McCain would be the one taking that 3 a.m. phone call in the White House with his finger hovering anxiously over the nuclear button.

My high regard for Senator Obama, hopefully President Elect Obama, has nothing to do with autism about which I usually write. My preference is based largely on the issues set out above. As a Canadian I do not vote in the US elections notwithstanding the huge impact such political decisions by our neighbors have upon Canadians. If I could vote though, beyond any doubt, I would be voting for Senator Barack Obama for President and Senator Biden for Vice President. I truly believe the world will be the better for it if they prevail as the incredible odyssey of this American Presidential election campaign draws to an end.

I believe the Obama-Biden team will win today. The election of the first African American president of the United States will make history. But history will also be made with the beginning of the end of the rampant, out of control, militarism that 911 allowed to occur, the takeover of the American economy, society and consciousness by unscrupulous corporate war profiteers and their allies in the US Congress and administration will have begun.

The 2002 speech by then Illinois state Senator Barack Obama opposing the Iraq invasion sought by President George Bush, Vice President Richard Cheney and Arizona Senator John McCain follows:

"I stand before you as someone who is not opposed to war in all circumstances. The Civil War was one of the bloodiest in history, and yet it was only through the crucible of the sword, the sacrifice of multitudes, that we could begin to perfect this union and drive the scourge of slavery from our soil.

I Don't Oppose All Wars

I don't oppose all wars. My grandfather signed up for a war the day after Pearl Harbor was bombed, fought in Patton's army. He fought in the name of a larger freedom, part of that arsenal of democracy that triumphed over evil.

I don't oppose all wars. After September 11, after witnessing the carnage and destruction, the dust and the tears, I supported this administration's pledge to hunt down and root out those who would slaughter innocents in the name of intolerance, and I would willingly take up arms myself to prevent such tragedy from happening again.

Opposed to Dumb, Rash Wars

I don't oppose all wars. What I am opposed to is a dumb war. What I am opposed to is a rash war. What I am opposed to is the cynical attempt by Richard Perle and Paul Wolfowitz and other armchair, weekend warriors in this administration to shove their own ideological agendas down our throats, irrespective of the costs in lives lost and in hardships borne.

What I am opposed to is the attempt by political hacks like Karl Rove to distract us from a rise in the uninsured, a rise in the poverty rate, a drop in the median income, to distract us from corporate scandals and a stock market that has just gone through the worst month since the Great Depression.

That's what I'm opposed to. A dumb war. A rash war. A war based not on reason but on passion, not on principle but on politics.

On Saddam Hussein

Now let me be clear: I suffer no illusions about Saddam Hussein. He is a brutal man. A ruthless man. A man who butchers his own people to secure his own power.... The world, and the Iraqi people, would be better off without him.

But I also know that Saddam poses no imminent and direct threat to the United States, or to his neighbors...and that in concert with the international community he can be contained until, in the way of all petty dictators, he falls away into the dustbin of history.

I know that even a successful war against Iraq will require a U.S. occupation of undetermined length, at undetermined cost, with undetermined consequences.

I know that an invasion of Iraq without a clear rationale and without strong international support will only fan the flames of the Middle East, and encourage the worst, rather than best, impulses of the Arab world, and strengthen the recruitment arm of al-Qaeda.

I am not opposed to all wars. I'm opposed to dumb wars. So for those of us who seek a more just and secure world for our children, let us send a clear message to the president.

You Want a Fight, President Bush?

You want a fight, President Bush? Let's finish the fight with Bin Laden and al-Qaeda, through effective, coordinated intelligence, and a shutting down of the financial networks that support terrorism, and a homeland security program that involves more than color-coded warnings.

You want a fight, President Bush? Let's fight to make sure that...we vigorously enforce a nonproliferation treaty, and that former enemies and current allies like Russia safeguard and ultimately eliminate their stores of nuclear material, and that nations like Pakistan and India never use the terrible weapons already in their possession, and that the arms merchants in our own country stop feeding the countless wars that rage across the globe.

You want a fight, President Bush? Let's fight to make sure our so-called allies in the Middle East, the Saudis and the Egyptians, stop oppressing their own people, and suppressing dissent, and tolerating corruption and inequality, and mismanaging their economies so that their youth grow up without education, without prospects, without hope, the ready recruits of terrorist cells.

You want a fight, President Bush? Let's fight to wean ourselves off Middle East oil through an energy policy that doesn't simply serve the interests of Exxon and Mobil.

Those are the battles that we need to fight. Those are the battles that we willingly join. The battles against ignorance and intolerance. Corruption and greed. Poverty and despair."

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Senator Obama Not Governor Palin Has Plan For Autism

In commenting on autism issues in the context of American politics I can only do so as an outsider, a Canadian with no vote, but keenly aware that American events can have a dramatic impact on Canada. I have followed American presidential elections closely since my grade 3 teacher put pictures of President John F. Kennedy on our classroom bulletin board and I remember hearing the horrific news of his assassination one year later. I am heavily biased toward the Democrats, and admire many of them - Ted Kennedy, Bill Clinton, Hillary Clinton, Joe Biden, Bill Richardson, Al Gore and Barack Obama. I still can not believe that Al Gore did not win in 2000.

With that declaration of bias again out in front though I am curious about Governor Palin's announcement yesterday that autism is an issue near and dear to her heart. Governor Palin has a nephew with autism. And that certainly identifies a personal connection to autism for the Governor but notwithstanding that personal connection what does she actually have in mind for autism programs? What plan, if any, does she have for autism? The answer, apparently, is none. The Governor spoke with KRNV News4's Shelby Sheehan:

"There are a lot of wasteful expenditures in the federal (government)," Palin said. "Let's get rid of those and put them into strengthening NIH (National Institutes of Health) and these other areas where we can help our kids with autism."

....

"Here's the difference between John McCain and our ticket and Barack Obama and Joe Biden," she said. "We don't just talk the talk, we walk the walk. And that's why in not just that first speech, but in every speech I give, I talk about being an advocate and a friend in the White House for our families who have members who have these special needs."

The WKNV online reports that Governor Palin did not indicate what expenditures would be cut and what autism programs would be funded in a McCain-Palin administration. Stating over and over that you are an advocate for autistic persons appears to be a clear example of talking the talk but does not demonstrate that Governor Palin is prepared to walk the walk as she claims. As the report indicates Governor Palin has no actual plan for how to help autistic persons and their families.

WKNV reports that Senator Obama has specified what action he would take when, sorry IF, he becomes President (my bias again) :) The Obama plan can be found in full at Obama 08 BARACK OBAMA: SUPPORTING AMERICANS WITH AUTISM SPECTRUM
DISORDERS. The elements of the Obama plan include:

1. Appoint Federal ASD Coordinator to Oversee All Federal ASD Efforts.
2. Fully Fund the Combating Autism Act and Federal Autism Research Initiatives.
3. Support Special Needs Education for Children with ASD.
4. Support Universal Screening.
5. Work Together.

Senator Obama, not Governor Palin, appears ready to walk the walk to help autistic persons and their families. Here in Canada it is not clear if Stephen Harper has even uttered the word "autism". The sweater PM has made it clear that a Harper government will do nothing to address Canada's autism crisis. Hopefully, if Senator Obama's historic presidency does come to be, he will have some positive influence on our Canadian Prime Minister with respect to autism issues.

On autism issues Canada is still looking for The Change We Need.

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John McCain Visits Facing Autism in New Brunswick

Republican Presidential candidate John McCain honored Facing Autism in New Brunswick with a visit today. Well, I understand the Senator is not a big internet user, and he has other things to do, so it was probably a junior staffer.

Still it was interesting to receive a visit from the McCain campaign to this humble Canadian blog. The campaign was interested in my comment Governor Palin As A Special Needs Advocate?
I hope they were not offended by my Barack Obama bias.

Below is the visit information provided by Statcounter:
If you blog them they will come.

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Governor Palin As A Special Needs Advocate?

Most Canadians follow American presidential politics with as much, if not more, interest than our own federal elections. Proximity to such a large, powerful, (and generally friendly), neighbor and the reach of American media make it fairly easy. Right or wrong it also seems that American politicians will go much further than Canadian politicians in stretching the truth and attacking opponents. While we may profess to disdain such behavior it is fascinating and we do watch. This year with the emergence of the charismatic Barack Obama I believe there has been even more interest here in Canada.

Now the emergence of Governor Sarah Palin as the Republican VP nominee also draws interest particularly for parents of children with disabilities. Governor Palin chose to have her youngest child knowing he would have Down Syndrome. As the father of a severely autistic 12 year old boy I can not imagine life without him. He has brought incredible joy. Under no circumstance would I have not wanted him to come into this world. But that is easy to say now. Governor Palin made her decision without yet knowing her child. Her decision to do so commands respect.

Governor Palin's decision to keep a Down Syndrome child gives her instant credibility on special needs matters. But at the same time as the father of an autistic boy I know that my wife and I have both had to devote vastly more time to his care and well being than we do for his older brother who was able to speak, converse, read and understand life at very early stages. I am not attacking Governor Palin but I find it difficult to understand her decision to take on the VP nominee challenge when her Down Syndrome child is only 4 or5 months old. And yes I would say the same thing if she were a man.

I have made career choices based on what is best for my children, and particularly for my autistic child who has special needs. I recognize that Governor Palin might have lots of family support to help during these challenging VP times but missing so much time with Mom could be tough for a special needs child during such a critical period of development.

What seems most puzzling about the idea of Governor Palin as a special needs advocate as she claims she will be are the policies she has practiced and will practice as part of a Republican administration. Jennifer Steinhauer and Amy Harmon have a balanced review of Governor Palin's history on disability issues in the New York Times. Alaska lacks many basic services for children with special needs although geography and remoteness are major contributors to that reality. Governor Palin did sign into law legislation that would increase funding for special needs although she had no role in its development, she simply signed it. She did actually cut spending for Special Olympics in half.

What really makes me wonder about Governor Palin's new mantle as a special needs advocate is the following excerpt from the NYT article describing past actions of the "Top of the Ticket" Senator John McCain:


The law, the Individuals with Disabilities Education Act, passed in 1975 with bipartisan support, called for the federal government to pick up 40 percent of the state cost of teaching children with special needs. The federal government pays less than half that, though more under the Bush administration than under President Clinton.

Mr. McCain voted to reauthorize the law, but voted against a measure, with nearly every other member of his party, to increase financing through a reduction in tax cuts for the wealthy. Mr. McCain has been a proponent of school vouchers, denounced by many advocates for children with special needs as draining public money away from special education programs; Ms. Palin is a school-choice advocate, her spokeswoman said.

Mr. McCain also opposes proposed federal legislation that would help pay for states to move people with special needs from state institutions into other living arrangements, but he has said he supports updating the Americans with Disabilities Act to offer more protections.

As I understand American politics it is the President, not the Vice-President, whose policies and priorities prevail in the White House. It is difficult to see how Governor Palin, whose own record on special needs children is mixed, will be able to forcefully advance their cause, particularly if to do so, would require reduction of tax breaks for the wealthy.

And like I said earlier, I have a difficult time seeing how a parent, male or female, could take on such a time consuming, all absorbing, challenge as running for Vice President of the United States of America while putting first the interests of a very young child with special needs. If Governor Palin would put that challenge ahead of dedication to her own young child I am very doubtful she would actually put the interests of special needs children high on her list of priorities.

Still, I don't get a vote and my opinion, as a Canadian, doesn't count for much. But I will watch with fascination as the process continues toward November.

Even as a Canadian whose opinion does not matter I should still disclose my bias : I believe that Senator Barack Obama represents the change we need in the United States ... and in Canada.

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Autism Advocacy and the Fierce Urgency of Now

I am not running for this office to fulfill any long-held plans or because I believe it is somehow owed to me. I never expected to be here, and I always knew the journey would be improbable. I’ve never been on one that wasn’t.

I am running because of what Dr. King called “the fierce urgency of now.” I am running because I do believe there’s such a thing as being too late. And that hour is almost here.

Barack Obama, quoted in Rolling Stone magazine , 11/03/07

Barack Obama appears to be an inspirational leader of the type not often seen in politics. But he has also borrowed from the great Martin Luther King one of the best phrases of his campaign "the fierce urgency of now". It is a point understood by parents advocating for effective early intervention for their autistic children, for a real education for their autistic children, and for decent residential care and life opportunities for those same children as they grow up and their parents grow old.

Time will not wait. And time will not be gentle if we wait. We must always seize the moment. Act now with urgency or nothing will get done and our autistic children will be the ones who suffer from our procrastination; or worse from our sweet surrender and failure to act at all.

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