Autism Speaks Rejects Questions About Views of New Board Member Robison

I have been appreciative of much of the work done by Autism Speaks in raising autism awareness and funding for autism research. I have also found some Autism Speaks decisions questionable. In particular, I disagree with Autism Speaks decision to provide research funding to Dr. Laurent Mottron who is ideologically opposed to curing autism and who works with anti-ABA activist Michelle Dawson. Reacting to criticism that Autism Speaks does not have a person with Autism on its Board Autism Speaks has responded by appointing a very high functioning person with an Aspergers Diagnosis. The appointment of a person with Aspergers to me represents exactly that ... the appointment of a person with Aspergers not Autistic Disorder not severe autism not low functioning autism.

I am concerned that Mr. Robison and Autism Speaks will, contrary to the wishes of many families with children with Autistic Disorder, move its autism research spending in a more anti-autism cure direction. I am concerned that, with its powerful media connections,  Autism Speaks is moving toward adopting the anti-cure positions of some "Autism" self advocates with Aspergers and High Functioning Autism at the expense of persons with low functioning Autistic Disorder. Autism Speaks has already cowered before  those who view autism as a "different way of thinking", those who oppose research aimed at curing  autism by disassociating itself as much as possible from the "I Am Autism" video produced by parents of autistic children.

I posted a comment on the official Autism Speaks blog guest blog from Mr. Robison asking two questions. The comment did not pass moderation and does not appear on the Autism Speaks blog site. This was the comment I posted:

Mr. Robison do you feel that as a very high functioning person with an Asperger's diagnosis you have any particular insight to offer on behalf of very low functioning persons with severe Autistic Disorder or should the persons who actually care for them and have legal guardianship speak on their behalf?


If I may ask a second question, do you support research aimed at finding cures for autism?

I do not object to the right of Autism Speaks to moderate comments on its official blog site. I moderate comments on this site to prevent spam, profanity, abusive, offensive language and off topic comments aimed at disrupting discussion.  I thought my comment questions were fair and reasonable in the context of Mr. Robison's guest comment introducing  himself on the Autism Speaks blog and I do not see anything offensive or disrespectful in my comments.  Apparently Autism Speaks disagreed.

I respect Autism Speaks' right to moderate its blog site and to reject my comment.  I am not going to throw a hissy fit over Autism Speaks decision to reject the questions I posed for Mr. Robison.

I will take it  though as a sign, a bad sign, about Autism Speaks willingness to address openly some of  the issues that concern me as a parent of a  low functioning  son with  Autistic Disorder. 

Autistic Persons You Don't See on Sitcoms, Reality Shows or Hollywood Movies .... or in the DSM 5

The CDFoakely videos present the realities of severe autism that you don't see on television or movies.

Persons who are severely autistic do not attend colleges for gifted youths, intervene as "autistics" before the Supreme Court of Canada to oppose families seeking government funded ABA interventions for their own children, pose for interviews with CBC, CNN or the New Yorker Magazine or hob nob with Washington politicians and bureaucrats.

Their existence, if they survive snow storms in Nova Scotia, being lost in the woods of Northwestern Wisconsin for a week, being physically abused by  some staff members in a Long Island residential home, living on a hospital ward in New Brunswick Canada, or jumping from an ambulance in South Carolina , is not always pretty and does not usually attract beautiful Hollywood actresses to portray "autism" for the world.

It is the families of the severely autistic who know their realities and speak for them, not the very  igh functioning IT professionals, researchers and  politically vocal university students who declare that autism is a different way of thinking and should not be cured.  It is the families who, day in and day out, care for, and love, their severely autistic family members who know and understand  the realities of severe autism. 

Severe autism may ultimately be whitewashed entirely from the public consciousness by Hollywood movies and the DSM 5.  If severe autism is not obliterated entirely from  public awareness it will be because even the mainstream media, at least at the local level, does report the tragic consequences that sometimes strike the severely autistic.   And because courageous family members will tell the world, and keep telling the world,  the truth about severe autism.

CDFoakley videos continue that effort to courageously portray some severe autism realities. You can find them on Youtube. And they are featured on the sidebar here at Facing Autism in New Brunswick. From CDFoakley "Persons You Don't See on Sitcoms, Reality Shows or Hollywood Movies":

For Conor There Is Fun And Then There Is Circle Place Fun

Conor had a great day trail walking with Dad this morning but his favorite part or our hike came when we visited the Circle Place; the Lawrence Amphitheatre.  Conor loves to play  balancing games on the curved cement seating rings of the amphitheatre.  We have an early spring.  Whether it is a false spring or not remains to be be seen, but Conor took advantage of the great weather to have fun at one of his favorite places - the Circle Place.

autism

Absolutely Awesome in Fredericton Today

Yesterday was a great day. Today though was awesome. Being Saturday I was able to get out for a couple of good walks. Conor got out too; walking and playing in the back yard. .

autism

Trails Start to Open in Fredericton on a Beautiful, Almost Spring, Day

It was a beautiful blue sky, "almost spring", day in Fredericton today. The trails are starting to open up for walking and I had to take the afternoon off and enjoy the outdoors. Conor wasn't keen to do any trail walking today but I am going to push him a bit harder to get out with Dad tomorrow if the weather is any where near as nice as it was today.

autism

Autism Jabberwocky Questions Michelle Dawson's Understanding of Evidence Based Medicine Concept

Autism Jabberwocky one of the best, and best written, autism blogs on the internet features an excellent commentary  which highlights an apparent lack of understanding by anti-ABA ideologue Michelle Dawson of the concept of evidence based medicine.  As explained by MJ at Autism Jabberwocky in Michelle Dawson Writes A Letter.

:
"Evidence-based medicine is the idea that all medical decisions should be based on the best scientific evidence that is available.  The concept is really very straightforward. You take the results that research has provided, rank them according to the quality of the information, and use that ranked evidence to decide what the best course of treatment is."

Making medical decisions as to appropriate treatment based on the best available evidence seems simple enough to grasp.  It is an eminently practical concept.  People can not just wait  decades  for perfect research  studies to be conducted under perfect conditions (which may never occur).  They have to make  treatment decisions based on the best evidence of safe and effective treatment  available at the time they are confronted with a medical condition requiring treatment.

It is one thing for Michelle Dawson, researcher, to hold out for an ideal and perfect study that may never happen.  It is another thing altogether for parents trying to help their autistic children overcome their disorders and live the fullest, happiest life they can. They have to make decisions to help their children based on the state of knowledge at the time.

MJ summarizes concisely and accurately the status of ABA as an evidence based, effective treatment for autism disorders and the curious nature of Michelle Dawson's apparently irrational opposition to ABA: 

"One of the few treatments for autism that does have a solid evidence base is ABA (Applied Behavior Analysis).   While it is not guaranteed to work for everyone, the available evidence shows that it can be an effective tool to help teach children with autism and is almost universally recommended.

That is, with the exception of the universe of Michelle Dawson.  As I have pointed out before, Ms Dawson has a real problem with ABA. She seems to have an almost irrational obsession with proving that ABA is somehow unethical or immoral to use on children with autism. She would tell you that she has ethical concerns and that there is very little evidence that ABA works.  However, Ms Dawson is almost universally alone in her opinion."

Michelle Dawson is not completely alone though.  Her anti-ABA views are shared by her collaborative colleague Professor Morton Ann Gernsbacher.  Gernsbacher's anti-ABA views have been scathingly reviewed by Professor Edward K.  Morris of the University of  Kansas who commented on the harm caused by Gernsbacher's misrepresentation of ABA:  A Case Study in the Misrepresentation of Applied Behavior Analysis in Autism: The Gernsbacher Lectures.

Michelle Dawson has spent her post Canada Post career  trying to tarnish the public perception of ABA as an effective, beneficial autism treatment. To my knowledge she has never explained what autism treatments, if any,  do meet with her approval.

Fortunately  the serious and credible reviews of autism interventions that have been done over the past decade and a half do not appear to give her views, or those of her colleague Morton Ann Gernsbacher,   any weight or mention.

autism

Autism Not a Gift for South Carolina Boy Who Jumped to His Death from a Moving Ambulance

"Shelley Hodge said nobody believed her when she protested her 16-year-old son’s release from a state psychiatric hospital, warning that he could hurt himself or someone else. That teen, Ryan Emory of Greenville, was being driven back to the same hospital Sunday when he loosened a gurney’s straps and jumped out of the back of an ambulance as it traveled down Interstate 85, authorities said.

Emory later died at Greenville Memorial Hospital "

- Greenville Online.com, Autistic Greenville High student dies after jumping from ambulance   

The Greenville Online describes an autism reality unlikely to be portrayed on CNN, or  the larger mainstream media generally,  which prefers to focus on feel good stories about high functioning persons with autism and Aspergers and generally ignores the  harsher realities confronting persons with low functioning autism disorders.  Thanks to Claire Danes and the producers of the recent biopic about Dr. Temple Grandin the misleading image of autism as nothing more than a different way of thinking will likely be pushed more and more by a mainstream media that has no desire at all to burden its viewers and readers with darker tales of the dismal life prospects of those for whom autism is a serious disorder.

CNN has posted a video clip of Temple Grandin on its web site opinion page under the title Temple Grandin: why autism is a gift. In the video Dr. Grandin describes yet again her way of looking at the world and, apart from describing her way of thinking in very positive terms, she also offers the widely circulated opinion that Einstein and Mozart were autistic; a claim based purely on speculation .  Many parents of autistic children would disagree with Dr. Grandin and CNN, which has in the past fawned over Amanda Baggs,  a person with an autism disorder diagnosis who once attended a college for gifted youth . Many parents, including me, love our children and find great joy in them,  but live with the reality that our children are not Dr. Temple Grandin,  that  they are much more severely affected by an  autism disorder which  will restrict and impair their lives.  For the sake of our children, we have to be brutally honest when describing their condition to a world that does not always want to hear about the realities confronting those most severely affected by autism disorders.

The Greenville Online article reports that Shelley Hodge said nobody believed her when she protested her autistic 16-year-old son’s release from a state psychiatric hospital, warning that he could hurt himself or someone else:

"The last six months have been particularly difficult, Hodge said.

Emory became more aggressive lashing out at relatives and others, she said. He was in and out of hospitals for fainting spells and his behavior. 

Hodge said that when the psychiatric institute released Emory, she protested plans to send him home.

“I’m like, ‘He’s 250 pounds. I’m afraid for his safety and mine,’”

“And I wrote that on the discharge plan. Hodge said she believed her son’s troubles went beyond autism and that he needed a thorough evaluation and to be in a controlled environment with “24-7 care.”

A state mental health worker told her Emory’s needs weren’t critical enough, she said

(Highlighting added - HLD)

The media, and health care authorities, don't always put much weight on the information provided by parents of children with autism disorders.  A world that  prefers to see autism as just another way of thinking, as the way of  Einstein and Mozart, does not always listen to parents who claim that their autistic child suffers from a serious disorder which causes harm to them and others. Shelley Hodge tired to tell them but it appears that no one listened.

Autism may be a gift for Dr. Temple Grandin. For others, like Shelley Hodge's son Ryan Emory, it is a disorder which can restrict their lives .... and even end them at an early age. You can read more fully about Ryan Emory at Greenville Online. You are unlikely to see his story  on CNN.

autism

Autism Vaccine Myth Busting: Thimerosal Is Still Used In Vaccines

One of the myths pushed in the mainstream media is that thimerosal, the mercury preservative used in vaccines, has been removed from vaccines.  That position simply is not true. 

The recent H1N1 panic showed that health authorities and pharmaceuticals still push vaccines containing thimerosal when it suits them.  The Ipswich Massachusetts Chronicle web site on  February 2, 2010 advertised immunization clinics for February 16 and 25, 2010 for thimerosal containing H1N1 shots:

"Only the injectable (shot) form of the H1N1 influenza vaccine will be used.


Participants should wear a shirt with loose0fitting sleeves or short sleeves to the clinic since the injection will be given in the upper arm.


Just like the seasonal flu vaccine, many formulations of the H1N1 vaccine contain a preservative called thimerosal. The vaccine that will be used at the clinic contains thimerosal."

Here in New Brunswick Canada the H1N1 (Swine Flu) vaccine also contained thimerosal and adjuvants and which were declared safe by our provincial health authorities as reflected in this  October 8, 2009 NB government news release. Of particular note, our provincial health authorities declared that thimerosal does not cause autism and is safe to give to pregnant women, one of the high priority groups targeted to receive the H1N1 shot during the fall H1N1 Pandemic/Panic:

• There have also been reports and public speculation about the safety of the H1N1 vaccine. The contents of the H1N1 vaccine will protect against contracting H1N1. The included additives and preservatives are there to help the vaccine work, and are not cause for alarm.
• As a multi-dose vaccine, the H1N1 influenza vaccine will contain a mercury-based preservative called thimerosal to prevent contamination of the vaccine by serious infectious agents from the growth of bacteria. Thimerosal also has a stabilizing effect on the vaccine, ensuring its effectiveness.
• The seasonal flu vaccine and most hepatitis B vaccines are also multi-dose vaccines, and thimerosal is added during the manufacturing process to maintain sterility of the vaccine.
• There is no safety reason to avoid using vaccines containing thimerosal. The best available scientific evidence to date shows no link between vaccines containing thimerosal and any adverse health condition, including neurodevelopmental disorders such as autism.
• The National Advisory Committee on Immunization (NACI) has reviewed the safety of thimerosal and concluded that, "There is no legitimate safety reason to avoid the use of thimerosal-containing products for children or older individuals, including pregnant women." International bodies, such as the World Health Organization (WHO) and the U.S. Food and Drug Administration, share this opinion.
• Most of the H1N1 vaccine available in New Brunswick will also contain an adjuvant. An adjuvant is a substance that is added to a vaccine in order to boost an individual's immune response. It also means that less of the virus, or antigen, is needed to make a dose of the vaccine. Unadjuvanted vaccine has no booster element, and more antigen is needed to create this kind of vaccine.
• By developing an adjuvanted vaccine, Canada has used less of the virus material (antigen), allowing us to immunize more people in a timely manner.
• Adjuvants are not new. Many commonly used vaccines in Canada contain an adjuvant. Adjuvants have been used for several decades to boost immune response to vaccines. However, adjuvants have not previously been used with influenza vaccines in Canada.
• The WHO has indicated that it has no special concerns about the safety of adjuvanted H1N1 vaccines in general.

The WHO is now under scrutiny for its role in pushing the H1N1 panic button.  And not everyone shares our NB officials' unquestioning faith  that thimerosal does not play a role in causing autism particularly when given to pregnant women.  Dr. Bernadine Healy, a highly respected former US National Institutes of Health Director has stated several times that the issue of a thimerosal autism connection is still an open question. She has made particular reference to the possible effect of the mercury preservative thimerosal o the fetuses of pregnant women:

"thimerosal crosses the placenta, and pregnant women are advised to get flu shots, which often contain it. Studies in mice suggest that genetic variation influences brain sensitivity to the toxic effects of mercury. And a primate study designed to mimic vaccination in infants reported in 2005 that thimerosal may clear from the blood in a matter of days but leaves inorganic mercury behind in the brain."

Former NIH Director Dr. Healy's concerns do not appear to have been taken seriously by public health authorities during the great H1N1 Swine Flu scare of 2009.

autism

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.

autism

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,  a 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.""

- Expert: H1N1 Vaccines Do Not Contain Mercury

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. 

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:

Proposed autism diagnosis changes anger "Aspies"

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. 

autism

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