Wednesday, December 31, 2008

A Significant New Blog - Life With A Severely Disabled Kid

This comment is a shout out for a promising new disability blog, one that doesn't subscribe to the feel good ideology that dominates internet blogs and mainstream media features about disabilities. In Canada it is so bad that the CBC outrageously included on one of its recent "autism is beautiful" productions the Toronto mother of an autistic child, art gallery curator, and blogger whose blog "the Joy of Autism" actually promotes the notion that parents should celebrate their autistic children's neurological disorders. Talking about treating or curing autism disorders just doesn't cut it in Toronto's, or the CBC's, trendier social circles. Life With A Severely Disabled Kid promises not to follow this trendy, but misguided, ideology , focusing instead on the realities faced by severely disabled children and their carers.

Claire is the owner of the Life With A Severely Disabled Kid and her Blogger profile makes her perspective crystal clear:

Claire

Gender: Female

Industry: Education

Occupation: always at home

Location: smallish town : Ontario : Canada

About Me I have a B.A. and M.A. in Religious Studies and a Montessori Diploma (0-6 years)My interest in "blogging" comes from a growing frustration with the invisibility of caregivers of and people with severe disabilities. Of particular interest: inclusion in schools...a very bad trend for the severely disabled.

Welcome to the blogosphere Claire!




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My 2009 Promise To Non-famous Persons With Autism Disorders

To the persons diagnosed with autism spectrum disorders who are not famous this autism dad wants you to know that I will not forget you in 2009.

And I am not alone. Parents, family members, carers and professionals across Canada and the United States will continue to fight for Applied Behavior Analysis intervention for autistic children and adults because of the incredible volume of research demonstrating its effectiveness in helping you make real gains in your life. And researchers and parents with common sense will continue looking for answers as to the cause, and possible cures, for the autism disorder that restricts your abilities to participate fully and independently in all aspects of life. We will fight for you, and alongside you, for decent residential care for all autistic youths and adults.

You have, unlike Albert Einstein, an actual autism spectrum disorder (Pervasive Developmental Disorder) diagnosis, but you will never receive a small fraction of the amount of time and attention that is devoted to speculation that Mr Einstein and other historical geniuses and talents were autistic. You may never pose for articles in New Yorker magazine, or tell breathless, gullible, CBC and CNN reporters that persons with autism disorders do not want to be cured. You probably did not attend a college for gifted youth and you probably do not work as a researcher with prominent neuroscientists and psychologists.

You may live at home, or in a community residential facility. You may live in full institutional care. You may or may not be able to read, and understand, this promise. If you can not then I hope that someone, a parent who loves you, a professional carer who helps you each day, will communicate the message to you in a way that is meaningful to you. Not so much that I personally will not forget you, but that they will not; they will be there for you and they will be focused on you and your needs. They care about you.

And in 2009 this father of a boy with autistic disorder will continue the fight on my son's behalf and on behalf of those of you who DO seek a fuller life through common sense acceptance of the realities of autism disorders, through evidence based interventions, through research into the causes and possible cures of autism disorders. The fight will continue for decent, autism focused residential care facilities.

You are not famous but in 2009 you will not be forgotten. This I promise you.




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Tuesday, December 30, 2008

Autism-Vaccine Connection? The Question Is Not Settled, All The Studies Have Not Been Done

In New MMR and autism study: no correlation my friend Kev, at Left Brain/Right Brain, has seized upon an English abstract of a Polish study to state that "there is no correlation between autism and MMR. Neither at ‘general’ ASD level, nor at specific ‘severe’ level." I do not read Polish in which the study itself is written, and apparently neither does Kev, but he felt comfortable in using this study to help justify mocking, in offensive terms, those who believe that there is an autism-vaccine connection. (I personally do not believe a vaccine-autism link has been established on the evidence but I do not think any such connection can be ruled out on the basis of the studies to date). Kev asked this question:

"Do we really need to keep on churning out results and studies until every last person on the earth gets the point? Or do we cut our losses, accept that there will always be some idiots who will never get it and…move on….to a research future where we can get back to thinking about autism, how we can help autistic people to live their lives and hopefully a future where children don’t die of vaccine preventable diseases."

Personally, I find the reference to people as "some idiots" offensive towards persons with actual cognitive impairments, learning disabilities and severe autistic disorders. It is equally offensive to use such attacks as a means of preventing rational discussion of controversial issues. In somewhat more polite language some commentators on that opinion piece stated:

1. "One of my resolutions for the new year is to say, enough, let the AOA’s have the mercury/vaccine talk, and onward for those of us who know the question is settled"

kristina (Kristina Chew, Ph D, classic literature)

2. yet another study that fails to demonstrate a link. i doubt that the Mercury Militia will acknowledge defeat here. tough. they like to look like idiots? then let them.

David N. Andrews, M. Ed. (Distinction)

3.All of the studies in the world won’t convince some people...

Jen

Notwithstanding the brilliance of Kev and David N. Andrews, M.Ed.(Distinction) I am sure that even they can not truly consider Dr. Bernadine Healy, cardiologist and former head of the National Institutes of Health (NIH) and the Red Cross to be "an idiot" as they described those who do not consider the vaccine-autism issue closed. In addition to that career background Wikipedia indicates that Dr. Healy :

"was the top student of her high school class at Hunter College High School. Healy then attended Vassar College and graduated summa cum laude with a major in chemistry and a minor in philosophy in 1965. She was one of only ten women out of 120 students in her Harvard Medical School class. In 1970 she graduated with her MD cum laude. For Healy's post graduate training, she stayed in the Washington, D. C. area. She completed her internship and residency training in cardiology at Johns Hopkins."

Dr. Healy has pointed out that, contrary to the belief of Kev and his gang at Left Brain/Right Brain, the question of a possible vaccine autism connection is not closed and "all the studies in the world" have not been done". See her statements in Fighting the Autism-Vaccine War, US News & World Report, April 10, 2008 :

“vaccine experts tend to look at the population as a whole, not at individual patients. And population studies are not granular enough to detect individual metabolic, genetic, or immunological variation that might make some children under certain circumstances susceptible to neurological complications after vaccination.

....

There is no evidence that removal of thimerosal from vaccines has lowered autism rates. But autism numbers are not precise, so I would say that considerably more research is still needed on some provocative findings. After all, 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.

The debate roils on—even about research. The Institute of Medicine in its last report on vaccines and autism in 2004 said that more research on the vaccine question is counterproductive: Finding a susceptibility to this risk in some infants would call into question the universal vaccination strategy that is a bedrock of immunization programs and could lead to widespread rejection of vaccines. The IOM concluded that efforts to find a link between vaccines and autism “must be balanced against the broader benefit of the current vaccine program for all children.”

Wow. Medicine has moved ahead only because doctors, researchers, and yes, families, have openly challenged even the most sacred medical dogma. At the risk of incurring the wrath of some of my dearest colleagues, I say thank goodness for the vaccine court.”

Following is the Sharyl Attkisson/CBS interview of Dr Healy:



As I said earlier I have never claimed that vaccines cause autism. But the attempt to suggest that the question is closed is simply an attempt to stop examination of what is an important and controversial issue. If some cases of autism are caused by maternal exposure to thimerosal containing vaccines or by any other route, or if some subset of children are more vulnerable to the potential negative effects, including autism, of vaccines than research should be conducted to confirm or refute those possibilities.

Only when the research is done will the autism/vaccine question be settled.




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Monday, December 29, 2008

2008 Autism Blog Comment Of The Year


Over the past 30 years, several thousand published research studies have documented the effectiveness of ABA across a wide range of:
  • populations (children and adults with mental illness, developmental disabilities and learning disorders)
  • interventionists (parents, teachers and staff)
  • settings (schools, homes, institutions, group homes, hospitals and
    business offices), and
  • behaviors (language; social, academic, leisure and functional life skills,
    self-injury, and stereotyped behaviors)
- CARD blogsite, What is ABA?, December 15, 2008

Facing Autism in New Brunswick's 2008 Autism Blog Comment of the Year award goes to the Center for Autism & Related Disorders Inc. blog site for its comment "What is ABA?" The CARD comment comes from professionals, and an organization, that actually works with and helps autistic children from all points on the autism spectrum. It should help dispel the misinformation perpetuated about ABA and bring to the attention of parents of newly diagnosed autistic children one of the most well researched, effective, means of for helping their children.




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Sunday, December 28, 2008

Michelle Dawson, ABA and Autism in 2009

I read recently still more anti-ABA commentary from Ms Michelle Dawson, a long time crusader against government provision of Applied Behavioral Analysis for autistic children. Together with her colleague, Dr. Laurent Mottron, she has appeared as an "autistic" before the Supreme Court of Canada and before a Canadian Senate committee examining funding of autism treatment to oppose government funding of ABA treatments for autistic children.

Ms Dawson also comments frequently on the internet, and in the mainstream media, to speak on behalf of "autistics" and to advocate against ABA for autistic children in Canada. Ms Dawson takes great pleasure in explaining how the professionals who contribute to the American Academy of Pediatrics, the MADSEC (Maine) Autism Task Force, the New York State Department of Health, the Association for Science in Autism Treatment, and any of the professionals who actually work with autistic children, including heaven forbid, low functioning autistic children, are wrong about ABA and its effectiveness in helping autistic children make substantial, sustained gains as summarized in 2007 by the AAP:

Applied Behavior Analysis

Applied behavior analysis (ABA) is the process of applying interventions that are based on the principles of learning derived from experimental psychology research to systematically change behavior and to demonstrate that the interventions used are responsible for the observable improvement in behavior. ABA methods are used to increase and maintain desirable adaptive behaviors, reduce interfering maladaptive behaviors or narrow the conditions under which they occur, teach new skills, and generalize behaviors to new environments or situations.

ABA focuses on the reliable measurement and objective evaluation of observable behavior within relevant settings including the home, school, and community. The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–40


Given the well documented record of sustained gains reported for autistic children using ABA, as reported by such credible agencies, it is difficult to understand the opposition by Michelle Dawson and her colleague and supporter Dr. Laurent Mottron. The writings of neither of these two staunch opponents of ABA disclose any first hand involvement with ABA.

Nor is it clear whether they have any direct contact with severely impaired autistic persons, you know, the ones who do NOT appear before legal, political and media entities on a regular basis, the people, like my son who require 24 hour supervision, the ones living in institutional care, THOSE "autistics", the ones whose existence Dr. Mottron and Ms Dawson rarely, if ever, mention. Dr. Mottron publishes several papers a year in learned publications about autistic savants and persons with Aspergers and High Functioning Autism. (With 2009 literally around the corner look for more papers from Dr. Mottron on autistic savants and the charcteristcs of superior autistic intelligence). Dr. Mottron is OK with Canadian tax dollars going to support his "research" into savant intelligence but opposes funding of ABA interventions for autistic children even those with limited communications, the "autistics" who do not appear in his frequently published papers.

Michelle Dawson, in addition to being a researcher working with Dr. Mottron, and assisting his investigations of high functioning autism, is also herself an "autistic". Affidavits filed by Dr. Mottron and Ms Dawson, then a postal worker, in support of her appearance as an intervenor before the Supreme Court of Canada describe her as an autistic person or autistic individual. She also states that she was diagnosed with "autism". Her specific autism spectrum disorder, or pervasive developmental disorder, is not expressly mentioned in either affidavit.

In her affidavit Ms Dawson, despite a slim affidavit record of her own "autism", challenged the legitimacy of the parents and professionals who appeared in the proceedings:


20.

In addition, no autistic individuals testified or participated in the process. Yet there are autistic individuals who could have coherently and cogently explained the realities of autism, with both its benefits and weaknesses to the courts.


21.

The courts were only left with the perspective of parents and the state in what became an argument over who was responsible to assume the costs of dealing with the disability;


22.

I believe that the perspective I could bring to this Court would be of assistance to the Court and allow it to have a fuller understanding of the issues before it;


23.

I know of no association or group seeking to intervene in these proceedings who could bring the true perspective of autistic individuals;


24.

While several groups and associations exist to promote the rights of autistic individuals, in my experience, they are usually dominated by parents and professionals, and very seldom have any input from autistic individuals, even when the autistics seek to participate in these organizations.


Ms Dawson intervened in Auton, according to her solemnly declared affidavit, because she offered the true perspective of autistic individuals. She made this solemn declaration without stating her specific autism spectrum disorder, elaborating on why she herself was not diagnosed until she was an adult in 1993-4, or discussing any differences that might exist between "autistics" who can appear before the Supreme Court and those who struggle with basic language. Nor did she explain in her affidavit how she could speak on behalf of those autistic children and adults who, unlike her, cannot speak at any significant level.

A few years ago I had the pleasure of two very brief telephone conversations with Ms Dawson. She contacted me because I was at that time the President of the Autism Society New Brunswick and she was interested in obtaining a copy of a document prepared for the ASNB by a Universite de Moncton law professor pertaining to autism and the Canadian constitution. I was surprised later, when learning of her intervention in the Auton case in the Supreme Court of Canada, that she purported to speak on behalf of so many other autistic persons; given her obvious abilities contrasted with the severe challenges faced by so many autistic persons, including my son.

On reflection I also remembered our brief conversations and the fact that despite taking on this self appointed representational role on behalf of "autistics", including my son, she had never asked me, during those conversations any questions about autistic people in New Brunswick or the health, education or living conditions of persons with autism spectrum disorders in New Brunswick. She disclosed no obvious interest in informing herself, while talking to the then President of ASNB about conditions faced by autistic persons in New Brunswick. (Nor did Ms Dawson ask whether we had any persons with an Autism Spectrum Disorder serving on our Board of Directors)

Of course Ms Dawson's failure to ask me any such questions now makes perfect sense having read her affidavit. As a mere parent of an autistic child I had no information that would be of any value to Ms Dawson who after all is an "autistic". Despite the responsibilities that nature, our society and our laws bestow upon parents to care for and nurture our children, we are not qualified to represent our autistic children's interests in Ms Dawson's view. Despite living with them, caring for them, loving them and sacrificing for our children, despite seeing their challenges and struggles up close and helping them overcome those challenges we can not possibly offer the perspective that Ms Dawson, a total stranger with no commitment to them or responsibility for their well being, can offer because she is after all an "autistic".

My son is severely "autistic". His diagnosis is autistic disorder, assessed with profound developmental delays. He can not speak for himself in ordinary daily interaction let alone before the Supreme Court of Canada. The information I just presented is supported by professional assessments and is more information than Michelle Dawson supplied in her leave to intervene affidavit in Auton. Michelle Dawson, whatever her diagnosis, has nothing in common with my son and does not, and never did, bring his "perspective" to courts, legislative bodies or in her media appearances.

Michelle Dawson will continue in 2009 to tell the world that the AAP, the US Surgeon General, the New York State Department of Health, the MADSEC (Maine) Autism Task Force, the Association for Science in Autism Treatment, Dr. Mickey Keenan of the University of Ulster, Dr. Doreen Granpeesheh of the Center for Autism and Related Disorders, Dr. Alan Harchik of the May Institute, Dr. Paul McDonnell, Professor Emeritus (Psychology), Dr. Ivar Lovaas, and literally thousands of other health care professionals and researchers are all wrong about the effectiveness of ABA in helping autistic children make sustained substantial gains in intellectual and social skills.

Meanwhile in 2009, Michelle Dawson and Dr. Mottron will undoubtedly continue to receive Canadian tax dollars for their research into, and publish papers about, autistic savants, Aspergers and high functioning autism. Curiously omitted from their scholarly works will be the severely autistic, those with cognitive deficits, those who injure themselves and others and live lives of dependency and solitude after the parents and others who actually care for them are gone.

If past is prologue Ms Dawson will still not ask about those "autistics" much less fortunate than her, like my son, or other autistic persons in New Brunswick, or elsewhere. Ms Dawson will continue in 2009 to ignore the existence of intellectually impaired, communication challenged, severely autistic persons on whose behalf she purports to speak. And she and Dr. Mottron will continue to oppose government funding of ABA for autistic children.




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Saturday, December 27, 2008

Possible Autism Treatment? Israeli Scientists Use Stem Cells To Reverse Learning Disorders In Mice

Israel21c reports that Israeli scientists have succeeded in using stem cells to revere learning deficits in the offspring of pregnant mice who were exposed to heroin and the pesticide organophosphate. The article by Israel21c staff speculates that the findings could ultimately lead to significant breakthroughs in treating learning disorders.

Researchers, including Prof. Joseph Yanai and Prof. Tamir Ben-Hur of the Hebrew University-Hadassah Medical School and Prof. Ted Slotkin at Duke University in North Carolina, used direct neural stem cell transportation into the brains of the affected mice offspring with marked results:

The recovery was almost 100 percent, as proved in behavioral tests in which the treated animals improved to normal behavior and learning scores after the transplantation. On the molecular level, brain chemistry of the treated animals was also restored to normal. ...... The scientists found that before they die the neural stem cells succeed in inducing the host brain to produce large numbers of stem cells which repair the damage. These findings, which answered a major question in the stem cell research community, were published earlier this year in the leading journal, Molecular Psychiatry.

The abstract for the article can be viewed, and the article purchased at Molecular Psychiatry. The citation for the article is Molecular Psychiatry (2008) 13, 222–231; doi:10.1038/sj.mp.4002084; published online 18 September 2007.

Neither the Israel21c article nor the study abstract mention autism disorders specifically but they do refer to potential stem cell treatment generally of neural and behavioral birth defects and disorders.




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Friday, December 26, 2008

Boy With Balloons by Stephanie Lynn Keil (Inspired by Conor Doherty)


The image above is of the painting, "Boy With Balloons", created by artist Stephanie Lynn Keil who is herself autistic.

Stephanie informs me that the painting was inspired by my buddy Conor.

On behalf of Conor and our family I thank you Stephanie. We are very moved by this work and will always treasure the image and knowledge that Conor inspired the painting.

Stephanie's art is featured on her blog site Stephanie Lynn Keil.




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Thursday, December 25, 2008

Oh No, Conor Loves Mama Mia!

Christmas morning was a lot of fun with everybody opening their gifts.

As a grown up kid I couldn't wait to see one of the gifts we got for Conor - "Horton Hears A Who" in high definition (Blue Ray) featuring Jim Carrey as Horton and Steve Carell as the Mayor of Whoville. Much to my chagrin though Conor really liked one of Mom's gifts - the Mama Mia! video. Conor's Mom saw Mama Mia! a couple of times in the theatres and I have heard ABBA around the house incessantly since then.


With Conor enjoying the Mama Mia! video I am in serious trouble. No amount of sniveling and whining can help me now. Conor has Dad wrapped around his little finger. If he chooses to watch Mama Mia! then I will have no choice. Peace and quiet, my sanity, will be Slipping Through My Fingers .... S.O.S.





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Wednesday, December 24, 2008

This Christmas This Autism Dad Says Thank You

I started this blog as an extension of the autism advocacy in which I have been engaged for the past 10 years. Here in New Brunswick, Canada parents who were active autism advocates fought to secure pre-school government funded ABA intervention by University of New Brunswick trained Autism Support Workers and Clinical Supervisors. We also fought to extend that service model into the school system where UNB trained Teacher Aides and Resource Teachers provide ABA instruction to autistic students. While far from perfect, these efforts make New Brunswick one of the best jurisdictions in Canada or the United States in which to raise autistic children.

We had substantial assistance in our efforts from parents in British Columbia (Auton) and Ontario (Deskin-Wynberg) who fought court battles, ultimately unsuccessfully, but whose cases provided careful public examination, particularly in the trial level courts, of the existing scientific thought about autism and effective autism intervention - meaning Applied Behavioral Analysis. We had help from the United States where, unlike the Canadian health and research authorities, credible agencies like the US Surgeon General, the New York State Department of Health and the Maine (MADSEC) Autism Task Force reviewed decades of research and provided clear, coherent guidance and authority for use in our autism advocacy. God Bless America!

We had the intellectual leadership of Professor Emeritus (Psychology) and Clinical Psychologist Paul McDonnell and the organizational savvy and drive of Ann Higgins of the University of New Brunswick College of Extended Learning. They provided us with a clear focus on evidence based approaches to autism interventions and the means by which to obtain such interventions for our autistic children.

We had the considerable abilities and inspirational support of a very smart gentleman with Aspergers named Jason Oldford who demonstrated his own determination in addressing his challenges with every meeting and with his public speaking efforts. And we had a core group of very, very tenacious parents of autistic children who put a lot on the line with their family time and careers in the nursing, military, financial services, and a variety of other occupations.

To the autism support workers, clinical supervisors, teacher aides, resource teachers, educators and civil servants, to all these people and to our New Brunswick politicians who listened and did the right thing I say thank you. Much more remains to be done, particularly in youth and adult residential care, but for what we have today I say again thank you.

I also thank Autism Speaks, an organization which has done great work in creating Autism Awareness and raising funds for research. Autism Speaks did not exist during most or our local autism advocacy and has made no direct contribution to autism efforts in this area. It is an organization under attack from all quarters these days from those who assert that vaccines cause autism to "neurodiversity" advocates and persons with Aspergers and High Functioning Autism who oppose the very concept of curing and treating autism. Even some internet blogging parents who want immediate help in their efforts to help their children now attack Autism Speaks.

Personally I believe Autism Speaks should be criticized like any organization BUT I also believe that it has done unbelievably great work in publicizing and raising awareness of the realities of autism disorders from the various walks, entertainment industry events, and stock car racing events to the United Nations' World Autism Awareness Day.

Autism Speaks has been very active in raising funds for research and research is what has provided the foundation for gains made by autistic persons everywhere. CNN and CBC will continue to interview a few high profile, gifted autistic persons who will explain why THEY do not want to be cured of their autism. But for the millions of people around the world, and their families, who actually struggle with autism challenges, research is the only direction that offers hope for the future and hope that more effective treatments and cures will be found for the neurological disorders now referred to as autism spectrum disorders and Autism Speaks is a driving force behind much of that research. Hopefully the research sponsored by Autism Speaks will not be limited by any specific ideological perspective except that of actually helping autistic persons. Hopefully Autism Speaks will sponsor both genetic and environmental research into autism cause and cure.

For now though this "autism dad" says thank you to everyone who has helped us with our present achievements here in New Brunswick and thank you to Autism Speaks for your tremendous efforts to date and for offering hope for the future.




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Monday, December 22, 2008

What's A Little Snow, Eh?









Conor didn't want go out early in the morning with Dad, preferring to stay warm inside watching the Emperor's New Groove. But by mid-afternoon we couldn't hold him back. And it isn't officially a snow day at our house until Conor has had some snow fun.






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Blizzard!































Fredericton got hit last night and this morning with a good old fashioned blizzard as part of the winter storm that hit across Canada and the northern United States. As reported on CBC:

The thick blanket of snow that covered New Brunswick overnight has left thousands of people waking up to no power.

NB Power is reporting 46 storm-related incidents that are affecting about 7,477 customers. Most of the outages are being felt in the Fredericton area, where there is a transmission outage affecting 5,188 customers.

...

The Fredericton Airport was reporting more than 28 centimetres of snow on the ground early Monday morning. The snow was continuing and Environment Canada projected that another five centimetres could fall before it stopped by late morning.

Environment Canada issued a blizzard warning for the region around New Brunswick's capital. High winds combined with the snow were expected to create whiteouts.

The RCMP in New Brunswick are warning people to stay off the roads Monday morning.

Conor preferred to stay warm and cozy in the house instead of going for a blizzard walk with Dad. Just as well. Conditions on the roads are bad this morning but not bad enough, despite the RCMP warning, to keep some "hosers" from heading out for a coffee at Tim Hortons, eh?




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Sunday, December 21, 2008

Stephanie Lynn Keil, An Autistic Person, Offers Some Autism Reality

Today I received an interesting comment from an anonymous poster who pointed out that a previous comment on my site was spam. That exchange jogged my memory of a very kind comment, definitely not spam, that I received a few weeks ago from Stephanie Lynn Keil , an autistic person who, unlike some of the persons who frequent the media circuit alleging that "autistics" do not want to be cured or treated, has a different point of view.

Stephanie has been severely autistic, now considers herself moderately autistic, and lived an institutional life for many years. She provides a realistic perspective on the challenges facing the moderately and severely autistic and offers her perspective on Amanda Baggs and the media circuit autistic celebrities. Stephanie also speaks about her artistic talent which can be seen at her site Stephanie Lynn Keil.

Stephanie's kind, and informative, words to me, which were previously posted on the Study Suggests Post-Natal, Environmental Causes of Autism comment , follow:

Stephanie Lynn Keil said...

Hello! I just wanted to let you know that I love your blog. I'm 20 and I have severe autism (well, "moderate" now) and it's nice to finally find someone rational. I came to the online world hoping to find others like me but I was very disappointed to find I was one of the very few who actually has autism.

Anyway, I talk very little and have great difficulty with it but can obviously type well so my doctors are now thinking I may have some kind of verbal-oral apraxia. I live with my father and barely leave my house and the only people I communicate with are my family and I barely communicate with them (I recieve disability). I spent years in institutions literally lost in "my own world," hurting myself, pacing all day listening to my headphones, had rigid routines, talking only when spoken to and using words and phrases I borrowed, until I was 18. A doctor told me that at around 17-20 the fronal lobes begin to activate and that this probably helped to contribute to my "breakthrough," along with treatment and helpful people. Makes sense to me since autistic people obviously develop at a much different rate. I call it my "awakening."

Anyway, Conor is lucky to have such a smart and loving father. I'm very naive and I first I believed that Amanda Baggs was telling the truth, but then I realized that it was obviously a fraud. Low-functioning autistic people able to type exist, but Amanda isn't one of them. It's completely illogical and I don't understand why so-called "aspies" and "auties" believe it. Maybe it's because they aren't autistic enough to see the obvious logic and instead want to be a part of a "social movement." I don't even understand Neurodiversity: I don't understand politics or anything social and can't understand how all of these "severely" autistic people understand it either. What's the point? "Autistic community" is an oxymoron. I can't get past that.

Anyway, I go to the local mental health center for treatment (God forbid I get treatment) and am hoping to move into my own supervised community apartment soon. I'm also a savant, which means that everyone in "aspie-land" hates me. I didn't even know I was talented until I was 18, until my "awakening." I never told anyone what I was thinking, it never occured to me because I thought everyone was exactly like me and knew what I was thinking. So, obviously, no one knew and they assumed I was mildly retarded. My favorite thing is art (I also have music, language, hyperlexia and memory) and I'm planning on being a painter because I can't make money doing anything else; art is my passion, or in clinical terms, "obsession." I realize how lucky I am to have savant talents and it makes me sad that no one likes me for it.

Your blog is one of the few autism blogs I read because yours is actually rational. You have a severely autistic child but you're not part of the "mercury" parents and you love your son for who he is and make sure that he recieves good treatment so that he can have the best life possible. Sadly I've found this is a rare occurance. I have a severely autistic couisn whose mother has fallen prey to dangerous treatments. I like your blog so much I may make a painting for young Conor.







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Saturday, December 20, 2008

Autism Smearing on Autism Street, Yes Virginia (Do'C) Conspiracies Do Exist


Autism Street is not a blog I recommend to parents seeking balanced, objective information about the realities of autism cause, cure or treatment.

"Autism" Street is a member of the "Autism" Hub, a group of blogs which embrace the concept that autistic disorder, a neurological disorder, is actually a blessing to be celebrated. It has an ideological approach to discussion of autism issues and can be snide and nasty to those who disagree with the Autism Street views of autism.

Proponents of the various vaccine/autism theories are often targets on Autism Street. Rumors that members of Generation Rescue were to appear on CNN's Larry King prompted Autism Street's owner Do'C into a full scale tizzy and with unabashed glee Doc immediately set out to smear the anticipated guests, thereby pre-emptively dismissing what they might have to say, by painting them as "nutjobs" in his December 20 comment The Lure Of Conspiracy.


The tool used by Do'C, in his smearing of Generation Rescue, was an article about the attraction of conspiracy theories, The Lure of Conspiracy Theories, by Dr. Patrick Leman. Apparently Dr. Leman is conducting research into a mindset or type of reasoning which characterizes conspiracy adherents for whom conspiracies exude a seductive appeal. On this flimsy basis Do'C suggests that Larry King ask the anticipated guests "a real question":

“What would you say to those people who might refer to you as conspiracy theorist nutjobs with your claims that vaccines cause autism and that the government is covering it all up?”

Ah, now I see Do'C. Anyone who suggests that governments might cover up health hazards is a "nutjob" right? Thanks Do'C, now everyone can stop worrying. Unfortunately, in the real world, outside the brick walls of DoC's Autism Street ideology, conspiracies actually do exist and governments have in fact covered up, or failed to disclose, serious health risks.

In Canada our Competition Act, Criminal Code, National Defence Act and Security of Information Act all contain sections setting out offences described as conspiracies. It is my understanding that in the United States similar prohibitions against conspiracies exist, including in the RICO Act. These conspiracy sections, and other sections dealing with fraud, do not exist because of the whims of legislatures. They exist because fraud and conspiracy are, unfortunately, part of the fabric of criminal activity in any society.

Here in the Province of New Brunswick our people were shocked by the charging, trial and conviction of several prominent directors of a public hospital on multiple counts of defrauding a hospital corporation of funds. One of the directors involved in R. v Stymiest was, until his conviction, a sitting Provincial Court judge. In the sentencing decision Mr. Justice Stephen J. McNally stated at paragraphs 14 and 15:

[14] It seems clear that detection of the frauds was also avoided for so long due to the high professional and social status enjoyed by the perpetrators of the frauds. Mr. Stymiest was a sitting Provincial Court judge while the other accused were senior executives of the hospital who were well respected and thought of highly in the hospital and larger community of the Miramichi. Mr. Tucker was the president and Chief Executive Officer of the hospital. He was described as a hard driving manager who was able to get things done. Both Mr. Stymiest and Mr. Tucker were strong willed and imposing personalities which would no doubt cause the average person to think twice before suggesting any improper or even questionable conduct on their part.

[15] Fortunately, good people often rise well above the “average” and due to the tenacity and courage of a few volunteer members of the board who persisted in asking questions and demanding answers, despite the defendants’ positions and responses to the questions; the frauds were eventually investigated and criminal charges instituted.


But Do'C already knows that conspiracies do in fact exist in the real world. Surely he has heard of ENRON? Maybe Do'C is too busy smearing Generation Rescue to have stayed abreast of the news of Bernard L. Maddof's world wide Ponzi scheme?

For DoC's information the Tobacco Industry has been the target of many conspiracy investigations, charges and some convictions:

The defendants in the case were:


* Philip Morris Companies (now Altria)
* R.J. Reynolds Tobacco Company (RJR), now Reynolds American
* Brown & Williamson Tobacco Corporation (BW), now part of Reynolds American
* Lorillard Tobacco Company
* The Liggett Group
* American Tobacco (now part of Reynolds American)
* British American Tobacco Industries (BATCo)
* The Council for Tobacco Research (CTR)
* The Tobacco Institute, Inc.


Specifically, the Department of Justice (DOJ) alleged that the cigarette industry has purposely and fraudulently misled the public about the risks and dangers of cigarette smoking. The government alleged that "the Defendants have engaged in and executed – and continue to engage in and execute – a massive 50-year scheme to defraud the public, including consumers of cigarettes, in violation of RICO". [Taken from DOJ Final Proposed Findings of Fact (FPFF), Executive Summary, page 1.]

....

Conviction

After 6 years of litigation, 9 months of trial, hundreds of depositions and thousands of exhibits, on August 17, 2006 U.S. District Court Judge Gladys Kessler ruled that the Government had proven its case and found that the tobacco company defendants have violated the Racketeer Influenced Corrupt Organizations Act (RICO).

Final Findings

Based on the evidence presented in the case, Judge Kessler ruled that:

* Defendants knew for fifty years or more that cigarette smoking caused disease, but repeatedly denied that smoking caused adverse health effects. Defendants publicly distorted and minimized the hazards of smoking for decades.

* Defendants concealed and suppressed research data and other evidence showing nicotine is addictive, and withheld information about their internal research on addiction, from the American public, the government, and the public health community, including the United States Surgeon General. The Defendants acted this way to maintain profits by keeping people smoking and attracting new consumers, to avoid liability, and prevent regulation of the industry.

* Defendants falsely denied that they can and do control the level of nicotine delivered to smokers to create and sustain addiction.

* Defendants falsely marketed and promoted low tar/"light" cigarettes as less harmful than "full flavor" cigarettes to keep people smoking and sustain corporate revenues.

* From the 1950s to the present, different tobacco companies using different methods have intentionally marketed cigarettes to young people under the age of 21 in order to recruit "replacement smokers" who would ensure the future economic viability of the Tobacco Industry.

* Defendants publicly denied, while internally acknowledging, that secondhand tobacco smoke is hazardous to nonsmokers.

* At various times, Defendants attempted to, and did suppress and conceal scientific research and destroy documents relevant to their public and litigation positions.

The existence of other conspiracies does not prove a claim that government and industry have colluded and conspired to conceal evidence or information showing that vaccines, or vaccine ingredients, cause or contribute to autism cases. Personally I am not convinced that such a case of conspiracy has been established. I also have no doubt though, on the evidence, that public health authorities have in the past discouraged investigation of a possible vaccine/autism connection.

The fact that some people allege the existence of conspiracies does not, as DoC insinuates, mean that they are "nutjobs" whose views should be dismissed. Mr. Justice McNally's comments in R. v Stymiest are worth remembering when contemplating DoC's smear job of the Generation Rescue people and their beliefs. They are not "nutjobs" as DoC clearly insinuates. They are good people rising well above the "average".

They are trying, against the powerful weight of public authority, and sometimes cheap, nasty internet commentary, to right what they believe to be a wrong. And time might well prove them right.




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Friday, December 19, 2008

Christmas Cards and Conor Joy


Christmas cards arrive with the holiday season from relatives, friends, businesses even politicians. Like many New Brunswickers I received a very nice Christmas card from Premier Shawn Graham and his lovely wife Roxanne. They are all nice, even the commercial ones, but I have to admit that one is a bit more special than the rest. The card itself is your standard card company Christmas card but the inside is special to me .... very special. The stickers were placed on the card by the person whose name also adorns the card .... Conor, with one "n", my buddy.

I will never find joy in autism, but I find joy in Christmas and great joy in Conor.




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Thursday, December 18, 2008

This Holiday Season Check Out HealthyToys.org


I commented yesterday on Autism and Lead Poisoning and the possibility that lead may be associated with the autism crisis, the startling increase in cases of autism for which most North American states and provinces remain woefully ill prepared.

While lead poisoning MAY be connected with autism development further research is required to confirm any such connection. There is no doubt, however, that lead is harmful, it is dangerously harmful, particularly to young children, and it is still contained in many children's toys and jewelry items. Parents this holiday season will find it very helpful to check out HealthyToys.org a project of the Ecology Center. I found these sites via One Special Place for Parents of Kids and Adults with special needs a blog site which I also recommend.

The EcologyCenter and HealthyToys.org issued a press release on December 3 which states in part:

The Ecology Center determined that one-third of the toys they tested had "high" or "medium" levels of chemicals of concern this year. Lead was found in 20 percent of the toys tested, including 54 products (3.5 percent) that exceeded the 600 parts per million (ppm) state legal limit set last year and 164 (10.7 percent) above the American Academy of Pediatrics recommended ceiling of 40 ppm. Children's jewelry remains the most contaminated product category.

... Researchers tested for chemicals that have been associated with reproductive problems, developmental and learning disabilities, hormone problems and cancer, and that have been identified by regulatory agencies as problematic. Babies and young children are the most vulnerable populations because their brains and bodies are still developing, and because they frequently put toys into their mouths. The testing was conducted with a screening technology — the portable X-Ray Fluorescence (XRF) analyzer — that identifies the elemental composition of materials on or near the surface of products. Highlights from the HealthyToys.org 2008 findings: * Lead is Still in Toys — HealthyToys.org found lead in 20 percent of all the products tested this year. When children are exposed to lead, the developmental and nervous system consequences can be irreversible. The Healthy Michigan, Healthy Kids platform calls for implementing the American Academy of Pediatrics threshold level of 40 ppm for toys sold in Michigan. * It's Not Just Lead — HealthyToys.org found that 2.9 percent, or 45 products, had bromine at concentrations of 1,000 ppm or higher. This indicates the likely, unnecessary use of brominated flame retardants — chemicals that may pose hazards to children's health. HB 4465, pending in the state House, would severely restrict the use of one type of brominated flame retardant. Arsenic was detected at levels greater than 100 ppm in 22, or 1.4 percent, of products; 289 (18.9 percent) of products contained detectable levels of arsenic. Mercury was found above 100 ppm in 14 (1 percent) of products; 62 (4.2 percent) of products contained detectable levels of mercury. The Healthy Michigan, Healthy Kids platform calls for no more than 40 ppm of mercury or arsenic in children's products.

...
Jewelry — Jewelry remains the most contaminated product category tested. Children's jewelry was five-times more likely to contain lead above 600 ppm than other products tested by HealthyToys.org.

HealthyToys.org has several pages of helpful information for people buying toys and jewelry this holiday season including several pages of toy rankings by brand, type, best toys and worst toys. Toys listed on the best toys page had no detectable traces of Lead, Cadmium, Chlorine, Arsenic, Mercury, Antimony, Tin, Bromine, or Chromium in any components tested. Toys listed on the worst toys page are those found to contain lead, brominde, cadmium, arsenic or mercury.




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