We Don't Need Anymore Autism Ideological Extremism


In Colorado the prosecution has announced that it will not pursue charges against a woman who killed her child because she feared that her child was autistic.  Unfortunately some in the ever controversial world of "autism awareness", including Shannon Des Roches Rosa aka Squid Rosenberg of the ironically named Thinking Person's Guide to Autism have chosen to use this tragedy to promote their particular ideology and viciously attack those with whom they disagree. 

A defense psychiatrist and a prosecution psychiatrist in Colorado each found the woman to be insane. The hospital in which she is detained refuse to release her for a  court appearance and when she did appear it was in a suicide preventing smock. The details are of her killing of her  child, as reported at Daily Camera online are  gut wrenching. 

"Child would 'ruin' her life


During the initial investigation last summer, Rochester told detectives that she believed her baby, Rylan, was autistic, and that having an autistic child would emotionally and financially "ruin" her life.


According to a police report, she told detectives that she placed a plastic bag over Rylan's head. When the infant was still breathing some time later, she told police she placed blankets over his face.


When Rylan was unresponsive in the morning, his parents rushed him to Avista Hospital in Louisville, where he was declared dead June 1, 2010.


Since pleading not guilty by reason of insanity late last year, Rochester has spent much of her time at the state hospital in Pueblo.


On one occasion, doctors there refused to release her for a court appearance in Boulder. They said she was too unstable to travel. Rochester frequently has appeared in court wearing a suicide-prevention smock."


Out of this tragedy Shannon des Roches Rosa was inspired to  advocate ... not for improved services, and help, for mothers with serious mental health issues and post partum depression but to attack "negative portrayals of autism" in the media, parents and parent organizations that paint negative pictures of autism. She attacks Age of Autism,   Adventures in Autism, AnneDachel, and SafeMinds and describes them as "evil":


"Vanquish the Forces of Autism Evil! Declare Your #AutismPride!

I also blame autism organizations and websites like Age of Autism, Adventures in Autism, AnneDachel, and SafeMinds, which have made unilateral demonization of autism their mission; which do no outreach whatsoever based on building positive supports and communities; and which use calculated cult-like "us or them" mindsets, attack dog techniques, misinformation, and censorship practices to keep their almost exclusively autism parent and grandparent faithfuls' righteous indignation and self-pity at a roiling boil.

It doesn't matter how much you love someone with autism -- if you continuously and publicly declare them damaged goods, you are hurting them. And their peers. And telling everyone else it is acceptable to hurt Autistics."


Ms Des Roches Rosa is not content to attack anyone who presents the negative realities of autism disorders. I suspect she would take great offence and declare me evil for referring to autism as a disorder or group of disorders. She does, however, find the wherewithal in her anguish and anger to pat herself, and her fellow "Thinking Persons", on the back and promote their forthcoming book:

"this latest tragedy makes me frantic to get our TPGA book out (I'm marking up the proof right now, if there are no more hiccups with the publication process and thanks to the superhero manuscript powers of Jen Myers, it should be available in one week)."

For Des Roches Rosa, judging by the content of her blog page, autism is not a serious mental disorder listed in the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association.  For her autism does not include intellectual disability, serious self injury, injury to family members and caregivers. When an autistic person goes wandering and drowns or dies in a snow storm in Nova Scotia that is not autism.  When a 50 year old severely autistic woman is abused in a facility in New York state by her attendants who are caught only because of a surveillance camera and a conscientious co-worker that is not autism. The adult autistics that, in my capacity as an autism organization representative, I have visited in psychiatric hospital facilities where they live out their lives, are not autism. For Ms Des Roches Rosa my severely autistic son who has limited understanding of the world, has limited communication skills, has bitten his hands and wrists and slapped and hit his head is not autism.  For her talking honestly about my son's autism realities makes me evil. 

For Des Roches Rosa autism is not a disorder. For her it is just some proudly quirky people fighting against the forces of evil including parents struggling to help their autistic children live the best lives they can.

I do not agree with Ms Des Roches Rosa and her fluffy, feel good, very high functioning autism advocacy.  I find her claim to be a "Thinking Person" capable of guiding others on autism subjects to be ... amusing.  But, unlike her, I do not , because of our differing perspectives about autism disorders describe her as "evil".

Shannon Des Roches Rosa is misguided, seriously misguided in her views about autism disorders.  In her essay on the Colorado infanticide she has engaged in ideological extremism. She apparently harbors much hatred towards parents who view autism disorders as ... disorders ... but I have no reason to describe her as "evil".  And I do not intend to follow her example and  declare war on her or any other member of the world autism "community" with whom I disagree about autism disorders.

To Shannon Des Roches Rosa, I wish you and your loved ones happiness during the  approaching holiday season and beyond.  

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Autism night before Christmas

Really felt this was worth sharing .

To the Parents of children with autism I want to offer a hug of understanding and praying for many Christmas blessings ( both large and small) .

To the family and supporters of these families , please give them a reassuring smile , a helping hand or words of encouragement during this chaotic time.

Autism Night Before Christmas by Cindy Waeltermann

Twas the Night Before Christmas And all through the house , The creatures were stirring ...Yes, even the mouse . We tried melatonin And gave a hot bath , But the holiday jitters They always distract . The children were finally All nestled in bed When nightmares of terror Ran through my OWN head. Did I get the right gift ?The right color? And style ? Would there be a tantrum ? Or even, maybe, a smile?

Our relatives come , But they don’t understand The pleasure he gets Just from flapping his hands. “He needs discipline,” they say “Just a well-needed smack, You must learn to parent…” And on goes the attack

We smile and nod Because we know deep inside The argument is moot. Let them all take a side .

We know what it’s like To live with the spectrum The struggles and triumphs Achievements, regressions… But what they don’t know And what they don’t see Is the joy that we feel Over simplicity.

He said “hello” ! He ate something green! He told his first lie! He did not cause a scene! He peed on the potty Who cares if he’s ten?! He stopped saying the same thing Again and again!

Others don’t realize Just how we can cope How we bravely hang on At the end of our rope. But what they don’t see Is the joy we can’t hide When our children with autism Make the tiniest stride .

We may look at others Without the problems we face With jealousy, hatred Or even distaste, But what they don’t know Nor sometimes do we Is that children with autism Bring simplicity.

We don’t get excited Over expensive things . We jump for joy With the progress work brings .

Children with autism Try hard every day That they make us proud More than words can say.

They work even harder Than you or I To achieve something small To reach a star in the sky .

So to those who don’t get it Or can’t get a clue Take a walk in my shoes And I’ll assure you ... That even 10 minutes Into the walk You’ll look at me With respect, even shock.

You will realize What it is I go through And the next time you judge I can assure you That you won’t say a thing You’ll be quiet and learn, Like the years that I did When the tables were turned…….

Autism Research Studies Exclude Low Functioning Autistic Participants

Discrimination against persons with low functioning autism disorders takes many forms. It is particularly rampant in the autism research world where studies purporting to inform us about autism almost invariably exclude low functioning autistic participants. Conclusions are again being drawn about persons with autism spectrum disorders based on a study which excluded low functioning autistic participants.  The study examined the effectiveness of the antidepressant Prozac in treating repetitive behavior and obsessive-compulsive behavior in adults with "autism". 

Presumably physicians will be prescribing Prozac either as a consequence of this study and similar confirming studies. If all their clients are persons with high functioning autism and Aspergers they will at least have done so on some evidence basis.  If physicians prescribe Prozac to low functioning autistic adults based on this and similar studies however they will be doing so without any evidence basis. 

The antidepressant Prozac may alleviate repetitive behavior and obsessive-compulsive symptoms in adults with autism, reducing these defining symptoms of the disorder, according to new research.

The research, which included 37 high-functioning autistic adults, mainly diagnosed with Asperger's syndrome, followed participants for 12 weeks. Taking Prozac (fluoxetine) doubled the chances that a patient would show overall improvement, measured by their clinicians. Half of the participants taking Prozac had significant reductions in obsessive-compulsive symptoms, compared with 8% taking placebo. Side effects were mild to moderate and participants taking Prozac did not show increases in suicidal thoughts or ideas.

"Repetitive behavior is a core symptom of the illness," says lead author Dr. Eric Hollander, medical director of the Autism and Obsessive-Compulsive Spectrum Program at Montefiore Medical Center in New York, explaining that "from a very early age, these children have rituals and routines. For example, they like to line up their toys and they get very bent out of shape if there is any deviation."


The abstract for the study, A Double-Blind Placebo-Controlled Trial of Fluoxetine for Repetitive Behaviors and Global Severity in Adult Autism Spectrum Disorders, published in The American Journal of Psychiatry,  refers to the participants as adults with ASD's, or Autism Spectrum Disorders, but does not indicate that the study does not involve any low functioning autistic participants. The title of the study report also refers to adult autism spectrum disorders without identifying the exclusion of low functioning autistic participants.

Aspergers? CHECK High Functioning Autism? CHECK Low Functioning Autism? NO, not in the "autism" research world.

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Autism and Dr. Allen Frances' Question 5: Will Autism Research Be Possible After the DSM-5?


Dr. Allen Frances, chair of the DSM-IV Task Force
and principle investigator on the DSM-IV Field Trials

The last major changes to the "autism section" of the DSM occurred in 1994 with the grouping  of Aspergers, PDD-NOS and Autistic Disorder in the Pervasive Developmental Disorders section and are still cited by many as the primary basis for the massive increases in autism diagnoses over the past two decades.  No one doubts that a substantial amount of the recent increases are due to the DSM-IV diagnostic changes. The debate is over whether those changes account for the entire increase or whether they serve to mask or obscure the role of possible environmentally induced increases. With the DSM-5 soon to hit doctors' bookshelves the ability to develop a  reliable understanding of what is behind future changes in the numbers of autism disorder diagnoses will probably be lost forever,  or at least for the foreseeable future.  Epidemiological studies, already the subject of much debate, and much confusion,  could be rendered useless as tools for understanding what causes autism disorders. 

In his November 8, 2011 article, APA Responds Lamely to the Petition to Reform DSM-5, re-posted by Brent Robbins PhD December 5, 2011 on the blog of the Society for Humanistic Psychology, Division 32 of the American Psychological Association, Dr. Frances, primary architect of the DSM-IV,  asks five questions about possible diagnostic inflation resulting from the DSM-5.  Question 5 asks the million dollar question:

5) Won't the many small, needless, and arbitrary changes in DSM-5 complicate future research efforts and make impossible the interpretation of data collected before versus after DSM-5?

If the answer to Dr. Allen Frances question is yes, as the Frances led DSM-IV experience suggests, then our ability to determine whether specific environmental factors are contributing to, or causing, autism disorders could be lost for another generation or more.  

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Possible Prenatal, Environmental, Causes of Autism Disorders: Valproate Drugs?



The following information is taken from a July, 2011 information update on the Health Canada web site. It indicates that recent studies have found that "children whose mothers took a valproate drug tend to score lower on cognitive (intelligence) tests than children whose mothers who took other anti-epileptic medications during pregnancy." 

The release also indicates, somewhat more ambiguously, that  "Product labelling for both Depakene and Epival [valproate drug brands sold in Canada] contain information on the risk of birth defects (e.g., spina bifida), as well as the risk of developmental delay, autism and/or autism spectrum disorders." It would be helpful if Health Canada explained exactly what that statement was supposed to mean.

The abstract of  a study reported in 2005 is somewhat clearer.  In Arndt TL, Stodgell CJ, Rodier PM (2005). "The teratology of autism". Int J Dev Neurosci 23 (2–3): 189–99. doi:10.1016/j.ijdevneu.2004.11.001. PMID 15749245  it states that:

"Autism spectrum disorders affect behaviors that emerge at ages when typically developing children become increasingly social and communicative, but many lines of evidence suggest that the underlying alterations in the brain occur long before the period when symptoms become obvious. Studies of the behavior of children in the first year of life demonstrate that symptoms are often detectable in the first 6 months. The environmental factors known to increase the risk of autism have critical periods of action during embryogenesis. Minor malformations that occur frequently in people with autism are known to arise in the same stages of development. Anomalies reported from histological studies of the brain are consistent with an early alteration of development. Congenital syndromes with high rates of autism include somatic that originate early in the first trimester. In addition, it is possible to duplicate a number of anatomic and behavioral features characteristic of human cases by exposing rat embryos to a teratogenic dose of valproic acid at the time of neural tube closure."

Given the huge imbalance of autism research funding that overwhelmingly favors genetic research over environmental focused autism research it is amazing that the autism paradigm shift which emphasizes the interaction of genetic and environmental factors is taking place. It is encouraging to see research of possible environmental factors particularly studies that examine possible prenatal causes of autism disorders. 

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The Autism Enigma: The Bacterial Theory of Autism


David Suzuki in Fredericton
Photo by Charles LeBlanc

When David Suzuki speaks people listen as shown in this photo by New Brunswick  blogger Charles LeBlanc taken in the United Church near my office in downtown Fredericton.  As you can see the church was, literally, filled to the rafters. David Suzuki is one of the most trusted voices in Canada in explaining science and the world in which we live.

On Thursday December 8 David Suzuki will be presenting the Autism Enigma on "The Nature of Things".  I have  no idea what will be said, what perspectives will be offered, or whether I will agree with all, or any, of what is said,  but, because it is David Suzuki narrating, I will be shocked if it is not a well informed, balanced and objective discussion of the subject. This "autism dad" will be listening. I encourage others with an interest in understanding possible causes of autism disorders to do the same. 

The following press release was provided by Laurie Mawlam, Executive Director of Autism Canada:

(CORRECTION NOTICE - The Autism Enigma will air at 8 pm Atlantic, not 9 pm as I had previously indicated. HLD)

THE AUTISM ENIGMA,
THE STARTLING NEW DOCUMENTARY FROM COGENT/BENGER,
AIRS ON CBC's "THE NATURE OF THINGS"
THURSDAY DECEMBER 8, 8 PM ET, 8 PM Atlantic

Available for phoners: Marion Gruner, Dr. Derrick MacFabe of University of Western Ontario, Dr. Emma Allen-Vercoe, Microbiologist at University of Guelph.
TORONTO November 7, 2011. THE AUTISM ENIGMA, the new documentary from the award-winning Cogent/Benger Productions, tackles one of the most contentious issues in medicine today: the various, and often conflicting, hypotheses about autism’s cause. It airs on CBC's "The Nature of Things" on Thursday December 8, 8 PM (ET/PT)(8:30 PM Nfld)(8 PM Atlantic),  with a second window on December 15 (10PM ET/PT. 10:30 Nfld.)(11PM Atlantic).

The film presents the fresh perspective of the “Bacterial Theory” of autism. Director Marion Gruner (a new mother who decided to investigate autism rather than just worry) along with co-director Christopher Sumpton, went beyond celebrity-endorsed theories and common assumptions to make new research accessible and understandable to all parents.

Narrated by David Suzuki, The Autism Enigma is written and directed by Marion Gruner (Pharma Sutra) and Christopher Sumpton (Pedal Power), produced by Christopher Sumpton, Robin Benger (Sex Scandals in Religion, Five Roads to Freedom), and Marion Gruner. Cinematography by Michael Grippo, csc, editing by Matthew Campea, and original music composed by Kevan Staples.

Autism is the fastest rising developmental disorder in the industrialized world. Even accounting for better diagnosis, its numbers have increased by an astounding 600% in the last twenty years. Even more disturbing is that science cannot say why. Research is inconclusive, but the emerging theme is that autism, while possibly stemming from genetic vulnerability, is triggered by environmental factors. Is something in our Western lifestyle proving too much for children to bear? Some say it’s the canary in the coalmine. Many say it’s an emergency.
  

Meanwhile, 70% of children with autism exhibit severe gastrointestinal symptoms, prompting some microbiologists to direct their research to an unexpected place - and ask whether autism actually begins in the gut.  



The Autism Enigma looks at the progress of an international group of scientists examining the gut’s amazingly diverse and powerful microbial ecosystem for clues to the baffling disorder, and the extraordinary efforts of parents who have been relentlessly pushing science forward in hopes of finding answers for their children’s condition.


The documentary features: Laurie Mawlam, Executive Director of Autism Canada, Dr. Derrick MacFabe of University of Western Ontario, Adar Hassan and Idman Roble of the Somali Parent Support Group, Toronto, Dr. Emma Allen-Vercoe, Microbiologist at University of Guelph, and some children and child care workers from Puzzle Pieces Ltd.

The Autism Enigma is a Cogent/Benger Productions production made in association with the Canadian Broadcasting Corporation and ARTE France, and with the assistance of The Canadian Film or Video Production Tax Credit.

Robin Benger and Christopher Sumpton teamed up in 1997 to produce In Security for the CBC, which then led to Eastside Showdown for the NFB. Cogent/Benger Productions was formed in 1999 to continue in the same vein, producing relevant, creative documentaries such as Sex Scandals in Religion, Five Roads to Freedom, Pedal Power, Porndemic, Pharma Sutra, China’s Leap of Faith, How To Stop a Hurricane, which received  the innovation prize at the Pariscience Film Festival,  Money & The Maker, The In-Between World of MG Vassanji, Destiny: The Life & Times of Paul Anka and Wolverine: Devil Of The North. C/BP's programs have been seen on Canadian networks, such as CBC, CTV and Discovery, as well as internationally. 

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Autism? Florida IT Autism Prof Says: Hakuna Matata!



It seems to be impossible for anyone connected with the Mainstream Media, the MSM, to speak honestly and accurately about the natue of autism disorders.  Even Dr. Ivy Chong of the Florida Institute of Technology whose site lists her impressive autism resume feels compelled to paint a pretty picture of autism disorders and ignore the harsher realities as shown in the following excerpts from her interview by Matt Reed at Florida Today:

To learn more about the mysterious disorder, I interviewed Dr. Ivy Chong, director of behavioral services at the Scott Center for Autism Treatment at the Florida Institute of Technology in Melbourne. Chong is a licensed psychologist and board-certified behavior analyst.

.....

Q:What happens to autistic children when they become adults?

Chong: A person with autism can expect to live a very good quality of life. They can hold jobs. There are some very bright individuals who aren’t even diagnosed with Asperger’s until they get to college, and they do very well. Their level of focus is exceptional in certain topics or courses.

As the children we are working with get integrated and go to school, and we have treatments for social skills and getting jobs, the sky’s the limit.

Professor Chong could have, but did not, mention the 70% of persons with Autistic Disorder and Intellectual Disabilities and severe challenges in daily functioning. She could have mentioned the 30%  of those with autism and epilepsy. Instead she chose to mention high functioning persons with Aspergers some of whom are only diagnosed at university. She could have mentioned the very serious self injurious behavior issues, wandering, drownings and traffic deaths of those severely autistic who do not understand how the world works but she did not. She could have mentioned the uncounted numbers of severely autistic adults living with parents, in group homes and in institutional care, but she did not.  

Just more feel good buzz about autism the beautiful and nothing about those who are most severely affected by autism disorders.  Just the usual omission from our public consciousness of the invisible autistics, those in greatest need of our attention and assistance.  From a MSM outlet like Florida Today? Par for the course. From an accomplished, experienced BCBA certified director of an autism treatment center? Very surprising.

Hakuna Matata! It's a problem free philosophy!

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