Monday, December 31, 2007

Autism Mom Jenny McCarthy On Chicago Sun-Times Ten Women Who Inspired in 07 List

In a move that will undoubtedly provoke angry outbursts from Autism Hub bloggers the Chicago Sun-Times has named Autism Mom and Celebrity Autism Activist Jenny McCarthy as one of the The ten women who inspired us in '07. Paige Wiser and Lisa Donovan of the Sun-Times noted that:

Jenny McCarthy

The zany blond struck a serious note this year, going public with her son's autism diagnosis. Her book Louder Than Words: A Mother's Journey in Healing Autism was honest, informative, down-to-earth and sometimes painful. McCarthy took a gamble, going public with her problems and shattering her fantasy image. Mothers everywhere thank her.

I do not subscribe to Ms McCarthy's views about autism causes and treatments but I try to keep an open mind and science is not, despite the views of neurodiversity bloggers to the contrary, a process by which possibilities are closed forever. New evidence, new studies may well support her anecdotal evidence about autism cause and treatment.

I do admire Ms McCarthy for speaking out about her son's condition and her efforts to help him. She must have known that as a beautiful actress she would be subjected to scorn and ridicule in some corners for presuming to enter the public debate on issues that affect her son so profoundly. But she did it anyway and encouraged many other parents in doing so. And she probably brought more attention to autism disorders and autism issues than the entirety of the Autism Hub's neurodiversity bloggers will ever do in their lifetimes.

Autism Wishes 2008

My autism wish list for 2008:

1. That all persons with autism, their friends and family members will have the best possible year in 2008 with access to effective evidence based intervention, autism trained teacher aides and teachers and appropriate residential care and housing.

2. That a cure will be found for autism, a cure which is capable of reversing, even amongst older autistic children and adults, some of the most severe aspects of autism disorder, a serious neurological disorder.

3. That the stigmatization of intellectually impaired autistic persons by society at large, by prominent media organizations, by some very intelligent and higher functioning autistic persons, and by some 'autism hub' bloggers will cease.

4. That the few who disagree with my views on autism see the error of their ways. :-)

Happy New Year to All!

Sunday, December 30, 2007

Autism and Conor's Eyes Shut Visit With Grammy and Grampy

The last few days were spent on the road visiting my mother and father in Nova Scotia's Annapolis Valley.

In the past when we arrived at my parents' home Conor would run into the living room and check out the video cassettes that have been kept there for him over the years inspecting each one on the shelf on which they were stored. This year Conor would not open his eyes at all while inside the house itself. He did open them in the front entrance area before entering the kitchen and while outside the house. (It wasn't shyness around Grammy and Grampy; Grammy got a big smile and a flash of Conor's blue eyes - outside the house, and while in the entrance area, but not inside the house itself).

Conor, through the window, in the entrance area before
coming into the house itself at Grammy and Grampy's

Conor will sometimes react negatively when seeing people from his past, people he was really close to but whom he does not expect to see anymore. This appeared to be more of that tendency. Some object to the use of the puzzle piece as a symbol for autism. I think it is very appropriate and Conor's eyes shut visit with Grammy and Grampy is part of Conor's autism puzzle.

Autism Predictions 2008

These are my autism predictions for 2008. Some are wildly speculative; some are ho hum continuations of existing trends. Like all attempts to "predict" the future they are inherently futile but I will make them anyway.

1. The Autism Knowledge Revolution will continue to expand and add to our real knowledge of autism disorders. 2007 saw a breathtaking explosion of research into the neurolgoical bases and structures of autism disorders. That trend will continue and the public will be informed less and less by prejudice and ideology and more and more by actual knowledge of what autism disorders are and how they can be treated. Research will also continue into possible environmental contributors to the rise of autism diagnoses.

2. In Canada the federal government of Prime Minister Stephen Harper will continue to ignore, thereby contributing to the worsening of , Canada's autism crisis just as it has helped sabotage international efforts to address the global warming crisis. (No this years return of a traditional Canadian winter does not offset the measurable reality that the polar ice caps are shrinking. In the North the warming is wrecking havoc on the Arctic environment and impairing the traditional Inuit way of life). Canada's National Autism Strategy will remain a joke as long as Stephen Harper remains as Prime Minister of Canada.

3. The stigma attached to intellectually impaired autistic persons will continue. Intellectually impaired autistic persons will remain invisible to the eyes of Dr. Sanjay Gupta, CNN and other major media organizations and stars who seek out autistic persons to portray for public consumption. And the Neurodiversity bloggers who like to portray historical geniuses such as Einstein as autistic will continue to deny the existence of the the many intellectually impaired autistic persons.

4. Ignorance about autism will continue. Autistic children in both Canada and the United States will still be sent home from public schools because "educators" are not educated about the realities of autism disorders. And some autistic youths will continue to be charged as criminals for behavior resulting from their autism disorders.

5. Autism reality will assert itself daily as lower functioning persons with autism move from the care of their families to residential and institutional settings where they will begin their lives in the care of strangers.

6. Some autistic persons such as Dr. Temple Grandin will continue to shine as role models for persons with Aspergers and High Functioning Autism.

7. Parents will continue to fight for their children with Autism Disorders. They will continue to educate, treat and care for their autistic children while hoping that the Autism Knowledge Revolution soon finds a cure for their children's Disorders. They will do so because they love their children - not their children's neurological disorders.

Saturday, December 29, 2007

Offensive Language On Autism Street

The uproar over the NYU Ransom Notes campaign has given way to smug victory happy dances by many in the neurodiversity community. But few of that crowd are taking the time to examine their own offensive language particularly when exercising their obsessions with celebrities who do not share their views such as Jenny McCarthy and now ..... Donald Trump. In Where Is Trump’s Science Team? at the Autism Street blog site where he mocks Ms McCarthy and Mr Trump as "celebrity idiots":

I was really beginning to think that Jenny McCarthy would be an extremely popular candidate for being considered the “celebrity idiot of the year” by many scientific thinkers in the autism blogging community. I suppose I should have known better about claims to the singular, where the plural is not only possible, but likely.

Jenny apparently has company.

I know that I used the word "idiot" in the past. In the 12 years since my intellectually challenged son with Autism Disorder came into my life though I have refrained from using the term.

Apparently Do'C at Autism Street isn't familiar with the old expression "Idiot Savant" which has now largely been replaced with the expression "Autistic Savant". Perhaps there is no room on Autism Street for the many intellectually impaired persons with Autism Disorder.

Friday, December 28, 2007

Autism Reality On The Road

Autism is not a culture or a way of life.

Those who believe that autism is a Joy to be celebrated are guilty of seriously muddled thinking. Stressing the positive in any situation is admirable. Denying reality is harmful and can even be dangerous. Autism is a serious neurological disorder which restricts the lives of many who engage in serious self injurious behavior. It can also result in injury to family members, care givers, teacher aides and strangers.

I have written previously of the time that my son Conor, who has Autism Disorder with profound developmental delays, left the house while I was engaged in a business call, crossing a busy nearby street unaware of the dangers of automobile traffic. His life was probably saved by the actions of the Good Samaritan who got out of his vehicle and took him to safety in a nearby convenience store where I was directed to pick him up after calling 911. I owe too much to that Good Samaritan to be able to describe adequately in words.

Driving with a person with Autism Disorder can also present serious danger .... to the entire family. On several occasions Conor has slapped or grabbed my arm while driving. He has also hit and scratched me on the head, neck and shoulders while driving, including yesterday, driving home from the local Chapters outlet.

These honest descriptions of some of the real challenges of Autism Disorder on the road are not meant to demonize my son or other persons with Autism Disorder as some internet commentators routinely allege of anyone trying to deal with some of the harsher realities of autism. I find great joy and comfort in my son every single day. I enjoy his company. Conor is a lot of fun and he can lift my spirits so easily with a face pressed against a window waiting for Dad as I pull in the driveway at the end of a rough day at work. But I do him no service by denying the realities, the negative realities, presented by his Autism Disorder.

Autism Disorder presents many challenges on the road. And life's road is long. If a cure is found for Autism Disorder I would jump at the chance to have my son receive the benefit of that cure. I would seek a cure to help Conor on life's long road, much of which he will travel without me, alone, in the care, and company, of strangers.

Wednesday, December 26, 2007

Joy of Conor Christmas

Conor had a lot of fun this Christmas, not because of his autism, not despite his autism, he just had fun, just like any other kid at Christmas.

Conor enjoyed the snow and was pleased to get some Christmas fun gifts.

What's the point of stickers if you can't wear them on your hands?

Woooops! That snow bank is a little deeper than I thought!

Oh Canada! I Stand on Guard for Thee!

Hey, I AM CANADIAN. A little bit of snow doesn't bother me!

Back to work, well fun sort of work anyway!

Offensive Autism Language - "Autie" and "Curebie"

In the new post Ransom Notes world of autism discussions it seems that freedom of speech, and truth telling, must give way to the sensitivities of various persons and organizations. That being the dynamic of this new autism world order then I would like to offer my list of terms that I find offensive. I ask that the sensitive souls who petitioned NYU into submission over the Ransom Notes campaign, and others, cease and desist their use of these offensive and demeaning terms. I will start my list with two that I find particularly offensive: "autie" and "curebie".

1. Autie - is an expression used by some persons with Aspergers, and some parents and professionals who have surrendered to the ideology of the anti-cure movement, to describe persons with autism. I have a son who is diagnosed with Autism Disorder with profound developmental delays. The use of the term trivializes the very serious challenges he faces now and for the rest of his life. It is demeaning and stereotypical. Autism Disorder is a serious neurological disorder and can involve serious and dangerous intellectual, communication and behavior deficits. Please do not use the term "autie" to describe my son or other persons with Autism Disorder.

2. Curebie - is a derogatory term which is intended to be derogatory. It is a term coined by some anti-cure high functioning persons with Aspergers, and those who support their ideology, and it is primarily directed at parents trying to help their children; parents trying to treat and cure their autistic children. It is also directed at organizations promoting research aimed at curing autism. Please cease and desist the use of this hateful, offensive term.

Autism, the Rotenberg Center and Rational Criticism

Much of the criticism of the Judge Rotenberg Educational Center use of aversives to help prevent serious self injurious behavior by persons with autism and other disorders amounts to little more than pompous, holier than thou, name calling by individuals or groups who offer no real alternative to the use of mild aversive therapy in such dangerous situations. Instead they simply proclaim that the JREC is evil, their methods are evil, and that therefore the JREC must be stopped. They offer no real solution to help prevent the dangerous and deadly behavior by persons whose parents seek the help of the JREC.

An editorial from the Boston Globe on offers a much more balanced and reasonable criticism. It acknowledges the testimony of concerned parents who support the JREC, and the need for aversive therapy in some serious instances such as eye gouging, head banging and self mutilation but it critiques the error prone history of the JREC and stresses the need for more oversight of staff. From the Boston Globe we have received some calm, cool headed reflection. A rarity in discussion of autism issues and treatments.

"Israel says the center has implemented a slew of new supervisory and monitoring practices for its 38 group homes. But the overnight shift still lacks direct supervision by a registered nurse or other licensed medical professional. That doesn't inspire confidence.

The decision to apply aversive techniques rests in the hands of parents and a probate court judge who vets each case with medical experts. The question isn't so much whether skin shocks are an acceptable form of treatment, but whether the Rotenberg Center is the right place to do it.

Tuesday, December 25, 2007

Autism and Rotenberg's Unanswered Questions

In Parents Defend School’s Use of Shock Therapy the New York Times has revisited the Judge Rotenberg Education Center's use of aversive therapies, particularly the "shock" therapy, a mild two second bee sting style of shock, used in treating children with severe aggressive, self injurious even self mutilating behavior arising from autism and other disorders. Many scientists, therapists, politicians, bureaucrats and internet bloggers have condemned the Rotenberg center's use of aversives. But The New York Times goes beyond the Mother Jones breathless expose approach to these issues and presents the perspective of Susan Handon and other parents whose children have benefited from aversive therapy and who have even obtained a court order so they could continue to send their children to the Rotenberg Center for treatment.

Why are parents fighting to keep their children in a center which subjects them to a form of shock treatment? The NYT describes some of the reasons children are being treated at the JREC:

"Rotenberg is full of children who will run up and hit strangers in the face, or worse. Many have severe types of dysfunction, including self-mutilation, head banging, eye gouging and biting, that can result from autism or mental retardation. Parents tend to be referred there by desperate education officials, after other institutions have decided they cannot keep the child."

The Rotenberg's effective use of aversive therapy in addressing such serious issues poses a challenge to the world to provide an effective alternative treatment. The parents who send their children there can not be easily dismissed as Ms Handon has shown. Insults and political correctness will not address these issues.

If an effective aversive treatment is going to be taken out of the hands of the Judge Rotenberg Education Center what will replace it? Ineffective drugs, physical restraints? Purely positive interventions even if ineffective? If the political correctness crusaders prevail will they accept responsibility for children with autism and other disorders who then go on to engage in self mutilating behavior and aggression to others?

Monday, December 24, 2007

Wisconsin Teachers Improperly Restrained Students With Autism

Teachers in a Racine, Wisconsin school district, the Unified School District, have been improperly restraining autistic school children and other children with cognitive disabilities. The Journal Times Online reports that a young autistic boy had been restrained in a chair with a belt for up to 50 minutes a day, without his mother's knowledge, and without entering information concerning the restraint on his Individual Education Plan. The teacher's involved were using it to "remind him to sit" and lacked adequate training in behavioral interventions for autistic children.

The "educators" involved, the bureaucrats, and the politicians who fail to ensure that educators working with autistic children have adequate autism specific training all deserve a share of responsibility for situations like this. But so too do the "autism acceptance" ideologues who continually, despite decades of evidence of its effectiveness, try to denigrate Applied Behavior Analysis as a proven effective method of helping address problem behavior in autistic children and helping them make real social, communication and intellectual gains. The anti-ABA crowd provide cover to bureaucrats and politicians who want to avoid the financial cost of paying for ABA trained teacher aides and teachers, to provide autistic children with a real education free of unnecessary restraints.

Sunday, December 23, 2007

mGluR5 Spells Hope For Autism

Mark Bear, director of the Picower Institute and Picower Professor of Neuroscience (right), and Gül Dölen, a graduate student at Brown University,
report the correction of fragile X syndrome in mice. Photo / Donna Coveney
MIT News

Parents of autistic children have been preyed upon by purveyors of unproven treatments for their children's autism. But today there is hope, real hope, for autistic persons and the family members who care about their autistic children. Hope for an effective medical autism treatment is no longer something peddled by charlatans. We can now see it. We can even spell it. Hope for autism is spelled mGluR5.

mGluR5 is the shorthand for a metabotropic glutamate receptor. It was featured in the study led by Mark F. Bear, director of the Picower Institute and Picower Professor of Neuroscience at MIT published in the December 20 2007 edition of Neuron. The study by Professor's Bear's team supports the theory that many of FXS's (Fragile X's) psychiatric and neurological symptoms--learning disabilities, autistic behavior, childhood epilepsy--stem from too much activation of one of the brain's chief network managers, the metabotropic glutamate receptor mGluR5. As reported in MIT News:

Bear and colleagues study how genes and environment interact to refine connections in the brain. Synapses are the brain's connectors and their modifications are the basis for all learning and memory. There's a growing consensus among researchers that developmental brain disorders such as FXS, autism and schizophrenia should be considered "synapsopathies"--diseases of synaptic development and plasticity (the ability to change in response to experience).

Dendritic spines--little nubs on neurons' branchlike projections--receive many of the synaptic inputs from other neurons. Abnormal spines have long been associated with various forms of human mental retardation. In FXS, spines are more numerous, longer and more spindly than they should be. Thin spines tend to form weak connections.

The research team found that a 50 percent reduction in mGluR5 fixed multiple defects in the fragile X mice. In addition to correcting dendritic spines, reduced mGluR5 improved altered brain development and memory, restored normal body growth and reduced seizures--many of the symptoms experienced by humans with FXS.

The researchers used genetic engineering to reduce mGluR5, but a drug could accomplish the same thing. Although not yet approved by the FDA, mGluR5 blockers are entering into human clinical trials. "Insights gained by this study suggest novel therapeutic approaches, not only for fragile X but also for autism and mental retardation of unknown origin," Bear said.

As Christmas approaches families with autistic children may already have received our most wondrous gift of all - the knowledge necessary to provide an effective medical treatment for autism.

Friday, December 21, 2007

Canadian Autism Prevalence Rates Different Than US Rates?

In early February 2007 the Center for Disease Control, the CDC, publicly revised its autism estimated prevalence rate from 1 in 166 Americans to 1 in 150. In Canada the Canadian Institutes of Health Research, the CIHR, web site indicates on its autism page, Health Research: Key to improving outcomes for children with autism, that "Autism, or more appropriately autism spectrum disorders (ASDs), affects an estimated 6 of every 1000 Canadian children." The calculator program on your computer will tell you that 6 in 1000 is roughly 1 in 166, the old CDC figure.

Why the discrepancy between the CDC's estimated prevalence rate and the CIHR's estimated Canadian rate? There are a number of possible explanations:

1) Canada, for reasons that could be environmentally or genetically based, could actually have fewer persons with autism spectrum disorders than the United States.

2) The CIHR may simply be using the old CDC estimate, unaware that the CDC revised its estimates of autism prevalence almost one year ago.

3) The CIHR may be aware that the CDC has changed its estimate but disagrees with the new estimate.

4) The CIHR may be aware of the newer CDC estimate and may agree with it; but can't be bothered to update its autism website information.

I am going to go out on a limb and guess that the correct answer is .... 4) The CIHR can't be bothered to update its autism website information. That explanation would be consistent with the attitude of the CIHR's political masters, the Harper government, which can't be bothered making a serious effort to address Canada's autism crisis.

And this is the same CIHR which said that it wants to build ties in Canada's autism community and help disseminate autism information to those communities? Maybe those of us who are merely ignorant parents, whose shoes will never be asked to tread the carpets of the CIHR national autism symposiums, should weigh carefully the information that ultimately emerges from those secretive conventions.

Thursday, December 20, 2007

Autism Consultation: US (Transparent) v Canada (Secretive)

Lisa Jo Rudy, host of Autism posted a comment informing the public that the National Institute of Health (NIH) wants public feedback on autism research issues. In The NIH Wants YOU to Provide Recommendations for Future Autism Research! Ms Rudy provides the following information:

"Do you have specific ideas or direction for the NIH, as it implements the Combatting Autism bill? If so, now is the time to take action. The NIH has just issued an "RFI" (request for information) to the autism community, and they are seeking your input on next steps for research. Here's the essential information: Description

The purpose of this time-sensitive RFI is to seek input from ASD stakeholders such as individuals with ASD and their families, autism advocates, scientists, health professionals, therapists, educators, state and local programs for ASD, and the public at large about what they consider to be high-priority research questions."

As a Canadian active in autism advocacy I am impressed with the American openness and true public consultation as reflected in the above referenced Request for Information. By contrast I am disgusted with the secretive, elitist, and politicized approach taken by the Canadian Institute of Health Research. In Canada the CIHR cancelled a planned National Autism Symposium when it found out that autism parent advocates wanted to play a real part in the symposium. It was rescheduled and described as a "research" symposium, with secretive, limited invitees, and with the implication that the parents who live 24/7, 52 weeks a year with autism realities could not possibly offer any intelligent contribution to the discussion. Oh Canada, we can do better than that.

Wednesday, December 19, 2007

Study Details Atomic Structure of Autism Associated Proteins

Autism has been defined largely by behavioral deficits. That is changing though as new research is reported almost daily providing more detail on the neurological basis of autism. NEURON magazine in its incredible December 20 07 issue has published a report of a study showing it is possible to reverse some symptoms of Fragile X and some autism disorders. The same issue reports a study detailing, on an atomic level, the structure of altered proteins associated with autism.

In Structural Analysis of the Synaptic Protein Neuroligin and Its b-Neurexin Complex:
Determinants for Folding and Cell Adhesion
Pascale Marchot and Igor P. Fabrichny, Institut Fédératif de Recherche-Jean Roche, Université de la Mediterranée; Philippe Leone, Gerlind Sulzenbacher and Yves Bourne, Universités Aix-Marseille; and Davide Comoletti and Meghan T. Miller, UCSD Department of Pharmacology, Skaggs School of Pharmacy and Pharmaceutical Sciences provide detailed data, charts and description of the structure of the neurologin family of proteins believed to be affected by genetic mutations and believed to be involved with autism and mental retardation.

In Atomic Structure of Proteins Altered in Autism the University of California, San Diego Health Sciences Press Release published on Newswise emphasizes that this study builds on previous studies but provides new detail:

“This goes beyond previous studies to show the individual atoms of these two proteins and how they interact,” said Palmer Taylor, Ph.D., Dean of SSPPS and the Sandra & Monroe Trout Professor of Pharmacology. “We have described the mutations found in some people with autism; and we have identified where the altered amino acids are located in the protein, and how they impact the folding and cell adhesion properties of neuroligin and neurexin.”

The research builds on earlier work that mapped the molecular structure of neuroligins and their partner proteins, neurexins – a protein complex involved in the junctions, or synapses, through which cells of the nervous system signal to one another. The new study, conducted with Pascale Marchot and Yves Bourne and their colleagues in Marseille, France, adds to a clearer understanding of how particular genetic mutations affect formation of this complex and contribute to the developmental abnormalities found in certain individuals with autism.

Normally, individual neuroligins interacting with specific neurexin partners are involved in synaptic adhesions, imparting ‘stickiness’ that enables them to associate and form synapses that have the capacity for neurotransmission. Incorrect partnering in these diverse protein families results when a mutant neuroligin fails to associate properly at synapses, preventing the normal transmission of brain cells.

The change in synaptic function may account for impairments in development, social interaction and communication displayed in individuals with autism spectrum disorders, according to the researchers.

The world is experiencing an Autism Knowledge Revolution. When knowledge grows superstition, prejudice, ideology and personal agendas wane in influence, in this case to the benefit of persons with autism.

Today There Is Hope For Targeted Autism Treatments

Today's exciting news of Fragile X and autism symptom reversal in mice holds out hope for specific targeted treatment for entire autism spectrum according to medical experts interviewed by TIME in A Fix for One Type of Autism :

What was especially remarkable was the number of ways the intervention reversed Fragile X symptoms. The specially bred mice had fewer seizures, more normal brain structure, a more typical rate of body growth and they performed better on a learning task than mice with uncorrected Fragile X. The experiment suggests that treating Fragile X with a drug that inhibits mGR5 receptors could have similarly healing effects.

"This gives the whole field of autism a lot of hope for targeted treatments that can be beneficial," says Dr. Randi Hagerman, medical director of the MIND Institute and director of the Fragile X Research and Treatment Center at the University of California, Davis. "It's likely that the mGR5 pathway may be involved in other kinds of autism," she says. That means that a drug that works on this pathway could have broad application in treating autism.

TIME also reports that drugs that block the mGR5 receptor already exist and researchers are wasting no time setting up human clinical trials. Most parents whose children have been diagnosed for several years are disciplined by expert advice and ... disappointment and few are unlikely to get too wound up over today's news but it seems like one of the most promising breakthroughs to date for families seeking to treat and cure their autistic children.

MIT corrects inherited retardation, autism in mice

Wow! This could be the best autism news of all in the year of the Autism Knowledge Revolution.

MIT corrects inherit
ed retardation, autism in mice

Research points to potential drug treatment

CAMBRIDGE, Mass.- Researchers at MIT's Picower Institute for Learning and Memory have corrected key symptoms of mental retardation and autism in mice.

The work, which will be reported in the Dec. 20 issue of Neuron, also indicates that a certain class of drugs could have the same effect. These drugs are not yet approved by the FDA, but will soon be entering into human clinical trials.

Fragile X syndrome (FXS), affecting 100,000 Americans, is the most common inherited cause of mental retardation and autism. The MIT researchers corrected FXS in mice modeling the disease. “These findings have major therapeutic implications for fragile X syndrome and autism,” said study lead author Mark F. Bear, director of the Picower Institute and Picower Professor of Neuroscience at MIT.

The findings support the theory that many of FXS's psychiatric and neurological symptoms-learning disabilities, autistic behavior, childhood epilepsy- stem from too much activation of one of the brain's chief network managers-the metabotropic glutamate receptor mGluR5.

“Fragile X is a disorder of excess-excess synaptic connectivity, protein synthesis, memory extinction, body growth, excitability-and remarkably, all these excesses can be reduced by reducing mGluR5,” said Bear, a Howard Hughes Medical Institute investigator.

Individuals with FXS have mutations in the X chromosome's FMR1 gene, which encodes the fragile X mental retardation protein, FMRP. The MIT study found that FMRP and mGluR5 are at opposite ends of a kind of molecular seesaw. They keep each other in check, and without FMRP, mGluR5 signals run rampant.

Bear and colleagues study how genes and environment interact to refine connections in the brain. Synapses are the brain's connectors and their modifications are the basis for all learning and memory. There's a growing consensus among researchers that developmental brain disorders such as FXS, autism and schizophrenia should be considered “synapsopathies”- diseases of synaptic development and plasticity (the ability to change in response to experience).

Dendritic spines--little nubs on neurons' branchlike projections-receive many of the synaptic inputs from other neurons. Abnormal spines have long been associated with various forms of human mental retardation. In FXS, spines are more numerous, longer and more spindly than they should be. Thin spines tend to form weak connections.

The research team found that a 50 percent reduction in mGluR5 fixed multiple defects in the fragile X mice. In addition to correcting dendritic spines, reduced mGluR5 improved altered brain development and memory, restored normal body growth, and reduced seizures-many of the symptoms experienced by humans with FXS.

The researchers used genetic engineering to reduce mGluR5, but the same thing could be accomplished by a drug. Although not yet approved by the FDA, mGluR5 blockers are entering into human clinical trials. “Insights gained by this study suggest novel therapeutic approaches, not only for fragile X but also for autism and mental retardation of unknown origin,” Bear said.

Earlier this year, MIT Picower Institute researcher Susumu Tonegawa and colleagues reported positive results using a different approach to reversing FXS symptoms. Tonegawa and colleagues identified a key enzyme called p21-activated kinase, or PAK, that affects the number, size and shape of connections between neurons.


In addition to Bear, authors include Brown University graduate student Gul Dolen; Picower Institute postdoctoral fellow Emily Osterweil, B.S. Shankaranarayana Rao of the National Institute of Mental Health and Neuroscience in India; MIT graduate students Gordon B. Smith and Benjamin D. Auerbach; and Sumantra Chattarji of the National Center for Biological Sciences and Tata Institute of Fundamental Research in India.

This work is supported by the National Institute of Mental Health; the National Institute of Child Health and Human Development; the National Fragile X Foundation; FRAXA, a Fragile X research foundation; and the Simons Foundation.

Another Autism Year Over and What Have We Done?

So this is Christmas
And what have you done?
Another year over
And a new one just begun

John Lennon, Happy Xmas (War Is Over)

A year can mean a lot in the lives of children with autism and other pervasive developmental disorders. On December 5 2006 the Canadian House of Commons passed a private members' motion, M-172, put forward by MP's Andy Scott and Peter Stoffer. Since then the government has done precious little to achieve the goals set out in the motion:
Motion M-172, as passed by the House of Commons on Tuesday, December 5, 2006.

That, in the opinion of the House, the government should create a national strategy for autism spectrum disorder that would include:

a) the development, in cooperation with provincial/territorial governments, of evidence based standards for the diagnosis and
treatment of autism spectrum disorder;

b) development, in cooperation with provincial governments, of innovative funding methods for the care of those with autism spectrum

(c) consulting with provincial/territorial governments and other stakeholders on the requirements of implementing a national
surveillance program for autism spectrum disorders; and

(d) the provision of additional federal funding for health research
into autism spectrum disorder.

Since December 5 2006 little has been done to achieve the goals set out in M-172. Time was squandered on a secretive autism symposium that was NOT an exercise in community building.

The items requiring consultation and cooperation with provincial government, in particular the development of innovative funding methods for the care of those with autism spectrum disorder did not happen. Or at least it did not happen with any public participation or awareness.

Canada, under the government of Stephen Harper, another autism year over and not much has been done.

Monday, December 17, 2007

Environmental Causes of Autism

One of the most succinct arguments in support of an environmental theory of autism can be found in a fact cited by autism expert Simon Baron-Cohen, Director of the Autism Research Centre, Cambridge University :

Autism and Asperger’s syndrome run in families. If there is one child who has a diagnosis on the autistic spectrum, the likelihood of another child also having a diagnosis is about 5-10 per cent, which is higher than the general population rate. Molecular genetic studies are focused on identifying the key genes that might play a role in increasing the risk of a diagnosis. Studies of twins have established that it is not 100 per cent genetic, since even among identical twins, when one has autism, the likelihood of both twins having autism is only about 60 per cent. This means there must also be an environmental component, but what it is remains unknown.

Simon Baron-Cohen, Freedom of Expression, TIMESONLINE, December 14, 2007

What are the unknown environmental components of autism? Mercury is the most often mentioned. Lead is another frequently mentioned environmental suspect. In Autism Can Be Treated Dr. Carolyn Dean lists these and several other possible environmental contributors to the development of autism in some persons and offers her explanation of how these substances can be contributing factors in the development of autism:

When you allow yourself to go beyond the behavioral model of autism you will find research showing that one pivotal metabolic insult to an infant who develops autism is damage to a specific kinase enzyme. In a vulnerable segment of the population, perhaps 10%, a particular gene sequence can be damaged by heavy metals (mercury in children’s vaccines or flu shots and dental amalgams in the elderly), antibiotics, alcohol, and acetaminophin. This vulnerable gene sequence is found in people who have autism and Alzheimer’s; it is the template for creating the kinase enzyme P13. Some researchers refer to this gene sequence as the Alzheimer’s gene, which is damaged early in these children by of overwhelming metabolic insults.

Why is kinase P13 so important? The body requires kinase P13 for many tasks, one of which is to help break down gluten (a wheat, rye, oats, and barley protein) and casein (a milk protein). This same enzyme allows the methylation (or biochemical modification) of certain B vitamins. Without proper methylation of B12 into methylcobalamin and folic acid into folinic acid, hundreds of functions are impaired. For example, if you don’t have methylcobolamine, your liver can’t make glutathione (a powerful antioxidant). Without glutathione the body is not able to detoxify heavy metals. The vicious cycle is complete. The heavy metal that causes the gene damage in the first place is not excreted as it should be and continues to accumulate and cause more damage. So intricate are these pathways that giving children the wrong kind of folic acid or B12 can make matters worse; consequently autism therapy must be overseen by knowledgeable parents and practitioners.

Dr. Dean is an advocate of the DAN protocol which includes behavioral treatment along with the more controversial GF-CF diet treatment. Research is genetic causes of autism has been exploding in recent years, and hopefully will continue to provide more information about autism and its causes. Hopefully too the potential environmental causes of autism, including mercury, will be fully researched and cures developed. Some parents today prefer to find joy in their child's autism but I believe that most would cure their children and give them the richer life to which most of us aspire ...... if a cure were to become available. Given the likelihood of both genetic and environmental causes of autism, working in combination, it seems likely that autism cures will involve treatment or prevention of environmental insults to children with susceptible genetic heritage. Hopefully the necessary research will be permitted to continue and will not be shut down by the next misguided, hysterical, "autism is beautiful", campaign.

An Autism Dad Thanks Dr. Harold Koplewicz

Dr. Harold Koplewicz
New York University Child Study Center

Dear Dr. Koplewicz

I am writing as the father of a severely autistic boy nearing 12 years of age in New Brunswick, Canada. I started an autism blog site called Facing Autism in New Brunswick 16 months ago as a means of lobbying local and national government, educators and autism service providers. I also started it, in part, because of the lack of internet sites focusing on the real needs of autistic children and adults and their families. Much of the internet "autism" fare really reflects a subgroup of SOME high functioning autistic persons and a handful of parents who all have one element in common: they all glorify autism as something other than what it is, a serious neurological disorder which impairs the lives of autistic children and adults.

For this group, as alluded to in the New York Times article, "harsh-upsetting" language describing autism is more upsetting than the harsh-upsetting realities of autism. It is this highly organized internet community which reacted with hysterical outrage to the "Ransom Notes" campaign just as they did to the Autism Every Day video and all other efforts to portray the negative realities that restrict the lives of many people with autism. They do not, however, speak for parents like myself, with an autistic son who does not understand language on such a level that he would be offended by the imagery of the Ransom Notes campaign, imagery which I personally find provocative but not unduly harsh or upsetting.

I do not find honest accurate description of autism realities to be harsh or upsetting. Not when compared to the real challenges faced by autistic children who injure themselves, walk into dangerous daily life situations unaware of the risks, appear in news stories as having wandered away, often, but not always, to be found safe, or who live their lives as adults in the care of strangers. As such a parent I thank you for the Ransom Notes campaign which was a courageous effort to break through the persistently trivializing autism awareness campaign of those who organized the petition and drive to silence the voices of those who inspired the Ransom Notes campaign.

I recently received a message on this blog site from an "anonymous" poster. The message appears to have been sent to me by mistake as part of a spam style mail out of anyone who posted on the Ransom Notes topic at one of the internet sites organized to quash the campaign. I posted there in opposition to that effort. The message I received is part of a continuing effort to harass you and NYU for your effort to raise public awareness of the seriousness of autism disorders. It states:

they are not hearing us

They have not responded to our requests to pull the campaign and it sounds like we are really emboldening Harold Koplewicz and his boss, Robert Grossman, appears to be letting Koplewicz see the campaign through. I found some contacts that are over both of their heads and we need to promote a major emailing, writing and phone calling campaign to Medical Center Board Chairman Kenneth Langone, NYU President John Sexton, and NYU Trustee Chairman Martin Lipton. Here is their contact info; PLEASE help get the word out."

I do not subscribe to the views of the organizers of the "shut down Ransom Notes" campaign and I am not alone. As the host of a site where I try to discuss the WHOLE autism picture, positive and negative, I occasionally receive emails from parents appreciative of the honest portrayal of autism that I try to present here. As a father I appreciated the courage of the parents featured in the Autism Evey Day video who addressed the harsh-upsetting realities confronting their autistic children. And I appreciate your courage in addressing these realities. Many parents are busy trying to help their autistic children, go to work, and care for other family members and not everyone is willing to risk the public condemnation that you have endured at the keyboard busy hands that have opposed the Ransom Notes campaign.

I sincerely thank you for your efforts to portray the realities of autism and to create true autism awareness.

Harold Doherty
Fredericton, NB, Canada

Sunday, December 16, 2007

Autism and Translational Research at the University of Nebraska Medical Center

Translational Research is a term which not often seen on autism internet sites. For professionals, parents and other family members and care givers actually trying to help improve the outlook for autistic children and adults though Translational Research is an important element of what they are trying to do in helping their autistic loved ones and patients.

The NIH Roadmap for Medical Research defines Translational Research:

Translational Research


To improve human health, scientific discoveries must be translated into practical applications. Such discoveries typically begin at “the bench” with basic research — in which scientists study disease at a molecular or cellular level — then progress to the clinical level, or the patient's “bedside.”

Scientists are increasingly aware that this bench-to-bedside approach to translational research is really a two-way street. Basic scientists provide clinicians with new tools for use in patients and for assessment of their impact, and clinical researchers make novel observations about the nature and progression of disease that often stimulate basic investigations.

Translational research has proven to be a powerful process that drives the clinical research engine. However, a stronger research infrastructure could strengthen and accelerate this critical part of the clinical research enterprise. The NIH Roadmap attempts to catalyze translational research in various ways.

On Monday, December 17, 2007, Dr. Wayne Fisher, director of the University of Nebraska Medical Center will be making a presentation entitled "Integrating Basic and Applied Research in the Treatment of Autism at UNMC. " The presentation will discuss how the application of basic behavioral research principles in a treatment setting has allowed Dr. Fisher, H. B. Munroe, Professor of Behavioral Research at UNMC and their team to significantly improve care for those with autism and related conditions. Says Dr. Fisher : " "This approach has allowed us to develop more efficient and refined procedures that target the specific environmental causes of problem behavior".

Autism and ABA Success Story From ARC Broward

Priorities differ in the autism world like anywhere else. For some the choice of metaphors used to describe autism and autistic behaviors is the most important priority. For many parents of autistic children thought the priorities are shaped more by day to day, sometimes harsh and upsetting, realities. For these real world parents of children ending their autistic child's aggressive harmful behavior, to themselves and others, is by necessity the top priority in their autism campaign. In ARC Broward helps autistic boy improve behavior reports a success story; the story of how the Travis family improved the aggressive and violent behavior of their autistic son Trey with the help of ARC Broward and Applied Behavior Analysis.

Trey's behavior was defiant and sometimes violent and dangerous:

"Trey stood on his head in public places, choked his older sister and defied almost every request his family made. They quit taking him to birthday parties, play dates and restaurants."

The Travis family did not give up on Trey, they sought the help of Achievement and Rehabilitation Services (ARC) Broward who helped the family using ABA techniques:

"With the help of ARC's Parents as Teachers program, his family began learning how to ignore his bad behavior and use positive reinforcement to make changes for the better.

"I thought it just can't be that easy. I have tried everything," Kylee Travis said. "But it was the combination that worked."


Kylee Travis said the results were astonishing.

"Here you have Trey behaving this way and we were accepting it because we were confused about what an actual trait of autism is, vs. bad behavior," she said.

ARC "addressed our needs and addressed issues in the order of importance. We're not stuck in our bubble anymore."

Today, Trey can sit and play games with his mother. Before ARC got involved, he would destroy the games, she said.

Now he can sit at the table and eat dinner with his family. But it took being wedged between his mother and father, with their hands on his legs until he took a bite, for him to learn what was expected. Four months ago, after less than a year in the program, the Travis family ate at a restaurant with another family — without incident — for the first time ever."

The Sun-Sentinel article does not actually use the term ABA to describe the approach used to help Trey Travis but anyone who has actually been involved with ABA will recognize the techniques. And a visit to the ARC Broward web site confirms that ABA is used by that agency to address behavior challenges of developmentally delayed children:

Behavioral Healthcare Services

In-Home Behavioral Supports In-Home Behavioral Supports

This program provides individuals and their caregivers the training and support necessary to be successful in addressing the needs of their child while in the natural home environment. The Community-Based Behavioral Services Program provides in-home behavioral services for children and adults who are diagnosed with a developmental disability/delay. Individualized behavior plans are designed to address maladaptive behaviors and teach functionally equivalent and adaptive skills. These plans are developed by Certified Associate Behavioral Analysts, Certified Behavior Analysts and approved/monitored by a Board Certified Behavior Analyst.

Autism success stories using ABA bring to the attention of parents anecdotal evidence of what works in helping heir autistic children. It is the kind of autism awareness that makes a real, and positive, difference in the lives of autistic children and their families.

2007 Autism Blog of the Year - Autism

My personal pick as Autism Blog of the Year 2007 [excluding Facing Autism in New Brunswick ] is the Autism Blog hosted by Lisa Jo Rudy. Ms Rudy's views often reflect the "neurodiversity" perspective; an autism perspective which I do not share. The neurodiversity emphasis can be quickly seen in the links on the related sites portion of the blog where links are provided to the neurodiversity network of alleged "autism" bloggers. Yet, Ms Rudy has clearly been trying to present all views on controversial autism subjects including the recent battle by the neurodiversity community which successfully bullied the NYU Ransom Notes campaign into submission. The parents whose concerns inspired the Ransom Notes campaign lost a voice with that defeat but the blame for that does not lie with Ms Rudy who tried to present all sides of the issue.

Another example of Ms Rudy's attempt to present all autism perspectives is the recently posted series on autism treatments. Most of the treatments presented are not evidence based as effective autism treatments. For that reason I would not endorse them personally but I think it is worthwhile to review and discuss these matters publicly.

For trying to fairly present all sides of the many controversial autism debates my personal choice for Autism Blog of 2007 is Autism. Sorry, I don't have a fancy Web 2.0 badge to offer Ms Rudy for this "award" but I do offer my appreciation.

Autistic Man Found Safe in Indiana

The South Bend Tribune reports Ryan Evans, 23, who is autistic, does not speak and communicates in writing or by signals, was found safe after wandering away for almost 8 hours. His mother thought he would seek out a familiar place which he did. " Shortly after midnight, she said, Ryan walked into the SpringHill Suites at Edison Lakes Parkway in Mishawaka and wrote a note to the clerks, asking them to call his family."

News reports of autistic children and adults wandering off and getting lost are fairly frequent. Most parents will understand what the parents of the people involved must feel during the time they are missing. Each and every happy ending to such reports is worth celebrating.

Saturday, December 15, 2007

Autistic Man Found Safe in California - A Real Autism Feel Good Story

While much of the autism news this week has revolved around the hysterical reaction in some quarters to the 'Ransom Notes' campaign a real autism story also took place in Ukiah California where Ted Daly, a 20 year old autistic man, unable to speak, capable only of communicating by hand gestures, ran away from school and was missing for 14 hours in below freezing temperatures. The Press-Democrat reports that "hundreds of people were looking for 20-year-old Ted Daly when he was finally found walking on Low Gap Road early Thursday morning

Fortunately Mr. Daley turned up safe. Other news stories of autistic persons leaving their homes and running in traffic or getting lost have not always turned out so well. The hard realities of persons with Autism Disorder are not helpful in telling the "autism is beautiful" story that the harsh critics of the 'Ransom Notes' campaign insists on selling to the world. Arguing about what metaphors are appropriate for use in describing autism did not result in Ted Daly's safe return. It was hundreds of people sacrificing their time and effort to help a neighbor and maybe some good luck.

Autism Reality from Professor Simon Baron-Cohen

I have not always been a fan of Professor Simon Baron-Cohen. He enjoys status as a world renowned autism expert, as the Director of the Autism Research Centre at Cambridge University, who has actually worked with autistic children from across the entire autism spectrum matter. When Professor Baron-Cohen talks about autism the world listen. In the past though, I have been concerned that he was contributing to the trivializing of autism, a serious neurological disorder, by some public comments apparently supportive of the view that autism should not be cured, that it is a "culture", or "way of life". Whether my interpretation of those remarks was accurate or not I admit to being pleasantly surprised by some of the autism facts articulated by Professor Baron-Cohen in Freedom of expression published December 15, 2007 in the TIMESONLINE.

In this article Professor Baron-Cohen addresses many of the myths and misconceptions about autism disorders and at the same time gently, but candidly, describes some of the realities of this disorder, realities which unfortunately are all too often ignored, or disputed, by some anti-autism cure ideologues:

"Autism comes by degrees. People with the milder form, Asperger’s syndrome, display communication difficulties and “obsessional” interests. In severe cases, however, it can be as if your child is locked in a glass bubble, staring vacantly past you as you desperately try to make eye-contact. The thought of never being able to fully communicate with your child, or to know what is going on inside his or her mind, can be heartbreaking."

This statement may seem straightforward and obvious to many. It certainly is to me as the father of a severely autistic boy on the threshold of his teen years. Yet there are many in the internet autism "community" who take offense at any attempt to distinguish between levels or degrees of autism severity. Professor Baron-Cohen's acknowledgment of this reality will be hard from them to dismiss. So too will his description of some autistic children as existing as though they were locked in glass bubbles with vacant stares. Such comments from other sources might elicit internet petitions protesting the "harsh-upsetting" language used to describe some children with autism. Professor Baron-Cohen is unlikely to receive the same treatment for his honesty.

The article contains other comments which should also be uncontroversial but which still generate considerable debate. Professor Baron-Cohen addresses misconceptions about autism such as those that blame autism on the MMR vaccine or bad parenting or those that attribute autism entirely to genetic causes:

Studies of twins have established that it is not 100 per cent genetic, since even among identical twins, when one has autism, the likelihood of both twins having autism is only about 60 per cent. This means there must also be an environmental component, but what it is remains unknown.

Professor Baron-Cohen clearly distinguishes between Autism and Aspergers and states that persons with autism may also have below average IQ, language difficulties and social avoidance on a much different level than those with Aspergers. This article reviews some of the recent research which has advanced our understanding of the neurological bases of autism disorders.

Professor Baron-Cohen also refers to a helpful autism educational approach being practiced at TreeHouse school which he describes but does not mention by name:

Schools such as TreeHouse in North London are excellent examples of what can be provided: small class sizes, at times even one-to-one teacher-child ratios, where teaching is aimed at building simple skills and rewarding the child for every small step they make. Specialist teachers shape such skills into more complex ones, giving the child the experience of success and thus self-confidence. Such schools have to be highly organised because such children have problems in coping with unexpected change.

The educational approach described by Professor Baron-Cohen sounds suspiciously like ABA
and a visit to the TreeHouse web site confirms that suspicion on the ABA and Teaching at Treehouse page:

ABA and Teaching at TreeHouse

ABA is the comprehensive application of scientific principles, such as reinforcement, to developing skills and promoting positive behaviour and learning. Specific teaching strategies, programmes and other interventions are individually tailored and adapted. The principals of ABA underpin the teaching and learning of pupils at TreeHouse school. The responses and progress of the pupils are very carefully defined and monitored through appropriate data collection methods. .......

It says much about the intensity of the anti-ABA ideological movement, led by Laurent Mottron and Michelle Dawson in Canada, that a distinguished Professor who has spent much of his adult career actually working with autistic children would feel the need to cloak his helpful advice concerning the effectiveness of ABA in educating autistic children. Nonetheless, with this article Professor Baron-Cohen has helped address many of the distortions and misconceptions that plague discussion of autism.

A large helping of autism reality from such a credible source makes for a fine holiday season gift for autistic children, adults, their families and caregivers.

Friday, December 14, 2007

Autism News of the Year - 2007

These are my personal choices for top autism news of the year - 2007

Autism Research (Tie)

Autism genome scan reported.
Unified Theory of Autism published.

Autism Health Care

American Academy of Pediatric autism reports published:
Identification and Evaluation of Children with Autism Spectrum Disorders
Management of Children With Autism Spectrum Disorders

Autism Awareness (3 Way Tie)

Autism Every Day Video
screening at the Sundance Film Fesitval.
Faces of Autism series published in the Vancouver Sun.
World Autism Awareness Day, April 2, declared by United Nations.

Autism Vox Tells The NYT PART Of the Autism Story

In reaction to a provocative public service advertising campaign which highlighted some of the negative realities of autism and other mental disorders, Kristina Chew of Autism Vox did what she does day in and day out, she told part of the story of autism. In Campaign on Childhood Mental Illness Succeeds at Being Provocative Ms Chew gave the New York Times the "let's all feel good, say nice things, and sing Koombaya" part of the story of autism and she expressed indignation and outrage on behalf of parents of special-needs children, autistic adults, teachers, disability rights advocates and mental health professionals about the negative picture of autism presented by the campaign.

At Autism Vox Ms Chew rarely mentions any of the negative realities that actually result in autism diagnoses or that impair the lives of so many autistic children and adults and the family members and caregivers who love and care for them. Any expression of those negative realities whether it be the Autism Every Day video or the campaigns by people such as Jenny McCarthy to cure autism are met with hostility, scorn and ridicule at Autism Vox.

The campaign that Ms Chew attacks with her efforts is a campaign to help children with psychiatric disorders. In the Autism Vox Universe it is people trying to help children by telling the truth who are the enemy. In fact it is the truth that is the enemy at Autism Vox. And WHO are the real people behind the campaign? It is not NYU. It is those people who speak the truth about their children's conditions - honest, caring parents. It is they who inspired the campaign attacked by Ms Chew:

"According to Dr. Koplewicz, the campaign was inspired by filmed conversations of parents and children talking about life with a psychiatric disorder. “These families felt their children were trapped by their disorders,” he said.

John Osborn, the president and chief executive of BBDO New York, said the effort was intended to increase the sense of urgency about the diseases and encourage conversation. “It’s tricky because there are a lot of messages in the air, particularly at holiday time. That makes it a challenge to cut through the clutter.”

BBDO’s earlier ads for the Child Study Center — which included images of a child running happily through a sprinkler and a drawing of a child caught in a maze — “were wonderful, but they didn’t get this kind of attention from anyone,” Dr. Koplewicz said. “They were too pleasant and innocuous. That’s the reason we decided to go along with BBDO.”

He was further emboldened, he said, by the reaction of focus groups of women whose children have the disorders mentioned in the ads. “Everyone who participated felt the ads were informative,” he said. “While we knew the campaign was edgy and we knew it would be harsh and upsetting, the facts of mental illness are even more upsetting.

Thankfully the New York Times told both sides of the story. My son has Autism Disorder. He is severely autistic. I have a duty to speak the truth about his disorder, a sense of duty not on display at Autism Vox where parents speaking the truth are treated with contempt and outrage. It was encouraging to see the NYT present an explanation for the campaign.

Some day it might dawn on Ms Chew that parents speaking the truth about their children's autism disorders actually love their children every bit as much as she does, that we find joy in our children every single day of our time together with them. But unlike Ms Autism Vox we also understand that time IS in fact the enemy for most of our autistic children, that many WILL live their lives dependent on the cares of others, especially after we are gone. We live with the realities of self aggression and aggression to others. We live with the realities of ever present danger to our children presented by every day life. And we try to do something about it, for our children and for other autistic children and adults. And we do something rarely done at Autism Vox we speak the whole truth about autism

Ms Chew bragged to the New York Times about the 3,000 to 4,000 daily visitors to Autism Vox. What she failed to mention were the hundreds of thousands of parents across the United States and Canada fighting to treat and cure their autistic children, parents who, on behalf of the children they love, speak the truth, the whole truth, about autism. And like the campaign organizers at NYU we know that the facts of autism are more upsetting than the provocative imagery used in the awareness raising ransom notes campaign - for most of us anyway.

Wednesday, December 12, 2007

Canada's Autism Disgrace

What is Canada's National Autism Strategy? The answer is simple; we don't have one. And as long as Stephen Harper's Reform-Alliance-Conservative government rules Canada with an iron fist we will not have a National Autism Strategy. My friends of Conservative background in Canada may not like it but that is the hard brutal truth. Canada will not have a real National Autism Strategy as long as Stephen Harper is Prime Minister of Canada.

We certainly had the beginnings of a National Autism Strategy with the passing of the Andy Scott-Peter Stoffer motion in the House of Commons. And MP Shawn Murphy fought the good fight with his private member's initiative; defeated in the House of Commons by the alliance between the Harper Conservatives and the separatist Bloc Quebecois. Senator Jim Munson has continued his valiant efforts to keep the need to address Canada's national autism crisis alive in the media but even those efforts are becoming more challenging as the Harper-Clement team simply ignores these initiatives, ignores the needs of autistic children and adults in Canada, and proves day in and day out that they don't give a damn about the fate of autistic Canadians.

The National Autism Strategy of Prime Minister Harper really amounted to nothing but a mediocre web site and a promise of a National Autism Symposium. The National Autism Symposium was postponed when it became clear that real autism advocates, parents fighting for their autistic children, wanted to attend the symposium. A second symposium was scheduled for November 8 and 9 in Toronto. The invitation process was itself secretive, parents were largely unrepresented and any outspoken advocates were intentionally excluded from the Symposium.

The lists of speakers and symposium themes were never made public. The list of Harper government, hand picked delegates, to the symposium was never made public although it is a good bet that anti-ABA activists like Michelle Dawson and Laurent Mottron would have been invited. The Quirks and Quarks duo rarely miss an opportunity to promote their fringe anti-ABA views, contrary to hundreds of studies over 5 decades and numerous reviews of those studies by organizations such as the US Office of the Surgeon General and the American Academy of Pediatrics, that ABA is a scientifically supported, evidence based, effective treatment for autism. Their long held, closed minded views, so at odds with mainstream professional opinion, come in handy when needed by a government seeking excuses to camouflage their do nothing approach to addressing Canada's National Crisis. Just a guess, but I am betting that the Harper team was quite happy to invite Mottron and Dawson to the invisible, forgotten, National Autism Symposium.

The Autism Symposium went ahead on November 8 and 9 in Toronto and Canadians STILL don't know a thing about what was said; or what conclusions, if any, were reached. It is likely though that the Harper spin doctors will ultimately issue a summary indicating that there is lack of agreement on issues on the effectiveness of any one intervention in treating autism. The results of hundreds of studies over five decades of research, the reviews by the American Academy of Pediatrics, the Office of the US Surgeon General, the MADSEC Administrators, the New York and California state agencies, the Association for Science in Autism Treatment; all will be ignored.

The views of a few fringe anti-ABA activists will be used to prop up a cynical do nothing Harper autism policy. And Canada's National Autism Strategy will remain as nothing more than what it now is - Canada's Autism Disgrace.