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‏إظهار الرسائل ذات التسميات Jonathan Mitchell. إظهار كافة الرسائل
‏إظهار الرسائل ذات التسميات Jonathan Mitchell. إظهار كافة الرسائل

Autism Reality Check: Where Are The IACC Results?

I have previously written about the importance of the IACC and in a 2009 blog comment expressly thanked the IACC for its role in advancing autism research.  With the passage of 3 years though I have  become a less enthusiastic IACC booster.  Both the Canary Party and the Elizabeth Birt Center for Autism Law and Advocacy (EBCALA) have called for an accounting from the IACC and its leadership. I support their calls for accountability.  

Autism advocate representatives on the committee have been anti-cure ideologues while autistic persons seeking cure like Jonathan Mitchell are ignored in every sense of the word.  The IACC, despite paying lip service to gene environment interaction has for the most part continued to subscribe to the "it's gotta be genetic" belief system for explaining what causes autism. 

During the IACC existence, and during the 14 years since my son's autistic disorder diagnosis,  autism diagnosis rates have literally exploded. Yet the IACC makes no serious effort to address this burgeoning rate and allows the public to believe the tired, repetitive, and unsubstantiated excuses that every single reported increase in autism is due entirely to mid 90's diagnostic definition changes, enhanced awareness and diagnostic substitution motivated by parental desire to obtain all those wonderful autism services that apparently exist in every school district in the US.

I am not anti-IACC but I do believe there should be some accounting provided.  As the Autism Gadfly Jonathan Mitchell has said non-Americans, including Canadians like me, have no right to DEMAND anything from an American taxpayer funded institution but the IACC has an important role to play in autism research and, like many US institutions, has a world wide impact.  As a Canadian autism dad I ask the IACC to provide a real world accounting of its efforts.  Are we any closer to understanding autism causes? Will the IACC continue to politely ignore the environment side of the gene environment base of autism disorders?  Will we actively direct our research towards cures and treatments?

If I have been too one sided I invite anyone reading this blog, including the academics and researchers who occasionally humor this autism dad with a visit to my blog, to please provide examples of real world results achieved by the IACC or indicate where the IACC is going and whether it still hopes to find causes, cures and treatments for the increasingly diagnosed autism disorders.

Autism Speaks Walks the Plank

There was a time when I was an enthusiastic supporter of Autism Speaks. That time has passed. I apologize to anyone who might have been influenced by my earlier support to view Autism Speaks as a legitimate spokespersons for those severely affected by autism or the parents fighting to help their children who are truly and seriously affected by autism disorders.

AS has raised the profile of autism around the world, worked together with the state of Qatar to establish World Autism Awareness Day, and raised funding for autism research. When some of the research money went to notorious anti-cure "autism" researchers like Dr. Laurent Mottron I began to have serious doubts about Autism Speaks. It began to look like a bureaucracry shifting with the winds of political correctness as defined by a few major media organizations which seldom portrayed autism as functional disorder which restricts the lives of many with Autistic Disorder and  some with Aspergers Disorder. The bringing on board of successful businessman John Elder Robison as an "autism" self advocate was a serious alarm.  The final alarm though is the recent affiliation with Alex Plank, an allegedly "Aspergian" young man who is also very successful socially, and in the world of the internet, a young man whose web site, amongst other trashy commentary, praised the fact that Dr. Ivar Lovaas had died recently. 

Autism's Gadfly, Jonathan Mitchell, has written an excellent commentary, Mr. Robison Goes to Washington,  on the ill advised role of John Elder Robison as a science adviser for Autism Speaks, an organization which apparently no longer speaks for parents of children with autism, or for autistic persons like Jonathan Mitchell, who would like to see more research aimed at finding a cure for autism disorders.  In the following video, co-sponsored by Autism Speaks, Alex Plank, John Elder Robison's son and an allegedly "Aspergian" young lady mock various toys sold at an autism conference.   Whether the toys are of any therapeutic value, whether autistic children or any children, enjoy playing with them I don't know. What is offensive is the sight of these very capable young people, including Mr. Plank who makes reference to his Land Rover,  mocking the efforts of parents to help their children whether those efforts are ultimately successful or not. The video is set in front of bookshelves filled with books and obviously these are intelligent young people in the video even if their sense of humor is offensive as I in find it to be.  

The mocking humor displayed by Mr. Plank and young Mr. Robison is  mild stuff by the standards at Mr. Plank's Wrong Planet web site where the death of Dr. Lovaas was cheered and parents seeking cures are routinely mocked and derided by self professed Auties" and "Aspies".  Why these obviously intelligent people,  including John Elder Robison,  huddle together under the banners of what are, by definition, mental disorders defined in the DSM, is beyond me. 

What is clear is that Autism Speaks has abandoned any pretense of seeking to  speak for the families of seriously autistic children  and autistic adults who seek cures for their autism disorders.

Autism Speaks, and its integrity, have walked the Plank.


Dr. Thomas Armstrong Romanticizes Autism Disorders and Autism's Gadfly Holds Him Accountable

Yesterday I commented in Synaptic Disorder Instead Of Autism Spectrum Disorder? on the romanticization of autism disorders by those who subscribe to the Neurodiversity ideology.  At Autism's Gadfly Jonathan Mitchell has dissected a very blatant example of  romanticization and misrepresentation of autism disorders. 

In Thomas Armstrong's book on neurodiversity Jonathan describes as offensive the title of Dr. Armstrong's new book "Neurodiversity discovering the extraordinary gifts of autism ADHD, Dyslexia and other brain differences. "  I agree with Jonathan's description of the book title as offensive. I  refer you to Jonathan's commentary for the details but, as the father of a boy who is severely affected by Autistic Disorder, whose life will be one of living dependent on the care of others,  I am sick and tired of careers being made, and books being sold, by people promoting flimsy, unrealistic, misrepresentations of autism based on the  successes of a few high functioning persons with autism or Aspergers.  

As I said yesteday, maybe it is time to drop the "autism" label altogether and look at Autism Disorder as Synaptic Disorder.  "Synaptic" doesn't sound like it would be as  easy to market, and misrepresent to a gullible mainstream media, as "autism".

Neurodiversity's Extremist Autism Cure Opponents - By What Right Do They Object?

The declaration has been made by celebrity "autists"or "autistics" like Michelle Dawson, Amanda Baggs, Ari Ne'eman and various Neurodiversity bloggers that ""We", persons with autism spectrum disorders, do not want to be cured".

These persons with mild autism spectrum disorders, including Aspergers, routinely declare that "autistics" do not want to be cured, should not be cured, and in fact can never be cured. Their implied claim to omniscience aside, by what right do these people purport to speak on behalf of other people's children, on behalf of people much more severely affected by autism disorders than they with whom they have little in common, and even on behalf of higher functioning autistic persons who oppose their ideological opposition to curing autism?

The same people who object to Autism Speaks, who turn out in massive droves of 5, 6 and even 7 people to protest at large Autism Speaks rallies of thousands of parents and autistic people, and who dwell in the lavish attention of CNN, the NYT, CBC, the New Yorker and other mainstream media outlets, demand the right to impose their ideological opposition to autism cure on my severely autistic son and the children of other people with autistic children. On what grounds do they claim this right?

Do I have the right to demand that Ari Ne'eman seek a cure for his very high functioning Aspergers? Do I have the right to tell Michelle Dawson who excelled in the challenging work environment at Canada Post, appeared as an "autistic" in the Supreme Court of Canada and before a Canadian Senate committee to oppose ABA for autistic children in Canada that she must seek a cure for her unspecified autism spectrum disorder? Do I have the right to tell Amanda Baggs, the author of many very sophisticated disability essays on autism and other medical conditions and the producer of videos depicting what she considers autistic stimming, that she must seek a cure for her autism spectrum disorder?

The answer, of course, is NO. And Ari, Michelle, Amanda and other ideological opponents of curing autism have no right to oppose or interfere with attempts by families, governments and society to cure their own autistic children or to cure those autistic adults like Jake Crosby and Jonathan Mitchell who seek cures for themselves.

I have a message for Ari, Amanda and Michelle: I do not seek to cure you of your Aspergers or high functioning autism disorders. Do not claim the right to speak on behalf of my severely autistic son. You have no right to interfere with efforts by me, or other parents, seeking to help or cure our autistic children. None at all.

Someday, hopefully, even if you do not, the dilettante autism journalists at the NYT, the CBC and other MSM outlets will come to understand that you are interfering with the basic rights of families and parents to help their own children.




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Has Autism Speaks Abandoned Severely Autistic Persons and Their Families?

I am not an Autism Speaks basher.

I have criticized specific decisions it has made such as the funding of research by Dr. Laurent Mottron who believes that the idea of curing autism is nonsense. I am appreciative though of the great work Autism Speaks has have done in raising awareness of autism around the globe including its work, in conjunction with the State of Qatar, in creating World Autism Awareness Day. A couple of days ago I thanked Autism Speaks on this blog site for the I Am Autism video which speaks some of the harsher truths about autism, particularly the severe ... and original ... autism.

But Jonathan Mitchell, at Autism's Gadfly, and Roger Kulp, who commented on this site, are correct. Autism Speaks has "kowtowed" to the Neurodiversity movement led by a gentleman with Aspergers and some Aspergers and High Functioning Autism followers. Autism Speaks has removed the I Am Autism Video from their main web site pages.

The barely autistic have once again succeeded in suppressing free expression about the harsher truths of autism, the harsher realities confronting those who would be classified as autistic BEFORE the DSM definition was expanded to include those with good or excellent intelligence, good command of language and who can have good social skills. These are the people who rise up in protest and condemn parents such as those who actually created the "I Am Autism Video" ... because they dared speak the truth. They are the people who do not want the world to know about the original, now barely visible, autistics with severe autism challenges.

Autism Speaks did not stand behind the parents who created the Autism Speaks video. By "kowtowing", as Autism's Gadfly put it, Autism Speaks has taken a huge step toward abandoning the severely autistic and their families. I have been a supporter of Autism Speaks but that support is beginning to fade as this once helpful organization aligns itself with those who do harm to the interests of the severely autistic that Autism Speaks once helped.




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New Wave Autism Self Advocacy: Stephanie Lynn Keil Offers A Different Perspective

If you are interested in new developments in autism self advocacy and awareness and want to avoid the tired "we don't want to be cured" ideology check out those who are presenting new perspectives in autism self advocacy. Jonathan Mitchell, Autism's Gadfly, and Jake Crosby at Age of Autism don't take their cues from the Neurodiversity playbook. Another vital new point of view is offered by Stephanie Lynn Keil an artist and person with an autism disorder who doesn't subscribe to the old rhetoric of Sinclair, Dawson, Baggs and Ne'eman.

In Improve Self, Not Society Stephanie refuses to focus on society as a means of addressing her challenges, choosing instead to focus on her own role in the world and what she can do for herself. She does not want to become a "career autistic" and sees a better way to deal with her challenges:

"I can't wait for society to accommodate me: I need to accommodate myself to society now. I can change myself in much less time than I can change society, which is why I am taking this route."

Stephanie's views are anathema to those who promote autism disorders as social constructs, natural variations, a different, even superior, ways of thinking. The Neurodiversity Hub is not kind to autistic persons like Jonathan Mitchell, Jake Crosby or Stephanie Lynn Keil, those who think for themselves, look to improve themselves and overcome their deficits. By their words they have proven false the implied claim by some self appointed autism disorder spokespersons that all persons with autism do not want to be cured.

For a different perspective on autism self advocacy visit Stephanie Lynn Keil's blog site A Grand Illusion and check out her art work at Stephanie Lynn Keil.




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Autism Severity

The DSM V committees drafting revisions to the manual are considering distinguishing between autism disorders based on severity or level of functioning. Some autism "self" advocates have long complained about distinguishing between functioning levels of autism disorders based on functioning labels - HFA, high functioning autism, or LFA, low functioning autism. Some object to the division of autism disorders according to severity.

The DSM-IV already implicitly recognizes these differences by specifying with respect to Aspergers Disorder that:

D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

Language, cognitive development, age-appropriate self-help skills, adaptive behavior (other than in social interaction and childhood curiosity about the environment are all basic elements of functioning in the "environment" .... in the real world. By definition persons with Aspergers Disorder diagnoses do not lack these important elements of real life functioning ability. The criteria for Autistic Disorder by contrast is based in part on the presence of some or all of these components of real life functioning. The persons who suffer from Autistic Disorder are by definition more severely affected by autism deficits than persons with Aspergers Disorder.

My son Conor is severely autistic. That is a fact of life with which we have to deal every minute of every day. He does not possess the communication skills or understanding of the world displayed by Michelle Dawson, Amanda Baggs or Ari Ne'eman. These people can communicate with the world and demonstrate intellectual skills and understanding of the world far beyond what can be imagined for my son. It is silly, just plain silly, and nothing more than that, to pretend that there are not significant differences in functioning levels and understanding between these three examples of high functioning autistic persons who have spent much time in front of television cameras articulating their views of autism disorders and the world and my 13 year old son who reads Dr. Seuss and can not, for his own safety, be left unattended.

As I understand from the Internet Ms Baggs was either at, or about to enter, a college for gifted youth at a similar age. Ms Dawson is a person who, in addition to being an excellent letter carrier in the very challenging world of Canada Post, was able to become an autism researcher, make representation to the Supreme Court of Canada (where she opposed government provision of ABA treatment to autistic children) and to a Canadian Senate committee examining autism treatment and funding issues. Ari Ne'eman is the head of an organization based in Washington DC who regularly appears before cameras, and meets with political and public bodies, declaring on behalf of all autistic persons, including presumably my son and other autistic persons like Jake Crosby and Jonathan Mitchell, that "they", autistics, do not want to be cured.

As a parent of a much more severely affected son with autistic disorder I am tired of the silly attempts to deny the obvious differences between those who can function well like Dawson and Ne'eman and those like my son who require 24 hour supervision. I have visited adult autistic persons living in psychiatric facilities in New Brunswick who can not function in the real world AT ALL let alone make representations to judicial, political and legal institutions or engage in autism research or advocacy.

My son can not speak to the world. But Ari Ne'eman, Amanda Baggs and Michelle Dawson do not speak for him. They do not share his realities. They are not affected by autistic disorder as he is and they show no real awareness of the very real differences between his reality and theirs in their sweeping generalizations about autism and what "autistics" want.

The DSM V committee attempt to distinguish between levels of autism severity or functioning is a step in the right direction. Look for a determined effort from Mr Ne'eman, Ms Baggs and Ms Dawson, and their followers, to oppose that direction. After all, if the obvious differences between high functioning persons with autism and those, like my son, who do not enjoy their gifts, are expressly acknowledged, the self appointed "self" advocates ability to speak on behalf of those much less fortunate autistic persons would be seriously diminished in the eyes of the public and more importantly in the eyes of reporters from the CBC, CNN, the New Yorker Magazine and Newsweek who cater to their wishes.

Focusing on differences in autism severity would, however, bring needed attention to the challenges faced by the severely autistic some of who currently live out their lives in institutions. A couple of years ago a middle aged autistic woman in New York was regularly abused by staff but could not communicate with the world to tell of the abuse. The matter came to light because of a conscientious staff member and video recordings which captured some of the abuse. The plight of that woman, her life challenges and realities, are much different that those of the high functioning autistic media stars who barely acknowledge the existence of the severely autistic and do not display any understanding of their realities.

If the DSM V does differentiate between autism disorders based on functioning levels, or severity levels, it will be a much needed step toward helping those severely autistic who can not speak for themselves. It will help to ensure that their needs, so different than those of media trotting, high functioning "self" advocates will be met. It will be a much needed step in the right direction.

It is time for the low functioning, severely autistic, to be acknowledged and their needs addressed.




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Autism's Gadfly Takes lbrb's Kev Leitch to Task for Absurd Neurodiversity Logic

Autism's gadfly, Jonathan Mitchell has written a comment taking lbrb's Kevin Leitch to task for his loopy defense of Neurodiversity. In Left brain, right brain or no brain, Jonathan, as always, is exceedingly polite, a quality of discourse not always found at lbrb and other ND sites when trashing Jonathan for refusing to drink the Neurodiversity Kool-Aid.




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Autism's Gadfly Does Some Neurodiversity Myth Busting

Jonathan Mitchell does some Neurodiversity myth busting in his recent post More mythology from neurodiversity. Jonathan is commenting on the Dan Marino promoted video by Ari Ne'eman, a gentleman with Aspergers Disorder, and some other persons, at least one of whom is hard to believe has any type of autism spectrum disorder diagnosis, and their creation of new Neurodiversity flavored autism myths.

Jonathan suffers from a mild autism spectrum disorder. While he and I do not agree on all autism related issues I have great respect for his honesty. Jonathan's honesty is not held in the same esteem though by Neurodiversity ideologues who are angry at him, as an autistic person, for refusing to drink the Neurodiversity Kool-Aid.

Jonathan addresses a number of ND Myths in this comment, including one of my often repeated criticism's: the insistence of someone like Ari Ne'eman, a very intelligent, highly articulate, high functioning individual, diagnosed at age 12 with Aspergers Disorder after initially being diagnosed with ADHD, to pretend to be able to speak on behalf of ALL persons on the autism spectrum of disorders even the most severely affected by Autistic Disorder. Ari Ne'eman uses the royal "we" to pretend to speak about autism disorders on behalf of people he has never met, with whom he has nothing in common and, as in the case of my son, with whom he does not have the same autism spectrum diagnosis.

My son Conor has Autistic Disorder, assessed with profound developmental delays. He has absolutely nothing in common with Ari Ne'eman, previously diagnosed with ADHD, and now diagnosed with Aspergers Disorder. Conor's Autistic Disorder deficits include limited communication and understanding of abstract concepts. He engages in self injurious and occasionally aggressive behavior and he will NOT, like Mr. Ne'eman, live an independent life, attend college and pose in numerous media interviews in which he purports to speak on behalf of anyone, including himself.

Read Jonathan Mitchell's More mythology from neurodiversity comment if you want an honest, informed analysis of Neurodiversity myth making nonsense.




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Autism's Phony War

Autism has almost become a synonym for controversy.

The role that vaccines play, or do not play, depending on which camp one is a member of, generates the most heat and is often described as the vaccine-autism war, on this blog, generally, and by respected experts like Dr. Bernadine Healy. One issue that also generates controversy, and has been described as a "war", is the issue of whether autism should be cured or not. Unlike the vaccine-autism war though this war is a phony war, one that does not involve a serious contest between legitimate interests.

In the vaccine-autism war the public has a legitimate interest in ensuring the continuation of public vaccine programs. Parents concerned about their children also have a legitimate interest in ensuring the safety of substances injected often and directly into the bodies of their young children at early ages, including the first day they are born, and even while in the womb through vaccination of pregnant women. These intense and legitimate interests, generate much legitimate controversy.

Even the financial interests of pharmaceutical companies and vaccine patent holders like Dr. Offit are legitimate. Vaccines have saved many lives and without the financial interests of pharmaceutical companies and vaccine patent holders vaccines would not be produced. These competing, but legitimate interests, generate a real "war" in public discussions.

In autism's phony war there are no legitimate competing interests. The heat that does exist in public discussion of autism cures is generated largely by those with no legitimate interest in whether a cure for autism is found or not. The anti-cure "movement" is essentially the ideology of a few persons with High Functioning Autism (HFA) and Aspergers. These are generally intelligent, articulate people who can speak for themselves and who do not want to be cured of their autism disorders. All well and good. The thing is ....... no one is trying to force a cure on them for THEIR autism conditions.

No one, to my knowledge, is trying to force Michelle Dawson, Ari Ne'eman, Amanda Baggs, Alex Plank or any of the other HFA or Aspergers media regulars to seek a cure. These people speak about their opposition to curing autism in the abstract at best. At worst they are trying to interfere with the rights of other autistic people to obtain a cure and the rights of parents to seek a cure for their childrens' autistic disorders.

Jonathan Mitchell author of the Autism's Gadfly blog is a person with an autism disorder who has received the hostility of the anti-cure Neurodiversity autism bloggers because he does not accept their ideology. He has expressed the desire to be cured of his autism disorder. That is his right and his right alone. Harold Doherty does not have the right to tell Mr. Mitchell to be cured or not of his autism. Neither do Michelle Dawson, Amanda Baggs, Ari Ne'eman, Alex Plank or any other anti-cure autism ideologues.

For daring to express a desire to be cured of his autism Jonathan Mitchell has been described by one Neurodiversity extremist, "Timelord", as an autistic Joseph Goebbels. Timelord has also started a blog site specifically to target Jonathan Mitchell whom he smears wrongfully as a coward and a traitor, Mitchell's Gadfly. Timelord is a 40 year old unemployed Australian with Aspergers as described on his posted profile at another site he authors:


What right does Timelord Phil, an unemployed 40 year old, diagnosed with Aspergers Syndrome, have to tell Jonathan Mitchell, an autistic adult, that he should not seek to be cured of his autism? The obvious answer is: none. He has no right to oppose Mr. Mitchell's right to seek a cure. Period. When an autistic adult seeks a cure for his autism disorder other autistic adults have no legitimate competing interest and there is no real conflict, there is no real "war".

Some autistic persons, including children and adults, lack the cognitive and communication skills to live independently in the real world. Some injure themselves. Parents have a legitimate interest, a responsibility and a duty, to act to help their children develop to their fullest potential and to prevent injury to their autistic children when they seek to injure themselves. There is no competing societal interest. To the contrary society has an interest in ensuring that autistic persons are able to be cured of a disorder which causes serious pain and suffering and results in lives of dependency, often at state expense.

Self-injury is a problem for many people with autism disorders. I have seen it and shown it on this blog site with pictures of my son's self inflicted bite marks on his hands and wrists. Neurodiversity icon Michelle Dawson also testified about her personal autistic self injury in her Canadian Human Rights Tribunal proceedings Dawson v. Canada Post Corporation, 2008 CHRT 41. In that cased Ms Dawson brought several complaints against her former employer Canada Post Corporation alleging that CPC discriminated against her based on her disability: autism. The Tribunal rejected some of her complaints but found that some CPC employees had harassed Ms Dawson because of her disability and that CPC was responsible for the acts of its employees and officers.

In rendering its decision the CHRT summarized Ms Dawson's evidence and in particular Ms Dawson's own testimony about her self injurious behavior:


[58] Ms. Dawson testified that after she disclosed her diagnosis to Canada Post, everything went wrong. Before that time, even though Ms. Dawson came to work with self-inflicted injuries, this did not seem to create any qualms or concerns with respect to Canada Post. Things started to change, she stated in her testimony, after some Pierrefonds employees felt threatened by Ms. Dawson and sent a letter to that effect to Ms. Daoust in July 1999.


...


[97] In her testimony, Ms. Dawson spoke about her self-inflicted injuries. Ms. Dawson testified that, at the very worst, there was probably a week or two weeks where two weeks in a row, she would have something, that she would injure herself. She added, however, that this would be rare. According to her, she would self-injure about once a month and never more. She testified that for cuts, it would not be more than one small area affected and not more than one or two cuts, but they would be in the same place.


[98] Ms. Dawson testified that, well before Canada Post knew she was autistic, she would show up at work with self-inflicted wounds, that she did not suddenly start showing up with obvious signs of self-injury in 1999. According to her, any time after 1990, she would have had at times signs of self-injury, sometimes more than at other times, sometimes with long gaps.


Even the expert witness Dr. M, who, based on the Tribunal's description, was obviously Dr. Laurent Mottron, and who promoted his own pet theories about autism intelligence, acknowledged that autistic persons "sometimes" engage in self injurious behavior:


[110] Dr. M. testified that, while the ordinary person will become aggressive when anxious, autistic individuals will sometimes self-injure. This is especially the case, according to Dr. M., when an autistic person cannot understand a situation or cannot get an answer to a question. According to Dr. M., self-injury is the most extreme response to a psychological impasse that has no solution. It is a response to a disorganization of the world. It is the way for an autistic person to respond to negative situations whereas non autistic persons will show anger. Dr. M. stated in his testimony that he was aware of Ms. Dawson self-injury behavior. He had seen one of the wounds she had inflicted upon herself. For Dr. M., a self-inflicted injury is a sign of a deep psychological suffering.


I can't pretend to have any great respect for Dr. Mottron's views of autism generally. I don't care how many learned articles he has written based on his studies of persons with High Functioning Autism, Aspergers and Autistic Savants, his views about autism generally are inconsistent with what I have seen in my son with Autistic Disorder, with the knowledge that I have from working as a lawyer with families with autistic children and Aspergers, my involvement in autism advocacy in New Brunswick and my visits to psychiatric facilities where some autistic adults live out their lives in the care of strangers. Nonetheless even Dr. Mottron acknowledges that self injury is "sometimes" a feature of autistic behavior.

For the record here is a re-post of a picture of my son's self inflicted bite mark on his hand. (Dr. Mottron should also be informed that with ABA we have been able to increase our ability to communicate with Conor, he with us, and reduce such self injurious behavior) :


Those who oppose cures for themselves or for their autistic children have no right to oppose the development of autism cures for autistic adults like Jonathan Mitchell or for children whose parents seek a cure for their disorders. There is no legitimate basis for fighting to ensure that autistic children, particularly severely autistic children, should be prevented from being cured of a disorder which results in some cases in cognitive impairment, lives of dependency, and self injurious behavior. There is no legitimate basis to oppose the rights of parents to help their children live the best life possible without suffering from a debilitating neurological disorder.

Autism has many wars the cure or don't cure controversy though is a phony war between those with a legitimate interest in curing themselves of their autism disorder or their own children and those who oppose that right on abstract, ideological grounds.

Autism's phony war generates unnecessary heat and gives governments and service provides an excuse to refrain from providing needed services and funding for research. It does a great disservice to autistic adults seeking cures and for autistic children whose parents, acting in their children's best interests, and with the responsibility to do so, seek to cure them.

NOTE: At the request of Timelord Phil his picture has been removed from the profile posted above. The picture seemed innocuous to me, a picture of a guy in a black and white striped referee's jersey with his arms crossed, but it is his image and his request.




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A Canadian Autism Dad Says Thank You To The IACC


My friend Jonathan Mitchell, author of the Autism's Gadfly, blog, challenges the right of non-Americans to make demands of the IACC which has released The Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research - January 26, 2009.

I agree with Jonathan that Canadians, British and other non-Americans have no right to demand anything from American tax payer funded institutions. The IACC plan, after all, is distributing American tax dollars. At the same time we enjoy freedom of speech in our countries as well and the world wide web makes all of our opinions available for consumption. American agencies such as the IACC may choose to review our opinions , or not , as they determine appropriate. But we have the right in our countries to express our opinions, albeit we should all do so with proper respect for , and in the context of, jurisdictional issues such as those raised by Jonathan.

American health and research authorities have generally, in my opinion, made valuable contributions to the lives of autistic children and adults in Canada. I am pleased that the IACC has adopted a strategic plan which makes this positive influence likely to continue. In my humble opinion the plan might even enhance the positive role of American researchers and public health authorities in the lives of autistic children and adults in Canada and other countries. The world's knowledge of autism itself, of its causes and possible treatments and cures, will likely be substantially increased with the realization of this strategic plan.

The plan covers a lot of ground, it is balanced and comprehensive in its scope. It is respectful of diverse perspectives and suggests an accommodation of those perspectives in effective autism research initiatives. On an initial reading of the IACC plan there are a number of points that jump out at me. There is too much to canvass in this post. Everyone should read the plan themselves and review it.

I will make several comments about the various elements of the plan in subsequent posts but first and foremost I am impressed by the focus on attempting to find causes and cures for autism disorders, to help improve the lives of autistic persons and their families.

Overall I am very pleased with the research emphasis on possible environmental factors in causing or triggering autism disorders:

What do we need?

Although most scientists believe that risk factors for ASD are both genetic and environmental, there is considerable debate about whether potential environmental causes, genetic precursors, or interactions between genes and environmental factors should be the highest priority for research aimed at identifying the causes of ASD. To date, few studies have ruled in or ruled out specific environmental factors. While there are reports of associations of ASD with exposure to medications or toxicants prenatally, and to infections after birth, it is still not known whether any specific factor is necessary or sufficient to cause ASD. Similar to other disease areas, advancing research on the potential role of environmental factors requires resources and the attraction of scientific expertise. Bringing this to bear on autism will help focus the environmental factors to study, as well as the best approach for staging studies to examine environmental factors, interaction between factors, and between individual susceptibility and various environmental factors.

For example, some researchers believe that it is important to study a large number of exposures, or classes of exposure, that are known to affect brain development. Others support more tightly focused studies of one exposure or a limited number of exposures, with greatest biologic plausibility for interacting with known or suspected biologic or genetic ASD risk factors. In addition, it is also important to design studies that assess environmental exposure during the most relevant exposure windows: pregnancy and early development. In doing this research, it will be important for the field to develop sound standards for identifying and claiming that environmental factors contribute to ASD, as it would be for genetics.


To address public concerns regarding a possible vaccine/ASD link, it will be important over the next year for the IACC to engage the National Vaccine Advisory Committee (NVAC) in mutually informative dialogues. The NVAC is a Federal advisory committee chartered to advise and make recommendations regarding the National Vaccine Program. Communication between the IACC and NVAC will permit each group to be informed by the expertise of the other, enhance coordination and foster more effective use of research resources on topics of mutual interest. Examples of such topics include: studies of the possible role of vaccines, vaccine components, and multiple vaccine administration in ASD causation and severity through a variety of approaches; and assessing the feasibility and design of an epidemiological study to determine whether health outcomes, including ASD, differ among populations with vaccinated, unvaccinated, and alternatively vaccinated groups.


Aspirational Goal: Causes of ASD will be Discovered that Inform Prognosis and Treatments and Lead to Prevention/Preemption of the Challenges and Disabilities Of ASD

Research Opportunities

* Genomic variations in ASD and the symptom profiles associated with these variations.

* Environmental influences in ASD and the symptom profiles associated with these influences.

* Family studies of the broader autism phenotype that can inform and define the heritability of ASD.

* Studies in simplex families that inform and define de novo gene differences and the role of the environment in inducing these differences.

* Standardized methods for collecting and storing biospecimen resources from well-characterized people with ASD as well as a comparison group for use in biologic, environmental and genetic studies of ASD.

* Case-control studies of unique subpopulations of people with ASD that identify novel risk factors.

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

* Environmental and biological risk factors during pre- and early post-natal development in "at risk" samples.

* Cross-disciplinary collaborative efforts to identify and analyze biological mechanisms that underlie the interplay of genetic and environmental factors relevant to the risk and development of ASD, including co-occurring conditions.

* Convene ASD researchers on a regular basis to develop strategies and approaches for understanding gene - environment interactions.

* Exposure assessment -- efficient and accurate measures of key exposures for use in population and clinic based studies and standards for sample collection, storage, and analysis of biological materials.

Short-Term Objectives

* Initiate studies on at least five environmental factors identified in the recommendations from the 2007 IOM report "Autism and the Environment: Challenges and Opportunities for Research" as potential causes of ASD by 2010. IACC Recommended Budget: $23,600,000 over 2 years.

* Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 for sequencing studies to examine more than 50 candidate genes by 2011. IACC Recommended Budget: $43,700,000 over 4 years.

* Within the highest priority categories of exposures for ASD, identify and standardize at least three measures for identifying markers of environmental exposure in biospecimens by 2011. IACC Recommended Budget: $3,500,000 over 3 years.

* Initiate efforts to expand existing large case-control and other studies to enhance capabilities for targeted gene - environment research by 2011. IACC Recommended Budget: $27,800,000 over 5 years.

* Enhance existing case-control studies to enroll broad ethnically diverse populations affected by ASD by 2011. IACC Recommended Budget: $3,300,000 over 5 years.

Long-Term Objectives

* Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the pre- and early postnatal period of development by 2015. IACC Recommended Budget: $25,100,000 over 7 years.

* Conduct a multi-site study of the subsequent pregnancies of 1,000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014. IACC Recommended Budget: $11,100,000 over 5 years.

* Identify genetic risk factors in at least 50% of people with ASD by 2014. IACC Recommended Budget: $33,900,000 over 6 years.

* Support ancillary studies within one or more large-scale, population-based surveillance and epidemiological studies, including U.S. populations, to collect nested, case-control data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed), to analyze targets for potential gene/environment interactions by 2015. IACC Recommended Budget: $44,400,000 over 5 years.

The environmental focus of the strategic plan includes possible vaccine-autism connections. As one who is undecided on the vaccine-autism connections I believe this is a positive step forward. Anyone wishing to explore this issue in should read David Kirby's essay on the Huffington Post US Health Officials Back Study Idea on Vaccinated vs. Unvaccinated Children - Will Media Take Note?. The IACC strategic plan expressly states that it will consult with the National Vaccine Advisory Committee whose recommendations are reviewed by Mr Kirby in his article.


Ten years after Teresa Binstock complained about the "it's gotta be genetic" model of officially funded autism research and the impairment of our knowledge of autism causes, and possible treatments that results from that model, it appears that the IACC is moving toward a balanced genetic-environmental paradigm of autism research. The genetic-environmental paradigm embraced fully by the IACC bodes well for our future understanding of, and ability to treat, autism disorders. The Autism Knowledge Revolution is poised to pick up steam.

For this balanced, comprehensive strategic plan this Canadian father of a 13 year old year old with autistic disorder makes no demands but says thank you to the IACC and our American friends.




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autism's gadfly, A Name Well Chosen, A Blog Worth Visiting

If you want to read a good "autism" blog check out autism's gadfly hosted by Jonathan Mitchell. He is truly a straight shooter who calls it the way he sees it. And doesn't mind, or maybe enjoys, challenging anyone's autism beliefs and opinions. Although Jonathan is an adult with autism he is not anti-cure and does not embrace the Neurodiversity/Autism Rights ideologies - the full title of his blog is "autism's gadfly I don't need no stinkin' neurodiversity"

I enjoy reading Jonathon's comments even though we disagree on many points, particularly ABA. As he puts it on his web site Jonathon is pro-cure, anti-neurodiversity, anti-special ed, anti-ABA. Not being a fan of the Neurodiversity/alleged Autism Rights Movement I enjoy the shots he takes at the leaders of those "movements" although I wince when he calls parents well intentioned but misguided for advocating for specific treatments, including ABA.

Good Morning America should do their viewers a favor and grant Jonathan the equal time he requested as an autistic person who does not share the Neurodiversity views advocated on their show by alleged Autism Rights advocate Ari Ne'eman. (Mr. Ne'eman was also accompanied by autism parent Kristina Chew who has embraced the sweet surrender of the anti-cure Neurodiversity movement.)

Not all autistic persons, even those who are high functioning, share Mr. Ne'eman's views. And not all agree with the heated rhetoric of Michelle Dawson. autism's gadfly is one that does not. His unique perspective is well worth reading.

Autism's "Royal We"

Autism discussions are often marked by the use of the "Royal We" (or its variation the "Royal Us") in which some persons with either Aspergers or high functioning Autism implicitly speak on behalf of all persons with autism. Wikipedia explains the Royal We:

Pluralis majestatis

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Pluralis majestatis ("majestic plural") is the plural pronoun where it is used to refer to a single person holding a high office, such as a monarch, bishop, pope, or university rector. It is also called the "Royal 'we'" or the "Victorian 'we'." The more general word for the use of we to refer to oneself is nosism.[1]

The idea behind the pluralis majestatis is that a monarch or other high official always speaks for his or her people.[citation needed] For example, the Basic Law of the Sultanate of Oman opens thus:

On the Issue of the Basic Law of the State We, Qaboos bin Said, Sultan of Oman…[2]

Famous examples of purported instances:

  • We are not amused. — Queen Victoria (in at least one account of this quotation, though, she was not speaking for herself alone, but for the ladies of the court.[citation needed])
  • The abdication statement of Nicholas II of Russia uses the pluralis majestatis liberally, as in "In agreement with the Imperial Duma We have thought it well to renounce the Throne of the Russian Empire and to lay down the supreme power."[3]

Arguably the most famous use of the Royal We is the essay by Jim Sinclair "Don't Mourn For Us". Apart from the title Don't Mourn For Us is rich in Royal We declarations"


I invite you to look at our autism, and look at your grief, from our perspective:

This is what we hear when you mourn over our existence.

This is what we hear when you pray for a cure.

This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

But don't mourn for us. We are alive. We are real. And we're here waiting for you.


"King Jim" Sinclair went well beyond the Royal We in presuming to speak on behalf of all autistic children including those with Autism Disorder, some of whom lack his considerable intellectual and communication gifts. He also used his Royal Insight to tell parents of children newly diagnosed with autism what they were thinking and feeling in responding to the realities of their children's diagnoses. "We" were in fact mourning the child we should have had, wishing we could replace the people behind our children's faces with entirely new non-autistic people. Bad, bad parents, we should all be banished to the stocks. And if you can believe some of essays by parents of autistic children praising autism as a different perhaps better way of thinking and living, praising the joy of autism, it appears they at least heard the Royal message. Treatment bad, cure bad, ABA bad, autism good, autism joyful.

Of course no mention of Autism's Royal We would be adequate if it made no reference to another very high functioning autistic adult, diagnosed as an adult, who also uses the Royal We in her relentless anti-ABA campaigns before courts, Parliament and the media in Canada. In The Word Is Out About Autism, Canada In The Era Of Autism Advocacy Michelle Dawson also made extensive use of the Royal We, "Queen Michelle" told the Canadian Senate Standing Committee
on Social Affairs, Science, and Technology that:


There is no consideration of who autistics might be and what we might need. Either we are horribly sick or we aren’t, depending on what non-autistics need.

Either we are horribly sick or we aren’t, depending on what non-autistics need.

we are most reliably defined by our strengths, our innate autistic strengths, which exist in all autistics regardless of how our level of functioning is judged.

1. That this Committee, and the Senate as a whole, apologize to autistic Canadians, for using your power and resources to promote and distribute false and pejorative information about autistics which is likely to be damaging and dangerous to us.

3. That the above-mentioned final report make it clear that autism is not a mental illness; that autism is receiving a great deal of attention due to the efforts of autism advocates; and that this attention, because it arises from factually false and ethically indefensible portrayals of autistic people, has harmed and damaged us.


Apparently though, not all higher functioning autistic persons reside in the Royal Autism Courts of King Jim or Queen Michelle. In Autistic Blogger Jonathan Mitchell Says NO To Neurodiversity I commented on a blog, NEURODIVERSITY: JUST SAY NO , by Jonathan Mitchell, an autistic person who rejects the anti-cure, anti-treatment, ideology promoted by Sinclair and Dawson and who asserts that some autistic persons DO wish to be cured. That post prompted some hostile, personal attacks on Mr. Mitchell which prompted my follow up commentary "House Autistic" Or More Neurodiversity Trash Talk.

Mr. Mitchell challenged the assumption that the anti-cure ideologies of some autistic persons represented the views of all autistic persons and for that was decried as a "liar":

A number of high functioning autistics claim that there is a consensus among all autistic persons that finding a cure for autism would be a horrible thing. Autism is a part of who they are and to take away the autism is to take away the person. They go further to claim that autism is not really a disorder but just a different form of brain wiring--some call this philosophy "neurodiversity".

Some of them do acknowledge that autism is a disability. However, there is a distinction between a medical model of disability-wherein the person has a disease state and the social model of disability--the disabled person would not be at a disadvantage if society made accommdoations for them.

I am a diagnosed autistic, nonverbal, feces smearing at age 3, 8 year veteran of special education yet I do not share this view. I long for a cure for autism though a cure at age 52 is not the same as at age 3, even in the unlikely event of a cure being found in my lifetime. Somehow I got missed when they took the census. So they are incorrect about all autistics.

Mr. Mitchell is not the only autistic person who rejects the anti-cure ideologies of King Jim and Queen Michelle. There are in fact other high functioning autistic persons for whom they do not speak. And it is difficult to see how they speak at all on behalf of those autistic persons with whom they have very little in common.

People as eloquent as Jim Sinclair or as intelligent as Michelle Dawson do not share the same realities of life as a much lower functioning autistic person with limited communication skills and limited understanding of the world, someone like my son Conor. Like Ms Dawson I once worked for Canada Post, albeit as a lawyer. It can be a complex and challenging work environment regardless of one's position. To be a letter carrier or postal clerk requires signficant command of language. My son does not know what Canada Post is, he does not know what a PO Box or postal code is, or what it represents.

Jim Sinclair and Michelle Dawson are free, in democratic societies, to use the Royal We in presuming to speak on behalf of all persons with Autism. But my son Conor Doherty, diagnosed at age 2, with Autism Disorder, with profound developmental delays does not sit as a subject in their courts. If safe, effective, treatments and cures are found for him then I will not hesitate to seek their application for Conor's benefit, to improve his life, to help him experience life to the fullest.

"House Autistic" Or More Neurodiversity Trash Talk

One of the unspoken truths about the neurodiversity "movement" is the extent to which ND adherents engage in Trash Talk in the form of offensive terminology like "curebie" "idiot" and even "retard" when referring to people whose views challenge their ND ideology.

Yesterday I posted about an autistic blogger named Jonathan Mitchell who wrote an article on his site urging other autistic persons and persons with an interest in autism to reject ND ideology to Just Say No to neurodiversity. I received a heated, and somewhat confused, response from someone who identified himself as "Robert Montgomery" although he provided no email address, link or url to confirm that name and I learned for the first time that autistic persons who disagree with the ND ideology are dismissed by neurodiversity adherents as "house autistics". They are also, apparently, dismissed as being liars about their past.

This particular "Robert Montgomery" seemed very upset that I had posted a comment about an autistic individual, Jonathan Mitchell, who dared reject the neurodiversity ideology. In fact he was so upset he posted his comment in response to the wrong article, posting incorrectly under my CNTNAP2 Gene And The Unravelling Of Autism Spectrum Disorders article. This alleged Robert Montgomery accuses Mr Mitchell of being a "house" autistic and declares that "sadly, like most house autistics, they lie about their past."

Show Original Post Collapse comments

Anonymous Robert Montgomery said...

There's one serious flaw to Jonathan's argument. Not many special education opportunities were available in the 1960's. I think Jonathan needs to change his story. The majority of students with recognized disabilities, and I would presume feces smearing would have been considered a disability even in the 1960's, were in segregated institutions. The IDEA wasn't passed into law until Jonathan would have been 22 years of age. Nice try though Jonathan.

This is from the Georgetown University Press:

As the United States entered the 1960s, American public schools faced challenges in several areas. Discussions regarding social and economic inequality led to intense national soul-searching, with the sweeping implications of the Supreme Court’s 1954 Brown vs. Board of Education of Topeka decision affecting developments in law, politics, social policy, and certainly education. The federal government under President John F. Kennedy determined that much greater involvement on its part was necessary to stimulate action and ensure the enforcement of law, the protection of civil rights for all Americans, and the fulfillment of the promise of public schooling. Among educational professionals, questions about the rigor and direction of curriculum and instruction dominated educational discourse after the launch of the Sputnik satellite by the Soviet Union in 1957, leading to reform efforts in the teaching of most subject areas, science and mathematics. As deliberations about the appropriate purposes, character, and methodology of education intensified, special education found itself linked, directly and indirectly, to changes in the teaching of content and subject matter, the organization and structuring of schools, and the classification and categorization of students.

From 1960 through 1968, special education would continue its dramatic evolution, encountering significant challenges to its assumptions, structures, and operations. It maintained its remarkable expansion in terms of its number of programs offered and students served, even while special educators constantly maintained that an unacceptably low percentage of students who needed special education services were actually receiving them. The introduction and solidification of learning disabilities as a recognized category of disability rearranged and expanded the identified population of children with disabilities; the linking of disability with poverty, cultural deprivation, and minority status substantially altered views on the etiology and diagnosis of disability, especially in the area of mental retardation, shifting the ways in which discussions of special education services and purposes were framed. The number of people with disabilities housed in residential institutions kept increasing, leading to severely overcrowded conditions and serious charges that care and treatment of the residents all too frequently was cruel and inhumane. Such developments took place in the context of rapidly expanding federal involvement as well as heated debate about the propriety of segregated schools and settings, including those for students with disabilities.

Harold, really, a cursory knowledge of the disability movement in the US would have tipped you off that this man could have never spent 8 years in special education.

But like John Best, your not really interested in facts and I my guess would be that this comment too will never be posted on your website. That's ok, because I'm taking screen shots of them to show the world that your a dishonest person not interested in truth.

I'm sure you think your clever because you found a "house" autistic who supports your hatred of autism and autistic people who disagree with you. But sadly, like most house autistics, they lie about their past.

7:33 PM

I personally don't know what Mr. Mitchell meant by his reference to Special Education or whether, as Mr. Montgomery contends. no such "Special Education" could have existed at the time Mr. Mitchell would have attended school but I assume that Mr. Mitchell is telling the truth about a non-controversial matter of that nature. Obviously Mr. Montgomery, at least in whatever state of mind he was in at the time he posted the above note, is very quick to jump to conclusions about other peoples' honesty and character.

I have long known of, and been on the receiving end of, the heated nature of many internet autism debates. Mr. Montgomery's post though seems beyond the pale even by those standards. Hopefully his views of Mr. Mitchell and any other autistic person who presume to disagree with Neurodiversity doctrine are not shared by other Neurodiversity adherents.

Autistic Blogger Jonathan Mitchell Says NO To Neurodiversity


One of my major complaints about the Neurodiversity movement is the tendency of some high profile autistic media personalities to speak on behalf of all autistic persons, including my son who has limited understanding of language, and limited ability to communicate. The "ND" autistic media stars tend to be anti-cure, anti-treatment with respect to autism. They do not like people discussing any of the negative realities of autism, and don't like autism to be associated in any way with intellectual disability. But not all autistic persons share the ND views. Jonathan Mitchell is an autistic blogger whose views differ from the ND club and encourages others to say NO to Neurodiversity in NEURODIVERSITY: JUST SAY NO on his blog site Jonathan Mitchell. I have extracted some of Mr. Mitchell's comments but I encourage people to visit his site and read it in its entirety:


A number of high functioning autistics claim that there is a consensus among all autistic persons that finding a cure for autism would be a horrible thing. Autism is a part of who they are and to take away the autism is to take away the person. They go further to claim that autism is not really a disorder but just a different form of brain wiring--some call this philosophy "neurodiversity".

Some of them do acknowledge that autism is a disability. However, there is a distinction between a medical model of disability-wherein the person has a disease state and the social model of disability--the disabled person would not be at a disadvantage if society made accommdoations for them.

I am a diagnosed autistic, nonverbal, feces smearing at age 3, 8 year veteran of special education yet I do not share this view. I long for a cure for autism though a cure at age 52 is not the same as at age 3, even in the unlikely event of a cure being found in my lifetime. Somehow I got missed when they took the census. So they are incorrect about all autistics.

Is this a viable philosophy that will help autistics and their families? Is there a consensus for this philosophy among most autistic persons? Are the people who espouse this philosophy typical of autistic people in general? I would like to address these questions in this journal entry.

...

I hope that if any person touched by autism happens to read this and someone from the neurodiverse crowd gives them a homily trying to convince them of their way of thinking that they will, in the words of Nancy Reagan, just say no.

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