Saturday, November 03, 2007

No One Is Trying To Cure Them

The Globe and Mail published an article today, ‘Autistics': We don't want a cure , for which I was interviewed as a voice speaking out against the Neurodiversity movement; a movement which opposes efforts to treat or cure autistic children. Unfortunately, although the article is balanced the title implies that people are trying to force high functioning autistic persons to be cured of their autism, a false implication. Parents seek to educate, treat, and cure their own autistic children, particularly low functioning autistic persons, whose very existence is glossed over and ignored by the Neurodiversity movement.

Ms EsteeKlar-Wolfond is a frequent spokesperson on behalf of the ND movement and offered her on line comment in response to the perspective I offered as a balance to the ND perspective:

I would disagree that the "neurodiversity movement are "ashamed of" low-functioning autistics. It's quite the contrary. This is an issue that effects the entire disability communities -- the right to be heard regarding their perspectives, as well as to increase choice and services that assist all autistic individuals in Canadian society to reach their fullest potential. EsteeKlar-Wolfond Founder/Executive Director The Autism Acceptance Project

As the father of an 11 1/2 year old boy with Autism Disorder who has advocated for services for autistic children, youths and adults I find Ms. Klar-Wolfond's comments incredulous. Anyone with a Google blog search bar can simply insert the words 'Autism Every Day' to see the hateful comments made by ND advocates about parents who described some of the harsh realities faced by low functioning autistic children. Even the expression 'low functioning' is objected to by the ND crowd.

The realities of low functioning, intellectually challenged autistic persons are not featured in the rhetoric of the ND movement. Indeed Amanda Baggs, who actually attended high school and college, discussed her various education and medical issues with various education and medical professionals, and writes sophisticated complex blog commentaries is portrayed by the ND movement as your typical low functioning autistic person. Ms. Klar-Wolfond has herself made reference to Ms. Baggs in her commentary. The emphasis is always the same - portray autism as a different, even superior, form of intelligence. There is no place for truly low functioning autistic persons with limited communication ability or understanding of the world in the ND rhetoric. There is no place in Neurodiversity's false autism reality for discussion of such ugly facts as head banging caused brain injury, self inflicted bite wounds or aggression against family members and professional attendants.

Although Ms. Klar-Wolfond claims that autistic persons should have the right to be heard she rejects, with disdain, the voices of those parents who speak for their autistic children, children who can not speak for themselves. Ms. Klar-Wolfond opposes the efforts of those parents who seek to obtain ABA services for their children. She is not alone in the Neurodiversity movement in opposing services sought by parents for their autistic children.

Dr. Laurent Mottron was also interviewed for the Globe and Mail article. Dr. Mottron is a Montreal area "autism expert" who has studied high functioning autistic persons for decades and has conducted a study purporting to show the innate intelligence of all autistic persons. The good Dr. Mottron has appeared before the Canadian Senate in an effort to persuade the Canadian government NOT to fund ABA services for autistic children. He also provided an affidavit in support of Michelle Dawson's intervention before the Supreme Court of Canada as part of her ongoing crusade in opposition to ABA services for autistic children.

Neurodiversity advocates have every right in the world to oppose any form of treatment for themselves if they are themselves autistic. But they have no right to claim they are speaking for other peoples' autistic children, particularly low functioning autistic children who can not speak for themselves. That is their parents' right and duty, or that of other persons who actually care for and raise these children. These are the very voices that Ms. Estee-KlarWolfond and the Neurodiversity movement do not want to hear.

4 comments:

Many supporters of Neurodiversity dislike the high- vs. low-functioning distinction because they see how some people and institutions use this distinction in order to deny rights to low-functioning autistics and services to high-functioning ones.Ms. Baggs is a good example that these ND supporters have some right. She is very intelligent, but her external appearance doesn't contradict what is most people's idea of a low-functioning person. She is an excellent writer, but cannot communicate effectively by speech (at least not so effectively to show clearly that she is high-functioning). So she was institutionalized and they DID try to cure her. Indeed, she was misdiagnosed with schizophrenia, which can excuse doctors for forcing her to take medications that didn't and couldn't help her and for misleading her parents that the treatment would help her (schizophrenia, unlike autism, usually responds to treatment). However, no misdiagnosis can excuse professionals for abusing her the way she claims they did. They told her parents she was violent, but "forgot" to mention that this was a reaction to systemic physical abuse. Ms. Baggs says that without support from her family, she would still be in an institution labeled as unable to take responsibility of herself.I do not agree with Amanda Baggs in everything (in fact, I have with her disagreements more serious than the ones I have with you), but I think here she knows what she is talking about.After a BBC documentary showed institutionalized Bulgarian children neglected and starving (you can see it at http://video.google.com/videoplay?docid=-9176914173325307126), the institution employees and the social minister blamed the children's outrageous condition on their "diseases". In other words, after you keep a child so neglected that he inevitably becomes low-functioning, you use his low level of functioning to justify further neglect and abuse.

One of the most frustrating aspects of Neurodiversity ideology for me as a parent of a low functioning autistic boy with limited communication skills is the attempt to obscure the very real differences between low and high functioning persons. In complete candor I find it offensive when people with the gift of language and comprehension try to deny the realities of those, like my son, who are much less fortunate.

You accept Ms. Baggs as an example of a person with low functioning autism. A physician somewhere may well have classified her as such but she is certainly not representative of low functioning autism.

(1) Verbal abilities, as in ability to speak - In her own writings she has commented about having discussed her condition, then diagnosed as schizophrenia, with medical professionals. She has also published anecdotes about discussions she had with educators at college to which she was admitted. Further she describes incidents with friends from her youth in which she used verbal, as in oral or spoken, communication.

(2) Understanding - Ms. Baggs' current writings demonstrate a great deal of intellectual ability and understanding of sophisticated, abstract concepts. As pointed out she also attended school and started college.

It is not open to me to dispute Ms. Baggs' autism diagnosis as some have done on the internet. But I do NOT accept that she is in any way representative of low functioning autistic persons or their experiences. I have a low functioning son, whom I love dearly, and I know the difference.

Tiffany Pinckney who was starved to death in Toronto was low functioning. The middle aged autistic lady who was physically assaulted repeatedly in a Long Island residential care until the assaults were caught on video tape, but who could not communicate the assaults to others or even describe her pain, she was low functioning.

The many children, including my son , who lack sophisticated speech and understanding of the world, who do not understand the dangers of daily life, they are low functioning.

Ms. Baggs, as taken from her own writings, does not share the realities of these low functioning persons and has nothing to add in describing their lives and their realities.

I feel I cannot explain well my point to you, so I'll give you a link where it is explained better:http://www.members.optusnet.com.au/~anne.mcdonald/Anne_files/AnneHome.htmlFor other pages by the same author, google "Anne McDonald".Because she is not autistic and doesn't write specifically about autism, I hope you won't find her writings offensive.

I checked the link you provided although I did not go further than that first link. I saw nothing that addressed my point.

Your comments are always rational and civil. But what I find offensive are the persistent efforts by some in the "neurodiversity movement" to obscure the fact that some autistic persons are intellectually challenged and lack the abilities to function in the real world without the help of others.

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The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
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We need to even out the funding.

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Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

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Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.

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It's NOT About ME

I am the father of two sons one of whom is severely autistic with intellectual disability. I have advocated for autism services for autistic children, students and adults in New Brunswick, Canada and I blog and comment about autism on the world wide web. And I like to walk .. a lot.