Sunday, April 12, 2009

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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Sandy said...

Harold -- I just put up a post today about the "reality" of dealing with money, budgeting, etc and how it can adversely affect adults with moderate to severe Aspergers. My son is dealing with the real world and it is not positive or simply a matter of cultural differences.

Other parents with children diagnosed with an ASD may also be interested to know about this issue.

Re the bite on Conor's hand -- my son has permanent scar tissue on the side of his left hand from when he bit it constantly as a child. Even now, when he gets excited, his hand will fly to his mouth.

However, he now realizes what he is doing and stops immediately -- meaning the behaviour modification worked!

Happy Easter!

Lisa Jo Rudy said...

Didn't know about the targeting of Autism's Gadfly - which is just horrible and completely uncalled-for.

Of course, the autism "wars" are really disputes. And those disputes, so far, have not ended in any kind of overt physical violence.

But I would say that the disputes (that is, the metaphorical "wars") are very real indeed. In fact, your post is a good representation of the ferocity of the "autism wars!"


John Best said...

This Phil Gluyas/Timelord also likes to abuse autistic women, specifically one who calls herself Droopy.

It all stems from Frank Klein and an essay he wrote describing how he was autistic and loves his life. Of course, Klein, with his 159 IQ, was not dx'd with Asperger's until he was in his 30's and then convinced some doctor to change his dx to autism to give himself more credibility.

You can expect Gluyas to threaten a lawsuit for using his picture here.

farmwifetwo said...

Me eldest use to have a perma bruise in the middle of his forhead (head banging that after much work is no rare to not at all) and my youngest son's left hand has permanently twisted ring and baby fingers from his constant hand wringing.

The problem is the word "cure". Those autistics and parents (Estee, Fitzgerald (sp??)) that are against cures can't understand that nobody is removing a "bad brain" and replacing it with a "good" one.

I haven't changed any personalities. What I am doing is teaching coping with the autistic behaviours/anxiety/self-help skills. I am teaching communication - verbal, non-verbal, pec and computer. And I'm teaching a child to learn... to teach themselves.

I'm not "curing" anything. Education changes all of us. The ability to educate, grow and learn is what makes us human.

Why should we refuse that right to those with autism??


Unknown said...

Lisa Jo

You missed the point.

Anonymous said...

Lisa Jo often misses the point in my opinion.

Stephanie said...

I don't see what the big deal about finding a cure for autism is. If they ever find a cure the parents can decide if they want to give it to their children or not.

Since many parents of HFA/AS children seem to be in the "Joy of Autism" camp then they don't have to let their children have the magic cure.

And those who are parents of children with severe autism can choose to cure them if they wish.

They cure need not be in utero, thus destroying a potential "autistic" since those in the ND camp link this to abortion. Fine. A person can be cured of a disorder after birth, too, you know.

John Best said...

The "autism wars" are not a dispute.
It's honesty versus propaganda.

~Zurama Arencibia Nuñez~ said...

Harold, I make no apologies when I say, I wish the word Autism had never come into my son's life.

All this acceptance stuff makes me sick. My Mickie bangs his head and when I see the self inflicted marks on his body, all I can think about is finding a cure.

it's easy for a parent with a high functioning kid to say Autism is a blessing. Try that, when your son has severe autism, chronic diahrrea, and constant pain that won't let him sleep and this goes on for years.

A safer vaccine schedule would be a good start. Invitro, will never work, because you can't pre diagnose Autism, in my opinion.

Thank you for all your hard work you do for your son and for others, by telling his story.

There is an Award waiting for you on Autistic by Injection,


Unknown said...


Thank you for your kind words.


Fielding J. Hurst said...

Timelord Phil has too much time on his hands.