Edited by author 07-26-2005 08:09 AM
Here's the autism gene du jour (uh, actually it was *yesterday's* gene du jour) http://www.timesonline.co.uk/article/0,,11069-1707998,00.html

This time, no promise of a potential pre-emptive strike against autism via genetic test, but a cute metaphor from the scientists (gee, our mutant genes can't communicate, just like us) and ominous promises of brand new drugs.

Mike, I forgot my UOP story. Remember UOP? The only time I ever met with Montreal autism society officials, what they really wanted was my urine (finally, a way for autistic adults to be useful!). That was about five years ago. Back then I had no foundation for judging what was or wasn't a crackpot autism theory, but for some reason, I decided not to go there (so to speak). I refused, and I wonder if this went down on my record somewhere as non-compliant behaviour.

Re the DSMV, thanks for the link, Philip. I assume they're looking for clinicians and researchers (those who have to diagnose), but it would be interesting if they listened to the diagnosed also. And yeah, I would have a suggestion or two.

CBC radio will rerun "The Radio Club" this morning on Outfront:
Tuesday, July 26, 2005, 11:45 a.m.(12:15 in Nfld)
26/07/05

Five sharp raps and one loud bam. That's the secret knock that will get you into the classroom of eight young boys who have autistic spectrum disorder. They have formed "The Radio Club" to tell you what it's like to view the world through the lens of autism.

Or hear it online... http://www.cbc.ca/outfront/listen/2004/04-11-23.html

Edited by author 07-26-2005 04:51 PM
Hey Michelle- Re: m/2259
That UOP experience sounds like a real pisser! hahaha

Re; Autism and Religiosity
here is an interesting link- http://www.geocities.com/buddhaautist/

Ok on further inspection the above site is a little out there but still interesting...

Edited by author 07-26-2005 09:26 PM
Nothing like standing by and watching non-autistics who wish autistics didn't exist argue over what caused the "hell" of our existence http://cbs5.com/health/local_story_207192624.html

This is just like (and as lovely as) the ABA parents vs governments "disputes", where the premise of both sides is that autism is horrible, and where all agree that getting rid of autism via prevention or treatment is ideal.

Edited by author 07-27-2005 03:11 AM
The Globe and Mail, which has relentlessly been irresponsible in its coverage of autism issues, managed to publish a reasonable editorial on Monday re vaccines (you have to pay to see it, hence no URL):

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Don't fear the vaccines
Monday, July 25, 2005 Updated at 12:05 AM EDT

Until a vaccine is developed for irrational fear, knowledge will have to do. And the best knowledge says that childhood vaccines do not cause autism, hyperactivity and other such disorders.

Such, however, is the power of unfounded worry that leaders of three top U.S. health agencies felt it necessary to hold a news conference last Tuesday to reiterate that childhood vaccines are safe. The agencies (the Centers for Disease Control and Prevention, the National Institute of Child Health Development and the Food and Drug Administration) wished to pre-empt those parents who were set to tell Congress on Wednesday about the supposed dangers of vaccines. The agencies were hoping that science and reason would trump emotion.

Before a polio vaccine was introduced in Canada, there were 20,000 polio cases annually. Before there was a diphtheria vaccine, there were 9,000 annual diphtheria cases. Before there was a rubella (German measles) vaccine, there were 69,000 rubella cases each year. In 2002, there were 16 rubella cases, and no cases of the other two. Canadians (and people in other advanced Western societies) have forgotten just how bad these diseases were. In the United States, rubella killed 2,100 infants as recently as 1964.

Understandably, parents worry about rising rates of autism and behavioural disorders. Autism rates rose sharply in the 1990s in the U.S., at the same time that thimerosal, a mercury-based preservative, was being used in childhood vaccines in that country. But no credible evidence has emerged to link thimerosal and autism, notwithstanding the conspiracy-laced theories of Robert F. Kennedy Jr. and some others south of the border. It may be that the apparent increase in the autism rate (to one in 200 children from one in 1,000 three decades ago) owes much to an expanded definition of autism. No one knows.

In Canada, thimerosal has not been present in most routine childhood vaccinations since 1994 (the flu vaccine is an exception). Thimerosal has never been used in the measles-mumps-rubella (MMR) vaccine. When 5,000 children who received this shot had their medical records reviewed, there was no link to developmental problems, a Columbia University study published last year in The Lancet found.

Canadians are aghast when, in far-away countries such as Nigeria, diseases on the verge of extinction such as polio rise again after community leaders declare vaccines to be part of a deadly U.S. plot. Canadians need to make sure that knowledge continues to trump irrational fear at home.

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However, the Globe and Mail has never allowed knowledge (science, reason, ethics, etc) to trump its own published (in editorials, and in reporting) irrational fears of autism. Nor have they allowed knowlege, science, reason, or basic journalistic ethics to prevent them from widely disseminating irrational fears of autism and autistic people. In the absence of exactly the irrational fears of autism the Globe and Mail promotes, how would the anti-vaccine gang sell their position?

An objective observer might take note that the righteous and unassailable (no other views are allowed) prejudices against autistics held by Canada's most influential newspaper and editorial board innoculates them against recognizing irony when they are up to their eyes in it.

The above editorial generated an excellent letter, published on Tuesday, which you can probably see here http://www.theglobeandmail.com/servlet/Art...TERS26-10/TPHealth/ . If not, here it is:

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Vaccinate your kids
By KARIN BJORNSON

Tuesday, July 26, 2005 Page A12
 
Montreal -- Re Don't Fear the Vaccines (editorial -- July 25): I wish the Canadian Pediatric Society would add its voice to that of the American health agencies and shout at the top of its lungs that parents must vaccinate their children.

I recently became acquainted with a woman whose child, like mine, is less than one year old. She informed me that she had not and would not be vaccinating her boy because according to her "research," it was harmful and could cause autism. This exemplifies the power of self-appointed experts whose disdain for medical science puts children at risk.

As I am a big believer in vaccines, I asked my pediatrician if any harm could come to my son if he were to play with a non-vaccinated child.

She explained that I should limit any socializing with such a child to the outdoors. My baby has not had all his vaccines and booster shots and is therefore not fully protected from potentially harmful and/or fatal diseases.

As this woman's child is not protected at all, he is more likely to become ill and expose others. This child will eventually enter the daycare system.

Let's hope most Canadians will continue to ignore any campaign of misinformation about the safety of vaccines.

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Interestingly, the Canadian Pediatric Society has taken a position re early intervention in autism, concluding that "There is no evidence to support adopting a single autism treatment program as the gold standard." http://www.cps.ca/english/statements/PP/pp04-02.htm

Sketchy Canadian news stories about a 23yr old autistic woman who died. "Died" in this case, from the media stories, means "criminally neglected until she was dead".

The first story is a press release, apparently from the police http://press.arrivenet.com/bus/article.php/673977.html The second story is from a local newspaper http://www.mississauganews.com/mi/topstori...5079p-3400844c.html The third story is from an Edmonton tabloid, and the autistic woman is given a name http://www.edmontonsun.com/News/Canada/200...27/1149256-sun.html

It is mostly pointless to be relieved that those who apparently neglected Tiffany Pinckney and therefore killed her are now in custody. I don't have the courage to think about what Ms Pinckney must have suffered and I've been looking dumbly at these stories for a while now without any thought except naive noises like why, why, why no one noticed and intervened (according to the media, seven *years*?) and how the hell could this happen.

I hope Tiffany Pinckney was at some point in her life known and cared about by human beings who valued her. I hope there are people who know about her life and will make sure her life is respected and remembered now that it has been taken away from her. But if there are such people, where were they?

Sketchy is the word Michelle.

The implication is that she must have suffered for a long time at the hands of these two that have been charged who likely only took her in to get at her disability allowance. In my experience there aren't nearly enough checks and balances and as long as the couple wasn't making waves the assumption was likely that everything was just hunky dory

It's her sister and brother in law. They had her for 7 years. She was 24. So they had her since she was 17? Maybe the parents died?

It's too horrible. "Charges in Autistic Death", was the name of the Sun story.

Camille

Edited by author 07-27-2005 04:40 PM
It is appalling that Tiffany Pinckney suffered such neglect by her sister and brother in law. Their being charged with not providing Tiffany with the necessities of life means that they starved her to death. Like you Michelle I hope that her real value is recognised, that she will be remembered with respect, and that at some time in her life she was loved and cared for.

I am suprised that this story was not in the Globe and Mail and the Toronto Star.

Edited by author 07-27-2005 05:19 PM
Hi Michelle,

I am so happy to be at Autscape and I am having a great autistic time here.

Jim Sinclair gave a brilliant talk on being autistic in NT space, in one's own space, and in autistic space.

I had hours of fun on the computer this afternoon with the Reactive Colours program.

Dinah brought along her copy of the DVD of the video of you speaking on "Autism in Society, Law and Science", which I saw when it was screened twice this evening. I hope that history will give the true verdict on autistic people and the prevalent attitude towards them in Canada.

I wiil post about Autscape in more detail at a later date.

Another tabloid story about Tiffany Pinckney http://torontosun.com/News/TorontoAndGTA/2...27/1149323-sun.html . I don't know why the mainstream media have not covered this story. Maybe it's because she died months ago (in April); the news in this case is the investigation of her death resulting in the arrest of her "caregivers".

Philip-- I've very glad things are going well at Autscape. Having a "great autistic time" sounds... wonderful.

I'm looking forward to more news from Autscape.

Toronto Star story about Tiffany Pinckney, which adds slightly to the information provided by the other media articles http://www.thestar.com/NASApp/cs/ContentSe...hAX&tacodalogin=yes

There is a publication ban (no idea why), which might explain why there is so little information.

""This isn't a mercy killing," Det.-Sgt. Gerry Harnden of Peel Region police said yesterday."

Well, no. Though I suppose it's always assumed to be a possibility when the person killed is autistic. I wonder what would have happened to Ms Pinckney's "caregivers" if they had, instead of neglecting her to death, drowned her.

And then there was the case of Katie Lynn Baker, a Rett's girl who was starved to death by her mother http://www.ccdonline.ca/publications/latimer-watch/1299.htm . Her mother was not charged in the death of her daughter. The cause of death was malnutrition, as might have been the case with Ms Pinckney.

This is a quote from the article about Katie Lynn Baker:

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Catherine Frazee states, "The nondisabled population...is most guilty of a colossal failure of the imagination. People you know often say to a disabled person, 'I can't imagine how you cope'. The inability to imagine what the disability experience is all about is translated into a kind of collective mythology that a person with disability lives a tragic life, marked by deprivation and suffering. This is simply not so and we have a responsibility to communicate that more and more daringly. We have to find more and more creative ways to express the positive powerful features of the disability experience and then to communicate these in every way possible."

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Unfortunately, the above does NOT apply in Canada to autistics. The disability community, of which Ms Frazee is deservedly a leader, has wilfully failed to imagine the autistic experience. It has rejected in its legal and public positions the possibility that, unless we become sufficiently normal, we are anything but tragic and suffering, if not actually horrific, and doomed.

And autistics in Canada are not allowed freely to communicate about the autistic experience, much less do so "daringly" and creatively, because we are assumed not to understand it. We are either too high functioning or too low functioning or too severe or not severe enough or whatever excuse can be found to discard any views and experiences which cannot be exploited for the usual anti-autistic agendas. Never mind that, according to DAWN Ontario and its allies and Mr Schafer (highly recommended by ASC), if we express ourselves, we are prenicious frauds, imposters, etc.

But I agree with Ms Frazee about the "colossal failure of the imagination" about very different lives, and how this harms actual living people, and sometimes kills them.

Edited by author 07-29-2005 03:36 AM
I don't know if anyone remembers the infamous LEGO™ therapy study http://www.ncbi.nlm.nih.gov/entrez/query.f...15628609&query_hl=4

If I remember, it generated some incredulity. But things are not going to stop there. "LEGO™ therapy" has become "LEGO™ Therapy". It has gone upscale, all the way to the apex of autism research and Dr Baron-Cohen himself http://www.autismresearchcentre.com/research/project.asp?id=204 :

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research project
   
Evaluation of LEGO™ Therapy
 Gina Owens, Ayla Humphrey and Simon Baron-Cohen

Children with autism and AS may be naturally attracted and motivated by systems of one kind or an other. LEGO™ is a highly systematic toy that appears intrinsically rewarding to children on the autistic spectrum. This project is evaluating if LEGO™ Therapy also leads to improvement in social skills.

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I can hardly wait for LEGO™ Therapy to become "scientifically proven" and/or "medically necessary" as an autism treatment...

Edited by author 07-29-2005 10:49 PM
Michelle at al

Trying to chase a reference and it's important that I get this right. There is an article on follow up of autisitic kids - NOT Lovaas et al, which shows that half went to university, one married and one 'needed' institutionalisation, for want of a better phrase. As AB says, no one 'needs' it. Would that be the Szatmari et al paper? Need it in a hurry!!

Edited by author 07-29-2005 11:13 PM
Alyric, see "An Autistic Victory" http://www.sentex.net/~nexus23/naa_vic.html . The study you want, which is Szatmari et al (1989), is described, sourced, and referenced, as it is elsewhere on this site.

This is the cite:

Szatmari, P., Bartolucci, G., Bremner, R., Bond, S., and Rich, S. (1989). A follow-up of high-functioning autistic children. Journal of Autism and Developmental Disorders, 19, 213-225.

Your description of this study *is not* accurate (I've seen what you've written elsewhere).

Digression: if you're going to invoke "classical" autism (which you did in the context of Szatmari et al), when you have time, can you put me out of my misery and define it? I would *really* appreciate that.

It is generally not okay to cite or reference a study that you haven't read. For all you know, I could be totally wrong about this study. You have to verify. This isn't directed at you, I'm just throwing it into the ether.