I broke my chair whilst bouncing in my seat whilst listening to the show. I really need to get a chair suitable for bouncing. The Ethical Dilemma 2000(tm) was also ready to go off, but I think your points must have hit home with some Canadians. The host was even suprised by the notion that Autistics all over the world did celebrate the decision, a fact which the ABA parents may focus on playing down by drawing attention to their own children and how they did not.

A notion defeated by two points: If their children are able enough to express their dismay at the decision, then they are not disabled enough to speak on behalf of those who are disabled(a point introduced by the parents themselves but applied selectively, so lets see how they like it when this unfair circular reasoning is used against them). The second point being that the parents can not possibly know what their children think of the decision if they have any specific opinions on the matter at all, the parents are simply asserting their own opinion as the voice of their children.

This is Lucas: the Kung Fu chop of Autism.

Edited by author 06-20-2005 01:47 PM
Hi Michelle,

I have not been able to hear you on the CBC radio "Cross Country Checkup" show broadcast on Sunday, because of technical problems with listening from the internet in my local public library. I am *very* disappointed. Perhaps some time in the future I will be able to listen to your contribution.

Re /m1926 and the potential all autistics have for savant abilities. How is that potential to be unlocked? I thought that savant abilities were unusual, like being an Olympic medallist.

When I was a boy, I don't remember at what age, but sometime between 5 to 10 years old, I could do arithmetical calculations - such as 374X621 - effortlessly in my head, which I was always asking my parents and telling them the answers. Then I lost that ability, and my arithmetical skills are now just above average.

Acording to an article in Rolling Stone Magazine as reported on -http://www.prweb.com/releases/2005/6/prwebxml252189.php - mercury has beem confirmed as the cause of autism.

I'd best start chelating myself and $h!tting solid blocks of metal out then. I may even cure any potential children I have.

*Very* busy and have to go to the Senate Committee thing (rescheduled and not re-cancelled, at least yet) tomorrow morning, or rather, this morning, later.

Thanks Mike re the info about your Mom hearing me on the radio.

For responses, and links to responses, to the Rolling Stone and Salon mercury hysteria articles, consult the Diva http://autismdiva.blogspot.com/ (many posts now, going back a ways), and follow some of the links (e.g., to Orac's blog). Some of my writing is hovering around this also, somewhere...

Philip, when I can, I'll try to be clearer re the potential for or susceptibility to savant abilities. But I may not be coherent enough to write tomorrow or rather later today (and am completely distracted right now).

Edited by author 06-21-2005 04:34 AM
Hi Michelle,

I wish you all the best at the meeting of the Social Affairs, Science and Technology Committee of the Senate this morning. I hope it is not unduly stressful for you. I saw your name as a witness on the relevant page of the Parliament of Canada website.

Edited by author 06-21-2005 11:47 AM
In October 1994 I took Morrisby Profile aptitude and personality tests as part of a career guidance program. The results were grouped as follows:

Low - Lowest 10% of the adult population
Fair - Next 20% of the adult population
Average - Middle 40% of the adult population
High - Next 20% of the adult population
Very High - Top 10% of the adult population.

My scores were as follows:
Aptitude Test Type: Score

Reasoning - solving difficult abstract problems: Fair
Verbal ability - being good with words: Very High
Numerical ability - being good with numbers: High Average
Perceptual ability - being good with diagrams and pictures:
                                           Medium Average
Spatial ability - being good with plans and 3D shapes:
                                           Low
Mechanical ability - knowing how things work and fit together: Low
Manual speed - working quickly with your hands: High
Manual skill - working carefully with your hands:
                                        Medium Average

Personality Test Type:

Awareness - noticing people and things around you: High
Flexibility - enjoying change and variety: Fair
Inner conviction - sure of own capabilities and liking to do well: High
Confidence and decisiveness - having ideas, taking the initiative: On High side of border with Average.

     
Here are the reports on mental health, mental illness and addiction of the Standing Senate Committee on Social Affairs, Science and Technology of the Canadian Parliament, which were tabled on November 23, 2004 - http://senate-senat.dialoguecircles.com/De...DN=240,32.Documents. You need to click on 'About this Study'. and then click on 'Downloads' for the Reports. Autism is referred to on pages 85 to 86 of Report 1.

Edited by author 06-22-2005 05:16 AM
Hi Michelle,

I have some questions about your appearance before the Social Affairs, Science and Technology Committee of the Senate yesterday. I have been thinking about you.

What was the procedure? Did you make a statement, and then the Senators questioned you? Or did they ask you questions and you said what you wanted in your replies? Were you able to question the Senators? Did you speak only about your personal experience of being an autistic Canadian, or also about the climate of hostility, ignorance, prejudice and exclusion towards autistic Canadians? About how long did your appearance last? Were you able to hear the testimonies of the other witnesses? How satisfied are you with your appearance before the Committee?

Here is a link to the venue for the Committee hearing - http://www.fairmont.com/queenelizabeth. John Lennon and Yoko Ono stayed there in 1969 when they staged their 'bed-in' and Lennon wrote the song "Give Peace a Chance". Was the meeting room like that shown in the middle picture at the top of the Meetings and Events page of the hotel website?

I am suprised that the Committee did not meet in an 'official' building, such as the Hotel de Ville.

I noticed from the list of Committee members that the majority are female.

Hi Philip,

A few words about the Senate thing. First, it was a terrible experience, and I still feel horrible. I'll try to be as objective as I can.

The hotel itself was difficult to manoeuvre around. The convention floor is huge and I wandered around a lot (getting a lot of funny looks from tons of men in suits--the place seemed full of men in suits) before I finally found the right room.

The first session (there were two morning sessions) ran late. I watched the last 45 minutes or so. During this time, someone asked me if I was Michelle Dawson, and I was then able to give her the copies of my brief (for distribution to the Committee). I also asked her if I could possibly be given 10 minutes (the time you are said to have is 5-7 minutes) to read my brief, so as to read the whole thing, as this would result in a lot less confusion and less questions being necessary.

The format is supposed to be that everyone invited for a given session gives their "presentation", which, I have repeatedly been told, has to be based on your submitted brief; then there is a discussion with the Senators on the Committee, who ask questions of those who have presented.

I was assured by the person who took my name (I had to fill out a form) and the copies of my brief that I could for sure have 10 minutes (I thought, in fact, that I would need a bit less than that; I just didn't want to be cut off).

Meanwhile, the earlier session, which I then continued to watch, did not conform at all to the format I describe above. I was totally confused. And the room would rank in the top 3 of the rooms I've been in for autism unfriendliness. It was visually and auditorially (not sure if that's a word) bewildering and painful. There was stuff all over the place, and people all over the place. You could hear muttering noises from the translation. There were people milling around; I had no idea who they were and what they were doing. There were only five Senators, so far as I could tell, and I think only four for my session (I actually made a remark about this, because I thought it was bizarre if not rude that the presenters were not told who was there--the set up was so massively confusing that I, for one, could only guess).

For the sessions, everyone sat around this square of tables. Again, most of the people sitting or standing or milling around were not actual Senators. There were translators (they were easiest to figure out) spelling each other, but there were lots of other unidentified people. There were these signs on the table, but I couldn't see all of them, or read all of them.

The early session, which included Remi Quirion of the CIHR (the guy who agreed to bar autistics from the CARW back when, and stood by this decision), went on and on. Then they announced a short break, but the break went on and on as people chatted and socialized. I felt definitely like I was a different species and did not belong in the room at all.

When the session I was in finally started, the person in charge, who was Senator Keon (Senator Kirby was not there, but no one said anything about this, except me--I was totally bewildered), said that we would have to stop at noon sharp. This gave us a total of about 40 minutes, or about half of what we were supposed to have. There were three presenters in this session. The other two were women who ran service organizations. I was asked to speak first. I asked if I could read my entire brief to avoid confusion and to make questions less necessary, in view of the time problems. Keon did not really answer, so I just started.

I almost stopped several times to say "this is ridiculous". There was real and obvious hostility from Keon, and otherwise there seemed total indifference and non-attention. This reminded me entirely of the meetings I had in my workplace about legal issues and so on--I would present something I had worked hard on, something very precise in addressing whatever the important issues were, and all these people in suits, etc, would just ignore me totally, except for glaring at me. It was as if I had said nothing at all and was a mere annoyance.

This is how it was at the hearings for me. And Keon was incredibly rude. In my brief, I have a sort of opening explanatory piece, then I have two short series of recommendations (they are really just examples of possible recommendations). When I *finished* the opening piece, Keon spoke over my last few words and told me they didn't have much time and could I make my point. I was amazed. I just *had* made my point. I told him in fact I was finished, and if he wanted, I could make some recommendations. He said okay, but cut me off less than a minute later when I was in the middle of one of the recommendations, and told me they just didn't have time.

I think I had not taken much time at all. The next person to present went on and on, and was never interrupted, and took massive amounts of time. This person started by saying that (unlike me) she would speak from her heart, rather than from a text (remember, I had been told that you had to make your presentation from your brief), implying unmistakably that I had no heart, either myself, or in my presentation. This person's presentation was interesting, except it was full of cliches and drama and very exaggerated body language (being next to her, it was hard to stay out of the way), and ended with a cascade of self-pity.

The next person to present did not have much time at all, because of this.

During the two other presentations, I wrote endlessly on scraps of paper (that is really a last resort for me). I wanted to leave. I thought I didn't belong in that room where all the other people were the same and knew how to do things, and were polite to each other.

There were only a few minutes for discussion. Keon said abruptly that he would read my recommendations, and that anyway we had spoken extensively on the phone. This is NOT true. We had one bizarre conversation. The purpose of this on my part was to ask this Committee to drop autism from these hearings, and to understand that what they had done so far was harmful to autistics. I had phoned because when I sent email (I had sent one to the entire Committee), I was ignored. Keon, when I spoke (briefly) with him, showed a total non-ability to accept that autistics have an existence independent from that of parents of autistic children. He just thought that parents were the sum total of "autism"; that there was no one else to speak with. He presented with an absolute failure to consider that autistic people actually exist. There was nothing I could do about this. The conversation was surreal, just like the hearings.

Some of the other Senators did ask me brief questions, with Keon frowning all the time and cutting me off. I was able to make the point that there is no reliable Canadian resource for basic information about autism (I was asked about official associations). Unlike, say, cerebral palsy, you can't refer someone looking for accurate autism information to the existing "official" autism groups. One of my recommendations (which I was not allowed to read) is to create an official resource of accurate and unbiased autism information, similar to what Health Canada has done re vaccinations (e.g.). The last question was one Senator who indicated her understanding that autism did not belong in these hearings, autism not being a mental illness. I agreed entirely and said in fact that was why I had been in contact with Keon. However, I had to add that autism *is* in these hearings, in the form of a lot of testimony as well as the statements (David Vardy's take on how horrible autism is, etc) in the well-distributed interim report--and that this was what I was addressing. This Senator mentioned that perhaps autism needed a separate inquiry and I think I said "wow" and pointed out that they would really have to plan, were they to attempt this (it is beyond my imagination what this kind of inquiry would be like; it would be a non-stop autism horror show, no doubt with great encouragement from the senators throughout).

And that was it. I felt horrible after and still do. It gave me flashbacks to other situations where it was made very obvious that I was quite different from everyone else in the room and did not belong there, and was not wanted there. I will *always* remember how rude Keon was, which cannot be properly described (not by me, anyway; you had to be there). The whole thing is something I would like to forget, but am unlikely to be able to.

That sucks Michelle!

You wrote: "It gave me flashbacks to other situations where it was made very obvious that I was quite different from everyone else in the room and did not belong there, and was not wanted there."

No doubt that that was the point Keon and others were trying to make-leave Autism to the experts Michelle (which in Canada it seems the main criteria to be an autism expert is to be especially judgemental and to not be autistic!)

Me I was too intimidated with the whole process (Eg. getting lots of funny looks from tonnes of men in suits) So my hat is figuratively off to you Michelle for wading into the bureaucratic quagmire of self aggrandizing egotistical neurotypicals the likes of which would make most Canadians feel diminished.

I wish I was surprised that you were treated that way but really- really, I would've been surprised if you were treated with respect.

Edited by author 06-22-2005 01:59 PM
Hi Michelle,

Thank you very much for your detailed account of your ordeal before the Senate Committee. It was far worse than I imagined it would be. I wish that you did not have to endure such a terrible experience. Reading it gives me a deep sense of sadness and anger for what you went through, but also respect and admiration for you.

The incompetence of bad time-keeping only made things work. I guess they had to stop at noon sharp for their lunch break. The overrunning of the break with people chatting and socialising is typical non-autistic behaviour. Just had a thought, ABA principles of reward and punishment should have been used to get the sessions to start and finish on time. If the Senators etc keep on time then they get an extra little treat with their lunch, if not they get one less course for every ten minutes they overrun.

I am surprised that there were only five senators (four for your session), I thought there would be at least nine or ten there.

It is appalling and inexusable that Senator Keon was so rude to you, and that the other Senators treated you with total indifference and non-attention. I just cannot understand their behaviour. Another thought. Was it just those Senators, or would others have treated you in the same way? Would you have been treated with respect and courtesy by elected MPs, such as your current and previous MPs? But being elected rather than appointed, does not necessarily guarantee decent behaviour.

Your idea for an official Canadian resource for accurate and impartial basic information about autism is great and much needed. Though no doubt, ASC would claim that they provide that information.

If you want to, is there any procedure for lodging a complaint about the incompetence of the proceedings, and the rudeness of the Senators, especially Senator Keon?

Another thought. The venue was bewildering and painful to you. Would the organisers have been sensitive to the needs of blind or deaf witnesses, and provided appropriate adaptations?

Thank you again for taking the trouble to post such a vivid word picture of your experience. I can imagine what it was like for you. I hope you forget it. I send you a virtual hug, and kind and restorative thoughts. You deserve a - what Michelle really loves doing - treat.

Thanks Mike and Philip, for commiserating.

Mostly, the problem seemed to be how rude Senator Keon was, and how badly he ran the sessions. He was not rude to anyone else, or even abrupt. The other Senators seemed to take their cue from Keon. The information they have heard (and approved of) re autism so far would lead them to assume that I am a total menace, to themselves and the proper running of their hearings. Keon's (false) statement that he had spoken a lot to me on the phone is a confirmation that prejudice interferes with even simple judgments.

Philip, your behavioural solution to the Senators' inability to hold to a schedule made me smile. I believe all the chatting and socializing is seen as in the interests of saving the afflicted. The chatting simply confirms that everyone agrees about everything, and confirms that they are all heroes battling back the tide of what Dr Quirion calls the "disease burden".

By the end of the session I was in, the other Senators (besides Keon) seemed to relent a bit, or maybe they noticed that this didn't look too good. The second presenter had been permitted to go on and on, and no one snapped at her to (a)make her point, and (b)stop in mid-paragraph, because there's no time. No one stopped her when she veered far from her stated subject into her personal story and a rant about her sister (?) or daughter (?), who has ruined her life (etc) by being mentally ill--and about how no one listens to parents/family members of the afflicted, etc.

After the session, one of the Senators (Senator Gill) approached me. He is aboriginal and seemed, after asking if there was any organization for autistics, to catch on that all decisions being made about us were made by non-autistics. This did seem to ring a bell for him (he is old enough to remember when a similar situation existed for aboriginals). I wish he had said something about this on the record. But he really only paid attention starting right at the end, when he had asked me (on the record) re official organizations where he might inform himself, and I said there were none.

None of the other Senators or presenters or millers around (who did approach and speak with other presenters) approached me after (none got even close). Everyone else was still chatting, etc, as I left, as they had after the first session. And I thought that they had to clear the room for lunch at twelve sharp (as Keon had stated).

I don't think I could have done *anything* to have altered the situation, in the actual session. My "message" was wrong. I didn't make imploring gestures. I didn't implore at all (or make any gestures). I didn't properly respect the "disease burden" paradigm. I presented some science, just as though I were speaking with grown-ups for whom science might be important. I had earlier warned the organizers that putting me in this session (versus the earlier session) was an error, but, because I have a diagnosis, they refused to acknowledge that I"m a researcher.

I suppose I could have told some of my horror stories, but I still think I would have encountered the same flat-out rudeness/indifference (I don't have the *right* kind of horror stories). I suspect they can't conceive of a neurological (they would think, "mental") difference as anything but a disease. I practically expected one of the Senators to ask me if I was taking my meds.

Hi Michelle,

I have been comparing your terrible experience at the Senate Committee meeting on Tuesday with that at the Auton hearing at the Supreme Court on June 9, 2004.

As you wrote in "An Autistic Victory" - http://www.sentex.net/~nexus23/naa_vic.html - "in Auton, a case involving decisions about the future of autistics in Canada, the "autism community" was forced to watch while an autistic was treated as fully human and as an equal."

"The voice of an untreated autistic was not only welcomed, but heard, and considered, and noted."

Your account of your ordeal at the Senate Committee hearing is etched in my memory. It has deepened and strengthened my friendship for you.

Now for a complete change of subject. I had fun with my shadow when walking home last night. When I did discreet hand and finger movements, my shadow copied me. It was at an angle like this / to me, and in front of me. When I was walking next to flat surfaces, such grass or a road, my shadow was flat; when I walked by a tree or wall it became upright on the tree or wall. Because it was late evening and the sun was fairly low in the sky, when it was obscured by a building, my shadow temporarily disappeared. Sometimes my shadow was clear, other times more faint.

Edited by author 06-23-2005 05:56 AM
On the National Autistic Society website there are interviews with Zac Beattie, the producer of "Make Me Normal" - http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=591&a=7099, and with Jade Ragan, the headteacher of the Spa School which was featured in the documentary - http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=591&a=7101.

Here is an interview by Joe Scarborough with Robert F.Kennedy Jnr - http://www.msnbc.msn.com/id/8243264. Kennedy says that almost immediately after Thimerosal, which contains mercury, was put in vaccines back in the 1930s, autism cases began to appear. But autism existed before Leo Kanner described and named it in his 1943 paper. Autistics were diagnosed as schizophrenic, or mentally retarded, or morons, idiots or imbeciles, or psychotic, or regarded as weird or eccentric.

Scarborough says that his son has "a slight form of autism called Asperger's." But there is nothing slight about AS.

Speaking of that, The NAS has not yet responded to my letter pointing out that their blanket support for the programme contradicted their view that Autism does not cause aggression.

I will be e-mailing again.

Edited by author 06-23-2005 08:52 AM
This is a list of notable people on the Spectrum: http://www.answers.com/topic/list-of-perso...-spectrum-disorders

One of our local heroes is notably on it.

Here's another list that includes fictional characters. Who knew Bert from Sesame Street was Autistic?
http://www.geocities.com/WestHollywood/Sto.../4502/famousac.html