Edited by author 03-24-2007 10:23 PM
Hi again Ms Althoff,

Re how to help autistics, I also highly recommend you read a peer-reviewed journal article called "Toward a Behavior of Reciprocity", by Morton Ann Gernsbacher. I'll leave it to you to find it.

Hi Ms Althoff,

You are not going to help an autistic person when you assume she "hasn't the first clue". That assumption has been made about me (including as an adult) and many other autistic people. We are frequently assumed to lack alertness, comprehension, and sentience. These prejudicial (and anti-scientific, and unethical) assumptions do not help us. They harm us.

The below is a comment I left on my blog http://autismcrisis.blogspot.com/2007/03/v...lmontes-hidden.html , which serves as a response to your assumptions.

----------------------------------------------------------- ---------------

I'm old enough to remember being considered to be inferior and suffering because I was female. It was just assumed that if I had any choice in the matter, I would prefer to be male. Who wouldn't?

Similarly, as I've written elsewhere, "My Member of Parliament recently told me that people casually and automatically assume she would prefer to be white, and incorrectly believe this would be an improvement".

Likewise, it was but recently assumed that homosexuals were miserable, dysfunctional, suffering, isolated, etc., as well as diseased. Who wouldn't want such a life of abject misery averted at the earliest possible moment?

Fortunately, we have in many ways mostly gotten over assuming that being male, white, and straight is the optimal outcome that everyone would wish to have.

Unfortunately, there is the persistent notion that disabled lives are inferior, impoverished and consist largely of suffering, and that disabled people are drains on society. Here is Catherine Frazee http://www.ccdonline.ca/publications/latimer-watch/1299.htm , former chief commissioner of the Ontario Human Rights Commission (she has spinal muscular atrophy):

"The nondisabled population...is most guilty of a colossal failure of the imagination.... 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."

This "colossal failure of the imagination" on the part of non-disabled people encompasses the assumption that disabled (including autistic) lives are not worth living, and that anything is better than being like us, and that so long as we are disabled, we must only and always strive to attain or at least imitate that non-disabled optimal life.

---------------------------------------------------------- ----------------

Also see "The staggering cost of the chair- and dark-impaired" here http://ballastexistenz.autistics.org/?p=118 , and "Is this really neutral, everday terminology" here http://ballastexistenz.autistics.org/?p=122

I don't envy you a life of wishing that you were "normal" (whatever you believe that is) and a life of believing that those optimal "normal" people never have difficulties. You've also made me feel fortunate that I don't daily have to deal with people who pity me and assume my life is impoverished.

For a discussion from multiple perspectives re helping autistics, see http://www.kevinleitch.co.uk/forum/viewtopic.php?id=15 Some of the information is out of date, in some areas I now know a lot more than I did then, and all of it requires critical thinking. Also see this http://autismcrisis.blogspot.com/2007/02/e...ent-due-to-aba.html re false assumptions routinely made about autistics, about what we perceive and attend to, and how we learn.

Hello again. :)

My sincere apologies for apparently posting a "hit-and-run" and disappearing. I have many personal difficulties which often keep me from doing things I mean to do... (And speaking of those, I want to say, in reference to what I talk about below, in so far as *I* have any disability/disorder of my own (I have ADD and also struggle with depression and anxiety, which I have done now for many years), I'd be very glad for all of my difficulties to disappear tomorrow (how about yesterday!) and to be quite "normal" with regard to them--I've had just about enough of the whole idea of learning and growing from struggles and challenges--I'd chuck all of my inabilities to cope with the simple tasks of everyday life right out the window in a second given the opportunity.)

I have not managed to return to this page until today, so I have not read the page you recommended, but I will and then reply further.

But I would like to respond to a couple of things now.

First, AM Baggs' response to my series of rhetorical questions ("Because what wheelchair-bound person does not want to walk? What blind person does not want to see? What dyslexic person does not want to be able to read and learn with ease? What person with Asperger's does not want to be able to understand other people and interact with ease?") indicates I'm wrong to believe that disabled people would prefer not to deal with the challenges posed by their disabilities. I'm sorry, but that's something I find very hard to believe.

Are you going to seriously attempt to argue that most blind people would not prefer to see, most people who cannot walk would not prefer to do so, etc.? Because that just flies in the face of common sense and certainly my own experience of life on this planet and I daresay most people's! Am I to believe that the dozens and hundreds of organizations dedicated to finding cures and treatments for diseases and disabling conditions are all some kind of grand conspiracy by the non-disabled to force "normality" on everyone? (And just who is non-disabled anyway? At least by the ends of their lives, the vast, vast majority of people are affected by some sort of disabling problem, condition, disease, etc., and I'm sorry but I just haven't noticed a whole lot of them advocating to maintain their disabilities/diseases and have them not be cured or treated!)

In addition to what I said above about myself, I can speak about people I know... The mother of the girl I work with (Trami) is legally blind due of a degenerative condition, retinitis pigmentosa, and would she hesitate for a minute to have her full sight back? No. As I know I talked about in my first post, my sister is a severely learning disabled, developmentally disabled, legally-blind quadraplegic. Would she hesitate a moment to walk, to see, to read, to learn, to scratch her own ear or head or foot--to do any of the thousands of things she can't do? I can assure you she would not. She laments her limitations daily, sometimes hourly. It's not someone else doing the complaining, and it's not for any lack of being supported, cared for, encouraged, loved, etc., it's because she HATES, and I mean seriously HATES not being able to do what others can do. And who in the world could blame her?

Let's see who else... My mother is increasingly losing her hearing... Would she like to have it back? Yes. My best friend has a congenital problem with her legs/hips/feet that has made it very difficult and painful for her to walk long distances and to exercise. Would she like to see this problem disappear? Yes. And then there's Trami of course... She can't really tell us what she wants, but do I have any doubt that she would prefer not to be autistic? No, I don't. She very clearly wants to have what she sees everyone else having (who doesn't?). She wants to have a boyfriend, drive a car, have friends and go out and do things, have independence, be able to understand things she doesn't understand, learn things she presently is unable to learn, go to college, have a career... Her parents have done everything they can to give her the richest life possible, and certainly compared to what it could be, her life is very full, but it nevertheless remains very limited, both in ways she is aware of and in ways she can't even understand. Would she like us to do whatever we can to help her be able to do more than she can at present? I'd certainly have to say yes!

Well, you've noticed my tendancy to be long-winded... Anyway, I also wanted to ask about what Michelle said:

"She also reminds me of the extent to which community prejudices about autistics, and about how to help autistics, prevail. I hope she knows that her assumptions about autistic people are a series of now-common prejudices."

To which prejudices exactly are you referring? And how do you think autistic people ought to be helped? And most importantly to me personally, how should we help Trami--who is, as far as I can see, so far from you as to be virtually incomparable? How should we help Trami, who can't compose a gramatical sentence to save her life, who hasn't the first clue about most of what is going on around her, who can't have ordinary interactions with strangers because half of what she says is incomprehensible, who can't go out alone because she can't be relied on to look before crossing the street or not to yell and scream in a library or not to pester unwitting strangers with incomprehensible ramblings or worse yet not to get led off to the slaughter by some predator? Should I just let her do all of the "abnormal" things she does without comment or correction? Should I let her go about in some fantasy world in her own head, blithely unaware of the reality around her? Is that in her best interest? I'd like to know, how can I and others who care about her possibly help her without trying to make her be "more normal"? How should we help Trami who--unlike you--could not begin to participate in this very conversation about herself?

OK, well, enough for now. I will read the page you've recommended and get back to you.

Thank you, and I really am interested to know what you have to say about these things, and while my questions may seem to be rhetorical, they're really not.

--Madeline

Edited by author 07-19-2006 04:56 AM
The premise and justification of ABA/IBI in autism is that autistics, unlike non-autistics, are totally unable to learn from the environment, and are only able to learn in ABA programs. There are too many references to list.

This is also the premise and justification of Canada's ABA legal cases, though some of them, like Auton and the Ontario Human Rights Tribunal cases, have the added autism = cancer (or autism = AIDS) dimension. What very different cases like Auton and Wynberg have in common is that massive funding for ABA/IBI for autistic children (but not for other children) is justified on the grounds that autistics can't in any way learn (or communicate, interact, develop, progress, etc) except in ABA/IBI programs.

People who disagree with this have been vilified by Canada's ABA parents. Canada's ABA parents are also now stating loudly that "eclectic" programs like Dave123's are ineffective and wrong and should not be funded.

And an essential aspect of ABA programs, as stated in the published science, is that the Program has to be extended to cover all waking hours of an autistic child. This was one of the differences between the failed ABA program described in Lovaas et al (1973), and the "success" (by the usual standards) of Lovaas (1987).

Canada's Mr ABA himself, Andrew Kavchak, who claims to represent all parents of autistic children in Canada as well as all autistic people, was recently furious that in Quebec, they offer PECS to some autistic kids. His view is that this is appalling. Maybe no one told him that PECS is ABA-based, but Mr Kavchak is considered an expert, so I assume he is fully aware of this and considers PECS to be an unacceptable form of ABA (just like he considers PBS to be an unacceptable form of ABA).

We do have accounts from autistic kids who "succeeded" in ABA programs, e.g., the no-longer-autistic boy who testified in Wynberg. I've written about this elsewhere.

Hi Folks,

I sure don't want to be "letting down" Michelle on this issue but...actually... I did not say that he would not learn without an ABA program. He learns many things without the formal explicit sequential instruction present in an ABA progam. "Life" is a natural "teacher". He learns from "living" life just like many others. He learns from his Montessori program... he learns from his swiming lessons... he learns from trial and error... he learns from checking things out (implicitly?)... However, prior to the ABA approach it is pretty evidient that he had NOT developed an effective functional mode of communication on his own or thru a less strucutured approach (ie "Hanen", Natural Language or just hanging out in the mileau of family). He may have done so eventually without the formal explicit instruction inherent to ABA... or not. Regardless, from my perspective he had things to say and no way of saying them so that others could understand them. This was a problem for him and seemed to be stressing him out. The introduction of the PEC program was the catalyst and he has taken off... destination unknown. Exciting times! The explicit instruction has given him a mode of expressing HIS needs, wants, desires and ideas in a manner that others can understand and, he is less frantic and stressed no as a result. I happen to think this is pretty darn cool and exciting and it CONTINUES to develop very quickly... his initial success with PECs a few months ago has really progressed.

Anyway... Aron continues to amaze us both in and out of ABA. Fantastic little fellow. With a bit of luck you might get to talk with him one day and check in with him about how ABA is from his perspctive.


dave.

It is universal that ABA parents are sure that their autistic child would never have learned anything or communicated or progressed or developed or experienced happiness (or fill in any other positive thing) at all if they were not in an ABA/IBI program. Dave123 is not letting me down in this respect.

Hi all,

Just an update.... my son continues to thrive. He has quickly (smart boy) developed a real proficiency with his PEC system and, as a result, seems less stressed. I think this is related to his ability to express his "wants" in a way that I can understand more easily. We have quickly progressed from single cards to small "sentences"... "I want..." is his favorite card this week. Fantastic!

His self care routine (toileting) also progresses well with many more "voids" in the toilet and LOTS of self intiatied requests to use the toilet via his PECs cards! This also seems to have led him to be less stressed.

He still "stims" like any autisitic... he still plays with his stuff his way... and our ABA program will never target these behaviors.... but ABA has served to provide a more effective communication program and supports the development of other skills (self care, imitation, play)... we have a much less stressed and frantic son who seems happier and more at ease then prior to starting our ABA program. I know this is not "science" or "objective" but it is "our story".

dave.

On Tuesday 18 July 2006 09:50, QT - Michelle Dawson wrote:

> She also reminds me of the extent to which community prejudices
> about autistics, and about how to help autistics, prevail. I
> hope she knows that her assumptions about autistic people are a
> series of now-common prejudices. It is as hard for an autistic
> person (child or adult) to deal with prejudices, ignorance,
> intolerance, etc, as it is for any other kind of person.

It can also be very difficult to explain that the value we see in being autistic is not because of the ideas that non-disabled people use to give *themselves* various stupid warm fuzzy feelings (which are generally very ableist ideas in themselves, just modified to give some of us a little more value), but because of ideas that autistic and other disabled people have come up with that are based on a totally different foundation.

And that being related to a disabled person doesn't mean "understanding all about it".

Edited by author 07-18-2006 09:52 AM
Well, I'm still waiting for Madeline to finish reading http://www.gettingthetruthout.org and get back to us.

I don't have much to add to what Amanda wrote. In case anyone is wondering, I've never met Madeline. I don't know who she is. Her assumptions about me are based on her own personal prejudices, or for all I know, on other people's, and not on any factual knowledge. Little does she know (except I stare at my hands, not my feet). She reminds me of those many people who have publicly said I have no clue about "real" autism because (according to them) I don't self-injure.

She also reminds me of the extent to which community prejudices about autistics, and about how to help autistics, prevail. I hope she knows that her assumptions about autistic people are a series of now-common prejudices. It is as hard for an autistic person (child or adult) to deal with prejudices, ignorance, intolerance, etc, as it is for any other kind of person.

I wonder what Gregor Wolbring would make of Madeline's assumption that no one would want to be like him.

On Friday 14 July 2006 09:57, QT - Madeline wrote:

> I've thought that perhaps the whole idea that disabilities make
> our world a richer, more diverse place, and how sad it would be
> if there were no longer these wonderful "special" people with
> their unique contributions and perspectives is really just a
> happy little delusional idea non-disabled people promote to make
> ourselves feel better... Because what wheelchair-bound person
> does not want to walk? What blind person does not want to see?
> What dyslexic person does not want to be able to read and learn
> with ease? What person with Asperger's does not want to be able
> to understand other people and interact with ease?

That you honestly think all people with any of those things just "obviously" want to do them shows a lack of understanding of the experience of being disabled.

> Are those parents whose children don't speak, don't interact,
> don't use the toilet, don't pay attention to the world around
> them, don't read or write, don't keep themselves clean, can't
> tolerate sounds or lights or touches, who have tantrums in
> public, who hit people, pull out their own hair, hug strangers,
> ask their classmates to marry them, won't eat anything that's
> not white, take off their clothes in public, talk to total
> strangers about their favorite video game, smear feces on walls,
> flush objects down toilets, sit and yell and pound on the floor,
> run out into the street, become hysterical if something changes,
> repeat the same things over and over and over, and/or sit in the
> corner and play with strings... those parents whose kids will
> clearly *not* ever be able to live on their own, have a career,
> have a family, have anything remotely related to a "normal"
> life, who will have to be cared for by either family or others
> for the rest of their lives, who will not be able to go anywhere
> without supervision, are these parents wrong to want to do
> something, anything to help their kids be more "normal", more
> functional, more competent, more able...?

My brother was many of those things (including apparently feces-smearing -- which by the way non-disabled kids often do too) as a child, and is now employed in the computer industry, lives in his own apartment, and identifies as Asperger's. How on earth can you (or anyone else) say this "will never" crap when you're so ignorant of the ways in which autistic development does not show the same patterns as non-autistic development?

> Of course no one
> should try to make you into something you're not, Michelle, and
> people should try to respect your particular needs as much as
> possible, but you obviously have many basic functioning and
> living skills; you can communicate brilliantly; I'm guessing
> you're employed; I'm guessing you don't run naked into the
> street uttering unintelligible nonsense, don't sit in the corner
> all day staring at your feet, don't ask your neighbors to marry
> you.

Maybe you ought not to guess about these things but ought instead to learn about the uneven skills involved in autistic people. I've done all of the above except ask my neighbors to marry me.

> Many autistic and/or developmentally disabled adults
> *do* live in group homes, and some of those are not great places
> to be, and who wants that to be their baby when he or she grows
> up?

Then fight to replace them with something better. Stop blaming people's disabilities for a broken system.

I'm sorry, but your entire post is a testament to lack of some very basic knowledge in several areas (from autism to the experience of most disabled people to the political realities of things like institutionalization and unemployment), which you utter as if it's the unquestionable "obvious" truth and then expect everyone else to somehow be persuaded by.

By the way, please read http://www.gettingthetruthout.org/ from beginning to end and then get back to us.

Hi everyone :)

I very much enjoyed reading Michelle's writings regarding the Auton case. Though I work with an autistic teenage girl, I have very much still to learn about autism. I certainly will think about things differently after having gotten a taste of the world from your perspective. I'm sure there are many more things here I ought to read before asking any questions (to keep from asking questions that have already been answered...), but there is one thing I read that I want to ask you all about...please forgive me if you've addressed this 10 million times already...perhaps you could point me to a URL if you don't have time/desire to reply...

So, Lucas wrote this: "You're making assumptions about us, you don't know when any of us started talking. A consistent scenario though is that Autistic children DO communicate what is the matter and what they want but are ignored because they are doing it 'wrong'." (in a message a while back). So here's where I'm at... To a certain degree, I get what you all (Michelle, Lucas, etc.) are saying about liking being who you are, the way you are, but in the vein of what Liz was trying to communicate (and I thought autistic people were supposed to be the ones with communication difficulties and a lack of social skills--sheesh!!), what *are* parents supposed to do? If they love their children dearly and want only the best for them but cannot understand their children, cannot communicate effectively, cannot get across the most basic ideas, which is resulting in tons of frustration on both sides, what are they supposed to do if not try to get their children to be able to communicate in a way that the other 99% of the world can understand?

The girl I work with, Trami, maybe sometimes I'm overly picky with trying to get her to use proper grammar, because even neurotypical people butcher the English language on a daily basis (actually I mostly want for her to do simple things like use verbs in her sentences, but sometimes I'm pickier than others), but what about the fact that she clearly has so much she wants to express but CANNOT express it, because we can't understand her and she can't use language well enough to express even simple ideas sometimes, much less complex ones? *She* is frustrated at her inability to express her ideas, desires, thoughts etc. Sometimes she's more frustrated than others (sometimes she's blithely content in her own little world, laughing for no apparent reason, thinking about Grover and the lamppost (Grover said "I hate lamppost") or Tigger chasing Rabbit or some thing that I don't even know what it is and she can't tell me, or asking me if she may "say hi to babies" or if "tomorrow is a Kumon and before workout fitness", or telling me thank you for no reason and how she wants to kiss me on the cheek), but sometimes she cries for hours, and she can't even tell us why... Sometimes she's so frustrated, so sad, so angry... it just breaks your heart.

Unlike you, she cannot tell us very much at all of what she really wants, thinks, feels, believes; she can't tell us what it's like to be her, what the world looks like through her eyes; heck, she can't even tell me what she did at school or whether she's done something or not or where something is! I can only glean little bits here and there, guess that "May I grow up and be an adult" is an expression of her frustration at being told what to do, at not getting what she wants, even at being autistic in so far as it means that she can't communicate or understand, even though she does not actually know that she's autistic, but she knows that she's frustrated and that many things are hard for her... I can have these little epiphanies about how "Don't kill me anymore!" perhaps actually means that she is afraid of dying and needs to be reassured that she's healthy and safe, but those are relatively few and far between...

Of course I certainly wouldn't want to see her hurt or scared or electric shocked (how barbaric--that man ought to be shocked himself until he repents of all the suffering he's caused!), and her parents would never allow anything like that, but if any of us--and I cannot know but I can reasonably assume Trami herself included--could magically make her "not autistic", how could we hesitate for an instant? It does seem to me that a person with so much to contribute to the world is "trapped" behind a "wall" of autism... And that's not a wall caused just by unreasonable societal expectations (though it is a part, because we would all prefer that she not be stigmatized, left out, seen as "weird", etc.), but it's a wall largely caused by her inability to communicate with the rest of the world... When we're trying desperately to understand what she's saying, what's upsetting her, what she really wants, we're certainly not intentionally ignoring her or something because she's "doing it wrong", but we are only human, we can only do our best, and if we cannot understand, we cannot understand.

It is hard for me to imagine how someone as articulate and functional as Michelle can represent even Trami, who's in the middle, much less the mute child smearing poo on the walls who won't even look at people and screams at the sight of vacuum cleaners.

My sister is severely disabled. She has cerebral palsy and is also developmentally disabled, has severe learning disabilities, and is legally blind. I have thought quite a bit about the whole issue of whether disabilities are positive/diversity/actually desirable in some sense or negative/a hardship/something to be hopefully eliminated by medical science... What I can say is that my sister has SO MUCH frustration, disappointment, sadness, anger, confusion, etc., and even though she's been working on it with my mom and this great therapist, there's still so much... all the things she can't do... the feelings and desires and needs and ideas she has that she can't even fully understand much less express to others... If SHE could choose to be magically "cured" tomorrow, there is no question whatsoever that she would embrace the chance wholeheartedly. She would choose to walk, to feed herself, to read, to speak clearly, to be able to make sense of her own feelings and fears, to be able to do things by herself, to be able to have a job, have a family, make her own decisions, live on her own. She would choose not to be disabled, to be "normal", to be able to do what "everyone else" can do.

I've thought that perhaps the whole idea that disabilities make our world a richer, more diverse place, and how sad it would be if there were no longer these wonderful "special" people with their unique contributions and perspectives is really just a happy little delusional idea non-disabled people promote to make ourselves feel better... Because what wheelchair-bound person does not want to walk? What blind person does not want to see? What dyslexic person does not want to be able to read and learn with ease? What person with Asperger's does not want to be able to understand other people and interact with ease?

Are there perhaps certain things--like the very (very) high-functioning autism Michelle represents that is accompanied by augmented abilities to understand objects or systems or patterns or details others miss, and perhaps other things like maybe ADD (which I have, and which some people say is just a "different way of being" that can be positive, but which has so far caused immeasurable distress, suffering, loneliness and lost potential in my life), or maybe some forms of mental illness that are part of some brilliant peoples' creativity, maybe certain "learning differences" that co-exist with great potential in a certain area--certain conditions that we can reasonably call "differences" and see as somehow desirable...? Perhaps... But the paralyzed person, the person with MS, the paranoid, delusional person trapped in a world of disturbing unreality, the person losing her sight and entering into a world of darkness, the person who cannot use the toilet, read a book, watch a movie, take a walk, hug her family, hear his grandchildren, understand the rules of the game so he can play with the other kids, understand why people don't want to play with her, feed her own self, be what she wants to be (or really anything at ALL) when she grows up... Do these people have a desirable "difference" or in fact a difficult, challenging limitation(s)?

Are those parents whose children don't speak, don't interact, don't use the toilet, don't pay attention to the world around them, don't read or write, don't keep themselves clean, can't tolerate sounds or lights or touches, who have tantrums in public, who hit people, pull out their own hair, hug strangers, ask their classmates to marry them, won't eat anything that's not white, take off their clothes in public, talk to total strangers about their favorite video game, smear feces on walls, flush objects down toilets, sit and yell and pound on the floor, run out into the street, become hysterical if something changes, repeat the same things over and over and over, and/or sit in the corner and play with strings... those parents whose kids will clearly *not* ever be able to live on their own, have a career, have a family, have anything remotely related to a "normal" life, who will have to be cared for by either family or others for the rest of their lives, who will not be able to go anywhere without supervision, are these parents wrong to want to do something, anything to help their kids be more "normal", more functional, more competent, more able...? Of course no one should try to make you into something you're not, Michelle, and people should try to respect your particular needs as much as possible, but you obviously have many basic functioning and living skills; you can communicate brilliantly; I'm guessing you're employed; I'm guessing you don't run naked into the street uttering unintelligible nonsense, don't sit in the corner all day staring at your feet, don't ask your neighbors to marry you. You're obviously highly, highly intelligent. The "mad" genius, the eccentric artistic virtuoso, the Einstein who can't learn to read in elementary school, the Jack Nicholson character in "As Good As It Gets" who writes novels, the Steven Hawkings, Ray Charleses, Walt Disneys and Ernest Hemmingways, these folks are brilliant enough, talented enough to be sucessful despite their disabilities. Temple Grandin's autism may help her be who and what she is, give her a rare perspective on the world, of animals, and that's great, terrific, awesome, but most of those "ABA parents'" kids are *not* going to be Temple Grandin. They are of low or low average or average intelligence, they don't have some genius special talent, and if they can't fit in at all or operate in the world or communicate or keep from getting hurt or taken advantage of or swindled or raped, what kind of life are they going to have? If a person is not very smart or very talented but at least has good social skills, he or she can probably get by in the world, but if you lack even the most rudimentary social skills, what is realistically going to happen to you? Many autistic and/or developmentally disabled adults *do* live in group homes, and some of those are not great places to be, and who wants that to be their baby when he or she grows up?

OK, so I've babbled and ranted and I've been up most of the night, so I'll close this now, and please forgive me for any lack of coherence. I'm very interested to know your perspective on these things, you being Michelle and any of the rest of you who are autistic. Oh, but I did want to say, don't get me wrong, I'm all for being positive, focusing on people's strengths and what they *can* do, learning from life's challenges, encouraging people to embrace diversity and different ways of being/doing/communicating/etc., loving people for who they are, seeing the good qualities in people, but all of this doesn't change the fact that by and large disabilities are limitations, and sometimes they're very big limitations, and what parent doesn't want their child to get everything possible out of life, and what person doesn't want to have fewer limitations and more abilities? My sister sure does, I know that. And Trami, she wants to have a boyfriend, drive a car, do things by herself, not have to struggle to learn and communicate, hang out with kids her age, go to college, have a career, be independent...I've come to believe that her oft-repeated plea of "May I grow up and be an adult" is ultimately an expression of an idea that when she becomes an adult the difficulties, restrictions, limitations, and frustrations will somehow disappear, that she will then finally be able to have all the things she wants, and it breaks my heart to know that becoming an adult will not magically make her not autistic (although she doesn't even know she is autistic, but I have this feeling that in her mind she associates the limitations of her disability with childhood, with being a child), and I'm not even her parent, just her caregiver. Her mom and dad would sell their souls, pay all the money they have, give the shirts off their backs if they could make her "normal", and it's not because they don't want her to be the unique, special, wonderful, sweet girl she is; it's because they want her not to have to be disabled. And I certainly can't fault them for that.

Edited by author 07-04-2006 09:56 AM
Message on the FEATBC Discussion Group: http://www.featbc.org/cgi-local/forum/discus.cgi - Discussions on Government Topics dated June 28 2006 - that in the previous week the Ontario Human Rights Tribunal ruled that autistic children - whose provincially funded therapy stops at age six - are now free to proceed with the argument that the Ontario Provincial government is discriminating against them on the basis of age.

Thankyou Phillip.... In general and in my experience the term "meeting for coffee" is used very loosely and implies a "casual" meeting in the community at a local cafe. It has been my expereience that one can drink green tea, H20 or whatever else your "Jones" is about at such a meeting.

I hope to be out in Montreal in the fall (yuck). I suspect that Michelle and I won't be "meeting for coffee" (or beverage of choice) though.

d123

Edited by author 06-06-2006 09:27 AM
In the hypothetical situation that Dave123 and Michelle were to meet halfway for coffee, then Winnipeg is the city nearest to halfway in a straight line between Montreal and Vancouver(I don't know if Dave123 lives in Vancouver, but I chose that city beacause it's the biggest in BC). The actual halfway point is somewhere between Winnipeg and Lake Manitoba.

I wouldn't ask anyone to meet me for coffee, because I don't drink coffee, and I wouldn't assume that the person I want to meet drinks coffee.

Hi Dave123,

If you want to post on a busier board (this one only gets a few posts a month), try http://www.quicktopic.com/27/H/vJvhV4fDnBgw7

Maybe you can show me all the peer-reviewed adult follow-up studies of autistics who had early ABA/IBI. I still haven't found one. There isn't even one follow-up into school years of an early ABA/IBI program that isn't aversive-dependent.

So I wonder where the assumption comes from, that if only an autistic learns the "right" skills in the "right" way at the "right" time, then all will be well. In this case "right" means "right" for a non-autistic.

I don't know very much at all about ABA/IBI for non-autistics, by the way, except for ABA/IBI for Rett's girls, and for children "at risk" of non-heterosexual development.

I haven't been in an ABA/IBI program, though some of the behaviour analysts and ABA promoters I spoke with attempted to use their skills to alter my behaviour (I wondered sometimes if they were taking data). And clearly, some behaviour analysts and ABA promoters have deployed their beliefs about human behaviour in trying to make it very aversive for anyone to criticize ABA in any way. That is sort of the opposite of science (science requires and welcomes criticism). I believe this is called "irony".

OK.... "subscriber" or "member" or "random"... I was beginnning to worry that Michelle was going to be the one source of all of this info. hence the "dive in" invitation to other nonmembers, members, subscribing nonsubscribers and others who drift thru this QT thread.

I'll do some more journal reading over the next while... I do appreciate your perspective while also feeling compelled to continue the one program that has proven effective at assisting Aron to develop the skills he will need to live when I am dead. When I read how Michelle selfdescribed how she learns it did not sound unfamiliar to my learning style. I sort of wallow in information and then leap from not being able to do or understand a concept or skill to being proficient. One of my more interesting high school teachers once commented that he was not sure how I worked. He described my learning style along the line sof "Dave goes from A to C without checking in at B". To me it feels like I reach a critical mass and then it all falls into place without conscious effort. I recall learning to read this way. From nonreader to reading a book a day over night. Interesting.

Interesting point about everyone not learning in the same manner. Aron clearly learns implicilty, explicitly, kinesthetically, visiually, auditorially etc.... In fact "teaching" to all modalities is called for with him.

A question for Michelle.... did you ever experience an ABA program first hand as a "student"?


Gotta run... the kids need to go to school.


D.

That's right, re /m270 . I'm not even a "member" here by Dave123 standards; I don't subsribe to my own boards (I do visit them when I remember though...).

Hello to Dave from grey, wet, Prince Edward Island.

I don't have anything to add, my head is somewhere else right now. I would say that Michelle's boards have many readers and many contributors, some of us subscribe so we can read it as email rather than on the web. I consider myself a "subscriber", not a "member" of this board. This isn't a yahoo group.

Others may feel like "members", I don't know. Rather than "open for the other 5 members of this "forum" to respond to" it's probably way more accurate to say "open for the other "readers" of this "forum" to respond to", unless, for some strange reason, you only want to hear from email subscribers, not web readers.

Edited by author 05-24-2006 07:05 AM
Hi Dave 123,

Most of your questions have answers somewhere on Kev's science board, in the thread where you've posted, and where I've now responded.

That should include the references you're looking for, though I suppose I should add Hermelin (2003) re implicit learning. You can find some of them here too http://www.sentex.net/~nexus23/naa_vic.html (I link to this on Kev's board also). Some of my articles (the ones on No Autistics Allowed) have references and whatnot attached. That's so people can look things up.

A limited (and very out of date) list of autistic strengths is here http://www.sentex.net/~nexus23/naa_sen.html I can't remember if I linked to it on Kev's board. There are references at the end.

I don't know of any ABA lobby group (FEAT, Autism Society Canada, the provincial autism societies) which claims ABA-for-autism is easy and cheap. I have never seen an ABA legal case in which the parents argued that ABA-for-autism is a piece of cake and is inexpensive to boot.

I wrote about Gina Green in The Misbehaviour of Behaviourists. By the way, the TMoB board is where most people hang out here, if you're interested.

Re communication, I would refer you back to Kev's board, where there's a lot of discussion of this, and links to resources (including a published case study) that you might (or might not?) find informative. I'm sure there's something about PECS (which is a sort of behaviour intervention) there somewhere. There's a link in the direction of a really cool presentation, brimming with references (including from the ABA literature), about what reciprocity really means and how this has become distorted in autism.

I don't think anyone knows very much about secondary autism ("autistic" behaviours secondary to another condition); we still have to isolate autism from other conditions in order to figure it out. We're mostly not smart enough to study conditions together (I can't participate in most autism studies because I have another condition). That's for cognitive type stuff. In the behaviour literature, behaviour is behaviour, doesn't matter who the behaver is... though other conditions are sometimes among the exclusion criteria for ABA group designs.

Incidental learning is ABA/IBI. It is unrelated to implicit learning.

Re autistic learning being extinguished, you can look up the references I've provided below and on Kev's board. One of the links I provided has Gina Green weighing in on the problem of autistic abilities.

Why do we know autistics learn differently? Apart from the problems Dr Lovaas and his descendents have had with those autistic kids learning the "wrong" way... and apart from evidence like Iarocci et al (2006), showing that autistics figure out task demands that are not made explicit, while non-autistics don't... because autistics are disproportionately prone to having savant abilities (1 in 10 for autistics; 1 in 2000 for non-autistics; Treffert, 2000). And because we've shown via various visual and auditory paradigms (and with memory, also) that the same kinds of differences which characterize the cognition of autistic savants also characterizes non-savant autistics.

If everyone learned the same way (the same relationship between implicit and explicit learning), either the world would be full of non-autistic savants, or the world would lack autistic savants altogether. Either way, it would be a very different kind of world.

By the way, autistic strengths are often described as "maladaptive", "inappropriate" and "inadequate" in the ABA/IBI literature, as are autistic learning behaviours (which can be pretty distinctive).

Also by the way, the DAN etc parents and their ilk are also certain that chelation (etc) has made a big difference for their autistic kids. Or miracle diets, or vancomycin or secretin (still some hangers on) or whatever (Lupron, for heaven's sake... poor kids...).

The sun is supposed to come out today. I don't believe it myself.

Heh MD,

What a fantastic day we have had out here on the coast. Sorry to hear that you are stuck out east. Is it still winter (LOL) there?

Regarding your comments about the arduous nature of ABA and the financial burden... actually I am "broke" due to the costs of ABA and to the fact that I am a SAHD (Stay at home dad) and my ability to generate income is not what it once was. I quit three years ago once it began to look like A-man would need "extra" dad time. We started to go broke long before ABA and ASD entered the picture. I decided to spend more time with A-man before we had an ASD diagnosis and we thought the deal was just an extra chrom-o-zone. So I now hang with A-Man all day (for the past three years). We do cool things most of the time and some "not doing" time happens to. It is a double whammy being in charge of a payroll with little income to work with. Regardless we are working at about 30 hours per week with weekly consults via webcam. A-man thinks the "big talking head" on the computer screen is funny. We also do monthly "fly ins" for face to face consults. He appears to think that this is even funnier as the big talking head has legs and torso. Equity in the home? What equity? Soon the question will be "what home"? Such is life. It is worth it though as Aron is back. He is still autisitic and allways will be... goofy kid. I think I have to go look in on him him while he is asleep.

I use the term "evil" very loosely... sort of "toungue in cheek" as a metaphor. From my perspective this approach (ABA) has made a significant difference for Aron. He digs it. He learns via this modality AND continues to learn in other ways to. Yep... he learns impicitly and makes leaps from A to C all the time.... and he learns via explicit instruction to.

I know Gina Green's work. She has some interesting points. Larry is bringing her to town if I recall correctly.

The perspctive you present re shared realities (lack of) reminds me of "Stranger in a Straange Land". Not that the novel captures the whole reality that you are alluding to but I liked the story. Aron and I do have enough overlap in our worlds for us to communicate on many levels. He was ALLWAYS trying to communicate (as the earlier article you note suggests). Now, however, we have some more effective communication tools. Since we began our new program PEC seems to work. He asks me for specific things and I ask him for specific things. Rather like a "trade" language. Functional but lacking in refinement. He uses words (once in awhile) and signs (also once in awhile) to enhance our "story telling". He also yells and stomps around This seems to be his signal for me to initiate communication via PEC. Food, music, toys, activity and the dreaded "self care" ... no higher order constructs like "evil" have entered our conversations yet from what I can tell. I am not sure that they ever will. We are not thinking in terms of manding and tacting but may one day down the road... or not.

DS and ASD make for a very odd combo. He is aytipcal to the standards many folks present.

You wrote: "....my own view (speculative, but based on evidence, some of it from ABA studies) is that implicit learning is different in autistics from what it is in non-autistics".
I say hook me up to the articles (evidence you allude to). One of my alumni cards will work to get me into the university's on line catalogue. So many schools and so much more to learn. Is there an "autism" specific definition or operationalization of "implicit" learning that differentiates the differences? Links? references? Or are we just "wondering" about these as possibilities?

You also wrote: "I've written that the reason ABA/IBI is so difficult and arduous... is the problem of getting rid of autistic strengths. And it is our (measurable, replicated, etc) strengths that get in the way of the one way to learn which is permitted in ABA/IBI."
Interesting.... What strengths are you talking about. I think I get what you are implying but could you be more specific?

You wrote: "Reading Lovaas and colleagues (e.g., Epstein et al, 1985; Lovaas et al, 1987) struggle with the problem of these autistic kids who just keep on learning things left and right without either teaching or reinforcement is really something. But Dr Lovaas and other behaviour analysts don't want this other kind of learning; they have to extinguish it so autistics can perform properly in an ABA program."
Really? When A-man pulls a stunt like that (learning on his own without instruction) our SOP is to go with it and support it. Failure to do so is just bad practice.

Question: Does the concept of "incidental" learning allow for some incorporation of implicit learning? It seems like it might.

Oh... heh... my questions, obseervations are open for the other 5 members of this "forum" to respond to.... Michelle can't carry all of the weight responding. Fire away ya'll.


Dave.

Ps. I once worked with children who had mental health issues. I "grew up" reading the "anti-psychiatry" Phoenix Rising material so I was very anti-psychiatry and anti-meds even though I worked in the feild. Then one day one of my "kids" (client) overheard my anti-meds "rant". He told me I was wrong and that meds had made his life OK. I was astonished (I was very green as this was back in '89). Since then I know (I think) that correcctness of an approach or intervention needs to be evaluated from the perpsective of the "client". From what I can tell Aron likes his program. I like his program.

Edited by author 05-24-2006 03:08 AM
Hi Dave123,

There are a lot of behaviour analysts and some others (in BC--I'm in Montreal--you'll have Gina Green coming your way shortly) who state that the goal of early behaviour interventions in general is to take advantage of the "plasticity" in the developing brain (see Howard et al, 2005, for maximum arrogance in this area). They want to permanently derail and change the "wrong" way autistic brains develop, function, and are allocated. But I see no indication that they have any inkling (or care to have any inkling) of how or why an autistic brain works as it does. And they arrogantly believe that brains can be behaviourally re-modelled in a perfectly controlled way, without any notion that there might be associated losses or risks or harm.

I've written that the reason ABA/IBI is so difficult and arduous (if it isn't, why is it so expensive that you're broke?) is the problem of getting rid of autistic strengths. And it is our (measurable, replicated, etc) strengths that get in the way of the one way to learn which is permitted in ABA/IBI.

ABA isn't about "learning" in general, and behaviour analysts aren't experts in learning. They are expert in one kind of learning. They deny the existence of other kinds of learning. Autistics are good at a kind of learning that is denied by behaviour analysts (because it is not behavioural).

Reading Lovaas and colleagues (e.g., Epstein et al, 1985; Lovaas et al, 1987) struggle with the problem of these autistic kids who just keep on learning things left and right without either teaching or reinforcement is really something. But Dr Lovaas and other behaviour analysts don't want this other kind of learning; they have to extinguish it so autistics can perform properly in an ABA program.

I haven't written anywhere that ABA/IBI is "evil". I've written that it requires much greater scientific and ethical scrutiny. Outside of my work, ABA/IBI has had no ethical scrutiny whatsoever (both by those who support and who oppose it). And the scientific scrutiny has largely been totally incompetent. I have no idea why parents would look at this and applaud.

You wrote:

"Encouraging and enhancing his ability to communicate his needs, wants and desires in a manner that is understandable to others is the goal."

But for this communication to be "understandable", he can only ask what is acceptable to ask, according to the needs/expectations of other people. Autistics with pretty standard-issue speech are still ignored, because what we communicate is still considered wrong. In order to be "understandable" in the sense you mean, we have to become similar enough to you in our needs that you will not discard what we communicate.

As I've written several times, the needs of autistics (adults and children) will seem outlandish to many non-autistics. Well, the feeling is mutual (I'm amazed at how much non-autistics constantly need).

But, e.g., I've tried to ask for very simple, cost-free things in a workplace, at a Tribunal hearing, etc, in order to be able to function. One of these things is that my questions be responded to in a way related to their content, even if the response is "there is no answer to that question" or "I don't know the answer" or "you are not allowed to ask that question".

But this is totally rejected, because it's considered an outlandish demand, even though it would be very simple to do (I have transcripts which show how ridiculous this gets, with non-autistics simply refusing to consider that I need a response to questions that is related to the content of those questions). The result is massive confusion on my part when my questions are not responded to at all, and a ton of wasted time, and the assumption on the part of all the non-autistics involved that I'm totally unreasonable and probably stupid too. Etc.

What would a behaviour analyst do? I would have to be trained to have the right kind of needs. But then I would flunk as a researcher, because my strength as a (non-credentialed, uneducated) researcher is that I need and use vastly different kinds of information in vastly different ways from the non-autistic geniuses I work for. It would be very arduous to destroy that strength, and replace it with a mediocre (at best) and unsustainable imitation of what the normal people do.

Anyway, I was going to recommend you read the ABA discussion on Kev Leitch's science board http://www.kevinleitch.co.uk/forum/viewtopic.php?id=15&p=3 , but I see you've been there already, so some of the above might be repetitive to you (sorry about that, I'm a bit busy and distracted). I suggest you check out some of the sources referred and linked to there.

Dr Reber's definition of implicit learning is okay (though not his best), by the way, and learning to ride a bike is done via procedural, not implicit learning, so you know at least one of your sources is not reliable. And, as I wrote, my own view (speculative, but based on evidence, some of it from ABA studies) is that implicit learning is different in autistics from what it is in non-autistics. I'm going to answer your questions on Kev's board when I get the time...

You might be interested in this dicussion too http://www.kevinleitch.co.uk/forum/viewtopic.php?id=52

Have to run...

Hi again,

Just caught another point you made in your post below... you wrote:

"One way to change this is to put the child in an ABA program. This way the child must change (ABA is powerful) in order to meet the needs of his/her parents. This can make a child happy (he is going to be awash in positive extrinsic reinforcement, which is a nice big change from long-faced unhappy parents), but it also involves removing the kinds of communication and learning an autistic child already had, and replacing this with the "right" versions."

A couple of thoughts... ABA is not about meeting my needs as a parent. Changing Aron's "core" personhood is not the point or goal. Encouraging and enhancing his ability to communicate his needs, wants and desires in a manner that is understandable to others is the goal. Even if I was super sensitive to his exisiting "autisitic" communication style what occurs outside of our relationship in the community is potentially problematic? He can comm with me but others really wont get it. Every child is taught how to express his or her needs/wants/desires in a manner that is understandable to others. The process of enculturation is what occurs for all children (you and I). My first born used to cry when he was hungry. Then we taught him, inadvertantly, to SCREAM for food (such fun). Then he learned to use a few signs. Then he learned to use spoken word. Now he just goes to the firdge and helps himself (he is 9 and eats ALL DAY LONG). My point, such as it is, is that some kids need more structure (ABA?) to aquire these skills. Replacing "autistic communication" with the "right" style of communication is also not the goal... supporting the development of functional communication is the goal IMO.

I guess I am trying to say that ABA is not "evil" in and of itself (maybe some of the applications some people deploy are). The goal is not alterning the core personality of my son in my opinion nor alterning "brain" patterns. The goal is to support Aron's efforts to have his needs met. Just as not every Parisian speaks English not every person Aron encounters will speak "autisitic". He will need to be able to do this for himself until the universal translator is fixed/built. It is simply not realisitc for me to expect all French speakers to speak English and it is not realisitic to expect all folks at large to be able to speak "autistically". PECs, ASL, or spoken word... he will need some way of telling the world and me to fluff off and there is no point in doing so if the folks at the other end don't get the "language" being used.

TTFN


Dave.

Hi Michelle,


You make many good points in your post. Thank you. Some of your observations are the very issues we have struggled with and continue to struggle with today.

Without a doubt Aron tried to communicate before ABA and we tried to be sensitive to his efforts. It (our efforts to learn the "autistic way"), in and of itself, was not working. "Ignoring" his efforts did not happen. We just did not "grok" (understand) what he was trying to tell us. Keen '05 was one of my first stops along the way for background and that part of the "shelf" is about 12" deep now. Our "team" is pretty cool and in this spirit I am pretty sure our therapists have a set of hidden programs that they are using on us (mom and dad) in order to get us to be more "autisitic" and sensitive and, although we have an ABA program up and running, we also "allow" him to be who he is.

ABA is "teaching" (a structured educational program). All children are taught to communicate within the context of a strucutred and formal language. Regardless both the informal and formal (ABA) language programs support the development of language. Some folks need direct instruction (ABA in the context of our conversation) and others just suck it up through observation and hanging out with parents. Teaching Aron to "talk" is important. Without developing the ability to speak and relate in a non-autisitic manner he will be dependent on those who can speak "autisitically" and these folks are in limited supply. ABA seems to be enhancing Aron's ability to communicate with duffers like me. He is awesome and trys so hard. He is so happy when I do finally get what he is saying.

To lend some background to our "conversation" I wanted to let you know that I have worked with kids for years (since '89) in a wide range of roles. One of these "roles" involved working with children in schools who were deemed "behavioral". They did not fit into the school or community. Their brains may have worked differently or not but that is not the point. We (our system) could have changed to allow them to be "non-behavioral" but we have not changed (the system or our thinking ... I use the term "our" as a very wide general term... there are a few who have changed... a bit). As a result I was hired on to work with these kids. Part of my "job" was to "trim off" the pointy parts of personality that would not fit in the "good student box". I quit. I could not do this. To do so would have been wrong. "Stuffing" our son into the "normal" box was and never will be the goal.

The assumption was not that he could not learn or communicate. The effort has never been to extinguish autistic traits and abilities. Our goal has always been to do whatever we can to allow our son to be happy. However, teaching our son to "speak" in an non-autistic way may be akin (in a very loose metaphor) to teaching me to speak C++ or French (both of which I am not very good at). I am an "english thinker". Learning to speak "French" is very difficult for me as they "do language" all backwards with wonderfully odd "rules". It is difficult for me to speak and listen in an "autistic" modality and I am sure it is difficult for Aron to learn to speak my "language". If it is ever going to work for him, though, I think he will need to be able to speak "non-autisitically". One day I hope he will be able to post on a forum like this and will be able to tell moms and dads what life is like for kids like him.

You made the following observation: "I don't think I've ever read a promotional account of any kind of autism treatment (from ABA to chelation to Son-Rise to RDI to miracle diets to HBOT to whatever they're selling this year) which did not claim that the autistic child was totally miserable (unable to communicate/learn/etc...)". I wanted to be clear that I am not selling or promoting ABA. In my orignal post I was simply relating our experiences. I do not own shares in "ABA Inc.". I suspect that ABA is just one stop along the road... next year we may not be using an ABA approach as Aron's needs may dictate a different style of teaching is needed to support his development.

I cannot speak for FEAT membership as a whole. I suspect that most of the moms and dads of FEAT do simply want their kids to be happy. Maybe the assumption that is being made is that in order for the kids to be happy they need to be able to fit into society and to do so will require skills that allow this to happen. Another assumption may be that without formal teaching this will not happen. Being "normal" or "loss of diagnosis" may be one way of thinking about this... I suspect that even though some kids lose their diagnosis the brain still functions in a non typical manner. This is akin (maybe) to folks like my wife who are proficient at speaking French but still think like "anglo" speakers. She can pull it off in Paris or Montreal but she still Anglo as that is how her brain is wired after 40 years. The point is that she can communicate and that when she orders eggs and bacon for breakfast she gets what she wants (but I seem to get something else when I try.... ).

Internal vs. External motivation... the endless deabte continues. Aron works for both I would say just like me and everyone else I have every met.

Your observation about FEATers not wanting to know more about Autism is interesting. It is what drives me daily to read, talk and post... I want to understand. "How autisitics develop" and learn and grow and thrive is an obsession I seem to have fallen into. The intent is not to change Aron but to give him functional skills so he can interact with others in society so as to have his needs met.

Anyway.... heh... do you live in BC? If so maybe we can meet in person for coffee? You can continue to work on my assumptions face to face. ;)


All the best.



Dave.

Edited by author 05-23-2006 03:03 AM
Hi Dave123,

Thanks for dropping by.

There's a lot of science accumulating, showing that training parents to respond to autistic children is really "effective" in helping those kids. All children do badly when no one responds to them (in this case, not responding maybe because they are pretty sure that autistic people can't/don't communicate or learn, unless we communicate and learn the "right" non-autistic way). They get miserable. They might get anxious and they might panic. They might after a while stop even trying to communicate or interact (due to constant failure). Their actions might seem more restricted because they aren't getting what they need--in order to learn, develop, etc.

There's good science showing that very young autistic children (ages 2-5) who are labelled "non-verbal" (less than 10 signs or "utterances") try persistently to communicate with their parents. And they are ignored. The autistic kids notice this, and then use different and adjusted strategies to "repair" the failed communication. And often they are still ignored--their parents don't notice they are communicating (Keen, 2005).

Here's an autistic describing this kind of problem http://ballastexistenz.autistics.org/?p=105 (I like the last paragraph a lot).

If you were persistently ignored or reacted to in ways that had nothing to do with what you need and how you communicate, maybe because everyone around you decided you just didn't communicate and learn (because they ways you communicate and learn are considered "wrong" or non-existent), you would be miserable and anxious too. Your life would become more and more limited.

Kids who have parents who assume the kid is incapable of learning or communicating (again, in this case, maybe because they have been told that autistic kids can't do these things at all, or because they believe there is only one way to communicate or learn) are going to have problems, no matter what their diagnosis is.

One way to change this is to put the child in an ABA program. This way the child must change (ABA is powerful) in order to meet the needs of his/her parents. This can make a child happy (he is going to be awash in positive extrinsic reinforcement, which is a nice big change from long-faced unhappy parents), but it also involves removing the kinds of communication and learning an autistic child already had, and replacing this with the "right" versions.

The child learns that the way he learns, communicates, etc, are wrong, and make the people around him unhappy. Both what an autistic child would communicate, and how he would communicate this, are replaced. What an autistic child needs is assumed to be wrong, and these wrong autistic needs are replaced by the "right" non-autistic needs. Then everyone is happy...

Nobody has thought about the consequences of this, but the extinguishing of autistic traits and abilities (including autistic learning) is on the record in the science of ABA-for-autism.

And while the science has been indifferent to this, a large body of legal testimony (Wynberg, Bettencourt), backed by ABA experts, reports that autistic kids who have been in ABA for years, and whose programs diminish in any way, rapidly not only lose their "gains", but get distressed, out of control, etc. The legal case I referred to below is about this problem with ABA and autism.

The President of BC's autism society has stated recently that if his own son's ABA program diminished, this boy (who has been in ABA for a very long time) would lose everything he had "learned", and just naturally have to be in slapped into an institution, immediately. Poor kid.

I don't see how the actions of FEAT, etc, help autistic kids to be happy. The message is, so long as we are autistic, we are miserable and doomed and don't belong in society. The message is, so long as we are autistic, we can't communicate, learn, develop, progress, interact, participate, etc, and are just these gigantic and appalling burdens on society. The message is that ABA/IBI is the only way for autistics to learn anything at all or to develop or progress in any way. The message is that if a child doesn't "recover" (pass for normal, "lose" their diagnosis), s/he must stay in ABA/IBI forever (so far as I can tell), otherwise the child will "disintegrate" and simply have to be placed in an institution.

I don't think I've ever read a promotional account of any kind of autism treatment (from ABA to chelation to Son-Rise to RDI to miracle diets to HBOT to whatever they're selling this year) which did not claim that the autistic child was totally miserable (unable to communicate/learn/etc...) before, and was very happy after.

What I've always wondered about the ABA parents (FEAT/ASC/etc), apart from what they want (and I've been told by one of the ABA lawyers that the parents, in this case many of them, simply said--"we want our kids cured", as in, they want normal kids) is why they have so little interest in autism--in what autism is, in what autistic differences are, in autistic abilities, in why autistics are different from non-autistics, in how autistics develop, perceive, learn, etc. The assumption is that autistic cognition and neurology--how we learn, what we can do, etc--are sort of garbage to be thrown out (and who looks at the garbage?). The assumption in ABA (this is in the science, and everywhere else) is that there's nothing to lose--that autistic traits and abilities are "nothing".

I'll leave you with an article that outlines the opposite approach to autism. See http://www.ls.wisc.edu/L&STODAYv9no2/L&STODAYv9n2p4.pdf And thanks for dropping by and telling us about your really cool kid. And here's an article about another really cool kid, who is a young man now http://www.isn.net/~jypsy/AuSpin/senate05.htm

Hi all,

I really do hope that I am not offending folks but I wanted to relate a quick story about my son. My son is 4 years old ( and quickly approaching five). He has been diagnosed as having an Autism Disorder. He also has Down Syndrome. We have recently begun a home based ABA program. It is wonderful and he loves it. He is happy again and so I am happy. At the age of two he spoke and signed and had a vocab of about 40 words. At about the age of 2.5 he basically stopped communicating and really escalated his stim behavior. He was not happy. He was stressed and cried a lot and seemed to be having serious anxiety panics. He really seemed MISERABLE. We tried the usual and made great efforts to change how we "did life" as parents and as a family but this seemed to have little effect even though we really tried to not "cram" him into our "box" of expectations (lots of critical self reflection involved in this process to say the least). We "ramped" up our efforts to communicate with him under the assumption that if he could tell us what was going on we could do something about it for and with him. Naddda. Didn't work out so well. He seemed even more miserable. So... we turned to ABA. Aside from being driven into the poor house due to the need to pay for this approach out of pocket ABA has been wonderful. Our son is happy. He is learning. He is communicating (spoken word, sign and PEC).... and I say again HE seems happy. He has discovered his brother again. He has discovered friends (NO not his therapists). He has discovered that he can interacte with us. He is having fun again. Don't get me wrong he still loves to spin and wiggle... but so do I and stopping the "stims" was never the goal for us. Anyway my point is that without this approach it seems to me that he would still be terribly upset, stressed, miserable, isolated and anxious. ABA has provided a means to improve his "happiness" factor. I think part of this is due to the fact that he has rediscovered that he can communicate with "aliens" (us parents). The fact that he seems happier makes me happy as I love him. I wish I could do more. Michelle asks (below) what FEAT/ABA parents want... I think that most of them want their children to be happy... and as my son began to be absorbed in his "stims" he was not happy. So... to conclude my "hat is off" to our "team" and to ABA as an intervention approach. It has allowed my son to rediscover happiness. We are not after "normalizing" our son (as the "trouble with normal is it only gets worse"). We just want to do what we can to allow him to be happy.

All the best.

Dave.

Yes, that's a case where ABA parents are asking for "medically necessary" ABA in schools. This is different from Wynberg, where ABA is asked for as education.

In the BC case (I have a news story somewhere, and have quoted it re dragging autistics back from the abyss of institutionalization, or words to that effect), the ABA parents are saying that autistics must have constant medical treatment (that would be ABA) in typical classrooms. A failure of schools to allow constant medical treatment of autistic children while those children are in class is considered a violation of the child's rights and is held responsible for making a child go out of control, become violent, etc.

The FEAT board posting is the first I've seen that they are demanding to have their consultants in schools, not just therapists. I assume also in this case that the ABA parents are paying for treatment privately. ABA is not in the healthcare system in BC. Or maybe I'm overlooking something...

So far as I can tell, with current popular ABA programs, it looks really dangerous for any autistic child who has undergone ABA to not constantly be surrounded by his/her ABA program (medical or not), with no upper age limit that I know of (according to Wynberg, any ABA service age limit would violate the Charter).

Wynberg included a demand that non-medical ABA (because this was the decision made by the Wynberg ABA parents--to pursue ABA as education) be provided--to children in the health care system. [boggles briefly] Actually, this means that if an autistic child becomes sick (in this case, meaning genuinely sick with something like cancer) or injured and requires hospitalization or any other interaction with the health care system, then this system has to keep that autistic child surrounded by his/her ABA program (otherwise the child will immediately get out of control, etc). The parents did not win this and I think (no time to check) cross-appealed this part of the decision.

It's hard to understand what exactly the ABA parents want, except for normal children.

Edited by author 04-04-2006 10:31 AM
Information on the FEATBC chatboard about a case which started yesterday (3 April 2006) in the Supreme Court of British Columbia between an Abbotsford family and the School District of Abbotsford, and the BC Ministry of Education. See http://www.featbc.org/cgi-local/forum/discus.cgi - General Topics Discussion under Sunday April 2, 2006.

It is "about schools blocking children in ABA treatment programs equal access to education by barring their properly trained ABA therapists and Behavioural Consultants from the schools."

Hi Philip,

"Access Now" is run by Charles Matthews, who is quoted and mentioned in "An Autistic Victory".

Either Mr Kavchak hasn't read Sallows & Graupner (2005), or he is deliberately misrepresenting it. But I agree with Mr Kavchak that the Auton SCC decision was a "tremendous blow" to his community--the community of people who believe that autism is a cancer-equivalent disease.

Edited by author 02-14-2006 05:28 AM
Hi Michelle,

The ASC has this link -http://www.autismsocietycanada.ca/pdf_word...y,%202006%20pg4.pdf - to an article by Andrew Kavchak in Access Now, January 2006 on the first anniversary of the Auton decision by the Supreme Court of Canada.

Mr. Kavchak refers to a study by Dr. Sallows of Wisconsin, which was published in the American Journal of Mental Retardation (November 2005) "that when children with autism get IBI/ABA treatment 48% of them develop so much they lose their diagnosis. The rest of the kids make great progress in their development."

He describes the Auton decision by the SCC as "horrible", and "a tremendous blow to our community which exposed the false promises of the equality provisions of the charter."

But it is contrary to the meaning and intention of those provisions that equality for autistics means the right to receive treatment to become non autistic.

Hi Mike, that's funny, because Sallows & Graupner (2005), the supposed Lovaas replication study, lists the work of the Koegels as a reference for what their ABA program included.

Hi- I think they reject it because it doesn't follow Lovaas or DTT principles- just the Koegals Pivotal Response Training- still has ethical challenges of course

Edited by author 11-23-2005 10:02 AM
Hi Philip,

This year some other Canadian ABA parents have produced a "fact sheet" stating that we are each a $7-10 million burden on society.

ASC's new President resides in Nova Scotia, which has a post-Auton ABA/IBI program within the healthcare system. Ms Fenton and ASC seem to reject this, apparently because only services dictated by the federal government are acceptable to them.

Edited by author 11-22-2005 04:54 AM
Here is Autism Society Canada's press release for the first anniversary of the Auton decision by the Supreme Court of Canada - http://www.autismsocietycanada.ca/pdf_word...0Decision%20PRE.pdf.

According to ASC unless autistic Canadians receive ABA/IBI it is likely that they will be dependent on the state for their entire lives, with a cost of two million dollars for each person.

jypsy wrote:
"Yes Clay, he's seen it & thinks it's pretty cool. He bought himself a car on Halloween (he just got his permit & can get his licence in 6 months). It's not an Aspie..er Aspire..it's an Accent."

Yeah, my car is an Accent too, but you probably already knew that. I had another one, a '95, for 7 years, and then bought a 2002 in Feb of '03. Just turned 30 thousand miles on it. On both cars, I removed the Hyundai and Accent stickers. Didn't want to give free advertising to the manufacturer. It wears the Aspie sticker proudly.

Edited by author 11-19-2005 02:07 PM
Thanks Clay and Philip and jypsy, and happy birthday (late...) to Ben.

It's today, the anniversary of the Auton SCC decision. It has been a strange day for me (and I'm sure will keep on being strange). It's snowing. I have all these ethical problems on my plate, sort of irony at work.

I remember the morning of the Auton decision last year, and how I did not want to turn on the radio. And how I could not believe the ABA parents lost, or that the SCC had somehow emerged from all those pages of anti-autistic arguments based on thousands of pages of anti-autistic evidence and still came up with a decision that did not harm us. And that for sure was a victory.

I recently talked to the CHRC lawyer I have to work with and tried to explain what it was like for me to be treated as an equal at the SCC, how stunning it was, to have the same rules apply to everyone and there not being some kind of exception that excludes or diminishes autistics.

Congratulations to Ben on his 16th birthday. The third son of the third son.... of the third son - sounds like a song title.

Yes Clay, he's seen it & thinks it's pretty cool. He bought himself a car on Halloween (he just got his permit & can get his licence in 6 months). It's not an Aspie..er Aspire..it's an Accent. He is tremendously interested in autobody work - everything from painting to modifying (chopping parts & adding parts) custom interior work etc etc. It will be interesting to watch him exercize his creativity on his car.

Unfortunately his insurance will cost more than twice what he paid for the car and 10 times what it will cost us to insure it until he is a licensed driver...

I have another son turning 20 in 2 weeks and 2 weeks after that Alex will reach the Age of Majority (under the PEI Disability Support Program they originally decided that children would not be adults until they were 21 - a number of us fought that and they lowered it to 18). Looks like it won't take long for him to exercise his right to vote....

Congratulations to Michelle, on the anniversary of Auton. A fine victory that was!
And congratulations to Ben, for his 16th birthday. jypsy,
have you shown him the pic of my car, with the "Aspie"
sticker on it, on the Advo site? He helped make it happen.

Another great cause for celebration Philip!

Yesterday Ben, my Aspie son, provided the occasion - he turned 16 - on the 16th - that makes it his "lucky year" Full moon too... Ben is our 3rd son. His dad was his dad's 3rd son. His grandfather & great grandfather as well were 3rd sons. The pattern goes back at least 5 generations.

"Parents of autistic children were outraged by the decision" (said endless press reports) - yeah, but not all parents. Last year we celebrated the Auton decision with a Turtle Cheesecake...

--jypsy raises her coffee mug... cheers Michelle, cheers everyone.

Today is the first anniversary of the Auton decision by the Supreme Court of Canada - an autistic victory.

Hi Philip,

I agree, re Mr James writing nonsense. But it seems impossible for Canada's ABA parents and their allies to make accurate arguments in support of their position.

We are left to wonder what would have happened if at any point any of the ABA parents had made an accurate and respectful request for services. That has not happened yet and seems unlikely to happen in the future.

Edited by author 09-14-2005 04:24 AM
According to Lorne James of the Conservative Council - http://www.conservativecouncil.ca/disabilities.htm - the Supreme Court ruling in the Auton case "removed the right to special-needs education for people with disabilities in Canada." That is nonsense. The Auton decision was decided on health care, not education. It doesn't affect in any way the right of disabled Canadians to receive special-needs education.

I posted this information first on the TMoB board, but it belongs here too. This link goes to a British Columbia Human Rights Tribunal decison re Lovaas ABA for an autistic adult http://www.bchrt.bc.ca/decisions/2005/pdf/..._2005_BCHRT_247.pdf

This one goes against my prediction that lower courts and tribunals would ignore Auton (or circumvent it). I am betting that this tribunal decision will be appealed.

To read about those involved in this case, see http://www.ont-autism.uoguelph.ca/cucek-bc.html

Edited by author 06-14-2005 06:36 AM
I have no idea why governments (including the federal government) have had so much difficulty reading the Auton decision accurately. This is something *else* governments have in common with Canada's ABA parents.

My guess (which risks being totally worthless) is that the Ontario government will invoke Auton in order to argue, in a general way, that elected governments must be entitled to make the difficult decisions necessary in order to allocate program funding.

They will maybe also use Auton re their contention that the decision erred re ABA/IBI being "emergent".

Edited by author 06-13-2005 01:36 PM
The Ontario Government cites the Supreme Court's decision in the Auton case as a ground for appeal. However the Supreme Court ruled in Auton that the government of BC did not have a Section 15 obligation to fund ABA/IBI therapy for autistic children under medicare. The Ontario Superior Court decided in Wynberg that the autistic children have a Section 15 right to receive ABA/IBI therapy as educational provision, funded by the provincial government.

Edited by author 06-11-2005 09:40 PM
If I were more given to (or able to) speculate, I would probably spend some time wondering what would have ensued, had the Auton parents won.

While the current Canadian situation is grim and going downhill, facing this reality without having had any kind of relief or victory or any sign that autistics are human at all in Canada would be dramatically more difficult.

Also, I don't think that anything at all will ever satisfy Canada's ABA parents. Their needs are numerous and enormous. No court case will ever resolve this.

The Ontario government's notice of appeal in Wynberg has been posted here http://ca.geocities.com/splitter@rogers.co...tNoticeOfAppeal.pdf . The government voices many objections, but has no problem with the dehumanization of autistics, and the comprehensive denial of our worth, which is so prominent in Justice Kiteley's decision.

As usual, the "adversarial" government and ABA parents agree entirely where it counts: autistic traits and abilities are worthless and useless; autistics can't learn except via ABA/IBI; without ABA/IBI, autistics are inherently doomed; autistic children are damaging to their own families; the only good autistic is an autistic complying with an ABA/IBI program; autistics who are not in ABA/IBI are not qualified for rights guaranteed to everyone else, or for membership in the human community; etc.

Hi Michelle,

Two days ago was the first anniversary of the historic Auton hearing at the Supreme Court. The first time at which a factum by an autistic person was presented.

Then five months of anticipation, of apprehension, of not daring to hope until the Supreme Court decision last November and that historic autistic victory.

And here's an article about the decision in Chaoulli http://www.theglobeandmail.com/servlet/sto...1/BNStory/National/

I glanced at the decision itself. It is incredibly complicated. Experts are going to have an interesting time deciphering it.

Here's an article about Chaoulli http://www.iht.com/articles/2005/05/23/news/doc.php reprinted from the NYT.

Edited by author 06-08-2005 04:23 PM
The Supreme Court of Canada decision in the Chaoulli case is to be released tomorrow morning (June 9). The relevant press release is here (I don't know if the gigantic URL will work) http://www.lexum.umontreal.ca/csc-scc/cgi-...thod=all~~x=19~~y=6

Chaoulli was heard the day before Auton last year, on June 8, 2004. It is nearly the opposite of Auton; the two cases were frequently discussed together. In Chaoulli, it was argued that obstacles in the way of a person privately (in this case, with private insurance) paying for medical services, and in effect, circumventing waiting lists in the public system, are unconstitutional. The very existence of Canada's public health care system was said to be at issue in Chaoulli (as was said about Auton).

Tomorrow is the first anniversay of the Auton Supreme Court hearing.

Thanks Philip...

I really have no idea re the Tribunal. There are many things that have to happen first. There is supposed to be an attempted conciliation process. But my employer may, and is in fact likely to, seek judicial review of the CHRC decision. I'm afraid I have no clue of what this entails either.

I suppose I'm just going to wait to see what happens. All I know about the Tribunal is that I don't get a lawyer (there is a lawyer who represents the Commission), and that the case may be heard by one or three members of the Tribunal. The procedure is like any other legal case though not quite as formal (so they write).

I guess I'll have to wait and see. I'm less dancing with happiness than collapsing with relief. It would have been truly terrible to have lost this one at this stage, even if I was braced for losing. Maybe in a few days I'll get up and dance...

Hi Michelle,

I've read on the Canadian Human Rights Tribunal website, hat the process from a case being referred to the tribunal and the tribunal's decision can take up to a year. Reading about the process for a Tribunal hearing, it is certainly a formidable procedure.

I very much support the existence of a Human Rights Commission and a Human Rights Tribunal.

Hi Michelle,

I am very happy for you that you have won at the Canadian Human Rights Commission. < does a dance of joy> About how long will it be until the Tribunal hearing?

Edited by author 05-30-2005 11:35 AM
[Cross-posted from the Misbehaviour comment board]

I haven't written too much about my own legal cases, except for small pieces here and there, but today I got notice that I have in effect won at the Canadian Human Rights Commission.

This is re the big human rights case involving my employer.

"Winning" in this case means that the Commission has judged that an inquiry at the Canadian Human Rights Tribunal is warranted. Technically, this means that a hearing will be called.

It is unusual for any case to get this far, much less a disability-related case. It took three years to get my case this far, and there were huge set-backs along the way, as I encountered Commission employees who were "sure" about the nature, worth, place, etc, of autistics (e.g.).

Many obstacles remain. There is supposed to be an attempted conciliation. My employer is likely to demand a judicial review of this decision. Etc. And even if these obstacles are overcome, there is still the Tribunal hearing itself.

But--I can't believe I survived this far. This case became more and more difficult to argue as negative views of autism became more and more standard and implacable in Canadian society and jurisprudence. My first case at this Commission was settled in my favour four years ago, which was okay, but does not help anyone else (it is not on the record as a Commission decision). But finally, there is a decision at the level of the CHRC and the Canadian Human Rights Act, that autistics are human enough, at least, to merit consideration at the Tribunal.

I still can't believe it.

I have a son who is 5 years old and has autism. My son is a revamped version of I.B.I programing. I have seen him regress in his intelligance that is why we are removing him from the program in the fall.I am not awe struck by the fact that all people with autism are very smart like Michelle Dawson. Society has a problem with facing issue the of autism they would sooner get rid of the problem than deal with it. I only have one child and he has autism. People may look at him and think it weird or strange the way he acts. He is who he is I don't want some behaviorist to tell me what is right from my child. I am hopeful that my son will grow up knowing that he is loved for who he is.

As I've written in legal cases, and said so many times it is automatic, once my employer knew I was autistic, they said/wrote that I am dirty, crazy, dangerous, out of control, incapable of doing my job, and that I was violent and likely to show up at work with a gun. The letter in which this was written was shown on national television (in French, on Radio-Canada and RDI; and around the world on TV5), not long after I found it. That brings back memories.

Canada Post was obliged to apologize (they did, at the national level, and the President and CEO also sent a letter of apology), and pay a large settlement. But that did not fix things, because of course I kept right on being autistic.

Canada Post has repeatedly, regardless how they have treated me, asserted that my work and my work record are "exemplary" and "impeccable". In my entire career, no disciplinary measure, of any kind, was ever taken against me (etc).

But some of this is still being litigated.

I don't have to worry about falling through the floor, being in the basement, but I sometimes wonder about rodents, etc, falling, some day, through the ceiling (they certainly travel around up there; I'm sure some of whatever is up there probably eats drywall...). I do already have a big patch in the ceiling, from the plumbing upstairs leaking.

Edited by author 04-20-2005 01:17 PM
My self-care must be good enough as I keep healthy. However a few years ago a smallish part of the floor in the bedroom of my house collapsed onto the living room below, making a gaping hole. I was out at the time. I have sort of repaired it, but I don't stand on that part of my bedroom floor.

There are other areas in which my house is in need of repair and renovation.

I have heating in two rooms only, a gas fire in the living room -it gives a warm cosy glow - and an electric radiator in the main bedroom. I have a two bedroomed house.


I may have tried to use chopsticks a long time ago, but not since then.

I can't understand Michelle, why your employer should assume that you are dirty because you are autistic, unless they think that all autistics are dirty.

Mike, I'm delighted to report that I pay my bills. I feel quite mature....I would be terrified not to. When I get a bill I drop everything else and pay it immediately (or else I get distracted and forget).

The psychologist was aghast in retrospect. I was just answering her questions about problems with self-care. I hadn't thought much about it before (this was five years ago), because I didn't know what other people did for self-care. I assumed everyone found it just about impossible, and greatly admired practically everyone just because they did what I found nearly impossible with such ease. I went right on thinking I could achieve this ease if I tried harder for...decades.

I've only ever had one pair of chopsticks. I've used pieces of them in ad hoc repairs (usually involving both hands) of things falling apart in my HCRR. There is not much of them left. I should maybe buy another pair?

It was after my employer knew I was autistic that they decided I was dirty (I may not be entirely tidy, but I am not dirty). And I worked in a place where some of the employees literally stank. But they were guys. And they were normal.

I'm lefthanded and use chopsticks in my left hand. If i eat rice with chopsticks then you will find rice all over my floor.

I am sure I do not wash my face in the 'appropriate' way. I think I mentioned before that not one of my male friends that live on their own would pass an inspection by a social worker determining if they have independent living skills. Many NT men in their 20's and 30's have moldy plates in their kitchen sinks and bedroom, bathrooms that are never cleaned and smell bad. Many re-wear dirty clothing, even if soiled- they don't wash their face except incidentally while showering. They don't live by a budget and don't pay their bills ontime (some don't pay them at all)

Of course most get better overtime and learn from their mistakes but many with autism don't have that luxery--you guys have to be perfect home makers before you even move out!

The one thing my friends did right was not get a diagnosis (of autism) that would replace their right to privacy with forced independent living training.

I'd be frightened to have some psychologist judging my face washing ability, especially at the age of 14-15...many autistics I know are much cleaner and more neat and tidy, in general, than I am...

Edited by author 04-16-2005 06:23 PM
I agree with Alex that getting stuff on your face is terrible. Washing my face is high up on the list of the many self-help skills I could not learn at the "appropriate" time, or ever do in the "appropriate" way. I always hated it and am still very rudimentary. When I was fourteen or fifteen I could put water on my face but left out my forehead completely (this is in a report about me somewhere; psychologist was clearly aghast).

Re food, I eat non-messy stuff. I'm a vegetarian. I eat crackers (rye crisp stuff), yogurt (out of the container, and yes I use my spoon--I have one soup spoon). I am eating less yogurt now due to my tendency to fall asleep sitting up (not good with a container of yogurt). I eat soy stuff in whatever disguise (e.g., veggie weiners--eat with fingers from package, either standing at counter or from my lap). Cherry tomatoes. Cabbage. Kiwis (I do not peel them and eat them whole, like an apple). Clementines. I do not wash produce (one step too many; I suspect I have great anti-bodies to all the crap I've eaten on dirty fruit and vegetables). Sometimes cheese. I used to put stuff together but I don't really any more. Always very rudimentary. I eat cereal with my fingers out of the box (sometimes with the spoon). Drink V-8 out of the bottle standing at the fridge. Use old, old kitchen knife to bash the V-8 bottle lid when I can't open it...

I read when I'm eating also. One of the ways I slowly habituated myself to eating with people again was to bring a book to the table. This is rude, but I would try to pay attention to other people while holding my book open but not directly looking at it. But if I felt at risk of running out of the room, I would have the book to look at and would stay put. Otherwise I have to drink to at all stand being social over a meal. Never understood why the meal seems to be the apex of human social achievement.

I bought my house fully furnished in 1989, including a fine large table in my kitchen. When I am home, I sit at that table, or a small portable table in my living room, if I am eating food on a plate or in a bowl, or drinking from a mug, with a saucer. Otherwise I eat from the packet etc. I love looking at the patterns of the wood on the table.

I have my food and drink routines, rules and systems, which means that what I eat and drink are basically variations on the same three themes. These routines etc also extend to the utensils I use. I usually read when I am eating. My cooking extends to heating soup or putting convenience food in the oven. I don't do 'proper' cooking.

I buy fair trade food and drink as much as possible.

When I was a child I didn't like to eat 'en famille' but
wanted to eat and read at the same time. I was told to sit at the table and make conversation. When I was very interested in Native Americans and their culture and history, I wore my feathered headdress (I hope that is the right word) as much as possible, including at meals.

jypsy wrote:

"He ate with utensils very early - he didn't want to get his hands "dirty" (food on them) and was good at using them - he didn't want to get his face "dirty" (to hear me washing his face when he was a toddler you'de have thought I was brutally murdering the child, consequently he was very good at keeping his face clean if he could help it)."

Yeah, I didn't want to get my hands or face dirty either. I can remember one time being made fun of by my older sisters for having a milk mustache, so I figured out how to drink milk with getting it on my upper lip. I was disgusted at watching other kids taking a candy bar out of a wrapper to eat it, getting it all over their hands. Figured out a way to remove just the end of the wrapper, and slide the bar along as I ate. And I made my mother STOP trying to wash my face. She was too rough, and she got soap all over my eyes, and nose and mouth. I hated Ivory soap, but that was all she ever bought.

Michelle wrote:

"I don't cook. I eat hot food maybe once or twice a year."
(That may not be a exact quote, the text isn't available here to cut and paste.)

Just out of curiosity here, and you certainly don't have to answer, but I wonder just what do you eat then? Most veggies are better tasting and easier to eat after being steamed, or something.

I never made Alex eat with us and he doesn't except when we go to my mom's (maybe once or twice a year) and sometimes on special occasions on his initiation (Christmas dinner, BBQ when family visits...) He eats lunch in the school cafeteria 5 days a week. He was much more comfortable at the Roadrunner banquet than I was (and much more willing, even keen, to try the fancy food put in front of him than if I had served it). I don't like eating with people. I do at my mothers...... At home Alex eats in his room and he *always* brings his dishes back to the kitchen when he's done with them.

He ate with utensils very early - he didn't want to get his hands "dirty" (food on them) and was good at using them - he didn't want to get his face "dirty" (to hear me washing his face when he was a toddler you'de have thought I was brutally murdering the child, consequently he was very good at keeping his face clean if he could help it). There is a very early (age 3ish) Dx report on his page that reports he eats with "knife and fork" but it should read "spoon and fork".

About a year ago I bought a bunch of chopsticks - I wanted to slow down my eating and figured this would be a good way. Alex was quite interested in them and wanted to know how to use them (as did my other kids). I gave them a demo. Since that day Alex has consistently eaten all his rice, and only rice, with chopsticks. Because he eats in his room alone I don't see him but I also don't clean up rice off the floor. Funny that that is all he eats with them - I eat about 3/4 of my food with them but probably not rice!

I also realized just last week that although I'm left handed, and eat (with knife & fork) left handed, I use chopsticks in my right hand. Alex is right handed and he holds them in his right hand too (leading me to believe I'm the one breaking the "rule" here). Any left handed chopstick users out there? Do you hold chopsticks in your left hand or right?

Aside from where, how and with what, could go on forever about the "food rules" in this family....

Re: Table Manners

I remember when an autistic guy I knew was having a love interest over for dinner...his so-called lack of social skills evaporated and my friend ate with more grace than the queen herself! Ha! The real joke is that he asked her if she cared about table manners she said no so he stopped the charade for the next get together.

Michelle check this guy out, he's brilliant!
http://www.jamesmw.com/

If I had a nickel for every time my mom tried to get my autistic sister to eat with us as she snatched her plate and headed down the hall....well, I'd have a lot of nickels.

I never eat at a table (but I do demonstrate good 'lap manners'

I guess Liz has sobered up and forgot all about us!

Edited by author 04-14-2005 08:16 PM
Re /m211, I can name 20 autistic people who I've met and know personally, and another 20 who I've met briefly or have come to know online. The artist Paul Sadgrove is among those who I wish I could meet again.

If I discard as 'fantasy' those who I've met online, I would have to include Liz. Which would make this reply...paradoxical?

Table manners?

In order to be able to tolerate sitting at a table with other people, I have to drink (beer, usually), and I don't even try very often.

I have trouble with utensils. I eat with my fingers. I don't have a table (anywhere, in my apartment). Which I guess makes "table manners" inapplicable... I don't cook. I eat hot food once or twice a year. I mostly don't want anyone around when I eat. So what?

One of the most marked characteristic of autism is that it produces this extremely wide range of abilities in each person, if you are judging by typical standards (you can reverse this persepective, as Dr Mottron does in his book). The automatic disbelief that this can be so is a stellar example of irrational prejudices at work in the autism community.

This specific irrational prejudice works every which way, from "my non-verbal child is low-functioning" to "any autistic person who can write must have such an easy wonderful priviliged life".

Last time Liz was here as MUMCAT she said her child had been taken away from her. Can you tell us what has happened since then Liz?

Liz wrote: 'unlike any of you here- I personally KNOW many autistic people'

Do the autistic people you know share your views I wonder? I in fact do know a number of autistic people- my sister is autistic, she knows some autistic people that I know through her, I have worked with and continue to work with lots of autistic people- I stay in touch with some of those people I used to work with and consider them true friends. On top of that I have met autistic people like Michelle online that I consider friends as well.

We always seem to get bogged down in the high functioning vs. low functioning thing- I still get bogged down in it myself as my NT bias about social differences can't be instantly erased but I work hard to ensure I don't prejudge people and accept them for who they are. Some of the highest functioning autistics I know are considered low functioning by many.

How do you judge the autistic people that you know Liz? I know a guy with aspergers who drools alot, is incontinent on occasion, self-injures, never gives eye contact and poo poos table manners. He needs community support, suffers from depression and fixates on one topic for as long as he wants/needs to. He also has a brilliant memory and a superior grasp of ethical issues. If I judge my friend on his table manners he is low functioning. If I judge him on his philosophical understanding of the world he is high functioning.

If I don't judge him at all then we have a chance at maintaining a friendship and I know that as soon as I try to correct one of his 'inappropriate behaviors' I will lose his friendship (as he would lose mine for the same thing)

 So if you want to get anywhere in understanding autism then stop judging and start listening- some of the best human resources are right under your nose and for some reason you want to sabotage your opportunity to further understand autism and your child.

Edited by author 04-13-2005 05:40 AM
Michelle wrote:

"My wild guess would be that clay baths would be for some sort of detoxification, on the assumption that autistics are poisoned by something or other."

It was something I ran across the one time I looked at Liz's website, celebrateautismtoday. I gathered that it was supposedly for detoxification, but really somebody's "get rich quick" scheme.

"How about defining "real autism" as whatever is suffered by those on the spectrum who agree with, e.g., the ABA parents, or the DAN parents, or combinations of these and others wanting to wipe out autism. The rest of us are autistics."

YES! We are the "autistic community" and no one else can lay claim to that. The "autism community" should really be called the "anti-autism community".

Edited by author 04-12-2005 08:16 PM
My wild guess would be that clay baths would be for some sort of detoxification, on the assumption that autistics are poisoned by something or other.

Sensory stuff sort of comes into the DSMIV in the third domain (restricted interests/repetitive behaviours); or anyway perceptual differences do, in the sense of some visible behaviours that may result from differences in perception (e.g. "persistent preoccupation with parts of objects").

How about defining "real autism" as whatever is suffered by those on the spectrum who agree with, e.g., the ABA parents, or the DAN parents, or combinations of these and others wanting to wipe out autism. The rest of us are autistics.

Aidan Keller wrote, "Diagnosis is getting better, as can be seen in the increase in the amount of diagnosis. True, many autistics are still misdiagnosed, but increasing knowledge of what autism is, beyond the cryptic DSM definitions (which don't mention things like sensory accuity at all) is helping clinicians recognize autism when they see it."


Something I'm curious about here is also, if all the autistics I know are misdiagnosed, then what are they? Do they have only "mental retardation"? "Childhood schizophrenia" (vaguest diagnostic term in the century)? Because we sure as hell have something, and somehow that "something" happens to fit descriptions dating back to Kanner and Asperger themselves, right down to details that have been left out in current diagnostic criteria.
Somehow the only thing that looks like this, that creates all these differences that are visible right from the start or near the start, is currently referred to as autism. Trying to exclude some people from "real autistics" for political reasons is a problem.

Diagnosis is getting better, as can be seen in the increase in the amount of diagnosis. True, many autistics are still misdiagnosed, but increasing knowledge of what autism is, beyond the cryptic DSM definitions (which don't mention things like sensory accuity at all) is helping clinicians recognize autism when they see it.

The only bad part about this is that people go from being mistaken to "passing." Being defined as non-human, both by the Canadian courts and by Ivar Lovaas, a "passing" autistic could be considered guilty of impersonating a citizen.

I'll make sure to stay out of Canada until I'm sure that I will be recognized as a human being, rather than just something that looks like one.

Fact is people are misdiagnosing autism globally so nobody can be blamed for thinking just about anything can be interpreted as 'autism' - you need to know and see a lot - and live with people autistic to really know what autism is. The internet has a lot to answer for as have unscrupulous and misguided professionals whom really ought to know better - hopefully some new research will speak for itself in the near future.
>
< replied-to message removed by QT >

Clay baths sound sort of fun, actually.

Is there an actual point behind them?

Oh yeah... all the other autistic people I was locked up with and went to school with and continue to know in real life supposedly don't exist now. Hmm. Now who is it who can't tell fantasy from reality again?

I also find it interesting that an autistic person is again measuring how "really autistic" a person is by things that are not actually all that common in autistic people. For instance, since many autistic people are socially isolated, how many are going to know oodles of autistics (or oodles of anyone) in real life unless they (like me) end up locked up with them or receiving services from the same places? It doesn't make any sense at all. No more sense than saying that the "real autistics" can and should be able to easily take the perspective of non-autistic parents.

Liz, I really don't get why you're wasting your time screaming stuff at us that we all know to be false. You could argue with our (varied) views, but instead you seem to prefer making outlandish statements that would require clairvoyance on your part to actually know. It's like if I claimed to know your hair color: I don't, because I've never met you. So how can you possibly claim to know all these things about us?

unlike any of you here- I personally KNOW many autistic people. You are not representative of people with autism at all. You can kid yourselves but people who can tell fantasy from reality- no.
< replied-to message removed by QT >

Holy crap I just read this Liz person's posts. Would ABA give me social skills as graceful as hers I wonder?

So if you are still hanging around Liz then let me introduce myself- My name is Mike and I am not autistic. Michelle is obviously autistic but she is a grown up and not a child--get it? Autistic kids grow up and they get better and better at dealing with the illogical social deficits of NT's like you and me.

I get really pissed off at postings like yours--do you lack Theory of Mind and empathy skills? Are you not capable of treating people that are different than you with respect? Your kid is doomed because of you and not because of autism.

Clay wrote "I note that in message #197, she gave her website address, just slightly wrong - celeBERATEautismtoday.org"

I still have one of her posters on my wall, too, as well as a couple other items with the C.A.T. logo in my house. It seems exceedingly odd to me that someone who claims to "celebrate autism" and designs such cool posters on the topic, also has such vitriol for the majority of other anti-cure autistics.

In /m207 Clay wrote: "This Liz, isn't she the (in)famous Mumcat, who has used many aliases on several Lists and alienated autistics far and wide?"
Yes.

Edited by author 04-09-2005 01:21 AM
This Liz, isn't she the (in)famous Mumcat, who has used many aliases on several Lists and alienated autistics far and wide? I note that in message #197, she gave her website address, just slightly wrong, but also appropriate - celeBERATEautismtoday.org

One would think that after spending 8 years on ABA, and wasting all that money on chelation, clay baths and whatever, one might come to the realization that one's suppositions have all been wrong.

Forgot to add, what is said here represents the mess that autistic people are left in in general. When we need assistance with something, if we ask, we're supposedly not autistic enough to need it, if we're blunt or communicate in other decidedly autistic ways, we're not NT-polite enough to need it, it's just another way of saying "You folks are bad and deserve nothing." Just with a lot of fancy Rube Goldberg machinery all around the edges to make it possible to follow it in circles, but that's what's at the middle of the circle. We're just bad, whether because we're too autistic or because we're not autistic enough, whichever one of those is convenient to whoever is talking to us, sometimes both at once if they want to tie our minds in knots.

Looking at a lot of the stuff that was just said here rationally, I can't see it making much sense at all. Liz is telling a bunch of autistic people to do things that many of us are incapable of (relate to NTs in an NT way), and using that incapability of relating in an NT way as proof we're not autistic and don't and haven't experienced such-and-such? It sounds like the usual sort of mind-trap, and I would prefer to sidestep it. Although it seemed more like an outlet of emotion than anything.

Edited by author 04-07-2005 03:33 PM
Maybe this is way off topic, but I can't help noting the parallel to Weekes' "Three Little Girls in Blue". For some reason Google comes up empty, so here's the link [Warning: adult content]: http://www.webspawner.com/users/quackjojo/index.html

Edited by author 04-07-2005 09:24 AM
Thanks to Lucas and Philip for trying very hard, very sincerely, and very honestly to be helpful.

I suggest that seeing as you hate everyone here, Liz, that you should seek whatever it is you seek elsewhere. This is a public board, etc, and mostly people understand that and attempt to be both considerate and helpful in providing information of interest to those who might have cause to read the information on this website, and/or in genuinely seeking information. You have no use for us. There is no point in you staying here and telling us how stupid and rotten we are. Your opinions have been noted, as has your certainty that we can't help you in any way. Please get the help you need from people for whom you have respect, as I wrote before. You have decided that we have nothing of use or of interest to you here.

I am hurt and upset by Liz's behaviour here. Lucas, Michelle and I were courteous and helpful to her, and she repaid us by abuse and insults.

However, we must never inadvertently give the false impression that we do not care about autistic children and the problems they may cause their parents.

Mantras it is then.

FUCKWIT psycho's you aren't autistic! BOOOOO Go Ivar! Cure the world of bitches like this - I can't afford to get drunk enough to be able to face this type of cuntery every day any more- you lost - I will be sober in the morning- you will be lonely - AMEN (yeah Michelle- I fucken hate your guts) < replied-to message removed by QT >

if i ever had a hand in my childs behaviour that is not acceptable - I would want a slap- however - you are too naive too get it mate. I have, as Michelle pointed out, done it all. You are all losing a battle that started out with good intyentions- now you are all on ego trips and do not care a bloody toss about any suffering anywhere- this is your stupid parents against you- oh stop pretending to be autistic- you are no such thing. Go read. And get me out of here- your collective ignorance is an abortion of thought to me- abominable- go back up your arses and in-fight- leave the rest of the world aloe (like you aint already LOL)
< replied-to message removed by QT >

Lenny Schafer is fond of diagnosing people over the internet too.

You're infering something about my mom that you can't actually possibly know, many parents often tell their children to sit still and there's no problem with it.

You are simply avoiding the fact that you may have a hand in the difficulties your child faces. The ABA parents are also warm and caring people, this does not make them immune to mistakes.

I'll also remind you Liz that Neurotypical people who are 'good at social skills' have tried to reason with such parents and have been met with the same thing as us.

And a judge doesn't accept the 'we love our children' arguement. They will lose because ABA is not a medical treatment, let alone a 'Medically Neccessary' one.

For them to win they have to actually justify their claims with deductive evidence, they have little and so do you.

They will not win because they can not hold themselves above name-calling, deceit, disparagement, avoidance and rhetoric. It's the only substance to their arguements.

Will you join the discussion or just shout mantras?

Sorry but your mom sounds like a bitch and you probably suffer detachment disorder. I'm a warm and caring, loving mum and so was mine.
Meanwhile you already know the parents are going to appeal judgments made against IBI/ABA programs. They will win because you won't understand that these parents LOVE thier children, are trying their damnest to get what they think is good for them and all they can see is a bunch of academic chilly, pedantic and dogmatic sounding people whom in NO WAY resemble their children.
You have to think 'NT' and be good at social skills to get them to at least try to hear you out. All your efforts are shamefully and sadly completely wasted otherwise.

Liz, parent and 'on the spectrum' www.celeberateautismtoday.org
>
< replied-to message removed by QT >

Another reason may the completel opposite: I smeared poo because my mom shouted at me if I moved when she told me to stay where I was. If I needed the toilet, I wasn't allowed to move, so I would go there and then.

I hated the feel of it, I hate feeling sticky, sweating or anything like that. So I would take it out of my pants and throw it away, then I wanted to wipe my hands clean.

Edited by author 04-05-2005 09:46 AM
Liz, you may find these articles on toilet training and autism - http://www.neurodiversity.com/toilet_training useful.

Hi Liz,

Crapping all over the walls is not an autistic secret.

Your son may smear his crap over your walls because he likes the feel of it, and/or he wants to cover the walls. Maybe you could encourage him to use washable paint or some easily removable material.

He may be fascinated by what comes out of his body. When I have had a crap I find interesting the different sizes and shapes of what I have produced, and how it has arranged itself in the toilet bowl. There is something wonderful in that I crap almost every day.

Maybe an online and/or offline support group for parents of autistic children would be helpful to you.

I wish you and your son well.

"Sadly you just don't get it that you don't represent ME as an autistic or my son. Not with your belligerance of attitude and ignorance of genuine suffering in the world of Autism."

This is rhetorical, you don't actually give any indication of what you know about us. You can represent yourself and your son but if you can't be accurate you will bring trouble down on others. Why are the Autism Societies speaking for me? I can speak for myself, but their arugement for why I shouldn't be able to speak for myself is that because the Autism COmmunity is a collective, I will by default be speaking for others aswell. So it's best I don't have a voice.

"You're not even looking at why a parent might opt for ABA/IBI in the first place."

You haven't explained how that#s relevent and you have once again made an assumption about what is in someone else's head.

"Unfortunately you will never have the support you actually deserve if you continue in this vein."

We already know that if we don't come up with catchy and demeaning phrases and evasive rhetoric, we won't stand a chance against people who hate us.

"I hope that you are fortunate enough to have a mute, crap-smearing child of your own so you are able to address the issues I have put to you.
As it is, you cannot even imagine how it is."

Now you speak as if Michelle and the rest of us never were such children and have never seen such children. All your statements are emotive and superflous.

"Constructive ideas might be good at this juncture rather than tantrums, insults and useless asides."

You came on this board doing just that.

Now can you tell me why I must go through my life with therapies, interventions and invasion of my person so that I have to become acceptable?

Then I will answer.

"what is absurd is that non-verbal children with severe learning impairments, in diapers/nappies for life and unable to communicate AT ALL can be 'categorised' as being on the same 'spectrum' you are. I don't buy it and neither does the public and they never will."

I was smearing on the walls right up until my teenage years, one of the problems the FEAT crowd has is that it doesn't seem to realise it is comparing children to adults without knowing our own history. You do the same thing.

I know why I smeared on the walls, other Autistics who smeared on the walls for different reasons will tell their reasons. Parents have the oppotunity to ask us these things but don't.

"Nobody responded to my 'crapping all over the walls-is this an autistic secret' either. Is it?"

Partly because you are rude to people who have not been rude to you first. We're also quite sensitive to nuances of langauge, we have to be to understand people, I certainly couldn't work out if your question was rhetorical or not because you provide your own answers.

"Do you crap and smear or is it just the retarded kids - and how come you are not retarded and some children are?"

False premise correction #1: Autism does not equal retardation, retardation does not equal Autism, very few Autistics are actually retarded. Going purely by observing behaviour causes these mistakes.

"And YES I was brainwashed- don't tell me what I went through . I have suffered enough and I don't like ABA/IBA or Lovaas ANY more than you do."

The problem was you didn't explain how that was relevent at all. It seems as if you used a sooth-saying trick where you disassociate yourself from a common enemy so people would find it difficult to respond to you. This is also done by those who are pro-life asserting that they are not religious. But it only has superficial effects on a discussion.

"The question is; how do you educate ordinary folk with average intelligence that it's a good idea to leave their mute kids to never do anything except that what they wish to do (including speading crap on walls presumably)?"

And when did Michelle Dawson or anyone else say that was what we wanted? The only people who have said that we say that are the ABA crowd and you've been 'brainwashed' again because you actually believe it.

"And how to convince them *other* teaching methods/interventions are better without creating wars?"

We don't. Other therapies often have the same errors because they begin with unproven premises about Autism. We can't aruge with people who don't listen to what we say to begin with, but instead make up what we say and then attack their hypothetical version of our words.

"You annoy me by not even beginning to try and see this from a parental perspective- a parent going for ABA is going to be influenced by parents already 'indoctrinated' as I was. "

Some of us are Autistic parents of Autistic children and Neurotypical parents of Autistic children. I personally don't have any sympathy for those who took a one-sided view and stuck with it, then were complacent in defamation, abuse and emotive bargaining.

"Read Cibra. "

I don't think there's anyone here that hasn't. But CIBRA mostly misses the point by concentrating on the use of adversive which are no longer widely used, that isn't the ethical issue that Michelle Dawson has challenged.

"You won't convince me that you know what it's like to be mine or my friends' mute children; exceptionally vulnerable and open to physical and sexual abuse- as parents we'd do bloody *anything* to prevent abuse and enable out children to talk and or communicate effectively so they can raise an alarm."

You're making assumptions about us, you don't know when any of us started talking. A consistent scenario though is that Autistic children DO communicate what is the matter and what they want but are ignored because they are doing it 'wrong'.

"Most mute kids (ASD) can't even scream or say 'ouch' when in pain. This isn't some game to be won but *innocent lives* we are referring to."

Those lives include ours, our future welfare is dependent on how Autistics are regarded in society. At the moment we have no rights unless we are given 'medically neccessary' treatment to become 'indistinguishable from our peers'. There are social workers and civil servants that research Autism and will at some point come across the hate speak going around about us, they will make decisions about us based on what they read and hear. I think it's about time Autistics had some input into what the public reads and hears about Autism.

"I'm not beating myself for trying ABA, despite the fact *it didn't work despite 8 years and an ABA school and 5 different 'top' consultants*.
It IS a cult. That's my opinion, but an educated one."

Why didn't it 'work'? What would you class as success?

Sadly you just don't get it that you don't represent ME as an autistic or my son. Not with your belligerance of attitude and ignorance of genuine suffering in the world of Autism.

You're not even looking at why a parent might opt for ABA/IBI in the first place.

Unfortunately you will never have the support you actually deserve if you continue in this vein.

 I hope that you are fortunate enough to have a mute, crap-smearing child of your own so you are able to address the issues I have put to you.
As it is, you cannot even imagine how it is.

Constructive ideas might be good at this juncture rather than tantrums, insults and useless asides.


>
< replied-to message removed by QT >

It is rarely useful or productive to demand help and solutions from a person for whose work and character you have no respect, and in fact find reprehensible. Finding a person or group whose work and character/philosophy you can respect would be more productive.

.. at best that was a trite and petulant statement with no regard for any suffering other than her own.

>
< replied-to message removed by QT >

I apologize for responding in the first place. I have nothing to say to someone who already knows everything. Anyone is free to disagree with me, to go to court, etc. I would usually argue against anyone claiming there is *any* autistic who *cannot* communicate, etc, but I cannot argue or discuss with a person who knows everything and ascribes to me positions I have never taken.

..what is absurd is that non-verbal children with severe learning impairments, in diapers/nappies for life and unable to communicate AT ALL can be 'categorised' as being on the same 'spectrum' you are. I don't buy it and neither does the public and they never will.

Nobody responded to my 'crapping all over the walls-is this an autistic secret' either. Is it?
Do you crap and smear or is it just the retarded kids - and how come you are not retarded and some children are? And YES I was brainwashed- don't tell me what I went through . I have suffered enough and I don't like ABA/IBA or Lovaas ANY more than you do.

The question is; how do you educate ordinary folk with average intelligence that it's a good idea to leave their mute kids to never do anything except that what they wish to do (including speading crap on walls presumably)?
And how to convince them *other* teaching methods/interventions are better without creating wars? You annoy me by not even beginning to try and see this from a parental perspective- a parent going for ABA is going to be influenced by parents already 'indoctrinated' as I was. Read Cibra. You won't convince me that you know what it's like to be mine or my friends' mute children; exceptionally vulnerable and open to physical and sexual abuse- as parents we'd do bloody *anything* to prevent abuse and enable out children to talk and or communicate effectively so they can raise an alarm. Most mute kids (ASD) can't even scream or say 'ouch' when in pain. This isn't some game to be won but *innocent lives* we are referring to.
I'm not beating myself for trying ABA, despite the fact *it didn't work despite 8 years and an ABA school and 5 different 'top' consultants*.
It IS a cult. That's my opinion, but an educated one.

< replied-to message removed by QT >

Cross-posted from the TMoB board:

For the Globe and Mail article about Wynberg, see http://www.theglobeandmail.com/servlet/sto...4/BNStory/National/

This does convey the extremely biased nature of a decision resulting, as usual, from both "sides" portraying autistics in entirely pejorative ways, and, also as usual, from both sides supplying *only* "expert" witnesses who *support* ABA/IBI.

Everyone seems to agree that we are inherently incapable of learning, or indeed of living, without ABA/IBI.

I find it extraordinary that we again have in Canadian jurisprudence the inhumanity of untreated autistics: we are totally written off. Contemplating the possiblity that we may have rights as autistics, in the wake of this decision, would seem utterly absurd.

Edited by author 04-03-2005 07:46 PM
Re /m184, from "An Autistic Victory":

"ABA parents have railed impressively against positions that I have never taken, against statements I have never made, and against actions I have never taken. This has also happened to many other autistic activists who do not agree with the ABA parents. We are still waiting to be genuinely challenged. Instead we have been defamed and disrespected in ways which are no more productive to argue against than any other form of bigotry."

I don't believe the concepts of "blame" and "brain-washing" are useful to any discussion of this issue. The only "enemies" described in "An Autistic Victory" were so named by the ABA parents and/or by Canadian governments, national and provincial.

It's not the parents' that are the enemies, rather the ABA providers whom are guilty of brain-washing them. I know because I was one. I wish you people would quit blaming parents for what is a neurological and biological diffeence- the parents only want what's best for their children and to protect them from abuse- they don't go into ABA/IBI/Lovaass thinking 'oh great, let's go and abuse our kid' get real please- it would be far wiser to educate rather than alienate parents.
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< replied-to message removed by QT >

Edited by author 04-02-2005 06:19 AM
The Wynberg decision came out early, and indeed the parents won. Or I should say, autistics lost. I'm just taking a break from reading this (it really is huge; it's here http://www.essac.com/wynberg.pdf ) .

Edited by author 04-01-2005 10:01 PM
Hi Philip,

You're welcome.

I found the reaction to the Bettencourt decision, as well as the decision itself, extraordinary in what they imply. I suppose I'll write about this some day also.

OHIP is the Ontario Health Insurance Plan.

The Wynberg decision (mentioned in the article) is being handed down on Monday (April 4). It is apparently a huge decision (200 pages). I'm not looking forward to it. I see no way that the parents can lose, and they have argued in the same offensive and harmful ways (the pain, the sorrow of the existence of an autistic child; doom for all the ABA-deprived) as the parents in Auton. The judge has shown sympathy to the parents, the government has been incompetent in defending its (indefensible) position, etc. What a mess.

Edited by author 04-01-2005 02:59 AM
Hi Michelle,

Thank you very much for "An Autistic Victory The True Meaning of the Auton Decision." I downloaded it from a computer in my local library and read it at home last night.

The SCC Auton decision is an historic victory which can never be taken away from us, and its remembrance will always give us inspiration and courage.

Thank you also for mentioning me in your acknowledgements.

I also downloaded and read the Bettencourt decision in the Ontario Superior Court of Justice:- http://www.canlii.org/on/cas/onsc/2005/2005onsc10034.html.
in which Justice Ferrier's decision was made "notwithstanding Auton" in favour of the plaintiffs on educational, rather than medical grounds, for their receiving funding for IBI.

I assume that OHIP stands for Ontario Health Something Something.

Thanks also for the information about the autistic children at the SCC. Like you I find it incredible that their parents would bring them into the courtroom to hear tat they are doomed without ABA/IBI.

I was a little upset that "Ivar Lovaas" returned very few pages when coupled with the terms "sadistic" "sadist" or "sadism." For a guy so absolutely and utterly evil, he seems to have a lot of respect. It's shocking. Sort of like seeing Mengela lionized.

Michelle,

don't tell anyone, but I got chills from reading your essay: An Autistic Victory - The True Meaning of the Auton Decision, and I still have tears in my eyes.

Thank you. It's obviously took an incredible amount of work to write it and I can see that it forced you to go back over painful experiences, but I hope you will be able to enjoy the triumph, at least a little, whenever you think of Auton.

Camille

with the greatest of respect; I have an autisitc child that poos in the bath and spreads it all over the walls several times a day - is this some great autistic joke? If it is, please let me in on it as I am also supposed to be autistic but do not crap all over the place to prove it.
< replied-to message removed by QT >

Philip, I forgot to mention that I'm pretty sure at least one autistic child was brought into the SCC hearing, because I heard a child make (very little) noise early in the hearing, and then he was taken away. I saw children outside, two I think from the same family, though hard to tell, people were milling around and mostly I was staring at the building or at the study I brought in order to have something in my hands. Those were the only children I saw.

I find it incredible that parents would bring autistic children into that court room (ASC claims this happened), to hear that they themselves are doomed, less than half living, belong in institutions, etc, as they were described by the parent side. I am at a complete loss to understand that kind of behaviour.

Hi Philip,

I completely share your views of Ms--she is a woman--Whitney's brief to the Senate. Her actual testimony is somewhat more offensive. This is the same Senate committee in which the statement (by David Vardy) re autism being worse than cancer--because autistics have a normal lifespan--was made, and was applauded.

Ms Whitney's brief uses some of the information/approaches used by Sabrina Freeman, in Dr Freeman's letter/essay about why Auton is the worst decision in the history of whatever...

The Senate committee was completely welcoming of Ms Whitney's views, and thanked and praised her elaborately. Also, the "autism community" is absolutely delighted with Ms Whitney's "facts" and position. She accurately represents their standards.

Edited by author 03-21-2005 12:54 PM
Continuation of my previous message.

In his brief to the Senate Committee, Norrah Whitney protests against autistic children being treated "as second-class citizens", and compares IBI treatment for autistic children not being included in Medicare, as a denial of the right to equal treatment under section 15(1) of the Charter of Rights and Freedoms, to the imprisonment of Japanese Canadians in internment camps in World War 2. Those Canadians were forced into camps because the government regarded them as a threat to national security. Similarly, using Whitney's arguments, autistic children are a threat to the economic security and well-being of the nation if they remain autistic by not receiving IBI.

However the real analogy is with the forced assimilation of indigenous peoples to mainstream Canadian life and culture.

It seems that autistic Canadians can only attain equality with their fellow citizens by becoming non-autistic; only then can autistic children "be proud to be an equal part of this great nation". The Senate has "the power to save these lives."

I didn't state in my previous message that Justice Allan's
judgement in the Auton case was in the Supreme Court of British Columbia in the year 2000.

The link to the full text of Mr. Whitney's brief is http://www.canadaautism.com/Portals/1/FEAT...h%20in%20Canada.pdf. Sorry about the previous wrong link.

Here are extracts from the brief submitted to The Standing Senate Commitee On Social Affairs, Science and Technology at a public hearing in Toronto on 15th February 2005, by Norrah Whitney, Executive Director of FEAT of Ontario. The full text is on http://www.canadaautism.com/Portals/1/FEAT...h%20id%20Canada.pdf

"There is an "epidemic of this relentless illness," which "has catastrophic consequences to innocent children."
Autism is "one of the most serious neurological illness known to humankind".

He quoted from the uninformed opinion of Justice Allan in her judgement in the Auton case that "Without effective treatment, autism is a lifelong affliction that results in the placement of over 90% of untreated children in group homes or other residential facilities. Only 1 in 64 children will show improvement without treatment." Repeating these false statements about autistic people before a Senate Committee gives them an unwarranted credibility.

In order "to seek equal access to effective treatment for their core health need, children with autism have been forced into courtrooms all across this country." I don't know if this is literally true, whether the parents or guardians of autistic children dragged their offspring into courtrooms all acroos Canada. When you went to the Supreme Court, Michelle did you see any children in the courtroom?

He quoted from section 15.1 of the Canadian Charter of Rights and Freedoms, and from a speech made by Paul Martin in the House of Commons on 5th October 2004, in which he said that "we as a nation of minorities must never allow these fundamental rights to be compromised if we are protect our national character and individual freedom." But autistics are one of those minorities who have the fundamental right to be themselves.

According to Whitney, the decision by the Supreme Court in the Auton case meant that "the equality provisions of the Charter were effectively gutted." In other words equality for autistics is undergoing treatment to make them non-autistic.

He quoted from Senator Jim Munson who said that "Children who do not receive treatment often grow up to become wholly dependent on the state for support. This support is estimated at $2 million over the lifetime of the individual."

The rights of "every disabled people across the country...have been thorougly abrogated by the Auton jodgement." He describes this brief as "a strategy to turn Canada around so that - as a nation - we actually value, rather than simply tolerate, person with disabilities. I completely agree, and that autistic persons must be truly valued.

"Autism is at shocking epidemic levels."

Referring to the Supreme Court's decision in the Auton Case, he claimed that there are "twenty-two technical errors in the high court's ruling. FEAT of BC will make all those errors public soon." That I will be very interested to read.

Autism destroys, wastes a child's life.

This is an incredible concept using kind training, imagine having a school like that
http://www.judithpaton.com/
"Unlike most other music therapies, the painful frequencies are filtered out. This makes it a very kind therapy, unlike crude attempts to “desensitize” the person through noxious noise."

Edited by author 02-10-2005 02:06 AM
Where does the auditory and the brain development problem start and stop, they work together, don't they, wouldn't that be tragic if autism was more of an auditory problem which effected the brain development, if they had schools set up to learn about this, what is the point being in a achool designed for NT's, maybe the cure or closing the gap lies in the auditory processing brain connection, wouldn't that be tragic, the canada health act seems to encourage the segreation of people with mental disabilities, so wouidn't that be so tragic, if the auditory connection was missed cause of prejudice, especially if it was an auditory problem creating distress and stuff and the person can't learn cause they don't hear the words right. the next point why wouild the 2 billion mental health industry want a cure or a way to close the gap, this part of the problem seems to be always ignored, and the assumptions assumes the person is stupid or doesn't know what is appropriate and disruptive and it primarily a behaviour emotional problem even when hearing is a primary way of learning in school, so it would be tragic and really stupid. Just like people starving while throwing food away, just as stupid and tragic.

you know I wish, if we could get a school, where we were respected for who we were, designed for what we need, learn about who are, and get into the possibilities of the savant skills, go from splintering skills to being the best we can be without nt snobs laughing at us, or refusing to communicate the way we need, or to put a note on the door when we take exams so nt's can walk by and laugh us. Where we can meet each other go on real dates and not just be used by nt's. Why spend money on ABA and instituationalizing people, why not spend it on real schools, as a choice, like a school for the deaf but as a choice or an alternative. Imagine what that would be like. We could actually learn at our pace free from silly integration problems, where half the people dont even want us there, why be somewhere where no one wants you.

Edited by author 02-09-2005 07:01 PM
"Soon after the treatment was cut off, they became disruptive, distressed and virtually incapable of being taught. They simply could not adapt to typically loose teaching formats and a reduction in the reinforcement they were used to."


I wonder how a person is expected to integrate if the "auditory processing" issue is not accomodated for in a system which is not designed to accomodate it, and I wonder if people who know how to accomodate for it like in ABA are effective in teaching and the reasons for why ABA works to some degree don't take into account the variation of auditory processing problem, coping techniques etc especially at recess and at lunch where the noise is at its worse. How can teacher teach a person effectively if they don't understand the auditory processing issue in context to learning and behaviour. Isn't that why a person needs the civil and education protection a physical disability requires. Tne right thing to do is not usually the easiest, but it sure would be easier if the right cause was defined.

Why is this question always avoided.

Even that discussion on that UK web site by the "pros" didn't even add txt or something so people with it could follow the discussion, this is what I hate. No accomodation you are automotically excluded that is the whole point of the 15.1 section rights.

Instead of freaking on a kid for screaming find out how the auditory processing is effecting them in the cafeteria, in the halls in the playground or the payback of the revolving door too high to offer a solution to give people accomodation so that integration is possible. Why don't they have rules in text etc, do things to welcome people instead of ignore the problem so they are excluded. That is what I hate.

Edited by author 02-09-2005 06:56 PM
I think what happens, is that ABA shows that these kids can learn with intense structure, stimulation, 1 to one, and reinforcement, perhaps the key lies in the assumptions

Maybe autism can't be cured, so a person has to know their strengths to create structure, positive reinforcement etc but the problem probably lies in the assumptions, I experienced this with my old doctor, he was such a typical NT snob the fact I was even his patient was a disruption, he didnt even try to have a real conversation to even get my BD right, he didnt even have to know that I didnt have a family doctor before he refused my yearly thing I need, our rights and sensitivies are trampelled on everyday, so that we get incredible amounts of negative reinforcement which I think slows down our response time to think instead of feeling or verses postive reinforcement which would quicken our response time, so, how can a person cue themselves when the learn to expect a personal boundary violation. That is I think part of the problem, and lack of parallell thinking, dfferent conceptual tools being used, but also you are dealing with people who have relatively good jobs because of this problem, they have dental plans, everything a person who is trying to live independantly doesn't have. I think technology is the answer, have a system that cues, that has communication in txt, and somehow avoid needing NT help. A person may need a structure a system etc to fit into the mainstream system, but that is not treatment, treatment implies a cure. Imagine if it is true, the main assumption, about a cure, leaves these kids with nothing once they have no structure that works for them, and perhaps that is the problem right there that the courts are ignoring, there may be no cure, it is like being blind in context of your structure needs to be adjusted in order to fit the mainstream, and that structure maybe technology can give us. The snobby NT root gives them them dental plan, leaves us in neglect once we try to live independantly which is just another joke for them. I think to win a case lies in the errors and neglect. The public authorities in NA have the power to blow up the whole planet by mistake while on vacation, this implies we need something to make our system fool proof.

I don't see why they don't have rules in text so a person can read them instead of hear them, integration implies knowing what the rules are, but if you used to one system and go into another system, you need a method of integration which is designed for people who have it, think how many kids have it, how can a socialist health care system begin to cope if it is expected to pay for 19th century concepts in 21 century dollars, isn't a clear process of integration a necessity, a person has to know what it is going on to not disrupt what is going on, this why integration is so difficult, there is not an effective transition process designed, people have already written the person off just by the label. What is the point.

This is cross-posted from the Misbehaviour board. Apologies to anyone who subscribes to both.

-----------------------------------------------------------

I sort of predicted that Auton would be the only victory for autistics in ABA cases in Canada. I predicted that Auton would be ignored by the lower courts and by human rights commissions and tribunals. So far I'm two for two. The first post-Auton decision was the Ontario Human Rights Tribunal decision to continue to hear the ABA over-age-six cases before them.

This is the second decision: http://www.theglobeandmail.com/servlet/Art...TISM02/National/Idx

These two paragraphs caught my attention (note, the Supreme Court did not use the word "unproven"). I think it's a trend.

"Whereas the Supreme Court referred to the treatment as an emerging, unproven technique, Judge Ferrier left no doubt that it is a recognized therapy that worked wonders for the McNabb and Bettencourt children." [...]

"Soon after the treatment was cut off, they became disruptive, distressed and virtually incapable of being taught. They simply could not adapt to typically loose teaching formats and a reduction in the reinforcement they were used to."

That's *some* treatment. Sure did work wonders.

I forgot to provide a link to the article below. Sorry. Here it is: http://www.theglobeandmail.com/servlet/Art...National/TopStories

Interesting, free article in the Globe and Mail about Chief Justice Beverley McLachlin of the Supreme Court of Canada. This is one of the Justices being accused of kowtowing to governments, cruelty, malice, corruption, and what-all, in the wake of the Auton decision. And of course, she wrote the Auton decision herself.

This is my favourite statement about the Chief Justice:

"If people describe her in superlatives, it is because they are wholly justified," Mr. Jamal said. "She is the law's Wayne Gretzky."

Edited by author 12-31-2004 11:20 PM
I think there are two parts of this problem, I found an ADHD site it isnt clear if it was written by the "helpers" it appears to me it probably was, it sounds to me the 1) feeling helplessness and having decisions made for you all the time without even being told about them and the constant crashing and clashing I think is probably similar to symptoms of pstd and then then 2) there are the typical symptoms of Autism / Adhd but they don't include feeling helpless. I think it is all about motivation which moulds the personality, I think the barriers are created by not only excluding and ommiting accomodations that would work, but that horrible protocol "if you dont do exactly as we say we wont help you at all" and I think these two situations and their symptoms are often blended into one by the "helpers" so the general public has grown to expect being helpless is one of the symptoms. I also think the threat to identity is very real especially when things are being written about a person that don't even be shown to the person or discussed with them to see if they are right and really reflect who the person really is, the threat to your autonomy is really real and that is probably how PSTD develops and stays hidden because the reasons for the crashing and clashing are don't even have to be understood as long as they are assumed to be part of the symptoms. Maybe it is not just about givng up your seat on the bus it is about giving up your soul in your heart?

It is actually well-known that a lot of Psychiatrists and Psychologists have personality disorders themselves. It can lead to them not seeing often obvious signs that their patients are sane.

Lets use Manchausen's Syndrome as an example, apparently on of the symptoms of Manchausens is denying you have it.

Nice.

I wonder how many people are being wrongly diagnosed in Canada as mentally ill who have traits of autism? Some of the symptoms for scitzophrenia, wearing a jacket in the summer, or looking and acting odd those kind of things have good reasons, even talking to yourself to understand things better, some people wear a jacket to protect the skin I mean they just assume what we feel is like them so we don't think on track, but if don't feel like them we are probably thinking on track. And the language thing. That does not mean a person is dillusional, a person might not be talking to an imaginary person but to themselves so they can process, I think that point is very important, that is what discredits the person, so you are expected to not wear a jacket cause they dont wear a jacket even though you are better off to wear a jacket, or not even talk to yourself even when it works for processing, if talking to yourself did work would they let you do it.? That is a good question eh? The barrier to socially aceptable or to be a faster processor? I bet people get dxed cuase of stupid things like that all the time, I want to know what protects us from that, cause medical insurance pays for trying to change a person.

I wonder if that is what the problem is that the behavioul training appears to work cause the kids can learn to immitate but they don't learn to process at the same speed, it is not learning to learn but learning to process quick enough to think parallel so you don't keep crashing and clashing at school in work at play etc etc, if the answer was free would they ignore it?? I don't know. I hope not. (ha)(ha)

I think it is the adversarial thinking that makes everything not work, I mean the parallel thinking is what people take for granted who take communincation and the auditory processing for granted. I don't know I bet the answer is in something much more simple than "they" make it appear.

I think this guy has some good clues but I think they are expensive too. It only seems what doesn't work is "free".



http://www.edwdebono.com/debono/lateral.htm
Library

EDWARD DE BONO

"On the Internet there is much misleading and erroneous information about 'lateral thinking' and 'parallel thinkingtm'. Some of the sites make false claims about me and my work. Because this is my official website I want to take this opportunity of clarifying matters regarding lateral thinking and parallel thinkingtm*.

LATERAL THINKING


I invented the term 'lateral thinking' in 1967. It was first written up in a book called "The Use of Lateral Thinking" (Jonathan Cape, London) - "New Think" (Basic Books, New York) - the two titles refer to the same book.

For many years now this has been acknowledged in the Oxford English Dictionary which is the final arbiter of the English Language.

There are several ways of defining lateral thinking, ranging from the technical to the illustrative.

1. "You cannot dig a hole in a different place by digging the same hole deeper"

This means that trying harder in the same direction may not be as useful as changing direction. Effort in the same direction (approach) will not necessarily succeed.

2. "Lateral Thinking is for changing concepts and perceptions"

With logic you start out with certain ingredients just as in playing chess you start out with given pieces. But what are those pieces? In most real life situations the pieces are not given, we just assume they are there. We assume certain perceptions, certain concepts and certain boundaries. Lateral thinking is concerned not with playing with the existing pieces but with seeking to change those very pieces. Lateral thinking is concerned with the perception part of thinking. This is where we organise the external world into the pieces we can then 'process'.

3. "The brain as a self-organising information system forms asymmetric patterns. In such systems there is a mathematical need for moving across patterns. The tools and processes of lateral thinking are designed to achieve such 'lateral' movement. The tools are based on an understanding of self-organising information systems."

This is a technical definition which depends on an understanding of self-organising information systems.

4. "In any self-organising system there is a need to escape from a local optimum in order to move towards a more global optimum. The techniques of lateral thinking, such as provocation, are designed to help that change."

This is another technical definition. It is important because it also defines the mathematical need for creativity.


PARALLEL THINKINGTM

I introduced this term in my book 'PARALLEL THINKING' (published by Viking, London and Penguin Books, London).

Parallel thinking is best understood in contrast to traditional argument or adversarial thinking.

With the traditional argument or adversarial thinking each side takes a different position and then seeks to attack the other side. Each side seeks to prove that the other side is wrong. This is the type of thinking established by the Greek Gang of Three (Socrates, Plato and Aristotle) two thousand four hundred years ago.

Adversarial thinking completely lacks a constructive, creative or design element. It was intended only to discover the 'truth' not to build anything.

With 'parallel thinking' both sides (or all parties0 are thinking in parallel in the same direction. There is co-operative and co-ordinated thinking. The direction itself can be changed in order to give a full scan of the situation. But at every moment each thinker is thinking in parallel with all the other thinkers. There does not have to be agreement. Statements or thoughts which are indeed contradictory are not argued out but laid down in parallel.In the final stage the way forward is 'designed' from the parallel thought that have been laid out.

A simple and practical way of carrying out 'parallel thinking' is the Six HatsTM method which is now being used widely around the world both because it speeds up thinking and also because it is so much more constructive then traditional argument thinking.

Information on Lateral Thinking and Six HatsTM methods are available on this website. Particulars of training courses are also given.

*Lists of current accredited independent trainers and current accredited corporate trainers who have been traine by me or my Master Trainers are provided in order that persons can verify that offers of training and courses in Lateral Thinking, Six HatsTM, Serious CreativityTM and DATTTM are being provided by appropriately qualified instructors. If there are doubts about the credentials of an instructor claiming to have been trained in my methods please enquire (see trainers)."

Edward de Bono

I went to the human rights for disablities at UN, there are basically 2 models the charity we will fix you type which is by nature discriminatory cause it ignores the principles of access and being known for true attributes,


I also found links about right sided brained people, which is about 8%, and it said a person who is wired like that has to almost translate into words that is what makes them slower, I can also how a person isn't able to filter out extra things as easily.

I think if a person knows what their strenghts are you have an advantage, these people never focus on the strength do they?

I also think it is not about money. I mean people don't have to be effective or acountable but they still dont work for free, as far as I can see they spend work hours deal with "emergencies" than maintenance which is much more expensive, and probably should be monitored very closely, like the judge said many of these programs aren't monitored and the wastage would probably shock most people.

Try telling people with 'mental health' issues (campaigners ) that autism is a mental health issue. They don't like it. Neither do I. Generally they will jump at you say 'it's genetic' (yay). But those are the 'mentally ill'. It's autism-ism -'they' are drugging people that they can't afford to spend time on- and they don't like 'things' they don't understand. Just like some people still hate black skin. Autism is a difference not a disease and the autistic people I have *met* have all been extremely nice, not any malicious streaks (as I have found many NT's now believe AS especially to create hateful people-AS has a bad press and I really do not like that) and I've found them to have much empathy and practical outlook, in other words, way nicer to be around than NT's. You won't get drugged as long as you can comply with the world, behave, act appropriately and prove you can care for yourself- above all they want you to be very afraid and complaint. Open door Prof.Lovaas. Opens door to extreme abuse and manipulation.
We're only at the dawn of time as far as the understanding of Autism is global. Blaming parents is still the big thing, and whilst that happens, everyone's doomed to the doctors' lurking suspicion that all is
somatisation. That is an ugly truth behind an awful lot of issues. Somatisation and autism isn't discussed a lot openly. A good way to see such discussion is to join university mailing lists if you can. That's where you find students saying things like 'hey, so Lovaas is like Pavlovs' dogs- aint that neat'?! ''Yeah, it's a great little cash job you can write off as as experience towards your degree'' type stuff. Lots of them still worship the discredited, and the useless (to some this is Skinner) . It's what many doctors' believe though (mother neglected baby/dropped baby on head when post-partum ' mother didn't bond' etc = Autism) . If you're happy and autisitic flap your hands- I know a LOT of happy people ASD. Ignorance reigns.
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Edited by author 12-26-2004 02:54 AM
I know it is not the same issue but it is the same system, how do you fight a system that forces people to take anti spychotic drugs, there was an article about how seniours who have dinmentia are being forced to take anti paychotic drugs, anti depressants, and it gooes on an on. What protects people from these programs? These workers are not accountable to anyone. In a less than an hour a stranger can destroy another person's mental health status>

Why dont we have social security lawyers like they do in the states. What protects people from government workers making decisions for people they dont even know that harm them. What do we have that protects us? That is a big whole in our system.

Edited by author 12-30-2004 05:21 PM
what happens is that if people don't communicate to a person who appears to be different then they are bound to be confused and frustrated which is the direction that the situation goes in. There two parts of the controls of the situation, two reactions is that some of the (helpers) 1) freak out if you try to define which causes frustration and perhaps even rage or 2)just ignore you and make decision without your input which causes frustration and perhaps even rage, and it is the frustration and rage which gets you in trouble, add the sexual frustration and there you go, a prisoner for life, is that the system?? and that might be how these theories are created that are believable about being hopeelss and useless, of course a person can't succeed if they are excluded it is almost like persecution, if they included us the way they are supposed to, I bet we would get better at things than them once we learned the task, and that is what scares them I think, I mean most of these "helpers" are getting good jobs they would never have otherwise, they dont have to be accountable, they basically can avoid science cause they dont have to include the "subject" or "ojbect" once we get beyond the barriers we appear to excell, I don't think underestimating the power the savant stereotype can have, I mean savants are superior in a very narrow field, thank God that public doesn't vote for what is done to us. The exclusion unless we are just like them is worse than the actual condition.

The full wording of the poll states that ABA/IBI is scientifically proven as an autism treatment; and that treating each autistic saves taxpayers $1-$2million. There are really two questions. The poll is posted by FEAT BC and ASBC (who are mostly one and the same), as well as on the petition site. I wonder if ASC is going to post it?

Look at how many people supported labotomies, shock treatments, eugenics lots of things. There isnt even a database to track people who have been disenfrinchised. There is a lot stuff going on that is probably news and hidden, and the publicity is out in the open people think it is news.

Edited by author 12-21-2004 11:05 PM
How many of those people know enough about this to even vote. Would anyone be honest and say I serve "wierd" people as inferiors all the time cause I believe that is my right as an NT and I have the right to vote to make them normal no matter what it takes.

In the Vancouver Sun for today:
        "Canadians Support Autism Treatment"
"An Ipsos-Reid survey conducted for Families of Early Autism Treatment of British Columbia finds that 89 per cent of Canadian families surveyed believe provincial health-care programs should cover the cost of intensive behavioural treatment which has been proven to effectively treat children who suffer from autism. BC was slightly behind the Canadian average at 85 per cent."
That is so depressing and discouraging. It is considerably higher support for intensive behavioural treatment than I expected.

"Referring to a recent report by Ontario's acting provincial auditor that exposed lax oversight and waste in the autism funding program, she also wondered if the Ontario government could have answered some of those burning questions if it had monitored and evaluated its own program."

Wastage, cruelty, freak out, funding. What I have experienced there is interaction on an individual level, people talk with their heads chopped off, cause silly problems, even exploit sexual frustration, everything is in place to keep as a negative. I think the solution is being hidden, news always is, it is only publicity that is out in the open.

Edited by author 12-18-2004 11:20 PM
i can relate to this part
"People with it are generally hyper-focused, very persistent workaholics who tend to see things from detail to global"

There is no structure at the beginning so you get so hyper.

That with the auditory problem.

Maybe though it is not problem as much as a difference in speed of thinking and processing.

We need to know more about it to be who are without freaking out cause of the over stimulation compounded with stupid people with good intentions paving the road to hell for us so they can get "funding" It is always about funding. I think that is the crises manufacturing part, as long as there is a crisis there is funding. For basic maintenance there appears to be no funding. Even though maintenance is everthing in health.

Edited by author 12-18-2004 08:15 PM
http://www.theglobeandmail.com/servlet/Art.../?query=Mary+Eberts

This link works :)
I will go back now to self stimulation


this is the excerpt
Ontario court dissects recent autism ruling
 
Supreme Court decision denying therapy in B.C. not relevant, parents argue

By MARGARET PHILP
Saturday, December 18, 2004 - Page A9

  A massive trial pitting parents of autistic children against the Ontario government that had wrapped up three months ago was back before a judge yesterday, with lawyers reopening the case after a recent Supreme Court of Canada ruling suddenly altered the legal landscape.

After 130 days of arguments, lawyers for 29 families with autistic children insisted yesterday that last month's Supreme Court ruling that British Columbia could refuse to finance the costly therapy for children with autism has no bearing on the case in Ontario, where an $80-million program already serves autistic children under 6.

The families, whose sons and daughters are all older than 6, sued the Ontario government for failing to provide funds for the intensive one-on-one therapy called IBI once children reach school age. They allege that the policy amounts to age discrimination, and that the refusal of Ontario schools to allow therapists in the classroom violates the children's constitutional right to a public education by depriving them of the only treatment that research shows can help socially impaired autistic children function more normally.

Mary Eberts, a lawyer for the families, told the Superior Court of Justice that major differences between the B.C. and Ontario cases undermine the impact of the Supreme Court decision, known as Auton.

Unlike in Ontario, B.C. had no government program for autistic children.

And four years ago when the B.C. lawsuit was filed, the court considered IBI to be an "emergent" technique, not rated as a "core" medical service provided by a doctor or hospital covered under federal and provincial health legislation. On this basis, it ruled that the province bore no obligation to start providing it.

But the Ontario families say they are waging their battle as an education issue: Ms. Eberts casts it as a failure of a school system with a multimillion-dollar special-needs budget and a two-decade history of integrating disabled children into the classroom to provide the one therapy needed to educate autistic children.

She said the Ontario lawsuit has more in common with a Supreme Court case called Eldridge, in which the court found that deaf and hearing-impaired patients in B.C. were discriminated against when denied sign-language interpreters in hospitals.

"There is an exact parallel here," she told Madam Justice Frances Kiteley.

"The disabled children here that are supposed to be able to access free public education in Ontario are not able to access it because it is not being delivered in a way that they can get it.

"These children might be in the classroom, and the teacher might be standing there, but they're not getting what's envisioned by legislation."

The Ontario government disagrees.

Robert Charney, the lawyer for the Attorney-General's office, told the court that the Auton ruling undermines most of the families' discrimination claims.

As in B.C., he said, IBI is not a core service covered by health laws. And furthermore, as an intensive behaviour therapy delivered one-on-one by therapists under the supervision of clinical psychologists, neither is it covered under the Education Act.

In one of the few lively exchanges with the judge, Mr. Charney advised that IBI should still be regarded as an "emergent" therapy for preschoolers, and even more so for children over 6 where less research on the technique has been conducted.

He said the same questions are left unanswered by research as were being asked four years ago.

To this, Judge Kiteley asked how the Ontario government could invest tens of millions of dollars to fund a therapy it concedes is emergent.

Referring to a recent report by Ontario's acting provincial auditor that exposed lax oversight and waste in the autism funding program, she also wondered if the Ontario government could have answered some of those burning questions if it had monitored and evaluated its own program.

Edited by author 12-18-2004 07:58 PM
http://news.bbc.co.uk/2/hi/health/3380569.stm



excerpt: Imagine the world without such people?? I bet they would never get dxed by an NT and grovel for a bus pass. I think the condition of injury to self respect, and the actual condition may get confused alot by our "normal" gate keepers.


Brilliant minds linked to autism
 
 
Andy Warhol: Obsessed by collecting
Historical figures including Socrates, Charles Darwin, and Andy Warhol probably had a form of autism, says a leading specialist.
Professor Michael Fitzgerald, of Dublin's Trinity College believes they showed signs of Asperger's syndrome.

Scientific geniuses Isaac Newton and Albert Einstein have also been previously linked to the condition.

Asperger's is associated with poor social skills, and obsessions with complex topics such as music.

  It proves that we should accept eccentrics and be tolerant of them.

Professor Michael Fitzgerald
However, people with the condition are often bright, and have above average verbal skills.

Professor Fitzgerald said the number of people being diagnosed with Asperger's had significantly increased as doctors had become more aware of the condition.

He came to his conclusion after comparing the behaviour of his patients with that described in the biographies of the famous.

He believes the author Lewis Carroll, the poet W.B. Yeats and former Irish prime minister Eamon de Valera also showed signs of autism disorders.

He said: "Asperger's syndrome provides a plus - it makes people more creative.

"People with it are generally hyper-focused, very persistent workaholics who tend to see things from detail to global rather than looking at the bigger picture first and then working backwards, as most people do.

The case of Yeats

 
Eamon De Valera: A single-minded politician
"Yeats for example, had problems with reading and writing and did very poorly at school.

"He failed to get into Trinity College and was described by his teachers as 'pedestrian and demoralised'. His parents were told he would never amount to anything.

"This is typical of people with the condition. They don't fit in, are odd and eccentric and relate poorly with others. Most are bullied at school, as Yeats was."

And yet, said the professor, Yeats went on to prove that he had a hugely vivid imagination while remaining socially aloof - both classic signs of Asperger's.

Strange behaviour

Warhol's unusual behaviour, his odd relationships and his distinctive art also strongly suggested that he had the condition, said Professor Fitzgerald.

 
Charles Darwin: Revolutionary theories
"He was a massive collector of articles, but didn't even take them out of the packaging - his house was like a mausoleum - and he had the same difficulties at school."

Professor Fitzgerald said the success of such high profile figures gave hope to people whose lives were touched by Asperger's syndrome.

"It proves that we should accept eccentrics and be tolerant of them," he said.

"The nation is pushed forward by engineers, mathematicians and scientists."

The claims are made in Prof Fitzgerald's new book: In Autism and Creativity: Is There a Link Between Autism in Men and Exceptional Ability?

Edited by author 12-18-2004 11:03 AM
In case anyone is interested - In today's Globe and Mail there is the following story:- http://www.theglobeandmail.com/servlet/Art...ional/?query=autism . That URL doesn't work. So go to http://www.theglobeandmail.com and enter autism in the search site.
Now it seems that IBI/ABA is the *only* therapy that can make autistic children act normal.
Mary Eberts, a lawyer for the families argues that there is an exact parallel between the Ontario lawsuit and the Eldridge case. But an analogous situation would be the provision of equipment/services to improve autistic person's lives as autistics.

There have been dozens of stories (I've tried to collect most of them) in Canada from slightly before and then after the Auton decision in which our only hope is working towards that ideal normal life.

I guess now in Canada those of us living autistic lives must do so either in secret or in institutions.

Edited by author 12-04-2004 06:21 AM
Here are two news stories about how intensive ABA treatment for autistic children in Canada is essential to enable them to "live normal lives." http://www.ctv.ca/servlet/ArticleNews/stor...44140363_7/?hub=Hea and http://www.ctv.ca/servlet/ArticleNews/stor...253475453_60?s_name= .

In Dr Lovaas' "Clarifying Comments" (2000) paper (you can see the full text here http://www.wrightslaw.com/autism/lovaasexplains.doc ), he devotes a section ("P: Additional Misunderstandings") to complaining about Dr Howlin. Dr Howlin's criticisms of Dr Lovaas lack accuracy and are not those I would as a priority make, but I have the same problem with all Lovaas/ABA critics who emphasize "effectiveness" arguments. This is just to point out that she does not share Dr Lovaas's views, whether one agrees or disagrees with the views she does genuinely hold.

Also, quotes from Dr Howlin's abstracts:

"The review discusses various interventions that have been used in the treatment of children with autism. It concludes that no single mode of treatment is ever likely to be effective for all children and all families."

"And despite claims to the contrary, there is little evidence that very early, intensive interventions can significantly alter the long-term course of the disorder."

I am not saying I agree with Dr Howlin, but whatever she is supporting, it is *not* the view that early interventions change the autistic, or that one specific intervention should be applied to all autistics.

I find her study showing poor outcomes in autistics, regardless of ability, to be very important, though I don't interpret it the way she does (or the way many people would).

My ex- and I listened to Pat Howlin... if it weren't so sick it would be laughable.

No wonder she couldn't think of an answer to my question. Seems to have the same idea as Lovaas and Rekers in the FBP: "easier to change the child than to change society".

Sick.

Very fcuking sick.

Going to puke now.

I listened to that one clip about the savant skills, how do they know where the A brain is not designed to be able to do that. You look at Einstein he had many of the same problems, but he taught himself intensely, when they disected his brain they found the symmetrical shape but real thick neurons, maybe that is it, the left side doesn't work as fast as normal but maybe the right side is better anyway once you catch up. My favourite picture is of Einstein sticking his tongue out at them :)) ha ha.

way too much- over 50,000 a year to make him a jumpy wreck, feeling all inferior when he has the best brain in the world! ABA sucks the confidence out of children. Years ago in the 60's it was called 'patterning' and was eventually outlawed as well- with the growth of angry children and guilt ridden parents all in hiding- it is tragic.
The worst is that ABA providers prey on the weakness and fear of the parents. Can you imagine if this were schizophrenic or Downs children they were thrusting ABA upon? The hapless parents just don't gettit (until too late) that they've been had AND screwed their children. Hard burden to carry. Harder for the innocent.

>
< replied-to message removed by QT >

Well I wonder what they charged to teach him to do that ha ha

I know. I always think it must a bit like being in the middle of a foreign land with foreign language but nobody stopping to care for you, the poor little lost person whom is probably a squillion times cleverer than any of them- years ago in India Autistic children were regarded as HOLY children - ah but they had something then! I know of a lovely boy who uses PECS cards for wanting juice- he uses the 'help' OR the 'juice' card- and if you ask how he is- he's been taught he must respond (ABA) so he responds with a thumbs 'up' either way. I have too little time with him but trying to teach him difference between thumbs down and up. Good luck Lisa, you're never, ever alone.
< replied-to message removed by QT >

Glad you said that. APD/CAPD is very relative to so many- processing TIME can vary so much. It takes one child I know to process a short sentence 5-10 minutes- but he does get it.
>
< replied-to message removed by QT >

Edited by author 11-29-2004 12:32 AM
I went to that link and I am trying to follow the program about auditory processing, ha ha, they missed the point a lot of is not just tone but speed of talking

That is what is so frustrating. They will only offer programs that cost a lot of money, not the things that could improve the quality of life as problems come up.

"Howlin fought to keep a child in an ABA program in a private family court proceedings. She was paid a lot of money to do this."

Ouch.

"I can't say more as it would compromise the privacy of the child. I can say she is easily found as is Simon B-C. I would like for her transcript to be disclosed to the GMC as she needs to be discredited due to her blatant hypocrisy."

I can understand that... I got a round of applause for asking her one of the most sensible questions ever asked in an autism conference about the money spent on these early interventions. I'll tell you later what it was....

"You can still hear the You and Yours program by selecting the 'autism interventions' links here ;
http://www.bbc.co.uk/radio4/youandyours/features/autism.shtml"

I'll check that out.

Howlin fought to keep a child in an ABA program in a private family court proceedings. She was paid a lot of money to do this. I can't say more as it would compromise the privacy of the child. I can say she is easily found as is Simon B-C. I would like for her transcript to be disclosed to the GMC as she needs to be discredited due to her blatant hypocrisy.
You can still hear the You and Yours program by selecting the 'autism interventions' links here ;
http://www.bbc.co.uk/radio4/youandyours/features/autism.shtml
>
< replied-to message removed by QT >

Autismsite, tell us more.

I don't particuarly like either of them; Cohen seems to jump on to many bandwagons and still accepts funding from CAN as far as I know.

I thought Howlin might have been someone to rely on, but then I heard her on Radio 4's You and Yours programme and she practically cursed us.

I can assure you that Prof. Patricia Howlin supports ABA - she did so in court against a friend of mine. I can also assure you Prof.Baron-Cohen supports it, I have spoken with both of them.



< replied-to message removed by QT >

Hi Lisa....

"That last leter sounds famiiar, he got help until he was dxed then after he was dxed he wasn't. I think there is some "merit" in the dx can really do more damage than good. If a person gets dxed to get supports but only gets treated as if they are hopeless and a write off why get dxed at all?"

I know what you mean.

As a psychologist, I have this qualification to diagnose, and I have to say that many that are Aspies - unless they were actually having problems - I wouldn't even consider making the diagnosis for.

>http://www.cbc.ca/sunday/feedback.html

Just printing off the responses...

Some of them are just stupid.

I want to find out how many are actually cogniscent of the real issues in autistics' welfare...

I shall report when I can figure it out....

No guarantees....

That last leter sounds famiiar, he got help until he was dxed then after he was dxed he wasn't. I think there is some "merit" in the dx can really do more damage than good. If a person gets dxed to get supports but only gets treated as if they are hopeless and a write off why get dxed at all?

CBC has their feedback Page up for last Sunday's show: http://www.cbc.ca/sunday/feedback.html

Edited by author 11-25-2004 08:49 PM
And as she was slowly autonisized she was told nothing about the comparative group test which had failed. Alas these children were neither mentally ill or trained seals, with what could they be compared. And there was a voice no one could hear, saying I am cause I am here.

Re /m102 , I like "Autonian" quite a lot.

It could be a verb also, as in "The cold-hearted Court has betrayed our children," she tearfully autoned. "Now a whole generation of autistic children will have to be institutionalized."

The thing is to be normal means nothing, you have to show a specific goal, and then fight the accomodation if it can be shown that it is reasonable,

$60,000 is way over reasonable

The communication with symbols images it may even be faster than language.

Perhaps this could be a reason to have a universal language, the way mathetics achieves global definitions of things.

I think the answer lies in communication.

I am so sick of this assumption of the low functionality because of the communication thing.

The thing is take away the channel of communication then anyone is very vulnerable.

Philip...

>The real discrimination is the belief that autistics can only be equal if they are trained to be normal.



Yep.

That is absolutely accurate.

I just read the letter, that the link was posted, the whole reason why the case was lost was missed.

The comparative group test.

The communication thing is everything. Without being able to communicate a person knows very little about who you are. That is a goal of accomodation. Some people define being human as being able to communicate.

Anybody can assume anything about another person if communication is very difficult.

The facts of the inidividual have so much to do with communication. But this doom and gloom makes it ten times worse especially if it borders on hysteria.

We are lucky we live now there is technology to help people communicate. I wish they take that seriously.

I think Nina is right she has the right to be herself, we all do, the more practice we get the better we get. The first thing that will be noticed is how we talk not what we say so I can see phoning a talk show but I would never be on one. You control the structure if you phone in, but you don't if you are on one. I think the word Autonian is good too :)

Edited by author 11-24-2004 06:48 PM
I think that is why they lost the argument, the goal is not to be the same but to be treated equaly, which of course is why it is so wonderful people are talking about talking.

I know intense practice makes a difference, my mother always did that, but she alao made sure I was mad enough to put the effort into the extra work so that I could reach for the top.

That is the goal, you have something you want to and you qualify to do it with reasonable accomoations, then you have been discriminated against.

So you compare to the another person who the right you want.

And they you focus on the facts and the opposition's errors.

The goal is not to be the same it is to have equal access.

I think the doom mentality is part of the discrimination, and the doom and lack of communicating enough to do parallel thinking with the person, and I think if this part was worked on we would not be so frustrated.

Re: the letter referred to in /m102 .... now I'm going to puke before I go to bed.

Goodnight all.

:)

in response to:

Phillip said:

" Michelle, how about "Autonian" to describe the wholesale distortion of reality described in /m96?
I would never be brave enough to phone a radio show, so you Michelle (/m100) and you Minna (/m98) have my deepest admiration for your courage in doing so. "


would have always said so also... 'do not have the courage to ever call the radio' ,

and perhaps it would have been better if had not... who knows, certainly dont think that was very articulate... lol if nothing else,
it made it false what the program director at geneva centre (who was their guest) said about
those adults who said their autism was "just the way they were"
[some other caller brought it up, asking about those adult autistics who say such things]...

the geneva centre guy said;
'i know. there used to be those poeple'
 as if , such adults were gone away...
so anyways, if nothing else, it was clear that such adults were here,

[also said, that wanted to object to what the geneva centre guy was saying,
{he said, that these adults who say such things
['we dont need a cure'] are so well off that
we dont need any help }
said that many of us adults, need a variety of supports or accomodations, which many are not getting... and someone asked, what supports would be needing, and said, that am one of the fortunate adults, and perhaps it was because am a single parent to two kids on spectrum?.. but have case management, a support worker... and respite care.. but most adults who need these supports are not getting them... this is what also said... and then someone said, yes, but were not talking about that, do you have a question.. lol

when said, that objected to his analysis
(ofcourse, dont know what came out of this mouth, certainly it was a lot of hesitating, stammering, and spitting words out }

he corrected himself, and said, what he had said was true, of those people who came to present at the conferences
(am assuming he meant at the geneva centre)

so maybe he needs to have some of us, who need all these supports, (and/or more), coming to speak at his conferences... :)

(minna volunteers... if they got transportation, n accomodation arranged, would never try to manourver in t.o again-alone).

minna.

oohh yes, the reason that posted actually, was to comment on the above quote.

(sorry, got hyperfocused on own interests-"excuse me"
 for being autistic in a public place).

the reason that phoned.
was because it was like one of those 'call 911' moments.
sometimes, you just have to do it.
even if you stumble, n spit words...
repeate them a few times,
or sometimes forget to open your mouth when you say them...
even if...
because, if you dont try to say them...


the whole world might be different.

only occasionally....
those occasions occur.

minna

Edited by author 11-24-2004 01:53 PM
Michelle, how about "Autonian" to describe the wholesale distortion of reality described in /m96?
I would never be brave enough to phone a radio show, so you Michelle (/m100) and you Minna (/m98) have my deepest admiration for your courage in doing so.
I found this letter in the online edition of The Vancouver Sun:- http://www.canada.com/vancouver/vancouvers...5-a90b-3796f6b14bee .
Canada is not "less of s country" because of the Auton decision by the Supreme Court, but the attitude that autistic persons only have value if they are subject to treatment which has its goal to make them normal.
The real discrimination is the belief that autistics can only be equal if they are trained to be normal.

But I wish the focus would be on communication.

The damage that is done every day. It is not the skill building that is the problem it is the lack of parallel thinking with us that is the problem.

Just like the way this case was argued, the comparative group test should have been done first.

Edited by author 11-23-2004 11:54 PM
I talk quite well on the phone, but am mostly not brave enough to phone radio shows (I have done it once or twice, shaking the whole time), so hats off to you, minna ( /m98 ).

"the focus will ALWAYS be on building skills ... "

Yes, the skills important to non-autistics, learned at the time and in the way that non-autistics are supposed to learn them, and no matter how long it takes, no matter how many hours/days/weeks it takes to drill the each skill. And on the assumption that we're inherently doomed, have nothing to lose, and should we learn anything at all, this is much more than could be expected.

Edited by author 11-23-2004 11:21 PM

They used the mentally ill as the comparative group which as an argument for 15.1 didn't even make sense, it is obvious you need to compare to a group who is getting the benefit that you are entitled if you weren't singled out due to either charecteristics, assumptions, fears, etc etc of the disabilty, so you are known by your ability, this is a great idea, but the speach damms you everyday to look like a freak. you are either treated like you are retarded or mentally ill or drunk or stoned anything but who you really are inside beyond the speech thing, then you want to stop talking to people.

Every time I see one of those "workers" using the word entitlement, not the word service or equalizer but a put down word, Ithink about the flu shot, the shortage of the flu vaccine or whatever it is called, you never see a shortage of viagra.

"THE HIPPOCRATIC OATH
I swear by Apollo the physician, by Æsculapius, Hygeia, and Panacea, and I take to witness all the gods, all the goddesses, to keep according to my ability and my judgement, the following Oath.


To consider dear to me as my parents him who taught me this art; to live in common with him and if necessary to share my goods with him; to look upon his children as my own brothers, to teach them this art if they so desire without fee or written promise; to impart to my sons and the sons of the master who taught me and the disciples who have enrolled themselves and have agreed to the rules of the profession, but to these alone the precepts and the instruction. I will prescribe regimen for the good of my patients according to my ability and my judgement and never do harm to anyone...If I keep this oath faithfully, may I enjoy my life and practice my art, respected by all men and in all times; but if I swerve from it or violate it, may the reverse be my lot." ha ha

Edited by author 11-23-2004 02:23 PM
was the last caller on todays 'Ontario Today" show on CBC radio with Allen Neil,
trying to speak to this matter of the supreme court,
and would have liked to ask a question
about the guests opinion on the future direction of the attention now, that the supreme court has ruled, as some of us autistic adults point out, that we do not need ibi as a medical necessity... wondering if the push will now be on for supports for the autistic with less emphasis on changing that person...

(those are the words that wanted to say, but could not get them out, properly, and in order, and etc. etc.
it was a total mess anyways. imho.
 BUT perhaps the guests got the idea?

since the reply was:

"the focus will ALWAYS be on building skills ... "

minna

ps. do not speak on the telephone typically.
dont call anyone generally, and the support worker that have, is the person who makes phone calls for appointments etc. so this was an attempt to speak on the phone ONLY beacuase this was an extremely important issue....

Michelle's Dad probably said they whole thing, he is proud to be her father. I think that means alot.

I think the communication problem and wanting to stay inside your head may be for a lot of reasons, but if you have a dad who says he is proud of you then you feel better about yourself.

Re /m90 , the outpouring of sympathy for the ABA parents is exactly mirrored by the outpouring of condemnation of all autistics--both for sure have escalated. The Court is called cold-hearted for making a decision based on the case before them; this being mirrored by the cold-heartedness of the parents who, by insisting that autistics truly belong in institutions, ensure that many autistic children and adults will meet this fate. I wish there were an adjective, something equivalent to "Orwellian", to describe this kind of wholesale distortion of reality.

The good news is that my dad got a letter published in the National Post:

-----------------------------------------------------------

Right thing?
  
National Post, Monday, November 22, 2004

Re: Ottawa Has the Money to Do the Right Thing, John Ivison, Nov. 20.

Yes, but is it the right thing? In her judgment, Chief Justice Beverley McLachlin writes, "While increasingly accepted, Applied Behavioural Analysis (ABA) or Intensive Behavioural Intervention (IBI) therapy is not uncontroversial. Objections range from its reliance in its early years on crude and arguably painful stimuli to its goal of changing the child's mind and personality. Indeed one of the interveners in this appeal, herself an autistic person, argues against the therapy."

The parents were insisting that all autistic children undergo this, and only this, treatment, a treatment whose efficacy is far from proven and whose ethics are dubious.

ABA proponents tell us those who do not undergo the treatment are doomed to be institutionalized for life and a heavy burden on society. As the proud father of an autistic daughter who has not been subjected to ABA, and who is living on her own, I am happy with the decision. I am also happy that due diligence is being exercised when spending my tax money.

W.K. Dawson, Vancouver.

I think our health care is not that individualized, it is more "universal" and doctors have a lot of discretionary power, and thre is one manager. I think that is partly why people are "treated" instead of "supported" when they have this.

In England there appears to be more protection for the patient, the doctor is required to talk to the patient and familly and having reasonable procedures done to protect dignity is also in their bill of rights. Which is what I think is what the parents wanted, more than something a comparatable group is getting.

I think here we give the doctors more power of discretion and expect them to follow the code of ethics.

They should have known this was not a 15.1 case, and they needed a compartative groupo in their argument, I think though our socialist health care system does alot of gate keeping, and so does the educational one, I think we have a very strong opposition against the liberal nature of our country.

The Globe and Mail had a good editorial yesterday about how this should not even be in the ministry of children and familly services, but treated as the medical issue it is based what is known today. I think that is a very good point.

I don't see why the communication part of the disability is not worked on more in the schools with technology and interacitive disks where the kids learn to work with the technology to communicate etc so they wouldn't feel so frustrated.

They need to take one thing and compare it to the grouop that doesn't have this, and argue on the true false attribute, but these people appear to not want to accomodate the attribute part, that is Michelle appears to be saying, that the nature of this needs to be understood where the programs work with our strengths.

I have talked to some of the people who are supporters of the ABA and they appear to see these kids as very low functioning, I am treated that way too, my old doctor was like that too, we land up having to fight assumptions instead of actually enjoying the programs we are participating in.

Hi Michelle,
Re /m74, the anti autistics reaction to the Auton decision is what I feared.
"They never autistic people crying and in pain when we have devastating decisions made about about us."
That's because they don't believe that we are capable of human emotions.
"I have read such hostile public condemnations of all autistics that I really wonder if we can exist in this country, which does not want us."
That made me inexpressibly sad, and also so angry.

Well, here's the email I sent to the lawyers. They made the wrong argument in trying to get the level of scrutiny raised for medical care. But then, they made the wrong argument here in the U.S. when they tried to raise scrutiny in San Antonio School District. The link--between what constitution authors intended and what constitutions say--is the idea of a fact of the individual, as you will read below. If you use this analysis and reargue the case, you will win.

Dear Counsel:
 
I think you can get this case reversed under a new analysis. I'm not familiar with Canadian Supreme Court practice, but perhaps you can ask for a rehearing to allege these grounds.
 
As you may know, we tried equal protection in San Antonio School District v. Ramirez, but the real analysis is under a "fact of the individual" analysis, if you want to raise the level of scrutiny (which is what you're trying to do).
 
There is a case currently before the U.S. Supreme Court--Kelo v. New London, 04-108--which is nominally an eminent domain case regarding housing. However, the article linked below shows how it may be used to raise scrutiny of facts which, today, we see are identical to facts which, under American law, have always enjoyed either strict scrutiny or no exceptions at all. For example, every establishment of religion is banned. The word every comes from James Madison's statement that the Constitution "prevents every assumption of power in the executive or legislative." Our question has always been: what does every mean? Now we think it means, a "fact of the individual." These are things people do no matter how governments try to distort the fact. Denied speech? Speak elsewhere. Invountary servitude imposed? Resist. History shows that certain facts inhere in the individual and do not change. So Madison is saying that those facts are always vindicated and governments cannot undermine individuals with respect to those facts.
 
Housing and medical care are also facts of the individual. So change your analysis. The reason it has not been changed so far in American law is that we simply didn't know what "every" meant. But now we have tests for it, as the linked article shows. So don't despair--just relitigate. You didn't have these conceptual tools, neither did your opponents, and neither did the court. But you do now. So, back to the bench!
 
Cheers,
John Ryskamp
 
Ryskamp, John, "Kelo v. New London: Deciding the First Case Under the New Bill of Rights" . http://ssrn.com/abstract=562521

Edited by author 11-22-2004 08:59 AM
She is credible and awsome.

The paragraphs 50 - 55 were great, somebody must have known it wasn't going to go through, there was no comparative group, accept perhaps trained seals, how could they think they were going to win a discrimination case with no comparative group, because there is no comparative group which is not accepted as who they are as much as this group and the whole point is to train them to be close to normal as possible, I am not saying that motive is right or wrong, but Section 15.1 appears to be designed to accomodate the true attribute so the group can participate like they would if they didn't have that disability or attribute. It is so classic. The comparative group test should have been a clue at the very beginning that wasn't the section to use. I feel sorry for the parents, It wasn't technically about equality rights as described in 15.1 cause that implies respecting true attributes, in this case they are trying to change the attributes so the kids fit in, which I understand, I try to do the same thing, damn frustrating though, you are never normal just near normal. The15.1 implies equality rights just because you are Canadian and you are humen and expects a human comparative group not possibly trained seals as a comparativie group, I think that should have been foreseen. That the comparative group test is for, I am sure the parents want the kids to be treated the same as everyone else, but the idea is to have the true attributes accomodated for so this can happen, not hidden or covered over and pretend they don't exit, the true attributes are supposed to be understood enough to be accomodated for, which implies communication without the fear. God it was section 15.1, for a moment you feel you can be equal when you read that. And then the moment goes away/ But this is the same system that gives doctors the right to act as God in people's lives because the process of a getting a note gives the doctor the power, and it is frustrating for the patient, you hold it in you get high blood pressure. Of course the parents want the best for their kids, and probably know that is what happens in real life. Gatekeeping is often a hidden transaction . Those parents probably experience that condition first hand more than anyone. 15.1 is wonderful in writing, but the reality if the kids can't get close to normal they will be held back, I beleive by the social disability which section 15.1 is designed to correct. The bus pass is a good example, so simple, not exempensive, would make a huge difference to a person, the cost for the doctor's appointment is probably close to some rides on the bus, in england doctors have to show that they are taling and being fair to the patients, here a doctor can say whatever they want, and there is no accountability which is accessable and no and to power trip and then get the person kicked out of the clinic once you can't hold your rage in any more and lose your health care too. That is why the parents want the kids to assimulate best possible. It is valid considering the way it really is.

http://www.bchrt.bc.ca/down/decisions_2004...02004_BCHRT_266.pdf

this shows what happens, why 15.1 doesn't work the way it is supposed to. Cause the doctors don't have to be accountable when they deny notes. Chronic pain is chronic pain. And a lot of people in that position dont' have computers or the education to know how to differentiate between the comparative grouop which is the most priviledged in their own experience and the one which would fit the complaint, but the people who act as the judge are suppose to give guidance, chronic pain is disabling. It seems like evveryone who has the power to make a difference holds it back and uses gate keeping power. that is why the parents fear for the kids future. They dont want their kids to have to grovel for notes for the rest of their lives. I fear for my own future.

From: Lisa G Time: 09:25 PM
I didn't realize this was an email dialogue. I think though
Michelle Dawson is incredible.
 
I think she is quite credible, but she IS awesome! ;-)

Edited by author 11-21-2004 09:21 PM
I think from my experience the problem is any accomodation becomes an ordeal so a person' growth is put on hold. There was complaint by a woman she wasn't autistic but she tried to get a note for a bus pass to go looking for work cause she had chronic pain in her knee. She didn't frame her complaint around her chronic pain etc.

You have to almost have to have no knee before some doctors who act like they are God's chosen "gate keepers" will give you a note, so a person is stuck doing nothing, and we are just talked to like we are bums who will do anything for their lunch money. I am so fed up with the dishonesty of the whole thing. I mean a person's life is put on hold, and the effect is not even considered or talked about in the development of the person. The doctor if what she said was true did not even consider the difference she could have made, cause what does she know, with her fancy clothes and fancy car. I am so fed up with the lack of differentiating between the social disability and the physical or mental disablity, and I think that is everything. Segration limits a person, so denying a bus pass limits the person. That is what I think it is about. A person who communicates from inside out may be who we all want to be. If society as we know it was no longer sustainable, I am sure these fancy yuppy doctors will have a break down the first time they have to pee in an alley way. I am not bitter. How can society be sustainable when a doctor will not write note for a simple thing because they define their own power against our lack of power. We are disabled they are enabled. They keep it mysterious so we stay disabled.

I think some doctors won't do the little things and then the person deteriates. so there is very little support for mental health maintenance. I think we are dealing with two problems, the difference of being autistic, but the effect of segregation, by not giving accomodations that could keep a person moving in the society and stimulated. A simple thing like a bus pass would have changed the person's life, would have been healing, a person who gets depressed because of their isolation is then dxed with that, where is the turning point. Somethings are just as good as pills.

How could anyone understand autism if they don't talk to people who may have it like human beings instead of sub humans.

How can we grow out true attributes when we are having to grovel for our next meal, when such simple things could make such a difference. Sort of like ramps.

A person shouldn't have to hit rock bottom before they are given an accomodation, they should get one as soon as they know they need one. and I think that would make a huge difference, that is about equity. The doctors have incredible power over people who need a doctor's note for an accomodation and they know it. she was alleged to say I control fate, that is not right. but I can believe it. If what that doctor said is true about the gate keeping, that is an abuse of discretionary power issue. The woman got angry in her office and then she is denied health care there. I think this happens all the time.

I think the lack of interaction may be one reason for the inside out effect.

Once a person is dxed they are often talked to differently, so the whole thing feeds its self.

the other thing is the people who have autism may learn in pictures, that may be what they need.

I think Einstein said alot about that seeing in pictures.

I didn't realize this was an email thing.

Ah, so he's gonna use ABA on the clouds to stop them from raining, is he?

I heard of a Danish king who tried to command waves to stay back, ostensibly as a demonstration of the limits of the power of even a king.

And as a meteorologist, he is very qualified to say how important ABA/IBI are, and how without it, the autistic is doomed to being in an institution....

I don't open my mouth and make pronouncements on stuff I have no knowledge of. He should do the same. Unless he is a psychologist, I can't see me taking him seriously, unless he is otherwise well read in this whole area (and I don't mean just behaviourism).

Dr Zwack is a meteorologist.

"On the radio yesterday, Dr Zwack was stating the importance of ABA/IBI and that without it we will be institutionalized."

I want to know what his sources are for this. Because I haven't found any.

Scare tactics, and if he has to resort to that, he's not a fucking doctor of anything!

"The thing is, nobody really understands autism."

I am an autistic psychologist specialising in autistic spectrum difficulties, and I can't claim to fully understand it; something new about it unfolds every day.

"I have also seen children improve on ABA programs, but all it took was using the imitation and reinforcement- that can be manipulated into anything."

Yup. A problem for me is that (with the Lovaas study) the kids being experimented on were probably likely to develop reasonably well without the "treatment" in any case.

"The last thing a non-veral child needs to do is learn 'total complaince'? My child had to have an invasive enemea procedure - I fought to have him sedated vecause I didn't want him to know what was going on- but the social worker said I was abusive in asking for sedation and that he had been 'very good; at accepting this tube where any other child would have been able protest."

And ALLOWED to protest, mind you.... The social worker should be complained about. I would complain. Sedation for an invasive procedure like that, in a child who may well have been more sensitive to touch (you would know better than I would, but I think you would agree... many of us autistics are sensitive to touch), should have been allowed. Being "very good at accepting..." is just a euphemism for "has learned to put aside his discomfort for our benefit, to show that we have taught him to be less autistic"... I won't begin to tell you how much of a problem I have with that sort of attitude.

"Every step taken against ABA is one step towards prevention of serious child abuse. 'DO THIS' is the firs 'SD' they teach- and it's all about 'compliance' not about anything else. It isn't anything to do with teaching independence, that is for sure."

On the other hand, even with the lack of outcome studies, the TEACCH approach has been adopted with success in many UK schools. That might be worth chasing.

Edited by author 11-20-2004 08:02 PM
The thing is, nobody really understands autism. I have also seen children improve on ABA programs, but all it took was using the imitation and reinforcement- that can be manipulated into anything. The last thing a non-veral child needs to do is learn 'total compliance'? My child had to have an invasive enema procedure - I fought to have him sedated because I didn't want him to know what was going on- but the social worker said I was abusive in asking for sedation and that he had been 'very good' at accepting this tube where any other child would have been able protest.

Every step taken against ABA is one step towards prevention of serious child abuse. ''DO THIS'' is the first 'SD' /instruction they teach- and it's all about 'compliance' not about anything else- I speak from first hand experience.

It isn't anything to do with teaching independence, that is for sure, and I have implemented and been a proponent of ABA and all it's styles.

It is a big fat fake and dangerous.

The thing is, nobody really understands autism. I have also seen children improve on ABA programs, but all it took was using the imitation and reinforcement- that can be manipulated into anything. The last thing a non-veral child needs to do is learn 'total complaince'? My child had to have an invasive enemea procedure - I fought to have him sedated vecause I didn't want him to know what was going on- but the social worker said I was abusive in asking for sedation and that he had been 'very good; at accepting this tube where any other child would have been able protest.
Every step taken against ABA is one step towards prevention of serious child abuse. 'DO THIS' is the firs 'SD' they teach- and it's all about 'compliance' not about anything else. It isn't anything to do with teaching independence, that is for sure.

Finally, an Auton story that has another viewpoint. See http://www.canada.com/victoria/timescoloni...7-8c9f-b6ec7b06731f , it is on the second page. Here is the relevant part:

----------------------------------------------------------

Victoria mother Sheri Marino, who has an eight-year-old autistic son, had mixed feelings about the judgment. She felt sad for the families involved but she also believes that the decision opens the door for other possible approaches to treatment.

Marino is a strong believer that autistic children should not be forced to conform to society's version of normal.

"Being forced into what the world sees as near-normal takes away their dignity,'' she said. "Autism is not a disability. It's a type of person.''

Edited by author 11-20-2004 07:26 PM
I won a tribunal here in the UK to have my child reassessed- imagine having
to fight at a tribunal (against many professionals and the other parent)
just so an 'impartial' assessment can take place from the local councils' OWN
Educational Psychologist? This is all but 'round one' but we have a gift on
our side- it's called 'Autism' www.celebrateautismtoday.org
NB Why- if ABA is so openly attractive and successful- will they not welcome (with wide open arms) ANY person from the medical/health/educational professions? As my sons' mother I sent two good (professional) friends to the school to visit and regard- the school were incredibly worried about who they were/qualifications etc. In fact they were (my friends) people familiar with ABA and no longer great fans of it. Pavlov was mentioned. They keep my little one happy by lobbing chocolate and other candy into his mouth all day and then say 'he's happy, why move him?' -he was ALWAYS happy. Born giggler. And sociable. Now let him go so he's not afraid NOT to stick his thumb up when you ask him 'how are you'? He'll do it if he's fine or sad.

It's been drummed into him via child abuse that is known as ABA.
Thank you.

----- Original Message -----
From: "QT - Michelle Dawson" <qtopic+25-aDxhLNmfnRfKw@quicktopic.com>
To: "QT topic subscribers" <qtopic+subs@quicktopic.com>
Sent: Saturday, November 20, 2004 11:29 PM
Subject: An Autistic at the Supreme Court - Michelle Dawson


> --QT-------------------------------------------------------------
> Reply by email or visit
> http://www.quicktopic.com/25/H/aDxhLNmfnRfKw/m74
> -----------------------------------------------------------------
>
> Philip, Re /m71, my own interpretation of Eldridge (in my
> factum) is very different than the interpretations of both the
> parties in Auton (as well as of the trial and appeal judges),
> and consistent with yours.
>
> The effort now by the ABA parents will be to change the relevant
> laws, especially at the federal level. There will be a huge
> effort using the momentum from all the sympathetic coverage that
> parents have received.
>
> They never show autistic people crying and in pain when we have
> had devastating decisions made about us.
>
> This coverage (there has been an avalanche of media) has been
> more than discouraging. There has been no attempt at balanced
> journalism, or at respecting the existing science or even basic
> decency when it comes to portraying human beings who are
> autistic.
>
> Many of the ABA parents seem to be responding to the judgment by
> escalating the rhetoric even more. I have read such hostile
> public condemnations of all autistics that I really wonder if we
> can exist in this country, which does not want us.

Edited by author 11-20-2004 07:14 PM
There has never been any impartiality in ASC's legal positions (they support the Auton parents' position in its entirety) and accompanying press releases. This goes back a long ways, including ASC's prior support for the Quebec ABA class action, in which Dr Zwack is directly involved, and ASC's strong support for the Auton trial and appeal decisions which have now, with good reason, been overturned.

On the radio yesterday, Dr Zwack was stating the importance of ABA/IBI and that without it we will be institutionalized. Is this what ASC means by choice? But that one's on another comment board...

ASC has dug an even deeper hole for itself in the meantime:

http://www.autismsocietycanada.ca/docs/FINALAuton%20Decision.pdf

Whatever claim to impartiality they had has gone to the toilet.

Philip, Re /m71, my own interpretation of Eldridge (in my factum) is very different than the interpretations of both the parties in Auton (as well as of the trial and appeal judges), and consistent with yours.

The effort now by the ABA parents will be to change the relevant laws, especially at the federal level. There will be a huge effort using the momentum from all the sympathetic coverage that parents have received.

They never show autistic people crying and in pain when we have had devastating decisions made about us.

This coverage (there has been an avalanche of media) has been more than discouraging. There has been no attempt at balanced journalism, or at respecting the existing science or even basic decency when it comes to portraying human beings who are autistic.

Many of the ABA parents seem to be responding to the judgment by escalating the rhetoric even more. I have read such hostile public condemnations of all autistics that I really wonder if we can exist in this country, which does not want us.

Autism unjust decision, I ask:
Was the wrong Act Used...ONLY Medical and not including Educational
Services?

In British Columbia, the MPA follows this model. Core services are those
provided by medical practitioners and are fully funded. Non-core services
may be funded if they are provided by health care practitioners, a limited
list of occupations defined within the Act itself or by regulation by the
Lieutenant Governor in Council. Only partial coverage of non-core services
is provided. The Medical Services Commission may at its discretion add new
therapies to the roster of insured core services provided they are delivered
by a health care practitioner designated by the Act or regulation.

 http://www.sentex.net/~nexus23/naa_scd.html

Comments of Donna Young

Dawson Creek, BC


_________________

Box 504
Dawson Creek, BC
V1G 4H4

Tel: 1-250-782-9223

>This decision will not stop the ABA/IBI bandwagon, but at least it will slow it down.

Philip, check the Misbehaviour board... they seem to have been sent in another direction at just the right time for this decision ....

Edited by author 11-20-2004 10:31 AM
Here is the report of yesterday's Supreme Court ruling in the Globe & Mail:- http://www.theglobeandmail.com/servlet/sto...19.waut/BNStory/NAT
Sabrina Freeman said the Court was intimidated by the Attorney-General of Canada and provincial Attorney-Generals "Who spooked them about how much this would cost." That is nonsense. As far as I understand the Court's decision its basic position was that because the funding of ABA/IBI therapy is not designated as a "core" delivered by a medical practitioner under the Canada Health Act 1985, or as a non-core medical service provided by a "health care practitioner" under the Medicare Protection Act 1996 in British Columbia.
The parents cited the Eldridge case, which held that the government of BC was obliged to provide translators to deaf persons so that they could have equal access to core medical benefits. An analogous provision for autistic persons would be the provision of key boards to autistic persons who are effectively non-verbal, such as Amanda.
I believe that the Court should have ruled that the provision of ABA/IBI therapy which has the "goal of changing the (autistic) child's mind and personality" in fact to make autistic children 'normal', is discriminatory against autistic people and a violation of their rights under Sections 7 and 15 of the Canadian Charter of Rights and Freedoms.
This decision will not stop the ABA/IBI bandwagon, but at least it will slow it down.

Edited by author 11-20-2004 10:00 AM
Hi Michelle,
I also thank you with all my heart.

Hello everyone

The Supreme Court decision is now posted here:
http://www.sentex.net/~nexus23/naa_scd.html

Michelle,

it is with great joy and tremendous gratitude for your successful efforts,
that have come to visit you in your discussion space.

it is with deeply felt expressions of relief,
that am going to be sharing this info asap.
worldwide.

this is marvelous,
beautiful,
and you have become a 'folk hero' like a robin hood,
in the eyes of mine kids.

on their behalf,
am saying thank you.

minna

Sabrina says:

"Why do we have a Supreme Court of Canada, if they cannot uphold the Constitution and they cannot protect the most vulnerable members of society from the vagaries of government?"

What? The ABA-autism-industry types are the most vulnerable? Come off it!

She is an idiot: she can't accept the facts, and has a hostile attitude towards what is actually true... namely that ABA is NOT "medically necessary" for the kids... it's only "financially necessary" for her!

Edited by author 11-19-2004 02:18 PM
>Sabrina Freeman looks rabid.

Not surprised... she probably lost half of her business.....

>----------------------------------
Sabrina Freeman, Ph.D., received her doctorate from Stanford University. Dr. Freeman, a sociologist and publisher, is also the mother of a child with autism and founder of the parent self-help group, Families for Early Autism Treatment of B.C., Dr. Freeman has put her many years of experience with autism treatment and advocacy into this important video guide for new parents. As the author of Teach Me Language and Executive Director of F.E.A.T. of B.C., Dr. Freeman has guided thousands of parents around the world on what to do with their children, newly diagnosed with autism. This 35 minute video puts together all those years and countless hours of questions and answers from calls of parents who all say, "my child just got diagnosed with autism: now what do I do?"
>--------------------------------------------

Sabrina Freeman looks rabid.
< replied-to message removed by QT >

It's great news about the Auton judgement, and I'm so pleased and happy with relief that the Supreme Court didn't decide in favour of the parents.
It seems Michelle that your intervention influenced the
judges.
I am very interested in reading the reaction and comment in the media, such as CBC, Globe & Mail, Toronto Star. Here is the CBC News report: http://www.cbc.ca/story/canada/national/20...emecourt041119.html
No doubt the parents, Autism Society Canada, various FEAT groups and other advocates of ABA will use the opportunity to publicise their opinions.

Bravo. Congratulations and all our love from all the misery and hell you've saved - you have no idea how I am on the floor weeping with relief - bless you always Michelle xx

< replied-to message removed by QT >

Philip, everyone:

The parents lost. The appeal by the BC government is allowed. The parents' cross appeal is denied.

The trial and appeal judgments are overturned.

The SCC judgment has a few problems in it but it really is extraordinary to have all those years of terrible decisions reversed.

The failure to fund ABA/IBI is NOT a violation of our Charter rights.

The decision will be posted on this site (I hope; I've asked my boss Ralph). In the meantime it is here: http://www.lexum.umontreal.ca/csc-scc/cgi-...thod=all~~x=7~~y=11

I am the only intervener mentioned in the judgment:

"While increasingly accepted, Applied Behavioural Analysis (ABA) or Intensive Behavioural Intervention (IBI) therapy is not uncontroversial. Objections range from its reliance in its early years on crude and arguably painful stimuli, to its goal of changing the child's mind and personality. Indeed one of the interveners in this appeal, herself an autistic person, argues against the therapy."

I am in shock, but quite happy.

Hi Philip...

"There is the usual claim that Intensive Behavioural Intervention is necessary to ensure autistic children's rights under the Charter of Rights."

The only thing necessary to ensure rights un that Charter, surely, is that one is "alive"! Isn't anything above and beyond that completely superfluous?

Hi James' mother...

"It would be interesting if Canada decides ABA is a medical issue. In the UK it is regarded and is funded as an educational intervention. No self-respecting clinical pschiatrist in the UK would endorse such a regime. Having said that, I hear Prof.Patricia Howlin and Prof.Simon Baron-Cohen now support it."

Last I knew, those two weren't supporting it, but I'd have to check, since it's over a year since I saw Pat Howlin present on the topic of early intervention at the Nordic Conference in 2003. As for Simon, I'd find it hard to believe that he's go for it... but again, I'd have to check on this one too; it's back in 2001 when he was chuckling a bit after my telling him that one of his team and myself had been "taking the piss out of Skinner" ;)

"The UK would have to think twice about future funding for ABA if Canada judge erroneously."

Yes. As you point out above, it is considered to be educational in the UK, but the way things have been going there leads me to suggest that we are being taken to some sort of Americanisation goal (the Student Loan thing, the NHS Trust thing and now the unquestioning willingness to go to war alongside the US on a total false prospectus....)... I fear that HMG may well redefine things.

The day that they do, I shall immediately seek Finnish citizenship and send my burnt passport back to the Queen, informing her that I hold her in disaffection, and that her only way to persuade me to restore her to my affection will be to place an out-of-office Tony Blair in the cell closest to Traitors' Gate. I could go on, but it might still be treason.

"Smart move on the part of the parents' deciding to let the lawyers put the case. The grown children post- ABA would be suing the lawyers, not the parents for emotional and or physical abuse."

Yes. Which means that the lawyers acting in favour of this matter must be suicidally stupid! Anyone may quote me on that, as long as they say where they got it from!

Thanks for your comments, J's M.

David

Hi Michelle,
I am awaiting the Auton decision mostly with nauseous dread, fear, apprehension and hair pulling and hair twisting. But until it is actually announced I still cling to a very small fragile hope that it will not be as bad as we fear, and that perhaps the Supreme Court Justices may have accepted your arguments and have decided in favour of your intervention.
But I much more think we will require all our moral strength and courage.

It would be interesting if Canada decides ABA is a medical issue. In the UK it is regarded and is funded as an educational intervention. No self-respecting clinical pschiatrist in the UK would endorse such a regime. Having said that, I hear Prof.Patricia Howlin and Prof.Simon baron-Cohen now support it.

The UK would have to think twice about future funding for ABA if Canada judge erroneously.

Smart move on the part of the parents' deciding to let the lawyers put the case. The grown children post- ABA would be suing the lawyers, not the parents for emotional and or physical abuse.

The media has been full of reports about the Canadian ABA cases (New York Times and National Post and Globe and Mail--the Globe with multiple stories). This class action (/m56) is new, and the cases at the Ontario Human Rights Tribunal are being heard. The Tribunal cases are disturbing in that the children themselves are said, via their lawyers, to be arguing that IBI is their "medically necessary" right (versus their parents arguing this).

The Auton decision will be handed down this Friday morning. Here is the announcement. http://www.lexum.umontreal.ca/csc-scc/cgi-...thod=all~~x=8~~y=11

I am dreading this decision.

Edited by author 11-15-2004 11:26 AM
People may be interested in this story http://www.cbc.ca/story/canada/national/20..._lawsuit041115.html .
There is the usual claim that Intensive Behavioural Intervention is necessary to ensure autistic children's rights under the Charter of Rights.

More re the Toronto Star's articles and letters about autism and ABA/IBI. After more than two weeks of a pitched battle with the Star, this (badly edited, etc) appeared:
http://www.thestar.com/NASApp/cs/ContentSe...pageid=968332189003

If that doesn't work it's also here http://www.sentex.net/~nexus23/moc_being.html

The Court deciding in Auton is a 7-Justice Court, since one of the nine had retired, and another had been recruited by the UN. The absence of two justices is certainly significant.

A "narrow interpretation of the law" was a very bad thing for Mr Schmeiser, though the Court was obviously divided on this issue. A very conservative decision would be a good thing in Auton, since this would result in the Court refusing to make what should be political decisions.

The related case to Auton is Chaoulli http://www.healthcoalition.ca/chaoulli.html, which was heard the day before Auton and also challenges the national health care system. In the case of Chaoulli, a person is seeking the right to "jump the queue", that is, circumvent years-long waiting lists for joint replacement surgery (for example) by paying for the procedure to be done privately in Canada. Right now, that's illegal--if you want to go the front of the list, you have to go to the US. Chaoulli is almost the opposite of Auton in its demands and potential effect.

Edited by author 09-03-2004 01:19 PM
In this month's issue of the New Internationalist (not yet posted on their website) there is a report of the decision by the Supreme Court of Canada in the case of the farmer Percy Schmeiser against Monsanto.
The justices' 5 to 4 decision in favour of Monsanto "focused on a narrow interpretation of case law."
A comment on this case can be found on http://www.grain.org/whatsnew . Scroll down to the entry for 24 May 2004.
This is not an encouraging precedent for their decision in the Auton case.

Edited by author 09-02-2004 09:08 PM
(Also posted on the Misbehaviour of Behaviourists comment board) For the sequel to the Star hate speech problem, see the letter they did print this morning http://neurodiversity.com/vermey_letter.html (this version is very slightly revised from what was printed). Was this a plan B? Or does it just look like a plan B? <scratches head>

For a battle over who gets to speak about legal cases in which the rights, nature, and treatment of autistics is decided, see http://www.autistics.org/library/hatespeech.html .

The Globe and Mail case referred to (at the Ontario Press Council) was about their coverage of Auton, accompanied by an eerily similar drawn-out refusal to publish a letter.

now that the medals are distributed,
the ceremonies are over...

Mirela,
incase you are new to the internet...
took the liberty to use 'google' on your behalf.


http://www.google.ca/search?hl=en&ie=UTF-8...=Google+Search&meta=

with 250,000 pages for your reading pleasure.

Happy reading
come back when you've read them....
will find you some more.

minna

Edited by author 08-25-2004 01:04 PM
What I wonder is, about the *parents* who have "views" about "gluten free" diets--are these *parents* the ones living on those diets? I assume this has nothing to do with autism, since autism wasn't mentioned by "Mirela". There are a lot of good sites about celiac disease (people with this disease require gluten free diets). I suggest a Google search. But this isn't a celiac disease site. If pointing that out is sarcastic, etc, on a comment board about a Supreme Court autism ABA case in which only the views of parents of autistics were welcome, then I absolutely apologize. <scratches head>

C.Pipper thank you very much for your help. Michelle this was a genuine message, where i though the people on this discussion might be able to redirect me to appropriate websites or discussion forums. If this is of no relevence to you just ignore the message. Others have been kind enough to email me.

Re /m45, that was outright awe, as well as rank admiration (that message is *very* far from home) and total amazement, ergo the medal ceremony.

I've seen previously a pretty blatant comment board off-topic post (not on this site, and which was then deleted by the moderator) which entirely disrespected the context it was in, and *made no mention* that the author was aware of this. I don't think many people of whatever diagnosis (or not) appreciate others being entirely oblivious to rules of basic courtesy, including consideration for your surroundings. And giving this un-topic more space is no fair to those genuinely visiting this comment board to comment on or around the stated topic.

And Michelle D wins a bronze for sarcasm and a silver for alienating people (even good ones)
>


---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.742 / Virus Database: 495 - Release Date: 19/08/2004 < replied-to message removed by QT >

Re /m44, "Mirela"'s message wins the Olympic gold medal, and sets a world record, for being off-topic.

Hi, I am a student at City University London, and am doing my dissertation on parents view of the gluten-free diet. If anyone is interested in having a discussion about this please email me on mirela_maric@hotmail.com

Just for clarity, there are a bunch of judgments just at the BC Supreme Court (this is the trial Court) level in Auton written by Allan, J. I quote from three of them in my factum (March 31 1999, July 26 2000, and Feb 26 2001). The large number of trial orders/judgments resulted from the many issues that had to be dealt with, including the format of the trial, the Charter issues, and the remedy.

Then there are the two BC Court of Appeal judgments (Saunder, JA and Lambert JA). Then there is the related case (Andersen). It really is amazing how much law has been generated about autistic people without any notion in any of the cases that we may exist as human beings (versus as cancerous tumours) and may have something to say about ourselves.

Philip, the idea that autistics can't communicate is now part of Canadian jurisprudence, where it will forever remain unless the Supreme Court specifically challenges it. I guess I would then have to enroll in an ABA program in order to learn how to communicate.

Edited by author 08-23-2004 01:48 PM
Hi Lucas,
The justices of the Supreme Court of Canada have not yet reached their decision.
The Reasons for the Judgement of Madam Justice Allan in the Auton Case in the Supreme Court of British Columbia on 26th July 2000 is on http://www.courts.gov.bc.ca/jdb-txt/sc/00/11/s00-1142.htm . It is 25 pages long on Print Preview.
If you want to read the British Columbia Appeal Court judgements in the Auton case go to http://www.courts.gov.bc.ca and on the left hand side of the home page under reasons for judgement, type in auton. The judgements you want are cited as Auton et al v. AGBC. That way is quicker than giving you the very long URL for each Appeal Court judgement.

Edited by author 08-23-2004 01:31 PM
According to the petitioners in the Auton case "one of the indicia (sic)of autism is an inability to communicate." Quoted in Madam Justice Allan's decision in the Supreme Court of BC, 26th July 2000. (Paragraph 131).
So Michelle, that must mean that you and I and all the other autistics who have been communicating, have not been doing so.

The judges have reached their decision? Where Can I read it?

I don't know about all of the 5,400 pages of evidence (none of which is provided by an autistic), but none of the judges writing judgments in Auton so far has had one positive word to day about autistics. Both parties also provided entirely negative views all the way to the Supreme Court. The only "good autistic" is an ABA-treated autistic who has achieved passing-as-non-autistic status, or is working towards this lofty goal.

All other autistics in Auton are useless, expensive, insensate, dangerous non-persons who just naturally rot in institutions. That means you and me, Philip, and jypsy and her kids, and minna and her kids, and my boss Ralph, and Camille and her kid, and Peter and Vern and Pam, and Clare and Amanda and Laura and Joel, and so on. They turned us all into deteriorating (getting "worse and worse") monsters--destroying ourselves and everyone around us-- requiring lifelong 24/7 supervision in institutions, and no one in Canada (home of the Charter, which makes us all equal) objected except me.

I think every autistic person on the planet should read Allan J.'s judgment in Auton, as well as the appeal court judgments.

Edited by author 08-19-2004 10:13 AM
Hi Michelle,
Thanks for that information. I would have thought that in the approximately 5,400 pages of evidence in the Auton case would be the truth about autism and autistic people, and recognition of the abilities, skills, strengths and potential of autistics.
Justice Allan's judgement that the "the Infant Petitioners are entitled to a declaration that the Crown has violated their Section 15(1) Charter rights" means that autistic Canadians can only secure their rights if they undergo EIBI, which has the intention of making them non autistic; which is what you argued so well in 'Not With Standing in Canada.'

There are about 5,400 pages of evidence in Auton. There was not a lot of testimony from witnesses. Instead, there are written submissions (affidavits, CV's, school records, records of correspondence, one video, and so on), among which there is practically no published science.

I don't have all the evidence (far from it), but I did obtain a few specific pieces. I also have the Index of the Appellants' Record, in which every piece of evidence and testimony in Auton is listed, as well as the judgments and orders, all of which I have read. I've also read all the Supreme Court applications to appeal, cross-appeal (including the responses and replies), and intervene, and the factums of both the parties and all the interveners.

I still remember the impact of reading, for the first time, Justice Allan's judgments and orders. I was actually in shock. Now I know pieces of these documents by heart, and my copies are dog-eared and worn. But I understand your response totally, Philip. I was outraged.

Re the UK cases, I read about them some time ago here http://mugsy.org/connor27.htm (and this author to my mind misses the essential issues). I also saw a case reported in the UK media (can't remember where now), but I've never been able to find out about a specific case. I don't know which litigation Justice Allan was referring to; such a judicial direction to fund Lovaas is not listed in the evidence, which means it was mentioned in testimony or an affidavit.

Further to my previous message /m34, unless the justices of the Supreme Court of Canada in the Auton Case specifically repudiate Justice Allan's appalling and false statements about autistic people, that means that they agree with those statements.
Also I read in the reasons for judgement in the Auton Case in the Supreme Court of BC that "Litigation in England also resulted in judicial direction to local councils to fund Lovaas Autism Treatment." which I did not know about.

Edited by author 08-17-2004 10:59 AM
The appalling and false statements about autistic people made by the Honourable Madam Justice Allan in her Reasons for Judgement in the Auton Case in the Supreme Court of British Colombia, were presumably based on the opinions and 'expertise' of 'expert' witnesses.
I noticed reading through the judgement that both parties believe that early diagnosis and treatment of autism is essential in the window of opportunity before almost all autistic children are doomed to a life of isolation.
 I would like to a trancript of the proceedings, but I couldn't find it on the Supreme Court of BC website. I assume that it has not been posted there and is not available for public access.

The ASC summary is posted many places. It is lengthy and consistently inaccurate, reflecting the usual priorities of Ms Simmermon and ASC.

Ms Simmermon has another job. This is her description from the program for another autism research conference from which autistics were excluded (CAIRN 2004):

"Lisa Simmermon
President, Autism Society Canada/President, SASKFEAT (Saskatchewan Families for Effective Autism Treatment), Regina, SK"

According to the SASKFEAT site, Ms Simmermon is no longer president, though she is still listed in the executive.

I found this summary of the Auton case by Lisa Simmermon,the President of Autism Society Canada: http://www.ont-autism.uoguelph.ca/auton-summary-asc.pdf

Edited by author 07-12-2004 10:22 AM
That is weird, and it's an extreme thing to do. Why are they doing that? Do they not know that the separation from family might be causing some of the problems? I hate much that passes for social work. People did SO much better before that profession was invented.

Just an opinion.

I hope that he's not in there for too much longer.

YES
< replied-to message removed by QT >

Mumcat, do you mean that they have actually taken your son out of your custody?

Re: 'Maurice giving as good as she gets'. She's living proof that children can get labelled erroneously as autistic or that indeed, some autism is caused by 'an accident' (see Trojan and Mallots' presentation) or 'refrigerator parenting' - whatever- ABA supports the notion Autism is a psychological condition therefore recoverable with psychology. The thing is ABA providers use brainwashing techniques and parents are blind to the fact that ABA doesn't work and is in fact bad for most kids. In my humble opinion they are a cult and anyone who's been near an ABA program needs deprogramming. I am fighting the British government to try to retrieve my son from a school using DTT (CABAS ABA- Douglas Greer, who claims Lovaas stole his work) - my son has had ABA for 8 years, is non-verbal, cannot read, write or point and is in diapers/nappies. Nobody at the school has a qualification between them that isn't an ABA qualification. Maurice AFAIK is a brainwashed person with severe mental illness and needs deprogramming.

>I'll drink to Broader Obligation.

I'll just drink.

I'll drink to Broader Obligation. It will now be used as my justification for everything:

Why am I gaining weight? BROADER Obligation.

You're very welcome, Philip, and thanks again for inspiring me.

The justices have great latitude in what they may decide in their judgment. In Auton, both parties answered the constitutional questions posed by the Chief Justice the same way. I think the parents modeled their "orders requested" on the Eldridge case, in which no law was struck down, but the government (also the BC government in this case) was directed to provide the service requested.

The Supreme Court's role is to be impartial, in every sense of the word. This means all aspects of the case must be considered in the writing of a judgment. I'm guessing, of course, but there are more than two outcomes--parents win or government wins--available. The Court has no legal obligation to choose one side or the other; their obligation is broader than that and I am (frantically) hoping in this case, this broader obligation will be exercised to the full.

Hi Michelle
I agree whole heartedly with your cogent and logical argument in 'The Many Varieties of Being Written Off'. Thank you for mentioning me in the acknowledgments.
Are the Supreme Court justices in the Auton case legally obliged to decide in favour of either the Appellants or Respondents, or do they have the option to reject the appeals of both parties?

The copy below was originally posted here: http://www.quicktopic.com/25/H/4NqUrcUWgSE5R/p261.253#QTmsg259

<copy>According to the QT Webmaster, due to data error in this thread messages 257 to 725 cannot be restored to this board. We do have copies of all messages posted here, so no one's contributions have been lost. We'll make these publicly available as soon as possible.</copy>

Now I have to add that the comment board mentioned below has had an unprecedented glitch, and has lost its most recent 500-or-so messages. My boss is diligently working on rectifying this. Apologies to everyone.

Edited by author 06-17-2004 06:57 PM
Hello Deborah,

Thank you for your message.

There is an extensive discussion of "what to do" on another comment board on this site. This discussion erupted when an aspiring behaviour analyst showed up to defend his position against the arguments I made in that article (the article is http://www.sentex.net/~nexus23/naa_aba.html and is about ethics in ABA/EIBI). Various people with various expertise showed up. This is where it starts http://www.quicktopic.com/25/H/4NqUrcUWgSE5R/p1.7, and useful discussion about "what to do" ends somewhere in the 600's, just to warn you, and also to warn you that some of it might be offensive or useless to you--some of it is offensive and useless to me. Near the end of the useful (for you) stuff, there is a fairly consensual listing of what "ethical" looks like when you're working with autistic kids, including the difficult question of what on earth to do with self-care skills.

We all, I think, agree that self-care skills are the hardest to learn. My self-care is rudimentary and lousy. But it is "appropriate" to me. I've already confessed that tying shoes is a big problem--so I don't tie shoes. And it is far too dangerous for me to cook. The priority placed on self-care is in many cases misguided, and I will not agree with you about what "appropriate" means in this context. By a description of me, and some people I know, you would assume we could never be autonomous. But we are; there is more than one way to live, and while our way is unacceptable to non-autistics, it is possible.

In the article I describe above, I write about false oppositions. In this case the false opposition is "either ABA or doom". You oppose ABA with aversives-restraints-medication (medication is now significantly used to "help" kids comply with their ABA programs). I'm proposing there are other possibilities, and those possibilities come from us.

I'm not quite sure what "severe autism" means (range of intelligence? general impression?) and I don't know how old your boy is, though after four years of the Program, he must be at least six.

The problem with ABA is that it requires an autistic to learn "normally" (this is the learning-to-learn error), which is called explicit learning. Autistics, from the evidence (some of which is in the science, some of which is being worked on) learn implicitly. It is very, very hard for us to learn the way ABA teaches. That's why lots of kids blow up (self-injury when being taught to brush teeth, eg). That's why it takes so long, and such small increments, and why gains do not generalize and are so hard to maintain. ABA is only seen as the one way we can learn because the way we *do* learn, and learn in exceptional ways, is written off.

There is a pretty good and very strong discussion of self-injury on the comment board I described above. I think it's circa post 400 or so, though mentions of self-injury are present throughout and may be helpful to you.

I've written quite a lot about the ability some non-autistics have of noticing an autistic's abilities, including when those kids are diagnosed autistic and profoundly retarded (under 20 IQ). In research I'm involved in, we found non-verbal, very "low-functioning" kids who were near the top in a particular test. What was fascinating was that this test is supposed to require, as it progresses, verbal skills. This test also requires that the person learn as she goes. No one teaches autistics to do this, but they figure it out anyway.

There's lots of discussion on the comment board above, again, about the use of materials, and the necessity of materials in implicit learning, and the importance of NOT respecting the usual order of development, and NOT respecting the materials appropriate for any one developmental level. If you want to know more, please ask.

One of the points I've made repeatedly is that we *do* communicate, and the most successful "strategies" involve responding to our communication, rather than ignoring it and working extremely hard to explicitly teach and drill the "right" (you would say "appropriate") kind of communication. From experience, when someone responds to something I've communicated (rather than to what they believe I've communicated) I am tremendously grateful, first, and second, I make great progress.

I've also written often that having language or even standard-issue speech does not solve the problem when you are autistic. The same communication problems keep on happening, regardless of the huge effort involved for us to produce speech. It seem that *what* we need to communicate, which is based on our differences in fundamental areas--perception, attention, memory, intelligence--is also wrong or "inappropriate". This is where intolerance impedes communication and learning.

I object also to the idea that everything has to be broken down in little pieces. jypsy, where are you? (she does this argument much better than I do). Autistic learning is often a stupendous thing--even in an old person like me. Assuming that everything has to be reduced to tiny increments because otherwise nothing will be learned is not okay. Were this the only way to learn for us, there would be no savants, no splinter skills, no peaks of ability--and in the lab where I work, peaks of ability belong to *all* autistics, as does the potential for extraordinary learning and achievement. This is no "miracle", it's just in the science.

So in your program, you risk missing potential which is there, given your assumption that the best that can happen is a kid who is kind of functional in an "appropriate" way. You would be maybe shocked to find out how old I was when I learned some basic self-care skills, and how many of these skills I still lack. My own priorities were elsewhere and continue to be. I'm not going to back off from the work I do to take my entire effort to learn basic care of myself. The reciprocal view of this is that I don't expect non-autistic people to be able to learn the way I do.

I don't believe in or promote a specific "program", and I don't believe that autistics require heroic interventions just because we are autistic. We do need very different kinds of help from non-autistics, and that remains true all our lives. In some areas we need more help and in some areas much less.

NOBODY takes care of themselves without any help at all. We are all dependent on each other, autistic or not. As has been pointed out many times by people smarter than me, everyone requires assistance throughout their lives. It's just that the kind of assistance you require (and often I don't at all) is provided without question as of right, whereas the kind of assistance we require is seen as evidence that we are terribly defective and must be either rectified or institutionalized.

Thanks again for writing.

Michelle Dawson
naacanada

Michelle(and other participants)
I am a mother of a child diagnosed with "severe autism" who attended the proceedings at the SCC.

I have a great deal of respect for your position and would have to agree that your point is much clearer in the written work than that presented at the SCC yet I did understand the point your counsel was making.

I am however at a loss as to what your recommendations would be to parents of children with Autism. I do not agree with you that the parents/parties represented in the submissions at the SCC have "written off their children or would write off their children in the absence of ABA/IBI treatment"

We have run a homebased program for my son for almost 4 years now. The purpose of this program has never been to make him "normal". It is to teach him how to communicate his needs, to teach him life skills to improve his quality of life, and to insure his safety and the safety of others. For example, without the use of ABA strategies, how would you recommend a family handle self injurous or violent behavior when you are attempting to teach your son to brush his teeth. Utilizing the principles of applied behavioral analysis, breaking down the task and providing reinforcement for each step gained has helped my son to achieve age appropriate self help skills.(reducing behavior through the use of medication or physical restraints/adversives in my humble opinion certainly is debilitating, degrading and clearly a violation of their rights).

 Teaching him appropriate communication strategies(he is nonverbal and just learning how to print and hopefully read)so he can express his needs is our main focus.

We decided to have a family later in life and have no family supports who can care for him should something happen to us. My biggest fear IS NOT THAT MY SON REMAINS AUTISTIC but that he will have no CARING support to meet even his basic needs if he does not acquire fundamental communication and self help skills in the time I have left.

I have never had the pleasure of meeting you Michelle and have no idea how your life has evolved. I can only hope that one day my son can communicate.."Mom, I can take care of myself and I do not need your help." (using any appropriate form of communication)

That is the reason I need to continue our program with my son. I do not need to make him something different but I do need to do everything in my power to ensure his safety and care. I believe that to be my "core responsibility"

I can guarentee that ABA/IBI has helped him. Could he aquire these basic skills over time without this support....perhaps but as his parent can I take that chance and hope for the best.....I think that would not be in my son's best interest.

Thank you for your time. Thank you for also reminding all of us what we need to be to our children and ourselves.

Sincerely

Deborah

Sarah, I've heard some good things about sun-rise, can you tell me more about it?

Although, I haven't been able to go through and read the whole text of your case; I applaud you for what you are doing. My fiance has Asperger's Syndrome, and I love him just the way he is. He never had any form of therapy as a child, or even when he was diagnosed at age 15. I hate to see people go through crap of this sort just for society to for once, stop and think; and 3/4 of the world to get their heads unplugged from their backsides.
I currently work with a home based program that's called the Son Rise program, with a 6 year old autistic boy. When I first was asked to work with him...I had no idea what program his mother was using, my first question was, " it better not be anything ABA oriented or I won't even bother." I enjoy working with him everyday I can. My favorite thing we do together is when we throw stuff animals up in the air together, and watch them drop. :)

I hope you will continue your fight, and I will watch your page for updates.

Sarah

Having read so far all this stuff, I am of the opinion that these bastards want us ALL to go and kill ourselves: they're too yellow to do it themselves, and they can't stand that we're alive. So, if they do nasty things to us and sideline us completely, that will do just fucking nicely: we get to feel like shite wi' shoes on and we go and kill ourselves.

I have known a couple of autistics who have done this. I was very nearly one myself. I know of many more.

Justice my fucking arse.

The decision of the Justices will have a large effect on all other Canadian cases, and there are more than a hundred in Ontario alone. These cases vary in their parameters, with many of them being re treatment over age six.

One of the Auton interveners, the Friends of Children with Autism (FOCA), is an Ontario pro-ABA group trying to win a bunch of over-age-six decisions. Their position at Auton, according to their lawyer, was to ask the Court *not* to make any decision re any kids six and over. This is a deffensive position, meaning they don't want their cases ruined by a Supreme Court decision, and has some facts going for it. The issue of treatment after age six was mentioned in the previous proceedings but was never properly examined, regardless of the decisions made.

I don't know what effect a decision in this Court would have on other countries. The fall-out in the US would be hard to figure, since the case in Canada is based on "medically necessary" services, which should be covered under Canada's "universal" health care system. In the US, the fight has been school district by school district as an educational issue. I'm not sure how the UK cases have been argued. I read news reports of one a while back and it wasn't clear.

The overwhelming consequences of deciding the division-of-powers issue (do courts or governments allocate public funding?) in Canada is likely to overshadow the specific decision about autism in the Supreme Court judgment. The parents' lawyer very diligently tried to avert this emphasis by making as small and specific case on the evidence as possible. He would have done much better had he not been so absolute in his condemnation of all autistic people not treated by ABA to deterioration and doom.

The more controversial elements in the parents' case were very obviously farmed out by the parents' lawyers to the pro-ABA interveners, including Autism Society Canada.

If the judges decide not to allow state funding for ABA, will this have resonance with the rest of the world?

I really want people to start asking why Autistics are standing up snd speaking out against ABA.

"Law isn't for the minority."

From my factum,

"“The Charter is anti-majoritarian. It cannot be that the entitlement to the benefits of s.15(1) is subject to the majority views of the electorate or that it is somehow dependent on evolving social and political views.”

Hislop v. A.G. Canada, [2003] O.J. no. 5212, at para 78"

This was the decision that gave legal status to same-sex marriage in Ontario.

Hi Ralph...

>Or maybe I'm expecting too much of our highest court?

Might be expecting too much.

Law isn't for the minority. Never has been. never will be.

This is why I see myself as an anarchist.

Michelle:

In this case, he had the last word and I found that very hard to take. I am still finding that very hard to take.

I'm thinking the Supreme Court judges will have the last say. Trusting that they take their job seriously, and your intervention seriously, they'll have noted the difference between what you say and what your lawyer says. Yes?

Or maybe I'm expecting too much of our highest court?

This message originally posted here: http://www.quicktopic.com/25/H/4NqUrcUWgSE5R/m707

Hi Michelle,
I'm the same Philip who has been posting on the Misbehaviour of Behaviourists message board.
I'm sending you my whole-hearted and fervent encouragement and support for your appearance before the Supreme Court of Canada.

As a parent of an autistic child in London, England, I am coming a bit late into this discussion. I am currently looking to find a suitable school for my 10 year old son. I thought ABA was best. Having seen and read the material around Michelle Dawson, I feel amazingly enlightned.

Principles have been raised, my perceptions have been questioned. Thanks Michelle, I think my son should help decide where he wants to go to school. Living in a happy nurturing home environment is what he needs, which my wife, daughter and I can provide. I shall be more (proactively)defensive of his right to be himself. It is true that society should accept difference and not impose "normal".

Edited by author 04-23-2004 02:10 PM
Dear D L Pugsley,

>Coming from my viewpoint as a parent of a child who developed symptoms of autism suddenly and severely, I don't see how Michelle Dawson can say both that the nature of autism is unknown, and that "Autism is intractable the way homosexuality is. As homosexuality is integral to the homosexual, autism is integral to the autistic."

*Think about it.

>When untreated PKU can cause autism, when congenital rubella can cause autism, when researchers believe that it often takes both a genetic susceptibility and an environmental trigger- how could it be wrong to prevent autism?

*They don't "cause autism": they bring about, in some children, autistic states. For some reason, science has acted as if trait theories are proven correct when, in fact, they aren't. It would be wrong, in my opinion, to "prevent autism" on the basis of calling it a disease; we could, of course, begin to see it as states of mind and behaviour based on a child's (or an adult's) appraisal of his or her psycho-social and psycho-physical environments. These would involve understanding autism from the Lewinian viewpoint (i.e., his famous equation B=f(P,E)... behaviour being a function of both person and environment variables and the interface between them). If, then, autism was classifiable as a disorder, it would be necessary to include (as causal factors) everything and everyone in the "affected person's" environment as well as how the person appraises his or her environment with a view to interacting with it. So far, despite claiming to be scientific, the "scientists" working in this field have failed entirely to do this, preferring instead to pathologise the individual. This is what I believe Michelle Dawson to mean when she says that the nature of autism is not known, but that it is integral to who the autistic person is.

>And if not, then why would it be wrong to undo it?

*The ethics of any therapy and counselling organisation should take something like this into account: invariably, they do not. If a person has a set of P-variables (as per the Lewinian theory) which would predispose that person to reacting to stress in a way which has been defined as "autistic", then we cannot see a way of eradicating the autism in the sense of it being a disease, and we can see a way of eradicating the conditions (or at least significantly reducing them) in order to eradicate (or at least significantly reduce the incidence of) the so-called challenging behaviours that may occur in stressful situations, and still leave the things that make the person who s/he is as they are. This is not autism treatment; nor is it autism cure; nor is it autism prevention; and this is because there is no such thing (in any physical sense) as "autism" (in the same way as there is, for example, haemorroids). (See my article for the British Medical Journal, "Trying to find biological cause for autism does not make sense"; http://bmj.bmjjournals.com/cgi/content/ful...etype=1,2,3,4#resp1)

>When my son lost both speech and motor skills, the doctors told us that it was called autism. I would undo those changes in a heartbeat, if I could.

*Did anyone actually look into the many factors that could be involved in causing such a skill loss? Diet? Even the expectations of people around the child can lead to problems if they fail to talke into account the person involved... what was being expected of him? What had you been getting right up to them that suddening wasn't working in promoting his development? A good psychologist would try to ascertain all this, and without implying that you, as a parent, were responsible for the skill losses.

>Before and after autism, he's still the same soul. It's a part of who he is because it's shaped who he's become.

*Autism is NOT like cancer or haemorroids; it is not something that you can take away from someone and leave the personality (such as personality actually exists; and we have no guarantees on that one) intact afterwards (like one can with the vast majority of operable cancers).

>In my interpretation, that's not what Ms. Dawson meant by "integral", and I respectfully disagree.

*Disagree all you like, provided that your knowledge is based on proper scientific understanding, and not on prejudice (such as the - readily apparent, in my view - prejudices of, for example: Kit Weintraub, Lenny Schafer, James Mulick, and so on). Disagreement is de rigeur in science. Real science. Not the charade of "science" promoted by organisations such as ASAT, who cannot accept anybody disagreeing with their ideas... and who, therefore (and I refer here basically to the likes of Mulick in particular), have to maintain ego-strength by disparagement of the person who disagrees (usually involving ad hominem attack, rather than on the basis of anything scientific or rational) in order to make a downward social comparison; e.g., Mulick, in the Schafer Autism Report: "Malingering comes to mind. Personality disorder comes to mind." Or "... lived off this status..." - all of which are very harmful things to say, and none of which were justified in the least.... and, given that Mulick is a trained professional psychologist WHO SHOULD KNOW that such comments would be harmful and baseless, he had no reason whatsoever to make them, except to denigrate Michelle since he could not actually argue against her science. He behaved entirely unlike a scientist practitioner, and I cannot really see his opinion being worth much if he cannot argue his point without stooping to ad hominem nastiness. For this reason, I can do nothing else but decry him as a psychologist: he is no psychologist (APA recognition notwithstanding), and is not a real professor if all he can do is to "slag someone off", and behave otherwise outwith the standards of professional decency (as he did regarding Michelle's diagnosis), as he most clearly did in the Schafer Autism Report. DL (sorry, you did not give your name), there is a difference between the way in which Schafer, Mulick, Mayerson, Weintraub and others in that vein have reacted and responded to Michelle's work, and the way in which you responded. You have clearly read it and thought about the substance of it, and its implications; you have then come back and said, "... ah, but..." - and this is a most welcome type of response... based on the topic under discussion and not on person-bashing (as you yourself said, "... respectfully disagree"); and that kind of response is always welcome in discussion with me (and possibly with the other autistics who post here). And I thank you for your input. Because it made me think about my own stance on this matter. And because it does that, it makes me a better professional. And I feel that professionals should ALWAYS be guided by the experiences of the people they end up dealing with. Unlike "professor" Mulick, who doesn't seem to know how to do anything with Michelle other than to make horrible personal attacks on her.

David N. Andrews
BA-status, AEPiT (Univ B'ham)
Psycho-educational Consultant, Applied Educational Psychologist,
Kotka
Finland
http://dna1fi.tripod.com/intropage/
Associate Editor (Finland): Good Autism Practice journal
Chairperson: Autistic People Against Neuroleptic Abuse political pressure group
Autistic husband of an autistic wife, and co-parent with her of an autistic daughter. And any personal attacks on me for this last one from ANY "DAN/CAN/etc-worthies" will be met with a well-justified ad hominem right back at them.

Edited by author 04-21-2004 02:15 PM
The discussion of the nature and treatment of autism, just like the discussion of the nature and treatment of homosexuality, should include a variety of people. I am aware that many people who are not autistic believe that autistics should not have a voice in our own future. I am aware that our voices have actively been censored.

All persons result from combinations of genetic and environmental factors. The integrity of these persons should be determined in consultation with themselves. Ms Pugsley would wish this for herself, I am sure.

Michelle Dawson
naacanada

Coming from my viewpoint as a parent of a child who developed symptoms of autism suddenly and severely, I don't see how Michelle Dawson can say both that the nature of autism is unknown, and that "Autism is intractable the way homosexuality is. As homosexuality is integral to the homosexual, autism is integral to the autistic." When untreated PKU can cause autism, when congenital rubella can cause autism, when researchers believe that it often takes both a genetic susceptibility and an environmental trigger- how could it be wrong to prevent autism? And if not, then why would it be wrong to undo it? When my son lost both speech and motor skills, the doctors told us that it was called autism. I would undo those changes in a heartbeat, if I could.

Before and after autism, he's still the same soul. It's a part of who he is because it's shaped who he's become. In my interpretation, that's not what Ms. Dawson meant by "integral", and I respectfully disagree.

Hi lg,

Thanks! That's very encouraging. I really appreciate you getting the word out. I hope everything went well (conference is today I guess?).

Michelle

Hey Michelle,

Am going to be at a conference in barrie ontario tomorrow.
am a woman with autism.
will be speaking there, and at the end of the speech, will be putting up resources.... for people to look up.
one section of the resources is titled "adults with autism who have something important to say"
and their websites.

This is the site that have up for you (re: supreme court) !

:)

lg

yes! this IS what have been waiting for.
As an autistic woman (single parent to two kids on spectrum) living in the underserviced Northern Ontario area... have found great encouragement watching from afar, as Michelle bravely marches forward.....
encouragement for self... to continue to fight the oppression that autistics face, not only with the general services provided to citizens, BUT even within the org. and agencies that SAY they are there to service the autistic population. When engaged in a 17 month long battle to acquire the basic supports that needed for us... looked for support/help/advocacy from the Autism Society of Ontario (local chapter AS well as the head office) and received NOTHING. Infact, was ignored.
then approached other autism related org. (such as Geneva Centre of Toronto) hoping they would advocate (like these places all say on their websites their 'advocate' for those of us with autism).. they did NOTHING.
Looking for help, nationally, didnt help either.

Infact, the BEST form of advocacy, and support, to GET something done.. came from other autistic adults... (and two non-autistic parents/grandparents of autistic kids)....
it is the autistic people who can speak for ourselves...
it is the autistic people who can do a MUCH better job of advocating and providing some meaningful support to others with autism.. because certainly the org. dedicated to donig this... are not doing their jobs... especially when it comes to adults with autism.

you GO Michelle!!!!!!!!!!!! SHINE that bright light of your intelligent/articulate mind in those dark places... that need to be revealed.


lg

I got (emotional) chills reading these legal documents. I especially got chills when I read of the doctor's high regard for Michelle's input into his understanding of autism. I am so impressed with Michelle's tenacity and desire to help. I am so happy to see her get some credit publicly for her great ability to communicate the autistic point of view.

oddizm - adult with an autism spectrum disorder/Asperger's

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