TheASman, aka Joe, its good that Amy Harmon has written about the movement against a cure. It will at least allow those who never heard of such an idea to realise that we do exist.
I agree that its not Ad Hoc, but it must appear that way to an outsider.
I have heard the term curebies, but not often.
I believe there is a forum on the NY Times site to discuss articles, I'm going to take a look to see if there is any debate on this article.
(Very cute Brightman, can I have one for xmas :wink: )
I was thinking whether Amy Harmon got the impression that the whole movement is Ad Hoc as there are separate factions working alongside each other, but not together.
Maybe its in our nature as aspies and auties to form smaller groups and work within them, rather than everyone join one large group and work in that fashion.
It seems that is the way its working right now.
It would be good to have a unified agreement between groups, like a common declared goal, some basic points that we all agreed on and a basis for a "mission statement".
If there could be a statement on all relevant sites about views on a cure, therapies, education, or whatever was thought to be relevant, it would carry a strong unified message.
Does anyone have any ideas on how to formulate such an agreement, or feel like asking relevant sites whether they would be willing to try it?
To find some common ground?
"If this form of advocacy in any way, shape, or form causes parents to ignore or shy away from the help that we know is available," he said, "I believe that their child is going to suffer."
On the other hand if this form of advocacy causes people with autism to feel like worthwhile people in the world who arent weirdos to be shunned, and have an intrinsic self value its bloody marvellous!!!!!
"There are no treatments that change whatever the root causes of autism may be. Nor are there ways of changing the world to make it kinder to our children. What we can and must do is to use proven and humane therapies like Applied Behavior Analysis and encourage research into other treatment methods."
There are ways of changing the world to be kinder, in the past there were no laws against child abuse and child pornography, they now exist. Also the many laws created in the western world to prevent child exploitation as part of the work force.
These laws do not exist in some countries and the tragedy there can be seen readily.
Law and legislation are one way to change things, the two recent cases of the boy refused access to his school xmas party, and the girl who was smeared with the diaper are two examples where strong and clear laws could be used against those who are abusive or discriminating.
Your are right Stella, it is an often used argument, that if we can actually have a website, how can we be autistic, if we can express ourselves at all, how can we be autistic, and if we have a group that isnt run by NTs, how can we be autistic.
Nem, I have seen that type of thing used by the cure league to prove their cures. They seem to use the natural improvement that can often occur for autistics to promote their cures.
i'm sure there are already a lot of people now diagnosed as AS/HFA who used to be LFA - problem is finding video footage
"I don't care if people with Asperger's syndrome want to remain different. I just don't them to keep children with real autism from getting needed help."
People accuse us of this kind of thing, but the facts are we can not stop anyone from doing what they want, we are just giving another point of view and expressing our own ideas, that isnt preventing someone from doing something at all. Knowledge is power for people to use at their discretion. Should we all only have the information churned out by NT parents sites, or have our own viewpoints expressed in the media too?
I feel that everyone should be helped with things that they want and need, such as instead of spending millions looking for a cure, actually having accomodation provided for autistic adults with nowhere to live and to give them some independence, that is one thing that comes up a lot on NT parents forums. Yet there is little or no funding for it, meanwhile the donations to supposedly help autistics are being given to research studies around the world.
Actually Stella, in the past people with ASD's could get Disability living allownace, but it is very difficult now.
For any new claims its made very hard, not just for those with ASD's but pretty much anything that isnt terminal.
Hi Kim, you said " Do you think that the government in Canada gave a toot about your agenda? They simply used Michelle and other HFA folks as pawns to make sure they don't have to pay for the one program that has shown improvement for these kids."
Michelle Dawson is a highly respected lady and member of the autistic community. To call her a pawn is to take away all the work that she has done and dismiss it.
She gave her viewpoint as a human being with autism, not as a pawn or puppet under the control of the canadian government.
This site is not based in Canada, I'm not sure if you know that or not, so I just wanted to make it clear, we are based in the UK and have members from all around the world.
Stella is absolutely right, there is a great deal of evidence about the harmful effects of ABA, in its history and up to the present day.
Some therapists argue vehemently about how they are kind and caring, thats nice, but ABA is unregulated and there are many harmful situations out there, the whole premise is one of altering the child's nature to enable it to reproduce NT behaviour in an artificial way.
Psychiatrists have to be regulated, teachers do, speech therapists do, ABA therapists arent, anyone could set themselves up as one, parents need to be very careful indeed. It means nothing for one practitioner to say "I do a good job", good for you, but would you let your child see an unregulated doctor or dentist, I know I wouldnt.
Kim, have a look at these comments on a site about ABA-
I am the parent of 3 boys with autism...my 9 year old had years of "aba" therapy and experienced the aversives and control mechanisms that it implies....he suffers from post traumatic stress from the entire experience.(restraint, barbaric behavioral interventions)....please include the risks involved with such an intensive controlling therapy that does not allow for self growth and emotional growth which is critical in most of these very young children who are lacking a sense of self and are not nearly ready for the "drilling" that a typical 3 or 4 year old could never handle .. it is not a miracle cure that it is being portrayed as.......please check out the book by Dr. David Holmes, "Autism through the lifespan""The Eden Model", a behavioral program in Princeton, new jersey...please read his section on aversives, and how he behaviorally deals with behavioral problems...., "tying children to chairs, making them sit, forcing them to do things...it is horrifying..... thank you for your time....even though i am sure aba has helped some children...it can be quite dangerous as well.....thank you
Hi Richard, I've spoken to you several times along this new journey (autism). You have been a great help. I wondered if I could run this by you ... I have a little boy 2 1/2 who used to love toys, certain foods etc. Since they have been used in his ABA program he won't play with these things or eat these foods. He is starting to develop hitting and pushing 'behaviors' every time a demand is presented or even a puzzle put in front of him. His therapy has taken a real turn for the worse. He spends most time running away from the table and tantruming and now he's doing this around the house when not in therapy. He never had these behaviors before but I think is learning effective ways to end demands so to speak and would rather run and stim than do any work. We are continually told how "non-compliant" he is ... but not WHY. Several times it was suggested we use "time outs" ... and for "nose picking" when he had a cold ... "nose spray" was suggested to use!!! Another time while teething and cranky it was suggested we "Take away his teether since that is the only thing he is reinforced by" ... all aversives I think!! I am scared for the behaviors I'm seeing. He used to be a very happy little boy who just needed a lot of teaching. Now he hates teaching and it seems US, his toys, his food... EVERYTHING. This therapy is changing behavior for the worse.
http://rsaffran.tripod.com/parents.html
This is a quote from the last link-
"
Ms. Weintraub's son, Nicholas, has benefited greatly from A.B.A., she said, and she is unapologetic about wanting to remove his remaining quirks, like his stilted manner of speaking and his wanting to be Mickey Mouse for Halloween when other 8-year-olds want to be Frodo from "The Lord of the Rings." "I worry about when he gets into high school, somebody doesn't want to date him or be his friend," she said. "It's no fun being different."
"You might have thought parents of autistic children were concerned with weightier matters. But note what Ms. Weintraub worries about: "quirks" such as her son wanting to be Mickey Mouse for Halloween, that somebody might not want to date him, and that he might be "different." All of this speaks directly to the themes Miller discusses in her books. I will state the obvious: Ms. Weintraub’s concerns are not concerns about her son and his well-being at all. They are statements about her own insecurities and fears. All the rest is window-dressing and rationalization.
Finally, think about the following. Every single one of the arguments used to justify "fixing" or "repairing" autistic children has been used in the past with regard to other "illnesses." I myself heard all of them as a teenager in the 1960s coming to terms with being gay. As I've discussed before (here, for example), I was even encouraged to undergo electroshock therapy, to "cure" me of homosexuality and make me straight. That way, I wouldn't have to worry about not having friends or having a date (at least, with a girl), or being "different."
I declined that offer -- and I am thrilled to see these children and their families resisting the calls that they be "cured" in much the same way. The extent to which our society -- nominally dedicated to individualism and personal freedom -- demands that everyone be essentially identical and cut from the same mold is astonishing. And the costs of all kinds exacted by those demands are terrible -- and the greatest cost is the destruction of the genuine, authentic person, even if it is a person who has tics and other behaviors that make "normal" people uncomfortable.
I had thought that, in certain ways at least, we had reached the point where we were beginning to celebrate our differences, rather than viewing them with suspicion, condemning them and always trying to "repair" them. But this story shows yet again how far we still have to go -- and how much damage we inflict on innocent victims in the meantime."
http://hnn.us/blogs/comments/9171.html