Friday, January 19, 2007

Autism Speaks Wants Your Feedback (NOT)

CONFIDENTIAL. (No, just kidding).

Autism Speaks officials are probably too busy to solicit feedback on Roy Richard Grinker's "Unstrange Minds" from the Autism Hub. But I'll help them out. You can email editors@autismspeaks.org with your feedback. Even if you haven't read the book, you can give them your impressions on the "epidemic" idea, or your reactions to reviews of the book such as this one by Kev, or this one by Arthur Allen. (No big deal; EOHarmers probably haven't read the book either).

Autism Speaks has hired conspiracy theorists as consultants. Any chance they will hire, say, someone on the spectrum any time soon? I won't hold my breath.

I hear Autism Speaks' web presence has been declining for some time. I wonder why that might be.

59 comments:

  1. Who do you think should speak for those Autistic children who have severe intellectual and communication deficits?

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  2. If Amazon doesn't deliver that darned book so that I can read it soon I might snap a garter.
    Kristina Chew has a great review of the book on her site.
    Cheers dears

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  3. NB: You mean, like my son? I'd certainly hope it's not conspiracy theorists. Autism Speaks has no business speaking for my son. I'd much prefer autistic adults, if anyone, to speak for him. But in fact, autistic adults are more often than not adamant in their clarifications about them not speaking for anyone but themselves. Autistic adults are not the ones who proclaim to speak for all autistics.

    If Autism Speaks wants to get its act together and be relevant, they should start by hiring an autistic adult to their board.

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  4. Here's a link to Kristina's review.

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  5. "Who do you think should speak for those Autistic children who have severe intellectual and communication deficits?"

    Not someone who glamorizes the thought of killing them.


    "If Autism Speaks wants to get its act together and be relevant, they should start by hiring an autistic adult to their board."

    Why is this so bloody hard for some to understand?

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  6. "CONFIDENTIAL. (No, just kidding)."

    Oops

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  7. Re: Confidential - ooops

    Can't you just see how many of the conspiracists were doing the Macaulay Caulkin, Home Alone hands-on-the-face, mouth-agape thing when they realized what Heidi Roger had done?

    Will they ever trust Heidi with "confidential" stuff again? Oh, the drama!

    E-mail is scary stuff though, gotta be careful with which buttons you hit. Bob Krakow sent a message to the EoHam list that was supposed to be private. He resigned from the list (apparently) in shame.... but he came back a few months later. Recently he compared Grinker to a holocaust denier. Amazing.

    Fudenburg recently popped up with some comment about measles, too. I guess he hasn't heard.

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  8. All I can say is the last time I saw Ms Rogers, it was at a CAN fundraiser planning meeting----to sell tickets at Medieval Times, a certain entertainment center in New Jersey-----I left early. The tone was decidedly not upbeat.

    Thanks for the link, Joseph!

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  9. i believe that it is wrong to imply that Autistics who have "severe intellectual and communication deficits" can't and never will speak (in the metaphorical sense if not the physical sense) for themselves. i would hate to think that people would be so pessimistic about their own kids...
    especially as there are more things that are communication than only voicing and writing.
    even the "most severely" autistic kids do some things that say loud and clear "here i am and this is who i am. see me, hear me." i am not a parent but i have read parents write about this on their blogs and i have read "severely" autistic adults STILL trying to get people to understand that they are THERE, HERE, PRESENT, human, alive, awake and aware.

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  10. Joseph;

    I don't subscribe to the conspiracy theories and I don't believe the science supports the thimerosal ass causes of autism theories. But I also don't think that autistic persons who can discuss complex issues and compose complex passages have the same realities to deal with as autistic persons with very little language abilities. Nor are they are enitled to speak on their behalf.

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  11. bazooka joe

    see my prior post to joseph. what are you talking about anyway? I have never read anything anywhere on the internet or in any publication where anyone glamorized the thought of killing autistic persons. Do you have a link to a source where someone did?

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  12. natalia

    I am a parent of a 10 year old boy who I love very much and who is severely autistic. He has very limited communication skills but I have worked very hard to improve those skills so that he can have more tools to function with in the real world.

    Do you really think that all the parents who talk about the severity of their childrens' autism disorder are simply making it up? Do you really think tha we don't care about our children?

    As parents we deal with reality of our own childrens' conditions, not the opinions of those on the internet who know nothing of our children and who have no part to play in caring for and trying to ensure our childrens' development to the best of their ability.

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  13. But I also don't think that autistic persons who can discuss complex issues and compose complex passages have the same realities to deal with as autistic persons with very little language abilities. Nor are they are enitled to speak on their behalf.

    But do you believe an organization composed entirely of non-autistic people, whose officials presumably have no impairments of note, is entitled to speak on their behalf?

    I think it would be tough to find a group of adults who can precisely represent children, in any subset of humans.

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  14. I have never read anything anywhere on the internet or in any publication where anyone glamorized the thought of killing autistic persons.

    You've never heard of the Autism Every Day video? That's just one instance. I've seen others claims to the effect that is is normal for parents to want to kill their autistic children.

    I doubt there's any other disability community where such damaging and horrible views are expressed publicly.

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  15. I think that it is good to have higher functioning persons with autism participating in autism organizations. The Autism Society New Brunswick of which I am a director had a director who has Aspergers. That gentleman served with ASNB for several years and was a key member, offering his perspective and insight and keeping us organized. He also gave testimony before the Canadian Senate Committee on autism.

    But for those autistic persons with serious intellectual and communication deficits then someone has to speak for them, usually a parent or other guardian or caregiver. As the father of a severely autistic child, and yes, there are different degrees of severity, I speak on his behalf.

    I have never read anyone state that it is normal for parents to want to kill their autistic children. I have read of some parents who stated that they contemplated it because they feared what would happen to their children when they were no longer around to care for them.

    This was not someone saying ALL parents thought this way. Nor was it someone saying they WANTED to do that. Rather that they feared a life of institutionalization and abuse for their child, that some lower functioning autistic persons face, and they wondered what was the worse fate for their child.

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  16. NB -- in just the past year, several officers and directors of Autism Speaks have said that they believe it is normal for parents of autistic children to fantasize about killing them.

    You can find more information about the Autism Every Day video in Kevin Leitch's Don't Speak for Us petition (which currently has almost 700 signatures). In the video, Alison Tepper Singer, the senior vice-president of Autism Speaks, said (while her autistic daughter, who understands speech, was in the room with her) that she had thought about driving off a bridge with the child in the car.

    Autism Speaks has an ugly article in a similar vein on its website:
    autismspeaks.org/docs/Town_and_Country.pdf

    in which two board members of Autism Speaks, Harry and Laura Slatkin, said that they sometimes hope their autistic son will drown in a nearby pond and that they believe families with autistic children "all share that hidden, dark thought."

    Take a look... I think you'll be as disgusted as the rest of us...

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  17. Harold Doherty wrote:
    "Do you really think that all the parents who talk about the severity of their childrens' autism disorder are simply making it up?"

    No!

    "Do you really think tha we don't care about our children?"

    No!

    "As parents we deal with reality of our own childrens' conditions, not the opinions of those on the internet who know nothing of our children and who have no part to play in caring for and trying to ensure our childrens' development to the best of their ability."

    EXACTLY! So who do those Autism Speaks people think they *are* anyway??? What makes them think they know anything about my child's needs and development? What makes them think they know anything about my child's experiences and what he can achieve? What makes them think it's okay to paint all autistic kids in a negative light when they have never even met my child and don't even know he exists? Right, Harold?

    The *nerve* of some people!

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  18. "We'll post selected responses to the web site the week of Jan. 22." -from the Autism Speaks website in regards to their request for feedback

    Translation:  We'll post the responses that reflect our agenda and point of view.  The rest of you can go to hell.

    *SIGH*

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  19. Autismreality: I strongly suggst you watch this video which is made by an autistic woman who is considered (or was) low functioning, who does not use speech to communicate and used to be thought had a low IQ. She has been institutionalised on more than one occasion in her life.

    After you've finished watching that video, I would very strongly suggest that you watch other videos made by her.

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  20. anne

    I watched the Autism Speaks video. I saw and heard parents describing their own experiences with their own children. They were describing the realities of their family lives. I have had similar experiences. If you have not fine.
    But there are others who do.

    Do you recommend that parents not describe the realities of caring for and raising severely autistic children?

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  21. kev

    Thank you for the "strong suggestions". I saw nothing offensive in the Autism Speaks video. I saw parents hugging and kissing their children, describing the fear they felt when a child ran into traffic, describing the realities of the financial and emotional costs of raising their children. That caring and loving commitment to their children is the context in which any statments that you found offensive were made.

    I love both my sons including my youngest with autism disorder greatly. But many of the financial, physical and emotional costs described in the Autism Speaks video have been experienced by me, my wife and my non-autistic son. That is a fact.

    My wife and I do worry about what will happen to our son when we are no longer alive. We have worked very hard to ensure that he learns and develops to the best of his ability but he is almost 11 now and, short of a true miracle, he will require the care of others when we are gone. That means institutional care.

    I am happy for autistic persons who can communicate as the lady in your video does but there are many others who can not. That is a fact. There are many autistic persons living in mental health institutions. That is a fact. I have been actively involved in our provincial autism society and have visited the central mental health facility in our province with the father of an autistic man who is now in his mid-20's. It was not pretty. But it is a reality. Deal with it or not that is your choice.

    I, and parents like those in the Autism Speaks video, don't have a choice, we have to deal with the reality of OUR autistic children, not the good fortune of some autistic persons who have good skills. It is unfortunate that you see so much negative in the words and actions of parents who obviously care greatly for their children.

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  22. Often when autistics do speak, folks like Mr. Doherty censor us so we cannot be heard. On his blog, his list etc. Why is that?

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  23. Mr Doherty also censors those of us who are helping our children by removing mercury from their brains. I wonder if he'll tell us who will speak for the special ed. teenager who was killed by another teen with Asperger's yesterday in Massachusetts. Would that murder have happened if that boy had been chelated?

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  24. "jypsy said...
    Often when autistics do speak, folks like Mr. Doherty censor us so we cannot be heard. On his blog, his list etc. Why is that? "

    jypsy

    You are not being totally up front about this. I have posted several times on my blog site and discussion news groups. You didn't mention that in your post. And I have explained that I expect posts to address issues not personalities.

    Do you have a link to my blog site or news groups on any of the web sites you publish? Or to anyone who does not share your point of view?

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  25. fore sam

    I operated my blog site as a moderated site. I do so to ensure that posters try to address issues and not personalities. Your posts do not comply with that requirement.
    I would not permit name calling such as calling people "monkeys" on my blog site even though I disagree with their views.

    I don't share your belief in thimerosal. There is simply no scientific support for that belief.

    I do share your views about the irrationality of the natural variation/neurodiversity/joy of autism perspectives but I would not describe someone as a monkey simply because they hold those views.

    Have a good day.

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  26. A couple points...

    Autism organizations should hire autistic adults, but not just adults with Asperger's. They should try to find adults with diagnoses of Autistic Disorder and PDD-NOS. I think this is doable. They should not do this just to have a token autistic either.

    Clearly, Autism Speaks is not an organization that is moving in this direction AFAICT.

    Also, no, parents don't have to keep quiet about the realities of living with an autistic child. But some caution is called for in regards to the manner in which they do that. If they suggest that planning the murder of autistic children is an ordinary occurrance in the autism community, this will have a terrible impact in the lives of all autistic children. (And it won't magically bring about a cure either).

    Again, one way to tell if discourse is overly negative and stigmatizing is to consider if it would be appropriate to speak of any other disabled minority in that manner.

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  27. Kev, I've never been officially thought to have a low IQ, just to have some mysterious but severe developmental disability. However, unofficially most people think I have a low IQ until proven otherwise.

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  28. jypsy

    You are not being totally up front about this.


    Ok, let's be

    I have posted several times on my blog site and discussion news groups. You didn't mention that in your post.

    Do you mean you have posted *my* posts?
    If so, yes you have, less than 50%. I see that as censoring me - there are many posts you simply ignore. No explanation, no nothing.
    You have accused me of "personally attacking" someone because I used the word "misinformation". I asked your help in wording, you never answered. You will not work with me to make my use of language acceptable in your eyes.

    Why did you reject my posting of Dr. Roy Richard Grinker's new book "Unstrange Mind"?

    And I have explained that I expect posts to address issues not personalities.

    Where wasn't I addressing issues? You'll need to explain this as I'm just not seeing it.

    Do you have a link to my blog site or news groups on any of the web sites you publish?

    Are you aware of the status of "any of the web sites" I publish? Please tell me where is it you think I should list your blog or list on my pages?

    Or to anyone who does not share your point of view?

    Ok, just which web sites are you talking about?! You were never at my ABA page? My Mercury/Chelation Page? Again, you had better explain that one to me.

    I'm glad everyone you disagree with, on the many blogs you're commenting, on allow your posts. I'm glad you can discuss these issues. I'm just sorry we are not afforded the same respect. I don't blame you for censoring name calling and general hate speech. But what's going on between you & me feels like plain censorship. Just how "upfront" do you really want to be sir?

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  29. Harold, Here's some science for you. Give a kid drugs that remove mercury from the brain. When the kid begins to improve from a total zombie so that he starts to interact with people and all sorts of other good things happen, it is reasonable to conclude that the mercury removing drugs have had some effect. Ergo, mercury caused the problem. The science is that simple. You must be listening to too many "experts" who don't want to admit the obvious.
    I think it's fair to portray anyone who causes harm to children by touting a ridiculous agenda in the most unflattering manner possible. You can give these sorts some respect if you like. I won't.

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  30. "I, and parents like those in the Autism Speaks video, don't have a choice, we have to deal with the reality of OUR autistic children, not the good fortune of some autistic persons who have good skills. It is unfortunate that you see so much negative in the words and actions of parents who obviously care greatly for their children."

    In that respect, our lives are no different. You do people a grave disservice when you attempt to drive a wedge based on your opinions regarding other peoples perceived abilities.

    You state you want to see a film that describes the reality. Me too. 'Autism Every Day' is not such a film. It shows manipulated situations (by the admission of its producer) and describes no positivity at all. Is that how you would describe your lives? Devoid of any happiness at all? Why didn't 'Autism Every Day' portray this aspect of life if it is so intent on showing the reality?

    This film contains an invitation to feel pity for someone who describes their desire to murder their autistic child. This person claims that what stopped them was the thought of their NT child. The producer described this section as 'gutsy' and claimed all parents of autistic kids felt like this. This is also not 'autism every day'. Do you harbour a desire to kill your autistic child? I know I don't.

    You seem to have missed the point about the videos I asked you to view. How old is your child? Do you feel it is better for an organisation who indulges in misrepresentation and generalisation to speak for your child? How appropriate do you think it is for an organisation to call itself 'Autism Speaks' when they have no actual autistic people speaking and when they infer that its OK to indulge in casual (and not so casual) thoughts of violence towards autistic people?

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  31. Amanda - apologies - bad memory chip ;o)

    "Mr Doherty also censors those of us who are helping our children by removing mercury from their brains. I wonder if he'll tell us who will speak for the special ed. teenager who was killed by another teen with Asperger's yesterday in Massachusetts. Would that murder have happened if that boy had been chelated?"

    Its amazing just how utterly stupid you can make yourself look sometimes John. Really, really amazing. Are you now suggesting that autistic kids are murderers?

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  32. Do you have a link to my blog site or news groups on any of the web sites you publish? Or to anyone who does not share your point of view?

    Canadian Autism Resources (see New Brunswick)

    ABA Resources

    Mercury - Chelation - Vaccines

    I couldn't begin to count the opinions I disagree with on these 3 pages alone.

    I see the NB Autism Society there as well a as link to the NB list (the only one I was aware of at the time)

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  33. I won't delete Fore Sam's messages for now, but feel free to ignore him, everyone.

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  34. I'm sorry for my own comments here Joseph. This is probably not the time or place but sometimes my tongue slips out from between my teeth.

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  35. You don't have to apologize, Jypsy. I don't see a problem with your comments, and I don't see a problem with Mr. Doherty's comments either.

    It is someone else's comments that are difficult to tolerate.

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  36. Kevin, The Asperger's kid yesterday was a murderer. The question you try to dodge is how many more will there be due to you who celebrate the condition instead of fixing it.

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  37. "The question you try to dodge is how many more will there be due to you who celebrate the condition instead of fixing it."

    Right OK. Lets humour you for awhile.

    I promise I'll give you an answer if you can define the terms of your question.

    Are you suggesting that, 'uncured' autistic people are inherently more likely to be murderers?

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  38. jypsy

    I have posted several of your comments, particularly those giving notice of helpful events like the Dennis Debaudt workshops and related information. I moderate to have a discussion on the issues not on personalities.

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  39. A one-eyed black lesbian who limps1/20/2007 10:42 AM

    When he was the Prince of Generation Rescue, Kevin Barry of Autism Speaks signed up ForeSam/JohnBest as a Rescue Angel. BJ Handley, the King, has gone on record to say he supports JohnBest in his actions. So, is Autism Speaks a bigotted organization too? Does AS accept bigots like this Rescue Angel? What about the men who foster and support the bigotry?

    Hey Best, there are plenty of gay men who murder others. If you were to cure their homosexuality, would you save people from getting shot?

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  40. Kevin, Your penchant for twisting words never ceases to astound me. I'm saying the murder wouldn't have happened if the kid had been cured of Asperger's. I know you aren't concerned with preventing autism. Now that it is implicated in a murder, I think society would be much better off if it was cured. Why don't you tell us the joy these families are feeling now about autism?

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  41. joseph

    I simply do not agree that the Autism Every Day video stigmatizes anyone.

    If you visit my blog site you can find pictures of my son presented in a very positive light. But the reality is that he has injured himself and has bitten me and his mother. We understand his behavior when that happens but it is still very real. Like the father who wrote a letter to the newspaper in Virginia I too have been driving my car when my son grabbed by throat from behind a potentially very dangerous situation for everyone in the car. My son does not understand the dangers of busy streets and he has broken mirrors and windows with his hands as well as broken furniture. These are just facts. I can also state that every day with my son brings great joy, that when I come home tired from a hard day practicing law and see his face pressed against the window waiting for Dad it lifts my spirits and my mood without fail. When he asks for my help I feel like the most important person in the world.

    The whole picture of raising a severely autistic child includes the positive which can be very very good and the negative which can be very very bad. But as a parent when I am gone my son will require the care of others. And that care, in the real world, is not always provided adequately, caringly or with the intentions of those being cared for at heart. Parents such as me have to think of that reality.

    It is unfortunate to see people attacking parents of autistic children for describing some of the unpleasant realities faced by severely autistic children and their families.

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  42. Mr. Doherty,

    You have *not* posted more than half my posts. Show me one comment where I was not discussing the issues. How is posting the link to Slate & Arthur Allen's article constitute a discussion of "personalities"?

    And what about the other claims you made - about my websites etc. Will you answer my questions or ignore them?

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  43. I think John Best needs to duke it out with sigma666 who is saying that autism and asperger's are not related at all. I think I read that on D'oC's blog. Asperger's and PDD,nos are "autism" when it suits people like Lyn Redwood to say that they are the same. Her son has PDD,nos and she cries about how he was made "autistic" by vaccines. John Best Jr (rescue angel) style of bullying autistic people is more likely to cause an autistic to lash out than any amount of mercury ever could. I wonder if this boy's taunters were calling him "mercury toxic" or "poor smearer." We can thank the rescue angels and friends for smearing "autism" all this time for damage done to autistics beliefs about themselves.

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  44. I'm saying the murder wouldn't have happened if the kid had been cured of Asperger's.

    On what basis?

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  45. I am not going to engage in endless arguments with you jpsy. I also posted some of your comments and explained why I would not post them all.

    Have a good day.

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  46. John: You might want to compare notes with Paul Cameron.

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  47. Nor will you answer the simplest questions.

    I doubt your honesty as well. You & I both know the truth and those who know me know I can back up what I say. I not only keep every email, I email every blog entry to myself, those that pass moderation and those that don't.

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  48. John: "I'm saying the murder wouldn't have happened if the kid had been cured of Asperger's."

    Wrong, I'm afraid.

    The fact that he is Aspie has no bearing on his likelihood of killing someone. Non-autistics commit more murders than do autistics, schizophrenics and other 'special needs' individuals put together.

    Get used to it: your argument was not solid or based on fact... just a fantasy in your own head.

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  49. "I'm saying the murder wouldn't have happened if the kid had been cured of Asperger's."

    I see.

    So your silly question about how this poor family would be feeling about their child being murdered was really just to support a totally unsubstantiated opinion on your part that the killers AS played any part in the reason for the victims death.

    Celebrity Big Brother is on at the moment over here John. One of the contestants is a closed minded little bigot named Jade Goody. One of the other contestants is Jermaine Jackson. He said that it was pointless talking to Jade as 'you can't reason with stupidity'. It was good advice which I should've remembered before attempting to exchange logic with you John. I forgot you can't reason with stupidity.

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  50. "I simply do not agree that the Autism Every Day video stigmatizes anyone."

    And yet I know several autistic people who feel deeply offended and stigmatised because of that film.

    "My son does not understand the dangers of busy streets and he has broken mirrors and windows with his hands as well as broken furniture. These are just facts. I can also state that every day with my son brings great joy, that when I come home tired from a hard day practicing law and see his face pressed against the window waiting for Dad it lifts my spirits and my mood without fail. When he asks for my help I feel like the most important person in the world."

    Good for you mate. I know exactly what you mean on both counts.

    Didn't hurt anyone for you to tell people that did it? That you're proud of your son and can see the good sometimes?

    No ones thinks Autism Speaks should show a rose tinted version of 'Autism Every Day' my friend. We just don't see how showing an unremittingly negative one is either helpful or, as you've demonstrated, accurate.

    When situations have to be manipulated to make a point then we're no longer talking about a documentary, we're talking about propaganda. I don't want my daughter caught up in someone else's PR war.

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  51. Kev, That's right, sidestep the question with insults. Are these two families celebrating the joy of autism today?

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  52. Kev, That's right, sidestep the question with insults. Are these two families celebrating the joy of autism today?

    I thought your question was:

    how many more will there be due to you who celebrate the condition instead of fixing it.

    The answer to that question is 'zero'. It always was. I just wanted to demonstrate publicly once more the overwhelming power of your assholery.

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  53. Kev, So, I'm an asshole because the condition of autism produces unusual behavior?
    Will you be "adopting" this kid, Kev? You know, like you adopted the murdered kids, someone who celebrates the joy of autism should be adopting an autistic murderer too. I think you should plead his case since you are so sure this won't happen again.

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  54. No John, you're an asshole because...well, because you're an asshole :o)

    In this instance you're an asshole because you tried to make this incident about something it isn't. In other words, your assholery is evident in both your intent and execution.

    To put it another way, you're an idiot who's not really that good at being an idiot.

    Hope that helped :o)

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  55. Kev, Thanks for showing off your intelligence with your name calling.

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  56. "Kev, Thanks for showing off your intelligence with your name calling."

    This coming from a Rescue Angel from Generation Rescue who on his blog intimated that he had sex with an autistic woman and then labeled her a monkey.

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  57. I happened into some old email today from folks who took the time to write to me after visiting my website. I know, from what is in all those letters, the positive, real, effect that my more balanced writings of Alex's life with autism has had. I'm so glad I was able to give to so many autistics & their families.
    Just what does the Autism Speaks video *do* for autistics & their families? I mean the positive stuff. Seriously, anything anyone can offer? What are the video's fans saying? "This video is important because........"? "This video is helpful to us because......."?

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  58. "Didn't hurt anyone for you to tell people that did it? That you're proud of your son and can see the good sometimes?"

    Kev,

    I talk often about the good in my son. If you visit my blog site you will also see pictures of my son in a very positive light.

    But the negative aspects of his autism are what require attention from health, education and residential care providers (when we can no longer do so). That is why the parents in the Autism Every Day video spoke up. To get the help they need for their children.

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  59. That is why the parents in the Autism Every Day video spoke up. To get the help they need for their children.

    Did they get it? Is that the only "good" to come of it?

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