tag:blogger.com,1999:blog-8353442983052145851.post6035239349325131715..comments2024-03-14T18:26:18.208-07:00Comments on autism's gadfly: John Robison resigns from autism speaks and invokes Harold Doherty's "royal we" jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-8353442983052145851.post-1187461244020854352013-11-14T21:38:52.548-08:002013-11-14T21:38:52.548-08:00Roger - Please do ask Autism Speaks to put you on ...Roger - Please do ask Autism Speaks to put you on their advisory board. I think that would be great! They need someone who understands what it is like to actually have autism (or be autistic) and experience bio-medical treatments! High profile schmofile! I want you on that board! Shantihttps://www.blogger.com/profile/11323636965254272203noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-8051019932370407832013-11-14T21:20:28.836-08:002013-11-14T21:20:28.836-08:00Good points! the blogesphere went nuts with paren...Good points! the blogesphere went nuts with parent blogs that were offended by Katie Wright's piece calling her dangerous and misguided. Mainly they were saying "This is not our autism." Fair enough, not everyone experiences autism as she describes in her piece. However, When the happy, feel good stories come out in the media, there is no expectation that there be a footnote saying "Results not typical" or "Many people with autism have lives far more challenging than this piece represents." They are not offended at the misrepresentation under those circumstances. Your piece adds another point for the "You do not speak for me" crowd. John Robinson if Katie Wright doesn't speak for families of autistic children, then you can't speak for people with autism. Good riddance John!! Shantihttps://www.blogger.com/profile/11323636965254272203noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-44554616095484838762013-11-14T19:00:34.600-08:002013-11-14T19:00:34.600-08:00Those are a couple of interesting points about Rob...<i>Those are a couple of interesting points about Robinson,but why would he accept a position at a foundation who is devoted to curing or treating autism?</i><br /><br />That's a good question. I'm not sure of the answer to it, but I can speculate that probably part of the reason was he felt that it could generate publicity for him and improve his book sales, not to mention his speaking fees and engagements. From what I understand,(though I'm not certain) he makes an income well in the six figures from speaking fees alone. <br /><br /><i>Again,what is he doing on the IACC,when they are all about finding cures and treatments for autism?</i><br /><br />That's also a good question that I'm not certain of the answer to, but I suspect from Robison's POV, again it helps improve his public image and bottom line. He may actually have some good intentions and feel that he can change the IACC and the <b>stated</b> with emphasis on stated government policy of combatting autism and curation. As far as the government is concerned, it is just typical government incompetence and bungling and not really having to answer to. The same thing is going on with the affordable healthcare act and the abysmal roll out and website. These things IMO are better handled by the private sector and I don't believe the IACC should exist (though organizations like AS admittedly have not done much better)<br /><br /><br /><i>I think I'll go over to his blog,and ask him this</i><br /><br />excellent idea. He states that he gave up on dealing with me because of my constant criticism of him. Hopefully he would not feel the same way about you and I hope he gives you some good answers. jonathanhttps://www.blogger.com/profile/14972394536850151087noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-9816031767680867302013-11-14T18:04:25.107-08:002013-11-14T18:04:25.107-08:00" We do not like hearing that we are defectiv..." We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.'<br /><br />"We" are the high functioning that can understand words and emotions,"We" are not the ones that rely upon the state and the good intentions of others,"We" are not the ones with little language and no bodily function control, "We" are not problems for our parents or society because "We" aren't autistic.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-88392887498611638152013-11-13T22:58:49.439-08:002013-11-13T22:58:49.439-08:00Roger, you can contact autism speaks and inquire a...Roger, you can contact autism speaks and inquire about being on a scientific advisory board. If you completed the tenth grade in school your educational qualities are superior to his.<br /><br />The problem is, as you said, you are not a high profile person with autism. Autism speaks is most likely interested in being associated with celebratory autistics like Robison, who, in their perception, might improve their bottom line and help get donations. <br /><br />Most parents of autistic children are too busy to read blogs. They are busy fighting for services and treatments for their children. If they had read some of the stuff about Robison implying he knew what was better for their kids than parents did or his comments that only an autistic person should decide whether to receive treatment and their parents should not decide, their knickers would have undoubtedly been in a twist and his association with AS would have be a liability and a detriment to them instead of an asset. <br /><br />However, Robison does have his fan base and I guess he may have helped bring money into the organization. <br /><br />I'm really not in favor of non scientists serving on those boards, but I know how you feel and I feel the same way. <br /><br />Unlike Robison, you and I actually have a dog in the fight and have a good reason for wanting science to advance to help people such as ourselves. <br /><br />I wish you luck in any future endeavors you might have, but don't count on a warm reception from anyone at Autism Speaks as far as being on any advisory boards.jonathanhttps://www.blogger.com/profile/14972394536850151087noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-76700515196053058242013-11-13T11:58:09.217-08:002013-11-13T11:58:09.217-08:00How could anyone seriously believe 'charities&...How could anyone seriously believe 'charities' such as Autism Speaks are really all about curing autism, as 1 must ponder the possibility of those such 'charities' of un-official channels to do the research for Uncle Sam for purposes concerning war & enemy neutralization, as it has been alleged the late Hugo Chavez of Venezuela died due to some kind of biological warfare. All those charities funded by the government are really thinly disguised agencies for which the U.S. government can do its diabolical research @ minimal or no cost for itself. I bet you 10-1 the government knows surely far more about the causes of Autism & a bunch of other diseases & disabilities, or even their alleviation than they are letting on. Uncle Sam doesn't care, the american medical system doesn't doesn't care, nobody cares. Anonymousnoreply@blogger.com