tag:blogger.com,1999:blog-8353442983052145851.post8164493532427033119..comments2024-03-14T18:26:18.208-07:00Comments on autism's gadfly: Autism speaks appoints autistic board members, pro-cure autists again scorned. jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-8353442983052145851.post-37314959366913844922016-06-30T22:21:35.488-07:002016-06-30T22:21:35.488-07:00Exactly. Many disabled people deny that there disa...Exactly. Many disabled people deny that there disabled because their too afraid to admit they have a medical problem. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-45445518131037792252016-01-05T20:46:25.418-08:002016-01-05T20:46:25.418-08:00@ anonymous 6:11 You're absolutely right. I ...@ anonymous 6:11 You're absolutely right. I suspect the reason Robison was picked was because there was pressure to have autistics in positions of power and he was a bestselling author and was well known. It certainly wasn't based on his scientific acumen or any other qualifications. jonathanhttps://www.blogger.com/profile/14972394536850151087noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-32196859482257540602016-01-05T18:11:50.692-08:002016-01-05T18:11:50.692-08:00Robinson (who dropped out of high school and had l...Robinson (who dropped out of high school and had little knowledge on autism science ) got onto the scientific advisory board!? Hey Autism Speaks! Pick me for the scientific advisory board! Yea, I'm study web development in college and not autism science, but I'm autistic! That's got to mean I'll do well with the job! Pick me! Pick me!<br /><br />In all seriousness, I don't get it why Autism Speaks would elect someone with no experience with autism science to the board. Just because he was autistic doesn't mean he was knowledgeable in autism science. My grandpa had lung cancer. Did that mean he instantly knew about the science behind lung cancer? No! Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-45156866249211531022015-12-08T23:50:39.488-08:002015-12-08T23:50:39.488-08:00Good thing about Autism Speaks is that they are co...Good thing about Autism Speaks is that they are concerned with <a href="http://www.conductmanagement.com/" rel="nofollow">Autism Spectrum Disorders</a> and to people who are struggling with this.Conduct managementhttps://www.blogger.com/profile/13772574427680886427noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-66899826582404586372015-12-08T20:40:17.783-08:002015-12-08T20:40:17.783-08:00Roger: While it's true your situation may be u...Roger: While it's true your situation may be unusual. I think it's unusual for autistic people to be able to get doctoral degrees and marry and write books and publish them. Two out of two autistic people serving on the board of directors of autism speaks have been able to do this. Three out of three have been able to marry and have written publishable work if you count Robison on the scientific advisory board. Most autistics will never be able to get married, get a doctorate or write a book and publish it. If they aren't too unique to serve on autism speaks' board then you certainly aren't either. <br /><br />I still wanted you on the board, but I realize that's not realistic given high profile autistics will be preferred over ordinary, every day people who have not achieved notoriety such as ourselved. jonathanhttps://www.blogger.com/profile/14972394536850151087noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-60346274850149359672015-12-08T16:05:36.267-08:002015-12-08T16:05:36.267-08:00@ Claudia Mazzucco, Curing human nature is somethi...@ Claudia Mazzucco, Curing human nature is something that's more truly improbable than finding cures for disability & disease, as people want the best for themselves & their children, as I also as well want the best kind of life I can for myself. To say people should accept disabled people as a peer equal is more akin to asking omnivore not to eat meat. To state people should do so otherwise is really a certain manifestation of Cultural Marxism. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-4404466945759399842015-12-08T15:31:38.434-08:002015-12-08T15:31:38.434-08:00I think this is a sign of further aggressive activ...I think this is a sign of further aggressive activism to come, as some figures in the autism community abandon earlier goals by letting such a turn of events unfold. The diversity crowd may say they aren't convinced or pleased with this change, but they know they're gaining ground, and want to keep applying their pressure until they have complete control over the issue. Their criticisms of Autism Speaks have the implication that this organization has power and influence over the lives of autistics, a power which the neurodiverse group would wield if they get control over it. They have no intention of just letting autistics choose cure, even as they make excuses to prevent cure from being devised.lurkerhttps://www.blogger.com/profile/14926254116447529725noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-28931002578985159732015-12-08T09:21:19.726-08:002015-12-08T09:21:19.726-08:00Actions speaks louder than words and as an ND guy ...Actions speaks louder than words and as an ND guy I have some cynicism I am pretty excited that there are two autistic board members at Autism Speaks. When I look at this in combination with the spate of resignations, the less negative/more positive rhetoric I like what I see. I do not know Stephen Shore but everybody I know that does know him speaks very highly of him. I did attend a lecture by him and was impressed. <br /><br />Except for the fanatics on both sides pretty much both ND and pro cure people that I read support Autistics right to choose to take a cure which is your position and support for Autistics here and now. The disagreement is about which should take a priority of funding. My concern is that in the real world there will not be this choice, that there will be unresistable pressure to take a cure via financial inducements and penalties. Having two Autistic board members at Autism Speaks and the its only a difference/there are positive sides of autism rhetoric might prevent this.AutisticSince1957https://www.blogger.com/profile/07700590802057803680noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-88704002195916393272015-12-07T23:10:47.875-08:002015-12-07T23:10:47.875-08:00I hope this doesn't mean that they are going t...I hope this doesn't mean that they are going to abandon searching for a cure altogether. The best scenario would be to have Roger Kulp and yourself on the board.Yuvalnoreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-50443871675894689842015-12-07T16:04:09.345-08:002015-12-07T16:04:09.345-08:00Hello, Michelle, I think it is irrelevant whether ...Hello, Michelle, I think it is irrelevant whether or not a cure is found in our lifetimes. What is relevant is that it should be the ultimate goal of every funding body in autism. We should say, "someday we hope that we will never have a need for these organizations." <br /><br />While we may have no choice but to make the best of a bad situation, believing that society will ever completely accept autism and the neurodiverse baloney that societal acceptance and accommodations will solve these problems is nothing more than an opium-induced dream. <br /><br />The problem with every autistic being heard is that just a small sample of them are being heard and it is those at the last impaired part of the spectrum. I feel that should change, which I why I would endorse Roger Kulp in Steve and Valerie's stead or at least in addition to them. jonathanhttps://www.blogger.com/profile/14972394536850151087noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-56598688527923357782015-12-07T15:11:29.873-08:002015-12-07T15:11:29.873-08:00I guess the same question could be posed in the op...I guess the same question could be posed in the opposite direction. "Why is it that people with no disabilities feel entitled to express their opinion for this organization?" When the disabled people directly affected by the actions of the organization are not represented, misrepresented, or ignored.<br /><br />I understand that there are autistic people who want a cure. But what if that never happens? Or doesn't happen in their lifetime? There is no harm in accepting yourself as you are. There is no harm in society accepting you as you are in the mean time. Many of the traits that make being autistic difficult, that you'd want to cure, would be alleviated with more acceptance by all and a complete lack of the scare tactics and demonization that has been the method of Autism Speaks so far.<br /><br />Everyone needs to be heard. On this matter, everyone autistic needs to be heard first and foremost. Anonymoushttps://www.blogger.com/profile/17414508734191302660noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-29192366171374222042015-12-07T13:02:54.488-08:002015-12-07T13:02:54.488-08:00Claudia: Many of the people who oppose autism spe...Claudia: Many of the people who oppose autism speaks do claim to be disabled. In some instances, their understanding of what a disability means is different than yours or mine would be. They believe in the social model of disability rather than the medical model of disability, claiming that it is societal constraints that cause them to be disabled. <br /><br />I agree that autism speaks should not serve neurodiversity interests in any way or have neurodiversity proponents on advisory boards like John Robison or fund researchers whose bent is neurodiversity such as Laurent Mottron. Unfortunately, they feel differently and there is nothing I can do. I suppose you'd have to direct your question about that to autism speaks. jonathanhttps://www.blogger.com/profile/14972394536850151087noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-58906885815295355472015-12-07T12:37:33.188-08:002015-12-07T12:37:33.188-08:00I do not understand this whole situation with Auti...I do not understand this whole situation with Autism Speaks. Why is it that people with no disabilities feel entitled to express their opinion against this organization? Should not the two be separated and practical and concretely defined as serving different interests? Claudia Mazzuccohttps://www.blogger.com/profile/09475625910961150508noreply@blogger.com