tag:blogger.com,1999:blog-5751271189667675662.post350016584122964844..comments2024-03-12T03:43:35.156-04:00Comments on Look Me In The Eye: I have decided to take a more active advocacy role . . .John Robisonhttp://www.blogger.com/profile/07407165016025447113noreply@blogger.comBlogger46125tag:blogger.com,1999:blog-5751271189667675662.post-75098538574804888212010-03-17T16:01:31.394-04:002010-03-17T16:01:31.394-04:00Good luck. I suggest you get them to change your b...Good luck. I suggest you get them to change your bio. You are a "free ranged" high school drop out that worked in music and electronics. (They didn't even use the word "engineer".) You now own a service station. And you like long walks, music, and you're a "world-class champion eater." Oh, and you wrote a book. They couldn't have slanted you worse if they tried.Unknownhttps://www.blogger.com/profile/08020050147834810791noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-50977914618489730222010-03-17T14:57:05.117-04:002010-03-17T14:57:05.117-04:00John, I appreciate your skepicism, but this same s...John, I appreciate your skepicism, but this same situation (room full of PHDs and me) prevails at the National Institutes of Health. There, the odds are even more against me, in terms of numbers.<br /><br />Let me assure you that I moved the scores on every proposal for which I had strong feelings. I was absolutely not ignored, and I felt my contributions were appreciated and thoroughly embedded in the review team's final result.John Robisonhttps://www.blogger.com/profile/07407165016025447113noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-69835834681525338902010-03-17T14:48:51.919-04:002010-03-17T14:48:51.919-04:00It should be pointed out that ALL the members are ...It should be pointed out that ALL the members are scientists or doctors, with the exception of John, including the "parents". I have to wonder, if they can find two scientists/doctors who are parents of ASD's, could they not find a couple who are ASD? Reading the bios, to say that John's stick out like a sore thumb is an understatement. Not to say John isn't qualified, but is does reinforce the idea "after dropping out of high school", any suggestions of his will be soundly ignored.Unknownhttps://www.blogger.com/profile/08020050147834810791noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-71084172255109193042010-03-17T13:01:17.077-04:002010-03-17T13:01:17.077-04:00Hopefully, their research will lead to some good. ...Hopefully, their research will lead to some good. If they can discover a prenatal test for Autism, perhaps they can stop the next Einstien or Newton from being born, preventing the next generation horrific weapon to be deployed by the next generation system of bomb deployment. The millions they get through their misleading ads would be well spent. /sarcasm<br /><br />Despite my concerns for their motivations of comprising 1/30th of their board to be those on the spectrum (despite having 1/10th being "parents"), I'm glad it's you. There are worse choices.Unknownhttps://www.blogger.com/profile/08020050147834810791noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-64041996146346770442010-03-15T14:17:46.058-04:002010-03-15T14:17:46.058-04:00someone else has already said this basically, but ...someone else has already said this basically, but the people who dislike autism speaks are going to criticize them no matter what. if they have no voices on the spectrum involved, they get criticized. if they do involve a spectrum voice, it's tokenism. they can't win, so i think the criticizers are best left ignored. <br /><br />no matter what their motivation is, more voices are good, always. it helps, it's constructive. so i'm all for this move. (also, jess wilson is in favor of it, that's all i need to hear).mhttps://www.blogger.com/profile/13570838005937684429noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-26531472530566541672010-03-14T18:12:11.087-04:002010-03-14T18:12:11.087-04:00I forgot to add (oops) that I am a success story f...I forgot to add (oops) that I am a success story for ABA. <br /><br />I am an autistic individual with two autistic children (both of course have different challenges and one is more impacted than the other but they both have autism). <br /><br />They both have received ABA treatments and are also success stories. <br /><br />I'm not saying ABA or RDI is for *every* person on the spectrum. It just doesn't work for some. But to say it doesn't work AT ALL... well, color me confused.Heather Babeshttps://www.blogger.com/profile/02032800572592796632noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-7873452248154300782010-03-14T18:10:29.566-04:002010-03-14T18:10:29.566-04:00I interviewed Jonathon Mitchell for an article, an...I interviewed Jonathon Mitchell for an article, and I've read a bunch of your stuff too... I've read a bunch of EVERYBODY's stuff... nature of the beast.<br /><br />While I do not know at this time what the future holds as far as your post to Autism Speaks goes, I can certainly say I wish you luck in the endeavor and do not think you are a "traitor" for trying to make change.<br /><br />People who yell at AS for their crimes don't want a first step towards fixing those? I don't get it. <br /><br />Yes, Mr. Robison is indeed just one autistic individual in the bunch... but that's just a first step. Who knows who else will be appointed in the future? It's a wait and see for me. <br /><br />Good Luck!Heather Babeshttps://www.blogger.com/profile/02032800572592796632noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-3828485201100545562010-03-13T22:41:10.153-05:002010-03-13T22:41:10.153-05:00Now that "Autism Speaks" has one actual ...Now that "Autism Speaks" has one actual autistic person on its board -- and 29 non-autistic people -- isn't this a little like picking one black and 29 whites to form the board of an organization to help blacks? Or picking one woman and 29 men to form the board of an organization to assure the rights of women?KateGladstonehttps://www.blogger.com/profile/07062492442607584456noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-74235440600180976522010-03-13T22:01:07.786-05:002010-03-13T22:01:07.786-05:00I hope this means Autism Speaks will finally broad...I hope this means Autism Speaks will finally broaden its focus by having someone on board who can speak to the needs of the less-disabled folks with autism. Congratulations to you both :)SpectrumConnection.nethttps://www.blogger.com/profile/02570871339545455198noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-35295392164143946172010-03-13T18:15:29.793-05:002010-03-13T18:15:29.793-05:00As with any decision in life, this too has been me...As with any decision in life, this too has been met with criticism and adversity.<br /><br />Despite what our feelings are about Autism Speaks, I think that this is a wonderful opportunity for both you and the organization. I trust that you'll work to the best of your ability for those who you represent, and for the best that the organization has to offer us.<br /><br />Congratulations John!Anonymoushttps://www.blogger.com/profile/11712902583277436056noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-77559470507794933532010-03-13T09:37:38.541-05:002010-03-13T09:37:38.541-05:00Yikes! John, I fully support your joining in the ...Yikes! John, I fully support your joining in the conversation, and have even blogged about it myself. http://professormother.com/2010/03/11/heres-to-you-mr-robison/ <br /><br />I think that the more division there is within the autism community, the more we hurt ourselves from finding out anything about it.... Taking sides does no one any good, and simply leads to infighting- when what we need is help and answers. I also LOVE that you are supporting more cognitive interventions! <br /><br />ClaireUnknownhttps://www.blogger.com/profile/04429096155566996758noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-80888248989152569662010-03-13T08:20:38.107-05:002010-03-13T08:20:38.107-05:00Not sure how I feel about this, John. From my pers...Not sure how I feel about this, John. From my perspective, AS has worked deligently to bury what seems to be the largest part of this population, regressive autism. Their science people have pushed for genetics and educational intervention research to the exclusion of environmental causes (yes...vaccines). It's been my hope that the Wright family will eventually get back their hold on this rogue pharma astroturphing charitable deflection, and lead it into a more environmental-causation direction.<br /> <br />I take you at your word, and know your values won't let you fall into some snake pit of environmental causation deniers over there. But somehow, their track record scares me. Could your appointment have more to do with window dressing? I don't know, but am very suspicious of their true intent. <br /><br />In any case - good luck. I'll be following this with much interest.<br /><br />TTerramuggushttps://www.blogger.com/profile/06635505623939150751noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-6962385980169626232010-03-12T21:42:26.944-05:002010-03-12T21:42:26.944-05:00I found out a few weeks ago that my 20 year old so...I found out a few weeks ago that my 20 year old son has Asperger's. "Look Me in the Eye" was recommended to me by a friend of mine. I'm on page 5 and I can't find the right words to express how much this book means to me already. As many times as you heard that expression yourself, I've said it to my son. I'm refreshed already with reading your references to your own world and not understanding why it's considered normal to "stare at someone's eyeballs". I finally get it and I'm energized to read about someone elses experiences which will open up more of my son's world to me. I have regrets for my lack of understanding for the past 20 years but I'm committed to channeling that to being the positive support system he needs and further understanding the wondrous and mysterious world of asperger's. Frankly, I know nothing yet of Autism Speaks, what it stands for or what it provides but if you have as much influence in that forum as you have had for me with 5 pages of text, good things are ahead for sure. All the best.Unknownhttps://www.blogger.com/profile/00197699284977921268noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-51351040726792634362010-03-12T11:25:40.042-05:002010-03-12T11:25:40.042-05:00I hope your new position allows you to succeed in ...I hope your new position allows you to succeed in getting "Autism Speaks" to actually *help" us spectrum folks instead of just pretending to talk for us.<br /><br />Evidently you share these hopes -- but what if these hopes are not fulfilled? It could happen that "Autism Speaks" won't change their actions one bit, just because of having you on the Board. <br /><br />It could happen -- for instance -- that "Autism Speaks" continues refusing to use more than 4% of their ever-increasing income to help actual people on the spectrum ... it could even happen that "Autism Speaks" continues using a lot of that ever-increasing income to fund yet more Playboy Mansion galas and to produce further degrading videos along the lines of their existing fear-pieces "I am Autism" and "Autism Every Day."<br /><br />Suppose it turns out that "Autism Speaks" doesn't listen to you, doesn't change a thing just because they've granted you a Board position, etc., etc., etc. If that state of affairs became evident, would you still feel willing to remain a Board member -- or a member at all? If so, for how long would you do this (if the organization remained unresponsive) before deciding that your (and other spectrum folks') best interests lay elsewhere?<br /><br />I'll be meeting with Autism Speaks management soon and that balance is certainly one of the things I want to discuss.KateGladstonehttps://www.blogger.com/profile/07062492442607584456noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-57579861418027015452010-03-12T11:16:25.558-05:002010-03-12T11:16:25.558-05:00Dear Mr. Robison -- now that you have an influenti...Dear Mr. Robison -- now that you have an influential position with "Autism Speaks," could you please ask them why their web-site column "In Their Own Words" chose to use the photo of a toddler to illustrate the autobiographical piece (personal narrative) of an young adult Aspergian who is a psychology major doing an internship at "Autism Speaks"? You can see this at http://www.autismspeaks.org/community/ownwords/intheirownwords_alice.php -- the same open-mouthed, apathetic-looking toddler is used to illustrate all *In Their Own Words" columns on the "Autism Speaks" site, which strikes me as pretty disrespectful (given that the authors and subjects of these columns are usually not toddlers.)<br /><br />I asked "Autism Speaks" why they made this choice, but instead of answering me they hung up. Maybe you can do a better job at getting some answers out of them.KateGladstonehttps://www.blogger.com/profile/07062492442607584456noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-23163389453508833082010-03-11T17:45:21.074-05:002010-03-11T17:45:21.074-05:00An autistic person has finally been appointed to a...An autistic person has finally been appointed to a position at Autism Speaks and all ASAN can do is complain about it?<br /><br />After all of those protests and complaining all they can do is be angry because the person <i>they</i> wanted wasn't appointed? They should be happy <i>any</i> autistic was appointed!<br /><br />They didn't get what they wanted (again) so they have to whine about it.<br /><br />I feel this is rather hypocritical of them (yet again).<br /><br />How typical.<br /><br />I'm glad that JER was appointed because he, at least, is sane. JER and I probably disagree on many things but I have no doubt that he and I could have a civilized conversation without resorting to petty name calling and responding with "whatever." Much better him than someone from ASAN and this quote from JER confirms it for me:<br /><br />"As I have written elsewhere, $1000 spent on community programs helps one community. That same money spent to develop a new therapy can be much more powerful in its effect because it can reach everyone. I believe in that, but at the same time I am sensitive to a need for a balance somewhere between 4% and 40%"Stephaniehttps://www.blogger.com/profile/12540927559726674184noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-10532206289348080712010-03-11T16:13:35.747-05:002010-03-11T16:13:35.747-05:00Congratulations John, I'm so happy that a fell...Congratulations John, I'm so happy that a fellow Aspie will be speaking for us. I'm getting active myself, but in a different route. I went through most of my school years being severely bullied, it was only when I was diagnosed with Aspergers that I made the connection with the syndrome and my school life. I've gotten active with several anti-bullying sites online, but after the suicide in South Hadley, I now feel the need to speak out. I wonder how many of us went through the hell that I did, and I weep. I'm praying that my speaking out will help kids in the future, and I thank you for being one more voice for us. I have one saying that I take to heart "Changes will come from the power of many; but only when the many come together to form that which is invincible, the power of one". Thanks again. EricErichttps://www.blogger.com/profile/05691895382486312215noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-27506374095352480152010-03-11T10:48:04.179-05:002010-03-11T10:48:04.179-05:00Thank you for taking an active role. This is an hi...Thank you for taking an active role. This is an historic moment for those on the autism spectrum.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-8953773492399717592010-03-10T23:34:51.816-05:002010-03-10T23:34:51.816-05:00John -
We are a thankless group of people. I th...John - <br /><br />We are a thankless group of people. I think you're wonderful. <br /><br />I love Autism Speaks - and I am a biomed-head.Unknownhttps://www.blogger.com/profile/10267681400148975710noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-82848507579573743552010-03-10T23:21:11.882-05:002010-03-10T23:21:11.882-05:00As an Aspergian member of ASAN and a neurodiversit...As an Aspergian member of ASAN and a neurodiversity supporter, part of me is glad that Autism Speaks has finally appointed someone on the spectrum to its advisory committee (and I hope you can help shape their decision making to be far more beneficial to autistics, instead of a measly 4% of money going to the community); however, I feel they are very hypocritical! <br /><br />In one breath they say "People with Asperger's are on the spectrum, and we should support them and share their stories" (look at their website stories and guest blog entries), and in another breath they shout "You're not really autistic, so you don't know what you're talking about!" Make up your minds, Autism Speaks: People with Asperger's are either autistic or not autistic. You can't have it both ways.Ylanne S.https://www.blogger.com/profile/15260021956215537586noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-55188995379357868082010-03-10T21:54:56.985-05:002010-03-10T21:54:56.985-05:00(And Ari doesn't want you saying that you have...<i>(And Ari doesn't want you saying that you have any links/support from ASAN - because you don't)</i><br /><br />Actually, Socrates, Ari and ASAN are doing John Robison a favor with that stance.jonathanhttps://www.blogger.com/profile/14972394536850151087noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-51306269192021556652010-03-10T18:09:47.340-05:002010-03-10T18:09:47.340-05:00Sylvie Mac, I know it's easy to see me as one ...Sylvie Mac, I know it's easy to see me as one among thirty, so what can I do? But I don't feel that way, because I was one among thirty six with the NIH review boards, and I most assuredly moved those groups on issues where I felt strongly. <br /><br />If I felt I was a "token autistic" I would not have agreed to do this. Why don't you give things a chance and we'll see what develops.John Robisonhttps://www.blogger.com/profile/07407165016025447113noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-62146131858855356812010-03-10T17:38:03.047-05:002010-03-10T17:38:03.047-05:00I really wish I could see this as good news, but I...I really wish I could see this as good news, but I can't. Why? Because the position doesn't allow you any input into the structure or functioning of Autism Speaks. It's the kind that allows them to say "Look, we have a real autistic person working with us." I hope very much that I turn out to be wrong, but it seems to me that you're going to be nothing but the "token autistic."<br /><br />Thirty-some scientists, two parents and you. How much influence do you really think you're going to have even in that limited capacity.CS McClellan/Catanahttps://www.blogger.com/profile/12528100633458181090noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-72316034730344071822010-03-10T17:01:35.144-05:002010-03-10T17:01:35.144-05:00Clay, you have never heard me refer to anyone as w...Clay, you have never heard me refer to anyone as worthless. And I would never countenance elimination of any group of people.<br /><br />I do not think you are going to see 40% of Autism Speaks funds directed to community service simply because their mandate is to support research.<br /><br />My own goal is to steer that research in a direction that benefits autistic people.<br /><br />As I have written elsewhere, $1000 spent on community programs helps one community. That same money spent to develop a new therapy can be much more powerful in its effect because it can reach everyone. I believe in that, but at the same time I am sensitive to a need for a balance somewhere between 4% and 40%John Robisonhttps://www.blogger.com/profile/07407165016025447113noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-34960012298530787142010-03-10T16:53:25.200-05:002010-03-10T16:53:25.200-05:00It makes me happy to know that you will be able to...It makes me happy to know that you will be able to thoughtfully support and influence such a large group. I would love to see the "autism community" come together and become more effective.ThatsBaloneyhttps://www.blogger.com/profile/07518203980804301410noreply@blogger.com