tag:blogger.com,1999:blog-5751271189667675662.post724169287014073251..comments2024-03-28T09:19:51.567-04:00Comments on Look Me In The Eye: Some thoughts on the Autism Speaks videoJohn Robisonhttp://www.blogger.com/profile/07407165016025447113noreply@blogger.comBlogger44125tag:blogger.com,1999:blog-5751271189667675662.post-50564678925708758712009-10-26T23:16:29.494-04:002009-10-26T23:16:29.494-04:00I realize that perhaps my wording in my first post...I realize that perhaps my wording in my first post was a bit harsh, I suppose I was having a bad day (week, month maybe)... I do work with non-autistics,and am married to a wonderful woman who somehow bears with me through it all. I am still upset by the seeming stigma conveyed in the video, and still sensitive about my daughter, but I apologize if I was being incendiary in my "NT bashing" it apparently was not a good day for me....LeeLeehttps://www.blogger.com/profile/06654622152127941219noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-87463867586281150942009-10-20T23:13:42.324-04:002009-10-20T23:13:42.324-04:00just realized i spelled benefit wrong. i'm a d...just realized i spelled benefit wrong. i'm a dork.vintagesuehttps://www.blogger.com/profile/03070738383803343195noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-9317647889201796182009-10-20T23:11:34.105-04:002009-10-20T23:11:34.105-04:00i'm almost afraid to watch this video. i don&#...i'm almost afraid to watch this video. i don't think i have the strength to waste my time with hyperbole and blah, blah, blah. i hope i don't offend anyone by writing that, but i can only take so much sensationalism. <br />i deal with specifics and what resources i can get in my community instead of reaching out to a huge group that doesn't directly benifit me or my child.<br />i love this post. i am so grateful for your logic that 'speaks' about taking each part of autism and finding ways to help or fix those that will benefit people on the spectrum...and a spectrum it is.<br />i don't need a large group with a broad picture...i need resources and assistance with one aspect of my son's spectrum disorder at a time. if i knew why he had to blink his eyes and make swishing noises for an hour straight instead of having a two-way conversation about what was happening around him, i would be way happier than having somebody define autism as evil. and once we help him communicate better, than we can tackle the bed wetting, the paper eating and defiance about simple things just don't make sense in his world. if somebody would advocate that for me, i'd gladly smile and pass it on.<br />thanks so much for always challenging these topics and this very broad subject of autism. you are a resource i can count on.vintagesuehttps://www.blogger.com/profile/03070738383803343195noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-56792620623841726322009-10-12T11:33:15.557-04:002009-10-12T11:33:15.557-04:00Good Morning John,
I was at the Barnes & Nob...Good Morning John, <br /><br />I was at the Barnes & Noble on Saturday in Burlington and you were just great. I had my aspergian son with me and he did his best to listen but he did wander away but came back as always. Oh well. I read the book some time ago but to hear you speak really was fantastic. <br />I have no interest in what AS has to say about anything. I do my best for my son everyday and I really do not care what anyone else thinks. There are bigger fish to fry. <br />PS. I forgot to ask you to wiggle your ears....Take careDavidhttps://www.blogger.com/profile/00190930168016005968noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-41669832194368102172009-10-10T22:27:06.084-04:002009-10-10T22:27:06.084-04:00Hi John,
For some reason, I have not heard of you...Hi John,<br /><br />For some reason, I have not heard of your book! Granted, I've been a little away from the Autism community for a while... but still! Started reading today... very fun stories :) My son has Asperger's and I would have to say wasn't as clever as you -- he's 18 now. But his Dad -- yep, he's got stories.<br /><br />As far as the Autism Speaks video -- I liked it. Autism had a huge impact on our family -- pushed everyone to their limits and created a lot of conflict (approaches, beliefs on what to do, etc). Our marriage ended partly due to the stress and lack of awareness/acceptance but especially support. There are many other reasons too -- but having a special needs child adds a dimension to a family that can create lots of chaos... That said, the audience that would best benefit from this video are people who do not get this! Could be anyone. But those people not experiencing the day to day problems/decisions/etc have NO clue :) So, I liked it for that reason. <br /><br />Thanks!<br /><br />Still reading...<br /><br />SarahAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-30020823045299235612009-10-09T15:28:46.210-04:002009-10-09T15:28:46.210-04:00thank you...you said exactly what I would try to s...thank you...you said exactly what I would try to say but would be unable to convey to others....thank you!!!twinmommiehttps://www.blogger.com/profile/11079021668561676468noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-73349860889973342702009-10-08T10:58:40.406-04:002009-10-08T10:58:40.406-04:00The video angers me because it draws parallels bet...The video angers me because it draws parallels between autism and evils such as cancer. Autistic people are different because their minds are different, they are who they are. They are not an evil to be expunged from the landscape, a plague to be cured! As an aspie I find most NTs boring, even stupid, and this vid seems to be produced from a stereotypical NT view of autism. Yes, my daughter is AS, yes it sucks when she's having a bad day, melting down, screaming, breaking my stuff, getting calls from the annoying school psychologist....but she's my daughter, she's not a terrible person. She's a gift to us, and we love her.Leehttps://www.blogger.com/profile/06654622152127941219noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-34587147704809808922009-10-06T15:56:43.655-04:002009-10-06T15:56:43.655-04:00Well said, John. I agree with you, and don't t...Well said, John. I agree with you, and don't think they should be allowed to share their fear tactics. It's very counterproductive and extremely negative.Sharonhttps://www.blogger.com/profile/18120210887041356602noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-33724229819178848962009-10-06T14:25:31.640-04:002009-10-06T14:25:31.640-04:00i love what you say here:
"Then find out how...i love what you say here:<br /><br />"Then find out how to remediate the disability it causes. Having done that, the people who feel disabled by that particular thing will have a solution at hand, which is wonderful and empowering."Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-28060568530558092122009-10-05T22:10:22.897-04:002009-10-05T22:10:22.897-04:00John after waching this I think maybe you took to ...John after waching this I think maybe you took to heart the negative connotationd of this video. I think the message is twofold, the negative and the positive;<br /><br />There are many negative pitfalls involved for many parents and individuals on the spectrum, not everyone is equiped to handle this and families, marriages and finances DO suffer. The second half of the video speaks of fighting back - the positive side.<br /><br />Personally, I have suffered the initial struggle, the family upset and stresses, the marriage difficulties - how can you be a whole parent to all your kids when one is overwhlming your resouces? how can you nourish your relationship and be whole partner when all your emotions and energy are being devoted in great part to one child, or when your energy and financial resources are being sapped by having to fight with school administrators and pay for lawyers, doctors and so on just so you can get the services your child is entitled to by law? <br /><br />I have had to sit in school with my child every day for nearly two years - what do you think that did to my business ? Last month I got down to $1.82 in my checking account.<br /><br />John I respect you, but to use your words; Come on, folks. The bad stuff is real - the difference is fighting back, supporting, networking and protecting our precious, special and wonderful loved ones, who happen to be on the spectrum, and - surviving.Trilogyhttps://www.blogger.com/profile/05533953655187121286noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-69174162556317598322009-10-04T10:12:28.264-04:002009-10-04T10:12:28.264-04:00It's tough to characterize "autism" ...It's tough to characterize "autism" anyway: everyone on the spectrum is different. My son is certainly delayed and challenged, but his issues have nothing to do with lack of affection. In fact, he's among the huggiest people I know!<br /><br />LisaLisa Jo Rudyhttps://www.blogger.com/profile/07517170138121456391noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-27081617682622304522009-10-04T10:10:04.420-04:002009-10-04T10:10:04.420-04:00The video confuses me. On the one hand it seems to...The video confuses me. On the one hand it seems to be saying "autism isn't a great thing and we're not going to give up". It shows a lot of love at the end.<br /><br />That's all very well - and it might make a nice message if it weren't for a few problems...<br /><br />1. They don't just say it's bad, they rub it in to the point where I get the feeling that it's saying - "if you find it in your family, run like hell". <br /><br />2. They blame all sorts of unrelated problems on it. It's true that it adds to the stress of marriage. It's not true that it breaks marriages up. In all honesty, the marriages which break up due to a bit of extra stress would often have hit the dirt as soon as any form of extra stress was present.<br /><br />3. They make it look like the fight is all from the outside in. There's nothing in the video that shows the autistic individual fighting the condition. <br /><br />4. It's unclear how they're going to fight it. What do they want? It looks like they plan to "hug the problem to death".<br /><br />5. The autistic person is shown as entirely passive. This is similar to 3 but not quite. It's not just about fighting, it's about initiating hugs, doing artwork and showing that autistic people can and do take their place in society.<br /><br />Too much negative and not enough positive - combined with a very unclear message.Gavin Bollardhttps://www.blogger.com/profile/13833941398375568706noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-77903309818158823452009-10-04T08:56:08.556-04:002009-10-04T08:56:08.556-04:00The only thing like this that I can recall seeing ...The only thing like this that I can recall seeing is Jerry Lewis and company vs MD.<br /><br />JL and MDA speak as if MD were a diabolical force with an agenda, and likewise, those with MD are seen as pathetic and helpless objects, and never quality human beings.<br /><br />I guess they've decided to rip off the Jerry Lewis formula.<br /><br />Autism and AS are not evil. They just are. The whole problem with this malevolent force logic is that the next step is that someone must have caused it. Hence the whole Vaccine thing. I suppose we can be happy they aren't blaming the Jews. At least not yet.<br /><br />Being born on the spectrum is of course, a disability and I wish I hadn't been. But all this fear stuff is not going to solve a thing. I wish they get away from the blame stuff, and the demonology, and more importantly, they would stop viewing spectrum people universally pathetic and helpless.<br /><br />AAFAAFhttps://www.blogger.com/profile/15948242063812202690noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-39420814775166908482009-10-04T07:10:42.486-04:002009-10-04T07:10:42.486-04:00As a rule I'm not a fan of AS, but I really do...As a rule I'm not a fan of AS, but I really don't know what they were thinking with this one.Michelle O'Neilhttps://www.blogger.com/profile/03221354521123541601noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-9673126408643791322009-10-03T00:07:34.465-04:002009-10-03T00:07:34.465-04:00the video is beautiful when muted.
the audio voic...the video is beautiful when muted.<br /><br />the audio voiceover is offensive.Navihttps://www.blogger.com/profile/04580741811662935801noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-33179156718551887982009-10-02T22:29:32.972-04:002009-10-02T22:29:32.972-04:00This is an excellent way to think about this probl...This is an excellent way to think about this problem. That video was just awful, thanks for this constructive solution.Jordanhttps://www.blogger.com/profile/15239709970883575853noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-65650156458315334732009-10-02T22:24:53.669-04:002009-10-02T22:24:53.669-04:00Really well said. Thank you for writing this. I ag...Really well said. Thank you for writing this. I agree.Stimeyhttps://www.blogger.com/profile/09685801693683588805noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-7996618499041437552009-10-02T19:26:36.124-04:002009-10-02T19:26:36.124-04:00Jonathan - I wish that they were actually presenti...Jonathan - I wish that they were actually presenting "harsh realities": crazy and even abusive educational situations, red tape everywhere, no access to SSI benefits, etc. <br /><br />Instead, they're making up a reality that is closer to a videogame than real life: an evil being who is stealing children and Must Be Stopped.<br /><br />If only it were so simple!<br /><br />LisaLisa Jo Rudyhttps://www.blogger.com/profile/07517170138121456391noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-13533986857293900412009-10-02T19:23:34.379-04:002009-10-02T19:23:34.379-04:00Granted the video was a bit over-the-top. I would...Granted the video was a bit over-the-top. I would have done it a bit differently if it had been a video I created. But sometimes harsh realities of people on the spectrum need to be portrayed in order to generate fund raising so that hopefully at some point treatments and a cure can be found.jonathanhttps://www.blogger.com/profile/14972394536850151087noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-47714093301109906942009-10-02T10:40:33.722-04:002009-10-02T10:40:33.722-04:00Have you seen this promotion from the UK
http://w...Have you seen this promotion from the UK<br /><br />http://www.talkaboutautism.org.uk/<br /><br />The picture says it all. <br /><br />Thanks for your super post John.Paulene Angelahttps://www.blogger.com/profile/06745651773162021333noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-28840218859696302582009-10-02T08:16:21.187-04:002009-10-02T08:16:21.187-04:00I think the main problem is Autism Speak's sta...I think the main problem is Autism Speak's stance on the spectrum in general - it's a disease that must be cured and is robbing us of our children. Nothing will change their views, just like how the the other other groups, the ones that preach of tolerance and changing society to make us feel better, aren't going to change theirs. <br /><br />I've found a lot of *positive* feedback about "I Am Autism"; there are people out there, mostly parents, who feel that the film's narration was accurate and truthful. Many of them do see autism and PDD as a disease, a curse, a burden that must be squashed in order to give them the "normal" children they believe they deserve. They are entitled to that opinion, and we are entitled to disagree with them. <br /><br />Yes, it's true that many of us are on the high-functioning side and can lead "normal" lives if we receive the proper tutorials, but the others on the low-functioning extreme - the ones whom this video was aimed at portaying - will need lifelong care and endless amounts of patience. This is the side that people generally think of when they imagine autism, and this is the side that AS panders to.Anonymoushttps://www.blogger.com/profile/11712902583277436056noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-87268164776904108522009-10-02T07:40:30.435-04:002009-10-02T07:40:30.435-04:00Autism Speaks job is to raise money. How else to p...Autism Speaks job is to raise money. How else to pay their Science Officer (who isn't sure there's an autism uptick) $600K last year? Look at Mark Rothmyrs (SP?) LinkedIn page - title? "Fund raiser." The smiling faces and happy kids who can't play baseball are for the advertisements. The harsher side is for fund raising. Now many HFA or Aspergian adults earn six figure salaries, like those doled out at AS? In their 5+ years of existence, how many families have they helped with child OR adult issues? John, I've told you for a few years now, AS does not have the interests of people w/ autism at its heart - not you and the HFA/Aspergian segment or my profoundly disabled children, for whom a cure is most desireable. The Wright's denounced their own daughter a few years ago - to protect the flow of money. And I can assure you - they pursue treatment for their grandson - whose GI problems have decimated him. Katie Wright writes for us at AoA and is most honest. For those of us w/ kids facing life in group homes or institutions, we darn sure want to bring them as far along as we can. For those higher on the spectrum, we want fairness, housing, and JOBS and college help and more. The smaller "fringe" groups that so many HFA people decry are actually working very hard to help all people w/ autism. NAA, TACA, Autism One - doing such hard work to help individual families - and it's NOT all about vaccines. AS asks us, the autism families, for money and then sends it to Two Park Avenue. They don't speak for me. Never have. KimKim Rossi Staglianohttps://www.blogger.com/profile/17687828526726281119noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-76290658208537050082009-10-02T07:09:33.041-04:002009-10-02T07:09:33.041-04:00One commenter suggested that the video is a good w...One commenter suggested that the video is a good way to let the world know we're banded together to take action against autism.<br /><br />Problem is, it (not surprisingly) has done just the opposite: shown us to the world as a scattered horde of bees all trying to sting one another.<br /><br />Even worse: to me it means that the biggest autism org in the world is paying NO attention to the community it's supposed to be serving. The message is identical to the "ransom notes" campaign -- and Autism Speaks certainly should have seen the reaction coming a mile away.<br /><br />I HATE that autism is presented like a demon king grabbing our children and replacing them with faerie changelings. It suggests that we are out looking for an exorcist or hero -- not research, education, or support!<br /><br />Lisa Jo Rudy (www.autism.about.com)Lisa Jo Rudyhttps://www.blogger.com/profile/07517170138121456391noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-39166902440191660472009-10-02T03:50:42.431-04:002009-10-02T03:50:42.431-04:00Haven't seen the video and have no desire to e...Haven't seen the video and have no desire to either, your write up was enough to put me off.<br /><br />Sounds like scaremongering, which seems to be the fashion these days. For example, in the news recently a girl died hours after having her Cervical cancer vaccination. That was the link and all we got for a day or so, then it transpires actually she had a tumour and was not in good health so it had nothing to do with the vaccine what so ever. How many girls and/or their parents will now not have the vaccine and suffer the worst consequences? HPV vaccines are controversial but I just wanted to illustrate the sensationalist world we live in. It seems we all have to do our own research into what really happened, what's really going on, you can't believe everything you see and hear.Amandahttps://www.blogger.com/profile/09594327337549020199noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-52412247023061978972009-10-01T20:00:53.678-04:002009-10-01T20:00:53.678-04:00It's a rarity finding a realistic balanced pos...It's a rarity finding a realistic balanced position, thanks John.<br /> If my child would ever be able to live a relatively independent life, I'd be writing on neurodiversity blogs about the need of accepting differences, but when difference means severe disability, it's not just accepting it as it is. Of course it doesn't mean demonizing the condition, it's ridiculous, but on the other side, let's suppose, hypothetically, that people who have benign tumors decide to get united in an oncodiversity community, demanding that people who haven't tumors, the oncotypicals, left them alone and stop trying to fix people who have cancer. Please I don't mean equaling autism to tumors, it's just a hypothetical parallel to illustrate my view. So while recognizing most in the spectrum don't need anything but respect, we can't forget that at the left end of the spectrum autism is disabling.Unknownhttps://www.blogger.com/profile/04520347142977451861noreply@blogger.com