The Autism Speaks bait and switch with I am Autism

23 Sep

Autism Speaks’ recently debuted their new “I am Autism” video.

Here is Suzanne Wright’s appeal for parents to donate video footage for this event:

“We will all help shine a bright spotlight on autism.”

I find the final video to be far from “shining a bright light on autism”.

I am so glad I didn’t trust Autism Speaks with video of my child.

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19 Responses to “The Autism Speaks bait and switch with I am Autism”

  1. Corina Becker September 23, 2009 at 03:34 #

    Why am I reminded of that hostage letter writing campaign? gah.

  2. Paula Durbin-Westby September 23, 2009 at 04:07 #

    This is one of the most creepy and egregious videos I have ever seen. Autism Speaks at its “finest.”

  3. Emily September 23, 2009 at 04:25 #

    WTF? That narrative doesn’t even make any freaking sense? “I work faster than pediatric AIDS…?” “I will make sure your marriage fails?”

    What are they trying to do? Scare the crap out of people? Who personifies a developmental disorder this way? Sadists? This is horrific.

  4. ebohlman September 23, 2009 at 05:17 #

    This comparison to pediatric AIDS is really, truly dishonest. Pediatric AIDS is an extremely rare disease in the developed world (which is presumably the only world they’re applying their autism statistics to); there are plenty of conditions that a) are considered rare diseases and b) are far, far more common than pediatric AIDS. You might as well say “there are far more autistics than blacksmiths.”

  5. David N. Brown September 23, 2009 at 07:28 #

    This video sounds like an urban legend. Reminds me particularly of “Bad Times” computer virus parody.
    http://www.makingpages.org/pagemaker/humor/badtimes.html

  6. Lydia September 23, 2009 at 16:27 #

    Wow. I couldn’t even listen all the way through. We really need to “shine a bright light” on the vermin at Autism Speaks who would use such hideous language about us and our brethren. I’m up for protesting their next walk in our area…

  7. Terrie September 23, 2009 at 17:31 #

    Due to current lack of speakers, I watched this without the sound. A very different image than Autism Speaks was going for, from what people are saying about the narration. Some of those kids on their own look happy, especially the kid in the water.

  8. codeman38 September 24, 2009 at 01:40 #

    @Terrie: I mentioned that in my own post as well– the video takes on a completely different tone when the narration isn’t there.

  9. Shanna September 24, 2009 at 15:31 #

    That was unbelievable. I don’t even know what to say. I feel a little nauseated after watching it. I am amazed that people feel this way about their own children. My son Logan is such a joy. He does not cause me one ounce of embarrassment. This video is what’s embarrassing. They make autism sound like the plague. How can you expect acceptance for your differences when the people who are suppose to be part of your own community are horrified by you. What a huge mistake on Autism Speaks part.

  10. nitramnaed September 24, 2009 at 17:07 #

    Wow! I don’t know what to say about this. This is a Autism advocacy organization????

  11. Kent September 24, 2009 at 19:50 #

    I think people are missing the over arching point of this video. This is about parents caring and loving their child, no matter what has afflicted him. No matter how hard it is, not matter how difficult, love stands all. They simply gave a personality to the disease.

    As a parent of two children with autism who had trouble dealing at first, I can say this video doesn’t offend me one bit. Yes, at one time I was embarrassed. I was 23 when I had my first autistic child. It caused problems with my marriage, and I had horrible insurance. This video brought me to tears because it IS my transformation story. I moved from misery, to copying, to acceptance, to active involvement.

    If you have never experienced what the first part talks of, or don’t remember it, then you might not like it. But to say it is offensive or horrible is to ignore the stark reality of how this whole journey begins for so many parents, and how I hope most of it ends for parents and kids, with love.

    I hate parents acting like perhaps they never felt this way ever! Never felt hopeless, never felt dispair, never felt “why me?”? I can’t stand hearing people demonize parents like this! How dare you assume that your case is some how the norm, or if it is, that someone else hasn’t gone through that same thing in that same fashion! I did feel that way, in the beginning. This video is for those parents, for those people like me, for those making the transition.

    What you are doing, what you are saying, is not going to help those parents make the transition. It is only going to drive them away from getting help because people like yourselves consider them “bad parents” or you “can’t believe there are parents like that”. Those people are people who can’t deal, or are trying desperately to deal. You should be holding a hand out in helping instead of saying such crass things about “those types of parents” You have no idea the damage you might be doing to a parent, and in turn, a child.

    I’m not that parent any more. But I had to go it alone. Because the other autistic parents I talked too looked down on my for being embarrassed at his out bursts, or upset that he was 8 years old still wearing a pull up. I’m not now. I love him and his brother with all I have. Do not mistake a parent going through the first part of that video as a parent who doesn’t care. You have autistic kids too, you should know better!

    • Sullivan September 24, 2009 at 22:11 #

      Kent:

      “I hate parents acting like perhaps they never felt this way ever! Never felt hopeless, never felt dispair, never felt “why me?”? I can’t stand hearing people demonize parents like this!”

      Who pretends like this isn’t difficult? Disability is difficult. Guess what, it’s more difficult for the disabled than the parent. The Autism Speaks video completely ignores the perspective of the disabled. The autism speaks video describes autsitics as children whose disability is burdensome on the parents.

      And, even if people had these feelings in the past, if they decided they were detrimental to both themselves and their children, shouldn’t they speak out? If Autism Speaks is caught in the anger and denial phases, is that right? Is that leadership?

      “You have autistic kids too, you should know better!”

      Sums up my attitude towards Autism Speaks rather nicely.

    • Sullivan September 24, 2009 at 22:11 #

      “Do not mistake a parent going through the first part of that video as a parent who doesn’t care.”

      Don’t mistake my anger at Autism Speaks for thinking that some parents don’t care.

      Autism Speaks should be leading. This isn’t leadership.

  12. Jeni Hill Ertmer September 27, 2009 at 18:41 #

    My daughter, son-in-law, his 17year-old daughter and their two small children (ages 6 and 3) live with me. (Or, do I live with them? Well, it’s my house so…) But anyway, the two little ones both have autism so I have experienced this disorder as closely as have their parents. The difference being initially my daughter didn’t want to even think about Autism being the issue with the kids whereas my older daughter and I -who both noticed some of the signs/symptoms and suspected this might ultimately be the diagnosis first and we accepted the news quite readily whereas it took the children’s mother about a year to accept it in the older child so by the time the little guy began showing signs, she was knowledgeable, accepting and works her butt off to get them all the therapeutic help she can find for them.
    I often post about both the children on my blog -stories about them, photos and yes, even videos at times. My readers are frequently exposed to some of the downside to autism but more often than not, they are also learning that these kids are not bad kids, not contagious either, and very often they are just like lots of other children all over the world who are classed as being NT. My thoughts are that if I can show others bits and pieces as to how this disorder affects not just the individual but also the community around by those people often making them look different which can result then in their feeling much different too, that I am doing my own little educational program then.
    Having an autistic child is NOT the end of the world as we know it! It is just as glorious as having an NT child can be and sometimes, even better because when you see these kids learning, adjusting, coping with life and knowing what it took to get them to be able to do that, is just a wondrous thing at times.
    There are times when it saddens me and I worry about these two -how far will they be able to go in life, that kind of thing. But then I think of how far they have come and that tends to put those fears on a backburner. My biggest fear now is how long will I be around to see them continue to grow and to become the best they can be. Is that selfish of me? Of course, it is but isn’t that ultimately what we all want of our kids, grandkids, etc. -to see them do their best? To watch them achieve more and more, to reach more goals?
    The Autism video is scary, yes and I do feel it could do much more harm than good because I didn’t see anything of the postives that can come from people getting to know more about the disorder and the lives of those it affects. All the bad, and sad things mentioned or that were tried to be illustrated by that video had nothing mentioned to show the good things that therapy often can achieve, that hard work on the part of the individual and parents or caretakers brings about change in the behavior and learning capacity as well. Sure it make take a long time for some things to register, to bring about those changes but boy, the joy it also brings with it too!
    My grandkids are beautiful -inside and out -sometimes maybe I don’t appreciate them all that much in the middle of a meltdown or tantrum but I didn’t appreciate those when their mother or aunt or uncle (NTs ya know) had those things too when they were growing up. I didn’t accept that as being good behavior in them and I don’t accept that as good behavior in my grandkids either but I do work on changing those patterns in them but in a different manner than I would have used with my own kids. Only because my own kids understood things differently than do the grandchildren.
    Autism has changed our lives here -most definitely that is true. But for the most part, those changes have brought about more family commitment, more unity and the ability to display caring, concern, love and support overall -not just for the two little ones, but for each other as well.
    And when I say about changing the children -that isn’t to imply I don’t (or that their parents don’t) accept them but rather to see them strive simply to learn what is necessary for their own survival ultimately as they grow. It is the same as people would do if the child(ren) in their care are NT -or disabled by a crippling disease -or autism. It is more in what each of us makes of what others who have a disease, injury, disorder CAN DO than in what they can not do that is important to learn and accept.

  13. Socrates September 28, 2009 at 15:36 #

    “But for the most part, those changes have brought about more family commitment, more unity and the ability to display caring, concern, love and support overall -not just for the two little ones, but for each other as well.”

    I have to say this is also my personal experience.

  14. Angela September 29, 2009 at 05:02 #

    Wow, wonderful post. Makes me glad though, that I do not venture into ‘autism speaks’.

    I am dismayed and discouraged that an organization that claims to advocate on behalf of those who are autistic has implied that autism is a thinking entity that stalks our children and needs to be stood up to and battled.

    My child is not posessed by some demonic entity for the love of Pete… Nor does his autistic traits need to be battled and triumphed over.

    Where is the encouragement to learn more about autism? Where was the information sharing? What part of this video spoke for my child?

    And for the record, I never felt as if my child was posessed, taken over etc. I of course was worried (and still worry) about my autistic child-just as I do my NT children. The only difference is the direction I had to take with my concerns. (doctors, behaviour therapists, speech therapists, IEP’s and learning the jargon).

    While I realize that many parents had a rougher go than I had, each parent that struggled with the school system, medical plans etc, paves the way for the next parent.

    Was I the only one that caught the line where they said they use voodoo to fight autism? wow. A+ for dramatic influence F for advocacy.

  15. Jackie September 30, 2009 at 12:29 #

    I didn’t realize that parents submitted videos of their children, only to have their videos be made into a campaign saying their children are living nightmares.

    BRB, I have to go puke now.

Trackbacks/Pingbacks

  1. blog-thing : Autism Speaks - the sound and the fury - September 24, 2009

    […] you watch the video with the sound turned off it does shine a bright light. (Thanks to Terrie on LBRB for this idea.)The first half of the video shows footage of children and young people on their own. […]

  2. What’s So Funny About Wikileaks and Autism? | Neurodiversity - January 28, 2011

    […] impatiently, but have yet enjoyed only a temporizing, unconvincing, grudging walkback of the demonization of autism from many within and without the autism community.  All while the panic, […]

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