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Groups Outraged Over Video Released By Autism Speaks

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A group of leading disability organizations is calling on Autism Speaks’ benefactors to end their support for the organization. The move comes in response to a video distributed by Autism Speaks which critics say depicts people with autism as less than human and burdens on society.

The video, which aired at Autism Speaks’ World Focus on Autism event earlier this week in New York, features two parts.

The first part shows young people with autism as a voice-over declares, “I am autism.” The man’s voice continues by describing autism as a disorder that works “faster than pediatric AIDS, cancer and diabetes combined,” will ensure that your marriage fails, will bankrupt you, cause you not to sleep and make it “virtually impossible” to go out in public without experiencing embarrassment or pain.

The second portion of the video features more hopeful images. The voice-overs declare that through love for their children, parents and others will work tirelessly to overcome the challenges autism presents.

In response, disability advocates are now coming together to condemn the video, which they say is part of a pattern of behavior by the nation’s largest autism advocacy organization.

In a letter being prepared for open circulation next week, the group of advocates say the video is a “fund-raising tool” that relies on “fear, stigma, misinformation and prejudice against autistic people.” The letter will be sent to Autism Speaks donors, sponsors and supporters and it will be posted publicly, organizers say.

Already the American Association of People with Disabilities, ADAPT and TASH are among the organizations that have signed on to the letter organized by the Autistic Self-Advocacy Network. Other organizations are now reviewing the document.

The letter cites a public service announcement and another film from 2005 called “Autism Everyday” as other examples of fear-based tactics used by Autism Speaks.

The group of advocates go on to ask the public to no longer support Autism Speaks and instead find new ways to support people with autism and other disabilities.

“Autism Speaks believes that its bottom line will be helped by portraying autistic people as less than human,” says Ari Ne’eman, president of the Autistic Self-Advocacy Network. “This is really damaging if you’re trying to get your child included in school or if you’re an autistic person trying to find a job or get included in society more broadly.”

When asked about the video, Autism Speaks representatives tried to distance the organization from the short film, which appears on the group’s Web site and includes home videos solicited through the organization.

Representatives said the film was created by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter and producer Billy Mann, both of whom have children with autism. The film is set to a poem written by Mann.

“It is an intensely personal expression by these two fathers and their hope is that the piece inspires other voices and artists in the autism community,” according to a statement from Autism Speaks. “No one perspective can ever be the definitive voice of autism. We encourage everyone in the autism community to acknowledge the myriad voices and have tolerance for the spectrum of opinions.”

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Comments (13 Responses)

  1. bensmyson says:

    Sigh… Well I tell you what, as a parent of a child diagnosed with autism, autism ought to scare the sh*t out of every parent on the planet. It’s not something you wish upon your child, hell, any child.

    Autism is the devil. I realize it is a part of who my child is, but my son was not born with autism, he was injected with it. I know who my son is, I held him, played with him, talked with him, looked him in the eyes and laughed with him for the first year of his life, 366 days to be exact, then he changed, drifted away, replaced with someone we didn’t recognize. It took a long time, hard work to find him, we get a piece or two back every now and then. No one loves anyone more than we love Ben and no one HATES anything more in this world than I hate autism. Saying Ben is autistic is like saying saying a child victim of a gunshot wound to the head is a bullet hole. Our children are victims of an environmental toxin that presents itself as having characteristics of autism. They are victims, they are not bullet holes.

    You know it’s great some of these high functioning adults with autism defend their place in the world, awesome, but when they make it a part of their mission statement that, “the goal of autism advocacy should not be a world without Autistic people” I have to assume they embrace autism as a disability, much like someone who is unable to walk and has to use a wheelchair embraces their limitations. No problem with that, however you, as an adult, want to cope with your disabilities, fine. What I do have a problem with is if this organization by and for people with autism means to say that autism is to be accepted as a natural element of human development or evolution and by no means should it be researched for a cause so it can be prevented then they are wrong. I will do all that I can possibly do to destroy autism in my son, and when I get done with that I will move on to others. I know who my son is, I will never forget, for all I know he is indeed suffering and wants to be saved…. before he forgets who he really is. He is NOT autistic, he is not a bullet hole, he is a victim of a poisoning, a boy with a brain injury that presents himself as someone with the characteristics of autism.

    Thanks Autism Speaks, I can relate.

  2. bodoyle1 says:

    I have watched the Video and I think it was well done. It is very dramatic but it touched me. I think it is as was stated 2 fathers stating their own feelings and emotions and I feel many of the things that were in the video.

    I am the single Father of a 23 year old son with severe Autism. I can see that some may have a issue with the first part of the video but there is so much truth in it. Families with Autism have a much higher divorce rate. Finances are tough and there is not enough research being done.

    I say we need all sorts of Voices an this is just one more some may not like it. But, I think all things considered it does nothing to harm the cause of Autism and as my son has very limited speech I feel it does at times speak for him.

    I think they should have included one thought though. The person who is working the hardest to battle Atuism is the one who is afflicted with the condition.

  3. geeegee says:

    I liked the video because it is true. For a while I have been gritting my teeth against the saccharine messages of early autism intervention, and supposed protocols which create “cures.”
    Early intervention is key. Us parents of adults with autism sometimes say, “a key to what?”
    When a child with autism turns 18….there are few services and resources at one of the most critical times in an autistic person’s body and mind and life. They go into free fall, isolated and clinically depressed.
    I have to beg the question why early intervention at all?
    If people go into free fall? Adult children with few supports and few life skills or sexual education training become horrible isloated and depressed. This can lead doqwn roads we never thought we would be on.
    25 per cent of our prisons are filled with people who have mental illness or developmental disabilities. Many, many are people with autism.
    I thought the video was too lukewarm myself, because I know the utter hell I have gone through to get education and services and life skills for my son. The autism community needs to be less myopic. Just down the road is a rude awakening. I support these men who get the grit on their stories. People with small children need to look far down the road, and advocates need to structure real infrastructures for the one out of 150 kids to be born with autism. The age of 18 is around the corner.

  4. Gabriels daddy says:

    The video moved me and touched on the very deep emotions I have. I would use this video to help express what it’s like for my family.

    If a specific disability community expresses their unique feelings, how is it the place of the larger community to curtail this? I am disappointed in the reaction from the general disability groups and surprised that they take it upon themselves to speak for our individual situation.

  5. Paul Wady says:

    As a high functioning Autistic adult who works with people with Autism at the lowest level of functionality, I can understand the first two comments.

    I Britain, many families are struggling and indeed damaged by having Autistic members of all ages. The Government does not do enough, and in many ways it is too late for some to be helped. I am proud to be part of a charity that is working hard for everyone on all points of the spectrum.

    However, the problem my kind has with the I AM AUTISM film is the obvious belief that my condition is cureable, and that it should not be accepted as part of human life, part of nature, and something that is the same as being Gay.

    Also, I notice one commentator is convinced their child was toxified by vaccines. There is still no proper proof of this. It is circumstantial.

    Due to the debilitating nature of Autism, it is rejected and hated. It is disfunctionality that draws hatred.

    If low functioners are made high functioning by ‘interventions’ then if they can function, relate and ‘do’ the Neurotypical things, everyone happy.

    THIS DOES NOT MEAN THEY ARE NOT AUTISTICS. THIS DOES NOT MEAN THEY ARE NOT OF MY KIND.

    Thank you.

  6. billysmum says:

    Please do not believe that the view of autism shared in that presentation is
    a common one. Please do not think that the view of the majority of families
    living with an autism spectrum disorder is that ASDs should be eradicated.
    Please do not believe that autism is something that needs the stigma that
    Autism Speaks seems to want to place on it.

    Autistic people see the world differently, and in doing that, challenge our
    own perceptions. That is surely a good thing. Through autism we learn that
    communication is complex, that people are intrinsically and individually
    different. In a good way. Autism shows us that everyone needs to be
    considered with care and respect – even if they don’t appear to understand.

    Yes, we need to understand why the diagnosis rate is climbing at an alarming
    rate. We need to understand so much about the condition. With that
    understanding, we can make sure that autistic people are understood – by
    every level of society.

    I am unsure what Autism Speaks were trying to communicate, but please know
    that their vision is not a shared one.

    If you can, follow this link, and hear an alternate view. A positive view.

    http://www.youtube.com/watch?v=0HwDXoHnVxY

    Keep up the good work!

    Kind regards,

    Valerie Foley and Billy Judd (almost 6)

  7. vmoskowitz says:

    The outrage over this video reminds me of the uproar over “Autism Every Day,” esp. the part when the woman said she considered driving off a bridge with her autistic daughter. She got a lot of flack for saying what a lot of people have felt. These videos are honest expressions of pain. All of us with autistic children can relate to some if not all of these stories. We should be able to love and accept and celebrate our children AND talk about the grief and frustration as well.

    That being said, I do wonder how the more negative videos such as this could help fuel a push for a prenatal genetic test for autism, and what would happen if such a test were available.

  8. elizabeth498 says:

    As the parent of a child with AS/HFA and as an Aspie myself, I will readily admit I do not have the life experience of lower-functioning autism. However, I did find the wording of the first part of the video highly depressing. The words were libelous of both my life and that of my son. For that reason, I will treat that video as “inappropriate material” and hope he never sees it. I wanted to strike back and rewrite it so that it meshed more with the reality of my family life.

    The rub lies in the fact that there are families out there who subscribe more readily to the content in question. I cannot deny them that.

  9. boydad4 says:

    I agree with bensmyson. My oldest son’s autism is the devil. I hate it. I will never be glad it is a part of him. It does not make him special…it makes him disabled. Now, I also have a fourth son who is more along the lines of Aspergers. He passes as “normal” but “quirky”. So, I have both scenerios. IF I only had the younger higher functioning son, it would not be as devestating. That is for sure. He will learn to drive, have a job, etc…he will be able to enjoy life and live it independently, in spite of his quirkiness. BUT, my oldest son is never going to live independently, never going to drive, and will need supervision his entire life. While I love him with every fiber of my body…and would die for him…I do NOT embrace his autism as anything positive or “special”. NO. It is brain damage. Do folks who have had strokes feel blessed to have had their stroke? Do folks who have suffered traumatic brain injury embrace the fact that they are left permanently disabled? No. They learn to deal with it…but they don’t love it. That is ridiculous. They do not celebrate these things. MY son’s autism has been devastating to him, his father and me, and his brothers. While we will always fight tooth and nail to ensure he has every single therapy and biomedical treatment available out there…and will continue to chase every single new theory and treatment…it will still always be the case that we hate it. If someone could snap their fingers and cure him, we would, of course, take it. It drives me crazy for families to say they wouldn’t change a thing about their severely disabled child if they had the chance. Are you kidding me????? That’s just nuts. The adults who are affected with autism in some degree or another who have been able to go on to live independently…great! I’m happy for them. However, they don’t know any different. Of course they are going to say that they are happy the way they are. It is a completely different story than what I am dealing with. This video is real. This IS how autism is affecting my family and most families. WAY TO GO, AUTISM SPEAKS!!! CONTINUE TO TELL THE TRUTH.

  10. GFCFSFPlusMom says:

    I cried when I saw this video. THANK YOU Autism Speaks for finally seeing the light. Autism is separate from the children. Autism is a disease that is stealing our children. The video is gripping and “in your face” but is not meant to demean our Autistic children in any way. They are the innocent victims.

    The people who will not like this video are the people who do not see Autism as biomedically treatable. People are different. I will never accept Autism. It is a disease I will fight forever so that my son will have a life for himself.

    If you are one who condemns this video, please try to understand another view . . .

    Bless us all

  11. brooksm says:

    I think there has been a great deal of overreaction. In my view the video is very powerful and well done. As the father of a son who falls within the definition of autism at its broadest, much of what is said speaks to me and represents information that needs to be communicated to the general public.

    For what it may be worth I do not believe that my son’s condition is medically treatable. I think his condition was caused by a genetic defect not an injection. Whether autism is medically treatable is not the point. The point is that people with autism, and their families, suffer as a result of the condition without the help and understanding of others.

    To call out to donors to Autism Speaks to cease donations is nothing less than outrageous. That kind of call in my mind smacks of internal politics that is has been a major problem within the disability community.

    I will continue to support Austism Speaks and I hope that they continue with this type of hard hitting and meaningful approach.

  12. justonemoremom says:

    The response to this video and the content of these comments make a strong argument for the case for separating Autism Spectrum Disorders into several discreet and better defined disorders.

    There continues to be a strong case as well for discontinuing the practice of “diagnosing” functional people with disorders. By definition, one must experience a significant level of discomfort or dysfunction to receive a diagnosis of a DSM diagnosis.

    Otherwise we simply have individuals with strong personality traits or behavioral patterns and while these may be quite functional, associated with unique strengths or skills and something to be celebrated, and/or sources of pride, they are quite unlike the experiences of those individuals who are in fact, disabled by their disorders.

    With no disrespect for those very high functioning folks on the outer edges of the spectrum, I submit that most likely your experiences are light years removed from those of my very deeply affected, severely apraxic, physically ill child. And further, I would suggest that to apply the same label of “autism” to both of you does a disservice to you both.

    Cherri,
    Ben’s mom

  13. RedPhoenix says:

    I know that there will be people who disagree with me on this but I’ll say my favorite saying about disabilities;

    My Aspergers helps me to learn more
    My Schizotypal Gives me inspiration
    and My OCD and ADHD just makes things fun

    I am a 27 year old man who had Aspergers all my life and there were times when I just wished it would go away and even times when I thought it would be easier to just end things myself. When I was put on psych meds the awful experience left me with a new appreciation for who and what I am and the fact that if I had one less experience in my life then I would not be close to who I am and who I’m meant to be.

    After all you’re only as disabled as you think you are. If you look at the world around you and learn from it then you are not disabled at all.

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