'I Am Autism' Advocacy Video Draws Controversy

The latest Autism-related controversy stems from a video, "I Am Autism," created for Autism Speaks, the nation's largest autism advocacy group, reports TIME. Directed by Academy Award-winning director Alfonso Cuarón and songwriter Billy Mann, each of whom have a young child with autism, the video has drawn the ire of autistic self-advocates who feel that it portrays the autistic as "burdens and objects of fear and pity."

The video depicts images of children with autism, paired with a menacing voiceover that intones: "I am Autism...I work faster than pediatric AIDS, cancer and diabetes combined...you have no cure for me...I will plot to rob you of your children and dreams. The truth is, I am still winning and you are scared."

Autism Speaks is dedicated to spreading awareness of autism, funding research and advocating for the needs of individuals with autism and their families. However, the video's tone, despite a hopeful ending, has rankled groups such as Ari Ne'eman's Autistic Self Advocacy Network, which has organized protest rallies nationwide, charging that:

Groups like Autism Speaks choose to use fear and stigma to raise money, but very little is going toward services, research into improved educational methodologies and things that have a practical impact on our lives.

WATCH:

Parodies have cropped up, lambasting the Autism Speaks video, with "I Am Autism Speaks" and "I Am Socks" among them.

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Comments

[Drew H]

I liked the video and found it moving and inspiring. However, as I read comments from others about the video, it occurs to me that if my autistic son were to watch it, he might not "get it." Many of the comments are from people who are on the spectrum and who are insulted by the video. That is unfortunate, and it is something that Autism Speaks needs to examine. I believe they are a very good organization, and I know that they will learn and grow as they try to help solve the autism riddle. The message in the video was very clear to me, and in no way does it put down those with ASD. In my opinion, those of you who responded on this site are doing the very thing the video talks about - you are fighting against autism.
Every person is special, ASD or not. But it is not the autism in you or in my son that is special. You would be just as special without autism. As my son has worked his way through the maze of autism, I have gotten to know the real person that he is. Autism gets in the way of that. It doesn't define him; it obscures him. That is the message in the video, even if the delivery didn't make it as it should have to everyone.

[Drew H]

I have a child with autism, so this subject is very personal to me. I thought the video was very moving.
I think people are misunderstanding the video, however. The video is not portraying people with autism as being all the things it is talking about. It is trying to personify autism itself. It portrays autism as this monster sort of being that tries to take our children and our lives. Then it shows us fighting back. This portrayal actually gives me hope. It suggests that I really can pull my son back from the monster. I really can fight it. We all can.
There are so many people who believe that autism is just the new "flavor of the day" diagnosis and that there isn't anything different now than there was years ago. I am from a very large family, and I have been around children all my life. There is zero doubt in my mind that autism is growing rapidly. Doctors and parents just were not that stupid or unaware 20 years ago. My son is my 3rd child. I knew before he was a year old that something was different. Something was very wrong. Unfortunately, autism wasn't in the news back then the way it is now, and my son was not diagnosed until age 7. Looking back, I would give anything to have had the information that is now available from groups like Autism Speaks.
Thank you, Autism Speaks!

[Pamela1975]

If a video that illuminates the terror, loneliness and hopelessness that a parent feels at diagnosis, actually makes people take notice, then so be it. My 5 year old daughter has Autism. We had little financial resources and our state doesnt pay for services. My daughters voice was taken, my dreams for her were shattered. The statistics should invoke fear in everyone. I have been frustrated and sleep deprived, feeling hopeless and lost. Yes, I have had moments where I felt it was a burden. I have never talked with a parent of a newborn that didnt feel overwhelmed, exhausted and uncertain. They all have felt the unexpected burden of this new chapter in their lives. To sit and pretend that Autism doesnt bring a burden with it is delusional. Is SHE a burden? No. Would I pick a neuro-typical child over her? NO WAY, I am blessed beyond measure. With some amazing therapists and her hard work and the support and love of family she is progressing. She is a smiling little girl that engages people and went from being completely non-verbal to having comprehensive and expressive launguage that is beyond her years. Regardless how small, every milestone she hits is met with great joy and encouragement. Nothing is taken for granted. I have learned more from her than I could ever teach her. THAT is the reality of Autism. It is terrifying. But our children are amazing.

[brady61995]

pamela your love your girl is beautiful and unconditional, hang in there and keep working with her and hopefully soon there will be more breakthroughs for your girl and so many others. children are amazing that is for sure.

[Drew H]

Pamela, your comments are "right on." I have a son with autism. He is now 15 years old. He has come so far! I look back and wish I had done some things differently, but I know that I did many things right. He has made progress that I couldn't even imagine possible as few as 3 years ago. How you work with your daughter is much more important than anything you can buy, so don't let the lack of money hold you back.
Best wishes to your family. Never give up!

[mizlydia]

When Autism Speaks uses their millions to provide assistive technology so that Autistic people can speak for themselves, then they might be worthy of praise. Spending 4% of their huge pile of booty on the people they claim to stand for is beyond pathetic. Six-figure salaries and legal fees plus the production of material that serves to further stigmatize and generate fear and/or pity are likely not what donors and walkers were expecting when they chose to support this organization.

Autism Speaks? Shut up and let Autistic people tell the world what they REALLY want and need.

[grooveygrover]

did you watch and listen to the whole video? It is amazing and wonderful, it brought tears to my eyes to listen to the families supporting their child, sibling, cousin, grandchild.

the negativity of the original post should be taken at face value, there is much more here than meets the eye

[Zipzop]

Imagine you're an older high functioning autistic kid who has just been diagnosed. Now imagine you've seen the video. I think it's enough to make some kids want to die if they see a video like that about themselves. They'd feel so much guilt about what they're doing to their families.

[staceyhigginbottom]

Disgusting! This is clearly another attempt by Autism Speaks to appropriate the voices of people with disabilities in order to advance their own financial interests. They are quite literally fighting a war with us that will determine who speaks for people with disabilities. Even if they weren't complete liars about where their money goes, they have no right to spread tired, hateful stereotypes about us.

PARENTS: Autism Speaks has been telling you all the things your children will never do for too long. You have come to believe it. You must be very careful that they never do.

[LBRBSullivan]

""I am Autism...I work faster than pediatric AIDS, cancer and diabetes combined...you have no cure for me...I will plot to rob you of your children and dreams. The truth is, I am still winning and you are scared"

Faster than AIDS, cancer and diabetes? What does that even mean? Autism isn't an infectious disease, it isn't a condition like cancer that you "get".

Autism will rob me of my children? Funny, that didn't happen. I still have dreams.

One of the major problems with the video is that it focuses attention on everyone except the autistics. Listen to who the community as:

"You have not properly been introduced to this community.: ...of parents and grandparents, of siblings and friends and schoolteachers, therapists, pediatricians, and scientists."

Where is the "community" are the autistics?

[brady61995]

1 in 33 now born with autism, they have to yell and scream and impact everyway they can. dont think this cant happen to your or your grandkids that are coming someday. 1 in 15000 to 1 in 33 in a few decades. research and understanding of the cause is more pressing then anyother childhood condition, is it the enviroment? vaccines? they dont know and it gets worse every year.

[RobinHMorris]

Firstly, this is not a new story, both literally and figuratively. When the Mann-Cuarón video was first released (over a month ago) there was significant uproar. What smacked of disingenuous stoking of fires, seemed to die down.

Parents of autism walk a tightrope of patience and understanding, threatened by sabotage along the way. The trials and tribulations are part and parcel to the journey. The truth is that no one can tell a parent how they feel and how hard or easy the fight may be. Perhaps it's all about semantics. Whether fighting a school system or trying to free your child from pain, every effort should be recognized.That being said, no one can tell someone with Aspergers syndrome how to view their own life either.

Katie Wright addressed the issue here:http://www.examiner.com/examiner/x-3565-Autism--Parenting-Examiner~y2009m10d2-Katie-Write-offers-words-of-truth-and-praise-about-autism-video

[RichardWalden]

My son, Adam Mandela, age 12, is autistic and I've lived through both parts portrayed in this excellent public service spot---the Horror of autism and its affect on my son and our family; and, the Hope as we realize that Adam is a very special person. The main message for me is that there is a "there, there" inside of Adam Mandela which is slowly, inexorably coming out. Adam Mandela's medium is making music; others have art, math, computer science, engineering and much, much more.

The challenge for Autism Speaks is to combine its advocacy with very carefully chosen grants for breakthough science. They are not nearly able to provide basic service delivery to autistic children; for that we need massive government involvement and a public health insurance system set up for the benefit of those in need of behavioral and medical services.

[saami]

Wonderful video! As the grandmother of a grandson with Autism, I think it is really wonderful. It is difficult for people to admit to the outside world how devastating this is and how much grieving the families do that their child will not marry, not have a regular job, will not be totally independent, will not have children, may never have a friend. And after the grieving is done than the family works hard to provide their child with the best care, education and chances possible all with love and support from them.