The I Am Autism Video by Autism Speaks Controversy
Thursday September 24th, 2009 // Written by Andrea
On twitter yesterday I feel like a hellstorm hit. So many of the autism related tweeters I follow where going bananas about the new Autism Speaks video called I Am Autism. This video shows shots of kids with autism standing alone and you hear a voiceover that anthropomorphises autism as a malicious enemy describing the havoc it wrecks. Then you see the same kids with their friends and families and people saying how we’re fighting autism and loving our children.
People are up in arms about this video. They even made a facebook group called Autism Speaks Don’t Speak for Me, a new Tweeter joined called WeAreAutistic whose sole purpose is to bring down Autism Speaks. So of course I went and watched the three minute video, and it made me cry. I went through it line by line to try to figure out why people are so upset about it. I only really found two things that I thought could be a little offensive. The transcript of the video is at the end of the post.
One was the line saying if you’re happily married I will make sure your marriage fails. I get how you can be upset about that, insinuating that all parents with kids with autism divorce or that a child causes a marriage to fail. The truth is though that the divorce rate when you have a child with autism doubles. For us it’s made our marriage stronger. The other line that I thought people might have problems with was about how autism makes it impossible for you to easily attend outings without a struggle, embarrassment or pain. I’m never embarrassed by Tristan even when he screams bloody murder at the park when its time to go. And it only causes me pain in that I feel his pain and it hurts my heart that’s he’s struggling. So maybe they could have used better wording there, although in all honesty I don’t know one parent that has never felt an ounce of embarrassment when their child (with autism or not) tantrums, or does or says something inappropriate in public.
The last part of the video made me so proud to be a part of this community. As parents, family, friends, a community, we’re up against the odds, but we’re not going to back down, these are our kids and we’re fighting for them! The line that sent shivers down my spine was: When you came for my child, you forgot, you came for me.
I guess the other thing I can see that would be upsetting is that they are treating autism as a disease that needs to be treated and a threat that needs to be neutralized. And I know some people don’t view autism this way, they see the autistic traits as characteristics of the person that don’t need to be “fixed”. I don’t feel this way, I feel Tristan has a disease, he wasn’t born this way, and he’s recovering through treatment.
So tell me, are the issues I’ve hit on the problem? It just seems like semantics to me? What is the problem, I’m asking this sincerely with an open mind and not sarcastically at all, I want to know what the controversy is. And not just with the video, but also with Autism Speaks, I’m really in the dark about why some people hate this organization so much.
I Am Autism Transcript:
Man: I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I know where you live, and guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering ‘who will take care of my child after I die?’ And the truth is, I am still winning, and you are scared, and you should be. I am autism. You ignored me. That was a mistake.
– woman: And to autism, I say…
– man: I am a father…
– woman: A mother…
– woman: A grandparent…
– man: A brother…
– woman: A sister…
– man: We will spend every waking hour trying to weaken you.
– woman: We don’t need sleep, because we will not rest until you do.
– woman: Family can be much stronger than autism ever anticipated, and we will not be intimidated by you…
– woman: …nor will the love and strength of my community.
– man: I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
– woman: Autism? You forget who we are. You forget who you are dealing with. You forget the spirit of mothers…
– all: …and daughters, and fathers, and sons…
– (crosstalk: several people calling out “We are” and the names of different countries)
– all: We are the United Nations.
– man: We are coming together in all climates.
– woman: We call on all faiths.
– woman: We search with technology…
– woman: …and voodoo…
– woman: …prayer and…
– man: …herbs…
– man: …genetic studies…
– woman: …and a growing awareness you never anticipated.
– man: We have had challenges, but we are the best when overcoming them.
– woman: We speak the only language that matters:
– all: Love for our children.
– woman: Our capacity to love is greater than your capacity to overwhelm.
– woman: Autism is naive.
– woman: You are alone.
– man: We are a community of warriors.
– all: We have a voice.
– woman: You think that because some of our children cannot speak, we cannot hear them. That is autism’s weakness.
– woman: You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands.
– man: You have not properly been introduced to this community…
– all: …of parents and grandparents, of siblings and friends and schoolteachers, therapists, pediatricians, and scientists.
– woman: Autism, if you are not scared, you should be.
– man: When you came for my child, you forgot:
– all: You came for me.
– woman: Autism: Are you listening?
17 comments in the discussion so far...
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A good part of it, for me, is the fact that they’ve anthropomorphized autism while failing to see people on the spectrum as people too.
Also, there’s the fact that, just like the Ransom Notes ads before it (which I mentioned in my blog post on the ad), they failed to consider that anyone on the autism spectrum might actually hear or understand the ad. It’s… not exactly good for one’s self esteem to hear some of these things when one’s been diagnosed as autistic.
I couldn;t fine the FB page ot the Twitter account so I don’t think I can make a valid point, having also not seen the advert
( I could look on youtube but I have dial up and get bored after a million billion years of waiting for 1 second of play XD )
I think an issue like autism is always so sensitive that you can;t do anything lke this without provoking some people.
From what I can gather its preople WITH autism that are offended and parents who are not.
I can understand both points, as a parent all you want to do is to fight the autism, to rescue the baby you once had and be able to be a “normal” family again.
From the sufferers point of view though it can maybe make them feel weak and not in control of their lives to have those things said on screen. An older child/teen/ young adult who works hard to deal with autisim day to day may suddenly feel that they may nopw be looked upon as a helpless victim, unable to make any contribution to their own destinies.
So although I can see the comfort in the words to an parent or career I can also see the patronizing a person within the spectrum may see.
As I said though, I can;t comment too much.
@ACarLessFamily: Actually there are some parents who also think that this ad poorly represents their own attitudes and their children as well. So yeah.
Which reminds me, that’s a third issue: The ad makes generalizations that just plain don’t apply to all situations. It presents a worst-case scenario, but that’s not the scenario for everyone.
Sorry codeman38… I was sloppy with my comment there..didn;t mean to imply ALL parents agreed with the ad…but only that it would be more likely that parents would want to fight their kids fights for them..if that makes sense.
I just watched the video, and I found it very powerful. I’m a little confused as to what the major problems would be too.
My only comment would be to codeman38’s third issue: While it may not represent the lower end of the spectrum, I believe that the organization Autism Speaks (which is “dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families”) is promoting this video to do just that. I think they have chosen to present a “worse-case” scenario in order to make their point and hopefully raise more money and promote more awareness.
Just my two cents.
codeman – thank you for your point of view, as a parent of a child with autism I of course was looking at the video that way and not from the perspective of someone who has autism. I definitely see how it is damaging to self esteem. And now thinking of when Tristan is older I would never want him to feel he was a victim or burden in any way. This is why I never say Tristan is autistic, I say he has autism, I feel saying he’s autistic is letting that define who he is when he is a kid first.
I also agree with the worst scenario presentation. The videos they showed are not what autism is for our family. And I can see how this could also intensifying the autistic stereotypes, which is a huge issue for me.
Kelly – ugh, too bad about the dial up! But you did make some very valid points that again I didn’t think about. I think with Tristan being so young and us being so new to the whole world of autism I don’t think of it in terms of when he’s older. Sometimes you just work on getting through the day. So this has brought to light a whole new way I need to be thinking of the future. Because like I said I never want Tristan to feel out of control of his life or like a victim.
I think its the comfort of not being alone in this whole world of autism that I connected with in the video. Sometimes you feel so helpless and isolated as a parent and I thought the second part of the video did a lot to dispel that feeling.
Shar – you know I love your 2 cents! That was one of the points I didn’t make in my post that I wanted to, but it was getting too long;) That at the end of the day Autism Speaks is about raising money for autism and promoting awareness. And I agree I think it was a dramatic piece for that purpose.
And as Kelly mentioned I think no matter how the video was done someone was going to feel upset, autism unfortunately has always been shrouded in controversy.
I found it… inaccurate? Superficial? It seemed to focus very strongly on stereotypes of autism- casting autistic people as prisoners to autism, walled off from society. This is most definitely not what I have experienced with C or the other autistic people I have known and worked with. In fact, I have found that this stereotype causes parents of newly diagnosed children to feel powerless and afraid.
I understand that autism is on a spectrum, and at the profoundly disabled end of the spectrum quality of life can be very poor for the autistic person, and families can endure great hardships in order to find their children an education and assistance. But I also understand that for the vast majority of people on the autism spectrum that if society accommodates them, provides services and education, and most importantly offers compassion and empathy, they can have fantastic lives. The shame parents feel when a child melts down in Temple isn’t about autism to me, it’s about how people react to the autism.
I wish Autism Speaks would focus more on acceptance and understanding, less on fear based fundraising. Especially for the sake of C, a 4 year old who doesn’t know his diagnosis yet, and who deserves to have society embrace his differences and assist him when he struggles.
The truth is though that the divorce rate when you have a child with autism doubles.
Do you have an original source of this claim? I don’t believe it exists.
@Nicole As I said earlier, I also feel it focuses strongly on the “all people with autism like to be alone” stereotype. And that’s mainly the video portion that does that. However I think the narrative speaks a lot of truths about autism. As a parent of a child with autism I get what they’re saying, but as someone who has no experience with autism I can see how the video would just exacerbate stereotypes. In a way I do feel like Tristan was a prisoner of autism, he couldn’t look at us, he had gastrointestinal problems, he would hardly interact with us and he couldn’t communicate with us. This is now changing with various therapies and I feel like I’m getting my child back.
I agree that the reason quality of life for both people and families affected by autism can be poor is lack of education and assistance and empathy. And you’re right the focus should be on educating the public on autism and acceptance and understanding. A video that struck this tone would probably have been better accepted by the autism community.
@Joseph I was quoting from the National Autism Association website who said that many organizations give a statistic of 80% divorce rate in families affected by autism, and they where hoping to update that. This number is commonly quoted in many books on autism.
But you’re right that this statistic is difficult to find although it is quoted everywhere. Conversely, what I did find was the Easter Seals’ Living With Autism Study conducted in 2008. It was a US survey of over 2500 parents of children with autism. What they found about the divorce rate was actually lower in families with ASD. I was somewhat surprised to read this and I can only assume given such discrepancies in numbers that a more in depth statistical analysis and survey be taken.
I just wanted to thank everyone for their comments so far. I really appreciated them and they’ve opened my eyes for sure. I watched the video again but this time I looked at it as someone who has no knowledge of what autism is and found the first part very damaging.
My biggest fear for Tristan was for him to be stuck in a label and the first part of the video definitely puts a label and stigma to autism. I don’t want anyone to look at my son through those eyes. I want them to see the wonderful kid he is first and foremost and to understand the differences in him and why he does things that might not make sense to us at first (like lining up his trucks everywhere).
Nicole above is very right when she said that the shame a parent may feel isn’t for the child’s behaviour but for others reactions and lack of empathy towards their child. There really should be a PSA explaining the meaning behind some of the behaviours, like sensory issues and problems transitioning. But as I discussed with my husband people are more likely to donate money if they see the severe side of things and the need. But it didn’t need to be done in this way at the expense of our kids.
Thank you for your words about the end of this video. Nowhere in the press do I see the last portion mentioned and it was much more moving than the first section.
What frustrates me most about the disability letter is the fact that they say in essence say “Don’t spend money on research.” Would you tell the American Cancer Society to spend all their money on current treatments and no money on research. Behavioral interventions and education will only go so far. Until the underlying mechanisms or disease are discovered, we cannot discover therapeutic options that can make a positive impact on quality of life.
@meredith I completely agree the causes of autism, how brains of people with autism are different from people who don’t have autism, and other conditions that are comorbid with autism need to be understood. Its hard to be helpful when you don’t understand whats going on. There is so much research that needs to be done.
I didn’t like the video because it protrays autism as some sort of monster, like a dragon that has to be slayed. I think dragons, like autism, are something to be understood, something to learn about and learn from, not just to wipe out and crush.
I don’t like the way tons of their money goes towards so-called cures and preventions, but not enough towards things that would really help autistic people in the larger world.
For example, why not put some energy into getting rid of the JRC? Stuff like that and these kind of attitudes the video presents are the real monsters to be slan. As someone who had cancer, I resent autism, which I could have, being compared to cancer.
To me, these folks are like people who push bloodletting and galvinism on a person when what they really need is a good anti-biotic. They get in the way of understanding autism not as a crisis or a tragedy, but as something that influences how a person thinks and feels about the world. It’s not something that has to be seen as something that traps a person.
That person is already there waiting to be understood.