Why I don’t like “I am autism”

25 Sep

When the Autism Speaks “I am autism” video came out, I really didn’t like it. It was on such a primal level that I couldn’t put words to how much or why I found it offensive.

One problem with leaving my reasoning unsaid is that many people reach the wrong conclusions. I have read here and elsewhere complaints that people like myself who criticize “I am autism” don’t understand that it is about the most challenged (low functioning) autistics.

I would say that anyone who thinks “I am autism” is about the challenges of autistics (“high functioning” or “low functioning”) didn’t pay close attention to the video.

Here it is again. (and here is a transcript)

Of course, some people understood where I was coming from. Fellow parent, Monica, wrote in the comments:

My voice isn’t the one that matters when it comes to autism. It really does take an idiot not to get that. I think a lot of my role as a parent is shutting up and listening. Until I am able to be quiet long enough that I can understand what they are wanting/needing I have no business being anyone’s voice. That’s a lesson that Autism Speaks obviously hasn’t learned.

It has been said that most stories have three main elements: a villain, a victim and a hero. “I am autism” certainly uses this three-pronged plot device. Let’s take a look:

The Villain: Autism

Autism Speaks very clearly has cast “autism” as the villain. Autism has no morality. Autism doesn’t know right or wrong. Autism wants to steal our children and our dreams.

Autism is some sort of science fiction monster or demon who stalks our children.

The victims: Parents

Watch the video and ask: Who is affected by autism? If all we had was the video to go by, the answer would be simple: Parents. Autism takes money away from…parents. Autism ruins the marriages of…parents. When a child has a meltdown in a public place, a park or temple or birthday party, it is the parents who are embarrassed. The death of a parent is important in the fact that the parent dies worrying about who will take care of their child or children.

The heroes: Parents

Yes, the parents are cast in two roles, victims and heroes. OK, not just parents. Grandparents, brothers and sisters are also heroes. Teachers, therapists, pediatricians and scientists get supporting roles as heroes as well. They are a community of warriors.

OK, that’s what I don’t like. If I were to make an appeal for funding (which is what I assume “I am autism” is for Autism Speaks), how would I frame it? What would I change?

First, autistics were given no voices in this video. It is all people speaking for autistics. Leaving autistics out is wrong on so many levels. Many, many levels. I could write the entire blog post on that one topic, and still have people pointing out things I missed.

Second, they still pose the discussion as primarily about children. There is at least one adult shown in the videos, but by far most of the video and voiceover is about children. Autism Speaks claims that there are 1.5 million autistics in the U.S. Perhaps it is time they acknowledged the 1.0 million adults and not just the half million children.

Third, I don’t like the victim device. No, I am not saying that autistics don’t face challenges, or that the challenges some face are very, very great. I am not in denial of that. I just don’t like victimizing the people you are purporting to help. It is paternalistic and it is counterproductive to many of the goals that are very important, like trying to help people live as independent a life as possible.

Which brings us to the fourth point:

Fourth, with apologies to my fellow parents, but the autistics really are the heroes. There are kids working harder in kindergarten than some people work in grad school. There are adults working harder just to get through the day than I do at work. If we are supposed to pity the parent who is embarrassed by their child in the park, how about some compassion for the child (or adult) undergoing the meltdown? We are supposed to feel the pain of the parent who wakes up crying wondering about “who will take care of my child after I die”. How about the autistic who will spend most of his/her life without a parent caregiver?

Who, really, is the hero? When will Autism Speaks get it that it is time to stop patting themselves on their own backs and start acknowledging the accomplishments of their children and the many autistics in the world. Autism Speaks could go a long way towards that by integrating their own organization with the very people they purport to represent: autistics. Get some autistics into Autism Speaks and start listening.

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121 Responses to “Why I don’t like “I am autism””

  1. randomguy September 27, 2009 at 17:42 #

    you are, right, misread the actual line, I retract my statement.

  2. bensmyson September 27, 2009 at 17:42 #

    Random, there is no mistaking that my son had a brain injury, the seizures, the fevers, the blood work, the loss of speech etc, every doctor said brain injury, that much is a fact. The rest, vaccines, viruses, etc is speculative, there is no proof, no way to get proof without boring a hole in his head or sticking a needle in his spine or pulling out tissue from his intestines which I refuse to do without it needed to be for a life saving reason.

    Ben’s first specialist that diagnosed him examined him a year later and the first words out of his mouth were, “You guys need to go pop a bottle of champagne, this is not the same little boy I saw last year.” and released him from his earlier diagnosis. We also saw a psychiatrist the same day and he diagnosed Ben as having autism. The second doctor is Ben’s regular pediatrician who remarked that he could not meet the criteria for autism and changed the diagnosis to “developmentally delayed” which actually is a better diagnosis for insurance purposes so maybe he did so to help him get paid, who knows.

  3. bensmyson September 27, 2009 at 17:50 #

    Shanna, Ben is 3 and a half, I posted a response earlier and it didn’t post for some reason. The short answer is that Ben met and exceeded all milestones, within 30 days of his vaccines he stopped talking, stopped making eye contact, stopped humming, singing, mimicing, stopped eating, spinning, tippy toes, stimming, stopped feeling pain, didn’t see him scratch an itch for over a year, never turned with someone came into a room, used to point to things he wanted, respond to command, “Go get the ball and bring it to daddy”. It all stopped. If you are seriously interested you can go to our blog for more of the specifics, http://bensmyson.wordpress.com

  4. Shanna September 27, 2009 at 19:18 #

    My son is 3 and a half as well. I am glad that you shared your blog with me. It always helps to put a human face on these comments. I am sure it must be hard to feel like your child has been ripped away from you. Our son’s now share many common similarities but they did not start out the same. My son never regressed. He never pointed, mimiced, talked, ect…he hasn’t changed. I do not feel a since of loss. I guess that is why I take it so personally when you talk about autism being so evil. For me, autism didn’t steal my son. He is the same beautiful boy I came home from the hospital with. Our son’s may share a common diagnosis but we view them very differently. I am sure you do not realize how hurtful your words can be. How I feel your disgust for autism is disgust for my precious son.

  5. bensmyson September 27, 2009 at 19:51 #

    Shanna, I do not see autism as a person, it is a diagnosis, a label. Autism is not who your son is, your son, my son, is much more than that.

    I refuse to call my son “Autistic”, perhaps when the world understands what “autistic” means then maybe autism will not cause my son to be identified with a label that could mean anything to Joe Six-pack. And thanks to various big mouth celebrities it more than likely now means a spoiled kid dragged from doctor to doctor demanding to know why their child isn’t a genius. I guess that’s why I like the video, it tells my story, I don’t want my son to be “autistic” I hate autism. It stole my son. But don’t get me wrong, I wouldn’t trade him in for anyone else, he watched 10 minutes of football with me just now without squirming or wanting me to change channels, it made my week, my little fellow sitting next to dad watching football. How awesome is that? I have no idea what life would be like had he not have suffered the injury, I suspect I am closer to him, have more of an imprint into his life and have a better marriage because of it, but who knows, it’s impossible to know.

    I do realize that you can not share my experience of loss, I suspect that it would have been easier on me had this been the other way around. Maybe or maybe not but I suspect that that’s the difference between us.

    • Sheogorath December 6, 2014 at 13:28 #

      bensmyson, I do not see boy as a person, it is a diagnosis, a label. A boy is not who your son is, your son, my son, is much more than that.
      Now do you see what people who use ‘person-first’ language do to Autistic people? You separate the thing that makes us who we are from us. If youcan’t exclusively use identity-first language exclusively, at least use it 50/50 with separationist language.

  6. Joseph September 27, 2009 at 20:09 #

    Shanna, I do not see autism as a person, it is a diagnosis, a label. Autism is not who your son is, your son, my son, is much more than that… I refuse to call my son “Autistic”

    That something is a label doesn’t mean that it can’t or shouldn’t be used as an adjective (what you call “a person” which is inaccurate.) For example, little people have dwarfism, but it’s not common practice to call them “persons with dwarfism.” Similarly, homosexuality is a label too, but gay people are not normally referred to as “persons with homosexuality.” Black people are not referred to as “persons with blackness” and it’s not because the color black is a person. Disabled people can be interchangeably referred to as persons with disability or disabled people. Etc.

    I’m thinking you’re just a person with ignorance, Bensmyson.

  7. bensmyson September 27, 2009 at 20:59 #

    Thanks for the bigoted label Joseph. Personally I feel the more accurate label is a person of a different opinion, otherwise we are all ignorant.

    Dwarfism is easy to recognize, as is the color black, it’s simple. And why would anyone say a person is gay or homosexual unless it is to label them as to someone’s sexual persuasion and why is that of any importance? Would you say, this person is straight, or asexual? Someone diagnosed with autism is not so easily defined. It could mean anything and usually does. My son’s injury is much more complex than what the term “autistic” defines him as.

  8. Clay September 27, 2009 at 21:00 #

    Nah, he’s not so bad. I just went and looked at his website. It’s a very touching story, and I began to understand a little bit, about his and his wife’s difficult journey. As for the “autistic” thing, some ideas just take awhile growing into, and it may be that Ben has Heller’s, as David pointed out. And he really doesn’t like Jenny McCarthy, so he can’t be all that bad! 😉

  9. Shanna September 27, 2009 at 22:46 #

    Bensmyson-I am quite sure we are never going to see eye to eye on this matter. You can call your son what ever you choose. It is pretty insignificant in the grand scheme of things. I obviously realize that autism is not the only thing that defines my son. He has his own intrests and his own unique personality. Rather I think of autism as a community he belongs to. And I just see no purpose in tearing that community apart. There are strong, amazing, special people of all ages who belong to that community.

  10. bensmyson September 28, 2009 at 00:04 #

    Shanna you sold me on the community, I’m with you 100% on that.

  11. Anna Hayward September 28, 2009 at 20:48 #

    Maybe we should all drop the warrior analogy and learn some calm acceptance of what is and cannot be changed? I am Aspergers and I have two autistic children, one severely (albeit high functioning). I’ve been through the screaming, non-verbal child stage, which never seems to end (but it does); I’ve had a doubly incontinent 6 year old being uncooperative in the disabled bathrooms; and I’ve had the sleep deprivation – I could get a medal for that. Not to mention the full time job of advocating for my children. But that’s what you do when you’re a parent – its not heroic, its just what parents so. And my kids aren’t heroic, they’re just doing what they need to do.

    People with autism are people. No matter how low functioning, or how able and we deserve respect as equal human beings to everyone else. ‘Autism Speaks’ is not respectful and it reeks of bitterness and anger that life is not how it “ought” to be. Get over it. Life is hard for some, but you have enough to eat, you have a roof over your head… OK, so your kid is different. Its not the end of the world. Your kid just wants to be happy, just like you.

  12. kathleen September 28, 2009 at 21:13 #

    Well said Anna.

  13. bensmyson September 28, 2009 at 23:58 #

    “OK, so your kid is different. Its not the end of the world.”

    Good luck with that “different” thing.

    A guy walks up behind your son when he is a year old, swings a baseball bat and strikes your son square on the head, meant to do it or not makes no difference, your son falls to the ground, loses his ability to speak, he stops making eye contact, from that moment on he is brain injured, I mean different. Yeah that’s not the end of the world, your world at least.

  14. David N. Andrews M. Ed., C. P. S. E. September 29, 2009 at 00:07 #

    BMS: “Either way it is extremely generous of you to take the time to show me one more footpath to poke my head down. Thanks.”

    Welcome. Someone very nice and rich gave me a very nice scholarship to be able to do all this, and I feel that if I can do something to make things less confusing for someone then I should… sort of like that film, you know ‘Pass It On’. Someone does something good for me, so I should do something good for someone else, and hopefully that’s how it goes on.

    There’s some people on these blogs who – for some reason – come on and whinge and won’t be helped; some have seen you as such a person. I didn’t get that impression about you. I wish you all the very best in getting to the bottom of what has affected your son’s development. Way past my bedtime now… work in the morning … g’night 🙂

Trackbacks/Pingbacks

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