Some thoughts on the Autism Speaks video
I finally watched the infamous Autism Speaks “I Am Autism” video. I had to hunt to find it, because so many parodies have popped up that the Google search was overwhelmed. The first part takes as its theme, “I am autism, and I will take your money, your marriage, your family and I will ruin your life.” That’s an awful lot of intent to attribute to a neurological difference in the brain.
For those of you who didn't see the video here is a link http://www.youtube.com/watch?v=HDdcDlQVYtM&feature=channel
I cannot recall any similar instance where legitimate scientists ascribed malice or forethought to a disease, difference, or human condition. Cancer kills you, and so does heart disease, but no one says, “I am cancer. I will take your money and take your life.”
Come on, folks.
Autism can be a serious disability. I don’t know any knowledgeable person who would disagree with that statement. But the disability comes about by natural action. Autism can cause serious problems, but they are not the result of malicious action on the part of an “evil force” as depicted in the film.
Frankly, it’s shocking to me that an advocacy group would countenance the production of such a thing.
Suggesting an autistic child is “possessed” by some malign force is something I for one would never do. I want to get rid of the disability aspects of autism as much as anyone, but the mindset depicted in the film does not get me there. I hope Autism Speaks rethinks this campaign and comes up with some different video.
The fundamental problem with the video is that it says, in essence, “autism is bad.” That moral judgment is then inevitably applied to people with autism. That’s wrong, and an organization that purports to exist to help autistic people should know better. It has the same corrosive effect that calling me a retard had, forty years ago. I don’t like it; in fact, it makes me pretty angry.
I have no problem saying, “autistic disability is undesirable.” I believe that statement is true.
Moral judgments such as those in the Autism Speaks video have no place in the description of disabilities, diseases, other health problems.
So how do I think we should attack “the problem?”
First of all, we should recognize that the autism spectrum is very broad, encompassing individuals who perceive themselves as totally disabled and disadvantaged by autism to fully functional people who believe the exact opposite. We must accept that both points of view are valid, for those individuals. My gift can indeed be your disability, if it affects you in different ways.
That is the key to agreement on how we may address the problems posed by autism.
We can say, I want to solve the problem of autistic speech impairment. Or we can say, I want to find out why some people with autism have serious gastrointestinal issues. Those are specific problems which can and will be addressed through research.
That’s the right way to go about this. Pick a specific component of autism, and figure it out. Then find out how to remediate the disability it causes. Having done that, the people who feel disabled by that particular thing will have a solution at hand, which is wonderful and empowering.
Complex problems are always solved one step at a time, and autism is one of the most complex medical puzzles science has ever tackled. We’d all do well to recognize that, break our work down into manageable steps. Then we can put the sensationalism, moral judgment, and showboating aside in pursuit of a common goal.
For those of you who didn't see the video here is a link http://www.youtube.com/watch?v=HDdcDlQVYtM&feature=channel
I cannot recall any similar instance where legitimate scientists ascribed malice or forethought to a disease, difference, or human condition. Cancer kills you, and so does heart disease, but no one says, “I am cancer. I will take your money and take your life.”
Come on, folks.
Autism can be a serious disability. I don’t know any knowledgeable person who would disagree with that statement. But the disability comes about by natural action. Autism can cause serious problems, but they are not the result of malicious action on the part of an “evil force” as depicted in the film.
Frankly, it’s shocking to me that an advocacy group would countenance the production of such a thing.
Suggesting an autistic child is “possessed” by some malign force is something I for one would never do. I want to get rid of the disability aspects of autism as much as anyone, but the mindset depicted in the film does not get me there. I hope Autism Speaks rethinks this campaign and comes up with some different video.
The fundamental problem with the video is that it says, in essence, “autism is bad.” That moral judgment is then inevitably applied to people with autism. That’s wrong, and an organization that purports to exist to help autistic people should know better. It has the same corrosive effect that calling me a retard had, forty years ago. I don’t like it; in fact, it makes me pretty angry.
I have no problem saying, “autistic disability is undesirable.” I believe that statement is true.
Moral judgments such as those in the Autism Speaks video have no place in the description of disabilities, diseases, other health problems.
So how do I think we should attack “the problem?”
First of all, we should recognize that the autism spectrum is very broad, encompassing individuals who perceive themselves as totally disabled and disadvantaged by autism to fully functional people who believe the exact opposite. We must accept that both points of view are valid, for those individuals. My gift can indeed be your disability, if it affects you in different ways.
That is the key to agreement on how we may address the problems posed by autism.
We can say, I want to solve the problem of autistic speech impairment. Or we can say, I want to find out why some people with autism have serious gastrointestinal issues. Those are specific problems which can and will be addressed through research.
That’s the right way to go about this. Pick a specific component of autism, and figure it out. Then find out how to remediate the disability it causes. Having done that, the people who feel disabled by that particular thing will have a solution at hand, which is wonderful and empowering.
Complex problems are always solved one step at a time, and autism is one of the most complex medical puzzles science has ever tackled. We’d all do well to recognize that, break our work down into manageable steps. Then we can put the sensationalism, moral judgment, and showboating aside in pursuit of a common goal.
Comments
I have a daughter diagnosed with PDD-NOS and you truly inspire me.
Thank you!
One would think that, as an advocacy group, Autism Speaks would be less sensational in their message. Yes, it poses hardships and yes, it impacts some people to the degree that they will need lifelong care, but there are plenty of others who adapt and function to a point where they can lead fruitful and fulfilling lives.
Personally, this ad disgusts me and the group doesn't deserve any of my hard-earned money. I prefer to donate to a organization that actually aims to help, rather than shock and scare people.
Thanks you for your thoughts and all you do for people on the spectrum everywhere. You candid honesty in your book definitely made me see my son differently. He will turn 6 in November and has a long road ahead of him...but I often think of things you said in your book and try to find what it is that turns him on and excites him and work with it instead of against it.
I haven't watched the video you review here, but after reading what you said, I'm not sure I want to! That's terrible that they didn't think it through more.
Thank you for posting your response to this video. I also did not like the message it is saying about autism. Autism is not the enemy! Autism is a developmental difference and I agree with you that we can address specific issues related to autism (gastrointestinal, communication, etc.) to promote well-being of the child, family and integration without demonizing autism. Rather, the way to help is through acceptance and celebration of differences -- autism is a gift because it allows us to open our hearts and minds to new ways of being.
www.LovePlayLearn.com
I'm saddened that a group that has done much to support autism can be this short-sighted.
Was this exclusively an internet video or did they use it on TV as well? Just curious.
I have a hard time endorsing most organizations that say they advocate on behalf of autism. Some may be good but I'm very skeptical until I know the org's mission well. Meanwhile, I listen to people who live with it or who are dealing with it because a loved one is on the spectrum.
I'm not sure which org coined the slogan "the autism puzzle", but I don't like it. To get to know a person, any person, takes time and effort and acceptance.
There may never be a medical cure for autism but there is a pain reliever: tolerance.
"It has the same corrosive effect that calling me a retard had, forty years ago. I don’t like it; in fact, it makes me pretty angry."
That about sums it up. Thank you, John.
really? we're going to blame Bush for this video? What a stupid thing to say. Christian conservatives are more apt to be pro-life, any life. Autism Speaks seeks to promote cure at any cost, including prenatal testing and removal (eugnenic abortion) of the plague they see as autism.
If my child would ever be able to live a relatively independent life, I'd be writing on neurodiversity blogs about the need of accepting differences, but when difference means severe disability, it's not just accepting it as it is. Of course it doesn't mean demonizing the condition, it's ridiculous, but on the other side, let's suppose, hypothetically, that people who have benign tumors decide to get united in an oncodiversity community, demanding that people who haven't tumors, the oncotypicals, left them alone and stop trying to fix people who have cancer. Please I don't mean equaling autism to tumors, it's just a hypothetical parallel to illustrate my view. So while recognizing most in the spectrum don't need anything but respect, we can't forget that at the left end of the spectrum autism is disabling.
Sounds like scaremongering, which seems to be the fashion these days. For example, in the news recently a girl died hours after having her Cervical cancer vaccination. That was the link and all we got for a day or so, then it transpires actually she had a tumour and was not in good health so it had nothing to do with the vaccine what so ever. How many girls and/or their parents will now not have the vaccine and suffer the worst consequences? HPV vaccines are controversial but I just wanted to illustrate the sensationalist world we live in. It seems we all have to do our own research into what really happened, what's really going on, you can't believe everything you see and hear.
Problem is, it (not surprisingly) has done just the opposite: shown us to the world as a scattered horde of bees all trying to sting one another.
Even worse: to me it means that the biggest autism org in the world is paying NO attention to the community it's supposed to be serving. The message is identical to the "ransom notes" campaign -- and Autism Speaks certainly should have seen the reaction coming a mile away.
I HATE that autism is presented like a demon king grabbing our children and replacing them with faerie changelings. It suggests that we are out looking for an exorcist or hero -- not research, education, or support!
Lisa Jo Rudy (www.autism.about.com)
I've found a lot of *positive* feedback about "I Am Autism"; there are people out there, mostly parents, who feel that the film's narration was accurate and truthful. Many of them do see autism and PDD as a disease, a curse, a burden that must be squashed in order to give them the "normal" children they believe they deserve. They are entitled to that opinion, and we are entitled to disagree with them.
Yes, it's true that many of us are on the high-functioning side and can lead "normal" lives if we receive the proper tutorials, but the others on the low-functioning extreme - the ones whom this video was aimed at portaying - will need lifelong care and endless amounts of patience. This is the side that people generally think of when they imagine autism, and this is the side that AS panders to.
http://www.talkaboutautism.org.uk/
The picture says it all.
Thanks for your super post John.
Instead, they're making up a reality that is closer to a videogame than real life: an evil being who is stealing children and Must Be Stopped.
If only it were so simple!
Lisa
the audio voiceover is offensive.
JL and MDA speak as if MD were a diabolical force with an agenda, and likewise, those with MD are seen as pathetic and helpless objects, and never quality human beings.
I guess they've decided to rip off the Jerry Lewis formula.
Autism and AS are not evil. They just are. The whole problem with this malevolent force logic is that the next step is that someone must have caused it. Hence the whole Vaccine thing. I suppose we can be happy they aren't blaming the Jews. At least not yet.
Being born on the spectrum is of course, a disability and I wish I hadn't been. But all this fear stuff is not going to solve a thing. I wish they get away from the blame stuff, and the demonology, and more importantly, they would stop viewing spectrum people universally pathetic and helpless.
AAF
That's all very well - and it might make a nice message if it weren't for a few problems...
1. They don't just say it's bad, they rub it in to the point where I get the feeling that it's saying - "if you find it in your family, run like hell".
2. They blame all sorts of unrelated problems on it. It's true that it adds to the stress of marriage. It's not true that it breaks marriages up. In all honesty, the marriages which break up due to a bit of extra stress would often have hit the dirt as soon as any form of extra stress was present.
3. They make it look like the fight is all from the outside in. There's nothing in the video that shows the autistic individual fighting the condition.
4. It's unclear how they're going to fight it. What do they want? It looks like they plan to "hug the problem to death".
5. The autistic person is shown as entirely passive. This is similar to 3 but not quite. It's not just about fighting, it's about initiating hugs, doing artwork and showing that autistic people can and do take their place in society.
Too much negative and not enough positive - combined with a very unclear message.
Lisa
There are many negative pitfalls involved for many parents and individuals on the spectrum, not everyone is equiped to handle this and families, marriages and finances DO suffer. The second half of the video speaks of fighting back - the positive side.
Personally, I have suffered the initial struggle, the family upset and stresses, the marriage difficulties - how can you be a whole parent to all your kids when one is overwhlming your resouces? how can you nourish your relationship and be whole partner when all your emotions and energy are being devoted in great part to one child, or when your energy and financial resources are being sapped by having to fight with school administrators and pay for lawyers, doctors and so on just so you can get the services your child is entitled to by law?
I have had to sit in school with my child every day for nearly two years - what do you think that did to my business ? Last month I got down to $1.82 in my checking account.
John I respect you, but to use your words; Come on, folks. The bad stuff is real - the difference is fighting back, supporting, networking and protecting our precious, special and wonderful loved ones, who happen to be on the spectrum, and - surviving.
"Then find out how to remediate the disability it causes. Having done that, the people who feel disabled by that particular thing will have a solution at hand, which is wonderful and empowering."
For some reason, I have not heard of your book! Granted, I've been a little away from the Autism community for a while... but still! Started reading today... very fun stories :) My son has Asperger's and I would have to say wasn't as clever as you -- he's 18 now. But his Dad -- yep, he's got stories.
As far as the Autism Speaks video -- I liked it. Autism had a huge impact on our family -- pushed everyone to their limits and created a lot of conflict (approaches, beliefs on what to do, etc). Our marriage ended partly due to the stress and lack of awareness/acceptance but especially support. There are many other reasons too -- but having a special needs child adds a dimension to a family that can create lots of chaos... That said, the audience that would best benefit from this video are people who do not get this! Could be anyone. But those people not experiencing the day to day problems/decisions/etc have NO clue :) So, I liked it for that reason.
Thanks!
Still reading...
Sarah
I was at the Barnes & Noble on Saturday in Burlington and you were just great. I had my aspergian son with me and he did his best to listen but he did wander away but came back as always. Oh well. I read the book some time ago but to hear you speak really was fantastic.
I have no interest in what AS has to say about anything. I do my best for my son everyday and I really do not care what anyone else thinks. There are bigger fish to fry.
PS. I forgot to ask you to wiggle your ears....Take care
i deal with specifics and what resources i can get in my community instead of reaching out to a huge group that doesn't directly benifit me or my child.
i love this post. i am so grateful for your logic that 'speaks' about taking each part of autism and finding ways to help or fix those that will benefit people on the spectrum...and a spectrum it is.
i don't need a large group with a broad picture...i need resources and assistance with one aspect of my son's spectrum disorder at a time. if i knew why he had to blink his eyes and make swishing noises for an hour straight instead of having a two-way conversation about what was happening around him, i would be way happier than having somebody define autism as evil. and once we help him communicate better, than we can tackle the bed wetting, the paper eating and defiance about simple things just don't make sense in his world. if somebody would advocate that for me, i'd gladly smile and pass it on.
thanks so much for always challenging these topics and this very broad subject of autism. you are a resource i can count on.