Shades of the disasterous NYU Ransom notes campaign:
They make autism into a being with a voice who says:
“…and with every voice I take away, I acquire yet another language”
“…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 will make it virtually impossible for your family to attend a temple, birthday party, a public park without a struggle, without embarrassment, without pain”
Not convinced it is like the ransom notes campaign?
“…I will plot to rob you of your children and your dreams.”
The rest of video is scripted from the perspective of parents, family, friends….pretty much everyone except for autistics, with phrases like:
“When you came for my child you forgot. You came for me.”
I am totally speechless aside from one word for Autism Speaks: why?
edited to add: here is the Autism Speaks announcement.
Left Brain Right Brain 
I need a shower and a drink.
Rather than Autism Speaks, these are the people you should target because they are more likely to respond:
“I Am Autism,” a video by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann,
Well,
Leave it to AS to set up an easy target. Looks like we’ve got our work cut out for us, though it becomes tiresome tilting at the same windmills over and over again.
“We search with technology and voodoo, prayer and herbs…”
At least they recognize they’re using voodoo. 🙂
Joe
“…I will make it virtually impossible for your family to attend a temple, birthday party, a public park without a struggle, without embarrassment, without pain”
I appreciate that you with high functioning children, or are self dx’d or those that can function alone in society think this is a lie….
When it’s the truth.
Try living with a child on the other end of the spectrum. Try having one that people fear initially b/c many, many, many of those that are full Autistic disorder are violent and have major behavioural issues. There’s a reason they are in segregated classrooms b/c unlike mine they cannot function in a regular one. I’m lucky that mine’s easy going, but he is feared until people realize he won’t harm anyone.
Autistic disorder is a disability. It’s not a “cutsie” club. It can’t be helped by simply more support…. I have a question I’ve been dying to ask to all those that claim that’s all they need… Does this include in the bedroom when they try to have intimate relations??? Crass… Oh yeah… Since when is it “OK” that someone cannot have a lover?? That someone should lose out in having a family and friends just because those that are on the same spectrum claim it’s “just fine if they do b/c autism is a difference and not a disability”.
Autistic disorder is not a “difference”…. I’m sorry if the NLD’s, Aspies and HFA’s don’t like it…. It’s a VERY serious disability… and if you don’t believe me, spend some time in those classrooms with those children. Spend some time in group homes with those adults.
Find some empathy and compassion for others.
Anyone else see the irony in the
“Autism Speaks
it’s time to listen”
Slogan at the end.
farmwife2,
you are cordially invited to take your comments to a blog where people don’t believe that autism is a disability, or who think that autism is a “cutesie club” as you put it, because that isn’t here.
Your comment is demeaning and insulting. Either you don’t understand or you can’t understand. Either way, it is time for you to accept the fact that you don’t understand.
“Find some empathy and compassion for others.”
I couldn’t put it better myself. Read it. Live it yourself.
A drink in the shower would be nice.
I don’t know, it seems like Autism Speaks isn’t really showing a lot of empathy for PEOPLE WHO HAVE AUTISM.
There’s a reason why folks with autism will throw tantrums or be frustrated in certain situations or even violent. Even I feel like throwing tantrums at times when I’m overwhelmed and overloaded.
Yet instead of trying to understand why and minimize that…
I don’t know, I’m kind of speechless. The whole marriage thing. And isn’t the money thing part of the faults of various organizations they support? Charging large amounts of money for things like chelation that are dangerous? Why do They have to do this same obnoxious form of advertising?
It makes me so cranky and annoyed.
farmwifetoo, I understand where you’re coming from. “Autism is a difference” can be cold comfort when you’re dragging a screaming child out of the store, when you get rude and snarky comments from strangers, when it’s a struggle to get through every single day and you wish that just once you could experience the things that every other parent does.
However… having said that, the terms “disability” and “disorder” are highly subjective. They simply signify a disadvantage to the norm. I say it doesn’t have to be a disadvantage.
I say that because I am one of them, too. I am autistic, too.
I grew up. I found love. I had kids. I didn’t need any help with that.
I don’t wish to make light of the struggles people face on the low-functioning end of the spectrum. But I do know this: Everyone is different, everyone has different needs. To lump everyone in the same box is short-sighted and, in the end, it does no one any favours.
And so I reject anyone who tells me that my children have no voice, that our lives will be ruined, that it is separate from who we are. It is what it is. And I’ve already proven them wrong.
Oh, and in case it wasn’t clear… this video is absolute rubbish.
Peace and blessings to all.
@farmwife:
I have plenty of compassion for those who have low-functioning autism. My niece is one of them. I don’t pretend to know what it’s like to deal with 24/7, but I do think videos like this are harmful to all families dealing with autism.
It is a disability, but painting sufferers as simply destructive and slightly monstrous does nothing to help families find what little acceptance they can. It also paints autism as a monolithic entity, which we all know is utter hogwash, and serves only to foster misunderstanding and fear.
Clearly Autism Speaks is trying to get people to pay attention and take autism seriously–laudable goals–but they way they go about it is damaging and demeaning in its reduction of autism to some kind of bird of prey, waiting to steal away our children.
There are other ways to focus on the real and serious problems faced by families dealing with autism all the way across the spectrum without painting it as some kind of boogeyman and its sufferers (and my apologies to those who don’t think of themselves as sufferers)as changelings.
Thanks. I can speak for myself, and am qualified to do so. I don’t need anyone speaking for me. If my parents don’t like it, I’m sorry for being the child, but don’t go blaming the child. Stealing our children…lol. They’re not your children. They’re people. Support them.
I have to wonder how many people who signed over the rights to have their footage used knew what sort of video was going to be made with it?
I mean, really. Yes, yes, it’s Autism Speaks, but the title “I Am Autism” could have been taken so many different ways. And even for Autism Speaks, the final product ended up being far worse than what I was expecting.
codeman38,
I agree. I too wonder if the people whose video was used would take this as a good use.
https://leftbrainrightbrain.co.uk/?p=3214
They promised to shine a bright spotlight on autism. Some will interpret the final product as fulfilling the promise Ms. Wright made.
I would not have been one of them.
I’m left feeling appalled. That was so disgusting, so false and so monolithically wrong. Not that there aren’t people who can’t take their autistic kids to a public function (at least sometimes). It’s not that no marriages break up over autism. It’s not that autism can’t sometimes make you alter your dreams. It’s just that the video pretends that this applies to every parent of a child with an ASD, all the time. Those children are portrayed as soul-less, sad, and only complete when surrounded by their warrior relatives.
I’d contact the director, but I’m sure that he was told what tone to take. To make sure that he shocked the public, scared them, and made the parents of the person with autism into heroes and martyrs.
To put it simply, I find the video disgusting and another reason why I hate Autism Speaks.
I am Autistic; I speak for ME!!
That’ doesn’t do much good. Neither does dehumanizing autism.
No wonder the manga With the Light is so much better than anything autism speaks comes up with.
because at least with that manga they learned ways to help Hikaru prepare for big scary public functions by warning him in advance, and teaching him how to cope.
If autism speaks were more useful, rather than saying things like, “…I will make it virtually impossible for your family to attend a temple, birthday party, a public park without a struggle, without embarrassment, without pain” they’d try to understand how autistic people FEEL at events like that and teach how to deal with them!
Furthermore, even NT children can throw tantrums and feel frustrated at events like that. Even as an adult I hate going to parties and stuff like that…
Jennifer,
I would say there is another level to this–as Synethesia has pointed out.
The perspective Autism Speaks takes (again) is how does autism affect the parents and others around the autistics.
To put it another way, Autism Speaks seems to consider “affected by autism” to mean “knowing an autistic”.
Rather be and know the real and authentic self I truly am
Rather be eccentric, flexibly shifting every paradigm
Rather be this wild perfectionist, tweaking these ignored designs
People fear and scare me ; only a few escape their comfort_zones
Minds can have adventures ; minds can be freed from humble coward’s chains
Why be slaves to neurotypical_absolutist stares and frowns?
We will harm the harmless ‘til we make harm itself our only shame
Rather be and know the real and authentic self I truly am
codeman38 has transcribed the video:
http://community.livejournal.com/asperger/2415706.html
Beautiful, Neuroaster.
What is the definition of “high functioning” and “low functioning” autism? Are the definitions related to behavior or IQ?
Autism seems to be divided into severity related to IQ i.e. mild, moderate and severe in the literature. Why dont people use mild, moderate or severe instead of high and low functioning?
Severe autism will probably have a similar effect to any severe psychiatric disease affecting a child in the family and will take away “people, places and things” including the patient. This video seems to pertain to severe autism.
re. severe autism
One mother said of the cost of her son`s care:
“We keep on sending Daniel to Harvard every year for the rest of his life”.
So for severe autism much of the video applies.
I blogged the video here:
http://asannorthernva.blogspot.com/2009/09/i-am-autism-video-autism-speaks-gets-it.html
What the heck is wrong with these people? OMG. Is this a week to be disgusted with people or what?
First off, anthropomorphising autism as an entity to be fought makes them look idiots.
Right, you love your children, yet you’ve created this garbage? It isn’t about the kids; nowhere in that message was it about the kids. Warrior parents. Right.
I have a son who cannot converse at the age of 8, much less undergo cognitive testing. Obviously, he’s what you call low functioning.
Yet, we take him out to eat, to the movies, and so forth. Yes, sometimes it doesn’t work out. The other day we had to leave the movie because he started to cry and didn’t stop. I think he just didn’t want to be there. He stopped when we left. No big deal, really.
If you’re embarrassed by your child, consider that it’s not your child who is causing you to be embarrassed, unless you believe in some sort of magic. It’s your own thinking which causes you to be embarrassed. Any half-decent psychologist will tell you this.
. . . W.T.F. *furious*
http://crackedmirrorinshalott.blogspot.com/2009/09/autspks-once-again-demonizes-autism.html
Personally… I loved the video! I think it brings awareness to how devastating this disorder “CAN” be. Not that it always is, but can be. If a beautiful picture is always painted then why would anyone need to fund research, advocacy, or family services? Why would anyone need to be accepting or compassionate? I am a parent and I am strong and I am fighting this disorder. This video does “speak” for me!
Ron,
I can not and will not sell my kid’s dignity for research funding. I will not and can not trade true acceptance for pity.
Autism is a challenge. It is a disability. It is not a demon.
Ron,
You write
“I am a parent and I am strong and I am fighting this disorder. This video does “speak” for me!” but that’s exactly the issue. Autism Speaks does not care about the autistic individuals that it’s video is harming. It doesn’t care about the stereotypes it is creating, or the tragic framework it is perpetuating. The title “Autism Speaks” suggests that the organization is speaking for autistic people, but this is not the case at all. It doesn’t have any of our interests in mind.
Perhaps if the organization was titled “Parents of Autistic Children who view autism as a tragic disease to be cured Speaks”, this would be more appropriate. However, when this organization claims to be the voice of the autistic community, and when the greater society views it as a source for legitimate autism information, this is where the problem arises. Autism Speaks offers only one viewpoint, but claims to speak for all of us, and the world believes them.
No one is saying that this video is not an accurate reflection for some. But it is certainly not the only, or even the predominant viewpoint, and the ideas it puts forth are a step backward in the movement for society to respect and embrace autistic people as valuable contributors to society, and not merely a burden on the Neurotypical Population.
I am the mother of 3 boys on the autism spectrum….ranging from low to high functioning. This video is appalling. Autism Speaks most definitely does not speak for me or my family.
In reference to the new Autism Speaks “I Am Autism” video….
I am the mother of 3 boys on the autism spectrum….ranging from low to high functioning. This video is appalling. Autism Speaks most definitely does not speak for me or my family.
I liked this video. Sometimes the truth hurts. Sometimes people need truths to hit them right between the eyes.I may not agree with everything on the video, but I BELIEVE it is powerful. I am the mother of a much loved 15 year old son, with autism.
“Sometimes the truth hurts. ”
Once again, sums up my message for Autism Speaks rather nicely. This video is bad.
Powerful does not equal good. There are many ways to accomplish some of the goals of the disability community. Raising awareness (and money) through degrading autistics as possessed by the demon “autism” is not a good exchange.
By the way, what truths? Is autism a being that steals children? No.
I was very offended by this video. Very. I already disliked Autism Speaks but this goes far past that. I may be just one person, but I am working hard to teach people who work with/know my boys what autism really is (and what it isn’t). This just took about 100 steps backwards for me and everyone else doing the same thing as I am.
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.
The short film “I Am Autism” was created by two fathers of children with autism – Billy Mann, a Grammy-nominated songwriter, music producer and Autism Speaks board member, and Alfonso Cuarón, an Academy award-nominated film director. Set to a personal poem by Mr. Mann, the short film features home video footage voluntarily contributed by families around the world affected by autism. 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.
All individuals with autism and their families, regardless of their perspective or the nature of their disorder, should have the power to be heard.
No one perspective can ever be the definitive voice of autism. I encourage everyone in the autism community to acknowledge the myriad voices and have tolerance for the spectrum of opinions.
In all seriousness–they can say “mission accomplished”.
They inspired me to voice my opinion.
This is all well and good, but they don’t seem to have much tolerance for OUR opinions.
Not to mention our feelings.
THE FIGHTBACK BEGINS.
This film shows how you can make a film about the negative aspects of anything.
🙂
Paul, that is a cute film!
Very sad to make these persons out as menacing and hateful beings. We love our 40 year old son with Aspberger syndrome. And he is loving and has learned over time to become a respected member of our community. We celebrated our 50th anniversary this year too. SO THERE
Here is a letter I sent to about the Concert for Autism Speaks to,
Katarina Lundblad
Director of Corporate Relations & Sponsorships
Carnegie Hall
881 Seventh Avenue
New York, NY 10019-3210
Phone: (212) 903-9615
Fax: (212) 424-2028
klundblad@carnegiehall.org
I also wrote many other letters. Not sure how great they are, but did my best. I thought hitting Carnegie with emails may be a good avenue. Take care all!
Dear, Katarina Lundblad Director of Corporate Relations & Sponsorships
I am writing you in regards to The Concert for Autism Speaks on November 17th. As a mother of two autistic children I am appalled at this new ad http://www.youtube.com/watch?v=HDdcDlQVYtM Autism Speaks is promoting. Words can not accurately describe the anger and sorrow I felt when I saw it. My marriage is happy! My children have morals! My children cost no more than raising any other child. Our family is happy, we don’t need this type of degrading bleeding heart manipulative ad to raise funding. What we need is greater awareness of how well autistics can succeed, and bring families closer together. We need ads that promote understanding. My family and community understand and love the children we have. This ad promotes family and community to refuse to give a chance to the understanding understanding and acceptance of autistics, and demands autistics destroy lives,. My children have been raised to have confidence and pride in themselves. This ad, which is designed to do nothing for the actual autistic people, but only to raise money for an organization who has clearly forgotten autistics are aware of what is said about them, and have feelings. I hope you will stop this disgusting disingenuous ad. I can’t imagine how crushing it would be to the self worth and, self esteem, for my children or any autistic for that matter to view this atrocity. Autism Speaks has forgotten to have empathy for the people they claim to care about. Remember we are all humans with feeling, and words hurt. There are other good organizations that this benefit could choose to support, such as http://www.autisticadvocacy.org/ Many people in the autism community our outraged at Autism Speaks for the way they choose to run and campaign for their organization. I know there are protests being rallied as I write this, as well as many letter writing campaigns. I would like to take this opportunity to ask you, to please reconsider what this benefit concert should be about, who it should be in support of, and if this is good for your public relations?
Sincerely,
Amber
I guess I’m confused abt. the msg. Accept autism but look for a cure? Love and support your child w/autism but fight to obliterate this thing that makes her unique?
W/out looking too deeply at their mission, I would guess that they are an organization advocating for a cure and providing support/education for parents/caregivers, NOT an org. that provides outreach/a forum for those w/autism. The beginning is jarring and presents a perspective which is real for many families, but it is not the only perspective…nor is everyone on the spectrum of the same mind abt. their autism.
To me the question of “functioning” is irrelevant – I work with and teach (in a standard HS setting)a 17 yo w/autism, who is “high functioning” when his environment is stable – he speaks, writes, expresses himself, interacts socially, etc. He easily (but infrequently) becomes “low functioning” when things are unstable – non-verbal, physically dangerous…he is after all, an individual.
At this juncture in his life, he clearly understands the constraints his autism can put on him and he is angry. He writes, “I hate autism…I hate being born w/autism…I hate having autism…I hate that people have to “understand” me, they can’t just know me…I would cure it if I could”. He wants to meet a girl, have a girlfriend, a neurotypical girl b/c “I don’t want a girl like me, I want a girl who can talk and have conversations w/out difficulty”.
This young man has had services and support since he was 4 yo. He has grown up in an accepting community and family. He is surrounded by msgs. of acceptance. Until he was 16, he was always happy. He is still happy, and still shining in his own world and ours, but I feel for him every time he comes to the place of hating autism, b/c I can’t give him anything to change it, I can’t offer either a cure or a more accepting world where people can just know him w/out having to understand the reasons for his inability to be in crowds or his spontaneous laughter or his different voices or his quietness or his sudden flare-ups.
Maybe some people w/autism would choose a cure, who knows? I don’t…they do. Every individual’s/family’s experience of autism is different, no organization or video can “speak” for all of us.
I have not changed my views, Sullivan. There are plenty of truths in that video for me. May I speak for myself?? I will also speak for my son. Much has been stolen from this family. From my entire family. Years before autism entered our lives, I raised 4 children with no disabilities. I know the difference. I BELIEVE autism does steal lives. My son wants to be “NORMAL”. I cannot make that happen. The blog above mine says “maybe some people would choose a cure”. My god,I will be standing 1st in line,with my son in tow for “THE CURE”. No doubt.
I didn’t say you had changed your views.
Certainly. That’s why we have comments. In fact, I greatly appreciate it when people with opposing views comment.
My kid is still alive, as am I.
I think it is beyond maybe. Many people would chose a cure if one existed. Many parents would chose a cure. Go ahead and stand in line for it, I won’t be standing in your way.
I won’t stand in the way of an autistic who wants a cure, either. I do think that such a decision should be made in an environment where the autistic is receiving adequate support.
I don’t think a world that characterizes autistics as having had their lives stolen, or that their disability steals the lives of others is a world of adequate support.
Or you need to step on out of your experience,right into mine. This is not a world of adequate support, not by a long shot.
Precisely my point.
Assume a cure exists some day. Society says, “you can take a cure, or you can take the crappy level of support we offer.”
That amounts to coercion.
I will take the cure every dang time.Coercion or not. O.K, I give!!!! It’s hard to be heard by a ” right fighter”. Everything you say is gospel. What I say is crap. Good luck to you and your child.
I agreed with what you said about supports. I disagreed respectfully with the conclusion you reached based on that. Why couldn’t this remain respectful? Why claim I am putting myself up as always right? Just like you, I am voicing my opinion here.
Can’t you do exactly what you asked of me: put yourself in my shoes and try to understand my point of view? I am not saying agree with it, but try to understand it. You clearly do not, since my point of view is not that I am a “right fighter” or that I somehow speak gospel.
My real opinion is that a lot of time is wasted talking about the supposed cure for autism. Parents have been looking for the cure for 40 years. That’s fine. But, parents have been left unprepared for their children to grow up for all that time.
In the next 20 years I’d rather have worked out improved supports for autistic adults than have worked out the philosophical ramifications of a non-existent cure.
Respect me, I said the word crap. Shoot me. This will RESPECTFULLY, end my dialog with you. I do not see a cure, perhaps ever.We all know our world will not be able to cope with the aging autistic population. Our world is not dealing well now.We are in a world of trouble.The fact is,the bla, bla, bla of what most Autism groups put out there, is what made that video appeal to me. Clearly in the minority, but I’m o.k with that. I will continue to love, support and advocate for my awesome son.
Lori,
perhaps I should have been more specific.
I don’t care about the word crap. I was bothered by the way you dismissed my response with phrases like “gospel” and “right fighter” and other phrases that don’t apply to the way we were discussing this.
I would say we are not prepared to support the children who are growing up. I would further say that this is because people are spending all their efforts chasing vaccines. This leads these groups to deny the existence of the adults that are out there. This leads groups to not advocate for adults.
The public (for right or wrong) responds to children. We, as parents of autistic children, have the power to focus attention where we think it is important. We can follow the example of autism parents for the last 40 years and focus attention on ourselves. Or, we can prepare for the future and start changing the way society supports adults.
In 20 years a whole new generation of parents will be ignoring us and our adult children. If change hasn’t happened, it is our own fault.
I plan to at least go forward fighting.
This wasn’t completely fair. This really applies to the last 10 years. But, the idea of chasing a cure over preparing for adulthood goes back probably 40 years.
Looks like farmwifetwo now has taken her crusade to let everyone know how SHE struggles, to this blog too. Farmwifetwo, nobody is going to cry cause you have to clean your child’s doodie. We do not want to hear about what a martyr you are, having an Autistic child.
Please, go find a support group that will coddle and goo goo gah over your sad life. We’re trying to make a difference and make life better for people like your son. We’re not going to babysit you.
Sullivan, what you said reminded me of an episode of Spongebob where Gary started to act like a rabid snail. So Squidward was running through all the vaccinations seeing if Gary had received them. One of the vaccines he mentioned, was one for teen angst. LoL
Sullivan, no need to be rude to farmwifetwo. You seem to thrive on your ability to chastise and negate feelings of anyone who does agree with you or jump on the ” AUTISM SPEAKS, SUCKS- band wagon. I thank God you are not the voice of Autism.Don’t respond, I will not be put down again.
[edit–I changed the formatting because the block quote of my previous comment didn’t come out correctly the first time)
You do realize what a strange comment this is, don’t you? You can come here and post what you like, but I can’t?
Here’s my comment to Farmwife2
https://leftbrainrightbrain.co.uk/?p=3208#comment-64045
She came to this blog and, based on an incredibly incorrect assumption, made a number of insulting statements.
I’ll say it again–if she wants to argue with people who see autism as some “cutsie club” she should go elsewhere.
But, hey, if you can read my mind as to what I “thrive on”, perhaps you have a special skill I don’t know about. Perhaps you and Farmwife2, who has diagnosed my child as HFA without any data, much less having ever seen the kid, should get together?
Or you with you over inflated ego, should get a clue.You do negate peoples feelings constantly.
Lori, Sullivan isn’t being rude. I’m happy to be though. Get over yourself and stop crying about it. You’re just one more commenter like me, like Sully and like FW2.
So Kev, are you by chance Sullivans husband?? Crying, are you nuts?
Lori,
Let me put it in your own terms:
I could claim that Farmwife2 negated my feelings (and the feelings of many others) by ignoring the actual discussion and then proceeded to further negate my feelings by making insulting comments based on her misunderstanding.
I don’t exactly see you complaining about that. I don’t need you to, either.
If correcting her misunderstanding (not for the first time, either) and pointing out that she her comment was insulting is “negating her feelings”, I guess I am guilty.
By the way, would you like to discuss how the video negates the feelings of many autistics and parents? Or hadn’t you noticed that little bit of irony?
Here’s one of the things I can’t figure out. Lori says:
“I will continue to love, support and advocate for my awesome son.”
Absolutely nothing she has said describes an awesome son. How can a son who causes her such misery be deemed awesome? I wonder whether she is being insincere in her sentiments. Some people who hold her position perceive a split between autism (it) and the autistic person. (Hate the sin, love the sinner?) Parents of children with Down Syndrome don’t see things this way. I don’t get how a child whose behavior is insufferable can at the same time be awesome.