Thursday, October 1, 2009

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.

44 comments:

meb44 said...

John --

I have a daughter diagnosed with PDD-NOS and you truly inspire me.

Thank you!

Hammie said...

nicely reasoned. xx

Ray said...

While I will concede that being on the spectrum can be frustrating and disabling at times, I have to agree that saying it will totally ruin any chance of a "normal" life is a counterproductive and dangerous stance. That kind of message reminds me of those black and white medical films they'd show in school from the 40s and 50s - posing unresearched theories and personal opinions as fact, as well as filling people with a sense of panic.

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.

Jenn said...

I see what you are saying and I agree that for those of us who know what autism is, we certainly don't assign a personality (evil or good) to it. However, don't you think a bold campaign might be effective in at least waking up people to show others that the community is banded together to win over this disorder that disables so many? I don't know if I would create such a video but it certainly is thought-provoking and sometimes that is the primary goal.

Shell said...

John,

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.

RayNelsonRealtor said...
This comment has been removed by the author.
in the deep end of the pool said...

sure the Bush Administration and some Christian conservatives didn't fund this? it could be the Devil!

Molly said...

I think there's enough misunderstanding about spectrum disorders among the general public. Perhaps I'd feel differently if my son had full-blown autism but I personally love these Aspergian kids, and I know a lot of parents who feel the same way. I don't want a cure. This isn't cancer. I don't want a world where everyone is the same. I think a campaign like this plays to our fears, and most likely generates money accordingly. I'd much rather see a campaign that shows us the success stories, that shows how to lead our kids to happy productive lives, while allowing them to remain who they are.

John Elder Robison said...

I usually avoid watching videos like this; seeing this one reaffirms that position for me.

Laura said...

Thank you so much for writing this - it puts into words perfectly what I was thinking when I saw the video. It felt so sensationalized and ugly to me, which isn't how I think of my child AT ALL.

Jeannene Christie said...

Hi John,

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

The Pitman Geek said...

I agree completely with your sentiment. An ad like this can do so much more harm than good and I do not want me or my son being classified in this way (as something dangerous that needs to be avoided).

I'm saddened that a group that has done much to support autism can be this short-sighted.

Shell said...

OK, now I've watched it and I'm truly disgusted. Instead of trying to "defeat" autism, and my son is classic autism, we need to be focused on changing OUR view and how WE as parents, caregivers and community members do things! This is disgusting that they have campaigned like this and I agree, no doubt engineered to generate donations.

Was this exclusively an internet video or did they use it on TV as well? Just curious.

Caitlin said...

I agree that raising a child with autism takes a toll financially and to your relationship but we're definitey not doing it on purpose, like the video implies. I've never thought any of those things. If anything I don't want to be a burden to anyone. I don't understand why an organization that exists to help autistics would portray us in such a degrading way.

Pagan Sphinx said...

I don't like the video at all. I agree with you on all counts.

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.

Brenda said...

Well said! All of it. An ad can create a lot of buzz without resorting to fear-mongering (just look at all the popular Super Bowl ads). Generating fear is the lowest rung of any campaign, including this one. My son has autism and this is NOT how I view it at all. Thanks, John, for your view.

Chasmatazz said...

Finally a blog posting I can get behind. I particularly liked this passage:

"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.

Lisa said...

"sure the Bush Administration and some Christian conservatives didn't fund this?"

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.

Laughing Stars said...

Very well said, John.

Betelgeuse said...

It's a rarity finding a realistic balanced position, thanks John.
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.

Amanda said...

Haven't seen the video and have no desire to either, your write up was enough to put me off.

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.

Lisa Jo Rudy said...

One commenter suggested that the video is a good way to let the world know we're banded together to take action against autism.

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)

Kim Rossi Stagliano said...

Autism Speaks job is to raise money. How else to pay their Science Officer (who isn't sure there's an autism uptick) $600K last year? Look at Mark Rothmyrs (SP?) LinkedIn page - title? "Fund raiser." The smiling faces and happy kids who can't play baseball are for the advertisements. The harsher side is for fund raising. Now many HFA or Aspergian adults earn six figure salaries, like those doled out at AS? In their 5+ years of existence, how many families have they helped with child OR adult issues? John, I've told you for a few years now, AS does not have the interests of people w/ autism at its heart - not you and the HFA/Aspergian segment or my profoundly disabled children, for whom a cure is most desireable. The Wright's denounced their own daughter a few years ago - to protect the flow of money. And I can assure you - they pursue treatment for their grandson - whose GI problems have decimated him. Katie Wright writes for us at AoA and is most honest. For those of us w/ kids facing life in group homes or institutions, we darn sure want to bring them as far along as we can. For those higher on the spectrum, we want fairness, housing, and JOBS and college help and more. The smaller "fringe" groups that so many HFA people decry are actually working very hard to help all people w/ autism. NAA, TACA, Autism One - doing such hard work to help individual families - and it's NOT all about vaccines. AS asks us, the autism families, for money and then sends it to Two Park Avenue. They don't speak for me. Never have. Kim

Ray said...

I think the main problem is Autism Speak's stance on the spectrum in general - it's a disease that must be cured and is robbing us of our children. Nothing will change their views, just like how the the other other groups, the ones that preach of tolerance and changing society to make us feel better, aren't going to change theirs.

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.

Paulene Angela said...

Have you seen this promotion from the UK

http://www.talkaboutautism.org.uk/

The picture says it all.

Thanks for your super post John.

jonathan said...

Granted the video was a bit over-the-top. I would have done it a bit differently if it had been a video I created. But sometimes harsh realities of people on the spectrum need to be portrayed in order to generate fund raising so that hopefully at some point treatments and a cure can be found.

Lisa Jo Rudy said...

Jonathan - I wish that they were actually presenting "harsh realities": crazy and even abusive educational situations, red tape everywhere, no access to SSI benefits, etc.

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

Stimey said...

Really well said. Thank you for writing this. I agree.

Jordan said...

This is an excellent way to think about this problem. That video was just awful, thanks for this constructive solution.

Navi said...

the video is beautiful when muted.

the audio voiceover is offensive.

Michelle O'Neil said...

As a rule I'm not a fan of AS, but I really don't know what they were thinking with this one.

AAF said...

The only thing like this that I can recall seeing is Jerry Lewis and company vs MD.

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

Gavin Bollard said...

The video confuses me. On the one hand it seems to be saying "autism isn't a great thing and we're not going to give up". It shows a lot of love at the end.

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 Jo Rudy said...

It's tough to characterize "autism" anyway: everyone on the spectrum is different. My son is certainly delayed and challenged, but his issues have nothing to do with lack of affection. In fact, he's among the huggiest people I know!

Lisa

Trilogy said...

John after waching this I think maybe you took to heart the negative connotationd of this video. I think the message is twofold, the negative and the positive;

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.

kyra said...

i love what you say here:

"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."

Sharon said...

Well said, John. I agree with you, and don't think they should be allowed to share their fear tactics. It's very counterproductive and extremely negative.

Lee said...

The video angers me because it draws parallels between autism and evils such as cancer. Autistic people are different because their minds are different, they are who they are. They are not an evil to be expunged from the landscape, a plague to be cured! As an aspie I find most NTs boring, even stupid, and this vid seems to be produced from a stereotypical NT view of autism. Yes, my daughter is AS, yes it sucks when she's having a bad day, melting down, screaming, breaking my stuff, getting calls from the annoying school psychologist....but she's my daughter, she's not a terrible person. She's a gift to us, and we love her.

twinmommie said...

thank you...you said exactly what I would try to say but would be unable to convey to others....thank you!!!

Sarah said...

Hi John,

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

David said...

Good Morning John,

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

vintagesue said...

i'm almost afraid to watch this video. i don't think i have the strength to waste my time with hyperbole and blah, blah, blah. i hope i don't offend anyone by writing that, but i can only take so much sensationalism.
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.

vintagesue said...

just realized i spelled benefit wrong. i'm a dork.

Lee said...

I realize that perhaps my wording in my first post was a bit harsh, I suppose I was having a bad day (week, month maybe)... I do work with non-autistics,and am married to a wonderful woman who somehow bears with me through it all. I am still upset by the seeming stigma conveyed in the video, and still sensitive about my daughter, but I apologize if I was being incendiary in my "NT bashing" it apparently was not a good day for me....Lee