Thursday, August 16, 2012

Making Peace with Autism Speaks

Sometimes it seems as if humanity is doomed to argue with itself over specifics forever, whether they be Star Wars vs Star Trek, Windows vs Mac or Islam vs Christianity.

The truth is that although we're all thinking about similar concepts; science fiction, computers and religion, there is no one "correct" answer - just our own personal opinion. Yet we spend so much energy fighting the battle that we have little left to spend furthering our own causes. 

That's how I feel about the whole "autism speaks" debate. Everyone will believe what they want to believe and it's not up to us to change the opinions of those who already believe. Instead, we need to move forward with our beliefs and our agenda and male sure that ours is compelling enough to catch the attention of the undecided.

Why we feel that message of Autism Speaks is not the best one
So, why all the antagonism towards "Autism Speaks", an agency which is raising money for "Autism"?  Why aren't we on the same page?

The answer is simply a matter of focus;

Autism Speaks is focussed on Autism itself, not on the individuals who have it.  Their definition of "living with autism" is all about the parents, who "have to live with the affliction" rather than on the child who has to fit into a society which doesn't readily accept them.

The focus of their funding is directed towards the search for a cure but think about this; Any magical cure which is discovered today will need years and years of testing before the side effects are fully known and human trials can begin.  By that time, the kids of today will be all grown up.  Even if they were "cured" immediately, they would have missed out on years of education and social interaction. A "cured" person isn't going to simply fit back into normal society like a .... well, like a jigsaw puzzle piece.

Sadly, the truth is even worse because the search for a "cure" keeps bringing them back to prevention, which means early detection in the womb - which of course means, abortion.

Think of it this way.  Perhaps you have something different about you? Maybe you wear glasses?  What if an organisation told you that their aim was to remove glasses from the population and that their means of doing this would be to abort people like YOU in the womb.  Then, in the same breath, they asked you to donate towards their cause.

Wouldn't you feel a little insulted?

Bashing isn't the Answer

Clearly many of the people behind autism speaks lack perspective. It's not their fault. Sometimes it's hard to see things from the point of view of others.

It doesn't help either when autism advocates come off as agressive towards them.  Who wants to listen to the words of an agressive and abusive person. Nobody likes hearing criticism about themselves or their charities and yet I see this kind of behaviour constantly on facebook, in blogs and comments and in petitions.

This brings me to the topic of today's post.  Making peace with Autism Speaks.

A Real-world Example
Now the post that prompted me to write about this is a petition on Change.Org which is trying to tell Walmart not to sell "Autism Speaks" products.

It's backed up by two well written posts by autistic parents which explain why this is a bad idea. I particularly like the post which shows where autism speaks deploys its profits. Neither post is calling Walmart out on the notion of fundraising, they're both directed solely at the misguided mission and claims of Autism Speaks.

It all seems very legitimate - but there's one big problem here.

Outsiders Simply Don't Understand
Walmart has tried their hand at raising money for autism.

They think that they're doing a good and humanitarian thing but now they're going to get their hands burnt. They'll do what any company does when a lot of bad publicity heads their way.  They'll drop the offending product and put a big black mark next to autism fundraising and they'll move onto other charities which promote their image in a more positive way.

Walmart and their customers don't understand the problems that supporting Autism speaks raises and to be honest, this isn't their fight. They don't want (or need) to know.

Meanwhile, there are plenty of families with individuals who could really benefit from a little financial support.  There's still a need for charity.

Instead of giving Walmart a hard time over the issue, we should be congratulating them for supporting autism charities and encouraging them to open their arms a little wider and embrace other, more specific needs within the autism community. The sort of feedback they get from supporting families will be better than anything that autism speaks can give them and if we're generous with our praise when they provide support, they'll soon change their focus.

We need to make supporting families on the autism spectrum an easy and rewarding thing to do - and it's not something that we can do by continuing to fight amongst ourselves. We need to be showing a united front.

For that reason, I'm suggesting that we "make peace with Autism Speaks".  I don't think that we should ever give up trying to get our message across but there are better ways to communicate and sometimes gentle persuasion is far more effective than brute force.


krex said...

You are absolutely right . I recall this one time years ago when some women wanted to sit in the front of the bus and there was this whole big deal about it . I thought , hey lady, why don't you just relax and be glad your allowed on the bus....? (Sarcasm from an aspie...who would have thunk it possible ) .

Every dollar that goes to the organization makes their voice louder, makes more people consider them "legitimate" and threatens to shout down my own voice .

Do you really think that such an attitude would be considered OK when people were fighting for racial, sexual or gender equality . "hey you guys, it's OK that the white guys don't get it, I'm sure they mean well and getting paid half as better then no job at all ."

I wont make peace with ignorance or let NT's off the hook " cause it's hard from them to understand" the issue . It's hard for me to navigate the world they created and no one has let me off the hook .

Me said...

Very brave post :))

Juliane said...

I agree, one should not be striving to "cure" autism, as that is a pointless, and detrimental focus to have. To me it seems like humans are trying to get everybody to be the same, and any difference needs to be "cured."

But at the same time time I agree that we should not be attacking Walmart, or Autism Speaks for they are trying to help and they believe they are doing the right thing, even if it is a little misguided.

JamalJ said...

Black listing a whole section of products because of bad publicity is what almost all corporations (and the government) do. Unless you want to offend someone, removing it from the shelf is a better alternative.

Anonymous said...

My cousins daughter has Autism. (I, myself was reciently diagnosed with Aspergers). I will admit that I know very little about the org. Autism Speaks or their practices in detail. I do know that my family gave them donations to award my cousins Autistic little girl her own iPad and it has been very helpful in giving her a learning tool and something to use to distract her from sensory overload. After reading this post I'm still a bit confused as to what the issue is against Autism Speaks, I sure hope they won't use my family's well meaning donations for some kind of Autistic geniside!