Tuesday, August 21, 2012

Article: Helping Your Special Needs Child to See Past their Own Point of View

My latest post on Special-ism is now available.

Helping Your Special Needs Child to See Past their Own Point of View

It covers the need to understand the concept of individuality and the way this and other factors can lead us to have different values and expectations. I look at the problems of "invisible" values and the difficulty in understanding how different people have different sensitivities.

Hop on over to have a read.

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.

Saturday, August 4, 2012

The Olympics and Genetics and Aspergers Syndrome

I had a fascinating conversation with a work colleague yesterday about why we keep breaking records in the Olympics. I said that surely we've reached the pinnacle of our human abilities and that any improvements have more to do with better timing mechanisms, technology and drugs. He disagreed and cited the case of Australian, Jessica Fox whose parents were both medalists at earlier Olympics.  Surely that combination of genes gave her a distinct advantage over her competitors.

He also talked about a hurdlist who due to some difference was able to bend her foot slightly differently to cut off a few centimetres with each jump. Sadly I can't remember who it was.  I joked with my colleague and suggested that maybe there's a gene for all of this and jokingly suggested that his parents might have worked in the same field as him, in this case finance.  Amusingly, he said that they had.

So how does this all tie back to Asperger's Syndrome?
We all carry genes which adapt our bodies for certain situtations and clearly those adaptations make us more suitable for certain types of work, while making us less suitable for others.  The athelete who has a different foot may find that her foot is great for hurdles but not suitable for football.  Nothing is entirely positive, it's simply "more  suitable for a given purpose".

Charles Darwin's theory of evolution gives the impression that these changes occur on a massive scale and affect life going forwards.  The edict, "survival of the fittest" suggests that the weaker species perishes.

This isn't necessarily the case.  What if evolution occurs on a much smaller and faster scale? What if our adaptations are not life-threatening but are career-defining?  What if they could happen over only a small number of generations?

Perhaps this is an important part of understanding the differences which come with Asperger's Syndrome.  It makes us particularly suited for specific types of careers such as Information Technology, Engineering and Writing while making us less suitable for others such as hospitality.

Perhaps we're all evolving independently towards the ideal specialization.