Sunday, August 5, 2012

The long and bumpy road...

Autism world is rarely a calm and serene place.
In our case, that tumult very rarely has anything to do with Billy. It has everything to do with what swirls around him – medical issues, education issues, theories, beliefs about the condition and the curious tendency the autism ‘community’ has of dividing and conquering.
This is never clearer than on the internet – in blogs, on the comments sections of news sites and especially on Facebook.
To be honest, it feels like some kind of line needs to be drawn in some kind of sand.
It feels like we, as parents, need to get a few things sorted, so we can stop diverting from the really important things.
Those really important things, in my book, would be related to understanding what the hell autism is in a thorough fashion, understanding why so many kids are being diagnosed with it, and doing something about slowing that diagnosis rate down.
The diversionary tactics?
These will take a little more detail.
There is nothing I find more damaging than the factionalism that has grown in the autism community. Nothing. Not even the amount of time and money we spend beating our heads against the chests of doctors.
What am I talking about?
The ‘well, my kid’s not sick, so the people who think their kids are, are either wrong, crazy or just different to me’…
The ‘I need to tell people how to think (and I mean tell, not share information that might offer an alternate perspective) because they are deluded and ill-informed’…
The ‘I don’t like (insert public figure) therefore I reject anything associated with them’…
The ‘people who believe (insert intervention or standpoint) are all (down to the last one because I know them all) crazy, so that intervention or standpoint is wrong’…
The ‘I love my square peg and anyone who wants to cure autism is engaged in eugenics designed to de-quirkify the world’…
I could go on and on…
It’s challenging enough to untangle this kind of stuff in interpersonal communication, but on the internet, it has a much wider and more menacing effect.
Instead of listening and actually hearing other people’s perspectives, we use those perspectives to do the opposite. A difference of opinion is interpreted as a personal attack, and discussion gets waylaid in painfully pathetic arguments about a ‘lack of support’.
To me, diversity of opinion is instructive, inspiring, stimulating, confronting, challenging… all those lovely valuable education-y type words. Sometimes, it hits me in the guts, but that’s because I care about the issue, not because it’s an attack on me.
Is it a reason to shut down thought? No. Is it a reason to condemn others? No. Is it automatically a reason for me to think anyone (including myself) is wrong in their personal choices? No. Is it an invitation for me to instantly engage in rampant justification of my own standpoint? No.
Diversity of thought about autism, is just that, thought. It’s all contributing to the giant pool of consciousness about a condition that is NOT understood deeply. Doctors agree, researchers agree, academics agree – autism is very poorly understood. As Billy’s paediatrician said to us last week, ‘I really hope the science catches up before I retire, because not knowing what’s going on doesn’t get any easier.’
Our perspectives as parents, should we choose to share them, are just that perspectives, NOT edicts, or threats or instructions to others about the validity of the choices they have made. And yet, so often, they are interpreted as such.
We are all something and we are all nothing in this game.
Even if we have actually devoted our professional lives to the active practice of research and understanding of the condition. But if that’s you then, I’ve got a fair idea, you have lost the time (and the inclination) to be offended by people’s reactions to the story about how you learned to face the accusing stares in the supermarket.
There are bigger fish to fry here, people. Surely.
Facebook, blogs and the internet in general have been great for information dissemination within the autism community, and conversely, they made for a giant theatre of self righteous, playground gang style huffing and puffing that distracts from the actual reason why information needs to be shared in the first place.
As parents, we have a great opportunity to stand together, and yet, we so often choose to stand apart.
We bicker about whether one therapy or another is the one. We fight about how one personality is more right than the other. We build walls around our own chosen camp to shut out the others. We seem to need to believe that in order to be right, other people have to be wrong.  
It is a short sighted stance that may make us feel less attacked, or less guilty, in the moment, but that does NOTHING for the community as a whole.
Why is this even important?
Because, beyond our own personal lives and our own personal choices, there is a world out there. This world generally does not give two craps about autism, because they have their own stuff to deal with. It is important, however, that they do give a crap, because money and airspace are required to achieve one very crucial thing.
An understanding of autism.
We can extrapolate all we want from the word ‘understand’ (manage, treat, cure, slow down, respect, eradicate… whatever) but right now, we do not understand enough. It is getting worse, not better. It is getting harder, not easier. It is different now, than it was twenty years ago, and we have no reason to believe this trend will stop.
We need the resources of the ‘real world’ (academics, researchers, doctors, thinkers, bankers, politicians) to help in the understanding process. But we are very unlikely to get that help when we aren’t even willing to pretend we are united.
One would think the condition itself would unite us, but clearly it doesn’t.
If we want to distract ourselves with arguments about more or less autistic, more or less sick, more or less safe in the face of vaccines, we are giving the world permission to give us some space until we sort our shit out. They will take that permission and focus on some other very worthy condition, as they should.
The more we cut each other down within autism world, the more we are eroding the foundations of our children’s future, in my mind.
Right now, it feels (on the internet, at least, and increasingly in the ever hungry 24 hour news cycle, as well) we are behaving worse than children fighting over who has been on the swing too long. We are not modelling behaviour well, to our children, or to anyone else. And I completely count myself among the misbehavers. There are reasons for that misbehaviour, but those reasons are not excuses.
I reckon we need to take a step back.
This is about people. About children. About our children.
This is about increasing numbers of children struggling with everyday life in a way no-one wants to struggle.
This might be avoidable. This might be preventable. This might be more manageable than it is right now.
But instead of focussing on the mights, we are hyper-focussing on the who-is-rights.
There is personal thought, and there is collective action. In my opinion, we have confused the merits and functions of the two, in autism world.
So… where to from here?
I can’t tell anyone else what to do, and have absolutely no desire to. But I can control my own behaviour.
I’m taking a step back in my viewpoint.
Billy is my personal life, and I live my life with him in the best way possible, aiming for the best possible outcome, focusing on the most positive methods and actions.
My desire to make change in how autism is understood, is obviously informed by my personal journey, but that cannot be the only source. Otherwise the whole world would be elbow deep in Thomas trains and have Youtube hard wired into their brains.
My own child may well be one of the ‘sick’ kids, but he has the same condition as the other autistic kids, in the eyes of the world. Whether we like it or not, it’s all autism. We are on the same road.
Do I think our service providers are under-performing and limited in their views? Yes. Do I think our government is under-informed? Yes. Do I want things to change? Absolutely.
If I get have airspace beyond my blog (which will always be informed by our personal experience) then I clearly need to think about everyone and everything that autism entails. I need to de-personalise, in a productive way.
It can’t devalue my journey, to join others on theirs. I need to nod, respectfully, and accept that no-one would choose this just to have a place to vent their views. They live it. We live it.
It’s a long and bumpy road (altered specifically to avoid the wrath of whoever owns Beatles lyrics these days), that may well lead to your door, autism community, but it goes much, much further as well.
It’s the condition that brings us together. It helps no-one if it drives us apart.
Well, in all honesty, it helps for a teeny, tiny self-contained moment, when I fist pump my virtual argument triumph… and then it’s gone. Along with the smile from the Willy Wonka meme, and the good feeling I get from a surprising thread on reddit.
That’s not enough to sustain any kind of meaningful momentum.
Not for me, at least.

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Valerie's increasingly random ravings can be found at Jump on the Rollercoaster

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