Thursday, September 20, 2012

Moving the goalposts, again...

I'm not sure why, but I've hit a wall in autism world.

Maybe I need a holiday, maybe I've reached my limit, maybe autism world is hitting a wall and I'm just along for the ride... who knows?

Here's where I am, and here's why.

I spend a lot of time on the internet reading about autism. I read a lot of studies, I read a lot about the issues around the condition, I talk to people, I listen to people, and occasionally I can't take it any more and I assert an opinion different to someone else's.

Most of the time, I do not engage with the opinions of others, especially not on their blogs or facebook pages. This is because I do not see the point in trying to convince someone to think differently. What anyone else thinks is what they think. In autism, especially, this diversity is key. As much as it makes my gut churn, I value it all, whether I agree or not.

Two things make me struggle with my posting fingers off policy.

One is evidence wars - we know this to be true, therefore this (other evidence) is incorrect.
Evidence, schmevidence. The agenda behind and validity of any evidence are much more important considerations in my mind. Anyone who has done research 101 knows you can prove any hypothesis with the right strategy and the right language.

The other is when when someone else asserts something about me or my role in my autistic son's life that I find either offensive, or grossly counter productive.

It's this second one that has me changing my behaviour this week.

And it has made me decide to pull myself right back from this game. Me, personally, I mean.

I'll still write, and I'll still share information that I think is valid, but... the ugliness that grows from online discussion about autism is not something I want to take into my personal life any more.

I understand why intense discussion is necessary. I totally get how easy it is to be drawn into it. I completely accept the need to assert one's place in an argument. These are all things I see and do all the time.

The thing I do not get is the need for homogeneity, for consensus, and for trashing the views and stances of other people. Disagree, for sure. Agree to disagree, absolutely.  Accept that people think differently for good reasons of their own, makes sense.

Insist others are wrong, not so much. Force people to stand in factions, don't get it. Sling abuse, not for me.

The challenge for me in all of this is that here seems to be an understanding among people who talk about autism that there is a pool of information that everyone agrees on. Then, while swimming in this pool, we set about arguing about who is more right. 

But really... what is it that we all agree on?

What autism is...? There are a billion views on this one.
What to do about autism...? Runs the whole gamut from nothing to eugenics.
Whether autism is increasing...? There's a million ways to skew the numbers.

What we do have is both a community and a growing industry that have developed separate arms around any number of the perceptions about the above issues.

Each arm promotes its own perceptions, as it should. Some arms have grown into political movements. Some have grown into companies providing services and resources. Some are still at a grassroots level. Some are groups of like minds. Each one of these groups has a different reason for being and a necessarily different way of communicating their message.

And yet, so often, discussion about these groups, and between these groups takes no account of the functional differences between them.

So, parents hate political campaigns because they don't like a personality attached to them, then dismiss every single thing that campaign espouses.
Or doctors dismiss service providers because their version of valid evidence differs, then encourage parents to avoid said services.
Or supporters of philosophical standpoints deny the validity of other peoples' standpoints because they are different to theirs, and then spend hours arguing about apples and oranges.

It's nuts. And I guess it should be nuts, because nothing is really changing to make it not nuts.

But from now on, the nuts can happen around me and not include me.

I do not want to give up on making change in autism world.

More than ever, I think quantum active social and political change is required.

I think this because the very diversity that splits us into factions, is a big flashing sign that the condition has changed and continues to change rapidly and frighteningly. Therefore, what we have been doing cannot possibly be enough.

I think we need to stop pretending we know what we are taking about, set about defining it in a cohesive and inclusive way, and then get about doing something about it.

I don't think we should hamstring ourselves with nonsense about who is right, or worse, who is more right. I think we should accept that everyone is right and use that awareness to move the hell on.

I think if we don't, we will face a nasty (er) public health crisis in the future than we are facing now. I think if we don't, we are not doing our children or future children any favours at all, nor are we valuing the experiences of autistic adults.

I completely accept that this is my view. Many, many others think completely, completely differently. And some of them have much better political/social purchase than me.

If I was a politician and my fingers were fidgeting with the zip on my autism funding wallet, I would be bemused by the autism community. I would be asking myself what they want, and maybe wondering who they actually are. And then I would be giving my money to the ones who mount the most convincing argument. Or perhaps the only argument.

Right now, in this country at least, that's service providers with their attractive looking data and credible business models. They have autism handled, right?

Tick the box. Move on to the (insert other disorder) community.

Surely we can do better than that? Surely we can include more of our community than that. Surely there are more diverse issues to consider?

How do we make change? Buggered if I know.

I tried a song a couple of ways. I tried a book. I try on here.

As I am no closer to actually achieving anything close to social alteration, never mind social change, I'm opening my mind to any strategy - sky writing? inflatables? interpretative dance, perhaps?

But first, I'm buffering myself a bit. I'm stepping back and hiding behind the wall I hit. This game is rough, and I am not. No mater how much I want to be.

Also, I dance like a dog, so maybe the interpretative dance is out.


Bright Side of Life said...

A big fat YES to all of the above! Great post, Valerie!

Wendy Bourke said...

Valerie, I read your article in Women's Weekly today. I am a very lucky mother with 3 children, none of whom have disabilities. However, I have a girlfriend who also has 3 children - all have autism. The first one wasn't diagnosed until he was about 12, the second one at 4, and the third one almost immediately. I don't know how she copes, but she does. I just wanted to write on your blog to say thank you for sharing your story - it may help others with autistic children, but it also may make people with children without a disability feel less shitty about their own lives. (It did to me!)

Anonymous said...

You must read 'Nutreint Power' Heal your Biochemistry Heal your Brain by William J Walsh, it will answer so many of your questions and give you effective solutions. Also google GAPS Gut and Psychology Sydnrome - the woman who started this healed her son of autism via diet. You are on the right track with gluten free, and did you know diary is only two amino acids different to gluten and has a similar effect on the gut/brain where unprocessed protein crosses the blood brain barrier creating ataxia, literally poisoning and inflaming the brain which effects a number of things but particularly smooth muscle movement. You can also go to Learning Discoveries website and learn about neuro feedback and biochemical therapy. You will learn more in two hours than Billys neurologist was able to tell you in 9 years. Summer

rachaelfoley3 said...

I also read your article in the Weekly and while I am the parent of three children none are autistic (although all can be challenging at times). I am a kinder teacher working with children with special needs integrated into my kinder group. I have identical twins this year who amongst many other delightful attributes are also autistic. We adore them. They are affectionate, creative, loving and incredibly interesting. They are also exhausting, challenging, difficult, emotional and at times, overwhelming. In the past twelve months that I have been working with them we have been amazed at their progress. I believe my work with them to be incredibly rewarding. My concerns lie with the pressure and impact their disorder has on their wonderful family. Their fears for the boys future. It is in supporting those that have to cope our energies need to lie. Yes, a cure or an answer for prevention would be groundbreaking. But in the day to day survival for these children and their families, acceptance and support means so much more.