Tuesday, October 2, 2012

The screeching of brakes in the theme park...

I'm not sure where to start...

I think I'm done blogging about autism.

There we go. That's a start.

I'm not much of a systematic thinker, so I'll just make a list. It won't be a long list, I promise.

1. I'm over it.
(the most pathetic reason)

My feelings about writing here (and elsewhere online) have changed, pretty much overnight, though I've been chewing them over in my mind for a month or so.

I've spent three years sharing stories about Billy and our lives hoping it might guide one person towards any one of the a-ha moments I wished I'd had along the way. I'd like to think that did happen a few times. But right now, I'm either whining or repeating myself.

Even I am bored with the sound of my own voice.

I have no access to policy change. I am not mates with any politicians. I have no inroads to make medical change.

I have come to believe I am dancing in a long tunnel, and as enjoyable as that has been, I'm not Alvin Ailey.

2. It's too hard all of a sudden.
(the most upsetting reason)

The viciousness and vitriol in autism world, right now, is too much for me.

Plain and simple.

It either didn't bother me before, or it didn't happen before. I'm not sure.

It bothers me now.

It bothers me that some people tell me there's no way I can love my child.
It bothers me that others assume I don't value my child.
It bothers me that people give me unsolicited advice that assumes I have not thought about whatever they are talking about.
It bothers me that people confect stories that draw attention to themselves with no acknowledgement of the responsibility inherent in sharing those stories.
It bothers me that when disagreement occurs, I would rather argue the point, not the man, but that is rarely what happens.
It bothers me that the level of discourse is often reduced to 'you believe (insert anything)', so 'you cannot possibly understand (insert anything else)'.
It bothers me that people tell other people what to think or say or do, as though we all agree on what is right.
It bothers me that anyone with an opinion is fair game for people with an opposite opinion.
It bothers me that people want to bring other people down by somehow proving their reality to be untrue.
It bothers me that truth, in this game, is elusive and compromised and that concept goes unacknowledged in a lot of what masquerades as 'discussion'.
It bothers me that any of this bothers me at all.

I could be doing so much more than being bothered by things and people I have no control over. Over which I have no control.

The whole preposition thing bothers me too.

3. Autism is getting worse, not better.
(the most depressing)

It's having more of an impact, not less of an impact in our lives, and in the lives of most people (if I'm genuinely honest). It has not gone away in any sense. For us, it has become more serious as time has gone on. We are facing a future that no-one prepared us for, no-one even mentioned as a possibility.

It is our life, and so it is wonderful. But it is also deeply confronting and serious and unpleasant.

Being told this is trivial, or irrelevant (as happens with phrases like 'you should just calm down and enjoy him', or 'we're all a little quirky', or 'you can't love your child if you hate autism') is seriously the hardest thing I've ever had to hear.

I need some distance from that. Not distance from my life, or my child - distance from the proclamations of people who are speaking about themselves, and not me or my child, but are not aware there's a difference.

I've always tried to use Billy's life as a springboard for thought, here. It's not universal fact. It informs the way I think, but it has never limited the way I think. It's clear to us that Billy is atypical in many ways (and I say that with no value judgement attached), so making him some kind of poster boy for autism would never have made sense. Making any one a poster child for autism would never never make any sense.

In addition, in this country, at least, I am overwhelmed with the lack of insight and the lack of real, meaningful, compassionate action in regard to autism.

I see lots of people fighting for their moment in the spotlight, some with more altruistic motives than others. I see lots of people spruiking services that are of limited use and are increasingly both gut wrenchingly expensive and backed by questionable, yet 'endorsed', evidence. I see the medical fraternity distancing themselves from the medical nature of autism, only accepting it when the crisis has already occurred. I see more and more kids being left behind in the education system because their needs are too unique for the mainstream and not eligible (or appropriate) for the special needs sector.

It's dragging me down.

It's not a game, it's a reality for us, and for so many people we care for. It is becoming more confronting, medically and logistically, to live it. Our kids are getting older, oddly, and words like 'quirky' and 'different' and the need to tell people to celebrate those things have sunk further and further away from our daily hierarchy. 

Those sentiments have become Hallmark cards, and there are plenty of people selling them.

I can't say any of those things in a new way, and even if I could, I wouldn't. But that's because we, as a family, have been catapulted well past them. If Billy was already an independent adult seeking acceptance and understanding, I'm sure I'd be right there wearing the t-shirt.

I'm happy others have that message in hand, because as things stand, it is the smallest of our concerns.

4. It's not the same as it used to be.
 (the last one)

By 'it' I mean the blog, the online experience of autism, the reason I found myself rabbiting on in the first place.

Online boards used to be crucial to me. They were, literally, the saviour in the middle of many frightening, confronting, dark nights. They were my lifeline, and the source of so much new and useful information. The women and the children from those boards remain incredibly important to me, but the information is no longer the primary reason for my logging on.

Facebook has a different menace. I still learn a huge amount, and treasure the generosity and passion of people, but it's not like it used to be. The cameraderie is gone, in many ways.

And here's why I think this has happened, in my life at least.

We were all, in many ways, a part of a new social (media) movement.  Trying to explain the concept behind The Autism Experience to my mother, was like her explaining the metric system to her own mother.

'You are writing a book with people you have never met, about children you don't know and a condition no-one really understands... ooooooh kaaaaay, dear...'

We were all full of energy and enthusiasm, and our children were mostly at a similar age (seriously, what happened in the world to hit kids born from 2000 or so onwards quite so hard?). We had a lot to talk about, a lot to learn and a lot to hope for.

Flash forward five years or so, and it's a very different story.

The kids have grown to inhabit very different places on the spectrum, even very different places on the health spectrum. We all drank the same (or similar) kool aid, and the results are remarkable in their lack of similarity.

Maybe, it's harder and harder to 'help' each other, when our children are seemingly living with different conditions. I'm thinking they were probably quite different when they were tiny too, but we weren't being encouraged to see them that way. Handling a two year old's speech delay, is handling a two year old's speech delay, until the speech comes or doesn't and you deal with what you've got, if you know what I mean.

Right now, though, in The Autism Experience cohort alone, we have every kind of autism story you could hope for, and there are so many conflicting emotions tied up in 'sharing' the way we used to. And that's before we get to the philosophical, medical, political, cultural differences between us.

I want to be a part of autism world because I care about the people that I have met along the way. I care about the fact that our numbers are growing and no-one in a position of responsibility seems to be demonstrating much care.

But most of all, I care about my family.

Every single fibre of my being right now is saying, 'do not turn your back on this'.

And yet, 'this' has become something I don't understand anymore. I don't know what autism is, I just know it's not a roll of the dice. If it was, a lot of us would be scared off board games for life.

There is not point in blogging about something I do not understand. That would make me one of the people that bother me. It makes me complicit in the very behaviour that bothers me. It makes me a part of the spin machine that is diluting a critical message.

Here is what I tried to impart in three years of blogging. In one paragraph.

Autism is a giant issue and it's getting bigger. Whether it's the quirky and misunderstood end, or the severely physically and intellectually disabled end, or anywhere in between... for now, it's all the same condition. It might be preventable. All of us sitting on our hands, defending our own patch is one thing, but the change required to get a handle on the condition is huge. Whether we think it's something to welcome, something to curse or something to tolerate - autism needs serious amounts of resources that do not exist currently. The work that is required to establish these resources is immense, too immense for me to conceptualise, but there is no denying it.

I've loved being in contact with you all, but the fish in our frying pan are threatening to jump.

Lest I start bleating, or blubbering, let me say goodbye (and thanks for all your fish).

Here's my unsolicited advice, in case you are new to the game, or a glutton for punishment.

 - If you don't already, read Age of Autism, read A Diary of a Mom, read The Thinking Mom's Revolution,  read John Elder Robison, follow Autism One, keep up with Generation Rescue, listen to Tony Attwood, keep up with Dr Jerry Kartzinel and Dr Martha Herbert, go back and read Natasha Campbell-McBride and Jacqueline McCandless.

 - It is not required that you agree 100% with anyone or do what they say, but it is required that you respect them and everyone else you meet along the road.

 - Be nice. It's like organic food. It helps, even if there's limited proof.

 - Get over yourself and your own story. Yours is not the only story, and everything can be gained from acknowledging that you are sharing this road with a diversity of people with a diversity of needs.

 - Listen to your gut. No-one knows everything, but you know a lot about the things that matters the most. The rest, you can Google.

 - Put the autistic person you know first, yourself and your family up there beside them, and all the other stuff somewhere behind.

 - Don't let the turkeys get you down. It'll make you do stupid things like this.

I've got a few plans and a few ideas, and they may end up somewhere in cyber space or air space or real space, but... the rollercoaster has ground to a halt.

If only that was true of our actual lives...


Zoe said...

Wow Valerie. I totally get where you are coming from. I've found myself sharing some of the same thoughts after spending 8 years in what is often a very divisive autism community. I share your frustrations with service providers, local authorities (or your equivalent), and national government. Some of the biggest culprits in terms of intransigence are the very charitable organisations who purport to represent us......I've tried to work with them from the inside but have found there is no place for me as my ideas just dont fit with the mainstream thinking about autism or the 'branding' of the organisation. More and more I'm finding that this 'branding' is to embrace neurodiversity - which is great - but not when its to the detriment of other (often more marginalised and less vocal) parts of the autism community. Over the past couple of years I've been steadily retreating into my own little space (the school we set up) where I know we can make a big difference to the children who attend. And if no-one else wants to hear about how we are doing this and how this approach could benefit other families...so be it. I know I am doing the best I can with what I know and I guess sometimes that just has to be enough. Sometimes its time to shut out the rest in order to remain sane. You are not alone.
Thanks for all your wonderful words, thanks for sharing your experiences. I look forward to whatever comes next for you - whatever it is, I'm sure you will be brilliant at it. xx

Beth said...


I do not have an autistic child so I could never fully know your experiences, hence why I never commented in the past. However, I can honestly say I have learned so much from you on how to just be an open, listening, learning, loving, respectful, honest individual. I do pray for you, billy and your husband and I know this is not the end of your story. I look forward to being affected by your words and your life journey again someday.

Carmel said...

Hi Valerie,

I have learned an awful lot from your posts and will miss them. Thank you for the time and energy you have devoted to creating thoughtful and honest posts. Good luck in your future endeavors and best of luck to Billy and your family.

Anonymous said...

I'm sorry to see you go. Thank you for sharing your thoughts and life experiences with candour, wit, and intelligent insight. I'm Just a stranger on the other side of the world, but I feel like I've walked alongside you on your journey for a few years, and wish you and your son all the best.
- Nancy Hutchings

Linda Park said...

Sorry, another depressing issue affecting our children:
Perhaps you are already aware of this issue? You may disbelieve it, like so many others.
Visit www.magdahavas.com and click on the schools link.
Also this link to see the international series of events:
I became aware of this issue some years ago, but it all just seemed 'too hard'. Then I started studying again at university and had a choice of topic for an essay. I decided to choose 'wifi in schools' as an essay topic, thinking that finally this was an opportunity to see once & for all if there was any substance to the idea that wifi/electromagnetic radiation (below heating/thermal levels) could have an effect on health. I started out as a skeptic really. After 3 weeks of heavy reading and putting everything I read into a database, comparing and contrasting information, I started to see a pattern........and to recognise government 'spin'....and I was shocked. I realised how much we all so easily believe what we see in the mainstream media, on TV, how we follow what everyone else is doing......
Anyway, I pay private school fees to send my son to a school with no wifi.
But there is no high school (anywhere in Australia, I think) that does not have wifi. I suppose home schooling would be the only answer for those who can afford it.
Did you know that in every single classroom in every school I work in (other than my son's), there is a wifi mast, on the wall or on the ceiling....and there is no switch to turn it off, even though the children do not even use mobile devices the whole time? This means the wifi mast radiates all day, every day, all year, year after year......
And iPads.....they are encouraging autistic children to use iPads - touchscreens. Has anyone bothered to measure the levels these students are exposed to? Well yes, if you look to the right experts. And the levels are high.

Anyway, there is so much to this topic. You probably disbelieve me. And even if you do believe me, you won't find any support from the schools or the department of Ed or the government, or public libraries, or hospitals, or...well, wifi is everywhere, including your own or neighbours' house.....
This topic also includes dirty electricity, mobile phone masts, mobile phones & laptops....iPods (they have wifi), Wii game consoles.
I am not against technology, I am pro technology, but I do believe in protecting children's health as much as we can. I do believe in measuring levels of EMR and in seeing what other countries are doing and in making decisions for our own children and families. Magda Havas has this link, a very helpful document written by teachers: http://www.magdahavas.com/ontario-english-catholic-teachers-association-wi-fi-in-the-workplace/

One party in Australia did try to do something about mobile tower placement (& only more recently Andrew Wilkie and following him the Greens - although the Greens are all for wifi on public transport etc...a huge disappointment in my view): http://www.emfacts.com/2007/12/825-australian-democrats-warning-on-mobile-phone-towers/
Read 'Join the Dots' at the bottom of this post - you won't believe it, but it is based on real science - Dr Neil Cherry, a New Zealand physicist is cited - he is dead now but he talked about this issue years ago.
The site emfacts.com is authored by Don Maisch of Tasmania. If you have time, read his PhD online. He writes about how the standard was set by our government - what we & our children are permitted to be exposed to. It is a scandal.
As usual profit is the top priority - Big Business in hand with Government, with profit number one. Not about looking after people at all.
Best wishes