Saturday, October 6, 2012

You've been awesome company...

I published this on my own blog last week, and I'll re-post here now.

I have been honoured to be a member of Hopeful Parents for the last couple of years. I'll still be here reading everyone else's words, but I've decided to cease blogging myself.

Here's my final post.

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.

(nb. if these links don't work, they are live at here)

 - 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...

- - - - - - - - - - - - - - -

Valerie packed away her blogging fingers. 
She's playing a lot of Words with Friends at the moment, wondering what just happened.


  1. I have enjoyed reading. Wishing you peace on your journey.

  2. Valerie - I'm saddened to read this post. First, you are a great writer. Second, you are a great writer. Your voice has value. There is a wonderful poem by Mary Oliver, which I can't find our remember the name of now, that highlights how each of us have our own interpretation of the world and how serving that up to the world at large is value beyond anything that we can ever do. May I suggest that you pick up some poetry and read it often if you are going to leave us from reading your wonderful posts. Good luck and keep up the good fight!


  3. Valerie, I'm so sorry to see your voice disappear from this platform. I think you summed so perfectly so many of the issues we see that cause rifts and sadness among our community. Your paragraph summing up 3 years of blogging - especially the culmination of needing services and support for all of our children - is so relevant and poignant. That's what gets missed so often. We're all on the same side. Our kids need support and resources that do not exist yet. That unites us all.

    Best of luck to you on your journey. Your voice will be missed.