Tuesday, January 1, 2013

Spreading the love around...

I've migrated to Wordpress for a while, with a whole new blog.

It's information and action focussed. It's always updating. It's just growing, so be kind to it. Treat it like a kitten, just for a while.


PS. Read the 'About' section first to see of you want to stick around.

Sunday, December 16, 2012

Stand by...

The forces are rallying.

In 2013 (Mayan Apolcalypse, not withstanding), I'll be back. Re-branded, re-polished, re-energised and re-focussed.

Fewer charming anecdotes about living with autism, more information and social action.

Though I may throw in the odd poo story, because I know how much you love them.

Sigh. OK. So do I.

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...

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.

Sunday, September 16, 2012

Why we need to talk...

Billy will be nine in a little over a month. He is a long, tall boy now, though he's still all cheeks, ears and eyes to look at.

He is, now, as he was the moment we realised we'd made him, the most excellent child I could dream of. Of which I could dream (who invented that rule, seriously?)

As each birthday has approached in Billy's life,  I have collected the previous year in artefacts - videos, photos, collections of zoo maps. This year, I'm going to do it here. Now.

It's a little premature, but I'm imagining it is going to open a few cans of worms, for me. I'll need to work on catching and containing my squiggling reflections in the intervening 50 or do days.

This time last year, we were in the final stages of preparation for two gigantic events. Three, if you count Billy's birthday.

The first was a mediation session in the Australian Human Rights Commission, aiming to secure an apology from Billy's school for their unlawful actions towards him and us. The second was our first overseas holiday as a family.

I was 10 kilograms heavier, 10 years older and 10 kinds of crazy.

We secured the apology. We got on the plane, and we started a new countdown.

Consider this the 2012 Jump on the Rollercoaster clip show.

10. Billy takes to international travel like a pro.
With his toy wombat under his arm, and an Apple product tucked dangerously close to every vital organ, he flew - literally and figuratively. No-one was more shocked than me at how well he handled the rigors of long haul flight, long haul driving, changes in food, new friends in every city, new everything every day.

We kept a diary, we bought a lot of maps, we walked a lot. We listened to him and gave him space when he needed it. He listened to us, and felt safe and happy. There was one jet lagged vomit, a teeny tiny San Francisco runny nose and a scary moment at Disneyland at night when he decided Captain Hook was coming for him.

Beyond that, he had the time of his life.

9. Billy does Christmas.
Billy is the youngest grandchild for one grandmother, and the only grandchild for the other. He has a broad variety of excellent stand in grandfathers (step grandfathers, grand uncles, mentor type folk), but a devastating lack of blood-line grandfathers. I am digressing, to divert from the gigantic bandit-like making out that occurs every December in Billy's life. He is treasured, and that results in treasure. Seriously.

Also, being Billy, Christmas (read: peak tourist season in Australia) doesn't divert him from his favourite zoos in the north of the country where the abovementioned grandpersons live. Think over 35 degrees Celcius (north of 100F), grumpy children, bored teenagers, overly enthusiastic parents and... us. It's awesome, in opposite world.

This year, we went to Dreamworld - name unintentionally ironic. We went there because they have tigers and an 'animal park'. I use inverted commas, because many of the actual animals had been replaced by stuffed animals (in cages, I kid you not) and the tigers were asleep which made them invisible behind the wall of bored teenagers, who were also sunburned and queasy from rollercoasters. Dream, it was not, unless it's the kind of dream you have after too much MSG.

Billy loved it, and wants to go back.

8. Billy has a 'mental breakdown'.
One day in January, Billy took to his bed.

There were various precedents (neighbours and local council getting busy with industrial amounts of Roundup, a particularly difficult set of blood tests where I may have had an accidental intimate encounter with a phlebotomist while briefly restraining Billy, a planned trip to the movies - I know it's supposed to be fun, but for us, as for most autism families, it's never the deeply relaxing prospect it should be).

Anyhow, a sweaty and floppy Billy lay in his bed and refused to leave for a couple of days. He repeated a lot (and not in that comforting echolalic way we are used to). He stared a lot, twitched a lot and made some very very unusual repetitive movements with his upper extremities. We took him to the doctor, who viewed video of the repeating, staring, twitching, repetitive moving and pronounced it a... 'mental breakdown' (no, I hadn't heard that phrase used since I saw 'Valley of the Dolls' through a crack in the living room door as a child, either). She suggested a trip to the psychologist (see Billy gets comfortable with things he's already comfortable with) and gave me strange looks as she wrote the referral to a neurologist I demanded from her.

One day later, at 5:45am, Billy had his first generalised seizure.

7. Billy has epilepsy.
It took three EEGs, two neuro appointments, one MRI and a partridge in a pear tree to get this diagnosis. For new players (and we are very very new) can I give you a heads up about looking into the mysteries of heads?

If the word seizure is suggested in relation to your child, you will be offered an EEG. They will first try to sell you on a short EEG. Unless your child has massively apparent seizure activity, or you regularly win lotto, you will not see a seizure on a short EEG. This will mean a line will be drawn under the question of seizures, until your child has another seizure. If you are genuinely concerned about seizures, and not simply looking to draw random lines under health fears, ask if there's any chance of a longer EEG. There may not be, but it's worth a shot.

There's also the questions surrounding the links between autism and epilepsy and seizures and sub clinical discharges and... Actually, I'm going to let you google those yourself if you are keen. You'll probably make more sense of it all than I've managed to so far.

Billy is handling this new addition to his file with style, grace and the odd bit of scary language ('my eyebrows won't stop buzzing' is one of my favourites).
6. Billy gets mega healthy
The seizures gave us a bit of a kick in the pants.

We though we were doing OK, health wise, but really we weren't. Billy was CF but not GF. He was eating a grand total of maybe 10 things. They weren't bad things necessarily (OK, the chicken nuggets weren't made of hemp seed, but they were the only animal protein he would eat) but they weren't great either.

So, we started juicing. We added plant based omega threes (fish oil made Billy leap through the air like a salmon). We added probiotics, then prebiotics, then more and more good clean organic foods as his gut healed. We added a multi-vitamin formulated for kids on the spectrum. Finally, we nixed the gluten.

Each and every step along this path was taken so slowly Billy barely knew it was happening. We took baby steps. Actually we took baby beetle steps. Teeny, tiny steps. We're still walking this way, and will for the rest of his life. The change is miraculous (no drugs in his GI life, really noticable changes cognition wise) and it needed to be because the seizure activity has further complicated Billy's ability to focus.

5. Billy gets comfortable with things he's already comfortable with
OK, that's a little harsh.

Billy did CBT - cognitive behavioural therapy. He did it one to one with a very lovely, positive, clever young psychologist. It taught him what anxiety is, what it feels like and what to do about it. It's useful, it is. On a surface level that may well allow him to distract himself from the possibility of running onto traffic to escape a painful sound. It reminded me that behavioural therapy is not my favourite thing, and that life is really all about managing risk rather than eliminating it.

Billy has a toolkit, and a bunch of new reasons to suspect his beloved dog is actually his enemy.

4. Billy avoids schoolwork.
He is an almost nine year old boy, after all.

Distance Education continues to be his preferred mode of learning, and so it is ours. He needs an adapted program, and he was not receiving that in the 'system'. He is quiet and compliant. He is not a behavioural disruption. He talks. Ergo, he can cope.

But he can't. He doesn't. He doesn't even survive. He is depleted and exhausted and saddened. He is very clear about the stress he felt at school and pre-school. In addition, we now know from our adventures in neurology, that those stresses have a direct impact on his health. So, it's a no brainer.

Billy needs calm and time and space, so that's what he gets.

3. Billy gets an adjusted prognosis.
It's been a year of new thoughts about Billy's future.

Up until the last couple of weeks, we had kind of assumed that Billy would make his way through the education system (in his very own unique way) and probably find a way to study post school (again with modifications). We thought he might live independently (quirkily, but independently) and we thought he would probably hopefully have an independent but quirky relationship... all the stuff that I read was possible for 'high functioning' autistic people. We bought the PR. We invested in the t-shirts.

It's unlikely to pan out like that according to his neurologist.We always had concerns beyond what we were told. We tried to get answers for those concerns. We tried to make sure his life accommodated those concerns. We had people tell us we were wrong. Oddly, not medical people.

Anyhow, they were wrong. We were right. It doesn't feel good to be right this way.

2. Billy continues to be awesome.
This new information doesn't change much in reality.

Billy is brilliant. He is insanely funny. He is inordinately happy. He is incredibly clever. He can do stuff that I can't dream of doing. He has amazing ideas, and he has enough follow through to make them happen. He has an immensely good sense of himself, he is very clear about his own limits and he is fearless in challenging them.

He is beyond the child we dreamed of... he exceeds the child of which we dreamed.

We continue to do what we have done since the first moment we knew he existed. We love him like we have never loved before. We listen to him. We put him first.

We do every possible thing we can to ensure he is well and happy and Billy.

We don't belittle him. We don't infantalise him. We don't think he is 'less than'. We don't misrepresent him. We don't pity him. We don't find him a burden.

I speak about his challenges in the hope it might help other people facing similar issues. While some may see this as a self aggrandising grab at notoriety, I see it as an opportunity to give other people a heads up. It most definitely breaches his privacy, and as his parent, that is my choice. As much as he can understand, as an almost nine year old, he does. When he is 18, he and I can slug it out about the fact that strangers know how his bowel works.

Here's why autism parents need to talk.

Autism world is full of information. Some of it is relevant. Some of it is crap. Some of it is pure spin. Some of it is genuine gold plated messages from the gods.

There is no way of knowing what is relevant to you and your child. No way. The doctors can't tell you with any authority. The teachers sure as hell can't hand you a crystal ball. You get the diagnosis, and then you start... doing. Blindly half the time, but driven by the hope you are doing the right thing. Hoping blindly that you are driving in a useful direction.

As a parent, there is nothing worse than not knowing what to do to help your child. It's not because your child is a hopeless case. It's not because your child is worth nothing. It's because they are your child.

You want to help your child because they are everything, because they are the moon and the ocean and the dinosaurs and the phosphoresents and the first star of every single night. You want to help because every single fibre of your being is buzzing with the message that you should. You want to help because you knew from the moment your child existed that you would, no matter what stood in between you and them.

Like it or not, there are days when autism feels like a giant brick wall between you and your child. Other days it feels like you and your child are behind the wall, and the rest of the world can't see through. Like it or not, autism is the thing you didn't expect. It's the new information. It requires... orientation. Acceptance is a given. Awareness is what we live.

Let parents be parents. Let us play our part. No matter how it looks from your point of view, whoever you are. Other parent, autistic adult, teacher, doctor, neighbour, crabby old lady at the shops... have your opinions, but share them sensitively. Share them with the knowledge that our children, who are autistic, are our children. Not our possessions, not our projects, not our experiments.

Our kids. That we dreamed of. Of which we dreamed. Ugh... isn't there a song about this?

As a parent, you want your child to have access to the world - whatever that world means to them, however they see the world, whatever they want to do in the world...

So, we get to the end of this year's countdown.

1. Billy plans a new holiday for 2013.
The first one worked so well, he's ready for another shot at the world. On his terms.

Monday, September 10, 2012

What's your problem...

Gosh, autism world is a grumbly place.

Everybody's got a gripe of some kind. Perfectly legit ones too. It makes me slightly uneasy that if I ran out of actual challenges, there are so many more disgruntlements to cherry pick from around the community that I have good reason to never laugh again.

Doctors suck. School sucks. Vaccines suck. People who talk strongly about anything suck. People who have opinions different to other people suck. Parents suck. Parenting sucks. Food totally sucks. The diagnostic process sucks humongously. Research sucks. Genetics seriously suck (though this one really truly confuses me). Medication sucks. Therapy sucks. Everything sucks.

Seriously, I'd be hard pressed to find anyone (including myself) who lives in autism world, who doesn't believe that quite a few of the things I've just listed suck. The others have their own lists.

Here's the thing, though.

Things do suck, at times. At different times for each of us. Sometimes permanently, but mostly it's transient. Some of us cope better than others. Some of us barely notice. Some of us are moved to roll up our sleeves and devote a fair proportion of the lesser sucking portions of our lives to making change (in the hopeful thought that perhaps it might not suck as much for people in the near and far future).

And yet, autism world being the rich and complex place it is, admitting things suck is somehow not permitted.

As soon as one person says something doesn't make them happy, someone else comes out with a statement about how that offends them to their core. If you express frustration as an autism parent, then you are offending autistic people. If you express frustration with your child's medical situation, you are offending people who don't believe their child is sick. If you express frustration about your own vaccine choices, you are offending people who believe their choices were the absolutely correct ones.

I guess feeling offended is a perfectly legit frame of mind, but... is expressing it helping anyone?

Are there some things, we talkative autism folk should think about keeping to ourselves? Does it gain anything at all to justify your position as a counterpoint to someone else's?

It's not like we're blogging or commenting just for our own mental health. If we were, we'd keep a private journal and leave it at that, right? We must all have really good reasons for opening our mouths, surely?

Sometimes, when I have nothing else to do, I search around the internet to see if I can find the equivalent of the intense factionalism of autism world in the online expression of other medical conditions. I see bits of arguments around hearing impairment, especially in relation to cochlear implants and sign vs speak. I see broad discussions about advocacy and normalisation. I see lots and lots of detailed, validated information and campaigns seeking cures in conditions that strike children.

But in autism world, among rare gems of articulate, passionate (often very dogma-specific) wisdom, I see a lot of indignant 'you offend me' responses to blogs and articles. I see a lot of attention seeking , stating the bleeding obvious behaviour. I see an almost frantic need to be right (and to call out those who are 'clearly' wrong) in a realm where right is very difficult to define.

And I do not get it.

What's the saying? 'If you've met one person on the spectrum, you've met one person on the spectrum?

So, crude extrapolation makes me think something like... if we accept that all autistic folk are allowed to be different, we all must have very different stories as autism families. If we all have very different stories, then we must all have different experiences.

So, if you are angry because you feel like you were promised vaccines were safe and they weren't for your kid, then... that seems, to me, like a fairly valid reason to speak out. Especially if you have rolled up your sleeves and committed a bunch of your non-suckful time to making the change you believe is necessary. Coming from that perspective, to me at least, desiring change seems like a fairly valid standpoint. No matter how that is expressed, and no matter how it might differ from what I have lived.

If you are elbow deep in faeces paintings and you're not thrilled about that fact... I hear you. I can't imagine cleaning poop repeatedly off surfaces not intended for such things is fun. I'd want change too.

If your child was unfairly restrained/illegally assaulted/illegally discriminated against (like there's legal discrimination...) then, go for it. Shine a light in a dark corner. I can learn a lot from hearing about it.

If you are going through the motions of life and need a moment in the spotlight, do that too. It's tough to do that without making a hero out of yourself, in my experience. And that feels wrong to me. But, each to their own.

A little side note here. Genetics. I do not get why people are so dead against trying to understand  genetic information around autism. I don't want it to be the only thing, but... I do want to know some things. I can't help thinking if I'd known Billy was as vulnerable as he is, pre-birth, I would have made some very very different decisions about what I put him through in the name of public health and modern living.

I hear people spouting arguments about a hidden eugenics agenda and I think surely that's not a serious concern. (FWIW, I think this is trivial because believe what people choose to do with pre-natal information is their choice).

I hear people talking about wasting resources and I think, sure, I would like the resources spread throughout a range of research areas, but as I am not gaining profit from the outcome of said research, I'm guessing my wishes about research diversity are not high on the priority list... unless I start my own multi-national drug company which is unlikely given my chosen profession of Children's Television).

I think I must be missing something on the anti-genetics research front, but... that's nothing new. I'll add it to the list of things I need to get a better handle on.

Back to the autism community, minus my genetics confusion.

Here's my take on things.

Autism is relatively young, as the condition we see currently.

Autism is a frighteningly diverse condition. Some people take its emergence in their stride, others do not. This may have something to do with the differing effects it has on the bodies, minds and lives of the people who live with it. Or with the experience or psyche of the parents. Or with the phase of the moon, size of the trees outside or something...

Autism requires a massively different set of parenting skills depending on the aforementioned diversity, and perhaps the psyche/s of the parents.

Autism is something some people accept, some people turn into a personal cross to bear, and some people interpret as a call to action.

Autism has given some people a reason to raise their voice - in person, on screen or in print.

Autism has grown, for some, into a political movement that harnesses the full force of their raised voices to effect the change they deem necessary in big picture social/medical realms. In politics, the loudest voices effect the most change.

How these raised voices become a source of offense for those of us who do not take the opportunity or have the courage to yell, is seriously beyond my cognition.

It's not like there's some autism census and if we don't fit the profile, we're going to be struck off the roll. If you don't agree, you don't agree. If you don't think we need to change, then all that's going on is that you disagree with the people who think change is necessary. Sit back, and revel in the status quo. We're not required to all vote together.

If you think something different to the loud-voiced message is necessary, stand up and yell your message. Surely the diversity of the condition allows for that.

In our case, we have an uncommon combination of vaccine injury and medical crisis. In my IRL friends' cases, there's gut wrenchingly severe all around unsupported-by-the-system disability, degenerative illness, burgeoning behaviour crises, devastating mental illness of suspicious origin, fully recovered, needing minimal support, chronically high achieving and quirky... the whole gamut of autism experiences.

What links us as adults, is the fact that we all gave birth to children who ended up with a diagnosis of autism. 

We don't all agree about what needs to happen in our individual cases, or in autism broadly. We don't all play the same role in our various communities, in autism related matters. We do all agree that we want our children as healthy and happy as possible. I don't think my group of buddies are all that different to any other group of parents.

Yet, often discussions about our diversity of needs ends up in curiously pointless tension, as though it's possible (or necessary) to come to some kind of social media consensus.

By admitting that some things suck in my world, I am not telling everyone their lives suck too - we all have a different day to day measure of suck. By detailing what's suckful, I am not pointing universal 'this sucks' fingers at anyone - what sucks for me might be a day at the park for others.  By agitating to change the things I call suckful, I cannot expect consensus.

How could we all want the same thing? Remember the whole, 'you've met one autistic person...' idea?

Here's what I do know, though.

If I was able to get myself close to those in positions of decision making power, I would make sure I had been briefed by every single stakeholder I could identify. I would read and talk and listen and watch. I would do my damndest to have as broad a background as I could before I opened my mouth.

Would I say what I thought was important, once I was in front of the power brokers, though? You bet I would. If I had worked my behind off to get to that meeting, I would, for absolutely sure push the agenda I value. Would I feel informed by all I had heard/seen/learned... sure, I would. But, you don't get to the politicians without being political. And you can't be political without playing a good spin game.

A blurry, soft indistinct message doesn't fly. A maintenance message doesn't need to fly. It's already up there.

I know how much work it takes to get any voice heard in the corridors of power. I have ultimate respect for those who devote the time and energy to make that happen. If they happen, in autism terms, to be people I don't agree with, then more fool me. Maybe it means my message hasn't got political legs. Maybe it means I should get off my chair and take some voice lessons.

In this last week, as the serious life-long nature of our son's challenges have been driven home to us, I have settled on two clear messages. The first is simple... it sucks, and no-one on a different journey can tell me it doesn't. It may not suck forever, and I appreciate the caring platitudes very much, but it sucks now.

The second is that being given this news in the context of a condition that has no known origins and no known causes and no known cure... is not good enough.

It's not even close to good enough. It might be for some and their perceptions of the condition they live with, but not for me and what Billy has. I can't imagine I would be doing the future any kind of favour if I just quietly accepted this, mused about difference and had another coffee.

Accepting and loving autistic people, does not mean accepting and loving the fact that the condition exists for no known reason, with no known cause and with no known cure. I do not accept and love the fact that it is a non-specific amorphous umbrella that continually whacks my child without notice, even if it doesn't whack others in the same way.

So, I guess I'm saying, permit us our grumbling. Allow us to revel in the suck. Try not to be offended, there's no point. It's coming from a place of honesty. It's actual, genuine passion. It's real life. Poop and all.

And from here, surely, the only way is up, or out, or around... no matter to me, as long as it's different to now.

Thursday, September 6, 2012

At Hopeful Parents...

Roots, wings and scary things doctors say.

Click through to Hopeful Parents, and read some other people's stuff as well.