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.

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