Valerie Foley

Emotion, the enemy of nothing…

In Action, Parent issues, Perceptions on April 14, 2013 at 3:32 am

The arsenal of  ‘you crazy autism parents are wrong’ weaponry needs some attention paid to it. If you start picking the labels off it, there’s truly nothing meaningful underneath.

When evidence and science are not being foisted about as reasons why we are all unreliably nuts, we get ’emotion’ thrown at us. I’m talking choice arguments like, ‘your logic is clouded by emotion’, ‘you are inventing irrational theories because of your emotions’, ‘you are just being emotional’… you know, the kinds of statements that make domestic arguments go so very well.

Let’s pull it apart a little.

On a purely human level, any parent who has seen their child struggle with anything, gets the emotions we are talking about here to a greater or lesser degree – frustration, grief, desperation, hope, pride, anger, resolve.

On an intellectual level, these are the emotions that provoke thought, rigor, action.

On a historical level, these are the very things that have made invention, innovation and change happen.

So, I’m just not buying that emotion is a counterproductive part of this journey.

Instead, I’m thinking throwing shade over natural processes of human existence is more of a deliberate tactic to divert the need for change.

We are parents (genuinely emotional job).

Our children are struggling (stimulates the odd emotion).

We want to know why and we’re being denied answers (tends to provoke responses in the right kind of person).

There’s no doubt there are many parents who share a similar journey to mine who do not want answers. Many of them are friends of mine (maybe yours too). They are flat out living. They trust the experts will take care of it. They do not care why their children have autism, they simply care about living the best possible life with it. Some choose to view their autistic children as gifted, some choose to view their autistic children as irritants, some have no view of the autistic part of their children at all. These parents can be vocal about their stance, or not. While I am not one of these parents, it is absolutely not my place to judge their choices. Speculate, privately, maybe a little, but not judge.

My take on the emotions that motivate me in this game?

If I didn’t let them be felt, express them, share them, acknowledge them, recognise them in others… I would be denying reality. Plain and simple.

Our personal story is not one of the most extreme, and yet…

We have watched our child be tortured (literally) by the presence of other children and the noise they make.

We have watched our child become paralysed (literally) in front of our eyes by a provoked auto-immune disease.

We have watched as his body has been poked, prodded, drained, infused, monitored, imaged (literally) as doctors pondered and never fully answered what was/is happening to him.

We have watched as trusted professional people who refused to understand him, mishandled him in a variety of settings. We have watched as those same people, under scrutiny, lied about their actions and their understandings.

We have watched our son, through all of this be a human being who values joy, humour, compassion and love over everything else.

It is not surprising we have some emotion tied up in all of that.

It is surprising that ‘experts’ would use the presence of that emotion to question our credibility.

And we are, again, by no means the most questioned.

I see, again and again, change agents in the autism community torn down by others. It can be other parents doing the tearing, or ‘experts’ doing the tearing. They do it openly, they do it subtly. It doesn’t matter how they do it, to me, though, the fact that they need to do it is the concern to me.

If, as I read this morning on Facebook, autism is not a disability and just a lovely set of accommodate-able quirks, and we should all be happy with that as a standpoint, because our peadiatricians (80% are on the spectrum apparently) agree…

… then, why the need to discredit those who think differently? Especially by using their normal parental emotions as reasons.

If more and more autism is OK with you, why be threatened by those who think it is not?

Forget the numbers (as if you can), forget the future (as though you can) and focus purely on the experience of being a parent and seeing your child unable to cope with normal life. Your child has a condition that makes the simplest things anywhere between troubling and impossible. No one knows why. No-one knows if it will ever go away. You may even suspect your child was once healthy, and they became… not healthy.

The best response strategy is acceptance, right? Put a lid on your emotions and get on with life. Keep Calm and Carry On.

Here’s the thing.

Do nothing, is a deliberate social choice.

Socially, economically (in the short term), politically (in a shortsighted kind of way)… do nothing is also much much cheaper.

When your doctor says, ‘you are clouded by your emotions and your gut instincts about what caused your child’s autism are wrong’ – why do they do that? What is the aim there? In the moment, I’m sure they just want you to feel better. But the social aim about the condition called autism is ‘do nothing.’

When other parents say, ‘it’s OK, doesn’t Bill Gates have an ASD?’, the social message is ‘do nothing’.

When autism service providers say, ‘we can teach your child to cope’, the social strategy on autism is ‘do nothing’.

Where the personal meets the social, I get to this – It’s not just about me and my family, it’s about all of us.

When we normalise the existence of a condition, we are not paying tribute to those who have it, we are condoning the actions of the society that does nothing to stop it.

When we question the credibility of the witnesses to the birth of that condition, we are choosing to condone doing nothing.

If you want to do nothing, do nothing. It’s your life. But do not work against doing something.

Because if you do,  your children and your children’s children’s children’s children will be paying for that choice – emotionally and literally, in the provision of disability services, housing, welfare, education, medical care.

Know that you are saying it’s OK for more and more children to be diagnosed with autism, and if trends maintain, those children will not have the kind of autism that makes them a quirky paediatrician or a sneaker wearing billionaire. They will have the kind that puts them in hospital a lot, on medication a lot, and in the presence of befuddled first responders a lot.

Obviously, that is a choice you are free to make.

I am not OK with that. My baby will not be a medical professional. He is unlikely to be any kind of professional. It is not easy to say that out loud.

I am allowed to be sad. It’s OK for me to be disappointed. There is nothing in the world wrong with my being angry. The problem, for me, would come if I did nothing with those emotions.

In my mind, anything that compromises someone you love is worth doing something about.

I love my own child to the moon and back, which is why I can acknowledge that what needs to change it is way way way bigger than even that.

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