Saturday, 12 January 2013

Rather no help then bad help!

The words I've chosen to use in the title of this blog entry might cause alot of disagreement and/or discussion.
Good! That is exactly the right thing to be doing when deciding on whether you can support a statement someone is making. I have met so many people with autism, young and old, where receiving the wrong help has meant the only option left open to them has been to close themselves off for all help, good or bad.
Receiving bad help is damaging to the extreme.

I think that there is one essential thing that people without autism often forget, even the very best of health professionals.
Opening up to someone about the difficulties you encounter in life, whatever they may be, is not the same as someone talking about their daily problems. It's one thing to experience them yourself but quite another to actually verbalise them. Turning those thoughts into words make them even more real then they were before.
We all know the saying 'admitting you have a problem with something is the first step'.
I disagree with this in my case and for many other persons' with autism. The first step was going through the pain of not knowing what the hell was going on.
Getting to the stage where you actually verbalised your thoughts is equivalent, I feel, to abseiling down a cliff.
Why you say?
Well, you know how hard the rocks are beneath you as you've experienced falling over before. The cliff face is just as hard, easy for you to cut your hands on whilst trying to find a safe way down. Then think of all those rocks that looked so sturdy and safe that you thought could be used as a handhold, but who crumbled under your touch.
Last but not least, the rope. Something that looks so delicate and yet can support so much; assuming that it is going to function like a rope should function that is.
The key to getting down that cliff face safely is the rope.
What if it had been overstretched? What if it had been called upon too many times and had started to fray?
What if the rope was the wrong rope for the job but wanted to help so badly that it ignored the feeling?
Health professionals are our ropes and yet if they fail us, even with the best of intentions, the results are potentially the same. We crash onto the rocks, pick ourselves up and vow never to go abseiling again.
Yet we might miss out on an amazing future experience because of a previous one they went wrong. Worse of all, the next person who wants to help is going to have to move mountains to get him or her to trust them, and that's before you even start the process of helping someone.
Just getting them to the top of the cliff is a journey in itself. In this society, where everything has to go so quickly (including in the health profession because time is money and there's only going to be less of that in the future!), who are the ones going to suffer?
Maybe we need to take a step back and just take a moment to realise the enormity of the task at hand, as health professionals, family members and people with a diagnosis.
So yes, I'd rather have had no help then bad help. Thankfully I haven't had much bad help, but I'm still working at reversing those effects years after it happened. What a waste of my energy. Energy I could have been putting towards achieving my goals.
Then again, you learn from everything in life and I wouldn't be the person I am today had I not experienced bad help.
I am however relieved that I didn't have to go through that much of it!

Thankyou to my auti coaches, Dick and Pien for providing the best guidance I've had yet.

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