Something's still troubling me...
In the same week, two posts, one celebrating some people with Autism in all their beauty, not a bad word said. The other outing the bitterly harsh realities of some people with Autism and what they feel it has robbed their loved-ones of and their families. The comments often state a hatred of Autism. They are at odds. They inspire each other.
If the Autism impacts in a way that, 'the good outweighs the bad', fantastic. I am jealous. 'Perhaps he'll be the next Einstein'. I am very pleased for them. In our case, at this time, the bad outweighs the good and he and we need a lot of help to support Axel to have a good life... to even stay safe! I find it hard when I read, 'Autism is a gift'.
I neither love nor hate Autism. It is something that has come into my life and I am managing the best I can and I am finding it very hard. Actually I'm bullshitting. To be clear, I do not love or hate Autism BUT I hate AXEL'S Autism... there you are. His is so damagingly pervasive it means I can't get to live with him. I hate it. And there is perhaps a key to unlocking this stand-off... we need to take each case individually and the families too. Every one is SO different it is ridiculous to generalise that Autism means this or that. Support the individuals please. (Thank you Angela Pell for that wisdom).
Axel's Autism means that life is very hard for him and in turn very hard for us. Axel wanted Anusha to chase him more yesterday and I'd asked her not to as he was getting over-stimulated so he severely pulls her by the hair up the stairs. No malice, just his way of communicating. Anusha in tears again. When I intervened he deeply bit my arm again, fourth bite this week. The list of difficulties is inexhaustible, my stamina isn't. The physical damage to our flesh and the house is unacceptable. My carers are leaving for biting and danger.
I could ask for more help from society. I question my patience, attention to detail, my having tried enough. And then I breathe out and think I know that Axel, at this time, needs a dedicated team to meet his needs... a team of expert athletes. I can not support him adequately. I am not enough... what kind of gift is this to him or us?
What I get is that the 'Love Autism' group hate the defamation of the 'Hate Autism' group as it impacts on their schooling, bullying, attitudes of society, prejudice in the workplace, feelings about themselves/their loved-ones. We must be positive about Autism. And we really must.
The 'Hate Autism' group are infuriated by the 'Love Autism' group as it denies them their feelings. If Autism was all about gorgeous, quirky but delightfully talented folk that we get and society needs to wake up to why is this group feeling so desperate, frightened, inadequate and in need of profound support. The harsh realities of this group must also be known so that support, funding, appropriate schools are built, appropriate emotional support is devised.
I think both groups love Autists, the people, and need very different kinds of support. Our fear is that the others truth will adversely impact on our support. My wish is that we respect each other and find a way to relate not compete, comprehend and not beat. To appeal for the support we need alongside each other.
It's hard enough.
The two posts:
http://www.facebook.com/
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