I always kind of thought that my role in the Hub is not as a leader of a movement, but as a parent. I am learning how to teach my own autistic child- still very, very young- to be able to function and advocate for himself. I can't do that unless I start discussing autism with actual autistic people, so I get a sense of what issues Joey will face, and start thinking about how he might cope with the special needs he has. It is also easier if I have other parents to speak with who understand the concept of acceptance, so that I can prepare for possible problems I will have in teaching Joey, in raising him to be an independent, socially responsible adult.
To what I am doing, it seems I have to fight everyone around me. Now, apparently, that includes autistic adults. That is highly discouraging- even depressing. I was already fighting the ones who clamor for a cure, but also the ones who say they are fighting for rights- including the right to be autistic?
Perhaps it should be considered that the Hub has lots of parents because we are also on that front line of advocating, and we want to get a better idea of what to advocate for. Once Joey turns 23, my rights to help him are greatly curtailed- especially if I am successful in teaching him.
I've got enough people trying to fight me and fight my child. I really didn't need more.
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1 comment:
Interesting. I haven't commented anywhere on this either because like you, I thought I'd found a happy little landing spot where I could finally fit in and learn.
best wishes
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