Solutions to Self-Advocate/Adult Autistic Issues
A lot of autistic self-advocates criticize the mainstream autism community for focusing so much on children on the spectrum, rather than arranging for help for the serious issues that adult autistics face. It's a matter of focus - on children and cure, as opposed to adults and support.
But it seems like many autistic self-advocates (myself included) do the same thing we criticize others for.
A couple of events made me realize this. First, for quite awhile, I've been a volunteer expert at AllExperts in the category of autism. And I've easily handled many questions from parents of autistic or possibly autistic kids, discussing issues such as how to get a kid to stop playing with spit and how to tell if your 9 week old is autistic without much difficulty. That's the typical sort of questions I get, showing the same kind of focus that autistic self-advocates criticize in parent-run autism organizations.
But one question I got was something I really struggled with. An autistic person was kicked out of his home, living in a salvation army hostel, and asked my advice. I hope my answer helped, I think I did fairly well, but it was really hard. I had to do a bunch of research and pondering and try to figure out if the organizations I was reading about would do anything to help him. This wasn't an easy answer to write like all the parent questions.
Recently, I was reminded of this by a question that struck the same feeling in me. This one was posted on several autism listservs I frequent. An autistic woman who lives in a group home is currently being threatened with going to jail for having what appears to be a relatively minor autistic meltdown. She didn't hurt anyone, yet they're calling her violent. And I don't know how to help her, what to say to her.
We use stories like these in our activism, to show why more support is needed, but when we are called upon to help someone in a situation like that, what do we do? We don't know how to help, we don't know what to do. We don't have the easy answers like we do for parent issues. And that's at least partly because even as we criticize their focus, we let it direct our focus. So we don't think as much about how to help these people no one seems ready to help.
It seems to me that not only are your beliefs about various issues important, but so is what you choose to discuss. And so often, the curebies successfully direct conversations about autism to their issues, their focus, and we don't fight that well enough.
So I'll do the research to see if I can help this woman. I'll try to at least direct her to someone who can help. And in general, I'll try to find, or make if I can't find, supports and solutions for these issues.
But it seems like many autistic self-advocates (myself included) do the same thing we criticize others for.
A couple of events made me realize this. First, for quite awhile, I've been a volunteer expert at AllExperts in the category of autism. And I've easily handled many questions from parents of autistic or possibly autistic kids, discussing issues such as how to get a kid to stop playing with spit and how to tell if your 9 week old is autistic without much difficulty. That's the typical sort of questions I get, showing the same kind of focus that autistic self-advocates criticize in parent-run autism organizations.
But one question I got was something I really struggled with. An autistic person was kicked out of his home, living in a salvation army hostel, and asked my advice. I hope my answer helped, I think I did fairly well, but it was really hard. I had to do a bunch of research and pondering and try to figure out if the organizations I was reading about would do anything to help him. This wasn't an easy answer to write like all the parent questions.
Recently, I was reminded of this by a question that struck the same feeling in me. This one was posted on several autism listservs I frequent. An autistic woman who lives in a group home is currently being threatened with going to jail for having what appears to be a relatively minor autistic meltdown. She didn't hurt anyone, yet they're calling her violent. And I don't know how to help her, what to say to her.
We use stories like these in our activism, to show why more support is needed, but when we are called upon to help someone in a situation like that, what do we do? We don't know how to help, we don't know what to do. We don't have the easy answers like we do for parent issues. And that's at least partly because even as we criticize their focus, we let it direct our focus. So we don't think as much about how to help these people no one seems ready to help.
It seems to me that not only are your beliefs about various issues important, but so is what you choose to discuss. And so often, the curebies successfully direct conversations about autism to their issues, their focus, and we don't fight that well enough.
So I'll do the research to see if I can help this woman. I'll try to at least direct her to someone who can help. And in general, I'll try to find, or make if I can't find, supports and solutions for these issues.
Labels: abuse, accomodations, activism, autism, institutions, services
posted by Ettina at 10:28 AM
2 Comments:
As my son has recently joined the adult world i understand what you mean about the focus being very different.
I do hope you can help this woman.
big hugs! my sister works in a group with autistic adults and she often speaks of the same things you mention here...i hope you can help this woman...i wouldn't even know where to start
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