My Future
OK, parents of autistic adults who can't live independently.
You think it's scary, imagining what will happen to your child when you die? Imagine how scary it is for them.
I'm 28 and I live with my parents, because although I'm smart and capable in many ways, self-care is not one of those ways. I have severe executive dysfunction, and I work so hard with so little result.
I see how much I'd need to do to live on my own, and I know how far I am from being able to do it. And it terrifies me.
I can't find help, because I'm smart and talkative and articulate, and no one believes that a developmental disability can make you as disabled as I am without affecting intelligence or communication skills. Even if I could, most of the programs available don't pass the midnight burrito test, and I barely survived the public school system. I can't live like that.
And you know what, parents of autistics? Most of you aren't helping. You're complaining about what a burden your children are, you're calling them low functioning and saying people like me don't need help and people like them don't need choices, you're focusing on early intervention and quack treatments and pretending that your kids will stop being autistic if you try hard enough, you're setting up the programs that don't meet the burrito test, you're putting your heads in the sand and pretending it's not a problem, and a few of you are even talking about killing your children so they don't outlive you.
There are a few parents who are standing by us in the fight, and I appreciate you guys. But it's not overstating things to say that some of our worst enemies, as autistic people, are parents of autistics.
And it makes me so furious, because you guys have so much power. I'm a disabled adult who doesn’t know how to run things myself or convince others to help. I have very little power to help myself, much less others. But you guys are strong. And instead of being our biggest allies, you're our worst enemies.
You think it's scary, imagining what will happen to your child when you die? Imagine how scary it is for them.
I'm 28 and I live with my parents, because although I'm smart and capable in many ways, self-care is not one of those ways. I have severe executive dysfunction, and I work so hard with so little result.
I see how much I'd need to do to live on my own, and I know how far I am from being able to do it. And it terrifies me.
I can't find help, because I'm smart and talkative and articulate, and no one believes that a developmental disability can make you as disabled as I am without affecting intelligence or communication skills. Even if I could, most of the programs available don't pass the midnight burrito test, and I barely survived the public school system. I can't live like that.
And you know what, parents of autistics? Most of you aren't helping. You're complaining about what a burden your children are, you're calling them low functioning and saying people like me don't need help and people like them don't need choices, you're focusing on early intervention and quack treatments and pretending that your kids will stop being autistic if you try hard enough, you're setting up the programs that don't meet the burrito test, you're putting your heads in the sand and pretending it's not a problem, and a few of you are even talking about killing your children so they don't outlive you.
There are a few parents who are standing by us in the fight, and I appreciate you guys. But it's not overstating things to say that some of our worst enemies, as autistic people, are parents of autistics.
And it makes me so furious, because you guys have so much power. I'm a disabled adult who doesn’t know how to run things myself or convince others to help. I have very little power to help myself, much less others. But you guys are strong. And instead of being our biggest allies, you're our worst enemies.
posted by Ettina at 7:23 AM
1 Comments:
Hey Ettina. Thanks for this post. As a parent of an adult autistic I really appreciate your views. I'm having a go at safeguarding my son's future without his parents by forming a Microboard. Its a group of 10 peers who have made the commitment to be there for him in the long term and to uphold his right to self determine and have quality of life. Two of his board members share house with him and support him at home. He doesn't speak (he has Angelman syndrome) but from all of his behaviours and what he says on his device he seems to really like the arrangement. When he visits me after a while he asks to go home - this makes me so happy, that he is no longer emotionally or otherwise dependent. You can read more about microboards here on my website here: microboard.org.au or in Canada here: http://velacanada.org
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