Being scared to death of your children making mistakes is actually normal for most parents facing their children leaving the nest. It's even more scary if the child has a developmental disability, but it's still the same kind of fear, just intensified.
One thing I really dislike about guardianship is it allows parents to act on that fear in a way that restricts their disabled child's rights, when they'd never be able to do that if the child were nondisabled. It's like when it's someone with a developmental disability, suddenly it's "fear -> guardianship" instead of "fear -> preparing them and learning to let go and let them try on their own".
When I was nearing adulthood, nobody specifically mentioned guardianship in front of me. But my neuropsychologist told me that I was not a real adult and that he and my parents would continue to make my decisions for me, because I was in the system. When I applied for SSI, they almost made my mother my representative payee, and they did that without even thinking about it until I was like "hey WHAT?" (It would have been especially bad due to certain issues going on at the time that I'm not comfortable discussing in public, but suffice to say even being on the same bank account was bad news.) When an autistic self-advocate encouraged me to get out from under the thumb of my neuropsychologist, he insinuated that she had personality disorders and that I shouldn't trust her. And yet, trusting her got what I needed in life and trusting him just got me being subordinate to someone for no good reason. So I left the neuropsychologist even though he threw a massive snit fit over it and tried to demand that my parents do something (fortunately they were on my side, although worried).
I'm afraid that if I'd stayed under that neuropsychologist, he would have either kept me under the de facto guardianship-type crap he was imposing on me to begin with, or actually tried to encourage my parents to apply for true legal guardianship. And I would not have had the life I have now. I do get help from a lot of people, but I make my own decisions when I think myself capable of doing so. Some of the decisions I made were really terrible ones. But... I needed those terrible decisions in order to learn how to make good ones. You can't always learn if you can't make the mistakes that learning so often comes from. And I feel like I came so close to a guardianship (or something just like one without all the paperwork) that I am sometimes surprised I am where I am now. Under guardianship, I think I would have developed severe emotional issues, but on my own I have lost all the severe emotional issues I used to have. It wasn't fast and it wasn't easy but it came from being able to make my own mistakes in the real world and learn from them.
I do know people who really... I don't like guardianship but I can see why people think of it for them. I know someone who spends all his social security money on toys and doesn't have money for food (then complains about being poor), and then when they got the equivalent of food stamp money they spent all that money on toys too. But in his case I don't think it's autism or even his other developmental delays causing the issue, it's some incredibly severe emotional issues that make him deliberately take ridiculous risks, and nobody is addressing this because "he's autistic and ret*d and we couldn't expect him to do better". (And that's very much how he wants to be seen. He completely flips out if anyone so much as hints that he could have the tiniest amount of emotional problems, then he tells a bunch of flagrant lies to make himself look better, and if confronted on the lies he collapses into tears about how he'd never lie to anyone because he's autistic.) He somehow manages to survive on his own okay, despite his terrible decisions, and despite the fact that he seems to always spend money that he shouldn't have that amount from SSI. But there are people considering guardianship for him instead of working through the issues that are causing him to do these things.
But I have to say he's pretty unique among autistic people I've met (and among people with intellectual disabilities). If most of us have issues with overspending, it's truly from not having the sense to do it, or having trouble with math, or planning, or other things like that. It's not because of... stuff I can't even describe because it's so tangled. And I think a lot of us do understand when we need help with things, and if we do understand that, then guardianship is much more rarely necessary. I also think there ought to be alternative options for people who just cannot handle money no matter what. Guardianship is such a huge thing, there has to be some better way.
But for most of us... I feel like sometimes we get guardianships because people are unwilling to let us fail, and because parents don't always recognize their fears for us are just an amplified version of normal, and guardianship lets them have these fears without the usual having to get over them and let the child try spreading their wings before jumping in and "fixing" it all. (In fact, I think this happens for disabled people over far more things than guardianship. When parents have normal-if-amplified fears about us, they're encouraged to keep the fears and restrict our lives on that basis rather than go through the normal process of letting go.)
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"In my world it's a place of patterns and feel. In my world it's a haven for what is real. It's my world, nobody can steal it, but people like me, we live in the shadows." -Donna Williams
01 Apr 2011, 4:17 am
Has this happened to you?
