Does a diagnosis mean risking one's right to be independent?

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Joined: 21 Jan 2017
Age: 50
Gender: Male
Posts: 115
Location: San Antonio, Tx

10 May 2017, 1:14 am

I'm a week away from getting tested, but as I've said in other postings, more than likely I do have Asperger's. I see that a lot of aspies are more or less independent, but I also see from what I've read online that some very high functioning adults with no intellectual or cognitive disorders ending up having their parents remain their legal guardians or else have someone acting as guardian and ultimately being very restricted in what they're allowed to do. I've seen something similar with physical disabilities where someone who is merely mobility impaired having similar restrictions imposed on them, such as being limited to either living with their parents permanently or going to a group home and the parents gaining control of their finances despite being able to handle those matters on their own.

Despite my own physical disabilities I've been relatively independent for almost 20 years, living in different apartments and taking college classes. I've had varying degrees of help from my family and that's worked well most of the time. However, even though for a long time no one really knew about things like Asperger's, my parents unfortunately seem to have gotten the idea that perhaps I'm not totally "all there" enough to be seen as responsible, and while they've never had the legal right to interfere with whatever I'm doing, they've still assumed the right to have a say in certain matters even when I was either an older teen wanting to do age-appropriate things or adult things after I turned 18. Basically, I think even when Asperger's wasn't that well known, they read about autism and saw that I do exhibit some of the traits, but fixated on things like not appearing as mature as everyone else and executive functioning issues, but rather than just being up-front about their feelings, they've been either subtle or passive-aggressive about it. Essentially, what was happening was that as I got older, going through the pre-teen and teen years, I got to be grown up when there was school or something mundane going on, but treated like someone younger pretending to be a big kid or a teen when I was more enthusiastic about the "cool", but totally age appropriate things older kids and teens would be into, and there's always been insinuation that indeed my family does sometimes see me as perhaps mentally not totally "all there" despite everything to the contrary.

When I turned 18, it seemed like things sometimes got really tense over really petty things- basically I'd do something in line with other 18 year olds but my family would react as if I was a kid pretending to be an adult. I became disabled when I was 23 and it seemed like my family and others were trying to attach supposed mental issues to it and trying to meddle in things I was capable of, and legally allowed to, handle on my own. There were situations where either my parents interfered enough to make things difficult even without a legal right to do so, or else some authority figure would insist that I had to have my parent's consent before certain things happened, such as getting counseling or pursuing getting my own apartment- again, not a legal thing, just a social rule based on assumptions about persons with disabilities not being mentally fit enough to handle their own affairs. I've had a few very angry confrontations
with healthcare workers and social service people when they found out I was handling things myself and didn't have my parents signing off on things for me.

That said, from an ASD perspective, I've been a aspie support group meetings where a few people have asked me who my guardian was, and seemed a bit suprised that I live alone and just have my parents helping pay for the apartment and with other things as needed.

So is my situation unusual? I'm assuming that post-diagnosis, nothing will change. However, more recently my parents have been trying to get more involved in things to the point that it's caused some tension, and recently my parents made an offhand comment about them declaring themselves my legal guardians because they think that might expedite getting better health coverage if they're pursuing it on my behalf rather than me doing it myself. I panicked but explained to them that it's a bad idea- one, I've seen too many high functioning people with no rights because their parents somehow made themselves guardians after they turned 18, and two, even if my parents were hands-off about everyday things, I'd still have to deal with situations where something important is stalled because I'd have to get my parent's permission.

So, even if I turn out to be diagnosed as an aspie, but have no intellectual or cognitive impairments, and have been independent for years up to this point, can I assume that my parents can't get guardianship on their say-so merely because they want to meddle? I get really paranoid about that. I've had my friends assure me that if one is mentally competent to handle their own affairs, no one can just arbitrarily step in merely because they disagree with how they live.