I'm new-- "guardian" of AS relative

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Hi-- I'm new here. Basically I need a place to get support for dealing with my middle-aged adult AS sister. And frankly, I need a place to vent. My sister lives alone on disability and with help from the family. I'm her primary "helper". I do my best to be understanding and patient but frankly, she just absolutely drives me nuts with complaints about the world and demands on my time , energy and resources. And I rarely even get a "thank you".


The ironic thing is I'm probably borderline AS, myself. Growing up, I had no social skills, until one day in high school I decided I would learn how to fit in. I began closely observing how other kids interacted socially. Then I imitated them until it became more or less automatic. By the end of senior year I had a small group of friends and even a boyfriend. I'm still a geek and not very comfortable in social settings, but I get along just fine in the world. I suspect I would have tested as AS at age 12, but not now. So it is like I can see both sides of the fence. My sister, however, is of the opinion that the rest of the world should bend over backwards to function in the way she would like it to function, i.e., that her wants and needs should take precedence over everyone else's. Since she learned she is AS, she had read a lot about it and now believes her 'specialness' means she should not have to make adjustments. (Remember this is *not* an AS person who is self-supporting.)


Dealing with S. is a constant strain on my nerves. She is really good at pushing my "guilt" buttons. I wish I could make her happy, but it is not possible to give her everything she wants. (Not that even that would necessarily make her happy.) I remind myself constantly that I cannot be responsible for another person's happiness, but it is difficult to let it go.


Anyway, that's it in a nutshell. Is this an appropriate place for someone like me to get support?

I don't know about the 'appropriateness of the place', but I certainly sympathise with your situation. Any kind of awkward relative can be hard to put up with at times, and if she's in some way dependent on you I'd imagine that would make it even harder.

Have you spoken to her about what you said above? In some cases AS people (any people, really) just need to be told things - give her a declarative statement such as 'I can't put all of myself into making you happy all of the time - I have needs as well', and don't let her try to swerve you from it. There's a difference between helping and being a servant.

Although on the other hand, there may be some things that she just can't see. So hopefully if that's the case you won't feel she's just trying to be difficult, either.

Anyway, no idea if that was helpful. Feel free to keep posting here, though, even if it's just to have a rant now and then, or pm me if you want to talk but don't want to publicly post.

Hi,

Not sure how much support there is here for someone in your situation, but feel free to post. Maybe also look for a local support group for families of autistics. I'm not sure what the answer is to your situation. Unless you can just wash your hands of her and be done. I'm really shocked that your sister is middle age and getting disability for AS because a lot of middle age people struggle to even get an AS diagnosis.

Does your sister ever go to a counselor? Does she have other things going on besides AS that are contributing to the problem? That might help to have a professional talk with her. Otherwise I don't know what the solution might be. I'm sorry you were stuck in this situation. Just don't let her make you think all AS are like her. Some of us work, live alone and are self supportive. Please try to find a support group for caregivers and try to enlist help from other family members.

Hi , and thanks for your reply.

We are "hooked in" with a group which provides counseling and support to people with autistic spectrum disorders and their families. Nevertheless, the support is rather limited because even these professionals have little experience dealing with adults on the spectrum, much less adults who weren't diagnosed until middle age. They try, but they aren't quite sure what to do with her. Mostly they seem to act as a sounding board for her complaints. The present counselor thinks S. may benefit from medication because S. is a very anxious and fearful person. I don't like the idea of popping pills to solve problems, but I think in this case, it might be worth a try. S., however, is very resistant. She worries about side effects and about losing her AS "uniqueness". I have tried to reassure her that she wouldn't be forced to take anything if she didn't like the side effects. As for the uniqueness--- in my personal opinion that is fine if you are functional and reasonably content in life. But she's quite anxious and unhappy.

I suppose I could "wash my hands" of her--- but I think it would be a heartless thing to do. She needs someone to watch her back. When I took over this job from our parents, I resolved I would listen to her, give her opinions due consideration, and treat her with the respect all human beings deserve. (She did not always get this from our parents.) It's been tougher than I imagined.

Re disability benefits: S. actually got this on the basis of an earlier diagnosis of other mental issues (probably a misdiagnosis), before we'd ever heard of Asperger's. She got the AS diagnosis about four years ago. The earlier diagnosis never quite seemed to fit, but AS makes complete sense. (Though she's got some other neuroses probably stemming from decades of living with undiagnosed AS. )


Yes, I know that plenty of AS people are self-supporting and functional. And I know a lot of them have worked hard to get to that point. They deserve a lot of credit for that.
Knowing this, it frustrates me that my sister is unwilling to work on skills to help her adapt to the world as it is. She complains about the way the world is, but will not accept that it is unlikely to change to suit her.

Welcome to WP!

Tim

Hi Louise--
Funny I thought I replied to your post a little while ago, but it seems my post evaporated! I've tried to explain to my sister about my time being limited, but she doesn't quite seem to get it. For instance she'll keep talking on the phone long after I repeatedly say "I need to go. NOW". I know the talking is part of AS, so I make allowances for it. I'd hang up on anyone else. I don't hang up on her, but sometimes I have to be abrupt and then I feel bad about it.

She is dependent on me for advice and assistance with a lot of slightly out-of the ordinary things, such as car and home repairs, dealing with illness, etc. The stickiest problem is that I am responsible for buying things she needs out of a small family fund. Often her perception of "need" does not agree with mine, and this leads to conflicts and feelings of guilt on my part. I'd like to buy her all the stuff she wants but I just can't.

Thanks for the welcome.

Last edited by Kensho on 02 Feb 2007, 3:40 pm, edited 1 time in total.

Thank you!

Possible idea: tell her when you'll need to go in five minutes. Then four minutes later, tell her you'll need to go in a minute. Then a minute later, put the phone down. If you keep saying 'I need to go now' but then letting her just keep talking, she'll think you can't actually _need_ to go 'now', as you didn't last time you said it, or the time before, etc.

What a great idea! I do that with my little boy to get him to leave the park, and it works with him. I never thought of using it with S. I must remember that she thinks very literally. Thanks!