How can I get rid of my community aids?

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Hey, I have an aid (community worker) that visits my house 4-5 days a week and uses some of my time out in the community, but I feel anything but happy from it. How can I tell my mom who won't budge easily, that I want to just be done with those services, without sounding like a heartless jerk to them or mom. I actually feel more miserable than I was when I was just sitting at home doing nothing. I really want to be independent myself, but I don't know what my aids want. It seems like no matter what, I'm always going to fail at something they never explicitly told me about properly. I feel like I am 5 all over again.

It's not fair. I know my mom kind of insisted with me to get these services provided by my state, because she doesn't want to see me being a homebody doing nothing, but how can I convince or articulate my needs/wants to her without sounding like I'm complaining?

There mission is to try to make me independent, but I don't feel that way, nor do I feel like making any progress. Heck, I might as well be regressing since the services started. It's been over a year now.

Once you get these people into your life it's very difficult to get them out. What is your diagnosis on the spectrum?

My official diagnosis says "autism spectrum disorder".

I'll do whatever it takes at this point. I honestly feel like I'm regressing, yet my parents and staff still think it's good for me.

K_Kelly, maybe you could write a few things down and explain why you don't feel that you want or need a community worker, then give it to your mum so you can both talk about it?

It might be easier for you to articulate your feelings in this way so you don't lose track of your thoughts when you discuss it. Use bullet points, then briefly explain your feelings.

You and your mother then need to tell your community worker how you feel and that, for the time being at least, you don't require their services. It could also be that you haven't developed a rapport with the worker and you need to find someone more suitable.

I've found that the more people try to push me into things, even if it may benefit me, the more stressed and resistant I become which makes me take a huge step back.

I can understand why your mother wants you to make use of these services because she'll be under a lot of stress too, and in her mind, she probably thinks they'll help in the long run, but if you aren't ready or comfortable it will only exacerbate your misery.

The fact that you haven't made any progress in over a year indicates that this type of service is currently of no use to you and you need a break from it.

This is it, but I think she's still going to be insistent for "my own good" :

▪ My CI staff make me feel less "normal" than I felt before the services began

▪ The staff interferes with a lot of my own time and my ability to do things as a regular adult (but it's hard, she believes I had too much free time already)

▪ Staff being involved in my routine contributed to a lot of stress

She probably will be, so you might have to be patient. Mums always think they know what's best for us! Sometimes they do, sometimes they don't.

Like I said before, maybe you could soften it a little by saying that you need a temporary break from this person and see how things go.

You've made some important points there, stick to them and point out that someone else may benefit more from these services and that they are being wasted on you right now.

Hope all goes well for you, good luck!

Tell your aids how you feel. They may make adjustments or try to help you in a different way if they know. Tell them specifically what is not helping you and tell them specifically what you need.

It's normal to feel like you are regressing when you are learning something new.

I have to empathize with your parents here. Mostly because I think that their POV hasn't been brought up yet. They are housing and supporting you full time, right? And you don't contribute to the bills or anything? And you are an adult?

So, here's the thing. Just being left alone is not how life works. We people on the spectrum need more time alone to recharge our batteries, but never doing anything stressful is not how life works. Every single human being does stressful things sometimes. Every single one.

Have you considered that your parents are going to die some day? I don't mean to scare you, but your parents are probably thinking about that. Someday, they will die and you will probably be a healthy adult when it happens. What are you going to do when they can't take care of you anymore? Are you going to just let the state take you to a group home where you have VERY little control over your life, and WAY less privacy? A lot of those group homes don't even give you your own bedroom. People have to share even that.

If you have some minimum life skills, and you are able to function in the world on a basic level, you will be able to be independent, even if your parents die or become too sick to take care of you. You need to be able to grocery shop, go to the doctor, take care of bills, and visit the state buildings so that you can keep yourself on disability.

These are really important goals. I strongly suggest that you work on learning them.

I just want to put a plug in for all of us to express some gratitude for our parents. Nothing in your post suggests you don't do this. I'm just saying so as a general good idea. If they are supporting you, thank them and be grateful to them. You aren't owed a place to live with them. They could have been awful and simply kicked you out at 21 years of age.

*Edited to try to soften the language somewhat. Still trying to figure out how to speak the truth without sounding like Darth Vader.

Last edited by somanyspoons on 25 Nov 2016, 4:24 pm, edited 1 time in total.

As always, I agree with somanyspoons.

It sounds to me like you're doing what a CHILD does: basically, whining----and, your workers / parents are trying to get you to do the things, that an ADULT does: life skills. Which do you think is more important (NOT what is "more fun")?

But I don't know what the staff actually want from me. It feels like I can't keep up with what they want.

^^ Then, ASK them!! Yes, a professional should be more communicative in regard to your development / goal plan (or, whatever it's called)----but, if they're NOT, then YOU must ensure that your needs are being met----ESPECIALLY, if you're wanting to be more of an adult / do more adult things; don't wait-around for someone else to do it, FOR you (which is probably what has been happening, too often, thus-far; which is probably ONE of the reasons, at least, why it's taking you so long to do it, now).

That's a much better place from which to start! You are a grown man and it's really important that you be involved in any goal setting or care plans. If you aren't clear on what those goals are, you need to be making a fuss.

The organization that is training your community aids should also have a case manager that is assigned to you. This is the person to talk to. They should be trained specifically on how to help an autistic person express what their needs are. And they should be open to you saying that you aren't understanding what is going on here.

You should always know why a community aid is asking you to do something. It shouldn't be a big mystery. If they are taking you out of the house, it should be to work on a goal, not just to goof off.

It looks like you are not from the USA. I am. Here in the USA, it is required that each client has an annual meeting where everyone involved agrees on goals. These goals are kept in a binder and every aid has to mark progress towards those goals. Do you have one of those books? Or can you ask your parents if they have one of those books? Knowing what's in that book could really help. Of course, if you are in another country, you might not have a book at all.

I would be wary of chucking away support that your parents probably fought tooth and nail for. I had TAs in school, not all are good but sometimes when you think you're making a good decision, it turns out that actually the people 'in charge' had a more rounded view point that you haven't quite got the breadth of thinking to have thought of yourself yet.

I agree you need to talk to your support workers - and, if needed, discuss changing support workers with the service. But if they're providing you with 4-5 visits a week there will be a good reason for it. You don't want to wind up in a position where you need the support and aren't able to fight to get it yourself.

What exactly do I tell the case manager? What do I need to bring up? I'm afraid of not being able to address all my needs and wants because I just have trouble expressing them verbally, or even in writing sometimes.

I do live in the US, and I am not in school anymore.

I would NOT suggest talking to your case manager, INITIALLY (people don't like it, when you go-over their heads); I would suggest talking to your case WORKERS (the ones who come and take you outside).

As for what you should say: I suggest starting a running list of everything you can think-of, that you'd like to see your case-workers, DO. Here's a few ideas:

1. I don't want to be treated like a child.
2. I want to be consulted, regarding my goals / activities / what I'm being taught, etc., and what is the expected outcome.
3. I want to have more open conversations about what are MY dreams / interests / philosophies.
4. When I say "I don't want to do that", I want YOU, at the very least, to ask me WHY----and, not just MAKE me do something, because you think it's what's best for me, or that you know-better how I feel.

These are just EXAMPLES----you might not want to include ANY of these----I just wanted to give you some ideas.

Now, one of the things that this list is going to bring-about, is that you're going to have to follow-through, on YOUR end----meaning, if you tell your caseworker that you want to be consulted, then you're going to have to speak-UP, more. If, when they ask you "What do YOU want to do, today?", DON'T say, "I dunno", cuz that only puts control back in THEIR hands, and you will have told them you don't WANT that.

I suggest that, from the time they drop you off, 'til the time they pick you up, you should be thinking-about what YOU want to do / discuss / learn, the next time you see them. I know it's not going to be easy to get your thoughts together / climb-out of your shell (I've had the same problems getting what I say, to match my thoughts), but you're gonna HAVE TO do it----otherwise, you can't complain, anymore, that they're not doing what YOU wanna do, for instance, cuz you did nothing to CHANGE that.

If, after some time (say, a month), they are NOT trying to do what you asked, THEN I would (if I were you) begin to think-about, consulting your Case MANAGER.

Also, I would suggest NOT telling your parents, your plan of talking to your caseworkers----cuz, parents can be WAAAAAY worse than caseworkers, in regard to thinking that they know what's best, for you (your parents may NOT be that way----I'm just throwin' this out there, in-case they ARE); also, it sort-of further PROVES that you're wanting to take things into your OWN hands / make your own decisions / be more adult, if you don't consult your parents.

OK. I worked in this field for 20 years. That's really bad advice. Your case manager is not the enemy. This isn't high school. You aren't tattling. It is normal to talk to the case manager. This is what it is to be a grown up. The case manager is in charge of training and dispatching the aids. Its is up to them to make sure that they are doing their jobs -not you. Grown ups are not the enemy. In fact, you ARE A GROWN UP. Avoiding grown ups becomes kind of impossible if you want to be one.

You could make a case for talking to your parents and letting them go to the case manager. But that would be letting yourself be treated as a child. The opposite of what you want to happen here.

I know it's uncomfortable and hard to do. But you need to communicate your needs in a way that upholds that you are a grown man and you do have a say over your life. You need to start taking the role of CEO of your own life.

What Cat is suggesting would be continuing to argue with people who have no power to change anything. Aids simply carry out orders. They do not make the goals you are working on. They do not get to decide if you go out or why. Further more, since they are the ones who are going to be interacting with you every day, you really don't want to be arguing with them at all. Trust that your case manager has seen this dozen of times. They deal with these kinds of issues every day. He or she will not be shocked and you are not going to seen as some kind of traitor for talking to them.