Carer discriminating my autism.

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The carer of this supported housing said that I'll never move on to independent living if I don't "get used to noise and people". He keeps telling me to go to this party run by the supported housing network in my borough, despite the fact that my keyworker at my mental health team told him that due to my autism, I find parties extremely distressing and they result in me displaying challenging behaviour and agitation.

The carer said that I've "got to stop freaking out about going to the shops" and "start asking supermarket staff questions". I have communication difficulties but he doesn't understand that.

I'm trying hard to move out into a council flat of my own, but the carer keeps saying I'll never be ready the way I am apparently going.

Does anyone have any advice or opinions?

It is highly unlikely that you can change his mind--he thinks that by having you attend loud parties, you will get used to the noise.

However, it is equally unlikely that you will get used to the noise.

Obviously, there is no middle ground.

You might see how much of a voice he has in deciding whether you get to move out or not.

This can determine your best course of action--ignore him, say you will go but never do (very NT-like), go but leave as soon as you get stressed.

Good luck!

My advice would be to find a different carer. Like one who actually cares.

Support workers in my experience often think they know what is best without understanding the complex issues. What is important here is the outcome, not the way this is achieved. No one understands better than you how to move forward. So, the outcome is independent living. There will be many ways to this. If shopping freaks you out, can you do Internet shopping? Can you get to a small local shop for fresh food, etc. etc. Going to a 'party' with people not of your choosing is something few people would want to do. Are you managing to get to university? If so, this should be enough in terms of social contact. When you are offered a flat, quiet would be an important criteria, no one should have to get used to a noisy environment. Who is overseeing your support? Do you have a social worker or mental health nurse? You need someone who can work with you to get a plan of action together that is realistic and achievable. Good luck with this.

Thanks everyone.

BTDT - the carer is not in any way knowledgeable about autism. As another person living here is going to the party, if I say I'll go, and I don't, the other person will tell him I wasn't there. So I'm going to ignore him. He has some say in me moving out (I think he needs to provide a reference).

Rascal77s - unfortunately this carer privately owns the house.

Panddora - it is very noisy in this area which has caused me multiple meltdowns. I will fight my way to independent living. I do internet shopping, but the carer keeps telling me to go to Asda (I had a severe meltdown there a while ago and nearly had security deal with me - I haven't gone there alone and without noise-cancelling headphones since). I get a government-funded taxi to and from university and I have a full-time autism support worker there. She is very helpful and is an autism specialist. My keyworker is an occupational therapist and she knows a fair bit about autism. She is helping me too. She filled in the housing application form with me and she is trying to get me into independent living without the carer getting involved too much. She put down on the form that I need to live somewhere quiet.

That sucks, especially since your carer privately owns the house (how did that come about?)

Your best bet is to leave him out of the equation as far as you can. He is obviously totally ignorant of what it means to have ASD, otherwise he would not think you can just get used to noise etc.

Such a horrible man the carer must be. If he is saying stuff like that about you, that just goes to show he lacks character, and that he has no respect for your needs.

It's kind of ironic that they say you will never live independently but yet you can somehow learn how to tolerate an over-stimulating environment like loud party. Maybe some carers make money off of keeping someone dependent, I do not know. It definitely seems like the person is not doing their job. Hope all ends well for you though, especially because you do have some people who get you.

It's not as if going to parties is required for independent living, either.

Is there someone you can take a complaint to, presuming that such a complaint would not be met with some kind of action on your carer's part?

If supported housing means loads of people around you who also have spectrum disorders then I would guess it noiser than most places (cause some are very noise tolerant). If that's a noisy enviroment that's a product of that enviroment specifically and doesn't reflect what it would be like living in your own flat or self-contained flat. Shared living is noisy yeah and people disturb you so what your carer says makes no sense (because who says you even want to go to shared living?). If you *can* go to a party then that probably is kinda good, but if you can't then you can't. So it sounds like they don't understand there are limitations to what you can teach yourself to do and that this can't be rushed. That sounds like too much pressure at once.

Maybe ask them to back off a bit and give you room to breath and let you learn more at your own pace. Maybe a certain amount of pressure is ok, just not right in your face like "Hey get out there and live your life." etc. Sounds like they don't really get you.

Yeah,is there an agency or government department through which you were assigned this carer where you could complain? You could tell them you're concerned about his reaction to your complaint and ask if they can help with this or at least stay in touch with you to make sure there aren't any new problems.

I don't think the caregiver is "discriminating" against you because of his opinions. The caregiver knows your ambitions, and is telling you that the people that he has known who have gone on to independent living AREN'T as freaked out by noise and other people as you are... AND, if you want to live independently maybe you ought to change a little bit... because the world isn't going to change to make you feel comfy.

Maybe you could ask this person to take you to some shops, and help you learn to chill around busy noisy places. It just takes practice... practice... practice.

This is mental health supported housing (I'd be seriously lucky if I got into autism supported housing with this council - in fact I bet it doesn't exist here). The supported housing network here is sh*t. I've heard of some houses where the carer's children live in the same house as the clients! Before I moved in here, I was in a place where the carer lived in and she often invited her family round and sometimes had mini-parties! Also she would often get drunk while "caring" for me and the other clients. I literally went to the library all day every day. I have no idea how I survived (I was running away on a weekly basis and I ended up in hospital a few times).

This carer has had no training on ASDs at all. He is usually insensitive like this.

The carer's wife is a bit better but she never visits.

I have a support worker who is trying to get me used to noisy places, but it's a slow process.

I am just trying my hardest to move out of here.

I had several meltdowns here before and each time the carer said I was "being stupid".

What a sick circle. The independent living is exactly how to escape the noise & people.

make an official complaint about what the staff said to the manager of the house,its usualy always management@nameofcompanyhere.etc ,if are bothered about making the complaint;ask keyworker to do it instead or get a advocacy service involved, MIND do it but they might not understand the autism side so well, and NAS do it but they may not understand the mental health side as well as MIND do.
they can support with telling that staff to fcuk off in a profesional way,companies tend to listen to profesionals more.
every organisation;regardless of the condition now support service users under a PCP; http://en.wikipedia.org/wiki/Person-centred_planning
this means every service user has their likes,dislikes,good things about them,life etc planned exactly as it shoud be;they may have helped make it if they have the capacity,it shoud all be on paper.
so things like 'unable to cope with noise','hates discos' etc shoud be on there and those staff shoud be respecting it,ask the keyworker have got if woud be able to make a PCP with him/her.


supported living is independant living anyway,it is to help independant people live a life with as much of their input as possible- with support, they shoud not be saying horrible things like that to anyone in this day and age.

Depends how he said it and ultimately if he meant to cause you stress... doubtful, but people can be a***holes.