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SteelMaiden
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07 Sep 2012, 2:35 am

I live in supported housing and the carers looking after this place have some clue about mental health, but hardly any knowledge about autism. I find it odd that they didn't get any training when I first came here over two years ago.

When I tell them about a bad autism-related experience I've had, they either say "oh it's the weather, it makes a lot of people feel like that" (they always use the weather excuse), or, if I tell them about my sensory overload, they say "you have to learn how to deal with noise" (well if I could do that, I would have done it so far, I'm nearly 23!).

They also say "that's normal, everyone feels like that" or "there's nothing wrong with you, what are you talking about?"

I gave them the Tony Attwood book on Asperger's several months ago but it has hardly helped, despite the fact that they said they read most of it (did they lie?).

I have, on many occasions, considered moving out and living with my AS friend, and getting weekly/daily support from the National Autistic Society, as opposed to living under a carer scheme, but everyone's saying that I'm not ready for independent living so I'm stuck here.

I am really fed up. My mental illness is mild right now, my psych and I found a good meds combination for me. But my Asperger's is severe, especially in the sensory/anxiety/social understanding areas.

The wife carer is accompanying me to a hospital dentist appointment today and I'm scared she won't understand my sensory issues. We're going to travel on the Underground and I need to wear my dark glasses and my earplugs, I'm worried she'll comment adversely on them.

What can I do about this long-standing problem?


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miss-understood
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07 Sep 2012, 6:24 am

Sometimes people say things like "we all feel like that" or "it's no big deal" because they are trying to make you feel better about your problems. Sometimes they say things like that because they are insensitive, or jerks. I'm assuming if these people are your carers that they have some compassion for you and they are probably saying it to try to take your mind off things like that, obviously that's not helping.
If I was in your situation, i think I'd write them a letter. Then you can put into words how those comments make you feel, tell them they are making you feel unsupported. If you had a broken leg they wouldn't tell you to just do without your crutches or that "everyone's legs feel a bit breaky y'know". Tell them in a respectful way that it is hurtful for them to not understand this. If they say you have to learn to deal with it, tell them you're trying- that's what the earplugs and glasses are for, to try and deal with it. Doesn't mean you can't ever talk about how stressful or painful it is for you. Good luck, hope you get some more input.



PTSmorrow
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07 Sep 2012, 9:46 am

I've made some similar experiences, one was even with a therapist and you would really expect that they know what they're doing, but all she did was telling me that her other patients were so much worse off than i. They were even suicidal, so i asked her whether she expected me to commit a suicide attempt in order to be taken seriously.

This prattling makes me sick and it's so stupid like everyone telling elderly people (i'm 53 so i've heard this crap several times now,) "oh, that's just due to age, you know, with time comes decline ... " and i regularly respond with an angry outburst because those so--called health care professionals are nothing but lazy bums who consider people as stupid. We should have a law against such ignorant utterances, after all they're getting paid to do their job, it's not as though they would do you a favor.

Don't know whether the details of your situation allow for this, but i would consider complaining to their superiors about it. If they can't handle ASD and respond to your needs, they should either receive appropriate instruction or get you a specialist.



Callista
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07 Sep 2012, 10:15 am

Quote:
I'm assuming if these people are your carers that they have some compassion for you and they are probably saying it to try to take your mind off things like that, obviously that's not helping.
Just because somebody works as a caretaker for people with disabilities doesn't mean they are compassionate. These are poorly paid, often overworked people; for many of them it is just a job. That doesn't mean necessarily that they won't do their jobs decently, but it can.

Try to get through to them if you can, though. If they won't read books, will they read a pamphlet? A letter? Are there some who understand more than others, and whom you could use as "interpreters"?

You mentioned the NAS; perhaps they could help by providing some materials, calling your supported-living people and trying to help them understand. It's worth asking anyway.

BTW, if they comment on your glasses and earplugs, tell them why you wear them. If they still comment, tell them it's none of their business how normal you look. You have the right to wear what you want, barring indecent or dangerous things; and if that includes glasses and earplugs, then they shouldn't be butting in.


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SteelMaiden
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08 Sep 2012, 2:31 am

Thank you all.

I will talk to my NAS support worker about this.

Writing things down for them is also a good idea.

I have tried so hard to educate them about autism. The female carer understands a bit, but the male carer is resistant.

For some reason they didn't visit at all yesterday...?

I managed to wear my dark glasses and earplugs yesterday and the carer just ignored it thankfully.


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miss-understood
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08 Sep 2012, 5:51 am

Callista wrote:
Quote:
I'm assuming if these people are your carers that they have some compassion for you and they are probably saying it to try to take your mind off things like that, obviously that's not helping.
Just because somebody works as a caretaker for people with disabilities doesn't mean they are compassionate. These are poorly paid, often overworked people; for many of them it is just a job. That doesn't mean necessarily that they won't do their jobs decently, but it can.


Yeah, I know.
Like I said (not very clearly), it was an assumption on my part (and specific for this situation) and it was with that assumption that I gave my advice. If i thought they were being, in my opinion, deliberately hurtful my advice would have been to "lodge complaints wherever you can and get out of the house asap". To me, it sounded like they weren't trying to be mean, even if those comments were offensive. If someone is trying to be mean, there is no need to tell them they are hurting your feelings, they already know. Whereas, if they are saying things, really without thinking (or even misguidedly thinking they were cheering you up)- and those things are offending you then it's more important to let them know. We all say stupid things sometimes... if they keep doing it, even after you've told them how crap it makes you feel then they deserve official complaints/ further action.
Hate how it makes sense in my head and loses it on the way to the keyboard :oops:

@ Steel Maiden, glad the carer kept any opinions re: your glasses & earplugs, to herself.



SteelMaiden
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08 Sep 2012, 1:09 pm

miss-understood wrote:
@ Steel Maiden, glad the carer kept any opinions re: your glasses & earplugs, to herself.


Thanks.


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MeshGearFox
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08 Sep 2012, 7:38 pm

Why are you so concerned about what others think? As Callista said, health care workers are not paid to care. In fact, it could even make their job more difficult if they become too emotional with their patients. They must develop some barrier to keep the emotional toll of taking care of others to a minimum. I somewhat agree when they say "you have to deal with the noise", but you are doing just that with earplugs. (I recently developed tinnitus so I do not say that lightly. I hate taking meds and listening to white noise, but whatever works.) I often overemphasize experiences that others completely dismiss. They're downplaying things for your benefit, and maybe it's not so bad if you step back a bit from it.

If moving in with your friend would make you happier and you are confident about being more independent, you can set down the reasons and make a plan. I don't expect anyone to understand my autism. I have been astounded and a little hurt by some of the comments or reactions of friends/relatives when I discuss my difficulties. I wish I had a better safety net and someone helping me. I blame my tinnitus on not seeking proper care when I had the chance, and now I have nothing but regrets. I was too busy having meltdowns from my illness and making bad decisions with no one around to stop me. I didn't even think to call someone for advice. I now have a better plan of action on my refrigerator, but it still might not stop my self destructive behavior, which has gone on for years. Don't romanticize living on your own with autism because I can tell you from years of experience it is tough and doesn't get any easier.



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02 Aug 2015, 9:33 am

These people are not a good fit for you. If you can't get through to them, you need to contact the NAS to tell them these people are ignorant about Aspergers, so they aren't able to offer you the help you need, and they don't appear interested in getting the knowledge and training needed to help you out, so you need a different placement.


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