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Housing rant

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Hi all,

I rarely post here anymore since most of the people on here are parents of

autistics rather than adults, but I need to vent somewhere where people

understand, if only second-hand, about autistics with more complex care needs. I

am not asking for advice since I am likely the only list member in my country,

but I am hoping you will listen and be supportive.

Well, for those who don't know me anymore, I am 25-years-old and diagnosed

autistic. My IQ is above-average, but my functioning is not. I am verbal,

although I sometimes lose the ability to speak or can only repeat phrases. I can

have meltdowns wiht aggression and self-injury, although these are less extreme

since going on Abilify and Celexa. In addition to autistic, I am blind and have

several mental health conditions related to childhood trauma. I reside in a

psychiatric hospital and have since 2007.

The problem is I and my care team can't find housing that is suitable for my

needs. There are so-called workhomes in the Netherlands, which are for normal-IQ

autistics with complex care needs, but I was accepted into one and then when I

went to try it out for a while, there turned out to be too little support for my

needs. The point of a workhome is that you can do day activities at the same

place where you live, so your day is very structured, but the staff said I

couldn't do day activities because I'm blind and there is too little staff to

help me individually. So the whole point of the place is lost. I don't know if

other workhomes in the country have more staffing. The workhome I was accepted

to was to the south of where I now live, and my husband lives two hours north

from me now, so I didn't feel excited about moving to that specific workhome

anyway, so maybe we can find one that is closer to wher emy husband lives. I've

also considered agencies for people with intellectual disabilities, but I'm not

sure I'll be accepted into one of those because as I said I have a high IQ.

Today I spoke to my psychologist and she said that it's unlikely there is any

place outside of psychiatric institutions where there is more staff than where I

currently live. Background: at my current ward, I hardly cope at all. Now I

don't mind liviing in a psychiatric institution, but well. To make matters

worse, my psychologist inquired as to why I can't cope with less staff, and she

concluded it's all my trauma-related anxiety and this needs to be treated. Well,

whatever. It's lack of structure, overload, problems organizing my day, and that

leads to anxiety. I guess that's autism. On top of it, no-one seems to care that

I'm blind. I am supposed to do household activities, run errands, etc. on my

own, while I can't. The staff here know I currently can't and help me, but

constantly seem to say I can learn these things at a new place. While I'm

overwhelmed now already.

We used to get support from something called the center for consultation and

expertise (CCE), but this consultant only evaluated me briefly for autism and

trauma-related issues and the case manager disappeared before even having met

me. Now we might involve them again, as apparently it was my staff who kicked

them out when they offered to help us find placement.

At this point, I'm so desperate. I have suicidal thoughts at times and am

extremely sad and angry. I am not bad enough to be put on a secure ward, but I

almost wish I was.

I apologize for having vented so much. Thanks if you've read till here.

Astrid

astrid@...

http://www.astridvanwoerkom.com/

http://astridvanwoerkom.wordpress.com/

http://astridetal.wordpress.com/

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