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Really struggling

Sakura

Sorry for the ramble in advance. I've felt desperate for quite a while now with the way my life is now. 

I got a diagnosis of Asperger's while I was still at school and I was quite well supported until I was 18. After that I feel like I was abandoned. (ASD doesn't disappear when you turn 18!)

Since then things have generally been awful. I've had a few admissions to psych hospitals, stayed in bad supported living for a while and ended up having to move out to rented accommodation. 

I feel so completely isolated and unsupported. There's nobody I could call my friend any more and my family are no help (just another source of stress). I have a social worker who is incredibly unhelpful and I'm not sure if she's aware I exist. When I have seen her I end up feeling worse afterwards. I have a psychiatrist who wants to discharge me soon and sees me for about 10 minutes every three or four months. I started a different antidepressant a few weeks ago and aside from the physical side effects (including feeling like my heart's beating really fast sometimes) I started feeling intensely suicidal for a while. That seems to have mostly worn off though. 

Everything is so, so stressful. My partner's had a benefits application for over a year now and I have to be included in the application. We're also on a council housing list but meanwhile staying in a rental with a terrible landlord and loads of problems. It looks like we won't get anywhere to stay before the tenancy is up and I can't think about having to move to another awful rental place without feeling panic and dread. I find it difficult to leave the house. And the house is a tip. 

I can't see much hope in the future. I don't think I can go on like this with no help, no support, massive financial worry and having to move from one terrible flat to the next.

I've tried to phone different charities etc. for advice but that in itself is incredibly difficult. There's a local charity here that could offer some kind of support but I'm on a waiting list.

I really don't know what to do and I feel like I might break soon.

Does anyone have any suggestions? 

  • just to let you know you arent the only one with a rubbish social worker and no support etc.

    I am in a simular position to you just a bit further down the line. My social worker sucks and cant even update a care report which is 3 years out of date and doesnt even say i have ASD. I see the psych like you every 3 months for about 10 mins where she refuses to discuss anything with me. I feel really bad after seeing either of them so i am thinking of taking myself out of the system completely as i dont benifit.

    There is little support for anyone after 18 regardless of your disability.

    I lost my job and my accomodation what was tied to it in 2013 and was homeless. There are some kind people within the council and you count as a vunerable person which should up your band when waiting for council housing. Have you told the council about your disabilities? and have you been in an physically spoken to someone about potentially being homeless. I found that the homeless housing although they cant do anything until the actually date of being homeless are actually keen to get involved and help you find accommodation before you are actually homeless and become their problem.

    Have you thought of getting an advocate. Someone to speak up for you on your behalf and put across your story in the words you would if you were able to? They are free and really helpful in making someone listen to you. I have had them come and visit me at home if i was unable to go out and meet them.

  • Former Member
    Former Member

    Actually I'm really pleased to hear from Arkx8 that there are good services out there and that people can get the services that they need. The main stiory I hear on this forum is that the services are really not very good and I hear more complaints than anything else.

    I have a couple of comments to make and questions to ask. There are no right answers to my questions but it is more about getting people to think.

    Do you consider yourselves to have a disorder? There are a lot of people on the forum who hate this label and prefer to use the word condition and some prefer not to think of it as anything else than a difference. What are your thoughts on this? 

    What sort of, and how much, support do you each need? Having autism doesn't necessarily mean that you need a lot of support, it is a life long condition and some autistic people can live with it without support. I'm very well aware of the variation of situations and variations in impacts that autism can have but I just want to see whether you think this is possible or conceivable from where you are standing. I would again be really interested to hear Arkx6's point of view as well as Sakura's response.

  • Im very sory you are suffering the way you are. Life with ASD can be a handful.

    Here's a few things to try:

    1)find out if there are any disability advice centres near you that can effectively sign post you to ressources That might be helpful. As from what you describe people are nit effectively signposting you.

    2)Goto social services and find out if you are eligible for financial support for courses to help learn skills to deal with ASD and other needed skills that would make life easier for you. Or find out what you need ti be eligible for support.

    3)Find out about any local NAS centres near you that can provide informed advice on what you can do to pursue help etc. eg what funding you can access etc

    4)if you find these things difficult to do for whatever reason look into getting an advocate who can chase these things for you.

    me (mostly my mum and support) doing these things has resulted in me being in a pretty good situation in terms of good supported accomodation and financially. 

    There is help out there...