Where in Great Britain offers local N.H.S. support for adults?

Hello,

I am wondering if anyone can help me decide if there is a better place to live for receiving medical support as an adult with autism. Does anyone have good experiences of this where they live?
I was diagnosed fifteen years ago when I ended up in a difficult situation.  Although I had always had difficulties, including a very big problem with social anxiety, I had been left to myself.  Maybe it is just because autism was not understood when I was growing up.  Including by myself, so even when I started asking for help in my twenties I did not know what to ask for or how to ask.  But I ended up in a situation where I had a job and a partner by sheer luck, as I was very passive in both things happening to me.
But after a few years the job ended, a month later the relationship ended, and then I discovered that autism explained my problems better than anything else ever had.  Being unable to cope on my own and unable to work, I sought a diagnosis.  Both because I needed it so I could get benefits, and because I wanted to get help so I could have a proper life.  Aside from not working, I struggle doing many leisure activities on my own, and am completely isolated even though I do not like being alone.
Unfortunately despite trying to the best of my abilities, which are not that great, I could not get any help.  I ended up with a G.P. who seemed to make a lot of effort for me, but it similarly lead nowhere.  But then a few years ago from nowhere I was referred to a specialist adult autism C.B.T. therapist.  That actually uncovered more problems, and when the therapist applied for funding to continue it was denied by the local N.H.S. Clinical Commissioning Group.  So it essentially left things worse than before it started.  And even since then my G.P. has said there is no help available they can access on the N.H.S.
Due to a chain of events, last year I was referred to the local mental health network, which acts as the access point to most health and support services provided by the N.H.S. and council.  I had been there before without any success so already had low expectations.  But in repeating the same story about myself, the sort of things I have just said here, I lost any hope I had left.  I felt like everything I was saying because I had said it before and I knew from experience and the way I would be interrupted that the person I was talking to was not paying any attention to me.
The end result was being referred to a support group that would be unhelpful to me, both because it could not address my problems and that the social anxiety would be very distressful.  But I agreed to go to look around as it was all that was offered.  When I again told my story to a person there, they knew it was unsuitable for me.  I wrote to my G.P. explaining this chain of events and did not even get a reply.  I think the G.P. I used to see has left the practice, they have been very unhelpful this year.  They told me I need to shield, but would not put me on the list to get supermarket support so I could not get any shopping for the first month until I emailed my local M.P. asking for their help.
But I have lived in the same flat since just before being diagnosed, have no ties to the area, and have long felt uncomfortable living where I do.  So I was thinking that if I could move I could go somewhere where I would be able to receive help from the local N.H.S., as I have accepted there is no chance of getting any help here.  I do know that moving would be difficult by having to find somewhere that would rent to someone on benefits, and very stressful to do and somewhat expensive.  But I am very unhappy here and so it would be my only option.
Any advice people can give on their area or other places they are aware of will be very welcome.
Thank you.
Parents
  • Hello, Somebody, and welcome to the forums.

    I'm afraid this is a common story. Despite the government having an Autism Act, the UK government are putting very few resources into support for autistic adults who live independently. It's almost like autism is a dead-end diagnosis. The vast majority of mental health services have no understanding of autism and in my experience can be actively harmful. You're extremely unlikely to find an autism-specialist psychologist for example, and many therapists make neurotypical assumptions which are both mistaken and can make you feel deficient. You do well if you can find someone who just takes you as you are and acknowledges that they don't understand completely. (That doesn't necessarily mean mental health services are of no value at all in a crisis.)

    It seems all the diagnosis gives you is an entitlement to reasonable adjustments under the Equality Act as regards employment or services; if you're in work you can also claim Access to Work to pay for some help, such as mentoring. My thoughts would be: does your local authority have an autism social worker? It's just possible they may be able to help with practical problems and also be linked to occupational therapy services. Another option is to try to push for services at a policy level: have you tried contacting the local Healthwatch? If you can also find other autistic adults locally, there is power in numbers and you are helping each other: you wouldn't necessarily need to meet face-to-face, if that's what made the support group useless.

    Well done on getting the food delivery sorted and keep safe.

Reply
  • Hello, Somebody, and welcome to the forums.

    I'm afraid this is a common story. Despite the government having an Autism Act, the UK government are putting very few resources into support for autistic adults who live independently. It's almost like autism is a dead-end diagnosis. The vast majority of mental health services have no understanding of autism and in my experience can be actively harmful. You're extremely unlikely to find an autism-specialist psychologist for example, and many therapists make neurotypical assumptions which are both mistaken and can make you feel deficient. You do well if you can find someone who just takes you as you are and acknowledges that they don't understand completely. (That doesn't necessarily mean mental health services are of no value at all in a crisis.)

    It seems all the diagnosis gives you is an entitlement to reasonable adjustments under the Equality Act as regards employment or services; if you're in work you can also claim Access to Work to pay for some help, such as mentoring. My thoughts would be: does your local authority have an autism social worker? It's just possible they may be able to help with practical problems and also be linked to occupational therapy services. Another option is to try to push for services at a policy level: have you tried contacting the local Healthwatch? If you can also find other autistic adults locally, there is power in numbers and you are helping each other: you wouldn't necessarily need to meet face-to-face, if that's what made the support group useless.

    Well done on getting the food delivery sorted and keep safe.

Children
  • I think the problem is I do not technically have any needs, in the sense I can take care of myself to any kind of minimum threshold sense.

    Not having being diagnosed as a child I never got any help to learn how to function socially.  I never know what to say to people, my mind is just blank and I have nothin to say.  The times when I do have something to say I never know when I am supposed to speak.  I am very socially phobic so tend to avoid situations, as I go through a lot of anxiety leading up to them and usually take several days to recover after.

    I am a little bit agoraphobic and so never used to do supermarket shopping online, as doing it in person gave me a reason to go out else the longer I stay indoors the more difficult it would be to go out.  Although I started riding a motorcycle, which is the only thing that helps keep my mind clear, so I did eventually gain another reason.

    But having to rely on shopping this way has taught me I do not like online supermarkets anyway, not only are the ranges smaller than my local supermarkets but there is no structure to it like there is walking up and down the aisles.  They are also the easiest shops for me as I can be left alone, smaller shops are a lot more pressure.

    I am not terrified of the moment that shielding will end because it will mean having to deal with other people.  I also have some medical problems that probably are too serious to wait until then, but I am more afraid of having to talk on the phone, having to stand up for myself (I do not cope well with creating or being in situations where there may be disagreement), and then having to go out.

    There is a specific reason why I am afraid, but it is not technically due to autism so I will only explain that if anyone wants me to.

    Basically I would say the help I need is being taught how to be a person and interact with other people.  I also struggle with motivation but I think the former will fix that.  The brief time I was in a relationship I functioned a lot better.  Probably in part because they could handle a lot of the social interaction for me, but they made me happy (which I had never been before or since) and they also gave me a purpose.

    So I have already been rejected by social workers and the community mental health service as I do not fit within the specific areas that they work.  So it seems something specialist is what I need.  I find it very strange that the various medical service will not allow me to kill myself, yet will not do anything to help me to live.

    Incidentally, last year I had to do another work capability assessment, and despite the reputation of them, the person I spoke to appeared to understand my situation better than anyone else I had spoken to.  They even told me how some things I thought not relevant were affecting me in that context.