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What support is there for adults with Asperger's?

Guineapigged

I was recently told I may have Asperger's and am awaiting an assessment (Dr said he would refer me to Sheffield?)

In light of this I am going to be discharged from the CMHT within the next 6 months. This means I will no longer have access to services such as respite. I asked my keyworker if there was another service they would pass me onto but he didn't know. It doesn't seem likely.

Are there any official services for Asperger's or do they basically just leave you to it? I'm feeling a bit abandoned and bewildered.

  • The Autism Act doesn't seem to have much clout though. Since NAS asked us to chase up the person responsible for adult social services in our local authorities, I've chased up several times to see what is happening.

    On the Council's website the "Autistic Spectrum Team" only covers children's services, and the age range stops at 19. There's nothing at all about adults.

    When I pursue the matter, I get a "we're looking into it" email, and several weeks later someone comes back to me to say it is covered under Adult Social Care, but nothing specific has been put on the web yet.

    And still nothing whatsoever about adult autism/asperger's syndrome appears anywhere on their website.

    Until the Autism Act is more to be feared for its bite than its (rather feeble) bark, there's going to be little change, I fear.

  • This sounds like bad practise to me. I wonder if the NAS helpline could help.  It seems to me seriously against the spirit of the autism act which is trying to get health authorities to address autism appropriately rather than write of those of us with the condition.  There is a serious lack of services for people on the spectrum (you might want to try and join or start a peer support group) but IMO you should not be being discharged from existing services because of an ASC. However the gap between what should happen and what does, is deep and wide.

  • If they've referred you to Sheffield perhaps you are able to take advantage of the autism centre at Sheffield Hallam University (in the Arundel Building on Charles Street).  They claim to be signed up to the European Charter for Persons with Autism, which, if they do uphold it, covers a lot of your concerns.

    Although a research centre which runs workshops and conferences and publishes books, having been at one of their conferences they do appear to involve and support local people with autism.

    In the 70s and 80s people used to get treated as if schizophrenic for having autistic spectrum traits and put on the wrong medication. So if they are taking you off schizophrenic medications and redirecting you to autism support services, and that diagnosis proves appropriate you should be better off, at least in the sense of getting the right treatment.

    However I can understand your anxieties about whether the support will amount to much, seeing as it seems to be a bit of a postcode lottery. But it might be productive to contact the Autism Centre at Sheffield Hallam in the meantime, for advice, and also use the resources on the NAS website.

    Good luck.

  • Hope said:

    I am surprised by this. Before I got diagnosed I was receiving CBT for OCD and anxiety. The CBT was not working because it did not address my underlying AS. Consequently, when I got referred to the NHS Autism team, I stopped receiving CBT, but in the interim I was given a mental health support worker who I saw for an hour a week in order to help me cope while I was waiting for an assessment. The mental health team kept me on their register, which I am still on because I am receiving ongoing support from the CMHT in the form of social worker appointments and psychiatric check-ups, even though my main support is now provided through the local Autistic Society.

    I would question your CMHT on this because they should provide you with some support while you are waiting for an assessment. Do you have any mental health problems, like anxiety or depression?

    Hi, thank you for the response.

    I have been with the early intervention psychosis team for 2 years now but have never shown signs of psychosis and my official diagnosis is dysthymia.

    Since it's now suspected Asperger's rather than a mental illness, my keyworker recommended I come off my medication and wind down the level of support. I got them impression of "you're not ill after all - it's just Asperger's" and therefore I don't need to be involved with medical services like a CMHT anymore.

    I feel like everybody expects me to be happy because I'm "cured" now - or, rather, I'm "cleared" of any serious mental illness like schizophrenia. But in reality I'm still having all the problems I was 2 years ago, only now I don't have the "right" diagnosis in order to access services that have been useful to me like respite, crisis team etc.

  • I am surprised by this. Before I got diagnosed I was receiving CBT for OCD and anxiety. The CBT was not working because it did not address my underlying AS. Consequently, when I got referred to the NHS Autism team, I stopped receiving CBT, but in the interim I was given a mental health support worker who I saw for an hour a week in order to help me cope while I was waiting for an assessment. The mental health team kept me on their register, which I am still on because I am receiving ongoing support from the CMHT in the form of social worker appointments and psychiatric check-ups, even though my main support is now provided through the local Autistic Society.

    I would question your CMHT on this because they should provide you with some support while you are waiting for an assessment. Do you have any mental health problems, like anxiety or depression?