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Not Autisitic enough

Al 1

Hi Everyone

i have just been for an assessment at the Nhs centre in Sheffield. I comcluded a session of 2 hours of assessment mainly verbally asking me questions and at the end of it I was informed that had I been assessed as a child then I would of got an ADOs test. It was explained that whilst I have many Autistic traits then this is not enough to warrant an ADOS test, which feels a bit like telling someone with 1 leg that can't be provided with a wheelchair unless they have no legs.

i went because I had an idea after my son was diagnosed and I also think my dad has had it for years, given I now know quite a lot about the condition. I racked my brain back to my childhood and now present day and I am clearly Autistic, but clearly the view is that if you are not Autistic enough then basically you can't get the same support Which is very fustrating for me. I was further told that basically I had adapted through learnt behaviour and that I found strategies and routines in my life that suit my situation and by default I have indirectly protected myself in some ways. When I basically explainer at the end  of how I could be defined with Aufistic traits, yet effectively not be Autistic enough it was positioned with me that 'The reason I taken this literal view was based on my Austism'.

So basically, I am just sharing this with this network to look for other people's experience where they may feel let down by the process to gain an ADOS test and the relevant support.

Thanks for listening and appreciate any feedback.

Al

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  • I take your point recombinantsocks, and it's all very well Atypical being told she is functioning well enough not to warrant some form of help, but this to me, seems a cop-out because, as I said, you cannot be slightly pregnant, you are or you are not and to be marginalised like this seems to be sending the wrong message to her. She is clearly not too happy with her experience else why is she considering consulting a private consultant? If I was told what she was told I would start to question whether I really did have a spectrum disorder and perhaps even tell myself I might even be exaggerating the whole thing. It's right that people who are managing their condition pretty well should not be receiving help before others who are really suffering and need help but does that then mean they are not entitled to some form of therapy from a trained careworker? 

    I'm not too impressed by the plethora of self-help books out nowadays promising this and that because they don't usually work and really one needs the help of a trained professional within a structured regimen to stand a reasonable chance of real progress. As you know, Aspergers does not simply go away and therefore will not clear up and perhaps may even deteriorate over time, I don't know, so to tell someone they basically have to get on with it is just not good enough in my view. And the problem is that if Atypical found her problems getting worse at some point in the future she might well not feel she would be entitled to seek help from the NHS after being rejected in the first case. I still think that underfunding must play a part in choosing who gets a proper diagnosis and who doesn't and I feel what the NHS has done here is to move the goalposts. All this, to me, is just one more indication how the NHS is unable to cope and is pushing people to use private services, i.e, the creeping tendency to privatisation.

    I think what Atypical really seeks is an official diagnosis of her condition so that she can then move on and manage her life. At the moment she is not very sure about her difficulties, it seems to me, and without being told she is definately within the autism spectrum will not quite know how to manage her life in the future.

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  • I take your point recombinantsocks, and it's all very well Atypical being told she is functioning well enough not to warrant some form of help, but this to me, seems a cop-out because, as I said, you cannot be slightly pregnant, you are or you are not and to be marginalised like this seems to be sending the wrong message to her. She is clearly not too happy with her experience else why is she considering consulting a private consultant? If I was told what she was told I would start to question whether I really did have a spectrum disorder and perhaps even tell myself I might even be exaggerating the whole thing. It's right that people who are managing their condition pretty well should not be receiving help before others who are really suffering and need help but does that then mean they are not entitled to some form of therapy from a trained careworker? 

    I'm not too impressed by the plethora of self-help books out nowadays promising this and that because they don't usually work and really one needs the help of a trained professional within a structured regimen to stand a reasonable chance of real progress. As you know, Aspergers does not simply go away and therefore will not clear up and perhaps may even deteriorate over time, I don't know, so to tell someone they basically have to get on with it is just not good enough in my view. And the problem is that if Atypical found her problems getting worse at some point in the future she might well not feel she would be entitled to seek help from the NHS after being rejected in the first case. I still think that underfunding must play a part in choosing who gets a proper diagnosis and who doesn't and I feel what the NHS has done here is to move the goalposts. All this, to me, is just one more indication how the NHS is unable to cope and is pushing people to use private services, i.e, the creeping tendency to privatisation.

    I think what Atypical really seeks is an official diagnosis of her condition so that she can then move on and manage her life. At the moment she is not very sure about her difficulties, it seems to me, and without being told she is definately within the autism spectrum will not quite know how to manage her life in the future.

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