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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

Parents
  • Former Member
    Former Member

    Yes, the mental health side of the NHS is woefully underfunded but that does not determine whether one gets diagnosed with a condition. The underfunding causes delays in diagnosis and it causes shortages in the resources required to help people with problems but I have seen no evidence of them erring one way in their diagnosis decision because of funding.

    Diagnosis depends on someone having enough of a problem to require intervention. If you are managing fairly well (this is a very grey area) then you do not need intervention and you should not get a diagnosis. If you have consequential mental health issues, issues holding down jobs and getting into work or staying employed or issues keeping out of prison (this is not an exclusive list!) then you need intervention and you should get a diagnosis.

    Lots of people could benefit from greater insight about themselves and have scope to making more of their lives - the self-help section of a bookshop will always be busy and bursting with offerings in that area. The NHS doesn't cater for those people but instead concentrates on people who need intervention. People with autistic traits who manage their lives reasonably well (this is not a high standard - think of the average character on EastEnders perhaps) do not fall into this category. I'm aware that I am at the very high functioning end of the spectrum and I only got into the system because of major fallouts at work (physical objects and insults were getting hurled around the office) that lead me into dark mental places and a progressive failure to cope with work etc. My contact with other diagnosed people through the local autism service tells me that most people in the system with a diagnosis are actually right at the margins of society, they are really not coping with life at all well and are in dire need of help. It seems to me that the right people are getting diagnosed and that those who would benefit from some greater insight might well be able to look after themselves at their own expense. Now, I am absolutely unable to make a judgement about whether Atypical or LMY are in greater or lesser need than myself but I think it is clear that diagnosis has to be judged based on the individuals need for intervention rather than on them having the traits of autism.

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  • Former Member
    Former Member

    Yes, the mental health side of the NHS is woefully underfunded but that does not determine whether one gets diagnosed with a condition. The underfunding causes delays in diagnosis and it causes shortages in the resources required to help people with problems but I have seen no evidence of them erring one way in their diagnosis decision because of funding.

    Diagnosis depends on someone having enough of a problem to require intervention. If you are managing fairly well (this is a very grey area) then you do not need intervention and you should not get a diagnosis. If you have consequential mental health issues, issues holding down jobs and getting into work or staying employed or issues keeping out of prison (this is not an exclusive list!) then you need intervention and you should get a diagnosis.

    Lots of people could benefit from greater insight about themselves and have scope to making more of their lives - the self-help section of a bookshop will always be busy and bursting with offerings in that area. The NHS doesn't cater for those people but instead concentrates on people who need intervention. People with autistic traits who manage their lives reasonably well (this is not a high standard - think of the average character on EastEnders perhaps) do not fall into this category. I'm aware that I am at the very high functioning end of the spectrum and I only got into the system because of major fallouts at work (physical objects and insults were getting hurled around the office) that lead me into dark mental places and a progressive failure to cope with work etc. My contact with other diagnosed people through the local autism service tells me that most people in the system with a diagnosis are actually right at the margins of society, they are really not coping with life at all well and are in dire need of help. It seems to me that the right people are getting diagnosed and that those who would benefit from some greater insight might well be able to look after themselves at their own expense. Now, I am absolutely unable to make a judgement about whether Atypical or LMY are in greater or lesser need than myself but I think it is clear that diagnosis has to be judged based on the individuals need for intervention rather than on them having the traits of autism.

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