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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

    Hi Atypical,

    I'm really not sure whether to say I am sorry that you didn't get a diagnosis - if they have judged it correctly then this means that you don't have enough problems, arising from the traits, to need treatment i.e. this is good news! I think you should absolutely continue to post here and feel welcome and at home, if you have successfully developed enough coping strategies and those strategies give you more benefit than stress then you are well placed to help nudge other people in the right direction.

    Pixiefox, very reasonably, raises the question of not wanting a disabled label. I think that there is stigma and prejudice that applies to this label even now. The "does he take sugar" attitude needs to be unpicked, dismantled and buried. One of the problems with it is that it used to apply only to people who were severely and obviously disabled. Disability is a spectrum that goes from the people in a vegetative state to people who actually just need a hand up to enable them to function effectively and happily in society. I am trying to make myself comfortable with the disabled label as I am "autistic enough" to get a diagnosis of autism and therefore am able to claim protection from the Equality Act. I do need a hand up (i.e. Reasonable adjustments to manage better with work and social life) and I do need treatment/advice etc to help me work how to deal with being on the spectrum. I don't need PIP or anything like that but PIP is (correctly) awarded on actual need rather than on whether you have the autism label. Having a disability doesn't mean that the overall net worth of yourself is negative, it just means that you have one problem but you are still free to have many assets.

    Although I am "autistic enough" I don't really think there is any difference between me and Atypical and other posters on the thread who have been judged to not qualify for this "privilege" of diagnosis. I am male (a disability in itself in some minds!) and I suspect that the impact of autism is moderated by a bundle of other attributes that allow many people to have straightforward and unchaotic lives with the traits whereas others have traumatic and chaotic existences. Some people will fall into the grey bit between these extremes and it is hard to work out whether one is far enough along the scales to tip it in favour of diagnosis.

Reply
  • Former Member
    Former Member

    Hi Atypical,

    I'm really not sure whether to say I am sorry that you didn't get a diagnosis - if they have judged it correctly then this means that you don't have enough problems, arising from the traits, to need treatment i.e. this is good news! I think you should absolutely continue to post here and feel welcome and at home, if you have successfully developed enough coping strategies and those strategies give you more benefit than stress then you are well placed to help nudge other people in the right direction.

    Pixiefox, very reasonably, raises the question of not wanting a disabled label. I think that there is stigma and prejudice that applies to this label even now. The "does he take sugar" attitude needs to be unpicked, dismantled and buried. One of the problems with it is that it used to apply only to people who were severely and obviously disabled. Disability is a spectrum that goes from the people in a vegetative state to people who actually just need a hand up to enable them to function effectively and happily in society. I am trying to make myself comfortable with the disabled label as I am "autistic enough" to get a diagnosis of autism and therefore am able to claim protection from the Equality Act. I do need a hand up (i.e. Reasonable adjustments to manage better with work and social life) and I do need treatment/advice etc to help me work how to deal with being on the spectrum. I don't need PIP or anything like that but PIP is (correctly) awarded on actual need rather than on whether you have the autism label. Having a disability doesn't mean that the overall net worth of yourself is negative, it just means that you have one problem but you are still free to have many assets.

    Although I am "autistic enough" I don't really think there is any difference between me and Atypical and other posters on the thread who have been judged to not qualify for this "privilege" of diagnosis. I am male (a disability in itself in some minds!) and I suspect that the impact of autism is moderated by a bundle of other attributes that allow many people to have straightforward and unchaotic lives with the traits whereas others have traumatic and chaotic existences. Some people will fall into the grey bit between these extremes and it is hard to work out whether one is far enough along the scales to tip it in favour of diagnosis.

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