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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

  • Hi Al

    I was offered a referral by a GP and turned it down, as after reading a lot about it and watching that programme with Simon Baron-cohen, I came to the conclusion that it was highly like that I would be deemed "not Autistic enough"  for a diagnosis. 

    I understand your frustration. We like black and white definitions - either we're on the autism spectrum or we're not. Being refused a formal diagnosis can make some people feel they're being treated as if they're a liar, or a fake.  But they're not. some people with autism can lie on occasion but in a situation where it's important to get a correct and true result, I don't believe anyone on the spectrum would lie.

    The problem is that the NHS are looking for a disability, but although some people with autism have a disability too, I don't see autism itself as being disabled - it's better described as being "differently abled" and brings abilities and Strengths as well as difficulties.

    Keep reading and posting questions and sharing your experiences. I believe it's the best way to help ourselves.

    All the best 

Reply

  • Hi Al

    I was offered a referral by a GP and turned it down, as after reading a lot about it and watching that programme with Simon Baron-cohen, I came to the conclusion that it was highly like that I would be deemed "not Autistic enough"  for a diagnosis. 

    I understand your frustration. We like black and white definitions - either we're on the autism spectrum or we're not. Being refused a formal diagnosis can make some people feel they're being treated as if they're a liar, or a fake.  But they're not. some people with autism can lie on occasion but in a situation where it's important to get a correct and true result, I don't believe anyone on the spectrum would lie.

    The problem is that the NHS are looking for a disability, but although some people with autism have a disability too, I don't see autism itself as being disabled - it's better described as being "differently abled" and brings abilities and Strengths as well as difficulties.

    Keep reading and posting questions and sharing your experiences. I believe it's the best way to help ourselves.

    All the best 

Children
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