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What to do when the NHS says your not autistic?

MattyB

I recently had my autism assessment and have been advised today that they do not believe me to be autistic. This has left be disappointed and upset and quite frankly unsure what to do going forward. Deep down I still believe I am but that doesn't really count for much when the professionals say otherwise. Has anyone else had a similar experience? Would really appreciate any advice, thanks

Parents

  • My first outcome was that I have "features of autism", "features of avoidant personality disorder" and I struggle to do things because of "low mood", but didn't score enough points to get an actual diagnosis of anything. I was offered counselling, a course and drugs.

    I didn't do the counselling, but took the drugs for 18 months and did the pretty useless course. I couldn't accept the result, but was too switched off from life to do anything about it. That was 3½ years ago. Last year the new autism service in Wales offered me a new assessment, and I got a diagnosis in August, although I'm still waiting for the report that I've been promised by the end of this month. The person who did the assessment this time did my pre-diagnostic appointment the first time, and told me she had disagreed with the previous result, so she had to be very thorough and sure to overrule the previous result.

    It's now just over 5 years since the NHS recognised I may have it, so it's been a very slow process, and I think I'm lucky that the old service has been replaced with a new one who seem to be doing things differently. If I'd been up to challenging the previous result at the time I don't know how that would have worked out.

    I think Wales is better than much of the UK, so what you may be able to do about it probably depends on where you are, but they don't necessarily get it right first time, and if you're not happy it can be worth trying again.

  • in reply to johnsb

    Well thank you all for the supportive replies. To answer Trainspotting, I unfortunately suffer with most of those issues apart from being clumsy. I'll post more once I get the stuff through the post. In hindsight they didn't seem to ask much about present day me which is where most of my issues seem to be now getting more noticeable

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  • in reply to johnsb

    Well thank you all for the supportive replies. To answer Trainspotting, I unfortunately suffer with most of those issues apart from being clumsy. I'll post more once I get the stuff through the post. In hindsight they didn't seem to ask much about present day me which is where most of my issues seem to be now getting more noticeable

Children
  • in reply to MattyB

    Why they may seem to be more concerned with your past is that autism is a lifelong condition - you do not begin to have symptoms in later life and the characteristics will be showing by the time you are two or three.

    So you have to relate your present to the past. Autistic trends would be recognisable in you as a child, which is why some sort of history from a parent, school reports, or close relative are helpful.  So you would need some sort of evidence even if it is being able to answer questions yourself as to your younger self.