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Only took us eight years....

KathyM

Hi folks,

Here is our previous thread that takes us from way back years ago to more recently:

http://community.autism.org.uk/discussions/health-wellbeing/diagnosis-assessment/hello-aspergers-diagnosisschool-advice-needed

Well after eight years of asking CAMHS to assess and them refusing, after a move away to under a new CAMHS umbrella, they finally started in June this year.  We were told he wasn't autistic, then that he had ADHD, then told actually he didn't have ADHD, then that he might have "subthreshold" ADHD and ASD and Dyspraxia, and finally this week I'd had enough.  I've actually had enough a lot of times but you guys know how that feels, we just keep on keepin' on.

Well today Dan saw the OT for the final appointment for his baseline assessment and also the head clinical psychiatrist who pulled us to one side afterwards and told us she feels Dan is autistic and nowhere near as mild as first thought.  She said his sensory needs are massive and he's living in a bubble.  This is only a "working diagnosis" until she has spoken with the Professor there about over-riding the ADOS (which initially they said showed no traits, then reassessed as being inconclusive).  It might be he needs to be seen by the Professor and that he gets a different diagnosis, but it's extremely unlikely. 

She said that the eye contact threw the ADOS assessors as he gave "good" (ie. duration) eye contact.  What the psychiatrist feels is that eye contact shouldn't be presumed to be missing with ASD, as some people with ASD have high duration of eye contact, but it's still abnormal eye contact.  This is what she said about Dan - she said he stared at her too much.  In the ADOS he could also describe a basic emotion but he has routinely failed this ever since (he has a major issue with recognising his own emotions and others').  She said she hates the use of the word "normal" but that he is not functioning anywhere near normally.  When I said it was a relief to hear that I hadn't been a doormat all this time to a spoilt, manipulative kid (as others have judged me as for talking him down from meltdowns, and for backing him up at college) she said Dan is just not capable of thinking in that way.  

I feel totally selfish for feeling totally overwhelmed by what she said - she wasn't describing a 'mild' case as I had been expecting.  She has said that he is always going to have big problems outside of his bubble and the safety he feels at home.  She also said his sensory needs are massive, which we suspected, particularly sound but also others.  I feel so bad for him, and it's daft as this diagnosis doesn't change who he was yesterday or who he'll be tomorrow.  I want to have a good cry but it isn't about me, it's about him and so I feel selfish for feeling really emotional about it?  

Thanks

Kathy

xx

  • Thank you for that.  Yes with the ADOS, I expect that was an overall average figure (here is the research: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2864898/) and I don't know why they use it, apparently the DISCO is more in-depth, although no clinical tool is completely reliable and as I say, they are optional anyway (which it even states in the NHS NICE Guidelines).

    I can't believe they aren't diagnosing his SPD when they admit how severe it is.  It's clearly down to the fact that they don't have/don't intend to provide support with it which boils down to NHS resources.  I understand they want to help the most severe cases of autism but people at the high functioning end suffer more in many ways because the disability is so much more invisible and the pressures are enormous.

    It is common to be sent off to sort out your own information and support sadly.

    We had the assessment yesterday but now have a wait until they arrange another appointment to feedback.  I fear the worst because of what we've been through with the NHS already.

  • Hi IntenseWorld - I'm sorry you're still traversing the minefield of assessment, it certainly feels very odd for it to have come to a conclusion so suddenly after all these years of has he or hasn't he!  You're spot on about the ADOS, the head clinical psychiatrist said the same today (although she said it was under 70% effective in people his age and above).  

    Dan will be getting his formal diagnosis in letter form very soon (as will Connexions and the college), the diagnosis is done and dusted and he will not be taken further in the service now unless OT decide to do some work with him on anger management and recognising emotions (which is likely).  

    They won't be diagnosing him with Sensory Processing Disorder, although his sensory issues are pretty big.  Apparently they don't assess specifically for it now and can only give very basic advice.  We're basically now being sent off to find out information for ourselves from now on.  I have no idea where to start - most advice and information is on younger children, not those in the transition to adulthood.  I am going to post in the relevant areas for more advice.

    Thanks ever so much for your reply, I hope things get sorted very quickly and thoroughly for you xxxx

  • I so know what you are feeling.  Four years ago I tried to get my eldest assessed and was fobbed off.  This year she was assessed by our CAMHS and she just missed the scoring for ASC on one of the tests (they did comment she had some atypical eye contact and not great reciprocal conversational skills but because she was able to describe some things she had done [!] they thought that was against autism) meaning they failed to diagnose her.

    So now we are going through a reassessment out of area, the possibility of differential diagnoses looming, or even another appointment (we've already had two) in case they are unsure.  I personally feel it's over-egging the pudding as she has a high genetic risk with myself and her only sibling also on the autistic spectrum.  She has admitted to stims (sterotypies) and OCD-ish behaviour in her questionnaires, but they are still utterly non-committal and I don't know which way it's going to go (even though I am 100% sure she has it).

    The ADI-R scores her well within clinical range, and she has all the traits of Asperger's.

    BTW the ADOS is only 77% reliable in high-functioning individuals according to research.  Never forget (and never forget to remind clinicians who do forget) that all clinical tools are optional and they should not be relying on them!

    It's all so hard isn't it.