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