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It's going to take longer than I thought

I'm done with Christmas Cards

I really wish I hadn't been pinning my hopes on being told my diagnosis at my evaluation interview (as some people have, apparently) or shortly afterwards.

When I was seen by the clinician, she explained that the notes she took would be reviewed with the consultant and the chance for this to happen comes round only once a month. Even then, the decision might not be definitive but require further tests. To be fair to the clinic, they did explain this when they saw me - it's taking a while to get my head round it I think.

So I checked with them and there was a meeting last week, but my case wasn't discussed. It might be discussed 1st week of April. The outcome then might be yes, no, or more tests needed (e.g. ADOS).

So I'm not realistically going to hear anything until mid April at the very earliest, and goodness knows how long it will be if I have to be scheduled in for ADOS.

Parents

  • I’m really sorry to hear that you’ve got to wait even longer. Do you know what, I’ve decided that this whole adult diagnosis thing is just fraught with stress and anxiety BUT from reading a lot of other people’s reflections I am positive that this is just a phase and the head space that you end up in after the stress of assessment/diagnosis/adjustment is a whole lot better than the head space we all started off in prior to seeking assessment. Just take it one day at a time, that’s all any of us can do

  • in reply to Kitsune

    Thanks Kitsun, I have to try to forget about it now I think. Not easy when it's become your obsession! I can't help thinking that a bit more "expectation management" from the NHS would be helpful - but I know this can't be top priority.

    What might be possible, though, is for NAS to collate peoples' experiences and provide some more narrative of what to reasonably expect, and at least then people would be better prepared for the timeline and potential twists and turns.

  • in reply to I'm done with Christmas Cards

    I feel like trying to forget about it is easier said than done because you’re right it does become an obsession. I’ve said this before but they really need to standardise the assessment and diagnostic  process across centres. I had two consecutive assessments and verbal diagnosis on the same morning, job done! That was stressful enough, but the amount of waiting around that you’re having to endure is an awful thing to inflict on members of a group who by their nature over think everything and tend to have higher than average levels of anxiety, it’s just not fair!

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