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Diagnosis: what to share & to whom?(2 Posts)
We finally have diagnoses of ASD, DCD/Dyspraxia and mild ADHD. Now feeling (amoung many things!) confused about what to share with those that know the journey we have been on.
DS (6.5) is on the higher functioning end of the spectrum so if we say autism, or even aspergers/ HFA to help people understand as these are more familiar terms (& applicable to DS - we have had many naysayers refuse to believe autism a possibility) we worry that this will lead people to have preconceived ideas & expectations of DS. We have considered simply saying he has dyspraxia, and explaining that this often comes with many traits of autism. Dyspraxia seems to have less preconceived ideas, so it could suggest DS is wired differently but with less expectations of particular behaviour.
DS is aware he is different - 'why doesn't my body & brain work like other children' - so he will benefit from us being open with him, but equally he gets very embarrassed & cross about us talking about him to others (in any way at all, not about SN). We are so proud of him & the way he battles all his struggles & are very open with him but his sensitivity makes me feel its not up to us to share the hat trick diagnosis & he may resent this when he's older... but equally is it doing him a disservice if we hold information back which could make people more patient & understanding?? Argh!
I would appreciate any experiences you have had of either being glad or regretting being open from the beginning; or similarly feelings having kept it only for those that really need to know e.g. school. If anyone had several diagnosis to consider, your experiences would be mega helpful too.
Please be kind! Feeling overwhelmed & just want to do the best for DS both now & in future.
Following with interest.
My DD was put on the Dx pathway very young and in retrospect I think I told too many people (e.g. parents of her school friends) - just as a way of managing my own fears and anxieties. I was also told that it would make e.g. playdates easier if parents knew she was autistic rather than unfriendly or standoffish - but as she gets older I worry that DD may not want her friends to know, and if she doesn't then it's not great for their parents to know. So I'm trying to stop talking about it in this context (I'm not sure anybody other than close friends/family ever really believed it anyway, and it's long enough ago they may assume it all blew over). Especially as I remember how much I HATED my Mum talking about me as a young kid (which she then stopped doing, because she is ace ).
However, I do think it's important for DD to know (we haven't used the word autism yet as she doesn't know what that is, but we talk a lot about her brain working differently to some of her friends and struggling with transitions, finding new places overwhelming, not liking to perform, not liking loud noises which I think in time will naturally lead to giving those characteristics a name).
And I also think it's important for school to know, so they can keep an eye out, make accommodations, etc. I guess I worry less as DD seems to be bright so I think at school at least there shouldn't be preconceptions of what she can do academically. She also seems to respond best to doing things in her own time and her own way rather than being pushed too hard anyway, so at this age I'm happy for expectations to be lower around things like joining in noisy activities.