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who do you share diagnosis and reports with

2 replies

Mapleleaf3 · 19/02/2015 22:13

We have just got back Margo Sharp's report and ASD diagnosis for DD2 (age 5.5). It is very comprehensive and thorough. I think it will be incredibly helpful for school to see it, but there is a part of me that feels like I don't actually want to share it, that it is private. But clearly that won't help DD. I guess I just wondered how widely you share reports? I will send it on to the other HCPs involved and to school, though I think I might print it out for school, so that they don't have an electronic copy to share with anybody and everybody. What have others done?

Also, what about a diagnosis? I mainly feel that it is nothing to be ashamed of and that others knowing will mean they can understand and support her. So, my initial thought is to tell others. Friends and family and school already know we are in the process of an assessment, so it is not something we have hidden. But when do you tell new people? DD is HF in some ways, meaning that it might not be immediately noticed. But, she is also incredibly shy and anxious and withdrawn, meaning that I am sure most people notice right away that she seems different.

We have not told her yet, we are waiting for the Camhs Psychiatrist diagnosis (should be soon) before we do. And I will obviously want to tell her first, before she hears me saying anything to others. But for example, it feels like new playdates etc would benefit from knowing, so that they can be more understanding and patient, but I also don't want to breach her trust.

So, I guess my question is, who do you tell and when? She is young enough that it feels like my decision at this point, but one day she will be old enough to make it her decision, so I want to make sure I set out in a way that will also work for her later, if that makes sense.

Would love to hear what others have thought and done in these situations?

OP posts:
defineme · 19/02/2015 22:30

I tell everyone tbh. I have friends with kids with sn who have sent them off to activities and playdates with no forewarning. I think that's a huge disservice to the child because there are expectations placed on them on the assumption they're an nt child. Information is power and I want everyone who knows my ds to treat him appropriately and inclusively.
Regarding respecting ds' s privacy: he has home specific behaviours that I only tell health professionals about because, bearing in mind how I would have reacted before I had him, I wouldn't expect most people to understand and not be shocked. I don't want anyone thinking badly of him so I wouldn't share info about something like his aggression unless I thought it might happen with them or it was a professional who could offer me support.

reader108 · 21/02/2015 19:26

I explain a little he has problems with this this and this. My Ds doesn't know his dx he already has self esteem issues it would be his excuse to not even try. I tell him the same trouble with certain things finds some things harder then other children. I work along the lines that we all find some things difficult we all need help with things sometimes. School know his dx and have access to his Ed psch report and its recommendations not sure anyone has every read it mind

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