How did you explain to your DC their possible diagnosis BEFORE diagnosis?

[skidd]

I am really struggling with this as DS1 (age 4) has been under a paed for almost a year now (well that means 1 appt a year ago and another in 2 weeks) and has a lot of difficulties which may or may not merit a diagnosis of HFA/AS.

The problem is what to tell him and his older sister about why he has difficulties. It seems unwise to talk about autism before we even know if he has it but for his sister I think it is important for her to understand why DS1 gets so upset/has tantrums/doesn't interact with his peers etc. For him I want to explain to him clearly and gently what this appointment in 2 weeks is about but without 'giving' him a diagnosis/label IYKWIM.

I have said a few things about some people's brains working differently and finding some things more difficult but it has all been quite vague.

Any advice? Thank you

Skidd, how old is your DD? Just try to explain his difficulties as they happen, IMO. My DS2 had a DX at 3.5 but his 5.5yo brother wouldn't have understood. I just said that DS2 has difficulty learning things like you do and finds it hard to remember how to behave appropriately. He finds sharing or waiting etc difficult but he will learn in his own way, it just might take longer. HTH.

Thanks, she is 6 (and NT) and I think she could understand quite a detailed explanation but I'm not sure. The thing is, if I say DS1 finds learning some things really hard I think she will ask why and then I'm not sure what to say! She gets cross at how he gets treated differently so Ithink I need to give her a proper explanation but maybe you're right - I should just say something if and when it arises...
Thanks for your input - any other advice gratefully received!

I am a terrible mum. I ducked out of telling DS1 about his Aspergers for years. I had seen other people openly talking about the kids Dx and I really didn't want him feeling bad about himself. Probably naive of me. Anyway he was Dx at 8 and we told him last year at 12. I got him to watch a Newsround short film about ASD and he picked up on it straight away and started asking questions. It was very positive. Anyway he is in Secondary School now, and it has an ASD school next door and they do a lot of shared learning throughout the year groups.

I supposed it helped with DS1 that DS2 went to a special preschool that encouraged siblings to visit, with children with DS and CP who 'looked' different, so he found it easier to accept that DS2 was different.

Sallybear - but didn't you have to explain why he was having all these appointments during the diagnosis process or did he never ask?

Skidd, bless him he never asked. I think he thought it was to help him with writing, but deep down it was a good way to get out of school! We only ever had about three appointments. Since his Dx the Paed has discharged him, which is fine. I see her anyway as DS3 has "typical" autism so I can always ask her opinion anyway. I am fortunate that I have known her for 12 years. So I think that there is a certain amount of licence and networking involved.

Thanks Sally - maybe I shouldn't say anything unless he asks....

He has been going to regular appointments at the Eye Hospital as he has a squint and the other week he said, 'mummy why I have to go Eye Hospital?' and I realised I had never even explained to him that he had a squint, had just dragged him along and made him do all these tests and he had never thought to ask - made me feel awful but maybe it was actually not such a bad thing to do? I hate the idea of him just following along completely bewildered