Aspergers - can someone explain please?

[proudmum74]

Hi - I've just been told that my DN (3.5) has almost certainly got Aspergers.

This was a surprise to everyone, especially his parents, and as a family we don't really know much about the reality of what that means on a day to day basis.

I'm a mum of a SN child, and I know when my DC was first diagnosed I was surrounded by people saying inappropriate things whilst trying to be helpful. I really don't want to do the same thing, so I was wondering whether anyone has any advice on how I might be able to help, whilst still respecting their need to deal with this in their own time / way?

Thanks

[SallyBear]

I would lay off saying anything at all tbh. It will be a while to process their shock at the dx. You will know the right thing to say when they're able to start to talk about, but until then I would just behave as you do normally. They will appreciate that I am sure.

[EllenJaneisstillnotmyname]

I'd maybe just let them know that you are there if if they want to talk. I always tell people on here that their DC hasn't changed, they're still the same lovely child they always were, but that may be harder to say in RL?

[troutpout]

I'd agree with Sally and not say anything for the time being and just behave as normal. In this way you are kinda saying that your dn IS the same child he has always been .
Just keep supporting and enjoy him :-)

[Shannaratiger]

Me and my dd have mild ASD (autism spectrum disorder) and dyspraxia. I agree with the above posters, don't offer any advice. They will need alot of support especially with the inevitable melt downs, especially in public when everyone judges you. He will still be the same lovely child, but life is soo hard for us to deal with.

[beautifulgirls]

Day to day? It could mean so much in many different ways. They are all individuals and all have different levels of need to be supported. It is likely your close family with find ways to deal with your DN, as they probably already have been doing so far without necessarily realise it. I would suggest the Tony Attwood book "The Complete guide to Asperger's syndrome" as a great source of info.
What should you do? I would give your relatives a call up and just ask them how they are doing, how they are feeling and let them know you are there if they want to lean on you for some moral support. Point them to the forum here if they aren't already on too as they can ask many questions and get some first hand opinions.

[proudmum74]

Thanks everyone - to be honest I've pretty much said what EllenJanesaid, as that's what helped me when my DD first got her DX.

In the future, are there any websites you can recommend that will help us understand the best way we can help my DN? i.e. any ways we can change the way we interact that might help etc.?

[proudmum74]

thanks beautifulgirls, that's really helpful

[EllenJaneisstillnotmyname]

This has been my best source of information. The NAS website is OK, but Tony Attwood is the Aspergers 'guru.'

[WhoKnowsWhereTheTimeGoes]

Just listen if they want to talk and be supportive. Sharing your own experience of SN might help them feel less alone and give them a much needed opening to talk. My DS has AS, diagnosed at age 7 but I was sure he had it from age 3 and yet even people who know him quite well often don't realise he has SNs, he behaves very normally in many respects but just seems quirky, which is great but makes it hard to actually start talking to anyone about it. Which I often want to do.

[CwtchesAndCuddles]

Sorry you've had a shock op - that's young to get a diagnosis but that is a good thing and means DN should get the help they need on starting school.

Were the parents not expecting the diagnosis? It's a lengthy process here and by the time ds was diagnosed at 3.5 he had been in the system for 18 months, and we had a working diagnosis for a long time before he had his ADOS and confirmed dx.

[suburbandream]

As others have said, I wouldn't offer any advice, other than just letting them know you are there if they want to talk. When DS2 was diagnosed, what hurt most was when family members tried to avoid the subject. I would much rather they had asked me about what it meant (it took a long time for diagnosis so I knew a lot about it by then) If you want to find out more, Tony Attwood is good, and I really like this book here. It's very small and simple to read. As I'm sure you'll soon be aware if you aren't already, the spectrum is huge and Aspergers children can vary enormously - your DN is still very young and will make huge progress. DS2 has Aspergers and at nearly 9 is such a completely different boy from how he was at 3.5 (in some good ways, and some not so much )

[proudmum74]

Thanks again for all your advice!

I'll take a look at the books you've recommended. The way I've left it was to just to let them know that I'm there if they need to talk and it doesn't change the fact that DN is still exactly the same lovely child he was pre DX.

In some ways the fact that the family is used to my DD SN, means that as a family we're used to openly talking about it and asking questions, so hopefully that will help at least foster an enviroment where his parents feel they can talk about DN SN when they feel ready to...

cwtchesandcuddles - nope, they had no idea. Were told DN may need SALT, when they went to the hospital they were blindsided with the potential DX. I agree it's good they've got a DX so early, as it hopefully means support can now be put in place, but I think it may take a bit of time for the rest of the family to see that....