Aspergers Diagnosis (what do I do?)

[pinky80]

Hi,I'm new to mumsnet and joined as DS(6)was just diagnosed with Aspergers.Hoping I can get some help and support here as I really don't know how to feel or where to turn.I always knew he was a bit different and love that about him.He never gives me any trouble and is such a gentle soul.I am devastated thinking about him having social issues and possibly being bullied.It would break my heart. I am really overwhelmed and trying to find out how I can help him.I know the best thing to do is try and explain in some way that he's a bit different and that's ok.How did ye explain it to your kids?We have a social worker calling next week.I think she will be providing info on different support groups we can attend.One minute I'm fine thinking so what it doesn't change anything and then I'm bawling.

[2boysnamedR]

Hugs - different diagnosis here but I drip feed my son. Little bits every few weeks. He's seven and emotional four so it's the only way for us. He knows he is dyspraxic, he knows the main symptoms. He doesn't know it's for life, he doesn't realise he's different

[senvet]

It is such an odd moment getting a diagnosis. Part of me was glad to have a route-map for sorting the future, part of me was just wishing for a magic wand to make 'it' go away.

You paint such a lovely picture of dc's strengths and those will not go away, he will always be a gentle soul, and he will have you, and you obviously love him to bits which is the most important thing.

Looking out for bullying is a good thing to do, but many kids in mainstream primary are very accepting of someone who does things a little differently.

Looking to the future, my relative had lots of language therapy to teach him mainstream body language through the conscious channel. He is now married, earning paying taxes etc.
My other relative is a gold medal blood donor, loves helping at an autism charity and helping family with baby sitting etc and did a sky dive for her birthday. She was diagnosed much later but is happy.

It is a description of the dc you already know and love, not a judgement.

You and he can still have a very very happy life

[Ineedmorepatience]

We love the book "Inside Aspergers, looking out!" And for me Tony Attwoods "Complete guide to aspergers" has been a god send, you can dip in and out of it using the index for things you need help with.

But ultimately, this board and the SN Chat board are the very best place for advice and support from real experts, parents on the ground doing the job day in, day out!

Be kind to yourself, its a lot to take in, good luck

[veronicasawyerheartsjd]

Hi pinky my ds is also 6 and I am expecting a dx at the end of March of Aspergers. How you feel is normal, I feel the same and am worried about the future.

This board is a great source of help and support. I have just joined a local Facebook support group too and have already arranged to meet up with a Mum who lives a mile away from me and am going to a support group cafe meetup next Friday. It is still a tough time but these little things are helping.

I worry about what to tell my boy too, but our paediatrician has said they will help us with telling him in an age - appropriate way. I think it will help his self esteem in the long run to know there is a name for how he sees the world.

[pinky80]

Thank you for the responses.It is like one minute I want "it" to go away and then I'm really annoyed with myself because "it" makes him who he is which is absolutely perfect.I wouldn't want to change one thing about him.I just hope other people are kind and understanding.I never thought I'd be in this situation and am really thrown.I suppose it has given me a whole load of new worries and I'm finding it difficult.I did get that book by Tony Atwood but so far it has just made me feel worse about the whole thing.I think that one side of me is still saying sure he's fine and will cope but parts of the book make me so sad when it says things like "I was on the outside looking in".Seems like such a lonely place and no one wants that for their child that they love more than anything.I also find myself getting annoyed when he goes on about his obsessions whereas before I would have just gone along with it.I don't want to treat him any differently because someone gave him a label.I just want to see him as I did before.My quirky little gifted boy not my son with Aspergers and this is causing me a big struggle with myself.I guess it will take time.

[2boysnamedR]

Yes it will definatly take time. It took a long time for me to get over the way us. I still feel like some days. But mostly now I see that what it was meant to be. It's who my boy is. I'm proud of him. He's got a harder life yes for sure but he's still happy.

Also it's totally ok to except it's no bed of roses. You don't have to be 100% about it 100% of the time. I'm not. But I'm happy

[veronicasawyerheartsjd]

I feel like I am grieving for a life I / he won't be having now, and am overwhelmed by the amount of work ahead and worries for my boy. But I am also trying to read up lots on the positive aspects of a diagnosis and the happy fulfilled lives a lot of adults with AS lead. It seems to me an early -ish diagnosis and early support and help will help facilitate this happening.

It all seems very isolating and exhausting, do you have lots of support in real life?

[veronicasawyerheartsjd]

I worded that first sentence badly, I don't mean he won't have a life, just that it may be very different to the one I was expecting.

[AliceinWinterWonderland]

I think even when the dx is expected, it's still a shock and you need to take time to get your head around it.

[senvet]

I asked an ASD speaker if they could change and be mainstream, would they?

'Goodness No' came the reply. 'How could I write a book in 24 hours, or just gaze at an object for what turns out to be hours without having once to wonder what the time is?'

I am a wheelchair user and wouldn't change a thing. Really. Really really.

And my dx has sn and also says he wouldn't change it - it made him more determined.

Forget the label - it has its place, but not as a box for you to put dc in, just as a tool to help work out what might help him navigate through a mainstream world.

Good luck

[bitbap18]

My dd is very nearly 7 and also just diagnosed with Asperger's. It's been a long time coming, and we have a lot of problems because of it, and being fobbed off over the years. I felt pure relief when we got our diagnosis, but that's because of our battle. I can imagine if you don't have the battles then it would feel different.

Personally we haven't told her that there is anything wrong/different with her. Tbh I suspect she thinks there might be, and she notices differences anyway because she also has Hypermobility. We haven't felt the need to tell her yet, but we aren't deliberately not telling her, if that makes any sense! It's just not been necessary.

We've got more meetings with the consultant clinical Pyschologist in March, so maybe it will come up then.

My hubby has also just been diagnosed with Aspergers too, so I'm struggling with being the odd one out and where this leaves me in all of it. There seems to be support for them having it, but I'm struggling to find support for me, dealing with the fall out of their issues?!

At school the only thing that is really apparent at the moment is the social side and the lack of awareness of natural social cues, ways things happen etc. we've been told to expect things to become more prevalent around 10/11/12 years old.