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DS (almost 13) finally diagnosed with Aspergers - what next?

(16 Posts)
grumpmitchell Wed 17-Feb-16 18:56:17

Finally received diagnosis of Aspergers for my DS yesterday. He is 13 next month. Nothing will change on a day to day basis for him or is I realise but I'd really appreciate some advice on what I can expect to happen next?

We have a meeting with the autism team and the school next week where a 'care plan' will be discussed. I have some ideas of what I need to ask the school about.

But please could you give me some ideas as to what will happen 'officially' next? Is there anything else I should do or that I need to start arranging or doing?

PolterGoose Wed 17-Feb-16 19:33:46

Well done flowers

How does ds feel about it?

Practical things:
- obviously talk to school! But also things like having it noted at the dentist, optician and any clubs he goes to.
- if you haven't already, apply for DLA and Carer's Allowance if you're eligible
- get on the mailing list for your LAs 'short breaks' service, which should provide activities and support to access leisure stuff.

Also:
- get ds some books about AS, there's some good stuff around idioms, social skills and for later relationships
- there's also some good stuff on YouTube, a few posters say their ds's like 'Autistic Genius'

Most of all, focus on what he's good and and develop that, don't sweat stuff that won't be important longer term!

grumpmitchell Wed 17-Feb-16 19:47:47

Thanks for the reply.

I haven't spoken to DS about it yet. I'm waiting for a time when he and I can be alone to talk rather than having ds2 interrupting. I don't think he'll be enormously phased by it to be honest but I want to have the time to discuss it properly.

I've had a look at books on Amazon already but any thoughts of reasonably accessible ones would be appreciated. I'm also a bit wary that they might be a bit US based in the info that they give.

Thanks for the ideas about dentist etc - that's a really good thought.

PolterGoose Wed 17-Feb-16 19:51:58

This survival guide is good.

grumpmitchell Wed 17-Feb-16 19:59:55

Thank you, I'll have a look...

PolterGoose Wed 17-Feb-16 20:58:57

It's really hard knowing which books will be liked. I tend to buy what looks good and leave them lying around and ds might have a peek or I might read something out to spark a discussion.

grumpmitchell Thu 18-Feb-16 16:54:44

Sorry for delay in replying. I think I might order a few from Amazon (couldn't find any today in Waterstones) and see which seem most suitable for him. Bad day today. Diagnosis has just hit me like a ton of bricks, he's in a funk today so I still haven't spoken to him about it and all I can think of us his future as an adult. Ridiculous I know, since nothing's changed but still sad.

PolterGoose Thu 18-Feb-16 17:02:22

Things are improving for autistic adults all the time, and the Internet provides a wealth of opportunity for social contact for even the most reclusive aspies smile

grumpmitchell Thu 18-Feb-16 22:19:29

Thank you, I'm sure you're right. I need to get my researchers head on good and proper now.

grumpmitchell Thu 18-Feb-16 22:19:46

Thank you, I'm sure you're right. I need to get my researchers head on good and proper now.

cabsarehere Fri 19-Feb-16 17:21:13

Hi,

My ds is 12 and we are awaiting his assessment ( should be june/July time).

If you don't mind me asking, how long did the assessment process last? Were there lots of appointments?

I'm quite worried about how to explain the whole process to ds. I really wish I'd got this all out of the way years ago!

grumpmitchell Fri 19-Feb-16 17:40:48

Hi. The whole process from initial doctors appointment until diagnosis this week has been a little over 18 months. The first appointment following the GP's referral was about 4 months, then we had 2 appointments with a paediatrician about 6 weeks apart where I basically had to be a bit of an arse to get him referred to the specialist team. Then it was 11 months almost to the day until I was called for an appointment with the psychologist to talk about DS without him there. About 3 weeks later he had an hour with the same psychologist and then a speech and language therapist visited him in school. That was 2 weeks ago. I had a follow up appointment this week where they gave the diagnosis and there is a care plan meeting with the diagnosis team, me and school next week.

I haven't yet told DS the diagnosis as I want to properly spend some time with him first but throughout I've described it as trying to find out if he has a special brain. I didn't want to tell him the word 'autism' or 'aspergers' until we knew which they would call it. Hope that this helps.

cabsarehere Fri 19-Feb-16 17:48:10

It's all so complicated and dragged out isn't it. We are going through a new pilot scheme in our area so I really don't know what to expect. I wanted to avoid CAMHS if I could.

I haven't mentioned ASD to DS yet but have mentioned about getting some help with his anger.

I could kick myself for not starting the process years ago, it feels so much harder with him at this adolescent age when all he wants is to be accepted and fit in.

We will get there.

I hope everything turns out well with your DS.

grumpmitchell Sat 20-Feb-16 10:59:45

Yes I can understand you wanting to avoid CAMHS, my DS spent a good while going to appointments for CBT type help with CAMHS and at no point did they consider that he might be on the AS spectrum. These are supposed to be the experts and so I am disillusioned with them. I shouldn't generalise for all areas though, I know. I could say the same for early SALT, health visitors, paediatricians over the years. The first person to articulate to me what I had always thought was an art therapist, to whom I will always be grateful for the validation and the support. But hey, it's done and we can move forward which is great.

Good luck on your journey. Let me know how you're getting on. It can be a lonely and frustrating road. But worth it in the end I hope thanks

grumpmitchell Sat 20-Feb-16 11:01:54

Oh, in terms of approaching it with DS, I told him last night and he said 'oh right, can we watch this now?' Later on he was pleased to be 1/100 'special'. I don't kid myself that this will be the last conversation but that was a start...

cabsarehere Sat 20-Feb-16 11:23:37

DS had speech therapy too and they never mentioned asd either. I am the only person who has mentioned it.

It's been the last year that I have really noticed the gap in social skills widening between him and his peers, that's what finally pushed me to request assessment.

I love that your DS has taken it all in his stride!

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