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What happens next?

(8 Posts)
ihavenewsockson Tue 30-Nov-10 16:50:35

As per my previous thread, we've just had a verbal diagnosis of ASD for DS1.
What happens now?

i had a look on an ASD website and it had the 'chain of information' leaflet but we seem to have missed a few points of call.

We had an assesment with the pediatric consultant who did, amoung other things, the Griffiths test (not that I knew that at the time), we are waiting for SALT assessment and I think the peditrician is contacting the local portage group.

What else do we need to do? What will happen now, is written confirmtaion of the diagnosis a long way off?

TIA.

SausageMonster Tue 30-Nov-10 18:48:07

What happens now?

Not a lot I'm afraid unless you take up the reins and insist that your DS is provided with support for ASD.

We all thought that as soon as a diagnosis wasgiven that support would kick in. That's not always the case. Most of the time you have to ensure your DS's needs do actually get met by school etc.

If you've had a verbal dx the Paed should follow up with a written dx. Pester them until they do.

Wait a reasonable amount of time (28 days at most) to see if local portage group contacts you - if not chase up the Paed's referral.

same for SALT - if you don't get an appointment within approx a month chase them up too.

You may wish to consider applying for Disability Living Allowance for him.

It'll become a way of life but if you take your eye off the ball they will too and your son's needs will be ignored.

Best wishes

ihavenewsockson Tue 30-Nov-10 20:09:44

thank you.

I feel like I am completely in at the deep end with this. I'm the kind of person that researches things alot, but there is just so much information adn such a variety on the spectrum, it feels very overwhelming.

SausageMonster Tue 30-Nov-10 21:44:41

the kind of person that researches things alot

That's the best thing you can do for him.

Reserach ASD to learn to see the world from his eyes - then you'll start to realise what sort of support he'll require.

It may be that he's doing fine at school - or so they'll tell you - but monitor his progress very closer and if you have concerns demand school takes action. If SALT make recommendations make sure that school implement them.

Best wishes

ihavenewsockson Tue 30-Nov-10 21:59:01

He's not at school or pre-school.

He's 3 and (hopefully) going to be taught at home, altho we go to 2 sure start groups per week.

Research, research, research....

TooOrangeyForCrows Tue 30-Nov-10 22:07:36

I would add:

Ration your research on ASD to avoid overloading yourself. Not all of it will apply to your DS.

Join your local Autism Group

Make friends with the school SENCO.

Concentrate on identifying and meeting your DS's needs on a day-to-day basis.

Also, ask the person who gave the DX about the EarlyBird course, and try and get on one as soon as possible.

ihavenewsockson Tue 30-Nov-10 22:23:18

ok, good good.

I'm trying to watch DS and see areas I can help him. alot of it he has already trained (?) us in, we have always been really routined and keep his favourite things closeby- two sets of dino PJs and his bedding gets washed & dried in the day.
Things that I didn't realise were part of his behaviors.

I saw today how he met a little girl at the leisure centre and was looking at her but looked completely stumped as to how to 'talk' to her or initiate communication. So he just looked at her and when she didn't respond, he looked for me and came away.

It's funny the things you notice when you're looking.

I'm phoning the pediatrician tomorrow to get a written report of the assessment so I can go to the council - they do the EarlyBrid coure.

ihavenewsockson Tue 30-Nov-10 22:23:59

Sorry that's all jumbled- my thoughts made alot more sense in my head!

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