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Very long question, Diagnosis time - what should we be asking?

(9 Posts)
BonesyBones Tue 19-Jan-16 11:20:16

We have an appointment with the child psychologist at the child development clinic tomorrow to "discuss their findings" in relation to DS (age 8).

We've know he wasn't typical since the age of 2, at the time nobody really listened to me about it. Nursery picked it up at 3 (but just wanted to keep an eye on it), school picked it up the following year, but carried on keeping an eye).

DS moved schools in primary 1 and new school made slight provisions for his differences, gave him his own table to work at etc.

Moved school again in primary 2 - not by choice, schools were merging and getting a whole new building/mixed classes etc.

New teacher picked it up immediately and referred him to school nurse, who sent him to a paediatrician at the child development clinic, who agreed that some kind of autism was very obvious and referred us to CAMHS.

We then moved to a new city, so another new school. CAMHS appointment had never come through (despite waiting over a year) so we couldn't transfer and had to start the process again. All the while getting very little support for us or DS.

Fast forward to now and DS has been seen by the child psychologist and a SALT, who now want to speak with us. School are absolutely certain tomorrow will be diagnosis day, and it is now so painfully obvious to everyone around DS that this is very real.

School now have him his own table, own coat peg, special writing boards, visual timetables all over the school, grippy pencils, chew toys and a one-to-one teacher twice a week. They actually want to do more, but can't without diagnosis (not sure why, finding maybe? I know chew toys and some other stuff came from head teachers own pocket).

So I guess we're ready for the diagnosis, which we're fairly certain falls into aspergers - though I think they call everything ASD now don't they?

So once we're told tomorrow, what should we expect to happen? Does anything happen? What do we need to ask? Will DS get any support outside of school? Should we tell DS about it? He doesn't know that's why he's being seen, just thinks they're routine appointments. Is there anything we need to know, or do, or ask?

Hopefully someone can help.

BonesyBones Tue 19-Jan-16 12:46:41

If that's too long I'm basically asking if there's anything that should/shouldn't happen, or that we should ask/do, following an expected Aspergers/ASD diagnosis for 8 year old DS?

MilkshakeMonkey Tue 19-Jan-16 13:32:45

Hi - I didn't want you to go unanswered, although may not be the best to help.

DS (6) was given ASD diagnosis end of last year, so from my experience...
I would say my DS is high functioning, but yes it seems to be called ASD.
Once you have diagnosis, basically yes you are open to more support/funding. It's a case of where you need it. So the school can claim for things/ 1-2-1 etc if they need it. You will be able to attend workshops etc at no cost to you

I think if you get diagnosis, ask what happens next. DS had to have genetics blood sample and will have follow up paed appt in a few months. We are attending a post diagnosis workshop and have been sent on unisafe training (as DS gets violent)

Maybe ask school SENCO if there is anything they think you should ask?

BonesyBones Tue 19-Jan-16 15:03:12

Hi Milkshake thanks for replying, blood test? What's that for, research? I hadn't heard of that before.

I don't know if we have a SENCO, I know what one is and what they're supposed to do but have never been put in touch with one or even had it mentioned in any of DS schools. Maybe we don't have them in Scotland? I don't know.

BonesyBones Tue 19-Jan-16 17:30:48

Does anyone else have any experiences of what to do/expect next please? Meeting is first thing tomorrow so keen to know anything that may be important.

PolterGoose Tue 19-Jan-16 18:33:36

Message withdrawn at poster's request.

PolterGoose Tue 19-Jan-16 18:34:39

Message withdrawn at poster's request.

BonesyBones Fri 22-Jan-16 10:30:28

Sorry I took so long to come back. Thank you all for your responses. DS has been diagnosed with "classic autism". PolterGoose thank you for that video it looks very good for explaining DS diagnosis to him when the time comes.

blaeberry Fri 22-Jan-16 14:34:01

Hi, I'm in Scotland too but my dc doesn't have ASD. SENCOs are an English thing though there is a recommendation in my LA that schools should have someone dedicated to ASN so I suppose they would be the SENCO equivalent. (Additional Support Needs is the Scottish equivalent of SEN but take in a slightly wider group).

Blood test is often done for genetics though you might not have this as you have a diagnosis.

Having a diagnosis shouldn't make any difference to support provided in school as this should be based on needs. In reality it can help to reinforce an application for support and will give you access to ASD support services.

There isn't a Scottish equivalent of a EHCP. The new thing being introduced is a 'Child's Plan'. These should be put in place by next August and outline the barriers to the child's learning and what support should be put in place. However these are not statutory documents and as far as I can work out they carry little weight. In reality, it pretty much comes down to what the school and LA are prepared to provide (Though it seems that can be the state in England too despite the EHCP).

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