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DS AGED 3 - AUTISM - SOME ADVICE PLEASE

14 replies

JAKEJEM · 30/05/2005 21:47

Hi there, my DS aged nearly 3 has a a preliminary diagnosis of autism. This was by the Child Develeopment centre under an urgent appointment requested by HV/GP. We have a "head to toe" assessment on Thursday by the Consultant Pead who specialises in ASD. We, as parents consider the diagnosis correct and the jigsaw of our sons life is all fitting into place with regards to his feeding, eating, social anxiety etc. Can anyone tell me when we will get a firm diagnosis - eg, how long will it take - what will happen on Thurs, do we get something in writing etc? Just after some general "what happens next" from a very heartbroken mummy.

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Jimjams · 30/05/2005 22:34

what happens next depends on the individuals you see. i'd push for a firm dx though as then you can access things like early bird, DLA, statementing etc more easily.

Sorry very quick message but wanted to say hi. Stay around there are lots of us on here.

(I have a 6 year old non-verbal autistic ds1 and 2 other boys).

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coppertop · 30/05/2005 22:39

What happens next really does seem to vary from place to place. After our provisional diagnosis for ds1 & ds2 we had a wait of approx. 3 months before we had a full multi-disciplinary assessment. Hopefully you will get something in writing soon but again that depends on the Paed. The 2 we saw both talked about ASD but in the report they only mentioned that they suspected ASD.

I'm so sorry you're going through all this.

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JAKEJEM · 30/05/2005 22:39

Hi JimJams and thanks for your message - we really need to push for this diagnosis as DS is getting worse by the day. The consultant we saw last week was certain but she said they cannot just diagnose on one visit and I wondered how many visits do we have to go through before someone can confirm and we can get the ball rolling for help.

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coppertop · 30/05/2005 22:40

Ooops! Should clarify that we got the "suspected ASD" thing after the initial Paed visit. With ds1 we got the proper diagnosis in writing after the full assessment. Ds2 will be re-assessed before getting a full dx.

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JAKEJEM · 30/05/2005 22:45

Hi Coppertop, thanks for your message too. The person we are seeing on Thursday is the "Head" of the CDC so I am presuming this will be the full assessment - just so we can prepare ourselves further (although it is so obvious, it still hurts when you get told) do they actually tell you there and then?? Sorry for so many questions just need to someone to talk to, although DH is being great - we are both heartbroken.

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coppertop · 30/05/2005 22:45

Jakejem - Do you have any other professionals involved yet? They can usually make a start with helping even without the full dx. Portage is also a great help for getting ideas.

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coppertop · 30/05/2005 22:48

Crossed posts. Yes they do usually tell you there and then. Sometimes they may ask you first what you think the problem could be but then they tell you. The exception for us so far was with ds2. We were told that he had all the traits etc but that he was still very young for a dx of AS. The Paed was the only person in the room who thought ds2 was too young (the others told me later!) but he had the final say.

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JAKEJEM · 30/05/2005 23:02

Hi Coppertop, yes we have lots of support, waiting for Homestart lady to come round, HV sorting other stuff out. In the preliminary diagnosis she told me that she was sure, I just wondered when we get written confirmation etc to start the ball rolling.

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coppertop · 30/05/2005 23:05

We got a draft report of the assessment about 7-10 days after the actual assessment. The full finished report arrived about a week or so later. You may get this even sooner if you don't have to have a meeting with the Psych, OT, SALT, Physio etc.

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JAKEJEM · 30/05/2005 23:06

Yes, she did ask me what I though the problem was and I said Sensory Integration Dysfunction which was instantly dismissed and replaced with autism which we suspected anyway but wanted them to make their own minds up. Im just getting worried as it seems like my little boy is getting worse by the day.

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JAKEJEM · 30/05/2005 23:08

Thanks for all this info Coppertop, sorry to keep asking you things, did your DS get help qickly after diagnosis or was there a long waiting list for things?

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coppertop · 30/05/2005 23:13

Have you filled in a sensory questionnaire yet? If so then the sensory profile will give you a lot of ideas about what to work on first to help your ds. Each child is different but ds2's biggest meltdowns so far have been caused by frustration at not being able to get us to understand what he wants (he thinks we are all psychic), and after sensory overloads. We've made a few relatively small changes to the way we do things and it has had a big effect so far. It really seems to help psychologically when you have a definite plan of action so hopefully you will be given one very soon.

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coppertop · 30/05/2005 23:15

Ask as many questions as you like. With ds2 the help came almost immediately even without the full and definite diagnosis. SALT started within less than a month. We already had a portage visitor, and we had a home visit from the OT within about 6 weeks or so. We are also in touch with the Early Years Inclusion Service ready for when ds2 starts at pre-school/playgroup later this year.

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JAKEJEM · 30/05/2005 23:16

No we haven't had a sensory questionaire yet, they didnt realise DS was as bad until they saw him and now it is a mad rush - he has terrible issues - biggest one is a complete fear of anyone but mum and dad (even Grandma has become the enemy) Just can't believe this is happening. Thanks for all your advice. Just off to bed now before DS or DD get up (!) Hope to chat to you again soon.