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DS got his offical ASD diagnosis today...

(10 Posts)
FlyingFig Thu 11-Oct-12 00:05:24

And apart from the numb, raw feeling I have, even though it was completely expected, the way in which it was delivered has left me and DP a bit bewildered.

Will try to keep it short; last summer, after concerns were raised by school, we sought out help and eventually got a diagnosis of dyspraxia, low muscle tone and hypermobility from CP, who referred us to OT and pyhsio. The community paed at the time (last Nov) also said she suspected ASD (Aspergers) but that CAHMS would have to assess and diagnose, especially as DS scored 31 on his CAST test. We went to CAMHS eventually, after a lot of chasing up by myself, only to be told they now had a limited budget and didn't diagnose ASD anymore, but would refer us back to the CDC, but in the meantime would speak to school and visit DS in school for an observational assessment, but kept hammering the point home they wouldn't be able to 'diagnose'. School got EP on board who did a full and comprehensive assessment, who again detailed DS's 'autistic traits' but said she wasn't qualified to diagnose.

So the waiting game continued; I rang the CDC a few times asking if CAMHS had bounced the referral back; eventually a consultant rang from the CDC to say DS hadn't been forgotten and she'd see him in clinic ASAP (today's date).

So I turned up today and she was basically waiting for us with a diagnosis (despite never meeting DS); apparently she'd had a MDT in September with CAMHS and had read the various reports and they'd all agreed DS has ASD.

Now I don't doubt the diagnosis for a minute, we've suspected it for years but a) it still hurts to have it confirmed and b) I feel that in such a sea of mis-communication and uncertainty for over 18 months, it seems odd that they had an MDT and made a diagnosis without telling me or even school?

Sorry for the rambling post - not sure why I've even posted as we've fought long and hard for diagnosis, but the way she was waiting today to deliver the diagnosis without ever having met DS made the morning feel quite surreal!

We just seem to have gone round the houses for 18 months with no one prepared to diagnose, despite what they 'suspected', yet this Dr who had never clapped eyes on DS was ready and waiting to hand us the diagnosis...

I'm being pathetic, I know blush but it did seem really bizarre today!

FlyingFig Thu 11-Oct-12 00:08:27

I sound like I'm whinging, which I am not, as we've chased this diagnosis for such a long time - we fully accept the diagnosis.

I think I feel sad at the hoops we've had to jump through and also a bit sad at the reality of having our suspension confirmed, just feel numb about the whole thing x

FlyingFig Thu 11-Oct-12 00:10:29

Dr was also reluctant to say 'Aspergers' and just kept saying 'autistic spectrum disorder', which I suspect could be to do with the fact they are doing away with an official 'Aspergers' diagnosis now?

coff33pot Thu 11-Oct-12 00:21:51

No wonder you are bemused by it all x

I do understand the running in circle business and now they have took the wind out of your sails.

Is this woman going to send you a full and DETAILED report? I would ring and request one because you are entitled to it giving not just the DX but what their findings were based on. I would also ring camhs too and ask them for a copy of their minutes of the MDT seeing as it was about your child and any report from their assessment at school if they did one.

Tell them straight you need all this info to help you understand it all and to pas to relevant authorities Rex to get support so a simple "he has x" won't do.

And yes I expect she said asd as opposed to as because of the upcoming change. Ds report says both that he fits criteria for asd and further down he has aspergers.

Be kind to yourself as even though you knew it can still feel so final especially when you were not expecting it to be so quick like that x

AgnesDiPesto Thu 11-Oct-12 07:30:47

You are right to be miffed. When they had the MDT they should have invited you along for the second half so all the professionals could explain the dx. NICE have issued guidance on dx and as coff says you should have got a detailed report.

HotheadPaisan Thu 11-Oct-12 07:48:34

Message withdrawn at poster's request.

FlyingFig Thu 11-Oct-12 10:33:38

Thanks all for your understanding and kind words smile She did waft a piece of paper under my nose and said "This piece of paper has two sides, one showing evidence in favour of a diagnosis and the other side evidence against" and the side 'for' was full and the side 'against' was empty. She said she'd sent a report out in the post and gave me the number of an autism support worker.

It's a relief to know that it perhaps wasn't handled in the correct/offical way, my head was spinning when we left. Not sure what I was expecting, she did say there was no specific test for autism but that DS obviously met the triad of impairments and it was more than 'quirky' behaviour, based on observations by the community paed, CAMHS, and school's/family input.

When I think of the struggles he faces on a daily basis, I agree HotheadPaisan that there's nothing mild about it, so at least his diagnosis will hopefully open up a few doors and at least help to go some way to people understanding DS that little bit more.

Thanks again, this place is an invaluable support smile

coff33pot Thu 11-Oct-12 20:19:46

There is no specific test for autism?

there is the ADOS coupled with the Autism Diagnostic Interview. Conners for ADHD like symptoms and sensory awareness profile to pick out any sensory processing issues.

Along with school observations, EP reports and school advice on how the child is faring.

quite a bit really when you think of it smile

I would still request copies of those minutes an a copy of that pros and cons sided paper too! X

FlyingFig Thu 11-Oct-12 22:08:08

Hi coff33pot, I think by no specific test she meant that the spectrum is wide and varied, and that a one-size fits all test isn't used, I think that's what she meant?

We've been through the sensory profile assessments and he's got significant issues, although not all negative, such as last night when he launched himself at my pyjama bottoms exclaiming 'I'm just so attracted to silk!' [Grin]

FlyingFig Thu 11-Oct-12 22:09:01

Oh and I will definitely chase up that paperwork, school are also keen to read it!

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