Experiences of ASD diagnostic meeting?

[yanny]

I rarely post here so hope you'll excuse me for crashing in!

Tomorrow profs are meeting at 9.30, my meeting is at 10.30 with 2 of them. Been telling myself a label (or not as the case may be) is not important, dd still has the issues regardless, so why am I dreading being told it's not ASD almost as much as if it is? I feel so mixed up...

I felt exactly the same. I had been asking for the dx as I "knew" it was. Therefore I was panicking that they might say it wasn't as then what was the problem - me or my son? Of course no-one wants to get the dx either as it feels so very final and definite.

Hope it goes OK and you get the answer you need. Take care. Here have a cup of tea

It does feel very final. Thanks Ben10 .

Hope all goes smoothly at the meeting tomorrow.
Whatever the result, your splendid dc is every bit as splendid. If it is, remember that 9 out of 10 of us on the autism spectrum can go on to live good lives, thanks to modern understanding and support. Hard work for parents at the moment, but the new SEN Green Paper from the government should help soon.

Good luck. This and the next 6 months are the worst bits but it gets better as you figure out what it all means for your Ds and family an stop fearing the unknown.

amber and star thank you - dd is 12 so it's been a very long time coming. Nervous but looking forward to some closure

Good luck. Lots of mixed feelings.

Go easy on yourself.

Thanks lionheart these replies (and glass of wine ) have given me a bit of a lift

Best of luck for the meeting tomorrow. :)

Best wishes for your meeting tomorrow, hope you manage to get a bit of sleep tonight. :)

Thank you

we are not that far yet. we have been refered though. hope all goes well tomorow.

Best of luck, we've just been put forward for assessment and that was nerve wracking enough, in our area you get referred, they come out and access and speak to you and decide if they think he needs formal assessing, thankfully they said yes because I was feeling similar, worrying what if he doesn't have asd, is it me going mad?! x

Hope it went ok today. Got diagnosis for DS - 11 next month last Thursday.

Felt relief really. Was dreading being told that there wasnt enough for a diagnosis as I felt we would be back again. On the other hand i was afraid I would lose it when told he was ASD, but I didnt

How did it go Yanny :)

Thanks for asking.
Not so well..

Only thing agreed was they couldn't agree on a definitive yes or no so another referral for further assessments. Also suggested neuropsychological testing. I actually don't know if I can face/put dd through any more...

Sorry to hear that, Yanny.

Perhaps after a few days you'll be less overwhelmed by it all.

Sorry to hear that you still haven't got any answers Yanny

Aw Yanny I'm sorry you didn't get a definitive answer.

Once you've accepted that your child has difficulties then it's natural to want a clear label - if only to help your child gain access to the correct support. No one WANTS to be told their child has a life long disability. I thought it'd be like ripping a plaster off, and then when the result was inconclusive that I'd been left in limbo.

DS's diagnosis is "social communication disorder with autistic traits", which has most people going WTF does that mean?

I also sympathise re the further assessments - I'm at the point I feel I'm just going thru the motions with them as it feels like DS has had one too many appointments that have led to not a lot in terms of outcome.

I've vacillitated a lot over the last few years between being very grateful that DS doesn't have a firm ASD diagnosis & total frustration at how much harder it is to access the services and support he so clearly needs without one. It's like we don't belong in any camp or group & like most people it'd be nice to feel we belong somewhere iykwim.

Thanks Ben10

bochead your last sentence sums up just how I feel. Thank you

I'm feeling a bit better today. It's hard not knowing but of course I want the right answers so have to accept that means more assessments. In the manual they follow there are clear guidelines that clearly state professionals are under no pressure to give a dx at this stage (tier 2) - so only the most obvious cases will be dx here. Less obvious/more subtle go onto tier 3 with a different team.

My meeting lasted 2 hours, they don't want to place too much importance on a 'label' and asked what purpose I thought a label would have. Also that some parents want a dx to prove it's not their parenting at fault, then 'I hope you don't feel that way' and praise for what a great mum I am and so on.

By the end they say they understand it must be difficult not knowing and they acknowledge dd's difficulties and do I want to go ahead with referrals or wait and think about it. So I told them to go ahead and I'll think it over while we wait.

Thanks for the support everyone

just wanted to add op ,when my ds was going through all his tests(no dx)
gp told me that if theres a slight doubt they will not label him as once hes dx its for life and will always be on his medical records-eg wont be able to join the army/police/firefighter -ect..
they always hope they will get better or learn different behaviour

Thanks wfrances

Why would someone not be able to join the Police with an AS dx? It isn't an illness

Anyone know what neuropsychological testing involves or what it can show?