Waiting for a diagnosis..

[Ree24]

Hiya, a few weeks ago, i posted a thread on this forum regardning my 4 1/2 yr old son and his behavioural issues and possibility of Aspergers syndrome. (His paternal half brother has this too) Anyway.. we had the peadatrics appointment with Dr Yemula, 1 of Britains leading peadatric consultants, who has agreed my son is showing some signs but needs me and the school to complete 2 questionaires before a diagnosis can be made.
How long is this likely 2 take?
How likely is a diagnosis being made?
Is humming continuously, often oblivious.. a sign of aspergers and should i tell Dr Yemula, as it was something i forgot 2 mention to him...?
Also.. why did he check my son's anus and genitals?

I am so confused and baffled. Please help.
I want a diagnosis now

I am doing this completely alone which is very very hard.

xxx

If he's just doing some questionnaires, I doubt it'll take long. Here, they do a test called the ADOS, and there's a v long waiting list - some children wait years and most wait many months. It is frustrating, but taking their time to diagnose properly is better than rushing and making an incorrect dx.

It's impossible to tell how likely it is that a dx will be made without knowing your son, but if you trust the paed, then trust that they'll make the right judgement.

Haven't a clue about the genital thing - v bizarre!

Sorry it's so hard. I was where you are a year ago, and it does get easier in many ways.

Good luck with it all and try not to get obsessive about researching it all like I did!

Sorry - just meant don't stay up into the small hours reading and reading - rest and be nice to yourself!

Sweetheart I totally understand, and I'm sure everyone else will too.
Thing is a dx is hard to come by, for anything.
The reason the doctor probably checked physical attributes (I can't be sure, DD has dyspraxia, not aspergers, but still the same spectrum it seems) is to rule out any other problems, for example, with DD they were checking for cerebral palsy.

Thanks guys that means so much 2 me

I guess it's just a waiting game

the next appointment with the pead isn't for 6-8 mths?!!

I also didn't tell the pead that my son has this thing where he clears his throat almost continously at home? and it can become a bit annoying so i ask him 2 stop, but seem's oblivious sometimes 2 the fact he is doing it? i ask him what it is and he says "i got a cough" but he has been doing this for at least 4-6 mths? i never really thought anymore of it until recently.. he doesn't have a cough?! he never actually coughs?? He has no cold etc?

And then the humming thing he does a lot.. should i tell the pead these things?

He seems 2 love music too, it's so sweet when he dances and sings lol

Waiting for a diagnosis can be so hard!
I would tell the paed about the humming and the throat clearing, as they could be significant. (ds does both and it can drive me nearly to distraction!)
The physical checks which surprised you may have been to search for physical markers (such as large ears and genitals) of Fragile X -a genetic disorder.

Thanks Mags. Yeah it is driving me potty! I just want a diagnosis so i can, well we all can, just get on with things and how 2 deal with it all. Needing some1 2 talk 2 is a big thing 4 me, i have no1 x

sorry to hear what your going through

if you feel you need to inform of the things you forgot then phone them and also send a letter to them but copy it so they have it down on paper also

my son was dx with high functioning autism when he was 3 and it was most stressful time for me if it wasnt for the lovely ladies on here i would ahve been so lost

as for the hummin g etc its best yoyu ignore that and not bring it to light as the more anxious he becomes he may do it more

ignoring is ahrd but they do thsi without realsing so its not there fault drives me mad at times my ds recites things but doesnt realise and does this hiccup sound but its not i have to bite my tongue as if i mention it it upsets himas he doesnt know his doing it

big hugs to you and really hope you get all the support you need on here as i did xx and still do xx

could you ask if theres any sn groups near you we have a great one we go to and they have all sorts of things to support my ds and i

i know your ds at school but mine holds things throughout school holidays for the older children as well

its good to talk to other mums who understand you as well in rl

Agree with Bubbla that trying to stop the humming (except by subtle means/ distraction) makes it worse for my son too. Background music makes it tolerable for me (and ds tends to be tuneful it is a monotone durge otherwise!). I have found no way to reduce throat clearing, but as that can be very antisocial (bloodcurddling!) we do send him to the bathroom or outside and give him water!
We had to wait many years for a definitive diagnosis for ds(sevLD/ADHD/ASD) so just got on with treating him as a child with learning disabilities, and probably on the spectrum. The biggest problem was school and getting funding for support - which can be harder without a Dx. I can identify with needing to know and wanting support.
Agree asking about SN play clubs is useful. Local asd support groups (some have telephone support/information lines) can be a useful sourse of local information. It does not matter that you don't yet have a dx - most will welcome parents without.
(hugs)

Hmm i didn't realise there was so much help even if we don't get a diagnosis. The nurse said, infront of the pead that my son needs his own room due 2 how he is 2. But if he isn't diagnosed does this mean i wil ljust have 2 deal with how he is? God this is all so confusing! So much!

There is another thing.. My sons obsession with gloves and hats.. but he wont wear them if i put them on him?Yet he will put them on in the houe and takes them 2 bed wit him etc...

i found it useful in the months before i went for a follow up assessment to have a pad that i could jot down things as they came up. i took these along to the assessment (it was speech and language therapist) and she found them useful too.

it's so difficult to remember everything when you go along to an assessment, especially because it can be so emotional, so writing it all down gives you something to look back on.

i also think it's useful to write about progress as well as problems - it helps to see that your lo is developing. only problem as givemesleep says, it can become a bit obsessive, writing everything down.

Thanks

I ill d0 the progress thing 2 x

God i feel so confused! i just want this diagnosis!