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Original poster

Newly diagnosed ASD - anyone else?

73 replies

devilinside · 02/05/2012 12:26

Just got back from the hospital where my five year old son has received an official diagnosis of ASD (they decided not to diagnose him with aspergers as there is still a question mark over his speech development).

No word at the hospital about aspergers no longer being used as a diagnosis - so not sure when that comes into place

OP posts:
UnChartered · 02/05/2012 17:36

hi all

thanks for the kind words and support - DH is home, DD is home and wine has been purchased

Thanks
Ben10NeverAgain · 02/05/2012 18:46

Welcome to the thread Demonata :) Sounds like you need a Brew or a Wine if you've had the ADOS today.

Demonata · 02/05/2012 22:27

Thank you Ben10. I'll take both seeing as how I've told my "D"H to leave tonight because of his affair. (But that belongs on another thread!) Grin

Ben10NeverAgain · 02/05/2012 22:30

Oh demonata. I'm sorry to hear that he has been such a shit.

Acrobat1 · 03/05/2012 06:15

Hi all, I'm an Australian Mum of a 4.5 year old just dx'd Aspergers (apparently that term is still in use here). Always knew my son was quirky and suspected AS but it's still a shock.. Mainly cause he's such a good kid, never meltdowns or tantrums though he can get moody and angry if I interfere his play or thoughts process. Paediatrician didn't seem concerned that he doesn't have meltdowns, he thinks (and so do i) that the problems may come once he's in school with strict expectations and rules etc...

Ben10NeverAgain · 03/05/2012 07:23

Hi Acrobat, Welcome to MNSN Children :)

You are right, it is always a shock I think even when the ASD/AS diagnosis is what you have been pressing for and expecting. Just the other day I was watching a video where a lady was talking and she mentioned that it is a "lifelong condition" and that was enough for me ....

You need to take care of yourself. Have lots of [tea], I guess it might be iced tea there (?) :)

When do children start school in Australia? Do you know what the schools are like for special needs provision?

If you have any questions or just want to moan, have your hand held or whatever just post on the board and someone will be there. I know that we have got a huge amount from this community and hope that you will too :)

Ben10NeverAgain · 03/05/2012 07:24

Sorry that was meant to say have lots of Brew but you get the idea Blush

notactuallyme · 03/05/2012 07:53

Hi, we got the as diagnosis about a month ago. I first saw a paed when he was 6 i think, and now he is 9. in that time though, i have had ot input and salt assessment so do think we have a good picture of him.

Ben - i think you are near me, but different areas as we don't have the 6 week course you do which is apparently brilliant. plus nas aren't running here (kent) at the moment.

i don't really need rl emotional support, just advice on best strategies for stuff, and maybe an insight into his pov on some stuff?

Ben10NeverAgain · 03/05/2012 08:00

Yep, we're Medway and the Daisy Plus course they run is only for parents who live in the Medway Towns.

Kent Autistic Trust are fantastic. Call or email Jo KAT

oohlordylordy · 03/05/2012 08:42

Hi,

We got DX on TUesday eve for DS (3, nearly 4) of High Functioning Autism.

It's not a shock at all, but I feel utterly and completely floored.

I do not understand why. I knew this. I have known this since DS was less than a year. I can help him now. Still scary.

So, just checking in and saying, you are not alone.

notactuallyme · 03/05/2012 09:35

Thanks ben - there is just nothing in kent right now in terms of courses, unfortunately. Weird, aas I too knew, lordy but also felt a a bit weird to actually get iit formally agreed. Relief maybe?

Original poster
devilinside · 03/05/2012 10:04

Ok, had the evening from 'hell' last night, DS didn't fall asleep until gone 11pm, after putting him to bed at 8pm. He kept DD awake all evening too, running into her room, jumping on her bed, screaming at the guinea pigs (in dd's room)

I can cope with most of the other behavoir - except this!

OP posts:
messymama · 03/05/2012 10:06

Hi, another one here. Ds (5 years old) formally diagnosed last week with asd. Really pleased someone has started this thread (too much of a chicken myself!).

UnChartered · 03/05/2012 10:21

morning all

Brew

DD slept pretty well for her, only took an hour for her to settle, i wish i could say the same Sad

welcome to all the 'newbies', this place is awesome

oohlordylordy · 03/05/2012 10:42

Milk no sugar for me please.

lionheart · 03/05/2012 10:59

Another here. Diagnosis back in February (HFA for DS, who is six).

I remember feeling very wobbly and a bit overwhelmed, even though I had a pretty good idea of the outcome. So

Brew Brew Brew all round.

propercheesed · 03/05/2012 12:07

Just started on the rocky road here....GP to CAMHS, CAMHS to EP, Now EP back to CAMHS to begin process of Diagnosis poss Aspergers(I think??) EP didn't say the word just gave me a nod and a wide eyed look while telling me everyone(in respect of DS teacher) carn't be expected to know how to care for a child with ASD??.

Sorry I think I have just been guilty of hi-jacking a thread Blush

theDudesmummy · 03/05/2012 12:15

We got the official NHS diagnosis this week, although had a diagnosis from a private paed already. Still upsetting despite it being totally expected and us wanting to get the diagnostic side of things dusted and move forward. It is never nice to hear "your son is on the autistic spectrum" no matter how much you knew it already. I can't believe how terribly bone-weary tired I suddenly feel. This forum has been a life-saver for me. Wecome to the new people.

UnChartered · 03/05/2012 12:25

bone weary is spot on for me too, theDudesmummy

i'm sooo tired i should be sleeping but can't switch off, yet have no energy or motivation. i'm too knackered to even cry and feel sorry, even for myself!

there are so many things i could be doing - calling various 'teams' to get the support-ball rolling but i Can't Be Arsed.

come on in, propercheesed anyone else fancy another Brew

propercheesed · 03/05/2012 12:38

Oh me please! any chance of a tot of whiskey in there....or is it too early???

UnChartered · 03/05/2012 12:43

if it's virtual whiskey, pour on Grin

you know what's just hit me...wtf do i say to DD?

i was really looking forwards to buying and sharing 'All Cats Have Aspergers' with her - but she doesn't have AS... Sad

AS will soon no longer 'exist'

BiddyPop · 03/05/2012 13:18

We asked about getting checked in Jul '10, started the DX process in Sept last year and finally got the letter in early April after couple of rounds of Connors, early years structured playgroup sessions and ADOS. Ed Psych testing only done last week (had to go private) so waiting on that to develop a plan, but we now at least know "ADHD and highly functioning aspergers".

At least we are now started on meds for ADHD, and we had already started to concentrate on praising the positive behaviour rather than focusing on negatives - as that seems to be having more of an impact with DD. Star charts are GREAT!!

oohlordylordy · 04/05/2012 07:43

Another one here who agrees wholeheartedly with bone weary, sums up how I am feeling too.

Ben10NeverAgain · 04/05/2012 07:55

bone weary checking in

Off to for a Mother and Daughter day spa that my brother bought me as a gift when I was ill in September and have been too ill to do it till now. Hopefully a bit of pampering will make me feel better. Hope everybody has a good day x

Original poster
devilinside · 04/05/2012 14:23

Have fun Ben 10, hope you manage to relax today.

A bit of good news, DS had an assessment with the SALT today and his speech is good (above average for his age) So when he doesn't answer and refuses to talk, it's because of his ASD, rather than a speech delay

OP posts: