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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 12:27

me - got a letter today

how are you? is there anyone there with you now?

Brew

have put the wine away

Original poster
devilinside · 02/05/2012 12:33

On the coffee, had to have a blood test myself, so have been nil-by-mouth all morning (caffeine withdrawal headache finally easing)

I'm fine, DP's just gone off to work, we have been expecting it (there wasn't much doubt in my head). Just pleased that we can move forward now in getting extra support etc.

How old is your DC

OP posts:
UnChartered · 02/05/2012 12:45

DD is 4.10yrs - how long has your assessment process taken?

Original poster
devilinside · 02/05/2012 13:00

The school flagged up some problems just before Xmas. EP was called in, she suspected ASD and wrote a report for our GP.

GP referral just after Xmas,. Assessment with Paed back in March, then further assessment today (Ados maybe? they checked his speech and social communication /imagination by playing lots of games and looking through books together)

She gave me the ASD diagnosis as soon as today's assessment was finished.

How long for your DD?

OP posts:
UnChartered · 02/05/2012 13:13

we 1st went to our GP in October last year - but i'd tried to get the HV and then school nurse involved (to no avail) before that

in the 1st instance her teacher didn't see what we were, but he's coming round a lot more now, she's very much 'under the radar' and is doing very well academically. we had a SALT assessment done by referral from our GP (who has been fabulous) and she's flagged up a 4yr difference in DD literal understanding and language use.

Ben10NeverAgain · 02/05/2012 13:15

Hi Devilinside

DS (6.11 yrs) was dxed with "an Autism Spectrum Disorder (asperger's syndrome)" last month. Our paed said that she doesn't like just giving a dx of AS as people then tend to see that as mild and that the child won't be affected by it.

Your dx was very quick :) Ours took 15 months.

Ben10NeverAgain · 02/05/2012 13:16

Brew or Biscuit anyone?

UnChartered · 02/05/2012 13:17

{hugs} Ben

hello

Ben10NeverAgain · 02/05/2012 13:24

I'm struggling with the ups and down of his behaviour at the moment. Last night he was so good, helping with the dishwasher, playing games etc. This morning, hitting, screaming and kicking

Saw the paed yesterday. She is going to refer us to Autism Outreach to get the school to listen, OT for sensory issues and acute paediatrics/dietician to look into poss gluten/coeliac intolerance. She was outraged that AO/school and OT haven't done anything while the assessment was going on. It is not a surprise that the stress of it all really pushed me to my limits seeing as I have been off sick and having surgeries for the entire time of the assessment.

It really is ridiculous that there are such discrepancies in the time taken for dx nationwide. It is not fair and not right. These children are struggling and no action taken due to the delays :(

Sorry. that was meant to be short! Blush

UnChartered · 02/05/2012 13:27

i spoke to the OT yesterday, she has only just got around to looking at DD sensory questionnaire...we sent it back in Jan Sad

Ben10NeverAgain · 02/05/2012 13:30
Angry
Original poster
devilinside · 02/05/2012 13:32

Yes, I can't fault the DX process - very speedy, although I think it helped that he is in Year 1.

I don't think his problems were really obvious in nursery / reception, as he is a quiet, reasonably placid child.

I must admit, I did always suspect he had ADHD, but never thought for a moment it was asd . Now it's bloomin' obvious and I can see it it lots of other family members too (we also have a few cases of DXd classic autism in the wider family)

OP posts:
Ben10NeverAgain · 02/05/2012 13:39

No-one put any of Ds's behaviours down to ASD up till last year. My mum was a primary school teacher, he went to full time day nursery from being small. As his behaviour at school only really affects him and his learning ie he doesn't hurt anyone.

You seem very calm Devil. I have days of calm and days of being down.

Original poster
devilinside · 02/05/2012 13:44

Sorry you are both strugglingSad it really is a postcode lottery isn't it.

I'm feeling a bit 'so what happens now' DS already gets extra support at school and is attending emotional literacy sessions. but I feel that we parents need some support now, his bedtimes are getting horrific - he refuses to go to sleep, plus he's learnt some aggressive behavoir from DD , who takes absolute delight in winding him up. Also,he has the most horrendous meltdowns when we remove him from his 'current' fixation, usually some item in a shop Blush

OP posts:
Ben10NeverAgain · 02/05/2012 13:49

The NAS do the Help! course for parent of children newly diagnosed with ASD.

Our LA do their own 6 week course. It apparently is very good. You could call up your council and see what they offer?

Ben10NeverAgain · 02/05/2012 13:51

I have had some luck with this light for bedtimes. It is very calming. It was a recommendation from here.

Original poster
devilinside · 02/05/2012 14:19

Thanks Ben 10, that light looks brilliant, will put one on order!

OP posts:
UnChartered · 02/05/2012 14:23

just off the phone from the Consultant - that was our (badly worded) official dx

so i can truthfully say 'yes' now

Ben10NeverAgain · 02/05/2012 14:28

You OK??

UnChartered · 02/05/2012 14:30

i don't know. i'm crying

HotheadPaisan · 02/05/2012 14:38

This reply has been deleted

Message withdrawn at poster's request.

flowwithit · 02/05/2012 15:46

Oh dear just have a good cry it's what you need to do to release all the stress of assessment and dx. Hope you start feeling better soon. Smile

Ineedalife · 02/05/2012 16:19

Hope you are ok unchartered, it is ok to cry but just remember that your Dd is still the same amazing little girl she has always been and the dx will help people to help her.

Good luck to you and to devilSmile.

We are a little ahead of you, Dd3 got her dx in september 11 but it took 3.5 years to get there.

Be kind to yourselves and eat plently of chocolate Grin.

Demonata · 02/05/2012 16:24

DS(6) had his ADOS today looking at Aspergers. The CAMHS lady (psychologist?) said that she needed to meet with all the others on the autistic panel to discuss DS, preferably this month, maybe next month. Got another SALT test to do before then though.

His results so far have been

SALT (age 4): no problems
Cognitive test: Spikey profile consistent with autistic spectrum, ADHD ruled out.
OT verdict (incl school visits): Sensory issues in 6 areas, 1 probable (most pronounced areas are visual, auditory and movement)
ADI & Connors Test (home and school): Possible Autistic spectrum, ADHD ruled out.

So I'm still waiting.

She did say he was a "polite lovely boy" after the ADOS so he was on his best behaviour!

flowwithit · 02/05/2012 17:02

Thanks for light link ben10.Smile
My Ds can only sleep with light on and takes ages to get to sleep too so I have just reserved one of the lights to put on a timer for him. I think he will like it.