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Original poster

FINAL DIAGNOSIS FOR BONKERZ DS.................................

78 replies

bonkerz · 21/08/2008 16:42

DS has AUTISTIC SPECTRUM DISORDER!!!!!

ADOS test DS scored highly in all 3 areas, in 2 areas he scored double the cut off and in the thrid area he scored one point above the cut off.

Will come back later and update.

OP posts:
TotalChaos · 27/08/2008 17:05

hope the panel comes back with a sensible suggestion

dustystar · 27/08/2008 17:48

Thats good news about the dx bonkerz I hope the LEA finally do something useful.

Ds got his dx today too - he has AS, ADHD and anxiety.

Original poster
bonkerz · 27/08/2008 18:47

dusty thats great news (you know what i mean!) Gonna be a bugger filling out forms now though isnt it......

now i will have to write DS has

ATYPICAL AUTISM
OPPOSITIONAL DEFIANT DISORER
SEVERE ANXIETY DISORDER
BEHAVIOURAL/SOCIAL/EMOTIONAL DELAY!

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dustystar · 27/08/2008 18:57

lol bonkerz i know what you mean Its a relief though to finally have it made official. One less battle.

daisy5678 · 27/08/2008 19:41

Atypical? Is that what they've said? I would have thought it was straightforward AS/ HFA given how highly he scored on the ADOS. Atypical is usually when they don't meet thresholds, that or they label it PDD.

daisy5678 · 27/08/2008 19:42

Atypical? Is that what they've said? I would have thought it was straightforward AS/ HFA given how highly he scored on the ADOS. Atypical is usually when they don't meet thresholds, that or they label it PDD.

magso · 27/08/2008 21:37

Hope the LEA acts in your Ds interest (at last) now you have the Dx! Well done for your persistance!! Whilst a dx is a difficult time - at least it helps others (hopefully) recognise our kids needs.
Ds (8) also got a dx of autism some months back to add the M/SLD and ADHD -no suprise but I'm still feeling fragile about it - you know how it is! I identify with all those emotions you listed earlier. The one that suprises me is how angry I (still) feel at the neglectful/harmful ms ed system!
I hope your ds gets more enlightened support from the system now.

Original poster
bonkerz · 27/08/2008 22:06

givemesleep, he actually has Autistic Spectrum Disorder and it is labelled as that in the report because he scored highly on the ADOS test but missed one point on the ADI-R (different cut offs apparently!), the reason i have been told ATYPICAL AUTISM should go on his statement is they want to further assess DS for SEGMANTIC PRAGMATIC DISORDER (sp?) Apparently if he has that then the ASD will not stand but the atypical will, if he doesnt have SPD then ASD will stand.

OP posts:
Original poster
bonkerz · 27/08/2008 22:24

sorry dont know if thats clear!

EITHER DS HAS

ATYPICAL AUTISM
SEGMANTIC PRAGMATIC DISORDER
OPPOSITIONAL DEFIANT DISORER
SEVERE ANXIETY DISORDER
BEHAVIOURAL/SOCIAL/EMOTIONAL DELAY!

Or DS has

AUTISTIC SPECTRUM DISORDER
OPPOSITIONAL DEFIANT DISORER
SEVERE ANXIETY DISORDER
BEHAVIOURAL/SOCIAL/EMOTIONAL DELAY!

either way he is still autisitc and from NAS site it looks like SPD is usually linked with ASD anyway but i think how severe DSs ASD is depends on if he has SPD!

OP posts:
daisy5678 · 28/08/2008 00:01

Oh goodness!

Where's the behavioural/social/ emotional delay come from - never heard of that!

Ohhh, I know what you mean J's Statement has all kinds of bizarrities on it. But for you, the most important one is the autism as it means the LEA are SCREWED! [GRIN] And, more importantly, your son will get in somewhere that will help HIM.

Original poster
bonkerz · 28/08/2008 11:18

the behavioural /social/emotional delay was what doctor diagnosed when he did the ODD DX. That was the part i said was actually a symptom of ASD not a separate problem, fuly expect it to be taken off when i see lead clinician TBH as i think i have proven its all part of the ASD.

OP posts:
daisy5678 · 28/08/2008 13:06

I understand now!
How have the holidays been overall?

Is B going to the PRU next week until Tribunal?

Original poster
bonkerz · 28/08/2008 17:27

B will be back at PRU yes although they were supposed to come out today to have a chat about future help and teacher etc and havent turned up!

Holidays been hard work but have had respite help from social services, 12 hours a week with childminder which has been brill!

Will be glad to get him back to school even if it is the PRU. Panel meet on monday to discuss possible unit and special schools so will see how much they want to avoid appeal then i suppose. Should know Tuesday at some point!

OP posts:
daisy5678 · 28/08/2008 18:08

Fingers crossed!

Will SS continue offering respite in term time?

Troutpout · 28/08/2008 18:40

That's really good news Bonkerz
We also finally got a dx for ds a few weeks back. He has a dx of Aspergers.
The final write up of it all came today

The lea have also agreed to give him funding (£7,500) for 6 months after which time they will 'review' him.

Original poster
bonkerz · 28/08/2008 18:58

have today contacted social services to ask for long term help. The playscheme DS attended over the summer was amazing and have offered him playscheme on a staurday but we cannot really afford it right now so im hoping we will get some more respite help from SS.

OP posts:
magso · 28/08/2008 21:31

Perhaps SS could fund the Sat playscheme as well as other respite? Ds attended a sn Sat club (once a month) and some of the children from another borough were funded by SS. It was brilliant (and great for ds confidence) but unfortunatly it was only a pilot scheme and has sadly stopped!
Hope all goes well on Monday at panel. Ds is a much less anxious child for his change of school.

Original poster
bonkerz · 01/09/2008 14:41

have just spoken to SS who reckon they could fund the saturday play scheme for DS. this will really help TBH.
Panel meets today and we will be told tomorrow the outcome of this meeting.
taxi driver picked up DS today for his first day back at the PRU and i told him DS had the DX, he said he wasnt surprised and proceeded to stick up a finger to the LEA!!!!! Also spoke to old school about Dss DX and the secretary there was so pleased and pointed out that a lesser person would not have fought so hard and she also asked if she could pass my name onto another parent who is struggling in a similar situation!
Now just got to figure out if the fact that to get into a autistic unit you have to have ASD AND MLD is a blanket policy which could be discrimanatory to children with ASD who are gifted!

OP posts:
magso · 01/09/2008 19:02

Fingers crossed for you all Bonkerz! Good news about the Saturday club (and ours is restarting after halfterm Hoorah!!)

magso · 02/09/2008 12:37

(Whispers) Any news Bonkerz?

Original poster
bonkerz · 02/09/2008 12:46

WE WON!!!!!!!!!!!!!!!!!

Panel have agreed to DS going to the local priory and this will be the school for him till it is reviewed at secondary school age.

Im in shock will write back later.

OP posts:
BriocheDoree · 02/09/2008 12:59

BRILLIANT!!!
Open a bottle of something tonight and toast all your hard work!
Well done for fighting your cause for so long.

twocutedarlings · 02/09/2008 13:30

WOW!!!!

I bet you cant believe your battle is over

twocutedarlings · 02/09/2008 13:30

WOW!!!!

I bet you cant believe your battle is over

daisy5678 · 02/09/2008 13:39

so so pleased!