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Paed visit today - probable ASD DX

19 replies

Ben10isthespawnofthedevil · 11/05/2011 17:37

We saw the Paed today.

1 1/2 hour visit where we were told that it is probable that DS is on the spectrum. We still have to go through the multi-disciplinary assessment but the Paed is going to call the school and advise them of her suspicions so that they can start treating him as if he does have ASD.

My mum didn't believe that there was any way that he was on the spectrum and she taught primary school for 30 years! She was at the appointment and is now under no illusions!

I am really pleased and relieved with the probable DX on top of dyspraxia and SPD and I can't wait to go and shove it in the SENCO's face advise the school tomorrow! Grin

Thanks for all of your help ladies. Again, it is really appreciated Smile

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EllenJaneisnotmyname · 11/05/2011 17:50

Hi, Ben10. That's great (sort of!) I hope the school get their act together. Smile

BialystockandBloom · 11/05/2011 17:57

Well done, great you can now get relevant help - and even if he goes through the multi-disciplinary and comes out without a dx of ASD the support should remain the same, based on need not dx.

Was the SENCO opposed to getting a dx, or didn't agree with you? Would it be because it would mean more work? Wink

I think the diagnostic criteria is so different to how it was 10/20 years ago that children wouldn't even have been assessed then for ASD, let alone diagnosed, so I guess not that surprising for your mum not to believe it (and considering she's his grandparent and therefore biased as required by the job description Grin).

Ben10isthespawnofthedevil · 11/05/2011 18:06

The SENCO has a son with dyspraxia so I think that she decided as soon as the school referred him to the CDC for motor skills issues what his problems were. She has been nowhere to be seen since I sent in the NHS OT report in February re motor problems and definitely nowhere to be seen following my private DX of dyspraxia and SPD as well as my report from the BO! This is the school that told me that you get the same support with or without a statement. He is being discussed at the In School Review with the EP on Monday so this is perfect timing.

The school hasn't even implemented the writing slope, long loop scissors etc that the NHS OT advised in February let alone helped him with his social skills or classroom work. He doesn't cause problems really to anyone except himself apart from needing to be the one to give the right answer all the time so I think that they thought that they would leave him to flounder, under achieve and wander around on his own in the playground.

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mumslife · 11/05/2011 21:06

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LeninGrad · 11/05/2011 21:12

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Ben10isthespawnofthedevil · 11/05/2011 21:19

Thanks Lenin! The Paed was really fantastic today and managed to get so much information out of us that pointed her in the right direction - stuff that I hadn't even realised was a problem despite my pages and pages of notes. Hope you strike lucky with yours.

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LeninGrad · 11/05/2011 21:42

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Ben10isthespawnofthedevil · 12/05/2011 05:04

Hi Lenin

Couldn't sleep as too much going through my mind! I have been puzzling over DS for months and making lists of "symptoms" but things that I hadn't ever realised were things like:

Could you go and pick DS up from school and tell him that you were going to go to the shops without preparing him first? I had no idea that I couldn't do that but then immediately thought back to last week when I turned up at school and saw his new glasses halfway down his nose and realised that I had never got them adjusted. When I told him that we were going to go, it was an instant meltdown outside school (we live 3 doors away). All he wanted to do was to go home and watch cartoons as he was expecting to do. I had to bribe him with McDonalds to get him to get in the car.

His sleeping problems extended well beyond his only friend who is quite severely autistic (noticably so) stopping somewhere between 3 and 4.

His speech was more delayed than I thought having looked through his nursery EYFS records and at 2.6 was only joining together 2 or 3 words.

His eye contact is poor. I never ever noticed this. He was talking to her but looking away. When we turn up at my parents who we see at least 3 times a week, he hides away to start with and this is the same with all of our family. The deputy head commented a month ago that it was the first time that DS had looked at her and talked to her. He is in Year 1.

My mum was talking about how he wrote stories at home whereas at school his output is either minimal or rushed. I then realised that although he will write 12 page stories, they are all about superheroes ie Batman hit the joker and the joker hit him back. It is all mimicking cartoons and comics.

He now will not dress up in fancy dress costumes but used to be obsessed (I realise this now) with having costumes. She asked what he did in the costumes, did he act out the characters? No, he just wore the costumes!

He does not play in an imaginative way. He only plays with toys in the way that he has seen in real life. ie bakugan has to be played with as per the cartoon, batman as per the cartoon, cars don't get played with, duplo is always just a tower or I have to build the small lego (he doesn't have the fine motor control) exactly as per the instructions and it is then just put in the box and that is it.

I think it was a DISCO interview she did which was absolutely superb in making my mum and I think more around it. There was a lot of questioning about what he did when he was a toddler which was really hard to remember of course as he is nearly 6.

I feel that she will be really supportive on an ongoing basis and my friend whose son is autistic happens to have the same paed confirms that she really is brilliant. She had read the pages and pages of OT & vision therapy reports and my letters prior to me coming in in addition to the questionnaires from me and the school. It really is a breath of fresh air as I now have a supportive paed, private OT and NHS behavioural optometrist and is in such stark comparison to the support that DS/ us have had from the SENCO and class teacher. However I do have the family and pupil support worker on my side and on the plus side, the SENCO retires next year Grin

Sorry for the huge essay......... great to get it all down!

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Ben10isthespawnofthedevil · 12/05/2011 09:41

I officially hate the SENCO. Angry

Went in as she hadn't called me back after my email requesting to meet for a chat that I sent last Thursday. Told her about the Paed's suspicions that DS had an ASD. Her answer was "well, yes, lots of children have that".

I am not sure that she realises that even if we are actively seeking a Dx that actually being validated in your thoughts that there is something is actually quite devasting to come to terms with.

I am so mad Angry. I am now waiting for the Family Support worker to call me so that I can rant about the SENCO.

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LeninGrad · 12/05/2011 09:43

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LeninGrad · 12/05/2011 09:45

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EllenJaneisnotmyname · 12/05/2011 15:05

LeninGrad, I've heard 1 in a hundred, too. There are only 200 children in a one form entry primary school, so that's about 2 in the whole school. Sounds about right.

How are you doing, Ben10? You sounded so upbeat about the DX that I don't think anyone has offered (((hugs))) or Brew . They ought to do a [tissues] emoticon, also. You are right, no matter how much you have been expecting it and wanting it, even, it's still a bloody painful moment.

Ben10isthespawnofthedevil · 12/05/2011 15:17

Thanks Lenin and EllenJane.

I think yesterday I was on a euphoric high as I KNEW there was something else other than the dyspraxia and SPD and felt like I had been proved right - which is a bit mad Blush.

We have a 350 child school so the stupid woman is hugely wrong then to say that loads of children have it.

I woke up this morning at 1.30am with pain due to my still undiagnosed neck/shoulder/arm/ hand problem and then my head was suddenly full with it all so have been awake ever since. I keep having a few blue moments about it.

However what is helpful is that I helped my friend through the DX of her son and she is now there for me, talking about respite etc. She is taking me to the local autistic children's coffee morning tomorrow Grin. I can have RL Brew.

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EllenJaneisnotmyname · 12/05/2011 15:50

That is great, Ben10. As good as virtual Brew is nothing beats a RL chat with someone who understands. And that 1 in a hundred includes all the unDXed people, as well. Stupid SENCo woman.

pigletmania · 12/05/2011 19:23

I am in the same boat as you Ben10 my dd has possible ASD, but awaiting a multidisciplinary team meeting in September. good luck with it all Smile

LeninGrad · 12/05/2011 19:56

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CinnamonPretzel · 13/05/2011 15:49

Great news {{Ben10}} Brew

Ben10isthespawnofthedevil · 13/05/2011 15:55

Went to my ASD coffee morning this morning. It was great and so welcoming.

It has really made me see even more that his behaviours are autistic as talking to the other ladies with children with HFA or AS was just like a mirror image.

They offer both parents and children's activities so looks like it will be a great life line.

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LeninGrad · 13/05/2011 17:48

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