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KarenT

Bad news day

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Hi Chaps. Sorry I haven't been around much lately - I've just returned from two weeks in the internet wilderness when I lost my online connection, and I don't recommend it at all. Lots of catching up to do on the forum, and life generally, so bear with me.

 

Had some bad news yesterday. I rang the hospital to chase up J?s diagnosis and was told (unofficially) that the assessment has concluded that there is insufficient evidence to diagnose either Asperger?s or Autism, in fact nothing concrete whatsoever. It will be discussed with me in full detail at a meeting, if the psychiatrist ever gets her finger out and invites me to one (the diagnosis has been available for nearly three weeks and nobody ?officially? has told me about it yet). Apparently they will recommend that we wait another year then apply to have J reassessed ? given that the assessment itself takes best part of a year that means another TWO YEARS of this without any help being offered at all.

 

On top of that, we will be unlikely to access the National Autistic Society?s services as they prefer their places to be taken by families of diagnosed children ? although it?s possible that we may get a place it?s unlikely. In short, what we have to do is wait until J's symptoms become more obvious (in other words, until he falls apart completely) so that the ?professionals? can get a better look at what the problems are.

 

I feel like I?ve had my guts ripped out. This is the last thing we were prepared for ? I wouldn?t have been surprised to end up with a non-specific autism diagnosis, but this just means no way forward. Seriously thinking about asking for a second opinion, and if that?s not possible we may consider a private assessment ? it?ll cost an arm and a leg but hell, I?ve got a spare one of each.

 

As if that wasn?t bad enough, J came out of school yesterday whacking his ?friend? with his coat, and when the friend?s mother stepped in between them to intervene he started laying into her as well. The mother was furious, the child distraught, and J hadn?t a clue what he?d done wrong. I?ve persuaded the mother to complain to the teacher about it ? if nobody does then his behaviour will continue to go unchecked. This is at least the third such incident in the last few weeks just outside the school door, in full view of the teacher, yet nobody seems to want to acknowledge that it?s happening. And that?s in addition to all the aggressive/violent incidents J?s told me about himself on the yard, indeed relates to me with great pride, about who he?s ?biffed? and who he?s split to the teacher about etc. He seems to revel in hurting other people and then getting them into trouble, and no amount of telling from me seems to make any difference. The problem is that although we?re taking him to behaviour skills classes and autistic fun clubs working with social interaction, and of course reinforcing right from wrong all the time at home, nobody seems to be doing the same thing for the six hours a day he?s in school, so he?s getting mixed messages about what he is and isn?t allowed to do. He?s at his first Project Group session (behaviour class) today and was very nervous on the way there ? God knows what will come out of school tonight.

 

Today is his birthday and it seems to be going well, so far! The practical jokes kit has gone down a storm and the house is full of fake dog turds and plastic vomit (I have to maintain the same level of disgust every single time I fall for the trick) and no doubt we?ll be having spider ice cubes in our drinks at tea time.

 

Hope you're all OK.

 

Karen

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Hi Karen,

 

Glad to see you back with us. Sorry to hear your news, I first suspected my son was Autistic when he was just three years old.

 

We went back to the school year after year asking them for help but it wasn't until my son accused a school teacher (the SEN!) of bullying him when he was 8 that things finally moved forwards.

 

How old is your son (sorry can't remember) - AS seems to take on big changes between 7 and 9 years and 12 and 14 years when it becomes a lot more evident as they're always getting into trouble at school.

 

Can you ask the school to go back to hospital and put in their concerns that if something isn't sorted now he will have all kinds of problems when he gets to high school without a dx?

 

Keep strong, Daisy

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Ah Daisy - school is yet another issue! They have their heads firmly in the sand and I think we're in a bit of a Catch 22 situation now - the school won't accept J has problems without a dx and the psych won't dx without evidence of the problems.

 

J's 7 and 'acceptable' in a classroom situation - the problem stems from teachers assuming he'll mature like everyone else will without taking into account his obvious difficulties in unstructured situations.

 

I have a meeting tomorrow with my Barnardo's support group coordinator, who is very knowledgeable and supportive. Hopefully she'll be able to point me in the right direction to tackle this properly.

 

This has probably been asked before, but where in Geordieland are you? I'm in Gateshead, Low Fell to be exact.

 

Karen

x

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Hi Karen, welcome back >:D<<'> , sorry :( the dx did,nt go well.Has a salt, OT, or anyone else having any input with your son, could they push for a 2nd assessment or referral elsewhere?...............Sorry it,s been bad news, take care Suzex.

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Hi karen -

Sorry to hear your woes... All this *********** sitting on the fence is so, SO frustrating... >:D<<'>

 

Have fun with the truds and vomit - if only they were ALWAYS the plastic variety, eh? ;)

L&P

BD

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Really sorry to hear about this Karen, sounds like an absolute nightmare.

 

I do hope he's had a good birthday tho and that tomorrow brings a brighter day.

 

I would keep hassling them for a full explaination, you deserve answers after all you have been through, not just being fobbed off for another year.

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