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Ds to be reasessed for autism :-(

(17 Posts)
ChopsTheDuck Wed 30-Sep-09 11:51:49

Had physio/OT appointment this morning. As ds had a late night (only half hour but makes all the difference) he was really off on one, and this is the first professional who has seen it. She is very concerned, and although she said he obviously isn't severe, something isn't right.

Now we're being referred back to paed again for assessment, to cahms for assessment and I've been advised to apply for a statement.

I feel miserable about it all. I know it's irrational but I don't want another label for him. Atm, he is down as having dyspraxia, hypermobility syndrome, and social & communication issues.

I do know he has autistic traits, but put those down to dyspraxia, but it is getting more noticeable as he gets older. He is harder and harder to manage, and support would be good. It's jsut really hit me someone else seeing it and saying it, even though we were warned that he may need reassessing at this age.

MoonlightMcKenzie Wed 30-Sep-09 12:27:57

That must be hard, but your ds is the same regarless of label. Being given a dx, isn't the same as being given a disability. If it means my child's needs are better met then I'm quite happy to collect labels tbh, - provided I still feel ultimately in control.

If you feel, on the other hand that the label won't help and you'd really rather not have it, - don't get one.

catkinq Wed 30-Sep-09 13:47:26

As Moonlight said your child will still be the same child - but you could think of it as having one condition not several - ie if he is somewhere on the autistic spectrum then this may explain everything else. I suspect that I coul dhave got dd a dx of dyspraxia and certainly S&C issues and dyslexia and an eating disorder and anxiety and depression etc etc and then I'd have felt that there was "loads wrong" but actually it is (probably) Aspergers and she is just different . My point is that in my mind I see it as just one thing, not a long list so you may find that you feel better with one label then with a list of labels IYSWIM.

debs40 Wed 30-Sep-09 13:59:39

Chops how frustrating for you! This whole process is so vague and nebulous in terms of criteria. My GP first said possible dyspraxia, doctors since have said possbile AS and certainly hypermobility/hypotonia, scd and coordination problems.

What really is the difference between all these labels?

My community paed drew a helpful little venn diagram to show how they all overlap and said it was a really difficult area. In fact she'd been to a conference in London which was supposed to help with suggestions about this but had found that few people had answers to children who lie on the cusp between disorders.

I think you have to focus on the fact, as others have said, that they are what they are, as long as their needs are met, then the label is not important.

AttilaTheMeerkat Wed 30-Sep-09 14:26:18

debs40

I would agree with every single word you have written, particularly your last paragraph.

I have today received a letter from the paed saying that my ds has features that would put him on the autistic spectrum. I knew this already so was not totally surprised and told him so at our last meeting in early summer. I also said too that it does not change who DS is and his needs are currently being met at school.

debs40 Wed 30-Sep-09 14:59:38

Attila - thank you indeed, wise one!

ChopsTheDuck Wed 30-Sep-09 16:32:25

Thanks ladies. smile I do know it doesn't change him and I know it is about his needs being met, I agree wholeheartedly. But for some reason it did still has really knocked me. Originally he was suspected autistic, but the focus over the past year has def been more his physical issues.

Over the past 6 months he has gotten a lot worse and he started usign a wheelchair this summer. We had kind of got our heads round the idea that he has physically disabilities and the social & communication issues were a side effect of that then it feels like a blow to be told that his other problems are more serious and we are back to considering autism again.

I don't know how helpful a label would be to him. I don't think he is being properly supported at school. I don't think they really understand him. It worries me that a label of autism would lower their expectations of him even lower. He is capable, if given the right support and people realise his brain is just wired differently!

meltedmarsbars Wed 30-Sep-09 16:40:29

Hopefully school will see things the same as you - that with the proper support he is very capable, no matter what label he has?

Sometimes the labels are easier for us to use to explain to other people what the issues are iyswim?

(are you the dahl recipe queen?)

Simplistica Wed 30-Sep-09 16:48:37

I saw this book 'Kids in the Syndrome Mix of ADHD, LD, Asperger’s, Tourettes, Bipolar, and More. Martin L Kutscher' I don't know if it covers dyspraxia as well (and more being a bit vague LOL) but it's available to borrow for free from the Cerebra postallibrary, so maybe worth a punt?

debs40 Wed 30-Sep-09 16:50:51

Chops - I completely understand as I am in sort of the same situation regards school. I am not at all confident they understand DS and I kind of worry that the more strident I get in articulating his needs, the lower the academic expectations of him will be.

I have been so busy sorting out little issues and making sure he is 'happy' I have not bothered with the normal mum stuff like chasing teachers to change his books etc. He comes home with books that our far below his reading level and I'm just not sure why.

Sometimes it feels that I'm always nagging though!

ChopsTheDuck Wed 30-Sep-09 17:19:22

will try that book, thanks.

Have you gotten any further with the school debs? I have been following your threads.

Actually the Physio is familiar with the senco, so I mgiht be able to ask her what her experiences are with the school and an autism dx.

Yep the dhal queen <preen> grin
My dp is indian, so I learned to cook lots from his family, plus plenty of practice.

debs40 Wed 30-Sep-09 17:37:13

I've asked for a meeting and sent a sort of 'getting to know DS' summary to them together with a couple of basic suggestions.

DS has been off ill all week so we'll see how we go when he gets back.

It does get me down - I feel like keeping him at home forever!

ChopsTheDuck Wed 30-Sep-09 19:25:12

I know how you feel - I'm sure ds would learn more at home!

meltedmarsbars Wed 30-Sep-09 20:34:15

Oh no! I would go mad with dd2 at home forever!!! Long live school!

ChopsTheDuck Wed 30-Sep-09 20:54:54

oh I prob would too! I dropped him off 40 mins before lunch break and buggered off to the pub for lunch! blushgrin

I like the idea in principle, but no way I could cope with him 25/7

ChopsTheDuck Wed 30-Sep-09 20:55:27

25?!

too much wine I think!

meltedmarsbars Wed 30-Sep-09 20:59:08

No, it just feels like 25 hours!

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