Aaargh, on the merry go round again!!!!

[Hopstheduck]

Finally got DS1 in to the Paediatrician for a review aftter two years!

Go in office, new paed reads all notes, he is down as probable ASD. Well, that's news to me! I was told that despite having a ton of autistic traits he didn't fit the criteria for ASD and was probable PDD-NOS.

Anyway discuss for half an hour, then she says she wants to refer to CAHMS and get the ASD formally dx. . Then does a test with four pictures, asks ds1 to tell a story. He tells her what is on the page. She leads him, and he does start to elaborate. So she decides he has got imagination so can't be ASD.

This is after the big circle of him having dyspraxia for three years then getting dx with developmental communication disorder instead.

I jsut want some answers now, and something that I can take to the school and say, yes he has got xyz and you need to do abc and stop pretending he is NT.

The paed says I should apply for a statement, and that he needs one. But can I even get a statement when he is attaining average levels? His biggest problems (aside from the physical issues) are sensory, communication, social. He goes through phases of being utterly miserable because he is so overloaded at school. His OT wants them to do sensory diets, time outs, etc. His paed wants 1:1 so someone can help him understand things that he doesn't get because his brain is wired differently. But do I stand a hope in hell considering academically he is doing 'ok'?

Statements are not just for academic needs; they can also address social and communication needs as well.

All your DS's difficulties could in time impact on his ability to learn, he is feeling overloaded at school already.

IPSEA's website is good re statements and is worth a read www.ipsea.org.uk.

You do not need school's permission to apply for a statement and you can make such an application personally to the LEA.

SEN Code of Practice states:-

7:39 However, academic attainment is not in itself sufficient for LEAs to conclude that a statutory assessment is or is not necessary.
They should be alert, therefore, to significant discrepancies between:

......a child?s attainments in assessments and tests in core subjects of the National Curriculum and the performance expected of the child as indicated by a consensus among those who have taught and observed the child, including their parents, and supported by such standardised tests as can reliably be administered

I think that means that the LEA cannot use average levels as an excuse for not assessing. My DS had level 4s at yr6, they said they would not assess. We appealed and he now has a statement for 20 hours per week. Save a copy of the Code of Practice on your desktop - you may need to refer to it often!

As an aside, isn't PDD-NOS essentially ASD? Ds1 was diagnosed with PDD-NOS at 23ms but I was told that it was ASD in all but name (he was just too yiung to match the full range of diagnostic criteria) and when he was statemented 5 months later it stated that he was on the autistic spectrum.

Ok than you, I read somewhere that there had to be significant delay for a statement so it's good to hear I can apply anyway.

I've been putting it off for years tbh, waiting for dx, banging my head against the wall with the senco, etc.

So should I apply now, or wait until cahms are seeing him? The paed has said she said she will say he needs support in any case.

No idea if pdd nos is essentially asd. I was just told it was an alternative if he didn't meet all the criteria for asd.

Would apply now (don't wait for CAMHS) and use IPSEA's letters on their website if you're wondering what to write. You will need to write to the Chief Education Officer at your LEA and give them six weeks to reply.

Statements can take six months plus to set up anyway so the whole process is both long and protracted.

I would also apply now. School told me to wait - I took advice from a friend who works in LEA school appeals - he said apply straight away, but go back to the school first and tell them that you would like a statement.

Tell school that you will apply yourself if needs be, but you would prefer to work together with the school and you would prefer it if the request for a statement came from them. I did this - 1 week before he left that school in the summer to go to secondary, but they did it and although turned down initially, we appealed and then got the statement.

I don't get on with the school at all :(

I cannot stand them. If i go and tell them I want a statement they are going to say he doesn't need one, simple. It's taken three years to get a ILP, but I still haven't seen it.

My last meeting with the HT seemed to go pretty well, but the ILP never materialised. The meeting was to discuss him going on a residential trip. After lengthly discussions, I went away discussed it with dh, them emailed her to say ds1 was still concerned about sleep issues and I never heard back. Nothing. So he isn't going on that.