ASD – what support should we be getting?

[Liliuk]

Hi Everyone,
My wonderful little boy is in the process of being diagnosed with ASD.
To cut a long story short, he was first seen by developmental paediatrician at 18 months advising us of severe developmental delay. He saw him again 2 times up till now (he is now 34 months) and the last time he saw him, told us I quote ?ASD, not even high functioning otherwise he would do more. He will never go to a normal school?. All we got from NHS is 2 blocks of 6 sessions of speech therapy in the last 16 months (he is non verbal although makes a lot of sounds). I find it outrageous; it is almost like he wrote him off. He has referred him to see the Children development team, but I don?t know who they are or what they do.
I work 3 days/week, the rest he goes to mainstream nursery. But they are struggling to get any support too. Could you share your experience with me with the support we should get? Sorry for the long post and thanks to you all!

Oh, poor you. I'm afraid there is no 'should' about it, but you might like to consider applying for a statutory assessment. That usually gives the professionals a kick up the bum.

I would also, if at all possible, take him for a private diagnosis.

Thank you for the suggestions. We have gone for private assessment with renowned clinical psychologist in the field at 18months who recognized ASD signs. Totally snubbed by the pediatrician then?I will look into statutory assessment...don't know what this is :-)

You need to look at the IPSEA website for the statutory assessment process, and maybe call them.

What I meant was can you go private to get a diagnosis. In young children there is often no reason to get 100 different people involved and take years. If you can buy yourself a short-cut it can mean faster access to provision and resources.

Thank you V much for your reply. It is starting to make sense now. I wish I had shared within a forum before?have felt really isolated so far! Thanks again

Liliuk Honestly, there are plenty of people to help here for even the littlest of questions.

There is quite a bit 'out there' but it isn't all easily accessible unless you know how. Most of us here either know how or are in the process of finding out.

Dx and statutory assessment are both pretty key though.

You might also want to look into applying for Disability Living Allowance if you haven't got it already.

I can see that now! For the first time in many months, I have an idea of what to do next. I had heard of the statementing process, but did not know we could initiate the process. Thank you!

Link to IPSEA's website:-

www.ipsea.org.uk

Use the model letters on there to apply for a Statement. You need to write to the Chief Education Officer at your LEA and give them six weeks to reply. If they say no you can and should appeal their decision.

Would also suggest you apply for DLA as well.

Will do - have already DLA

liliuk You can initiate a statutory assessment yourself (and should) but be wary of some professionals that might put you off. It is a bit of a paperwork nightmare and the process itself demands more accountability and resources.

This is a management issue and not yours however, but you need to be aware that some professionals would really rather you didn't apply.

Thanks for warning me. I can see the process will be painful, but why are they so reluctant? I may be so naive but I don't see why they should have a problem with it? I have already prepared my letter to SEN, and will discuss this at length with Nursery who have requested support from Early Years Team but did not go anywhere.

'I may be so naive but I don't see why they should have a problem with it?'

You're not naive, but you are as yet uninitiated. As always it is political. As always it is about money. As always it has nothing much to do with the people on the ground that are genuinely trying to help you and your ds, but they too are sold the party line and often believe in it.

hi liliuk.
don't have many words of wisdom as am going through same myself with ds and seem to be struggling too with the early years panel and access to funding. am just starting to apply for statutory assessment. as ds starts school next year and will not cope as he can't in nursery/pre school. has your ds seen an educational psychologist? that can help in the process.
do you have any local support groups? this board and a local group i've found have helped me so much lately.
which county are you in if you don't mind me asking? some lea's are better than others at providing support. i'm in gloucestershire and not impressed so far.

Hi! So unfair, when they should be aware that early intervention could make a difference. My ds has seen a clinical psychologist but not an educational psyc. I have received this AM a confirmation for visit from the "development team", so another step, which hopefully will unlock resources (but I would request statutory report regardless).
I am in Buckinghamshire. Early year panel have promised loads, but not delivered??Am also so disappointed, have even considered moving out of the county, but as I can see wouldn't necessary help.
My ds can cope in mainstream nursery but I don't think it will be long before he won't (because of the pupil ratio to carers going up). I I don't go to support group but should try I think, because it is hard to be isolated.