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Here some suggested organisations that offer expert advice on SN.

In The Meantime............

(8 Posts)
baboos Tue 09-Aug-11 13:25:00

One of my twin sons had his first app with paed two weeks ago, who was very thorough, professional and likeable too. She ended the meeting stating "proabable Autism", and put us on the long waiting list for the DISCO assessment. All good so far.

This morning the paeds secretary called for some info, and I asked exactly how long was the wait.......approx a year was her reply!! In a years time he will be starting school, after the summer break. She could tell I was shocked and and was quick to assure me that in the meantime my son would still get access to all the help and support he needs. He does has an early years inclusion assessment when they go back to pre-school in September.

Can you please let me know your experiences.......will he indeed get the help and support, or, like most things with the NHS, vary across the country.

I now feel very uneasy, we are certainly not in a position to pay for a private assessment, dh has just been given notice of redundancy. Given that I already question whether I am imagining his issues (first two weeks holiday from pre-school were awful, this week he has been like a different child) I seriously wonder whether during this wait, I keep up the pretence of being in control, when I clearly am not.

IndigoBell Tue 09-Aug-11 14:35:02

Most likely won't get any more support or help with a dx than without. ie he will get bugger all either way.

A dx doesn't really bring any support - it certainly doesn't bring any treatments, therapies or interventions. You might get some leaflets and a recommendation to attend an NAS earlybird course.

What will help is you will know that he has autism.

Some ASD outreach teams will only work with kids who have a dx - some will work with kids pre-diagnosis. But most ASD outreach teams aren't very much help anyway......

It's very much up to you and the school SENCO to make things OK for your DS.

bialystockandbloom Tue 09-Aug-11 14:51:50

Yes, sadly agree with Indigo on this. Ds was dx almost a year ago with ASD. Since then he has had, erm, precisly nothing in the way of support.
No SALT (he was supposed to have a block of social skills playgroups which were cancelled).
No paediatric follow-up.
No practical support whatsoever.
No support in any way about what to do, how to help ds (or us).
No Earlybird course.
The Early Years Intervention officer (whose raison d'etre seemed to be arranging meetings between me and senco) has now signed off our case, and we will not have any outreach support after ds transitions to primary school in September.

Sorry to sound so pessimistic but ime having a dx doesn't do much to actually help - unless you aren't sure yourselves if ds has ASD or not. Probably the best thing you can do is assume he does have it, and treat him accordingly.

Read up on it, look at all the areas he struggles with and try and help with that as much as you can (eg languge, communication, play, interaction, sensory etc). This board may well become your best friend and source of information about what you can do to help your son smile

And on the first day back at nursery, arrange a meeting with the senco/head and talk to them in depth about how he is there, whether he needs support, and if so, what they will do to provide it - eg Early Years Action/Action Plus, which can provide funds for eg 1:1 support if needed. The best thing you can do for ds right now is ensure he has as much support as possible as soon as possible - one thing that is almost universally agreed on is that early intervention gives the best prognosis for progress.

zzzzz Tue 09-Aug-11 15:04:17

Our pead was very clear that even though we don't have a dx that our problems are "educational" rather than "medical". I actually like this take on things as frankly my son is not ill, he has problems communicating. That said I think given your situation I would be pursuing SALT myself and reading every book I could get my hands on.

I agree with above, there really is no "in the meantime", because after dx you will be in exactly the same place but with label. There is no treatment on offer around here anyway that I could find.

baboos Tue 09-Aug-11 21:24:11

Thank you for being so honest, I needed that to get me fired up, but what a shocking and depressing picture you paint.

I think the shock of her saying a year, caught me off guard and having had some time since the call, I have decided that there is definately something amiss with him, and whatever this be, he is still going to need help with some aspects of his education, and from what you are telling me, it's going to be down to me to make this happen, by the way zzzzz, I like that take on things too, clarifies things for me. For the rest of his issues, well again, will just have get myself educated too.

IndigoBell Tue 09-Aug-11 22:05:34

Sorry to sound so depressing. I didn't mean to really. There are loads and loads of things you can do, and the prognosis for your DS is excellent - just you have to do all the work yourself, the NHS won't help you at all.

Why don't you start with this thread (Top 3 treatments for ASD) - by the time you've got to grip with all the acronyms discussed there you'll have learnt a lot.

This board is excellent. Spend lots of time on here. And soon you'll be an expert and have loads of ideas for things you can do.

Good luck. It seems daunting now - but very quickly it won't be.

zzzzz Tue 09-Aug-11 23:18:17

Can I recommend some books? They are not what to do, more other peoples life stories/outcomes.

"Send in the Idiots" by Kamran Nazeer, The true story of a what happened to a class of nursery children who went to a special asd school, written by one of them who tracked them all down when he grew up. The guy who wrote it is a speech writer here in the UK now, [which was a good vibe for dh]. What I really took away from the book is the huge impact parents expectations had on the kids lives.

"Emergence" by Temple Grandin, lots of the cow stuff is a bit Too much information for me but Temple Grandin is fascinating [utube her], and her Mother who was very young and living in an age when basically most Autistics were institutionalised is a lesson for us all.

"Late Talking Children" by Thomas Sowell, I like this book because although most of the kids in it would be described as ASD here in the UK the Author who is the father of an unusual boy is adamant that his real issue is being unable to communicate. A lot of his stuff about kids failing in school because schools are not the right place for them, give me the guts to be a bit of a cow when needed. It has lots of stories of different kids and a fabulous tear jerking description of what it is really ike to have a child going through diagnosis.

Anyway I like them all. I'm sorry if I depressed you. Actually I find it kind of empowering if a little lonely being out there on our own. This is a good board for discussing what you are trying at the moment, what works, what's rubbish, who is driving you potty. Be very aware that the child you have at preschool age is going to change hugely over the next few years. He will develop and change for us ds had no useful language at 3 except his colours, he was able to tell dh and I off for having an argument on Saturday, is reading, potty trained, loveing, silly, and very demanding at 6. I like him, and if he is at home with us for the next 30 years, frankly there are worse things that could happen.

baboos Wed 10-Aug-11 21:14:06

Thanks again.......any advice is welcome, beit practical, reading or otherwise, just really happy to have found this lovely little community of help and support.

Have suprised myself at what I've picked up in just the last few days.

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