So what support does your child get with an ASD diagnosis?

[sleepyhorse]

I have read many comments on the SN board where people have stressed the importance of getting an ASD diagnosis for their child in order to get the help and support from the NHS. Just wondering what that support is apart from SALT?

Ds1 was diagnosed at 24months, so pretty early, but I was then astounded to find that the help on offer consisted of 6 SALT sessions and then an hour's portage fortnightly during term time (with a portage worker who had only ever worked with children with Downs or CP).

He could then go to an ASD specific nursery when he turned 4 (2 years later)

Actually 'horrified' is probably a better word. It was the most depressing moment of my entire life when I realised that they were serious. That's all there was.

Depends on the child.

Well, it depends on the child ideally.

Often it depends on how gobby you are, what area you live in... [cynical]

Theory is they get the support they need based on their level and area(s) of need.

Mine had early years home visting teacher 3 times a week until they started school. (early years team hand over when the child starts f/t school)

when they started nursery (they were diagnosed at 2.5 & 3ish respectively) they had 1:1 support. They have SALT (don't get me started on that [angry), youngest gets SSSEN sessions which they don't do in secondary either , they see the paed annually, they both have full time 1:1 support. I think that's pretty much it but no doubt something will occur to me later

A place at an austism resource unit where they really know there stuff ( he couldnt go without the DX).but other than that nothing.ohhh except 6 monthly visits to see the lovely pead who as absolutely no idea about asd at all.

oh, and don't expect SALT to be much cop unless you are lucky enough to have an autism specialist. Many of the SALTs we've had have been great if your child has a physical problem that affects speech but useless with children with ASD who may be perfectly capable of forming the right sounds to make speech if they chose to, but are unwilling to do so

oh yes, we were offered something called 'opportunity class' which appeared to consist of all children with any form of disability whatsoever, regardless of nature of disability or level of ability, all in one room, playing with sand. Hey, you're disabled, come over here I didn't think much of that.

Maryellen - sorry to hear that. Must say that sounds pretty rubbish. It makes me sick that all the experts bang on about early intervention being crucial and then not follow it through.

I know that they offer early bird but you don't actually need a diagnosis to attend this course, the reason I know this is because I am currently on it and we don't have a diagnosis. Then of course there is ABA but you have to find this yourself and everyone knows its not cheap, hence not an option for many people.

Does anyone know if there is anything else the Nhs offer?

Sorry about typo...meant to say you have to FUND the ABA

OT and few sessions of group SALT and one block of 6 1-2-1. Sadly I gave up on them and took everything in my control and treated everything private, hence DS has improved.

Ah the only positive advantage that dx gave is Statement of course and DS having a place in a mixed learning diff unit attached to mainstream.

And school can get advice from the ASD outreach team.

But I have been told you don't even need a diagnosis to get a statement. You just need to highlight all your child's educational needs and prove (with the support of SALT and nursery/school that your child cannot manage without 1-1 support at school?? I have just applied for my statement and ds doesn't have a diagnosis yet?

oh nothing at all - he would've carried on seeing his SALT, OT & paed regardless of diagnosis or not but whatever they say about needs not diagnosis ime having a diagnosis makes it easier to get DLA (which you then use to fund the support they actually need) & support at school. We've also had quite a lot of funding through Aiming High for nursery support & out of term placements etc

You don't need a dx to get a statement (in theroy) - but you will need a dx to get into an ASD unit, or an ASD school, or for the ASD Outreach team to be involved with school......

(Obviously, that is all LEA dependent....)

Indigo - thanks for telling me that. I have obviously been misinformed then.

We got DLA without using the term asd. Just listed all ds's short comings (felt like such traitor). DLA is the most useful intervention as it is helping pay for lovely nursery and a bit of aba.
All we've had from NHS has been assessments, which is a kick up the backside that we need to change things for ds.

Don't know about statements. IME its important to focus on my dc's specific weaknesses. Asd kids I know are all so incredibly different that a dx may blind people to my boy's needs.

SleepyHorse - of course things could work differently where you live.

Parent Partnership should be able to advise you how things work where you live....

I know here the ASD outreach team does work with undiagnosed kids, and I know in other counties they don't.

I think it will be very hard to get into a specialist ASD unit without an ASD dx.

With a dx you get to increase your chances of a statement. When you get a statement you have the opportunity to appeal it provided you have paid for the evidence to show what your child needs i.e. data protection requests (up to £50 a pop), independent EP, Independent SALT, Independent OT and possibly a therapist in the meantime to demonstrate and produce evidence, not to forget childcare costs whilst you attend 'negotiation meetings'.

Then you can go to tribunal and tell your story and depending on the panel they may or may not read/pay attention to the evidence. You then get your decision which is 'usually' provision better than originally offered but not necessarily what your child needs. If what your child needs IS ordered, you have little control over the quality of the personnel hired to deliver this.

I paint a depressing picture I know, and people can be luckier than me and often are, but I think it is important to know from the outset what it can be like and the costs involved.

For many though, the risk has to be taken because it is their child's only chance.

'oh yes, we were offered something called 'opportunity class' which appeared to consist of all children with any form of disability whatsoever, regardless of nature of disability or level of ability, all in one room, playing with sand. Hey, you're disabled, come over here I didn't think much of that'

And where parents can be sitting ducks for patronising staff that generalise their children's difficulties and teach all them jingle bells in makaton at christmas time and sign them all off as having an hour of SLT each.

I havent got a dx and still fighting........till the bitter end. It takes a hell of a lot of shouting, pleading and tears to get an OT, SALT to actually take notice and help. The actual advice I have had from camhs so far without dx is "try a few social stories, we will let your GP know we are giving you support" Whoop de doo!

School say maybe with a dx they will understand. What they are saying is they will refuse to understand he has a problem other than bad behaviour till they do hear the dx word

DS does have a somewhat proposed statement without dx but unfortunately I think the only reason he got this far was because he turned tables upside down and barricaded himself in a cupboard. That is noticeable bad behaviour in their eyes. He never used to do this at all, he is however now cornered and full of anxiety in a non understanding situation.

With the dx comes the open door to him of the school acknowledging his issues, me having more clout in arguing the contents of the statement actually having the right things in it to help him. AND me on their backs making sure its done to the letter :)

I see you're familiar with it, Gloria

patronising - that's the word I was looking for to describe some of the parent support workers I met on a course.

sleepyhorse - with our ds, we were told we could apply for dla by the pead - that's it.

Indigo is right - here you need the ASD dx to get to the unit where there is specialist help - the music therapist, the weekly Salt, the trained staff, good ratio of adult to children etc. But you need to fight for this.

Oh yes Hecate. Badly taught PECs and dragging my ds screaming into a sensory room he was scared of in order to develop his independence from me are my lasting memories.