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?

Opportunity for what exactly?

Opportunity to shove all children with any form of SN in one room and claim the families are receiving 'support'.

DS was dx aged 3.5 we had his statement when he was 3. He now attends special school, but only had 2 1/2 hours provision a week up until then To access Earlybird in this area you need a confirmed dx - we are doing it now through school.
We were referred to portage but never got to the top of the waiting list! We did get a couple of SALT appointments.
I found it a very frustrating time before ds started school - as you say everything shouts EARLY INTERVENTION but you don't get any!!! As for social services and the disability team - don't get me started!!!

and to perpetuate stereotypes, don't forget that children with autism are....children with autism do... children with autism feel...

We went once and told them to stick it

Early intervention here means the LA creating a file on you and adding your name to a couple of people's case load lists, who you will in fact, never see but who will be receiving funding on your behalf.

Ah, I went too often. I wouldn't put up with that shite now but then i believed.......

HA! I know what you mean.

I can't say the word 'expert' without pissing myself laughing these days

Hi Gloria and Hecate - are you on about earlybird? I found the first couple of weeks quite helpful as they explained in depth what autism was and how autistic people see the world etc, found it quite interesting. But must say after that have found it pretty rubbish where we have sat there with scissors, pics and a laminater making PECS which my son doesn't respond to so waste of time for me. I have not been for the last 2 weeks and just phoned in sick as couldn't face more dull sessions. I have 2 weeks left of the course. I guess I should make an appearance just to keep the pediatrician happy seeing as she was the one who referred me.

No Sleepyhorse. Earlybird can be worth the effort but it dies depend on the person delivering it and how much prior knowledge you have.

No. It's a thing called 'Opportunity Class', and it really is just every child in the area who has any sort of disability at all, shoved in a room with a few toys and some people who think they know everything there is to know about everything.

No support at all infact less.
He can only do 2 days of school a week, as opposed to 5.

dd1 got put ona lot of waiting lists as a result of dx.

we already had Portage (I self-referred)

she had no SALT at all until we threatened to pull out of the Earlybird course (one of the reasons given for no SALT was that Earlybird was our support), and then miraculously got home sessions, one 2 hour session a fortnight. which were worse than useless, and the SALT tried to get dd1 to choose between 2 non-preferred activities, and ignored all her attempts at proper communication. the Earlybird course told us nothing we didn't already know (and a lot of stuff which was not actually true wrt statements, ABA, school places etc)

she got put on a waiting list for a totally inappropriate pre-school place; the place only came up once she was school age

no OT (wasn't available at all for children with ASD, regardless of need).

a a result of this spectacular inaction, we did it all ourselves. ABA home programme. sourced an ASD pre-school placement, which was rubbish, but proved our point (that dd1 needed ABA)

pushed for and got (after 3 years - yep, the 6 month timeframe really works!) a statement. dd1 is now at her second ABA school and her progress has been astounding.

but none of it has come from the nhs. at all.

Sounds dreadful. What is the point of that then??

We had Portage via a Specialist Teacher
SALT (and the More Than Words course)
1-2-1 at Preschool.

We still havent had OT, we are waiting to hear after the Paed refered us again

We live in Surrey and DD has 'adequate' support. We have had to supplement with heaps of private intervention. DD was offered Portage at 22 months, speech therapy and OT as well. This was all before diagnosis - and its self referral in Surrey for young kids for SALT and OT so you don't have to wait to see a GP/Paed.

After she was diagnosed (at 2 years 9 months) with ASD she received more OT which was mostly sensory integration therapy but they cut our SALT the instant they knew she was going to a private ASD nursery which was run by a SALT and SALT assistants. Nice.

Before she got her statement she had 1:1 the whole time she was at nursery and it was paid for by Surrey Early Years.

She has a statement now (we got that quite easily, very lucky I guess) and she now attends a speech and language class twice a week run by the LEA (a small group with 5 other children). The OT has stopped as she doesn't really need it anymore thank goodness.

I have a good relationship with Surrey at the moment and can't complain as I think the provision is OK. I know she will NEVER get the SALT provision she needs as they just don't have the capacity and trained staff to deliver it so we will have to fund that privately. There is no point in fighting it or taking them to tribunal as there isn't anyone who can provide what we want for our DD. Within the boundaries of what they can offer and what we can take for our DD they are giving her what she needs. Thankfully she is doing very well and I would say is probably now on the milder side of the spectrum and doing well in a mainstream setting. That's mostly because of us though, not Surrey ;-)

Eloise - sounds like The only way is Surrey!!! I have never heard of a nursery giving a child full time 1-1 before having a statement. My ds gets a few mins everyday if that and they then have the cheek to moan to me that he throws things and puts pebbles in his mouth!

Just wanted to say that actually you don't necessarily need a dx to access ASD outreach 'support'. In our case, the Early Years Outreach officer was involved months before we had a dx - the nursery got her involved. As Indigo says though, perhaps it differs according to borough/LA.

In any case, our ASD outreach 'input' essentially meant nothing more than taking minutes at meetings, and on one occasion ceremoniously handing over the 'Family File' = an empty folder with file dividers in it, telling me how helpful it would be to my life. The handover was not only included in the minutes of that meeting but was pretty much the main event of that meeting

I'm afraid we've had nothing really either, in over a year since dx. All we've had is two SALT assessments (one of those was for the statutory assessment for his statement in any case). And a series of four group 'social skills' sessions, where they spend more time showing them the laminated timetable for the session than actually doing anything in the session itself. Oh, and showing them a laminated picture of ears, saying and signing "good listening" in makaton (to a group of very verbal, HF kids).

Sigh.

I suppose though, that if you have an official dx you may be taken more seriously by a school.

Why is this so bad do you think?
Is it the same in every county, or are we back to postcodes again - we're in Sussex, and all SEN is rubbish, with the varient only on degrees of rubbish-ness!

You have a dx, and then it's off into the wilderness with you - but hey here's a course, as you say run by patronising, lecturing busy bodies who have no bloody idea, other than to make you feel worthless, and that they would make a better parent than any of us.

Its that or pay for help - and as we all know, after giving birth to our SEN child[ren] out popped an all expenses paid voucher for all the care and help they need, but wont actually get.

I don't understand why Mumsnet with all their lobbing power with the media haven't jumped on this as a worthy cause - maybe it's because disability isn't glam enough for them.
Just a look at these threads is enough to tell anyone that the state of the system is worse than poor, and it's up to the parent to fight, fight , fight or nothing, ever gets done - because our children will always be second best when it comes to the LA, true inclusion is a myth in most schools, despite what they tell us - it's only the parents who care enough to bring about change.

Some of are doing something. PM AppropriatelyTrained if you want to play a small part. We're in double figures as a team and gathering momentum.

DS had full-time TA support cobbled together when he was just on SA+ and before he got a diagnosis (again, he only got that support when he started regularly scaling a twelve ft. fence to escape school ), but the real professional expertise wasnt accessed and the genuine understanding of his issues wasn't there until he was diagnosed and statemented.

I'm not saying it's all rosy now, but he has got a place in a specialist ASD unit where the class sizes are small and the staff are trained. He wouldn't have got this provision without a diagnosis.

Its exhausting, though, isn't it? The whole bloody thing. I feel like we have been fighting for years to get DS the support he needs and deserves...

he already had a paed & physio due to existing CP & gdd DX. gdd was changed to autism & ld.
He had a split preschool placement, sn & ms
1 yr of weekly OT preschool sessions
CDC monthly sessions & nursery support.
Now he has full time 1to1 at school
Sensory OT therapy & home & school programme
Motor OT support
Regular psych input for DS2 & us.
For us the the ASD dx has really opened the way to good support for ds2.

SALT has been crap, promised but so far - nothing!

sleepyhorse Wed 23-Nov-11 20:52:30
Sounds dreadful. What is the point of that then??

was that to me? (I'm not sure ) if so - yes, it was dreadful. what's the point? Well, probably -

part - 'We must do Something, this is Something, let's do this.' without anyone actually thinking what they are doing and what they want to achieve.

Part - this is a cheap way of being seen to do something (being seen to do something is far more important than actually doing something useful)

and partly good old fashioned stupidity and ignorance. You are all disabled therefore you are all the same and have the same needs and we can treat you all the same way.

Hecate, that's an astute summary.

Yes, and this is good ole Herts, and a further way of delaying a parent getting effective privision because it is firstly another waiting list to go on and then something that you 'have to give a chance'.

thanks moondog. I feared it sounded somewhat bitter

Gloria - oh yes. Best thing we ever did for our children was to get the hell out of Hertfordshire. Until I had something to compare it with, I never realised just how vile the attitude there is towards children with disabilities and their parents and how much they truly hate having to do anything for them at all.

Yes, that box-ticking mentality prevails in the London borough I live in. Everything too little too late. For example the OT who assessed my daughter and then posted me some photocopied pages from a text book. We waited about six months for that intervention.

My dd is 9 now, and there is even less on offer. Her Autism only school is pretty good, though, thankfully.