Awaiting ASD diagnosis, fed up and want to take control. Any advice on ABA would be of tremendous help.....

[Cheekychip]

As the title says, we are still waiting for ds to be given a diagnosis. He is 26 months old and I've known since he was 15 months old that he is on the spectrum.
He was seen by a paediatrician at 19months old and I got the 'wait and see' response and told he would be reassessed in 6months. Well that reassessment is nowhere in sight as they are 'behind'. Plus we are moving counties in the summer so we'll join the back of the queue there too!
We have occasional support from SALT and weekly 1hr portage.
But it's dawned on me that I need to take control here as ds is not getting the input he needs and I'm a keen believer in early intervention.

So where do I start? I've some old threads so I'm not sure how up to date that information is. ABA is cropping up a lot and I'm thinking this is something we need to try.

Could anyone recommend an ABA consultant? It's tricky because of our move in the summer. We are currently in SW London and will be moving to Leicestershire.
Also, vp or lovaas. Ds is 26 months non-verbal, naps 2-3hrs in the afternoons. SALT tried PECS with him but no joy.
I'm thinking that I'd do the therapy once trained as there's no way we can afford loads of tutor hours but I also look after dd (his twin) so probably not that practical. I could possibly get their gran to look after dd so that I can focus on ds.

I feel like ds is being let down by the system and I want to do the best for him that we can.

Any advice would be much appreciated

I was considering paying privately for a diagnosis but I was unsure what difference that would make. Perhaps it would help get some Caudwell funding.

The evidence building for tribunal is quite daunting. I'm hoping the ABA consultant we go with will guide us with this. Any tips on anything we can do now to prepare would be great.

It's really good that your daughter has fully funded ABA mannish, it's such a pity that they make it so hard to get to that point.

Also good to hear that your ds is making good gains with ABA too roastchicken

This interested me today, it's the same story over and over. When is something going to done about this?
www.theguardian.com/commentisfree/2012/may/20/children-special-needs-reform-rush

Only just seen your post Meir as I didn't notice the second page

I think I understand what your saying. DS has learning difficulties and the is the core of my concern. I often remind myself that some of the difficulties are just him being a toddler too. For example the line is blurred when trying to distinguish what is him being a pain of a toddler at meal times and him just not coping with his sensory problems.

As far a the therapy is concerned he needs to be motivated and feel the pay out. I can't wait to get started now

Keep hassling the nhs first, before deciding to pay out £££. The correct diagnosis is useful, but it doesn't necessarily unlock much practical assistance. You may need that £££ to actually 'do' something to help him.

It's perfectly reasonable to make a fuss to get the NHS service which they said your DS needed. Private paediatric assessments are pretty similar to nhs ones. In my experience, the quality difference is more obvious for things like OT and SLT-, as the nhs ones usually just don't have the time to do a thorough assessment. And ASD might be only a small part of their work.

Yes, I am going to need to spend wisely and maximise the usefulness of anything we decided to pay for.

The NICE guidlines don't really help me in terms of forming a complaint. Are there any other guidlines out there that I could refer to?

Also, should I be looking at a particular type of ABA for my boy as he's non verbal and still quite young?

Thanks

They told you he'd be seen when he turned 2. That was Christmas

I looked back at the report and it said he'd be seen in six months to review his development profile............I called today and was told that he will be seen in April but NOT for diagnosis, just another review

The waiting list for the diagnostic team is 14 months so we're looking at the back end of the year. I was so angry as no one told me this last year. I was a bit disappointed at the time that he'd have to wait until he was 2, let alone nearly 3!
I used to work for the NHS and I was always really upfront about long waiting times and encouraged people to complain to commissioners as resources weren't meeting needs.

Anyway, I have complained to anybody and everybody today, right to the top of services.
It may not make a difference but I feel better that I've complained.

I have contacted Marianne but she hasn't got back to me so I'm thinking of going with PEACH as at least then when we relocate changing consultants may not be so bad as they have the same training and paper work etc.