ABA programmes

[RexandBen]

We are starting our ABA programme in less than 2 weeks time (yippee!!) for our autistic 2 year old son. I posted a message on the behaviour/dvelopment board ages ago about this but have only just checked back at the responses!

How is your programme going, Davros? Do you use a provider and did you manage to get funding from the LEA? Is anyone else doing ABA or VB? I look forward to hearing from you

We've been running an ABA program for our son for 6 years now, can't believe it! Its been part-time for the last two years. We did use a service provider and we did have LEA funding, not from day one though. VB IS ABA. VB and Lovaas are both types of ABA, e.g. Coke & Pepsi and both types of Cola and, IMHO, there's about the same difference! I strongly believe in Lovaas for a start-up program as I think its important to get certain behaviours established and some structure/organisation going and I like DTT to teach although VB is supposed to use DTT too. DO tell me what you are doing and who with. Have you joined PEACh? Have you been to one of their information days? Well worth it.

Hi Davros thanks for your reply. Yes we have joined PEACh, and I went to one of their parent workshops last month - it was very informative. Yes, I realise that VB is ABA I suppose when I really meant was 'traditional' ABA or Lovaas.

We are doing a VB programme with the consultant Paul Holland. We decided not to go with a provider as it is much cheaper to do it yourself! We were very lucky to get Paul - he is very well respected. We also have our lovely supervisor and 4 tutors (two experienced, currently working on the LEAs own ABA project).

How is your son doing now? Have you had good results?

Sounds like you are well organised. My top tips (for now) would be to get as much hands-on supervision as possible, needs to be at least weekly in regular slots, and don't be pressured or dictated to by your therapists Try to attend team meetings and don't worry if you don't want or can't do formal therapy yourself. In terms of results, I would have to say that our son has done as well as he can, you may have heard the cliche "best outcome" which is really what ABA is all about. Comparing him to where he started he has done wonderfully but he is still non verbal....... but his receptive language is fantastic and he uses a combination of PECs, Makaton, poor vocal, context and gestures expressively. He has lots of stims and his behaviour is often (at least) "unusual". This worries some people newer to ABA as they expect much more but he has made many gains as he was soooooo detached and incapable when we started. Having an intensive program at home certainly makes the parents absorb much of the practice, techniques and theory, whether you like it or not! This helped me personally feel much more confident and able to cope with the unknown and I think it also helped me get to know my son as an individual all over gain after diagnosis. What is your situation with funding from your LEA? Which LEA is it? They will probably tell you they don't fund but it will probably not be true.
Anyway, good luck, hope it goes well

Thanks for the advice Davros. It sounds like your son has done marvelously. As you say, we are just looking for the 'best outcome'. I met a lovely autistic boy last week who also has fragile X syndrome and he has done amazingly well. He was completely written off when he first got diagnosed - now he can sign over 100 words and has loads of receptive language!

Our LEA is East Sussex and we know that they do fund. They had tried to tell us that they'd never heard of ABA (even though they have their own ABA project currently running!). Honestly these people will try ANYTHING to put you off! They have just refused to assess so we are taking them to tribunal at the moment. In the mean time we will be getting private reports done so hopefully they will back down before tribunal.

Was it difficult for you to get funding?

Looking back I can see that getting funding for our program was not really too hard and could have been a lot worse. At the time, of course, we were desperate, worried, scared etc. We did not go to Trubinal and we did not use a solicitor. We requested assessment ourselves not long after our son was 2, on the advice of another parent having been told nothing about statementing by any professionals. Several things were in our favour - our borough had NO provision, our son's young age as it wasn't realistic to send him out of borough, we had a diagnosis from Gillian Baird and a recommendation from her to start a Lovaas program. From our first request to the final statement took a year, mostly due to the delay in professionals producing reports, particularly the psychologist. An LEA is not held responsible for any delay caused this way so it doesn't count in the offical guidelines timetable Most of that year was spent waiting and inactive with sudden short bursts of activity. Our draft statement offered 12.5 hrs of m/s support so we informed the LEA that we were not happy and would take it further. I went through the Draft and picked out each comment and tried to trace it back to any of the contributing reports, including our own which seemed to have been ignored. There were obviously default phrases in there "would benefit from being with other children....." whcih was not included in ANY of the reports and therefore is not allowed to be in the statement! Each point that said, e.g. "needs opportunities to increase exposure to language" etc I just answered with "this is already (or will be) addressed by the program we are running". I went through and put this in over and over and now and then challenged where other parts had come from. I've heard of a child whose statement had the wrong name in parts as they obviously cut and paste certain phrases! We had a meeting then with our Parent Liaison person who was excellent and then got a letter offering full funding! I really thought we were just starting our battle at that point but I think they don't like to go to tribunal as it looks bad on the stats and they had weighed up our chances of winning.
Be warned, in case you don't already know, they may try all sorts of things to delay you getting your Draft Statement with meetings, discussions, visits etc as it is only then that you can appeal to tribunal. Good luck, let me know if I can give you any more info.
Sorry, that was a very long answer to a short question!

Hi Davros, sorry it's taken me so long to reply, we've been away for a few days.

I've seen a refusal to assess letter where they used 3 different names for the child! Its disgraceful and insulting.

We are going to see Gillian Baird (along with Auriol Drew) next month too, so we are keeping our fingers crossed that she will recommend ABA for our son.

Our Early Years Service offers 1 hour/wk of portage style help in 6 wk blocks. Our solicitor told us not to accept this as any improvement our son makes on our programme will be attributed to that. I've got a feeling that Early Years will pull their fingers out and offer more now that they know we will be going to tribunal.

I hope it doesnt take a year for us to get funding - we will run out of money!

Be warned! Gillian Baird does not recommend ABA unless she really genuinely thinks it is the right thing for the individual child. As your son is only 2 I think you've got a good chance. Auriel Drew is meant to be wonderful but I cancelled seeing her as it was a one-off assessment and we weren't at a stage where we needed extra ammo but it may be a good thing for you. I know she has had problems representing someone at tribunal when the panel decided she wasn't qualified to diagnose. Your solicitor will probably know all about it. GOod luck, let us know what happens.

Rex and Ben - I am new to mumsnet but I was really interested in what you and Davros have to say. I've been doing VB for 2 years with my DS and I think it is fantastic - without it, I am not sure where he would be now, but certainly not in a mainstream school and I'm not sure he would be talking at all. He now has about 50 words, and his bad behaviours have all but gone (touch wood). How is your program going??

I am so pleased your DD is doing well Electra. I sometimes think I go on about VB too much, but I feel like I want every mum of an ASD child to find out about it - I think the systems they use in special schools in the UK (eg TEACCH) just don't work for some children. Another mum told me about VB and insisted I do it, despite my ill-informed prejudice against it. I am so grateful to her that I am constantly trying to find other mums to "convert" - as a way of returning the favour I guess!

We started ABA with ds1 when he was 5- a part time programme. He now does VB an hour after school each day (he's 8). We're moving slightly onto other things now, but without VB we wouldn't have been able to do the other things. It hasn't given him any speech at all, but it's given him imitation which is fantastic.

Hmmm I shouldn't say VB really. It's Growing Minds which is more of a mix. It's mainly table work in his case.