NHS assessment and lack of knowledge about ABA

[theDudesmummy]

We have just returned from the appointment with the NHS consultant in which our DS has been diagnosed as ASD. This was no surprise to us as we has already had a diagnosis from a private consultant. In the time between that and now we have actually gone ahead and started all the wheels in motion to set up a home ABA programme, as we were not prepared to wait for the very slow NHS diagnostic process. We have a consultant, we have tutors lined up and it's all starting next month.

It was not exactly pleasant to sit and hear again "your son is autistic", although of course it was what we knew, and wanted confirmed by the NHS. (I guess at the back of your mind you always think maybe someone has made a terrible mistake and it's all OK).

Anyway, what surprised /shocked me the most was that the consultant had never even HEARD of ABA. After he said about the dagnosis we asked him about treatment options (of course I already knew what we are going to do, whatever anyone else says, anyway but wanted his opinion on this as a supposed expert). He waffled on about Earlybird groups and parent support and so I asked him directly for his opinion about ABA and ABA home programmes. He said "what is ABA".

!!!!!!!!!!!!!!!!!

I don't know whether to laugh or cry. this is supposedly an expert in this field and he has never heard of the one and only evidence-based treatment for the condition. He might disagree with it, I know not everyone is into ABA, but FGS how can he not have even heard of it!!!

Sorry about the long post but WTF!!

Funding is not necessarily something for later on (if you can deal with thinking about it now on top of everything else). Ask on the ABA yahoo group about people who got funding for ABA for preschool aged children. There is a guy on there whose name I recognised recently as having lived in the next street while I was growing up.

I contacted him and he explained how he bludgeoned his LEA into submission and won funding (term time only, which he was irritated about) for a full-time ABA home programme for his DS just as he turned 3. This was in Richmond not Haringey but I guess it can be done.

I have already made an application for an assessment for a statement but have been turned down. (This was prior to the NHS diagnosis although I did tell them I already had a private diagnosis). They said however that they will potentially reconsider their opinion once he has been seen by their educational psychologist, so I am waiting for that appointment before making any more moves with the LEA.

From what I can see, they are going to have to agree to a statement sooner or later, DS is non-verbal, has significant behavioural problems (screams non-stop and bangs his head on the floor when any demand of any kind is placed on him, even just to come here) and there is no way he is not going to need a lot of special help of one kind or another when he gets to school age (unless he takes the Catherine Maurice route and miraculously becomes non-autistic after ABA!).

Haringey LEA have quite a positive history of funding some home programmes but the support group Haringey Autism have now put advice on their website that the LEA are not funding any new programmes, as I said, so it looks like it is going to be an uphill battle at every stage...

Well, you're way ahead of me anyway, you're doing brilliantly. My DS sounds similar although would be/seem unaware of any demands rather than have a screaming tantrum about it.

Do you have to wait for an LEA Ed Psych or can you get a private one? Are there timescales you need to be wary of re appealing their refusal to do a statutory assessment (if that's what it was)?

I am waiting for DS' statement to come through the letter box any day (he is nearly 4). God knows what I should do with it for the best. No doubt I will be back on asking for advice.

Well, they did not say they refused point blank, they said they were not going to do it at this stage but were prepared to reconsider after further assessment. I think I will wait and see when their EP appt comes through.

Hello @theDudesmummy. I came across your page by accident. Forgive me if I use the wrong abbreviations I am new on mumsnet. DS has autism diagnosis, we have worked with SALT and are now thinking of trying ABA. He has a EHCP. Any tips on how we could start the programme. What was your experience? Thanks in advance!

Hi there, wow, this is such an old thread of mine and so much has happened since then!

I would strongly recommend you do ABA, it was amazing for us. My DS was on an intensive home/school ABA programme for seven years. He was, and still is, non-verbal, but through the ABA programme was able to learn to communicate by text-to-speech, he now has an above-average use of language on cognitive testing , despite being completely non-verbal. He lost his (severe) self-harming behaviours completely (that took a long time but we made it), and he is able to do many many things that I am quite sure he never would have without ABA.

I would certainly recommend you start by finding a good ABA consultant. We used Sean Rhodes, he is basically a god to our family. (Even though DS is no longer on the programme, we still get Sean to come and see him once term to advise school, well, before lockdown we did).

I am happy to answer any questions you may have, you can PM me if you like....

Hello theDudesmummy
I have a 2.5yr old boy who is presenting signs of autism but no diagnosis yet. He is completely non-verbal. I want to start Aba with him but simply dont know how to setup. Sorry i am very new to this and any guidance from expert parents like you would be much appreciated!its encouraging to know about your son's progress.
Did you do home based programme with consultants and tutors. How many hours/week etc etc.
TIA

Hi, Great that your son is better now. 7 years ABA. Did you pay all or did you manage to get LA found?