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!!

It's bullshit. Out expert on ASD paed had never heard about sensory needs or OT for children she diagnosed.

It's not that they don't know, it's that they don't want to get involved in a parents battle for provision so find it better to ignore.

Why don't you send them some reading?

And I'm sorry to hear about your dx, and er - well done!

I am sure he really did not know, he was genuinely baffled by my question and subsequent discussion. To her credit, the SALT who was also there at the assessment new all about it, and I could see she was embarrassed by his lack of knowledge.

knew not new!

Oh well definaty send him some reading then. Shameful!

We are (on advice from others on MN) not exactly trumpeting to the authorties yet that we are starting ABA, so don't want to say too much about it yet. It may not be possible to get funding for it later (although I have heard that our LEA is now not funding any new home programmes, is that legal?) but I am applying for statement anyway and plan to see how far we can get.

Quite a minefield really and adds to the stress. And then you realise that the professionals in the field don't even know anything themselves....and of course that nothing of any benefit is likely to come from the NHS in any case (a pity really, I work for the NHS too and see areas of very good practice, this just does not appear to be one of them).

We had exactly the same situation. We'd started ABA three weeks before ds was diagnosed. We asked the paed what he thought of ABA as an intervention and he looked blank.

But I don't think he knew much about any actual intervention tbh. What is shocking is that the people who diagnose this condition don't seem to have any knowledge of what families can actually do to help their children. We got a bunch of NAS leaflets thrown at us, and that was it.

Statementing all very well actually not even that sometimes but what about a) pre-school children who might not go to school for two years, and b) what about outside school, after school, weekends, holidays, um the rest of their life?

Sorry for your ds's dx OP. But you have imo done absolutely the best thing by starting to help him now.

Diagnosis and intervention are two completely different issues. It's important to know that someone who does one may know nothing of the other. It's usually the case actually.

Btw there is a huge amount of info in past threads about ABA and statementing (I went through this myself) - search for posts by agnesdipesto, starlightmckenzie and wetaugust to start with and you'll find some.

Best way to get ABA into statement is to demonstrate unequivocably that ds has made measurable and significant progress with it (compared to no progress under other measures). You'll need to collect thorough data, and also back-up from Ed Psych and probably SALT.

Join the ABA Yahoo group if you haven't done so already, some very useful advice there too.

although I have heard that our LEA is now not funding any new home programmes, is that legal?

Who told you that? It's against the SEN Code of Practice for a LEA to have a blanket policy of any kind. In reality of course they will do but this can be challenged. And also I was told (by our LEA early intervention officer) that my LEA "never funded ABA" which is untrue - my consultant worked with two families in the borough who had funding, and we got ABA written into our statement. They just don't always call it ABA!

Diagnosis and intervention are two completely different issues. It's important to know that someone who does one may know nothing of the other. It's usually the case actually.

I wonder how many other areas of medicine (which a paed presumably comes under broadly?) this would apply to? Imagine an oncologist for example, who diagnosed but had no idea what to actually do to help?

Makes me livid actually. ASD falls between health and education depts and no-one takes responsibility for actually doing anything to help.

Oh I completely agree.
What the hell is the point of being able to tell someone what is wrong without then doing something about it.

It is endemic throguhout SEN however.
I suggest parents start asking 'So what can we, or rather you do about it then?'

The silence will be deafening.

Diagnosing problems is the easy bit.
When it comes to addressing them, people mysteriously vanish into the ether or promise to 'monitor, review liaise and....reassess'.

Monitor, review, liase, write a report, hold a meeting, refer, consult with, work together, offer a multi-disciplinary approach, support, file, consider, send to panel, set up a programme, provide funding.

SEN bingo!

For the 18 months after ds was dx before he started school, we had an early intervention officer. The sum total of her 'early intervention' was:

1. ceremonially handing over the Family File - an empty lever arch folder with file dividers. Ta dah!

1. Minuting that she'd done so.

1. Sending me a print-out about 'schemas' (irrelevant) after a 30-second conversation once about the fact that ds scribbled rather than drew pictures.

Magnificent use of resources.

Moondog the problem is is that usually when parents are given the diagnosis they are so shell-shocked (and if anything like us, twizzled by spending hours in an airless room with no refreshment while the assessment was going on), and devastated by having their worst fears confirmed, that asking something like doesn't occur to them.

We were also naive enough to think that we would be contacted at some point with what to do next. Silly us.

Yes, giving parents a copy of the Early Support file is seen as intervention. There is nothing in it except blank pages for parents to fill in about their child. This 'gift' then gets minutes and meetings are held about whether the family has been given said file.

When it is handed over you receive a speech about it solving all your problems wrt appointments and not having to repeat information but in the following two years no-one will ask to look in it and you'll instead file all your tribunal documents in it instead. Perhaps that's why you can only get it online now!

I think it's one thing for a paediatrician of some sort to not know much about intervention. s/he has after all a great many other issues and conditions to diagnose.
It's totelly unacceptable however in the world of education or education that masquerades as health. I have serious problems with s/lt being based in the NHS for example with regard to children with autism or language disorders. It's an educational issue (as confirmed by Lacashire Judgement).

Also NHSD people like to swagger and say that they are not going to be bossed around by LEAs.

None of this benefits the child in question of course.
Cut out any dead wood-thaT'S MY take on it.

Moondog I suppose you could say fair enough (marginally) for a general paediatrician but this was a specialist autism clinic (well an "autism clinic" I would say now, in inverted commas) FFS. I am a medical professional myself and this really shocked me. Making a diagnosis with no idea of the tretaments available, for me borders on the negligent, I am afraid.

Well we know now we will get no help or support from anyone basically. It's up to us and here we go. Yes we got handed some pamphlets and files and that seemed to be the total "inmtervention" as far as I could tell. Phhh.

Bialy it is Haringey Autism (charitable support organisation in local area) who say that out LEA no longer funds ABA home programmes. I have grave doubts myself about whether this could be legal and will certainly be looking into this. What a rigmarole however.

Sorry about typos, definitely needed tonight.

Well bloody hell in that case, it is utterly unacceptable.

In fairness, it might be a terminology / acronym thing where 'ABA' is unfamiliar. EIBI might work, but I doubt it, actually you want to lead your witness into writing down if they actually do think the proposed intervention is a sensible approach. A name is less important, it's the content which matters:

'do you think we ought to consider giving her some structured, reinforced practice which we can fine-tune according to her progress?' 'I heard that using behaviouralist principles as a teaching method helps children with LD learn, might they help dd with asd?' 'would some one to one work be useful?' 'is she likely to just pick the social and communication skills up without extra input?

Sometimes people know about and might even have used the concepts (which they may or may not call by the various proper names eg selective reinforcement, extinction, shaping, chaining etc) but have a weird reaction to what they see as giving blind support for any interventions, whether fluffy or scientific in nature. And 'ABA-lite-with-no-name' is sort of mainstream common-sense to old-style general community paediatricians, think of a lolly after a jab, sleep training advice, bell & pad clinics for wet beds etc

You can guarantee the same guy will have been asked about stem cells, chelating toxins, raw camel milk and swimming with dolphins, possibly all within the last month: so any reflex answer will tend to be a no

Yes, great points Maria.

Thanks for the feedback. I do think the guy was well-meaning and he was into PECS, so clearly was aware of the underlying behavioural principles (I had told him we have just been on the PECS two day course and he did say that he had seen very good results with PECS in his previous job). I still however find it unacceptable that he had never even heard the term ABA. I am still considering whether to make some kind of complaint, or just to write to him in a fairly non-challenging way with some information so I can at least try and get the idea of behavioural analysis into his report for future reference.

Well, as of now we have all our tutors ready to go and the programme starts at the end of May. I am certainly not going to accept that the LEA won't fnd it at all, but that is a battle for a bit further down the road I think...Right now the energy is on getting the programme uo and running.

DON'T complain. This man hates acronyms and off the shelf interventions: but from scientific first principles and personal experience he loves PECs: he is your natural ally. When he sees your dc doing well, he will almost certainly back you up that she needs to continue with the approach which is helping.

If you formally complain and say 'he ought to know about ABA', he will feel tgreatened by you, the whole organisation might end up getting a half-day anti-aba brainwashing session run by someone who hasn't a clue.

Train him to understand what you are doing, a common-sense, intensive catch-up programme with input and guidance from a psychology post-graduate who specialises in teaching children with asd.

DON'T call it ABA, at least until you know what the chances of your LA resisting attempts to give your child what you think will help most. The 'special treatment, costs far more than we ought to fund, whose care shall we cut to pay for it, the parents are so pushy and the other autistic children don't get all this, you know' line can be powerful.

Obviously you call it ABA, he can call it a chocolate teapot so long as in the next letter he lists the crucial ingredients and says he thinks it contributed to the (fingers crossed) unexpected big progress she shows.

Maria that is very helpful and reasoned advice, thanks. I will take it!