ADOS Results Meeting - no professionals involved have heard of ABA....

[PoopyFingers]

Can anyone give me guidance on the results meeting for ADOS?

DS1 (4.5) had this in September, at which I was present. He didn't "perform" well at this, and did exhibit several typical ASD behaviours (turning head away and refusing to play with puzzles he didn't like, and getting upset when given dolls and furniture to play with etc)

Afterwards, I asked the Dev Paed and SALT who were both present what they think of ABA therapy. Paed shook her head, hasn't heard of it however SALT said that she knows nothing about it, but I should not do ABA as "it will stop working if you stop doing it" .

I have received a letter with an appointment in a couple of weeks at which 8 professionals will be present: Paed, 2 x SALTs, head teacher, class teacher, TA, Preschool Home Visitor (well qualified, ex teacher with MSc in Special Needs and Early Years) and Parent Support person.

Not one of these people has particularly heard of, or experienced ABA.

Several of them have told me to avoid silly and expensive miracle cures like Son Rise etc, offered to desperate parents on the internet. Apparently ABA is one of these...

I find this really quite insulting TBH. As far as I can see, ABA stands up well to research etc, and it does not purport to be a cure, simply a strategy for behavioural modification.

Ideally I would like to quote research papers on the efficacy of ABA - but am not sure where to get these (have tried Lancet and PubMed with limited success)

As all these people will have a bearing on DS's education in differing ways, I would like to use this meeting as a springboard to getting him ABA paid for by the LEA (in Scotland here, where there are no ABA schools )

DS is a friendly, affectionate little boy, who would respond very well, very quickly, to even a small amount of ABA, or ABA for a short time.

Can anyone offer advice on what to say at this meeting?

Amazing combination of prejudice and ignorance! For aba research - Eldevik et al (2009) and the Southampton university Scamp research. Also go on the researcautism.net site. It's totally independent and gives early aba intervention (eibi) its highest ranking of 3 . Teacch - widely used across the uk - gets only 1. Pecs, widely-endorsed by all, is very much based on aba principles and was devised by 2 prominent aba-ers. Salts usually hate it when you point thaat out! For some explanations in plain english of what aba and vb are, try the beyondautism website.

www.aap.org/pressroom/AutismMgmt.pdf

Those professionals lie. How can they call themselves professionals in ASD if they have not heard of ABA. Disagreeing with it is one thing, but not having heard of it is bollocks!

www.earlystart-autism.com/

It's the therapy of choice and recommendation in the US.

Incidently, my ASD expert Paed pretended she had never heard of OT for children with autism. I followed this up with a letter to her asking for a referral anyway and in her written response admitted that OT simply don't take referrals for children with ASD.

So, it was true that we couldn't have OT, but not true that she had not heard of it as she was pretending.

I suspect it is similar with ABA. EVERYONE in the LA that I spoke to pretended not to have heard of it, and yet through FOI requests I found out that they were in fact funding a number of programmes that were won through tribunal.

Thanks for all the replies!

Here is The Question that I've been asking myself for ages:

WHY don't Paeds / SALTS etc etc like ABA? What is the perceived problem?

OK, so it's not on the NHS, so I appreciate they can't refer ASD kids etc, but the ignorance, and the reluctance to take it aboard? I don't get it. WTF.

Preschool Home Visitor, after me explaining that actually I know ABA isn't a silly, rubbishy miracle cure [anger] said "Oh LOVAAS?? Oh no, I saw a DVD about that, it involves pinning children down by their arms, it's isn't any good". WTF.

We have delayed moving house, as we didn't want to disrupt the (to be fair) quite intensive and involved assessment process, which has been ongoing all year, SALTS assessing DS1 in clinic, in playgroup, home visitor also going to playgroup.

I now realise that DP is commuting daily for nothing, that the expense and stress we go through is all for fuck all really - as I suspect we will get patted on the head and sent away with instructions to keep using the "first and then" pictures (which aren't of any use really tbh) and that's that.

My aim is to angle for ABA paid for by the LEA. We are in the red every month, and can't afford to pay for it - having been quoted £55 per hour (I kid you not!) for assessments etc, then £300 per day for ongoing ABA - it's a huge amount, and far more than DP earns. Oh, and also expenses of £35 a day too, on top of that. . We live on £50 a week food bill (and eat very well!!!) so WTF...

I resent being thought of as an ill informed silly housewife who saw a miracle cure on the internet on a silly website full of nonsense, diets and manicures, who now thinks she can wave a wand and it'll all be OK.

'Treatement' for Autism in this country is the remit of the education system. Many paeds and SALTs do know what it is and why parents want it. They do, after all, adhere to NICE guidelines and strict rules about evidence-based pracitice.

However, if someone in the medical field were to recommend or suggest ABA they would get short thrift from the educationalists about it not being within their remit to advise on such a thing. In fact those in the NHS already get short thrift from those in education, including SALTs, for 'stepping out of line'. Given that education has to purchase their services often and they have to work together, for an easier life (and because rocking the boat won't actually benefit the child anyway) they generally just tow the education line.

In the US autism treatment is the remit of heath and medical services. The model there is very different.

Spoke to friend yesterday, who worked on the US about 20 years ago with people with severe ASD amongst other things.

I explained this to her, and together we looked at ABA etc - wee vids on YouTube etc.

She said this is the technique, although modified and developed now, that she and her colleagues were trained to use at work all those years ago.

She just hadn't heard it called ABA before.

20 years ago it was pretty standard stuff? WTF again...

Starlight - "strict rules about evidence-based practice" - ABA is evidence-based though isn't it?

Poopy Being 'right' is not enough if you go down this road. ABA is for any child, but the ABA fight is not for any parent. That isn't to say that you are not good enough. I am sure you are. But many extremely well resourced parents WITH the finances that you say you have not, are lawyers/teachers, have lawyers/teachers as friends, are losing.

I'm not warning you away from the inevitable battle but trying to make sure you know what it is you will be put through if you do so. Many of us (not just ABA parents, but those who argue with paucity or provision) have had child protection brought in at some stage in the process for 'disagreeing with professionals' or some such other nonsense.

Incidently, where in the country are you? This may affect your likelihood of winning this!

They don't like it because of the cost. Because its intensive and usually done for 25+ hours (often 30-40 hours) a week in the early stages.

Most autism professionals have not used it because local authorities and NHS only train their staff in cheap interventions so I have been on the same PECS course as the entire SALT dept. Everyone else will just get TEACCH training from an autism teacher who has been on a 5 day course themselves with no follow up. But I agree why they don't read the internet like parents do is beyond me.

Psychologists should have at least heard of it.

this USA national review of treatments is useful. ABA is an established treatment (see p56) Structured teaching (TEACCH) is only 'emerging' and that is proper TEACCH not the watered down stuff most of us get offered.

yes Poopy, but ABA in the UK is educational provision, not medical. And in educational provision, evidence-based needs not to apply.

I have been reading "Educate Towards Recovery" and think it is fab.

The sad fact is that I am just bloody drowning in everything at the moment, DP away 14 hours a day (redundant last year, commuting to a job with more responsibility and not quite the same pay... Train fares and bus fares are crippling us, and we are both exhausted. I was drowning before all this frankly...

I am finding it hard to keep on top of the mess, both household and mental, never mind ABA stuff. Kids are hard enough (have 2 DSs and an unplanned DC3 on the way)

Poopy I feel for you and I understand completely. I have been where you are. The choices I have made subsequently are ones that I just would not have considered when I WAS where you are, when I had hope that the truth, common sense and plain justice would prevail. It doesn't. Many of us have made extremely huge sacrafices that are unfair and can destroy you with anger if you let it.

Having said that, I wouldn't have done things differently. I simply couldn't have without feeling that I had failed ds.

Thank you for all your excellent replies.

My aim is to be armed with good quality, peer reviewed research, at this meeting - although it is mainly a medical meeting his head teacher (whom I've never met), class teacher (rather a weak link I suspect) and TA (who is lovely) will be there.

I want to angle for ABA from this meeting forth, and I need to be credible when doing so. Hopefully something will come of this, and I can arm myself for battle with LEA, and also the next LEA when we move.

Why are there ABA schools in England? (None here in Scotland though).

I will of course study each link you've sent, and arm myself with a set of keywords.

I just don't get why no one has even heard of ABA.

If they have heard of it, why pretend they have not?

You can do MSc in it at several universities - so of course it's not silly rubbish for bored housewives.

WTF...

Are you moving into England?

No, moving in Scotland.

Am looking up stuff related to the doc whose clinic it is (although this person not present at ADOS, they may (or may not) have observed the video).

This person is not a fan of Lovaas, which apparently is the most used version of ABA - I thought ABA was based on Lovaas, and Lovaas is nowadays considered rather crude and primitive?

How do you know what research is "good" and which is "bad"?

Perhaps I ought to be a good little SAHM, and just use first and then pictures .

So, it says here on a thing written by, or contributed to by, person-in-chief at ADOS

"there was also a concern that many had enrolled high functioning children with autism, making it difficult to generalise from the conclusions. The review concluded that a causal relationship cannot be established between a particular programme of intensive behavioural intervention and the achievement of ?normal functioning?."

So, if you apply ABA principles to a HF ASD child, it's kinda too easy to say you've had a good result, simply because they're not that bad in the first place?

I really want to appear credible at this meeting.

Or maybe I should just accept that they're all shite, and just ABA myself? I do not have the energy to waste on arguing with people who don't want to know TBH.

I have seen nothing bad about ABA on MN. Says something doesn't it?

That's stupid. I think you can safely say that more able children are going to do better than less able children with anything. The key point is would they do better on an ABA programme than another programme and the answer to that is yes.

Also, the problem with many studies is that the 'control' group has always been matched in terms of hours on the programme. i.e. 20 hours per week of ABA vs 20 hours per week of LA eclectic intensive alternative.

Well, 20 hours of iLA eclectic intesive alternative might well get close results to ABA, but with the exeption of studies to try and discredit ABA programmes, what LA is REALLY offering that?

Starlight Yes, it does sound as though the good results achieved by HF kids seem to discredit the results of all ABA...?

And isn't peer reviewed research renowned for being a nightmare for people who really want to break new ground, as they're constantly held back by evil / jealous peers who discredit work, or take the credit themselves (supervisors)?

DS is a friendly little boy, chatty at home, quiet but friendly at nursery. He has friends who have said they love him . He is probably the most loving and affectionate little boy on earth towards us! He is very engaging and pleasant (in words of SALT) Playgroup worker said he is lovely and affectionate. Boss lady at playgroup said he is one of the best behaved children there. I am very very lucky.

He has a bit of a lack of imaginative play, and does do things on his own terms. He falls over constantly (hence referral to paed in first place, had no idea owt else was amiss ) although his speech was a bit slow (but in normal range according to SALT at age 2). He does stink, gut issues I think (GFCF needed)

Given that he is obviously engaged with people and HF, it's well worth a try isn't it? I know he'd respond in seconds, what frustrates me really that I am too gubbed to do it myself - lets be honest, if you want something done you do it yourself don't you

PS - Anyone reading this could be forgiven for thinking I am worrying about nothing re my DS - however I do not want him to end up like my brother, who I suspect has HFASD.

He has few social skills, from the age of 7 really had no friends, and as an adult has lived alone for 20 years, works alone, is constantly on ADs and can be quite unpleasant, bitter and pretty nasty at times. Nothing was recognised or acknowledged by my parents (we both were ignored emotionally really)

I just see the future and want the best for wee DS1.

Poopy, if you message me I should be able to help.
Iam an s/lt who also has an MSc in ABA and it is the intervention with the strongest evidence base bar none for children with ASD.
I can passo n several useful papers.

It is also endorsed by both the NHS (see NHS evdence website) and the Royal College of Speech and Language Therapists in their planning and commissioning documents.

Don't expect getting it to be easy though.

I am reading through all your replies, and links, now. Have been up and down all afternoon (plumber in, also dealing with laundry mountain etc).

Thank you for all your replies, I shall plough through stuff now.