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?

Apologies if I haven't been responding at time to posts - I can't really get enough peace to read through replies properly. Sodding kids...

Just wanted to say hi and good luck with the fight. I know exactly how you feel about the horrible chaos of trying to find out about ABA and autism whilst looking after your dcs and keeping everything else going. Its a steep learning curve but that part doesn't last forever.

I have had similar experiences with LEA people not knowing about ABA and then appearing to have zero curiosity about it considering the huge progress that ds1 has made with it.

In terms of other sources that back up ABA as a legitimate strategy for our dcs, there is also a National Autistic Society book called 'approaches to autism' which has a page on most of the well known therapies used for people with autism and their page on ABA is very clear, using basic language and referring to evidence etc. I copied it and gave it to ds1's school when he started.

Re the funding I wanted to point out a couple of places that might help (disclaimer though - I haven't used either of them myself but have heard of people who did):

One is Caudwell Children www.caudwellchildren.com/how-we-help/ - I think they do grants for ABA and/or nutrition stuff if you meet certain criteria.

The other is the Fred Foundation www.thefredfoundation.org/about/ I have heard they can provide grants for ABA funding whilst you are waiting for tribunal, again subject to criteria. I must stress I have no connection with either of these charities but it might be worth contacting them?

Also, you can apply for DLA and carers allowance before you get a diagnosis (plenty of other threads on this which I'm sure you've seen but just flagging it in case!)

hth

I am currently filling in the DLA form - it really would help us.

My DP earns an OK salary, but there are 4 of us on it. I had a job for a week a year ago, after DP was made redundant, but had to leave (once DP started a new job) as I couldn't cover childcare costs which was bloody annoying.

Suspect DP will be very uncomfortable re DLA claim, he has never been on benefits (unlike me oops ) but he has paid enough NI contributions in his life - which are insurance aren't they, for family as well as himself. So sod that!

Thanks again for all your help. It is much appreciated.

Poopy, I read somewhere (must have been on here, come to think of it) that there are NO funded ABA children in all of Scotland. I have no idea of why that may be, apart from cost and ignorance I guess. I am exploring ABA at the moment and spoke to a consultant yesterday who basically confirmed that all of her clients are self-funded. I'm sure that's not helpful to hear, but forewarned is forarmed. Sorry.

Look up the SIGN guidance on asd from 2007. It summarises the evidence and suggests what Scottish health services should aim to provide.

ABA is linked to lovaas and they conclude that it doesn't cure asd (Yep, Pope still not Protestant....) and that the evidence of benefit isn't watertight. From your point of view the next bit is crucial: 'focal behavioural interventions' are considered effective for a range of problems. So, in Scotland it seems to be policy to do aba type stategies when they are packaged to address areas that each require focal behavioural intervention...

Maria, that's a pretty sorry excuse for a document.
A great shame that it spekas of the need for accurate information yet makes no mention of the huge body of evidence supporting use of ABA, which is far more effective than anything else a parent of a child with ASD will be offered.

Poopy

I saw a job for an ABA support worker advertised last month by a council not too far from me. Have you thought about fundraising? Another charity to try in Scotland is www.theteddybearfoundation.org/ and this one might be worth a look too if you think about fundraising yourself www.specialscotland.org/index.html

I hired a number of cheap young babysitters and made sure some of the time that they were with us was WITH the children, playing etc. (as well as during the 'interview'.)

I have found two excellent tutors that way. After a couple of times, and when they have shown genuine interest in reading ds' ABA file and I can see how capable they are at keeping ds' attention I have offered to show them how to do some of the easier trials and how to slip them into what they were doing already. I'm in the SE and yet have managed to do this at £5 and £6 per hour.

One of them is training to be a primary teacher so I feel I am doing a great service to her future pupils too .

Im not trying to say the sign guidance is great. To me the main problem is that it assumes that interventions can be evaluated simply by combining the results from large randomised controlled trials. And if that data isn't available, or doesn't show a big difference then the intervention is considered unproven. And this type of analysis isn't ideal for demonstrating the usefulness of a complex, evolving and variable treatment like ABA.

But SIGN is Scottish, well respected and evidence based, so the OP needs to know what it says. Despite saying that ABA is unproven, it also concludes that behaviouralist approaches work well for many issues, and that parent mediated early intervention is useful. ABA-lite as a parent-mediated, specifically focussed, behaviouralist intervention might be easier for Scottish professionals to agree to.

Moondog, do you know anyone north of the border?

Hi poopyfingers As I understand it there is one family in Scotland that has a fully funded ABA programme. The child has a Co-ordinated Support Package, which includes ABA. The parents started by self funding the ABA to prove the benefits. However, CSPs are only available to the most disabled children, with multiple needs.

I read here on mumsnet the tribulations that English families go through to try and get ABA in a statement, but I'm afraid that's just not an option in Scotland.

Is your DC in a nursery? Is he getting additional funded hours? If the nursery are any good you might possibly be able to get them to agree to be trained in ABA by a consultant and deliver the extra hours as an ABA programme. You would still need to pay the consultant yourself.

It's all quite confusing because it's the NHS that assesses children, but education that delivers support.

There is a charity called TailorEd Foundation that will deliver ABA programmes at home on specific issues, eg toilet training, but I'm not sure that they help with finer social and language skills.

Are the English ABA schools all for 'severe' children? It sounds like your DC would be mainstream with support.

I had to guffaw when our neurologist told us 'these private therapists get so stuck on one therapy, but the wonderful thing about the NHS therapists is that they use a range of therapies'. I told her that our private therapist knocked the socks off anything anyone in the public sector had offered my DC. So she said 'oh yes, you get this wonderful choice, you can use the public sector offering or you can pay to go private'. Some bloody choice!

Sorry this is turning into a bit of a rant...

Will be interested to hear how you get on at your meeting. Good luck with it.

Hi
I am north of the border and run Scotland's first independent early intervention service and Centre- which is a registered charity
I am also a researcher and have spent a but if time in the straws- and although Scottish am truly disgusted as Scotland's attitude to early intervention- and ABA in particular
We are going to be launching a lobbying campaign next year so anyone interested in helping us out at all (case studies/ interviews etc) Please do get in touch
[email protected]
Also for anyone having issues in Scotland mindroom are an excellent source of support and information- www.mindroom.org

Oh my goodness- predictive text on iPhone SOrry!!!!
Meant to say I spent some time in the states and am disgusted at Scotland's attitude toward early intervention and ABA or evidence based practice generally!!!!
Oh well if nothing else hope my iPhone fails make people laugh!!!

Good to see you posting again RGO.
I went to a presentation on ESDM a few months ago by Sally Rogers and we talked about you.

Keep up the good fight.

Ooh I love Sally!!!
One day soon when we get some decent funding we are going to be running a conference on evidence based early intervention and hopefully we will be abl to afford Sally to come speak- plus other experts like Dr Karen Levine ... Hopefully put Scotland on the map a little! Goodness knows things need to change :0)
Must come visit Wales sometime!

i second RGO. she's pretty darn good.

Hi eandz, long time no see!

What is this a reuniting thread?

Ha ha! Hello !
Eandz- moondog didn't say whether dr Rogers thought I was actually any good- her (sally's) lasting impression of me on the ESDM training was to tell me to cover up as I was dressed as a Brit on holiday in California!!!!
Starlight- I will pretend I don't know who you are really!!!
OP- sorry for hijacking your thread- getting back to the original point -Scotland is pretty rubbish but we are trying to change things for families and slowly but surely we are getting there

i started a reunited thread. :)

I think I always want to dress like i'm on holiday in California.

OP--I would just make everyone watch ABA documentaries in my home if they claimed they didn't know what it was.

Moondog, tell me more about esdm. What i googled looks really interesting, but is a bit sparse.

The control group was a standard community based intervention.... presume even this was pretty substantial by UK standards? Any gossip yet about how well the early gains seem to be holding up?

Hello all!!

Apologies for late response by me - have had the week from hell due to having CVS for DS3 / cat being seriously ill / car packing up yet again / repairs in house / other shite that I can't even remember as it's all a blur...

Thanks for all of your replies and messages - very appreciated!

It would seem that the reason for not liking ABA is the perceived poor quality of some of the research. The fact (if it is a fact) that ABA isn't supported by adequate research findings is really a problem with the research, and not ABA. I hope this changes soon.

So, how come US medical insurance are happy to pay for it? If it wasn't any good, they'd hardly be queueing up to cough up for it would they? Insurance companies are hardly generous or altruistic... Isn't the fact that ABA is supplied proof that it is an effective intervention?

Also, I do not understand why ABA (or any other intervention for anything else for that matter) is condemned by people who admit they know little or nothing about it. What is that about? Bloody annoys me

Ooops yes, I do overthink

I think ABA really would work on my wee DS though, he is responsive etc.

But of course there is no "one size fits all" thing - and of course you are entitled not be an ABA fan.

Why would an employee of an LEA or NSH give a shit about cost though? Is that jobsworthism or what?

It wouldn't bother me, but I am a baddie