Please join new ABA Society

[sickofsocalledexperts]

After the fabulous ABA conference yesterday, and the odd but lovely experience of meeting mumsnetters in RL (and seeing people's bemused faces when I told them "this is StarlightMcKenzie, this is Moondog, drowninginlaundry, dev9aug", can I encourage all ABAers to join the new ABA society, the UK Society for Behaviour Analysis?

uk-sba.org/

It's only a £10 annual fee for parents, and we need as many people to join as possible, so that the Society becomes a powerful advocate voice on behalf of ABA. It also aims to monitor and increase professionalism in the field.

I see it a bit like air cover for us ABA mums (and Dads) fighting in the trenches to win ABA!

[MareeyaDolores]

Modifying challenging behaviour, reducing anxiety, improving activities-of-daily-living, changing sleep patterns, adjusting diet would all count as medical though, and behaviouralist-type NHS interventions are already used for these..

Oh no, I forgot, they're only medical matters if you aren't an autistic child, otherwise they're usually just the ASD

[StarlightMcKenzie]

Yes. Autism Speaks scares me.

[Inappropriatelyemployed]

The US situation is largely the result of lobbying by the influential 'cure autism' group Autism Speaks. God forbid we replicate that scary nonsense over here.

[StarlightMcKenzie]

I think there is a very basic challenge in the title tbh.

Why are we 'managing' our children with autism and not educating/treating/raising our aspirations for them?

I don't want my child with ASD 'managed' any more than I want my NT child 'managed'. Why is that acceptable, except from a 'managing budgets/resources/parental demands' point of view?

[sickofsocalledexperts]

Nice is health yes, but their guidances are v influential and tend to stretch over other areas too

Interestingly,in the US many moms claim ABA as a health intervention, on their insurance

I have often wondered if someone over here could argue similar on BUPA as a test case

[StarlightMcKenzie]

Just looking through that document, it is for the care and treatment for children with autism. I suppose it is possible that it doesn't actually cover 'education' at all?

It seems to be a guidance document for healthcare professionas rather than educators/teachers etc.

I know that there shouldn;'t be a distinction, but politically and funding-wise there is. Not that ABA shouldn't be in health, of course, but it just might might not be so disasterous

[StarlightMcKenzie]

LOL - and good luck with understanding that..... ha ha ha.

[StarlightMcKenzie]

I think the crucial thing to aim for is that document does not become one that is used to refuse ABA or ABA-informed interventions or a document that enables LA's to refuse ABA or any interventions alternative to that which they prefer to provide.

Like many parents, I didn't want ABA particularly for my ds. What I wanted was something instead of nothing. ABA was the only thing for which there was evidence and so that is what I went for. We lost and had a year of nothing (dressed up as something) and my ds made no progress. Now we have 'something' which isn't ABA but because it isn't nothing is making a difference.

[sickofsocalledexperts]

Hi pip, can I put your email on my petition

Star - just pm-ing you

[StarlightMcKenzie]

People don't understand ABA outside of EIBI, and many EIBI programmes are rubbish.

Having said that, sadly, the EIBI programme we ran for ds was both rubbish and significantly better than the alternative.

[working9while5]

I agree. Lord, I agree. I am so tired of the endless debate about responsibility and tit-for-tat "you're stepping on OUR toes" mentality from both sides.

That link is great Moondog.

I suppose I am somewhere inbetween. I want to see medium-high intensity school-based programmes in language units/provisions where there IS time for more intense work using science to guide their decision making and daily practice rather than... gossip or New Age foo foo. I had such an awful time last year trying to convince people that it was more important for secondary school students with very severe functional impairments to have the basic skills to live their lives than to know the periodic table. As we had a previous cohort who were attaining functionally, everyone (SLT/school staff etc) just didn't seem to get that when we were now serving a cohort who couldn't read, tell the time, initiate a basic conversation or say a simple sentence, we couldn't be expected to operate the same model as we had with previous year groups. Honestly! Should anyone HAVE to explain to either speech and language therapists or teachers that a one sized fits all/strategy based approach isn't always going to be the answer?

As ever, I would also like to pretty much divert all SLT resources into supporting those with the greatest need and leave basic parenting advice/teaching advice for children who are well within the range of normal Out.Of.It. If it's generic, someone else needs to be offering it as SLT should be a specialist service for those who are in need.

[moondog]

I also increasingly feel paediatric s/lt shouldn't come under the remit of the NHS unless it is full on medical stuff like cleft palates and swallowing problems.
Case law has already establishe s/lt as a educational need. That anynoe ever thoguh otherwise is just too idiotic for words.
The PCTs and LEAs often point petty points off each other and enjoy absolving responsibility in a sadistic way. Far better to have one body accountable.

[moondog]

The point about RCTs versus individual studies has been made many time and very eloquently by Professor Richard Hastings in his blog.
Check out December 7th entry

There is a wordl of difference between a full on privately funded EIBI programme and behaviourally informed interventions that run through the seam of a school day and ensure task breakdown, judicious use of reinforcement and data collection. The latter is what every public and professional body is calling for (RCSLT included) and as such, using behavioural interventions is common sense.

It is really only the latter that interests me. I want to work on home programmes (althoguh of course some wenat nad need these). I simply want accountable practice in schools and for people who are paid to make a difference to make it.

[working9while5]

Also of interest is the section on PACT, where there is discussion about how NICE's "cost threshold" for recommendation. It is, after all, really about resources. I don't say this cynically btw as resources are always going to be finite but the evidence for EIBI as ABA is understood would really have to be about guaranteed recovery to justify its widespread roll out I feel. The difficulty with that is that evidence about what works is obscured by cost time and time again when there is surely some middle ground possible?

The very reason that ABA works and is and should be considered is that it is about science at the level of the individual rather than across populations: improvement is seen within that person that has been demonstrated/proven. This isn't necessarily NICE's interest though. NICE's interest is very much about what is proven to make large scale changes across populations: something that will almost never be proven with something as heterogenous as ASD.

There is a lot in the report about how difficult services are to access, how much parents/families want and need them etc.. but I am up and down through the document all morning and I just don't see the meat and bones of what will be recommended that is additional to or different from what is on offer now.

[working9while5]

I have signed sickof thereby outing self

I don't think it's primarily about protectionism for speech and language so much as protectionism for the medical model.

Moondog, very little evidence has made it through for ABA. Essentially from my brief skim of the document, it's an unworkable model of evidence comparison for the behavioural sciences, as to achieve anything approaching recommendation, treatment has to be blind and with a sample size of 400+

I would say to those hoping to challenge it that this is the issue to work on. It is quite dangerous I think to expect behavioural sciences to rely on RCTs as the gold standard of evidence. In assuming that this level of evidence is the only one worth considering, there naturally arises a situation in which medicines will always appear more worthy than any sort of psychosocial intervention. I have had bitter experience of this "evidence" myself, and we certainly do NOT want a situation in which the only solution to human distress is mass drugging (with all the side effects that go with it). There is outright dismissal of evidence from single case study design as far as I can see .The most common reason for dismissing ABA research however is that it is predominantly based in the US so therefore totally inapplicable.

The bit that most made me go , however, was that the evidence is subject to almost crucifying scrutiny, yet when nothing really meets their standards, the conclusion is (paraphrasing here): "by consensus opinion, speech and language therapists should be consulted where there are speech and language issues". Well, that's a help then.

Many of the people who are deciding on these guidelines were involved in the production of this document on what works in Early Intervention. There is to my mind and reading a belief amongst these professionals that ABA research is "biased" and that there is "little evidence", and more damningly, that evidence is being "over-egged" to an extent.

Although some things have changed (there is clear acknowledgement of the fact that ABA is a scientific approach to behaviour vs "Lovaas therapy"), there is still talk of "modern approaches" when contemporary behavioural approaches have been around for quite some time now. There is always talk about things that mesh well with developmental models like Pivotal Response Training/PECS etc as though they were somehow out of the norm in terms of current ABA practice with "Lovaas" as the prime type of EIBI (which is of course nonsense in this day and age).

I don't particularly mind them challenging some of the evidence: what I do mind is that there seems to be a situation in which the facts of day to day provision are ignored: a) practically no one is receiving ANY therapy at the intensity of ANY of these studies; b) the "therapies" viewed as being "standard" have LESS evidence of even the "biased" and "inconclusive" sort that ABA "boasts" and c) the remit shouldn't just be about challenging methodological designs.

I feel that every time "evidence" is looked at, it is merely to look at what "flaws" there are in the study unless it fits with the authors' viewpoint, in which case it is about acknowledging flaws in a sort of half-hearted way before spending a lot of time talking about theory and then what the studies that mesh with their bias "add". Sigh.

If it were the case that there were a strong and robust evidence base for standard provision and that people were receiving provision that matched the best evidence currently available, I could take these criticisms seriously. However, in the absence of that, I have to wonder what the agenda is. I also have to query to what extent "consensus" is considered appropriate in the NICE guidance when it omits all behavioural stakeholders.

[moondog]

I've only had a skim but it is saying some good and fair stuff.

[StarlightMcKenzie]

It needs to be done. Whatever happens there needs to be a record that a group of parents were not happy, - not satisfied that what is published is not evidenced.

[sickofsocalledexperts]

Agree Star, any petition will be a bit of a David and Goliath scenario, but you never know and - in one of my fave quotes from that deep and meaningful show Sex and the City : "it's a contribution"

[StarlightMcKenzie]

I guess this is SALT's answer to the cochrane review, - a way for them to keep their jobs by getting NICE to say they should.

I can't see NICE endorsing ABA. How could they risk being expected to fund it?

[sickofsocalledexperts]

www.nice.org.uk/guidance/index.jsp?action=folder&o=63399


Here it is - a very long doc, but it is the concluding recommendations on particularly speech and challenging behaviours that I found most waffly and just preserving the status quo.

Would be very interested in your views and also those references you have collected - do you still have my email?

Disappointing of NICE, as they are supposed to be all about the evidence.

[moondog]

Oh dear.Can you link?
I can never work out how to get onto that.
NHS Evidence has tonnes of good stuff to say about ABA.
I collected all the refs. a couple of years ago. I'd be glad to share with anyone.

[sickofsocalledexperts]

Thank you Moondog! Hi!

Also, can you sign the ABA-uk yahoo group petition currently underway? The new NICE consultation on autism has shockingly almost totally ignored ABA in favour of SALT. If you fancy a bank holiday laugh, just look at the membership of NICE's panel - no wonder SALT came out tops, turkeys don't vote for Christmas!

[moondog]

It wouldn't take mine at first, but I contacted the moderator (Sean Rhodes). He advised me to try it again and lo! It works!