Mumsnet Talk

Found via a tweet from Ben Goldacre. Interesting stuff, and food for thought. It made me think about Tinsley House support thread and how parents of children with autism really have a minefield to deal with in terms of what to do, as well as worry for their children -
autism treatments

I love Ben Goldacre. I can't get that article to open though, any chance of a copy and paste or is that naughty?

Just read this through on one go. What a sensible article

So what should parents be doing? What actually works? Jensen said a physician who makes the diagnosis of autism spectrum disorder will likely write a prescription for physical therapy and speech therapy. “And if there is one thing that we know very clearly, it’s that children with autism respond to intensive behavioral intervention.”

Applied Behavior Analysis is considered the gold standard of treatment, Jensen said.

I think this is quite true and sensible.
Not taking away from the allied role of SaLT or OT, but this is the kernel I think.

Sensible article.

bump for evening crew

Just going to have a look now.

Very interesting read. Also the comments below the article are very interesting too. Who knows what to believe.

I have not had so much luck with the ABA professionals I have approached thus far I have to say. I think it really depends on the child and that there is a dearth of experienced professionals able to deal with articulate, high functioning children.

I love Ben Goldacre too.
There are two issues.

People seek easy cures to a variety of different problems.
There are no easy cures. ABA is hard work and requires discipline and structure.

People would like you to believe that addressing developmental disabilities requires a cast of thousands and pots of money.
This is a myth which creates an ever greater SN industry,

very good article, thank you

'ABA is hard work and requires discipline and structure.'

Quite right. I don't know any parent who thinks there are 'easy cures'. However, there is no point applying hard work and discipline for the sake of it. There has to be a purpose and I have seen two ABA therapists flounder to come up with workable solutions to complex social skill problems as both seem to fall back on the 'sit there', 'eat that' 'learn words' model which they are used to applying when these are not my child's problems. I don't doubt there are therapists out there who can cope with issues like this but both I've met so far said they could and clearly can't.

This is not to undermine the therapy itself and I am sure you are an expert practitioner Moondog, but not all are and it is very difficult to differentiate when you are trying to instruct someone.

Also, the reality is, for most people, therapies, including ABA do cost pots of money. Nothing comes for free and even if you do at home yourself, the child still has to function at school.

I think this is the SN industry you are talking about, getting in the way.

I've had similar experiences inappropriatelyemployed with my two high functioning kids and ABA. We tried an after school programme with mixed results - some of the game playing stuff was useful, but a lot of the things we and their tutors were doing with them they already knew so it was a waste of time and money.

In retrospect I should have been a bit more up front about what I thought but I was in awe of all these people with Psychology/ABA degrees and higher degrees and assumed there was an ultimate purpose to it (I now suspect it was just box ticking).

In the end the programmes collapsed because we just couldn't afford the hundreds of pounds it was costing us every month.

I'd also like to find research on how effective ABA is with higher functioning kids, but as yet haven't seen any.

That would be interesting. I also found that they found a highly anxious, highly verbal child difficult to plan for. I think he needs CBT more than ABA

It's true most behavioural approaches focus on ASD.
It;s rather frustrating as they have so much to offer kids with other issues. There is a lack of ABA trained professionals to deal with these children however.

It's actually the population that I have most clinical interest and professional experience of so I am very keen to develop this and we have a lot of interventions going on for these sorts of children. The CBT comment is interesting. Mindfulness is a behavioural approach that is attracting growing attention and some of my colleagues are using it with great success with children who are very anxious and get overloaded with language and adult instruction.

Classrooms are busy stressful places, none more so than those in special schools where people are in and out the whole time. We have taken intersting and rather worrying data on this which demonstrates quite graphically that all the people traipsing in and out are exacerbating the problem and not alleviating it.

We have some interventions going on where we reduce the background noise and virtually eliminate all adult instruction/conversation. It makes a remarkable difference and once staff see the data showing resultant dramatic reduction in anxious behaviours, they are more than happy to comply.

A different approach is needed to education and schooling in general I think. The whole model is stressful and doesn't work for many. The things that go on in the playground without adequate supervision are terrible. It's such a false environment too, very few people work in an environment as stressful as school is for a lot of children.

As for ABA, I often think a lot of it would be better branded 'positive behaviour support' because that's the aim really - creating an environment and facilitating behaviour that allows a child to relax and learn.

Paisan I am in the middle of crafting a parental response to a proposed statement, and I really like your turn of phrase "creating an environment and facilitating behaviour": I will use it if I may?!

Feel free, I just made it up It's at the heart of it I think.

Jensen said a physician who makes the diagnosis of autism spectrum disorder will likely write a prescription for physical therapy and speech therapy. “And if there is one thing that we know very clearly, it’s that children with autism respond to intensive behavioral intervention.”

Applied Behavior Analysis is considered the gold standard of treatment, Jensen said.

It’s this kind of over-simplification that makes me afraid of losing the “Asperger’s” label. ABA would not have been the least bit appropriate for my DS, another of those bright articulate anxious Aspies. Social skills therapy plus a side order of OT and anger management have hit the spot exactly for him.

You are I think confusing EIBI (Early Intensive Behavioural Intervention) with ABA Kleinzit.
ABA is the science of behaviour, behaviour referring to anything that is physically manifested.
As such, its application is relevant everywhere and anywhere.
Business, education, politics.
Currently huge in the field of Health & Safety (particularly in NZ) and in the Green movement.

I agree Kleinzeit but I do think someone as expert as Moondog is capable of crafting a more child specific intervention. I know she has helped me with many targets etc.

I really agree with creating a positive environment but this means different things to different children and my experience with therapists so far has been to look at things that they child does differently (usually to help deal with anxiety) and try and correct that, working on the basis that the child just wants it their own way. I and DS's school found that very uncomfortable.

Moondog, I really wished you live nearby!

Kleinzeit, ABA is appropriate for my NT DD who has challenging behaviour due to being 4 and very bright, and my NT ds (7 months) who has been taught sign for food, milk and even a nap and is the happiest baby on the planet as he doesn't have to cry for these things.

It is appropriate for a business seeking to increase the moral of their staff, and efficiency of output. It is appropriate for drug rehabilitiation, prison harmony, behaviour in youth club foyers. It is appropriate in the home to keep on top of housework, finances, relationships.

Knowing what I now do I'm pretty certain it is appropriate for children with Aspergers.

Well the article wasn't making that distinction very clearly either moondog. You're right, it could be read your way, but Jensen didn't say that ABA is the science of behaviour which can be incorporated into other therapies, and she did say that intensive behavioural intervention is what (all?) children with autism respond to. I am worried that different therapies which would have been seen as more appropriate for different sub-groups of people with ASCs will now be seen as competitor therapies across a much larger group of people who will all be lumped together, with IBI (or whatever) as the "gold standard" for everyone with an ASC.

'I'd also like to find research on how effective ABA is with higher functioning kids, but as yet haven't seen any'

Actually, most of the lovaas stuff focused on HFA children. The research actually does suggest that HFA children benefit the most. The arguments around this usually centre on the fact that HFA children benefit the most from pretty much ANY intervention and 'some' will figure it all out anyway and become independent all by themselves, which means that an LA 'might' have got away with not funding it for that child. So some people call into question the necessity of ABA for HFA children iyswim, but not because it doesn't work or because it doesn't make a difference.

Having said that, ABA provision in the UK is crap imo. Nothing to do with ABA, but the application of it by quasi-professionals who get away with offering substandard provision because of the refusal of the government to make it mainstream and competitive and to ask the right questions of providers. Parents have to go 'underground' and there are traps there.

I think Star it is appropriate in the hands of someone specialised in delivery in the particular environment or very skilled in the principles.

I know what Klein is saying. There is something peculiarly distinct about Aspie anxiety and angst and the ABA approach seemed to want to reduce this to deliberate non-compliance (in the sense of naughtiness) which leads you nowhere as you want be working with the child on the right issues.

I totally accept that this is probably the therapists rather than the therapy but finding the right therapists is very hard as they say they can do 'x,y,z' but are clearly only competent in 'a,b and c'