Parents of children with ASD, Is ABA the answer?

[Slinkysista]

Hi everyone

Doing some research work for university on the pros and cons of ABA in the treatment of ASD.

Was wondering what the general mood was towards ABA amongst parents of children with ASD on this site. Amongst the parents I know personally and from what I have read there seems to be two very distinct camps those who can't praise it highly enough and those who think it is overrated and have ethical concerns about implementing an ABA program ( as in ABA is trying to change their child and is totally unaccepting of what some parents feel are their child's little personality quirks as the Son Rise program, for example, would).

Where do you stand?

Offered something?? I got a letter with the dx for each boy, then a heap of leaflets about local and uk charities. That was it.

I get my info from mumsnet and any books I decide to read on the topic.

But I thought it was generally accepted that early intervention is crucial??
Is this just in theory but not in practice?

What do parents do? self fund programs? I have heard of some people doing this but I thought this was the exception rather than the rule!

Have you seen from other threads how many years it takes to even get a diagnosis for some families?

Compare this model to one where we get a move on with the dx. Child recives 20-40 hours of 1:1 ABA per week for a minimum of 2 years.

Well, you can see why LA's shy away from it.

But, - ABA isn't complicated. It isn't hard and it isn't doesn't really use any more resources than a child with a disability already uses. It simply requires a joined up, well trained system.

Through a subject data access request I got the details of how much money individual departments got for having my ASD ds on their case-load per year. A couple of grand here, a couple of grand there, £5k to the autism advisory service and £3k to the Educational Psychologist (who he has NEVER seen), plus £12k for the TA.

It totalled to £22k per year, that the LA had to spend on my ds for things that I never saw, and was making NO difference to my ds' progress. They took the money then labelled my ds incapable of learning so no point in bothering. ASD after all, isn't curable.

That's absolutely horrendous!
What did you do starlight?

Slinky - The reason is ABA is expensive. Very expensive. (Compared to doing nothing.)

Early intervention means 'refering' your child here and there, and having a couple of 'meetings' and giving you a 'support pack' and having your ds be put 'on file' somewhere else, and on yet somone elses 'caseload' and then someone might come and do an 'observation' and someone later might 'write a report' and then when you complain you'll be told that no-one knows what you are talking about because you have loads of professionals 'involved' in your ds' case.

ABA is direct therapy. You see the progress. You can measure it. You can participate in it.

I took them to tribunal for ABA and lost because the system is so geared up against ABA and the tribunal panels are made up of ex-LA staff.

Not everyone loses though and I'd do it again so don't anyone be put off.

I could only afford to fund 8 months. My ds progressed at 4 times the rate of his peers and how has a chance in nursery. When I can get some more money together I'll give it another blast.

It might mean another tribunal but that pretty much depends on the outcome of ds' proposed statement. We had an annual review 3 weeks ago and I expect they are all running the statement by everyone in the world.

They are also deliberately making us miss the reception school allocation deadline so that they can use the school we want him to go to in the negotiation no doubt.

Surely to implement an ABA program would be cheaper than all this to-ing and fro-ing?
Are there any ABA schools where you are?
If so are they private?

It's so bloody unfair, it makes me mad that a child can be written off and 'unable to learn'. I think I am learning what is supposed to happen but obviously what is supposed to happen and what actually happens on the ground are two very different things.

son rise all the way for us. We've had fantastic results, and yes, it's American and does mention 'love' and 'being happy', but none of those are things I have a problem with.
You need to find something that suits your general outlook and family style, though, because whatever you choose you're going to be investing time and money into and you need to be able to get behind it.
It's been amazing for us, though. From a completely non-verbal, isolated boy at 4, ds2 is chatty, bright, great sense of humour, one of the most intuitive and emotionally aware people I know at 12. He still has asd, but would probably get a diagnosis of as now, tbh.
And I like the whole 'happy, enjoy and respect your child, give them credit for trying to take care of themselves in the best way they know', approach of son rise; but as I say, you have to find something that rings bells for you, because you're going to be doing a lot of it.

You can only get an ABA school if you go to tribunal (And this is getting less and less likely in the current climate). A tribunal that will set you back something in the region of £18k if you pay for legal help. (very few parents will be able to do it themselves even if work in the legal sector, although there are some parent advocates that are just very experienced and will charge less)

Your child has to be considered pretty much unteachable by everyone first but my ds is high functioning and quite timid and unopposing. No teacher is going to be scared of having him in their class.

So it seems they are actively working against you as opposed to working with you to get your son educated! unbelievable.

Seriously does it just come down to money or do the LEA have some ethical concerns re ABA?

I think there is only one state run ABA school in the country and it focusses on preschool and nursery ages. Nothing for older I don't think.

The trouble that that LA faces is the potential for parents to flood there and demand the provision as their own LA doesn't have it.

Yes, there is some research that shows a couple of years of ABA during the early years saves the tax payer around £70k by the time the child is 18 and a lot more in un-needed social care during their adult years (hundreds of thousands). The trouble is, the early years budget is small and they want to push any costs for provision into the education budget, who try to hold out for as long as possible so that the expense becomes the remit of the social care budget.

Sounds excellent Post, there are two girls in my class who work for thr Son-Rise program and they are very enthusiastic about it and it sounds lovely although the research doesn't seem to be out there to back it up in the way ABA is backed up. Any ideas as to why this is the case? I've seen on youtube some amazing results from Son Rise, ABA, TEACCH etc. Wonderful to watch, very moving.

Starlight you really know your stuff in relation to all of this, sounds like a minefield to me. Did you research this yourself or do you work in the ED sector? Is the support out there for parents who wouldn't be as clued in and say some of the mums on Mumsnet?

Some LEAs have ethical concerns but these are based on dogmatic ignorance and fear.

When ds was doing his programme I would invite LA professionals and school staff almost weekly to observe ds on his programme, to read the literature, to look at the data, to look at the curriculum and to evaluate the programme for their own satisfaction. Even when they were in my own house once they refused to even open the folder. All other invitations were not even refused, but simply ignored.

There isn't really any support. There is the ABA yahoo group which can be helpful but because LA's are so opposed to ABA parents have to become strategists and so can rarely freely post their experiences or information.

My degree was in psychology. I hired a qualified teacher who was doing a phd in autism in education to independently assess ds and put together our ABA programme (Specifically VB). My Mum and Dad are also both qualified teachers. I observed the programmes of other children. I went on a PECS course (ABA in one of its purest forms) and interviewed a number of ABA providers.

I spent far too long making sure that it was absolutely the right thing to do for ds and he missed out on a few months of potential therapy as a consequence. I was supported in my journey by some very kind but brutal MNers who I will never have the words to thank properly.

I also spent many years working in or for Local Authorities.

The reasons LAs prefer TEACCH to ABA imho are a) cost and b) prejudice, and old uninformed views of ABA as "cruel" or "intense". By the way, it always amazes me that LAs will say that ABA is "very intensive" and will mean that as a criticism. When my son was 2/3 he couldn't :

talk
understand anything said to him
play
Use toilet
dress himself, or even know what dressing himself meant
make eye contact
play with anyone rather than just alone
stop jumping up and down on the spot screeching "eeeeee " and flapping his hands, for more than one second, or when asleep
understand any dangers at all (cars, electricity, water, heights, windows)
read
stop flooding the houseby running taps constantly
bite anyone who annoyed him or headbutt them.

With that list in mind, I think an intensive approach was a good thing, not bad.

The patronising, paternalistic attitude to SEN nowadays goes something like this

"we're not allowed to discriminate against the disabled nowadays. So surely it must be discriminatory to try and change them. If that little boy wants to spend his whole day licking the window, that's his right. Any nasty people who try and change him are anti-disabled or some kind of fascists. That's what ABA is like"

Of course they would never articulate it like that, but that's the root feeling.

ABA has been the absolute making of my son , and the sons of very many of my pals with autistic kids.

I am not without experience of other methods, having paid out £1000s on TEACCH and traditional SALt as well. To zero effect.

I suppose the interesting question is - are there any people out there who have done ABA and had zero good effects? Because the anti bigade do, as Starlight said, seem to consist largely of those who have no personal experience of ABA, but have heard it's bad. Good luck with your essay!

The horse boy man said he tried it with zero effects, but then he set up a horse riding school for kids with autism which he swore would work instead.

Sadly there are people like that too.

ABA is intervention tailored to the child. 'Eclectic' is intervention tailored to the LA. No-one within the LA can recommend ABA because they would be out of a job if they did, unless they became experts themselves, but that would be extremely discouraged by those who could not, would rather not.

The early years education of an NT child is intensive. Adults don't have to do an awful lot because the child will explore, seek out new experiences, experiment etc. They'll be on the go learning from the minute they wake until the second their heads hit the pillows fast asleep. It is what they are designed to do, learn intensively

Children with autism get 'stuck'. The find a rigid rut and they refuse to come out because they don't know how and they don't understand how. They need a companion who knows how to use their motivations and the relationship to ensure that their learning is as intensive as that of an NT peer.

Son-rise can do this to a certain extent. Possibly with a very intuitive and experienced therapist that happens to suit the particular child, you can get very far indeed. The trouble is, with Son-rise there is no systematic teaching of essential developmental milestons taught in the order that NT children will development. There is no regular rigourous evaluation to ensure key skills are mastered and that no gaps are left, nor an assessment of what enables the child to achieve skills at an optimal pace.

If the LEA were reading this, do you think they would see this thread and the discussion as being that of parents who were the exception ? or the rule?

i do wonder what it takes for them to understand what we want and why. How would they judge this thread, would they say we (who support ABA) are the very few, that most parents who have kids with autism just want teacch and basically crap for our children?

boggles the mind.

it was said earlier in the thread, they are afraid of losing their jobs. imagine if we didnt need their lousy 'interventions' and us parents became empowered and ALL parents realised their children could learn, would learn and so on - they would be devastated.

never forget, after all that your son or daughter has a LIFELONG INCURABLE CONDITION - dont ever ever forget it (thats what its all about, not allowing our kids to thrive) They are damaging our children on purpose and in my opinion its child abuse on their part.

you will (ABAists) note that an ABA private practitioner was recently sued for damaging children in the usa - why cant we sue them here (LEA) for damaging our children out of neglect?

a class action from all of us?