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Parents of children with ASD, Is ABA the answer?

225 replies

Slinkysista · 06/04/2011 16:54

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?

OP posts:
Agnesdipesto · 08/04/2011 14:22

Coming to this thread late as last week spent on interim review ensuring we held onto aba won at tribunal last year.

To answer the original post yes ABA has been life changing for us and DS. My experience has been that there are lots of cross over between ABA and other approaches and approaches are not as opposed as people might think. It does depend on the type of ABA and there is lots of variation. Many of those who started under Lovaas went on in the field and adapted it and blended it with other approaches and what we use is discrete trial teaching aba but with a lot of emphasis on social and play. DS is 4. Our ABA team definitely use techniques from Floortime and RDI for eg, not because they buy into the idea behind RDI / floortime that if you recreate the typical developmental steps you can rewire / change the brain; but because those practitioners have come up with some nice fun activities which can be used within ABA to promote social interaction. Also many speech therapists do use PECS and token systems which are very ABA based. However other approaches eg PRT, Early Denver etc all have ABA base. So the idea that ABA is this rigid approach is completely misleading. The ABA staff we work with are constantly trying new things and their ABA model is constantly evolving. For eg with teens they would use group counselling / support groups. They will borrow any other approach that works.

What I like about ABA is that it keeps its integrity. I do not doubt if I went to see Teacch in its purest form that it would have something worthwhile to it; but what happens is TEACCH allows itself to be diluted into eclectic approaches and used by people who have been on a 5 day course and used in mainstream not teacch classrooms and it becomes so diluted to be worthless. I also think it sets very low expectations for children and sort of encourages dependency on routines and structure which some (not all) autistic children can actually be taught to manage without. I feel like it expects children to remain disabled and dependent on others forever. eg we were being told to use symbols on a keyring to communicate with DS long after he had gained speech and could follow verbal instructions.

ABA is about using motivation and rewards and setting a clear expectation the child will do what is asked (and it is a single trial to start with eg a 1 second task) before getting the reward. For DS when we started we had to do this hand over hand eg give me the green brick - now you get that reward. Once DS understood this contingency it opened up a window in which he could engage and learn whereas he lacked any motivation to do so for the sake of learning. He would have done repetitive stuff all day. Now he can sit for about 15 mins and do tasks before getting a break which is about typical for a 4 year old.

As I understand it children who were deemed to be at all parts of the spectrum and with and without LD have been shown to benefit from ABA but those who have language skills, are young when they start and learn quickly in the first few months have the best chance of a good outcome. So I think many HF children actually gain massively from ABA.

I know some children deemed to have SLD have had good outcomes but the % is lower; some of these parents whose children made very slow progress can be negative about ABA, but I suspect their disappointment would be the same with any approach.

There is also some bad ABA out there and some people do have bad experiences just like some of us had some lousy teachers.

Historically the anti ABA movement refer back to the fact that ABA was initially used for eg to try and 'cure' homosexuality and I have been to a conference where Richard Mills the head of research autism made a great deal out of Lovaas's involvement in such research (I have no idea whether he led it or was just a research assistant at the time) as a reason why ABA should be shunned - even though his website shows positive evidence for ABA. The conference was at an NAS school and obviously most of the NAS top brass are very wedded to the TEACCH approach they use at their schools. They also make much of the fact that early ABA used 'aversives' eg a slap on the hand or a loud 'no!' when the child got the answer wrong. This is where the idea ABA is cruel comes from. A few weeks ago i went to a talk where an autism campaigner was talking about a book he has written on the history of autism and in a room full of autism 'experts' including Uta Frith he said it would have been better if Lovaas had not been born. The author just happens to be best mates with Schopler (TEACCH). A laugh went around the room as though badmouthing Lovaas was a common theme at such talks. I think the history of ABA is used to cast a shadow and stop impartial assessment of the merits of modern ABA.

So ABA does have a murky past BUT it was the 1960s when actually being homosexual was illegal in many places; when many schools used corporal punishment and when children with autism were thought unteachable and locked up in institutions. This is often missed. ABA has moved with the times and just as we don't cane children in mainstream school anymore, ABA does not use aversives.

However you will find alot of autism 'experts' very anti ABA will hark on about its origins as though that makes it an approach that should never be used. Just because we used to transport slaves on boats, doesn't mean we should not ever go on a boat.

The other thing which people seem to hate about ABA is the idea of cure or recovery. People are obsessed with the Lovaas study about whether 50% of children 'recovered'. the author I mentioned said he had interviewed some of the 'recovered' people and they were still autistic. But Lovaas never as I understand it said these children were cured, what he said was that they could function in a typical classroom without any additional support. I think use of terminology like cure or recovery has been unfortunate as ABA is always judged against that bar - do children recover - rather than being judged in the same way as other approaches - do these children make good progress / speak / become independent.

In the best ABA clinics in USA nearly 100% of children gain speech. Its like the difference in UK and USA cancer rates 10 years ago. We don't even collect the data on % who speak but it is much lower perhaps 50%

Because there is this idea of recovery (eg Maurice book Let me hear your voice' whose children no longer met the diagnostic criteria) then people judge ABA much more harshly and always refer to flaws in the research and literature yet then fail to apply the same degree of scrutiny to other approaches whose research and literature also have flaws.

Then of course as Star says there is the expense.
DS package of fulltime ABA costs £50k pa.
But the idea is that is a short term programme of 2-4 years and will then fade out - assuming he has a good outcome and will save money later in life if he can live and work independently.

I do know children who had ABA and do now manage without any support in school but I doubt their parents would say their children had no trace of autism what they would say is that the autism is no longer disabling.

We had to fund ABA ourselves for 18 months, plus reports and legal fees. I would think that cost about £12000. But we also had to give up work and be the ABA tutors and that has cost us about £15k-20k a year in lost income. Now even though we have won ABA I cannot go back to work as there is a recruitment freeze. So my income is staying much lower than it would have been had my son got decent provision 2 years earlier.

My view of Sunrise is that it sounds like a cult. I also don't agree with the idea that parents should do most of the therapy. Now DS has a fulltime programme with tutors who come in he makes more progress than when I was his tutor and was a tired out, stressed out Mum trying to juggle work, ABA and three kids. Yes parents need to know how to work with their kids but the idea that parents have to do all or most of the work (which most UK research eg PACT is looking at) is wrong in my opinion and is being used as a cheap way of delivering intervention. I love the fact that people come in and work with DS and I get a break. Also he benefits massively from working with lots of different people, in different environments including mainstream nursery.

The attitude to ABA has to change at a national level - by govt review of research and NICE type guidance for education interventions. No LA can really embrace ABA fully as everyone would then move there. We also have to get much better at measuring outcomes eg can the child speak, dress, how many friends do they have rather than just academic outcomes and then we can properly see which approaches add value and which don't.

I do know SENDIST turned down a Sunrise case - the LA had agreed some sunrise but not as much as parent wanted - because SENDIST were not convinced it had any evidence behind it. So evidence of effectiveness is important. The evidence behind ABA is now not controversial and people borrow from ABA all the time. The myths remain to stop parents looking into ABA and then asking for it to be paid for.

StarlightMcKenzie · 08/04/2011 14:23

Lenin, there is NOT ONE parent that doesn't wish they had MADE someone listen earlier.

Please don't let guilt ruin your ability to move forward.

willowthecat · 08/04/2011 14:42

This is a bit off topic but Schopler is deceased now and Gary Mesibov resigned from TEACCH about a year or so ago and I don't think there is a replacement yet. Hmm CVs in the post !!!

DietcokeGirl · 08/04/2011 14:54

Hmmm, I was given the impression (!) that ABA was all about 'normalising' the person and that's why I haven't research it fully, until now. We are doing PECs and other activities which I believe are taken from TEACHH approach. DS1 is 3.9 and still mainly non-verbal. He seems quite a bright boy and I believe we need to invest more time and effort for him to make more progress. I am doing things at home but is a bit tricky when DS2 (18ths) keeps taking over, he has got the PECs sussed already!!

I have been reading this thread with interest.
How does it work when the DC's are at school? Does the tutor go into school or do they have to do it when they get home?

willowthecat · 08/04/2011 14:58

Strangely PECS is actually ABA though can see why you associate with TEACCH as they are often used together without enough differentiation - which makes Pyramid a bit annoyed !

electra · 08/04/2011 15:21

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Message withdrawn at poster's request.

LeninGrad · 08/04/2011 15:23

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silverfrog · 08/04/2011 16:06

I think the biggest problem with the TEACCH approach, as I (and dd1!) have experienced it (via nhs SALT, via MS pre-school, via specialist ASD pre-school, via Portage, etc, over the course of about 4 years) is that the ideology seems to go like this:

if a child improves behaviours and shows progress, then it is of course down to the TEACCH approach.

if a child does not show progress, and god forbid actually regresses, it is the "fault" of the child, ie, maybe they would never learn anyway/is hard to quantify a learning disability in one so young, maybe tis is the extent of potential etc.

time and again we came up against this - if dd1 did not understand/did not comply with something, then no effort was made to understand why - there was just a blanket "well, we have used this approach with many children over many ears, and it works for the majority" (ie, your child is in the minority, and (implied) there is no more we can do.)

I have variously been told, over the years that dd1 will never speak, that she will not be able to understand anythign other than a one-word utterance/direction, that she will porbably not ever be independdent, that she will never access any mainstream activity.

this is a girl who just yesterday successfully negotiated her reward up from a singl chocolate button to a lovely rich truffle ("after tea have new chocolate. this one. mummy's nice chocolate. yes. for dd1. dd1 have new chocolate please, mummy? . I'd like new chocolate after tea please mummy"). a girl who is attending tumbletots like any other child - being left with the instructors there, and listening and communicating with them, including at "news time" - answering questions about her week and imparting info. a girl who is about to start at Rainbows (with support, at least initially).

a girl who has astounded her school with the progress she has made - her TEACCH school told us that we would have to accept she might never talk in school (after less than a year's attendance, without adapting their appraoch for her at all, despite her clearly being fully verbal upon arrival at school, and again at pick up Hmm) - the hwole of her life written off if we had allowed her to stay in that system - those notes would have transferred with her, low expectations would have carried on, and she would not have achieved hal of what she has done in just this past year.

Maybe itis just the practitioners we have come across, but this is cross a long perios of time, in 2 different counties, across a variety of services - TEACCH does not seem to allow any modification for the individual, nor does it make room for any cnstructive criticism, or adaptations.

sickofsocalledexperts · 08/04/2011 17:20

Totally agree, Silverfrog. In my long, fruitless and expensive experience of TEACCH, it works only for those who are already high-functioning. And then they claim the hf-ness as their own.

Those who are high functioning are probably going to thrive under most methodologies anyway; it is the teaching methods that can tackle also those children who are at the more severe end of the spectrum, like my boy, which have the real value.

And of course ABA works well for high functioning kids too. I was blown away by the research study in the US which showed that ABA, if applied early enough ie when child is under 3, led to a 49% success rate (where success was defined as a "mainstreamable" child at age 5, with normal or near-to-normal IQ/speech.)

Why aren't we offering all kids this kind of intervention right after diagnosis? Why aren't we diagnosing at 2 so they have the best chance?

Rhetorical questions, sadly.

moondog · 08/04/2011 17:31

ABA works for anyone. Anyone at all who wants to learn faster and more efficiently.

I apply the methods to all aspects of my own learning and colleagues do too-off the top of my head, we have people using it to teach themselves/others idioms, bible quotes, aviation safety checks, vocabulary in a foreign language, legal definitions, technical terms for poetry.

List goes on and on and on.

StarlightMcKenzie · 08/04/2011 17:33

Dietcoke If you attend the pyramid training (them wot invented PECS) they'll tell you in the first 5 minutes that their approach is ABA.

I have noticed too that they are now running training on how to manage challenging behaviour. I wonder if teachers and LAs can refuse their approach to that and say it is inhumane?

StarlightMcKenzie · 08/04/2011 17:34

That's interesting willow. A friend of mine has recently been on a TEACHH training course and said that they are still using their slides from the 70s.

sickofsocalledexperts · 08/04/2011 17:50

What makes me so ANGRY is that there would be a complete outcry if this was all going on in the medical arena - ie if there was an intervention available for kids with a life-threatening illness, which had a 50% chance of giving them a normal life if applied early enough, and yet America had it and we didn't. Can you imagine the headlines! Government would do a U-turn at once!

Yet because autism is the "invisible disablity", albeit no less life-affecting, we chug along with sub-standard education and care and even our so-called national autism charity does SOD ALL!

It's a scandal. I keep writing to government begging them to commission an independent study into TEACCH versus ABA . I wonder just how much we are spending / wasting on TEACCH in this country - my guess would be in the very high millions if not a billion. Redirecting even a quarter of that into ABA pre-school early intervention would have a MASSIVE effect on outcomes for children with autism!

DietcokeGirl · 08/04/2011 17:59

Starlight - so we are already using similar methods to ABA then but a slightly different rewards system? I have to say DS1 is not using the PECs much now he has got the hang of letting us know in different ways what he wants. I do have visuals as back up but if I really want him to do something I tend to say 'first we do this, then you get this' and works for lot of things unless he absolutely doesn't want to do it, then it is a nightmare! The reward for 'then you get this' is usually few chocs or dvd etc. A lot of the time he has forgotten about the reward by the time he has done what I have asked. His main issues are that he is mainly non-verbal (tho makes loads of sounds and says the odd word) and getting him to do something he really doesn't want to do - bath, come home from playground, go to nursery (tho when there seems to have good time). Do you think ABA will help? I guess you do from your previous posts!!

StarlightMcKenzie · 08/04/2011 18:13

yes, dietcoke. I'm certain of it. I come across on here as very pro-ABA but if you only knew how reserved and restrained I am being when really I want to shake everyone, hijack every thread and tell them to get going and bloody get a move on.

The thing that holds me back are my own experience and stories such as silverfrog's. Is it kind to convince someone that their only hope for their child is that much grief and agnoy, and not for any miracle either, just basic entitlement that every other child has.

And yet, someone was brutal to me and I simply cannot thank them enough despite having 2 years of hell as a consequence. And when I say hell, it is not something you can imagine. You believe you will do anything to help your child when you start but you really do come face to face with evil, and that is scary. Not individuals (generally) but the whole sorry charade.

moondog · 08/04/2011 18:19

It's important to remember that PECS is a communication system based entirely on the principles of ABA. This is extremely useful for people wanting behaviourally oriented education or SALT for their child because if the powers that be badmouth ABA but endorse SALT, you can respond with that challenge.

'Why therefore do you endorse behaviourally oriented systems based firmly on the principles of ABA then?'

Granted, 90% of them won't know what you mean but it will stop them in their tracks and show them the wool can't be pulled over your eyes.

If you go on a PECS course, they will be talking about Skinner (the granddaddy of all this within 20 mins.) I discussed it with them. They used to be more low key, such was antagonism to ABA but as the huge amount of evidence grows and more and mor people are on board, they can be loud and proud.

I

StarlightMcKenzie · 08/04/2011 18:22

lol Moondog. I tried that one with the LA and school. I said 'you have been told to refuse to engage with ABA in any shape, but yet you use and endorse PECS'

The insisted that PECS was TEACHH and wouldn't entertain any discussion on the matter.

moondog · 08/04/2011 19:09

Jesus Christ.
Did you consider asking PECS for a statement?

DietcokeGirl · 08/04/2011 19:19

Starlight - you very pro-ABA. Really? I hadn't noticed!

Time for Wine

cornwallia · 08/04/2011 19:23

Can you use ABA for high functioning AS children? How would you go about finding someone?

StarlightMcKenzie · 08/04/2011 19:28

No, I didn't. At the time I was fighting a billion fires and that 'win' wouldn't have made a blind bit of difference. In fact, I'm sure that even if I had given them the PECS MD in person they would have refused to believe him.

It is just something the refuse to entertain. I mean, why would any authority fighting so hard against evidence based practise give a damn when you give them hard evidence. It just doesn't figure.

StarlightMcKenzie · 08/04/2011 19:35

corn You can use it with anyone. As with pretty much all intervention (including doing nothing at all) the brightest, most high functioning children will do better overall. This is the same with ABA.

Some might argue that extremely HF children can possibly come out okay despite their inappropriate education. This 'could' be an argument against the funding, but the truth is that they would do a hell of a lot better with properly targetted intervention.

You might be interested to know that my 4yr old ds is considered very HF, with a likely diagnosis of AS, should it even exist in a couple of years time. When he was dx, he was assessed as moderate-severe. He has had 6 months of 20 hours a week of proper ABA and then 6 months of 20 hours a week of a hotch-potch ABA programme. He progressed at 4 times the rate of his peers in all areas accept social where he progressed at twice.

We were told he would be unlikely to toilet train before his teens if at all and would never be understood verbally. He was out of nappies day and night at 3.6 months and has conversations (albiet a bit unnatural and odd) with the other children in his class.

LeninGregg · 08/04/2011 19:39

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Message withdrawn at poster's request.

cornwallia · 08/04/2011 19:42

So where do you start?

moondog · 08/04/2011 19:48

You find someone with an MSc or PhD in ABA (more and more of those about, including myself) and ideally somewone who is BCBA (a board certified behaviour analyst). Very few are emplyed by PCTs or LEAs unfortunately, so for most people they start privately, meaning all but the most determined (or loaded) fall by the wayside.

ABA UK Yahoo group is a good place to vist.
Thehttp://www.bacb.com/ BACB regulate the profession but as yet we have no UK arm.Hoping to establish one in the next few years.

A good few of the people who I did my MSc with were people who had emplyed ABA therapists to worI with their own children, and then decided to get trained themselves.