ABA and 'recovery' - is it possible?

[RockinSockBunnies]

So, having read Catherine Maurice's 'Let me Hear Your Voice', I was wondering whether, aside from her book, anyone was aware of children who have been wholly recovered from autism through ABA?

The book is great, very inspiring and has a happy ending. Obviously though, no-one knows what has happened subsequently to the children. Are they NT adults? Do they have any residual autistic traits?

Are there any other experiences of ABA being used an actual 'cure'?

[BialystockandBloom]

I don't know, but I do wonder if you took some children diagnosed at the (very) mild end of the spectrum and gave them intensive ABA for a couple of years, whether they'd subsequently be diagnosed. Or just told eg 'ASD traits'/quirky/spd/social communication impairment.

Have you read Robert Schramm - Educate Towards Recovery. The message from this is that ABA/VB is not a cure, but works so effectively (for some children) on the three core impairments that the autism is often barely noticable.

Our ABA consultant has long said that ASD is often given as a catch-all diagnosis, and in a few years the definitions will be much more discretely defined.

Bit off-topic, sorry, and also have to admit I havne't read the book, so might be talking rubbish here. Was the child/ren in the Catherine Maurice book dx with mild/moderate or severe autism?

[asdx2]

My dd now 8 was dx'ed with moderate to severe autism and global development delay at 2 years old. I had put in place an intervention programme six months previously 30 hrs per week not pure ABA but whatever method got the results I wanted because I believe other methods have benefits too. I would never say dd has recovered, but she has no delays anywhere in fact she is quite advanced and the autism is invisible even to the most well trained eye. I think it's more a case that she now has the skills she needs to manage the autism rather than it being cured tbh.She has the odd sensory issue she doesn't like loud noises nor fruity smells but she can cope with them mostly,

[BialystockandBloom]

"I think it's more a case that she now has the skills she needs to manage the autism rather than it being cured tbh."

That's what I was (inarticulately) trying to say about Robert Schramm's theory.

[sickofsocalledexperts]

My theory (and it is just a theory) is that ABA can improve kids by roughly 15%, meaning that if a kid is mild to start with (like Catherine Maurice's?) they can look "cured". But if a child starts at the more severe end, ABA cannot cure, but it can ameliorate the worst bits of the autism. My DSD is as near "cured" as any autistic child I know and really it was just mainstream education that did it, plus the fact that she was mild to start with. For me, the bigger question is - how many kids could be deriving benefits in terms of speech and better behaviour from ABA, and because they aren't getting offered it, they are never getting that 15% gain? And at the severe end that could be a fairly big loss.

Did you know that in the US, every child is diagnosed well before 3, and is then offered by law a package of therapies incl. ABA, OT and SALT - which are often so good that the kid is mainstream-ready by 5. The TEACCH system which prevails in our schools has shown no such gains in any research. I think it's a bit of a scandal actually.

[HelensMelons]

Yes, sickof, different debate but agree, we wait so long for dx, then perhaps/eventually offered a 'little bit of this, or a little bit of that' and we're so desperate for any kind of intervention that come hell or high water we go for it, even if the rest of the family is in turmoil with our arrangements. Sorry rant over!

Sorry for hijack Rockinsockbunnies!

[asdx2]

Dd's progress is in the most part down to the fact she was referred to a paed at 13 months and intervention was started at 17 months. She got an early referral and early dx because I had ds and knew the path to get the dx because of him. Had she been my first I doubt the GP would have referred as soon as she regressed and I expect the paed would have adopted a wait and see approach.

[sickofsocalledexperts]

I think the age at which we diagnose and the hopeless, patronising bunch of substandard services we are offered (too late) are nothing short of scandalous. If it were a physical health issue, and our services lagged so far behind America that kids were actually dying, there would be an outcry. But because autism is the invisible disability, no-one gives a shit.

If one more council professional tells me that ABA will "harm my family life" or that it's "very intensive you know" (said darkly, as if somehow by taking on an ABA tutor I'll be harming my child) I will scream. ABA works: there is proper, clinical research to prove that. Even the most ardent proponents of TEACCH will admit that it has no research backing it up. My theory is that, because TEACCH works a bit with HF autistic kids, and because ABA often takes on and tackles kids at the more severe end, it has become a truism that ABA is only good for severe kids.

The truth is that hf kids like my DSD would thrive with ALMOST ANY intervention - because her speech and IQ were pretty good to start with. So TEACCH just steps in and takes the credit.

As a result, we bumble along in this country with our little TEACCH theories, and our "lovely, caring SEN staff" and assume that the more severe kids (like my DS) were "never going to amount to much anyway, so let's just shove them in a home". Whereas ABA says - no, every kid can improve using our techniques. I truly believe my son would never have spoken a single word without ABA; I also believe he would now be beating me up and still in nappies.

Sorry to rant, but it makes me very sad. I met a mum in the street the other day whose kid will now never speak because she was told ABA was the devil's work. She thinks his TEACCH unit is "lovely", and takes their word for it that really he was never going to talk, so it's all fine.

Sorry to go on, but that makes me ANGRY! That is a kid who has, by the education system itself, been condemned to an insitutionalised life. Maybe he wasn't ever going to speak well, but didn't he deserve a chance at least, with a system like ABA which has been found to get results? The prejudice against ABA totally mystifies me. Any council workers out there who can tell me why they all hate it?

[silverfrog]

totally agree with you sickof.

the establishment we have in common told me that I owuld have to accept that maybe dd1 woudl never talk in public (this after a year of dd1 being totally non-communicative there, while chatting away at home). the head was most unamused when I stood there at pick up time and said in best "loud parenting" voice that actually I thought she should take some responsibility on that one, and that if she had maybe listened to me a little bit, dd1 would actually have made some progress during her time there...

dd1 was dx'd at 2.8ish. ooh early, some may say - but hse had been in the system for nearly 2 years by that point. why the incredible waste of time?

completely agree that if I get told "oh, ABA is quite stressful for the family" I will probably commit murder.

what is stressful for the family is having your child consigned to the scrapheap because they have an ASD dx. what is stressful is not being listened to, when you have found an intervention that works, and being told it is too much work (really? since when was anything "too much work" where our children are involved?), and that families who run programmes fall apart under the stress.

all bollocks, the lot of it.

[RockinSockBunnies]

Thank you! Both of Catherine Maurice's children were on the severe end of the spectrum - no speech, no eye contact, reptitive self-harming behaviours. But, both had intensive ABA from before the age of two, which I think had a huge impact.

We were told by the consultant psychologist that ABA wasn't appropriate for DSS as he's too high-functioning. Having done lots of research, I'm aware that so many 'professionals' talk absolute crap.

DSS is only just diagnosed and he's now aged eight, so in terms of outcome with ABA, I really don't know what's going to happen. But at least we'll be doing something positive, something with proven benefits that might actually make a difference.

[sickofsocalledexperts]

going to PM you about that coffee silver. We can sit and rant about ABA and think about starting our ABA pre-school!

[RockinSockBunnies]

Are any of you lovely ABA people in the London area perchance? I'm fairly new to the ASD world and would love a chat!

[silverfrog]

I am in Surrey, Rockin. Whereabouts in London are you?

sickof - excellent. will look out for it.

[sickofsocalledexperts]

I think any ABA is good, at any age. Sometimes it is as simple as giving parents "permission" to set firm boundaries for our kids (example: no head-butting, even if you are angry!). Pming you rockin.

[BialystockandBloom]

rockin I'm in south London. Feel free to ask anything you want.

IMO I can't see how/why ABA wouldn't work for any child with ASD, no matter how severe. My ds is certainly at the mild/hf end of the spectrum, but a year ago his biggest single difficulty was lack of/poor interaction with his peers (which was why we suspected ASD in the first place). We thought he just had no desire to play with other children. Now he has been equipped with the right skills (especially verbal communication) this is barely a problem anymore (though he still needs help to join in games with 'rules', and still needs modelling correct initiation). This was achieved totally through ABA, in less than six months.

I don't understand the institutional aversion to ABA either. What makes me laugh is that our Early Intervention Officer, who has repeatedly told me our LA "do not fund ABA", agrees with all our targets and says herself that the approach they use is basically the same (positive reinforcement). So why tf would ABA be at odds with the official approach, and why tf would they not fund it? Oh yes - because it's more expensive.

[RockinSockBunnies]

I'm in Ealing.

I really wish that local authorities would employ the use of 'joined-up thinking'. I guess everything is dictated by annual budgets, but surely it's in everyone's economic interest to enable ASD children to become as NT as possible and contribute as much as possible to society? In the long-term, ABA is a way of helping ASD children to achieve their very best. Why LAs cannot understand that, I'll never know.

[Davros]

Sorry, haven't read all of this. I do know a few children who may be considered more-or-less "recovered" who had ABA programmes when younger. I don't think you would have picked any of them out as the ones who would do so well, but I strongly believe they had the potential within them at the outset. I do know that one of them goes to m/s school without support now but can be a nightmare at home. ABA is supposed to teach things that isn't learnt naturally, manage behaviour and bring out full potential. If it does that for each child then there are those who will seem, or will be, recovered.

[asdx2]

Dd wasn't a child that you'd have picked out to do well tbh silent and with a developmental age between 6 and 12 months at age 2. She is in mainstream with a statement but only because she got the statement before age three when she was still significantly delayed nowadays she is well above the expected levels and making double the expected progress but I keep her statement so that I have some control to ensure that any difficulties are addressed.

[HelensMelons]

Yes rockin, it is part of our strategy here in NI to 'join up' our services so that family's don't have to wait a long time for dx, that they get the services they need when they need them and it is all better co-ordinated - no more postcode lottery, however it's all about money really too unfortunately but at least it's a start (trying to feel more positive).

[Fedupandfuming]

The brutal truth is that they only care about this/ next year's budget. Beyond that it'll be someone else's problem. Where my DS might have ended up in teenage/ adulthood with the woeful provision on offer is of absolutely no concern whatsoever to the powers that be.

And I'm told that there are some caring professionals out there, but ultimately your child is a money drain, that has to be managed in the cheapest way possible. Hence the emperor's new clothes situation, whereby all the LA workers all speak as one, glorifying the (to my mind, almost non-existent) benefits of TEACCH and demonising ABA at every opportunity. And boy have they got demonising it down to a fine art.

I'm another one who was cheerfully told that my DS would probably never speak, but I should count myself lucky as 'he's such a handsome boy', and if we keep the lights down low, adapt the environment with the entire aim that he never has to deal with any facet of normal life, and...most crucial of all, we have no fucking expectations of any significant improvements at all, ever, we could save ourselves a great deal of hassle in just accepting the way things were. It's institutionalisation in all but name.

The first SALT session we had involved the woman following DS around...literally crawling on all fours behind him all around the house, copying all of his stims, while he tried his best to dodge her advances. Then she left, content that she'd shown him she could 'enter his world'. Absolute tripe. Lucky I can find the black humour in such things. In fact I had great fun re-enacting her sessions for DH later, after several glasses of wine. But then I wouldn't have been laughing for long if we hadn't successfully fought to get the right sort of provision...

[Agnesdipesto]

I do know a child who is indistinguishable from peers and has no support in mainstream secondary but was very definitely moderate ASD when younger.
My DS has made great progress, slow but steady.
A world away from the lack of progress with TEACCH type outreach methods.
I do think underlying IQ is a factor.
I also believe its fantastic for speech. DS regressed and lost his language and started using words within days of starting aba.
His ABA consultant is based in USA and he says he cannot remember the last child they got into a programme who did not gain speech.
In UK office they have quite a few non verbal children but they do not get them until 6 or 8.
In NHS I doubt its much more than 50% children with moderate or severe asd gain speech.
I am sure if children got aba at 2 or 3 the vast majority would speak.
A recent ICAN email I got said if children gained good language skills by 5.5 they would go on to pass exams etc at same level as peers. After that the gap becomes entrenched. Delaying makes no sense at all.
Our SALT badmouthed ABA but then failed to teach DS a single word in a year. Ditto autism outreach. I am so cross he lost that year.
Still I know we are lucky to have got funding by 4 even though they knew he needed it at 2.5.
Its unbelievable they don't do aba from 2 intensively they would definitely save money later on.
I actually believe that the high functioning children are the ones who are likely to make the best and fastest gains eg be in mainstream with minimal support by 5-7. But agree all children benefit. My DS is a quick learner now and definitely pretty smart but he learnt nothing with the standard offering. We were told to prepare ourselves for severe LD. I think they use that as an excuse for giving poor provision and then say well his IQ must be really low.
What amazes me is that they have taught him things like social interest when he was completely intolerant of other children and indifferent to them. Now he can go up to children and ask them to play. 3 months ago I would not believed that was possible.

[JoMaman]

We are doing ABA/VB and have been having a go at it for nearly 6 months. We've seen gradual improvements in ds1, he's much happier in general, but no sudden leaps forward. I think I notice the improvements less as I see him all day every day, as visitors are always commenting on the big change they see each time.

I often wonder too about how far the progress will go, and I feel anxious about his prospects when I hear/read that how children respond in the first few months of ABA is a good indicator for how they will respond overall... We had a bit of a rocky start (changed consultant, a few periods with less than full team etc), so I tell myself it might be too early to know what the future holds. In the end, whatever improvement is better than none, and I'm committed to our programme as I think it is the right approach for ds1, but any initial hopes I had of some miraculous brief intervention have definitely faded.

[raffle]

Can anyone point me in the direction of an easy to use guide that would explain what ABA is? DS has only had his dx for 1 month so I'm a newbie to the world of ASD. I would be most grateful, thanks.

[BialystockandBloom]

Fedup that is seriously worrying but hilarious

Jomaman I do wonder if the rocky start you had was something to do with it. We're doing VB too, and started last September so about the same time as you. We had a hiccup after a couple of months and had to find a new tutor, which left us with a gap of half the week without a tutor for a month or so. The progress definitely stalled during this point.

I think you're right though about us not seeing the improvements (it's like not being able to see ourselves get older iyswim). Our family and friends who don't see ds that often have noticed a huge change in ds, but we don't see it on a daily basis. But I bet if you think back to what your ds was like say a year ago you'd realise.

Agnes the social interest you talk about is the thing I am most pleased about with my ds. I remember asking our consultant at the start how on earth you could teach someone to want to interact socially - I thought an autistic child just basically didn't want to interact or communicate. He gave a good analogy: say you loved the thought of playing the piano but didn't know how to play it, and practising it was laborious and seemed too much effort. You'd give up, and think in fact you didn't want to play it after all. But if someone showed you a way to practise which was fun, you realised you could do it, and the more you did it the better you got and the more rewarding it became. Bit cheesy but it did make sense to me. I can now see how ds is being equipped with the skills needed to play and interact with other children, and can see how this in itself is reinforcing.

raffle if you can afford it, Robert Schramm Educate Towards Recovery is good. You have to learnt the terminology, but I read it before we started the programme and found it useful.

[Davros]

It is worth bearing in mind that there is a small percentage that will "recover" without intensive input, we were told 2% many years ago AND all interventions work, its just a question of how well and how long. ABA obviously starts to "work" quickly and much is sustained, therefore it has the most evidence of effectiveness (not the same as recovery levels of course).

[JoMaman]

thanks for the encouragement Bialy - I think my defence mechanism is to expect the worst but lately i'm realising that my negative expectations might be affecting our outcomes ! think I need to read a self help book in my spare time (yeah right, like any of us have any of that!)