Alternatives to ABA - warning: long and rambling

[sphil]

I'm getting myself in such a dilemma over this. Everything I read, both here and elsewhere, seems to suggest that ABA is the one intervention method with a scientifically proven success rate.The figures quoted on the PEACH website are so impressive and I've read many success stories about the method on here.However,I have to admit that the thought of embarking on such an intensive programme fills me with trepidation.

Some background first. As some of you know, DS2 (3) was diagnosed with ASD last week. For the last 6 months I have been doing a BIBIC / home devised programme with him for two hours every weekday morning. This comprises:
sensory programme
'special time' (non-directed play)
'table time'(directed play)
story and singing time
physical programme (balancing, trampette, rolling ball etc.) - but I haven't done this as much as I should since the winter.
Oh yes, and 'telly time'/'snack time' - his favourites!
We do the sensory programme at weekends but not the other stuff - do outings and things (housework, too many videos) instead.

He has made great progress in 6 months when I think back - is much more willing to communicate (though still uses gestures and sounds more than words), has a much greater attention span, is more prepared to try new things, has learnt to imitate... Yet when I look at his progress day by day it seems painfully slow and he often 'slips back' for a while. I would also say that his autistic behaviours are not really diminishing - he still stims quite a lot, has quite narrow interests, likes repetition and has recently started making more odd noises and looking at things from funny angles. He isn't inflexibly rigid though and doesn't have meltdowns (yet) or particular fixed routines.He takes almost no notice of other children, even his brother, though he is affectionate to us.

To sum him up - he floats along quite happily in his own world, making forays into our world from time to time and seeming to enjoy what he experiences there (he LOVES it when he does manage to communicate successfully) but then retreats again.

My dilemma is this. I am torn between providing the best possible intervention for DS2 and the impact this would have on our family life. We live in a small house with one living room. DS1 is only 4 and in Reception (f/t from Easter). Is it fair to put DS2 first for 40 hours a week? (As I type this I feel really guilty for even thinking it.)

For those of you who've managed to read this far without recourse to strong liquor - please can you tell me:
-any thoughts on the ramble above
-whether anyone has had any success with either a less intensive version of ABA or another intervention programme, eg Hanen or TEACCH
-if there are any negative things about ABA

• if there is a 'type' of autistic child that seems to benefit more from ABA than others.

God- you can tell I used to be a teacher in another life. All these lists...
Really looking forward to your views.

Incidentally I've been looking at Floortime in more detail recently and the Floortime approach only uses actual floortime in short bursts of half an hour- they also advocate using PECS (which is an ABA teaching technique), SALT and OT etc. It surprised me- I'm looking for a kind of sensory based thing to introduce at home, partly because after a day at school ds1 is very highly stung- he often comes in and kneels down and jerks his back for hours if left and I think he needs a kind of active but calming wind down.

I had thought that Floortime and Son-Rise were to all intents and purposes the same- but they're not at all, apart from the imitating your child thing. Floortime has published quite a bit as well(unlike Son-Rise who refuse to) (and also seems to try for a developmental approach as well). Floortime playooms look like fun- swings, ball pools, crash mats etc- it seems to be something a lot of OT's use which makes me think there must be a strong sensory element to it. I must say I am still speaking from ignorance, but it loks as if it might provide me with the sensory stuff I am looking for at the moment.

They sell some cheap(ish) and some expensive(ish) DVD's, am thinking of getting a cheap one to get some ideas

Even if a child does remain non-verbal (like Ds1) ABA in the form of PECS is the only thing that has given him any ability/useful method to communicate. He now requests spontaneously as well (I want garden). By being able to communicate he is able to exercise some real choices.

Incidentally DS1's NHS SALT was very anti the little bit of ABA we were doing- told me it would produce a trained robot (I wish!). I insisted that she watch some videos of our sessions and she came back and said that she had been wrong and was amazed by what she had seen. His other SALT who worked in an autism school was very supportive of using ABA from the word go, she felt that reinforcement is essential when dealing with autism.

Guess what, I I DID NOT want to do an ABA program! DH had to persuade me and then Gilly Baird put the seal on it. I found it very hard work at times but the team also became a very good support for ME and having a set of people who are very interested in your child day-to-day as you are, makes things very much easier in many ways. Learning how to use ABA in a "parental" way iyswim has also paid dividends.
The very first basics taught in an ABA program are Matching and Copying. If you think about it, these are fundamental to a LOT of skills. There is a certain amount of programming but if you describe that instead as repetition, breaking things into small steps, monitoring and assessing, it doesn't sound so bad. I'd rather have a child who can do something through having been programmed originally than not being able to do it at all. DS is far from a success story but I truly believe that his ability to listen, to do things because you want him to (without tangible reinforcement) and his huge receptive vocab are all the bi-products of having been taught other skills/ideas. His ability to communicate non-verbally is SOOOO important (PECs and Makaton) and we would never have got anywhere with toilet training imo without the consistency and back up.
I really don't consider myself evangelical about ABA and I don't really like people who are but on MN its so easy to explain at length and go into detail that it may sound that way. I always tell new parents who get passed on to me (one recently by my Paediatrician, previously by GP, Clinical Psych, EP etc) that they must make up their own minds and look at other things but this is the area I can tell them about and, if they want help with ABA, then I'm only too pleased to do what I can.
We have an extremely friendly and supportive ABA community in my area and we constantly help newer parents but without pressure. I do realise though that plenty of children with ASD do perfectly well without ABA, I just don't think DS would have been one of them.

Just found this- PLAY project . Looks interesting. It is based on Floortime but apparently more sturctured), but also advocates using ABA as well.

Now that is interesting- the PLAY project in its LINKS section provides links to ABA providers and the RDI site.

PMSL Socci- me too. I honestly thought until this week that FLoortime and Son-Rise were the same but they're not at all. Floortime does seem to see itself as something to be used in addition to other stuff, they're not threatened by using ABA or anything, just see it as doing something different.

I think I'm going to get the CD ROM on that website as it looks as if it might be a good way to structure DS1's chill out hour after school.

re 'programming' thing. I think we do that at times anyway, we know that DS will have to be taught things (social skills etc) that other children seem to pick up innately. Getting him to ask another child if he can play with them is such a big thing for him at the moment and something his nursery is working on with repetition and practise. We also try to use a rewards system at home which works. I think it was the degree to which the child seemed 'programmed' for use of a better word that put me off. Some of the American ABA websites seemed quite scary promoting it as a tool to superficially 'fix' the child and make it act superficially normal with entry into mainstream education as a must and criteria for 'success'. To be honest Pavlovian 'dog training' was exactly how it sounded to me initially though after talking to someone who used to work as an ABA tutor I realised there was more to it than that. However things like how stimming or encouraging eye contact was dealt with concerned me. I'm sure my son engages in repetitive behaviours for a reason and he finds stimming a way of self soothing when he's anxious and I'd rather find a why of dealing with his underlying anxiety so he feels less the need, change his environment not necessarily 'conditon' him which was what my conversations with this girl seemed to suggest. Equally with eye contact, I think he genuinely finds it uncomfortable and don't want to be 'encouraging' him to do something that he finds painful because NTs in society dictate is as being 'normal'.

re research: A lot of the Lovaas ABA research I looked at seemed to be dated from the times when ABA used aversives and I'm not sure how representational it is of what is practised today. I also came across a lot of research saying that 10 or 20 hours of ABA a week or using ABA in a child in a preschool environment didn't work and that was the single biggest thing that put me off as it would not have been practical to give the sort of time commitment of 30-40 hours at home. Has there been any reserach comparing 40 hours a week of non-ABA therapy with ABA? I don't remember seeing any? I did wonder how mcuh of the success was simply due to having a group of people spending a lot of individual time focused on this child. My son now gets 3 hours additional funding at nursery for 1-2-1 or small group work and it's only been 4 mths since it's started but he's already reaping the benefit of that individualised time for him. I would wondered if there had been any longterm studies looking at the effect on mental health in the future. I worry that 'encouraging' eye contact or reducing stimming could lead to anxiety problems in later life

I have wondered about whether it is disrespectful for me to post about this in view of the fact that most posters are finding ABA beneficial and I don't want to offend anyone. Apologies if I have. I guess Sphil wanted all perspectives though! I am not anti-intervention by any means, quite the opposite. Whilst I do believe that some of the problems my son will face are due to an intolerant unaccepting society I also am desperate to do whatever I can to maximise his potential and give him the best chance of future happiness.

This thread has been fascinating reading

Liz x

I know I'm in danger of sounding gushing, but this thread is helping me so much. I get excited every time I come on MN to see if anyone has added to the discussion .

The Greenspan book was the first one I read when we suspected DS2 might have ASD. I try to do some floortime every day with DS2, though I'm not very disciplined at doing it exactly as Greenspan suggests - I think I lead/initiate too often instead of following DS2's lead. And I don't do it for anything like long enough - probably 2 x 15mins a day. The Play Project website has made me wonder about doing more, and in a more structured way. The video clips really gave me hope - the changes we have seen in DS2 over the last six months are so similar to the first little boy (he even looks like DS2!) and I would say that we are at a similar attention/interaction level to the second child now, (though not all the time!) Think I will get CDROM - good to see visual examples instead of words. It does sound more structured than Floortime too.

However, I also think that DS2 will need something like ABA to learn skills. He hasn't got the faintest clue about matching and although he has started to imitate sounds he rarely copies actions. It sounds like the two approaches might be compatible.

Socci - not a hijack as I've been worried about this too. DS is on dairy free diet for eczema, but I think his concentration, interaction and sleep definitely improve when we limit bread. Am going to ask at BIBIC on Monday about GF/CF diet though REALLY don't want to do it if we can help it - have just got his diet sorted so he eats a balanced if fairly restricted range of things. Saw a photo on a website the other day of a child who was allergic to gluten - her face looked so similar to the way H's does sometimes - circles under eyes, pale blotchy skin, red ears. Made me think...

Liz - please keep posting - I do want a range of views!

Actually Liz I agree with a lot of what you say. I find US parents of children with ASD a bit scary generally, never mind the ABA ones! It is much more usual there to talk about "cure", "defeat" etc but not in the UK. We never made DS "do" eye contact, in fact I didn't know there was such a program until quite recently. Of course he spontaneously developed excessive eye contact but, as usual with him, things start excessive/inappropriate and die down to more "normal" level. We also don't ban stimming, in fact Lovaas himself says that stimming is necessary and part of ASD. We might try to shape some stims if they're really unacceptable, but if they're just annoying then we put up with it and complain now and then! I have known parents who have tried to prevent all stimming, I used to think they were doing a much better job than me, but it is thankless and pointless, never mind that nasty old word "disrespectful"!!
There has certainly been more work by Lovaas since the aversive days, his first study was followed up, I think in the late 80s and has since been replicated by Glenn Sallows. Of course this research can be picked apart, like most research, and Pat Howlin at that talk did say that there are very few studies with reasonable numbers of children and few that meet all guidelines..... but this is what we have at the moment.
As for programming, I see my NT niece who is 9, trying to learn something she finds difficult and she does need to be drilled, to practice, to repeat etc.
I've also thought for a long time that two key things that work for ABA is the intensity and the 1:1, but you need something to do in that time so having a recognised program with strategies for what to do next, what to do if the child does X, how to deal with behaviours that interfere with learning etc made me feel very secure.

Socci - something I forgot to ask with ref to your post earlier - how do you reinforce non-responsive behaviour?

Sphil

Sorry I only just saw your message asking if it would be okay for me to put you in touch with our RDI consultant. That would be fine I think. CAT me and I'll let you know her details.

Sorry I missed that - I got a bit lost in the ABA discussions .

Thanks Saker - will do that.

Just come back from 1st day of DS2's reassessment at BIBIC - knackered! V interesting talk with SLT who is pretty sure that he has some kind of language production problem (prob verbal dyspraxia) as well as ASD. So good to talk to someone who has years of experience with ASD (unlike our NHS SLT!). Has given us lots of ideas.

DS2 was brilliant. Really bonded quickly with his therapist and was playing ball with her within a few minutes. When we tried to get him to come to the table to do some directed activities he said 'No' and signed 'later'. I was gobsmacked! We use the sign occasionally but I didn't really think he knew what it meant and certainly didn't think he could do it himself.
Sorry - not really relevant to this thread I know..

Are you near me Sphil? We were able to make daily visits to BIBIC..... If so we must MEETUP!!!!!

Ive ordered the PLAY cd ROM- will let you know what I think. I have the RDI DVD as well so can compare.

We live in East Sussex, Baka - but my parents live in a village near Taunton so we stay with them when we go to BIBIC. We're down here quite a lot though - so perhaps we could arrange to meet? Envy you living close to BIBIC - I always mean to have a closer look through their resources and never have time.