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.

You don't have to do ABA full time. We did it part time for a while when ds1 was in mainstream school, now he's in special we've stopped. They use a lot of ABA with him (and TEACHH and sensory programmes etc).

If I had my time again I would start ABA at 2 (when we beagn to suspect) and do as much as we could afford (without funding wouldn't be anywhere near a full programme).

ABA is great for teaching, we found it useful for ds1 who pre-ABA couldn't imitate at all (still doesn't really get imitation as such). Without an ability to imitate I would say ABA is best method for teaching.

Some people combine it with other interventions such as RDI or even son-rise (see Growing Minds for that approach- type growing minds and autism into google).
).

Thanks both of you. Baka - when you say you did the programme for less than 40 hours a week, did you do it yourself or get officially trained and use tutors? The reading I've done on the PEACH website and others doesn't ever seem to countenance doing less than 40 hours.

My ds2 has no diagnosis but some autistic traits and social communication difficulties. We have been looking into RDI (relationship development intervention) and we are going on a 4-day training course in London next month. After that we will hopefully get a programme underway. So as yet I have no personal experience of RDI but I have heard a lot of good things about it for autistic children and I know a couple of people who use this board are doing it with their kids. I hestitate to reccommend it whole-heartedly without hands-on experience but it seems to me to be a very promising therapy. I have to say that it is not recommended that you do it in conjunction with ABA as the two approaches are different. I would suggest considering RDI before you decide to undertake an ABA program - they have a very comprehensive website and they run online chats every week if you want to ask questions (although you have to get up in the middle of the night).
I think you would have to put quite a lot of effort into getting it going but a lot of the activities are "lifestyle" so you do them as part of your everyday tasks - something like sorting the washing could be made into an RDI activity.

Message withdrawn

6 months ago if you told me that we would be doing a 30 hour a week program with my son, i would have been aghast. But, we are doing it now. Yep, it was hard work finding and recruiting the therapists, but many of them i found through my ABA provider and the local university.

It dosent have to cost the earth if you can train eager and willing volunteers. As said below too you MUST be the front line manager in terms of supervision. For this we got a cctv camera put in the room and i can watch the sessions on my tv.

Even if we dont get the funding, we can just scrape by in paying the ABA providers as our therapists are mostly volunteers and therefore free.

They are so eager to do this program as they are education or psych students and this work ties in with what they want to learn. You would be surprised what wonderful people there are out there when you go looking.

But yes, its intrusive at first. But after a while when your therapists get trained up you can leave them to do the job and you can get back to your life. Our program has only been going for about 5 months and the therapist come in and get on with it with little interruption. Has it worked? are there benefits?? I cant count them now. 30 hours a week ABA has made a HUGE difference to my little guy, as compared to the initial 10 hrs a week he was getting at first.

You really do need to get the hours in. My boy is sailing through all his programs and learning words every day. I never EVER thought i would see this happening, and in fact was very reluctant to continue with ABA cause nothing was happening. But, this was because we werent providing enough hours. Its amazing to see. The science behind it proves that 30 plus hours is where you see the greatest benefits. Where my son was not able to sit at a desk or imitate AT ALL 4 months ago, he now loves the program and does all his tasks, mastering a few new tasks every week without fail.

Best of all is that he is gaining words!

any more info, would be happy to give you more about our experience. Read the Glen Sallows report to find the "science" behind the hours. You really have to go whole hog with ABA at least for very young children. A piecemeal approach generally will not elicit the great benefits. YOu wont know until you really give it your all. WE did, and i am soooo happy with the results, i can't tell you.

More hours the better Sphil, but we were in a situaiton where ds1 was at school, I didn't want to take him out (we have two other pre-school children- at the time I think we had one other and I was pregnant- and he likes school), and we could only provide what we could afford. We didn't have a provider- we live in the sticks and to pay them to travle to us was out of our price range, but we were lucky enough to find a very experienced tutor- she really was fantastic.

I think the thing to remember as well is that it is not a cure- it will aid your child in reaching their potential, but it is not a guarantee that you will get speech or even anything approaching speech. If your child's maximum potential is to be severely autistic then it is a useful way to teach skills and communicaiton etc but it will not make them high functioning.

Thanks to all of you - I'm off to look at RDI site now. Baka - can I ask what the difference is between a tutor and a provider?

You can also employ consultants to oversee- rather than big providers- often cheaper. We have one near us, who was on maternity leave when I was looking.

Thanks Socci! Haven't looked at it yet (have been researching ABA and RDI all evening) but will do so shortly.

OK - I've spent some time looking at the various websites you've all recommended and I must say, RDI is the one that 'jumps out' at me. I do have a few more questions though - hope you are all still there!
I've just ordered the young childrens manual from Jessica Kingsley but the DVD is so phenomenally expensive - I really don't feel I can justify spending that much when we're just trying to get enough money together to pay for a SLT for DS2. (This isn't meant to sound hard done by at all - I realise we're lucky to be able to afford that.)
Is it essential? The DVD I mean.
Does anyone know whether any more courses are planned in the UK in the near future? The March one is too close to another course DH and I are going to - childcare difficult for us as our families don't live locally.
Who is the best person I can ring to talk about starting up a programme - is there someone here, or do I have to phone the US?
And finally, from reading the archives, I can see that some of you (Baka and MMDDWW I think) were considering doing RDI at one time. Can I ask you what made you change your minds?

A huge thank you to everyone for spending so much time on this.

I think almost everything has been said already. For us the decision to do ABA was purely based on evidence of effectiveness and we were TOLD to do a program by Gilly Baird so that convinced me too! I'm afraid that my advice would be to start with as much ABA as you can and then build in other things as you see progress. Baka has already said that, effective or not, it is not a cure and will not make your child hf if they don't have that inside them already. My DS is still severely autistic, non-verbal and sometimes with challenging behaviour. But I still think ABA brought him a long way, especially in communication, interaction and behaviour. I seriously think that, without ABA, he would not be at home now and would not have been for some years. It helped US so much too, it has become second nature for me to use ABA when I need to. But, as we have a good relationship, I often don't need to or don't choose to. Poor DD, there's nothing she can do that I haven't seen far worse and dealt with before!

I'm not sure I've changed my mind as such. DS1 is now lucky enough to attend a school that almost exactly meets his needs (we're lucky- if we were designing a school to suit him it couldn't have been better- which doesn't mean it will be ideal for every autistic child), so there is less pressure to run a home programme.

Having said that we'll use various techniques at home. We use ABA a lot- every day in some form or another. I've looked at RDI. The courses are I think very expensive, and I still don't really see that many of the acitivites can be used when children are non-verbal. I thought about going on the course this MArch, but a) it was too expensive and b)I thought that probably most people there would have children who were way more able and I'd spend days listening to stuff that was completely irrelevent. I look at RDI every now and then and if I see a game that ds1 would enjoy then we'll try it, but although I keep being told it can be used with non-verbal severely autistic children, everyone I have come across doing it either has a child who is high functioning, (at the very least verbal), or - if their child is at the severer end of the spectrum is using it as an add on to ABA.

My problem is that I don't know where on the spectrum DS2 is. Our paed said that the DISCO couldn't tell us that and that he was too young anyway (from what I've read on here I think she's right.)She said she doesn't think he's severely autistic because he does do quite a lot of social interaction when he has a mind to, shares humour and understands basic emotions. I never know whether to describe him as verbal or non-verbal. He says the odd single word spontaneously, lots more with prompts from songs and stories. But he doesn't use language to communicate - unless you count roaring! So I guess he's non-verbal to all intents and purposes.
To be honest my head is spinning with all of this. We're off to Somerset tonight for a week with my parents and DS2's second BIBIC assessment. Will let it all gently percolate I think...

ABA isn't only for severely autistic children, or autistic children at all! It can be, and in the USA and sometimes in the UK is, used with children who have learning disability and/or behavioural problems, regardless of dx or no dx. A more able child simply gets through things quicker and may start higher up the curriculum. I've seen the most able autistic children I know on a fulltime home ABA program as well as lots of children like my DS. Quite a few have started out "looking" like they are severe and going to be non-verbal and turning out verbal and quite able. As said before, it doesn't mean that ABA will turn any child with autism into a normally functioning genius! But it is all based on the cliche "best outcome" and ALL children show improvements on ABA. Of course it DOES depend on having as good a program and therapists as possible. Its also true that its very possible to do part-time ABA, especially if you have some other provision/component that you don't want to give up and many people are doing this now, but the reality is that as much good ABA as early as possible is going to have the best effect. Good ABA programs can build in all sorts of things related to play, communication, socialisation, sensory, physical, m/s inclusion - basically anything you want but delivered using ABA (even learning the piano!) and, most importantly, everything is data driven, not a case of "erm I think he's doing well at this or that" and someone else not getting the same results - it is all tracked and monitored. As soon as people start speculating without data back up you run into problems imo although things can and do get much less data driven with time and only new/difficult things may be completely data driven.

So I'm sure that's made it sound extremely attractive to you and you can't wait to get started

Sphil

To be honest to really understand RDI at all you need to see the DVD I think. It is five hours long but it made a big difference to my understanding of RDI and convinced me it was worth pursuing. If you can cancel your order for the book, I would do as it is very hard to use in isolation and doesn't really explain the basic principles. Also things have moved on quite a lot since then so it's a bit out of date. It probably would be useful if you decided to pursue it properly but you won't be able to do much with just the book I think.

The Connections Centre would strongly argue that RDI is suitable for non-verbal children - this has been discussed a lot on the online chats and on the chatboard on the connections site. This is where the book is misleading because it gives the impression that RDI consists of series of exercises which I agree require some explanation and understanding. In fact it is much more to do with lifestyle and you could carry it out without specific exercises at all.

The course is quite expensive and as far as I know fully booked now. They run regularly in the States but obviously you would have to fly out. I guess they may do another here depending on the success of this one.

If you have questions to ask I would recommend using the UK board that RnB posted a link to as there are people with a lot of experience there as well as a couple of UK consultants in training.

There should be a possibility of signing up with a consultant here in the UK soon and you could just go with it from there without attending the course although everyone says it makes it easier. Sorry don't know if that really answers your questions - I am not the best person to talk extensively about it as we are only just getting into it ourselves but I have now met a significant number of people (on-line - no-one in real life) who really feel that it has helped their child so I do think it is worth looking into. Hopefully Monica or RnB can add more or the UK board members should be able to help.

Agree with Davros about ABA- I use it with my NT son sometimes. It's an effective teaching technique for anyone!

I know that everyone says that you can use RDI with non-verbal children, but without spending thousands of pounds no-one seems to be very willing to tell me how. 98% of the activities I've been given RDI wise just cannot be used with ds1, and tbh I got fed up of asking and being told "it can be used with non-verbal children" followed by some activity that ds1 wouldn't begin to understand. So I've kind of given up.

I've been having a browse on son-rise recently (Davros! ) as someone is offering ds1 some free sessions and to my surprise a lot of it seems to be behavioural. Ignore challenging behaviours and reward good- it all looked very ABA to me - at least very ABA for the bit I want at the moment (which is a social add on to school - rather than teaching specifics which it appears to be vague about as far as I can tell).

You can get funding for home programmes- but you may need to be able to provide evidence that it is working, ie self fund for say 6 months to a year. The Caudwell Trust (Charity?? - can;t remember the exact title) will fund a son-rise start up programme - no idea if it would provide funds for other home based programmes but worth checking out.

Baka - who did you speak to about RDI for non-verbal children? I have not found the main contact at the connections centre (Jill Galinato) particularly forthcoming about anything, but I'm sure if you posted a question on the connections centre chat board other parents who are using it with their non-verbal children might be more useful. Also I have found the people on the UK RDI board very helpful.

Ds2 is not non-verbal but I don't think he would understand the explanations behind a lot of the activities in the books so I will be disappointed myself if that's all that's on offer.

ABA certainly sound a lot easier to access. And Davros, I'm a bit of a data fan, so you haven't put me off! DS doesn't understand/follow many verbal instructions, apart from simple domestic routines, so maybe RDI should wait for a bit. I'm much more open to ABA now I know that the 40 hours isn't an absolute - DS enjoys nursery,playgroup and Sing and Sign and I'm reluctant to give these up, but they do take up some hours! It's so difficult (I know I KEEP saying this) - do I continue with things he enjoys, which keep him in touch with 'normal life' but which probably aren't helping him to progress in the same way as an intensive programme? Or do I give it all up to give him the best chance of meeting his potential? I just don't know the answer.

Saker I've posted on an email chat list- one of the American ones and an RDI+ABA chat list. One family said that RDI had helped their child understand about no running off, but no-one has been able to give me details of how you do the activities with a non-verbal child. Someone asked a similar question and a reply said that they couldn't really progress form Level 0 or at tops Level 1 without speech. So I don't see how anyone with a non-verbal child could run full time RDI. Sure supplement ABA with RDI, but I can't see how it would replace it particularly. I keep being told I'm wrong about that, but then I never get given any details of how or why so I don't know what to think really.

sphil I would be loathe to give up outside activities if your child enjoys them. One reason I would never take ds1 out of school now is that he enjoys it so much. I didn't really tune into the fact I could do home programmes part time when ds1 was little, but now I wish I'd done one when he was small- although I would still have kept his 2 mornings in nursery- again because he enjoyed it.

I agree, don't give up the outside activities he enjoys. But if you do ABA, you may find that you are able to get more out of them anyway. The whole point of ABA is to generalise and NOT be at home and only able to do things in a certain setting, in a certin way, only with certain people. It was usual to start without the added activities and build them in but it has become much more common to try to merge both ways/needs, esp if a child already has this stuff in place. My DS didn't have any extra things in place when we started as we'd more or less given up as it was always a nightmare, then we went back to doing things and I felt much more able to cope and that he was getting something out of it..... or not, just enjoyment!

Sphil

I'm not trying to put you off doing ABA as that's something I have no experience of. I did consider it at one point but it would have been very hard for us to access without any diagnosis. But just wanted to say that I don't think RDI would be particularly difficult for you to access if you wanted to do that. You would need to get the DVD and watch it, find a consultant (there is one in the UK who we have signed up with and likely to be more very soon plus some of the US ones are prepared to travel) and then you could get started on a program. However I don't think you would be funded at all because it is such new therapy. I don't think it is very easy to do by yourself; that was my initial intention but you really do need some guidance to get started and to assess where your child is.

Baka - I know you are happy with DS1's school and so are not particularly bothered about RDI at the moment but if you did want answers to your questions I could put you in touch with the consultant we have just signed up with. She is very helpful and I am sure that she would be happy to answer any questions about the non-verbal side of things. There are a couple of links on the website that might be interesting to you: here and here . I guess the sort of things that you would do in the first instance would be really simple like peekaboo type games, blowing bubbles, any activity that your child enjoys and that can be used for "emotion sharing". Most of the early work is non-verbal using gestures and facial expressions and Steve Gutstein argues that it is easier to work with non-verbal kids who have not developed speech in isolation, without any of the other aspects of communication.

The whole point of the intial assessment is for the consultant to devise activities that you can do with your child.

Anyway that's all , I won't go on about it any more especially as we haven't really got started yet and I may have to backtrack rapidly after next month.