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.

I think what I'll do is research both ABA and RDI and then make a decision. Davros, Baka, MMDDWW and Socci - have you any recommendations about how I should start looking for a provider (one that would be sensitive to the fact that I can't do more than 20-30 hours week)? We live in East Sussex. Saker - would it be OK for you to put me in touch with your RDI consultant? Or is best for me to go to the ABA-UK and RDI-UK websites and do it that way?

Have just sent away for a DfEE publication called 'Educational Interventions For Children With Autism: A Literature Review of Recent and Current Research'. Have only skimmed it so far (it's pretty heavy going) but one paragraph leapt out at me.

'Autism is so variable and individuals with an asd so different, that a particular child may benefit from a particular approach at a particular time, regardless of what overall conclusions can be drawn from the research evidence. Teaching is more of an art than a technology (at least, within most educational approaches in the UK) and an inspired and dedicated teacher (whether this is a parent or a professional) can often succeed against the odds, with whatever approach he or she believes in.'

Gave me hope amidst all this uncertainty!

Thanks Saker- I'll check out those links.

Sphil- personally I think if you are going for a part time programme then I would employ a consultant, rather than provider. It's best to get a recommendation though, as, like everything, they vary. I;d recommend joining PEACH and taking it from there.

Hi sphil, it would be good for you to talk to RnB who is doing ABA and RDI. We both started with the same US RDI consultant who come here last September. I have worked as an ABA therapist too so have a good understanding of both. My dd has made huge progress with RDI.I would be happy to answer any questions etc. (both RnB and I are in Brighton). I am seeing her tomorrow so will get her to get herself on here!she will be able to help with advice re providers/consultants/school placements etc. (her ds is 4)

Saker are you on the March workshop? (I think I have spotted you on RDI u.k. too!) I would be happy to update you with our progress if you want to contact me.

Monica - that is great! Thank you so much. I live in Lewes, so am very near. Would love to talk to someone who is combining both methods - it would certainly be one way round my terminal indecisiveness! (Socci, are you near here as well? I would very much like to view your programme if so.)

Feel a bit shy about saying this but would love to meet up with anyone local. We don't have any friends with SN children, which has made me feel a bit isolated (apart from when I come on here). Haven't contacted the East Sussex branch of NAS yet - does anyone belong?

Hi Monica

Yes we are going to the March workshop. Will you be there? I would love to hear how you are doing. I am quite excited about it now. We have signed up with Sharon to be our consultant - I think she will be the first UK qualified consultant and as long as Gutstein et al think Ds2 can benefit from RDI based on the video etc then we will hopefully start a program after the workshop.

yes you would have spotted me on RDI UK - I don't think I have spotted you though. Do you post on there?

ABA can be accessed without a dx. I can only think of one or two organisations that require a dx (UKYAP as they are a research organisation and maybe PEACh, poss Autism Partnership), I'm sure there are several others who don't require dx and many consultants who don't. Until recently there was a very highly regarded ABA consultant almost specialising in ABA for non-ASD children (HITC used him). BTW, if that's the same Sharon that I know well, she has done ABA for YEARS and has a quite hf DD.
Sphil, to find a Consultant/Svs provider you can ask PEACh for a list, ask on ABA-UK or access the ABA-UK files section where there is a list. I also strongly recommend visiting a home program as Socci suggests but try to make sure its a good one! You will have to be tactful. Is there an NAS branch near you? If so it would be worth joining and attending meetings as there are bound to be some ABA parents there or people who know local ABA parents.
I have to say, that quote sounds like a load of unsubstantiated twaddle! Have you looked at the NAS website at the recent Internatinal COnference papers?

Davros

Sharon does have an autistic daughter and I believe has done a lot of ABA but has now moved towards RDI and has actually trained to be a consultant. Her surname starts with B-A. .

Yes, its the same Sharon.

Further to my earlier post, have just discovered that the NAS doesn't have a local group in East Sussex. However, there is the East Sussex Autistic Society which I'll contact after half term.
Davros - how do I access those International Conference papers you mentioned? Went on NAS website last night and found info about conference but no papers.

Hi Sphil

I looked into ABA with my son when a daignosis of ASD became likely but disgarded for several reasons. It wouldn't have been practical in terms of time and cost for several reasons I won't go into. It is hard when you read websites that state things along the line of it's the 'only intervention which helps in ASD' as it really pulls at your emotionally and certainly made me guilty initially for not contemplating it. However after reading about ABA in more detail about it there was something about the whole programme that made me feel very uncomfortable and not the sort of approach I wanted to take with my son. Midst what I read though there would be something that cropped up that did make sense and I think we probably do use some ABA techniques in every day life

I like Hanen very much. It is a child-led which fits into my way of parenting anyway. The More Than Words book is fantastic, can be used for children wherever they are on the spectrum and it's really helped me communicate with my son better and do things that will help his malguage development and social skills. The best thing is that the stretegies are straightforward, not rocket science. I believe that some parts of the country run More Than Words courses (sadly not where I live) and I read a study in a medical journal recently about how much ASD kids improved after their parents attended a course. I also like the Intensive Interaction approach too. See thsi website for more info www.intensiveinteraction.co.uk/ Again it's not rocket science, it's fairly easy to implement at home without vast amounts of training. There's a good book recommended on the website which gives a good grounding in II. The NAS also run day courses on this too.

We are doing Earlybird at the moment which is also proving extremely useful. It seems to cover a mixture of Hanen and ABA approaches. I think one of the most important things that has been said on the course is the need to look for the interventions, behavioural or biomedical, that suit your child. Each child with ASD is different and you have to find the approach that is right for you. That may mean using a variety of approaches. In addition to Hanen and bits of II we also use elements of TEACHH with structure and visual timetables. Using TEACHH on its own would be too rigid but we've chosen the aspects that are helpful to us. Despite not liking ABA as such we do use some of the techniques at home and nursery are implementing some of them as well under the guidance of DS's preschool teacher. I would love to find some more info about using elements of ABA at home in the family to help certain behaviours but from what I've read with ABA you either do the full 40hrs with tutors and supervisors or nothing at all

HTH

Liz x

Hi Liz
Thanks for your post. I do feel very unsure about which way to go at the moment. My instinctive approach is the same as yours - design a programme with bits of various methods to suit my child. The practicalities (and effect on the rest of the family) of setting up an intensive programme are very daunting. However, I've been very impressed by the advice and information I've been given on this thread about ABA and RDI in particular. I guess I just need to go on reading , researching and hopefully meeting up with some people who use different methods.

I've just found out that there is no Earlybird course in our area until Sept. which I'm really disappointed about. I don't want to delay making decisions until then.
How old is your son?

I've never done anything reomtely like 40 hours of ABA with tutors. We used to do a Saturday with a tutor, although the school ds1 is at now uses ABA a lot.

I was also intially put off ABA as I read a lot of negative things about it. Most of them, I realise now, misleading. Right until the first session with our tutor I had apprehensions, and then when I saw it in action wished I had started a programme when I'd initially considered it (when ds1 was 2). If ds3 is autistic I would start a programme straight away. The big thing I hadn't reaslised about ABA is that it is fun. It's also effective.

Agree with Socci about needing people who know what they are doing. One reason we ended up not employing a consultant is because being out in the sticks it was hard to find ones that would travel to us, and of the ones I did find one was on maternity leave and the other had phantom qualifications. I do know people who have found excellent independent consultants though- especially in the SE.

Did you say you are in/near Brighton? You could also contact Pyrammid- and perhaps look at summer school. They are PECS consultants, but the "pyrammid approach" is ABA- their lesson plans include lots of plans for self help skills etc. Andy Bondy, one of the founders is an ABA consultant (in the states). I've always found them to be professional. In fact if we have concerns about ds3 they would be my 1st point of call.

Sphil, I can't find those effing NAS Conference papers either! I've emailed someone to find out where they can be accessed.
Unfortunately there is a LOT of misinformation out there about ABA and what it is really like. Many professionals and parents perpetuate the idea that it is cruel etc. When I was queueing to go into a talk at the NAS conference two other people in the queue were talking about it and saying that its cruel and disrespectful. I very politely told them not to belive everythign they'd heard and that ABA is indivualised and fun and has been proven to be effective and many other interventions haven't..... the talk we went into was by Pat Howlin who proceeded to say exactly that! It is really upsetting (and rather insulting) to hear people characterise those of us who have done programs that way. Basically saying that I don't respect my child and only want him to be cured etc. Some professionals have a vested interest in making it sound awful but many genuinely believe what they have heard and imo are rather irresponsible in spreading it around. Mind you, there are some programs that are not good and parents who are excessive about the whole thing, but I think they're quite rare. Other arguments against doing it are fair enough, cost, space, the rest of the family etc, but "cruel" etc shouldn't be one of them. As Jimjams and Socci say, one of the basic principles is for it to be fun, otherwise it won't work! I think it would have been cruel for us NOT to have done a program with DS as he was ideal for it, right age, no other kids, got LEA funding, TOLD to do it by Gilly Baird etc etc.

Hi Sphyl

My son is four and a bit yrs old. Currently making a big din playing his drum with his daddy! Have also bookmarked the RDI site for a read at a quieter moment.

I guess the comments about ABA not being cruel or misinformation are directed at my comments about finding the ABA approach uncomfortable. I certainly don't think it is cruel, I did quite alot of research into it but it did strike me as a bit like 'programming' the child which made me feel uneasy and not an approach I wanted to take. However our kids are individual and we just have to find the right approach for them whatever that may be. It's good ot ehar about parents here who are having success with ABA. Not particularly talking about ABA here but what I don't like is when one one method whatever that may be being peddled as the only cure-all and intervention for kids with ASD. Have read this claim for a variety of approaches and it's simply not helpful

Liz

I've never even considered ABA to be cruel. My concerns are to do with practicalities and DS2/family balance issues - but now I know it's possible to do ABA part time I'm much more open minded. And as I said in my last post, you lot are VERY persuasive!
Socci - Ive been on the Pyramid website and Dh and I are going to apply for a two day PECs course at Sussex University in June. I didn't realise they are ABA linked - that will be useful.
Of course, there's always the danger that I'll do so much reading and research that I'll never get going on anything....

Liz - we must have been typing our posts together! I guess some people on here have had such success with ABA that they are really enthusiastic about it, and rightly so. If I decide to use ABA, or find a method (or a combination of methods) that works as well with DS2, I'm sure I'll do the same. I'm very glad you joined the thread as I wanted a variety of opinions and experiences.

In preparation for our second visit to BIBIC on Monday, I've been writing out a list of things H can do now, which he couldn't do on our first visit 5 months ago. It runs to two sides of A4, which makes me realise that what we're already doing has been pretty successful. I just want to make sure that we couldn't be doing something even better. And I guess that feeling never stops...

Socci - it really struck me a while back when you mentioned that your dd was seeking out the Christmas presents whereas a year before she didn't even know what they were. Obviously that's not something she was trained to do () but the ABA must have had a knock-on effect in opening up her curiosity and desire to interact with the rest of the world. And that can only be good.