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ABA - could/would it work for us?

(131 Posts)
LemonGoby Sat 22-Feb-14 15:22:42

I know many on this board feel ABA is really worthwhile for children with ASD. I don't know much about how it works (am going to start reading up), but I am curious to know if anyone with more knowledge and insight than me thinks it might help my DD.

DD is 3.8 and currently has no diagnosis, but is on the spectrum. This is how she presents, with the areas I am most worried about (and hope we can work on improving)....

She can't hold a back and forth conversation. She has masses of echolalia, both immediate and also her own commentary. She asks an excessive amount of questions of a non-functional nature, that seem to have become a habitual response to statements by others - so if I say, 'Look DD, it's raining really hard', she will follow with, 'And Mummy, is it raining really hard?'. She also asks a lot of questions that she obviously knows the answer to, eg. 'Does it hurt?' if she bangs herself, or 'Am I having toast for breakfast?' when she is already eating it.

I am holding onto the fact that all this, and her endless repetition of scripted conversational topics, do show a desire to communicate, but conversationally it can feel like Groundhog Day. However, on many other occasions it is impossible to get an answer out of her at all. I don't think a lack of understanding is the principle problem (SALT assessment plus the SALT who did her recent ADOS said receptive language was bang on for age, and I feel this is more or less true), but more the issue is that she feels no desire to reciprocate socially and to converse for the pleasure of interacting with another person - she doesn't do small talk! I sometimes feel that she really will only engage if she wants her needs met, or to talk 'at' people about her areas of obsession. Otherwise comments and conversational overtures made by others can be just totally ignored, even when repeated numerous times. She retreats into her own world and this seems more valuable/rewarding for her than sharing ours. Sometimes she appears not to be actually doing anything for ages at a time, just staring off into space, or repeating stories from books to herself.

Similarly, she is very non-compliant unless it is something she already wants to do. She ignores repeated requests (to put boots on/hang up coat/come for meals for example) not just from me but also nursery staff. It is as if she simply doesn't see any value in responding to others and doing things to please/earn approval. I am aware that she is of course still young, but the behaviours seem excessive and particularly entrenched, even for her age. If going on a walk she lags behind, getting further and further away, and shows no desire to walk/share the experience with us. I constantly have this feeling that I wish there was a switch I could flip that would magically 'switch her on', or unlock something.

Reward charts haven't been very successful - she doesn't seem to care enough about or imagine far enough ahead to envisage the proposed reward, or else wants the reward immediately but doesn't see why she should work for it(!). The only things she responds to is the immediate removal of favourite things after bad behaviour.

She has areas of obsessive interest, and seems to be becoming ever more restricted to these as time goes on. Within these areas she occasionally has a little imaginative play/activity/desire to explore, but it is actually very repetitive and restricted, and certain imaginary scenarios with toys that she plays out always follow a precise script. She is obsessed with books/reading, and wants the same ones read to her over and over until she has memorised them verbatim, and thereafter she 'reads' them to herself for ages at a time.

She doesn't like trying new things and often refuses. I think there is some fear of failure there, but also inflexibility and a lack of motivation. I see that she is becoming defiant more often, yet nursery is more concerned by how passive and disengaged she appears there. She is not engaging with other children, but also is very easily distracted and can't focus/zones out. Nursery staff say that without the 1:1 support that they have been trying to give her there to keep her focused on activities and the routines of the day, she would just disappear to the book corner and spend all her time there (this I can well believe).

I know she is still very young, but my gut feeling is that none of this is going to magically get better by itself and that we need to do something to help her. I really fear for her future at the moment.

So, I guess my questions are - could ABA help my DD in these problem areas? If so, how do we go about finding a tutor? Do we interview? For how many hours a week should she have ABA, and for how long? Do you follow a course for weeks/months/years? How do you square ABA tuition with school (she is due to begin Reception in state mainstream in September)? She has no statement. We have applied for statutory assessment though I am assuming we will get turned down and need to appeal.

Any insight into how ABA might/might not be able to improve things for my DD in these areas would be really gratefully received. Thanks for reading!

LemonGoby Sat 22-Feb-14 18:29:13

Bump. Anyone? Sorry, I know post was v long.

soapboxqueen Sat 22-Feb-14 19:01:31

Hi there, my ds sounds exactly like your dd. He is almost 5 now but at the same age he was doing many similar things except with the added excitement of incredibly violent outbursts yay.

I'm afraid I can't help much on the aba front as it is a bit like marmite and I'm defo in the no camp. I hope someone can help.

Just wanted you to know there was someone in the same boat. We are also going through statutory assessment as we speak.

LemonGoby Sat 22-Feb-14 19:38:45

Hi soapbox, thanks for answering. I'm interested to hear your DS was like my DD at the same age. Can I ask how he is now, have any of the similar behaviours changed or (crosses fingers!) improved?

I don't know much about ABA, only what I've read on here, really. Reports here often seem very positive, but it sounds as if you're not keen - can I ask why? What do you feel is not good about it? I'd be interested to know if you don't mind sharing? Also, if not ABA, have you found anything else that has helped your son? I just feel liked really need to be doing something, anything... Thanks smile

Upandatem Sat 22-Feb-14 19:51:12

Message withdrawn at poster's request.

Upandatem Sat 22-Feb-14 19:54:03

Message withdrawn at poster's request.

Spaforaweek Sat 22-Feb-14 20:13:20

She sounds really like my DS age 3 but who is also nearly 5 - paragraphs 3-8 could be about him
We applied for a statement and he now has 1:1 support in mainstream school and it has been good for him

What has helped is finding a school that is really really inclusive, sees him for who he is and actively wants him
So my advice would be to to and meet various SENCOs of your possible schools and see which one you like

If you get going with the statement application you can name your school of choice (we didn't and ours did not come through early enough but luckily school we got is great)
Look on ipsea website: you can do it yourself (sending off request to assess)

We didn't do ABA because of initial cost but lots of people on here know more about it than me and hopefully will be along soon

BTW : DS is much more socially engaged, less echolalia, sentences and conversation progressing. Also understands more about needing to be flexible

I wish I had done a PECS course last year (they travel around so website may show what's near you)
School use timers a lot : I think that has helped. I have seen the Joseph Joseph pie timer mentioned on here

Hope that helps for now will post again if think of anything else

soapboxqueen Sat 22-Feb-14 20:55:22

Aba is very controversial. Those that are keen feel that it is the only way forward with their children. It does produce results but I feel that there are particular aspects of it that are not desirable. In methodology as well ideologically. I'm choosing my words carefully because while I feel very strongly about it, I respect that everyone does their best for their own children.

My ds has made heaps of progress. Since the age of 4 he has been toilet trained, learned to follow instructions (even sometimes when he doesn't want to), I can safely take him to the supermarket for an in out dash (I actually facebooked that it was such an achievement), I can walk him to school knowing if I ask him to stop at the kerb he will. There are loads of everyday things that most people take for granted, that he is achieving. School struggle with him mainly because he needs 1 to 1 support otherwise he is very much on his own agenda.

I agree with upandatem. I found instant reinforcement and removal of items most effective. Reinforcement was and still often is food or physical eg a hug. Words often don't work. Nothing that you wouldn't do with most children but rewards and consequences have to be instant. No point saying you can't go to the park in 10 minutes time as other children of a similar age might understand. The future is nowhere. Reward charts may as well be wall decorations. For a very long time he saw no relation between cause and effect and in many ways still doesn't. However he has learned to expect certain things. So he gets a slow count of 3 for things I don't want him to do and he knows at 3 there will be a consequence. Mostly it is time out but could be removal of something he wants or denial. School use this as well and works for them too.

For a while rewards were hard because he wasn't bothered by that much but loves his iPad. He's taught himself to read using it and loves watching barbie. With that I've managed to get him to stay in bed until 6:30, usually a 5am if not earlier waker.

Most speech and social interactions I've trained him to do but he is starting to remember to do them without prompting now. His speech is still repetitive and he tends to repeat blocks of others peoples speech. Which at times can be funny and cringeworthy in equal measure.

My main focus is to raise my child with as little stress on him as possible but retain his uniqueness. Many, many things cause him to be over stimulated or become distressed as it is. While I know I'm working double time now, I really am not worried about him for the future.

SisterChristina Sat 22-Feb-14 21:02:54

I wouldn't say ABA is 'very controversial'.

There is a lot of completely blinkered prejudice surrounding it though.

It really is little more than using reinforcement and motivation. Plus breaking down tasks into small bits. That's it! There's nothing mystical about it. And there's no reason it can't work for pretty much every child.

And bear in mind it's the only system of learning for asd that has proper research behind it.

If you want to learn more there is an ABA4ALL Facebook page you could check out. And do a search on MN for past threads as there must be hundreds by now, all v informative

soapboxqueen Sat 22-Feb-14 21:13:11

Sister I think it depends on who you talk to.

Defo not for us.

bialystockandbloom Sat 22-Feb-14 21:33:12

If you want to know a bit more about ABA, a good place to start is reading this book by Robert Schramm, or this one.

As a parent who has used an ABA approach for over three years (both as a formal programme, and as a natural way of parenting) I am rather puzzled by soapboxqueen's comments, as essentially, ABA is simply about using reinforcements to motivate a child in order to be able to teach skills. Which is what she (?) says she has done with her child with success, but then says ABA is "not for her".

There is nothing, imo, controversial about ABA, and it can almost certainly be successfully used as a teaching method to address the difficulties you have detailed - which are very similar to those my ds had. Imho your dd would do very well through ABA, particularly if it concentrates on the language/communication aspects.

I'm not sure what the 'undesirable' parts of it are confused, as there has been nothing undesirable in what we have done, but tbh there seems to be rather an anti-ABA feeling here atm I'm scared to post more in fear of being villified. The only downside is the cost, which is a big expense. For us, it was worth the money.

A good way of knowing if ABA might suit you, your family, and your lifestyle, is talking to other families who do it, and if possible, seeing some of in action. If you spoke to a consultant/provider, they might be able to put you in touch with families who do it who would be happy for you to sit in on sessions.

SisterChristina Sat 22-Feb-14 21:44:42

I have spoken to lots of people, and to date the only ones who have been anti ABA have been completely uninformed about the reality of ABA.

TEACCH, on the other hand, gives me the heebee jeebies. Using that methodology would have been catastrophic for my son. Or even worse, an 'eclectic' approach. Without constant motivation (explicitly tailored to his particular likes) ds1 would never have learned a thing. Now he is talking, reading and writing, as well as interacting and playing.

The fundamental of ABA is teaching imitation. With that skill, a whole new world of possibility opens up for a child. And AFAIK only ABA concentrates on imitation. The TEACCH, child-led, model is vastly different.

But yes, speak to families who have used ABA and make up
your own mind. It's not an easy road to take, because the prejudice against it is so ingrained. V sad.

soapboxqueen Sat 22-Feb-14 22:00:39

Bloom aba has its supporters as well as those who don't like it. I'm not sure why you are trying to catch me out by telling me what it is that I am or am not doing. Many methods for raising children have similarities.

I have read and seen some strategies within aba that I think are undesirable. I am not alone in thinking that. There are many people who have autism who do not like it.

However, I do not judge, or dissuade those who think it might help their children. It's just not for us.

PolterGoose Sat 22-Feb-14 22:09:43

Message withdrawn at poster's request.

SisterChristina Sat 22-Feb-14 22:26:16

Polter, I only disparaged TEACCH in relation to my own child. His needs are such that he needed a highly intensive, highly individualised programme of 1:1 help.

TEACCH may well work for other children who have different needs/ abilities.

The lack of research around it does worry me though, and the fact that often a very cheap, diluted form
of it is offered in most special schools/ units.

bialystockandbloom Sat 22-Feb-14 22:40:38

I'm not of the view that it is ABA vs any other support method. Anything that helps is great.

An important thing to note is that an approach such as ABA is not just confined to what happens in school - ABA is simply a view that every person's behaviour can be shaped by how that behaviour is responded to, and that anything can be taught if you figure out how to motivate the learner. That covers not just stuff in school, but every aspect of life.

The thing about TEACHH etc is that these approaches don't necessarily help the parents/family. ABA helped me know how to best help my ds at home, how to help him learn, how to help him develop, to communicate with us, with other children, how to play. And also for us to know how we knew how to parent him in a way which helped him in development, and helped us all in day-to-day life.

Like most families living with autism, we were given nothing from anyone to help us even to cope on a daily basis, let alone anything to help us actually make a difference to ds. ABA was the only thing we found that did that.

bialystockandbloom Sat 22-Feb-14 22:49:05

polter I've just seen quite a few 'ABA-brigade' type comments recently, particularly during that recent upset (which I stayed away from) and the thread on site stuff. Recently it seems (my perception anyway) there is a bit of bad feeling about it. I might be wrong though.

soapbox I'm not trying to catch you out! I was just pointing out that the methods you say you have successfully used with your ds seemed to have much in common with the theory of ABA (ie reinforcement/motivation), yet you were pretty vociferous in your feeling against ABA. So I wondered what you think is so "controversial" and "undesirable" about it.

LemonGoby Sat 22-Feb-14 22:59:26

Sorry this is brief, but thank you so much to everyone who has replied - I am just digesting all your answers and checking out the links to books (thank you bialy). It's interesting to hear different views on approaches to take - now I need to do the research to find out what might be the best fit for us. Something that has really encouraged me is that you all feel you have seen improvements in your DC's following whichever method you have chosen. That gives me great hope and comfort as I've been feeling pretty bleak about the future, so thank you!

bialystockandbloom Sat 22-Feb-14 23:07:31

Lemon sorry your thread was slightly derailed blush

Your description of your dd really is similar to what my ds was like at that age - the echolalia, lack of motivation, rigidity, and retreating into obsessional and repetitive activities really struck a familiar chord. ABA (Verbal Behaviour) really has helped him beyond what I thought was possible at the bleakest points. It is expensive, but really is worth looking into. It is fantastic that you are looking at how you can help her even though you haven't actually had a dx. I hope the Schramm book in particular is useful smile

LemonGoby Sat 22-Feb-14 23:21:58

Bialy, don't worry, it's actually been good to hear several points of view, it's all food for thought! Also it's a relief to hear from others who understand exactly the issues that we are facing - it clears my fog of panic a bit to hear of other children who are/have been similar. Makes me feel less alone! Thanks smile

Cailinrua Sat 22-Feb-14 23:56:03

Lemon, we've used ABA with great effects to deal with such behaviours as you have described. I have 2 Ds's with autism and have been doing ABA now for 2 years. The only disadvantages I can see is the financial cost and at times the intrusion to family life!

My oldest DS had huge issues with non compliance which made our lives- and his very difficult. We tried everything but made little progress. Within a few months ABA had really transformed this and he is a very compliant little boy about 95% of the time! This was massive for us as it meant we could start taking him out more, teach him more etc. because he wasn't constantly focusing all his energy on resisting us, not complying. It has also made his daily life in school much easier and our daily lives much happier.

I am indeed pro ABA as I have seen how well it works first hand. From my experience, the people who are negative about ABA are people who have not experienced it first hand or who are misinformed in some way. ABA does not work miracles- I still have 2 Ds's with many difficulties and challenges, but it does help to tackle each of these challenges as they arise in the best way possible.

soapboxqueen Sun 23-Feb-14 00:07:20

Bloom rewarding and reinforcing good or wanted behaviours isn't new or exclusive to aba. It's common sense and how I would be raising my children asd or not.

It's controversial because not everyone agrees with it and people have very strong feelings for or against it.

I don't particularly want to explain why I don't like aba because I think the conversation will derail what the op wanted. She might decide that aba is right for her and her family. In which case more power to her.

It's just not for us.

I only responded because her dd seemed very similar to my ds and I just wanted to say hi.

Cailinrua Sun 23-Feb-14 00:08:27

Forgot to mention a few practical things. We have done lots of variations of hours, working round nursery, school when needed. E.g when my son was 3 he did 2-3 hours every morning. Once he started nursery he Went to nursery in morning and 3 hours ABA in afternoon. If I was you I would definitely try to get some ABA up and running before she starts school. You have got 6 full months before she needs to be in school and you could get so much good work done in getting her more ready for school. If you feel the ABA is beneficial after 6 months she could go to school and have few hours ABA in the afternoon. It is all up to you to decide.

We found some good tutors by contacting the local university which has a good psychology department. Once we got a programme up and running we made links with other ABA families and would hear when tutors available, leaving etc.

Cailinrua Sun 23-Feb-14 00:25:12

Soapboxqueen, have you tried ABA? Not being cheeky by the way, just wondering. I don't know anybody who has tried it and is then negative about or says it is 'controversial' . I wasn't sure it was for us either, as I didn't fully know how it worked and had been misinformed in ways. Me and DH decided to give it a go for 3 months for our DS. After 3 weeks we knew we had finally found the best way to help him- and we had tried lots of ways and therapies!!! When our youngest DS started showing signs of autism round 2 we started ABA straight away and he in particular has made massive progress in every area.

soapboxqueen Sun 23-Feb-14 00:31:50

No I haven't and I don't intend to. I'm not alone in this. I'm not a lone voice. On here maybe I am but there you go.

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