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ABA - could/would it work for us?

130 replies

LemonGoby · 22/02/2014 15:22

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!

OP posts:
bialystockandbloom · 23/02/2014 00:59

soapbox I can't just can't see how this is helpful. You say you are absolutely against ABA, yet you use the principles on which it is based to good effect.

You're right, the principles behind ABA are not "new and exclusive". No-one has said they are, and that's not a bad thing, surely?! Behavioural analysis goes back many years, and many of the techniques are used in other therapies such as S&LT. The basis is very simple, as SisterChristine has said: motivation and reinforcement. All ABA does is apply that principle to teach skills.

You say it's "controversial" but refuse to say why you think that, because you don't want to derail the OP. But then say you're posting because you want to help her - but she wanted info about ABA.

If you genuinely wanted to help the OP make an informed decision about whether ABA would help her dd, how is it helpful to simply come here and say "ABA is controversial" and you wouldn't ever do it, but refuse to say why, yet simultaneously admit you use ABA methods successfully?Confused

In nearly four years of researching and doing ABA in practice, the only opposition I have ever come across is from Local Authority/School staff who know nothing about it but think it's going to cost them money.

aagashi · 23/02/2014 01:16

I was the one who against ABA initially !! but Now I love it and I must say that ABA is the only one that help my little one the most.

Again, ABA is not for everybody. I have been doing all the methods out there in the market with my son, I tried most of them now I think. I found that ABA work best so far. I have been doing ABA for about 8 months now, my little boy made a massive progress and I am now trying to get ABA funding for home programme from LEA.

I would not say that others methodS are not good but They were not good enough for my son to make the progress that needed. All others methodof teaching helped him in some way.

ABA can be indiviualised for your child and consultant will do that for you. If you just want to try and worry about the cost, why not check to see if you can claim £2000 from Caudwell Children first and if you find it does help then you can continue with it, if not then just leave it. every child is different.

Good Luck.

soapboxqueen · 23/02/2014 01:20

Sorry. I was just trying to reach out to someone who was experiencing similar things to myself. Shall use restraint next time.

Controversial means that not everyone agrees with something. Which even a quick google search will show many who do and don't agree.

I said I did not like aba because of some issues not all. Is that so hard? Do you need me to agree with you?

I tried to keep my answers brief because I did not want to derail. I think that the op wants to try it so what use would there be for me to add more about what I think? It is my personal choice.

I entirely agree that the reason leas don't fund it is financial rather than because of any strongly held beliefs. However, when is that not the case.

StarlightMcKingsThree · 23/02/2014 07:36

ABA is finding out what a child loves best in the whole world and giving it to them in abundance, changing that thing as they get fed up and love something else better. In between giving them the things they love you drop in teeny but targeted learning demands which they barely notice. You tailor those learning demands to be as fun as possible and linked to the child's interests.

Ideally the new skills will BECOME what they love most in the world for a while so you can then slip in newer skills to learn in between.

When I first researched ABA my biggest question was how do I reconcile it with attachment parenting? ABAers expressed Confused and after a week in I realised it was actually the best chance at attachment parenting I had with a child with ASD. Our relationship became on of joy and fun instead of frustration and distance.

NewBlueCoat · 23/02/2014 08:43

I will come back later and add my thoughts on using ABA (although others have written about it far better than I could) but would like to quickly add:

Soapboxqueen, many ears ago when I was researching around methods and trying to decide whether ABA was for us (and more importantly, whether it was for dd), I found it useful o know fully what others thought. Both positive and negative.

I didn't want to read thread after thread of only positive experiences. I wanted to know what others had found to be negative too. "It isn't for us" is an opinion, sure, but not a terribly useful one for someone trim go weigh up the pros and cons. I needed to read the negatives, to see whether they were what I would count as a negative too (some were, some weren't). I needed to know what was vehement disagreed with, or what people found controversial, to see whether I could live with that, or possibly guard against that, or just not go there at all.

The only people I have ever come across who say "oh that's controversial" without ever being able to give specific examples of what they dislike are, like Bialystock (I think) the LA. because they didn't actually have a concrete reason, other than not wanting to pay.

I have no problem with people criticising ABA. I researched long and hard, and have ensured to the best of my ability that the practitioners who are involved with my dd have a similar outlook to me, and would not do anything I disagree with. Incidentally, without reading about what other people found difficult or distasteful about ABA I would not use been able to make the choices I did make. I rejected a good any practitioners because I did not
Like what i saw or the answers they gave me. But without knowing what to ask, or what to look for and guard against, I could have ended up in a big mess.

Now, that wasn't brief or quick, sorry Grin, and I need to go and sort out the dc.

soapboxqueen · 23/02/2014 10:21

You make a good point there newbluecoat. I shall have a ponder.

PolterGoose · 23/02/2014 10:28

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NewBlueCoat · 23/02/2014 10:38

yes, Polter, I worry about compliance too.

there is some of it which has to happen (eg in our family life, dd1 has to go to school (home ed is not for us!), and part of that means she has to follow the school rules as far as she is able)

and there is some which does not (100% compliance at all times in all situations. recently, dd had an issue at school with a tutor. it is ongoing. the problem with the situation is that dd1 should never have been placed in the situation in the first place, as it was 'unwinnable' without dodgy practice (imo) - either dd1's views get ignored and she works with the tutor, or she gets to ignore the demand placed (that she works with her scheduled tutor) - neither a good outcome. I have spoken to the school and am satisfied with their response)

it is easy to fall into the trap of seeking 100% compliance (or thinking that this is what is sought), but of course that is not reallife, and I think it leads to the 'oh, but ABA means your child will end up like a robot' school of thought.

I certainly met practitioners in my original hunt where I thought that they would be 'demand placed, it must be followed through' people, and I wasn't all that convinced that they had a good grasp on why it was important that not all demands are followed unquestioningly. I ran a mile. Fast.

StarlightMcKingsThree · 23/02/2014 10:45

Polter, picking what works for your child is essential. What an ABA programme gives you is evidence to PROOVE to schools and professionals that they MUST also do what you know works.

Eclectic isn't bad it just isn't so precise in a way that can easily be replicated across settings and the lack of data means people who have promised to do things or do them in a certain way can get complacent, or be guided by their own inexperienced opinion, mood on the day or just decide they think the whole thing is a stupid idea or hardwork.

StarlightMcKingsThree · 23/02/2014 10:50

Over compliance = vulnerability. The child needs to be able to express their discomforts and preferences. But without some you cannot teach and they may not develop the skills to express themselves so others understand. It is indeed an ethical issue.

NewBlueCoat · 23/02/2014 11:01

THe reason I was so happy to 'find' ABA even existed was that it was a 'formal' version of what I had already been (unknowingly) doing with dd1.

ANd I took her from being an infant who was so closed in that she did nothing all day (literally), was scared of everything, would shriek and howl with frustration and unhappiness and sheer over-whelmed-ness whenever we tried to do anything actually involving her, or remain switched off and non-responsive (honestly virtually catatonic) if we left her alone, to being a toddler who was interacting with the (small) world, albeit on her own terms. who had a deep interest in books and a passion about singing. who could communicate basic needs (and still shriek and howl).

SO I thought I wasn't too bad a job, but wanted more experience to help me stop feeling so out of my depth.

ANd then I tried the 'experts' way (ie LA way), and they weren't doing everythign I knew would work with dd1, and were doing everything I knew wouldn't work. ANd they were calling it a success because she wasn't howling and shrieking anymore. BUt they were failing to recognise that she had stopped howling and shrieking because hse had given up - there was no point, as no one was listening to her. SO she retreated back to her closed-in world, doing virtually nothing, and certainly learning nothing, and everyone involved hailed it as the greatest success ever (ie she was no longer a 'problem' in their setting, and so all was fine)

So I ran from that. Fast.

Maybe in a different place I would have found people in mainstream settings would could have met dd1's needs. who knows.

I don't dislike an eclectic approach as such. we do a variety of different things with dd1 in a variety of different ways. I dislike 'eclectic approach' being used as a catch-all for 'we don;t really know what to do with a child like yours, and so we will concentrate on making her as little a problem to us and our setting as possible, rather than concnetrating on meeting her needs so that she becomes less of a problem to us and our setting'. which is unfortunately what I encountered everytime 'ecelctic approach' was used to me regarding dd1's education.

PolterGoose · 23/02/2014 11:29

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NewBlueCoat · 23/02/2014 11:49

yes, POlter, I agree. ANd that is what led me to make my initial post on this thread. I was doing what I was doing with dd1. And then I found out it was a 'proper' thing.

And then I found out it was controversial, and I was Confused - it all seemed fine to me, Iw as quite sure I wasn't a child abuser, dd1 wasn't too distressed (she didn't always like it, much like she still doesn't always like it when I say 'no more cake' etc - all part of parenting, innit?)

ANd so reading up on what people found controversial, and didn't like, was a big part of my decision as to whether to 'go formal' with ABA or not. I needed to know whether it was a difference in outlook (I know some parents who never say 'no more cake', for eg, and it is not the way I want to parent) or something to concern myself with.

theDudesmummy · 23/02/2014 15:51

In terms of academic, peer-reviewed research, ABS is far from controversial, it is the only scientifically-based evidence-based approach to ASD (and I speak as a scientist as well as the mother of an autistic child).

PolterGoose · 23/02/2014 16:02

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autumnsmum · 23/02/2014 16:22

I have to say polter is speaking wisely I don't know anything much about Aba but I will say my dd 2 is progressing well at her la run special school nursery which uses a variety of approaches

SisterChristina · 23/02/2014 16:54

I think the frustrating thing is, autumnsmum, that no one ever says TEACCH (for example) is 'highly controversial', even though there are many who don't agree with its principles.

There seems to be something inexplicably emotive about the acronym ABA, and those of us who can see what it has done for our children find that utterly bewildering. And that's why it's fair enough to point out that it HAS been very thoroughly researched and peer reviewed. Unlike other methods. And still people remain prejudiced.

If TEACCH works for you then that's great. I'm sure it helps many, many children. It must be a lovely feeling not to have to go against the grain all the time and battle the endemic and systemic prejudice that is there against ABA. Fighting against that is exhausting and soul destroying. And it really, really shouldn't be that way.

Kakty3 · 23/02/2014 17:02

You need to appreciate what a scientific method is before you can understand why theDudesmummy said what she did.

PolterGoose · 23/02/2014 17:04

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BackforGood · 23/02/2014 17:17

Not sure why Soapbox is getting such criticism on here. Her post was honest, polite, fair to say that ABA is popular with some, but theres no doubt that it is controversial. There are a lot of people that dont like the whole intensive 'Pavlov dogs' type methodology, and yet there are plenty of others who say it has worked incredibly well ffor them. That = controversy...... people having different opinions about things.

SisterChristina · 23/02/2014 17:20

So by the same token why is Teacch/ eclectic not controversial?

SisterChristina · 23/02/2014 17:22

ABA is NOT 'pavlov dogs' methodology! Is this really what people still believe?

That's what's patronising Hmm

NewBlueCoat · 23/02/2014 17:45

Backforgood - do,you really th.ink that everyone who uses ABA is simply employing 'Pavlov's dog methodology'? And could you explain a little more exactly what you find so distasteful about that?

Upandatem · 23/02/2014 17:51

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BackforGood · 23/02/2014 17:53

You are jumping to conclusions that I don't like it.

All my post said was that there are a lot of people who think that, (I and meet them regularly in my working life) and there are equally a lot of people that hold completely different views, thereby making it (like soapbox said) controversial.