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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:
NewBlueCoat · 23/02/2014 17:55

Polter, I'm not sure why stating that ABA is the only evidence based approach makes you pissed off, tbh. It is.

I have used many an unscientific, non-evidence based approach myself, and each of them has it's detractors. that's ok by me, because i was happy with what i was doing, and happy to (initially) take a punt on it (having researched as well I could) and then I was happy to carry on because it was working for dd1.

Other people telling me it was a non-evidence based approach didn't make me feel crap, or make me think they were superior, or indeed negate the results I had seen in dd1. but they remain non-evidence based interventions.

PolterGoose · 23/02/2014 17:56

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NewBlueCoat · 23/02/2014 17:59

backforgood - I explained to soapbox why saying 'ABA=controversial' but not expanding on that is a little unhelpful on a thread where a poster is asking for opinions on ABA. Equally, simply stating that ABA = intensive Pavlov's dog methodology is unhelpful, imo.

PolterGoose · 23/02/2014 17:59

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salondon · 23/02/2014 19:26

I haven't read the whole thread. I know nothing about teachh and eclectic. I still don't know what is RDI and son rise. All I know is that 2 years of portage and speech therapy wasn't working for us. I think for two reasons
1- hours put in
2- approach.

1- ABA/vb is typically done 24x7. And a big percentage delivered by autism trained professionals and carers. My portage worker had great ideas but she wasn't trained in autism. And she did 3 hrs/ month. Key worker and I had to do the portage work and salt ourselves. We couldn't match the ABA tutors
2- which brings me to my second point. There is good ABA and bad ABA. If someone saw me do ABA with my daughter today they would dislike ABA.

In our case we had to do a lot of table top work initially. And she was so non compliant, the table top work was done in her bed. Do you see what I mean?

I haven't seen many program's. But ours is very much an intensive play based program that follows the vb mapp. Have we had the same success as some other families. No.

A lot of children are mild/don't have behaviour as hinderance to learning. They would probably thrive in a structured 1-1 setting. Ours would just sit there all day and stim at lights and shadows. Her 'passive' behaviour is her biggest hinderance. She needed to come into our world and that only happened when we did imitation that Sean rhodes' way not the portage or NHS salt or private salt way.

bialystockandbloom · 23/02/2014 19:59

I truly, genuinely cannot understand why anyone does think ABA is controversial - really. If anyone ever saw any of the programme we ran with ds they would not for one minute see anything controversial in it. I think there is such a misunderstanding that ABA is 8 hours a day of forcing a child to sit in a chair and copy adults or something (eg 'Pavlov's dog' - seriously?? Hmm). Nothing could be further from the reality.

The only aspect of it that I can see might run counter to perceived wisdom is that tantrums are (usually) totally ignored - this was, I admit, hard to get my head round at the very beginning of our programme, as the usual way I dealt with behaviour like that was to try and find anything I could to pacify him (without realising that I was reinforcing such behaviour every time I did so) so it was hard to reverse an ingrained habit. Perhaps it's this aspect which is seen as controversial?

Every social communication professional I've encountered (eg SALT, EPs etc) has been positive about it. The only LA support (pre-statement) we had with ds was a four-week social skills course run by a SLT and social comms prof, and the course was entirely run on positive-reinforcement principles.

Also, the programme we have done with ds has incorporated so many strategies and methods that are seen as everyday 'eclectic' strategies for autism (eg social stories, mind-mapping, reinforcement). Such support mechanisms done without the ABA label attached would be seen as run of the mill. Yet done within an ABA programme, somehow they're controversial?

Re the compliance issue - think that is also a bit misunderstood. In the context of ABA, 'compliance' really just means motivation: the early process of engaging the child sufficiently (through nothing more than fun, fun, fun, usually) in order to begin teaching actual skills. It doesn't mean making the child into a robot who obeys anything. It means being able to get the child to a level of engagement whereby he/she is motivated enough so the teacher can meaningfully teach.

I am absolutely not of the view that anything else is rubbish. I have posted countless times about ABA on this board, but never to argue that it is ABA vs the rest, or slagging off any other kinds of therapy or support. And I don't think I've seen that attitude from anyone else here who does/knows about ABA. I just don't understand the polarity about it.

PolterGoose · 23/02/2014 20:03

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roi3ek · 23/02/2014 20:08

I think perhaps I know what soapboxqueen might be referring to. The kind of ABA practiced today is like people on here describe, but there is a darker side to ABA that isn't maybe practiced anymore? I am referring to the strict issuing of commands that kids are to blindly follow, no matter what. I have seen this in action maybe 15 years ago, in a school I visited, where a kid would sit at a table and the therapist would order them to stand up, sit down, stand up, sit down, and the child had to comply. This gave me the willies too. I would never allow my child to become this obedient. (It's not only undignified, it can be also downright dangerous, depending on who is issuing the orders. Plus, who wants to create a robot?)
But I have not seen or heard of this since then. The ABA with my son focuses on life skills, but always respecting the child.

Is this what you were thinking of, soapboxqueen? If not, maybe it would help to clarify so people understand your reservations.

I am sometimes defensive when my son's analyst wants to extinguish a behavior that I consider a lovable quirky thing he does, and nothing more. His individuality has to be preserved, and I am learning to edit myself around the analyst because apparently everything he does is a sign of pathology which I emphatically disagree with.

bialystockandbloom · 23/02/2014 20:18

Thanks polter Blush Smile

bialystockandbloom · 23/02/2014 20:29

ros3ek that (about the school) is pretty shocking. I have never seen anything like that. I really doubt whether that kind of practice happens anywhere now though.

I know what you mean about the pathology thing. Our consultant (and whole team) have always been of the view that as far as possible, anything that interferes with ds functioning as best as he is able should be addressed, but if there's something is a harmless albeit 'inappropriate' part of ds, I wouldn't definitely argue with the consultant about it if he tried to put it on extinction!

Actually, I find that I encounter the kind of pathological 'oh they [ie autistic children] all do that' attitude far more from other 'experts'. Our consultant has always looked at the individual skills/deficits of ds from the aspect of who ds is, rather than from the aspect of an 'autistic child'.

bialystockandbloom · 23/02/2014 20:29

Sorry, roI3ek

bialystockandbloom · 23/02/2014 20:30

Oh fgs, and I meant I would argue with the consultant, not wouldn't

moondog · 23/02/2014 20:32

What Pavlov did with his dogs was called respondent conditioning which is totally different to what occurs in ABA which is referred to as operant conditioning. The reference to this indicates the danger of people who know little about ABA assuming that they do.
Informed commentary , critical or otherwise is to be welcomed as long as one hS basic facts firmly grasped in the first place. As one who had both feet firmly planted in the touchy feely 'eclectic. ' camp for years and now hS both firmly in the ABA camp, I speak with some authority. ABA is essentially what I thought was the approach before I got into this field. Task breakdown , careful data collection and use if scientific principles of behaviour, not ill informed opinion.

PolterGoose · 23/02/2014 20:33

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moondog · 23/02/2014 20:35

Someone earlier referred to the importance of what works for the individual and not extrapolating from statistical data. A behaviourist couldn't agree with you more. We have little interest in statistics which draw conclusions for the population as a whole. This dirt of statistical analysis is generally only carried out to please the detractors. Sometimes you can't win for trying.

moondog · 23/02/2014 20:37

I'm interested in everything. ABA. , AIT, Crystal healing, running over coals. I'll listen to anything anyone has to say. My only criteria is ' where are the data?'
No data, no interest.

moondog · 23/02/2014 20:38

Oh an there isn't good ABA and bad ABA. If it's bad, it ain't ABA.

ConstantCraving · 23/02/2014 20:50

Lemon my DD is so similar to yours - all of what you have described she does, especially the memorising books and retreating into herself at nursery. I haven't tried ABA, but before i realised she had ASD I tried and found reward stuff (sticker charts, bribes etc) just does not work with her, even when done instantly and something she really wants. Have tried re: potty training for poos and she got into such a state with withholding that I haven't tried again Sad. It felt wrong because she really wanted the promised 'reward' and was so upset that she couldn't have it. She is genuinely very, very anxious and fearful about it. Same with eating new foods and this sort of approach made it all worse.

TheBuskersDog · 23/02/2014 21:03

I think there is such a misunderstanding that ABA is 8 hours a day of forcing a child to sit in a chair and copy adults or something
and
I think perhaps I know what soapboxqueen might be referring to. The kind of ABA practiced today is like people on here describe, but there is a darker side to ABA that isn't maybe practiced anymore? I am referring to the strict issuing of commands that kids are to blindly follow, no matter what. I have seen this in action maybe 15 years ago, in a school I visited, where a kid would sit at a table and the therapist would order them to stand up, sit down, stand up, sit down, and the child had to comply. This gave me the willies too. I would never allow my child to become this obedient. (It's not only undignified, it can be also downright dangerous, depending on who is issuing the orders. Plus, who wants to create a robot?)

My son is 21 and when we were looking for ways to help him in the mid-nineties this is how ABA was presented, although it was more commonly known as Lovaas then. It did seem more akin to training an animal or programming a robot, I think lots of parents felt uncomfortable with the idea of using the techniques with their children.

I'm sure the practice has been modified over the years and children are not treated like that now, but I think many of the negative views stem from the past incarnations of the therapy.

SisterChristina · 23/02/2014 21:21

Things were undoubtedly pretty different in the past.

But then no one calls primary schools 'very controversial' today when in the not so distant past humiliation and corporal punishment were par for the course there!

bialystockandbloom · 23/02/2014 21:44

Absolutely agree sisterchristina very good point. Same applies to SS too - wonder how they looked 20 years ago?

zumbaleena · 23/02/2014 22:08

ABA worked extremely well for us and is really a way of life for us now as far as parenting is concerned.

salondon · 23/02/2014 22:39

Moondog - by bad ABA i mean, therapist going -sit stand sit stand for x trials and calling if ABA.

Believe me it's happening in America where ABA is mainstream.

LemonGoby · 23/02/2014 23:00

Hello all, I am amazed at the response my thread has generated, and want to thank everyone who has taken the time to reply. I don't feel it has been derailed, because all the information people have generously shared about their own experiences and opinions, and all of the debate that has ensued, has given me lots to think about and more of an idea about ABA (and perceived pros and cons) than I had previously. Some posts have been particularly helpful/really resonated with me, and I want to reply to some of you properly. I will do so tomorrow as it's late (for me Blush).

Thanks, though. One of the best things has been realising how many others get what we're going through with DD at the moment, as I've been struggling with feelings of isolation/despair over it all. Great to know we're not alone Smile. xx

OP posts:
StarlightMcKingsThree · 23/02/2014 23:24

Constant good ABA will ensure that the demands on the child are small enough incrementally to ensure the reward is ALWAYS given. Withholding a promised reinforcer because you have insisted on compliance with an order too hard, too complex or too ambiguous is IMO barbaric.