ABA - could/would it work for us?

[LemonGoby]

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!

Thank you moondog - I'm no expert but I believe he has mild autism and/or some kind of moderate language disorder. You know, the kind of thing where I've been telling professionals there is is something wrong since he was a year old, and they tell me to go away and wait a little longer. So frustrating. Currently waiting for paed and SLT re-referral, now with nursery fully on side.

We're working with a private SLT at the moment, but the more I read on here about her professional background (TEACCH), the less inspired I am. I think I will give Peach a ring.

If he goes to school as he is now, he will sink without a trace.

Constant, I think eating and pooing are very tricky to address no matter what. It's where young children have ultimate control. And due to the potential health implications I think the one that causes the most transparent anxiety in parents giving the children yet more control.

I doubt you're a crap teacher.

One way we got ds to do the new tricky things was to embed it in easy things at a fast pace.. So 'ds touch your head' yay little reinforcer. 'Turn around' yay bigger reinforcer, 'sit down' yay huge reinforcer 'put small piece of food in mouth' yay, massive reinforcer.

somewhatsilly we started ABA about a month before ds was diagnosed. It had also taken a few months to get it all set up prior to that. I was pretty sure although of course didn't want to believe that ds would get a diagnosis, but even if not, the difficulties he had with interaction and communication particularly needed addressing urgently.

He was 3.6 when we started it, so at 3.4 your ds definitely has not missed out. And imo anytime you start is beneficial.

constantcraving we had the same problem with ds and poo - it took many month after he was toilet trained (for wee) before he was happy to go. We also had a massive reward promised for when he finally did it, but broke it down into tiny steps.

First thing was just spending time in the loo/bathroom to make him happy to be there. So put loads of toys in there, let him put stickers on the wall, played with mini water bombs in the sink. Once he was comfortable to go in, next step was him sitting on the loo (with clothes on). Again, massive reward for sitting. We didn't tell him about the reward before this as it may have been too much pressure - the important thing here was making sure he was totally happy just to be in the loo to start with and not keep trying to escape. I think this is probably the most important thing in the whole process.

Once this was mastered, we let him put a nappy on (he had to ask us) when he needed to poo, but took it off immediately when he'd been. And didn't change it in the conventional nappy-change way (ie on a mat) but sort of stood him up on the loo seat and emptied it into the loo. It was pretty tricky (and bizarre!!) but we mastered a technique! We didn't reward this stage, but didn't make a fuss about it - just did it with no comments at all.

Next step was sitting on the loo to poo, but stilll wearing a nappy. Again, the bizarre standing-on-seat-emptying technique. Another reward for this one.

Next was not letting him wear the nappy, but sort of putting it over the toilet so the poo didn't actually drop in the loo (he was very scared of the noise). Again, another reward when he did this happily.

These last two stages went on for a while iirc, and we realised he was basically doing everything needed, except for the poo going directly into the loo. So we removed the nappy altogether, but put lots of paper into the loo beforehand to muffle any sound. This was the last step, and we were basically completely matter-of-fact about it - just said one day when he said he needed to go "ok ds, this time let's do it with paper instead". MASSIVE reward after this - and for the first time, we told him about the reward before he went. I think it was a packet of smarties he'd got in a party bag, and I just said "ok ds, this time let's do with paper instead and then you can have those smarties".

The other thing we did was give him a step for his feet, as someone told me that it helps to feel grounded and secure physically.

Sorry for epic - and gross! - post. But HTH a bit.

I absolutely agree with those who have said that there is no contradiction between being a proponent of ABA and being a proponent of attachment style parenting. I am no lentil weaver but was fully into attachment parenting from the beginning, baby-wearing, co-sleeping, extended breast feeding, the whole lot...and we are still highly physically affectionate with DS all the time. But we are also very much ABA parents....

bialystockandbloom mammoth but very helpful post . I think I went wrong with promising the reward before trying - so then the pressure was huge, as was the disappointment. I have kind of let the pooing slide as the last time we tried she started withholding, which was traumatic for her and us. She is happy to use the loo for wees, so its not the loo itself, its the process of pooing sitting upright. I've got her a stool, and she wraps a shawl around herself to feel 'safe'. Guess I need to try again but keep it far more low key. Thanks.

I just started to read The Verbal Behavior Approach which someone here recommended (thanks a ton!!, I'm sorry I don't remember your name right now) and it is hugely helpful.

Here is the thing I don't like about ABA: I don't like having strangers come to the house all the time to work with my son, doing basically things that are NOT rocket science. I am getting the feeling that several people on this board agree that with a little training and a lot of knowledge a parent can quite do this on her own, or is this wishful thinking on my part?

Roi I would find it hard to have people in my home too. I think that is a valid concern. I an always surprised at how easily many people forego their privacy when it comes to Intervention if any sort.
ABA is and isn't rocket science. Explained simply it sounds easy but it is underpinned by some rather complex science. My msc in ABA was the most challenging thing I have done intellectually in a long professional career.

It is hard to operate with objective eyes with your own children sometimes- not always. I have designed most of the behavioural interventions I use with my own children but even I pay someone to help me out, although I an more clinically experienced and with better qualifications than her. I need her input and perspective. I'm slim for parents skulking up themselves though and not inflating the already bloated SN industry.

I think they key thing for me is that I realised however rubbish I was, I was still getting better results on my own. I KNOW I'm rubbish and undertrained at the ABA stuff and make lots of mistakes and lack consistency. I know sometimes Ds doesn't always come out too well as a result.

This would be highly unethical EXCEPT for the fact that his mental well being was more at risk if I didn't do it and left it up to even less trained even less consistent poorly trained people with their frankly dangerous attempts to teach Ds skills.

He's now at a special school where they understand his difficulties and his well being is in tact but it is still mass-education and for efficiency they make a lot of assumptions based on his Dx or other kids they have taught with very little evidence it applies to him. The consequence is that though safe, his pace of learning is incredibly slow and as he has to learn so much more than NT children his learning HAS to be supplemented IMO.

I also found the idea of the strangers coming in hard to get used to, (although it is made easier for me by the fact that I am not often at home during the day). But, first, they did not remain strangers for long, they are now much much-valued teachers of my son, and secondly, I would have had bears and tigers roaming my living room if it would have helped him, so I just put up with it....

I personally think this is why even when the LA fund a programme (could be portage or extra HV visits, it doesn't have to be ABA specifically) parents need to have veto over who comes into their home. It's either a fantastic help, or a massive source of stress. It's a bit like the difference between your best mate popping round for a cuppa and that very judgmental HV who you secretly can't stand. The first is fine, the second feels like a terrible invasion of privacy.

Most of DS's ABA style interventions have had to be DIY, simply because of cost. For very young children I actually think that the more the parents can do, the better as I think most v.young kids instinctively learn better with Mummy/daddy than anyone else whatever the gubberment puts out as propaganda for working parents. Also any training I get stays for the benefit of DS forever, whereas outsiders leave and take their knowledge with them.

However I will need an ABA bod for about an hour a week next year to help with emotion skills training as I'll be too close emotionally to a 10-11 year old DS for this task. For it to work I need an outsider to do the objective measurement and assessment. Not all ABA interventions have to involve a stranger in your home for 40 hours a week.

With a disabled child you get less privacy than other parents anyway, the aim is just to retain enough control in order to retain your sanity methinks. LA tickboxy caring carrots are the ones I can't stand for home visits, simply as their purpose for being in my living room is always so unclear.

Forgot to say that where and when I can, I pay for an outsider opinion or advice. The truly unethical thing about what I am trying to do is that I am not being supported by those whose job it is to do so.

Imagine what parents like us with properly trained professionals for consultancy could do for our kids? And it would be so comparatively CHEAP!

Those of you with experience, then, where would you start? If you were beginning from the beginning again?

I'd get myself on a few of the Treehouse courses. I'd pay for the most experienced ABA tutor I could find preferably with an MSc in ABA and book that person for at least two sessions a week to start with and sit in on every session to learn as much as I could.

I'd research consultants carefully and very likely NOT use one of the bigger names as IMO they spread themselves too thinly. Instead I'd use a new-ish one who is keen to build up a reputation and who is contactable. I'd keep costs from consultant visits down by skyping and videoing lots.

I'd read lots of books on the subject.

And absolutely essential. I will be organised and establish a routine for myself.

If your child is preverbal or non-verbal I would recommend the official PECS training course.

That was my introduction to ABA that made me realise it was going to work for us. Though my child was speaking in sentences.........

For my part, I share theDudesmummy's take on this. As much as I like being on my own (I dreamt for years to have a tiny study where I can do my own thing), if foregoing privacy increases my child's chances to a happy life, that's the least I can do. Having said that, we moved into a bigger house outside London to have more space to run the programme (and fairly and squarely given up on the hope of ever getting on the property ladder... yet again).

I also believe the ladies that work with my son (each one whom has a relevant Masters degree) are better qualified to do the tutors' job than I or my wife would ever be. Just like I am better qualified to do my highly skilled job (despite many members of the public disagreeing :]). Six months later, they are indeed valuable and respected members of my son's team, who genuinely care about his progress.

And, while I recognise this being a selfish reason, sometimes we just want to be DS's parents, not his tutors. ABA has given us the ability to be just that and not having to rip my hair out every weekend, watching DS open and close every bloody gate, press buttons and cross the road near every bloody traffic light and enter codes into every single code lock he spots from miles away...

My advice for those considering starting on ABA path is to pay a special attention to the the choice of a consultant, as the quality and amount of supervision you will be subsequently getting is key. You may be better suited than we are to deliver the therapy hours, but unless you are being properly supervised while you are doing so, it may be quite ineffective. This will depend on the rate of progress (+/- the severity of ASD in your child), but in our case we need to alte/add programmes weekly and that would simply be unworkable with the monthly 2 hours of supervision that were offered to us by some of the 'bigger' indy names.

It's worth mentioning here that caudwell children's charity will fund £2000 of Aba (= an hour a week for a year, or a fortnight's advice to get you started)> i know full well this doesn't map to a lot of the advertising that says you need therapists for 40+ hours a week, but it's better than the big fat zero most people can access via the NHS or their LA iyswim.

I work on the basis that something effective is better than nothing at all as I've never been in a position to fund the year's programme that is needed as evidence for a tribunal win. Just thought anyone skint or on benefits reading this thread ought to know that Caudwell Children's charity at least give you the opportunity to dip your toe in the ABA waters.

I also highly rec the courses run by ambitious about autism as a way of finding out for yourself fact from fiction as to what ABA actually entails. I deffo found their courses to be of more direct use than the NAS help plus course I attended as it enabled me to tailor what I was doing for my child's needs in a systemic measurable way.

One of the biggest issues I've found with LA standard provision is that our children are all so VERY different and some of the generic stuff just wasn't relevant or helpful to my son at all.

I try very hard, as does the whole family, to integrate into the ABA programme and do everything according to the right principles, but as was noted above, I really want to be Mummy when I am with him, not a tutor. My working hours mean that I only get a very few hours a week with him and in that time we try to have fun, while of course knowing very well is happening in the programme too. So for example, I won't sit drilling him to do spelling on his computer like the tutors will, but I will, while reading him a story, get him to type words as we read them. And when I make him supper we spell out the words of the food etc etc. And when we go to the zoo we do the signs for all the aninmals, and so on. And of course behavioural plans have to be applied consistently by everyone, family and tutors.

Having said that, if you have the time and the temperament/patience (I don't have any of those things!), it is perfectly possible for parents to do formal "tutoring" work too, which naturally brings down the cost if you are there in the home anyway.

Does ABA cost a grand a week then?!

As far as I can recall we paid:

around £600 per day consultant fees (fee plus travel expenses; for a top of his field consultant who came once every 8-10 weeks)

tutor pay was about £6 per hour (this is going back some - we ran a home programme when dd11 was 3, she's nearly 10 now!) and we had a tutor for between 12 and 16 hours a week.

But I totally agree that parents could do it mostly themselves if necessary/they wanted to. I couldn't. I need the space from dd1, and the ability to 'just' be her mum. And I was lucky we could afford it that way.

I'm the same as thedudesmummy and katky, I don't think I could have done it myself that effectively, certainly at the beginning. It was only from watching what the tutors were doing that I was able to truly learn.

It is obviously a bit strange when someone else is in your house so much of the time, and you do have to get used to it. But only in the same way as a nanny/childminder or au pair would. This was actually part of the recruitment process for us really - whatever tutors we got had to be able to fit in to our family life, again, in much the same way as a nanny/au pair would.

Of course the cost is an undeniably massive factor in being able to do this.... But the other thing about having tutors is that they will accompany the child to nursery/school, which of course parents can't do. And (depending on the kind of skills being taught of course) once the child has got to that level, being able to practice skills such as interaction/communication/play with peers is absolutely key. The kind of programme we did (VB) was 99% Natural Environment Teaching (so no table top stuff at all except for a few academics). It was essential for the tutor to have the opportunities to teach ds amongst his peers, as particularly in his case, interaction and play with other children was one of his biggest difficulties.

Even just joining in with group activities at nursery, or transitioning from one activity to another (another difficulty for him) was only possible for ds when his tutors started shadowing him at nursery. For 18 months he had been at nursery beforehand they had been able to do nothing for him and he was left all day playing with sand or water.

If we had not been able to afford tutors etc I still would have done everything I could myself though - as many have said, it becomes a way of parenting anyway.

Thanks for all the input. I should mention that de has DS as well, and he is a teenager so we are focusing on life skills at this point. If we had to do table top activities that wouldn't work for him at all as he seems to think of me as his mom exclusively. :)

Roi, you might try lo

Roi you might try looking into an ABA based intervention like person centred active support. Incredibly useful, practical , easy to manage and much cheaper than the eibi offered by most private consultants.
We use this a lot with older kids who are, for various reasons, not primarily focussed on academic skills. We have see. Some enormous changes- kids learning to dress, make meals, really get to grips with personal toiletting, that sort of thing. Eibi would emphatically not be appropriate for your da.