Parents of children with ASD, Is ABA the answer?

[Slinkysista]

Hi everyone

Doing some research work for university on the pros and cons of ABA in the treatment of ASD.

Was wondering what the general mood was towards ABA amongst parents of children with ASD on this site. Amongst the parents I know personally and from what I have read there seems to be two very distinct camps those who can't praise it highly enough and those who think it is overrated and have ethical concerns about implementing an ABA program ( as in ABA is trying to change their child and is totally unaccepting of what some parents feel are their child's little personality quirks as the Son Rise program, for example, would).

Where do you stand?

Here

This was the 1st course of its kind in Europe althoguh in last five years, many more have started so more and more people getting trained up.

Silver am amazed at what you have gone through.

I used to go on another forum which was very anti-ABA so yes, there are lots of parents who do not like it.

Also agree with you about how all improvements in children are due to them (teachers) but failure is due to the child (learning difficulties)but then I feel that is how a lot of teachers and the profession act nowadays, especially in the state section - yes, I know there are good teachers around it is so easy to blame failure on the children or their families.

I too know all about low expectations but am just too tired to write about them now. I just ignore the limits they place on my child and keep having high expectations (admittedly I lose heart sometimes).

Coming into this thread late, but thought I put our story in too. I don't know if ABA is the answer or not, but this is what ABA has done for us.

DS was diagnosed with classic autism (childhood autism) at 2.5, completely unexpected probably because I had no idea what autism was and DH although knew autism existed, but actually did not know what it meant. Our HV got the ball rolling for us as DS was very difficult and she was coming to visit DD for her usual check ups after birth. I refused to accept the diagnosis and said to the paediatrician they got it wrong. It took about 5 months for us to get a diagnosis. At the time, DS had about 20/30 words the most, but could count and knew all his colours. He did not eat much (only had juice) and his weight was at the bottom 10% for his age, but the GP refused to give any supplement because he was quite tall. He behaviour was very challenging, he did line things up a lot but not obsessively, he was up every night, although we had DD we were trying to attend his every needs, so DD never had me, DH was the mummy to her. Despite getting an early diagnosis we got no help to improve DS's speech, the course we were sent on were below DS's level, so after two of these courses which involved us taking time off work, we got two reports to say that DS was not suitable for those course, he needed to go to higher level courses. We as a parent did nothing to help him either as I did not believe that he had autism and DH did not know what to do (I did not know about mumsnet then). By this time DS was 3.5 and he was refusing to play with other children, not eating, not sleeping, did not acknowledge his sister, so clingy with me that I even went to the loo with him day and night as even night time he woke up if I moved from his sight (he was sleeping on my bed while DD and DH slept on there own).

We moved out of the UK when DS was 3.5 and on the same month we arrived here, I saw an advertisement of somebody who was offering ABA. Being in denial, I had no idea what ABA was ( I did no research into autism I am ashamed to admit now), but by this time I was recognising that DS has serious speech delay as he stayed at the same level of when he was 2.5. So we started him on ABA, 10 hours a week as that is what we could afford at the time. After the initial 6 months, he started eating the same food as us. Although his communication level stayed the same, his behaviour improved dramatically. His separation anxiety was nearly non-existant, he started picking up more words everyday and within 8 months of starting ABA, he was asking us for things in sentences with a please at the end.

DS is now 5.9. He behaviour is much better than our NT daughter, he can communicate very well, although still does not have a conversation. We increased his ABA hours to 30 hours a week because we saw the huge improvement in his social behaviour. He is friendly with an adult (although does not understand the social boundaries), he is comfortable with other kids still playing alongside as he seems to have problem continuing a conversation with them. He can have a one sided conversation, ie, I can ask him questions and he will answer, but he does not participate by asking anything. He still does not understand why questions, but we belive that if we can continue with the ABA, he will get there soon.

DS never had any sensory issues, so taking him out to noisy places was never a problem, but our problem was to make him behave, he would do a runner thinking it's funny, he did not understand the danger. But with ABA, we have been able to get rid of a lot of non-desired behaviour. Only thing I have to say is that in the last two years his speech has not improved as much as we were expecting or hoping for, but his receptive understanding is very good now. He is also learning to read and write quite fast now that we are focusing on education side (we did not try this before because we wanted to deal with challenging behaviour first). It also helps that DS probably does not have any difficulties as he can learn things pretty fast. He still seems to need that one to one to learn, but he is getting so much better at learning in a noisy place or with disruption.

In my minds I have no doubt that DS is where he is now because of ABA and one day he will be able to live a normal life in the NT world because ABA is teaching him the skills. He is still language delayed and still has a long way to go but he will get there and when we go back to the UK if we have to remortgage our home to continue with ABA we will do so without any hesitation.

Sorry for such a long post.

Lenin - in haste as the girls eat breakfast...

there could be a couple of things happening:

1. you are misunderstanding what is rewarding for your ds. you may need to throw away all you understand about "standard" rewards (eg a toy, a day out, an ice cream), and focus on what is intrinsically reawrding for your ds. eg dd1's favourite reinforcer right now, is a light pat to her chest (preferably, sometimes likes top of thigh if sitting next to me) with either left hand or right hand (her choice), while I say "pat, pat". this is not because she cannot access any other toys/games/outings - but if i were to use eg her ipad as a reward, she woudl currently walk away (even thoguh she loves it) - the strength is not there right now. but threaten to withdraw "pat, pat" and she is instantly complying again.

2. the demand you are placing is too great. you amy have to reduce it right down more than you are doing. I don't know your ds, or what demands you are placing, but you might have ot simplify it right down to eg, look at you while you talk to him, or put his shoes in the right place after school -something non-threatening, absolutely within his capability, and that he would normally comply with - you need to prove to him that by complying he will get reinforced (once you have worked out some solid reinforcers - sometimes the start of ABA work will be working on getting eg 5 solid, would-do-anyhting-for reinforcers) - and the easiest way to do this, and bild his trust and confidence in the system is to do it with "easy" demands. aiming too high, because "he shoudl be able to do it" (not saying you are doing this deliberately, btw - it is very easy to do!) is a common problem. ABA breaks tasks down into the tiniest steps imaginable, to achieve work before non-compliance kicks in.

Lenin, we use things like riding a bike as a reward. DS loves it so he gets to do something for us before he got to ride on it. He is now verbal enough to choose his own reward. At the beginning he liked things like spinning toys, tomato ketchup, or playing with water. He also liked muscial toys, so he only had access to them during therapy time.

I am not a parent, but worked as an ABA therapist for about five years before/during becoming a Speech and Language Therapist. To be honest, if there had been a course available for ABA at that time I would have done that but I chose SLT as it was recognised and I could get funding for it etc.

If my child had autism, I would definitely choose an ABA programme but with some caveats.

I worked on a few separate programmes with different providers and did see some things I was uncomfortable with in terms of punishment etc. One of the parents I worked with for the longest period of time is now pursuing accreditation and since starting the course she has seen that many of the concerns we had about her child's programme were really poor application of ABA principles with poor functional analysis and data keeping.

If my child was on an ABA programme I would be very cautious around interventions that caused intense distress and had non-functional punishments e.g. on a programme I worked on, every time a child didn't comply with saying the alphabet in sequence, a box of stickle bricks was thrown out onto the floor and he was hand-over-hand prompted to put them back into the box which sometimes took HOURS with him screaming/wailing and saying it hurt him and was apparently "compliance training". I know that I would not allow this type of thing to happen to my child, nor would I support interventions that involved hours and hours of screaming and physical restraint where it was not really necessary etc.

From what I know now about ABA, some of what I saw was just very bad ABA - actually, in effect, not proper ABA at all. So the evidence base for ABA in terms of literature etc is only one part of the puzzle in answering this question, in my mind. ABA is a powerful technology and like all powerful technologies, if it is used by ethical people who have received effective, reputable training it is an amazing thing. I have seen ABA result in huge changes to children on the spectrum and I do hope one day when I am not knee-deep in nappies and debt to be able to pursue the course that Moondog did.

However, because of the potential power of this particular method, I would still be of the opinion that, as ineffective as many of the alternative therapies offered out there are, it's still important to be awake and aware and critical of all therapies, even if they have a good research base. I would question anything and everything that I didn't feel totally comfortable with, even though I would believe in and promote ABA myself.

Hope this makes sense.

Lenin, you could start by just keeping a log of what your ds does. You can assume that what he is doing, right this second, is the most motivating thing for him right now. Whatever he is holding or touching or where he is standing.

Depending on how distressing it might be (i.e. you don't want to causing him any distress at all, but motivate him to do something you ask) you might be able to remove whatever it is from him, for a split second, ask him to 'touch your nose' and then hand it straight back to him with a big applause and lots of praise for doing as you asked. If he doesn't do it, simply get his hand and help him to touch his nose and then hand him whatever it is he was playing with or doing right back to him.

Hopefully, you can do all this fast enough for it to be over too quick for him to notice or get upset. You practise this a lot. You can then introduce a short pause before you put his hand to his nose, so he'll hopefully see that he may as well just do it himself as it is quicker.

Now, this 'task' has the appearance of 'training a monkey' and I think it sits uncomforbly with some that don't understand, but you aren't teaching him to touch his nose on demand, you are teaching him some very basic,
attainable compliance skills.

From touching his nose on demand, you'll eventually be able to get him to write his name on demand, stop throwing his food on demand, put his shoes on when you ask, leave the playground when you say etc etc.

But you have to do VERY small steps at first.

You observe him over time, what his favourite things are, his favourite rooms, his favourite activities and you remove them from easy access so that you can control when he gets them and how he does.

Yes Working, that is why it is SO dangerous that local authorities are so ignorant and opposed. With proper adoption we can have proper regulation, and proper training for parents and tutors.

Absolutely!

I suppose the thing is that because it's a much more powerful technology than a lot of the other "interventions" out there, its power for good is matched by its power for harm if it's not applied appropriately.

I don't tend to discuss this with people at work because I feel it's my duty to stress the positives of ABA approaches but when it comes to a forum like this where parents are consumers (in a system where becoming a consumer of this therapy is ultra-stressful and involves all sorts of sacrifices and remortgaging etc) I think it's important to share that not all ABA providers know what they are doing, or are even providing true ABA.

Without fail, the bad practices I have seen have involved limied functional analysis and "blanket interventions" (e.g. I was working on 5-6 programmes with the same provider and the kids were all doing the same programmes). To my mind, this isn't really Applied Behavioural Analysis at all but the danger is that because ABA has such good research, that it's easy (in the absence of proper regulation) for providers to say that what they are doing is ABA when it's not. Even where these providers are well-known and reputable etc etc, as in your story, Electra.

The danger with "mainstreaming" ABA, of course, is that it is likely it would become dilute.. and 45 minutes once a half term of ABA would probably be just as useless as 45 minutes once a half term of SLT/OT/Physio/Music Therapy etc.

A major issue in this country is that it's not enough to have the right "named" intervention: it's not just about the evidence base, the protocols dictated by the evidence need to be followed. The gap between the evidence base in "mainstreamed" services and what happens in practice is shocking! So it is a bind.. it would be great if ABA were properly regulated, but would that just mean chipping away at the quality of provision until it was offered in as dilute a fashion as everything else that's offered in the public domain?

I'm not so sure Working. ABA offered as a add on, or compensation for poor alternatives is expensive and competes with the plethora of interventions available. ABA embedded in general practice may not be so dilute.

Another potential solution is perhaps a state-run ABA preschool and nurseries with outreach to the home and then outreach to transition into reception fading until past the notoriously tricky year 1 is completed could be viable. It wouldn't have to be 1:1 all the time and social skills could be taught too.

Working, I wanted to add that sadly, the more I learn about the ABA world the more stories from parents I hear that make me quite nervous. I am so bloody cross with LA's for forcing this situation. Parents look for an alternative because the LA's provision is shoddy and sometimes the result is their children are put at risk, which the LA's then used to justify their own stance. It's a blardy circus.

One of the reasons I chose an ABA consultant with a teaching and pedagogical background was to ensure good practice (Although by no means guaranteed. Not all teachers are good teachers, after all)

Terrific posts 9-5, as always.
I agree with all your points, including those referring to use of ABA that was in fact ill thoguh out and downright abusive.The stickle bricks example is horrific. I would never in a million years involve myself in something liek that, particulalry for something so trivial as reciting the alphabet.

Incorporating ABA into a public sctor model requires seismic change as as you say, and in any case within that context, so much of what is on offer is so diluted that it's useless.

I would like to point out though that BACB (regulating board) take their ethical responsibilities very very seriously indeed and the issue of ethical responsibility is covered in great depth on an MSc in ABA course (far more soIi will add than on a SALT course.)
We know that what we know is so powerful that it is not to be abused.

And incorporating ABA into a public sector model doesn't have to be expensive or dilute. We've done it very successfully with hundreds of people (allied professionals and SALTs) over the last few years. When people start to really understand a bit about ABA and what it can do to effect real change and to make a professional's job easier, more accountable and more effective, everyone likes, no loves it.

As a visitor (teacher) once said, visiting one of the schools i work in 'It makes so much sense. Why aren't we all working like this?'

Thanks for explaining ABA so clearly. This is the first time I have 'got' it when reading about it. I had thought it was about compliance, but didn't understand about the trust and the achievableness.

I think a lot of people have been misled/deceived about what ABA (when correctly used) means.It is the most loving, ethical and child centred approach I know of and I have been in this filed a loooooong time and seen most of what is out there.