Is this really what ABA is like, because I'm not convinced.

[ABAconcerns]

Namechanged for this because I don't want to identify myself. I have been investigating ABA in some detail recently as so many posters say it has been very helpful for their dc so thought it might be worth a whirl. I have met with a consultant, been to see some programmes in the area and talked with parents doing it. I was a bit bothered by some of the ways that "behaviours" were spoken about and acted upon. Here were my concerns about what I saw..

• One boy was in his teens and obviously very severely affected by his autism although he can talk. He was doing very nice stuff with baking and seemed to enjoy it but once or twice he did a stim, just a very very minor one with his hands, rubbing his fingers together. The consultant lady looked at him - I am not joking - like he was dirt and said "Ew, what's that weird thing you're doing?" and he stopped. She said "what do we call that?" and he said "stim" and she asked him should he do it. He said no and asked him why and he said "it's weird, people won't want to be near me".
  
• Another programme was for a boy who was the same age as my own, he was nonverbal but went over to a therapist and pulled her arm and said "buh buh buh". It really looked to me as though he was trying to get her attention to play, he looked right at her and said "buh buh buh" and was laughing and really engaged and she took the toy he had off him because he is "not allowed" to make this noise as it would "frighten people in the community". " She took the toy off him and said "uh uh, WEIRD" and waited until he was silent and gave him back.
  
• I also saw a parent told that her son shouldn't do drama even though he really likes it because it won't help him make as many friends as doing football so rather than do drama, he should be trained to enjoy football and only have what he likes and is good as as a reward which will be faded?? I mean, really? The idea was more boys like football, and doing drama as a boy can be "stigmatising" (really????).
  

-Another boy was told that this minor clicky noise he was making in his throat was a stim and weird and he said on cue that he shouldn't do it because people wouldn't want to be his friend if he did something weird like that.
-There was also this really weird situation where a child had to be restrained but the therapist couldn't do it because she hasn't been given appropriate training as the provider only pays for its own staff to do the training despite the staff being mainly independent.. so she had to call in this child's mother to do restraint as that's what the treatment programme calls for and the mother can't afford restraint training as they are paying out so much for ABA.


I've read a lot about ABA and on this board and it's not really what I was expecting. It "worked" in that the kids stopped doing whatever they were doing but it's a horrible message - what you are doing is "weird" and you are "weird". I thought our kids were supposed to be prone to anxiety and depression, how is this helping them?

This was a major provider by the way, they are "international leaders" in the field etc. I was expecting to see something a lot better than this from all the stuff I'd read about it, I thought it would be really positive and the social skills stuff would be positive, but it mainly seemed to me like they were being told they were weird and that everything they were doing was wrong but they put up with it because they got some crappy toy at the end of it. I have a social work background and it just seemed.. some of it.. well, abusive.

Is this typical? Do your programmes do all this? Because you know that's not what it seems like at all on this board so if that's what is happening people need to be a bit more transparent about it because I feel I've wasted a load of time being told this is the evidence based etc and expecting to see this wonder treatment but frankly, I've left thinking the end does not always justify the means. I don't like the idea of any kid being told they are weird for being autistic, it engrages me.. they have a neurological problem for God's sake

[silverfrog]

I am confused as to why you would need to namechange to post this. Odd.

None of the home programmes (for dd1 or dd2, using different consultants at different times) nor either of the ABA schools that dd1 has been to/is going to have ever done anything like you have described.

I would suggest you find a different provider, and observe a range of programmes, preferably from a range of providers/under different consultants.

[IndigoBell]

Maybe if you say what part of the country you are in, people here could give you some recommendations for ABA providers?

[graciousenid]

I haven't seen anything liked this - I've observed five programmes locally (which covers a variety of providers - PEACH, YAP, Sean Rhodes & CEIEC - most of us share tutors despite having different approaches & providers ~ it's a small world!), in addition to all the online people I know & haven't come across anything like that. If you're not happy with the way a provider or consultant works then look at someone else, there are lots around.

Curious about the provider tbh I haven't heard anyone describe themselves as an 'international leader'. Were these home programmes you were observing?

[ABAconcerns]

Hi
Namechanged for a variety of reasons, one because I think some people recognise me on this board from SEN groups in RL etc and I don't want to get into this discussion with them, also because I want to be able to come back without being tarred as being "anti-ABA" as I feel happens here sometimes. I don't think it's that odd at all really because it is a very small world and people who have recommended ABA to me have been very scathing about other approaches etc and I don't particularly want to get into anything political with them, we are all only trying our best.

The provider was Autism Partnership - I thought they were supposed to be very reputable, certainly their webpage etc seems very professional and they seem to have been involved with the original people doing ABA. I am not in London.

Gracious, all home programmes because I'm more interested in life skill stuff than academics at the moment.

What does happen with stim in programmes? There were two consultants involved in these programmes so I reckoned it was more ther "policy". I don't really like the idea of branding what children do as weird, is this typical? For people who haven't seen this, are you all based down South?

[ABAconcerns]

This is my question too zzzzz.

On AP's website it says:
"How do I know if Autism Partnership UK is a right fit for our family?
We are not the agency for you if you are interested in: using a variety of treatments that do not adhere to a behavioural model, following an eclectic approach, not making treatment decisions based on solid research, or not participating in the intervention process, including parent training.

We are the agency for you if you are interested in: utilizing treatment strategies that are scientifically supported and presented in an age-appropriate manner, working with professionals who have been providing effective ABA treatment since the 1970's with students on the autism spectrum, and actively participating in the process by learning all you can to effectively relate to and respond to your child. If you have high expectations for your child's future, we would like to be a partner with you in their treatment process. "

The second bit sounded brill to me but what I saw in practice just seemed a lot different to this. They seem to be pretty much against all other approaches and this sort of concerns me given what I saw, because it's like they are isolating themselves a bit. I was really unhappy that they don't give child protection training to their staff and don't ensure all staff have restraint training if this is what they are asking staff to do.. because I wonder how it works if the parent can't come straight away etc...

[willowthecat]

No, it does not sound like ABA as I have experienced it. The only thing that comes out of what you are saying is that it is true that ABA can have a different perspective on what is meant by 'acceptance'. Some people think that an autistic child should not 'have to' change any behaviour in any circumstances and that everything should be accepted as the 'autistic condition' An ABA therapist might by contrast try to find ways to help the child learn new skills and new social behaviours - but this should not be construed as contravening acceptance. If an NT child has innappropriate behaviours, we would not say that we cannot change the behaviours in case someone thinks we are not accepting our child. But in my experience, the teaching of new social skills has only ever been done in a very positive and engaging way. I do use other approaches as well as ABA though and I would not want to be made to feel everything has to be ABA.

[willowthecat]

I was not referring to the incidents in the OP but just trying to explain the underlying rationale of what better ABA practice might be. If the child has the level of social understanding to understand the concept of weird, then a better approach might be to explain general social rules and how to make friends. A lot is going to depend on age and social capacity as obviously you may say that not everyone whether autistic or not wants to make friends. But at that level, it sounds as if it is something for the child or young adult to decide.

[willowthecat]

The advertising you mention sounds daft - would be enough to put anyone off. I have always blended ABA with more general approaches such as Hanen

[ABAconcerns]

Well I don't believe that a child shouldn't change in any circumstance at all willowthecat, and I wouldn't be looking at an educational intervention if I did I guess. I'm not one for the whole "embrace the rainbow", don't love autism though I love my child.

To draw a crude analogy, we all have to teach our kids not to play with themselves in public but that doesn't mean we have to go on at them about how filthy and dirty and rude it is and everyone will think they are perverted etc.. I've no problem with teaching boundaries about things because I know there are circumstances where people might e.g. really bully a child for some behaviours etc and it is probably good to have some control over it if you're at a level to be able to do that.. but telling a child not to do it because it makes them weird is like telling a child that touching themselves is wrong and dirty, it's just going to make them feel bad about something that is natural to them.

I also had some concerns about what was classed as stim, maybe the little boy was babbling, why would you stop him vocalising? They said it was "stigmatising in the community" but being nonverbal at 8 is surely a bigger factor here and he's been doing this programme for years so I'm guessing that even though he may be making progress, it's not going to change so much that saying buh a few times is the only reason that nasty bullies in the street will look and stare, just didn't see what it would achieve to "work on" it.

They also really wanted me to say how crap I thought everything was e.g. visuals and stuff but some of this has been very helpful and has worked for us, it's not been as rubbish as they say at all. with one of the consultants, I felt like I was in a pitch, like a timeshare or something. It all seemed to me that you either had to buy into it 100% and be fully on board that everything is a behaviour or you couldn't do it at all. This seems a bit mad to me. I thought it would be about addressing behaviour but these particular people seemed to see everything as behaviour and I'm not sure about this. We have a very good independent SALT who has done wonders for language etc but I got the impression they would want most of his language to be done by them and just kind of rubbished what she'd been doing.. even though they didn't really know why or what it had done for him.. hmmmmm.

[willowthecat]

I wouldn't want anyone to claim ownership of a child's development or to totally rule out other approaches so it does sound as if you should just leave this provider and look elsewhere. What to 'do' if anything about stims is very contraversial - some say it's necessary for self soothing, others say is a sign of unengaged boredom but you won't be able to reach a conclusion by a formula , you have to observe how and why your child stims.

[graciousenid]

Ok. One of my current tutors worked on an AP programme (she left because the family moved) - from what she has described the programme was entirely play based. My supervisor has also worked with AP he prefers to work on other programme as he feels they are too prescriptive for HF children ... that's purely anecdotal, I don't have any direct experience.

ds doesn't stim so we've never had a stim programme - I don't know what a typical approach would be.

We've been working on social skills recently & it is difficult, it is pretty much all we work on right now. It takes masses of exposure for as much practise as possible - ds is out everyday, in groups/soft play/visits etc. We model, practise individual skills, lots of intra-verbal stuff so he has something to talk about, highly motivating locations (museums) & play activities so his responsiveness is very high to start with (and the other kids want to play with him because he always does really cool stuff). We do lots of work with him at home talking about what he likes, what we like etc, making sure he's aware of peer appropriate stuff e.g. so when all the kids at soft play are playing a game based on Cars 2 he can join in because he knows about Cars 2 (we take him to the cinema when a new film comes out & buy him a couple of related toys). Masses of prompting - without prompting ds will respond to peers (at all or appropriately) 50% of the time (that's in a highly motivating environment when he's bored e.g. nursery it is much lower than this) - with prompting it is >95%. We work on the basis that children don't learn by failure so we always look for ways to help ds be successful & when a task is particularly difficult (ie free play with peers) we are around to provide help (prompting).

We have told him that if he ignores people they won't want to play with him - this is true & he is aware that he will start a game then the children will stop playing because what's the point if you're going to be ignored half the time. I think failure to address anti-social or inappropriate behaviours in the name of 'autism acceptance' is abhorrent & disabling & cruel. My ds wants to play with his peers, he wants 'friends' (as far as a 4yo understands that concept) & it is our responsibility to do our very best to help him develop the skills he needs to be successful in that area.

All the autism specific interventions from education people/SALT etc do nothing to address more advanced social skills. As far as they are concerned if a child can play a turn taking game without hitting his peers then they have social skills - it's bollocks & won't get them far in an independent adult existence.

[maryellenwalton]

All I can say is that in 3 years of running a home programme, and being in regular contact with many, many ABAers, I have never encountered anything that even comes close to anything described in the op. I don't have experience of AP, but no practitioner I've ever encountered would ever demean or humiliate a child. It would be complete anathema to them.

DS1 has some minor stims which the consultant has never suggested changing. They are categorically not trying to deny his autism! He learns through play and is cuddled and told he is wonderful at least 100 times a day. The ABA is solely about teaching and motivating him to speak and to acquire skills. Addressing problem behaviour too, but only by means of reinforcing the positive and being consistent in not giving in to tantrums etc.

[maryellenwalton]

Rofl at 'dog training' btw. That's always a nice non-antagonistic phrase!

[ABAconcerns]

That sounds much better, gracious. To be fair there was a lot of play and nice functional stuff going on in these programmes which is why all this "weird" stuff didn't sit well with it IMO.

My SALT has done a fair bit of advanced social skill stuff that doesn't sound that dissimilar to what you are talking about but she is not an NHS one, we have done trips in the community where we practice a script and then carry it out and he gets rewards etc. The NHS one was well-meaning but there was no intervention, just diagnosis though she did give us some links to some great resources etc. We also did Hanen and More than Words and found both of these really good.

I know what you're saying about ignoring other kids, but this is true as you say. This is not the same as calling a stim weird in my opinion and I don't care if other people really do think it is weird, it isn't okay to call something neurologically based. Kids think people being blind or in a wheelchair is weird too but we wouldn't let them away with it. I hear a lot about this autism acceptance stuff but I don't see why it has to be "either/or", either you are totally letting your child sit on the floor rolling a pebble between their hands 24/7 or you are stopping any vague hint of difference and only letting them play with stuff that other people think is "appropriate". I suppose the problem is that a word like "inappropriate" or "antisocial" is a bit subjective. I barely noticed the supposed "weird behaviours" that they were coming down on and to be fair maybe they were once a lot worse..

I don't know.. does it have to be all or nothing? Can you learn as a person with autism without having to be totally sat on? Is it really impossible to have some "autistic behaviours" but also learn some control and be encouraged to be the best you can be and learn lots of things? I am looking for somewhere in between, I want him to be able to have some self-control and to be able to participate and learn the skills to get on with others and control the rages and bad behaviour. I can see he needs to actually do stuff to learn it and use it, he's not going to learn it without that help because that's his disability.. but does he really need round the clock total control by an adult to achieve this? Does anyone do ABA lite? Am I just being idiotic? I feel really confused.

[ABAconcerns]

Cross posted with you maryellen, who is your provider? Can you PM me if you don't want to share on the board?

[ABAconcerns]

LeninGrad, to me I think of that as being (with no disrespect to any of our kids) a bit like with toddlers, when you pick them up like a rolled up carpet when they are screaming and go out of somewhere to show them that screaming blue murder isn't the way to get what you want. I'm happy with sensible approaches to serious things and/or showing that bad behaviour has natural consequences, like Supernanny I guess. "You are 8, you do not need to sleep in my bed" sort of stuff. I don't let my 2 year old get away with whacking me because he doesn't have the words to ask for something or is outraged I have said no, I won't let any of my kids away with this and disability is not a get out clause either, mate.

I just don't know what the importance of getting someone to say that a minor hand tic means other people will think they are weird, it felt like bullying to me. Also I kind of feel a bit like, well, does he have to do all the work? What about these other kids, don't they need to learn that sometimes he hasn't responded because he hasn't a clue what they have just said or that it's pretty crappy to call someone names because they are a bit different to you? Because when I think of my other kids or see kids at playparks they don't seem to take turns or really listen to eachother or join in games that easily, they seem to have this language of their own where they just work stuff out. One thing that AP crowd did that I liked was that they gave warnings e.g. they said we are going to practice playing this game a different way and they showed different ways of handling this before they did it, that was good.. it wasn't all bad, I shouldn't make out that it was, it was just the bits I didn't like really stuck out like a sore thumb to me.

[someoneoutthere]

well, we do ABA, and to stop DS making silly noises, they use the term 'quiet voice', not that ds would understand the word 'weird' or will be bothered about looking weird as he does not care about not having a friend atm. If he is doing a programme, they time it, if he is quiet for 5 seconds, he gets a sticker and once he has earned 5 stickers, he gets to do an activity of his choice, be that having a silly time (where he is allowed to stim and then learning that making silly sounds has to be at the appropriate time) or a piece of sweet (he is given the option to choose). If ds does not stop making silly sounds, it takes him longer to finish off the activity. Although at first he did not make the connections between finishing the activity in a quiet voice and having a reward, soon he realised and this has reduced DS's verbal stims by 80%. I have never seen our ABA providers to use the method you describe to stop him stimming. They seem to reward the good behaviour and ignore the bad behaviour.

I am not defending ABA, I don't get on with my supervisor a lot of time because sometimes there are approaches they suggest that I don't feel comfortable doing. For example, once they suggested I stop the car whilst driving if ds is fighting with dd. I point blanked refused as it was not something I was comfortable doing despite seeing what they were trying to achieve. It has been two and half years we have been doing ABA, and there has been more than one ocassions when I did not agree with the supervisor or her approach. But for me, everything about ABA is not wonderful, but considering all the options avaiblable, I would rather have ABA than not.

[coff33pot]

Oh Gosh! Well I know for sure if someone told my child he was wierd they would be marched out the door before their feet touched the ground. It would just make his self esteem crush more to be honest and I wouldnt allow it.

That said they cant all train that way surely? There are good and bad in every organisation so I guess its a case of plugging away till you find the right one for your child. Are there any mothers here that have had ABA for stims and if so how did the ABA work for them, what EXACTLY did they do?

I fully understand there are some stims that are totally unaceptable in society but there are others that I would deem to be trivial and if this makes my DS comfortable to walk down the street so what.

If someone could actually state how they ABA deal with stims that would be a great help.