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

sorry I totally disagree graciousenid my ds IS being taught social skills and is in a SS has SALT intertwined through the whole of his education and other therapies inc AIT and its a TEACCH SS and they spend 80% of their time working on social issues as its a social and communication SS,
They teach dcs appropriate and non appropriate behaviours and everyday life skills like shopping using an atm machine (just eg) but nothing is ever negative, if it was negative in any way I would not send my DC there he spent 10 years of his life already being stigmatised and bullied told how stupid (hes has an above av IQ) how disgusting behaviours are ect ect so much so he began to self harm , he was 8 to 10 at the time , this surely has to be a system used at its very worse, at least I hope so, I couldnt agree to any programme that tells my DC hesweird or that a behaviours strange , inappropriate (ie scratching his balls or picking his nose ) of course thats inappropriate for any DC but as I was always taught its not WHAT you say but how you say it.
My DC stims but does everyone (and im sure you do) realise that if a DC is content and calm stimming also wains my DC is calm and happy more than ever atm and rarely stims except only when very excited ,and why should we want them to stop doing something that helps their sensory overload anyway? I do if say at the cinema and DS is getting excited and stimming put my hand on his lap he usually stops for a min but I only do this because I dont want the lady behind complaining she cant see the movie if were at home I let him do whatever makes him comfortable unless jumping up and down in front of the TV.
Why would any programme try and wash out of a DS who he really is.
At the end of the day any programme or therapy that works for you is fine if your happy and your dc is happy with it then thats brilliant.

Yes, I think it may be that this provider is not the right fit for us. I don't really want to be "told" what to do in the sense that if I don't agree I will be seen as causing trouble, I want to be able to say no if I am paying for services if I don't agree and I want to keep the SALT because she has taught me so much about autism and we have seen such changes in ds. I also would like to investigate other approaches and sod the evidence, I really feel diet makes a big difference even if there's no big study to prove that it works.

But yes, you are right, someoneoutthere, the options are poor. I can muddle through on working out how to address the behaviours I don't like or get professional help, so even if it's not perfect, I do have to keep investigating. I just need to find someone who isn't going to do something that doesn't fit in with our family's values.

thats the issue really isnt it finding like minded "professionals" who work within our own ideology.
So maybe if the actual beliefs not quite right for you anyway its best to look further and try some other approaches / therapies
look into:
AIT
diet and suppliaments
massage therapy
music therapy
pecs
aversion therapy
social stories
DIR/floortime
TEACCH
BIO medical
CBT
RDI
retained reflexes
OT
medication

and their are more you can try unfortunatly mostly you will have to pay for many of these privately but they can be hit and miss as our dcs are after all very individual.
We need to find in this tangled web what works for our dc and that wont happen over night but its a special journey we are all on the same path vive la différence

Well a bit reluctant to venture into this as we use AP and can honestly say I can't relate to what you say at all. As far as I know they do not have any consultants in the UK. The consultants come in quarterly from USA, so I am not sure who you saw. If you did not like what you saw i would raise it with the UK site director. Were these AP staff or independents?
I find the senior staff very approachable and if you have questions you should raise them. If you have concerns about staff they would want to know about them.
I would say that AP do put alot of emphasis on reducing stim, pretty essential for us as DS would choose to do nothing else all day, so thats familiar, but necessary at this current stage.
But all his staff are lovely and positive and adore him and have fun with him. All the 'feedback' on stim etc would be positive, or at the most it would be an uh-uh, or 'you didn't listen', or 'too noisy, use your quiet voice', or 'nice still hands' eg telling DS what to do instead and then lots of praise when he doesn't do 'behaviours' eg we have a major issue with stripping off his clothes right now so praise him when he keeps them on.
I wouldn't support the comments you say were said, but I can see for an older child having an understanding of whats 'cool and not cool' as our AP consultant would put it is not negative, but empowering for a child who wants to fit in but does not understand why they don't. In that sort of situation I actually do think its ok to tell an older HF child about behaviour that would lead them to be isolated from their peers. But not in a way that would make them feel bad about themselves.
Although to be fair I recall Temple Grandin saying how relieved she was when her boss came in and threw a can of deoderant at her and said you stink, shower every day and use this - then she says she fitted in much better and was happy he had told her!
As far as the restraint situation goes, many parents run programmes on a shoestring and the programme would not be what AP would want as an ideal. I am not sure thats a criticism of AP really if the parents couldn't afford the training. other providers turned us down as we could not afford 40 hours a week, so without AP we would have been lost.
I think you would be better taking this up with the senior staff or looking elsewhere.
I agree about the name change thing it makes me nervous. When we were going to tribunal a few negative posts like yours appeared and I was totally paranoid the SEN officer had figured out who I was and was posting anti-AP stories just to get some dirt. I am not saying thats what you are doing, but I don't like anonymous posts. Because if someone is trying to get a programme funded with AP, it might make them edgy.

I promise I am not an LEA person or otherwise trying to dish dirt on AP, I would have to be fairly dedicated to be up at 4 30 am doing so anyway! I understand your nervousness but I worry that this leads to no honest reviews of consultants or senior staff or programme supervisors or what have you and everyone surely has their poditives and negatives. I'm not happy about the restraint or child proection side of things, it is too big a deal to just leave to chance and as they are the professionals they should not be supporting a programme to continue without all staff having training. They charge a fair whack and this seems just something they should do, no other staff in the UK working with kids would get away with it. I don't think anyone should put parents in a position where they have to do 40 hrs of anything a week... It just highlights the sorry state of affairs in our country that you have to be grateful that someone will be flexible to meet yoir budget because everything on the public side is shit. I suppose I see what you are saying about TG but I just can see that calling a child's behaviour weird or not cool or whatever is not for me unless it is seriously inappropriate like pinching someone or stripping or self touching or not washing, not happy with it for things that are JUST autistic unless it really is interfering in a big way with everything else, but that's just my view and I know others feel differently. I feel my son is pretty fragile from an esteem point of view, he doesn't really need to be told he's not cool and he is far too young to have his self image battered in this way. I can see it would be empowering to be in a situation where a young person could really talk to someone abput social norms and get feedback from an adult as a critical friend maybe but that wasn't what this looked like, it looked like he was with a nasty person who was telling him what he was doing was weird and had taught a response to this affect which just made me really uncomfortable because of what it was. I had a mate at uni with Tourette's, we bloody loved that guy, the world is harsh but it teaches its own lessons too and sometimes the best lesson is that there are people who can see past your imperfections. Stopping totally antisocial behaviour fine, making out it is wrong to be disabled because there are shits out there who think it is not fine. Or weird or not cool or whatever. Who decides drama is not cool but football is? I think drama is cool and football is dull as dishwater and shock horror dh agrees even though he is a man! I need help with car journeys and bedtime and hygiene and food, also talking to peers but I just want to know what to do, strategies not personality therapy to make him pretend to be normal to avoid bullies. My experience of bullies is they can unpick all your defences easily if you are pretending and the strongest defence is to be secure in yourself and rational about how they are not qualified to judge you but that's a story for another thread lol

I am a senior behaviour analyst. Programs will vary between consultants, but here are my thoughts on your first two concerns:

1. There is no evidence that self-stimulatory behaviour can (or should) be forbidden. Sometimes these behaviours keep a child from learning or engaging in a task that will be enjoyable or beneficial for them - so sometimes behaviour analysts encourage a child with self-stimulatory behaviours to stop them during some activities. We all have self-stimulatory behaviours and trying to stop them totally is silly.

1. Taking the toy off the child for saying "Buh, buh, buh" is completely wrong. It is a punishment procedure, and we do not use those in ABA unless nothing else works. The therapist should have re-directed the child to make the appropriate noise to access attention.

1. Calling a mother to come do a restraint is just going to teach the child that those behaviours are a good way to see their mother. Restraint should also only be used when everything else has tried and failed.

I could go on, but I won't. It sounds to me like untrained therapists are making decisions on these programs, and they are not receiving enough proper supervision or consultation.

I could go on, but that sounds like a bad program. I would look for a consultant that is a Board Certified Behaviour Analyst (BCBA or BCBA-D) with several years experience. Your consultant works for you, and should target the skills and behaviours that are right for you and your family. They can provide guidance and suggestions, but ultimately they should design programs that you can manage and work for your family. Autism Partnership, by reputation, isn't the most flexible program. Don't give up on ABA because you don't like their program - it sounds like a bad fit.

I also wanted to add that ABA-lite is great, but maybe the wrong way to think about it.

There is evidence that 40 hours a week of Intensive Teaching using the principles of ABA can help children with autism make substantial cognitive, language, social, and behavioural gains. The early this therapy starts, the better the prognosis.

However, Applied Behaviour Analysis is really just a way of understanding learning and behaviour. It does not mean 40 hours of intensive teaching, it means understanding why a person engages in some behaviours and teaching them better ways to communicate and get their needs met. It means understanding how to motivate someone to learn, and how to teach them effectively.

A good behaviour analyst will help your family solve the problems you need solving.

However, Applied Behaviour Analysis is really just a way of understanding learning and behaviour. It does not mean 40 hours of intensive teaching, it means understanding why a person engages in some behaviours and teaching them better ways to communicate and get their needs met. It means understanding how to motivate someone to learn, and how to teach them effectively.

A good behaviour analyst will help your family solve the problems you need solving.

I've steered away from this thread so far as haven't had time to fully put forward my views.

But parasaurolophus has said above pretty much all you need to hear, I think, in response to what sounds like a dreadful and unrepresentative experience of ABA.

I hope not, we have just started ABA with AP.

I have stayed out of this because I am cautious about commenting on any specific provider but I have posted here in the past that I had some negative experiences of so-called "response cost" systems with AP (specifically punishments like children being made to tip out buckets of sticklebricks again and again until they would comply with things like saying the alphabet, being forced with hand-over-hand prompting to match and pair a drawerful of socks for not raising their hand in a mock school roleplay and being told that certain behaviours were "weird" and no one would want to be their friends).

I learned a lot from AP, which is why I am uncomfortable with this. When I started as an ABA person with AP (having had previously had precision teaching experience), I really enjoyed and saw the efficacy of many of their programmes. There were many functional, play-based programmes that made a very real difference to the kids I was working with and we had lots of fun and the kids had lots of cuddles and trips into town and we had great games together and with peers.

I worked under the supervision of AP for four years, but at the beginning of the fourth year, I told the parent of the remaining child I was working with that I was no longer comfortable with some of what was happening and I wouldn't commit to following through on some programmes, so I wouldn't do them. I had just qualified and I was pretty sure that some of what was happening would not be looked kindly on by social services. We were told, at one point, not to do certain programmes involving punishments in front of school staff as they "might get the wrong idea". Hell yeah, they would.

I have thought long and hard about posting this because a) potentially it makes me slightly more identifiable and b) because I know that a lot of the programmes were very functional, child-centred, loving programmes and they really did help change those' kids lives. On the other hand, as a parent now myself, ethically and morally I wouldn't want to see punishment used for some of the things I saw it used for, and as Parasaurolophus has pointed out, ABA shouldn't be like that.

I have a friend who still works with AP and she says it has softened out a lot in the years since I worked there, although she says that the kids are still told that their stims are "weird" and will make people not like them.

If you are starting a programme with AP or working with programme supervisors from there at the moment, I would have a long hard talk with them about the use of punishment and say that you want it to be made explicit if any punishment is being used and for what reasons, and that there is agreement from the outset about how it will be faded. Make it clear that you don't want it operating without your consent or packaged as something else. I would also insist that a functional analysis was done by a BCBA before any punishment programme was implemented, particularly if children are going to be punished for compliance with meaningless, non-functional tasks. On one programme I was involved with, a very severely affected little boy had "the sticklebrick treatment" because he was self-injuring in frustration and it was a way of redirecting his frustration to his hands. I had no ethical issue with this, but I did when it was because an older and more verbal child couldn't or wouldn't say the Alphabet on cue for the millionth time in a day.

I might not leave this post up here long as I am edgy about it and as Agnes says it's not good to have things that can be used against others when taken out of context, but I felt I should post it because I would want that advice if it were my child.

OP,

Yes some ABA programmes are like that. No, that is not how ABA should be done.

Is is absolutely essential that you keep records of the behaviour and work out the function. You then make a decision (based on data) whether it is holding the child back or detrimental to their learning or well being.

If you decided to try to work on it (and this should never be anyone's sole decision), then depending on the function you will aim to either redirect, replace in favour of something that fulfils the same function but is more socially acceptable (not to change the child but to enable interaction with peers/others to continue in RL) or, if the function is to a avoid learning then you can analyse your own behaviour to establish why the child is not interested enough to stop stimming for a bit. There is loads more but you get the gist.

Wrt AP. I don't know enough about them. Unfortunately I am learning to be cautious of all UK providers (yes I know they are US but many of their staff are UK). We are so so far behind in terms of quality if provision and the consultants that were up to speed are so in demand I feel they've lost their touch.

Then we have some American BCABs who have come into the UK who know that they are better qualified than the existing consultants and feel justified at charging more. I have recently heard of fees in the region of £1k per 6 hour day.

I don't know what a parent is to do tbh. I blame the Goverment for forcing parents underground and making them both desperate and time-pressured (due to late dx). There is of course a cost-benefit threshold which whilst I believe is high, is still there.

I chose someone to run our programme who was not an ABA Consultant, but shared my ethics. I would suggest in tutors you try to gets someone academic, I.e having done an MSc in ABA or studied Child Development at degree or beyond. These tutors tend to be more analytical or critical about what they are doing and where they have studied ABA have done so in context.

Above all though, take control of any programme you run. YOU should be team leader and sign off any strategies. A good Consultant will work this way. And learn all you can. Knowledge is your best weapon against dodgy practice.

We also do ABA and have been doing it for the last few months with AP. My son also has problems with verbal stim and is constantly singing/humming and the approach is exactly the same as someoneoutthere. The stim sounds harmless esp as he is only 3yrs but it has been targeted because it affects his ability to attend and engage with us and he is more likely to go into his own world. His stim has now significanty reduced and his attention has greaty improved.

I also agree with someoneoutthere that ABA is not always smooth sailing. Sometimes you will not agree with the programme but luckily I have a great supervision who has always recognised any concerns I have had.

Graciousenid- please could you tell me how other programmes differ to the play based ABA. Particularly to develop social skills and communication?

bee169 I don't know - all the programmes I've observed (including ours!) have been play based, I was just noting that the only AP programme I have any personal experience of (indirectly) was also play based & from all accounts a very happy & functional one :) TBH of the programmes I know locally only it is only us & the YAP programme that are working on social skills to the extent we are (we're 2 years in now & coming to the end of the formal programme thank gawd), I'm not sure what the approach of other providers is.

Lenin - the most difficult thing we're found is finding willing victims playmates for ds to practice on ... it is easier now his skills are better but was painful in the beginning. I consider us to be doing ABA-lite, we haven't had the resources to do any more than that. Our consultant has been great at working with our limitations but it often feels like a compromise & that is frustrating.

Vinniesbisqwits I'm very glad your ds gets such good support from his school & SALT; that certainly isn't the situation with us or any of the other families I know locally (including one with lovely ds at the 'outstanding' ASD specific SS in our town). Would save us an awful lot of money if that were the situation here.

I have disagreed with our consultant, supervisor & tutors on a number of issues - from trivial (we're vegetarian & fairly lentil-y - he's not going to be introduced to turkey twizzlers & war games in an attempt to fit in), to minor (we don't have a daily or weekly schedule & I have no desire to embrace one) and major (we home educate & ds will not be going to school; I know our consultant does not agree with this decision). That's okay though - I have trust in their experience but ultimately we are his parents, we make the final programming decisions & I would not hesitate to say no to a programme that made me uncomfortable.

I'd also mention that the 'fitting in' part of programmes isn't entirely driven by the provider - some families are absolutely desperate for their dc to be like everyone else. Some to the extent that they seem embarrassed by their child :(

oh I totally agree graciousenid it really is a case whatever therapy were talking about, a case of how good and well rained the provider is ,this includes SS and the help they provide, I only have posts on MN to go by and parents at our SSs experiences many many parents with dcs on MN are very happy with their SS from my experience and the teacch method and the other therapies they get as this is the correct environment for their dcs , unfortunately not ideal or possible for all as places are extremely limited so i know im a very lucky mum to get my ds in there it took 10 years mind of being treated like dirt by the LEA/schools and HCPs so getting him there was not an easy task.
I think a hell of a lot HAS got to do with each individual LEA unfortunately and expenditure, shouldnt make a difference but it really does come down to post code lottery it seems

trained even

how awful I was once embarrassed by certain behaviours before knowing what why ect but once you have a dx and read more and more and understand and more importantly come to terms with it why on earth would anyone be embarrassed at all ? thats so sad , sad for their dcs we need society to be more accepting , how can we ask that of society if we cant accept it ourselves.
we all strive to make our dcs lives as happy , comfortable as possible but I personally try to make my dc know that whatever he does whatever hes like, whoever he is is perfectly OK, until a few months back he had been programmed by society he was weird and unacceptable , thats why he was self harming and hated himself.

Vinni, there is more to it than that. My ds's programme costs less than the LA provision which, given he is in MS tends to be very generic and largely inappropriate.

Post code lottery is partially financial, but also political and common sense appears to be rationed too.

oh dont i know it yes much more to it than that there is no rationale unfortunately as is why it took me 10 years to get everything i needed for my DS so the fight is always continual mine has lessened for the moment but I know at any given moment they may well decide to close the school(we have been warned of this) or change the acceptance category and then there is next years staement review a never ending bombardment oh and whatever they decide about DLA yet to come so I do know a lot more to it than that, its not like ive been offered every treatment or therapy and I have had to pay for a lot of these myself in past so please dont think i was being flippant or dismisive ive had a huge fight for years to get where i am ds is nearly 12 so I do know how everyone feels , and ive not always lived here either.

forgot to add ds has only been at this SS 8 months after years of failed MS placements.

Is this a company called something like Network interventions? I have heard bad reports about this org on another site. No aba professional worth a damn would EVER call a child 'wierd'

I wouldn't go with those providers.

We've used ABA in the past, but don't really anymore as ds1 got to the stage where he reacted very badly to directives and traditionally ABA uses a lot of directives. Having said that I would be very happy to use ABA in a natural environment teaching setting (and maybe I do in many ways - I constantly think about reinforcement anyway) so my problem with ABA for ds1 is more to do with directives than ABA itself.

Ds1 is 12, severely autistic (non-verbal) but has come in enormously in the last 12 months or so. None of this has used what would traditionally be recognised as ABA.

The big thing that ABA did give to ds1 was the ability to imitate - which he learned aged 8. Without that we wouldn't have seen any of the gains we've seen in the last year.

£1k per 6 hour day is robbery! No-one is worth that much!

No provider I mean.