Feel like we have to hide ABA like a dirty little secret!

(55 Posts)
Migrainefun Mon 07-Oct-19 20:10:44

Basically just a rant.

My son is 2.5 and awaiting diagnosis of ASD. We have had an ABA consultant train us how to do ABA with him and she manages a programme for us and sees him monthly. It is going so well! I could cry, he couldn't do a shape sorter, and he's learned to do the whole thing in a week. He's beginning to imitate me. He even asked me for juice!
I want to share this with people but the reactions have been bizarre.
My friend who has a husband with ASD told me that they think what I am doing is cruel, if I'm going to be part of the ASD community then I should know that everyone disapproves of me trying to "fix" my son, that he wouldn't naturally have ever done the shape sorter so why am I forcing this on him etc. I suddenly feel very ashamed and low, I wanted the equip my son with the tools to do what he wanted to do in life but now I am feeling so guilty!
Also I mentioned to his paediatrician about the ABA and they didn't know what it was, thought I was being scammed by this consultant etc hmm
Rant over sad I just needed to share somewhere safe..

OP’s posts: |
danni0509 Mon 07-Oct-19 20:23:57

If it's working for you and your son, fuck anybody else's opinion.

I hope he keeps on progressing thanks

MyNewBearTotoro Mon 07-Oct-19 20:25:12

Sorry but I’m on the anti-ABA side. I started the training to be an ABA trainer but found it too much like dog training for children, it felt like it was about conditioning to do things based on reward and punishment and there are cases where therapists will cause huge amounts of stress and upset in children as part of the ‘therapy.’ It also has a negative reputation because sone of the skills taught are just rote learning (Eg: teaching to complete a specific shape sorter but not the skills to transfer that sorting skill to putting away laundry/ cutlery etc or other functional skills) which aren’t easily transferred or useful in real life and there some of ABA companies who make unrealistic promises to parents about progress to fleece them of money.

But that doesn’t necessarily mean every ABA therapist is like that or that every technique is negative.

Is your son happy during the therapy? Is it based on play and fun and encouragement and the things he’s interested in? Is he smiling and laughing during the therapy rather than getting upset? If he is then I wouldn’t be worried. If the techniques are working for your son and you have seen the therapist work and are happy with her relationship with your son, the skills she’s prioritising and the demands she’s putting on him then you don’t need to worry about the fact that some ABA therapists/ companies are a bit dubious.

bialystockandbloom Mon 07-Oct-19 20:33:02

We did ABA (verbal behaviour) with our ds some years ago when he was 3/4/5. Best thing we could have done for him. His happiness at being able to communicate, play and interact, having been taught the skills, was 100% more than previously. No rote learning whatsoever, it was literally the opposite (incidentally any other intervention that was tried eg by nursery/school, which was minimal in any case, was way more rote-learning in practice). It was the only effective way we found of actually teaching even fundamental social communication skills. Don't recognise the pp description. Glad it's working for you!

openupmyeagereyes Tue 08-Oct-19 06:29:20

If you have made an informed decision to do ABA, are seeing the results that you want and - most importantly - are comfortable with the techniques then have confidence in your decision and discuss it on a need-to-know basis only.

I’m really not sure where I stand with ABA. I can see that the (positive reinforcement) techniques can be useful for teaching new skills but I really don’t like the idea of subjecting children to 30+ hours a week of it. However, I am also aware that I am in the fortunate position to have a child who is verbal and largely cooperative and able (we do have issues; sleeping, eating etc.). I can imagine that if I had a child more severely affected and with very challenging behaviour I might view things rather differently. I’ve already done most of the things that I was very scornful of before I had children and was clueless but thought I knew it all.

MyNewBearTotoro makes a good point about ensuring that learned skills are generalised. You can speak to your consultant about that.

I have to say that I am stunned to hear of a paediatrician who doesn’t know what ABA is though.

sickofsocalledexperts Tue 08-Oct-19 19:42:26

Show this complete stranger opining on your child this (see below) and many more on this website. ABA has been the best thing for my boy, now 16. There is a fashionable anti view going around which is usually by folk who wouldn't know ABA from a hole in the ground. Do what's best for your child, the rest is noise. My boy would never have talked without ABA, amongst so many other life-enhancing skills.

medium.com/*@craigrigden78*/im-autistic-this-is-why-i-chose-applied-behavioural-analysis-for-my-2-children-with-asd-fb3698afbd98

www.abaa4all.com

sickofsocalledexperts Tue 08-Oct-19 19:47:09

ABA schools in the UK are all rated either Outstanding or Good by Ofsted. The NHS is increasingly using ABA, as is the National Autistic Society (albeit they call it PBS, to avoid the angry and opinionated online crowd). Please see map. Your pal should tell her husband to keep this beak out, imho

www.abaa4all.com/aba-map

sickofsocalledexperts Tue 08-Oct-19 19:49:04

Sorry, correction: his not this - as regards the beak

BenjiB Tue 08-Oct-19 20:39:28

He’s an idiot to be honest. My son is now an adult but did intensive ABA for 3 years, 40 hours a week when he was 3. It was a game changer for him. Some people literally have no idea what ABA is and have never had actual experience of it. He learned the simple things that come naturally to typical children. He is still at the severe end if the spectrum and is non verbal but he is can dress himself, feed himself, was toilet trained at 3 years old. He can choose what he wants to eat and which clothes he wants to wear. He can communicate at some level to get his wants and needs known. He can write his name and read lots of words which helps immensely and keeps him safe. He can sit and concentrate on a task which helps him learn. He’s now at a fantastic college and is doing amazingly. I never thought I’d see the day.

Anyone that thinks that it’s cruel having a therapist come and spend 1:1 time with a child, teaching them new skills and having loads of fun to boot is, in my opinion, ridiculous.

I have no idea where my son or us as a family would be today without the therapy he had. We were part of a research project and I’ll be eternally grateful to our whole team forever. They changed his life and ours.

Quizeerascal Tue 08-Oct-19 20:44:48

I'm an ABA practitioner. Your ds sounds like he's doing amazingly well. If he was one of my little protegees, I would be happy-crying on the bus to my next job with pride smile

ABA breaks down skills that will improve the quality of an individual's life and uses the things they enjoy to teach them these skills. Thereby enabling them to access more of the things they enjoy and further improve their quality of life. Eg if you can learn to communicate you ask for cake/a hug/your favourite music video etc. If you can be taught to follow a recipe you can make your own cake. If you can learn to wait you can go to Thorpe park.

Yes ABA has a bad reputation, perhaps because its been misused in the past or perhaps because LEAs think if we talk about it too loudly they'll actually have to provide it.

No, we're not trying to fix children, we're just trying to improve their lives and when you watch it happen as OP describes its wonderful

AngelicaM Tue 08-Oct-19 21:02:49

We are over four years in to our ABA programme for our DS, having started at a similar age to your DS. Our ABA team are without question the kindest, smartest, most empathetic people I could've dreamt of finding to work with my son. Their belief and passion in what he might achieve, whilst still respecting the severity to which his autism effects him ( and it is severe) is something I have not found anywhere outside the ABA world. In short, ABA to me is simply the belief that my son can, and has a right to, learn and progress and that is a breath of fresh air in comparison to the palliative, unambitious approach of everyone else we have dealt with. Very few of the professionals I have crossed paths with have known about ABA, please don't let this put you off, and certainly don't be off by an autistic persons opinions, who by nature of the fact they are married and able to share these thoughts, are far removed from the autism my son lives, my son will not ever live an independent life, but ABA means he might live a safer, happier, easier life x

amunt Tue 08-Oct-19 21:15:55

Like many of the above we have seen amazing gains from ABA. The alternative is to make no progress with the no hoper 'professionals' that schools, LAs and to an extent the NAS employ.

Sneering comments about cruelty have no basis in reality and only speak to the ignorance of the person in question. As for the usual comment that it's like dog training- it could be cat training for all I care , as long as my son enjoys it and improves his quality of life.

Quizeerascal Tue 08-Oct-19 21:18:07

You put it better than I could Angelica, so glad to hear how well your ds is doing with ABA smile

Ziegel6 Tue 08-Oct-19 21:23:28

I have four boys, all diagnosed with ASD before the ages of three. We did a total of 16 years of ABA with them all. They were non verbal at diagnosis, had no method of communication but tantrums etc etc. Now my eldest twins, 20, are studing music and art at college, with some support but able to lead active lives which they love. They are all verbal and can access the lives they choose because of ABA. Do not listen to the self righteous who do not understand what a life changer ABA is. Good luck and so glad to hear your little boy is already asking for juice, that is the whole point, to give them a voice and some independence. There is lots of support on Facebook, do find some groups on there. I blog on A Parent's Guide to Coping with Autism if you want to check my boys out and see what ABA has done for them.

EggysMom Tue 08-Oct-19 21:38:39

I'd hardly call it a dirty secret with seven threads on the first page of the SN Children board referencing ABA.

AspergersMum Tue 08-Oct-19 21:53:36

But "ABA therapist" isn't a protected title; absolutely anyone can call what they do in the UK ABA therapy. I believe it is slightly different in the US where companies have to prove to insurers that they offer a service. We had a company on our local Facebook looking for 16-18 year olds to "do ABA" and I'm very curious what the parents were being charged for the service. Probably a huge amount more than the £8 the teens were being offered.

HumphreyCobblers Tue 08-Oct-19 22:12:07

My ds aged 6 has only aquired language thanks to ABA and the amazing VB Map. I have never had one single bit of helpful input from a speech therapist regarding him, and he was signed off at 3 despite having literally no language at all.

I do not know where we would be now if it were not for ABA and the fantastic therapists who have worked with him.

I cannot get over the arrogance of someone who can speak saying that my son should not have been allowed to learn.

AngelicaM Tue 08-Oct-19 22:54:25

Thanks Quiz, he's very lucky to have such a great team, our ABA tutors are angels as far as I am concerned, I'm sure your families feel the same ☺️

RoyalOak Tue 08-Oct-19 23:22:02

I really don’t understand why we shouldn’t teach our autistic kids skills that can help them to lead happier and more fulfilling lifestyles? Be it academics, self help or social skills. People never tell you not to teach neurotypical child who is stuck to his iPad or computer games to read and write. If you ask that child ‘learning’ is boring and may even be ‘cruel’. Lol why not teach autistic kids? Is it better than stimming in the corner and self harming because they don’t understand the world around them?

RoyalOak Tue 08-Oct-19 23:29:06

ABA teaches all of those skills, from self help to academics around child’s motivation and ability level. It’s very individualised, these high functioning autistic adults think they know it all. No they don’t! They never dealt with a child who self harms and screams all day. My kid did that. I tried special school, it was awful no progress whatsoever if not behaviours worsened badly. I then tried a mainstream with eclectic outreach support it was a disaster, he got excluded few times.
Then we opted for ABA at home, started learning, then ABA at a mainstream school. Amazing progress. My severely autistic kid who aged 5 used to smear poo all over the house and was non verbal until aged 8, can now speak and read and write and make his own sandwiches. Learning to bake and learnt a lot of skills since then. Isn’t that what we want our kids to be happy and independent?

somanyresusablebags Wed 09-Oct-19 07:07:36

ABA should be mostly fun. You will know if your son is unhappy. In my experience with ABA, most people are happier when they can communicate effectively.

It is nonsense that ABA has a normalising agenda. As a professional it is a great privilege to work with children with ASD. I don't want to change the children's essential selves. I think they can be their most essential selves when they can share their wants and thoughts rather than having people guess on their behalf.

In the UK ABA practitioners have listened to autistic adults and adapted our practice. Now when anti-ABA people see our practice they say "that is not ABA." I am not sure they want to understand, being anti-ABA is an easy position to have. Like everything, the truth is nuanced.

Branleuse Wed 09-Oct-19 13:40:28

There are different levels of ABA. Some of the strategies used in the US have been shown time and time again to actually cause a form of PTSD in many people, and yet I know of some places in the UK that have used techniques that seem quite gentle in comparison, and just seem like intensive teaching. I think it probably depends on a number of factors including what exactly you are trying to acheive and why. How it is done, What are the consequences for non compliance, and also the personality of the child and whether they actually like it.
I mean you can get results from anything. You could probably toilet train a child by rubbing its nose in it, but that doesnt make it OK for example.

LightTripper Wed 09-Oct-19 14:31:28

I'm in a very similar place to open, somany and *Branleuse" in that I would say "it depends". I think a lot of damaging ABA is done, but I don't think ABA has to be damaging.

There are plenty of adults who went through ABA who see their ABA as abuse, so I think it's not right to just write it all off as "high functioning autistics don't know what they're talking about", which I often see. And some people do run ABA with a normalising agenda (supressing stims, extinguishing behaviour rather than understanding what stresses might be underlying it and minimising those, etc.) I think perspectives of adults who feel they've been damaged by it are incredibly valuable to parents, as it allows you to really think about whatever interventions you are doing (way beyond ABA - I remember also being very distressed by DD's physio in the past and not at all sure if we were doing the right thing) and whether they might be damaging (even if they are also helpful in other ways).

On the other hand I think a knee-jerk rejection of behavioural approaches is also overdone. All parents and teachers use behaviouralism to teach their kids (a tick in a homework book, a star chart for good behaviour, saying "well done", smiling, detentions, is all behaviouralism). Most of us even do behaviouralism on ourselves (I have a Fitbit, and treat myself to a coffee on the days I walk to work, promise myself a tea and a biscuit when I've finished an unpleasant task, and a drink in the evening when I've had a constructive day at work).

We ended up getting some ABA support and using some ABA approaches (and like open we're lucky that DD is verbal and pretty happy so it makes a lot of these questions easier or less pressing: I'm aware that's a privileged position).

On that basis I would propose some "obviously fine" and "obviously not fine" buckets:
- A lot of it was a bit like the physio my daughter had when she was late to walk: taking things that she wanted to do but couldn't work out (like talk to another child) and breaking them down into tiny steps that she could practice and build on. I really struggle to see a problem with that. A lot of our kids (probably all??) do want to communicate, they just don't know how - so breaking down that communication into smaller steps that might be more manageable can't be a bad thing.
- I have never heard of a good argument to use behaviouralism to reduce stims or other coping behaviour or to increase eye contact (or anything else designed to increase the comfort of the people around the autistic person, rather than the person themselves). Even things like showing distress/shouting have an underlying cause: if you just extinguish the behaviour the danger is the cause is still there and the child is struggling and actually becoming less able to communicate because they are being incentivised not to communicate in the ways they know how. But I think many ABA practitioners are probably aware of this and try to understand the sensory triggers and redirect self-harming stims, rather than extinguishing them.

I have also read suggestions that ABA is too focused on verbal communication, and therefore misses opportunities to get kids communicating in other ways (if you look up Nurturing Neurodiversity, her non-verbal son is doing amazingly with an AAC app on her iPad: as far as I'm aware nobody in the UK is funding that or helping parents learn how to use it, or helping parents access funding to provide it if they can't afford it, and personally I'd put budget there before ABA).

I do also think the risks of "over-compliance" (and therefore the risk that children wouldn't e.g. report abuse) are worth bearing in mind. Of course this is also true of children being expected to be compliant in any setting (schools, etc.) and we know it isn't only autistic children who are abused and say nothing: but certainly something to be aware of if they are being rewarded for doing what an adult tells them even when it's unpleasant/distressing to them.

Finally, as somany says, I think it's important that the activities themselves are motivating and fun. I'd be very worried if my child was doing something in order to access food or a favourite toy for example. But then, if a few sweets was what it took to induce my child to learn to look after their bathroom needs independently (increasing their independence and reducing their vulnerability long term), would I do it? Probably. So there is plenty of "grey area" between the "obviously fine" and "obviously problematic".

The problem is no parent knows what their child would or wouldn't have done if they had/hadn't had ABA (would they have been verbal or not? Would they have been more or less anxious?) And the evidence base is largely old and a lot of it was on "appearances" (so it was in those days trying to normalise). I'd be very interested in research that linked ABA to later mental health for example (I can see arguments why it could go either way) - but you'd have to very carefully define what ABA actually is and what targets were being pursued and how, as currently ABA seems to be almost any behavioural intervention (and actually lots of the things our consultant suggested - like doing a diary with DD to encourage her to process things that had gone well and badly during the day - were not really behavioural at all).

Aunaturalmama Wed 09-Oct-19 15:50:30

ABA may have come a long way, but your friends husbands generation.... ABA was horrific. That’s where the bad comes from. Even myself as a 30 year old thought this. I’m hoping to change my mind but haven’t yet as I haven’t seen the new programe in person

Migrainefun Wed 09-Oct-19 17:14:37

My friends husband was only diagnosed about 6 weeks ago so I'm sure he doesn't remember any ABA!

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