Did you know ABA is widely considered abuse?

[PennyRa]

I may be trying to kite a derailment a little bit but I also feel like it deserves its own thread?

I had ABA as a child many years ago. I think it saved my life. My stims and other behaviours were violent - I suffered concussions and even broken bones.
If anything, I’d argue that it would have been abusive to withhold a treatment that could have improved/saved my life.

It's not abusive , non harmful behaviours like stimming/ etc are never discouraged. Sexually inappropriate behaviour , physical violence , verbal etc because it effects the public and the person as they have their liberty restricted. A reduction in harmful behaviours is beneficial to both society and the person. We only use natural consequences we never punish , we use proactive and reactive strategies.

Yes, I talk about what my dd has achieved via ABA. Because it is helped her on her way to everything she is today.

I can say that she is much happier now that she is able to communicate effectively; that she is much happier with a wider range of interests; that she positively skips into school each day (yep, a 19 year old skipping down the road, often singing with me too - I guess ABA hasn’t done a good job of making her hide those pesky behaviours, has it? Or getting her to mask her feelings. Maybe because that wasn’t ever the aim), and can talk positively about her experiences throughout her ABA placements, but still brings up the times she felt uncomfortable at pre-school (mainstream) and the placement (SN school, not ABA) before we won an ABA placement for her.

in fact, the only abusive practices I have come across were at the SN school prior to her ABA placement, where the head gleefully told me how they would make a child sit at a work station until they had completed the task set out - holding the child in place if necessary, and where the school made my dd wear ear defenders, which caused her huge distress, because she got upset at another child crying all the time. It was a crap school, with horrible practices, which I withdrew dd from as soon as I realised what was going on. Funnily enough, the staff there used to tell me how awful ABA was 🤔. However, I don’t think all non- ABA schools are abusive, or that they use the same tactics in the same way as that school. Maybe some people could also try to separate out the abusive practices and abusers from whatever setting they happen to operate in.

there hasn’t been a single part of dd’s ABA curriculum that hasn’t been taken in her best interests, with her at the centre of how it has been approached. I can’t say she has never been upset or frustrated, or any other emotion, just as any other parent cannot say that their child (ASD or NT) has never been upset or angry, or frustrated, etc. She is human, and subject to the same range of emotions as everyone else, and has had days where she is bored, some where she is pissed off, some where she is ridiculously happy and silly, and so on. but I can say that she has never been repeatedly subjected to behaviours and situations that will cause her distress in an ABA setting - the closest she came to that was in a (highly respected, as it happens) non-ABA SN school.

The ABA that I’ve seen has not involved any distress or punishment, the children are not forced to take part. Sometimes withholding the reward can be frustrating for them. But it’s all positive rewards. Do you know how frustrating and distressing not being able to connect to those around you? Or not being able to express your basic needs?
However, I do think it needs to be done along side other approaches, such as intensive interaction otherwise the emphasis can be in ‘changing’ the autistic person rather than adapting the world.

Honestly I think it’s extremely problematic for this very reason that asbergers has been clumped together with much more severe forms of autism that require very different health needs.

ABA might not be abusive for more severe autism spectrum people who for example might say require diapers as an adult and are completely non verbal and can’t even function in society but might be abusive for someone who generally gets along in society and largely is just very socially awkward and may even be functional enough to get married and care for their own children later on. They have vastly different needs. Why do we insist on clumping them together and adding roman numerals? It makes for unclear, difficult and confusing discussions about their needs.

I find it unhelpful in my opinion. Who cares if it’s a spectrum. It can still be a spectrum and the different levels of need have clear and precise names that clearly define the levels of need.

Well, this bit goes some way to talk about that. It is s quote from the article:

The spectrum is so broad it doesn’t make much sense. Are we really going to put people with severe autism who cannot dress themselves in the same category as people with mild autism who work in Silicon Valley? It has also made this problem of not learning life skills worse – because even just slightly geeky kids are getting labelled as “on the spectrum”. Where this labelling can be useful is with relationships – it can help with misunderstandings.

Also what @BirdsAndBoats says: it has to be useful for the recipient, and Asperger should have stayed a separate diagnosis.

I have 2 out of 3 on the spectrum. DS who is high functioning is going to uni next year. His needs are vastly different from DD.

@BirdsAndBoats - well your answer typifies why I don't think it should be called a spectrum because so many people, including doctors, get it f'ing wrong.

It's not a spectrum with people on it. It's the spectrum of behaviours within one person.

Obviously not including physical and learning disabilities, but otherwise, there are of people who are on only "better" because they're good at covering up.

No one, seriously, no one would expect me to suffer from selective Miriam. But after a day at work, I need several hours of literally no input/ output at all. If I had to talk to someone, I'd end up in tears.

My son is somewhere in between. He needs hours of being mute, and then can happily engage for an hour or two before seizing up again.

The spectrum are within each person, for each trait. How good are they at socialising? How hypersensitive are they to loud noises, how good are they at reading facial expressions?

That's why it's so difficult.

My son and I would both absolutely be considered aspies, in terms of how we present, but what we have to do to present in that way is exhaustingly tough.

It's one of the hardest things for family to understand. If DS can be so chatty one minute, why is he mute the next? Why do we let him decide himself when he's going to leave the party?

I'm never going to make him behave the way others wish, because it hurts him, and he pays for it for days afterwards.

If he could walk a few steps before needing a wheelchair, most people would think it barbaric to take away the wheelchair and say "well you can obviously walk, so you don't need it". This is no different. You just can't necessarily see the impact immediately.

ABA is the science of behaviour, applied to socially significant behaviours. In my role this means applied to situations that would improve quality of life.

ABA...when delivered with love...is a play based therapy that aims at teaching skills to help a child to achieve skills that help them to be able to make THEIR voice heard, to explore THEIR interests, to interact with THEIR family with LOVE and less frustration and to be able to be integrated into THEIR community without worry of risk (e.g., to themselves or others).

Skills are broken down into small meaningful chunks and combined with positive reinforcement to help a child achieve. If children cannot achieve certain skills that would HELP THEM to have them then you work out 'why' this is happening and what developmentally appropriate skills are missing. You then work on this until you can help the child.

You can get BAD ABA like what has been stated in some of the posts. I have seen this (though I have seen far more ABA delivered with LOVE and passion). You can also get really SHIT special schools that leave kids to rock in corners or do the same shitty jigsaws day in and day out....doesnt mean all specialist schools are shit. You can get SLT that dismisses non verbal children of their caseloads and tells parents they will never learn to communicate. You can get OT's that don't help a child to learn to feed themselves with a spoon or dress themselves and write the kids off. Doesn't mean all OT is bad. You can get mainstream schools that don't engage kids with ASD or punish a child over and over again with an outdated system of behaviour support (when the poor sod has no emotional regulation skills). Does not mean all mainstream schools are bad.

My experience of ABA as an ABA consultant is one where it is delivered with LOVE. Where the children (and in the past adults) are empowered to learn skills that will help them to have a better quality of life and to be less vulnerable. The support system for parents of children with ASD is shocking. Most parents have to fight for support for their child and whatever route a parent takes it can be at times exhausting and lonely. To then be told that they have chosen 'abuse' is fundamentally WRONG. People should learn the FACTS before passing judgement on someone that is trying their upmost best by their child. I tend to avoid reading threads and comments like some of these posted, as I have dedicated my time, my energy and my love (at times to the expense of my own mental health helping burnt out parents navigating a brutal system)...However, I am confident that what I have dedicated my life to has been GOOD and with GOOD intentions. Intentions to help and not to 'normalise' (who likes normal anyway...I know I find normal boring).

Helping a young adult to learn replacement skills so that their extremely aggressive and dangerous behaviour is reduced. Resulting in no longer needing physical restraints and not being SECTIONED (I have been in a couple of units and tried to help create plans to get a couple of young people out of their and safely back into the community....NOT ABUSE

I helped a 5 year old who had been expelled from mainstream school for aggressive behaviour and outbursts. This took about a year to teach lots of developmental skills to help him. Lots of language difficulties (upper language), perspective taking and emotional regulation. He then went back into school with minimal support...NOT ABUSE

I have helped a small handful of children with Verbal Dyspraxia/DCD and ASD who were completely written off (but upon my assessment had the capability to do well). Parents told they would never learn to talk, never learn to ride a bike, never be able to access learning in a mainstream school. Those kids are doing all of those things now (mainstream on part time basis for lessons that are meaningful to those children, whilst they work on life skills, community skills, hobbies and language skills etc at other times). One boy was able to choose his own sound track to dance into his annual review to (and we all joined him in it)....NOT ABUSE

I am helping a little girl to develop her emotional regulation skills and upper language skills. She is often socially stigmatised, left out and is very susceptible to being bullied and is likely to be a vulnerable young adult if she is continued to be left with NO INTERVENTION. She is doing well and learning helpful skills to use when her emotions feel too big or uncomfortable for her. She is learning to take the perspective of her mother, so that she can understand how she might feel is she hurts her and she is doing so so well with a play based and positive approach to normalising all emotions but learning what behaviours are useful/not useful and the implications of engaging in these ....NOT ABUSE

For the most part, I walk into homes, schools, nurseries etc and I am greeted by children whom are very excited to see me. I was caught up in chatting to a child's teacher this week, before greeting them and they let me know this by approaching me and putting their arms up, pulling me down to their level, looking in my eyes and giving me the biggest hug and having a go at saying 'hi'.....I KNOW that what I have done and continue to do for these children is delivered with LOVE and the very best of intentions using methodologies that are play based, child centred and with positive reinforcement.

A blanket statement that all ABA is ABUSE is misleading and is dangerous. I am not sure if I will come back to the thread or not. I changed my name to post this incase it is helpful to any parents that feel stigmatised by their choice or any parents that are considering this for their child but I do not have the emotional or mental energy to get into any debates with person's who's opinions and perspectives can not be changed via respectful discussion.

PennyRa
How many ABA programmes have you seen first hand in the last five years?

If my autistic siblings had received ABA, it's possible my childhood could have been just about bearable.

Well this is depressing as fuck

Speech and language therapy, Makaton sign supported communication, PECS. All effective in various ways, all rigorously tested. That's just immediately off the top of my head as a parent.

It is, although it depends if you suggest something else might have helped, or if you are suggesting NT children in a family should just suck it up when faced with dangerous and distressing behaviours from siblings.

I'm not sure how this approach is so different to how all children learn? Is it more repetitive, so an intervention to change behaviour can take much longer? Would a NT child learn after say a couple of times, whereas someone with ASD would need much longer?
I 'm trying to understand how it differs to how any of us learn?
Take the example of taking clothes of in public. Many toddlers do this, or attempt to do this both NT and ND. What are some of the different types of intervention to prevent this happening and how would play therapy differ from ABA to get the required result, ie not taking clothes off?
Am i understanding correctly that some people are opposed to the method and not the result. So it's better to use a different method, rather than it's better to not try to modify some behaviours. Surely everyone can recognise that some behaviours need modifying, to enable fuller participation in society.

I see that in the example I've chosen most NT children would stop taking clothes off, of their own accord at a certain point, so maybe this wasn't a good example.

It didn't matter how much you say it was done with the best of intentions... "I mean well" butters no parsnips - you need to listen to autistic adults.

They're not lying. They're not whinging because they didn't like their teacher. It's not helpful to say "that's not my experience of ABA" as a provider, because all we should be concerned with is the long term impact on the client.

Undoubtedly, you can make a case for some of it if you're trying everything to avoid dangerous behaviours, but it's like saying stomach bypass surgery is wonderful for all overweight, fat and morbidly obese people.

The surgeon may well say that. The doctors dealing with the outcomes of malnutrition, excess skin, and myriad long term side effects, may well think differently.

I know that's a weird analogy, but was just speaking to someone about it.

I was horrified to hear a Harvard psychiatric professor last year, diabetic describing autism as a disease. Not only is it offensive, it's not true. But here is this man who's every word is supposed to be golden because of his credentials.

Just because you think you know how to "fix" autism, doesn't mean you know what it's like to be in the receiving end.

I was willing to hear that it had changed dramatically from adult experiences of 10, 20 years ago, but from pps above, it sounds as if it's still based on fixing broken kids.

This is such an important factor. Having a sibling with autism is really challenging. If the nd sibling has aggressive behaviours and lashes out it is even worse.
💐 for you.

My high functioning children have had to sacrifice a lot for their sibling - activities, me coming to parent’s evenings and meetings, going ti the cinema/pizzarestaurant/cafe/just out as a family is a near impossibility.
They had to put themselves to bed from an early age, no time for reading or playing with me. It was hard and quite lonely for them.
They love their sibling, and now they are older teenagers have more understanding for the challenges we have had. But it has been a tough path for them.

The few family outings we have had, including holidays were made possible on a few, carefully planned occasions, much thanks to her ABA programme. And to patient parents (mine) and an extremely patient and understanding step father + step-siblings.

I have an ASD young child and my view of ABA is controversial. I don’t share it but given this is anonymous here goes…

In my personal experience it’s usually those with ‘high functioning’ or at least ‘basic functioning’ ASD children who are really judgmental and condemning of it. They can’t possibly understand why anyone would want to stamp out those ‘unique qualities’ like a bit of stimming or social difficulties. All whilst their kids go to normal schools, communicate and function with a few challenges but generally managing.
These parents are so venomously passionate about ABA being the devil and offer no empathy or understanding that actually those with low functioning children are living a totally different life to them. ASD is a broad spectrum and life with a high functioning child is in no way comparable to a low functioning one. That’s like saying someone with a limp is the same as someone in a wheelchair… it’s obviously not the same thing. They’re both mobility issues but they are not the same!

Those of us with kids who, if they stay like this, will never live independently, or have any sort of autonomy over their lives. Those of us who lie awake at night wondering what sort of crappy NHS care home our kids will be in once we aren’t here to look after them anymore… we are generally much less condemning of ABA. Frankly we would try anything to give our kids the chance at freedom and autonomy in their futures.

*mainstream schools

I think if ABA reduces the autistic person's vulnerability, helps to keep them and the people around them safe, helps them communicate their needs, facilitates the building of positive relationships - then it is not abuse. I can't imagine stimming (if it is a safe movement, not head banging) is on anyone's list of priorities to try and change. The thing is - as from the other thread - some of people supposedly speaking out for autistic people have no clue about severe autism and how it affects the individual and their families. You end with parents who do go down the ABA route being horribly judged. I mean the people going on about eye contact - lots of autistic people, severe or otherwise, have absolutely no issue with eye contact - I'm not sure why that is singled out as a thing. Just shows the lack of awareness.

To my mind it really is not about fixing broken kids. My children are not broken.
They are lovely and beautiful and need extra help in maneuvering their surroundings and in looking after themselves.

For my DD this service was one of several I could choose. She tried other approaches, but they did not help her in her need to organise herself and in her strong wish to interact with other people.
Using this technique has given her lots of confidence - never once as a detrimental activity for her.
I was very involved with the nursery and later school, and the health specialists who travel around teaching the method.

There are behaviours that signal distress - then we must work on finding out what causes the distress rather than trying to «fix» the symptom. For example biting and hitting others, or banging their own head on hard surfaces. Even if that is stimming it is not sustainable or healthy long term - best practise is to identify the stressors and mitigate or avoid them.

I realise people do have bad experiences, but a blanket statement that ABA is abuse is very much wrong.
Rather, could we bring to the forefront ways that people with autism need to organise their days and interactions to avoid overstimulation?

I have to organise my days very carefully. I learned that the hard way, not knowing that all my crashes and «depressions» were me not coping well with too much going on in my days. I spiralled downwards and ended in trouble.

This. You say what I’m trying to say much better!

Any "benefits" or "progress" you can get through ABA you can get without abusive methods

You are just being goady and I'm almost certain you have never worked in forensic services. ABA forms part of PBS plans and it changes lives without it some people would never be able to leave locked units for time in the community. With the strategies people end up moving on to fulfilling lives in the community and not in hospital !!!