ABA - Negative information.....

[yakkiyakkiyogi]

Hi all. This is my first post so apologies for any silly mistakes etc although I've been reading posts on SN silently for over a year.

Just as a background, DS who is 3 has now got a dx of ASD just this month. Thats all I was told and still await the long detailed report the paediatrician said he'll send out soon. Have known for a year almost that a dx of this kind will be given as the traits were quite obvious. Been to the intial signposting event by ASD Outreach too but all my info is from extensively reading books and credible websites or forums like this. I've been reading a lot about ABA, its benefits and the struggles of getting it free of cost from LAs and was starting to consider how I can go about it and was planning to ask his EP when she visits for an observation at home next week. However, I've come across a negative article about it and that too by an ABA therapist. Also seen videos from an ASD person's perspective calling it amounting to "child abuse". So now I'm super confused. Links to article and video below:

sociallyanxiousadvocate.wordpress.com/2015/05/22/why-i-left-aba/

It'll be very useful to read opinions from you all as you have been facing this for much longer than I have. Thanks :)

It's not something I would consider for my son. Mainly because I question the theory behind it, never mind some of the dubious practises.

However there are many dubious things that go on in the realms of autism therapy/cure. Many people are desperate so cling to anything that may help.

You have to remember that there is very little evidence for anything in regards of autism support. I think mainly because science still doesn't really understand it.

I tend to look to see what people in the autistic community think about various approaches. By that I mean, actually autistic people, not charities set up by parents or carers. I feel I can't go far wrong if a look to the experiences of people with autism or who have experienced various methodologies.

Some autistic advocacy groups are against aba, some don't explicitly come out for or against anything stating as long as interventions are beneficial for the person, are not purely about normalisation, are respectful and do not stress or abuse.

OP, I came across your first link this week. I have a child doing Verbal Behaviour programme based on ABA principles and I consider myself very well informed about the interventions my son receives. I have never seen anything approaching what she describes. In my son's programme there is only positive reinforcement using activities he enjoys, working on objectives set with me. My advice would be to educate yourself about interventions based on the science of ABA and alternatives that you think will help your child develop skills they will need, weigh up the quality of evidence and speak to some parents in the UK. You may also be interested to know that the PECS system is an ABA intervention, when people actually bother to do it properly as the manual requires and collect data (created by 2 behaviour analysts in the US, one of whom had additional SLT qualifications). I can't speak about ASD (not my son's diagnosis), though I know I made the right choice for my son.

ABA. It's exactly as good as the person delivering it. Or, as bad.
Many autistic adults are suspicious of what's often 'clicker training for dogs', adapted for autistic children. Note I said 'often', not 'always'. This is important. I'm not insulting all ABA people or all parents who choose ABA.
First, ABA in its original form often assumes that we can't possibly progress unless we have it. That's not so. Most autistic adults had no therapy at all, and still learned social skills.
Secondly it often assumes that we socialise in a broken way, that needs fixing. That's no so either. Our communication is different. I live in an autistic household, work in an autistic business, and socialise mostly with autistic people. And we understand each other really well. We empathise with one another. We collaborate with one another. We're not broken. We're different. We have fantastic fun together. Our way. It may not look like someone else's way, that's true.
I'm not saying that self-harm needs to be permitted, by the way. Clearly we need to work on safety first. I'm also not saying that children need no social skills training in their lives. We all need to learn basics.

Eye contact's a big one here. Many would say that we are 'broken' in our ability to use eye contact. Many ABA schemes train us to stare into eyes, offering us rewards for it. Some parents claim that they are devastated that their child won't look in their eyes. Many claim that we are 'locked into a world of our own' and need releasing from it.
In reality, we see pretty much fine out of all parts of our vision, not just the central bit. We can see you. We do love you. The brain is wired to handle input from the sides of our eyes too. Looking straight into eyes registers the same as you staring into the eyes of a tiger. For how long would you do so, just out of interest? I bet you wouldn't manage it for more than 0.5 seconds before screaming and running. Well, our eyesight registers human eyes as predatory, and that's the instinctive reaction. (Generalising). 87% of autistic adults say that eye contact is scary, exhausting and pointless for us. Most say that it is also hugely distracting, and stops us listening.
If a child was blind, how much money would parents spend teaching them to make eye contact? Well, it's like that.
So, a fair number (not all) of ABA original stuff is based on social ideas that arguably don't apply to us.
Some ABA practitioners adapt things to make it fun and respectful, and that's great. If a parent has one of those, go for it.
Others put us in intense social and sensory pain, then reward us for 'behaving' by giving us lots of sweeties. That's not OK. They need to stop it. And I speak as someone who has worked for and with ABA schools and practitioners. Those individuals truly believe they are doing us a favour - because they have no idea whatsoever how we feel or why we are responding the way we are. I can't even enter some of the spaces those children are made to sit in all day - the sensory pain is too great.
Do investigate. Explore lots of different options. But always, always assume that your fine young person deserves respect for difference.

It may help you to know that ABA is the standard treatment for ASD in America and several other countries, including the Scandinavian ones.

It is only in the UK that there is this weirdy attitude towards it. Misinformation and superstition still persists here, which I find it hard to get my head around.

Another thing to know is that ABA is literally the only intervention for ASD with any evidence base behind it. There is none for TEACCH and even less for the cheap eclectic provision which most children are subject to in this country. And less still for the benefits of SALT/ OT.

Yet prejudice remains, with a couple of regular posters predictably popping up on every single ABA thread to denigrate it.

There is nothing woo or cruel about ABA, in fact practitioners go out of their way to provide fun and joy. Cruelty lies in the 'ah bless' attitude that was the alternative for my son. Low expectations (he'll never speak) and vague, meaningless targets.

Of course we should respect the voices of those with ASD. But only to a point. You've met one autistic person, you've met one autistic person. So why should they speak for my son? My NT daughter hated going to school for years. Does that mean it's cruel to send children to school? Or that it was her individual experience.

My son is unable to make a YouTube video articulating his likes and dislikes just yet, so no one is hearing HIS voice. But I am. I hear it in the way he cries out for his (ABA) school all weekend and races through the doors every single time he arrives there. I hear it in the giggles and permanent smile he has on his face while there. And most importantly of all I hear it when he SPEAKS. The thing we were told he would never do. And I hear it when he can play with his siblings, learn through imitating them and others, and self calm instead of throwing things and screaming.

I wish that, just once, the 'autism community' would hear his voice, and that of lots and lots of other children like him. And that those who are able to speak and and articulate well don't try and claim that it is less cruel to 'respect' my son's autism by leading him on the path to institutionalisation as an adult.

Oh, and never in 6years of ABA has my child been forced to look into anyone's eyes.

there are many varieties of ABA, and types of intervention based on ABA. The good ones are really engaging and are the best way to help a child with autism to learn. There is proper scientific evidence that things like the 'Denver early start model' (which is ABA based but does more) really works. So don't reject all ABA, but do look carefully at which is best.

Pastizzi, yes to low expectations of children in eclectic provision. Agree with so much of your post.

Thanks all for offering your opinions as it'll all help me form my own opinion regarding this issue.
pastizzi - I can see your point of view especially as DS is non verbal and the thought of having him speak as a result of an intervention is very very very attractive. But can I just ask for your opinion in terms of what it says regarding "ableism", "normalization" etc. I guess what I mean is that I'm wary of the prospect of DS suppressing his behaviours or feelings to "look normal" and suffer as a result of bottling up.
Also what's the data collection for (sorry if its a dumb question)...
I've just googled the meaning of eclectic lol and I don't see it as a negative

we use ABA and in no way do we try to make DD normal. It was ABA that got DD to talk and to communicate (and a few other things). our sessions are fun and full of play. DD is very low functioning through and has learning difficulties. Salt did very little for us in terms of speech and language.

This may help parents and carers trying to decide on a therapy or system. From the well respected Research Autism group, with whom I work nationally. I also work with good ABA practitioners who use respectful methods. And with many individuals who do not speak but who use other communication methods to say their views on ABA. Any idea that it has to be ABA or institutionalisation is not correct, in my view. There's no general data to support that view, that I know of. But people are of course wise to make up their own minds. As we see here, there are many therapies etc that have strong evidence of usefulness for autism. ABA isn't evaluable by Research Autism, because its contents are so variable. (I'm not always able to speak. I couldn't use language to communicate for the first ten years of my life. If that helps. )

www.researchautism.net/autism-interventions/our-evaluations-interventions

What PolterGoose said