ABA and the right to be different
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in Epiphanies
There may well be limited general understanding here of the starting point of this discussion so I encourage you to do some research and check what I've written if you are unsure. Of course I can't control what you write and there may be ways to discuss without knowledge of the details.
Autism in children is a contested subject. There's a big proportion of people who want to see children 'progress' (particularly when they are on the more severe, non-verbal end of the spectrum).
An common system in play, which I think originated in the USA but is increasing in the UK is ABA - Applied Behavior Analysis.
Where once this was exclusively found in a very small number of specialist schools, it is now becoming a more common approach with supporting university courses, academic journals and conferences.
In general, the objective is to get children to be less autistic. This is done by rewarding 'correct' behaviours. For example, children experience ABA as a card game where they have to identify pictures of objects. When the correct word is used, the child is rewarded. If wrong, the exercise is repeated over and over again until the correct response is given.
Also common autistic behaviours are strongly discouraged, such as stimming.
The ABA system is strong on measuring behaviours and plotting 'improvements'.
Adults who experienced ABA as children often report extreme trauma arising from it and the pressure of repeating the same activities over many hours at school.
https://en.m.wikipedia.org/wiki/Applied_behavior_analysis
There are various things to discuss here.
* How did something with such flimsy basis become so entrenched as treatment for non-verbal people with autism? The studies are often extremely small and published in tiny academic journals
* why is it thought that repeatedly pressurising a vulnerable young person over many hours to identify (for example) an image of an apple is a good thing?
* given the obvious distress both caused to the young people and described by adults who experienced it as children, why is this considered acceptable?
--
And perhaps more generally,
* How is it that conversion therapy (there are reported links between the originators of ABA and conservatives pushing gay conversion therapies) is entrenched in our society/societies?
Autism in children is a contested subject. There's a big proportion of people who want to see children 'progress' (particularly when they are on the more severe, non-verbal end of the spectrum).
An common system in play, which I think originated in the USA but is increasing in the UK is ABA - Applied Behavior Analysis.
Where once this was exclusively found in a very small number of specialist schools, it is now becoming a more common approach with supporting university courses, academic journals and conferences.
In general, the objective is to get children to be less autistic. This is done by rewarding 'correct' behaviours. For example, children experience ABA as a card game where they have to identify pictures of objects. When the correct word is used, the child is rewarded. If wrong, the exercise is repeated over and over again until the correct response is given.
Also common autistic behaviours are strongly discouraged, such as stimming.
The ABA system is strong on measuring behaviours and plotting 'improvements'.
Adults who experienced ABA as children often report extreme trauma arising from it and the pressure of repeating the same activities over many hours at school.
https://en.m.wikipedia.org/wiki/Applied_behavior_analysis
There are various things to discuss here.
* How did something with such flimsy basis become so entrenched as treatment for non-verbal people with autism? The studies are often extremely small and published in tiny academic journals
* why is it thought that repeatedly pressurising a vulnerable young person over many hours to identify (for example) an image of an apple is a good thing?
* given the obvious distress both caused to the young people and described by adults who experienced it as children, why is this considered acceptable?
--
And perhaps more generally,
* How is it that conversion therapy (there are reported links between the originators of ABA and conservatives pushing gay conversion therapies) is entrenched in our society/societies?
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Doublethink, Admin
As a girl and young woman, there were gender expectations of me which I simply couldn't fulfill because the way my neurology manifested meant I was never going to be a tidy domestic person concerned with clothes and appearance and housework and successful socially. ( And autistic men will have similar tales to tell of how they were told they were doing man-stuff wrong and punished)
This will be true of a lot of non-autistic people too - but it's being AuDHD [autistic and ADHD] in my case and caused me deep distress because I was criticised and shamed a lot because of 'failing' on these points - attacks from my mother often began 'If you were any lassie at all...' when her feckwitted excuse for a daughter yet again failed to remember or to read her mind or to naturally see the domestic world as she did and go clean intensively of my own accord instead of reading about astronomy or archaeology or history and not understanding how my poor ability eg. to dust made me such a bad person and a gender failure...)
Reader, if behavioural conditioning of punishing and shaming for doing the wrong thing in this case or not being able to do things worked with autistic people, I would be Marie Kondo.
It strikes me that in some ways acceptance of conversion therapies grows out of attitudes about parenting and intolerance of difference or not realising that ND children may have legitimate differences that need support not curing.
Sending children/adolescents to conversion therapies is something some parents do to young people when their parenting can't get them do what they want or behave in the way they think is normal - so they bring up the big professional guns but in conversion therapies it seems a fair bit of that is harmful types of parenting writ large and paid for.
Here's an example being critiqued by Ann Memmott:
https://thinkingautismguide.com/2023/05/aba-therapists-need-to-stop-traumatizing-autistic-children.html
The problem is (as I understand it) that inflicting distress to get people to conform often has really bad longterm consequences which outweigh any gain and the 'gains' can be very temporary.
For instance I could dust and hoover and clean to an acceptable standard if someone traumatised me and scared me repeatedly and was there to punish or scold me for failing and make me think of myself as a complete gender failure. If researchers had taken over from the parent traumatising me, and applied their chosen method of inflicting distress which succeeded in making me do these things, then they and the parent would have counted this as a 'success' which had increased my capabilities and progress and would have published it as such.
But the real outcome of conditioning by distress was an adult with severe anxiety and self-loathing who couldn't keep a house clean and kept berating themselves because they couldn't, because of course I ought to be capable of it and was just 'dirty' 'lazy' and 'selfish'. So it took decades for me to understand that as a monotropic person with poor executive function except in a tiny number of specialist areas where I over performed that I wasn't a moral failure but had good reasons why I couldn't normally do this and needed help.
I now have a helper I pay who comes from from a charity which trains its staff on disability-awareness and understands neurodiversity ( help that isn't available for young people - I aged into being eligible) and now have a clean house for the first time in years and it makes me feel so much better! Though I still have to battle guilt that I don't deserve this help even though I'm paying for it and was assessed and found eligible.
So all the well-intended pressure on me achieved in the long run was to traumatise me and make it take decades longer for me to get the help I needed. The parental relationship it took place in is still a badly damaged one.
So that's why conversion therapy is still so acceptable - it's seen as something parents are entitled to do and the harmfulness of using distress to teach and condition isn't yet fully understood.
I can also say a bit about what having some aspects of autisticness suppressed is like - I learned for example to sit very still and not to stim to avoid negative attention but now am letting my suppressed stimming come back - hand flapping, fiddling with things, repetitive movements come back in places where I can be safe, and it is so relieving and so good for anxiety, and healthier - for one thing I used to pace when I thought about things and got mocked for doing so but bringing it back means I have a natural way to move more and not be sedentary. If these kind of stims are being trained out of people, then my experience is that its harmful and makes it harder for example to regulate anxiety.
Conditioning autistic people by denying them access to comforting things like things connected to their special interests or small children's loved items as mentioned in the article above is also cruel. Something I learned as an adult working with a good psychologist (herself AuDHD) was the restoring and healing power of 'special interests' which we harnessed to help me recover from an autistic burnout - I hadn't realised that pursuing my special interests was so powerful - like a natural antidepressant and remover of anxiety which gave me my confidence back. So people taking away 'loved items' or time to be spent on autistic people's special interests to pressure them into not being autistic are it seems to me, almost certainly doing damage.
Because in my experience if a parent is concerned their child may have ASD and they self-refer (or get GP to refer) to CAMHS they often get a bounce back along the lines of 'your child's school is already resourced to manage the behaviours you are describing '.
There are a larger number of other schools, mainstream and Special where children with autism get tuition.
The trend is that ABA ideas are extending beyond those very specialist Special Schools and are being now encouraged in mainstream Special Schools.
This link is by ABA enthusiasts but I think correctly illustrates the current situation with regard to ABA in British schools:
https://www.abaa4all.com/aba-in-the-uk
As it's often practiced on nonspeaking autistic folk - it's worth hearing from nonspeaking contributors. This South African article from the Autistic Strategies Network has gathered some perspectives
https://autisticstrategies.net/nonspeaking-autistics-against-aba/
This journal article on 'Literacy in nonspeaking autistic people' might also be of interest
https://journals.sagepub.com/doi/full/10.1177/13623613241230709
When the term applied analysis of behaviour is used here - they don’t mean a Lovaas training process. It is the process of gathering information about why a behaviour is happening, some people can tell you but non-verbal people usually can’t. So for example, if you collect incident forms over a month, and they show that every lunchtime - when it is noisy and busy in the school canteen, the individual is crying and rocking. You could work out that you need to find them a quieter more comfortable place to have their lunch (I realise that looks like an obvious example - but you would not believe the amount of time people’s default explanation is “oh they’re just attention seeking”.)
Interesting parallel there in that the same accusation is not infrequently aimed at non-binary and trans people.
I think it's a bit like the way some people assume that anyone unemployed doesn't want to work or anyone struggling with school isn't trying hard. By redirecting the cause of someone's difficulties back on the person they absolve themselves of having to care about it, advocate for vulnerable groups or confront their own privilege.
So what if the Qlet zoned out in class when the group was being taught stuff that bored him to death because he'd learned it on his own 4 years prior? So what if he didn't want to interact with other kids on the playground? So what if he didn't want to join extra-curricular activities? So what if he twirled his hair? Why did the rest of the world figure these were fault or deficits that needed correction?
I lost count of how many teachers were appalled at my standard statement at parent-teacher interviews: "Stop trying to make Qlet well-rounded; he's not going to be. As long as he can do basic self-care, maintain one or two primary relationships in his life, and learn enough social skills to be able to manage a basic work-place, he'll be fine. Let him soar with his gifts instead of fighting his so-called deficits." My measure of success seemed much too low for the teachers. However, it was my way of saying that Q-let's success was not going to be measured by their metrics.
We finally pulled him out of the public school system and home-schooled him with a fundamentalist/evangelical online Christian school. They were good for us because their theological anthropology (they wouldn't have known that phrase
I fear this sounds like bragging. If so, please forgive me. What I'm really trying to communicate is just how difficult it is for families to fight the systems that push their children into particular therapies and moulds.
Mr. Q and I are blessed to have, between us:
We also had the flexibility in our lives to take our child out of the public school system.
I have a cousin with an autistic child. My cousin has not had our educational opportunities, nor does he have the financial freedom to flex the educational system for his child. He would have not clue how to do at least 80% of what we did, almost intuitively, for our son. My heart breaks for my cousin and his family.
We have managed - even with my mental health breakdowns from dealing with the stress - because we have an unbelievable amount of privilege.
What I've seen of ABA suggests to me that it is a way of trying to force autistic people into patterns of masking that are for the benefit of the people around the autistic person, not for the person themselves. Neuro-typical people assume that autistic people could not possibly be happy in their non-neurotypical ways. GRRR.
PBS makes much, much more sense to me. It is a way of exploring challenging behaviours to discover what the child is trying to communicate, not arbitrarily seeking to terminate behaviours that are uncomfortable for the world around the child. It takes the child seriously as a human being who has needs that may be quite different from what the care-givers would immediately assume.
Yes, this.
What would, IME, be useful, is therapy to help the child and their family to understand themselves and their needs. When can you cope with the world, and when can't you? What can you do to help you accomplish things that you want / need to accomplish (rather than what someone else thinks you should want to do.)? It shouldn't be about making kids "look normal", but be about helping them become the most effective people they can be.
(Home schooling worked very well for one of our autistic kids. It worked less well for another, because they're different people, and have different needs. Public school also didn't work, and we're still trying to figure out what might.)
We're currently working through this with ADHD/ASD Daughter who throughout her school life has always had a significant number of peers who seem to be able to see "I am different" stamped on her forehead, because they take a visceral dislike to her immediately and feel entirely justified in showing it. I experienced exactly the same thing, and not just at school - I've had workplace situations where there are certain people who made it very clear they didn't like me because I was "weird". The neurodiverse become figures of fun, the person who can be mocked, who isn't taken seriously as a human being. I mean, if you think it's reasonable to make a person's day to day life miserable such that they dread going into school or work, so you can have "a bit of a laugh", it is quite clear that you do not think of that person as properly human.
I also noticed that the more "normal" and conventional - and popular - a person was, the more likely they were to be one of those people. The stereotype of the insecure bully with his own social skills issues absolutely does not apply when it comes to the bullying of the neurodivergent.
I maintain that if you want to do a preliminary screening for neurodiverse children just find out who gets the piss ripped out of them mercilessly on a daily basis with threats of or actual violence. Kids have an instinct for spotting the one who's different, and they can be utter bastards once they've found them.
The big underlying problem with ABA, however much the worst abuses within it are discontinued, is it buys into telling the neurodiverse person that they're the problem, they're what's wrong. Not the people surrounding them who frankly need to take a damned good look at themselves and realise how thoroughly unpleasant their actions and attitudes are. I know that's the bigger job, but I strongly believe its the Right Thing and the only way true inclusion will be achieved.
Seeing how two different primary schools dealt with (or, not) my son where the biggest issue was simply noise and bustle at lunch time showed how attitude is the biggest issue to be addressed - first school treated him as a problem, calling us in as he collapsed into himself when unable to cope, the second admitted they didn't have the resources to properly help him but could at least find a quiet space for him to eat his lunch. Given support at high school he's now developed his own ways of coping and is shortly off to university the other side of the country rather than doing a course at a university where he could live at home.
Normalising approaches in schools (from pre-school nurseries through to university) which address the barriers "normal" people present and helps the neurodiverse find their own approaches to deal with others while still being who they are has to be the first step. That means we get young adults going into the workplace and wider society already used to adapting their behaviour so that they aren't arseholes to those who are different, people more likely as they go through life to recognise the need for EDI initiatives etc to support others.
The problem with ABA and similar approaches is that they define the neurodiverse person as the problem to be fixed, focus on that individual, and ignore the whole society that they don't fit into. If you have a square peg and a round hole you have the option to make the hole bigger, you don't need to cut the corners off the square peg - that was an analogy used in discussion of the motion (overwhelmingly passed) at our Conference last year to call for a ban on all these sorts of practices (the only media coverage of this motion I know of). Making the hole bigger also benefits other groups who are constantly told they need to change to fit in.
I agree. What is also concerning me is the way in which some politicians and political parties latch onto this opposition to diversity as part of a populist agenda.
As I’ve suggested on the trans kids thread, fear or dislike of the different seems to be a general issue, very possibly on the increase, or maybe there are signs of people becoming more willing to be open about it. A troubling meme which has resurfaced.
Normalising, and classifying as abnormal folks who are different, is just nasty, however popular it may be becoming.
I'd go as far as to say that in many cases popularism is playing on instinctive dislike of diversity.
Part of it is exactly as Karl and Barnabas said, but there's also I think a perception that we're costing them and their class money which they don't want to spend as they want tax cuts and to funnel public spending to their mates, also employers who cram people into cheap, noisy and unsuitable open plan offices don't want to pay for reasonable accommodations for disabilities. So we're being cast as the 'undeserving' for a reason.
That's interesting. Can you unpack that a little? I'd not heard of critical psychiatry until you mentioned it and from a quick whizz around the net I'm not sure how it would interface with neurodiversity - this article (autistic author) seems to take a different view so I'm interested in your take: https://www.frontiersin.org/journals/psychology/articles/10.3389/fpsyg.2024.1149743/full
Or am I barking up the wrong tree and critical psychology is unrelated?
And/or indeed Crit Psychiatry if they are indeed totally different things. And especially if one of them is an ally and the other - not.
At the most extreme end, some critical psychologists would argue that everything in the DSM is only a human construct with no biological or physiological basis. Those at the extreme would argue that the diagnoses in the DSM represent nothing accept normal human variability.
ETA: critical psychiatry and critical psychology are two totally different creatures.
Given that, does your middle paragraph refer to Crit. Psychiatrists or Psychologists? It sounds like we're going to have to be really careful with terminology.
It's a very good article, Karl and seems to be an attempt to grapple with the sort of position Caissa is talking about.
You see where it says
This is Robert Chapman's piece which gives you an idea of what that's about
https://www.psychologytoday.com/gb/blog/neurodiverse-age/202010/will-opposing-psychiatric-labels-stop-over-medicalisation
Where he talks about the "anti-expansionist" approach he's including that anti-psychiatry movement within critical psychiatry
Chapman hits the nail on the head here
So you have a critique developed by people on the left which can be weaponised by culture warriors to attack us as shirkers and snowflakes with phoney complaints and diagnoses who are undeservedly taking money and services.
Chapman's and Eleanor Thomas's articles are grappling with that kind of approach
Critical race theory?
Critical path analysis?
I think it can be difficult to work out what’s useful, and what’s not, in all the stuff floating around on social media.
Our service keeps getting gp referrals with a laundry list of potential diagnoses they want us to assess for - and it feels like they haven’t sat with the patient and/or the family to work out what the person finds challenging and what they confident with; to try and work out what might be appropriate to look at. It is particularly frustrating because these are all assessments offered by different services with different wait times - and the person is potentially repeating their information again and again.
Critical psychiatry argues that believing that functional mental illness is a brain disease is more like a faith that doctors are obliged to believe rather than a scientific position. (Taken from a google search)
Critical psychology is a perspective on psychology that draws extensively on critical theory. Critical psychology challenges the assumptions, theories and methods of mainstream psychology and attempts to apply psychological understandings in different ways, often looking towards social change as a means of preventing and treating psychopathology.
Critical psychologists believe that mainstream psychology fails to consider how power differences and discrimination between social classes and groups can impact an individual's or a group's mental and physical well-being. Mainstream psychology does this only in part by attempting to explain behavior at the individual level. However, it largely ignores institutional racism, postcolonialism and deficits in social justice for minority groups based on differences in observable characteristics such as gender, ethnicity, religion religious minority, sexual orientation, LGBTQ+ or disability. (Taken from Wikipaedia)
People say that’s a sticking plaster / bandage approach - but, say you lose a limb in a machine in a factory with terrible health & safety, you are probably going to want people to do the stuff to stop you bleeding to death and help you recover, as much as you want the health safety situation sorted out for everyone’s sake.
In our school system I found little understanding of illness/isolation and all that comes with that. Poor social skills, school refusal, being behind academically and add possible neurodiversity to that was a nightmare. I constantly felt like people were trying to fix my kid and at times I wanted them fixed too because I was just heartbroken about their being a so different to other kids and very particular interests that no one else had with real difficulty making friends. Now I'm glad particularly in later years we didn't have to deal with horrible peers and dangerous teen behaviours and major rebellion.
We've resisted seeking any formal diagnosis because of a hatred of labels and the suspect types of interventions that seem to abound. However, would definitely like access to some of the social groups that are available for people with autism and more social interactions for the kid.
However, they don't seem interested in any of these groups, including social groups which are open to all, like a lego club or amateur theatre groups. As long as he can have time with his girlfriend (his only social contact outside family), he is happy. My Dad was never a "joiner" and suspect son is similar.
Would like to find some kind of job they expressed genuine interest in training for, but at this time no clues!!
Eye contact? No; don’t push it,very inappropriate as I have learned.
Neurodivergent? Don’t even go there.