Updated 2018.
I have some very serious questions about 'Positive Behaviour Support'.
This is my own set of questions, and not representative of any organisation with whom I work.
A concerning number of care providers in the UK are using it.
It's a form of Applied Behaviour Analysis ('ABA'). Yes, an adapted form. But it is ABA based. A later blog of mine looks at the evidence that PBS is the new way of describing ABA.
The Centre in the South East is a main training centre for this, and its standard reading list has plenty of ABA books and methods. It's fair to say that ABA is very controversial, in the autism communities. It's also fair to say that recent research (2017, 2018) shows links to suicide and to PTSD.
I've heard some arguments for Positive Behaviour Support, which I'll refer to now as PBS.
One says, "Well, the alternative to sorting out 'challenging behaviour' is chemicals and nasty restraint and violence, so obviously this is better. And because it doesn't use electric shock treatments and exhaustion to get compliance, it's much much better".
I think that's a false argument. On so many levels. For a start, there is no evidence that PBS is 'better' than other arguably-more-respectful approaches. So telling people it's this, or abusive therapies...well, that's wrong. There are lots of choices of approach available. Good knowledge of autism, working with autistic professionals and well trained Occupational Therapists for example. Not just PBS. In fact, for the vast majority of autistic people, no therapeutic approaches have ever been needed. So, what do we do when we have an individual who is in a care home setting? How do we decide what help is appropriate?
PBS, like ABA, chooses what to define as a 'challenging behaviour'. For autistic people, it turns out that almost all our natural behaviours are 'challenging', curiously
More curiously, it's our natural autistic communication that has to be silenced the most, it seems. A bit like defining British Sign Language as 'challenging behaviour', and silencing those strange flapping hands that do nothing useful (for non-sign language users). Autistic people communicate differently, and have a different sensory experience. This is the reason for our differences.
We actually did force Deaf people to communicate using spoken words. It's now regarded as abusive to force that on people against their will.
I'm concerned by things I see very regularly as a professional, from PBS Practitioners. Definitions of autistic 'challenging behaviour' which include...
Asking repeated questions? Challenging behaviour. Is it?
Rocking? Challenging behaviour. Is it?
Flapping? Challenging behaviour. Is it?
Wanting to focus on one item? Challenging behaviour. Is it?
Wanting to get away from sensory pain or social-overload pain? Challenging behaviour. Is it?
And then, PBS teams with 'highly qualified experts' analyse and record this alleged-challenging-behaviour, endlessly. Following the person relentlessly, day after day, without their consent. Some would call that stalking, but if you're autistic, it gets framed as 'therapy'.
Then, some teams set about using manipulations and psychology to get the person to..
Stop asking in non-approved ways
Stop moving in non-approved ways
Sometimes put up with sensory pain at all costs. Well, costs to the autistic person, anyway. Not to the team. Most PBS analyses I've seen do not even mention sensory difficulties for the person. No-one has even done a sensory audit of their care home settings. Non-autistic people are just guessing at it, because, obviously, that's better. Is it?
I've sat in rooms with PBS trained teams and asked them what they did to prepare for the meeting with me, as an autistic person. Nothing, they'll say. No thought for environment, no thought for communication differences. No thought for walking in drenched with perfume or aftershave, sitting me in a room filled with flickering fluorescent lighting. Irrelevant, because they are trained to manage my behaviour. Except, they're not. They've been taught a nonsense about autism, and slavishly follow the rule set. Even if the person is deeply damaged as a result, unfortunately. Even if the person is nearly starved to death to get them to 'comply'. I've seen that too. Yes, not all PBS practitioners are that bad, but the low level damage is yet to be quantified.
Hey, we've reduced those alleged-Challenging-Behaviours by 60%. Isn't that good, they'll say.
No, arguably they have silenced an autistic person's natural communication and taught them that expressing pain isn't allowed. It's not good.
I'm all for any sensible, respectful way to reduce violence and injury. Of course I am.
And I'm all for any sensible, respectful way to give people a real sense of self-worth and community, enjoyment and useful skills.
But the behaviours that are identified as 'challenging' need to be actual dangerous ones, not a way to lie with statistics. Not a way to silence people for being different. Or turn them into poor versions of non-autistic people rather than real versions of themselves.
And, what worries me? I can find no good large scale peer reviewed evidence of long term outcomes for autistic people. In fact, all I can find is endless non-autistic specialists telling me what's good for us. Doing things to us, and declaring that it's much better for us now. Is it? So where are the autistic adults promoting this stuff? There's a million of us. Why the silence from us all? We've asked for some of the autistic people who've enjoyed ABA and PBS to tell us about it, and the silence is deafening.
I worry about this kind of compliance-training. One of the 'challenging behaviours' that are to be extinguished? Non-compliance. I'm reading the PBS papers right now, telling teams how to deal with non-compliance.
You see, if a non-autistic person tells me to do something, I've got to do it, apparently. Good luck with that...
They are the masters, I'm the slave. See? Really 'nice' masters, they allege, but masters. They know what's good for me, and I don't. "Comply. Or we will make you comply by analysing why you don't, and finding out how to coerce you into doing so. Without violence, so that's OK. You agree that you don't want violence, yes, so this is better, yes? Good. I'm glad you agree. See, all our residents agree they really like this approach"
Do they? Do they even know there are alternatives? For sure it's better than being hit, yes. What a choice.
So, how does that compliance-training work when it's a predator, targeting (for example) an autistic woman in a care home? Train the person to comply with all demands, always, from any non-autistic person...and...?
It doesn't take a genius to spot some very serious safeguarding questions about PBS. Right now, there's a lot of silence. I've tried talking about this with some of the organisations who promote charities who use PBS on people. They seem reluctant to engage with me, or with other autistic professionals.
As thankful as I am for the marvellous care workers who are genuine friends to so many autistic people living in care communities.... I'd like some answers about why PBS is suddenly seen as the Only Possible Answer.
Good marketing, for sure. Yes, arguably better than an extreme example of violence or a 'chemical cosh'. But...if I was spending £500k a year as a Local Authority, I'd want more than marketing spin and possibly-invented-criteria-and-statistics to back it up.
Learn about autism, and why we do things. It's not to be 'challenging'. . Ask autistic people to visit such places and comment usefully on what's being done. When you visit, ask to speak to the autistic specialists doing the sensory audit assessments for them. And the autistic residents. Yes, they can communicate. Perhaps not in the same spoken language of others. But we can. So, ask in a way that makes sense...and wait for a response.
Ask those good questions. And spend your money wisely. Because autistic people are on average less violent than others, less likely to commit criminal acts. On average, more dedicated to helping people and improving society. More loyal, more passionate about specialist areas. In fact, absolutely wonderful, in the main.
Why it's been reduced to a list of deficits, with some making endless money out of it is not yet clear.
Thank you for listening to my questions. Good luck finding some answers.
