Sunday 15 May 2016

Positive Behaviour Support and autism - continued questions

Recent months have involved me training an increasing number of therapists.  Excellent individuals. Some have asked questions about my view of some other 'interventions' and therapies.  Amongst these, Applied Behaviour Analysis (ABA) and Positive Behaviour Support (PBS).

Having worked with an ABA charity for two years, I have a good knowledge of what it involves.  I simply disagree with its principles.  There are indeed some good places and some good practitioners who adapt it to be a respectful process.  I have no doubt of this.  I know some very nice people who use ABA.  And I also have no doubt that some people find some parts of it useful to solve their particular situation.  I still do not like the underlying principles of ABA.  There are, in my view, better and more respectful starting points for working with neurodiverse individuals.  ABA often teaches children to endure pain, fear or exhaustion, very nicely.    I'd rather they were not in pain, fear and exhaustion, personally.

This PBS thing?  It interests me.  Few realise it is a form of ABA.  A lot of Councils continue to pay a fortune to places to use it in care home settings.  And yet, see if you can find out what it actually involves.  I have tried.  I got stuck in a proverbial loop of "'s evidence-based practice". What does that mean?  "Ah well, we analyse why a person behaves as they do, and gather  folder after folder of carefully indexed, colour coded data, and then we do something that changes the 'problem behaviour'.  It's evidence-based."   OK, but what behaviour are we counting as problematic? Who determines that?  On what basis?  How does the colour coded folder , put together over weeks and months, help little Jonny not be in pain any more?  Or for longer than necessary?

That's when it often goes quiet.  Difficult to find out how the PBS teams are trained too.  There's a Diploma in it, from a University.  There is a reading list.  On the reading list, the 'required reading' book.  It's called Individual Positive Behavior Supports, by Fredda Brown et al (2015, Paul Brookes Publishing). There is no electronic version, as far as I can see.  The book costs the best part of £70.  So I bought one.  Not many people will be able to afford that, to find out what it is.

PBS is used for 'challenging behaviour'.  Not specifically for autism.  But it's used a lot now as a way to get autistic people to behave in respectful ways towards others, when in intense pain, exhaustion and fear. Rather, that is, than focus on  first changing the situation causing the pain and fear.   Thank goodness non-autistic people always behave wonderfully when in pain, fear and exhaustion, eh.  Oh wait, no they don't.  So, it's just us that has to do that?

Because autism is a sensory processing difference, at its core, I turned to the contents list at the front.  Nothing on sensory needs. It talks about Applied Behaviour Analysis as the framework for PBS, though. And Ivan Pavlov's contribution to the underlying structure of ABA.  Yes, the man who did the dog training psychology stuff.

I turned to the index.  Nothing specific about sensory processing.  An entry on 'sensory stimulation', which says that environments should be "interesting and stimulating".  Not necessarily for autism of course.  Some may find 'interesting and stimulating' environments to be a sensory overload. So that may have the opposite effect from that desired.

I had a look at how PBS supports vital autistic repetitive movements ('stimming' such as rocking, flapping, etc).  P 289 tells me that, " times, problem behaviour is unrelated to the environment...for example stereotypic behaviour tends to occur more frequently amongst individuals with autism...".  Problem behaviour?  The sort that PBS trains people not to use?   Strangely enough, a lot of support plans from PBS seem to have 'extinguishing self-stimulatory behaviour' as a goal.  Yet we know from latest research that some use hand flapping as a way to gauge distance to objects, or to process what we are seeing.  Some use rocking so that we can tell where we are in relation to objects.  ABA and PBS want to take away useful adaptive strategies, in a lot of situations, because....why?  Serious question.  Yes, if it's self-injurious, of course one intervenes.  99% of stims are not.  So....

OK....moving on...what about autism itself?  There is quite a list in the index about "Autism spectrum disorders".  Not my favourite phrasing for what is a neurodiversity, not a disease or fault.  Nothing about what autism is, anywhere in the book. We learn about J, as an example, though.  J is terrified of loud noises and runs away.  Quite right too.  They cause the equivalent of an electric shock to the brain, for some of us.  This is a problem behaviour, running away from the noise, we are told.  J is taught that if he hears a loud noise at school, he is to put his hands over his ears AND point to a door so that he can leave.  Now I'm not a scientist, but will someone tell me how J can do both things at once?  Whilst terrified and in pain, possibly stunned from an internal electric brain-shock?  (Good research happening on this).  Nowhere does it help J stay in the classroom by removing the loud noises, or indeed offer J earplugs or similar.  It is up to J to learn how to ask really nicely when in distress, and do without his time in the class. By using lots of analysis, graphs, statistics, observations, plans, folders, and a form of polite repetitive coercion.  OK...
In another extract from the book, we learn that family X has a child who is autistic.  He became distressed when asked to do things causing extreme pain to autistic people (entering and staying in a noisy, smell-filled school canteen amongst jostling chatting people).  The PBS plan involved them teaching him how to adapt to the situation.  Rather than allowing him not to be in pain.

Another parent, we are told, has set a goal for their child of going to parties.  No, really.

Would any of my fellow autistic professionals  - or indeed other therapists -  like a cup of strong tea?  I need one.

I remain very concerned about what PBS is attempting to do, with autism.   

This is not, in my view, a suitable system for autism.  It has been mis-applied, in my professional view.  I'd like to see some research into exactly what is going on with this 'evidence-based' programme that seems not to know anything about autism itself.

Would you?