I’ve made quite a study of ABA and PBS over the last couple of years. I know a good number of ABA and PBS practitioners. I have seen the methods. I have the training materials. I have the books. I have seen the course content. I’m a professional, working in autism, and autistic. I train the Royal College of Psychiarists, alongside my fellow autistic professionals. We train Psychologists, Psychotherapists, schools, colleges, organisations across the country. We haven’t just ‘fallen off the back of a turnip truck’, to use a phrase. We know what a good therapy should include, and what is a really bad idea.
I think I shall echo the words of the National Autism Project, in their report, “The Autism Dividend”:
“Positive Behavioural Support in the form of ‘active support’ may work for some children and families – but this approach is not suitable for everyone, and indeed is not without controversy”.
In fact, as far as anyone can tell, there has been no good long term independent research into the use of PBS and autism. We have no idea what the impact is of using this behaviour modification approach on autistic individuals in the long term. It is approved for use with learning disability, and has therefore been assumed OK for autism. But autism is not learning disability. Autism is different. Very different indeed. I’ve read so many examples of PBS assuming that a child has to be taught to socialise in non-autistic ways. Taught to socialise through every lunch time, every break time, every after-school event. If they can socialise just like they’re not autistic, they’re ‘accessing the community’, and that is the goal. “Indistinguishable from our peers”. Perhaps allowed a tiny flap or rock, if that’s not inconveniencing anyone else.
I would suggest that ABA and PBS needs some very thorough and continuing research. Because we are gambling with the lives of an awful lot of children. The suicide rates for autism are already stratospheric. I note the legal cases in the USA from some individuals who believe they were deeply damaged by some therapies. If we’re wrong, and we are in effect doing the same thing as the highly discredited and damaging ‘gay conversion therapy’…. we are setting an awful lot of children up to have serious consequences later in life. No matter how ‘positive’ the title of the product.
Ann Memmott on Twitter: “Important thread about realising that the Behaviour focus of autism treatment leads to distress in far too many cases. We need to Drop The B from ‘Positive Behaviour Support’. Positive support, with deep understanding of autism instead, is much better.… https://t.co/B5pVGxwTcf”
Ann Memmott on Twitter: “The NHS has now chosen to ignore concerns of #ActuallyAutistic specialists and professionals, & decided that the way to deal with pain is to apply ‘behaviour training’ to the autistic people, to stop them showing they’re in pain. I cannot begin to explain how wrong this is./“