The double empathy problem in care

Like Sarah Ashworth (July 2019) I was upset to see that apparently nothing had been learned from the horrors of Winterbourne, as witnessed by the Panorama programme detailing similar abuse occurring now. I think Ashworth's analysis of factors that might be involved is helpful, and I agree that simply 'blaming the carers' is not productive. However, I would like to add one extra factor to consider.

It was apparent in both situations that many (if not most) of those who were being abused had autism as well as learning difficulties. My experience is that all staff (including psychologists) often still lack understanding of autism. This is not surprising, since none of us have natural intuitive understanding of autism just as people with autism struggle to understand those who don't have autism – the 'double empathy' problem (Milton, in press). Whatever our psychological skills in analysing and interpreting behaviour, we are naturally biased to the typical and need training and experience to understand autistic motivation.

Of course, there is no such thing as an 'autistic' motivation but we need to analyse the individual within the context of understanding that autism may be underlying the behaviour. Without that understanding, carers are left feeling helpless either to understand or manage any behaviour they find challenging. This leads to increasingly severe (and futile) attempts to exert control which, sadly, often leads to the kind of abuse that was shown. Added to this is that, without understanding autism, the individuals have often, inadvertently, been trained to exhibit challenging behaviour.

Analysis of many behaviour support plans in schools shows that the emphasis is on 'controlling' the challenging behaviour without identifying (and training) the alternative adaptive behaviour that is needed. As a result I often see the sad situation where the child's attempts to get needs met are ignored (even if it is called 'positive ignoring'!) until a level of challenge that cannot be ignored is reached. Vulnerable individuals thus learn to exhibit extreme behaviour to achieve their goals and, over time, these behaviours become their default mode, especially in situations where they feel trapped with no alternative.

I agree that we need to understand the institutional constraints and biases that lead to these distressing situations, but we also need to understand the 'typical' biases we show when analysing behaviour. Such biases mean that our conclusions are often misleading and contribute to the feelings of inadequacy that many carers feel when faced with untypical individuals, such as those with autism. The response may be to resort to bullying, to try to re-establish control.

Professor Rita Jordan PhD. OBE
Emeritus Professor in Autism Studies,
University of Birmingham

Editor's note: See also a perspective from Chartered Psychologist Paul Whitby.