It is deplorable that a young woman with autism died after gaining 10 stone in weight during the seven years she was detained – mainly alone in a padded room – at a private assessment and treatment centre (Patient with autism put on 10 stone during years alone in padded room, coroner rules, 25 November).
The misconception that some people with autism behave in a way that is so challenging they cannot be supported to change their behaviour resulted in a tragic outcome for Stephanie Bincliffe and her family. We believe every person with autism deserves to be supported in a way that helps them to thrive and achieve. Mencap and the Challenging Behaviour Foundation have called for the Department of Health to order an independent inquiry into the death of inpatients with learning disabilities. In the case of Stephanie Bincliffe, we echo the need for an independent inquiry to investigate her death and to address her family’s concerns about her treatment.
Jolanta Lasota
Chief executive, Ambitious about Autism
We read with great sadness about Stephanie Bincliffe. There is a science much underused in the UK – yet in mainstream use elsewhere in the world – that might perhaps have helped. Applied behaviour analysis would have instituted a functional analysis (ie an assessment that explains why the behaviour is occurring) and put in place a plan of action for her self-harm. Nice guidelines recommend such functional analyses for behaviour that challenges: behaviour analysts are the professionals trained to carry them out. ABA is much used in the early years for children with autism, but can have application at any age. There are 160 masters-level board certified behaviour analysts in the UK – perhaps this tragic case will prompt such establishments to seek out their expertise in the future.
Dr Neil Martin, Dr Jenn Austin, Dr Mecca Chiesa, Kate Grant, Suzy Yardley, Mandy Williams, Jane McCready, Shelley Swain, Richard May
Board of the UK Society for Behaviour Analysis
I am a “hospital manager” at a low-secure inpatient unit specialising in treatment of people with learning disabilities and challenging behaviour (Society, 26 November) – despite the title an independent panel with the power to discharge a patient against the advice of the responsible psychiatrist). I have just come back from hearing a case concerning someone with very low IQ who prior to admission had been uncontrollably aggressive and dangerous to family and others, and had not responded to treatment. Now under intensive care of staff at the unit he is experiencing a much better quality of life.
However, what does frustrate members of our panel is the fact that when the therapy is successful, and patients have learned to control their aggression and/or self-harming behaviour, so few commissioning authorities have community sheltered facilities to which they can progress. This is a real scandal. We often cannot release a person from section because we cannot be certain that he or she will be safe once in the community. So we must not create the idea that there is no need for intensive care in secure settings. But we owe it to the people concerned, and to their families, to campaign for many more places where they can come off section, but with proper care in place to enable them to live safely.
Martin Vye
Canterbury, Kent
