Revisiting the experiences and quality of life of autistic patients in high secure psychiatric care

Purpose Evidence suggests that autistic individuals are overrepresented within forensic psychiatric settings and present with different difficulties and needs compared to their neurotypical counterparts. With respect to high secure psychiatric care (HSPC), a 2017 survey examining the experiences of autistic patients found most reported both positive and negative aspects associated with their care, and variable quality of life (QoL) ratings. Since this, several significant changes have occurred including moving to a new hospital site, the introduction of the mandatory Oliver McGowan autism awareness training and the national strategy for autistic children, young people and adults outlining the need to improve autistic individuals’ experience of the criminal justice system. This paper describes a repeat survey of patient experiences to see whether they may have changed or improved in light of these changes. Design/methodology/approach Qualitative data about the experiences of autistic individuals detained in a UK HSPC hospital was gathered using semi-structured interviews and the forensic QoL questionnaire. Findings Consistent with the previous survey, the number of autistic patients interviewed remains relatively small yet diverse, and they report positive and negative experiences within the hospital and different QoL ratings. Positive experiences include support and therapeutic opportunities, whereas the negatives echo those in the 2017 survey – notably the perception of staff knowledge of autism and inconsistency of care. The variation in patient demographics is significant as well as their experiences and QoL ratings, illustrating the importance of individualised treatment. Originality/value The small scale survey highlights that whilst there have been many aspects of change and development in one HSPC hospital, individual experiences and QoL remain varied for autistic patients and similar to those reported in 2017, with perceived inconsistent care, a lack of awareness of individual autistic features by staff, and environmental issues frequently reported. The repeat survey suggests that despite modernisation in the physical environment, availability of more training around autism and the introduction of a national autism strategy, there remain ongoing challenges many autistic patients face within HSPC. Whilst staff autism training remains important, qualitative impressions suggest that it is not enough and there are other factors including perhaps consistency of staff that are important for an autism informed model of care.