Recently, Catherine worked with final year medical student, Caitlin Riach, on a project exploring what visting and staying in hospital is like for autistic children, and what parents think should be done to improve this. Caitlin has written the following blog about her research, and has made an infographic to share the key messages.
Autistic children and the hospital environment
Last year I approached the team at DART about an idea I had for a project looking at the experiences of autistic children in the hospital environment. This topic was of particular interest to me because it combines the main focuses of my working life so far. I am currently in my final year of my medical degree at Edinburgh Medical School, and throughout my time at uni I have worked for the Children with Disabilities Team (CWDT) in Falkirk Council. While this includes children lots of different types of disabilities, within this group autism is by far the most common. On getting to know the children, and learning more about autism and the challenges autistic people can face in our currently neurotypical-based society, I began to think of ways that these children could struggle in the loud and busy hospital environment in which I spend most of my time. In an effort to encourage inclusion wherever possible, I decided that it was important to identify barriers and subsequently find ways to remove or reduce them.
Upon further research, I discovered certain aspects of the hospital environment had already been identified as challenging by autistic people and their families, however the pool of information was sparse and not specific to the NHS. With the help of Catherine, who supervised the project, we decided to put together a questionnaire which would explore the areas of communication, sensory stimuli, planning and preparation, and bias and assumptions about autism. The questionnaire was put online and distributed by social media and word of mouth to the parents of autistic children, and we collected a total of 51 responses.
While I was not overly surprised, the vast majority of negative responses and sad stories did shock me. Though some people had excellent feedback of our national hospitals, most reported that their child found the environment challenging in some way. The communication barrier between the autistic children, their families, and the hospital staff appeared to be vast, with reports of difficulties of both the children and their parents when communicating with medical and non-medical staff. A great number also reported a bidirectional communication problem, with healthcare professionals also struggling to communicate with their child. However, the area which most surprised me with its level of impact was the aspect of sensory challenges, both of the external environment and sensations coming from the body. I was aware of the stress caused by stimuli such as bright lights and loud noise, but I was unaware that hospitals were largely inflexible in being able to minimise these stressors. As a result, the majority of the children had had a difficult sensory experience while in hospital. But more than this, it was reported that autistic children also interpret sensations from their body differently too and were less likely to be able to express what was wrong. Respondents thought that the majority of medical staff were unaware of this and were more likely to interpret unusual behaviours as “bad behaviour” which may result in a lack of necessary and appropriate care.
Based on the positive feedback, it was possible to determine ways in which services could be improved to allow autistic children to be more included within the NHS. Overwhelmingly, good responses were based on interactions with staff who were more educated about autism and were able to use more tailored explanations of what was happening, give more processing time and were better able to use distractions, indicating a need for autism training for hospital staff. Additionally, parents reported that they would appreciate modifications such as continuity of care and flexibility of appointments to make things easier. There are also ways to utilise pre-existing systems within the hospital, such as Key Information Summaries and Hospital Passports, to be able to inform staff about preferred methods of communication and potential stressors, making staff aware while removing the communication barrier.
On a final note, it struck me most that there is a profound lack of awareness among hospital staff that autistic children face these difficulties in the first place. For a lot of parents, I think their unsatisfaction with the hospital environment and staff was more to do with a lack of staff education regarding autism and the challenges they face in our society, which is geared towards neurotypical people. These challenges, however, are not insurmountable and changes implemented in the right way can promote inclusion and improve healthcare for autistic people across their lifespan. I am fortunate in my job with the CWDT that I now have a better understanding as a neurotypical individual and I can only hope to put this into use to help the autistic patients that I will treat in the future to feel more included in the hospital environment and ensure that they get the level and quality of care that they are entitled to.
You can download a copy of the infographic as a PDF here