Background A principal difference between neurotypical people and those with autistic spectrum conditions is reliance on structure and sameness (Cohmer, 2014). There is evidence that people with autistic spectrum conditions lack flexibility of thinking (Ciesielski & Harris, 1997). The ability to react to events or small changes can trigger anxiety. Little sabotages structure and sameness more than a death.
Aims Dealing with death is difficult, and for somebody with an autistic spectrum condition, it may introduce more challenges and anxieties. Routines change, people behave unusually, emotions can be all-consuming. People with autistic spectrum conditions can experience Alexithymia, the inability to differentiate between emotions (Poquérusse, Pastore, Dellantonio et al., 2018), highlighting the need for effective and immediate emotional support pre- and post- bereavement. Hospice social workers recognised the importance of providing effective and specialised support for people with autistic spectrum conditions pre- and post- bereavement.
Methods An example of this is the use of widgets to explain death, dying and bereavement to individuals with an autistic spectrum condition. Widgets are an augmentative communication system using words and pictures to enable understanding and to processing messages. They are an ideal way to refer back to a social story or schedule to consistently communicate a message. Examples of how widgets can be used are: what happens at a funeral, what is cancer etc.
Results Feedback has been good with a high level of engagement from people with autism and learning disability. This approach led to relationships developing with services and schools around the county that support people with these conditions, facilitating consistent organisational approaches.
Conclusions Objectives are to build on achievements in terms of inclusive support. The hospice now has an inclusion and diversity working group, delivering training sessions internally and externally to raise awareness and to support others to develop practice in this area.
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