This document discusses palliative and end of life care for people on the autism spectrum. It explores key themes like physical diagnosis and care, psychological support, social support networks, and spiritual/cultural needs. The goal is to use personal experiences to help shape current and future support for this population. The document also notes that the Scottish government's action plan for end of life care calls for a person-centered approach that recognizes diversity.

1. Palliative and End of Life Care
for People on the Autism
Spectrum
Using Personal Experiences to Create Practice Resources
Jill Ferguson and Val Laurie
... with the help and insights of the friends, family and support staff of Stephane

2. ‘Stories give us a deeper insight into
lived experience- past, present and
imagined futures’
IRISS Insights 23: the role of storytelling in practice
As we explore the individual narratives and life
trajectories of the people we know and support, their
experiences will influence and help shape current and
future support.

5. Key Themes
Practice
suggestions
Sign posting
information
Discussion
Groups
Transcribe filmed
conversations

7. Physical
Diagnosis and Prognosis/ Identifying and Managing Symptoms/ Pain Management
and Medication/ Advanced Care Planning/ Home-Hospital-Hospice

9. Psychological
Supporting Understanding/ Minimising stress/ the impact of loss of wellbeing and
independence/ Identifying emotional responses/ creating positive experiences
How do the people on the
autism spectrum you know or
support express feelings of;
fear, depression, anger?
Are they able to label and articulate
those feelings?

11. Social
Social support networks/ redefining roles and relationships/ peer support/ family
support/ staff support/ Balancing the social needs of the person with others

13. Spiritual
Religious needs and wishes/ Cultural customs and beliefs/ personal significance
and meaning/ Selfhood/ Reflections on past, present and future

15. The Scottish Government’s national action plan for palliative and end of
life care calls for a person-centred approach to palliative care
“…which recognises the diversity of life
circumstances of people who will need
palliative and end of life care”
Living and Dying Well