1. Meeting of Minds 2015 “Assessing well-being and quality of life“ "Using the personal well-being index in relation to ASD“ Richard Mills UK

2. Key questions What is ‘wellbeing’? Why and how do we measure it ? Is the Personal Wellbeing Index helpful? Implications for autism? 2

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5. How do we measure quality of life? Objective criteria – e.g. absence of disease- absence of poverty – personal possessions- family and relationships etc Subjective criteria- our feelings about our sense of wellbeing- also known as Subjective Wellbeing (SWB) 5 Quality of life

6. How import How important is it – To compare QOL between countries? – Within countries? How big a deal is happiness? 6

7. Quality of Life Why measure quality of life and subjective wellbeing? 7

8. Why measure quality of life and subjective wellbeing? Happy Citizens.... (Lyubomirsky et al 2005) Positive perceptions of self and others Stronger creativity and problem solving Work harder Create more social capital Healthier Live longer Better social relationships More self-sufficient 8

9. Personal Wellbeing Index PWI (Cummins et al; Deakin 2006) Quality of life measures essentially about subjective wellbeing (SWB) – which is affected by:- – Chronic pain – Chronic stress – Lack of intimacy – Living conditions – Incarceration (prisoners) – Poverty (and loss of wealth) – Lack of purpose in life – Degree of control/autonomy 9

10. relationship between stressor events and SWB? Cummins 2012 10 Very Weak Very Strong Stressor SWB High Low ?

11. So what? Measuring subjective wellbeing How ? The Personal Wellbeing Index (PWI) 11

12. Personal Wellbeing Index PWI (Cummins et al; Deakin 2006) Why the PWI ? Compatible with EU quality of life values Since 2001/2002 adopted in over 40 countries Translated in to more than 20 languages Reported on in more than 120 journal articles ‘Autism friendly’ (as in jargon free/not prescriptive- adapted for cognitive and intellectual disability) Succinct and its free! 12

13. Personal Wellbeing Index PWI (Cummins et al; Deakin 200 Questions and [domains] How satisfied are you with…? 1.your life generally (question added in 2013) 2.your standard of living? [Standard of Living] 3.your health? [Personal Health] 4.what you are achieving in life? [Achieving in Life] 5.your personal relationships? [Personal Relationships] 6.how safe you feel? [Personal Safety] 7.feeling part of your community? [Community Connectedness] 8.your future security [Future Security] 9.your spirituality or religion? [Spirituality – Religion] 13

14. How satisfied are you with your ----? “Just think of the question you have been asked in the way it makes sense to you. There is no right or wrong answer.” 012345678910 No satisfaction at all Completely Satisfied 14 Personal Wellbeing Index (PWI) (Cummins et al; Deakin 2006)

15. “Just think of the question you have been asked in the way it makes sense to you. There is no right or wrong answer 012345678910 No satisfaction at all Completely Satisfied 15 Personal Wellbeing Index (PWI) (Cummins et al; Deakin 2006) Questions and [domains] How satisfied are you with…? 1.your life generally (question added in 2013) 2.your standard of living? [Standard of Living] 3.your health? [Personal Health] 4.what you are achieving in life? [Achieving in Life] 5.your personal relationships? [Personal Relationships] 6.how safe you feel? [Personal Safety] 7.feeling part of your community? [Community Connectedness] 8.your future security [Future Security] 9.your spirituality or religion? [Spirituality – Religion]

16. UK women controlsUK women with ASD PWI RESULTS: Autism in Pink 16

17. “ How satisfied are you with your --------?” Life as a whole Personal relationships Community connectedness Spirituality/ Religion Safety Future security Standard of living Achieving in life Personal Health How people feel about the domain How satisfied people feel in general Cummins 2012 1.An overall average [Subjective wellbeing] 2.A value for each domain that can be used diagnostically as well as potentially an input to policy development 17

18. Personal Wellbeing Index 18

19. PWI: Satisfaction with life control v autism 19

20. conclusion Initial findings – Autistic participants scored lower on both qualitative and quantitative measures of the PWI ….This is important – The PWI is promising in terms of providing a thematic and structured means of organising information for autistic adults- means of facilitating group work. Leading to tangible outcomes for participants More needed on how well it measures wellbeing – Overall perception of wellbeing not the same as the sum of the parts 20

21. conclusion implications…… ? – Does being autistic guarantee a lower quality of life … or is it just different? – Are there intrinsic factors associated with autism and reduced quality of life and lower subjective wellbeing– e.g. anxiety, ‘autism symptoms’? – Are there societal factors implicated in reduced subjective wellbeing- e.g. stress, discrimination, isolation ? – Does it help policy makers identify specific vulnerabilities? – Does measuring quality of life help all of us understand issues – get control over our lives and play to our strengths? – Sometimes we just need to relax……… 21

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24. Acknowledgements and thanks to Kabie Brooke, ARGH, Highland, Scotland Bob Cummins, Deakin University, Australia Judith Gould, NAS, UK Sylvia Kenyon, NAS UK Damian Milton, Research Autism, UK The Autism in Pink women, UK Vicki Bitsika and Chris Sharpley, Bond University, Australia Mark Brosnan, University of Bath 24

25. Thank you… Richard Mills rm874bath.ac.uk 25