1. Richard Mills Research Director, Research Autism
Autism in Pink Exploring the lives and experiences of autistic women in four countries of the European Union A research programme funded by the Lifelong Learning Programme of the European Union
Richard Mills
Research Director, Research Autism
Research Fellow, Centre for Applied Autism Research; Dept. Psychology, University of Bath
Senior Research Fellow, CASD, Bond University QLD, Australia
Advisor; Associate Consultant AT-Autism UK
NS and AP assisted with workshops

2. Thanks and acknowledgements
Thanks to
Colleagues at the National Autistic Society, particularly the the research team Judith Gould and Sylvia Kenyon and to Carol Povey at the Centre for Autism.
AIP partners, staff and volunteers and colleagues at EU
Professor Bob Cummins, Director of Australian Centre on Quality of Life (ACQOL) and members of the International Well-Being Group (IWBG) for their advice and use of some of the materials included in this presentation
Kabie Brook for the idea for the photographs
A special thanks to all of the women in the four participating countries

3. Coming up Background and aims
Prevalence of autism in females in the four EU countries
Quality of life and subjective wellbeing
Stress and wellbeing
The Personal Wellbeing Index (PWI)
Workshops – the UK experience
Discussion Limitations and Conclusions
Take Home Points
Materials

4. Appendix 2 the film http://www. naspink2. webeden. co
Watch the documentary

5. Take-home points Findings
Compared to NT peers autistic women experience reduced subjective wellbeing
across all domains of the Personal Wellbeing Index (PWI) but particularly in personal health, safety and future security
Women value the importance of happiness in their lives
Recognise personality type and stress and anxiety, depression and mood
Important to measure QOL and outcome in autism
No two lives are the same
Life is complicated

7. Background to the Project
2009 conference by Research Autism, autism in women and girls chaired by Dr Lorna Wing
Led to successful EU bid (lifelong learning Programme)
National Autistic Society UK led project

8. Aims of Project
Learn more about quality of lives of younger autistic women
Increase public awareness
Improve knowledge of families and professionals
Inform policy
Produce materials and a documentary film
Understand the prevalence

9. Prevalence of ASD overall
The reported prevalence of autism in participating countries
Country
Population
Prevalence of ASD overall
M/F ratio
Comment

10. Prevalence of ASD overall
The reported prevalence of autism in participating countries
Country
Population
Prevalence of ASD overall
M/F ratio
Comment UK
62,041,000
per 10,000
1.1%
3.3-1 M/F
Prevalence studies of children and adults
Similar M/F ratio reported for adults

11. Prevalence of ASD overall
The reported prevalence of autism in participating countries
Country
Population
Prevalence of ASD overall
M/F ratio
Comment UK
62,041,000
per 10,000
1.1%
3.3-1 M/F
Prevalence studies of children and adults
Similar M/F ratio reported for adults
Spain
46, 951,000
12.97 per 10, %
2-1 M/F
Prevalence study
school-age children

12. Prevalence of ASD overall
The reported prevalence of autism in participating countries
Country
Population
Prevalence of ASD overall
M/F ratio
Comment UK
62,041,000
per 10,000
1.1%
3.3-1 M/F
Prevalence studies of children and adults
Similar M/F ratio reported for adults
Spain
46, 951,000
12.97 per 10, %
2-1 M/F
Prevalence study
school-age children
Portugal
10,600,000
9.2 mainland Azores per 10,000
0.12% NK

13. Prevalence of ASD overall
The reported prevalence of autism in participating countries
Country
Population
Prevalence of ASD overall
M/F ratio
Comment UK
62,041,000
per 10,000
1.1%
3.3-1 M/F
Prevalence studies of children and adults
Similar M/F ratio reported for adults
Spain
46, 951,000
12.97 per 10, %
2-1 M/F
Prevalence study
school-age children
Portugal
10,600,000
9.2 mainland Azores per 10,000
0.12% NK
Lithuania
3,200,000
17.1 per
0.17%
M/F

14. Prevalence of ASD overall
The reported prevalence of autism in participating countries
Country
Population
Prevalence of ASD overall
M/F ratio
Comment UK
62,041,000
per 10,000
1.1%
3.3-1 M/F
Prevalence studies of children and adults
Similar M/F ratio reported for adults
Spain
46, 951,000
12.97 per 10, %
2-1 M/F
Prevalence study
school-age children
Portugal
10,600,000
9.2 mainland Azores per 10,000
0.12% NK
Lithuania
3,200,000
17.1 per
0.17%
M/F

15. Quality of life

16. Quality of life How do we measure ‘quality of life’?
Objective criteria e.g. presence/absence of disease- presence/absence of poverty – personal possessions- family and relationships etc.
Subjective criteria our feelings about our sense of wellbeing –also known as subjective wellbeing (SWB) includes ‘self esteem’ ‘happiness’ and ‘satisfaction’

17. So what ?... why measure quality of life and subjective wellbeing (SWB)?
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
It is better for us and the country that we are happy!

18. Wellbeing (Cook 2003; Cummins et al 2006)
Subjective wellbeing (SWB) adversely affected by:-
Chronic pain
Low self esteem/self image
Lack of intimacy
Poor living conditions
Incarceration (prisoners)
Poverty
Lack of purpose in life
Personality type?
Chronic/high levels of stress and stressor events- exacerbated by lack of control

19. So, what is the relationship between stressor events and subjective wellbeing (SWB?
Very Weak Very Strong
Stressor
SWB
High
Low ?
Cummins 2012

20. The Relationship Between Stress and SWB
High
Low
No stress 75
Level of environmental challenge
Cummins 2012

21. The Relationship Between Stress and SWB
High
Low
Homeostasis
No stress 75
Level of environmental challenge
Cummins 2012

22. The Relationship Between Stress and SWB
High
Low
Homeostasis
No stress 75
Level of environmental challenge
Cummins 2012

23. The Relationship Between Stress and SWB
High
Low
DISTRESS
Homeostasis
No stress
High stress 75
Level of environmental challenge
Dominant source of control
Cummins 2012

24. The Relationship Between Stress and SWB
High
Low
DISTRESS
Homeostasis X
No stress
High stress Toxic stress 75
Level of environmental challenge
Dominant source of control
Cummins 2012

25. Personal Wellbeing Index PWI (Cummins et al; Deakin 2006)
Measuring subjective wellbeing (SWB)
The Personal Wellbeing Index (PWI)
Establishes range for each country – HOW satisfied or ‘happy’ people feel
Disadvantage can be identified by reference to the ‘normal’ range
Data can be analysed OVERALL or DISTINCT domains

26. Personal Wellbeing Index (PWI) (Cummins et al; Deakin 2006)
Why the PWI ?
Compatible with EU
Adopted in over 40 countries
Translated into more than 20 languages
Reported in more than 120 journal articles
Succinct and free
?Autism-friendly?

27. Personal Wellbeing Index (PWI)
(Cummins et al 2006)
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.”
No satisfaction
at all
Completely
Satisfied 1 2 3 4 5 6 7 8 9 10

28. HOW SATISFIED ARE YOU WITH DOMAIN your life generally? * General
Personal Wellbeing Index PWI (Cummins et al; Deakin 2006) Questions and domains
HOW SATISFIED ARE YOU WITH
DOMAIN 1
your life generally? *
General 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
1- 9 Used as topics for each workshop
* Added 2012

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

30. Personal Wellbeing Index: some international examples

31. Other factors in subjective wellbeing Neuroticism & Personal Wellbeing Index
Norway Romania Mexico Hong Kong Australia Italy
International Well-Being Group (IWBG)

32. Other factors in subjective wellbeing Neuroticism & Personal Wellbeing Index
Norway Romania Mexico Hong Kong Australia Italy
International Well-Being Group (IWBG)

33. Subjective wellbeing does not seem to be related to level of neuroticism

34. Other factors in subjective wellbeing Extraversion & Personal Wellbeing Index
Mexico Australia Norway Romania Italy Hong Kong
International Well-Being Group (IWBG)

35. Other factors in subjective wellbeing Extraversion & Personal Wellbeing Index
Mexico Australia Norway Romania Italy Hong Kong
International Well-Being Group (IWBG)

36. Subjective wellbeing does seem to be related to level of introversion/extraversion

37. The UK Group Workshops and results
Held monthly throughout project
Collect data and facilitate discussion focussed on wellbeing
Single domains of the PWI used as the structure for each workshop
100pc attendance
Output to produce a guide and learning materials for autistic women by autistic women
Follow-up planned for 2016

39. PWI results: comparison of UK autism group v controls

40. PWI results: comparison of UK autism group v controls

41. Other points from workshops
Are M/F differences more to do with social factors?
Masking of ‘autism characteristics’
= adverse outcomes such as stress, anxiety, depression, exhaustion
= employment and relationship conflicts
Sensory overload
= tiredness- fatigue- exhaustion- irritability –panic and meltdown
Future insecurity a significant issue for participants
Introversion correlated with low SWB
Awareness of these factors and how to deal with them is very important

42. Initial findings Autistic participants scored lower on the PWI
The PWI is promising for use with autistic people
Provides a thematic and structured means of organising information – and facilitating group work. Tangible outcomes
Rewarding for participants (no dropouts)
PWI will reflect individual characteristics- Extraversion strongly correlates with positive SWB and vice-versa (Cummins 2014)

43. Discussion Implications…… ?
Does being autistic mean a lower quality of life … or is it just different – what role autism and personality type? what role stress? happiness ? Interventions?
Measuring outcomes – are current measures fit for purpose?
Does the act of measuring quality of life and stress help us get control - and help us play to our strengths and manage difficulties better ?
In autism is the PWI more a tool to focus discussion than measurement of QOL?

44. Limitations Small numbers n 48 Short study time –need for follow up
Inadequate data on age matched controls – autistic males – NT males and females.
Selection for project based on self referral –? Representative?
Prevalence data sparse-small studies (apart from UK)
Inconsistent interpretation of PWI manual

45. Conclusions In summary, the project met its aims
Provided a meaningful, enjoyable and valuable experience for the women
Findings presented at conference in Lisbon and meeting with EU MEP’s
Further work and collaboration between the four countries and on the development of the PWI with Deakin University, Australia
Dynamic Learning Materials plus on-line book AND FILM ‘Breaking the silence’ first edition 2014
BY AUTISTIC WOMEN FOR AUTISTIC WOMEN
Follow-up planned 2016
www.

46. Conclusions
The PWI is one way of measuring and comparing subjective well being
Compares people of similar age in same country
Uses subjective criteria as to what constitutes a quality of life (makes particularly autism-friendly)
Despite some initial unknowns (Likert) provides a structure, framework and a context for meaningful discussion
PWI identified areas of concern that may not have emerged through other means and facilitated discussion on strengths and happiness

47. Take-home points Findings
Compared to NT peers autistic women experience reduced subjective wellbeing
across all domains of the Personal Wellbeing Index (PWI) but particularly in personal health, safety and future security
Women value the importance of happiness in their lives
Recognise personality type and stress and anxiety, depression and mood
Important to measure QOL and outcome in autism
No two lives are the same
Life is complicated

50. Appendices

51. Other points from workshops
Learning approach was developed
PWI Domain
Issues / Obstacles
Learning Goals
Learning Strategies
Stories to Illustrate

57. Appendix 2 the film http://www. naspink2. webeden. co
Watch the documentary

58. For more information richardmills@atautism.org Judith.Gould@nas.org.uk
Thank you
For more information