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

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

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

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

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

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

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

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

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 98-116 per 10,000 1.1% 3.3-1 M/F Prevalence studies of children and adults Similar M/F ratio reported for adults

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 98-116 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 10,000 0.13% 2-1 M/F Prevalence study school-age children

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 98-116 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 10,000 0.13% 2-1 M/F Prevalence study school-age children Portugal 10,600,000 9.2 mainland 15.6 Azores per 10,000 0.12% NK

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 98-116 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 10,000 0.13% 2-1 M/F Prevalence study school-age children Portugal 10,600,000 9.2 mainland 15.6 Azores per 10,000 0.12% NK Lithuania 3,200,000 17.1 per 10.000 0.17% 1.9- 1 M/F

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 98-116 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 10,000 0.13% 2-1 M/F Prevalence study school-age children Portugal 10,600,000 9.2 mainland 15.6 Azores per 10,000 0.12% NK Lithuania 3,200,000 17.1 per 10.000 0.17% 1.9- 1 M/F

Quality of life

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’

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!

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

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

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

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

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

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

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

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

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?

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

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

“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

Personal Wellbeing Index: some international examples

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

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

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

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

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

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

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

PWI results: comparison of UK autism group v controls

PWI results: comparison of UK autism group v controls

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

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)

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?

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

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.http://autisminpink.autism.org.uk http://www.naspink2.webeden.co.uk/download/i/mark_dl/u/4012611446/4609632227/Learning%20Module%20Accessibility%20Version.pdf

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

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

Appendices

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

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

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