The Lorna Wing Centre for Autism 2015 Diagnosis of Women & Girls and the Autism in Pink Project Dr Judith Gould Director, The NAS Lorna Wing Centre for Autism The Lorna Wing Centre for Autism 2015

Why the Interest NAS Lorna Wing Centre increasing number of girls and women referred for diagnosis Historically there has been a strong gender bias of more males than females Autism presents differently in females Females mask symptoms better than males As a result professionals are less likely to diagnose girls / women even when symptoms and behaviours are evident Autism in Pink project learning about women with autism The Lorna Wing Centre 2015

Referrals to the Lorna Wing Centre for Autism Most likely through Mental Health Services Some of the co-morbid diagnoses are: Obsessive Compulsive Disorder Eating Disorders Personality Disorders Selective Mutism Anxiety and Depression Taking an appropriate developmental history reveals the possible underlying problem of an ASD with an additional diagnosis or mis-diagnosis The Lorna Wing Centre for Autism 2015

The Lorna Wing Centre for Autism 2015 Prevalence Overall prevalence of autism spectrum disorders is 1 in 100 What of the male / female ratio? Fombonne (2005) reviewed 37 epidemiological studies of autism and related disorders The male / female ratios varied from 1.4 to 1 to 15.7 to 1 There is still a strong gender bias towards diagnosing boys (linked with descriptions in the International Classification Systems) The Lorna Wing Centre for Autism 2015

The Lorna Wing Centre for Autism 2015 The core difficulties in autism are the same for males and females Neither women or men with autism consistently conform to the stereotype The way autism affects individuals is highly variable The Lorna Wing Centre for Autism 2015

The Diagnostic Criteria The current systems do not give examples of types of difficulties shown in girls and women and are not good at recognising autism symptoms in girls and women The methods used to diagnose are skewed to the male presentation of the condition There is a need for a wider perspective regarding social, communication and imaginative dimensions in addition to special interests and rigidity of behaviour There is a need to ask the right questions and make appropriate observations The Lorna Wing Centre for Autism 2015

The Lorna Wing Centre for Autism 2015 Gender Differences The Revised Autism Spectrum Screening Questionnaire (ASSQ-Rev) Kopp et al 2010 highlights certain items that separate girls from boys on the autism spectrum Questions in the Diagnostic Interview for Social and Communication Disorders (DISCO) Wing et al 2002 highlight the differences in the girls for all aspects of the Triad and routines / interests The Lorna Wing Centre for Autism 2015

A Research Project – funded by European Union Autism in Pink A Research Project – funded by European Union Richard Mills Judith Gould Sylvia Kenyon Emily Hillier Deborah Hillier Nicola Smith, Alex Perovic - Workshops Holly Judge - Statistics NS and AP assisted with workshops The Lorna Wing Centre for Autism 2015

Autism in Pink A research project funded by European Union looking at the experiences of autistic women in four countries Portugal Spain Lithuania UK (Lead) The Lorna Wing Centre 2015

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

Overall Aims of Project Understand the prevalence of women with autism in EU countries involved Learn more about lives of younger women with autism in different European countries Increase the public’s awareness of women and autism. Contribute to improving lives of women with autism. Improve knowledge of the people supporting and working with women with autism. Improve knowledge of the state and community in general- inform policy

Measures Used Quanititative Data forms with volunteers general circumstances Disability assessment scheduled (DAS) Section 1 of ComQol questionnaire (quality of life) Qualitative PWI questionnaire (personal wellbeing index) Questionnaire specific to project Bio graphical data collected Workshops for women with autism The Lorna Wing Centre 2015

Qualitative Information PWI – the Personal Wellbeing Index forms the starting point for the framework of the learning material to be created in workshops. all partner countries have identical domains. Domains can be adjusted to each country Can reflect broad range of ability The Lorna Wing Centre 2015

Personal Wellbeing Index PWI (Cummins et al; Deakin 2006) Chosen by project because: High Construct validity Convergent validity Reliability Sensitivity Congruent with EU quality of life values Adaptable to different partner countries Succinct and Standardised Free The Lorna Wing Centre 2015

Personal Wellbeing Index PWI (Cummins et al; Deakin 2006) “Just think of the question you have been asked in the way it makes sense to you. There is no right or wrong answer.” Questions and [domains] How satisfied are you with…? your standard of living? [Standard of Living] your health? [Personal Health] what you are achieving in life? [Achieving in Life] your personal relationships? [Personal Relationships] how safe you feel? [Personal Safety] feeling part of your community? [Community – Connectness] your future security [Future Security] your spirituality or religion? [Spirituality – Religion] The Lorna Wing Centre 2015

Personal Wellbeing Index PWI (Cummins et al; Deakin 2006) “Just think of the question you have been asked in the way it makes sense to you. There is no right or wrong answer.” 1 2 3 4 5 6 7 8 9 10 0= No satisfaction at all 10= completely satisfied The Lorna Wing Centre 2015

The UK perspective Women and Autism Workshops Sylvia Kenyon with Emily and Deborah Hillier Introduce us? Emily, Debbie and I are going to talk about the Autism in Pink workshops in the UK We held 12 workshops over a period of 15 months, the final one was in January 2014. The Lorna Wing Centre 2015

The UK group Quantitative Information 12 female research volunteers between the ages of 18 and 40 10 with diagnosis of Asperger syndrome 1 with diagnosis of Atypical Autism 1 with diagnosis of Autism Average age of volunteers – 30 years 3 volunteers were diagnosed as children under 12 9 volunteers were diagnosed as adults (after age 18) The average length of time that those diagnosed as adults have had their diagnosis is 2 years Starting with a very little bit of quantitative info The group that attended the UK workshops consisted of The Lorna Wing Centre 2015

Main Aim of Workshops Create learning materials by women with autism for women with autism, also for families, carers and professionals Other important hoped for outcomes: Learn more about women with autism Contribute to improving lives of volunteers and women with autism in general Create a forum where women with autism could enjoy meeting each other The Lorna Wing Centre 2015

Autism in Pink

Impact of UK workshops Women enjoyed workshops and the structure provided by the PWI (rather than abstract discussion). Enjoyed meeting other women and sharing strategies and experiences. Pleased to contribute to research and to formation of learning materials The Lorna Wing Centre 2015

Results of workshops for all Countries The women in the different countries showed a range of experiences. Overall what stood out was: Consequences of autism still associated with men impacts on the lives of women, ranging from difficulties in getting a diagnosis, to difficulties in their basic human rights being upheld. Public need to be aware of “masking” of autism characteristics lead to extreme stress and exhaustion which appears to take place more in women than men Future insecurity a significant issue for participants The Lorna Wing Centre 2015

Continued…. A need for society to be more understanding, accepting and supportive and to be aware of autism, but at the same time treating people with autism as individuals, each with their own value to contribute. People with autism have a “spikey” profile of strengths and areas of need, this variability needs to be recognised. The need for future gender specific studies. The Lorna Wing Centre 2015

Project Aims Achieved Questionnaires and Interviews with women volunteers with autism Workshops with volunteers Learning Materials for women with autism and for families, carers and professionals Training Presentation for families, carers and professionals TV documentary film Online book of life experiences by women volunteers Visit European Parliament in Brussels to brief MEPs and lobbying groups about findings International Autism in Pink Conference in Lisbon-May 2014

The Importance of Diagnosis From the Autism in Pink project it was recognised that for females a late diagnosis was the ‘norm’ A late diagnosis reflected the ‘hidden’ nature of the condition A diagnosis is the starting point in providing appropriate support A timely diagnosis can avoid the difficulties women and girls experience throughout their lives Diagnosis can lead to assessment of needs in education, leisure, housing, social relationships and employment The Lorna Wing Centre 2015

Find out More www.autisminpink.net for the ebook Breaking the silence (contains the personal stories of some of the women who took part in the project, research reports, presentations from the projects International conference and study trip to Brussels to meet MEPs and other project outputs) Watch the 35 minute Autism In Pink documentary available on YouTube The Lorna Wing Centre 2015