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The Lorna Wing Centre for Autism 2015
Diagnosis of Women & Girls and the Autism in Pink Project
Dr Judith GouldDirector, The NAS Lorna Wing
Centre for Autism
The Lorna Wing Centre 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 for Autism 2015
Referrals to the Lorna Wing Centre for Autism
• Most likely through Mental Health Services• Some of the co-morbid diagnoses are:
Obsessive Compulsive DisorderEating DisordersPersonality DisordersSelective MutismAnxiety 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
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 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
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
Autism in Pink
A Research Project – funded by European Union
Richard Mills Judith Gould Sylvia Kenyon Emily HillierDeborah Hillier
Nicola Smith, Alex Perovic - Workshops Holly Judge - Statistics
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
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 Prevalence study
school-age children
Lithuania 3,200,000 17.1 per 10.000
approx 0.17%
1.9- 1 M/F Prevalence study
school-age children
The prevalence of autism in participating countries
10
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
The Lorna Wing Centre 2015
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 IndexPWI (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 IndexPWI (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…?1. your standard of living? [Standard of Living]2. your health? [Personal Health]3. what you are achieving in life? [Achieving in Life]4. your personal relationships? [Personal Relationships]5. how safe you feel? [Personal Safety]6. feeling part of your community? [Community – Connectness]7. your future security [Future Security]8. your spirituality or religion? [Spirituality – Religion]
The Lorna Wing Centre 2015
Personal Wellbeing IndexPWI (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.”
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
The Lorna Wing Centre 2015
The UK groupQuantitative 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
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 Pink20
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 Lorna Wing Centre 2015
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
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