1. 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

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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

10. The prevalence of autism in participating countries
Country
Population
Prevalence of ASD overall
M/F ratio
Comment UK
62,041,000
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 Azores per 10,000
ave approx 0.12% NK
Lithuania
3,200,000
17.1 per
approx 0.17%
M/F

11. 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

12. 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

13. 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

14. 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

15. 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

16. 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 = completely satisfied
The Lorna Wing Centre

17. 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

18. 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

19. 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

20. Autism in Pink

21. 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

22. 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

23. 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

24. 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

25. 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

26. Find out More
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