Transcript Missed Diagnosis or Misdiagnosis? Girls and Women in the

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
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
The Lorna Wing Centre for Autism
2015
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
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
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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
3.3-1 M/F
Prevalence studies of
children and adults
approx. 1.1%
Spain
Portugal
46, 951,000 12.97 per
10,000
10,600,000
Lithuania 3,200,000
2-1 M/F
school-age children
approx 0.13%
9.2 mainland
NK
15.6 Azores
per 10,000
ave approx
0.12%
17.1 per
10.000
Similar M/F ratio reported
for adults
Prevalence study
1.9- 1 M/F
Prevalence study
school-age children
Prevalence study
school-age children
approx 0.17%
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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
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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…?
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]
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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.”
0
1
2
3
4
5
0= No satisfaction at all
6
7
8
9
10
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 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
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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
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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
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Training Presentation for families, carers and professionals
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TV documentary film
•
Online book of life experiences by women volunteers
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Visit European Parliament in Brussels to brief MEPs and lobbying
groups about findings
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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