Diagnosis of Women

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Diagnosis of Women Girls and the Autism in
Pink ProjectDr Judith GouldDirector, The NAS
Lorna Wing Centre for Autism
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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

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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

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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)

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• 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

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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

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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

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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

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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)

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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 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
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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 publics 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

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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

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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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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

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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?
• 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

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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
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The UK perspectiveWomen and Autism
WorkshopsSylvia Kenyon with Emily and Deborah
Hillier
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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

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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

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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

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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

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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.

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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

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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

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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