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.

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


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


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 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 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


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


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)


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


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


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


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



“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]



“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 UK perspective

Women and Autism Workshops

Sylvia Kenyon with Emily and Deborah Hillier


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


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


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


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


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.


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

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


http://www.autisminpink.net/

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.

Documents

autism slide

females autism

evident autism

way autism

nas lorna wing centre

autism spectrum questions

recognising autism symptoms

girls women