Missed Diagnosis or Misdiagnosis? Girls and Women in the Autism Spectrum. Dr Judith Gould Director The NAS Lorna Wing Centre for Autism

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1 Missed Diagnosis or Misdiagnosis? Girls and Women in the Autism Spectrum Dr Judith Gould Director The NAS 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 As a result professionals are less likely to diagnose girls / women even when symptoms and behaviours are evident

3 Follow up Study Kanner children seen in males 3 females Individual differences relating to gender One girl unusual development. Did not understand children s games, no interest in stories especially fond of animals Two other girls passive presentation Boys more focused and interests object related

4 Asperger 1944 All the cases described were boys Sometimes girls had contact disturbances which were reminiscent of autism There were some girls with the behaviour pattern following encephalitis Suggested a sex-linked or sex-limited mode of inheritance The autistic personality is an extreme variant of male intelligence

5 Asperger 1944 cont. In the autistic individual the male pattern is exaggerated to the extreme Abstraction, logical ability and precise thinking is more common in male thought processes Female thought processes draw more strongly on feelings and instincts No girls with fully fledged pattern of autism but several mothers had autistic features Suggested autistic traits in females become evident only after puberty

6 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)

7 The TRIAD Social Interaction Social Communication Social Imagination Associated with a repetitive quality of pattern of activities

8 Diagnosis in Females Social Interaction Girls more able to follow social actions by delayed imitation. They observe children and copy them masks symptoms They are on the periphery of social activities Girls more aware and feel a need to interact socially When involved in social play are often led by peers rather than initiating contact

9 Social Interaction Cont Girls more socially immature and passive than typically developing peers In primary school more likely to be mothered by other girls but bullied in secondary school Parents often engineer or organise friendships Girls more often more socially inclined than boys and may have one special friend

10 Social Communication Little difference in acquiring speech in girls and boys Girls generally have superior linguistic abilities to boys of a similar cognitive level In society girls are expected to be social in their communication but they do not do social chit-chat or make meaningless comments to facilitate social communication Little idea of social hierarchy and how to communicate with people of different status

11 Social Imagination Girls have better imagination and more pretend play Many have a rich and elaborate fantasy world with imaginary friends but have difficulty separating reality from fantasy Girls escape into fiction and some live in another world When involved in solitary doll play they have a script and may reproduce a real event or a scene from a book or film

12 Social Imagination cont There is a lack of reciprocity in their social play and they can be controlling or domineering Social imagination does not relate only to pretence or symbolic activities it is the ability to use imagination in a social sense

13 Special Interests and Routines The male stereotype of autism has clouded the issue in diagnosis Boys are more hyperactive and aggressive and have interests in technical hobbies and facts Girls are more passive and collect information on people rather than things The interests of girls in the spectrum are similar to those of other girls animals, soaps, celebrities, fashion Perfectionism is frequently seen in girls It is not the special interests that differentiate them from their peers but it is the quality and intensity of these interests

14 The Diagnostic Criteria The current systems do not give examples of types of difficulties shown in girls 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

15 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

16 Unusual Responses to Sensory Input Over and under reaction to sensory input is an important feature for all on the autism spectrum Common in females anecdotal and clinical accounts

17 Referrals to the Lorna Wing Centre 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

18 The Importance of Diagnosis 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

19 Dale Yaull-Smith NAS Communication 2008 The fact that girls with undiagnosed autism are painstakingly copying some behaviour is not being picked up on and therefore any social and communication problems they maybe having are also overlooked. This effort of mimicking and repressing their autistic behaviour is exhausting, perhaps resulting in the high statistics of women with mental health problems.

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