Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review
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REVIEW PAPER
Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review Georgia Lockwood Estrin 1
&
Victoria Milner 2 & Debbie Spain 2 & Francesca Happé 2 & Emma Colvert 2
Received: 7 April 2020 / Accepted: 5 October 2020 # The Author(s) 2020
Abstract There is increased recognition that women and girls with autism spectrum disorders (ASD) are underserved by the clinical criteria and processes required to receive a diagnosis. This mixed-methods systematic review aimed to identify key barriers to obtaining an ASD diagnosis in girls and young women under 21 years. Six themes were identified that focused on perceived gendered symptoms, namely behavioural problems, social and communication abilities, language, relationships, additional diagnoses/ difficulties and restricted and repetitive behaviours and interests. Five themes were identified as (parental) perceived barriers to diagnosis, namely compensatory behaviours, parental concerns, others’ perceptions, lack of information/resources and clinician bias. This review highlights the importance of enhancing widespread understanding and recognition of ASD presentation in females across development. PROSPERO Centre for Reviews and Dissemination (ID 2018 CRD42018087235) Keywords Autism . Diagnosis . Female . Gender differences . Barriers
Autism spectrum disorder (ASD) is characterized by social and communication difficulties, as well as restricted interests and repetitive behaviours. Historically, ASD has been thought of as a predominantly male disorder, with a recent review and meta-analysis suggesting a male:female ratio of 3:1 (Loomes et al. 2017). While the high male to female ratio likely reflects aspects of the aetiology of ASD, it is also conceivable that there are biases in perception, assessment, and/or diagnosis of ASD for females. In line with this latter suggestion, in population-based samples and with thorough ascertainment, the gender ratio can fall to as low as 1.8:1 (Mattila et al. 2011).
Georgia Lockwood Estrin and Victoria Milner joint first authors Supplementary Information The online version of this article (https:// doi.org/10.1007/s40489-020-00225-8) contains supplementary material, which is available to authorized users. * Georgia Lockwood Estrin [email protected] 1
Centre for Brain and Cognitive Development, Birkbeck, University of London, Malet Street, WC1E 7HX London, UK
2
Social, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, Denmark Hill, SE5 8AF London, UK
Some autistic females may present similarly to autistic males. However, there is increasing evidence that a female autism phenotype may exist. Distinguishing between male and female phenotypes of ASD is a complex endeavour. This is partly due to methodological bias, resulting from the inclusion of predominantly male samples, as well as the use of clinical tools designed to fit the male ASD phenotype. Such tools may not be sensitive to the differing distribution of
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