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Introduction
Historically, autism [1] has been regarded as more prevalent in men. Initial conceptualisations
of autism, first described by child psychiatrist Leo Kanner and paediatrician Hans Asperger
(Silberman, 2015), were largely based on boys, and research samples contributing to autism
understanding have been majority male (Grove et al., 2017). This has led to the development
of an autistic profile which is predominantly male. While most professionals are aware of
autism diagnostic criteria, it is suggested that girls do not fit this profile (Happé et al., 2006).
Furthermore, autism theories have paid little attention to gender differences within the
spectrum. Indeed, Baron-Cohen’s “extreme male brain” theory suggested that autistic people
of both sexes had brains that were more masculine than expected (Happé, 2019). As such,
autistic women and girls have received less attention within clinical practice and research
(Chester, 2019). However, there is a developing evidence base, which has focused on a
range of issues that affect autistic females. Previous literature reviews have focused on
Repetitive Behaviours and Restricted Interests (RBRIs) (Allely, 2019) and camouflaging (Allely,
2019; Hull et al., 2020). This paper will synthesise and review the literature on autistic women
and girls, focusing on presentation, diagnosis and autism recognition within the general
public, family, social, educational, clinical and forensic settings.
Methodology
Received 15 December 2019
Revised 25 July 2020 A narrative literature review was conducted, seeking published articles discussing the
16 November 2020
Accepted 16 November 2020 review topic. Key databases, including Allied and Complementary Medicine, Cumulative
PAGE 194 j ADVANCES IN AUTISM j VOL. 7 NO. 3 2021, pp. 194-207, © Emerald Publishing Limited, ISSN 2056-3868 DOI 10.1108/AIA-12-2019-0050
Index to Nursing and Allied Health Literature, Excerpta Medica Database, EMCARE,
MEDLINE, PsycINFO and Pubmed were searched using variations of terms for autism, as
well as terms relative to sex and gender. In keeping with a narrative review design, strict
eligibility criteria were not applied (Ferrari, 2015). The search was limited to articles written
in English language and retrieved articles were largely published in the past 10 years. Data
relating to presentation, recognition and diagnosis of autistic women was extracted from the
papers.
Findings
The literature search highlighted papers describing gender differences in the presentation
of autism, on both domains of the diagnostic dyad, which contribute to difficulties
experienced by females in obtaining a diagnosis, alongside the low recognition of the
female presentation of autism. These findings will be presented under headings which were
emergent from the papers reviewed.
Diagnosis
Gender bias in the diagnosis of autistic women and girls is evident (Carpenter et al., 2019).
Women and girls often have their autism diagnosis missed, or diagnosed later in life than
males (Gould and Ashton-Smith, 2011; Mandy and Lai, 2017; Zener, 2019). Autism is more
frequently diagnosed in boys than girls, with a ratio of 4:1 (Barnard-Brak et al., 2019). These
ratios vary when age and intellectual ability are considered (Zener, 2019). A male-to-female
ratio of approximately 2:1 when examining individuals with a comorbid intellectual disability
(ID) has been reported (Mattila et al., 2011) and 10:1 in the absence of an ID (Barnard-Brak
et al., 2019). Barnard-Brak et al. (2019) examined how many girls may be missing an autism
diagnosis, by comparing clinic and community based data sets to national population
estimates for sex distribution. The authors reported that 39% more girls should be
diagnosed with autism than actually were, and that the sex distribution should be
approximately 28% female, rather than 18% female as reported within corresponding
population estimates. Autistic females without ID appear at particular risk of having their
needs overlooked (Zener, 2019) and are likely to “fly under the radar” (Carpenter et al.,
2019). Higher levels of parent-reported emotional and behavioural problems increase the
probability of girls having a diagnosis of autism, suggesting autistic girls may need to
present with more impairments to receive an autism diagnosis (Duvekot et al., 2017).
Potential explanations for under-diagnosis include a lack of knowledge of the female autism
profile, gendered expectations of autistic traits and stereotypes of expected female social
behaviour (Jamison et al., 2017).
Zener (2019) highlighted common pathways for women receiving diagnosis. These include
having a family member or partner receiving an autism diagnosis and then identifying signs
in themselves, recognising personal traits in accounts by autistic women, or exploring the
possibility of autism when they experience employment difficulties or burnout. Females may
therefore be more negatively affected by the time they reach adolescence and adulthood,
through experiencing mental strain from encountering difficulties, without the knowledge
these may be related to autism (Jamison et al., 2017; Zener, 2019). The below sections
describe the literature on sex differences in the diagnostic dyad of autism.
Camouflaging/masking
Research indicates that autistic females “camouflage” or “mask” their social communication
difficulties to a greater degree than males. Camouflaging has been described as the most
common reason that healthcare professionals believed autistic profiles presented differently
between sexes (Tromans et al., 2019). Lai et al. (2011) reported that male and female
autism participants were not different on childhood core autistic symptom severity
measured by the Autism Diagnostic Interview-Revised (ADI-R). However, women
demonstrated fewer current symptoms on the Autism Diagnostic Observation Schedule
(ADOS). The authors concluded that the two groups were ‘equally autistic’ as children and
speculated that autistic females may achieve more progress in socio-communication ability
in adulthood. Autistic girls have been found to use compensatory behaviours to mask their
social challenges around their peers, involving spending time “flitting” between joint and
solitary engagement, compared to TD girls who maintained joint engagement whilst moving
between groups (Dean et al., 2017). The authors felt this might indicate autistic girls have
difficulties with social synchronisation (e.g. joint attention, imitation and turn taking).
Autobiographical accounts written by autistic women describe the use of social tactics to
help them cope (Davidson, 2007).
Parents have reported that their autistic daughters were acutely aware of their differences to
their peers and that they explicitly tried to manage social difficulties at school by becoming
more quiet or cautious in their communication than at home (Sutherland et al., 2017). Stark
(2019) reported that autistic girls are more socially motivated than boys, craving friendships
and a social group. In an eye-tracking study investigating the visual attention of autistic
children towards images of faces compared to images of circumscribed interests, autistic
girls attended to faces similarly to TD girls and more than autistic males (Harrop et al.,
2018). The authors argued this could be a protective factor for social functioning, as greater
interest in social images may increase social learning and abilities. Lehnhardt et al. (2016)
found autistic women had higher processing speed and executive functions than men,
Sensory issues
Sensory issues were recently incorporated into DSM-5 autism diagnostic criteria (Duvekot
et al., 2017). Research exploring gender differences in sensory impairment is currently
limited (Gould, 2017), however preliminary evidence suggests females may have increased
sensory issues in comparison to males (Lai et al., 2011). Qualitative work has demonstrated
that autistic women experience unusual sensory issues that can contribute to feelings of
alienation from society (Davidson, 2007). As such, sensory profiles appear important within
the evaluation of autistic girls.
Education
Sproston et al. (2017) summarised the literature on awareness of autism in girls within
education, reporting that teachers may be unaware of the inconspicuous behaviour of
autistic females, due to their more amenable classroom demeanour, a lack of behavioural
problems and the tendency to camouflage. As such, it is likely that girls are less likely to
have their autism recognised in schools. This lack of recognition can cause issues for girls
within educational environments. Three key themes were reported from the interviews
conducted with autistic girls and their parents: inappropriate school environments
(including sensory problems, difficulties with peers and general pressures of mainstream
classrooms); tensions in school relationships (including problems with staff and peers); and
problems with staff responses (including a perceived lack of understanding of the girls’
needs and a lack of appropriate support being provided).
Clinical
Focus on autistic women within clinical settings is limited. Crane et al. (2019) examined
autism awareness among professionals such as psychiatrists, psychologists, neurologists,
Forensic
Studies investigating autism in prisons have largely focused on male populations
(McCarthy et al., 2015). There is no data known to the authors which has examined
autistic female prisoners, however, research has been conducted in secure/forensic
mental health or ID services. Hare et al. (1999) screened 1,305 patients for autism in the
three high secure hospitals in England. Of those who were autistic (n = 31), 29 (93.5%)
were male and two female (6.5%), a 15.5:1 ratio. In a cohort of 138 patients treated
within a forensic ID service, the authors reported that of the 42 patients who were
autistic, 6 were female (Esan et al., 2015). These studies indicate that autistic women
are present in forensic settings, yet minimal research has examined their prevalence,
characteristics, needs, experiences or treatment outcomes. A recent autobiographical
case study written by an autistic female previously detained in a forensic mental health
service described her perspective (Markham, 2019). In her account, she describes
feeling different from other patients, being misunderstood by her care team and a lack
of involvement in her care, recommending that forensic staff should receive autism
training. It is therefore possible that the needs of autistic women within the criminal
justice system are not currently being met.
Note
1. Research has suggested that there is no single way of describing autism that is universally
accepted and preferred by the UK’s autism community (Kenny et al., 2016). This paper uses
identity-first (autistic person) where possible.
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Corresponding author
Verity Chester can be contacted at: v.chester@nhs.net
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