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The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype

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Abstract

We used Framework Analysis to investigate the female autism phenotype and its impact upon the under-recognition of autism spectrum conditions (ASC) in girls and women. Fourteen women with ASC (aged 22–30 years) diagnosed in late adolescence or adulthood gave in-depth accounts of: ‘pretending to be normal’; of how their gender led various professionals to miss their ASC; and of conflicts between ASC and a traditional feminine identity. Experiences of sexual abuse were widespread in this sample, partially reflecting specific vulnerabilities from being a female with undiagnosed ASC. Training would improve teachers’ and clinicians’ recognition of ASC in females, so that timely identification can mitigate risks and promote wellbeing of girls and women on the autism spectrum.
ORIGINAL PAPER
The Experiences of Late-diagnosed Women with Autism
Spectrum Conditions: An Investigation of the Female Autism
Phenotype
Sarah Bargiela
1
Robyn Steward
2
William Mandy
1
Published online: 25 July 2016
The Author(s) 2016. This article is published with open access at Springerlink.com
Abstract We used Framework Analysis to investigate the
female autism phenotype and its impact upon the under-
recognition of autism spectrum conditions (ASC) in girls
and women. Fourteen women with ASC (aged
22–30 years) diagnosed in late adolescence or adulthood
gave in-depth accounts of: ‘pretending to be normal’; of
how their gender led various professionals to miss their
ASC; and of conflicts between ASC and a traditional
feminine identity. Experiences of sexual abuse were
widespread in this sample, partially reflecting specific
vulnerabilities from being a female with undiagnosed ASC.
Training would improve teachers’ and clinicians’ recog-
nition of ASC in females, so that timely identification can
mitigate risks and promote wellbeing of girls and women
on the autism spectrum.
Keywords Autism spectrum conditions (ASC) Autism
spectrum disorder (ASD) Diagnosis Female autism
phenotype
Introduction
Autism spectrum condition (ASC), also known as ‘autism
spectrum disorder’ (ASD)
1
is a neurodevelopmental syn-
drome characterised by difficulties with social reciprocity,
social communication, flexibility and sensory processing
(American Psychiatric Association [APA] 2013). People
with ASC are at risk of a range of emotional, behavioural,
social, occupational and economic difficulties (e.g., Howlin
and Moss 2012) . The timely identification of ASC can
mitigate some of these risks and improve quality of life, for
example by identifying needs and appropriate interven-
tions, increasing access to services, making others less
judgemental of the person with ASC and their parents,
reducing self-criticism, and helping to foster a positive
sense of identity (Hurlbutt and Charmers 2002; Portway
and Johnson 2005; Ruiz Calzada et al. 2012; Russell and
Norwich 2012; Wong et al., 2015).
Compared to males, females are at substantially ele-
vated risk of their ASC going undiagnosed: their diffi-
culties are frequently mislabelled or missed entirely (Lai
and Baron-Cohen 2015). This is shown by the observa-
tion that in non-referred samples there are between two
and three males for each female with ASC (e.g., Con-
stantino et al. 2010; Kim et al. 2011; Zwaigenbaum et al.
2012); whereas in clinical samples ascertained from ASC
services, the male-to-female ratio is usually four-to-one
or higher (e.g., Fombonne 2009). Thus, many females
who, if skilfully assessed, would meet full diagnostic
criteria for ASC, never receive a diagnosis and the help
that, potentially, comes with it. Even when females with
ASC are identified, they receive their diagnosis (and
associated support) later than equivalent males (Giarelli
et al. 2010). Furthermore, compared to males, females
&William Mandy
w.mandy@ucl.ac.uk
1
Research Department of Clinical, Educational and Health
Psychology, UCL, Gower Street, London WC1E 6BT, UK
2
Centre for Research in Autism and Education, UCL Institute
of Child Health, 55-59 Gordon Square, London WC1H 0NU,
UK
1
We use the term ‘autism spectrum conditions’ (ASC) as a direct
synonym for the DSM-5 term ‘autism spectrum disorder’ (ASD). This
is in accordance with views of members of the autism community, to
be more respectful of neurodiversity. Our use of ‘ASC’ aims to
convey that people on the autism spectrum show differences that
include strengths as well as difficulties.
123
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DOI 10.1007/s10803-016-2872-8
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require more severe autistic symptoms (Russell et al.
2010) and greater cognitive and behavioural problems
(Dworzynski et al. 2012) to meet ASC criteria, and
teachers underreport autistic traits in their female pupils
(Posserud et al. 2006). This gender bias has serious
consequences for the health and wellbeing of girls and
women with ASC, and has been identified by the autism
community as a key problem to be addressed by research
(Pellicano et al. 2014).
One proposed explanation of the ascertainment bias
against females with ASC is that there is a female autism
phenotype; a female-specific manifestation of autistic
strengths and difficulties, which fits imperfectly with cur-
rent, male-based conceptualisations of ASC. (APA 2013;
Hiller et al. 2014; Lai et al. 2015; Mandy et al. 2012).
There is an emerging evidence-base to support the exis-
tence of this female autism phenotype. For example, in line
with the reports of clinicians and people with ASC, there is
empirical evidence that girls and women with ASC show
higher social motivation and a greater capacity for tradi-
tional friendships than do males with ASC (Head et al.
2014; Sedgewick et al. 2015). Furthermore, compared to
equivalent males, females with ASC are less likely to have
externalising behaviours, such as hyperactivity/impulsivity
and conduct problems, and are more vulnerable to inter-
nalising problems, such as anxiety, depression and eating
disorders (Mandy et al. 2012; Huke et al. 2013); and
consistently score lower on measures of repetitive and
stereotyped behaviour (Van Wjingaarden-Cremers et al.
2014).
Nevertheless, research into ASC gender differences is at
an early stage, and there is currently no definitive account
of the female autism phenotype that could be used to
inform efforts to reduce the ascertainment bias against girls
and women with ASC (Lai et al. 2015). Findings on gender
differences in core diagnostic social and communication
symptoms have been inconclusive, with there being no
clear picture as to whether, compared to males with ASC,
females with ASC either show greater (e.g., Hartley and
Sikora 2009), lesser (e.g., McLennan et al. 1993) or equal
social difficulties (e.g., Mandy et al. 2012). Also, it is
uncertain whether the consistent observation that females
score lower than males for repetitive behaviours reflects
genuinely lower levels of these traits, or if female-typical
repetitive behaviours do not register on current measure-
ment tools (Van Wjingaarden-Cremers et al., 2014). Fur-
ther, it has been suggested that a key feature of the female
autism phenotype is a capacity to ‘camouflage’ social dif-
ficulties in social situations (e.g., Kenyon 2014). However,
despite promising initial investigations (e.g., Baldwin and
Costley 2015; Cridland et al. 2014; Mandy and Tchanturia
2015; Rynkiewicz et al. 2016) further work is required to
operationalize the construct of camouflaging, to prepare the
ground for the development of measures that could be used
in quantitative investigations.
These uncertainties about the nature of the female aut-
ism phenotype reflect, in part, two key methodological
challenges to doing research in this area, which have
constrained the validity of findings to date. First, most
studies have investigated participants with ASC ascer-
tained from autism clinics [e.g., see reviews by Lai et al.
(2015) and Van Wjingaarden-Cremers et al. (2014)]. This
has the effect of excluding the very participants most rel-
evant to the research, namely females who have been
missed by clinical services because their ASC exemplifies
the female autism phenotype. Second, males and females
have tended to be compared on gold-standard, well-estab-
lished measures of ASC symptoms. For most ASC research
this would be a methodological strength, but when inves-
tigating gender differences it is potentially problematic.
Such measures have been developed and validated with
largely male samples, and may lack sensitivity to the
female autism phenotype. Therefore, there is a need for
measures that are demonstrably sensitive to autistic fea-
tures as they present in females as well as males (Lai et al.
2015). Both of the methodological problems described
above would have the effect of underestimating ASC
gender differences. A further consideration is that no
research to date has sought to examine directly how the
female autism phenotype can lead to a situation whereby a
girl or woman meets criteria for ASC, but is missed by
professionals. Such investigations will be informative for
those seeking to improve diagnostic practice to reduce
gender-based inequities in ASC care.
Given the above, in order to advance the study of ASC
gender differences we conducted a study with three key
features. First, we aimed to investigate directly not only the
nature of the female autism phenotype, but also how it
impacts upon risk of a girl and/or woman’s ASC going
unrecognised. Second, we recruited women with ASC
whose autistic difficulties had gone unrecognised in
infancy, childhood and early adolescence. We reasoned
that such late-diagnosed individuals would be more likely
to exemplify elements of the female autism phenotype that
are under-represented in samples of those identified in a
timely fashion, and can provide insights into how such
characteristics led to them being missed by clinical ser-
vices. This approach is supported by the recent finding that
the gender ratio in adult ASC clinics is lower (two males to
one female) than in child and adolescent services (five
males to one female), suggesting that later-diagnosed
samples are most likely to include a representative sample
of females with ASC (Rutherford et al. 2016). Third, we
took an inductive (i.e., data-driven) approach, conducting a
qualitative investigation. Our aim was not to test
hypotheses about the female autism phenotype by formally
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comparing males and females. Rather, we sought to gen-
erate new ideas and deepen understanding of key concepts,
such as ‘camouflaging’ (Barker and Pistrang 2015). This
work is designed to yield novel, well-defined hypotheses
about the female autism phenotype to guide future quan-
titative investigations; and to promote the development of
measures that capture female as well as male manifesta-
tions of ASC.
Framework Analysis (Ritchie et al. 2003), widely
applied in health research to generate theory and promote
the development of new measures, was used to analyse
qualitative data from in-depth interviews in order to
address the following questions:
1. What is the nature of the female autism phenotype, as
experienced by late-diagnosed women with ASC?
2. How does the female autism phenotype influence
young women’s experiences of diagnosis, misdiagno-
sis and missed diagnosis?
3. How do late-diagnosed women with ASC adapt in
response to the challenges they face?
Methods
Participants
Participants were 14 women with ASC. Women were eli-
gible to participate in the study if they met the following
inclusion criteria: (1) aged between 18 and 35 years; (2)
diagnosed with ASC by a certified professional (psychia-
trist, clinical psychologist) in the UK National Health
Service; (3) ASC diagnosis was received in late adoles-
cence or adulthood (aged 15 years or older); (4) ASC
diagnosis had been received within 10 years of study par-
ticipation; (5) living in the United Kingdom; (6) without an
intellectual disability, as indicated by having an IQ above
70. Age and IQ limits for the sample were set to limit group
heterogeneity, as these variables likely condition the
experiences of women with ASC. Seventeen women con-
tacted the researcher asking to participate in the study.
Three did not meet eligibility criteria: one was outside of
the qualifying age range (51 years) and two lived outside of
the UK (USA and Australia).
Participant characteristics are shown in Table 1. At the
time of the study, seven of the participants reported being
able to support themselves through paid employment. One
had a profession, but was signed off work due to mental
health problems. The three full-time students were sup-
ported by research grants or family. The remaining par-
ticipants did volunteer work or full-time parenting. The
mean age of the participants was 26.7 years, (SD =2.3).
All their ASC diagnoses had been made since 2004, and
the mean age of diagnosis was 21.3 years (SD =4.8).
Thirteen had received their diagnosis from a specialist
autism service, having never previously been assessed for
ASC. One participant was diagnosed after assessment in a
Child and Adolescent Mental Health Service, also without
any previous history of autism assessment. The research
team did not retrieve clinical records to double-check the
veracity of self-reported diagnoses, but every participant
scored above cut-off on the AQ-10. All participants had
estimated IQs above 70 on the Wechsler Test of Adult
Reading.
Table 1 Characteristics of the sample
Participant Age at time of interview Age at diagnosis IQ AQ-10 (cut-off =6) Employment
P01 23–26 years 19–22 years 122 9 Illustrator
P02 23–26 years 15–18 years 115 6 Full time Student
P03 27–30 years 27–30 years 110 8 Health Professional
P04 22–26 years 15–18 years 113 10 Support Worker
P05 22–26 years 22–25 years 122 10 Volunteer
P06 27–30 years 23–26 years 124 9 Full time Student
P07 19–22 years 19–22 years 124 9 Fine Artist
P08 22–26 years 19–22 years 85 10 Health Professional
P09 27–30 years 19–22 years 108 8 Administrator
P10 27–30 years 23–26 years 117 9 Volunteer
P11 27–30 years 27–30 years 108 8 Full-time mother
P12 27–30 years 19–22 years 115 8 Full-time Student
P13 23–26 years 19–22 years 92 10 Volunteer
P14 27–30 years 23–26 years 110 9 Athlete
Precise age and age at time of diagnosis are not given to protect participant confidentiality
AQ-10 =10 item version of the Autism Spectrum Quotient
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Procedure
Participants were recruited via existing contacts within the
research team and through adverts placed on social media
sites frequented by women with ASC. Information sheets
were provided to eligible participants at least 24 hours
before consent was sought, and only those who subse-
quently gave full informed consent joined the study. All 14
participants completed quantitative measures of IQ,
depression, anxiety and autistic traits (see Measures) in
order to ‘situate the sample’, i.e. to give the reader a sense
of who the participants where, to inform thinking about
transferability of the findings (Barker and Pistrang 2015).
Nine interviews were conducted face-to-face, four partici-
pants were interviewed via Internet videoconferencing, and
one interview was completed on the telephone. Video-
conference and telephone interviews were conducted in
order to avoid excluding participants who did not want a
face-to-face interviews, due to anxiety, sensory issues and/
or a reluctance to engage in direct social interaction.
Measures
Semi-structured Interview
Data were collected using a semi-structured interview
schedule developed specifically for this study by the
research team, via a process of consultation with women
with ASC, expert clinicians and researchers. Thus, the
topics covered in the interview reflected the research aims,
previous research, clinical insights into the female autism
phenotype and the priorities of members of the autism
community. In line with guidelines for semi-structured
interviews, it was designed to be used flexibly, thus
allowing the interviewer freely to follow the participant’s
line of response, maximising the chances of collecting
valid, in-depth data from people with atypical social
communication (Smith 1995). The interview began by
asking women to tell the story of how they were diagnosed
with ASC, including exploration of their sense of how their
gender had impacted upon this. It then moved to consid-
eration of interests, social relationships, sensory experi-
ences and mental health. The final questions concerned the
participants’ perceptions of ASC gender differences. A
copy of the interview schedule is available by request from
the first author (SB).
Autism Quotient-10 (AQ-10)
This ten-item, self-report, brief version of the Autism
Spectrum Quotient was used to confirm clinical diagnosis,
and to give an approximate measure of ASC severity
(Allison et al. 2012).
General Health Questionnaire-12 (GHQ-12)
The GHQ-12 is a twelve-item, brief version of the GHQ-
60. It is used as a screening device to assess the respon-
dent’s current mental state (Goldberg and Williams 1988)
and is a reliable and valid measure of severity of psycho-
logical difficulties (Goldberg et al. 1997). The GHQ-12 has
a maximum score of 36. For young adults, 24 has been
established as an optimal cut-point for identifying mental
health difficulties (Makowska et al. 2002). Participants
were asked to complete the measure for the researchers to
gain an overview of the mental wellbeing of the sample.
Hospital Anxiety and Depression Scale (HADS)
The HADS is a fourteen-item self-assessment scale used to
detect depression (seven items) and anxiety (seven items)
over a 1-week period (Snaith 2003). Participants are asked
to respond to statements that best describe their state of
mind, with higher scores indicating greater symptom
severity. Both the depression and anxiety subscales have a
maximum score of 21, with scores of 8 and above being
indicative of clinically severe difficulties.
Wechsler Test for Adult Reading (WTAR)
The WTAR is a neuropsychological assessment tool, which
provides a reliable, valid and low intensity estimate of
intelligence (Holdnack 2001). In this study, researchers
used the WTAR in order to offer a quick estimate of verbal
IQ, to establish whether participants were able to easily
verbalise their experiences, to situate the sample and to
check that participants met the inclusion criterion of not
having an intellectual disability.
Data Analysis
All interviews were transcribed verbatim, and Framework
Analysis was applied to the data (Ritchie and Spencer 1994;
Ritchie et al. 2003). This method involves following a
structured sequence of steps in order to systematically
identify themes within qualitative data. Framework Analysis
was chosen as it is a widely used and transparent method of
qualitative analysis that allows researchers to generate new
theory from data whilst focusing their inquiries on pre-de-
termined research objectives. We adhered to guidelines for
good practice in qualitative research (Mays and Pope 2000;
Pope et al. 2000; Stiles 1999) by conducting the following
credibility checks, to ensure that interpretations of the data
were sound and fair. First, to avoid relying upon a single
researcher’s perspective, a consensus approach (Barker and
Pistrang 2005) was employed: SB took the lead in analysis
but all three authors regularly discussed themes until,
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eventually, they derived a final set of themes and subthemes.
Second, during this process, WM audited the framework
against transcript data (Elliott et al. 1999). Finally, respon-
dent credibility checks were conducted to promote testi-
monial validity (Barker and Pistrang 2005), whereby the
framework was sent to participants for their feedback, to
ensure it reflected their experiences.
Results
Anxiety, Depression and Wellbeing in the Sample
All fourteen participants completed the HADS and GHQ-12.
The mean HADS-A (anxiety) score was 13.5 (SD 3.7, range
7–20), which lies above the recommended clinical cut-off.
All but one participant scored above the cut-off score. The
mean HADS-D (depression) score was 5.3 (SD 4.8, range
1–15), below the clinical threshold, with three participants
scoring in the clinical range. The mean GHQ-12 score was
15.4 (SD 4.4, range 9–27), below the cut-off indicating
mental disorder. Three participants scored in the ‘distress’
range and a further two fell in the ‘severe’ range, indicative
of severe psychological difficulties at the time of interview.
Qualitative Analysis: Themes and Sub-themes
Relevant data in the transcripts were organised into themes
and subthemes, with the final thematic framework
presented in Table 2. Four themes, comprising nineteen
subthemes, were identified. Quotes were labelled as ‘P’
followed by a unique identifier for each participant
(Table 1). The four major identified themes are as follows:
(1) ‘You’re not autistic’, which recognises common barri-
ers to gaining a diagnosis as a woman; (2) ‘Pretending to be
normal’ which identifies strategies that young women
employed when trying to fit in with their peers; (3) ‘Passive
to assertive’ explores how passivity and social naivety
impact on young women with ASD and how they have
learnt to be assertive; and (4) ‘Forging an identity as a
young woman with ASC’ outlines common difficulties
associated with being female with a social communication
disorder and the protective role played by special interests.
‘You’re not autistic’
This theme included reported experiences of autistic diffi-
culties being ignored and misunderstood, perceived reasons
for this, and beliefs about the implications of having
received a late diagnosis. Almost all the young women
reported having experienced one or more mental health
difficulty, with anxiety, depression and eating disorder
being the most commonly reported. Most participants
commented that health professionals treating them had not
noticed their symptoms might be related to ASC:
‘Four to five years of depression and anxiety treat-
mentyears of talking therapyand not once did
Table 2 - Framework analysis, including frequency of themes
Theme Subtheme Frequency
‘You’re not autistic’’ Labelled with non-autistic diagnoses 12
Unhelpful professional stereotypes of autism 12
Quiet at school, so went unnoticed: ‘I should have burnt more cars’ 6
Misunderstood, unsupported or blamed by teachers 8
The costs of a late diagnosis 8
Pretending to be ‘normal’ ‘Wearing a mask’ 8
Learning social behaviours from TV, books and magazines 6
Social mimicry 5
The costs of masking 5
Passive to assertive Please, appease, avoid conflict 7
Entrapment in abusive relationships or risky situations 8
Victim of sexual abuse 9
Learning to be assertive 8
Forging an identity as a woman with ASD Societal pressures: what is expected of young women 11
Friendships: uncertainty and intensity 12
Hard to be friends with neurotypical girls 8
Easier to be friends with boys 7
Friendships and support online 7
Interests define identity and self confidence 7
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anyone suggest I had anything other than depres-
sion’’. (P05)
Even when participants had begun to suspect that they
might have ASC, for example after suggestions from
friends or family members, when they approached health
professionals, their concerns were often dismissed. After
having researched ASC and decided to pursue a diagnosis
from their family doctor (in the UK called a ‘general
practitioner’ [GP]), five participants reported that their GPs
had dismissed their concerns and did not offer further
assessment. Others reported being misdiagnosed:
‘You go to your doctorand you get diagnosed with
multiple personality disorder which is completely
opposite to what you are.’’ (P07)
In contrast, there were two exceptional cases of a speedy
diagnosis: both young women had been immediately
referred for assessment after presenting to their GPs who
had recognised signs of autism in their behaviours.In most
cases, young women thought that their delay in receiving a
diagnosis was partially due to a lack of professional
knowledge of how autism presents specifically in females:
‘When I mentioned the possibility to my psychiatric
nurse she actually laughed at meI asked my mum,
who was a GP at the timeif she thought I was
autistic. She said, ‘Of course not’. At the time, a good
10 years ago now, there just wasn’t much informa-
tion about how girls presented, and from what she
knew, I was nothing of the sort.’’ (P05)
Participants also suggested that a stereotype that people
with ASC all have very severe and overt social and
communication problems added to professionals’ reluc-
tance to diagnose females who showed some capacity,
albeit superficial, to socialise with others. Young women
also felt that ‘Rain Man’ (P03) stereotypes, which incor-
rectly assume that ASC is always associated with savant
skills and with an interest in mathematics and science, had
delayed their diagnoses.
‘I’ll always remember my special needs teacher
saying I’m too poor at maths to be autistic.’’ (P04)
Teachers were the other significant professionals who
young women had experienced as having had little
knowledge of female ASC. When reflecting on their school
years, young women reported that their passive and
compliant behaviours had often been misinterpreted as
being ‘shy’ or ‘good’. Several recalled being regarded as
the ‘‘teacher’s pet’’ (P04) or the ‘model pupil’. In contrast
to their good behaviour in school, these women recalled
having had regular emotional ‘meltdowns’ at home after
school:
‘I was unbearable with my mother, but at school I
was perfect’’ (P09).
Some young women suggested that as their quiet and
passive behaviours were seen as socially acceptable for
girls, they had gone unnoticed, and proposed that had they
been more disruptive they might have been noticed sooner.
‘The reward for trying hard to be normal was to be
ignored because you were acting normal and I look at
stories online of kids who were going off the rails and
I think, I should have just burnt more cars’’ (P09)
Interview data suggested that during secondary school,
teachers’ misinterpretations of autistic girls’ behaviours
changed. A number of young women said that they had
been told they were ‘rude’ or ‘lazy’ after they had made
social faux pas, due to their misunderstanding of social
rules:
‘I was often accused of being rude when I had
absolutely no intention of being sohe [a teacher]
started saying I wasn’t trying and that I was a waste
of his time.’’ (P04)
Other poignant examples of being misunderstood came
from young women who had been bullied. Upon com-
plaining to their teachers, they recalled that they were
blamed and been told to try and ‘act more normal’.
‘When I was being bullied, I was told not to antag-
onise these girls and actually I was only antagonising
them by being myself.’’ (P03)
Most of the interviewed young women were diagnosed
between the ages of 20 and 30, and many shared how they
thought a delayed diagnosis had been detrimental to their
wellbeing and education:
‘I think women tend to be diagnosed later in life
when they actually push for it themselveswhen
you’re a child, you don’t realise that you’re anxious
and depressed[that] your education is going to
suffer because of that and I think that if I had known,
and if people had helped me from earlier on, then life
would’ve been a whole lot easier.’’ (P07)
Women also talked about their emotional reactions to
having a late diagnosis, and shared their regret and anger at
having ‘‘tried to be good’(P09) for so long, and as a result,
been missed. One young woman felt that knowing about
her diagnosis could have protected her in risky social
situations:
‘Had I known about Asperger’s, I think I’d have
known that I’m more suggestibleand I might not
have ended up in the situations that I did.’’ (P14)
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Pretending to be Normal
Interestingly, most women reported that, whilst in child-
hood teachers did not notice their difficulties, other chil-
dren were very sensitive to their differences. This theme
includes such experiences as being seen by peers as ‘dif-
ferent’ and subsequent attempts to ‘fit in’. The subthemes
describe the strategies that women learnt from various
media and other people and young women’s reflections on
the costs of pretending to be someone else.
Socialising as part of large groups was reported as
challenging by all the young women interviewed. To cope,
many described ‘wearing a mask’ or taking on a certain
‘persona’, when in specific social situations:
‘I honed something of a persona which was kind of
bubbly and vivacious, and maybe a bit dim, because I
had nothing to say other than adult novels. So I cul-
tivated an image, I suppose, that I brought out to
social situations as my partner’s girlfriend, that was
not ‘me’.’’ (P09)
Masking was also used to hide autistic traits in order to
appear ‘normal’. One woman described using her ‘mask’ as
a ‘double-bluff’ technique to openly joke about an aspect
of her behaviour that her peers might have labelled as
autistic:
‘I’ll mask if I act weird which is typical of ASC, I’ll
make a joke about it.’’ (P02)
Another woman described using alcohol as a way to ‘‘free
me up to maintain my neurotypical mask’’ (P03) in situa-
tions where she needed to pretend to be interested in
conversation topics, such as television programmes that she
did not like. Many women described actively learning how
to ‘mask’ from different media sources including charac-
ters on television, magazines, books on body language and
novels:
‘They’d have the right behaviour for certain things,
so ‘If you want this, you should do this’.’’ (P02)
Another woman learnt phrases and facial expressions from
fictional literature in order to manage more unpleasant
situations, such as bullying.
‘When I was being bullied, there’s this book by Ellen
Montgomery and the character Emily, whenever
somebody is horrible to hershe just looks at them,
and because of her expression they go away.’’ (P04)
Social mimicry was another strategy used in social
situations. However, young women reported that mimicry
was automatic and unconscious, in contrast to their willed
and conscious masking behaviours.
‘I honestly didn’t know I was doing it [social
mimicry] until I was diagnosed, but when I read
about it, it made perfect sense. I copy speech patterns
and certain body language.’’ (P05)
Some young women had noticed that they would quickly
pick up accents from other people and suggested that this
may have been an unconscious attempt to create an
increased sense of familiarity when socialising with new
people:
‘I automatically mimic what other people are doing,
what people are saying, how people say things, I went
on [Girl Guide] campsand I would come back with
strong accents. But I can’t consciously put on an
accentmy way of coping is that I mimic.’’ (P06)
Despite having acquired superficially adaptive strategies
for coping in social situations, young women also identified
some significant costs related to ‘masking’ and ‘mimick-
ing’. Many had found that the effort required to process
consciously people’s behaviours and later act them out,
was exhausting:
‘It’s very draining trying to figure out everything all
the time, everything is more like on a manual, you’ve
got to use one of those computers where you have to
type every command in.’’ (P01)
Others reported having felt confused about their identity as
a result of pretending to be someone else, indeed some had
‘acted neurotypical’’ (P07) so convincingly that at times
they had doubted whether they had ASC.
Passive to Assertive
Many participants described experiences of victimisation,
and related this to their autistic difficulties. When partici-
pants considered their experiences of victimisation, their
accounts often included narratives of passivity and
assertiveness. They described how their perceived passiv-
ity, which they linked to their ASC, had led to unhealthy
relationships and high-risk situations. One participant
described feeling the need to ‘‘please, appease and apolo-
gise - do what you’re told’’ (P03) in order to feel accepted
and receive affection. When describing her response to
unwanted requests for sex within a relationship another
said:
‘I almost feel pressured by society to do it because
you get told this is what is expected of you to make to
be a good girlfriend and you think, if I don’t do it,
then I am not fulfilling my duties (P08).’
Many participants also described going to great lengths to
avoid conflict. One woman reflected that for many years
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she had considered any form of verbal disagreement as
‘having a fight’ (P03). In other cases, women who had
previously avoided conflict talked about having over-
asserted themselves at times, resulting in lasting damage to
friendships: ‘‘When it finally comes out I can be a bit too
blunt’’ (P10). However, there were two exceptions to
women seeing themselves as being passive. One woman in
particular made it clear that she had never appeased if she
knew something was wrong.
There was a shockingly high incidence (9 of 14 partic-
ipants) of sexual abuse reported in this sample. Half of the
accounts of sexual abuse were reported to have happened
in relationships. These young women spoke about feeling
obliged or ‘‘gradually being pestered’’’ (P14) into having
sex, as something they felt was expected of them in a
girlfriend role. Another commented that arguments would
‘end up in us having sex even if I didn’t want to’’ (P11).
Three young women reported being raped by people they
did not know. In one particularly distressing case a young
woman was groomed by a peer at the bidding of three older
men. The data yielded a number of interlinked reasons as to
how young women had become entrapped in situations
where their safety and rights were compromised. First, the
role of social mimicry was considered:
‘There’s potential for you copying a guy’s flirtatious
behaviour without realising that’s what you’re doing
(P05).’
Second, many women reported finding it difficult to ‘read’
other people’s intentions, and so struggled to understand if
a man was just being friendly or was sexually attracted to
them. Third, in contrast to their neurotypical female peers
who could share skills to keep themselves safe, young
women with ASC reported feeling isolated as teenagers
and so lacking a point of reference from which to develop
strategies for staying safe. Fourth, some women reported
that their experiences of peer rejection left them ‘desperate’
for acceptance, which in turn made them more vulnerable
to exploitation:
‘Because we don’t sense danger and can’t. That’s
one reason, I think you not reading people to be able
to tell if they’re being creepy, you’re that desperate
for friends and relationships that if someone is
showing an interest in you, you kind of go with it and
tend not to learn from others’ safety skills.’’ (P07)
Fifth, young women’s uncertainty regarding social rules
was also mentioned as contributing to risk of abuse. For
example, some had not known that they could say ‘no’
when they had wanted to refuse sex or other people’s
advances. At times when they had known they could
refuse, young women reported that they had not known
how to say ‘no’ or how to leave a situation until it was too
late. Others talked about being trapped in unhealthy
relationships:
‘I kept trying to break up with him and whenever I
did he would say I didn’t know my own feelingsI
was at my wit’s end I felt so trapped (P04).’’
Despite narratives of passivity and accounts of abuse, a
number of women also talked about an increase over time
in their ability to be assertive. Young women who had
reported difficult interpersonal experiences were able to
later reflect on and describe how they had been manipu-
lated. As a result, many described having learnt to read
others’ intentions better and used this knowledge to leave
situations where they felt uncomfortable: ‘‘[there were]
times when guys pushed for it, so I just walked away’’
(P05). Other women used skills they had actively learnt,
such as ‘‘a guide to being assertive’’ (P02) provided by a
counsellor and skills learnt in their jobs.
Four women explained how they had used their diag-
nosis of Asperger’s as a tool to give them more confidence
asserting their opinion. Women commented that before
having a diagnosis they would have ‘‘just kept quiet’’ (P10)
but now they were able to ask people for clarification or
explanations when they were unsure of a situation. One
participant who had previously used her diagnosis as a
means of explaining difficulties, now no longer felt obliged
to provide an explanation and felt confident enough to
simply say ‘no’.
Forging an Identity as a Woman with ASD
The final theme concerns young women’s perceptions of
social gender stereotypes that they had felt pressured to,
struggled to, and at times, refused to fulfil. Related to this,
their experiences of navigating and negotiating friendships
are also explored.
Young women’s opinions varied regarding gender-
stereotypical roles. Whilst some openly rejected gender-
based theories of behaviour: ‘‘[I don’t] really accept the
validity of gender stereotypes’’ (P04) or ‘status quo’
behaviours, for example, dating someone their own age:
‘He’s 50, err so what, such conventions never bothered me
before’’ (P07), other women were more tentative. Indeed,
some young women described having tried to fulfil socially
expected roles: ‘‘caring, nurturing, ‘looking out for every-
one’, kind of role’’ (P08), and many had experienced a
sense of lost identity, where they felt ‘‘I knew that I wasn’t
being me’’ (P10) when trying to play ‘the wife’ or
‘girlfriend’.
Young women discussed how ASC affected their ability
to form friendships. One difficulty raised by three women
was ‘defining a friend’. All three had to think consciously
of situations in order to decipher if someone was a friend:
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‘this person sort of dealt with this and was still my
friend afterwards, [so] they must be good friends
(P11)’
Another challenge young women experienced was not
knowing how to navigate the nuances of friendly
interactions:
‘Not knowing what was expected of me, not being
able to pick up on when to provide support or how
often to get in touch (P09).’
When reflecting on previous school friendships, a number
of young women commented that the main areas of conflict
had often been related to wanting the exclusive attention of
a particular (and often, only) friend.
‘A lot of my problems came about with them having
other friends that I didn’t like or I didn’t get on
withI didn’t really want to share them.’’ (P10)
Young women also reflected on people who they found it
easier, and more difficult, to be friends with. Eight
participants reflected on their experiences of trying to
form friendships with neurotypical women and had often
found it hard to manage what they perceived were socially
expected skills of a woman. During teenage years, many of
their female peers were noticeably more sophisticated in
their social abilities: ‘‘girlssocially are a lot quicker’
(P02). The young women had also found gossip and
competition amongst females difficult to navigate.
‘The gossipin women that can be quite hardif
they’re talking about someone sometimes it’s hard to
know whether they are[being] meanyou know
you worry that if you say the wrong thing with other
women that you’re going to be talked about behind
your back.’’ (P10)
One woman commented that at times, girls would notice
someone who was vulnerable and ‘‘they’ll generally put
her down’’ (P02). Another remembered feeling intimidated
by neurotypical teenage girls and had experienced rejection
for being seen as ‘‘one iota different from them’’. (P03). In
contrast, a number of young women said they felt more at
ease in their friendships with males. This was not thought
to be related to biological sex, but to society ‘allowing’
men to be more straightforward, and this being a commu-
nication style that suited women with ASC better:
‘I just feel so much more comfortable with men
because they’re more, you can take them at face
value and its not that fear of them judging you or
having alternative motives and thoughts and they
kind of say things straight.’’ (P07)
Several women spoke of the importance of friendships that
they had made or maintained using online media. Friend-
ships with other ‘Aspie’ women from online forums were
particularly important. One woman described her friends as
a: ‘‘gang of fellow Aspie women who I think of as my
family’’ (P10). Some had found that their visits to online
forums had increased their pride and confidence in having a
diagnosis:
‘It’s a difference not a disorderit was really helpful
because it made me feel good about myself (P02).’’
Other women used blogs as a way of hearing other
women’s stories and sharing their own, and as a result felt
accepted and understood by others who have been through
similar experiences.
‘Something that I really appreciate about having the
diagnosis is actually being in this club now where
people talk about their experiences and having so
many echoes of my own.’’ (P03)
The use of an online platform had made communication
easier for some young women. For example, in normal
face-to-face communication, one would be expected to
‘read’ body language, tone of voice and facial expression,
so ‘‘If all we have is typing for each other, then it’s
completely equal’’ (P10). Women talked about being able
to express themselves more clearly when they didn’t have
the pressure and anxiety to respond immediately, as with a
face-to-face conversation. Further, use of messaging was
also an easier and less awkward medium to express
difficult emotions and access support from their friends.
Despite the previously mentioned challenges with estab-
lishing friendships, it is notable that most of the young
women had a small number of consistent friends from
school or university. Finally, young women’s interests
appeared to be a defining feature of their identities and an
important part of their raison d’etre. Indeed, for those
whose interest was their full-time occupation it defined
them as people, gave them a focus in life and provided a
sense of personal well-being:
‘I was very obsessed, and still am, with creative
writing and that kind of provides the entire focus of
my lifeI would say I forge most of my identity on
that and the degreethey allow me to express myself
in different ways, they form the basis of my identity.’
(P09)
Reported interests varied enormously, from animals to
international boat racing, from sexuality, physics and The
Middle East to autism and events organising and provided
them with structure and a sense of achievement:
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‘It’s very goodfor my self-belief, to see that that I
can do something that’s recognised by other people as
beneficial and productive (P04).’
Therefore, instead of relying on common social norms,
such as sociability or motherhood, to define themselves,
young women formed their identities through their special
interests.
Discussion
We interviewed 14 women with ASC who had received
their diagnosis in late adolescence or early adulthood, in
order to learn more about the female autism phenotype and
how it impacts upon the recognition of ASC. We took an
inductive (i.e., data-driven), qualitative approach in order
to generate new ideas and to deepen understanding of
existing concepts. Our aim is that this work will contribute
to future quantitative investigations of the female autism
phenotype by generating novel hypotheses and informing
the development of appropriate measures.
One element of the female autism phenotype that is
elucidated by our analyses is the phenomenon of ‘camou-
flaging’, or ‘pretending to be normal’ (Holliday-Willey
2014). Efforts to camouflage were widespread but not
universal in this sample. Participants spoke of making a
deliberate effort to learn and use ‘neurotypical’ social
skills, sometimes describing this as ‘putting on a mask’
(Baldwin and Costley 2015; Cridland et al. 2014). Our
analyses suggest that the development of such neurotypical
personas may rely on concerted and prolonged autodidac-
ticism based on, for example, careful observation of peers,
reading novels and psychology books, imitating fictional
characters, and trial and error learning in social situations.
In addition, we also identified unconscious elements to
camouflaging that warrant further investigation, whereby
women reported their social behaviour being copied from
others around them without even realising they were
mimicking in this way.
Another observation about camouflaging is that it was
reported to be associated with various disadvantages. These
included a sense of exhaustion and confusion about the
individual’s true identity. Furthermore, as is discussed
below, some women believed that a tendency to mimic
others and prioritise fitting in above their own needs had
led them to be manipulated and abused by others; and had
caused others not to notice their needs for help. The current
analyses do not in any sense provide a definitive picture of
camouflaging. Rather, we intend that the account of cam-
ouflaging given in the present paper, and other research
reports of the phenomenon (e.g., Baldwin and Costley
2015; Cridland et al. 2014), be used to derive a precise and
coherent conceptualisation of this construct, including both
its conscious and unconscious elements. This operational-
ization of camouflaging can then form the basis for the
design of a measure which can be used in quantitative
investigations to address questions such as: ‘how wide-
spread is camouflaging amongst people with ASC?’; ‘are
there age and gender differences in camouflaging?’; ‘what
are the costs and benefits of camouflaging?; ‘what could
educational establishments and workplaces do to minimise
the camouflaging that people with ASC have to do?’. We
believe that this camouflaging measure, at least initially,
should rely on self-report, as by its very nature, camou-
flaging behaviour is often not obvious to observers.
Our data suggest that some of the challenges of being a
female with ASC do not come directly from the individual’s
autistic difficulties; but rather reflect how these difficulties
play out within a culture that has specific expectations for
females. Some women in the sample reported a conflict
between their desire to accept their autistic selves, and
perceived pressures to fulfil traditional gender roles. For
example, participants described feeling pressure to play
certain traditional feminine roles (the wife, the mother, the
girlfriend), and finding this incompatible with how they
wanted to live as a person with ASC. Further, in line with
findings for adolescent girls with ASC (Cridland et al. 2014),
several women in our sample reported that their autistic
social communication difficulties made it difficult for them
to join and enjoy female peer groups, which they perceived
as being more subtle and less forgiving of faux pas than male
social groups. There is emerging evidence that having ASC
increases a person’s chances of not identifying with their
assigned-at-birth gender (Strang et al. 2014), or of rejecting
a binary gender identity (Kristensen and Broome 2015).
Although no one in the current study reported being at odds
with their gender as assigned at birth, our finding that some
women experience a conflict between a feminine and autistic
identity suggests one potential influence on the elevated
rates of gender dysphoria and non-binary gender amongst
natal females with ASC.
As discussed above, ASC in females is more likely to be
identified late, to be mis-labelled or not to be recognised at
all. Based on our investigation of the experiences of
females whose ASC went unidentified in childhood and
early/mid adolescence, we hypothesise that this phe-
nomenon reflects both: (1) specific features of the female
autism phenotype; and (2) characteristics of the systems
that are designed to identify and help people with ASC.
Reflecting this, we propose a model of the bias against
recognising female ASC, for testing in future quantitative,
deductive (i.e. theory-driven) studies. In terms of individ-
ual characteristics, we suggest that females who are espe-
cially invested in and skilled at camouflaging are at greater
risk of their ASC going undetected (see also Baldwin and
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Costley 2015). Further, we hypothesise that the female
tendency to have internalising (e.g., anxiety, depression)
but not externalising (e.g., hyperactivity/impulsivity, con-
duct problems) difficulties is also a risk factor for non-
detection of ASC, first because children with these prob-
lems tend not to be disruptive at school as so are less likely
to be referred by teachers for clinical help, and, second,
because internalising difficulties sometimes over-shadow
an underlying ASC diagnosis. In addition we propose that
greater social motivation (Sedgewick et al. 2015) and
better non-verbal communication (Rynkiewicz et al. 2016),
both characteristics of the female autism phenotype, should
be investigated as factors that can lead professionals to rule
out ASC as a possible diagnosis when a females with
autistic difficulties presents for assessment.
We also propose that the knowledge and assumptions of
teachers, GPs, mental healthcare workers and other pro-
fessionals contribute to the diagnostic bias against females
with ASC. Participants reported that some professionals
showed biases that females could not have ASC, and/or had
conceptions of ASC that did not encompass more subtle,
female-typical presentations. Inevitably, such biases seem
to have been especially common amongst those who are
not specialist in assessing neurodevelopmental disorders,
but who are nevertheless influential gate-keepers to rele-
vant services for people with ASC, such as teachers
(Baldwin and Costley 2015; Cridland et al. 2014) and GPs
(family doctors).
Our findings also highlight the costs of the bias against
female ASC diagnosis. In line with studies of adults with
ASC (see Howlin and Moss 2012), internalising difficul-
ties were common amongst participants. All but one
reported clinically severe anxiety, and levels of distress
were elevated, emphasising the importance of identifying
women with ASC in order to provide support, including
for co-occurring emotional difficulties. Most participants
(8 of 14) explicitly stated that their lives would have been
easier had they received their diagnosis earlier in life.
Pre-diagnosis, they recalled being misunderstood, with
their autistic difficulties often labelled in very negative
terms by peers and adults, for example as laziness or
wilful defiance. In line with findings for mixed-gender
samples of adults with ASC (e.g., Hurlbutt and Chalmers
2002) most participants had experienced the eventual
receipt of their diagnosis as helpful. Some stated that it
had fostered a sense of belonging in a group of like-
minded people, and that this had promoted a more posi-
tive sense of self. The Internet and social media appear to
be especially important for enabling the existence of such
communities. Thus, our findings suggest that another cost
of missed diagnosis is that it denies people with ASC the
opportunity to benefit from identifying with the autism
community.
To our knowledge, this is the first study to specifically
investigate the experiences of late-diagnosed females with
ASC, and we believe that our inductive, in-depth approach
has generated some new insights into the female autism
phenotype and its impact upon risk of missed diagnosis.
Nevertheless, it is important to think critically about the
nature of the sample we recruited and how this affects the
transferability of our findings to females with ASC beyond
the study sample (Barker and Pistrang 2015). First,
although our sample experienced significant mental health
difficulties, especially anxiety, that are in line with
expectations for the general population of adults with ASC
they are notably ‘high-functioning’, in the sense that they
mostly had above-average IQs and a greater proportion
were in work or education than is commonly reported for
adults with ASC (Howlin and Moss 2012). Therefore it will
be important in future to investigate experiences of women
across the full range of severity of the autism spectrum.
Second, this investigation took place in the UK. It is likely
that the impact of the female phenotype on risk of being
missed will be different in other countries with different
healthcare systems, and this should be investigated. Third,
our focus on late-diagnosed females made us less likely to
uncover ‘success stories’ in terms of timely recognition and
support. In future, the study of girls with ASC who were
recognised in early childhood could be useful for providing
pointers towards good clinical and educational practice in
this area, and could generate different ideas about the
female phenotype to those of the current study. Fourth,
older women and those diagnosed even later than those in
the current study may have distinct experiences and needs,
and this warrants direct investigation.
Our focus exclusively on females and use of qualitative
methodology meant that we have not made direct com-
parisons between males and females. It is possible that
some of our findings are not specific to females, and also
apply to males with ASC, especially those who have
average and above intelligence, fluent speech and who
received their diagnosis late. The current research can
provide a foundation for future quantitative investigations
which make formal gender comparisons, to learn the extent
to which males with ASC camouflage, are vulnerable to
sexual exploitation, are liable to have their difficulties
missed by professionals, and find their autistic character-
istics clash with their attempts to conform to gender norms.
Furthermore, the testing of ideas generated by the current
study in representative samples of females with ASC will
serve to formally address uncertainties about their trans-
ferability, described above.
The current study has sought to generate hypotheses
about the presentation and challenges faced by women who
meet diagnostic criteria for ASC, but who were not picked
up in childhood. It should be noted that there is another
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group of females who have severe autistic-like difficulties
(i.e., difficulties with social reciprocity, social communi-
cation, flexibility and sensory processing), but who do not
actually meet diagnostic criteria for ASC (Dworzynski
et al. 2012). It is unclear whether such individuals should
be included in studies of the female autism phenotype. One
argument is that, because they do not qualify for a diag-
nosis, they cannot be considered representative of females
with ASC. The contrary position is that they really do have
ASC, but fail to meet criteria because current diagnostic
criteria are insensitive to their more female-typical pre-
sentation. Currently we lack clinically applicable
biomarkers for ASC (Mandy and Lai 2016), so there is no
definitive way to resolve the question of whether women
with autistic-like difficulties who do not meet ASC criteria
exemplify the female autism phenotype, or are actually
experiencing a non-autistic condition. Nevertheless, the
study of such individuals will be informative about whether
their difficulties are appropriately captured by the ASC
label. Such work should address: (1) whether, despite not
meeting specific diagnostic criteria, their social, sensory
and flexibility difficulties fall within the broad conceptual
domains of ASC (Lai et al. 2015); (2) whether their asso-
ciated impairments are clinically severe; and (3) whether
the pattern of their associated impairments is comparable to
that seen in females who do meet ASC diagnostic criteria.
It will also be instructive to take a longitudinal approach, to
investigate whether some females experience later onset of
clinically-severe autistic difficulties, failing to meet diag-
nostic criteria as children but then going on to qualify for
an ASC diagnosis in adolescence or adulthood.
Conclusions
In their account summarizing the priorities of autism
research based on interviews with people with ASC, (Pel-
licano et al. 2014) stressed the need to understand why
women with ASC ‘slip through the net’ and to identify
ways to counter this gender-based inequity in current
clinical practice. Our findings suggest that the attainment
of these goals will require several courses of action. First,
research to define the female autism phenotype must
include the development of measures of camouflaging, so
that this phenomenon can be studied quantitatively,
increasing understanding of its prevalence and effects on
diagnosis and wellbeing. Second, levels of knowledge
about ASC and training needs of a range of healthcare and
educational professionals, including those who do not
specialize in ASC, should be investigated. This would lay
the ground for the development of training programs about
the female autism phenotype, to improve recognition and
referral to appropriate services. Finally, our finding, which
is echoed elsewhere in the scientific (Cridland et al. 2014)
and autobiographical literature, that having ASC increases
the risk for females of being sexually abused, requires
immediate attention (e.g., Steward 2014). More research is
needed to test the ideas suggested by our participants about
why they were vulnerable to exploitation; and this should
inform specific training programmes for females with ASC,
to help them stay safe.
Acknowledgments The authors would like to thank the women who
participated in this research, who shared their times and ideas with
such generosity. We also thank Prof Nancy Pistrang and Prof Chris
Barker for their advice.
Compliance with ethical standards
Conflict of interest Sarah Bargiela, Robyn Steward and William
Mandy all declare that they have no relevant conflicts of interest.
Ethical approval All procedures performed in studies involving
human participants were in accordance with the ethical standards of
the institutional and/or national research committee and with the 1964
Helsinki declaration and its later amendments or comparable ethical
standards.
Open Access This article is distributed under the terms of the
Creative Commons Attribution 4.0 International License (http://crea
tivecommons.org/licenses/by/4.0/), which permits unrestricted use,
distribution, and reproduction in any medium, provided you give
appropriate credit to the original author(s) and the source, provide a
link to the Creative Commons license, and indicate if changes were
made.
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... Furthermore, the gender stereotypes held by parents, teachers, and even clinicians can often complicate the assessment of ASD in females. Many young women with ASD report that when they were children, their parents and clinicians ignored the possibility of them having ASD because of their gender, which led to later ages of diagnosis and an identity conflict between their ASD and femininity (Bargiela et al., 2016). This gender disparity can be seen in the DSM-5 diagnostic criteria for ASD; while ASD often presents differently in females than in males, the diagnostic criteria are heavily oriented to a masculine presentation of the disorder and only specifies the ways in which the disorder may present differently in females in a brief note. ...
... This gender disparity can be seen in the DSM-5 diagnostic criteria for ASD; while ASD often presents differently in females than in males, the diagnostic criteria are heavily oriented to a masculine presentation of the disorder and only specifies the ways in which the disorder may present differently in females in a brief note. This lack of specificity in distinguishing between gender-specific symptom presentations can further complicate the assessment of ASD (American Psychiatric Association, 2013; Bargiela et al., 2016;Giarelli et al., 2010). ...
... As well, further research and updates to the diagnostic criteria and assessment guidelines for ASD should be made to better represent females with ASD and to expand upon the current understanding of how their presentation differs from that of males with ASD. This would help to reduce the number of young girls whose presentation is excluded by the current diagnostic criteria for ASD, which may lead to earlier diagnosis and more positive treatment outcomes (Bargiela et al., 2016). Finally, the assessment tools for children with co-occurring ASD and ADHD must be updated, as presently the diagnostic tools for ADHD do not include any measures or adaptations for assessing children with comorbid ASD (Cortese, 2016). ...
Article
In this literature review, the authors provide an overview of the research on factors related to re-entry or nontraditional women students’ persistence in doctoral programs in counselling and clinical psychology. Re-entry women have a unique set of challenges beyond the challenges that regular graduate students face (e.g., role conflict, work commitments, and doubts related to abilities; Thomas, 2010). Furthermore, clinical and counselling psychology programs require practical training in addition to the classes and research required for traditional doctorates. As a result of these additional stressors, re-entry women students are at a higher risk of dropping out (Gittings et al., 2018). The purpose of this literature review is to provide an updated synthesis of the research findings to date focusing on resiliency factors for re-entry women.
... Autistic adults are reported to experience increased rates of co-morbid mental health difficulties (Ghaziuddin & Zafar, 2008;King & Murphy, 2014;Lin & Huang, 2017). In addition, women diagnosed with autism in adulthood also report experiences of bullying and sexual victimisation (Bargiela et al., 2016;Kanfiszer et al., 2017). ...
... Receiving a formal diagnosis is described as a di cult, potentially life changing experience. e importance of the post-diagnostic period for those receiving an autism diagnosis has been well documented (Bargiela et al., 2016;Huang et al., 2020;Jones et al., 2014;Lewis, 2016a;Powell & Acker, 2016) and this should be seen as a key time for support and intervention. Connecting with a peer community provides opportunity to establish new relationships and improve previous ones which can establish a sense of belonging and acceptance a er a lifetime of feeling di erent from others Lewis, 2017;Punshon et al., 2009). ...
... Access to post-diagnostic support can be bene cial for anyone receiving a diagnosis of autism in adulthood, as it supports the process of coming to terms with the diagnosis and integrating it into one's existing sense of self, as well as reducing mental health di culties and improving quality of life (Jones et al., 2014). Many people bene t from formal support with this process Crane et al., 2018;Stagg & Belcher, 2019), whilst others may benet from access to peer networks (Bargiela et al., 2016). Post-diagnostic support services are currently scarce in the UK and many autistic adults lack access to them Jones et al., 2014). ...
... The late-diagnosed women reflected that camouflaging pre-diagnosis may have contributed to unrecognised and unmet needs (Leedham et al., 2020). This was also found by Bargiela et al. (2016) who spoke to 14 autistic women and found that these women, who had all received a diagnosis in late adolescence or adulthood, reported camouflaging their autistic behaviours, which was implicated in poor recognition of their need for help. Similar findings were reported by Hull et al. (2017), who interviewed 55 autistic females, 30 autistic males and 7 autistic people who identified as a different gender. ...
... There is evidence to suggest that camouflaging behaviour is associated with increased self-reported stress and anxiety (Cage & Troxell-Whitman, 2019;Hull et al., 2017). Camouflaging behaviour has also been linked to increased exhaustion for those engaging in this often-effortful strategy (Bargiela et al., 2016). Bargiela et al.'s (2016) qualitative examination also found that some individuals who adopted camouflaging techniques felt a loss of their sense of identity. ...
... Camouflaging behaviour has also been linked to increased exhaustion for those engaging in this often-effortful strategy (Bargiela et al., 2016). Bargiela et al.'s (2016) qualitative examination also found that some individuals who adopted camouflaging techniques felt a loss of their sense of identity. Comparisons of autistic males and females have been mixed, with some studies reporting greater negative consequences for females and others suggesting similar levels of negative consequences regardless of sex (Cage & Troxell-Whitman, 2019;Hull et al., 2019). ...
Article
Full-text available
Lay abstract: Many autistic people use strategies that help them adapt in social situations and hide behaviours that may seem different to non-autistic individuals - this is called camouflaging. Camouflaging may help autistic people fit in socially; however, it might also lead to poorer well-being. It has been suggested that autistic females camouflage more than autistic males. This article explored differences between males and females who have an autism diagnosis, have characteristics of autism but no diagnosis and those with few autistic characteristics. It is important to include these groups as camouflaging may make it more difficult to get an autism diagnosis and therefore make it less likely a person will receive support. We found that autistic women camouflaged more than all other groups. The group with few autistic characteristics (males and females) camouflaged the least. Loneliness was found to be a possible reason for camouflaging for the diagnosed autistic group only. In terms of outcomes related to camouflaging, it was found that those who camouflaged most had a lower quality of life; this was true of all groups. This tells us that there may be different reasons to camouflage, and different outcomes related to camouflaging for those with many characteristics of autism (including those with a diagnosis), and those with few. It is important that clinicians, teachers, parents and other stakeholders are aware of the negative outcomes associated with camouflaging so that more support can be provided for those who need it.
... O reforçamento diferencial de comportamentos distintos nos homens e mulheres, isto é, o endosso aos estereótipos de gênero, é uma das hipóteses para uma possível apresentação diferenciada das características de TEA em homens e mulheres (e.g., Milner et al., 2019). De fato, pesquisas têm demonstrado que é comum que mulheres com TEA camuflem suas dificuldades e apresentem interesses restritos em atividades que não são consideradas discrepantes com o que é esperado pelos estereótipos de gênero, como em cavalos (e.g., Bargiela et al., 2016). ...
... Além disso, há evidências de que, para atingir os critérios estabelecidos no DSM ou na Classificação Internacional de Doenças (CID), as mulheres precisam apresentar maior severidade nos sintomas de TEA e/ou maiores dificuldades cognitivas ou comportamentais, em comparação com homens (e.g., Bargiela et al., 2016). Não obstante, um dos maiores estudos sobre discrepância de diagnóstico do autismo em homens e mulheres (Frazier et al., 2014) aponta que as mulheres tendem a ter menores níveis de interesses restritos. ...
... 2) Pesquisas que investiguem o que controla a maior vulnerabilidade à violência na população autista, em especial, a vulnerabilidade a violência sexual em mulheres autistas: para ampliar o escopo da ABA no atendimento de adultos e mulheres autistas, é necessário que tenhamos estudos básicos/experimentais, que produzam dados a serem, no futuro, aplicados nessa e outras questões. No estudo de Bargiela et al. (2016), por exemplo, diversas participantes (mulheres autistas) relataram situações de violência sexual. Nesse sentido, poderiam ser investigados, por exemplo, o impacto do seguimento de regras na incidência de violência sexual (e.g., aprender que para namorar, é preciso fazer tudo o que o namorado deseja) e possíveis relações entre alguns déficits na comunicação e interação social -e.g., dificuldade em entender sarcasmo e ironia -na inserção e manutenção de relacionamentos abusivos, sejam eles românticos ou não. ...
Article
Full-text available
Uma das formas de tratamento baseada em evidências para pessoas autistas é a Análise do Comportamento Aplicada (ABA), reconhecida pela sua eficácia e validade científica. Entretanto, muitas pesquisas em ABA têm se focado em intervenções com crianças. Assim, o objetivo deste trabalho é realizar um ensaio problematizando o baixo número de estudos com adultos e mulheres autistas, com foco na realidade brasileira, além da tendência de não incluir os próprios autistas nas decisões de pesquisa e intervenção. Constatou-se que, de fato, a quantidade de estudos em ABA com mulheres e adultos é escassa. Também se evidenciou que a população autista não tem sido consultada no planejamento e avaliação de pesquisas e intervenções. Sugere-se, entre outras coisas, a proposição de estudos sobre clínica analítico-comportamental no atendimento de mulheres e adultos autistas e a inclusão de autistas na escolha dos temas de pesquisa, assim como na definição de metas e na avaliação da eficácia das intervenções. Por fim, sugerimos também que a ética se torne um aspecto central nos cursos e discussões sobre a ABA ao autismo.
... Reasons for this gender discrepancy in early diagnosis include lack of recognition of ASC traits in girls due to the historical male-focus of research. Androcentric research findings have influenced the development of the ASC construct, diagnostic tools, and the preconceptions of health professionals, including psychologists, who report unfamiliarity with female ASC presentations and are dismissive of women who present with ASC traits (Bargiela et al., 2016;Zener, 2019). For women, the timing of diagnosis may have significant consequences. ...
... Autistic girls report being chastised for misunderstanding social rules, committing social faux pas, or being outspoken. This negative response reinforces their need or desire to mask (Bargiela et al., 2016;Seers & Hogg, 2021). Other, more gender-conforming ASC traits such as shyness or restricted interests in books or animals are commonly overlooked by teachers and parents (Dean et al., 2017;Ratto et al., 2017). ...
... When autistic girls believe they are to blame for their "difficult" or "abnormal" behaviours, their self-worth and efficacy are likely to be reduced and such beliefs may result in mental health issues (Bargiela et al., 2016;Cridland et al., 2014). Without appropriate diagnosis and self-understanding, experiences of relationships can be complex, confusing, and potentially abusive (Baldwin & Costley, 2015;Cridland et al., 2014). ...
Article
Full-text available
The diagnosis of autism spectrum condition (ASC) in women is increasing, prompting research into the gendered experience and presentation of female ASC. To complement this growing body of research, the current study utilised a qualitative approach informed by a feminist disability framework to explore how the intersecting dimensions of difference, gender, and ASC influence autistic women’s subjectivity and wellbeing. Drawing on the experiences of eight late-diagnosed autistic women, thematic analysis highlighted experiences of early marginalisation, challenges of living outside gendered social norms, the psychological and emotional consequences of masking, and the impact of diagnosis on subjectivity, identity, and wellbeing. Participants developed their authenticity and personhood within a performative social context that required masking of the self, a complex process with wide-ranging consequences. Findings also highlight the importance of acceptance, representation, and community for the wellbeing of autistic women. This research challenges the dominant, masculinised construction of ASC. It highlights the need for the ontological status of ASC to be reconceptualised to incorporate diverse experiences of the condition across the gender spectrum. Future research should explore how psychology can facilitate this reconceptualisation.
... to explain this inversion could be the ability to "camouflage" (a learned adaptation, by imitation of behaviours expected in relational terms or in society), which is more frequently deployed and more efficient in girls with a good intellectual level in the primary school period, but which is overtaken by expectations from society and by relational issues during adolescence [10,11,39]. This hypothesis could also explain Knutsen's results [34], which only showed a significant difference for girls under 6 years with an IQ ≥ 70 and 6-to 12-year-old girls with an IQ < 70 (the ability to camouflage for 6-to 12-year-old girls with IQ > 70 becomes insufficient, less efficient and IR increases in adolescence). ...
... This neologism was invented by Liane Holliday Willey, doctor in education and researcher, and diagnosed with the illness in 1999. Patients can also take part in research by sharing their experience in qualitative research [11] (website: http:// autis minpi nk. net), and write books and blogs to share their story with others. ...
Article
Full-text available
The existence of a female phenotype profile in autistic spectrum disorder is one of the current hypotheses to explain the diagnostic discrepancy between men and women. In this context, an international literature review was carried out to evidence and describe the characteristics of restricted interests found in girls with autistic spectrum disorder. A documentary search was conducted on PubMed and a systematic literature review was carried out based on the PRISMA methodology. We selected studies with a population of boys and girls diagnosed as autistic according to the DSM-IV or the DSM-5, in which quantitative and descriptive comparisons of restricted interests, according to gender were carried out. Nineteen studies were found to be relevant. Fifteen enabled a refining of the characteristics of restricted interests among females: fewer restricted interests were identified in comparison with boys, and the autistic girls’ interests seem to be closer to those of neurotypical girls than to those of autistic boys, which thus led to more complex screening. Age and Intelligence quotient seem to be two factors that trigger variations in restricted interests differently according to gender. Representations among professionals also have an impact on diagnoses among girls. For future research, one of the perspectives could be a comparison between girls with autism and neurotypical girls to limit gender bias. The present results contribute to potentially extending knowledge of a female phenotypical profile in autism and show the need to improve the general population’s awareness, to improve health professionals’ training and possibly to revise the diagnostic tools.
... Females may be more likely to be diagnosed with autism in adulthood (Kirby et al., 2019) or may not receive a formal autism diagnosis (Lai et al., 2015). Females may also be at greater risk of traumatic experiences, including sexual abuse (Kirby et al., 2019), and could experience identity conflict (Bargiela et al., 2016;Cassidy et al., 2018). Concealing autistic traits ("camouflaging") is more common in autistic females and has been reported to account for 3.5% of the variance in suicidal behaviour (Cassidy et al., 2018). ...
Chapter
Full-text available
People who are diagnosed with Autism Spectrum Disorder (ASD) are at increased risk of suicidal behaviour compared to the general population; recent population-based studies demonstrate a three- to sevenfold increased risk of premature death by suicide. This chapter provides an overview of: (a) the current literature regarding risk and prevalence of suicide behaviour in autism; (b) the role of intellectual disability/intellectual developmental disorder in suicide in autism; (c) correlates, risk and protective factors; (d) dimensional constructs of suicide, including autistic traits; (e) current approaches to suicide assessment, including potential modifications; and (f) suicide prevention and service access. We consider these topics by drawing on state-of-the-art research, the perspective of lived experience, and consideration of the potential impacts of major events such as the coronavirus (COVID-19) pandemic.
... Variability in diagnostic age for ASD is evident, with children being diagnosed predominantly in the preschool years. Children may receive an early diagnosis, prior to the preschool years, as young as 2 years (Guthrie et al., 2013;Lord et al., 2006;Pierce et al., 2019;Wetherby et al., 2004), a later diagnosis at 6 or 7 years old (Mandell et al., 2005;Shattuck et al., 2009), or even in their adolescent years (Bargiela et al., 2016;Happé et al., 2016). Although the age of diagnosis varies across families of children with ASD, having a single consistent and valid social communication classification tool for children across the age range would enable families to utilize a common language with professionals (e.g., clinicians, therapists, teachers, etc.) who provide services for their children throughout the childhood years. ...
Article
Full-text available
The Autism Classification System of Functioning: Social Communication (ACSF) describes social communication functioning levels. First developed for preschoolers with ASD, this study tests an expanded age range (2-to-18 years). The ACFS rates the child’s typical and best (i.e., capacity) performance. Qualitative methods tested parent and clinician perspectives of the ACSF age expansion using content analysis. The ACSF was used twice by parents and professionals for the same child/youth. Reliabilities were assessed using weighted kappa. Content validity supported the ACSF’s applicability, clarity, and usability. The ACSF adaptations did not change its original construct. Reliability were calculated from 90 parent and professional Time-1 and Time-2 ratings for children/youth (2.1–15.6 years). Results showed good-to-very good intra-rater agreement (typical) and good inter-rater agreement (capacity).
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