687987

research-article2017
AUT0010.1177/1362361316687987AutismKanfiszer et al.

Special Issue Article

Autism

‘I was just so different’: The experiences 2017, Vol. 21(6) 661­–669

© The Author(s) 2017
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DOI: 10.1177/1362361316687987
https://doi.org/10.1177/1362361316687987

spectrum disorder in adulthood in relation journals.sagepub.com/home/aut

to gender and social relationships

Lucie Kanfiszer1,2, Fran Davies1 and Suzanne Collins1

Abstract
Existing literature exploring autism spectrum disorders within female populations predominantly utilises quantitative
methodology. A limited number of small-scale, qualitative studies have explored the experiences of adolescent girls with
autism spectrum disorder, but adult women have remained largely unheard. This study aims to broaden the stories told
within autobiographical literature and empower those within the wider community of women with autism spectrum
disorder. In doing so, it seeks to extend existing conceptualisations of experience to include socially and culturally
located factors. A qualitative methodology was adopted, utilising multi-stage narrative analysis. Seven semi-structured
interviews with women who received a diagnosis in adulthood were conducted. Recruitment spanned community mental
health services, an inpatient service and a community support group. From the women’s diverse experiences and stories
emerged two broad categories related to gender identity and social relationships. The findings are discussed in relation
to existing constructs of autism in women.

Keywords
autism spectrum disorders, qualitative research, social behaviour, social cognition

Introduction
Science has been privileged in defining autism and conse- However, the research with children with autism spectrum
quent human difference, rather than the culture and society disorder (ASD) has produced variable results. Studies uti-
within which norms exist (Smukler, 2005). Nadeson lising samples matched on chronological age and receptive
(2005) questions the extent to which cultural representa- language functioning have not identified sex differences in
tions of normalcy change over time and thus how a ‘true’ ASD symptomology, cognitive or perceptual functioning
representation of autism can be obtained. in groups diagnosed with autism and an intellectual disa-
When consulted on their priorities for autism research, bility (Pilowsky et al., 1998; Tsai and Biesler, 1983) or
members of a UK autism community unanimously identi- those with higher-functioning autism and no intellectual
fied a bias within the literature towards children and disability (Holtman et al., 2007).
‘neurotypical priorities’ that focused, for example, on Inconsistent findings suggest that sex differences may
unearthing underlying causes, rather than life experiences, vary throughout childhood and be constrained by age;
thus failing to improve them (Pellicano et al., 2014).Within
the context of poor outcomes for many adults with autism
1University
of Essex, UK
(Howlin et al., 2004, 2013), it is unsurprising that this 2GreatOrmond Street Hospital for Children NHS Foundation
community has requested research that improves their Trust, UK
quality of life and our understanding of their needs.
Debate surrounding whether autism is less detectable in Corresponding author:
Lucie Kanfiszer, Psychological Services, Great Ormond Street Hospital
female populations because it affects them less, or differ- for Children NHS Foundation Trust, Level 3, Italian Building, London
ently, has resulted in increased exploration of behavioural, WC1N 3JH, UK.
cognitive and neuroanatomical patterns across the sexes. Email: [email protected]
662 Autism 21(6)

with symptoms beginning to vary between the sexes with Although it sheds light on personal experience, the
maturation (Frazier et al., 2014; Hartley and Sikora, 2009; existing qualitative literature lacks clear definition of ASD
May et al., 2012). As well as challenging the notion that in their samples, it excludes individuals with an IQ ⩽ 70
fewer girls are diagnosed due to their unique symptomol- and fails to specifically include the voices of adult women
ogy, this highlights the importance of extending research (DePape and Lindsay, 2016). Moreover, their use of ana-
to adult samples. lytical methods such as thematic analysis and interpretive
In doing so, Lai et al. (2011) did not find differences in phenomenological analysis seek to present a universal pro-
reciprocal social interaction, communication, repetitive file which risks overlooking individual narratives.
stereotyped behaviour or coexisting psychiatric conditions Autobiographical accounts published by women with
in men and women with ASD and IQ ⩾ 70. Their sample ASD begin to expose the role cultural expectations of
had similar severity of childhood symptoms, but the women play in their lived experiences, particularly with
women reported more traits of autism in adulthood and regard to their gendered roles and social relationships
demonstrated fewer. The authors, and Attwood (2006), (Meyerding, 2003; Miller, 2003; Simone, 2010). Their sto-
hypothesised that they had developed greater compensa- ries highlight the difficulty women may face if they fail to
tory strategies and the ability to camouflage their level of fit a specific stereotype; the feminine, fashion-conscious
need, although this was not grounded in research data. figure (Miller, 2003; Simone, 2010) or the sensitive, sooth-
It is difficult to make coherent sense of whether male ing caregiver (Meyerding, 2003) for example.
and female populations with ASD have varied experiences In failing to ‘fit in’ some women have described their
in line with their sex. The field is marked by significant sense of feeling ‘defected’ and ‘fake’ (Miller, 2003) in
variation in methodology and the majority of participants their struggle to achieve an idea of themselves within a
have average or above average intellectual functioning. social world, and culture, that is bound by expectations
Furthermore, suggestions have emerged that gold standard and norms that deviate from their natural being (Miller,
diagnostic tools for autism are moulded around the male 2003; Simone, 2010). Masilamani (2003) poignantly
phenotype (Kopp and Gillberg, 2011), and thus lack sensi- described a ‘core of nothingness’ when seeking to disen-
tivity towards symptomology that girls may display (Yaull- tangle an authentic sense of self from gendered expecta-
Smith, 2008). Andersson et al. (2013) suggest that only tions. The existing literature appears to reflect a pressure to
‘male-like’ girls are recruited using these tools, thus limit- present a façade of a feminine, capable woman; a good
ing the potential for sex differences. mother, a good wife and a social caretaker with individuals
Research also needs to be extended to adult samples due who lack the insight, energy and skill base with which to
to the difficulties they may have accessing assessment, achieve it (Golubock, 2003; Masilamani, 2003; Meyerding,
intervention and support services (Department of Health 2003; Shelly, 2003; Simone, 2010).
(DoH), 2009). Reviews of adult outcomes suggest, even Although insightful and valuable, it is possible that this
with a childhood diagnosis, adulthood can be fraught with autobiographical perspective of the condition, gendered
challenges. Within a group of 68 adults with an ASD and roles and social experience may be very different for less
IQ ⩾ 50 only 22% demonstrated a ‘good’ or ‘very good’ intellectually able and less affluent women. Due to the het-
outcome (Howlin et al., 2004) and very few with an IQ ⩾ 70 erogeneous nature of the autism spectrum, it is important
lived alone, described having friends or being in permanent that voices within the wider community are heard.
employment. In addition, specialist schooling was not asso-
ciated with a good outcome (Howlin et al., 2013).
The current study
This study aimed to enable the marginalised voice of
Experiences of people with ASD women diagnosed with ASD in adulthood, regardless of
There is a paucity of qualitative literature exploring the their level of intellectual ability, and to consider what it
experiences of individuals with ASD. Studies focusing on means to be on the autism spectrum and how it feels. In
the experiences of young girls with ASD have striking accessing both meaning and emotion, the study aimed to
themes of victimisation and isolation (Beteta, 2008; connect with and understand the multifaceted aspects of
Cridland et al., 2014; Stewart, 2010). While some partici- their human experience and to answer the broad question
pants felt nurtured by female peers they had known from a of ‘what are the lived experiences of women with ASD?’
young age (Beteta, 2008), the majority experienced some
form of bullying which they linked to interpersonal diffi-
Methodology
culties and subsequent mental ill-health (Beteta, 2008;
Stewart, 2010). Studies using mixed-adult samples iden- Narrative inquiry was selected as the method of analysis
tify experiences of social isolation due to difficulty devel- due to its central assumptions that individuals organise
oping and maintaining relationships, and an awareness of their life events as stories. These unearth how people,
a ‘mainstream’ world they are unable to access (Müller events, values, past experiences and future possibilities
et al., 2008; Ryan and Räisänen, 2008). contribute to the way individuals view and experience
Kanfiszer et al. 663

their world (Riley and Hawe, 2005). Although the contex- Procedure
tual focus of narrative inquiry enables some broad com-
mentary (Reissman, 2008), it crucially provides the Semi-structured, in-depth interviews were completed with
opportunity to shift from a generalised profile and accentu- author L.K. A broad open-ended interview structure sup-
ates the power and importance of individual voice and ported the exploration of four main areas: stories of adult-
variation. Furthermore, as a sense-making tool, story-tell- hood (‘could you tell me a little bit about your life now?’),
ing can be viewed by narrators as a method of challenging diagnosis (‘what lead to you being diagnosed with ASD?’),
existing constructs (Bamberg and Andrews, 2004; childhood (‘can you tell me a little bit about what life was
Reissman, 2008). Adults with an ASD are described as like as a child?’) and hopes for the future (‘what do you see
‘some of the most excluded and least heard people in soci- for yourself in the future?’). This aimed to provide a ‘life-
ety’ (DoH, 2009: 15); thus participant’s voice and experi- plan’ structure (Goodley, 1996), which may have benefit-
ence were placed at the centre to begin to inform our ted those with an intellectual disability (Atkinson and
understanding of ASD. Walmsley, 1999). In addition, the participants were invited
to bring specific items (such as a scrap book or photo-
graphs with them to support them to share their experi-
Participants ences). This was particularly beneficial for those with an
In-depth data were collected from a sample of seven intellectual disability. Within each period explored,
women. A small sample increased the opportunity to dis- prompts were also provided to consider relationships,
cover the unique quality of an individual’s story (Weber friendships, family, employment and hobbies. Each inter-
Cannon et al., 1998). A purposive sampling technique was view was audio-taped and transcribed by L.K., accompa-
adopted, specifically seeking to include women diagnosed nied by reflective memos (observations and reflections
in adulthood, alongside broad inclusion criteria to achieve during and after the interview) that demonstrated her con-
diversity. This enabled us to gain insight into the lives of tribution to the process and interpretation.
women who grew up with little or no support, or under- A multi-stage narrative analysis structure was applied to
standing of their needs, and explore how they conceptual- ensure the systematic analysis of the stories (Bluffield, 2006;
ised their experiences without, and then with, knowledge Sharp, 2003; Stevens, 1993; Stevens and Doerr, 1998). The
of a diagnosis. Variation existed in relation to age, demo- key stages of analysis will be described below. The analysis
graphics, intellectual ability, social support and mental focused on both how the women storied their lives, in terms
health needs. of the aspects they prioritised, and how they understood, and
conceptualised, specific aspects of their lives.
Inclusion and exclusion criteria. The women were required
to have been diagnosed with an ASD, formally, Identifying the story boundaries. First, the stories within
aged ⩾18 years, using the Autism Diagnostic Observation each interview were identified and demarcated using struc-
Schedule (ADOS; Lord et al., 1989, 2000), Diagnostic tural elements drawn from Labov and Waletsky’s (1967)
Interview for Social and Communication Disorders framework of narrative structure (orientation, plot, evalua-
(DISCO; Wing et al., 2002) or Autism Diagnostic Inter- tion and resolution).
view – Revised (ADI-R; Lord et al., 1994). Women with
varied intellectual abilities were supported to take part. Analysis of story content and context. The second stage con-
The study did not include women who did not speak fluent sisted of categorising and contextualising (Maxwell,
English, were within an acute phase of a mental health 1996). During the process of categorising, codes were
condition (or under 1:1 observations), or under the influ- applied to patterns of language, or salient concepts and
ence of alcohol or illicit drugs. beliefs within the stories demarcated in the previous stage
of analysis, and quotes were noted to represent these.
These formed themes which were compared and con-
Recruitment trasted across all the narratives. In coding the themes, the
The advice of a Specialist Speech and Language Therapist data were fractured and then rearranged ‘into categories
and a focus group of adults with autism and intellectual that facilitate the comparison of data within and between
disabilities were sought in the designing of participant’s these categories …’ (Maxwell, 1996: 78–79).
information sheets and consent forms, and the interview The process of contextualising involved embedding the
process. fractured data into each individual narrative. To achieve
Services approached included community mental this, codes and quotes were tabulated against the catego-
health treatment and assessment services, an inpatient ser- ries to support their elaboration and ensure that individual
vice for women with intellectual disabilities and a volun- voice was conserved, as demonstrated by Sharp (2003).
tary support organisation. Interviews were completed in
participant’s homes/inpatient unit or NHS service setting, Comparing and contrasting the stories. The aforementioned
accompanied if they chose. themes were subsequently compared and contrasted across
664 Autism 21(6)

all the narratives. Story plots and their relationship to the women drew upon notions of ‘normalcy’ in how they inter-
themes were considered in order to locate them in context nalised the representation of the self.
and allow for varied narratives to emerge. According to the World Health Organization (WHO,
2015), the term ‘sex’ ‘refers to the biological and physio-
logical characteristics that define men and women’, and
Methodological rigour
‘gender’ ‘refers to the socially constructed roles, behav-
This was achieved by adhering to the four constructs pos- iours, activities, and attributes that a given society consid-
ited by Reissman (2008) that seek to establish trustworthi- ers appropriate for men and women’. The terms ‘male’ and
ness and validity while recognising that a narrative is not ‘female’ have been applied to the categorisation of sex and
to be treated as an exact record of what has happened. ‘masculine’ and ‘feminine’ to that of gender. The research-
First, correspondence with the research is demonstrated by ers have adhered, linguistically, to these definitions when
inclusion of adults with autism and intellectual disabilities interpreting the narratives, although the women may have
in the designing of the study. Second, coherence, persua- used terms interchangeably.
sion and presentation are demonstrated by (a) the identifi-
cation of ‘convergence and divergence’ (Reissman, 2008)
Gender identity
within, and between, the realities presented; and (b) the
inclusion of quotes and reflective memos promote authen- This category reflects how the women developed a sense
ticity of interpretations. Moreover, the completion of of self historically, without knowledge of autism, and as an
respondent validation by each participant ensured an ethi- adult with a diagnosis. Their identification with gender
cal underpinning. seemed central to this and to be constructed from their per-
ceptions of their physiology and cultural expectations of
women (including their beliefs about motherhood). The
Ethical considerations statements made around gender arose from conversation
Ethical approval was sought and obtained from the East of around experiences of school, friendships, adolescence
England – Cambridge South Research Ethics Committee, and relationships.
the University of Essex, and two Research and Design
Departments. Consent was obtained from participants in ‘I was just so different’. Growing up, each of the women was
line with the Mental Capacity Act (Department of labelled as odd or strange by those around them. They each
Constitutional Affairs, 2005) and supported by the use of described how they felt different to their peers and reflected
accessible information sheets. Risk was managed within on their perceived deviation from the expectations placed
the bounds of confidentiality and anonymity via commu- upon them as girls.
nication with each participant and their general practi- Danielle’s special interests were central to her identity,
tioner (GP) if necessary. Interview recordings were and feeling secure, however, they were very different from
anonymised at the point of transcription and pseudonyms her female peers which she understood as a barrier to
used throughout. friendships forming: ‘… when I was at primary school I
was very obsessed with windmills and no other kid …
shared my interest’. She poignantly described her experi-
Results ence of feeling different as an ‘invisible glass barrier
The results are based on 13.5 h of interview data. Three between me and them’ and shared the serious implications
participants (Alison, Bridget and Catherine) were securely of feeling so distanced from her peers: ‘… I remember
detained under the Mental Health Act (each had an intel- that, ’cos of this…loneliness, actually having suicidal
lectual disability) and four (Danielle, Emma, Fay and thoughts at 7 …’.
Gemma) were living independently, or with their mothers, Both Emma and Gemma also identified themselves as
in the community (they did not have an intellectual disabil- not adhering to gendered expectations when considering
ity). Their diagnoses included Autism and Asperger how their interests aligned more with their male peers: ‘…
Syndrome, as well as Borderline Personality Disorder, they [female peers] were into makeup and … pop-stars …
Schizophrenia, Bi-Polar Disorder, Depression and their interests didn’t match mine … I was into toy trains
Attention Deficit Hyperactivity Disorder. Their ages at …’. Emma’s sense of self seemed affected by a difficulty
diagnosis ranged from 19 to 56 years and, at the point of fitting into her perception of what she should be like as a
interview, between 20 and 59 years. girl: ‘… it became apparent I wasn’t really a girly girl’.
From the broad questioning around life experiences She described herself as abnormal in how her interests
emerged two overarching categories of ‘gender identity’ and impacted her relationships with peers: ‘… I didn’t get on
‘social relationships’. They illustrate how cultural expecta- with the other girls … I wasn’t behaving in a so called
tions of gender influenced how the women navigated their normal manner’. Gemma pinpointed transition into sec-
social worlds. In making sense of their experiences, the ondary school as the key period when she felt isolated
Kanfiszer et al. 665

from her peers and identified a ‘cultural shift’ that Fay was alone in identifying herself as feminine and,
excluded her: ‘suddenly they all just seemed weird … just having researched ASD, she spontaneously and firmly,
a whole different set of almost like principles, standards rejected the Extreme Male Brain Theory (e.g. Baron-
or morals’. The notion of ‘normal’ seems to have been Cohen, 2002). She seemed to perceive notions of a male
judged by others with traditional feminine stereotypes but cognitive style as almost offensive: ‘… I definitely don’t
internalised by the young women, and used negatively, to have the extreme male brain … lots of other women I
define themselves. know and myself are living proof that we’re definitely not
extreme males …’.
‘I think there’s some sort of gender identity thing’. Reflecting
on adulthood and who they were as women, some partici- ‘I never had any mothering instincts’. The representation of
pants commented upon their identification with stereotypi- the self as a mother was a pertinent topic for all of the
cal gender constructs and their female physiology. women when asked broadly about their hopes for the
Catherine, Danielle, Emma and Gemma felt they identi- future. Within this theme, the women storied compari-
fied with a construct other than femininity, thus question- sons to their female peers and their exploration of the
ing their gender identity. concept of ‘maternal instinct’, as labelled by several of
Both Catherine and Danielle shared a discomfort with the participants.
their female physiology, such as their breasts and menstru- Alison, Danielle, Emma and Gemma felt the ‘maternal
ation. Typically, these characteristics may be valued by instinct’ they perceived as typical for women, was absent
women due to their intrinsic link to femininity and repro- for them: ‘… a lot of people obviously have a lot more
duction; however, Catherine’s and Danielle’s practical rea- affection for children and babies … whereas I have abso-
soning suggests that they were a burden. For Catherine, the lutely no affection …’ (Danielle). For Gemma’s family,
time required to tend to her physical needs was inconven- this difference seemed uncomfortable and she battled their
ient: ‘Women have to have a monthly cycle … and women assumption she would want to be a mother due to her sex:
have to wear bras as well which I find quite annoying ‘… my sister … she’d had kids when I was 13/14 … so
because it takes a bit of extra time … I get a bit anxious obviously the expectation of “oh yea that’ll be you one
that I might miss cigarettes’. Her discomfort was so great day” and it’s like, what if I don’t want that?’
that it seemed to impact her sense of self: ‘… I personally Interestingly, all of the women choosing not to have chil-
don’t think I’m in the right body … I just don’t like the fact dren found their diagnosis helpful in reframing past experi-
I’m female’. ences, thus improving their self-knowledge and enabling the
Ideological constructs of femininity also seemed prob- identification of future triggers of stress (such as parenting).
lematic for the women in their attempt to connect their per- Therefore, it is possible that it is this fear that impacts their
ception of how they interacted with the world with a perception of an absent maternal instinct. Gemma felt that a
specific gender. child would simply get in the way of her desire, and need, to
In the context of feeling different to their female peers, approach life with control and predictability:
some women identified more with the men in their lives.
For Emma, spending time with women seemed detrimen- It just seemed to make everything so very awkward … you’re
tal to her sense of self: ‘… I felt like I was a follower, I overhearing things like ‘oh come on darling … mummy really
wasn’t a person in my own right …’. Gemma noticed a needs to go to the toilet’ and it’s like, personally, I’d just dump
shift around puberty, as gendered constructs became more the kid on the side of the road and go ‘fuck you, I’m going for
a piss’.
defined according to sex and she felt forced to choose the
company of boys:
The daunting nature of motherhood, in relation to expe-
Girls are sort of bothered about what they’re wearing and riences that would cause them distress or mental ill-health,
what their hair looks like and their nails and who’s cute in seemed to obstruct the desire to start a family entirely. It
what band … it’s not actually possible for me to be less seemed to override their understanding of a cultural expec-
interested … whereas the guys would be mucking about … tation that they would have children due to their sex.
something I felt more inclined to be involved with. Emma predicted she would become unwell again: ‘ … I
don’t think I could have coped with a child, I would never
Gemma’s discomfort with her peer’s interests seemed have been able to organise it or cope with the noise or
to link with her gender identification: ‘Well you see I’m far sleep disturbance, I could have probably been ill’. Alison
too much of a tomboy to particularly think of myself as a also feared negative repercussions on her well-being: ‘…
woman, but I am female’, as did Emma’s ‘… I think there’s well I knew that it wouldn’t do me any good … young
possibly some sort of gender identity thing going on asso- children are a bit hard to cope with aren’t they’, and
ciated with the autism because I always felt closer to my Danielle described motherhood as ‘nerve-wracking, stress-
dad … and loved the things my dad loved …’. ful and for me, unrewarding’.
666 Autism 21(6)

Social relationships ‘… people kept standing on the toilet next to me and pulling
my chain … and I got someone throwing things across the
Themes around interpersonal difficulties and social rela- room to hit me …’. She thought their motivation was a dis-
tionships were pertinent topics within each woman’s comfort in her, ‘funny ways’, as she attempted friendship.
reflection of their life experiences. Emma was also bullied due to her attempts to interact with
peers: ‘… they just ostracised me … what they called “sent
‘When I try, the conversation just goes dead’. All of the to Coventry” where no one in the dormitory would speak to
women described obstacles to the development of social me (laughs) because I so alienated them …’. Emma now
relationships and the effects on their emotional well-being. frames these experiences with Asperger Syndrome but she
Danielle’s difficulties with social interaction resulted in continues to hold some of the self-blame she felt at the time:
little confidence in other’s wanting her company: ‘I find ‘… It’s my reactions, and the way I interacted with people
when striking up conversations with strangers that … wasn’t appropriate …’.
some of these people happily chat with someone else eas- Gemma’s experiences of victimisation were specifi-
ily enough, when I try the conversation just goes dead … cally during adolescence: ‘in secondary school I just got
it’s just dispiriting’. Fay’s lack of confidence, paired with the shit kicked out of me mentally, physically, emotionally,
poor social communication skills, similarly limited her the works, and the teachers joined in’. She understood her
social experiences and prevented her from having her experiences in the context of deviating from the interests
needs met: ‘I think I don’t act assertive enough … I can’t of female peers and demonstrating a level of intellect that
always get things to turn out the way I want them … I was not shared by those around her.
sometimes get walked all over’. Both Fay and Bridget also storied experiences of sexual
Alison, Bridget, Emma and Gemma also storied the victimisation. With a difficulty judging subtle social cues,
bearing the traits of autism had on their social relation- for example, flirting, aggression or coercion, Fay has been
ships. Bridget specifically linked her difficulties ‘meeting very vulnerable and had multiple experiences of being
new people [or a] change in environment’ with autism and sexually assaulted:
spoke about how they led her to feel anxious and aggres-
sive, making it hard to feel confident in social situations. Some of them were complete strangers … I think some of
Emma and Gemma also seemed to refer to a lack of flexi- the time I gave the men the benefit of the doubt when I
bility in social situations as contributing to feelings of shouldn’t have and at other times I didn’t want to go
anxiety or anger, specifically related to others not follow- anywhere with those men … but I ended up with them
ing rules they strongly adhered to. Gemma’s story of anyway somehow.
attacking school peers was paradoxical; she observed her
code of morality to the extent she overlooked broader
social rules against violence: ‘… I beat up two top year
Discussion
kids on my first day in junior school because they picked Variation in the women’s personal experiences, living
on my friend because she was the only black kid …’. situation at the point of interview, experiences of depriva-
The presence of an ASD label seemed to provide a lens tion, socio-economic status and intellectual ability con-
with which the women could directly make sense of these textualised the categories and themes. Although seven
experiences: ‘… I’ve got very little of that [friendly rela- very different narratives emerged, the overarching themes
tionships] … I think most people have magnetism between map onto those identified within DePape and Lindsay’s
them which is lacking in autism …’ (Danielle). For Emma (2016) meta-synthesis of the experiences of men and
and Fay, this frame of reference also enabled them to women with ASD.
develop specific skills: ‘… I’ve learnt a lot of things sub- The women were united in how challenging they found
sequent to my diagnosis, like one of the things that I was social relationships and their experiences of maltreatment
never aware of was how important it was to engage in from others. Their lack of skills and confidence interact-
small talk with your colleagues’. Having made this pro- ing with other people, paired with odd behaviour or differ-
gress, Emma reflected on the difference being assessed ent interests, resulted in a shared sense of others being
before aged 56 could have made: ‘… I was following rules disinterested in them and uncomfortable in their company.
that could be broken … not realising that you can actually In making sense of their experiences, the women drew
slightly bend the rules …’. upon notions of ‘normalcy’ in how they internalised a rep-
resentation of the self. The definition of ‘normal’, from
‘People didn’t want to know me’. This theme captures the which they all believed they deviated, was created by
threads of victimisation within the stories. Difficulties with their peers as children and an ideological frame of gen-
social interaction, being very intellectual or having differ- dered expectations. As adults, their perceived difference
ent interests seemed central to these negative experiences. stemmed from a cultural expectation that they would be
Alison described the children at school as ‘always saying feminine (defined by their interests and appearance) and
horrible things to me’ and had ongoing battles with peers: would want to have children. Nonconformity with these
Kanfiszer et al. 667

representations resulted in questions around their gender between them and their typically developing peers. This
identity and the comfort they felt in their own body. may be specifically related to gendered expectations.
The individual stories uncovered by this study both A key strength of this study is the ethical structure
align with and extend existing literature related to a female applied to the methodology to ensure less privileged
population’s experience of autism. The findings query women and those with intellectual limitations could par-
observational and quantitative data suggesting that female ticipate. These women represent a silent population
populations have the ability to ‘camouflage’ their needs excluded from previous research. In addition, seeking to
with the support of female peers and to learn social scripts create a collection of individual narratives rather than a
with appropriate social behaviours (Attwood, 2006; universal profile of experience, this study stands as an
Faherty, 2006; Gould and Ashton-Smith, 2011; Kopp exception within the existing research field and allows
et al., 2010; Willey, 2003). Reflecting on childhood events, for cultural ideology to be considered in our understand-
all of the women shared experiences of feeling different ing of autism.
and being persecuted as a result. None of them disclosed However, there were limitations within the sample,
experiences of social scaffolding from their peers. They such as minimal ethnic diversity. In addition, the analytic
were all perceived by professionals and family members as focus on what the women spoke about, rather than how,
‘odd’ or ‘difficult’ and displayed challenging behaviour. may have limited the ability to apply the meaning held
The women’s recollections were broadly in line with the within the stories to the broader field. Furthermore, the
experiences of adolescent girls already investigated (Beteta, sample was self-selecting which may alter the types of sto-
2008; Cridland et al., 2014; Stewart, 2010), in that they too ries told.
experienced significant victimisation. Within this study, the
women within an inpatient setting, with lower intellectual
Conclusion
functioning, believed a lack of social skills caused their
peers to respond negatively. However, the women within As the first step in hearing the stories of women with
the community (with greater intellectual ability) largely autism, this study addressed broad life-span issues.
drew upon their deviation from gender stereotypes as the Subsequent research could begin to explore specific areas
basis for their peer’s behaviour. This was replicated in how of life experience mentioned within this study, in more
they spoke about their gender identity. The women with depth. It may also be beneficial to explore women’s per-
lower intellectual ability focused on physiological repre- ception of their own, and other people’s, gender develop-
sentations of being a woman, whereas those more cogni- ment further. The findings may contribute to knowledge of
tively able reflected on adherence to cultural stereotypes how best to support identity formation in adolescent girls
(e.g. being interested in makeup and babies). This aware- on the autism spectrum.
ness, and subsequent internal-external conflict relating to The findings highlight that, although for these women it
gender, may develop with intellectual maturity. was adult services that noticed them, some of them faced a
This finding may also contribute to our cognitive under- number of barriers before reaching assessment. Therefore,
standing of autism. The women’s consideration of abstract reinforcing the Autism Act (DoH, 2009), adult services
notions of gender stereotypes suggests that they hold need to continue to invest in training to ensure profession-
capacity for some complex meta-representations around als are alert to the needs of someone with autism. In addi-
other people’s perception of them. This finding may rein- tion, they need to be sensitive to a generation who did not
force previous research identifying greater cognitive abili- benefit from equipped children’s services and who may
ties and social awareness of females with ASD (Bölte present with complex needs as a result of not being sup-
et al., 2011; Hartley and Sikora, 2009; May et al., 2012), ported or feeling fully understood.
although it was not necessarily translated into advanced This study did not identify a homogenous group of
social skills. women but highlighted the heterogeneity that may exist
Furthermore, an emerging understanding of what is within a female population with autism. A larger sample
‘normal’ and ‘abnormal’ alongside a developing under- would improve our understanding of whether this is the
standing of sociological aspects of gender may be impli- case. It has brought into question existing understanding of
cated in Lai et al.’s (2011) findings whereby women a female population with autism and allowed for the intri-
reported more ASD symptoms but demonstrated fewer in cacies of individual experience to be heard and under-
adulthood. It was suggested this was due to their ability to stood. It allowed a group of women who may otherwise
copy their peers and maintain an inherent motivation to not share their story to be heard and to bring to the fore-
develop social capability, so upon reaching adulthood, front the role of culturally located factors in the formation
their symptoms lessened. However, perhaps, Lai et al.’s of our understanding of ‘normal’ and highlights the impor-
(2011) population was instead identifying more symptoms tance of considering them within our cognitive and behav-
alongside a greater awareness of fundamental differences ioural understanding of autism.
668 Autism 21(6)

Funding Goodley D (1996) Tales of hidden lives: a critical examination of

life history research with people who have learning difficul-
The author(s) received no financial support for the research,
ties. Disability & Society 11(3): 333–348.
authorship and/or publication of this article.
Gould J and Ashton-Smith J (2011) Missed diagnosis or misdi-
agnosed? Girls and women on the autism spectrum. Good
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