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.
Introduction
Science has been privileged in defining autism and consequent human difference, rather than the culture and society within which norms exist (Smukler, 2005). Nadeson (2005) questions the extent to which cultural representations of normalcy change over time and thus how a ‘true’ representation of autism can be obtained.
When consulted on their priorities for autism research, members of a UK autism community unanimously identified a bias within the literature towards children and ‘neurotypical priorities’ that focused, for example, on unearthing underlying causes, rather than life experiences, thus failing to improve them (Pellicano et al., 2014).Within the context of poor outcomes for many adults with autism (Howlin et al., 2004, 2013), it is unsurprising that this community has requested research that improves their quality of life and our understanding of their needs.
Debate surrounding whether autism is less detectable in female populations because it affects them less, or differently, has resulted in increased exploration of behavioural, cognitive and neuroanatomical patterns across the sexes. However, the research with children with autism spectrum disorder (ASD) has produced variable results. Studies utilising samples matched on chronological age and receptive language functioning have not identified sex differences in ASD symptomology, cognitive or perceptual functioning in groups diagnosed with autism and an intellectual disability (Pilowsky et al., 1998; Tsai and Biesler, 1983) or those with higher-functioning autism and no intellectual disability (Holtman et al., 2007).
Inconsistent findings suggest that sex differences may vary throughout childhood and be constrained by age; with symptoms beginning to vary between the sexes with maturation (Frazier et al., 2014; Hartley and Sikora, 2009; May et al., 2012). As well as challenging the notion that fewer girls are diagnosed due to their unique symptomology, this highlights the importance of extending research to adult samples.
In doing so, Lai et al. (2011) did not find differences in reciprocal social interaction, communication, repetitive stereotyped behaviour or coexisting psychiatric conditions in men and women with ASD and IQ ≥ 70. Their sample had similar severity of childhood symptoms, but the women reported more traits of autism in adulthood and demonstrated fewer. The authors, and Attwood (2006), hypothesised that they had developed greater compensatory strategies and the ability to camouflage their level of need, although this was not grounded in research data.
It is difficult to make coherent sense of whether male and female populations with ASD have varied experiences in line with their sex. The field is marked by significant variation in methodology and the majority of participants have average or above average intellectual functioning. Furthermore, suggestions have emerged that gold standard diagnostic tools for autism are moulded around the male phenotype (Kopp and Gillberg, 2011), and thus lack sensitivity towards symptomology that girls may display (Yaull-Smith, 2008). Andersson et al. (2013) suggest that only ‘male-like’ girls are recruited using these tools, thus limiting the potential for sex differences.
Research also needs to be extended to adult samples due to the difficulties they may have accessing assessment, intervention and support services (Department of Health (DoH), 2009). Reviews of adult outcomes suggest, even with a childhood diagnosis, adulthood can be fraught with challenges. Within a group of 68 adults with an ASD and IQ ≥ 50 only 22% demonstrated a ‘good’ or ‘very good’ outcome (Howlin et al., 2004) and very few with an IQ ≥ 70 lived alone, described having friends or being in permanent employment. In addition, specialist schooling was not associated with a good outcome (Howlin et al., 2013).
Experiences of people with ASD
There is a paucity of qualitative literature exploring the experiences of individuals with ASD. Studies focusing on the experiences of young girls with ASD have striking themes of victimisation and isolation (Beteta, 2008; Cridland et al., 2014; Stewart, 2010). While some participants felt nurtured by female peers they had known from a young age (Beteta, 2008), the majority experienced some form of bullying which they linked to interpersonal difficulties and subsequent mental ill-health (Beteta, 2008; Stewart, 2010). Studies using mixed-adult samples identify experiences of social isolation due to difficulty developing and maintaining relationships, and an awareness of a ‘mainstream’ world they are unable to access (Müller et al., 2008; Ryan and Räisänen, 2008).
Although it sheds light on personal experience, the existing qualitative literature lacks clear definition of ASD in their samples, it excludes individuals with an IQ ≤ 70 and fails to specifically include the voices of adult women (DePape and Lindsay, 2016). Moreover, their use of analytical methods such as thematic analysis and interpretive phenomenological analysis seek to present a universal profile which risks overlooking individual narratives.
Autobiographical accounts published by women with ASD begin to expose the role cultural expectations of women play in their lived experiences, particularly with regard to their gendered roles and social relationships (Meyerding, 2003; Miller, 2003; Simone, 2010). Their stories highlight the difficulty women may face if they fail to fit a specific stereotype; the feminine, fashion-conscious figure (Miller, 2003; Simone, 2010) or the sensitive, soothing caregiver (Meyerding, 2003) for example.
In failing to ‘fit in’ some women have described their sense of feeling ‘defected’ and ‘fake’ (Miller, 2003) in their struggle to achieve an idea of themselves within a social world, and culture, that is bound by expectations and norms that deviate from their natural being (Miller, 2003; Simone, 2010). Masilamani (2003) poignantly described a ‘core of nothingness’ when seeking to disentangle an authentic sense of self from gendered expectations. The existing literature appears to reflect a pressure to present a façade of a feminine, capable woman; a good mother, a good wife and a social caretaker with individuals who lack the insight, energy and skill base with which to achieve it (Golubock, 2003; Masilamani, 2003; Meyerding, 2003; Shelly, 2003; Simone, 2010).
Although insightful and valuable, it is possible that this autobiographical perspective of the condition, gendered roles and social experience may be very different for less intellectually able and less affluent women. Due to the heterogeneous nature of the autism spectrum, it is important that voices within the wider community are heard.
The current study
This study aimed to enable the marginalised voice of women diagnosed with ASD in adulthood, regardless of their level of intellectual ability, and to consider what it means to be on the autism spectrum and how it feels. In accessing both meaning and emotion, the study aimed to connect with and understand the multifaceted aspects of their human experience and to answer the broad question of ‘what are the lived experiences of women with ASD?’
Methodology
Narrative inquiry was selected as the method of analysis due to its central assumptions that individuals organise their life events as stories. These unearth how people, events, values, past experiences and future possibilities contribute to the way individuals view and experience their world (Riley and Hawe, 2005). Although the contextual focus of narrative inquiry enables some broad commentary (Reissman, 2008), it crucially provides the opportunity to shift from a generalised profile and accentuates the power and importance of individual voice and variation. Furthermore, as a sense-making tool, story-telling can be viewed by narrators as a method of challenging existing constructs (Bamberg and Andrews, 2004; Reissman, 2008). Adults with an ASD are described as ‘some of the most excluded and least heard people in society’ (DoH, 2009: 15); thus participant’s voice and experience were placed at the centre to begin to inform our understanding of ASD.
Participants
In-depth data were collected from a sample of seven women. A small sample increased the opportunity to discover the unique quality of an individual’s story (Weber Cannon et al., 1998). A purposive sampling technique was adopted, specifically seeking to include women diagnosed in adulthood, alongside broad inclusion criteria to achieve diversity. This enabled us to gain insight into the lives of women who grew up with little or no support, or understanding of their needs, and explore how they conceptualised their experiences without, and then with, knowledge of a diagnosis. Variation existed in relation to age, demographics, intellectual ability, social support and mental health needs.
Inclusion and exclusion criteria
The women were required to have been diagnosed with an ASD, formally, aged ≥18 years, using the Autism Diagnostic Observation Schedule (ADOS; Lord et al., 1989, 2000), Diagnostic Interview for Social and Communication Disorders (DISCO; Wing et al., 2002) or Autism Diagnostic Interview – Revised (ADI-R; Lord et al., 1994). Women with varied intellectual abilities were supported to take part. The study did not include women who did not speak fluent English, were within an acute phase of a mental health condition (or under 1:1 observations), or under the influence of alcohol or illicit drugs.
Recruitment
The advice of a Specialist Speech and Language Therapist and a focus group of adults with autism and intellectual disabilities were sought in the designing of participant’s information sheets and consent forms, and the interview process.
Services approached included community mental health treatment and assessment services, an inpatient service for women with intellectual disabilities and a voluntary support organisation. Interviews were completed in participant’s homes/inpatient unit or NHS service setting, accompanied if they chose.
Procedure
Semi-structured, in-depth interviews were completed with author L.K. A broad open-ended interview structure supported the exploration of four main areas: stories of adulthood (‘could you tell me a little bit about your life now?’), diagnosis (‘what lead to you being diagnosed with ASD?’), childhood (‘can you tell me a little bit about what life was like as a child?’) and hopes for the future (‘what do you see for yourself in the future?’). This aimed to provide a ‘life-plan’ structure (Goodley, 1996), which may have benefitted those with an intellectual disability (Atkinson and Walmsley, 1999). In addition, the participants were invited to bring specific items (such as a scrap book or photographs with them to support them to share their experiences). This was particularly beneficial for those with an intellectual disability. Within each period explored, prompts were also provided to consider relationships, friendships, family, employment and hobbies. Each interview was audio-taped and transcribed by L.K., accompanied by reflective memos (observations and reflections during and after the interview) that demonstrated her contribution to the process and interpretation.
A multi-stage narrative analysis structure was applied to ensure the systematic analysis of the stories (Bluffield, 2006; Sharp, 2003; Stevens, 1993; Stevens and Doerr, 1998). The key stages of analysis will be described below. The analysis focused on both how the women storied their lives, in terms of the aspects they prioritised, and how they understood, and conceptualised, specific aspects of their lives.
Identifying the story boundaries
First, the stories within each interview were identified and demarcated using structural elements drawn from Labov and Waletsky’s (1967) framework of narrative structure (orientation, plot, evaluation and resolution).
Analysis of story content and context
The second stage consisted of categorising and contextualising (Maxwell, 1996). During the process of categorising, codes were applied to patterns of language, or salient concepts and 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 contrasted across all the narratives. In coding the themes, the data were fractured and then rearranged ‘into categories that facilitate the comparison of data within and between these categories …’ (Maxwell, 1996: 78–79).
The process of contextualising involved embedding the fractured data into each individual narrative. To achieve this, codes and quotes were tabulated against the categories to support their elaboration and ensure that individual voice was conserved, as demonstrated by Sharp (2003).
Comparing and contrasting the stories
The aforementioned themes were subsequently compared and contrasted across all the narratives. Story plots and their relationship to the themes were considered in order to locate them in context and allow for varied narratives to emerge.
Methodological rigour
This was achieved by adhering to the four constructs posited by Reissman (2008) that seek to establish trustworthiness and validity while recognising that a narrative is not to be treated as an exact record of what has happened. First, correspondence with the research is demonstrated by inclusion of adults with autism and intellectual disabilities in the designing of the study. Second, coherence, persuasion and presentation are demonstrated by (a) the identification of ‘convergence and divergence’ (Reissman, 2008) within, and between, the realities presented; and (b) the inclusion of quotes and reflective memos promote authenticity of interpretations. Moreover, the completion of respondent validation by each participant ensured an ethical underpinning.
Ethical considerations
Ethical approval was sought and obtained from the East of England – Cambridge South Research Ethics Committee, the University of Essex, and two Research and Design Departments. Consent was obtained from participants in line with the Mental Capacity Act (Department of Constitutional Affairs, 2005) and supported by the use of accessible information sheets. Risk was managed within the bounds of confidentiality and anonymity via communication with each participant and their general practitioner (GP) if necessary. Interview recordings were anonymised at the point of transcription and pseudonyms used throughout.
Results
The results are based on 13.5 h of interview data. Three participants (Alison, Bridget and Catherine) were securely detained under the Mental Health Act (each had an intellectual disability) and four (Danielle, Emma, Fay and Gemma) were living independently, or with their mothers, in the community (they did not have an intellectual disability). Their diagnoses included Autism and Asperger Syndrome, as well as Borderline Personality Disorder, Schizophrenia, Bi-Polar Disorder, Depression and Attention Deficit Hyperactivity Disorder. Their ages at diagnosis ranged from 19 to 56 years and, at the point of interview, between 20 and 59 years.
From the broad questioning around life experiences emerged two overarching categories of ‘gender identity’ and ‘social relationships’. They illustrate how cultural expectations of gender influenced how the women navigated their social worlds. In making sense of their experiences, the women drew upon notions of ‘normalcy’ in how they internalised the representation of the self.
According to the World Health Organization (WHO, 2015), the term ‘sex’ ‘refers to the biological and physiological characteristics that define men and women’, and ‘gender’ ‘refers to the socially constructed roles, behaviours, activities, and attributes that a given society considers appropriate for men and women’. The terms ‘male’ and ‘female’ have been applied to the categorisation of sex and ‘masculine’ and ‘feminine’ to that of gender. The researchers have adhered, linguistically, to these definitions when interpreting the narratives, although the women may have used terms interchangeably.
Gender identity
This category reflects how the women developed a sense of self historically, without knowledge of autism, and as an adult with a diagnosis. Their identification with gender seemed central to this and to be constructed from their perceptions of their physiology and cultural expectations of women (including their beliefs about motherhood). The statements made around gender arose from conversation around experiences of school, friendships, adolescence and relationships.
‘I was just so different’
Growing up, each of the women was labelled as odd or strange by those around them. They each described how they felt different to their peers and reflected on their perceived deviation from the expectations placed upon them as girls.
Danielle’s special interests were central to her identity, and feeling secure, however, they were very different from her female peers which she understood as a barrier to 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 experience of feeling different as an ‘invisible glass barrier between me and them’ and shared the serious implications of feeling so distanced from her peers: ‘… I remember that, ’cos of this…loneliness, actually having suicidal thoughts at 7 …’.
Both Emma and Gemma also identified themselves as not adhering to gendered expectations when considering how their interests aligned more with their male peers: ‘… they [female peers] were into makeup and … pop-stars … their interests didn’t match mine … I was into toy trains …’. Emma’s sense of self seemed affected by a difficulty fitting into her perception of what she should be like as a girl: ‘… it became apparent I wasn’t really a girly girl’. She described herself as abnormal in how her interests impacted her relationships with peers: ‘… I didn’t get on with the other girls … I wasn’t behaving in a so called normal manner’. Gemma pinpointed transition into secondary school as the key period when she felt isolated from her peers and identified a ‘cultural shift’ that excluded her: ‘suddenly they all just seemed weird … just a whole different set of almost like principles, standards or morals’. The notion of ‘normal’ seems to have been judged by others with traditional feminine stereotypes but internalised by the young women, and used negatively, to define themselves.
‘I think there’s some sort of gender identity thing’
Reflecting on adulthood and who they were as women, some participants commented upon their identification with stereotypical gender constructs and their female physiology. Catherine, Danielle, Emma and Gemma felt they identified with a construct other than femininity, thus questioning their gender identity.
Both Catherine and Danielle shared a discomfort with their female physiology, such as their breasts and menstruation. Typically, these characteristics may be valued by women due to their intrinsic link to femininity and reproduction; however, Catherine’s and Danielle’s practical reasoning suggests that they were a burden. For Catherine, the time required to tend to her physical needs was inconvenient: ‘Women have to have a monthly cycle … and women have to wear bras as well which I find quite annoying because it takes a bit of extra time … I get a bit anxious that I might miss cigarettes’. Her discomfort was so great that it seemed to impact her sense of self: ‘… I personally don’t think I’m in the right body … I just don’t like the fact I’m female’.
Ideological constructs of femininity also seemed problematic for the women in their attempt to connect their perception of how they interacted with the world with a specific gender.
In the context of feeling different to their female peers, some women identified more with the men in their lives. For Emma, spending time with women seemed detrimental to her sense of self: ‘… I felt like I was a follower, I wasn’t a person in my own right …’. Gemma noticed a shift around puberty, as gendered constructs became more defined according to sex and she felt forced to choose the company of boys:
Girls are sort of bothered about what they’re wearing and what their hair looks like and their nails and who’s cute in what band … it’s not actually possible for me to be less interested … whereas the guys would be mucking about … something I felt more inclined to be involved with.
Gemma’s discomfort with her peer’s interests seemed to link with her gender identification: ‘Well you see I’m far too much of a tomboy to particularly think of myself as a woman, but I am female’, as did Emma’s ‘… I think there’s possibly some sort of gender identity thing going on associated with the autism because I always felt closer to my dad … and loved the things my dad loved …’.
Fay was alone in identifying herself as feminine and, having researched ASD, she spontaneously and firmly, rejected the Extreme Male Brain Theory (e.g. Baron-Cohen, 2002). She seemed to perceive notions of a male cognitive style as almost offensive: ‘… I definitely don’t have the extreme male brain … lots of other women I know and myself are living proof that we’re definitely not extreme males …’.
‘I never had any mothering instincts’
The representation of the self as a mother was a pertinent topic for all of the women when asked broadly about their hopes for the future. Within this theme, the women storied comparisons to their female peers and their exploration of the concept of ‘maternal instinct’, as labelled by several of the participants.
Alison, Danielle, Emma and Gemma felt the ‘maternal instinct’ they perceived as typical for women, was absent for them: ‘… a lot of people obviously have a lot more affection for children and babies … whereas I have absolutely no affection …’ (Danielle). For Gemma’s family, this difference seemed uncomfortable and she battled their assumption she would want to be a mother due to her sex: ‘… my sister … she’d had kids when I was 13/14 … so obviously the expectation of “oh yea that’ll be you one day” and it’s like, what if I don’t want that?’
Interestingly, all of the women choosing not to have children found their diagnosis helpful in reframing past experiences, thus improving their self-knowledge and enabling the identification of future triggers of stress (such as parenting). Therefore, it is possible that it is this fear that impacts their perception of an absent maternal instinct. Gemma felt that a child would simply get in the way of her desire, and need, to approach life with control and predictability:
It just seemed to make everything so very awkward … you’re overhearing things like ‘oh come on darling … mummy really needs to go to the toilet’ and it’s like, personally, I’d just dump the kid on the side of the road and go ‘fuck you, I’m going for a piss’.
The daunting nature of motherhood, in relation to experiences that would cause them distress or mental ill-health, seemed to obstruct the desire to start a family entirely. It seemed to override their understanding of a cultural expectation that they would have children due to their sex. Emma predicted she would become unwell again: ‘ … I don’t think I could have coped with a child, I would never have been able to organise it or cope with the noise or sleep disturbance, I could have probably been ill’. Alison also feared negative repercussions on her well-being: ‘… well I knew that it wouldn’t do me any good … young children are a bit hard to cope with aren’t they’, and Danielle described motherhood as ‘nerve-wracking, stressful and for me, unrewarding’.
Social relationships
Themes around interpersonal difficulties and social relationships were pertinent topics within each woman’s reflection of their life experiences.
‘When I try, the conversation just goes dead’
All of the women described obstacles to the development of social relationships and the effects on their emotional well-being. Danielle’s difficulties with social interaction resulted in little confidence in other’s wanting her company: ‘I find when striking up conversations with strangers that … some of these people happily chat with someone else easily enough, when I try the conversation just goes dead … it’s just dispiriting’. Fay’s lack of confidence, paired with poor social communication skills, similarly limited her social experiences and prevented her from having her needs met: ‘I think I don’t act assertive enough … I can’t always get things to turn out the way I want them … I sometimes get walked all over’.
Alison, Bridget, Emma and Gemma also storied the bearing the traits of autism had on their social relationships. Bridget specifically linked her difficulties ‘meeting new people [or a] change in environment’ with autism and spoke about how they led her to feel anxious and aggressive, making it hard to feel confident in social situations. Emma and Gemma also seemed to refer to a lack of flexibility in social situations as contributing to feelings of anxiety or anger, specifically related to others not following rules they strongly adhered to. Gemma’s story of 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 kids on my first day in junior school because they picked on my friend because she was the only black kid …’.
The presence of an ASD label seemed to provide a lens with which the women could directly make sense of these experiences: ‘… I’ve got very little of that [friendly relationships] … I think most people have magnetism between them which is lacking in autism …’ (Danielle). For Emma and Fay, this frame of reference also enabled them to develop specific skills: ‘… I’ve learnt a lot of things subsequent to my diagnosis, like one of the things that I was never aware of was how important it was to engage in small talk with your colleagues’. Having made this progress, Emma reflected on the difference being assessed before aged 56 could have made: ‘… I was following rules that could be broken … not realising that you can actually slightly bend the rules …’.
‘People didn’t want to know me’
This theme captures the threads of victimisation within the stories. Difficulties with social interaction, being very intellectual or having different interests seemed central to these negative experiences.
Alison described the children at school as ‘always saying horrible things to me’ and had ongoing battles with peers: ‘… people kept standing on the toilet next to me and pulling my chain … and I got someone throwing things across the room to hit me …’. She thought their motivation was a discomfort in her, ‘funny ways’, as she attempted friendship. Emma was also bullied due to her attempts to interact with peers: ‘… they just ostracised me … what they called “sent to Coventry” where no one in the dormitory would speak to me (laughs) because I so alienated them …’. Emma now frames these experiences with Asperger Syndrome but she continues to hold some of the self-blame she felt at the time: ‘… It’s my reactions, and the way I interacted with people wasn’t appropriate …’.
Gemma’s experiences of victimisation were specifically during adolescence: ‘in secondary school I just got the shit kicked out of me mentally, physically, emotionally, the works, and the teachers joined in’. She understood her experiences in the context of deviating from the interests of female peers and demonstrating a level of intellect that was not shared by those around her.
Both Fay and Bridget also storied experiences of sexual victimisation. With a difficulty judging subtle social cues, for example, flirting, aggression or coercion, Fay has been very vulnerable and had multiple experiences of being sexually assaulted:
Some of them were complete strangers … I think some of the time I gave the men the benefit of the doubt when I shouldn’t have and at other times I didn’t want to go anywhere with those men … but I ended up with them anyway somehow.
Discussion
Variation in the women’s personal experiences, living situation at the point of interview, experiences of deprivation, socio-economic status and intellectual ability contextualised the categories and themes. Although seven very different narratives emerged, the overarching themes map onto those identified within DePape and Lindsay’s (2016) meta-synthesis of the experiences of men and women with ASD.
The women were united in how challenging they found social relationships and their experiences of maltreatment from others. Their lack of skills and confidence interacting with other people, paired with odd behaviour or different interests, resulted in a shared sense of others being disinterested in them and uncomfortable in their company. In making sense of their experiences, the women drew upon notions of ‘normalcy’ in how they internalised a representation of the self. The definition of ‘normal’, from which they all believed they deviated, was created by their peers as children and an ideological frame of gendered expectations. As adults, their perceived difference stemmed from a cultural expectation that they would be feminine (defined by their interests and appearance) and would want to have children. Nonconformity with these representations resulted in questions around their gender identity and the comfort they felt in their own body.
The individual stories uncovered by this study both align with and extend existing literature related to a female population’s experience of autism. The findings query observational and quantitative data suggesting that female populations have the ability to ‘camouflage’ their needs with the support of female peers and to learn social scripts with appropriate social behaviours (Attwood, 2006; Faherty, 2006; Gould and Ashton-Smith, 2011; Kopp et al., 2010; Willey, 2003). Reflecting on childhood events, all of the women shared experiences of feeling different and being persecuted as a result. None of them disclosed experiences of social scaffolding from their peers. They were all perceived by professionals and family members as ‘odd’ or ‘difficult’ and displayed challenging behaviour.
The women’s recollections were broadly in line with the experiences of adolescent girls already investigated (Beteta, 2008; Cridland et al., 2014; Stewart, 2010), in that they too experienced significant victimisation. Within this study, the women within an inpatient setting, with lower intellectual functioning, believed a lack of social skills caused their peers to respond negatively. However, the women within the community (with greater intellectual ability) largely drew upon their deviation from gender stereotypes as the basis for their peer’s behaviour. This was replicated in how they spoke about their gender identity. The women with lower intellectual ability focused on physiological representations of being a woman, whereas those more cognitively able reflected on adherence to cultural stereotypes (e.g. being interested in makeup and babies). This awareness, and subsequent internal-external conflict relating to gender, may develop with intellectual maturity.
This finding may also contribute to our cognitive understanding of autism. The women’s consideration of abstract notions of gender stereotypes suggests that they hold capacity for some complex meta-representations around other people’s perception of them. This finding may reinforce previous research identifying greater cognitive abilities and social awareness of females with ASD (Bölte et al., 2011; Hartley and Sikora, 2009; May et al., 2012), although it was not necessarily translated into advanced social skills.
Furthermore, an emerging understanding of what is ‘normal’ and ‘abnormal’ alongside a developing understanding of sociological aspects of gender may be implicated in Lai et al.’s (2011) findings whereby women reported more ASD symptoms but demonstrated fewer in adulthood. It was suggested this was due to their ability to copy their peers and maintain an inherent motivation to develop social capability, so upon reaching adulthood, their symptoms lessened. However, perhaps, Lai et al.’s (2011) population was instead identifying more symptoms alongside a greater awareness of fundamental differences between them and their typically developing peers. This may be specifically related to gendered expectations.
A key strength of this study is the ethical structure applied to the methodology to ensure less privileged women and those with intellectual limitations could participate. These women represent a silent population excluded from previous research. In addition, seeking to create a collection of individual narratives rather than a universal profile of experience, this study stands as an exception within the existing research field and allows for cultural ideology to be considered in our understanding of autism.
However, there were limitations within the sample, such as minimal ethnic diversity. In addition, the analytic focus on what the women spoke about, rather than how, may have limited the ability to apply the meaning held within the stories to the broader field. Furthermore, the sample was self-selecting which may alter the types of stories told.
Conclusion
As the first step in hearing the stories of women with autism, this study addressed broad life-span issues. Subsequent research could begin to explore specific areas of life experience mentioned within this study, in more depth. It may also be beneficial to explore women’s perception of their own, and other people’s, gender development further. The findings may contribute to knowledge of how best to support identity formation in adolescent girls on the autism spectrum.
The findings highlight that, although for these women it was adult services that noticed them, some of them faced a number of barriers before reaching assessment. Therefore, reinforcing the Autism Act (DoH, 2009), adult services need to continue to invest in training to ensure professionals are alert to the needs of someone with autism. In addition, they need to be sensitive to a generation who did not benefit from equipped children’s services and who may present with complex needs as a result of not being supported or feeling fully understood.
This study did not identify a homogenous group of women but highlighted the heterogeneity that may exist within a female population with autism. A larger sample would improve our understanding of whether this is the case. It has brought into question existing understanding of a female population with autism and allowed for the intricacies of individual experience to be heard and understood. It allowed a group of women who may otherwise not share their story to be heard and to bring to the forefront the role of culturally located factors in the formation of our understanding of ‘normal’ and highlights the importance of considering them within our cognitive and behavioural understanding of autism.
Footnotes
Funding
The author(s) received no financial support for the research, authorship and/or publication of this article.