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 barriers 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 difficulties 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 treatment…years of talking therapy…and not once did anyone suggest I had anything other than depression”. (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 doctor…and 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 me…I asked my mum, who was a GP at the time…if she thought I was autistic. She said, ‘Of course not’. At the time, a good 10 years ago now, there just wasn’t much information 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’ reluctance to diagnose females who showed some capacity, albeit superficial, to socialise with others. Young women also felt that ‘Rain Man’ (P03) stereotypes, which incorrectly 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 so…he [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 complaining 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 antagonise 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 themselves…when 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 suggestible…and I might not have ended up in the situations that I did.” (P14)
Pretending to be Normal
Interestingly, most women reported that, whilst in childhood teachers did not notice their difficulties, other children were very sensitive to their differences. This theme includes such experiences as being seen by peers as ‘different’ 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 cultivated 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 situations 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 characters 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 her…she 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] camps…and I would come back with strong accents. But I can’t consciously put on an accent…my 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 ‘mimicking’. 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 participants considered their experiences of victimisation, their accounts often included narratives of passivity and assertiveness. They described how their perceived passivity, 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 apologise - 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 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 participants) 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 feelings…I 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 manipulated. 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 diagnosis 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 everyone’, 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:
“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 with…I 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: “girls…socially are a lot quicker” (P02). The young women had also found gossip and competition amongst females difficult to navigate.
“The gossip…in women that can be quite hard…if they’re talking about someone sometimes it’s hard to know whether they are… [being] mean…you 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 communication 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. Friendships 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 disorder…it 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 establishing 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 life…I would say I forge most of my identity on that and the degree…they 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:
“It’s very good…for 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.