MischievousMochi
Well-Known Member
Source: The Experiences of Late-Diagnosed Women with Autism Spectrum Conditions
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)
Last edited: