From an abundance of relevant transcript data, five overarching themes comprising seventeen subthemes were identified and are presented in Table 2.
Whilst some of the themes and subthemes have been identified in current literature, we deemed it important to report them in our paper to support existing findings. There were several unique subthemes revealed in our data, for example ‘living in a neurotypical world’, ‘vulnerability’, ‘feeling different’ and the theme of ‘potential obstacles for women and girls with autism’.
To ensure confidentiality, quotes are labelled with “FP” and a unique code to identify quotes from parents, or “FF” and a unique code to identify quotes from the autistic females themselves.
Theme 1: Fitting in with the Norm
This theme encapsulates the attempts, both successful and unsuccessful, that women and girls make to attempt to fit in with their peers and society. We define “norm” as typical and/or expected behaviours.
Subtheme 1.1: Friendship Motivation, Conflict and Maintenance
Friendship was mentioned by the majority of the women, girls and parents as a difficulty faced by females with autism.
All my life is like I didn’t fit in, like I had friends and they weren’t like my proper friends and I’d fall out with them (FF17)
This 40-years-old woman’s quote reflected the experiences of the majority of the participants and demonstrates that although the women were able to make friends, it often felt as though they were not truly part of the group or the same as their peers. One mother made a poignant comment.
I felt at secondary school that they were kind of the left-over girls […] I did feel that they were girls that kind of drifted together because they weren’t in any other group (FP03)
Conflict within relationships was mentioned by several of the females we spoke to.
I was fed up of like getting into almost fights with people and losing my friends and alienating myself (FF17)
Maintenance of friendships was also highlighted as a problem.
I don’t think I have difficulty making friendships, it’s keeping them maybe (FF18)
The difficulties faced with friendships and fitting in with peers often led to feelings of loneliness.
Sometimes I just feel a bit sort of rejected, I do feel lonely (FF16)
It took months for me to finally get a group of friends, I remember at some points feeling depressed and totally lonely (FF04).
All the participants who discussed friendship felt as though they did want friends, and social motivation was a key theme, with all the women and girls demonstrating some desire to have friendships or social contact; however, the females commented that difficulties in social interaction made friendship building difficult.
she desperately would like to have friends and have friends invite her out and do things with her but they don’t (FP04)
I wanted to join in but I wasn’t sure how (FF02)
Subtheme 1.2: Living in a Neurotypical World
Difficulties with social interaction may also lead to problems in day to day life. Individuals with autism are required to live in a neurotypical world where ordinary life is often not tailored to help with problems with social interaction. Several participants commented on the difficulties they face with trying to cope in neurotypical situations, with one mother saying that, although her daughter has several positive qualities, struggling with the norm was exhausting.
She, when she’s doing her job she’s a very professional lady, but ordinary things, ordinary life exhausts her. She is exhausted just by the business of running an ordinary life (FP03)
The concept of coping with “normal” life being exhausting was mentioned by almost all the women and girls. It was highlighted that autistic females are required to adapt their thinking styles to suit the “norm” and cope with the neurotypical world.
You have a different way of viewing things and a different way of doing things which can make it harder (FF07)
The women interviewed shared a variety of different problems faced due to their autism; however, it was felt by numerous participants that if the neurotypical world had a greater understanding of autism, the problems would be almost eliminated.
If we had an understanding in society, if people respected differences and neurodiversity it wouldn’t be a problem, it really wouldn’t (FF18)
I think people need to you know, talk about it really so you know people can understand and appreciate it, you know they don’t […] people like don’t hold the person’s differences against them they can […] celebrate you know their differences (FF03)
However, one woman felt it is important to remember the unique experience everyone has.
Every girl has a completely different experience with autism (FF05)
Subtheme 1.3: The Concept of Gender
Within society, not just within the autism community, the participants stated that females are pressured to be more social than males, however with the added difficulties of being an individual with autism these social pressures are amplified.
There’s a lot more pressure on girls to be a certain way just in general but I think that especially affects girls on the autistic spectrum because we are more different anyway so it’s more difficult for us to be just the same as everyone else (FF13)
You have all the problems of being on the spectrum and then also all the problems of trying to be a woman on the spectrum, so trying to feel like a normal, um, woman I guess (FF10)
The difference in communication style between men and women was also discussed frequently in the discussions. It seemed that the women we interviewed felt that, in general or stereotypically, both autistic and neurotypical males and females have different styles of communication.
Like socially women just kind of like, gather round and talk and or watch things and chat and gossip, and I, I just don’t really get gossip, gossip doesn’t, I don’t know why it exists, why you do it kind of thing, but, so I always kind of I always got on with boys or men better (FF01)
Women socialise by mimicking and guys socialise by just being themselves […] if you are sort of just a little bit different you get sort of estranged from everyone (FF13)
The participants stated that as a female it was more difficult to be accepted by peers of the same gender than it was for males.
I think it’s harder, much harder as a girl because girl peers are less forgiving of other girls. The girls seem to be very tolerant of the boys with autism and almost mother them (FP04)
An alternative view was proposed by one participant, who suggested that differences are individual and not necessarily related to gender.
I guess no two people are the same are they, whether they’re male or female or both female or both male (FF15)
However, the large majority (all but one) felt there were differences between autistic males and females. It was consistently suggested that autistic males feel less pressure to mask or camouflage their symptoms, and that females were more successful at doing so.
Boys are more content to be themselves and it’s like this is how I am, whereas the girls really want to fit in, um, and I think that makes them unhappier (FP04)
I think with males, they never have this um, it’s like what I get down about is feeling like I should have to interact, and they’re more happy to say like, no I wanna do my own thing (FF01)
Two women also commented that these gender differences in masking may contribute to the different rates of females compared to males being diagnosed with autism.
I think that’s kind of the main difference that girls are just better at hiding their autism and yeah that’s probably why people […] that’s probably why people think it’s more guys who get autism because with boys it’s more obvious however girls like maybe it’s like they can just go under the radar so maybe that’s why people don’t think girls with autism exists […] or why it can take longer to get a diagnosis because again they’re just better at hiding their autism, they’re just better at masking (FF05)
It’s almost like if you put me in a room with 100 different men and some of them are autistic I would probably be able to point out which ones are autistic quite easily whereas with women it wouldn’t be that obvious (FF18)
An additional societal pressure felt by some of the women and girls we interviewed was the concept of gender itself. Gender norms are a binary cultural concept that some chose not to conform to.
gender norms, and stuff like that confuse me (FF10)
One mother stated that her daughter finds it difficult to adopt the idea of being feminine.
She chooses to wear masculine clothes because it’s so much simpler, she doesn’t then have to worry about the intricacies of make-up and things, so I think femininity is a big issue (FP03)
Two other females commented that they felt they didn’t relate to their own gender.
How kind of girls socialise, I never really related to (FF10)
I’m no good at being a girl (FF02)
Overall, the participants highlighted several gender differences and problems associated with these difficulties from the perspective of autistic females and parents.
Subtheme 1.4: Coping Strategies
This sub-theme identifies techniques adopted by the women to cope with their disorder. A range of specific coping strategies were mentioned by the women and girls spoken to, however three prominent mechanisms emerged.
Firstly, nearly all the participants stated that they need time alone so as not to become overwhelmed.
Both at school and at home I try to spend as much time alone as I can cause it really does like it gets me in a very calm state of mind so that when I do need to interact with people I’m willing to talk and socialise and stuff (FF05)
Secondly, the need for routine was commonly discussed.
Structure’s very important so if something like didn’t quite go to plan it would cause a bit, it would like throw me out of sync and I wouldn’t like it (FF03)
Thirdly, problems in terms of coping with “normal” everyday situations led onto the idea of masking and camouflaging autistic behaviour to fit in with a neurotypical world and disguise social interaction difficulties. All except three females reported that they camouflaged their autism symptoms.
Girls are really good at, you know, masking and hiding their autism so that it’s harder to identify an autistic girl that you know needs help with the world (FF05)
The three participants who did not report camouflaging their autism symptoms stated that they felt unable to do so as their autistic behaviour was too obvious to others.
I don’t think I have ever had to mask my autism […] I don’t think I could if I tried, I’m crazy all the way (FF07)
Camouflaged… err I’m not entirely sure that’s possible […] even if I tried it wouldn’t work or […] people would sense something quite off maybe (FF04)
Both the autistic women and girls and the mothers of autistic girls commented that neurotypical behaviour was consciously learned, for example, eye contact, in order to fit in and disguise autistic behaviour.
I didn’t want anything more than just to be normal and to fit in so I, really, really tried and I kept you know imitating and copying and making myself look and appear as normal as I could, but yeah I guess it was almost like a special interest (FF10)
The socialising bit because I was so scared, because I didn’t know what to do, so everything I had to learn by observing (FF18)
You’ve probably noticed she makes eye contact but it’s, it’s a bit clunky you know, but she’s learnt to do that (FP04)
Such masking behaviour can have implications. For example, masking behaviour during diagnostic discussions contributes to misdiagnoses and missed diagnoses.
And then you said that there’s a problem and they don’t believe you because you look fine (FF02)
The problem I’ve found is when I’m in social situations I sort of go onto auto-pilot […] and I’m kind of like polite and very British you know and so I found that in the [diagnostic] interview I was acting you know like nothing was wrong which was obviously the worst thing to do (FF13)
Although learning neurotypical behaviours may allow individuals with autism to appear “normal”, it was evident that behind the masks the women were still struggling; several commented on the immense effort it takes to maintain such behaviours.
It’s kind of like a duck on water you know it’s calm on the surface but sort of paddling really hard underneath (FF13)
Whether the females we interviewed felt they masked their autistic behaviours or not, all women and girls commented on the struggles they experienced whilst trying to fit in with a neurotypical world.
Theme 2: Potential Obstacles for Autistic Women and Girls
This theme uncovers the barriers and difficulties faced by the women and girls. The majority of the females we spoke to had already gained a diagnosis of autism for themselves or their daughters. They discussed the difficulties they faced when trying to get a diagnosis and problems faced in terms of support after the diagnosis was received.
Subtheme 2.1: The Struggle of Getting a Diagnosis
Two of the women we spoke to had not yet received a diagnosis and were unsure whether they would pursue one as they had heard of others’ bad experiences. These negative experiences were reflected by the majority of the women who had been diagnosed as adults.
We headed to the nearest café and cried, cried, cried for a day; […] it was the most awful, awful experience (FP03)
It was quite a drawn-out process and quite a pain in the arse to be perfectly honest (FF13)
Despite some reports of a negative diagnostic process, many participants stated they felt relief after receiving a diagnosis.
Once I had the label that I had, I’m like yay, I’m not so crazy after all, I’m not this weird crazy person, I do fit in somewhere (FF17)
Participants reported feeling as if they understood why they had felt different, that they were relieved it was not a problem they had caused, and that they were not alone.
Fewer females are diagnosed with autism than males, and the woman and girls we spoke to suggested that this discrepancy may be due to the tools used and the design of the diagnostic process. These quotes are connected closely to the previously mentioned subtheme “masking & camouflaging”.
Girls are really good at you know, masking, and hiding their autism so that it’s harder to identify an autistic girl that you know needs help with the world (FF05)
That’s the trouble with female ASD is in that time slot of whether they’re going to say yes or no to your diagnosis you could be performing or camouflaging so well that they’re not going to see that (FF01)
The participants suggested that females are able to disguise their autism symptoms which can mean clinicians often mis-diagnosed or completely missed diagnoses.
When I actually got tested I was on autopilot and it meant that I got misdiagnosed (FF13)
Subtheme 2.2: Lack of Appropriate Support
Once a diagnosis was given, one woman reported that there was no after-care, or support given.
The people handling it were you know fine, were lovely, they listened and stuff but afterwards there wasn’t really any support (FF10)
Two women reported that they experienced poor support in schools, being named a “naughty child” (FF11) or a “slow learner” (FF16). One woman felt cheated by the lack of support given.
She now feels very cheated because she feels she should have had specific help, she now knows there was help she could have had that would have made her life easier (FP03)
Theme 3: Negative Aspects of Autism
This theme explores the difficulties faced by the women and girls that are associated with having autism. Within the discussions, additional problems were discussed that, while related, did not directly involve the core diagnostic features of autism.
Subtheme 3.1: Co-morbid Conditions
Sixteen out of the eighteen females suffered from co-morbid conditions. Often, the women and girls had been suffering from conditions such as anxiety, OCD and depression for many years.
My depression started about 19 […] I’ve had that quite a number of years; too long (FF16)
I remember the anxiety, always the anxiety, always… being in class and thinking I know the answer but please don’t ask me (FF18)
Two women also discussed how they felt they had been misdiagnosed with a co-morbid condition instead of their autism.
I was diagnosed with depression briefly but that was obviously the Asperger’s before and so I did, I was treated for that (FF17)
So, I was really, really good at covering up my, what I thought was anxiety and social anxiety (FF10)
Often, it was these co-morbid conditions that caused the main problems in the females’ lives.
I always say I would never change anything but if I could change something it’d be the obsessive compulsive because I can see it tires her out (FP02)
I think probably the anxiety that stems from it, more than anything else […] I’ve missed out on a lot of opportunity because of like fear (FF10)
Subtheme 3.2: Sensory Sensitivities
Apart from co-morbid mental health conditions, sensory sensitivities were reported to play a large role in eleven of the eighteen females’ everyday lives. These sensory issues ranged from the dislike of loud noises, to powerful cross-modal effects.
When she was younger, if I had lilies in the house she’d almost go deaf…. it was like the sensory overload made something else shut down (FP04)
Although largely problematic, some sensory hyper-sensitivities were reported to be a positive experience.
I have the sensory thing as well, like music for me I feel like more intensely than other people I think; to put headphones in is almost more euphoric than a lot of people would experience (FF01)
The majority of females we spoke to, however, found sensory stimulation overwhelming and debilitating, with eight participants stating that they considered their sensory issues the most debilitating aspect of their lives.
The sensory issues are just, it’s the most difficult thing in the world and it’s so distressing and it really does make a difference between, I think, um having life quality or not for me (FF18)
Subtheme 3.3: Meltdowns and Shutdowns
In reaction to overwhelming emotional and sensory situations, several women and girls reported experiencing what they called “meltdowns” and “shutdowns”.
So, shutdown I associate with myself just going like really quiet, I don’t want to interact, um, a meltdown will be like really tearful, upset, angry, distressed, um it’s kind of cathartic to me sometimes (FF01)
As she got older she would, I can’t explain it any other way, close her face, literally shutdown and if, if confronted, that would lead to, you know, bad tempers, and throwing things, not meltdowns but tempers, you have to wait ‘til it came out (FP03)
Often the women/girls labelled these experiences as “overloads” (FF17).
Subtheme 3.4: Dependence/Vulnerability
The females often discussed feelings of vulnerability and dependence. One woman stated that she was jealous of other students in her class who did not need the help she needed. However, the most common mention of vulnerability was in terms of sexual relationships.
I was kind of naïve or gullible… towards people and they would take advantage or something like that (FF01)
You have to try and think a little bit more carefully when you’re around other people and other men, and… cause sometimes you give out the wrong body signals and people pick it up wrongly (FF16)
Subtheme 3.5: Feeling Different
Participants often commented on their feelings of being different to those around them from a young age.
Very different to most people, or as I like to put it, I’m prey in the world of predators (FF07)
I knew that I was different, all, always knew I was different, always I knew it, in so many ways that it’s just unbelievable (FF18)
It was often reported that the women and girls were frustrated because despite feeling that they were different in some way, they did not understand it themselves and were often misunderstood by others.
I thought I was naughty, I just felt I was very different to other children […] in how my brain processed things, I think, and how I couldn’t do what other children could do (FF11)
I knew at some stage that I was different but never really knew or understood it (FF16)
Some individuals found it frustrating and disliked feeling different from other people.
It’s frustrating for yourself if you don’t know, you know there’s something wrong with you but you don’t know what it is (FF16)
I wish I didn’t have the ASD and I wish I could just do what normal people do um, and it, I find it really hard to live with every day (FF11)
One individual reinforced that, although they might feel different, they did not feel that they were inadequate.
It’s just being different it’s not being less or anything so (FF18)
The women also noted problems they had in terms of social interaction and how frustration with not being able to understand neurotypical interaction could arise.
I certainly remember wondering, feeling like normal people have telepath-, the ability to sort of telepathy, like telling each other in their minds what they had broadcast a telepathic message saying let’s kick this friendship off by going to my house and having a party or something and I’m and it’s like I’m not telepathic, I can’t pick up any telepathic messages (FF04)
It kind of feels like you’re an outsider looking in and like there’s this world that you’re just kind of observing from the outside and when you have to get directly involved in it, it can be a bit hard sometimes (FF05)
The intricacies of social interaction can be difficult to learn and understand. Several participants commented on specific problems including not understanding humour, not knowing when to join or add to a conversation, concerns about coming across as rude, and lack of interest in “small talk”. Many women and girls commented that they preferred acting as a “wall flower” or sitting with adults when they were children, as they found social interaction easier that way. Interestingly, one woman commented that although she preferred not to socialise much, it wasn’t the socialising that troubled her, it was the lack of understanding around social interaction.
It wasn’t the socialising that scared me it was not knowing how to do it so (FF18)
Both parents and the females themselves commented on other people’s awareness, or lack of it, concerning autism.
From birth she was quite plainly different, but I hadn’t had any experience to base anything on until I started to study it myself (FP03)
Several females explicitly stated that they believed other people could notice their autism. However, the parents who commented on noticing their daughter being different said that either they had felt they were doing something wrong to cause their daughter to act differently, or they had thought their child was unique and the differences were not a problem. Two women with autism stated that their parents did not believe either the women themselves, or “in autism”.
Subtheme 3.6: Additional Problems
A range of other negative aspects of life with autism were reported, which did not fit into sensory issues or co-morbid conditions. Two participants commented that they have a bad memory and felt it was related to their autism.
That’s the disadvantage of my autism, I have a terrible memory (FF07)
Three women also commented that puberty and sexual relationships were difficult aspects of their lives.
Puberty, and periods, and relationships and sex and all that kind of stuff, that was incredibly difficult growing up (FF01)
Theme 4: The Perspective of Others
This theme considers how other people, including peers and family members, understand and are impacted by autism. From speaking to mothers of autistic girls, we were able to gain information on the impact autism has on the wider family, not just the individual themselves. The mothers spoke of feeling isolated, family breakdown and narrowed social lives. Two of the autistic females we spoke to also gave insight into running their own families. One stated that being a mother is more important to them than being a autistic woman.
Subtheme 4.1: Girls can be Autistic Too!
The mothers, woman and girls interviewed were very passionate about a need for greater understanding of autism, and in particular autism in females. The lack of understanding of autism in the general population has caused problems for the families interviewed.
It’s almost like, um, it would be contagious or something like that, it’s like ‘keep my children away!’ (FP04)
It feels difficult like other people don’t really understand your needs, so like I’d be having a breakdown in the middle of Costa and people would be like pulling their children away and it’s like they don’t understand, they just think I’m a naughty child (FF06)
Although research is improving in the field of autism, one female expressed the need for a greater understanding of girls with autism.
I think it would be nice for people to realise that autism can affect girls (FF12)
Subtheme 4.2: Parental Attitudes
Mothers of autistic girls discussed their personal feelings towards having a child with autism. One mother commented on the concern they felt about their child achieving the life they anticipated for them.
You grieve for the child that you didn’t know you thought you had…will she ever get married; will she ever go to university… (FP04)
Theme 5: Positive Aspects of Autism
This theme highlights some of the benefits of being autistic and ways females have learnt to understand their disorder. Not all aspects of having autism are negative, as reported by our participants.
Subtheme 5.1: Benefits of Autism
A common positive of having autism mentioned in the discussions was being able to see the world from a different and unique perspective.
I’m starting to appreciate more and more that like the way I see the world is, can be a benefit (FF10)
I’m unique in my own way that makes me feel that I am a unique part of the world (FF07)
Other benefits of having autism ranged from having long attention spans and good memory, to having an improved sense of empathy and greater creativity. Only one woman we asked was unable to think of a positive aspect of having autism.
Subtheme 5.2: Accepting Autism and Understanding Why You’re Different
Importantly, some participants mentioned that having autism is not a definitive feature of an individual’s life.
I know that I am different, and I don’t think it matters to anybody else if I am different because I don’t think autism is a way to define a person, it’s more the way they act, and how they feel (FF07)
Subtheme 5.3: Strong Sense of Justice
Interestingly, several females and parents commented on autistic females having a strong sense of justice.
It’s wonderful that she has this fantastic moral compass and she always wants to stick up for people because she’s had problems and she’s been bullied and she wants to stick up for everyone, but the way in which she wants to do it puts herself at a risk… (FP02)
The need to stand up for those who cannot stand up for themselves was a recurrent theme.