(SD)
Range
AQ-10, Autism Spectrum Quotient; WHOQoL: World Health Organization Quality of Life short version; ASQoL: Autism Spectrum Quality of Life.
A one-way ANOVA revealed there were significant main effects of diagnostic stage group on the following measures from the WHOQoL-BREF Table 3 : satisfaction with health (F(2) = 4.56, p = .013), psychological health (F(2) = 9.39, p < .001), and environmental health (F(2) = 4.58, p = .013). The patterns of these effects are seen in Figure 1 . There were no significant main effects of diagnostic stage group on overall quality of life, physical health, or social relationships satisfaction. The one-way ANOVA also revealed a significant main effect of diagnostic stage group on total WHOQoL score (F(2) = 5.52, p = .005). Follow-up analysis using the Bonferroni test showed that the mean scores for satisfaction with health increased with each diagnostic stage, whereas the mean scores for psychological health, environmental health, and total WHOQoL score were highest in Group 2, followed by Group 3, with Group 1 having the lowest mean scores ( Figure 1 ). In the Autism Spectrum Quality of Life (ASQoL), a one-way ANOVA revealed no significant main effect of diagnostic stage group on overall score or autistic identity score.
Descriptive statistics for WHOQoL and ASQoL measures by diagnostic stage group.
Diagnostic stage group | M (SD) | |||
---|---|---|---|---|
1 | 2 | 3 | ||
WHOQoL | Total WHOQoL | 197.56 (54.03) | 237.65 (37.17) | 211.25 (40.39) |
Satisfaction with health | 2.62 (.98) | 3.09 (.95) | 3.28 (.91) | |
Psychological health | 36.82 (20.11) | 55.07 (14.10) | 39.24 (13.92) | |
Environmental health | 56.17 (14.65) | 67.12 (12.50) | 61.03 (13.35) | |
Overall QoL | 3.62 (.86) | 3.83 (.58) | 3.44 (.74) | |
Physical health | 49.90 (14.98) | 57.45 (11.19) | 54.96 (14.52) | |
Social relationship satisfaction | 48.42 (19.72) | 51.09 (18.69) | 49.31 (17.29) | |
ASQoL | Total ASQoL | 2.93 (.58) | 3.12 (.43) | 2.81 (.57) |
Autistic identity | 3.70 (1.12) | 3.7 (1.30) | 3.83 (1.18) |
WHOQoL: World Health Organization Quality of Life short version; ASQoL: Autism Spectrum Quality of Life.
The patterns of effect across groups: (a) satisfaction with health, (b) psychological health, (c) environmental health, and (d) total score.
The overarching theme of validation was developed with four subthemes: Don’t forget I’m autistic, What now?, Having to be the professional , and No one saw me . Additional supporting quotes for each subtheme can be found in the Supplementary Materials . The quotes are drawn from the transcripts of participants, and each quote is labelled with a participant number (PXX), and the diagnostic group they are in (Group X).
The majority of participants saw diagnosis as a validation of their identity, which in turn positively impacted their well-being. Having a stronger identity as an autistic woman was reported to lead to an improvement in well-being for these women as they were able to make adjustments to their environment and day-to-day life without feeling wrong or guilty about doing so. This supports the questionnaire data which suggest that psychological and environmental well-being may improve with diagnosis compared to without diagnosis. Stereotypes were seen as a barrier to diagnosis, and to validation, with some participants reporting ‘imposter syndrome’ and worsened well-being due to not fitting the stereotypical image of autistic males:
My idea of autism was Rain Man, it was the little boy with trains and maths and so on, and I think probably as most people’s idea at the moment. (P13, Group 2)
Others had doubts that they were ‘being silly’ or ‘making it up’ due to feeling they had previously been gaslit by, or lacked validation from, healthcare professionals. Diagnosis was also seen as validation for these women as it allowed them to access support; prior to diagnosis, they did not have ‘a piece of paper’ which validated them as autistic, meaning access to support was far more limited (if not impossible). Gaining this validation removed these doubts and improved their well-being through confirming their sense of themselves as autistic:
I went to my GP, and I didn’t really know what say, but I just knew something wasn’t OK, and something needed to stop, and . . . he started off saying, because I go to work every day, that means everything’s fine and to me that wasn’t really true, and I think maybe because of my autism, I found it really hard to not go to work every day . . . (P22, Group 3) I guess for me it’s [diagnosis] that kind of validation I’m after of this identity that I found for myself, I kind of feel like I want it, I want it to feel sort of more legitimate if that makes sense. (P08, Group 1)
However, some participants reported feeling they did not need a diagnosis, or that they had had these feelings previously, but that they felt validated by exploring their identity more and interacting with the autistic community on social media. Interaction with the autistic community was a validating experience for many of the participants, and improved their well-being, especially prior to their diagnosis, as they felt less alone in their experiences:
I’ve spoken to you know couple of late diagnosed women who said, ‘well, we lived, we lived our lives up until this point, like we, like we fought quite a lot, like you know we’ve gone against you know, all these kind of odds, and we’re here like you know how awesome are we’, and it’s like actually yeah and it’s just so positive, I think, and I think that really helps in the self-identification because you don’t you know want to identify with anything you know too negative. (P01, Group 1)
While interacting with other autistic people helped to create a positive connection with autistic identity, some participants in Groups 1 and 2 were undermined by the deficit-based model of psychiatric assessment, and this reduced their well-being due to having to work to find ways to refocus their identity away from only negatives presented in traditional clinical narratives:
When I got my report back from my diagnostic process and that was like literally 15 pages of deficits, and I felt really low for a couple of days after that, and I had to kind of really consciously kind of re-find the positivity. (P13, Group 2)
Validation also came for some participants in the form of understanding themselves and their experiences; participants reported that having an autistic identity or diagnosis allowed them to be kinder and more accepting towards themselves and their difficulties. Furthermore, in regard to stereotypes, many participants also reported the diagnosis to be validating as it relieved their feelings of failing as a ‘stereotypical woman’:
. . . before I just felt like I was a crumbling mess and I just needed to pull myself together, and I don’t have that voice myself anymore either you know telling myself oh I should be, should be doing better or I should be stronger and tougher and just sort of except like I’m going to cry over really stupid things. (P17, Group 3)
The extent to which participants felt the diagnostic process and any subsequent support services were autism-friendly varied across our participants: some participants described themselves as having traits which they felt were forgotten or ignored even by those who they had disclosed their autistic identity/diagnosis to:
she sort of repeatedly said things that indicated that she didn’t mind if I behaved odd and she said, that was her thinking that she was being welcoming and inclusive; I don’t mind if you’re uncomfortable, I don’t mind if you look weird because you’re uncomfortable, that’s fine you be weird I’m not going to change anything, because I know I’m absolutely fine. (P23, Group 3)
Others noted instances where they felt particularly welcomed as an autistic person:
. . . it was just like ‘Oh, they really understand my needs’ because they had photos and biographies of everyone you were likely to meet, they had photos of all of their consulting rooms, a map, a photo of the outside of the building, so it was as if they anticipated all of the things that were likely to worry me. (P13, Group 2)
Some things described by participants reflected the interaction between autistic traits and diagnostic experiences. For example, feeling the need for ‘definitive’ validation of their identity by a professional, which could be linked to having inflexible thinking styles. When this was not made clear by the professional, this led to confusion around their autistic identity, which had a negative impact on well-being.
The wording was something like you know she meets the criteria for a positive diagnosis, should this be something that she wants, you know, so it was and I, and I talked about this at length with the psychologist like over the following couple of years, because I thought I felt uncomfortable about this idea of it was my choice . . . I’d sort of seen the diagnostic process as kind of drawing a line under that and going, you are, or you aren’t. (P15, Group 3)
Equally, finding it difficult to adapt to having a new identity as ‘confirmed’ autistic may be linked to dislike of change and intolerance of uncertainty, such as around how people will react to this information:
It’s kind of a bit of a struggle, there’s a lot of anxiety and there’s a lot of uncertainty as to how I’m going to navigate the world with this new identity. (P09, Group 2)
Furthermore, participants reported the impact of masking on their recognition, diagnosis, and validation; participants told us of the difficulties they faced with assessments due to facing the dilemma of having to ‘unmask’ to be diagnosed, which at times felt impossible due to how intertwined their true persona had become with their mask, or they would continue to mask, and the assessor would not recognize their autistic traits:
I sort of anticipate that because I’ve gotten fairly good at sort of presenting myself as a somewhat articulate and competent adult, that I’m not going to be taken seriously, and I’m not going to be able to convince people of the struggles that I do have. It feels like quite a scary thing. (P08, Group 1)
Further barriers and positive factors when seeking support for autistic women were reported around communication and practicalities: especially since due to COVID healthcare in the United Kingdom was moved to phone and video call appointments. This brought some benefits as women did not have to travel and negotiate public transport to attend appointments. However, for many of the participants, appointments became inaccessible, or access was restricted due to anxieties and difficulties in communicating when using the phone or video call. This negatively impacted their well-being, both psychologically and in some cases physically, as access to care was more difficult:
Video chatting like this, I find okay, but like on the phone I really struggled with and it kind of felt like because you couldn’t get, see anyone face to face, it was like I then couldn’t even talk on the phone because I, that was like a barrier for me. (P24, Group 3)
Participants from all groups discussed the long waiting times (6 months to more than 3 years) between referral and assessment, especially for those undergoing assessment through the NHS. For some, this gave them time to learn about autism and work out what being autistic meant to them, but overall, delays were linked to worse well-being for participants:
I don’t feel valid [to ask for support] because I haven’t got the formal label diagnosis and stuff and a lot of the time when you say I’m awaiting diagnosis it’s like ‘no, you need formal diagnosis’ and it’s like I can’t get that yet – that’s a nightmare. (P06, Group 1)
In addition, participants from all groups reported a lack of clarity in the diagnostic and support pathways for autistic adult women. Many participants felt like there was no clear pathway for them to follow from initially thinking about being autistic to discussions with a GP, and onto diagnosis, and that even post-diagnosis there was a lack of clarity as to where they could access support, if any:
I got diagnosed and then I had like one post-diagnostic session . . . It would have just been nice I don’t know just to, like I don’t know I felt like I was diagnosed and then like waved off on my way as, like it’d be nice if I could have just had like a couple more sessions, just like talk it through and just like dunno, process it with somebody. (P14, Group 3)
Furthermore, participants reported that even though there were many positives to identifying or being diagnosed as autistic, the experience of going back over old memories and past experiences with a new ‘autistic lens’, both pre- and post-diagnosis, was a traumatic one. Several participants discussed feeling the need to ‘unpack their past’ and that this had to be done without support. This depicts the participants’ feelings that there is not a smooth journey after identifying/diagnosis, it is not simply a matter of ‘taking off the mask’ and moving on with life as an autistic woman, but that there is still work to be done and that the experience can be traumatic and positive. For some participants, post-diagnostic support with other autistic people was helpful to combat some of these negative effects of the diagnostic process:
So, yes diagnosis: useless, in fact damaging. But the group, post-diagnosis group: brilliant, can’t recommend it enough, I think that should be mandatory, you don’t just spin people off and leave them with this bit of paper that may or may not be accurate. (P12, Group 2)
Relating to the statistical results, participants from Groups 1 and 3 reported a feeling of growing into their identity, unlike Group 2. This could suggest one reason behind the pattern seen in the psychological well-being graph, whereby during pre-diagnosis waiting or while beginning to self-identify, there is still a feeling of uncertainty which lowers well-being, then when a diagnosis is gained there is a lot of optimism, and participants feel they have found their identity, but as time passes the women feel that they still are growing into their identity, which links with the reports of unpacking and going through traumatic experiences due to that come from Group 3.
Many of the women reported having to do their own research to learn about autism, where to get support, where and how to seek a referral for diagnosis, and their rights. Some people report enjoying aspects of this research and learning about autism more generally; however, this theme encompasses the more negative reports of having to do research due to professionals lacking knowledge:
Yeah, so basically, I went to the doctors and I’d already researched a national autism website like how you should go to the doctors, so I printed off all the information because, like I also know that I’m quite a competent, I can come over as quite a competent person, so I printed off all of the information and took it to the doctors and said ‘I want to have it, an assessment for autism, this is all the reasons why this is the information from National Autistic Society, this is how you should refer me’, so I even told them like what my local area’s process was and, and then she said okay I’ll refer you on to the next step. (P11, Group 2) it feels very much like the onus is on you as an individual to make the assessment happen, rather than a medical practitioner saying ‘this is something that we should see’ or we should, you know just anything any kind of update, or any kind of knowledge that they sent you on a referral and you’ve not heard anything back. (P03, Group 1)
Furthermore, participants from Groups 1 and 3 reported feeling a need to educate the wider population and be ‘a professional’ in the field in this sense too, due to feeling a lack of understanding and that there is still discrimination against autistic individuals. This led to reports of not wanting to disclose or share their identity for some of the participants:
When I interviewed for a job, I didn’t tell them because I was worried that it would impact on that, and I kind of wish I had told them . . . I think it might have helped me with better support, but at the same time, I was just so worried about like being turned down for it because I went for a volunteer job once and put on that I was on the autistic spectrum and I got turned down, and I do think it was because of that. So, sometimes when I’m comfortable with people I tell them that I’ve got the diagnosis, and then like in job interviews I won’t tell them until it’s like needed, they need to know. (P24, Group 3)
This reluctance could help to explain the survey results seen in the psychological and environmental health categories; that Groups 1 may struggle more with feelings of needing to educate others due to beginning to consider autism, and Group 3 due to being diagnosed for some time, and their struggles around disclosure. In addition, those in Groups 1 and 3 reported a lack of follow-through on discussions with professionals, suggesting that support into getting into and out of the diagnostic process is when people feel they lack professional support, compared to directly when they are getting the diagnosis:
I think it would have been good to have signposting from one agency to another . . . but nobody ever said that, so I just had to like Google, I was asking my counsellor and asking all these other people, and it just, it’s so exhausting. (P01, Group 1)
In summary, most participants across the groups reported experiences of being disbelieved and dismissed by healthcare professionals, lacking support from healthcare professionals, and even when support was given that many professionals lacked knowledge of autism and how to support an autistic person:
I can do that a lot better than I used to. I’m sure, like the therapist would want to be like oh yeah that’s because of me, and you know or the psychiatrist, but I think honestly, I’ve done a lot of the work myself. (P17, Group 3)
The majority of women interviewed reported a lack of support throughout their life, from childhood through to adulthood, especially in school; many reported being bullied, not fitting in, not being supported as people thought there was ‘nothing wrong with them’ during their school years, and some specify that they believe school to be where they started masking. Some participants also reported that they slipped into the character of a ‘good girl’ at school as this is how they were labelled by teachers. Masking for many participants was described as the reason as to why no one ‘saw them’ and supported them, then or now, whether they were aware of it at the time or not:
I think it was definitely not picked up because I was a woman . . . I’m very high functioning, I think people think that I’m like making an excuse or I’m like making it up . . . I do feel a bit let down sort of for my whole adult life I’d been told that I was mentally ill and actually no that wasn’t the case I was perfectly healthy. (P04, Group 1)
In terms of visibility, many women reported a lack of autistic women portrayed in the media. However, when autistic women were seen in the media, this was beneficial to participants with several reporting this was how they first began identifying traits in themselves:
Everyone seems to have that kind of image of like the typical autistic person is like Sherlock Holmes or Sheldon Cooper, and if you don’t identify with that, you’re probably not autistic . . . it’s not actually, as you know, black and white as the media might make it out to be. (P09, Group 2)
Multiple participants reported that professionals who did understand or recognize were those with lived experiences of autism themselves (either being autistic themselves or having an autistic family member):
At the end, she told me she said, like I’m certain that you’re autistic and then she told me that her daughter is and she’s like you, like the way you are reminds me so much of her, so I think that’s why I felt understood by her. (P14, Group 3)
The aim of this study was to investigate autistic women’s diagnostic experiences in relation to their identity and well-being. Overall, our results suggest that diagnosis, identity, and well-being are closely interlinked. These results partially support other work showing interactions between diagnosis, identity, and well-being for autistic women, but importantly we highlight for the first time that these effects change throughout the diagnostic process: it is not the case that well-being automatically improves with time, but that validation through diagnosis, understanding, and acceptance impacts well-being and identity the most. Getting a diagnosis appears to improve the aspects of well-being and identity at the point of diagnosis through providing validation and the provision of some answers, but longer-term women can struggle with their identity as autistic and with accessing support, which is supported by the results of the quantitative questionnaires showing psychological and environmental health do not increase linearly along the diagnostic pathway. As all but one of our interview participants were diagnosed/seeking diagnosis in adulthood, this study mostly provides evidence for the impact of diagnosis on adult autistic women’s identity and well-being.
Many of the difficulties with diagnosis, identity, and well-being reported in this study surrounded the health and social care provided, or the lack thereof. This can be seen both in the interview data and in the low scores for health-related well-being from the online surveys. This supports other reports that clinicians involved in the diagnostic process are often not adequately trained or knowledgeable about autism in women. 5 Participants in this study reported that this leads to them feeling unseen and as though they must be the professional themselves, thereby risking the validation they are seeking – which negatively impacts well-being and identity.
As research has shown that many UK services fail to provide timely assessments, 20 it is unsurprising that waiting times were some of the most commonly reported barriers for the women in this study when seeking a diagnosis, and that these could lead women to seek a private assessment as they felt they needed the ‘answer’ sooner than the NHS could provide. The process for seeking and gaining and assessment in other countries in private or public services may differ to the United Kingdom; therefore it is important to bear in mind these results may not be generalizable across countries and services.
This project was the first to use mixed-methods approaches to provide evidence about the role of diagnosis in autistic women’s well-being. However, we note several limitations to the current work that will need to be addressed in future projects. Our statistical tests were conducted on a relatively small sample. Our sample was British women: this means that we are missing important experiences from women of other nationalities. Indeed, reports have shown that non-British black and Hispanic autistic children are diagnosed on average later that white autistic children 21 despite showing similar clinical profiles: 22 this suggests that non-Caucasian autistic people may similarly not fit an autism stereotype, leading to delays in referral and diagnosis. Non-Caucasian autistic women may thus be at double risk of being missed, due to their ethnicity and their gender. In addition, due to the methods of data collection, the study focused on the reflections of autistic women who were able to respond to a written questionnaire, and for the interviews were verbal. Therefore, the experiences and reflections of those who could not read, had a severe intellectual disability, or were non-verbal were missed. In future, research should aim to further this study to include non-binary individuals as non-conformity to a binary gender may further impact an individual’s sense of identity and need for validation.
Examining the extent to which participants felt they identified as autistic might be something for future research to consider: we did not include this in our quantitative study, but the extent to which individuals feel strongly connected to an autistic identity could vary, and the strength of this identity could have relationships to well-being. 23 Asking participants to quantify the strength of their identification and validation could also allow for studies to examine how these factors change over time: this study used a cross-sectional design but longitudinal work that follows women through their diagnostic journeys would also allow for future examination of how diagnosis impact identity and well-being over time.
Notwithstanding these limitations, our report has several implications for practice. First, reduced waiting times and clearer diagnostic pathways for autistic adults, especially women, are needed. Second, health care professionals should be mindful of the impact they can have on autistic women’s feelings of validation. For example, while it is common to write a diagnostic report that details the deficits individuals showed, which are used to confirm the presence of autism, several women found these reports to be discouraging.
This may be helped in part by our third recommendation, that greater post-diagnostic support is offered: this may help to mitigate some of the negative impacts of reading a diagnostic report that documents one’s shortcomings. We would recommend further work to examine when the timing of this post-diagnostic support is most suitable. A single post-diagnostic session to discuss diagnosis shortly after it is given may be too soon, and given that women’s well-being appears to peak shortly after diagnosis and then wane over time – a year or more after diagnosis – it may be suitable to consider whether support after a year could be offered. This could include some trauma focused 24 and identity building work.
Finally, training on the presentation of autism in women and girls for primary and secondary health care professionals is needed. Participants reported experiences of being told they were likely not autistic because they were working or because they had not been identified as autistic as a child: assumptions such as these need challenging, as it suggests health care professionals may assume that because autism is a lifelong disorder that all cases would have been detected in childhood. This misses the point that for some individuals, they are able to cope and mask their autistic difficulties into adulthood, when they nonetheless would benefit from diagnosis and support.
In conclusion, we found that autistic women’s well-being and identity interacted with the level of validation they felt of said identity by themselves and others, specifically healthcare professionals. Validation was seen to be associated with diagnosis for many of the women, suggesting initially that well-being and identity for autistic women are improved with diagnosis. However, well-being and identity were negatively impacted for autistic women due to a lack of support, both pre- and post-diagnosis, from health and social care professionals; long waiting times, lacking post-diagnosis care or support, and insufficient knowledge on the professionals’ part are reasons for this. Future work should aim to quantify autistic women’s feelings of validation and correlate these with quantified measures of autistic identity strength and well-being to explore this further.
Acknowledgments.
The authors thank the Laidlaw Foundation who sponsored Scholarship for MH and also thank the participants for sharing their experiences with them.
Supplemental material: Supplemental material for this article is available online.
Ethics approval and consent to participate: The project received ethical approval from the University of Bristol School of Education Ethics Committee. All participants gave fully informed consent to participate.
Consent for publication: All participants gave explicit consent for their data to be used in publications.
Author contribution(s): Miriam Harmens: Conceptualization; Data curation; Formal analysis; Methodology; Project administration; Visualization; Writing – original draft; Writing – review & editing.
Hannah Hobson: Conceptualization; Formal analysis; Funding acquisition; Methodology; Project administration; Supervision; Validation; Writing – original draft; Writing – review & editing.
Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: MH is funded by a Laidlaw scholarship.
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Availability of data and materials: Data and materials are available on request from FS ( [email protected] ) upon reasonable request.
Please note you do not have access to teaching notes, the presentation, recognition and diagnosis of autism in women and girls.
Advances in Autism
ISSN : 2056-3868
Article publication date: 11 March 2021
Issue publication date: 11 August 2021
Autistic women and girls have received comparatively less attention within clinical practice and research. Research suggests women tend to be diagnosed later than men, and are more likely to experience misdiagnosis.
This paper aims to report a narrative literature review that examines research on the presentation, recognition, and diagnosis of autistic women and girls.
Findings suggest that autistic females present differently to males and highlight low recognition of the female presentation of autism among the general public, in social spheres, educational, clinical and forensic settings. This lack of recognition appears to affect the likelihood of females being referred for diagnosis, the reliability of diagnostic assessments and subsequent access to support.
Recommendations for clinical practice focus on initiatives to increase awareness of the female presentation of autism, improving the diagnostic process for females, increasing female representation within autism training and for future research to support these goals.
Driver, B. and Chester, V. (2021), "The presentation, recognition and diagnosis of autism in women and girls", Advances in Autism , Vol. 7 No. 3, pp. 194-207. https://doi.org/10.1108/AIA-12-2019-0050
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What is autism.
Autism is a life-long neurological difference which means that autistic individuals experience and interact with the world differently to non-autistic people. These differences can result in various strengths and challenges.
Autism is best understood within the context of neurodiversity . This is the concept that the human brain shows a wide range of natural variance. Autism is a difference to be supported, rather than a disorder or impairment to be treated .
Autism is a spectrum, meaning that a person’s experience of autism is unique to them. You will not come across two autistic individuals who share exactly the same strengths and challenges. This means that each person may need different support, and to varying degrees.
Although autism affects everyone differently, there are shared areas of difference. You may come across different terminology to describe these, including the ‘triad of impairments’, a term coined following pioneering work by Dr Lorna Wing and Dr Judith Gould in the 1970s.
The main areas of difference are:
Our Autism Awareness in Education course is designed to help anyone who works in an education setting understand more about autism, and how to provide individualised, effective support to the autistic children and young people in their care. You may also be interested in our SEND in the Classroom course .
Autism is a condition that affects all genders. However, current research shows that the ratio of diagnosed autistic males to females is 1:3 (Loomes et al, 2017). Why is this the case? Does autism really affect more men than women? There is some debate as to whether the prevalence of autism differs, or if the lower numbers of autistic girls and women are due to other factors.
There have recently been some high-profile female celebrities who have received an autism diagnosis in adulthood – including television presenter, Melanie Sykes. The media attention of these cases is helping to further public awareness, as there is still much stereotyping within media representations of autistic people (usually white, male individuals with genius capabilities, which does not reflect the breadth of autistic experience).
There are a number of factors that could help explain why autistic girls and women are less likely to be diagnosed:
It appears that women are under-diagnosed when it comes to autism. In the past, it’s been suggested that the behavioural characteristics of autistic females vary greatly compared to those of autistic men.
However, as highlighted by the Autistic Girls Network, rather than thinking in gendered terms, it can be more useful to think in terms of external and internal presentations . Females are more likely to exhibit an internal presentation, but so do some autistic males and non-binary individuals.
The fact that females are more likely to receive a diagnosis later in childhood or into adulthood, or receive a different initial diagnosis, may be down to autistic traits being overlooked or missed due to an internal presentation.
If you are supporting an autistic person, as an education professional or otherwise, it is useful to be aware of what to look out for. Signs of an internal presentation of autism, most commonly seen in females, might include the following behaviours or traits:
This is not an exhaustive list, and the autistic experience will be different for each individual, who will have their own unique profile of strengths and challenges. Our Autism Awareness in Education training can also offer a more in-depth consideration of how shared areas of difference may impact autistic children and young people in general.
Females often receive other diagnoses before they are recognised as autistic. This includes mental health conditions, such as anxiety or depression, which could be linked to the effects of sustained masking, high levels of anxiety, and not understanding their own differences. It is also likely that individuals who present in an internal way are more likely to internalise problems too which can damage their mental health.
Securing an early diagnosis is a key priority of the UK government’s Autism Strategy 2021-2026 in order to ensure that autistic people receive effective support, and outcomes are improved. As we have seen, in the case of autistic females (and those with an internal presentation) that early diagnosis is currently less likely to happen. Therefore it is essential that education professionals, and the public in general, increase their understanding of autism, and what it means to be autistic. A wider knowledge of how autistic traits may present will help to ensure that individuals are not overlooked and that effective, individualised support can be put in place.
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Compared to males, females are at a much greater likelihood of receiving a later diagnosis of autism, which impacts their opportunity to receive early support. To assist with early identification, this systematic literature review aimed to ascertain whether females differ from males in the early childhood signs of autism. The small number of heterogeneous studies made it difficult to draw conclusions, although it appears that females and males under 6 years of age are more similar than different in terms of their expression of autistic behaviours. Given the discrepant sex/gender ratio in autism, these findings highlight the importance of exploring whether there are different and/or specific, not yet identified, early signs of autism in females and males.
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Autism spectrum disorder (ASD; referred to as ‘autism’ hereafter) is a heterogeneous neurodevelopmental disorder characterised by the early developmental onset of persistent differences and/or difficulties in social communication and interaction, and the presence of restricted, repetitive patterns of behaviour and/or interests (American Psychiatric Association, 2022 ). The prevalence of autism is estimated to be one in 44 children (Maenner et al., 2021 ), with approximately four males to every female receiving a diagnosis of autism (Fombonne, 2009 ; Maenner et al., 2021 ). When synthesising population-based/non-referred samples, however, a recent meta-analysis found the male-to-female ratio was closer to three males to every female (Loomes et al., 2017 ). Such findings suggest that a diagnostic sex/gender Footnote 1 , bias exists, resulting in some autistic females Footnote 2 going undiagnosed (Dworzynski et al., 2012 ), misdiagnosed (Kentrou et al., 2019 ; Kirkovski et al., 2013 ), or diagnosed later in life compared to males (Begeer et al., 2013 ; Giarelli et al., 2010 ; Rivet & Matson, 2011 ).
Several theories have been proposed to better understand the nature of this diagnostic sex/gender bias. Due to the underrepresentation of females in both research and clinical practice, one hypothesis is that our conceptualisation of autism and the development of diagnostic criteria and assessment tools is based upon the ‘male’ presentation (Kopp & Gillberg, 1992 ; Kreiser & White, 2014 ). Additionally, many females are not referred for autism assessments until later in life, as their differences may not be attributed to autism due to it being recognised as a ‘male’ condition (Bargiela et al., 2016 ; Whitlock et al., 2020 ). A second hypothesis is the ‘female protective effect’ which proposes that autistic females are genetically shielded against autism (Robinson et al., 2013 ). There is also emerging evidence to suggest that some females present with a different phenotype of autism to males (Hull et al., 2020 ; Kirkovski et al., 2013 ; Wilson et al., 2016 ). The female autism phenotype is thought to be characterised by an altered expression of the core traits of autism, as well as possible additional characteristics that are not currently recognised by diagnostic criteria (Dworzynski et al., 2012 ; Hull et al., 2017 , 2020 ; Kirkovski et al., 2013 ; Kopp & Gillberg, 2011 ; Kreiser & White, 2014 ; Lai et al., 2015 ; Rivet & Matson, 2011 ; Van Wijngaarden-Cremers et al., 2014 ). Although no conclusive framework has yet been derived, all proposed theories may contribute to this diagnostic sex/gender bias, delaying early detection in many females and their access to early supports and services, and consequently hindering their development, mental health, and well-being (Pellicano et al., 2014 ).
To improve early detection of autism in females, understanding sex/gender differences is important. Signs of autism are said to largely manifest within the first 2 years of a child’s life (Fombonne, 2009 ; Rogers & Dilalla, 1990 ; Werner et al., 2000 ); however, evidence for sex/gender differences at a young age is conflicting. When investigating social communication and interactions (SCI), several studies have found that females have greater difficulties than males (Hartley & Sikora, 2009 ; Lawson et al., 2018 ; Rahaman et al., 2021 ; Ros-Demarize et al., 2020 ; Wang et al., 2017 ). In contrast, one study found that autistic females have less social communication difficulties (as per lower social affect scores) than males (Craig et al., 2020 ), while others found no sex/gender differences (Andersson et al., 2013 ; Carter et al., 2007 ; Reinhardt et al., 2015 ; Van Wijngaarden-Cremers et al., 2014 ). Additionally, some studies have reported fewer restricted and repetitive behaviours and/or interests (RRBIs) in autistic females compared with males (Hartley & Sikora, 2009 ; Sipes et al., 2011 ; Wang et al., 2017 ), whereas others found no sex/gender differences in this domain (Carter et al., 2007 ; Craig et al., 2020 ; Fulceri et al., 2016 ; Reinhardt et al., 2015 ; Siracusano et al., 2021 ).
The cause of inconsistencies across the sex/gender literature is complex and currently unknown, due to both similarities (e.g., measurement tools) and differences (e.g., heterogeneous sample characteristics) across studies. It has recently been suggested that a qualitative approach may help provide insight, as it can be more sensitive to capturing how females may present their autistic characteristics than a quantitative approach using overall domain/algorithm scores on standard measures (Lai & Szatmari, 2020 ; Lai et al., 2015 ). Kopp and Gillberg ( 2011 ) introduced the importance of qualitative research via item level analysis when they found that sex/gender differences were only evident after exploring individual behaviours of autism (rather than total scores). Since then, numerous studies have found significant differences between females and males, with respect to narrow constructs (i.e., subdomains of broad diagnostic domains) and/or individual behaviours of SCI (see Wood-Downie et al., 2020 for a review), and RRBIs (Antezana et al., 2019 ; Ben-Sasson et al., 2019 ). Generalising to autistic individuals across their lifespan, these results enhance our understanding of where the exact sex/gender differences in autistic traits may lie.
Focusing exclusively on individual signs of autism that emerge early in life, current research has identified a number of behaviours specific to autism across sex/gender. For example, compared to typically developing (TD) peers, young autistic children have been found to display reduced eye contact, response to name, and social smile, as well as more repetitive whole-body movements and behaviours with objects (e.g., spinning, lining up, and visually exploring; see Tanner & Dounavi, 2021 ; Zwaigenbaum et al., 2015 for reviews). To the best of our knowledge, however, no study to date has synthesised what is currently known about the sex/gender differences of such behaviours, including those pertaining to SCI, RRBIs, and additional behaviours. Therefore, this paper aimed to determine whether females differ from males in the early childhood signs of autism, by reviewing studies that investigated sex/gender differences in behaviours of autism emerging before the age of six.
This systematic review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement (Moher et al., 2009 ) and was registered with PROSPERO (CRD42021273521).
Three electronic databases (PsycINFO, MEDLINE, and CINAHL) were systematically searched on 4 July 2021. Identical search terms were used across all databases that related to (1) autism, (2) young children, (3) females, and (4) early signs (see Table 1 for complete search strategy). Searches were limited to titles and abstracts, as well as studies published in English and containing human subjects. The reference lists of eligible articles were also hand-searched to identify any further relevant articles.
To be included in the review, studies were required to meet the following criteria: (1) female participants with a diagnosis of autism and a mean age below 6 years. Retrospective studies, including parents reporting on their child’s behaviours between the ages of 0–5, were also included; (2) analysis/investigation of individual behaviours that were consistent with autism diagnostic criteria (i.e., DSM-III, DSM-III-R, DSM-IV, DSM-IV-TR, DSM-5, ICD-9, or ICD-10); and (3) peer-reviewed quantitative and/or qualitative articles.
Studies were excluded from the review if (1) participants had no diagnosis of autism and/or the mean age was 6 years or above; (2) no distinction was made between autistic females and other participants (e.g., males or TD peers) in the analyses; (3) only broad constructs of autism, including global or domain scores (i.e., SCI and RRBIs) were reported; (4) they were published in languages other than English; and/or (5) other study designs were employed, such as case studies, single-case designs, pre-post and/or longitudinal intervention studies without baseline data, review articles, books or book chapters, dissertations, editorials, commentaries, and grey literature.
All potential studies were independently screened by two authors, TC and NF, to eliminate those that did not meet the inclusion criteria. Inter-rater agreement was very strong: 99% for title and abstract screening, and 88% for full-text screening. Any discrepancies were discussed and consensus was reached.
Data was extracted from eligible studies by TC and reviewed by NF. Any discrepancies were discussed and agreement was achieved. Extracted data from each study included (1) publication details (including authors, date and country of research), (2) research design, (3) participant characteristics (e.g., sample size, age, sex/gender, comparison groups, diagnosis, diagnostic method), (4) behaviours investigated, (5) measure of outcome variable, and (6) relevant findings.
A critical evaluation, assessing the quality of each included article, was conducted using the Appraisal Tool for Cross-Sectional Studies (AXIS; Downes et al., 2016 ). The AXIS tool consists of 20 items that evaluate study rationale, methods, results, discussion, and other aspects of study design, as well as risk of bias. Each criterion was rated as either ‘yes’ = 1, ‘no’ = 0, and ‘do not know’ = 0. Scores ranged from 0 to 20, with higher overall scores reflecting higher quality and lower risk of bias. Papers were classified as low (0–7), moderate (8–14), or high (15–20) quality, based on classifications used in previous literature (Moor & Anderson, 2019 ; Musetti et al., 2021 ). The quality assessment of eight out of the nine included articles was completed by two independent authors, TC and NF. To minimise any bias, the quality assessment of Barbaro and Freeman ( 2021 ) was independently completed by TC and a fellow student researcher, as JB and NF were authors of this paper. Any discrepancies (< 1%) were discussed and consensus was achieved on all items.
As detailed in the PRISMA flow diagram in Fig. 1 , a total of 1760 articles were screened for eligibility, and the full text of 52 articles were reviewed. Nine articles met the inclusion criteria and are summarised in Table 2 . Articles were categorised into three broad themes, including SCI (five studies), RRBIs (five studies), and additional behaviours such as play (five studies). Four articles appear in multiple broad themes, as there were two or more unique components to each study (Barbaro & Freeman, 2021 ; Harrop et al., 2015b ; Hiller et al., 2016 ; Øien et al., 2017 ).
PRISMA flow diagram of study selection
The characteristics of eligible studies are presented in Table 2 . A total of 1844 participants were involved across the nine studies, including 592 autistic females. All nine articles compared autistic females and males, and four articles also compared autistic females to other peers, including TD (Bacon et al., 1998 ; Harrop et al., 2017 ; Knutsen et al., 2019 ), and those with an intellectual disability (ID; Bacon et al., 1998 ; Goldman et al., 2009 ; Knutsen et al., 2019 ), developmental and/or language delay (DD/LD; Bacon et al., 1998 ; Goldman et al., 2009 ). Two studies used parent-reported questionnaires to measure outcomes (Hiller et al., 2016 ; Øien et al., 2017 ), while seven studies used clinician observations (Bacon et al., 1998 ; Barbaro & Freeman, 2021 ; Goldman et al., 2009 ; Harrop et al., 2017 , 2015a , b ; Knutsen et al., 2019 ). Of the nine included studies, one involved retrospective analysis, whereby parents of older children reported on their child’s behaviours before the age of 6 (Hiller et al., 2016 ).
There was excellent agreement between appraisers (ICC = 0.971, p < 0.001) for AXIS ratings. The quality scores for the included studies ranged from 14 to 17 out of 20 (see Table 2 ). Six out of the nine studies were rated as high quality, with three studies rated as moderate quality. Overall, weaknesses in study designs were apparent on AXIS items three and seven, as no study reported a power analysis to justify sample size, and eight out of nine studies did not address and/or categorise non-responders.
Verbal communication.
One out of the three studies examining verbal communication differences in autistic females and males reported a significant difference across sex/gender (Hiller et al., 2016 ). Specifically, parent-report indicated that females had more advanced vocabulary than males (Hiller et al., 2016 ). In contrast, no significant differences were found for 2-word utterances, 5–10 words, and 20–50 words (Barbaro & Freeman, 2021 ), as well as in understanding speech/instructions (Barbaro & Freeman, 2021 ; Øien et al., 2017 ).
Nonverbal communicative behaviours used for social interactions were explored in four studies, with no significant sex/gender differences noted (Barbaro & Freeman, 2021 ; Harrop et al., 2015b ; Hiller et al., 2016 ; Øien et al., 2017 ). Autistic females did not differ from autistic males regarding the use of conventional gestures, such as protodeclarative pointing (Barbaro & Freeman, 2021 ; Øien et al., 2017 ), protoimperative pointing (Øien et al., 2017 ), waving (Barbaro & Freeman, 2021 ), and preparation to being picked up (Hiller et al., 2016 ). Eye contact (Barbaro & Freeman, 2021 ; Øien et al., 2017 ), initiating behavioural requests (e.g., eye contact and/or pointing), and responding to behavioural requests, was also similar across autistic females and males (Harrop et al., 2015b ).
Mixed results were found across three studies investigating imitation. Øien et al. ( 2017 ) found that autistic females showed less parent-reported imitation than autistic males. In contrast, Hiller et al. ( 2016 ) found that autistic females were more likely to engage in parent-reported complex imitation, such as imitation games or multiple actions than autistic males. Findings from Barbaro and Freeman ( 2021 ) found no significant differences in imitation abilities via professional observations.
Variations of sharing interest were evaluated by three studies (Barbaro & Freeman, 2021 ; Harrop et al., 2015b ; Øien et al., 2017 ). Based on parent report, Øien et al. ( 2017 ) found that autistic females were more likely to follow a finger point than autistic males. When using clinician observations, however, no differences between autistic females and males on following a point were observed (Barbaro & Freeman, 2021 ). Furthermore, no sex/gender differences were found for joint attention, including initiating and responding (Harrop et al., 2015b ), and looking where others are looking (Øien et al., 2017 ). Shared interests, including showing (Barbaro & Freeman, 2021 ; Øien et al., 2017 ), pointing to indicate interest, and attracting attention to play activities (Øien et al., 2017 ), were also similar across females and males. Additionally, there was no sex/gender difference in response to name (Barbaro & Freeman, 2021 ; Øien et al., 2017 ).
Four studies considered sharing of emotions, with no differences between sex/gender found for providing comfort (Hiller et al., 2016 ), responding to distress (Bacon et al., 1998 ), response to being held (Hiller et al., 2016 ), and response to social smile (Barbaro & Freeman, 2021 ; Øien et al., 2017 ).
Social motivation was explored via parent-report in three out of five studies looking at SCI (Barbaro & Freeman, 2021 ; Hiller et al., 2016 ; Øien et al., 2017 ). Hiller et al. ( 2016 ) found that autistic females were more likely to desire to be liked by peers than autistic males. Barbaro and Freeman ( 2021 ) and Øien et al ( 2017 ), however, concluded that there were no sex/gender differences when it came to interest in other children. Similarly, there was no difference found for first concern about socialising behaviours (Hiller et al., 2016 ).
Stereotyped or repetitive speech, motor movements, and/or use of objects.
Five studies investigated items related to stereotyped or repetitive speech, motor movements, and/or use of objects, with mixed results (Goldman et al., 2009 ; Harrop et al., 2015a ; Hiller et al., 2016 ; Knutsen et al., 2019 ; Øien et al., 2017 ). When separating participants based on their intellectual functioning, Goldman et al ( 2009 ) identified significantly more rhythmic movements, including head/trunk and arm/hand, in autistic females (non-verbal IQ ≤ 80) than autistic males (non-verbal IQ ≤ 80). Knutsen et al ( 2019 ) also found that autistic females (IQ ≥ 70) had significantly less repetitive interests or stereotyped behaviours than autistic males (IQ ≥ 70).
In contrast, three studies found no sex/gender differences pertaining to hand, finger, and other complex mannerisms (Harrop et al., 2015a ; Knutsen et al., 2019 ; Øien et al., 2017 ), while two studies found no sex/gender differences related to repetitive behaviours, including lining up objects (Harrop et al., 2015a ; Hiller et al., 2016 ). Additionally, the two studies examining stereotyped/idiosyncratic language found no differences between autistic females and males (Harrop et al., 2015a ; Knutsen et al., 2019 ).
Sensory interests and sensitivities were explored in four of the five studies investigating RRBIs (Harrop et al., 2015a ; Hiller et al., 2016 ; Knutsen et al., 2019 ; Øien et al., 2017 ). No differences were found between autistic females and males on sensory interests (Harrop et al., 2015a ; Knutsen et al., 2019 ), sensory-visual (i.e., visual inspection), and sensory aversions/sensitivities (Harrop et al., 2015a ; Hiller et al., 2016 ; Øien et al., 2017 ).
One study investigated fixated interests via parent-report, finding that autistic females were less likely to have interests in parts of mechanical objects than autistic males (Hiller et al., 2016 ). Hiller et al. ( 2016 ) also investigated the management of change to routine and reported no significant differences between autistic females and males.
Five articles examined whether autistic females and males differed in behaviours not typically recognised within diagnostic manuals (e.g., DSM-5-TR; American Psychiatric Association, 2022 ) but are still recognised as being characteristic of some children with this diagnosis.
Play behaviours were investigated in five studies (Barbaro & Freeman, 2021 ; Harrop et al., 2017 ; 2015b ; Hiller et al., 2016 ; Øien et al., 2017 ); all studies found that autistic females and males were equivalent in their play. Play behaviours included complex (i.e., simple object, combination, presymbolic, and symbolic; Harrop et al., 2017 , 2015b ), pretend (Barbaro & Freeman, 2021 ; Øien et al., 2017 ), parallel (Barbaro & Freeman, 2021 ), and functional play (Øien et al., 2017 ), as well as play style (Hiller et al., 2016 ). Additionally, autistic females did not differ from autistic males and TD females in type of toy engagement (Harrop et al., 2017 ).
No significant sex/gender differences were found for aggressive behaviours, internalising problems (Hiller et al., 2016 ), health (Hiller et al., 2016 ; Øien et al., 2017 ), or loss of skills (Barbaro & Freeman, 2021 ).
There is a growing acknowledgement of a sex/gender bias that impacts autistic females receiving an appropriate and timely diagnosis. The aim of this review was to therefore gain a better understanding of the female autism presentation in early childhood by systematically reviewing studies that investigated sex/gender differences in the early signs of autism in young children (i.e., under the age of 6). Overall, there were few differences in relation to sex/gender, suggesting that autistic females and males may be more similar than different in early childhood. There was evidence for some differences between autistic females and males on a few individual behaviours associated with SCI and RRBI; however, consistent with much of the autism literature, results were often conflicting. For example, some studies indicated that autistic females have particular strengths in individual behaviours related to following a finger point (Øien et al., 2017 ), vocabulary, social desire, and imitation (Hiller et al., 2016 ). This was, however, contradicted by studies that found greater imitation difficulties in females (Øien et al., 2017 ) and/or an absence of sex/gender differences (Barbaro & Freeman, 2021 ; Øien et al., 2017 ). Similarly, some studies found significant differences between females and males for repetitive or stereotyped behaviours (Knutsen et al., 2019 ) and motor movements (Goldman et al., 2009 ), while others did not (Harrop et al., 2015b ; Hiller et al., 2016 ; Knutsen et al., 2019 ; Øien et al., 2017 ). Implications and possible explanations for these discrepancies are discussed below.
While the cause of mixed findings is likely multifactorial, the heterogeneity of this population and factors that may influence autistic traits in different individuals should be considered. Studies included in the review consisted of children with varying cognitive, verbal, and non-verbal abilities, all of which could be factors contributing to the different manifestations of autistic traits (Mayes & Calhoun, 2011 ; Rommelse et al., 2015 ; Venker et al., 2014 ). It was only when participants were separated based on their intellectual functioning that significant differences between autistic females and males related to RRBIs were found (Goldman et al., 2009 ; Hiller et al., 2016 ; Knutsen et al., 2019 ). For example, autistic females without ID had reduced repetitive interests or stereotyped behaviours (Knutsen et al., 2019 ), and less fixated interests in parts of mechanical objects (Hiller et al., 2016 ) than autistic males without ID. For females with a non-verbal IQ of less than 80, however, more stereotyped rhythmic movements were observed (Goldman et al., 2009 ). When IQ was not stratified, females and males did not differ (Harrop et al., 2015a ; Øien et al., 2017 ). This suggests that some sex/gender differences may be contingent on the level of intellectual functioning, particularly as repetitive and stereotyped motor movements are also pronounced in those with ID alone (Bodfish et al., 2000 ). Therefore, it is currently unclear whether it is autistic females or females with a certain IQ who may present with differing individual RRBIs.
There was also heterogeneity in the measurement of early signs of autism across studies, including the use of various parent-report surveys and observational-based assessments. Measures that had not been previously trialled and/or validated were also utilised (Bacon et al., 1998 ; Goldman et al., 2009 ; Hiller et al., 2016 ), as well as retrospective reporting (Hiller et al., 2016 ).
Retrospective research by Hiller et al. ( 2016 ) that involved children diagnosed with autism after the age of 5 accounts for a large portion of the significant sex/gender differences found within this review. Although not evident in autistic children identified during early childhood (Barbaro & Freeman, 2021 ; Øien et al., 2017 ), results of the retrospective analysis indicated that autistic females who received a diagnosis of autism later in life demonstrated more advanced individual SCI behaviours (i.e., vocabulary, imitation, and social desire) and fewer individual RRBIs (i.e., fixated interests in parts of mechanical objects) in early childhood than males (Hiller et al., 2016 ). When similar results have been reported in previous research, they were attributed to the notion that females mask or camouflage their difficulties in social settings (Attwood, 2007 ; Wing, 1981 ). As this review focused on early childhood, however, it is unlikely that the ability to engage in such complex practices, including understanding others’ behaviour, recognising one’s strengths and difficulties, and developing strategies to compensate and reduce the appearance of autistic behaviours, would have yet been developed (Banerjee & Yuill, 1999 ; Knutsen et al., 2019 ; Pellicano et al., 2014 ). Rather, these results support the theory of a different expression of autism in some females (Hull et al., 2017 ; Kirkovski et al., 2013 ; Lai et al., 2015 ) and can provide insight into why it is more difficult to detect autism in females who may be missed at an early age. For reasons not yet known, it appears that some SCI difficulties in this subgroup of females are not as overt/recognisable as those who are diagnosed in early childhood.
Interestingly, most sex/gender differences found in this review were also the result of information provided by parents (Hiller et al., 2016 ; Øien et al., 2017 ). Such findings often lacked consistency across informants, as the same sex/gender differences were not observed by clinicians. Concerns regarding the accuracy of parent-reported data have been raised, as it is vulnerable to interpretation and recall bias (Ozonoff et al., 2008 , 2018b ). Correct recall is particularly challenging when parents retrospectively report on their children’s behaviour, as per Hiller et al. ( 2016 ), because there is a greater likelihood of errors in memory (Hus et al., 2011 ; Ozonoff et al., 2018b ). Furthermore, the reliability of parent-reported data is often questioned because parents lack the specific knowledge that professionals possess when it comes to evaluating child development (Law & Roy, 2008 ; Nordahl-Hansen et al., 2014 ). Such limitations suggest that the parent-reported sex/gender differences discovered in this review may not be a true reflection of a child’s behaviour/autistic traits.
On the other hand, some research has found that parents are usually reliable reporters (Larsen et al., 2018 ; Miller et al., 2017 ; Spikol et al., 2019 ). Parents possess the most knowledge about their child’s everyday functioning and can raise concerns about behaviours that may be missed during a standardised assessment (Horovitz et al., 2012 ; Ozonoff et al., 2018a ). Retrospective parent reporting can also help identify what behaviours were most memorable (and most likely challenging) to parents after time has passed (Tanner & Dounavi, 2021 ). Additionally, as mentioned by Øien et al. ( 2017 ), survey and interview questions can be open to interpretation depending on the wording and examples provided. Parents’ interpretation of questions may differ from clinicians (given differences in background and training) and can therefore offer perspectives that may not have been considered. Differences in informants likely contribute to conflicting findings, although both parental reports and professional observations offer valuable information. Neither should be preferred nor discounted, but rather, used together to gain a greater understanding of early childhood signs of autism.
The significant finding from Goldman et al. ( 2009 ) highlights the importance of breaking observed behaviours down into their individual form. In children with ID, Knutsen et al. ( 2019 ) found no significant sex/gender differences for stereotyped movements, although this item on the ADOS-2 (Lord et al., 2012 ) covers a range of movements, including hand and finger, and other complex body mannerisms. Females were only noted to differ from males once motor stereotypies were categorised into specific forms (i.e., rhythmic, head/trunk, and arm/hand; Goldman et al., 2009 ). Similarly, Hiller et al. ( 2016 ) found sex/gender differences regarding fixated/repetitive interests, possibly because the item pertained specifically to parts of mechanical objects, rather than a variety of behaviours (as per item D4 of the ADOS-2; Knutsen et al., 2019 ). It seems that when individual behaviours are grouped into one item, sex/gender differences may be missed. It is only when behaviours are broken down individually that differences can be identified.
As per the quality analysis, a key weakness of eight out of the nine studies included in this review was the lack of power analysis to justify their sample size. Not only were more males than females included in most study samples, but several studies also reported their small sample size to be a limitation (Barbaro & Freeman, 2021 ; Harrop et al., 2017 , 2015a ). All significant findings came from studies that had some of the largest sample sizes, while some of the studies with small samples noted that their results showed trends toward significant sex/gender differences in the early signs of autism (Harrop et al., 2015a , b ). Although it cannot be said with certainty, it is possible that some of these conflicting findings and non-significant trends are a consequence of small sample sizes, and that more differences may have been reported if studies were adequately powered.
This systematic review revealed no consistent sex/gender differences in the early signs of autism — so why is it that females are at a much greater likelihood of going unidentified than males? While further research is needed, the findings indicate two possible reasons. Firstly, it may be that a female-specific manifestation of autism (i.e., phenotype) does exist, whereby some females present with an expression of autism in early childhood that does not fit with our current conceptualisation (Hull et al., 2017 , 2020 ; Kirkovski et al., 2013 ; Lai et al., 2015 ). However, earlier studies were predominantly made up of individuals who had already come to the attention of clinicians/received a diagnosis of autism, meaning their presentations aligned with existing (male-influenced) diagnostic criteria (Kopp & Gillberg, 1992 ; Kreiser & White, 2014 ). Therefore, these studies may not have included those individuals who expressed their early characteristics of autism in an unfamiliar manner, limiting our understanding of this specific manifestation. Results from Hiller et al. ( 2016 ) provide insight into this hypothesis and support the proposition that females who are most likely to present with a different expression of autism are those who go un- or misdiagnosed early in life, not those that make up clinical samples. Furthermore, while results of this review suggest that play and aggressive behaviours, internalising problems, health, and loss of skills, are additional characteristics that do not appear to differ between females and males, more research is needed and there is still a plethora of behaviours to be investigated. For example, Tanner and Dounavi ( 2021 ) reported that delayed fine or gross motor skills can be an indicator of autism. Research also suggests that demand avoidance is worth exploring (Kopp & Gillberg, 2011 ). Additional behaviours that have not yet been considered by the current literature may also make up the female presentation of autism.
Secondly, it could in fact be that females do not differ from males in the early childhood signs of autism. Although it remains unclear as to why some females are not recognised as being on the autism spectrum at a younger age, genetics, comorbidities, culture, and social and economic factors could instead be at play (Kreiser & White, 2014 ; Lai & Szatmari, 2020 ; Mazzone et al., 2012 ). It may also be that there is a subgroup of children — both female and male — who are missed very early on (potentially due to the aforementioned factors). However, further investigation would be required as there is very limited research and knowledge about later diagnosed males and their experiences, given that later diagnosed research focuses primarily on females and understanding the female autism phenotype (Bargiela et al., 2016 ; Lehnhardt et al., 2016 ).
One limitation is the scarce amount of research in this specific field and consequently the small number of articles included in this review. Given this, the conclusions made are difficult to generalise. Conclusions drawn were also limited due to the heterogeneous nature of sample characteristics, methodology (e.g., measurement), and study findings. Additionally, as papers published in languages other than English were excluded from this review, relevant studies that provide different sociocultural perceptions of autistic behaviours were potentially missed (Harrison et al., 2017 ; Young et al., 2018 ).
While this paper set out to review the early childhood signs of autism in females, participants within and across samples spanned multiple developmental periods: infancy, toddlerhood, and preschool. Autistic traits can change across early development (Gotham et al., 2012 ; Venker et al., 2014 ), which may also correspond to sex/gender differences (Szatmari et al., 2015 ; Waizbard-Bartov et al., 2021 ). Thus, any potential differences pertaining to a specific developmental period could have been concealed by the wide-spanning age range of participants.
Ultimately, the contradictory findings, heterogeneous nature of autism, different study designs used, and the lack of replicated studies make it difficult to determine if any sex/gender differences in the early childhood signs of autism exist. Given this, large-scale research that utilises similar samples and methodologies is needed in this field. This will allow for comparisons across the literature and clearer conclusions to be made about autistic females. Future research should also examine IQ and age as possible factors influencing sex/gender differences. Additionally, ongoing research exploring sex/gender differences in additional behaviours not currently included in the diagnostic criteria is in the very early stages and remains of great importance (as per Lai et al., 2015 ). Future research should consider behaviours not captured in this review, such as fine and gross motor difficulties (Tanner & Dounavi, 2021 ), demand avoidance (Kopp & Gillberg, 2011 ), and novel behaviours outside those typically targeted in the literature.
Our understanding of the earliest childhood signs of autism in females who are diagnosed later in life is not well understood, partially because much of the existing research consists of young children who have already received a diagnosis (Loomes et al., 2017 ). Therefore, to better understand why some autistic females are missed early on, investigating the early childhood signs of autism specific to these later diagnosed females is key (rather than focusing on young females who have already received a diagnosis of autism). This research should consider methods such as retrospective video analysis of females and males diagnosed later in life. This will allow for observation of the earliest-presented signs of autism in females as compared to males while removing memory errors and recall bias. Interviews with parents of these children, however, can also be of value, as it will allow for interpretation and differing perspectives, as well as individual behavioural exploration (rather than grouping of behaviours).
This is the first systematic review to synthesise studies that investigated sex/gender differences in the early childhood signs of autism, including those associated with SCI, RRBIs, and additional behaviours. While there is some evidence that females differ from males on a few individual signs of autism, this review indicates that there are more sex/gender similarities than differences in the early years of life. It is, however, difficult to draw accurate conclusions based on the information available in the current literature. Further large-scale research with more homogeneous study designs is needed to disentangle the current ambiguity. Specifically, it is important to focus closely on later diagnosed females to better determine whether their early signs of autism present differently to males, and if there are signs of autism not yet identified that are specific to them during early childhood. In doing so, important findings can be shared with health professionals to allow them to better detect autism in females in a timely manner, increasing opportunities for females to access early supports and services, and ultimately enhancing their development and well-being.
The term “sex/gender” is used when discussing the differences between females and males, as the individual effects of biological sex and social gender constructs on the presentation of autism have not yet been determined (Lai et al., 2015 ).
In keeping with the preferred language of those within the autism community, “identity-first” language (i.e., “autistic person”) rather than “person-first” language (i.e., “person with autism”) is used throughout this review (Bury et al., 2020 ; Kenny et al., 2016 ).
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Chellew, T., Barbaro, J. & Freeman, N.C. The Early Childhood Signs of Autism in Females: a Systematic Review. Rev J Autism Dev Disord 11 , 249–264 (2024). https://doi.org/10.1007/s40489-022-00337-3
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However, women with autism may display other stimming behaviours such as skin picking, feet rubbing, pacing, or hair twirling. People with autism tend to stim more than other people and may not be ...
Lai et al. (2015) made the case that females with ASD may simply be exhibiting different RRBs rather than fewer, and it is possible that these less common forms of RRBs are being missed during diagnostic assessments. Understanding the phenotypic differences in the presentation of autism is critical for diagnosticians for several reasons.
Autism is a diverse condition that affects individuals of all genders; the overall prevalence estimate of autism in the U.S. is one in 36 children. According to the Centers for Disease Control and Prevention (CDC), as of March 2023 about 4% of boys and 1% of girls age 8 years have autism. Although an autism diagnosis occurs more often in men ...
Research shows that autism in adult women and girls can look different than men and boys. According to the DSM-5-TR, the American Psychiatric Association's most recent diagnostic manual of mental disorders including autism spectrum disorder (ASD), autistic girls and women may present with: Better reciprocal conversation skills
This is because these traits were largely based on research focused on boys. Autism traits common in females, particularly those with low support needs, include: Relying on other people to guide or speak for them. Having unusual sensitivity to sensory challenges. Having passionate but limited interests.
Past theories on the autism gender ratio. Historically, much research has shown that males are more affected by autism than females. One of the most consistent findings in autism research has been the male-to-female prevalence ratio of 4:1 (Nordgren et al., 2018). This ratio and observed sex/gender differences have underpinned our comprehension ...
Males and females both have hyper-fixated and restricted interests but many of my female clients get fixated on things like Dungeons and Dragons, animals, world-building, books, bones, autism ...
Autism spectrum disorder (ASD) is a developmental disability that is usually diagnosed at or before the age of 3.While people of any sex and gender can be autistic, it is common for people assigned female at birth to be diagnosed with ASD later in life. Many autistic women and nonbinary people are not diagnosed until they reach adulthood.
excessive talk about a favorite subject without giving attention to the reactions of others. speech problems or unusual speech patterns. inability to express emotions or recognize them in others ...
Assessment of Autism in Females and Nuanced Presentations is a must-have resource for researchers, professors, and graduate students as well as clinicians, practitioners, and policymakers in developmental and clinical psychology, speech language pathology, medicine, education, social work, mental health, and all interrelated disciplines.
Social awareness. Autistic girls may be more socially aware, overall, than their male counterparts. They may have a higher ability to maintain relationships with other people and adjust their ...
The evidence so far supports the existence of a female-typical autism presentation, although further examination of the characteristics and their impact across all genders and ages is needed. Autism is more commonly diagnosed in males than females. One explanation is the 'female protective effect': there is something inherent in bein
Rates of autism prevalence suggest that boys are, on average, 4 times more likely to have autism than girls. But this figure may hide the true incidence of autism in girls and women, with some estimates ranging from 7:1 to as low as 2:1 (that is, 2 boys for every girl). Parents with daughters on the spectrum will often share frustrating tales ...
The current qualitative study explores female presentation and experience of autism spectrum disorder (ASD). ASD, hence forth referred to as "autism", is a neurodevelopmental condition characterised by persistent difficulties in social interaction, social communication and restricted and repetitive patterns of behaviour, from a young age (Diagnostic and Statistical Manual of Mental ...
Brugha's 2009 survey of adults living in households throughout England found that 1.8% of men and boys surveyed had a diagnosis of autism, compared to 0.2% of women and girls. In 2015, the ratio of men to women supported by the National Autistic Society's adult services was approximately 3:1, and the ratio of boys to girls in our charity's ...
Hopefully, as the understanding of women's presentation of ASD increases, diagnostic criteria will become more encompassing and more women and girls will receive the correct diagnosis ...
Signs of autism in women. Some of the characteristics that adult women with an autism diagnosis commonly report, include: Being able to camouflage or mask the signs of autism. Mimicking others' behaviours as a means of gaining acceptance and blending in. Imitating the gestures, expressions and body language of others.
We suggest that training on the presentation of autism in women for primary and secondary healthcare professionals, along with improved diagnostic and support pathways for autistic adult women could go some way to support well-being. Keywords: autism, diagnosis, identity, well-being, women.
Findings suggest that autistic females present differently to males and highlight low recognition of the female presentation of autism among the general public, in social spheres, educational, clinical and forensic settings. This lack of recognition appears to affect the likelihood of females being referred for diagnosis, the reliability of ...
Autism is a highly heterogeneous neurodevelopmental disorder (1:00). Supekar discusses the skewed gender ratio of women to men (ratio of 1 to 4) in autism diagnoses and asserts that this lack of female representation is a key source of heterogeneity in autism symptom presentation, treatments, and research (2:20).
Securing an early diagnosis is a key priority of the UK government's Autism Strategy 2021-2026 in order to ensure that autistic people receive effective support, and outcomes are improved. As we have seen, in the case of autistic females (and those with an internal presentation) that early diagnosis is currently less likely to happen.
Several theories have been proposed to better understand the nature of this diagnostic sex/gender bias. Due to the underrepresentation of females in both research and clinical practice, one hypothesis is that our conceptualisation of autism and the development of diagnostic criteria and assessment tools is based upon the 'male' presentation (Kopp & Gillberg, 1992; Kreiser & White, 2014).
There is increased recognition that women and girls with autism spectrum disorders (ASD) are underserved by the clinical criteria and processes required to receive a diagnosis. This mixed-methods systematic review aimed to identify key barriers to obtaining an ASD diagnosis in girls and young women under 21 years. Six themes were identified that focused on perceived gendered symptoms, namely ...