Abstract
An autism diagnosis in adulthood can increase women’s self-compassion and inform appropriate supports. This study explored what helped and hindered autistic women when accessing an adulthood autism diagnosis in Australia. Ten autistic women diagnosed as adults within the past 5 years participated in a semi-structured interview about their experiences of accessing a diagnosis. Framework analysis was used to identify barriers and facilitators on person, provider and system levels. Person-level factors included women’s recognition of their autism, motivation, preparation, social support and approach during the assessment. Provider-level factors related to providers’ level of knowledge and skill in working with autistic women, as well as the women’s experience of being dismissed or misdiagnosed. Interactions between person- and provider-level factors highlighted that the diagnostic process is relational. System-level factors included the requirements of the diagnostic process (time, financial costs, and technology) and the nature of diagnostic criteria and assessment tools used. These factors provided the context in which person-level and provider-level factors operated. The experiences of participants highlight improvements that could be made to accessing an adulthood autism diagnosis for women in Australia, including provider knowledge of the heterogeneity of autism and the development of resources to help autistic women prepare for their diagnostic assessment.
Lay abstract
An autism diagnosis can have a big impact on women and make it possible to access support. This study explored women’s experiences of being diagnosed with autism as an adult in Australia, to try to understand what was helpful (facilitators) and unhelpful (barriers) for them during this process. We interviewed 10 autistic women who had been diagnosed in the last 5 years. Framework analysis was used to understand the data. We wanted to understand barriers and facilitators relating to the individual participants, the professionals they saw and the system they went through for their diagnostic assessment. Women reported that being able to recognise they were autistic, being motivated, preparing for the assessment, having social support and unmasking to be themselves were helpful during the diagnostic process. They reported that having a knowledgeable diagnostician who made accommodations for their needs assisted them during the assessment process. When providers dismissed the participants when they first raised the possibility they were autistic, it delayed them in seeking an assessment. At the system level, the women in this study found some aspects of the healthcare system difficult to navigate, particularly costs and long waitlists. Some found the assessment tools used were not well suited to them. The experiences of the women in this study highlight improvements that could be made to accessing an adulthood autism diagnosis in Australia. These include improving provider knowledge of the varied presentation of autism and the development of resources to help autistic women prepare for their diagnostic assessment.
Autism spectrum disorder (ASD; or autism) is a lifelong neurodevelopmental condition characterised by differences in social communication and restricted and repetitive behaviours (American Psychiatric Association [APA], 2013). Conceptualisations of autism have changed significantly over time (Happé & Frith, 2020) and continue to evolve (e.g. Jellett & Muggleton, 2022). In Australia, approximately 1% of the population has an autism diagnosis, with males being 3.5 times more likely than females to be diagnosed 1 (Australian Bureau of Statistics [ABS], 2019a). However, these estimates likely underrepresent autistic girls and women, who are more likely to be identified late, mislabelled, or not recognised at all (Begeer et al., 2013; Chester, 2019; Eaton, 2017; Gould, 2017; Huang et al., 2021; Rutherford et al., 2016). Understanding the experiences of autistic women has been identified by the Australian autism community as a research priority (Australian Autism Research Council, 2019).
Gender bias in autism assessment is well-established and partially explains why more males are diagnosed as autistic than females (Lai & Baron-Cohen, 2015). The conceptualisation of autism has historically been based on how autism presents in males; diagnostic criteria and gold standard diagnostic tools were developed and normed for predominantly male populations (Kirkovski et al., 2013; Young et al., 2018). This is problematic as there is emerging evidence of variation in autism presentation across gender (Muggleton et al., 2019). For example, it has been suggested that, compared to boys and men, girls and women experience more internalising and less externalising problems and have different social interests and difficulties (Hull et al., 2020). There is also suggestive evidence that autistic girls and women ‘mask’ more than, or in different ways to, autistic boys and men (Cook et al., 2021; Hull et al., 2020). ‘Masking’ refers to the use of strategies (consciously or not) to camouflage one’s autistic characteristics from other people to cope (Sedgewick et al., 2021), and has been linked to experiencing mental health difficulties (see Cook et al., 2021 for a review). Gender bias and narrow conceptualisations of autism likely contribute to under-recognition and later diagnosis of autistic girls and women (Bargiela et al., 2016). Narrow or stereotyped conceptualisations of autism are likely to impact diagnostic accessibility across the gender spectrum, including for males and non-binary individuals (Strang et al., 2020). When autism in girls has gone unrecognised, an adulthood diagnosis of autism can lead to increased self-compassion and less self-critique (Bargiela et al., 2016; Leedham et al., 2020; Seers & Hogg, 2021). Mental health concerns and suicide risk are common issues for autistic adults (Camm-Crosbie et al., 2018; Cassidy et al., 2020, 2022; Lai et al., 2019). Further, recent findings suggest those who have died by suicide in the United Kingdom had elevated autistic traits, and may have been undiagnosed autistics, with poor engagement in services an additional risk factor. Autistic women are particularly vulnerable to dying by suicide (Hirvikoski et al., 2016). Therefore, having access to an autism diagnosis that could promote self-acceptance and appropriate psychological support is imperative for many reasons (Cage et al., 2018; Cooper et al., 2018; White et al., 2018).
However, navigating healthcare services can be difficult for autistic people. Reasons include (but are not limited to) a lack of appropriate services, service cost, provider misconceptions of autism and inaccessible healthcare facilities (Bradshaw et al., 2019; Malik-Soni et al., 2022). Previous research indicates barriers to healthcare for autistic individuals occur at the person, provider and system levels (Bradshaw et al., 2019; Maddox et al., 2020; Nicolaidis et al., 2015). Person-level factors include characteristics, resources and past experiences of healthcare-seeking individuals. The provider-level includes actions, knowledge and training of healthcare professionals. Finally, the system level refers to the costs and requirements of the healthcare-seeking process. Barriers and facilitators at all three levels are important to understand for advancing access to healthcare services, including autistic women having access to diagnostic assessments.
Barriers to diagnosis for autistic women
Existing literature suggests that women have difficulty accessing an autism diagnosis. Two review articles, both integrating research findings with clinical experience (Green et al., 2019; Zener, 2019), have indicated there are practical barriers, such as challenges in obtaining valid and reliable developmental histories (Green et al., 2019; Lai & Baron-Cohen, 2015). As autism tends to be diagnosed later in women than men, these difficulties disproportionately affect women (Green et al., 2019). In addition, undiagnosed autistic women often seek help for mental health conditions; their autism is often missed or overshadowed by these conditions (Zener, 2019).
Research comparing men and women has shown that women tend to report more frequent and challenging barriers to adulthood autism diagnosis. For example, in a large European study, more autistic men than women knew where to access a diagnostic assessment and how to find information about the process (Scattoni et al., 2021). Similarly, a US-based international study found that autistic women reported greater difficulty than men when finding a diagnostician who specialised in their gender, and greater concern that they would be not listened to, not believed and would be blamed for their symptoms (Lewis, 2017). This comparative research suggests women face barriers to accessing information and clinicians to assist with their adulthood diagnosis.
Qualitative research on women’s experiences of adulthood diagnosis
Qualitative research generates rich descriptions of women’s lived experience of the diagnostic assessment process. Bargiela et al. (2016) conducted semi-structured interviews with 14 women in the United Kingdom, which captured several barriers to diagnosis. Women in this study described a lack of professional knowledge about how autism presents in women and a reluctance to diagnose women who showed some capacity to socialise, and reported having had possible autism traits dismissed by General Practitioners (GPs). In Leedham et al.’s (2020) study of 11 women in the United Kingdom, mislabelling and misdiagnosis were common, and women felt their experiences were not understood by professionals. A qualitative analysis of blog posts of 23 autistic women also revealed barriers to diagnosis, including misdiagnosis, poor professional knowledge, anxiety associated with assessment and concern they would not be diagnosed due to their gender, age or cognitive abilities (Harmens et al., 2022). In addition, women have reported concealing their autistic traits prior to receiving their autism diagnosis (Bargiela et al., 2016; Harmens et al., 2022; Leedham et al., 2020). Such masking might contribute to a delay in receiving autism diagnosis, as professionals might mistake masking for an absence of autism characteristics (Lehnhardt et al., 2016). Although these studies offer insights into the experiences of being a later-diagnosed autistic woman, they were not designed to identify facilitators and barriers to the diagnostic assessment process.
Barriers and facilitators in the Australian context
To the authors’ knowledge, only two studies have explored experiences of the autism diagnostic process in Australia (de Broize et al., 2021; Huang et al., 2022). One of these studies involved a mixed methods approach in which an online questionnaire explored 190 adults’ pathways to adulthood autism diagnosis (Huang et al., 2022). During quantitative analysis few gender differences were found; however, women more frequently identified as being autistic without having a formal diagnosis and reported more frequently than men that they were worried that health professionals would not take them seriously. The gender bias in self-diagnosis may be due to a lack of professional knowledge about autism in women (Huang et al., 2022). Thematic analysis of responses to open-ended questions yielded further insight into the barriers and facilitators experienced by women. For example, women expressed a need for diagnosticians with gender-specific expertise and described discrepancies between themselves and dominant stereotypes of autism, whereas men did not (Huang et al., 2022). This corroborates international research indicating barriers to diagnosis for women largely occur on the provider-level, in particular, provider knowledge, dismissal and stereotyped understandings of autism.
Another Australian study that explored pathways to diagnosis involved semi-structured interviews with 13 autistic adults. Although the aim of this study was not to identify gender differences, thematic analysis identified concerns that women may face difficulty accessing diagnosis due to current diagnostic practices and women adopting masking strategies, suggesting barriers on both person and system levels (de Broize et al., 2021). These studies provide emerging evidence for the barriers experienced by women in Australia, however, like research in other countries, these studies have not comprehensively explored barriers and facilitators to diagnosis for women using rich qualitative methods.
Aim of the current study
The current literature indicates there are barriers to adulthood autism diagnosis for women; however, these have not been explored comprehensively across person, provider and system levels. Furthermore, potential facilitators that might help women access an autism diagnosis have received little research attention. Using a phenomenological approach, the aim of this study was to explore what helped and hindered Australian autistic women during their adulthood autism diagnostic process, at person, provider and system levels, using semi-structured interviews. This study explored only the experiences of autistic people who identified as women, but the authors recognise that understanding the experiences of individuals with other gender identities is also valuable.
Method
Participants
Using purposive criterion-based sampling, 10 participants were recruited who met the following criteria: identified as a woman; had received an autism diagnosis in the past 5 years (to May 2021; to enhance recall of events); were diagnosed as an adult (age 18 or older); currently lived in Australia; were able to read and speak English; did not know the research team members; received their diagnosis in Australia. Given our interest in healthcare systems, which differ geographically, it was decided to limit the sample to those diagnosed in Australia.
Demographic information is presented in Table 1. Some information has been omitted or reported as a range to protect participant anonymity (Petrova et al., 2014). All participants were diagnosed with ASD according to the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5; APA, 2013). Most participants identified as White, lived in a major city and had completed post-secondary education. Participants were aged between 23 and 64 years (M = 40.60, SD = 13.28). Their age at diagnosis ranged from 23 to 59 years (M = 39.50, SD = 12.69). The time between participants first suspecting they might be autistic and receiving an autism diagnosis ranged from 1 to 13 years (M = 4.90 years, SD = 4.18) and almost all (n = 9) participants had been diagnosed as autistic 2 years prior to participation. To validate participants’ diagnosis, participants either produced evidence by showing their diagnostic report (n = 7) or providing details about their diagnosing clinician and clinic (n = 3).
Summary of sample demographic characteristics.
ASD: autism spectrum disorder.
Location categories were based on the Australian Statistical Geography Standard Remoteness Structure (ABS, 2016).
Materials
Demographic questions
Participants were asked questions about their autism diagnosis, age, gender, pronouns, race, highest level of completed education and residential location. Data regarding socioeconomic status were not recorded.
Interview guide
A semi-structured interview guide (see Supplementary Material) was developed in consultation with an autistic advisor. This guide targeted barriers and facilitators to diagnosis at person, provider and system levels, as well as the impact of gender on participant experiences.
Procedure
Ethics approval was obtained from the La Trobe University Human Research Ethics Committee. A recruitment flyer was shared via social media advertisements, and individuals who completed an online expression of interest form were contacted by phone for assessment of eligibility. Semi-structured interviews were conducted between each participant and the first author. The interviews were conducted online using videoconferencing software and participants chose to complete the interview via video and audio (n = 8), audio only (n = 1) or audio and text (n = 1), accommodating their communication preferences (Cummins et al., 2020; Howard & Sedgewick, 2021). During the interview, verbal consent was obtained before participants were asked demographic questions and then the open-ended interview guide questions. The interviews ran for between 54 and 88 min (Mmin = 71.00, SDmin = 11.00).
After their interview, participants were emailed a debriefing statement, including a list of support services, and a $40 AUD voucher to thank them for their time. The recorded data were transcribed verbatim via GoTranscript transcription service (https://gotranscript.com/). Participants were offered an opportunity to review their transcript as a form of member checking (Birt et al., 2016); three participants elected to review their transcript and no changes were requested. Data collection was ceased after 10 interviews when the research team deemed saturation to be achieved. This was confirmed during data analysis; no new themes were generated during the analysis of later interviews (Saunders et al., 2018).
Community involvement statement
The aim of this study was in line with autistic community research priorities which include exploring health service delivery, and gender, diversity and inclusion (Australian Autism Research Council, 2019). The non-autistic lead author consulted with an autistic advisor when drafting the interview guide. Several prompts were added to the interview guide and other suggestions made by the autistic advisor were implemented (e.g. disclosing the interviewer’s non-autistic identity to participants). The interview process was further refined through participant feedback (e.g. comments on wording of questions to enhance clarity).
Data analysis
This study was underpinned by a phenomenological approach, whereby the emphasis was on understanding participants’ lived experience of adulthood diagnosis. Ritchie et al.’s (2013) Framework Analysis was employed to analyse the data. Framework Analysis involves seven steps (see Gale et al., 2013), is used widely in health research, and has been employed in autism research (e.g. Bargiela et al., 2016). Thus, we felt it was appropriate in this study. Framework analysis allows for a combined inductive and deductive approach, in which pre-determined research objectives can guide the analysis while allowing for an exploration of unanticipated participant experiences (Gale et al., 2013). Deductive coding was guided by the pre-determined taxonomy of barriers and facilitators on person, provider and system levels. Inductive coding involved constructing themes from the participants’ responses within these categories and allowing space for and remaining open to unanticipated experiences. To emphasise participants’ lived experience as the basis for constructing the themes, the authors prioritised the open coding of transcripts (inductive), before reflecting on how these codes might fit the pre-determined taxonomy (deductive). Analysis culminated in data being tabulated according to identified themes across individual participant experiences in a ‘framework matrix’ (available in Supplementary Material).
As authors, we acknowledge the influence of our experiences, assumptions and beliefs on the research process and interpretation of the data collected. The lead author, who conducted the interviews and led the analysis of the data is a non-autistic woman who is passionate about the social model of disability and gender equality, as are all authors. The second author has lived experience of receiving an adulthood diagnosis of attention deficit hyperactivity disorder (ADHD), and the third author is a practicing psychologist who provides diagnostic assessments to autistic women. Further, our analysis and interpretation of the data was informed by our training in psychology/psychological science. All authors have Bachelor(Honours) level training in psychology. The second and third authors (RLF, RJ) have doctoral level qualifications in psychology and are employed as teaching and research academics in psychology departments. The third author (RJ) is also a Clinical Psychologist. Activities to maintain reflexivity included collaborative analysis of the raw data within the research team, frequent peer debriefings and reflexive journaling. Using the framework analysis approach also helped to maintain a focus on the participants’ subjective experiences. Charting data into the framework matrix preserves participants’ own expressions, allows confirmation that themes are reflective of participant experience, produces an audit trail and enables thick descriptions of the data (Gale et al., 2013).
Results
Deductive analysis involved exploring barriers and facilitators to diagnosis on the three pre-determined levels. Through inductive analysis, six themes across the three levels were constructed (see Figure 1). Figure 1 represents that person-level and provider-level factors operate and interact within a system. For a framework matrix of quotes showing how participants related to each theme, see Supplementary Material. Reported quotes were corrected for grammatical errors, and repeated words and extraneous words like ‘um’ were removed to enhance readability (Bigby, 2015).
Summary model of what helped and hindered participants seeking an autism diagnosis.
Summary of results
Table 2 provides a summary of the identified barriers and facilitators on person, provider, and system levels.
Summary of barriers and facilitators on person, provider and system levels.
Person level
The three person-level themes centred around participants’ knowledge, social supports, personal attributes and behaviour during assessment – that is, the role participants played in facilitating their own autism diagnosis.
Realisation and motivation: ‘well, you know what? That could explain a lot about me’
This theme captured factors that enabled participants to seek a diagnosis, including the realisation that they might be autistic and their reasons for seeking a formal diagnosis.
Many participants recognised their autism after their child was diagnosed or a healthcare provider raised the possibility with them. These events often initiated the women seeking information, which validated their realisation: ‘When I was researching autism and thinking about if it fits me . . . my whole world kind of exploded’ (P3); ‘Things . . . started popping once I did the research’ (P8). Some participants had suspected they might be autistic but were ‘dismissed’ (P5) by a provider, leading to doubt which delayed diagnosis-seeking: ‘I said to him, something about me being Aspie and he said, ‘Ooh, I don’t think you’re Aspie at all’’ (P8).
Initiating the diagnostic process required the women to recognise the value of a formal diagnosis for them. Participants felt their autism diagnosis ‘explained’ (P1, P6) something, and validated that they were not a ‘bad person’ (P3). For example, a participant explained ‘It’s probably been one of the most validating things . . .that you could do for yourself . . . I think probably for me, the best thing is that it . . . allows you to be a bit kinder to yourself’ (P9), and another found the diagnosis meant they could ‘give [themselves] a break’ (P1). Participants also explained that a diagnosis would help them access support and communicate the validity or ‘credibility’ (P7) of their experiences to others: ‘I wanted to wave, metaphorically, a piece of paper to all the people who told me I was bad’ (P3). Events that prompted recognition of autism and the perceived worth of diagnosis were critical to the women seeking out an autism diagnosis.
Preparation and support for the diagnostic process: ‘I had really done my homework’
All participants prepared themselves for the assessment process. Being ready for the ‘unfamiliar’ (P1) assessment process was important, and sometimes involved a ‘recon trip’ (P6) to become familiar with the assessment environment. Others prepared by carefully selecting a diagnostician who was ‘well suited’ (P4) to their needs: ‘We’ve really sought out people who are approaching things in the same way as we like to do with our life’ (P7). This involved, for example, ‘a lot of research, online and in some adult women autistic Facebook groups . . . I approached three- no, four different services’ (P9). Participants sought information about autism and reflected on how they related to autistic traits; three participants took notes to use during the assessment. Participants reflected that finding information about the diagnostic process was sometimes difficult and that ‘having a step-by-step process of how to [seek an autism diagnosis]’ (P10) would help. Others explained that their skills in research and their knowledge of the healthcare system enabled them to seek out their diagnostic assessment. Some participants suggested developing a document they could have completed, outlining how they relate to autistic traits and ‘why it’s important for me to receive an autism evaluation’ (P6) and might aid women’s preparation and communication with providers.
Some participants researched the presentation of autism in women specifically: ‘I started researching more about female traits and different things and sex, gender bias, blah, blah, blah. In good Aspie fashion, suddenly, I became a bit of a quasi-expert.’ (P8). Participants utilised online groups for autistic women to seek information about autism and diagnosis. This was perceived as ‘most helpful’ (P3), more so than ‘medical’ (P4) information. In addition to accessing information, the participants found that online communities validated their autistic experiences and provided a sense of ‘community’ (P9): ‘You can start connecting with people that . . . understand what you’re going through’ (P2). When reading about other autistic experiences, a participant thought ‘I do that too’ (P10). Family members also supported participants by providing practical and emotional assistance. In some cases, this involved encouraging participants to seek their diagnosis, attending appointments and helping financially. Being prepared, connecting with the autistic community and feeling supported by family members were facilitators of the assessment process.
Approach to assessment: ‘I was very much just myself right from the get-go’
This theme captured comments about participants’ attitudes and strategies during the assessment process. Believing in their autistic identity was a common enabler; participants spoke of their ‘tenacity’ (P8), ‘doggedness’ (P6), ‘resilience’ (P10), and ‘confidence in knowing myself’ (P4). To ease social-interaction challenges, many participants used written communication during assessment, including emailing providers or bringing notes to refer to. Requesting such accommodations required participants to feel comfortable with their diagnostician.
Many participants described ‘unmasking’ during the diagnostic process as an intentional effort to ensure their diagnostician could get an ‘accurate representation’ (P9): ‘[Unmasking] made the process a lot easier, a lot clearer to [the diagnostician]’ (P10). Although several participants masked during assessment, it was reflected that ‘if I didn’t mask . . . then potentially I could have even met criteria for [support] level two’ (P4). Several participants noted that masking, before or during assessment, might be a barrier faced particularly by women: ‘Boys do it to an extent, but not nearly as much as women’ (P7).
Provider level
Two provider-level themes were identified in the data, highlighting both facilitators and barriers to diagnosis. Greater provider knowledge and skill facilitated diagnosis, whereas providers who lacked knowledge and skill and misattributed women’s autistic traits presented a barrier.
Provider knowledge and skill: ‘she believed me first and then worked through it with me second’
This theme captures the way providers interacted with and accommodated participants, and their knowledge of autism and gender. Most diagnosticians were perceived positively as ‘caring’ (P5) and ‘empathetic’ (P3). All participants reported being diagnosed by a psychologist or psychiatrist who had expertise in autism. It was more common for women to describe non-diagnosing providers (e.g. GPs, previous psychologists) as lacking autism knowledge. Several participants felt ‘lucky’ (P2, P9, P10) or ‘spoiled’ (P7) to have had skilled and knowledgeable diagnosticians; they were aware of other women’s experiences with less skilled providers. Provider knowledge and skill were described as so important that one participant underwent the diagnostic process twice because she felt only ‘half-diagnosed’ (P6) due to perceived lack of provider skill the first time around.
In addition, provider knowledge of masking and diverse presentations of autism was reported as a particularly helpful facilitator. Participants who masked said that their diagnostician ‘saw through that’ (P3) or ‘could probably tell’ (P2). In addition, when providers created a ‘safe space’ (P9), it enabled participants to unmask. Several participants’ diagnosticians showed their awareness of the relationship between gender and autism: ‘She was able to explain that . . . it is quite one-sided towards males, in particular, seeking a diagnosis’ (P4). Participants suggested that improved education about diversity and ‘how women may present’ (P9) is needed: ‘it’s not even about awareness. . . it’s about understanding and education’ (P7).
Accommodating participant needs facilitated the diagnostic process. Participants valued communication that was ‘really nice and explicit, and black and white, and all of the information is there’ (P9). Participants appreciated when diagnosticians offered communication options and/or were responsive to communication preferences (e.g. email, handwritten responses, videoconference with camera on or off). Similarly, participants appreciated when providers accommodated their sensory needs. In contrast, ‘hospital white lighting’ (P4), loud ‘bangs’ (P10), and spaces ‘tailored to children’ (P4) were challenging. Participants emphasised that ‘everyone’s different’ (P1) and that providers should work to ‘empower someone to ask [for what they need]’ (P3).
Misattribution and dismissal: ‘making me out to be something I’m not’
Many participants had experienced being ‘dismissed’ (P1, P4, P5) by providers, or having their autism traits misattributed to other conditions: ‘I really thought, yeah, maybe she’s right. Maybe I don’t actually have autism and that I- I do just have social anxiety’ (P5). Even for those who were not dismissed or misdiagnosed, some had feared being ‘invalidated’ (P2, P9); ‘. . .what if I don’t meet the criteria? And then these people who I respect and they respect me. . ’. (P7), which influenced their diagnosis-seeking behaviour, including delayed diagnosis-seeking and avoiding ‘gatekeepers’ (P9) such as GPs. Misattribution and dismissal were believed to be associated with participants not fitting a ‘stereotype’ (P6) of autism due to their gender or presentation. For some participants, communication difficulties and sensory sensitives were misattributed to other conditions such as social anxiety and schizophrenia. After being misdiagnosed or dismissed, most participants accepted that they were not autistic, internalising notions that they were being ‘fussy’ (P1), a ‘hypochondriac’ (P10) or seeking an autism diagnosis ‘for attention’ (P4): ‘The GP. . . dismissed me, then I dismissed myself’ (P5). Such barriers delayed their journey towards diagnosis, often until another professional suggested they may be autistic. Many participants suggested that it is important for providers ‘just to believe them’ (P2) and to ‘refer them on’ (P10) if it is not their area of expertise.
Relationship between provider and person levels
Interpretation of the interview data showed that the person and provider levels were interrelated, reflecting relational elements in the diagnostic process (see Figure 1). Participants’ communication and behaviours influenced how providers responded to them, and vice versa. For participants to communicate their experiences and unmask, diagnosticians needed to provide them with a ‘safe space’ (P9). A safe space was created when providers were knowledgeable about autism, validated participants’ experiences and were responsive to sensory and communicative needs and preferences. In turn, when a safe space was available to participants, they described feeling more able to comfortably share their experiences and autistic traits: ‘I can’t just simply demask in front of normal people, but knowing that they were there, you know, in . . .some regard, you know, knowing of autism and knowing of health, whatever was kind of, was able to demask myself very, very easily’. (P10).
System level
The system level highlighted that diagnostic assessment occurred within the context of the Australian healthcare system, telehealth availability and dominant conceptualisations of autism.
Requirements of the assessment process: ‘it’s a very complicated, expensive kind of ordeal’
At the system level, the format of diagnosis was variable. Some participants experienced wait times up to 6 months and assessment processes up to 8 months, which was ‘mentally draining’ (P10): ‘It took a long time on a waiting list’ (P1). In addition, some participants were assessed in-person and some online. Online assessment, including email and videoconferencing, gave participants access to experienced diagnosticians located interstate and was a more ‘comfortable’ (P4, P9) experience: ‘I think I can express myself a lot better when it’s online’ (P2). However, although helpful for unmasking, one participant noted that videoconferencing made it difficult for the diagnostician to observe full body movements or ‘anything that [they] would normally do in person’ (P4).
The cost was perceived as a barrier by most participants: ‘I had to take a loan on my pension, and I’m still paying that off’ (P6). Participants noted that ‘none of the diagnosing sessions were under Medicare’ 2 (P3), and that they felt the cost required ‘needs to improve’ (P8). Despite the cost, several participants avoided using the public healthcare system and deliberately bypassed GPs when seeking a diagnosis, concerned about encountering barriers and gatekeeping described by other autistic women: ‘The waitlist on the public system is really long and I’ve heard lots of negative stories about that’ (P2); ‘I don’t think I’d have got a good response from my GP, which is why I didn’t go to him’ (P9).
Several participants believed that the diagnostic criteria, and some assessment tools based on these criteria, were a barrier to autism diagnosis because they were ‘not moulded to fit females’ (P10) or not ‘Aspie-friendly’ (P6): ‘The way they phrased it was all about like, “Do you have a special interest such as trains or . . . mechanics or like math” . . ’. and I can see how that was gender skewed in a way’ (P4). Questionnaires ‘specifically related to women’ (P2) or modified for clarity were used during assessment for some participants and generally perceived as helpful. However, one participant expressed that she related to a more traditional ‘male’ (P6) presentation and that if given a ‘female’ (P6) questionnaire, she would have doubted her autistic identity. One participant noted that ‘I’d want . . . a different set of questions and you can choose between which questionnaire you would want to do based on how you felt it would be appropriate’ (P4) rather than being assigned a questionnaire specific to women or men only. Overall, assessment tools that did not acknowledge diversity in autism presentation were perceived to be a barrier.
Discussion
The aim of this study was to explore Australian autistic women’s experiences of what helped and hindered throughout the autism diagnostic process, focussing on person, provider and system levels. Semi-structured interviews were conducted with autistic women and framework analysis was used to analyse the interview data, focussing on factors at each level that helped and hindered. Person-level factors impacting the diagnostic process included the woman’s recognition of their autism, motivation, preparation, social support and approach during the assessment. Provider-level factors related to providers’ knowledge and skill in working appropriately with autistic women, and their misattribution or dismissal of women’s autistic traits. Interactions between person and provider levels highlighted that the diagnostic process is relational, whereby the qualities and actions of one party influences the other. System-level factors included the requirements of the diagnostic process (time, financial costs, technology) and the nature of diagnostic criteria and assessment tools. These factors provided the context in which person-level and provider-level factors operated.
Personal factors that facilitate the diagnostic process
This study contributes to the literature by highlighting the conditions under which the diagnostic process is initiated and made easier, particularly at the person level. For the women in this study, an initial event such as their child’s diagnosis, or a provider suggesting they might be autistic prompted them to learn more about autism, improving their knowledge and self-awareness. In addition, women explained that having financial resources, social support, a strong ability to find information and navigate the healthcare system and personal qualities of persistence and resilience helped them have a positive experience of diagnosis. These facilitating factors are in line with the abilities and resources that make accessing healthcare in Australia, in general, easier (ABS, 2019b).
Another factor that enabled diagnosis was some women’s ability or effort to unmask during assessment. Not only might masking prior to diagnosis contribute to women’s autism being missed (Lehnhardt et al., 2016; Zener, 2019), masking (or unmasking) also impacts women’s experiences during assessment. Given past research has found that women self-report more autistic traits than clinicians report from observation (Lai et al., 2017), it is not surprising that unmasking was perceived to assist in obtaining a diagnosis. Unmasking to obtain an autism diagnosis requires conscious vulnerability (Harmens et al., 2022). As the assessment process is relational, skilled providers may be able to create a safe space where this vulnerability can take place.
Communication during the diagnostic process
Communication-related barriers and facilitators spanned person, provider and system levels. Literal interpretation, black-and-white thinking and difficulty communicating experiences verbally were commonly mentioned by participants. As highlighted by one participant, there is an irony in being required to communicate to be diagnosed with a communication-related condition. Several communication facilitators were highlighted, including preparing notes, taking notes during the assessment process and online assessment using email and videoconferencing. Communication has been identified as playing an important role in experiences of both the diagnostic process and healthcare access generally in previous research (de Broize et al., 2021; Nicolaidis et al., 2015; Raymaker et al., 2016), and this study builds on this by exploring communicatory facilitators.
Personal communication challenges can be reduced or exacerbated by how providers communicate. Providers’ responsiveness to participant preferences impacted how the women communicated. This interaction between person- and provider-level factors regarding communication was also found by Nicolaidis et al. (2015) when exploring barriers to healthcare generally. In this study, it was helpful when providers facilitated communication by being transparent and clear, and offering written communication or modified (i.e. clearer) assessment measures. Existing tools for autistic individuals to enhance access to healthcare include some of the enabling elements identified in this study, at the person level (preparation and written communication) and provider level (transparency about processes and requirements; Amaze, 2020; Nicolaidis et al., 2016). The development of a tool specific for navigating the diagnostic process is likely to be helpful.
(In)validation during the diagnostic process
Women in this study were motivated to pursue a formal autism diagnosis when they perceived it as valuable, which was often related to the validation of their challenges and identity. Building on previous research examining the importance of an online autistic community (Parsloe, 2015), in this study, communities of autistic women played an important role in providing information about the diagnostic process, validating their autistic experiences and helping women build confidence in their self-knowledge. In addition, women carefully researched and selected a diagnostician to maximise their chance of experiencing validation. While past research has found that an autism diagnosis can result in validation and self-understanding (de Broize et al., 2021; Harmens et al., 2022; Leedham et al., 2020), this study has identified that efforts to allow validation are an important part of the diagnostic process itself. For some women, their pre-diagnosis personal narrative involved internalised shame and the assessment helped them take a more self-compassionate stance.
The importance of validation in the diagnostic process underscores how problematic it is that invalidating experiences such as dismissal and misattribution is common for autistic women (Bargiela et al., 2016; Gesi et al., 2021; Leedham et al., 2020). Fear of dismissal has been found to be a barrier to seeking diagnosis (Lewis, 2017). This study, alongside other qualitative research (e.g. Bargiela et al., 2016; Leedham et al., 2020), suggests such fear is often justified. In this study, GPs’ dismissal of women’s suspicion they might be autistic and a failure to refer for assessment were described as barriers that delayed autism diagnosis, corroborating previous findings (Bargiela et al., 2016). Given many GPs have not received formal training in autism and have limited confidence in working with autistic patients (Unigwe et al., 2017), it is discordant for these providers to have such an influence on women’s diagnostic experiences. Furthermore, women in this study suggested that being a woman might increase the likelihood of being dismissed by providers. Women’s healthcare concerns tend to be dismissed more frequently than men’s in the healthcare system generally (Angus et al., 2013; Mizock & Brubaker, 2021).
Gender and the diagnostic process
There were several barriers and facilitators that participants described being related to their gender. First, providers with an understanding of the diverse presentation of autism across genders facilitated the diagnostic process. However, past research has found that such providers are difficult to find (Lewis, 2017). Second, like in previous research, the discrepancy between autistic women’s presentation and dominant stereotypes of autism (Lai & Szatmari, 2020) posed a barrier to diagnosis (Huang et al., 2022). Without appropriate education regarding the heterogeneity of autism (Ruigrok & Lai, 2020), particularly in relation to gender, providers may rely on stereotypes and dismiss or misattribute women’s autistic traits. Third, participants suggested that diagnosis was more difficult to access as the diagnostic criteria and tools were not based on women (Kirkovski et al., 2013; Young et al., 2018). This builds on recent qualitative research that found women were concerned that diagnostic criteria would not identify them, which deterred them from seeking diagnosis (de Broize et al., 2021; Harmens et al., 2022). Assessment tools tailored to autistic women are being developed (e.g. Clarke et al., 2021), and several participants in this study were assessed using such tools, which they experienced as helpful.
While it may be beneficial for healthcare providers to know about the presentation of autistic women, and for gender to be considered when developing assessment tools, care should be taken to not create new stereotypes that may inadvertently exclude individuals (Strang et al., 2020). Encouraging stereotypes of autism based on binary genders may perpetuate accessibility obstacles, posing a barrier to diagnosis for those who fall outside of those gendered presentations (Pearson & Rose, 2021). The aim should be to promote inclusion across gender diversity by ensuring awareness of the heterogeneity of both autism and gender.
Limitations of this study
There are several features of the sample in this study that are important to note. Most of the women in this study were White, lived in a major city and were tertiary educated. Women outside of these parameters may have different experiences and potentially face unique barriers to autism diagnosis (e.g. diagnosticians may be less available in regional areas). In addition, this study included only formally diagnosed autistic women. Self-identified undiagnosed autistic individuals may have identified additional barriers to diagnosis and/or reasons why diagnosis might not be pursued. These sample characteristics are important to consider in relation to the transferability of the findings of this study (Maxwell & Chmiel, 2014).
Practical implications of the current findings
This study highlighted several opportunities for improving the autism assessment process for women. Resources that aid women’s preparation for diagnosis should be developed, including information about what the process entails, how to connect with other autistic women and diagnosis-related questions to reflect on before their appointment. Whether targeted resources are available or not, providers should communicate with clarity and transparency, ensuring clients know what to expect.
In addition, there is a need for provider education regarding the heterogeneity of autism, the diversity of autism presentation across the gender spectrum, and the barriers faced by women during the diagnostic process. Providers who are likely to be first asked about suspected autism, such as GPs, are an important group to target. It might also be beneficial for providers to consider the use of questionnaires and assessment tools tailored for women in their practice. Diagnosticians should also consider the feasibility of telehealth autism assessment to increase the accessibility of their services (Gibbs et al., 2021).
Directions for future research
Given the role of stereotypes in women’s experiences, it is reasonable to speculate that other groups of autistic people whose profiles conflict with traditional stereotypes of autism may also experience unique barriers to diagnosis. Research exploring the barriers and facilitators to diagnosis in other population groups, such as non-binary individuals, is warranted, particularly since there is a high level of gender diversity within autistic populations (Sala et al., 2020). Future research on this topic should also aim to include a diverse range of autistic individuals, from a variety of demographic and socio-educational backgrounds.
Finally, future research should focus on the development and evaluation of resources to help women navigate the diagnostic process, and resources to educate providers on diverse presentations of autism and how to work with autistic women. Findings from this study indicate this occurs informally within the autism community, who provide information and validation to women seeking a formal diagnosis, which, given the opportunities to create belongingness for those seeking a diagnosis or newly diagnosed, would be valuable to explore further. It may be constructive to investigate GPs’ knowledge of autism and gender and their process of clinical decision-making regarding the referral of women who suspect they are autistic for assessment and support.
Conclusion
This study contributes to an emerging body of research focussed on understanding autistic women’s experiences of diagnosis, revealing factors that have helped women to successfully access an autism diagnosis as well as barriers that have delayed or made the process more difficult. Barriers and facilitators were captured on person, provider and system levels, and person–provider interactions were evident. Given the significant impact that accessing an autism diagnosis can have on women’s self-acceptance and mental health, continued research and resource development in this area are important.
Supplemental Material
sj-docx-1-aut-10.1177_13623613221117911 – Supplemental material for Women seeking an autism diagnosis in Australia: A qualitative exploration of factors that help and hinder
Supplemental material, sj-docx-1-aut-10.1177_13623613221117911 for Women seeking an autism diagnosis in Australia: A qualitative exploration of factors that help and hinder by Sarah Murphy, Rebecca L Flower and Rachel Jellett in Autism
Supplemental Material
sj-docx-2-aut-10.1177_13623613221117911 – Supplemental material for Women seeking an autism diagnosis in Australia: A qualitative exploration of factors that help and hinder
Supplemental material, sj-docx-2-aut-10.1177_13623613221117911 for Women seeking an autism diagnosis in Australia: A qualitative exploration of factors that help and hinder by Sarah Murphy, Rebecca L Flower and Rachel Jellett in Autism
Footnotes
Acknowledgements
Special thanks to Danielle Croaker for her time and contribution to this project as an autistic advisor.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship and/or publication of this article.
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Notes
References
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