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Abstract

Early diagnosis for autistic youth is critical in improving quality of life. However, diagnosis is typically delayed for assigned females at birth (AFAB) and gender-diverse individuals, with their autism-related struggles being overlooked. The current study utilizes semistructured interviews with autistic adults to explore how gender identity and socialization impact diagnostic odysseys. As such, we examined the following research questions: (1) What are the female and nonbinary experiences of pursuing an autism diagnosis, and how do they provide an alternative narrative to a normative male experience? (2) What was the experience like receiving and coping with an autism diagnosis? Qualitative interviews were conducted with 24 autistic adults identifying as nonbinary, agender, or genderfluid (n = 14), female (n = 8), and male (n = 2). Coding used reflexive thematic analysis, informed by tenants of gender socialization roles and the feminist disability model. Participants reported experiencing clinician bias within the mental health system, being mislabeled, having difficulties navigating the diagnostic system, and masking to compensate prior to diagnosis. This study provides a greater understanding of diagnostic trajectories and the intersection of gender socialization with their coping strategies for navigating life without a diagnosis. This informs future practices in reducing diagnostic biases and the toll of compensatory mechanisms used in the interim.

Lay Abstract

Early diagnosis of autism can greatly improve the lives of those affected. However, for individuals assigned female at birth (AFAB) and those who are gender diverse, this diagnosis often comes much later. This delay is because their autism-related challenges are frequently overlooked by healthcare professionals.

Our study aimed to understand how gender identity and social experiences influence the journey to receiving an autism diagnosis. We interviewed 24 autistic adults to learn about their personal experiences. Among them, 14 identified as nonbinary, agender, or genderfluid, 8 as female, and 2 as male. We wanted to know how their gender affected their pursuit of a diagnosis and how they coped with life before and after being diagnosed.

Participants shared that they often faced bias from clinicians, were misdiagnosed, and had trouble navigating the diagnostic system. Many also talked about “masking” their autism symptoms to fit in, which was exhausting and challenging. Our findings highlight the unique struggles these individuals face and show how gender socialization plays a role in their experiences.

By understanding these diagnostic journeys, we hope to reduce biases in the healthcare system and improve support for AFAB and gender-diverse autistic individuals. This research aims to ensure that future practices are more inclusive and sensitive to the needs of all autistic people, leading to earlier and more accurate diagnoses and better overall support.

Keywords

autism diagnosis disparities gender genderqueer

Introduction

Early diagnosis for autistic youth is critical in improving quality of life, including access to opportunities and support services (Brasher & Stapel-Wax, 2020; Gabbay-Dizdar et al., 2022) as well as improved self-esteem-based personal identity development (Corden et al., 2021) and earlier intervention and support (McQuaid et al., 2024). Yet, many children do not receive autism diagnoses until later childhood, adolescence, or adulthood, with many of these late-diagnosed autistic individuals receiving multiple alternative diagnoses prior to autism (Davidovitch et al., 2023).

Diagnosis is typically more delayed for female and gender nonconforming autistic youth, with their autism-related struggles commonly going overlooked or misdiagnosed in childhood and later identified in adulthood (Lai & Baron-Cohen, 2015). Specifically, seeking an autism diagnosis is often an expensive, long, and difficult process, due to the overall lack of resources available, with around 90% of individuals waiting 13 weeks for an adequate referral in the United Kingdom. However, even in adulthood, diagnosis is particularly difficult to obtain for autistic women and gender nonconforming individuals. Bargiela and colleagues (2016) found that late-diagnosed autistic women found health professionals were unfamiliar with the signs of autism in women and these women felt a pressure to move away from autistic behaviors to conform to societal expectations of femininity, potentially obscuring identifiable signs of autism. With this, the concepts of gender socialization, or the implicit and explicit processes that shape the performance behind the social role of gender, have begun to emerge. Similarly, gender nonconforming individuals reported healthcare professionals demonstrated a lack of knowledge and understanding about the intersection between gender identity and autism, and they experienced subsequent difficulties obtaining a diagnosis (Bruce et al., 2023). In the current study, the implications of this diagnostic bias will be explored through the perspectives of female and gender nonconforming and nonbinary autistic individuals who received a late autism diagnosis in adulthood.

Autism as historically male

Autism is identified primarily in males,¹ with a ratio of 4:1 males to females diagnosed in childhood (Kirkovski et al., 2013; Loomes et al., 2017). This diagnostic disparity may be attributed to autism's traditional conceptualization as a male disorder, with the vast majority of research focusing on autistic boys (D’Mello et al., 2022). Explanations for this disparity vary from gendered dispositions to clinician bias (Lai et al., 2015). However, this discrepancy likely begins with early researchers studying white male children nearly exclusively, theorizing that the autism may be caused by an “extreme male brain,” or individuals who are better at systemizing rather than empathizing (Baron-Cohen et al., 2005; Ridley, 2019). This theory has come under scrutiny, as this idea of an “extreme male brain” may work to the detriment of female autists, biasing clinicians toward searching for masculinity in association with autism (Krahn & Fenton, 2012). This concern is not unfounded, as the overwhelming bias towards perceiving autism as a ‘male’ trait contributes to the under identification of autism in girls (Estrin et al., 2021).

Late diagnosis for female autistic adults

Sex differences in the rates of co-occurring mental health difficulties may also play a role in the diagnostic rates of females and males. While autistic females report higher rates of internalizing disorders, such as anxiety and depression (Tanner et al., 2007), they report lower rates of externalizing disorders, such as conduct disorder and addiction—in complete contrast to their male counterparts (Lundin et al., 2021; Napolitano, 2022; Tanner et al., 2007). Fewer externalizing difficulties in autistic female individuals may contribute to referral bias (Dworzynski et al., 2012; Mandy et al., 2012; Posserud et al., 2018), while the co-existing internalizing difficulties may make it more difficult to identify autism, leading to misdiagnosis, or delayed diagnosis (Kentrou et al., 2021; Leedham et al., 2020). It has also been found that autism may have an additive effect on internalizing difficulties in females (Schwartzman et al., 2022).

This delay in diagnosis has marked effects on quality of life and service receipt. Females reportedly experienced a greater delay in receipt of mental health services and an older age of initial autism diagnosis compared with males (Gesi et al., 2021). Autistic females were also more likely to be initially misdiagnosed, a potentially dangerous error that can result in improper treatment. Autistic women are 3.8 times more likely than autistic men to receive their autism diagnosis after mental health diagnoses (Belcher et al., 2022), with 66.5% of a sample of 161 late-diagnosed participants received one or more different diagnoses before autism (Fusar-Poli et al., 2022). Bargiela and colleagues (2016) found that late-diagnosed autistic females experienced years of family and medical professionals dismissing their concerns, refusing to believe they were autistic, and experiencing stereotypes about autism lobbied against them (Bargiela et al., 2016). Autistic women described their experiences trying to navigate the arduous road to receiving a diagnosis as fraught with obstacles, resulting in an ongoing confusion about their identity and life experiences (Leedham et al., 2020).

A delayed diagnosis can contribute to poorer mental health and decreased well-being. In a study of late-diagnosed adults, Stagg and Belcher (2019) reported on the experience of growing up autistic without a formal diagnosis or understanding of their autistic identity. Participants experienced anxiety and depression and feelings of isolation. Consequently, many feel an intense need to “mask,” or conceal authentic autistic behaviors from those around them, creating through necessity a false persona through which these women found it tolerable to interact with the world (Seers & Hogg, 2023).

Late diagnosis for gender-diverse autistic adults

While there is less research identifying the diagnosis journey of autism in gender-diverse youth, there is extensive evidence that gender variance is more common in autistic individuals. Across multiple studies, autistic youth were over seven times more likely to express gender-diverse identities compared with their neurotypical same-age counterparts (Janssen et al., 2016; Strang et al., 2014). Autism research in gender has not typically focused on gender-diverse individuals, instead focusing on sex assigned at birth (McQuaid et al., 2024). This lack of differentiation of gender identities when studying autism is particularly problematic, given the high rates of autistic gender-diverse individuals. Furthermore, gender-diverse autistic youth are at increased risk for a myriad of co-occurring conditions, including mental health challenges and physical and sexual abuse (Brown et al., 2017; Ohlsson Gotby et al., 2018).

Compared to both binary female and male autistic individuals, any other gender is associated with later autism diagnoses (Huang et al., 2021; McQuaid et al., 2024). While there may be multiple reasons for this delay, gender-diverse autistic individuals report that healthcare professionals display a poor understanding of the intersection between gender and autism (Bruce et al., 2023). Gender-diverse autistic people must contend with the additional layer of doctor's failure to grasp gender identity issues as well as lack of medical fluency with autism. In addition to bias against disabilities, medical providers are reported to turn away LGBTQ+ adults more frequently than straight and cisgender adults (Hall et al., 2020).

Despite the importance of addressing the issues of late diagnosis and experiences for autistic women and gender-diverse individuals, the research on this topic is surprisingly sparse (McQuaid et al., 2024). Furthermore, even fewer studies emphasize or elevate the voices of the autistic community themselves (Gowen et al., 2019). This disconnect can lead to distrust of researchers in the autistic community, as well as a failure on the part of research to connect research aims to the priorities of the autistic community (Keating, 2021). As a result, there is a call for community involvement in research, emphasizing autistic people's integration into both in the research process and as participants, with the goal of creating research that is beneficial to the communities it studies (Fletcher-Watson et al., 2019). Therefore, research both involving and focusing on the lived experiences of autistic individuals is warranted.

The current study

While there are several studies that examine the intersection of gender and late diagnosis (e.g., Huang et al., 2021; McQuaid et al., 2024), these studies primarily examined the date of diagnosis, rather than delving into the intricacies of when the individual themselves came to realize their own identities, the experience of this late diagnosis and how it impacts their lives, and how their gender identity and gender socialization played a role in their journey to their autistic identities. The male diagnostic trajectory in autism is the established standard (Mandy & Lai, 2017); therefore, this study explores any gender identity other than cisgender male to explore the alternate paths female and gender-diverse individuals experience. As indicated in the footnotes, the female and gender-diverse experiences are distinct and varied even within these categories. However, as certain similarities recur across relevant literature (e.g., late diagnosis, misdiagnosis, and lack of adequate resources), the current study examines both experiences in contrast to the standard male diagnostic trajectory. The current study utilizes qualitative interviews with autistic adults of varying genders to explore their experience of their diagnostic odysseys, following the following research questions:

What are the female and nonbinary experiences, compared to a normative cisgender male narrative, of pursuing an autism diagnosis?

What was the experience of receiving, coping, and celebrating an autism diagnosis?

Methods

The present study examined the experiences of autistic adults who received or self-diagnosed autism. This qualitative study used brief semistructured interviews to establish the experiences of autistic adults depending on their gender identities, specifically shedding light on the diagnostic experiences of individuals assigned female at birth.

Participants

Participants were 24 autistic individuals with a clinical diagnosis of autism (n = 16) or self-diagnosed autism (n = 8). While at least one of the self-diagnosed participants has now been formally diagnosed, this was a characterization of the individuals at the time of the interview. Participants identified as nonbinary, agender, or genderfluid (n = 14), female (n = 8), and male (n = 2). Since recruitment was not limited based on gender, the two male participants made up a minority of our sample and were not included in the research question for this manuscript. While one of our participants had multiple identities, she identified the primary/host self as female, so we counted her demographically as female despite having multiple identities. Our sample was majority white (79%) and highly verbal individuals, despite speaking ability not being a part of the inclusion criteria as written interviews and responses were offered as options for all the participants. Inclusion criteria for the present study included: (1) living in the United States, (2) being at least 18 years old, and (3) identifying as autistic. Both clinically diagnosed and self-diagnosed individuals were invited to take part in the study to ensure greater discovery of the barriers faced by individuals trying to get a diagnosis as well as inclusion of individuals assigned female at birth who may be misdiagnosed. Participant information can be found in Table 1. Names have been changed for anonymity.

Table 1.

Participant characteristics.

Participant ID	Age	Gender identity	Pronouns	Ethnicity	Age of diagnosis	Formerly diagnosed/self diagnosed
Henry	31	Male	He/him	White	26	Formally
Harper	21	Nonbinary	They/them	White/Caucasian	20	Formally
Eleanor	20	Female	She/her	White/European	20	Formally
Charles	33	Male	He/him	White	33	Formally
Amelia	18	Female she/her (uncertain)	She/her (uncertain)	White/European American	17	Formally
Ari	18	Agender/Nonbinary	They/them	White	16	Formally
Evelyn	41	Female	She/her	Scottish/Irish	N/A	Self-diagnosed
James	22	Nonbinary	They/them	Middle Eastern	18	Formally
Rosalie	19	Female	She/her	White	11	Formally
Avery	29	Degendered/gender fluid	They/them	Caucasian	28	Formally
Katherine	47	Female (core/host self)	She/they	White/Caucasian	N/A	Self-diagnosed
Alex	27	Nonbinary/agender	They/them	Ashkenazi Jewish	N/A	Self-diagnosed
Isabella	20	Female	She/her	Hispanic, Latino, and White	17	Formally
Doug	21	Transmasc Nonbinary	He/they	White, non-Hispanic	N/A	Self-diagnosed
Blake	18	Gender fluid	They/them	White and Hispanic	18	Formally
Finley	19	Nonbinary	They/them	White	N/A	Self-diagnosed
Wendy	39	Female	She/her	Vietnamese	N/A	Self-diagnosed
Ellis	38	Agender	They/them	White, non-Hispanic	N/A	Self-diagnosed
Jordan	28	Genderfluid	Any	White	27	Formally
Samara	24	Female	She/her	White	21	Formally
Rowan	20	Nonbinary/agender	She/they	Latino	18	Formally
Ash	19	Trans Nonbinary	Any	White	N/A	Self-diagnosed
Morgan	31	Nonbinary	They/them	White	29	Formally
Taylor	24	Transmasc Nonbinary	They/them	White	19	Formally

Procedure

Autistic individuals were recruited via two routes: social media recruitment and distribution of IRB-approved fliers via email. Participants were invited to schedule a 30-minute Zoom interview (M = 19.07). In one circumstance, the interview questions were answered via email due to internet failure. Participants received interview questions and the study information sheet prior to their interview, in line with AASPIRE suggestions of providing an accurate representation of the interview (Nicolaidis et al., 2019). Verbal or written consent was obtained at the beginning of each interview. Participants were provided the option to keep their videos off depending on preference, which the interviewers matched. One or two researchers were present during interviews. Ethical approval was obtained from the Institutional Review Board at the University of California, Los Angeles.

Measures: interview questions

An interview guide was used for the semistructured interviews (see Appendix A), covering the following topics: receiving or attempting to receive an autism diagnosis, gender identity, and later life diagnosis. Questions were designed by the research team, informed by previous research in the field, and open ended to allow for follow-up questions and more specific inquiries as research topics came up during discussion.

Qualitative coding frameworks. Two coding members of the research team used thematic analysis (Braun & Clarke, 2006; Braun & Clarke, 2019; Braun & Clarke, 2022) methodology that was informed by the tenants of gender socialization and gender role theories. Our analysis reflected the common themes within participants’ lived experiences and the introspection of their own diagnostic trajectories, connecting individual experiences to theoretical explanations by critically examining the impact of gender socialization. As gender socialization is present in both internalized and unconscious thought as well as explicit social processes (Sibley & Harré, 2009), this process allowed us to frame the impact of gender socialization empirically, grounded in individuals’ experiences. Furthermore, designing our research with a phenomenological perspective allows for an understanding from both the participant and researcher of the retrospective reports leading up to the participants’ present understanding of their autism.

Our study utilizes the feminist disability model as the theoretical framework for data analysis, which acknowledges that gendered constructs for females and social constructs of disability are often positioned as the “other,” which is then exacerbated at the intersection of the two (Garland-Thomson, 2002). These theories allow for the challenging of the current societally gendered understanding of autism and take a subjectively epistemological perspective on gender and social norms that are derived from gender.

Data analysis

All interviews were recorded, transcribed verbatim, and coded using a qualitative data analysis software, Dedoose (Dedoose Version 9.0.23). The interview data was examined after each interview, to identify themes and adjust interview questions based on the responses. After the first 10 transcripts were coded and the majority of themes were created, two coders compared codes to finalize themes and sub-themes. Themes were then checked after three more coded transcripts to ensure coherence, consistency, and clarity. Following this reliability process, the primary coder coded the remaining transcripts. The secondary coder examined the codes for reliability and reached a final consensus on the codes. They reviewed the transcripts one final time to reach “theoretical sufficiency” (Dey, 1999), that being the point where the researcher can claim that all the code categories are the ones suggested by the data itself. While traditional thematic analysis does not always utilize reliability coding, ensuring consistency among coders and similar understanding of themes across researchers with different identities and positionalities was deemed critical in ensuring the participants were being fairly represented.

Reflectivity, positionality, and community involvement statement. The primary researcher on the team identifies as a cisgender and neurodivergent female of color. The rest of our research team identifies as cisgender and both neurodivergent and neurotypical. As such, the research design, implementation, interpretation, and dissemination of findings was carried out by members of the autistic and nonautistic community. Before submission, member checking was conducted with all participants, where member feedback was iterative and allowed for multiple rounds of feedback, discussing topics of gender socialization and differentiating the experiences of female and gender-diverse participants.

Findings

Theme 1: The diagnostic process

The mental health system and clinician bias: “I got mislabeled.”

As a result of a lack of recognition of autism, participants often sought mental health support through other avenues and were subsequently diagnosed with other disorders. These ranged from mood disorders like depression and bipolar disorders, to other forms of neurodiversity like ADHD. High rates of mental and emotional health struggles are common in the intersection of autism and gender, with gender-diverse individuals reportedly at higher risk than cisgender autistic individuals for a range of mental health issues (Strauss et al., 2021). One participant explained the multiple diagnoses represented a clear failure of the diagnostic system in capturing their experiences:

We get diagnosed with a really horrible mental health disorders like bipolar personality disorder or borderline personality disorder when we actually don't have them. We just have autism, and you know [psychologists] are less apt.—Evelyn (she/her)

This experience would directly impact Evelyn's trust in the mental health system, a sentiment directly discussed by multiple other participants in the study. The idea of distrust in the mental health system evoked a sense of repeating of history, which exhibited how women were often subdued by unethical psychological procedures to subvert them to their roles of being calm, cooperative, and attentive to domestic affairs (Tone & Koziol, 2018). Recent examinations of interactions with healthcare professionals echo this historical mistreatment, with non-autistic and cisgender clinicians disbelieving or stigmatizing patient gender identities (Glaves & Kolman, 2023). The lack of support often resulted in bargaining with the diagnostician, with one participant reporting “I was open to not having [a diagnosis] if he provided a reasonable explanation, but since his explanation didn't make sense, I wasn't satisfied” (Harper, they/them). One participant expressed their distress about the system:

I got mislabeled the fuck out of everything. They also didn't see my complex PTSD. I was really scared to tell them about like any self-harm, or any attempts, or anything like that, because I was like, I’m going to be taken away. Like I would like to tell? social workers about being abused… but I somehow knew that I would be taken away, and it'd be worse, so I was like, okay. I just have to like to hide that part.—Morgan (they/them)

Morgan's quote highlights the serious consequences for gender-diverse individuals who are inaccurately diagnosed. Queer (Eliason & Schope, 2001) and disabled (Dew et al., 2008; Kaushansky et al., 2017) individuals are likely to avoid disclosure of personal identities to medical professionals out of fear of clinicians making stereotyped and heteronormative assumptions Morgan's concern is felt among many autistic and gender-diverse people, with one study finding that participants feared their gender identities being seen by doctors as an “obsession” or “some autistic thing” (Strang et al., 2018). Morgan then discussed how this isolates them and their ability to receive adequate mental health care, which is common and necessary for many autistic adults to have as a service, but also may exacerbate the stress around any mental health difficulties.

Navigating the diagnostic system: Seeing the Paths Forward

Participants reported grappling with their own potential autism diagnoses, the stigma surrounding them, and expressed difficulty advocating for themselves. One review found that genderqueer people reported higher health needs than binary transgender individuals, indicating that this community may have higher unmet healthcare requirements and more difficulty accessing adequate healthcare compared even to other gender-diverse individuals (Scandurra et al., 2019). Participant experiences aligned with these findings, with Ash (they/them) discussing how impossible it was for them to navigate the healthcare system holding an intersectional identity. However, those who found too many barriers to the diagnostic process, mainly consisting of cost and time barriers, reported finding solace through their shared community.

[I was] getting on TikTok and I started to see autistic people who were either recently diagnosed or been autistic, their entire life. And then talking about their experience, and I was like, oh, my gosh… I was just like I've never heard autism discussed this way when I was growing up… If a child had autism, they were completely nonverbal, very out of control, considered violent, like no autistic child I ever met did not have violent episodes.—Avery (they/them)

Diagnosis, as Avery (they/them) recounts, was a light switch being flicked on that suddenly cast their struggles in a different light—as a difficulty, rather than a deficit. This experience falls in line with research finding that diagnoses, despite how difficult the process is to navigate, can bring an immense amount of validation (Leedham et al., 2020). However, several participants felt that being officially diagnosed brought them no additional resources, as many reported just “learning how to deal with it” (Evelyn, she/her) and getting “absolutely nothing except a sheet of paper” (Rowan, she/they). As a result, self-diagnosis for autistic youth may be increasingly popular (Lewis, 2023), not just due to a wider representation on social media platforms about the autistic experience, but because this representation resonating with the lack of benefits a diagnosis brings for gender-diverse individuals. This is especially considering that diagnostic services can cost anything upwards of $10,000, an prohibitive amount for marginalized young people in the current economic environment. Participants who self-diagnosed revealed several other reasons for not wanting to have an official diagnosis. As one participant said,

As I explore my gender, if I ever want gender affirming surgeries, that could also be an issue. I really feel like the reason I would be seeking a diagnosis would be for validation more than to get accommodations just because I’m not sure what I would necessarily request that. I don't know how to…get for myself.—Alex (they/them)

Considering the known intersection of gender and autism, the lack of support for this individual was clearly a deterrent for seeking an official diagnosis. The intersectional identity of both gender diverse and autistic impact one another; as the difficulty with receiving gender-affirming care, such as Alex as well as others in the study cited that they wouldn't be welcome in countries for being autistic, such as Australia or New Zealand (Alex, Ellis), or run into barriers for being able to adopt children (Alex, Doug), speaking to how participants felt that poor social representations realistically leads to decreased service opportunities for both gender-diverse and autistic identities.

Theme 2: Consequences and compensation of diagnostic failure

Participants reported compensatory techniques in attempts to cope with their autistic traits. Individuals who are assigned female at birth (AFAB) expressed that they learned to mask as a form of internalizing their autistic traits—in particular, needing to stim and sensory difficulties. As one participant said:

I do believe that we're trained at a young age to mask. I think [for] females, AFABs, that's how we're taught at a very young [age] how to just mask our internal feelings, and that you're learning masking at a young age that can definitely hide autism, in the long term.—Evelyn (she/her)

As indicated by Evelyn, the relationship between masking, camouflaging, and internalizing autism symptoms was often due to the skills picked up by socialization as AFAB individuals. In addition to masking autistic symptoms, participants who discussed being socialized as female learned alternate masking strategies to socialize as a female while either concealing their identities or displaying signifiers of gender. Finding a feminine persona, as Avery says, was a way for them to skirt under the radar for an autism diagnosis for years.

I think one of the biggest things I've discovered is that I have taught myself most of my mannerisms, especially the feminine ones. I used to be an opera singer and I went into an audition in college …instantly [the director] was like, Why do you walk like for some kind of hulking dude? Comments like that throughout my life made me obsessively curate a persona and having that obsessively curated persona kept me from being diagnosed, and also really frustrated the hell out of people because they wanted to find something wrong with me…the minute someone commented on something because of how I was raised, I would go internally and tweak it and fix it. And yes, I was horribly depressed and miserable, and no one really was my friend.—Avery (they/them)

Avery expressed that being raised as a female already taught a level of masking that led to the self-fulfilling prophecy in Avery and many other participants’ cases. This isolating experience, as Avery discusses, aligned with utilizing camouflaging and scripting to create a person that helped them be taken seriously professionally and within their own life. As such, masking and consequences led to a poorer diagnostic trajectory, as masking leads to healthcare professionals and immediate supports to miss out on symptoms and experiences that need to be further addressed. This pipeline from intensive masking to mental health difficulties is well established (Alaghband-Rad et al., 2023; Chapman et al., 2022; Miller et al., 2021). However, considering the alignment of neurotypical values and societal values placed on females, these skills soon became transferrable to allow for these participants to get by—until they couldn't.

I was AFAB and learning to internalize. I was very smart. I just barely failed my second-grade assessment because I had learned to recognize cartoon facial expressions. If the eyebrows go [down and furrowed, resembling a V] that's anger, etc. Growing up undiagnosed and unaware wasn't great for my mental health and figuring out my quirks lost its importance to the professionals once I got suicidal.—Ari (they/them)

This participant spoke frankly about their experiences with the system—that the relationship between masking and mental health difficulties, a well-documented relationship (Hull et al., 2020), was also implicated in the idea that others failed to take them or their struggles seriously until participants hit a breaking point. Women, AFAB individuals, nonbinary people, and gender nonconforming individuals already struggle to be taken seriously in medical contexts (Kent et al., 2021), of which those who are impacted by social communicative difficulties that may make it more difficult to communicate needs may find this system even more difficult to navigate. For several participants, the need to mask happened far more in the social context, as their autism impacted their ability to make and connect to others. Some would “follow people so it looked like I had friends” (Rosalie, she/her) despite reporting having no friends growing up.

However, for participants, masking in social contexts is exhausting, and some found social interactions confusing which led to not “genuinely being [themselves]” (Jordan, any pronouns). This is in line with the higher prevalence of internalizing difficulties in gender-diverse individuals (Newcomb et al., 2020), which further impacts the already high co-occurrence of suicidality and mental health difficulties in autistic youth (Lai et al., 2019). Jordan reports that despite following the rules that others seem to have laid out as proper social etiquette in different situations, they didn't understand why things wouldn't work out the same way they would for everyone else:

I feel like for me it just kind of looked like observing whatever everyone around me was doing like in any situation. And then just trying to mimic that as best I could, but also like change it up slightly, so that it wasn't super obvious that I was copying the people around me, but just trying to learn, like the right level of talkativeness, and just like how to behave in certain situations, and also like with certain social groups, or whatever like, if somebody made a certain kind of joke and it like went over. Well, then, I would repeat that in like a different setting, and sometimes I feel like it wouldn't go the same way, and I would just be like, why do you? Why does this work for other people? And then I try to do it. It doesn't work the same way.—Jordan (any pronouns)

When reflecting on how this impacted their lives, some participants mentioned that learning they were autistic at an earlier age would have helped them develop better coping skills or help them cope with the way that others perceived and treated them (Doug, he/they). The lack of diagnosis can leave a sense of vulnerability, as undiagnosed individuals often then lack the support to understand complex social situations. For some, the lack of diagnosis significantly impacted their life course outcomes, as the lack of skills such as understanding people's intentions was discussed by one participant:

I think another thing I’m trying to work out and become better at is my boundaries, too, because I think my lack of awareness of people's intentions. I’ve been violated a lot in the past.—Wendy (she/her)

Wendy's experience with difficulty accurately judging others’ intentions was reflected by other participants. Rosie (she/her) discussed the missing of social cues and believing that others were her friends when they didn't perceive their relationship in the same way. These experiences reinforce the idea that social naivety is a key component to the vulnerability of autistic individuals who had not been taught to read intentions. This increased vulnerability can in some cases lead to higher rates of abuse for autistic individuals (Douglas & Sedgewick, 2023), especially women (Douglas & Sedgewick, 2023), and can be seen as a consequence of the lack of diagnoses and support (Bargiela et al., 2016).

As a result of these compensatory mechanisms to defend against vulnerability and social rejection, participants expressed how difficult it is to just be themselves, “instead of the socially acceptable version that I’ve learned to be over all these years” (Jordan, any pronouns). Due to the gendered stereotype of autism, masking impacts the freedom and mobility of AFAB and those socialized as female to experience and portray autistic traits, which reinforces the current stereotypes of autism. Participants describe the process of existence as being a balance—constantly wondering and worrying about whether they are too annoying or too much for the people around them.

General discussion and conclusion

The results of this study paint a stark picture of the consequences of late diagnosis and years or even decades of compensatory behaviors. The participants of this study enumerated their struggles in seeking an accurate diagnosis, their experiences being dismissed and misdiagnosed, and the ways they compensated for navigating a neurotypical world. The heavy costs of diagnoses, as well as the potential barriers existing diagnoses could put in place for gender nonconforming or trans individuals who may want to pursue gender-affirming healthcare illustrate the ways in which an autism diagnosis, while helpful, can also place an irrevocable burden on the person in attempting to seek further services. The extensive discussion of masking and femininity is particularly poignant, as multiple participants reported that years of attempting to modulate autistic behavior into socially acceptable conduct left these participants vulnerable to abuse and mistreatment (Douglas & Sedgewick, 2023).

Future directions

Understanding these individuals’ perspectives and experiences, both with pursuing diagnoses and gender socialization, is key to promoting better outcomes in female and gender-diverse autistic individuals. Despite these experiences being distinct and unique to each identity, the common thread of not following the standard male diagnostic trajectory implies the complexity of not fitting within a diagnostic stereotype. Earlier diagnosis is critical in improving life trajectories for this population (McQuaid et al., 2024). Dissolving clinician biases around a male-centric view of autism is essential for improving prospects of autistic gender-diverse and female individuals (Lockwood Estrin et al., 2021). Understanding the ways in which female and gender-diverse autistic people are uniquely vulnerable to bad actors through the intersection of missing social cues and social training leading to people-pleasing and submissiveness will help protect individuals with this intersectional identity. Future research should continue to pursue avenues of information-gathering from the community, incorporating the lived experiences of autistic women and gender-diverse individuals into the collective understanding of how to promote better outcomes and reduce abuse and maltreatment in this population. Additionally, future research should examine avenues of reducing clinician bias, promoting understanding of the myriad of ways autism can present in children and adults of all genders, and examine biases within the healthcare system that cause an autism diagnosis to be a potential barrier to accessing other avenues of healthcare. Finally, while this study collected the experiences of female and AFAB individuals, there are many nuanced differences in the autistic gendered experiences of cisgender females, nonbinary AFAB individuals, and trans women, among other genders. Future research may seek to collect each gender identity's experiences to gain more understanding into the differences in their experiences.

Future research may additionally examine the implications and health-related effects of masking. As masking was so frequently mentioned in relation to female socialization, as well as the noted deleterious health effects linked with heavy masking, future studies may focus on the intersection between feminine socialization and mental health disorders in the autistic community, as well as the health differences between cisgender autistic females and AFAB nonbinary or trans autistic individuals.

Limitations

While this study sought to represent the experiences of late-diagnosed autistic individuals, the sample presented in this study is not necessarily representative of the average experiences of this population. Furthermore, due to the format of a recorded interview, the perspectives of less verbal or nonverbal individuals could not be included. While this study focused on the depth of the experiences of this subset of participants, future research should pursue alternate avenues of participant recruitment and data collection that are inclusive of nonverbal autistic individuals.

Conclusion

This study provides a greater understanding of the experiences of autistic individuals who were diagnosed late in life, and the intersection of gender socialization with their coping strategies for navigating life without a diagnosis prior to discovery. This data will inform future best practices in reducing bias surrounding diagnoses of female and AFAB individuals, as well as a greater understanding of the toll of compensatory mechanisms used in the interim. Lastly, the contents of this study will add to the small but growing body of literature highlighting the voices of the autistic community and amplifying their priorities and needs in research.

Footnotes

Acknowledgments

The authors acknowledge the individuals who volunteered for this project. The authors are humbled by their generosity, their honesty, their resilience, and their passion. The authors thank the participants for their courage and for sharing their experiences with us.

Data availability

The data is not available in a public data repository due to the sensitive nature of personal details discussed in transcripts that may be personally identifiable. Several participants also expressed discomfort in having full transcripts being released.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Ethical approval and informed consent

This project was approved by the Institutional Review Board, and all participants provided consent in participation and publication of findings.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Ingrid Tien

Notes

Appendix

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“Creating a socially acceptable version of myself”: A qualitative thematic analysis of the female and nonbinary experience of navigating the autism diagnostic system

Abstract

Lay Abstract

Keywords

Introduction

Autism as historically male

Late diagnosis for female autistic adults

Late diagnosis for gender-diverse autistic adults

The current study

Methods

Participants

Procedure

Measures: interview questions

Data analysis

Findings

Theme 1: The diagnostic process

Theme 2: Consequences and compensation of diagnostic failure

General discussion and conclusion

Future directions

Limitations

Conclusion

Footnotes

Acknowledgments

Data availability

Declaration of conflicting interests

Ethical approval and informed consent

Funding

ORCID iD

Notes

Appendix

References