The Quest for Acceptance: A Blog-Based Study of Autistic Women's Experiences and Well-Being During Autism Identification and Diagnosis

Abstract

Background:

Although studies have found that autism is underdiagnosed in women and that autistic women have poorer well-being outcomes than men, less is known about autistic women's experiences with self-identification or diagnosis or how they feel such experiences affect their mental health.

Methods:

We explored autistic women's experiences of coming to recognize and understand themselves as autistic. We used data collected from blogs written by autistic women about their diagnostic or self-identification experiences. We were particularly interested in well-being, and how this contributed to, was affected by, and interacted with the identification and diagnostic process. We used thematic analysis to explore and document experiences described in blogs from 20 blogsites (representing the views of 23 autistic women).

Results:

Acceptance was a central issue. We developed themes of self-understanding and self-acceptance, being understood and accepted by others (including peers, clinicians, and others in the autism community), and the exhaustion resulting from trying to be accepted and be understood. These issues arose both when going through the diagnostic process, and after receiving a formal diagnosis.

Conclusions:

Diagnosis and identification may have both positive and negative effects on autistic women's well-being, with women often describing difficulties after diagnosis as stemming from facing male stereotypes of autism. We consider the implications of our findings for clinicians, researchers, and those who work with autistic women.

Community brief

Why was this study done?

Research shows that autistic women are under-recognized and underdiagnosed. This can lead to a lack of support. Other research indicates worse mental health outcomes in autism. Exploring the perspectives of autistic women could help us understand how diagnosis may relate to mental well-being.

What was the purpose of this study?

This study examined the experiences of autistic women. We focused on well-being, mental health, and the role of diagnosis. We wanted to gain insight into how to support autistic women to achieve positive well-being.

What did the researchers do?

The researchers read blogs from 20 blogsites, reflecting the views and experiences of 23 autistic women. Women were either self-identifying or clinically diagnosed. The researchers then used a qualitative research technique called “thematic analysis” to summarize what women often said about well-being and diagnosis.

What were the results of the study?

Acceptance and feelings of belonging were important. We developed three themes: (1) self-understanding and self-acceptance, (2) being understood and accepted by others, and (3) exhaustion. Study participants felt that diagnosis often helped them understand their needs and be kinder to themselves. Diagnosis also helped women make sense of what had happened to them in the past. Finally, it helped them connect with a community, and improved relationships. However, stereotypes of autism affected women's own acceptance of their diagnosis. In some cases, feelings that they did not fit an autism diagnosis led to imposter syndrome. They described the struggle for acceptance, before and after their autism diagnosis, as exhausting. They felt this exhaustion came from trying to hide their difficulties or having to explain why they did not fit stereotypes.

What do these findings add to what was already known?

These findings support research that has identified high levels of exhaustion in autistic women due to trying to hide their difficulties and conform to societal expectations. Our findings suggest that acceptance is important for autistic women's well-being after their diagnosis. Facing a lack of acceptance from others could impact on women's self-acceptance. This could disrupt the positive effects a diagnosis has for women's well-being.

What are potential weaknesses in the study?

In their blogs, women were remembering their experiences. Therefore, time may have impacted these women's views, and changed what is important to them. Our sample was limited as it did not include women who publicly identified as having intellectual disabilities, it only contained adult women (mainly aged 20–50 years), and it did not include nonbinary individuals. Experiences of autistic women who write blogs may be different from those of other autistic women.

How will these findings help autistic adults now or in the future?

We suggest that when women seek diagnosis, acknowledgment of the difficulties they have faced coping without the recognition of being autistic is crucial. Clinicians should be aware that women may mask their difficulties, and they should avoid minimizing underlying problems. This study suggests that challenging the stereotypes associated with autism and educating professionals about autism in women are highly important. Women may benefit from support after diagnosis that helps them to manage experiences of being told they do not appear autistic, or do not fit people's expectations of autism.

Introduction

Autistic women are consistently under-recognized, underdiagnosed, and thus unsupported.^1,2 Meta-analyses of screening studies in the general population indicate that although more men than women meet the criteria for autism, there are a substantial number of women who, if assessed, would receive an autism diagnosis. However, these women have not been identified, and have thus not got a formal clinical diagnosis.³ This particularly occurs for women and girls without co-occurring intellectual disability,⁴ perhaps because they are less likely to attract clinical attention. Furthermore, even where women and girls do receive a diagnosis, this is on average later than boys and men,^5–7 meaning that autistic girls and women go without appropriate timely support.

Multiple factors likely impede the diagnosis of autistic women and girls. First, diagnostic instruments have a gender bias, having been developed with largely male samples, and because autistic girls and women's presentation often differs from that of boys and men.⁸ This leads to challenges in being recognized as being autistic, and potentially experiencing disbelief or stigma from those around them when they receive a diagnosis (see Huang et al.⁹ for review). Partly because of these experiences and responses, and partly because of the sense of self-knowledge that can come from being diagnosed as autistic,¹⁰ the self-identification and diagnostic processes can be highly emotional for autistic people. This is especially the case for those coming to the realization in adulthood, who may be reframing their life histories through an autism “lens,” a process described as “biographical illumination.”¹¹

The increased presence of camouflaging among girls and women on the spectrum may further hamper clinical recognition of autism. Autistic people report camouflaging for a variety of reasons, including wanting to manage differences between their natural behavior and that of neurotypicals, to manage the demands of social situations, and to reduce conflict between their authentic self and societal attitudes.¹² Camouflaging is considered an important feature of the female autism phenotype.¹³ Our current article centers on women's experiences, but it is important to note that autistic people of all genders camouflage, and we should be wary of perpetuating a stereotype that camouflaging is specific to autistic women and girls.¹⁴

Although camouflaging in women and girls may allow many to “pass” in a neurotypical society, these coping strategies also have consequences: late-diagnosed autistic women report that camouflaging is emotionally draining and creates confusion over one's identity.¹⁵ Tint and Weiss¹⁶ discuss the “hidden hurt of maintaining the mask” regarding autistic women's experiences. The consequences of camouflaging include anxiety, stress, and exhaustion, with camouflaging levels having been shown to positively correlate with mental health problems for autistic women¹⁷ (though Cage and Troxell-Whitman¹⁸ and Hull et al.¹⁹ report associations between camouflaging and mental health that are not affected by gender, suggesting this should not be considered a phenomenon exclusive to women and girls).

Mental health is a priority in autism research, for all genders: autistic individuals are at a higher risk for comorbid mental health problems than the general population.²⁰ Considering women specifically, Sedgewick et al.²¹ found that autistic women are more likely to have anxiety and depression than nonautistic women, whereas autistic women and nonbinary individuals showed higher rates of mental health conditions than autistic men. Suicide rates in autistic women are higher than in other clinical and nonclinical groups²²: self-reported camouflaging measures significantly predict their psychological distress, and for a specific subsample of women with very high camouflaging scores, these also predicted suicidality. Females are more likely to report internalizing problems, whereas males more often have co-occurring behavioral problems.¹³

Concerningly, the women least likely to be diagnosed as autistic appear to be those at greatest risk of mental health difficulties: highest reported rates of depression are seen in autistic adults without intellectual disability.²³ Autistic people without an intellectual disability are at greater risk for death by suicide than the general population, and than autistic people with a co-occurring intellectual disability.²⁴ Recognizing autistic women could have important implications for addressing their co-occurring mental health problems (if not preventing them), as timely recognition as autistic can inform treatment approaches. For instance, adjustments are needed to cognitive-behavioral therapy approaches for treating anxiety in autistic people.²⁵

Overall, the current literature paints a picture of widespread underdetection of autistic women, mental health problems faced by autistic people, and the potential interaction between these two issues. Given this, examining autistic women's perception of the relationship between their mental well-being and getting an autism diagnosis may provide insight into how best to support autistic women to achieve good mental health. We thus aimed to explore the diagnostic/self-identification experiences of autistic women, focusing on their well-being and mental health. Our overarching questions were: what impact does identification and diagnosis have on women's mental health, and what impact does mental health have on women's diagnosis and identification?

One way to understand the relationship between autism diagnosis, mental health, and well-being is to look at this in autistic women's own words. Qualitative health researchers are using blogs,²⁶ and blogs offer access to naturalistic qualitative data.²⁷ As yet, there has been limited use of blog material by autism researchers. However, the autistic community has an active growing online community, and the internet provides a positive tool for autistic people to connect with others, articulate their experiences, and advocate for acceptance.^28,29 For example, Kim and Bottema-Beutel³⁰ analyzed the blog posts of 9 autistic bloggers to investigate online narratives about stimming, and Welch et al.³¹ analyzed 40 blogs written by autistic bloggers to examine embodiment in autism. It is clear from these projects that blogs by autistic people can offer a rich “insider view” of the autistic experience. However, such studies are few, despite blogs offering unique and interesting opportunities: unlike qualitative data collected through a traditional interview or survey, the data are created by bloggers outside the influence of a research team. The blogs were not created in response to researcher questions but represent things important enough to the bloggers for them to want to write about. Analyzing such media offers a complementary way to study people's experiences, with less direct impact of the researcher (though they have an important role in selecting and synthesizing these data). A secondary aim of this article was thus to test the utility of blogs written by autistic individuals for researchers interested in their experiences.

Method

In addition to the methodological details here, to supplement this article and support researchers who might want to explore using blogs for future research, we have created a document generally introducing this blog-based approach, including considerations for ethics and research question fit (Supplementary Data S1).

Blog search strategy

We searched for blogs using MetaCrawler, using the search terms “autism blog.” MetaCrawler is a metasearch engine that aggregates the results of what would have been returned from multiple separate specific search engines, thus offering better web coverage.³² Our preagreed criteria to decide which blogs were included in our analysis were that the blogger (1) was writing from a first-person perspective (i.e., not written by nonautistic parents), (2) identified as female, (3) was over the age of 18 years, (4) wrote in English, and (5) discussed the process of realizing they were autistic and pursuing a diagnosis. We anticipated that some women would face barriers to obtaining a formal diagnosis, and we could not check the veracity of bloggers saying that they had been clinically diagnosed; thus, we decided that bloggers who self-identified as autistic would also be included. We included blogs found on blog compilation sites or that were referred to through another site. We excluded any blogs where the author team felt there was doubt as to whether the blog should truly be considered “in the public domain”: no blogs required memberships to forums or passwords to access. The included blogs were the first blogs returned from the search that met our inclusion criteria.

When considering saturation (see Guest et al.³³), we decided ahead of the search that an initial set of 15 blogs would be selected, and then we would examine whether >5 new codes were generated for the 12th–15th bloggers. Were this to be the case, we would search for and select a further five blogs. As more than five new codes were generated in the analysis of these blogs, a further five bloggers were added (the next five blogs returned that met criteria). After coding the 17th–20th blogs, no new codes were generated, and we considered our saturation rule met.

Blogger characteristics

Table 1 summarizes the characteristics of the included bloggers, according to information disclosed in the blogs. All but one reported being formally diagnosed as autistic. One blog was a compilation of views from four women: we refer to them as Bloggers 16.1, 16.2, 16.3, and 16.4. This particular blog also included the views of an autistic person who was nonbinary: we decided as a research team not to code the sections of content from this person, as they did not meet our prespecified inclusion criteria. Of the bloggers who stated they had been diagnosed, all but two had been diagnosed in adulthood; several reported being diagnosed after their child was diagnosed as autistic. Most bloggers reported mental health problems, most commonly depression and anxiety. Although most bloggers did not describe their ethnicity in their own words, from images and information on the blogs we believe most were White.

Table 1.

Summary of Blogger Characteristics

ID	Diagnosis	Age range at time of diagnosis	Period of diagnosis	Year of blog entries included	Country of origin	Mental health problems disclosed in blogs	No. of blog posts (included)
1	AS	30–39	2010–2014	2015	United Kingdom	Suicidality, anxiety (undiagnosed)	7
2	ASD	30–39	2010–2014	2016–2020	United Kingdom	N/A	5
3	AS	20–29	2010–2014	2011–2013	United Kingdom	Depression	3
4	ASD	30–39	2010–2014	2016–2018	Australia	Depression, anxiety, ADHD	2
5	AS	50+	2010–2014	2012	United States	Depression, anxiety	1
6	SI	N/A	N/A (self-identifies)	2011–2012	United States	Depression	2
7	ASD	40–49	2015–2020	2016	United Kingdom	Anxiety	1
8	AS	30–39	2000–2004	2012	Canada	Depression, anxiety	1
9	PDD-NOS+ AS	5–11	1995–1999	2010–2011	United States	Anxiety	3
10	AS	0–4	1995–1999	2018	United States	N/A	1
11	Autism	50+	2010–2014	2014	United States	Depression, anxiety, other nonspecified	1
12	Autism	30–39	2010–2014	2017	United States	Eating disorder	1
13	Autism	30–39	2015–2020	2015–2016	United States	Depression	2
14	AS	30–39	2005–2009	2018	United States	N/A	2
15	Autism	40–49	2010–2014	2018–2019	United States	Depression, PTSD, DID	2
16.1	AS	20–29	2010–2014	2016	United States	Depression	1
16.2	Autism	Unspecified	Unspecified	2016	United Kingdom	Other nonspecified	1
16.3	Autism	Unspecified	Unspecified	2016	United States	Depression, anxiety	1
16.4	Autism	40–45	Unspecified	2016	United States	Other nonspecified	1
16.5	Autism	In childhood	Unspecified	2016	United States		1
17	ASD	Unspecified	2015–2020	2019	United States	Depression, anxiety, bipolar, ADHD	2
18	ASD	40–49	2015–2020	2020	United Kingdom	Other nonspecified	4
19	ASD	30–39	2010–2014	2019–2020	United States	N/A	3
20	Autism	40–49	Unspecified	2019	United States	Depression, anxiety	2

ADHD, attention deficit hyperactivity syndrome; AS, Asperger's syndrome; ASD, autism spectrum disorder; DID, dissociative identity disorder; PPD-NOS, pervasive disorder not otherwise specified; PTSD, post-traumatic stress disorder; SI, self-identifying.

Coding and analytic procedure

Our approach follows that outlined by Braun and Clarke³⁴ for reflexive thematic analysis. This approach is flexible with regard to epistemological approach: we took a largely semantic and critical realist approach. Critical realist approaches separate structures and mechanisms (the real) that generate events (the actual), which may then be experienced and perceived (the empirical).³⁵ This allows the experiences of individuals, and their reports, meanings, and reality to be fully recognized. Applying an inductive approach, we generated codes and themes from our data (though previous literature on camouflaging allowed us to readily detect this phenomenon). After initial coding, codes were reviewed by the author team, and blogs reread to ensure all relevant data had been coded. Codes were grouped and developed into themes, initially by creating a hierarchy to group similar or related codes. We reviewed and discussed candidate themes among the author team, with consideration given to counter-examples and accounts that challenged our candidate themes, before arriving at our final thematic structure. During our analysis, we sought to ensure that the themes developed reflected the views and experiences of all our bloggers, and that quotes represented a range of individuals.

Ethical considerations

The University of York's Psychology Department's ethics committee approved our project (IRB number: 19200). We applied the guidance of the British Psychological Society for Internet Mediated Research.³⁶ We did not contact the bloggers, as we took a nonintrusive approach: however, as already noted, we were careful to check that there was no indication that they considered their writing private (indeed, many explicitly stated they wanted to raise awareness about their experiences as an autistic woman). When considering the possible identification of the bloggers, we took a “moderate disguise” approach to the quotes included in the results,³⁷ meaning that we use pseudonyms (i.e., Blogger 10), and do not refer to the bloggers' specific sites, but the quotes are verbatim from the blogs.

Positionality of the researchers

All members of the author team identify as women. The author team included an autistic researcher who was key in the coding of the data and theme development. The author team included university academics who have supervised autistic students of all genders. One author conducted her thesis on the experiences of friendships of autistic women. The author team thus included lived experience of autism, experience supporting autistic students, and academic expertise in autistic people's social experiences.

Results

A central issue in the bloggers' experiences was acceptance, including being understood and feelings of belonging. We developed three themes: self-understanding and self-acceptance, being accepted and understood by others, and exhaustion. The bloggers struggled for self-acceptance and understanding of themselves, and wanted to be accepted by others, first as a person who functions in the neurotypical world, and later as a “truly” autistic person. Breakdowns in understanding and acceptance (either directed toward the self or from others) impacted their well-being, creating situations in which bloggers were vulnerable or mistreated. The tensions of trying to be accepted and understood led to exhaustion, an emotion that appears in all stages of the diagnostic journey, from before bloggers are aware of their autistic traits to after their formal diagnoses.

We further expand on our themes hereunder. Figure 1 visually represents our themes, and includes proposed links between our themes and subthemes. Text in bold in the sections hereunder highlight subthemes, for ease of linking with our figure. Supplementary Tables S1 and S2 contain additional quotes, organized into the ways in which acceptance and understanding promote well-being, whereas breakdowns in acceptance and understanding risk well-being.

FIG. 1.

Thematic map. Black boxes indicate the major themes of self-understanding and self-acceptance, being accepted and understood by others, and exhaustion. Gray boxes indicate subthemes that facilitated well-being. White ellipses indicate subthemes that threatened well-being and may contribute to exhaustion.

Self-understanding and self-acceptance

Diagnosis helped bloggers make sense of what happened to them. Written from a postdiagnostic/identification stage, the blogs are themselves a means for the bloggers to articulate their self-understanding, in light of getting an autism diagnosis. Throughout the blogs, women's diagnoses had a powerful explanatory role, and was used to make sense of their previous difficulties. Diagnosis helped the bloggers understand their problems and be kinder to themselves, freeing them from believing they were dysfunctional and reducing feelings of inadequacy. Their new diagnoses allowed the bloggers to seek appropriate services that positively impacted their well-being.

The relief and empowerment I felt when I was diagnosed and finally discovered what “was wrong with me” were overwhelming…It literally gave me a second life. [Blogger 5]

However, many also experienced feelings of regret, particularly wishing that they had known sooner, as not knowing had led to self-esteem/identity problems. One recurrent symbolic reflection of this was that many of the bloggers wrote a letter to their younger self. These letters to their childhood selves also appeared to be an interesting representation of “making sense” of what happened to them, an exercise in self-understanding.

While for many, diagnosis brought increased self-understanding and acceptance, this was not universal. For some, feelings that they did not fit the autism diagnosis led to issues with imposter syndrome. Indeed, one blogger felt her specific diagnosis did not represent her, feeling that textbook descriptions of autism did not fit with her experiences. For other bloggers, ongoing problems with self-acceptance were partly fuelled by the lack of acceptance from others and feeling like a fraud.

When I finally told the people around me about my diagnosis, the range of responses ran from skepticism to “Oh, I suspected it years ago.”... part of me is still sure that one day someone will point at me and say “faker!” [Blogger 4]

Being accepted and understood by others

When reflecting on their childhoods, bloggers reported difficulties with friendships, being bullied or ostracized, and being taken advantage of. It was clear that striving to fit in had been painful and exhausting, and not knowing about their autism had left them vulnerable. Feelings of anxiety and disorientation arose due to feeling like others were experiencing a different reality to them: their undiagnosed autism left them with no framework for understanding why others experienced the world differently.

Being an undiagnosed autistic can feel like the whole world is gaslighting you. From being told not to be silly, the lights aren't hurting you... you're being told every day that your lived experience isn't real. There have certainly been times that I have doubted my sanity. [Blogger 2]

Lack of professional knowledge and misdiagnosis had negative consequences. Some bloggers were misdiagnosed with other mental health conditions. With a nonautism diagnosis, their difficulties were interpreted according to these incorrect labels. The bloggers reflected on their experiences of unsuitable therapies; for some, these treatments left them with even worse mental health.

Misdiagnosis left me vulnerable to the protocols and biases and stigma of, in my case, manic depression/bipolar... I felt tied to the diagnosis I had and even though my heart knew it wasn't right, my rigid thinking made me cling to it for far too long. [Blogger 16.4]

Although I was in therapy for PTSD and Dissociative Identity Disorder, I became discouraged. No matter how hard I struggled to “normalize” my emotional regulation, something always felt “off” inside. [Blogger 15]

Diagnosis improved relationships with others and fostered connections with communities, reducing feelings of being an outsider. For some, not only did diagnosis bring a sense of belonging within the autism community, but also a sense of purpose and belonging within the neurotypical world, for example, by improving communication within relationships and at work.

Today I can say that our household and family is stronger than ever. My husband and I have a wonderful marriage because of—not in spite of—our differences. Learning to communicate in a neurotypical-neurodivergent relationship has led to a happier household and a greater appreciation for human diversity [Blogger 17]

However, feelings of belonging postdiagnosis did not go unthreatened. Indeed, fears around being accepted as truly autistic impacted bloggers seeking a diagnosis at all. Bloggers were concerned that the diagnostic criteria only identify a person as autistic if they are male, have academic impairments, or are a child. This deterred some women from seeking assessment.

My years of masking, coupled with an apparent high level of ‘functioning’, and an inability to ask for help, meant that persuading my GP to refer me was too anxiety provoking. … I had heard stories of women being refused referral due to eye contact with the GP…[Blogger 7]

Even after a diagnosis, the bloggers faced stereotypes about autism, including other people questioning their diagnosis, and assumptions about their characteristics and abilities: one blogger was met with surprise that she could drive, and that she was a Christian. The challenge of the “rightness” of their diagnosis was unsettling for some bloggers, and was experienced as a rejection from a community they expected to be accepted by. Being faced with these stereotypes and lack of acceptance as “truly” autistic led to problems with self-acceptance: the feelings of “not belonging” turned inward, creating imposter syndrome.

I feel like they are saying I'm fundamentally different from a LOT of other people with autism, the REALLY REAL PEOPLE WITH AUTISM, probably. I feel like I'm being kicked out of my own disability. [Blogger 9]

Exhaustion

Struggles with well-being were present throughout the blogs, and were linked to the breakdown of self-acceptance and acceptance from others. Camouflaging and striving to fit in were exhausting, and a trigger for mental health problems for several of the bloggers.

My chameleon skills were a double-edged sword: I could appear fairly “normal” for stretches of time, but they also drained me completely... I became so many different people that I felt I'd lost any sense of my own identity. [Blogger 4]

For some, breaking points lead to identification; when bloggers broke down from the continued strain of trying to cope, these moments were catalysts for finally recognizing that they were autistic. However, the diagnostic process itself was also anxiety provoking, and as noted above fears delayed some from seeking a diagnosis, and women faced a lack of professional knowledge about their autism. After years of camouflaging, showing the “real person” to a clinician (to obtain a diagnosis) required conscious vulnerability on the part of bloggers.

When you have worked so hard to hold yourself together for so long, it is not easy to submit yourself to a process. We often worry that assessors are trying to trick us, to catch us out [Blogger 7]

Even postdiagnosis, the bloggers reported having to explain themselves repeatedly, due to not fitting autism stereotypes, which disrupted the process of self-acceptance (noted above). This created a space in which autistic women felt they did not belong anywhere—they were neither neurotypical women, nor “properly” autistic.

It felt exhausting to explain over and over again what me being autistic really meant, how it affected me, why I was different to the stereotypes but that didn't mean I was less autistic [Blogger 2]

Discussion

We sought to understand further the experiences of autistic women, and the interplay of their diagnostic journeys with their mental well-being. Our results centered around acceptance, specifically self-acceptance, acceptance from others, and exhaustion from breakdowns in acceptance. The lack of timely recognition as autistic contributed to the mental distress experienced by many of the bloggers. The diagnostic process itself also posed threats to blogger's well-being, and although a formal diagnosis brought relief for many, autistic women still faced stereotypes and continued to feel that others required them to justify their diagnoses. Although there are certainly benefits to being diagnosed, there are unfortunate parallels between the lack of acceptance and understanding earlier in life due to not being neurotypical, and a continued lack of acceptance and understanding later in life, due to being autistic and a woman.

Our findings complement previous studies on the experiences of autistic women, in that this population reports high levels of exhaustion, and that attempting to camouflage their difficulties contributes to emotional difficulties and mental fatigue.^15,16 The accounts of the bloggers also resonate with the review written by Zener,³⁸ which states that a diagnosis brings mixed feelings of relief and validation, but also grief when women look back on missed opportunities. Also in agreement with our analysis, they argue that diagnosis can lead to new self-understanding and a sense of belonging, and a chance to develop self-acceptance, as mentioned in Tan's concept of “biographical illumination.”¹¹ Indeed, previous findings from autistic adults note the relationship between personal acceptance, acceptance from society, family, and friends, and individuals' stress and depression, in that greater acceptance leads to reductions in stress and depression.³⁹ Our own interpretation is that the extent of the positive aspects of diagnosis on women's well-being depends on the level of personal acceptance and acceptance by others. Furthermore, in their description of autistic burnout, Raymaker et al.⁴⁰ state that “chronic exhaustion” is a feature; “exhaustion” was also our word of choice for capturing the difficulties experienced by the bloggers. Under potential solutions and strategies for avoiding or mitigating burnout, Raymaker et al.⁴⁰ list “Self-knowledge” and “Acceptance and social support,” which complements our findings. The study by Raymaker et al.⁴⁰ includes people of all genders: highlighting that experiences of exhaustion are unlikely to be specific to autistic women.

Our current analysis adds to these previous explorations by highlighting the important role that acceptance has in autistic women's well-being, even after formal diagnosis. We have documented the ways in which this acceptance is threatened, including by continued facing of autism stereotypes, and how this disrupts the positive feelings of being understood and belonging. Our findings align with those of the Huang et al.⁹ scoping review regarding adult experiences of autism diagnosis, further emphasizing the importance of recognizing and countering the stereotypes autistic adults face. Indeed, Botha et al.⁴¹ argue that it is the stigma of others toward autistic people that is problematic, rather than being autistic itself.

Our study adds to a body of evidence that education about the female (or internalizing) presentation of autism is needed not only for professionals who work with children and young people. In agreement with Zener,³⁸ we would emphasize the need for training and education in adult mental health services. Professionals involved in the diagnosis of autistic women should be mindful that the process may be emotionally stressful. Years of being undiagnosed may have led to camouflaging difficulties: the diagnostic process requires these strategies to be given up or revealed, leaving women feeling vulnerable. Some women may not even be conscious of their camouflaging behaviors.⁴² Diagnostic models in psychiatry are currently deficit based: people are expected to show impairments to meet the criteria.⁴³ This framework is at odds with the neurodiversity model, which argues that “disordering” autism can be harmful to an individual's self-esteem, and argues for an approach that celebrates autism's differences and unique strengths.⁴⁴ Although there has been some consideration of what the neurodiversity movement might mean for psychiatry,⁴⁵ it seems unlikely there will be widespread change soon, considering that autistic and other neurodivergent people continue to face challenges with recognition of their unique needs and experiences within health care systems.⁴⁶ Thus, we suggest that when women seek diagnoses, being aware that the presentation of a woman's autism may be filtered through a highly developed mask is crucial for women to feel that their underlying problems are not being minimized.

Challenging stereotypes associated with autism is also important: as illustrated by the bloggers, autistic women have many skills and successes that others may assume an autistic person would not. Being met with surprise or skepticism about your life is upsetting. Practically, our results have implications for postdiagnostic support for autistic women. Specifically, we suggest such support actively considers the impact of consistently being told they do not “seem autistic,” and how this may feed into feelings of imposter syndrome, and affect women's self-understanding and self-acceptance. Creating resources or forums for women to unpack these experiences could help to overcome the negative impacts of these experiences.

This is one of few studies to use a blog-based approach to explore the experiences and views of autistic people. Overall, we would recommend such an approach to other autism researchers, but this design does bring with it some important limitations. First, the data are retrospective. Some bloggers were reflecting on experiences from many years ago. Although the research questions of our project centered around the views of the women themselves, and what was salient and important to them, it is possible their views may be different immediately post/before diagnosis (most of our bloggers wrote about 5 years later). Future studies might consider a longitudinal design, following women through their diagnostic experience and beyond.

One strength of the blog approach is that data are naturalistic and reflect what is important enough to the women themselves for them to decide to write about. However, we noted for some bloggers, almost all their experiences appeared to them to be explained by their being autistic. This highlights the centrality of the autism diagnosis to these women's self-understanding, but it could be that other important factors about their lives are not captured. Research projects working with blog data can only use what is written about: future researchers should consider the importance of veracity and the impact of potential omissions.

A further important limitation is who is likely to be represented in these blogs. We are missing the perspectives of older adults and adolescents. We did not note whether the women who wrote these blogs disclosed any diagnoses of intellectual disability. However, by adopting an approach in which we study the blogs written by autistic people, we should be mindful that this approach will likely lead to a biased sample that does not represent the whole of the autistic population. Autistic women with intellectual disabilities may be less likely to write a blog, meaning their experiences would not be represented.

Although our search criteria would have allowed for the inclusion of transgender women, we do not believe any of our bloggers were transgender. Nonbinary individuals were also not considered here. We posit that the issues of acceptance may be just as important if not more so in the experiences of nonbinary and transgender autistic individuals. Indeed, a recent study by Hillier et al.⁴⁷ suggested that LGBTQ+ autistic individuals faced multiple minority stressors. Their participants described others' lack of knowledge about autism and nonheterosexual orientations and nonbinary gender identities. They also described experiences of rejection from the LGBTQ+ community due to their autistic traits, and from the autism community due to their sexual or gender identity. This double rejection has parallels to the experiences of the women in our own article, where they faced rejection from the autism community due to not fitting a stereotypical portrait of autism. Together both our own and Hillier et al.'s research highlight the need for more research into experiences of rejection from the autism community.

It is important to note that diagnosis in adulthood is not exclusive to women, and it is possible some themes and issues identified here also apply to men's experiences. Some insight can be gained from the study of Lewis⁴⁸: these researchers investigated reported barriers to getting an autism diagnosis as an adult. They report that women show higher agreement for barriers such as “Concerns I will not be believed.” This suggests that at least some issues are reported more frequently (if not exclusively) by women. However, although we center our recommendations on services and supports for women (given that our data came from women's experiences), we would encourage clinicians and practitioners to be wary of falling into patterns of thinking that these are issues exclusive to women and cannot also be seen in autistic people of other genders.

Conclusion

To conclude, our analysis of blogs written by autistic women highlights the role of acceptance in their well-being, as they progress through from not recognizing or understanding their autism to identification and in some cases to formal diagnosis. The potential positives for women's well-being of a formal diagnosis may be reduced by the expected or actual challenges required to get that diagnosis, and the lack of acceptance as autistic even after receiving a clinical diagnosis. Our project is also proof-of-concept for using blog-based approaches for researching the experiences of autistic individuals.

Authorship Confirmation Statement

We confirm we are the sole authors of this article.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

M.H. is supported by a Laidlaw Scholarship at the University of York.

Supplementary Material

Supplementary Data S1

Supplementary Table S1

Supplementary Table S2