Copyright is owned by the Author of the research report. Permission is given for a copy to be downloaded by an individual for the purpose of research and private study only. The research report may not be reproduced elsewhere without the permission of the Author. Neurodivergence and Marginalised Gender - a thematic analysis of womens’ and gender-diverse peoples’ experiences of ASD and ADHD. A research report presented in partial fulfilment of the requirements for the degree of Bachelor of Arts (Honours) In Psychology at Massey University, Manawatū New Zealand. Jessica May Goodman 2023 Table of Contents 1 ABSTRACT ................................................................................................................................. 1 2 GLOSSARY OF TERMS ................................................................................................................ 2 3 INTRODUCTION ........................................................................................................................ 4 3.1 THE NEURODIVERSITY PARADIGM AND THE SOCIAL MODEL OF DISABILITY ............................................. 6 3.2 THE MEDICAL MODEL OF DISABILITY .............................................................................................. 7 3.3 STATISTICS IN AOTEAROA NEW ZEALAND ........................................................................................ 7 3.4 MEDIA .................................................................................................................................... 8 3.5 GENDER ................................................................................................................................... 8 3.6 RESEARCH RATIONALE AND AIM: ................................................................................................... 9 4 LITERATURE REVIEW ............................................................................................................... 10 4.1 MARGINALISED GENDER AND AUTISM SPECTRUM DISORDER ............................................................ 10 4.2 MARGINALISED GENDER AND ATTENTION DEFICIT HYPERACTIVITY DISORDER ....................................... 12 4.3 VALUE OF QUALITATIVE LIVED-EXPERIENCE RESEARCH ON ADHD AND ASD ......................................... 14 4.4 MEDIA COVERAGE OF NEURODIVERGENCE ..................................................................................... 14 5 METHODS ............................................................................................................................... 16 5.1 EPISTEMOLOGY, ONTOLOGY, AND THEORETICAL FRAMEWORK. ........................................................... 16 5.2 AIMS ..................................................................................................................................... 17 5.3 DATA COLLECTION ................................................................................................................... 18 5.4 REFLEXIVITY ............................................................................................................................ 20 5.5 ETHICS ................................................................................................................................... 20 5.6 DATA ANALYSIS ....................................................................................................................... 20 5.7 LOOKING BETWEEN THE DATA ..................................................................................................... 22 6 FINDINGS ................................................................................................................................ 25 6.1 GENDERED DIFFERENCES – EXPERIENCES OF NEURODIVERGENT WOMEN AND GENDER-DIVERSE PEOPLE. ..... 26 6.1.1 LACK OF AWARENESS .................................................................................................................... 26 6.1.2 GENDER BIAS IN DIAGNOSTIC CRITERIA ............................................................................................. 26 6.1.3 GENDERED DIFFERENCES IN SYMPTOMS ........................................................................................... 29 6.1.4 NDMG EXPERIENCE OF THE WORLD IS DIFFERENT .............................................................................. 30 6.1.5 GENDER AND SEXUAL DIVERSITY ...................................................................................................... 31 6.2 EDUCATION AND AWARENESS .................................................................................................... 33 6.3 INTERSECTIONAL INEQUITY – BARRIERS TO ACCESS .......................................................................... 34 6.3.1 INACCESSIBLE DIAGNOSIS ............................................................................................................... 34 6.3.2 INACCESSIBLE SUPPORT AND TREATMENT ......................................................................................... 35 6.3.3 IMPORTANCE OF DIAGNOSIS ........................................................................................................... 35 6.4 NEURODIVERGENT IDENTITY ....................................................................................................... 36 6.4.1 A SENSE OF COMMUNITY ............................................................................................................... 36 6.4.2 NEURODIVERGENT SELF-IDENTITY .................................................................................................... 37 7 DISCUSSION ............................................................................................................................ 39 7.1 LIMITATIONS AND FUTURE RESEARCH ........................................................................................... 42 8 CONCLUSION .......................................................................................................................... 43 9 REFERENCES ............................................................................................................................ 44 10 APPENDIX A ............................................................................................................................ 57 11 APPENDIX B ............................................................................................................................ 59 12 APPENDIX C ............................................................................................................................ 62 13 APPENDIX D ............................................................................................................................ 64 14 APPENDIX E ............................................................................................................................ 67 List of Figures and Tables Figure 1: Interest over time, worldwide, for the term ‘neurodiversity’ ................................... 4 Figure 2: Interest over time, worldwide, for the term ‘neurodivergent’ ................................. 5 Figure 3: Data Selection Process ............................................................................................ 19 Figure 4: International vs. New Zealand – Theme Differentiation ......................................... 23 Figure 5: First vs. Third-Person Accounts – Theme Differentiation ....................................... 24 Table 1: My journey through Braun & Clarke’s (2006) phases of thematic analysis .............. 21 Table 2: Main Themes ............................................................................................................ 25 Table 3: Neurodivergent Vocabulary ..................................................................................... 28 1 1 Abstract It is widely known that women are diagnosed with ADHD and ASD at much lower rates than men – however, this may not be due to actual differences in prevalence rates. One suggested way of tackling this issue, is by looking at neurodevelopmental disorders through a neurodiversity lens, rather than simply a bio-medical lens, and normalising self- identification and more collaborative, bottom-up approaches to creating clinical knowledge and diagnostic criteria. Neurodiversity is a fairly new and rapidly developing concept, and there are wide-ranging interpretations of what it exactly refers to. The aim of this research project was to conduct a thematic media analysis of mainstream online media content (blogs and news articles) created by or about people of marginalised genders (women and gender-diverse people) with ADHD and/or ASD and looking at their perspectives and experiences of neurodivergence. This project takes a Social Constructionist approach and is aligned with the values of Neurodiversity Paradigm and the Social Model of Disability. The findings of the project included the following themes: ‘Gendered Differences – Experiences of Neurodivergent Women and Gender-Diverse People’; ‘Education and Awareness’; ‘Intersectional Inequity’; and ‘Neurodivergent Identity’. There is significant value to this online media content: gives a sense of community, helps increase awareness and decrease stigma, gives lived experiences a platform. The implications of this research are that it becomes clear the value of Walker’s (2021) Neurodiversity Paradigm and the value of the ‘neurodivergent’ self-identity label for many NDMG. Until DSM criteria of ADHD and ASD better reflect the experiences of ADHD and ASD women and gender-diverse people, and until society treats such people more equitably and kindly, it is unsurprising that these people are seeking out their own strengths-based identity. 2 2 Glossary of terms Terms and Definitions according to the Neurodiversity Paradigm from Dr Nick Walker’s (2021) ‘Neuroqueer’ work, “Neurodiversity: Some Basic Terms and Definitions’. Neurodiverse: Describes the presence of neurological variation in a group of people. Humanity is as racially, ethnically, and culturally varied as it is neurologically varied, or, ‘neurodiverse’ (Walker, 2014). Neurodiversity: The spectrum of neurological variation present across all humans. Every human is a part of the human ‘neurodiversity’ spectrum, just as every human is a part of the human racial, ethnic, and cultural diversity spectrum (Walker, 2014). Neurodivergence: A deviation in neurological functioning from normative societal standards. ‘Neuro’ (neurological) + ‘divergence’ (deviation) (Disabled World, 2022). E.g., Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD) are forms of ‘neurodivergence’. Neurodivergent: Describes an individual whose mind operates in ways that are markedly different from normative societal standards. In contrast to the term ‘neurodiversity’ which is inclusive of all neurological diversity in the human species, ‘neurodivergent’ refers specifically to an individual whose neurological functioning deviates from societal norms (Walker, 2014). Previously, neurodivergent individuals were sometimes referred to as "neurodiverse individuals", but this is outdated and inaccurate (Disabled World, 2022). E.g., An individual with Autism Spectrum Disorder (ASD) or Attention Deficit Hyperactivity Disorder (ADHD) is ‘neurodivergent’. Neurotypical: A term used to describe an individual whose mind operates in ways that align with normative societal standards. Being neurotypical means being "neurologically typical" - that is, being within the ‘normal’ (average) range for human neurology (Walker, 2014). The word neurotypical can be used as an adjective ("He's 3 neurotypical") or as a noun ("He's a neurotypical") (Walker, 2014). Neurotypicality is the state of being from which neurodivergent individuals differ. 4 3 Introduction The aim of the research was to explore how neurodiversity was being discussed in online blogs and news articles by and about neurodivergent (ND) individuals of marginalized genders. I conducted a thematic media analysis of stories and experiences of formally diagnosed or self-diagnosed Autism Spectrum Disorder (ASD) and/or Attention Deficit Hyperactivity Disorder (ADHD), and ‘Neurodivergent’ self-identity, posted online by those of marginalized genders (female and gender-diverse people). If you google ‘neurodiversity’ there are over 8 million results, including articles from many reputable sources such as WebMD, Healthline, Harvard Medical School, University of Auckland, explaining what neurodiversity is, how neurodivergence affects people, and other topics such as how to be more inclusive and accommodating towards neurodivergent people in the workplace (Harvard Medical School, 2021; University of Auckland, n.d.; WebMD, 2021). Looking at Google Trends data over the past ten years, we can see the ‘interest over time’ for terms such as ‘Neurodivergent’ and ‘Neurodiversity’ in the year 2012 versus. the year 2022. (See Figure 1 & 2). Figure 1: Interest over time, worldwide, for the term ‘neurodiversity’ Interest over time, worldwide, for the term ‘neurodiversity’grew from four per cent 01 January 2012 to 98 per cent at 01 January 2022, with interest over time peaking at 100 per cent in March 2021 (Google Trends, 2022b). ‘[Interest over time’ is a term used by Google Trends, where “Numbers represent search interest relative to the highest point on the chart for the given region and time. A value of 100 is the peak popularity for the term. A value of 50 means that the term is half as popular. A score of 0 means that there was not enough data for this term.” (Google Trends, 2022)]. 5 Figure 2: Interest over time, worldwide, for the term ‘neurodivergent’ Interest over time, worldwide, for the term ‘Neurodivergent’ grew from zero per cent 01 January 2012 to 88 per cent at 01 January 2022, with interest over time peaking at 100 per cent in November 2021 (Google Trends, 2022a). The term ‘Neurodiversity’ has been given many definitions, but was originally coined by Judy Singer, an Australian autistic sociologist, in the late 1990s, to represent disorders such as Attention Deficit Hyperactivity Disorder (ADHD), Autism (now Autism Spectrum Disorder; ASD), and Dyslexia. The goal was to move the focus of conversation about the diverse range of methods of thinking and learning away from the typical litany of deficiencies, pathologies, and disabilities. This term was intended to advocate equality and inclusion of ‘neurological minorities’ (Disabled World, 2022; WebMD, 2021), and promotes the idea that certain neurological disorders can actually be understood as normal variations in the human brain associated with specific strengths - there is no one ‘correct’ way of thinking, learning, or acting, and differences are not seen as weaknesses (Harvard Medical School, 2021). While at its core a social justice movement, neurodiversity research and education are becoming increasingly crucial in how clinicians approach and treat neurological conditions or disabilities (Disabled World, 2022; Harvard Medical School, 2021; WebMD, 2021). There has been some misunderstanding about the term ‘neurodiversity’ and other related terms. The usage of ‘neurodivergent’ or ‘neurodivergence’ is fairly broad and varies across different forms of media typically would include diagnosed ASD and ADHD. Some consider 6 neurodivergence to also include learning disabilities such as dyslexia, dyspraxia, dysgraphia and neurological disorders such as Tourette’s syndrome (Umbrella, 2021; Walker, 2014). Neurodiversity, in contrast refers specifically to the neurological diversity of all people (Harvard Medical School, 2021). For the sake of clarity, the terms used in this article are as defined by queer autistic scholar Nick Walker’s (2014) definitions. I have chosen Walker’s (2014) definitions as most suitable for this research because: a) Walker’s work is the most comprehensive guide to definitions I have come across, and b) is sensitive to intersectionality (including race, gender, sexuality, and disability) (see glossary). The focus of this research will be on ADHD and ASD. 3.1 The Neurodiversity Paradigm and the Social Model of Disability The Neurodiversity Paradigm is a particular viewpoint on neurodiversity that promotes the idea that variations in neurological development and functioning among individuals are a normal and valuable component of human diversity - the outcome of normal differences in the human genome - and so should not necessarily be viewed as a deficit (Leadbitter et al., 2021). To put it simply, to remove a neurological disorder such as autism is to remove the person, because it is a part of who they are. The Neurodiversity Paradigm aligns with the values of the Social Model of Disability, which supports the idea that societal barriers are what disables people, not the individual’s physical or medical disability (Walker, 2014). Therefore, proponents of the neurodiversity paradigm reject the notion that neurodivergence should be treated or cured, instead favouring fostering support systems that enable neurodivergent individuals to freely exist as their neurodivergent selves, and celebrate neurodivergent modes of expression and communication (Disabled World, 2022).This challenges prevalent views of neurological diversity as inherently pathological, instead asserting that neurological differences should be recognised and respected as a social category on par with gender, ethnicity, sexual orientation, or disability status (Disabled World, 2022). In academic literature, ‘normal behaviour’ has been understood simply as the most common behaviour in a culture, however, this description may cause us to overvalue familiar behaviours and undervalue those we do not understand (Redshaw & McCormack, 7 2022). ‘Normal behaviour’ follows social norms, and consequently, non-traditional behaviours is often considered to be disordered or ‘deficit’ (Griffiths, 2017; Redshaw & McCormack, 2022). An alternative understanding of variations in behaviour and thinking that has become popularised, views such differences as "neural diversity" (or, “neurodiversity”) (Griffiths, 2017; Redshaw & McCormack, 2022, p.21) – a natural and valuable phenomenon. This alternative understanding helps to reduce stigma, boost self- esteem, and encourage those who fall within the range of neurological ‘norms’ to adapt to the existence of diverse populations, rather than change the behaviours of people who are different. 3.2 The Medical Model of Disability While the Neurodiversity Paradigm aligns with the values of the Social Model of Disability, this is not to say there is not value in the Medical Model of Disability. Many neurodivergent people find clinical diagnostic criteria helpful and validating for their identity and sense of self-worth, and also benefit from the access to support and medication that diagnosis allows (Seers & Hogg, 2023) (To see DSM-5-TR diagnostic criteria for ASD, see Appendix A. To see DSM-5-TR diagnostic criteria for ADHD, see Appendix B). It is important to note that the Medical Model of Disability is not without flaws. Historically biased research methods limit understandings of these conditions for certain demographics and contribute to difficulties for some in receiving a diagnosis (Criado-Perez, 2019; Dusenbery, 2018) - most notably for females or gender-diverse people with ASD or ADHD who might present quite differently to the stereotypical criteria for these conditions. 3.3 Statistics in Aotearoa New Zealand The statistics for neurodivergence in New Zealand are difficult to come by. For Autism Spectrum Disorder, a variety of sources estimate that approximately 1 in 100 New Zealanders are autistic (Altogether Autism, 2022; Autism NZ, 2022; Whaikaha, n.d.; Neurological Foundation, 2019). Ultimately, however, there is no definitive answer on the number of New Zealanders with ASD, as New Zealand does not collect this data, and estimates are based on international data (Altogether Autism, 2022; Autism NZ, 2022; 8 Maenner et al., 2020). There have been some attempts to collect this data in New Zealand, but they have been very limited and likely significantly under-estimate true prevalence rates (Altogether Autism, 2022). ADHD statistics suggest approximately 1 in 20 people have ADHD (ADHD NZ, 2022), or 5% of our population. There is no reliable population data available on specific demographics breakdown of ASD or ADHD prevalence rates (e.g., gender, adult diagnosis). However, it is known that autism is diagnosed at a rate five times higher in boys than girls and diagnosis most commonly occurs between ages five and 14 (Neurological Foundation, n.d.). 3.4 Media Media has the strong potential to play a role in breaking down misconceptions surrounding neurodivergence, but historically the media has reinforced stereotypical understandings (Lewin & Akhtar, 2021; Yücel, 2023). This has the potential to shape public viewpoints and can lead to stigmatization (Dean, 2022). The rise of social media has increased the visibility of neurodivergence (McDermott, 2022; Siberry, 2023; Wickramasinghe, 2023) but this is not the focus of this research. The focus is on mainstream online media (blogs and news articles) as this has a mixture of articles from professionals and stories about lived experience. This choice of media types was important as traditional media can reflect common representations, highlight issues that are of significance to the public, reach audiences that might not have experience with ND, and provide both first- and third-person accounts (Dean, 2022). In addition to this, online blog posts and news articles are typically longer-form content in comparison to social media posts (e.g. Twitter, TikTok), which allows for more in-depth stories. 3.5 Gender An increasing amount of research points to gendered differences in ND from diagnosis rates, presentation types and lived experiences (Calderoni, 2023; Tubío-Fungueiriño et al., 2021). Clinicians and researchers have long been troubled by the gender disparity in mental health service access and research (Ohan & Visser, 2009). Across all developmental stages, females had greater unmet service needs than males in three nationally representative surveys on 9 adolescent mental health (Ohan & Visser, 2009). The gender differences are discussed further in the literature review. 3.6 Research rationale and aim: The rational for this research is that there are significant gaps in the academic literature around experiences of ASD and ADHD from women and gender-diverse people, especially in the Aotearoa New Zealand context. There is limited exploration in the academic literature around the complexities of the neurodivergent self-identity, how people with ASD and ADHD use this terminology, and what value these labels provide and how this is framed in the media. This research project aims to do a media analysis of blogs and news articles that focus on neurodiversity and marginalized gender (see aims in Method for more detail). 10 4 Literature Review 4.1 Marginalised Gender and Autism Spectrum Disorder Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder defined by difficulty with reciprocal social connections, as well as restricted patterns of behaviour and interests (Marí- Bauset et al., 2014). There are significant gaps in the academic literature about ASD in gender-diverse individuals, so the following information focuses on ASD in females. Estimates of the male-to-female ratio for ASD are varied, including ranges between 4:1 and 9:1 (Begeer et al, 2013; CDC, 2012; Fombonne 2003; Tubío-Fungueiriño et al., 2021), but there is a significant male predominance (Calderoni, 2023; Posserud et al., 2021). This has caused a double-edged sword where fewer females are diagnosed with ASD, so there is less ASD research focused on females (Hartley & Sikora, 2009), and consequently, even fewer females are diagnosed with ASD as we have more limited understandings of how ASD presents in females. This is hypothesised to be a major factor behind the higher prevalence of ASD among males. Research has produced contradictory results regarding the differences in ASD symptoms between males and females. Some researchers have found that there are minimal or no sex differences in the presentation of ASD (Chen et al., 2022; Harris et al., 2022). On the other hand, many researchers have found that there are sex differences in presentation of ASD. Some researchers found that females with ASD actually had more ‘appropriate’ interests than males (Dell’Osso & Carpita, 2023; Kopp & Gillberg 1992; Wolff & McGuire 1995) – for example, ASD females would hyper-focus on certain kinds of special interests that were considered ‘normal’ for girls, such as celebrities or fashion (Dell’Osso & Carpita, 2023). Some early research found that males with ASD exhibited more socially 'unacceptable' motor movements and abnormal body and object use than females (Lord et al. 1982; Tsi et al. 1981; Volkmar et al., 1988). When controlling for IQ, Lord et al. (1982) and McLennan et al. (1993) found higher rates of restricted or repetitive behaviours and inappropriate play in boys with ASD compared to girls with ASD. In addition, during early childhood, males exhibited greater deficits in reciprocal social interaction and communication compared to 11 girls (McLennan et al., 1993). However, some more recent research suggests that the core diagnostic characteristics of ASD actually do not vary by sex but societal gendered expectations differ, for example, girls may be expected to be quieter than boys (Hartley & Sikora 2009; Horovitz et al. 2011; Mayes & Calhoun 2011; Rivet & Matson 2011), or girls may learn to camouflage their symptoms more effectively (Dell’Osso & Carpita, 2023; Tubío- Fungueiriño et al., 2021). Females with ASD exhibit less socioemotional reciprocity problems and are generally more sociable, camouflaging symptoms during social connections, as they may be more conscious of their difficulties socialising and the need for social integration (Dell’Osso & Carpita, 2023). However, chronic camouflaging (forcing people to perform in social situations) may increase social anxiety, sadness, and despair, (Dell’Osso & Carpita, 2023). It has also been hypothesised that the reason behind the higher prevalence of ASD being diagnosed among males, is due to females often only being diagnosed with ASD when there are cognitive impairments present - which is an explaining factor of why some researchers previously thought that females with ASD have poorer social, communicative, and cognitive functioning than males with ASD (Banach et al. 2009; Crick & Zahn-Waxler 2003; Carter et al. 2007; McLennan et al. 1993). Begeer et al. (2013) examined discrepancies in delays of identification and diagnosis of ASD among children and adults– specifically that females with ASD were consistently identified and diagnosed later than their male counterparts. A contributing factor may be parents old higher expectations for girls to exhibit socially desirable behaviour and exert greater pressure on them to conform to societal norms compared to boys and parental bias in interpretation may conceal symptoms of ASD in girls. Moreover, it is plausible that the delayed diagnosis of ASD in females may be attributed to a later onset of symptoms rather than a failure to identify the condition in girls (Begeer et al., 2013).. The process of identifying ASD in females is complex due to numerous factors that can result in delayed or missed diagnoses. Combined with the contradictory findings indicating that historical (and contemporary) understandings of gendered differences related to ASD are not necessarily accurate, suggest more research is needed to understand the implications of diagnostic criteria and validating of diagnostic tools. The consequences of 12 delayed and missed diagnosis has serious implications for the physical and mental well- being of females with ASD. In comparison to the paediatric population at large, children diagnosed with ASD exhibit elevated rates of comorbid medical and psychiatric conditions (Croen et al., 2015). “Adults with autism had significantly increased rates of all major psychiatric disorders including depression, anxiety, bipolar disorder, obsessive-compulsive disorder, schizophrenia, and suicide attempts. Nearly all medical conditions were significantly more common in adults with autism, including immune conditions, gastrointestinal and sleep disorders, seizure, obesity, dyslipidemia, hypertension, and diabetes. Rarer conditions, such as stroke and Parkinson's disease, were also significantly more common among adults with autism.” - Croen et al. (2015, p.814) 4.2 Marginalised Gender and Attention Deficit Hyperactivity Disorder Attention Deficit Hyperactivity Disorder (ADHD) is a neurodevelopmental disorder characterised by an ongoing and consistent tendency towards inattention and/or hyperactivity-impulsivity that hinders an individual's functioning (Redshaw & McCormack, 2022). The three subtypes of ADHD that have been identified are predominantly inattentive, predominantly hyperactive/impulsive, and combined type (Redshaw & McCormack, 2022). Females diagnosed with ADHD tend to receive an inattentive subtype diagnosis more frequently than males with ADHD (Rucklidge, 2008; Rucklidge, 2010). ADHD is a multifaceted condition that has the potential to significantly impact every aspect of an individual's life, throughout their entire lifespan (Tarver et al., 2014). The prevalence of ADHD among adult women of all ages has increased, resulting in a 31.1% decrease in the gender gap in ADHD prevalence among adults from 2007 to 2012 (London & Landes, 2021), though there is a lack of reliable population data on ADHD in more recent years. Recent clinical research have demonstrated a high level of heterogeneity in presentation of ADHD in children, adolescents and adults (Carucci et al., 2023). ADHD is associated with substantial impairment across areas of functioning including neuropsychological 13 functioning, social and peer functioning, academic attainment, and emotional and cognitive functioning (Tarver et al., 2014). Redshaw and McCormack (2022) researched the experience of “being ADHD”, providing lived-experience perspectives and further insight into these functional impairments. Specific functional challenges associated with ADHD (see Appendix C) include temporal myopia/time-blindness, inattention/distractibility, executive dysfunction, delay aversion/temporal processing deficits, emotional dysfunction/dysregulation, impaired social performance, academic under-achievement, and motor co-ordination deficits (Redshaw & McCormack, 2022; Tarver, et al., 2014). ADHD is frequently present alongside a range of co-morbidities, including disruptive behaviour disorders, mood and anxiety disorders, tic disorders, substance misuse, motor co-ordination (Tarver, et al., 2014). Research has found sex variations in the neuropsychological and clinical presentation of ADHD from structural and functional imaging (Carucci et al., 2023). There is some evidence that females with ADHD may have decreased visual-spatial thinking, language abilities, and working memory (Carucci et al., 2023). Dupuy et al. (2021) examined sex differences in the EEG activity of adults diagnosed with Attention-Deficit/Hyperactivity Disorder, and found differences in activity. As with ASD, delayed diagnosis of ADHD has serious implications for females' physical and mental well-being. Studies have demonstrated an elevated prevalence of self-injury and suicide among adolescent females diagnosed with ADHD, thereby highlighting the unique severity of ADHD in this demographic (Hinshaw et al., 2012). Data also suggests a lower likelihood of referral for mental-health services for girls who exhibit symptoms of ADHD (Ohan & Visser, 2009). The vast majority of academic and clinical research is focused on male individuals with ADHD, leaving significant gaps in evidence and reduced abilities to form clear conclusions on sex differences within ADHD and the female/non-male presentation (Carucci et al., 2023; Stroth, 2022). There are also significant gaps in the academic literature about ADHD in gender-diverse individuals and research generally reflects a focus on binary understandings of gender and a biomedical focus. 14 4.3 Value of Qualitative lived-experience research on ADHD and ASD There is an increasing amount of qualitative lived-experience research on ADHD and ASD but it should be noted that the majority of the research tends to be made ‘about’ individuals rather than research where there is genuine participant collaboration informing the direction of the study. Disability strategies, including New Zealand’s Disability Strategy (Office for Disability Issues, 2016), all reflect the importance of lived experiences reflecting the Neurodiversity Paradigm and Social Model of Disability. The benefit of lived experience research is that provides valuable insights into the complexities and intricacies of living with neurodivergence. Redshaw and McCormack (2022) explored how some individuals with ADHD make sense of their life experiences, the mechanics of daily functioning, and also the advantages of being ADHD. For example, individuals with ADHD reported having strengths as a result of ADHD, including “hyperfocus”, creative problem-solving, positivity and optimism, adventurousness, and curiosity (Redshaw & McCormack, 2022). In addition, qualitative research can reveal self- concepts and how people with neurodivergence make sense of their identity. Krueger and Kendall (2001) looked at these individuals’ preferential language choices for their self- identity, and found that they largely referred to themselves as “being ADHD” as opposed to “having ADHD”, suggesting that they saw ADHD as an important dimension of their sense of self. Qualitative research provide understandings beyond the basic medical understanding of simply having a disorder that causes variation from ‘norms’ and because they look at the strengths and meaningful aspects that come with ADHD and ASD. 4.4 Media coverage of neurodivergence There are limited nuanced discussions of ‘neurodiversity’ and ‘neurodivergence’ in academic literature, as they are new and constantly developing concepts – largely developing in online spaces within non-academic communities. Online media (traditional blogs, social media, and online news articles) are playing a significant role in broadening understandings of neurological diversity and reducing stigma. The roles that online media plays include: 15 increased communication and community-building between neurodivergent individuals; creation and sharing of information by neurodivergent individuals (and therefore raising awareness and reducing stigma); and enabling easier access to resources from professionals (McDermott, 2022; Siberry, 2023; Wickramasinghe, 2023). There has been some academic literature looking at the role the media plays for individuals with ADHD and ASD, however, this has still been very limited. Angulo-Jiménez and DeThorne (2019)’s research looked at first-person perspectives from autistic video web-bloggers, however, this had limited representation. The web-bloggers were mostly white male adults who self-identified as experiencing “Asperger’s syndrome”, and their content tended to be highly influenced by the Medical Model of Disability. While this research is valuable, it does not represent the wide-ranging experiences of ASD or neurodivergence in general by people from other demographic groups (e.g., gender, race, co-morbid disability(. Media has the potential to educate, raise awareness, and decrease stigma which aligns with the neurodiversity paradigm (Walker, 2014). Media reflects what society is paying attention to at a certain point in history, and there is a clear increased interest in neurodiversity. Media can also highlight the intersectional nature and complexities of living with, and being, neurodivergent. This is why media analysis was the focus of this research. 16 5 Methods 5.1 Epistemology, ontology, and theoretical framework. The object of this study is not to unearth a single reality – instead there are different ways of understanding what neurodivergence ‘is’, and how it informs and affects the experiences of ASD and ADHD for women and gender-diverse people and this is wrapped up in people’s individual contexts, how they are taught to communicate about ‘developmental disorders’ in general and to understand themselves. In this way, ‘reality’ is multiple – ontologically this aligns with a relativist approach (Fletcher, 1996). Trying to approach multiple realities in social research can be challenging, as I too am making meaning and shaping my interpretations of these blog entries and articles, as I try to understand what meanings they are conveying about their neurodivergence. I aim to honour their (constructed and contextual) meanings while recognizing that the stories they are telling at the time and place of the blog entry/article are always constructed. This study does not assume that everyone is comfortable with the neurodivergent label – there may be some people who have ASD and/or ADHD but do not identify as neurodivergent and/or disagree with the Neurodiversity Paradigm (Walker, 2014). However, for many individuals with ASD and/or ADHD the neurodivergent label is very valuable, and this is worth exploring. Epistemologically, this gestures at a social constructionist approach (Burr, 2015; Gergen, 1985; Gergen, 2009). I am interested in how different understandings/perspectives, language and contexts shape what is told and what can be told, and I seek to deconstruct this language and these contexts for the power they hold. All of the perspectives and knowledge around ASD and ADHD are simply perspectives at a particular time, in a particular socio-cultural location – and within that time and location exist contrasting opinions and understandings. This is relevant for a media analysis, as individuals are constructing language around identity and diagnoses in diverse ways. The Neurodiversity Paradigm (Walker, 2014) seems linked to the Social Model of Disability (Davis, 2016) and also Social Constructionism (Burr, 2015; Gergen, 1985; Gergen, 2009), in 17 that identifying as ‘neurodivergent’ is more about community and social self-identity, and the paradigm critiques societal barriers and stigma as disabling factors. My worldview, and therefore my research, is aligned with the Social Model of Disability (while still acknowledging that the Medical Model has valuable contributions, such as medication for ADHD). The Social Model of Disability (Davis, 2016) illustrates how when we understand disability as a socially-situated and political decision, and tied into broader social and institutional contexts – including political economies and norms around able-bodied society – we can better understand how we might respond to divergent lived realities of disability (including mental distress and neurodivergence) with compassion. It should be acknowledged that there is significant heterogeneity of experiences within neurodivergent populations – not just with particular diagnoses or labels, but also in regard to sociocultural context and privilege (Romero, 2018). For example, an able-bodied, university-educated, white woman with ASD will benefit from more societal privilege than a physically disabled, high-school-educated, woman of colour with ASD – despite their similar struggles and disadvantages with having ASD and being women (Romero, 2018). 5.2 Aims This research project aim was to do a media analysis of blogs and news articles that focus on neurodiversity and marginalized gender. The specific objectives are to explore how the media tells stories about diagnosis (I am interested in what does a formal diagnosis of ASD or ADHD mean to these individuals) and what the significance is of ‘neurodivergence’ as a concept and self-identifier for these individuals. I want to explore how these individuals are constructing neurodivergence in the way they write about it; whether it is from a perspective of deficit and disorder, or from a perspective of a strengths-based identity; and whether neurological difference is being constructed as positive, neutral, or negative. 18 5.3 Data Collection I specifically chose media analysis and to analyse online blogs and online news articles, uploaded between 2012 and 2022 for the following reasons: 1. The neurodivergent community is most visible online and this is where the community are sharing information and finding information. 2. Social media tends to produce shorter-form content that people react to. More traditional media is more in-depth and reaches a different audience. 3. I wanted to look at blogs for lived experiences and news reports as something the public would be exposed to. Inclusion Criteria: A major challenge for me was making decisions about inclusion criteria, as this is a new and hugely broad area of research. There are countless aspects of identity, intersectionality and experience that could be explored, however, there were limits to the scope of this project. After weeks of reflection, I ultimately decided my project would include media articles written by, or about, ADHD/ASD/neurodivergent individuals of marginalised gender (women and gender-diverse) – i.e., first- and third-person accounts. For the purposes and limits of this study, participants with ‘marginalised gender identities’ is inclusive of women, non-binary and gender-diverse people, particularly focusing on those who were assigned female at birth (AFAB). By no means does this imply that this is the full range of marginalised gender identities in society, but simply that certain parameters around participant criteria needed to be set for this particular project. This study includes both those with a formal diagnosis of ASD and/or ADHD, those who suspect they have ASD and/or ADHD, and those who self-identify as ‘Neurodivergent’ regardless of having received a formal diagnosis – in recognition of the barriers and difficulties in receiving formal diagnoses, especially for those of marginalised genders. It is not within the scope of this study to cover all of the possible diagnoses or labels that can fit within the Neurodivergent umbrella (such as Tourettes, dyslexia, etc.). My decision process 19 is outlined in Figure 1. A list of the sources I used to analyse can be located in Appendix D. In summary, I analysed 13 sources total (seven first-person and six third-person). Five of the sources were from New Zealand and eight were from international sources. Figure 3: Data Selection Process 20 5.4 Reflexivity I consider myself to exist as sitting somewhere between ‘insider’ and ‘outsider’ status in relation to the research (Dwyer et al., 2009). As someone with neurodivergent friends and family members, as well as being a person of marginalised gender who experiences symptoms of inattentive-type ADHD and sensory issues, and self-identifies as neurodivergent, I do consider myself to have some level of lived experience. As a frequent user of TikTok, I consider myself reasonably immersed in the community, and as fairly knowledgeable of the salient topics for the community. Reflexivity is important in qualitative research to ensure high-quality data (Whitaker & Atkinson, 2021). To ensure this, I had regular meetings with my supervisor, where I could openly reflect and discuss my thoughts and feelings about my research as I progressed through it. 5.5 Ethics There were minimal ethical issues to consider as the media sources used were from publicly available on-line sites with no human participants, so I completed a low-risk ethics application (4000027651). However, I did consider the Massey Code of Ethics and the Treaty of Waitangi and made sure to be responsive to key considerations, such as seeking guidance on how to be culturally responsive and sensitive to the communities involved. 5.6 Data Analysis For the data analysis, I conducted a thematic analysis of media sources, following iterative processes as outlined by Braun & Clarke (2006). Thematic analysis is a technique for finding, interpreting, and reporting themes, in which the data set is minimally organised and descriptions and interpretations are richly detailed. The active role of the researcher in iteratively interpreting and immersing oneself in the data, identifying patterns/themes, conducting analysis, and presenting the findings to the readers is a crucial aspect of thematic analysis. Thematic analysis has the benefit of being flexible and adaptable to many different theoretical and philosophical positionings. I am working with a range of data – half 21 of the dataset is in first-person, the other half in third-person – and thematic analysis allows simple analysis of these different types of data. Freeman and Sullivan (2019), outline the process of thematic analysis as organising a given set of data into primary strands of interest. ‘Themes’ refer to recurring elements, such as concepts, topics, or ideas, that hold significance or meaning within a given dataset in relation to the researcher’s point of view and the research objectives. I worked through the steps as outlined in Braun and Clarke’s (2006) phases of thematic analysis (for a description of my journey through these steps, see Table 1). I took a semantic approach, i.e. the themes are discerned from the overt or manifest content of the data, and the researcher is not seeking to uncover any latent or underlying meanings beyond the participant's verbal or written expressions. Table 1: My journey through Braun & Clarke’s (2006) phases of thematic analysis Phase Description of the process 1. Familiarizing yourself with your data: I immersed myself in the data so that I was familiar with the scope and content of the data set, until I knew it very well, noting down any initial reflections. This phase involved what Braun and Clarke (2006) term ‘repeated reading’ of the data, reading it many times and continuously going back and forth between reading, analysing, and writing. 2. Generating initial codes: In this phase, I systematically coded features of my dataset that were intriguing, thought-provoking, important, and/or repeatedly appearing, and then organised data related to each code across the total dataset. 3. Searching for themes: This phase involved organising my codes into possible over-arching themes - compiling any relevant data for each possible theme. 4. Reviewing themes: In this phase, I ensured there was coherence between my themes and the coded extracts, as well as my total data set. I used many visual tools (e.g. mind-maps) during this phase to visualise my data in various ways and aid my decision-making process. 5. Defining and naming themes: I conducted a continuous and iterative analysis to enhance the precision of each of my themes and the overarching narrative I am conveying through the analysis. This process involved the formulation of titles for each theme. 6. Producing the report: In the final stage of my analysis, I settled on four main themes with varying amounts of sub-themes in each theme. I selected the most interesting extracts, and worked on relating my findings to my research topic and the current literature. 22 I initially looked at the first- and third-person data quite separately - coding and thinking about what each perspective talked about that was in-common, but also what each perspective uniquely offered. I also considered if both accounts were necessary considered the following as I looked across first-person accounts. The questions I was considering when choosing the media articles I would analyse are outlined in Appendix E. I wanted to consider issues of accessibility, equitable outcomes, and social justice. Further, I wanted to engage in a project that was sensitive to preferred language choices and pronouns. 5.7 Looking between the data Firstly, I summarise the initial themes in the data between international and New Zealand articles (Figure 1). The themes were somewhat consistent across International and New Zealand articles as they mentioned similar ideas but to different extents. While this was not the focus on my analysis Figure 1 illustrates two important differences that are reflected in the themes. New Zealand articles mentioned diagnosis delays five times more than international articles and institutional ableism in Universities in New Zealand was important but not for international articles. Similarly, themes were somewhat consistent across first-person and third-person articles as illustrated in Figure 2. The first-person account unsurprisingly tended to focus on personal experiences. Of note to the upcoming themes, is the first-person focus on women not being believed or misunderstood and the value of the neurodivergent label were prominent. Interestingly, it was third-person accounts that pointed to the inaccessibility of diagnosis and talking more of functional impairments. 23 Figure 4: International vs. New Zealand – Theme Differentiation 24 Figure 5: First vs. Third-Person Accounts – Theme Differentiation 25 6 Findings Across all of the blog entries/articles, there were four themes that stood out for analysis: Table 2: Main Themes and Sub-themes Main Theme Sub-themes 6.1 - ‘Gendered Differences – Experiences of Neurodivergent Women and Gender- Diverse People’; 6.1.1 - Lack of awareness 6.1.2 - Gender bias in diagnostic criteria 6.1.3 - Gendered Differences in Symptoms 6.1.4 - NDMG experience of the world is different 6.1.5 - Gender and sexual diversity 6.2 - ‘Education and Awareness’; 6.3 - ‘Intersectional Inequity’ 6.3.1 - Inaccessible Diagnosis 6.3.2 - Inaccessible Support and Treatment 6.3.3 - Importance of Diagnosis 6.4 - Neurodivergent Identity 6.4.1 - A sense of community 6.4.2 - Neurodivergent self-identity Within each of these themes, there are sub-themes or codes which further specify the salient domains. It is important to understand that there is much overlap within themes and between themes, and everything is interconnected and affects each other – gendered differences cause barriers to access but are also affected by barriers to access, and so on. The four themes will be explored using article excerpts and discussion of key points, with attention paid to the intersectionality of the authors’/subjects’ experiences. 26 6.1 Gendered Differences – Experiences of neurodivergent women and gender- diverse people. 6.1.1 Lack of awareness The lack of awareness around ASD and ADHD led many to think that the disorders did not even exist for girls, women, or gender-diverse people. Parents of male neurodivergent children were unaware of the same disorders in their NDMG1 children… “If I’d known about female presentation, I would’ve known that Lex was autistic. I would’ve been a better mother. I’d have known she was struggling. I knew that our son was autistic, but because she seemed such a vibrant, outgoing child, it never occurred to me that Lex was too.” (A3). Furthermore, even NDMG themselves who have male family members with ADHD were not immune to being uneducated about this… “My brothers also have ADHD. My eldest brother was diagnosed at five. Up until recently, I thought that ADHD only affected little boys who were naughty in class, but actually, I had it too as a little girl. Although it presented itself differently.” (A4). And, even when NDMG learn that ADHD and ASD are not restricted by age or gender, and that it has differing presentations, there are still immense difficulties getting that recognised by others… “The idea that young adults, particularly women, actually have ADHD routinely evokes skepticism.” (A1). Comments such as “but you don’t look autistic” (A3), as though ASD has some sort of distinct visual appearance, or even flat-out denial – ““No you’re not.”” (A3) - were common reactions. The misconceptions are so entrenched in society, even professional opinion was not enough to convince some… “My peers were also confused, and rather certain my psychiatrist was misguided” (A1). 6.1.2 Gender bias in diagnostic criteria The media pieces commonly brought attention to the flaws in clinical diagnostic systems – in particular the stereotype of “hyperactive, young white boys” (A1) for ADHD, or white boys who cannot give eye contact for ASD. This highlighted long-standing historical gender biases in medical data… “Up until the 1990s, there wasn’t a lot of pressure for women to be 1 NDMG = Neurodivergents of Marginalised Genders 27 included in studies, so a lot of the studies we have on these conditions have been based on men and boys, which has encouraged a lot of stereotypes.” (A6). The media utilised the voices of professionals in the field to back this up, such as clinicians discussing early clinical studies and how diagnostic criteria “overrepresent the symptoms you see in young boys, making it difficult for girls to be diagnosed” (A1). As well as more of the diagnostic clinical evidence being based on boys, the behaviour of ADHD boys tends to be more externalising, and therefore more obvious and disruptive to those around them, than ADHD girls who tend to be more internalising. “There are three genres of ADHD: Hyperactive-impulsive, inattentive, and a mix of the two. Hyperactive-impulsive is most prevalent in boys, and far more visible than the inattentive, daydreamy kid doodling in a corner.” (A11). These gendered biases in diagnostic clinical evidence are similar for ASD. The articles spoke of NDMG spending time and energy for anywhere from 5 years to 70 years to get the diagnoses that boys automatically got during their childhood years…“generations of women have been overlooked and often arrive at a diagnosis decades after their male counterparts” (A3). ADHD/ASD diagnoses often takes many unsuccessful attempts and misdiagnoses… “It took 10 years, 14 psychiatrists, 17 medications and 9 diagnoses before someone finally realized that what Maya has is autism” (A9). The mental and physical damage as a result of delayed diagnosis can have devastating consequences on an individual… “Earlier this year I walked into my GP’s office as a broken, burnt out, frustrated and depressed young woman for at least the fifth time in three years.” (A7). The longer the delay, the more significant the negative effects on well-being and self-worth… “Seven decades of not knowing has taken its toll” (A3)… “It’s a long time to think you’re irreparably broken.” (A11). The value of simply receiving a diagnosis can be deeply healing for individuals, validating years of trauma and invalidation… “I am autistic and have ADHD – it just explained my whole life. I could have been a totally different person if someone had noticed.” (A8). Thankfully, there seems to be some movement towards increased diagnosis for NDMG, with a “…recent immense wave of women and non-binary people in their twenties, thirties and forties who were often told they have a mood disorder, such as anxiety or depression, but subsequently received a life-changing diagnosis of ADHD or autism” (A8). 28 One media article suggested the underlying causes for women being diagnosed later in life… “why does diagnosis come so late for women in particular? …The simple answer to this complicated question is a combination of masking, misdiagnosis, and misconception.” (A8). Firstly, masking disguises visible neurodivergent symptoms… "Because of this they can present to clinicians as having a social understanding which they wouldn't see in autistic boys and men so they can go 'oh therefore she can't be autistic'." (A13). Table 3: Neurodivergent Vocabulary Term Definition Usage Masking A type of imitation or compensation used by neurodivergent people, to ‘mimic’ the behaviour of neurotypical people, in order to blend/fit in. Masking is a “social survival strategy” (Heathline, 2021), used most commonly by autistic people, to appear neurotypical. Ways that neurodivergent people mask include observing, researching and memorising social cues, and practicing and self-monitoring facial expressions and body language. Secondly, misdiagnosis plays a large role in delayed diagnosis, as “Most therapists and physicians are not up to date, so these underlying differences [go unnoticed] for years and years. What happens for many women is that they land in a therapist’s office complaining of anxiety and depression, and that’s all that’s acknowledged. There is no probing for underlying sensory or neurological differences. So it’s usually later in a woman’s life that they will get to a point of trying to figure out what’s really going on.” (A6). The media repeatedly told stories of NDMG facing a “lifetime of misdiagnosis” (A3). Further, there is also some evidence that diagnostic measures are not suitable for NDMG, especially individuals with ASD… ” It’s the long list of diagnoses Maya collected before she was 21, from borderline personality disorder to agoraphobia to obsessive-compulsive disorder, that begin to hint at how little we understand autism in women… The psychiatrist didn’t explain exactly what he was trying to assess. Literal to a fault, Maya didn’t explain what she meant by her answers. She left his office with her eighth diagnosis: paranoid personality disorder.” (A9) 29 Issues of discrimination and disbelief are at the individual level through to the systemic level, and this has widespread, devastating impacts on NDMG… “Misdiagnosed as anxious, depressed, or simply “sensitive,” many women don’t learn about their neurological differences until they are adults. The result, Nerenberg suggests, is a “lost generation” of women, riddled with shame and low self-esteem, who “have no name for their life experiences and feelings.” (A6). NDMG face significant barriers receiving even the most minimal support that neurodivergent males automatically receive… “Nobody questions a man when they say they’re autistic; the reaction would be more, “Let’s see how we can help you.”” (A3). 6.1.3 Gendered Differences in Symptoms In terms of ADHD symptomatology, NDMG… “tend to be less hyperactive and impulsive, more disorganized, scattered, forgetful, and introverted” (A1). One neurodivergent woman described herself as “tornado-level messy, dreamy and distractible, constantly misplacing things and losing track of time” (A5). The monotonous yet ‘basic’ parts of daily life, activities which require ‘executive functioning’, “things that are simple and routine to other people— like buying groceries, making dinner, keeping track of possessions, and responding to emails—do not become automatic to these women” (A1). The media utilised comments from a professional in the field to back this up, saying that for women with ADHD, rather than the typical expression of hyperactivity, instead… “It’s this sense of not being able to hold everything together.” (A1). Some described simply that they “experience the world differently” (A2), and mentioned different symptoms such as “emotional dysregulation and sensory overwhelm” (A2). Some women with ADHD can even appear to be functioning totally ‘normally’ on the surface, successfully playing the role of a “driven adult female who found the strength to sit through biology lectures and avoid major academic or social failures” (A1). The same goes for autistic NDMG – experiencing some of the typical symptoms including “lack of eye contact, fixating on a specialist item or topic, and not recognising social cues” (A13), however, “on average, girls are more chatty, less disruptive and less likely to be 30 entranced by trains or moving vehicles than boys are” (A9)… “Women fly under the radar as their special interests, like animals, make up and celebrities, are deemed more acceptable” (A13). Furthermore, autistic women tend to be more adept at neurotypical social behaviours, and there have been cases of women “told she couldn't be autistic because she made eye contact - which autistic men tend not to do” (A13). The media highlights that neurodivergent women in particular often develop symptoms later in life - “symptoms may not emerge until college for many girls” (A1). This is partially attributable to increasing responsibilities and independence making autistic and ADHD traits more obvious, but also, interestingly, puberty and hormones also seem to play a role in this. While a “decrease in symptoms at puberty is common for boys, the opposite is true for girls” (A1). 6.1.4 NDMG experience of the world is different Some articles suggested that the differences in symptoms for NDMG are only partially to do with actual gender/sex differences, and more to do with different gendered social expectations and social learning. “…we cannot deny that men and women experience neurodiversity in very different ways, in large part because of how society molds us. Where women are taught to internalize, men are taught to externalize. And the patriarchy often gives cisgender men a pass on feminized tasks, like maintaining households or relationships. These tasks require a high level of executive function and emotional regulation, which those of us with conditions like ADHD find exceptionally challenging” (A5). In addition to this, NDMG experience neurodivergence differently, because of sexist connotations around certain emotions or sensitivities… “synesthesia, sensory processing disorder, and high sensitivity… across these conditions, there’s often a common thread of heightened sensitivity. “Sensitive” is obviously a word that—along with labels like “hysterical” and “emotional”—has often been weaponized against women in particular.” (A6). Furthermore, the experience of women, in a patriarchal society with deeply rooted systemic misogyny, means that “when the symptoms intersect with gender, the lived experience of a woman with autism can be dramatically different from that of a man with 31 the same condition.” (A9). The same is true for gender-diverse people, in a society that has historically been, and in many places continues to be, extremely queer-phobic… “the socialization trajectory is different… People never took that into account when they’re studying autism.” (A9). The media spoke of the ways that womens’ struggles are somewhat normalised in our patriarchal society, and there is a level of tolerance for women’s suffering – “with a woman, it’s “Well, you’ve managed so far…”” (A3). Notions of the ‘hysterical’ woman, the ‘overly sensitive’ woman, and the ‘drug-seeking’ women were unsurprisingly prevalent in NDMG experiences of the medical professional. There is an incredible amount of gaslighting and disbelief that would cause total outcry in other areas of health… “Nobody asks a visually impaired person to make more of an effort to see.” (A3). This is when the notion of the ‘angry woman’ comes into play, out of pure desperation and frustration… “you’ve learnt that you mustn’t kick up a fuss, so you don’t know how to articulate when there’s a problem, when you don’t trust that you’re going to be heard. So there’s a feeling that the only way to be heard, to get authority to listen, is to shout. So you start believing that you are rude. You’re thinking, “I’m not a rude woman,” but that’s how you’re treated if you’re autistic. It shapes not only your personality but other peoples’ perceptions of you. It makes you easier to become the victim. Otherwise you’re just seen as a meddlesome, difficult woman. It’s so unfair when all you’re wanting to do is to just be heard” (A3). 6.1.5 Gender and sexual diversity Across the majority of the media pieces there was significant attention drawn to first-person accounts of expressions of gender fluidity and challenging sexual and gender norms – and within these accounts there was significant diversity. There were gender-diverse people who identified as non-binary and spokes of experiences of gender fluidity… “ADHD kids are more likely to be gender diverse too, but gender diversity is severely unrepresented in studies.” (A11). Neurodivergent people brought significant attention to the fact that because of the way their brains work, they do not see societal and gender norms in the same way, and therefore express their gender in diverging ways. For example, women who challenged stereotypical femininity, identifying as a “tom-boy”… “I’ve always loved cars. 32 Cars, space, history and reading. I’ve no interest in hair, make-up, shopping or going out for lunch. I seem to have honed in on a masculine environment… it doesn’t seem to fit the stereotypical way a 45-year-old mother of three should be living” (A3). There were also cis- gender women who identify as ‘queer’… “Quite a few women have got in contact to say it’s made a big difference to them, us speaking up about being both autistic and queer. There seems to be a real crossover and we wanted to talk openly, in the hope that it might help others.” (A3). There was also discussion of trans-identity and the way that discussion about gender transition opened up discussions about neurodiversity…. “Being perceived as "messy" or "oblivious" or "anti-social" feels like a failure to live up to the dictates of femininity, or a reinforcement of undesirable stereotypes around masculinity, in ways that sit very poorly with how people actually experience their own genders. Friends told me how they've internalized pressure to be smaller, to defer to others, to hide their struggles, to go it alone. Multiple people described to me how, after undergoing a gender transition, they found themselves newly open to the possibility that they might be different from the societal norm in other ways, and ended up pursuing an ADHD diagnosis as a result.” (A5). One parent spoke of the struggles and their perceived failures in dealing sensitively and compassionately with the complexities of raising an autistic and queer child… “We had lots of clashes and I wasn’t accepting of your sexuality for a long time. If I’d known you were autistic and known that autism and queerdom often go hand in hand, I’d have got there a lot sooner.” (A3). The media highlighted the term ‘neuroqueer’ and how some individuals experience their neurodivergence and their queerness as inseparable – an idea that Dr Nick Walker has discussed extensively… “I seek out LGBTQ people, and the ones that I find I make friends with tend to all be neurodivergent. There’s a huge overlap. I use the word ‘neuroqueer’ for myself because I can’t separate the two.” (A3). 33 6.2 Education and Awareness The media consistently highlighted and challenged misconceptions about ADHD and ASD, and providing accurate information from professional researchers and from lived experience about what these disorders are like for NDMG. Common narratives about ADHD include invalidating beliefs such as, “It’s not that bad” or “Everyone’s a bit ADHD”. One media piece described NDMG who “would like to see acknowledgement of ADHD as the debilitating struggle that it is, rather than a euphemism for “hyperactive” or “lazy.” “People say “oh I’m like that too”, because they sometimes can’t be fucked studying, but it doesn’t seriously affect their life. That’s an example of how ADHD gets downplayed and invalidated.” (A11). On the other hand, there are simultaneously conflicting misconceptions about ADHD that individuals with the disorder cannot be successful… or on the flip side, that if you are successful, you can’t have ADHD… “I’ve always been a high-achiever and naturally intelligent, so my ADHD didn’t get picked up in any of my schooling as it might in youth, and I’ve always set meticulously high standards for my performance across work, schooling and social activities.” (A7). Furthermore, “The irony is that their struggles are often greater because of their achievements, often in education or work, meaning they are even less likely to be believed and more likely to be misunderstood” (A3). The media challenged harmful narratives about ADHD, including exaggerated claims that ADHD medications can be “purchased in a library” (A1) and “concerns of too-liberal diagnoses and over-medication” (A1). Many people are concerned about the impacts of this on educational institutions, with fears that ADHD medication and that “Adderall and other “smart” drugs “have become to college what steroids are to baseball”” (A1). In addition to challenging beliefs that there is widespread recreational use of ADHD medications, the media also highlights the widely inaccessible nature of such medication. “I’m on Ritalin now which is much better, but [Student Health] wouldn’t give it to me until this year because they were worried about the “street saleability”, which is such a horseshit excuse as well as being extremely offensive.” (A11). 34 The media also disputed myths about autistic NDMG… “”…you’re too clever, you’ve got a job, you can hold down a job. You’re married, you’re a mother.” Why would someone question our diagnosis, like they think they know more about it than we do? It’s so arrogant.” (A3). The media highlights the painful impact of these myths, such as the misconception that individuals with ASD lack empathy and are disengaged from social interactions… “…the hardest thing is the stereotypes. "The perception of autistics having no feelings is b......t. We have so much empathy it hurts."” (A13); “feedback I’ve received from anyone else who’s ever expected anything of me is that I’m actually a toxic, unreliable, wasteful, slovenly liar” (A2). The experience of being misunderstood started from a young age for many NDMG… “I remember a teacher telling me she would chop my hands off if I didn’t stop fidgeting. That was the only way I could calm myself and I remember feeling so anxious sitting on my hands so I wouldn’t move around.” (A4). This has significant impacts on self-worth… “I believed with my whole heart what I had been repeatedly told: that I was broken” (A2). The media brought significant attention to, and challenged, the constant stigma NDMG face about who they are as human beings, occurring due to a lack of understanding and education in society. 6.3 Intersectional Inequity – Barriers to Access 6.3.1 Inaccessible Diagnosis The media continuously highlighted the inaccessibility of adult diagnosis through public systems, as the bar for eligibility criteria seems to continuously move further out of reach… “At the end of a really painful two-year process of meetings after meetings waiting to see if I could get any support, I was told I wasn’t eligible” (A4). In New Zealand in particular, many adults cannot even access public ADHD/ASD diagnosis full-stop… "If you're an adult some of the DHBs don't do the diagnosis, or won't, and so a lot of adults have to go privately for diagnosis - and it's an expensive process.” (A13). This is further compounded when NDMG try to pursue tertiary education. “Funded” student health clinics are meant to be a more affordable and accessible healthcare option for students, however, this system is not working for NDMG seeking diagnosis… “Getting 35 diagnosed through Student Health is taxing as fuck… You wait for a screening questionnaire. You wait another eight weeks for a review. Then it can be more than a year for a $750 assessment. The alternative is finding a private psychologist for ~$1000, should they have availability. This doubly sucks when ADHD’s symptoms include impatience and disorganisation.” (A11). 6.3.2 Inaccessible Support and Treatment As experienced by people with many other mental health conditions, there is huge inaccessibility of support/treatment through public systems and student health clinics. However, what adds another level of inequity for NDMG is the lack of specialised knowledge about the intersection of neurodivergence and marginalised gender if the individual does manage to access services… “Even after a girl gets the right diagnosis, she may be offered behavioral therapy and specialized lesson plans, but they’re essentially the same services offered to a boy in the same situation. Scientists and service providers rarely acknowledge the additional challenges being female may bring, whether physical, psychological or societal.” (A9). Many support services available are not fit-for-purpose for NDMG as many will not provide support without an official diagnosis, which is financially out of reach for most students… “the outreach for these services are targeted at people in a complete state of crisis, who need the services urgently. Olive feels that the existing support could be improved when it comes to students who are “high functioning”. These students are still technically performing academically in their studies, but behind closed doors are struggling hugely with motivation and dark thoughts, which makes achieving these results a total fucking battle.”” (A12). It can feel like constant doors being slammed in NDMG face when they reach out for support only to be ineligible. 6.3.3 Importance of Diagnosis The media highlighted the immense value of diagnosis, and how it can help individuals find self-worth, with one author describing how they “have discovered the virtues of a little self- 36 love, a lot of self-forgiveness” (A1). Diagnosis opens up a world of services, knowledge, and resources, which can be life-changing for individuals who have struggled alone for a lifetime. “My diagnosis has also given me the tools to start treating myself with compassion, and life is already so much easier.” (A2). Diagnosis often is the final puzzle piece to help individuals make sense of their experiences… “I struggled with ADHD all my life but I didn’t know it until I was diagnosed at 32... I realised ADHD was the root of my depression and anxiety and I was able to get the right support and start the healing process.” (A4). Diagnosis was repeatedly referred to as empowering and validating, and helps individuals recognise how well they have been doing to navigate life as a neurodivergent person in a neurotypical world… “I used to admonish myself constantly and view all of my struggles as my own fault, calling myself lazy and stupid and worthless… I’m starting to give myself credit for the sheer efforts that I have made in life.” (A11). Further, formal diagnosis is a way for NDMG individuals to have their struggles recognised by others in their lives. Accessing professional diagnosis and support/treatment is simply not an achievable reality for many NDMG individuals. As a consequence, many eventually turn to the internet for information and self-diagnosis… “Cat became aware of her potential ADHD after resonating with online accounts. She related to their lived experiences of hyperfixation, disorganisation, lack of focus, and rejection sensitivity.” (A11)… Online media gave NDMG individuals a sense of empowerment, improved self-worth, and legitimised self-diagnosis and neurodivergent self-identity. “While you didn’t get a formal diagnosis, you did do all this research, and you write about how empowering it was to realize that there were labels that fit your own internal experience, and that other people experienced the world in a similar way.” (A6). 6.4 Neurodivergent Identity 6.4.1 A sense of community Online media can create a place of community for NDMG individuals…“The internet has been huge for allowing neurodivergent women to connect and empower one another…. Without those online spaces, life can be more isolating if you don’t have anyone in your 37 immediate circle who understands what you’re going through.” (A6). This has significant consequences in improving mental health and increasing opportunities for positive social interaction – something that can sometimes be very challenging for NDMG individuals. “The number of autistic women she found online since being diagnosed gave her hope she will have a better life.” (A13). The media framed online spaces as predominantly positive for NDMG, as individuals have taken to the internet to co-create and share information, and develop the communities that have been missing. There was significant cross-referencing between articles, demonstrating the interactive co-creation of online information about NDMG. 6.4.2 Neurodivergent self-identity The media legitimises neurodivergent self-identity and disseminates information. Neurodivergent self-identity reflects a broad understanding of the challenges, unique experiences, and complex facets of identities within the community, but with the acknowledgement that they are all connected by neurology that differs from the ‘norm’. This has beneficial impacts on the way individuals understand themselves… “I’m not broken: I simply have a different neurology in a world not built for people like me” (A2). Neurodivergent self-identity is a strengths-based framework to view neurodiversity through… NDMG often have unique strengths and capabilities, regardless of how “valuable” they are perceived as in a neurotypical, neoliberal society… “There are so many gifts of being neurodivergent. It’s something that neurodivergent folks themselves talk about a lot. In our dominant neurotypical culture, they’re not often picked up on or valued as much… the ability to hyper-focus, the ability to detect nuance, a heightened attunement to moral alignment—having one’s actions reflect one’s values—are all huge gifts.” (A6). The media critiqued the inherent value in the medical model for all individuals… “It’s sort of every woman’s journey if they want to go the formal medical route, and it depends on life circumstances.” (A6). The neurodivergent self-identity is a recognition that the individual is the expert of their own life… “I get to choose my own labels” (A2). Furthermore, the media discussed possible future directions of diagnosis for NDMG, with the possibility of collaboration and co-creation with those with lived experience…“If all of these women are 38 finding one another, if they’re all discovering that they have a shared experience, and they’re discovering that outside of the formal medical or psychiatric diagnostic community, it calls into question what is diagnosis? Who is validating what? One thing that I’ve been thinking about regarding the future of medicine and psychiatry is taking a different approach to diagnosis—having diagnosis more powered by the people, where we first hear from people themselves about their actual experiences and start to group things together [from there].” (A6). The media discussed the idea that “diagnosis in the future should be more bottom-up.” (A6). This is where the value of the neurodivergent self-identity is extremely valuable, especially for NDMG, it allows these individuals a collective power to challenge current emphasis on bio-medical understandings. 39 7 Discussion The aim of this research project was to conduct a thematic media analysis of mainstream online media content (blogs and news articles) created by or about people of marginalised genders (women and gender-diverse people) with ADHD and/or ASD and looking at their perspectives and experiences of neurodivergence. The findings of the project included the following themes: ‘Gendered Differences – Experiences of Neurodivergent Women and Gender-Diverse People’; ‘Education and Awareness’; ‘Intersectional Inequity’; and ‘Neurodivergent Identity’. The media all pointed to gendered differences as being pivotal within the neurodivergent space, constantly drawing on the idea that the current DSM diagnostic criteria for ADHD and ASD are based on ‘young white boys’. Regardless of whether the articles were talking about ASD, ADHD, or neurodivergence in general, they all discussed gendered differences as being a significant factor contributing to misunderstandings, diagnostic delays, and experiences. This aligns with recent research which describes how women and gender-diverse people frequently and disproportionately experience delayed diagnosis and/or misdiagnosis (Calderoni, 2023; Tubío-Fungueiriño et al., 2021). This is troubling as diagnosis can aid neurodivergent individuals in understanding ‘why I am the way I am’, but frequently distress, discrimination, anxiety, and burnout mark the journey to diagnosis (Umbrella, 2021). Diagnosis is often extremely expensive, and not a financially viable option for many, with anecdotal estimations of cost in New Zealand for an ADHD assessment and diagnosis as high as $1600 (and that is before an appointment with a psychiatrist for medication) (Redgrave, 2019). Online media plays an important role in education around neurodivergence and increasing awareness, with two major benefits – it can be consumed by, and also contributed to by, anyone with an internet connection. Online media then becomes an important source of information on new terminology, lived experience, and community-based knowledge – by the community, for the community – and is often the first exposure for individuals to neurodiversity (McDermott, 2022; Siberry, 2023; Wickramasinghe, 2023). The online media 40 explored in this research project are providing immense value for NDMG individuals, providing gender-specific information on everything related to neurodivergence. Ultimately, neurodivergent self-identity allows the individual to join a larger community, and understand themselves within a new paradigm and social movement, outside of traditional understandings of difference (Walker, 2014). The media pieces focused on inequities for NDMG in particular – because though there are health inequalities at the level of wider society, and gendered health barriers for all women, there are additional barriers for NDMG. The inequities for NDMG are due to delayed diagnosis (Gesi, 2021) as a result of being missed/not getting diagnosed in childhood/adolescence through school and other health systems, and therefore ending up ‘set back’ in almost every area of life. The analysis shows there is clear value in Walker’s (2021) Neurodiversity Paradigm and the value of the ‘neurodivergent’ self-identity label for many NDMG. Until DSM criteria of ADHD and ASD better reflect the experiences of ADHD and ASD women and gender-diverse people, and until society treats such people more equitably and kindly, it is unsurprising that these people are seeking out their own strengths-based identities in online media. Neurodivergent self-identity, and the sense of community that comes with this, often allows NDMG to experience improved self-esteem and self-concept, as the Neurodiversity Paradigm celebrates neurodivergence as representing difference, but not deficits (Leadbitter et al., 2021; Walker, 2014). This is not to say that NDMG do not experience significant challenges, however, NDMG following this paradigm are encouraged to freely exist as their whole neurodivergent selves and celebrate neurodivergent modes of expression and communication (Disabled World, 2022). It is hugely validating for NDMG to recognize that society itself is a massively disabling factor, in alignment with the Social Model of Disability. The media can play a really important role in introducing people, both NDMG and wider society, to these paradigms and models - transforming the way society understands and talks about neurodivergence and marginalised gender. A further strength of the Neurodivergent Paradigm is that it takes an intersectional approach, acknowledging compounding institutional barriers based on factors such as gender, sexuality, and ethnicity (Romero, 2018) – which is why it can be so validating for 41 NDMG individuals. The media highlights the intersectionality between neurodivergence and marginalised gender, and the negative impacts on accessibility to accurate and relevant diagnosis, support, and treatment. The role the media is playing in education and awareness of this intersectionality is important for NDMG themselves, but also for increasing understanding from professionals and the general public. This is especially important when you consider that research indicates that there is a notable co- occurrence of transidentity and autism - and transgender autistic individuals often face discrediting of their transidentity and are particularly vulnerable to experiencing discriminatory treatment and unwelcome harassment (Bouzy et al., 2023). Therefore, there exists a necessity to increase awareness regarding the intersection of gender and autism (Bouzy et al., 2023), and thus, inclusive and intersectional paradigms such as the Neurodivergent Paradigm are of immense value in guiding future research and writing. The media shows that NDMG still reference the medical model and biomedical understandings to some extent, in valuing diagnosis and sometimes medication, which is why the improvement of diagnostic criteria is important. It was interesting to see that the media articles were often co-referencing each other, indicating that the community is already co-creating information – future steps should involve this being translated into the co-creation of academic and clinical research and content. There is a small amount of discussion and research covering the benefits of co-creating health-care-related content (Bishop, 2021), for example, that it improves health outcomes, engagement levels, and patient satisfaction. There is also discussion and research on the possibilities of enhancing primary care services and diminishing stigma surrounding mental illness by engaging individuals with lived experience in the design and implementation of mental health services. (Byrne, n.d.; Kohrt et al., 2021). Research also suggests that embedding lived experience into mental health academic research organisations may improve research relevance and destigmatize mental illness in academia (Classen et al., 2021; Hawke et al., 2022). Higher education and research in mental health should prioritise experience-based involvement in mental health and addiction care to improve mental health outcomes, and Experts by Experience (EBE) in the tertiary sector is a movement that may be able to help achieve this goal (Classen et al., 2021; Hawke et al., 2022), in addition to increasing collaboration/co-creation with service users and self-identifying neurodivergent people. 42 7.1 Limitations and future research The sources in this research report are particular samples of media, published in a specific time period, in particular socio-geo-political locations, and therefore there are limitations to the conclusions that can be drawn, and care must be taken with making any generalisations. It is noted that many of these accounts were posted during the COVID-19 global pandemic which is noted as being a significant factor in online users learning about, and sharing content on, topics related to neurodivergence (Wickramasinghe, 2022), and future research should look closely at the impact of this – I analysed a range of international sources and different countries will have lived through different experiences of the COVID-19 pandemic. Further, future research should focus on NDMG in Aotearoa New Zealand, and specifically examine experiences of neurodivergence for both Tangata Whenua (Māori) and Tangata Tiriti (Pākehā) individuals. There should be attention to the potential for increased collaboration between psychological professionals and the neurodivergent community. Future research should also explore further intersectional experiences of neurodivergent self-identity and self-diagnosis. 43 8 Conclusion In conclusion, online media published by and about NDMG are educating and raising awareness that women and gender-diverse individuals experience neurodivergence differently from males, and that they experience greater levels of inequity and inaccessibility. Further, the online media highlights the value of neurodivergent self-identity, helps to create a sense of community, and demonstrates the potential of the Neurodiversity Paradigm to decrease stigma and improve the overall well-being of NDMG. Lastly, the online media highlights the crucial role that people with lived experience can play in co- constructing clinical knowledge and diagnostic criteria. 44 9 References ADHD NZ. (2022). ADHD is more common than you think. https://www.adhd.org.nz/adhd-is- more-common-than-you-think.html Altogether Autism. (2022). 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