Page 1

GENDER IN AUTISTIC LATE-DIAGNOSIS NARRATIVES

KATE ELLIS

Supervisor’s Name: Emilia Nielsen

Advisor’s Name: Jake Pyne

Supervisor’s Signature:

Date Approved:

Advisor’s Signature:

Date Approved:

A Major Research Paper submitted to the Graduate Program in Critical Disability Studies

in partial fulfilment of the requirements for the degree of

Master of Arts

Graduate Program in Critical Disability Studies

York University

Toronto, Ontario M3J 1P3

July 2023

Table of Contents

Introduction

3

Method

4

Literature Review

8

Gender and Autistic Experience

8

Gender, Sex, and Late Diagnosis

12

Autistic Blogging

13

Theoretical Framework

15

Sample

17

Thematic Analysis

22

Gender leads to late diagnosis (because of inherent/biological factors)

23

Gender leads to late diagnosis (because of social factors)

26

Absence of discussion of gender

29

Critique of gender presentation labels

30

Critical Discourse Analysis

33

Discussion

39

Neurodiversity Paradigm, Pathology Paradigm, and Views on Autism and Gender

39

Shifting Viewpoints

45

Constructing Female Autism

47

Implications for Autism Researchers

51

Conclusion

52

Appendix A

53

Appendix B

53

Reference List

55

Abstract

In recent years, the discussion of how gender impacts autism diagnosis has been popular in both

academic and lay contexts, such as social media. In psychology, the idea of the Female Autism

Phenotype has particularly caught the attention of researchers as a possible explanation for why

autistic women and girls are diagnosed later. However, studies related to gender and late autism

diagnosis often do not consider how autistic adults personally perceive this link. Using thematic

analysis, this study analyzes the blogs of late-diagnosed autistic adults to understand whether and

how these individuals perceive a link between their gender and their timing of diagnosis. Critical

discourse analysis is also used to understand how understandings of autism, group affiliations,

and other factors may influence these perceptions. The study found that while the Female Autism

Phenotype and similar theories have been favoured by bloggers in years past, they have not been

regularly discussed by late-diagnosed bloggers in recent years. This indicates that autism

researchers who focus on gender’s role in late-diagnosis may not be in line with autistic

community priorities regarding autism research

Introduction

Recently, discussions of adult autism diagnosis have become more prominent, both in

academic (see also Huang et al. 2020; Price 2022; Lilley et al. 2022) and lay contexts, such as

social media (Heaton 2023; Fong 2022; Tabb 2023). Often central to these discussions is the role

that other identities, particularly sex and gender (see Hennekam 2020; Hayden 2020; Gesi et al.

2021), may play in certain autistic individuals not being identified as autistic in childhood. This

has led to theorizations of identifiable gender differences in how autism presents or manifests,

namely the Female Autism Phenotype. I have become particularly interested in how autistic

people view (or do not view) gender as linked to their late diagnoses when reflecting on their

personal experiences, as well as whether these perspectives are shaped by engagement with

disability theory, autistic (self-)advocacy movements, and/or autistic social media communities.

Furthermore, I seek to understand how autistic adults engage with medicalized understandings of

autism and gender, particularly out of the fields of psychology and psychiatry, as well as how/if

medicalized ideas are perpetuated, shifted, critiqued, and/or repurposed by autistic individuals

and communities.

In this Major Research Paper, I read the blogs of late-diagnosed autistic adults to

understand if and how they see a link between their gender (including gender identity, gender

presentation, biological sex, gender (non)conformity, and other related factors) and the (delayed)

timing of their autism diagnosis. Drawing on diverse fields, including Genre Studies (specifically

the study of autobiography and life writing), Critical Autism Studies, Rhetoric, Queer and Trans

Studies, Communciation, and Gender and Women’s Studies, this MRP takes a critical

interdisciplinary approach to the study of autism and positions autistic adults as experts on their

own experiences.

In line with my mission to establish autistic adults as experts on their own experiences,

blogs were specifically chosen due to the fact that they are owned and shaped by the autistic

community, rather than being publications with specific editorial standards that autistic

individuals are required to conform to. I aim to specifically draw on the work of autistic people

to produce an “insider view” (Harmens et al. 2022, 44), which becomes difficult when relying on

publications subject to intense editorial mediation and scrutiny, such as magazines and books.

Researchers have seen the use of autistic blogs in studies as a method to resist the frequent

oppression and misunderstanding of neurodivergent voices in research, particularly in interview

and survey-based research, instead representing community views unaltered by researcher

questioning methods (Harmens et al. 2022, 44; Petty et al. 2023, 3).

Overall, this study aims not to understand whether there truly is a link between late

diagnosis and particular gender identities or expressions, but rather how autistic adults personally

perceive this link. It also aims to critique gender-essentialist views of late autism diagnosis, such

as the Female Autism Phenotype, which position certain presentations and experiences of autism

as unique to cisgender women and/or people assigned female at birth and ignore the role that

social perceptions of gender may play in perceptions of autistic people.

Method

In the context of this study, I did not follow any specific age criteria for late diagnosis,

instead looking for individuals who personally identified as late-diagnosed or late-identified (as

well as those who used similar language to refer to their experiences). While some clinical

literature has stipulated an age requirement for who can be considered ‘late-diagnosed’ (see

Lilley et al. 2022), I want to recognize that individual circumstances and experiences may impact

one’s perception of diagnosis as ‘late’. This approach led to a sample mostly comprised of people

in their 30s at the time of diagnosis (four of out seven bloggers) with the final three bloggers

diagnosed at 26, 27, and 40, respectively. While this close age range provided a commonality

amongst research subjects, it is important to note that older adults are increasingly being

diagnosed as autistic (Leedham et al. 2020; Niekerk et al. 2011) but are not reflected in this

sample. Reasons for this may include that older adults are not as active on social media as their

younger counterparts or that they may be less likely to speak openly about their autistic identity

than their younger counterparts.

In my research, I did not necessarily intend to capture as many narrative accounts as

possible, but rather to engage closely with a limited number of them. I used a snowball sampling

method beginning with four prominent late-diagnosed bloggers that I am familiar with as an

individual who is active in autistic social media communities, particularly on Facebook. From

there, I followed the blogs they linked, mentioned, and collaborated with. For a blog to be

selected, it had to include long-form blogging content (e.g. written or video content, but not

micro-blogging content such as tweets), be created by one primary author, and have been

updated at least once in the year prior to the start of the study (i.e. since April 2022). As such, I

sourced materials only from single-authored blogs, not sites that various autistic authors

contribute to (e.g. The Mighty, The Art of Autism). To protect the privacy of bloggers who choose

not to widely share their work, only blogs that are completely public were included in the study,

therefore excluding any paywalled or password-protected content (e.g. that found on Patreon,

Medium, or Substack or included in email newsletters).

The snowballing method allowed me to find five additional bloggers who fit my criteria.

I echo Masschelein and Van Goidsenhoven’s (2016) broad definition of a blog as “an online

journal or diary, i.e. a user-authored site that takes the form of regularly updated web pages,

listed in reverse chronological order that can be commented upon by readers” (258). Recognizing

the diverse forms that communication can take, particularly amongst autistic people (Lees 2023),

my sample includes not only traditional text blogs (e.g. those hosted on WordPress or Blogger)

but also longer-form Facebook blogs and video blogs (also known as vlogs). To be a part of the

sample, blogs must also include significant discussion of personal experience, meaning that

blogs more oriented towards advice or advocacy are only eligible if they also include posts

entirely or mainly consisting of personal reflection. One video blog that I encountered (Autism

From The Inside) was excluded from the sample for mainly consisting of advice and education

videos without comparable discussion of personal experience.

Three other blogs were eventually excluded as they were deleted or otherwise became

unavailable over the course of the research period. While these blogs may be archived through

other means (e.g. the Wayback Machine), I chose to entirely omit them in order to protect the

privacy of the bloggers and respect their personal reasons for taking down their blogs. This is

particularly important due to the fact that autistic individuals have historically not been given

agency over their own stories, particularly by researchers (see also Botha and Cage 2022). As a

result, my final sample includes seven blogs, comprised of the four original blogs and three

additional blogs found through the snowball method. Though not intentional, the majority of

bloggers in this sample (four out of seven) identify in a way that falls outside of the gender

binary. However, it is unclear whether this is reflective of general trends within the adult autistic

blogging community or whether it is merely reflective of my personal perspectives on who is a

prominent late-diagnosed blogger from my own position as a non-binary autistic person.

However, all of the bloggers added through the snowball method identify as cisgender to my

knowledge.

From each of these blogs, I selected the posts which discussed late diagnosis, diagnosis

experience, gender/sex, and related topics most explicitly. This involved a multi-pronged search

approach: putting relevant keywords (e.g. ‘diagnosis’ or ‘gender’) into a search bar, if available;

pursuing the blog’s tags for relevant keywords, if available; and reading the titles of posts for

applicability to the themes studied. The final sample of blog posts includes two types of posts:

those that encompass a ‘diagnosis story,’ whether or not it mentions gender, and those that

discuss late diagnosis with implicit or explicit reference to gender.

After determining the posts to be included in my sample, I read the blog posts (or viewed

them while reading an accompanying transcript, in the case of video blogs), using inductive

coding. Once I generated a list of codes, I grouped them into relevant thematic categories for

analysis. In this thematic analysis, I only paid attention to the words being used and disregarded

any sound, visuals, or other elements in the blog posts.

Inspired by Shapira and Granek’s work on psychiatric cisgender-ableism experienced by

autistic transgender patients (2019), I also used critical discourse analysis to understand the

general bodies of knowledge and paradigms that individuals drew on in their work (e.g. the

pathology paradigm, neurodiversity paradigm, female autism phenotype, neuroqueer theory, etc).

I went in with an original list of discourses (see Appendix A) to guide this analysis (based on the

literature review) but was also open to additional discourses that emerged in my reading. In this

element of the analysis, I paid attention not only to the words within the blog posts but also to

any external sources that were linked or referenced.

Coding and labelling of discourses were performed simultaneously with the help of

Dedoose qualitative analysis software. The initial list of discourses were inputted as codes into

the software, with other codes being added throughout the analysis process. Coding is a

qualitative research method which allows a researcher to categorize their data into groups and

understand consistent themes throughout samples. This method was selected as my project aims

to understand both shared and diverging viewpoints amongst autistic bloggers with similar

diagnosis experiences, as well as how they communicate these viewpoints within their blogs. For

my purposes, coding involved labelling any sentiments about late autism diagnosis, autism and

gender, and the intersection of these two areas. Viewpoints were presented neutrally and without

researcher reflection (e.g. “Autism criteria is based on boys”) and in accordance with the

vocabulary used by specific bloggers (for example, “masking” and “camouflaging” both

appeared in the code list despite describing the same phenomenon). These codes were then

organized into four broad themes as detailed in the Thematic Analysis portion of the paper.

Critical Discourse Analysis, on the other hand, involved incorporating knowledge of

discourses present in the literature and applying them to sentiments present in blog posts. This

also involved relying on some of my prior knowledge as a scholar trained in Critical Disability

Studies to identify discourses not present on the initial list that were referenced or employed but

not necessarily explicitly named by bloggers (e.g. social model of disability, refrigerator mother

theory, human rights model of disability).

Literature Review

Gender and Autistic Experience

Psychologists, psychiatrists, autistic community members, and other stakeholders have

taken a number of (often opposing) approaches to theorizing how gender and sex impact autistic

experience (and vice versa). In 2002, psychologist Simon Baron-Cohen proposed the extreme

male brain theory of autism. This theory suggests that “the male brain is [...] defined

psychometrically as those individuals in whom systemising is significantly better than

empathising, and the female brain is defined as the opposite cognitive profile” (Baron-Cohen

2022, 248). Due to his observations of high scores on systematizing tests and low scores on

empathizing tests (compared to non-autistic men) among those then-identified with Asperger’s

Syndrome, Baron-Cohen suggests that autism is an “extreme form of the male brain” (251). This

theory extends beyond the brain, however, using biological sex characteristics like increased

testosterone levels (demonstrated through a high incidence of precocious puberty in autistic

boys) and even size ratios in fingers to demonstrate the ways in which autism could be a form of

‘extreme maleness’ (252). In Disability Studies Quarterly, Jordynn Jack (2011) notes how

through extreme male brain theory, “masculinity itself has been cast as a disability.” Jack

explores how extreme male brain theory “owes much to our current cultural preoccupations with

hi-tech culture and nerdom as well as with sex/gender,” as it helps to produce the most desirable

autistic figure: the ‘Asperger’s’ man who performs highly in technological fields. She also notes

how “competing theories tend to be marginalized, especially if they conform less easily to our

common understandings of sex/gender difference.” Ridley (2019) also critiques extreme male

brain theory, drawing attention to the way that it equates so-called male behaviour with a male

brain (22). Ridley cautions against using descriptions of gender differences in study results as an

explanation for the differences, explaining that “even a robust statistical difference between men

and women does not define the nature of male and female” (23). While extreme male brain

theory was once popular in autism research, it has been rarely written about in recent years

(Stagg and Vincent 2019; Ridley 2019).

In recent years, a distinctive profile of ‘female autism’ (sometimes referred to as the

‘Female Autism Phenotype’) has emerged in the psychological literature. The ‘Female Autism

Phenotype’ is a theory that fewer females are diagnosed with autism not because it occurs more

commonly in males, but rather because “their presentation of autism is qualitatively different to

the typical male presentation” (Hull, Petrides, and Mandy 2020, 308). The ‘Female Autism

Phenotype’ encompasses unique presentations of autistic traits, interests, and capabilities in

social relationships compared to what is conceived of as ‘classic’ (read: male) autism. Central to

this phenotype is the act of ‘camouflaging’ or ‘masking’: “the use of conscious or unconscious

strategies, which may be explicitly learned or implicitly developed, to minimise the appearance

of autistic characteristics during a social setting” (Hull, Petrides, and Mandy 2020, 309). Studies

often do not define ‘female’ or differentiate between gender and sex.

Outside of academia, the Female Autism Phenotype has circulated in autistic

communities, with lists of female autistic traits appearing online. In addition to the characteristic

of masking, traits on these lists often include things like emotional sensitivity, intellectual

giftedness, naivety, shyness, and co-morbid or false diagnoses of other disabilities such as

bipolar disorder, depression, obsessive-compulsive disorder, and anxiety disorders (Craft 2022;

p-3as-life-resources 2017; Hovet 2020).

While there is no official diagnostic instrument for the female autism profile, some

psychologists do administer questionnaires or interviews centred around this profile or

phenotype. While not exclusively used in diagnosing girls and women, the Camouflaging

Autistic Traits Questionnaire (CAT-Q) was partially developed based on research findings of

masking in girls and women and has been regarded as particularly useful in diagnosing girls and

women (Hull et al. 2019, 820).

However, autistic scholars have also begun to critique the notion of a distinct ‘female

autism’ phenotype. In their blog post for the University of Kent titled “Beyond ‘female autism’”

(2019), George Watts argues that while there are a number of ways that autism can present, there

is nothing inherently ‘female’ about the presentation that has been labelled ‘female autism’. In

the blog post, they recount their own experience coming to an autistic identity through

identifying with autistic women, noting that they “would argue that this resonance wasn’t

because they were female, it was because they are similar autistic people to me” (Watts 2019).

They suggest that the presentations of autism typically relegated to the category of ‘female’ are

not exclusive to women, but rather make up a larger category of ‘unrecognized’ presentations of

autism, even noting that a cis man started early ‘unmasking’ campaigns. Devon Price also

critiques the idea of a distinct ‘female’ autistic phenotype in his book Unmasking Autism (2022).

While he recognizes that “there’s a particular way the neurotype tends to present among people

who only discovered the identity late in life” (56) which corresponds to some of the traits

commonly associated with ‘female autism’, he rejects the notion that these traits are inherently

feminine, noting that they show up in autistic people with a number of gender identities. Price

argues that the notion of ‘female autism’ “presents the root of masking as being a person’s

assigned sex at birth, or their identity, when really it’s social expectations that lead to a person’s

disability getting ignored” (60). He is adamant that “masking is a social experience, not a

biological one” (60). These authors do not attempt to suggest that presentations of autism cannot

differ, but rather that to suggest they differ on the basis of gender identity or biological sex is

inaccurate and essentialist.

A number of individuals and groups have argued that there may be a correlation between

transgender and autistic identity. Various studies have shown elevated numbers of individuals

with autistic traits in populations presenting for gender-affirming care in comparison to the

general population (see Stagg and Vincent 2019; Nobili et al. 2018; Warrier et al. 2020).

More important to the purposes of this research, however, is how transgender autistic

individuals see these experiences as connected. In 2020, Jessica Kingsley published an anthology

of writing by transgender autistic individuals edited by Maxfield Sparrow called Spectrums:

Autistic Transgender People in Their Own Words. In the introduction for this collection, Sparrow

notes that

Being autistic and being Transgender, non-binary, or otherwise gender divergent have

much in common, both joys and struggles. The joys come from deep self-knowledge,

belonging to a community, living a life in tune with one’s inner being. A few struggles in

common include suicide, homelessness, and barriers to adequate healthcare. (2020, 18)

Throughout the anthology, a number of contributors suggested that their autistic and transgender

identitites are inextricably connected. For example, endever* corbin contributed an essay titled

“I’m trans and autistic, and yes (for me), they’re related,” beginning with the powerful line “My

gender is autistic” (81).

This connection has also been theorized through the broad concepts of neuroqueerness

and neuroqueering (Walker 2021), which aim to encompass concepts such as “how these two

aspects [neurodivergence and queerness] of one’s being entwine and interact (or are, perhaps,

mutually constitutive and inseparable” (161) and practices such as “embodying and expressing

one’s neurodivergence in ways that also queer one’s performance of gender, sexuality, ethnicity,

and/or other aspects of one’s identity” (162). ‘Neuroqueer’ is an intentionally broad category

designed to encompass the various practices through which neurodivergence and queerness

entwine, intersect, and are shaped by each other (167), meaning that while it does not exclusively

define trans/autistic experience, it is one way of thinking through and theorizing this experience.

Gender and Late Diagnosis

A number of studies have attempted to prove a link between sex/gender and late autism

diagnosis. Gender differences are a growing topic of inquiry in the research of late-diagnosed

autism, as demonstrated by a scoping review of the literature published about late autism

diagnosis from 2008 to 2018, where Huang et al. (2020) found 13 studies that explored gender

differences in adult diagnosis (1316). However, little attention has been paid to the specific

experiences of transgender and non-binary adults, even when they participate in adult autism

studies (1316). As with work related to the Female Autism Phenotype, studies in this area do not

typically differentiate between sex and gender when describing the ‘female’ population.

Rather, these studies have typically argued that so-called ‘females’ are more likely to be

diagnosed with autism later in life, often drawing on evidence related to the Female Autism

Phenotype. Reflecting on a study of 14 women diagnosed with autism in late adolescence and

early adulthood, Bargiela, Steward, and Mandy (2016) “hypothesise that this phenomenon

reflects both: (1) specific features of the female autism phenotype; and (2) characteristics of the

systems that are designed to identify and help people with [autism]” (3290). Similarly, in a study

of 11 autistic females diagnosed after age 40, Leedham et al (2020) argue that “findings suggest

widespread limited understandings of [autism] in females, which influenced late diagnosis in the

current sample” (145). Literature around late diagnosis and gender frequently refers to

camouflaging and/or “adaptive social compensational strategies” (Lehnhardt et al. 2015, 140) as

key aspects of the female autism phenotype and reasons for late diagnosis (see Bragiela,

Steward, and Mandy 2016; Leedham et al. 2020; Huang et al. 2020). Other studies have

suggested that co-occurring disabilities (e.g. anorexia, borderline personality disorder, social

phobia) seen more frequently in women may contribute to clinicians’ difficulty reaching an

autism diagnosis (Gesi et al. 2021).

However, these studies have not typically drawn on how autistic people perceive

connections between gender and late diagnosis. While some studies focused on the experiences

of late-diagnosed autistic adults in their own words (see Bragiela, Steward, and Mandy 2016;

Leedham et al. 2020), these studies did not ask participants about how they perceived their

gender as specifically relating to their late diagnosis and rather used similarities among women’s

experiences as evidence of gender differences.

Autistic Blogging

Relatively little has been written about autistic blogging to date. That being said,

historians of neurodiversity see autistic blogging as a key force in creating a powerful autistic

self-advocacy movement and shifting attitudes about autism. A number of blogs, digital

newsletters, and online forums are credited with contributing greatly to the autistic self-advocacy

movement, namely Wrong Planet (see Donvan and Zucker 2016, 502-505), the Residual Autism

Newsletter (see Silberman 2015, 435), autistics.org (see Tisoncik 2019), the Autism Hub (Eidle

2022), and neurodiversity.com (see Seidel 2019). Further, in Studies in Social Justice (2022),

Bridget Liang emphasizes that “both autistic adults and families of autistic children rely heavily

on blogs and other digital platforms to create community and gain experiential knowledge about

autism” (447).

Blogs (and the internet in general) have also been seen as a “safe” space for autistic

individuals to interact, due to the ways that they may better meet their needs/preferences around

communication and sensory input than in-person spaces (Nguyen et al. 2015; Seidmann 2019,

2281). Autistic individuals have expressed how hosting a blog allows them to create their own

personal space online where “they [the bloggers] are the ones who choose what and when to

discuss specific topics” (Seidmann 2019, 2282). It is in part for these reasons that I choose to

focus on blogs, rather than other media forms, in my work.

However, research rarely differentiates between blogs written by autistic people and those

written about autistic people. In her study of autistic BIPOC parent blogs, Bridget Liang (2022)

outlines the difference between ‘autistic blogs’ (those written by autistic people) and ‘autism

blogs’ (those written by non-autistic people, typically parents), to showcase the ways that

attitudes and orientations toward autism differ in these texts (447-48). To a similar effect, Van

Goidsenhoven (2017) proposed the term “autie-blogs,” a derivative of Couser’s

“autie-biographies” (1997, 7), to refer to digital life writing created by autistic individuals rather

than simply about autistic individuals. Throughout this paper, I interchangeably use “autistic

blogs” and “autie-blogs” to refer to these texts.

Few studies have used blogs to understand issues at the intersection of autism and gender.

In my review, only two such studies came up. In one of these studies, Shapira and Granek (2019)

use blogs to understand the reactions of people close to transgender autistic people seeking

gender-affirming psychiatric care. In this study, blogs are used to supplement psychiatric case

studies and show the reactions of laypeople (500). As a result, this study did not primarily focus

on the perspectives of autistic people, but rather on how they perceive the reactions of others.

Another study, conducted by Harmens, Sedgewick, and Hobson (2022) uses blog posts to

understand autistic women’s experiences and well-being during autism identification/diagnosis.

While the article details women’s experiences with late diagnosis, little attention is paid to how

women see their gender as relating to diagnosis. There is, however, one exception – one blogger

discussed her anxiety around seeking an official evaluation, saying that she “had heard stories of

women being refused referral due to eye contact with the GP” (48). As demonstrated by the

literature, the potential for using autistic blogs to understand experiences of gender and late

diagnosis has largely been unexplored.

Theoretical Framework

My research is rooted in Ian Hacking’s (2009) argument that autistic narratives are

“creating the language in which to describe the experience of autism, and hence helping to forge

the concepts in which to think autism” (1467). I am interested in how these narratives not only

describe an intrinsic experience of autism but also create the very category of autism itself, and

especially how these narratives create subtypes or profiles of autism (e.g. female autism). In line

with this, I work within Majia Holmer Nadesan’s frame that autism is socially constructed in

Constructing Autism (2005). In proposing this frame, Nadsean does not deny the possibility of

there being a biological basis for the experiences we call autism (2). Rather, she uses the phrase

‘socially constructed’ to point to the “social conditions of possibility for the naming of autism as

a distinct disorder and to the social conditions of possibility for our methods of interpreting the

disorder, representing it, remediating it, and even for performing it” (2). Rather than suggesting

that writing by autistic individuals is ‘uncovering’ and making visible the distinct and immutable

category of autism, I argue that autistic individuals are in fact writing autism into existence,

constantly reshaping the condition itself. I recognize the key role that autism-related media

(including that which is created by autistic people) plays in developing theories around gender,

sex, and gender presentation which are then adopted in clinical contexts (e.g. diagnostic

materials).

My research is deeply rooted in the neurodiversity paradigm. According to Nick Walker

(2021), neurodiversity recognizes that “there is no ‘normal’ or ‘right’ style of human mind any

more than there is one ‘normal’ or ‘right’ ethnicity, gender of culture” (19). This exists in direct

opposition to the pathology paradigm, which positions autism as a “disorder” to be treated and

cured (18-19). In line with the neurodiversity paradigm, I use the label “autism” rather than

“autism spectrum condition” (ASC) or “autism spectrum disorder” (ASD) throughout this

research, as some members of the autistic community find these labels pathologizing.

Furthermore, my project positions autistic individuals as experts in their own experiences

over the medical establishment in opposition to pathologizing views of autism (e.g. Theory of

Mind) that establish autistic individuals as unable to ‘truly’ understand themselves and others

(see Yergeau and Huebner 2017). It is also with this in mind that I personally conduct this

project from my standpoint as a queer, trans (non-binary/butch), autistic individual. Rather than

attempting to entirely avoid bias in my project, I conducted research as a member of online queer

autistic communities, using my knowledge and experience to guide my research questions and

determine my sample. Echoing Gillespie-Lynch et al. (2017), I also see autistic researchers

(including myself) as uniquely qualified to conduct research around autism due to our personal

knowledge of autism, capacity for less stigmatizing views about autism, and tendency to critique

(often harmful) assumptions about autism. Further, I draw on Bertilsdotter-Rosqvist et al. (2023)

who also speak to how autistic individuals have valuable

intersubjective knowledge about many aspects of autistic experience, including those that

come from being labelled as autistic: what it is like to be positioned as cognitively,

socially and emotionally “other”, what it is like to be the recipient of care. This means

identifying questions that may be overlooked by non-autistic researchers, as well as

providing knowledge about multiple factors that support autistic or human flourishing.

(10)

In positioning autistic people as experts, however, I also ensured to read the viewpoints shared

by bloggers with an openness to differing perspectives, even those in opposition to the paradigms

that this project operates under (e.g. pathologizing viewpoints about autism and gender

essentialist views about autism).

Sample

The final sample for this study includes seven bloggers. In order to familiarize the reader

with each of these bloggers, I will provide a brief biography of each one. For the bloggers found

through the snowball method, I will indicate which blogger referenced, cited, or linked to their

work and any other relevant details related to this link. Since all bloggers have shared a first

name in their posts, but not all have shared a last name, I refer to the bloggers by their first

names within the subsequent sections of the text for consistency and clarity (except for in

citations).

The choice to include the names of and publicly shared personal details about bloggers

was made with the knowledge that each of these bloggers makes public-facing content and

already has a significant public platform (through social/online media, advocacy efforts, or both),

meaning that there is no expectation of privacy in relation to these blog posts. However, when

comments left on blog posts by individuals other than the bloggers are referenced within this

paper, commenters are not named or directly quoted to respect the fact that they may not have

expected their words to be read on a large scale or outside of the context in which they originally

shared them.

TABLE 1. Information about the bloggers included in the study

Blog Name

Blogger

Host Website

Gender

Identity

(Self-Describe

d)

Age at

Diagnosis

Year of

Diagnosis

PurpleElla

Ella Tabb

YouTube

Non-binary

(they/them)

36

2015

Just Being

Me…Who

Needs

‘Normalcy’

Anyway?

Mor�nike

Giwa Onaiwu

Personal

website

Non-binary

woman

(she/they)

31

Unclear

Autistic,

Typing

Jules Edwards

Facebook

No specific

label

(she/they)

32

Unclear

The Punk

Rock Autistic

Dani

Personal

website

Non-binary,

gender queer,

gender

non-conformin

g, autigender,

transgender

(they/them)

27

Approx. 2015

Yo Samdy

Sam

Samantha

Stein

YouTube

(Cisgender)

woman

(she/her)

33

2019

Look Me in

the Eye

John Elder

Robison

Blogger

(Cisgender)

man (he/him)

40

Late 1990s

The Autism

Cafe

Eileen Lamb

Personal

website

(Cisgender)

woman

(she/her)

26

Approx

2014-2015

Ella Tabb (Purple Ella)

Ella Tabb (they/them), also known as Purple Ella, is a white non-binary blogger from the

United Kingdom who has been posting on YouTube since 2016. Their first post was a video blog

(vlog) about their experiences being diagnosed with autism at age 36 (in 2015) after their child

was diagnosed. Their video blogs focus on their experiences as a non-binary autistic person with

ADHD and Ehlers-Danlos Syndrome, parenting autistic and transgender children, and advice for

autistic adults (especially women and non-binary people). While they identified as a cisgender

woman at the beginning of their blogging career, Tabb came out as non-binary on YouTube in

2021. As of late June 2023, Tabb has 59.6 thousand subscribers on YouTube (Tabb n.d.). They

are also active and popular on other social media sites like TikTok and LinkedIn, but this study

only focuses on their video blog.

Mor�nike Giwa Onaiwu (Just Being Me…Who Needs ‘Normalcy’ Anyway?)

Mor�nike Giwa Onaiwu (she/they), whose blog is titled Just Being Me…Who Needs

‘Normalcy’ Anyway?, is a Black non-binary woman living in the USA who has been blogging on

her personal website since 2013. Onaiwu was diagnosed with autism at age 31 following the

diagnosis of her child and ‘came out’ as autistic in her local community in 2014. She is active in

organizing around HIV stigma and autism acceptance, including having held positions on the

boards at the Autistic Self-Advocacy Network (ASAN) and Autistic Women & Nonbinary

Network (AWN), two prominent autistic-led advocacy groups in the United States. She also

holds a PhD in Culture and American Studies. While the number of readers on Onaiwu’s blog is

not visible, she has over seven thousand followers on Twitter as of June 2023 (Onaiwu 2023).

Jules Edwards (Autistic, Typing)

Jules Edwards (she/they), also known as Autistic, Typing, is an Indigenous blogger living

in the USA who has been posting on Facebook since 2019. She was diagnosed with autism at age

32 after previously receiving an ADHD diagnosis in childhood. On her blog, she discusses her

experience with autism, parenting autistic racialized children, anti-Indigenous racism, and

relationships between autistic adults and parents of autistic children online. In 2023, Edwards

released a book with Meghan Ashburn titled I Will Die on This Hill. As of late-June 2023,

Edwards has 42 thousand followers on Facebook (Edwards n.d.).

Dani (The Punk Rock Autistic)

Dani (they/them), who goes by The Punk Rock Autistic on various platforms, is a white

autistic blogger living in the USA who received an autism diagnosis at age 27 (around 2015)

following (accurate) childhood diagnoses of ADHD and Sensory Processing Disorder, as well as

other unnamed inaccurate psychiatric diagnoses. Dani has used a number of terms to describe

their gender, including non-binary, gender queer, gender non-conforming, autigender, and

transgender. They have been blogging on their personal website since 2022 and posting on

Facebook under the name The Punk Rock Autistic since 2020. In addition to their current work

in blogging, advocacy, and consulting, they have a background in disability direct support,

including with autistic people, which originally lead them to considering that they could be

autistic. While the number of readers on their blog is not visible, Dani has 40 thousand followers

on their Facebook page as of June 2023 (Dani n.d.). While their Facebook page is both popular

and posted on more frequently, it was excluded from this study as their blog features longer-form

content that discusses late diagnosis in more detail.

Samantha Stein (Yo Samdy Sam)

Samantha Stein (she/her), who uses the name Yo Samdy Sam on YouTube, is a white

cisgender female blogger who grew up in the UK and now lives in The Netherlands. Stein

creates video blogs on YouTube about her experiences with late autism diagnosis and autistic

motherhood, as well as information about health and executive function geared towards

neurodivergent people. She posted her first video blog in 2019 after receiving an autism

diagnosis at age 33 in 2019. In 2022, she released a workbook titled So You Think You’re

Autistic. Stein was added to the sample as a result of her appearance in two video blogs posted

on Purple Ella’s page. As of June 2023, Stein has 167 thousand subscribers on her YouTube page

(Stein n.d.).

John Elder Robison (Look Me in the Eye)

John Elder Robison (he/him) is a white cisgender man who is well-known for his

memoirs about his experiences growing up with undiagnosed autism, most notably Look Me in

the Eye, which was published in 2007 and shares a name with his blog. Robison was diagnosed

at age 40 (in the late 1990s) and has been blogging since 2007. Topics on his blog include

growing up autistic, supporting autistic individuals in the workplace, autistic advocacy, and

autism-related science. Robison formerly served on the treatment and advisory boards of Autism

Speaks (see also Robison 2020). John Elder Robison was included in the sample as he was

quoted in a Today article shared on Mor�nike Giwa Onaiwu’s blog (Onaiwu 2021; Coffey 2021).

While there is no way to know how many people read Robison’s blog, as of June 2023, his

Twitter page has 12.4 thousand followers (Robison 2023) and his Facebook page has 31

thousand followers (Robison n.d.).

Eileen Lamb (The Autism Cafe)

Eileen Lamb (she/her) is a white cisgender woman who has been posting on her blog The

Autism Cafe since 2016. She received an autism diagnosis at age 26 following the diagnosis of

her eldest son. Lamb’s blog largely focuses on parenting her son who she labels as having

“severe” and “profound” autism, though she also writes more broadly about parenting autistic

children, being an autistic parent, and tensions between autistic adults and parents of autistic

children. As of June 2023, Lamb works as Autism Speaks’ Director of Social Media and

Influencer Marketing and hosts a podcast for the organization titled Adulting on the Spectrum.

Lamb was added to the sample based on posts on Autistic, Typing critiquing her blog as well as

her inclusion in the aforementioned Today article. While Lamb’s blog does not include a reader

count, as of June 2023, she has 181 thousand followers on Instagram (Lamb n.d.).

Thematic Analysis

In total, 25 blog posts (ten video blogs and sixteen text blogs) met the research criteria

and were included in the overall analysis. The distribution of number of blog posts analyzed per

blogger is detailed in the following chart:

TABLE 2. Number of included posts per blogger

Blogger

Number of Posts Analyzed

Ella Tabb

4

Mor�nike Giwa Onaiwu 3

Jules Edwards

3

Dani

2

Samantha Stein

6

John Elder Robison

2

Eileen Lamb

6

Other blog posts outside of this count are referenced, quoted, or briefly analyzed in

portions of this paper, but were not included in the close analysis described below.

All blog posts were closely read and coded in the Dedoose software three or more times

for attitudes toward gender, attitudes toward late diagnosis, and understandings of connection (or

lack thereof) between gender and late diagnosis. After initial coding, all codes were checked for

relevance and possible repetition, with a number of codes being merged for having identical or

nearly identical meanings. These codes were then grouped into four prevailing themes, which I

labeled as such: gender leads to late diagnosis (because of inherent/biological factors), gender

leads to late diagnosis (because of social factors), absence of discussion of gender, and critique

of gender presentation labels.

Gender leads to late diagnosis (because of inherent/biological factors)

Three of the bloggers (Eileen, Ella, and Samantha) saw their personal late diagnoses, as

well as the late diagnosis of women and/or people assigned female at birth in general, as at least

partially being caused by inherent differences in how autism presents in males and females. In

one post, Eileen stated: “I often get asked why I was diagnosed with autism so late in life, and

why it wasn’t caught when I was a child. There are two main reasons. [...] The second reason is

that I’m a girl. Indeed, autism in girls is harder to spot” (Lamb 2018b).

Notably, all three of the bloggers who saw gender differences as inherent or biological

explicitly referred to a ‘female presentation’ or ‘female type’ of autism. Ella seemed more

skeptical about this label being inherently female, referring to it as the “quieter, sometimes

labelled as female, presentation of autism” (Tabb 2018). These bloggers also often described

unique ‘female autism’ traits that are similar to those listed in descriptions of the Female Autism

Phenotype. This can be seen most notably in some bloggers’ specific posts about the topic,

namely Eileen’s “Autism in Girls: 5 Reasons Why It’s Different” (Lamb 2018b) and Samantha’s

“Autism Symptoms in GIRLS” (Stein 2019c). It should be noted that Samantha included a

disclaimer stating that “not all autistic women have these traits and there are many autistic boys

and men who do have them” (Stein 2019c), but the video blog was still focused on explaining

how autism ‘typically’ presents in girls and how this may differ from both behaviours seen in

allistic (non-autistic) girls and behaviours seen in autistic boys.

The most popular of these examples was that girls are better at masking/camouflaging

than boys (or simply do it more often), a view that was shared by all three of these bloggers. In

some cases, this was accompanied by the notion that girls are more inclined to try to ‘fit in’ or be

successful socially than boys. For example, Eileen suggested that “girls are more likely to learn

how to hide their symptoms. They’re better at copying social behavior to fit in” (Lamb 2018b)

but did not provide any source to back up this claim. Eileen also suggested in her post “5

Reasons Why People Might Not Get an Autism Diagnosis Until Adulthood” (2017c) that

masking played a key role in delaying her diagnosis, saying that “people with high-functioning

autism can learn to adapt and fit in. For instance, I try hard with my social interactions using

things I’ve learned over time. On most days, I appear normal” (Lamb). Samantha also discussed

her experience with masking at length, sharing:

At the age of about 18 or so I took it upon myself to start masking to blend in and I did

this completely unconsciously because I didn't know there was anything to blend in with,

but I always knew that I was different. I just thought that there was just something wrong

with me. (Stein 2019a)

The idea that girls are more prone to, better at, or more interested in masking is a view also

frequently seen in clinical research about the Female Autism Phenotype (see Hull, Petrides, and

Mandy 2020, 309), suggesting that these bloggers may have drawn on some clinical research (or

vice versa).

These three bloggers also discussed autistic girls having more ‘normal’ or ‘mainstream’

interests compared to boys and particularly cited this as a reason that autistic girls may not be

seen as particularly different from their peers (Lamb 2018b; Stein 2019c). In one video blog,

Samantha discussed how

From the outside, a girl who liked the Spice Girls or Friends, especially in the 90s when

culture was so much more consolidated - was so mainstream, so normal, that I actually

felt a bit silly talking about them in my assessment. Autistic women might not have

special interests that raise eyebrows - they might, but they might not, but what marks us

as different is the intensity of the interest and the level of knowledge on the subject.

(Stein 2019c)

Other ‘female autism’ traits discussed by bloggers were autistic girls being more passive and/or

shy than their male counterparts, who were seen as more aggressive or ‘disruptive’ (Lamb 2018;

Stein 2019c; Tabb 2021a) and having less repetitive behaviours (Lamb 2018).

All three of these bloggers suggested that the current diagnostic criteria and tests used by

clinicals are based around the ‘male presentation’ of autism, therefore making it more difficult

for girls and women to be diagnosed (Stein 2019c; Tabb 2020; Lamb 2017c; 2018b). Two of the

bloggers were explicitly supportive of efforts to combat this with revised or specialized

diagnostic processes. In her post “Autism in Girls: 5 Reasons Why It’s Different,” Eileen said

that her “hope is that in the future there will be different autism scales used to diagnose autism in

girls and boys, or some other metric to account for these inherent differences” (Lamb 2018b).

Ella also explicitly supported the use of the Diagnostic Interview for Social and Communication

Disorders (DISCO) as a more accurate diagnostic tool for women and girls and promoted the

work in this area by the Lorna Wing Centre for Autism (Tabb 2020).

Two of the bloggers (Ella and Samantha) changed their opinions over time, later

critiquing the idea of an inherently female presentation of autism (Tabb 2021; Stein 2021).

However, one blogger (Eileen) has not expressed any reservations about the idea of a female

presentation of autism. However, unlike Ella and Samantha, she has not written about gender and

autism on her blog since 2018, meaning that it is possible that she has quietly changed her views

and not addressed them on her blog. In fact, no posts published after 2020 from any of the

suggested that there was such a thing as a unique ‘female’ presentation of autism.

Gender leads to late diagnosis (because of social factors)

Two of the bloggers who spoke about gender and late diagnosis (Ella and Samantha)

began to suggest later on in their blogging careers gender leads to late diagnosis because of

social factors rather than inherent sex/gender differences in autism. More specifically, they

discussed how different expectations placed on autistic boys and girls led them to behave

differently. In their video blog “Autistic Girls Are We Gender Stereotyping Autism?” (2021) Ella

suggested that:

Perhaps it's to do with presentation. Females are typically socialized and treated

differently to men. Expectations of girls lead them to mask. [...] We are expected to

demonstrate behaviours like gentleness, patience, and complex social skills that perhaps

aren't expected of our male peers. Quirks are less tolerated if you're a woman. I've always

felt that it might have been easier to have been a quirky, socially awkward man. (Tabb

2021a)

Samantha echoed this line of thinking in her post “Autism in Girls - I Was Wrong” (2021), which

was intended to be a loose collaboration with Ella’s video.1 In the video, she asked “Why would

autism present differently enough in different genders to create such an imbalance in the first

place? There is something to be said for sure about the way that different genders are socialized

within society” (Stein 2021). In discussing the social expectations on girls, the two bloggers

acknowledged that certain traits (e.g. masking, trying harder to fit in) do lead girls and women to

be diagnosed later, but they argued that these traits are not inherent to females and are instead

developed as a result of expectations put on them.

1 Ella and Samantha each posted their own videos unpacking the “female autism” label in mid-March of 2021 as an

attempt to jointly open up a conversation about the topic in the online autism community without having to

coordinate a single collaborative video, which they described as much more logistically difficult.

Some bloggers also discussed how gender and/or sex could influence what disabilities

doctors considered or diagnosed in certain individuals. In their post “Intersectionality and

Neurodiversity,” Dani stated that “diagnosis is often biased, and social constructs of gender are a

frequent denominator in our understanding of how disabilities manifest in people” (Dani 2022a).

Samantha and Ella described experiences being diagnosed with or identifying with a variety of

other labels in their videos, including Highly Sensitive Person (Stein 2019c), Borderline

Personality Disorder (Stein 2019c), Depression (Stein 2019c; Tabb 2016), and Bipolar Disorder

(Tabb 2016). Samantha suggested that these misdiagnoses could be attributed to doctors seeing

autism as a ‘male condition,’ therefore attributing “women’s traits to and symptoms to other

things” (Stein 2021). This bias was perhaps also illustrated in the experiences of studied bloggers

(all of whom were Assigned Female at Birth) who had to advocate for their own diagnoses. In a

post advocating for self-diagnosis, Jules, who received accurate ADHD and Narcolepsy

diagnoses earlier in life, recalled only being considered for an autism diagnosis when she “went

to a provider with [a] spreadsheet and said ‘please evaluate me for autism’” (Edwards 2022).

While she did not specifically attribute this to her gender or sex, she did share later in the same

post that it was “written for BIPOC women and nonbinary people who are constantly harmed

and marginalized within the medical and psychiatric industries” (Edwards 2022), perhaps

suggesting that she saw her experiences of having to work for this diagnosis as a form of this

racial and gendered marginalization.

Many of the bloggers assigned female at birth (namely Samantha, Mor�nike, Ella, and

Eileen) also discussed similar experiences of bias in day-to-day interactions, such as being told

they ‘do not look autistic’. For example, Mor�nike described being asked “You? Are you

SURE?” (Onaiwu 2014) and Ella recalled being told “oh you can’t tell” (Tabb 2018). Eileen

specifically connected this experience to gender, saying that she looked “like a regular

28-year-old woman” (Lamb 2018a). Similar experiences were not described by the bloggers who

were assigned male at birth.

Media representation of autistic people and stereotypes were often blamed for people not

being able to see girls and women as autistic. A number of bloggers invoked a similar male

figure who was seen as the face of autism in pop culture. This figure was described as “a white

cisgender male” (Onaiwu 2018), a “stereotypical 11 year-old autistic boy banging his head

against a wall” (Stein 2019a), a “white male” (Dani 2022a), a “stereotypical presentation -

mostly in boys - of someone who loves trains, numbers, timetables, does weird repetitive

movements like hitting their head or flapping their hands, has poor social skills and is generally

kind of a loner” (Stein 2019c), and “Spock-autism” (Lamb 2020b). Some bloggers suggested that

it was not just others who were unable to see them as autistic due to media and popular culture

representation, but even themselves (Lamb 2020a).

Overall, the belief that social factors caused later diagnosis in women, girls, and other

groups seemed to be the most common conviction held by bloggers, especially those who were

assigned female at birth and white. Even those bloggers who did not explicitly hold this view

discussed experiences that could be seen as in line with it, with the exception of one blogger

(John), who did not discuss gender at all, as will be detailed in the following section.

Absence of discussion of gender

Some of the bloggers spoke very little or not at all about gender in relation to their

personal experiences (particularly their late diagnoses). While the white subjects who were

assigned female at birth seemed eager to discuss the role of gender in their experiences, and all

of them even dedicated at least one full blog post to this topic, those outside of this group did not

demonstrate the same commitment to a gendered analysis.

This was particularly true with the two bloggers who were assigned male at birth. While

Dani talked about gender leading to late diagnosis in general, they did not discuss how their

gender impacted their diagnosis or autistic self-discovery experience (Dani 2022b). Even in their

post about intersectionality, the discussion of their own personal experience with late diagnosis

focused on how it impacted their career in disability direct support and did not factor in how

gender or other identities impacted their diagnosis. Similarly, while John had some guest posts

on his blog written by an autistic woman about her experiences (McCarthy 2009a; 2009b), he

never personally talked about gender and autism, even outside of the context of late diagnosis.

One important note here is that John did not have any particular posts on his blog that recounted

a full ‘diagnosis story’ as some of the other bloggers did, perhaps because he had previously

written a memoir partially about this experience. That being said, the two posts analyzed for this

research, “Why Are We Autistic?” and “Twelve Years of Writing on Autism,” did include

sections of John discussing his diagnosis experience and how he felt about it in the following

years.

Interestingly, there were also differences in how the racialized bloggers who were

assigned female at birth discussed gender compared to their white counterparts. Jules only once

discussed the role that gender played in the diagnostic process, specifically in reference to

racialized women and non-binary people, saying that her followers should not “rely on a

diagnosis in order to understand yourself and how to live your best life. This is especially written

for BIPOC women and nonbinary people who are constantly harmed and marginalized within the

medical and psychiatric industries” (Edwards 2022). Similarly, across Mor�nike’s blog, I found

no references to whether gender plays a role in late diagnosis. She did, however, speak about the

erasure of racialized (and specifically Black) autistic individuals in discussions about autism (see

Onaiwu 2021). While it is difficult to come to any conclusions based on two bloggers and

generalizations should not be made, this trend may suggest that some racialized autistic people

see other factors (e.g. race and ethnicity) as playing a larger role in late diagnosis (and overall

autistic experience) than gender.

Critique of gender presentation labels

In more recent posts, some of the bloggers criticized using gendered subtypes or profiles

of autism to explain gender disparities in diagnosis. In 2021, Ella and Samantha embarked on an

informal collaboration in which they each made a video blog about the problems with such a

category. This was particularly a shift for Samantha, who had previously discussed the Female

Autism Phenotype within her videos and suggested that it was the reason that she was able to see

herself as autistic (Stein 2019c). However, though Ella had previously shown less enthusiasm

about the female autism profile than Samantha, it was still the first time that they publicly and

explicitly critiqued the idea of a unique female autism profile. Drawing on their personal

experiences, as well as interactions they have had with autistic children and adults, Samantha and

Ella provided a number of arguments against separating autism presentations by gender and/or

sex.

In line with recent trends in Critical Autism Studies (see also Price 2022; Watts 2019),

Ella and Samantha argued that the traits associated with female autism are not inherently female.

In her video blog, Samantha explained how she had “talked to men who were diagnosed in their

30s, or 40s even, who said [...] things like ‘oh well I have the female type of autism’” (Stein

2021). A similar experience can be read in Dani’s blog “My Journey of Autistic Self-Discovery”

(2022b). Although they were assigned male at birth and do not identify as female, Dani received

inaccurate diagnoses instead of autism in childhood and, in their own words, were “a fairly calm

kid,” and “friendly with strangers and [...] always so happy to meet new people” (Dani 2022b) –

traits that often appear on ‘female autism’ checklists. However, neither of the bloggers assigned

male at birth in this sample explicitly discussed relating to the ‘female autism’ presentation.

Similarly, Ella and Samantha discussed how some people who are not assigned male at

birth and do not identify as male relate to ‘male autism’ traits. Discussing the topic in general,

Samantha mentioned how she had “talked to autistic women who said that they related more to

the male type” (Stein 2021). Drawing on their own experience, Ella shared: “I wondered whether

I presented more like an autistic male. I didn’t feel like I was presenting the way the lists

described” (Tabb 2021a). These individuals relating more to a ‘male presentation’ of autism

suggests that there are other factors at play causing a late diagnosis than actual gender

differences.

The bloggers also explained how reducing autism to ‘male’ and ‘female’ presentations

can exclude trans and non-binary people. Ella discussed how their transgender daughter did not

really fit either presentation entirely, saying that “in fact in some ways her autism did fit the

[female] stereotype. She is bookish, quiet, and she tends to hide her anxiety, but she also has

some really typically described male” traits (Tabb 2021a). They also pointed out the absurdity of

suggesting that autism traits are inherently gendered, saying “my autistic child came out as trans

and changed her gender presentation. Did her autism change to fit her gender presentation?

Obviously it didn't, but she's still an autistic girl” (Tabb 2021a). Samantha also discussed how the

idea of ‘female autism’ could be gender essentialist and exclusionary, noting that:

Telling a trans man that he has female autism may provoke gender dysphoria and still

doesn't provide us any useful information other than perhaps he has a similar autistic

profile to other autistics who happen to have been socialized as girls growing up. (Stein

2021)

Despite not believing in gendered presentations of autism, Ella did not doubt that autism could

present in diverse ways, saying “it's not that I'm not validating those with what I would prefer to

call a quiet or more camouflaged presentation of autism, it's that I'm not sure how helpful it is to

label it as a gender difference” (Tabb 2021). Unlike Eileen, who suggested that there should be

specific diagnostic instruments or tools put in place to evaluate girls for autism, Ella suggested

that everyone should be evaluated with an understanding of the diversity of autistic people:

Rather than creating a new gendered autism presentation and teaching people how to

diagnose and support it, we could overhaul the entire system. Let's treat every autistic

person as an individual with an individual presentation of traits and an individual set of

needs. (Tabb 2021a)

Other than Ella and Samantha, no other bloggers explicitly critiqued gendered labels for autism

presentations. However, Mor�nike critiqued the idea of autism presenting differently in different

races, saying “I have a HUGE problem with claims that autism ‘presents differently’ in people

merely because their skin has more melanin. I think it’s more about how autism is PERCEIVED

in such individuals than a drastic ‘difference’ in presentation” (Onaiwu 2018). While this does

not indicate any specific opinions about gender, it shows a rejection of the idea that autism is

inherently different in people with different socially constructed and intersectionally situated

identities.

Critical Discourse Analysis

For the Critical Discourse Analysis portion, all posts were analyzed for reference to and

ideas in line with the attitudes on the initial list (see Appendix A) as well as any other discourses

that emerged. Of the original list, all discourses were explicitly named or continuously reflected

in the posts of two or more bloggers, except for Neuroqueer, which was not referenced in any

blogs. While Samantha did briefly discuss how autistic people often “don't really feel the need to

conform to society's expectations of [them], especially with regard to gender or sexuality” (Stein

2019e), there were no explicit mentions of or deep engagements with neuroqueer theory, leading

me to exclude it from the final discourse list. That being said, the bloggers may have referenced

it in posts that were not included in the close analysis, as the topic of the intersection of autism

and gender identity/queerness came up across other posts that were excluded from the sample.

For example, Ella had a video blog titled “Autism And Gender Identity” (Tabb 2021b) and Dani

had a Facebook post about identifying with the label ‘autigender’2 (Dani 2021), but these posts

were excluded from the analysis as they did not discuss late diagnosis.

Following the Critical Discourse Analysis, the discourse list contained nine root entries, a

number of which also have child codes (see Appendix B).

The vast majority of bloggers in the sample (six out of seven) were explicitly aligned

with the neurodiversity paradigm (Ella, Mor�nike, Jules, Dani, Sam, and John). Multiple of these

bloggers explicitly rejected medicalizing/pathologizing views of autism (Robison 2018a; Stein

2019a; Tabb 2018) and explicitly saw autism as something positive to be proud of (Dani 2022b;

Onaiwu 2014; Robison 2018b). In line with the neurodiversity paradigm, these bloggers also

criticized functioning labels and the idea of mild/severe autism (Stein 2019d), were sympathetic

2 According to Munday (2021), the label ‘autigender’ refers to an experience of gender “which can only be

understood in the context of being Autistic.”

to or supportive of self-diagnosis (Stein 2019e; Edwards 2022), and drew parallels between

autism and other marginalized identities (Onaiwu 2014; Stein 2019a). Relatedly, Dani and

Samantha shared ideas that were similar to the social model of disability, claiming that it is an

unaccommodating world that disables autistic people and not their autism itself. In their post

“My Journey of Autistic Self-Discovery,” Dani shared:

Sure, I have my own struggles and challenges – but these aren’t because I am autistic;

they arise because of the external systems in place that are not designed for

neurodivergent people. They are steeped in neurotypical social standards, ableism,

expectations, and judgment that can prevent forward motion when there is also a lack of

support. When I am in an environment that is accommodating to me, or if I am allowed to

create my own environment; I thrive. (Dani 2022b)

The majority of bloggers saw autistic people as autism experts and preferred to share resources

and media created by autistic people with their followers. For example, in the description of her

video blog “Could YOU be autistic? (and not know)” (Stein 2019e), Samantha linked an early

version of Samantha Craft’s autism traits checklist, a resource created by and for autistic women

(Craft 2019). In another video blog, Ella shared that they “personally [...] prefer to use resources

that are contributed to by autistic people that are using the kinds of language that we prefer to

use” (Tabb 2018). Relatedly, John expressed feeling that he had the most responsibility to his

“community, which is #ActuallyAutistic people” (Robison 2018b) when writing about autism.

There was also a strong trend in these late-diagnosed individuals learning about themselves

being autistic from their autistic communities or resources made by autistic people, rather than

through medical ‘experts’, even if they later sought out an official diagnosis (Dani 2022b; Stein

2019c; 2019e).

Even as the majority of bloggers saw autistic people as autism experts, some of these

bloggers still implicitly or explicitly reaffirmed that medical professionals are autism experts. In

multiple of her video blogs, Samantha shared a disclaimer that she was not a medical

professional ahead of providing information about autism (Stein 2019c; 2019e). In addition,

though these bloggers often supported self-diagnosis, they often also shared that they personally

felt they needed a medical evaluation or were relieved to have the ‘stamp of approval’ of a

professional diagnosis (Tabb 2016; Dani 2022b; Stein 2019a).

Some bloggers tackled the question of what causes autism and why there has been an

increase in autism diagnoses in recent years. None of the bloggers in this sample believed that a

child could develop autism after birth and two of the bloggers (John and Mor�nike) explicitly

stated that they believe autism is hereditary (Robison 2018a; Onaiwu 2018). John and Mor�nike

also shared beliefs that autism diagnoses were increasing due to increased awareness rather than

an uptick in the number of autistic people, with John stating: “autism isn’t something that

happened one day. It was always here. It’s awareness that’s new” (Robison 2018a). Mor�nike

also explicitly critiqued the idea of an ‘autism epidemic,’ which suggests that too many people

are being born autistic due to various factors (Onaiwu 2018).

One blogger, Eileen Lamb, shared sentiments that were more in line with the pathology

paradigm. Unlike the other bloggers, she frequently used functioning labels and similar

descriptors, labelling how autism manifests in individuals as mild, severe, and profound, among

other things. Most notably, quotes from her blog were coded for “severe autism” six times.

Eileen often used “profound” and “severe” autism as labels to describe her son who is non-verbal

and autistic. Furthermore, across her blog, she has argued in support of Applied Behavioural

Analysis (ABA) therapy (Lamb 2017b; 2023), an autism therapy critiqued by self-advocates and

particularly those who have been subjected to it for conditioning autistic people “to look and

behave like someone they’re not – conforming to social standards of behaviour rather than

actually helping them with tools to exist in day-to-day living” (Durling 2022).

Eileen also argued that autism is a “disability. Not a cool feature. Not a trend” (Lamb

2017c) and criticized #actuallyautistic (Lamb 2018a), a social media movement to give autistic

individuals space on social media not dominated by non-autistic caregivers (see Eartharcher

2017). Rather than only seeing autistic individuals as experts on autism, Eileen believed:

If you’re a neurotypical parent of an autistic child, I don’t think you should let anybody

tell you what to say or not say about your child, or that your experience is somehow not

relevant or valid. You have the right to share your kid’s journey with autism even if

you’re not on the spectrum. Your experience and point of view is just as important.

(Lamb 2017a)

While she typically relied on a pathologized view of autism, Eileen did critique the DSM-V

twice, stating that its criteria were based on a ‘male presentation’ of autism (Lamb 2017b; Lamb

2018b). That being said, she still saw medical professionals as experts in autism, sharing that she

“didn’t believe in self-diagnosis” and was not willing to consider herself as autistic without a

thorough assessment (Lamb 2020).

Extreme male brain theory was referenced by two bloggers, Samantha and Ella, both of

whom critiqued the theory. Ella explicitly disagreed with Baron Cohen’s ideas, saying that they

“don't think the difference in gender diagnostic rates is explained by an extremely male brain”

(Tabb 2021). Samantha cited extreme male brain theory as a reason that she was unable to see

herself as autistic despite having a psychology degree, saying that Baron Cohen has

been such an influence on autism research that when I did my psychology degree, which

was 15 plus years ago now, I didn't recognize autism in myself because I didn't see my

brain as being particularly male. (Stein 2021)

Despite rejecting the gender essentialist ideas of extreme male brain theory, a number of

bloggers implicitly or explicitly agreed with the ideas of the Female Autism Phenotype, at least

for part of their blogging career. As discussed earlier, Eileen, Ella, and Samantha all shared

views that aligned with the Female Autism Phenotype. However, Samantha was the only one to

use the term ‘Female Autism Phenotype’ explicitly in her blog and she only used this wording in

a context where she was sharing that she no longer believed in it (Stein 2021). Those who had

encountered ideas similar to the Female Autism Phenotype described learning about them from

fellow autistic community members rather than medical professionals or autism researchers,

suggesting that the idea of a unique female autism profile may have circulated initially and/or

independently in autistic communities. Both Ella and Samantha described coming across media

detailing lists of signs of female autism developed by autistic women themselves (Tabb 2021;

Stein 2019c; 2019d). Interestingly, Eileen was the only blogger in the sample who continuously

held the belief that there are inherent differences between the way that autism presents in boys

and girls.

While some of the bloggers saw certain categories of autism (high/low-functioning,

mild/severe, male/female) as being socially constructed, no bloggers suggested that autism itself

could be socially constructed. In fact, some bloggers referred to autism as an inherent trait that

existed prior to having a name. For example, John suggested in a blog that “autism isn’t

something that happened one day. It was always here. It’s awareness that’s new” (Robison

2018a). However, some bloggers did recognize how the category of who could be considered

autistic has changed and expanded over time, perhaps suggesting an understanding of how the

category of autism is constantly being rewritten and shaped by medical professionals, autistic

individuals, and other stakeholders. For example, Samantha acknowledged how while studying

psychology “autism was taught to [her] as a male condition” (Stein 2019c). Ella also discussed

how new diagnostic tools are being introduced for autism which may cause certain individuals

who would not previously to receive a diagnosis, thus changing the parameters for who qualifies

for an autism diagnosis (Tabb 2020).

The homogeneity of discourses present in autie-blogs may suggest that the majority of

autistic adults subscribe to similar viewpoints around autism and that the one blogger who veered

from these viewpoints (Eileen) is an outlier. However, this may also indicate researcher bias as I

personally subscribe to the neurodiversity paradigm and generated a sample based on four

bloggers who I personally see as prominent in the late-diagnosed community. There may be

other late-diagnosed bloggers who are prominent in their own communities and share more

similar views to Eileen but were missed by this sampling method.

It is also worth noting that compared to the other bloggers, Eileen’s blog is much more

focused on parenting an autistic child than the other bloggers studied. While a majority of the

sample (Ella, John, Mor�nike, Jules) discuss parenting autistic children in their blogs, they

typically present themselves as bloggers who generally discuss autism and their own experiences

rather than parenting bloggers. On the contrary, Eileen describes her blog as a space where she

“shares the ups and downs of raising a severely autistic child while being on the autism spectrum

herself” (Lamb n.d). As such, Eileen’s perspectives and affiliations may be shaped by her heavy

involvement in the autism parenting blog community, in which views contrary to those shared by

the autistic blogger community may be common. These affiliations may not simply be influenced

by the community that Eileen is situated in or learns from, but also the audience that she is

speaking to. Looking at a number of posts on Eileen’s blog, including those explicitly about her

experience with autism, the majority of commenters seem to be non-autistic parents, often

referencing their autistic child (or grandchild) or a child in their life who they suspect is autistic

but does not have a diagnosis (Lamb 2017a; 2018b). As such, Eileen may use specific language

or share specific sentiments to appeal to or create community with non-autistic parents of autistic

children, who may share different opinions that autistic self-advocates.

Discussion

Neurodiversity Paradigm, Pathology Paradigm, and Views on Autism and Gender

Due to the fact that the majority (six out of seven) bloggers held very similar views in

relation to autism, it is difficult to draw conclusions about whether affiliation with certain

discourses shapes one’s beliefs about gender and late-diagnosis. However, as stated earlier in this

paper, the one blogger in the sample (Eileen) whose views aligned closely with the pathology

paradigm (e.g. using functioning labels, seeing autism as a negative trait, and supporting ABA

therapy) was also the blogger who subscribed the most to gender roles in autism, as she

suggested that it presented differently in boys and girls due to inherent sex differences (e.g.

seeing girls as naturally more passive while boys are naturally more aggressive, believing autistic

girls try harder to fit in, and suggesting that autistic boys have more repetitive behaviours).

Reflecting on this specific example, could we view the Female Autism Phenotype (or

similar understandings of gender differences in autism) as a form of pathologization in itself. In

many ways, the views expressed by Eileen (regarding both ABA and gender roles) are reflective

of the entangled history of cis/heteronormativity, strict gender roles, and neuronormativity. In

recent years, a number of autistic self-advocates and disability theorists have compared ABA

therapies to the forms of ‘conversion therapy’ or ‘reparative therapy’ used to force queer subjects

to conform to hetero- and cis-normative ideals (Sequenzia 2016; Autistic Collaboration 2021;

Yergeau 2018, 28-29). These critics have argued that like ‘reparative therapy’ for queer and trans

individuals, “ABA treats [autistic people] as if [they] are broken, as if [they] need to be repaired”

(Sequenzia 2016) for an identity that they are born with and unable to change. While these critics

recognize that these ‘treatments’ are not identical, the similarities between them have caused

them to call for government bans of ABA therapy, particularly after said governments ban

anti-LGBTQ+ ‘conversion’ therapies (Sequenzia 2016; Autistic Collaboration 2021).

This comparison is not a coincidence: there is a strong relationship embedded in the

history and development of ABA for autistic individuals and ‘reparative’ or ‘conversion’

therapies for queer individuals. University of California, Los Angeles psychologist Ole Ivar

Lovaas is often considered a ‘trailblazer’ in the ‘treatment’ of autistic children through ABA (see

also Gibson and Douglas 2018, 3; Roscigno 2023, 11-12) due to his early work in applying

“operant learning theory to treat ‘disturbed’ children, beginning early to focus on those with

autism diagnoses” (Gibson and Douglas 2018, 9). However, he also developed and used similar

behaviourist approaches for the ‘treatment’ of both autistic and gender non-conforming children

(Pyne 2021, 351; Gibson and Douglas 2018, 3). Lovaas, alongside then-graduate student George

Rekers, developed the Feminine Boy Project in the 1970s, which employed similar behaviourist

interventions “with the goal of increasing ‘masculine’ behavior, play and activities [...] and

decreasing ‘feminine’ behaviors, play and activities” (Gibson and Douglas 2018, 3) in young

boys who were perceived as being too feminine. The ‘therapy’ delivered under this project relied

on similar techniques to both early and contemporary ABA delivered to autistic children,

including the use of rewards in response to desired behaviours, non-responsiveness to undesired

behaviours, and the training of parents (particularly mothers) to carry on therapeutic practices in

the home (Gibson and Douglas 2018, 10).

Although the field of Applied Behavioural Analysis has disassociated itself from

so-called ‘therapies’ to changed gender(ed) identities and behaviours (see Association for

Behavior Analysis International 2022), it can be argued that in our cis/heteronormative society,

the “desired behaviors” (Roscigno 2023, 1) sought by ABA practitioners are inextricably linked

to gender roles. As Nick Walker notes in Neuroqueer Heresies (2021), in a world in which

neurotypicality, heterosexuality, and cisgenderism are the dominant and desired norms,

the process by which [individuals are] pushed into the ill-fitting confines of

heteronormative gender performance and the process by which [they are] pushed into the

ill-fitting confines of neuronormative performance [... are] deeply and thoroughly

entwined with one another, with no solid dividing line between them. (171)

Thus, Eileen holding views closely linked to the pathology paradigm (and in particular, being a

proponent of ABA therapy) while also being the blogger who most strongly believes in inherent

sex differences in autism can be read as a symptom of a larger entanglement of

hetero/cisnormativity and neuronormativity. While Eileen does not chastise certain gendered

behaviours in her blog posts, she does discuss autistic girls’ experiences in a way that reinforces

essentialist gender roles. For example, in her post “Autism in Girls: 5 Reasons Why It’s

Different,” Eileen states that autistic “boys tend to be more aggressive while [autistic] girls are

more withdrawn and passive” (Lamb 2018b). She also suggests that girls have less repetitive and

restricted behaviours (2017c), have more ‘normal’ interests (2018b), and are “better at copying

social behaviours to fit in” (2018b). By suggesting that girls inherently behave in certain ways

(which is not universally true), Eileen is not describing an inherent truth but instead prescribing a

certain set of behaviours onto the category female. I think about this alongside Ian Hacking’s

(1996) notion of the ‘looping effect’, where he argues that by classifying a group, people change

and even create the people classified within that group. As I will explore further in my discussion

of the construction of the Female Autism Phenotype, I argue that those who describe a certain

type of ‘autistic female’ inherently create that person, therefore constructing a form of acceptable

female gender presentation within the category of autism.

Further, as I will explain in more depth in a subsequent section of this paper, the Female

Autism Phenotype extends the umbrella of who is considered to fall under the autism umbrella,

what their behaviours may look like, and how they can be ‘treated’. In a world in which the

dominant response to autism is pathologization (i.e. medication, therapies, entrance into the

psychological and/or psychiatric system rather than embrace and accommodation of neurological

difference), a formal diagnosis with autism can be seen as a form of medicalizing that which a

number of autistic self-advocates would argue does not require treatment or ‘fixing’ (Garcia

2021). As described by Aimee Morrison (2019),

diagnosis is [...] a primary site of the biographic mediation of disability, one in which

authorized experts translate and transform patient (or parent, or teacher) complaints into

patient histories into lists of observed and testable impairments into a coherent case file

that resolves by naming the disorder according to standardized criteria and attaching the

diagnostic label to the patient, to whom a standardized treatment regime can be applied.

(700)

As Morrison illustrates, by diagnosing a patient, the psychologist becomes able to then enact

treatments to ‘cure’ (or otherwise modify the behaviour, thoughts, or actions of) the patient, who

may have previously not been seen as in need of medical intervention. As such, the Female

Autism Phenotype can be seen as a form of pathologization in that it allows those who would not

formerly be labelled autistic to enter as a patient into the psychological or psychiatric system,

where their differences can be subdued or eliminated through ‘interventions’. I would argue that

this is particularly true when the Female Autism Phenotype is held up by those who also support

‘interventions’ like Applied Behavioural Analysis, which autistic self-advocates have argued is a

process through which

autistic people are continuously battered with compliance strategies, with imposed ways

of doing things that are not natural to us (even when our atypical way of doing things

might achieve the same goal), until we break, and lose the energy to fight for our right to

be ourselves. (Sequenzia 2016)

By arguing for “different autism scales used to diagnose autism in girls and boys, or some other

metric to account for these inherent differences” (Lamb 2018b), Eileen is therefore arguing for

further pathologization of individuals who portray so-called ‘autistic traits’.

I want to stress here that I am not suggesting Eileen is necessarily directly causing the

pathologization of autism or the enforcement of gender roles in society. In fact, Eileen explicitly

supports feminist actions on her blog (see Lamb 2018a). Rather, I argue that the sentiments she

includes in her blog posts are part of a wider project to pathologize individuals who are autistic,

gender non-conforming, or both. These viewpoints did not start or end with this particular

blogger, but are a product of a combination of long histories of neuronormativity,

cis/heteronormativity, and the use of so-called ‘therapeutic treatment’ to reinscribe societal

norms on ‘deviant’ subjects.

In the same way that there is a long and apparent connection between strict gender roles

and pathologization of neurological ‘difference’, it may also make sense that those who follow

the neurodiversity paradigm seem to care less about or even explicitly critique gender

differences. The neurodiversity paradigm relies on the notion that “the idea that there is one

‘normal’ or ‘healthy’ type of brain or mind, or one ‘right’ style of neurocognitive functioning, is

a culturally constructed fiction” (Walker 2021, 36). As such, proponents of the neurodiversity

paradigm may also be likely to question the idea that there is a ‘normal’ or ‘right’ way of

performing other identities, including gender. In fact, Samantha suggested in a blog that autistic

people often “don't really feel the need to conform to society's expectations of [them] especially

with regard to gender or sexuality” (Stein 2019e), perhaps suggesting that (at least in her

perspective) those who have embraced a way of thinking/being that subverts the norm could be

more open to rejecting other identity-based norms. This is also perhaps particularly evident in the

fact that four out of seven of the overall bloggers both identified outside of the gender binary and

embraced the neurodiversity paradigm. This is not to suggest that everyone who embraces the

neurodiversity paradigm will automatically embrace gender diversity, but rather to demonstrate

how the correlation witnessed in this study is simply unsurprising.

Shifting Viewpoints

A key finding of this study is that perceptions around the connection between sex and/or

gender and timing of (or access to) autism diagnosis among late-diagnosed autistic adult

bloggers have evolved over time. By the time this autistic blogging community emerged, the

extreme male brain theory had largely fallen out of fashion in academia and general discussions

of autism in the public sphere, with a number of critiques emerging in the 2010s (McCarthy

2019; Jack 2011; Ridley 2019). This is also reflected in the blogs, with the only mentions of it by

the studied bloggers being critical and sometimes backed up by evidence from psychological

studies (Stein 2021; Tabb 2021a).

However, a number of these bloggers still frequently discussed (and supported) gender

essentialist ideas about autism from the mid-2010s until 2020 in the form of the Female Autism

Phenotype, which relies on the assumption that there are inherent differences between male and

female brains, such as the notion that “boys tend to be more aggressive while girls are more

withdrawn and passive” (Lamb 2018b). When discussing these ideas, bloggers often suggested

that they were being recognized by the autistic community but not yet the medical system (Lamb

2018b). This resulted in some individuals calling on the medical system to make changes to how

autism is diagnosed in girls and women (Lamb 2018b). By 2021, however, some former

proponents of the female autism phenotype began to critique the ideas behind it (Stein 2021;

Tabb 2021a), and no bloggers explicitly mentioned supporting it, demonstrating yet another shift

in prominent views around gender and autism among late-diagnosed bloggers.

It is important to note that autistic bloggers did exist prior to the blogs included in the

study. In fact, the Autism Hub, perhaps the most notable congregated autism blogging

community3 to date, was founded in 2005 and operated into the early 2010s (see also Seidel

2020; Eidle 2022). The only blog from this study that was active before 2014 was that of John

Elder Robison, who did not write about gender and late diagnosis. Without further study with a

longer time frame and larger sample size, it is impossible to know whether this is because such

3 I refer to the Autism Hub as an “autism blogging community” rather than an autistic blogging community as its

membership consisted of both autistic and non-autistic individuals. The non-autistic individuals were primarily

parents of autistic children.

conversations were not prevalent at the time or whether they were simply not hosted on this

particular blog. As such, any analysis I provide of the way these conversations have evolved over

time only captures part of this broader history. Furthermore, with the rapid evolution of ideas

happening on microblogging and short-form video sites (e.g. Twitter, Instagram, and TikTok), it

is likely that conversations in segments of the autistic community have evolved past the point

captured in this particular study.

At the time that I began this study, I anticipated seeing more frequent and more recent

representations of a ‘Female Autism Phenotype’ line of thinking amongst the bloggers. As such,

I was surprised to see more diverse orientations towards the relationship between gender and late

diagnosis. I see two factors as largely creating my original impression of the current prevalence

of the female autism phenotype. Firstly, I underwent my own autism evaluation in late 2020,

which meant that I read and watched significantly more blogs about late diagnosis experiences

around this time. As such, I have been less tuned into emerging discussions critiquing the Female

Autism Phenotype as it relates to late diagnosis as I have interacted with the online autistic

community in other ways. On the other hand, these perceptions may have also been shaped by

popular content on microblogging and short-form video platforms, which I currently interact

with more often and may vary from the content seen in these longer-form blogs.

That being said, this study focused on a relatively small sample and may not necessarily

be representative of the larger autistic blogging community in which these conversations may

still be happening but simply be outside of the circles this study concentrated on. I particularly

anticipate that samples with a larger concentration of cisgender women might include more

recent and more frequent discussions of the Female Autism Phenotype.

Constructing Female Autism

Research findings provide particular insight into how autistic adults (especially women)

have co-created the category of the ‘Female Autism Phenotype’ alongside researchers in

psy-fields (psychology and psychiatry).

Bloggers within the sample generated and shared lists of ‘female autism’ traits, often

including personal examples (see Stein 2019c; Lamb 2018b), effectively creating and shaping a

new list of (informal) autism diagnostic criteria. Sometimes, these lists also have included

re-interpretations of ‘official’ autism criteria (i.e. from the DSM or ICD) which describe ways

that traits may ‘unconventionally’ manifest in some individuals, particularly women, girls, and

those assigned female at birth. For example, Samantha discussed her fixated interest in the Spice

Girls and how this was evidence of the ‘restricted interests’ described in the DSM, even though it

may have seemed like normal behaviour for an adolescent girl (Stein 2019c).

Often, bloggers have been influenced by other lists of ‘female autism traits’ developed by

autistic individuals when writing their own. For example, in a couple of her video blogs,

Samantha referenced a video by former YouTuber invisible i about autism in girls that made her

consider she might be autistic (Stein 2019c; Stein 2019d). She also linked a blog post by

Samantha Craft which detailed a list of ‘female autism traits’ in the description of one of her

video blogs (Stein 2019e; Craft 2019). As such, we can see how the construction of the category

known as ‘female autism’ has been partially constructed through a dialogue between autistic

bloggers.

By popularizing the category of ‘female autism’, I argue that these individuals have

reconstructed the category of autism itself in the popular imagination, expanding what has been

relegated to a ‘male condition’ (Dani 2022a; Stein 2021) into something experienced by those of

diverse genders (though, proponents of ‘female autism’ would argue, not in the same way). As

argued by Aimee Morrison (2019), “diagnostic categories and labels are constantly in flux:

disorders are named, appear, become associated with other diagnoses, are formed into (or split

apart from) categories, or disappear altogether” (700). This is particularly true with autism: Ian

Hacking (2009) argues that the autism “spectrum itself is a ‘moving target’ that has evolved

dramatically” due to social and cultural factors (1467). While I do not mean to suggest here that

the experiences which we call autism are not real or disabling (in fact, I personally have an

autism diagnosis that I deeply identify with), I argue that, particularly due to the lack of

definitive biological evidence for autism, the criteria of what ‘counts as’ autism is malleable and

has evolved as various stakeholders have contested it. In her booking Constructing Autism

(2005), Nadesan refers to this as a failure to “define the precise essence of autism” (9, emphasis

in original). Further, particular cultural phenomena that exacerbate the disabling aspects of

autism necessitate the labelling of such a ‘disorder’. Since the current social, political, and

economic landscape necessitates certain social behaviours (e.g. ‘politeness,’ collaborative work

skills, and tact) and responses to sensory input (e.g. being able to work in an office with strong

lighting or sit still in class), subjects who are unable to meet these expectations are thus seen as

disordered. While I am not attempting to argue that challenges attributed to autism would not

exist without capitalism or other political institutions, these challenges may not necessarily be

named, identified, or categorized in the same way.

The malleability of the criteria for an autism diagnosis is perhaps best illustrated through

the changes to Autism Spectrum Disorder seen in the DSM-V4, which were influenced in part by

4 The DSM-IV included several classifications along the autism spectrum: Asperger’s Disorder, Pervasive

Developmental Disorder (not otherwise specified), Rett’s Disorder, and Childhood Disintegrative Disorder. In the

DSM-V, these classifcations were grouped into a single diagnosis titled Autism Spectrum Disorder. For more

information, see Herman 2019.

the autistic community’s resistance to the existence of multiple autisms and eventual

collaboration with the American Psychological Association in developing new criteria (see also

Kapp and Ne’eman 2020). As such, I argue here that the construction of ‘female autism’

reconstructed the category of autism itself, shifting who and what could fall under the category

of autism to align with the social demands of the time.

In fact, there is evidence to suggest that the conceptions of ‘female autism’ being shared

in posts by these bloggers and others have had a direct impact on how clinicians diagnose and

identify autism in female patients. For example, the National Autistic Society in the United

Kingdom offers an online training module “to support professionals to identify autistic women

and girls” which was developed “in conjunction with autistic women” including autistic content

writers (National Autistic Society n.d.). This resource shows how online conversations about

female autism and the circulation of ‘female autism trait’ lists are directly influencing autism

evaluation, therefore reconstructing not only the category of autism in the public imagination,

but also in medical fields.

In this process, other diagnoses are also reconstructed. Some bloggers described being

misdiagnosed or personally misidentifying with other DSM diagnoses, including Borderline

Personality Disorder (Stein 2019c), Depression (Stein 2019c; Tabb 2016), and Bipolar Disorder

(Tabb 2016). By including traits or clinical presentations that would have previously led to a

diagnosis of these disabilities under the classification of autism, not only is the category of

autism remolded, but so are these other categories.

Further, I suggest that the notion of the ‘Female Autism Phenotype’ circulated within

these online communities may impact the way that autistic individuals (particularly autistic

women) perform autism. A number of authors have detailed how there is a performative

component to autism, particularly when seeking diagnosis or supports like social services,

government funding, and academic or workplace accommodations (Nadesan 2005, 2; Morrison

2019, 694). As articulated by Morrison (2019),

diagnosis is often a kind of conflict-ridden Procrustean story-making exercise in which

disabled people must perform or disguise disability in particular ways to be seen to fit a

diagnostic model or category in order to achieve some action in the world. (700)

As such, those who see their experiences as falling under the category of ‘autism’ may

intentionally perform specific behaviours in order to fit a clinician or other gatekeeper’s view of

what autism looks like so that they can more easily obtain a diagnosis, services, or support that

they believe will be beneficial for them. With the knowledge of a so-called ‘female autism

profile’, then, women, girls, and people assigned female at birth may attempt to modify their

behaviours to fit the impression of how autism is supposed to look in a woman according to the

evaluator. I want to clarify that I am not suggesting that these people are ‘faking it’, but rather

that the process of biographic mediation present within a number of disability-related situations

(Morrison 2019) may necessitate a person altering the way they tell the story of their disability to

satisfy gatekeepers and gain access to support that will beneficial for them.

Overall, the way that autistic bloggers have described ‘female autism’ has constructed a

new view of autism in the popular imagination and medical field, thus changing the category of

autism itself and potentially impacting the behaviours of those who identify with it.

Implications for Autism Researchers

While the Female Autism Phenotype has been a focus of much of the recent research

around late diagnosis, this study has shown that it may not be a high priority for late-diagnosed

autistic self-advocates, many of whom hardly discussed the relationship between gender and

autism at all. Researchers looking to honour the wishes of the autistic community in improving

diagnosis may choose instead to investigate possibilities for diagnosis which “treat every autistic

person as an individual with an individual presentation of traits and an individual set of needs”

(Tabb 2021a) that do not involve arbitrary gendered categorizations.

That being said, considering a number of the bloggers in this study were supportive of

self-diagnosis, and due to increased access to tools that may aid in self-diagnosis (see also

Engelbrecht 2023), autism research may instead benefit from a focus on strategies and tools to

support self-diagnosed individuals. At the present moment, a number of autism-related services

(e.g. government benefits, psychological and social support) are only available to those with an

official diagnosis, which it becomes exceedingly clear represents only a portion of the autistic

population. Work should also be done to contribute to the small body of existing research about

autistic community viewpoints on self-diagnosis and why some individuals choose

self-diagnosis. This research may include investigating the barriers to diagnosis discussed by the

bloggers in this study (Tabb 2020; Edwards 2022) which cause some individuals to choose

self-diagnosis and looking for ways to potentially eliminate those barriers for individuals who

would prefer an ‘official’ diagnosis (while recognizing that self-diagnosis is sufficient and

helpful for many individuals).

Further research may benefit from a larger pool of bloggers, specifically those assigned

male at birth. However, it is important to note that there may potentially be fewer bloggers

assigned male at birth due to boys more frequently being diagnosed in childhood. In fact, the

only cisgender male blogger in this sample was diagnosed in the late 1990s, before which autism

diagnoses were much less common as a whole (Silberman 2015, 13; Garcia 2021, xii). For this

reason, late-diagnosed bloggers assigned male at birth (and particularly cisgender men) may

have smaller audiences due to their experiences potentially resonating less with people assigned

female at birth who are late-diagnosed or pursuing an autism diagnosis. Based on the limited

findings from the racialized bloggers in this study, further research may also be beneficial in

understanding perspectives regarding late diagnosis and race.

Conclusion

Overall, this study has demonstrated that although a link between late autism diagnosis

and gender was theorized by a number of autistic bloggers in the mid-to-late 2010s, such

conversations may have become less common and been replaced by a critique of

gender-essentialist approaches to autism in recent years. While the findings of this study cannot

be universally applied to the vast autistic blogger community, they are useful in understanding

the messaging circulating throughout wide segments of the online autistic community due to the

prominence and reach of the bloggers studied.

Despite the fall in prominence of conversations surrounding the Female Autism

Phenotype in recent years, the findings of this study have demonstrated that the late-diagnosed

autistic blogging community has played a significant role in popularizing the notion of a distinct

female autism profile in both community contexts and the medical system. As conversations

about autism unfold at a rapid pace on short-form content platforms like TikTok and Twitter,

further research to document the evolution of such constructions may be beneficial in the

understanding of popular ideas about autism and gender. This finding is particularly important as

it demonstrates the key role that online autistic communities play in shaping perceptions about

autism and even the boundaries of what (socially and diagnostically) constitutes autism.

Further, this study reaffirms that the subjects prioritized in autism research (particularly

in the psy-fields) are frequently not in line with the priorities and needs of the autistic community

themselves. While recent autism research (particularly around late diagnosis) often focuses on

the Female Autism Phenotype and similar theories, a study of prominent late-diagnosed bloggers

has shown that these theories are not a current priority of autistic adults and may distract from

issues that these adults find more pertinent. As such, this research demonstrates the need for

further engagement with the actual perspectives of autistic people in autism research as a whole,

as well as the key role that autistic researchers play in producing autism research.

Appendix A

Original discourse list:

● Neurodiversity paradigm

● Pathology paradigm

● Female autism phenotype

● Neuroqueer

● Extreme male brain theory

Appendix B

Discourse list following coding:

● Autism = disability

○ Autism is a hidden disability

● Autism has always existed

● Autism is hereditary

● Extreme male brain theory

○ Extreme male brain theory (critical)

● Female autism phenotype

○ Autism community circulating female autism ideas

○ Camouflage

● Human rights model of disability

● Neurodiversity paradigm

○ #actuallyautistic (positive)

○ Autism is positive

○ Autistic people as autism experts

○ Critiquing functioning labels

■ Relating to people across functioning labels

○ Diagnosis as positive

○ Drawing similarities between autism and other marginalized identities

○ Increased diagnosis is due to changes in understanding

○ Neurodiversity movement (positive)

○ Rejecting pathologization

○ Self-diagnosis (positive)

● Pathology paradigm

○ #actuallyautistic (negative)

○ Autism epidemic

○ Autism is not positive

○ Diagnosis as negative

■ Wishing they were not autistic

○ Functioning labels (pro)

○ Guilt for passing down autism

○ Medical professionals are experts

○ Mild autism

○ Neurodiversity movement (negative)

○ Neurodiversity paradigm (negative)

○ Person-first language

○ Refrigerator mother theory

○ Severe autism

● Social model of disability

○ Identity-first language

○ Uses identity-first language

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