"Autism is me": An investigation of how autistic individuals make sense of autism and stigma.

Abstract

There are many different perspectives for understanding autism. These perspectives may each convey different levels of stigma for autistic individuals. This qualitative study aimed to understand how autistic individuals make sense of their own autism and experience the stigma attached to autism. The study used critical grounded theory tools. Participants discussed autism as central to their identity, and integral to who they are. While participants thought of autism as value neutral, they expressed how society confers negative meanings onto autism, and thus, them. The findings also indicate that different understandings of autism confer different levels of stigma. Participants expressed constant exposure to stigma and managed this stigma in different ways. Such methods included reframing to more positive understandings of autism, the reclamation of language, and using concealment and disclosure strategically. The implications of these findings are discussed further in the article.

Full text

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
"Autism is me": An investigation of how autistic individuals make sense of
autism and stigma.
Authors:
Monique Botha*, Bridget Dibb and David M. Frost
With acknowledgements to: Patrice Rusconi.
*Corresponding author:
Monique Botha
University of Surrey
Guildford Surrey
GU2 7XH

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
Abstract
There are many different perspectives for understanding autism. These perspectives
may each convey different levels of stigma for autistic individuals. This qualitative study
aimed to understand how autistic individuals make sense of their own autism and experience
the stigma attached to autism. The study used critical grounded theory tools. Participants
discussed autism as central to their identity, and integral to who they are. While participants
thought of autism as value neutral, they expressed how society confers negative meanings
onto autism, and thus, them. The findings also indicate that different understandings of
autism confer different levels of stigma. Participants expressed constant exposure to stigma
and managed this stigma in different ways. Such methods included reframing to more
positive understandings of autism, the reclamation of language, and using concealment and
disclosure strategically. The implications of these findings are discussed further in the article.
Introduction
Autism is understood to be a neuro-cognitive condition in which autistic
1
individuals
are said to lack the ability to infer the minds of others, struggle to empathise, and display
extreme male traits (Baron-Cohen, 2009). Similarly autism is understood as a “triad of
impairments” in which individuals have “impaired social interaction and verbal and non-
verbal communication, and repetitive and stereotyped behaviours” (Van Wijngaarden-
Cremers et al., 2014). Individuals are described as being on the autistic “spectrum” to reflect
the heterogenous nature of autism (Lai et al., 2013). Neither a cause, nor a cure have been
found (DeFilippis & Wagner, 2016). The most extensive study to date indicates a genetic
aetiology (Bai et al., 2019).
Autism has been pathologized as disease or disorder (Evans, 2013). However, autistic
individuals do not typically understand themselves within a model of pathology (Bagatell,
1
Identity-first language is used in this article as the preferred language of the participants of the study and the
wider autistic community (see Kapp et al. 2013). Person-first language would mean referring to a person as “a
person with autism”, whereas autistic individuals prefer referring to themselves “as autistic people”.

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
2007; Kapp et al., 2013). These views are often dismissed, as autistic individuals are said to
lack epistemic authority - that is, the ability to contribute to knowledge formation on autism
(Frith & Happe, 1999; Hacking, 2009a). Indeed, it has been argued that because autistic
individuals are autistic, they lack the ability to produce reliable knowledge on autism (Frith &
Happe, 1999; Hens et al., 2019). Different ways of understanding autism convey different
levels of stigma, however. Autistic individuals tend to have a reliable and scientific
understanding of autism, which is also less stigmatising (Gillespie-Lynch et al., 2017). Thus,
this study aims to qualitatively investigate autistic individuals’ identity and how they consider
autism.
The ‘autistic person’, is not a natural category; instead it materialised as a psychiatric
diagnosis (Evans, 2013; Hacking, 2009b). Autism has developed under technocratic power
structures (Evans, 2013; Silberman, 2015) wherein the power to define the meaning of autism
has been held by non-autistic researchers and medical professionals (Evans, 2013). Autism
has evolved from a form of mental-illness to a cognitive condition (Chapman, 2019; Evans,
2013). Although there is currently an emerging focus on ethical, participatory autism research
(Fletcher-Watson et al., 2019; Milton et al., 2014), some research on autism has traditionally
excluded and dehumanised autistic individuals (for brief discussions see Milton, 2014;
Gernsbacher, 2007; Cowen, 2009).
While not all research on autism is dehumanizing (for example: Cage et al., 2018b,
2018c; Crompton et al., 2019; Kapp et al., 2013), there is still a distinct history of
dehumanizing autism research (Cowen, 2009). Examples of pathology and dehumanization
include conclusions that autistic individuals are undomesticated humans (Benítez-Burraco et
al., 2016), an economic burden (Ganz, 2006; Lavelle et al., 2014), incapable of having moral-
selves, personhood, or community (Barnbaum, 2008), are inherently selfish/egocentric (Frith,
2004), have integrity equivalent to that of non-human animals (Russell, 2012), lack an ability

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
to infer the minds of others (Baron-Cohen et al., 1985), and are sub-human and in need of
rebuilding as “proper humans” (Lovaas et al., 1965). Similarly, unfavourable comparisons to
Great Apes (Tomasello et al., 2005), brain-damaged monkeys (Bainbridge, 2008), and robots
or chimpanzees (Pinker, 2002) have been made. Extensive arguments supporting the use of
eugenics programmes in autism have been published (Barnbaum, 2008; Tantum, 2009), with
exceptions being made only for those who are economically-productive, and “normative
enough” to not make others uncomfortable (Tantam, 2009, p. 219).
As autism is not a natural category (Hacking, 2009b), and instead has derived
meaning from non-autistic researchers who hold technocratic power (as it is the case of most
psychiatric, and disability labels (Smart, 2006)), one should be wary of the consequences of
such narratives. These dehumanising narratives may have more influence than recognised,
especially when framed as being medical and scientific (Smart, 2006). Such perspectives can
become pervasive within society, for example, autistic individuals are considered as having
less human uniqueness than non-autistic people (indicating dehumanisation by non-autistic
people) (Cage et al., 2018b). Autistic individuals, and advocates have highlighted the issue of
dehumanising rhetoric frequently occurring in autism research, and report feeling alienated
by it (Luterman, 2019; Rose, 2020).
Similarly, media representations (Holton et al., 2014; Huws & Jones, 2011; Jones &
Harwood, 2009) and stereotypes of autism (Wood & Freeth, 2016) are predominantly
negative. Eight of the top ten stereotypes non-autistic people associate with autism are rated
negatively (including autistic people having difficult personalities/behaviour, being
withdrawn, and awkward). Similarly, 67% of the media framings of autism in the United
States, and Britain over 15 years had stigmatising cues. In both British (Huws & Jones, 2011)
and Australian (Jones & Harwood, 2009) media, autistic people are portrayed as either
dangerous/unstable, or unloved/mistreated. Thin-slice judgements of autistic individuals are

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
more negative than those of non-autistic peers, who are also less willing to interact with
autistic individuals (Sasson et al., 2017). Both the behaviours related to autism (Sasson et al.,
2017), and the label (Ohan et al., 2015) are stigmatised.
These negative framings and perceptions of autistic people can make autistic
individuals feel pressure to camouflage as non-autistic, despite this impacting their mental
health (Cage et al., 2018b). This is not to suggest that there are no positive framings of
autism, rather that they occur less frequently. Of the top ten stereotypes non-autistic people
hold towards autistic people, only two are rated as positive: “high-intelligence” and “special
abilities” (Wood & Freeth, 2016). These positively rated framings also occur in media
representations of autism, and are associated with Savant-Syndrome (e.g. Sheldon Cooper, or
Rain Man) (Draaisma, 2009).
Autistic individuals are more likely to support models of autism acceptance than
pathologization (e.g. neurodiversity) (Kapp et al., 2013). Neurodiversity is the concept that
autism represents biological diversity in cognitive/neurological function (Singer, 2017). A
central tenant of neurodiversity is that autism does not necessitate suffering (Jaarsma &
Welin, 2012; Kapp et al., 2013; Kras, 2010). Autistic advocates have continued to push back
against strictly negative framings of autism, seeking some form of recognition for a
multifaceted autism, in which there are peaks and troughs of ability (Hacking, 2009a;
Jaarsma & Welin, 2012). Despite neurodiversity being framed as a rose-tinted view of
autism, those who endorse it are more likely to have a balanced view of autism compared to
those who support medicalisation (Kapp et al., 2013). The arguments of neurodiversity, to
some degree, align with the theory of autism as another “form of life” (Chapman, 2019;
Hacking, 2009a). Form of life theory argues that autism constitutes a different form of life,
rather than being a deficit-of-mind. That is one cannot argue autism is a failure of autistic
people inferring the minds of others, when non-autistic people also fail to infer the minds of

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
autistic people, and rate them unfavourably based on this reduced readability (Alkhaldi et al.,
2019). This has been named the double-empathy problem (Milton et al., 2014).
To date, little research has been conducted on the sense-making or narratives autistic
individuals have in navigating these different perspectives of autism, nor how autistic
individuals understand their own autism. Thus, the aim of this interview-based qualitative
study is to use grounded theory tools to investigate what autistic people consider their autism
to be, their experience of autism.
Method
Critical grounded theory (CGT) tools were used in the present study. Critical
grounded theory (also known as critical realist grounded theory) integrates grounded theory
with critical realism (Hadley, 2019; Hoddy, 2018). Critical realism presupposes an objective
reality which exists independently of our interaction with it - however, also that all
description of reality is mediated through filter of language, individual meaning, and social
context (it is impossible to remove perspectivism) (Bhaskar, 1997; Oliver, 2011). It is not the
case that all beliefs are equally as true or false, rather that there can be truer or less true
accounts (Oliver, 2011). Critical grounded theory tools are retroductive in nature, whereby
using them involves abstracting potential mechanistic pathways backwards from experiential
data, to relevant objects, and structures that are thought to make these possible (Hadley,
2019; Hoddy, 2018). Similarly, CGT attends from individual actions through to social
structure (Oliver, 2011). Grounded theory tools are underpinned by a relational standard of
benchmarking that holds the researcher accountable to the researched (Charmaz, 2008). For a
more detailed an explanation of CGT, please see Hadley, 2019, Hoddy, 2018, and Kempster
and Parry, 2011.

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
The use of CGT was central to this research because while the label “autism” may
describe an underlying reality, all accounts of it have been shaped by the perspectives of
those who delineated it (as described in the work by Evans (2013), and Silberman, (2015)).
Further, some understandings of autism may confer more stigma (Gillespie-Lynch et al.,
2017). To date, we have rarely investigated autistic people own meaning making of the nature
of autism (Chapman, 2019). The grounded tools employed in this study allow us access to
this understanding of autism at an individual level by being immersed in the data (a benefit of
grounded theory tools (Oliver, 2011)), while the critical realist application allows us to bring
these individual accounts back into a wider social context of autism.
Reflexive journaling
Reflexive journaling (Janesick, 2015; Ortlipp, 2008) was used throughout the process.
Reflexive journaling helped the lead researcher to make sense of their epistemic
responsibility for this work. Epistemic responsibility refers to a process of taking
responsibility for the impact of ones’ research, and for the implications of making
interpretations from data (Barad, 2007; Teo, 2010). Reflexive journaling was used as a tool
for understanding how characteristics of the researchers might have influenced the perception
of participants and their experiences, and to provide a log for retrospection (Ortlipp, 2008).
These logs were used throughout the process of data collection and analysis to increase
transparency given that understanding of phenomena is shaped by perspective (Bhaskar,
1997).
Recruitment process
Ethical approval was gained before recruitment. Anonymity of participants was
ensured. The only participation incentive offered was entry into a prize-draw. Participants
had to consider themselves autistic (either diagnosed or self-diagnosed were welcome), be at
minimum 18 years of age and have proficiency in English to participate. Participants were

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
recruited both online and locally at [anonymised]. Posters and digital posters were used for
recruitment. Moderators of autism-based online groups were contacted to ask for permission
to advertise in groups. Participants were involved worldwide because autism can be a
culturally situated phenomenon (O’Dell et al., 2016), and the aim of the original study was to
understand a more shared perspective of autistic community connectedness (beyond a British
sample). People emailed the lead researcher to participate and were sent participant
information sheets. If they still wanted to participate a date/time/method of interviewing was
chosen. Methods of interviewing included face-to-face, online using audio-video software, or
a text-based interview (including email interview). At the beginning of the interview the
participant information sheet was given to the participant for a second time before they
received a consent form to sign (manually or electronically). Participants who consented
continued in the study. Participants could consent for their data to be used in this study alone,
or also in secondary analysis.
Sampling method
This study used purposive theoretical sampling. Theoretical sampling is an evolving
sampling method (Corbin & Strauss, 2008). Incoming data are analysed and guide who
should be sampled next. This was important for the study at hand, as the autistic community
is heterogeneous and contains individuals with a wide range of needs. Original methods of
data collection included online audio interviews, and face-to-face interviews (twelve
participants were recruited). Enquires were made by individuals who wanted to take part but
would struggle with these methods. These participants did not communicate verbally, and so
neither the face-to-face nor online-audio interviews would work. An amendment to the
methods was made to allow for a broader range of participants (an amendment to ethical
review was submitted and accepted prior updating methods). During the second stage of

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
collection, participants could also take part via email interview that would not require the
social aspects of audio or face-to-face interviews.
Participants
Twenty-two people expressed interest in participating. Two participants declined after
requesting more information. Twenty participants were recruited for the study. The
demographics are supplied in Table 1. Ages of participants ranged from 21-62 (Mean = 37.2,
SD = 13.1). [Table 1 near here].
Interview method
Face-to-face interviews occurred at the [anonymised] (n = 9). Online interviews were
conducted over ‘ClickMeeting’ via either audio (n=8) or a text-message system (n=1), and
email (n=2). Audio and face-to-face interviews were audio-recorded to allow for transcription
later. For anonymity, only the participant and lead researcher were present at each interview.
The duration of the interview varied (32-92 minutes, (Total = 15.53 hours, Mean = 44.23)),
(excluding three text-based interviews). Face-to-face interviews were held in one location as
all the researchers were based there and did not have the means to interview a global sample
in-person.
As part of the data collection and analysis method, constant comparative methods
(Corbin & Strauss, 2008; Kolb, 2012) were used. This means that data were analysed from
the point of collection, compared to other data collected, compared to the questions which
were asked, and the current framework being developed. If data were emerging from multiple
participants that were not reflected in the interview schedule, relevant questions were added.
If emerging data did not fit within the framework being developed, the framework was
reworked to remain grounded data.
The interview schedule (Appendix A) evolved throughout the process continually
according to what participants discussed. The original interview schedule covered three main

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
topics: diagnosis, identity, and community. The project at the time was to investigate autistic
community connectedness (Botha et al., n.d.). This study has been separated into two papers
– one on stigma and identity, and the other on autistic community connectedness. This was
done to give enough depth and detail in each paper, as the data were rich and informative.
Stigma was so pervasive that regardless of the topic being discussed, participants often
related it back to stigma.
Questions added throughout the process above are outlined in Appendix A. The
questions included stereotypes of autism, how society perceives autism, and whether
participants could tell when someone else they were interacting with was autistic. Stigma was
the main topic which was not asked about in the original interview schedule, but which
became apparent from the data. Prompts were used where a participant had short answers.
Data analysis
Nvivo 10 and 11, were used to manage and analyze the data. The coding was done by
the first author, which allowed for continuity between interviewing, coding, and analysis,
across participants. In presenting the data below, names and identifying information have
been changed for anonymity. All direct quotations have information for traceability. Coding
was carried out according to grounded theory techniques. This means open coding, axial
coding, and selective coding (Hoddy, 2018). The coding process was iterative and non-linear.
During open coding, each interview was coded line by line, according to people’s
understandings of what they are doing and their reasons (Hoddy, 2018). No information was
considered surplus. Tentative links were posited between participants and open codes.
When more than three participants had been interviewed, axial coding began. Axial
coding includes noticing regularities in data between participants and how they discuss events
(Charmaz, 2006; Corbin & Strauss, 2008; Hoddy, 2018). Axial coding aims to understand the
relationship between categories created in open coding. The researcher tries to notice the

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
context in which a category exists. This is a stage of abduction (Hoddy, 2018). Possible
mechanisms are described. Open coding continues alongside axial coding.
During selective coding, core categories are selected and highlighted (Hoddy, 2018;
Kempster & Parry, 2011). The relationships these core categories hold with other categories
are highlighted. The data at this point are abstracted upwards into theory, related to areas of
literature, and compared to other research (Hoddy, 2018). This is where there is a
concretisation of data and their place amongst other research and theory.
Results
Summary of overall findings
Core categories discerned were identity, and stigma. In terms of identity, participants
made clear, a perceived distinction between autistic individuals and non-autistic individuals -
that is, one could either be autistic or not. Participants described a tension between their own
view of autism and society’s and described this tension as burdensome. Participants felt that
autism was value-neutral, akin to race, sexuality, or handedness, but that wider society
considers it a ‘bad’ trait. Participants expressed being caught in a double bind, recognizing
that both disclosure and failure to disclose resulted in negative consequences. Participants
expressed the importance of their autistic identity, stating that even if autism is not central to
their self-perception, it affects their entire perception of the world. Much of the stigma
management discussed by participants involved effects for their identity.
Stigma was a core category, that related to identity, stigma-management. Stigma
related to gendered stereotypes of autism, assumed incompetency, and violence. Participants
described stigma and stereotypes as limiting, and destructive. Participants detailed how these
effects were experienced from childhood, regardless of diagnoses, and resulted in complex
stigma management. Stigma management included concealment and attempts to fit in,

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
strategic disclosure, reclamation of language and identity, and attempts to change the social
meaning of autism itself through reframing.
Identity and autism
Participants spoke about what their autism meant to them. These discussions were
framed around identity. This section will discuss how participants discussed autism, and
identity. Participants views on this were surprisingly homogenous. The way participants
described their experience of autism became an important backdrop for the later discussions
of stigma.
All participants made clear arguments for autism as a biological, value-neutral
internal reality in which autism was inseparable from who they are:
“Autism is me” - (Emma, 40, White, British, female, seeking diagnosis).
“It is very much a core part of my identity because it affects everything… without it I
would be so completely different, you cannot separate it from me”-(Polly, 32, female,
White, British, diagnosed)
“Autism makes me who I am. Yes, autism is an integral part of who I am. It affects the
way I think, communicate and socialise.” - (Carley, 21, female, White, British,
diagnosed).
All participants argued that one could either be autistic, or non-autistic and that
although autism itself was a spectrum, humanity was not a spectrum between non-autistic and
autistic (i.e., not everyone is a “little autistic”). This is epitomised in the following quotes:
“You often get people… who might be described as neurotypical who would take
some typical Asperger symptoms and say oh yes we all feel like that sometimes or we
are all on the spectrum at some point, and I do not agree with that… there is
definitely a marked difference between people who have some type of autism and
people who do not”- (Michael, 55, White, British, male, diagnosed).
“I do not like the “autism spectrum” term because it invites people to say “oh, are not we
all a bit autistic”.” (Olga, 55, White, female, diagnosis pending).
Most participants described autism as value-neutral, akin to height, skin colour, and
handedness, asserting that any value attributed is that of society rather than of autism itself.

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
Similarly, it was not a disease or a disorder. The following quotes show how participants
considered autism as value-neutral:
“Being autistic is a person's feature, just like being tall, or short, or left-handed, or
talented, or deaf, or blind, or dyslexic.” - (Abraham, 47, Israeli, male, diagnosed)
“Autism is not a disease; it’s just a different brain wiring.” - (Polly, 32, White
British, female, diagnosed)
“I just think… I think neurotypical people are just typical rather than healthy. They
do not see autistic people as being just on a different tack, it sees us as being wrong”.
(Michael, 55, white, British, male, diagnosed).
Most participants describe being acutely aware of their difference from non-autistic
people from as early as they can remember (i.e., it did not come with diagnoses/labelling),
diagnoses instead provided a positive avenue for identity. Regardless of this positive identity,
a certain amount of internalisation of external stigma appeared throughout participants
narratives, with participants describing themselves as “weird”:
“I mean, my entire life I've been “weird”. And I've never been someone who
kind of fitted in. Because, I have always been that, you know, square peg in the
round hole.” - (Emma, 40, white, female, seeking diagnosis).
“Because until [being diagnosed] I viewed myself as a misfit, a retarded
genius, an eccentric, a freak. I saw no future for myself anywhere. The
spectrum gave me a new identity, which I view as mostly a positive identity” –
(May, 35, white British, female, diagnosed).
Most participants made clear that there was nothing incompatible between being
autistic and achieving personhood or the ability to thrive other than neurotypical
expectations. Participants acknowledged that autism could still be a disability, but that this
did not limit their capacity for a good life necessarily:
“Autistic people have the same potential for life as any other embryo or child” -
(Ami, 22, White, British, Female, diagnosed).
“The reasons they cite for needing a cure is not [autism] it is that we get bullied or
are difficult to ‘live’ with”- (May, 35, White, British, female, diagnosed).
Stereotypes and stigma

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
When discussing diagnosis, disclosure, discrimination, day to events, childhood, or
employment, an apparent underlying theme was stigma. No matter what was being discussed,
stigma seemed inescapable. All participants described always being on the outside of the
neurotypical world and shunned by society to varying degrees:
“Is it any wonder we are seen as outcasts when society shuns anything marginally
different from it?”- (Charlie, 29, White, British, gender non-binary, diagnosed).
It is interesting how the participant described society as marginalising anything
different in society, as it is not just reflective of ableism, but also applies to a wider minority
status.
There seemed to be an over-whelming awareness that autism is considered an
inherently bad thing by society. Most participants discussed how the narratives we have
around being autistic conveys society’s perceptions of it. The quote below demonstrates this
sentiment. When asked about how the participant believes society views autism, he inferred
stigma from the choice’s parents make around vaccination:
“One of the key reasons people choose not to give vaccinations to their babies is they
don’t want their babies to be autistic… it kind of puts in perspective how people really
feel about it. They would rather literally give their child more of a chance of getting a
deadly disease than have autism. It really means [autism] is a red card. A cross in the
box sort of thing”- (Andrew, 22, Black, British, male, diagnosed).
Stereotypes discussed by participants included the association of autism with a
complete lack of verbalness, being male, being infantile, or capable of violence. In terms of
the stereotype of what an autistic person should look like, participants thought the stereotype
was of a White, male, minimally verbal child.
“All they know of autism is it is children, and they don’t speak”- (Allison, 57, white
British, female, diagnosed).
“A lot of the time autism is associated with cis, het, white males” - (Charlie, 29
gender non-binary, white, British, diagnosed).
Participants described being dismissed because they did not fit the content of this stereotype:
[on disclosing to someone] “You are lying, you can talk…” (May, 35, white British,

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
female, diagnosed)
At the extreme, these stereotypes can act as barriers to diagnosis:
“There’s under-diagnosis of girls on the spectrum, because they defy the
stereotypes”- (Abraham, 47, Israeli, male, single, diagnosed)
“A lot of the time, only boys and men are looked at. Stereotypes have emerged.”-
(May, 35, white British, female, diagnosed)
Extreme stigma described by participants was expressed in how autism has been
linked to violence. Multiple participants (7 of 20) from different regions of the world
discussed their concerns that people associate autism with violence. The two quotes below
summarise both this issue and how autism is pathologized in the media:
“[They see us as] troubled minds, who hack into computers and or blow up schools,
school shootings… It’s rare you hear about autistic adults unless they are the
‘dangerous’ kind…”- (May, 35, white British, female, diagnosed)
“In news report… [autisms] often described as a disease or a high school shooter…
mostly [I feel] annoyed, it’s discussed as a disease a disorder and in its more severe
additions”- (Michael, 55, white, British, male, diagnosed).
The images of autism and violence provided by participants were usually gendered
and referred to school shootings, and how when a White, male commits an atrocity such as a
shooting, the first thing that is talked about is autism.
Stigma management
Stigma management was an axial code of stigma. Understanding stigma in a nuanced
fashion involves understanding the impact of stigma on communities and also how those
communities cope with such adversity (Goffman, 1968). Unidirectional considerations of
stigma acknowledge the limiting consequences of stigma; but not communities’ ability to
resist the impact of stigma. By examining the interaction stigmatized communities have with
stigma-related stressors, we can understand what makes the experiences more or less
impactful (Frost, 2011a). Participants described processes of coping with stigma, such as

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
trying to fit in or assimilate, concealing their autism, and when confident, challenging the
stereotype or stigma, showing the relational aspects of autism.
Double binds: concealment and outness
All participants expressed many situations in which they face “double binds” (Yuksel
et al., 2014). For example, participants discussed how they were “damned if they do and
damned if they don’t” regarding disclosure, because they could tell people, and be judged on
the label, or not tell people, and be judged on their behaviour, but either way there were
consequences:
“I'm damned if I do and damned if I don't if you know what I mean...I can tell people
[I’m autistic] and they think I'm weird and if I don't tell people, they think I'm weird.
When I didn't behave in the way they expected me to - oblique comments were made
by staff” – (Allen, 36, New Zealand, White, male, diagnosed).
In terms of concealment participants discussed childhoods where they tried to
assimilate, and make themselves less “different”. Most participants described the years in
which they had tried and failed to fit in as misspent. Some felt like they had had no childhood
at all. The following quote epitomizes the intense pressure autistic individuals felt to
assimilate, and how it never worked, making them feel like failures:
“I’ve spent my life trying to assimilate. No matter how I try there are aspects of that I
cannot do… mainstream society shuns anything even fractionally different from it…
we are told to perform a circus doggy act every single waking moment of our lives.
We are told to fit in or die.”- (Charlie, 29, gender non-binary, White, British,
diagnosed).
“I spent my childhood trying and failing to fit in”. (May, 35, white British, female,
diagnosed).
Participants discussed concealment due to stigma and stereotypes, regardless of age.
Concealment and withholding were directly talked about with regards to the stigma imposed
on autistic people such as withholding diagnosis because of the worry that people might
associate them with violence.

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
“When I was diagnosed… my kids were still in primary school. I didn’t want to turn
up at the school gates and have other parents go ‘oh yeah that’s the guy with
Asperger syndrome’… simply because there is so much misunderstanding about what
is it… suspicion almost… So yeah, I haven’t really come out as someone with
Asperger syndrome…you see it all the time in news reports… some high school
shooter in the USA who murders his classmates turns out to have Asperger syndrome
so I have been very wary about advertising the fact especially around young children,
just because I think people might react badly like ‘oh we don’t want [him] around
our kids” (Michael, 55, white, British, male, married, diagnosed).
It was still the case, even where some participants could see a potential benefit in
disclosing, participants had a distinct fear of the response others. The implications this has for
receiving support may be important since disclosure is needed for support to be actioned (if
necessary):
“I have a dyspraxia diagnosis and I’ve never disclosed that in the workplace, I
imagine I probably could have benefited from doing so, with the autism diagnosis as
well. But I am very uncomfortable with other people’s perceptions…. There’s not a lot
of awareness… or positivity… I would be very apprehensive about disclosing”-
(Emma, white, female, seeking diagnosis).
Most participants described an unequal dynamic between themselves and neurotypical
people when they did disclose. This included erasing of identity through denial, with
participants being told: “you are not really autistic”. Participants expressed concern that when
neurotypical people deny their autisticness they detract from their identity and self, and in turn
erase their experience and needs. It could be a display of power-dynamics between autistic
individuals and non-autistic individuals, because again, it removes the self-designation, reduces
the meaning of the identity, label, or disability, and then also removes the need for support.
“[when disclosing] people are like, “well everyone’s a bit like that” and it’s ridiculous to
think that you’re really autistic” (Andrew, 22, Black, British, male, diagnosed).
Erasing the participant’s experiences as being autistic increases the distance between
autistic people and neurotypicals by denying the autistic person the space to be themselves.
This concept also links with the idea of relying on stereotypes in allowing for identification
with the spectrum – in essence, unless you present as a stereotypical image of autism, then
you are dismissed.

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
“It makes me feel bitter and angry when [neurotypical people] do not believe me”
(Michael, 55, white, British, male, diagnosed).
Reframing and reclamation: disclosure and language as liberation
Most participants described how language is used to reinforce the place of autistic
people in society, and their sub-humanness. Person-first language was described by
participant’s as a form of control and a reminder that they are not generally considered to be
human. This is demonstrated with the following quote:
“It is part of the dehumanization of autistic people – to have to remind neurotypical
people we are human. It is condescending for person-first language people to be like
remember guys… this is a person in front of you” (Polly, 32, white British, female,
single, diagnosed).
The quote itself lays out a specific power relationship, in which it becomes the duty of
autistic individuals to remind non-autistic individuals of their humanity. Similarly, in the act
of telling an autistic person to reframe their language to person-first language, it implies a
superordinate role for neurotypical people and a subordinate role for autistic people, even for
self-identification.
Some participants describe making a challenge to the social hierarchy with language
and disclosure as tools of liberation. For example, when peers are having a conversation
about autism that reinforces stigma, participants might disclose being autistic in order to
challenge the notions of autism being discussed.
“I mean I know that autism gets a big backlash, quite often I find myself in social
situations, where I am dealing with someone I don't know too well, who would make a
comment, that I think would offend someone on the spectrum and so I will sometimes
just say, ‘I was diagnosed with Aspergers when I was younger, and I don’t think you
should be saying something like that’” - (Ami, 22, White, British, Female,
diagnosed).
Others fantasize about being able to do this but worry about the consequences. This
concept of disclosing to unsettle discriminatory views held by non-autistic peers is described
well by the following participant when he was asked how they handle situations where they
feel they are being treated differently:

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
“I’ve been tempted to tell people that I am [autistic], but I never have. I think people
would be quite surprised that I was autistic and telling them might change how they
see autism” - (Michael, 55, white, British, male, diagnosed).
Participants seem to choose the language as a reclamation of stigmatized labels, to de-
stigmatize them, partly through reinforcing a concept discussed earlier: Autism cannot be
separated from the individual. While some participants did not have a strong preference for
any particular language, most did, and most preferred identity-first language as the less
stigmatizing of the two. No participants preferred person-first language, as all found it in
some way demeaning. This related to two things: Firstly, that autism cannot be separated
from an autistic individual:
“It is why I never use person-first language – autism is intrinsic to who I am” -
(Polly, 32, White, British, female, diagnosed).
And secondly, autism is not a bad thing and does not need to be separated from the
autistic individual:
“saying it as “having autism” is not cool...it sounds like a disease” (Allen 36, White,
male, diagnosed)
“using person first language suggests that autism is an inherently bad thing. when
you say 'they have' it comes under the disease perspective. Like 'they have cancer...
they have MS (multiple sclerosis)”- (Polly, 32, White, British, female, diagnosed).
Discussion
This paper aimed to qualitatively investigate how autistic individuals understand their
own autism and the place of autism in society using CGT tools. The findings give us insight
into impact of stigma according to our understanding of autism. Participants believed that
autism was value-neutral, and inherent to their existence. Autism was predominantly seen as
an important facet of their complicated identities,. Participants discussed a tension between
how they see autism and how society sees it. Participants discussed stigma and stereotypes as
destructive to their identities and lives. Stereotypes associated with autism included autism as

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
a gendered phenomenon, violence, and Whiteness. Participants discussed different methods
of stigma management and how and when they employ them, including concealment,
disclosure, reframing and reclamation. This discussion aims to integrate these findings with
research and to highlight the importance of these findings.
Autism is defined by participants as something that affects their interaction with the
world, making it something that cannot be separated from them; this narrative is in line with
literature autistic advocates publish (Brown, 2017). These framings show a close relationship
between autism and identity. It similarly gives a narrative explanation as to why autistic
individuals tend towards neurodiversity (Kapp et al., 2013). Neurodiversity treats autism as
more value-neutral than medicalised models of autism (Jaarsma & Welin, 2012).
Participants rejected the idea that suffering was inherent to autism, as some research
has hypothesized (Barnbaum, 2008; Mikami et al., 2009). Instead, participants described
autistic suffering as a product of not being neurotypical in a world that demands it, resulting
in isolation, discrimination and victimisation. This gives credence to the idea that autistic
individuals constitute a minority group (Walker, 2012), and are affected by processes of
minority stress (Botha & Frost, 2018) and minority-majority group processes (Botha & Frost,
2018; Cage et al., 2018c; Matthews et al., 2015; Sasson et al., 2017). Participants, in
expressing the discreteness of neuro-types (being autistic versus non-autistic), acknowledge
that they themselves are different, but take issue with society marginalizes everything that is
different.
Stigma was pervasive in the data. When discussing diagnosis, disclosure,
discrimination, day-to-day events, childhood, employment, an apparent underlying theme
was a stigma. No matter what was being discussed, stigma seemed inescapable. Traditionally
autistic individuals have been described as lacking psychological awareness of ‘others’ and
the self (Williams, 2010), however, the current study shows what appears to be a distinct

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
awareness. Participants feel that they are afforded less space in society, and that they carry a
label that society deems unacceptable. One of the clearest images of stigma was how one
participant described it as a ‘red card’ or a ‘cross in a box’ that separates him from other
people, specifically due to how other people construct autism.
The majority of the stereotypes held about autistic individuals are negative (Wood &
Freeth, 2016). Autistic individuals have reported a sense of feeling trapped by the stereotypes
non-autistic people hold of them (Treweek et al., 2018). This was further supported by the
data in this study. Participants described a current social hierarchy in which autistic people
were subjugated, judged, undervalued and erased. Similarly, participants reported changing
their behaviour as a result of stereotypes. This finding is not unique to this study, being seen
even in play scenarios between autistic and non-autistic children, where non-autistic children
take leadership roles and express dominance over autistic children (Bauminger et al., 2008).
The most frequently mentioned stereotypes were that autism was a ‘male’ thing, that
autistic people were capable of violence, and of autism as a ‘White’ disorder. Similarly,
participants mentioned frequent stereotypes of autism, such as autistic people being difficult,
angry, awkward, and less often a genius (Wood & Freeth, 2016). It is interesting that the only
time a participant did mention the stereotype of genius, they prefixed it with the term
“retarded”, juxtaposing a positively rated stereotype of autism with a term which is heavily
stigmatising (Nash et al., 2012). Moreover, that they had internalised these stereotypes to
explain themselves, until they had alternative language for their experience (at which point
they were no longer these things, but rather, they were autistic).
The concept of autism as “extreme male brain” (Ridley, 2018) may contribute, as it
reinforces the idea of autism being or presenting as gendered. However, there is no
substantial evidence for brains being biologically constituted for what Baron-Cohen considers
“sex-specific” tasks (Krahn & Fenton, 2012). A meta-analysis found that for every cis-

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
gendered female in an autism study, there were at least four cis-gendered males (Lai et al.,
2012). This research is then used to develop our knowledge and theories of autism, and
measures, including creating diagnostics from these predominantly all-male samples.
Measures of autism then have become hyposensitive in detecting autism in women (which is
a limitation frequently mentioned in papers (Baron-Cohen et al., 2009)). This has become so
imbedded in the stereotype and associated autism, that it affects the everyday experiences of
autistic individuals.
The “extreme male brain” appears to also shape ideas of autism beyond women and
girls. The association between autism and traits which are gendered in society, including
violence and aggression are carried forward to their extreme (Krahn & Fenton, 2012). Yet,
both objective and subjective measures of perpetration of crime are equal between autistic
and non-autistic individuals (Im, 2016; Weiss & Fardella, 2018). By creating the idea of the
“extreme male brain”, researchers not only further linked autism with an incapacity for
empathy, but also reinforced an idea that men cannot empathize to the degree that women
can. Similarly, it creates a complicated stereotyped landscape for ethnic minorities to
navigate, as violence and aggression are not only gendered concepts, but also typically
attached to Black individuals (Wilson et al., 2017).
Participants navigated situations of double binds. Participants balanced between
whether to disclose (or not), acknowledging that either way they will suffer consequences.
Concealment may have implications as a cognitive burden due to fear of discovery, while
outness may result in increased exposure to discrimination (Frost, 2011). With regards to
autism, these findings are supported by evidence that both the label (Butler & Gillis, 2011;
Matthews et al., 2015) and behaviour (Sasson et al., 2017) of autism are stigmatised. This
means regardless of disclosure, participants experience stigma. Furthermore, it is supported
by evidence that both concealing (Cage et al., 2018a) and outness (Botha & Frost, 2018) have

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
implications for mental health in the autistic community. Participants discussed navigating
these double binds, in terms of access to support, versus stigma. The weight of stigma
appeared to out-weigh the perceived benefits of disclosure resulting in concealment.
The distinction participants drew between being autistic and not (as discrete
categories) may have important implication for the ways in which autistic people manage
stigma. Stigma theory suggests that where categories are discrete and impermeable, members
of socially disadvantaged category will try to elevate the standing of that category (Tajfel &
Turner, 1979). Thus, the focus becomes elevating the social status of the group (Tajfel &
Turner, 1979), which is exactly what neurodiversity gives autistic people an avenue towards
(Jaarsma & Welin, 2012; Kras, 2010) .
There are concerns that concealment of stigma leaves the stigma unchallenged (Wang
et al., 2017). Similarly, by not challenging stigma, it may become internalized (which was
identified in the data). It may also be the case that concealment and internalized stigma have
a reciprocal relationship. For example, studies have found positive, moderate to large
correlations between internalized stigma and concealment in both the concealment of autism
(Botha & Frost, 2018) and mental illness (Lattanner & Richman, 2017).
Reframing and linguistic re-appropriation are both methods of stigma management
(Wang et al., 2017) that were discussed by participants. According to labelling theory, being
assigned a label can result in the acquisition of stereotyping or stigma as a label infers certain
beliefs and behaviours (Link & Phelan, 1999). Labels, however, are not static but rather
dynamic human creations (Hacking, 2006). One could argue that the label of autism has
‘accumulated’ stigma (Ohan et al., 2015). In the case of autism, the label was created to give
meaning to external behaviours observed in a subset of people by individuals with
authoritative voices (Chapman, 2019; Evans, 2013).
Reframing can be seen on both a community and individual level in these data and in

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
research in general; firstly, through the autistic rights movement and neurodiversity which
related to more balanced rather than negative perspectives of autism (Kapp et al., 2013). The
aim of neurodiversity as a movement similarly, is said to be to shift researcher and
community focus away from a strictly deficit-based model. Secondly, through casual
reframing in conversations. This study found that when participants were faced with
stigmatizing comments, they either disclosed being autistic, or considered doing so, to show
that autism can be a positive identity to reframe how people thought of autism.
Similarly, participants discussed language reclamation (Brontsema, 2004). Language
that has been used as pejorative based on the specific qualities of a minority community is
reclaimed by that community and repurposed to mean something other than character
damnation (Brontsema, 2004). Reclamation of pejorative terms has been shown to increase
feelings of power and weaken the labels stigmatising force (Galinsky et al., 2013). This has
happened in the queer community (Brontsema, 2004), and the disabled community (Baglieri
& Shapiro, 2012). Participants discussed reclaiming the term “autistic”, and refusal to bow to
the terms that non-autistic individuals used. Participants rejected person-first language with
the argument that they should not be required to remind people of their humanness, and to
increase the salience of their autistic identity.
Autistic individuals may be managing stigma by reclaiming language. Considering
the unfavourable comparisons that have been made between autistic individuals and animals,
robots, or sub-humanness, it makes sense that part of the process of de-stigmatisation
includes reclaiming autism and redefining the connotative meaning associated. Participants
used identity-first language because they do not consider autism to be negative; thus, it does
not need to be separated from them. This process may be important as self-designation results
in feelings of increased power, as it has been found in other research (Wang et al., 2017).
Limitations

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
A key limitation of this study is that the original interview schedule was not made
with a focus group of autistic people (input would have been extremely useful). Similarly, the
interview schedule was not tailored specifically to the topic at hand (although it was adapted
with incoming data), as it was originally for a separate project, with questions mainly focused
on community connectedness.
A second limitation of the study was the restricted period in which it was carried out
as grounded theory studies are time and work intensive. It is hard to do justice to the entire
body of data collected leaving the researchers with inordinate power to over what to present.
Lastly, although our methods of data collection were wide and varied, allowing us the
opportunity to interview participants who do not communicate in conventional ways, we did
not interview anyone who had disclosed a co-occurring learning disability. Due to the
recruitment methods employed in the study, the sample was biased towards autistic people
who could read. Furthermore, co-occurring conditions were not screened for, or used as
exclusion criteria. Despite some methods of data collection allowing for a spread of
participants geographically (by interviewing over internet) the face to face interviews only
occurred in one country (England) which may have implications for the results, (having said
that, all methods of interviewing yielded similar levels of detail).
Reflection
Reflexive journaling was used a tool to increase self-awareness during the process of
data collection, analysis and during creation of this publication. Reflexive notes were made
before and after each interview and later referred to. The use of reflexive journaling
throughout the process made clear that this research is bourn of a specific context. Elements
of insider-outsider status, power, and privilege, all played a role in the construction of the
results, and their interpretation. As has been mentioned, the lead researcher for this project is

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
also autistic, meaning a shared identity with participants (insider status (Perry et al., 2004)).
On one hand, this intimate knowledge of the experience of autisticness allowed for a more
intimate understanding of what it means to be autistic, which has been described as missing
in autism research (Chapman, 2019). However, it also means that perhaps a non-autistic lead
researcher would have interpreted the data differently. Some participants knew the researcher
was autistic (because of their previous work, or enquiry), others did not. In order to avoid
forced intimacy, the lead researcher only revealed their identity if asked. It was a concern that
if the lead researcher unduly disclosed their autism that participants would disclose more than
they might otherwise.
Reflexive journaling also allowed for the researcher to grapple with the power I had
(as lead researcher) in describing the data (as interpretation of data is an action which with
consequences (Teo, 2010)). Participants also discussed the power that researchers had in
autism research, and the tradition of the autistic ‘subject’. As such, in the full qualitative
project (including this study), every sentence from every participant was coded. This was
done to relinquish some of the power that I had. It was also done, as reflexive journaling
revealed that the lead researcher did not relate to each participant equally, and as such, it was
better to try incorporating everyone’s experience, regardless of relatability.
The use of CGT (Hadley, 2019) was an ideal. Using CGT tools like theoretical
sampling and the constant comparative approach (adding more questions in according to
incoming data), allowed us a chance to remain grounded in participant narratives and
experiences, as did open coding “according to peoples understandings of their experiences”
(Hoddy, 2018). The “critical realist” approach, furthermore, allowed us an understanding of
how autistic individuals make meaning from their autism (and how ‘autism’ is filtered
through perspective and language), without devolving into a relativist idea of autism. This
was particularly important as the original goal of the project was to understand a shared

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
phenomenon (community connectedness), rather than an individual (or relative) experience.
Lastly, the concretisation and contextualisation of data within pre-existing literature (a key
part of critical realist projects), allowed us to abstract potential mechanisms of how autistic
people manage stigma, using language and reframing. This means we abducted from
everyone’s own understanding of themselves, and their situation (from open coding), up into
the social context of autistic lives.
Directions for future research
More research could be conducted on mechanisms of coping with stigma such as
investigating the effects of different stigma management techniques on mental health, and
minority stress in the autistic community. Similarly, group level coping should be further
investigated. For example, community as a resource, or community level reframing, like
neurodiversity. Finally, more research is needed on linguistic reclamation in the autistic
community, as identity-first language is described as less stigmatizing, re-humanizing, and
empowering. Research has found reclamation may be a powerful tool (Wang et al., 2017),
and it may be similar in this circumstance.

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
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Table 1. Demographics of participants
Demographics (N = 20)
n
%
Gender
Male
9
45

"Autism is me": An investigation of how autistic individuals make sense of autism and
stigma.
Authors: Monique Botha*, Bridget Dibb and David M. Frost
Female
9
45
Non-binary
2
10
Ethnicity/ race
White British
13
65
Black British
1
5
White European
2
10
White American
1
5
Mixed-race South American
1
5
White other (New Zealand)
1
5
Undisclosed
1
5
Autism diagnosis
Asperger syndrome
12
60
Autistic spectrum condition
2
10
Pervasive developmental delay
(not otherwise specified)
1
5
No diagnosis
5
25
Sexuality
Heterosexual
13
65
Bi-sexual/ pansexual
5
25
Undisclosed
2
10
Education
Highschool (or equivalent)
7
35
Undergraduate
7
35
Masters degree
5
25
PhD
1
5
Relationship
status
Single
6
30
In relationship
4
20
Married
5
25
Divorced
1
5
Undisclosed
4
20