Angulo & DeThorne (2019) Narratives about autism

AJSLP
Research Article
Narratives About Autism: An Analysis
of YouTube Videos by Individuals
Who Self-Identify as Autistic
Henry Angulo-Jiméneza,b and Laura DeThornea,c
Purpose: The goal of this study was to expand the field’s
understanding of autism through the analysis of 1st-person
perspectives from autistic video webloggers (vloggers).
Method: This study analyzed the representation of autism
in 39 YouTube videos authored by self-identified autistic
individuals and published between 2007 and 2015. Consistent
with the cross-disciplinary tradition of narrative inquiry,
thematic analyses of the video transcripts were conducted.
Findings: Vloggers were predominantly, but not exclusively,
White male adults who spoke mainstream American English
and self-identified as experiencing Asperger’s syndrome.
Key findings included (a) the predominance of a narrative
about autism that incorporated features of both the medical
model of disability and the neurodiversity paradigm to
varying degrees, (b) a trend toward more medical model
features across most content areas, and (c) a relatively
high prevalence of neurodiversity paradigm features
related specifically to language use and the description
of autistic traits.
Conclusions: Implications include the need for clinicians
to (a) familiarize themselves with the varying views of
autism held within the autistic community, (b) reflect on
the language used to talk about autism and listen to how
clients and/or their caregivers talk about it, and (c) consider
the exploration of potential positive dimensions of autistic
traits.
B
autistic individuals currently on an SLP’s caseload, many
of whom are still children, recent years have brought a blossoming of autistic voices and communities on the Internet
through weblogs, listservers, forums, and so forth (Brownlow
& O’Dell, 2006; Davidson, 2008; Donaldson et al., 2017;
Pellicano & Stears, 2011). This study aims to capitalize on
this rich Internet presence to enhance the field’s understanding of autism by extracting first-person perspectives from
online videos where individuals who self-identify as autistic
share their experience of autism with YouTube viewers.
Specifically, the study analyzed 39 video accounts of life on
the spectrum to characterize the vloggers and establish their
representation of autism. The study thus answered the following questions: Who are the vloggers? And do the videos
ased on the rise in autism prevalence rates (Centers
for Disease Control and Prevention, 2017), speechlanguage pathologists (SLPs) are increasingly serving autistic individuals,1 their families, caregivers, and other
related stakeholders across a variety of settings (Donaldson,
Krejcha, & McMillin, 2017). Even though evidence-based
practice requires the integration of client/stakeholder “needs,
abilities, values, preferences, and interests” (American SpeechLanguage-Hearing Association [ASHA], 2004, 2005), firstperson perspectives regarding life on the spectrum are
relatively limited in the scientific literature (DePape &
Lindsay, 2016). Direct knowledge from autistic individuals is central to providing quality clinical services (ASHA,
2005) and for helping interpret academic findings (Pellicano
& Stears, 2011). In addition to the valuable perspectives of
a
Department of Speech and Hearing Science, University of Illinois
at Urbana-Champaign
b
Escuela de Lenguas Modernas, Universidad de Costa Rica at San José
c
Department of Speech, Language and Hearing Sciences, Western
Michigan University at Kalamazoo
Correspondence to Henry Angulo-Jiménez: [email protected]
Editor-in-Chief: Julie Barkmeier-Kraemer
Editor: Erinn Finke
Received March 6, 2018
Revision received June 26, 2018
Accepted October 19, 2018
https://doi.org/10.1044/2018_AJSLP-18-0045
1
Although the authors recognize and appreciate differing opinions
regarding the use of person-first versus identity-first language, the
latter has been used in this article because this study was informed
by the neurodiversity paradigm, whose advocates prefer identity-first
language (Bagatell, 2010; Jaarsma & Welin, 2012; Kapp, GillespieLynch, Sherman, & Hutman, 2013; Oakley, 2012; Peers, SpencerCavaliere, & Eales, 2014; Pollak, 2009; Sinclair, 1999, 2013). This
position is consistent with the American Psychological Association
recommendation that authors respect “what people prefer to be called”
(American Psychological Association, 2010, p. 72).
Disclosure: The authors have declared that no competing interests existed at the time
of publication.
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represent autism as a disorder (medical model), a difference
(neurodiversity paradigm), or both?
This study was motivated by the recognition of varying representations of autism within the autistic/autism community.2 Despite the existence of a plethora of approaches
to disability, this study focused on the two representations
of autism that have been predominant in the autism literature (Donaldson et al., 2017; Gillespie-Lynch, Kapp,
Brooks, Pickens, & Schwartzman, 2017; Kapp, GillespieLynch, Sherman, & Hutman, 2013). Specifically, the study
concentrated on the medical model of disability, which
depicts autism as a biologically given neurological disorder,
and the contrasting neurodiversity paradigm, which portrays autism as a neurological difference. Accordingly, a
brief overview of the canonical forms of the medical model
of disability and the neurodiversity paradigm is provided
below.
The Medical Model of Disability
The medical model of disability dates back to the
18th and early 19th centuries and is prominent among nonautistic laypeople, researchers, professionals from many
fields, and some autistic individuals (American Psychiatric
Association [APA], 2013; Areheart, 2008; Bricher, 2000;
Gillespie-Lynch et al., 2017; Hayasaki, 2015; Shyman,
2016). In this model, disability is conceptualized as the
pathological absence, deficit, excess, or delay in function
and/or form, with respect to some normative standards
(APA, 2013; Davis, 2013; Shakespeare, 2013; Sisti, 2015;
Strauss, 2013). Such deviation from the norm is thought to
be centered within the person’s body and/or mind (Areheart,
2008; Shyman, 2016; Strauss, 2013). Disability is thereby
a biological intrinsic condition that is to be prevented, detected
early in life, and cured or at least ameliorated (Bagatell,
2010; Haegele & Hodge, 2016; Shyman, 2016; Strauss, 2013).
Health professionals, particularly doctors and mainstream
scientists, are considered “cognitive authorities” in disability matters, and they are assumed to provide the necessary expertise related to cause, diagnosis, and intervention
(Brisenden, 1986; Giangreco, 2004; Haegele & Hodge,
2016, p. 197). Accordingly, autistic individuals are expected
to seek a process of normalization, reduction of symptoms,
and/or “adaptation and learning to function despite their
disability” (Donaldson et al., 2017; Goering, 2015, p. 134;
Kapp et al., 2013; Strauss, 2013). Not deferring to professional judgment is often regarded as psychological denial,
refusal to comply, or lack of motivation (Haegele & Hodge,
2016).
2
In this document, a distinction between the autistic and autism
communities is established. The former refers to the group of individuals
on the spectrum, whereas the latter, as defined in Donaldson et al.
(2017), includes not only autistic people but also “their parents and/or
caregivers, friends and family members, professionals serving these
individuals, and other allies and advocates” (p. 56), as well as autism
researchers.
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The medical model view of autism as a pathology is
apparent in the fifth edition of the Diagnostic and Statistical
Manual of Mental Disorders, which is “the standard classification of mental disorders used in clinical and community
settings” (Paul, 2013, para. 3) and guides diagnostic decisions by clinicians worldwide, including SLPs (ASHA, 2010,
2011, 2012a, 2012b, n.d.). The APA classifies autism—or
autism spectrum disorders,3 to use its terminology—as a
neurodevelopmental condition characterized by “persistent
deficits (emphasis added) in social communication and social interaction across multiple contexts, including deficits
in social reciprocity, nonverbal communicative behaviors
used for social interaction, and skills in developing, maintaining, and understanding relationships” (APA, 2013,
“Neurodevelopmental Disorders”). These limitations in social communication and interaction are paired with excesses
that manifest themselves as “restricted, repetitive patterns
of behavior, interests, or activities” (APA, 2013, “Neurodevelopmental Disorders”).
The influence of the medical model—more specifically of the research done and funded within this theoretical framework—has resulted in greater awareness and
understanding of autism and the challenges that come with
it (Pellicano, Dinsmore, & Charman, 2014; Pellicano &
Stears, 2011). Moreover, the medical model has provided
a diagnostic label and a detailed clinical profile that allows
for access to specific accommodations and services, not to
mention the validation and increased self-understanding
that autistic individuals themselves report to attain when
they obtain an autism diagnosis (Huws & Jones, 2008).
Despite these perceived benefits, the canonical form of the
medical model has been charged with a disregard for the
sociopsychological aspects of disability, a focus on the negative dimension of disability, an overfocus on diagnosis,
and an imbalance regarding the influence that medical personnel and disabled individuals have on courses of treatment (Brisenden, 1986; Haegele & Hodge, 2016). These
and other critiques may at least in part explain the emergence of other models such as the social model of disability
and its several reformulations, as well as other disability
interpretation frameworks theoretically related with it, including the neurodiversity paradigm.
The Neurodiversity Paradigm
The neurodiversity paradigm started to develop in
the late 1990s, and it is now favored by many autistic people and some scholars and professionals (Donaldson et al.,
2017; Gillespie-Lynch et al., 2017). This approach to the
understanding of autism is sometimes considered an outgrowth of the social model of disability, given the number
of shared ideas (Gillespie-Lynch et al., 2017; Shakespeare,
2013). Despite their evident conceptual overlap, the connection between the social model and the neurodiversity
3
This diagnostic category merges the former autistic disorder, Asperger’s
disorder, and pervasive developmental disorder–not otherwise specified
(APA, 2013).
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paradigm is rarely made explicit in recent texts about
neurodiversity, which most frequently tie the latter to the
autism rights movement (Armstrong, 2010; Grant, 2009;
Jaarsma & Welin, 2012; Kapp et al., 2013; Silberman,
2015; Strauss, 2013). In his 2015 book about the history
of autism, Silberman claims that the neurodiversity paradigm started to develop when a group of autistic individuals realized that many of the challenges they faced could
be addressed through environmental accommodations
and were not inherent to their neurological differences.
The Internet,4 free from the constraints and demands
of interaction in more traditional social environments,
proved an ideal space for autistic individuals to reach out
to each other and share their ideas both with other autistic people and with groups experiencing other forms of
neurodivergence (Bagatell, 2010; Davidson, 2008; Jaarsma
& Welin, 2012; Kapp et al., 2013; Sinclair, 2010). Today,
the neurodiversity paradigm and its related civil rights
movement bring together and represent not only people
on the spectrum but also individuals from other neurominorities such as those who experience dyslexia, attention-deficit/
hyperactivity disorder, and stuttering (Armstrong, 2010;
Brownlow, 2010; Grant, 2009; Walker, 2014a; Watermeyer
& Kathard, 2016).
A central tenet of the neurodiversity paradigm is the
perception of autistic brains as manifestations of the ordinary variation found across the human species (Jaarsma &
Welin, 2012). For this reason, considering autistic brains
abnormal is akin to considering certain skin colors and sexual orientations anomalous. In other words, autistic brains
are perceived as different, not disordered. Furthermore, the
challenges individuals on the spectrum face are thought to
stem primarily from society’s privileging of nonautistic over
autistic traits (behaviors, abilities, communication, etc.)
and the subsequent design of environments that do not support autistic brains/bodies (Armstrong, 2010; Autistic SelfAdvocacy Network [ASAN], 2016; Dewsbury, Clarke,
Dave, Rouncefield, & Sommerville, 2004; Goodley, 2001;
Robertson, 2011; Strauss, 2013).
The representation of autism as a difference rather
than a disorder has at least three implications. First is
resistance to focusing efforts on attempts to cure autism
(Armstrong, 2010; Grant, 2009; Jaarsma & Welin, 2012;
Parasole, 2015; Pellicano & Stears, 2011; Silvers, 2009;
Walker, 2013, 2014a, 2014b). Second is the call for recontextualization, redefinition, and revalorization of autism
indicators (Bagatell, 2010). For instance, the “excessive
preoccupation with local coherence” regarded as a symptom of autism in the medical model is often reinterpreted
within the framework of the neurodiversity paradigm as
“an unusual and distinctive ability to attend to details
on their own terms, not subsumed into a larger totality”
(Strauss, 2013, p. 467).
4
The Internet for the autistic community has been homologized to
sign language for the deaf community (Brownlow & O’Dell, 2006;
Davidson, 2008).
The last implication of representing autism as a natural and valued form of diversity is its potential for constructing identity. Advocates of the neurodiversity paradigm
encourage autistic individuals to claim autism (Strauss,
2013) as an integral part of their identity and to celebrate it
(Bagatell, 2010; Kapp et al., 2013). This development of
positive identity, in tandem with the possibilities offered
by online spaces, has led to the emergence of an autistic
culture/community analogous to Black, Queer, and Deaf
culture/community (Bagatell, 2010; Jaarsma & Welin,
2012; Strauss, 2013). Autistic culture has and is developed
through different “tools of identity” and “communitybuilding mechanisms” (Bagatell, 2010, p. 39) such as (a) rituals and events (e.g., Autistic Pride Day, the Autreat),
(b) organizations and enterprises run by autistic people (e.g.,
Autism Network International, ASAN, Autonomous
Press), (c) artifacts (t-shirts, books, stimming toys, slogans),
(d) shared vocabulary (e.g., neuroqueer, Aspie, autistic
cousin), and (e) distinctive autistic styles of communication
(Davidson, 2008; Donaldson et al., 2017).
Like other social rights movements, the neurodiversity
paradigm has met opposition from both autistic and nonautistic people, including parents, clinicians, and scientists
(Bagatell, 2010; Parasole, 2015). It has been argued that
the neurodiversity paradigm privileges the experiences and
views of individuals on the spectrum who are less affected by
autism (Bagatell, 2010; Jaarsma & Welin, 2012; Parasole,
2015). Also, some have argued that the neurodiversity paradigm, particularly its resistance to a cure, introduces its
own form of oppression and may be just as harmful for
autistic individuals as the medical model of disability
(Parasole, 2015). Interestingly, though, Bagatell (2010)
asserts that an autistic person’s stand regarding the cure
issue does not seem to correlate with his or her level of support needs. A related controversy is the issue of who is
“autistic enough” to represent other autistic people. Parents
and professionals have argued that some autistic advocates
are not affected enough by autism to represent the autistic
community, yet by that same logic, nonautistic parents and
professionals are not well positioned to represent the best
interest of autistic individuals either (Endow, n.d.; Monje,
2015).
Similar Studies
Many qualitative studies conducted within a narrative research framework have focused on the perspective of
nonautistic parents, social workers, and other stakeholders
(DePape & Lindsay, 2016). The few qualitative studies that
have centered on first-person perspectives from autistic
individuals5 have investigated other specified topics including autistic sensory–perceptual experiences (e.g., Jones,
5
The search for studies similar to the one presented here focused on
academic scholarship; thus, autobiographical books written by autistic
individuals are not included in this discussion of the extant literature.
See Chamak, Bonniau, Jaunay, and Cohen (2008) for an analysis of
19 of these books.
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Quigney, & Huws, 2003), perceptions of physical education classes (e.g., Healy, Msetfi, & Gallagher, 2013), effects
of diagnosis and diagnosis disclosure (Huws & Jones, 2008),
employment (Hurlbutt & Chalmers, 2004), negotiation of
university spaces (Madriaga, 2010), perceptions of friendship (Howard, Cohn, & Orsmond, 2006), and social challenges and supports (Muller, Schuler, & Yates, 2008). The
interested reader is referred to DePape and Lindsay (2016)
for a qualitative metasynthesis of these studies.
Five studies that, like this study, had a wider scope,
investigating the lived experience of autism more holistically, were located. These studies were published in journals
and by authors in special education, psychology, and rehabilitation studies. The researchers collected data in both
physical and virtual spaces from autistic individuals, with
ages ranging from 10 to 35 years. Reasons for collecting
data online included the potential advantage of the Internet
over other environments when it comes to working with
hard-to-reach groups, the reported greater ease with which
many autistic individuals communicate online as opposed
to face-to-face, and the central role of the Internet in enabling autistic users to share experiences and perceptions
(Brownlow & O’Dell, 2006; Jones, Zahl, & Huws, 2001).
Data took the form of answers to interview questions, field
notes, postings in online discussion groups, and artifacts.
These data were submitted to thematic and/or discursive
analyses whose results were in one of the cases shared
with an external autistic consultant (Brownlow, 2010;
Brownlow & O’Dell, 2006; Hurlbutt & Chalmers, 2002;
R. S. P. Jones, Huws, & Beck, 2013; McLaughlin &
Rafferty, 2014).
Key findings from the five studies included autistic
people as cognitive authorities, differences between autistic
and nonautistic individuals as well as among autistic participants, and mixed feelings about autism. In three of
the studies, the researchers found that autistic individuals
perceive themselves as the real experts on autism, arguing
that only someone on the spectrum “can truly know and
understand what autism is” (Brownlow & O’Dell, 2006;
Hurlbutt & Chalmers, 2002; R. S. P. Jones et al., 2013,
p. 138). Comparisons between autistic and nonautistic
people highlighted differences in neurotype, communication
styles, predictability, flexibility, and talent of the individuals in both groups (Brownlow, 2010; Brownlow &
O’Dell, 2006; Hurlbutt & Chalmers, 2002). Comparisons
among autistic individuals both acknowledged the uniqueness of every person’s experience of autism and highlighted
shared traits (R. S. P. Jones et al., 2013). Finally, a perception
of autism as an entity that both gives and takes away and
the mixed feelings associated with such perception were most
apparent in the study of McLaughlin and Rafferty (2014).
In this study, the participating teenagers claimed, for instance, that autism had suppressed their ability to connect with others, but at the same time, they claimed their
condition had provided them with something to make up
for their losses, for example, interest in certain topics and
gifts for certain school subjects (McLaughlin & Rafferty,
2014).
572
This study has similarities and differences with prior
research. First, like previous studies, it purports to add
to the increasing (Davidson, 2008; Humphrey & Lewis,
2008), albeit still relatively scarce, scientific literature focusing exclusively on first-person perspectives of autism.
Second, following the steps of other researchers, it included
an external autistic consultant to help avoid “a diagnostic overshadowing interpretation” of data and counterproductive neurotypical bias (Huws & Jones, 2008; R. S. P.
Jones et al., 2013, p. 134; Kirby, Dickie, & Baranek, 2014;
Preece & Jordan, 2009). Finally, considering the positive
engagement of autistic individuals with the Internet and
other researchers’ call for more autism research in virtual
spaces, in this study, the investigators have opted for collecting data from the Internet, instead of gathering information in a more traditional, face-to-face environment
(Brownlow, 2010; Davidson, 2008; Jones et al., 2003).
Regarding its unique contributions, this study is, to
the best of our knowledge, the first study within communication sciences and disorders (CSD) that used narrative
inquiry to examine first-person perspectives on autism.
Also, the videos analyzed in this study were neither elicited by the researchers nor produced in the (virtual) presence of a (neurotypical) investigator; they are thus expected
to be less filtered by a researcher’s perspective (i.e., more
authentic in qualitative terms). Finally, whereas other studies have collected data from discussion posts (Brownlow &
O’Dell, 2006) and homepage websites (Jones et al., 2003),
this is the first study to analyze video weblog entries.
A vlog is a weblog (or blog) that contains video content (Sharpened Productions, n.d.). The term vlog can refer
to a whole online collection of videos or to a single video
in such collection. In this document, the word vlog will be
used to denote the whole assortment of video weblogs, and
the words video and vlog entry will be used to refer to a
specific video in a vlog. In vlogs, individuals, most frequently
from younger generations, share their opinions and feelings
about different topics, almost always in a natural “diary-like
form” (Holtgrave, 2015, p. 177; Sanchez-Cortes, Kumano,
Otsuka, & Gatica-Perez, 2015; Teijeiro-Mosquera, Biel,
Alba-Castro, & Gatica-Perez, 2015). Because most vlog
entries feature at least the torso and face of the vlogger, researchers can have access to nonverbal aspects of communication, which can in turn assist in data transcription and
analysis. This is an advantage of vlog data over text data
coming from personal webpages and discussion lists.
Method
Narrative Research
Given the researchers’ interest in establishing how the
vloggers represented autism in their videos, a qualitative
research design was deemed most appropriate. Furthermore,
because the vlog entries were nonliterary, autobiographical
accounts of the experience of autism over time (i.e., nonfictional narratives), a narrative inquiry approach was selected. This decision was also consistent with the practice in
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other health disciplines such as medicine, nursing, and psychology (Holloway & Freshwater, 2007; Hurwitz, Greenhalgh,
& Skultans, 2004; Levitt et al., 2018; Polkinghorne, 1988,
2005; Squire, Andrews, & Tamboukou, 2013).
The meaning of narrative here is threefold. It is conceived of as a mental process that allows human beings
to make sense of events and experiences, often taking note
of explanations that are readily available in society (grand
narratives) and accepting, resisting, and/or manipulating
them (Holloway & Freshwater, 2007; Polkinghorne, 2005;
Webster & Mertova, 2007). A narrative is also understood
as the concrete product of that mental process: an experiential account and a window into the meaning given to
experience (Cortazzi, 1993; Polkinghorne, 2005). Finally,
narrative is taken as synonymous with discourse, a stance
toward a given phenomenon that is accessible through linguistic expression (Polkinghorne, 1988). These three understandings of narrative are embraced in this study, and it
is thereby assumed that the videos in the data are the tangible expressions of a process through which the vloggers
have come to forge their understanding of autism.
Research Team
The research team consisted of the two authors, an
external autistic consultant, and eight research assistants.
Both authors self-identify as neurotypical, and one of them
has an autistic family member. The first author identifies
himself as a Costa Rican man with a background in teaching English as a foreign language and linguistics and as a
doctoral student of speech and hearing science. The second
author is a White professor in CSD and an SLP who selfidentifies as a European American woman. The external
consultant identifies himself as a White autistic man with
an academic background in human–computer interaction
and information sciences and technology. He is an independent researcher with extensive experience advancing
disability policy, practice, and research. He has served
as a disability consultant at both state and federal levels,
and he is also one of the founders of the ASAN. The eight
research assistants all self-identify as neurotypical and
female, and they were all pursuing undergraduate degrees
in CSD at the time of the study.
Data Collection
Multiple online searches were conducted by different
members of the research team to locate publicly available
vlog entries whose title was suggestive of the presentation
of an account of autism and/or life with autism. Initial
search key words included autism, Asperger’s, PDD, ASD,
life, what, like, my, story, experience, and autistic. These
words were combined into phrases such as My story of
autism, What it is like to have autism, My life with Asperger’s, Being autistic, and so forth. Other key words and
phrases such as aspie and living with autism were added as
the search progressed. The multiple searches retrieved a
total of 46 candidate videos, which were then watched in
full by the first author and at least one other member of the
research team to determine if they met the inclusion criteria.
That is, the candidate vlog entries were inspected to establish
if they were (a) an experiential account of autism and/or life
with it, (b) authored by individuals who self-identified
as autistic, (c) featured in the vlogger’s own YouTube
channel,6 (d) recorded in English, and (e) uploaded between
2005, when YouTube was launched, and 2015 (Alleyne,
2008), when this study began. Compliance of the candidate video with the inclusion criteria was further assessed
(a) by visiting the Home and About sections of the vlog
channel where the candidate video was featured and (b) during the transcription consensus pass.
Six videos were excluded because they were featured
in the channel of another person or organization and not
in the channel of the self-identified autistic vlogger. When
two vlog entries on the topic of interest were featured in
the same vlog, the more recent video was kept. For this
reason, one of the 46 candidate videos was replaced by another vlog entry by the same vlogger. This process resulted
in a total of N = 39 videos from 39 different vlogs in the
study’s database. Of the 39 videos that met the established
inclusion criteria, 95% (37/39) were uploaded between 2010
and 2015. The oldest video was uploaded in 2007. The
vlog entries ranged in length from 2 min 15 s to 39 min
13 s, with a mean duration of approximately 12 min. The
corresponding transcripts ranged in length from 15 to
352 lines of transcription, with a mean of 105 lines and
a standard deviation of 66 lines. Consistent with the practice of narrative inquiry (Polkinghorne, 1988), there was
no attempt to control the length or specified content of the
videos. Descriptive information regarding the videos can
be found in Table 1.
Data Transcription
Given the importance of the trustworthiness of transcripts for dependability of the research findings in narrative inquiry (Webster & Mertova, 2007), particular
attention was paid to the transcription of the vlog entries.
Each video was transcribed verbatim and in full—including
identifying information—through a two-pass process.
Transcription conventions and guidelines were developed
by the research team and/or drawn from established resources (e.g., Hengst, 2003; Miller & Long, 2005; SimmonsMackie & Damico, 1999), and they were piloted on available vlog entries over a 6-month period to maximize ease
of use, agreement across transcribers, and representation
of important linguistic and paralinguistic features of the
videos. Table 2, which transcribers used for quick reference,
presents the abbreviated version of the transcription conventions and guidelines implemented in the study. The first
transcription pass was completed by one research assistant in charge of transcribing the video, whereas the second (consensus) pass was completed between this research
6
YouTube was chosen given its reported popularity among autistic
individuals (Davidson, 2008).
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Table 1. Information about the videos and their corresponding transcripts.
Vlogger
Adrian
Angel
Anna
Armando
Arwen
Becky
Cher
Dolly
Emilia
Eva
Hosh
Jake
Jason
Jerry
John
Jonathan
Julio
Ken
Luis
Luis Ángel
Matt
Marcus
Mike
Morton
Nelson
Nicole
Oscar
Porter
Ran
Roberto
Rocco
Ruth
Ryan
Steve
Teresa
Toby
Travis
Willy
Y. C.
Year video was uploaded
Length of the video (min:s)
Lines of transcription
2012
2015
2014
2009
2011
2014
2015
2010
2012
2012
2015
2013
2014
2010
2015
2014
2013
2012
2014
2015
2010
2014
2011
2010
2015
2012
2014
2011
2013
2011
2012
2013
2012
2007
2013
2013
2013
2014
2012
06:08
12:38
15:37
07:30
08:40
12:05
18:04
09:40
14:37
02:34
03:10
06:46
03:12
05:37
21:14
15:31
10:01
03:56
07:22
02:48
18:04
17:17
08:57
21:57
15:41
08:18
11:44
02:15
05:16
06:43
13:59
26:31
04:21
22:53
39:13
07:12
10:53
18:04
18:12
42
135
117
82
69
112
181
122
122
25
15
36
31
59
195
115
112
42
70
28
149
153
92
188
181
65
98
18
69
69
166
199
45
101
352
78
107
134
124
assistant and the first author. Transcription disagreements
that could not be resolved in the consensus pass were discussed during weekly research team meetings. During this
time, the whole research team would watch the problematic
stretch of video and agree on its transcription. When agreement was not possible, the corresponding utterance was
judged unintelligible and denoted as such in the video
transcript.
Data Analysis
As is common practice in qualitative research, the
resulting transcripts were submitted to content-based thematic analyses (Aronson, 1995; Braun & Clarke, 2006;
Boyatzis, 1998; Fereday & Muir-Cochraine, 2006; Guest,
MacQueen, & Namey, 2012) to characterize the vloggers
and the vlog entries according to their alignment with
the medical model or the neurodiversity paradigm narrative about autism. In this study, all themes and their corresponding codes were established a priori based on (a) the
researchers’ interest in particular demographic information
574
and (b) the descriptions of the medical model of disability and the neurodiversity paradigm predominant in the
autism literature. The themes and their codes were therefore researcher/theory driven and applied deductively
(Braun & Clarke, 2006; Boyatzis, 1998; Polkinghorne,
1995). In the following two sections, more information
about when and how the themes were established and
applied is presented.
Research Question 1: Vlogger Demographic Information
Generally comparable to the concept of external
validity in quantitative research, the qualitative concept
of transferability refers to the extent to which the findings
of a qualitative study can be transferred to other contexts
or settings (Lincoln & Guba, 1985). Providing enough information to enable readers “contemplating application in
another setting to make the needed comparisons of similarity” is the unique responsibility of the researcher (Levitt et al.,
2018; Webster & Mertova, 2007, p. 101;). The vloggers
were demographically characterized to provide the audience
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Table 2. Transcription conventions abridged.
Aspect
Abandoned word
Abandoned utterance
Duration of video
End of 1-min stretch of video
Font
Identification information
Lengthening
Loudness
Line number
Margins
Nonverbal actions contributing
to meaning
Page numbers
Pauses (organic)
Pauses (filled)
Pauses (two seconds or less)
Pauses (more than two seconds)
Repetition of word(s)
Angulo-Jiménez & DeThorne: Narratives About Autism
Repetitive automatic, uncontrolled,
or unconscious behaviors
Running head contents
Slurring
Spacing
Sustained action
Syllable-by-syllable enunciation
Title of script
Transcriber comments
Transcriber information
Unintelligible words
Whispering
Guideline/mark/info to include
Use * to mark an abandoned WORD
Use > to mark an abandoned utterance (false starts)
Write it on the line following the last line of transcription. Flush right, boldface, and make
it size 18.
Use boldfaced, size 18 /// to mark the end of every 1-min stretch of transcription
Use Times New Roman 12
Preceding the transcript body, record the following information: name, online identity,
age, gender, race/ethnicity, dialect, self-identification, reported diagnosis, and
video URL. Write UNSPECIFIED when the vlogger does not explicitly mention
name, online identity, age, self-identification, or reported diagnosis in any of the
agreed-upon sources. If gender, dialect, and race/ethnicity are not specified by the
vlogger, record your own perception. Indicate this information is perceived by writing
(perceived) in parenthesis following the corresponding piece of info.
Use : to mark lengthening
CAPITALIZE syllable, word, phrase, etc. that is louder
Add to transcript body ONLY
Use 1-inch margins
Enclose in square brackets all those actions that contribute to meaning attained
through verbal action
Insert at the right bottom side of the page
Use regular orthographic marks (commas, periods, semicolons, dashes, etc.)
Spell them out and set them off between commas
Use ellipsis
Use ellipsis + Greek number (length of pause) + ellipsis
Enclose repeated word(s) in parentheses so that all the parts of the utterance remain
together and the repetitions are set off in parentheses on the left.
Use footnotes to call attention to repetitive behaviors perceived as divorced from
verbal utterances, i.e., not evidently produced to add meaning to what is said.
Title of video/name of channel/country/upload date
Use condensed spacing between letters
Double space the document
Underline stretch of speech through which action is sustained
CAPITALIZE and mark separations with hyphens
Center and boldface the title of the video. Report title as included in the vlog entry.
Use footnotes for low-level inferences, hunches, interpretations, observations,
connections with literature, etc.
Following duration line. Justify and boldface. Include name and last date transcription
was revised.
Use Xs to indicate unintelligible words.
Italicize
Example
Many au* Aspies agree with that.
Many Aspies> I mean, we all agree.
That’s all. I guess.
00:03:11
N/A
N/A
N/A
So:, I said “no:”.
N/A
N/A
N/A
I am “normal” [rolls his eyes].
N/A
N/A
I, um, didn’t mean to say that.
I didn’t…mean to say that.
I didn’t…3…mean to say that.
(I didn’t) I didn’t mean to say that.
I love videogames, series…7
N/A
Condensed spacing looks like this.
N/A
I am “normal” [giggles]
PRO-CRAS-TI-NA-TING
A taste of Asperger/autism
First I will tell you about my childhood.8
00:03:11
Transcriber: Henry Angulo
Last Revision: 10/30/2016
I’m a XXX fan.
I watch Ghost Whisperer.
Note. N/A = Not Apply.
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7
Licks his lips. Other examples include swaying, playing with hair,
rocking, etc.
8
Seems to be reading from an outline as he constantly looks down.
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of this document with such information and to address, at
least in part, the aforementioned contentious discussions regarding whose voices are in the best position to represent
the autistic community (Monje, 2015). The researchers were
particularly interested in the vloggers’ age at the time the
vlog entry was posted, gender, country, dialect, race/ethnicity,
self-identification (e.g., autistic, Aspie), and reported
diagnosis—all of which can be aspects of identity that
shape lived experience.
Transcripts were coded deductively and manually for
age, gender, country, dialect, race/ethnicity, self-identification,
and reported diagnosis by the first author and the research
assistant who created the original transcription. When any
of the information of interest was not volunteered by the
vloggers in the videos themselves, it was obtained from the
vlog entry’s description or from the “About” section of
the vlog. The information provided in the video itself took
precedent vis-à-vis contradictory information volunteered
in the other two sources. Explicit statements about gender,
race/ethnicity, and dialect were usually absent in these three
sources. The first author and the research assistants therefore relied on perceptions of gender, race/ethnicity, and dialect to characterize the vloggers and noted these perceptions
in the transcripts (see transcription conventions and guidelines in Table 2). Disagreements as to any of these perceived
categories during the consensus pass were discussed in
weekly meetings. During this time, the whole research team
would watch the video together and come to an agreement
on the vlogger’s (perceived) gender, race/ethnicity, and
dialect. The first author entered the transcripts and associated codes into Atlas.ti, a software package used in the
analysis of qualitative data (Scientific Software Development GmbH, n.d.).
Research Question 2: Vlogger Representation of Autism
To address the question of autism representation,
video transcripts were analyzed to identify features of the
medical model and the neurodiversity paradigm in them.
The analysis was based on predominant descriptions of
both approaches to autism available in the theoretical and
empirical literature (e.g., Armstrong, 2010; Bagatell, 2010;
Donaldson et al., 2017; Haegele & Hodge, 2016; Jaarsma
& Welin, 2012; Kapp et al., 2013; Pollak, 2009; Sisti, 2015;
Strauss, 2013; Walker, 2014a). Specifically, the first author
identified a set of 12 content areas upon which the medical model of disability and the neurodiversity paradigm can
be said to differ. Through a process of triangulated discussion (Levitt et al., 2018) among the authors and the external
autistic consultant, these 12 content areas were reduced to
nine that helped lessen redundancy and best captured distinctions between the medical model and the neurodiversity
approach to autism: (a) language, (b) identified source of
the challenges faced by autistic individuals, (c) description
of autistic traits, (d) position toward the concept of normality, (e) established types of people, (f) conception of
autism in relation to the person, (g) preferred course of action
upon autism and autistic traits, (h) explicit definition of autism, and (i) allocation of autism expertise. Each of the nine
576
content areas was operationalized into two contrasting features that were thought to distinguish the medical model
from the neurodiversity paradigm, thereby yielding a total
of 18 contrasting—albeit not mutually exclusive—features
(nine associated with the medical model and nine associated
with the neurodiversity paradigm). The established contrasting features, which are presented in Table 3, were subsequently reviewed and modified with the second author
and the external consultant as well.
At this point, it is worth reiterating that the contrasting features within each content area and across models
were not necessarily mutually exclusive. To illustrate, vloggers
could use—and in fact used—language associated with both
a disorder (medical model) and a difference (neurodiversity
paradigm) when referencing autism within the same video.
Both contrasting features were therefore recognized and
documented in the vlog entries accordingly. It is also worth
acknowledging that some of the content areas and their associated contrasting features were intricately related. Despite
this, they were distinct enough as to be considered separately
as done in this study and in the literature upon which they
were established.
The 18 contrasting features associated with the nine
content areas worked as preestablished, literature-driven
descriptive themes and were laid out in the instrument presented in Table 4, which also contained examples and general instructions to guide the analyses. The first author used
this instrument to establish the presence or absence of the
18 contrasting features in the vlog entries. The comments
column was used to note nonoverlapping supporting evidence
(e.g., direct quotations) for the presence of a given contrasting
feature in the vlog entries. These and other pieces of nonoverlapping supporting evidence were also identified by the
first author in the digital transcripts stored in Atlas.ti, and
they were assigned a related code for easy retrieval, for example, language, source of challenges, types of people, definition
of autism, and so forth. Importantly, stretches of text, be it
words or multisentential extracts, that were used as evidence
of the presence of a given contrasting feature were not used
to support the occurrence of another contrasting feature.
Debriefing sessions (Levitt et al., 2018; Lincoln & Guba,
1985) between the first and second authors were conducted
weekly to discuss the rationale for associating stretches of
transcript with a given contrasting feature, thus enhancing
the groundedness of the research findings in the data.
Findings
Characterization of the Vloggers
The 39 vloggers included 26 perceived men and 13
perceived women. More than half of the vloggers (n = 21)
did not specify how old they were when the video was recorded; however, the 18 vloggers who did ranged in age
from 13 to 45 years (M = 24 years, SD = 8). To establish
the vloggers’ possible origin within a geographical area
and racial/ethnic group, the researchers drew on perceived
dialect and perceived race/ethnicity as well as on information
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Table 3. Contrasting features of the medical model and the neurodiversity paradigm organized by content area.
Content area
Language
Source of challenges
Description of autistic traits
Position toward the concept
of normality
Types of people
Conception of autism in
relation to the person
Preferred course of action
Explicit definition of autism
Allocation of autism expertise
Medical model
Neurodiversity paradigm
Uses language (that can be) associated with a
disorder narrative about autism
Claims that the challenges faced by autistic
individuals stem from autism
Describes autistic traits with words that suggest
deficit, delay, defect, and/or excess
Assumes normality exists and presents it as
desirable
Separates individuals into “normal people”
and “people with autism”
Conceives of autism as added on top of/
separable from the “real person”
Emphasizes/favors prevention, detection, cure,
and/or amelioration of autism/autistic traits
Defines/refers to autism as a disorder and to
autistic brains as abnormal, deviant, defective,
and/or disordered
Presents nonautistic health professionals,
scientists, and other neurotypical
individuals as the experts on autism
Uses language (that can be) associated with a difference
narrative about autism
Claims that the challenges faced by autistic people
stem from societal privileging of nonautistic
brains/traits
Contextualizes, redefines, and/or revalorizes autistic
traits
Contextualizes, problematizes, and/or resists normality
Separates individuals into autistic and nonautistic/
neurotypical people
Conceives of autism as integral to/inseparable from
the autistic person
Emphasizes/Favors accommodation, inclusion, and
acceptance of autistic individuals
Defines/refers to autism as a neurological difference
and to autistic brains as different, distinct
Presents autistic people as the experts on autism
Table 4. Instrument to identify features of the medical model and the neurodiversity paradigm in the vlogs.
Featurea
Yes (✓)/No (X)
Comments
Medical model
1
Words and lexical constructions that are associated by scholars with a disorder narrative
about autism, or that can be associated with it given their connotation, are used (e.g.,
disorder, deficit).
2
The challenges faced by people on the spectrum are assumed to stem primarily from the
intrinsic features of autism.b
3
Autistic traits are described with words that suggest deficit (e.g., poor), delay (e.g., be
behind), defect (e.g., wrong), and/or excess (e.g., too + adjective).
4
Normality is assumed to exist and presented as desirable.
5
People are separated into normal people and people with autism.c
6
Autism is conceived of as an entity added on top of, and separable from, the real person.
7
Prevention, detection, cure, and/or amelioration of autism/autistic traits is emphasized/
favored over accommodation, inclusion, and acceptance of autism/autistic traits.
8
Autism is defined/referred to as a neurological disorder, and autistic brains are referred to
as abnormal, deviant, defective, and/or disordered.
9
Nonautistic health professionals, scientists, and other neurotypical individuals are depicted
as the experts on autism.
Neurodiversity paradigm
1
Words and lexical constructions that are associated by scholars with a difference narrative
about autism, or that can be associated with it given their connotation, are used (e.g.,
neurotypical, aspie).
2
The challenges faced by people on the spectrum are based on the privileging of nonautistic
brains/traits.b
3
Autistic traits are contextualized (e.g., specifying when a trait is triggered and when not),
redefined (e.g., as gifts), and/or revalorized (e.g., by presenting their positive sides).
4
The concept of normality is contextualized, problematized, and/or resisted.
5
People are separated into “autistic” and “neurotypical” or “nonautistic.”c
6
Autism is seen as integral to, thereby inseparable from, the autistic person.
7
Accommodation, inclusion, and acceptance of autistic individuals are emphasized/favored
over detection, prevention, cure, and/or amelioration of autism/autistic traits.
8
Autism is explicitly defined/referred to as a neurological difference, and autistic brains are
referred to as different, distinct.
9
Autistic individuals are depicted as the experts on autism.
a
Do not use the same piece of evidence for two or more contrasting features. bLook for the establishment of explicit causal links between
experienced difficulties and autism/societal barriers. cOr any other categories that (do not) imply that one group represents the standard or rule.
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about the country the vloggers were targeting in their vlog
(as specified in the “Location” descriptor of the “About”
section of the video channel). Most of the vloggers (n = 23)
were perceived as speaking mainstream American English;
the remainder were perceived as speakers of British English
(n = 5), Australian English (n = 2), Irish English (n = 1),
African American English (n = 1), Spanish-influenced
American English (n = 1), Southern American English (n = 1),
Canadian English (n = 1), and English as a second language (n = 1; the vlogger reported Swedish to be his first
language). The team could not reach consensus on the
specific dialect of the three remaining vloggers, aside from
European non–British English dialect. In terms of race/
ethnicity, most of the vloggers were perceived as White
(n = 33); two, as Latino/Hispanic; two, as Asian American;
and one, as African American. The race/ethnicity of one of
the vloggers was not specified because she did not appear
in the video; her video consisted of a sequence of drawings
with narration. Finally, 16 vlogs had not been set to a specific country; of those that were, 13 were set to the United
States, five were set to the United Kingdom/Great Britain,
two were set to Canada, and one was set to each of the following: Australia, Denmark, and Ireland.
Regarding self-identification9 and diagnosis, the
vloggers reported experiencing Asperger’s syndrome (n = 20),
autism (n = 11), high-functioning autism (n = 3), pervasive
developmental disorder–not otherwise specified (n = 3),
mild autism (n = 1), and borderline Asperger’s (n = 1). Of
the 24 vloggers who reported receiving a professional diagnosis, specified diagnoses included autism (n = 10), Asperger’s
syndrome (n = 10), pervasive developmental disorder–not
otherwise specified (n = 3), and borderline Asperger’s (n = 1).
One vlogger, Ruth, stated that she had never been diagnosed. Age of diagnosis was reported by 13 vloggers
and ranged from 2 to 36 years (M = 12 years, SD = 10).
Co-occurring forms of neurodivergence reported by the
vloggers included obsessive compulsive disorder and synesthesia (n = 1), anxiety and depression (n = 2), schizotypal
behavior disorder (n = 1), sensory-processing disorder (n = 1),
attention-deficit disorder (n = 1), and dermatillomania
(n = 1). Demographic information on each of the vloggers
is summarized in Table 5.
Representation of Autism
Representation of autism was understood in this study
as the specific arrangement of characteristics of the medical
model and the neurodiversity paradigm present in each vlog
entry and in the set of videos in the data as a whole. Almost
a quarter of the vlog entries in the data, 23% (9/39), presented features of the medical model of disability exclusively; that is, they had one or more features of the medical
model and no feature of the neurodiversity paradigm.
None of the videos had only features of the neurodiversity
9
Despite the overlap between these diagnostic categories, because
self-identification was one of the aspects the researchers were interested
in, the vloggers’ own words were honored.
578
paradigm. The remaining 77% (30/39) of the vlog entries
had features of both the medical model and the neurodiversity paradigm in different combinations and proportions
and were thus considered hybrids. Interestingly, although
examining shifting trends over time was outside the scope
of this study, there did not seem to be a tendency toward
more or fewer features of the medical model or the neurodiversity paradigm across the data set. Though one could,
for instance, expect more recent videos to exhibit fewer
features of the medical model and more features of the neurodiversity paradigm, the data did not lend obvious support
to such an expectation. To illustrate, Nelson’s10 video from
2015 exhibited as many features of the medical model as
Armando’s 2009 video (seven in total). Likewise, Arwen’s
2011 vlog entry displayed five features of the neurodiversity
paradigm, and Luis Angel’s 2015 video exhibited only four
features of the same approach. Table 6 specifies the features
of the medical model and the neurodiversity paradigm identified in each video as well as summary statistics regarding
how many total vlog entries presented each feature.
Table 7 summarizes the information to be presented
below for the reader to refer to it as necessary. The percentage and number of videos exhibiting the contrasting
features of the medical model and the neurodiversity paradigm are displayed in the third and fifth columns correspondingly. The sixth column presents the percentage and
number of videos exhibiting both contrasting features
simultaneously. Finally, the seventh column presents the
percentage and number of videos that did not exhibit any
of the features listed in the corresponding row. The reader
is also referred to Table 2 to see the transcription conventions employed in the transcript extracts that will be used as
examples in this section.
Language
In overview, 95% (37/39) of the vloggers used language
that can be associated with a disorder narrative about autism
and with the medical model of disability, and 62% (24/39)
of the vloggers used language that can be associated with a
difference perspective about autism and with the neurodiversity
paradigm. Of interest, 56% (22/39) of the vloggers used language that can be associated with both a disorder and a difference account of autism within the same video, thus being
simultaneously consistent with the medical model and the
neurodiversity paradigm. The use of language associated
with a disorder narrative about autism was the most frequently occurring feature of the medical model of disability.
Likewise, the use of language associated with a difference
10
After much consideration, the research team decided to assign
pseudonyms to the vloggers rather than use their public online identities
for two key reasons. First, even though IRB approval was not required
for the present study given the public availability of the data, it is
common practice in research to anonymize data to the extent possible to
protect privacy and minimize any negative consequences to participants.
Second, the potential vulnerability of the vloggers in terms of age and/or
disability led us toward this more protective stance. We in no way intend
to minimize or limit the voices represented herein.
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Table 5. Demographic characterization of the vloggers.
Assigned
pseudonym
Angulo-Jiménez & DeThorne: Narratives About Autism
Perceived
gender
Reported age
Adrian
Angel
Male
Female
19
Unspecified
MAE
MAE
Asian American
White
AS
Autism
Yes: AS
Yes: Autism
Unspecified
Unspecified
Anna
Armando
Arwen
Becky
Female
Male
Female
Female
22
Unspecified
Unspecified
Unspecified
MAE
MAE
MAE
MAE
White
White
White
White
Female
Unspecified
European, non-BrE
White
No
No
No
Yes: borderline
Asperger’s
Yes: AS
NA
NA
16
Unspecified
Cher
AS
Autism
AS
Borderline
Asperger’s
AS
Unspecified
Dolly
Emilia
Eva
Hosh
Jake
Female
Female
Female
Female
Male
Unspecified
20
Unspecified
Unspecified
13
White
White
White
Unidentifiable
Hispanic/Latino
Autism
PDD-NOS
AS
HFA
AS
Yes:
Yes:
Yes:
No
Yes:
Unspecified
3
Unspecified
NA
10
Jason
Jerry
John
Jonathan
Julio
Ken
Luis
Luis Ángel
Matt
Marcus
Mike
Morton
Nelson
Nicole
Oscar
Male
Male
Male
Male
Male
Male
Male
Male
Male
Male
Male
Male
Male
Female
Male
Unspecified
20
Unspecified
Unspecified
33
24
30
Unspecified
17
Unspecified
19
Unspecified
Unspecified
16
36
MAE
MAE
MAE
European, non-BrE
Spanish-influenced
English
BrE
MAE
Irish English
MAE
MAE
MAE
SAE
Australian English
MAE
MAE
MAE
ESL
BrE
MAE
AAE
White
White
White
White
White
White
White
White
White
White
White
White
White
White
African American
Autism
Autism
AS
AS
AS
PDD-NOS
AS
AS
Autism
PDD-NOS
Autism
AS
AS
AS
AS
No
Yes: autism
No
No
No
Yes: PDD-NOS
No
Yes: AS
No
Yes: PDD-NOS
Yes: autism
Yes: AS
No
No
Yes: AS
Perceived dialect
Perceived
race/ethnicity
Selfidentification
Reports
diagnosis?
AS
PDD-NOS
AS
autism
Age of reported
diagnosis
NA
2
NA
NA
23
4
NA
Unspecified
Unspecified
2
10
Unspecified
NA
NA
36
Reports
co-occurring form
of neurodivergence?
No
Yes: synesthesia
and OCD
Yes: dermatillomania
No
No
No
Yes: schizotypal
behavioral disorder
No
No
No
No
No
No
No
No
No
No
No
No
No
Yes: ADD
No
No
No
No
No
Yes: sensory processing
disorder
(table continues)
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Table 5. (Continued).
Assigned
pseudonym
Perceived
gender
Reported age
Perceived dialect
Perceived
race/ethnicity
Selfidentification
Reports
diagnosis?
Porter
Ran
Roberto
Rocco
Ruth
Ryan
Steve
Teresa
Female
Male
Male
Male
Female
Male
Male
Female
Unspecified
26
Unspecified
Unspecified
45
Unspecified
28
Unspecified
BrE
BrE
BrE
MAE
MAE
MAE
European, non-BrE
Australian English
White
White
Hispanic/Latino
White
White
White
White
White
Autism
AS
HFA
AS
HFA
AS
Autism
AS
Yes:
No
No
Yes:
No
No
Yes:
Yes:
AS
AS
Unspecified
NA
NA
13
NA
NA
26
Unspecified
Toby
Travis
Willy
Male
Male
Male
23
Unspecified
24
MAE
MAE
MAE
Asian American
White
White
Autism
Mild autism
AS
Yes: autism
Yes: autism
Yes: autism
6
2
Unspecified
Y.C.
Male
24
Canadian English
White
Autism
Yes: autism
Unspecified
autism
AS
Age of reported
diagnosis
Reports
co-occurring form
of neurodivergence?
No
No
No
No
No
No
No
Yes: anxiety and
depression
No
No
Yes: anxiety and
depression
No
Note. MAE = mainstream American English; AS = Asperger’s syndrome; OCD = obsessive compulsive disorder; NA = not applicable; BrE = British English; PDD-NOS = pervasive
developmental disorder–not otherwise specified; HFA = high-functioning autism; SAE = Southern American English; ADD = attention-deficit disorder; ESL = English as a second
language; AAE = African American English.
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Table 6. Features of the medical model and the neurodiversity paradigm in each video.
Model
Feature
Vlogger Adrian
Angel
Anna
Armando
Arwen
Becky
Cher
Dolly
Emilia
Eva
Hosh
Jake
Jason
Jerry
John
Jonathan
Julio
Ken
Luis
Luis Angel
Matt
Marcus
Mike
Morton
Nelson
Nicole
Oscar
Porter
Ran
Roberto
Rocco
Ruth
Ryan
Steve
Teresa
Toby
Travis
Willy
Y.C.
Total
39
Neurodiversity paradigm
Uses language that can be
associated with a disorder
narrative about autism
Claims that the challenges
faced by autistic individuals
stem from autism
Describes autistic traits with
words that suggest deficit,
delay, defect, excess
Assumes normality exists
and presents it as desirable
Separates individuals into
“normal people” and “people
with autism”
Conceives of autism as
added on top of the “real
person”
Favors prevention, detection,
cure, and/or amelioration
of autism
Defines/refers to autism
as disorder and to autistic
brains as abnormal, deviant,
defective, and/or disordered
Presents non-autistic health
professionals, scientists, and
other neurotypical individuals
as the experts on autism
Uses language that can be
associated with a difference
narrative about autism
Claims that the challenges
faced by autistic people
stem from societal privileging
of non-autistic brains
Contextualizes, redefines, and
or/revalorizes autistic traits
Contextualizes, problematizes,
and/or resists normality
Separates individuals into
autistic and non-autistic/
neurotypical people
Conceives of autism as
integral to the autistic person
Favors accommodation,
inclusion, and acceptance
of autistic individuals
Defines/refers to autism as
a neurological difference and
to autistic brains as different,
distinct
Presents autistic people as
the experts on autism
Medical model
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29
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narrative about autism was the feature of the neurodiversity
paradigm that the vlog entries exhibited most often.
To illustrate the different language choices made by
the vloggers, Becky states that “people with Asperger’s
or Asperger tendencies are able to pretty well function in
society.” Notice the use of person-first language and the
description of levels of functioning established vis-à-vis a
societal standard, both commonplace in the medical model
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20
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3
5
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of disability (Bagatell, 2010; Sinclair, 1999). In contrast,
Angel’s language choices align with the neurodiversity
paradigm when she asserts that “being autistic means that
your brain functions differently.” She uses identity language (one is autistic, not a person with autism; Sinclair,
1999). Interestingly too, she compares autistic functioning
to neurotypical functioning and describes the former as
different: Some autistic individuals function differently, not
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well or poorly, when compared to the larger nonautistic
group. Finally, in the preview to his video, Julio states:
“I’m an aspie (…)11 a lot of people are having a hard
time understanding what it’s like to have my disorder (…)
this video will be on (…) what it means to have Asperger’s
in the everyday experience.” In this case, note that the use
of aspie as an identity is consistent with the neurodiversity
paradigm, whereas the constructions of having a disorder
and having Asperger’s are consistent with the medical model.
Source of Challenges
The source of the challenges faced by autistic individuals was not identified in 8% (3/39) of the videos. In
the remainder 36 vlog entries, 87% (34/39) of the vloggers
claimed that the challenges result directly from autism,
making this feature of the medical model the second most
frequently occurring in the videos; 13% (5/39) described
the challenges as stemming from society’s privileging of
neurotypical brains; and 8% (3/39) described the challenges
as being both biological and societal in nature.
To illustrate the attribution of challenges to autism,
in his video, Rocco describes a hypothetical situation
where an autistic “kid in class scoffs at an assignment or
just completely tosses it to the side (…).” The vlogger explains the child’s behavior by stating that the child “has
(…) Asperger’s syndrome, which very very much (…) puts
his social understanding ability in a shit hole (…).” In
other words, per the vlogger, the child’s difficulty to fulfill the given task results from his autistic lack of “social
understanding,” although the same vlogger had mentioned previously that the child was “sick of doing the same
thing over and over again,” thereby making boredom or
tiredness a plausible alternative explanation. Conversely,
Luis Angel accounts for his difficulties by referring to society’s
failure to accommodate him:
(…) I have an incredibly structured, organized,
systematic, logical brain (…) the biggest problem
that that presents is that most people…don’t have
a brain like that. Unfortunately, the world is built to
accommodate normal [makes air quotes]…people,
and it’s not built to accommodate me (…) there’s
lots of situations where [closes eyes and slightly
shakes head] it’s extremely difficult for me, simply
for the that fact I…don’t do things the same way
as other people do things.
Finally, representing a merger of the two approaches
to the source of challenges, Angel attributes the difficulties
faced by autistic people to both biologically given and
socially constructed aspects. She states, “Autism is a different kind of brain (…) but it’s also a disability. This is
because the autistic neurotype is often accompanied by impairments,” thus acknowledging a biological aspect. Later
in the vlog, she comments, “It’s tough being autistic in a
world that’s built for non-autistic people,” thereby recognizing a societal aspect to her disability.
11
As usual, (…) indicates that words were removed in the quote.
582
Description of Autistic Traits
It was not possible to establish the specificity of
the vlogger’s perception of autistic traits in 10% (4/39)
of the videos. In the remaining vlog entries, 74% (29/39)
of the vloggers described autistic traits with words that denote deficit, excess, delay, and/or defect. This was the third
most frequently occurring feature of the medical model in
the videos. The following are some examples:
Deficit. “But, another issue I have with my autism is
eye contact. I lack eye contact.” (Matt)
Excess. “I would sort of like do [flails arms around]
this a lot when I talk, or I would usually talk too
loud.” (Nicole)
Delay. “I still think I’m (…) a little bit socially
delayed.” (Ken)
Defect. “But I knew deep down in my heart (…) that
sincerely something was different about me, something
was wrong about me.” (Marcus)
In contrast, 51% (20/39) of the vloggers contextualized, redefined, and/or revalorized autistic traits in their
videos, making this the second most frequently occurring
feature of the neurodiversity paradigm. Porter, for instance,
both contextualizes and revalorizes the concept of selfstimulatory behaviors; she states, “As strange as it is, we hit
ourselves because it’s pleasurable, but only when the world
feels unpleasurable (…) we spin as an activity. Believe it or
not, it helps stimulate our brains. It really does help us
think.” Luis refers to autistic traits as “quirks” and states
the following about his restless mind:
(…) when I lay down my head at night (…) most
people (…) can just go to sleep, turn their mind off,
and rest (…) not me. That channel is still clicking.
There are a hundred different stories going on my
mind, and it’s darn near impossible to turn off my
mind and just sleep because stories are going on over
and over and over in my head (…) But (…) that’s
the part of my creativity and, uh, the reason why I
like to write, and where the ideas come from (…).
Lastly, 36% (14/39) of the vloggers both (a) described
autistic traits with words that suggest deficit, defect, delay,
and/or excess and (b) contextualized, redefined, and/or
revalorized such traits. Morton, for example, states in relation to specific interests:
(…) everybody has different things they like, but a
person with Asperger’s do it a bit too well (…) a lot
of people with Asperger’s are obsessed, uh, not always
a bad thing. My dad is a train driver an engineer, and
he likes doing things with engines, which is a good
thing; he’s a good engineer, I guess.
The vlogger describes the so-called restricted interests
as obsessions (excesses), but at the same time, he contextualizes and revalorizes these obsessions: They are not bad
all the time; in fact, in the case of his father—who per the
vlogger is autistic as well—they have probably helped him
to become a good engineer.
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Table 7. Number of videos exhibiting each feature of the medical model and the neurodiversity paradigm.
Topic
Neurodiversity
paradigm
Number
of videos
Uses language that can be
associated with a disorder
narrative about autism
Claims that the challenges
faced by autistic individuals
stem from autism
95% (37/39)
62% (24/39)
56% (22/39)
0
13% (5/39)
8% (3/39)
8% (3/39)
Describes autistic traits with
words that suggest deficit,
delay, defect, and/or excess
Assumes normality exists and
presents it as desirable
Separates individuals into
“normal people” and “people
with autism”
Conceives of autism as added
on top of the “real person”
Prevention, detection, cure,
and/or amelioration of autism
74% (29/39)
Uses language that can be
associated with a difference
narrative about autism
Claims that the challenges faced
by autistic people stem from
societal privileging of
nonautistic brains
Contextualizes, redefines, and/
or revalorizes autistic traits
51% (20/39)
36% (14/39)
10% (4/39)
Contextualizes, problematizes,
and/or resists normality
Separates individuals into
autistic and nonautistic/
neurotypical people
Conceives of autism as integral
to the autistic person
Accommodation, inclusion,
and acceptance of autistic
individuals
Defines/refers to autism as a
neurological difference and
to autistic brains as different,
distinct
Presents autistic people as
the experts on autism
8% (3/39)
0
49% (19/39)
13% (5/39)
0
38% (15/39)
26% (10/39)
3% (1/39)
38% (15/39)
15% (6/39)
0
56% (22/39)
8% (3/39)
0
69% (27/39)
3% (1/39)
0
92% (36/39)
Medical model
Language
Source of challenges
Description of autistic traits
Position toward the
concept of normality
Types of people
Angulo-Jiménez & DeThorne: Narratives About Autism
Number
of videos
Number of
videos presenting
both features
simultaneously
Conception of autism
in relation to the person
Preferred course of action
Explicit definition of autism
Allocation of autism expertise
Defines/refers to autism as a
disorder and to autistic brains
as abnormal, deviant, defective,
and/or disordered
Presents nonautistic health
professionals, scientists,
and other neurotypical
individuals as the experts
on autism
87% (34/39)
44% (17/39)
49% (19/39)
38% (15/39)
28% (11/39)
23% (9/39)
5% (2/39)
Number of
videos presenting
none of the features
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Position Toward Normality
In relation to normality as a concept, 49% (19/39) of the
vloggers did not make any statement from which their position
could be inferred; 44% (17/39) of the vloggers appeared to
assume the existence of normality and presented it as desirable. To illustrate, Jerry describes how, “through therapy,”
his “high level of motivation,” and his mother’s and peers’
“determination and high will power,” he has been able to
continuously “better” himself, breaking “barriers” erected by
his autism and becoming “unsevere.” The vlogger concludes
by reminding his autistic viewers that “(…) life has many
challenges, regardless of how unsevere you can become”
and that “there will always be light at the very end of the
tunnel.”
Conversely, 8% (3/39) of the vloggers contextualized,
problematized, and/or resisted the concept of normality.
An example of resistance comes from Dolly’s video in which
she describes the process of coming to embrace her disability. She comments, “(…) since I’ve become more conscious
of identifying as disabled and less upset about being disabled, (…) if I’m walking along, and I know that I’m walking differently from someone else, it’s like, ‘surprise! I guess
I’m disabled, so I walk like I’m disabled. Shock!’ Not really big deal.” Then she adds, “(…) professionals always
talk about socials skills, and they frame social skills as
being, um, able to look normal, but, I mean, what I would
call my social skills have vastly improved now that I don’t,
um, care about that anymore (…).”
Types of People
In regard to referencing groups of people, 38% (15/39)
of the vloggers did not refer to nonautistic people in their
videos or used more generic words to refer to them, for example, “other people” and “most kids.” Forty-nine percent
(19/39) of the vloggers separated people into “normal”
people and “people with autism.” To illustrate, Jonathan
defines a person who experiences Asperger’s syndrome as
follows: “(…) it’s like a hybrid of like autism and just a
normal person.” Nelson asserts, “You know, I kind of, like,
blend in with the normal, but, the truth is, I am not normal.” On the contrary, 13% (5/39) of the vloggers used
words that did not categorize people according to normalcy.
For instance, although Angel and Arwen separate nonautistics from autistics, the words they use do not imply
normality but typicality. Angel states, “When a little
fetus is developing, it’s either going to be neurotypical or
neuroatypical.” Arwen asserts, “Aspie brains work differently from neurotypical brains, which means that we
can see solutions to problems that neurotypicals just don’t
think of.”
Conception of Autism in Relation to the Person
The vlogger’s conception of autism in relation to the
person could not be established in 38% (15/39) of the vlog
entries. However, 38% (15/39) of the vloggers described autism as something added on top of the real person. Marcus,
for instance, states, “I have this disability (…) It does affect
me, but it does not affect me on who I am as a person. I am
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a human being.” In contrast, 26% (10/39) of the vloggers
depicted autism as integral to the person, making this the
third most frequently occurring feature of the neurodiversity
paradigm in the videos. For example, Matt states, “So, if
there were a cure for my autism and ADD, I would not
take it because it makes me who I am, and I don’t want to
change that.” Finally, one vlogger (3%), Jonathan, talked
about autism as both an addition to and an integral part
of the individual. By the end of the vlog entry, he addresses
his viewers directly saying, “Don’t let a title bring you down
to, like, the definition of your life. Okay? That title isn’t
you. I mean, it’s gonna be with you for like your whole life
and such, but that’s not you. You are you. That’s just a
part of you.” However, earlier in the video, he had stated,
“It’s what we are, and, I feel like if I was offered a cure for
my Asperger’s, I would turn that down like, ‘No way!’ I
mean, my Asperger’s is me, and I would lose me.”
Preferred Course of Action
The vlogger’s preference in relation to prevention,
detection, and cure or accommodation, inclusion, and acceptance was not readily inferable in 56% (22/39) of the
vlog entries. Regarding this same topic, 28% (11/39) of the
vloggers favored prevention, detection, and/or cure of autism in their videos. To illustrate, Willy, who does not believe that people are born autistic, shares his resolution to
try to cure his Asperger’s syndrome; he states, “(…) I’m
gonna continue to heal my body, and we’ll see if I can cure
this, just like I was trying to cure my anxiety and depression; um, it’s no different.” On the contrary, 15% (6/39) of
the vloggers argued for the accommodation, inclusion, and
acceptance of autistic individuals. Angel, for instance, states:
It’s tough being autistic in a world that’s built for
non-autistic people, but that’s what accommodations
are for. What accommodations do is level the playing
field for people with disabilities because when you’re
disabled, when you have impairments, you don’t have
the same opportunities as non-disabled people, but
accommodations can change that.
Explicit Definition of Autism
In relation to this content area, 69% (27/39) of the
vloggers neither explicitly defined autism nor used any of
the contrasting words to refer to it (e.g., disorder and difference). From the remaining vloggers, 23% (9/39) defined
or referred to autism as a neurological disorder and to autistic brains as abnormal, deviant, defective, or disordered.
Conversely, 8% (3/39) of the vloggers defined or referred
to autism as a neurological difference and to autistic brains
as different. From the former group, Jake defines “autism/
Asperger” as “a little disorder or some sort of thing that
goes (…) inside you, and you can’t get it out. There’s no
cure. It’s just yourself.” Angel, in contrast, defines autism
as “(…) a different kind of brain (…) a different kind of
brain wiring.” She comments, “Being autistic means that
your brain functions differently. The structure of the brain
may be different than non-autistic people’s brain, and the
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different areas of the brain and how they talk to each other
may be different as well.”
Allocation of Autism Expertise
Regarding autism expertise, 92% (36/39) of the vloggers
did not address this topic in their videos. Two presented nonautistic health professionals as the experts on autism, and one
highlighted that autism expertise can only be attained when
you are autistic. In response to critiques that she does not look
autistic enough, Arwen, for instance, addresses skeptics by
highlighting the expertise of health professionals. She says,
“It is…so ignorant…to assume through a 10-minute video…
3…that you know more about what it’s like in here [taps her
head]…than all of the experts…that have…3…evaluated me,
tested me…7…It’s ridiculous really.” In contrast, like the
participants in other studies (Brownlow, 2010; Brownlow &
O’Dell, 2006; Hurlbutt & Chalmers, 2002), Ryan perceives
autistic individuals as the only experts on autism; he argues:
There are a lot of you that might think you understand
what it is like to live with Asperger syndrome, but you
really don’t (…) Just reading up on it, what it is, and
asking a doctor for answers about it will never give you
the full picture. You have to be someone with Asperger’s
syndrome, such as myself, to really understand.
In the following Discussion section, the study’s key
findings are reviewed, associations to prior studies are drawn,
and implications for both research and clinical practice
are offered.
Discussion
Description of the Vloggers
Most, but not all, of the vloggers in this study’s data
can be described as White male adults who reported to
experience Asperger’s syndrome and were likely from the
United States. This profile is consistent with the profile
of most autistic participants within research in general and
within first-person perspective inquiry in particular (Blagrave,
2016; DePape & Lindsay, 2016; Gelbar, Smith, & Reichow,
2014; Gillespie-Lynch et al., 2017; Kirby et al., 2014;
Mazurek, Engelhardt, & Clark, 2015). The larger presence
of White males in the data may result from the reported,
albeit sometimes contested, higher prevalence of autism
spectrum conditions among males from this racial/ethnic
group (Christensen et al., 2016). In addition, the format
of the data might have been a factor in the larger number
of vloggers who reported to experience Asperger’s syndrome:
Online vlogs might be more accessible to individuals with
this autistic profile. Finally, the inclusionary criterion that
the videos had to be in English was likely responsible in
part for the high prevalence of vloggers tied to the United
States, as the United States is one of the largest Englishspeaking countries in the world (Masani, 2012).
Regardless of the reasons behind the demographics
of the vloggers, we wish to highlight, as other researchers
have, the need for more inquiry focused on the experiences
of individuals from underrepresented sectors of the autistic
community, such as females, children and adolescents, members of non-White ethnic/racial groups, nonspeaking individuals, and people with autism spectrum diagnoses different
from Asperger’s syndrome. What is known about autism comes
mainly from White male adults who experience Asperger’s
syndrome or, to say it in the words of some vloggers, “a
high-functioning form of autism.” The call for more research
analyzing the experiences of underrepresented groups is
justified by the likely influence of intersectional identities
on an individual’s narrative about autism, as well as by the
implications for professional practices that may arise from
such distinct narratives (Burkett, Morris, Manning-Courtney,
Anthony, & Shambley-Ebron, 2015; Carrington, Templeton,
& Papinczak, 2003; Cridland, Jones, Caputi, & Magee, 2014;
Gillespie-Lynch et al., 2017; Jones et al., 2013). Online
discussions and logs, personal websites, and autobiographical books prove useful and convenient data sources for
researchers and clinicians who wish to obtain firsthand accounts of the condition from individuals belonging in
unrepresented sectors of the autistic community.
Representation of Autism
There were three key findings in relation to the representation of autism within the videos. First and foremost
was the prevalence of a hybrid narrative about autism among
the vloggers (see Tables 6 and 7). This finding is consistent
with the results of previous studies of autistic perspectives—
including those reviewed earlier—according to which there
is often a complex representation of autism among individuals on the spectrum that contrasts with the monolithic
account of the condition that predominates within the
scholarly literature and among researchers, professionals,
and laypeople (Brownlow, 2010; Brownlow & O’Dell, 2006;
Davidson, 2008; Donaldson et al., 2017; Gillespie-Lynch
et al., 2017; Hurlbutt & Chalmers, 2002; Jones et al., 2013;
Kapp et al., 2013; McLaughlin & Rafferty, 2014; Pellicano
& Stears, 2011).
Given the predominance of the medical model within
professional and media-based discourse, it is not particularly surprising that the second key finding was a trend
toward more medical model features across most content
areas. The trend toward more medical model features was
most apparent in regard to the source of the challenges faced
by autistic individuals. Most vloggers (34/39) attributed the
struggles they had to autism, which is consistent with findings of previous studies (McLaughlin & Rafferty, 2014).
Despite this, as in other studies (Madriaga, 2010), the identification of societal barriers was not missing in the videos,
with five vloggers attributing at least some of the challenges
they face to the privileging of nonautistic ways of functioning. Before the 1960s, with the emergence of the social
model of disability, there was little—if any—consideration
of the idea that the difficulties disabled individuals have
could also stem from the environment and not only from
their own impairments. The social model, though, more
directly addressed physical disability than it did for other
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less visible disabilities such as autism (Goodley, 2001;
McClimens, 2003). The emergence of the neurodiversity
paradigm helped fill this gap, but as noted previously, this
approach to the understanding of autism dates to the 1990s
and is still much less popular than the ubiquitous medical model of disability, which could also help to explain
the larger presence of medical model features in the
videos in the data.
Despite the trend toward more medical model features
across content areas, the third key finding was the relatively
high prevalence of neurodiversity paradigm features related
to the content areas of (a) language and (b) description of
autistic traits. In relation to language, 62% (24/39) of the
vloggers used language associated with a difference (rather
than disorder) perspective, including identity-related words and
constructions and recent coinages (e.g., Aspie, neurotypical)
that are embraced by the neurodiversity paradigm and can
be considered part of a “community-building mechanism”
(Bagatell, 2010, p. 39). Of interest, it was not unusual for
the same video to include language that was consistent
with the neurodiversity paradigm and language constructions that were indicative of the medical model. In fact,
this overlap occurred in 56% (22/39) of the videos. It can
be argued that medical-based constructions reflecting a deficit view of autism may be the “first language” that many
autistic individuals and their families are exposed to, especially when exploring diagnoses and interacting with many
professionals (Areheart, 2008; Bricher, 2000; GillespieLynch et al., 2017; Shyman, 2016). However, it is possible
that their language becomes more diversified as their experiences widen and their identities develop. The vloggers’
language choices may be considered reflective of the changing language landscape and the diversifying narratives about
autism within the autism/autistic community.
In relation to the description of autism traits, 51%
(20/39) of the vloggers presented a positive dimension of
their autistic traits and/or contradicted their alleged pervasive nature by circumscribing them to specific contexts, a
feature that can be associated with the neurodiversity paradigm (Bagatell, 2010; Strauss, 2013). As with language, it
was not unusual for the same video to include descriptions
of autistic traits as both impairments and constructive and/or
contextualized abilities. For instance, the medical model’s
“stereotyped, or repetitive motor movements, use of objects,
or speech” (APA, 2013, “Neurodevelopmental Disorders”)
is presented by some vloggers as “stimming,” an autistic
activity that takes motor and vocal forms and helps them
to calm down in stressing environments, to focus, and to
think. Eye contact is described by some vloggers as painful, distressing, scary, and useless given their difficulties to
read facial expressions. Despite this, they deny the alleged
pervasive, negative nature of their “lack of eye contact,”
arguing that they limit it to interactions with individuals
they are close to and that not making eye contact helps
them to focus on the ongoing conversation. Lastly, the
vloggers describe their sensory experiences as challenging
too, but they also present their “hypersensitivity” as an
ability to see and hear things neurotypicals cannot see or
586
hear, especially when it comes to what some of them regard as their “special interests.” In fact, the co-occurrence
of the contrasting features related with the description of
autistic traits took place most often when the vloggers discussed their interests. Although some vloggers used language such as “obsessed” and “narrow” to talk about their
interests, they also mentioned the positive side of these
“obsessions”: triggering/ enhancing creativity, facilitating
learning when academic content is presented within the
framework provided by the special interest, and leading to
academic and job niches.
The vloggers’ claims about potential “flip sides” of
their autistic traits are consistent with other studies of firstperson perspectives (Jones et al., 2003; McLaughlin &
Rafferty, 2014) and supported by a growing body of literature that portrays autism as a condition where weakness and
strengths converge, with “facility to processing” and “enhanced perception” among the latter (Pellicano & Stears,
2011, p. 275). Further support and related implications
come from the decision of companies (e.g., SAP, a German
computer software giant; The Federal Loan Mortgage
Corporation; Exceptional Minds Studios; Ford; and Microsoft) to recruit autistic personnel and even modify their
recruitment campaigns in their attempt to tap into autistic
features whose positive dimension had been long overlooked
(Austin & Pisano, 2017; Armstrong, 2010; Dador, 2017;
Kelland, 2013; Strauss, 2013).
Clinical Implications
The results of this study point to at least three different clinical implications. First is the need to familiarize
oneself with the varying views of autism held by autistic individuals, as their perspectives are an integral component
of evidence-based practice (ASHA, 2005). Understanding
the views of individuals on one’s caseload is an important
place to start. Other valuable resources are first-person
perspective research studies, autobiographical books authored
by individuals on the spectrum, and, given the large presence of autistic people in the Internet, online outlets such
as personal webpages, blogs, vlogs, discussion lists, and
social networks. Given the prevalence of the medical model
of autism within professional training, efforts to understand
the neurodiversity paradigm might be particularly warranted. Specific resources for oneself, clients, or family
members include Armstrong’s (2010) book Neurodiversity:
Discovering the Extraordinary Gifts of Autism, ADHD,
Dyslexia, and other Brain Difference; online logs such as
Erin Human: Writing, Cartooning, and Neurodiversity
Designs (https://erinhuman.com/); Rosie King’s TED talk
How Autism Freed Me to be Myself (King, 2013); YouTube
channels such as Autistic Genius (n.d.) and Neurowonderful
(n.d.); and children’s books such as All Cats Have Asperger’s
Syndrome (Hoopmann, 2006).
A second related implication is to reflect on the way
we as professionals talk about autism and to listen to how
our clients and their families talk about autism. Language
use both reflects and shapes perceptions (Brisenden, 1986).
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For example, regarding the distinction between identityfirst versus person-first language, one possibility would be
to listen for and even ask which construction an individual
person prefers (i.e., one could ask, “Do you have a preference for the phrase person with autism versus autistic person?”).
This question could serve as a gateway for discussing different views of autism using Table 3 as a reference or
handout, as deemed useful. In accordance, professional organizations such as ASHA may want to reconsider guidelines that currently require the use of person-first language,
opting instead for the more flexible guideline of using language that prioritizes what individuals prefer to be called
(see American Psychological Association, 2010), or that
more closely reflect the different positions within the autistic
community (see Pellicano & Stears, 2011). Responding to
clients and their families in ways that respect their values
and priorities is specified by ASHA’s evidence-based practice
guidelines (ASHA, 2004, 2005) and the American Psychological Association (2010).
Third and finally, data from this study suggest the importance of exploring the potential positive dimensions of autistic traits, both in research and in clinical practice. Related
to language use, phrases such as symptoms of autism can be
said to homologize autism to a disease and potentially harm
an individual’s sense of self-worth; conversely, characteristics
associated with autism could be perceived as more neutral,
less normative, and more descriptive. A general guideline is
to listen to clients and to not make assumptions about how
they may perceive autistic traits. Clinicians may also want to
consult with clients and/or their families regarding which
autistic traits, for example, special interests, could be tapped
into to facilitate participation and learning. Such information could then be used to develop supportive services and
actions. As an example from the present data set, John described how over the years his perception of his interest in
performing evolved from one of an obstacle to socialization to one of a catapult to finding his “purpose” in life.
In such a case, an SLP might assist by supporting an individual’s participation in a drama club or developing a
lunch group to support social interaction while playing
charades.
Limitations and Directions for Future Research
In closing, we would like to acknowledge three potential limitations of our study and to suggest related directions
for future narrative inquiry into the experience of autism.
First and foremost, the data here do not and were not
intended to capture the full diversity of views and perspectives from autistic individuals. In addition to limited
diversity related to specified demographics (e.g., race/
ethnicity), this study might have failed to represent more
introverted individuals who are less inclined to publish
videos about their life on the spectrum (Guadagno, Okdie,
& Eno, 2008; L. Jones & Holland, 2013). Forthcoming
narrative studies can increase representation of the different sectors of the autistic community by analyzing narratives presented in other formats (e.g., written weblogs,
autobiographies, drawings) and by purposefully sampling
underrepresented demographics (e.g., autistic individuals
of color).
A second point for consideration relates to the
varied lengths across videos studied, which could lead to
some videos being more influential in the analysis than
others. Consistent with the practice of narrative inquiry
(Polkinghorne, 1988), there was no attempt to control the
length or specified content of the videos. The study intentionally focused on all content provided at the discretion
of the vloggers, which meant that some vloggers chose to
cover more topics of interest than others. Of import, the
length of the video was not directly associated with the
density of features. For example, the longest video, authored
by Teresa, exhibited only two features of the medical model
and two features of the neurodiversity paradigm, despite
being longer than 39 min, whereas the shortest video,
authored by Porter, exhibited four features of the medical
model and two features of the neurodiversity paradigm
(see Tables 1 and 6). However, future research using a
different methodology might consider developing a survey
from the 18 contrastive features outlined in Tables 3 and 4
to directly give each participant an opportunity to respond
to each topic of interest. Such a measure might also prove
useful in clinical work, as a way to directly assess individuals’ and/or their caregivers’ view toward autism.
Lastly, future narrative inquiry could build on the
study reported here by analyzing videos posted after 2015.
Given the recent rise of the neurodiversity paradigm, one
might anticipate a great density of paradigm features in
later years. Although the data in this study did not appear
to support that assumption within the time frame studied,
the study of the evolution in the representation of autism
over time and across different cultural-linguistic landscapes
certainly merits further attention.
Acknowledgments
We wish to thank Marie Channell and Meghan Burke,
who served as members of the advising committee on this project;
our external consultant, Scott Robertson; and the research assistants
involved in this study: Grace Lee, Lauren De Vries, Stephanie
Cheng, Mindy Eng, and Amanda Moy. Special thanks to research assistants Michelle Chan, Regan Kelley, and McKenzie
Kamen for being with us from the beginning of this project to
its culmination.
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