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Disability & Society

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The autism predicament: models of autism and
their impact on autistic identity

Melissa Anderson-Chavarria

To cite this article: Melissa Anderson-Chavarria (2021): The autism predicament:
models of autism and their impact on autistic identity, Disability & Society, DOI:
10.1080/09687599.2021.1877117

To link to this article: https://doi.org/10.1080/09687599.2021.1877117

Published online: 12 Feb 2021.

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Disability & society

The autism predicament: models of autism and their
impact on autistic identity

Melissa Anderson-Chavarria

Do-PhD Program, college of osteopathic Medicine and the Department of anthropology, Michigan
state University, east lansing, Mi, Usa

ABSTRACT
Autism has presented a new frontier challenging how society
understands disability. This article reviews the historical contexts
of disability and autism along with a brief overview of the con-
cept of ‘identity’ within the context of disability, and how autism
is understood within the medical and social models of disability
considering how these models may impact autistic identity
building. Neither of these models adequately encompasses the
diverse autistic experience. Instead, a predicament model of
autism is proposed to better understand autistic experience. This
model facilitates a nuanced, multidimensional understanding of
the lived autistic experience and all of the gifts and challenges
that may go along with it. An advantage of this model is that it
moves beyond the current problematic understanding of autism
as an overly simplified low-to-high functioning ‘spectrum’;
instead, it reframes autism as an individualized, highly variable
predicament.

Points of interest

• In the medical model, autism is a medical disorder. This model has been
criticized for over-focusing on what the person cannot do instead of what
they can do.

• In a social model, autism is a different ‘way-of-being’ that results in autistic
persons being excluded from society because they often behave differently
from the ‘norm’.

• This article argues that these models do not adequately explain the vast
differences in what ‘being autistic’ can mean and suggests that a predic-
ament model of disability is an improved way of understanding autism.

• Thinking of autism as an individualized ‘predicament’ allows for more
answers to the question ‘What does being autistic mean?’

• A benefit of this model is that it disregards the ‘spectrum’ metaphor, which
ranks autistic persons on a ‘low-to-high’ functioning scale. Instead, the

© 2021 informa UK limited, trading as taylor & Francis Group
CONTACT Melissa anderson-chavarria [email protected]

https://doi.org/10.1080/09687599.2021.1877117

ARTICLE HISTORY
Received 24 April 2020
Accepted 10 January 2021

KEYWORDS
Autism; identity;
predicament;
neurodiversity; disability
models

2 M. ANDERSON-CHAVARRIA

predicament model of autism embraces the individuality of each autistic
experience without comparing it to a standard of ‘normal’.

Introduction: the riddle of the Sphinx

A popular tale in Greek mythology tells the story of Oedipus and his encounter
with the Sphinx, a monster guarding the ancient city of Thebes. With a body of a
lion and head of a woman, the Sphinx offers Oedipus the chance to enter Thebes
if he can answer her riddle: ‘What being has four legs, then two, then three?’ Living
up to his reputation, Oedipus correctly answers: ‘Man, who crawls on all fours as
a baby, then walks on two legs, and finally needs a cane in old age’. Stumped, the
Sphinx leaps to her death off the edge of a cliff and Thebes is saved. While this
myth can teach many different lessons, what goes unsaid is its linear depiction of
ability. Man is simply expected to become disabled in old age, requiring a cane
and assistance as he enters the last chapters of his life. For centuries, disability has
been widely seen as fitting within these strict confines of visible difference and
limitations in mobility. However, contemporary anthropologists of disability have
demonstrated that disability is anything but simplistic.

The subject of disability, a relatively new field of study for the anthropological
discipline, reveals disability to be a constantly changing experience that encom-
passes a vast intersectional population of individuals that each have their own
definitions of what exactly disability is and furthermore, who exactly gets to
decide that definition. Disability is a well-suited field for anthropological inves-
tigation; ‘The ethnological approach to otherness, to difference, to not of us, as
a topic of study is a uniquely compelling aspect of anthropology that makes it
a natural discipline to engage in disability studies’ (Kasnitz and Shuttleworth
2001, 2). The experience of disability in all forms lends itself to creating what Simi
Linton calls the distinct ‘cultural stuff ’ of disability. She writes ‘The cultural stuff
of the community is the creative response to atypical experience, the adaptive
maneuvers through a world configured for nondisabled people’ (Linton 1998, 5).

Disability itself has undergone an expansion of recognized incarnations in con-
temporary times due to increased awareness and research into neurological and
mental health arenas. Once invisible and therefore frequently ignored or dismissed,
neurological difference and disability are now seen as a new frontier for the anthro-
pological investigation of disability. And at the very cusp of this frontier lies a new
experience that has presented a riddle that has stumped clinicians, educators,
researchers across the disciplines, and even the individuals and families them-
selves—the riddle of autism. Autism has yet to be configured firmly within the
arena of disability studies. In fact, many argue that autism may not be a disabil-
ity at all.

Throughout this paper, I elect to utilize identity-first language when referring
to individuals with an autism diagnosis (i.e. autistic person) as opposed to per-
son-first language (i.e. person with autism). This choice is an important one to

DISAbILITy & SOCIETy 3

clarify; as Vivanti writes ‘Far from being mere semantics, this distinction has prac-
tical implications, as the words that we use to describe individuals with an autism
diagnosis influence societal perceptions, public policy, clinical practice, and
research directions’ (2020, 601). This decision was made in accordance with the
recent movement within the literature towards the destigmatization of autism
(Vivanti 2020; Gernsbacher 2017; beck 2018; Sinclair 2013; Silberman 2015; Kapp
et al. 2013). Though person-first language was first promoted as an ‘equalizer’ for
individuals with disability, over time person-first language has been implemented
unequally as children with more stigmatized disability (such as autistic children)
are more likely to be referred to in person-first language in comparison to children
with less stigmatized disability (such as blind children) (Gernsbacher 2017).
Identity-first language has also been shown to contribute towards positive iden-
tity-building practices: ‘Identifying with a disability is empirically demonstrated to
be associated with improved well-being, self-esteem, and quality of life for persons
with a wide range of disabilities, which is why identity-first language for persons
with disabilities is often preferred’ (Gernsbacher 2017, 861). Autism activist and
autistic person Jim Sinclair phrases their preference for identity-first language
poignantly when they write:

Saying ‘person with autism’ suggests that autism is something bad—so bad that it
isn’t even consistent with being a person … If other people have trouble remem-
bering that autism doesn’t make me any less of a person, then that’s their problem,
not mine. Let them find a way to remind themselves that I’m a person, without
trying to define an essential part of my personhood as something bad. I am autistic
because I accept and value myself the way I am. (Sinclair 2013, 2)

In this article, I will provide a brief overview of the historical perspectives of
disability and anthropological investigation of identity in the context of disabil-
ity. Next, I provide a brief history of autism and consider how autism has been
understood within the medical and social models of disability. Additionally, I
will discuss how each of these models of autism impacts the identity building
of autistic individuals and their families along with how these identity practices
may shape representations of autism in society. In the last three discussion
sections of this article, I propose a new way of understanding autism by using
the predicament model. This model frames autism as neither a deficit-based
disorder nor as benign social difference in the face of intolerant society. Instead,
the predicament model embraces the individualized and highly variable expe-
rience of autism to understand that autism may be at once a disability and
positive difference. Thus, the predicament model facilitates the reclaiming of
autistic identity and the subsequent positive identity building practices by autis-
tic individuals because it prioritizes a nuanced, multidimensional understanding
of the lived autistic experience and all of the gifts and challenges that may go
along with it. I propose that an advantage of the predicament model of autism
is that it answers the growing call from the autism community to move beyond

4 M. ANDERSON-CHAVARRIA

the ‘autism as a spectrum’ metaphor, which has been used widely to rank autistic
individuals by functionality. Instead of a ‘spectrum’ of overly simplified low-to-
high function, the predicament model can be used to understand autism within
and beyond medical and educational realms as an individual and complex
predicament.

Throughout this article, I utilize several different examples and perspectives
of disability that often challenge previous conceptions of ability and disability.
As research continues to add depth and detail to our understandings of neuro-
logical disability and difference, we make progress towards laying the millen-
nia-old tropes of disability to rest alongside the mythological Sphinx.

Historical perspectives on disability

In order to begin our discussion of disability, we must first acknowledge that,
as anthropologists and as a society, we have had a hard time talking about it.
There is no neutral language when discussing disability, as Jackie Leach Scully
writes ‘Language forces us to make a preemptive judgement about disability
just in order to talk about it’ (2008, 35). Due to the vast nature of disability
experiences, finding a definition for disability is a challenge. Fortunately,
anthropology as a field of inquiry is not much interested in concrete definitions,
as Whyte and Ingstad write ‘We are interested in peoples’ own experiences of
what is disabling in their world rather than in some universal definition of
disability’ (Ingstad and Whyte 2007, 11). And so, for the purposes of mutual
understanding, the term disability in this article may best be considered as the
following: ‘People are disabled if they are considered impaired and treated as
disabled. There is no absolute’ (Kasnitz and Shuttleworth 2001, 5).

Disability as a construction has been significantly influenced over time by
various overarching sociopolitical forces. Prior to the rise of biomedicine as the
dominant framework configuring health and illness, disability was often per-
ceived as an impairment due to moral or religious transgression:

Probably the most ancient and most consistently applied framing of disability has been
in religious or moral terms: the presence of a disability is perceived as a reflection,
sometimes good, often bad, on the character of the disabled individual and as a form
of divine judgement on that person’s family and community. (Pelka 2012, 5)

Except perhaps for the example of disability within the context of the elderly,
in which impairment is seen as a natural and inevitable part of the aging pro-
cess, disability has consistently been framed within what is termed by Melvin
Lerner as ‘Just World Theory’, or the idea that society functions on the grand
scale of moral justice and that individuals with disability pay penance for some
various sin or wrong-doing. Putting it bluntly, persons with disabilities for cen-
turies were viewed as ‘getting what they deserved’ (Pelka 2012; Leach Scully
2008). Consequently, this perspective carried with it the severely detrimental

DISAbILITy & SOCIETy 5

stigmatization of disabilities that persists to this day. As constructions of dis-
ability move away from religious overtones, society continues to struggle to
let go of the stigma that has marginalized individuals with disabilities for
centuries.

Disability and identity

The disability experience offers a unique take on the ever-changing nature of
identity. Identity construction by persons with disabilities is deeply influenced
by socially constructed and historically specific categories into which they are
cast (Nakamura 2006). These categories, and the subsequent identity construc-
tion, are neither permanent nor standardized. Faye Ginsburg and Rayna Rapp
speak to this as they write:

Unlike the categories of race and gender from which one can only enter or exit very
rarely and with enormous and conscious effort, disability has a distinctive quality:
It is a category anyone might enter through aging or in a heartbeat, challenging
lifelong presumptions of stable identities and normativity … no social category is
exempt from the disabling experience. (Ginsburg and Rapp 2013, 55)

There have been several definitions of identity utilized within the anthropo-
logical discipline; one of the more straightforward definitions of identity being
‘the way a person understands and views himself and is often viewed by others’
(Holland 1998). However, constructions of identity are often more complex. Mary
bucholtz discusses identity practices, writing:

Identities emerge in practice, through the combined effects of structure and agency.
Individuals engage in multiple identity practices simultaneously, and they are able
to move from one identity to another. This process is not entirely unconstrained as
speakers may end up reproducing hegemonic identities more often than resisting
them. (bucholtz 1999, 209)

Identity construction is complex in the setting of disability, as ‘Identity is a
complicated and multi-faceted thing and people with impairments assimilate
them into their identity in different ways’ (Martin 2012, 18). Identity building
has become a critical point of research as persons with disabilities too fre-
quently find that society constructs their identity for them in othering fashions.
This ousting from the normative can have negative consequences on the build-
ing and maintenance of identity. Emily Martin discusses how individuals with
disabilities, in particular mental illness, are denied a full identity as she writes
‘People living under the description of manic depression or any other mental
illness are automatically demoted to less than fully human personhood by
virtue of their putative irrationality’ (2007, 233). Jean E. Jackson describes the
destabilizing forces following stigmatization in the context of disabling
chronic pain:

6 M. ANDERSON-CHAVARRIA

because severe chronic pain can dominate one’s life and, if not seen as a ‘real’ condi-
tion, can carry such moral opprobrium, it can easily threaten the ability to maintain
identity. Pain sufferers must attempt to reconcile these powerfully negative impacts
on personal self-esteem with their understanding of themselves. (Jackson 2000, 7)

Full recognition of a person’s identity is frequently prevented in the context of
disability due to a phenomenon called ‘identity spread’, ‘where the person’s indi-
viduality—not only their personality, but also other aspects of their identity such
as gender, sexuality, and ethnicity—can be ignored, as the impairment label
becomes the most prominent and relevant feature of their lives, dominating inter-
actions’ (Shakespeare 2006, 71). The impact of destabilizing forces and identity
spread can be mitigated by identity construction practices such as group identity
building. Molly bloom examines group identity formation by a team of wheelchair
basketball players as she writes ‘This was a community with shared ideologies
about their disabilities and the value of their non-normative bodies, shared embod-
ied practice, like playing wheelchair basketball, and shared linguistic practices …
these each contributed to a shared sense of group identity among disabled ath-
letes’ (bloom 2019, 124). Positive identity building practices such as these are
essential in part because:

In affirming a positive identity of being impaired, disabled people are actively repu-
diating the dominant value of normality. The changes for individuals are not just a
transforming of consciousness as to the meanings of ‘disability’, but an assertion of the
value and validity of life as a person with an impairment. (Swain and French 2000, 578)

Autism: a brief history

Autism, or Autism Spectrum Disorder (ASD), as both a biomedical, psychological
diagnosis and as a lived experience, has been the focus of much anthropological
work in large part due to its turbulent history. Autism was first defined within
medical literature as Early Infantile Autism in 1943 by Dr. Leo Kanner in his work
Autistic Disturbances of Affective Contact, describing what would go on to be
known as the hallmark characteristics of autism such as social withdrawal, ste-
reotypic movements, and language delay (Kanner 1943). In 1944, child psychi-
atrist Hans Asperger would publish Autistic Psychopathy in Childhood, in which
he would describe four Russian children with what would later be known as
Asperger’s Syndrome, a high-functioning subset of ASD that is identified pri-
marily by difficulty in normative social interaction and sensory sensitivity
(Asperger 1944). Individuals with Asperger’s were differentiated from classically
autistic individuals due largely to their lack of language delay (Silberman 2015).

Autism’s history is marked by a pervasive pattern of parental—mostly mater-
nal—blaming for their child’s seemingly diminished development. Mothers of
autistic children were termed ‘refrigerator mothers’ whose cold and austere
demeanor stunted the emotional and physiological development of their child
(bettelheim 1967). Though this hypothesis was dismissed in the United States

DISAbILITy & SOCIETy 7

in the 1980s and replaced with a biomedical framework (Langan 2011), the legacy
of this blame continues. As Chloe Silverman writes ‘… the experience of autism
in the 20th and early 21st centuries is difficult if not impossible to disentangle
from ideas about the nature of a ‘good childhood’ and beliefs about normal
patterns of socializations, development, and relationships’ (Silverman 2012, 14).
As the characteristics and behaviors that today are recognized as an autism
phenotype began to be increasingly medicalized, these children were often mis-
diagnosed with childhood schizophrenia (Grinker and Cho 2013; Silberman 2015;
Silverman 2012). In the 1990s, the schizophrenia diagnosis fell out of favor; ‘The
concept of childhood schizophrenia fell into disuse not because children’s forms
of distress changed, but because the idea of what constituted schizophrenia and
autism changed’ (Grinker and Cho 2013, 47) and the use of the term Pervasive
Developmental Disorder (PDD) began to be widely utilized (Silverman 2012;
Silberman 2015). Today, autism is largely defined by biomedical and psycholog-
ical frameworks. According to the Diagnostic and Statistical Manual of Mental
Disorders (DSM V ), ASD is a neurodevelopmental disorder consisting of: (1) per-
sistent deficits in social communication and social interaction such as a lack of
or diminished social-emotional reciprocity, diminished verbal and nonverbal
communication, and difficulty in developing and maintaining social relation-
ships, (2) restricted and repetitive behaviors, and (3) hyper- or hypo-sensitivity
to sensory input (American Psychiatric Association 2013).

Autism as medical

Situated within the DSM V, a psychiatric reference text that carries significant
social capital and prestige within the biomedical community, autism for the
moment has firmly secured its place within medical systems as a neurodevelop-
mental disorder under the purview of biomedical authority. This perception of
autism as a medical condition is by and far the most popular view of the pheno-
type and situates the disorder neatly into a medical model of disability, which
identifies disability as defect or deficit with biological origins; Leach Scully writes
‘In a medical framework, what I will call the ‘bad thing’ of disability—whatever it
is that makes being disabled undesirable—is connected in a linear fashion to a
clinically identifiable abnormality’ (2008, 19). Various neurobiological theories
regarding the etiology of autism have been put forth ranging from excess neuron
overgrowth (Courchesne et  al. 2007) to a dysfunctional mirror neuron system
(Dapretto et al. 2006). Immunologically based and environmental toxicity-based
hypotheses have also been examined (Maezawa et al. 2011; Meltzer and Van De
Water 2017; Silverman 2012). Recent studies have examined the potential role
of the gut microbiota in the development of autism and associated gastrointes-
tinal symptomatology (Kelly et al. 2017; Li and Zhou 2016; Fattorusso et al. 2019).
One very controversial biomedical theory proposed a potential link between
autism and vaccination. Though promptly retracted for falsification of data, a

8 M. ANDERSON-CHAVARRIA

paper published by Wakefield in The Lancet ignited a controversy that continues
to rage to this day concerning the vaccine-causation theory for autism and the
growing anti-vaxxer movement (Wakefield et al. 1998; Silverman 2012). Sharon
Kaufman has examined how the vaccine controversy and the mystery surrounding
autism etiology have begun to reveal cracks in biomedical authority concerning
autism, writing:

because it is a mutable object of knowledge, with unknown specific etiology, and
because the well-being of children and families is at stake, autism has become a pivotal
figure in conversations about the truth claims of biomedical science and about what
constitutes evidence and credible knowledge. (Kaufman 2010, 12)

The medicalization of autism is not a singular occurrence, as the dominance
of Western biomedicine within our society has prompted medical and pharma-
ceutical intervention to be the frontline treatment for many conditions and dis-
orders, such as Attention Deficit Hyperactivity Disorder (ADHD) and bipolar
Disorder, that were not previously considered as subject to medical authority
(Phillips 2006; Armstrong 2010; Martin 2007). The reader should not misconstrue
this as an argument against the beneficial medical and pharmaceutical innova-
tions that have often been life-saving and have facilitated the health and increased
quality of life for many living with these conditions, but instead as an understand-
ing of how societal and political conditions have ‘set the stage’ for the ease in
which autism was incorporated into the medical vocabulary. Of the many social
factors that have shaped the medical modeling of autism, three stand out within
the literature as pivotal. The first is the fact that ASD, as described in the DSM V,
is often not the sole diagnosis for autistic individuals. Frequently, autism is a
phenotype that is associated with several different genetic conditions and syn-
dromes, i.e. Fragile X syndrome, Rett Syndrome, and Tuberous Sclerosis Complex
(Gürkan and Hagerman 2012; Maezawa et al. 2011; Moss and Howlin 2009). Many
autistic individuals, especially in early childhood, also require treatment for var-
ious medical co-morbidities such immunological dysfunction, seizure disorders,
sleep disorders, and gastrointestinal disorders (Meltzer and Van De Water 2017;
bauman 2010). A second factor that has facilitated the medicalization of autism
has been the coinciding rise of geneticization within Western biomedicine. First
introduced into the literature by epidemiologist Abby Lippman in the early 1990s,
geneticization is defined as ‘the growth of genetics as a means to account for
and explain health and disease and the process by which biological conditions
constitute social definitions of normality and abnormality’ (1991, 18). Following
the success of the Human Genome Project, the boom of genetic sequencing
prompted a surge in the search for genetic causation of diseases (Fitzgerald 2017;
McGuire 2016; Leach Scully 2008). With the backing of the biomedical community,
genetic research carries social implications as ‘genetic explanations create socially
embedded dynamics between categories and kinds of individuals’ (Arribas-Ayllon
2016, 135). A third factor has been the unusual dependence on parents of autistic

DISAbILITy & SOCIETy 9

children in the treatment of autism within the medical model. brendan Hart
argues that parents of autistic children have ‘inherited an ethical imperative’ to
be translators and advocates for their children in a world that often lacks resources
to facilitate their success (Hart 2014). Audrey Trainor discusses the laborious role
parents assume when serving as educational advocates for their children, writing
‘Parents may find it necessary to accept major responsibilities, including under-
standing legal technicalities, for insuring the implementation of individualized
education programs (IEPs) and protecting their educational rights’ (Trainor 2010,
245). Parents of autistic individuals have been crucial in the global spread of the
medical model for autism from predominantly the United States and Europe, as
parent-run autism awareness associations have been able to permeate the inter-
national autism community much faster than scientific and medical associations
(Chamak 2008; brezis et al. 2015).

Critics who object to the medicalization of autism argue that the biomedical
community hyper-focuses on a deficit-view of autism; or what autistic individuals
are missing rather than what they have great aptitude for. Anthropologists and
parents of an autistic child Hillary Haldane and David Crawford note that “… the
discourse of autism has some revealing peculiarities. At bottom, it is a ‘discourse
of lack’, a way of classifying a lack of expected behaviors and the presence of
some unexpected ones” (2010, 26). Researchers have argued that the medical
model of autism ignores characteristic traits of autistic individuals such as highly
attuned visual-spatial awareness and unique strengths in pattern recognition
(Armstrong 2010). Temple Grandin, an animal scientist, acclaimed author, and
autistic individual, speaks to this as she writes ‘I would not want to lose my ability
to think visually. I have found my place along the great continuum’ (Grandin
1995, 60–61). Grandin has also been a key voice in another major criticism of
the autism medical model, which notes that the biomedical community has
historically and contemporarily dismissed the point of view of autistic individuals
themselves (Grandin 1995; Sarrett 2016). The Autistic Self-Advocacy Network …