Journal of the Society for
AUTISM: RETHINKING THE POSSIBILITIES 1
Autism: Rethinking the Possibilities
Abstract This special issue of Ethos brings together the work of scholars from multiple disciplines including
anthropology, occupational science, and education. The authors share two main goals. First, this interdisciplinary
collection of articles highlights the importance of rethinking research on autism. Each article encourages move-
ment away from dominant biomedical discourses that focus largely on symptoms to a more phenomenological and
ethnographic stance that addresses experiences of living with autism. The second goal is to rethink possibilities for
social interaction and participation for people with autism. In this introduction, we brieﬂy review current biomedical
accounts of autism as a disorder that affects social cognition and explore the importance of rethinking these
assumptions. We suggest that this discussion is particularly well suited for psychological anthropology’s concerns
with the psychological and the social in an individual’s experience and place in society. [autism, ethnographic re-
search, intersubjectivity, neurodiversity, sociality]
This special issue of Ethos, ‘‘Rethinking Autism, Rethinking Anthropology,’’ has two goals.
First, the articles and commentaries encourage scholars to rethink the possibilities for
research on autism from an interdisciplinary, social science perspective. The second goal is
to rethink the possibilities of social engagement for those affected by autism, their family
members, therapists, and others. Such a perspective is steadfastly ethnographic, and it
resonates with psychological anthropology’s concerns with interconnections between the
psychological and the social in an individual’s experience and position in society.
Beginning with its anthropological origins in Malinowski’s (1961) Argonauts in the Western
Paciﬁc, ethnography has been used to document and understand the Other. ‘‘Like translation,’’
Vincent Crapanzano (1986:51) writes, ‘‘ethnography is a . . . somewhat provisional way of coming
to terms with the foreignness of . . . cultures and societies.’’ Many preceding ethnographic enter-
prises, Mary Louise Pratt (1986) reminds us, deﬁned themselves against adjacent and antecedent
discourses to ‘‘usurp their authority and correct their abuses’’ (Pratt 1986:27), especially when
these abuses involved describing ‘‘the native as a distorted, childish caricature of a human being’’
The ethnographic enterprise of describing and understanding autism faces a similar chal-
lenge; grappling with the dominant biomedical discourse that casts symptoms of autism and
their consequences for individuals and their families in a categorically deﬁcit-based frame-
work. Keeping in line with the experience-near (Geertz 1973) orientation to the study
ETHOS, Vol. 38, Issue 1, pp. 1–7, ISSN 0091-2131 online ISSN 1548-1352. & 2010 by the American Anthropological
Association. All rights reserved. DOI: 10.1111/j.1548-1352.2009.01078.x.
of social behavior across cultures, the ethnographic studies presented in this issue seek to
rethink and reimagine autism from a phenomenological, rather than a biomedical, point
Interdisciplinary ethnographic studies on autism are especially timely now that neuro-
science has transitioned from the ‘‘Decade of the Brain’’ (e.g., Andreasen 2001)1 into the
new millennium that began with the completed sequencing of human genome and the
beginning of functional genomics (e.g., Collins and McKusick 2001). Basic research on
autism has been inﬂuenced by this scientiﬁc direction as evidenced in biomedical attempts
to capture the heterogeneity in sociocommunicative and cognitive manifestations of autism
in purely genetic terms. Consequently, there is less and less attention in autism research
to phenomena that cannot be studied at the neurobiological or molecular level, such as
human experience, social interaction, and cross-cultural variation. This situation is made
even more complex by the expanding boundaries of the autism spectrum and its increasing
prevalence. With medical anthropologist Byron Good (1997), we believe that, ‘‘the behav-
ioral sciences in general, and cross-cultural and ethnographic studies in particular, have
become more rather than less important’’ (Good 1997:230) at the present time. It is this
perspective that makes the special issue particularly relevant to the contemporary state of
Moreover, although biomedicine claims ‘‘culture-free’’ objectivity, it is subject to culturally
and institutionally organized practices of imagination and interpretation (DelVecchio Good
2007). Yet the images and interpretations of autism produced by these practices are cast
as objective truths and permeate spheres of social life where cultural notions of autism are
reproduced and recirculated. Dawn Eddings Prince, an anthropologist diagnosed with
Asperger’s disorder as an adult, succinctly describes the impact that these images have on the
popular understanding of autism:
When most people think of autism they think of violent, unreachable people in worlds
completely of their own making, worlds without keys, feeling no empathy, lacking
imagination, and unavailable to the deepest of human needs for contact and love. Having
autism is the worst fate parents can imagine befalling their children and they dread its im-
pact on their families. [Prince this issue]
This conceptual framing of autism has profoundly negative consequences for persons with
autism and their families, and for the design of educational programs and therapeutic
interventions. However, recent ethnographic studies (e.g., Bakan et al. 2008; Bagatell 2007;
Kremer-Sadlik 2004; Ochs 2002; Ochs and Solomon 2004, 2005; Ochs et al. 2001, 2004,
2005; Sirota 2004; Solomon 2004, 2008; Sterponi 2004) have challenged this view of autism,
offering accounts of how persons with autism meaningfully engage in a range of ordinary
everyday activities with other people. This special issue is intended not so much as a theory-
driven dialogue among two opposing views, but as a multilogue of theories and voices, of
scholarly research and personal experience, that intertwine perspectives intended to advance
understanding of autism.
AUTISM: RETHINKING THE POSSIBILITIES 3
The interdisciplinary social science perspective is especially germane to autism research in
light of the history of autism as a clinical diagnosis. Since its original description (Kanner
1943), theories of autism have undergone multiple and fundamental transformations. The
syndrome itself has shifted from being considered a rare psychogenic condition to being
classiﬁed as a neurobiological disorder with prevalence as high as one in 110 children
(Centers for Disease Control 2009). Autism is currently viewed in biomedical terms as a
neurodevelopmental disorder that affects social cognition. Much attention has been given to
cognitive accounts of autism as a disorder of ‘‘theory of mind,’’ meaning the ability to infer
another person’s emotions, beliefs, thoughts, and intentions (e.g., Baron-Cohen et al. 1985).
Other cognitive theories of autism that continue to receive attention include the executive
function theory (e.g., Russell 1997), and weak central coherence theory (e.g., Frith 1989;
Frith and Hill 2004; Happe 1994). The latter suggests that autism disrupts a natural human
propensity to construct ‘‘central coherence,’’ that is, to seek higher-level meaning in a wide
range of stimuli. Other affected areas identiﬁed in experimental cognitive psychological
studies are impaired joint attention, imitation, and imaginative play (e.g., Charman and
Because biomedical accounts have primarily focused on the challenges of affected individ-
uals evinced in laboratory tasks, there is tension between biomedical perspectives on autism
and the everyday experiences of individuals with autism and their families. Speciﬁcally, this
tension emerges as the experiences, discourses, and ideologies of persons with autism and
their families contrast with the experiences, discourses, and ideologies of doctors, therapists,
teachers, and others who provide a range of services in institutional settings. The tension
commonly arises at the interface of the personal and the institutional, between theories of
competence and theories of disability, and among orientations toward measurable clinical
change when contrasted with notions of a ‘‘good,’’ meaningful life.
In the ﬁrst article in the collection ‘‘Regarding the Rise in Autism: Vaccine Safety Doubt,
Conditions of Inquiry, and the Shape of Freedom,’’ Sharon Kaufman considers the ways
medical practitioners and parents co-construct, negotiate and contest precarious notions of
vaccine safety and autism risk. Seeking to understand and describe the cultural work that is
being done by the parents and clinicians, Kaufman examines the vagaries of the
vaccine–autism connection and explores parental awareness of vaccines’ safety and anxieties
about vaccines’ danger.
In the two articles that follow, by Nancy Bagatell and by Dawn Eddings Prince, the authors
illuminate how individuals with autism negotiate and construct, in their everyday activities
and discourses, what it means to be affected by autism in the social world and to live a
meaningful life. In her article, ‘‘From Cure to Culture: Transforming Notions of Autism,’’
Bagatell explores the idea of autism as a way of being. From the perspective of occupational
science, an interdisciplinary academic discipline that examines everyday human activity and
its impact on health and well-being, Bagatell considers an autistic community, a group of
autistic adults who, through their discourse, lexicon, and activities are challenging tradi-
tional, biomedical interpretations of autism. Examining historical trends, she shows how the
widening of the autism spectrum, the advent of the self-advocacy movement, and the ex-
plosion of technology, have enabled individuals to claim a voice that could potentially
transform societal conceptions of autism.
In ‘‘An Exceptional Path: An Ethnographic Narrative Reﬂecting on Autistic Parenthood
from Evolutionary, Cultural, and Spiritual Perspectives,’’ Prince offers an emic view of
autism. She vividly describes her sense of connection to the natural world and her profound
sense of disconnection from the human world. From being taught about social connected-
ness by gorillas at the zoo to becoming a parent and raising a child, Prince illustrates how
autism can be viewed as a unique way of being in the world and not merely as a medical
condition. Prince’s contribution offers a highly personal, reﬂexive insider or ‘‘native’’ point
of view, a view informed by her training as an anthropologist. This stance allows for a possi-
bility of something rarely accomplished in autism research: an interaction of various inter-
subjectivities foundational to the ethnographic enterprise (Jacobs-Huey 2002).
In the next four contributions the authors offer detailed analyses of social interaction to
show how children with autism participate in everyday activities and practices. Ochs and
Solomon propose a notion of ‘‘autistic sociality,’’ an observable social phenomenon that has
important implications for an anthropological understanding of human sociality. The
authors outline a ‘‘domain model’’ of sociality that identiﬁes particular situational condi-
tions under which orderly social coordination increases. On the basis of this model, they
proffer an ‘‘algorithm for autistic sociality’’ that promotes social engagement of children
with autism in particular interactional contexts.
Sirota, in her article, ‘‘Narratives of Distinction,’’ takes readers into the everyday lives
of children with autism as they interact with parents at home. Sirota provides compelling
examples from video and audio data of the social competence of children with autism and
suggests that through an apprenticeship of sorts, children with autism use narratives of their
experience as ‘‘technologies of self’’ (Foucault 1988).
In the article ‘‘How to Go On: Intersubjectivity and Progressivity in the Communication of
a Child with Autism,’’ Sterponi and Fasulo draw on conversational analysis and develop-
mental pragmatics perspectives to examine the conversations of a ﬁve-year-old boy with
autism, his parents, and a therapist. The authors consider the complex relation between
intersubjectivity (as both a condition for communication and a product of communication),
and progressivity (as sequentially based structural resources that afford continuity in
conversation) faced by a child with autism and his interlocutors. This analysis of verbal so-
cial behavior captures complexities, contradictions, and pitfalls as human beings with and
without autism pursue conversational continuity and understanding.
In the last article of the issue, ‘‘What a Dog Can Do: Children with Autism and Therapy
Dogs in Social interaction,’’ Solomon identiﬁes the dynamics of child–dog–other interac-
tions that support relatively successful participation of children with autism in everyday
activities. Analyzing video- and audio-recorded interactions, parental interviews, and stories
AUTISM: RETHINKING THE POSSIBILITIES 5
written by the children about their experiences with the dogs, Solomon describes how the
inclusion of specially trained dogs mediates the social engagement and interaction of chil-
dren with autism and their family members and peers.
Taken together, the collected articles encourage readers to rethink autism by embracing its
complexity, from the personal experience of those diagnosed with autism and their families
to issues of healthcare and educational policy. Although the contributions are situated in
several branches of anthropology (cultural, existential, linguistic, medical, and psychologi-
cal), in occupational science, and in education, they share a vision of autism as socially
constructed across institutional, ideological, sociohistorical and social-interactional contexts.
Thus, these contributions demarcate a new interdisciplinary domain of inquiry that examines
autism as a contestable and contested sociocultural as well as biomedical construct. The unifying
interest of the contributors to this special issue is in considering how autism ﬁgures in the lived
experiences of individuals who have been diagnosed with the condition, in the life worlds of
families, and in the production and contestation of knowledge within and across communities
and institutions. The special issue’s interdisciplinary perspective seeks to capture both the locally
situated contexts of individual and family experiences and the broader sociohistorical and insti-
tutional discourses that offer often conﬂicting theories of etiology, intervention, and possible
We are grateful to Mary Lawlor and Richard Grinker (both this issue) for agreeing to
comment on the articles included here. As they note the collection is intended to impact
awareness of autism with a view toward better treatment across lifespan. Although the col-
lection problematizes notions of sociality, intersubjectivity, and the construction of self, the
articles advance (inter)disciplinary approaches that will improve the analysis of these often
taken for granted constructs more generally. These insights gained from research endeavors
elucidating autism promise new theoretical purchase on selves and socialities. We also hope
the issue will further advance research on autism by involving multiple perspectives and
theoretical orientations, and that this interdisciplinarity will more ﬁrmly bridge social science
and biomedical knowledge.
OLGA SOLOMON is Research Assistant Professor, Division of Occupational Science and
Occupational Therapy, University of Southern California.
NANCY BAGATELL is Assistant Professor, Department of Occupational Therapy, Quinni-
Acknowledgments. We would like to thank Gelya Frank, Ph.D., for introducing the idea of this special issue and
for her guidance along the way.
1. In 1990, President George H. W. Bush signed a proclamation designating the last decade of the 20th century as
the ‘‘Decade of the Brain.’’ This proclamation put forth ‘‘to enhance public awareness of the beneﬁts to be derived
from brain research’’ through ‘‘appropriate programs, ceremonies, and activities’’ marked an acceleration of
neuroscience research (Bush 1990). Although autism was not mentioned speciﬁcally in the proclamation as one of
the disorders of the brain warranting further study, it was during this decade that funding for autism research began
2001 Brave New Brain: Conquering Mental Illness in the Era of the Genome. Oxford: Oxford University Press.
Bakan, Michael, Benjamin Koen, Fred Kobylarz, Lindee Morgan, Rachel Goff, Sally Kahn, and Megan Bakan
2008 Following Frank: Response-Ability and the Co-Creation of Culture in a Medical Ethnomusicology
Program for Children on the Autism Spectrum. Ethnomusicology 52(2): 163–202.
2007 Orchestrating Voices: Autism, Identity and the Power of Discourse. Disability and Society 22(4): 413–426.
Baron-Cohen, Simon, Alan Leslie, and Uta Frith
1985 Does the Autistic Child Have a ‘‘Theory of Mind’’? Cognition 21(1): 37–46.
Bush, George H. W.
1990 Presidential Proclamation 6158. The Decade of the Brain 1990–2000 (July 17, 1990). Electronic
document, http://www.loc.gov/loc/brain/proclaim.html, accessed May 18, 2009.
Centers for Disease Control and Prevention
2009 Prevalence of Autism Spectrum Disorders - Autism and Developmental Disabilities Monitoring Network,
United States, 2006. Surveillance Summaries, December 18, 2009. MMWR 2009; 58(SS10): 1–20.
Charman, Tony, and Simon Baron-Cohen
1994 Another Look at Imitation in Autism. Development and Psychopathology 6(3): 403–413.
Collins, Francis S., and Victor A. McKusick
2001 Implications of the Human Genome Project for Medical Science. Journal of the American Medical
Association 285(5): 540–544.
1986 Hermes’ Dilemma: The Masking of Subversion in Ethnographic Description. In Writing Culture: The
Poetics and Politics of Ethnography. James Clifford and George E. Marcus, eds. Pp. 51–76. Berkeley:
University of California Press.
DelVecchio Good, Mary-Jo
2007 The Medical Imagery and the Biotechnical Embrace: Subjective Experiences of Clinical Scientists and
Patients. In Subjectivity: Ethnographic Investigations. Joao Biehl, Byron Good, and Arthur Kleinman,
eds. Pp. 362–380. Berkeley: University of California Press.
1988 Technologies of the Self. In Technologies of the Self. Luther H. Martin, Huck Gutman, and Patrick H.
Hutton, eds. Pp. 16–49. Amherst: University of Massachusetts Press.
1989 Autism, Explaining the Enigma. Oxford: Blackwell.
Frith, Uta, and Elizabeth L. Hill
2004 Autism: Mind and Brain. Oxford: Oxford University Press.
1973 The Interpretation of Cultures. New York: Basic Books.
Good, Byron J.
1997 Studying Mental Illness in Context: Local, Global, or Universal? Ethos 25(2): 230–248.
Happe, Francesca G. E.
1994 Autism: An Introduction to Psychological Theory. Cambridge, MA: Harvard University Press.
2002 The Natives are Gazing and Talking Back: Reviewing the Problematics of Positionality,
Voice, and Accountability among ‘‘Native’’ Anthropologists. American Anthropologist 104(3): 791–804.
1943 Autistic Disturbances of Affective Contact. Nervous Child 2: 17–50.
2004 How Children with Autism and Asperger Syndrome Respond to Questions: A Naturalistic Theory of
Mind Task. Discourse Studies 6(2): 185–206.
1961 Argonauts in the Western Paciﬁc. London: Routledge and Kegan Paul.
AUTISM: RETHINKING THE POSSIBILITIES 7
2002 Becoming a Speaker of Culture. In Language Acquisition and Language Socialization: Ecological
Perspectives. Claire Kramsch, ed. London: Continuum.
Ochs, Elinor, Tamar Kremer-Sadlik, Olga Solomon, and Karen G. Sirota
2001 Inclusion as a Social Practice: Views from Children with Autism. Special issue, ‘‘Social Interaction: The
Dual Development of Communication and Social Relationships,’’ Social Development 10(3): 399–419.
Ochs, Elinor, Tamar Kremer-Sadlik, Karen Gainer Sirota, and Olga Solomon
2004 Autism and the Social World: An Anthropological Perspective. Discourse Studies 6(2):
Ochs, Elinor, and Olga Solomon
2004 Introduction: Discourse and Autism. Special Issue, ‘‘Discourse and Autism,’’ Discourse Studies 6(2): 139–
2005 Practical Logic and Autism. In Companion to Psychological Anthropology. C. Conerly and Robert
Edgerton, eds. Pp. 140–167. Oxford: Blackwell.
Ochs, Elinor, Olga Solomon, and Laura Sterponi
2005 Limitations and Transformations of Habitus in Child-Directed Communication. Discourse Studies 7(4–
Pratt, Mary Louise
1986 Fieldwork in Common Places. In Writing Culture: The Poetics and Politics of Ethnography. James
Clifford and George E. Marcus, eds. Pp. 27–50. Berkeley: University of California Press.
1997 Autism as an Executive Disorder. Oxford: Oxford University Press.
Sirota, Karen G.
2004 Positive Politeness as Discourse Process: Politeness Practices of High-Functioning Children with Autism
and Asperger Syndrome. Discourse Studies 6(2): 229–251.
2004 Narrative Introductions: Discourse Competence of Children with Autistic Spectrum Disorders. Discourse
Studies 6(2): 253–276.
2008 Language, Autism and Childhood: An Ethnographic Perspective. Special issue, ‘‘Language and the Brain,’’
Annual Review of Applied Linguistics 28(1): 150–169.
2004 Construction of Rules, Accountability and Moral Identity by High-Functioning Children with Autism.
Discourse Studies 6(2): 207–228.