Contours and Constraints of an Autism Genetic Database: Scientific, Social, and Digital Species of Biovalue

Tecnoscienza, 2019

This paper examines the scientific, social and digital processes that shape multiple forms of biovalue evident in the development, participation and use of the Simons Simplex Collection (SSC), the largest autism genetic databases in North America. Based on interviews with SSC study participants and investigators, as well as a content analysis of a range of SSC materials, this empirical study makes visible the various contours of biovalue that are entangled between scientists who use this data for autism research, families who donate their blood and medical information to gain access to needed resources, and digital networks of exchange that make hybrid connections between and among these emergent biosocial communities. By examining the production of and interactions between scientific, social and digital forms of biovalue this paper highlights the constraints embedded within this heterogeneous assemblage to offer a critical account of the limits of the SSC and subsequent knowledge production. I contend that while the multi-dimensionality of biovalue built into the fabric of the SSC structure creates various contours of biovalue, it structurally constrains the types of production and knowledge flows that are allowed to be conceived and generated.

Autism Disparities: A Systematic Review and Meta-Ethnography of Qualitative Research

Qualitative Health Research, 2019


Racial, ethnic, and socioeconomic disparities associated with autism spectrum disorder (ASD) are evident across many service domains including access to early assessment, diagnosis, and therapeutic interventions. To better understand the complex social and structural factors contributing to these disparities, this article offers a systematic review of peer-reviewed qualitative research conducted from 2010 to 2016 in the United States that investigates autism disparities experienced by marginalized communities. Based on these criteria, we identified 24 qualitative research studies and conducted an analysis using meta-ethnography and an intersectional interpretive lens. We identified three interdependent themes contributing to autism disparities, including familial, cultural, and structural barriers. Omissions in the literature were also evident, including a lack of research on underserved adults with ASD and the gendered inequities of caregiving. We discuss the implications of our findings and offer new questions that take an intersectional approach using qualitative research to investigate autism disparities.

Contextualizing the Social and Structural Constraints of Accessing Autism Services among Single Black Female Caregivers

International Journal of Child Health and Human Development, 2019 

Autism spectrum disorder (ASD) affects 1 in 59 children and represent the fastest growing developmental disorder in the United States. However, disparities in ASD evaluation, diagnosis, and services exist based on social factors such as race, ethnicity, and socioeconomic status. To date, limited qualitative research has been conducted that focuses on the experiences of single Black female caregivers of children with ASD who live in low-income, minority, and underserved communities in the United States. Objective: This study aimed to understand interrelated social and structural factors that place children and their families with limited resources at risk of delayed ASD diagnostic services and limited therapeutic services. Methods: The study design is based on in-depth interviews conducted with single Black female caregivers of children with ASD who rely on state Medicaid health insurance in metro Atlanta, Georgia (N = 21). A grounded theory analysis of the interviews was used to systematically identify themes and multi-level barriers to ASD services. Results: Despite improvements over the past several decades in diagnosing children with ASD, this study identified multiple and interacting social, economic, and residential barriers to accessing ASD services. Two themes were identified that contextualize barriers to ASD services: bureaucratic processes and geographic location of services. These barriers were compounded by the consequences of being a single female parent, including having limited income, employment options, and social capital. Practical recommendations to break the cycle of ASD service disparities are discussed.

Black Villages, Empathy and Collective Value: Principles that Guide an Intersectional Approach.

Catalyst: Feminism, Theory, Technoscience 3(1). 2017 DOI:

fdfdfdAs an academic who is socially situated through having immigrant grandparents from Mexico and India, who is the first in her family to get a college degree, and who has achieved a position in a scholarly field in which she is vastly underrepresented, I take my work seriously. I strive to investigate questions that can have an impact on people’s lives. Thus, my current research investigates the intersectional and structural inequities embedded in the stories of Black and Latino caregivers of children with autism. Over the past year, I have had the privilege of meeting caregivers who have shared with me their complicated pathways to getting an autism diagnosis and accessing services in an unequal society. These voices offer a significant alternative to the dominant face of autism parenting in the US, which typically portrays white, married, and upper-middle class families who have the time, money, and resources to engage and fulfill various social and biomedical accountabilities to help their children. To aid the understanding of these multi-dimensional and complex narratives of autism parenting, I am using the principles of Black Lives Matter to serve as an epistemological framework to guide my analysis. Especially important are the BLM’s principles of diversity, black families, empathy, black women, black villages, loving engagement, intergenerational, restorative justice, and collective value. ( Black Lives Matter, 2017). For example, the narratives of caregivers who I have interviewed and learned from consist of alternative family structures; single mothers or single grandmothers who care for their children alone or in unison, often with limited resources of time, money, knowledge, or access to healthcare. The principles of Black Lives Matter help me to better understand the structural constraints that shape the experience of Black women who are navigating the labyrinth of services needed for children with autism. 

Multiple Autisms: Spectrums of Advocacy and Genomic Science

University of Minnesota Press, 2016.

imageIs there a gene for autism? Despite a billion-dollar, twenty-year effort to find out—and the more elusive the answer, the greater the search seems to become—no single autism gene has been identified. In Multiple Autisms, Jennifer S. Singh sets out to discover how autism emerged as a genetic disorder and how this affects those who study autism and those who live with it. This is the first sustained analysis of the practices, politics, and meaning of autism genetics from a scientific, cultural, and social perspective.

Parenting Work and Autism Trajectories of Care

Sociology of Health and Illness, Volume 38(7), 2016

See a virtual abstract of Parenting Work and Autism Trajectories of Care


This study investigates the work and care associated with raising child with disabilities in the United States. Based on in-depth interviews with parents who have a child with autism, it develops the notion of parenting work and trajectories of care to investigate how parents navigate and coordinate the challenges of getting an autism diagnosis, obtaining educational services, and re-contextualizing the possibilities for the future. I argue that parents embody a complex mix of love, hope, and responsibility in parenting work and trajectories of care that expands temporal and social elements of illness work and illness trajectories initially developed by Anselm Strauss and colleagues. This type of parenting work changes over time and is influenced by social structural forces and relationships in which the care takes place. The re-articulation of these analytic tools also begins to untangle the intricate mix of both medical and social models of disability that parents embrace and continuously negotiate. This study demonstrates how parents accept the medical model of disability by seeking and pushing for a clinical autism diagnosis and subsequent treatments, while at the same time challenge the limits placed on their children by providing them opportunities, possible futures, and a sense of personhood.

Vanishing Diagnosis of Asperger’s Disorder

Sociology of Diagnosis (Advances in Medical Sociology, Volume 12), 237-259, 2011.

This chapter discusses the proposed changes in the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), which eliminates Asperger’s disorder (AD) and replaces it as “autism spectrum disorder.” Implications of these changes on the identity of adults with AD and the influence of everyday life experiences will be addressed.

Methodology/approach – This research is based on 19 interviews with adults diagnosed or self-diagnosed with AD. Central themes surrounding issues of identity and everyday life experiences were determined using grounded theory approaches.

Findings – This study demonstrates how the diagnosis and self-diagnosis of AD is fused with individual identity. It also shows how Asperger identity is positively embraced. The proposed changes to eliminate AD in DSM-V threaten these assertions of Asperger identity, which could potentially enhance stigma experienced by people with AD. Regardless of its removal, Asperger identity must be considered within the broader context of people’s everyday lives and how experiences in social interaction and communication can be strong agents of identity construction.

Social implications – The proposed changes to eliminate AD in DSM-V is a social issue that will impact individuals with Asperger’s and their families, as well as health-care professionals, health insurers, researchers, state agencies, and educational providers.

Originality/value of paper – This chapter offers a unique insight into identity construction based on the diagnosis and self-diagnosis of AD.

Narratives of Participation in Autism Genetics Research

Science, Technology and Human Values, Published online before print July 3, 2014.

This article provides empirical evidence of the social context and moral reasoning embedded within a parents’ decision to participate in autism genetics research. Based on in-depth interviews of parents who donated their family’s blood and medical information to an autism genetic database, three narratives of participation are analyzed, including the altruistic parent, the obligated parent, and the diagnostic parent. Although parents in this study were not generally concerned with bioethical principles such as autonomy and the issues of informed consent and/or privacy and confidentiality of genetic information, a critical analysis reveals contextual bioethics embedded within these different narratives. These include the negotiations of responsibility that parents confront in biomedical research, the misguided hope and expectations parents place in genomic science, and the structural barriers of obtaining an autism diagnosis and educational services. Based on these findings, this article demonstrates the limits of a principle-based approach to bioethics and the emergent forms of biological citizenship that takes into account the social situations of people’s lives and the moral reasoning they negotiate when participating in autism genetic research.

Trends in US Autism Research Funding

Journal Autism and Developmental Disorder39(5), 788-795, 2009.

This study shows that the number of autism research grants funded in the US from 1997 to 2006 significantly increased 15% per year. Although the majority of projects were concentrated in basic science (65%) compared to clinical (15%) and translational research (20%), there is a signific
ant decrease in the proportion of basic research grants per year and a significant increase in the proportion of translational projects per year. The number of translational projects funded by the National Alliance for Autism Research and Cure Autism Now increased significantly, whereas the number of clinical projects significantly increased for the National Institutes of Health. In conclusion, this study demonstrates the shifting landscape of autism research from basic science to clinical and translational research.

Interacting and paradoxical forces in neuroscience and society

Nature Review Neuroscience8(February), 153-159, 2007.

Discoveries in the field of neuroscience are a natural source of discourse among scientists and have long been disseminated to the public. Historically, as news of findings has travelled between communities, it has elicited both expected and unusual reactions. What scientific landmarks promote discourse within the professional community? Do the same findings achieve a place in the public eye? How does the media choose what is newsworthy, and why does the public react the way it does? Drawing on examples of past challenges at the crossroads of neuroscience and society and on a case study of trends in one neurogenetic disease, autism, we explore the dialectical forces interacting in scientific and public discourse.