Jennifer S. Singh. Multiple Autisms: Spectrums of Advocacy and Genomic Science

Jennifer S. Singh. Multiple Autisms: Spectrums of Advocacy and Genomic Science In late September, 2016, Autism Speaks, the largest autism advocacy organization in the United States, voted to adopt a new mission statement. Rather than their previous mission of “funding biomedical research into the causes, prevention, treatments, and a possible cure for autism,” the organization proclaimed its new commitment to two fronts: supporting the needs of people with autism and their families, and “advancing research into causes and better interventions for autism spectrum disorder and related conditions” (Michelle Diamant, Disability Scoop, October 14, 2016). The organization’s shift away from research on prevention and a cure for autism towards lifespan support and research on interventions and causation, reflects a broader tension explored in Jennifer Singh’s Multiple Autisms: How has autism research benefited people living with autism? In this multi-sited ethnography, Singh explores how scientists, parents, and autistic people support, advocate for, participate in, and challenge genetic and genomic research on the unsettled nature and meanings of autism, creating spaces for biosocial communities and biological and genomic citizenships. Singh argues that understanding autism through a genomic lens has produced a narrowing of the research on autism, while consistently failing to generate knowledge that people with autism find useful. Singh’s work moves through distinct spaces where autism becomes a form of knowledge, a site for identity, and a source of experience. She begins with a short history of autism, examining changes in understandings of prevalence, causation, and diagnostic criteria since the 1940s. She moves to a history of two parent advocacy organizations, the National Alliance for Autism Research and Cure Autism Now, focusing on their advocacy for research into the biological and genetic etiology of autism. These research initiatives created a network of parents, scientists, and policy makers that established specific priorities for autism research; parents asserted a collective form of citizenship based on their experience advocating on behalf of their children. Singh argues that the failed search for a single gene for autism developed an epistemic infrastructure that led to genomic styles of thought to understand autism, facilitating and necessitating the investigation of complex gene interactions and networks. This genomic understanding of autism has both emerged from and continued to support specific pathways for autism research, as in the analysis of de novo copy number variations (CNVs) in people with autism, while questions relevant to life with autism remain underexplored. In the final two chapters, Singh shifts her focus to the implicated actors whose voices are silent in this research, notably families with a child with autism and adults with autism, seeking to examine their engagement with genetic and genomic meanings of autism. Through her analysis of interviews with parents who have donated genetic material for autism research, Singh finds that parents decide to make biological donations to the Simons Simplex Collection based on short- and long-term hope of benefits derived from the research, ranging from the immediate use of the formal assessment of autism provided for participation to the future production of effective treatments. Singh uses the parents’ reasoning of the immediate and future benefits of this research and their responsibility to participate to illustrate questions of justice in the accessibility of diagnostic and treatment services for families, and to reveal forms of biological and corporeal citizenship realized by parents through participation. In contrast to the value perceived by parents of engagement with genetic and genomic research, Singh finds adults with autism to be ambivalent or opposed to genetic research. Instead, she shows, they are concerned with the acceptance of neurodiversity and research relevant to questions of everyday life and wellbeing for people living with autism. Singh’s consideration of adults who have self-diagnosed with autism following the diagnosis of their children alongside those who were clinically diagnosed in childhood raises interesting questions about the biosocial community and citizenships produced by autism. How does the meaning of a clinical diagnosis change over a lifespan? Does self-diagnosing with autism, and consequently asserting a lack of recognition in one’s past, create a distinct identity or form of citizenship for these adults? In explaining why the autistic people, over the age of forty, whom she interviewed are all self-diagnosed, Singh makes the claim that an autism diagnosis was unavailable until its listing in the DSM-III in 1980, which ignores both the classification of autistic behavior under childhood schizophrenia in the DSM-I and DSM-II and that many children were diagnosed with autism starting with Leo Kanner’s first patients described in 1943. While the accessibility of an autism diagnosis has greatly changed over the past seventy years, Singh could have explored why these people had eluded diagnosis as part of a more robust discussion of the meanings of self-diagnosis and adult experiences of autism. Singh misses the opportunity to further explore these “multiple autisms” as shaped by experience, alongside genomic research, in her analysis of adults with autism. Still, seeking the voices of the implicated actors in autism research is a necessary and valuable complement to this history of the knowledge generation and citizenship production of genomic autism. Singh’s work provides a useful examination of the process of shaping autism into a genomic disorder, revealing the broad networks of actors, technologies, and knowledges that have made genomic styles of thought dominate autism research. The support and opposition to autism genomic science creates sites for biosocial community and citizenships, experienced by parent advocates, families with a child with autism, and autistic adults. Singh ably shows how the development of the epistemic infrastructure that has supported the transition from genetic to genomic science in autism has consequences for the meanings of autism, the research produced to study it, and the people who live with it. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of the History of Medicine and Allied Sciences Oxford University Press

Jennifer S. Singh. Multiple Autisms: Spectrums of Advocacy and Genomic Science

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Publisher
Oxford University Press
Copyright
© The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com
ISSN
0022-5045
eISSN
1468-4373
D.O.I.
10.1093/jhmas/jrx028
Publisher site
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Abstract

In late September, 2016, Autism Speaks, the largest autism advocacy organization in the United States, voted to adopt a new mission statement. Rather than their previous mission of “funding biomedical research into the causes, prevention, treatments, and a possible cure for autism,” the organization proclaimed its new commitment to two fronts: supporting the needs of people with autism and their families, and “advancing research into causes and better interventions for autism spectrum disorder and related conditions” (Michelle Diamant, Disability Scoop, October 14, 2016). The organization’s shift away from research on prevention and a cure for autism towards lifespan support and research on interventions and causation, reflects a broader tension explored in Jennifer Singh’s Multiple Autisms: How has autism research benefited people living with autism? In this multi-sited ethnography, Singh explores how scientists, parents, and autistic people support, advocate for, participate in, and challenge genetic and genomic research on the unsettled nature and meanings of autism, creating spaces for biosocial communities and biological and genomic citizenships. Singh argues that understanding autism through a genomic lens has produced a narrowing of the research on autism, while consistently failing to generate knowledge that people with autism find useful. Singh’s work moves through distinct spaces where autism becomes a form of knowledge, a site for identity, and a source of experience. She begins with a short history of autism, examining changes in understandings of prevalence, causation, and diagnostic criteria since the 1940s. She moves to a history of two parent advocacy organizations, the National Alliance for Autism Research and Cure Autism Now, focusing on their advocacy for research into the biological and genetic etiology of autism. These research initiatives created a network of parents, scientists, and policy makers that established specific priorities for autism research; parents asserted a collective form of citizenship based on their experience advocating on behalf of their children. Singh argues that the failed search for a single gene for autism developed an epistemic infrastructure that led to genomic styles of thought to understand autism, facilitating and necessitating the investigation of complex gene interactions and networks. This genomic understanding of autism has both emerged from and continued to support specific pathways for autism research, as in the analysis of de novo copy number variations (CNVs) in people with autism, while questions relevant to life with autism remain underexplored. In the final two chapters, Singh shifts her focus to the implicated actors whose voices are silent in this research, notably families with a child with autism and adults with autism, seeking to examine their engagement with genetic and genomic meanings of autism. Through her analysis of interviews with parents who have donated genetic material for autism research, Singh finds that parents decide to make biological donations to the Simons Simplex Collection based on short- and long-term hope of benefits derived from the research, ranging from the immediate use of the formal assessment of autism provided for participation to the future production of effective treatments. Singh uses the parents’ reasoning of the immediate and future benefits of this research and their responsibility to participate to illustrate questions of justice in the accessibility of diagnostic and treatment services for families, and to reveal forms of biological and corporeal citizenship realized by parents through participation. In contrast to the value perceived by parents of engagement with genetic and genomic research, Singh finds adults with autism to be ambivalent or opposed to genetic research. Instead, she shows, they are concerned with the acceptance of neurodiversity and research relevant to questions of everyday life and wellbeing for people living with autism. Singh’s consideration of adults who have self-diagnosed with autism following the diagnosis of their children alongside those who were clinically diagnosed in childhood raises interesting questions about the biosocial community and citizenships produced by autism. How does the meaning of a clinical diagnosis change over a lifespan? Does self-diagnosing with autism, and consequently asserting a lack of recognition in one’s past, create a distinct identity or form of citizenship for these adults? In explaining why the autistic people, over the age of forty, whom she interviewed are all self-diagnosed, Singh makes the claim that an autism diagnosis was unavailable until its listing in the DSM-III in 1980, which ignores both the classification of autistic behavior under childhood schizophrenia in the DSM-I and DSM-II and that many children were diagnosed with autism starting with Leo Kanner’s first patients described in 1943. While the accessibility of an autism diagnosis has greatly changed over the past seventy years, Singh could have explored why these people had eluded diagnosis as part of a more robust discussion of the meanings of self-diagnosis and adult experiences of autism. Singh misses the opportunity to further explore these “multiple autisms” as shaped by experience, alongside genomic research, in her analysis of adults with autism. Still, seeking the voices of the implicated actors in autism research is a necessary and valuable complement to this history of the knowledge generation and citizenship production of genomic autism. Singh’s work provides a useful examination of the process of shaping autism into a genomic disorder, revealing the broad networks of actors, technologies, and knowledges that have made genomic styles of thought dominate autism research. The support and opposition to autism genomic science creates sites for biosocial community and citizenships, experienced by parent advocates, families with a child with autism, and autistic adults. Singh ably shows how the development of the epistemic infrastructure that has supported the transition from genetic to genomic science in autism has consequences for the meanings of autism, the research produced to study it, and the people who live with it. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

Journal

Journal of the History of Medicine and Allied SciencesOxford University Press

Published: Jan 1, 2018

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