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Multiple Autisms: Spectrums of Advocacy and Genomic Science<\/em>, by Jennifer S. Singh. University of Minnesota Press, 2016.<\/p>\n <\/p>\n Reviewed by Patrick Danner<\/p>\n Ph.D. Student, University of Louisville, Rhetoric and Composition<\/p>\n <\/p>\n Jennifer S. Singh\u2019s Multiple Autisms: Spectrums of Advocacy and Genomic Science<\/em> weaves together several moving pieces surrounding autism research over the past 40+ years. Singh takes up histories of autism sciences, their multiple attendant discourses, the political, legislative and financial elements of this evolving research, and the distinct voices of researchers, scientists, individuals on the \u201cautism spectrum\u201d and their parents. Singh\u2019s book is notable in its scope and its ability to represent that scope in five chapters.<\/p>\n Singh stakes a methodological balance early: a mix of historical and light ethnographic (primarily interview) methods, with more consequence given to the latter. Chapter 1 summarizes the early history of autism research\u2013glossing figures like Leo Kanner and Hans Asperger\u2013before turning to iterations of autism in the DSM. Though this history remains a touchstone throughout the text, a key conceptual turn comes with the introduction of Ian Hacking\u2019s concepts of \u201clooping effects\u201d and \u201cmaking up people\u201d (Singh 29). Hacking provides the text\u2019s central thrust: \u201cIn this case, autism is subject to the looping effects based on the way various parents, researchers, therapists, and physicians interact with a person diagnosed with autism. This type of interaction can in turn change or alter the classification.\u201d Here, Singh foregrounds a tension between the scientific discourses that have historically attended autism and the on-the-ground, day-to-day experiences of autistics and their families. The book\u2019s framework for this tension, emphasizing the multitude of players involved in the biotechnological and biosocial spheres of autism research, speaks to Singh\u2019s dual intellectual trajectories: as a former researcher in the private biotechnology sector and an academic sociologist of science, Singh constructs a text that oscillates between these two spheres\u2013the biotechnological and the biosocial\u2013without losing sight of the interplay between them.<\/p>\n Chapter 2 opens in the realm of the social, overviewing the involvement of parents and their lay expertise in forwarding autism genetics research. Singh cites cases such as the National Alliance for Autism Research (NAAR) and the Autism Genome Project (AGP). The cooperation among these non-profits and governmental groups (i.e. the NIH) is presented by Singh almost as an illustration of resource mobilization (be it monetary or genetic resources, or scientific expertise) and the alignment of political and scientific opportunity. Singh describes a \u201ccollective mobilization\u201d of, largely, parent-led groups and medical research organization to \u201cengage in building epistemic infrastructures [. . . .] establishing multiple partnerships, developing and transforming various levels of expertise, and building a sense of community within the field of autism genetic science\u201d (58). Such language aligns well with the sociological discourses of social action (for example, see McCarthy and Zald [1977], who apply economic language of \u201cresources\u201d to social movement activity). Moreover, Singh notes the mutually beneficial development of the publicly accessible AGP database. The AGP, in Singh\u2019s telling, creates a positive research climate by running counter to standard scientific practice: its satellite projects promote sharing of data among researchers. As one of her interviewees notes, \u201cBreakthroughs come whenever people talk to each other from different fields, and that\u2019s just the way it happens, right?\u201d (79).<\/p>\n For Singh, though, such a research climate and its robust network of players facilitates the development of potentially harmful epistemic infrastructures\u2013both discursive and material structures\u2013that don\u2019t necessarily produce desired outcomes. Chapter 3 thus returns to the biotechnological scene and the discourses that attend shifts from genomic to genetic models of thought, the ultimate failure to isolate an \u201cautism gene,\u201d and the move toward potentially fraught genomic models. The AGP, Singh illustrates, quickened the scientific consensus that no \u201cmajor common and heritable gene\u201d is definitively associated with autism. The introduction of genomic, microarray technology creates new styles of thought for researchers concerned with the root causes of autism. Rather than seeking to identify a specific gene, Singh notes a turn in the twenty-first century toward a greater acceptance of \u201cmultiple autisms,\u201d \u201cthe creation of new subgroups or categories of autism that have genetic and\/or genomic similarity,\u201d or similar \u201ccomorbid conditions not a part of the diagnosis\u201d (106). Though chapter 3 is awash in technical discourse (perhaps a bit too much so for lay readers) Singh is sure to not lose sight of the social and symbolic implications of the genomic turn for concepts of risk and biological citizenship. \u201cBy linking the cause of autism to heritable genes,\u201d she writes, \u201cparents were freed from the guilt that they did something to cause their child\u2019s autism. However, under genomic styles of thought, parents, especially mothers, are once again becoming implicated in the cause of their child\u2019s autism\u201d (119). Here we get insight to the broad conceptual value of Singh\u2019s text: in the middle of a sprawling study of the influencers of scientific research into autism is a move toward closing the conceptual gap between the research community and the larger biosocial public.<\/p>\n Concepts of biosociality and biological citizenship become increasingly consequential to the book later on. In chapter 4, Singh illustrates biological citizenship within the autism community (via Adriana Petryna and Nikolas Rose) as concerning enacted claims of individuals that merge medical and lay knowledge as well as economic disenfranchisement that could hinder access to the materials necessary to enact these claims (127). Such structural hindrances become a key component of chapter 4, particularly as Singh demonstrates that parents are more likely to submit to genetic tests if they could receive a diagnosis that allows access to social and medical services (147). Singh places biological citizenship as a question of doing what is necessary not only for one\u2019s child but to future generations as well. At its core, this vision of biological citizenship underlies much of Singh\u2019s history of autism genetic and genomic research.<\/p>\n If chapters 1-4 present a largely\u2013though not completely\u2013positive view of advances in and around autism, chapter 5 provides a bit of a counterpoint. In her interviews with adults on the spectrum, Singh notes that \u201ca major financial and scientific focus of autism research has been genetic and genomics science, with little attention to other forms of knowledge that might be more beneficial to people living with autism\u201d (153). Singh leaves implicit, I believe, what readers in the humanities would readily note: the voices present at the founding of major scientific initiatives to address autism as hereditary have largely negated the voices of those with autism. In doing so, the growing emphasis on genetic and genomic research has solidified an epistemological and discursive field of research that frames genetic testing as worthwhile only \u201cif there was a targeted medication that could alleviate exactly the symptoms of Asperger\u2019s they wanted to erase\u201d (168).<\/p>\n The book\u2019s closing is tentatively optimistic, leaning heavily on self-advocacy and new, empowering citizenship claims being carved out by adults with autism; yet Singh also notes, perhaps ominously, that current genetic and genomic frames of autism research are predominant and highly profitable. Thus, readers of Singh\u2019s book are left with urgent questions. How do we to ensure all voices, particularly patient or subject voices, are heard as interests converge around medical projects, particularly those concerned with genetics and genomics? And what are the foreseeable limits of these sciences, not just bioethically but biosocially?<\/p>\n Such lingering questions do not suggest the text is at all lacking, but testify to the range of uses Multiple Autisms<\/em> could take on. Though there is a noticeable brevity granted to two moments in the book\u2013the material impediments toward biocitizenship in chapter 4 and the entire fifth chapter, where the voices of autism are finally foregrounded\u2013such short treatment could conceivably be taken as a productive move, granting Multiple Autisms<\/em> a fruitful open-endedness, or at least a testament to the lacking presence of patient voices in medical research broadly.<\/p>\n Scholars of medical sociology, rhetoric, and broader medical humanities alike would benefit greatly from Singh\u2019s text. Issues of biocitizenship and medical(ized) communities remain central, at times evoked in ways that challenge predominant views of both. The question of genetics and biosociality\u2013the potential impact on communities building around illness when genetic and then genomic turns are made\u2013presents ripe ground for further research. Such questions could align nicely, for example, with Diane Price Herndl\u2019s work on BRCA risk. Further, Singh\u2019s placement of \u201crisk\u201d in the text, as she notes rightly that \u201crisk\u201d rarely shows up in discourses of lived experiences of autism (163), troubles notions of \u201cbiocitizenship\u201d as discussed by scholars like Herndl and J. Blake Scott. In short, though it is primarily a snapshot of a specific biotechnological and biosocial moment, Singh\u2019s book extends to major contemporary concerns about community, ethics, genetics, diagnostics, and more. Now, as biological sciences advance in areas of genomics\u2013and as the popularity of genetic and genomic databases among researchers surely grows\u2013Multiple Autisms<\/em> will prove to provide important early insights into how these changes matter for those perennially on the receiving end of these multiplying and complex diagnoses.<\/p>\n <\/p>\n Works Cited<\/strong><\/p>\n McCarthy, John D. and Mayer N. Zald. \u201cResource Mobilization and Social Movements: A Partial Theory.\u201d American Journal of Sociology. 82.6 (1977): 1212-1241.<\/p>\n Price Herndl, Diane. \u201cVirtual Cancer: BRCA and Posthuman Narratives of Deleterious Mutation.\u201d Tulsa Studies in Women\u2019s Literature. 32.2 (2013): 25-45.<\/p>\n Scott, J. Blake. \u201cMapping the HIV Test in the Discursive-Material Practices of Sex.\u201d Risky Rhetoric: AIDS and the Cultural Practices of HIV Testing.\u00a0 Carbondale: Southern Illinois UP. 2003. 90-120.<\/p>\n Singh, Jennifer S. Multiple Autisms: Spectrums of Advocacy and Genomic Science. Minneapolis: U of Minnesota P. 2016.<\/p>\n","protected":false},"excerpt":{"rendered":" Multiple Autisms: Spectrums of Advocacy and Genomic Science, by Jennifer S. Singh. University of Minnesota Press, 2016. Reviewed by Patrick Danner Ph.D. Student, University of Louisville, Rhetoric and Composition Jennifer S. Singh\u2019s Multiple Autisms: Spectrums of Advocacy and Genomic Science weaves together several moving pieces surrounding autism research over the past 40+ […]<\/p>\n