Multiple Autisms: Spectrums of Advocacy and Genomic Science by Jennifer S. Singh (review)

If one were to assess the progress genetic research has made in the last two decades, the results would be ambiguous. On the one hand, scientists certainly have greatly advanced our understanding of the complex and subtle interactions between gene groups and the genome as a whole and the subtle interactions with environmental influences. Yet the therapeutic benefits gained from this research still remain severely limited. We are barely any closer to the much-hyped cures and therapeutics promised by genetic medicine than we were ten or twenty years ago. Autism is a case in point, as Jennifer Singh's Multiple Autisms, Spectrums of Advocacy and Genomic Science makes clear. Over the last two decades, billions of dollars have been spent on searching for the genetic underpinnings of autism, yet they have yielded hardly any therapeutic or diagnostic benefits.

To understand why scientists and parent activists nevertheless continue to pour resources into researching genetic models of autism, Singh analyzes the self-reinforcing styles of thought that guide three different sets of actors (and interview partners): scientists involved in autism genetics research, parents who push for or participate in studies, and, finally, adults on the autism spectrum who have remained more skeptical about the benefits of genetic research. These actors, Singh argues, form distinct biosocial communities, tied together by a shared interest in identifying the biological underpinnings of autism spectrum disorders, by sharing blood samples or medical information, and by notions of biological or social relatedness. Like many studies of current biomedicine, Singh's work relies heavily on interviews and participant observation to capture the mindsets of scientists, parents, and individuals with autism. These three sets of interviews and investigations, however, remain largely unconnected. Certainly, this reflects the highly divided state of the autism world, yet one would have wished for a more comprehensive analysis.

Chapter 1 covers briefly—and rather too briefly for the uninitiated reader—the history of autism research and the shift from psychosocial to biomedical, and, in particular, genetic models of causation. Since the late 1970s in particular, the diagnostic boundaries of autism have shifted greatly, expanding to include an ever greater number of individuals with an ever more varied range of traits. Thus, one now speaks of an autism spectrum—or, in Singh's words, of multiple autisms—rather than of one clearly defined condition. This, of course, has significant consequences for genetic research, as chapter 2 makes clear. Singh traces the establishment of a biomedical research network as the concerted effort of scientists and a few dedicated parent-activists. The book's strength lies in pointing to the changes and tensions these collaborations have brought about. The development of genetic databases for autism demonstrates how conflict over access eventually led to new structures of collaboration, thus enabling the large-scale research enterprises characteristic of the biomedical sciences today. The search for one or several single genes causing autism characterized these earlier collaborations; that search soon proved to be futile because of the immense complexity of gene regions apparently involved in causing autism-like traits. Thus—and this is one of Singh's main arguments—scientists moved from a genetic to a genomic style of thought, no longer looking for single causative genes but rather at the complex interplay between different gene regions. This research has challenged older models of autism as a trait passed on from parents to children and instead has pointed to the importance of de novo mutations in those autism affects. Yet, as Singh points out, many research participants—families with autistic children—maintain older notions of inheritance that tie together families and generations, creating a sense of community.

The final chapter explores the lives of adults on the autism spectrum, and is, overall, the book's weakest part. As Singh points out, the vast majority of autism funding goes into basic research, and, to a lesser degree, into childhood services, leaving the needs and interests of autistic adults...