Multiple Autisms PDF – Spectrums of Advocacy and Genomic Science

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In the course of researching and writing this book, there have been not only many scientific, social, and cultural changes related to the meaning of autism but also developments in my own intellectual understandings and emotional growth. My commitment to investigating the biosocial worlds of parent advocates, genetic scientists, and individuals with autism and their families began in the 1990s. Like many sociology of science, technology, and medicine scholars, I started my career as a scientist. In 1993, after receiving a degree in biology, I entered the world of recombinant DNA technology at Genentech, the first biotech company to commercially market recombinant human proteins as therapeutic drugs. As a research associate in a molecular biology lab, I learned how to manipulate and combine human, animal, virus, and bacterial DNA into one molecule. We used these DNA molecules (plasmid vectors) to transfect cloned Chinese hamster ovary cells to express recombinant human proteins of potential therapeutic use. Learning, experimenting, and manipulating human DNA fascinated me but also opened the door to many questions no one in my laboratory seemed to be considering, much less the biotechnology industry. According to the biotech world, we were “saving lives,” a trope that echoed continuously during the many large and expensive celebrations held to acknowledge new recombinant proteins approved for medical use. This motto overshadowed possible questions about potential impacts on people living with disease and implications of our research for medical practices. Further, no one questioned the inequalities of the U.S. health care system that would make the molecules we were designing and manufacturing largely inaccessible to most patients.
In need of new tools to intellectually engage these concerns after living and working in the private biotechnology industry for over eight years, I went back to graduate school in 2001. In this historical moment the predominate discourse centered on hopes generated by the Human Genomic Project (HGP), an international collaborative research program developed to sequence and map all the genes of human beings. The hopes and hypes of gene-based designer drugs and cures for many diseases loomed large. The HGP also introduced new sequencing technologies and an emerging field of bioinformatics, dramatically changing the ways we were conducting science. In fact, the last project I worked on at Genentech was an effort to conduct high-throughput cloning of human genes in order to develop hundreds of recombinant cell lines expressing human proteins of “potential” therapeutic use. In a sense, I had been an active player in what my sociology PhD advisor, Adele Clarke, and her colleagues describe as biomedicalization, a multidimensional process that captures shifts in both the organization and the practices of biomedicine implemented through technoscientific innovations. Thus, my engagement with genetics started with experiences of living and working within the fusion of scientific and technological research that was reorganizing biomedicine “from the inside out.”
My interest in autism occurred by chance and was sustained by relationships with people I knew whose children were diagnosed with autism. When I began my doctoral studies in sociology at the University of California, San Francisco, I was fortunate to work with a multidisciplinary team nearby at Stanford University to investigate the ethical and social implications of conducting genetics research on neurological difference. Autism was our case study. This unique opportunity allowed me to ask questions about the social, cultural, and ethical implications of molecular research—in this instance, autism genetics. I was drawn particularly to this project because my good friend and roommate from college Laura had a son diagnosed with autism and she was deeply concerned that her second son was also showing signs. Her son was eventually diagnosed and displayed symptoms and needs different from those of her first son, including a lack of language and severe developmental delays. This created two courses of autism for Laura, her husband Rick, and their large and supportive family. Laura’s story, like many others I heard in the field, brought into focus the daily concerns and challenges families confront who are raising a child with autism: stories of anxiety and stress involved in getting a diagnosis, planning an individualized education program every year to obtain special educational services, and trying to have the enduring patience to navigate the daily needs of their children with autism. Laura’s experiences helped shape my understanding of autism not just from a science and technology perspective but also through the lived experiences of autism and the tremendous amount of love, care, and sacrifice parents must give to help their children live meaningful lives.

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