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Guest sociology professor speaks about the medicalization of autism
By Sarah Salimi ’20
February 2, 2017
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On Thursday, Jan. 26, Hamilton College’s Sociology Department hosted a lecture delivered by Dr. Benjamin DiCicco-Bloom, who holds a Ph.D. from the University of Pennsylvania and has been a visiting assistant Professor on the Hill for three years. The talk, entitled “The Medicalization of Autism: Simplifications and Distortions of the Disease Narrative,” was centered around his book, A?dults with Autism: Life in the Midst of Med?icalization, which continues the work he began for his dissertation. He undertook a longitudinal ethnographic study over the course of six years, conducting interviews with families who had adult members with autism and living in their homes for 3-8 day spans, silently observing their interactions both within and outside the domestic sphere. This study was based on individuals with severe cognitive impairments, as DiCicco-Bloom considers it vital to communicate the experiences of those who cannot do so themselves.
DiCicco-Bloom’s work deconstructs the cultural narrative surrounding autism and rigorously analyzes how this discursive framework has shaped not just social perception of this condition, but also clinical approaches to it. Particularly, he problematizes the phenomenon of medicalization, “the process by which human conditions are described and responded to as if they were a disease.” The rhetorical implications of medicalization are such that autistic individuals of all ages are generally assumed to be degenerate, disabled, and/or unwell. Besides reducing the lived experiences of people with autism in an ethically problematic, presumptuous fashion, this definition has encouraged a variety of social actors within government, institutions of academic science, the medical field, nonprofit organizations, etc. to pour all of their altruistic efforts into finding a cure, or a series of cures, for autism. According to DiCicco-Bloom, this “search for a cure, a major element of the medical narrative, undermines understanding of the actual challenges and opportunities that adults with autism, their families, and others face in securing long-term support for those with the condition.”
DiCicco-Bloom believes swapping a medicalized narrative for an ecological approach provides a fuller understanding of the richness of the lives of adults with autism. This perspective places the lives of autistic adults within their respective social contexts, focusing on the interplay between individuals and the various actors and institutions that make up their social landscapes. This frame of analysis depicts autistic adults as they truly are: nuanced individuals who seek to navigate various challenges over their lives. As such, one major benefit of the ecological approaches is that facilitating individualization reduces the cultural stigma surrounding this condition. Additionally, seeing autism embedded in a sociological world brings exposure to the lives and experiences of adults with autism, dismantling the myth that autism is a child’s condition. By shifting the dialogue towa?rds an understanding of ?individuals with autism, society will perhaps better understand the dynamics and difficulties, as well as the triumphs, that go into supporting autistic adults over their lives.
In the long term, increased awareness can shift attention towards developing public policies that ameliorate the quality, efficiency and affordability of care for people with autsim.
In employing this ecological approach, DiCicco-Bloom discovered that the research process was that much more rich and fulfilling. He uncovered two categories of challenges that autistic adults and their support networks face: barriers to communication and management concerns. Because autistic individuals often have behavioral and sensory atypicalities, it can be difficult to communicate desires, preferences, discomforts, etc. to caregivers , which results in mutual frustration. Secondly, he uncovered the difficulty of coordinating the pluralistic interactions that autistic individuals have with caregivers, a task that usually falls upon parents. Not only is this task laborious, complex, and time-intensive, but in the case of ineffective management, the health of the autistic individual might be seriously compromised (particularly because he or she is usually incapable of communicating his or her needs).
Looking forward, DiCicco-Bloom believes that bringing together medicalization literature and disabilities studies literature will put the medicalization narrative in conversation with the ecological paradigm, resulting in a more sophisticated understanding of the condition of adult autism. Ideally, it will also humanize these individuals by validating their lived experiences.