Claire Laurier Decoteau
University of Illinois at Chicago
The 2015 Junior Theorist Award Lecture
“I can tell you the exact date that I began to think of myself in the first-person plural …” (Pollan 2013)
This story is about a group of parents of children with autism in the Somali diaspora who think of themselves in the multiple, and how this constitutes both a postcolonial critique of Western biomedicine and a radical rethinking of the relationship between the social and biological body. There is growing statistical evidence that Somali refugees and immigrants have higher prevalence rates of autism spectrum disorder (ASD) than some other ethnic/racial groups (Barnevik-Olsson et al. 2008; University of Minnesota 2013). Somalis in North America call autism the “Western disease” because there is no word for autism in the Somali language and because, they claim, it does not exist in Somalia (Brisson-Smith 2009).
Explanations from an Epistemic Community of Somali Refugees
Adar Hassan has two sons with severe autism – the younger can speak a little and the elder is non-verbal; both have severe behavioral disturbances and suffer from gastrointestinal problems, difficulty sleeping, and skin disorders. But she does not believe that autism is genetic, because no one in her family has ever seen such behaviors or symptoms before, and, unlike Americans, Somalis know their ancestors “like a hundred fathers back” (Interview, 6/12/14). In addition, Adar explained to me, the rates of autism prevalence have climbed steadily since the early 1990s. When her first son was diagnosed with autism in 2001, the rates were 1 in 150, and now they are 1 in 68 (CDC, 2014). As Adar explains, “that can’t be explained genetically. Genetics don’t explode … They know even if they don’t say it. There’s something environmental …” (Interview, 6/12/14).
Instead, Adar believes that the change of diet that accompanied her own forced migration from Somalia to Toronto changed her gut microbiota, which then affected her children during pregnancy and birth. There are several environmental and agricultural differences between life in Somalia and life in Canada which Adar believes influenced her children’s gut bacteria: Vitamin D deficiencies from changing exposure to sunlight, the lack of raw milk, the overly sanitized environments in North American schools and hospitals, and agricultural production that relies on genetic modification, fertilizers, and pesticides. In addition, Adar, like many Somali women in North America, gave birth through Caesarean section because Western doctors are unfamiliar with labor in women who have been circumcised. “Babies born by Caesarean … do not acquire their mother’s vaginal and intestinal microbes at birth,” which can lead to difficulties in the development of their immune systems (Pollan 2013). Both of Adar’s children were also given several courses of antibiotics during their infancies, which she believes destabilized their already fragile gut microbiome. As another member of the Toronto epistemic community explains, antibiotics are overprescribed: “We’re consuming a lot of antibiotics … some of the daycares, they are requesting if the child is sick, they will say you can’t bring him back unless he’s on medications … The parents … request the antibiotics so the child could go back to school so they can go to work or attend to another child or whatever … We have a culture of antibiotic abuse that’s going on” (Fatima Kediye, Interview, 6/10/15).
The Microbiome-Autism Connection
According to several scientists researching connections between intestinal flora and autism, immigration from Somalia to Canada could shift a population’s disease profile. For example, Jeremy Nicholson, Chair of Biological Chemistry at the Imperial College of London, explains: “Diseases have changed in the last 60 years … and certain disorders like autism correspond to the country’s industrial development, brought about in particular by antibiotics” (ABC Four Corners, 2012). One theory is that antibiotics, especially repeated doses at a young age, can wipe out the diversity of bacteria living in the gut, rendering children vulnerable to attack by hostile or pathogenic bacteria, which can in turn affect synoptic development in the brain.
Microbiologists are fond of saying that we are only 10 percent human. As Michael Pollan explains in a recent New York Times article: “for every human cell that is intrinsic to our body, there are about 10 resident microbes … To the extent that we are bearers of genetic information, more than 99 percent of it is microbial. And it appears increasingly likely that this ‘second genome,’ as it is sometimes called, exerts an influence on our health as great [as] and possibly even greater than the genes we inherit from our parents. But while your inherited genes are more or less fixed, it may be possible to reshape, even cultivate, your second genome” (Pollan, 2013).
One hundred trillion bacteria live on our skin, in our mouths, and in our intestines. And we have a symbiotic relationship with the species that call us home – they protect us from infection, help us digest food, and keep our cells powered. But if something wipes out their diversity or stops it from developing in the first place, we are at greater risk for all kinds of illnesses. As Martin Blaser explains in his book, Missing Microbes (2014), the rise of “modern plagues” such as obesity, childhood diabetes, food allergies, cancer, celiac disease, colitis, and autism stems from “the disappearing microbiota.” He argues that the loss of diversity within the microbiome impacts our metabolism, immunity and cognition. Blaser worries “that with the overuse of antibiotics as well as some other now-common practices, such as Caesarean sections [and the widespread use of sanitizers and antiseptics], we have entered a danger zone, [a] no-man’s land between the world of our ancient microbiome and an unchartered modern world” (39).
Adar Hassan noticed that both of her autistic sons crave highly processed, carbohydrate-based foods, but when they are given low-carb diets, their behavior improves (ABC Four Corners 2012). She found the same to be true of dairy products. When she listened to Dr. Derrick MacFabe’s presentation on pathways from gut bacteria to brain inflammation, she finally heard a causal theory that made sense to her (Ibid). The “gut bugs,” MacFabe explains, crave carbohydrates. Children eating high-carbohydrate diets are feeding the bugs, which then negatively affect their brain development: “When we eat, we feed microbes. It is possible that these bacteria produce compounds that go back to the brain and alter behaviors, make us eat more of what it takes them to live, and produce behaviors that help spread them around” (MacFabe 2009). This is a distinct ontology of the body that suggests that colonies of bacteria living within us control our behavior, some of which negatively affect our health.
Rethinking the Body through the Microbiome
I am intrigued by the “gut bug” theory of autism because it challenges us to rethink the relationship between the self and the social. Nikolas Rose (2013) urges us to critically interrogate the relationship between the human and social sciences in order to reconceptualize the body, or vitality, as a complex, aggregate capacity that is always situated within a specific locale or environment. According to the ontology of the body offered by microbiome research, the social resides inside of our bodies, in the form of bacterial colonies that alter the human form. We are literally inhabited by the social. Michel Foucault and Judith Butler have forcefully argued that our bodies are the materialized effects of social discourses. Prohibitive discourses are written onto the body, are performed by the body, or are incorporated into our bodily contours through the psychoanalytic process of melancholia. And yet, here is a body that defies boundaries, as the social world and our particular social history in that world are reflected by trillions of bacteria changing us from the inside out. And these bacteria have desires – they crave carbohydrates that make them grow. Here, discourses are not merely written onto the body by external social actors, but written by the body, by its internal coinhabitants – millions of microbes pursuing their own individual and colonial self-interests, in contestation with other microbes. This is a truly multiplicitous theory of the body – we are, after all, only 10% human. You get your microbiome largely from your mother, but it takes three years for your microbiome to stabilize and it can change throughout your life. Your diet, environment, romantic partners, health practices, hobbies, and travels are all reflected in your microbiome. Your bacterial colonies reflect the contingency of your social position and practices. I believe this is the kind of body Deleuze and Guattari had in mind in Anti-Oedipus.
For Deleuze and Guattari, a “body without organs” is a totalizing fiction. It makes us believe that our bodies are a unified system, a site where productions are recorded in such a way that it seems natural and appears as if the body is the origin of desire and production: “an enchanted recording or inscribing surface that arrogates to itself all of the productive forces and all of the organs of production, and that acts as a quasi cause by communicating the apparent movement (the fetish) to them” (1983/2000: 11-12). The body without organs operates like Lacan’s objet petit a – it is produced through a misrecognition of ourselves as whole, complete beings, which disavows the chaos, multiplicity and fragmentation of our bodies as real, desiring machines. However, for Deleuze and Guattari, unlike for Lacan, desire cannot be reduced to lack. And this means that lack does not come from “somewhere deep down inside,” from some primordial separation from the mother, but lack is forced onto people in the social world. For Deleuze and Guattari, desire’s source is not lack but production. And the body without organs is precisely this organ-ization which is overcoded in such a way as to prevent the proliferation of desire. This body without organs, then, forces us to disavow the disparate desiring machines that ‘hang together’ as a body, but without coherent organization. The microbiome theory of the body challenges this view of a body without organs, by representing instead a series of organisms without a body, a set of desiring machines that continually produce new connections and segmentations. Gut bacteria reflect the wholly social nature of our corporeal constitution. We are social beings – both inside and out. And it is only totalizing fictions, stories of genetic predetermination, for example, which make us believe that our bodies are coherent systems with a control tower and a DNA roadmap.
Emma Allen Vercoe, a microbiologist at the University of Guelph who works closely with the Somali parents in Toronto, argues that gut bacteria theories remain on the fringe of mainstream science because they challenge not only the biomedical ontology of the body but the whole system of biomedical research and care. She explained to me that the clinical trial – the gold standard of medical research – relies on the notion of the homogenous, standard patient. Clinical trials presume that people will respond to treatment in similar ways. Microbiome research, instead, presumes that each individual is wholly unique. This is why downing vats of yoghurt or taking standardized probiotic formulas often do not work – they are not attuned to your particular microbiota, which is a signature of you and you alone, reflecting your precise biography and location.
In A Thousand Plateaus, Deleuze and Guattari discuss the relationship between what they refer to as nomad science versus state science. Nomad science is usually “barred, inhibited or banned by the demands and conditions of state science” (1987/2000: 362), and this has certainly been the case with the gut bacteria theory of autism causation. It remains underfunded and underexplored. And yet, for many Somali parents, it captures their experiences of raising children with autism and provides clues toward therapies that help them manage symptoms. Rather than nomad science, perhaps we can see microbiota research as “refugee” science.
For Adar and the other members of her epistemic community, the microbial theory also serves as a postcolonial critique. Not only does it suggest that the ills of late capitalist modernity have given rise to a series of ‘modern plagues,’ autism among them, but it also captures their own experiences of alienation and marginalization: the forced immigration brought on by civil war in Somalia and the health inequalities they have faced as poor, Black, Muslim refugees in a major Western urban metropolis. Their experiences and structural positionings are reflected in the gut bacteria theory of autism causation, but so too is their resistance.
ABC Four Corners. 2009. Autism Enigma. Aired on August 27, 2012. Produced by Christopher Sumpton, Robin Benger and Marion Gruner.
Barnevik-Olsson, Martina, Christopher Gillberg, and Elisabeth Fernell. 2008. “Prevalence of Autism in Children Born to Somali Parents Living in Sweden: A Brief Report.” Developmental Medicine and Child Neurology 50: 598-601.
Blaser, Martin J. 2014. Missing Microbes: How the Overuse of Antibiotics is Fueling our Modern Plagues. New York: Henry Holt and Company.
Brisson-Smith, Allen. 2009. “An Outbreak of Autism, or a Statistical Fluke?” New York Times, March 16, p. D1.
Centers for Disease Control (CDC). 2014 “Prevalence of Autism Spectrum Disorder among Children Aged 8 Years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010.” Available online at http://www.cdc.gov/mmwr/pdf/ss/ss6302.pdf (accessed December 12, 2014).
Deleuze, Gilles and Félix Guattari. 1983/2000. Anti-Oedipus: Capitalism and Schizophrenia, University of Minnesota Press.
______. 1987/2000. A Thousand Plateaus: Capitalism and Schizophrenia. University of Minnesota Press.
MacFabe, Derrick. 2009. “Examining Gut-Brain Links in Autism.” Available online at http://vimeo.com/21631824 (accessed June 25, 2013).
Pollan, Michael. 2013. “Some of My Best Friends are Bacteria.” New York Times Sunday Magazine, May 15, pp. MM36ff.
Rose, Nikolas. 2013. “The Human Sciences in a Biological Age.” Theory, Culture & Society 30(1): 3-34.
University of Minnesota. 2013. Minneapolis Somali Autism Spectrum Disorder Prevalence Project. Co-Funded by the Minnesota Department of Health, Centers for Disease Control, National Institutes of Health and Autism Speaks. Project documents available online at http://rtc.umn.edu/autism/#project_docs. (accessed December 17, 2013).