Rethinking Autism Spectrum Disorder (ASD)

Shane Cynamon, a 2019 graduate of Bridges Academy, is currently working on his PhD in Anthropology at UC Davis. This is an excerpt from his thesis, Neurodiversity in Education: Practices, Theory, Challenges. When my family sent me to elementary school, my teachers told my parents that I would never be able to write my own name. When I first entered middle school, I was told not to expect to go to college. When I applied for colleges, many told me that I should apply only to community schools because they doubted my capacity to achieve success at a four-year institution. Throughout my educational experience I have wanted to be seen and understood for my talents rather than my deficits. The opposite has been the case. I think my experience is by no means unique. The education system has trouble understanding neurodiverse students like myself. When I first entered Bridges Academy at 12 years old, I found that in some ways it was like any other school. We had sports teams, a bell system, lockers, etc. But, although we had bells, they were designed with special tones so they would not disturb students with auditory sensitivity. Although we had lockers, they were not assigned to particular students. Most importantly, the ethos of the school was different. In each class, instructors gave me explicit compliments about what I was doing well, rather than what I was failing to do properly. I noticed this right away because I had heard so few encouragements from my teachers before that point. I already knew what I was bad at; I was deeply aware of, and at times embarrassed by, my limitations. But I did not yet know what I was good at. The teachers at Bridges brought my strengths to my attention right away. Bridges Academy was established as a school to educate twice exceptional students (2e), a designation that refers to individuals who have simultaneous talent areas and learning disabilities, many within the criteria of Autism Spectrum Disorder (ASD).

Anthropological and Bio-Medical Conceptualizations of ASD

In recent years, anthropologists have become increasingly interested in autism, ASD, and ‘neurodiversity’. In her innovative research, Nancy Bagatell argues that there is a significant divide between, on the one hand, “parents, clinicians and scientists” and “the autistic community” itself on the other, as to whether autism should be thought of as “a bio-medical condition or a way of life.” To be certain, there are reasonable arguments for both a biomedical and an anthropological perspective on ASD. The merit of each position may depend on differences between “high” and “low” functioning individuals. But the biomedical paradigm is faulty in a number of ways. One of its central claims is that individuals with ASD lack the capacity for “social interactions and empathy.” Anthropologists resolutely dispute this assertion. A study by Faye Ginsburg and Rayna Rapp claims that “there is evidence of the limitless potential and neurodiversity of the human mind.” Similarly, Roy Grinker argues that anthropologists are coming to understand “that autistic people are social actors” that “share the cultural values of the communities in which they live.” For many of these individuals, their “strengths and deficits do not deny them humanity, but rather shape their humanity.” This anthropological view is part of a larger trend to treat autism as an identity rather than a disability. The biomedical view understands ASD as a disability because, it is claimed, that “normal” functioning is impaired. Physical manifestations such as ticks, lack of eye-contact, etc., are identified as behaviors that should be modified. By contrast, the anthropological view, according to Olga Solomon, emphasizes that “there exist forms of life radically different from ours that are nonetheless fully human, and that, consequently, our own future is potentially more open than we usually imagine.” A behavior that is “considered problematic in the biomedical paradigm,” says Nancy Bagatell, is “understood as a difference, and not considered a behavior that needs to be changed.” [perfectpullquote align=”left” bordertop=”false” cite=”” link=”” color=”” class=”” size=””]“The two exceptionalities are often addressed separately with little regard for the influence one exceptionality may have on the other.”[/perfectpullquote] I do not want to suggest that the biomedical paradigm is mistaken to claim that there are physical manifestations of autism which can impair individuals in ways they find problematic. I think, for example, of my own inability to manipulate my facial muscles so that I smile like others in photographs—a difficulty I have experienced my whole life despite conscious attempts to address it. However, I think that the biomedical paradigm goes awry with the implied claim that ASD is a purely disabling condition that must be fixed. In my view, the anthropological paradigm offers better tools to help temper the purely biomedical understanding of ASD by bringing attention to the non-neurobiological features of human experience. When anthropologists study various human groups, at their best they are sensitive and attentive to the different ways of being that can be identified. Their work teaches us how we might reimagine our own relationship to ourselves, to other people, to nature, etc. The anthropological approach emphasizes the value of different ways of being, rather than critiquing or being dismissive. Hence, individuals with ASD can reveal something important about the nature of learning and education in general. As a student, my differences were emphasized in ways that highlighted their benefit to me. For example, I have a psychological tendency to become extremely interested in very particular things. My instructors encouraged me to channel this tendency in a way that would be productive. When I became extremely interested in comparing different religious communities, for example, I was encouraged to produce a lengthy research report on the topic rather than fulfilling the typical obligations for the course. While I doubt my 11^th grade teacher actually read the entirely of the 50+ page comparative analysis of religious communities I somehow produced, that she permitted me to do so led me to discover that my tendency for hyper-focus can be a great benefit in the proper context. Some educators reject the claim that all biomedical manifestations of ASD are problematic. In fact, they encourage students to try and find benefits and talents even in manifestations that might seem to cause impairment at first blush. The strength of this “2e” view is that it does not deny potentially disabling biomedical conditions, but instead alters our understanding of what precisely that means. As an instructor explained, “students learn to understand the significance of their disabilities and be aware that they have a challenge, but rather than seeing it as a roadblock, they begin to consider strategies of working around their differences, or even using them in creative ways, discovering what strategies work for them.”

What is 2e?