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“Asperger’s syndrome does not exist”: the limits of brain-based identity discourses around Asperger’s syndrome and autism in Italy

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Abstract

Brain-based identities, especially around autism, have received much attention in recent literature on biopolitics through concepts such as brainhood, cerebral selfhood, and neurochemical selves. This article complicates conversations about self and brain by presenting ethnographic data about Italian autistic youth. It demonstrates the complexities of the ways in which youth draw on brain discourses and autism identity discourses. While youth and their parents did sometimes talk about autism as related to selfhood, and autism as related to brains, and even brainhood as related to selfhood, they rarely spoke of all three concepts together. Youth’s use of autism identity discourses proved sporadic, and instrumental. Italian youth did not mobilize biopolitical modes of engagement the same way as scholars have described in other settings, suggesting important cross-cultural variation in how people relate to notions of self and brain linked to broader differences in Western biomedicines. This study provides a rich description of identity discourses employed by autistic Italian youth, demonstrating how they can use autism as a tentative basis for seeking collective identity and social interaction while negotiating skepticism about its meaning for individual identity. Throughout, the brain plays a minimal role, resisting neuro-essentialist or neuro-hegemonic conceptualizations of autism.

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Notes

  1. Single quotes indicate quotations from fieldnotes and interviews that were not audio-recorded. Double quotes indicate quotations from audio-recorded interviews. Brackets within direct quotes indicate words added for clarification, original Italian, or words substituted for proper names. Brackets around ellipses indicate removed words or phrases. Parentheses indicate phrases that were inaudible or when I was doubtful of my transcription. Quotations are my own English translation but original Italian is available upon request. Some translations have been improved since they were originally published in Cascio (2015). Some of the quotations are originally in English, but due to the small number of participants who spoke English, these quotations are not reported separately so as to avoid identifying the speaker.

  2. Once a parent disagreed with the staff evaluation that the youth could not participate, but I followed the staff’s determination per my research protocol and did not conduct an interview. One youth I asked declined, whose parent was interviewed.

  3. Two additional participants had parents nearby, but not sitting through the interview. Four parents had a staff psychologist present during the interview, except the part that asked about the specific service; two parent interviews had other family members present, but again not as participants and any comments were not transcribed.

  4. Parents similarly discussed “pure,” “true,” or “classic” autism (see Cascio 2015).

  5. This sort of switching into English was somewhat common, at least when I was present.

  6. 46% of instances coded “neurologization” were also coded “somatic individuality.” 34% of instances coded “somatic individuality” were also coded “neurologization.”

  7. In 65 instances of the neurologization code, 30 were also coded as somatic individuality.

  8. I also discuss this quotation in Cascio (2017).

  9. Only one youth uses neurologization discourses at all, to say that he wants to stop taking a certain medication because “I read online that as side effects, they reduce cerebral functions.”

  10. For other examples of scholars who rejected, problematized, or modified biosociality based on the “bio,” see (Beck and Niewohner 2009; Herzfeld 2005; Marsland 2012; Roberts 2007, 2008).

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  1. College of Medicine, Central Michigan University, 1280 E. Campus Drive, CMED 1432, Mt. Pleasant, MI, 48859, USA

    M. Ariel Cascio

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Acknowledgments

The research described in this paper was funded by an Institute of International Education Fulbright Grant (academic year 2012–2013), a Dissertation Research Assistance Grant under the supervision of Eileen-Anderson-Fye, a Baker Nord Center for the Humanities Graduate Research Grant at Case Western Reserve University, and an Arts & Sciences Dissertation Fellowship at Case Western Reserve University. I would like to thank many people and organizations who made this research possible, including Professor Roberto Malighetti and the Università degli Studi di Milano-Bicocca, Cascina Rossago, Cooperativa Aurora 2000 and the Spazio Autismo, Cooperativa I Percorsi, Cooperativa Spazio Aperto Servizi, Fondazione Istitute Sacra Famiglia ONLUS, Gruppo Asperger ONLUS, and Progetto Filippide; and of course everyone who participated in this study. Thank you also to Alice Larontonda for transcription assistance and to Alice Larontonda, Cecilia Maffei and Enrico Valtellina for help with Italian translation and proofreading. All errors remain my own. This paper draws heavily from my dissertation entitled “Psychiatry and Subjectivity: The Case of Autism Spectrum Conditions in Italy.” A very early version of these ideas was presented at the 2015 American Anthropological Association Annual Meeting. Finally, special thanks go to Kathryn Hale and Julia Knopes for providing critical feedback on earlier drafts of this manuscript.

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Cascio, M.A. “Asperger’s syndrome does not exist”: the limits of brain-based identity discourses around Asperger’s syndrome and autism in Italy. BioSocieties 16, 196–224 (2021). https://doi.org/10.1057/s41292-020-00191-8

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