Skip to main content

Immeasurability, Biology, Identity. Citizenship and the Meaning of a Diagnostic Label for Adults Diagnosed with Autism

  • Chapter
  • First Online:
Citizenship in Organizations

Abstract

Today, more people are diagnosed with a psychiatric condition than ever before. Classifying a certain type of behavior or a pattern of ‘otherness’ under a specific diagnostic label has as a result that the classification itself shifts and expands, and also alters how people view themselves. This is what Ian Hacking called ‘the looping effect’. With regard to autism, the vast majority of research up until now has focused on finding biological explanations for the phenomenon. It is far less known, however, what it means to live with such a diagnosis. A diagnosis has potentially a large impact on how people reflect on their own identity, and on their relations with others in a professional or familial environment. For our research, we have interviewed 22 adults with a diagnosis of autism, in order to try to understand how people experience and evaluate themselves while having a diagnosis, how they experienced the diagnostic process itself and how this diagnosis helps them to overcome problems in their daily lives. How do they cope with the difficulties they experience in their relations, their work, and more in general, how do they participate in society? How do they perceive themselves as being different from or the same as others? Are there differences in how they cope with this ‘otherness’ before and after being diagnosed? Do they benefit from being diagnosed, and how do they combine this with potential disadvantages? In this chapter, we discuss the issue of otherness and classification, using themes and quotes from the interview study.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 84.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 109.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 109.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • American Psychiatric Association. 2013. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Arlington: American Psychiatric Publishing.

    Book  Google Scholar 

  • Eyal, Gil, ed. 2010. The Autism Matrix: The Social Origins of the Autism Epidemic. Cambridge/Malden: Polity.

    Google Scholar 

  • Fletcher-Watson, Sue, Fabio Apicella, Bonnie Auyeung, Frederique Bonnet-Brilhault StepankaBeranova, Ricardo Canal-Bedia, Tony Charman, et al. 2016. Attitudes of the Autism Community to Early Autism Research. Autism. doi:10.1177/1362361315626577.

  • Frith, Uta. 2003. Autism: Explaining the Enigma. 2nd ed. Malden: Blackwell Publishing.

    Google Scholar 

  • Frith, U., and F. Happe. 1999. Theory of Mind and Self-Consciousness: What Is It Like to Be Autistic? Mind and Language 14 (1): 1–22.

    Article  Google Scholar 

  • Goffman, Erving. 1963. Stigma. Notes on the Management of Spoiled Identity. Upper Saddle River: Prentice Hall.

    Google Scholar 

  • ———. 1990. Asylums: Essays on the Social Situation of Mental Patients and Other Inmates. Vol. 1. New York: Anchor Books.

    Google Scholar 

  • Hacking, Ian. 1996. The Looping Effects of Human Kinds. In Causal Cognition, ed. Dan Sperber, David Premack, and Premack Ann James, 351–383. Oxford: Oxford University Press. http://www.oxfordscholarship.com/view/10.1093/acprof:oso/9780198524021.001.0001/acprof-9780198524021-chapter-12

  • ———. 2000. How We Have Been Learning to Talk about Autism: A Role for Stories. Metaphilosophy 40 (3–4): 499–516.

    Google Scholar 

  • ———. 2001. The Social Construction of What? Cambridge, MA: Harvard University Press.

    Google Scholar 

  • ———. 2009. Humans, Aliens & Autism. Daedalus 138: 44–59. doi:10.1162/daed.2009.138.3.44.

    Article  Google Scholar 

  • Huws, Jaci C., and S.P. Jones Robert. 2013. ‘I’m Really Glad This Is Developmental’: Autism and Social Comparisons – An Interpretative Phenomenological Analysis. Autism. doi:10.1177/1362361313512426.

  • Kanner, L. 1949. Problems of Nosology and Psychodynamics of Early Infantile Autism. The American Journal of Orthopsychiatry 19 (3): 416–426.

    Article  Google Scholar 

  • Kenny, Lorcan, Caroline Hattersley, Bonnie Molins, Carole Buckley, Carol Povey, and Elizabeth Pellicano. 2015. Which Terms Should Be Used to Describe Autism? Perspectives from the UK Autism Community. Autism. doi:10.1177/1362361315588200.

  • Klintwall, Lars, Anette Holm, Mats Eriksson, Lotta Höglund Carlsson, Barnevik Martina Olsson, Asa Hedvall, Christopher Gillberg, and Elisabeth Fernell. 2011. Sensory Abnormalities in Autism. A Brief Report. Research in Developmental Disabilities 32 (2): 795–800. doi:10.1016/j.ridd.2010.10.021.

    Article  Google Scholar 

  • Matson, Johnny L. 2016. Handbook of Assessment and Diagnosis of Autism Spectrum Disorder. New York: Springer Science+Business Media.

    Book  Google Scholar 

  • Markram, Henry, Tania Rinaldi, and Kamila Markram. 2007. The Intense World Syndrome – An Alternative Hypothesis for Autism. Frontiers in Neuroscience 1 (1): 77–96. doi:10.3389/neuro.01.1.1.006.2007.

    Article  Google Scholar 

  • Masschelein, Anneleen, and Leni van Goidsenhoven. 2016. Posting Autism. Online Self-Representation Strategies in Tistje, a Flemish Blog on ‘Living on the Spectrum From the Front Row’. In Disability and Social Media: Global Perspectives, ed. M. Kent and K. Ellis. New York: Routledge.

    Google Scholar 

  • McCrimmon, A., and K. Rostad. 2014. Test Review: Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) Manual (Part II): Toddler Module. Journal of Psychoeducational Assessment 32 (1): 88–92. doi:10.1177/0734282913490916.

    Article  Google Scholar 

  • McGeer, Victoria. 2004. Autistic Self-Awareness: Comment. Philosophy, Psychiatry, and Psychology. Special Issue 11 (3): 235–251.

    Article  Google Scholar 

  • Mottron, Laurent, Michelle Dawson, Isabelle Soulières, Benedicte Hubert, and Jake Burack. 2006. Enhanced Perceptual Functioning in Autism: An Update, and Eight Principles of Autistic Perception. Journal of Autism and Developmental Disorders 36 (1): 27–43. doi:10.1007/s10803-005-0040-7.

  • Nadesan, MajiaHolmer. 2005. Constructing Autism: Unravelling the “Truth” and Understanding the Social. London/New York: Routledge.

    Google Scholar 

  • Nicolaidis, Christina, Dora M. Raymaker, Elesia Ashkenazy, Katherine E. McDonald, Sebastian Dern, Amelia E.V. Baggs, Steven K. Kapp, Michael Weiner, and W. Cody Boisclair. 2015. Respect the Way I Need to Communicate with You’: Healthcare Experiences of Adults on the Autism Spectrum. Autism 19 (7): 824–831. doi:10.1177/1362361315576221.

    Article  Google Scholar 

  • Singh, Jennifer S. 2016. Parenting Work and Autism Trajectories of Care. Sociology of Health and Illness. doi:10.1111/1467-9566.12437.

  • Van Goidsenhoven, Leni. 2017, forthcoming. How to Think About ‘Autie-Biographies’? Life Writing Genres and Strategies From an Autistic Perspective. Language, Literature and Culture.

    Google Scholar 

  • van Manen, Max. 1990. Researching Lived Experience: Human Science for an Action Sensitive Pedagogy. 2nd ed. Albany: State University of New York Press.

    Google Scholar 

  • ———. 2014. Phenomenology of Practice: Meaning-Giving Methods in Phenomenological Research and Writing. Walnut Creek: Routledge.

    Google Scholar 

  • Verhoeff, Berend. 2013. Autism in Flux: A History of the Concept from Leo Kanner to DSM-5. History of Psychiatry 24 (4): 442–458. doi:10.1177/0957154X13500584.

    Article  Google Scholar 

  • Williams, David. 2010. Theory of Own Mind in Autism Evidence of a Specific Deficit in Self-Awareness? Autism 14 (5): 474–494. doi:10.1177/1362361310366314.

    Article  Google Scholar 

  • Yusuf, Afiqah, and Mayada Elsabbagh. 2015. At the Cross-Roads of Participatory Research and Biomarker Discovery in Autism: The Need for Empirical Data. BMC Medical Ethics 16: 88. doi:10.1186/s12910-015-0082-0.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2018 The Author(s)

About this chapter

Cite this chapter

Hens, K., Langenberg, R. (2018). Immeasurability, Biology, Identity. Citizenship and the Meaning of a Diagnostic Label for Adults Diagnosed with Autism. In: Langenberg, S., Beyers, F. (eds) Citizenship in Organizations. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-319-60237-0_11

Download citation

Publish with us

Policies and ethics