Biocertification and Neurodiversity: the Role and Implications of Self-Diagnosis in Autistic Communities

Abstract

Neurodiversity, the advocacy position that autism and related conditions are natural variants of human neurological outcomes that should be neither cured nor normalized, is based on the assertion that autistic people have unique neurological differences. Membership in this community as an autistic person largely results from clinical identification, or biocertification. However, there are many autistic individuals who diagnose themselves. This practice is contentious among autistic communities. Using data gathered from Wrong Planet, an online autism community forum, this article describes the debate about self-diagnosis amongst autistic self-advocates and argues for the acceptance of the practice in light of the difficulties in verifying autism as a ‘natural kind.’ This practice can counteract discriminatory practices towards and within the autistic community and also work to verfiy autistic self-knowledge and self-expertise. This discussion also has important implications for other neurocommunities, neuroethical issues such as identity and privacy, and the emerging field of critical autism studies.

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Notes

  1. 1.

    Autism Spectrum Disorder (ASD), or autism, is a developmental disability characterized by differences in communication, social behaviors, and self-management. It is highly variable in presentation; there is a wide range of expressions of all features of autism among autistic individuals.

  2. 2.

    Autistic self-advocates find autism to be central to identity formation and thus prefer to use the phrasing “autistic person” rather than “person with autism.” The latter phrasing reflects the well-known and oft preferred phrasing of people first language, which attempts to linguistically represent a person as more important than a disability by saying “person with schizophrenia” or “person with mobility impairments.” Although this phrasing is still often used in reference to other disabilities in the disability rights movement, autistic self-advocates reject this phrasing noting, again, the importance of autism on identity and that person-first language seems to reflect a need to remind others that autistic people are, in fact, people [6, 7]. In this article, I use language reflective of neurodiversity and so will be relying on the phrasing preferred among autistic self-advocates: ‘autistic people.’

  3. 3.

    Philosopher Ian Hacking discusses this model as it relates to the popular and widespread use of the puzzle piece as a symbol of autism hacking [52].

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Acknowledgments

I would like to thank Julia Bascom for taking the time to read and provide helpful comments on this article.

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Correspondence to Jennifer C. Sarrett.

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Sarrett, J.C. Biocertification and Neurodiversity: the Role and Implications of Self-Diagnosis in Autistic Communities. Neuroethics 9, 23–36 (2016). https://doi.org/10.1007/s12152-016-9247-x

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Keywords

  • Autism spectrum disorder
  • Self-diagnosis
  • Neurodiversity
  • Scientific realism
  • Neurocommunities
  • Online communities