Living with and Caring for Autism

Autism Diagnosis

There are many aspects of the autism diagnosis that I investigate, including the work parents must engage to get a diagnosis for their child, how the diagnosis of autism operates as a political mechanism for educational services, as well as the ways in which an autism diagnosis serves as a form of identity and/or resistance for autistic communities. In 2011, I published a chapter in Sociology of DiagnosisAdvances in Medical Sociology, titled “The Vanishing Diagnosis of Asperger’s Disorder.” This chapter demonstrates how the 1994 addition of Asperger’s disorder in the DSM-IV opened a gateway for new social identities to become developed and embraced beyond the diagnostic boundaries. Based on interviews with adults who are diagnosed or self-diagnosed with Asperger’s disorder (AD), this chapter shows how the changes to eliminate AD from the DSM-5 threaten the assertions of a positive Asperger identity. This could potentially enhance stigma experienced by people with AD and reduce opportunities for self-disclosure. More importantly, this paper demonstrate how regardless of the removal, Asperger identity must be considered within the broader context of people’s everyday lives and how experiences in social interaction and communication can be strong agents of identity construction.

Parenting Work and Autism Trajectories of Care

I also recently had a paper accepted that theoretically conceptualizes parenting work and autism trajectories of care. This concept articulates how parents embody their child’s autism through creative and proactive forms of parenting work, such as seeking a diagnosis, participating in genetics research, becoming an autism expert, serving as a liaison between various medical and educational professionals, and learning to readjust expectations for the future. This paper has been accepted in Sociology of Health and Illness, a leading international journal, which publishes sociological articles on all aspects of health, illness, and medicine.