While writing about the experiences of young people in the United States growing up with an autism spectrum diagnosis, their families, and the professionals who work with them, I faced linguistic, conceptual and relational challenges in representing a disorder of social relatedness.
Contribution long abstract
Writing about the experiences of young people in the United States growing up with an autism spectrum diagnosis, their families, and the professionals who work with them, I faced many decisions. Some were questions of terminology: What language should I use for writing about autism, when terms like "autistic" and "person with autism" are each contested and controversial in their own ways? When is autism a "disorder" and when is it a "condition"? Others were questions of relationship: how do I translate a friendship into a narrative? What is gained and what is lost when a person, through their transformation into text, becomes an example of a phenomenon? Above all, the most difficult question I faced was: how do I represent disorder in social relatedness? How do I depict the struggles and vulnerabilities of youth diagnosed with autism a way that honors both the difficulties of their lives and the creativity and agency they bring to their situations?