In Defense of Diagnosis: Autism, Policy Feedback, and the DSM

Abstract

In this thesis, I questioned the basic assumption that a diagnosis is either completely stigmatizing or, if at all useful, only in that it allows individuals to secure access to medical and support services. I argue instead that a diagnosis can also serve as a catalyst for policy feedback in that it can create political constituencies of people who advocate for diagnosis-specific policy reforms. In my thesis, I examine this through the case study of autism. Specifically, I articulate a three-step feedback process that I then trace through three separate groups within the autism community: parents of autistic individuals, siblings of autistic individuals, and autistic individuals themselves. The feedback process begins when individuals are diagnosed with autism by a medical professional and are in a sense given official permission to latch onto both the identity and community that can accompany an autism diagnosis. In this way, a diagnosis functions as a public policy that grants people a label that has both service and social implications. After receiving these diagnoses, members of each of these groups often seek out group-specific organizations that not only function as supportive communities but also often serve as a key organizing space to transform members into advocates. Finally, this feedback process is completed when these groups articulate their unique claim to expertise on disability policy. I find that in these communities, diagnoses play a crucial role in identity development, community organizing, and ultimately, social change. I conclude with relevant implications for policymakers, health professionals, and service providers.