A. The number of children diagnosed with autism has increased sharply over the past fifteen years, with the largest increase in diagnosed cases occurring among recently developed """"""""autism spectrum"""""""" disorders such as Asperger's Syndrome (AS) and Pervasive Developmental Disorder. As acknowledged in the September 2006 NIMH report """"""""Evaluating Progress on the IACC Autism Research Matrix"""""""", the experiences of this growing population in """"""""real life"""""""" educational and community settings requires further study from a lifespan perspective. As this cohort of individuals moves into adolescence and adulthood, it becomes increasingly important to understand their understanding of the diagnosis in order to design methods of service provision that will continue to be relevant and effective. This project asks how the metaphorical models used by people affected by autism spectrum disorders shape the meanings they place upon these conditions, and influence decisions they make about how to respond. In particular, the project responds to concerns raised by an increasingly vocal group of adult autistic self-advocates, claiming that defining autism as brain-based biomedical pathology rather than an inherent aspect of identity represents a stigmatizing and demoralizing misconception about the nature of these disorders. The possibility that clinical language for describing autism may impede the efficacy and utilization of services over the life course calls for careful qualitative study (PA-07-343). The research uses a mixed-method, comparative study of clinical and educational programs for adolescents with AS in order to address the following questions: Do adolescents diagnosed with AS, their family members, and the clinicians and educators who surround them, make use of """"""""biomedical"""""""" and """"""""cultural minority identity"""""""" models in their talk about and response to the condition? If so, how and when are these models used? What are the consequences of each model for structuring institutional policy and intervention? How does each model shape illness meanings experienced by people affected by these conditions? B. Asperger's Syndrome is an autism spectrum disorder characterized by impairment in social interaction and restricted, repetitive interests. But is this """"""""social disorder"""""""" best thought of as a disease of the individual brain, or as a state of ongoing interpersonal mismatch with others? Which approach best helps teenagers with AS learn how to participate effectively in the social world, and how does it have this effect?
| Fein, Elizabeth (2015) Making meaningful worlds: role-playing subcultures and the autism spectrum. Cult Med Psychiatry 39:299-321 |
