«Like anthropologists on Mars»: The quality of life of families with high-functioning autistic children
Alice Scavarda
The study presented herein aims at deepening and comparing strategies of stigma management and resistance of families with (high functioning) autistic and Down children. The paper focuses on the results of interviews to the subsample of families with children with High Functioning Autism/Asperger Syndrome, so as to highlight the different types of barriers faced by those interviewed — «barriers to doing» and «barriers to being» — and the strategies developed to overcome them. The quality of life of the families depends on both structural barriers, namely budget cuts related to public services, and on psycho-emotional barriers: the consequences of social discredit produced by invisibility and the peculiar characteristics of the syndrome. The results suggest the presence of an «exclusive inclusion», because the families involved in the study have found themselves, like «dolphins in the desert», in a hostile environment, from which they are often excluded.
Keywords
Autism Spectrum Disorder, stigma, «barriers to doing», «barriers to being», inclusion.
