Caring for autistic adults. A qualitative analysis under the lens of capability approach

Abstract

The issue of the well-being and quality of life assessment of autistic people – especially autistic adults – and of their families (representing in most of the cases the main caregivers) is still rather underexplored, both in medical and in social disciplines. In this research we tackle the argument using the capability approach. At first we highlight the advantages, at the methodological level, of this approach and then present the study and its findings. The first phase of the study aimed at finding out the main needs of autistic people and of their families interviewing various members of 56 families of 59 autistic adults (in total we interviewed 86 individuals) resident in Italy, in the area of Turin city and its province. The second phase involved 30 autism support workers, mainly professional educators, with whom we further discussed and deepened the issues previously analysed with the families. For the respondents of our research the most important opportunities (capabilities) enabling people to live a dignified life are work, identity and social relations, and autistic adults often miss these opportunities in their life, for a number of reasons. From the exploration of these reasons the study proposes to rethink the current approach of interventions. In particular the approach should switch from cure to care, in order to consider the autistic person not as a patient in need of medical treatments but as an agent seeking for his/her own well-being.