Quality of Life and Physical Well-Being in People with ASDs

Abstract

The term Quality of Life (QoL) started to be used in relation to disability in the 1980s. Persons with disabilities have the right to a good quality living. In the 1990s it became a goal to be achieved, verified and measured. The next step was mandatory: if progress is to be made towards achieving QoL for people, then it is necessary to specify what QoL is. In 2002 Schalock and Verdugo published 12 basic principles for conceptualising, measuring and implementing it. They defined a multidimensional concept that is influenced by personal and environmental factors, and their interaction, and is improved with self-determination, resources, life purpose and a sense of belonging. They translated their multidimensional proposal into eight dimensions: emotional well-being, interpersonal relations, material wellbeing, personal development, physical well-being, self-determination, social inclusion and rights. The importance of the concept of QoL lies in the fact that it provides: a conceptual framework from the individual’s perspective; 2) a guide to action; 3) a criterion for assessing both strategies and results. QoL becomes the goal to be reached for the person, the organisations, the politicians and the funders concerned. It is a guarantee with regard to objectives, procedures and quality outcomes. To improve an individual’s QoL we must focus on their point of view, their needs and their context. The QoL model helps us, in the first place, to know where to look. We have eight dimensions, but might there not exist a hierarchical structure among them? Kreuger et al., (2008) conducted a study to identify the priority needs of persons with severe intellectual disabilities. One of their findings was that the physical well-being dimension is of crucial importance for these persons. Chou et al., (2007) carried out a study in Taiwan in which they assessed the QoL of adults with intellectual disabilities. They found that of the eight dimensions in the model put forward by Schalock & Verdugo (2002), the one singled out as most important was the physical well-being dimension. The eight dimensions of QoL are inter-related and it is likely that improving one will result in an improvement in one or more others. Of course, the converse is also true. This is particularly evident in regard to the physical well-being dimension. Physical well-being and emotional well-being are closely related. Indeed, in populations with communication difficulties, one of the ways pain or physical discomfort may be manifested is through displays of anxiety, increased motility, crying and even tantrums with acts of aggression and/or self-aggression (Nieto et al., 2008). Physical well-being becomes a key item for