A major study by the Centre for Health Promotion of the University of Toronto, published in 1997, defined Quality of Life as the degree to which a person enjoys the important possibilities of his or her life. Three categories of QOL were defined, each with three sub-categories, and based on same characteristics that make life good for all other (non-disabled) people. "Being" refers to aspects of the person, "Belonging" to aspects of how people fit with other people and places, and "Becoming" to aspects of daily activities that promote personal growth, development and adaptation to life. Each of the major categories is then amplified as follows:

The QOL team surveyed a stratified sample of 504 men and women with developmental disabilities in 23 randomly-selected areas of Ontario in 1995. Quality of life for each individual, in each of 54 items, was assessed in three steps. Each item was assessed for degree of importance to participant’s life, then assessed for degree of enjoyment or satisfaction experienced by participant. Two other concepts were assessed: decision-making or the degree to which people make their own decisions and direct their own lives; and the opportunities that are available to people from which choices and decisions can be made. QOL was further assessed from three different perspectives: the participant’s, the perspective of another person who knew the participant well; and the assessor’s. Overall findings were reported in Quality of Life – Dream or Reality? Life for People with Developmental Disabilities in Ontario by Ivan Brown, Dennis Raphael and Rebecca Renwick (Quality of Life Research Unit, Centre for Health Promotion, University of Toronto, 1997).

Diagnosis and specific disabilities were not included as factors in the analysis. But for our concern with adult autism issues, the findings of the survey are suggestive. Overall QOL scores were found to be "poor" (indicating a strong need to improve QOL) for people in large congregate settings and nonverbal people everywhere. Adults with autism are "nonverbal" in that they do not speak and have seldom been appropriately supported with augmentative and alternative means of communication. Adults with the symptoms of autism also tended to form a significant part of the institutional population by 1995. We may infer from the project’s findings that adults with autism generally have a fairly poor QOL.

The factors involved in QOL may be expressed more positively.

• People with higher QOL were associated with the following characteristics:

  -living in community settings

  -having verbal skills

  -having higher functional abilities

  -not seeing a psychiatrist or taking psychotropic medications

  -not having complex medical needs
  

• Nonverbal people with higher QOL were associated with:

  -having an occupational activity of some kind

  -not having marked behaviour problems

  -having leisure activities in community

  -having community access

  -being more independent

  -making own decisions

  -having opportunities available from which decisions can be made

  -having practical support from other people

  -having emotional support from other people

Authors of Quality of Life – Dream or Reality? point out that the QOL approach alters the basic role of both service and policy. The role of service is to provide whatever type of support in whatever areas of life would improve life for individuals, while the role of policy is to reflect the value that what is best for people with developmental disabilities is whatever improves the lives of individuals and adds quality to their lives. To improve QOL for individuals or groups of individuals, services need to consider all areas of a person’s life, and to focus on environments that can enhance life—at the policy level (laws and broad principles), and in culture (values, attitudes and behaviour of others), as well as the service level (specific supports).

In summary, the success of living well independently in communities appears to rest on three main factors acting together (Quality of Life – Dream or Reality? p.131):

• the presence of adequate community agency support;
• acceptance of people with developmental disabilities by the general population of the community (including policies and laws requiring acceptance and discouraging discrimination); and
• the availability of financial resources to ensure that people with developmental disabilities can access a reasonable standard of living enjoyed by other members of the community.

More information about the Quality of Life Research Unit may be found at its website http://www.utoronto.ca/qol/

As we consider how to improve the quality of life of adults with autism in Ontario, we might consider the declaration by The Autism and Asperger's Syndrome Independent Living Association http://amug.org/~a203/quality.html. Measuring quality assures standards that exceed current professional practice and calls for periodic redefinition of "best practice." Any measurement of quality should consider "the satisfaction and preferences of the individual with Autism and Asperger's Syndrome first and foremost and the satisfactions of family, friends and advocates as secondary." Supports and services for people on the autism spectrum are said to have quality when:

• they are designed with maximum control by people with Autism and Asperger's Syndrome;
• they would be acceptable to people without disabilities;
• they are delivered in settings people without disabilities would use;
• they are individualized and relevant to individual needs;
• they are changed as the needs of individuals change;
• they are adequately funded;
• they help people develop maximum independence;
• they respect the dignity and privacy of individuals.

A more mundane set of Quality of Life indicators for a young person with autism may be found at http://angelfire.com/ky/touristinfo/outcome.html