Help for Autism: Creating a Good Quality of Life for Adults with Autism

To find out more about how you can improve the quality of life for adults with autism, go to www.myarchway.org

Quality of Life may be defined as the degree to which a person enjoys the important possibilities of his or her life. Quality of Life for people with autism spectrum disorder consists of the same aspects of life as for all other people. But people on the autism spectrum have their own specific needs that must be met to ensure a good quality of life, to include the quality of the environment (group homes, residential facilities and community living options) in which the person with autism lives.

Quality of Life for adults with autism always starts with dignity and respect for each person, but in addition, there are also specific needs for an adult on the autism spectrum that must be met to ensure a good quality of life.

Dr. Susan Bryson wrote about the central needs of adults with autism and the essential qualities that need to be part of any services and supports for adults with autism to ensure a quality life. She summarizes the major needs of people with autism as:

The need to communicate wants and desires and to interact meaningfully with others;
The need for highly structured, predictable and familiar surroundings;
The need for work and recreational-leisure activities to give meaning to existence and provide a sense of accomplishment and being valued by others;
The need for a safe and caring place of residence chosen from options along a continuum of residential services;
The need for adequate and sensitive health services;
The need for advocates to ensure that rights and needs are respected and not violated, and that existing services are appropriate and adequate for each individual.
Regarding quality of life issues, the declaration by The Autism and Asperger's Syndrome Independent Living Association (whose majority membership are adults with autism) states:

Measuring “quality” assures standards that exceed current professional practice and calls for periodic redefinition of "best practices." 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.
To improve the quality of life for adults on the autism spectrum, the quality of their living environment, i.e., community housing options, residential facilities, residential programs, residential schools, group homes, supported housing, and housing alternatives should be carefully considered.

A quality environment:
Provides basic needs including healthy and appealing food, shelter, safety and social contact;
Provides a caring place of residence chosen from options along a continuum of residential services;
Provides a range of opportunities within the individual’s potential;
Provides control and choice within that environment;
Provides proper autism treatment for consumers and autism-specific training of direct support staff and their supervisors to ensure a proper understanding of the issues that affect adults with autism spectrum disorder; and
Provides augmentative communication tools, technology and related services to help consumers with autism communicate wants and desires and interact meaningfully with others.
Overall findings on Quality of Life (QOL) issues 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).

Overall QOL scores were found to be "poor" (indicating a strong need to improve QOL) for people in large institutional settings and large residential facilities and residential schools for nonverbal people everywhere. People with autism are "nonverbal" in that they either do not use speech at all, or they do not use functional speech as compared with typical people. Moreover, adults with autism have seldom been appropriately supported with augmentative and alternative means of communication. 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 behavior 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.
Quality of life for people with autism spectrum disorder and other developmental disabilities consists of the same aspects of life as for all other people. But adults on the autism spectrum, many of whom can not effectively communicate their needs, have specific needs that must be met to ensure a good quality of life. Many of these needs center on a range of sensory integration issues they struggle with, and those need to be recognized and appropriately addressed by caretakers.

Quality of life for people with autism and other developmental disabilities is based on common aspects of life for all humans, but it also reflects, from person to person, varying degrees of importance placed on those aspects of life. Quality of life for all people reflects how satisfied they are with aspects of life that are important to them. People live in environments. Thus, quality of life results from the interconnection between people and the environments in which they live.

To find more information on how you can help improve the quality of life for adults with autism spectrum disorder and other pervasive developmental disorders, contact the www.myarchway.org

Also see our public service announcement on You Tube with Annie Potts called “A Perfect Storm” on developing community housing options for adults with autism http://www.youtube.com/watch?v=Jtdo6Zh4ok4