What and Who Defines a Person’s Quality of Life?

According to Scott Michael Robertson, an adult living with Autism and pioneer in the neurodiversity movement, a deficit-focused model has dominated most discussions and research relating to quality of life and people living with Autism. Over the years, researchers, scholars, and professionals have widely disagreed on how to define quality of life with regard to people living with disabilities. The World Health Organization’s position paper on quality of life from 1995 (WHOQOL, 1995) defines it as: “Individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns.” Carr, Gibson, & Robinson (2001) describe quality of life as concerned with how “impairment limits a person’s ability to fulfill a normal role.” Countless other descriptions of the concept of quality of life abound in academic and professional discourse according to Robertson. As Robertson has shared, below is a synopsis of key areas that current researchers and thinkers in the field of adult Autism may consider in a discussion relating to quality of life:
Core Domains of Quality of Life Indicators:

Self-Determination: Autonomy, Choices, Decisions, Personal Control, Self-Direction, Personal Goals/Values

Social Inclusion: Acceptance, Status, Supports, Work Environment, Roles, Volunteer Activities, Residential Environment

Material Well-Being: Ownership, Financial, Security, Food, Employment, Possessions, Socio-economic Status, Shelter

Personal Development: Education, Skills, Fulfillment, Personal Competence, Purposeful Activity, Advancement

Emotional Well-Being: Spirituality, Happiness, Safety, Freedom from Stress, Self-concept, Contentment

Interpersonal Relations: Intimacy, Affection, Family, Interactions, Friendships, Support

Rights: Privacy, Voting, Access, Due Process, Ownership, Civic Responsibilities

Physical Well-Being: Health, Nutrition, Recreation, Mobility, Health Care, Health Insurance, Leisure, Activities of Daily Living

Professionals working in the field of Autism who focus on this issue generally agree with Robertson on the core domains that encompass quality of life. Dr. Robert L. Schalock’s (2000) comprehensive review of papers on quality of life from the last 30 years, on which Robertson relies, identified the eight core domains listed above and their underlying indicators.

Like the neurodiversity model, Schalock (2000) outlines quality of life domains in a manner that fuses a social model of disability with an individual commitment to self-determination and self-advocacy. The framework also rejects a deficit model of disabilities in favor of a perspective that embraces strengths and difficulties, as well as human diversity writes Robertson in his article entitled, “Neurodiversity, Quality of Life, And Autistic Adults: Shifting Research and Professional Focuses Onto Real-Life Challenges.”

Central to any discussion about quality of life is the person; and every other perspective is a distant secondary opinion. There are individuals on the spectrum who can spend every waking hour listening to music and they are perfectly happy and fulfilled. There are individuals on the spectrum who never utter a single word yet they communicate brilliantly through their artwork. There are individuals on the spectrum who derive immense satisfaction from scanning books at a library or stocking shelves at the local supermarket and they perform these jobs with great efficiency and take immense pride in their accomplishments. Aren’t these, and countless other examples, indicators of an excellent quality of life?

Our perspective as onlookers should not be to “put our heads on the shoulders of others” but rather, we should be supportive and provide non-judgmental endorsement of individuals on the spectrum rights to enjoy their lives as they deem fulfilling (albeit in safe, healthy and legal pursuits!).  Our efforts would be better spent opening doors that provide opportunities for people on the spectrum to live, work and recreate in the community so that they can discover personally fulfilling avenues. This is a core goal of The Daniel Jordan Fiddle Foundation in our development, support and advocacy efforts that include programs, public service information and resources, and public policy reflective of the goals, needs and ideas of the diverse population of adults living with Autism.

As you move forward in your own life, consider the core domains of quality of life presented above. The vitality of your own experiences and choices propels your quality of life. So too, for people living with Autism, the right to make individual choices and pursue a life of self-determined meaning is vital.

The Birthday of Independence

Today is July 4th, the birthday of the United States of America and our independence as a free and democratic nation.  The words BIRTHDAY and INDEPENDENCE in this instance go hand in hand.  In the lives of adults living with Autism and other challenges, perhaps one could say that attaining one’s independence to live, work and participate in community life is indeed a kind of birthday—or rebirth of the person.  To achieve independence it is essential that the person grows and develops in ways that give him or her the skills, mind-set and opportunities to have the confidence to say, ” I can do it, and I am ready to try.”  In turn, it takes the surrounding community to say, ” We believe in you, and we are here to back you up and support you as you take these new and exciting steps towards independence.”

Just like the the pioneers who forged forward to start our great country, striving towards independence takes courage.  It takes a leap of faith to go on a path not yet traveled without any certainty of what the future will be or even if one has the ability or strength to face what is ahead. Yet, if our forefathers and foremothers did not take this chance, and did not pursue a calculated risk that the future would be better and more prosperous for them, the birth of our nation would never have happened.  No one could have predicted then the impact of their actions, but today, we can truly celebrate the awesomeness of their courage and what was achieved.

Achieving independence is not about going it alone.  Achieving independence is when all of us realize that it is every person’s inalienable right to live a life that enhances personal freedom while embracing our connections to one another.  People living with Autism and other challenges are entitled to the same rights as every other citizen of our country and this includes the right to be independent. As a society we must allow all of our citizens the chance to grow, prosper and flourish to achieve their optimal independence.  We must all take this risk, just like the founders of our nation did, so that all can attain their personal dream of a better life.

On this 2012 birthday of our nation’s independence, as you watch the fireworks, light up the barbecue grill or spend time relaxing—think about what independence means to you and how important it is that you have it.  Now, if you will, think of a person you know who may be seeking more independence or may be capable of it but is afraid, and perhaps you can offer your hand to that person to hold as they move forward into their future of independence.

G-d Bless America Now and FOREVER!!!