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3 A New Definition for Self-Determination

Thursday, July 23, 2009

Mega Center (Pheasant Run Resort and Conference Center)

Many adults with autism are challenged by the very concept of self determination because of their limited communication abilities. Since it is so difficult to know what the person with communication challenges wants, it is often the care provider who makes the decision for that person based on his or her own personal preferences. There are strategies that can be implemented, however, that assist care providers in better understanding the preferences of the person with autism and communication challenges.

Self-determination has become one of the concepts that is frequently used to describe the choices that a person with a disability makes about his or her own life. Unfortunately, some adults with autism are challenged by the concept of self-determination because of limited communication abilities. What often happens is that the family or other care provider makes decisions for the person based on their own personal preferences, or what they want for the person, usually because it is so difficult to determine the preference of the person with autism.

If agencies and families are truly interested in helping the person who is challenged by the concept of self-determination to participate more fully in life decisions, then it will be necessary to think of self-determination in a new way. To that end, this requires a number of people – family, friends, direct support staff, professionals who know the person well. These people must observe the communication of the person with autism, try to understand the person’s preferences and preferred routines, in order to make “as best we can tell” assessments about the person’s choices, preferences, and interests. These assessments are then used to guide the planning and implementation of supports and services.

To make self-determination more meaningful for the person with autism, the family, friends, direct support staff, and professionals must take as long as necessary to make this interpretation. They may need to develop videos and other visual supports to help the person with autism participate more fully in the process. It is essential that they stay open to new and different interpretations of the person’s behavior. They should explore new interpretations together in a spirit of respect. They must remain open to seeing the person’s growth and development. Finally, they must maintain objectivity as much as possible – seeing what the person means rather than what they want to see.

Jennifer M. Brown, PhD, CCC-SLP
Outreach Coordinator
The Kelly O'Leary Center for Autism Spectrum Disorders, Cincinnati Children Hospital

Jennifer Brown, Ph.D., CCC-SLP, is the Outreach Coordinator at the Kelly O’Leary Center for Autism Spectrum Disorders at Cincinnati Children’s Hospital where she is a member of the diagnostic team. She presents on the topic of ASD at the regional and state levels and has co-authored several articles on autism.