Editor’s note: “Community Voices” is a regular column featuring local nonprofit organizations that offer services to the community in an effort to affect change and make a difference. If you represent such a group and would like to participate in this feature, email email@example.com; include “Community Voices” in the subject line.
For all of us who work in the human services industry, one question lies at the root of all we do, every day: do the people we serve experience the highest quality of life possible?
At Anderson Center for Autism, where we provide services to the 1 in 68 impacted by autism, a neurological disorder marked by communication and processing challenges, finding answers to that question has historically been difficult — if not, at times, seemingly impossible. Many of our nonverbal students and residents are simply unable to express how they feel about life — and even those who are verbal may struggle to process our questions or the nuances and emotions associated with that type of dialogue.
For their family members, friends and professional team, that communication gap can be devastating. They are left to wonder: how is my son or daughter doing? Is he happy? Is she comfortable? Does he feel that his rights are protected? Does she feel supported and encouraged to live her best life? Such unresolved questions can add stress to an already painful situation.
And, as we all immerse ourselves in the “Age of Communication,” where tweets, texts and sound bites allow most to share every morsel of their hearts and every aspect of their days, it becomes increasingly clear that we must proactively find ways to assess how those with autism, who often cannot communicate in the same way, are experiencing the world.
At Anderson Center for Autism, we turn to a unique, evidence-based tool called the San Martin Scale in order to assess quality of life. The scale allows us to gain a solid understanding of how each individual is experiencing the world in context of eight domains:
- Self-Determination: encouraging personal choice and involvement in decision-making and self-expression
- Emotional Well-Being: understanding observable behaviors and forms of expression, and taking measures to provide stable and supportive environments and interactions
- Physical Well-Being: helping to provide and manage adequate diet, hygiene, physical activity and health-related support
- Material Well-Being: providing a sense of personal physical space, a comfortable communication system, and a well-adapted environment
- Rights: displaying ethics, respect, discretion and privacy
- Personal Development: providing opportunities for enrichment, demonstration of new skills and stimulation in varied areas
- Social Inclusion: providing opportunities to visit other environments, enjoyment of inclusive environments and events, and participation outside normal program perimeters
- Interpersonal Relations: utilizing best practices in communicating information, encouraging opportunities for personal interactions, celebrating events of personal importance and providing understanding on an individual level
Just as some of those tweets and sound bites on social media allow neurotypical people to highlight a hope, dream or current reality, the San Martin Scale showcases what is going well for people with autism, and what needs more attention. For those who don’t have the privilege of being able to readily express themselves, this is truly a gift.
For more information on Anderson Center for Autism and the San Martin Scale, visit andersoncenterforautism.org.
Patrick Paul is the CEO/Executive Director of Anderson Center for Autism in Staatsburg, whose organizational mission is to “optimize the quality of life for people with autism.”