Reconsidering the Importance of Quality of Life | Organization for Autism Research

Perspective

The pandemic has provided a tremendous opportunity to consider what we value in life. As you think back on the past year and all you have observed, from stay-at-home orders to mask mandates and hyper-vigilance with hygiene, you probably realized the ways that your day-to-day life has been limited. We have not been eating out in restaurants, going to sporting events or concerts, or wandering around museums. Most of us, for a large portion of that time, were restricted to our homes and our local neighborhoods. Sure, we could have bent the rules here and there and taken advantage of opportunities to gather with friends etc. but largely, if we were doing our part, we chose not to do those things.

When I look back, I better appreciate the value of all of those things I typically would have had the opportunity to enjoy. I have believed, from the beginning of the pandemic, that if I was patient, did what public health officials recommended that I do, I would eventually be able to enjoy many of those same things again. We are slowly edging in that direction as we cautiously return to limited freedom and leisure activities that we could not enjoy during the pandemic. What struck me was that this “choice” that I was making in response to the pandemic — to stay at home, away from friends and many leisure activities — isolated me in many of the same ways some autistic adults are isolated when they do not have access, flexibility, and accommodations.

About a year before the pandemic I was wandering through the grocery store when I spotted a young man who looked very familiar, but I could not place him. He and I were standing across from one another over a bin of fruit when I heard someone call out “William, will you get an extra…” and it clicked. This young man standing before me had been a five-year-old autistic boy when I was student teaching 20 years ago. He and I had walked through this same store during “community-based instruction” to work on counting and other skills in real-life contexts. Twenty years ago, William needed extensive supports to learn and navigate a school day and I remember, even then, feeling a good deal of pessimism about his gaining independence from those supports. Now, here he was shopping in that same store, this time with someone who appeared to be a roommate or friend.

It is a simple everyday thing, grocery shopping, but it has a dignity attached to it that enhances the quality of our lives. You get to make choices; you get to seek out those foods that you enjoy. William, with guidance and help from his patient, caring parents and schooling, was able to outgrow some of the supports he had previously needed and enjoy a level of independence well beyond my expectations for him 20 years before.

This small anecdote about William ties into the limitations we all experience during the pandemic. Our choices are restricted: we cannot go wherever we want, we often have not been able to purchase essentials that we needed (remember the national toilet paper shortage of 2020?), we are often limited to Netflix for entertainment and Zoom meetings for work interactions because in-person activity in enclosed spaces is not safe. For many of us, our quality of life suffered. We are stuck inside with little to do and largely cut off from face-to-face meetings with friends, extended family, and the rest of the world. Maybe, for a moment, perhaps we experienced what many autistic adults experience when systemic/structural barriers impinge on their opportunity.

Many of these barriers are not easily recognizable, and I raise that point as someone who knows I do not recognize them all of the time and am sometimes even confounded as to how they are barriers. This is important because it signals, at least to me, an even bigger need for inclusive environments brought about by inclusive design. I am not a public health expert so I have had to listen to public health experts who could tell me which parts of my community I could navigate in a pandemic and how. Likewise, autistic adults can help identify and retool structural and educational barriers that inhibit their ability or opportunity to take part in day-to-day activities that bring value to our lives.

Creating more opportunities for all people to enjoy an increased quality of life will have synergistic effects within our communities. Think of how you are a better partner, friend, worker, etc. when your quality of life meets your needs. What kind of impact could we create if together we attended to and valued everyone else’s quality of life and helped them increase it?


Kevin M. Ayres, Ph.D., BCBA-D, is a professor of special education at the University of Georgia and co-director of the Center for Autism and Behavioral Education Research at UGA and a member of OAR’s Scientific Council. Dr. Ayres has worked in the field of autism and disability as a classroom teacher, researcher, and university instructor. His work has focused on behavior analytic interventions to improve education and quality of life for individuals with autism and intellectual disability.


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