9 minute read
EVERYDAY CHALLENGES OF COVID CAN LEAD TO A BETTER UNDERSTANDING OF PEOPLE WITH SPECIAL NEEDS
By Marlene Ringler, PhD
TO EVERYTHING THERE IS A SEASON, AND A TIME TO EVERY PURPOSE UNDER THE HEAVEN. — ECCLESIASTES 3:1
When considering a range of subjects and topics to address in my article, I began by thinking about the events we are all living through with the raging threats of illness and long-term disabilities due to the coronavirus pandemic. Since we are now more than six months into this global plague, I have had plenty of time to consider how our new life has impacted my family, my life, and specifically, the life and behavior of my 40 plus son diagnosed over 20 years ago with high functioning autism.
I published a book two years ago called I Am Me: My Personal Journey with My Forty Plus Autistic Son, in which I share with my reader my fears, anxieties, and worries about his future as a young man approaching middle age. I have spoken in many professional and general forums about issues relating to the aging process and have raised my concerns about the lack of good research which might inform decisions regarding his future—decisions which persons such as Cos Michael, writing in May 2016, ponders as she struggles to prepare for her own future as an aging autistic. I have advocated on his behalf for an increase in the quality and distribution of medical and social services as his needs change over time. And my adult children, his siblings, remain engaged in supporting his interests even as they struggle to maintain some normalcy in their own daily lives, challenged as they are with special needs children of their own.
The recent passing of the Supreme Court Justice, Ruth Bader Ginsburg, an advocate for the recognition of the needs of the marginalized, brought into sharp focus for me the arguments for suitable housing for the mentally disabled population, including autistic adults, especially during the pandemic. Writing for the majority in the landmark case Olmstead v. LC, 1999, this case was based on the 1990 Americans with Disabilities Act (ADA), which focused on the rights of the disabled to live in their own communities, known as the “integration mandate.” The plaintiffs in the case, Elaine Wilson and Lois Curtis, were admitted to the psychiatric unit of a Georgia state-run hospital where they were held in isolation for years following their treatments, even after being medically approved to move to a more community-based setting. This situation, according to the court ruling, perpetuated assumptions that such persons were “incapable or unworthy of participating in community life” and was in violation of the ADA, which protects individuals with disabilities from discrimination on the basis of the disability and ensures services to the disabled, including community-based services, state-funded supports, and housing options.
Confronting the lack of reliable and good services, which certainly should have been developed and put in place as a response to the lockdowns and restrictions on movements, I turned to my son to hear from him directly about how he felt about the changes in his life since the pandemic spread through our community. I was especially interested in how he felt about the necessary government-regulated restrictions on social interactions to try to reduce the transmission of the coronavirus. After all, as Karl Wittig described so well in his October 2019 article in Autism Spectrum News, while some adults on the spectrum prefer to be by themselves, the fact remains that most, not unlike neurotypicals, have a strong need and desire for social life and community involvement. During
regular times, for example, autistic adults, including my son, were significantly challenged with trying to connect with people and engage in appropriate social interactions with those in and around their communities.
His response was telling as much for what he had to say about the social challenges as the way he put forth his own thoughts and belief systems about life itself. He commented about the importance of traditions, such as religion, as motivating and essential sources of balance and comfort to help us through our moments of fear and uncertainty. He talked about his taking care to look after his well-being through practicing good nutrition habits, regular outdoor exercise, engaging in hobbies and things of interest in his life which contribute to his sense of security, such as music, online research, and reading. Staying active, positive, and forward-looking, he maintained, helped him to put things in perspective.
My son had studied at a Yeshiva—an Orthodox Jewish seminary—for several years, so he was well-versed in traditional Jewish texts. He recommended to me that I read Psalms to help me through anxious moments, suggesting some which gave life a sense of meaning and hope. He also reminded me of the importance of remaining connected to my community of friends and family.
In describing texts which could be useful for me to read to help ease some of my own worries, he referenced the important and overriding dictum in Deuteronomy 30:19: “I have set before you life and death, blessing and curse. Choose life” to remind me that remaining vital, hopeful, and healthy during these miserable days is not only a choice but an imperative.
I can only assume that life today as we know it—life during a pandemic—has given our autistic adult children a rare and unique moment to contemplate how they fit into a world which has so often neglected and demeaned them as individuals, underestimated their talents and worth, misunderstood their behaviors and intentions and chosen to ignore their very human needs, including socialization and community. So often deprived of the right to choose, the right to community-based services, and the right to move freely in and around the community, our adult children now think about what others must be feeling when their very own choices are limited due to the pandemic.
The irony of it all was not missed by my son.
For example, social isolation has become the norm, especially during prolonged periods of lockdown, and the sense of security and well-being is no longer a given considering the severity of the economic downturn. Even freedom of movement has now been restricted, sometimes resulting in terrible tragedies and fatal errors of judgment by the authorities. A recent event in East Jerusalem, which involved the killing of a young, 32-year-old autistic adult Eyad Hallaq, who was innocently walking to his daycare center one Saturday morning and mistakenly identified as a terrorist, highlighted the nervousness, tensions, and pressures we are all living with today. This incident shook my family to the core and reminded us, yet again, of our son’s vulnerability.
The story of Eyad has brought into sharp focus a number of issues often ignored as we had gone about living our lives in times of normalcy, predictability, and certainty. We now must pay attention to the necessity of mask-wearing to protect ourselves and others from transmissions. We need to be aware of persons around us, no longer invisible, as we make efforts to social distance. Counterintuitive though it is for us social animals, we are prescribed where and how we can exchange informal greetings, how many persons we can accommodate in places of worship and in our homes, and where we can travel. Quarantining as a response to exposure to the virus or being a contagion ourselves, we are forced to remain in isolation, often in unfamiliar surroundings, as we all struggle together to stop the advancement of this pathogen.
Perhaps these times require us to think very carefully about what it means to be empathic, to be sensitive to the stranger in our midst, or to consider the needs of others as important as our own. Often accused of lacking this characteristic of being able to empathize, the adults on the spectrum suffer dearly when persons who are ignorant regarding autism draw unfair and inaccurate conclusions about what has been perceived as strange behaviors: turning one’s face away from another in order to avoid any contact, masking one’s face to become almost invisible or unrecognizable, camouflaging as a means to maintain social distancing, and reducing social encounters to the point of personal, self-imposed social isolation.
In a sense, then, the world of the autistic as understood and described in the research literature and evidence-based studies has become, to some degree, our own world today. Isolation as a goal rather than a strange behavior is lauded and appreciated. Social reclusiveness, no longer exceptional, is a state of being very familiar and comfortable for our autistic adults. And living with constant uncertainty, and by extension, free-floating anxiety has become the norm for many of us. Reports by mental health experts practicing during the 2020 pandemic, for example, describe an uptick in rates of depression by nearly 50 percent.
Rather than being analyzed and interpreted as mental instability or paranoia, which according to some professionals, characterizes and describes many adults with autism, our adult autistic children can be seen as understanding very well what fear and pain is all about as these feelings are grounded and confirmed by facts.
In a very real sense, then, our autistic adults may have become our bell weathers, our eyes into life framed by another reality and perhaps, just perhaps, a rare moment in our human history to express genuine empathy for the adult with autism in our midst.
REFERENCES
Michael, Cos. “Why We Need Research About Autism and Ageing.” National Autistic Society, May 2016. Wittig, Karl. “Social Activities and Communities for Individuals with Autism: Meeting a Basic Human Need.” Autism Spectrum News, October 2019.
Dr. Marlene Ringler is a PhD in English Language and Literature, a trained and certified teacher, CEO, and founder of the international Ringler English Language Institute. Her company was recognized as a lead vendor for global training for multinationals to include Toyota, Intel, IBM, and Microsoft. She pioneered the concept of in-house training specifically in business settings. When living in the United States, Marlene was the co-coordinator of the English for Specific Purposes and English as a Second Language adult training programs for refugees and immigrants in Montgomery County Public Schools in Maryland. Her program was nominated for special recognition by the White House for its work in adult literacy. An advocate for persons with disabilities, Marlene encouraged people in school systems in the US and Israel to develop programs for students who might not otherwise be able to function in a typical classroom. She counseled and guided teachers, administrators, and parents to recognize the needs of the disabled population. Today, Marlene works closely with service care providers to maximize the potential of the autistic population in a work setting. In addition, she counsels and advises parents about resources, opportunities, and the legal aspects of raising an autistic child to adulthood. Marlene and her family currently reside in Israel and sponsor, host, and organize conferences, social events, and gatherings to promote awareness about the needs of the autistic adult.
Website: https://www.marleneringler.com Facebook: https://facebook.com/authormarleneringler/ Twitter: https://twitter.com/MarleneRingler LinkedIn: https://www.linkedin.com/in/dr-marlene-ringler/
