Parenting a child with developmental disabilities, including High Functioning Autism (HFA), is no doubt, a challenging but exhausting responsibility which I have struggled with for the past 45 years when my son was diagnosed with what was referred to in the late 1990’s as Asperger’s syndrome.
Looking back at my son’s growth and development within the context of the family and community, I am amazed by how so many of his accomplishments and achievements came into fruition for him as well as for his family, as both benchmarks and beacons of strength and hope. My son has defied far too many pessimistic predictions by becoming a fluent and avid researcher and reader, fully bilingual and bicultural, a college graduate and a respected colleague, team member and employee in a nonprofit organization, Shekel, the Organization for Inclusion of People with Disabilities, located in Jerusalem, Israel where he lives semi independently.
Navigating the demands imposed by the web of bureaucratic systems, however, including education, health, employment, housing as well as legal and financial often included working with people who were less than sympathetic to our situation.
I like to think that our successes as determined parents working to guide him through those early childhood years and into adolescence and ultimately into early adulthood, were part of a learning curve, helping us to better appreciate and understand the transition of care needs of his present aging adult status. I am not sure that I subscribe to the belief system which posits that the challenges of a condition or other critical or threatening experience is meant to prepare parents to deal with future and possibly intimidating, unknowns.
Envisioning a future for my 45-year-old autistic son was simply too frightening and too overwhelming and for years, was not a subject I was interested in addressing or even discussing with either family or friends. Becoming a grandmother “Oma” 10 years ago, however, helped me to change some of my thinking, refocus my perspectives, and readjust my priorities.
As Dr. Oliver Sachs wrote over 25 years ago when describing his experiences working with autistic youngsters, it appeared to him that these children seemed to “simply vanish” as adults. Indeed, vanish is a good word as we lack empirical data even today which can give us good guidance about preparing this “invisible population” for a stable and good future as adults.
For example, only recently has the AARP (American Association of Retired Persons) founded in 1958 with a current membership roster of nearly 38 million members, begun to address the needs of the disabled elderly. Their mandate states that its goal is to enhance the quality of life for older persons as well as to promote independence, dignity and purpose for older persons; however, to my knowledge, accommodations for those on the spectrum are not addressed.
As I watched my two neuro-typical children mature, marry and become parents themselves, I realized that while their futures were fairly well established, following time tested patterns and paths, the future path of my middle son, so kind, intelligent and creative, was far from obvious or clear. The future roads he would choose were sometimes limited by his disability even though we always worked with him to help him to remain positive and to focus on his abilities and less on his disability. I think I can, I think I can, I think I can—I can! was our mantra.
As the well-known astrophysicist Stephen Hawking once famously declared: “concentrate on things a disability does not prevent you from doing well”. In fact, envisioning and helping him to craft his own future as an adult on the spectrum, in so many ways, calls for a similar commitment of energy and involvement that we had expended as we guided him through his developmental stages of childhood, adolescence, and early adulthood. With a child on the spectrum, reaching adulthood does not decrease nor reduce parental involvement. It simply changes.
In my recently published book: I Am Me: My Personal Journey with My Forty Plus Autistic Son I ask what I consider to be a central and important question: What happens to these children as adults when their parents and families are no longer around to provide daily guidance, love and support? And, so, what are some of those thoughts keeping me up at night?
Thinking about him as an aging adult on the spectrum, as we his parents and guardians age, creates such anxiety that I spend many sleepless nights thinking about him, possibly alone and lonely and facing a world so ill prepared to deal with his needs.
First of all, it was not so long ago that any discussions about issues related to aging which might appropriately describe a neuro-typical population was considered a taboo. Remaining young at heart and in spirit, defying aging, seeking that illusive fountain of youth and keeping a stiff upper lip, we were trained to believe, would ensure that our lives would remain constant, predictable, happy, and trouble free.
Only recently have we begun to acknowledge as one bumper sticker humorously shouts out “aging is not for sissies”! Too often, however, those aging persons with disabilities, including those diagnosed with an autism spectrum disorder, vanished from our radar.
We know from the writings of such highly respected professionals as the esteemed psychiatrist, writer, and advocate for persons with special needs , the late Dr. Oliver Sachs and Dr. David Mandell, researcher from the University of Pennsylvania, that weak and vulnerable populations were too often neglected and forgotten by family and society.
Condemned to spend the rest of their adult years in mental institutions or incarcerated, the autistic adult faced a doomed future, bereft of support, love and the right to fulfillment of basic human needs. Sadly, in fact, personnel from prisons and mental institutions regarded the aged autistic adults as persons suffering from psychoses such as paranoia or schizophrenia.
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Fortunately, over the past years, writers began to address the subject of autism and aging. These writers and thinkers projected both a sense of poignancy and urgency as they took a good look at the critical needs of the aging adult. Outstanding advocates on behalf of the aging adult include Stephen Shore, Steve Silberman, Eli Gottlieb, John Donovan, Caren Zuckerman and Dr. Temple Grandin. With cautious optimism, they address the needs of the aging adult on the spectrum as they pen books, articles, and editorials based on personal, firsthand experience. They, along with other writers, educators and thinkers, have helped to push for a public discourse which examines subjects related to the transition needs of the aging adult on the spectrum.
Some of these subjects include appropriate health care services, solid resources ear marked for provisions for the aging autistic, adequate and affordable housing options, available leisure and volunteer opportunities and sustainable employment, including reasonable retirement and pension plans. In addition, social services which include counseling designed to meet the needs of the mature autistic and staffed by persons trained to work with this population are absolutely essential to ensure that our aging children age with dignity and respect.
As Temple Grandin recently wrote, sometimes some people with autism just get better as they age. Lifelong experiences coping as an autistic adult can indeed help to strengthen the resolve and the will to thrive and to achieve. Our autistic adult children are challenged to fit into a world which sometimes as youngsters, baffled, frustrated and belittled them. As parents, and their most ardent cheerleaders, we had their backs as they confronted a world which often misunderstood them. We were there to reframe reality, interpret behaviors, and encourage them to find happiness and self fulfilment.
What really keeps me up at night is the thought that they will lose faith in the ability of their community to be there for them when they have the greatest need for support and sustenance. But either out of naiveté or a belief system that begins with the premise that all persons are good and created equal and a strong sense that people of good faith can be counted on to show generosity and kindness, I hold on to the belief that our aging autistic adult children will really be just fine.
Let’s work together to reaffirm and to ensure that their community will be responsive to them when they have the greatest need.
Let’s advocate on their behalf, reminding our family and our communities that our autistic children have become adults, aging adults and are quickly becoming senior citizens.
Let’s shout out, with renewed strength and dedication, that our children deserve to inherit the best we can possibly leave for them as we move gently into the night.
This article was featured in Issue 98 – Fresh ASD Guidance For A New Year