There’s a particular diner that sits in the heart of Times Square in New York City that is a family favorite of ours. On a recent visit, we squeezed sideways through the cramped aisles of the bustling dining room, sliding into our booth. As we scanned the menus for dinner selections, the waiter breezed up.
As an aside, since this restaurant is in the heart of Manhattan, most of the waitstaff appear to be aspiring actors. Our waiter definitely fit the bill; he was handsome and articulate, and I took a good look at him thinking that perhaps one day I might see him belting out a showtune on a Broadway stage.
He introduced himself as Manny and began running through the daily specials. He stopped mid-sentence and broke into a smile. “Wait. I remember you guys. Cranberry juice, right?” I looked up from my menu. And then I looked over at my son, Jack, and asked what he wanted. And, like always, he responded, “juice.”
Manny, who works in one of the busiest restaurants in Times Square, where thousands of tourists and theatregoers congregate every day, saw Jack and remembered him. Jack, who only visits this restaurant a couple of times a year when we are in New York City. I can’t begin to explain how this moment of recognition and familiarity melted my heart.
Jack and I have spent a lot of time together through the years. Sitting in plastic waiting room chairs to see this doctor or that. Holding hands as we walk through parking lots, Jack towering over me with his six-foot frame.
We have laughed. A lot.
I still tuck him in and say prayers on most nights. I shower and shave him. I also run 5ks with him. I have slept with him in emergency rooms, watching and waiting. I have gone to the movies with him, only to exit early when he was done with his popcorn.
The knowing smiles we exchange via the rearview mirror in my car are countless, and precious.
But here’s the tough part. I have also caught a glimpse in the rear-view mirror of him engaging in life-altering self-injury that is heartbreaking and difficult to describe. My heart has dropped as he suddenly bolts into traffic for a reason that he cannot communicate.
But the toughest part? Witnessing others treat him as though he were invisible, talking over him or looking away in discomfort. Case in point: I was told by his preschool director that “he just didn’t belong.” He was even ghosted by our local Special Olympics.
Unfortunately, this has also occurred in the world of autism research. Did you know that currently, 89% of clinical research found in the U.S. National Database of Autism Research excludes people with an IQ below 85?
Jack is autistic and falls on the part of the spectrum that recently has been described with the term “profound autism.” This term is meant to provide clarity about his particular sort of high support needs. It is true that most autistic people have experiences that require a high level of support. The difference is that Jack’s high support needs are not and will never be intermittent. He requires the sort of care that is always present and will always be needed.
When “The Lancet Commission on the future of care and clinical research in autism” began its work, the primary goal was to identify objectives that would provide benefits within five years. This resulted in a final report that, among other recommendations, introduced profound autism as a descriptor. According to The Lancet, people with profound autism:
- Require 24/7 care from an adult caregiver throughout their lives
- Present with an IQ below 50 or have minimal or no language
Subsequently, based on the work of The Lancet commission published in 2021, the Centers for Disease Control and Prevention released its first prevalence study on profound autism in April 2023. The research concluded that the percentage of 8-year-old children with profound autism among those with autism was 26.7%. This means that 1 in 4 children with autism have profound autism.
When The Lancet announced the new term, some in the disability community worried that the terminology could perpetuate stigma. Fortunately, the reality is that the term’s proven intention is a perpetuation of clarity. Understanding that a percentage of autistic people require lifetime, 24/7 care, but more importantly, represent a unique form of neurodivergence that deserves to be seen, heard, and supported, has resulted in profound progress. An example of this is new language added in the most recent reauthorization of federal Autism CARES legislation. It promotes inclusion of the entire spectrum and range of support needs in research and services.
This progress Is happening in everyday life too. That day in the crowded diner, Jack was seen, heard, and supported. Rather than look away or talk over him, Manny saw him as the unique and valuable human being that he is.
And yes, he kept the cranberry juice coming.
To learn more about profound autism, please visit www.profoundautism.org.
Judith Ursitti is cofounder and president of the Profound Autism Alliance. A CPA by training, she spent a decade working in tax accounting. She became immersed in autism advocacy in 2005 when her son, Jack, was diagnosed at age 2. Since his diagnosis, she has worked on the passage, implementation, and enforcement of autism insurance reform as part of the team that passed legislation in all 50 states. She has advocated federally for the original 2006 passage and subsequent reauthorizations of the Autism CARES Act and appropriate enforcement of the Mental Health Parity and Addiction Equity Act.
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