There is one creative mind that still sticks out to Marco Damiani after more than 40 years supporting people with autism spectrum disorder (ASD) and other intellectual/developmental disabilities (I/DD). A man named Henry lived at Willowbrook State School in Staten Island, where Marco was beginning his career in direct support upon graduation.
“Henry was a strong, wiry guy,” Marco recalled. “His verbal language wasn’t great, but he could communicate. From time to time he would go to a distant sort of place within himself and lose communication with people. Sometimes he’d come right back and other times he could become violent. But Henry was also an incredible artist in a way I’ve really never seen in my many decades in the field.”
Marco described how each day a bus would drive Henry from Willowbrook to Lower Manhattan, taking the FDR Drive by the Brooklyn Bridge, skyscrapers, and unique neighborhoods. “Henry would take a pencil and a big piece of paper—he only drew with a pencil—and he would draw lines that would look random for a long time to anyone watching him,” Marco said. “All of a sudden you’d say, ‘Oh my god, he’s drawing Chinatown.’ The details in buildings, the clothes on the people, the cars—I still have a drawing somewhere that Henry made that I must find.
“In retrospect, that’s the unique brilliance that resides in many people on the spectrum,” Marco continued. “That was the moment when I began to recognize the amazing, if hard to see, abilities of the people I was working with.”
In recognition of his efforts supporting people with autism like Henry, Marco, CEO of AHRC New York City, will receive the Excellence in Autism Award from Mental Health News Education (MHNE) on Wednesday, May 12 at a virtual reception. MHNE is the publisher of Behavioral Health News and Autism Spectrum News.
Marco came into the autism services field looking to help those who needed it most. “I went in the with the intent to respect and dignify people with I/DD, but if I’m being honest with myself I was also coming from a position of charity, not a position of how can we give individuals the support to be the people they can be,” Marco said. His experiences with Henry and others on the spectrum made him realize that they were often misdiagnosed and mistreated by the existing support systems.
“I was looking at the very narrow way that we judge people,” Marco explained. “Somebody thought that Henry needed to be at Willowbrook. That was that. It was grounded in misperceptions, or worse, perceptions of him being less than human.”
Marco’s career led him to what is now OPWDD, where he led a team of professionals that certified newly opened group homes, often only by looking at paper records per the practices of the time. There he was sometimes confronted with severe treatment methods, including restraints, padded isolation rooms, and sedatives, for people with autism. These attempted therapies were generally ineffective, lacking humanity, and unjust.
“My initial experiences with autism were about people of sometimes extraordinary talent being misunderstood, being placed in rights-confining situations, ostensibly for the good of the person,” Marco said. “Over time thankfully, intervention technologies improved tremendously. People’s skillsets have been acknowledged, uncovered, celebrated, and optimized. But it took a long time to get there and we’re still not there completely.”
Compassionate Collaborative Care
Marco believes that everyone, not just people with I/DD, needs a collaborative care model to thrive physically, mentally, emotionally, and socially. People with autism can present unique challenges for healthcare professionals, service providers, and family members that can only be tackled using a team approach.
“When I was at another large non-profit organization, we began looking at how to coalesce many different components of a support strategy and how to bring these talents together—social workers, teachers, academics, and doctors—to provide an autism-centric support system for families and individuals,” Marco said. “We used creative funding models to give us the flexibility to move around the various strategies that we felt were most impactful.”
Marco and his colleagues also began an annual autism conference that brought together professionals from around the country to present on the latest research and best practices. It is a model he hopes to further improve upon.
“Creating a true community-based, nonprofit, integrated model with connections to academic centers and specialty programs was very valuable,” he said. “I aspire to do a similar thing at AHRC NYC. Who are the ASD experts here? Let’s take baby steps toward accumulating this talent. We need to tap into the talent and develop those centers of excellence.”
Autism and Dentistry
Marco has spent a significant portion of his career focused on how better medical outcomes can be delivered to people on the spectrum, especially when visiting the dentist.
“You need to have providers who are open to creative collective planning to make this work,” Marco said. He helped create a dental desensitization program involving occupational therapists and psychologists that broke up dental visits into multiple sections to better prepare people on the spectrum for their dental care and treatment.
“One of the simplest things we stumbled upon was to have the person count with the dentist,” Marco explained. “The dentist would break up into ten, twenty, thirty, or forty steps the components of a cleaning and have the person count or tap their hand with them.” This step-by-step process was time-consuming and costly, yet less expensive and far less risky than requiring general anesthesia for routine dental visits.
In February 2019, Marco was among those who were instrumental in the opening of the NYU College of Dentistry’s Oral Health Center for People with Disabilities, an 8,000 square-foot, state-of-the-art facility created specifically to provide dental services for people with ASD and I/DD.
“Marco Damiani has led the way in providing innovative services for the intellectual and/or developmental disabilities community,” said Charles N. Bertolami, DDS, DMedSc, Herman Robert Fox Dean of the NYU College of Dentistry, as he honored Marco with college’s prestigious Kriser Medal. “It has been a privilege for all of us at NYU Dentistry to collaborate with him on behalf of expanded access to quality oral healthcare for people with disabilities.”
More Progress to Come
In reflecting on more than four decades of supporting people living with autism and their families, Marco said the biggest shift he has seen is the change of perception and acceptance of people on the spectrum.
“Of all the developmental disabilities that exist, autism, in many ways, has accelerated the most from not being understood at all to being recognized in general society, and in a generally positive way.”
Marco added that he believes people with autism who exhibit more severe behavioral challenges are less positively acknowledged and require additional support and understanding. “I’d like to see greater attention and resources to support people on the spectrum who have more challenging life circumstances,” he said. Marco also stated that while great strides have been made to employ people with autism in quality jobs, particularly in tech, employment opportunities outside of the technology sector, especially for people who have more significant employment readiness challenges, require further development.
“I think the question we—our community and the healthcare community–need to ask ourselves is this: To what extent do we recognize and address the need for integration of physical health, oral health, behavioral health, and social well-being?” Marco said. “Those four things generally need to exist for any person to lead a full, healthy, and productive life. That’s not so easily done, but it has to be an aspirational goal.”