Strengthening community at Golisano Autism Center amid pandemic

Rochester is well known for its exceptional medical community, schools, technology, arts, philanthropy, and as a phenomenal place to raise a family. Now, Rochester has something else to add to its list of accomplishments — the first of its kind comprehensive autism services center. Named for B. Thomas Golisano, who generously pledged $3 million, the Golisano Autism Center opened its doors in September 2019 to serve the 10,000 living with autism, across all ages, in our community.

Until now, each individual with autism had unique service needs and complex circles of support with few opportunities to collaborate. Medical services were poorly linked to non-medical supports and services, and individuals traveled to dozens of locations scattered across the county. Sterile spaces, drab waiting rooms, outdated equipment, and too few specialty resources had been the standard for many living with autism as the prevalence rate for Autism Spectrum Disorder (ASD) had risen faster than services could keep up.

Children, teens and adults living with autism and their families deserve more.

Thanks to the Golisano Autism Center, what was once a dream was now a reality — until the COVID-19 outbreak.

Since opening its doors, the center welcomed over 2,000 people, more than 800 families; educated 48 school children from 13 school districts; provided adult day programs; in addition to social, sensory, fitness, and recreation opportunities for close to 250 individuals; and was the workplace of 112 professionals from our 12 partner provider agencies. The sudden shift to home isolation did not allow adequate time to prepare for the dramatic routine change individuals with autism and their families faced. The loss of critical in-person programs left parents and caregivers to independently manage the daily and hourly issues related to their child’s autism.

Stemming from the disturbance of structure people with autism depend on to navigate life, calls to our Autism HelpLine intensified, meltdowns increased in frequency and severity, hard-earned skills were being lost, and some struggled to understand what the “new normal” everyone referred to meant for them.

Mr. Golisano personally realizes these challenges because his grandson, Max, experiences the associated struggles of living with autism in our pandemic world. The fact that he understands this is incredibly meaningful to autism families in our local community. It means instead of fearing for the future, families can look forward to opportunity for their loved ones because there is never a good time to pause when it comes to autism.

People with autism cannot afford to wait, in fact, the act of waiting is a learned skill for most. We cannot afford to let them regress, we must help them progress, by carefully providing accessible and equitable in-person access to the specialty providers of the center. The center was outfitted with COVID safety measures and our partner providers have adapted to a paradigm that has been altered by the pandemic and face great challenges as the people they serve return after the significant loss of routine, structure, individualized supports, and skill development. Every day brings new challenges and new adjustments as we seek to ensure our community remains protected, and those that need customized autism support get it.

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Al Sigl Community of Agencies, AutismUp, and CP Rochester have come together to create a collaborative community of providers focused exclusively on the needs of those with autism. The Golisano Autism Center transforms the delivery of autism services in the region by providing a comprehensive, enriched and innovative model that co-locates and coordinates resources offered by multiple providers who are experts in their specific autism service areas that spans the lifetime.

We continue to bolster the generous support of our community as we approach the final phase of our Putting the Pieces Together campaign to raise $9 million. When fully outfitted and operational, the center will provide a clear path to the future for those living with autism in our community and their families. For more information, visit www.golisanoautismcenter.org. Autism HelpLine 1-866-AUTISM-4

Beth Ciardi is the director of the Golisano Autism Center and parent of a teen on the autism spectrum.