As I write this letter, the global health crisis has firmly taken hold in New York City, NEXT for AUTISM’s home. I’m relieved to report that our staff is doing well, having adjusted to working remotely with agility and speed. NEXT for AUTISM is fully operational online. Consistent with our mission, we are planning for what comes NEXT for individuals with autism and their families. In this new normal, we were reminded of the importance of our work by the Centers for Disease Control, which reported that the prevalence of autism in the U.S. has increased from 1 in 59 to 1 in 54. Now more than ever, we must gather our strength and resilience.
COVID-19’s IMPACT ON OUR COMMUNITY
The uncertainty and fear brought on by COVID-19 has been difficult for all of us, but for individuals with autism, this crisis has been, and will continue to be, life-changing. Anxiety disorders are the most common co-morbid conditions in individuals on the spectrum. Thirty-three percent of autistic adults have an intellectual disability and thirty-five percent of individuals with autism have limited verbal communication ability. Most rely on communications supports and therapists to help them interact with and understand the world around them.
Coping with these conditions is hard on a good day. Imagine what it is like for autistic individuals now that their support systems have been cut back or are no longer in place. Many individuals live in group homes and community settings that are now closed to visitors. They are unable to see family and are disconnected from the day programs or jobs that typically structured their days. In some cases, regular staff in these settings must stay home due to illness or to care for their own families. This means their clients with autism – who struggle with unpredictability and change – are suddenly adjusting to new faces and routines. We are only just beginning to understand the long-term disruptions from this crisis.
Our own son, Ari, thankfully is doing well. He is continuing his employment training remotely, is with his dad and grandparents, and has an iPhone to see and talk with me every day. Being away from Ari, I have been thinking about how frightening and restricted his life would be if we did not have the resources to take action on his behalf. I can only imagine what other adults with autism, who may not have similar opportunities and supports, must be enduring.
THE NEXT FOR AUTISM RELIEF FUND
Right now, we can make a difference. We’re hearing from direct service providers that they need immediate support to continue serving individuals with autism during this crisis. That is why we started the NEXT for AUTISM Relief Fund to raise and disburse funds in these areas:
Essential Services – Critical therapies, interventions, and tele-health
Skills Preservation – Day habilitation, employment and life-skills training
Immediate Necessities – Technology, training in technology, and monitoring for safety
These are difficult times for all of us, but they are tougher for someone with autism who may be isolated, without the tools and services to cope during this crisis.
I hope you’ll consider donating to the NEXT for AUTISM Relief Fund. Together, we can help service agencies pay staff to provide interventions remotely, or purchase devices that enable their clients to access therapies, learn skills, and stay in touch with employers or their families. The list of needs will only grow with the extension of this current crisis. Please consider helping us fund these immediate needs.
For you and me, sheltering in place is inconvenient, but we are equipped to cope, to stay connected and engaged. Let’s provide our autism community with the tools that it needs to weather these unprecedented challenges.