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How is your family living with autism?
The journey of a family with special needs has famously been compared to a trip to Holland. The end of school services for young adults is often described by their parents as falling off a cliff. But to our family, living with autism is like living on an island. At times, we are visited by passing ships, with friends and other families sometimes disembarking for hours or perhaps days. But in the end, they depart, leaving us to manage the complexities of the diagnosis – and its surrounding circumstances on our own.
Island time looks a little different on the island of autism. Slower, yes, at times, but also hyper-accelerated at others. The aching slowness as you wait, watching for developmental milestones to be met. The shocking swiftness of an entire bottle of Hershey’s syrup exploding – one moment, safely tucked in the fridge, the next, a fountain of cocoa-scented rivulets dribbling down your once-white couch. When the world was plunged into asynchronous interactions, creating structure to each day was core to survival.
For some, the pandemic reshaped their sense of space, forcing them to re-evaluate personal space, proximity, and what and how was shared. On the island of autism, your space was already defined – separated from the rest of the world by an ocean of sensory challenges and misconceptions. Visitors, yes, but few who could truly assimilate and find a home alongside you. Instead, you were already protecting your space, ever vigilant of interruptions, disruptions, deviations.
When you exist on an island, your interactions are scheduled, measured – dependent on the timing of the next flight, or ferry, or dinghy. You plan for those moments, and savor them after they have passed. On an island where autism does not have spoken words, you value those shared with others like priceless gems. And you seek connection and companionship across the sea.
As time passes, a few stalwart travelers are able to find a toehold on the island. Persistent therapists. Dedicated friends. Understanding family members. Willing souls who are willing to pitch a tent, and then build a little home alongside you. And that community will sustain you – in ways they will probably never fully know. Nurturing that community, so that it will provide for your loved one well into the future – that is the task at hand. In fact, there is probably no more important work than creating and maintaining an autism community for your person.
Living with Autism – in the Present
The mental health world supports meditation as a tool to combat the anxiety of the what-ifs as well as the ruminations of the past that can mark depression. Meditation forces being in the present. So does autism. There is no “dinner is in ten minutes” or “you ate the last cookie an hour ago.” There is no time to dwell on the distant future, or to cry over spilt milk (or juice or chocolate syrup). There is just taking each and every moment for what it is, as it happens. And in the brief pauses between inhales and exhales, extrapolating the present to the next steps.