The Autism Society of America recently announced its efforts to re-brand April, currently designated Autism Awareness Month, around something more complex: acceptance. This pivot recognizes that awareness, while an important first step, can only get us so far. Ultimately, our mission should be to integrate people with autism into our social fabric—not just recognize that they exist.
But our social fabric has many layers. And because acceptance should occur within all of them—the institutional, the interpersonal, and the individual—a warm embrace may sound good in theory, but feel hard in practice.
After my younger brother was diagnosed with low-functioning autism sixteen years ago, my family hung acceptance on our fridge. The magnet—a comically small adjustment amidst what felt like an earth-shattering prognosis—contained an excerpt from the Serenity Prayer, cited by many therapeutic programs as a blueprint for growth. The opening line became unspoken gospel in our house: Grant me the serenity to accept the things I cannot change.
For my family, the things we could not change were plentiful. A derailed career. Neglected relationships. Hundreds of thousands of dollars of out-of-pocket expenses.
It wasn’t my brother’s autism that we had a hard time accepting. It was the burden we were forced to shoulder when society didn’t lift its share—when our public school system side-stepped its legal obligations; when clinicians and therapists billed for making things worse; when state agencies made it more difficult to apply for benefits than to survive without them; when safety-net programs contained more cracks than cushion.
We were not alone: many members in autism support groups described similar hurdles and abuses. And yet, this felt like uncharted territory for us. My family had to practice acceptance in the same way that my brother, undergoing scores of applied behavior analysis in our basement-turned-therapy-room, learned his entire foundational skillset: in bite-size pieces.
In the meantime, we changed the things we could. We researched and advocated; we plead our rights; we built bonds with dependable agents and allies. Of course, our actions rested on a fortunate foundation—of medical literacy, the financial generosity of extended family, and my parents’ professional training in both education and neuroscience—that made it easier to navigate a system so often referred to as broken.
What followed was an uncommon story. After years of appropriate therapeutic, biomedical, and educational interventions, my brother defied almost every element of his prognosis. And yet, my family still grapples with the sacrifices it required. Why did it have to be this hard?
It’s a two-sided tale. And, perhaps, a tale of two sides. After all, the great divide within the autism community occurs between those who view autism as a unique—and perhaps advantageous—extension of typical brain wiring, versus those who acknowledge the potentially debilitating symptoms of the condition. In other words: is autism a gift, or a public health crisis?
Maybe it’s both. For every proud idiosyncrasy and unabashed connection, for every open mind and open door, there is a story of suffering, of sacrifice, and of soreness that comes with navigating a world of missing links—a world equally complex at synaptic and societal levels.
Throw in an unprecedented global pandemic, and the spectrum experienced by the autistic community becomes wider, deeper, and more complex.
On one end, there is comfort in seclusion: the virtual realms catalyzed by COVID-19 may alleviate anxiety, communication barriers, and sensory overload experienced by some autistic individuals during in-person interactions.
But there is also overwhelming evidence to the contrary. The pandemic has upended routines for a population that craves predictability and structure, interrupted behavioral and educational interventions outside the home, and multiplied the need for emergency psychiatric assistance at a time of reduced capacity. Given the high rates of comorbid mental illness among people with autism, these scars may last long after societal re-opening.
Now more than ever, autism awareness—and increasingly, acceptance—should mirror the spectrum of the condition: a celebration of fortitude and uniqueness, and a recognition of pain that may lie below the surface.