In its efforts to rebrand April, currently designated as Autism Awareness Month, the Autism Society of America has announced its efforts to call it Autism Acceptance Month.
This pivot recognizes that awareness is an important first step, but one that can get us only so far. The real 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 be hard in practice.
After my younger brother was diagnosed with low-functioning autism 16 years ago at age 3, my family hung acceptance on our fridge in the form of a magnet — a comically small adjustment amid what felt like an earth-shattering prognosis. It bore an excerpt from the Serenity Prayer, cited by many therapeutic programs to pave the way 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: My mother’s 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 carry when society didn’t shoulder its share — when our public school system side-stepped its legal obligations; when clinicians and therapists billed for treatments that made 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 certainly weren’t alone. Many people in autism support groups described similar hurdles and abuses. Yet this felt like uncharted territory for us. My family had to practice acceptance in bite-size pieces, the same way that my brother, undergoing scores of applied behavior analysis sessions in our basement-turned-therapy-room, learned his entire foundational skillset.
In the meantime, we changed the things we could. We researched and advocated. We pled our rights when they were thwarted. And we built bonds with dependable agents and allies.
Admittedly, 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 often referred to as broken.
The result was an uncommon story: After years of appropriate therapeutic, biomedical, and educational interventions, my brother overcame many aspects of his prognosis. Doctors once told my parents that my brother would likely never speak, but he is now capable of engaging in advanced conversation. Originally lacking the coordination to walk in a straight line, he became a middle-school state champion in the 100-meter dash. Once unable to identify his own reflection in a mirror, he now asks introspective questions about his condition and aspires to be a psychologist. Yet my family still grapples with why it had to be this hard.
It’s a two-sided tale. And, perhaps, a tale of two sides.
The great divide in the autism community occurs between those who view autism as a unique — and perhaps advantageous — extension of typical brain wiring versus those who experience 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 story of 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 of enormous complexity at both synaptic and societal levels.
Throw in an unprecedented global pandemic, and the spectrum of the autism experience becomes wider, deeper, and more complex. On one end, there may be comfort in seclusion: the virtual realms catalyzed by Covid-19 can alleviate the anxiety, communication barriers, and sensory overload experienced by some people with autism during in-person interactions. On the other end, 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 reopening.
Now more than ever, autism awareness — and increasingly acceptance — should mirror the spectrum of the condition: a celebration of fortitude and uniqueness as well as a recognition of the pain that may lie below the surface.
Isabel Alexander is a public health consultant and a sibling of a person with autism.