Alberta: People with severe autism deserve support and inclusion

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Contributed by Sweta Alberta for The Detroit News on April 28, 2024

“Did you grab the diaper bag?” my husband asked, as we pulled out of the driveway.

“Yes,” I responded, racing one final time through a mental checklist of everything that Abraham, our 9-year-old son, would need for today’s outing: the wagon, his fidget toys, an assortment of very specific snacks and drinks, diapers, wipes, disposable gloves, small garbage bags, and, most essential, his iPad, without which he cannot communicate.

We were on our way to the Autism Hero Walk, an event organized by the Autism Alliance of Michigan. Each year, the Hero Walk draws thousands of people, clad in costumes and capes, to the Detroit Zoo to raise funds for programming provided by the Autism Alliance. This would be our first year attending. Yet instead of feeling excitement—especially since I had recently joined the Alliance’s board—I was filled with a sense of dread about the day.

Abraham is severely affected with autism. People like him are also described as having “profound autism,” which occupies one extreme of the spectrum. Many with this condition require one-on-one attention during their school years and 24/7 care from a professional throughout their adult lives. They can present with an IQ below 50 and have minimal or no language. My son is non-speaking (hence the iPad with a communication app), diaper-dependent, and experiences significant—sometimes highly explosive—sensory reactions to sights, sounds, and smells. He also struggles with the concept of basic safety, regularly wandering beyond boundaries attempting to elope whenever an opportunity presents. For this reason, we have “Abe-proofed” our house—additional locks on doors and windows, fences and physical barriers around our yard—to ensure his wellbeing.

Given these daily trials we encounter at our own home, planning for a day at the zoo was enough to send my anxiety levels spiking.

That might sound irrational; after all, this was a charity fundraiser sponsored by the state’s leading autism advocacy organization. Surely, given the prevalence of people like Abraham on the spectrum—the Centers for Disease Control estimate that more than a quarter of all people diagnosed with autism are severely affected—he would be understood and accepted at an event like this one.

The truth is more complicated. On the drive to Detroit, I considered the words spoken to me by one woman in particular, the mother of an adult child with severe autism. “It feels like our kids are discriminated against,” she had told me, “within our own community.” Profoundly autistic individuals are not only overlooked by the outside world but are often treated like second-class citizens within their own tribe. Indeed, when we arrived at the zoo, it was all too obvious who wasn’t attending the Hero Walk: the families who deal every day with a type of autism that is altogether unfamiliar to the culture around them —and who prefer to remain in the shadows of society because of it.

What do we miss when we keep these people and their families in the shadows? In a word: humanity.

It’s true that parenting Abraham presents serious challenges that make it difficult to share him with the world; it’s also true that life with Abraham is utterly enchanting. I want the world to look past his disability and appreciate his vibrant personality: his playful nature, strong will, keen sense of humor, and innumerable gifts. Keeping Abe and others like him hidden is not only wrong, but it denies all of us the opportunity to live in true community.

People like Abraham don’t inspire Hollywood screenplays or create heartwarming YouTube videos; there has been no effort to make their struggle recognizable to the broader public, perhaps because there is no romanticizing it. Consider their exclusion from research as well: Profound autism receives significantly less attention and funding than does the median of the autism spectrum, the data show. This is especially reckless given that the profoundly autistic population strains our civic institutions—schools, police departments, social welfare programs—in such unique ways. These people are more likely to experience seizure disorders and self-injurious behaviors, which can in turn disqualify them from long-term care, such as group homes and assisted living facilities, because of the danger they pose to themselves and others. Restriction and exclusion of severely autistic people from housing programs only serves to increase the stress on a system of caregivers—in most cases, parents—who are already isolated, exhausted, and hurting, left to wonder as they age what will happen to their children once they’re gone.

We can no longer ignore these families. As a board member, I’m grateful to see the Autism Alliance of Michigan prioritizing individuals with the highest of needs. Closing the gap between the families in need and the resources available to them will of course require funding, advocacy, and legislation. Yet perhaps more important, it will require us—members of a shared society—to take bolder steps towards understanding people with profound autism and integrating them into our communities.

Abraham’s first time at the Hero Walk was no picnic. He made a few scenes, drew some quizzical looks, and took off running more than once. But he’ll be back this spring for a second go-round. And, if I can help it, he’ll be joined by some new superhero friends.

Sweta Alberta is a mother, counselor at Still Waters Consulting and board member of the Autism Alliance of Michigan.