“The autism portrayed here is serious developmental brain dysfunction, not any trendy sort of diversity.”
By Jill Escher
Brian Cassano has severe autism and has aged out of his residential school placement and into adult services. His devoted big sister Heather, a budding documentary filmmaker, has decided to film Brian over the course of several months to probe, it seems, a number of difficult questions. On the surface you see a handsome young man jumping, flapping and yelping, but can we peer deeper into the complexities in his head and heart? And on a more pragmatic level, given his minimal functional abilities, what will he do in his adult life, to fill his waking hours? Who will care for him, now, and forever? And who will pay this colossal bill, not just for Brian but for the hundreds of thousands like him?
The Limits of My World is a quiet, slow-moving film that never preaches or rubs your face in policy debates. Rather it lets the camera rest on the protagonist and those around him, immersing the viewer in a gritty reality of autism that could not be farther from the fantasy of The Good Doctor. But in the quiet lulls the viewer cannot help but ponder these painful questions.
The story unfolds: despite abundant therapies that started when he was a young child, plus specialized schooling, Brian remains minimally verbal and seriously intellectually and functionally impaired. He has a history of aggression and property destruction that has rendered his aging parents unable to handle him. His mother reads some old emails:
“Brian has spent the week screaming and melting down, culminating in flooding the bathroom tonight during a meltdown, leaking through the ceiling. Two torn shirts and a new hole in the wall, I love Spring Break… He almost drowned Will (his father) in the bathtub, he broke another wall…. We are at the ER at Sinai Hospital, Brian was brought here by the police… Brian just attacked his sister while she was in her room with the door closed. It took both Will and me all of our strength to get him off her and into his room. He is sitting in there banging his head on the wall and screaming. He is not safe in his home, for him or for anyone else.…”
After the besieged family begs for residential placement, Brian left, never to return. His basic needs are now provided by paid caregivers, presumably via a Maryland developmental disabilities program, though the film does not say.
A monotony seen in Brian’s life is punctuated by gorgeous moments of sheer joy.
At his home, Brian is mostly expressionless and engaged in simple repetitive tasks, like bouncing on a therapy ball or listening to a Mary Poppins tune, typically resisting various soft demands placed on him. But the film also reveals a flipside: Brian has periods of full-smile joy and unexpected engagement while swimming in a pool, taking a bath, sitting in bird-chirpy nature, and, surprisingly, in a 1:1 math lesson that seems to take place at a community college. Brian is also merrily engaged in toying with a video camera with Heather and their mother, and also watching old home movies with Heather. His recollection of vignettes from his childhood reveals a head swirling with memories and emotions.
However, the victories, while heartwarming, are but fleeting bursts of cheer against a bleak backdrop of overwhelming disability that does not relent. The autism portrayed here is serious developmental brain dysfunction, not any trendy sort of diversity. A home video flashback of a spunky and brainy Heather as a young girl insisting that she roll her mu shu pork all by herself provides a stark contrast to her brother’s heartbreaking cognitive stagnation.
An uplifting standout is a newly assigned daytime caregiver named Randyn. Randyn is the embodiment of caregiver perfection. With a bubbly positive attitude, a big smile, smarts, sense of humor, and gentle, genuine affection for Brian, Randyn is the answer to many an autism parent’s prayers. “How can we reach him?” Randyn wonders, adding optimistically “I have a lot of faith my boy can go far.“ So as you root for brighter days for Brian, you also root for Randyn, desperately wishing him success and fulfillment in a challenging job that has a notoriously high burnout and turnover rate.
As they test out possible day activities, the program manager at a barn wonders about the mystery that is Brian but also, sort of playing the role of the chorus in a Greek drama, “Why all the autism?” The question about the autism explosion — why is it happening, and what will we do with this vast, unprecedented population — hovers around the film, leaving you with a pit in your stomach about these families’ collective futures. Anyone remotely informed about the surging autism numbers knows Brian’s situation is a microcosm of a far grander catastrophe.
The Limits of My World is a project clearly fueled by love and empathy for Brian, but face it, sister-filmmaker Heather is also something of a protagonist here. Given that her parents cannot care for Brian, will she be next in line to take over? It does appear that she would prefer a career in filmmaking to full-time caregiving, but her independence may hinge on the taxpayers' continuing willingness to provide for Brian’s multifaceted care, which judging by the film includes housing, day staff, night staff, community day programs and supervisory personnel. Given that lifespan costs for autism like Brian's can easily reach $10 million (not addressed in the film, but I've seen what supported living can cost over time), this is the $64 billion question for autism families everywhere.
The autism community should be grateful for this film for revealing an important slice of disability in America that few have the opportunity to see up close. Brian and his family’s lives, like all those in the upswell of autism, warrant close consideration and society’s deepest concern and strongest support.
• Watch the film trailer here
• See full list of places to watch the film here
• Rent or purchase on Amazon Prime Video
• Purchase DVD through the website or Best Buy
• Rent the film to watch online through several platforms including Youtube and Google Play
• The film is not yet available through streaming services, but will probably be released there in several months
Jill Escher is president of the National Council on Severe Autism, president of Autism Society San Francisco Bay Area, founder of Escher Fund for Autism, and a housing provider to adults with autism and developmental disabilities.
