It’s a sunny, quiet Sunday in early spring. I came to visit Alysa at her parents’ place, where she spends her weekends. The rest of her time is shared between a day center and a residential center for persons with autism.

As I talk to her mom, she remains focused, piecing together a puzzle she started just Friday evening. She intervenes from time to time when we address her directly. Her mother mentions her love for music – French artists like Orelsan and Grand Corps Malade (both of whom she’s met!), but also The Beatles. Alysa has an incredible ear; she can recognize a singer’s voice instantly, even from a song she’s never heard before, challenging anyone who doubts her hearing.

Alysa is 36 years old. Her journey began with uncertainty almost from day one. Her mother recalls sensing something different when Alysa was just three months old – a gaze that didn’t quite meet hers, a fascination with lights. This intuition preceded a cascade of early health crises: terrifying breathing cessations requiring a monitor straight from the maternity ward, a severe, undiagnosed illness landing her in intensive care for weeks, and then, harrowing convulsions that appeared suddenly and repeated daily, eventually diagnosed as epilepsy.

The early prognosis offered by doctors was bleak: she might never walk, see, or respond. A “little plant,” they suggested. Oxygen deprivation during a difficult birth complicated by a nurses’ strike may have contributed to cognitive challenges alongside her autism, as her mother reflects.

But Alysa is no “little plant.” She navigated a path through specialized support systems – a pioneer as the first disabled baby in her Wallonian crèche, then schools for the hearing impaired (a common early misdirection for non-verbal children), and eventually a program (Specialized University Service for Persons with Autism) aimed at fostering autonomy. Yet, as her mother notes, theoretical knowledge doesn’t always translate into practical safety. Alysa understands the rule “look left, look right” to cross the street, but wouldn’t necessarily apply it reliably, lacking the innate sense of caution most take for granted. Moreover, her inherent trust means she might readily go with a stranger who speaks to her on the street.

At present, Alysa spends her weekdays at a residential centre, returning home for weekends. It’s a place where she thrives socially, rarely staying alone in her room, preferring the company of others in the common areas. Alysa’s mon speaks of the current director, Vincent, with immense relief and appreciation – his hands-on approach, empathy, and accessibility have fostered a positive environment. She remember how, one time, he went out to fetch some of his residents, stranded after a late-night breakdown.

Transport is managed via a social taxi service – a necessity, but also a reminder of the logistical webs families navigate. Bureaucracy is another constant companion. Her mother recounts the frustrating loop of needing medical certifications for support allowances, even for a condition like autism which is lifelong. Parents like her are constantly facing inflexible systems that are out of touch with medical evidence and lived experience of disabled persons and their carers.

Where Alysa truly shines, beyond her musical intuition, is in her art. Since she was 18, attending her day centre, she has been drawing and painting. It’s more than a hobby; it seems to be a language. Looking at her vibrant work – the sold-out pieces featuring colorful animals, flowers blooming on boats, even a Sisyphus reimagined – you see a distinct sensitivity to color and texture. The subjects of her paintings (flamingos, horses, rabbits, human-like creatures) are all made out of patches of color, as if somebody assembled them out of vivid, shiny scraps.

Perhaps, as her mother says, it’s a way to find calm and “put emotions on paper”. Interestingly, while she thrives painting with others in a class or workshop (she even won a prize!), she has no interest in painting alone at home. She needs that shared space to create.

I am watching Alysa from across the table, at her parents’ place, as she is slowly working on her advanced puzzle. Her mother shows me a storeroom full of puzzles. An unexpected afternoon sun bathes everything in warm light. Alysa remains focused on the little puzzle pieces as I discuss with her mom about disability, growing up, parenting, and aging.

For parents of children with a disability, who have limited autonomy, what will happen to their kid after the parents’ death is a source of nightmares and soul-wrenching questioning. But her mom’s voice remains calm. “Alysa talks about death from time to time,” she tells me. “She asks me if I will cry when she will die. I don’t think she fully understands the flow of time and who is supposed to die first.”

When I am working in my photo project, I maintain some emotional distance from what is happening. My camera acts as an invisible wall or filter. I try to remain focused on documenting what is there. I know that, at some point, I will also feel more fully the emotional weight of things. But sometimes there is no filter and the impact is immediate. Beneath me, the person holding the camera, is me, the parent of a kid with autism. There is also me, a person trying to come to terms with their own aging and how this changes the relation with the world around me.

The camera I hold is a door to the world but also a mask I put on when I go out into the world. It exposes me and hides me at the same time. But right now, in this living room lit by the setting sun, I feel I am no longer just the parent of my son, but, in some way, of Alysa too, of all children, whatever their age may be, whether they have been born with a difference or not.