World Autism Awareness Day – 2nd April 2025

Apr 2, 2025

A Mother’s Journey Through the Struggles of Autism and Independence

When my son, was born, I knew that life would be a journey. What I didn’t anticipate was how much of that journey would be a winding road—sometimes bright with hope and other times dark with uncertainty. Now, at 31 years old, my son is trying to live independently. He’s working hard to manage his own flat and build the life he deserves, but the reality is that it’s a constant struggle. Every day, I watch him face challenges that seem impossible, and yet, I know he’s trying with all his heart.

As a mother, it’s my instinct to protect him, to take on the weight of his burdens.

But sometimes, I find myself unable to help in the ways I wish I could. My son is autistic, and that means his brain works differently. What may seem like simple tasks to most people can feel like monumental hurdles for him. Holding down a job has never been easy for him, his social anxiety, sensory overload, and difficulties with executive function make even the most straightforward work situation overwhelming. He tries, but the constant strain of managing his responsibilities often leaves him feeling exhausted, frustrated, and defeated.

I often feel like we’re living in parallel worlds—he, in his flat, battling with bills and the chaos of his mind, and me, lying awake at night, wondering if he’s okay. He doesn’t reach out for help, often cutting me out and avoiding contact in his denial to face up to reality or accept help, and I know he feels like he’s failing. He buries his head in the sand, not knowing how to confront the mounting problems, hoping they will go away on their own. But they don’t. The rent bill, the missed work hours, the empty fridge—they just keep piling up, one after another.

And then there’s sleep, or rather, the lack of it. We’ve both forgotten what a full night of rest feels like. My son’s mind races in the late hours. The anxiety about his finances, his job, and his future keep him awake long after the rest of the world has fallen asleep. He’s constantly replaying his day, wondering where he went wrong or what he missed, more often blaming the world for the situation he is in as he can’t possibly have done anything wrong. His thoughts are like a carousel, spinning too fast for him to get off. The bright lights of his racing mind shine through, leaving him wide awake and exhausted by morning.

“I, too, lie awake, listening to the silence in my house, worrying about him.”

Woman lying in bed unable to sleep

Sleep has become elusive for both of us. The stress of living with autism—his and mine—has seeped into every corner of our lives, and it feels like the more we try to control it, the more it slips through our fingers. Some nights, I think back to when he was younger, when I would rock him to sleep, whispering promises of a future where everything would be okay. I still want to believe that.

But as he navigates adulthood, I can see how his difficulties with sleep are part of a bigger picture—a complex web of challenges that people with autism face every day. Sensory sensitivities, heightened stress, and difficulty with self-regulation all play a role in keeping him up at night. It’s a cycle of exhaustion that feeds into his struggles the next day, whether it’s managing his job or dealing with his finances. It’s exhausting for both of us, but I know that he’s doing his best, even when it doesn’t feel like enough.

My son is also nocturnal.

While most people sleep at night, he thrives in the stillness, when the world is quiet and empty. He likes to be up when no one is around—when he can exist on his own terms without the social pressures of the daytime world. A perfect example is his visits to a 24/7 gym at 2 am. It’s the only time he can work out in peace, without the fear of having to interact with anyone. The gym is open, but it’s nearly empty at that hour, and that makes him feel comfortable. Unfortunately, this behaviour makes it almost impossible for him to maintain a regular job schedule. The nocturnal lifestyle disrupts his sleep patterns and creates a chaotic cycle that’s difficult to break.

I watch as he clings to his independence, trying to prove to the world—and to himself—that he can make it on his own. He wants to show that he can live a life that’s his own, without constantly leaning on others. But every step forward seems to be met with another obstacle, and the weight of it all can be overwhelming. The dream of independence is beautiful, but it’s not always practical. His struggles aren’t unique, but they’re deeply personal, and sometimes, that makes them harder to bear.

Social gatherings, for example, are almost impossible. Even family get-togethers, which most people would find comforting, become overwhelming for him. The noise, the chatter, the unpredictability of it all—it’s too much for him. He can’t cope with a room full of people, and it often leaves him feeling isolated, even when he’s surrounded by loved ones. There’s a constant need to retreat into a quieter space, away from the sensory overload. It’s heart-breaking for me to see him pull away when he desperately wants to connect, but the environment makes it nearly impossible.

And then there are days out, these aren’t casual outings; they require meticulous planning. Even a restaurant visit; every menu option needs to be researched beforehand, and all ingredients must be checked. The thought of an unfamiliar food texture can cause distress and when we do go, we have to ensure we’re seated in a quiet corner, away from the chaos, with no one behind him. The simple act of enjoying a meal out, something so many take for granted, is a careful balancing act, and often feels like it’s not worth the effort. But he pushes through, because it’s important to him—he wants to enjoy life’s small pleasures, despite the challenges they bring.

One of the most difficult aspects of my son’s journey is his struggle with perspective.

He has a hard time seeing things from anyone else’s viewpoint. This makes following instructions from employers or authority figures extremely challenging. For him, his way of doing things is the only way that makes sense, and he finds it incredibly difficult to adapt to someone else’s procedure, even when it’s clearly explained; the lecturers at University were teaching him wrong as it wasn’t his way, the boss at work had crazy ideas of how things should be done, all of this often leads to frustration for both him and his employers. The world of work, which is already a minefield of social expectations, is even more difficult when you can’t see outside your own framework. He’s not deliberately disobedient; it’s just that his way of processing information is vastly different from others.

On this World Autism Awareness Day, I want to share my son’s story because it’s not just his story—it’s the story of countless individuals with autism who face these same challenges. The daily battle for independence, the constant fight to be understood, and the deep, often invisible, toll that it takes on both them and their families. It’s easy to see autism as a list of characteristics, a set of behaviours or traits that can be easily categorised. But what’s harder to see are the invisible struggles—the sleepless nights, the emotional weight of unspoken fears, and the longing for a world that understands.

I don’t have all the answers. As a mother, I’ve learned that there’s no perfect roadmap for raising a child with autism, especially when that child grows into adulthood. But I do know this: the struggle is real. The exhaustion is real, and the hope—the hope that one day, things will fall into place—is real too.

Every day, I remind myself that we’re not alone in this. There are families all over the world who are living similar realities, navigating the delicate balance between support and independence. And while the road ahead may always have bumps, I will continue to walk it with him, one step at a time, as long as he needs me.