My Journey as a Sibling: A Message of Persistence and Perspective
Growing up, my earliest memories of my brother weren’t defined by a diagnosis, but by the simple, shared experiences of childhood—spending time away on holidays with our grandparents or losing track of time playing video games together. For a long time, he was just my brother.
The landscape shifted when he was diagnosed with autism at age 15. It was a sudden, complex change that coincided with my own major life transition into university. Living at home during that time felt like straddling two worlds: the excitement of my own future and the heavy, unpredictable reality of our family’s struggles.
That period of distress was the catalyst for my life’s work. I wanted to understand the “why” behind the challenges we were facing, which led me to a career in social care and, eventually, a Master’s degree in Autism Studies. However, balancing this professional expertise with my role as a brother has been a double-edged sword. While it has given me tools to navigate systems, it has also created a self-imposed pressure to be the “expert” who finds all the solutions for my parents and my brother.
There isn’t a solution to everything, and this is something that I battled with as a sibling for many years.
For many years, I carried a heavy sense of guilt—a feeling that I shouldn’t be building my own life while my brother faced such trials. It was only after starting my own family that I truly began to give myself permission to be more than just a caregiver. I realised that prioritising my own path wasn’t a betrayal; it was essential for me to remain a present and supportive brother.
Today, my brother lives at home with my parents. As they age, I find myself thinking often about the future and what it will hold for him. It is a source of quiet anxiety, but I’ve learned to focus on the tangible, positive moments we share—like the family holidays I make a conscious effort to organise for him and my mum each year.
The special time I spend my brother remains a timely reminder that we don’t live in a one-size-fits-all world; people see the world through different lenses, and that is something to be celebrated.
If I could offer any advice to other adult siblings reading this, it would be this: You are doing a wonderful job—far better than you likely realise.
The things we do often lack immediate gratification, and that can be exhausting. But please, do not underestimate the invaluable impact you have on your sibling’s life. My brother’s simple words of love are proof of that. Be kind to yourself. You are navigating some of the most challenging circumstances life can present, and you are trying your absolute best to create positive outcomes. That, in itself, is enough.
