How One Letter Helped Me Feel Seen as a Parent of an Autistic and ADHD Child: A Personal Reflection on the Journey of Love, Grief, and Strength.
A few days ago, I had a meeting with my child’s school that left me questioning the understanding of autism within the system. It made me feel like I was fighting an invisible battle, one that I might never win. Then, I listened to an open letter by Hugh Van Cuylenburg, and it felt like the words were written just for me. The pain, love, and strength expressed hit me like a wave, and I knew I had to share my own story.
When Hugh read those words—‘The pain of being a parent to an autistic child is not the child. It is the world’—I had to pull over. The truth of it hit so hard. I felt understood in a way that’s so rare for parents of autistic children. It’s the world that hurts, not our kids. It’s the constant battle of trying to get the world to understand them for who they truly are.
It’s also the grief that comes with knowing my child in all their brilliance, yet knowing the world often doesn’t understand them. I grieve the life I imagined for my child, not because I doubt their ability to lead a joyful, fulfilled life, but because navigating social settings, relationships, and sensory systems is hard. And it's hard every day.
That meeting made me realise just how much work still needs to be done in schools and society. I don’t want to change my child. They don’t need to be fixed. They are perfect just as they are. But the reality is, there are still so many people who don’t understand that. When I look back at that conversation, I hear Hugh’s words: ‘They are extraordinary, not despite their differences, but because of them.’ This world is constantly asking our neurodiverse little ones to change and adapt to fit the boxes society has set for them. Why aren’t we asking the same from those whose brains operate ‘normally’? Why isn’t the responsibility of understanding, compassion, and change equally shared?
The exhaustion. The constant worry. The guilt of comparing my family to others. I never expected to feel so torn, so constantly grieving the life we thought we’d have. But, as Hugh says, we keep going. Even when we’re so tired we can’t see straight, even when the world refuses to slow down for us, we keep going.
Having a child with autism adds so many mental and physical demands to the role of parenting. Constantly managing my own emotions, pushing them down to stay regulated so I can support and guide my little one at any moment. Predicting and planning for meltdowns. Coming up with strategies to transition every time we leave the house. Every school drop-off brings worry about how their day will unfold. Extra meetings to plan for learning and emotional management. NDIS reviews, planning, appointments, booking and attending, completing home tasks to support their development. All while trying to answer when people ask, “How are you?”—feeling like no one will ever truly understand what’s happening inside our home, our lives, and our minds.
We are all walking this path together, and even on our hardest days, we keep loving. We keep fighting. We are the ones holding it all together for our children, even when no one else understands the weight we carry. An autistic meltdown may mean my son speaks harshly to me, hurts me or his brother, or is destructive. Yet, once he’s regulated, he’s back to being the kind, affectionate, and loving child I know him to be. In those moments, sometimes in a matter of seconds, I have to let go of all the built-up emotion. Not that loving my child is hard—it comes so naturally. But sometimes, after blow after blow, day after day, it takes its toll.
If you’ve ever felt like no one truly understands the depth of what you’re going through, I see you. And I want you to know—you are not alone. We are here to support each other, to share our stories, and to keep going. Together, we are stronger. Join our community and let’s keep going—because of them, and for them.
