Although my experiences are deeply personal, many of the things I struggled with growing up are reflected in research. Not knowing anything as a child, I've had to research everything as the adult. Understanding helps me to finally place why life felt the way it did. My story sits at the intersection of lived experiences with what I later learned was cerebral palsy, autism, trauma, and the way my nervous system learned to survive.
Growing up with something I later learned was cerebral palsy and autism meant that daily life was uncertain and overwhelming. My body looked and moved differently, and I later learned that my senses processed more intensely, things were more overwhelming. I also later learned I would need clarity, a routine, and predictability just to function. At the time, I didn’t have the language to describe what was happening. I only knew that life felt harder, and that I was always being judged and misjudged.
Living with uncertainty helped me to eventually understand why unpredictabilities felt so threatening. For some people, uncertainty causes mild discomfort. For me, it triggered deep anxiety and fear. With autism, unexpected change disrupted how I made sense of the world. With cerebral palsy, uncertainty often had physical consequences – mental fatigue, and no emotional support.
The unexpected wasn’t abstract; it affected my safety and it affected by body.
Research into predictive processing also resonated strongly. Some brains rely more heavily on clear, consistent information to navigate the world, and when reality doesn’t match expectation, it creates distress. This explains why routine is so important and why it isn't about control. It's about stability. When my environment behaved as expected, I coped.
When situations don't follow the 'norm' it automatically creates fear. When plans change suddenly, my nervous system becomes overwhelmed, both mentally and physically and that also creates fear.
Over time, trauma added another layer. Research on trauma and the nervous system explains how repeated stress can leave the body in a constant state of alert. Growing up disabled and autistic meant repeated experiences of being misunderstood, overlooked, or pushed beyond my limits. My nervous system learned that uncertainty came before harm. As a result, fear didn’t lessen with age – it intensified. Hyper-vigilance became my baseline, not because I was anxious by nature, but because my body was always in a hyper-vigilance state.
Covid-19 created even more fear. Not everyone will understand how autism works, and that's okay – what matters is being supportive.
Much of the current research recognises that behaviours often labelled as “difficult” – such as needing routine, struggling with change, or becoming anxious – are actually coping strategies. They develop in response to an internal world that feels unpredictable or unsafe. When I look back, I don’t see flaws. I see adaptations. I see a disabled, autistic child doing everything she could to survive.
These insights don’t explain everything, but they support what I’ve come to understand about myself. My fears didn’t come from nowhere. They were shaped by cerebral palsy, autism, trauma, and a nervous system trained to stay alert. Understanding this helps me to place my experiences and life in context and with compassion for myself.
But it also needs to help others become more aware of how they need to relate to me – but not just me, for everyone who carries a disability.
This is what The CP Diary offers me: language for lived experiences, and a way to look back at myself with understanding.
This reflection is informed by research on intolerance of uncertainty, predictive processing, trauma, and the nervous system regulation.
Further reading:
Jacqui Rodgers et al; Elizabeth Pellicano & David Burr; Bessel van der Kolk.
