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I like the term, chromodiversity. Like the term neurodiversity, it’s an attempt to change the narrative about common genetic variations from a concern with deficits to an acceptance of difference.

But though I appreciate the term, I don’t think I’m yet ready to embrace that concept. While it may be appropriate for those able to access early intervention, whose difference can be channelled positively towards a pursuit of their strengths, I think many of us diagnosed late would feel that our lives have been defined by deficits. And, indeed, by differences framed negatively.

Changing the narrative does not change the reality of those whose trajectory in life has already been severely hampered by this condition. It may help us identify new career pathways more suitable to our cognitive disposition. It may help us to shift our mindset from “I can’t” to “I can”. We may even come to a better acceptance that we have certain strengths and characteristics that are a positive factor in our lives and the lives of those around us.

But a change in narrative cannot rewire neural structures, or change the impact of lifelong physical and psychological health conditions and experiences. For me, before we can reframe the narrative, we need to see a fundamental shift in the provision of support for those with the condition, which at present is severely lacking. Were it not for volunteer advocacy, many would be completely on their own.

For my part, I am yet to fully come to terms with the impact of this condition on my life. Information and support was so lacking when I was diagnosed that I simply pushed it from my mind for nearly two decades. The only reason I have started to address the elephant in the room more recently is because I had a rather major wobble a couple of years ago as a result of neglecting treatment for a significant period of time.

So yes, I am still in that addressing deficits phase. I’m not yet ready to say I have just been bestowed with difference and simply need to define a set of alternative strengths. This is a condition which caused considerable developmental delays growing up, which has had a pervasive impact on my life as a whole. How does advocating for myself as being chromodiverse actually help me bring about meaningful change in my life? I can’t answer that question right now.