My experience of neurodiversity

Neurodiversity runs deep in my family - though I didn’t always know it. For most of my life, I simply thought I was “a bit different” - forgetful, oversensitive, impulsive, and easily distracted. I always felt I could see all the connections in everything, as though I was always looking at the bigger picture but could never quite reach the answers. What I didn’t realise was that many of the things I struggled with were actually connected - and that they would later help me understand not just myself, but my children too. This is my story: discovering my own neurodivergence, parenting through it, and learning to embrace all the quirks, chaos, frustrations, and brilliance that come with a neurodiverse mind.

Early struggles and missed signs

I was diagnosed with dyslexia at 27 while training to be a nurse. By that point, I’d already dropped out of university once - I’d started an art degree but was too immature and lacking in confidence to complete the work placement, so I left spontaneously. I carried a lot of shame and regret about the decisions I’d made and the opportunities I’d missed because of my lack of confidence. At school, I struggled with attention and was often in trouble, labelled a daydreamer. My exercise books were filled with doodles rather than work. I often felt the urge to act out, and although I spent time in “the unit,” I didn’t feel I belonged there either. Through my teens and twenties, I lived with severe anxiety and spent several years under secondary mental health care, trying various therapies just to cope. I thought my brain was broken. I didn’t realise it was simply wired differently.

Believing my brain was broken

For a long time, my impulsivity and addictive personality often led me into destructive behaviours, sometimes even landing me in trouble. Although not a neurodivergent condition in itself, many people with any form of neurodiversity experience higher levels of anxiety and anxiety-related conditions. I lived with a lesser-known form of OCD, which I now know is called Pure O, throughout most of my twenties and thirties. Like many people living with Pure O, I truly believed that I was somehow inherently “bad.” I also have face blindness (prosopagnosia), which I didn’t realise was a real thing until a few years ago. It’s been a significant factor in my social anxiety. Even now, though I can explain it to people, I still feel embarrassed when I fail to recognise someone I’ve just been talking to, or when I blank on a colleague I’ve worked closely with for years simply because I’m seeing them out of context. Adding to that embarrassment is my very poor working memory - not a great combination!

Learning the hard way

I literally ran away from so many jobs, never understanding why I couldn’t cope when others could. What kept me going were my amazing friends and family - many of whom now recognise their own neurodivergence. Eventually, life began to settle. I had a kind boyfriend, moved away from my hometown, and started progressing in my nursing career.

Entering the world of autism

When my first daughter, Boe, was diagnosed with ASC (with Pathological Demand Avoidance (PDA) traits) at five, we fully entered the world of autism. I read countless books and attended courses, trying to learn everything I could. I remember reading about PDA when she was only three and having a total eureka moment - it described her perfectly. But when I shared this with nursery staff, I was completely dismissed, which left me doubting myself. That sense of being gaslighted by professionals continued throughout her diagnostic journey - something I now know many parents experience. Without the encouragement of a couple of good friends, I might have given up pushing, and Boe could have gone much longer without the support she needed.

The family connection

As I advocated for Boe and tried to get her needs met, the stress on our family grew. Like many parents in this position, I came to realise that the genetic threads of autism and neurodiversity were running thick through our family - hiding in plain sight. Bit by bit, we began to see that what we once thought of as mere “eccentricities” - like sensory sensitivities, chronic anxiety, overwhelm, spontaneous behaviour (and being incredibly cool, of course!) - were actually part of our shared neurodivergent profile.

The fight for support

We’ve been fortunate to have several rounds of family therapy through CAMHS - although getting any help from CAMHS has honestly been one of the most frustrating and traumatic journeys of all. I speak to many parents in the system trying to get support from CAMHS who share this traumatic experience. Thankfully, I’ve always been able to hyperfocus when it came to getting my children’s needs met (often to the detriment of my own health), and that tenacity helped me fight the school system and secure an EHCP for Boe - despite being told she’d never get one. She now attends a special school with the specialised support she needs.

Parenting through complexity

I have lived experience not only as the parent of a child with complex needs but also as the parent of a child whose sibling has complex needs. This has inevitably caused trauma and anxiety for her too. She’s been a young carer from an early age and, as well as being neurodiverse herself, she’s struggled with severe anxiety since childhood - largely due to the impossible and stressful situations our family often finds itself in. Over the past 15 years, I’ve supported many parents on an advocacy level, helping them get their children’s needs met and their voices heard. I’ve read countless books and attended numerous courses - some helpful, some not - on autism, PDA, and ADHD. I’ve been that mother at her wits’ end - when behaviour became too challenging even for a special school to manage. I’ve seen first-hand how the stress of parenting can become too much for families to bear, and how, for several years, separating the children was the only way forward for us.

Finding understanding and acceptance

All of this has given me deep insight into how tough this journey can be. Autism, ADHD, dyslexia, PDA, and SPD will never be “fixed,” but understanding them - reducing anxiety by lowering residual stress (the ‘stress bucket’), reducing triggers, meeting needs where possible, and developing an approach that makes non-essential things inconsequential - can lower demand and resistance, especially with PDA. About five years ago, I sought my own ADHD diagnosis. It helped me finally understand myself and explained why I’d struggled for so long. I’m much kinder to myself now. I can also see how growing up with a mum who had undiagnosed ADHD shaped my childhood - it wasn’t as “normal” as it seemed at the time. Like magnets, we tend to attract people like us. Within my friendship groups (the same friends who helped me survive my twenties), many of us are now bonding over the realisation that we share the same traits our children do.

Closing thoughts

I’m not one of those people who say I wouldn’t change a thing. Our challenges have been difficult, and I do sometimes look at other families who go out together as a family unit with a little envy. I feel incredibly sad for my children when they struggle with friendships or their mental health. But I’ve also learnt so much, and I know I have many things to be happy about. We’ve found that having labels or names for our conditions has really helped - although I tend to see it as more of a mixed neurodivergent profile. The path hasn’t been easy, but it’s taught me a great deal and given me a deeper understanding of how to help others going through similar struggles. These days, around two-thirds of my clients recognise neurodivergent traits in themselves or their children, and I’m delighted to be able to help people with difficulties that are so close to my heart.