Neurodevelopment & Epilepsy
Susanna’s Story: Living with epilepsy and autism

Epilepsy and autism blogger and advocate

Susanna was diagnosed with epilepsy at the age of three. It took another 12 years before she was also diagnosed with autism, aged 15. In this Research Blog, Susanna shares her insights into life with epilepsy as an autistic person and explains how her conditions go hand-in-hand.

For about a year I was in denial of my autism diagnosis. Not because it didn’t fit or make sense – it did. But simply because I couldn’t believe it had taken so long. I felt that I’d been drastically let down by the entire system and that simply didn’t feel right. How was it possible for so many people to overlook this when it was so blatantly obvious?

Growing up with uncontrolled epilepsy is hard enough. But doing so in a world that is so unsuitable for neurodiverse people makes it even harder. And for the first 15 years of my life, I had to navigate it without any real understanding of myself. I had to work my way through the maze of life without any support.

Finally getting that diagnosis was a blessing, but it took time to adapt. Epilepsy had been the one thing that seemed to define who I was. And now, all of a sudden, I had this other condition to work out too.

I remember shortly after my diagnosis, a clinician tried to persuade me that I should start viewing autism as my main condition rather than epilepsy. At the time, I just couldn’t do that. I hadn’t fully processed the diagnosis and was still trying to work out exactly what it meant. However, several years later I realised what she had said was wrong.

I don’t have a ‘main condition’. Both affect me equally and that is what I’m most passionate about making the wider world see. Co-occurring conditions are exactly that. Issues that go hand-in-hand, not separately. And I strongly believe that this mindset needs to be adopted by all for understanding and care to improve. It doesn’t matter that my diagnoses came at different times in my life. The blunt reality is that I’ve had both conditions since the day I was born. And they need to be treated equally, as one.

This is backed up when you look at how effective my Vagal Nerve Stimulator has been, which I had implanted at the end of 2019. Research shows these devices can improve both mental health and autistic behaviours, on top of seizure control. And for me, this definitely feels like the case. It’s months since I had a ‘full meltdown and almost a year since I began to feel happy again.

It’s taken many years for me to accept myself. Without the autism diagnosis, I spent my entire childhood being labelled negatively as ‘bad’ and ‘naughty’. And for so long that was all I could see. But thanks to my diagnosis (and the support I’ve consequently received) I’m now able to understand why I am the way I am. I’m able to manage myself better and navigate this loud, bright, cluttered world with better efficiency.

I do believe research is headed in the right direction. In recent years I’ve seen a flurry of qualitative and participatory projects. The next step is to start approaching topics from a broader angle. To start researching people and their experiences as a whole, rather than as a list of symptoms that are attached to specific diagnoses. Once this happens, understanding will increase and we can begin to improve and adapt to the world that we live in.


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