Untangling Autism & Chronic Illness

30 Oct

NdC Associate Charli Clement shares their experience of Autism and chronic illness. Chalri is the creator and facilitator of our new course, Untangling Autism & Chronic Illness, running from 14th January 2025.

The first time I spoke with a doctor about what I now know is my chronic illness, I was ten years old. I was pushed from hospital department to department for seven years before I received the first of my chronic illness diagnosis, and amidst it all, discovered I was also Autistic.

None of the leaflets I was ever handed, with the condition’s name splashed across the front alongside some clinical stock photography, quite made sense to me. The way they talked about the feelings of pain, fatigue, or temperature regulation didn’t align to how my body felt it; all the Autism resources didn’t seem to make sense for me, either. It took years before I would even begin to be able to understand the fact that all the different ways my body and brain work are all intertwined, and all impact the way I experience the world.

Being Neurodivergent and chronically ill concurrently is more common than society believes. Whilst research on this is still catching up, recently Csecs et al (2022) found that hypermobility is present in 50% of autistic individuals compared to 20% of the general population, with chronic pain and dysautonomia also being more common in Autistic and ADHD individuals, and those with Tourettes. Another recent study showed that Neurodivergent children were more likely to experience disabling fatigue at age 18 (Quadt et al, 2024). We know there are many other chronic illnesses that seem to come along more commonly for Neurodivergent people, too, like epilepsy.

This research gap means that there is a resource gap, too. This is not an intersection that has been prioritised in medical spaces, nor psychiatric ones, even though it is evident that there is a significantly different experience not only of our own bodies and brains, but of how we interact with society, too – whether that be in employment, education, or healthcare itself.

Most Neurodivergent and/or chronically ill people will leave a doctor’s office with a new label and little else. They won’t be referred to anyone else who could help them, because their condition is lifelong, so acute services couldn’t possibly help! They won’t get access to their community, because there hasn’t been any funding given for that. They won’t even be given any time or space to process or understand what this new diagnosis means for them with their doctor, even though it has likely shifted their world on its axis.

For me, taking time to understand the way all of this means I experience myself and the world differently has been life changing. It wasn’t the diagnostic labels or the doctors that made me change my approach to education and employment, understand my sensory needs and my pain, or learn how to take joy and pride in being disabled – it was space, time, and community.

We shouldn’t have to pick apart academic research or search websites that make reference to us once in order to find knowledge and support, it should be easily available. We should have access to information and community that isn’t deficit-based, and that doesn’t only focus on making us as able to work as possible, or that just wants us to invest our money in “cures” or “hacks” that won’t change anything. Our productivity and contributions to the economy should not be more important than our autonomy, our wellbeing, and our needs.

I was lucky enough to get to explore many aspects of being autistic and chronically ill in my debut book, All Tangled Up in Autism and Chronic Illness. But, I wholeheartedly believe this is only a beginning – I wanted to be able to give people a concentrated, clear space to build their knowledge about themselves through guided support, alongside others they might want to connect with. That is the hope I have with introducing our new course, Untangling Autism & Chronic Illness.

If you are Autistic and chronically ill (diagnosed or not) and feel it would be beneficial to you to explore these topics in an accepting, open space, you can sign up to the course now for our January intake.

The course will be run with a combination of information being delivered, workshop-style content to help you look inwardly, and discussion time to talk about our lived experiences and connect with others.