From InterAction 116, published Spring 2024
Amy Arthur describes what life is like when you're chronically ill and autistic.
SPEED READ
Amy has had ME of varying severity for 12 years; she is also autistic. It can sometimes be hard to distinguish some ME symptoms from autistic traits (such as sensory overload). Pacing and routine are important for her. Understanding how autism and chronic illness affect each other has given her valuable tools to explain how she feels – and to connect with others.
I’ve lived with ME since I was 15 and, in the 12 years since, I’ve gone from moderate to mild, to severe then back to mild again. I realised I was autistic when I was 24, so I can’t say what impact a diagnosis might have had on my teenage years with ME, but I do know that understanding how the two combine has helped me better manage life with both.
Autism is just one type of neurodiversity, the term that refers to the differences in how human brains work. Those who are neurotypical are thought to process information in the way society expects, while neurodivergent brains work slightly differently. Neurodivergent people could have ADHD, dyslexia, dyspraxia, Tourette’s syndrome, among others.
It’s thought that around 15% of the UK population are neurodivergent, though it’s unknown how many people with ME/CFS also have neurodivergence. A 2023 study suggested autistic people have higher rates of chronic illness, while another from 2019 found that 76.6% of women diagnosed autistic or with ADHD had chronic pain.
There’s quite an overlap of autistic traits and ME symptoms, so sometimes it’s hard to know which of my problems on any given day can be attributed to my neurodivergence and which are my ME. I struggle regularly with sensory overload: my clothes feel wrong or there’s too much noise.
Even giving my partner a hug can make my stomach twist, but is that because my body’s in too much pain to be squeezed, or because I have a slight aversion to touch, something thought to be more common in autistic people than in non-autistics?
I suppose it doesn’t matter why I have these symptoms, only that I’m able to recognise them in myself and put in place ways to alleviate some of their burden. Being upfront about hypersensitivity to noise and light means that the people around me can adjust. Meeting two or three people at a time is much easier to tolerate than large groups, for example.
Identifying these issues has taken me a long, long time. I don’t find it particularly easy to pinpoint the location of pain in my body, nor to find the right words to describe the specific way brain fog presents.
This might be connected to my neurodivergence; as disabled writer Charli Clement tells me, autistic people might be hypersensitive or hyposensitive to certain body signals, which can make it harder to recognise and regulate symptoms. “For example, I don’t receive thirst signals, but have to drink more water to support my POTS,” says Charli, author of All Tangled Up in Autism and Chronic Illness. “I have to put measures in place to make sure I drink regardless of the signals – like having bottles of water with straws everywhere.”
Some neurodivergent people experience hyperfocus, a state that arises when we engage with certain activities. For me, hyperfocus is complete absorption in what I’m doing – a welcome break from the busy, brain-fogged mind I deal with on a daily basis.
Hyperfocus can be a positive and a negative. If I’m highly focused on a task, I’ll lose track of the time and energy I’m spending. This makes it difficult to pace properly, so I have to plan for rest breaks in advance to make sure I don’t overdo things, leading to PEM. It’s frustrating when my ‘take a break!’ alarm goes off when I’m in an enjoyable, hyperfocused-state, but I know that it’s better for my health in the long run.
My desire to dive deep into whatever is currently interesting me has helped me in life. I can put a lot of time and energy into reading research papers and articles by scientists, which makes my part-time job of a science journalist ideal for me. It also means I can keep on top of all the latest studies and developments in ME/CFS research, though I have to carefully monitor my emotional energy while reading about my own condition.
One thing that really appeals to me is a set routine. I don’t like unexpected change (especially if it demands a lot of my energy). I can get a bit anxious when I have days without a plan.
Structured pacing, then, is something I have been able to implement quite well. The need to plan things in advance satisfies my desire for a predictable day-to-day routine, though there are times when I’m exasperated by having to plan everything. Even the most well-paced week can be pushed off course by a sudden flare-up or event, I know, but I’m grateful that at the moment these aren’t too frequent.
Pacing can be difficult for some autistic people, Charli points out. They explain that a different approach to pacing, like focusing on activities that use different types of energy rather than trying to balance every activity with enforced rest, might be more efficient. This ‘energy switching’ is something podcaster and journalist Natasha Lipman talks about regularly. (This might also help those with ADHD who’ve struggled in the past to engage with ‘inactive’ forms of rest.)
Understanding the way my autism and chronic illness affect one another doesn’t just help me live with them both. It’s given me language to use with the people around me to explain how I’m feeling. It’s also opened up a large online community that gives people like me support, a shoulder to cry on, and a place to share concerns that ‘neurotypicals’ might not appreciate.
Amy Arthur is a disabled science journalist and author of Pace Yourself: How to have energy in an exhausting world.
This article can be found on p 26 of the Spring 2024 issue of InterAction, Action for ME’s membership magazine. For further information on becoming a member, click here.
