Neurodiversity and Fatigue
As someone who was diagnosed with Autism pretty late in life (in my forties), understanding how this has contributed to my fatigue condition (ME/CFS) has been really insightful. As the cliché goes, it was like discovering a missing piece of a jigsaw which then gave a completely different picture of my life. I have had to reframe my life experiences in light of this new knowledge, whilst I am still exploring what it means. There isn’t a standard way that autism manifests for people so it’s important to remember that it very much affects people in distinct ways.
Neurodivergent refers to anyone who functions in a way that diverges from dominant societal norms, standards and expectations.
Sonny Jane Wise at @livedexperienceeducator
I now see though, that the autism was actually at the root (as I perceive it) of issues that I developed in my life, from mental health struggles to my ME/CFS diagnosis 21 years ago. For example, developing tinnitus - which is a perpetual ringing or other sounds in the ears - at the unusually young age of 14 is to my mind now, indicative of the kind of strain that someone who is neurodivergent can be under in the stimulus of our modern world. I recently read this helpful article which describes something called ‘exteroception’ and I hadn’t come across this being described in terms of a heightened sensitivity to other emotions as well as external sensory experiences.
“We have long recognized that a characteristic of autism is an extraordinary perception of sensory experiences from the external world which we describe as exteroception sensitivity. This can be a heightened sensitivity to sounds, light intensity, tactile experiences, aromas, and tastes. We speculate that exteroception may include a sensitivity to the emotions of other people. An extraordinary ‘sixth’ sense can be a response to being with someone who is experiencing negative emotions, but also responding to suffering on television news and in documentaries far more than is typical.”
When I was diagnosed with ME/CFS, autistic burnout wasn’t something that people were aware of, and besides I didn’t have this diagnosis back then. I do now see this heightened sensitivity to the environment as a central conditioning factor, increasing the likelihood that my nervous system would struggle and the high possibility of becoming deregulated - especially as I was also under considerable chronic and sustained stress. ME/CFS is often referred to as being a faulty alarm system with the body’s systems not recovering from a virus normally (in my case chicken pox) and becoming overly productive of post-viral warning symptoms such as fatigue.
There isn’t an official diagnosis for Autistic Burnout. These lists below, from the work of Dr. Alice Nicholls illustrate the overlap with symptoms of ME/CFS, and are aligned with our team’s current clinical understanding.
Autistic Burnout is a common set of symptoms described by people within the Autistic Community. These include:
Physical symptoms including extreme fatigue
Cognitive symptoms including difficulty thinking, processing information or concentrating
Executive functioning symptoms including difficulties with planning, organising and sequencing tasks
Social symptoms including finding social contact more difficult or draining than usual
Emotional symptoms Increased difficulty managing emotions, feeling overwhelmed or ‘bad’ an increase in meltdowns and/or shutdowns
Sensory symptoms Increased intensity in, or awareness of, sensory aversions. Increased need to stim or decreased effectiveness of stimulation seeking behaviour to regulate sensory experiences.
Autistic Burnout is not an official diagnosis. People self-identify as someone in Autistic Burnout when they are Autistic, or suspect they are Autistic and are experiencing the symptoms of Autistic Burnout listed above.
Given the significant overlap in symptoms, someone who repeatedly presents to their GP with symptoms of Autistic Burnout may well be diagnosed with CFS/ME.
Myalgic encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) is a long term condition with four main symptoms:
Extreme fatigue
Sleep problems (too much or too little, not feeling refreshed after sleeping)
Problems with thinking or concentrating
Symptoms get worse after physical or mental exertion (sometimes called Post-Exertional Malaise or PEM)
Some people also have pain in different parts of their body or ‘flu-like symptoms such as high temperature, aches and pains.
ME/CFS is a diagnosis made when all other potential causes of these symptoms have been ruled out and the symptoms have not resolved after 3 months.
Top down and bottom up thinking
I recently read a fabulous description of how it can be for someone who is neurodivergent who enters a restaurant compared to someone who is neurotypical.
A distinction drawn by Gibson in 1966, describes how most people process information in a top-down way. This means that when faced with a situation, they will start with the context of the situation as a whole - that they understand from piecing together their experiences and understanding of similar situations and work downwards. So if, for example, they were to walk into a restaurant, their brains would go, ‘ok. we are in a restaurant? I know what this means!’ and they would prick out pieces of information as they needed them. For the most part they would be blocking out all the sensory input going on in the background that wasn’t important to them. Their brain would have turned down the volume of the conversations happening around them and the squeaking of somebody’s chair, turned down the smells of all the different dishes on the tables around them, and ignored all the different signs dotted around the walls that they didn’t need to read just yet. They start at the top, the context, and work downwards to fill in the details of the situation that they need.
For those of us who are bottom-up thinkers (which happens to often be the case for autistic people), the opposite happens. Gibson argued that perceptions in the bottom up process take in the raw sensory stimulus and piece it together to work out what is going on. If we were to walk into the same restaurant we would start at the bottom and take in all the different sounds - the squeaky chairs, the clashing conversations, the pans clashing in the kitchen and the music playing in the background. We’d take in all the visual stimuli - the different dishes being carried to tables, the specials boards on the wall, the signs for the toilets, the artwork on the walls and the people at each of the tables. A neurotypical person can focus solely on the conversations they are involved in, and turn down all the background noises so that they are able to concentrate, whereas an autistic brain receives all the different sound waves, all at the same time, all at the same volume!
Middleton, E.2023
When I read this description, it resonated very keenly and helped me to understand just how and why interacting in the world can be incredibly tiring at best and completely overwhelming at worst. It also explains why working from home, in an environment I can control, as apposed to a busy noisy office, is how I work best. It also helps me to be more aware of the fact that I often need to ask lots of questions in order to help me process and understand context, for example around task requests at work.
Masking is tiring
Meanwhile, expending energy unconsciously masking in order to ‘fit in’, for example by behaving in a restaurant such as described above without exhibiting any signs of confusion or strain for fear of being ostracised or perceived as ‘difficult’ or ‘weird’. It has taken me 53 years and my autistic diagnosis to be able to say to friends that I can’t meet them in certain cafes for example, or do certain activities like going to music gigs with crowds. Middleton describes masking like this in her book:
If a tree in a forest grows on a cliff edge, for example, it will grow at a ninety-degree angle to get the sunshine it needs to survive; similarly, if an autistic person groups up in a world designed for neurotypical people, they will mask in order to have their needs met and stay safe. The tree grows in a way that can be dangerous for it in the long term and unconventional compared to how it is supposed to grow, but in a way that is essential for its survival in the short term. Masking is tiring, exhausting and damaging but because it is constantly rewarded (consciously or unconsciously) by those around us, it can be very hard to change this behaviour.
Masking is tiring: studies have shown that masking uses up valuable energy resources that could otherwise be used elsewhere, and in other studies that have interviewed autistic people about their masking, many participants reported severe emotional consequences, including exhaustion.
Middleton, E.2023
More than ‘just a chat’
For a neurotypical person, a chat is just that - a quick conversation, maybe an introduction to each other, maybe you’re deciding on something. But for me, ‘just a chat’ can take more energy than the hours of training I once used to deliver at work. When we have ‘just a chat’ I have to navigate masking, scripting, social cues, knowing when to speak, eye contact, auditory processing, sensory input and overstimulation…all at once. Again, this is why working from home is supportive because I can largely manage how much interaction I am doing and prioritise my work tasks in response to my energy levels following meetings online.
Autistic Burnout
In a 2019 study on autistic burnout (when an autistic person experiences chronic exhaustion, loss of skills, and reduced tolerance to stimulus), one participant explained the following:
the metaphor I use is long-term camouflaging and masking leaves behind a kind of psychic plaque in the mental and emotional arteries. Like the build-up of physical plaque over time can result in a heart attack or stroke, the build-up of this psychic plaque over time can result in burnout.’
A participant in this 2019 study on autistic burnout
Decompression time is essential I find, with periods where I literally draw the curtains, unplug my phone and rest. It perhaps isn’t difficult to see how much all of this masking would contribute to mental health issues such as depression or social withdrawal and ultimately issues with sustaining work or relationships.
I was discussing autism and fatigue with our Managing Director this morning and she reported that an ever increasing proportion of our clients who comes to us for help with fatigue are also presenting with neuro-divergent diagnosis. I hope that like me, they too find the dual diagnosis helpful to frame their symptoms and to better understand the causes and conditions’ of their fatigue.
Do get in touch with us and book a free 15 minute appointment if you would like to find out how our rehabilitation approach might help you.
Written by Katherine Sewell