Between sensory differences, dysregulation, Spoons, burnout, and many other aspects of being autistic, the symptoms of many other health conditions in autistic people are frequently masked. Add to this the further complication of many autistic people experiencing and/or communicating pain or discomfort in non-neurotypical ways, and many autistic people go misdiagnosed – and thus untreated – for many treatable conditions. They suffer needlessly.
International May 12th Awareness Day
May 12th is the International Awareness Day for Chronic Immunological and Neurological Diseases (CIND). CIND commonly includes Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia, Gulf War Syndrome, and Multiple Chemical Sensitivity. The event also frequently recognises other conditions and neurodivergencies.
Co-Occurring Conditions
Autistic people are more likely than non-autistic people to experience ‘physical health multimorbidity’, meaning that they have at least two or more physical health conditions.
https://www.cam.ac.uk/research/news/autistic-individuals-have-increased-risk-of-chronic-physical-health-conditions-across-the-whole-body
There are many health conditions that statistically are more likely to occur if a person is autistic. The percentage of autistic people with this condition is significantly higher than the percentage of autistic people in the general population.
One group of physical problems colloquially thought to be more prevalent in autistic people are ‘central sensitivity syndromes’ (CSS) including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia syndrome (FMS), migraine, irritable bowel syndrome (IBS) restless legs syndrome (RLS) and temporomandibular joint disorder (TMJD). CSS […] symptoms include fatigue, chronic pain and sensory hypersensitivity.
Autism and chronic ill health: an observational study of symptoms and diagnoses of central sensitivity syndromes in autistic adults – Grant et al https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8842858/
When studies have been conducted on the correlation between autism and CSS, not only has it been recognised that autistic people have a higher rate of CSS than their allistic peers (who have a rate of 0-20%, depending on the CSS), but that a rather dramatic number weren’t even diagnosed in the first place!
21% of participants reported one or more CSS diagnosis, and 60% scored at or above the clinical cut-off for a CSS.
Autism and chronic ill health: an observational study of symptoms and diagnoses of central sensitivity syndromes in autistic adults – Grant et al https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8842858/
Chronic Fatigue or Chronically Fatigued
It can be so hard to recognise the traits of a syndrome such as Chronic Fatigue or Myalgic Encephalomyelitis, when your autistic child’s existence in a neuronormative world and/or the fact they are autistic frequently leads to exhaustion, sleepiness, poor executive function, School Can’t, brain fog, and sensory processing differences. How can you tell if your child is exhausted, or whether you need to seek medical support for them?
The incredible Dr Neff, with Claire-Eliza Sehison, produced the moxst astoundingly comprehensive report on this. You can read it in all its glory here: https://neurodivergentinsights.com/blog/autism-and-health-issues
They also published this wonderful infographic, illustrating the complexity of the mutual experiences and observations of autism and ME/CFS.
If you’re concerned about your child’s exhaustion, see what you can do to alleviate this. Less in the schedule, structured rest, good sleep routines, adequate nutrition, co-regulation, regular check-ins around school and anxiety, etc. If they don’t respond to this with improved energy levels, consider whether a health condition could be at play.
And if they do respond, look at what in this list is sustainable. What is something that can be achieved more frequently to alleviate your child’s fatigue and suffering?
Pain
Many autistic people – myself included – do not present pain in a standard way. Things that should register as day-to-day pain, like banging a knuckle or stubbing my toe, can literally floor me. However during a medical emergency, based on my communication, behaviour, and abilities, my pain levels were assessed as around a 6 out of 10. Once they realised what was wrong, my records were amended to note that I was likely a 13 out of 10 (do not get the autistic lady started on the validity of that scale!).
A Personal Anecdote
As a child I regularly complained about having a backache. In hindsight, it’s clear that I tolerated the chronic pain unless another factor made it the straw that broke the camel’s back. When I was anxious, my back hurt. If I was stressed, my back hurt. When I was angry about something, my back hurt. It must have looked attention-seeking. And when I was regulated and happy, to the outside world that pain disappeared.
It didn’t, really. It was there the vast majority of the time. But just as we don’t complain about our school uniform not being as comfy as pyjamas; or whine that every meal isn’t the sugary, fatty treat that tastes “better”; or whinge on all but one morning of the year that it isn’t Christmas… it was just there, and there didn’t seem to be any use in pointing out to my parents or teachers that it hurt. Of course it did! It almost always did!
Eventually – many years later, and for a different reason – I was diagnosed with scoliosis. But again, because of the way I present pain, and because it wasn’t causing a hump or crushing organs, etc, it was popped in my notes and not referenced again.
Decades later, I needed a chest x-ray. That came back clear, but my GP at the time was horrified to see my spine, and said something along the lines of, “I would expect that degree and position to cause quite serious chronic pain.” I told him it does, and had for about 30 years. That seemed to satisfy him, as it proved him right, and it was never mentioned again.
What Does This Mean for My Child?
A common problem in the autistic community is how often autism is only recognised due to struggles.
An autistic person does not simply have meltdowns. But a dysregulated autistic person has meltdowns.
An autistic person isn’t simply exhausted all the time. But an autistic person who is burning too many spoons, who is unsupported, who has a health condition, or who is masking heavily is exhausted all the time.
An autistic person doesn’t simply hide under the bed. But an overwhelmed, overstimulated, or scared autistic person hides under the bed. (Or one who is playing hide and seek, adds my child.)
So if your child repeatedly expresses or demonstrates a problem that would concern you if they were neurotypical, act upon it. If they constantly complain of a sore arm, get it checked. Do not let a GP tell you “it’s fine” just because they can’t see obvious damage, or because your child isn’t presenting pain in the way the GP would expect.
If your child limps, but tells you nothing hurts, get it checked if it doesn’t improve.
If your child has repeat allergy attacks, has poor gut health, complains of having sore eyes, says they can’t hear properly, under- or over-reacts to things that might cause pain… get it checked.
Unfortunately, aspects of autism such a pain sensitivity can – in some cases – lead to misdiagnoses of health conditions that don’t exist. However, given the under-diagnosis of legitimate conditions, it is always worth investigating.
How Can I Help?
Being autistic does not mean being in pain, having allergic reactions, getting dizzy, or any other physical health symptoms. If you observe these in your autistic child, ask for help, and push if you don’t feel adequate attention is given. You and your child deserve for them to feel as healthy as possible, to aid in their regulation and ability to thrive.