Chronic pain or Chronic complaining?

There are many reason why neurodivergent children (and adults) experience chronic or frequent pain. If your child expresses that they are feeling pain, please don’t assume they are being attention seeking or hypochondriacal, or imagining it. While the experience of pain, or the expression of it, might differ to neurotypical behaviours, it is no less valid. Especially given the number of perfectly rational explanations ND people have for chronic pain that neurotypical people are far less likely to encounter. 

Let’s look at 8 of the many potential (and statistically likely) reasons for chronic pain in ND people.

Interoception Disorders

While the focus on interoception disorders is frequently about a potential lack of understanding of the body’s needs (hunger, thirst, full bladder, etc), this is yet another example of the ongoing problem with deficit model applied to neurodivergence.

The truth about interoception disorders is that people with this condition process their body’s signals differently. Not just worse, or less. Differently. 

The flipside of the deficit model means that neurodivergent people have greater insight at times. I have, for example, known I was pregnant before any symptoms or positive tests, been able to tell sonographers precisely where to find the baby’s head long before baby was palpable from the outside, been able to physically feel chest infections to the degree that I can point to precisely where they’ll be, etc.

This awareness means that some neurodivergent people will be more sensitive to physical damage, and will feel it earlier or more strongly than neurotypical people would.

Proprioception Disorders

Proprioception disorders often lead to neurodivergent people bumping their extremities (hips, elbows, shoulders, head, toes, fingers, etc) more frequently. We can find it harder to know where our edges are! People with proprioception disorders generally also trip over more often.

As a result, this can feel like your child “whinging all the time” about various bumps and bruises. But this isn’t any less valid than a neurotypical child who has had one bad tumble during their week, and wants to tell you about it and how much it hurts.

Stimming 

Many neurodivergent kids stim. While this serves a fantastic purpose, it does still require energy and muscle use, and can easily lead to fatigue and exhaustion. Even Repetitive Strain Injury!

Just because this is “self inflicted” it doesn’t deserve any less sympathy than any sports injury, or strain from any other activity. Would you help a child who was in pain from running a long distance race, or practising their baseball pitches for a little too long?

Connective Tissue Disorders and Scoliosis

There are a number of physiological differences observed in many neurodivergent people, including connective tissue disorders, scoliosis (curvature of the spine), and the abnormal posture seen in people with ADHD due to inactivity of stabiliser muscles.

You may have been told your child is “hypermobile”. There is a high correlation between neurodivergencies such as autism, and connective tissue disorders. 

Ehlers-Danlos Syndrome (EDS) are a group of these disorders, largely related to issues with collagen; neurodivergent people are far more likely to have EDS than neurotypical people.

Ligaments exist to prevent joints from moving too much in the wrong direction, or dislocating. People with connective tissue disorders such as many forms of EDS have loose or weak ligaments, leading to over-flexibility. This can cause joint pain, muscle pain, and even frequent dislocations.

Approximately 1/3 of people with EDS also suffer from scoliosis, an abnormal curvature of the spine, which also frequently results in chronic back ache or worse.

People with EDS often suffer from increased bruising, low muscle tone, abnormal scarring, and fragile skin, all of which also can result in injury and soreness.

EDS, Generalised Joint Hypermobility (GJH), and other connection tissue disorders can cause significant chronic pain. Pain in EDS is generally accepted by medical professionals to be common, severe, and linked to impairment.

ADHD Posture

While not largely acknowledged in the medical field yet, there is an increased acceptance of “ADHD posture”. This includes:

• Hypermobility
• Tight hip flexors, erector spinae, and quads
• Sternocleidomastoid (SCM), masseter, suboccipital, pectoral, and rotator cuff tension leading to 
• Anterior pelvic tilt 
• Open abdominals
• Lordosis (swayback)
• Inactive/underactive stabiliser muscles such as deep neck flexors, and serratus anterior (SA); current practice and research is indicating that re-educating these stabiliser muscles into doing their jobs may assist with many of the other issues above.

All of this has the potential to cause significant discomfort or pain, including hypermobile dislocations and subluxations as mentioned above.

MCAS

There is a significant link between Mast Cell Activation Syndrome and Autism too. In fact, mast cell dysregulation is likely involved in 75% or even more cases of Autism

Beth O’Hara, Functional Naturopath / MastCell360

Mast Cells are the “front line defenders” when it comes to allergens; they are white blood cells which release mediators that cause inflammation / an allergic reaction, to make it harder for harmful things such as viruses, bacteria, and allergens, to survive in our bodies.

People with mast cell dysfunction may experience episodes of mast cell activation where the mast cells react in this way to non-allergens (therefore causing what appears to be an allergic reaction, to something they’re not allergic to), or sudden dramatic histamine intolerance (where they are allergic to many more allergens they don’t usually react to).

Symptoms of these episodes can include (and this is the shortlist!):

• Fatigue
• Brain fog
• Migraines
• Anxiety and depression
• Body temperature changes
• Inflammation and swelling
• Generalised pain (muscular and skeletal)
• Hives
• Complexion changes
• Itching / burning skin
• Dermatographia, psoriasis, and eczema
• Heart palpitations
• Low blood pressure
• Diarrhoea, cramping and bloating / IBS
• Nausea and vomiting
• Reflux
• Tight throat / difficulty swallowing
• Congestion
• Wheezing and coughing / asthma
• Vision issues
• Hormone imbalance
• Painful menstruation 

So that’s potentially 75% of autistic people prone to some of the above symptoms, on a semi-regular and unpredictable basis.

Constipation / Megacolon / Reflux

Autistic children are four times more likely to experience gastrointestinal issues than their allistic peers. While this covers a range of issues, and can be physiological, psychological, and developmental, it does mean that many autistic kids suffer from:

• Constipation and encopresis
• Reflux
• Megacolon (the abnormal distension or dilation of the large intestine / colon)

It can be incredibly painful in terms of cramps, heartburn, and sore throat. Leakage from encopresis can result in “nappy rash” type skin irritations. Passing impactions can lead to anal fissures. 

And that’s if it’s just the day-to-day variety. Serious complications from these include sepsis and peritonitis.

Autoimmune Diseases

Studies into autoimmune diseases haven’t extended far into the neurodivergent community itself, though it has been demonstrated that combined familial history of hereditary autoimmune diseases increases the likelihood of having an autistic child by almost 30%. It has also been shown that there is an increased change (compared to allistic people) of autistic people having an immediate relative with an autoimmune disease. But given what is increasingly known about autism and its heredity, what this indicates in that neurodivergence and autoimmune diseases coexist in many people.

Diseases included in these studies include Type 1 diabetes, coeliac disease, hypothyroidism, psoriasis, lupus, and rheumatoid arthritis.

How Can I Help?

If you absorb all of the above, it is no wonder that neurodivergent people frequently present as “always having something wrong”, and are accused of being malingerers, complainers, and hypochondriacs. 

Realistically, if your ND child feels healthy and pain-free, you should be celebrating!

So if your child does let you know about a symptom, an ache, a pain… or even just want to share the cause of each bruise on their shins… listen. It might feel like all they do is complain, but each issue is real and relevant to your child.

Can you imagine if you broke your leg, got a cast, and the next day you broke both your arms but people told you “You’ll be right. Off to work!” because they felt they’d already given you adequate attention the previous day? It doesn’t work, right? So it doesn’t work for neurodivergent people living with chronic pain either.

Please seek medical attention for ongoing issues, or anything causing distress or visible injury. Many doctors won’t be well informed on neurodivergence buddies, like MCAS and EDS, so you might need to raise it with them first. But don’t just accept daily pain and/or illness as part of your child’s life; so much is treatable, or at least manageable.

Need some help patching seemingly random symptoms together so you can approach your GP with a possible direction, or at least the right questions? Get in touch!