One of the hardest questions in intellectual disability psychiatry that I have found myself grappling with over the past year as a registrar in the subspecialty is surprisingly simple: Is this person in pain?
Most people assume pain announces itself clearly. A broken bone hurts. A toothache hurts. An infection hurts. The body sounds an alarm and we respond. In practice, as I have encountered time and again, it is rarely that straightforward.
I once met a young person with autism while working in another service who continued attending ballet classes despite a fractured toe. The toe was swollen and blue-black with bruising, yet she continued dancing.
At first glance, the explanation seemed obvious. People with autism are often said to have a high pain threshold. The phrase is so common that it has become almost accepted wisdom among clinicians, caregivers, and families. We encounter individuals with autism who appear remarkably unaffected by injuries, illnesses, and discomforts that would stop many of us in our tracks. Yet I have never been entirely satisfied by that explanation, partly because it feels too simple, and partly because psychiatry has taught me to be suspicious of simple explanations.
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Every day, psychiatrists attempt to understand experiences we cannot directly observe. I cannot see depression on a blood test. I cannot measure grief with a thermometer. I cannot hear another person’s hallucinations. And I cannot experience another person’s pain. All I can do is infer.
Most of the time, those inferences are made easier by language. A patient tells me they have a headache. A patient points to their abdomen. A patient describes a sharp pain in their chest. The body produces a sensation and language translates it into something that can be shared. But what happens when that translation is incomplete?
In intellectual disability psychiatry, I often find myself wondering whether a sudden behavioral change represents psychological distress or physical illness. An individual who has been calm becomes aggressive. Someone who usually enjoys activities begins refusing them. Sleep deteriorates, self-injury increases, and distress appears to emerge from nowhere. Caregivers and families may understandably assume the problem is psychiatric.
And then, sometimes, the answer turns out to be constipation. Or a dental abscess. Or an ear infection. Or an ingrown toenail. The behavior was never the problem. The behavior was the communication. It is one of the lessons intellectual disability psychiatry has repeatedly taught me, and one that I now find myself passing on to medical students in my limited role as a clinical tutor.
This is one of the reasons I have become increasingly interested in the concept of interoception: our ability to perceive and interpret signals arising from within the body, including hunger, thirst, fatigue, temperature, and pain. Many individuals with autism appear to process these internal signals differently. Some struggle to recognize hunger until it becomes overwhelming. Others find it difficult to distinguish anxiety from physical discomfort. Researchers are increasingly exploring whether differences in interoception may help explain some of the unusual findings surrounding pain in autism.
Perhaps some individuals with autism genuinely experience pain differently. Perhaps some experience it typically but express it differently. Perhaps some recognize that something is wrong without being able to identify exactly what. The more I read, the less convinced I become that there is a single answer. Yet what interests me most is not the science. It is the uncertainty.
The ballet dancer with the fractured toe remains in my mind years later, not because she proved that individuals with autism have a high pain threshold, but because she reminded me how difficult it can be to know what another human being is experiencing.
As psychiatrists, we spend much of our careers learning to listen. Working in intellectual disability psychiatry is now teaching me that listening is not always about words. Sometimes it means paying attention to behavior. Sometimes it means noticing what has changed. Sometimes it means asking whether the aggression, withdrawal, or distress we are witnessing is not a psychiatric symptom at all, but a body struggling to communicate something it cannot easily say.
Perhaps the real question was never whether individuals with autism feel pain. Perhaps the real question is how we recognize suffering when it does not look the way we expect. And perhaps that question extends far beyond autism. After all, every one of us relies on other people to recognize our suffering at some point in our lives.
The challenge is that pain is always private. We can only ever glimpse it through the clues people leave behind. The ability to recognize those signals within ourselves is known as interoception. Turned outward, perhaps it becomes something else: empathy. In intellectual disability psychiatry, I am learning that both are essential.
Loshi Rajen is a psychiatrist in the United Kingdom.
