When Symptoms Cannot Be Described in Words

How do you find out what is physically wrong when a non-speaking, profoundly autistic person cannot describe their symptoms? The most important clue is what has changed.

I have often thought about how difficult it really is to work out what is physically wrong with a non-speaking person with profound autism. At an ordinary medical appointment, people are asked where it hurts, what the pain feels like, when it started, whether it radiates, whether they feel dizzy or nauseous, whether light or movement makes it worse and what makes it better. If a person cannot answer those questions, a large part of the usual diagnostic process disappears immediately.

What remains is what other people are able to observe. Has their behaviour changed, are they sleeping differently, are they eating normally, are they seeking quiet more than usual, has self-injurious behaviour increased, is there something different about their movement or balance, are light or sounds bothering them more than usual? If they use pictures or another communication method to indicate pain, that gives more information, but even then they may not be able to explain whether the pain in their head is throbbing, whether they feel dizzy at the same time or whether something strange is happening in their vision.

Over the years, people close to them learn to notice very small changes, but that still does not make anyone a mind reader. Biting a wrist can mean pain, overload, frustration or something else entirely. Increased restlessness can come from a bad night’s sleep, constipation, the beginning of an infection, a headache or simply a day that has been too demanding. Sometimes the reason becomes obvious quickly, and sometimes you realise afterwards that you were completely wrong.

There is another problem that does not exist in quite the same way for an ordinary patient: autism offers an extremely easy ready-made explanation for almost anything.

If a profoundly autistic person starts behaving differently, it is very easy to start talking about overload, sensory sensitivity or challenging behaviour before anyone has properly considered whether something might simply hurt. And because pain itself can increase sensory sensitivity, restlessness, aggression and self-injurious behaviour, these things can look very similar from the outside.

That is why you sometimes find yourself thinking before a medical appointment about the order in which things should be explained. Overload and autism-related factors should not be hidden from the doctor. The point is that the whole picture of symptoms should not disappear underneath them before physical causes have even been considered.

Perhaps the most important information is what has changed from that person’s own usual baseline. If someone has always bitten their wrist, been restless or had certain repetitive behaviours, what matters is whether it is happening more often now, whether it is triggered by smaller things or whether something has returned that has not been seen for years. A parent or another person who knows them well may not be able to say what illness they have, but they can often say very clearly that this is not their usual state.

Finding a physical cause can still be slow and frustrating, because investigations cannot always be carried out in the same way as they can for other people. But being non-speaking should not raise the threshold for investigating symptoms.

When a person cannot describe their own symptoms, we have less information to work with.

That is when we need to look more carefully and assume less.

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© Satu Väänänen, Borrowed Peace 2026