When I was a kid I complained to my dad that my legs hurt, we were walking to the local newspaper shop, he told me I was a hypochondriac. I went silent, deep in thought, ‘what was a hypochondriac?’ When I got back home, I looked it up in the dictionary (no google back then) and I read “an excessive preoccupation with or anxiety about one’s health.” I was puzzled, I didn’t recall ever having mentioned anything about my health before, but you can bet that I barely mentioned anything about it ever again. I do often think about this though, and the long lasting effect this had on me. I rarely go to the doctors, I have to be in serious pain to go, even now.
I now wonder how this relates to autism. I believe that my autistic experience can make me appear to be preoccupied and even anxious about my health. Autistic people can have heightened interoception, this is the way we perceive internal bodily sensations. If your interoception is heightened you may feel every little change or sensation no matter how small and then ruminate on them. Conversely, if you have diminished awareness, unclear sensations, may be interpreted as mysterious or serious, causing anxiety.
Alexithymia is a common autistic trait, and is an inability or difficulty in identifying and describing emotions and/or their physical symptoms. Physical symptoms of anxiety could be misinterpreted as evidence of a serious illness, for example a heart problem. Literal thinking could lead to an autistic person believing they have an illness, based on matching a list of symptoms, out of context, I myself have fallen foul of this.
I need to be in control and I think many autistics feel this too, being prepared or being able to predict things is a common self-defence mechanism. Your health is something that is difficult to feel control over, it is possible that focussing on physical symptoms, is a way to feel some control and to give you knowledge, which is always something I desire, and which can help you to feel prepared for what is coming.
Sensory sensitivities may affect autistics perception of their health too. I have a high pain threshold and even when I’ve broken bones, the pain barely registers, but when I stub my toe or finger, it is like the end of the world! Sensitivity to pain, to me at least, is very unpredictable. What some feel as a minor discomfort, others feel as overwhelming pain, that makes them feel something is seriously wrong. My experience at Accident and Emergency showed me that because I didn’t ‘show’ pain, or cry I was not believed, I was asked to rate my pain on a scale of 1 to 3, where 1 was mild and 3 was life threatening. This told me that I was being treated differently, the ‘scale’ is 1 to 10. Another common comorbidity with Autism is anxiety, these go hand in hand. If you’ve ever had a bad experience with your health or a health practitioner, then the anxiety caused will soon manifest itself to add to your health worries.
Communication differences are another factor that comes into play here. If you can’t explain what you’re feeling, or your body language doesn’t match your perceived experience, health workers may find it hard to grasp what’s wrong, and at worst may not believe what you’re trying to tell them. If you keep insisitng and explaining, you can soon be seen in the realms of a hypochondriac, when all you’re really trying to do is be understood. If a health professional has previously dismissed you and your concerns , you could react by being overly cautious or overly assertive and then be seen as making a fuss or worrying disproportionately.
So if you’re autistic, your neurology may shape your responses in a way that could be perceived as being a hypochondriac, to outsiders, while you are, in fact, experiencing very real internal signals, sensory experiences or anxiety. You are not over dramatising or attention seeking, but this can be how you are seen, which can be very frustrating.
Work needs to be done to educate health professionals that not everyone will show their pain in the same way. You can’t judge a book by its cover, as the saying goes. If you treat everyone with compassion I think that would be a great first step. Don’t you?
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