Woman in Pain on sofa

Adding Insult to Injury

When it comes to our fellow human beings’ lives, the impact of our actions can be damaging, even if we had the best intentions. So it is true with sensory experiences and sensory processing disorder and parents, carers, teachers, therapists, and even the medical profession trying to help when, in fact, they are harming. I read with great interest Autistic Science Person’s blog post earlier this week on “Autistic Sensory Pain and the Medical Consequences”, in which the gaslighting of autistic individual’s sensory sensitivities can lead to poor physical health and adverse medical outcomes.

We learn in the post that physical pain and sensory pain are not different for autistic individuals. Loud noises can feel ‘like my eardrum is being stabbed with a knife’, similar to how neurotypical individuals might feel if someone screamed or blew a trumpet through a megaphone directly into their ears. I believe my son Lumen experiences this with several sounds: babies and children crying, sizzling sounds on the hob, hand vacuums, fire alarms, mopeds and motorcycles racing past, leaf blowers, and construction drilling, among other sounds. He winces and sometimes runs off faster than Usain Bolt and other times crawls into a fetal position with his arms over his head. When I can even hear these sounds coming from the direction we’re heading, I immediately turn in the opposite direction. Or I attempt to shield him with my coat – despite him already having ear defenders on – to further muffle the noise.

Not acknowledging this sensory pain in our autistic children, adults and friends can have dire consequences for them, including them ignoring their own pain for fear others think they are exaggerating. And eventually they may ignore actual physical pain because if those around them deem them to be lying about or embellishing their sensory pain, why would they not do the same for their actual physical pain? When internal experiences are dismissed externally, autistic individuals are taught to dismiss them themselves. In the post, two autistic individuals shared that their cancer progressed to a later stage because they didn’t trust their own pain perception due to previous experiences of not being believed.

Validating, not denying or downplaying, autistic individuals’ sensory sensitivities can translate into the prevention of pain, trauma, and certain medical diagnoses. I would not dream of telling my son he is fine, when is visibly behaving as if he is not. If he even seems mildly distressed from sensory input – sounds, scents, lights, temperature, textures – I am immediately on the case to find out the reason to ease any pain he may be feeling.

Every human being’s discomfort and pain is significant, but especially so with autistic individuals as, like my son, they may not know how to express they are in pain. I only learned of his physical discomfort when wearing certain shirts because he would cry whenever I started to put a shirt over his head. I assumed it might be because he knew he was going outside and didn’t know what to expect when we went out or perhaps he didn’t like anything covering his head, even momentarily, or was just too hot with clothing on. After trial and error and testing different shirts, I realised it was the fabric, tags, and seams.

Being present, recognising and believing any distress, and acting on it may prevent meltdowns caused by pain, save trips to the hospital, assist in averting future health complications, and ultimately, save a life.

Lead image by Sora Shimazaki, used under creative commons.


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