Suppose you were undergoing a medical procedure and you were aware the medic was doing something that was causing you a serious problem. Suppose you’d tried to draw their attention to what it was but they weren’t listening because you didn’t express yourself in the way they expected? Sadly that’s not an uncommon experience for autistic people. The supposedly universal human communication of things going badly wrong is to scream – but for an autistic person their response may be to shut down, or to go hyper-reasonable, bland and logical. You can just imagine how a doctor might be a bit wrong-footed. If the patient said: “I’m really sorry but the anaesthetic doesn’t seem to be working and I can feel you putting the stiches in – would you mind using some more local anaesthetic?” the doctor would most likely imagine they weren’t really in pain. If you can speak calmly like that, you’re not really in distress, they would think. Sadly, that doesn’t work if you’re autistic.
I attempt to make this blog about my own experiences but sometimes I have to go a bit broader and that example I just gave actually happened to a friend and colleague of mine. Mercifully this is a very intelligent, self-possessed person and when the medics refused to listen to them they worked out that the only way to communicate their situation was to scream; they screamed and the medics got the message. But they were only in moderate distress – and still able to think clearly how to translate into “neurotypical”. Suppose they weren’t? You can see how being disbelieved because you’re not expressing distress in an expected way can cause a major problem.
I shared a previous blog about autism and pain on social media and got a big response from people who’d had children. Even among a comparatively small sample (autistic professionals that I know) it seemed that every one who had given birth had a traumatic story to tell about their pain not being listened to. This isn’t because the doctors and midwives were doing anything wrong – they were just using the criteria they use for assessing neurotypical experience and they don’t always transfer well to autistic people. More than one colleague had her baby on the ward because doctors couldn’t believe she was about to give birth since her symptoms didn’t seem intense enough (i.e. she wasn’t reacting like a neurotypical person). Others were denied pain relief because they “sounded too composed” when talking about what they were experiencing.
Reflecting on my own experiences I’m aware that expressing physical pain feels to me like just one more communication that has to be managed. As a child if I injured myself I instinctively hid the injury because I could cope with my own sensations or other peoples’ reactions, not both. Then I learned that if you conceal an injury you tend to get found out and then people react even more, putting even more strain on your abilities to meet social norms. So a socially acceptable response to (say) falling over in the playground was the best way to minimise attention – you had to endure a certain amount of people insisting on communicating but that was the least you could get away with.
If you’re autistic, you may be quite used to things seeming to be your fault, and prone to mis-identifying the underlying issue because perhaps you’re not great at identifying sensations. You may be used to rejection and sensitive to it, and all those things make it harder to stand up for yourself and believe in yourself. All of those things could make you doubt yourself and defer to others rather than stand up for yourself. So you’re probably going to just endure whatever the world throws at you rather than believe in your own perceptions enough to insist on help when others instinctively deny it. Sadly, all too often you need to be able to speak “neurotypical” to be heard.
Autistic Civil Servant 
Oh the poignancy of this!
I gave birth to my daughter, when undiagnosed as Autistic and at the time had no lens for understanding my difference in sensory perception, so the (then unexplained) dissonance in at all with just a confusion to fathom.
My claim that I was in agony, whilst my stoic composure perhaps indicated otherwise, was met with an eye roll, until an examination supported my statement.
It remains unfathomable to me that my word; my declaration of my own physical sensations and sensory distress is insufficient testament to my experience. It just blows my mind!
Also, when my daughter was a young child, I had to play the role of a ‘Neurotypical parent’ to an Oscar winning degree to ensure that her pain and distress was treated credibly.
I know far more about medical matters than is probably normal, as I quickly learned that I needed to be well-read and use the key terminology in order to gain credibility in circumstances that presented themselves as uncommon.
I have held the gaze of many a medic (as I felt my soul was being stared into) as I watched them rate my credibility and rate the accuracy of my advocacy for someone too young and vulnerable to self advocate.
This subject matter is vitally important. Autistic life’s already pretty complex,. The need to be believed firstly, and then to be assessed and treated with different metrics is ever important and you could not have raised a more important subject here.
Thank you.
LikeLiked by 1 person