Mooching around the blogs in a quiet moment at work, I turned up this:

 She knew from talking to me that Timmy was ill.  By the time he died, he had been in a coma in the pediatric intensive care unit for 10 days, hooked up to tubes and wires with beeping machines and bags of fluid at the end of them.  She asked me how he was doing, and when I told her she just looked at me for a second.  I guess she had been expecting a different kind of update.  She put her arms around me tightly and I just stood there, stiff as a board, not knowing if I was supposed to hug her back or not. […]It’s a pervasive pattern of mine – I guess they don’t call them pervasive developmental disorders for nothing – to just stoically endure something rather than saying anything about it.

– From thoughtyautie.

When my father was dying I told no one. It probably didn’t help that neither of my parents spoke to me about his (obviously terminal) illness, but I had no idea of how to speak to anyone about it, how to ask for comfort, even that I was entitled to comfort. I was sixteen years old.

In fact, looking back, I realise that I have never asked for what would be described as ‘comfort’ by neurotypicals. No hugs, no space to talk, no one to acknowledge my grief. I cried myself to sleep every night for nearly two years, and it was over a decade before I could say the word ‘father’ aloud. But to ask for some acknowledgement would be – wrong. And the reasons why it would be wrong are hard to unpack.

Perhaps in part it is the logical part of my mind that makes things difficult. I can’t simply be upset without policing myself for the tiniest shadow of ‘wrong’ behaviour. If I catch myself wanting to be comforted, that immediately negates my distress – my emotion is no longer ‘pure’, but tainted by the hope that someone will notice, will respond. And distress exhibited in the hope of response isn’t distress at all, but a selfish demand of other people to notice me! Look at how upset I am!

Somehow neurotypicals seem to navigate this minefield of emotion without feeling guilty for the demands they place on others. I have no idea how they do it. And they seem to feel comfortably entitled to responses from others around them, without second guessing themselves.

How do you say yes, I am upset without giving way to attention seeking behaviour? How long are you allowed to be upset for, and if someone sympathises, how do you show gratitude towards them?

When I read about autistic children, I read about how they react to distress, how they protest and yell and throw things and tell you (somehow) that they don’t feel right.  These behaviors make them noticeable.  It’s obvious they are experiencing intense distress.  This is one of the things that makes me wonder in a let’s-torture-myself-with-self-doubt-and-over-analysis kind of way about my own diagnosis, because I read about them and think, “why the hell didn’t I think of that?”  No, seriously, why?  Internally, my reactions were the same as theirs, but I didn’t know I had the option to do anything but suffer in silence, and I say that with 100% honesty.  The thought to actually react to things, to let my distress be known, simply did not cross my mind.

Me too. When the bad stuff happens, I withdraw. I go quiet, and externally I am in lockdown. Inside is different. Inside are feelings that even now I struggle to describe.

Autistic children are often described not just as having no emotion but also as having an abnormal pain response, sometimes failing to demonstrate when they are in quite severe pain. My speculation is that this is due to a combination of things:

  • Pain may be a proportionally smaller part of their sensory load when compared to neurotypical children
  • Communication and body language difficulties make it difficult to learn ‘normal’ pain behaviour from others
  • Experience has taught them that demonstrating pain will not gain a sympathetic/empathetic response from those around them, especially if their pain behaviour has not been ‘normal’ in the past.

[this is a good post on pain behaviour, if you haven’t met the term before]

Of course, if you replace ‘pain’ in the above with ’emotional distress’, the end result is the same. And when it comes to things like grief, depression, anxiety and so on, exhibiting these emotions in the ‘wrong’ way, failing to respond appropriately to approaches from neurotypicals, clumsiness in reciprocity, all add up to a very negative experience for an autie. When you’re already feeling pretty grim, the last thing you need is to add to that, and experience tells many of us that nothing positive results from demonstrating our emotions.

What do you do when distressed? Do you have NT friends who understand enough to help you reach out to them?