My Chronicles of Autism - Let's talk about shame

I want to talk to you about shame.  The shame that is forced upon me by – and here’s the irony – the shameless judgement, cat calling and ignorance that people heap upon me when I am out and about with my grandson.   This is a child of seven with a variety of complex conditions, a vulnerable, loving, energetic, kind boy.  Yes, he is loud and chaotic too, and he doesn’t always behave in a way that makes people feel comfortable but is that a reason to keep him locked away?

My grandson is a deeply sensitive boy and whilst he may not be able to speak with the same level of coherence as other children his age, do not assume he does not hear what you say about him, feel the hurt that is thrown at him, and react to it with despair, upset and self-harm.  These behaviours, although shocking if you are confronted with them, these behaviours are his words. They are his response to the disdain, the hate (yes, I said the hate word), the ignorance and the hurt he and I experience when we are out in public together.

Last week, I took my grandson to a café in a lovely little coastal town not far from where I live.  It’s a very upmarket place, full of well-heeled middle class people.   My grandson announced his arrival by throwing the door open and telling them all to “f*$k off”.  Now, I accept is not a usual greeting for a fine and sunny Spring morning in suburbia, so he did raise a few eyebrows by his choice of greeting but hey, he can’t control it.  Once the word “f*$k” is in his head and out of his mouth it’s like he has it on a constant rewind and repeat, it can go on for hours, over and over again.   I don’t enjoy it, it does cause me to shrink and my shoulders to lift but he can’t stop it, even if he tried, he couldn't.  It’s a bit like a verbal tick, an itch you scratch and keep scratching.

I’m pleased to say we sat next to two young women who handled him perfectly.  Far better than the people opposite who were trying very hard not to spill their disdain onto the floor.   The women didn’t nervously laugh at him whilst wondering what he might do next and hoping he didn’t speak to them, they didn’t scowl at him with disapproval, they didn’t encourage him, nor did they seek to make him or me feel bad. They kept on doing their thing, and they sent over reassuringly warm smiles to me and to him.  Their body language to him was positive and they helped me by maintaining a firm boundary between our space and theirs, supporting me to keep him focussed on the activities I’d brought along to entertain him whilst I tried to enjoy a nice frothy cup of coffee.

On our way out I thanked them for their patience with him and they said something along the lines of “hey, no problem, can we just say what a grand job you’re doing” and that was all it took for the floodgates to open and an all too familiar choking feeling to hit my throat.  I scurried out of the café, made it to the pavement, and we walked to the car as I battled to hold back tears all along wondering why such an intense response to what was a fairly innocuous comment, a kind comment.

I’ve pondered on it ever since it happened.  I realise now, after a particularly hurtful and ill-informed debate yesterday with a stranger about sugar and additives causing autism (oh yes, they went there) that it’s very easy to be angry with people when they are mean to us, when they say hurtful things to him, because it leaves me with a feeling of rightful indignation.   It’s easy to fight for what I need for my grandson when he is denied his rights or is treated unfairly, it leaves me feeling righteous.  And it’s easy to sit stubbornly in the disdain of people’s ignorance although I will admit that last one takes some practice.

I experience these things almost everywhere I take him, but what is not so easy is to receive is kindness and such well considered tolerance.  Why? Because I am so often on high alert for the meanness of people – and I’m not talking about isolated incidents here, this stuff happens just about every time we step outside.  Kindness, tolerance, help from a stranger, these things are so seldom given to him. This is not our usual experience so when someone shows me and my grandson kindness the feeling of appreciation, relief and emotion I feel is frankly overpowering.  I can only describe it as an uncontrollable reaction akin to a trauma response that overwhelms me.

If you look the word shame up in the dictionary, this is what you will find:

Shame noun (BAD FEELING)

an uncomfortable feeling of guilt or of being ashamed because of your own or someone else's bad behaviour.

My grandson does not behave “badly”.  It can feel bad sometimes, because it’s not typical and so very tiring to manage day in and day out but imagine how it feels for him being constantly wrung out, unable to tell anyone how he feels, what he wants or to have his senses constantly over-stimulated, a barrage of noise and confusion coming at him all day long and on only four or five hours sleep each night.

I’m not a fool (I hope), I do understand why people may perceive his behaviour to be “bad”, and I understand if they are sat in a nice coffee shop on a sunny Spring morning they may wish he wasn’t there swearing like a merchant sailor – it’s a human response, I get it.  But if this is you, please try to remember his behaviour, his outbursts, his loud laughter, and his jumping up for joy – these are all a form of communication.  It is the way he tells me how he is experiencing the world.   Tutting, huffing, pointing, making barbed comments, and citing something you read “just the other day” in the Daily Mail about why I shouldn’t be feeding him chocolate for breakfast, these are things you should feel shame about, and yet here I am again feeling like the worst grandmother in the world because you’re uncomfortable with the noise he's making or disagree with my choices for him.

Know this. I’m also uncomfortable. I do not like that I am feeding him chocolate for breakfast, it goes against everything I want for him. But above all else, know that he is uncomfortable. A small boy of seven in a world he doesn't understand, and that doesn't understand him. Think on that.   Please.  He deserves more.  Others like him deserve more.  And actually whilst I think about it, I deserve more.