A version of this was also posted on another of my blogs: https://stickyspoons.wordpress.com/2016/07/28/5-crying-over-spilt-milkshake/
This is about why we’re in the National Autistic Society’s majority.
The National Autistic Society are working towards a more autism-friendly high street. According to their research, 79% of autistic people feel socially isolated, as do 70% of their families. Sensory issues play a big part in the withdrawal of people with autism from an over-stimulating world – a world that becomes physically painful when you’re processing it in a way that neurotypical people find hard to understand.* But isolation comes too from the reaction of others when things go wrong. There’s no a person with autism or their family who can’t relate a catalogue of hideous/humiliating moments of public judgement, the result of which, life can go two ways: you can develop the hide of a rhino’s arse (and/or you cry a lot) or you stop going out.
*NAS is also trying to help increase this understanding and are holding a virtual reality tour around the UK this summer. I doubt it will be a pleasant experience, but really that’s the point.
* * *
Pizza Hut. 30/05/2015.
It wasn’t a massively-ambitious plan. (Or at least not a massively ambitious plan by neurotypical standards. The planning and preparation involved in taking SP as someone with autism somewhere new is something we’re still adjusting to.) Amy fancied a trip to Pizza Hut a) because she thought her beloved teaching assistant pulled a second job there and b) their milkshakes are to die for. We hadn’t eaten. I like pizza. It was mid-afternoon on a Saturday. We piled in the car and headed on our way.
At this point we didn’t know that SP was autistic – we were only at the beginning of a long journey towards a diagnosis – but we knew he was different to most children. He was more prone to a temper tantrum than any of my other kids and could turn on a dime.
And, to be honest, things started off ok. SP was perky and happy to be shown to our corner table. But one of his things at the time was the need to scout out a place, to trundle every inch before being satisfied with a location. Obviously, this is fine if you’re at a soft play area, but less ideal when there are people carrying hot food and drinks. Our order placed, I think the request to stay seated is what triggered the meltdown.
Tantrums are bad enough at home, but at least they’re confined to private walls where you know where’s safe and to familiar ears who understand. In public they become another beast altogether. I’d learnt enough to know though that giving him attention would only escalate things. Ignore him and he’d calm down as though nothing had happened. A couple of minutes and a win would be worth the short-term shrieking.
But then the waiter came over:
“Excuse me, but we’ve had a complaint about your son.”
I tried to explain that, yes, he was making a noise, but, if we ignored him it would stop soon enough, but if I tried to intervene it would only get worse. And it would make it worse for the next time too.
“Yes, I appreciate that, but still, it’s a complaint and it looks as though you’re not parenting.”
And thus, I had to chaperone SP from the dining area to the takeaway vestibule, leaving Amy and Eve in their seats. And because – no shit, Sherlock – moving him made the situation worse, we ended up sitting in the car, SP restrained in his car seat, whilst he calmed down (whilst I recovered from the humiliation too) leaving Amy and Eve in the restaurant supping milkshakes.
(I don’t know what we’d have done if Eve hadn’t been with us. Walked without paying, I guess – but also simultaneously destroying an afternoon for everyone.)
And he did calm down. Eventually. Although it took a lot longer than it would have done otherwise. In hindsight, it wasn’t a temper tantrum, it was a meltdown. They’re very different things. SP needed to know his environment and not being able to do that increased his anxiety to the point where he couldn’t cope. Moreover, trying to talk an autistic person out of a meltdown is a sure strategy to failure. They’re no longer in control – flooded by hormones, sights, sounds and sensations. Bending over them, talking to them, even if you’re trying to soothe, just adds to the cacophony, when what they need is space and time. Demonstrably parenting for the benefit of those in proximity to a meltdown is the very worst thing to do. But it’s what autism parents feel they should do to stop the tuts and stares, the comments and the requests to leave.
And I get it – I really do. It’s not pleasant to share an environment with a screaming, flailing child. I know because I live with the assaults day in, day out. If it’s irritating and unpleasant for a few minutes, I want to tell those who look with such disgust that we’ve intruded on their little world with our shrill, irritating one, imagine it as something you have to live with. Imagine having to be mindful of every possible trigger, ready to de-escalate before the storm breaks.
And imagine what it must be like to live with a red mist that can overwhelm you. Being unable to express rationally all that’s going on in your head and what needs to change to make it better! Imagine never being able to get away from that.
And imagine knowing that you’re unwelcomed by society for reaching that point.
Is it any wonder that we retreat into our private worlds where things are comfortable and people understand? Is it any wonder that the majority of us affected by autism feel socially isolated?
We went back and joined Eve and Amy for our food. I let SP case the joint, hoping to catch a sheepish glance from the complainant, envisaging having a temper tantrum of my own right up in their face. Yes, I’d have got barred, but I haven’t been to a Pizza Hut since, no matter how delicious their milkshakes.
On Instagram it looked as though we’d had a lovely time, but it affected my confidence in handling public situations and was the start of a reticence towards social situations. But I’m learning the triggers better and pack up resources to keep SP sated. We eat fast! We’ve found places where SP is happy to eat. And in those places we’re regular faces. People with autism like the familiar. Win them over and you’ve got a brand-loyal customer second-to-none. Make them feel uncomfortable and you won’t see them or their families for dust. The failing high street might do well to remember that.