The House of Autism

I was going to write a sign, print it out, get it laminated and stick it to the front door. It was going to say “Welcome to the House of Autism. If we’re all fully dressed and eating with cutlery”… and then I realised I couldn’t finished the sentence because this has NEVER HAPPENED.

Someone once called my children ‘feral’, and in some ways they might have been right. They sometimes do look that way. All of them, and also The Husband, prefer not to wear shoes or socks. Bare feet are best, although socks are more bearable than shoes. Shoes without socks can be an allowable compromise. The younger two sons often get too hot and take their tops off. They prefer not to wear coats unless it’s freezing cold out, and often not even then.

They rarely eat with cutlery unless they need to actually cut something up, or it’s very messy food, in which case they will grudgingly and rather clumsily use a spoon. Middle son eats non-food items – plastic, cardboard and metal, mostly. Youngest did that a few times, until he ended up in hospital with a pound coin lodged in his oesophagus. It didn’t just go through and come out the other end (what usually happens if it’s a marble or a penny, apparently). He had to have a procedure under a general anaesthetic to extract it, and a two night stay in hospital.

They make dens – endlessly, creatively, sometimes inappropriately (that is, outside of our home and using materials that belong to other people). They like to squeeze into small places, hide behind doors and in cardboard boxes. They barricade themselves into rooms and areas and disappear into the world of tablet or phone or computer. The younger two much prefer to sleep in sleeping bags than under a duvet.

They play outside, sometimes in the same places as other children, and sometimes they even look as if they’re making friends, but if someone gets into their space, they lash out. They have occasional violent tantrums for what look like trivial reasons, destroying bits of the house and sometimes self-harming too. All of the children have been sent to the school Heads on several occasions.

I worried about all of this for a long time.

I still worry about it.

But now, I have answers. We’re not bad parents. We’re not just failing to cope where others manage apparently effortlessly – or at least with far less stress than we can manage.

The boys don’t eat with cutlery if they can help it because they have problems with fine motor control, commonly associated with autism. It’s the same reason that all of them have dreadful handwriting. Holding pens or forks can actually hurt their fingers, because they only have the modes of grab hold very tightly, or hold so loosely they drop stuff.

They all show signs of sensory processing disorder. That’s why they don’t like wearing shoes, which reduce the feedback they get from their feet – they lack awareness of the positions of their bodies in space, and wearing shoes exacerbates that. They are extra sensitive to how their clothes feel (labels, buttons, zips, scratchy bits, just don’t like the way it feels for no reason they can articulate). They’re not good at either regulating their own temperatures, or identifying whether they’re too hot or too cold, so they will suddenly realise they’re too hot and shed clothes, or become miserable and not realise they’re too cold until we draw to their attention that it’s snowing and they’re in a t-shirt. They will resist wearing coats or fleeces, and if we do manage to get them to put them on, they’ll take them off the second they’re not freezing cold, meaning we leave a trail of coats, jackets and jumpers wherever we go. On the other hand, if they find a fleece or scarf they like the feel of (usually mine), they’ll cuddle up in them, even in the middle of summer.

SPD is also the reason the boys put non-food items in their mouths, and yet are difficult to feed. They run more on texture and mouth-feel than on taste, and if they are not in the mood for a particular food, they’ll go hungry rather than eat it. I read somewhere that for people with SPD, it can be like swallowing razor blades for them to eat food that’s unpleasant to them. They can tell the difference between Bird’s Eye and Sainsburys Own chicken nuggets, and whether the recipe for a particular food item has changed.

They make dens and sleep  in sleeping bags because that reduces the amount of sensory imput imposing on them, relaxes them and generally calms them. The tablet and phone, often with headphones, calms them for the same reason – the ‘real’ world is overwhelming, unpredictable and exhausting, and they need to reduce their interaction with it.

When that reduction is not possible, meltdowns happen – they’re the episodes that look like tantrums. The approach to reducing meltdowns is to catch the signs early on and teach the children to remove themselves from the stressful situations, from the overstimulation, as best they can. It’s a work in progress.

(As I’m writing this, I’m hearing bangs and crashes from upstairs. I shout ‘Is someone having a meltdown?’ and the reply is ‘No, we’re building a bookcase’. It’s genuinely impossible to tell.)

Between the five of us we have one formal diagnosis, one fast approaching, and three who are unlikely to ever get formal diagnoses (we (allegedly) cope too well) but are very definitely not neurotypical. We also have three cats, one with a pacemaker, one with no teeth who still manages to catch and kill birds very effectively, and one ex-stray who brings us home rats now and again.

Chaos and meltdowns abound, clothes litter every surface, as do books and technology. There’s a potential den in every corner, and real dens in about 25% of them. There are Heath Robinson-style creations everywhere – not so much with sellotape and string as with insulation tape and bits of hacked Ikea. Who said autistic people have no imagination?

Welcome to the House of Autism.

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