Like a lot of young people with complex developmental conditions, Smiler has a diagnosis of Sensory Integration Disorder, also commonly referred to as Sensory Processing Disorder (SPD), Sensory Integration Dysfunction (SID), and a bunch of other variations on the theme.
Very very basically (because I'm not sure I understand the neuroscience angle all that well) this relates to the difficulty some people have in organising and interpreting the messages their brain is receiving from their senses, and determining an appropriate response. It's not a conscious process but more of an instinctive reaction, and affects everyone differently. This American website explains it as being like a traffic jam, where sensations are prevented from getting to the right bit of the brain at the right time, so leading to an uncoordinated reaction which can result in all kinds of difficulties such as clumsiness, terrible handwriting, over sensitivity to texture, or difficulty chewing and swallowing.
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A parents perspectiveSmiler's SID manifests in lots of different ways - he becomes really distressed at sudden noises for example. They don't even have to be loud - an unexpected sound, or even a familiar sound out of context - it's as though it causes him physical pain, and his reaction can be pretty extreme, often lashing out at those around him or self harming.
Smiler can often be overwhelmed in busy environments - high levels of multi sensory input (audiatory/sound, olfactory/smells, visual/sight, and tactile/touch) prevent him from being able to tune out what is going on around him and concentrate on his own thoughts. Known by many within the special needs arena as over stimulation, this state of heightened anxiety and inability to focus often leads to a meltdown - a loss of control, usually ending with a hot and angry and confused young person. To 'outsiders' it can look like a typical toddler type temper tantrum, and as Smiler is almost 14 this garners a fair few raised eyebrows and even the odd 'helpful' suggestion from members of the public.
Smiler used to self harm every day - he'd bang his head against the floor, pull his hair out in handfuls, and bite his hands and forearms so hard that he often drew blood. He'd twiddle his fingers around and around in his hair, cutting off his circulation and then be unable to untangle himself, his fingers all swollen and purple. Because of his development we couldn't be sure if he was not connecting his actions to the pain he was experiencing as a result, or if he wasn't actually feeling the sensation of pain. As time went by we realised that while some of his behaviour was a result of his frustration (often at being unable to communicate with us), sometimes it was a reaction to the sensory input he was experiencing, or he was fulfilling a need for intense stimulation.
As a young child Smiler experienced extreme tactile sensitivity - he could hold a solid hard toy such as a block in his hand, but hated even touching anything soft like a cuddly toy. Clothes were a nightmare - we had to cut out tags as they would irritate him and he couldn't stop crying, and for a while we put all his clothes on inside out because the sensation of the seams against his skin was intolerable to him. Messy play and activities such as finger painting were impossible as he would scream as soon as his hands were wet with paint, but loved water - the inconsistency was hugely frustrating.
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Mouthing and biting
As soon as he had the coordination to bring his hands to his face, Smiler mouthed everything, using his lips and tongue to explore anything he could hold, or bring his mouth to. Unfortunately this wasn't restricted to checking out if something was edible or not - if he could physically fit it in his mouth and swallow it then then it was fair game (cat poo snack anyone?). If he was laid on the floor then he'd lick it, unless it was soft, like grass, or bitty, like sand. It didn't make any difference to him if the surface was the clean(ish) lino in the kitchen or the floor of the bus that was the only place I could put him as I folded up his wheelchair. If he was sat in front of a giraffe enclosure and could reach the railings then he'd lick them. If one of the cats sat within reach of him on the floor then it too was checked out with his tongue. (I know. Ugh.)
I'm not sure when we recognised that this constant mouthing had developed into what seemed to be a need for him to bite down hard on things. He usually targeted his hands and forearms, and developed hard calluses on the top and bottoms of his fingers where he bit them repeatedly. He didn't just bite and release, he was like a hamster on a cartoon who'd sink his teeth into your finger with absolutely no intention of letting go, even as you shook your hand in panic, flicking this little furry creature from side to side, slamming it against the wall or a table...
Google being handy for this type of research, I found that this was a really common feature of SID, the need for deep jaw pressure - somehow it provides comfort - a way of self soothing. Smiler had discovered this coping mechanism instinctively, but his methods weren't healthy - biting into his flesh was destined to end in disaster, and I had personal knowledge of a teenager who had lost two fingers to infections because of his biting habit, combined with the (very common) related issue of those around him being unable to treat the wounds effectively as dressings or creams would not be tolerated, and because it was a self soothing mechanism for him, their continued attempts to clean the wounds simply resulted in increased biting and exposure to all the bacteria of the mouth.
Having already gone on a lot longer than I meant to I'll explain some of the strategies that helped another time, but I want to change tack slightly now to talk about diagnosis.
From an academic perspective I resisted Smiler being officially diagnosed with SID for several years, believing that there is a tendency to over pathologise such activities by diagnosing a disorder when actually the behaviour might be temporary or simply a normal reaction to a situation we're unaware of. After all, we think nothing of adults who grind their teeth when they're stressed, and others who have developed habits such as gnawing on their nails, or chewing the inside of their cheek, or biting their bottom lip when they're nervous. I hate walking on sand - it makes me feel physically sick, but I've always considered it to be just one of those things, not a red warning flag of an issue with my sensory processing system! How to balance professionals who seemed to want to add yet another disorder to Smilers (already considerable) list with wanting to access help for him was something I struggled with - still struggle with in fact. SID is now on that list of his, purely because it is helpful, on occasion, to be able to point to a definitive medical diagnosis as to why (for example) we need to be able to wait in a quiet corridor rather than a bustling waiting room for a clinic appointment.
Although we try not to completely avoid anything purely because of Smiler's SID we don't see the point of stressing him out just for the sake of it, so we tend to pick our battles. Trying to protect him from anything and everything that might cause him distress would mean we were missing the opportunity to support him to manage that reaction, as well as potentially preventing him from having really enjoyable experiences. Rollercoasters, for example, were something that we felt he might absolutely detest, but we opted to try one, just once, and he loved it, begging to go around again before he'd even got off. Over time we've gradually found ways of helping him manage his responses to certain things, and learnt to anticipate activities and situations that he will struggle to handle, but that is a post for another day.
Does any of this ring bells for you, or do you know it all backwards? I'd love to hear about the kinds of things your kids (or you, or your partner!) do, and anything you've learnt about ways to manage.
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