How my son Isaac’s autism plays out physically never used to weigh too heavily on me. Mainly because it was as a mental condition that I’d feel its full force.
It’s not that there haven’t been noticeable physical manifestations. There absolutely have – from simple coordination issues, to how he holds objects for everyday tasks, to sport and more. It’s just that the more domineering psychological and social effects have tended to force physicality onto the periphery. The toil demanded to study the workings of Isaac’s wildly complicated mind took precedence.
Sensory processing difficulties similarly perched on the sidelines; grouped in one amorphous, mysterious whole. His senses, we’ve always known, are skew whiff, so navigating him through sights, smells and spaces has been tough – but there’s been little in the way of genuine understanding and treatment.
Our unreconstructed knowledge of Isaac means always front of mind is: obtaining order in a chaotic world, heightened senses, stimulation seeking, and discomfort distinguishing noise and sound, food phobias and maddeningly narrow diet. However, true tangibility has been difficult to track somehow.
With occupational therapy elevated to one of his main sources of treatment, some discomforting truths have only recently started to emerge. The primary goal of occupational therapy is to enable people to participate in the activities of everyday life. It encompasses the whole gamut of physical skills. Balance, touch, vision, coordination, strength. Programming in people with disabilities what is so instinctive in people without.
Because such has been the inscrutability of Isaac’s physical and sensory symptoms, it’s taken a year of intense occupational therapy to really interrogate them. Yet the diligent, drawn out approach didn’t stop the shock and degree of sadness I felt from what the Occupational Therapist sensitively told us at the conclusion of his assessments.
Which is that Isaac effectively has a diagnosis of dyspraxia. A developmental disorder of the brain (in childhood) that causes difficulty in activities requiring coordination and movement. Profoundly physical symptoms then.
Saying his autism, in my mind at least, has parlayed into a more complex mental and physical condition is purposefully dramatic. The physical and sensory struggles Isaac has have a tangibility now. I can’t help but feel the unlevel playing field he’s on anyway has got that bit more wonky.
Fortunately this new discovery of dyspraxia, this new label to process and live with, comes with a confidence that it’s awash with the sea of knowledge we need to get by and get on. It all slots in to his autism too.
The facts are fierce though, focussing as they do around sensory over-responsiveness, weak balance, lack of body awareness, visual and auditory struggles.
Highlighting all these physical and sensory problems is instructive. However, viewing them in isolation is a misleading and miserable process. What has actually happened with the detailed, expert reporting of dyspraxia is a crystallisation of my confusion with sensory processing difficulties and nagging physical concerns into a more complete, coherent understanding of his autism. Into an interlinked mental, physical and sensory condition.
A microcosm of this is the poor body awareness he has of himself and others. It means he requires much tactile input to feel sensory information and process it. He seeks to hug people and squeeze them as a way of understanding his body in relation to someone else’s. He can’t just be naturally spatially aware. It’s like he needs to lay physical markers.
But the social reward he’s had from family cannot be transferred to teachers. One step forward, one back. How complicated, how cruel.
My thoughtless ‘don’t squeeze’ dismissals, and blanket talk of not being overly physical shame me. He can’t just switch of this innate, life surviving mechanism he has. Intense therapy, squeezing implements, exercises, all one on one, over months and years are needed. As are social stories and aids to help read emotions.
Visual perception and visual motor skills are equally major challenges for him. Copying simple physical actions (in PE for example) – something so instinctive to typical people – is fraught for him.
The impacts on everyday tasks are huge. Picking up cutlery on a laid, full table and eating a meal is terrifically tortuous for him such are the fine spatial and visual skills needed. He sees everything, all seemingly separate unconnected objects; this photographic memory is a handicap as well as something incredible.
The school year ahead will have a heavy focus on the physical and sensory. It will be exercising my mind like never before, knowing we need to adapt a lot to support him properly. Sensory integration and action skills that are so critical to life and come so laboriously unnaturally to him. Life skills – dressing, eating, basic participation in activities. These will be painstakingly practiced by him. There will be frustration and anger. Impatience will trump patience most of the time.