I’ve been starting to get really sick of medical appointments. We seem to measure our lives not by months, seasons or the school terms, but by the distances between visits to hospital or the GP or other health care professionals. Not that I’m knocking the services provided- I think the NHS is one of greatest strengths of our nation (are you listening Mr Cameron?), it’s just that my endurance and resolve has been wavering of late. It’s come as a surprise to me then, that I’m so looking forward to our next one.
We have been to so many different appointments, seen our son prodded and poked, examined and explored by so many different health care professionals, that we were rather blasé about yet another appointment. This time it’s the turn of occupational therapy to intervene (the appointment is in two weeks time). I forget now who made the referral but I remember thinking, ‘Why not? He’s seen every other type of health care professional’. My feeling was that it would be like the hearing test, or the incontinence clinic or a number of other services my son has been to see. These appointments came to nothing and, whilst I’m glad such services are in place, felt like ticked boxes on a list rather than anything helpful or productive.
This is not just about my own feelings. The school I work in, whilst massively supportive, is showing signs of tiring of how much time I have off for appointments. Requests that were once answered with, ‘You work hard and put so much in- of course you can have the morning off’ have become, ‘We’ll see if we can cover you’. Perhaps I’m just paranoid, but I sense that I’m running out of times I can have off. How long before they start to think I’m taking the piss? I made a decision to scale back the amount of meetings and appointments I go to. I’ve had a year of attending every single appointment for my son and don’t dare add up the time I’ve missed from work (though I’ve no doubt they could tell me). I’d like to be there for everything, but both parents attending is unsustainable.
As a result, I did not expect I would be going to the occupational therapy appointment. To be honest, I did not have much interest and was not even sure I understood what it was. As far as I was aware, it’s about physical development, dexterity, fine motor skills et al. B is clumsy, holds cutlery like it’s the first time he’s seen it and has a slightly awkward gait but in my mind it has never added up to a physical problem that needs intervention. If anything, the invisibility of autism stems from an absence of physical indicators. To look at my boy, you would not be able to identify a disability. You night wonder why he plays alone in the playground though.
Now though, my eyes have been opened to occupational therapy. Or rather, my wife’s eyes have been opened and I have experienced a vicarious enlightenment. You see, she attended an autism conference, part of which involved a lecture from two occupational therapists. She came home from the conference excitedly waving the handouts and asking, ‘Why have we never been told this before? Why don’t we know this?’ A few nights later she sat me down and went through the notes. Cynically I listened, ready to be baffled by science (not hard) and nod in the right places, pretending I understood. Quickly though, I realised this whole OT malarkey may be onto something.
The first thing that grabbed my attention was the fact that there are seven senses. Seven! Shit, I’ve been telling the kids in my class there were five for years! But no, apparently you can add to your list of sight, sound, smell,touch and taste two more- vestibular and proprioception. Vestibular is to do with balance, whilst proprioception is awareness of your body in space. Did anyone else know this? Should I have been paying more attention in Science at school?
What’s important about these senses is that they work together by a process called sensory integration to help us ‘make sense’ of the world. When they don’t work well together, we may see difficulties with attention, learning, understanding the intentions of others, under or over reacting to situations and unusually high or low levels of activity. Is this starting to sound familiar yet? Unsurprisingly, this sensory processing disorder is found in at least 70% of the ASD population. The practical implications of all this are either low thresholds or high thresholds in arousal levels. Forgive me if this is starting to sound like a very boring science lesson, but for us it was a real eye opener, particularly as the OT lecturers went on to describe our child with an uncanny accuracy.
B, it would appear, has high thresholds. The notes my wife brought home identify the following as the main characteristics:
- May crave touch, eg.g rubbing, bumping, banging, fidgeting.
- Mat not react to pain or temperature
- Seek out messy play experiences
- Mouthing objects including non-food items
- Poor body awareness
- Fine motor difficulties
- Child makes a lot of noise themselves, e.g. humming, singing, banging
- May be clumsy
- Does not become dizzy
- Loves fast and moving equipment
- May have decreased sense of danger
- Poor attention
- Gets close up to the TV
- Craves sensation of deep pressure against body (firm hugs)
- Heavy handed and footed
- Difficulty learning new movements
This is a shockingly accurate description of my child, and other people I know on the autistic spectrum. It’s even more of an eye opener when you look at the ‘low thresholds’ and their implications. I won’t go into them in detail here (email me if you’d like me to share more) but a dislike of textures, crowds, noise, tastes are amongst the characteristics. That pretty much covers everyone I’ve ever met on the spectrum.
Okay, occupational therapists, you have my attention. This is such powerful information to have and has genuinely helped us understand. It has been a real light bulb moment for my wife. She feels better equipped to deal with school, with our latest DLA form and with the forthcoming medical appointment. It’s not a cure for autism, it’s not the answer to our prayers, it’s not even going to have an immediate impact on B’s life. But it gives us the power of knowledge. We can go into meetings (with our usual list of points) feeling informed, which we love.
And what do you know, the appointment is during the Easter break, so I don’t even have to worry about asking for time off work. It’s a good job, because there’s no way I’d want to miss this one!