People generally don’t like uncertainty. Weather forecasts, hurricane warnings and geological models exist because of uncertainty. People eat at McDonalds. Horoscopes endure. Gamblers have a love-hate relationship with uncertainty. The insurance industry exists to lessen the financial penalties of uncertainty. Mathematical models are developed to try to take uncertainty into account. We all want to have some idea of what is going to happen. It is about control. I’m writing a post in my other blog about the mathematical and personal aspects of uncertainty.
One of the more obvious aspects of Autistic Spectrum Disorder is the need for order. Jonathan has always liked things to happen when they are supposed to happen, for as long as they are supposed to happen, and with plenty of warning. For a blind child, needing order serves some very important functions. Fortunately (and possibly this is no coincidence), we have had a fairly ordered and predictable lifestyle as a family. He would eat his breakfast at the same time everyday and have a bath on certain days. I think part of his love for television is that everything happens when it is supposed to, and for exactly the correct amount of time. Jonathan preferred secondary school, with set times for certain subjects, to the more freeflow approach of primary school where he never knew when this particular activity he was enduring would end, and another begin. Jonathan ate the same food every day for about eight years, and it really isn’t a lot different now. One of my great achievements in life was getting him to be able to eat at McDonalds without taking a lunchbox. (More on that in a later post)
The other day in church one of the speakers was going over time. Jonathan leaned over and asked me, “Doesn’t he have a watch?” There was a clock in plain view, but the speaker was oblivious. When Jonathan was asked to speak for seven minutes, he wrote and practised his talk so that it was seven minutes. We needed a musical piece about three minutes long. Jonathan produced an arrangement exactly three minutes long (instantaneously). When Jonathan is in the class, it does not go over time without comment. Jonathan knows exactly when things should happen, such as the days the rubbish bins go out, when Mark has meetings, and if the washing needs to be brought in. It used to be that if he didn’t hear the noise of dinner being made at 5pm he would come out and ask me, “Shouldn’t you be in the kitchen?”. I chose to see it as endearing, rather than annoying.
I’ve tried to imagine what life was like for Jonathan as a baby and young child. Everything happened suddenly for him. Because he was blind, he didn’t see people arriving and leaving, but rather they were “here” or “not here”. His life was a series of discrete events, rather than a continuous stream.There were no visual cues, such as seeing people collect up the swimming togs before heading out to the pool. For this reason we learned to tell him what was happening. Now he uses aural cues to the extent that he often has a better idea than we do of what is happening.
In all things balance is important and we have tried to balance making his (and our) lives comfortable by keeping things ordered, while at the same time pushing at the boundaries and helping him to cope with the unexpected. It is easier to encourage new things when there is a base of security from which to work. We learned to warn him ahead of time if things might be less structured. We learned that sometimes it just wouldn’t work – that a surprise activity would be met with such opposition that it was impossible to proceed. We put time limits on things so that he would know when a possible ordeal would be over. Jonathan trained us pretty well really.
So it is interesting that Jonathan likes to travel. We were fortunate to be able to visit New York and the Sesame Street studios in (I’ll just check my dates with Jonathan) October 2009, when Jonathan was twenty. You don’t get a lot more uncertainty than in a foreign country. But Jonathan was fine. I think he decided that the end justified the means. We didn’t push him too far, allowing him the odd day at home watching cable TV. He loved the US food, where you can have three side dishes without a single vegetable. He loved the subway instruction, “Stand clear of the closing doors please” at every stop. He didn’t even mind the long haul flight from Auckland to Los Angeles. It was night time so he slept. Then he ate breakfast, went to the toilet and we were in America. Would that I could do that!
I adore Jonathan. I love his love for order. He makes me laugh everyday. He is a quiet orderly presence in our home, keeping things ticking over in an timely fashion. I understand him now, and know how to help him cope with the unexpected. I know it used to be very challenging, but it is hard to recall the details. I think there is a rosy glow descending over my memories of his childhood, where spontaneity was close to impossible. But I think that’s the way it is supposed to be.