(other stories about my son can be found starting with Growing up with Autism
Try to imagine this: you are twenty-four years old. You have three friends who have given every indication that they enjoy your company. You see them every week; you go swimming, take hikes, prepare dinner together, sometimes you go shopping with them or just hang out. They seem unfazed by your bad temper and usually let you have things your own way.
One day you are told that your friends are having a meeting with your parents. You are asked if you have anything to contribute to this meeting. You arrive when the meeting is in progress, to find that the people you have considered your friends are in reality discussing your behaviour and setting up the schedules when each of them will come to see you.
A dystopian nightmare? No, just an unfortunate case of mixed signals. My twenty-four year old son has severe Autism. We have three or four Befrienders who visit him during the week, to help him learn to keep house for himself, and to engage with him in any activities in which he is willing to participate. Every month my wife and I have a what we call a 'team meeting' with them to compare notes, share experiences, and plan strategies for the future. We are both aware that at some point in the future we will no longer be able to care for him and so part of the plan is to accustom him to other people being part of his life. On this particular occasion, one of the Befrienders had the inspiration that it would be a good idea to include my son in the meeting. Unfortunately he arrived in the middle of a discussion of how to change his sleeping patterns . It went something like this:
Me: Oh look who's here. Hello, son.
Son: (smiling uncertainly because he seldom ventures into our part of the house) Hello.
Befriender #1 : (brightly) What do you think, would it be a good idea for you to get up earlier?
S: (immediately defensive) I like to sleep.
B. #2: Hey, mate , sorry we didn't have time to go swimming today, maybe next week, huh?
S: (giving him a look like Caesar being stabbed by Brutus) I'm not going swimming with you.
M: (interceding) Would you like some tea, Son?
S: I don't want tea/I want some tea.
M: (goes to pick up the pot which is too hot to hold) Ouch! Son, would you get me a pot holder?
S: (gets up then realizes this is not his kitchen and he doesn't know where the pot holders are.)
B#3: Over by the stove, see?
Wife: It's the red one, Son
S: (rapidly coming to a boil but holding on grimly, hands me the pot holder) Here.
W: (trying to head off the explosion) Would you like to go down to the swing with Dad?
S: (one leg is vibrating up and down and his fingers shake as he carefully spoons sugar into his tea) Later.
M: (as W. above) Would you like a biscuit?
S: I don't want a biscuit/I want a biscuit.
M: We can go anytime you want.
S: (finding it difficult to chew with his teeth bared) Let's go now.
So we went out. The swing is a giant version I built for him down by the river behind our house. The supporting timbers are fourteen feet high and the ropes would do to moor an ocean liner. It's a beautiful spot, shaded by tall trees and screened from the field and the house. I jokingly took one of the ropes and my son immediately grabbed it away. Sensing he needed a contest I didn't let go, and for a few minutes there was a really violent tug of war where I bared my teeth to imitate him and we growled at each other at the top of our lungs, jerking the rope back and forth. Did I mention my son is a strapping six feet tall? This is as close as he ever gets to a physical confrontation, for which both my wife and I are eternally grateful. Other parents of Autistic children aren't so lucky. You shudder? Can you even imagine what it is like for him day after day dealing with the kind of frustration he experiences ? He was hurt and angry and I let it ride until he calmed down and got on the swing.
M: (jokingly) Here, I'll push you.
S: Don't push me! (long pause) You can push me.
M: (very surprised- he never allows this) Ok, here we go. ' Once I was happy and now I'm forlorn...' (this is a song that I used to sing to him when he was five)
We got through the whole thing, and then I stood away and he continued pumping away, eventually nearing a perfect horizontal on both sides. I waited, watching the ropes for signs of wear and finally he slowed and dragged a foot to stop the swing.
M: What would you like to do now?
S: Look at the water.
The river is shallow here, and runs over a bed of medium sized rounded stones with that quiet chuckling sound rivers make . We stood together for a long time watching the patterns of light on the ripples. After a while I wandered away to look at some hogweed that was going to need cutting soon, until my son joined me.
S: Let's go now.
So we did. I slept badly that night and about four in the morning I got up and knew I had to write this. Thanks to all of you on E2 for being there to listen.