selfdirect Safety Safety in numbers

Safety in numbers

Adam likes numbers. No, Adam loves numbers. He is passionate about numbers, cars, and car mileages. He collects them in a carefully formatted logbook. Everyone who drives to our house regularly knows the ritual: before they leave Adam notes their car mileage. Rather than hurriedly writing them down, he has taken to punching the numbers into his calculator then copying them into the logbook, meticulously, after the guest has left.

The calculator is attached to Adam or it would seem that way.

Of all Adam’s compulsions, I find this one fairly easy to live with (easy for me to say, I don’t drive) I do find it a bit of a pain when I am trying to catch up on girlish gossip over the ‘phone and he appears in the doorway demanding the car mileage of whoever I am speaking to.

I also find it a little tedious when I leave my PC unattended for over five seconds and return to find my screen saver is no longer a hilarious picture of me and the girls but has been replaced with a close-up photograph of the milometer from Grandad’s Citroën C5.

Years of learning about why people with Autism behave sometimes bizarrely have led to me having a far deeper empathy and therefore patience than I otherwise could imagine having. Many of the seemingly pointless and strange behaviors can be explained very simply.

They are safety mechanisms. These rituals that, to the rest of us, may appear unusual are keeping that person feeling safe. The world can be a daunting place at times for any of us and no doubt we all have our own little ways of keeping safe. The collecting of numbers and seeing car mileages increase, for Adam, makes the world a more predictable and safe place to be.

I admit that when he decides to shower at three in the morning “just in case he sleeps in” or when he constantly has to ask the same questions over and over again, my patience is not always as stretchy as it could be.

I have recently been helping with the development of a Common Resource Allocation System. There are sixty people altogether involved in this work; directors, managers, statisticians and citizen leaders (like me), getting together each month over the year, in London.

The Department of Health is developing a Common Resource Allocation System (RAS); a national document, which will be available for local authorities. The RAS will serve to assist authorities to decide how to divide their funding for people who receive support and decide how much money to pay people who chose to direct their own support.

At these meetings, I have, at times, felt unsure of the value of my opinion. I was told by another parent/carer, at the first meeting, that even a confused viewpoint is still a valid viewpoint. This made me feel better about attending the second session in London.

As the other Mum, Jan, and I entered the conference facility, she looked at me and said: “Anyway, Sarah, I know I’ll be ok in there.” She slid her suitcase to join the others near the coat stand.

“How come you’re so certain of yourself?” I asked dying for the answer that brings total confidence.

“I’ve got my big knickers on!”

“What’s THAT got to with anything?”

“If I feel safe in my pants then I feel safe as a person.” She declared proudly.

“Each to their own, I suppose” was all I could think of to say.

Afterward, when I thought about this conversation, I realized how true those words were.

A confused viewpoint is still a valid viewpoint and we all have our own ways of feeling safe.

For me, it’s comfy shoes, when traveling, so I know if I need to, I can run to the right train platform. For Jan it’s her big pants, for Adam its numbers; logical, predictable and safe.

Adam faces challenges greater than any I can possibly imagine and he faces these challenges from the second he wakes up in the morning to the second he falls asleep at night.

I accept that each day it is important to run through the calendar with Adam and go through every single event for the whole year, I accept that he needs to check the Auto Trader website to see which cars have the highest mileages. I accept the many hurdles we have to go through each time he needs new shoes or clothes, I accept that he constantly needs to turn electrical appliances off around the home (whether or not I am using them at the time). These are the little things he needs to do to help him feel safe.

An old friend of mine, who sadly died recently, once said to me “Sarah, your patience is deserving of a huge medal made from the finest chocolate.”

I also accept that these words are very true.

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