Caught off guard

One of the hardest things to convey about autism is just what makes it so distressing. To outsiders, exposed to small doses, it might seem like a relatively mild condition: the child doesn't suffer from any physical impairment or mental retardation, so surely it can't be all that bad? A lot of the time it seems as if the child is simply a bit awkward: stubborn, set in their ways, reluctant to communicate, but basically functioning well. In fact, when their routines are well established, it's easy for the parents themselves to fall into this way of thinking and start to let their guard drop.

We learned a lesson in this regard a few weeks ago while staying with Magteld's parents in a small village in Holland. On the day before we left Magteld went to the supermarket with Euan's younger brother Adam, leaving Euan with me in the house. He seemed to be playing happily by himself with the CD player, in his usual fashion, so I went outside to make a phone call. When I went back into the house a few minutes later the music was still playing, but Euan was nowhere to be seen.

I took my father-in-law's bicycle and cycled round the village in a frenzy, eventually finding Euan in the supermarket, standing in his socks and clinging anxiously to his mother's leg. He had seen Magteld walk past the front window with Adam in the buggy, panicked and ran out after her. One of the villagers found him in the car park, visibly distressed and crying out "mama", and taken him into the shop.

It's always upsetting - and, of course embarrassing - to lose a child in public, but this episode brings out some of the differences between autistic and "ordinary" (some use the term neurotypical) children. Euan was left disoriented and distraught by a minor change to his routine: Magteld left the house without saying goodbye. Instead of finding me in the garden, he blindly followed his mother down the street in his socks, crossing two busy roads on his way to the shop (he knew the way from previous trips with his grandparents). And at the age of five, he used baby language to communicate the fact that he had lost his mother.

And this highlights one of the most distressing things about autism: the way seemingly minor deviations from the norm can leave the child suddenly helpless and vulnerable. Euan seemed settled in his grandparents' house, yet he was disoriented by a tiny alteration to his routine and was barely able to communicate his distress to other people when he got into difficulty. Thankfully he was in a small village where the traffic was light and a kind-hearted stranger took him to his mother, and the panic was soon quelled. Yet it brought home how much autistic children are attached to the "comfort zone" of home and routine, and how quickly things can unravel when they are removed from it.