The third generation

"Grandparents are the worst," a therapist told Magteld last week. According to this view, grandparents have an even harder time than parents in coming to terms with autism in the family. They deny the condition, struggle to understand it and quibble endlessly over its causes. I am aware of one heavily active campaigner who clings tenaciously to the almost wholly discredited theory linking MMR to autism and posts messages to medical websites declaring as his area of expertise: "grandfather of an autistic boy" (a courageous stand, but perhaps a foolhardy one given that most other contributors can boast a string of letters after their names). I can see a lot of truth in this statement, but ultimately I think it disparages the vital work grandparents can play in bringing up autistic children.

In some ways autism must be even harder to accept and understand at a step's remove. Both our parents live at a distance - mine in Norfolk, 400 miles away, while Magteld's are even further away across the sea in Holland. They see the children perhaps half a dozen times a year. Euan is unable to speak to them on the phone. So their understanding of his development is bound to be fragmented.

Now consider that for most of their lifetimes, autism has been a marginal condition which was diagnosed only rarely. It has only recently become the prevailing view that it is a genetic condition (later in this blog I want to address the whole issue of the causes of autism, but it's enough for now to note that during our parents' youth, when psychoanalysis was the dominant theory, it was commonly believed that autism was the result of a lack of maternal affection, something that must have deeply scarred a generation of women). Nowadays when a child shows signs of autism, the first place the parents look for clues about its origin is back up the family tree - in my case, towards an uncle who has been retreating into himself for the last 30 years and whose sense of isolation has gradually engulfed him like ivy spreading over a withered tree.

So the grandparents have to contend with the idea, firstly, that their grandchild is not the kind of laughing, bounding, affectionate small person they sentimentally remember from their own days as parents (and didn't we, as children, always look so excited when we went to visit grandma and granddad?), and secondly, that it might somehow be their own fault. It's no wonder they find the whole concept hard to swallow. Older people are often fearful of change, but they balance it with another quality that is often overlooked: resilience. They may struggle to understand Euan's condition, but the patience and energy they invest into trying to engage with him has been awe-inspiring at times. They have persevered in situations that bring Magteld and I to the brink of despair. It's a less scientific, more intuitive kind of understanding, perhaps, but it's one that can break down boundaries.

The sibling factor

Euan has a younger brother, Adam, who is nearing his third birthday - roughly the age that Euan's difficulties started to become apparent. So far there has been nothing remarkable about Adam's development: he talks like any other two-and-a-half-year-old, probing the mechanics of language as if it's a shiny new gadget and beaming with glee when he produces a fluent sentence. He looks people in the eye when they talk to him and displays no obsessiveness in his play or his behaviour. Yet autism is an issue for Adam too, and will increasingly be so as he and Euan grow up together.

The gap in the brothers' ages - two years and four months - is commonly seen as ideal. Certainly at the moment they get along famously, whether rolling around on the living-room floor, singing songs together or scrambling over the climbing frame. At the moment Adam is utterly unaware that Euan is different from other children; in fact, Euan's restricted communication mean that in many ways they operate on the same level. Some time after Christmas we noticed Adam was pulling ahead in his language and using more natural forms of speech: whereas Euan repeats things he has been told mechanically, Adam is able to adapt what he hears and employ it to form his own sentences. Imagine giving two children the same Lego set: one of them constructs and dismantles the design on the box again and again, while the other shakes the bricks onto the floor and uses them to create his own things. That's more or less the difference in Euan and Adam's language.

Because he is unaware of Euan's condition, Adam sometimes copies his older brother's autistic habits. When Euan goes downstairs in the morning and wants to play in the living room, he bangs on the door until one of us comes down and opens it; the other morning Adam did the same thing, believing, perhaps, that because we don't tell Euan off about it, it must be the right way to ask. Yet the bigger worry is what happens when Adam does start to notice that Euan is different from other children. Will he shun his brother in the school playground, or protect him? When he reaches his teenage years, will he resent his brother for being different, or feel constricted by the association? Will we, as parents, lean on him too much to look out for Euan - who is, after all, the older brother?

And which will be the greater danger: neglecting Adam in the struggle to attend to Euan's needs, or overloading him with expectation as the "normal" child? At the supermarket this weekend Adam delighted in his new-found ability to "surf" on the side of the trolley as I pushed it along. "I'm finally finding out how a two-year-old is supposed to behave," said Magteld with a wry smile, reminding me that "normal" children provide plenty of challenges too.

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.