Monday, 30 June 2008

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.

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