Wednesday, 30 July 2008
Two linked questions preoccupied me: where did this grief come from? And, more pointedly, what right did we as parents have to grieve for a child who was alive, healthy and contented?
I found the basis for an answer to the first in Jim Sinclair's essay, Don't Mourn for Us. Sinclair is an autistic man who was unable to speak before the age of 12, yet now travels the world speaking at seminars on the condition. "Autism is not death," he wrote. "Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child... It isn't about autism, it's about shattered expectations."
Sinclair is right, but his essay is far from being a straightforward admonition of parents who grieve for their autistic children. His remarkable insight into the thought processes of parents, if nothing else, nails the lie that says autistic people are incapable of empathy. Calmly, dispassionately and precisely, Sinclair dissects the impulse to grieve and, importantly, identifies it as a normal and necessary stage in coping with autism in the family.
I freely admit to belonging to that class of people who don't share many of the values of Norman Tebbitt. It's almost an article of faith for me to assume that material aspirations are the product of a limited intellectual capacity. And yet what we grieve for when grieving for an autistic child is, as Sinclair says, not the child we have, but the child we aspired to have - the school reports, the exam certificates, the university degrees, the girlfriends and grandchildren they would bring home, all of it suddenly plunged into darkness and uncertainty by the spectre of autism.
Sinclair makes no secret of the fact that this grief, when allowed to fester, can be insulting and damaging for the child. But he also, I think, recognises that grief is fundamentally a healing process, the first stage on the difficult road to reconciliation. His anger is directed not at parents who grieve, accept their loss and learn to deal with the child they have, but at those whose grief runs to despair, who see themselves as victims and seek to apportion blame, who fail to realise that autism is not death, but a way of life.
Euan has never told me what his favourite food is or asked why the sky is blue. That is really what I grieve for when I grieve over autism. But at the same time, I have started to understand that grief is not despair. And autism is not death.
Read Jim Sinclair's essay Don't Mourn For Us here
Friday, 18 July 2008
The doctors did an immaculate job. They guided us calmly and clinically through the intensive three-day assessment that Euan had undergone, which had led, after much discussion, to the conclusion that Euan is classically autistic with some learning difficulties. We heard how Euan had struggled to understand complex instructions; how he had preferred simple toys to more complicated one; how he had been almost oblivious to the presence of other children. How he had focussed on a narrow range of interests, mostly to do with numbers, to the total exclusion of anything else that might be going on. All of these were things we had observed with our own eyes on countless occasions, yet to hear it from a dispassionate trained observer was somehow far more unsettling.
It was the mention of learning difficulties that knocked me sideways. It's a phrase that has you fearing the worst: will my child ever be able to look after himself? Galling to think that a generation or two ago, this discussion might have ended with a recommendation to commit Euan to an institution, where his life would effectively have ended. Thankfully these days the emphasis has shifted. So Euan will enter mainstream school in August and stay there for a few months, after which a further assessment will be made. He may end up being taken out of primary school into a more specialist environment, but even this is no longer the dead end it might once have been.
At the end of the session I asked a question I had to wrench from the back of my throat: how severe is his autism? I had to ask, because while the discussion had been strong on detail and suggestions for how he could be helped, it lacked a focal point. "He's quite severe" was the short answer - severe in his learning disabilities and his social interaction, though his behaviour was less of a cause for concern.
It was hard to know what to think after the diagnosis was given: it was broadly what we expected, yet still felt like a punch to the stomach. For several hours we were barely able to look at each other. Magteld took Adam out, Euan watched Toy Story 2 for the umpteenth time, and I sat on the stairs and cried. Once Magteld came back I went for a six-mile run. Only then did I feel ready to face up to the daunting new future that we had been prescribed.
Sunday, 13 July 2008
It has taken the best part of 18 months to reach this point, since the day last winter that the nursery suggested calling in the educational psychologist. We took their advice, booked in a session and waited. The first seeds of anxiety were planted in our minds: nobody was saying the word autism at this point, but I had my suspicions. The few people I raised the issue with seemed almost at pains to scoff at the suggestion: "He's not autistic, he's just a happy child," they would splutter. And in many ways that's exactly what Euan was: a happy child who would sit and sing or play by himself for hours on end. The problem was, he was happy in a hermetically sealed world that nobody else was invited into. And the more Magteld and I tried to draw him out of it, the more he resisted, withdrew and flew into rages.
A diagnosis is a significant event for all kinds of reasons. It's the end of one road, as well as the start of a new one. It should, finally, give us some concrete answers from a team of trained specialists, rather than the cautious, circumspect suggestions we've had so far (that's not meant, incidentally, as a cricitism of the therapists who have seen him so far; indeed, it's to their enormous credit that nobody has tried to jump the gun and declare unilaterally that he is 'definitely' autistic, even though that's the answer we've been craving at times). It will open doors to support services, social workers and disability allowances that suit his needs. And it will put to bed, once and for all, those nagging doubts that still flap around our heads, that perhaps he's not autistic at all and we've just made some appalling misjudgement in our approach to parenting.
So given the potential for relief, why the sense of dread? Perhaps because a final answer is just that: final. The last hopes that he will one day wake up a "normal" child will be extinguished. Being confronted with the knowledge that this is it: that the next 15 years of our lives, at least, will be dominated by the challenge of teaching someone to function in ways that are uncomfortable, and at times utterly alien, to them, is a daunting prospect.
Tuesday, 8 July 2008
In the supermarket the other day I found my way blocked by a woman pushing her elderly mother in a wheelchair. The old woman was looking at the floor and muttering to herself, barely aware of the world around her. The daughter was straining to engage her in choosing what type of dessert to buy from the yoghurt section. Eventually, after several attempts, she interpreted a downcast grunt as signifying a desire for strawberry flavour. As I tried to make a discreet lunge for the creme fraiche, she looked up at me with drawn, bloodshot eyes and meekly apologised.
A few months ago I might have hastily grabbed the tub of creme fraiche and bustled along the aisle asking myself a dozen questions about why she bothered to take her mother shopping, because clearly the doddering old fool barely knew what time it was, never mind what type of yoghurt she'd like. But now I connected with her, at least fleetingly, as someone looking after a disabled relative, determined to maintain as normal a life as possible even when it seems to rub against logic. Besides, it's much harder to be scathing about other people's disruptive habits when you've seen scornful cast looks at your own child because he insists on touching every can of beans in the aisle, or stops to line up the paracetamol boxes at the chemist's counter.
Here's one of the unforeseen side-effects of having an autistic child: it's made me a more tolerant person. The more I learn to cope with Euan's behaviour, the more I appreciate how many other people out there are managing to get by in spite of neurological conditions, traumatic backgrounds, bouts of mental illness or physical disabilities. And it's not a question of "overcoming" these problems: people with dementia, say, will never overcome their condition (indeed, it will eventually overcome them), but that doesn't mean that those little acts of kindness that make their lives more bearable are pointless or unappreciated.
And there's a social dimension, too: in joining autism support groups we have met all kinds of different people who have been thrown together by a quirk of genetics. As you get older it's easy for your focus to narrow: to seek the company of people with the same social status and attitudes as yourself. In a perverse kind of way, having a child with a disability is an antidote to that, because it interferes with the ability to choose your associates. In the French film Le Huitieme Jour, a professional man moulded into a high-achieving routine realises what a narrow groove his life is stuck in when he has to look after a man with Down's syndrome.
So if I were a politician, this would be my manifesto pledge: everyone should be compelled to spend one day a month with a disabled person. I believe it would spark a benign revolution in people's social understanding. And make supermarkets much more pleasant places to shop in.