Unspeakable

How can you grieve without language? It was a question we had to deal with even as we prepared to emigrate while Mageld was dying in April 2014.

We learned from the start that there was no point hiding things from the children. On the day she was diagnosed, 18 months earlier, Adam clung to her ferociously as she dropped him off at the school gates. She hadn't told him about the appointment, but he sensed an imbalance in his world. When she lost her hair to chemotherapy, Euan went through a routine of trying on her headscarves and rubbing her head when he came home in the afternoon. And when she learned the cancer was killing her, she sat down with them at the kitchen table and told them she couldn't be there for them in the future. 'But you're here now, mum,' Adam replied evenly.

When Euan started school he was assigned a play counsellor. She laid out games on the floor, gave him paper and crayons and tried to connect with him using the game as a prop. Euan scarcely responded. The language barrier, the strange surroundings and the unfamiliar routine left him emotionally paralysed. After a few weeks she delivered her report in which she said that he had little idea why he was in the Netherlands or where his mother was now. 'I asked him where she was and he said: “In the hospital”.' Yet we had made a point of taking the boys with us on every step of the journey, up to and including her death, and I couldn't recognise the description in the report with the boy who had clung to me at his mother's funeral and cried with anguish as the coffin retreated behind the curtain. Only now do I realise how Euan furled into himself in the months after Magteld died, as impenetrable as an armadillo in its shell.

To the outside world the boys seemed entirely unaffected by their mother's absence. A counsellor said to me: 'As long as they're not showing any signs of distress, don't worry.' If these words were meant to reassure me, they failed. It was inconceivable that they were unaffected by such a rupture in their lives, and the fact that they were unable to display or discuss it left me frustrated, alienated and anxious. The one time I managed to raise the subject at the dinner table Adam replied flatly: 'She died, and we don't want to talk about it any more.' Unable to tolerate my distress, Adam shut it out, sometimes literally: if he caught me sobbing he left the room and closed the door. We were like a dysfunctional version of the three monkeys: see no grief, hear no grief, speak no grief.

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Three years later it remains a largely unspoken trauma, an absence of an absence. My efforts to incorporate anniversaries and memorials into our routine have fallen on stony ground. Pictures of her hang in every room, almost invisible. I feel as if I am carrying the burden of memory alone, though sometimes, if I'm lucky, I can goad them into recalling a favourite film or a place we visited together. At a castle in Sweden two years ago Adam reminded me how we had stayed in a castle with Magteld a few years earlier – a wretchedly cold, wet weekend during our last winter in Scotland that was nevertheless full of warmth and hope. A breakthrough of sorts came when Euan's carer managed to coax a few snippets of memory out of him, in the borrowed language that he uses to communicate: 'Euan is worried about his family. His mother is in the hospital. And that's how he is very very upset about his mother.' It was the first time that he expressed his feelings, even indirectly. But it was not so much a chink of light as the blur of the sun behind the clouds. Without language the grieving process is silent and turgid, like a solo pilgrimage.

On Language

The public perception of autism has been transformed in the last decade or so. Even four years ago, when Euan was diagnosed, it received far less attention in the media than it does now. Representations of autism then were often restricted to Rain Man and a few exceptional individuals of the kind who used to be labelled ‘autistic savants’, such as the artist Stephen Wiltshire. Much as I admire Stephen and his work (see above), focusing on his talents doesn’t advance the cause of autistic people a great deal, because becoming a world-famous artist is only ever going to be an option for a very small number.

Lately there has been a wider focus in the media on the nature of the condition and the kind of help that autistic people need to cope in everyday life. Autism is a much more talked-about condition than it used to be, and in essence this has to be welcomed. Things have come a long way even since two years ago, when the Daily Mail published an appalling column by Carol Sarler in which she intimated that parents would be better off if they were able to abort autistic children. I’ll declare an interest here: as a freelance journalist, I work two days a week on the news website of Scottish Television. STV isn’t outstandingly good or bad in its coverage of autism, and in the media industry as a whole I genuinely feel the climate is improving.

Yet misperceptions endure, most noticeably in the language used to describe autism. It doesn’t help that this is often the subject of some debate within the ranks. For instance, the National Autistic Society advises journalists to say “a person with autism” rather than “an autistic person”. This reflects the trend for “people first” language in discussing disabilities, which is a noble sentiment, but in the context of autism I feel it is rooted in flawed logic. The phrase “autistic person” reflects a number of things, among them the quirk of English grammar that insists that adjectives precede nouns regardless of which word is deemed more significant. If you translate it into French, une personne autiste, the “people first” problem solves itself, and yet there’s no evidence that the French attitude to autism is more enlightened than ours as a consequence.

More seriously, I would argue that “person with autism” risks misrepresenting the nature of the condition. It implies that autism is an attachment, like a torn ligament or a brain tumour, which can be isolated and removed without otherwise affecting the individual, when to my mind autism is intrinsic to the person’s identity. It’s partly the reason why this blog is titled ‘Autistic Dad’. (As a working journalist, though, I recognise the need for consistent and agreed terminology, and will use it even if I privately disagree with it.)

Another flashpoint is the word ‘suffering’. One of the surest ways to raise the hackles of the autism community is to write or say that somebody “suffers from” autism or Asperger’s syndrome. I’ve read and heard two examples of this in the last fortnight alone. There are two conflicting responses here: on the one hand it’s insulting to people who get by reasonably well although they have some form of autism, and yet on the other there are autistic people who quite evidently do suffer, and we shouldn’t shy from saying so. The key point, I think, is that while they may suffer from depression, from isolation, from short attention spans or from an inability to express themselves, saying they “suffer from autism” is aggravating to people who have worked hard to overcome the more debilitating aspects of the condition. It also puts a too simplistic gloss on the way people experience autism, since a strong adherence to routine can be comforting, and even rewarding, in the right context.

And then there’s the question of whether to say “autism spectrum disorder” at all, since the word disorder is considered by some to be too negative. Here I’d come down decisively on one side of the fence. Autism might be an elusive term that covers a wide range of conditions, but “autism spectrum disorder” is a medical diagnosis. It’s not just about letting people make sense of themselves: it’s there to identify those who need therapy and intervention. Since the autism spectrum covers a wide range of both abilities and disabilities, the word disorder is essential to distinguish those children and adults who need medical assistance from those who have strong autistic traits but can cope unassisted. The urge to couch things in positive language is understandable, but we should be wary of the bleaching effect it can have on the more awkward and difficult aspects of autism.

These are not just technical points: language matters. It shapes perceptions and has a bearing on how the wider world interacts with the autistic community. In the case of autism, which can be hard to define and has been so entwined in myths and misunderstandings, it’s important to have an ongoing debate about language that reflects the changing perception of the condition. There are often good arguments on both sides and I’d welcome anyone who wants to put the opposing point of view.