Monday, 4 September 2017

Extreme displacement

A little over three years ago our family underwent a violent change in circumstances. Magteld died, at the age of 38, from breast cancer, leaving the three of us who remained bereft and bewildered. To make things even more challenging, we had just emigrated to the Netherlands. Her long-cherished dream of returning, and mine of starting a new life in her country, was twisted out of shape in the last months when she was told her cancer had returned. We had sold our house by then and it was too late to pull back, so we pressed ahead like an Atlantic rower trying to outrun a storm. Magteld lived for just seven more weeks in her native land.

I am going to close this blog shortly. Euan turned 14 earlier this year and is at the point in life where his need for privacy outweighs my need to write about his progress. But before that I want to look at what we've learned about autism in the most exacting of circumstances. We've been tested by grief, by isolation, by the barriers of language and bureaucracy, and we've survived. I sometimes even dare to think we're thriving.

Looking back I sometimes wonder what on earth we were thinking of. It was like attempting to recite the complete works of Shakespeare from memory while trekking to the South Pole on crutches. The boys had to adjust to living in a new place, with new schools where the lessons were given in their other language. The country they called home and the one they visited would swap places and remould their identities. And at the same time a day was coming when they would no longer have a mother and look for guidance and stability from a father who was grappling with his own overpowering grief. We would go from being a cross-cultural family of four to an expat family of three, and so cross not one border, but two.


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How did we set about making sure that the boys were not left displaced and traumatised by this conflation of extreme events? They depended, and still depend, on routine and familiarity to orient themselves. They struggle to communicate, so how would they cope with switching language. And from my point of view the crucial thing was to find a way of recognising when they were in trouble, since both of them find it daunting and difficult to communicate their emotions. The solutions I found, and the lessons I learned in the process, will be the focus of the next few blog posts.

Sunday, 2 April 2017

Mudstones

Ah yes, I remember the milestones. The joy of sharing the early ones: smiling, chuckling, rolling over, crawling. Then came others that didn't go so well: listening, toilet training, talking. Talking, especially. Other parents would puff up with pride as they repeated their child's first words, followed by their first sentences, and then all the cute things they said as they experimented with language, while ours stubbornly refused to progress. Frustration gave way to anguish, stoked by false reassurances from well-meaning friends and relatives, until finally we heard the words we dreaded at first but ultimately craved: 'your son is autistic'.

When your baby is born childhood stretches ahead of you like a floodlit yellow brick road, lined with solid white milestones: here is talking, here is walking, here is hitting the swing ball in the back garden. In the distance you can make out university, the first pay cheque and the wedding where you get to make a tenderly triumphant speech. All parents find out sooner or later that this straight and narrow path is an illusion. The advantage those of us with autistic children have is that we find out much sooner. The knowledge that we will have to cut our own way through the thicket, in semi-darkness and with the ever-present danger of low-hanging branches, can be daunting and overwhelming. But once your eyes adjust it takes on the character of an adventure. And the deeper you go, the more you come to appreciate the beauty of the trees and the sense of pride, when you look back and see the path you have created. It may not be particularly straight or well paved, but it's indelibly yours, and it exists mainly because you kept hacking away.

I know people who still believe they're on the yellow brick road, even when their children are in their teens. They see David's B minus for an essay as a minor catastrophe, or go into convulsions if Lydia fails the entrance exam for Cambridge and must confront the horror of three years at Keele. I don't envy them. I pity them for being so blinded by the bright lights on the straight road that they live in constant fear that even the smallest deviation will send them over a precipice. When the reality is an uncharted forest that seems intimidating in the beginning, but through exploration becomes challenging, fascinating and rewarding.

In place of the milestones, I've created my own mudstones. Here are some of them: making it through a restaurant meal without anybody staring and tutting; eating vegetables that have been cut in the wrong shape; first phone call (age 12). And a few still in progress: tying shoelaces (age 13); losing the red mark on his forehead that comes from bashing it with his fist in frustration or excitement (I promised three years ago to take him out for cake when he achieves this one); telling me how much they miss their mum.


There was a time when I grew angry and resentful when other parents started up about their children clocking up the milestones (“He's so advanced! He was walking at 11 months.” – as if it could make the crucial difference one day in a job interview). These days I tend to nod and smile, and hope for their sake that the shock, when it comes, isn't too devastating. Most of us leave the straight path sooner or later, and it's often then that we discover the truth about ourselves. The unexamined life, as Socrates supposedly said, isn't worth living. Autism is a life of examinations, in every sense.

Saturday, 3 September 2016

The shame of it: Why do we still tolerate columnists who harass disabled children in public?

The rage of the privileged is an unedifying spectacle. I suspect most parents of disabled children have been confronted by someone like Tess Stimson, who wrote in the Daily Mail recently that people with special needs should not be allowed out in public until they've learned to mimic the rest of us. The object of her ire was a young boy – in her description 'about eight or nine', though Tess, as we'll see presently, is not the most reliable of observers – who was hitting a spoon against a restaurant table. He and his family had had the sheer bad luck to be seated beside Tess and her friend. After about 40 minutes of 'mounting frustration' at having her conversation interrupted, Tess leaned over and snapped at him to stop. At which point the boy's mother, who until then had been serenely unaware of the presence of a Daily Mail columnist at the next table, found herself dragged into a depressingly familiar scenario.

'The child's mother... stormed over, incandescent,' writes Tess. '”My son is disabled”, she shouted, pushing her face aggressively into mine.' I can only speculate, but perhaps the tone of this exchange was set by Tess 'pushing her face aggressively' into the boy's a few moments earlier. The mother then goes on to point out that her son is in a wheelchair. 'I must admit I hadn't noticed the wheelchair and did feel a pang of guilt,' Tess writes.

There is perhaps no finer metaphor for privilege than this upside-down response to a child's disability. The boy's family will certainly have noticed the wheelchair, every time they have to take the long route to enter a building, or wait for the next bus because another pram or wheelchair is taking up the next space, or phone a restaurant to make sure they get an accessible table. Accommodating the wheelchair is woven into the fabric of their everyday lives. But in Tess's eyes these challenges are eclipsed by the inconvenience of listening to a spoon striking a table for 40 minutes.

Just as hunger pangs are quickly banished by snacking on chocolate, so Tess dispels her fleeting sense of guilt by bingeing on self-righteousness. 'Criticising another's offspring, however anti-social their behaviour, has become a taboo in our child-centric society,' she laments. 'Particularly if the child has 'special needs', be that anything from ADHD to a broken leg.' Or perhaps we've learned the rule that if you have a problem with the way a child is behaving you should raise it with their parents first.

We do not learn from Tess exactly what the boy's specific needs were, and she doesn't seem especially interested. What we do learn is that she has a curious, 'one size fits all' understanding of disability, as seen from the equivalence of ADHD with a broken leg. Co-opting the 'some of my best friends are black' argument, she informs us that one of her children has Type 1 diabetes and has to inject insulin at mealtimes, but proudly observes that 'never once has this led to bad behaviour in a restaurant.' Now, Tess clearly has the advantage of me in her knowledge of diabetes. My understanding is that it's a serious condition that requires rigorous management, but never before have I seen it compared to a neurological condition. Children whose whole system of thinking is fundamentally different can't be compared with those whose mood is knocked off kilter by a sugar deficiency.

Tess insists that she sympathises 'deeply with the parents of any disabled child', but the mask soon slips and she exposes herself as that most tiresome species of hypocrite, a crusader for traditional parenting. The assumptions come thick and fast, but mostly thick: modern parents are 'lazy' and let their children 'run amok' 'because it's hard work enforcing rules'. 'Enough with the the kid gloves,' she declares; 'If someone can't control their child, they should leave them at home with a babysitter.' She extols the virtues of her own parents, who brought her children up to be seen and not heard, and declares that children with disabilities 'have the right to be treated like able-bodied children and that includes being disciplined when they misbehave'. She cites the example of her own daughter, who at the age of eight 'was discreetly giving herself insulin shots out of sight beneath a restaurant tablecloth'.

This last detail is telling, I think. Tess applauds her daughter for coping with her disability, but for masking it. The disabled must not look or act disabled, is the implicit attitude. They are welcome in society on condition that they stay discreet. If they are suffering, if they are isolated or overwhelmed, they should stay home rather than burden the rest of us with it. If this is sympathy, I'd rather go without it.

In the end Tess gets her way, as the privileged always do. When her sharp reproach stuns the boy into a hurt silence, she comments: 'Sometimes a firm, sharp word from a stranger can be far more effective than yet another empty threat from an overwhelmed parent'. Yes, it's easy to bully people into silence, particularly when they lack the verbal skills to stand up for themselves. But it takes a rare degree of boorishness to crow about it in the pages of a national newspaper. For Tess picking on the vulnerable is not merely justified, it is a courageous response to the forces of political correctness. 'No wonder no one dares open their mouth any more,' she says, directly after boasting of doing exactly that to assert her privilege over a disabled boy.

Parents who have put their children through hours of therapy, tried all manner of specialist interventions and cheered every hard-won scrap of progress, are understandably upset when they are branded lazy and irresponsible by adults who can't control their sense of entitlement. I doubt if Tess gave a moment's thought to the effect of her intervention on the family she upbraided, but many parents wouldn't dare to take their children out in public for months after that kind of setback. Tess, presumably, would see this as a triumph for civilised values.


I've never sought to 'control' my children. I'm not even sure I want to know what that means. I want them to grow up to be polite, thoughtful and considerate towards others, all qualities I find wanting in Tess Stimson. They mostly behave well in public these days, as long I keep two steps ahead of any potential setbacks. But even getting to this point has involved years of painful trial and error, and at every step of the way there have been Stimsonites chasing us out of museums, glaring at us in restaurants and humiliating us in the supermarket queue. My successes have been in spite of, not because of, these people's unsolicited advice and hectoring stares. To give up would be to collude in stigmatising my own children.  

Wednesday, 30 January 2013

Ditch the bungee rope: on 'growing out' of autism


A few weeks ago a study came out that appeared to make a startling claim: some children are capable of "growing out of autism". The phrase was widely used across the media and intended, presumably, to confer hope on parents sitting at home desperately trying to coax a few words, or a fleeting moment's eye contact, out of their children. It implied that there was still hope that your autistic child might one day become normal. I've always had a fancy for rewriting the Pinocchio legend in terms of autism, and these articles certainly gave me plenty of material.



On closer inspection there are a number of problems with this assertion. Firstly, as Emily Willingham points out, nowhere in the original paper in The Journal of Child Psychology and Psychiatry is the phrase "growing out of autism" actually used (though the journal's editorial does talk about 'recovery'). The scientific analysis is best left to people who, like Emily, know how to do it. I'd merely observe, from my experience as a parent, that while both my children have made good progress over the last few years, neither of them are any less autistic than they were as toddlers. And here's where we approach the real core of the issue.


Underpinning the notion of growing out of autism is an unhealthy presumption that autistic people can only make progress if we can somehow engineer them to be less autistic - to "grow out" of the condition. We want to tie them to a bungee rope and drag them back towards normality. (Having sprained an ankle the only time I tackled a bungee rope, I am only too aware of the full implications of this metaphor). Rather than valuing their abilities, we focus on their disabilities and how we can eradicate them. It's indisputably a good thing if we can teach a non-verbal autistic person to speak - or, failing that, to communicate by other means - but this doesn't mean they've become less any autistic. It simply means that they've learned a new skill.


And this is the truth about how autistic people "grow out" of autism: they don't. Autistic adults who integrate into society - and there are many who thrive - will talk about how they learned to cope. They develop strategies so they can 'pass' regular society. They learn to wear masks. Like emigrants who develop the ability to speak a second language fluently, they can be adept with their acquired skills even if they never truly resemble a native. In situations of extreme stress, or where they are forced out of their learned routine, the autism can become as debilitating as it was when they were children.

I question why this obsession with growing out of autism persists even when we have agreed to stop assuming that people "suffer" from autism. It suggests that we still have a way to go before we accept what autistic people can contribute to our society and stop viewing them, tacitly, as retarded or disadvantaged. The full name of the condition is Autism Spectrum Disorder: the focus of the treatment should surely focus on the last word of that phrase. There are plenty of examples of people who are on the autistic spectrum and lead an orderly life. They should be celebrated not because they have grown out of their autism, but because they have grown into it.

Saturday, 20 October 2012

The hardest thing to say


Seven weeks ago Magteld was diagnosed with breast cancer. It was a shock that ruptured the fabric of our family all over again. The first examinations indicated a fibroademona, but she was given a hospital appointment just to make sure. The day of diagnosis was my birthday. We would go to the appointment, then head out for lunch to celebrate the lifting of the shroud of fear from our shoulders.

And then two women we’d never seen before came into the consultation room and delivered the devastating news. They were a cancer surgeon and a breast care nurse, and the tumour was anything but benign. At that moment the future disintegrated.

The surgeon warned us, among other things, to be wary of people peddling miracle cures on the internet. We smiled wearily and explained that we were already well aware of that pitfall because of the children’s autism. Nevertheless, one of the first dilemmas we faced was how to break the news to the children. There were books available on how to explain cancer to children of various ages, but not ones with communication difficulties. How would we know if the message had got through to them, and how would they respond?

When Magteld took to bed after the first round of chemotherapy the boys seemed unaffected at first. As long as someone was making the sandwiches all was well. We put a huge emphasis on maintaining as much of the old routine as possible. But this could only work up to a point. Magteld had to cancel a trip to Hamleys one Saturday because she was too tired to take the boys into town. We knew that if we couldn’t explain these unscheduled setbacks properly, we would only be storing up more trouble for ourselves.

I first tried explaining it to Adam as we walked to school. I told him mummy was very sick and would sometimes be tired, but he could help her by not disturbing her and doing things by himself like getting dressed for school.

As the weeks went by he became more difficult and agitated. His top lip went raw from his nervous habit of sucking it down into his mouth. In turn I grew irritated with him for being disruptive while his mother was lying in bed feeling wretched.

One morning he told Magteld not to bring him to school because she was sore. A little detective work by her brought out the revelation that he saw her as a different mummy. It was only then that I realised that he was rebelling against the cancer rather than his parents. He hated the fact that his mother was sick. He wanted her to be the strong person who was always able to pick him up. And so every time one of us mentioned her illness he would froth with anxiety. He was agitated and confused, like a fly trying to escape a room through a shut window. She explained to him that she was very sick but was taking medicine to get better. The change of emphasis, from illness to recovery, began to settle him. It became the backbone of our discussions about cancer.

With Euan acceptance was more gradual. I expected him to understand that his mum was seriously ill, but how would he deal with it? His school found some materials about cancer and I discovered a series of superhero comics about serious diseases that tied in neatly with his Batman obsession. But for a while he seemed to showed no interest in either the comics or his mum’s state.

Euan often responds better to sensory clues than verbal information, and so it proved here. The turning point came when Magteld’s hair started to fall out. Every night when he came home from school he would her take her hat off and rub her head. One night Euan came up to me one supper time and said ‘Mum’s not well’. It was hard to hear from him, but it was also a good sign that the message was filtering through.

The other day he asked her if her hair would come back when she was better. Euan rarely asks questions, so I took his curiosity as a sign that he was moving towards acceptance. Then he asked: ‘In April, when Mum’s better, can we go to Hamleys?’ The aborted trip had gained a kind of totemic status in his mind, a yardstick of his mother’s sickness. And perhaps perversely, it became the conduit for reassurance: the cancer was no longer a vast, shapeless threat that made his parents sad and angry, but the thing that had stopped him going to the toy shop. The promise of a deferred visit once the treatment was over reassured him on two fronts: he could concentrate on his mum getting better, and the disruption to his routine had a measurable end-date.

Then came the final breakthrough. The next day Euan took out his diary, where he plots the upcoming events in his life - birthdays, school holidays and respite dates – turned to April 1 and wrote: ‘Mummy get better.’ And under the following Saturday he wrote: ‘Go to Hamleys’.

The hardest thing to say has not been that Mummy has cancer, but that Mummy will take a long time to get better. Sickness in a child’s mind is meant to be a fleeting thing. Slowly they are coming to understand that it’s a process that will still be going on long after Christmas. It would, of course, have been a different story if her cancer had been more advanced, but those kinds of hypothetical worries are for adults, not children. The main lesson I’ve learned in these first weeks has been not to add to their burden by heaping all our adult fears about cancer on top of their own.

Euan asked me another question just before he opened his diary: ‘In April, when Mummy’s better, will everybody be happy?’ Answering that, I reckon, will involve a bit more fieldwork.