Autistic Dad

Recovery: a conflicted position

2012-02-13T14:33:00.000-08:00

My eye was caught last week by a story that claimed some children with autism 'recover' as they grow up. It was based on a study that found that about a third of people who were diagnosed in childhood later lost the diagnosis and, according to the report, were 'no longer considered autistic'. It added that it was unclear whether this was due to a 'mistaken first diagnosis or actual changes taking place in their brains'.

The contention that people can 'recover' from autism is problematic. In the first place it is drawn from the idea that autism is an affliction that needs to be cured, which many autistic people reject. Of course some autistic people really do suffer because of their autism, whether from extreme loneliness, uncontrollable anxiety or the hazards that arise from a poorly developed sense of danger. Nobody would wish to deny these people and their carers the hope that something might one day come along to make their lives easier.

When my children were first diagnosed, I fervently hoped their conditions would improve to the point where they were able to live independently, hold down careers and experience all the pleasures (and trials) that relationships bring. And yet I feel profoundly uneasy when the word 'recovery' enters the discussion. It seems too black and white, implying a clear divide between 'autistic' and 'non-autistic' when the distinction is much more opaque. It restricts people's understanding of autism to the visible signs, which is at odds with the fact that autism is largely a hidden disability.

Many autistic people, especially those with Asperger's and high-functioning autism, make remarkable progress through childhood and beyond. They learn to function in social settings; they develop coping strategies that allow them to overcome their anxiety; they teach themselves, often through highly intricate methods, to recognise body language and the non-verbal signals that neurotypical people respond to instinctively. Good therapy can help this process and has got better as our understanding of autism has improved. But interpreting this progress as 'recovery' strikes me as misplaced and potentially self-defeating.

As Professor John Matson at Louisiana State University argues: 'When you're autistic, you're autistic. It's a very stable condition.' Many people with autism have the ability to learn social interaction, if perhaps in a more mechanical way than their neurotypical peers. If they make it, it doesn't mean that they've recovered, in the same way that deaf people don't lose their deafness by learning to lip-read fluently. It simply means that they've learned to cope. The danger comes when a situation arises in their life that they haven't taught themselves to cope with. Perhaps they have to respond to a sudden trauma or a relationship breakdown. If they are deemed to have 'recovered' from autism, how will they gain access to the support they need? It's hard enough, as a parent, to have to go back to square one every time your child starts with a new therapist or moves another rung up the educational ladder; how much harder must it be to have to go through all that as a self-reliant adult in your thirties or forties? Misleading notions of 'recovery' not only offer false hope, they also risk undermining the painstaking progress made by adults with autism over decades.

Why the Leveson inquiry needs to investigate the MMR scandal

2012-02-08T05:23:00.000-08:00

This is a long post - nearly 3000 words - and is slightly off-topic as regards autism parenting. However, it touches on subjects which a lot of autism parents will be very familiar with and the way in which autism is often used as a media bogeyman, so I think it's relevant. I also think the coverage of autism and other medical conditions ought to be more to the fore in the ongoing debate on media standards. This post is also going up on my journalism blog at http://wordsforpress.wordpress.com.

My main line of work – journalism – has been in the spotlight a lot recently, thanks to the Leveson inquiry into media standards. It has been uncomfortable viewing for everyone in the business who has any kind of conscience left. On Monday the editor of the Daily Mail, Paul Dacre, a man rarely troubled by such liberal encumbrances, took the witness stand. It should have been a watershed moment. Instead it was a washout.

Mr Dacre performed well at the inquiry. He championed his newspaper’s campaigning journalism, highlighting its front page identifying the murderers of Stephen Lawrence. He mounted a smart defence of those much-derided stories about light switches that cause cancer and launched a spirited attack on Hugh Grant, who had directly attacked the Mail’s newsgathering practices in an earlier session. With all due respect to Hugh Grant, however, it all felt like a bit of a sideshow. No doubt the world-famous film star was a little irked by the predictable arrival of press photographers on his doorstep demanding a snap of his new baby. But it’s not as if anybody died, or was made seriously ill as a result. Which is more than can be said with confidence for the Daily Mail and Mail on Sunday’s coverage of Andrew Wakefield and the MMR vaccine.

The unravelling of the MMR scare is well documented. In 1998, Andrew Wakefield published a research paper in The Lancet which found traces of the measles virus in the guts of some children with autism who were admitted to the Royal Free hospital in London. The sample was tiny - just 12 patients - but the coincidence of the two elements, measles virus and autism spectrum disorder, was remarkable enough to warrant further research. Wakefield, then a researcher, did not attempt any. Instead he held a press conference at which he launched a campaign for the triple MMR injection to be scrapped and replaced by single vaccines. This was despite the fact that his research did not turn up any direct evidence that the measles virus had got into the children’s guts through the vaccine. He justified the claim on the basis that eight of the 12 sets of parents believed MMR was to blame. “It's a moral issue for me,” Wakefield said. “I can't support the continued use of these three vaccines given in combination until this issue has been resolved.”

With a single leap of faith, the germ of a health crisis was sown. At first the UK media was slow to pick up the story. Then, towards the end of 2001, it exploded. Wakefield published a review paper, producing no new evidence but again questioning the immunisation programme. Then in February 2002 the BBC’s Panorama broadcast a documentary, Every Parent’s Choice. It was based on Wakefield’s campaigning in the US, where he had been embraced by the vocal anti-vaccination community. Although the programme pointed out that a succession of studies had failed to reproduce or substantiate Wakefield’s initial findings, it left the impression that there were two competing viewpoints of equal merit, when the bulk of scientific opinion, even at that stage, was against Wakefield. It also featured the “disturbing stories” of three families who were “convinced” the vaccine had caused autism in their children.

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This was the point at which the Daily Mail entered the fray. In December 2001 the Prime Minister, Tony Blair, had refused to answer a question about whether his baby son, Leo, had had the triple vaccine. The Blairs thought this was an intrusion on their privacy and a breach of their agreement with editors that their children would be kept out of the spotlight. The combination of a health concern and a prime minister on the back foot proved to be irresistible, and over the coming months the Mail mounted a diligent campaign demanding answers from Blair while stoking parents’ worst fears that they may be injecting autism directly into their children’s bodies. As Peter Hitchens wrote in a column celebrating his pre-eminent place in the vanguard of unreason: “Has he spoken to the parents of a child with autism, parents tortured by the thought that they may have brought about this misery by taking their doctor's advice, and Mr Blair's advice come to that?” You know, autism, that dreadful condition where children sit in the corner groaning and rolling their eyes. You don’t want to live with the guilt that you might have been responsible for creating such a monster, do you?

This crude caricature of autism was the cornerstone of the Mail’s campaign, encapsulated in a column by Julia Carling in June 2002 headlined “Why I wouldn't give my baby the MMR jab”: “When I see my daughter running around and playing with her toys I feel sick at the thought that I could possibly be the one responsible for changing all that if the fears of MMR and its association with autism are true. How would I feel if I never again saw my daughter play in the same way?” Instead, Carling turned her back on medical science and placed her trust in a trainee homeopath who, in her words, “takes a rounded approach by offering homeopathic and nutritional treatments which can complement a vaccination programme by strengthening the immune system.” Exactly what these treatments were, or how they helped, remains a mystery to this day, but mercifully, Carling did still immunise her child against measles. Thousands of others would not.

The effect of this coverage has been chronicled by the Economic and Social Research Council, which surveyed 1,000 people on their understanding of the MMR controversy in April and October 2002, the year of the Panorama programme. This was the height of the panic: more than 1,200 items in the media covered the issue that year, and more than half of those appeared in the month of February. In April, 30 per cent of those questioned were aware that the bulk of scientific evidence indicated that the MMR vaccine was safe. By October, that figure had dropped to 23 per cent. In April, 53 per cent of people said they would give their children the combined shot for measles, mumps and rubella; by October this number had declined to 47 per cent. In both cases about 30 per cent said they would opt for single vaccines and about five per cent would not vaccinate at all. (It’s worth considering, in the context of these figures, that single vaccines were only available privately at that time. People were not asked what their choice would be if the only options were MMR or nothing.) But there is strong evidence that public confidence had declined as a result of the intense media coverage. As the ESRC report noted, somewhat charitably: “The coverage was unintentionally misleading in creating the impression that the evidence for the link was as substantial as the evidence against it.”

I should pause here to observe that in 2002, and even 2003, the MMR-autism link was the subject of legitimate journalistic inquiry. Andrew Wakefield’s study had highlighted a matter of scientific interest which was of genuine public concern. There was no evidence at this point that his methods might be flawed or his motives less than honourable. And the medical community took great interest in his findings, for the good reason that if any link between MMR and autism could be established, it would yield valuable insights in both fields, particularly the nature of autism, which remains the subject of intense investigation. But all this was about to change as we started to learn more about Dr Andrew Wakefield.

In 2003 Brian Deer, at the Sunday Times, began investigating Wakefield’s background and the substance of his research. Within four months he had compiled a dossier of evidence detailing how Wakefield was paid with legal aid money to examine children for a case being brought in King’s Lynn, Norfolk, against vaccine manufacturers. Four of the 12 children he examined for his Lancet paper were from the same group. Wakefield had failed to disclose his involvement in the King’s Lynn lawsuit, which constituted a conflict of interest, and hidden the fact that some of the autistic children used in his study had been selected from the same families who were involved in the court action. On the back of this, The Lancet said Wakefield’s study was now “entirely flawed” and should never have been published. The following month, 10 of the 12 co-authors of Wakefield’s study retracted one of its key findings, that they had “identified associated gastrointestinal disease and developmental regression in a group of previously normal children”.

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It was clear from February 2004 that Wakefield was not to be trusted, and his Lancet paper was somewhat less than 24-carat metal. Nevertheless, you would have had to search high and low in the pages of the Mail titles for any such revelation. It ploughed ahead with its campaign, by now far removed from the question of whether or not Tony Blair should have cleared the air about little Leo's MMR jab. Blind fear, as the Mail stable know better than anyone, is a steroid for newspaper sales. And “revelations” about the MMR vaccine and its link to autism poured out of the Mail titles’ pages like raw sewage. A typical example came in the Mail on Sunday in May 2006, which reported on a study of 275 children with regressive autism and bowel disease by Wake Forest University in the US. Under the headline: “Scientists fear MMR link to autism”, it noted in the second paragraph: “The study appears to confirm the findings of British doctor Andrew Wakefield, who caused a storm in 1998 by suggesting a possible link.”

The startling thing about this story was that at the very same time, Wake Forest University was putting out a press release with the title: “Wake Forest researcher warns against making connection between presence of measles virus and autism”. Dr Stephen J Walker, whose study was the source of the Mail on Sunday’s story, said in the release: “We haven’t done anything to demonstrate that the measles virus is causing autism or even causing bowel disease.” There was nothing in his research to support the Mail’s contention that any scientist “feared” that the two were linked. The main justification for that claim came from the discredited Wakefield, who told the paper: “'The Department of Health and some of the media wanted to dismiss our research as insignificant. The excuse was that no one else had the same findings as us. What they didn't say is that no one else had looked.” This was a simple untruth: as Ben Goldacre notes, a paper had been published in March that year, in the Journal of Medical Virology, which studied children with regressive autism who had had the MMR injection to see if there was any trace of the measles virus in their bodies. None was found. Dr Stephen Walker’s study, which was less than a third complete when the Mail on Sunday pounced on it, was never concluded and its findings have not been published in any journal.

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In the meantime, something far more concerning was happening. This was the point at which the Daily Mail and its sister paper graduated from being pernicious, chauvinistic rags and became a menace to public health.

The panic that ensued after Andrew Wakefield raised the spectre of autism being linked to MMR had coincided with a sharp drop in the number of children receiving the jab. At the beginning of 1995, just after the national MMR programme was introduced, 92 per cent of children had received the triple vaccine. By 2004, this figure had dropped to around 80 per cent. The following year, following Deer’s exposure of Wakefield and the Lancet’s criticism of his paper, there was a slight upward trend, to 81 per cent, for the first time in a decade. But four years later, the Department of Health warned that immunity levels had “stalled” at about 85 per cent. Professor David Salisbury, the government’s director of immunisation, warned that “MMR uptake is still not sufficient to remove the serious threat of measles outbreaks”. And the evidence backed him up: the preponderance of measles rose rapidly in the early years of the 21^st century, peaking at 1,370 cases in 2008, and remain high today. In 2011 there were 1,030 cases in the UK, nearly three times as many as the year before. In France 15,000 cases were recorded, including six deaths, while in Germany there were two cases of subacute sclerosing panencephalitis (SSPE), a rare late complication of measles which leads to “progressive deterioration of behavior and intellect, followed by ataxia (awkwardness), myoclonic seizures, and eventually death." One of the victims, a 13-year-old girl, is thought to have developed measles after being exposed to an unvaccinated child at her local doctor’s surgery.

Unless somebody interviews parents in detail about why they chose not to give their children the triple MMR jab, we will never know the exact sequence of cause and effect that led to the fall-off in immunisation from the 92 per cent figure of 1995. Today the figure is back up at around 90 per cent, still short of the target of 95 per cent for so-called herd immunity. The consequences are clearer: measles, once on the verge of being wiped out in the western world, is virulent again in Europe, and children are dying as a result. It is almost wholly preventable: figures show that in 95 per cent of measles cases, the infected person did not have the two shots of MMR that give the strongest immunity. And there is a great deal of circumstantial evidence that the Mail titles’ distorted coverage, drawing heavily on the public statements of a doctor whose integrity had been widely questioned and topped by shrill headlines about unsubstantiated “links”, was itself intricately linked with the fall in immunisation rates across the UK. The continued prevalence of measles remains a concern with the NHS, to the extent that secondary schoolchildren are now being sent letters urging them to boost their immunity, in case their parents withdrew them from the vaccination programme during the last 10 years.

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The Mail titles kept the faith with Wakefield right up until 2010, when the General Medical Council concluded a three-year fitness to practice investigation with a damning report that found he had shown “callous disregard” for the children in his study and acted “dishonestly and irresponsibly” in the way he publicised his research. The Lancet at last retracted his paper from the public record. A year later, Mr Wakefield was struck off the medical register for good. With the crutch of its story removed, the Daily Mail and Mail on Sunday finally ditched their star witness and stood down the anti-MMR campaign. Even so, the papers remain unrepentant about their coverage. On January 29 2010, the day after Wakefield had been castigated by the GMC, the Mail published a leader column headed “MMR and the lessons doctors must learn” in which it placed the blame on Tony Blair’s stubbornness in 2001, and the government’s refusal to offer single vaccines as an alternative, for the whole ugly circus. (More recently the paper has reverted to type by blaming the French for last summer's measles outbreak.) The rejoinder 'physician, heal thyself' has rarely been more apt.

Tony Blair’s decision not to reveal Leo’s immunisation status in 2001, at a moment of high public anxiety about the MMR vaccine was a misjudgment. The prime minister and his wife had form when it came to shady medical advice, having placed their trust in alternative healers such as Carole Caplin and her mother. Similarly, it is a matter of regret that The Lancet took 12 years to retract Andrew Wakefield’s paper, and that the General Medical Council did not begin disciplinary action against him until three years after the first serious allegations about his integrity were made. But none of these misjudgments were as reprehensible as the Mail titles' decision to continue with the MMR campaign, particularly in the six years from February 2004 onwards, when Wakefield was increasingly being exposed elsewhere as a fraud. To borrow one of the Mail’s favourite lines, nothing can excuse such reckless and irresponsible behaviour. Many other media outlets covered the MMR-autism link when the controversy was at its height and questioned the wisdom of administering the MMR vaccine amid such public hysteria. But the Mail papers turned it a campaigning issue, sustained the myth of a connection between MMR and autism long after it had ceased to be a subject of legitimate public investigation, continued to portray Wakefield as a credible and diligent researcher, and in doing so complied in his deceit.

Paul Dacre is due to return to Lord Justice Leveson’s courtroom later this week. Unless he is asked about MMR – and it may now be too late – one of the most egregious episodes in recent journalism history will merit barely a footnote. It is a grave omission: a catalogue of bad practice and bad faith that went beyond mere distortion and sensationalism and may have had a detrimental effect on public health. The inquiry will have failed in its fundamental role of scrutinising ethical and professional standards in the British media, and its authority to pronounce judgment on them will be diminished. Because if helping to expose thousands of children to a virulent disease isn’t unethical or unprofessional, I can’t for the life of me think what is.

For this relief much thanks

2012-01-12T10:01:00.000-08:00

Last week Euan had his first night in respite care. It was an odd experience. Unlike other eight-year-olds he’s not really set up for sleepovers, and our nearest family is 300 miles away, so we could count the number of nights we’ve been separated from him on two hands. Not always easy when your child rarely gets to sleep before 10 and turns every mealtime into an impromptu karaoke session.

So we were deeply grateful when, after a year of quiet lobbying, the social work department (yes, we’re known to social services. Too right we are) managed to find a place at a respite home a few miles away. At the same time, we were anxious about the idea of him going away and being cared for by strangers. Professional, dedicated strangers, but even so. Euan’s communication is slowly improving, but he lacks the ability to say what he’s thinking or how he’s feeling. He can tell you what he wants or what he doesn’t like, but he still can’t say why. And if something is seriously bothering him, he dissolves into a fierce tantrum. So asking anybody else to look after him means investing an enormous amount of trust.

We had a tour of the facility a few weeks ago. It’s a child’s paradise - soft play area, swimming pool, TV room and sensory garden (which means things that make noises in the wind or have knobbly surfaces that you can run your fingers over). And four basic bedrooms: this was the point that I realised he really was going to be spending nights in here. Eventually it’ll be whole weekends. Weekends when we can pretend to be a bit more like an ordinary family, with only one autistic child who can enjoy a couple of days out of the shadow of his noisier older brother. Ah, bliss.

We went to pick up Euan on Friday morning, after his first night away. As soon as he saw us, he pulled his shoes on and made a dash for the door. You might have thought he was desperate to get away. But this is just how Euan divides his life: home is home, school is school and respite is respite. There can be absolutely no seepage from one into the other. He might make a good secret agent.

What I do know is that all of us felt refreshed for the change of routine. In the light of this, I was interested to read recently that respite care often reduces the need for other forms of intervention. It’s now acknowledged that the stress of raising autistic children puts a strain on the mental health of the parents and makes the children more anxious, which in turn increases the demand on the health service. In the worst situations, the child or the parents, or both, end up in institutions. So it’s disappointing to read that many local authorities are shutting down or restricting respite services as part of the ongoing budget cuts. It would be a shame if short-sighted politicians and their accountants took the view that respite care is some kind of dispensable luxury when for many families it’s the difference between coping and breaking down. And that, ultimately, is a more costly business in every sense.

Education: why it's not a matter of choice

2011-11-28T05:08:00.000-08:00

I won’t be signing the petition by 38 degrees which calls on David Cameron to reverse his policy of ending the ‘bias towards inclusion’ in schools. Though I agree with much of the sentiment behind it, and I wouldn’t trust the Tories’ plans on education as far as I could throw Michael Gove (the precise measure of which, alas, I have yet to establish under laboratory conditions), I find it too simplistic an approach. Like the petitioners, I’m not convinced that there is a ‘bias towards inclusion’ at the moment, but I’m still less sure that there ought to be one. And the whole debate about ‘parental choice’ risks obscuring a more significant issue about how we support children who need extra help in the classroom.

During the 2010 election campaign Jonathan Bartley, whose son has spina bifida, ambushed Cameron on the issue of ‘bias’. He had spent two years and considerable sums of money going through tribunals so that his child could be educated in mainstream education. But as Bartley himself goes on to say: 'this, at the end of the day, is a question of both resourcing and culture. Either we are for inclusion or we aren't. To include children with special needs in mainstream schools takes commitment and a lot of work.' It’s not (and here I depart from Bartley’s argument) about insisting on a “bias” either one way or the other. It’s about making sure the resources are in place to make sure that children are educated in the right environment, and given enough support to ensure they thrive.

My own experience comes from putting two children into the education system in Scotland. Euan was originally sent to our local primary school, chiefly because he was diagnosed too late to be given a place in a special school. His primary school did everything they could to accommodate him; his classmates, encouraged by his teacher, were hugely supportive of him even though he must have deafened them at times with his singing. But it became clear as the year went on that mainstream primary school was the wrong place for him. On the other hand, when Adam went to school two years later we fought a bitter battle against the education department’s recommendation to send him to a different special school because we felt he could cope in a mainstream primary school if he had the right support. And, so far, he has. So I have experience of arguing the case on both sides.

The problem with insisting on ‘bias’ towards mainstream education is that it implicitly relegates special education to the second division. For this reason I vehemently reject the language that describes special schools as ‘segregation’ and marks children who attend them as ‘written off’. If this is the case, then the answer is to make the education in those schools better, not to shoe-horn children who may be contented and thriving in special education into mainstream classrooms where they may end up being confused, neglected and bullied. Someone I know who works in a mainstream school recently commented on a disruptive child: ‘autism doesn’t begin to describe it.’ Actually it’s more likely that the opposite is true: in many cases autism only begins to describe a child’s condition. The full picture can be a mosaic of subtle disabilities that may need the attention of half a dozen specialists. Some children will thrive in mainstream if they are given adequate support, but sometimes we should accept that it’s too much to ask. Euan is now in a class of four children with two specialist teachers, a level of attention that a mainstream setting cannot possibly provide. There is a sensory room where he goes when he becomes overstimulated and a constant stream of therapists coming and going – again, not services we can reasonably expect to install in every primary school.

On the other hand, where a child is able to cope with the mainstream curriculum, it should be encouraged. Inclusion does have benefits for the whole class and sends out good signals about our attitude as a society to disabled people. But that goodwill is entirely worthless unless it is backed up by practical support. Unfortunately, the Tories’ cuts agenda means that classroom assistants are being laid off and services that might help disabled children, such as specialist after-school care, are increasingly thin on the ground. So more children go into the special school system who don’t belong there, to the detriment of everybody – mainstream education, special education and, worst of all, the child themselves.

The Tories’ answer of ‘promoting choice’ is a distraction from what really matters, which is making sure that children are given the right education in the right setting. That means providing classroom assistance where children are being included in mainstream, and ensuring special schools are adequately resourced rather than tainted with the language of segregation. It means doing that unfashionable thing: investing money in public services. Instead we have the latest alarming development, being pioneered in Lincolnshire, of inviting all schools, including special schools, to become privately run academies. I can’t begin to think how, or why, anybody would run a special school for profit. In fact, if anyone can convince me that Railtrack is a good business model for the education of vulnerable children, I’ll eat a train.

The myth of parental choice is that it is empowering rather than restrictive. It lands parents with the burden of securing a good education when it should fall on the state. It implies that some schools will always be worse than others, and that if your children end up in a rotten establishment it’s your own fault for not choosing wisely. Yet it’s worthless to offer people more choice if you simultaneously impoverish the choices on offer, as the government is now doing. And the reality is that parents who want to challenge the system will have less choice, not more, because of another cost-cutting measure: the withdrawal of legal aid support for education tribunals. Families who find themselves in Jonathan Bartley’s position will no longer have the means to fight the decisions the state has made about their child’s education. The solution is not more choice, but better options. If 38 degrees draft a petition on those lines, I’ll be the first to sign.

Beware the grief farmers

2011-10-29T02:35:00.000-07:00

At the risk of raking over old ground, and fairly morbid old ground at that, I wanted to revisit the subject of grief and autism. Firstly, because it was the catalyst for an intense and fascinating discussion a while ago on the Facebook page hosted by The Thinking Person's Guide to Autism. Secondly, because of some events I'd experienced at close quarters (though I wasn't directly involved) in which real, raw, agonising grief was a factor. And thirdly, because the concept is still mixed up with feelings of guilt, shame, and a sense that it is somehow the "wrong thing to feel".

The most common objection to grieving an autism diagnosis is that grief should be reserved for an actual death. Therefore parents who grieve for an autistic child are treating them as if they are dead. This will become a source of tension and resentment when the child gets older. I'd begin addressing this point by directing people towards Jim Sinclair's essay, Don't Mourn For Us, in which Sinclair (an autistic man who was non-verbal for most of his childhood) sanctions the grief response, on the condition that people understand that what they are really grieving is their own dreams and aspirations. They mourn a child who never actually existed. If it helps you to realise this, and accept that the child who was born is fundamentally different from the child you imagined, grief is an acceptable mediator.

I've made the point before that grief is a healing process: it allows people come to terms with overwhelming and irreversible setbacks in their lives. It is often confused with misery and self-pity when its true purpose is to overcome them. On the other hand, I have had it brought into sharp focus lately that the grief felt for a child who was never born is different in nature from the grief that accompanies actual death. Recently I read a heartbreaking, unflinchingly honest memoir by the Dutch novelist Adri van der Heijden about his son Tonio, who was killed in a cycling accident in Amsterdam last year. At about the same time, somebody I know in real life lost a close relative in similar circumstances. I wouldn't try to compare my own feelings with what those people must have gone through: the bewildering sense of random injustice, the raw shock and devastation, the evaporation of hope, which is all the more intense when a young person dies. At the same time, I reject the suggestion that other people's grief can somehow console me or diminish my own. The refrain that "other people have it worse" is invoked too cheaply, too often.

Grief is a healing process, but it has to be worked through. This is the other reason why I would argue it is not misplaced in the case of autism. The alternative is to be locked in a state of unresolved grief. There are, sadly, organisations out there which depend on parents being in this state. They want people to resist, angrily and vociferously, the idea that autism is an indelible element of their child's make-up. They want them to take up cudgels and campaign to "get their child back". They will offer them all manner of snake-oil remedies and false hopes of a "cure". And they will charge a hefty premium for spurious treatments, many of which are no better than witch doctors' potions. I think of them as the grief farmers, harvesting the misery of others for their own gain. They will play on the guilt that repressed grief engenders, telling parents that if they are not prepared to sacrifice everything they own for their children, they are betraying them (why do unproven treatments, as an aside, cost so much more than medically approved ones?). All of this misses the whole point that Jim Sinclair eloquently puts forward - that you cannot "reclaim" a child who never existed in the first place. You can give them therapy, acceptance and love, you can respect their autism rather than abhorring it, and they will have a chance to thrive. And you are much better placed as a parent to offer these things once you have worked through your grief. That's why I'll go on arguing that it's OK to grieve, because to deny grief is far more damaging.

A minor milestone

2011-09-20T14:04:00.001-07:00

The other night I had a conversation with Adam that blew my socks off. Here’s how it went.

‘Hello Adam.’

‘Hello Dad.’

‘Is mummy reading you a story?’

‘Yes.’

‘Which book is she reading?’

‘This one, it’s this one.’

‘Adam, I can’t see it. You have to tell me its name. What’s it called?’

‘The Snail and the Whale.’

It went on a bit longer, but you get the idea. What made it so noteworthy is that it’s the first time I’ve managed to talk to either of my children on the phone. Despite a few conceptual struggles – I can imagine Adam’s concentrated face as he holds the book up to the phone, not understanding that my voice and my eyes are four miles apart – he came through it pretty well. Adam is almost six and Euan is eight, so I’ve been looking forward to this moment far longer than most parents (some of whom struggle to get their children off the phone at this age), and perhaps it’s a little bit more special for that.

Cause, consequence

2011-08-19T04:04:00.000-07:00

Adam comes down for breakfast, smiling and bright as a button. He remembers something in his bedroom and dashes back up the stairs. Half a minute later I find him on the floor, distraught, face red and eyes swollen with tears.

I ask him what’s wrong. He points to a mug half-filled with water on the floor. “I didn’t drink my water.” Every night before he goes to sleep Adam drinks a mug of water in bed. It’s the last phase in a well-established night routine. Last night he must have been too tired to drink it, so it sat on the floor all night and when he woke up he must have knocked it over. Half the water is in the mug and the other half is seeping into the carpet in a neat ring.

“Do you want to drink your water, Adam?”

“Nooo! It needs to fill up!”

I go downstairs, fill the mug to the brim and tell him to come down and drink it.

“No! I can’t!” This is his standard response when he doesn’t know what to do. So I take the mug back up and put it on the radiator. This is no good either. He picks it up and puts it on the floor, on the exact spot beside his bed where it was before.

“Do you want to drink it now, Adam?”

“No,” he says and skips down the stairs to resume breakfast. The mug sits there until he’s left for school.

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A few weeks earlier we’re in the Ikea cafe, having meatballs and chips for lunch. It’s going well until Magteld filches one of the chips from my plate and pops it in her mouth. Euan is incensed. “You have to put the chip back!” he screams. She puts one of her own chips on my plate. But substituting a different chip isn’t what he means. He reaches into her mouth and tries to excavate the one that’s disappeared down her throat. No amount of explaining will convince him it can’t be done. He won’t give up until the plates are cleared and we’ve moved on from the table.

-----

We all remember those incidents when a favourite toy was damaged beyond repair and we still took it to our parents to fix, but these two incidents magnify that desire to undo mistakes to the point of intransigence. Adam didn’t want the water: he just wanted things to be put right. Euan was enraged by his mum’s refusal to undigest a chip. Do autistic children have more trouble than others understanding that sometimes there’s no going back, that not all loose threads can be re-ravelled?

On Language

2011-06-22T05:35:00.000-07:00

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.

Joining the threads

2011-05-19T05:19:00.000-07:00

If looking after children is a full-time job, looking after autistic children is more like running a small franchise. This blog is about the various health and education professionals we’ve dealt with since Euan was first diagnosed five years ago. I should preface it by saying that as individuals, they’ve mostly been professional, helpful and informative. I recognise they have their own demands and pressures, that working conditions are far from ideal and probably getting worse. But from a parent’s perspective trying to bundle up that care and manage it can be a hideous tangle.

In the context of both our children we’ve come into contact with educational psychologists, speech and language therapists, occupational therapists, social workers, paediatricians, and clinical psychologists, as well as various school and nursery staff. (This is quite a short list: plenty of other parents would add sleep counsellors, dieticians, various other doctors and therapists, and even the police.) Some of them are assigned fairly quickly; for others (such as occupational therapists) there is a waiting list. Many services are only available once your child has been diagnosed – which itself entails a wait of between six and 18 months. Most of them carry out assessments and write reports. These often contain a referral to another expert or therapist – which means going on another waiting list and adding yet another phone number to the lengthening chain.

The exact nature of their roles is not always clear to begin with. For example, an educational psychologist will assess your child’s suitability for a certain type of school: should they be in mainstream or special needs education, and what classroom support do they need? It’s only later on that you realise that this is an obligation to the education authority, not the parent, and that their main criterion is to fill places in schools, in the context of increasing budgetary restraints. Once you understand that, you can start to understand why and how they make their decisions.

From the parent’s perspective, the hardest and most daunting aspect of the exercise is getting everyone to work to the same script. Since none of them has a leading role, that task falls to the parent. Magteld has spent much of the last three years organizing meetings between schools, health professionals and therapists, sometimes as many as three a week. And still people ask her whether she misses working full-time. The more frustrating thing is that after putting in so much work to bring people together, the parent is often the one whose voice is crowded out.

The other major issue is communication. Schools, doctors and therapists who aren’t in regular contact seem incapable of talking to each other (this is one advantage of special needs education, where therapists work directly with the school). Contact with parents is even more sporadic. When Euan was transferred from mainstream to special needs education, none of his records went with him. All the work that his class teacher had done to understand and accommodate his needs dropped into a black hole. In the meantime, Magteld had fought a largely fruitless campaign to keep in contact with his educational psychologist. After not hearing from the person for months, we learned from the school that they had been in to see him every week. No reports, no feedback.

Professionals will protest that they are doing the best they can for your child, and mostly they are, but this isn’t the issue. Imagine a house being decorated by four different teams, each with a different expertise. But instead of working together on the whole building, they each take one wall and devote all their energies to it. None of them work together or even pay attention to the other three walls. So one wall is weatherproofed to the max but unpainted, another is immaculately painted but the guttering hasn’t been done, and so on. And none of the teams ever stops to ask the homeowner if they’re happy with the state of the house. That’s how managing the care of an autistic child often feels, with the parent in the role of the homeowner.

As a rule, experts are by definition the best placed people to make these decisions, but it's parents who have to live with and manage the outcome. For that reason they need to be at the hub of the decision making process. Yet all too often, keeping them updated is an afterthought at best. Pushing them to the periphery because they’re ‘awkward’ or they ‘don’t understand’ ultimately wastes more time and effort than it saves – and it does nothing for the child.

Why can't they just act normal?

2011-03-10T09:33:00.000-08:00

It’s a phrase you come to live with when you have autistic children, like a creaking floorboard or a dog in the street that won’t stop barking: ‘why can’t he just ...’ You hear it from teachers (though not, to be fair, at my children’s schools), from people in the street or the shop, from casual acquaintances or other parents. But above all, you hear it going round in your head like a refrain. Why can’t Euan just get dressed without being distracted by his Lego every two minutes? Why can’t he just watch a film without laughing loudly at every dramatic scene or kicking his legs in time with the characters on screen? Why can’t he just accept the fact that there’s no cheese in the house and he’ll have to have tuna on his sandwiches? Why can’t Adam just go downstairs and put his shoes on without lining up all his cars first?

At heart it’s a question about anxiety, but it’s also about anticipation. Autistic children seek comfort in routine because the world is a big confusing place. They look for cues and find them in the objects they know best. A report from a psychologist who observed Euan in school recently put this in perspective. Whenever the class moved from one place to another or started a new activity, he looked to another child or the teacher to prompt him. At playtime he waited for the other children to move before following them out of the room. Once he’s engaged in an activity he’s quite happy, but the transition between stages is difficult for him, especially if it’s interrupted before the end. Anything out of the ordinary raises his anxiety and make him agitate for the familiar. During a dance lesson he concentrated on the steps and managed to keep time with a partner, but as soon as he sat down he pestered his teacher to go back to class. On holiday or days out, he insists on going back to the car as soon as he’s seen what he came for. This might also explain why he’s suddenly much better at dressing himself now that he has a chart on his wall telling him what order to put his clothes on in.

And it’s this heightened anxiety that feeds back into my initial question. If I can’t have a cup of coffee before leaving the house in the morning, I feel mildly annoyed and probably a bit tired, but I quickly forget about it and start to anticipate on the next thing I have to do. But my autistic children don’t do this: they can’t shift between stages like this unprompted or anticipate what’s coming next. They need either a prompt from outside or a clue within the task that tells them that it’s finished and they can progress to the next thing. Deviating from the plan is literally unthinkable because they have nothing else to work with. The answer to the question ‘why can’t they just do it differently?’ is simply: ‘they just can’t.’

Visible means of support

2011-01-11T04:28:00.000-08:00

When Euan was first diagnosed (an event that seems a lifetime ago now), we were confronted with a void. Like many families coming to terms with autism, we felt terribly, achingly alone. This wasn't strictly true or fair on the various professionals who came and went, called us with advice and thrust helpful leaflets under our noses. All that support was good and instructive, but none of it felt very comforting.

In short, we grieved. And it hurt. And one thing that no amount of expert advice can do is take the pain away. Which is why I feel that one of the most important things we did at that time was join a support group. It reminded us that there were other parents in the same situation as us, who we could learn from or just lean on when we needed a crutch. It allowed us to talk about our experience with people who had been through the same process, who wouldn't judge us, feel the need to utter empty words of comfort, or console us with the thought that there were other people in the world who were had it worse.

Crucially, there was nothing formal or structured about the group’s meetings. Every two weeks we get together in a school staff room, put the kettle on, sit around and chat about whatever's on our mind. Trained nursery staff look after the children in a separate playroom. It gives us a rare moment to breathe and talk freely as adults while knowing our children are in good hands. A couple of times in the summer we have a day out together, and once a year some of the families spend a week in a holiday park. Many autistic children don’t cope well in places like hotels and airports, struggle with major breaks from routine and have a poor sense of danger, all of which can severely curtail their families’ holiday options.

In the past we've raised funds for the group through appeals such as Children in Need and Cash for Kids, as well as our own events like charity discos. However, as we’ve recently elected a government who've decided that the disabled should have their services cut so that bankers can continue to binge on bonuses, these sources of income are drying up. In any event, though, giving to charity is bound to be one of the first casualties of a recession. So on January 23rd a few of us will be donning red suits and false beards and running the Santa Dash in Glasgow to raise money for our group.

Small local charities don't need a great deal of money and can make a real, tangible difference to people's lives. In the case of our group, the funds pay for the creche facility for about 20 nights a year and cover the cost of the annual outings. Our members come from all walks of life: what brings us together is that we all live in the south side of Glasgow and have children with autism. Life isn’t all chaos and despair. Our children are a joy, not a burden, but they sure as hell put us through the mill sometimes. And at those times, the 90 minutes a fortnight when we get together over a cup of tea and share our experiences can feel like a lifeline.

If you’d like to sponsor me and support the South Side Communication Disorder Group, please get in touch here for details of how to donate. Because of the size of the charity we haven’t been able to set up a page with justgiving or any other online donation service.

If you live in the UK and want to find out if there’s a support group in your area, the National Autistic Society has a comprehensive Autism Services Directory on its website.

The grammar of emotions

2010-12-18T13:14:00.000-08:00

This blog entry was meant to follow straight on from the previous one. Somehow or other seven weeks have happened in between.

On one of the first occasions I visited a therapist in connection with Euan, I raised the subject of empathy. I was starting to understand that autistic people struggled to connect with others around them, and asked if Euan would ever get into a situation where he felt sorry for someone, but didn't know how to express it. 'Oh no,' she replied; 'an autistic person wouldn't think like that'.

This seems to have been the prevailing view until quite recently. Autistic people didn't identify with complex feelings because they just didn't have them. Their emotional lives were elementary and functional; they were essentially monochrome, oscillating between docility and extreme anxiety with nothing in between. It was supposed to be comforting, implying that they were inoculated against the nuances of deceit, betrayal, double-dealing and insincerity. They were innately honest, since they didn't perceive the value of saying or doing things purely for appearance's sake.

Yet the more I saw of autism, the less satisfied I became with this explanation. Not least because it seemed to alienate autistic people from mainstream society: if they didn't grasp shades of emotion, it implied they couldn't form deep and meaningful relationships. But also because it didn't chime with what I observed in my children's development. Although he struggled to intuit what other people were feeling, he was capable of understanding them if he was given enough clear signals. When Magteld went to bed one afternoon with a migraine, he went upstairs and got himself ready for bed without a word of fuss, even though this is usually an exhausting operation that can last several hours. When Adam swept his juice off the table in a rage and soaked himself, Euan screamed in sympathy, then fetched the kitchen roll and diligently mopped up the spill. These are not the actions of someone who can't feel your pain.

Here's a more contentious example, but intriguing nonetheless. During the summer we went to see the boys' great-grandmother in Holland. She's been widowed for some years, lives on her own and doesn't have much social contact. Her house has a large L-shaped living room that feels empty even when half a dozen people are sitting in it. Usually Adam is stubbornly indifferent to family members he doesn't see very often. But when we came to leave his great-grandmother after visiting for two hours, he suddenly started crying plaintively and calling out for her. It was so out of character that the only explanation we could think of was that he somehow picked up on her sense of loneliness.

The more I see of these responses, the more I think the problem is not so much a lack of empathy: with the right cues their empathy can be remarkably sophisticated. It's more an inability to decipher those subtle signals that people give out at times of emotional conflict - a failure to jump the chasm between what people think and what they say. If it's made explicit to Euan that someone is feeling sad, or tired, or sick, he can respond appropriately, but if you wait for him to work it out for himself, expect to be disappointed. A few autistic people have told me of the painstaking efforts they made to understand the invisible rules that others lived by, and the light-bulb moments when they manage to work out the correct response in a certain situation. In some ways it's like the difference between learning a native language and a foreign one: either way you have to learn the grammar, but the foreign student needs a textbook.

Biting the silver bullet

2010-10-27T09:44:00.000-07:00

At the end of a superb and insightful interview in Wired magazine (I urge you to read it if you haven’t done so already), Ari Ne’eman is asked a question that often lurks in discussions of autism: ‘If someone offered you a pill to wake up tomorrow without autism, would you take it?’ His answer was honest and devastating, in the sense that it was a direct assault on the emotions that underpin such well-meaning enquiries. He said: ‘That’s an intensely silly question. How can I draw a line around one part of my brain and say that this is the autistic part, and the rest of me is something else?’
Ne’eman is a 22-year-old autistic man who was appointed by Barack Obama to the US National Council on Disability last December. Not everybody was enamoured with his answer to the ‘autism pill’ question. Some parents attacked him for taking such a dismissive stance to their long-cherished dream of finding a cure for autism. It is a dream that has been enthusiastically, at times aggressively, championed, by campaigning charities such as Autism Speaks, which has ploughed millions of dollars into research into the causes of, and possible medical treatments for, autism. Faced with that kind of emotional input from parents who are gripped by the wish for their children to grow up normal, it takes a fair amount of kind of courage to call their hopes and desires ‘silly’. But if Ne’eman’s choice of words can change the flow of the conversation around autism, he will have performed a great service.
The ‘magic pill’ hypothesis comes up frequently in discussions about autism without anyone pausing to consider what the question actually means. In essence, it presupposes that autism is an alien or hostile force contained within the autistic person that could, if only we possessed the right medical knowledge, be extracted and disposed of at no cost to the host. Autism Speaks' I Am Autism video took this philosophy and tied it to a sledgehammer, addressing ‘autism’ directly as an enemy agent that parents would fight tirelessly to defeat using the irresistible forces of love. Even a serious and thoughtful commentator such as Michael Blastland, in his book Joe (which, again, I recommend highly), takes time out to express the wish that his son could be released from his autism.
In the case of parents struggling to bring up severely autistic or non-verbal children, these sentiments are understandable and hardly surprising. Yet at the same time, you only have to look at the thinking behind the ‘magic pill’ question to see why the idea is so abhorrent to autistic people themselves. It gives a mythical, alien quality to their condition and, by extension, to their essential selves. Or, to quote Ne’eman again: ‘That way of looking at autism is predicated on the strange idea that there was or is a normal person somewhere inside me, hidden by autism, and struggling to get out. That's not reality.’
Taking the more severely autistic of my children as an example, there are two points I’d argue here. The first is that as far as I can see, there is no ‘autistic part’ to Euan’s brain that can be safely removed; nor is it a filter that distorts the outlook of an otherwise ‘normal’ person. It is an intrinsic part of who he is. Suppose for a second that a ‘magic pill’ really does exist. One night, before going to bed, he takes it. The next morning he wakes up a fundamentally different person. The chemicals in the pill have triggered a violent change in his personality that affects the way he sees, hears, feels, interacts with and understands everything around him. His world is suddenly filled with emotions and sensations that he could never directly perceive before. Thanks to therapy, he probably knows they are there and has developed ways to accommodate their presence, in the same way that a blind person learns the layout of the furniture in a room. But now he has to cope with them in the raw, through the strange, intense contortions of people’s faces that now scream for his attention, along with a whole range of nuances and gestures that the rest of us spent our entire childhoods and early adult lives learning to interpret (and still frequently get wrong). Faced with such an explosion of emotional input, the only reasonable reaction that I can imagine would be a total nervous breakdown.
Secondly, the ‘magic pill’ aspiration, however earnestly expressed, symbolises a desire to relieve the parents’ anxiety and discomfort, rather than the ambition to improving their children’s quality of life. I’ve always declined to join the ranks of parents that vow to ‘fight’ their children’s autism, preferring to negotiate with it instead. Autism is a condition that can be mitigated through therapy, but the person will always be autistic. They may become high achievers, such as Temple Grandin; they may marry, have children of their own and enjoy the company of a (probably small) circle of supportive friends, but their relationship with the world around them will always be an autistic one. The role of the parent, in my opinion, is to see that they don’t suffer for it; the role of society is to exploit their abilities while providing for their disabilities. It doesn’t seem too much to ask.
Much of the protestations on the part of parents boil down to a single sentence: ‘We only want the best for our children.’ This is true: of course we do. But we need to understand that it is not enough to be well-meaning. Accepting autism means accepting there is no silver bullet that will cure our children. We have to understand them from the inside out, to see things from their point of view, to share their vision of the future rather than impose our own, and to give them the thing they really feel the lack of: empathy.

The sense of self

2010-08-25T09:44:00.000-07:00

As Euan gets older his behaviour becomes more evidently autistic. The lag between him and other children of his own age is unavoidable. Three-year-old children who don’t speak to strangers are quietly endearing; five-year-olds are shy and withdrawn; seven-year-olds are strange and uncommunicative. No doubt as a teenager he’ll be labeled sullen and anti-social. Last year, when he was in mainstream school, Magteld took him to a birthday party. When I asked how it went, she told me he’d spent most of the afternoon licking the goalposts. He didn’t go back this year. I tell myself it’s because he’s at a new school, and in any case it’s probably a mercy.
Often he struggles visibly to make sense of the world around him. It can provoke sudden, violent outbursts of rage or tears if things aren’t going his way, and not just in the normal sense of getting what he wants. He can be reduced to floods of tears if someone else mentions something that’s on the tip of his tongue – almost as if he fears the uttered words have been stolen from his mind and he can’t retrieve them.
Language, in a wider sense, seems to function differently for Euan. We’ve observed the familiar autistic traits such as echolalia and pronoun reversal. In Euan’s case, though, it seems to be something more profound. It’s not just the way he sees other people and objects: I get the sense it reflects the way he sees himself.
As I said, the early examples followed a familiar pattern. Euan would refer to himself in the third person and mix up ‘I’ and ‘you’. This is a stage all children go through, but it’s more pronounced and lasts longer in those with autism. I remember being at my parents’ house once and hearing his voice from the open cloakroom door: ‘Where’s Euan? He’s in the toilet.’ What’s interesting is that even now, when he’s sorted out ‘I’ and ‘you’, he still re-enacts snippets of dialogue in this way. Often it’s accompanied by an action: if he has an impulse to do something he shouldn’t, like tip back his chair or shout at table, he’ll often do it and immediately tell himself off for it. In extreme cases he’ll grab his own arm and drag himself into the hallway to stand in the corner.
Pronoun switching is more complex too. For a long time he’d say things like ‘she’s a boy’ and persistently switch ‘he’ and ‘she’. Once he told us about a boy in his class who had gone to hospital. He had written the story in his school book with his teacher and rehearsed it, but even in writing he insisted in saying ‘She was OK’ as the last line. Even now he has trouble applying Mum and Dad to the right parent.
The question naturally arises: is there something fundamentally different about Euan’s self-perception? The few studies I’ve found about this tend to argue against this – such as Dawson and McKissick, who write: ‘It was concluded that the autistic child's social deficits are not due to a basic lack of differentiation between self and other.’ It may be that this is a phase that Euan grows out of as he becomes more socially and linguistically competent. He has no problem differentiating between himself and other people: he uses ‘I’ to talk about himself, such as ‘Look, I made it’ when he builds a Lego model. But it still seems as if there’s a distortion in the way he perceives events that involve him. It’s almost as if he tries to view them from outside himself and replay them in his mind later, like a chess player going over the moves from a previous game to hone his strategy. The more I think about it, the more I get the impression it’s to do with control: if things happen that he doesn’t have command over, he has to go back over them, again and again, until he’s mastered the situation. It’s an untested theory, but it would explain much of the frustration, the anxiety and the constant restless activity. Social interaction is a skill which Euan has to learn painstakingly, through trial and error. That he’s prepared to put so much effort in is actually quite remarkable.

Starting School

2010-06-28T06:52:00.000-07:00

The school holidays have started. When they finish in seven weeks’ time, Adam will go to school for the first time. And slightly unexpectedly, he’ll be going to the local primary school rather than a special needs institution. It’s a decision we haven’t taken lightly, but it feels like the best choice we could make at this time.
Adam was diagnosed with autism in April. It was much easier to take in than Euan’s diagnosis, because Magteld and I could spot the early signs and health professionals were less guarded when they knew we already had one autistic child. There was a broad informal consensus that he would have a diagnosis so that when it came, it was a relief rather than a shock.
The most pressing issue was where to send him to school. Our first instinct was that he should go to a special school, like Euan’s, where the smaller class sizes would be less intimidating. One of Adam’s main difficulties is extreme reticence and selective mutism when faced with unfamiliar people or situations, and we reasoned that he was more likely to settle into a school routine if he was in a small group where he could get plenty of one-to-one attention. We had seen Euan come on in leaps and bounds since he moved to a special school, where his curriculum is tailored to take account of his learning difficulties.
We also had the experience of Euan’s first year at mainstream school. Although he eventually settled well into the class and made good progress in some aspects of learning, such as reading and writing, it was plain to see that he was in the wrong place. He was quickly distracted, and when the noise or activity around him got too much he became disruptive and would have to be taken out of class. Things improved when he was allocated a classroom assistant, but it was only through copious support from the staff, particularly his extremely patient class teacher, that he made any headway at all. It would have been unfair both on Euan and the school to have kept him there any longer.
However, when it came to selecting a school for Adam, other factors came into play. In the first place, there was no place available at the school Euan attended. This, we were told, was because the application could only be made once he had been formally diagnosed. It took well over a year for Adam’s diagnosis to be completed, and by the time it came through Euan’s school was full. The alternative was a different special school, three miles from home in the opposite direction and six miles from Euan’s school. And when Magteld went to see it, she saw it was far from an ideal option. I won’t go into the exact issues here, but the benefits were outweighed by the practical problems.
That left one realistic alternative. Magteld hastily arranged a meeting with the head teacher of our local primary school to see if Adam could be accommodated there. Though the experience of Euan had been taxing, we were reassured by the efforts the school made towards him. Moreover, while Euan has moderate learning difficulties, Adam has shown every sign that he is capable of following a mainstream curriculum in the right circumstances. The main concern is that he won’t have a classroom assistant because of a lack of resources, but the school’s attitude was positive and encouraging. On that basis, we decided the mainstream school was the best option.
We’re acutely aware that for all our careful preparations, it can still go wrong. The ongoing reorganization of Glasgow’s schools means Adam could be in a class of 30 children. If he struggles to settle he could easily get lost in the maelstrom. But on the positive side, we’ve seen that once he gets into his stride and sheds his inhibitions he can thrive. He’s keen to learn, able to concentrate and willing to socialize in spite of his poor communication skills. And the entire episode has taught us the value of taking an active role in Adam’s care. We had to recognize that the system was offering him a poor choice, then go out and find a better one.
It’s difficult as a parent to go against the advice of experts. It’s natural to worry that you’re succumbing to delusions about your child’s capabilities, especially with a condition like autism that can be hard to understand or analyse rationally. But I’m comfortable with the thought that we’ve thought long and hard, and informed ourselves as well as we could, before deciding where to send Adam to school. Whether it’s the right decision is something we’ll find out in due course.

Gary McKinnon: A Plea For Reason

2010-05-26T04:41:00.000-07:00

It's my usual policy on this site to keep entries to below 1000 words, and ideally to about 500. You're busy people and I'm a great believer in the power of editing. This one, for all my efforts, is about 1800. I can only plead special circumstances and pledge that normal service will shortly be resumed.

The arrival of a new government seems to have raised hopes that Gary McKinnon might be spared extradition to the United States on computer hacking charges. His latest application for judicial review has been adjourned to allow the new Home Secretary, Theresa May, time to consider the latest medical evidence. It is a welcome development. McKinnon’s case has been the subject of a highly charged publicity campaign ever since he was diagnosed with Asperger’s Syndrome and fears were raised that incarceration in a foreign jail would have catastrophic consequences for his health. Sadly, publicity comes at a price, and in this case the price seems to be the abandonment of the usual standards of compassion that apply to the disabled.

The strident campaign in support of McKinnon by the Daily Mail has sparked a backlash from commentators who instinctively believe that if the Daily Mail is in favour of something, it must be wrong. These arguments are summarised concisely in a blogpost by the Labour MP Tom Harris, misleadingly titled ‘The case for McKinnon’s extradition.’ In fact Harris makes no such case; he merely sets up a row of straw men and begins firing like a hick with a blunderbuss and a bad case of hiccups. Most of the ‘arguments’ he cites in support of McKinnon simply don’t exist. Take the idea that ‘Computer hacking is not a serious crime’. It most certainly is; we have laws against it in this country. Gary McKinnon accepted that he broke those laws and admitted his guilt when interviewed. He was prepared to accept whatever punishment the court saw fit. What he wasn’t prepared for was for lawyers from another jurisdiction to sweep in and threaten to incarcerate him in a maximum security jail for a decade or longer if he didn’t co-operate.

Here’s another issue: ‘Asperger’s sufferers shouldn’t be extradited – why not?’ Again, this wilfully misunderstands the opposing view. Nobody is calling for a blanket exemption from extradition for people with AS. The contention, voiced by several medical experts including Professor Simon Baron-Cohen, is that McKinnon’s mental health would be adversely affected, possibly to the point of suicide, if he were to be extradited. It is one of the most basic principles of justice that people should not be punished or made to suffer as a result of acts committed through mental incapacity. Harris asks: ‘Would this argument be made in favour of an Asperger’s Syndrome sufferer who had committed a less “acceptable” crime, like murder or child abuse?’ The straight answer is yes, it would. It wouldn’t be a conclusive argument in itself – just as it isn’t in McKinnon’s case – but AS has been successfully used in a defence of diminished responsibility in cases such as this one about a man who killed his stepmother.

At this point we ought to leave the low-hanging fruit such as Tom Harris for the wasps and address more pertinent accusations, such as those put forward on the Socialist Unity website. It’s argued here that the threat to McKinnon’s well-being has been exaggerated to the point of hysteria by a media seeking to whip up anti-American feeling. To quote: ‘McKinnon’s spin doctors have also created an entirely fictitious narrative of him being pursued under anti-terrorism legislation, and facing 60 years in Guantanamo or a hell-hole penitentiary.’ I’m not sure where the reference to Guantanamo Bay stems from, but there were certainly concerns raised that McKinnon might wind up in a maximum security jail. And these claims were well-founded. As narrated by the Court of Appeal (an institution unconnected, as I understand it, to the Daily Mail), McKinnon was offered a plea-bargaining arrangement by US prosecutors that would see him serve six to 12 months of a four-year sentence in the States before being repatriated. If, on the other hand, he resisted: ‘no substantial remission would be 'earned': he would serve a substantial sentence in a US prison, possibly a high security prison, with, at best a 15% 'remission'.’ The ‘substantial sentence’ was described as ‘8-10 years or possibly longer’.

Like it or not, it is impossible to detach the request to extradite Gary McKinnon from the political climate in which it was made. McKinnon’s extradition was sought during the days of the Bush administration, which was strident and unapologetic in its determination to ‘get tough’ on anyone who impinged on national security. The Court of Appeal mentions a widely reported statement by a New Jersey prosecutor that the authorities wanted to see McKinnon ‘fry’. Since this was presented in court by the defence and I have been unable to find the original attribution, I am sceptical as to whether it was ever actually said, but it is typical of the kind of language that was customary in the Bush era. The Canadian Supreme Court considered a case of 89 people whose extradition was sought on mail fraud charges. The American prosecuting authority appeared on Canadian television and issued this threat to those who refused to give themselves up voluntarily: ‘I have told some of these individuals, 'Look, you can come down and you can put this behind you by serving your time in prison and making restitution to the victims, or you can wind up serving a great deal longer sentence under much more stringent conditions' and described those conditions to them.’ Pressed further on what those conditions might be, he replied: ‘You're going to be the boyfriend of a very bad man if you wait out your extradition.’

This kind of bullying rhetoric almost certainly coloured the plea bargain offered to Gary McKinnon. It doesn’t matter that, as many commentators have pointed out, he couldn’t really ‘fry’ or spend 60 years in a maximum security jail for the offences for which he was charged, or that being raped in prison is not in the gift of a state prosecutor. The message was blunt and clear: surrender to us or we will make your life hell. To someone with Asperger’s, who is prone to taking things literally, it would have been a shocking proposition. Tell a child with Asperger’s that you’ll shoot them if they don’t behave and they’ll think you mean it. Say to an adult you want them to ‘fry’ in your prison system and they’ll be similarly terrified. Professor Baron-Cohen noted that one of the things McKinnon feared most about incarceration in the US was the prospect of being raped. The threat, in his mind, was real.

What underpins many of these counter-arguments, I fear, is a suspicion that Asperger’s Syndrome is not a serious condition and that McKinnon has ‘played the Asperger’s card’ in order to get off lightly. In dismissing his appeal for judicial review*, the Court of Appeal cited the previous Home Secretary's remarks that ‘despite having had AS in childhood his condition has, so far, not necessitated any type of treatment or medical intervention. He is aged 42. He faced arrest and interview by the police, arrest on an extradition warrant, an extradition hearing, the order for his extradition, and litigation in the High Court and House of Lords, all no doubt deeply stressful events without this leading to any acute events requiring intervention.’ This seems a strange conclusion, given that McKinnon is known to have suffered depression for several years. The fact that he has not sought treatment or medical intervention for his Asperger’s does not mean that he didn’t need it or wouldn’t have benefited from it. Like many people with AS, he muddled through life for about 40 years, drifting in and out of work, filling his leisure time with strange obsessions, struggling to form friendships and relationships and assuming he was just a bit of an inadequate individual. He was coping, but he was hardly thriving.

Asperger’s Syndrome, like all forms of autism, is a lifelong condition. That applies backwards in time as well as forwards. It’s not a condition like cancer, which presents itself in a previously cancer-free individual, sometimes after decades of unblemished health. It occupies the whole space between birth and death. If the law is unable to accommodate this basic truth, the law needs to be changed. Before you’re diagnosed with Asperger’s Syndrome, you have a similar but materially different condition: undiagnosed Asperger’s Syndrome. It’s distressing, bewildering and soul-destroying, and it’s completely untreatable because nobody can tell you what you’re suffering from.

Certainly McKinnon’s case is a complicated one. There is no suggestion that he is unfit to stand trial or incapable of understanding the charges he faces. But the implication that he is seeking to avoid prosecution or belittle the seriousness of his crimes is simply false. McKinnon has admitted committing offences that were indictable in this country. He accepts that he should be punished. He is challenging extradition, not prosecution. It is a distinction that his detractors need to understand. It has not helped at all that his extradition was sought by an administration that sought to make him comply by means of grotesque and exaggerated threats. On this, at least, there is hope: the language of the US prosecuting authorities has changed dramatically in the last few years, whether because of regime change or in light of McKinnon’s diagnosis. On February 23, 2009, the US Department of Justice wrote a detailed letter to the Home Office outlining what treatment McKinnon could expect if he were to serve his sentence in the US. It is quoted at length in the Court of Appeal’s judgment and is a far cry from the earlier promises of 15 years or more in a ‘supermax’ prison.

There is a sound legal case for why Gary McKinnon should be tried in the United States: his crime was to sabotage the US military computer network. But there is also a solid legal case why he should be sentenced (not tried, if he pleads guilty as expected) in England: he committed the offences from his flat in London, and the means exist for the English courts to impose an appropriate sentence. On top of that, there are strong humanitarian grounds for not placing someone in a situation that is likely to be detrimental to their mental health. Even allowing for the benign conditions now being offered by the Americans, the effect of being removed to an alien territory by force would be alarming and distressing to someone with Asperger’s and, in McKinnon’s case, the disorienting effect could well trigger a depressive episode or worse. It is unjust and inhumane to put someone who has admitted his guilt through this kind of additional trauma unnecessarily. You have to ask, finally: if Gary McKinnon had any other kind of disability, would he be treated in this way?

* I am indebted to the estimable Jack of Kent for gathering together the links to these court documents.

Stage Fright or Social Frustration?

2010-04-21T03:47:00.000-07:00

I’ve been watching Channel 4’s Young, Autistic and Stagestruck for the past couple of weeks, and despite the faux-hip title, it’s been excellent. (If you haven’t caught it, the last episode is on Monday, April 26 at 8pm). In contrast all those distressing documentaries that focus on the horror and strangeness of autism, this one makes the effort to portray the nine teenagers as individuals with distinct personalities. It underlines how no two autistic people are autistic in the same way, and yet they all share something in common. Several of them are making their first meaningful friendships within the group and it’s heartening to watch – when two of them went on a date to the cinema it seemed like a small miracle. And the parents, though present, aren’t allowed to intrude or dominate, which was the issue I had with a similar venture in the US called Autism: The Musical.
It all reinforced something I’ve observed in my own children. Autism is often portrayed as an anti-social condition, and in many ways it is, but it doesn’t follow that autistic people are inherently anti-social. Often they’re fascinated by social rules and rituals. It’s just that they don’t get them. One of the children in Young, Autistic and Stagestruck says at one point: ‘I don’t really make any friends, but I wish I could.’ And one of the breakthrough moments comes when the drama teachers stop trying to get them to ‘improvise’ and start handing out props. All of a sudden the children’s creative talents start to bloom, like flowers after a desert shower.
When Euan still went to mainstream school I used to watch him in the playground before class in the morning. At first he refused to join in, but after a few months he was bold enough to leave my side and play alongside the children from his class. He ran after them, a pace or two behind, and when they stopped, so did he. He had no idea how to start the games off and I’m not sure he even understood why they were running, but it was clear he loved being with other children, watching them and trying to join in.
How much of autism, then, comes down to what could be called social frustration? When most of us walk into a large room full of strangers, we find it daunting, but we can intuit our way through. We look for signs, little clues that people are available for conversation, and after a few minutes we’ve usually succeeded in striking up at least a superficial rapport with someone. To an autistic person, I suspect, those little cues and prompts are invisible; it’s as if they don’t exist. It’s like going fishing with a bath plug instead of a baited hook. Sooner or later you’re going to give up and go home, or start banging your head off the side of the boat in frustration. Seen in this light, my children’s behavioural quirks suddenly don’t seem so strange or alarming to me; they’re how anyone would behave in those circumstances.

Nursery Roulette

2010-02-17T04:10:00.000-08:00

Two good pieces of news to relate, both concerning Adam. He has a date next week for his diagnosis, and although we have a fair idea what the outcome will be, that official confirmation will still come as a huge relief. Not least because the information will feed into the crucial decision about what school he goes to when he begins in August. Because Euan's diagnosis was late, he had to go through a year of mainstream primary - something he was clearly unsuited to - and though the school jumped through hoops to accommodate him, it led to further upheaval when he transferred to a special school for his second year. With Adam our hope is that the process be smoother, easier and fairer for all concerned.
We have also secured a place for Adam in a specialist nursery where he will spend 12 weeks being closely observed by trained staff, who will then write an assessment of his progress. With three members of staff attending to half a dozen children, he will have the kind of individual attention that it's impossible to provide at a mainstream nursery. Sadly that's a problem that has been magnified by the attitude of the staff at Adam's regular nursery, who have done little to engage with his social difficulties or even acknowledge that there's a problem. When Magteld told one of the nurses to watch out for Adam hitting toys against his forehead, which he does when he's excited or overstimulated, she got the flat response: 'Oh, he doesn't do that here.' Meetings to discuss his progress were hamstrung by a perception that promoting the nursery's good practice was more important than evaluating Adam's behaviour. 'He's a good little boy, he's never any trouble, he just plays quietly by himself,' they'd say, entirely missing the point that the 'playing quietly by himself' bit was the issue we were seeking to address.
The problem stemmed, I think, from a failure to accept that Adam needed special assistance, perhaps underscored by a reluctance to seek outside help in case it was seen as an admission of failure. And we might not have been so persistent if it weren't for the fact that we already had a child with autism - which leads me to wonder how many other children in the nursery whose parents are less well informed are being denied appropriate medical intervention. Because that's what it comes down to - and while, as a parent who's been through the same cycle of denial and defensiveness, I'm aware of how hard it is to admit you don't have all the answers, my sympathy is tempered by the knowledge that doing nothing is far more damaging in the long run.
It makes me consider, too, how lucky we were with Euan, who went to a different nursery and was referred to the educational psychologist by the nursery's manager. Had it not been for her, he might well not have been diagnosed until after he started school. There is a growing body of evidence that early intervention is vital in tackling autism, but unless pre-school education is equipped with the right resources and an understanding mindset, children will continue to be diagnosed too late, or not at all.

More on Adam

2009-12-18T05:52:00.000-08:00

Magteld and I swithered for months about whether to have Adam assessed. There was nothing to worry about. There was something not right, but it couldn’t be autism, because he made eye contact, responded appropriately to questions and didn’t share Euan’s more extreme habits, like endlessly fidgeting or standing by the radiator singing to himself.
But the doubts kept nipping at us. As long ago as last Christmas we noticed how Adam wasn’t joining in with his nursery carol singing. We remarked on his curious habit of dragging toys across his field of vision. We registered his delayed speech and the way he froze in the presence of strangers. A playworker started coming out to see him once a week in April; it was October before she heard his voice. And then a couple of incidents happened that pretty much settled it.
A month ago Euan fractured his shoulder at school. We still don’t know how it happened: Euan’s communication is improving, to the point where a few weeks ago he was able to give me a basic run-through of his day. I never would have thought that a sentence like ‘we planted some potatoes’ could move me to the brink of tears. But relating something as complicated as a fractured shoulder remains a long way beyond his capabilities. Euan has a curious relationship with trauma: he will scream his head off if you threaten to take him away from the computer, and wail plaintively if his second slice of toast at breakfast time is a beat too late, but a really serious setback (thankfully, he’s only had a tiny number in his life) knocks him dumb. His shoulder was only noticed when a teacher saw him swinging his arm limply. When she tried to touch it, he flinched away. So Magteld took him home, thinking it was nothing more than a bruise, until he started wincing in pain in the early evening.
She took him up to the local Accident and Emergency department, with Adam in tow. I arrived soon after, straight from work. Euan was walking down a corridor wrapped in a blanket with Adam clinging to him, crying: “Euan, put your T-shirt back on” over and over again. “He’s very repetitive, isn’t he,” observed the nurse. While Euan sat quietly on the couch waiting to be examined, Adam was inconsolable. Nothing we said could assuage his sense of bewilderment. The routine was broken and he couldn’t understand why.
The week before he was about to leave nursery when one of the nurses reached into the fridge and handed him a carton of milk. The next day, at going-home time, he went to the fridge. Again he got a carton of milk. It was a classic case of kindness unwittingly being cruel. Because when, a few days later, the nurses stopped handing out the free milk, Adam was at a loss to understand why. No explanation in the world would suffice. His routine had been stopped, summarily. He howled all the way home.
How does this make him different from other children? In a word: rigidity. By the age of four, children ordinarily have a sophisticated arsenal of pestering techniques for getting what they want. All Adam can do is monotonously repeat the same demand. At times it's like watching a fly smacking its head against the same window pane again and again, oblivious to the possibility of other exits.

The thin line

2009-12-02T16:35:00.000-08:00

A while ago I was minded to respond to a blog I read by the BBC reporter Mark Easton in the wake of the Baby Peter case. Since then I've read several others that touch on the same question: what can we do to spot child abuse before it's too late?
Easton is a conscientious, fair-minded journalist, and I don't mean that as an opening gambit in some kind of veiled attack. He tackles with intelligence some of the darkest, most unfathomable excesses of society, including child neglect. Like anyone with a scrap of humanity, he is concerned that an incident has to escalate, sometimes to the point of murder or serious crime, before anything is done, and investigates the possibilities of improving early intervention. But unfortunately, in doing so he unwittingly raises the spectre of Bettelheim.
In studying the case of two young brothers who carried out a series of vicious attacks in Doncaster, Easton describes an experiment in which a mother was put in a sealed room with her child and instructed not to make eye contact in the usual way. Unsurprisingly, deprived of its tried and trusted means of communication, the infant quickly became hysterical. This experiment is used to illustrate an earlier point about the two brothers: "What these children's behaviour tells us is that they lacked empathy... Without it, even very young children are capable of horrifying cruelty." In a later entry, Easton comments: "Neglect is the most common form of child abuse and it is going on in your community right now."
It's perhaps unfair of me to single out Easton's sober analysis when others who may soon have a more direct influence on public policy are making more dramatic statements (such as Iain Duncan Smith's recent proclaimation that "there are now a growing number of families who are dysfunctional".) The problem is that now and again I come across a sentence in Easton's discourse that makes me shudder, like this one: "By the age of two, these children were clearly emotionally injured - some biting and scratching other kids, others cowering in a corner."
I've seen children cower in corners, or run out of the room to flee unwanted attention. I know children who sometimes kick, head-butt, bite, scream and scratch. I can't be sure they're not being abused, but I know there's another possible explanation for their behaviour, and I know because one of the children I've just described is Euan.
In the wake of the Baby P case it was reported that social workers felt under pressure to take children into care more quickly because of the widespread criticism they received for not intervening in time. There is no argument about the horrific nature of the abuse Baby P suffered, or the fact that social services were not properly alert to the danger he was in. The problem is that it's all too easy to start "seeing" abuse everywhere and relying on a blanket safety-first approach that has as much potential for harm as a laissez-faire one.
In the 1960s the now infamous quack psychiatrist Bruno Bettelheim caused a sensation with his book The Empty Fortress, in which he identified a hidden menace to society known as the "refrigerator mother". These women, by starving their offspring of love and affection, were inducing autistic behaviour in them, sometimes without being aware of it. He related the experience of autistic children to the concentration camps (which he himself had survived) and played a key part in the mass institutionalisation of people with autism in the United States. Only after his suicide did it emerge that he had falsified his qualifications in psychiatry, and allegations surfaced that he had abused some of the people in his care. His "refrigerator mother" theory has since been entirely discredited.
Bettelheim contributed to a climate in which children who displayed autistic traits were assumed to have been abused by their parents. My concern here is that when genuinely awful cases of abuse such as that of Baby P spark mass panic about the scale of child abuse, and when even reasonable commentators such as Mark Easton write that children who are withdrawn or uncommunicative are "clearly emotionally injured", there is a real danger of history repeating itself. We understand autism better now as a society, and the support given to families who have received a diagnosis is immeasurably better than it was in Bettelheim's day, but for families at the vulnerable pre-diagnosis stage, a wrong call or a hasty one can destroy the child's life. Parents of young children with autism are hugely suggestible, as they have no idea what they are up against; Magteld and I have both remarked that if somebody in authority had told us when Euan was a toddler that we were emotionally neglecting him, we would have accepted it unquestioningly. By then we were too confused, too emotionally exhausted and too scared to understand what was really going on. The diametric opposite of the experiment in which a child that normally relies on eye contact is deprived of it is the real-life situation in which a parent is driven to despair by their child's stubborn refusal to make eye contact or offer any other kind of response.
The understandable urge to identify child abuse at the earliest stage, and the rational (and probably accurate) fear that it is more prevalent than we as a society like to admit, cannot be allowed to obscure the need to obtain a full picture of a child's circumstances. As Easton also says, we need to understand more and condemn less. When you see a mother in the supermarket shouting in exasperation at a child who seemingly can't bring himself to look at her, it's easy for the untrained eye to assume abuse and forget that the mother may be suffering too. (This isn't just true for autism - perhaps they're both victims of an abusive partner.) What we need is trained eyes, and more of them, to ensure we distinguish genuine cases of abuse from those where other forms of intervention are needed. Otherwise our efforts to save one vulnerable group risk being to the detriment of another.

Small jig of delight

2009-12-02T05:34:00.000-08:00

A very short note to say that one of my blog posts from last year, The Consolation of Genius, has been named as runner-up in a competition run by the very lovely people at Leaf Books publishing, over in Wales. So big thanks to them; more details of the competition are on their website www.leafbooks.co.uk

And then there were two

2009-11-11T15:26:00.000-08:00

I wasn't planning to write this entry for a few months, but events have a momentum of their own and sometimes it becomes senseless to swim against the tide. So here it is: we're having Adam, our four-year-old younger son, assessed for Asperger's syndrome.
At the moment it can only be a best guess where his behaviour is concerned. Straight away I should acknowledge that his development has been very different from Euan's. For a long time we thought of him as the "normal" brother who would be burdened with sharing the care of his more severely disabled sibling. But as the months have drifted by it has become gradually clear that he has issues of his own to deal with.
Adam was, in the beginning, a much more communicative boy than his brother. When his grandparents came to stay about two years ago, he made a great show of saying "goedemorgen Opa en Oma" when they came down to breakfast. He went to toddler football and seemed to enjoy the games, though he wasn't so sure about joining in. See, we thought to ourselves: happy. Contented. Aware. Interactive. We can produce mainstream children after all.
He had a few odd habits, but nothing that seemed too serious. He liked to pick up toys, drag them in front of his eyes and set them down in front of him. As he became more mobile - and he was, and is, freakishly agile for his age - he would run up and down beside the hedge with his head swivelled through 90 degrees. Railings and anything else that produced a stroboscopic effect when he walked past it had the same effect.
And then there were the rigid habits: always the yellow plate, never the green or red one. If the yellow plate was in the dishwasher, he'd lie down on the floor rather than eat his breakfast. Give him a cluster of cars or building bricks and he would line them up in a row, then ignore them. The tone of our observations changed, from: "look how nicely he's playing" to "there's another example of inappropriate play," accompanied with a sigh and a roll of the eyes. We knew which way things were heading.
What really clinched it, though, was the speech. Adam was a chatty boy as a toddler, but became more withdrawn at around three. He pointed if he wanted something and nodded or shook his head, only using words if he was forced outright. Given a choice of two things, where he had to verbalise his choice, he would rather walk away. He was particularly taciturn around anyone outside the house, including his own family. It was so extreme he would even stifle his giggles if someone tried to tickle him. And then his nursery, after a lot of coaxing, admitted that he wasn't socialising particularly well, but they hadn't raised it as an issue because he's "no bother". As children who say nothing and just play by themselves tend to be.
We went through all the possibilities: perhaps he was just copying his brother's behaviour; perhaps he was suffering from selective mutism; perhaps he was traumatised somehow by Euan. None of them really fitted. His habits were different in nature from Euan's; he did speak to people, eventually, once he got to know them; and by and large he and Euan get on well, playing games and singing songs together. Sometimes it's as if Adam understands Euan better than we do.
The assessment is in January. I've put off writing about it until now because I fear pre-empting it, but the evidence taken as a whole is pretty overwhelming. And besides, Magteld and I have already more or less adjusted to thinking of ourselves as a family with two autistic children. For better or for worse.
How do we feel about it? Resigned. Fearful. Kicked in the teeth. Enormously anxious. It's coincided with a phase of Euan's behaviour that has become increasingly difficult to manage, as well as a loft conversion that's gone on for far too long. (The events are not unconnected: Euan has clearly been uptight lately because he's been promised the new bedroom at the top of the house.) This week Magteld finally yielded and called on the social work department for help. He will be assessed, though God knows when, given that the social work profession is going through its own traumas at the moment. In the meantime, all we can do is soldier on and repeat to ourselves the old mantra that autism affects children first and their families second. It's a harsh consolation, to say the least.

(An interlude) Temper, temper

2009-10-06T14:50:00.000-07:00

On the face of it, there aren't many advantages to having an autistic child. The disability money doesn't really compensate for the tantrums, lack of interaction and the deprivation of any chance of seeing your child grow up and blossom into an independent adult. Now and again, though, something positive emerges, often somewhere unexpected, to remind you that the effort isn't wholly wasted.
Recently I was in a meeting at which a manager took it upon himself to pull me up in front of my colleagues for my perceived lack of effort and poor teamwork. It's a surprise to encounter this style of management in the modern workplace, like stumbling across a sabre-toothed tiger in your allotment, but alas, it exists. His voice grew louder and louder, his tone more strident and hectoring, his argument less and less reasoned. His face started to go a funny shade of puce and he repeated a small repertoire of stock phrases over and over again. An unpleasant experience, in all.
I think it was the verbal repetition that triggered a gnawing sense of familarity in my head. But as his diatribe continued, I started to notice pieces missing from this tableau. He wasn't starting to flail wildly with his arms and legs, or utter high-pitched guttural shrieks. His face wasn't crinkling up into an expression of wild anguish, he wasn't lying rigidly on the floor screaming or slapping himself in the face, or jumping up to pull me down by the neck. More than once I had to remind myself I wasn't dealing with an autistic child but my workplace supervisor, a fully functioning man in his forties who was lecturing me on how to do my job.
Once I appreciated my manager was doing a rather tame impersonation of my son, I was able to apply the techniques I had developed to deal with Euan's tantrums. Firstly, I could detach myself emotionally from the situation and take in what I was hearing dispassionately. Secondly, I employed the rule "don't engage with the rage", declining the offer of a shouting match and waiting until the storm had passed before venturing a response. And in the meantime I could reflect on whether I should have any more or less respect for a man who believed he could earn it by acting like a six-year-old with a mental disability.
The specific conclusions I drew from the meeting aren't relevant here. But certainly I came away with a sense of how autism can provide a context for other difficult life situations. It supplies you with vast reserves of patience and inoculates you to some extent against the crude methods of the bully. Before I became a parent I would probably have run away and cowered under a desk. These days I'm more inclined to think: "The poor chap. He must be struggling so hard with himself."

Having a laugh

2009-09-28T14:53:00.000-07:00

It's commonly held that people with autism lack a sense of humour. Specifically, they struggle to understand jokes other than the most basic ones. No less a person than Hans Asperger declared that people with autism "never achieve that particular wisdom and deep intuitive understanding that underlie genuine humour" (translation courtesy of Uta Frith). Then again, you might say, he was Austrian, so what would he know?
Less flippantly, I have to ask: if autism is a humour-free condition, why does Euan spend so much time laughing? In fact, I'd go so far as to say that visual jokes are one of his strongest means of communication. He'll think of something funny, act it out, and look up for our response. The difficulty is understanding what's going on in his mind. When he shares a joke, is he really sharing, or just performing?
Euan's stock in trade is incongruity. There's a section of my Facebook page called My Children's Idea of Art which is filled with impromptu sculptures. Two plant pots with skippy balls sticking out of them; toy cars arranged among fruit in a bowl (actually, some of these are his brother's, but that's another issue...). On the flight to Germany he decided that the little tog that holds the flip-down table up against the seat in front of him was a tap, and spent most of the flight pretending to pour drinks into a cup, accompanying the action with gurgles of delight. He loves to take an object and put it somewhere it doesn't belong: stick-shaped crisps in a drinking cup being a recent example. When he does combine objects that belong together, it's in an incongruent way, such as the time he lined up four plastic buckets, filled them with sand, then planted a spade squarely in the centre of each bucket as if it were a tree.
Euan's sense of humour is idiosyncratic. Perhaps it's a way of subverting his own love of order and routine - if he can control the disorder, he can laugh at it. It may also be why he laughs like a drain whenever he sees someone stub their toe and wince - not out of cruelty, but at the sheer incongruity of seeing a soft toe combine with a hard skirting board, and the extreme contortion of the victim's face that results. Odd facial expressions are another thing that amuses Euan, which is partly why it's so hard to tell him off. The more the rage registers in your face, the greater his delight.
It still leaves the question of whether he does, or can, interact through jokes. I have a sense that it might be a way to connect with him. Verbal jokes are still beyond him, but the evident joy he takes in inventing, sharing and - more rarely - getting jokes contain some encouraging signs. When he looks to someone's face to see if they're laughing, and laughs even harder in response, it's a kind of communication. The next step is regulating it, which means teaching him, among other things, that stubbed toes aren't always funny. But mostly they are.

What lies beneath

2009-09-19T15:46:00.000-07:00

Euan has started attending a special needs school. The first week was difficult and exhausting, and not just for him. He would come home from school almost suffocating with bewilderment, letting out strangulated screeches at the slightest provocation, kicking, yelling and crying until bedtime. Everything was strange and frightening, from the bus that picks him up at the door each morning to the new teachers, the smaller class sizes, the unfamiliar mode of learning and the absence of his classroom assistant from his mainstream school. Each of these changes on their own might have been bearable: coming all at once, they must have felt like diving into a bed of nettles. Somebody recently introduced me to the "Coke bottle" analogy of autistic children. They can seem placid and contented during the school day, but all the time they are storing up stress on the inside, like a coke bottle being shaken, and once they come home, the lid blows off. That was Euan for his first week at school.
Slowly, though, he is adjusting to his new surroundings. One thing that helped was being allowed to take his teddy, Greeny, with him. At first we tried to dissuade him, believing like good parents that toys should stay at home. Then we went to a meeting with his teacher and she showed us a photograph in the corridor of Euan holding Greeny. Next she took us into the classroom and explained that Greeny had taken on the role of Euan's monitor, acting as a conduit for explaining his tasks and a reward if he behaved well.
Watching special needs education in action has been a fascinating learning process for us. There is endless negotiation, glacial progress at times, but underpinning it is a tremendous sense of purpose and achievement. Developments are small but revealing. Euan is already benefiting from the closer attention of his new school. His language is improving and he has started drawing stick figures, which gives us a new way to tell stories with him. And then there is the question that keeps coming up, the one the teacher put at the heart of our meeting: "How much does he really understand?"
The short answer to this is: a lot more than we imagined even a few months ago. Euan's mind is constantly turning up surprises. I wrote not so long ago that his affinity for numbers seemed to be more to do with remembering sequences than calculation. Then today something happened that knocked that whole presumption out of the water. Euan was listening to a CD on the computer using Windows Media Player. He likes to watch the visualisations and the time bar that fills up across the bottom of the screen as the track progresses. Today he took things a step further. As he listened to the CD tracks, one by one, he clicked on the time bar and slowly dragged it across the screen, constantly checking his position against the figures on the right which show how much of the track has been played out of the total time. So when the figures showed 1:30/3:00, Euan would have the bar exactly in the centre of the screen.
It wasn't an exact science, but he unmistakeably knew what he was doing. And what he was doing, unmistakeably, was calculating what proportion of the track had been played and expressing it visually. When I though of it like that, I was astonished. It reminded me of what someone had once said about Paul Gascoigne: he may not be bright in the academic sense, but he can measure in his head in a split-second exactly how hard to kick a ball so that it lands at the feet of a team-mate who is running towards a spot 60 yards away. Just as footballers possess a remarkable natural sense of physics, so Euan seems to some kind of instinct for division.
Similarly, we have tended to assume that Euan's ability to read was limited to recognising words rather than understanding meaning. That was until he picked up one of his Sesame Street books and read out loud: "Wake up! Wake up always! The sun is all on!" The interesting thing is that these aren't the words on the page. The actual words are in Dutch. What Euan was reading out were his own translations. Imperfect ones, as you might have realised, but translations nonetheless. "The sun is all on" should be "the sun is already up", but the Dutch words for "already" and "up" can mean "all" and "on" in other contexts. So Euan can work out single words and two-word phrases, but struggles with sentences. At least, that's what we'll think until something else happens to make us revise our opinion.
This is not told simply for the sake of parental pride. Euan's intelligence is hard to measure on any meaningful scale and even harder to exploit. His attention span is severely limited, he is hard to motivate and any change in routine or switch of task is met with howls of resistance. But now and again we catch a glimpse of what might be going on behind that glazed expression, and it is a tantalising prospect, like shining a torch into a crystal-lined cave.

Chaos amid order

2009-08-27T14:54:00.000-07:00

I came across this painting while on holiday in Germany. Titled Pope Nicholas V Visits the Burial Place of St Francis of Assisi, it was painted by the French-Flemish artist Gerard Douffet in 1627 and depicts (I learned later) a popular legend of the time, which states that when the Pope visited the saint's last resting place in 1449 he saw the form of St Francis floating above his tomb. What fascinates me about the painting, though, is not the apparition of the holy man or the Pope's serene expression, but the fact all around them scenes of unbridled chaos are erupting. A riot is breaking out in church, and the appointed leader of Catholicism seems either oblivious or powerless. (It's worth noting that this painting was created just as the Thirty Years' War was getting going, a savage sectarian conflict that left seven million people dead and large areas of Germany depopulated.)
What has this painting to do with autism? Nothing much, except that at the time I viewed it Euan was creating a chaotic scene of his own. The painting is at the far end of the gallery in the castle of Neuburg an der Donau, a huge hall where Euan delighted in the wide open space. As he ran around, shrieking at high pitch and revelling in the acoustics, the battle to contain him began to look desperate. Then we realised that the gallery attendants were shadowing us in pairs. One of them confronted Magteld as she grappled with Euan and ordered her to silence him. Shortly afterwards they started pointing out the exits, even though we hadn't asked to be shown them. No other visitor, to my knowledge, had complained about him. What a pity that such great art should be in the custody of such small minds.
Being on holiday with Euan was a constant reminder of how he struggles to make sense of the world around him. We did some preparation work, putting together a picture book of what he could expect to see on holiday. That helped us get through the airport: he had no trouble accepting things he'd seen in pictures, such as the hire car (renamed the "special holiday car" in the book), or the holiday home. But episodes such as the one above showed how hard he finds it to be in a strange place. It was particularly noticeable on the day we went to Legoland. Euan had been primed for the trip and loved going on the Lego trains and boats. But after a few hours he looked exhausted, confused and angry. It was as if his brain had used up its capacity to take in new experiences. His eyes looked sluggish and vacant, almost as if he was sedated. He lashed out at the slightest provocation. We left there and then, before the memory was too badly stained.
Euan often acts as if his mind runs on tramlines: if we deviate from a preset route, or go off in an unknown direction, he rapidly becomes anxious. For instance, we drove 100 miles to Nuremberg, then walked 200 yards and sat down at a cafe for coffee and juice. Immediately after that Euan wanted to go home, and protested loudly and repeatedly as we trudged round the city. He thought the sole purpose of the journey was to go to the cafe, and couldn't comprehend why we weren't going straight back home once we'd finished.
For all that, I have fond memories of our holiday. We visited Munich twice, went to Augsburg zoo and Legoland, swam in the local outdoor pool and went walking in the Urdonautal. For Euan the highlights were watching the Simpsons on television (he couldn't care less that it was in German) , going to the local adventure playground and, of course, Legoland. Once we'd been there he wasn't interested in much else and he spent the last four days impatient to go back home on the plane. I could easily complain about his inability to adjust, but when I think of how hard he tried to make sense of the blitzkrieg of new experiences, I can only admire him. Where we soak up the novelty and excitement of the bustle of a strange place, to him it must seem as chaotic and disturbing as the scene in Douffet's painting.

Gary McKinnon

2009-07-06T16:49:00.000-07:00

Something quite unaccountable happened today. I crossed off one of the items on the list of "things I never thought I'd do," in between abseiling off the Eiffel Tower and buying tickets for a jazz concert. I signed a petition on the Daily Mail's website.
The petition in question calls on the Home Secretary to drop the extradition case against Gary McKinnon. As many people know, McKinnon faces trial in the United States for hacking into Nasa's computers while searching for evidence of UFOs. Initially he was charged under the Computer Misuse Act, offences which he admitted and expected to be sentenced for in a British court. Then, all of a sudden, the Bush administration decided it would rather make an example of him. Two US states sought his extradition for causing $700,000 worth of damage to computer systems. Prosecutors accused him of perpetrating "the biggest military computer hack of all time " and openly expressed their wish to see him "fry". The rhetoric became more belligerent. Mark Summers, an official representing the US government, told Bow Street magistrates considering his extradition that McKinnon's actions were "intentional and calculated to influence and affect the US government by intimidation and coercion."
Throughout this time, Osama bin Laden was roaming the mountains of Pakistan, unimpeded save by his kidney dialysis machine. Meanwhile, the most powerful nation on earth was hunting down and smoking out a lone unemployed middle-aged hacker, sitting up all night in a suburban house in London looking for aliens, and being so careless about covering his tracks that he left signed messages on the hard drives he infiltrated, sent from his own e-mail address.
There was clearly something not quite right about Gary McKinnon. He quit his job and split up with his girlfriend as his fixation on UFOs deepened. His dope smoking got out of control. He said: "I'd stopped washing at one point. I wasn't looking after myself. I wasn't eating properly. I was sitting around the house in my dressing gown, doing this all night." (see BBC News) In hindsight, it's a wonder he reached the age of 40 before being diagnosed with Asperger's syndrome.
There can be little doubt that his disability was a decisive influence on his behaviour. With nothing to temper his obsession, it gradually overwhelmed him. The extradition proceedings should never have come this far. The fact that, having been diagnosed and received counselling, he has come to understand the wrong of what he has done, ought to satisfy any sensible government that he does not pose a threat to global security. He deserves an appropriate punishment for his crimes, but not to be locked away in a foreign country until the end of his days. If the Americans had any sense, they'd give him a job. He'd probably be the most diligent, loyal employee they've ever known.
As for the Daily Mail, it's only six months that the newspaper published this notorious op-ed piece by Carol Sarler suggesting that autistic children should be aborted before birth. Now it's gone from excluding autistic people from its general prohibition on abortion to championing their human rights. The sea change is quite startling, and welcome. They have made a calculated risk that will alienate some of their readers, but no doubt they decided that the opportunity to poke the Home Office with a sharp stick, combined with the chance to support a helpless British man in his struggle against a foreign court, made it a cause worth defending. Credit must go, too, to Gary's mother, Janis Sharp, who has worked tirelessly to maintain the vigil for her son.
It's a distinguishing feature of a humane society that its institutions should be able to deal with the disabled. I still believe that there is a sense of humanity at the core of this government. If Gary McKinnon is extradited, I shall have to accept I was stupid and naive.

The Hanen programme

2009-05-21T09:30:00.000-07:00

For the last 10 weeks we've been attending the Hanen programme, a speech and language course that teaches parents how to help their children communicate. Developed in Canada in the 1970s, it's one of the most widely used programmes of instruction for parents whose children have been recently diagnosed. It breaks down the communication process into small steps: how to intrude in their solo play; cutting out unnecessary words and phrases; using cues to make games and activities interactive. It shows, for example, how bedtime routines can be made more manageable by breaking them down into a series of small, predictable steps that the child can follow. Removing the source of anxiety, whether it's over-stimulation, under-stimulation or outright bewilderment, is often the first step on the road.
Perhaps the genius of the Hanen strategy is that it tackles a hugely complex problem in simple ways. It doesn't promise miracle cures or insist on strict, unnatural routines. It doesn't bombard you with arcane jargon (though the developers are a little too fond of acronyms for my liking). And neither does it frighten you into thinking that your child will be locked away in a cocoon for ever unless you follow its instructions by the letter. Instead it focuses on the relationship between parent and child and takes a structural approach to interaction on the activities you're already doing with your child and looks to incorporate them into an overall structure.
My one reservation is that by the time we attended the group, Euan was already starting to make progress in his speech and it felt as if some of the advice was already redundant. That's not the fault of the organisers, as we'd had to turn down a place in an earlier programme. But it does illustrate that Hanen is best suited to parents whose children have just been diagnosed.
However, during the 10 weeks of the programme Euan became markedly more expressive and sociable. His speech is suddenly more sophisticated - yesterday he asked for a towel, unprompted, when he spilled his milk at the breakfast table. It's hard to believe this was sheer coincidence. His school reported that he was starting to use spontaneous speech, asking the teacher for help, for example, where before he would have looked lost or got upset. In the playground I've watched him start to play with his peers when only a few months ago he stood sentry-like by my side, watching thoughtfully as the other children ran around him.
On the whole, I'd recommend it. Don't expect to have all your questions answered instantly or to see your difficulties vanish overnight. Understanding an autistic mind can feel like untangling a ball of string, but really it's a lot more complicated than that. The Hanen approach is more akin to setting guidelines that leave the key decisions in the parents' hands. As such, it's empowering. It also emphasises that progress with autistic children should be measured in short steps rather than giant leaps: it takes time and effort, but you'll get there if you persevere.

The ignoble Savage

2009-05-06T05:24:00.000-07:00

Thanks to the pre-emptive actions of Jacqui Smith, it looks as if I'll have to shelve any plans to go out for a drink with Michael Savage in the near future. The crude, loudmouth “shock jock” who has made a lucrative career out of firing off insults at gays, Muslims, autistic children and anyone else whose face he doesn't like has been banned from Britain.
I find this a hugely puzzling and self-defeating gesture by the Government. Everything Michael Savage (not his real name, but a camp showbiz sobriquet in the tradition of Coco Chanel) has to say about autism is offensive, pigheaded and plain wrong. But does he really pose a serious threat to the foundation of our society, as Jacqui Smith implies in grouping him with suspected terrorists? If that were true, I'd have to question if we had a civilisation worth defending. Preachers to the ignorant, which is what Savage is, are aggravating, attention-seeking and sometimes disturbing (not unlike autistic children, in fact), but the very last thing they should be seen as is threatening. It stokes their misplaced sense of self-importance and allows them to portray themselves as “the little man taking pot shots at the powerful” when the very opposite is true: Savage has earned a tidy fortune and a huge media presence from peddling his uninformed prejudices, at the expense of some of the most vulnerable in society.
Savage's arguments aren't hard to knock down. He says: “There is no definitive diagnosis for autism. None.” This will come as a surprise to the three doctors who wrote a four-page report diagnosing Euan's autism in clear and specific terms. He claims autistic children “don't have a father around to tell them don't act like a moron, you'll get nowhere in life.” Savage's own career path is a living refutation of that latter statement. “In 99 per cent of cases it's a brat who hasn't been told to cut the act out.” If we translate the self-consciously folksy rhetoric into proper English, he's saying that autistic children haven't been shown how to behave, when in fact there's a huge span of successful therapies devoted to exactly that issue.
Until yesterday I suspect most people in Britain hadn't heard of Michael Savage, and were much better off for it. Now, thanks to Jacqui Smith's needless grandstanding, I've absorbed far more of his subliterate bile than I ever wanted to hear. I almost wonder if I shouldn't sue the Government myself for causing me needless distress. Sure, I wouldn't invite Michael Savage into my living-room, but I don't see that as a reason to exclude him from the country. In fact, let him come over and reveal himself for what he is: an overgrown playground bully who gets his kicks from picking on those who can't fight back. Or, to put it another way: Come over here and say that, Mike. And if you haven't got the bottle, cut out the dumbass act.

An open book

2009-04-29T13:37:00.000-07:00

It's no exaggeration to say that reading has transformed Euan's world. In common with many autistic children, he took to books eagerly, quickly memorising the letter sounds, then combining them to form simple words which were soon supplemented by longer ones. Sometimes I see him visualising words in front of him, writing them in the air as he walks to school. He sees an object and his first thought is to spell it - "newspaper" earned a recent round of applause. But this eagerness has also brought a fundamental problem to the surface, a kind of semantic near-sightedness: Euan struggles to connect the symbol to the meaning.
On a basic level, this means that when reading a picture book, Euan will speed through the text, but fail to absorb the story. He points at the words rather than the items they signify. He likes words for their sound, which is why when his teacher asks him what he had for supper the previous night, he's likely to reply "sausages", even when he ate something else (what must his school make of our diet?). Other favourites are the Dutch words pompoen (pumpkin) and lieveheersbeestje (ladybird).
Is this, really, the underlying problem of autism - that the autistic person can't distinguish appearance from intent or follow chains of meaning (for example, "let's go to the shop" will often trigger a tantrum, but "put your shoes on and come to the shop" is usually accepted)? It might explain why we've had more success in communicating with Euan since we stopped using complex instructions that required him to fill in the blanks and stuck to the core components - so that instead of saying: "Euan, get ready for bed," we now say, "Euan, go upstairs and put your pyjamas on", followed by: "Euan, brush your teeth", "Euan, choose a book to read" and "Euan, get into bed". All of them separate, distinct, and in sequence. When we went to visit my parents in Norfolk last month, we went by train and emphasised the journey itself - which he could understand - rather than the destination, which would have been too vague and abstract in his mind (and ours - it was a seven-hour journey, after all). I produced a pictured book for him on the computer, showing the stages of the journey and what we would do on the way (have lunch, look at cows out of the window) and it helped him enjoy the journey rather than feel anxious at the strange new experience.
Whatever the reason, the written word has been an enabling tool for Euan - and for us. His sketchpad is the most important piece of equipment in our house: it's a learning accessory, a message board, a scheduling tool and a source of entertainment all at once. In the morning we write his school routine on it (breakfast, get dressed, CD, go to school), and at night he takes it to bed with him, writing out words from his books until he falls asleep. It's a literal world in every sense - and therein lies the challenge.

On Loyalty

2009-01-29T15:19:00.000-08:00

Last week I was lucky enough to be able to write about Euan for The Herald Magazine, the Glasgow-based newspaper supplement where I work (you can read the finished article here). As part of the exercise I interviewed Simon Baron-Cohen, and while talking to him I took the chance to ask him about a less obvious trait of autism that I'd recently found out about. His answers were enlightening and, in a way, heartening.
Let's start with a well-known drawback: autistic people have great difficulty making friends. Those with Asperger's syndrome, in particular, often experience extreme frustration and worse from their difficulties in forming social relationships. It can seem as if the real world is something that happens on the opposite side of a ravine: you can look and shout across, but unless someone is prepared to throw you a rope bridge, you have little hope of joining in.
And yet there's a lot of anecdotal evidence that autistic people make extremely good friends to those who can manage to put up with their anti-social quirks (which can be equally frustrating to the non-autistic friend). In short, they can be fiercely, almost intimidatingly loyal. Baron-Cohen put it this way: "A lot of people with autism figure out their own rules of morality and believe passionately in things being done correctly, and certainly don’t have any wish to harm other people. So they may well have figured out that the world can be divided into people who are good to you or people who are bad to you, and they want to be good to other people and expect the same back in return. So that notion of loyalty is simply because people with autism don’t typically engage in deception ... I think there’s a huge honesty in people with autism, and you could say that that’s not common in the wider social world."
So there you have it: part of autism is not "getting" the notion of lying; of deceiving others for your own advantage; of ingratiating oneself with people one secretly can't stand. It can make autistic people look blunt, rude and stand-offish; but it also reflects a desire to stay true to yourself and not to sacrifice your principles for short-term personal gain. Baron-Cohen likened it to the habit, common among autistic children, of taking toys and pens apart: "When you take a toy apart to try and understand how it works, you’re trying to get at the truth of the world: what is the truth of this object? When you interact with people you also expect that what they tell you should be true, and what you tell other people should be true. So I think there’s a strong focus on the truth and they don’t necessarily see the point in lies or not being genuine."
Looked at from that perspective, it begs the question: who's really disabled - The autistic child, or the neurotypical adult who's built a labyrinth of lies to excuse their behaviour?

Look and learn

2009-01-18T12:54:00.000-08:00

Euan is sitting at the breakfast table when he suddenly points out of the window, a confident grin on his face, and declares: "Look! A chimney!" I look and, sure enough, he's pointing at the roof of a house in the row behind ours.
Now, the chimney was there long before we moved into the house. Euan has sat in the same spot at the breakfast table on hundreds of occasions and looked out of the window. Yet until now he's never drawn attention to the chimney, though he must have seen it. So why the sudden interest?
We've had a new window on to Euan's thought processes recently: learning to read. As I mentioned in an earlier entry, he's taken to spelling out the names of things as he sees them. He'll find me cooking in the kitchen and point to the pan, saying: "p-a-n". Sometimes he'll even try to spell a word he's never seen written down (and, since he has the misfortune in this regard to be a native speaker of English, get bogged down in by the quicksand of non-phonetic spelling). One of his favourite books is a dictionary which contains a picture of a house, surrounded by smaller pictures labelling the different parts. Hence the sudden affinity for chimneys.
What this has revealed to us is that Euan is a highly visual learner, and, given the right stimuli, a remarkably quick one. He learned the alphabet by setting down the magnetic fridge letters on the table in sequence, from a to z, until he knew it by heart. He memorises books from cover to cover, first learning the story through the pictures, then going over the words again and again until he can read them fluently off the page. Sentences are still a challenge for him, but he has a genuine love of words.
When Euan was younger we thought he might have an aptitude for maths, since he was able to read off three-digit numbers from the age of three. But he's never progressed to doing calculations and it seems he just loves recognising and reading the symbols. As I'm generally wary of the myth that autistic people are closet geniuses, I was almost relieved to discover this. It's a faculty we've exploited to make shopping trips easier, by writing out visual shopping lists with pictures of all the items. This has created its own problems by exposing my meagre artistic ability: I'd never thought it could be so difficult to draw an orange. And, as with most things where Euan's concerned, it was a trial-and-error process: the first time I took him shopping with a list, he enthusiastically went round ticking off all the items. The next day I made a new list, but forgot to throw the previous day's list away. Euan found it and insisted on shopping with the list he knew, rather than the one I'd made up for that day. So we ended up taking both, and buying enough bread and milk to last us through a minor conflict.

To screen or not to screen?

2009-01-07T16:01:00.000-08:00

I've spent a large part of today talking to radio stations in response to Simon Baron-Cohen's adroitly seeded article on the BBC's website on the prospect of prenatal screenings for autism. It kicked off a lively debate, particularly on the BBC network, that reflects the wide public concern over the issues of autism and abortion.
Baron-Cohen raised the issue to allow time for a proper debate about the ethical implications of prenatal screening. He believes that testing is inevitable and will probably be available within a few years. One of his main concerns is that we might, through treatment or termination, sweep away brilliant scientific or mathematical minds in a misguided drive to eliminate the condition. In case I have misrepresented him, here are his actual words: "Caution is needed before scientists embrace prenatal testing so that we do not inadvertently repeat the history of eugenics or inadvertently 'cure' not just autism but the associated talents that are not in need of treatment."
I find the worry about eradicating the next generation of Einsteins to be the weak link in Baron-Cohen's argument. Very few autistic people possess that level of talent, though it is true that a disproportionate number of winners of science's major prizes register on the autism spectrum. However, if I may flip the whole debate on its head for a second, the hope that their child might be an artistic or mathematical genius is perhaps the worst possible reason for continuing an unwanted pregnancy. Autistic children are hugely demanding on their parents, regularly trigger family breakdown, and even the extremely high achievers often experience isolation, alienation, depression and impoverished emotional lives as adults. There is a tendency to romanticise the suffering of geniuses such as Mozart, Einstein and Van Gogh, as if their achievements somehow compensated for their personal problems. Any in-depth examination of their lives will show that this is far from the case.
Which brings us back to the delicate matter of abortion. The public debate has been concentrated on this question, in sometimes apocalyptic tones. There is a widespread fear that mass abortion would ensue, and out of this has come a conviction that prenatal testing should be resisted. I share Baron-Cohen's belief that testing is inevitable, as well as his concern that doctors might be too quick to recommend termination of an autistic foetus. But the idea that parents will automatically take the "easy way out" en masse seems to me to be hugely ill-founded. Babies are conceived in all kinds of circumstances, but as far as planned pregnancies go, it defies logic to assume that a couple who have spent months, perhaps years, making the decision to have a baby, considering its prospects, making space in their home and social lives, and maybe even reading several books on the subject, will suddenly take fright in this way. Being told your child is autistic is, initially, a bitter pill to swallow, but with time comes understanding of the condition and a realisation that, with the right support and therapy, even a severely autistic child can make enormous progress and offer its family the kind of rewards you don't get anywhere else.
My concern is not about whether these tests should exist, since it seems certain they will exist, and any attempt to force the government to reject them will only create an opening to be exploited by private clinics. And frankly, this is too big an issue to be left to the commercial market. The wider issue is about how the tests will work and how they should be applied. It will, necessarily, be a crude measure, and further testing will undoubtedly be needed after the child is born. Some autistic people spend their lives in institutions; others win Nobel prizes; I cannot imagine how a test in the womb could begin to distinguish between the two. Parents who choose to take the test ought to be advised on the full scope of the autism spectrum and the range of help and support available, preferably at the moment that the word autism is first pronounced by a doctor. To be told flatly: "Your child will be autistic" does not allow an informed choice. The initial shock needs to be absorbed and put in context.
There is no denying that some parents will take the test, see the result, and terminate a child they might otherwise have had. This is unavoidable. But it is not universal, as the experience of Down's syndrome testing has shown. And for those who choose to go ahead, knowing that their child is autistic at the earliest stage, having the chance to come to terms with it, and being put in touch with the network of autism support services, has to be a good thing. When I think back to the turbulent times Magteld and I went through in the build-up to Euan's diagnosis, I would have to be a very heartless person to wish that kind of experience on anybody else.
Ultimately, people will draw their own conclusions. Here are mine. Firstly, that prenatal screenings for autism, in some form, are inevitable, and that the debate about whether they are right or wrong is tangential to the issue. But when they do arrive, it is surely preferable to have them introduced through the regulated public health system than by private clinics. Secondly, that a lot of prospective parents are not impressionable simpletons who will dash to the abortion clinic at the slightest provocation, but conscientious people who have carefully weighed up the decision to have a child in the first place and should not have vital information withheld from them without good reason. Thirdly, that autistic people are special individuals who, given the right support, can achieve remarkable things, and who deserve our admiration whether that achievement turns out to be a Nobel prize or learning to buy their own groceries. And finally, that if the general population could learn to be more accommodating to people with autism and appreciate their talents, society would be a better place. We need our Einsteins, and they need us.

Unwrapping another layer

2008-12-27T04:46:00.000-08:00

Christmas can be a good measure of progress in children. This year Euan didn't want to open his presents. That was a step forward from last year, when he didn't want to be in the same room as them. The reason, with hindsight, was simple and a classic piece of autistic logic: we'd talked to Euan about Christmas lunch, cooked the turkey and set the table - and then gone into the living room to open presents. And in his mind he must have thought: they've promised me a slap-up feed, so why are they wasting time in the wrong room tearing paper off strange boxes?
This year Euan was happy to be among the boxes, but took no interest in them until someone else had taken off the wrapping. It was striking that his favourite presents were things already familiar to him: an Elefun game that one of his friends has, and a set of reading books he knows from school.
Euan's progress is erratic, unpredictable, alinear, but it is progress nonetheless. Every step along the way is a minor triumph. What's heartening is his determination to learn things that don't come naturally to him. When he started school it was unimaginable that he could do something as demanding as perform in a drama, yet last Tuesday he "sang his heart out" (Magteld's words) in the school nativity play chorus. In the first rehearsals Euan was distracted by the noise and struggled to follow the script, but as they practised more and the story became familiar, he became more comfortable. As it turned out, rehearsing a play over and over from start to finish played to his strengths: his remarkable memory and his ability to learn in sequences. The same faculty has helped him to learn the alphabet and to read books from cover to cover.
It also characterises his speech. Euan is getting better at asking for what he wants, but still can't really string a sentence together. Here's a conversation we had yesterday:
Euan: "I want some toast". (This is a good sentence, using 'some', an indeterminate quantity, in the right place. It's only in the last few months he's been doing this).
Me: "No, Euan, it's not time for toast. How about a roll?" I hold up the roll to show him.
Euan: "Yay! Roll! 'r', 'r'!" (rolling the r to show he's thinking of how to write the word).
Me: "What do you want on your roll? Cheese?"
Euan: "No, there's no cheese in the house. I need jam."
That last part needs a bit of decoding: what Euan actually meant was: 'I don't want cheese'. He's heard me say "There's no jam/cheese/peanut butter in the house" when we've run out of something, but it seems he understands it to simply mean a wrong choice. It's a classic piece of Euan-speak, taking a set phrase he's heard and trying to apply it, but not quite getting it right. (Using "need" to mean "want" is another example.) This way of using language in chunks makes it hard for him to string a sentence together or hold a conversation, but it still represents a giant leap forward and a huge effort on his part.

Paperwork

2008-12-06T13:12:00.000-08:00

A cause for minor celebration: after three months of anxiously waiting and fearing the worst on our part, Euan's Disability Living Allowance comes through. It's the end of an exhausting and nerve-racking process whose keytone has been to expect the worst.
The anecdotal evidence amounted to a slurry of arbitrary decisions, torturous panel hearings and questions that would have poleaxed the Sphinx. "Everybody gets knocked back first time" was a phrase that became as familiar as a patch of mould on the bathroom ceiling, and indeed, as we spoke to people, a pattern seemed to emerge: you fill in your application form, wait a few months, receive the rejection letter, appeal to the appeals panel, sit in a room facing a forbidding-looking triumvirate of grim-faced civil servants, sweat another few months, and eventually pull off an against-all-odds victory. So when we were told we would be exempted from this merry-go-round, the relief was palpable.
The first step is to fill in a 40-page form, which is so daunting and bafflingly worded it must put many people off right from the start. (If we found it confusing, how must it be for someone with a basic level of literacy, or whose English is rudimentary? Yet these are often the people who need the money most urgently.) We had invaluable help from our local autism support group, yet even so, it took four nights to complete the form - four exhausting nights when we wrote until words failed us and we slunk off to bed emotionally drained. At the very time when a chorus of experts and source books were encouraging us to focus on the positive aspects of Euan's diagnosis, to work to build a viable future for him and for ourselves, and to appreciate the child he is rather than mourn the child we never had, here was a form asking us to detail in bald terms the worst, most debilitating consequences of his autism. In short, to measure the unfathomable. It asked us to describe an "average day" - belying the fact that the problem with autistic children isn't the average days. The average days, when everything goes by the set routine, are fine. You can almost forget your child has a problem at all. The times when you need help are the days that break the routine: going away on holiday, visiting family, wearing a new pair of shoes, deviating from the normal shopping list in the supermarket, and so on. We were advised: "describe the worst day possible." It didn't quite go that far, but we did have to detail, in unsparing and unflinching terms, the severe effects that these breaks from the norm can trigger. So being told we would not have to reapply until Euan's 11th birthday was a double dose of relief.
It's not just about the money, though that does come as a comfort and will enable us to give Euan all kinds of support we would have struggled to fund by ourselves. DLA is also the most widely accepted official recognition that your child is disabled - a stamp of approval that opens other doors. If I were advising anyone else applying, based purely on my own experience, I'd say the following: include as much official paperwork as you can - your diagnosis report should be top of the pile, along with any assessments you have from educational psychologists and therapists - be honest but unflinching about your child's condition (in other words, don't be shy to spell it out), and be very, very patient. It worked for us.

A whole-life condition

2008-11-16T15:49:00.000-08:00

Two weeks ago I was invited by the National Autistic Society to attend a reception for people connected with autism at the City Chambers in Edinburgh (the prompt for this was my fundraising 10K run, which eventually raised £1,135 for the NAS, so thanks to all who donated). There I met other parents whose circumstances differed appreciably from our own; in particular two mothers whose children were now grown up. Two things came out of this: firstly, how thankful we have to be that we weren't having to steer Euan through childhood 20 years ago, when the prevailing mood in authority was to marginalise or deny the existence of autistic children; but also, counterbalancing that, a realisation that his development and prospects are largely out of our hands. And with it comes a numbing sense of helplessness that can be difficult to suppress.
It starts with the understanding that autism is not a condition children recover from. They may, with a little luck and years of application by themselves and their carers, learn to function in social circumstances, perhaps even live independently. But the odds are stacked against them. I learned of a young, intelligent man in his late 20s who lives in a Steiner community. In many ways it's an ideal scenario for him: he is free to come and go, has a job on site that keeps him occupied, and is able to indulge his obsession with books undisturbed. Every few weeks, boards the train to visit his parents - at which point somebody has to remind him to pack his toothbrush and pyjamas in with his books. He's happy, his parents are content, but they've taken a long and torturous road to get there.
Raising autistic children, in short, requires a wholesale readjustment of their prospects. Suddenly the future is not about which university to send them to, but about whether they'll ever be able to hold down a job. Or enjoy a relationship on equal terms. Or even leave the house. When Magteld and I decided to have children in our twenties, part of the reasoning was that we would still have plenty of good, healthy years to look forward to once they were grown up and independent. We looked forward to helping them decorate their first homes and meeting their partners. Now we need to face up to the very real prospect of Euan living with us until we're too old to care for him. And the idea of him having to be taken into a care home in his forties or fifties to live out the rest of his days is truly terrifying. Particularly when we look at him now, as an engaging, quirky, self-contained little boy with an infectious giggle who can absorb himself tirelessly in a story or the sequence of the alphabet, and realise that the matter of whether he'll ever adjust to society is largely out of our hands. At times like this, the future looms like a giant black hole.

The consolation of genius

2008-10-05T13:39:00.000-07:00

After a while, "spotting" autistics in the street, or among friends and colleagues, or on the television, becomes a kind of obsession in itself, a party game similar to the "who is a Jew" game I once read about. (It's not as sinister as it sounds: the writer was a Jewish-descended journalist who, on meeting other Jewish-descended journalists, liked to swap notes on celebrities whose Jewish background was mostly unknown. At the root of this ethnic Top Trumps was a kind of implicit community pride: see how our community has achieved so much that even we don't know the half of it).
Fictional characters are even better: since they can't be conclusively tested or diagnosed, the possibilities are limitless. My list includes Stephen Dedalus, Prez in The Wire, Alan Partridge and The Incredible Hulk (for his limited language skills, poor eye contact and raging tantrums).
As Paul Collins notes in his perceptive book Not Even Wrong, which I recommend to Autistic Dads (and Mums) everywhere, the names at the top of most people's lists are Isaac Newton and Einstein. Not far behind come the likes of Mozart, Vincent van Gogh and Andy Warhol. It's often the first thing you hear when you breach the subject of your child's condition: a sincere, well-meaning comment along the lines of "oh, but Mozart was autistic - you've probably got a genius on your hands." Yet as well-intentioned as this kind of statement is, it betrays two conceits: firstly, that exceptional talent, rather than happiness or social aptitude, is the highest ideal that parents can aspire to for their children; and secondly, that developmental disorders such as autism, or mental illness, can be offset against individual genius: that there is some consolation in genius, since it's the quality that is most likely to endure after death.
It's a hangover, though people would be horrified to acknowledge it, from the old Victorian Bedlam attitude to mental disorders. Display a "savant" ability and you would be indulged, often over-indulged, often at the cost of your own personal well-being; show none, and you were condemned to a life in the madhouse. Just consider the statistical implications and you soon realise that even among the autistic population, geniuses of world renown make up only a tiny proportion of the whole. Autism, by and large, has meant isolation, loneliness, a high chance of mental illness and, until recently, widespread institutionalisation. And let's not forget what being one of these feted genius entailed: Mozart drove himself into an early grave at 35, his obsessive work schedule at odds with his fragile health; Van Gogh suffered from paranoia and depression, and eventually shot himself, and Warhol's private and public demons are well documented.
I will leave the last word to Paul Collins: "There are Newtons of refridgerator parts, Newtons of painted light bulbs, Newtons of train schedules, Newtons of bits of string. Isaac Newton happened to be the Newton of Newtonian physics, and you cannot have him without having the others, too."

They're everywhere!

2008-09-23T00:37:00.000-07:00

While reading a review of a biography of the Scottish writer Alasdair Gray I was pulled up short by a remark from one of his former girlfriends. When her son fell ill with cancer, Gray offered no support; she summed up his attitude in the sentence: "It was almost as if he didn't understand what was happening." And almost involuntarily, I stopped reading the review and thought: "Is he...?"
Last week I was running around a local park in light rain when a woman came into the park with her son, who looked about 10, and her dog. The mother and dog went off for a walk through the park, the son sat down on a bench with a robot toy and played with it - oblivious to the rain, to the fact his mother had gone for a walk, or to me hurtling round and round the park like a man being chased by a giant wasp. Presently I saw him walking through the park, unperturbed, staring down at his feet, presumably off to meet up with his mother, looking for all the world as if this was the standard pattern for their days out. And I practically had to restrain myself from approaching the woman and saying: "So, is your child autistic too?"
Magteld and I were watching a news item about disruptive teenagers. It ran the gamut of journalistic cliches about children running wild, bunking school, hanging around on street corners looking vaguely menacing, keeping their hands in their pockets, wearing clothes that mark them out as teenagers and other such antisocial traits. At the end came an interview with a boy who was constantly causing trouble in his neighbourhood, alongside his despairing mother. The boy gave only fleeting glances to the interviewer and the camera, and struggled to find his words. And Magteld and I looked at each other and said: "Did you see that?"
I could easily add to this list of people I've observed who look somehow out of place: square pegs in the honeycomb of life. The fact is, all of a sudden I've started to see potentially autistic people everywhere I look: on television, in the place where I work, walking the streets. It's like viewing the world through infra-red goggles, or rotating a glass cube containing a disjointed bundle of sticks through 180 degrees to reveal a box-frame. There are hazards here: autism is a difficult condition that takes a team of specialists several weeks to diagnose. There are all sorts of reasons why an unruly teenager might act surly, or a famous writer might be self-absorbed, or a young boy might be more interested in his toys than his mother on a particular morning. A friend who also has an autistic son said to me at the weekend: "you can spot them." And while the autistic radar may not always be spot-on, there's no escaping the fact that autism has changed the way we look at the world for ever.

The nature of things

2008-09-10T15:54:00.000-07:00

Autism can be a maddeningly elusive condition. It is a disability, but it is not disabling in the easily categorised way that losing a limb is disabling, and as a result compensating for what is missing is far less straightforward than attaching a prosthetic arm or leg. In fact, much of the confusion exists because it can be hard to grasp exactly where the shortfall lies. Autistic people, as one therapist put it to me, "look normal", and sometimes act normal; they have learning difficulties, but they are not incapable of learning. (As an aside, I'm used to assuming that highly visible conditions such as Down's syndrome must attract unwanted attention, but lately I've learned of the opposite problem from parents who say: "if only people could see my child's disability, they wouldn't be so quick to judge his behaviour in public").
There is a mountain of literature on the nature of autism and I anticipate spending much of the next decade ploughing through it. For now I'm on the nursery slopes, flipping through Simon Baron-Cohen's slimline but illuminating Mindblindness. One notion in particular stood out: the concept of "skin-bags", first put forward by psychologist Alison Gopnitz. She speculates on how a "mindblind" person would experience a family dinner: "Imagine that the noisy skin-bags suddenly moved toward you, and their noises grew loud, and you had no idea why, no way of explaining them or predicting what they would do."
I should confess from the outset to having a preference for colourful images over hard, dry scientific reasoning. But the more I thought about the skin-bags theory, the more I started to reconcile it with Euan's behaviour. Put simply, I started to wonder if part of the problem was an inability to distinguish objects from people. It might help to explain why he can't understand that Adam doesn't like to play with him when he's tired; why he is terrified of dogs in the park, but happy to watch them on television; why he treats Magteld and me like climbing-frames, clambering over us when we're sitting on the sofa as if we're extensions of the furniture. Euan is constantly banging his fists against things: walls, the furniture, books and his parents - at first we put it down to boisterousness, but could it be he just wants to know what we sound like? He is fascinated by movement, watches running taps and CD player displays as avidly as he follows a film on television. He is adept at learning in sequences, which is perhaps why he is so much better at counting than at forming sentences. I'm starting to think that he finds the world a far more interesting place than I've given him credit for. The downside is it's a far more uncertain one, too, where the slightest deviation from routine can be overwhelming. Objects make sense; people often do not - this may be the hardest thing we have to teach Euan.

CITY OF STIRLING 10K

2008-09-03T03:56:00.000-07:00

A very short entry to say that on September 14 I will be running the City of Stirling 10K to raise money for the National Autistic Society. You can donate by clicking here.

First school days

2008-09-01T01:21:00.000-07:00

Two weeks ago Euan started school. It's a fraught time for any parent, but for us the usual run-of-the-mill nerves were magnified by fresh uncertainties. Not only had he been diagnosed as autistic, but the diagnosis had raised the very real prospect that he might fail altogether to cope with the school environment.
Luckily the local primary school in the area of Glasgow where we live has a good track record of handling children with autism, and the secondary school just up the road even has a specialist autism unit. So we were reassured he would be in good hands. During the school holidays Euan attended a specialist nursery where autistic children were prepared for the school routine: they were instructed to arrive every day with a school bag and a snack and encouraged to take part in different activities every day. Euan's report from this nursery suggested he was ready for school, but we knew that this was a pre-season friendly: the real challenges lay ahead.
The first of these was the uniform. Euan's school had reassured us that there would be no trouble if he refused to wear his school clothes, but we were determined that he should stand out as little as possible from the other children. It took the best part of an hour, and some wrestling moves that would have made the Undertaker blanch, to squeeze him into his uniform on the first day, but it turned out to be a watershed moment. The second day was a struggle again, but on day three Euan readily put on his uniform and then hung around by the front door, waiting impatiently to leave the house. The act of putting his uniform on seems to engage him in "school mode" and trigger a series of now-familiar routines: packing his bag, walking the 10 minutes up the road, lining up for class, waving bye-bye and shuffling happily into class.
What happens thereafter is, admittedly, a little cloudy. Euan will now and again sing a song he has learned in class, shows some fleeting interest in his homework (at least, the parts that involve singing and acting out physical routines) and says "I like the school" when asked, but meaningful conversation is impossible. He is supposed to have a specialist support worker with him in class, but somewhere along the line his paperwork has been lost in the system (a phrase I fear will echo through his childhood) and he has to make do with a general assistant. There are still question marks about his ability to understand, concentrate and follow instructions. But at the moment it's early days, and while it's still hard to know if he can manage with the discipline of school, he has already shown himself to be more adaptable than we could have believed a few months ago. The hard questions about Euan and the school system don't avail themselves of easy answers. We can only be patient.

After the quake

2008-08-11T13:25:00.000-07:00

In the weeks since Euan's diagnosis I have come to think of our family as akin to a city hit by an earthquake. In case the comparison seems disproportionate, I should make clear what I mean: autism was something we didn't anticipate and were unprepared for, something which ruptured the foundations of our family life and transformed its landscape utterly. Until we came to terms with the shock and dealt with its immediate aftermath, we would languish in grief and confusion. Of course, taking care of the aftermath didn't involve anything as harrowing as removing broken bodies from the rubble of buildings, but in a fundamental sense we had to accept that our lives had been changed for ever by an external force.
The emergence of Euan's autism was bound up with a period of turmoil in my own life and well-being. To invoke the quake metaphor again, it was only once we started to clear the debris that the connection became clear. At the time all I understood was that the life I had aspired to, the middle-class dream of a house, a marriage, a steady job and happy, healthy, smiling children, had turned sour. Instead we had a child we hardly understood, who frequently left us exasperated as trips to the shops or the park became a series of small battles for his attention. Euan learned how to operate the CD player, and then played his favourite CDs over and over again until he knew them by heart. Once he did he would spend large portions of the day standing in the kitchen singing to himself, only pausing to eat or go to bed.
Things came apart at the seams. When I wasn't feeling a failure as a father, I was querying Magteld's methods ceaselessly, first in my mind, and then to her face. She responded by becoming angry and withdrawn; weeks went by when we hardly spoke. I began to seek refuge in the office and regarded weekends as short, sharp prison sentences, to be endured rather than enjoyed. Everything I had once cherished, I now resented. I devised increasingly fanciful ways of escaping my straitened family circumstances, while Magteld's thoughts were occupied with plans to go back to Holland with the children and start a new life there. We stopped just short of splitting up; a generation ago, when autism was less readily acknowledged or understood, we certainly would have done. But the whole episode affected our relationship and our mental health in ways we once would have thought ourselves immune from.
Many cities, in rebuilding after an earthquake, reinvent themselves in spectacular ways. The catastrophic event forces them to confront the shortcomings in their civic life and gives them the impetus to undergo bold and ambitious regeneration schemes. Devastation is a catalyst for revival. I feel the same principle can work for families such as ours. Since we began to accept Euan suffers from a neurological disorder, and especially since he was diagnosed, we have begun to adjust to the new demands in our lives and been able to look to the future without being overwhelmed by fear. The aftershocks will be felt for some time yet, but the foundations are still in place. The challenge is to go back to the drawing board and build anew.

Grief

2008-07-30T01:19:00.000-07:00

I had prepared myself for most aspects of Euan's diagnosis, but not for the overwhelming sense of grief that followed it. It was a grief that had stalked Magteld and me throughout the diagnostic process, but for the most part we had shunned it like owners of an errant dog. Now, finally, it was out in the open and we had no option but to come to terms with it.
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

The verdict

2008-07-18T15:29:00.000-07:00

It felt for all the world like being given the results of an exam in a subject we knew nothing about. The three people sitting on the other side of the small, round table were all experts who had devoted their careers to the development of autistic children. Opposite them were Magteld and I, whose understanding of autism could best be described as hazy. Yet it was us who had been given the responsibility of raising an autistic child. All they could do was proffer advice.
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.

Diagnosis D-Day

2008-07-13T14:40:00.000-07:00

It's no accident that the last couple of entries have ended on a defiantly upbeat tone. Because tomorrow is the day that Euan begins the process of being formally diagnosed for autism. It has been the dominant event on the horizon for the last few weeks, ever since the date was confirmed by the local Community Autism Team. And although it's the event we've been impatiently waiting for ever since we first heard the word autism used in connection with Euan, the sense of dreaded anticipation has been oppressive. It's like waiting to sit an exam for which you can't prepare, but whose outcome you know will change your life for ever.

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.

New perspectives

2008-07-08T15:08:00.000-07:00

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.

The third generation

2008-06-30T14:22:00.001-07:00

"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

2008-06-22T13:43:00.000-07:00

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

2008-06-10T00:49:00.000-07:00

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.

Relief and reality

2008-05-11T14:41:00.001-07:00

Relief might sound like a strange response to the news that your child has a lifelong, potentially debilitating condition for which there is no cure. But that was exactly how Magteld and I reacted to the news. It was as if we had been fumbling around in a darkened room for four years and suddenly somebody had switched on the lights. We understood for the first time what we were dealing with.

There is widespread resistance among teachers and carers towards labelling people, particularly when it involves young children. The sentiment is well meant, and in the sense that it's a reaction towards the historic tendency to define people by their limitations rather than their capabilities it's well founded. But as Clare Sainsbury, who has Asperger's Syndrome, comments in her excellent book Martian in the Playground, "someone with undiagnosed Asperger's still has Asperger's" (the difference between autism and Asperger's is hazy, and most professionals seem to treat the two as different manifestations of the same condition). For us, a label wasn't a branding iron but a key to understanding Euan's behaviour.

When the nursery first raised the subject, autism was one of the first things that cropped up in our minds. We considered it, and dismissed it. We were aided in our denial by well-meaning friends and relatives who reassured us that Euan couldn't be autistic because he was obviously intelligent, or remarked that he was just a happy, self-sufficient little boy. Neither of these, as I now know, precludes autism.

As perverse as it sounds, it was easier to deny the truth and look for some deficiency in our child-raising techniques than to accept the reality of having to care for an autistic child. Magteld and I blamed ourselves and blamed each other; we tried to shake Euan out of his entrenched routines and his closed world, sometimes literally. We waited with growing impatience for his speech to catch up with other children of his age. We felt ashamed every time an adult spoke to Euan and he looked up at them blankly, or when we watched him at birthday parties, standing mutely at the side of the room or absorbing himself in the workings of the CD player while other children joined in pass the parcel. His interests became obsessions, sometimes built around intricate and meticulous routines, and any attempt to divert from them triggered a storm of protest. The plain truth is, we barely knew our own son.

When I say that autism is incurable, I don't mean in the sense that science and technology haven't quite round to overriding its effects, and it's just a matter of waiting. My belief is that autism is incurable because one cannot simply isolate and remove the autistic element from someone's neurological system. For an autistic person, autism is their system. It can be managed and alleviated, but never "cured". For this reason, having the right label is crucial to our chances of bringing up Euan successfully.

First reaction

2008-05-04T12:55:00.000-07:00

The first person to use the word autism in connection with Euan was his speech and language therapist. I will never forget driving to the clinic to pick him and Magteld up after his first session. Magteld came out clutching Euan in one hand and a blue folder in the other, wearing that special smile she reserves for awkward social occasions.
When she got into the car I saw the words "autistic spectrum disorder" on the cover of the folder. She told me later she had burst into tears when the therapist raised the possibility at the end of the one-hour session that Euan might be autistic. At the time, all I could feel was a numb sense of bewilderment.
What are the emotions that autism gives rise to in the family of an autistic child?
There is, first of all, an overriding sense of fear. A fear of not being able to cope. A fear of not knowing what to expect. A fear that your child might go through their whole lives as a kind of alien, unable to comprehend the basic social functions of life. A magnified fear of failure: think of the anxiety all parents have that they might not be up to the task of equipping their child for adulthood, and multiply it by 100. A fear that your child might never be able to live independently of you, and a fear that there might be no-one to look after them once you're gone. A fear, all in all, of the unknown, in your life and in theirs.
There is also grief - specifically, what Magteld calls grieving for the child we wanted Euan to be. When Euan was a baby, we looked forward to watching him thrive and flourish as he trod the familiar path of childhood: walking, talking, inquiring, challenging, reasoning, understanding. Then, somewhere in this process, things became stuck. We watched other children learn to talk, ask questions and hold conversations with their parents. We reassured ourselves that Euan was simply a "late developer"; that as a bilingual child (English and Dutch) he would catch up before long; that he was otherwise a bright boy, so it was surely only a matter of time. Being told he was autistic extinguished these hopes: what we thought was a slight kink in the course of his development had turned out to be a shift of direction towards a new and alien landscape. Before we could move forward with raising him as an autistic child, we first had to let go of all our expectations of how his childhood should progress. It is hard to overstate just what a seismic shift this is.
The fear and the grief had their by-products: anger, self-recrimination, helplessness and despair. There were times when it looked as if the cumulative effect would sink our marriage. But there was also relief at finally having a label for Euan's difficulties and a first substantial clue towards solving the puzzle.

The first signs

2008-04-27T10:16:00.000-07:00

The first signs of Euan's autism weren't confined to the nursery environment, but it was at nursery that they were most apparent. His interaction with adults and other children was minimal: he would play happily on his own with toys or books (the book corner was a favourite haunt) but it was almost impossible to engage him in group activity. When he was potty training he wouldn't tell anyone when he needed the toilet, so at first he wet himself like other children; but once he had mastered the mechanics of going to the cubicle, taking down his trousers and excreting, he would simply take himself off without announcement and return with just as little ceremony. The first anyone would know that he had been was when the next person went in and saw the evidence (unfortunately, washing his hands afterwards is still not an established part of the routine).
More seriously, when Euan was attacked by another child (a mercifully rare occurrence) he said nothing: he didn't even cry. It was only much later in the day that a member of staff spotted the large mark in his face – and, of course, Euan was unable to explain what had happened. The thought that your child is unable to defend themselves, either during or after the event, is a profoundly worrying one, particularly as they approach school age.
My wife, Magteld, and I denied the signs at home for a long time. The fiercely competitive sport that is bringing up small children does not easily admit the suggestion that your child might be in some way abnormal. I remember Euan at a birthday party at the age of two: while all the other children joined in a game of pass the parcel, Euan's interest was entirely taken up with watching the CD player that the music was playing on. On a visit to my parents a few months later, Euan became interested in watering cans: he took a can to the water butt in the courtyard, filled it up, then poured the water very carefully into an empty flower pot. He repeated this routine over and over again, seemingly absorbed in studying the flow of the water from the can into the pot.
Euan has taken an obsessive interest in numbers since he was very small. For his fourth birthday my parents bought him a blackboard. Once he had been shown how it worked, he picked up a chalk, handed it to me and said: “number one.” He showed no interest in watching people drawing or scribbling on the board, or doing it himself: the only thing he wanted was to see the numbers written in sequence, from 1 up to 99, which was as far as he could count. Or so I thought. The next time my parents were staying with us, Magteld and I got back from a shopping trip to find Euan effortlessly reading off three-digit numbers which his grandfather had written on the board.

2008-04-20T08:56:00.000-07:00

My name is Gordon Darroch. I am the father of two children.

About a year ago we began having our elder son, Euan, then approaching the age of four, assessed for difficulties in his social development. He has always been a quiet, self-contained boy, rarely aggressive or anxious, happy to play by himself but equally content in the company of other children. His intelligence was normal and he seemed to be thriving at the nursery he had been attending since he was 10 months old.

But now the manager was telling us he showed little interest in the other children: he would play alongside them, rather than with them; if the nurses managed to persuade him to join in a group activity, he would quickly drift away back into his own world. And he rarely spoke. It was as if he was enclosed in a bubble: he could look out, and others could see in, but actual contact was all but impossible.

“Are you worried about him?” I asked the manager.

“A wee bit,” she said. It was the fairest answer she could give.

So began the long, exhausting and still unfinished process of having Euan assessed for autism. Even now I hesitate to use the words “Euan is autistic” to people because an actual diagnosis is still some way off. But the odds are shortening. Every specialist who has seen him so far has observed autistic traits in his behaviour, but the difference between suspecting your child has autism and having it diagnosed are as wide as the autistic spectrum itself.

This is intended to be a blog about living with autism in the family. Unlike some, I am not particularly interested in trying to work out who or what might be to blame for my son’s condition or whether it could have been avoided. The irrevocable fact is, it exists, and my prime concern is to learn how to deal with it.

There is a danger, too, of becoming so consumed with Euan’s condition that we end up seeing the condition and not the child. It’s true, as people often say, that there are worse things that can happen: he is not terminally ill or severely handicapped; his intelligence seems to be unaffected; he does not have a shortened lifespan, which I think must be the hardest thing for a parent to face. But at the same time, there are a lot of popular misconceptions of autism that lead people to dismiss it as just a mild hindrance, like walking with a limp or learning with dyslexia.

Perhaps dyslexia offers the most meaningful parallel: a generation ago, whole swathes of children were labelled as stupid, lazy or ill-disciplined when a little understanding and assistance could have saved them from a lifetime of under-achievement. I hope that with the right intervention and support Euan will be able to enjoy an independent and fulfilling life, rather than being written off as weak-willed and socially inept, as such children once were.