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.
Saturday, 18 December 2010
Wednesday, 27 October 2010
Biting the silver bullet
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.
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.
Wednesday, 25 August 2010
The sense of self
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.
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.
Monday, 28 June 2010
Starting School
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.
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.
Wednesday, 26 May 2010
Gary McKinnon: A Plea For Reason
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.
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.
Wednesday, 21 April 2010
Stage Fright or Social Frustration?
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.
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.
Wednesday, 17 February 2010
Nursery Roulette
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.
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.
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