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.
Wednesday, 17 February 2010
Friday, 18 December 2009
More on Adam
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.
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.
Wednesday, 2 December 2009
The thin line
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.
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
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
Wednesday, 11 November 2009
And then there were two
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.
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.
Subscribe to:
Posts (Atom)