Yesterday morning, several people we knew stopped eating their Coco Pops when a disconcertingly familiar voice could be heard on Radio Four's 'Today' programme, talking about the late diagnosis of autism in children. It was my wife:
The interview was the result of a new campaign by the National Austic Society, which is trying to improve the appallingly long delays in diagnosing Autistic Spectrum Disorder (ASD). My wife was approached because our story was one of the worst examples that the NAS had come across.
I was quite shocked by this. I know several people with severely autistic children and nothing we have experienced can compare to the ordeal they have gone through. However, I was missing the point, which was about how long parents have to wait for their child's condition to be recognised.
In our son's case, a large part of his childhood has been lost thanks to the inexperience and prejudices of a few individuals in the Child and Adolescent Mental Health Services (CAHMS). In particular, I won't forget the following encounters:
* Being told that my son's rages (which included kicking a hole in the wall of his bedroom) and obsessive compulsive behaviour was simply the result of 'sibling rivalry' - a fit of pique at the arrival of his baby brother.
*The half-baked autism assessment where my son's understanding of metaphor would be tested with coloured cards: "I haven't got the actual cards and these are just black and white photocopies, but the object in this card's meant to be red..."
*The helpful advice that if my wife and I stopped worrying about our son and started relaxing and enjoying ourselves more, he'd also become less anxious. This was given at a time when my son's OCD rituals for each room in the house were so bad, he would spend hours on the upstairs landing, not knowing where to go.
*The person who said "I can tell just by looking that your son doesn't have autism."
*The individuals who recommended that we went on parenting courses or had family therapy, as our son's behaviour was clearly the result of something we were doing wrong.
In fairness to CAHMS, I know that they are underfunded and have to deal with some truly horrific cases, many of which have a higher priority than our own. I should also add that some of the professionals we met were truly wonderful, particularly during the last three years. I just wish that they had been more on the ball in the early years, for all our sakes.
If I suddenly found myself in a position of power, the first thing I would do would be to standardise the diagnostic criteria across the various health authorities, making the assessments more rigorous. I would also insist that all early years teachers had autism awareness training. Third, I would increase the CAHMS budget and recruit more nursing staff with autism training (I would rather have 25 nurses than 10 psychologists).
Spending more on mental health in the early years will, I've no doubt, save a fortune in the long term.
My wife found the interview mildly terrifying, but was delighted that autism expert Prof. Simon Baron-Cohen had agreed to take part. Our son is, thankfully, blissfully unaware that his story has now been heard by millions of people.
Sunday, August 30, 2015
Thursday, August 20, 2015
The Ghost in the Machine
A few days ago I received an email containing some of the data from my MRI scan in July. I was just expecting a picture of a brain, but instead I received something far more human:
Someone asked me what the zig-zaggy bits were. I explained that they enabled me to communicate telepathically with a man in New Zealand, called Colin.
I'm not sure what's happened to the hair. Perhaps it's not magnetic enough.
On a more sensible note, it's a rare privilege to be offered such an unsual perspective without having to endure the worry of a suspected illness. I thought I'd be repulsed by the physicality of seeing the ghost in the machine, but my brain seems to like looking at itself. It's a funny thing.
I've been thinking a lot about the brain recently, as I have started playing the piano again after a break of 30 years and it's extraordinary how many pieces of music have come back to me - not just the notes, but also the fingering. All of that information, lying dormant in a cluster of neurons.
The pieces I enjoy playing most are some arrangements by Bartok based on Slovakian folksongs. They're relatively simple pieces, written for children, but are a pleasure to play because they're quirky and unpredictable, with exotic harmonies.
Here's a 51-second clip of one of them. Needless to say, this isn't me playing. My version would be lento:
When not playing Bartok, I've been trying to get out as much as possible and make the most of what's left of the summer. Last week, I took my wife and sons out after dark to a remote car park in Ashdown Forest where, after checking that it wasn't full of people dogging, we watched the Perseid meteors light up the sky.
The first two meteors were tiny little flashes and we ooohed and ahhhed politely, feeling slightly disappointed, then suddenly a bright ball of fire streaked across the sky, leaving a trail of smoke in its wake, followed by a faint smell of gunpowder. At this point, my younger son buried his head in my lap and said that he was worried about being blinded.
I knew it was a mistake to let him watch The Day of the Triffids.
Later in the week we drove to Beachy Head, to watch the Eastbourne Airshow.
I'd never been to an airshow before and wasn't terribly impressed to see a solitary plane slowly ambling around Eastbourne. Neither were my boys, who complained that they were bored.
After half an hour, I went off to some bushes near the cliff edge to answer the call of nature and quickly looked around to check that the coast was clear. Suddenly, I heard a roar and a Vulcan bomber appeared right in front of me, emerging from underneath the cliffs. Sadly, I wasn't holding my camera at the time:
We had no idea that we were witnessing the Vulcan's final flight, but for many watching it must have been a bittersweet experience. The photo above doesn't do justice to the size and power of the Vulcan. Even my wife, who is the last person who would normally enjoy an airshow, thought that it was an incredible spectacle.
In other news, my book shed has a new addition to its menagerie of animals:
I found it wandering aimlessly at the bottom of a shelving unit. I think it might be a toadlet.
A man at a Finnish academic library recently returned an order to me because of a "possible microbial infection". He'd bought the 70-year-old book, which had been advertised as being in fair to good condition, for £6. To me, it just looked like a book that had been read a few times, but was still in pretty good shape.
What was he expecting for £6? Perhaps I should throw in a toad next time.
I'm not sure what's happened to the hair. Perhaps it's not magnetic enough.
On a more sensible note, it's a rare privilege to be offered such an unsual perspective without having to endure the worry of a suspected illness. I thought I'd be repulsed by the physicality of seeing the ghost in the machine, but my brain seems to like looking at itself. It's a funny thing.
I've been thinking a lot about the brain recently, as I have started playing the piano again after a break of 30 years and it's extraordinary how many pieces of music have come back to me - not just the notes, but also the fingering. All of that information, lying dormant in a cluster of neurons.
The pieces I enjoy playing most are some arrangements by Bartok based on Slovakian folksongs. They're relatively simple pieces, written for children, but are a pleasure to play because they're quirky and unpredictable, with exotic harmonies.
Here's a 51-second clip of one of them. Needless to say, this isn't me playing. My version would be lento:
When not playing Bartok, I've been trying to get out as much as possible and make the most of what's left of the summer. Last week, I took my wife and sons out after dark to a remote car park in Ashdown Forest where, after checking that it wasn't full of people dogging, we watched the Perseid meteors light up the sky.
The first two meteors were tiny little flashes and we ooohed and ahhhed politely, feeling slightly disappointed, then suddenly a bright ball of fire streaked across the sky, leaving a trail of smoke in its wake, followed by a faint smell of gunpowder. At this point, my younger son buried his head in my lap and said that he was worried about being blinded.
I knew it was a mistake to let him watch The Day of the Triffids.
Later in the week we drove to Beachy Head, to watch the Eastbourne Airshow.
After half an hour, I went off to some bushes near the cliff edge to answer the call of nature and quickly looked around to check that the coast was clear. Suddenly, I heard a roar and a Vulcan bomber appeared right in front of me, emerging from underneath the cliffs. Sadly, I wasn't holding my camera at the time:
In other news, my book shed has a new addition to its menagerie of animals:
A man at a Finnish academic library recently returned an order to me because of a "possible microbial infection". He'd bought the 70-year-old book, which had been advertised as being in fair to good condition, for £6. To me, it just looked like a book that had been read a few times, but was still in pretty good shape.
What was he expecting for £6? Perhaps I should throw in a toad next time.
Friday, August 14, 2015
Walter Leigh - the Eric Ravilious of Music?
Part of the appeal of Ravilious is, I think, the fact that he celebrates England in a manner that is free of bombast or sentimentality, finding beauty in the mundane and commonplace. It is an art that can only have been created by the generation who came of age after the First World War.
As many will know, Ravilious's life came to a premature end in 1942, when a plane he was travelling in as a war artist went missing off the coast of Iceland, on September 2nd.
Less well known is a death that took place ten weeks earlier, when a young composer called Walter Leigh was killed in action at Tobruk.
After Cambridge, Leigh travelled to Berlin and, like several of his contemporaries, studied with the German composer Hindemith. It was there that Leigh began to develop a style that mirrors Eric Ravilious in its clarity and restraint, eschewing melodrama in favour of a gentle, understated melancholy.
Here is Walter Leigh's greatest work, the exquisite Concertino for Harpsichord and Strings:
If you can't face hearing more than a couple of minutes, skip to 3:23 and try the sublime middle movement. Listening to this work is always a bittersweet experience, as I can't help wondering what Leigh would have gone on to write if he'd survived the War.
Another gorgeous piece that I find quietly heart-rending is the first movement of Leigh's 'Music for Strings':
But like Ravilious, Walter Leigh wasn't precious about his art and would happily write in a more populist style if the commission called for it.
Walter Leigh died at the age of 37. Unlike Eric Ravilious, he didn't leave a huge body of work behind and a projected symphony never progressed beyond the stage of rough sketches. But the chamber, piano and orchestral works that exist show a composer of exceptional gifts who, had he lived, would have become a major figure in British musical life.
Tuesday, August 04, 2015
A Week in Instagram
I woke up this morning with a one pound coin and a fifty pence piece stuck to my back. I've no idea how they got there, but I'm not complaining.
The last week has been spent trying to expose my older son to a daily dose of sunlight, so that his vitamin D levels improve. He already walks as if he has rickets, but I think that's just him. If I ask him to walk normally, he gets very cross.
Our first trip took us to Ashdown Forest - the place that inspired the Winnie-the-Pooh stories. By sheer chance, we parked only a few minutes' walk from the memorial to A.A.Milne and E.H.Shephard, carefully placed in a setting that recalls this famous line:
"Wherever they go, and whatever happens to them on the way, in that enchanted place on the top of the forest, a little boy and his Bear will always be playing."
The forest appeared to be deserted and for a brief moment, it felt as if we had entered a lost idyll, but the discovery of a rather large bra hanging from a tree quickly changed the mood:
The following day I explored Birling Gap at low tide, negotiating my way across hundreds of rocks covered in sharp periwinkles. After ten minutes, I realised that I was alone and wondered why most people were content to huddle together on a small stretch of beach, rather than seek out a deserted cove.
I walked along a wave cut platform, looking at the small rock pools that had formed in this transient, tidal environment, watching tiny wisps of fish nervously dart out of sight. As a boy, I could happily spend hours exploring the microcosm of a rock pool. As an adult, I find myself more preoccupied with thinking about what I should be feeling, and wondering why I'm not.
I find that a remote, empty beach quickly induces a sense of timelessness, as if I am the last human left at the end of the world. Is that a bit potty?
Sometimes the isolation can be therapeutic, providing a chance to see things in perspective without any distractions, but this time all I could think about was an annoying tune that had popped into my head:
"Didn't we have a lovely time, the day we went to Bangor..." Maddening.
On the way back, I took a rather average photo on my phone, which Instagram later transformed into something that vaguely resembles a magic lantern slide.
As I said in an earlier post, I have become a huge fan of Instagram. If you have an account, you'll find me listed as phil._.b (the dots and underscore are vital). Every photo in this post is from Instagram, apart from the bra.
I haven't quite worked out the Instagram etiquette yet, but I generally work on the rule that I'll show you mine if you show me yours.
In contrast to the stark isolation of the beach, I enjoyed a visit to a local village fete, in a place called Glynde:
Almost everything you could want was there: a Punch and Judy show, stalls selling bric a brac that would remain unsold, a tent with a tea urn and a selection of fruit cakes made by the ladies of the parish. Only the local vicar was missing, with the obligatory appeal to restore his organ.
Glynde is an idyllic village, seemingly frozen in time. Many of the cottages are, I'm told, owned by a local aristocrat and rented out. This may strike many as an absurd anachronism, but the reality is a village of beautifully maintained properties rented at affordable prices.
I think I'd rather have noblesse oblige than 'shareholder value'.
My favourite building is the blacksmith's, which is still a working forge:
Later that day, my wife and I went for dinner with some friends in Hove. As I walked across the station footbridge and looked below, my Instagram alarm button started ringing again:
I liked the symmetry of the trains and felt pleased with the shot, but am I now going to start seeing Instagram opportunities everywhere?
I blame my phone, which continues to exceed expectations. For example, when I saw a Ladybird resting on some berries yesterday, I assumed that a close-up would only be possible with a proper camera. Fortunately, the phone coped admirably:
In the pre-smartphone era, I wouldn't have had a camera with me on a short walk around the outskirts of Lewes. But now that I have a decent phone and an Instagram account, I'm learning to look with fresh eyes at the familiar:
This is an abandoned quarry. I love the contrast between the rocks and the primordial-looking ferns. It's a strange place and whenever I hear the swoop of wings in the distance, I almost expect to see a pterodactyl.
This is a rather odd picture because it looks as if it has been heavily manipulated, digitally, but in fact I've barely altered it. The field in the background is Landport Bottom - a place populated by dog walkers and nervous sheep. It's hard to believe that history was made here, 751 years ago.
From Landport Bottom, a wooded path leads to the top of an old chalk quarry. I never tire of the view of the Weald and the Ouse river, meandering into the distance:
In the evening, teenagers come up here, light camp fires and drink copious amounts of beer. So far, none of them have tumbled over the cliff in the dark, but I expect that there have been some near misses.
After doing so much walking, I will hopefully sleep soundly tonight. If I'm really lucky, I may wake up with another £1.50 stuck to my back.
The last week has been spent trying to expose my older son to a daily dose of sunlight, so that his vitamin D levels improve. He already walks as if he has rickets, but I think that's just him. If I ask him to walk normally, he gets very cross.
Our first trip took us to Ashdown Forest - the place that inspired the Winnie-the-Pooh stories. By sheer chance, we parked only a few minutes' walk from the memorial to A.A.Milne and E.H.Shephard, carefully placed in a setting that recalls this famous line:
"Wherever they go, and whatever happens to them on the way, in that enchanted place on the top of the forest, a little boy and his Bear will always be playing."
Did the bra's owner have to leave in a hurry, or was she suffering from some form of post-coital amnesia?
Sadly, I think I've got to the age where I'm more interested in unusual trees than abandoned underwear. I particularly liked this tree, which had a bark that reminded me of The Thing in the Fantastic Four:
Sadly, I think I've got to the age where I'm more interested in unusual trees than abandoned underwear. I particularly liked this tree, which had a bark that reminded me of The Thing in the Fantastic Four:
I find that a remote, empty beach quickly induces a sense of timelessness, as if I am the last human left at the end of the world. Is that a bit potty?
Sometimes the isolation can be therapeutic, providing a chance to see things in perspective without any distractions, but this time all I could think about was an annoying tune that had popped into my head:
"Didn't we have a lovely time, the day we went to Bangor..." Maddening.
As I said in an earlier post, I have become a huge fan of Instagram. If you have an account, you'll find me listed as phil._.b (the dots and underscore are vital). Every photo in this post is from Instagram, apart from the bra.
I haven't quite worked out the Instagram etiquette yet, but I generally work on the rule that I'll show you mine if you show me yours.
In contrast to the stark isolation of the beach, I enjoyed a visit to a local village fete, in a place called Glynde:
Glynde is an idyllic village, seemingly frozen in time. Many of the cottages are, I'm told, owned by a local aristocrat and rented out. This may strike many as an absurd anachronism, but the reality is a village of beautifully maintained properties rented at affordable prices.
I think I'd rather have noblesse oblige than 'shareholder value'.
My favourite building is the blacksmith's, which is still a working forge:
I blame my phone, which continues to exceed expectations. For example, when I saw a Ladybird resting on some berries yesterday, I assumed that a close-up would only be possible with a proper camera. Fortunately, the phone coped admirably:
From Landport Bottom, a wooded path leads to the top of an old chalk quarry. I never tire of the view of the Weald and the Ouse river, meandering into the distance:
After doing so much walking, I will hopefully sleep soundly tonight. If I'm really lucky, I may wake up with another £1.50 stuck to my back.