What I’m reading: tales of the 60s, autism, trees, boarding-school, film stars… and more

IMG_2120

This is what I’ve been reading so far this year… The 60s novels are research for the book I’m writing at the moment – The Millstone (about single motherhood – the queues in doctor’s waiting rooms haven’t changed…) and Girls in their Married Bliss (woman friends, dodgy/awful men, funny and heartbreaking) – my first time reading Margaret Drabble and Edna O’Brien, appetite whetters both.

I’d already read the Vadim and Robert Evans autobiographies, Bardot, Deneuve, Fonda and The Kid Stays in the Picture; they’re in there for 60s research too. And for the Bob Evans line, ‘fool me once – more fool me, fool me twice – more fool you’, which I love but which is weirdly, tongue-twisterishly hard to get right. And for the scene in Vadim’s memoir where his three ex-wives, Brigitte Bardot, Annette Stroyberg and Jane Fonda, plus his ex-lover Catherine Deneuve, all end up by coincidence gathered round looking down at him on set in Paris when he’s floored by a broken shoulder.

Back in February I chaired an event with Jem Lester (Shtum) and Monica Wood (One in a Million Boy) at Dulwich Books – the proof copies of their novels are in the pile. Shtum is a gutsy, gutty, honest and tender portrayal of a single dad’s relationship with his non-verbal autistic son. The red spine is Monica Wood’s heartwarming and quirky One in a Million Boy, about a deadbeat(ish) dad, a superb old lady and a lost boy.

This is Paradise by Will Eaves (who is also a poet) is a finely observed study of a family falling apart and coming (more or less) together. I love a teen boarding-school story, and Friendly Fire is Patrick Gale’s, illustrated by his husband Aidan Hicks (fans of Curtis Sittenfeld’s Prep, Charlotte Mendelson’s Almost English and Antonia White’s Frost in May – enjoy). Ali Shaw’s The Trees is a magical account of a quest through a world changed overnight; Patricia Duncker’s Hallucinating Foucault is an unnerving tale of literary obsession which grips like a thriller and convinces like the truth.

My proof of Maggie O’Farrell’s time-and-space-hopping love story This Must Be The Place, which features a film star heroine turned recluse, would be in the picture, but I lent it to a friend so it’s represented by the invitation to the launch do on top of the pile. Many memorable scenes, including an agonising one with a father and son waiting out a crisis in a dermatology clinic that I will forever think of in association with eczema. Also: brilliant 90s wedding.

IMG_2121

Right now, I’m reading Steve Silberman’s NeuroTribes. It’s a big, brilliant, sometimes devastating and ultimately uplifting social history of autism. Much of it is shocking – here’s a glimpse of the chapter on ‘The Invention of Toxic Parenting’ (the theory that autism was caused by bad parents).

IMG_2125It’s making me very grateful to be the parent of an autistic child here and now… I defy anyone to come to the end of the chapter on ‘What Sister Viktorine knew’ without a lump in the throat.

Beautiful games: my autistic son at play

IMG_0773When he was younger, he’d line up rows of straws and twiddle them in turn between his hands; now he loves nothing more than to have his toys taken apart (or dismantle them himself) and see what’s inside. Sometimes he even puts them back together.

IMG_1041Over the years, my son Tom, who has autism and is now eight, has gone through different phases with his toys, like any child. He’s always been fond of things that light up and he likes squidgy sensory toys and mechanical toys – things with wind-up mechanisms or motors and axles and cogs. I never would have thought that he’d learn to comment on whether toy cars are pull-back or friction-powered – but he does.

IMG_0758Some things he was once terrified of now fascinate him, such as fans and bubble machines. He also likes to arrange his toys or their constituent parts – maybe it’s a fond maternal eye, but I do love to see these arrangements. It seems to me that sometimes there’s an artistic (or scientific? Or both?) sensitivity and precision to them. Sometimes, though, it all turns into a crazy tangle! I thought I’d put together some of the pictures I’ve taken of his games down the years.

Sometimes he pimps his toys, like these creations – wheels and axles from one kind of toy, bodies from something else.

IMG_1126

Here he is with another creation – a spinner.

IMG_1188

Lining things up is good, especially with the help of a suitable wall.

IMG_1038
IMG_1046
The line below is of robot vacuum cleaners. Or he was pretending they were, anyway.

my autistic son's toys

Not sure what these sensory animal toys make of the morass of other stuff they’re warily eyeing up.

IMG_1195

Sometimes, it all just gets a bit chaotic…

IMG_1225orig

But sometimes, the effect is rather magical.

autistic son's light-up toys

light-up toys
Soft toys do have their place, too. Well, Blue Bear, Tom’s autism awareness bear, definitely does.

my son with his Autism Awareness bear
The very favourite toy of all is the ipad. When it got broken once, it was necessary to make do with this substitute while it was mended…

IMG_3449
Insides of things are sometimes just as important and interesting as outsides.

IMG_0781
IMG_0786
Sometimes it is essential for alien eggs to live on the kitchen table for a while…

IMG_0076

Other times, the best thing is being outside

IMG_0382
checking out nature

138
or going somewhere new

IMG_0547like maybe the seaside

IMG_0899

and exploring it with people you love.

IMG_0576

Why I love Cornwall

IMG_0895

My abiding memory of my first trip to Cornwall, aged four, is of walking back from the beach in an odd assortment of clothes and no knickers. I’d been swept out to sea; well, that was my impression of the experience, but really, I’d been knocked off my feet by a wave. Everyone I was with donated something for me to put on, but underwear I had to do without.

IMG_0899

My seven-year-old son, who has autism, had a similar wardrobe crisis recently following a too-close encounter with the sea. This was at St Ives, and it was beautiful – the sea and the sky were an extraordinary translucent blue (half-an-hour later, the mist rolled in and it all vanished). We were just about to leave when he fell over on the wet sand and soaked his top and trousers. A rescue party scaled the cliffs in search of a new outfit from a charity shop, duly returning with a surfer-dude shorts and hoodie look; in the meantime, he circled the sand in his anorak and a pair of slightly damp, and therefore transparent, white pants.

IMG_0900

I’m told that the Anglo-Saxons regarded today, the 7th November, as the beginning of winter. It’s been so windy and foggy and murky in Oxfordshire over the last few days, it’s hard to believe that not so long ago the children really were paddling in the sea.

Our half-term trip to Cornwall was the very first family holiday the four of us have ever had. Given my son’s autism, a holiday has always seemed more likely to be an ordeal than a treat. So it was the most amazing feeling to look out of the train window and see an alien landscape – rugged, with unfamiliar trees and a haze of mist being sucked up towards the sun. The mist cleared as we approached Penzance and we saw the sea. The light was unmistakably different to home – more vivid: it was as if we’d stepped out of a Constable or a Reynolds and into a Cezanne.

IMG_0887

We stayed in the family room at the youth hostel in Penzance – run by lovely people (the breakfast is very good too). But our stay was really made special by friends who live nearby and who took care of us, showing us round, feeding us and providing our boy with the perfect sofa for his afternoon nap.

IMG_0862

And now I’ve finally been to St Ives! Years ago, when I was a rookie reporter, I went to a Sunday afternoon cake and gin party where a Canadian artist told us she’d gone on her own to St Ives by train – perhaps as a cure for a broken heart, or maybe just to dispel the blues. I’ve wanted to go there myself ever since. I wasn’t sure what our son would make of  Tate St Ives, but actually he really loved the kids’ activities – lots of torches and lenses to play with.

Last time I went to Cornwall was for the July 1999 solar eclipse (ultimately an eerie experience – I won’t forget the strange cold rush of wind along the grass when the sun went dark). That was the trip that inspired the visits to Cornwall in my first novel, Stop the Clock. I still have, somewhere, the Perranporth Yard of Ale award I won on a previous Cornish holiday, in 1991.

???????????????????????????????

Still on my Cornwall hitlist: Mousehole, the Eden Project, Lands’ End, the North Cornwall Book Festival (I hoped to make it this time round but it was too much to fit in), and much more… I’m also sorry I didn’t make it to the Edge of the World bookshop in Penzance and St Ives Bookseller – maybe next time!

To wind up with a mini-listicle, here are some Cornwall-set novels I’ve read and loved down the years:

Notes from an Exhibition by Patrick Gale, which is set mainly in Penzance. I read this recently and came away with the feeling that I’d been somewhere full of light.

notes

The Camomile Lawn by Mary Wesley. One of the many things I love about this book is that Calypso marries for money and then falls in love, and firmly refuses to come to a bad end. I’m also a big fan of Patrick Marnham’s biography of Mary Wesley, Wild Mary – recommended reading for writers, especially women writers, along with Hermione Lee’s life of Penelope Fitzgerald, which I took with me on my most recent trip to Cornwall and will be very sorry to finish. Though I am also very happy to have got to the bit of the story where, late in life, she wins through to find a wide and admiring readership.

Out of various Daphne du Maurier possibilities – Frenchman’s Creek.

The first few Poldark novels. They’re adapting them for telly again, so the books are set to have a second lease of life. I did feel for Demelza, battling it out against Elizabeth, the perfect, unobtainable first love.

Susan Howatch’s Penmarric. I read this as a teenager and it made a big impression, prompting me to attempt a family saga of my own. My opening line, written from the point of view of the hapless Casanova heir of the country estate, was: ‘I made the same mistake with Clara that I have made with every other woman in my life: first I fell in love with her, and then I fell in love with somebody else.’ I never finished it.

If anyone has any other recommendations for Cornwall reading or places to go, let me know!

IMG_0826
my Books Are My Bag bag came too, along with my son’s autism awareness bear and Hermione Lee’s life of Penelope Fitzgerald

IMG_0394

Steve Shirley on autism, the Kindertransport, and the most loving thing a parent can do

‘I was five when my world fell apart,’ Dame Stephanie Shirley (also known as Steve Shirley) told a packed audience at Henley Literary Festival last week. Later to become a pioneering IT entrepreneur and philanthropist, she grew up in Germany in the 1930s, the child of a Jewish father and a Gentile mother. Now 81, she attributes her drive to succeed and her need to give something back to survivor’s guilt – to having escaped and lived when a million other children died in the Holocaust.

Steve Shirley's autobiography
Steve Shirley’s autobiography

The family moved round Europe in search of safety as Nazism took hold, eventually settling in Vienna, where Steve’s older sister had a kind teacher who would let her leave early so that the other children would not throw stones at her as she made her way home. Then their parents heard about the Kindertransport, the organisation that saved the lives of 10,000 Jewish children by transporting them to safety.

‘It looked as if Europe was going to descend into barbarity,’ Steve explained, ‘and my parents did a very brave thing.’ They decided to part with Steve and her sister, who came to England: ‘Most of the families ended up in England because very few countries would open their doors to us.’

The children were taken in by a couple they came to refer to as Auntie and Uncle, who paid £50 – the equivalent of £10,000 in today’s money – for each child in order to be allowed to offer them a home. Once they had learned enough English, both girls were sent to school, where they did very well. Steve was so good at maths she was eventually sent to lessons at a boys’ school so that she could benefit from the more expert teaching available there.

Steve’s sister went to university and later emigrated to Australia, where she had a successful career as a social worker supporting children who had been through traumatic experiences. Steve did not go on to higher education on leaving school, however, instead deciding to find a job and start earning, and later obtaining a degree through six years’ worth of night classes. She married, but was absolutely determined to carry on working, and went on to set up a company that employed women with children, working from home, as computer programmers – 55 years ago.

‘People asked me why I should want to go on working,’ Steve said. ‘I felt passionately that I should be independent.’ That was when she decided to use a different name – Stephanie Shirley being doubly feminine, she started to sign her correspondence to potential clients as Steve Shirley. And then she started getting meetings, and the business took off.

Steve was inspired by the John Lewis model in setting up her company, and sought to give employees a stake in its success. When the venture was eventually sold, she had created no fewer than 70 millionaires – as well as undreamed-of wealth for herself, much of which she has given away to good causes.

She has set up a number of charities, including Autistica, which funds medical research into the causes of autism, a residential school for children with autism and a home for adults with autism. She has a personal reason for all this work related to autism; her only child, a son, was severely affected by the condition.

The boy who never spoke again

‘He started off as the most beautiful baby. He was lovely, and then at two and a half, like a changeling in a fairy story, he grew into a wild, unmanageable toddler. It wasn’t just the terrible twos. He was autistic. He lost what little speech he had, and never spoke again.’

At this point, there was an audible gasp of shock and sympathy from the audience, which made me wonder if some of those present had perhaps not heard before that such a thing can happen. Steve was describing a terrible experience, but not an isolated one; I have heard of autism manifesting itself in the same way with other children, though it was not the case with my son. The concept that a child who is apparently developing normally can suddenly go into reverse and become non-verbal again is a frightening one, but for many families it is daily reality and the consequences are lifelong.

Steve’s son was classed as ineducable, which used to be the standard response to a diagnosis of autism – much has changed, thanks in large part to the efforts of parents like Steve. However, Steve managed to find a school that would take him, and he was transported there by ambulance on a Monday and brought back the same way on a Friday.

She kept on working, and throwing herself into work offered her some respite from worrying about her son: ‘The only time I forgot my child was when I was working; I’m a workaholic.’ He became increasingly violent and difficult to control, and in due course had to be cared for in an institution: ‘It was a horrendous period and I ended up having a breakdown.’

After she had recovered, she began to think about how she could move beyond her own family’s problems to help others facing similar difficulties. ‘I wanted to make a difference to other families.’ She said she felt that she had made more of a difference with regards to autism than in the field of computing.

Looking back to her parents’ decision to put her and her sister on the Kindertransport, she described it as ‘the most loving thing a parent can do, to let children go to safety – though as children we experienced it as rejection.’ (Steve and her sister were subsequently reunited with their parents, but were never really able to bond with them following their separation.)

‘The most loving thing a parent can do.’ This is a phrase Steve echoed when describing, with great compassion, the pain of parents of children with autism who have reached the decision that a residential school is the best place for them.

‘When I see parents who let their children go to a residential school, I see them in tears, it’s the most loving thing a parent can do. The children need specialist training, and the pressures on the family are much too much to do any more than to contain the situation.’

Perhaps this is true of every kind of love; love is at its most powerful when it is at its most selfless, when giving something up to save the beloved. And sometimes that means letting go.

Margot Harris: ‘Change is the only constant in life’

Margot Harris' autobiography
Margot Harris’ autobiography

I first heard of Steve Shirley from a colleague who had interviewed her, and thought I would be particularly interested in her story because I, too, have a son who has autism. So when I saw that she was due to speak at Henley Literary Festival as part of a joint event with Margot Harris, who was born to a Jewish family in Germany in 1930 and also escaped to England, I knew I had to take up the chance to go along and listen.

Sitting in the serene surroundings of Henley Town Hall on a fine autumn morning, listening to these two remarkable women recall the horrific events of their childhoods, I found myself very close to tears. Margot Hemming, who still practises as a therapist – a career which she entered relatively late in life – described how she and her family hid from looters on Kristallnacht: ‘It was a mob. We lived over a menswear shop – I was one of five children – and I was upstairs and it was dark when we heard people come in looting. We all kept quiet.’

The looters didn’t realise that there was anybody upstairs and they survived the night unharmed, but later her father was taken away to Buchenwald concentration camp. The family’s solicitor successfully argued that he should be released in order to wind up his business, but was subsequently sent to a concentration camp himself. An uncle who lived in Paris managed to get the family out to England; they were meant to leave everything behind, but Margot’s parents hid some of her mother’s jewellery in little boxes which they managed to smuggle out, giving it to the children to take out to the corridor of the train when the Gestapo came by.

The family lived in the East End of London, survived the Blitz and moved to the US after the war, where Margot enjoyed a lot of parties before settling down to married life back in England, later going on to train as a therapist. Both she and Steve agreed that they could not bear to look back at news clips of the events of their childhoods, and listening to them both remembering that history from the perspective of a lifetime later, I was struck by the extreme poles of human behaviour that their formative experiences had exposed them to: the looters and the rescuers, the kind teacher and the children throwing stones.

I loved hearing both women talk about their work – especially as neither of them intend to stop any time soon. Margot said she believed it was essential to always have a project for the future, just as it was necessary to accept that change is the only constant in life. (This was a point that Steve made too: ‘Tomorrow will not always resemble today’.)

I’ve come across this strongly positive attitude to work on other occasions when I’ve met women of their generation: a straightforward, unambivalent belief that it is a good thing for a woman to have a job, one that she finds interesting if at all possible, and that she should not have to abandon it for family life, though this was an expectation and, in many careers, a requirement in the post-war years, when a woman married.

Steve observed, ‘A woman can do anything she wants these days. I remember when it was not possible for a woman to open a bank account; all those legal barriers have gone – it’s the cultural barriers that remain. We have to make sure we recognise that, and talk to men about it, and have an environment that is inclusive for people from all sorts of backgrounds.’

Steve’s comments about how her work gave her some respite from the difficulties and worries of having a child with autism chime with my own experience, and I think it is also true, or potentially true, for many other parents in the same situation. So much excellent work has been done in schools, but it seems to me that there’s still a desperate need for more suitable childcare for children with autism; their parents want to be able to both look after their families and work, as other mothers and fathers do, but this can be almost impossible without the right support.

I was very glad to have had the opportunity to hear Steve and Margot speak – it was genuinely inspiring to hear how they had survived and gone on to live such purposeful and creative lives; and it was very moving to hear them speak with such clarity about the past, and with so much optimism for the future. I shall treasure my signed copies of their books!

More blog posts about autism

Autism, parenting, Far from the Tree and a wishlist

my son with his Autism Awareness bear
my son with his Autism Awareness bear

Today I read the chapter on autism in Andrew Solomon’s excellent book Far from the Tree, which is an insightful and often harrowing study of families where parents have children who are very different to themselves. I take my hat off to Andrew Solomon for his handling of the subject of autism, which can be a minefield. His approach struck me as both sensible and sensitive, and I turned down the corner of the page at this bit:

We need respite care, and free and satisfactory residential placements; we need positive narratives of autism that free parents from the compulsion to eliminate the syndrome…

Here are a few more points for the list:

Suitable education.  From what I’ve heard from other parents, schools in the UK vary wildly in how accommodating they are to children with autism. A school that’s willing to adapt and be flexible can make all the difference between your child managing to cope and being excluded, and if he or she is excluded, don’t expect an appropriate full-time place elsewhere to be offered any time soon. That’s why I support Ambitious about Autism’s Ruled Out campaign.

Even at best, a mainstream primary school is a tough environment for a child with autism, who may well be acutely sensitive to noise and find the playground an overwhelming mass of undecipherable social signals. If I spend time at my kids’ school, I come home wondering how the staff do it day in, day out. It’s pretty full on. For my son it must be a cross between earsplitting disco, exam nightmare and seven-course banquet with very confusing cutlery, unfamiliar food, and fellow guests who speak a host of different languages and have unguessable cultural expectations. By which I mean to say, a social and sensory challenge.

my autistic son's toys
current favourite toys: the robot vacuum cleaners

Prompt diagnosis. Even if everything points towards a diagnosis of autism, it takes time, simply because of the pressure on services. The unit where my son was diagnosed in 2010 saw four children a week. There has been an exponential increase in diagnoses of children with autism in Oxfordshire in recent years, which can only mean a lot of parents waiting… And diagnosis is the key to accessing the right support.

Last summer, I went on a course for parents of children with autism and their carers, run by the National Autistic Society – I’d been on the waiting list for two years, which tells you something about the level of need.

Childcare. If you want to help children with autism and their families, one way to do it is to support mothers of autistic children who want to work.

Here are some statistics, via the Papworth Trust:

  • 84% of mothers of disabled children are not working compared with 39% of mothers of non-disabled children. Only 3% of mothers of disabled children work full time and 13% work part time.
  • The average income of families with disabled children is £15,270, 23.5% below the UK mean income of £19,968, and 21.8% have incomes that are less than half the UK mean.
  • And, from a 2001 report compiled for the all-party parliamentary group on autism, ‘Employment has been found to have considerable psychological benefits for carers…’

Shout out due here to Guideposts Trust, which runs the holiday club my son attends.

Back to Andrew Solomon’s Far from the Tree:

Parents of autistic children are often sleep-deprived. They are frequently impoverished by the cost of care. They are overwhelmed by the unrelenting needs of children who often require constant supervision. They may be divorced and isolated. They may spend endless hours fighting their insurance and health providers and the local education authority that determines what services their child will get. They may forfeit their jobs because they miss so many days to deal with crises…

Is autism on the increase?

According to Far from the Tree, the US Department of Education says that autism is growing at a rate of 10 to 17 per cent per year. Andrew Solomon has these eminently reasonable points to make on the subject:

Part of the upsurge has to do with the broadening of categories: people who might once have been classed as schizotypal or mentally retarded are now on the spectrum, as are some who would once have been thought odd but not given a diagnosis.

If you attach better services to a diagnostic category, some doctors will apply that diagnosis to children for whom it is not entirely appropriate in order to access those services.

But also:

Is autism itself also on the rise? Inconceivable time and energy have been poured into this question, and no consensus has emerged, but it seems reasonable to conclude that both diagnosis and incidence have increased. During the decade that I spent working on this book, people would hear my list of chapters and then offer to introduce me to friends who were dealing with autism at least ten times as often as they would offer introductions to people with any of the other conditions. NIMH director Thomas Insel recounted a time during the 1970s when an autistic child was admitted to Boston Children’s Hospital; the chief of service called the residents together to observe him, reasoning that they might never see an autistic child again. On Insel’s own street today, which has nine houses, two children have autism.

The deepest riddle

One of the stories Solomon recounts is about Portia Iversen and her son Dov Shestack. When Dov was nine, Portia realised he could read, which came as a shock: ‘You don’t think they can read when you don’t know they can think.’

When she understood that he could express himself, she asked him what he’d been doing all these years. ‘Listening,’ he said.

Portia Iversen has investigated the deepest riddle of autism: the relationship between what can be observed and what is going on inside autistic people.

This observation caught my eye, too:

Medicine has been too eager in many cases to dismiss parents’ insight. August Bier, a physician practising in the early twentieth century, said, ‘A smart mother often makes a better diagnosis than a poor doctor.’

autistic son's light-up toys
a few of my autistic son’s favourite things…

What helps?

We were lucky enough to receive some good advice from the clinical psychologist who diagnosed our son. These points have stayed with me:

  • Much of the advice given to parents on how to connect with children with autism boils down to this – copy what they’re doing, join in with it, get down on the floor and play with them in the way they play. You don’t have to do it for hours on end – maybe just try 10 minutes a day.

This makes sense, if you think about it. If you’re trying to start a conversation with someone you don’t know, you don’t kick off by insisting they do things your way; you try to tune in to what’s going on with them.

  • You might as well give fish oil a go.

This is a pretty old-fashioned remedy, right? Like cod-liver oil. We give our son that Eye Q stuff – you can buy it in the supermarket, or online. He doesn’t like it off the spoon, so we put it in his morning juice. (Please, nobody tell me that’s wrong, for some reason.) I don’t know for sure that it helps – but it seems benign. Something that definitely did make a difference was a course of iron medicine; when he had the outpatient appointment that preceded his multi-disciplinary assessment and diagnosis, a blood test revealed that he was anaemic. Sorting that out lead to a big improvement in his behaviour.

The clinical psychologist also did me the service of telling me in no uncertain terms that Tom’s autism wasn’t my fault. Most mothers of children whose development is delayed probably ask themselves at some point if it’s because of something they’ve done. Back in the bad old days, when it was held that autism was caused by ‘refrigerator mothers’, this, my worst fear, would almost certainly have been confirmed rather than refuted by the medical experts.

It doesn’t seem to have occured to anyone, during the refrigerator mother era, that caring for an unresponsive or extremely fractious and sleepless child might leave a woman shell-shocked, depressed and ambivalent about parenting – in other words, that parenting is two-way, and to some extent, the mother is made by the baby just as the baby is made by the mother.

Here’s another extract from Far From the Tree:

In 1965, parents created the National Society for Autistic Children; at the first meeting, they are said to have worn name tags in the shape of little refrigerators. ‘We mothers would have liked an apology,’ said Eustacia Cutler, mother of the prominent autistic intellectual Temple Grandin. We deserve it. And so do the fathers.’

Do watch Temple Grandin, the biopic with Claire Danes in the lead role – it’s brilliant.

The students who took hidden children out into the world

Writing about Far from the Tree has reminded me of the Ely scandal, which prompted the inquiry that lead to the beginning of the end of widespread use of long-stay institutions to house people with learning disabilities.

Can somebody please make a film about the first group of people from a long-stay mental institution (Ely, a few years after the inquiry) who went out to live in the community, helped by a household of Cardiff students?

From an account by David Brindle, in the Guardian – ‘Honour for Jim Mansell, who brought learning
disability out of the shadows’: ‘In 1970, there were 60,000 adults and children with learning disabilities living confined, institutional lives in long-stay hospitals. That autumn, a young student [Jim Mansell] newly arrived at Cardiff University agreed to help take a group of children from the city’s Ely hospital to the cinema on a Saturday morning. From that point on, the hospitals stood no chance… The children had shaven heads because lice were endemic, Mansell said, and “I remember not enough underwear, so people [were] wearing pillowcases pinned around them, trousers held up with pins”.

He continued: “We took a crocodile of these children across the road, out of the hospital, and through a council estate to a cinema, and the people on the estate came out … to press money into our hands to buy things for these children because they were in such obvious need. We were so angry about what was going on, we formulated the idea that really these kinds of places shouldn’t exist and people should be able to live in houses with whatever support they needed in the community.”

Christmas with my child with autism


Christmas with my son with autism
The Christmas before my son was diagnosed with autism, back in 2010, was pretty tricky. I remember at least one spectacular meltdown in front of a shocked visitor! At that point a full diagnosis was still six months away. We didn’t know for sure why he was behaving the way he did, and that uncertainty only added to the strain.

He spent a lot of time involved in solitary play, twiddling objects – straws were a favourite and he had a whole bank of them lined up. If someone he didn’t know well came to the house, he would turn his back on them and twiddle furiously, humming as if to drown them out. Even then, he was showing some signs of interest in Christmas – he liked to look at the lights outside people’s houses – but insisted on stopping at each drainhole we passed in the street and getting down on the ground to look at it.

He was three years old and, though we didn’t know this, he was anaemic. Once that was spotted and he was given an iron supplement, things began to improve. We also learned more about autism and how to support him, and over time, he has developed and changed, and has coped with situations that would once have seemed like impossible challenges.

I’m pleased to say that this year we had a really good Christmas (bar one or two glitches!) We now have a much better idea of how to help prepare him for new experiences by using social stories, and his language skills are much better and he’s more settled. We can still get caught out and there will always be setbacks, but it’s a lot easier than it was.

Getting through the Christmas show

Back in 2010, one of the experiences that made it most obvious that Tom was different to other children in his peer group was the Christmas show. You get used to your own child, but when you see him or her with others, the differences become very obvious.

I still find the Christmas show nerve-racking – I know it’s very weird and intense for Tom, and you can’t really prepare for the strangeness of standing up on a stage in front of a hall packed with expectant parents. But at the same time I want him to be part of it and enjoy it, if possible. And he does! He is at a mainstream school, and the staff have always been brilliant at managing him in this unusual, high-pressure situation.

Last year he came on at the end of the show and said ‘Thank you for coming’. This year he made it all the way through, sitting with the other children when he wasn’t on stage and playing on the ipad with the sound turned down. When it was his turn to go up and do a song and dance, one of his friends took him by the hand to guide him up there.

He was very clear that he wanted to take part, and we have a lovely picture of him beaming in his costume. It’s all practice – next time it will be even easier!

Easy like Christmas morning

light-up toysWe always spend Christmas at home, and make sure there are intervals between visiting and having visitors. We have to try and keep it relaxed for everybody, because if we get stressed so does Tom. He has always loved Christmas lights, but this year he got into carols and Christmas songs in a big way – plus light-up Christmas toys. And he now eats the chocolates in his advent calendar! He passed on most of Christmas dinner, but was very happy with some of the little sausages and mash. And this year he helped unwrap his own presents! He got some practical things, like clothes, and lots of sensory toys, including playbeads, which are a bit like playdough, and toys that make sounds, like his megaphone toy.

He also went to his Christmas school disco for the first time, which was an absolute triumph – brilliant! He got a best dancer certificate! The lights were very intense for him, I could tell, but it was great to see him grooving! And attempting to learn the moves to ‘I am the music man…’

We had some other firsts over Christmas too. It hasn’t seemed like the right time to try these things till now – but I think Tom was ready and we were too.

  • Autism-friendly cinema screening of Frozen at the Odeon in Oxford – the first time all four of us have been to the cinema together, ever.
  • We met Santa on the Cholsey and Wallingford railway – the Bunkline. Brilliant, very mellow.
  • We went to a relaxed performance of Father Christmas and the Icicle Bicicyle at the Oxford Playhouse‎. They sent us a social story all about it in advance, so he knew what it was going to look like, and he got the chance to sing Jingle Bells! I have never seen him so engaged in any performance. He was a bit skittish and got up and ran round once or twice, but they were very good and just calmly reminded him to sit down. It was a really magical experience for both of us.
  • Tom also went to his holiday club at Kingfisher School in Abingdon, which was then run by the Guideposts Trust and ran lots of different activities and had great facilities, like the ball pool.

And he signed his name on his thank you letters! We did have one really bad day after Christmas when it all went pear-shaped and he got very upset and scratched his face. But there was a lot more good than bad.

There are various charities that offer support to families over the Christmas period and all year round:

I also hear good things about Oasis‎ and parent support groups such as Shift. Another great charity is Cerebra‎.

When we put our tree up, Tom said our living room had turned into a Christmas living room – but he also understood when Christmas was finished. He’s still singing the songs though. And  we are already looking forward to next Christmas!

The moment I found out about my son’s autism

138
Tom pre-diagnosis, twirling flowers in his hands: we had no idea this repetitive play was a symptom of autism

I expect that for all parents of children with autism, there is a point at which you realise that life has changed, and it is never going to change back again. This is when you finally recognise that you are going to have to learn about something you do not understand, and you are also going to learn to live with it and love it, because that something is autism and (you now know) it is part of your child, and your family and so, indirectly, of you too…

At first, let’s face it, this is a shock. Acceptance, maybe a degree of illumination, comes later. But at that moment of recognition – this is no longer something remote that happens to other people, it is real and it has happened to you and will carry on happening – it is as if a fog has suddenly descended, and you can see no way out.

Because all you know is what everybody else knows – Rain Man, The Curious Incident of the Dog in the Night-Time – and it seems that what you’ve just been given is Bad News, although at the same time life carries on from where you left off and, perhaps, what you’ve just been told makes sense of some hitherto unacknowledged aspects of what life was like before.

Here’s how I found out.

The warning rash

It started with a rash – a non-fading rash, the type you are told, as a parent, to be vigilant about and test with a glass pressed to the skin (if the spots fade, it is not ominous), the potential warning sign of meningitis.

My son Tom, three and a half years old, was ill, with a temperature, lying on the sofa at home. He was clearly unwell, but I thought it was one of those sudden fevers that young children get, that often pass as quickly as they came.

However, he wasn’t really capable of telling us clearly how he was feeling – his ability to express himself freely was very limited. He understood much more than he could say – we had learned to communicate with him by asking him questions he could answer ‘yes’ or ‘no’ to. He sometimes echoed other people’s speech, which could give the  deceptive impression that his command of language was greater than it really was.

That day, there was no obvious sign that whatever he’d come down with was anything out of the ordinary… until I saw the rash. I only noticed it because I had taken his t-shirt off to help him stay cool. It was just three spots, which didn’t look too bad, but they didn’t fade. I knew at that point I needed to get him checked out, and quickly.

At paediatric A&E, the medics initially seemed fairly relaxed and hopeful that it would turn out to be nothing too serious; after all, Tom didn’t appear to be seriously ill. He was off his food and drink – not a good sign – but he certainly didn’t seem to be in pain.

The mood changed as soon as his blood test results came back. These indicated that he was fighting a very serious infection. The medics seemed slightly bemused by how a child who appeared to be nothing more than a bit under par could actually be in such a bad way.

The next day he was diagnosed as having a ruptured appendix. That was what had caused the rash – the infection had spread into his bloodstream. Once the cause of his illness had been established, he was booked in for surgery straight away. This was the NHS at its best – dealing with an emergency, saving a life.

It was the last op of the day, and it took a long time because they had to clean out Tom’s insides. My other half was back home, looking after our daughter; I sat by myself in an otherwise empty waiting room, reading Victoria Beckham’s autobiography, unable to do anything other than pass the time. Sometimes a book is exactly what you need, and at that point, that particular book was an effective distraction. I have retained a special soft spot for Posh Spice ever since.

When it was all done I saw Tom and met the surgeon. He looked shattered; I thought of the intense concentration it must have taken, to ensure that every last trace of infection was removed. And I was profoundly grateful, and relieved that it was all over.

Questions and answers

But then, a few days later, a paediatrician drew me aside. He said the nurses had made some observations about my Tom’s behaviour while he was on the ward recovering from the operation; did I have any concerns about it?

Certainly, we were worried about Tom’s delayed language development, and had already had some communication about this with health professionals, but I wasn’t quite sure what the doctor was getting at. Talking was clearly a problem, but on the whole, Tom was a placid, even passive child – so why the question about behaviour?

We were outside in the garden area; Tom was much better by this point, freed of the various tubes and wires he’d been attached to post-op, and was playing on a bike. It was reassuring to see him like that, the doctor said. I was offered an out-patient developmental assessment, which I gratefully agreed to. But still, something niggled… I knew there was a further question I had to ask.

It wasn’t until Tom was being discharged that I got up the nerve to ask about what exactly the nurses had observed. Repetitive behaviour, I was told: twiddling small objects in his hands. Oh yes, I said. He does that all the time. What could that mean, then?

The doctor said carefully, It could suggest an autism spectrum disorder.

And then I went home in a cab with Tom – my other half was taking our daughter to her swimming lesson. The weather was awful; it had been tipping it down. They were excited to notice a couple of rainbows, but I felt that I had been plunged into a world of black and white.

That evening I googled autism. And that was how I found out.

It made sense. It made me sad to read the statistics – the prospects for employment, the prevalence of bullying, and so on. And it still does. But over time, the sense of gloom I felt that night has receded. I think it was probably shock as much as anything. And fear: fear of the future. Fear of the unknown. Fear of other people, too, and what they might do.

I won’t say those fears were all groundless, but there was also so much to hope for and be grateful for: so many blessings to count. I’ve come to realise, since then, that the calmer and happier and more loving I can be, the better things tend to go. I know that sounds really obvious, but it’s harder in practice than in theory!

And so here we all are, with our much-loved boy, as lucky as anything. We’ve been helped along the way by some great people – not least the staff at Tom’s excellent school – and some brilliant charities:

  • Ambitious about Autism, which supports children and young people with autism and their families. In a few days’ time I’ll be taking part in a Thames river swim organised by a friend to raise funds for Ambitious about Autism – here’s our JustGiving page. I’ll let you know how we get on!
  • The National Autistic Society – I recently did an EarlyBird course with the National Autistic Society – this brings together parents and carers with staff from the child’s school to learn about autism and strategies that can help to give children the best possible chance to thrive.

I discovered the websites of both Ambitious about Autism and The National Autistic Society on that first evening when I started to try to find out about autism – they do a great job of raising awareness and providing information and support. Here are some more charities that have given us invaluable help:

  • Guideposts Trust – runs terrific holiday playschemes for children with disabilities. Tom absolutely loves going to his holiday club.
  • South and Vale Carers Centre – fantastic volunteers provide advice on filling in DLA (Disability Living Allowance) forms – which are pretty daunting, and very long.

More about autism from my blog

My best reads of 2012

The books pages are filling up with round-ups of what people most enjoyed reading this year, and here’s my contribution. Most of my choices are fiction, but there’s a bit of poetry and non-fiction in there as well – and only two books with a 2012 publication date. I tend to let the idea of a book grow on me, or go with recommendations or gifts, rather than struggling to keep up with all the latest releases… Or in the case of Game of Thrones, I watch it on DVD first!

I haven’t included Fifty Shades of Grey, which I couldn’t honestly say I enjoyed, though it did pique my interest, and it is currently the only book in the house hidden away out of children’s reach, so I guess that’s a testimonial of a sort. (Here’s my blog post about why I prefer Jilly Cooper’s Octavia.)

There’s plenty in the list below that has made me think, taken me out of myself, made me see the world differently, and, in some cases, prompted me to wonder how I could ever have left it so long before coming to the book in question.

Still, sometimes you just hit upon the right novel at the right time… So here are 10 of my favourite reads of the year, in no particular order.

1. Game of Thrones, by George R R Martin

I’m filled with admiration for this. The scope and boldness of it, the Shakespearean echoes, the vivid and entirely real characters fighting for survival in a fantasy world, the way each chapter is paced and shaped… Onto the second volume in the series now. Here’s an earlier blog post in praise of Game of Thrones.

2. Constellations, by Ian Pindar

My other half’s second poetry collection came out in May this year, and has just received a wonderful review (along with Emporium, his debut) in the TLS. Musical, beautiful, elusive, melancholy and profound. You can read more about it and about Ian’s other work on his blog.

3. Bing Yuk!, by Ted Dewan

This gets my award for the children’s book that gave us all most pleasure this year. My autistic son had spent a lot of time reading Jelly and Bean books with me, and they are amazing – he was able to decode them in a way that was simply not possible with other books. Then I read Bing Yuk! to him and he was absolutely charmed. (He is a much more fussy eater than Bing Bunny, who won’t attempt a tomato, but does like lots of other things.) ‘Bip!’ and ‘Sput!’ have pretty much acquired the status of catchphrases round here… Meanwhile, my daughter enjoyed the Harry Potter novels, which made for some later-than-ideal bedtimes.

4. The War Against Cliché, by Martin Amis

I struggle a bit with Martin Amis, simply because he was a writer that boys, or I suppose young-ish men, liked when I was studying English and they were too, and I couldn’t ever quite get over the suspicion that they had appropriated him because they felt that in some way he was on their side and not on mine. It’s something to do with that scene in The Rachel Papers… (I should qualify this by pointing out that not all the literary-minded boys I knew at the time were diehard Amis fans – just enough for me to feel slightly irked…) Anyway, I read this collection of prose this year and must admit, albeit reluctantly, that it is blooming brilliant. Dammit.

5. Heartburn, by Nora Ephron

For humour at the edge of heartbreak: unbeatable. Memorable for, among many other scenes, the description of how the narrator’s family made its money, and her mother’s expletive-peppered reaction to finding herself in goyishe heaven after a near-death experience (she promptly decided to come back to life).

6. I Capture the Castle, by Dodie Smith

I can’t believe it took me so long to discover this novel. Charming, dry, funny and sad coming-of-age tale in which the daughters of a helplessly blocked writer pit their wits against poverty, hunger and the inconvenience of living in a crumbling castle. A great book for any writer to read, since so much of it is about putting pen to paper (or putting it off).

7. The Hunger Games, by Suzanne Collins

Ian told me he saw someone walk down the street reading this, and then cross over without looking up and carry on along the other side of the road. Dangerously addictive. Very carefully put together so as to maintain your sympathy for a heroine who might just have no choice but to kill.

8. The Help, by Kathryn Stockett

Horrible Miss Hilly finally gets her comeuppance… and Skeeter gets the help she needs to tell the story she wants to tell. The stakes are high, but in the end the truth comes out… The plot is driven along by a plan to write a dangerous book in the face of an impossible deadline, and there is plenty of anxiety about the book’s possible reception. Seems to me that Kathryn Stockett wrote her own fears about the story she was telling, how it would go down with her readers, and whether she was entitled to tell it at all, into the heart of the narrative – and that combination of dread and compulsion is part of what gives it its power.

The Help, I Capture the Castle, and Neel Mukherjee’s A Life Apart, which I’m going to mention later on, all feature in this blog post about the way writers treat the subject of writing in their fiction.

9. Merivel, A Man of His Time, by Rose Tremain

I read Restoration, which features the same hero, back when I was still at school, and associate it loosely with A S Byatt’s Possession, pre-Raphaelite paintings, and going to see a French film in London for the first time (it was Gerard Depardieu in Cyrano de Bergerac, at, I think, The Lumiere). I’ve read very little historical fiction since, and I didn’t know what to expect from this new novel, which catches up with Merivel in middle age, but I certainly wouldn’t have expected a tale of queasy romantic compromise, near-starvation in Versailles, and a tragically thwarted attempt to save a bear.

… and some more great reads…

Top ten lists are a bit artificial aren’t they? It’s a format that lends itself to omissions. So here are some extras.

Bonus mention goes to The Writer’s Journey by Christopher Vogler, which is about archetypal elements of stories – the relationships between the hero and characters such as the mentor and the shapeshifter, the trials and setbacks that have to be overcome on the hero’s journey. It explores the fresh twist given to age-old archetypes by films as varied as Star Wars, Pulp Fiction and Titanic, but when you start to look, you can see the story structures he talks about all over the place. (I spotted some in Stop the Clock! And now I know why crucial scenes so often happen in bars!)

Among other storytelling tips, I took away from this book the advice that you should be sure to have enough hazard in your fiction. A hero has to be up against it. Up against nothing much won’t do.

Also this year, I enjoyed my first ebook, though I read it on PC rather than Kindle so I’m still lagging behind the times: A Matter of Degree, by local author Beckie Henderson, a story of romance and poison pen letters set in academia, which opened my eyes as to what might be going on behind the scenes in higher education. Here’s Beckie Henderson’s blog about being a working mother.

I’m going to wrap up with a shout out to the writers who are mentioned in the acknowledgements to my first novel, Stop the Clock: Jaishree Misra, who has written six novels; Anna Lawrence Pietroni, whose debut, Ruby’s Spoon, blends magic with a Black Country 1930s setting, and tells the tale of a girl whose longing for adventure is granted when a mysterious stranger comes to town; and Neel Mukherjee, whose novel A Life Apart follows the stories of an Indian student in England and an Englishwoman in India. (Ian Pindar, my other half, is mentioned in the acknowledgements for Stop the Clock as well, of course.)

Final honourable mention goes to The Penguin Book of Twentieth-Century Essays, edited by Ian Hamilton, full of gems like George Orwell’s essay on Englishness, and Martha Gellhorn’s account of Ernest Hemingway getting into a butch-off with a Spanish Republican Army general, in ‘Memory’.

My reading ambition for 2013: rationalise the books. They are everywhere, in tottering heaps round my desk, in the kitchen cupboards… The writing’s on the wall. Ebooks are the way to go.

Aftermath of a scandal: Winterbourne View, Panorama, and my family’s fears

I avoided watching the Panorama documentary on the Winterbourne View private hospital when it aired – my husband sat through it, but I couldn’t bring myself to. As we are parents of a child with a learning disability, inevitably, when the Winterbourne View scandal broke, both of us were struck by the same fear: ‘What if that were to happen to our son?’

When our daughter caught a glimpse of a recent TV report about the trial and conviction of a number of the former workers from Winterbourne View, and picked up the gist of what was going on, she was horrified – I mean real horror, the sort you see represented in films when a malevolent stalker breaks into the family home, intent on harm.

I think (hope) we were able to reassure her. Perhaps it is a measure of how kindly our boy has been treated at school, by professionals and by the community around us that she was so profoundly shocked by the idea that anyone would behave in that way to people who had similar difficulties to her brother.

But can we really feel confident that our son is safe from the danger of ill-treatment at some Winterbourne View hell of the future? I think not. And it’s no good thinking ‘over my dead body!’ Now that I’ve finally brought myself to watch bits of the original Panorama documentary, and the follow-up, still available here on the BBC iPlayer, I can see how little control families have over what happens to their loved ones, who, it seems, can be whisked away to the other end of the country at a moment’s notice. Interesting how this seems to have happened on a couple of occasions when concerns about care had been flagged up.

Who could forget Simon Tovey, the affectionate, bear-hugging chap who was bullied and ill-treated at Winterbourne View? His mother, Ann Earley, describes here the guilt she felt over what happened to him. But the Panorama documentary shows what Simon Tovey’s family was up against: a cruel, senseless, but all-powerful system that, faced with a request for an extra £600 a week to pay for the care Simon needed at a local care home, ultimately sent him off, via another care home, to Winterbourne View – for years on end.

Before a decision was made to take Simon out of the local care home, he was assessed by doctors – but in a hospital environment, and, Ann Earley says in the Panorama documentary, when she questioned this, she was told that if she didn’t agree, Simon would be sectioned.

Now Simon’s back at that local care home, near his family, and this is costing £1,400 a week LESS than Winterbourne View.

Here are some more interesting numbers. A placement at Winterbourne View cost £3,500 a week. Yes, that’s right, £3,500 a week… for what? Staff were paid on average £16,000 a year. The undercover reporter, Joe Casey, who filmed the abuse at Winterbourne View, was paid around £303 a week for 12-hour daily shifts. According to my calculations, that would have covered 11 members of staff for each person placed in the hospital.

Where did all that money go? And why is it acceptable to lavish taxpayer money on poorly regulated private companies at a time when the government is determined to cut back on the relatively meagre sums that go directly to disabled people or their families?

What about the people in charge, those higher up the organisation that owned and operated Winterbourne View? This 2011 article in Community Care about the management structure of Castlebeck makes interesting reading.

So what about Castlebeck now? According to its website, it’s ‘following a wide ranging framework of change’, and ‘The safety and well-being of the people who use our services remains our top priority.’ So that’s all right then.

As for those former Winterbourne View workers who have been sentenced… We can only hope that they will change their attitudes and the way they behave, and won’t find fresh victims to target in prison. According to this research by the Prison Reform Trust, around 8% of general population has a learning disability or borderline learning disability, and this rises to around 32% in the prison population.

Here’s what the National Autistic Society has to say about the aftermath of Winterbourne View: ‘Far too many people with autism are sent away to assessment and treatment units, and other institutional settings, which are often miles away from their homes and families.’ It believes the Government must act to stop

  • poor commissioning
  • lack of training of staff
  • lack of regard for human rights and poor safeguarding procedures
  • inflexible funding arrangements

Yes. A thousand times yes. The system needs to change. But even that won’t be enough to rid us of the fear that one day, our affectionate, placid, but vulnerable son will fall victim to the sort of ill-treatment that Joe Casey caught on camera at Winterbourne View.

Happy first book birthday to Stop the Clock

Dreams don’t come true without a bit of outside help; someone else has to wave the magic wand and give you permission to go to the ball. My debut novel, Stop the Clock, is published on Thursday 16 August, a big day for me which wouldn’t be in the offing without the hard work and encouragement of numerous other people along the way.

The publication of Stop the Clock represents the culmination of more than three decades of wanting to be a writer, and an awful lot of pens, printer ink and paper. I’m very grateful to my agent and to my editor and the rest of the team at my publisher, Black Swan, for transforming my manuscript into the finished book that will hit the shelves on Thursday. It’s been one hell of a ride – now for the final fast downhill run!

None of it would have happened without the back-up of my husband, the poet and writer Ian Pindar, an editor par excellence who always has a cool head in an IT crisis. Ian has a sharp eye for a redundant word, and a disciplined attitude to work that I’ve tried to emulate. It’s always very reassuring to have him look over something before sending it out into the world.

He’s also a dab hand with a camera. He took the photo of me on this blog, which makes me look at least five years less tired than I really am.

A big thank you to my ideal readers

Ian was one of the book’s first readers, but there were others who helped to get it through the early stages too. Books that give advice about creative writing often talk about how, when you’re writing, you should imagine the ideal reader, the sympathetic audience that is receptive to what you have to say, and willing you to say it. It’s a bit like the scenes in the film The King’s Speech where George VI speaks directly to his speech therapist rather than to the terrifying masses. I was lucky to have just the right reader at each stage in the development of my book. They take pride of place in the acknowledgements.

Stop the Clock is a book about friendship, and I wouldn’t have been able to write it if it wasn’t for my friends, though I’m grateful that we haven’t had quite such a fraught time as Natalie, Lucy and Tina.  Thanks are due to my family too, and my children, without whom Stop the Clock would never have got started.

My experience of working on the book over the last three and a bit years has been bound up with what has been happening in my family, in particular my son’s diagnosis with autism. It’s been a strange, intense time, but while the future is always uncertain, I think we feel much better placed to face up to it now than we did a couple of years ago. So thank you to all the people who have cared for and taught him, and advised us on how to help him, and to our lovely, supportive local community.

I’m really looking forward to the launch of Stop the Clock in our home town week after next. Finally the time has come for the book to make its way into the world! I feel like a mother on a child’s first day at school, waiting at the gate, peering at the playground and realising that what happens next is out of her hands.

Part of parenting is letting go. So goodbye and good luck to Tina, Lucy and Natalie, the three main characters who originally existed only for me and a handful of others, and now are ready to tell their stories to anyone who wants to read them.