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.
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).
It’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.
When 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.
Over 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.
Some 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.
Here he is with another creation – a spinner.
Lining things up is good, especially with the help of a suitable wall.
The line below is of robot vacuum cleaners. Or he was pretending they were, anyway.
Not sure what these sensory animal toys make of the morass of other stuff they’re warily eyeing up.
Sometimes, it all just gets a bit chaotic…
But sometimes, the effect is rather magical.
Soft toys do have their place, too. Well, Blue Bear, Tom’s autism awareness bear, definitely does.
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…
Insides of things are sometimes just as important and interesting as outsides.
Sometimes it is essential for alien eggs to live on the kitchen table for a while…
‘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
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
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!
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.
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.
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.’
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
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.”
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
We 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 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!
Not surprisingly, we hesitated at the water’s edge. Sure, there had been a heatwave, and the Thames was likely to be rather less freezing than it might usually be. But it did look somewhat murky, and we’d committed ourselves to swimming a mile of it. Downstream, sure, but all the same…
It was all a bit Calendar Girls. There we were, three women on the more experienced side of 40, having just taken up a range of increasingly silly poses for the photographer from the local newspaper. We were sporting a selection of vintage swimhats that were beyond absurd: heaven only knows where my friend had got them from, or why she should have a collection of such things.
All this was in a good cause: we’d planned our mile-long river swim to raise funds for the national charity for children and young people with autism, Ambitious about Autism. And it was a cause close to my heart, as my six-year-old son has autism.
About to swim a mile in the dirty river Thames on Sunday with @AlisonLMercer. Hoping it will be comedy gold on many counts.
As we stood together looking down at the Thames, we knew there was nothing for it but for to get in or to admit defeat and go home. And there was no way we were going to do that. Our friends, family and colleagues had already supported us to the tune of around £700. (If you’d like to sponsor us too, that would be just brilliant – here’s our JustGiving page – it’s still open.)
We’d shed our charity t-shirts. Standing on the little jetty in our swimming costumes, we were fast approaching the moment of no return.
Our eyes met. I don’t know who said, ‘Oh come on, let’s get in and get it over with,’ but somebody did. And then we were in.
We posed for a few more photos, and then we were off.
I’d taken my swimhat off by this point. Too tight!
Three women in the river, chatting all the way
I’d originally been absolutely adamant that I was NOT GOING TO TALK. When I’m in my local swimming pool I get a little frustrated with those ladies who swim along double file, talking all the way. Swim! Chat later! I find myself thinking. And anyway, talking might have increased the chance that some of that Thames water – supposedly better than it used to be, but still, not exactly pure – could end up in my mouth, and then ultimately in my stomach, with potentially unpleasant results.
Did I stick to that? Did I heck. After the first few strokes, I heard my friends, the two Helens, chatting away behind me, and of course I joined in. We chatted solidly the whole way. Apparently the acoustics were such that our riverbank supporters could hear every single word loud and clear, even when their view of us was obscured by foliage.
Just a note of caution – swimming in open water is potentially dangerous, and I’m not going to advocate it. As we all know water is always to be treated with great respect and wariness. I was nearly bowled out into the sea at Cornwall as a small child, and that is one of my formative memories – in fact, what I remember best of all is not being in the water, but having to wear a very odd assembly of everybody else’s too-big clothes on the way home, and no knickers.
One of my friends is an experienced river swimmer: she’d come up with the idea for our Thames dip and researched it. My river companions started thinking about our next challenge almost as soon as we’d finished this one!
Helen Rumbelow, me, Helen Sage. Check us out! Yeah!
The real challenge that day, however, was the one accomplished by my husband, who looked after our children on the river bank. We’d hesitated about whether to bring our son. It was an absolutely exceptional situation – would it confuse him? Would he run off? And yet we had talked to him about it and it was clear he wanted to be there.
And so he was. And I will always treasure the memory of seeing my husband and both my children all there together, smiling and waving at me as I looked up at them from the river.
Tom pre-diagnosis, twirling flowers in his hands: we had no idea this repetitive play was a symptom of autism
When I found out that my son is autistic, I barely knew what autism was. I’d seen Rain Man and I’d read The Curious Incident of the Dog in the Night-Time, and that was about it. I was almost entirely ignorant. But as life carried on, what I had been told began to make sense.
Here’s how I found out, back in autumn 2010.
The warning rash
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, and 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 when I checked them with a glass pressed to the skin, they didn’t fade. That meant it was the type of rash that you are told, as a parent, to be vigilant about. A rash that doesn’t fade when pressed is a potential warning sign of meningitis. 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 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 what I read made sense. I could see that the diagnosis the doctor had suggested was right.
It made me sad to read the statistics – the prospects for employment, the prevalence of bullying, and so on. 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 and of vulnerability. Fear of other people 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.
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 2013 I took part in a Thames river swim organised by a friend to raise funds for Ambitious about Autism.
The National Autistic Society – I 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 over the years:
Yellow Submarine – brilliant Oxfordshire charity that runs a holiday activity scheme for children aged 11 and over with learning disabilities and autism, and also offers training and work experience. There are Yellow Submarine cafes in Oxford and Witney. Do pop in if you get the chance!
South and Vale Carers Centre – fantastic volunteers provide advice on filling in DLA (Disability Living Allowance) forms – which are pretty daunting, and very long.
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?
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.
All children with autism have difficulties in three areas – social imagination, social communication, and social interaction, the so-called ‘triad of impairments’. So, for example, an autistic child playing with a toy car might not have the natural instinct to make it behave like a play version of a real car – racing and crashing with other cars, say. Instead, the toy car is a little thing that looks like a car, and has wheels that go round.
Not having social imagination is not the same as having no imagination; children with autism can have ideas and use language in ways that are startlingly original. But it does mean not being big on the kind of imagination that lends itself to play with other children.
I’m putting in lots of qualifications here because once you get through the triad of impairments, all children with autism are very different. Hence the headline of disability campaigner Nicky Clark’s article for the Independent: ‘When you’ve met one person with autism, you’ve met one person with autism’.
That’s true of parents of children with autism, too. Obviously we’re all very different. And yet we all have some big things in common. So when I watched Nicky Clark’s recent interview on the Ambitious about Autism website there was a lot I recognised. What she said about her reaction to the diagnosis struck a chord… that sudden realisation that you have a child with autism, and all you know about autism is Rain Man. I think, too, the problems of taking children who behave differently out in public must be familiar to many if not all parents of children on the autism spectrum. And one of the key problems is everybody else’s reactions.
Other people: sometimes lovely… sometimes part of the problem
Sometimes people are delightfully tolerant and laid back, and sometimes they can be quite snotty, especially if they think what they’re seeing is bad behaviour. What they don’t realise is that the parent of an autistic child is managing an extraordinarily difficult balancing act. The baseline is that the child needs to be kept safe. The hope is that whatever the outing is, it will be a success, that the child will learn something about how to behave in the outside world, or maybe even enjoy the experience, and the family will be able to enjoy some time together. And the fear is that one thing after another will go wrong and the child’s anxiety will escalate into a total meltdown, which is always the looming threat in the back of your mind.
Oh, and just one other thing: I wish people would stop trying to insult politicians by suggesting or stating that they’re autistic (a certain kind of commentator seems to go in for doing this very aggressively online). I mean, come on. I guess they think they’re being funny or, most likely, they’re not really thinking at all. Or maybe they actually like being nasty. Always a possibility.
What will happen to my child who is on the autistic spectrum when I’m not here?
Another familiar worry that Nicky Clark refers to in the interview on the Ambitious about Autism website is this: what will happen to my child with autism when I am no longer around to look after him or her? I think all parents fret about what would happen to their children if they died (and many of us push that fear to the back of our minds, tell ourselves it won’t happen, and don’t do anything about it). But if you have a child on the autistic spectrum, the worry becomes, not what will happen to my child if I die, but what will happen to my child when I die.
If you are a parent to a child who is going to face major challenges in living independently, you lose that assumption that if you are around till they reach adulthood, they will ultimately be able to carry on without you. I’m sure empty nest syndrome is very hard, but getting to that point is a sign that you have done what a parent is there to do – you have nurtured your child through to independent adulthood – and for some families getting to that point is an almost impossible challenge.
Parenting involves letting go, and if your child is particularly vulnerable, that process is much more fraught. Ultimately, whatever provision you make, you feel that your child is going to end up dependent on the kindness of strangers. Will they be kind? In the end, you can only hope they will.
But, of course, in the meantime, you can try to help people to understand, which is what Nicky Clark does so well. Women don’t always rush to stand up for themselves, but by God we’ll stand up for our loved ones, and I foresee her being an indefatigable campaigner for years to come.
Somebody else who deserves a big vote of thanks for helping to raise awareness of autism is Louis Theroux. My husband and I weren’t quite sure what to expect from his recent BBC Two Extreme Love documentary about autism, but found ourselves nodding along in recognition; there was just so much in it that was familiar. I really liked the approach he took, of being a sympathetic listener.
The sunlight on the wall
I was very touched by what Nicky Clark had to say about the special moments, and that rang true, too. My son has a lack of guile and spite that is really quite astonishing, and I get the impression that this innocence can often come hand-in-hand with autism. I was interested, too, in what she had to say about the ability of people on the autistic spectrum to see straight through to the heart of other people, past all the peripheral and superficial aspects.
My son strikes me as being very good at picking up on non-verbal cues. If there’s stress in the air, he picks up on it without anything being said – I know that all children do that to some extent, but he’s particularly sensitive to the atmosphere. And he would be unlikely to be beguiled by someone pretending to be something they were not, because he wouldn’t really be drawn in to the pretence in the first place. I’ve seen other parents comment on this, too – there can be an otherworldly quality to autism. With my son, I sometimes wonder what he is taking in that I am oblivious to.
One of the people who works with my son told me one day that he’d seen a patch of sunlight shift on the wall and started laughing. She said she would have loved to have known how he had perceived it. I’d love to know, too.
There’s an amazing video on the National Autistic Society website of Dr Temple Grandin giving a speech. The video is amazing not just because of what she has to say, but the fact that she can say it at all.
Most of us would be pretty scared of addressing a hall full of people, but here is someone who is autistic, for whom communication is particularly challenging, speaking in public at length, fluently and lucidly and with such authority… She’s incredibly impressive. And it just goes to show what someone with autism can achieve with the right kind of support early on.
You can find the video of Temple Grandin’s speech, and some more about her, on the National Autistic Society website.
Temple Grandin: early encouragement, later success
Temple Grandin didn’t speak until she was three and a half, and when she was diagnosed her parents were advised to put her in an institution. They didn’t. They found a speech therapist for her. A childcarer played endless games with her and her sister. In the speech recorded in the video, which took place in June this year in Reading, she says that one-to-one attention is what autistic children need in order to learn.
She gives some insights into what it’s like to live with the sensory perception difficulties that often go with autism: the pixellated vision, the challenges of trying to interpret other people’s apparently super-speedy speech. She also makes the point that autistic children need to be stretched, and looks back to her own fear about going to stay on her aunt’s cattle ranch.
Encouraged to go by her mother, she went, loved it, and ended up forging a career as a designer of livestock-handling equipment, and becoming one of the best-known people with autism in the world. I haven’t seen the film about her (Temple Grandin) starring Claire Danes, but I want to – her story is so inspiring, and Claire Danes is such a good actress, it should make for a great film.
Changes to the system for children with SEN: cost-cutting masquerading as efficiency?
But what about all the children with special educational needs (SEN) who don’t get that intensive help early on? We know that early intervention makes a big difference, but the system for allocating resources to children with SEN in the UK seems to be designed to slow up access to help.
Applying for a statement is a long and bureaucratic process; evidence of need needs to be absolutely watertight, and gathered over time. But once you’ve got a statement, it is legally binding; the level of help identified in the statement has to be provided.
Now the government proposes to sweep the system away. It says it wants to make things better, but there are so many unanswered questions. Will whatever replaces statements also be legally binding?
Ofsted seems to have decided that too many children are labelled as having SEN. How did it decide? Did it ask the parents? And if children need help, they need help, don’t they, regardless of why? Are they going to get it? Or is this really just another cost-cutting exercise, masquerading as improved efficiency?
It’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.
like maybe the seaside
