The trick is to keep breathing

The woods are soaking wet.

Above, tattered trees look exhausted by the relentless rain. Below, broken branches litter the way ahead. A sea of slugs and slimy vegetation make the going more treacherous still. I've been running for ten minutes and I'm already shattered. I wanted this run to take me away, far away. But it's forcing me to concentrate on every little detail around me.

The details, the bloody details. There is no escape from them, no matter how hard and how far I run.

Two weeks ago I finally received the piece of paper for which I have agitated and waited so long. The green logo of our local council has appeared on so many disappointing letters and bleak reports over the last few years that when I opened the latest envelope and saw it within, my heart sank on reflex -- before bounding when I realised that actually this was the letter that brought good news rather than bad.

The council has agreed -- finally, after years of pleading and negotiation -- that Grace needs more help. It says so in black and white in the statement on my desk. I have checked and re-checked this piece of paper every day since I received it. I still worry that it might disappear in a puff of smoke. It says that Grace requires very specific teaching provision, which it details clearly, and adds that she must also have one to one teaching support, 7 hours a day, 5 days a week. It also says that she must go to a specific school, the one we want, the one that can properly care for her and help her bloom.

The piece of paper means Grace now has a whole new life in front of her. Just like that, her future is brighter.

But the details are breaking my heart. Despite its ultimate message, the letter is not a happy read. It includes a long, long list of my lovely girl's inabilities. It sets her apart again. This sounds so obvious as to be ridiculous, but nevertheless it comes as a shock. In the day to day, my daughter is just my daughter. She is brilliant at some things, hopeless at others. The council's letter, a wonderful gift of education, also formally acknowledges a gulf between my daughter and other children. It makes me cry.

I spend far too much time crying (as patient regular readers of this blog will attest.) So I decide to throw myself at the next tasks in an attempt to halt the blubbing. I have to find a secondary school for my girl, and I have to start another running regime ahead of the next half-marathon in aid of autism awareness. (I am running the Royal Parks half-marathon again in October to raise funds for the National Autistic Society.)

The first bit of this is easy. I know precisely which school I want for my daughter. It's out of our catchment area and so only accessible for us because we now have this statement. It's one of many reasons I battled so hard for the statement. The prospect of my daughter being forced to go to one of our local schools -- and get eaten alive there -- kept me awake at nights and fuelled my fight.

I know that the school I want specialises in supporting children with autism and Asperger's alongside the mainstream; I've seen its airy art studios, drama studios, music rooms and recording studios, and its theatre, its photography department and library. I've seen its position in the results tables.

Last week I took Grace along to see it. She started smiling very soon after we arrived and didn't stop after we left. Walking back to the car she clutched my arm and said: "Mummy, I can't wait to go to that school! I wish I could go there right now." She hasn't been so hopeful about school for years.

Then she went back to her primary school, where in a bubble of excitement she relayed her find. One of her classmates, a regular tormentor, started laughing at her and said that she thought she'd be going there too. In dismay, my daughter said that she had hoped this time to go to a school where she'd be looked after. Her tormentor told a teacher, who then shouted at Grace for saying that her current school wasn't looking after her.

I found all this out later that afternoon, at the end of a day in which I had felt more positive about Grace's prospects than I had done for years. I did what I always do: I comforted Grace and told her I would fix it. I phoned the school and talked the incident through with an apologetic-sounding teacher. Then I laced up my trainers and went running. There were slugs underfoot. There was driving rain in my face. After a while I allowed myself a small, hysterical giggle about a teacher who could think that the correct response to a child who felt unprotected would be to shout at her.

I kept running and after a while the details faded a bit.

The trick is to forget about the details.

The trick is to keep breathing.

On spoiling other people's fun

I keep spoiling other people's fun.

I have become a po-faced party-crasher: a poo-poo-ing puncturer of other people's pleasure.

I'm not sure how it happened. But I think the answer might have the words 'special needs parent' in it.

I've written before on here about enduring spiky interactions with professional comedians who take offence when their jokes about autism cause offence.

This week I tangled with an amateur humourist, but the symptoms were the same: rising nausea, rage and panic. Familiar despair.

This time the arena was a well-known department store. The children's department of a well-known department store. To be puritannically precise: the toy department of the children's department of a well-known department store. The place, of all places, to which children gravitate for fun.

I was looking for birthday presents for my baby girl, now no longer a baby quite so much but three years old, lively and smart as a whip. I was browsing in the Playmobil section, looking for cars and trucks -- anything with wheels, really, so that it might stand a chance of keeping up with her -- and reflecting on the difference between my baby and Grace, who at three was already drifting, dreaming, obsessing over the fantastical and far-away.

Then the jester spoke.

To my right a cluster of shop-floor staff were gathered around an art table, trying out a new creative device that was on sale, and comparing their efforts amid giggles and murmurs. One of them -- the only man, young and blonde and confident -- surveyed a colleague's efforts and pronounced: "I'm the artistic one. You're just autistic."

His workmates giggled, and elbowed each other. One said softly, "ooh no" and lowered her eyes and smiled. The jester puffed out his chest a bit and beamed.

I kept walking, round and around the displays, but no longer seeing them. First I felt white shock: spots danced in front of my eyes and my head buzzed as though I might faint. Then my senses rushed back in, led by overwhelming relief that Grace was not with me. Then: outrage. I stopped and looked back. The young man was walking smartly away from me and over to the book section, file under his arm, walkie-talkie in hand, passing out brisk, professional courtesies to shoppers along the way.

And I thought: should I say something? And then quickly afterwards I thought: I have to say something. And then just as quickly after that I thought: here we go again.

I'd love to have been able to just laugh it off. I'd love to have been able to roll my eyes and say "oooh, naughty" and dismiss it. I'd also love to stay out dancing and drinking until it's 4.30am and the birds are cooing in response to early dawn -- but those days are over too.

So I took deep breaths and lingered, and when the joker passed back my way again I stepped in front of him and said: "Excuse me, don't take this the wrong way but --"

What a ridiculous thing to say. How mimsy, mumsy, middle-aged mousy of me. But I didn't want to go straight into "How dare you" and I didn't want to say "Look here." I wanted to talk to him as me, just me, not one of the Professionally Outraged. I wanted him to listen. In the event though, I don't think he noticed how I prefaced my complaint. As soon as I got to the bit where I explained that I was the parent of a child with autism and that I'd overheard his joke, and that really, it would be sensible to reconsider such statements because they were liable to cause offence -- his eyes got very wide and fixed on a spot over my left shoulder, and his complexion took on a greenish hue. I left him, then, muttering "sorry madam, so sorry madam" over and over, in tones of mortification, to a spot on the wall in between the wooden building blocks and teething-ring stackers.

As jousts go it was terribly unsatisfactory. But then, there is rarely pleasure in this combat. No-one ever says "You know what? You're absolutely right and I'm an idiot and I can see that you're a very nice, normal person and you probably laugh at other jokes and even play the fool occasionally and I'm so sorry." They just look angry, or shout, or look like they want the floor to swallow them up, or like they might cry. And then I'm back to being the po-faced puncturer again.

In the event the store did issue me with a better, fuller apology. The jester's manager telephoned me and talked for a while, using words like "dignity" and "understanding" and "rebuke" and "regret". He said he would send me vouchers, which I said I would spend on Grace.

I'm still waiting for the vouchers. And for the day when it happens again.


Postscript: I received a letter of apology and £50 worth of vouchers from department store, along with a letter of apology from the manager of the toy department, who hoped the voucers would provide some recompense to me and my 'son'. 

A Real Princess

When I was a little girl, a princess was defined by her fragility.

Within the treasured, tattered collection of yellow-spined Ladybird fairytale books that lined the shelves in my bedroom, the princesses were all delicate-limbed, blushing, fine-browed beauties. In every tale their lineage was clearly established at the start: beloved child of the king and queen, possessing unparallelled beauty and all-round loveliness and tenderness. Doe eyes mandatory. Tiny waists, too. These were not girls who ran and jumped or asked questions or bickered. Time and again they waited patiently and in mortal peril to be rescued by a strong, brave challenger, who was coming to rescue them primarily because they were a. a princess and b. beautiful.

In case there was any risk of small girls missing the point, one of the stories -- The Princess and the Pea -- clarified that a true princess was so tender that she would feel a pea beneath twenty mattresses and be able to display her pedigree in the purple bruising brought by morning time. (Much to the prince's satisfaction.)

I loved those books. I pored over them for hours and traced the silken dresses and flowing locks with a finger, imagining how I would look in similar apparel. I didn't really clock the significance of the princesses' inaction. Eventually reading led me to more sophisticated tales, through Enid Blyton and C.S. Lewis to Jane Austen and the Bronte sisters and A.S. Byatt and Margarets Drabble and Atwood, and a world of heroines and women writers that took me far, far away from Snow White and Rose Red and Rapunzel.

Unless I went to the cinema, where the myth of the real princess still reigned. As an eleven-year-old I shifted with boredom through some of the male-populated blockbusters -- yawning and scratching at the endless men of the Star Wars franchises and pausing during the frantic plots of Back to the Future and Indiana Jones to wonder where the girls like me were. Women in those films were still there just to be kissed and rescued. They might get to throw the odd punch to make the chase more exciting, but eventually according to the rules they'd be caught -- twice, once by the man and then by his enemy, thus setting up a daring rescue mission for the film's hero. They might get the odd sassy line -- but too many wisecracks and their character would be downgraded to the frumpy tom-boy. After these films the playgrounds at school would be full of boys shouting and pretending to shoot and stab and brawl, while the girls stood around in gangs. (I went to the library.) These days the game seems largely unchanged except that the boys now come home and live out their version of the action on computer games, shooting and stabbing online (male) opponents. (Grace makes for her books and drawing paper.)

In between time, 'princess' has become a derogatory word. Alongside the fluttering eyelashes and belling skirts of story heroines -- and their modern-day spin-off, those cringe-inducing Disney characters and costumes for little girls -- it now means a woman who is hard work. A woman who is spoiled, vain and self-centred.

Who would want to be a princess? I find myself wondering, and I keep them well away from my tiny girl, my flaxen-haired three-year-old baby Betty, whose sneakers are perpetually filthy and who can load her big brothers' Nerf guns (tongue sticking out, one eye shut as she sights the barrel) in seconds. (There is another post here on girls and guns, but that's one for next time.)

Then last week Grace and I went to see Snow White and the Huntsman. Grace started the film curled sideways in the seat beside me, head under my arm, her fingers laced in mine, as she anticipated alongside the excitement of seeing the film, some anxiety about loud noises and bloody fight scenes. As the film unravelled, so she also unfurled, gradually straightening, unlinking from me and sitting ramrod upright, her face lit by the glow from the screen, eyes and mouth open wide as though she would drink it in if she could. The princess in this film is indeed beautiful and good (tick, and tick) but she is also strong and bold and ferocious in armour, beneath fluttering pennant. In one scene, she gallops along in slow-motion, at the head of an army, her sword at the ready, determination for vengeance in her eyes.

At this point Grace turned to me and said breathlessly: "That's a real princess, Mummy! Not like those rubbish stories!"

And suddenly the penny dropped. All those boys fighting and playing and shouting and dreaming of battles and winning. What fun! Where were those films for us women when we were growing up? Where were the films where the heroine was a depiction of the character you'd like to be? Where were the films that held possibilities, dreams and ambitions for you? As I watched Grace and watched the film I felt goosebumps. To see her connect with a woman who inspired her in this way was electric. I never thought I'd say it but: thank God for this Snow White. (And, frankly, also for the film's Wicked Queen, whose assault on the Kingdom is the vengeance of a woman who has been told that beauty alone is what gives her her worth and thus plots revenge on the world that created her.)

I watched the credits roll and thought that perhaps it was ok to let my daughter play at being a princess again.

Be good, and be brave, and let it be your armour, I told her silently.

We emerged from the cinema to find that a storm had broken. Outside, the skies swirled with black clouds and rain teemed down. Grace and I looked at the huge, heavy drops and then at each other. We grinned. Then we opened the doors, and ran out, whooping.

Saying Goodbye to the Tooth Fairy

Grace keeps asking me how old I am.

For the last two days, she has checked and rechecked: asking me in passing, in the gloomy shade of the hall; calling to me from the piano room, in between practising her scales; hovering by my arm as I prepare dinner in the kitchen. She asks me thoughtfully, with a frown, and vaguely -- focusing on a spot over my shoulder -- and directly, fixing me with those dappled hazel eyes of hers.

Each time I give her the same answer. "I'm 41, darling." Then I smile, and hope she can't hear that I am forcing my answers from between gritted teeth.

When I was growing up, the subject of my mother's age was verboten. This was partly because it was irrelevant anyway - my mum, an elegant Julie Christie lookalike who was frequently mistaken for my older sister, has always appeared at least ten years younger than her true age. Nonetheless, she viewed the passing of the years as something to be tolerated with melancholic stoicism, rather than celebrated. Birthdays were for expressing love and appreciation with gifts, not for mentioning -- or God forbid -- congratulating one on reaching a particular age. If that number had to be referred to at all it would be in passing, with a wince.

I never really understood, until last year, when I turned 40, and suddenly did. I could write another book on the way it felt to turn 40, but I think on reflection it's much better that I don't. Enough to say that it was a shock, and predictably brought about much contemplation on what time remains ahead, and how best to spend it. The next year passed, and things got done, and I thought I had stopped worrying and learned not to care.

But age is always a preoccupation in a house with children. The progression to a 'big girl' and nursery school for my baby and Grace's transition to double-digit birthdays -- oh, to have her early years again and do them better for her --  and secondary school mean that it's a struggle to remain detached given the constant markers of time passing.

So when my own birthday came around again last weekend I decided to meet it head on. I invited family and friends out for a celebratory dinner. I bought a new frock and indulged in mild hedonism, swapping household chores and sensible eating for socialising and fizzy wine and lazing in the sun listening to music. This is my birthday, I told myself, and it's lovely.

No-one told Grace. She came back from a weekend with her father (who had forgotten) and was mortified to find cards along the mantelpiece and the remains of chocolate cake in the fridge. She held her face in her hands and apologised abjectly. No need, I told her, just take to me to see that new Snow White film with all the lovely and dangerous-looking women in it. (Charlize Theron, four years younger than me, may be reduced to roles where she sucks the life-force from beautiful maidens, but my goodness she's looking great on it.) Grace cheered up.

But still, she keeps guiltily checking, as though because she missed the event she can't quite capture the moment at which my age flipped over by another year. And then she says, brightly: "Congratulations, Mummy!" It feels like being pebble-dashed in chocolate chips: sweet but painful.

Last night when Grace climbed into bed, she found that a tooth she'd placed under her pillow before departing for the weekend was still there. No tooth fairy had come, despite multiple conversations with me about when she/it might arrive in her absence. Grace came to find me with a doleful expression and a fragment of enamel in the palm of her hand. I felt awful. I had been so preoccupied with being not preoccupied about my age - while simultaneously celebrating it gaily and ever-so-nonchalantly - that I had forgotten my daughter's request.

Abruptly I exclaimed: "I'm so sorry!" Grace's eyes narrowed. "What do you mean, you're sorry?" she asked. There was a pause. I could see disappointment warring with curiosity in her face. We talked, and I explained, and she pondered for a while and then asked hopefully if I'd kept all of her teeth. I explained that regretfully, this was not the case. And I said sorry, again, for being too busy (and self-centred, though I added that bit in my head.) She hugged me.

Last night my daughter, again, grew up just a little bit more. And so - not before time - did I.

On empty budgets, and "looking disabled"

(I was lucky enough to have the opportunity to discuss the points below regarding the government's proposed changes to the special educational needs system yesterday: on BBC London Radio (I'm about an hour and five minutes in on that link), as well as on BBC TV News and Channel 4.)

So this morning we find that the government wants to make changes to the way we decide which children have special educational needs. And it wants to shift responsibility for providing the additional support these children require.

In a nutshell, the government believes that fewer children should be labelled as having special educational needs -- on the grounds that good teaching and pastoral care can provide what is required for many. The government also believes that parents whose children are actually classified as having special educational needs should be given a personal budget to go and get the support their child needs.

Frankly, anything that makes the system simpler is to be welcomed -- at present it's Kafkaesque.

But the proposed changes make me worry.

They make me worry that the plan to reduce the number of children categorised with special needs will make it even harder for those who do genuinely need help, to get that diagnosis or classification. We waited five years for a diagnosis of autism for my daughter, and now two years after that diagnosis we are still waiting to see whether, on our second attempt, we have successfully gained a statement of educational needs. My ten-year--old daughter is bright and articulate and funny. She also cannot tell the time, use money, or understand social cues. We are often told that our problem is that she doesn't "look disabled."

The proposed changes also make me worry that children who are not classified as having special needs under the new system will not get the support that the government claims they will get by way of better teaching and pastoral care. The provision of good teaching and pastoral care is entirely random in schools as it is, and in many places is getting worse as budget cuts are forced through. Who is going to pay for the good teaching and pastoral care that the government is now promising to children who are pushed out of the category of having special educational needs?

They also make me worry that being handed financial control of their child's SEN help will put an additional burden on parents who have got their hands full dealing with often distressed and difficult children, as well as trying to hold down jobs and meet the needs of the rest of their family, in an environment where disability living allowance is already being cut and employers' patience is worn thin by the demands of business in a difficult financial environment. I worry that in particular this will push even more mothers out of work -- if they haven't already had to do so -- in order to stay at home and organise care and balance the books.

And they make me worry that, when it comes down to it, the basic problem will remain the same. What's the point of handing over a budget to parents when there isn't enough money in it to actually pay for anything and when local resources are so stretched that even if you do have the money you'll have to wait eons until the one or two beleaguered support workers available can make time for your child among their towering caseloads?  So much of the difficulty we've had has come down to money. There isn't enough of it. There aren't enough people -- special advisors, support workers, teachers -- or training programmes -- because the resources have already been so badly cut. And these changes don't speak to any of that.

I talked a bit about this on BBC London Radio this morning. I was due to talk a bit about it on Sky News last night too but at the last minute they rang to say they wanted someone else instead, someone who "looks disabled."

Here we go again.

You were there all along

All those years, and it turns out we weren't alone after all.

All those months of perplexed unhappiness and that strange, floating feeling of powerlessness. The weeks and days of crying, and holding my daughter when she cried. The hours of railing against the system.

But most of all the waiting. Oh, the waiting.

According to a survey to be published by the National Autistic Society (NAS) later this month, more than a third of families wait at least three years for their child to be diagnosed with autism. Two-thirds wait more than a year. One in 10 people end up paying for assessments privately.

It took five years to get a diagnosis of Asperger's Syndrome for my daughter. Five years from her nursery teacher's first raised eyebrow and questioning comment, to the final affirmation over the phone from an uncomfortable doctor. Five years of knowing that there was something different about her, something that was starting to make her alien and noticeable among her peers, while so-called experts umm-ed and aah-ed.

The NAS survey, cited by the Observer newspaper today, said 61 percent of those surveyed felt relieved to get a diagnosis, and 58 percent said that a diagnosis led to getting more support. 55 percent said the process was long and stressful.

The article also quoted Dr Judy Gould, whose research with Dr Lorna Wing established the concept of a spectrum of autistic conditions. Gould told the newspaper: "I'm not at all surprised by these findings. We're seeing an increasing number of people coming forward, especially women and young girls, who have gone through their lives without a diagnosis and suffered quite badly as a consequence, some developing mental health issues."

For my daughter and me, the length of the wait for a diagnosis was compounded by the eternity we subsequently waited for educational and emotional support. We both suffered mental health issues. My bold, beautiful Amazon  -- tawny eyes, flying hair, quick mind and nimble fingers, who was always writing and drawing and dancing and striking poses -- shrank and faded before me. Bullied at school, she cursed her uselessness, as she saw it. I watched and despaired and berated myself for failure. In what I have since discovered is not an uncommon reaction, I cut off all my hair: a gesture of mourning, and an attempt to assert control where I still could. My daughter kept returning to the fray each day. I took up long-distance running, and made myself strong, and I fought for her.

And I wrote about it. Over the last year this blog saved me, helped me to make sense of our experiences by framing them and sharing them with friends and new readers, many of whom subsequently also became friends -- companions in my grief and frustration and co-celebrants in success and happiness when they came again.

These days, my girl is restored to herself, mostly. She has the help she needs, mostly. Our bruises are fading. My hair is growing again.

I haven't written this blog for several weeks now, wondering what direction to take now the hardest battle (I hope) has been fought and the marathon I trained so long for is completed. I've watched Grace and delighted in her. I've relaxed and celebrated and enjoyed feeling lazy. But I've known throughout that Grace and I are both changed by our experiences and that there's no going back to 'before'.

Then I saw today's article. This month marks the 50th birthday of the National Autistic Society. It is 50 years since a group of parents sat down around a kitchen table and decided to set up a support network for their autistic children. Those parents, and the charity which they established, are also the reason I have never really been alone throughout the worst times. They are the reason I can't just stop agitating for change and greater awareness now. I can no more stop campaigning and fundraising and running than Grace can stop being Grace.

So -- onwards. There is work to do. But the celebrations should continue. My child -- our children -- bring delight and a different perspective that benefits us all. So let us cherish them and champion them and marvel in them.

Happy Birthday, NAS.

Who else wants to join the party?

26.2 miles

When I think about Sunday, April 22, the first thing I think of is the noise: the boom and clamour of the crowd all around, as if I were caught in the centre of a rolling wave that hurled me along and along; the whoosh and thump of my heart behind my eyes and in my ears; the steady one-two-three-four of my breaths, matching my stride; and behind it all a whisper, an insistent murmur behind the din and the hot roaring pain that came later, a voice that said: Grace, my Grace, my girl.

The night before the race I travelled to my sister-in-law's flat, a tiny fairytale garret at the top of an old Victorian house, that looked out over south London and the start line, fifteen minutes' journey away. All that day I had been distracted and quick-tempered, pretending to be a participant in Saturday family time while ticking off the hours in my head before it was time to leave. When I could finally go and pack it was a relief, even though, checking and folding my clothes, I felt more as though I was preparing for the executioner's block than the winner's podium. It took an age to pin my running number onto my vest -- my hands were shaking so badly that I fumbled the safety pins and pricked my fingers repeatedly. When I came downstairs to say goodbye to everyone the children stood awkwardly in the doorway, half-turned to run away and play again, half-aware that something was expected from them in this moment. A good luck card was produced. I hugged and kissed them all and bent to pick up my kit bag and then Grace was in my arms again. Voice muffled in my chest, she said: "Do this for me, mummy." I held her out from me to look at her face, ready to say something light-hearted and reassuring when, solemnly, she raised three fingers to her lips and held her hand out in salute to me, mimicking the gesture of love and respect used by her new heroine from the Hunger Games. It was so Grace: dramatic and funny and sweet, and heart-breaking.

That night I slept badly, tossing and turning for hours on the edge of nervous dreams that threatened to throw me into wakefulness. I rose at six, ate porridge and brushed my hair looking in the mirror at my terrified face and listening to the radio, which seemed to be playing in another country -- who were these people who could laugh and joke and comment on the lovely weather, preparing for a relaxed day of newspapers and walks and roast dinner? Outside the sky was clear and I walked down the hill towards the train station alone and in silence, avoiding Saturday-night piles of sick and litter. At a bus stop a woman lit up a cigarette. Then I turned the corner and there were loose knots of people with red race-day kit bags, waiting for the next train. Among them was a friend and fellow runner for the National Autistic Society. The tightness in my stomach loosened.

I don't remember very much about the start, except the mass of people around me and in front of me and behind me and the calming voice of my friend, who had done it before, and kept me distracted with stories. Helicopters buzzed overhead and cameras turned on us and a voice on a tannoy urged us to repeated cheers and whoops as we waited awkwardly, nervously, for the countdown to the start. Then there was a walk, a shuffle, people bouncing on their toes, discarding jumpers and waving goodbye to friends and somehow I'd got to the start line, a huge arch bright red against the blue sky and the pliant mesh of the timing board spongy beneath my shoes, activating the chip tied into my laces, and I was running.

Almost immediately the crowd was there, still modest at this point, strung out like beads along the barrier, sending us good luck and smiles as we set off. We passed an elegant Georgian home in the garden of which two young people on brass instruments puffed out a slightly melancholy version of the Rocky theme tune. I found myself pacing behind a purple Teletubby and in the time it took to puzzle his name -- what was it again, was he Po or Tinkywinky? -- I realised the first mile was done and I was running the marathon and bobbing along in the centre of a crowd all streaming forward in glorious colour and purpose. For the next few miles we passed several churches which had opened their doors to bless us and cheer us. In front of one, a vicar swung holy water, sending droplets arcing out over the shifting mass, and we raised our hands back, a communal thank you of hundreds. Then there was a choir and a band, and then another band, and then a string of pubs all open, with people dancing on wooden tables outside and waving at us.

So the miles passed. We came to our first incline and as one we all bent, and suffered just a very little bit, and turned to smile with relief at each other as we came over the brow. I found my pace with ease, checking my watch now and again to make sure I wasn't going too fast, or too slow, and finding every time I checked that my body was now automatically doing what I had trained it to do all those months and was carrying me forward with ease. A bit of me floated away and just watched the carnival around me as I progressed. Then the route turned right, and we all turned right and suddenly in front of us was Tower Bridge and I'd run twelve and a half miles and was passing under the grey turrets and the crowd was going crazy. Down along the highway the crowds were deeper and deeper -- three or four back from the barriers and screaming and shouting. It was a huge effort not to speed up, for I was loving every moment, grinning like a loony, knowing that my family were going to appear at any moment at mile fourteen, where the National Autistic Society had organised a cheering point. I ran with my neck craned, seeking out the purple and white and red balloons and banners and feeling goose bumps running up along the back of my neck in anticipation. And then there they were -- only on the other side of the barrier where I couldn't touch them -- so I yelled and jumped up and down, pumping my arms in victory and blowing kisses and the roar that went up was for me, for me and for Grace and for us all and as I ran away from them all I was overcome and saw the route ahead of me blurred for a while.

When I came to again it was mile fifteen and something wasn't right. Before I had time to realise what was bothering me I felt a hand on my shoulder, the runner behind me directing me to a voice in the crowd to my left. It was my friend and former running partner Karen, who had started with me nearly a year ago, puffing and blowing and swapping stupid jokes with me on those first training runs as we contemplated our first half-marathon. I shrieked with joy and ran to her and she grabbed me. Both of us wild-eyed and teary, we exchanged kisses and loving words -- none of which I can remember now -- and then I was running again, careering forward in a state of such massive emotion that I'm amazed, thinking of it now, that I didn't spontaneously combust on the spot.

By sixteen and a half miles I'd figured out what wasn't right. The pain in my back had bloomed again, despite those weeks of enforced rest and expert osteopath attention, and the first corresponding shivers of pain were sending feelers down my right leg. A swooping downward lurch of panic hit me. I tried to shake it off and keep going but the pain was building very quickly and with it, my distress.

So I did what you do when the going gets tough and the tough need to get going: I went for a wee and a think, veering off the course to where a line of portaloos stood and barricading myself inside one to shut in my panic. There, in the dim blue light and the animal smell of other people's fear, I chewed painkillers and took shaky breaths and thought: how do I do this, how do I get going again. The murmur told me: Grace.

So I came out and I started running again, only I couldn't. I told myself I would walk half a mile and then try again. I counted down to seventeen and a half miles and started running again. But the pain built up again, so I walked and hobbled, pushing out thoughts of failure and ashamedly hoping that no-one would see me walking, and then I forced myself to run again. By now I'd passed the eighteen-mile mark and there again was Karen, yelling at me from the barricades. Sagging with relief and self-pity I went to her and fastened myself around her neck and told her, choked, how much it hurt. She hugged me back tightly and told me how well I was doing. Around us the crowd looked at our embrace and looked at my face. Arms came out and patted me and told me I could do it. A blur of faces pushed into mine and said, come on, come on. Karen released me back into the flow of runners and I found my pace and ran again.

The next three miles were misery. At this point the route had taken us into the heart of Canary Wharf, all hard-faced glittering windows and no progress: we wound around and around, marking time and miles until we could be released back towards the centre of town and the final stretch. But not yet, and not yet, and not yet. We passed restaurants and wine bars and offices -- including my own place of work, an incentive to run straighter and a bit faster, no matter how much it hurt -- and here the crowds shouted for Toby and Robert, and yelled "Come on old man!" and rugby shouts of "Whoooooarrrrrgh!" for confident young specimens who strode out and overtook all around me.

Then, thank God, we were released, leaving the glistening maze behind us and heading back out towards my family and friends and the NAS crowd of supporters who I knew were all waiting at mile 21, scanning the crowd anxiously, their gazes turned so far out into the mass as they searched for me that they jumped when I came up the inside lane and whooped in their faces. Ecstatic, I did a little dance and they laughed, and grabbed me. My parents and sisters, tears in their eyes, clutched me. My husband leaned forward for a kiss and Betty and the boys -- hot and sticky -- smiled and put their hands out to me. And there was Grace, smiling and kissing me and asking me: "Why are you crying?"

At that point I thought I'd done it. Leaving everyone I loved behind me with a wave and a promise to see them at the finish, I thought I'd cracked it. I ran on, back along the highway -- the roar building to an astonishing pitch -- and into Blackfriars tunnel and an incline to the Victoria Embankment. As I bent into it the pain in my back came over me in a huge wave. For a panic-stricken moment I thought that I was going to be sick or black out. Breathing, concentrating, I emerged from the tunnel sandwiched in the middle of the staggering pack, to an immense crowd screaming encouragement. A sign told me I had only two and a half miles to go. Around me I could see runners smiling through their exhaustion and managing a final spurt. But all I could manage was a hobble, a limping half-walk, and then a walk -- biting my lips not to cry in front of all these people. My watch showed that I still had twenty minutes before five hours had passed. I walked as quickly as I could bear to, hoping to ease out the pain enough to pick up a run again, and started a distracted, frayed conversation with a similarly wrung-out runner alongside me.

At the corner of Big Ben I turned and saw, if it were possible, an even bigger crowd. I started running again, unable to bear the humiliation of walking in front of so many, despite being almost cross-eyed in pain. The route turned into St James Park and along Birdcage Walk, and while my mind was yelling at me to stop, it was also registering dimly that this was nearly the end. A sign said 800 metres and I nearly threw myself down on the floor at the thought of how far I still had to go. But then I turned and there was Buckingham Palace and the Mall and people were ten deep at the barricades, hanging off lampposts and thronged, waving, in the fountains and there was no way I could stop in front of them all, so I plodded on, weaving and bent, and there in front of me was another red arch like the one I had gone through nearly five hours ago. The clock on top of it said four hours and fifty-four minutes. I headed for it and was aware that I was smiling, that we were all smiling, and that it was nearly the end.

I crossed the finish line and raised my arms intending to make a victory gesture but found instead as I slowed to a final stop that I was clutching my head and weeping. Wiping my face with sticky hands, I followed lines of shattered runners submitting to the attentions and directions of race officials. A young man removed my time chip from my shoes while a woman strung a medal around my neck. In a daze, I collected my kit bag, slung it over my shoulder and started out into the crowds again to find my daughter.

Grace Under Pressure: Going The Distance as an Asperger's Mum is published by Piatkus in October 2012