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

Here We Go

Peering through the rain-streaked windows of the train, my first sight of the ExCeL conference centre was of an uninspiring cement box with holes for car-parking punched along one side and a stupid name with jarring capital letters emblazoned on a series of signposts. I huffed, and alighted, and walked long the covered walkway to the entrance.

I had come to register my place in the London Marathon, to pick up my runner's number and race chip and kit bag, to sign my agreement to participate in front of a race official, to agree that On My Own Head Be It.

I was not in a good mood. With three days to go before the race, the city was under water: the seam between sky and land a blur of grey wetness. Rain bounced into muddy rivers everywhere as puddles bulged and spread. Cars splashed, bus windows steamed up and commuter's faces took on a pinched, besieged aspect. I thought about ironing my name onto a wetsuit rather than a running vest.

Walking into the hall I removed my hat and shook out my hair and looked up, to be confronted by streams of purposeful people striding out past me. Each carried a red plastic bag with the race sponsorship logo on it. I scanned their faces as each one went by: how would she do on Sunday? And her? And him? Office-workers and outdoor types, skinny students and apple-cheeked grandmothers -- I gazed at them all, wondering at this carnival of people who would all be pushing along the pavements with me.

Through a red archway was a line of registration kiosks manned by people in branded t-shirts. I took a step forward and trumpets sounded. I started and looked around. Strings soared and swirled. No-one else seemed moved. I paused and got my bearings and listened. Music was blasting out from speakers all around me, exuberantly welcoming the arriving runners as they entered the exhibition. I felt my scalp shiver, and gulped. Sucker, I told myself. Just go and get your number.

At the kiosk I was asked to hand over my passport as identification, and to sign a consent form. An old man in glasses presented me with an envelope, explaining which number went on my vest and which on my kit bag. I smiled and thanked him and turned to go, and as I did so he caught my wrist, and patted my hand with papery, arthritic fingers and said: "Have a good run, love. Have a good fast one." 

Next was a row of computer terminals where a woman checked my name for a second time, activated a timing chip and, beckoning me to hand over my bag, sealed it carefully inside before giving it back with a fervent: "Good luck!"

Blinking, I stumbled along and into the exhibitors' hall, to be presented with a wall of colour and scribble, asking me:

On it, competitors inked messages to one another, good luck wishes and words of love and encouragement spilling across the hoarding. Around us, promotional videos flickered and spun, a blizzard of noise and motion and toned athleticism, exhorting us all to do our best and live the moment while wearing the right brand of sportswear.

I got a glimpse of how Grace must feel sometimes, I think, when trying to process a busy street or noisy classroom, and fled.

In the next room the lines of stalls started in earnest. Tempted to buy a couple of t-shirts and tops, I paused, but then superstition urged me on -- what mortification awaited should I buy official merchandise and then not finish the race. I felt the bruise in my back, the injury like a warning, and walked on.

There were endless stands for clothes and shoes and underwear and sports first aid. One sold only bras, another nothing but injury tape (there were a lot of brave faces in that area.) Here was a large, bright stand advertising the Valencia marathon with a video of smiling people loping along in sunshine. Clusters of people stood around to watch it and collect pamphlets. Around the corner the Dublin marathon stand -- advertising itself as 'friendly' -- was quieter. Around the corner from that, the Munich marathon stand stood empty. A food stand followed, with wall-to-wall power bars, and a drinks stand where confident, good-looking people wore coats marked 'Lucozade Sports Scientists' and approached the crowds with clip-boards and a lot of brass neck.

Underneath a sign proclaiming 'I Am Made Of Determination Not Doubt' a worried-looking woman consulted a map and said to her partner: 'There must be a Nike here somewhere."

Around the next corner I discovered the massage zone -- a giant, fenced-off square of groaning rows of prone bodies swathed in towels. Technicians bent over them with busy hands, occasionally revealing a glistening leg or arm or shoulder. The rising fumes of Deep Heat made my eyes prickle and I moved away.

And then it was the end. Another big red arch leading back outside wished us all good luck. At the last minute a man darted out from one of the final stands and asked me: "Do you want a printout of your body mass index?" Er, no thanks, I told him. He pursued me, and asked: "Do you want to do some stretching?" Er, I'm ok there too thanks, I told him. He eyed me doubtfully and said "Well, ok.. Good luck."

Outside the rain was still pouring and hordes of people were now pushing in past me, the trains disgorging hundreds of scurrying figures come to register now the offices were closing and rush hour had started. I stopped and watched and contemplated the race to come and for a moment felt the purest thrill of fear.

Then I remembered how I would get through it, the message I had scribbled, standing on tip-toes to reach a tiny patch of white among the clamour of messages, the two words that would keep me putting one foot in front of another:

Grace Under Pressure: going the distance as an Asperger's Mum, will be published by Piatkus Books in October

See the funny side? Don't make me laugh

I am drying Betty after her bath with a giant cornflower-blue towel that exactly matches the colour of her eyes. She is giggling and twirling and wiggling, forcing me tiredly to reach and trap her and bind her over and over again in order to wipe away the remaining beads of water on her sturdy little body. I am so tired but this is the last job of the day and she is so lovely and so I hold my temper and keep going.

I let go of her to reach for her clean pyjamas on the radiator beside me, and she springs free, backing out of my reach with a mischievous twinkle. She bends, scoops the towel up and throws it over her head, then stands just apart from me, tottering under the heavy material, her laughter muffled, waiting to be claimed. I protest, and she peeks out from under it and beckons me in. I go closer and closer to her and she holds out the towel like an awning, a refuge, until I am under it with her, breathing in the heavy damp air that smells of her baby body and nose to nose with me she raises an eyebrow and I wait expectantly to hear what it is she wants and Betty asks me: "Want some cup of tea?" And the bubble of sour anxiety that I have carried inside me all day pops, just like that. I snort out a laugh and Betty joins in. We laugh and laugh and again I thank God most fervently for my baby, who makes me laugh and relax and forget for a while about my worries for my big girl.

When you have an autistic child everyone says you've got to laugh, or else you cry, but more often I cry.

Everyone says, you've got to have a sense of humour, but actually, increasingly, I don't.

Everyone says, come on, can't you take a joke, but these days, the answer is often no, I can't.

Most of the time I can pretend though, and most of the time I'm good at it. I have a perma-smile from years of practise and a whole range of artful poses: the smile and the nod; the half-chuckle; the sympathetic roll of the eyes; the "goodness, I know" moue of the mouth; the shrug that says "hey, what can you do?" I am diplomatic, and calm and I pour oil on troubled waters and I take deep breaths.

Sometimes I use these responses when other children bully my daughter and laugh at her and tell her their rudeness is her problem and I have to face their parents in the schoolyard. Sometimes I use them when the school phones me again to tell me of another incident and explains that Grace really must learn to react more calmly and that often what happens is her problem. Sometimes I use them when the local authority needs yet more paperwork and proofs and reports and appointments before they will help us and the problem of chivvying and collating and the burden of proof is my problem.

Today, I used them when a crap, so-called comedian made a crap joke about Asperger's on Twitter and then told me to fuck off when I objected. Tonight, I am using them as a television channel airs a programme about a person with Asperger's struggling to find love and calls it "The Undateables" and effectively tells me and all the other parents who fear daily for our childrens' fragile psyches to fuck off, if we object to the name of the programme, it's our problem.

Most of the time I use these responses because not to do this, to breathe calmly and shrug and smile, would make daily interactions virtually impossible. I do this because I have to keep going and I have to make people like me in order to get good results for my daughter. I do this because I refuse to allow myself to be infected by the small-minded meanness, ignorance and crassness that so often comes our way.

But inside, often, I am boiling.

Inside, it is very not alright, fuck you very much.

Inside, I am banking the anger and pressing it down until it is small and hard and hotter and more powerful and it provides me with fuel and drives me to make things better.

And then I will have the last laugh.

Grace Under Pressure: going the distance as an Asperger's Mum, will be published by Piatkus Books in October