Facing up to Asperger's: Grace and Sophie's story
When Mumsnet blogger Sophie Walker's daughter Grace was diagnosed with Asperger's Syndrome, she turned to running to stay sane and blogged her progress. From securing a Special Educational Needs statement to tackling Gove-levels, Sophie was determined that nothing would stand in her daughter's way. Now Sophie's recorded Grace's journey in her new book Grace Under Pressure - and it makes for extraordinary reading.
Sixteen months ago I started a blog. I had no clue what I was doing. Formatting, type-setting, inserting pictures and links was a clumsy undertaking and one I frequently hashed up. I used too much pink. I relied very heavily on templates.
But the words – the words came easily. For months I had been jotting down thoughts into a scrappy notebook during my daily commutes, my pen bouncing as the tube carriage rocked along. It was the only free time I had and I was desperate to impose some order on the worries going around inside my head. Then I thought: why don’t I put some of this online and see what other people think? Maybe I’ll feel less lonely, I thought. Maybe I’ll figure out what to do next.
My daughter had just been diagnosed with Asperger’s Syndrome. Grace was having a wretched time at school, bewildered by many subjects and taunted by classmates fascinated by her eccentricities. She would come home in a state of high distress. I would try to help and make things worse. We loved each other. We didn’t understand each other. We battled over everything.
When I suggested to Grace that I write about what we were going through, she said: “Yes please. Try to get people to understand.” Around the same time I started running, trying to stabilise my precarious mental health. I signed up to run the London Marathon and raise funds for the National Autistic Society.
My blog Grace Under Pressure took off. People read it and recommended it and urged us both on. My battle with the bullies, with the local education authority, with the training regime that demanded 15-mile runs regardless of the weather or how I was feeling, caught readers’ imagination. A friend suggested I talk to a literary agent. The agent liked my writing and showed me how to create a book proposal: synopsis, first three chapters, target audience. Several publishers were interested. Piatkus, an imprint of Little Brown, bought it and helped me through the process with expert care.
My book is out today. Grace is very proud.
“It's a small piece of paper. A bit crumpled around the edges. Beige. The handwriting is careful: sloping letters linked by curls at the bottom of each one, done with the care of a child just learning to join them up. Looking at them, you can imagine the tip of a tongue protruding as the author presses down with the brown felt tip pen, leaning a little to the right. It would be perfect, but that the exclamation mark has been smudged.
Grace brings it to me in the kitchen of our home. She is white-faced. She holds it out to me and tells me that she has just found it in her schoolbag. I watch a torrent of emotions chase across her features. She laughs, then frowns. As she turns to me she is angry, uncertain, disbelieving. I read the note and look up at her and open my mouth to speak.
Then: fury. Flinging herself at me with a howl of pain she snatches the note from me and tries to pull it to shreds while rushing back across to the bin on the other side of the room. I run after her and turn her to me, grabbing for the note, hating it but wanting it and needing to preserve it, thinking fast: I have to show this to the school tomorrow, she mustn't destroy it. My daughter's face is a mask of anguish. I hold her to me. She is hot, raging, sobbing. She smells of fresh laundry and school and hormones and pain. She recounts another huge row at school, the one with the horrible child, the one that got worse and worse until she lashed out. Her voice is muffled: she speaks into my chest, hiding her face in hurt and anger while she tells me how she stamped on his foot and pushed him.
Then we have the conversation. The one we both hate, and know by heart.
I tell her that I love her, and will do everything I can to help her, and that I know how hard this is. Then I tell her that as soon as she touches or hurts someone then no matter what they have done, no matter how they hurt her feelings, no matter that they laughed, or poked, or whispered with others and narrowed their eyes -- no matter any of this, it's game over when she hits them.
She breaks away from me and screams and stamps her feet and shouts at me. “They're stupid, they're horrible, they've all got it in for me.”
“Listen,”I tell her. “We all have jobs to do. Mine is to look after you and to sort this out, to talk to the school and make sure they fix this. Their job is to stop the bullies and to protect you in class. You have a job too,” I tell her. “Your job is to count to ten and walk away. You have to try.”
“I can't help it,” she throws back at me. She is calmer now, but still red in the face. Her hair stands out from her face in teary furious knots. “I've got A- A- Aspergers –“ and she is sobbing again. For a moment neither of us say anything.
My daughter looks at me. “What is the point of me,” she says flatly.
I force a smile and tickle her cheek and pull her to me. I tell her all the wonderful, marvellous things that are the point of her. I fold her in a warm hug, but inside I shiver.
Later that evening she comes down from her bedroom. I have just finished writing a long letter to her headmistress and I am sitting on the sofa listlessly watching a mediocre film.
Grace appears in the doorway in pink rumpled pyjamas, the eyemask she needs to wear pushed up onto her forehead. She looks soft and pink and very very young. She says to me: “I've been thinking and they're right. I am mean. I shout at people. I wish I wasn't here.”
I think of the run I failed to get up and do this morning, the strength training session I failed to do a few days ago and I remember what the point of it all is and I am heartbroken to have been given this kind of reminder. I am frightened for her, and I am frightened that I can't fix this for her.
We curl up on the sofa and eat sweets and eventually start to giggle occasionally at the silly film. For a blissful while we are just us two, mum and daughter and she is just a nine-year-old who can't quite mask a fleeting smirk when I say that yes ok she can stay up a bit later. I would give anything for it to be just this, and only this.