Monday, 14 April 2014

Don't give up. Ever.

Thank you to everyone who supported me: family, friends, Twitter followers and Facebook chums; fellow runners and complete strangers; everyone who urged me to keep putting one foot in front of the other; who sent love and gave me the certainty that I could do it because they believed I could.

Together we have raised a huge amount of money for a wonderful charity that helps children with autism thrive and achieve. And we have shown one girl, again, that we stand with her, and will  keep going with her, even under pressure.

Monday, 7 April 2014


I'm sitting in the doctor's examination room with my trousers off. Her neat, careful fingers are probing the soft area around my kneecap.

I watch her, and think: "Please tell me what to do."

She straightens up and says: "Well, I can't tell you what to do."

Then she says: "I don't think you'll be able to make it round."

Then she sees the look on my face and says: "You could start it, and just do a bit."

Then she looks at me again and says: "Or you could walk it."

I am struggling not to cry. I am struggling to replace my 'oh fuck' face with something blander and more grown-up. I can tell by the way my GP is looking at me that I am failing miserably.

For the last fourteen weeks I have thought of nothing but running this marathon. For the last three weeks I have thought about nothing but whether I can run this marathon after all. I have obsessed, every moment of every day, about how much my knee or my back is hurting me and what this means for my prospects of running.

My injuries have taken it in turns to torment me. For days, nothing. Then - a dull, nagging throb. Then - bam, a zinging trail of pain all the way up the side of my leg, or across my back. For a while, I couldn't figure out which was worse. Right now, my back is quiet while my knee, sparking and pulsing, makes stairs and hills an uncomfortable forecast of what awaits if I attempt to put it through 26.2 miles in six day's time.

Six days. I've trained for 14 weeks and now with six days to go I have to go right back to the start and figure out whether I'm going to do this.

I ask my doctor: "What about a steroid injection? What about really strong painkillers and sports tape? Can you give me enough stuff just to make it around, and then I'll rest it?"

She looks at me, a wrinkle of doubt in her nose.

"I can give you very strong anti-inflammatories that will help. I can give you very strong painkillers that will stop the pain. The thing is, if we do that and you run on it, then you won't know how much you'll be damaging it. You might find that you can't run on it again afterwards."

I gape. "What - ever?"

"Well.. for some time," she answers.

I think about not running the marathon, and I feel sick.

I think about starting the marathon and running a few miles and having to abandon it, and I feel sick.

I think about starting the marathon and running a few miles and then walking the rest, for hours and hours, past all the crowds of people cheering and yelling everyone on, and feeling such a fraud and a loser, and I feel sick. I think about limping down Birdcage Walk seven hours after the start of the race, to see the crowds have melted away, and the litter blowing in the breeze, and I feel sick.

I take the prescription from my doctor and I walk home. As I walk I think about the huge amount of money that my friends and family have pledged for me, have promised in support of a wonderful charity, Ambitious about Autism. I think about the work they do, and I think about the amazing school they run. I think about the day I visited, as a new patron, and watched a little girl - outnumbered as ever by the number of boys with autism - in her class, quietly bending to a task with a smile as her worker sat beside her. I think about my own daughter, who doesn't get to decide that she can't have autism today, sorry. I walk and I think and I think.

By the time I get home I've decided.

I've got a place in one of the biggest and best races in the world. And I've got a vest that says I'm part of a team of people who are ambitious about making things better for children who have autism.

I'm going to start the race. I'm going to pass over the start line to say thank you to everyone who sponsored me, and to say, to my daughter, I'm with you. And then - we'll see what happens. Maybe luck will be on my side and I'll make it to the finish line. Maybe I'll have to go home after three miles. Either way, I'll have been part of it, in some way. It's enough.

My new training plan.

To support me, and support Ambitious about Autism's aim to help children with autism learn, thrive and achieve, please click here

Wednesday, 2 April 2014

On World Autism Awareness Day, an invitation to the teaching community

Right now, in many countries, lots of young girls are getting ready - with great reluctance - for school. They are getting dressed and brushing their hair, while their stomach knots with apprehension. They are fastening shut their schoolbags and putting on their blazers. They are moving very slowly, putting off for as long as they can the moment when they have to leave.

Later, when they come back, their parents will ask how their day at school went. Some of these girls will say nothing. Some will say something. Some will shout. Some will throw things, or hit someone.

Many of them will go quickly to their bedrooms, to a safe place. And there, when they are alone, one or some of the following things will happen. They will cry. They will make themselves sick. They will cut or harm themselves, until they bleed and feel better. They will do these things again and again.

The parents may know. They may not know. They may find out now, or they may find out later. When they find out, they will most likely go to the school. They will likely say: "Please can you help us. Our daughter finds school very hard. She has autism."

They might add, by way of explanation: "The stress of the social environment - the noise and the scrutiny and the rules - along with worry about grades/friendships/bullying/ is making her ill."

When this happens, here's what the school will say:

"We are very sorry to hear that. Let us work together to get your daughter the support she needs."

Actually, that's not true. Or at least it's so rarely true that it's not the story I'm going to tell here. Here's what the school - the headteacher, the teacher, the head of year, the special educational needs co-ordinator - more often say instead (and these are all examples of what they have actually said to some of the many parents of girls with autism that I talk to):

"Well, she's fine in school, so it must be a problem at home."

"She needs to be less sensitive/get a thicker skin/toughen up a bit."

"She needs to learn to shut out distractions."

"She brings it (the bullying/the stress/the tears) on herself."

"It's better that she doesn't tell anyone she has Asperger's Syndrome. It will only make things worse."

"There's no point applying for a statement of educational needs/extra teaching support because she won't get it. She's fine in school, you see .."

This time last year, on World Autism Awareness Day, I wrote this blog about the process I had undergone, following my daughter's diagnosis, of learning to understand and be fully aware of autism.

This year, on World Autism Awareness Day, I would like to extend an invitation to the teaching community to do the same.

Teachers, particularly in Britain, are under a lot of pressure. Bureaucracy and paperwork and targets and endless new demands, combined with cuts to pensions and salaries, and the morale-sapping decline of respect for their work, are causing droves of teachers to leave the profession. Many of those who stay are wondering how much longer they can stick it out for.


Teachers have a responsibility to understand the children they are teaching, even if just a little. They have a responsibility to promote tolerance and acceptance of difference. Pastoral care is not a 'nice to have' when it comes to teaching.

If you are a teacher you should know that autism rates are rising. The latest report on this, from America's Center for Disease Control and Prevention just last week, says that 1 in 68 children now have autism. That's a 30 percent jump in two years. It's not because vast numbers of children suddenly 'got' autism overnight, though there is certainly something happening to increase the incidence of autism worldwide. In part, these new numbers are because doctors are getting better and better at spotting autism, and diagnosing it.

If doctors are starting to understand and to see autism, shouldn't teachers?

My daughter goes to a great school with excellent support. We are very lucky. I know some fantastic teachers. One is my clever, sensitive sister, who recognised some of the symptoms of autism in my daughter while I was still a long way from understanding.

But there are unfortunately a lot of teachers out there who are not fantastic. There are a lot of teachers out there who do not know much about autism, and have no interest in finding out more. There are a lot of teachers who think autism is something that happens to other children, not the children who come to their school. Not the children they teach.

Let's change this. It's not that difficult. It doesn't require new tests, or benchmarks, or quotas. It just means reading a few things - like this, perhaps. It means applying empathy - yes, that thing that autistic children are supposed to be so short of. (If my daughter saw someone upset or in trouble at school it would never, ever occur to her to think that they must somehow have brought it upon themselves.)

It means making the job of SENCo - special educational needs co-ordinator, as they are called in Britain - and its equivalent elsewhere, into a job that is valued and important, and done properly, rather that the thing that someone does one day a week, or the role that gets given to the teacher who's killing time before retirement, or the job that gets given to the teacher who's not very good at anything else but is too hard to fire.

All of the examples I gave at the beginning of this article were about girls for a reason. I'm not suggesting for a moment that boys with autism don't suffer at school too. But I don't have a son with autism. I have a daughter, and from what I see and hear from other parents of daughters, our daughters are suffering. They are suffering particularly hard. When teachers don't understand autism, they particularly don't understand girls with autism. They don't understand that girls are more likely to hide their autism, to copy their peers, to camouflage and keep quiet while they suffer. They don't understand that girls with autism are suffering serious mental health issues because of the strain of being taught by people who have no idea of what their lives are like or who they really are.

I don't claim this as the most important battle in understanding autism. But it is one we must fight.

And yet - it doesn't have to be a battle. We are the parents who are interested in our children. We are the parents who appreciate the importance of our childrens' educators, and the difference that they can make to their lives. Invite us to our children's schools, and we will come. Ask us to contribute to our children's teachers' efforts and we will. We already are. We have enough battles to fight already. So, by God, do teachers.

Awareness of autism starts with understanding how much we still don't understand about it, in order to learn what kind of support to give to those who need it. It's ok to say you don't know very much about autism, or how it can look different in boys and girls. Here's your chance to change that. Can we talk?

To find out more about autism and World Autism Awareness Day, click here

To find out more about how you can help children and young people with autism thrive and achieve, click here

Want to make a difference? Support me on April 13 and your money will go directly towards helping improve services for children with autism and spreading understanding and awareness of the condition.

Grace under Pressure: Going the distance as an Asperger's Mum, is published by Piatkus and available here