One by one (by one, by one)

There's a small woman hopping up and down on my right shoulder. She looks a bit like me, but for some reason she's speaking with a gorblimey accent. She's leaning forward with an agitated air and saying into my ear: "Don't. 'E's not worth it. Walk away!"

I try to listen to her. I take a deep breath to calm myself. But it doesn't work. So I turn, and stride along the aisle, past eggs and dried fruit, in the direction taken by a young man a couple of moments ago. At the top I look left, only to see him disappear behind swinging doors into a staff-only area. I exhale, and square my shoulders.

"'E's not worth it!" hisses the mini-me again.

But I'm walking over to the door, beside which a senior-looking staff member is ticking things off a list. 

"Excuse me?"

She looks up. Beside us, an industrial-sized rotisserie splats and fizzes, turning rows of browning chickens.

"Yes?"

It's been a good weekend, so far. I've seen friends and relaxed and felt enthusiastic about things again. In slightly giddy mood I went to Waitrose and piled my trolley full of rich, tasty food, planning to cook a big meal for my family. I thought: I am nearly well, my loved ones are all well - Grace is calm, happy and productive - January is nearly over. Tick, tick, tick, tick.

Then I turned a corner and two young people, dressed in the supermarket's uniform, came towards me from the opposite direction. The young man -  jaunty walk, shoulders back - was just about to arrive at the punchline of a story that was already making his female colleague giggle. As he walked past I caught the end of his comment: ".. like a special needs one, you know? So you have to look after 'em!" His colleague smothered laughter. They walked on.

But I was stuck. A victim of a walk-by shooting in the bakery aisle. I felt like I'd been splattered against the shelves of finest organic flour. Someone was laughing at my daughter again. I felt sick and sweaty. I felt like I was overreacting. I felt like I wanted to run after that young man and shake him til his teeth rattled.

I looked at all the food in my trolley. I didn't want to eat any of it. Up popped the worried little woman on my shoulder - the one who fears being a spoilsport, a humourless, professional complainer. I batted her away. One by one, I thought. I have to keep tackling them one by one, until there are fewer people who think it's ok to make Grace an object of fun.

Thus, when the senior-looking staff member looks up and says "Yes?" - I say: "I've just overheard a member of your staff make a joke about people with special needs that I found offensive. Do you think I could speak to him?"

The woman blanches, and says very quickly that she will go and get the duty manager.

"It's just - " I begin, - "I have a daughter - "

She stops me and says: "Me too. I'll be right back."

I wait for five minutes. I still feel sick. Then two young men walk up to me. One is the duty manager, who looks very uncomfortable. One is the young man who spoke. His face is a perfect blank. He looks at me, and fixes a bland smile, and clasps his hands together.

"I would like to apologise for my comments," he tells me. "They were taken out of context."

Wait, what? Out of context?

"That doesn't sound like an apology," I retort. "Whatever is going on in your head you should not be voicing it here. Do you have any idea how upsetting it is to be here and shopping and overhear someone making a joke about that?"

Urgh. I am so very un-eloquent.

He smiles blandly at me again, and presses his hands closer together. His expression doesn't change.

"I would like to apologise for my comments," he says again.

Go on then, I think.

There's a pause.

"I have a daughter with autism," I tell him. "And I'm sure I'm not the only person in your shop right now who is living with someone who has special needs. Do you have any idea what my home life is like?"

Double-urgh. Why one earth did I say that? Why can I not explain such an uncomplicated thought. Use your words, I tell myself, as though I am four.

The duty manager is still silent. The other man smiles blandly at me again.

"I would like to apologise for my comments."

Oh, enough.

"Ok then," I say tiredly. "Thank you. Please don't do it again."

I walk away and I don't look back. I think: I don't think I did that very well. I think: That was embarrassing. Then I think of Grace, and I think how glad I was that she wasn't with me, to overhear someone walk past and mock her so blithely.

One by one. It doesn't matter if it doesn't always come out right. It just has to keep being said. Until maybe, at some point, we don't need to say it at all.


Postscript: On Monday Jan. 26 Waitrose contacted me at home after seeing this post, widely circulated on Twitter. A spokeswoman said: "These kind of comments are not expected and not allowed. We will be contacting our learning and development department to comment that this has been happening, so it can be incorporated into future programmes, and a team sent out to reiterate our policies."

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.

But.

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