That elephant in the room? It has a right to be here too.

It's Saturday morning.

Upstairs the teenagers are still in bed. Downstairs, my youngest child - tangle-haired and barefoot - draws at the kitchen table. Outside, the birds are singing and bouncing on the blossom-fat branches of the apple tree. Inside, the rolling burble of the boiling kettle rises.

I spoon coffee from a jar, and close my eyes and breathe. And smile.

The half-term holiday is here. Thank God. 

Grace has got through another term. Last week we went to parents' evening. Teacher after teacher smiled to see my beautiful girl - who has grown now to stand shoulder to shoulder with me - and teacher after teacher shook my hand enthusiastically. We went home beaming. Grace's report card had 'excellent' on every line.

She is exhausted. Pale with the strain. She will no doubt sleep until lunchtime if I let her. But she has done it. She has overcome real hurdles. There has been hurt and difficulty, again. Young people are often not kind. Adolescence is not kind. A learning environment tailored to other people's strengths is not kind.

But she has done it.

I make breakfast and chat with Betty. When she has finished, and slipped off her chair to go and potter upstairs, I pick up my phone and start to flip through the newspapers.

One of the first articles I read begins: "Keeping children with special educational needs in mainstream schooling can deprive them of expert care - and their classmates of a decent education."

Don't read it, I think. Don't read it. You don't need to read it.

I read it.

The article is written anonymously. (Of course it is. These are the rules of social media now. Be daring, be divergent, but above all be undetectable. God forbid you should take responsibility for your own shitstorm.)

The unnamed author is a teacher. The teacher writes that our country's insistence on 'inclusion' in schools means that we are turning a blind eye to the elephant in the room, which is (I am summarising) that we're not actually including children with special educational needs because their needs mean that they are not undergoing the same experience as everyone else on the premises.

Furthermore, the 'normal' children on the premises are at best disadvantaged and at worst scarred by having to share their education thus.

I feel like I've been punched in the stomach. But then I get to the comments at the end of the article.

There is a lot of praise for it.

"How many parents of SEN children are actually deluded or just plain ignorant of the pros and cons of 'inclusion' and insist on a right which may suit their own prejudices rather than the wellbeing of their child?" is one comment.

Another asks: "Why are we investing in a full time staff member to control the behaviour of a child who is basically uneducatable?"

That prompts helpful advice from another quarter: "Being able to remove the troublemakers and have them educated in specialist units better suited to them would make a vast difference."

I can't bear it, and I write an online contribution saying how sad I am to see parents and teachers at loggerheads again instead of supporting each other in a system that puts both sides under intolerable strain.

I get an answer back explaining the teachers are fine, it's the parents that are "ignorant, self-entitled and pushy." 

I sit back in my chair and exhale, a bit shakily. I wonder what to do. I should walk away. Put down my phone and go and shower and move the day along from this. But walking away isn't an option for Grace. She will attract this crap her whole life. So I can't walk away either.

The problem is that inclusivity requires three things: money, training and tolerance.

Right now the education system is thin on all of those.

I sympathise with teachers who are struggling to teach classes of 30 children or more with limited resources and little appreciation. I sympathise with parents whose children feel uncomfortable around or frustrated by the child in their class who is not like the rest of them.

But what, exactly, is it that Grace and I are supposed to do?

Are we supposed to just shuffle off?

Do any of these people think we enjoy feeling forced upon the system?

Do they think we're just brazening it out for the hell of it? That I greet Grace at the door every night with a high-five and a "you go girl, how many people did you piss off today?"

I'm not ignorant, or self-entitled. (I'll admit to pushy, but needs must.) I had to learn a lot about autism, fast, when Grace was diagnosed. I had to give up all expectations of the life to which I had thought myself entitled, and learn instead to go what I'd been given.

I work hard with my daughter to teach her to cope in a world that frequently overwhelms her. I work hard to help her to control her anxiety, try to make eye contact, think of appropriate conversational responses. I have taught her about considering other people's feelings. She works harder than I do. She tries and tries and tries. The onus seems permanently to be on her to fit in with the rest of the world, while the cruelty and impatience of the other children (and some of the teachers) is accepted as just the way things are.

Talk to most parents of a child with SEN struggling in a mainstream school and they will tell you that too often the teachers are at best overworked and at worst untrained yet convinced they know better, while the parents are not listened to and their child blamed for class distractions and turned upon by their peers. 

Thousands of parents choose to home school rather than go through all that. Others manage to get their child into a specialist unit. But most of us struggle on, because we have to pay the mortgage, so opting out of the world of work is not an option any more than finding a different school when getting a statement of educational needs is like panning for gold and the specialist units are few and full anyway.

People may write that mainstream education is not the best option for my daughter. 

But what if it's the only option there is?

If mainstream education, as messy and difficult as it is, really is the only option for most of us, then perhaps we need to consider it differently, while we campaign for more money and more training? (We shouldn't need to campaign for tolerance. But many of us do.) 

Inclusivity isn't easy. We all talk about it as though it is, but sometimes it really isn't. It can be hard to welcome all, and embrace difference. That's ok. We just have to keep doing it until it doesn't feel uncomfortable. 

Because teaching children to pass exams is not the only reason for them to go to school.

Children also go to school to learn about the world.

And the world is diverse.

Society flourishes when it embraces the diverse. Society is fairer when it listens to the people within it who think differently.

So let's think differently, and flourish. 

Together.



My book Grace Under Pressure: Going the Distance as an Asperger's Mum, is published by Piatkus and available here.

In November I will be running the New York Marathon to raise funds for The National Autistic Society, which campaigns for better understanding and support for people with autism and their families.  These days there are lots of voices calling for charitable funding, and many people running, cycling and swimming to show their dedication to a cause. Grace and I would be most grateful if you would pick us out among that worthy crowd and show us your support here.

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."

School trip

There's no-one else in the pool this morning. The rain has stopped and the morning sky is fine and clear, so the other early swimmers are filing past me to exercise outdoors.

I barely notice them - glimpses of feet in flip flops that appear briefly at my eye level and disappear again as I emerge and submerge, furiously propelling myself down the silent blue lane marked out in orange ropes in front of me. I want to stay indoors. I want to be alone.

This morning my girl departed on the school trip. It's a common enough event at this time of year. I wonder how many other parents are experiencing it right now. From those early spring evenings at the school receiving instructions from calm-voiced teachers, to the rather more urgently phrased summer letters home detailing travel times and required packing; the last week watching your child get progressively excited; the list making. The departing shot: "Don't worry about phoning - but do let me know you're ok!"

Push, dive, kick, breathe.

What must it be like, I think as I swim, to wave off your child with just a flicker of manageable worry - a normal parental twinge? What must it be like to see your child laughing with their friends, shoving excitedly on to the bus in a safe gaggle of chums, then sitting draped over each other, firing jokes back and forth with bright eyes and big grins? What must it be like to go back to your car with just a small tremor of sadness, knowing that by and large your child will be fine, will be happy, will have the time of their life and will come back full of tales of happy gang exploits?

What must it be like, at this event, to be the parent of a child who does not have special needs?

Push, dive, kick, breathe.

I force the air out of me and watch the anxiety-laden bubbles stream past me under water, imagining their acrid pop on the surface. I breathe harder and swim faster til I can feel the muscles taut and burning along my arms and shoulders and thighs and calves. Embedded in the rhythm of my stroke is a silent chant: Please let her be ok. Please let her be ok. Please let her be ok.

I tell myself she will be. She is brave and resourceful. She is glad to be going. She is excited. And the condition that means she will need extra help, that requires extra support and understanding, also has its own defence mechanism: she does not see many of the things I do. She did not see, this morning, how her classmates' eyes slid away as she approached to say hello, how the girls she saluted cheerily exchanged carefully flat glances at one another and replied in non-committal monotones. (I saw, and it was like being rabbit-punched in the throat - a moment of winded, gasping pain which I could not indulge. Instead I smiled brightly at my daughter and the dead-eyed girls edging away from us.)

A bit later I watched her sitting in the coach, a little stiffly, possibly a bit nervous and working her way through the feelings arising from the noise and the excitement in the air around her. I wanted to jump up and down, cross my eyes and stick my tongue out - make her laugh, and relax. I didn't do any of those things of course. She would have been mortified. So instead we looked at each other silently either side of the glass - me smiling from a pavement of chatting milling parents, who all seemed to know each other doubtless from the parties and sleepovers to which my girl is not invited - and her, beautiful and inscrutable, like a Mona Lisa among crowds of holiday pre-teens.

I looked at her and I remembered what she said in the car as we drove here today: "It's okay Mummy, I don't mind who I sit next to because everyone else will be saying 'oh sorry, I'm sitting with someone else'."

The coach driver started the engine. The doors closed. The level of noise inside went up another notch. I put my fingers to my mouth and extended them quickly towards her, hoping to send love rather than embarrassment. And Grace smiled at me finally.

They drove off. I walked to my car, keeping my face as still as possible, and drove to the gym.

We are lucky. My daughter is doing really well at a good school that understands her. Many children with special educational needs wouldn't be able to go on this trip at all. Others might go, and find it much harder than she will. My daughter is lucky. She will enjoy much of this trip.

Push, dive, kick, breathe.


In the water, no-one can tell you are crying.


I will be swimming a mile for autism on Sunday July 20, as part of a nationwide campaign to raise awareness. You don't need to sponsor me - but do join in. It's easy. Simply: 

1. Do a mile in whatever way you choose - walking, cycling, running etc.
2. Post your #AMileForAutism photo to Twitter or Facebook on 20 July (not forgetting the all important hashtag!)
3. Text AMFA14 and either £1, £2, £5 or £10 to 70070 to make a donation, then encourage friends to join in and do the same.

Click here for more details.

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