Monday, 14 July 2014

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.





Monday, 23 June 2014

Pond Life

It's 6am on a June morning. The skies are clear blue. A faint, sweet breeze rustles the branches of the trees outside my house. No one else is up. The street is quiet. It promises a lovely summer day.

It's the perfect day for a run.

Instead, I climb into my car and drive to the swimming pool.

When I arrive there is a small queue of regulars waiting at the front door to be let in. They fall into two clear categories: the very old, who wake early and come to glide carefully, like small wise turtles, up and down in the slow lane; and the very fit, who leap out of bed to come and motor up and down in the outside pool - the temperature of which is kept seriously cold, for serious people.

Then there's me. I keep telling myself it doesn't matter that I don't fit, because I'm not a swimmer, I'm a runner and I'm only here for a while.

But it's been two months, and that's starting to feel a bit longer than a while.

It's two months since I limped over the finish line of the London marathon and I haven't run since. I've seen a doctor, a physio, and an osteopath. They all have different opinions about what I might have done to my knee. I don't know what to do with so many different suggestions, so I'm not doing anything at all. That's to say - I'm not running. But I think about running every single day. And every day my knee reminds me, in various squeaks and twangs, and the occasional shooting pain if I'm starting to feel too optimistic, that it's not ready to be tested.

But I'm really bad at sitting around. And I want to be fit for when I can run again. So I'm spending a lot of time in the pool.

I don't like swimming. I've written about this before, so I won't bore you with it again, except to say that compared to running through fields of waving grass - and along tracks of fresh-smelling earth, in the fresh air and glorious, isolated, freedom - the up-and-down of the bob-dip-chlorine-sting while avoiding other people's toes and spit is really not doing it for me.

But I am persevering.

This morning, when the gym manager comes to let us all in, she advises that the indoor pool is closed because the chlorine levels are too high, so it's the outdoor pool only. A mutter goes up. I walk to the changing rooms behind three old ladies with candyfloss hair and velour tracksuits who are each dragging a small bag on wheels stuffed with potions and curlers and other, vital, post-swim kit.

"Why are the chlorine levels so high?" one wonders aloud.

"Someone had An Accident in there yesterday," says another, knowledgeably. "A number two."

The third one tuts. "Children in the pool. What do you expect. Really."

"Oh no," says the second one, mildly. "It wasn't a child. It was an adult."

The first one squeaks, and so do I, but manage to turn it into a light cough in time.

We go into the changing rooms. The ladies turn left. I turn right. I open a locker door, and start to get changed, grumbling to myself about being stuck doing the kind of sport so insanitary that you have to be doused in chemicals in order to protect you from other people's poo. I huff and puff, and brace for a cold dip.

But when I get to the door to the outdoor pool, there's a gaggle of disgruntled Serious Swimmers blocking the way with their broad shoulders and tiny waists and lean sculpted thighs. (What? Oh okay, so this sport does have one thing going for it.) It turns out that the outdoor pool is shut too, because the water levels are too low. There's no swimming at all this morning.

Everyone goes back to the changing rooms. I stand alone for a moment, frustrated - reluctant to pack up and go home but unable to think of an alternative. Then the janitor comes past and says he'll be testing the chlorine level of the indoor pool again in ten minutes and why don't I go to the steam room for a bit and then come back. So I do.

When I re-emerge, pink and blinking, the janitor gives me a cheery thumbs-up. The pool is open and I am the only person there. I rush to it and dive in immediately, suppressing a whoop, and strike out.

By the fifth lap I realise that I am smiling to myself in the way I used to when a run was going really well. By the tenth lap I realise that I didn't think about the last five laps because I was enjoying myself so much. By the twentieth lap I become aware that no part of my body is hurting me, at all, and that this is the first time in weeks and weeks that I have felt so whole and healthy. By the twenty-fifth lap I feel as though I am becoming longer and stronger. By the fiftieth lap, I have abandoned all conscious thought, lost in blissful blue zen.

After seventy laps I stop and surface and shake my head and clean my goggles. Then I do a quick back flip under water in quiet celebration. I haven't felt this good in a long time. I could keep swimming for ever, but a glance at the Olympic clock on the wall tells me I have to go home.

I pull myself out and glance around, and realise that I'm no longer alone. There's a man at the other end of the pool, in the lane beside mine. He isn't swimming, but is squatting in the water so that it comes up to his shoulders and the tip of his luxuriant beard, which I see now that he appears to be grooming.

I suppress a shudder and go for a very hot shower. But I'm already planning when to come back again.




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.








Thursday, 29 May 2014

And still, they don't get it

In the wake of Elliot Rodger's actions, I wrote this blog about the mistaken and painful perception that a diagnosis of autism and Asperger's Syndrome can make someone a killer.

That day, I also complained to the BBC about its responsibility not to perpetuate this myth, because its online news story about Rodger pointed out his Asperger's diagnosis - which seems to have been wrong, as his family said later they "suspected" but had had no formal diagnosis - in a way that strongly suggested it might be a factor at play and, in my view, invited readers to make the link.

In the same complaint, I protested the BBC's decision to include at the end of its online news story lines of additional information about Asperger's, because it drove home the implicit suggestion that this was a major factor in the killing.

This is the very disappointing response I received today:

"We understand you were concerned that our article referred to Elliot Rodger having Asperger Syndrome.

This information was provided by the family’s lawyer and is included as background detail about the young man involved. There was no suggestion that his Asperger’s led to him committing murder or that people with Asperger’s are predisposed to such violence.

However, given his own comments in his manifesto and video, he was concerned at his apparent inability to form and develop relationships, and it could be that his Asperger’s played some part in those problems. So clearly this was information worth including. 

But like people without Asperger’s, those with the condition are individuals who respond differently to various situations, and we have neither stated nor suggested that Elliot Rodger’s diagnosis was the direct cause of the killings.



Now, I understand how entrenched some people's mistaken views about autism and violent behaviour are. If I had not been aware of this, some of the comments left at the end of my last blog would have left me in no doubt.

But I don't understand why the BBC does not understand. I also don't understand why it failed to see the point I was making about its responsibility not to suggest.

(And I don't understand why the BBC failed to answer my complaint about the fulsome additional information included at the bottom of the Rodger news story about Asperger's Syndrome - how it's diagnosed, what it means, how some individuals might behave - though I do wonder whether that might have anything to do with the fact that those lines quietly disappeared sometime mid-afternoon that day as lots of people joined me in complaining loudly across various social media about the BBC's coverage.)

So I've written back to the BBC again. This time, I've asked: if Rodger had been left-handed, would the BBC have included that information as a relevant detail? It's about as relevant as his Asperger's diagnosis. If he had been deaf, would it have included lines and lines of detail about that medical condition? (And can you imagine the outcry if it had?)

One of the few sensible things I read in the immediate aftermath of what happened in Santa Barbara was the statement by Mark Lever, chief executive of Britain's National Autistic Society. So I'm going to give him the last word, below. And I'm going to hope that the BBC is reading.

"The shootings in California are shocking and our thoughts are with everyone caught up in this tragedy.

“We would urge the public not to jump to conclusions about reports stating that the perpetrator had Asperger syndrome, a form of autism, or to associate the actions of one individual with a whole section of society.

"The vast majority of individuals with autism are law abiding and respect the rules of society. Indeed, in many cases, individuals with autism are unusually concerned to keep to the letter of the law, due to the nature of the disability."

Sunday, 25 May 2014

Violent and wrong: Elliot Rodger's crime should not taint my child

Another boy, another gun.

A little later, another photograph.

Brown hair, brown eyes. Slanting cheekbones. A way of tilting the head.

Scrutiny. Debate. Then - aha! He had Asperger's.

The pain of the parents of the children killed by Elliot Rodger is unimaginable. The pain of the parents of Elliot Rodger is unfathomable.

What I can describe is the pain of a another parent, one whose child has Aspergers and who is this morning trying to formulate a response to yet another story in which their child's diagnosis is being held up as an explanation for murder.

While I type this, my daughter is asleep upstairs. It's half-term, and she's tired. Her room is still dark, the curtains closed. I went in earlier to wake her, then changed my mind. She was so fast asleep, so lost in her dreams, that I couldn't bear to disturb her. Instead I stood in the shadows and listened to her soft breathing and to the spring rain pattering on the windows. I looked at her and I thought: my little girl. What will the world make of you now?

I haven't slept. I am indignant, fearful and full of rage - like many others out there adding their voices to this collective shriek of pain. I am in the worst possible state to attempt to present an argument. But when others are shouting such nonsense so loudly, I feel as though I have to try.

For as long as I have known that my daughter was autistic, I have fought against autism stereotypes. My daughter's autism is an essential part of her, but it is not the essence of her. She is sweet and funny and clever and sparky and eccentric and arty .. for so long my biggest frustration was that everyone wanted to label her as Rainman. The number of times Dustin Hoffman's stuttering mathematical genius has been cited in conversations about my daughter's diagnosis is so many I have lost count.

But faced with the conversations I am reading today - the ignorant, block-headed tweets and comments about "kids with Asperger's disease who kill other kids" - I could almost wish back those days of clumsy cliche. They seem so innocent now. That my daughter's diagnosis puts her, in so many lazy, unthinking people's minds, alongside the likes of Rodger and Adam Lanza, who fatally shot twenty children and six adults at Sandy Hook elementary school, is horrifying.

It's very hard to speak for all people with Asperger's Syndrome. To those denouncing them all this morning as potential mass murderers, I would point out that when you've met one person with autism, you've met one person with autism. However, if I may be allowed one generalisation with which to fight back - most people with Asperger's don't want "revenge against humanity." To say today that all people with Asperger's are potential killers is as reprehensible and wrong-headed as Rodger's own assertion that blonde women were collectively to blame for his unhappiness.

Listen to me. Listen to me.

Autistic people are far more likely to be victims of crime than perpetrators.

Some people with autism have difficulty understanding other people. But it does not follow to say that every person who has difficulty understanding other people is like that because he or she is autistic.

To say that Elliot Rodger did this because he is on the autism spectrum is like saying Elliot Rodger did this because he was a man, and white.

Autistic people who commit these acts are no more representative of  people with autism than white male serial killers are representative of white males.

Listen.

As Emily Willingham wrote in her fabulous paper for Forbes earlier this week, the real unifying feature of most mass murderers isn't autism or brain injury, "it's anger and rage, often blasted outward at innocent targets by means of easily accessible firearms."

And in this case, not only is the role played by firearms far more relevant than where Rodger might have been on the spectrum, but - as Jessica Valenti writes in the Guardian today - to dismiss him as a madman also glosses over the role that misogyny and a sexist society played.

I would write more, I would write on and on, but my daughter has just woken up and come down to see me. She is standing in front of me smiling, hair mussed, anticipating a good day. I tell her I love her. She tells me that she loves me back, then goes to cuddle her little sister.

There is a lot to be sifted through and assessed in the Santa Barbara killings. Of all of these things, Asperger's is a detail. It is not a pre-determination.





Grace Under Pressure: Going The Distance as an Asperger's Mum is published by Piatkus in the UK and by New World Library in the U.S.







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

Doom

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.

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