Tuesday, 16 July 2013

Can You Tell What It Is Yet?

So Vodafone has become the latest global blue-chip to cotton on to the business advantage of having autistic employees.

The telecoms firm has been recruiting people with autism to its offices in Germany, hoping to harness their skills with numbers and patterns to the company's advantage.

They are not the first company to do this. German software firm SAP said in May it hoped to recruit hundreds of people with autism in order to capitalise on their "unique talent" for information technology, after an initial small-scale trial boosted productivity. A week later mortgage finance company Freddie Mac launched a second round of paid internships open only to autistic candidates.

Activists cheered. Neurological diversity was on the way, slowly, but as steadily as race and gender, they said.

However. If you look up the media coverage of this trend, if you were to google, for example 'autism' and 'recruitment' you would find a national newspaper refer to SAP's initiative as a plan to recruit "autism sufferers" . The article is illustrated with a photograph of Dustin Hoffman playing - you guessed it - Rainman. (Ta da!)

That article is the perfect summary of where we are in terms of society's perception of autism. Right there, that's it in a nutshell. We are in a Very Strange Place. I don't believe that SAP believes it is hiring "sufferers", but rather highly efficient people who are uniquely gifted with the kind of skills and insight that SAP thinks will make it a lot of money. I don't believe either that the autistic people whom SAP is hiring view themselves as sufferers. (I do however class as sufferers those of us who have to read that particular newspaper in the interest of research.) The story is skewed because of a failure to see past the big scarlet 'A' of Autism and the view that Autism Is A Bad Thing.

Proof of how entrenched this view is: While Vodafone was probably putting the finishing touches to its recruitment plan, buses in Seattle were driving around bearing this ad, showing a little boy's smiling face alongside the legend "Let's wipe out cancer, diabetes and autism in his lifetime." The children's hospital responsible - a children's hospital! - was forced to apologise and withdraw the ad. There then followed much debate about why listing autism alongside cancer might be wrong. Lots of people, including me, were cross that this was even a debate. Lots of other people, including TV doctor Christian Jessen, suggested we were overreacting. A friend of mine thought that parents who protested were doing so because they were too involved in the minutiae of their stressful, autism-centric lives to see that actually the ad was a great exercise in raising awareness.

Raising awareness. This is the way people who are learning to care often now speak about Worthy Causes and Difficult Topics. I use the term too. But it's not enough, any more, to use it without thinking about what you want people to be aware of. Many people think they know what autism is when they are not fully aware of what autism really is. In my view it is not something that should be included in a list of severe illnesses that can result in death. I would prefer we see autism as something to accept, and celebrate in many cases, rather than something that is better obliterated so we can all be normal, whatever that is.

I know this is relatively easy for me to say because my daughter has a high-functioning form of autism that comes with gifts such as artistic skill and theatrical flair. It is harder to think this way if your child is having a very tough life. It is hard to think this way if your child has very low functioning autism and will live all their life with the mental ability of a very young child. I cannot and would not presume to speak for those parents. But as an autistic friend of mine, who has had cancer, put it: "For many of us with autism it's like putting on a bus: "Let's wipe out cancer, diabetes and women" on the basis that women have period pain and mood swings and therefore their quality of life must be terrible and we should spend billions trying to find a way to turn them into the much more efficiently designed and emotionally stable men. We are not broken things to be fixed." This friend, by the way, has run a business for 13 years with turnover of £14 million and, during all that time, an error rate of 82 pence.

So far, so very weird. How do we explain the dichotomy between companies hiring autistic people for profit and the rest of society fearing and condemning them? This piece written by a mother at the end of her tether with her "demon daughter" set off a lot of alarm bells for me when I read it. A child who refuses to go to bed, get dressed, have her hair brushed, or essentially do anything she doesn't want to? Is that saying anything to you? To the people who left comments beneath the article it said that she was naughty and deserved to have all her toys taken away, straight away.

This baffles me. How can it be that while SAP and Vodafone and Freddie Mac are minting money from employees on the autism spectrum, and while award-winning novels and plays and films about autism surround us, we can simultaneously be in this other place too? How is it that there can be the Treehouse School, with its extraordinary care and calm understanding just a short journey from the educational establishment where for years my daughter and I battled to be helped? (I visited Treehouse today, and was moved to tears at one point by the impact of seeing such a professional and sensitive approach to supporting autistic children.) My daughter has been called naughty. We have been told in the past that bullying was something she brought on herself. But the people who used to think that have learned about her autism diagnosis. My daughter has learned how to temper some of her behaviour. I have learned - though it exasperates me to the point of screaming sometimes - that she just cannot go to sleep much before midnight, and needs her hair brushed with a special brush and won't wear clothes that don't feel nice on her skin. We have all learned a true awareness of Grace's autism. To watch her shine in the school production of Grease last week was all the more glorious for the whole class's joyful celebration of unconventionality and friendship.

It feels as though we are all watching a film in which the camera is panning back very slowly from something we cannot yet make out; as though we are guessing and guessing at the pixellated images as they shift and turn slowly into focus. Some of us have figured it out. Others are still screwing up their faces and tilting their head to the side as they try to size up this thing, whatever it is. Others have made up their mind, regardless of what the final image will show.

We have to continue until we figure it out. If we limit our understanding of autism, dismiss it, or give it an out of date label, we may all end up worse off. As Kate Ravilious said so well in her New Scientist article:

"If the special talents in the population have helped humans to get this far, we may need such different modes of thinking to see us through the next few thousand years. If the past teaches us anything, it's that humanity thrives by being adaptable."

Or, as Barry Gibb put it equally well: "Conventionality belongs to yesterday."

Grace Under Pressure: Going the distance as an Asperger's Mum is published by Piatkus. Details here.  It will be published in the United States by New World Library in September. Details here

I will be running the Royal Parks half-marathon in October to raise funds - and  awareness! - for autism. If you liked this article, please click here to sponsor me. 

Sunday, 14 July 2013

High School Musical

I am sitting on an uncomfortable little chair again.

The orange bucket seat is hard underneath me, its short plastic legs perilously splayed. The set-up has got no more comfortable since last year's school show, or the one before. Lines of parents in front of me shift uncomfortably in their Lilliputian pews. Betty, at my side, has already decided that she'd rather stand, and is hopping from foot to little foot, sandals clacking on the parquet floor, as she tries to launch herself above the audience blocking her view.

"Where's Grace?" she asks. "Where is she?"

I tell her that Grace is getting ready and will be along soon. Then I look down the row to Grace's dad, to her stepbrothers J and D and to her stepdad, all of whom look as though they too would be hopping from foot to foot to see her, if convention allowed. I smile, and they all smile back, and we sit a little longer listening to the blarts and burps of the band warming up, and the buzz of people arriving. It is hot, and the air conditioning is not quite keeping up. The stage is set with a canvas, bathed in a sultry red light, which bears the legend: Rydell High School. I have butterflies in my stomach.

Just as I am about to check my watch for the seventh time, two women stop beside my seat. One I know well, the other is a familiar face at the school gates for the last several years. They look down at me with the shiny excitement of people who are about to hand you the perfect present to unwrap. "Haven't you seen it yet? Haven't you seen her?" they ask. I smile and shake my head and tell them that Grace's aunties came the night before last. "She's amazing!" says one. "Amazing," concurs the other, grinning. "Such a voice!" They nudge me and then each other, mouthing O's of amazement and waggling their eyebrows in glee at me and I can feel that suddenly, I am beaming. "You wait, there'll be tears! You're going to have a little cry tonight, you are!" they promise me, and leave, chuckling and casting mischievous looks over their shoulders while bustling to their seats, for it's clear that the show is about to start.

My stomach is doing flips now: I feel as though I am perched at the top of a rollercoaster track, awaiting the swooping departure down.

Then suddenly, the band is playing that unmistakeable tune and everyone in the audience goes: ooh, and thrills a little bit, and the children are marching on and there is Grace and oh my god she's so beautiful and her eyes are bright and she's looking for me while she sings, searching the rows and she's found me and - though I wouldn't have thought it possible - she lights up a bit more and she sings straight to me, shoulder to shoulder with her classmates:

"We take the pressure and we throw away
Conventionality belongs to yesterday
There is a chance that we can make it so far
We start believing now that we can be who we are - "

and I am lost already, rummaging in my handbag for a tissue. The audience is already clapping in time and whistling and the children all stand a bit straighter and grin out at us from under the lights. The song finishes and - before a word of dialogue is uttered - the place goes barmy. Whoops and cheers and whistles from the audience seem to push out the walls and the doors and the roof - surely the room can't contain such sonic pressure - and Betty puts her hands over her ears in sudden shock. I am whooping along with the rest, while wondering how I'm going to make it through to the end without being reduced to a puddle of salt water.

But the show has started properly now and the kids are talking, exchanging pretty lines and pert put-downs, strutting around the stage like they own it - because tonight, they really do. Danny is played by a tiny trim-lined lothario in black with a bouffant and liquid eyes - a dead ringer for Prince, circa 1982, minus the stack heels; Sandy in yellow cardie and skirt is played with sweet earnestness by a blue-eyed, blonde beauty. They are lovely. But I can't take my eyes off Grace for long. She is playing one of the Pink Ladies - Marty, with her boyfriends and gum and diamante sunglasses,  big hair and vulnerable gobbiness - and she has it down pat. She lays on the wicked asides, rolling her eyes and pulling faces for the audience, and we love it. The minutes whizz by - I haven't had this much fun for ages - and suddenly it's time for her solo.

The dialogue dies away and Grace walks to the middle of the stage and her co-stars form an expectant circle around her. The band gives her a cue, and she opens her mouth and somehow Tina Turner has appeared from somewhere. Grace's voice is huge and absolutely on the money and the audience to a man sits back and goes: whoah. I am so proud I feel as though I could burst out of my clothes. And - bugger it - I am crying again, while beaming at her as she looks for my approval while she sings. When she finishes, the hall goes nuts again. As we file out for the interval several more mums come to me and tell me what a talent my daughter has, how great her singing is, and I gush back excitedly thank you, she does and it is and isn't your boy wonderful and your girl is just great and just like that old hurts pass and Grace and I are part of the community again.

Then the show goes on, and on. I can't feel my buttocks and I have cramp in my legs, but the torture of my seating barely matters. The Rizzo sisters come on - the role split into two here to showcase more talent. They are the Tweedledum and Tweedledee of tartness, the gorgeous girls playing them bubbling with wicked pleasure at some of the verbal slap-downs they get to deliver to their male classmates, who wince theatrically, and stagger about for laughs (which they get in bucket-loads.) The dance competition arrives, and the class bounces so high to the hand-jive that the audience laughs out loud and loves them all even more. Cha-Cha, stealing both Danny and the trophy, is played to delicious perfection by another beauty, with ebony hair and tight, effortless dance moves that make us all gasp.

As the children gather for the final number, my mind goes back over the past few years, over Grace's experiences at this school. I remember the hurts and the endless visits to the office, the nights in the kitchen going over the latest incident and the latest row and the latest fights in class. I remember the hours spent trying to summon up help, and cut our way through the thicket of bureaucracy put up to stop us finding the pot of gold we needed.  I remember the weeks of feeling so lonely and so worried for my lonely, worried girl. I remember that in the end, help did come, and with it awareness and tolerance and friendship.

Grace is standing in the middle of the stage now, in a row of children, with her arms around the classmates to either side, and their arms around her. They are swaying, and singing:

"We go together like ramma lamma lamma ka dinga da dinga dong
Chang chang changity chang shoo bop that's the way it should be, woooo yeah!"

- and in the middle of the silly lyrics it seems they all realise too that they've all come together, grown up together and made this wonderful thing together, and they hug each other and sing -

"We'll always be together
We'll always be together.."

After the show, Grace asks if she can stay for the after-party please. I hug her and tell her of course she can. I tell her she was wonderful, and I love her so much - but she is already gone, running down the corridor. Her friends are waiting.

Grace Under Pressure: Going the distance as an Asperger's Mum is published by Piatkus in the UK. Details here

It will be published in the United States by New World Library in September. Details here