Birthdays, storms and passions

Storms and passions pass. Neither the good, nor the bad, lasts.

A storm has woken me at 3am. Many aspies hate storms – the noise, the unpredictability. I love them. They remind me how powerless and insignificant I am. That, even in the worst of times, there are so many things bigger, better, and more important than me. That is not to say that I’m worthless. I don’t feel that. The storm just says that the world turns, even when I struggle to get out of bed.

This week has had its trials and joys. Like every other week, only more so. My son’s 8th birthday last week went brilliantly. But, brilliantly, for an aspie, sometimes means surviving without collapsing. Sometimes getting out of bed is the ultimate bravery. Perfect only son (‘L’) felt ambiguous on his birthday. Uncertain about whether it was a good or a scary thing. Mum’s stupid songs on the walk to school, carrying cake and party bags for his class, helped chivvy him along and made him laugh. The kudos from friends, for getting sweets and plastic tat, was priceless. (If I have to buy him friends, or at least encourage them, so be it. Many parents do a lot worse.) Yet I know his friends like him for who he is. Each of the kids in his class is different, and I enjoy seeing them all at pick-up. After three years of seeing them, I know which one has which difficulty and ability. Which ones are kind, which ones struggle. And L is respected for his differences.

The small party after school (two boy pals) goes well. There are no party games. No prizes. The kids play, as normal. So this is what it feels like, I tell myself. There are bittersweet happenings. A big hug and kiss from him feels unusual, and then sad because of that recognition. But today he is not Super Aspie Boy. He is just Super Birthday Boy. He is like everyone else. Eating cake, opening presents, playing computer games and war with his friends. And yet there are flickers of difference. A moment of trying to control the play – upset when toys are played with in the ‘wrong’ way. Struggling to eat anything, because of distractions and excitement. These may seem like normal things, but a mum worries. All in all, they are minor. They are normal enough.

And me? This week there were ecstatic highs, and crashing lows. The boiler broke, the roof leaked, the money ran out, the nerves frayed. More wine and cigarettes than I’d wanted. Dark thoughts returned. Then, two friends restored my faith and sanity. The fog lifted a little, the days went on.

Everything passes.

No prizes for normal.
x

Onesie Wednesday for National Autistic Society

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Over £700 raised for the National Autistic Society

At work on Weds 2 April 2014, we raised over £700 for the National Autistic Society. Nutty staff sweated in onesies. (Some of us taught a course, sweating in a onesie.) Other generous ones gave and sold cakes, made music, shook buckets, and donated wads of cash. Staff at all grades put notes in the buckets. Some people gave hugs, sent poignant emails, and gave words of encouragement. Not bad – for a bunch of reticent bean counters.

Why the National Autistic Society?

My seven-year-old son (L) has Asperger’s syndrome (sometimes called high-functioning autism, or ‘mild’ autism). So does his dad. Doctors say I’m a few points shy of the spectrum – but girls hide it better, and are underdiagnosed. Aspergers is an invisible disability, affecting interaction and communication. (Ironic, perhaps, for a family of writers, communicators and thinkers.)

Medics bunch all autistic conditions together, but the spectrum is wide. It spans the mildly quirky, the obviously impaired, and those who are non-verbal, non-functioning and need lifelong care. They say that if you’ve met one person on the spectrum, you’ve met one – each is unique. Yet people with Aspergers share the same ‘triad’ of social difficulties – communication, interaction and social imagination (sometimes described as showing poor empathy). God wired aspie, or autistic, brains differently – there is no magic ‘cure’. They (girls, particularly) can mask it and learn skills to cope and fit in. But they can’t change their brain wiring. They will probably always feel wrong and bad. That’s the science bit.

Close to home

L is an ‘Aspie’. He has ‘tics’ – repetitive behaviour that he can’t control, which increase in times of stress or excitement (and it’s sometimes hard to tell which he’s feeling). In his first school year, he had a tic where he licked each finger in a particular order – repeatedly, all day. Another tic had him: flick his hands out (Tommy Cooper style), grimace, flap his arms like a chicken and then jump (all in the space of a few seconds). Again, repeated dozens of times daily.

L – like most Aspies – is sometimes bullied or ostracised. Like a vulnerable alien, Aspies assume that everyone is kind, unless shown otherwise. Hurting people deliberately is illogical. Aspies are honest and never intentionally hurtful. They can misinterpret normal teasing as bullying, and see bullying attention as overtures of friendship. People are hard to understand.

In reception year, the teaching assistant found it funny to repeat L’s name (when he didn’t first hear her) until he would clamp his hands over his ears and cry. Hearing this from her, seeing her laugh, my shock stopped me from reacting. I walked away, winded at my treachery for not defending him. Or punching her. (Wrath of the Tiger Mom.) A few days later, I calmly made a complaint to his teacher. The teaching assistant continued to tease him, for the rest of the year. L learned that not everyone is trustworthy, and that his parents can’t protect him.

Upsides and contradictions

L has a terrifyingly high IQ – he counted up to six before he said his first proper words. He liked to line up toy cars in a perfect colour spectrum. He arranges rather than plays. He can remember events from when he was two, but can’t find his bedroom in our modest (but tasteful) flat. He forgets to eat or drink, when absorbed in something he loves. He mastered sarcasm aged two, but has a gentle intuitive nature. He befriends people who are different, like him, and shuns the loud and arrogant. He sees beauty in water swirling down a dirty East London drain. He thinks pop music is “the same song, repeated”, and prefers Johnny Cash and the blues. He is upset by injustice and poverty, and wants to work for a charity. He says work is a “one-day jail”, yet happily does chores for pocket-money. The little swine tells me when I’m a fool, which is often. He corrects my grammar, which happens less often.

L doesn’t like to be touched when he’s hurt or upset – or, in fact, most of the time. He finds it hard to know how to play with other kids. He wants to play, but he tries to control everything and has meltdowns when others don’t conform. He finds it hard to understand ‘reciprocity’ – in play or conversation. These things draw judgmental glances (and sometimes words) from other parents. Yet he’ll cuddle us to bits when he wants – on his terms. He likes to press flowers, dance alone, and cuddle the cat. He hates circuses, pantomimes, theme parks and crowds. He devours poetry, Shakespeare and war films. He eats whole limes, raw ginger and seafood. He hates mashed foods, and foods touching on his plate. He can spot a liar or a manipulator. He tells it like it is – sometimes brutally. He described a family christening service as “boring but beautiful”. He writes a journal of philosophical thoughts, such as “We have to die, or we’d see too much pain.”

World Autism Awareness month

The night before Onesie Wednesday, I watched a documentary to mark World Autism Awareness month, by autism expert Professor Uta Frith. It was hard viewing. Many people with Aspergers will never work. They struggle to keep jobs, relationships and friends. We misunderstand and misinterpret them. We tell them to change, to fit in, while no ‘neurotypical’ tries to understand or adapt to them.

The documentary showed a boy who, when given any date in history, could tell you its day of the week. Professor Frith said he was a ‘calendric calculator’. He was an amazing boy – not a specimen under a microscope. They say Aspie’s lack empathy, but many scientists are reputed to be autistic, which explains a lot.

Diagnosis and outlook

Diagnosis can be agonising, and take many years. Many people give up. Many people live their lives not knowing they’re on the spectrum. They live with untreatable depression, constant anxiety, poor self-knowledge, broken relationships, short-term employment, alcoholism and other addictions.

Sorry for the cheery picture, but them’s the facts.

Services for your money

The money will help the National Autistic Society to fund research and specialist schools, improve access to diagnosis, and give people better support and opportunities.

L is lucky. He has the middle-class, polenta-eating parents who have books and pester-power in the education system. We will fight for him – while not quite punching teaching assistants. Others who aren’t so lucky will benefit from your donations.

NPFN

Aspergers’ characteristics

Aspies struggle to:

  • read emotions, facial expressions and social situations, and know how to react appropriately (the lacking empathy myth)
  • say the ‘right thing’ (offending people unintentionally)
  • have reciprocal conversations (and reciprocal play, as children)
  • make and keep friends and partners (being alone is easier than constant criticism and error)
  • manage anxiety and stress, which they feel constantly
  • understand nuance and idioms (they ‘dance to a different tune’ but may not understand such sayings)
  • tolerate noise, crowds, and change (become reclusive, to cope).

Aspies love:

  • routine and repetition (same route to school, DVD, and food – every day for months)
  • logic, intellect, science, or literature
  • some special interest or obsession (discussed constantly, in great detail, and oblivious to your boredom)
  • peace and quiet.

Aspie upsides:

  • Not all Aspies have ‘Rainman’ abilities, but some excel in their special interest because of their ‘hyperfocus’ (dare we say, obsessions).
  • Many brilliant scientists, writers, inventors and innovators are on the spectrum.
  • They often have a wicked, and quirky, sense of humour – a survival technique.
  • They see the world differently, and often beautifully.
  • They bring light to a sometimes-dull existence.

Why must I be misunderstood?

One Aspie girl was misdiagnosed, and treated, as schizophrenic for years. Her doctor asked if she heard voices. She replied yes – because we hear voices, don’t we, when people are actually talking. That wasn’t what the doctor meant. Aspies interpret words literally, see the world as black and white, and assume that people can read their minds. Simple misunderstandings can have lifelong consequences.

Onesie Wednesday overall

Money from Onesie Wednesday will help people like Julie (and her son Richard) who contacted the NAS’s educational rights service. The service has supported 16,000 families in the last 10 years.

Julie’s son was diagnosed with autism before he started school. She contacted the National Autistic Society’s education rights service for help, after Richard’s school refused to assess his needs. Your £15 will help a family get the educational support their child needs.

With the help of the NAS, Julie went to tribunal three times over the next six years. Eventually, Richard got his assessment and went to a specialist school for children with Asperger syndrome.

“We were given help by an NAS education advisor. The lady was just wonderful. She was advising us all the time. She was always at the end of a telephone. She listened to us endlessly and she supported us all the way. She held our family together to be honest, says Julie.

I can’t tell you how wonderful things are now. He’s settled into school, he’s really into his LEGO and he’s making excellent progress … If we had to say ‘thank you’ now for the rest of our lives, we would never be able to thank the NAS enough!”

National Autistic Society: www.autism.org.uk

Wendy and Peter Pan (theatre review)

No longer are kids content with amateur panto (“he’s behind you”), in a musty old village hall. Kids’ theatre is big business, as testified by RSCs production of Wendy and Peter Pan. Ella Hickson’s feminist retelling of JM Barrie’s tale comes from Wendy’s viewpoint, and uses all adult actors.

There are sad twists. A fourth sibling (a son) dies, and Peter Pan appears like a spirit from the underworld. The children’s trip to Neverland is partly to find the lost sibling, and reconcile their fractured family. The mother and father flit, ghostlike in grief, through the children/pirate fight scenes. However, the adult subplot is a small feature.

The main events are joyful and funny. Tinkerbell is a voluptuous, raucous, loud-mouthed, cockney. Hook is a sexy lanky villain, and Smee (his bosun), is in love with him. Flying characters make the whole room the stage. Beds take to the air, the floor lifts up to reveal the lost boys’ den, and a huge pirate ship rolls on stage with cannons firing. The scenery is a character.

The doctor who attends the sibling’s death also plays the crocodile that haunts Hook – the personification and bringer of mortality. My son loved the way he crawled – wordless, sinuous, malevolent – across the stage, doing the splits, his patterned gold cloak dragging behind him. As the best authors know, the dark stuff is what the kids love – bring on the adult themes.

The RSC plans to put on all of Shakespeare’s plays in the next six years, with many filmed and broadcast on its website. They will make abridged versions for younger audiences. The RSC is reinventing Shakespeare, and theatre, for new audiences.

www.rsc.org.uk

I didn’t want a girl. I didn’t want an aspie.

I was remembering tonight that, when pregnant, I’d said I didn’t want a girl. I’d been relieved at the scan, when we saw definitively that he was a he. Now don’t get me wrong. Girls are great. I should know, I am one. But I’m not a girly girl. Sure, when I was little I played with dolls, tottered in my mum’s high heels, smeared on her lipstick. But, more often than not, I was with my brother climbing trees, jumping off walls, building dens and sending Action Man down a death slide. I once tried to shave my face, emulating my dad (RIP) using his razor blades. Cut my face to ribbons, but it still seemed cooler than any female accoutrements. Blame three older brothers for my tomboyishness.

So it was not misogyny (I don’t think) that worried me about having a girl. It was the inability to relate to girls and women. Girls and women seemed difficult, duplicitous, and untrustworthy. They cared what boys thought of them, they were coquettish, and I was the plain-Jane book-reading geek. Mystified by socialising – how to make and keep friends – I was bullied by the ‘mean girls’ clique. So, as a girl/woman, I knew the difficulties a girl could face. I didn’t want that for my daughter.

Fast forward several years. We find out that my boy’s dad has Asperger’s Syndrome (or is on the autistic spectrum, whichever terminology you prefer). We realise that darling son is likely an aspie too. His extreme quirks, fears, obsessions, oddities, extraordinary vocabulary, and extremely high IQ all make sense. No longer do I feel bewildered by his ‘tics’, ‘stims’ and OCD habits. The one where he had to lick his fingers in a particular order a thousand times a day. The one where he would grimace, flap his arms like a chicken, then jump (all in the space of a few seconds). Many more have come and gone. At the moment, his tics are mostly vocal (a lovely humming, where he goes up then down the scale again). Rather musical and rather lovely. But then, I suppose, I am biased.

I didn’t want a girl. But, I didn’t want an aspie either. I didn’t want a child who was teased by the teaching assistant, when he was overwhelmed with stimulation and would clamp his hands over his ears. I didn’t want a child who cried at birthday parties and clung to me, but would still refuse to leave. I didn’t want a child who didn’t want to go out, go to new places, eat new foods, acknowledge people or look them in the eye. One who couldn’t follow simple instructions, or would cry when being taught new things. One who already dominated me intellectually. I didn’t want a child that was bullied.

I got the child who mastered sarcasm, aged two. The child who reads better than most adults. Whose understanding of complex social situations, people’s intentions and true natures, is akin to psychic. The child who notices every little detail, tells me I am beautiful, and gives me a pep talk about how to cope when things get really bad. He is seven years old. He is as old as the hills.

We don’t always get what we want. And aren’t we lucky.

Declining educational standards

In the name of everything holy – what are we teaching our children?

A few nights ago I had a writer/editor tantrum at the following line from my son’s schoolbook: “he had a tail like a monkey, a head like a camel” and so on. Can anyone in the class tell me what is wrong with that?

That is a rhetorical question, I hear you all cry. Oh yes, it was, I cry back at you. The answer is that the sentence implies that the tail would resemble the WHOLE monkey, rather than just the monkey’s tail. That would make said animal truly freakish. If the author had written, “he had a tail like a monkey’s” that would have been correct. I assume that is what the author intended. But if he or she had written it correctly, I would have no one to be angry at today. No bile for my blog. And you would have all been so impoverished by that, no?

My Aspie son looked initially aghast when I stopped him reading, to rant about grammar, logic and declining editorial standards in publishing. But then he joined in the fun, as a fellow pedant and chip-off-the-old-block.

Declining standards. Grumble grumble. Maybe Michael Gove has a point. Grumble grumble. Bring back Latin, cold baths and the birch. Oh merciful heavens, I am morphing into middle-England’s ‘Disgusted, from Tunbridge Wells’. Twinset and pearls. Telegraph crossword.

The moral of the story, is beware what you compare.

Appalled, from East London

Scenes from a marriage (theatre review)

Nothing better than Swedish marriage angst on a rainy October night, I thought, as I left work to see Bergman’s Scenes From A Marriage at the St. James Theatre, Victoria. My new favourite theatre has 312 seats in only 14 rows. The back row is not a hardship. The first thing I saw there was Our Country’s Good, by Timberlake Wertenbaker. (Third row seats. You could smell the actor’s sweat, which is an added bonus for your money.) And an awesomely good play about theatre, race, class, punishment, education and a squillion other things. The Swedish angst was edge-of-seat stuff too. Olivia Williams and Mark Bazeley loved, grew apart, fell for other people, spat bitter words, screamed, cried, threw fists, kicked seven bells out of each other, and emerged bloody and limping. [Spoiler alert.] In the final scene they reconcile, both married to other people, for a familiar rendez vous. They have too much history to walk away from. No one will understand them as they understand each other. The theatre listings, so far, shun mediocrity. Let’s hope it continues. For forthcoming productions see: http://www.stjamestheatre.co.uk.

Why blog? Why write?

Why blog? Why write? I’m writing because people told me not to. More specifically, men told me not to – that it’s a waste of time; that no one reads blogs. Mumsnet blogfest 2013 encouraged me to start my blog. Women make me want to write. My work mentor encouraged me. But blogfest made me stop questioning whether I had the right to. I realised I could because I damn well want to. Because I love writing. Because I have things I want to say. Such as:

The line-up at Blogfest 2013 included women who have blogged, written, or been heard in other ways: Jo Brand, Justine Roberts, Stella Creasy, Tanya Byron, Sue Black, Helen Lewis, Tanya Barrow, Tania Tirraoro, Laura Bates (#EverydaySexism), Charlotte Raven, AL Kennedy, Lionel Shriver – to name just a few. Many of these women have stood up for injustice and free speech, or dared to intrude on a male world.

Jo Brand spoke about a corporate gig she’d done. The CEO of this unnamed multinational walked onto the stage then hissed misogynistic abuse in her ear (including calling her a C U Next Tuesday) before accepting an award. Jo turned to the mic and repeated what he’d said, verbatim. Stella Creasy spoke about receiving online rape threats and other abuse for speaking out about feminist issues. Do we need any more evidence that women still need to work hard, to make their voices heard?

Thanks to Mumsnet and all involved. I’m inspired, fuelled, and motivated.