SEN jungle for autism

Reality hits. I’m a liar. I’m dishonest. I say I’m ok when I’m not. I pretend to be strong when I’m terrified, anxious, abjectly miserable. My fear makes me fight. I fight, then collapse. I’m better than I think I am, maybe. But still wracked with self-doubt and low self-esteem.

Two-hour school meeting two days ago – soon to be a glorious monthly event. Professionals talking at us, with endless jargon and little action. Plans, reports, evidence, levels of evidence, levels of need, automatic funding and applied-for funding. Tribunals, panels, professionals. They will decide what help L should have, then what funding allows. Controlling his future, and what skills they deem necessary for him to fit in.

It is painful and confusing. The information a bombardment, the psycho babble impenetrable. I’m exhausted, before I even begin. And we’ve just returned from two lovely days in Paris (thank you, family, for that blissful birthday present). I should feel relaxed. The meeting destroyed that. I’m broken and depressed. Life is officially a battle.

This fearsome jungle is the SEN system. This morass of statements, meetings, appointments. This blundering intrusion into our lives and hearts. This jungle we worked to avoid – for the autistic beautiful boy, for us.

It will pass. But today. Just today. I feel alone.

Beloved freak: Letter to our son

My darling, L…. G…. I…. S….

We saddled you with the names of two dead, great men. My eccentric, bohemian dad, G…. H…. R…. B…. (with your pink trousers, wild hair, and untipped Gaulloise cigarettes – could you not have foreseen the lung cancer). And your dad’s brother, I…. S…. (cigar and fry-up for breakfast, laughing, no-nonsense Northern car salesman, who could sell ice to Eskimos) who died when you were blissful in the amniotic fluid.

L…. G…. Yesterday the paediatrician and psychologist formally diagnosed you as being on the autistic spectrum (high-functioning, but more severe than we’d thought). Further referrals to CFCS (possible ADHD/ADD), OT (dyspraxia, and sensory processing profiling), and CAMHS (mental health problems). The otherwise-friendly paediatrician administered the diagnosis, and lists of abbreviations, with the severity of a terminal illness. The psychologist said you’d need a lifetime of help to be normal (such a mediocre ambition). Strangers condemned you to a lifetime of furrowed-browed professionals telling you what you are, and how to change that.

There, in that humourless office, we celebrated you being on the Awesome Spectrum, with chocolates (and, later, we raised a beer [or juice] to you). You are officially in the Awesome Clan (we need our own tartan). The professionals looked on, horrified, as we cheered, saying how proud we are of you.

My boy, with your tenderness and humour. Your freckled birds-egg nose, and your sweet and warm milk-and-biscuits smell. You are not letters and labels. You are not broken, ‘disordered’, a ‘condition’, or ‘less than’. You do not need to learn to be someone else. You are bright, brilliant, beautiful. My heart aches with the severity of love. I know I could hurt people who hurt you. Our love for you is all-consuming, infinite, and we will fight every day for you.

You are my ‘beloved freak’, which I sing on my guitar. You will rise like the bloody-minded leviathan you are. You will continue to question and defy pointless rules and lazy assumptions. You, “Don’t like blonde psychologists, with too much eye make-up, asking me intrusive questions.” Oh yes, my darling, Welcome to healthcare – where your mind and body are no longer yours.

You are the one who approaches the severely autistic child in the waiting room, showing him toys, putting them in his hands when he can’t do it himself. Talking gently, standing beside him, smiling at him. You are the one who laughs (when first learning about racism) and says “But that’s stupid”.

Yes, we will now ‘access services’ and maybe get funding. You will get help, to learn what others find intuitive. And that’s good. But, in the fog of appointments and assessments, never forget that you are pure and perfect.

Mum and Dad

X

Psych ward, October 2014

[Written in Oct 2014]

The looney bin isn’t all it’s cracked up to be. It’s not a nightmare but neither is it the stuff of dreams. 25 years of depression leads to an East London mental health ward. A voluntary inpatient for two days (for starters). Except the nurse said I had to go – as I wasn’t considered safe to be home alone. Where’s Macaulay Culkin when you need him? Hospitals are grim at the best of times – we don’t come for a holiday. Overworked/indifferent staff, fluorescent lights, bad food, and worse décor. The Hilton it ain’t. And yet there’s something oddly reassuring about having your life taken out of your hands. An infantilising experience. Books and other media glamorise insanity – it is mad, bad and dangerous to know. But the reality is mundane. Bland hospital food, endless sweet tea, nothing to do and no one sane or sensible to talk to. Too bored to care, too ill to argue, I picked through the books on offer in the entertainment room. Slim pickings – mostly thrillers. Which seem like a poor choice for a psych ward. A Dummies guide to some computer programming language, which I consider. At least if I go madder I’ll learn a new skill. Then I find some odd gems – Elmore Leonard, Lawrence Block, Joyce Carol Oates. I select a temping collection: Murder at the racetrack. I wonder how long they’ll let me stay – long enough to read all of them? I wonder which other tortured soul left them here. Did he or she get out alive? Were they pulled into psychosis by a penny-dreadful thriller? Never to return to the redemptive wonders of hard-boiled crime fiction?

I’m being flippant and sarcastic – my defaults when cornered. This is not how I feel. I’m not sure how I feel. I rarely know. Alexithymia is a curse – not knowing how you feel until the pills/knife/rope is in your hands. I’m scared. I’m grateful for the lock on my door – and for staff making 15-minute checks through the glass. The room is cell-like and sparse, but the bed is comfy. Corridor noise veers between being intrusive to being reassuring. Terrifying and reassuring. That is the odd reality of being on a psych ward. I miss my son – I want to sniff him and have him sleeping in my bed. Even if he grinds his teeth and elbows me in the norks. It would be better than here. Perhaps that’s a sign that I’m getting better – or at least that I have hope. My ‘protective factor’ is what I miss. Missing him is a fishhook in my guts. But he’s safe with his dad. And I’m safe in here. Safe from the Cluedo objects that could hurt me. And the problems that will be there when I leave. Am I hopeful? No. I’m exhausted, depleted, demoralised, humiliated (and other ‘ed’ words that aren’t good). Fuck austerity. Fuck leaking roofs and endless bills. Fuck public sector payrises, overwork, single parenthood, and Asperger’s. Fuck skipping meals to make ends meet, and never paying for myself. Fuck men who offer me affairs, or over charge me for house repairs. Angry? Damn right I am.

Four days ago I screamed and swore at police officers who told me to calm down. So I shut down. Again. And talked about my cats. Mr Fred and Grey Stray. All NHS staff seem obsessed with how my pets are. Are they moonlighting for the RSPCA? Weird small talk. No more paper.

I asked for more paper and they gave me plain. Don’t they know I need lines to stick to?! A laptop would be better, but I’m guessing the NHS couldn’t accommodate that wish. A Kir Royale, a menthol cigarette and a cuddle would be good – but I’m guessing those aren’t to be had either. For what it is, the psych ward isn’t bad. Comfortable, safe, warm. The staff seem to care – a stark opposition to last week’s A&E debacle. A mercy dash to A&E, and a breakdown in the car park – it’s always cars or parking that break us, isn’t it? Something about those big metal monsters ramps up our stress. For me it was not having change for the parking. Broken machine in the deserted hospital entrance. Man in a little booth who said the canteen may have change, but it was probably closed by now. I stood dumbfounded. Having driven myself to A&E at the GP’s request (feeling suicidal), there was no way to park. And no way to admit myself – well, not without getting my car clamped. Somewhere up there someone was laughing at me. I was frozen with shock at this last straw. The little man asked if I was alright. A seismic rage came from nowhere. I threw my wallet, keys, bag on the ground and screamed, cursed, cried. Effed and blinded. Sank to my knees. Sobbing and broken. People walked past, still having their conversations. Apparently breakdowns are not worth commenting on. The good Samaritan is dead. He never existed. Not in Newham. Eventually a male nurse appears and tells me to calm down. I scream some more. Two police officers arrive. I scream some more. They fix a note to my car, promise me I won’t get a ticket, and escort me to A&E. One police officer is wearing blue plastic gloves. I ask him why, and joke that I thought my luck had changed. He looks at me blankly. An officer’s sense of humour – clearly no laughing matter. They leave me to the check-in staff, who point to a chair. (When one goes beyond words, everyone else responds in kind – they think they don’t have to talk to you.) I sit and sob in A&E until a triage nurse arrives. She asks me repeatedly what has happened. She is brusque and tactless. I shut down some more, as her questions are too stupid to answer. She sticks wires on me, blood pressure cuff, and thermometer in my ear – all without warning and conversation. She leads me to a fluorescent bright windowless room, tells me to wait there, then leaves.

An hour passes. I switch off the lights and shut the door, to stop people staring in at me. I feel like an exhibit. Eventually a pretty Nordic (Scandinavian?) psych doctor assesses me. My newish partner arrives and they discuss whether I should be admitted voluntarily or sectioned. My wishes seem irrelevant. But I insist on going home – I won’t be alone as my man will be with me. I remember I’ve had no food or drink since lunchtime (it is now nearly midnight). New man gets sweet tea. Scandinavian/Nordic chick gets toast and jam. No one asked me if I needed anything. I am a problem to solve – a set of symptoms, maybe an irritation. I am angry at the lack of humanity and communication. I am angry at my stupid brain, my stupid feelings, my reactions that cause me to fall apart and be helpless. To be such a child that I can’t take care of my child. I’m angry at being lonely, at being alone, at not telling people that I’m going down until it’s too late. I am angry at myself. I am angry at the world.

Back in the psych ward, four days after A&E. My brother has visited. We smoked and laughed at the décor. My partner cannot come till tomorrow afternoon. I have no clean clothes. It is midnight and no one has given me the pills they took from me – the pills that might keep me alive. I have a fetching pink hospital gown, which opens at the back. And no clean clothes. And no make up. I’m not sure which is worse.

[At this point I gave up writing, exhausted…]

Long way to diagnosis

How did I know I had Asperger’s? For 39 years, I didn’t. At least, I didn’t until after my son was born and showed autistic symptoms, my marriage to aspie husband ended, and I’d had my umpteenth nervous breakdown (one every 18 months – you could set your watch by them). Not until I realised the extreme anxiety I felt daily, at the smallest task or change or transition (such as doing a chore, or leaving the house). Not until I obsessively read over 40 books about autism (to help my son) and kept thinking, well that’s not so weird I do/feel/am afraid of that. I found myself on every page, but even so years passed before the penny dropped. (We aspies can struggle to process information. Sometimes taking months or years to grasp something, often too late in retrospect. Those brilliant pesky thoughts that flash and dart away like fishes.)

I didn’t know for sure that I was aspie until I tried for 25 years to convince GPs, psychiatrists, nurses, psychologists, and psych ward staff that my symptoms weren’t ‘just’ depression. Professionals who brushed me off or misdiagnosed me (depression, anxiety, cyclothymia, bipolar – blah blah blah). Not until I told people and they ‘reassured me’ that I was imagining it or overreacting. Or that everyone feels a bit like that sometimes, or has one of those weird symptoms. Or that I should just accept that maybe I did have it, but why bother getting a diagnosis? (Or, alternatively “how do you know for sure, without a diagnosis”? Would anyone say that to someone with a ‘physical’ condition?) Not until I ended up having the worst breakdown yet, almost arrested in an A&E car park and subsequently enjoying the leisure facilities of an East London psych ward. It was then that my determination to push for an assessment crystallised. I booked an appointment to see Dr Judith Gould (the expert in diagnosing women, at the Lorna Wing Centre).

Some people said I should stop naval gazing and get on with life. That I thought too much, and was tediously self-obsessed. I’m sure I was. I’m sure I am. We can seem self-absorbed and selfish. One can tend to be, when living in hell. So, sure, I should try to accept relentless anxiety and depression, useless medications and therapies, condescending professionals, the shakes every morning (like a drunk with the DTs), being duped and abused by people, being unable to run all the parts of my life (including a child and a job) for too long without breaking down. I should accept being unable to navigate work or close relationships and conversations without feeling lost and confused, and then shutting down at conflict or criticism. Having shutdowns and mutism. Having meltdowns in busy places, like a tantrummy child. Being unable to communicate thoughts and feelings, until lapsing into suicidal thoughts and plans. Not knowing how I felt (called alexithymia) and that I was going down – not until it was too late. I should accept that socialising is painful, and leaves me exhausted for days or weeks afterwards. And that certain lights (fluorescent) and ‘normal’ noises (sirens, hand driers) hurt, and certain smells (perfume/’beauty’ products) cause nausea and headaches. To the point that it’s easier to stay at home. I should accept all that, without a thought. Easy advice to give – when it doesn’t affect you.

I knew I was aspie when everyone was so certain that I wasn’t. It wasn’t that I wanted to prove them wrong (I didn’t want to be an aspie). It was that I finally realised that no one knew how I felt, what I feared, and how lonely and desperate I was. How could they? They couldn’t X-ray my thoughts and feelings. And I couldn’t explain it verbally (one of my problem areas). No one could see my thoughts, and feel my feelings for me. (I often assumed they could, and was confused at people’s apparent lack of feeling.) I feel I can forgive anyone almost anything. Partly because I know I’m deeply flawed, and capable of many foolish words and acts. Partly because I’m naïve. And partly because I have the classic aspie ‘black and white’ thinking that everyone is good unless proved definitely otherwise (well, maybe not child murders and rapists, but you get the picture). I generally believe that everyone is capable of redemption. I am optimistic about humanity. This was an easy rule to live by. Except when I was so frequently cheated, hurt and let down. When people proved themselves to be predators and abusers. Now I am coming to understand the world isn’t quite so black and white. I am less vulnerable. Knowledge is power. And, yet, I am disabled. And there’s no cure.

What good is a diagnosis? It brings relief and understanding. It tells me that I’m not mad, bad or stupid (well, no more so than anyone else). I’m not merely selfish, socially inept and useless. All things I have either thought, or heard.

On the contrary. I am disabled. And, to be utterly modest about it, I am completely and undeniably brilliant. My diagnostic report says I’m highly articulate and intelligent. It says that my struggles with communicating, socialising, and sensory overload mean that my achievements mean more. Because I’ve faced the demons inside, and often won. That simply getting out of bed every day is the ultimate act of bravery – deserving of swords on the shoulder, and medals. Now, rather than having “dropped out of jobs after a few years”, I have “successfully held jobs for several years”. That paradigm shift is vital – for sanity and self-esteem. I finally deserve to wear that awesome Wonder Woman outfit I had when I was six (and wore under my school uniform, so I could perform superhero deeds at a minute’s notice).

I am brilliant with words. Call that aspie arrogance or aspie honesty – take your pick. (As I’m aspie I’m not listening to you anyway.) Leave me alone to do my job, and I’ll do it better than anyone. But ask me to manage people, or to juggle socialising or work in an open-plan office with its sensory input, and I struggle or shut down. I don’t know how to start and end conversations. Don’t know when I’ve said too much or too little, been too harsh or too much of a doormat. Don’t know if I’m perceived as selfish and egotistical. (I’m guessing I probably am seen that way, but we aspies lack self-awareness. Then we give up caring.)

A diagnosis says there are limits to how much I can change. My brain is wired this way. Yes, the diagnosis is a death and a grieving, of sorts. Of who I was and the possibilities that I felt were in me. (I may never be the first aspie Prime Minister, and sort this damn country out. Or maybe I will be. Who knows? I don’t envy those PR people, who’d have to media manage my gaffs.) However, it is not an excuse. It is not a reason to opt out of life and become a hermit – no matter how much I desire it, because it reduces the relentless stress and anxiety. Quite the opposite, it is a freedom to accept who I am. A release. A way to forgive myself for my mistakes, and to start anew, reborn. It means I now know that I can do anything I really want to do. It is a way to break out of the confines of gender roles that say who we must be, what we must wear, how we must fit in and behave. It is freedom to admit my loathing for loud places and parties, socialising in groups, crowds, perfume, make-up and high heels, shopping malls and phone calls. The ‘normal’ trappings of a socially constructed, gendered, consumerist society.

A diagnosis is as exhilarating as the biggest and best orgasm, and as sobering as cancer.

A diagnosis is not a licence to offend without thought or reflection. (To talk about orgasms on my work blog.) On the contrary, I hope it may bring greater awareness to my actions. More awareness of the impact I have. And maybe, just maybe, that the all-important ‘they’ – the ones who matter – will understand.

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

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.