Mimanifesto – Jaye’s weblog

Archive for the ‘Autism’ Category

O My people, My people what have I done to you, how have I offended you?  answer me

After the Maundy Thursday mass, followed by the stripping of the church and the vigil until midnight, we go straight into the three services the next day. Book-ended by the Veneration of the Cross and the Stations of the Cross services is the three hour devotions, seven sermons and music for reflection. It marks the time when Jesus was crucified. Kelvin describes this service in more detail here...

ImageIts yet another up and down on the roller-coaster that is Holy week. Starting with the joy of Jesus’ entry into Jerusalem on Palm Sunday, and ending with a fantastic Choral Evensong on Easter Sunday.

As if the drama of the lamentations and stripping  the church bare wasn’t enough, the Good Friday services slash into all your senses, cutting deeply and exposing the pain, doubt, and utter helplessness of a situation over which we, or Jesus for that matter, have no control. His crucifixion. Being taken by the soldiers, stripped, held down on the same wooden cross he’d dragged all the way from the city out to Golgotha, and having great big nails cruelly hammered through his hands and feet, finally hoisted upright, his agony stark and bare for all to see.

This year, the sermons were based upon Gwyneth Leech paintings of the stations of the cross. There was no escaping these images, projected up onto the big screen at the front of the nave pews. One in particular had me in tears as I listened and thought more about it. Kelvin preached the station which has Jesus being nailed to the cross, in a way which transposed each hammer strike and nail into being representative of an act of cruelty to other oppressed minorities and individuals persecuted just because they are different.

Hopefully, the full text of this and the other sermons will be posted as usual on his blog. But remember these people,  who just wanted to get on with their lives, and whenever similar stories of bigotry, bullying and unfairness rear their ugly heads in your life.

Steven Simpson, eighteen years old, autistic and gay. Covered in tanning oil and set on fire after terrible homophobic bullying. Sixty percent burns, and a slow painful death. Just for asking the world to accept him for what he was.

Lucy Meadows hounded to her death by the Daily Mail and in particular, its columnist, self-appointed education expert Richard Littlejohn. Just for asking the world to accept her for what she was.

What had they done to offend anybody? answer them..

And every single person in the world who just asks to be accepted for what they are; to  have their differences respected. They don’t want to harm anyone, just to live their lives quietly and honestly. Jesus would have embraced them and brought them into his fold, offering them acceptance, protection and love. He wouldn’t have judged them, I’m very certain of that.

Jesus still accepts them, now and forever, and will be offering his protection long after the likes of Richard Littlejohn and the Daily Mail have disappeared into thankful obscurity.

And yes, I cried in church. During the hauntingly beautiful rendition of King John of Portugal’s Crux Fidelis by the Cathedral choir which followed. I’m crying now as I write this. And I’ll probably cry again when I read it next. I’m thankful that my class lab was recognised as a safe space for kids who were different at my school be they gay, trans, straight, goth, emo, whatever. And I’m immensely proud that my my church  and its clergy team provides a welcome and safe haven for everybody…however they define themselves.

But most of all, I’m thankful that my faith enjoys an infinite capacity to accept and welcome, and yes, celebrate difference and individuality…

(Image from http://www.photoree.com)

So Asperger’s syndrome is no more, and those of us with this diagnosis are subsumed into the more general Autistic Spectrum Disorder (ASD). I don’t know if I’m going to miss being an ‘Aspie’ or not. It’s a bit of a mouthful to explain to folks that you have certain difficulties in communication and social situations due to ‘Autistic spectrum disorder’!

I do know that I dislike labels, as a general rule. However, my own difficulties can be explained very well by this particular label. People like me can come across as very direct, rude, aggressive, even, in conversation, and might look disinterested, bored or awkward in social situations. I have no problem teaching classes, even those that I’m not familiar with (the ‘please take’ ) but I always have a dread of walking into the staffroom or subject base and meeting people I don’t know too well. Conversation starters have always been difficult for me. I also have no problem giving presentations at conferences, but you usually won’t find me at the pre-conference coffee session. I drive around or stay in the car park until just before registration and the start. It’s a very unfortunate situation, but it’s how I cope with strange and unfamiliar places and people. I feel more comfortable being the last to turn up for the committee meeting if its a set of folks I don’t know too well, and even saying ‘hello’ to strangers and shaking hands is a very challenging thing for me!

So if you know someone like me, with the condition formerly known as Asperger’s Syndrome, please be a little attuned to some of these difficulties, particularly if we appear to be a bit more direct, or don’t know when to shut up! And don’t be offended if we don’t maintain eye contact when having a conversation. A great description of some typical ‘Aspie’ behaviour can be found here.

 You know something’s a bit different about you. All your life you’ve been perpetually anxious about the simplest everyday things…you know, will you catch the  bus, will you be at the station or airport early enough to make your train or flight. Will you get a decent seat, will it be crowded, will you make it through to your hotel on time, will you get a parking space near your work, will you get the dinner cooked, or get the housework done, a seat at the cinema..????? The list gies on and on. You dread social occasions or networking meetings, or going out with work colleagues. You’ve never made friends easily, preferring your own company, collections, obsessions even. Everything has to be in it’s proper place, desk has to be ordered with everything arranged just so… Routines are very important and fear of the unexpected is ever-present. Socialising on line is easy, but meeting those online friends face to face at conferences or social meet-ups is nerve wracking and fear-inducing. Folks think you are unhappy because you hardly ever smile, and find social chit-chat impossible. Failed relationships characterise your personal life and you end up being scared to get close to anyone for fear of rejection.

Anxiety takes you along to your GP eventually. It affects your life in a huge way. Or problems with relationships takes you down a counselling route. Either way, anti-anxiety drugs or anti-depressant medication gets prescribed and a referral to community mental health is made. This leads to an appointment with a CPN or Psychiatrist. Each stage of this involves long discussion reaching back over whole life experiences and things start to slowly fit into place rather like pieces in a jigsaw puzzle. Because we understand a lot more about certain developmental conditions now than we did even ten or twenty years ago (let alone thirty years ago when you were growing up and at school where you were just that weird kid who did strange things with her hands, collected the strangest stuff, had an almost encyclopaedic knowledge of music, couldn’t keep still, dropped things or griped over her own feet and just wanted to be left alone) and this is no truer than with Autistic Spectrum conditions.

You get a referral to an adult Autism diagnostic service, and over the course of two or three meetings, your whole life comes under the microscope, and you finally discover that at least there’s a reason for all this, and that you’re not just weird or strange, anti-social or depressed. Being given a diagnosis of Autism or Aspergers is not the answer to your problems, but it makes it just a little easier to deal with knowing it’s not your fault that you behave in sometimes strange ways…in fact, a diagnosis is just the start, not the end, of another journey.

Now, that’s just my story, but there are thousands like me out there in the world. Undiagnosed, struggling with the things in life that most folks don’t even think about. We find ways of dealing with our lives and at least accept those things about ourselves we don’t understand. Some of us are lucky and have people in our lives who are prepared to accept the differences, the rigid thinking and quirky obsessions and behaviour, but many are not so lucky and spend their lives alone and unfulfilled. Most of us manage to get by, modelling behaviour and using intelligence to develop ways of reflective thinking and an ability to rationalise unfamiliar situations (indeed, high intelligence is a common factor amongst adults who have undiagnosed Autistic Spectrum Disorders and manage to lead fairly successful lives). We develop strategies to help us function. I used to arrive for meetings and conferences just a couple of minutes before the start to avoid the registration and coffee beforehand, and lunch breaks would often be spent catching up on work rather than socialising or networking. Strange staff rooms could be a nightmare scenario, but there is always somewhere to disappear to.

With current funding cuts, adult autism diagnosis and support services are threatened ironically at a time when they are more necessary than ever before. An uncertain future lies around the corner. Autism service providers and charities need support to satisfy an increasing demand for their intervention and support, not just for those diagnosed but for their extended families as well.

- Posted using BlogPress from my iPad

April 2014
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