Sunday 31 July 2016

The Beauty of Autistic Worship and Spirituality

I am blessed with knowing some of the most creative, spiritual, caring and loving people.
Many of them are autistic. 
Quite a few of them are people of deep faith, either in Christian religion or in other major world faiths.
Occasionally I encounter a myth about autistic worship.  For example, a Priest who described autistic worship as 'a pantomine', as inauthentic, as non-listening.
Occasionally I encounter a myth about autistic people and our relationship with God.  For example quoting a passage about how it's amazing that humans can 'even' see God in people like me. 

Occasionally I hear from Christians who want to put people like me in to a category with drug users and sex workers.  There was one such person only yesterday.   In writing, too.

It's extraordinary. Where does this hate and othering come from? 

I lead worship.  As a lay leader, and in small groups.  Carefully considering the theme.  Carefully pondering the group and all those in it.  Allowing space to pray, to explore God in silence, to listen to his word, to use senses to explore.

Here's a small sample of some of the materials I put together and write for the worship sessions. These are bringing together a group of non-autistic Christian people, before evenings of prayer, learning and sharing together.  It can take hours to find the right images, the right prayers for the readings that evening.  It's a blessing and an honour.

Here's some of the sensory materials I've used with worship. 

Hundreds of others, of all kinds, over the years.

And, as we know, worship should never be about the leader.  It's about letting God be heard.  It's about enabling people to feel safe, loved, able to explore their faith.  Able to grow towards confidence and community.

Now if I can do that, and know that, as an autistic person, how is that 'inauthentic', how is it a 'pantomime'?  How is it a special gift to non-autistic people to be able to see God in 'even ' people like me?  I'm not even a Priest, nor do I have the wish to be one.  I couldn't speak properly before I was ten.  I have multiple disabilities including autism and a journey with cancer treatment, spinal scoliosis, faceblindness.

Please, please think before you write.  Because words that 'other' and dishonour our faith, as autistic people...our gifts, our love....those are not words sent from God.   

We are your friends.   And ours is a world as wonderful, as entrancing, as faith-filled, as your own.   That you may miss it?  That's a shame.  

So many lovely clergyfriends who are autistic.  Quietly, gently, kindly, prayerfully, responsibly...bringing autism's strengths to the work for God.

Watch.  Listen.  Learn.  Go quietly.  Be patient.  Enjoy prayer alongside us. 

Enjoy that-of-God which is autistic.

Saturday 23 July 2016

How to write about autism, respectfully.

20 years of reading materials written by parents and carers of autistic children...professionals and therapists? There's all sorts of material. Good, bad, indifferent, and dangerous.
I'm going to look at how we write respectfully about autism.

For a start, assume we can read it.

No, really. 

Yes, to your mind, autistic may mean total incompetence. Never reading or writing or speaking. But that isn't autism. And if you mistake autism for those things, you will get a shock . We can hear you. We learn to read. We can feel.  We can think. And goodness me some of the things people write about us are searingly horrific.

Write with love.  By all means write about your exhaustion because of lack of services.
By all means write about your lack of training.  By all means write about your despair at the unfairness of the world for us.  But...

Respect means not portraying yourselves as martyrs.  As suffering saints.  
Respect means not writing about our meltdowns and shutdowns...a part of our ways that demean us.  Ways that portray us as monsters, as deficits. As sub human. The humiliation, the shame, of such writings cuts deeply into our self esteem. The people we trusted, putting our brain events into words that mock, that belittle.  It is not ok.  It is never ok. So many of us live with a lifetime of anxiety and sadness from the negativity about us. 

I brought up a fabulous autistic son.  I am autistic.  My husband is autistic. My friends number many who are autistic. I did not speak for ten years. I am sometimes nonverbal. I sometimes flap or rock. I line things up, and collect things. I also run a company and advise the Government. And I am every bit as human, as loving, as loved, and as worthwhile as everyone else.  I and my kind are not objects of pity, not some sort of way for you to gain an award as a human being for talking to us.  Not here to give you bonus points with God for being nice to us.  Goodness me that is so hurtful, when people think like that.  How very superior.  And how utterly wrong. All are equal in God's gaze.

Write with love.  With respect. With honour. And in the expectation that your fine young person understands every word you say, and every emotion you convey. Whether they speak or not. Whether they write or not. Whether they appear to read, or not. One day, they will look at you, and wonder why you made them an object for the public to gawp at. Perhaps for money.

Do not be that parent. Do not be that professional.

Work with us. Learn about us from us. Take all the good training you can get from autistic people.

And you will find a world of honesty. Integrity. Focus. Passion. Dedication. Persistence. Fun. 

Meantime, we all work for a world where there is better support. Let's do that together.

Saturday 9 July 2016

Autism and Not Troublemaking - the Films

What do we know about autism?

We know from research that it's about 1 in 30 people, male, female, all ages, all IQs.
We know that autism is a sensory processing difficulty, with strong links to epilepsy.
Here's a fab 2 minute clip that needs sound turned right up.  This is our environment.  Look at how the boy behaves.  Is he 'attention seeking'?

Wow.  Yes, that.   That's why we behave as we do in busy social places.  That's how the world is.  Autism is a sensory processing difficulty.

Here's a film I helped advise on, by the National Autistic Society.  Again, couple of minutes, needs loud sound.

Is the boy 'just playing up', 'just needing a slap'?

We know that autism means we don't understand the motives of others.  That means that we literally cannot 'manipulate' others.  It's as impossible as a wheelchair user shinning up a 50 ft ladder to break into a building. 

Any time people think they are looking at manipulation from us, several things could be. an explanation.  For example -

The person is not autistic but has been misdiagnosed with it (which can happen in a few cases, where professionals were using the old mistaken criteria of 'lack of empathy', etc.  A few other things got misdiagnosed as autistic).

Or they are pretending to be autistic in order to gain the trust of other autistic people....because we're easy targets for fraud, sexual assault etc (seen this done).

Or they are behaving in that way not through 'manipulation', but because of a terrible fear of an autism shutdown or meltdown happening.  These, as we now know, are brain events similar to epilepsy, not 'temper tantrum' or 'trying to get our own way' or 'looking for sympathy'. Possibly they are desperate to make sense of the otherwise chaotic sensory environment around them by asking for clarity on what's about to happen next.  Well, you would too, if the world looked like it did in those films, wouldn't you.  Imagine if you had no idea what the sensory environment ahead of you was like, or how long you'd be in it.  Gee whizz you'd want to avoid extreme brain pain and exhaustion.

The behaviourists really did think autism was bad behaviour that needed retraining.  They spent hour after hour, day after day, punishing/coercing autistic people into behaving in 'acceptable' ways.  It was like punishing diabetic people for having low sugar incidents (where they can behave erratically for a while).   Or punishing Deaf people for using sign language instead of speaking properly.

But those myths of 'bad behaviour' keep following us round. 

For clarity, I am autistic.  I work with the top autism professionals nationally and internationally.  Professor Tony Attwood.  Professor Simon Baron Cohen.  Dr Wenn Lawson.  Sarah Hendrickx.  Richard Maguire.  Professor Skuse.  I could go on for a very long time listing the fantastic people I work with as colleagues, for many years now.  

I work with the Government, as their Vice Chair and adviser on the board for the All Party Parliamentary Group for Autism.  That group has some 200 MPs and Peers who rely on me and my colleagues giving accurate, timely advice.  Really lovely people to work with.

I'm an adviser to the teams behind the recent successes of the BBC and Windsor Castle in gaining autism awards.  I work collaboratively with the most wonderful people.

I run a firm of Chartered Surveyors, dealing with some 1400 excellent clients who expect honesty, integrity and absolute accuracy.  Those are the strengths that autism brings.  Banks, Accountants, Solicitors.  The major ones in the country.   16 solid years of integrity.

And I do dislike it when a group of completely unqualified people allege that people like me are just 'troublemakers' who can't be trusted.  On the basis of some alleged 'bad behaviour' that they 'recorded'.

The thing is, if you put any autistic person into a social nightmare.... where they are being bullied, threatened and frightened witless, their brain is going to go into an autism 'shutdown/meltdown'.  Our communication becomes erratic.  It's a brain event, not under conscious control, during that short time.    Bullies online know how to grab a screenshot of that moment and use it as alleged proof of how nasty we really are.  This works when people are ignorant.  And it sometimes means that bullies never get called to account for their behaviour in deliberately causing that painful, humiliating situation for the person.

Please be mindful of who you are getting information from, and what their own agenda might be.  Because there's a powerful reason for some to continue to allege that it's 'all the fault of autistic people.' 

It is never, ever OK to parade our communication when we are in meltdown/shutdown in front of others in ways that 'other' us more.  If you see people doing that, call them on it.  Because it's disgraceful.

We need a world where the bullying and othering of us stops.
Thank you for listening.    

Thursday 7 July 2016

A Spectrum of Sexuality and Gender

Each society decides what it believes about gender, and about sexuality.
In many cultures like that of England, the recent tradition was that you were either male, or female.    You either were straight, or gay.  Possibly bisexual.
Er, that was it.

It's not it at all.  Such thinking views gender and sexuality as a totally yes/no thing.

The word done by "It's Pronounced Metrosexual" is one useful guide to sexuality and gender.

It shows the five 'sliding scales' of sexual attraction, romantic attraction, gender identity and expression, and biological sex.

In other words, e.g.
a) do you feel totally female, totally male, or somewhere in between...and does that sometimes vary?

b) do you dress and act in a totally female way, a total male way, or somewhere in between...and, again, does that sometimes vary?
c) Is your body physically female, physically male, or somewhere in between?  How comfortable are you with this?
d) are you attracted sexually only to men, only to women, both, neither (asexual), etc.
e) are you romantically attracted only to men, only to women, both, neither?

Each person will have a different 'sliding scale' of this. 
But we don't talk about it.  Arguably, we haven't even had the language to talk about it.
Who has thought about there being a different answer for sexual attraction and romantic attraction, for example?

It's worth pondering, in any discussion where people want to 'take sides'.  There aren't two sides.  It's more of a wibbly-wobbly wavy set of lines, curves, shapes and patterns.
Our modern understanding may never have been what more ancient cultures understood, or meant.  Fascinating stuff, and w

Monday 4 July 2016

Autism: Brain event, not nastiness. An example for parents.

For a very long time, autism was believed to be about power, control, nastiness, manipulation, lack of empathy.  Oh, and it being 'only boys', of course.

Parents and carers were taught to use punishments or coercions to get the child to behave more 'normally'.
Autism is not a behavioural condition, at all.  Nor is it a lack of empathy for others.  Half are female.  Wonderfully diverse gender and sexuality expression, too.

It is understood now to be a sensory and information-processing difference, part of the natural diversity of humankind.
Let's look at an example of where things would be misunderstood, between a non-autistic parent and a young person.

A young person who perhaps has had to move house.
For many people, this is a difficult time.  For an autistic young person it can be overwhelming.

Look at these two pictures.  The top one shows a living room as perhaps most people might see it,
The bottom photo, how I would see it, if overwhelmed with new sights, sounds, smells, routine-changes.  I barely know where to put my feet, let alone how to find my way round it.
The intense smells of a new place are extraordinary.  The soundscape is so different.  We can hear noises from such a distance, and cannot filter them out.
It can take us weeks to settle in and start to really feel comfortable there. It's like being partially blind and deafened.

Our brains are having to work super-hard to adjust.  And that means they are already on 'hot'.  The brain wiring for solving social situations is going to be inefficient.

Let's look at autistic brain wiring,  compared to a non-autistic brain.

On the left, the non-autistic brain solving a social situation and talking about it.  The coloured area shows the bit that's working.  A sort of 'broadband connection'.   Easy.  On the right, an autistic brain, solving a social situation and talking about it. Bright colours throughout.  The whole brain is involved, pretty much.  Massive electricity, massive heat happening.  And if you keep adding more electricity and more heat, guess what happens....

Meltdown or shutdown.

Meltdown:  The brain electrocutes itself, silently.  The young person starts to behave erratically, much like an episode of Tourette's.  There may be sudden swearing, wild behaviour, running away.  It is not aimed at getting something.  In fact, giving the young person something makes no difference.  It is not a 'tantrum'.  It's more akin to epilepsy.  It cannot be reasoned with.

Shutdown:  The brain switches off the ability to think, talk, perhaps move at all.  It can look like sulking or non-compliance, or rudeness.  It is not.  It's like being trapped in a hell where we cannot speak or move, literally.

It takes about an hour and a half to cool the brain down again and 'switch back on'.  And that hour and half assumes that we're able to achieve enough quiet to do that.

70% of us have shutdowns, not meltdowns.  It's a shame that autism is always associated with meltdowns, therefore.  Lots of us never 'melt-down'.  In fact, a lot of us are so compliant and nice that our diagnoses are missed until way into adulthood.

Supposing a parent or carer's response is this:

Eye contact.  That's like an electric shock all by itself.
Loud voice.  That sounds like an explosion.  No idea what the person is saying, at all.
Physical contact, forcing the child to stay there.  That feels like an arm is in a vice.  The pain may be indescribable.  Even fairly light contact during an autism episode can feel like an electric shock, and cause a lashing-out to get away from the pain.  It's not a deliberate attack; it's a response to someone doing the wrong thing at the wrong time, and it's not in the person's control.  It's pure fight/flight/fright 'animal instinct' during the brain emergency.

The parent or carer perhaps thinks they are dealing with a temper tantrum.   It's not.
And the longer they keep doing that stuff in the picture, the longer the brain event will continue.

What to do? OK, first of all, realise that this was the very last thing that the young person wanted or needed.  They have been put in a situation their brain cannot handle, somehow.  Often the case if they come out of a long day at school, then have to try to interact with others or go to the supermarket, etc.   An already hot brain, and now faced with the impossible.

Remember - this is about reducing the temperature inside the brain.  Cool, darker room, where possible.  Or find them something safe to climb under.  Reduce noise.   No eye contact.  Only the most simple instructions for safety, perhaps backed up with a visual signal.  Perhaps a favourite comfort toy or hobby.  Perhaps a blanket or coat to wrap round them or hide under.  A pop up tent in a room can be a solution. Perhaps noise cancelling headphones to muffle noise.  Perhaps sunglasses to take light levels down.  Wait, wait, wait.   Do not take any notice of swearings - they are not in conscious control.  Yes, it's a bit bracing to be called a selection of names, but it happens with Tourette's, too, and it's part of some autistic people's brain responses.   Nor can we hear you properly during a brain event.  The last thing in the world that young person needs is parental intervention right now. Let them come to you when they are ready.  Be there, quietly, in the background.  "Less is more".  And afterwards, just reassure.  There is no point punishing someone for their brain getting too hot.  There's nothing they can do about that. 

Successful autism parenting means planning ahead for 'what is going to literally overheat this brain right now' and 'how do I get my child to that quiet cool-down space'.  If there are other young people involved in the family, then obviously compromises may need to happen.  Think ahead for those too.   Try to do big shopping trips during quieter times.  Try to think about taking emergency stuff with you, e.g. the noise cancelling headphones, a favourite something to focus on.  Don't expect a lot of chat.

We never, ever go into meltdown or shutdown for fun, or to get stuff, or to control people.  It is not in our control at all.  It is painful, frightening and exhausting. In fact, we can be exhausted for hours or days after a serious incident.  It's like assuming that a diabetic friend is deliberately being nasty when they go into a low-sugar episode.  Or assuming that a Blind friend is being deliberately rude if they fail to notice you in a crowd.

So, be our allies.  Please don't talk about us as if we are filled with hate, or trying to dominate your life.    If we're swearing at you, it's all our brain can do right now, and what it's trying to say is, "Please help me find safety".  Or, "Please help me find out what's hurting me right now", or "I don't feel well but I'm not sure how to explain it".

Can autistic young people sometimes just play up?  Of course.   Not always easy to decode, but there's a difference between the two.   A tantrum usually involves looking for attention and it stops when the young person gets whatever that was.  An autistic meltdown won't be like that.  This link is to the Girl With the Curly Hair's summary of the differences.  Worth a look.

If you are unable to find a trigger for meltdowns and shutdowns, get an autistic expert in to help.  They can help to spot what is triggering something, and work with your family to resolve it.  You can get in a non-autistic expert, yes, but they have to guess what's happening.  We actually know.  Not ego.  It's simply that we can 'tune in' to the sensory and social environment and spot the triggers, using autistic senses and an autistic brain.  Non-autistic people are not equipped with that. 

As well as my national work on this subject, and being autistic myself?  I have been parent to the most wonderful autistic young person.  Now an adult, and working with me nationally on autism and how to help families and professionals to understand it.  Been there, and got the proverbial t-shirt on bringing up an autistic child.  I've worked with groups of autistic children of all ages.  I've worked with autistic adults of all ages.  I live in an all-autistic household, and most of my friends are autistic.   Absolutely fantastic people.   Honest, dedicated, passionate about interests and specialist topics, deeply caring about social justice.  Generalising, but there are few exceptions.  

Get to know us, in ways that respect our sensory needs.  It's always worth it.
And get to know that autistic professionals are now widely regarded as the top experts in this field.  We train the other professionals on autism, and we work in partnership with them.  

Sunday 3 July 2016

General Synod - Sexuality. Who's missing?

The CofE 'Parliament', General Synod, is about to meet.  One of the big subjects this time is going to be LGBT and the church.   There are going to be more shared conversations.  Various people will be encouraged to talk, and to listen.  Some in the room will be lesbian, gay, transgender, bisexual, I believe.  It's a very confidential set of talks, this time.

We know that some 300,000 of our parishioners in the country are autistic and also part of the LGBT community.  Yes, that many.  At least.  Probably 30% of autistic people.    As we know, it's not a lack of empathy, a sign that someone is dangerous,  or a 'disease'.  It's a sensory processing difference, where we take in too much info from the world around us.  And understand language very very literally.  And need good clear rules.  Result - exhaustion and real difficulties communicating, in today's modern fast-paced world.  We know autistic people are generally more moral than others, more accurate, more dedicated to a task.  Half are female.  Nearly all are adults.  Most are completely 'invisible'.

We know from research that autistic people are as likely to be Christians as anyone else.  We're as likely to try to go to church as anyone else. 

We're also an immensely isolated people.  Most have only one 'real life' friend in the world, because our way of communicating is not the same as that of most other people.  And because we cannot access the spaces where most people meet to make friends. Including many church events in busy, noisy halls lit by fluorescent flickering lights.  Those can be like an intense strobe light for us.

What's it like to be doubly isolated?  By being autistic, and by being gay?

What is it like to disclose that to a group of Christians?

I've had very mixed responses.  I've been a pioneer of this work for some time.  I wrote the autism guidelines for the Church of England.  I'm an adviser to the Government on the subject, amongst many other places.

I've had some Christians who have been lovely.  That's super.  Including a few senior people in our church, and a good number in my local church.

I've had some  Christians who have responded by actively shunning me.  For an autistic person who already struggles to make and keep friendships, that's no small thing.
I've had some who have responded by immediately taking jobs away from me.  Or telling me that I must work for free, because they are doing me a favour in letting me be there at all.  For a population of people who are rarely employed, often immensely talented, but who mostly live in abject poverty, that's no small thing.  A very large number of the homeless are autistic people who found they could not live off nothing. 
I've had some who have told me that I should be ashamed of myself.  For an autistic person, that's no small thing.  We've lived lives where from birth, we're told that everything about us is wrong.  Or a laugh for others.  Or something to be pitied.   Shame?  Yes, we know that feeling really well. The cold, lonely street of Shame is where we are already asked to live.  Low self esteem is something we already know all about.

I've had some who have told me that they daren't sit next to me any more, in case people think they are a lesbian too.   How does that work?  Do they refuse to sit next to Black individuals, in case people think they are Black?  Do they refuse to sit next to men, in case people think they are male?  Do they refuse to sit next to someone who is diabetic, in case people think they are diabetic too?

We've barely begun to talk about the experiences I've had, with some Christians.

The ones who tell me that I am worse than a murderer if I am actively promoting equality and love for LGBT people.
The ones who tell me that I am a danger to young people, surely, if I have a different innate sexuality.  In reality, I've advised on safety for young people for decades.  And brought up a fab son. 
There's ones who tell me that I should go into 'conversion therapies' to make me act totally non-autistic, at massive cost to my wellbeing, so that they can feel comfortable being near me.

It adds to the violence, sexual assault, defrauding, bullying and mocking I get already, because I'm female and autistic.

Imagine how hard it would be to work through all of that even without being autistic.

This is my experience of the endless, boundless love of Christ, as shown to me by some fellow Christians. Not all.  Listen carefully; this isn't some paranoia.  Nor is it unusual, alas.  I am in contact with a very large number of autistic people through my work.  My experience is far from unusual. 

I am very grateful for the lovely people.  I am very glad of my local church, who have been excellent in including me.   I'm glad of an outside society that has taken such huge strides forward in understanding autism, and in understanding sexuality.

But I am very sad that we as a church have, as yet, nothing to say to the 300,000 who live a life autistic and LGBT.  Not for us the shared conversations.  Not for us the banquet of togetherness. 

In the Bible, it tells me that we are to love one another.  And pray.   So I love all who have offered us 'othering', hate, pain, fear, and shame. Who have gone to others with false tales of how awful we all are.  And I pray for each of them.  One day, we will be together in God's heaven, and people like me will be sat with everyone to that banquet. 

When, then, will there be the chance to say to my welcomer,  our Lord Jesus, "I don't want her sort here".  "She's not really suitable for this kind of banquet".  "Can't people like her sit somewhere else?"

So, when, my friends, do we get that freedom to say it now? 

Prayers assured for all in those continued shared conversations.
For peace, for good listening, for new friendships.  For good disagreement that respects genuine prayerful scriptural theological difference.

And, most of all, prayers for those who are never at that table.  Who are not able to share in those new friendships.  But whose lives are as impacted as anyone else's lives by the decisions taken.  Already-silenced voices, doubly and triply silenced.

We are your friends, and fellow Christians, too.  Whether old or young. Whether of high IQ or any other IQ. Whether verbal or non-verbal.  All are loved, and all are called as disciples by that same Jesus.

Wonderful, isn't it.
So, how do we find out what of God is autistic, and gay, together?  Who is willing to share that journey?