Monday 19 June 2017

Dear Parents of Z

Hi, Christian parents of Z, and A.  You have written a Christian book, recently published.  In it, you talk about your children, Z and A, a lot.  Here's an extract:

I've taken the liberty of disguising the name of Z.  It's important that we don't know his real name, nor your real names, in this Blog.  To protect what's left of the privacy of Z and A.

I want to write to you, as an autistic adult who started life non-verbal.  Rocking, flapping, lining things up.  Collecting things.  I'm still that autistic person.  I simply grew up.  I have an autistic son.

I had a brain that memorised sounds.  Even if it didn't know what they meant. And later on, when I learned to speak, I knew what people had been saying about me.

I want to write as if I am your son.  I am not, of course.   He is his own person.  He has his own things to say.  But it's how I would write, if I knew my parents had written this about me.

"Dear Mum, Dad.  It hurts me to read what you wrote about me, in front of thousands of readers.  It hurts so bad. 

The things you call obsessions?  They are how I learn. They are not obsessions.  They are my passionate interests.

They are how I find a sense of peace and calm in the noise.  The incredible noise around me is stuff caused by you both.  Your house is so loud.  And it stinks.  It stinks of fresheners and cleaners.  You stink of fresheners and cleaners.   And it's so bright.  The colours, the patterns, everything around me is so intense.  So scary.  Everywhere I go, I can barely see, barely hear in the chaos.  Those intense flickering fluorescent energy-saver lights, turning everything into a weird disco to my eyesight.  Why is your world like this, and not like the peaceful gardens?

So, when I see you, my beloved parent arriving downstairs, I know you want to help me survive the day in this hell that modern society has created.  I know you understand that I need to watch something familiar.  I'm learning language, my way.  Repeating it, over and over.  I don't use your language.  My culture is different.  My body language, my voice use.  I use a whole different system.  But I want to learn yours.  I want to learn the same way as you learn a foreign language, by repeating it over and over.    I'm training my brain.

The pattern I create, with the colour and lines, the boxes, the inserts - those are my art.  In the same way that if someone came up to a piece of art you did, and crayoned over all the lines, you'd shout.  I shout.  I shout because it's such vandalism to destroy someone's art.   Someone's science. Such destruction.  You say it doesn't matter, but it does.  It matters, Dad.  It matters....

You are telling people that my bouncing in excitement at learning new words, at seeing familiar things, is wearing for you?  I don't understand.

You are saying to your readers that my flapping is exhausting for you?  Flapping is how I see distances, Mum & Dad.  Flapping is how I feel where my body is.  Flapping is how I sense the world around me.  It is different from you, yes, but that's OK.  I don't mind that you stay still and refuse to bounce.

You compare life with us to hell, in the book.  I don't know how to explain how awful it is to ponder that this is what you think of us.  That this is what you want to write to Christians about us.

I was hoping you'd be the kind of Mum & Dad that would respect my privacy.   The kind that would protect me from the world.   Save me from the embarrassment of a generation of people reading a book, saying, "Look how awful Z is!"  "What heroes his parents are for having him".  "Thank goodness for Jesus getting the parents through this devastating experience of having Z in their lives."   

I don't know what to say, Mum, Dad.

I love you.  I love you so much that I trust you with my precious DVD collection.

But, don't you know how much it hurts me, to be paraded in front of the public with my name?  For writing how much of a hero people are, to have a child like me?

Please Dad, please Mum.  Please be the parents I need you to be.

I love you."

Sunday 18 June 2017

Crumbs From the Table - Autism, Lunch and Different Treatment

I was at a conference recently.  It was about autism.  It doesn't matter which conference, because I'm just using it as an example.  Quite a common example.

The conference is about autism, yes?  So, did we have actual autistic speakers at the microphone?  No.  We had non-autistic people, 'ablesplaining' autism.

What's it like?  It was like the lunch, that day.
Like many autistic people, I have difficulties with certain foods.  Some of us, because of textures.  Some, because of taste difficulties.  Some, because of the way some foods smell.  Some, because of separate digestive difficulties.  So, a lot of us need different food, or our own separate portion rather than a 'grab it yourself' buffet.

I'd said I needed different food, well in advance.  i explained what I can't eat.  I can eat a lot of food.  I can eat fruit, salad, vegetables, baked goods made with rice, tapioca or potato flour, plain crisps, meats, cheeses, eggs, fish.  I can't eat wheat, corn/corn products, oats, nuts or chocolate. Lots of desserts don't need those things.  Lots of cakes don't need those things.  Even local supermarket stock standard stuff I can eat just fine.

The lunch was laid out for us.   Huge organisation.  Big, big budget.   Most of the delegates enjoyed row after row of delicious sandwiches with all sorts of fillings.  The photograph on the left shows such a buffet.  And huge slabs of the most glorious cake.  They could also have their choice of fruit.   In the afternoon, they could have muffins of various kinds, organic cake bars, more fruit.  

Their calories for the day, well, let's say 500-1000.

The photograph on the right shows a plate of lettuce with a couple of bits of other salad on it. My lunch, a few lettuce leaves, into which had been put a tablespoon of tinned mixed beans and a tiny amount of chopped green pepper.  And a piece of fruit.   In the afternoon, a piece of fruit again.  No cake, no cheese, no meat, no fish.

My calories for the day, well, let's say 150-250.  Wonderfully healthy I'm sure - but, unequal.

"Catering for autistic people?  Oh just give them the salad garnish and an apple".

It's an analogy for much of the way we are treated at events run for, and by, and with, non-autistic people. 

Let me be clear; some non-autistic people are fabulous.  Hugely welcoming, lovely, generous hosts.  Splendid at working with us, listening to us.

But autism conferences too often do exactly this.  Treat us as a total afterthought.  Even if the subject is autism.  Even if the particular subject is how autistic people end up being 'othered' over, and over again....and how we respond to that.  Wonderfully ironic.

I work mostly with autistic specialists, autistic friends and autistic professionals these days. 

We're not lab animals, best fed on lettuce and fruit, and spoken at.  We are people. People who can communicate for ourselves, whether we are verbal or not.   That remarkable insight is free of charge, unlike my consultancy services, which are reassuringly expensive.

Thank you for listening.

Wednesday 14 June 2017

Autistic Empathy and Caring

A good number of us in the autistic communities have been shocked by an author alleging autistic people lack empathy.

This is one myth that is not only rubbish, but really damaging rubbish.

If anything, most of the autistic people I know have so much empathy for the pain and suffering of others that they barely know how to handle it.

Let's look at how that myth happened.  I am going to generalise.  Everyone is a little different.  These are examples.

Autistic People Cannot See if You Are Sad
Imagine you have a Blind friend and you sit on the sofa next to them, looking sad.   They don't notice.  Would you be tempted to say, "Gosh, you lack all empathy!".
And yet, non-autistic people may do that to us.
We can't see face expressions that clearly.  Nor can we hear voice tone very clearly.  Not in real life social situations we can't.
So...problem one - you're imagining we can see and hear those things, and we can't.

Solution - say how you feel.

Autistic People Need Thinking Time
Second dilemma - how to respond.  Our body language is different to yours.  Our face expressions are different.  Our voice tone is different.  And....we are on a time delay.   It may take a few minutes....or an hour...maybe a day or two....but all of a sudden, bingo, we've processed this.  Then, goodness me do we feel the empathy.   Yes, non-autistic brains can be much much faster at this.

A colleague of mine explains this.  She said a friend in the street told her that she'd just had a cancer diagnosis.  My colleague acknowledged this, and went home.   Having got home, realised what it meant, and then realised how her friend must be feeling.  Then, went to a shop, bought a big bunch of flowers, and went round to give the friend the flowers and be there for them.  Hugs, love, all the usual stuff.  It was a time delay.  That can happen.

Me, if I'm not totally 100% focusing, my face can be stuck on Wrong Expression.  I'm desperately listening for key words.  Anything that indicates sadness, pain, etc.  If I hear one, it's a race to make my face and words match what I feel inside.  It doesn't always work.  I'm trying to mimic what non-autistic people expect to see.   Inside, I feel their pain so intensely.  But I'm inside a body that naturally speaks a different body language.

Autistic People Display Different Behaviour in Response to Your Pain
In our own culture, it can be a sign of respect to not rush up to someone and hug them.
It can be sign of respect to not overload someone with eye contact.
It can be a sign of respect to not overload someone with words.
In other words, all our 'respect' signals look just like your 'couldn't care less' signals.  See the problem here?  We're misreading each other.

Ours is designed not to overload already-hot-brains.  So we try hard to keep each others' brains cool.  Low sensory stuff.   Very quiet.  Different to you.  Not lacking empathy.

Autistic People Do Social Justice
I am so honoured to work with autistic people who are so filled with love and caring.  Especially for big social justice projects.  A huge passionate interest in fairness, in equality, in justice.  So many work in caring professions, too.

Some Autistic People Don't Have Much Empathy
And that is true for some non-autistic people too.

That's the reality.

It is a huge shame that some professionals mistook our differences for a 'lack of empathy'.  It has been so damaging for autistic people.  We have so often ended up feared, shunned, hated, left without friendships and relationships, rights and good life outcomes.

The myths need to stop.

Help us stop them.  Next time you read something that portrays us all as non-empathetic monsters, challenge it, please. And get to know some of the fantastic autistic people, of all IQs, all abilities to communicate in words or otherwise, all genders and backgrounds and ages. 

Thank you for listening.

The picture shows a number of gemstone hearts of different sizes and colours, arranged on a black cloth.

Monday 12 June 2017

Tough Talk 2 : Autism, Love, Humanity and Verbal Violence

The photo shows a wooden door.  On it hangs two hearts.  One is larger and made of a weave of grey sticks.  The other hangs within that, a white heart.  It was a photo I took when visiting a beautiful scented garden, on holiday with my much loved partner.

It symbolises, for me, the love inside of every person.  Without doubt.

I'm autistic.  For the first ten years of my life, I could not use words to communicate meaning to people.  I could copy words, but it was just a sound.  I could write words, but they were just a pattern.

Some would say that I could not possibly have understood God.  That, to understand God, and love, one needs a grasp of language.  An intellect.  A sense of self.  A sense of what non-autistic people need, and think, and want.  I had none of those things.   But...

I knew God existed.  I felt his love.  I learned about God, and Jesus, from pictures.  Pictures were, and still are, my brain's language, and God speaks picture.  He speaks love.  He speaks the very language of the person he created.  God was there.  Right there with me.

Today, I read some of a book by a theologian.  It was so bad that I actually dropped it in horror.

It is verbal violence, arrogance above all other arrogances, for someone to declare people like me to appear to be non-human.    Appearing non-human because we could not speak as others do.  Non-human because surely people like us can't actually BE human, eh?  To write that there's nothing human to see, so we have to trust Jesus knows what he's doing when he says we're humans too?  Goodness me.   Oh my.  Is that what some think Jesus said?  Really?

It is verbal violence, and arrogance indeed, to assert that when we get to heaven, God will cure us of autism whether we like it or not.  To declare that those of us who worked for years to learn language...who are still sometimes non-verbal... are 'high functioning' and therefore know nothing of supposedly-'low functioning' autism.  Hands up all those who want to be described as 'low functioning'?  How absolutely awful.   What on earth is 'high functioning'?  We know how many supposed 'high functioning' people die horribly early. So much for that pointless label.  Our deaths too often a result of the hate, the othering, the exclusion.... the careless verbal and physical violence so many of us endure so many days of our lives. 

And it is appalling to speak for us, without permission or insight,  only to declare our apparent inhumanity...our brokenness... as if we can have no experience of God of our own, no love, no caring.  As if we are not beautifully and wonderfully differently made.

We show caring in different ways to others, sometimes.  It can be in honouring silence, in respecting space, in carefully tailoring eye contact not to overwhelm other autistic friends.   Our language is not 'broken'.  It is different.

We are not 'broken'.  We are autistic.  Autism is not a low IQ.   It is not a violence.  It is not a lack of empathy.  Look at the diagnostic list.  Those things are not on there.  Even lack of speech is a different thing to autism.   Yes, some have all of those. Some of any population have all of those.  But autism is not those extra things.

I cannot speak for all.  I do not try.  But I am a professional, working for and with autistic people.  Living life with my autistic family and friends and colleagues of all kinds.   And I have had a lifetime of living in an autistic mind.  

I will not have any theologian writing books that question our humanity, unchallenged.  It is not yours to question. Do you know where questioning the humanity of a group can lead?  This is no intellectual game.  This is life or death for a vulnerable group.

I am here to say that you should go and find everyone you can...and listen.  Listen with your eyes.  Listen with your heart.  Listen with your soul.  

Learn our ways.  Learn why they are our ways.  Be in our space in respectful ways.  In ways that honour own neurology, our communication choices.

Walk with us on life's journey.
Help protect us from sensory and social overload pain.
Enable our 'voices', in whatever form those take.
Love us as we are, and honour that of God which is autistic.

Listen....observe....and feel....
For you will hear a much loved child of God.  You will see humanity.  And you will feel love.

You are loved.  As you are.  
You are human.  So am I.
And God loves us all.

Saturday 10 June 2017

Impact - A Tough Talk About Language, Autism & Relentless Othering. With a huge Thank You.

The way we talk about autistic people matters.  
As we are now aware, some 66% of autistic people have considered suicide. 
Some 70% of autistic females are victims of sexual assault.
Some 80% of autistic people are victims of fraud.
Some 30% of autistic females are victims of rape.
Autistic people live on average 16 years fewer than other people because of the way we are treated in society.

I'm about to go to an important conference.  It's looking at autism and suicide.  Trying to understand why so many autistic people seriously consider this.  And why so many take their own lives, rather than attempt to carry on struggling.

The language we use matters.

I read a description of an event elsewhere.  It matters not whose event it was.  It was about disability. The description said that there were three speakers.   One had lived experienced of a disability.  Another also had lived experience of a disability. Both, adults.  And the third is a parent '..who has an extensive background about the impact of autism'. They have autistic children.


The impact of autism ...on the parent?

We don't get to speak for ourselves, at quite a number of events.  We are spoken about, by parents.  Specifically, spoken about only if we are children whose presence in the parent's life is described as an 'impact'.

Not a joy.
Not a discovery.
Not a journey of love and learning together.

An impact.

It wasn't the parent who chose that description. The description was chosen by a PR specialist for a Christian-faith-based group.  I suspect the parent was also chosen by people who assume that autistic individuals are all aged under 10.

I contacted them and explained.  So did others.  An apology was received.  They hadn't thought about it.  

That's the issue.  Quite a few people don't think.  Excellent exceptions apply, of course.

It's not one incident.  It's stuff like this every day of our lives.  Every single day.  Other disabled people mostly get to speak for themselves and are allowed to be adults.  I've observed this over many years.  In autism, we get spoken about, portrayed only as children, and described in scary language.  

What of the impact of the people who defraud autistic friends?
What of the impact of the building designers who put zero thought into autistic access for the two million of us?  With the impact on education, healthcare, employment, poverty?

What of the impact of being denied a voice?
What of the impact of those who assault and injure us?  Those who encourage others to fear and exclude us?

What of all those impacts?
Do we think it is huge surprise that so many consider suicide, after a lifetime of shaming and exclusion?

We are not an impact.  We are God's much loved people.  People giving and sharing so much love, so much friendship, so much creativity and peace.  Most of the two million of us in the UK are nothing like the myths at all.  We are people honouring the communication needs of others so very often, by attempting your scary eye attempting to use your words in your ways.  By going into your exhausting spaces to try to be friends with you.

It would be good to see us honoured too.
Honoured in being asked to speak. In being allowed to communicate autistically, without it being punished.
Honoured in being asked to lead.
Honoured in being described in words of love, not scariness.

I am so blessed with family, friends and colleagues who share love and friendship with me.  Who enable me to be me.  And, especially, those who have stood with me over the years....believed in me....helped me through each challenge I've faced.  It has been so tough at times.  It has enabled me, in turn, to keep fighting alongside many fine autistic advocates and specialists. Fighting for good support for autistic people.  For good support for parents and carers.  For good funding and good opportunities.  For research that respects autistic needs and lives.

Think about the way you use language, please.  Think about who you enable to speak.  Your choices save lives.

Thank you for listening.

And, for those family and friends, thank you for being there for me.   It means more than you will ever know. 
Is a link to the Samaritans in the UK, for those needing to talk to someone.