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.  

Wednesday, 31 May 2017

Bizarre Research to 'Cure' Autism

Here we go again.  Another bit of autism research emerges.  This one, into a drug called Suramin.

Suramin is a drug that's been around a while.  Amongst its possible side effects, arthritis, nerve damage, loss of vision, vomiting, hepatitis, bleeding, collapse, jaundice and anorexia.

A research team had the idea that it might be a suitable drug for autistic children.  They gave a dose of it to five young boys (average age about 8).  Yes, five.

They then asked the parents to report whether the boys were better behaved or spoke more, after having it...and they applied an ADOS autism test to the children more than once.  Plus some medical tests.  The ADOS test is not meant to show repeat measurement changes.  That's not what it is for.  The parents reckoned their child's behaviour had improved.   Well, it wore off after a while, and the researchers noted some side effects also.  The young people were not asked whether it improved their lives, as far as I can tell.  They were irrelevant, other than as 'lab animals', it seems.

The researcher put up a media article, saying autism rates were increasing.  They're not - we're just better at diagnosis.  The researcher also claimed that autistic people are a chronic disease.  We're not a chronic disease, we are a different brain design, which comes with a range of positives as well as challenges in today's busy, noisy world.   In the article, the researcher also said that they were keen to produce a treatment that only targeted the alleged problem behaviours (like communicating differently from parental expectations), whilst leaving 'special abilities' intact.   But, curiously, their study did not test for this preservation of 'special ability', at all. 

So, they gave a potentially dangerous drug to five young boys.  And measured success as being a change to non-autistic communication and movement.  

Am I missing something here?
We know that autism is a neurodiversity.  We communicate and move differently because that is how we are.  It is not a fault.  It is a difference.  
We know that most autistic people are not male.
We know that autism is not rising in numbers.  Diagnosis is improving.
We know that parents sometimes want to see improvement when there really is none.
We know that most autistic young people eventually do speak, and eventually do learn new skills that they were lacking at the start, just like everyone else. But sometimes on a different time trajectory.
We have no idea what the long term effects are of giving this drug to those young boys.
We have no data at all on the effects on females, or older autistic people.

Meantime, a lot of parents fed the idea that we are a 'chronic disease' will be trying to find a dodgy doc who will give their child a dose or two of this stuff.  Well, they will, won't they.

Not impressed.  Dear researchers, please try to get a grip on what autism is, and isn't, before trialling a potentially dangerous medication on children.

Thank you.

[The picture at the top showed a shocked older woman.  It's not a picture of me.  But it is a picture of how shocked I was].

Saturday, 27 May 2017

Faith and Retreat

Magdala Encounter Chapel

I give thanks for the kindness of Bishop John in allowing me to join his retreat to the Holy Lands in May.

As an autistic Christian, long travel is daunting.  But ...encountering the very stones on which Jesus walked?  Touching the smooth, cool surfaces.  Encountering the fragrant beauty of the flowers and herbs that surrounded him in the landscape.  Bathing in the light of dawn, as the sunlight touches the hills, the lake...It makes it worth every moment of anxiety, and every long hour of careful planning and preparation.

I went with a question.  And with a heart filled with worry.

In the Encounter Chapel, in the Magdala area, I found what I needed.  In quiet prayer during the service.  In being able to say what hurts in my life.  In daring to reach, in prayer, for the 'hem of Jesus's garment', hoping for healing.  I mean this figuratively, not literally.  But, the beautiful painting in that chapel was breathtaking.  It meant so much to me, as a marginalised woman in today's society.  It shows the hand of a woman, reaching out to touch the hem of Jesus's clothes, unseen by him.  She hoped for healing.  Just by even that tiny, tiny action.  Such was her faith.  Healing, physical, and spiritual, after a lifetime of being excluded from society because of a situation not of her making.  She was healed.  He put her back into society, through her faith, through his power.

I came out at peace.

Truly blessed with the wonderful people who shared that retreat.  With all of the lovely people of all cultures, faiths and backgrounds that we met as we visited the Holy sites.  With the kindness of the airport and airline staff who helped me get there and back safely and without added anxiety.  Thanks to lovely family who knew how important this was to me, and who sent me with their own blessing. Coping without me is not a small thing, for them.

Mostly, huge thanks to the wise leaders of our Retreat.   They allowed me to travel in a group of people of amazing minds and superb verbal ability. People of great knowledge of faith and huge public authority.  It was such an honour to be a small part of their journey.

It meant so much.

After the recent journey with cancer, and its aftermath, each day is a gift I may never be given again.  I may live a full life, thanks to the team. But one never knows, after cancer. I may never be able to return.  So, I keep each precious moment in my heart.

Wednesday, 10 May 2017

Autism and Violent Crime: Autistic people more peaceful than others on average.

Are autistic people more violent, on average?  The results are in, as they often say on the TV. 

15% less likely to be violently criminal than other people. (That's what a rate of 0.85 means).

The exception was when autistic people also had ADHD or a conduct disorder.  

So, it seems autistic people are, on average, more peaceful than other people.  15% more peaceful. This adds to the data we already have on autistic people being generally more moral, more honest, more diligent.  Generally more able to detect the first signs of danger in the environment, thanks to different hearing and vision. 

Tell me again how removing us from the gene pool will help everyone?   

Glad of the marvellous peace-campaigning autistic friends and colleagues.  Glad of the many patient loving autistic parents and carers.  Glad of the wise and noble autistic friends aplenty who share my life.  We are generally a force for peace, for progress, for social responsibility.  Yes, exceptions will apply.  The exceptions are very visible, and it's easy to think they are 'autism'.  But, there are exceptions for all kinds of people.  Short people, tall people, people with size 7 feet, people living in towns beginning with the letter P. Saying violence is part of autism is simply incorrect.  Violence isn't part of the diagnostic criteria.  I wonder how many autistic people have had to live a terrible life, because we've had autism and conduct disorder mixed up, for example?  Do we need better training for diagnostic teams, so they can 'unpick' autism from other things, and assign behaviours to the correct thing?

Dear media, please get a grip on what is autism, and what is a combination of things, or something quite different.  Autistic people are already hugely more likely to be victims of crime, victims of fraud, assault, rape, bullying, ostracism.  Autistic people are already likely to die some 16 years earlier than others.

This mostly peaceful and gentle population deserves better.

Sunday, 30 April 2017

Behaviour: On Trying To Change Autistic People

I'm going to talk about autism.  Specifically, autism.  Not separate speech/language conditions.  Not learning disability.  Not mental health. Not personality disorders.  I will also generalise throughout.

I'll use the US diagnostic list for autism.  DSM 5.  If we re-translate it into autistic community language, it reads rather more respectfully.  So I shall do that:

a) We use body language differently to other people, including eye contact.  Eye contact is described by most autistic people as painful, overwhelming, as stopping us listening to others if we have to do it.  We do not stare into eyes to convey meaning.  Ours is a different body language and eye contact system to yours.  We understand the body language of other autistic people.  We don't understand yours too well.  Our way of detecting emotion, and displaying empathy, is therefore different.  The same is true the other way round; most non-autistic people are rubbish at interpreting our use of body language and eye contact.  Most non-autistic people are rubbish at empathising with our emotions.

b) We use conversation differently to other people, for example to add information, not to use 'social lies' to improve our social status and group popularity.  For example, "Oh you look so well!" when the person doesn't look well.  Whilst appreciating that telling minor lies to one another is a standard way of interacting for many non-autistic people, we just don't do that.  It's very bizarre, frankly.  We build friendships differently to that.  We also don't need to be a higher rank than other people.

c) We play differently and socialise differently, often preferring to work in parallel to others, not facing them.  Our hobbies are our intense interests and specialisations that go on to become our passionate expertise and possible careers.

d) We may repeat words, whilst we are learning them.  This is because of the difference in brain wiring.  Being able to hear the words again allows us to process them.  Or we may use a different communication system completely.  Sound, picture, movement.  In the same way as a Deaf person using Sign Language will use their hands and body, face expressions and eye contact differently.  We do not tell Sign Language users to keep their hands still as it's embarrassing. Well, I hope we don't. I leave you with that think about it...

e) We may use our bodies to help us 'map' our surroundings.  In the same way as some animals use sound to locate things, we may use repetitive sound to do the same.   Or we may use our hands flapped in front of our eyes to help our eyesight judge distance (which we do differently to others).  We may use rocking or flapping as a way to sense where our body is at the moment.

f) Most of us have extreme sensitivity to some sensory things, and this may result in us experiencing particular lighting, sounds, smells, textures, pressures, temperatures etc as extremely painful.  Or as extremely cheering.  Ours is a different sensory world.  We will need to move away from painful places.  So would you, if you were in pain.  It's quite a normal reaction, isn't it.

So, that's autism.

Nothing about lack of empathy, or violence, or low IQ, or self-harm.  Odd, isn't it, because we get a lot of people who tell me that Behavioural Therapies are improve empathy, stop violence, stop self-harm, and improve IQ.   I'm probably pleased to think that this would work, but that's not autism.  That's a whole different set of things.  Yes, some autistic children may have those too.  The same as some children with red hair may have them.  Or some children with size 5 feet.  Or some children who are Black.  Or some children who are white.   Those things  - violence, self-harm, etc, are not criteria for autism.  It's true that if an autistic child also has some of those other things, they're very likely to get diagnosed faster...or indeed diagnosed at all. Autism by itself is very law abiding, moral, honest, fair.  Generalising.

So....what do we mean when we say '...this behavioural therapy will help my autistic child'?

Do we mean that the team are going to coerce the child to socialise entirely in ways alien to an autistic child... instead of encouraging them to find friends who 'speak their language'? to make them socialise even when exhausted and in pain, desperately needing a break?   Or do we mean they are teaching them how to interpret the language and culture of the non-autistic people around them?   And teaching the non-autistic people how to interpret the language and culture of autistic people?  Developing mutual respect for difference, and mutual understanding of those differences?

Do we mean that we are going to coerce the child to give up their passionate interests, their specialisms, and do the things that please us instead?  Or to find ways to use that skill set? I was told to stop focusing on horses and maps for so many hours.  I went on to run a Surveying company, using maps, valuing equestrian property.  Go figure...

Do we mean that we are going to prevent the child from learning language in their own way, e.g. repeating words, in order to make it easier for ourselves to be around them?

Do we mean that we are going to prevent their natural movement, their way of sensing the world around them by using their bodies...their way of staying calm and realising where they are....?  

Yes, if a situation is unbearable for someone, then something could do with changing.  Does it have to be the autistic person that changes?  Serious question.  Many therapies assume the answer is always 'yes' and that the autistic person must always be the one who changes by 100%.  Is that true, though?

I'm all for respectful therapies that treat autistic people as whole people, as people with a different way of being, a different way of interacting.   Who treat us with the same respect as they would a Deaf person using sign language, and allow us to use our bodies and our signalling in our own best way.   Who teach others about us, instead of making us do 100% of the adapting, 100% of the change, no matter how exhausting it is, no matter how spirit-crushing it might be.  No matter how many tasty treats are given as a 'reward' for giving up all that we are.

You see, if I am in a world that says to me, "Ann, everything you are is wrong...", and I am taught that I must be entirely not-me, in order to please respectful is that?  Who has 100% of the power here?  100% of the control?  Why do so many autistic people end up committing suicide, after a lifetime of hearing how 'wrong' we are?  That's a serious question, too.

If you believe your child is in a respectful setting, where their autism is valued, encouraged, and they are given the skills to use their bodies and communications their best autistic way, great.  I'd support any therapist who starts from that basis.  I look for settings where teams know that some 30% of autistic people are LGBT, and respect that.  I look for settings where teams know that autistic people communicate differently, and are able to communicate our way also, when needed.  I look for teams that include autistic people.

If you or your child's team are confusing autism with a lack of empathy or a tendency to violence...and convincing themselves that the therapy for these is treating 'autism', you need to have another look at the diagnostic list.  

Certainly, we need to make sure that every child and adult of every sort is safe, and well, and able to learn basic self care skills where possible.  To stay safe and to find the right friends and the right path for themselves.   Any good, respectful parent, teacher or therapist will want those goals.

Erasing autism is not a goal that anyone should aspire to.

You are blessed with a wonderful child. Someone bringing something different to the world.  If we take the pressure to conform off of them...and the pressure to endure impossible social and sensory situations...and we learn about autistic difference....let's see how brilliant that shared journey of life can be.

Thank you for listening.

[The picture at the top shows a grid of identical pawn pieces (of the sort you might find in a basic chess set), shaded red.  Amongst them, one white piece.  It signifies someone who is different.  Should our response be to colour them red?]

Saturday, 29 April 2017

Autism, ABA and PBS: Some questions

The picture above shows a slice of brown granary bread, spread with peanut butter.
The picture below shows a peanut butter sandwich made from white bread, with the crusts cut off, and with strawberries and grapes on the white plate.  There is a salad garnish on another plate.

Why am I showing you pictures of peanut butter sandwiches and spreads?  It's going to be an example.

Supposing you are made ill by eating peanuts.  You go to see someone, and they offer you the slice of brown bread with peanut butter on it.  "But I can't eat peanuts - they make me ill".  "Oh, I'm sorry,", says the person, "In that case, how about this sandwich instead?"  They offer you the white bread peanut butter sandwich with the fruit.   "But that's peanuts too.  I can't eat peanuts - it makes me ill", you re-explain.  

"This is different", says the host.  "It's not the same thing.  It's got additions, and it is differently arranged. The crusts have been cut off. It's different bread.  It is definitely not the same as the other peanut sandwich".

Are they telling you the truth?  Sort of.  It's not the same as the other sandwich, true....but...
Would you still be ill if you ate it, if you are ill after eating peanuts?   
Yes, you would still be ill if you ate it.  It still has peanuts.

Rearranging ingredients and putting fancy things with it does not change the basic fact.  

So, let's look at another interesting one.  Autism, with Applied Behaviour Analysis, and with Positive Behaviour Support.  I'll call them ABA and PBS.

Both are behaviour modification schemes, designed to analyse the behaviour of autistic people...and change the behaviour.  Both are based on Applied Behaviour Analysis.  We know this from the materials produced by the ABA and PBS specialists.  In the journal, "The Behavior Analyst Today (Vol.10, 3&4) we learn that, "The science on which [ABA and PBS] are based is the same....  The same technology of behavioral science is used by both groups...  We all utilise common procedures...PBS is a natural extension of ABA...the conceptual care and values of PBS and ABA are the same. (Dunlap et al, 2008) "

The National Autistic Society in the UK recently advertised a job in one of their schools.  "Behaviour Co-ordinator; Education and Certification - essential.  A minimum of a Professional Diploma in PBS or equivalent.  Examples of equivalent qualifications are MSc Post Graduate Diploma Analysis...and MSc Post Graduate Diploma Applied Behaviour Analysis".

The two things are equivalent, according to the biggest charity in autism in the UK.

If we look at the training for PBS, it asks the students to study ABA.  The books are ABA.  The materials are ABA.  And there are some additional things as well.  A quick search of the internet reveals endless other sources within the ABA industry explaining that PBS is a variety of ABA.

Look at the picture of the plate, above.  There are some additional things on the second plate of peanut butter sandwich.   Does adding the other things mean that the person is going to be OK with the peanut butter, this time?   Does adding the other things  and calling it PBS mean that PBS is a different thing now, therefore OK?  

What about if we made the peanut butter sandwich smaller?  Would that make it safe to eat?

What if we make the ABA component smaller?  Does that make it safe for autistic people?

Let us remind ourselves of the words of a main founder of ABA, Mr Lovaas.

You see, you start pretty much from scratch when you work with an autistic child.  You have a person in the physical sense - they have hair, a nose and a mouth - but they are not people in the psychological sense.  One way to look at the job of helping autistic kids is to see it as a matter of constructing a person.  You have the raw materials, but you have to build the person".  

What a very interesting starting point that was.  Not really a person? Am I not?  Is my son not a person?  What about my husband?  My friends?  My colleagues?  None of us have had therapies.  Perhaps we're therefore not people....?

When I look for a good therapy, I look at how respectful it is.  How much it values the equality of autistic people.  How much it values what we can teach others, what we can bring to society.  How much it makes itself accessible for autistic people to lead that therapy, to teach, to write, to create. Whether verbal or non-verbal.  Whether of high IQ or any other IQ.

I've made quite a study of ABA and PBS over the last couple of years.  I know a good number of ABA and PBS practitioners.  I have seen the methods.  I have the training materials.  I have the books.  I have seen the course content.  I'm a professional, working in autism, and autistic.  I train the Royal College of Psychiarists, alongside my fellow autistic professionals.  We train Psychologists, Psychotherapists, schools, colleges, organisations across the country. We haven't just 'fallen off the back of a turnip truck', to use a phrase. We  know what a good therapy should include, and what is a really bad idea.

I think I shall echo the words of the National Autism Project, in their report, "The Autism Dividend":

"Positive Behavioural Support in the form of 'active support' may work for some children and families - but this approach is not suitable for everyone, and indeed is not without controversy".

In fact, as far as anyone can tell, there has been no good long term independent research into the use of PBS and autism.  We have no idea what the impact is of using this behaviour modification approach on autistic individuals in the long term.  It is approved for use with learning disability, and has therefore been assumed OK for autism. But autism is not learning disability.  Autism is different.  Very different indeed.  I've read so many examples of PBS assuming that a child has to be taught to socialise in non-autistic ways.  Taught to socialise through every lunch time, every break time, every after-school event.  If they can socialise just like they're not autistic, they're 'accessing the community', and that is the goal.  "Indistinguishable from our peers".  Perhaps allowed a tiny flap or rock, if that's not inconveniencing anyone else.

Of course, some ABA and PBS practitioners use a set of techniques that doesn't include the problematic core beliefs and aims.  Their version isn't really ABA or PBS at all.   That's not what I mean.  Of course children or adults who are doing something dangerous need to do something that isn't dangerous.  No-one is questioning that.  That is not the subject of this discussion. This discussion is about which approaches are respectful, effective, and appropriate for autism.

I understand that the Westminster  Commission in the UK is looking at this matter.  I would suggest that ABA and PBS needs some very thorough and continuing research.  Because we are gambling with the lives of an awful lot of children.   The suicide rates for autism are already stratospheric.  I note the legal cases in the USA from some individuals who believe they were deeply damaged by some therapies.  If we're wrong, and we are in effect doing the same thing as the highly discredited and damaging 'gay conversion therapy'.... we are setting an awful lot of children up to have serious consequences later in life.  No matter how 'positive' the title of the product.  If an autistic person wishes to have ABA or PBS, and it is their personal, considered choice, great.  No problem with that.  

How sure are you that this the right therapy?  I shall leave you to investigate for yourselves.  Read the words of autistic adults who have expressed their views on ABA. is one example of thousands. is another. Some are more positive about it.  But it depends how confident we feel in saying that the many negative accounts are not important.  It depends how confident we feel that the local offering has nothing damaging in it.  With so little research, we're guessing, I would say.

Decide if adding things to ABA makes it harmless.   If the 'key ingredient' of both systems is the belief that we are (in effect) behaviours that need to be modified, to make us like other people, is that a good thing?  On what set of measures is it a good thing?  Are autistic people broken versions of 'real people', or are we are neurodiversity?  ABA and PBS largely assume the former.  The emerging autistic communities assume the latter.

Was it a good thing to make gay people pretend to be straight?  To ensure that they had access to the straight community and could lead 'normal' lives?  To 'prevent them being bullied'?  To 'ensure they could have the same things as others'?  

Is it a good thing to make autistic people pretend to be nearly completely non-autistic.... by rewarding them a lot if they pretend to be neurotypical,....  and 'extinguishing' any autistic behaviours that non-autistic people don't approve of?  By setting them goals that apply to non-autistic people?  Yes, we all need to be able to access basic things.  And there are a lot of different approaches that enable that.  Most of which are not ABA or PBS.  

If you say to an autistic person, "This is a good thing", and you are a professional in a position of power over them, are they going to trust you?  Are they going to agree with you that it must be a good thing?  After all, you said it was.  Very literal people, autistic people.  Very likely to assume that others are saying things that are accurate.  Very likely to believe them. Generalising, of course.

That's a lot of power to have over autistic lives, isn't it?

I leave you with those questions.  And I look forward to professional discussions with colleagues nationally on this subject.  

We need better answers than, "PBS isn't the same as ABA".  

That's not good enough.