Sunday, 29 July 2018

What do I mean by "We're OK being Autistic" ? #TakeTheMaskOff

A sign showing the words Autism Acceptance


I'm OK being autistic.

Just saying that is controversial.  There are all sorts of responses, when autistic people say that.  For example, "What about people who are really suffering?  Are you some kind of autism supremacist who doesn't care about Real Autistic People who are Really Suffering?"

So, it's important to explain what I mean when I say, "I'm OK being autistic".


For a start, I'm autistic.  Readers of this blog (and my continued thanks to the 40,000+ of you) will know that I was not able to use spoken words to communicate, for years.  That I would rock and flap, lining things up, practising the same thing over...and over...and over...and over.   That I couldn't build friendships.  That being under fluorescent lighting even as a child had me running at top speed from it, blinded, crashing into people and things.  That trying to access a simple event like a dance class or a school play or party would leave me shaking with fear and hiding under whatever I could hide under, to escape from the sensory hell.  And I have an autistic son.  And partner.  And friends.  And other family.  And colleagues.

I'm autistic now. Always will be. But thanks to a lifetime of being told that I must disguise the pain, at all costs, I learned to mask.  To put on a false front, be the person that others wanted me to be.  Smile when in pain.  Be really nice when in pain and remember every one of my manners, even if non-autistic people can get away with being angry or snappy sometimes.  We're not allowed that.  Cope when in pain.  Not Be Me.  Never, ever be me.  Never.  If I was the real me, I would experience hatred from others, more isolation, more loneliness, more condemnation, more false accusation (because of ignorance of autistic culture and communication).  All whilst trying to work and care for family members.

And, do you know what happened?  It broke me.  It took a lot to 'put myself back together again', and now I work differently.  Because no-one ever, ever wants to experience being pressured until they collapse from it.

I look around at my fantastic autistic family, friends, colleagues.   The ones who have done the best masking, the best disguising?  Broken.  Or sitting amongst a trail of debris from broken relationships, broken job situations, broken health.  I look at the research showing the suicide rates, the average age of death (54).  Not from some genetic malfunction.  From relentless pressure, relentless humiliation and pain.  Anyone would die early from that.  We need less focus on pleasing shareholders with news about 'genetic cures', and more listening to autistic people.  Sorry, people hoping to make a huge profit out of drugging us or manipulating our autistic genetics.  What about giving us adapted lighting instead, or jobs based on experience not interview?  No money in that for you?  That's a shame, isn't it.

We need more realising that actually we don't need to be in that level of pain.  


How much of that pain and exhaustion is because society makes life hell? I know that many of my most 'routine-based' difficulties stopped when I realised I was in sensory pain.  I had no idea that I was in pain all the time, because it was 'all the time'...so I thought it was normal.  I just thought everyone was encountering the world like me, and I was just getting exhausted and stressed and panicked for no reason.  Once I adapted my life more, much of that pain stopped.  Much of the resulting stress stopped.  One example, yes - but a useful one.

There is a myth that if we disguise being autistic, it'll all go away. The future will be lovely.  All will be well.  A myth that autism was some sort of behavioural choice by us to annoy people around us, so if we stop the behaviour, we've 'cured' the autism, we've given autistic people their lives back.  Rhubarb, to use an apt word.

It's a myth.  There is no perfect future from having to pretend we're not ourselves.  Only the extra hell of having to mask each day.  

So...

I'm OK being autistic.

I'm OK with you being autistic.


And, like so many other people, I campaign for a world where autistic people are not expected to be in pain all the time. 

Where we can acknowledge and accept that we process things differently, and build a world together where everyone benefits.  

Where buildings are better for everyone (and also helps autistic people).  Where shopping is better for everyone (and also helps autistic people). 

Where schools are no longer an endurance course of pain and fear (which will help everyone, and especially us).  

Where transport is accessible. (And hurrah that in the UK, autistic people learned today that we'll be able to apply for disability parking badges.  I was one of the people who campaigned for that too, so that e.g. families struggling with an autistic child, in traffic, can park closer to places and have less risk of death or injury).

I campaign with others for a world where families are properly supported, where accommodation is given to people which doesn't cause sensory hell.   Where people are enabled to work, enabled to access healthcare and education, enabled to access and contribute to the whole of society, faith, culture and learning.  

We have so much to offer.

So, lovely readers, that's the sort of things I mean, when I say, "I'm OK being autistic".


And, if you are serious about making a difference to the lives of autistic people, you'll want that for us too.

Look for the hashtag #TakeTheMaskOff on Twitter for more information.  Find out more from as many #ActuallyAutistic people as you can.  All sorts of us.  Whether using spoken language or not.

Thank you for reading.





Saturday, 14 July 2018

Let's look at why "Autism is the most expensive disability" is untrue.

Piles of coins, increasing in size. Over the top, an arrow pointing upwards.

Are you in charge of paying for autism care services?  Or a parent of an autistic young person?  Staring forlornly into your budgets, wondering how to pay for the costs?  Read on.  You may save yourself £millions.

Have you been given an impressive speech by a group telling you that (e.g.) "Autism is the most expensive disability over a lifetime.  If you pay us a mere £50,000 a year, we can save you a fortune in the long term.  We use our patent evidence-based method and we turn Really Expensive Autistic Patients into much cheaper ones that function." ?  [paraphrased]

It's all very plausible, isn't it.  Quite a few of them will use very attractive salespeople with impressive-sounding qualifications, who use every persuasion skill in the sales book.  You will swoon with enthusiasm, reaching for that pen to sign up.  Perhaps they'll offer that seductive thing, the free course.  "Come on our free course (and we'll convince you that you need our really expensive services, ha ha!)"  If there are autistic people in the room, you'll be able to guarantee that they are only there as walking zoo exhibits, incentivised to give a speech about how their life was terrible, but now it's better.  Stop and think, please.

Did I say that I worked in national sales for years?  And that I've run a national business for years where we have to hunt our income, day in, day out?  I've been on all the sales courses.  I've taken all the 'techniques' training.  I know it when I see it.

Let's debunk each part of it, very carefully.  Because I do want the best possible lives for all autistic people, and their equally lovely families....and I'm concerned about some of the things I'm seeing out there.  Let me also be clear that some therapists in all areas are good.

I don't want you scammed.  I don't want your autistic chidren/residents in care homes to be treated appallingly so that the scammers can make even more money out of you.  How? By saying, "Gosh, Jonny's displaying challenging behaviour again thanks to [false new reason]. We need to put in extra investigations and a new (e.g.) behaviour management plan at a mere £20,000, and that will solve it.  Yes, we'll take direct debits.  What do you earn?  Just hand it over".  Whilst being clear that good care exists, I've seen some of the scammers actually do things to the residents to cause them pain and distress, just so they can charge you extra money to fix it. They don't want your young person out of that particular too-expensive and inappropriate care home.  If they left the care home, they'd have to close the care home.  There go their jobs.   

First, let's start with the realities. 

There's around 2 million autistic people in the UK.  You'll hear it's less than that, but the research shows very clearly indeed that it's about 2 million.  There always have been about 3% autistic people.  We became more 'visible' when society got louder, busier, more demanding, more chaotic.

Less than 2% of autistic people are in expensive care homes.   The figures you read about the 'cost' of autism usually assume that nearly all of us do not earn money.  So read those with a cynical eye, please.  My firm pays around £150k in tax a year into the economy and indirectly provides hundreds of jobs in the construction industries across the region.  None of that is factored in.  Only the worst examples are factored in.   Odd, isn't it.  Lots of autistic people can go on to do similar highly specialised work.  If people will bloomin' well let them.  Some cannot, and of course there need to be good services and support for people who cannot work.  No problem with that at all.  And it is certainly true that some parents/carers have to stay at home to look after autistic people, which means they can't work either.  Again, we need good support around that.  Is that nearly 100% of autistic people and their families?  No.  It isn't.  At all.  Nowhere near.

A good half of autistic people in international surveys (Germany, USA) are in full time paid employment.  You'll read that only 16% are in full time jobs in the UK. Odd, isn't it. Why would autism in the UK be more of an employment 'no', compared to other countries?  An online informal survey of nearly 300 people here shows that 27% were employed full time, 24% part time - and the survey didn't ask about self-employment.  So we can assume that the actual figure is higher.  Ancedotally from 30 years in the Professions, the amount of autistic lawyers, surveyors, accountants, engineers, specialised niche trades, Doctors, Psychiatrists, etc is substantial.  We get a lot approaching us, quietly, after training, to say, "You are the only person I've told".  They're not filling in the charity surveys on employment.  They're hiding, afraid they'll lose their job if they disclose.  We have a lot of autistic people in employment.  Some say that it's better to assume it's a really low figure.  I believe the low figure is inaccurate, and plays into the hands of those who wish to see us as a burden that needs engineering out of the genetic future.

The figures about 'cost' assumes that the 16% figure is right, and assumes that the rest of the autistic population do nothing all day apart from draw scribbles or flap.  I'll certainly admit that most of us are under-employed, because employers won't hire us, or make it impossible for us to be hired.  That's not an 'autism cost'.  That's the cost of employers not being given basic info on autism.  That's the cost of buildings being fitted with enough noise and lighting hell to stop us working.  That's cheap to fix.


What are most autistic people doing all day?  Examples from the surveys (big numbers surveyed, not just a few mates)

Working.
Looking after their families
Doing voluntary work

Supporting one another online
Campaigning for a better and more fair world.
Crafts, arts, music.  A hundred other useful things for society that we don't translate into cash.
Adding to society, in other words.

Is autism a disability that need curing at all costs?  No, it's a permanent brain design difference, bringing strengths as well as challenges caused by a busy noisy social society.

Our brains generally do take in a huge amount of info, compared to other brains.  This can be a good thing, not just a bad thing.


Do most autistic people want a cure?  No, survey after survey shows that most do not want a cure.  Most are happy being autistic.  They would like lives that are adapted so that they cope with the noise and chaos of the surrounding world in better ways. Society insists on making education, healthcare etc into a sensory hell, and we have to navigate it.  Headphones, sunglasses, different clothing, etc can make a big difference.  That's really cheap to achieve for a lot of us, with a small budget from a provider.  Hold that thought....that it's really cheap to achieve for a lot of us ....because it is.  If you know what you're doing.  If you ask the autistic person what helps, after having autism training from autistic people, so you know your subject.  If someone really wants a cure for autism (rather than the pain they're put in by others), fair enough.

So, autism costs society all that money, does it? 

I'll challenge that further.


Look around you right now.  How much technology can you see in your house or office?  Autistic people designed much of that, came up with the ideas for much of it.  And got paid peanuts, probably, to use a phrase.  Look at the famous art prints on your walls.  Many by autistic artists.  Listening to music?  Some is by autistic musicians.  Driving home in a vehicle, designed and built by autistic people, over a bridge designed by autistic engineers?  You bet that bridge works.  We built it.

Your infrastructure relies on autistic people, all day, every day.  Society makes trillions out of autistic minds.  Capable, determined, passionately focused, fair, honest minds of the sort that fill the professional practices across the country.  Autistic lawyers, surveyors, bankers, accountants, doctors, scientists.  Getting it right.  Challenging nonsense.  Stopping salespeople from selling 'snakeoil' to people.


And, every single autistic person -whether able to work or not - whether in a care home because of profound multiple needs or not - is a person of value, a person whose life needs to be free of pain and fear.  A person whose life needs to be honoured and enabled.  

Each family is a family that deserves good support, good time to themselves away from caring responsibilities.  I want to be clear about this, because it's too easy for some to say, "Oh those autistic adults have no idea what being a parent is like".  I'm a parent.  Of an autistic son.  Yes, I do.  No, he wasn't 'mild', and still isn't.  He's fantastic.  Also, an autism consultant, and changing the lives of so many autistic families across the UK.

But, someone realised there was a way to say that there is Big Money in 'fixing' us so we're not autistic any more.  And Big Business likes Big Money. 

So, the myths started.  About cost, about danger, about tragedy.  Who wouldn't pay a fortune to fix a tragedy?  Also, about disability.  It's a fault, a deficit, something's gone 'wrong', you'll be told.  Except it isn't, any more than being gay is a fault and a deficit and an opportunity to cure.  Groups tried that, too.  Remember that being gay was in the mental health books, and people made a fortune out of 'gay cure therapies'.  Now those are being banned after the gay people said how much damage those therapies did. Guess what some autism 'therapies' are based on?  Same techniques.  But now used on people who can't say that it hurts, or aren't believed when they say it hurts.  Genius....well, evil genius. I'll call it that, because I've seen some stuff that I'd count as evil genius.

Because autism itself isn't a cost, danger or tragedy, it was important to only showcase people who also had severe learning disabilities, couldn't talk, and displayed extremely problematic behaviours sometimes (actually, mostly extreme distress...).  These were carefully called 'real autistic people'.  And anyone like me who learned to talk was called a liar. Because, in this myth, autistic people who can talk aren't autistic, you see.

Parents were fed this nonsense and (in some cases) actively encouraged to block autistic people from speaking to the other parents.  That way, the cure industry had 100% control of the message, and 100% control of the parents.  I've been blocked from a number of behaviour-analyst groups for asking perfectly polite questions.  The moment they realised I was autistic, whooosh, gone.  Odd, isn't it. 100% control of the message is something you see in cults, too.  I leave you that thought.

We now had the perfect hunting ground for some in Big Pharma and some in the Behaviour Industries to make their money.  An opportunity to 'cure' autism, this thing that allegedly costs billions a year for society.  Drugs, genetic engineering, expensive intensive therapies.  Scaremongering amongst parents and carers.  "If you don't act fast, your child will be a dribbling wreck forever! Sign the form, quick!"

It's awful.  And it gets worse.  So much hype has been put into 'cure them at all costs' that we see autistic children being fed bleach to 'cure' them.  We see autistic children being quite literally tortured in care homes as extreme 'behaviour therapy' techniques, and ending up with severe mental health conditions as a result.  Grateful to Government people who are looking at this and getting some of the worst of it banned.  Grateful to fellow autistic people who have campaigned hard for this, too.  At great personal cost, taking on group after group who were scaremongering the parents and throwing hatred at the autistic people.  Meantime, we have made society so bad for autistic people and the scaremongering so effective that our quality of life is often really awful.  That's not 'autism' that did that.

Meantime, also, some parts of the industry have invented their own qualifications.  A fascinating thing to do.  They first thought of all the ways to misrepresent autism, then they thought of ways to pretend they could cure it.  They'd call it something fancy, invent folders of carefully colour coded information to make it look impressive....then set about following autistic people, making impressive-sounding notes, for week after week.  Pretending this was analysing us in useful ways.  Whilst giving themselves their own qualifications in it, set up by their own groups, based on their own evidence.

It usually isn't analysing us in useful ways.

In my view, it's sometimes the biggest money making scam I've ever seen.  So impressive, in fact, that I could almost applaud it.

Except, real people are suffering as a result.
And your budgets are suffering as a result, too.

I go into care homes to assess the care of autistic people of all kinds.  Some, very good.  Others...
I meet the impressive teams with their colour coded folders, who tell me nonsense about the person for an hour or so.
I meet the person.
I note several key things about the person that they had all missed, because they're not autistic and hadn't realised *why* the person was behaving in that way.

We alter the situation for the person.
The person is able to lead a pretty normal life, no longer in pain and distress, and can be put back into better and better settings costing less and less money.

No folders were used.
No weeks of following the person round were needed.
No vast fortune was needed.
Isn't that strange.

20 years of doing that so far.

I'm a professional, working in autism.  
So are my colleagues.
We're autistic.

If you want to save money, never start by listening to some attractive salespeople selling you attractive folders for £50,000 (which is basically what they're doing).  If you want an attractive folder full of nonsense, go to a stationers and get one for £5.

If you want to save money, never start by listening to some representatives from the Big Pharma drugs and genetics companies telling you that for only £millions they can 'cure' autism.  They exist for their shareholders, and are quite open about saying that this is an 'unmet need' that they can exploit to make money for those shareholders.  And ultimately a few more £million for their senior team.  Specifically, your money.

If you are a parent, don't believe the hype about "hand us all your money or your child will be autistic forever".  Yes, they will. Whether you hand over money or not.  Instead, if you must hand over money, ensure that actual autistic specialists receive it.  Or our allies.  People who understand how to actually help your child, because we were once pretty much the same as your child. And we have spent decades in this trade, learning things that help.

Autistic people are not lab rats who exist so that shareholders can make money.

We're people.  Glorious, wonderful people.  

Get to meet us as friends instead.

Thank you for listening. 


Sunday, 8 July 2018

How to Consider Disability and Autism: A Primer for CofE Church Leaders



The Archbishop of Canterbury and daughters Katharine and Ellie took part in a BBC broadcast recently. The transcript is at this link and, at the bottom, it links to the audio version.   Hugely pleased in particular to hear Ellie's perspectives on dyspraxia, adding to the powerful voices of Katharine and the Archbishop. On July 13th 2018, there was a disability conference for representatives of the Church of England.

All of this is good news.  I'm blessed with senior figures in the country who are inclusive and enabling. But, how should we think about disability, and indeed about autism and other neurodiversities, in our churches?  Neurodiversities = brains that function in a different way from those of others, e.g. autistic, dyspraxic, dyslexic.
.
To begin to talk about disability, people need to understand a little about the different ways of thinking.  The "models" of disability.  I'll use my own terms for some of them and a brief idea of what they're about.  I've encountered each in some of our churches.  Note the word 'some', before anyone gets overexcited and thinks I'm generalising about the whole church.  I'm not.  Ready?  Here we go...

Medical Model:  "You are ill.  Our Doctors will fix you.  Therefore, not the problem of anyone but you and your Doc.  Or you might die. We'll pray, and take your funeral.  Job done".

All Your Fault Model: [As I call it].  "You are ill or disabled or neurodivergent?   It's your fault.  If you made better choices, or more effort, you wouldn't be ill/would be able to overcome the obstacles in the way of participating.  Go away."  Arguably, this model explains what we see with the benefits system at the moment, with some people who are desperately ill told to have a 'better attitude' and denied money until they starve, (in case that helps them to have a better attitude to overcoming those obstacles).  In reality, some just die, and the rest suffer.  It's not clever.

Cruel Faith Model:  "God made you ill.  Maybe you did something to offend him.  If you had more faith, he'd have cured you.  Nothing to do with us, guv.  We shall shun you until you improve your faith."

Sainthood Model: "God made you ill because he wanted you to show how saintly you are by suffering.  The suffering is a journey of enlightenment for you.  You will be a special Angel, lucky you.  We'd better let you get on with that Holy Suffering, eh?"


Charity Model "We will use your disability as a way to show others how wonderful we are as Christians, caring for you. You may smile in photographs. We might let you attempt something, then agree that it was noble of you to try ...then ignore it and get a non-disabled person to say whatever you just said."  Various people are given awards for helping us to get perfectly ordinary things, often without even asking us if that's what we wanted.  If we also help other people, we're definitely not given proper awards, as of course we're objects of charity, not stalwarts of the community...

Cheering Social Model:  We are one community, and as a community, we decide how we build and run things and what we spend money on to make them accessible. So we'll build and run something that enables as many as possible.   We accept that some people need good support, but we acknowledge that they also bring gifts, learning experiences, skills.  We decide who we include and who we exclude, so we'll talk with disabled people as our equals and partners, and see how we can include one another.  We decide who we empower and who we disempower, so we think wisely about a need for empowering different groups.  We know sometimes people may bully and ostracise, blame and ignore. So we as strong leaders make it clear that bullying and nastiness towards disabled people is not OK.  We model love and respect.  We choose to care for one another as equals.  Disabled & neurodivergent people have much to offer, and are loved children of God, and we believe that, together, we are the One Body of Christ, each and every part as vital.

It's not a full list.  It's certainly not an academic list either.  But it's a starting point for discussion.

If your loved one was involved in a car crash which left them with life-changing injuries, which of the above models would you like a church to follow, for them?


As a church, we have a brilliant example in Jesus.  
He spent much of his ministry with disabled people.
Nearly every time, we read of him asking them what they wanted, and working collaboratively with them.
When the man on the stretcher couldn't reach Jesus, they broke the building to get him to hear Jesus.  There was no-one saying, "We can't do that to our historic structure".  Jesus didn't say, "Leave him outside until he figures out a way to get in by himself." 

When Jesus's autistic friend Nicodemus had a question, Jesus took time to listen and help.  And, Nicodemus was still autistic at the very end, at the tomb, staggering up the hill with a socially-inappropriate amount of herbs and spices. Not 'cured'.  I've blogged on it.  
When Jesus was seen after the crucifixion, he still had the wounds from it.  He wasn't made perfect.  He was still displaying injury, in his risen form.

We've missed so much by some people in some churches marginalising disabled people.  By assuming that it's 'nothing to do with us, guv'.  By expecting that 'people-like-that' are a nuisance, a danger, a threat, a drain on resources, a bother, a way to get awards for other people.  We've missed out on friendship. On love.  On shared journeying.  On that of God that is disabled, injured, neurodiverse.  I'll make it clear that some churches and some people are fabulous.  We can see good things happening.


So, if you are part of a conversation about disabled or neurodivergent people - who is in that room with you?

Remember what Jesus said about the banquet and who was invited?  Disabled people.  


Honest. Luke 14:13 etc is a starting point.  Better still, an awful lot of disabled people really can repay you - in so many ways.  As leaders, prayer partners, wise counsel, problem solvers, many with skills and patience aplenty if allowed to share them.  I'd recommend the work of the L'Arche communities for how much that shared partnership with us can be a blessing for everyone involved, once we stop thinking about 'cost' and 'burden'. 

Take that opportunity to listen, to learn, to share.

Thank you for reading.  And a big thank you to the Archbishop of Canterbury, Katharine and Ellie, as well as to all those in various groups nationally - Inclusive Church, St Martin in the Fields, etc - who are part of these conversations and part of a renewal of love and respect for disabled and neurodivergent people,  in all our diversity.




   

Saturday, 7 July 2018

Roundabout Hypothesis - a Guest Blog by Chris Memmott

A white man in his mid twenties, with a beard, smiling, wearing a black sweater.


Hi.  I'm Chris, and I work as an autism consultant through AM Consulting, and with Autistic Pride Reading and specialist NHS teams.  After two years of Degree level studies in Psychology & Counselling, I spent almost two years working with autistic young people in schools. My work includes respite care, training, conference speaking, environmental accessibility, and writing.

As we know, there are a lot of theories about autism.  We also know that none of them really explain it, as yet. I have major sensory processing challenges.  My brain takes in too much information from the world around me.  When I'm training people, I explain it as 'Roundabout Hypothesis'.  Let me explain:

A roundabout without much traffic on it

The picture shows a roundabout.  There isn't a lot of traffic on it.  Incoming traffic has room to think, to plan, and to get round the roundabout without too much hassle.

Most human brains work the same way.  There's incoming information from sight, sound, smell, touch, taste, hunger, thirst, balance, etc etc.  The brain accepts it, processes what it needs, and sends it round the brain's 'roundabout' and heads it in the right direction.  It works well, and can keep working for hours.

But, what about if your brain takes in too much information at once?  The second photo shows a roundabout where there's too much traffic happening from all directions.  Gridlock.  Now, nothing can get through.  (Well, maybe cyclists.  They can always get through somehow.)  But the rest of us, stuck, overheating, beeping horns or collapsed in a heap of despair, going nowhere.  Some autistic brains take in so much information that they can't get any of it processed and sent on its way.

A roundabout with a lot of traffic, gridlocked

When it happens, our brains simply have to wait for the 'traffic' to clear.  Just adding more traffic to it won't work.  More 'traffic' might be chatting with us, or trying to put a hand on a shoulder without our consent.  Or shouting at us.  Or making us stay in a busy, noisy place where the queue of 'traffic' waiting for our brains to process it just gets longer, and longer.  It might be more 'traffic' from our brain trying to work out how to speak, or how to understand non-literal language.

We need the traffic to stop arriving.  Noise cancelling headphones help me.  Sunglasses help, too.  A quiet room without bright artificial lighting also helps.  Wearing comfortable clothes so that there's isn't a constant traffic jam from the, for example, 'Your socks are hurting you' lane. 

Find out what helps us reduce the 'traffic'.

It makes sense to me. I hope it helps you.

Chris can be contacted via 
http://www.autismlivetraining.com/ working with Richard Maguire and team and via http://www.autisticpridereading.co.uk/ which is the first autistic-led charity of its kind in the UK.