Wednesday, 15 August 2018

Autism, School, Exclusion. What's fair?

Classroom seen as a mass of confusing colours and shapes

The picture shows a school classroom as I see it, as an autistic person.  A kaleidoscope of shape and blinding lighting, with vague outlines which are probably other students.  Deafening noise.  The stench of different smells.  The confusion of many voices, including some heard through walls from neighbouring halls and classes.  School uniform that feels like barbed wire on my skin.

In the chaos, a different voice which I have to try to listen to.  It's so hard.  My brain doesn't want to tune the rest of the noise out.  Apparently I've been asked something, but I miss it.  The voice gets more strident, the class turns to look at me.  The intense stares overwhelm me.  The person next to me jostles me and it feels like an electric shock on my skin.  Only six more hours of hell to go.... only six....

Some of our autistic pupils simply cannot do this alone, without 'time out' to recover from the pain and exhaustion during the school day.  Not for hour after hour of puzzling painful chaos.  Some will respond by 'shutting down', e.g. going quiet and still, as if they are ignoring the teacher and the instructions.  It's a desperate emergency strategy by their overloaded brain, allowing it to stay at least partly functional.  Others will go eventually into meltdown, if not allowed escape or respite from the hell.  An involuntary state, in the same way that an epileptic seizure or  a diabetic incident is not a 'choice'.  It's not a display of anger to get their own way.  They may be so anxious, so utterly overwhelmed, that they will push others, flail their arms, sound angry, when in fact they are terrified,exhausted, overwhelmed.

How would you be responding, if that was your experience, day after school day, endlessly repeating?  We've turned classrooms into a hell for autism.  Fluorescent lighting. Endless noise.  Everywhere, bright patterns and overloading information. Groupwork and social time. Crowded hallways and relentless academic pressure.  Autistic children mostly could cope in the quieter schools of decades ago.  Not a hope now.  Generalising of course.  Some can cope, just about.

There's been a Court case in the UK.  A Judge has noticed that a lot of autistic pupils are excluded from school, for having meltdowns.  The Judge also noticed that some schools were doing almost nothing to help those young people to cope.  It was unfair, the ruling said.  We cannot simply exclude autistic pupils for entering meltdowns. Meltdowns are part of autism for a good number of autistic young people.

We have a system that forces every parent and carer to fight for every single thing for their autistic child.  Any help, any support, even the simplest thing like noise cancelling headphones.  Everything becomes an exhausting battle ground, in which everyone loses.  The pupil, the parents/carers, the teacher, the public who end up paying monstrous costs to fix the then-very-broken child.  None of it necessary at all.

I'm personally glad of the Ruling from the Court.  Whilst mindful that of course everyone needs to be safe, the way to achieve safety is to stop hurting the autistic children.  Punishing them for responding to pain is not something any of us need to do.

What your school needs to do is to understand autism.  In understanding it, we can help to stop putting the children in pain and exhaustion.  It's actually quite easy.  And quite cheap.


Make sure you are getting really good autism training, from autistic experts and our allies.
Make sure you are getting really good consultancy advice about children, way before any crisis, from autistic consultants and allies.  Notice I said 'autistic experts' and 'autistic consultants'.  People who can detect what's happening in that environment, using similar sensory systems to the pupil.  People who can explain autistic language and culture.  Yes, there is a different autistic language, a different autistic culture.  In the same way as it's important to respect the culture of children from different ethnicities, it's important to respect autistic culture and communication style also.

Avoid using 'behaviour control' programs that force the child to behave as if they are not autistic.  That's not a solution.  We know from new research that it can lead to disastrous harm and suicide. The work just published by the University of Coventry refers.

Most of us, let's all work together.  Because autistic children are generally honest, generally great fun, generally fabulous young people with much to offer.  But, left in constant pain and fear, you'll never see that side of them.  And, excluded, their future may be as bleak as their time in school may have been.  They need you on their side.  Let's hope that Court Judgement means that schools will be given the training and the resources they need at long last.

Thank you for listening. 

Friday, 3 August 2018

Stairs and Autism

A picture showing a flight of wooden stairs. It is difficult to tell where the edges are.

"Why are stairs a problem for some autistic people?"  We get that question a lot from trainee Occupational Therapists and Social Care assessors, amongst others.    A logical question to ask, because autism doesn't appear to be a mobility difficulty.

It's about sensory processing.

The picture at the top shows a flight of wooden stairs.  Did you know that was what it was?  My brain doesn't see wooden stairs.  It sees some vague stripes.  How would I know that was stairs?  How do I know where to put my feet?  I'm having to guess.  Not good.

Stairs are also an exercise in balance, and the sense of balance is another difficulty for many autistic people.  We may not know exactly where our body is, in relation to the things around us, also.  Thus, navigating a flight of near-invisible stairs, up and down, becomes epic.  I can manage to nearly fall down stairs on a weekly basis.  Only a lifetime of knowing to pace myself, grab the rail, brace against the opposite wall, or otherwise find a 'third point of contact' works.  In the holiday accommodation we're in at the moment, the stairs are steep, with narrow treads and uneven heights, some going into a semi-spiral at the top.  I've nearly fallen three times so far.

On a bad day, stairs are unclimbable for me.  Yet people will look and think, "There's nothing physically wrong with you, so you must be exaggerating".  If only we were.


So, when assessing autistic needs, be aware of the Stair Perils.  Ask about how often the person loses their balance on stairs, or worries about climbing or descending stairs.  Ask what helps them at the moment.  Consider whether accommodation can be provided that helps with this.  Maybe hand rails both sides.  Maybe no stairs at all.

Thank you for listening.

Wednesday, 1 August 2018

Autism, Christianity, LGBTQ. Why it's important. Safeguarding. Caring.

A picture of a heart-shaped hole in a rock, through which a rainbow can be seen, and small bird flying across

There are different beliefs about God and what he thinks of gay couples.  Some Christians prayerfully believe that God does not want gay or lesbian couples to marry, for example.  Other Christians prayerfully believe that God is fine with such couples marrying.  Both find good support for their views in the Bible.  Both believe they are doing their best for God.  A few people turn it into hate, and hate isn't OK.

In the Church of England, it's still a difficult subject for some, though recent research shows that the number who are against equal marriage has dropped a lot in recent years. (British Religion in Numbers website).



The chart above shows that in 1989, about 8 out of every 10 CofE people thought equal marriage was wrong.  By 2014, only 3 out of every 10 thought so.

There are huge differences in the answers given by people of different ages. The chart below is from research done by Jayne Ozanne in 2016.


It shows that below age 34, most CofE people are fine with equal marriage.  But over age 55, a majority are not.  That opposition from the over 55s is dropping, too.  But, of course, in many churches, most people are over age 55.  And most powerful people in churches are over age 55.  So we have a church where it's been difficult and sometimes dangerous to be openly gay in some places, for example. 

It's useful to see research, I find.  Some would, of course, say that being popular doesn't make something right.  And so we have what will probably be an eternal debate about all of this.

What we do know is that when people get to know a gay or lesbian married couple, living ordinary lives, doing ordinary things like everyone else, as neighbours, work colleagues and friends, they usually can't remember what they were objecting to.

There was a lot of fervour around, "Those Angry Gay People Demanding Their Rights", to use a phrase.  I think it's OK for people to be angry that they are denied marriage before God to the equal adult they love with all their heart, because of who they are.  There's a good blog about 'tone policing' that I'd recommend to people who want to criticise anger about injustice, from minorities.   Tone Policing  [Warning for some strong language and themes] 

No anger here, though.  I'm not an angry person.  My concern is love. And safety.

Where is our love?  Where is our safety?

I am one of many people communicating for the autistic population.  About 3 in every 100 people are autistic.  About 2 million in the UK, on the best and most recent workings-out.

And at least 3 out of every 10 autistic people are lesbian, gay, bisexual, transgender, non-binary, queer, asexual, intersex, etc.  In other words, part of the LGBTQ population.  The figure for autistic females is higher, at around half.

Yes, half the autistic women in the country are part of the LGBTQ population.  

Autistic people are as likely to be Christians as anyone else.

Now, we have a genuine bit of thinking to do here, as a church.  Because we know that autistic people are often a vulnerable population, with a suicide rate nine times higher than others.  Dying on average at age 54 after a lifetime of difficulties caused by society.  So many are homeless, having been denied jobs as well.  We know that they are routinely targeted for bullying, ostracism, fraud and every other form of crime. We know that the rates of targeting for sexual assault are sky high, to use a phrase.  3 out of every 10 autistic women are victims of rape, for example.

These aren't 'angry activists' and 'dangerous people', storming the gates of your church.  These are largely anxious, frightened and depressed people, trying desperately to survive from one day to the next.  Many understandably fearful of the people around them, for really good reasons.   Communicating using a different body language and spoken language method to you, so often leading to misunderstandings between the two cultures (autistic and non-autistic).

If half of autistic women are part of the LGBTQ communities, struggling to survive, what is our response?  Is our response to lock the church door in their faces, or bring them in for a good bit of condemnation? Or leave them for the nearest predator in the church to prey on? 

 And is that what God asked us to do? 

Or is that bread and wine for all who want to follow Jesus?  In love?  Is that safe fold, watched by the Good Shepherd, only for some of the flock, or for all who yearn to follow Him?

I leave you with the questions. 

Thank you for reading, from this autistic member of the LGBTQ community, who follows Jesus, and always will.  If wanting a safe church for autistic people leads people to see me as a warrior, that's OK.   But it's not war I bring.  It's fellowship.  And maybe that's the thing some fear the most....

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: A Primer for CofE Church Leaders

Archbishop Justin Welby with daughters Katharine and Ellie, smiling at the camera


The Archbishop of Canterbury and daughters Katharine and Ellie took part in a BBC broadcast this week. The transcript is at this link and, at the bottom, it links to the audio version. (The picture above is from that BBC link and shows the three of them, smiling at the camera). Really positive.  Hugely pleased in particular to hear Ellie's perspectives on dyspraxia, adding to the powerful voices of Katharine and the Archbishop. On July 13th, there will be a disability conference for representatives of the Church of England.

All of this is good news.  I'm blessed with senior figures elsewhere in the country who are inclusive and enabling. But, how should we think about disability?

About the author of the blog:
I was an adviser to the Archbishops Council on national policy [domestic abuse] and am autistic & disabled (arthritis, spine condition, a journey with bracing cancer treatment and its aftermath). 
 I wrote the national guidelines on autism for the Church of England, which form part of the Opening the Doors report as affirmed by Synod.  I work nationally, having advised the Government All Party Parliamentary Group for some years, latterly as Vice Chair, and in my role as trainer, consultant, adviser and conference speaker.  Currently, I am embarking on a path towards an MA within a University, and enjoying revisiting the delights of academic research & essays.  I am also providing expertise for a book on the theology around autism, working with a Theologian.  I work with excellent teams, for example that of the disability group in St Martin in the Fields, the church which is led by Revd Dr Sam Wells, and with Inclusive Church and the educational work they are doing around disability & inclusion. This blog, as with all my blogs, is written in a personal capacity and not in any formal role.

I'm also well known for 'saying it like it is', which tends to cause nervousness and running away in some church people. So you won't often find me in the Big Meetings on disability.  (In autistic culture, 'saying it like it is' is culturally polite, expected and responsible.  So I think we may have a learning curve ahead of us on how different cultures and groups can communicate differently, without it being deemed rude.) 

I'm a Christian.  Have been all my life.  Including the years when, as an autistic child, I was non-verbal, rocking in a corner, lining things up.  My faith has been a constant, a joy, a blessing, and a rock indeed during difficult times.  I have the honour of knowing many fine Clergy, & Christian friends and colleagues, and of course many equally fine people from other faiths or of no faith.  I count some Clergy as being amongst my closest and best friends, who have walked alongside me for many years.  Mine is not a commentary of hate and undermining, but one of sure and certain belief that the Jesus we love and follow was a friend to disabled and neurodiverse people. [Neurodiverse - autism, dyspraxia, dyslexia etc] Honouring us, enabling us, listening to us.  Wanting us in that room too.

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.

Cruelty Model: [As I call it].  You are ill or disabled or neurodiverse?   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.

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.


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 but are not listened to or respected as someone with your own views and experiences.  We know what you need, because my cousin's window cleaner's next door neighbour knew someone like you, so there's no need to ask you.  Your role as a disabled or neurodivergent person is to say we are wonderful, and we will say that you are wonderful.  It's all Good News!  Meantime, we will consult with academics about you, even if they have never experienced disability or neurodiversities, as obviously they are the only experts.  (Well, we might choose an academic who once experienced disabling events but is OK now thanks to medical advances.  As long as they can look, sound and think in totally non-disabled ways in the meetings).  You being disabled means your role is just to smile.  Hope that's clear.  Although, we might let you attempt something, whilst we agree that it was noble of you to try (even though obviously it won't be any good, as you're disabled....).  The "Look at this scribble on a piece of paper - isn't it wonderful!  And Jonny managed to stack a whole shelf by himself!  Clap, everyone!" examples, in which academic experts who are disabled are kept well out of the photographs.  That doesn't fit with Charity Model at all, having expertise from disabled people.  If someone does something especially noble, like sitting with us in the pews, they are congratulated for their efforts and celebrated in the format of "Mrs Bloggins has done noble work caring for disabled people in our church [cue photo of sample smiling unnamed disabled person, preferably holding a scribble]. Here is her award."  A celebrity is brought in to hand it over, and the disabled person is wheeled back to their chosen-for-them-without-consulting-them place.

Cheering Social Model:  We are one community, and as a community, we decide how we build things and what we spend money on to make them accessible. So we'll build something that enables as many as possible.   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 decide who we bully and ostracise, blame and ignore...and who we protect and care for. 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.  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?


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 actually 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." [Let's hope the Heritage organisations start helping us more, eh?]
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.  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 people - who is in that room with you?
Wheelchair users?  People who have some visual impairment or are Blind?  People who have some hearing impairment or are Deaf?  People with learning disabilities?  Autistic people?  People who are dyspraxic? People who are experiencing depression and other mental health conditions?  Where are they?  Take a look round.  Can't see any?  Go get some of every kind.  "Nothing about us without us".  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.

And, pray.  Please pray.

I will be.  For all friends and colleagues in that room.  And for the endless millions in our parishes who would love to share at the table with everyone else.

Thank you for reading.  And a big thank you to the Archbishop of Canterbury, Katharine and Ellie, as well as to all those who are part of these conversations and part of a renewal of love for disabled and neurodiverse 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 Autism Oxford.  After a Degree 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.