Sunday 31 January 2016

Autism Charities: Pick a good one

There are so many autism charities.  Often, people want to support one.  But which?
All will tell you that they are doing wonderful work to support autistic people.
All will have pretty pictures on the wall to show people.
All will say fine things, often in front of the media.

But...which make a difference, and which may make it worse for us?

Autism is one of the least understood human differences in the world.  For the last few decades, we were misunderstood by specialists.  The USA diagnostic criteria has only just been updated.  It has only just realised what autism is.  And what it isn't.
It never was a 'behavioural condition' involving violence and self-harm.  It never was just boys.  It never was a lack of speech.  It never was a low IQ.  None of those things ever were 'autism'. 

I'll let you think about that, first.  Because it's important that you know what autism is, and isn't.  That will guide which charity you support.

Autism is where brains take in too much information from our senses, too fast for us to process it all. Generalising, we are extreme specialists.  Our ability to focus and our passionate interests make us experts in many things.  We are to detect the tiniest changes in the environment.  Able to hear the tiniest background sounds.  Ten time more accurate than others.  Very literal and precise, very keen on social justice.  Quite often unable to recognise people from their faces, and unable to spot body language/face expression fast in crowds.  A whole range of IQs and personalities.  A whole range of famous and ordinary people in society around us.  1 in 30 of the population.  

All that extra sensory processing?  It leaves us almost literally blind and deaf in busy, noisy places.  It means our brain wiring overheats in noisy social conversations, which is why we withdraw to somewhere to let it cool again.  This isn't a mental illness or an incompetence, a disease or a disaster. it's a different way of being human.  Every bit as human as everyone else.

Those who also have a learning disability, a behavioural condition, mental health conditions or otherwise will of course have a tougher time in life than those who are solely autistic.  Some will need supported living, for life.  Most of us do not. 

If you have a friend who is a wheelchair user.  You'd agree that they are going to find some things harder, yes?  Like going up stairs.  Would you insist that they are only 'mildly affected', if they had a normal IQ and could speak?  Would that make sense?  Nope.  Same with autism.  Or being Blind.  Or having a speech and language condition.  We don't insist on it only counting if there are multiple differences/disabilities/conditions at once.  We shouldn't with autism. 

Here's your checklist for spotting good autism charities.

The voices of autistic people are enabled and everywhere.  Not statements about how we 'put the needs of autistic people first', said by non-autistic people, defined by non-autistic people.     I mean actual autistic voices.  And by voices I mean communication.  Almost every autistic person can communicate.  Especially with modern technology available. You get to meet and talk to autistic people, in a relaxed way.  You are not told that it would 'upset them'.  I'm going to explain this a bit; yes, it can be very eek for us if people arrive unexpectedly in our personal space.  But a chance to explain our lives to others - done in a way we can access, that's great.  I want to see charities supporting ways to enable us to do just that.

Watch out for ones where most of the 'good outcomes' involve other people not being inconvenienced.  Or where autistic people are rewarded over and over again for Not Being Autistic.  Would you like to be rewarded for Not Being Female, or Not Being Male?  Surprisingly similar.

Autistic people lead or co-lead.  With real power.  Power over what happens, and how. Yes, some need support in that role.  But where are the autistic leaders?  Trustees?  Management?  Specialists?  Where are they?  Did you meet them?

The training is done for the organisation by autistic trainers, perhaps with others - but the input and training is autism-enabling.  Where autistic people have contributed, that is made clear and their work is paid for and respected.  There is none of this, "We will let you work for free or for a pittance, and you should feel grateful for the opportunity" stuff.  That's not helpful. That's abusive to use us as slave labour.  Sorry, but it is.

We are not portrayed as tragedies.  Or inspirations.  Nor mostly as people we 'help' to stay safe from hurting other people.  In all the research we have, autistic people are less likely to harm others than anyone else.  Most of us are victims of violence and abuse, though.  A few autistic people will go into a meltdown if placed in intense pain.  So would you.  Stopping the intense pain works, for you, and for us.

The charity is enabling people to access the things they want to access.  No, just not a trip to the zoo. As nice as it is for anyone to do that, autistic or not.  I mean jobs, money, skills, relationships, holidays with people we want to holiday with. Hobbies that aren't just 'Here's a painting set - we'll put the art on the wall afterwards for the nice donors to see'.   I don't want to see charities listing, "Jonny unpacks the communal dishwasher, as a volunteer" as an applause-worthy aim for that person's life.    Would you want that as your ambition?  Well, we're people too.  Just like you, but with an autism brain design.

What 'therapies' are used?  Check this carefully.  Watch for ones that use 'positive behaviour support' and 'applied behaviour analysis' (PBS and ABA)  Some use adapted and reasonable forms of these.  I work with some very nice ABA practitioners who are marvellously supportive and enabling, because they adapted the principles.  Others will not even speak to me, because they don't actually speak to the 'clients' unless in a therapeutic setting.  Apparently. That's odd, because I have just under 1000 clients of my own, as MD of a firm of Chartered Surveyors.  And I talk to everyone as equals.  43% of ABA practitioners in a study believed that physical punishment, including electric shocks, can be a good way to treat us.  Really?  Most believe that taking our favourite things away, and using them as a form of blackmail to get us to be non-autistic, is the way to go.   That is the core of pure ABA 'therapy'.  Teaching us that autism is bad.  And analysing how to control everything we do.  Whilst making it sound like we benefit from that.   Hmm.

Watch carefully for charities that say the 'problem behaviour' includes repetitive movement.  And, if queried, pretend that all repetitive behaviour involves self-harm....therefore it's a good thing.  And say the 'residents' are pleased that they are prevented from doing it any more.   All human beings use repetitive behaviour as a coping method.  Autistic people do too.  We're no more likely to use self-harm than you are, if placed in equivalent situations.  Taking away a way of coping is not OK.  There's science behind why autistic people use repetitive behaviours (called 'stimming'), for example flapping or rocking.  Ask us why we do it.  Don't just assume it's a sign that we are broken and need fixing or pitying. It's our equivalent of British Sign Language, or our equivalent of a Blind person using a walking cane.  Taking most of that away only helps people feel less uncomfortable round us.  That's not an outcome for us.  That's an outcome for the powerful.

And watch out for big PR.  If a charity has £thousands to spend on hiring a big venue with celebrities, dignitaries, etc...ask yourself how accessible that is for autistic people.  We can't access huge events under fluorescent lighting, without it hurting like heck.   Where are the autistic organisers/co-organisers?  Where are the autistic speakers?  People with something significant to say, not just, "My name is Sam and I am happy to work for free, stacking shelves".  No, Sam is being exploited.  And is na├»ve enough to believe this is a good thing. 

Stand up for Sam.  Get Sam's voice heard.  She'd like the same things you would.

That should start you off with your checklist.  Roll up your sleeves and get asking some really tough questions.   And check those answers out.  Spotted one with not a single autistic voice being heard?  Move away.

Friday 29 January 2016

Autism and Healthcare

A lot of my life has involved healthcare appointments.
Like most autistic people, I live in fear of them.

The healthcare people are usually lovely.  It's not that.  It's the sensory hell and the intense pain.  It's also the lack of understanding of autism.   And it's the communication differences, too.
I've had to advocate for other autistic people in healthcare situations.  My family members, for example.  All the time, I'm trying to handle the amount of sensory pain I'm in, and make sure they are OK too.
What's it like, being in a medical room?  It's like this.

Above, a flickering fluorescent light, like a strobe light.  Around me, deafening bleeping and flashing lights on equipment.  Trollies rattling past.  Footsteps that I can hear from hundreds of yards away. Conversations echoing down the hallway.  Intense pain from light physical contact (thanks to our sensory system differences).

As a cancer patient, I'm probably one communication away from disaster, always.  In the past, teams who rush past, no time to learn about me, no time to deal with things or explain them.  No time to listen to why I cannot access this or that treatment.   By the time I've thought of the's too late.  By the time I've established a relationship with one healthcare person, they were replaced with another...and another...and another.  Kept waiting for two hours under strobe-lighting and in a 'bath' of chemical smells, I'm lucky if I can speak at all by the time I'm in the room.

Autistic people are two and a half times more likely to die early.  I think I can see why.

I'm very fortunate with my main team members.  Very glad to be working with more and more  healthcare professionals who want to change this.  All good people. People who are short of money and time and resources.  But who fervently hope for a future where autistic people don't die young. 

As I enter the next phase of trying to survive breast cancer and its treatments, I keep in prayers all those whose lives are already hard enough. 

Monday 25 January 2016

Positive Behaviour Support - What needs improving?

I worked with and for an Applied Behaviour Analysis charity for a few years.  So it's a subject I know well.  And a method I never use.

As a national trainer and consultant on autism, I advise on behaviour and adaptation.
As an autistic person, I know what it's like to be autistic.  I spend pretty much 24 hrs a day, 7 days a week, 52 weeks a year with autistic people.  Not just 'Asperger syndrome'. (No longer called this in most diagnoses).   Not 'mild'.  Proper autism, in all its forms.

Applied Behaviour Analysis has a form called Positive Behaviour Support.  A catchy new title.  Sounds, well, positive.  Positive is good, after all.  It's got a few add-ons.

Positive Behaviour Support has some good stuff.  And of course any programme is only as good, and kind, as the people delivering it.  Many good, kind people out there.

But, when I look at the autism charities that use Positive Behaviour Support, I see a theme. 
"We see the person, not the condition".  "These are not autistic people, they are people with autism.  People first."  The autism is something separate from being a person.

Autism is seen as something that stops people being human.    Or so we are told.

And autistic communication is seen as a sub-human form of communicating.  Or is it?

Goodness me.   OK, let's try these versions:

We see the person, not the maleness.
We see the person, not the femaleness.
A person with gayness, not a gay person.
A woman with left handedness, not a left handed woman.

A man with Blackness.

Oh my.

Are we starting to understand why many autistic people prefer to be called autistic, and not a 'person with autism'.  We're not ashamed of how we were born.  Having said that, if an individual wants to be called 'person with autism', then that's their right.  That's fine.  It's when it is imposed on us by non-autistic people....that's the problem.

"Stereotypy".  That's the word that Positive Behaviour Support professionals use.  In autistic circles, it's called Stimming.  Repetitive behaviour, such as tapping something, or rocking, or hand-flapping, or foot-moving.  We all do it, us humans.  But if you're autistic, you're not allowed.

Imagine you have a Deaf friend who is a sign language user.  You will notice that they use their whole body to communicate, leaning in and out.  You will notice that they use their hands and arms in repetitive ways that are very different to other people.  And if they are put in situations where they cannot understand what is happening, they become anxious and quite possibly angry.
Now, what is our response to those who are Deaf?  Do we teach them better ways to communicate than that?  Do we teach them to put their hands down and ask using Proper Words instead?  If they get angry, do we treat it as a behavioural problem to be taught out of them?  Well, for some years, of course, people did just that.  And the Deaf community are rightly horrified at how they were treated.

Autistic individuals communicate just fine....with other autistic individuals.  Our communication method is different. Non-autistic people mistake it for 'meaningless repetition', or 'lack of empathy' because they cannot read it.  Which is quite funny really, because non-autistic people often say we are the one who cannot read them.  It works both ways.   Because of our brain wiring set-up, we communicate through touch, through feeling objects, through repeated movement that allows us to re-focus.  "Stimming" is autistic  communication.  It is also how we reconnect with our bodies. It's how we re-centre.  It's also a way in which we learn.  You'd have to have our brain wiring to know why it works. But it does.

Autism is not a 'behavioural condition'.   Our brains take in a vast amount of sensory information.  That's autism.   It's why we struggle to decode social situations fast enough.  Simply too much incoming info.   It's why we need routine - to make sure we balance sensory input.  If we don't, we get an electric overheating in the internal brain wiring. That hurts.  Would you try to avoid an electric overheating to painful levels?  You would, wouldn't you.  Well, so do we.  That's not 'problem behaviour', that's 'survival'.

Autism has advantages.  We are generally ten times more accurate than others.  The first to detect the smell of smoke, the approach of a speeding car, a gas escape.  The first to notice food that has gone off, or a failing computer part as it starts to make a noise. The first to detect a predator in the room (of the human kind).  Honest, loyal individuals....but who live in a world so loud, so busy that our brains cannot process all the incoming information.   Other humans created that hell for us.  And there are ways to deal with sensory overload that do not just focus on making us behave nicely whilst in pain.

Positive Behaviour Support teaches that "stereotypy" is a problem behaviour.  We have to be redirected to more appropriate ways to behave, we are told.  If we do that, we help autistic people to be better people, more normal.  Extensive plans are put in place to get all staff to stop us being ourselves, and using our own form of communication.  Instead, we are taught that we absolutely must only communicate in Approved Ways.  Non-autistic people decide that for us.  We're allowed to choose hobbies, activities and room colours.  That's nice, of course.  We are told this is 'person centred planning'.  Except if we want to choose to be autistic and communicate autistically.  That isn't OK.  We're not allowed that.   

So, you'd go up to a sign language using friend and teach them to be more 'normal'?  I'd bet a fiver that you wouldn't. Well, I'm not a betting person, but you know what I mean.

Can I ask that you don't do that to us?

At this point, I get someone putting their hand up and saying, "Well my family member injures themselves - are you saying I should let them?".   Funnily enough, I've said no such thing.  See above.  Of course if injuries are happening, there needs to be sensible, respectful intervention.  No-one has ever said otherwise.   But that is normally how autistic advocates like me are silenced.  By saying that we don't understand what the professionals mean.  By saying that we don't understand the dangers, or how to help autistic people.   Well, the thing is, we do.  It's what I and so many others of us do - solve situations around autism. Very successfully.  Because we understand what's actually happening, and why. We sort out sensory overload.  We sort out communication misunderstandings.  We respect how autistic people need to balance their days, through personal insight. 

I always ask people to 'spot the autistic manager'.  Who in a charity or organisation is autistic and has real power in there?  Real decision making ability.  Real influence over money and budgets?  Who delivers the training?  Is it done respectfully alongside autistic trainers, or is it professionals talking about us, without us?  I don't mean a token speaker asked to talk about how wonderful the charity was.  I mean people with actual power.

If there are none, why?  Why are they not working alongside us, as fellow professionals?

Ask. And think.  Think about what message you are being given about the competence of autistic individuals.  And question it.

Meantime, learn about autism.  I'd strongly recommend Autism Oxford and the fabulous team I work with for that.  Get in touch. Or any other good training service that uses autistic trainers.

And if you are a Positive Behaviour Support professional or charity chief and reading this, who in your organisation is autistic and has influence and respect?  Do you meet with autistic adults in outside society as equals, and use our communication methods rather than insisting we use yours? Do you meet us in environments that are respectful of our sensory needs?  Lots to learn.  Together, we can indeed build a better world for autistic people.   By respecting one another and our God-given differences.

Treated like individuals, not as a person with autism?

" atmosphere where someone can be treated as an individual, not as a person with autism"

A quote from a President of an ABA autism charity.

I need you to listen.  Because this is important.

There are a million autistic people in the UK.  It is not a disease.  We are not ashamed of it.  It is a genuinely different brain design.   Some will have additional disabilities that make life more difficult.  For example a learning disability, or ADHD.  Autism is not a 'behavioural condition'.  It is a sensory and social processing difference.  Hugely accurate, loyal, honest, dedicated people who bring a lot to society.   But most of us have massive sensory processing difficulties.  This video, two minutes long, will explain them to you.  Turn the sound up.  Right up.  Watch it, and tell me how difficult it was for just two minutes.  Try that all day long.  You now have some understanding of why we behave differently in busy, noisy places.  Because of genuine sensory pain, not defiance.

"Positive behaviour support" is a form of Applied Behaviour Analysis, which teaches that the child's behaviour in that video is "problem behaviour".  It teaches that the child has to be rewarded to stay in the pain and behave nicely.  Do they? 

I want to be treated as an autistic person.  I am not ashamed of who I am, or how I was born.   And I am an individual.

Not only am I an individual, but I know literally hundreds of other autistic people.  All individuals, all happy to be respected as autistic.   Some, my family.  Others, my friends.  Yet others, colleagues, including clergy.  As you will be aware, I was for some years the autism expert for the Church of England.  The author of the guidelines for autism for the church, which can be accessed from  working with so many of the Bishops in the country.

Please,  I ask you not to use language that shames or 'others' autistic people.  In a world that is already filled with myths about how dangerous we are (no more than anyone else) and now incompetent we are (no more than anyone else), we need the love of the church.  We had horrible materials written by one of the preferred publishers for clergy, in which we were told that 70% of autistic people are abusive to their partner at some stage in their marriage.  From a study that showed that 77% of non-autistic people were abusive to their partner.   It reported only the figure for autism.  We get that all the time.  Demonisation.  The sense that we are evil, horrible, nasty individuals who are out to hurt everyone. Unless we have expensive behavioural training.  Well, no.

I've never met a nicer, kinder bunch of people than my autistic colleagues.  They have been there for me through my cancer treatment, they have supported me through my husband's brain aneurysm and my son's eyesight difficulties. They have cheered me and others along, prayed with me, cared so much about me and about others.  It breaks my heart to see autism portrayed in negative ways.  No, they are not at the 'mild end'.

I would ask that you pray for a world where we are seen as fully human, fully alive, and fully equal. 

We are autistic.  We are individuals.  And we are not ashamed.

Saturday 9 January 2016

Sensory Difference is Autism?

Good to see science catching up with what autistic people have been saying for years.

"...Because sensory information forms the building blocks for higher-order social and cognitive functions, we argue that sensory processing is not only an additional piece of the puzzle, but rather a critical cornerstone for characterizing and understanding autism".

In other words, they think autism is about sensory differences.  Sensory differences stop us socialising.  Simple, really.

I had an interesting email from a colleague at a large autism charity this week. My colleague told me that I was one of the most severely-affected people, on sensory difficulties.  I'm not.  If I think about the very large number of autistic people who share my life - as family, friends and colleagues - I'm about average.  I can think of many who are far more severely affected than I am.  I'm very good at explaining sensory stuff, though.  Perhaps it's me explaining it that has been misidentified as 'Oh it's just Ann being oversensitive'?  Who knows.

And this has been the difficulty all along.  This thing where if one of us explains sensory difficulties, we're assumed to be really badly affected, not like all the others who can cope just fine.  Allegedly.   Well, no, they can't cope with the poor sensory stuff either.  Each person will have a different set of worst-nightmares on sensory stuff, of course.

The thing is, it took me until I was in my 40s to work out what was wrong.  My ability to work out what my body was telling me was very poor.  I would be unable to communicate well in some rooms and spaces.  I would feel hugely ill in supermarkets.  I was struggling to cope in any internal space lit by fluorescent lighting. And not once did I link how I was feeling/responding to what environment I was in.  That is the difficulty we have with taking fairly young autistic folk as the basis for nearly every study... and using that data to say for certain, "No, this sensory stuff is a side-show; it's not really relevant.  We should focus on the Real Stuff, you know - the stuff that is Actually Autism.  The bad behaviour and the refusal to communicate with others.  That's Real Autism.  Sensory stuff?  Ach, that's just people like Ann being at the 'severe end'. "  To paraphrase quite a few conversations I've overheard during the last few years.

Look, dear lovely autistic professionals.  I love you all dearly.  No, truly I do.  But some of you are not listening properly to this.  I put it to you - based on the evidence - that the reason autism has become so much more visible in society is because society has become a sensory hell.   The reason autistic young people can't cope in classrooms any more is because they have become a sensory hell.  The reason we have only 15% of autistic adults in full time employment is because workplaces have become a sensory hell.

And we need to understand this.  We need to stop asking only very young people who haven't worked out  their sensory experiences yet.  We need to start asking a whole range of ages.  In proper structured questionnaires and tests.  No, not under fluorescent lighting, thanks.

We also need to put good money into things like the British Standards Institute new work on buildings and autism.  If we can't get the built environment sorted for us, we're not going to be productive.  Blaming it on our 'poor attitude' is not appropriate.  If you were in sensory distress all day, your attitude would be pretty poor, I can tell you that.  Try it and see.  Easy to replicate it. 

So, we need to rethink autism.  We need to start with, "Well, if people can barely see and hear in most places, and are exhausted from the pain of it, how do they communicate effectively?".   Then we can start solving nearly all of this.