Saturday 30 April 2016

Unhelpful Media Reporting around Autism and Violence

In today's papers, further coverage of a teenager, James F,  who killed two people in planned attacks.  He has been sentenced to 27 years in prison.

We learn a lot about this young person, from the news reports. We learn that he is ..

Has short brown hair
Wears glasses
Lives in Colchester
Went to school
Was sitting his GCSE exams
Had a psychopathic personality
Got an autism diagnosis as well, after his arrest when being held in a secure unit.

The Judge in the case was quite clear with the Jury that autism does not cause violence.

Dr Sarah Clayton, a specialist Clinical Psychologist, explains:

"In summary, there is as little chance of someone on the autism spectrum carrying out a violent crime as someone who does not have autism. In fact, research often shows a reduced risk of crime in people on the autism spectrum, due to their strong sense of what is right and wrong.”

Important words.  And accurate.

There are well over a million autistic people in the UK.  One can make a good case for saying it is 1 in 30 of the population, which would put the figure upwards of two million.  We are peaceful, gentle, caring people, on average.  Autism is not a mental health condition.  It does not cause deliberate violence.  It does not make people into psychopaths.  If anything, it does the opposite of that.  There were myths about 'lack of empathy'.  Those have been proven wrong.

Very very occasionally, out of these more-than-a-million, an autistic person will also be a psychopath.  And it's the psychopath that may become a killer.

There are a lot of people with brown hair.  We should not be afraid of people with brown hair.
There are a lot of people who live in Colchester.  We should not be afraid of people who live in Colchester.
There are a lot of people who are autistic.  We have no reason to be afraid of autism.  It's a sensory processing difference, where people focus on hobbies and special interests, and like routine and rules.  Often geeky and quirky, keen on social justice and fairness.

Psychopaths, though?  Yes, I can safely say that there's good reason to be cautious around them.  Some - a few - do things like this.

Please be careful what we blame for this type of violence. 

Make sure we report the correct cause of events in media.

Autistic people are usually the victims of crime.  We tend to die much earlier than others because our quality of life is already so poor, on average.  We don't need to be more marginalised and feared-for-no-good-reason than we already are.

Huge thanks.  And much prayer for the families, friends and communities of the individuals who were killed by this teenager, and those who were part of the life of James.  My heart breaks for them.

Friday 29 April 2016

Decoding "The A Word"

The BBC series, The A Word, about an autistic young man called Joe, has led to a lot of questions from friends of ours.

"Why did he do that, Ann?"

Joe is, of course, a fictional character, so there is no one answer that is certain to be true.  But, in Joe, I recognised so much of my own childhood, and learning styles.

Let's have a look at some of things we saw in the series:

Joe and his music.  We learn that Joe is nearly always listening to music, often through headphones.  He sings along to the songs, word-perfect.
Two main possibilities here.  Firstly, headphones cut out most of the background noise.  Many autistic people have brains that take in every bit of background noise, and cannot filter it out.  The recent National Autistic Society short film shows a bit of our sensory world  You'll need the sound turned up.

Secondly, going back to my own childhood, I learned words through music and musicals.  One of my first words was 'supercalafragalisticexpealidocious'.  I had listened over and over to the musical, and I could detect words that were sung.  Somehow the 'music channel' in my brain was working, but the usual speech-channel was not.   It was a huge and painful struggle to say spoken words.  I could sing some, though.   We can see some good research happening around this.  It won't apply to all autistic children.  We all have our own way of accessing the world.

Joe focusing through a ring-pull off a can, to look at a landscape.  Many of us have brains that take in huge amounts of visual information at once.  Having some way to focus on just a part of it...perhaps through looking at just one part at a time - well, that can really help.

Joe and the shutdown on the floor at the party.  Lots of people who were astonished that we didn't see a 'proper meltdown like real autistic people have'.  70% of autistic people report that it's usual to 'shut down', not have a 'meltdown'.  Both are brain events, not a temper tantrum.  Brain wiring that overheats from too much social input at parties, for example...well, it can either get an electrical storm which causes wild erratic behaviour (meltdown), or it can switch itself off to allow brain cooling (shutdown).   He was starting to go into emergency brain-cooling.  Onto the mat, where he could feel where his body was.  Knowing where we are in a space, in a room filled with fast moving noisy people...well, it's very hard.  Having physical pressure on our bodies can help us at least know where we are.  He knew where he was; on the floor.  Phew.   But unable to speak or interact with the others.   It's a horrible, scary feeling when it starts to happen.  Parties are not a good sensory environment from brains that take in too much information. They are often the ambition of parents, not the child.

Most autistic children do not 'look autistic'.   It is not about meltdowns, for a good number.  And those are, arguably, the children most at risk of being missed from diagnosis and support.  The quiet ones who appear to be 'coping'.  We're not.  We're often terrified, but can't show it.
Joe and the running away.  He'd been taken to a party filled with cooking smells, noise, social interaction.   Then his grandfather took him to a strange house and left him with people he didn't know.  Yikes.  His brain must have been on absolute painful superheat of anxiety and overload.  No wonder he did a sensible thing and took himself off to somewhere safe, away from this weird family doing painful scary things.

Joe and the lift service in the mornings.   He takes himself for a walk.  Each morning, a van drives up the road and gives him a lift back again.  In one scene, we see how unfocussed that scene looks to Joe.  He has no idea who the people are.  So many of us are faceblind; unable to recognise who is who from their faces.  We have to learn to trust 'total strangers' all the time....and of course, many then have scary experiences and learn not to trust anyone at all as a result. 

Joe's behaviour makes wonderful sense to me, as an autistic adult.  So beautifully played by the young actor, Max Vento.  Very much hoping there will be a series 2 along soon.

Tuesday 26 April 2016

Autism and Acceptance: The 'Overton Window'

I thank my USA colleagues for introducing me to the "Overton Window".  It was a book by Glenn Beck.  It describes which ideas people will tolerate, and which are rejected.  Which are debated, and which are silenced as being too unacceptable. 

I've designed an example. It is shown below.
The example is the reality that some autistic people can make good business leaders. Right now, that's unthinkable by most of the public.  We need people to understand that it's a reality, and gradually change their opinion.   They need to first consider it as a radical idea.  Then realise it's acceptable. Then realise it's sensible.  We can have excellent skills of integrity, fantastic specialised knowledge, dedication, etc.    Not all autistic people are good at being a professional or leader.  Not all people with blonde hair or size seven feet make good business leaders or professionals either.  It depends on the skill set.  But it is true that we have autistic professionals; lawyers, accountants, surveyors, doctors, etc.  Many are too worried to disclose it.  Why?  Because of that 'Overton Window' effect.  The public deciding what's unthinkable, and what's not.

Ideas start off as 'unthinkable'.  People won't debate them.  Then are 'radical'. Debate starts.  Then ideas may be become 'acceptable'.  Then are seen as 'sensible'.  Some go on to be 'popular'.  Politicians mostly like the 'popular' ones.  Those are the ones that get laws, funding, etc.

So much about autism is still apparently unthinkable.  The idea that many of us are women.   Or identify as part of the LGBT community.  Or can talk. Or are just as likely to be nice, kind people.  Or, indeed, can be competent and highly skilled employees and leaders, in the right place/with the right team and support.

People like me and so many excellent colleagues? We gradually shift the 'Overton Window'.  We get people thinking about why it's unthinkable.  Gradually moving the debate along, past 'radical', and into 'acceptable'.  Once it's there, we can start really talking about the realities.  We get the data.  We keep asking to be heard.

Right now, society pretends most of us don't exist.   In media and debates, so often autistic people have to be male, have to be 'dangerous', have to be non-verbal or a computer-geek.  The others of us...the majority....we are invisible.  We're not in that 'Overton Window' of public debate yet.  If we try discussing the 'unthinkable' ideas, we get silenced. We get demonised. We are seen as troublemakers.  The people no-one wants on the media.

Let's work together to get that debate shifted to where it belongs.  Where autistic people are seen as we are, as people with so much to give.  Not as a set of walking myths and misunderstandings, or 'self narrating zoo exhibits'.

I am very thankful for excellent colleagues in this country and elsewhere who want to be part of that change.

Saturday 23 April 2016

Autism: Reactions to medication - background for health professionals

I am not a Doctor.  I am a patient, and an autism expert who has talked about medication with a very large number of other autistic friends, colleagues and family members.  I also train medical professionals on autism, including work with the Royal College of Psychiatrists and with hospital groups and GP Practices nationally.

Autism, as we know, is not a mental health condition and there isn't a medication that 'cures' our brain design.  It's designed to work that way from birth, and stays like it.  But, like everyone else, we can have other health conditions that need treatment.

Autistic people may tend to respond differently to medication.

What have I learned from talking to autistic people? Some examples: 
It may have no effect on us.   It may work far too strongly.  It may have unusual or particularly long lasting side effects.  Especially any drug that is designed to affect the way the brain works.

What can be different, with medications?  An example or two from my own life.  I am a cancer patient.  I had chemotherapy.  (FEC + Tax).  I was so unaffected by a very tough regime of it that I continued to work all the way through.  Some usual side effects, but I was able to keep going.   Then Herceptin.  A mild drug with few major side effects, by comparison.   I responded so badly to it that they had to stop using it.
Alcohol; has no effect other than to numb sensory pain, so I have to be very careful indeed to drink only a moderate amount.
Coffee; sends me to sleep.

Everyone's reactions will be different.

My advice to medical teams is to listen very carefully to what your autistic patient tells you about drug effects.   We are very unlikely to exaggerate.  Most likely, we will under-report.

It can be difficult for some of us to explain how we are feeling, so allow time.  And allow people to write or draw how they feel, if that helps.

Many of us cannot identify pain levels very well, and may struggle to know where pain is coming from, or how bad it is.  Our son played rugby for weeks with a broken foot, because he had no idea it hurt.  The medical team asked him if it hurt, and when he said it did not, they did not send him for X Ray.  Be cautious about accepting our assessment of pain levels.   Some are super-sensitive to pain.  Others barely notice it.  And that can vary over time, too.

Many of us struggle with the sensory environment in medical rooms.  Above, a picture showing how such a room looks to me, but also with flickering overhead lights (like a strobe light effect). Intense colours, blinding glare.  Add in random questions, everyone in a hurry to see patients in super-fast time. Long random waiting times that cause intense anxiety and stop good communication.  Intense chemical smells.  Pain from physical examination on too-sensitive skin.  Intense pain and discomfort from procedures that others can tolerate.  Little wonder that so many autistic people cannot access this at all.  The times I've wanted to run away from medical appointments in the past, because the sensory pain is so bad.  Thankful for a lovely local GP and a thoughtful cancer team.

There's a lot to consider, with autism and health conditions.  Make sure you get really good training.  We know from the recent research highlighted by Autistica that autistic people tend to die some 16 years earlier than others.  Healthcare plays a huge part in keeping people alive and healthy.  That is a situation where we can all work together to help avoid other young people dying.

Be aware of autism needs.  Be aware of potential autism-related reactions and responses to medication.   Be ready to adjust and adapt environments, examination methods, questions and medication.  Get in contact with good autism training teams that include autistic trainers, and check your profession's information and advice on this subject. 

More than a million autistic people in the UK.  It's not a small number.  Make sure you know how to offer effective and respectful treatment for health needs.

Thank you for listening.

Saturday 16 April 2016

Autism: Not a mental health condition. And about 'suffering'

One of the biggest misunderstandings out there? That autism is a 'mental health condition'.  It isn't.
At all.
It's no more a mental health condition than you being male, female, tall, short, or left handed is.
It is a design of human brain, from birth.  Our brains are designed to work differently.

I don't like stigma of any kind.  Not against autism, learning disability, physical health conditions, mental health conditions, or anything else.

I have had anxiety, depression and OCD because the intense pressure of living in a social world not designed for me.  Those are indeed mental health situations.  They are not autism.

Autism is a brain that handles too much incoming info at once, and doesn't always manage it too well.  Fantastic for detecting tiny changes in things.  Rubbish for handling noisy places filled with people.  Sooner or later, all that input causes our brain wiring to overheat, which hurts.  Then, we need it to literally cool down.  Simple, really.  So very simple.

Instead of understanding that simple thing, we've had a world of weirdness to contend with.  Counsellors and other healthcare people who believe it's our 'bad attitude'.  People who believe we are delusional, incompetent, malicious, rude, lazy or any number of other really horrible misunderstandings and nastiness.

We've had people cut us out of almost every service and provision, because 'people like that can't be trusted to know what's good for them'.  Or 'people like that can't be trusted to be a good addition to the group'.

How would you feel if they said that about you as a woman, or as a white person, or as someone with size seven feet?

It's a nonsense.  And it is so hurtful to autistic people. Whether we are verbal or not.

Assume competence.  Assume understanding.  And always always be respectful.

Whilst we're on the subject of respect, we do not 'suffer from' autism.  It is not a disease.  We suffer from other people making our lives hell.  With buildings that cause immense pain, with clothing that hurts like hell, with lighting that hurts our eyes and flickers at a frequency that causes epilepsy-like events in many.  With perfumes that swamp our senses.  With noise that absolutely deafens us.  With attitudes that belittle and 'other' us.

So easy to put this stuff right.  But the longer you leave us out of the room and pretend we are the problem, not the solution, not partners, not friends, not colleagues....well, the more 'suffering' for us there's going to be.  And we have had enough already, thanks.

Thank you for listening.

Thursday 14 April 2016

Glamour, PR and Autism

Something I've noticed about autism.
Attractive, well presented, fashionable, well spoken people.  Specially picked for their media-ready skills.  Sometimes parents of autistic children.  Elegant, co-ordinated, perfect social skills, big smiles, lots of contacts of Just The Right Sort.  Groups of photographers snapping away with their cameras, getting the best possible shots of this wonderful sight.  Big gala evenings that autistic people cannot access.

And, somewhere in the background, out of camera angle, out of sight, out of hearing, autistic people.  An afterthought.

Do we use 'glamour' to cover up a deep fear of autism and what we are actually like?

You see, it's such a strange thing to do, to promote autism acceptance.

I have some marvellously glamorous autistic friends. Sometimes they are asked to go in front of cameras to promote autism.  Great.  Except...they aren't paid.  Only the non-autistic 'stars' are.
Isn't that interesting.  And the opposite of the message we are supposed to be promoting?
The thing is, most of us struggle with fashion.  The clothing hurts so much to wear.  We tend to wear the same sort of thing every day.
We may struggle with makeup and hairstyles, because of sensory and co-ordination issues.

We may struggle with voice tone and 'camera ready smiling', because that's part of autism.
Genuine autistic differences that need understanding, not erasing from view. it the exact opposite of promoting autism, when we put in front of cameras and listeners highly paid people who are 'better than us'.   [Note that I put that in quote marks.  They are not. But in the media-obsessed world we live in, media stars are often given high status]

Look beyond the glitz and glamour, please.  And beyond the stereotypes of 'Oh we have to speak for them, the poor dears, they can't do it for themselves'.  And beyond the strange behaviour of not paying us, but paying other people to speak for us.  Great when we work with fellow non-autistic professionals who are respectful, of course.  But always ask yourself, at any autism event, where are the autistic voices here?  Or autistic communications of other kinds if someone is non-verbal?

We can communicate.  We have very important things to say for ourselves.  And I am so honoured to speak with so many other wonderful autistic trainers and presenters.  For example with Autism Oxford UK, national award winners for their services to autism.

If people are only supporting autism because they like looking at glamorous non-autistic people, with perfect social skills, it's quite possible that they haven't understood autism yet.   We need acceptance, affirmation and money, the same as everyone else does.

Keep searching, and learning.  We're worth it.

Tuesday 12 April 2016

Autism: Girls and School - a personal reflection

There's pretty good science to suggest that 1 in 30 people is autistic.  One in every class at school, on average.
Probably half of those are girls.

Talking with fellow professionals over the years, many have said, (paraphrased) "We thought we'd found all the autistic pupils.  But then when we did a general test of the whole school, we found a lot more.  The quiet ones.  And the girls." 

That's the trouble with myths.  The myth that autism is all about boys.  The myth that it 'looks like' a badly behaved angry individual who disrupts places.  Pure myths.  But powerful ones.  So powerful that the quiet ones, and nearly all the girls, are missed from timely diagnosis.

I was missed.  I grew up in an age when autism was something to do with care home and low IQ and profound multiple disability.  The idea that there were autistic girls in ordinary schools wasn't even imagined.

I was so fortunate, in a way.  I went to school in the age of desks being in rows, facing forward.  In quiet classrooms.  With strict understandable rules.  I could almost cope, all day long. 

But how did I cope?  See that photo at the top?  That's how I see a modern classroom with fluorescent lighting.  It flickers like a strobe light, too.  The noise is deafening, from group work chatter.  From chairs scraping back and forth.  From computer and projector machinery whirring.  Deafening.  Blinding.  Exhausting.  I cannot see who is who.   But I must endure it.   It wasn't quite that bad when I was at school as a pupil, many years ago, thankfully.

I have worked as a Governor of schools for many years until recently.   Going into a classroom and staying there was an act of endurance. I couldn't do more than half a day.  So often, teachers would say, (paraphrased), "We have taken the best advice from Dr Autism-Specialist, but child X is still causing difficulties.  We put in place a structured timetable.  We allowed a time-out space in a quiet area.  We are stuck".  Into the classroom I'd go.  I'd sit there under that strobe light  effect, in the deafening noise.  I'd go into the 'quiet room', with its own strobe-light effect and deafening noise from outside traffic/heating vents/nearby classrooms, etc.   And I'd watch a child enter school, bravely, nervously, and then fade into exhaustion, pain and fear as the day went on.   I'd watch them at break times, nervously pacing the fencing, trying to avoid the bullies and the social pain.  Desperate for quiet and structure in that chaos.  A chaos that others experience as 'having fun'. I'd watch them signal their distress using their own 'language', and get ignored, time after time.  Until they did something 'disruptive'.  Then, punishment.

It helps greatly if schools ask people who can experience what the pupil is experiencing, to a good extent.  Non-autistic professionals are great for generalising.  They can't always help with specifics on sensory issues.  They can't detect the problem.  Their senses are not autistic.  And the sensory issues are huge, for so many autistic pupils.

Socially, well, I would say something about my social skills and school.  But I did what most autistic girls do.  I found someone who 'adopted' me as a friend, and I spent many years learning basic non-autistic social skills from them.  Just by watching.  Mostly, I spent school trying to avoid the bullies.  With it came violence, mockery, things being taken away from me, my stuff being damaged, me being shoved and pushed over.  I was nearly always non-verbal.  I couldn't say anything back.  I was un-co-ordinated and bad at sports.  I couldn't fight back.  Perfect target.  Even better when I'm faceblind and couldn't rightly say who did whatever it was.  After all, they were all wearing the same uniform.  An average-height person with mid-brown hair?  That could have been any one of 100 pupils.

By the end of the school day, I was so exhausted that I couldn't think what to do with myself.  I would walk to the bus, and sit there, pressed into a corner, desperate to find even the tiniest space in which I could be safe.  Often, fellow pupils would get on the bus, and stare at me.  That rude Ann who 'refused to speak to them'.  I couldn't talk. It took forever for me to think of how to say words in the right order, at the right time.  The opportunity would be long past, by the time I thought of it.  The effort was huge.  So, silence. They just thought I was rude.  Coming from a family with little money, I'd be in second hand clothing in 'own clothes days', with a basic hair cut. I relied on free school meals for a good bit of the time, and endured the staring that went with that. But I had a hot meal. That was good.

Most teachers didn't know I was even in their class, really.  I didn't speak.  I couldn't.  I would turn up, and sit there, and try to memorise what they were saying and showing me.  Quietly, in the most well-behaved way you could ever imagine.  There were two teachers who saw me.  Actually saw me.  Saw me enough to ask me how I was.   One, a kind class tutor.  She spoke to me, kindly, in year 5.  I will always remember that act of kindness.   And the Head Teacher, who had told me off in front of the entire school for being unwell too often....but then called me into her study and let me have the space to explain how I felt. She apologised to me.  She had no idea that I went from the hell of bullying at school...home to be a young carer to a very ill Mum. All whilst coping with physical health problems of my own.  I got excellent O and A level results.  I took work home, and memorised it for hour after hour.  I loved subjects which were visual, like geography, art, biology.  Things I could imagine in 3-D. I have a very visual form of autism. 

The pressure on me was relentless.  By age 17, I had developed severe anxiety and panic attacks.  I'd developed food phobias and full-on OCD.  People didn't know.  I had no way to even explain.  My couple of friends didn't know either.  I couldn't say.  I once went to my GP to ask for help.  She told me to pull myself together and stop worrying my family.  No-one knew I was autistic. 

I lived next to a Priest.  He never spoke to me.  I was the 'rude girl' from next door. I was glad of God, though.  I couldn't hear God myself, but I had pictures that showed that God cared about me and loved me.  In the darkest moments, that was what kept me going.  That, and simple structured services each day at school, where I could learn about God from the Head Teacher.  That chance for schools to teach about faith...well, they have no idea how much it can help some pupils.

I wish, with all my heart, for a different world for our wonderful, kind, caring autistic pupils. Whatever their gender, and background.  I wish for a world that didn't hurt.  A world free of bullying. A world where there was always a kind teacher who saw us.   And who asked how we are.

How do we work together, as fellow professionals, on making that dream of safety and thriving a reality?

Autism: We are not objects of Pity

I want to say something about God.

God does not pity autistic people.

Jesus did not pity autistic people.

Some Christians need to stop trying to pity autistic people.

When I first disclosed I was on the autism spectrum, the Clergyperson I disclosed it to said, "I am so sorry.  I will pray for you".

Oh my.

It's a bit like discovering a friend you know by phone and email is Black, and saying, "I am so sorry.  I will pray for you".  Can you imagine their reaction?  Autism is not a disease or an illness.  It is a different brain design from birth.  And, frankly, everyone is loved by God, equally.  Everyone.  Without exception.

Nor are we ways for you to get bonus points.  Not for Being Nice to us.  Not for spending time with us as an act of charity.  Not for bonus points off God for daring to see something of him in us....and saying what an amazing thing that is. 'How incredible that something of God could be glimpsed in you rather than in Perfect People Like Us'.

Drop the superiority complex, please.  Or, if you did not realise that is what it looks like to us, learn from it.

Seriously, do.

We are people.  You are people. We are OK.  You are OK.  God is OK with all of it.

We communicate differently to you.  That is OK too.

Learn about autism.  We are not your ticket to heaven.  We are people.   And, generalising, very 'cat like'.  If you are someone very senior, how does the family cat feel about that?  Do they defer to your superiority?  Didn't think so.

Well, that's how we feel about it too.  I cannot 'see' social rank.  I treat everyone as a loved friend. You will be pleased to hear that I do not sit on peoples' laps without permission, though.

It's very levelling stuff.  You'll learn a lot about yourself from us.  Try it.

Thank you for listening.

Saturday 9 April 2016

Journey to Understanding Autism

I'm Ann.
I'm autistic. So is our son. Autism is not 'incompetence'. It is a brain difference from birth. Each one of us unique and with something to share.
I didn't use words to communicate for the first ten years of my life. I could only repeat phrases I heard. It made no sense. I thought only in pictures. I understood everything said, but in picture form...and had no way to relate it to body language, face expression, eye contact, social stuff generally. The social 'context' was missing. People didn't notice I was autistic. They thought I was just 'rude'.
For the next ten years, I couldn't speak for more than a small bit of each day. They didn't notice that I was autistic, I was just 'rude', you see. Or 'quiet'. Inside, trapped in a body that wanted to speak, but could not.
I'm still partly non-verbal, when stressed. When it happens, often people don't realise, and think I'm just rude.
I have major sensory processing difficulties. When I can't access an event, often people think I'm just rude.
I cannot recognise faces. When I walk past a person, they often think I'm just rude.
That's the awful, draining thing about autism. The instant assumption that I spend my life being rude.
The loneliness and anxiety that results.
I can speak a lot sometimes, now.  But now, I'm sometimes told that this means I'm not fit to speak about autism...because I can speak. Irony.

When I ask that people give us a chance to huge cost to ourselves...rather than speaking for us...I am told by a few that this is rude too. How dare I. How insulting to say that I and my friends and family and autistic colleagues would like to share our authentic experiences. Not as a sole voice. As one authentic voice with much to share. And with others to listen to, too.

 Surely I know that 'their child' cannot ever communicate and that I am Nothing Like Their Child. And that theirs, as non-autistic people, is the proper voice for their child. I am insulting them. It is all about their feelings. How DARE I. HOW RUDE. After all, I am only one person so what could I know, eh. With capital letters, sometimes with swear words. Sometimes as a small angry mob, cheering each other on, to humiliate and silence me.

And, my voice is silenced. In fear.

They have not understood autism, at all.
Their child will not benefit from what they would have learned from me and all the other autistic courageous speakers and Typers.
Their child's world is not better for this.
It is impoverished.
So many autistic adults commit suicide, to get away from the hate. Or die early from the stress and loneliness.  We know this from the new research.

This is the future they create for their own children.

I work with wonderful autistic friends of all kinds and ability ranges. I am a professional, speaking at national and international conferences. Alongside non autistic friends. They learn from me and the others. That's the idea.

Nothing about us, without us.

And all autistic children communicate. Find out how, and what it means, from the autistic adults.

Meantime, glad of friends who stand up to those who yell in our faces when we try to be heard.

It's a journey, learning about autism. If you believe an autistic adult is being RUDE, you have only just begun that travel. Sit back, and listen, and learn.

Thursday 7 April 2016

Ouch. Nothing about us without us?

Nothing about us without us.

This is central to all equality work.

We don't ask men to be the sole speakers about women's rights.
We don't ask white people to be the sole speakers about Black and Minority Ethnic equality.
We don't ask straight people to represent LGBT people without the LGBT people being present.

In every situation, we get equality by listening to lived experience.

If you are a non-autistic parent of an autistic child, you can talk about parenting, yes.  Respectfully.  With the consent of the child in your life, or in ways that respect their privacy and personhood.

You cannot advocate for autistic people generally on your own, though.  No, really, you can't.  Not on your own you can't.  It just looks like a big dose of Privilege, and a big dose of 'having all the limelight'.  It devalues and replaces our voices with what is often an inauthentic piece of guesswork or parroting, when people push us out of the way and talk for us, without permission.

If you are going to talk about us, you make very sure indeed that you are using respectful language.

You make very sure indeed that you link to respectful places, and not ones that routinely abuse autistic people.

You make very sure indeed that you do not retweet tweets that link to those abusive places and practices.

You work with us on the speech.  You get us involved with the speech.  You want to speak with us, not 'instead of us'.  You don't use your Privilege to muscle in and shove us out of the way.  Or not even have the courtesy to talk with us.  After all, if you are in a privileged position, you are never going to have to prove your worth.  People like me can spend a decade trying to be heard. I spent a en years non verbal. I sometimes still am. Communicating comes as such a price.  Privileged people can stroll in and be taken seriously instantly, even if they are talking rubbish. Some do. Some are fine of course. But... That's what 'privilege' offers.  And it is the opposite of autism equality.

Suppose someone said to you, "I went to my doctors and discovered that my child is gay.  I cried. It was relief as much as anything else.  Now I know that my child has Gayness.  It explains why they were so poofy.  We ought to make sure that being a Person with Gayness is not seen as a deficit any more.  Here, have a link to Britain First on my social media feed".  We can now take in a breath of would be appalling, wouldn't it.

How good should a gay person feel, reading that?   Is that 'awareness raising' of the humanity and equality of us gay people? 

I've actually had people tell me that I should be grateful to be sidelined, and other more privileged voices decide what to say about me and my community.  After all, it's 'awareness raising'.  By properly beautiful people with lovely voices.  Yes, awareness of how to make us feel worse.  Awareness raising that we are not even fit to speak for our own cause, because we're not media-attractive enough. Awareness that it's ok to shout as us, mock us, take offence at us trying to find our voice. That is so appalling.

Don't be that person who sidelines us whilst claiming to be on our side.

Thank you for listening.

Tuesday 5 April 2016

Autism Myths and Religious Faith - Surprising Stuff

I've worked with faith groups for more than 20 years.  I was one of the ASPARRG group, looking at autism, spirituality and faith issues with Professor John Swinton, Olga Bogdashina and many well known others.

I wrote the CofE autism guidelines for churches, commissioned by the Diocese of Oxford, and with contributions from so many excellent people and groups. I speak at church and faith conferences, and have friends of all faiths and none.  My own faith is so central to my life.

But...those autism myths...let's have a look at a common one about religion.  "Those autistic people can't have an understanding of God".  Sometimes it's more blunt than that, and the speaker announced, glibly, that "People like that don't have souls".  Oh dear.  Dehumanising, 'othering', damaging, horrible myths.  The moment we announce that people aren't human, well...we know where it leads, don't we...Our history involved a lot being put to death under extremist regimes last century, described as 'useless eaters' and worse.  It's a history of my people that is only just starting to come into public recognition.  A history of eugenics and hate.  Even now, autistic people live lives on average 16 years shorter than those of others, often because of the relentless hate and pain, loneliness, incorrect medical treatment, and lack of understanding.

'But, where's the research about autistic people even being interested in faith, Ann', I imagine some might say.  Aha, there is research.  For example, that done by Chris Bonnello, a mathematician.  He asked 477 people for their views on a variety of things.  81 of the people were autistic.  This is what they had to say about religion in a question:

Two pictures, showing results from the statement "I have religious faith: Strongly agree, agree, neither agree nor disagree, disagree, or strongly disagree".
The autistic people in the survey? 46% said yes, they have a religious faith.
The non-autistic people in the survey?  39% said yes, they have a religious faith.
We learn that the 'I might be autistic' group had the same sort of pattern.
Probably not a great statistical difference between the groups. 
The only real difference between the two pictures is for 'neither agree nor disagree'.  23% of non-autistic people ticked this.   Only 13% of the autistic people did.

So, autistic people are every bit as religious and faith-filled as non-autistic ones, in this survey. 

Who are our faith leaders, though?

We know that, for example, only about 350 out of 16,000 CofE churches have ticked the A Church Near You box to say they are 'autism friendly'.  A search online doesn't reveal any number of others announcing it.  I don't even know where to start looking for all the other faiths and denominations for that data.  But I do know how hard it is to access faith services, in many places. I'm blessed with a truly lovely faith community of my own, and a Vicar and team who enable me to lead informal worship for a small group, setting up a dementia service with others, be on the PCC, be a prayer partner to so many in confidential settings....contributing to it all - not being a 'burden'.  Goodness me, no-one is a burden, whether they can do those things or not.  God loves each person the same. It isn't a competition to see who is the most able.

So, a million autistic people in the UK.  People of faith, the same as other people.  A third are likely to be part of the LGBT+ community also.  All are people who are much loved by God, with gifts to bring to any faith group.  Prayer, worship, specialised abilities, immense morality and honesty, patience and determination when set to a task.  And so many desperate to know more about God.

God was the first individual that I knew existed.  God's presence was the first thing I understood.  And it's been God who has been there for me in the darkest times.  Even when I was non-verbal and unable to tell another person what it was like for me.  I encounter God through pattern, through colour, through nature, through safe touch, through justice, through safety, through music...and so much more.   I can't 'hear' God.  But I know He's there.  What of 'that of God in each autistic person?'

We cannot say to a part of humanity, "God didn't want you - he decided you were too much trouble to bother with".  The exact opposite is true.  And that, my friends, is the question that God has asked of us all:  How do we respond that that of God which is autistic?

How do we respond to those autistic people who wish to know more about their faith, and join in with faith activities?  In any faith group?  It's a human right, to be able to access a faith, if people so wish.  Do we wish to deny people that very human right?  Surely not.
I am speaking at conferences this year on this very subject.    I'd ask all who are involved in the lives of autistic people to think about the role of faith...the role of being able to have a choice about it...the part that it could bring to lives often desperately lonely and cruelly cut short.  It's a personal choice, faith.  Of course it is.  But right now, most autistic people are given no choice at all.  And that's not OK.

I'd ask that we do our very best for autistic people too.

Autism: Adults would like great days out too please

I do a lot of work on autism access.  I've been honoured to work with a good few of the historic building charities and groups across the country, advising quietly in the background.  Helping them gain autism access awards.  Helping them increase their visitor numbers.  Helping autistic people of all ages to know what's ahead, so they can plan their energy levels, and really enjoy the day.

But, especially as an autistic cancer patient and a full-time business owner, my time is limited.  And I get really tired sometimes.

As nice as it is to do the pioneering work for places, I love actually having a day out somewhere new.  Same as almost everyone else does. A day where I can enjoy myself, relax, and know that I am going to be within safe sensory limits.

So few places have information for autistic adults.  Just so few.

More have information for autistic children.  These often include a 'fun pack' involving drawing and toys.  And a family room where parents/carers and their autistic children can go.  Sometimes a play area with swings or a nice slide. 

These are good things....for children.

But they're a bit of an inappropriate thing to offer the MD of a firm of Chartered Surveyors.
I'm not sure that the parents of an autistic child are going to be thrilled if I join little Sam on the see-saw or on the soft play area.  They might be even less thrilled if it was a couple of (say) autistic male rugby players in their 30s.   Nor am I going to be consoled with a squishy toy.

Most autistic people are adults.   Male, female, of all ages. Giving me a set of materials designed for a six year old is not appropriate.

Please, if you are setting up access for a disability, don't assume that everyone is a child.
You wouldn't dream of making that assumption for wheelchair access.  Nor for those with visual impairment.

Please don't do it for autism either.

Plenty of us to ask about good resources for autistic people. We're very happy to help, or direct you to others who can.

Thank you for listening.

Sunday 3 April 2016

On why you should light up any colour but blue for Autism

Fear is not a 'difference of opinion'.
Imagine, if you will, that you have a Black friend. You probably have lots. So imagine it's one of those lovely people.
Now imagine that a group wanted to promote equal rights for Black and Minority Ethnic dressing like the Klu Klux Klan.
"Oh but I'm not actually Klu Klux Klan, I just dress like them. Really, I'm very keen on Black rights."
Now, if you're dressed all in white, in that outfit, like the Klu Klux Klan, how do you think that Black people feel about this?
Are they going to care that you are supporting their cause, when the colour and outfit you have chosen screams the exact opposite?
When people "light it up blue", they are using a colour and a campaign that was started by the 'Klu Klux Klan' of autism.  And they are still the main promoters of that colour and campaign.

It is not a campaign by autistic people, or for us.  It is a campaign that was based on eradicating us, and normalising us, and in every way removing our voices.

Imagine you are a member of the Deaf community, and a Sign Language user.  You communicate using sign, body language, face expression, perhaps lip movement.  You know that you need people to communicate in a way that respects your needs.  
Remember the times past, when the Deaf community were forced to use spoken language, some punished for using Sign?

We are forced to speak using non-autistic language, and punished for using our own.  Truly punished.

Autistic people haven't had a nice chat and a difference of opinion with this hate-group. We've been shouted at, 'torn apart' in forums, belittled, mocked., silenced  The group in question has aligned itself with a centre that ties children to a table and repeatedly electrocutes them. No, really.
The group likened us to the living dead, monsters who destroy everything in our path.
It is absolutely horrific. It is traumatising.

It is not a 'difference of opinion', it's a fight for recognition as a human, and a fight for the right to live, as ourselves

So, the next time you see someone who has 'lit it up blue' for autism 'awareness', please tell them they are disrespecting and frightening the very people they claim to want to help.
Ask them to support respectful campaigns by actual autistic people. There are plenty out there. 

Saturday 2 April 2016

Autism: "Isn't a cure a good idea to save you from pain?" No.

I'm going to delve into the 'cure' debate.  Brace yourselves, good people.  And listen, thoughtfully.  This is of course just my 'take' on this.  Go find others to talk to, too.

I respect the choice of individual autistic people.  A smallish number of autistic people want a cure for autism.   Whatever that might mean.   A smallish number of parents and carers want a cure for autism. 

Quite a few of the bigger charities and research groups hope for/look for a cure for autism.  That's interesting isn't it.

Most autistic people do not want a cure for autism. In fact, many of us are quite aghast about it.  
I think I can be confident in saying this.  Any number of surveys and polls have been done, over the years.  An example?  Chris Bonnello ran one in 2015 with 477 participants - self selecting.  He's a mathematician by trade, so knows his statistics. is the link.  Yes, it's just one survey.  'Google'  is your friend here, though.  Or other good search engines.  Find other surveys.  The results aren't a lot different.

So, that survey.  Cure.  What does it say?  

It asked people if they are autistic, or not. It asked if they wanted a cure for autism.  Some 80 autistic people in the survey. That's a reasonable number.  14% wanted a cure.  A clear two thirds of the autistic people said no to a cure.

What of the non-autistic relatives, though?  Did they want a cure? 38% did.

This is interesting, isn't it.  Still not a majority wanting a cure.  But a much bigger chunk than the autistic people.

How does one 'cure' autism?  What would that even mean?

Seriously.  Autism has positives.  Honesty, integrity, greater morality, amazing focus, senses that can detect danger before others can.  Generalising, of course.  But those are well known and well researched findings.  What are we curing?  How do you intend society to 'cure' just the problematic things?  What does it say about society if 'cure' is based on fear, hate and myth, which frankly a lot of this quest is.  It's based on worst-case examples, mostly.  And often 'worst cases' where teams and relatives haven't understood autism and how to actually help.

It's a brain wiring difference that happens from before birth.   Arguably it's a quest like 'curing' left handedness, 'curing' femaleness, and 'curing' being gay.  "Want to be cured of your femaleness? After all, most women are weaker than men!  Most women cry more!  I knew a woman who was violent, and more who were in pain, therefore they must all be cured of their femaleness! " That would be a bit weird, wouldn't it, if we thought like that.  Well...we're thinking like it with autism, folks.  And, of course, in some cultures, being female comes with a very heavy price indeed.  Currently, in our culture, being autistic comes with that same heavy price.

I think some well meaning people imagine it would just be something that takes sensory pain away, so we can cope better.  Well, I think most of us would like less pain, for sure.     How about the radical idea of changing the thing that hurts so many of us?

I'd say they can 'cure' 95% of our pain without curing us. The pain these days is often from artificial environments, many designed to overload the human brain. Take your average supermarket. In ye olden days, I could go into almost every small shop in the UK without difficulty. Very simple layout, simple choice of product, ordinary lightbulbs, one old fashioned till that would simply go 'ting' when opened.

Now, every corner store has strobe-effect fluorescent lighting, bright shiny colours in every corner and on every surface. Endless perfumes and smells competing with one another, tills that beep and flash, and I am in increasing pain.  I was involved in creating this film from the National Autistic Society which gives you a clue.  Turn the sound up first.

The odd thing is that most other people don't like sensory overload either. But the marketing geniuses do, because those things push ordinary brains into illogical decisions: "Oooo I must have the bright, shiny, fragrant thing!". (...Even if its chemicals make me ill and harm the environment, but make big profits for companies.)

School classrooms.  Now such a sensory nightmare that almost no autistic child can cope.  We coped a lot better before they did that to the classrooms and changed the teaching styles to endless chatter. I note that our results in schools are way worse than a lot of other places.  I'd argue most children can't cope with it.

Arguably, we are life's 'canaries down the mines'.* We spot environments that are unhealthy for everyone, not just us.

We need to have a think about what we mean by 'cure'.

And we need to be so very careful that the 'people like that are all monsters/tragedies' groups do not get their idea of this 'cure'.  We're the people who test-drive everything in your life, quite frankly.  Internet?  That's us.  Car's brakes that work every time?  That's us.  Planes that stay in the air?  That's us.  Our society's infrastructure, so much music, so much art - so many things which autism has brought to you.  We test and test until we know it works. We can see radical possibilities. I generalise. But goodness me there's truth to it. Want a world without us?  Think it's going to be an improvement?  Think again.

One of the other 'cure' arguments I hear?  "People like that are a drain on our economy.  Every autistic person costs millions to society.  They should have to take a cure, or live without money and support; after all, they would have chosen to be autistic when a cure was available".

Let's look at that one, too. 
a) There is no cure.  One cannot cure a different brain.

b) As we can see above, most of us wouldn't take one anyway.  What are they going to do, force it on us?  Starve us into taking it?
c) We do not cost £millions to society at all.  Only 1.6% of autistic people are in a care home.  Quite a few are with relatives and unable to work, though.  Nearly all of us want to work.  The biggest thing stopping us being taxpaying working members of society is the lack of access to workplaces.  We are being prevented from working.  If society wants to reduce the costs of this, try funding BSI Building Standards to reflect autism access, not just wheelchair access.  Swap fluorescent bulbs in the workplace to autism-friendly ones.  Just ask people what they need.  So simple.  Just do it.

I paid just under £1 million in taxes.  I've added it up.  I'm a business owner.  I'm autistic.  I know any number of other autistic people who also pay taxes.  If we assume that Bill G of a well known large software company is autistic, he's paid more into society than most of the rest of the world put together.  So I say the whole 'they cost us money' is generally nonsense.  We need good research, certainly. But it must be based on real questions, not myths.

Societies...caring ones...will want to put in place proper support for those unable to work.  Both for the individual and for their families.  Societies...caring not respond to human need with what is basically eugenics.

Thank you for listening.  Go find some lovely autistic people and get to know us.  It'll help.  A lot.

*Miners used to take a canary in a cage down the mines. The canaries could detect poisonous gases that the miners could not. I'm not recommending gassing any real lives canaries, I hasten to add...