Saturday, 16 June 2018

Autism: The Train Journey. A discussion about ability and enabling.


The picture shows the inside of a train carriage. There are no passengers. There is overhead strip lighting, and the seats are orange and red.  It is a familiar sight, for me, as my local train service has carriages like this.

I worry a lot about going on public transport.  Sometimes I can't.  Sometimes, I can.  That can I/can't I thing is what causes a lot of confusion amongst non-autistic people.  Some get very angry with us, in fact.  "If you could take a train last week, WHY can't you take a train today?  You're just lying to us for attention!"  I even got followed by an angry person once, determined to prove that I really could use trains sometimes.  Which is odd, because we already know I can sometimes use trains.  Some people are very strange...

Pretty much 100% of autistic people will tell you that it is totally correct that sometimes we can do something, and sometimes we can't.

Let's talk about why that is, and why that is a known and standard feature of autism.

Firstly, if this is new to you, you need to read up on Spoon Theory.  
http://annsautism.blogspot.com/2018/02/autism-and-spoon-theory.html may be helpful, with the link to the original author of this.

Second, let's have a look at a train journey I made this week.  I had to go to Manchester for an academic course. Luckily, one where I wasn't the speaker, so I didn't have to plan for being able to speak, at all.  Er, quite literally - I could have gone through all three days without saying any words and it wouldn't have mattered.  I had ways round it with technology.  So, I didn't have to factor that in, and could save the 'spoons' from trying to talk, if I needed to.  

On the way there, I knew I had the whole day to cope with that one journey, and I had planned and planned it.

On the way back home, I knew I would be tired after the course.  I had to factor in everything that could happen. So....

I'd spent a lot of time thinking about station layouts, restaurant menus and pictures of the restaurant we would use.  Planning how to get home from the train.  Lots and lots of preparation and text communication.

Here are the other steps I had to take.  This is a personal list, and of course every autistic person will have their own best ways of coping.  Find out what they are.  Here we go...  


Firstly, travelling most of the way with a safe, known friend.  I was tired, (I had experienced an autistic shutdown earlier in the day) so this was a huge bonus to me, as the friend is jolly good at having ideas when I'm stuck.  

We'd started with a taxi journey to minimise exposure to noise and traffic on the way to the station.


We got into the restaurant at the station when it was a quiet time to eat.


I'd taken painkillers to take down some of the sensory pain.  [I don't mean that I recommend this, by the way - always consult a GP about what's safe to do and what is not].


I had a medium glass of red wine with the very-familiar-choice-of-meal. A glass of wine, for me, also takes down some of the sensory pain. [Note that I am not suggesting that drinking alcohol is a good strategy.  Staying firmly within very safe limits for people is very important, so this is an emergency and very occasional thing for me on a long train/plane journey, not a standard thing to rely on.  Never ever drink and drive. And of course some people cannot or do not drink alcohol anyway].


I knew which platform we were going from, because my phone was giving me updates on the train and timings.  Technology is great!


We could see the departures list from the restaurant within the station, so could double-check that there was no change of time.


We knew which seats we were going to be sitting in, because we'd pre-booked them.

We were able to get on the train in good time.

First eek...the train seating technology was broken.  My seat had someone sitting at it, and the display said my seat hadn't been booked by me.

So...we improvised.  Hurrah for the autistic pair!  We sat at another pair of seats, which had a table as well.  Bonus.


I had a window seat, so I could see the beautiful countryside.

Second potential eek - a passenger joined us and wanted to talk.  But, strangely enough, it wasn't eek.  She was lovely.  And, by this time, we had another glass of wine.  See above for the warning re Not Drinking Too Much.  At two glasses of wine, I am nicely relaxed. I stop at two. I was relaxed enough to do a bit of chatting with the lovely passenger, and of course my travel-friend.  On subjects I know about.  Luckily, at my age, I have practised short conversation about all sorts of subjects.  And, being a person of more extravert sort (as many autistic people are), I like meeting people.  Honest, I do.  I just don't speak non-autistic language well enough to do it for long without confusing people (and vice versa).   It's a bit like you going to a foreign country and having a go at speaking to a person who only speaks a different language.  Can be great fun, but you're never quite sure whether you've accidentally insulted them...


Taking my glasses off is a good way to pretend eye contact, as well.  Or, if they're still on, unfocusing my eyes so I can't actually see the eyes of the other person.  Eye contact is like an electric shock, for me (and for many other autistic people).

It was a long train journey, but I knew that my partner was waiting to collect me, and was going to be on the platform when I got off the train.  He was texting me regularly, so that I was reassured on that. 

I had use of my smartphone and tablet, both of which connect me to online friends and information.  I was able to check and recheck that the train was going the right direction, and was more or less on time.  And indeed be helpful to the fellow passenger about that, which is nice.  I like helping people.

I had headphones with me which I could have used to cancel out some noise.

Squished comfortably into the seat corner and window, I had lots of sensory feedback from my body on where I was. And no chance of falling over.  Standing up on a train is very disorientating - lots of moving scenery and wobbly train bits and people jostling up against me, so if I'd had to stand for long, that would have been a 'can't'.  On busy commuter trains, sometimes you have to stand all the way.  As I have arthritis and sensory damage from chemotherapy as well, sometimes I really really can't.

Outside, glorious scenery.  Fields, streams, farm animals, horses, trees, sky.  Those are all favourite things to look at on journeys, for me.  When we get into the cities, I look for churches and JCBs. [And why not indeed...] I learned categories of things one at a time, as a child, by getting myself books with the pictures of the different animals/items/machinery, and memorising them all.   I keep that database of pictures in my mind 'up to date'.

My friend got off the train an hour before I did, but I was now in very familiar bits of the country, where I knew that if something went wrong and I had to get off the train, it was an easy drive for my partner to fetch me home.  I knew I didn't have to speak when home unless I wanted to, and I had no responsibilities.


So, the train journeys there and back were successful, for me.

But...the proverbial wheels could have come off that, at any point.  [Not literal wheels.  Well, I hope not, anyway... ]


If the train had been cancelled.  If I had to stand for long.  If we'd had a loud or unpleasant person round us.  If the train had squeaked, screeched and rattled all the way (which some do).  If I had been feeling in any way unwell or in extra pain.  Well, then I would have been plunged into an autistic shutdown.  And that's not something any autistic person wants to experience.


So, sometimes, with huge forward planning, support, technology, expense and luck, I can use public transport safely and well.  Hurrah!

And sometimes, autistic people really can't risk it.  Which is why I advocate for autistic people to be enabled correctly for the situation they face that day.

If we say we can't, there's good reasons.  Well worth learning about this, so that you can be part of enabling us to get to places.

Thank you for listening.







Wednesday, 13 June 2018

Autism and Being a Responsible Citizen



The picture shows a group of people. Various ages, genders, ethnicities. It represents any group of autistic people in this example.

You may have been expecting a younger boy, with a rather sullen expression and a tendency to play computers and be wildly behaved, or geeky?  Or a teenager or young adult of similar type?  Yes, Society invented a myth about what autism looks like.

It also invented myths about how responsible we are as fellow inhabitants of this beautiful earth.

We see it mirrored in some press and web reporting.  The stereotypical male is produced. 
 We will be told that he is a tragedy, or a criminal.  Well, unless he has heroically overcome these mythical only-two-states-available, and is now a genius or an inspiration.

It is as bizarre as imagining that all the people in that photo were just like that.

Autistic people are not aliens. We are people. People of all kinds. All genders. All ages. All intelligence levels. All backgrounds. All faiths and no faith.  Just like other people... and we are also autistic . Autism is a different social communication method, a different logic based understanding of the world. Often hugely creative and great seekers of social justice and fairness, most are desperate to follow rules and get things right.  Our brains take in and process too much information from the world around us. Sometimes that is a beautiful thing to experience. Sometimes intensely painful if we are not able to recover between sensory overloads. Nothing whatsoever in the diagnostic lists links to crime.

Some autistic people end up in trouble with the law. I and my fellow trainers have had the honour of training hundreds of Police, Court Judges and similar, for many years. We have had endless conversations with them, and with autistic people who have ended up a encountering the criminal justice system.

Nearly all such autistic people are victims. Targeted for sexual assault, for fraud, for stalking, for bullying, for every crime imaginable.

Some autistic people are wrongly arrested for behaving in erratic ways during a brain event, which is not a criminal act.

Some are wrongly arrested because their behaviour looked criminal, but was actually just autistic , e.g. using touch to find out who a person is. Why use touch? Because some of us are faceblind and cannot see faces, so while young, may have attempted to feel who it was.  As a Blind child would. Some may have mistaken a social rule, and been then accused of stalking. Various examples of mistakes exist. Some utterly tragic.

Some are actual criminals. No more likely than is the case for others. We know this from good research. Research that is there for all to see.

So, what is happening when we see report after report in some places, linking us with crime? 

I do not know. But I do know that e.g. gay people also can face unwarranted accusations of general criminality. I know that some People of Colour face such accusations also. For many years’ women were seen as too hysterical and incompetent to hold important roles. As a society, we have accused all sorts of groups of hugely unfair things over the years. Different? You must be a criminal...

Well, no. Actual criminals are highly unlikely to be autistic.

It is time to acknowledge that most autistic people are responsible, gentle, sensible people who exist peacefully and lawfully amongst us. Many are people of the highest integrity. All are worthy of a place in a world, free of false stigma. Bringing caring, friendship, passionate expertise, honesty of expression, and diligence. 

Thank you for reading.

Tuesday, 5 June 2018

Autism: No, we're not stalkers, dear Church.


A few years ago, I was stalked.  It went on for some two years, and, at the end of it, there was Police involvement.  It was an horrific experience, and not one I would recommend to anyone.  My car was nearly forced off the road.  I was pursued by the person and their friends to such a degree that I had to run from them.  At one stage, when I was in a secure room, whilst security services dealt with the situation, I made a decision that no person should ever, every have to experience stalking.

I worked tirelessly for charities, ensuring safety for victims.  Listening carefully in support groups.  Working with people to get them to justice and peace at last.  Taking part in national research.  Promoting safety resources.

I opened the Church Times today.  It's a publication for the Church of England.  In it, an article about how some people in communities stalk church leaders.  I felt that immediate empathy, that concern for them.  I knew what it was like to have to live in that kind of way, always checking carefully before you are able to go anywhere, or do anything.  Having to be concerned about every silent phone call, every time the person is caught outside your house when they had no business being there.  The hate message, the anger, the destruction.


But then....

....then I saw that one of the key things for this was allegedly being autistic.  That autistic people (Asperger Syndrome) meant someone was likely to be a stalker.  And... it was like the world stopped for a moment, in horror.

You see, I'm autistic.  So are my lovely family.  So are many of my friends, and colleagues.  So are quite a few of my Clergyfriends, and my companions and fellow workers in all the church work I do.   In the charity work I do, there are my lovely autistic fellow leaders.  In the world of academia and conferences, so many valued autistic speakers, trainers, writers, authors, poets.  Every single one of them working towards peace, towards respect, towards collaborative caring and good outcomes.

I wrote the national guidelines for welcoming autistic people to church.  I'm no stranger to church life and how autistic people can fit within it. Nor to experiencing some of the strange myths around autism, based on the behaviour of a handful of young boys who had multiple disabilities or other conditions that affected judgement and control.

So, we'd better see if there's any actual evidence to support this strange idea that Clergy should fear autistic people.

Firstly, we know from robust evidence that autistic people are, by a huge majority, the victims of crime, including being victims of stalkers and every other kind of predator out there.  Most of the two million of us in the UK have experienced crime of some sort against us.  3 out of every 10 autistic women have been raped.  Most of us have responded only with love and forgiveness, with social action and good solutions.  It's been a pleasure to work with the Police for some years, as a member of the external training team.  We know that very few autistic people are criminals, although some are turned into 'stooges', doing the bidding of manipulative others who get them to do criminal things without realising it's criminal.  That's not malice by us - it's a brain that may assume that people are telling us the truth. A vulnerability, not a criminal mindset.  Are some autistic people also criminals?  Yes.  So are some people with size 6 feet, and some people with short hair.  Having size 6 feet does not make you a criminal.  Nor does being autistic.

Generalising:

We know that autism is a communication difference.  We use social communication differently, and find it very hard to interpret subtle signalling from non-autistic others, so need really clear instructions from non-autistic people.  We are often effectively 'blind' to subtle hints to  leave someone alone, or to stop talking.  That isn't malice, any more than it would be if we were Blind or Deaf. and missed the cues that way.

We also, as a people, tend to communicate a lot of information, and will happily repeat it until the other person signals that they have understood.  In our own culture, this often is polite, and expected.  It is not a sign of malice.  Different cultures across the world have their own set of 'social rules' about what is too much, or too little, communication.

We also, as a people, tend to want to know a lot about someone.  Not in a stalkerish way, but because we're genuinely curious.  And may genuinely, within our own culture, expect that the information-gathering is a good thing.  This is sometimes misinterpreted as 'obsession'unfortunately.  If one is not able to see a person's face clearly (because many of us are faceblind, and read face clues differently), trying to get clues about what the person thinks of us is very hard.  Finding out information is a way to fill that gap, to prepare ourselves for possible conversation, not malice.

I then tried searching for this data on how many autistic people are stalkers.  Given the research I do, I assumed that this would be easy to find.  After all, if we have professionals claiming we're this bizarre risk to the UK's humanity (er, all 2 million of us?), they must have seen that robust data showing the statistics, yes?

Still searching.  


I can find a few vague references from stuff a long time ago.  From before we even knew what autism is, on the modern DSM V understanding.  Before we even really knew that half of autistic people are not male, that most are not young.  Before we knew that autism wasn't anything to do with 'bad behaviour', or lack of empathy.

 I can't find data showing  that autistic people are more likely to be stalkers, anywhere.

It's quite something to have your church leaders, from the place you trust and respect, looking at an article suggesting that I'm some sort of threat to them.  That my family might be.  That my friends and companions, colleagues and fellow researchers might be.  It is a great sadness, given that the entirety of the argument appears to have been invented.  We are no more likely to be criminals than anyone else around you.


I would love a world where we learned that communicating differently is not a sign of malice.

I would love a world where we learned to honour and respect difference, rather than assume that different = monster.

And I would love to pick up a church publication and read about the realities of autism, not myths and overblown horror stories.


Our autistic children are going to enter a world where their average life expectancy is 54, thanks to the level of poverty, bullying, crime, lack of access, and hate that they will experience.
They will face a life where they have a nine times greater risk of taking their own lives, because of that stress.
They will endure the humiliation of being described over and over again as things they are not.
And on top of that, feared in church, when they go in to share fellowship and hope with other Christians?


If we, as fellow Christians, want this for autistic people, how far from the love of Jesus have we strayed?  It is heartbreaking.

Find out about us.  Because we're already your friends, and already sharing life with you, in peace.

Monday, 28 May 2018

"If you've met one person with autism, you've met one person with autism"? Read on...


Turning the pages of a book, I read the words of an autism researcher.  What's the point of the word 'autism', they asked, if every autistic person is different?  They referred to the phrase, "If you've met one person with autism, you've met one person with autism.".  It's a well known phrase, although using language that is long out of favour in the autistic communities.

There seems to be a misunderstanding.

All people are individuals.
People who are wheelchair users are individuals.
People who are Blind are individuals.
People who are Deaf are individuals.
People who are all 5ft 6 are individuals.


Being an individual does not mean you are suddenly able to see.  Being an individual does not mean you are suddenly able to hear.  Being an individual does not mean that you have stopped being autistic.  Being an individual does not stop lots of people from being 5 ft 6.

What do we mean, when we say that all autistic people are individuals?  Does it mean that our needs and differences are so diverse that there's no such thing as 'autism'?  I do not believe so, no. 

Autistic people have sensory processing differences that are markedly different from those of others. I've yet to find one who doesn't, though some are blissfully unaware of those sensory differences as yet.  Which senses, and in what way...that's the difference.

Autistic people have a need for forward planning and good routine, to avoid sensory and social overload.  Much much more so than an average non-autistic person.  The differences are around what helps with that, and how much variation can be tolerated from day to day.  

Autistic people have difficulties interpreting the body language and face expressions, eye contact and voice expression of non-autistic people, and vice-versa.  What's different is the degree of it.

Autistic people need life to be logical, fair, honest.  Far more, on average, than the average non-autistic person.   Our outrage when people break rules, tell lies for personal gain, can be far, far more outraged than a typical non-autistic person.  The differences are in what the person finds particular outrageous.

Each autistic person also has their own personality.  Some quiet, some not.   Each is their own age, from their own background, their own accent, their own educational level and set of IQ and ability scores.  Their own gender and sexuality identities. Their own faith, or not.  Their own ethnicity.  These and many other individual things.  Those are not different 'autisms'.

For a long time, we had standardised autism to an extraordinary degree.  We seemingly believed that all autistic people were clones of 'geeky boy', Rain Man, or Temple Grandin.  It seems to have been a huge shock to a number of professionals and researchers that we are a varied bunch. But a varied bunch who are all autistic.


Simple, really.

Sunday, 27 May 2018

That group includes autistic people?

I am grateful to an online colleague for mentioning this diagram.  It shows different levels of attitudes to a group.  How much that group of people is really included, really empowered, really respected and trusted.

These are some possible thoughts about it all, just to help others to start with the thinking.


At the bottom of the 'ladder', manipulation.  Where the people with power decide that autistic people must simply be lied to, to get us to do things that they want.  Or, lied about, to get others to ignore, exclude or fear us.  We're actively distrusted.

Next up, just therapy.  Not any actual consent or sharing. Not good therapy. The sort of therapy where the people with power decide we are broken, and need fixing.  So they make us do therapy whether we consent or not, whether it is good for us or not.  No matter how much we express pain, fear or exhaustion.

Next, just informing autistic people.  We are not part of the decisions.  The people with power make the decisions, then tell us what those are.  This is not sharing, or respect, or inclusion.

Next, just consulting us in problematic ways.  (Not good consultations with trusted partners.)  We do not decide what we're being consulted on. We're not the people who make the final decisions.  We are invited to a room and asked questions and the data is collected.  Then we are sent on our way.  The report is not written with us. We are not put in front of the powerful decision makers.  Quite often, the 'consultation' reports are shredded and the powerful people do what they like anyway.  But they can tick a box saying they 'consulted'.

Next, placation.  When autistic people raise concerns about something, someone says sorry.  Someone promises it will change.  An actual start to someone stepping away from their position of power to say something with some humility.  But...is it?  Or do they do the exact same thing again, having said sorry?  If so, that was manipulation, not placation.

Now we're into the bits where autistic people are starting to be respected.  Partnership.  We work with organisations, as part of their team.  Not a powerful part, not a part with the final responsibility, but a part.  A volunteer on the team, named and visible, perhaps.  Maybe even paid a small amount (not as much as other people who aren't autistic, normally).  Enabled in a supportive way, with leaders speaking firmly about respectful behaviour around us.

Then, the next level - delegated power.  We are given Actual Responsibilities.  Not top power, but we're allowed to decide on things, given proper status alongside other junior managers or leaders.  Paid properly.  Enabled properly.  Respected.  Not put into situations where others are allowed to undermine us, and then those with real power say, "Well that just goes to show we shouldn't have any more autistic people working with us, eh?".  That's not delegated power.  That's manipulation.


Then, the top level, proper management power, proper leadership roles.  Fully paid or responsible, fully empowered, fully able to hire, fire, make really huge decisions with others.  Fully trusted, fully enabled, fully respected.

Where, on this list, is the group or organisation you're thinking about?
Where is a person you deal with, on this list?

Where are you, on this list, when you encounter an autistic person?

It's a good list to think about, I find.


Friday, 18 May 2018

Driving Whilst Autistic


I have had some interesting conversations around autism and driving, this week.  It led me to look at some research into this.  It is fair to say that I was, er, surprised by my findings.

Firstly, almost without exception, the 'test subjects' in the research were young men of between 16 and 25.  

Almost no female or other genders.  Thus cutting out almost half of the autistic population from the research.

Almost no adults in their late 20s, or indeed their 30s, 40s, 50s, 60s, 70s or older.  In other words, during all the years when people normally drive, or may learn to drive when older.

Some of the researchers decided it was too much bother to ask the actual autistic young adult drivers, so they asked their parents to fill out the questions instead, I kid you not. 

Other researchers decided that it was a really good plan to test autistic people by putting them in front of three huge flickering screens in a mock-up of a driving position, and do a computerised simulation.  This would be the same as their actual driving skills in natural light on a real road, in a real car, they mused, not knowing anything about autism it seems.

Yet more researchers decided that autistic people were 'bad' because they paid equal attention to objects and people in these computer simulations.  Whereas the 'correct' response was to pay attention to people more than objects, when driving.  Apparently they failed to ask the autistic people why they paid attention in such a way.  After all, if you can just portray us as 'bad', job done?  I might point out that a computer simulation of a person is not the same as a real person, for example.

And some of the researchers seemingly ignored recent studies showing that, on the road, in a real car, autistic people were as good or better than the non-autistic ones.  More careful, better understanding of rules, etc.

Talking with autistic drivers who have driven for decades safely and without problems, several have told me that one of the biggest obstacles in learning to drive was the appallingly bad non-autistic instructors.  They simply wouldn't explain things in a clear way, and assumed that the autistic person could interpret and 'fill in the gaps'.  Then, if the autistic person got it wrong, "Well, it's their autism, innit".

Is it?

Like every other sort of person, some autistic people can't drive.  Some autistic people attempt to pass a test and don't.  A few autistic people are not good drivers.  Some autistic people are average drivers.  Some autistic people are excellent drivers.

Just like everyone else, if given the same chance to learn the skills, in fact.

Each autistic driver has to pass a competence test.  It's called the Driving Test.  Same as everyone else.   

Turning to the DVLA, the organisation in the UK who handle driving licenses for people, their website (paraphrased) says "if" someone's autism means they shouldn't drive because it's not safe, then, er, they shouldn't drive.  A strange statement, whichever way we look at it.  

One doesn't become autistic after passing a test.  One is born autistic, and is autistic for life.  So someone who is deemed competent by an examiner is indeed as competent to drive as everyone else who passes their test.    In fact, many autistic drivers show great strengths such as diligence, honesty, carefulness, fairness and accuracy, as well as often having a really good knowledge of cars/maps/road signs etc.  I've had the honour of driving with so many fantastic, very safe autistic drivers, including those within our own family, and observing their skills over decades.  Researchers should try that instead of getting out a computer.

I'd quite like our researchers to do some quality research into autism and driving, because this is important stuff.  Autistic people are rarely able to access public transport in any good way, and for many, the car is freedom, opportunity, a social life, and (vitally) a way to get to work and back.  What we need is really good research that looks at the whole range of autistic people, not just 5% of us.  Research that looks at fair testing of skills, looks at how we can improve the process, ensures that we have more instructors with autism knowledge, and produces better ways to enable people to learn accurate, safe skills.

Analysing a group of teenage lads playing on a computer does not in any way represent a driving research project worthy of the name.    





The picture at the top is a green open top racing car, parked in a warehouse.  

Monday, 7 May 2018

Dear Church. You know I love you. But we need to talk.


Dear beloved church of mine. 

You know I have spent 20 years serving you? As an adviser who has co-written Policy for the Archbishops’ teams? As the main lead on autism for a decade? As a speaker, trainer, prayer partner, friend?

You see, I’m autistic. And, well, there’s no easy way to say this. Your words can hurt. They wound. They injure. They humiliate. They dehumanise.

I know. I know you don’t mean to do these things. I know you want us all to thrive. But, well, let me explain.

Yesterday, I opened a new book by a senior church figure. Being Human. Published this year by SPCK, a charity whom I have supported for a time and who do fabulous work with me.  The book is written by a fine mind, a person well known for their kindness.

Yet..well, walk with me through this extract...


“I find some of the most suggestive, creative and challenging insights come from looking at how people work with those living with autistic conditions..or dementia..It’s when we see malfunction or challenge of this nature that we begin to see also what we take for granted...what we mean by consciousness...”

Turning to the blog of another senior figure, we read him quoting from a text, “..The autistic or Down’s Syndrome child, the derelict, the wretched or broken man or woman, the homeless, the diseased or mentally ill...to be able to see in them not only something of worth, but indeed something potentially godlike, to be cherished and adored, is the rarest and most enobling unrealistic capacity ever bred in human souls.”

So, malfunction...or an act of unrealistic nobility to see that of God in me.

Well, my loved friends, that hurts.

You may not mean it to.   

But I want you to walk with me.  The me that is a human like you.  With feelings like you. Loved by God like you. Cherished by him like you. Bringing our whole selves to his service, like you.  As leaders, as prayer partners, as friends, as people of honour and integrity. You see, it's endless, the list of negative things we wade through in life. Just endless. Example after example in theological writings, from these fine authors and others, using me and my lived friends and family of all autistic kinds as the examples of the monster, the tragedy.

  When you write of us, could you try to write as you would write of a friend? Could you write of us as a fellow disciple?  Might your words reflect the knowledge that autism never was a lack of humanity, but a misunderstanding of communication and sensory differences? Autistic people are generally kind, caring, courageous, a blessing. But so often placed in great pain and distress through ignorance of our differences. 

Could you perhaps avoid comparing us to inhumanness and brokenness to see how close we match up? It hurts. I am sure it hurts all the others in those awful lists too.

Autistic people yearn to read that we are welcome at that table alongside our loved friends, in all the love and sharing that our faith brings. 

Thank you for reading. 

Sunday, 15 April 2018

“You don’t know what it is like to be an Autism Carer”

I see a lot of my autistic colleagues being told this. I have been told this, often.
It comes from a deep misunderstanding of autism.

I am a parent. I am autistic. I grew up as a young carer to a desperately ill mum, without a shred of support from Church or society. What I say next is not a plea for pity, or a bid for Sainthood. It is simply a list of facts.

It was hard work to battle the systems. Get the right medical help for mum, during times when she was a danger to herself and others around her. That wasn’t evil. It was a medical situation that she could not control.  It was harder work when autistic myself, nonverbal during times of stress and overload. I learned a lot about survival. I learned a lot about love. 

 I had to organise the funerals of my parents whilst I was in my 20s.
I wonder if you can imagine what life was like? I am not alone in this history. I have good friends who are autistic and have been carers almost all their lives,

As a parent, I had to find ways to honour each autistic member of the family. Support each one to be the best they can be. Be there through good times and bad. Find a path through schools. Cope with running a business through two recessions on top of much of this.  Cope with very tough cancer treatment in 2011-12. Put up with some business and Church people making it tougher still.

I am still here.
I am still here to consider the lack of support for me as an autistic carer, and parent. Autistic parents aren’t supposed to exist, it seems. But we do. Thousands of us, caring. 
I am still here to wake up to a bunch of people telling autistic parents like me that we don’t know what it’s like to be a carer. Many good people out there of course. But some...well, where does that myth come from?

It’s simply wrong.

We know.

And, we continue to love. Continue to hope. Continue to offer our knowledge and our advice about autism. Continue to support those around us. Continue to tell people to find and hear all sorts of autistic people. Continue to campaign for equality. For justice. For the right to do the things others can do. Continue to ask for the support that all need. 

It would be great if we got support also.

We need fewer people saying, ‘...those dreadful autistic people..’ , and more saying, ‘How can we work together to bring about a good result for us all?’

Thank you for listening.

Saturday, 7 April 2018

Autism Mythbusting: Employment.


"Only 16% of autistic people are employed".  Quite often we see that said or written, in the UK.

Well, no.  

Certainly a survey of around 2000 autistic people was done by a large charity,  They found some 32% were employed, but 16% full time.  That may be the source of the "16%" myth.

"But Ann, if it's a proper survey, it's not a myth", I can imagine some saying.

Let me explain...

You see, we have to ask who answered that survey.  People involved in some way with a support charity, thus more likely to be not-coping-too-well.


We know that many autistic adults have yet to be diagnosed.
We know that many autistic adults haven't a clue that they are indeed autistic.

We know that many other autistic adults do not wish for a diagnosis, because they are afraid of prejudice.  Nor do they wish to disclose that they may be autistic, or disclose a self-identification as autistic.  In their view, they have found a niche, a way of being, that means they do not need to do so. A fair point of view.

We know that many autistic people ask for a diagnosis and are told 'no'.  Sometimes for cost reasons.  Sometimes because of those other myths... that autistic people are all male, all geeky, all youngish, fascinated with maths and science or flapping in a corner or doing card memorisation tricks.  All white.  All of the same culture. All of whom allegedly couldn't care less about others.   A host of myths.

Generalising:


We miss the ones who are not male.
We miss the ones who are extravert.

We miss the ones who are creative, kind, generous.
We miss the People of Colour.

We miss the people who are older.
We miss the myriad autistic people who are already right here, next to us, in society.  Already doing a great job (though often struggling to stay employed, as the socialising is exhausting and bewildering, and their place of employment may be sensory hell for them).
Already being honest.

Already being dedicated.
Already being a huge asset to the places in which they work.
Maybe already being the employer.  I am.  I have employed people for nearly three decades.  Some autistic. Some not.  Fantastic experience.

So, who answered that survey?

It cannot possibly be representative of all the autistic people in the UK.  Not so much the fault of the researchers.  More a reality of a system that forces autistic people to hide, because of the horrifying myths about us.

We are also guided by research from abroad:

https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-018-1645-7  A survey from a European country.  65% employed.


https://content.iospress.com/articles/work/wor2492 A survey from the US.  61% employed.

...and informal polls of autistic people done in the UK on social media.  Here's one by Shona on Twitter. 51% employed.

What this does not capture, of course, is what the non-employed autistic people are doing.

Many autistic people I know are volunteers for organisations, doing fantastic community work.

Many are at home with their children, doing a wonderful job bringing up those fine young people. 

Quite a few are in full time or part time education, studying for qualifications including higher degrees.  Some are unpaid researchers, thanks to a very odd way of funding such work.

Some are unable to work because of their health situations and other situations, including a severe lack of clue about autism by some job centres and some employers.  Good to see work happening to improve this.   Often, they are then offering peer support to others online.

Very, very few autistic people sit around being financial and social 'burdens'.  I hate that word.  I really do.  It entirely fails to capture the humanity and worth of people of all kinds.



If you go to work and are expected to be non-autistic when you walk through the door, that's not good.  

If you walk in and cannot see or hear (when the solutions to that are simple, cheap and hurt no-one else), you can't do your job.  

If you go into the office and are met with a barrage of hostility every day, because of myths and misunderstandings (or just plain bullying) you can't remain employed.  

Above, how I see an office environment under fluorescent lighting.  One example.  Not handy. Dazzling colour. Bewildering flooring. Blinding.  Exhausting. Such lighting flickers like a strobe light, too..  A change of lighting system for my bit of the office solves it, and costs almost nothing (as there's energy savings too). Or I can work from home for a lot of things.  

I work full time, running a national company.  My sensory needs are major.  It was easy to solve.  It will be easy for most others to solve, too.  The photo at the top is my office.  Parents, I was non-verbal for years, typically autistic.  Want your young person to be doing similar?  Believe it can happen.  

There's ways round the obstacles, but people have to know the obstacles are there.  Then take them seriously.  Autism buildings access is important, and in the UK, a requirement under the Equality Act, as well as being good news for your business.  It's 1 in 30 of the people around you.  (No, really).  Including your customers.
I'm going to be clear that I believe every single autistic person is a person of worth, a person deserving a good life, whether they are able to work or not.  Each of equal value to society.

In this blog, I'm focusing on the autistic people who are prevented from working, when they would like that opportunity.  Or who are stuck in menial jobs because of the lack of ways to progress.  Or who try their hardest to find work, and are prevented by that huge obstacle, the social-skills-interview.  [Are you an employer? No need to interview autistic people at all.  Just do a work experience test, properly thought through.  Help exists to enable this, if unsure.]

Instead of blaming 'the autism' for the employment situation, we need a better set of strategies. 

We need acknowledgement that our statistics are not good enough.  Mostly they terrify the heck out of parents, who think their child has almost no chance of a job.  That's simply not true.  It is true that some have profound support needs that mean they may not do paid work.  I and many others have worked hard for decades to help ensure that there is good support for such situations, for the person and for those providing the supports.  I am a parent to an autistic son.  I know what sort of a struggle the world gives parents.

We need a world where it's OK to say, "I am autistic" without the threat of someone removing your job in ever-so-subtle-ways.  And some not so subtle.
We need a world where people see the word '"autistic" and think, (for example) "Oh great - someone who is honest, dedicated, creative, hard working, can see different possibilities that we might miss.  I can ask them what they need for sensory environment.  That's doable.  I can skill my  workforce to respect their different way of communicating and socialising. There's good training for that at a fair price, from actually-autistic trainers. This is pretty easy.  My company benefits from having minds that can see the picture differently.  More profit, better products, better outcomes."

Then, we will have a situation that is better for everyone.  This isn't an act of charity.  Autistic members of staff are a brilliant thing to have, when enabled.  You probably already have some...have you asked?  Have you made it OK to disclose?

Get good training in autism. Look for training companies run by, and using, autistic trainers. Or companies run by allies who bring in paid autistic people to help, who showcase autistic work.  Then you know you have autism-positive, accurate materials, not myths.

Put up positive autism-acceptance messages about your company or charity.  Make sure we know it's OK to work with you.      

Thank you for listening. 



Saturday, 24 March 2018

Social Worker CPD Training and Autism


For a good few years now, I and other autistic professionals have been training Social Workers.  Sometimes, trainees, but more often ones who have been doing the job for a very long time.  Some, in very senior roles.

One recent session, part of a series, saw around 40 Social Workers trained.  As usual, some of senior rank amongst them.  The team covered autism training for a day, so around six hours of updating people on the latest thinking.  When we do the training, we're talking about the research, the brain scans, practical examples, exercises.  This isn't a random autistic person standing up to talk about their childhood as a sort of 'zoo exhibit'.    

At the end of it, there was a queue of Social Workers coming up to us, to say, "Thank you, that was brillliant" and "That was amongst the best training we've ever had", etc.  One in particular said, "I had no idea.  None.  I've been filling out the assessment forms for years and until this session, I did not know what I was doing.  I would have put 'not applicable' through most of it".  Another, "I wouldn't have known you were autistic.  I was so focused on autistic people in care homes  - you know with multiple disabilities or learning disabilities as well.  I didn't know how much knowledge I was missing on autism."

Recalling prior sessions, these are common comments.  

The picture at the top shows 100 dots.  Let us assume those are 100 autistic people.  Two of the dots are a different colour.  That's the proportion of how many autistic people are in care homes in the country.  The rest of us are expected to cope in society.  Whether by living collaboratively with family, or on our own.  And, to our credit, many of us find ways to do that, with the mutual support of one another.

We are 98 out of those 100, and the focus of Social Work training has most often been the other two percent.  The other two percent are important, of course, also.

This presents a considerable problem for safeguarding, in particular. If you are trained to believe that autistic people are in care homes or supported living, rocking and flapping, barely able to hold a crayon, barely able to add two and two together....and you see someone like me...well, what are you going to think?  You'll think there's nothing to consider, perhaps.  That it's a trivial thing for us to live in a society where there are predators, and where one has to negotiate with fellow humans for just about everything - from friendship to getting a tradesperson round to the house.

Let's look again at the statistics around autism.  We know that 80% of autistic people are defrauded by people they thought were friends.  We know that 30% of autistic women disclose having been raped.  The sensory situation for us is major, and the reality is that we are often blinded and deafened by the sensory world around us.  Unable to see who is a predator.  80% of autistic people are sometimes non-verbal during stressful situations, so completely unable to speak up for ourselves in words during those moments.  Perhaps unable to scream or shout for help.  

Look up the words Sensory Autism Vimeo online and watch the two minute film, with the sound turned up.  That's a reality for so many autistic people.  It's not a manipulative or nasty behaviour.  It's pain.

I get a certain number of Social Worker-trained individuals who do  not realise that the entire landscape of autism understanding has changed in the last few years.  If their knowledge is not up to date, (from actually-autistic specialists or teams where autistic people are equally valued as professionals)  they cannot possibly be in a position to offer safeguarding expertise around autism. 


I see them wading into situations where they are conversing with autistic people, and completely misunderstand the dynamic.  They assume that the autistic person is communicating 'rudely' and so go on the offensive with them.  They assume that the escalation that results means that they need to be more firm, exert more power.  They are misreading the whole situation, because of their lack of knowledge.  I see autistic people pushed into meltdown, shutdown and general not-coping by this escalation of ignorance.  Then, we find people being Sectioned, or put into increasingly expensive care settings.  Few situations were necessary.  They are caused by the ignorance of others, in many cases.

I am very thankful to be working with groups across the country, and with the best of minds in the academic and research fields.  People like me are brought in to assess academic materials for accuracy and appropriate language.  We are hired to provide expertise to Psychologists, Psychiatrists and similar professionals.  This is no longer a landscape of 'we visit autistic people in a care home and do things to them'.  This is a collaborative partnership between equals.   Am I something special?  No, I'm one of many professionals doing such work, whilst preparing for the Masters degree. Be aware that we exist, and in increasing numbers.  Make contact with such people.  

I am extremely glad of that radical change in thinking over the last years, and the resulting improvements in autistic lives.  The suicide and self-harm rates for autism are stratospheric because so few people have been trained on the communication and culture of autism, or the basic information about sensory processing for us. 

Be allies.  Find out.

Thank you for reading.

Friday, 23 March 2018

When Being Positive Becomes A Weapon


"Cheer up, love, it may never happen".

Had that experience, walking down the street?  A random stranger decides you need to be happy, even if that isn't your emotion right now?  It might have started from a place of caring about you, but ...does that work?  No, it doesn't.  They have no idea what has happened in your life already.


For many autistic people, not being heard is a constant thing in our lives.  Sometimes literally, when we are non-verbal.   Sometimes it's about not being given the chance to speak.  Sometimes it's about being deliberately silenced.

It's not just about spoken or written words, though.  Our emotions are also in constant danger of being silenced.  We are so often told to perform, to act positive, to smile, to never criticise something worrying or bad.  

The photo at the top shows someone holding up a piece of paper in front of their face.  On it, a smiley face has been drawn.  But what is their real emotion?  Are they actually sad, or angry?

One of my favourite pieces of work is on Tone Policing, at https://everydayfeminism.com/2015/12/tone-policing-and-privilege/  With a warning for some strong language and content, which are used as part of the example.  In it, it shows all sorts of things that people get told.  That they should be nicer.  That people won't help them because they are sad, or upset.  That they won't get help unless they are happy enough.  And, a reality, that often it's about someone else who wants to be happy and expects us to be their personal answer to that, at our cost.

So many of us have had a lifetime of being told to be happy.  Having to put a false smile on our faces in order to please others.

Being positive sounds like a great thing, doesn't it.  And, when it's genuine, of course it is.  Finding joy in life is a journey for us all, and learning to look after ourselves is a vital skill.

But some people from some organisations use positivity as a weapon.

"Person A isn't a positive person.  Let's ignore them and leave them out, instead of listening to their concerns".
"If you raise any concerns about my rude or selfish behaviour, you're just not being positive.  It is you who is the problem."

 "If my alliance with an anti-autistic organisation is causing you difficulties, you just need a better attitude.  If we're all positive together, good things will happen".


There's lots of reasons to be positive as we go through life, when genuinely good things happen.  And, of course, some people use negativity as a weapon, deliberately undermining others with it, so being falsely negative is also not good.

But, goodness me, we need to say to autistic people, "It is OK to be sad" and "It is OK to express concern" and "It is OK to be angry with this situation and want it to change".  Especially when we have a population who are so regularly silenced.

If we are serious about the mental and emotional health of autistic individuals, let's not silence their true voices, or their true emotions.  Let's listen, and start from where they are.

Thank you for listening. 

Wednesday, 21 March 2018

Safeguarding and Church - An Informal Guide

 
Are you in a church or church group, and responsible for the safeguarding of children, or adults who may be vulnerable?  This is an informal guide, not authorised safeguarding material.  It is here to help you think, and plan.  I am a national adviser on this subject and have been for a very long time now.  I'm also autistic.

Are you aware that 1 in 30 of the children, young people and adults are autistic?

Are you aware that autism is a brain design, from birth, that stays with people for life?

Are you aware that it's not a mental health condition? (Although after a lifetime of experiencing loneliness and hatred, many develop anxiety or depression).   That it's as likely to be females, for example?  That it's any IQ, any background?  That it is usually an invisible thing, so you cannot spot an autistic person by just looking?

Generalising:


Are you aware that it is a different communication system and culture to that of non-autistic people?

Autistic people may not give eye contact.  They can either hear, or look, but not both.   It is not a sign of guilt or unwillingness to engage.

Some autistic people find it difficult to identify faces, but can be expert at identifying people from mannerisms, build, smell, voice, hairstyle, clothing, etc.

Are you aware that most autistic people process sound, light, perfume, texture and taste differently to others?  They may take in too much sensory information and become totally overwhelmed.  When that happens, they may have a brain event, similar in principle to a sort of epilepsy.  During that, they may behave erratically for a short time, or may 'shut down'  Recovery somewhere quiet is needed for a while.  It's not a deliberate piece of nastiness or refusal to engage.  They may need an environment that is away from flickering overhead bright lighting and background noise, or otherwise may not be able to speak to give evidence.

Are you aware that there is no link to greater violence, nastiness or other antisocial behaviour, and that there is usually a huge desire to act in moral and fair ways?  Many have strengths of honesty, integrity, diligence, passionate focus on specialist areas, deep caring for others.  Whether verbal or not.

Let's look briefly at the communication difficulties that an autistic young person may have in disclosing to a person in church:


a) Some may not use spoken language, but may rely on technology to 'speak' for them.  Do we enable this?  Do we understand that 8 out of 10 autistic people may struggle to speak in stressful situations, so may need allowances for this.


b) They may have delayed processing of emotions and facts.  So, may not report for some time.  This can be misinterpreted as 'not very serious' or 'not to be taken seriously'.     It's vital to give people enough time to process what has happened.

c) Their faces may not display the matching emotion to that felt, so someone may appear happy when they are desperately afraid, or may appear angry when they are desperately sad.  It is vital not to misinterpret this.

d) Autistic people need certainty, and will ask questions until they obtain certainty.  If you're not certain of a set of answers, say so.  If a timescale is vague, give an outline of that vagueness, e.g. "I do not know but I will check with person X...and contact you again by date Y to let you know the latest, if anything".  Not, "I don't know.  I'll let you know when I find out.".  Having some certainty of further contact may be vital.

e) Autistic people will be persistent.  This is culturally expected in the autistic communities and is not an attempt at being harassing.

f) Autistic people will tend to give too much information, in enormous detail, possibly as one monologue that has to be completed.  This is culturally expected in the autistic communities also, and is not a sign of 'not caring about the workload of the clergy' etc.

g) 70% of autistic women report unwanted sexual contact.  30% report rape.  We know from the recent Inquiry into the CofE safeguarding situation that churches have not been safe places.  There will be more cases where autistic individuals have been targets.

I want us to reflect on those statistics.  The pain involved.  The humiliation.  The fear.  So few go forward to Court, because the barriers are too great.


h) 30% of autistic people are part of the LGBTQ communities, and may be terrified of disclosing that also, in some churches.  If they have been targeted, there may thus be double barriers to justice.

Some autistic people may not understand what is normal in a relationship, and may be very na├»ve about it.  This can make them ideal 'prey' for a predator, telling them that 'this is normal', or 'this means I care about you' or 'God wanted me to do this'.


Autistic people may be terrified of disclosing, or giving evidence, because they have so often not been believed. "You must have imagined it...you must have misunderstood...you must have been having a bad day and it just seemed bad...they're such a nice person and obviously they wouldn't do that to you...".  That, and the myths about how autistic people are 'dangerous' have been a huge barrier.  It has been so easy for any predator to say, "We all know that autistic people are nasty.  They just want to hurt me.  I'm the victim here."

If we do not have a system that understands autism, we are failing the 2 million autistic people in the country.  We are failing them when they edge towards faith communities.  They are as likely to want to be members of a worshipping community as anyone else.

Who in your church knows about autism?
Who are you getting your information from?

Are you getting information directly from the autistic professionals, who are experienced in teaching churches how to ensure safety?
Or are you getting it from a group of people who met an autistic person once and did a day's course in it? [From a recent example...]

Who is delivering your training?  Is it done with autistic people, and is it designed by autistic people?  What input did autistic people have?  Have they checked it and said it is accurate?

I've seen a lot of dreadful 'training' happening in churches, from people who have ended up describing us in appalling ways that have made it harder to disclose, not easier.

Please, get some good advice.

The link at the bottom is a good starting point.  The Welcoming guidelines for the Church of England.  Although of course autistic people are already in churches, some of them as Clergy, musicians, bellringers, craftspeople, artists, poets, authors, prayer partners, Server, Readers...in fact all the roles.  The guide is one I wrote for the Church of England.  I don't work for the CofE now, but still help friends in there as an external adviser.  Inclusive Church have some contacts for autism as well.  Ask for Autism Oxford to do some training, perhaps, or any other good group that includes and respects autistic voices.

Too many autistic people have to live with what happened to them.  They need to know who to talk to, or who to write to, in safety.  Do they know?

They're relying on your help.




https://www.oxford.anglican.org/wp-content/uploads/2013/01/autism_guidelines.pdf


The picture at the top is one I took in a church.  It shows Mary, the mother of Jesus, with the baby Jesus in her arms.  She is sitting down, looking at him with love.  A shaft of light is falling on him.

For me, it says everything about the care we need to give to one another, all part of God's creation.