Sunday, 20 December 2015

Christmas for an Autistic Mum





Some days I think how lucky we are that the three of us are autistic, in our family.
It means Christmas is pretty stress-free.  At least on the day itself.


For me, as an autistic mum, Christmas has always had more challenges than I could name.  


1) Making sure family members with 'executive function' issues are well organised.  Helping them plan ahead. Executive function is where planning how to do a task goes wrong.  Timings, actions, sequences.  It needs a lot of structure and rules. A top tip for those who struggle with understanding time has been to buy really easy-to-read clocks and watches, and help people work out 15 minute chunks of time.  Tasks that seemed hugely daunting are now 'just one chunk' or 'only two chunks'.





2) Trying to guess what people need for Christmas.  Apparently not everyone appreciates an Ordnance Survey map.  This was a surprise to me, as a child. 
As an adult, I've put maximum thought into noticing what people wear.  What colours they prefer. What things they have in their homes.  Anything that is a hint or tip.   And sometimes I just ask them what they'd like.  OK, it's not a surprise that way.  But me buying the wrong thing won't make their Christmas better.  Autistic people are not keen on surprises (generalising throughout).  So understanding that others really like not having a clue what's happening...well, that's a mystery.  But if that's what makes them happy, that's good.


3) Coping with the Christmas disruption.  Everything changes.  There's flashing lights on houses and on Christmas trees (sensory eek for those of us with the photosensitive sort).  There's changes of routine.  There's bright colours everywhere (which I love, thankfully).  There's huge social expectations of extra greetings of Just The Right Sort.  For creatures of habit and rules, this is all very scary.  We try to minimise time spent near dreadful 'energy saver' compact fluorescent bulbs in many houses now, as well as ones in shops.  Ear plugs/defenders, and blue-light-reducing sunglasses can help.  Good timetables also help.

4) Keeping everyone's brains at 'less than superheat' level.  Remember, autism is not a behavioural condition or a mental health condition.  It's a different brain design.  The wiring inside senses too much info from the world around us, and (from what we see on scans now) literally overheats, if we're not careful.  That's why we suddenly 'switch off', or leave, or do something baffling for a short time - pain/electric stuff going on inside our brains.  So, if there's a social event, I need to think how much time to allocate before and afterwards to brain cooling, so we can go see our lovely friends. Y'see, we do love our friends and family, very much.  Seeing them is a joy.  We're just not built to do it for long, using their forms of communication.  Eye contact, body language, extreme chatter in noisy places with music playing and everyone wearing perfumes and aftershaves...yikes.    I need to work out all the emergency plans in case the calculations for brain-overheat-levels are a bit wrong.  [It's not an exact science. If one of the family is feeling ill, they can cope with less.  If something that's a sudden sensory overload happens, that adds to brain-heat.  If there's a social eek, that's brain-heat as well]

5) Making time to relax and enjoy things.  That's so hard, sometimes.  It helps me to be able to use technology.  It may look antisocial, but it's my coping strategy.  The Christmas dinner can be very stressful for some.  We make it predictable, and it's OK for people to leave the table for a while if they are overloaded with sensory or social stuff.

6) Remembering to explain that I'm really not being rude if I have to say no to an event.  Or leave early.  Or go elsewhere for a while during it.  Or if I don't recognise someone I know (faceblindess is not handy...).  Or fail to make the Right Eye Contact.  (Honestly, good people, would you ask a Blind friend to make the right eye contact?  It's painful for us to do it, because our brains wire it into the wrong bit of the brain.  It's not us being rude).  

7) Remembering to take autism alert card with me.  Just in case I need it.

8) Home shopping.  Hurrah!!  Not a luxury for people like me who cannot access a supermarket without being in pain and exhaustion from the sensory hell.  Hurrah for supermarkets now offering 'autism friendly' shopping times.  Others shops could do the same.



9)  Rehearsing what to say if someone gives me something baffling.  Most of my friends are brilliant at buying things I love.  Occasionally, someone newer to me will give me something that is accidentally-scary.  I must remember not to be scared...not to show that I'm scared...and to say the right thanks.   Oh, and also say something nice about the person and what they are wearing, if they have dressed up for an occasion. I think it, but sometimes forget to say it.  Communication disability/difference, not 'couldn't care less'. Safe subjects to admire are important.  Remember to teach young people to compliment the colour of a nice scarf or a piece of jewellery, or similar.  And to avoid compliments about more personal areas of the body.

10) Most important, and through all of the above, remembering that - for me - this is about celebrating the birth of Jesus.  My faith is so important to me.  It's why I talk about it a lot.  If others have no faith, or a different faith, that's fine.  I'm not a 'You must believe in Jesus or else!' sort of person.   But Christmas....it's about love.  And knowing that we are loved, just as we are, by God and Jesus means more than I can rightly say.

Very good to be working with so many churches and other faith groups across the world, explaining autistic worship and prayer.  Being able to celebrate this day is as important for autistic Christians as any other Christian.  And, we are as likely to be Christian as anyone else.  Jesus had an autistic friend, Nicodemus.  That is something absolutely brilliant.  He was right there, alongside Jesus, chatting to him, learning about our faith.  Looking for autism info your church?  Search online for the words Welcoming autism church.  Those should take you to the welcoming guidelines for churches.

Whatever your own faith, or indeed if you are celebrating any other event, these sorts of tips above can be a starting point.  Each family, and each person, will have their own best way of celebrating.  Whether it is quietly or noisily, whether in small groups or big gatherings.

I wish you all a wonderful celebration, whatever yours might be.


Thursday, 17 December 2015

Autism: Denials and 'Gaslighting'

One of the most painful experiences that most autistic people endure is not being believed.  A good number of people do not want to listen to what we say. Or, it may benefit some of them to get a group to distrust our witness to things.  Some say, "Oh, they're always making things up". "They must be imagining it", or similar.   

Others go further, and start telling us that we don't feel how we feel, and we haven't experienced what we have experienced.  This is known as 'gaslighting', a word taken from the old play, "Gas light".  In this, a husband would dim the lights in the house, and tell his wife that in fact there was nothing wrong with the lighting levels.  Done regularly with all sorts of things in the household, she came to believe that she was quite mad.

Autism is not a strange sort of mental health condition.  We do not just imagine things.  In fact, imagining things in any way that influences others is often one of our greatest difficulties.

If you spend decades telling an autistic person that they have no idea what their needs are...that they aren't really communicating...that their behaviour doesn't mean what they think it means...that the things that they need are not needed.... that they are mistaken about what's happened to them..... then we do end up thinking we've totally 'lost the plot'.  People so often remove our entire reality and replace it with their own version of it.  Ours becomes lost.  Our voices become irrelevant.  Our experiences discounted.

We need to stop doing this stuff to autistic folk.

If only autistic folk were exaggerating about what we endure.  As we know 70% of autistic women endure sexual assault.  30% endure rape.  80% endure extensive bullying.  Most autistic people are regularly defrauded and stolen-from by people we thought of as our friends.  We are two and a half times more likely to die young than other people, because of the terrible difficulties we have accessing good healthcare.   And because of the relentless loneliness and stress that we are made to endure.   We don't need to make this stuff up. We live with it as a reality that most others will never have to face.  Most autistic folk I know underexaggerate hugely about the dreadful things they endure.

Talking since with national and international autistic colleagues, so many of us have experienced this kind of stuff.  The notion that we are nothing but 'attention seekers' or 'people who invent things'.   The total rewriting of our personal reality to fit the needs of  some non-autistic people.   

I shall generalise. Autistic people are supremely honest.  Lying is the thing we mostly find the hardest of all.   And attention on us is a very scary thing.  Most of us would rather hide under a table than get the attention of a group, because a group's attention causes literal brain overheating and pain.

Trying to reach out online is such a hard thing to do.  Trying to befriend people can go so very wrong, so very fast.  It takes courage to blog, and to tweet.  I'd rather not do it.  But then, how do we get to hear autistic voices, if all our voices are silenced or disbelieved?

When I go to a place that says it offers love and acceptance, and find cold indifference, or 'gaslighting' there, instead of friendship and caring, I weep.  Not so much for me.  But for our autistic children.  Because I want this world to be a safe one for them.  Now and always.  This Christmas and all the Christmases and other wonderful faith festivals to come.

Learn about autism.  It's a sensory and social processing difference, caused by genuinely different brain wiring. 

Be allies of your autistic friends and colleagues.  Help us be heard.







Saturday, 12 December 2015

Positive Behaviour Support is Applied Behaviour Analysis with add ons

https://www.youtube.com/watch?v=epjud2Of610


Great marketing. 
[summarised]...."Got an autistic person in your life?  Use this "positive behaviour support" thing.  By using it, you teach the person how to cope better.  In positive, relationship-forming ways."

Doesn't that sound great.
Or is it?

Well, positive behaviour support is another name for Applied Behaviour Analysis, with a few add-ons. That video at the top makes it clear that this is what it is.

It starts with the assumption that autistic people display "challenging behaviour", because we can't think of a good way to simply ask for things.

This is not true.

That's a bit of a problem, isn't it, when a whole behaviour programme is designed to address that particular situation.

Suppose I'm in a café.  Here is my experience of being in that café.  Genuinely deafening, genuinely painful.  https://vimeo.com/52193530   Two minutes.  Needs sound.  Turn the sound up to maximum. 



In that setting, my brain is literally overheating, internally. The pain is real and physical.

OK, watched the two minutes?   Is the child just in need of a better way to cope?  Suppose we took the child's favourite things away from them, and bribed the child with them so they stayed in the café and behaved nicely? The only way they get those favourite things is to do as they are told.  Endure the pain, little Jonny.  Endure the sensory hell, little Jonny.  Behave more nicely, or you don't get the only thing that allows you to cope at all....your favourite things.  After all, we are not punishing the child (directly).  (Just coercing them to endure pain in a really non-confrontational way).

And everyone is so nice.  Endlessly nice.  After all, it's a really Nice behaviour support plan.

Or is it.

Actually, little Jonny is in a lot of pain.  If we want to stop pain, we take the source of the pain away.  We do not bribe the child to put up with the pain.



I do hope that is more clear.   It's not challenging behaviour.  It's distress behaviour.  Be a good carer/parent and stop putting your young person in pain.  Learn about autism instead.




Tuesday, 8 December 2015

Mythbuster: Autism is not Selfishness

One of the myths about autism is that we are selfish.

Oddly, that is not a part of the diagnostic assessment, and neither is it true.


Unfortunately, if a person is nasty, selfish or otherwise awful, a good few people decided that such a person 'must be autistic'.  Even worse, a few professionals in the industry didn't understand autism properly, and fell into the trap of diagnosing people based on how awful their personalities were.  Was someone nasty?  Gee, must be autistic.  Well, no.


Autism is nothing to do with nasty or selfish personality.  I cannot stress this enough.
Autistic people are no more likely to be nasty or selfish than anyone else is.  Being nasty or selfish is a personality trait.  Autism is not a personality trait.


I appreciate that there are going to be a few people out there in the world who say, "...but Ann, I know an autistic person and they definitely are selfish!".  

This could be for one of four reasons.
a) No, they are not autistic.  Sometimes people just assume they are, because they are nasty.
b) They may have been misdiagnosed as autistic, but actually have a personality disorder.  It can happen. 
c) The person may indeed be autistic and selfish, but the autism is not causing the selfishness.  They simply are selfish.

d) They are not being selfish.  They have misunderstood what you needed, because you weren't clear about it.  We need clear instructions.  Using 'common sense' is not something we are able to do in the same ways as others.  If you need us to do X, say so.  That's how it works.  That's a genuine difference, because of a genuine brain wiring difference.  Me, I hate causing pain or sadness.  Like most autistic people, I feel the pain of others very intensely, and will do my utmost to help.  But I cannot see if someone is sad.  Literally.  I cannot see faces clearly.  So telling me I'm selfish for not noticing sadness would be like striding up to a Blind friend and accusing them of selfishness for not noticing the sadness on your face.  You wouldn't do that.  Don't do it with autism.

So, those are the available scenarios.

Autism is a sensory processing and social information processing condition.  We see/hear too much information all at once, and it causes a backlog.  Trying to process it means that our brain wiring can overheat, quite literally.  Then we need it to cool down.  None of this causes deliberate nastiness to others.  Because we are managing that brain temperature, routine and rules and structure are hugely important to us.  If we are in too 'overheating' a situation for too long, there is real pain and real brain shutdown for us.  It's not an attitude problem.

I know just short of 300 autistic people as colleagues, friends and family members.  None of them has behaved selfishly towards me.  I've been supported through ill health, cheered, entertained, and generally loved by them.  In turn, I've done my utmost to support, cherish and care for the people around me.  Autistic folk so often go out of our way to talk in the language of other people, not our own.  Go to places that we find painful because we care about the needs of the person we are with.  Do things that cause us harm, because it's important to someone else.  For too long, we have had any failure to cope with the pain and fear described as 'selfishness'.  This is not OK.  We are so often utterly exhausted by our efforts to try to adapt to the strange and myriad demands of non-autistic folk around us.


Do please beware of people who claim they are experts on autistic people, because they were 'married to a selfish man', or similar.  If that is their view of autism, usually what they know about actual autism could fit onto the back of a very small postage stamp.  Learn about it from autistic adults, who can tell you why things happen...and help you to understand the wonderful, honest, loyal and caring autistic folk around you.  All one million of us in the UK.


Sunday, 6 December 2015

"But you are nothing like Child X - You don't have Real Autism"

Any autistic adult gets this a lot.
The narrative, summarised, is this:
"It's all very well Ann talking about all the strengths of autism, but that is because she is Nothing Like My Child/Nephew/Pupil.  My child is Properly Autistic.  Angry, aggressive, obsessed. We haven't slept in years.  We are trapped in our home.  I fear for the future".

And, at that point, others in the room nod, because someone who has a child must of course know far far more than the hundreds of thousands of autistic adults.  Or do they?

You see, I have an autistic son.  I'm autistic.  My husband is autistic.  My work colleagues in various places are autistic.  My fellow trainers are autistic.  Many of my best friends are autistic, and have autistic children also.  I've worked in autism for more than 20 years. I couldn't use speech for communication until I was past the age of 10.  I couldn't understand what people were until I was 10.  Our lovely son was very lively indeed.  An escaper of epic proportions who was very physical and whose strength defied belief.  I was the parent racing after him to stop him launching himself in front of passing lorries, and apologising to other parents, and wondering if I was going to get any sleep.



You know what?  If I had stopped at that point - and said, "Gosh, autism is terrible - this is a disaster", I'd have been totally wrong.


We grow up, you see. 
He's now a skilled respite care worker and trainer on autism, having done almost two years in a specialist autism school after gaining a degree in psychology & counselling.   He is gentle, considerate and caring.  We are immensely proud of him.

I learned to talk and communicate, and went on to run a national company.  I can't live entirely independently, but I work in collaboration with others and have a lovely life.  Independence wasn't the end goal, and I didn't want it to be.

And so it is with nearly all the others.  Autistic friends who are wonderful clergy team members, pastoral care workers, engineers, scientists, teachers, nurses...nothing is any more impossible than it is for other people.

Given a chance, and people who do not 'catastrophise' us, this is what happens.  Not to all, no. Some have multiple disabilities, which makes it harder.   If you have autism plus ADHD, for example, things can get much livelier.  That's the ADHD.    If you are autistic and also have a learning disability, that's double difficulty.  But that's the combination with the learning disability that is the real challenge there, arguably.  

What happens is that either a good few people misunderstand autism - and spend their lives making our lives worse (with terrible results for the whole family).  Or they mistake autism for something else, like ADHD or learning disability or 'oppositional defiant' type conditions.  None of which are autism.  But autism gets the blame for it, because it's always OK to blame autism.

Is it?
No.
It's not OK to blame autism, at all.

Please learn what you're doing wrong, and stop doing it wrong.  That's sobering advice, I know.  But it's true.  I had to do that.  You have to do that too.  Putting us in painful sensory/social situations which we simply cannot handle means that we will indeed have problems.   Think laterally about each situation and learn not to put us in pain. 

Then you won't have a 'problem' child on your hands, and you won't have to 'demonise' or discount the rest of us.

The next time you catch yourself saying, "Oh, that Ann, she doesn't really understand Real Autism", just stop.  Because I do.  That's why I am a professional in this field, working with just under 100 organisations.

Instead of discounting what people like me say, start listening.  Starting learning.  Start getting to know us.  Because we are the future of your child, and you want to know how to get your child from there....to here.  You do, don't you?

 

Saturday, 5 December 2015

Bullying of Autistic People

“Bullying is achieved by projection of the bully's inadequacy onto others, through criticism, exclusion, isolation, etc.
Bullying is sustained by denial, counter-accusation, pretence of victimhood .  It is perpetuated by fear, ignorance, indifference, silence, denial, disbelief, deception, evasion of accountability, tolerance and by reward for the bully.”
(Adapted from the summary by Tim Field, national expert in bullying and prevention).


Research shows us that targets of bullying tend to have highly developed empathy for, and sensitivity of others.  A high degree of perceptiveness.  A strong sense of fair play and reasonableness.  Very non-violent and reluctant to report something, not wanting to get the person into trouble.  A strong forgiving streak and a mature understanding of the need to resolve conflict with dialogue.

Often, targets of bullying have a personal characteristic that is different. Disability, colour, etc.   Autistic people experience extensive bullying and targeting from a few people, because we are different. 



Victim-blaming is how bullies keep their bullying going. Best if they can get others to agree that we are actually the bullies, or that we deserved it.    Or that we are somehow paranoid, inadequate, 'a bit unstable, bless them'.  They will tell people not to get involved.  They will tell others that the person is a nightmare to deal with, and best left alone.  They will fabricate and falsify accounts of what happened, even when real evidence exists.  And, most importantly, they will claim that they are the real victims.

Most people want to believe the bully.  Especially if the person is socially excellent.


Few people want to believe the autistic person.  After all, we have a social communication disability.  Our exact problem is that we do not have 'the gift of the gab' (to use an expression).  The ability to persuade others.  Bullies do.  Guess who wins, in any situation where the listener is unsure about autism?  A good predator with excellent social skills and a clueless audience will win every 'battle for hearts and minds'.

The most simple way to unpick a situation is to look at the outcome.  Who ended up afraid and having to leave?  Who ended up living personally with no money or resources?  Which person has a social communication disability and would struggle to manipulate people, and which other person does not? 

Is anyone pretending that the autistic person is 'a nuisance' or 'deserved it'?  
Is anyone telling you that they 'have extensive experience dealing with autistic people and they can't be trusted'.  Or spreading myths about us being dangerous?

Do please be careful about this.  Logically, it is as untrue as if someone came up to you and said, "I have extensive experience dealing with women, and they can't be trusted - they are so dangerous". 

Never, ever fall for the trick of believing a whole million autistic people in the UK are identical to some single bizarre case they will give you as the example.  (A case where they misunderstood what was happening, most of the time, and thought it was malice of some kind... when it's a epilepsy event happening). Let me put it this way - do you believe all clergy are exactly like some clergyperson in Court on a charge of something?   Or that all people with size nine feet are likely to be mass murderers?  It makes no sense, yes?  It makes no sense for autism either. 





We all have a responsibility to stop the victim-blaming, and to start looking at the bullies.  Find out more.  Get good training.  Review your safeguarding materials and think about how these apply to this honest, caring and often-vulnerable group of people.  


And be prepared to be our allies in a world where predators see too many autistic people as easy targets.  A bully relies on you knowing nothing about autism, in order to spread misinformation about us.  Is your organisation or group getting really good training on the million autistic people in the country from actual autistic experts?  Why not?  Would the group book training on (say) Black issues by booking a load of white people who had once met a Black person?   Would they book a course on how to be a musician from someone who had once seen a musical instrument, or from actual musicians?  Same with autism.  There's a strange myth that if you've invited a Psychologist or Psychiatrist along, that must count.  Well, they are of course splendid people. But autism is not a psychological difficulty, and most of them get no training on autism apart from when they are in our lectures.  The absolute top qualification for autism is 'being autistic'.  And there are many autistic professionals on this topic.  Not random autistic people plucked out of the crowd.  Professionals who earn a living from explaining autism, and who are autistic. Speaking from first hand experience, living with autistic family members, working with autistic colleagues of all kinds at all parts of the spectrum.  Any good non-autistic expert will want to work with us as partners in the course.  Look for respectful co-working from them.   


If you are not getting training from actual autistic folk, think about who is stopping you learning about autism from autistic people themselves.  What is their motive?  That can be a scary set of thoughts to start having about colleagues.  But brace yourself, and go there with that set of thoughts.  Ask them why they are objecting.  See if the reasons are based on myths, or malicious gossip, or maybe both.   Then start getting some real information in there.  There are so many fantastic autistic advocates and trainers working with places now.  Seek them out.  Many wonderful professionals also, who work alongside us in responsible ways.  Tony Attwood is one such.  Always worth getting to his conferences, at which I and the Autism Oxford team speak alongside him.  Find us, talk with us, learn about us as people and friends.

Me, I've had my fair share of bizarre behaviour from a few people.  Many people of course are splendid friends and entirely safe.  But predators know how to spot us, alas.  As if the world is not hard enough for disabled folk, without us being targeted.

I keep loving, and praying, and working for a world where we learn to communicate with autistic people in good ways.  I forgive the people who did what they did.  But I also have to be responsible about how we train people on autism.  Basic safety has to underpin that.  And the world I want is one where no autistic people have to put up with sexual abuse and violence.  Nor with being told it's our fault and our responsibility to be nicer to the bullies. 



Is that the world you want, too?







Monday, 30 November 2015

Psychological Questionnaires and Autism - "Paranoia"

It is a delight to be working with so many colleagues in Psychiatry, Psychology and the related fields.


One of the questions I get from delegates at lectures is whether standard psychological tests work with autistic people.


Depends on the test.


Let's look at the Green et al "Paranoid Thoughts Scale", Part A, as an example.   I note that there has been some limited research into autism and paranoia, using such questions.  The results have left the researchers rather puzzled.  I'm not surprised.


The test subjects are asked to answer questions about the last month of their lives.  For each one, they rate the answer between 1 (never) and 5 (huge amounts of times).  Ideally, a person would have a very low score.


Autistic people are very literal, and will not 'read for context'.  Generalising, of course. But one must start with that in mind.  We also know that 80% of autistic individuals really do experience extensive bullying, and that autistic individuals often do have negative experiences with others.  So a literal answer of 'yes' may be completely accurate information.  The research into these things is there for all to find.


Question 2:  "I often heard people referring to me".   Here's our first real challenge. For example, if I thought about my last month, I'd confidently say that was a yes.  But...I have excellent hearing, and I am a trainer/lecturer.  I really can hear people chatting positively about my work in the training courses and lectures.  So, my response of '4 - often'  is accurate, and reflects reality.  I have not read for context and realised that this question actually meant, "I often heard people talking about me in nasty ways" (or words to that effect).  If asked that, I'd say no.  Not once in the last month.  But I have now scored highly for paranoia, even though not paranoid.


Question 6:  "People have been dropping hints for me".   I don't know what this question means.  Dropping them where?  On the floor?  <visions of people writing handy hints on slips of papers and leaving a trail of them>   This is an expression.   It may mean nothing at all to someone with a more visual form of autism.  I would suggest a rephrasing, but someone will have to tell me what the question means, first.  I'm genuinely baffled.  Remember, I'm a real live autistic person, so you get actual responses.


Question 7:  "I believe that certain people are not what they seemed".  I don't know what this means either.  People are people. They're not going to turn out to be dolphins or bookcases.  The question needs re-phrasing so that most autistic people understand it. 


Question 10:  "I was certain that people have followed me".  Remember how literal we are?  My brain delivered all the information for the last month on this.  The times I've been in queues of traffic with lots of cars following one another, as they do, quite normally.   Or in queues to get lunch, where we all follow one another in the queue.  Sometimes there are people in queues behind me.  Logically, they are following me to the front of the queue to pay for their food, etc.  So the answer is definitely yes.    But that's not what the psychologists are hoping for, one assumes?   The question needs rephrasing. 

Just a few examples.  But one can see how fast a questionnaire can yield useless or misleading results.  We get a lot of autistic women, for example, who are misdiagnosed with schizophrenia.  It's possible to see how that happens. Would I use the GPTS for autism?  No.

Do always check for understanding.  Be prepared to explain and rephrase questions, and then carefully note how that was done.  Think carefully about the answers given.  A lot of autistic people are ending up with wrong diagnoses because we do not understand the evaluation questions.  It can lead to inappropriate medication and very poor outcomes for us. 



Autism, as we know, is not a mental health condition.  It is a global cognitive difference, with areas of ability and difficulty.  It is there for life, and our lives can be vastly improved with better understanding from others, clear instructions for us, and a good sensory environment.  Paranoia is not one of its diagnostic criteria.  If anything, many of us are too trusting and too naïve. 


Our literalism can be a major obstacle to getting the right diagnosis and services.  Do make sure that you get good training in autism and evaluation. 


Friday, 20 November 2015

Flawed research on autism

20 years working in the world of autism.  The honour of working with autistic family, friends, colleagues nationally and internationally.  Wonderful, caring, quirky, dedicated, honest people of the most extraordinary integrity.

But still we have books being marketed which portray us in horrific ways, based on flawed research from the 1990s or early 2000s.


Back then, they had found hardly any autistic adults at all.


There has been no path to diagnosis for most of us until the last few years.  There are huge waiting lists for diagnosis.  We have still not found everyone. We are only just realising that about half of autistic people are female.

In, say, 2003, there were perhaps 1 in 50 autistic people discovered.  The only ones who had been discovered were those whose behaviour was so extraordinary that they had been totally outrageously obvious. Especially the women who were discovered back then.  So extraordinary different from 'normal autism' that they actually got noticed.   Thing is, autism is an invisible disability.  You can't see it.  That's how unremarkable it is, normally.

So, who got diagnosed, back in 2003?  Often people with multiple conditions, often with mental health conditions or personality disorders as well as autism. Perhaps those who weren't autistic at all, but had sociopathic conditions.  It was common back them to imagine that autistic people were incapable of love and empathy.  That's been debunked, thoroughly.  Thus, we found only the outliers, those who were autistic-and-something-else.

An example?  A brilliant idea, back in the early 2000s, of asking mostly people who were in for marriage guidance whether their autistic partner was well behaved.


Guess what.
Some of them sometimes weren't.
That's why they were in marriage guidance counselling.

And still....still, we have people who are reading and believing that such research from that tiny sample in ancient times applies to all autistic people discovered since then.


When that happens, people are not reading about the wonderful gentle people who are the vast majority.  Not the majority of us whose behaviour never gets more extreme than going non-verbal and leaving a room quietly. Not the loving partners, the caring parents, the fab quirky friends.  Just something based on that kind of ancient bit of flawed research.

This is 2015.  We know better.  There are so many who are truly ashamed that they produced such shocking things about the supposed 'normal' behaviour of autistic adults.

All we can do, as autistic responsible gentle, caring individuals is implore people to check what they are offering for sale.  Check whether it matches current research.  And if it does not, please pull it off your shelves.  Real people get hurt with this stuff. They lose their jobs. They lose the trust of others. They live lonely, awful lives. They are pre-judged and pre-hated through people reading this stuff.  It's not OK.  It's really not OK.

Thank you for listening.  And for caring enough to read this blog, and those of so many other exhausted, deeply loving autistic folk.

Thursday, 19 November 2015

Autism and Faceblindness




Most autistic people have difficulty identifying who's who, in some situations.  We process faces differently.  Some of us are 'faceblind'.  We can't tell who's who by looking at their faces.
This is my view of a group of my friends.  I've known them for years.  Their faces are a blur. The part of my brain that looks at faces...and decides who it is....doesn't work well.
I can't even identify my own family.
I work out who's who by looking at hair colour and style.  Spectacles?  Beard?  Build, clothing, way of walking, way of talking.  Context of who they are with and what setting this is.  Anything but faces.
It's really awkward, because most other people know that if you walk straight past someone, it must be because you are deliberately ignoring them.
If you greet a good friend, it is supposed to be with huge enthusiasm.  Raised eyebrows of delight, huge voice tone, probably hugs and kisses.  But we don't. Why?  Because we are not sure it's them.  Plus, our body language doesn't work properly.  Plus, if we make eye contact, it actually stops us hearing you.  Different brain wiring.

So easy for people to misinterpret our anxiety as anger, and our walking-past as rudeness.
No wonder there are so many horrible, dehumanising, 'othering' myths about autistic people.

It really helps to say who you are.  Even if that seems obvious.  Name labels can really help, but only if someone is close enough to read it.  

Otherwise, just stop taking offence at our social communication oops situations.  It's not personal.  It never was.  We're as happy to see our friends as anyone else is.  We care about our friends as much as anyone else does.   But our way of interacting is different.
Be aware of the vulnerability, and aware that we're not trying to be rude.

Sunday, 8 November 2015

Autism and Negative Labels

As a professional autism consultant for more than 20 years, and someone who is also autistic, I get to work with huge numbers of autistic individuals and their families. 


I also get to hear and read a lot about autism.

Most of it is good.  Some of it is not so good.



Many fellow professionals are wonderful.  Positive, enabling, caring, fabulous.


Occasionally, a professional will allege something mysterious.   One of the repeating myths is that 'all autistic people are dangerous'.  Or words to that general effect.  If this myth is going to appear, it tends to be from someone whose job it is to solve really complex situations around autism.  I do think they believe that it is true.  Is it?  No.


Let us look at how this myth happened.
First of all, for more than 20 years, we have had the wrong set of diagnostic questions.  We know this now.  We were missing out perhaps half the autistic population - the girls and women.  The questions were designed to spot the males, or females who thought in a really male way.  Ooops.
So, nearly all the research was focusing on only 50% of autistic people, yes?  No.

We were also not spotting nearly all the autistic people who sat quietly and behaved well.


When a colleague of mine did an autism test of thousands of pupils in schools, they were pretty confident that the teaching staff and specialists had found most of the autistic young people.  They had not.  There were any number of children who were autistic, but they were quiet and well behaved.  No-one had therefore struggled through the system to get a diagnosis for them.  Never found, never researched, never included in studies.  Just sitting there in the classrooms, terrified, learning little, but in a really quiet well behaved way.


So, we missed nearly all the girls...and nearly all the autistic individuals who are quieter and well behaved.  Is that it?  No.

Who else did we miss?  Nearly all the adults.  Pretty much everyone from age 18 up.



What did we have left?  The 'lively boys'.  Those who have autism and whose behaviour was very noticeable indeed. Often also with a learning difficulty, perhaps with oppositional behaviour conditions as well, etc.   And the occasional 'lively' girl who had other conditions as well, often a more severe learning difficulty and others such as severe anxiety, OCD, etc.

On this tiny population of 'lively boys' and occasional 'extreme outlier girls', we have based some 94% of our research on autism.  



It's a bit like basing all research on females by going into a remand centre for women and basing the study just on the women there.

It's no wonder we've misunderstood this mostly lovely, gentle, generous, caring population of people, quietly getting on with our eccentric and baffled lives. 



It's no wonder our passionate interests in topics are misdescribed as 'obsessions'. ["My non-autistic lad kicks a football against a wall for three hours - that's him training to be striker for Man U...whereas your autistic lad does his hobby for three hours and that's him 'being obsessive' and 'needing an intervention to direct him'.  You must be a bad parent.] 


It's no wonder our need for retreat  - so that our brains don't literally overheat in sensory nightmare situations -  is seen as 'defiance'.


It's no wonder our anxiety about pain and very real loneliness is seen as us being 'attention seeking'. 


We have perhaps all been judged as if we are young lads with a variety of very visible and complex distress behaviours.


So, almost everything so far has been based on a tiny group of the entire autistic population.  We're nowhere near researching autism itself as a whole. 


Professionals working on the 'helping parents with particularly difficult situations' stuff?  They see a lot of autistic young people with particularly difficult distress behaviour.   That is exactly why that parent brought that particular child to them.  That child does not represent all autistic people.  But the temptation a very few professionals have is to stand up in front of groups  - and announce that all autistic people of all ages therefore behave in eek ways, because the young people they see in their clinic do.  Well, no.


So, what is a typical autistic person actually like? Instead of bringing to mind that 'lively boy', perhaps imagine a woman, somewhere in her 30s to 60s. We're that quiet organist, that careful artist, that thoughtful scientist, that diligent catering person.  We're the craftsperson who spent a year creating that masterpiece, we're the trainer that tells you about autism from a personal perspective.  We're Mums, charity workers on a quest for justice, faith leaders.  We found a way to struggle through enough obstacles to do those things.  Quietly, quirkily, mourning the loss of friendships we'd love to have had the skills to keep. Exhausted from trying to access sensory-nightmare buildings.  But there we are.  Right next to you.  Unseen, unrecorded, unremarked-upon.   Often not even believed when we say we have a diagnosis.


Our lives aren't made easy for us. We struggle with parts of it, desperate to find support and services, understanding and friendships.  Autism has social, routine literal-understanding and sensory difficulties.  Those mean we have to work extra hard to find ways round those things.  If we are stuck in busy, noisy places for too long, our brain wiring takes in too much information and overheats.  It then tries to escape the pain.  Or switches itself off to cool down.  So, the vast majority of us simply go home early from things.  Or go very quiet.     That's 'typical autism'. About as spectacular as a non-spectacular thing, to look at.


It's not made easier by professionals who announce blithely that we're dangerous, or that the lives of all parents are ruined by our presence.  We are no more likely to be dangerous than anyone else, as a whole population.  We are no more likely to ruin the life of a parent than any other child, as a whole population.  I've lost track of the number of parents who have come up to me over the last 20 years and said how much their young autistic person has given to their lives.  How much they are loved.  How much they are a blessing.  How much they desperately wished they had not judged them just on that more difficult bit  - the bit when they didn't understand autism. 

Yes, parents need good advice, good support, good services. So does every person who is autistic.   Some young autistic people do also have other behavioural conditions that also need a lot of support.   We absolutely must make sure that families and young people have what they need to be able to lead a good life.  I fight hard every day to get better laws, better services for us all.    I've brought up a child who is autistic, and I walked that path.  No, not 'mild aspergers' (whatever that is).  Autistic.  Autistic, ridiculously strong, and very very fast on his feet.  And, you know what, 23 years later, he is the most marvellous person I know.  Kind, caring, responsible, thoughtful. Works with me on training sessions.   If I had based my experience of 'autistic people' on his first few years,  I would have missed the whole picture.  Looking back, any 'challenging behaviour' was him telling me, non-verbally,  that I had misunderstood something that was causing him pain.  And I had. 

We need research that looks for what we offer.  We need research that stops using negative language.  We need studies to stop categorising our every passionate interest as 'obsession' and our every sensible coping strategy as 'defiance' or as 'maladaptive behaviour'.  We need research that stops suggesting we are a disaster for families.  We need research that looks at the positives. We need research that examines autism itself, not 'autism plus learning disability plus speech/language condition plus half a dozen other things'....and then declares all of those are 'autism'.  They are not.   



So, what of the positives?  Ten times more accurate than others?  Honesty?  Integrity?  Passionate expertise in topics?  Creativity?  Do we hear enough of these?  Do we even look for them? 


We can understand what people say.  If we are told that we are a dangerous disaster, year after year, is it any wonder that we end up with depression, anxiety and a host of other things?  Wouldn't you?  Is it any wonder that employers back away from hiring us, with a few professionals wandering about telling everyone how we all need constant care and supervision to stop us behaving dangerously? Some might.  Most of us do not.  Same as any other population of people.  Want to know how many lawyers, accountants and surveyors are autistic?  What about engineers?  Architects?  Computer professionals? We've not even begun to find autistic adults.  Not really.   


I am honoured to be amongst the most wonderful autistic friends and family, colleagues and employees, from every part of the autism spectrum and of all ages.  Verbal, non-verbal, male, female, LGBT+, from different cultures and faiths.  Every one is like a precious and beautiful jewel, much loved and valued.  All deserve a life where we can be safe, enabled and contributing.  Let's work towards that future together. 

Monday, 12 October 2015

More fair - the hidden side of autism

Very good to see researchers observing the positives of autism.

They note that autistic children tend to play more fairly with others, and include a wider range of other children.


They note that many of us are hugely attuned to the distress of others, and feel it every bit as intensely as the person themselves.


They note that autistic individuals are ten times more accurate than most other people in our specialist subjects.


It's very easy to observe an autistic person in a state of panic or exhaustion, and then assume that we are troublemakers who will cause difficulties. No, that's random communication during a brain overheating episode (literally).

The last thing in all the world we want, or need, is trouble.  Our lives are already hugely hard and hugely filled with exhaustion from dealing with myths, misunderstandings and anger. We don't go out to cause it, and we certainly don't want to perpetuate it.

Mostly, we would like to be left alone with those we love and trust.  In a quiet place where we can hear, and see, and feel safe. 

Sometimes that seems like a big ask.  But many of us are working hard towards a world where our gentleness and love - qualities that so many possess in abundance  - can be allowed to shine.




 

Friday, 9 October 2015

Autism: Why 'nice' is irrelevant for pain responses.

I get some strange ideas from people, sometimes.


One is that if autistic people like me are scared, it must be because we're paranoid, delusional, have some form of mental illness, are imagining danger...


It's difficult to explain how much physical pain we are in, every day of our lives, through misunderstandings of our needs.  It's outside of the understanding of most people, because most people... simply are not.


How are we defining such pain?


By noting that autistic brains are physically wired differently.  Our brains take in too much information at once.  When that happens, it literally overheats.  Imagine an electric socket in the kitchen.  Imagine plugging every single appliance in the house into that one socket. What is going to start to happen?  That's it.  You're now imagining the brain wiring physical limits of our brain.  We take in overwhelming detail from social stuff and sensory stuff.  The wiring isn't designed for it.  It overheats.  Eventually the fuse board cuts the power, and we shut down.
 
Imagine being in a crowd where you can hear every single conversation at once, at equal volume, without being able to tune any of it out, for example.  That's us.


We get good at thinking ahead.  At balancing the input so that we have time to recover - to literally let the wiring cool down.  That's autism, from what we are seeing on the brain scans now.


Most of us find things like unexpected touch also extremely painful.  It's like an electric shock to the skin.  And that becomes one to the brain also.  We also find unexpected aggression towards us will have the same effect.  Pain. 
 
The moment that electric shock inside the brain happens, we're temporarily zapped. Pain, shock.  Out of it.  Gone.  It becomes a world of pain and confusion.  A world where we temporarily can't take in instructions or listen to language.  A world where we cannot communicate our needs correctly, or get ourselves to safety.  A world where we become a sitting target...not just for predators looking for their opportunity, but for people to have a go at us for temporary random behaviour or over-explaining or forgetting social rules.  How dare we behave like a person in intense pain.  Why can't we just choose to 'behave'. 
 
We become fearful of people who don't listen to our needs, and put us in positions of extreme pain.  Yes, it may be accidentally - but it's not hard to understand that we need a quiet space sometimes, really.  And no sudden physical contact without permission. I have underlined the important words.  No we don't want social isolation - we just need to be aware of an oncoming hug and agree to it.  And enough accurate info and timings so we can plan for sensory/social overload in the hours ahead.  It's not rocket science.  It's simple respect of our brain design.
  
"But person X who you are now avoiding is So Nice!". 


I get that, a lot.   And that makes a difference to my brain electrocuting itself under Circumstance A B or C because...?
 
It's nothing to do with who is nice.   Why is that even a question in people's minds?   If your friend has a peanut allergy and goes into an allergic episode due to that.... do you rush to them and tell them their behaviour is so unreasonable..... because the person who gave them a curry with peanuts in it is nice?    Well, why not?  Yes, because that makes no sense at all.  You'd want to find out how they ended up with a curry with peanuts in.  You'd want to get help for them.  It would never occur to you to tell them to just be a better Christian and stop reacting to the peanut allergy.   Or offer them some counselling for it.
 
But a few people say it to us, on a regular basis.  


If person X's behaviour has given my brain an electric shock, that's what happened.  It's nothing whatsoever to do with their niceness.   It is not a judgement on them.  Well, possibly it's a comment on how seriously they have tried to understand my safety, if it's someone who has had some training.
 
My questions are simple.  Am I safe with this person?  Do I understand enough about them to know that I can trust them to treat me with dignity and respect if I am in pain.  Instead of turning it into a character assassination of me.  Do they give me accurate information on what's ahead, and when.  Simple questions for simple reasons.


Learn why autistic people are afraid of some situations, or wary of some people who have disrespected pain boundaries or forward-planning needs.  It's not paranoia.  It's not control and manipulation.  We don't hate people.   We have plenty of empathy.  We just wish more people had some empathy for us and the situation we live with.

So, it's a physical difficulty with controlling the internal temperature of brain wiring.  And a real difficulty trusting people who put us in situations where it gives us an electric shock.  Powerful incentive not to be near them again, eh.  The courage we have to keep going back...well, it's quite extraordinary. I am so honoured to be amongst such hugely brave autistic people.

Sunday, 27 September 2015

Really naughty behaviour around autism

There is a huge organisation elsewhere in the world which alleges to act for autistic people. 

It has a lot of very very wealthy donors, and thus a lot of cash.


With that cash, it buys the support of some top class 'spin doctors'.



Recently,  one such 'spin doctor', a paid professional working in the autism-compliance-training field, wrote an article for a large online news provider.


In the article, they allege that only 1 in 30 of us females on the autism spectrum are at the 'higher functioning' end, and that the other 29 out of 30 are basically violent out of control nightmares who spend our days self-harming.  Do we really?  I looked around at my 50+ female autistic friends of all ages and abilities, and noted us going peacefully about everyday life.  Most odd.

So, all very interesting.  If only it were based on evidence.  The statistic is the other way round.

The author then alleges that we use violence to get stuff.  No, we don't.  Autism is not a condition that causes manipulative violence.  Violence is no part of the diagnostic list at all.  Some autistic children have other co-occurring conditions that raise the likelihood of defiance.  Occasionally some other conditions are misdiagnosed as autism, but are more aligned with antisocial behaviour.    A small proportion of autistic people will have 'meltdowns' caused by an internal brain wiring 'epileptic incident', in which they are temporarily out of control.  That behaviour is not designed to get something.  Well, it may be designed to escape from intense pain and fear.  That is not a bad thing, though.  Most of us do not show any defiant or violent behaviour at all.  So, where did that and the other strange statistics come from, one wonders.   

The author also alleges that their own child is nothing like the sorts of children who perform on stage. Those aren't 'real autism', in other words.  Their child is the typical sort of autism.  In one of their articles about their child (who can read, write and talk), they apologise to teachers for having to endure their child and their appalling conduct.  They talk in another about having to fear their child.  So, we are left with the idea that this is a child who is not able to communicate, who is raging out of control night and day.

Except, in another article, they talk about their child starring in a play. Would this be the child who is nothing like the ones who perform on stage, then?  Another article talks about the long conversations that the author and their child have about their games and computers.



There's more that concerns me about this 'expert'.  Another of their articles says that autistic people can appear to communicate, but in fact we're not doing so.  That's fascinating.  Are we not?  Really?


Spin only gets you so far.  Sooner or later, people start querying the wild statistics and the non-matching facts.


If the media are hiring people who are paid by an organisation with a track history of abusive behaviour to autistic people, they will get that kind of article.


It is best to speak to professionals who are respectful.  People who do not put their child in the media and speak about them in the most appalling ways.    People with lived experience of autism, who can explain the realities instead of the myths.

It's really not OK to say dreadful things about your child in public.  That fine young man will soon find those articles...and goodness me, whatever will they think about themselves.  And about that parent for saying that, in front of the world.



Parents, please question articles you read which demonise autism.  Ones which try to convince you that unless you part with a huge sum of money for intensive therapy, your child will be a dribbling mess in a corner, for life.


I didn't speak in any conventional way until I was ten.  I rocked in a corner and would sit and spin the wheels of toy cars for hours.  I now run a national Professional Practice.   I had no expensive training or therapy at all.  Nor did my own son, who is autistic (not Aspergers).  The most amazing and fantastic young man.  I could not be more proud of who he is and what he has achieved in his life.    In fact, none of the autistic people with whom I share life have had expensive therapies.  We'd love a world with a sensory environment that didn't hurt, though.  And people who treated us with respect and love, giving us accurate information and timescales, so we can feel safe and confident.

For all our fine young people, let us find ways to look at truth, not spin.



Friday, 25 September 2015

Autistic Law Abiding and the Media

Today has seen another flurry of news reports about autism.  Unfortunately, they have been about a young man who has a very specific severe mental health situation which leads him to want to kill people...and who has tried to do exactly that in the past.  He also has learning difficulties.  He also has a low IQ.  He is also autistic.  He is on trial for an incident that led to the death of a young woman.

As ever, the only thing most of the media have focused on is the autism.

Please, media, you are lovely and dedicated people, and I know you want a good story.  But autism has no known link to crime....other than two things:



a)  Some criminals soon realise that some autistic people may be very naïve...and fool a few of our young autistic folk into doing silly or criminal things.  For example convincing a young autistic person to deliver some 'packages' and collect money...and then the young person finds out it's drugs in the packages.  It never occurred to them that this was a set-up.  Lack of social understanding.   We're doing very good work with the Police and the Courts to get better understanding of this.

b) Autistic people are nearly all victims of crime.  We know for example that 30% of autistic women report that they have been raped.  80% report bullying.  70% report sexual victimisation generally. Huge numbers are victims of other general violence and fraud, too.

We know that there are some 550 murders in the UK every year.  If 549 of those are by people who are not autistic, would a headline be, "549 non-autistic people are killers - be afraid of non-autistic people!".   Indeed not.

But if one of them happens to also be autistic, that's often the focus. And it's also the difficulty.

The thing is, it makes our lives so much worse.  We're already so often misunderstood.  We're already battling a system that wants to find fault with all we are.    Autism is a sensory processing difference and a need for routine.   It's not a criminal condition.   It's no more relevant to criminal intent than the size of the person's feet.  It makes it more difficult for us to find friends.  It makes it more difficult for us to be employed.  It makes it more difficult for us to be trusted to help with charities and neighbourhood groups.  People become afraid of us for no good reason.  Such a sad thing for everyone.

So, lovely media folk, please can we ask that you be careful about the ways in which you are reporting things around autism?  Get to know us.  Most of us are wonderful, socially-responsible people who work very hard in society.  We work on getting better laws, on safeguarding, on improving care and education.  We're as responsible as anyone else is likely to be, as a group. 





Get to know us, and help us to really make the country safer and better informed. 








Thursday, 24 September 2015

Autistic Faith and God

Before I knew that people were people, I knew that God existed, and that I was loved by Him.

As a child, I was functionally non-verbal for some years.  I could repeat phrases and sentences, or individual words - but I had no idea what any of it was for.  My speech either wouldn't happen at all, or I would speak slowly and clumsily.  Even now, speech can abandon me when I am in 'shutdown'.

As one of the visual-thinker autistic folk, I think in pictures, not words.  Words have no meaning at all in my brain, even now.  Or on paper.  All the time, I'm imagining what something looks like, or does.

I learned about God and Jesus from pictures. From texture.  From warmth.  From touch.  From scents.  From pattern.   I still do.
With senses that take in vast detail from the world around me, mine is a world experienced as intensity and beauty.  As breathtaking marvel.




I find God, and joy,  in things large and small.  An endless sky.  The peaceful sleeping of a newborn baby.  In the beauty of stained glass and choral music.  In the companionship of friends.   In a carved stone, given with love by a dear friend.   Especially that stone. The coolness, living in a world with a brain that wants to run 'too hot'.   The smoothness, in a world that so often feel painful to the touch.  The message of hope written upon it.  And the significance of the friendship.  All bound up in that link to God.  He who made heaven and earth.  The dust from which we are made...which also makes that very stone.

So easy to think, "Oh look, some autistic person who is focussed on a pebble - bless 'em".


Our spirituality isn't easily said in words.  But it so often runs deep.  Deeper than the deepest ocean.

Ours is not a pale shadow of 'real' faith, 'real' love, 'real' gift to God.   It is something marvellous. Something extraordinary.  Something to explore, and learn of, and cherish as fellow travellers on the path that Jesus set for us.  Our gifts in sharing God's love with others?  Those are not a broken version of 'real pastoral skills'.

The times in my life when I have felt alone?  It's often been autistic people-of-faith (whether Christian or Jewish or Muslim or Buddhist or others) who have been there for me.  Offering love, and listening, and caring.  Not once have they grown tired and walked away.  Not once have they judged me and condemned me.  Not once have they shoved burdens onto me to make themselves feel better.  A lifetime of life in and amongst autistic folk of every kind, whether verbal or not.  As companions, colleagues, friends, faith leaders.  It has been a shame that, during the worst of times, it's often been those of other faiths who have wanted to see my humanity...and a few of those of my own faith who have lined up with condemnation.  "People like you are a danger to others....people like you have no souls....people like you can't be real Christians...people like you are evil...people like you are self centred, lack empathy, can't be trusted...I'd never be alone with someone like you - think of the risk I'd be taking".  Goodness me, imagine if this was the narrative of your faith and humanity, taught to you by some others of that faith.  Just imagine.  I am grateful to Christian friends who have tried hard to undo the damage of others in our own faith.  Many Christians are lovely folk.  I am not for one moment saying that all are bad.  But I am relating a narrative that has been there my whole life, in our churches, from some. A narrative that I and so many others want to help change, for the better.

That we live in a society where some so desperately wants to see us as broken, damaged, in need of fixing, sure to fail?  Some desperately want that to be true.  So desperately that they will do anything to prove they're right.  It's then like taking a dazzling, musical, rainbow-hued bird of paradise from the trees, holding it under water, and saying, "There, see how it struggles and fights - told you they were dangerous/ useless/ unsuited to God's purpose - look, no singing at all!".  No, really, it is like that.   A lifetime of some people trying to 'drown' us to prove something untrue? Putting us into situations where of course we're going to fail...and never once enabling us to succeed...using just such simple cost-free adaptations?  No wonder we are tired.  No wonder some are damaged by it.  What have we thrown away through such thinking?

Go find an autistic person of faith.   Talk about that faith, as friends.  Instead of thinking you are teaching us, listen.  Watch.  Learn.  Look beyond words, to art, and movement, to sound and pattern.  To our music and our stillness, our patience and our honesty. To these and so many other wonderful things.  You will find a wisdom.   And friendship.  And faithfulness.  Things new and amazing.  And you will find someone dearly beloved of God, right there, before you.

Monday, 21 September 2015

How To Pick Autistic Clergy

First of all, let's get in the right mindset for this.

Do you have any friends or relatives who are diabetic?  Are there, do you think, any Clergy who are diabetic?  Would diabetes stop someone from being an effective Priest?
I'm guessing you're agreeing that it wouldn't.

Diabetes means there is a risk of blood sugar levels being out of control for a while.  During such a time, a person may act 'out of character' until they solve it with sugar/injections/whatever they need.  Does this make them a bad person?  No, it does not.

Suppose there's a person who is diabetic and also a sociopath.  Are all diabetic people sociopaths?  No.

OK, let's look at autism.  Autism is where the brain is so highly tuned for detail that there is a risk of it overheating temporarily from time to time. Quite literally, too hot inside.  And when that happens, the person may act out of character for a short while until they solve it with a rest break somewhere quiet.  That lets the wiring literally cool down to operating temperature again.  Most balance their brain input so carefully that you'll never see it happen.  Does this make them a bad person, if it does happen occasionally?  No, it does not.  It is a physical brain wiring difference, not a disease or a lack of empathy.


Suppose there is an autistic person who is also a nasty individual.  Are all autistic people nasty? No.

Hopefully that's been a useful exercise in how to think about autism.  It's just a brain design difference.  We're lovely people, the vast majority of us.

Autistic people get to be their own expert on avoiding brain wiring overheating.  We work very hard all day long to think ahead.  Thinking about our sensory environment.  Thinking about social overload too.  And how to rest enough before and afterward a big event. We already know our limits. We've lived with them our whole lives.


We have autistic clergy aplenty, from the million autistic people in the UK.  Yes, even one or two Bishops and Archdeacons.  All doing a fine job, managing people, applying pastoral excellence, running committees, organising diaries, and being superb theologians and all else.

And for some reason, we as a church often pretend that we don't have any.  Which means most of our autistic clergy are hiding, worried that someone is going to say, "Aha - you have none of the skills we need (even if you've done the job brilliantly for years!) Be gone!".  Well, it has happened.  Unfortunately.

Now the thing is, autistic folk also cannot see people too well, nor see their body language too well. Surely that is a deficit, you say?  Well, no.  Instead, we use other senses to detect what we cannot see.  Another of our top tips is to ask really good questions and to listen really intently.  We can pick up a huge amount that others cannot - but often need a little bit of thinking time.   Not worse, just different.

If you are picking out who's going to be superb Priest, you need to be aware of autism differences.  You need to be clear that things like eye contact and face expression are not 'readable' from us.  Any more than they would be if a potential Priest was visually impaired.  Would we decide that people with some visual impairment can't be Priests?  What of Paul the Apostle, then?


You need to understand that we give literal, honest answers to literal, honest questions.  We're unbothered by making others think we're marvellous.   That's not a lack of ambition or a lack of talent.  'Selling ourselves' is something we don't do.  We're practical folk.  A good interviewer or DDO will ask good questions, and allow time for good answers - not only during an interview, but afterwards.   They will ask people who understand about autism.  They will take good advice on autism.  They will look at what the person can do.  Quite often, those feeling a Calling from God will turn out to have the most extraordinary skill set.  I've known autistic clergy with photographic memories of every verse in the Bible and Lectionary.  Ones who have extraordinary musical talents.  Ones who have a true gift with working with the young, or old, or more vulnerable groups.  Ask for a portfolio of experience.  Do a few visits to see them in action.  Just sitting in a room and doing an interview?  That will reveal nothing.  It's the wrong thing.  It's not a disability-adjusted way of doing it.  Asking a clueless clergyperson in the community what they think of someone who is autistic?  It's more likely to reveal prejudice than a useful answer.  If fellow clergy have no training in autism, they can misread it as a whole list of negative stuff. Or arrive with a whole set of myths from the ancient past, where autism was entirely misunderstood.

And if there is to be good or bad news ahead, be really clear about when that is going to be delivered. And how. And who will be there for that person, at the time and afterwards, to listen and support them.  Never, ever deliver bad news unfairly AND unexpectedly on an autistic individual, and then just show them out of the door, with no support in place.   Again, take good advice from your autism advisers on what to say and when, and how.  Yes, Priests have to deal with a lot of the unexpected.   But the most devastating news of all is arguably to tell someone autistic who has a calling from God that they are mistaken about it.  That they have imagined it. That their way of accessing spirituality is 'wrong'.  That they have nothing to offer God other than vague stuff anyone else could do.  

Autistic people are amongst the most spiritual, and most dedicated Christians I know.  The level of care, love, dedication and passion for this faith is beyond measure.  If a post is not right for us, we will need to know what we can do about that.  We will know to know a next step, an alternative, a way forward.  Arguably, so does everyone else. But, for us, 'what next' is so important.  Right away, not days later.

Our dedication in getting to that point of asking to serve God, to let His love and presence be glimpsed through the lens of autism?  That has already taken breathtaking courage....endless dedication....unending hope.  And sheer love.

It is never something we enter into lightly, unaware of the challenges we face.  Really, really listen.  Really explore.  Because what you have there is what Jesus found in his friend Nicodemus.  Someone who was baffled by the occasional verbal expression, but was there for him 'through hell and high water'...and there for him at the tomb at the very end...when so many had fled.  I'd want that friend, the same as Jesus did.  Find out why.


Me, I'd not volunteer for the job, ever.  I don't have the skill set.  I can run a company and lead worship and steer charities to great success....but my own skill set is not that of a Priest.  I know this, and wouldn't dream of trying to do a job I cannot do.  Others of my autistic clergy colleagues - goodness me, they have been God's voice and hands to me.  His love shines through them so very very clearly, and I speak with so many who are thrilled that they serve Him.  Don't judge our disability.  Judge us, as individuals.  Fairly, and respectfully, and carefully.


Friday, 18 September 2015

'Vulnerable' does not mean incompetent

This is such an important one.
Anyone can be 'vulnerable'.  Anyone at all.  For example, if someone is a patient at a hospital, or in a dentist's chair, they count as 'vulnerable' during that time.
It is not true to say that if someone counts as 'vulnerable', they must be incompetent, a danger, someone who cannot be trusted.  Well, not unless we have that view about every single person on the planet.

Vulnerability is about not being able to protect ourselves in particular situations.  Some people who have a disability will be vulnerable in some situations.  The term for it is often, "An adult who may be vulnerable". 
Autism certainly does make us more vulnerable than usual to predators, for example.  Not being able to see faces and expressions well is a huge disadvantage.  And our social 'clumsiness' is a signal to predators that we could be an easy target.

But that vulnerability is nothing to do with our personal integrity, or our skill set.
I've seen some really appalling thinking from some individuals over the years.  The sort of thinking that puts all people like me into the, "...oh that sort of person can't be trusted - they will always need supervising" thing.  Or the, "Gosh, I'm alone with Ann - could I be sued for it?" nonsense.  Well, it is. 

No autistic person ever gained extra safety by ordinary everyday people being afraid of us, afraid of being with us, or denying us humanity and rights. That's not what safeguarding is for.  That's not what the term 'vulnerable' means, or should lead to.
Vulnerability means an opportunity to respect an area of possible difficulty for that person.
It may mean a person who could have the most enormous talents and skills to bring to a situation, but who simply cannot see people very well.  Or may have difficulty communicating in some situations.  And we all do, as humans, don't we.  With autism, those difficulties may be specific.  That's the difference.
Watching out for predators targeting us?  That's handy. 
Making sure we are working within our area of skill and training?  That's great.
Don't do the, "Gosh, they're all incompetent" thing.  It's not true.   At all.