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'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

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.  Adding that by 'ask', I'm including all forms of  communication, of which distress behaviour is one form. I've yet to find an autistic person who cannot ask for something. The problem is that most teams don't 'speak autism', which is its own language, culture and identity.

That's a bit of a problem, isn't it, when a whole behaviour programme is designed to address that particular situation.  That the behaviourist is able to detect the problem, and has the answers.

Whilst the BILD video does not mention autism directly, BILD are absolutely clear that positive behaviour support is meant to also be used for autistic people.

Suppose I'm in a café.  Here is my experience of being in that café.  Genuinely deafening, genuinely painful.   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 with the sensory pain?  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).

I can imagine some of the behaviourists claiming, "But, Ann, that's not what happens! We take sensory needs into account, honest guv!".  I'd believe it...but in reality what I see, relentlessly from PBS and ABA teams, is them guessing...or asking the parent.  To give one of a book-ful of examples, I went in to reassess a situation that had gone very wrong.  It had been handled by an individual who appears in the credits of that BILD video.  The team had assessed Person X for days.  Invented a plan.  Instigated the plan.  Person X then had such a meltdown that it became a very major safeguarding situation indeed.  "But we have a PBS plan.  We're following the plan!", said the staff.  For sure they did.  I observed Person X for half an hour and noted a number of sensory and movement processing difficulties.  I asked where those were on the plan.  "Oh, we didn't know about those", they said.  I observed Person X's accommodation, without them being present in it, and identified where Person X would sit, work, stay away from.  "But how did you know?", said the team.


I get fed up with it.  Yes, there's some good and experienced professionals out there who are respectful about working with us, ready to learn, acknowledge their limitations, and do a good job.  I won't for one minute claim otherwise.

But commissioners pay a fortune for this stuff, and too much of the time they might as well be picking out random answers from a hat.  You see, non-autistic people quite literally cannot see and hear what autistic people see and hear and sense, etc.  It's pure guesswork.  Autistic specialists work to decode behaviour and environment, and speak the same language as the autistic person.  End result - may not be perfect, but by heck it's better than guessing or asking the parents.  We should ask the autistic person who is being assessed, and realise their answer may not be in words.

Yet nearly everyone in PBS is so nice.  Endlessly nice.  After all, it's a really Nice behaviour support plan.

Or is it. 

Actually, little Jonny may be in a lot of pain.  If we want to stop pain, we take the source of the pain away, by using our absolute best teams to detect the possible problems.  We do not bribe the child to put up with the pain, because we didn't spot the source of 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.  Engage with autistic experts.

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?
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 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?