Autism and Hospital Visits

I've spent a lot of time in hospitals.  For 14 months, I was in one at least once a week, on average.
They are a sensory, social and routine-needs nightmare for autistic people of any age.

Find out who in your hospital is responsible for disability access.  Talk it through with them.
Building trust in the hospital and its staff is so very important.

A good resource can be found at http://www.autism.org.uk/living-with-autism/out-and-about/my-hospital-passport.aspx 
This is via the National Autistic Society.  The form lets people write about their particular autism needs.  It can then be handed to hospital staff to tell them those needs.

Above are two pictures.  The one on the left shows a hospital medical room, probably as most people would see it.  The picture on the right shows the intense colours and patterns that I would see.  This is what happens to my vision, when I'm stressed and under fluorescent lighting.  The lighting also flickers really badly, so it's like a strobe effect. 

I know there are going to be intense noises from the equipment, and echoing corridors outside.  I know there are going to be intense smells from disinfectants and other medical stuff.

I also have no idea where I will be waiting...probably under fluorescent lighting....or for how long.

All the time I'm waiting, my brain is getting more and more exhausted.  Sooner or later, the pain/overload builds up inside the brain wiring.  Quite literally.  And then I am almost unable to communicate at all.  The world becomes very scary indeed.  I will then only give short standard answers, not accurate ones.  Anything to get out of that room and away from the pain.

Hospitals don't often keep to appointment times.  Instructions and signage is often vague or misleading to really literal thinkers.  And staff assume that we 'just know' what they mean.  Often instructions are in complex language, heard against a background of other voices. It becomes one huge noise. It can help to have a picture of what will happen, not just words.  Do ask.

No wonder we get scared.  That's before someone starts prodding us, injecting us, examining us...with all the sensory difficulties there too.

It helps to have a known appointment.  First appointment of the day is good.  If there is a delay, please tell us.  And tell us where we can go to wait quietly away from others.
It helps to do a pre-visit, at that time of day, to test-drive how to get there, where to go, what the waiting room is like, what the loos are like, what the consultant's room is like.  Hospitals may be able to arrange that.
It helps to have a quiet space to wait in - or be allowed to wait outside, and be called in by mobile phone etc.
It helps to have that 'hospital passport' ready, and for teams to deal quietly and calmly with me, taking their time to explain.  Checking for understanding.
And explaining really carefully what physical things they will do.
If I need to stop for a while, is that possible?
Can I take a friend or relative in with me?  A calm quiet person at my side can help a lot.
How do I say 'stop' when I really have had enough - and will that be respected?
Can I take in something for comfort, like a favourite game or item?

Working through all of this gives many of us confidence that autism is being taken seriously. We truly do have brains that take in too much sensory and social information at once.  They really do overheat inside.  We need to be able to guess how much we can handle at once. So accurate information is very important indeed.

Too many autistic people cannot access healthcare at the moment.  It's as daunting as a wheelchair user finding that everything is up five flights of stairs.  Working as a team with the hospital makes the impossible possible, and it's worth it..  

Autism - Social Clumsiness not Nastiness

First, if you are able, get to a computer with sound.  Switch it on and turn it up as loud as you can handle.

Second, watch this two minute film about an autistic boy entering a cafe.

https://vimeo.com/52193530

Wow.

That's the world we live in, 24 hrs a day.  A world so 'loud' that our brains are utterly overwhelmed by it.  Autism means that our bodies take in too much information from the world around us.  So much that we are deafened and blinded by it.  So much that our brain wiring literally overheats... and often stops us talking clearly with others.   Eventually, many of our brains will shut down all communication, to try to let the brain wiring cool off.

In the 'bad old days', those behaviours were believed to be deliberate nasty choices by us.  It caused a whole set of myths.  Various baffled psychological types would look over their spectacles... and declare that we were deliberately nasty sorts, who needed to be forced to go into restaurants and other such places.   And those myths grew and grew, and spread and spread.

Thank goodness for modern science that has shown what our world is like.  It's shown the bravery and courage of so many autistic people.  The ones who want to be with you at your event.  The ones who will go into that restaurant, or that busy street with you.  The ones who will attempt to be your friend, amongst that degree of pain and fear. 

We know that if our brain wiring overheats too much, it can feel like an electric shock. And afterwards, exhaustion.  An increasing number of specialists strongly suspect that autism is linked to epilepsy.  So it's been like someone going up to a friend having an epileptic seizure and accusing them of 'attention seeking'.  Just totally wrong.  A complete misunderstanding.

It's fear that drives us...fear of the pain of that sensory/social overload.  And we have a brain that doesn't communicate very well with non-autistic folk.  It's too literal.  We believe what we're told.  So we're often socially naive when with non-autistic people.  We can't see your body language or face expression.  Voice tone can be a mystery too.  We wouldn't know if that waitress in the film was bored, or sad, or empathetic, or angry, or anything else.  There is simply a person with a totally blank face,to us.   We then have to guess her emotion and guess our response.  If we get it wrong, yikes, often people get so angry with us.  Many, like me, can't even recognise who's who from their faces.  The picture below shows what that looks like, to me. It shows a group of people with their faces blanked out.

Imagine being in that cafe, in that much distress, and then complete strangers get angry with you, too. We've done that to too many autistic folk.  We've judged them against a standard that no-one else could possibly achieve either, if they had that brain design.  The person needs to get to a quiet place for a while.  They are genuinely afraid of the pain from the sensory/social overload.

If we're asking for help, it's not manipulation or laziness.  It's not disruption or 'challenging'.  If we have found a way to use words to ask, they might be clumsy. They might be 'annoying'.  But it's a genuine ask.  If we are distressed, it's no wonder.  Let us get to quiet and safety.

Please don't judge us on the basis of the whisperers who tell you nonsense about autism. Or those who only know old myths.  Find out for yourself.  Get to know all the courageous, kind, responsible and caring autistic folk around you.  We're most often lovely people, much misunderstood.

https://prezi.com/4qvptbyqpvfy/prosopagnosia/  is the photo credit

Autism Myths

Ouch!  Another morning where the media reports people saying things like, "You must be autistic - you have no feelings and no empathy".
This is such a damaging myth.
Let me explain it this way: Supposing you have a friend who is Blind.  And you are feeling sad.  You go into a room where your Blind friend is sitting, and you look sad.  A silent tear runs down your face.  Your friend says nothing to console you.  You accuse them of being unfeeling, cold, a rotten friend.   What would be wrong with that accusation?  Yup.  Your friend cannot see you.  They cannot see that you are upset.

It's just like that with autism.  Just the same.   Generalising, our brains do not have the right internal wiring connections for decoding faces and body language.  Or hearing tone of voice very accurately.  All the signals you think you're sending....well, we're not built to detect them.

If someone comes up to me and says, "Ann, I am so sad because...."  then I know they are sad.  And then I feel dreadful for them and want to be there for them.  I have to be told how they are feeling, because I cannot see their face properly or hear their voice tone accurately.

Some autistic folk have emotional delay or language delay, too.  That makes it harder.  Because even once we've been told something, we've got to wait patiently for our brains to think, "cor, what did that mean".  And then find just the right set of words to say how we feel inside.  Meantime, people are looking at our faces for signs of face expression that we can't do very well.  And waiting for an instant response, the same as they can get from non-autistic people.

It's so easy to mistake slower response or 'blindness' for a lack of compassion.  
There is good research showing that autistic people are generally more fair than non-autistic ones, and more concerned about social and world justice.  We are caring folk.

Working with so many hundreds of amazing, wonderful,  gentle, loyal, honest autistic people all over the world, I can honestly say that I have never met a finer group of people.
It hurts most of us so much when people assume we are unfeeling monsters, and pre-judge us.
Most of us love being with people, and value friendship and working relationships enormously.  The same as any other group of people would.

Take time to get to know us.  Refuse to accept negative myths about autistic friends.  And be ready to explain how you feel...and what would help, in really clear ways.  We'll appreciate that greatly.

Church Access for Disability for £600?

I'm not just autistic.  I'm also dyspraxic, and have arthritis and a spinal condition.  And I've had cancer which has left me with sensory loss and long term pain.  So I have to think about all sorts of disability accommodations.  Especially when visiting places with friends and family who are Blind, Deaf, hearing impaired, wheelchair users etc. I am not a formally approved Access Consultant, but I am the leading expert on autism access for churches in the country.  What I say here is a generalisation and a personal viewpoint from long experience of being faced with difficulties, not an Official Statement.   It is absolutely true that every single person needs access to everything.   But if we start from there, often the task looks so great that most give up.


About £600 and some planning will do it for 90% of disabled people. 


People tend to assume I'm making this up.  Or that I have no idea what I'm talking about.
But it's true.  Even the most rural, historic, inaccessible church can cover 90% of disability needs with a budget of  about £600.


People think of disability as being wheelchair users.  After all, that's the international symbol for disability. 
There's about 800,000 wheelchair users.  Yes, each person who uses a wheelchair for their freedom needs to be able to go to church etc.  Definitely.  I have many friends who are wheelchair users and I've felt their pain when they cannot access things.  Especially after a long and difficult start to the day to get ready for it.  Likewise, some churches are inaccessible for me as an autistic person and there's not a lot that we can do about it right now.  But we can do something in most buildings.


The Equality Act 2010 is a very fair law. It says that if a place really cannot afford to do something, it doesn't have to.  If you take good expert advice, and plan carefully, you will know what is doable in your budget.  And what isn't.


So, let's do the do-able instead.  What follows are just examples, not a definitive list.  It is to get you thinking.  There's definitely more that can be done for each group.  Ask the individuals what will help.   Find out who your Diocesan disability adviser is. A good access consultant can really help with thinking and planning.  Do your planning and write it down, carefully, with the wisdom of someone who knows about disability access.   


We have some 3 million with hearing impairment.  In a small church, a portable hearing loop costs £100 to £250.  Not perfect, but a start.  Make sure people can see your lips clearly when you talk. Talk to someone with hearing impairment in a quieter place if you can.




We have some 2 million with visual impairment.  Some safety hazard tape on steps and edges, and large print hymn books and Bibles will cost you £50 and will help many.  So will a bowl of water for guide dogs.  That'd cost nothing if you re-use a plastic tub.




We have around 1 million autistic individuals in the UK. who may struggle to see and hear in a noisy service.  If your church has a website or blog, put a plan of the building on it.  Or on the noticeboard. Tell us where a quiet corner is, or quiet room. Be clear about what will happen in your services - a couple of minutes of explanation.  Buy some standard lamps that don't use fluorescent bulbs, for any areas normally lit by fluorescent light. £20. (Some autistic people cannot cope with fluorescent lighting as it looks like a strobe light).  Buy a set of noise-cancelling headphones for those who struggle with noise levels. £30.  Read the top tips for autism in the Welcoming Those with Autism guide for churches (easy to 'google'). 
 


We have some 10 million with arthritis who might benefit from a chair with arms and a cushion. And anyone with co-ordination difficulties may appreciate a mug with a large handle  - rather than balancing a tea cup on a saucer.  Cost £100 as a starter.


We have over a million with learning disabilities who will appreciate extra explanation and an easier-read newsletter. Often local charities are pleased to help guide you on this.


Be aware that 10 million in the country struggle to read English beyond primary school level.  Be mindful about who you pick on in the church services to do a reading.  Perhaps read out instructions rather than assume everyone can read them.




Be aware of where the nearest usable loo is, even if it's not in your building.  Maybe set up an emergency loo-sharing agreement with a nearby house.




Be really welcoming and inclusive.  Disability inclusion isn't, "Letting the person sit in the pew and then go home". That's such a lonely experience.  It's about friendship, about love, about finding out what we can offer your church.   We're friends and colleagues, prayer partners and Bible Study leaders.  We have our own skills and abilities to bring to your church, and we don't want to be objects of pity or the 'scary person we let sit in the corner'.  We want to help, and to share, and to worship God alongside you.  Get to know us as people.  Often we can bring our own solutions with us.



None of the above has needed building works, grants, upheaval, 17 committee meetings, scary inspections or breaking open the Diocesan gin.  If that what was you were imagining...

It's not a definitive list.  You have to do your own list, for your own building and congregation.   But it's potentially just helped 90% of disabled people and those who struggle with reading.




Is there another benefit?  Yes.  Historic rural churches who are accessible in the ways shown above tend to grow by an average of 2 new people a year.  (Robust research over five years).




If there's bigger budgets, fantastic. Look at grants.  But don't let historic rural buildings and tiny budgets put you off.  

Like we read in the Bible, all are loved, all are welcome.  And all are your new friends.

Full Access Church

April 25th. 


Pleased to be a small part of #fullaccesschurch on Twitter..
Yesterday, I was asked to speak to a conference filled with world experts on autism diagnosis.  They asked me there as a fellow expert, to teach them about autism and women.  Effortless and wonderful.
The week before, I was asked to train the senior staff in a school.  Before that, NHS staff.  Before that, setting up national conferences for the Government All Party Parliamentary Group's Advisory Board, for which I am Vice Chair.
In my working life, I'm MD of a Professional Practice, invited to corporate events all over the UK.  None are the slightest trouble.

So why is it that when I ask to go to a church event or festival, 9 times out of 10 there is silence. 


Is it theology?  Are churches somehow thinking that God hates autistic people?  All one million of us in the UK?  That it doesn't matter if we are Christian or not?  That the promises made at our Baptism are null and void if we get a diagnosis - that promise of support and love for us as fellow Christians?


Is it myths?   That we lack empathy (no) or all have some behavioural condition that requires huge amounts of rugby-tackling or similar (goodness me no - that's no more likely than for anyone else on the planet).


We want to be your friend.  Our friendship and love is not tainted, not a trick.  It is there, along with our gifts, skills and abilities, whatever those might be.


We want to stand alongside you, in love and friendship, in our churches.   At our Christian festivals.  At weddings, baptisms, funerals, fetes, concerts, school productions....in all walks of life.


You are loved ....and we want to join in.  Find out more.  Google welcoming autism church and have a read.

#fullaccesschurch  Because we're good news.

Equality Act 2010 for Churches re Autism

A million autistic people in the UK.

As we know, it's a brain design, built for accuracy rather than instinctive people-skills, and we have to work hard to learn social rules.   Honest, caring and gentle folk who can bring much to every group we are part of.

Some 860,000 autistic people will go to church at some point during the year.  Maybe as a regular member of the congregation.  Maybe as the church leader.  Perhaps as the organist, or treasurer, or one of a hundred other roles.   Some will attend weddings, funerals and baptisms as guests.  Some will attend fetes and events at the church.
Every parish will have an average of 90 autistic people in their area.  Most may be very wary of announcing their presence.  Some may not realise they are autistic at all, of course.  Unfortunately, if there's a single one who is more 'lively', they will be the focus of attention rather than the 89 quiet individuals who get on with things unnoticed.  Well, mostly, the 89 others who try turning up to church, get really bewildered... or find they are facing sensory or social overload... and may retreat in dismay.
The Church of England has good resources for welcoming and including everyone on the autism spectrum.  

It is vital that every church leader, every youth group worker and every voluntary group leader has a good basic understanding of autism.  Every single group will encounter someone autistic at some stage.

There is nothing very complicated about including us.  Once people realise that our brains see and hear too much detail, and need time to process it all....and time to recover from the incoming information, it's easy to work out what will help.  It's also almost cost-free.

Many groups know that they need to include those with hearing impairment, for example by providing written materials, a hearing loop, perhaps a sign language interpreter.

With autism, there is the same requirement under the Equality Act 2010 to make sure we can access services and events, without a struggle and without embarrassment, or anger about us asking.

There is a legal duty for all leaders of groups to plan ahead.  Even if they aren't aware of anyone autistic in their group, they must have a cunning plan for accommodating disabled people.   Sometimes people get quite panicked about this, and wonder if it means they have to anticipate every single need of every single person in advance.  No.  But they do have to plan for the basic needs of the basic disabilities; wheelchair/mobility needs....hearing impairment needs....visual impairment needs....learning disability or reading difficulty needs....and autism needs.  Those are the 'big disabilities' that everyone should have as a basic list.
Knowing about other disabilities too is of course important, but it's reasonable to plan mostly for the most common ones. Then fill in the detail on the others when needed.

So...plan ahead.   With autism, think ahead to where a quiet room or space could be.  Check whether there are fluorescent lights at the venue and see if there's a venue that doesn't have them.  (They flicker and cause difficulties for lots of autistic people).  Check whether anyone is planning sudden loud noise as part of the event, and warn of this in advance.  If you know there's an autistic person attending, be prepared to give them advance info on venue, timings and that quiet room location.  Ask them what would help, and be prepared to give extra time for answers to that question. Some will appreciate you finding a 'social story' about going to church.  This is a picture guide to what will happen.   A basic one can be obtained and printed out, or customised to the service or event.   Help is available.  Some will prefer to answer in writing rather than in conversation.  Don't think this is some threat by 'putting things in writing'; it's just that some of us aren't good with using spoken language, and need thinking time.
Don't mock autistic people or our mannerisms, please.  Don't leave us 'till last or allow leaders to pretend they are too busy to help us.  Don't try to make us pay for disability-adapted materials we may need.  Any of that is illegal and leaders don't want to be doing it.  It's also something that makes autistic folk very sad; lots of us love being with other people and really want to learn about God and be part of our church communities.  Many are very lonely because of our difficulties with social skills, and appreciate a chance to be part of something so amazing.  It's a real sadness when we're met with a closed door and a "I'm too busy" email back.  We're not scary monsters. We're people like you, with interests and emotions and needs and talents.

Get good advice.  There's loads out there. The internet is awash with handy info.  You have the main guidelines at http://www.oxford.anglican.org/wp-content/uploads/2013/01/autism_guidelines.pdf as a starting point.
And enjoy.  Autistic people are honest, truthful, brilliant quirky friends, and each is someone loved and cared about by God.  Get to know us, and get to find out what gifts we can bring to your group and to God's presence.

Supporting Children on the Autism Spectrum

A perspective from an adult with autism, who has brought up a fab son with autism, and works as a national adviser on the subject.

Autism is a brain design difference that appears before birth, and stays with us for life.  Generalising in all I write here, our brains are built for being specialists on subject.  They’re ten times more accurate than those of others.   We’re very logical and honest, with a quirky but amazing sense of humour and strong loyalty.  We can see detail and pattern that you cannot see, and hear extraordinary detail from the world around us.  Autism has positives.

It also has negatives – because we’re living with a brain can’t filter stuff out properly, and can’t see people properly.  You know how Blind people are those who cannot see because not enough light can get to their brain in ways that make sense to it?  And Deaf people cannot hear, because not enough sound can get to the brain in ways that make sense to it?   Ours becomes ‘blinded and deafened’ by ordinary everyday things.  Why?  Because it takes in too much information at once.    Think of a restaurant. You can hear a conversation from your companion, yes?  We probably cannot.  We can hear every conversation in there, all at once.  It’s a wall of noise.   We can’t see body language properly, or face expressions.  Eye contact actually hurts most of us.

Sooner or later, our brain wiring overheats from all that input.  It becomes confusing, and painful, and scary.  We desperately need to avoid this.   If it does happen, we desperately need a really quiet place to let it cool down.

We also need really clear, short instructions from those around us.  We’re very literal, so if you tell us to ‘pull our socks up’, we’ll probably do just that.  Then we may wonder why you think we’re being rude.  If you tell us to do the work ‘on the table’, and we get on the table, we’ll be puzzled when you get angry.  It’s what you told us to do.    Many of us are visual thinkers, not word-thinkers.  Pictures may really help.  Do ask.

We also struggle to hear your voice tone.  If you say “I didn’t say you could eat that cake” or “I didn’t say you could eat that cake”, both things may sound just the same to us.   Emphasising particular words is not handy.   Say what you mean by using a different sentence instead.

Because we are trying so hard to avoid brain wiring overload and the pain that goes with it, we need advance info.  We’re trying to calculate social interaction overload....and sensory overload.  Are there going to be crowds of people all wanting us to hear them ....all wanting us to do eye contact (which hurts us), etc?    Are there flickering fluorescent lights overhead that seem like a strobe light to us?  What about massive background noise that others can filter out?  You can’t see or hear what we can see and hear.   Same with overwhelming smells in a room, or rough textures.   Things can also be fascinating for us that you would find totally boring, because of our sensory differences and our extreme specialisations and interests.   And we cannot see if you are happy or angry or bored.  You have to say.

So it’s different, working with us.  Different can be very good.  But so often people think we’re just being rude.  We’re not.   We’re trying to be friends with you, but in a world that is so overwhelming at times.  Our accuracy and sensory skills can be a great advantage for many things, given a chance.

Be patient.  Ask what helps.  Chat to us in short clear sentences. Sit alongside us, not opposite us.  Give us a chance to think about our answers, or use pictures to communicate with us.   Make chat about something factual, not about our emotions, or random ‘small talk’.  We may find random conversation very scary.  Think about tone of voice – we may miss sarcasm or jokes.  Be aware of sensory needs and find a quiet space for us to escape to if we need it.  Say what you mean, and build that trust for us.  Be accurate on timescales you give us, too; we’ll panic if you say, “I’ll be back in five minutes”, and you take seven.  Or ten.  Or twenty.  Instead, learn to say, “I will be back soon –between five minutes and half an hour.”  Be aware that we can find unexpected touch to be like an electric shock, so always ask and wait and be gentle and careful with a reassuring hand on a shoulder, etc.

It’s little things that make a huge difference for us.  Autism is a wonderful and amazing thing to have, but it’s very specialised.  Work with us in a way we can handle, and it’s always worth it.