Thursday 31 March 2016

Autism: Affirmation, not Awareness please

Many autistic adults are speaking out online and elsewhere about 'Autism Awareness'.
Many of us are worn out dealing with it.
Sorry, but we are.  Truly.

You see, when research was done, 97% of people are 'aware' of autism.  Awareness is not the problem.

The problem is the endless negativity.  The problem is the organisations that see us as a tragedy, a disaster, a destroyer of lives.  The problem is the charities that promote the idea that we are all incompetent, all drains on the economy, all lacking in empathy  "Are you Autism Aware?  Give us your money and we can stop these tragedies destroying humanity!" 

We have seen such powerful research recently about the sheer number of autistic people who choose to end their own lives.  They do so after a lifetime of hearing how much of a 'burden' they are to everyone.  How much of a disappointment that they were born different to others.  How much of a waste of space they are, compared to others.

We have also seen such powerful research this week into how much empathy autistic people have.  How much we hate hurting others.  How moral we are, compared to others, on average.

So, we need to stop this nonsense. Fast.  It is horrible.  Just horrible.

Every single autistic person is a wonderful and much loved person, with their own gifts to bring to the world.  No, I don't mean 'amazing skill sets'.  I mean gifts.   The gift of being ourselves. The gift of people learning about themselves, through their relationship with us.  The gift of love, of friendship, of sharing life together on this planet.

Look at your autistic family members, friends and colleagues, and affirm that humanity.
Please don't support cure-organisations that ask you to wear a lot of blue.  We don't want you to wear blue.  It is a colour of hate for so many of us, because of what it has represented. 

God loves us all, very much.   Just as we are. 

Saturday 26 March 2016

Shutdown: Autism's hidden majority

"Autism.  It's all about meltdowns, isn't it?  You know, boys who hit and punch and bite?"

"Autism in girls and women?  Oh they're the worst.  There's not nearly as many girls as boys with it, but their behaviour is way more extreme."

Professionals like me spend a lot of our lives explaining realities.  Neither of the two statements above is true.  Yet, so many people think that they are.  Even people working with autistic individuals, sometimes.

One of the big online autism communities asked its members whether they mostly experienced meltdowns (like a temper tantrum to look at, but never used to manipulate others - and never in the person's control).  Or whether they mostly had shutdowns (where they can't move/talk/think, feel really disorientated and then really exhausted, etc).

70% said they always or nearly always had shutdowns, not meltdowns.

I asked all sorts of autistic colleagues and friends.  Some with 'classic autism', some with other sorts.  Nearly all of them said they always, or nearly always, had shutdowns, not meltdowns.

In particular, the females I asked nearly all had shutdowns.

What's a shutdown like?  I can explain mine.  If you put me under intense social and sensory stress, my brain starts to feel disorientated.  I lose the ability to talk. I can sometimes write, though that ability gets very erratic the worse it becomes.  I lose the ability to work out how to look after myself, or get myself home in busy streets.  There is a sensation of great internal brain-pain/fuzziness.  Things can look weirdly big/small when it's happening.  Afterwards, I'm totally exhausted and need to recover for a good hour and a half, often longer.  It's not in my control, at all.  I'm reminded of epilepsy 'less than a full seizure' type events, and what friends who live with epilepsy say about their own experiences going into, and out of, such events.  Very similar. 

It may be quite rare for autistic people of any age to only have meltdowns.
It may be quite common for a lot of autistic people to never have meltdowns.

It seems that a huge number of autistic people have shutdowns.

What do we know about shutdowns?  Pretty much nothing.  I've searched high and low for good research on them.  Nothing. 

What happens to people who 'shut down' instead of 'kick off'?  Nothing, really. Apart from people thinking we are very rude for not talking or not joining in.  No diagnosis for us, because we're not creating much difficulty for others.

Various colleagues ask, "Where are the missing autistic women?".  I think the answer to that is simple.  We're looking for girls whose behaviour is extreme. There was a good study done that showed that girls with an autism diagnosis only got it because their behaviour was extreme.  More extreme than the boys.  It had to be that extreme before anyone took it seriously.

And yet, if you look in the diagnostic lists, violent behaviour isn't even one of the diagnostic tick-boxes.  Autism is nothing to do with being naturally violent.  At all.  I've said it before and I'll keep saying it.  It's really not.   A few become violent because of extreme fear.  A few become violent because of extreme pain.  Some become violent because of other conditions that aren't autism.   Most are never violent.   Most are extremely peaceful people who wouldn't hurt a proverbial fly.

I suspect most females on the autism spectrum experience shutdown rather than meltdown.  I suspect they never get diagnosed as children, and end up in a heck of a situation.  No help, no support, no accommodations.  Judgement, isolation and ridicule aplenty, though.  No wonder so many autistic women get a late diagnosis.  One that happens after they develop eating disorders, anxiety, depression, self harm and a host of other stress-and-fear related things. The same will be true for many males who experience just shutdown too, I'm sure.

We need to look at shutdown, professional colleagues.  We need it researched. We need it recognised, and we need people trained to ask about it.

Thank you for listening.


Thursday 24 March 2016

The A Word - BBC Drama

There's a peril to commenting on commentary, isn't there.
I'll do it anyway.

I've seen lots of commentary written by well known people, talking about The A Word, a drama on BBC this week.   It's about a boy and his autism spectrum diagnosis.  Or rather, it isn't.  It's about the whole family and their behaviour, with plenty of TV drama about things entirely other than autism.

For me, as an autistic adult, with an autistic family, I enjoyed it tremendously.  Even though it was personally hard to watch.  I've been that child who struggles to join in with the parties and events.  And I know how awful it is to be left out.  It just looks like we don't know and don't care.  Inside, it is heartbreaking.

I've seen criticism that it did not show 'Real Autism'.  In other words the 1 in perhaps 50 of us who is non-verbal and living in a care home setting because of extreme distress behaviours.

I've seen criticism that the diagnostic process was 'too easy'.  That it did not reflect the 2-8 year battles that so many parents and carers are put through.

I've seen criticism that the child didn't have a proper meltdown like 'real autistic people' do.

I've seen criticism that he knew the words of a lot of songs and "only 5% of autistic people have that savant ability". 

Just some highlights of the criticisms.

Well, it's certainly extremely important that those who are autistic, and have profound distress behaviours, are given excellent support.  It's also important that their families are given excellent support.  It's important that every one of us has that excellent support.  It's why people like me spend so much time training, and advising, across the country, when we're not doing our full time day jobs.  Because then, you enable many us to use our passionate interests to do what we do best; help society thrive, learn and be safe.

But the sort of autism we saw in that programme is as real as that 'care home setting' sort.  And a lot more common.   That's the exact difficulty many of us have in being taken seriously, and why the drama was a powerful one.  Because he was making eye contact, could speak, etc.  Because people think that's not 'real autism'.

And, because he had a shutdown, not a meltdown.

70% of autistic overload-events are shutdowns, not meltdowns.  Many of us do not have 'meltdowns' at all.  We are thus missed from prompt diagnosis, supports, accommodations and everything else.  We shut down.  We simply stop.  It may involve becoming non-verbal.  It may involve becoming immobile.  It may involve lying down on the floor for a while, totally still.  It is totally unspectacular to look at.  It doesn't get us diagnoses, because it doesn't bother other people.  A bit like only diagnosing Blind people as Blind if they are also violent.  Would that make sense?  "Ooo, she's not really Blind; she hasn't hit anyone repeatedly!"

So,...shutdowns....inside, it is searing fear and pain.  Terrifying lack of ability to process what's happening around us.  Our brains have reached 'super-hot' inside and have switched off most functions.  We are unable to defend ourselves, unable to explain ourselves.  Unable to speak. Unable to move.  Trapped.  Afraid.  Exhausted.  And, on the surface, no-one can see a thing. 

So I'm glad they showed a shutdown, not a meltdown, because goodness me we need to know about this.  And we need to respect it as much as we do with meltdowns - whose internal feelings are no different to shutdown for the autistic individuals.

As for his knowledge of songs, I strongly challenge the "only 5% of autistic people have savant ability" idea.   I know a few hundred autistic people.  I've worked in the autism world for decades.  Frankly, nearly all of them become specialists in memorising data that is of immense passionate interest.  Whether it's music, rhythm, pattern, word based, drawing based or otherwise.    That we don't recognise this is a worry to me.  Perhaps we're only looking for 'magic tricks'.  People who have not only that amazing internal database, but who can display it in ways that entertain the public.  Many do not ever choose to entertain others.  We're not entertainment.  The things become so private that no-one knows about them.  Not least because some therapies will take our passionate interests away from us, if we declare them, and use them to force us to behave non-autistically.  Well, yes, they do.  Go check it out.

So far, I like this drama.  It's not meant to be an autism study, but they've shown a sort of autism that few realise exists.  Yes, it's a young lad and many wish we'd had a girl in there - but perhaps we will in weeks or series to come.

Well done, BBC.

PS declaring an interest:  I also do some work as a consultant for the BBC on autism access, with a lovely team.  Not on this programme, though.

Sunday 20 March 2016

16 years of lost life: Autism and How Systems Fail Us

The average autistic adult will die 16 years earlier than non-autistic people.

The report, and the science paper, are not easy reading.  They won't be easy reading for some Professionals who have told us to 'just pull ourselves together'. 

They won't be easy reading for some in some faith groups who have told us we're just a nuisance. 
They won't be easy reading for some education professionals who assume that they are wasting precious resources on some silly behavioural thing. 
They won't be easy reading for some partners of autistic adults, who assume that their partner is 'just being awkward'. 
Nor for some Doctors who treat our needs as irrelevant afterthoughts.

And, most of all, they won't be easy reading for some in charge of disability benefits, who see autism and its needs as deserving nothing.  "Doesn't fit into the criteria we invented - therefore there is no need".  People who invent systems so buildings so inaccessible...that many autistic people cannot begin to even apply for the benefits.

16 years of lost life.

16 years....

Autistic people who, in absolute despair, commit suicide in numbers vastly greater than non-autistic people.
Autistic people who, often in great pain, cannot access healthcare, and die from preventable illness.
Autistic people who are misdiagnosed with psychiatric conditions we don't have, and given inappropriate medications.   It's not a mental health condition.  Though, goodness me, enough years of pain and loneliness and bullying, and many end up with anxiety and depression anyway.
Autistic people who cannot access supermarkets safely, thanks to sensory pain, to buy appropriate foods, even if they can afford to buy them.
Autistic people who are left without shelter, warmth, friendship, relationships and love, by a society that too often wants to see autism as 'nothing but an attitude problem'.  Or sometimes as a joke.  Or a 'danger'.  The reality is that the vast majority of us are victims of crime, not criminals.
Autistic people who are left without employment, by employers who don't want to bother with cheap, simple ways to let us access their buildings.  The poverty that results.

Goodness me, what have we done?

What have we done to these most wonderful, quirky, honest, loyal individuals?  What have we done to our friends?  To people often bringing such dedication, such passionate carefulness to work and life?

I have lost track of how much dismissal I've encountered over the years, as a professional working with autism.  How much belittling of need.  How much desire to disbelieve whatever we say, and minimise what we say is important.  "Oh the only thing really important is your social skills.  You must mimic our social skill set at all times".  Really?
How much talking over us, and leaving us out of discussions... and assuming that people with an MA in the subject from 20 years ago know more than actual autistic experts.

And here we have the end result.  All that non-autistic expertise, decades...and they have only just discovered that we were dying on average 16 years too soon.

Where are the older autistic people, I'm often asked? 

They are mostly dead, it seems.

I suggest we do better.  Together.  Listening together.  Working together,  Respecting one another, together.

Because no more autistic lives should be cut short, after brutal and cruel years of loneliness, bullying and poverty

No more. 

Friday 18 March 2016

Jesus and his friend Nicodemus: Autism in the Bible?

I'm sometimes asked if there are autistic people in the Bible.
We don't know for sure, of course.  Autism, as a diagnosis, has been with us less than 100 years.  But it has always been with us, from what we can see of genetics and accounts of behaviour.

Let us look at Nicodemus.  He appears three times in the Gospel of John, in Chapter 3, 7 & 19.

When we first encounter him, we learn that he approached Jesus in the quiet of night.  He needed to talk to Jesus alone about what Jesus was teaching.  Nicodemus was a well respected Jewish leader, who would have known every word of the rules and regulations of that faith.  He didn't understand Jesus's sayings about 'being born again', and took it really literally.  Born again?  That's impossible!  Baffled.  I'd be the same.  Not scorn or low intelligence.  Seemingly a brain that thinks literally, and often (for many of us) mostly in pictures.

So, Nicodemus needs to learn something new in a low-sensory, low-social environment.  Really keen on rules.  Can't understand strange expressions without a lot of explanation.  Hmm, where have we seen things like that before...

When we next encounter Nicodemus in Chapter 7, he's getting out the rule book to try to defend Jesus.   Solving things by reference to rules, not non-autistic social-skill persuasion.  Sounding familiar?  

In Chapter 19, Nicodemus is there after Jesus's death, at the tomb, staggering up the hill with around 75 lbs of herbs & spices for fragrancing the tomb and body.  Most people would have brought a small bag of the stuff.  One suspects he's committing a bit of a non-autistic social faux-pas here...and I'm imagining the astonishment/annoyance of the others, with their handful of herbs.  Ooops.  But what a gesture of love, in autistic culture.

For a long time, we've assumed that Nicodemus was an example of what Jesus disliked. An example of the ridiculousness of the 'old faith'.   I think we've had that very wrong.  Nicodemus was, as far as I can tell, an autistic friend to Jesus.  Not cured, not pitied.  Someone who stood by Jesus in ways that honoured autistic culture and autistic ways of expression, right to the end.   Loyalty - another 'hallmark' of autism.

So, next time anyone describes autistic people as too much trouble/cost for us to include, something to 'cure' with prayer...I would encourage them to think about how inclusive Jesus was with his autistic friend, a friend who spent quite a bit of time helping Jesus, not being helped.  A friend he trusted to still lead, still be there, as himself. 

I see a lot of places praying for a 'cure' for autism. But most autistic people do not want one.  A typical huge poll result, below. Same spread of answers for autistic people who are non-verbal, or who have a learning disability.  For most of us, autism is who we are, in the same way as we are (say) 5ft 6 or have size 7 feet.

Perhaps we need to think again about our understanding of why autistic people are created by God.  Very much part of the world, bringing honesty, dedication, clarity, focus, creativity and shared journeying alongside others.  And very much part of that One Body of Christ.


Friday 11 March 2016

Autism: Eye Contact. And why it is different, not in need of fixing.

Imagine you have a young friend who is Blind.
How offended are you that they don't make eye contact with you?
Imagine you have a young friend who is autistic.

How offended are you that they don't make eye contact with you?

Neither young person is being disrespectful.

Even as an adult, I find eye contact painful and exhausting.

I'm going to generalise.  There may be some autistic people who enjoy eye contact.  I've just not met them yet.

The best explanation I had was from a Professor a few years ago.  He said that in our brains, eye contact is wired directly into the 'Is this a predator about to eat me' alarm-bell-centre.  The moment we stare into human eyes, it's like being three feet away from a hungry tiger with an attitude problem.  No, it's not paranoia.  It's different brain wiring.  What would your reaction be if faced with that tiger?  Fancy talking about the weather, or are you going to freeze in panic, or run like heck?

Well, that's our brain's reaction when faced with staring eyes from a human.  No, we can't just decide to have a different attitude, any more than you could with the tiger.   Our brain is using the tiger-response-wiring.  That's the brain design.  Once you stop looking into our eyes, we can relax with you.  Generalising.

I see just fine out of peripheral (side) vision.  When I'm with friends and family who really know me, I can sit side by side with them, and have the most wonderful conversation.  Same as you would if you were driving and there was a passenger in the car with you.  You don't have to make eye contact.  Same as if you are speaking on a telephone.  You don't have to make eye contact.

Worse still, if I am making eye contact, I can't hear.  It's one or the other. Which do you want? So many teachers insisted on eye contact.  I could then not hear a word they were teaching me.  What a pointless waste of their time and mine.

I will sometimes appear to be making eye contact. I've taken my glasses off. I can't see you.  That's a compromise.

What happens if people train us to make exhausting, painful eye contact anyway?  Well, it gives us a clear message that our pain and exhaustion means nothing to them.  In their view, they are the only important person in the room.  (Remind me which group is supposed to lack empathy...)

Forcing or bribing us to make painful eye contact?  That's not a social interaction out of genuine friendship, that's a power game. 

And, even if someone teaches me to stare at eyes, I cannot use eye contact meaningfully.  I cannot see what the eye contact messages mean.  I cannot use my own eye contact to 'mean something' either.    The effect is spooky, offputting, a bit scary for people.     It doesn't work.  It doesn't get us extra friends.  It doesn't get us anything at all.  Other people have brains that decode eye contact with lightning speed.  They can spot tiny changes in pupil size in the eye.  Tiny movements.  Tiny muscle changes in the eyelids, Tiny movements of eyebrows.  All automatically decoded and responded to.  It's an amazing communication system.   They can spot a 'fake eye contact' automatically.  All we can do is fake it. Our brains generally do not have any of those automatic eye-contact-decoding bits.  So it's a ridiculous thing to ask us to do.  In exactly the same way as it's ridiculous to ask a Blind friend to do it.

We are not broken versions of you that can be fixed by making us do painful things.  We are different, and we communicate differently.  We still value you.  We still want to be friends.  We do not hate you or find you boring, just because our eyes work differently.  We are not being lazy or rude, or 'shifty' by looking elsewhere.  Our lives are not going to be better by training us to look at your eyes.  At all.  It hurts.  Don't keep asking us to do painful things because you feel better if we do.  If I'm in a room with you and chatting with you, you are valued. 

Respect us, by being relaxed about eye contact. Let us decide where to look and when, and don't make a big thing about it.  If you are uncomfortable about the lack of eye contact, own your own problem.  Don't force us to be your solution.

Thank you for listening.

Sunday 6 March 2016

Positive Behaviour Support Questions

Updated 2018.

I have some very serious questions about 'Positive Behaviour Support'.
This is my own set of questions, and not representative of any organisation with whom I work.
A concerning number of care providers in the UK are using it.
It's a form of Applied Behaviour Analysis ('ABA').  Yes, an adapted form.  But it is ABA based.  A later blog of mine looks at the evidence that PBS is the new way of describing ABA. 

The Centre in the South East is a main training centre for this, and its standard reading list has plenty of ABA books and methods.  It's fair to say that ABA is very controversial, in the autism communities.  It's also fair to say that recent research (2017, 2018) shows links to suicide and to PTSD.

I've heard some arguments for Positive Behaviour Support, which I'll refer to now as PBS.
One says, "Well, the alternative to sorting out 'challenging behaviour' is chemicals and nasty restraint and violence, so obviously this is better.  And because it doesn't use electric shock treatments and exhaustion to get compliance, it's much much better".

I think that's a false argument.  On so many levels.  For a start, there is no evidence that PBS is 'better' than other arguably-more-respectful approaches.   So telling people it's this,  or abusive therapies...well, that's wrong.  There are lots of choices of approach available. Good knowledge of autism, working with autistic professionals and well trained Occupational Therapists for example.   Not just PBS.  In fact, for the vast majority of autistic people, no therapeutic approaches have ever been needed.  So, what do we do when we have an individual who is in a care home setting?  How do we decide what help is appropriate?

PBS, like ABA, chooses what to define as a 'challenging behaviour'.  For autistic people, it turns out that almost all our natural behaviours are 'challenging', curiously

More curiously, it's our natural autistic communication  that has to be silenced the most, it seems.  A bit like defining British Sign Language as 'challenging behaviour',  and silencing those strange flapping hands that do nothing useful (for non-sign language users).  Autistic people communicate differently, and have a different sensory experience.  This is the reason for our differences.

We actually did force Deaf people to communicate using spoken words.  It's now regarded as abusive to force that on people against their will.  
I'm concerned by things I see very regularly as a professional, from PBS Practitioners.  Definitions of autistic 'challenging behaviour' which include...

Asking repeated questions?  Challenging behaviour.  Is it?

Rocking?  Challenging behaviour.  Is it?
Flapping?  Challenging behaviour.  Is it?
Wanting to focus on one item?  Challenging behaviour.  Is it?
Wanting to get away from sensory pain or social-overload pain?  Challenging behaviour. Is it?

And then, PBS teams with 'highly qualified experts' analyse and record this alleged-challenging-behaviour, endlessly.  Following the person relentlessly, day after day, without their consent.  Some would call that stalking, but if you're autistic, it gets framed as 'therapy'.

Then, some teams set about using manipulations and psychology to get the person to..

Stop asking in non-approved ways
Stop moving in non-approved ways
Sometimes put up with sensory pain at all costs.  Well, costs to the autistic person, anyway.  Not to the team.  Most PBS analyses I've seen do not even mention sensory difficulties for the person.  No-one has even done a sensory audit of their care home settings.  Non-autistic people are just guessing at it, because, obviously, that's better.  Is it?

I've sat in rooms with PBS trained teams and asked them what they did to prepare for the meeting with me, as an autistic person.  Nothing, they'll say.  No thought for environment, no thought for communication differences.  No thought for walking in drenched with perfume or aftershave, sitting me in a room filled with flickering fluorescent lighting.  Irrelevant, because they are trained to manage my behaviour.  Except, they're not.  They've been taught a nonsense about autism, and slavishly follow the rule set.  Even if the person is deeply damaged as a result, unfortunately.  Even if the person is nearly starved to death to get them to 'comply'.  I've seen that too.  Yes, not all PBS practitioners are that bad, but the low level damage is yet to be quantified.

Hey, we've reduced those alleged-Challenging-Behaviours by 60%.  Isn't that good,  they'll say.

No, arguably they have silenced an autistic person's natural communication and taught them that expressing pain isn't allowed.  It's not good. 

I'm all for any sensible, respectful way to reduce violence and injury.  Of course I am. 

And I'm all for any sensible, respectful way to give people a real sense of self-worth and community, enjoyment and useful skills.

But the behaviours that are identified as 'challenging' need to be actual dangerous ones, not a way to lie with statistics.  Not a way to silence people for being different.  Or turn them into poor versions of non-autistic people rather than real versions of themselves.

And, what worries me?  I can find no good large scale peer reviewed evidence of long term outcomes for autistic people.  In fact, all I can find is endless non-autistic specialists telling me what's good for us.  Doing things to us, and declaring that it's much better for us now.  Is it? So where are the autistic adults promoting this stuff?  There's a million of us.  Why the silence from us all?  We've asked for some of the autistic people who've enjoyed ABA and PBS to tell us about it, and the silence is deafening.

I worry about this kind of compliance-training.  One of the 'challenging behaviours' that are to be extinguished?  Non-compliance.  I'm reading the PBS papers right now, telling teams how to deal with non-compliance.

You see, if a non-autistic person tells me to do something, I've got to do it, apparently.  Good luck with that...

They are the masters, I'm the slave.  See?   Really 'nice' masters, they allege, but masters.   They know what's good for me, and I don't.   "Comply.  Or we will make you comply by analysing why you don't, and finding out how to coerce you into doing so.  Without violence, so that's OK.  You agree that you don't want violence, yes, so this is better, yes?  Good.  I'm glad you agree.  See, all our residents agree they really like this approach" 

Do they?  Do they even know there are alternatives?  For sure it's better than being hit, yes. What a choice.

So, how does that compliance-training work when it's a predator, targeting (for example) an autistic woman in a care home?   Train the person to comply with all demands, always, from any non-autistic person...and...? 

It doesn't take a genius to spot some very serious safeguarding questions about PBS.  Right now, there's a lot of silence.  I've tried talking about this with some of the organisations who promote charities who use PBS on people.  They seem reluctant to engage with me, or with other autistic professionals.

As thankful as I am for the marvellous care workers who are genuine friends to so many autistic people living in care communities.... I'd like some answers about why PBS is suddenly seen as the Only Possible Answer.

Good marketing, for sure.  Yes, arguably better than an extreme example of violence or a 'chemical cosh'.  But...if I was spending £500k a year as a Local Authority, I'd want more than marketing spin and possibly-invented-criteria-and-statistics to back it up.

Learn about autism, and why we do things.  It's not to be 'challenging'.  .  Ask autistic people to visit such places and comment usefully on what's being done.  When you visit, ask to speak to the autistic specialists doing the sensory audit assessments for them.  And the autistic residents.  Yes, they can communicate.  Perhaps not in the same spoken language of others.  But we can.  So, ask in a way that makes sense...and wait for a response. 

Ask those good questions.  And spend your money wisely.  Because autistic people are on average less violent than others, less likely to commit criminal acts.  On average, more dedicated to helping people and improving society.  More loyal, more passionate about specialist areas.  In fact, absolutely wonderful, in the main.

Why it's been reduced to a list of deficits, with some making endless money out of it is not yet clear.

Thank you for listening to my questions. Good luck finding some answers.

Friday 4 March 2016

Autism and Sometimes Non-Verbal and Telephone Call Centres

One of the strangest myths about autism is around speech.

In Ye Olden Days, 'autism' was believed to always mean a speech delay as a young child.  Then, usually the assumption that the person would never speak.

In the DSM V diagnostic checklist, speech & language issues are a separate thing from autism, now.

Some of us started off not being able to use speech for conversation, but gradually learned the art.  It's not fixed forever.  Most 'non verbal' autistic people do speak, eventually. Many on the autism spectrum have been able to speak well from an early age.  Some are 'hyperlexic' - amazing ability with words.  Our fab son, for example, broke the computer program that was analysing his language abilities when he was in his mid teens.  His verbal ability in that test was 'off the scale'. Yet, as a young child, he could hardly use language.  It's a real variable, in autism.

But, it is true that most autistic people do have difficulties decoding and using some sorts of language.  Strange expressions like, "Back in five minutes", for example.  Big clue - it doesn't mean what it says.  No, I don't know why.  Also expressions like, "Elvis has left the building!".  There isn't someone called Elvis who has just left.  I've checked this.  It seems it means, "This event has stopped".

Apparently, we are often told, either you can speak really well, or you can't speak at all.  Those are the only two states that are talked about in autism.  All or nothing.
The funny thing is that autistic people are often told that we have 'black and white/all or nothing thinking'.  It seems those diagnosing and working with us are equally affected by this!

Many of us can speak sometimes.
And other times, we cannot speak.

We are sometimes non-verbal.  Why do we not hear more about this probable majority of us?

I'm sometimes non-verbal.  For a businessperson, presenter and adviser, this isn't handy.  I can't afford situations where I go to speak, and nothing happens.  It's disempowering, embarrassing, exhausting, and potentially dangerous.  And there is nothing much I can do about it, other than try to balance my brain's internal heat.

A reminder for readers; autism appears to come with a brain design that literally overheats inside, if faced with too much sensory/social overload and too many dilemmas. It then has to cool the wiring back down again before it 'comes back online'.

How does it feel when it happens?   I can picture what I want to say.  I think in pictures, not words.   I can then imagine which words are appropriate.  But, I cannot then turn that into speech.  Nothing happens.  The mechanism in my brain that does that has switched itself off, to wait for that bit to cool down.  Ever had one of those dreams at night where you can't move?  Even if you want to?  It's like that.  Pretty scary.  Not even in an emergency can I then say something.   I can usually still type, though.   Social media, and assistive technology, is a blessing when it happens.  If I need to say something, I can type it.  Not always well, but it'll get some info out.

Except some situations demand the use of the phone.

Unexpected phone calls are scary things for many autistic people.  For all sorts of reasons.  Others everywhere on the internet will talk about this too.  We have no idea what we are about to be asked.  Then we have to improvise a good response.  I can, on a good day, chat on the phone for a while to an unexpected caller.   A lot of what I say is 'social gambits'.  Learned responses.  Automated phrases, if you like.  I can do telephone answering in a reception-capacity for businesses because it's the same thing every time.  That's easy.

But what if it isn't the same thing?  "Just ring this call centre and they will ask you all sorts of randomly-picked security questions and then give you all sorts of random instructions".  Better still, there will be 5 options to choose first, then an automated 'say your name after the tone', then another 5 options to remember, then another 4 options, then another 5 options, then 'now put in this 20 digit number, your date of birth, your inside leg measurement, the age of your grandmother's cat..."  I may have made up the last two.   And, of course, 15 minutes of hold-music with random, "Your call is important to us" messages.   All the time, my brain is trying to recall which words to use when the call starts.   Not yet...still not yet....nope, not yet....

Then I'm put through to someone I can barely hear...and... I can't speak.  My brain has now been running on maximum heat for that 20 mins and it's out of heating-capacity.  It has probably switched off its speech.


"Oh nearly all our customers love dealing with telephone support".  Like heck they do.  I doubt it's just autistic people who fear and loathe impersonal call centres.  But, for autistic people, what do I say to a random person at the other end about my needs?  Someone who has no idea I'm autistic - and probably no idea how to make it simple and straightforward for me.  It's a nightmare, even if I can speak at the time.

"Well, you can write a letter".  Hmm.  Yes.  And then post it.  "No you can't scan it and email it - we need the original to prove it was really you".  If it gets there, that's probably a three or four day delay. If it gets there at all.  I could pay a lot of money to ensure delivery, yes. When it's something time-sensitive around money, that's not handy. A worse, slower and more expensive service than non-disabled customers get.

So, good people of the internet.  Are you insisting that your autistic customers only use a telephone based service, because it's 'better for them'.  Well, it probably isn't.  Ask. And offer the support we need.  It could be as many as 1 in 30 of your customers.

Thank you for listening.