Sunday, 15 March 2020

Coronavirus, Autistic Patients and Hospital. Top Tips for Teams


1 in 30 of your Coronavirus Covid-19 patients is likely to be autistic. That's the number of autistic people in the population.  It's a lot.  How you enable their care will make a big difference to outcome.  Ideas have to be doable.  After all, you have a lot of patients.  So, here's some fast tips.

Above, how a medical room looks to me, as an autistic patient.  A personal example. Blinding.  The strobe-light effect from fluorescent overhead lighting, which some of us experience.  The stench of medical chemicals.  The utterly deafening background noise.  The awful pain of medical examinations, thanks to a different pain and sensory system.

Autistic people may need some stuff to happen, to help raise chances of a good recovery.  None of it is hard, and all of it may help others too.  Remember that autistic people are of all ages & backgrounds, genders and IQs, & may do any job, including healthcare roles. 

Here we go:


1.  Look for info.  From the person. (Most of us can talk, though of course in an emergency with this virus, maybe not).  From a loved one in their life, or a carer if they are one of the small number in care services.  An Autism Hospital Passport, e.g. at 
https://www.autism.org.uk/about/health/hospital-passport.aspx or maybe an autism ID card with handy hints on it.  If they cannot complete the form, can a relative help with this, perhaps?  Put the form somewhere where teams can glance at it for ideas, often.

2. Check whether they use noise cancelling headphones, or sunglasses to cut down on background noise and glare.  These make such a difference to many. Keep glare from overhead lights out of their eyes where you can.

3.  Be really clear.  None of this "I'll be back in five minutes", when you actually mean, "I've no idea at all when I'll be back, but it may be between 2 and 20 minutes".  That will cause huge anxiety.  Say what you mean.  Exactly what you mean.  Calm, clear, short, accurate statements.

4. Be gentle, wherever possible.  We're not joking when we say something hurts, or when we scream in pain.  Quite a few have hypermobility syndromes that can impact on joint pain levels etc.  Using an oxygen mask?  It may help to cushion or smooth the edges in some safe way, to take away the feel of something stabbing the skin.  Be aware that some won't know how much pain they are in, so a standard pain scale may not have meaning.  Collaborate with them and with carers to get best answers.

5.  Also be mindful that our bodies can give useless feedback on how we are.  Made worse by a lifetime of some being trained to always say we're fine.  Use your medical skill. Check it out, using whatever quick, gentle tests you have to hand.


6.  Many of us use repetitive sound or movement, especially when stressed.  Might look strange, but it's a good coping mechanism.  Don't try to prevent it unless it's clearly dangerous for us to be doing whatever it is.

7. Do allow items of comfort and meaning to be left with us, wherever possible.  Or, if possible, additional visits or contact somehow from a loved one (where that can be made safe).

8. We're already likely to be desperately short of sleep.  Anything you can do to encourage rest, in a quieter area, with lower light levels, is going to really help.


9.  Quite a few will respond to the pain of rough hospital gowns by trying to take them off.  It's similar to you being forced to wear barbed wire or sandpaper.  Got anything that isn't rough to the touch?

10.  Allow thinking time for questions, if the person is able to respond.  And try where possible to keep to the same team around that person, so they get used to communication and subtle signs of difficulty.

Lots of the autistic - led organisations can provide background help and support.  Reach out to them.

And thank you for being on that front line, putting your own life and health on the line to help others.

It's truly appreciated.

Thursday, 20 February 2020

Why The Right Info Matters

Image of paper cut-outs in different colours, each the shape of a person
It matters that we know how many autistic people there are.
It matters that we know which proportions of them are living in (for example) independently, or with family, or in care homes, or in community with some support.
It matters that we know how many are working, or parents, or carers, or students, or retired, or in need of particular care.

It matters that we know how many of them may also have a learning disability.  How many may also have ADHD.  How many may also have epilepsy, or anxiety, or depression, etc.  How many may need alternative communication methods.  How many need adapted buildings, and what generally helps.

In times of misinformation, where anyone can take to social media and publish nonsense in a few seconds, it matters even more that the info is right.


Governments plan, using that info.
Budgets are set, using that info.
Staff are hired and trained, and sent out to do work, using that info.

Charities can plan services around the numbers of people, confident that they have reliable information for funders and for their needs.

Autistic people can begin to feel confident that there's a good general understanding of how many of us there, and what sort of things we might need.


Of course, every actual service for an individual is about meeting that person's own needs, and that will vary.  I absolutely agree with that.

But, it would matter a lot if (for example) a school had 35 wheelchair users in its building, and only one accessible loo for use in break times. 

It would matter a lot if someone was organising training for learning disability nurses, and none of them were told of the number of people in care settings who are also autistic (or likely to be, but not diagnosed yet), How could they get trained on autism if their management doesn't even know it's a need?


It matters.

The right information also saves lives:

Autistic people can be put into painful, exhausting, terrifying brain events time after time, day after day, by services and environments that are wrong for them.  Fluorescent flickering lighting, air conditioning that shrieks at a frequency that makes a room deafening, staff who turn up drenched in perfumes or aftershaves.  I've lost count of the number of times staff have said to me, "We didn't know we were likely to have any autistic people in this service.  We never planned for it.  It is important?  It's just a bit of extra difference, sort of a different personality, likes routine, yes? We can deal with that with no special training, and they'll be fine in the same places as everyone else in the service, honest." (Paraphrased).

The end result is too often those brain events leading to distress behaviour, injury, sometimes death.  Brain events appear linked to forms of epilepsy, and that is a significant cause of death for autistic people.  It matters that services don't know, and can't plan properly.


We also have a whole multi-£million project set up to solve the 'problem' of the alleged vast numbers of autistic people who are allegedly utterly nonfunctional, and allegedly all costing society over £1 million each.  We see paper after paper declaring how those fabricated numbers mean it's better for society that we're no longer here, as society cannot possibly afford that alleged financial burden.  How it was unreasonable to expect society to provide extensive care for that many. That pre-birth choices could be invented which will  mean parents never need face the alleged horror of a child who (they are told) is certain to need a lifetime of extensive and expensive care, a lifetime in nappies, unable to speak (that's something I've been told repeatedly over many years...).  It's utterly horrifying stuff, such finance-based-eugenics-talk. It's resulted in very real discussions about how to erase autistic people entirely.   It came from misleading information, repeated often. 

Interestingly, when I did some background work on how many people are incontinent, the figure for autism wasn't really any different to the figure for the rest of people...but that's another story...

I campaign hard for the equality and worth of every single human being.  I won't have eugenicist policies. Not for autism or anything else. I don't want society going down that path again, ever.  But there are others who have no problems at all in viewing people as working-units and saying that if you can't earn X, you're a useless blob who should be erased.  Not quite in those words, but that's the underlying message.  It denies the full humanity of so many people, every single one a precious and loved person.

So, the numbers matter.  They matter for getting the right structure in to support people as and when they need it. And they matter in a discussion about eugenics and the future of humanity.  We've already seen too many very wonderful lives extinguished because of near-hysteria over 'cost to society'.   Research Down's Syndrome, if you want more info on that.


We can do two things:
Bring to light the full humanity, the full wonderfulness of every human being. 
And make sure that people have information that is based on accuracy, not hate, guesswork, ancient data or political spin.  Then we can make sure services have the right provision and training, in which they can tailor person-centred support that works.

Sunday, 16 February 2020

Belonging

photo from above a meal table. Various diverse people and sitting round it, eating and drinking, sharing fun together

Do autistic people belong, in your group?
Where do you feel like you belong?  Is it at home, with loved ones?  At a gathering, with good friends?  At an event, where you're fully part of the team, respected and valued?

There's all sorts of responses to autistic people, and it's so good to be part of a world where many have moved far from the 1940s thinking.

We've always belonged.
We've always been part of society.  Everywhere you look in old literature, from the Bible onwards, you can see people describing autistic individuals.  They just didn't need a separate word for it.  People usually with honesty and integrity, but a different way of interacting, socially.  People who thrive on routine, much as the Religious communities, schools, hospitals, and so many other places still do.  People unafraid to challenge, to stand up for social justice, and to keep saying it until it happens.   People watching for danger, listening for those tiny sounds of approaching predators or the faintest smell of smoke from an approaching fire.  People dedicating their lives to crafts, music, art, farming, healthcare and so much more.

We're always belonged.

But society forgot it for long decades.

In that forgetting, autism became scapegoated. If something, anything, was bad, it was 'autistic'. We've had decades of being described as deficient, empathy-less, and so many other things that were deeply untrue and have caused immense harm.  It's been normalised to talk about us as if we're not in the room, not reading social media, not studying the academic papers detailing a long list of alleged deficits.  And yet, one by one, those alleged deficits have been proved wrong.  As have the alleged 'treatments' that were supposed to 'cure' us of the neurodiversity that is autism.  

https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html  refers.

At conferences, audiences are standing up against negative narratives.  https://annsautism.blogspot.com/2018/03/and-audience-said-no-pivotal-moment-in.html  (a blog that got some 40,000 readers interested - hurrah). 

So now, we're belonging, again.

We've re-found one another, in growing numbers.
Many are contributing and collaborating again, thanks to social media.
We're being re-respected for our skills and abilities. Much more to be done, for sure.

We're standing up against negativity that has done nothing but drive so many to disaster and death, including families fed a terrifying narrative that benefited no-one at all. "If you don't give you child this ridiculous pointless expensive thing by age 5, they're doomed!  Doomed, I tell you!  Hand me your money.  No, more money.  No, all the money...Evidence Based, Evidence Based!". Don't fall for it.  Ask for advice from autistic specialists, from Speech & Language Therapists with a specialism in autism, from Occupational Therapists who know how to improve autistic experiences.  From proper professionals who have your wonderful child's best interests truly at heart.

We're re-taking our place in a society that temporarily forgot our worth.

Belonging is something that all human beings share.
We are all of full worth.
We all bring our whole selves to the world.


Every person, autistic or not,  has their own set of things they need help with, things they need support with.  No-one is fully independent unless they're living alone on an island somewhere, knitting their own clothes and catching their own food. We rely on one another all the time, for so many things.  Look around you.  How many people are involved in lighting and heating your space, in providing transport, road and rails?  In making and growing your food?  In getting fresh water to your house, and putting drains in?  How many people do you rely on for company, for cheer, for shared collaboration, for work? Yet if autistic people need anything, it's framed as a 'cost to society'.  Isn't that odd?

Some autistic people need a lot of support, and absolutely should have that.  Support to thrive.  Medical treatment for any actual medical conditions that are making life difficult of course.  Support around any parents or carers who are providing love, effort and time. 

Most autistic people work, or volunteer, or are retired, or are parents/carers, or are in academic studies. We had no idea until very recently.

So many other autistic people are emerging from the shadows where they have been forced to hide for those long decades.

We belong.  So many of us work to make the world safer.

Let's do that together.

Saturday, 8 February 2020

Risk avoidance, and autistic professionals


Our Professional Practice is very keen indeed on equality, and on risk-avoidance.  Why equality?  Well, for a start, nearly half of autistic people are also part of the LGBT+ communities.  Some 10% are part of the BAME communities.  Not far off half are female.  1 in 30 of the population, in fact.   A brain diversity, not a disease or illness, as I'm sure you know. So much of the work I do nationally and internationally with organisations is around equality and diversity, working with people from all of those groups and more.

Like many Professional Practices in the UK, we recognise that prejudice is one of the biggest corporate risks out there.  A safe system is one that has all kinds of minds considering a situation. The least safe system is one that assumes that 'low risk' just happens to look like the nearest straight white man with an interest in rugby and Land Rovers, who reads the right-wing Press, votes right-wing, just happens to enjoy the same beers as the others in the same pub, and talks at a lot at events with lots of other men just like him. [Being clear that I've owned two Land Rovers, and son played national rugby...]

But I want to talk about a deeper form of risk-avoidance.

Those who follow the art world will know of the specialists who work in detecting fakes.  Using keen eyesight and extraordinary depth of knowledge, they can detect fakes that others miss.  Many of these experts are autistic.

Moving to the world of medicines, many of those who test data to ensure that medication really does do its job are autistic.


Moving to the world of accounting, many of those who are in the risk-management end of this, testing and analysing accounts for patterns, spotting errors, are autistic.

In the world of Detectives and Police, some of the very best they have are autistic (see National Police Autism Association for details).  That ability to spot the errors, to consider facts deeply and impartially, is a core strength in so many autistic professionals and allied trades.


In the world of Surveying, I was telling the Director of a large Bank about our track record, as a mixed team with considerable diversity.  Some 4000 complex pieces of work, requiring immense focus and dedication.  Error rate on values, nil.

But, society is used to seeing 'risk' around autism from the ancient set of myths.  Myths that we now know were mistakes.  But which are often touted in the popular right-wing press.  Myths around incompetence and so much more.  And those myths have caused deep damage to businesses across the UK.  I could be here for a fortnight relating how many autistic specialists I know who were removed from their post for whistleblowing on serious fraud or other lawbreaking they had noticed and reported in.   It's fair to say that very few of those companies are now in a good way, financially.  Oddly enough, the leaders seem to have pocketed vast sums and left the company in a perilous position.  How did that happen, eh?

By demonising autistic people, in good part.

By creating a culture where autistic focus is seen as 'obsession' and autistic honesty & genuinely different social communication protocols is seen as a 'lack of social skill'. Where ancient myths of lack of intelligence or 'angry behaviour' are still dragged out from the 1940s.

We live in a society in desperate need of all kinds of minds, all working together to ensure the best outcomes.  To ensure safety.  To ensure fairness.  To minimise risk.


If you have autistic specialists available to you, rejoice.  In fact, go out and get some.  Goodness me, if properly enabled, these are fantastic individuals who will produce that zero-error-rate decade after decade.

And if you are part of a whispering campaign around autistic 'deficit', with someone pointing to a multiply-disabled young lad with a learning difficulty and pretending that what's 'autism' is always about - do know you're being told some nonsense.

Thank you for reading.

Related reading:  
https://annsautism.blogspot.com/2020/01/1-in-30-professionals-is-autistic.html

Friday, 31 January 2020

Surviving Church of England Announcements


Goodness me.  What a couple of weeks as an external adviser to the Church of England and other faith groups.  I have worked with and alongside the church for more than two decades, in a variety of roles,  most recently in work with St Martin in the Fields, Inclusive Church, Rainbow Church, General Synod access project, and in authoring the guidelines for including autistic people fully in our churches.

So many of us are still reeling from the heartbreaking witness accounts re some Clergy and other leaders' behaviour in the CofE, as revealed in the IICSA proceedings.  So many young lives damaged irreparably.  Every young person precious beyond words, a loved member of society who deserved only the very best of safeguarding and care.

"The Church of England should have been a place which protected all children and supported victims and survivors. It failed to be so in its response to allegations against clergy and laity."  (
https://www.iicsa.org.uk/publications/investigation/anglican-chichester-peter-ball/executive-summary)

The Panorama show was the next excruciating stumble through cultural failings, predatory abuse and further hell. 
https://www.churchofengland.org/more/media-centre/news/response-bbc-2-documentary-peter-ball

We hear from some BAME members of the church that there is still racism.  https://www.telegraph.co.uk/news/2020/01/26/time-church-past-present-racism-say-clergy/

  "Too many BAME people still come up to me now and say of their parish churches, ‘They are happy for us to cook their food but don't want to see us sitting on the parish council or in positions of influence.”

We hear from women members of the church that there is still some resistance to their calling as Priests, long after the decision was first taken.  https://www.independent.co.uk/voices/women-vicars-church-sexism-religion-a8782501.html  
"We live in an environment that suggests we are perhaps “not quite” priests."

We hear from disabled and neurodivergent members of the church that too many of them are still treated as third class citizens, a burden or an object of pity, not equal participants at the banquet for all, as related by Jesus.  https://www.bbc.co.uk/news/uk-48054113 for example.


Another group?  LGBT+ individuals.  In January 2020, they and others have been slapped with a legalistic 'Statement', allegedly on behalf of all of the Bishops of the Church of England. 
 https://www.churchofengland.org/sites/default/files/2020-01/Civil%20Partnerships%20-%20Pastoral%20Guidance%202019%20%282%29.pdf

In it, the announcement that the only allowable place for sex is in a marriage of a man and a woman.  In the midst of careful diplomatic negotiations on this topic, it was the equivalent of dropping a boulder into the middle of the preparations for that heavenly banquet.  Crushed and bruised, the LGBT+ communities were joined by outraged and distressed people in Civil Partnerships between men and women, and by single parents, as the Statement implied that their parenting skills were at least an improvement on putting children in Institutions.  What an awful thing to say.  Imagine if you will being a single parent whose husband or wife abandoned you and the children, after years of nastiness towards you. There you are, doing your utmost for your wonderful children, bringing them up with dignity and respect...and the church considers you marginally better than putting the children in care....

I am one of some two million autistic people in the UK. Like many of us, I'm a Christian.  I've watched as my fellow autistic individuals have been described by some in church congregations and publications as dangers, burdens, rigidly behaved drains on the church economy, empathy-lacking monsters, a diplomatic nightmare, and worse.  Amongst us, nearly half of autistic people identify as part of the LGBT+ communities also.  And I have been delighted to note research paper after research paper disproving every single one of these statements of deficit, over and over.   Papers showing autistic integrity and honesty, empathy and love.  Papers showing the full worth and full humanity of autistic people.  A humanity and worth that is shared by every person on earth.  


I am glad to see apologies emerging for some of the behaviours outlined above, by some in some churches.  I am mindful of the many good people in our churches.  People who are horrified by prejudice and/or indifference from some.  Glad of the apology for tone and timing by some of the Bishops, but for sure we need people to acknowledge that the content fell far, far short of an answer of love and care.

What a nightmare. Especially for those who are multiply marginalised.  What of BAME autistic people?  What of LGBT women Priests?  What of disabled single parents?  How many collapse under the weight of judgement, in a church that seemingly cannot judge its own leaders.


Perhaps it has been too easy for some within the church to transfer onto any scapegoated group their own lack of empathy, their own lack of love, their own rigidity of rules and structures, their concerns about their own sexual behaviour? 

Perhaps there needs to be a deeper and wider reflection and prayerful humbleness.  Seeing
 within each person Jesus's image, the humanity and full worth of the person gazing back at us?  We all are followers.  We are all imperfect.  We all stumble and fall.  But we must never doubt that full humanity of one another.  Or the richness and faithfulness of loving, permanent relationship.  


If we can do that, we can each take our seat at that table, that beautiful, peaceful, joyful banquet of togetherness and purpose.   In safety, and in fellowship.



John 13:34-35

34 “A new command I give you: Love one another. As I have loved you, so you must love one another. 35 By this everyone will know that you are my disciples, if you love one another.”
Amen.



https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html for the latest research on autism.

Thursday, 23 January 2020

1 in 30 Professionals is Autistic?


Today, you're likely to have woken up in a home powered by electricity systems co-designed and run by autistic specialists.

You'll reach for your phone, probably co-designed and run by autistic specialists, and listen to music composed by and played by autistic musicians.

Getting into your car or the bus or train for your daily commute, you're sitting in something co-tested, co-designed and co-engineered by autistic people, with brakes that work because autistic people tested and tested those brakes as a design.  Seatbelts that work. Airbags that work.  You'll maybe cross some bridges that were designed and tested by autistic people, and casually glance at planes overhead, designed by autistic people, in flight paths which are overseen by autistic people, and whose pilots and air crews may well be autistic.

Making an appointment to see your GP, Opticians or Dentist, you'll be glad of the ~ 1 in 30 who are specialists, and autistic, bringing absolute excellence to their field.  


Taking some time out for lunch to visit a gallery, you'll pass by artworks by some of the leading autistic artists, sculptors and designers.  Passing by a school, autistic teachers who are bringing a depth of integrity and honesty to their work with the young people.

Thinking of putting your house or business premises on the market?  You might need the services of an autistic Accountant or Financial Adviser to work out the money side of things.  An autistic Surveyor to check diligently that the property you're buying is fit for purpose and worth the money.  An autistic  Lawyer to check the documentation does what it's meant to do, without error.  If anything goes wrong in your life, you might be relying on the amazing legal minds of autistic Police, Magistrates and Judges, with clarity, fairness and deep knowledge.

We've had decade after decade of pretence that autism always means young boys with low IQs and 'bad behaviour'.  Not only has research shown that to be untrue, it's also led to a devastating reality for autistic professionals.

We are expected to hide.

Want to know how many autistic professionals I know?  I couldn't begin to list them, the list is so long.  Each approaching me to say, (paraphrased) "Yes, I'm autistic, but we can't say, can we.  I'd get fired. No-one would take my 30 yrs of work seriously any more, even though I've been autistic all my life and it's that autistic integrity, honesty and focus that has driven the success."

We even get a few naughty people wandering about in meetings and social media, spreading misinformation about us as a way to get more business for their own firms.  That's just rude, isn't it.

I'm very glad to be 'out' as an autistic professional.  After too many years of having to hide, I value being treated with courtesy, and won't work for people who cannot manage that.


But mine is a situation of Privilege, where I'm old enough and tough enough, and our clients already know and love us for what we bring to them (20+ years of error-free excellence and caring about the outcomes for them).  Too many still have to hide.

It's not OK.
This isn't 1940 any more.
We can stop pretending that all autistic people are like that 1940s myth-set.

We can of course put good and proper support around the minority who need specialised help and support, and around their families.  That's fair and right.  Their lives are every bit as important as everyone else's lives,and they are worth every bit a much.


The reality is that your lives are already heavily reliant on the autistic professionals around you.  It's 2020.  Let's let people be real about who they are.

Thank you so much.

PS - Research to back this up?  Here you go...

http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html
https://annsautism.blogspot.com/2016/11/autism-1-in-30-missing-most-females.html
https://www.health-ni.gov.uk/sites/default/files/publications/health/asd-children-ni-2019.pdf huge study in Northern Ireland.  1 in 30 is autistic.  In fact, 1 in 20 boys...

Sunday, 24 November 2019

Anxiety & Anger in Autistic Children and Young People


This is a diagram I made about some of the reasons why an autistic person may curse and swear, during periods of high anxiety, stress or distress. 

Anxiety, depression, trauma, OCD and other mental health situations are common amongst autistic children and young people.  Not because of autism, but because they spend a lifetime being told they are a disaster,a deficit, not the child anyone wanted.  They spend a lifetime being coerced into pretending they're not autistic, punished for brain events outside of their control, bullied and ostracised by non-autistic children and young people around them.  Frankly the only miracle is that the mental health crisis doesn't affect 100% of them.


Failing to understand autistic distress behaviour has led to a lot of poor outcomes.  I see some people misunderstanding the reasons for 'acting out', and assuming that it's directed aggression, at a particular person within earshot, for reasons of nastiness or prejudice.

It rarely is.

Autistic processing, sensory and social differences mean that autistic responses are also different.  It is vital to be able to decode what's happening, if someone is in a crisis situation and using some lively or offensive language.  It's preferable, of course, to have enabled life to be as pain-free and stress-free as possible for that person.  But, we'll start from that worst-case scenario where there they are in distress, swearing.

First, you are going to ask them what's wrong, yes?  I hope so. That's always the starting point.  Asking, using communication they can understand, and giving communication methods and time for them to respond.  All whilst ensuring you use skills to check for immediate safety for them and others of course.  All whilst thinking about getting them to a place where they can be calmer, a pre-organised quieter space with some loved safe things. Whilst avoiding eye contact, and keeping body language, voice tone and face expression slow and caring, not fast and aggressive.  That planning should always be part of any de-escalation process.

1. Are they in physical or brain pain?  Yes, brains are physical things, but a lot of medics assume those are two separate features.  Check for pain.

Physical - a lot of autistic people have co-occurring chronic pain conditions. 

 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6804669/ is a starting point for you.  If you're in pain all the time, and people aren't helping you with that, what is your mood going to be like?  Are you just a nasty person?  Nope.  There's also research that swearing is one way to reduce pain levels. https://journals.lww.com/neuroreport/pages/articleviewer.aspx?year=2009&issue=08050&article=00004&type=abstract is a starting point.  Not sure about that?  Go watch some matenity ward shows where there's videos of people giving birth.  That language isn't polite, eh.   You ever drop something heavy on your foot?  Did you say, "Gosh, well well, oh I say!"  I doubt it. 

Brain 'pain' from approaching meltdown or shutdown is very real, and a number of autistic people may use swearing as a way to warn people, or cope.  Disastrously, instead of retreating, people may stay and get confrontational.  Wrong approach entirely.  Remember, autistic meltdown may be an actual brain event caused by electricity 'spiking' in the brain.  Here's your starting reference 
https://link.springer.com/article/10.1007/s10803-019-03908-2

2.  A response to an actual dangerous person around them.  Ever been really scared of someone?  Ever thought of using strong language to tell them to go away?  Autistic people are a highly targeted group.  Lots of good research on that sobering fact.  We all like to think that all those around more vulnerable young people are nice, kind individuals. But we also read the newspapers and watch TV.  "We didn't know. They seemed so nice.".  If a young person is reacting strongly to someone being near them, don't make your only response to blame the autistic young person.  Check what's been happening. 


3.  Delayed response to earlier events.  Maybe way, way earlier.  Autistic people are at increased risk of trauma responses, from awful things done to so many.
 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6061115/ is your starting point for that.  Trauma responses may include flashbacks, and may be nothing to do with who's in the room right now, or what's happening right now. 
Autistic people may also have delayed processing of emotions, so a scary or angry-making thing from earlier may take a while to process....then whoosh, there's the anger or fear, and there's the swearing.  Think about those possibilities.

4.  Sensory and social overload causing a blockage in the brain's ability to process stuff. Meltdown, shutdown.   Ever been stuck in the worst gridlock ever on the roads, everything round you jammed solid, no way to move. (shutdown) You're tired, you need the loo, you have things to do and you are Stuck In That Traffic?  How do you feel?  You may want to swear. How about when you are desperately hungry?  Are you calm?  Or do you get 'hangry' - in a bad mood until you can eat something?
Read http://annsautism.blogspot.com/2018/07/roundabout-hypothesis-guest-blog-by.html  about Roundabout Hypothesis by Chris Memmott.  Many have said that is a very helpful tool for thinking about autistic behaviour and responses.  Our job as allies to autistic people in our lives is to unjam that brain's 'roundabout'.  Signals like hunger, thirst etc may be confusing or painful mysteries in the 'traffic chaos'.  A simple checklist of 'what do I need right now' might help.  So does that quiet space to let the traffic get sorted out.  Once that 'roundabout' in the brain is cleared, we can function again.  Shouting at us during peak traffic is doomed to failure.


5.  Mistaking who's who.  Lots of autistic people are faceblind. (Prosopagnosia is the formal word for this). 

https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1469-7610.2010.02258.x  is one piece of research discussing this.  In other words, we may have difficulty seeing which person is which, from their faces.  We might recognise them only when they have a particular neutral expression.  Or when their voice is calm.  Or when they are wearing particular clothes, or have a particular hairstyle.  Perhaps the response was meant at a completely different person, and they have mistaken one person for another?  Check this.  



6. Responding to a conversation in another room or space nearby.  Autistic hearing can be extraordinarily sensitive.  It's quite possible for many to hear conversations that are inaudible to others.  For example, people discussing the autistic person in a dismissive way, in another room nearby, feeling sure that they can't possibly hear.  They probably can.  That needs some thought, because the and 'behaviour' that may result from that may look as if there's no cause.  Or may look as if it's aimed at the people in the current room.  Check.  And - be aware that if you ask whether an autistic person can 'hear voices', they are going to be honest about how many people they can truly hear, chatting, all over the building and outside.  Some have mistaken it for a sign of mental ill health.  Nope.

7. Tourette's Syndrome or Tics.  Quite a few autistic people also have tic syndromes, which may involve saying random words or phrases, which may include swear words.  Especially when stressed or in sensory difficulties, it seems. Worse still, for some, the more they think about not saying a particular word, the more their brain uses that word as the 'tic'.

Here's an example. A Venn diagram of the overlap between autism (ASD), ADHD and tics (TD).




It's from this research paper
https://www.tandfonline.com/doi/full/10.1080/08039488.2018.1444087

So, are they really being prejudiced?  Or is it a brain event where it can't stop itself saying the one thing it's not supposed to say?


8.   Copying others.  If an autistic person has heard lots of other people saying it, perhaps they think it's OK to say.  Trying to work out what situations are OK, who is OK to say it in front of, and when to say it, is all very complex.  Autistic social communication and social 'ranking' is very different, so this may be a genuine set of misunderstandings between the autistic person and the person trying to explain the rules.

9. Exhaustion.  More and more research happening, showing that autistic people are desperately short of sleep in today's busy, noisy world.


This is just some of the possible reasons for distress behaviour, anxiety and anger.  There may be others. 

It could well be that an autistic person really doesn't like someone and indeed is really intending to be angry at them.  Or maybe they just like swearing.  Some people do.   After all, we're all human.   But that's rarely my first thought.  Whilst autistic people have their own straightforward social communication system, most autistic are polite when it's appropriate and possible to be polite, and very keen to follow whatever rules they can cope with.  So, investigating is really important.

Get expert advice in to decode situations that have become serious, before they become catastrophic for the person.  Misunderstandings can so easily escalate, and the young person may find themselves in deep trouble because people haven't understood what was actually happening.

Thank you for reading, and learning to be the best allies you can be.