Sunday, 10 February 2019

Autism. Is your training from the 1940s?

1940s male teacher at a blackboard, using a cane to point to an equation. Caption reads, "Thus we conclude that unless the small boys are biting someone or solving this equation, they are not autistic. Any questions?"

In the 1940s, there was some early information about autism.  Most of it was wrong.  Unfortunately, a lot of it is still in the manuals and training materials, but upgraded in parts to newer wrong information.

So many myths.  If you're about to receive training, you could treat this as a sort of '1940s training Bingo card'...

About numbers. (No, it's not 1 in 100, it's around 1 in 30, though 1 in 40 isn't a bad guess either).
About ability. (No, it's not linked to a low IQ; we were using the wrong IQ tests).

About conduct. (No, it's not linked to a greater risk of violence, thank you).
About gender. (No, it's not just males).
About speech. (Most autistic people do learn to speak).
About age. (No, it's not just young boys, & no, we don't grow out of it, any more than people grow out of being white).
About ethnicity. (No, it's not just white people).
About employment statistics. (No, it's not 16% in full time employment, it's higher than that).
About cost to society. (No, it's not £32 billion.  In fact, society benefits greatly from autistic minds, financially and otherwise, and we don't measure someone's worth only in money).
About the need for early intensive expensive therapies or the child will be a dribbling wreck forever (Actually, good research shows that most go on to develop skills quite naturally with ordinary loving support, just at a different time.)
About the need for Applied Behaviour Analysis to control 'problem behaviour' (ABA is sometimes rebranded as Positive Behaviour Support). (No, good research, e.g. Cochrane Review, shows that's generally no more effective than any of the other alleged cures/'normalisation programs' out there).
About autistic people needing a cure. (No, most are very clear that we don't want one, although personal choice would be respected if there was any such thing as a cure, which there isn't.  It's a natural diversity, not a disease, although some need significant support.)
About it being better for autistic people to stop using repetitive movements. (No, research shows we concentrate better when we do).
About autistic people needing to be stopped from focusing on specialist hobbies. (No, research shows that's often our way to good careers).
About the need for eye contact to be given, in order to achieve in life.  (No, new research shows that even non-autistic people generally don't bother, and it makes no difference at all to friendship chances).
About autistic people being 'the problem' with relationships and social skills.  (No, it's a double empathy problem, where autistic people communicate differently and have a different cultural understanding).
About sexual identity. (Little to no understanding that a third or more autistic people are part of the LGBT+ communities).
About a lack of empathy. (No, good research shows this is just a myth).
About a lack of theory-of-mind, i.e. the ability to understand that others have different opinions.  (No, that has been debunked as well. Most gain this with age).

So, how on earth have we ended up with this many myths continuing painfully from one decade to the next?

I'm afraid the answer is that too much of the training has been stuck in the 1940s.  Too much is done by non-autistic people, often ones who happen to know an autistic person in some way (maybe a relative) but seemingly have never asked them about life.  I mean 'asked' in any communication sense, not just speech.  Over a million autistic people in the UK, and too often, such trainers have none of them as personal friends, none of them as colleagues.  Isn't that odd?

Such trainers pass on the ancient myths, generation after generation.  They write them down, put them on Powerpoint presentations, and deliver them to you as if they are fact.   Research based in part on materials from the 1990s and 1980s, which was based largely on watching groups of profoundly disabled young men in a care home, as far back as the 1940s.   As far removed from a balanced view of autism as one can get, in fact.

Worse still, they often expect you to pay for this.  It might look slick, with excellent graphics, and the trainer might look like they could pose for a fashion magazine .  But...are you really wanting 1940s material?

Does it work, all of the Tragedy stuff?  Let's look at the outcomes after enduring decades of this myth-making and misunderstanding from some.

Are autistic people better employed?  No.
Are the autistic people who are in employment better able to disclose that they're autistic, safely?  No.
Do they have safer lives?  No.
Do they have better education?  No.
Do they have better healthcare?  No.
Do they have greater access to arts, culture, faith -  things that bring joy and meaning to life?  No.
Do many have catastrophic mental health situations from all the negativity?  Yes.
Do too many end their own lives, unable to take any more of it?  Yes.

I'm going to be quite clear that some places are excellent.  Some people are excellent.  Some trainers are excellent.  Some researchers, parents, teachers and people from all other groups are excellent.  I'm blessed with working with a lot of them.  I'm also going to be clear that yes, some autistic children need a lot of support.  And of course society needs to ensure they - and their families - get that. By all means direct such families to the autistic specialists and allies that they need to help them with their young person.

But, generally, the state of training on autism is of low standard and lacking integrity.  I've been in this industry a long time, and spent many years as a professional trainer on autism, working nationally and internationally with groups of all kinds.  What I see, and hear, from some of the bigger charities and groups, is very poor.  I won't name names, because that's unprofessional.

Do we need to do better than this now?  Oh yes, indeed.

So, how do we do this?

For a start, you need to ensure that your training is authentic:

Ask:  Whose company is this?  Is it led or co-led by autistic people?    Do you want training from people who don't have confidence in autistic people to co-lead?

Who designed and created the trainingAre they qualified to do so, either from lived experience and excellent train-the-trainer skills, or via a professional modern neurodiversity-friendly course?  Are they autistic people, perhaps in partnership with allies?  

Were they paid properly for that, at the same rate as the non-autistic people?  Think about your company's anti-slavery Corporate Social Responsibility statement.  You don't want to be teaming up with groups  who use autistic people as slave labour, and I'm afraid some do. Or, they pay only a token amount, way below living wage.  We're not slaves.  We have houses, families, bills to pay.  We need actual money, the same as everyone else.

Who is delivering the training?  Is it autistic specialists, perhaps with allies as well?

If the answers to that are 'no', you might be getting '1940s training', and perhaps perpetuating the awful lives that autistic people already experience through no fault of their own.

Insist on authentic, expert training from autistic-led teams and our allies.

Want good training from such teams?  People like me work with them, and run them.  Ask us.  Look for #ActuallyAutistic trainers on Twitter, for example.

Saturday, 9 February 2019

Autistic Children and Toilets: Misunderstanding the Difficulties

A disorientating digitally altered photo looking down into an empty toilet cubicle.

Many autistic children sense the world very differently from how many parents and teachers expect.

Above, an example of how an autistic child may see a room with a toilet and hand basin in it.  A tiled wall, a patterned vinyl floor surface.  Would you put your feet on that floor?  Could you work out what it was?  Could you even reliably find the toilet?

Now let's add in the 'smellscape'.  Perhaps air fresheners.  Toilet cleaners.  Hand soaps.  Wee.  Poo.

Then, let's add in the soundscape.  Noisy pipes.  The jet-engine-like flush.  The deafening smash of wee or poo hitting the water, and the terrifying prospect of freezing water splashing up.

Let's then add in the elements of freezing cold toilet seat, ice cold taps or boiling hot taps, the ice-cold metal of the toilet handle, the taps.  The searing rough surface of the hand towel, or the further deafening roar of a hand drying unit perhaps.  Then, of course, the pain of dragging clothing down in order to use the toilet....coping with the complexities of the toilet paper and what to do with it, where to put it.  Dragging clothing back up again, like someone using sandpaper against your skin.

This can be the most terrifying experience imaginable for a child whose experience of the world is turned up to 'max'.

For others, each noise and smell, texture and feeling is a fascination and a puzzle which needs exploring, and they may seek out those experiences over and over, trying desperately to make sense of them.

Some may experience difficulties with balance and co-ordination, or with internal signalling to say they need a loo until it's too late.  Or with the ability to point or signal that they want the loo.

To their credit, many autistic children endure all of this and actually do use the loo, politely, over and over again, and continue to do so for life.  No-one questions whether it's hell, or whether we could design such spaces in ways less exhausting to use.  So, let us bear in mind that most autistic children do manage to cope with this ridiculous scenario.

How easy it is for some adults to misunderstand why an autistic child may avoid using a toilet.  Some are so desperately afraid of these spaces that they will only wee or poo in a quiet, safe corner.  Often on soft material that disguises the noise.

"They're just animals - they just don't care - this is deliberate challenging behaviour - we must find ways to force them...."  We even have playwrights writing a horrible play which portrays autistic children as animals, using dehumanising puppets and this theme.

Oh my.  No.

Always, always presume competence.  Presume that the child wants to learn.  Always, always show respect and caring.  Take good advice from autistic advisers and our allies, who are experienced and expert.  Many are parents, many have vivid memories of their own of the challenges of such spaces.

If you are designing such a space, take good advice on that design.  Think about minimising the pain and the disorientation.

Instead of assuming that, since it's OK for you, it must be OK for an autistic child...think differently.  Because the answer to all of this isn't the child being forced into that hellish space.  It's about working with them to find answers to each part of that nightmare.  Thinking about making the visual experience understandable.  Minimising the smells.  Minimising the noise.  Using soft towels, soft paper.  Using clothing that doesn't cause terrible pain when it is pulled up or down. 

Work together.  Learn from one another.

Thank you for listening.

Friday, 11 January 2019

Autism: Some Vital Research Links.

A black and white photo of an historic library showing towering bookcases of old books, with a man finding one.

Many autistic people have had a terrible time, for many decades.  Why?  Because of the assumption that autism is a fault that needs fixing.  We see that assumption still happening in some research.  We also see some very strange ideas about how to 'fix' this alleged 'fault', including the push to put all autistic children through forms of behaviour therapy.  Positive Behaviour Support.  Applied Behaviour Analysis.  Well, those two are now basically the same thing. may be helpful if you want to reflect on that.

We don't hear much about autistic reality from those research papers.  We also don't hear much about the recent concerns about the the Behaviour Therapy programs.  Especially given that autism is now regarded by many autistic people as a neurodiversity,  or indeed a minority people, not a fault.  Although adding that of course some have multiple conditions and require a lot of support, and that proper support that values and respects autistic people fully is much needed.

This is a quick list of some of the research that I value:

That one is pioneering research around whether behaviour therapies lead to an increase in trauma symptoms.  Initial research.  It found a link.  More research is happening on this.

Research in that one shows that too many behaviourists are not checking for underlying mental health conditions before applying behavoural 'therapies' to autistic people. Often also failing to note that the person has PTSD, so thinking it's just autism causing the 'behaviours'  and the person is being 'challenging'.  As many behaviourists are entirely unqualified in autism or mental health conditions, (let alone the highly specialist interplay of autism and PTSD), hardly surprising.    There is clear potential for harm.

Are autistic people more likely to suffer incidents that cause PTSD?  Yes.  Huge numbers are attacked or treated endlessly badly by some non-autistic people.  Deeply concerning, isn't it.  I wonder which groups needs 'behaviour control' the most?
page 23 gives a preview of the research by McGill & Robinson, being published soon.  Qualitative so not meant to be huge numbers of people.  13 autistic adults who had ABA as  children. 10 found it a mostly negative experience, listing 'removal of autistic self' and 'increased vulnerability', for example.

The research in that one is worrying, frankly.  Cassidy & team noted that if autistic people are having to mask their autism (which behaviourist approaches teach them to do), their risk of suicide rises. "Camouflaging significantly predicted suicidality in the ASC (autism) group.", to quote the research.   Are we normalising autistic children at the later cost of their lives?  I leave the question there.

Meantime, here's some positive papers:  showing autistic children play more fairly with other children.

In this one, the autistic participants (20 Uni students) were less likely to tell lies for their personal gain than the non-autistic students.  This was still marked as a fail by the researchers, of course, who failed them on Not Giving a Long Enough Explanation As To Why.  Desperation to prove autistic failure is strong, eh.

Above,  autistic children demonstrated excellent background-scanning abilities in classrooms, pointing to a superior ability to use senses to scan for danger.  An evolutionary advantage to have some people in a community who do that, rather than stare at eyeballs much of the time.  Much anecdotal evidence from some autistic people of their sensory superiority saving lives, by spotting danger first.

Meantime, this new research shows that autistic stimming (repetitive behaviour) doesn't stop learning.  We also know that it helps regulate and calm individuals, and is a lovely paper about the purpose and essentiality of autistic stimming.  Check those 'behaviour plans'.  Unless a stimming behaviour is causing damage to the person or those around them, leave it.

Do autistic people have empathy, or (even better ) compassion?  Most do, yes.  Here's a sample of responses from a large piece of research by Chris Bonnello (2018) which looked at results for those who also had learning difficulties, or who also were non-speaking:

Wanting the article itself, featuring the fabulous findings from some 11,000 people, of which over 3000 are autistic?  Enjoy. So much that dispels myths about autism.  

And a personal 'favourite' from 2012 in which autistic people were shown to give a lot to charity ... so the researchers actually altered the data to make it look like they didn't give much to people-related charities, thus could be said to not care about people.   Surprisingly common behaviours from research teams, if funding comes from the breathtakingly rich and powerful anti-autism corporations.  There are some.  

These are just a few examples of research papers that show autistic people to be generally good, honest, caring citizens, greatly at risk from some non-autistic people.  And greatly at risk from inappropriate application of therapies that fail to take account of autistic reality and need.

Here we are in 2019.  Time to move on from the dreadful language of the 1950s, with its negativity.

I'd like to see more researchers starting from that good grounding of 'what are autistic people actually like', and working with us, rather than against us.   We have fantastic work being done by  PARC, for example, and Autscape. and are your links.  

The work I do with organisations like AT-Autism, Autistic Pride Reading and Autism Oxford is all about changing the attitudes of the people around us, whilst improving the self esteem of the autistic people.  It proves very successful indeed.  Families looking for those things, and good support from a specialist speech and language therapist, if needed, will be likely to find many joys ahead.

Go communicate with the people involved,  finding plenty more autism-positive materials, and ways that actually help autistic people.  Ways involving respect, responsibility, collaboration, partnership and shared journeying together.

Thank you for reading.

Tuesday, 1 January 2019

"Nearly all autistic people can write"

Sometimes I say something radical.  So radical that some out there are shocked.  One of these statements is, "Nearly all autistic people can write." 

"Oh no they can't", say a few stalwarts of the autism world.

"Oh yes they can!", I respond.

So, without it turning into a complete pantomime performance, let me explain how I reach this conclusion. 

First of all, note the phrasing.  "Nearly all autistic people can write".  It does not say, "Nearly all autistic people are writing."  That would be untrue, I sense.  But, can they?  Why yes, nearly all can.  Here we go with the explanation.

Let's look at IQ. This is one of the big Theories, that lots of autistic people have a low IQ.  But, do they?  This study of over 10,000 autistic children for example shows that more than three quarters have an IQ in the normal range. 

What about the other quarter, do I hear people ask?  Surely their IQ is 'too low' for them to be able to write using anything?  I'd debate that as well, but for the moment let's assume that may be let's consider the next study, which looks at the sort of IQ test used for autistic people and found that most studies used the wrong ones.  If they had used the RPM test, they were likely to find that many of the allegedly-very-low-IQ autistic people had IQs that were in the normal range.  So, not many autistic people have a low IQ.  I could at this point debate further what we mean by 'low IQ', since a lot of the allegedly-low-IQ autistic people I share life with are a darned bit brighter and faster than me in some areas.  Every single one of them fabulous people.

Next up, who are we measuring?  Do we think we have the full number of autistic people to measure for things like IQ or writing ability?  No, we don't.  We know from other research that many autistic people do not realise they are autistic, or are not prepared to say that they are.  These groups include many females, many People of Colour, many people who are extravert, many who are older, many others who have learned to mask their autism at huge personal cost.   Some also who were misdiagnosed with things they don't have at all, such as personality disorders or schizophrenia.  In reality, some 1 in 30 of the population is likely to be autistic, (taking the USA CDC latest figures and recalculating for the missing people.  And, in the UK we were thinking it was 1 in 100.  So, it appears we may be missing 70% of the autistic people from much of the research done to date. Most of those missing autistic people are likely to be reading, writing, doing jobs quietly (or noisily...) without a person ever testing them for a single thing. 

I put it to the research communities that the statistics we have at the moment may be unrepresentative of the whole.  

Plenty of researchers have done their best, of course.  It's a societal problem, in which diagnosticians have been determined to look for geeky males or people in Institutions or other care settings, and failed to observe the others.

On we go to the subject of writing.  These days, we have wondrous technology.  We have apps for everything.  We have tablets, we have laptops, we have speech-to-text products, we have smartphones, we have Alexa and similar.  The photos on the page show a fairly typical easy-write app, and a standard English keyboard.  Just two of the ways that people can write, independently or with assistance.

So, that takes us to where we started.  With the statement, "Nearly all autistic people can write."

And so they can.

What we need to do is enable it.  Enable people to communicate in ways that turn their creativity, their thoughts, their ideas, into writing.  And of course any other communication that works.   We see so much on Twitter and blogs already where people who do not use spoken language are able to communicate.  I use such things when I'm not able to speak.

If we assume competence, we will have a lot fewer frustrated, depressed, anxious autistic people in the world.

I think that's something worth aiming for, between us all.

Thank you for pondering this.

Monday, 31 December 2018

Autistic children being bullied: How to ask & understand

A number of wooden figures, a group on the left, looking angrily at one individual on the right, looking scared

Most autistic children in schools are bullied at some stage.  We know this from research.

We also know that too many of the bullies get away with it, for month after month, and year after year.

We know that many autistic children sink into depression and anxiety, become school-refusers, start to fail in their targets, and some go on to self-harm or to consider taking their own lives.  Some die.   It's a very serious subject, and every school needs to be very serious about understanding, investigating and handling bullying situations with thoughtfulness, care and compassion.

Many school staff are of course professional, caring and compassionate.  I want to be clear about this, because it can be too easy for it to feel like people don't understand the pressures of teaching.  The relentless targets, the endless workload, the limited budgets, the fight to get support for a child when there are a lot of children to fight for.  Many of my friends and colleagues are teachers, and I was involved directly in school Governance for many years, in a tough area with 400 fantastic young people, and later in a specialist autism school.  Working as a professional now in the field of autism, my own autistic past and present have taught me a huge amount.  I'm very grateful indeed for the many fellow professionals I encounter, and all they bring to the teaching professions.

First, we need to understand that autistic children are generally very honest, and very accurate.  Few invent stories to get another child into difficulty, and few invent things that have not happened.  So, our first step is to presume competence and say that we will take what they say seriously and investigate it properly.  

Second, we need to understand that autism is largely a sensory processing difference.  Many autistic children process pain very differently, for example.  Some can be put into intense pain by a simple repeat flashing of a light into their eyes, or driven to shutdown by someone deliberately clicking and flicking stuff near them time and time again, knowing they cannot cope.  Some will double up with pain from being jostled in a corridor, by bullies who know how to jostle in a, "I was just trying to get past, Miss, honest", way.  Every.  Single. Time.   Some will not know they are in intense pain, from really serious injury, because the pain processors don't connect properly.  Our own son played rugby for several weeks with a broken foot, and the GP & physiotherapist had no idea it was broken.  They asked him if it hurt.   It did not.   That was a meaningless question to him.  If only they had ordered an X Ray....

And there we have our main problem with a good investigation.  We ask the wrong questions, quite unknowingly.  We assume that the autistic child will appear to be in pain, and will respond with the right pain-responses.

Autistic brains deliver information differently.  They gather it differently, too.  You might want to look at the post on Roundabout Theory by our son, now a well respected trainer and conference speaker. for how fast autistic brains can reach 'overload', and the importance of having space to let the brain's 'traffic' clear and start flowing again.

There's four basic types of memories, as we know.  But for others reading, easy summary - 

Remembering how to do something (procedural memory).
Remembering facts about a subject or individual (semantic memory)
Remembering sensory details about something, appearance, sound etc (perceptual memory)
Remembering a timeline of what happened when (episodic memory).

That last one is the one many autistic young people struggle with.  Some autistic people have an amazing recall of what-happened-when, so we can't generalise too much. 

How does that episodic memory difficulty work?  An example:

"We went to the cinema a few days ago and saw something. What was it?" <thinking> <still thinking> <ha, a fact has arrived - 7.3 IMDB rating...wait now, what was that linked to...following the memory trail back...thinking, still thinking, ...some parts good, other parts bad...nearly there....still thinking....ha! Aquaman! I've found the file! And wallop, there's the data for the whole film and what happened.  It wasn't filed by time and date.  

It's all in there. But often in a 'sealed compartment' with no link to the timeline from today.
If a child is very traumatised, that box may be completely unopenable by them.  A number of autistic young people are living with PTSD or cPTSD from incidents or series of bullying attacks.  That, of course, is very specialised territory to unravel and needs the help and support of trained PTSD professionals.

So, what happens when a teacher investigating a bullying incident last Thursday asks, "What happened to you last Thursday, Sam?"

Sam may not have a clue.  Last Thursday needs putting in context. Sam may well respond with answers that seem truly unhelpful, "I don't know".  Or "I had cheesy chips for tea", or "I went to school."  Those are, of course, accurate answers to the question.  We need to be specific.  And build on the information, carefully and slowly, with the right support for what that particular child needs.

Supposing a teacher asks, "Did it hurt?"  And Sam responds with, "No".  Often, that's the point where the confused teacher says, "Well it can't have been that bad then."

Think about our son, above, playing rugby with a broken foot for weeks.  It didn't hurt.  But it was the wrong question.  So, what question should we ask?  We may need to consult a school nurse or other trusted healthcare professional, in line with school policies and consents, to investigate for injuries.  Look and test, rather than assume the answer "It doesn't hurt" means "It's really minor".  If there's bruising, suspect it could be serious.  Although some autistic children are naturally uncoordinated and may well injure themselves accidentally.  Generally the bruise and injury patterns are different for that, though.  Check your safeguarding policies and follow those.

Supposing a teacher asks, "Did you ask them to stop?"  

Many autistic children will go straight into shutdown in a social emergency.  Their ability to speak or move becomes nil.  They could no more speak than fly.  Others will go into a meltdown event, which is not a temper tantrum, but may involve what looks like angry retaliation.  It's more like a epileptic 'zone out', and out of their control.

Either shutdown or meltdown are hugely unpleasant for them to experience, often with no memory at all of it happening, and much exhaustion and bewilderment afterwards.  It is not an attempt to attack someone.  

Supposing a teacher asks, "Are you friends with (the bully)?" and Sam says yes?   It could be that Sam has no idea that she is being bullied.  It could be that the bully has claimed to be a friend, and Sam truly thinks this is what friends do.  It could be that Sam is so lonely and desperate for human company that she is willing to put up with a bully, because at least the bully will talk to her sometimes.  Yes, some of our wonderful autistic children are that desperate for human contact.  In one piece of research, teachers spotted far more incidents of bullying than the autistic children did.

Bullies may learn that they can hit an autistic child hard and they don't say anything, and apparently don't feel pain.  Bullies might discover an autistic child who can be put into intense pain with things that are really easy to disguise from the teacher.  Bullies soon learn that the world often wants to see autistic people as 'nasty', as 'troublemakers' . It is easy for bullies to relish in telling others that the autistic child is the problem, the autistic child is the bully really....

We can be aware.

We can give the autistic child time to process what happened.

We can allow them to use written answers, drawings, maybe model figures to describe what happened.

We can get in an autism specialist to help decode what happened, and work alongside the team.

What one  cannot ever do, as professionals, is say, "I don't believe you.", or "You're just imagining it."  Or "It was really minor, just get over it."  It wasn't minor to them.  It was painful, and scary, and humiliating.

It can be deceptive, just looking for 'the right' responses from an autistic child.  They may smile when in pain.  They may laugh when terrified.  Their responses may be delayed, or seem inappropriate.  Those do not mean an absence of danger.  Check.  Check again.  Check with the family.  Check whether the child is also being targeted on social media.  Targeted on the school bus.  Targeted to and from school.

Meantime, keep a safe and respectful watch over things.  Find ways to separate them from people who are causing them difficulties, if you can.  Move the troublemaker rather than disrupt the routine and safe-spaces of the autistic child.  Is there a safe space the child can access for break times, with an enjoyable hobby, if they'd prefer that? A different area of field they can run round, if they need activity?   Is there a 'safe person' scheme at breaks, an individual that children can go to be with who can be a second set of eyes and ears for them?  A 'friends bench' where a child can go if they are feeling alone or unsafe, where friends and safe appointed people can come over and sit in companionship with them?

I'm a little wary of the befriending schemes used by some schools where children are effectively bribed to be with the autistic child.  Often that doesn't end well, and the autistic child get the impression that people will only be with them if they pay them to be. That's not a good life lesson for any child.   So choices of companion need to be thoughtful ones, with a child or young person who truly wants to be a friend to people.

Has the whole school been given talks about being a safe and respectful place, and about what to do if we think a person is in difficulties with bullies?  There are excellent training groups who can do this.  If it's a whole school, or a whole class, we don't need to reveal who is autistic, or who might be in trouble.

The autistic children in our classes are fantastic young people, but often in fairly unbearable levels of fear and pain.  Often blinded and deafened in the glaring lighting and soundscapes of modern classrooms, and dreading the next beating, the next ostracism, the next shutdown.  The next person to tell them it was really minor.

It's heartbreaking.

We can do something about that, together.  Because they deserve better.

Saturday, 22 December 2018

Happy Autistic Christmas.

Tree with red heart ornaments hanging on the branches.  It is winter. There is a church tower in the background, against a blue sky.
It is a special time of year, in our household.  Like many where all are autistic and adults, ours is an autistic way of celebrating Christmas.  One that honours not only the birth of Jesus, but also the communication and culture of our autistic family.

I read a lot of 'how to survive Christmas with an autistic child' stuff.  As if that is all there is - a distressed autistic child, allegedly not caring about anyone else.  The majority of autistic people are not children.  And we not only survive, but thrive, if allowed to. Most autistic people are very thoughtful about others, but have a different culture and communication style.  It can lead to misunderstandings between autistic, and non-autistic people.  Let's look at how it works in our all-autistic home.

Each of us knows the brain tolerances of the others in the household, after many years together.  So, a time of peace and joy involves being sensitive to those, as a way of honouring and loving one another.

Presents are chosen collaboratively, so that each person gets something which is copeable-with.  A favourite passionate interest, perhaps.  For me, that's maps, for example.  We know the pattern of the day, and try to keep to it.  Each of us ensuring that we have the right space, the right togetherness-time and quiet time.

For me, usually a visit to church, to celebrate Christmas with fellow Christians, in a service style that helps me rather than hinders.  A gentle routine, in safety and in shared fellowship.

At home, the shared tasks of preparing the meal, watched over by the family animals.  One of them is a self-trained 'alarm clock' for me, who reminds me when something need taking out of the oven.  Collaborative preparations take into consideration what each person can manage.  Who is good with sharp knives?  Who has the strength to handle heavy pans?  Who can cope with the noise around the cooker, and who need to retreat whilst it's on?

Conversation is without eye contact, kept to useful and straightforward subjects, in tones of voice that might sound bored or pedantic to others - but are preserving energy for us.  Quite often, no conversation at all, just enjoying sharing a space together for a while.

The meal is simple, doable, and allows for people to depart for a while at any point where their brain needs to rest.  Clearing up is done collaborately, again with thought to who can handle heavy and sharp things, and who can cope with the clattering and scraping sounds involved.  Noise cancelling headphones at the ready.  Sunglasses for any low sunlight through the windows.

Presents, wrapped to the best of our ability (variously excellent, fair, passable and yikes, depending on which person's wrapping we're discussing...), are opened together but with little fuss and bother.  A simple heartfelt thank you, or hug, according to the preference of the person. If we don't like it, we don't have to pretend that we do. No-one is insulted by this.

Then time to depart to four corners of the house, to spent equally blissful time with a new gift.  Perhaps a shared time watching the Queen's Speech, or in different rooms on different social media.  Sharing joy and life in general with people over social media is very much part of my life.

Perhaps a walk with the family pet(s), or - until fairly recently - a foray to the stables to look after the rescued horse we called a member of the family for many years. He lived to a grand age.   There was something glorious about being in real live stables at Christmas (and of course every day), in the straw, making sure that all was well and all were fed and watered.  Whether through snow or driving rain, whether damp drizzle, dazzling sun or sharp frost, animals need looking after, and sharing time with as companions.

Meltdowns?  No.  Shutdowns?  No.  Is everyone happy all day long?  Of course not.  We're a real family and of course we all have moments of grr, now and again. One or two of them very memorable... But we can stay in 'brain safety limits' together 99% of the time.  

What's Christmas about?  Is it about glitz and glamour, expense and brand names?  Parties and noise and clamour and karaoke, a game of charades, a 10 mile hike?

Maybe for some.  Each family has its own traditions, its own right way.

For us, the important things are just family, friendship and the birth of our saviour.  <and maybe maps...> 

Each year we're all still alive is its own blessing.

So, wishing each and every one of you peace and love in the days ahead, whether it is your tradition to celebrate Christmas, or to just enjoy time with those you care about.

Friday, 14 December 2018

Autistic People and Use of the Internet.

Generalising, the internet was built by autistic people, and it's run by autistic people.  The email systems, the smartphones, the computers, the software, the games, they're created and engineered,programmed and tested by autistic people.

Every time you use such a piece of technology, you can be thankful for autistic minds.  Their passionate focus.  Their creativity and design skills.  Their determination to create something that enables fabulous communication and that works (well, until the marketing people decide to sell something that doesn't work, so the design is altered against the advice of the autistic people...).

The photo above is to illustrate a typical pair of autistic people, both Doctors, logging onto the computer to share a Skype call with their autistic daughter, who is an international researcher now living abroad.  Are you challenged by that image?  Were you wanting to say, "Ah but surely they can't be autistic...surely they can't be typical"?  They're as typical as any other 'type of autistic person' you can imagine.

In the last few weeks, autistic people have used the internet to share collaborative working with me and the teams.  Work around conferences, research, family fun days, books, articles.  Some of those autistic people are non-speaking or only able to speak sometimes.  Sometimes I don't have speech and have to use technology to communicate.

Autistic people have used the internet to share with me, and with others, creative art, poetry, literature, cheering jokes, news articles.  Photos of landscapes and flowers, animals and stars, drawings and paintings, just so many fantastic things.

Autistic people have used the internet to share with me, and with others, their lives, their photos of their lovely friends and family.  Their interests and hobbies.

And autistic people support one another, online.  They also support endless other people online.  Sharing love, affirmation, empathy, ideas, wise advice.  Keeping a 'look out' for one another. Checking on people to make sure we're OK.

I owe my life to autistic people, who used the internet.  That's a debt I can never repay.

I attended a conference recently in which a person who isn't any sort of expert on autism stood up to make an embarrassment of themselves, by suggesting  *all* autistic people need to be supervised online to stop us being a nuisance.  

I didn't know whether to laugh or cry.  What an unprofessional thing to allege.  Is this from some myth that autism is all teenage or younger adult white males, sat in a quiet corner using a laptop in evil ways?  That stereotype represents a breathtakingly small fraction of autistic people. Do some imagine that autistic parents and grandparents, aunts and uncles, business leaders, academics, Judges, lawyers, therapists, nurses, Priests, Rabbis, Imams and counsellors are all spending their time being a nuisance online, in need of supervision?  Truly?  If that is their belief, they probably need to seek some modern training.  

We need to stop stereotyping. 

Let's look at some reality:

Many autistic people are relentlessly bullied by mostly non-autistic people online.  (And indeed offline).  Mocked, jeered, insulted, targeted, lies spread about us. People sent hate message, obscene images, blackmail threats.  Autistic people falsely accused with the most awful things, just to get some fun out of watching the distress.  In the last couple of decades as a professional working in this field, and as a safeguarding expert, I've seen the sort of horrors that keep me awake at night.  And some of the autistic people targeted?  Well, we didn't manage to help them in time.  They're now dead.  It's heartbreaking.

Instead of looking for ways to conjure up more false hate against one of the most wonderful, and marginalised, groups, let's all find ways to do better.

If you are a speaker, speaking about autism and safe use of the internet, start with how autistic people can find safer spaces online.  How to keep themselves safe from predators online.  How they can keep themselves safe from people wishing to defraud them online.  How they can keep themselves safe from bullies online.  How they can seek support from services when they are pushed to want to take their own lives, because the bullies find ways to get into every space they're in, online.   80% of autistic people experience bullying and defrauding, often from people they thought were friends. Over 60% have thought about taking their own lives, so bad is life.  30% of autistic women report being raped.  I could go on.  I won't.

I worry about a world where we want to allege that autistic people are the primary danger.  Nothing backs this up, apart from prejudice.

Talk about differences in communication styles and cultures, alongside and with autistic speakers and specialists.  How autistic and non-autistic people can misunderstand one another.  How we can both learn to communicate well enough with each other.  How both parties can find a clear way to say 'stop' if they need to.  And how to seek help if anyone - non-autistic or autistic - isn't respecting 'no'.   Autistic people are no more likely to commit a crime than anyone else.

Then, talk about how so many autistic people bring so much to the lives of so many people, not least each other. 

Before you speak, think:  Is it kind?  Is it true?  Is it helping to improve the lives of autistic people?  Are you speaking with, and affirming, autistic people?

Hurrah for the absolutely brilliant autistic people around us.  May we all find ways to thrive.

Thank you for listening.