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, or show distress behaviour, 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. 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. 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

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. 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  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).  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

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. 

Saturday 23 November 2019

Out as Autistic. Family and Relationship Responses

Two women sitting in a forest in front of a camp fire, chatting
So, you're autistic.

Who do you tell?  When?  How?  What will happen, as a response?

Unknowns are scary enough for most people.  For autistic people, often it's far scarier.  Our social circles are often smaller to start with, and we may have grown up in a world that has wanted to see our naturally-different social communication as 'rude'.  The thought of losing a friend or partner can be a huge thing.

Responses from others do indeed vary.

For me, a diagnosis was a fantastic thing, overall. It enabled me to know more about myself.  To seek out my own people.  To embark on a journey with teams to get good information out there, wherever we can.  But it was not without cost, at times.

Who responded well?  For me, I was very fortunate in a way to be in an autistic family, so it was affirming for me, and for those around me in the home.

Most friends and colleagues weren't in the least surprised, and coped beautifully.  

Some were a bit shocked, as they hadn't expected that news, and edged away, but recovered.  Although I think one or two are still in a bit of a state of shock....

Others pretended they were adapting to the news, but then turned away.  I found out more about them through that than anything else.  That what they wanted wasn't me.  It was a masked version of me. That's not OK in any friendship or relationship, to want the person to be something they are not.  Autistic people don't mask our identity as a way to lie to others. It's out of fear of ostracism, fear of targeting, fear of loneliness.  That mask can be difficult to drop after years or decades of keeping it in place.  But the clues of our autistic identity will always have been there.

One or two colleagues and contacts had ancient myths of autism and truly thought it was some weird combination of mental health crisis situation and psychopath, which is actually hilarious since it's pretty much the exact opposite of that.  They caused serious damage in their own personal hysteria.  So avoiding further contact with people who turn it into nastiness can be really important for health and wellbeing for us.  

But, generally, it was great.

Does everyone in my life know?  For me, yes.  But I'm a national figure, so it would be difficult to hide it now.

Not everyone knows everything, though, for sure.  In other areas of marginalisation, very few know.  Very selectively.  That's a personal choice.

For some people, 'coming out' as autistic is a dangerous thing.  Prejudice and hate, misunderstanding and anxiety might result in lost jobs, for example.  That should never happen, in a world that should be cherishing generally honest,loyal specialists.  But it does, sometimes.    There can be a risk of being further targeted by predators, for some.  So that has to be thought about too.

What of a marriage or partnership, though?  A close romantic relationship of some kind?  What happens when one partner gets a diagnosis?

It's a variable.  For many, it's a relief for both people.  A better way to understand one another.  An explanation for why the autistic partner finds some things so hard.  A reason why they may miss unspoken clues from one another on such a regular basis.  A chance to rethink how to navigate things.

For some, it's a new reason to hate. And a reason for the autistic person to have to think carefully about whether they want such a response in their lives.  A good relationship counsellor who is trained on modern autism (not ancient myths around lack of empathy, rigid behaviour etc), is opften important in decision making, if so.

Both people need to learn each others' language.  Autistic social communication is naturally different.  Autistic responses to social events are naturally different.  So are our responses to the environment around us, to sudden changes of plan that may lead to unknown sensory and social overload and a dreaded, painful brain event (meltdown or shutdown).  We're right to be sometimes wary, to be cautious, to be reflective of what we can and cannot do.  And a partner who trusts and respects that is vital in our lives.

For some, it's a chance to find our herd, our people.  To forge new relationships online with other autistic individuals.  To find ways to share hobbies, interests and romantic life with people who can understand us because they speak the same basic language.  And for others, it's a good way to explain difference and share life with non-autistic allies; partners who cherish who and what we are, and enable us to thrive in ways that work for both.

As with all things in life, individual decisions are important. 
Stay safe. 
Look for those who love you for you who are, whether as friends or as deeper partnerships.

Those are people to be cherished.

Wednesday 20 November 2019

Autism. "Social Hangover". Why the bit after an enjoyable time is difficult to cope with.

A picture of a child wearing a onesie suit with rabbit ears, with their hands over their eyes, as if they are sad.

"I don't understand it.  We had a fantastic time, at the social events.  Then, afterwards, meltdown. Or they just wouldn't talk to me at all.  How ungrateful is that?"

A common response from some of those around autistic people.  Sometimes it spreads to other thoughts. "Perhaps it's actually bad for them to see those people.  Perhaps they need isolating further? They're often upset afterwards. Is that person a danger to them?"

A lot of potential damage can be done by misunderstanding 'social hangovers' and autistic people.  Being clear that if someone is a potential actual danger, of course it's right to investigate that.

Let's see if I can explain more about 'social hangovers' and autistic people.

Firstly, many autistic people actually love being with non-autistic people for a while.  But it's hard. For us, and for them.   There's a lot of 'interpreting' going on, between the two neurotypes.  Autistic and non-autistic people speak a different set of social languages and signals.  So both can end up very tired.  (Real research behind that - truly we speak different social languages)

Secondly, a lot of socialising is done in a space with a lot of noise, smells, chaos.  See  for details.  Turn the sound right up.  Two minutes you'll never regret seeing, if you want to understand autistic sensory differences.  Sometimes patterned or grill-effect walls and fences can cause 'sensory static' for autistic people that becomes more and more difficult to process.

Autistic brains can handle about an hour and half of that chaos, if we really put effort into it.  Some, far less.  Some can do more.  When we reach 'stop' it's really hard to work out what's happening, for some of us.  We know we feel overwhelmed - but this is fun.  We want to be with the person.   So we don't notice the 'stop' signals our bodies are giving us.

Then, back we go into a building where they may be more sensory hell.  Perhaps noises, echoes, smells, flickering lighting...and we've no brain room left to process any of it.  Not even to explain it properly.   Another set of people try to interact, and whoosh - meltdown.  A brain event.  Not in our control.   Or, possibly into shutdown.  An inability to move, speak.  (Those may be more common, by the way - and are often mistaken as defiance or rudeness).  Mine are shutdowns.  Not spectacular to look at.  Hugely horrible to experience. Like being totally paralysed.

So, what's actually going on?  Are we ungrateful spoilt brats who need a good smack?  (A view I've heard a few times too often).  Well, no.   Absolutely not.  We're struggling to cope with a brain that processes the world very very differently to that of others.  No matter how much we love them.

What helps?
Consider advance sensory and social info.  Photos, plans of the space. Thinking about the lighting and the noise levels.  A simple free decibel-checking app on a smartphone can give you a good idea of how noisy a space really is.  Anything much over 30 decibels (dB) is loud to most of us.  You'll be shocked how many spaces are above 30 dB.

Thinking about planning how long to spend with the person.  And making sure they keep eye contact to a minimum if they can. Allowing time to answer questions and knowing that we may respond with 'I'm fine' as a reflex, not an actual answer. This is where knowledge of an autistic friend or relative is so important - learning to 'tune in' to how they are.  A good reason to keep care teams stable and familiar, wherever possible.

Thinking about how to stop from time to time, to 'tune in' to body signalling that it's had enough.  Definitely important after that first hour and a half.  A break is always a good idea.

Knowing that, once the socialising is over, we can retreat to a quiet place without people clanging and clanking things, chatting and otherwise causing chaos around us.

Knowing that, if it's gone wrong and we enter meltdown or shutdown, we're not going to be punished for it.  Some are, and it's as wrong as punishing someone for having a diabetic low sugar incident and collapsing from it.

Being able to decode how we felt, afterwards.  That can be hard, and take time.  It's easy to mistake a 'social hangover'  - low mood, anxiety etc - for any number of things it's not.

Thank you for learning a little more about autism, and for attempting to find ways to share our life's journey.

Saturday 2 November 2019

From Secure Accommodation to Supported Thriving: Steps for autistic young people?

Young woman sitting cross legged on a stool, imagining what her new accommodation will look like.

These are personal reflections, not professional advice of any kind.

Sometimes, autistic young people are placed in secure accommodation.  Perhaps because of a mental health crisis.  What happens when they recover enough to transfer elsewhere?

One of the questions often encountered is, "How do we find the right community placement, and how do we make that transfer in a relaxed way for them?"

Let's think about some of the absolute basics of this.  It's not a definitive list or professional advice for a particular individual.  It's a start to good thinking and planning.  I write it from decades of personal experience, as someone who was carer to a desperately ill close relative for many years, and had to engineer those transitions.  And as an autistic person who works with teams planning exactly these things, with the young people, and with their families. 

First, clearly any autistic young person who has been in secure accommodation will have had a tough time.  Perhaps separated from family and friends. Perhaps coping with living in tiny spaces with terrible sensory difficulties; flickering fluorescent lighting, endless echoing noise from around them.  They may be exhausted and desperate to get to somewhere better...but also very afraid of having the mental and practical resources to cope with something new.

What to do: (This applies to families, and team members, working as a team to support that young person and their own aims, where those are realistic, of course). 

Work out what's possible in terms of the next step.  Find a couple of possibilities for places they could move to.  And find out everything you can about that building and that location.

I start with a personal visit.  

I am using autistic hearing to detect soundscapes that others miss.  
I am using autistic vision to detect flickering or intense lighting that may need thought.
I'm thinking about the odours in a place.
I have a decibel meter with me to measure sound levels, and I'll move from room to room, standing in each corner, seeing what it detects.  
Then thinking, 'is this going to get noisier once people rush hour traffic....if a school nearby has breaks or school traffic....if there's noisy aircraft overhead". 

I'm looking at shadows and thinking about where sunshine may shine in, blinding people.  Where trees are likely to cast shadows in  winds, causing a swirling pattern of confusion on the floor.  All sorts of things can be a 'frightener' for those who see and hear differently, and a lot of those things may be overlooked by non-autistic people.  Not a fault - just a different set of experiences in encountering buildings.  Below, a photo of a surface with leaf shadows on it. Imagine those as a swirling pattern in the wind.  Disorientating for so many of us. So I am working out where a young person may walk, and how to make it safe for them.

I look round the neighbourhood.  What's out there?  If you have someone who loves nature, how do they get there without having to navigate heavy traffic and crowds?  Is there a safe garden area?  What's the sound level like out there?  Is it overlooked by a load of houses or flats, which can be intimidating?   I'm mindful of water, given that a lot of autistic people struggle to see the difference between water and grass (for example) when in sensory stress.  This, how I see a pond and tree, if on the edge of shutdown.  I'm sensible enough to stop.  Younger people or those in greater distress may run.

So somewhere without open water nearby may be a better choice.  Also, think about children's playgrounds. I've seen placements break down because the autistic young person is distressed by playground noise at random intervals through the day.  Think about any autistic young person who sometimes needs to take their clothes off to feel comfortable; are there windows facing onto such public areas?  If so, can those be given obscured glass to shoulder height, for example?

I think about the layout of the property.  Is their bedroom going to be in the quietest possible corner of the property, away from thudding up and down stairs, away from noisy central heating pumps clunking and loos flushing?  Those things can be a living hell for people in a seemingly nice property.  Carpeting can really help with some of the noise transfer from room to room.  In fact, carpeting is one of the biggest obstacles to success, for many.  Highly patterned carpet can make transfer between rooms into a hell.  Rough carpet can cause pain in every single step they take on that surface.  A soft, moderately thick, cleanable carpet in a neutral colour is often a wise choice.  Really soft rugs by the bed help, too.  Those first moments when you swing your feet off the bed.  Think about that bed.  Find a quiet mattress, quiet pillows, a quiet duvet, ultra-smooth sheets and pillowcases.  I'm serious about how noisy some beds and pillows are to our hearing.  Lie on it.  Move. Really listen.  Crinkle, sproing, crinkle crinkle, wonder so many autistic people are awake half the night.

OK, so we've found some possible properties?  Let's show our young person.  No, not in person yet.  By photo and video, description and gentle chatting about it when they can.  A virtual walk through, quietly, slowly, so they can see what's there.  With plenty of time to process it.  No quick decisions.

Let them think about for a couple of days, if possible.
If they want to then visit, you are going to plan this like a military operation.  Er, without camouflage kit and tanks, I hasten to add.

Who is taking them?  Make it their choice of absolute favourite person, their most trusted guide, if possible.  And a quiet kind spare person.

How will they get there?  When?  How long for?  Plan that journey with them.  Google Street View can really help.  Which car or minibus?  What can they take in the vehicle to help them keep their brain operating at its best?  Don't judge.  If it works, it works.  Keep chatter to subjects they want to talk about - their favourite hobby, in ways that they are comfortable with.  Chatter of course can be through technology or picture, sign or sound, not just words.

What will they be wearing for this trip?  Think about their choice of most comfortable outfit possible, including their comfiest shoes and socks etc.  Keeping everything really low-key, really relaxing.  The rest of the day's routine known and predictable.  A known and predictable leaving time, arriving time, amount of time there. returning time, and what's next.

Let them know how to signal they need to leave, and give them confidence that they can do so any time, without fuss.  If they can't make it in through the door, totally OK.  Never knowingly overface them unless there are 'life or death' reasons to do so.

Let them know where a quiet corner in that new place will be, if they just want to 'be' in it rather than explore.  Or back to the vehicle to chill out for a while.

Don't pile a load of choice onto them, e.g. "What colour would you like the walls, do you want to choose a new sofa, where do you want your bed", etc.  First visit, their brain is filling with the sensory stuff.  Add social stuff on top, and it's risking a brain event.  If there's others in the accommodation, best if they can be doing something quiet elsewhere, where possible.  Lots of us benefit from a choice from only two options, rather than endless ones.

Know your young person.  Watch for signs that they are reaching 'can't ' and work with them to guide them back to the vehicle and back to their current accommodation, quietly and gently.  Keep chatting to an absolute minimum.

You may have to repeat that a number of times to get them feeling really confident that they can go there, cope, and return.

Think it's going to work?  OK, who's going to be their fabulous, kind support team in that new location?  I'm not that interested in how many behaviourist qualifications or autism qualifications people have. In fact, behaviourists often have to unlearn most of their training to be any use to autistic people, as they are trained to alter who we are, not think about their own interactions and impact on us.  Yes, there are some good and kind people out there with a positive-behaviour-support past.  But it's absolutely no guarantee of that vital relationship and trust.

Aside from essential training and essential safety checks,  I'm interested in one thing. The only thing proven to be a factor in success: are they someone I'd trust with my young person's life?  Are they the sort of person who is just so pleased to be in the life of this young person, and wants the very best for them, as a friendly equal?  Yes, of course a leader when needed, and a wise guide.  But truly respecting that young person's boundaries and past, and willing to listen, learn, and share cheer with them.  It's that relationship that is critical for this transition to work.  Calm, friendly, relaxed, personally confident but in a gentle way, not an overbearing one. Willing to accept they'll make mistakes.  Willing to take personal responsibility for their fair share of communicating differently.  Willing to let the young person be their authentic selves, in safety of course.  I see rogue teams who strip a young person of everything dear to them to get 'control', with use of restraint, coercion and physical intimidation to get results.  I won't have that.

Any relationship takes time to establish, so your fine young person has to meet them and decide if this is the right person for them.  Or the right team.  Then gradually share more time with them.  Do they respect the autistic person's own communication methods?  Do they understand that autistic people use different body language and movement?  That they have a different culture, a different way of encountering objects?

What about buying them new things?  Please don't whizz them straight out to the shops.  Those are sensory hell. 

What do I mean?  Watch this.  Two minutes.  Turn the sound right up.  Brace yourself.

Wow, eh?  That was just two minutes.  Imagine what it's been like in some care settings.  Imagine what it's like in noisy 'social spaces'.  In supermarkets.  In some shared accommodation with shared eating spaces.

So much can be looked at online these days.  If they really really want to go to a shop for new things for the new accommodation, plan it as carefully.  Walk them through all the steps, online.  Work out whether they will need noise cancelling headphones, sunglasses, baseball cap, or whatever else works to take down sensory load.  Watch for their signal that they need to get out of there fast; some will not know their own boundaries with this, so plan a short visit at a quiet time of day.  And absolutely loads of downtime afterwards with their favourite things.  It's as exhausting as running a marathon, for us.

There will be some back-steps as well as successes.  Let them know that they can trust you.  That you're not going to push them further than they can go.  It may well trigger big anxiety for a while, so being that utterly reliable presence will get them through so much.

Let them be them.  Not some non-autistic person you'd prefer.

You've no idea how much of a blessing it is to be allowed to be us.  Us, not an inauthentic poor copy of a non-autistic person.  Actually us.  Able to communicate as us, move as us, encounter objects our way.  Learn our way. Socialise our way.

If all has gone well, you may have a young person able to restart their life and really thrive.  Step by gentle step.  With family support.  With good caring teams, good enablement by occupational therapists, trauma-trained & modern-autism-trained counsellor or similar therapists if needed.  Each relationship one of re-establishing 'are you safe?' 'do you let me be me?'  And with trusted autistic specialists who can help interpret, help problem-solve when situations arise.  That's what we're here for.  Vast experience amongst autistic specialists.

These are some possible tips for success, from personal experience, meant only as a thinking point.  It is not in any way meant as individual advice for a particular situation. For that, you'd need to hire an adviser.

You'll have your own ideas, too.  Each young person is an individual, with their own individual path ahead.

Whatever path lies ahead, may your young person truly thrive, and may you as parents or carers find the relief and relaxation, support and cheer you need also.