Sunday 18 September 2016

Autism: Body Autonomy for girls and women

This is an important subject.  I'm seeing a lot of autism colleagues start to talk about it.  We need to talk more about it.

You see, if you are disabled, somehow you lose some of the right to decide who does what with your body.

Friends who are wheelchair users say that fairly often, people will push their chair for them, without permission.  They will also pat them on the head.  Carers may turn up and treat them as a job, not a person.  Dignity, gone.  Personal space, gone.  Freedom of choice, gone.  Rough handling, hardly a cheery word.  An assumption that they all have a low IQ and no speech.

The same is true for a good few autistic people.  Some of the therapies are designed to take all control of our bodies away from us. 
Want to move your hands so that you can sense where they are, in relation to things?  No.
Want to move round the room so you can find out its boundaries in the sensory 'fog' around you?  No.

Want to choose where to look, so you are not overwhelmed by social input?  No, you can look into someone's eyes or be punished if you don't.
Want to decide to wear clothing that isn't searingly painful on the skin?  No.
Want to express the same degree of anger as a non-autistic person?  You can't.  It's deemed 'challenging behaviour' if you're autistic, and you may be wrestled to the ground or have your arms pinned painfully.  You may be force-hugged or have your arms grabbed.  no matter how much it hurts.
People come up to you and think it's OK to move your body to where they want it, without permission.  To do things to you, without permission.   You're not allowed to say no, because you're autistic, you see.

And that constant training that we're not allowed to say's soul-destroying.   It's dehumanising.   It's a total lack of body autonomy.  A total lack of respect for us as human beings of equal worth to others.
We know the statistics for how many autistic women go on to be sexually assaulted or raped.  The figures are horrifying.

It's equally important that boys are taught safe boundaries for themselves, of course.

Some autistic people are very clear on their boundaries, and very assertive.

Others need people to be aware of vulnerabilities.

So, what I teach is a simple list of things to check, in any non-emergency situation:

"Do I, as a non-autistic person, have the right to tell you, as an autistic person, what to do with your body? Or to make physical contact with you to make you do something?
Where is the power in this relationship?  Am I about to misuse my authority over you?  Am I stronger than you, faster, bigger, in a position of power over you, able to use words to win any argument with you?
Is my decision fair?
Did I explain it to you?
Did I give you a chance to explain your own reasons to me?  Either in words, or in the other communication methods you use?
Did I listen with respect, to your words or your other communication methods?
Did we agree between us a way forward, rather than me impose one on you?
Am I using any physical contact with you in a consensual way?
Am I being respectful of your body, your ability to say no at any stage?

Would I do this thing to a non-autistic person?  So what gives me the right to impose it on you?"

There is nothing better, for some of us, sometimes, than a cheery hug agreed between loving family or friends.  Let us decide if this is something we want.  Don't impose it.

It's good sometimes for some of us to allow a genuine, consensual demonstration of something... by guiding our hand to learn a new skill of art or music etc - done safely and properly.  Yes, a therapist is checked and qualified to know what's appropriate and safe to achieve a task.  That's not the issue.  The issue is having it done to us without consent.

There is nothing lonelier than being the only one not hugged, because others are too afraid to go near us.  This is an important point.  Good safeguarding is nothing at all to do with everyone being too afraid to go near one another, under any circumstances.  That becomes the opposite sort of safeguarding problem, where people die of loneliness and the lack of kind human experience.  People who are isolated and lonely live far fewer years, on average.   The 'middle ground' is what we are looking for here.
But...there is nothing scarier than someone arriving into our personal space, without consent...., and doing weird things to us also without consent...then making out that they are a personal saviour of all autistic-kind for their Generous Contribution.  Knickers to that.  To use a phrase. 

We are not your ticket to heaven or a way to get an Honour for your Saintly Behaviour towards us.  We're people.  We may communicate differently and have different needs, but we are not 'less' than you.

Autistic young people need to know that they are able to say no.  That their body belongs to them, not to other people.  And that others are watchful for those who have little regard for these realities.

Teach your young people when it's OK to say no.  Demonstrate respectful boundaries and safe cheery human relationships.  Learn about how we demonstrate those relationships ourselves; we use a different communication system to that of other people.  Ours is not a broken version of yours; ours is genuinely different.

In autistic groups, we don't use eye contact, because we are respecting one another.
We don't face one another to talk, because we are respecting one another.
We don't often move one another's possessions, but play respectfully with our own, alongside others.
We don't overload the other autistic person with 'small talk', because we know that it will overheat their brain wiring.
We don't usually need to say 'I love you' in words, because we demonstrate it with respectful behaviour and wanting to be with someone.  Ours tends to be a non-verbal system.

It's unfortunate that all of this got mistaken for, 'Poor dears don't understand human relationships'.
To us, your non-autistic way of communicating is often rude and disrespectful of us.

Challenge people who do not respect our boundaries
Challenge people who use negative and belittling terms for us.

Thank you for learning about us and honouring us in that.
We're lovely people, most of us.  I am honoured to know so many very kind, thoughtful, empathetic, generous and caring autistic friends and colleagues.
What I want is a safer world for our own children.  They need to grow up knowing that it is OK to say...


Friday 16 September 2016

Autism Safeguarding - Important Checklist re Behaviour Therapies

I have safeguarding training to the same level as Social Services.  I am also a national speaker at safeguarding conferences, and advise churches and organisations nationally on autism.  I'm also autistic.  

I am concerned that some groups are taking autism safeguarding advice from unusual and sometimes inappropriate sources.

In some cases, it's an equivalent of taking safeguarding advice on (say) LGBTQ teenagers from a LGBTQ 'gay cure group'.  Are you are taking your main advice from a group that has no actually-autistic advisers as part of it?  Does the group use originals forms of Positive Behaviour Support or Applied Behaviour Analysis?   Read on.

Autism is a neurodiversity - a natural part of human diversity, not a mental health condition nor disease.  Some 'therapeutic organisations' and care-home providers are jolly powerful groups.  Groups who get themselves into a position where they can effectively silence all actually-autistic voices.  They can then promote only their own therapeutic approaches, and control 100% of the discussion around appropriate safeguarding.  Some of those approaches, done by some of the practitioners, are of deep concern within the autistic communities.  Some are fine.  If you're not an autism expert, you won't know the difference.

Always, always work alongside autistic experts.  There are many of us. We know the difference.

If you are uncomfortable about the way an autistic person is being treated or handled, you should of course use your normal safeguarding process and ask for good advice from the right people.  These notes are not an attempt to override these. They are a way of helping people to think clearly.

Autistic people often have great difficulties with being touched unexpectedly.  It causes intense pain for a number of us. 

A few people are predators, who rely on getting good access to a good number of autistic people.  Such autistic individuals may be a 'perfect victim'.  Too often, autistic young people are trained using methods that teach them they have absolutely no body autonomy.  Some methods teach them they simply must obey non-autistic people at all costs.  The therapies named above are known as compliance-based therapies.  These often use psychology to 'extinguish' any behaviour the therapist deems unsuited to the therapist's/parent's end goals.  Quite often, it is a behaviour that is a natural, important and harmless adaptive behaviour by the autistic individual or not.  Some such therapists, of course, will be respectful, but those ABA and PBS therapies are not the therapy of choice by autistic people (with a very few exceptions).  PBS has no proper research to show that it is appropriate for autism.  It is ABA with some other things included.  (Some therapists will claim that it isn't.  I assume ignorance, in that case.  It's the same basic courses, with the same books and materials, and the same techniques.  The end qualifications are interchangeable on CVs.  Look for my blog on this.

Autistic people in many such 'therapies'  don't get to say no.   Saying no is deemed a 'challenging behaviour'.  Flapping hands is a challenging behaviour. (It isn't - it's an adaptive behaviour so that we know where our bodies are, or so can regulate anxiety, for example).   Failure to make (for us) painful eye contact is a challenging behaviour.  Needing to use touch  - to work out what an object is  - may be deemed challenging behaviour.  The therapies use checklists of how much of this 'challenging behaviour' they have managed to extinguish.. and then declare that the therapy is a success.  "Evidence - based".  Discuss.   Here's some background reading:

As we know, abusive people rarely go straight for a major event.  They spend a long time getting the person to feel more and more comfortable with touch and being controlled.  More and more comfortable with the person getting closer and closer, and using more and more personal ways of doing so.  Repeat 'grooming'. Often in front of others, to say, "No, this is OK - look, no-one's worried by this'.  Sitting on laps, huggy stuff, pulling the person about without consent. Manipulating them into doing what the person wants.  Young people who have been through compliance training may comply without question. 

What happens if someone raises a concern?  An abuser has a standard checklist of things they use to keep suspicion away from themselves.

1)  "I am obviously an expert because I've been doing this forever and have given myself a qualification in it".  Immediately putting the other person in doubt of whether in fact they have just misunderstood what real expertise looks like.
2) "Autistic people need this kind of touch".  Do they?  It's always OK to ask a respectable autism charity such as National Autistic Society, or safeguarding experts.  No-one genuine will try to stop you doing so.
3) A claim that autistic people who can speak are not 'real autistic people', or are unstable.  "Real autism means that someone cannot speak and has a low IQ.  Without our therapy, they would be drooling in a corner all their lives, honest guv'.  Once you have convinced the onlookers that other autistic people are liars, or unstable, whatever concerns they raise can be safely ignored.
4) A claim that autistic people who can speak are manipulative, and out to cause trouble for people.  Again, a way to ensure that whatever concerns they raise are ignored.   Our behaviour can be misunderstood sometimes by others, but that's not 'manipulation'.
5) A claim that autistic people who can speak are incompetent.  Not real experts.   This is another way to ensure that concerns are ignored.  In fact, we're the main experts in autism.  Autistic professionals are the ones who teach the non-autistic experts about autism, including the latest information for diagnosis.
6) The 'Famous Person Gambit'.  'Look how famous I am.  Here's pictures of me with really powerful people.  Here are my awards.  I must be OK'.
7) The 'teaching of the new technique' to others.  Best way to hide an inappropriate behaviour is to make yourself the self appointed 'expert', and teach it to others.  Then, you can say, "Oh but we all use this method". 
8) Claiming that autistic people don't know fact from fiction.  "Poor dears, they get confused".  We're some of the best witnesses on the planet.  It's another way of keeping people away from realities.
9) "I have an autistic relative, therefore of course I am an expert, and safe".  There is no evidence that having an autistic relative stops a predator.  
10) "But they enjoy it!  There are no complaints".  If you have never known anything different to people handling your body without your consent, you think it's normal.  Some very concerning therapies actually teach the young person to smile at all costs and say how happy they are.  Any negative behaviour is deemed 'challenging', and 'extinguished' using psychological techniques.  No, really.
11) Abusive language about autistic people.  "People like that..." "They have no understanding of manners" "They are a tragedy".  That kind of thinking indicates, "These aren't really humans - they are just objects to pity".  No good thing ever came from that kind of thinking.  

The autistic suicide rates are sky high (nine times higher than for non-autistic people), believed to be because of relentless negativity about us and being forced to do things against our will, in environments that are physically painful for us.  There is a huge risk of suicide in autistic communities.  We need to be very aware that a lot of these supposedly excellent therapies have caused grave difficulties for the people they allege to help.  Some of course are good.

If you have any concerns, ask for help from your safeguarding specialists.  Find out which autistic person is working with your safeguarding team.

Remember the Jimmy Savile case.  He was famous and did lots of Good Work.  And look what happened.  Think about all the other very famous people who got away with it, because they were very famous, very well connected.  Everyone agreed they could be trusted, because everyone else agreed it too.  Very skilled at particular things.  Very clever at what they did, and how.  Charming, plausible, friendly, cheerful.  

Yes, it's very embarrassing and awful to be duped by predators.  But it's what they do.  And it's very human to believe them.  Autism therapy and care is often huge money.  It attracts callous profiteers as well as abusers, amongst the good people.

There are of course a large number of excellent, respectful people working with autistic individuals.  I'm going to re-state that, because another of the diverting-techniques is to say, "Oh those autistic people are so negative - they catastrophise everything/they're paranoid".  Watch out for that gambit too. Don't fall for it.

Look for people who work consensually with the person, at their own pace.  In safe settings.  With good training.  In open ways.  Ways that are always open to query and question.  Ways that match with safeguarding principles.  You're looking for organisations that have autistic people working at the top levels, in paid, respected positions.  You're looking for organisations that ask autistic people of all levels of ability to contribute ideas and information, training and materials.  To guide best practice.  You're looking for people who have had safeguarding training and good DBS checks to a high level.  You are looking for autism training from actually-autistic trainers and their recommended allies.  Those factors won't stop the really cunning predators, but it's a start.

It is certainly true that consensual safe touch can be useful for some people in some circumstances as part of some therapies. As part of a proper, thoughtful, process with a measured outcome.

Is there a chance to say or indicate a 'no'?  Or is something happening so fast that the person has no control over it?   You should make it really clear that it is fine to say no.  You should always respect no, unless it is an emergency and our safety is at risk.

These are basics.

Think.  Think really carefully.  

Even if someone is not knowingly working in unsafe ways, it's not OK. Autistic people are not aliens from another planet and for whom totally different rules of contact and respect apply. We're people.  We deserve the same respect as you would give any other person of the same age.   Yes, if anyone - autistic or not - is acting dangerously, of course one would prevent the danger. That's a long,long way from saying that a whole therapeutic approach is appropriate.

Autistic people need body autonomy.  We need the ability to use our bodies and our communication patterns in safe autistic ways, for really good reasons.  We need to be able to say No. No is a full answer.

Ask yourself who is being your 'expert' in autism safeguarding. If you are not taking autism safeguarding advice from teams including actually-autistic people, you're not taking appropriate best advice.

Much to think about, isn't there.

Sunday 11 September 2016

Autism: Wholly inaccurate data on sexual behaviour.

Almost no good research has been done into autism and sexual behaviour.

The existing research typically involves looking at
Young men...
with a low IQ...
in institutions...
...or really small groups where the data is meaningless.

And the data is often acquired by asking their parents or carers about their sexual interests.  Not the people themselves, of course.  That would be too obvious.  Naturally, all the parents and carers would know everything about a person's preferences, wouldn't they...or would they?  Did your parents know everything about you?  Do they now, if they are still alive?

Yes, I used bold for a bit of that, because it's pretty shocking.  It is, isn't it.

There is no good data on people over the age of 39
There is no good data on females. 
There is no good data on the vast majority who have an IQ in the normal or higher range.

I'm not making this up.

I've spent six hours, as a professional, reviewing the modern data we have, and that, frankly, is the best of it.

What it did reveal is something far more interesting.
Just one example:  In the general non-autistic population, some 60% of males would like to be a voyeur, and 50% actually have.  Just under 10% have a serious problem with this behaviour, in fact.  I bet you didn't know that. You do now.

In the autistic population, the figure is much smaller.  In the biggest study, only 13% were involved with voyeurism, not 50%.
In fact, in the autistic populations, the modern figures for 'problematic sexual behaviour' are lower than all the figures for the non-autistic populations

I, for one, am rather unimpressed with a small number of non-autistic professionals.  The few who assert that autistic people are more likely to be 'perverts' or sexual criminals.  We are, by the look of it,  less likely to be so, compared to anyone else in the neighbourhood.  Not a jot of sexual crime from females on the autism spectrum, as far as 150 research papers (and counting...) reveal thus far.

We don't have usable modern data at the moment for the vast majority of autistic people.  Those with a higher IQ than 70.  Those who are female or with a different gender identity.  Those who are older than 39.  Nothing.  We know nothing about those massive groups.  Do we think that Mrs Bloggins, aged 67, is likely to be shinning up a ladder and peering in through the windows of her next door neighbour's bedroom before heading off for the office?  What of Mrs Puddlemore; is she at age 50 leaping about the streets in a rude display of sexualised behaviour before going to Mother's Union?  I hardly think so. 

The notion that all autistic people are young men with a low IQ and alarming behaviours really has to stop.  Only some 1.6% of the two million autistic people in the UK are in care home settings. You did know there's two million autistic people in the UK, yes?  1 in 30.  USA national statistics, which one may assume also apply here.  No it's not 1 in 45 there.  Have another look.  They haven't found the rest of the girls yet.

I'd suggest that almost 100% of our data thus far is based on that 1.6% in institutional settings, in the past..

So, my friends, if someone is trying to generalise about 'all autistic people' being more likely to do X, please give them a very hard stare.  This is already a vulnerable population.  We are already heavily targeted for violence, bullying and sexual abuse.  The last thing we need is the population thinking we're more likely to be sexual perverts or predators.   That would be highly irresponsible, I would say, as well as inaccurate.  What a way to ensure exclusion and targeting.

Arguably, statistically, we'd do better to have autistic people teaching non-autistic ones how to behave, on sexual matters.  Because the sexual behaviour of that big group of the general population is, statistically, pretty shocking.  In fact, I might make myself a cup of extra strong tea...

Thank you.

Thursday 8 September 2016

Autism and Lighting in Buildings

The photo above shows a prison hallway.  Could be any prison, anywhere.  This is how I see it, as someone who is autistic, with visual processing difficulties when anxious.

It doesn't show the intense flickering effect, like a strobe light.   That's fluorescent lighting.  It's nearly everywhere.
It's in schools, hospitals, surgeries, colleges, workplaces, faith centre halls, DWP centres.   Almost any time we are asked to go into a large building, we're faced with this, people like me.

It makes me feel nauseous.  It's disorientating.  Sooner or later, I lose the ability to speak.  I'm desperate to get away from that lighting and its effects.  This is without any other sensory difficulties such as odour, echoing noise, etc.  Some on the autism spectrum will enter a kind of 'epileptic event' if under flickering lighting for too long.  It will look like a temper tantrum, but it isn't.  It's not under the person's control.

Sometimes, the places we need to be the most calming, the least likely to cause difficulties...those are the ones that are the hardest to endure. The most likely to result in people trying to escape, or not understanding instructions.  Appearing to be unco-operative.  Appearing to be disrespectful.  Appearing to be 'kicking off' for no reason.

So easy to sort out.   Fluorescent lighting can be replaced, like-for-like, with LED lighting.  As long as that's not on a dimmer switch, there's rarely any flickering.  Then, use of sunglasses, tinted prescription glasses or baseball caps etc can cut down glare.  That's one less thing to cause difficulties.   LED lighting is cost effective to run, too.

Try to hold important meetings with people in a space with natural daylight.  North facing rooms have the best light quality for this, away from direct intense sunlight.  Somewhere as quiet as possible.  Away from really strong smells, too, where you can.  Think about your own smell; have you doused yourself in aftershave?

Remember when meeting autistic people to give good advance info about what the meeting is about.
Keep to time, or let the person know there is a delay and give a new timing.
Give an end time, so they know how much conversation to prepare for.  Keep to this too.
Don't do eye contact with us. It's respectful of our needs to let us choose where to look, as eye contact is physically painful for us.
Don't read body language; ours doesn't work, so you'll just end up confused or misled.
Give time for answers.  Maybe review answers later on.  Answers in a stressful moment may be 'automated answers', not actual answers. Not lies, just desperation to get away from the scary questions.

People working in buildings with low echoing and better lighting all benefit.  Not just the probably-one-in-30-people on the autism spectrum, who may have sensory/light sensitivity/pain difficulties.

Find out more from a good autistic buildings access person.  Autism Oxford UK provide this kind of service, for example.

(PS...when you saw the picture of the prison, at the top, what was your thought about who is autistic?  The prisoner?  Autism is nothing to do with a greater tendency to criminal behaviour.  Most autistic people are extremely law abiding.  Most people in prisons are not prisoners.  They are guards, admin people, physiotherapists, Chaplains, contractors, visitors, medics.  Anyone, anyone at all, could be autistic.   1 in 30* of anyone at all.)

*Yes, the official statistic is 1 in 100.  That's a very old statistic, based on figures before we understood autism often presents very differently in women and in many of those with a 'normal IQ'.