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.