Saturday 25 May 2019

Panorama & Beyond: Treatment of Vulnerable People in Care Homes & ATUs.

In the UK, the BBC Panorama team investigated a secure care setting.  In it, various autistic people, and people with learning disabilities.  They had sent in a 'secret care worker' who had recording equipment.  She noted a culture of appalling abuse of the people living there.  Humiliation, violence, inappropriate use of restraints.  Not just from one or two members of staff, but a whole culture. gives some more background.

On the wall of one of the rooms, inspiring words were written.  The picture above, taken from the documentary, shows some of them.  Safe, Respect, Fun, Choice, Meaningful, Person-centred.  Accountable.

Great words.  But entirely not what was happening.

Care homes are inspected by a organisation called the CQC.  is one of their reports on the centre.  One of the findings from the inspection team. Between November and January  - at most three months - there had been 92 'reasons' for restraining one particular person.  Averaged, that's pretty much every single day, whichever way we look at it.  Restraint is terrifying, overwhelming, painful.  It can take days to recover from.

The inspection team were told by the manager that this was normal for patients with complex needs.



As well as being an international level and qualified autism professional.  I spent many years working as a specialist in anti-domestic-violence work.  I co-wrote national policy for organisations.  I worked with the Mayor of London's teams.  I was a Trustee of one of the major regional charities, with day to day responsibility for the safety of domestic abuse victims.  Some of the cases I was involved in were ones where we were at the Royal Courts of Justice, so working with Barristers in the top Courts in the land to ensure that cases were heard and case law changed.  There were countless hours spent listening to victims explaining how very plausible abusive people are.  How no-one would believe them, because of their abusers' plausibility.  How they would be portrayed as unstable, as needing 'support', as needing whatever-happened-to them.  How any attempt to speak out would be met with punishment.  How saying nice things about their abusers was the only way to survive, the only way to stay safe. 

If someone has the keys to your bedroom and the right to do anything they like to you and call it 'care', you have no true voice.  None.  If the people around you do not know how to interpret autistic language and behaviour, what little voice you have is silenced utterly.

That dynamic is the one that allows some care homes and ATUs to become places of fear, tyranny and hell for the most vulnerable in our society.

I want to be clear that some care homes are fabulous, and some staff are fabulous.  Many are just ordinary, and doing a good-enough job.  That's fine.  Many good people doing what they do well, despite budgetary pressures and staffing pressures.

But some are places like Whorlton Hall, and inspection teams seemingly haven't a clue what they are looking at.

That worries me.  I'm part of inspection teams from another organisation that  'troubleshoots' care in some such centres.   I see some of the complex cases, and get to meet a lot of the fantastic autistic people and people with learning disabilities who are in such settings.

And I see some who are deeply afraid of their carers.  So afraid that they daren't say. Their fear is palpable, but people are busy listening to the plausible-charming-abusive-carer, who tells them that the autistic person is the Real Danger, really needs that abusive treatment.... in fact, it's prescribed by their Psychiatrist.  Glad to work with investigative teams that see right through it.

There is no reason to restrain people unless it is an absolutely dire emergency and there is no other way to safeguarding that person or those around them.  If someone is having to be restrained every day, that is a very clear safeguarding situation that should have triggered immediate investigation and complete review of environment, staff, medication or any other factors.  

In the decades of working with autistic people I have never had to restrain someone.  Not a boast. A reality of knowing how not to trigger brain events.  And a reality of being genuinely delighted to meet them and very respectful of their space and possessions, aware of the culture and communication of autistic people.  When to back off, when to be especially careful about the overloading effect of even-accidental eye contact.  Speaking gently and slowly, from genuine honour at being in their presence.  So many in such centres meet the diagnostic criteria for PTSD, according to the specialist, and thus a gentle, cheerful, well-explained, consensual low-trauma approach is absolutely vital wherever humanly possible.

There is also no reason to hold people effectively prisoner in environments that are entirely unsuitable for autistic people.  Noisy, chaotic, lit by flickering hellish fluorescent lighting that can trigger 'meltdown' brain events time after time for some autistic people.  These are the worst environments imaginable for recovery and wellbeing, even without adding abusive staff.  Above is a photo that may help explain sensory overload in some environments, for some autistic people.

So, what do we make of the inspectors from the CQC being told that it was all perfectly normal and believing that  - despite apparent multiple whistleblowing reports around concerns?

I suspect that the CQC could benefit greatly from core training around:

1) Autism.  A modern understanding.  Here is your reading list. It is a brain difference, not a mental health condition, not a cause of 'naturally violent behaviour'.  Many of those with learning disabilities are also autistic, some undiagnosed.

2) Domestic abuse.  A clear understanding of how abusive people can be the most plausible people in the world. Really nice, really charming.  An explanation for everything.  "Of course it's normal to do this to autistic people or those with learning disabilities.  It's what they need.  It's normal for them to be in meltdown all the time.  It's normal....honest it it..." No, it's not.  It's distress behaviour, or a brain event after being put into intolerable social and sensory hell.

3)  Embedding autistic people and highly specialist teams properly in the review process, up to and including at the highest level.

I contacted the CQC to ask if our international team could be of assistance to help with the current situation after the Panorama programme.  They offered me a chance to apply for a part time low paid job going into care homes. 

I'll leave you to think about what that means.  I found it both amusing on a personal level, and one of the most concerning things I've ever received.

I don't need the work.  I do need autistic people to be cared for safely.  This is a strategic matter, a matter involving a profound error around autism and autistic people, it would appear.

That could have been my own child in that centre, being held on the floor by jeering staff for half an hour whilst they handed round gum and applied psychological torture.  That could have been my own child terrified in her bedroom, with a huge bloke blocking the doorway, taunting her over and over, with her screaming in fear.

That could have been your child. 

I would strongly recommend that these 'treatment centres' are closed.  My voice adds to those in Government and charities who have been calling for this for a very long time.
I hear too much of, "But these people wouldn't be safe anywhere else - there is nowhere for them to go."

They are not safe in those centres.  They are not recovering in those centres.  They are not thriving in those centres.  There is no sign of those centres being closed, as per reports and recommendations.  The breathtaking money spent on those centres and the alleged-care and alleged-therapy (mmm, no) could easily be spent on individualised care and support in peaceful, gentle surroundings near to home and community.  A bit of thought would do it.  And goodness me, we have enough specialist knowledge available to achieve it.  We're not even trying to engage with that help and support.  Instead, we're holding 'consultations' over and over.  What on earth for?

I remain deeply concerned about the political and financial power of a particular 'therapy'.  When some of their teams can be paid £500,000-plus per resident per year to apply this mysterious 'therapy', there is one heck of a reason to keep those centres going, isn't there.  The core 'therapy' doesn't even work, but commissioners are told it does, and that apparently is what matters.  It's a racket, in my view.  One costing lives.  One certainly leading to a negative view of vulnerable people as a set of 'behaviours', not as people of integrity, love, caring, gifts.  These are individuals who are genuinely different and in need of teams around them to respect them and support them, rather than critique and control all day with a view to normalising them.  We need to put the Positive back into lives, and the Support back in, for sure.  We're a very long way from that, with some of the alleged-therapies bearing those words.  I've blogged on PBS and what it's too-often becoming.  Those concerns remain.

I've been very fortunate over the last years to have found so many highly professional, respectful and caring colleagues and contacts in the caring and medical professions.  I share their concern about all we see in such documentaries.

Working together with them is what makes a difference.

Let's do that.  Because our most vulnerable deserve a life where they can be their authentic selves, in settings that enable them to flourish.

Thank you for reading.

Monday 13 May 2019

Autistic People. So, new Research. Different social skills, not broken ones.

Two people sitting side by side at a park bench table.  We can only see part of them. There are cups of coffee.

For decades, autistic people have been told that our way of socialising and co-operating is a broken version of the 'real thing',

Many autistic people have been put through endless coercive techniques to correct this alleged set of problems.  Children have been put through year after year of exhausting therapies to make them co-operate and collaborate exactly like so-called Normal Children.  Yet, curiously, we weren't seeing good outcomes.  We are seeing deeply concerning rates of mental health difficulties including worrying links to suicide and PTSD.  So, what's been going wrong?  Why aren't autistic people any better off after all this enforced normalisation?  Weren't we supposed to be happy and integrated now, with better jobs and better social lives?

What went wrong with the theory?

This year, at the international autism conference, INSAR 2019, a session and poster by a team of well respected researchers at the University of Edinburgh who dared to question this idea that autism  = broken social skills.  They are presenting their research at various events.

"In essence, what we are demonstrating for the first time is that autistic people's social behaviour includes effective communication and effective social interaction, in direct contradiction of the diagnostic criteria for autism. We have, for the first time, uncovered empirical evidence that there is a form of social intelligence that is specific to autistic people."

In other words, different social skills, not broken ones. We have our own social signalling and can co-operate and interact effectively....with each other. Likewise, non-autistic people can generally co-operate and interact effectively...with each other. But put one of each group together, and they both tend to misunderstand one another. They don't feel rapport with one another, that sense that you just 'click' with someone and understand them.

This isn't a new theory, of course. Dr Damian Milton has been discussing Double Empathy theory for a while now.  

Shall we take a moment to shuffle uncomfortably in our seats, reflecting on the endless books, articles,training programmes and materials describe autistic people as deficient in social understanding? All recommending that it's the autistic people who do 100% of the changing?

Actually, autistic people generally understood each other well.  We always have.  The problem is that the non-autistic people didn't understand us.

And we didn't understand the non-autistic people.

So, may I invite researchers, writers and trainers to take a deep breath, and decide to look anew at autistic people?

What's needed is interpreters and social language experts.  Those who can skill both groups in the 'language' of the other group.  Those who can meet people from the other group and say, "I would love to learn your natural communication style, as a new language, a new way of interacting.  And I would love to show you our own way of communicating, which is different.  Together, we can learn not to misunderstand one another, and both of us can learn to communicate more effectively with one another.  Together, we can both learn how to be friends, colleagues, and do great things together."

Can we do that? 

I think we can.

Thank you for reading.

Sunday 5 May 2019

Primary School Age Child - Might They Be Autistic?

Some professionals and parents have been given autism 'checklists' that are 20 years out of date. Not at all useful when trying to make a decision about whether a child needs a diagnostic referral. The checklists were full of language so inappropriate and humiliating for any child that one must hope that there is a push to do an updated list, very fast.Autistic people are of every age, gender, personality type, e.g. extrovert or introvert, and of all ethnicities.  Autism is difference from birth onwards, for life, not a disease or deficit.  There are strengths for many, as well as a need for support with some things, for others.

This is an informal guide, intended to help professionals consider whether a  child may be autistic. 

It is not intended to be used alone, but to help professionals recognise a pattern of differences in social and communication skills, together with intense focus on topics of interest,  differences in sensory processing, and a need for structure and routine. It is important to be working with parents and carers, and asking good questions of the child, either using spoken language or any other preferred communication method for that child.  A decision can then be taken as to whether to refer on for formal diagnosis.

Social Communication:

Autistic children may use social communication in different ways. There may be a different use of eye contact, preferring to look at a person using indirect gaze rather than direct gaze, in order to minimise sensory distraction.  

There may be little or no spoken language, or an unusual tone or accent that doesn’t have another social or cultural explanation.  Speech may have highly focused and technical content on specialist topics.  Some may use repeated phrases as a way to understand content and convey subtle meaning.  Autistic children tend to be direct, and are unworried about social rank and status.

Autistic children may have a different understanding of personal space, and may prefer to stand closer or further away than is the social norm for non-autistic friendship or acquaintanceship. 

Generally autistic children can understand, co-operate and form friendships with other autistic children, but there can be miscommunication between autistic and non-autistic individuals as a result of the social difference, and misunderstanding of autistic moods.  For example others may misinterpret autistic children as angry, when they are using a different tone of voice or volume. Others may also misinterpret autistic distress, meltdown or shutdown as anger or as a direct refusal to co-operate. Meltdown and shutdown are brain events, not choices.  Meltdown may look superficially like a temper tantrum but is entirely out of the control of the child.  Shutdown involves not being able to speak, or possibly move.  Again, out of the control of the child.   

Some non-autistic children may take a fairly instant conscious or unconscious dislike to the autistic child, because of the different social signalling, and refuse to play with them.  Such problematic responses from others are often a significant sign of possible autistic difference.  

Movement and Sound

Autistic children may use body movements, or  repeated noises, to self-regulate, stay focused, and be in touch with their body positioning and balance.  These are called stimming, and are a normal part of autistic life.


Autistic children may need very precise instructions, and may understand phrases and words literally, rather than look for ‘hidden meanings’ or metaphors. 

A different way of playing

In play, autistic children tend to focus on learning one particular skill at a time, and will apply intense dedication to doing so. Getting things right is vital, to most autistic children, which can lead to extreme focus to find answers and improve on things that are not 100% correct.  A specialist mindset, therefore.

A different sensory experience

Autistic children tend to have sensory differences that mean they can be very undersensitive or oversensitive to particular sensory input.  For example, sensitivity to flickering fluorescent lighting, the feel of clothing, odours, tastes, textures or to background noise. Spaces that many other children can cope in can be overwhelming and painful to experience for some autistic children.  Eating and drinking can be a sensory challenge that results in anxiety around food, especially in busy noisy spaces.

A different degree of need for predictable social and sensory situations.

Autistic children prefer known situations and known environments, in order to minimise possible sensory and non-autistic social overload, and therefore may reach a state of great distress if pushed into fast changes. Most can adapt to change if given careful explanation including possible sensory or social hazards ahead.

As stated, this is an informal guide. But it will get people a fairly long way towards identifying possibly autistic children, and getting that good diagnostic advice.