Tuesday, 11 June 2019

Sharing life with a dog. An autistic guide.

I've shared all of my life with dogs.  Well, and cats, er, and horses [hairy rescued ones, not £multimillion shiny ones]...but this blog is about dogs, and autistic people.

Some charities are edging towards a proper 'guide dog' service for autistic people.  Some are providing assistance dogs for autistic people already.  Some are helping families choose a really good family dog and understand how to settle them in to a household with autistic children.  All of that is great, if the trainers really truly understand autism, and understand how a dog can fit in with it.  I've worked with assistance dog charities as an autism adviser, so it's a subject close to my heart.  And, of course, I'm autistic. (And MD of a national company & an autism professional working with many of the top names in the country). 

What concerns me is that some groups and individuals have seen this as a money-making venture.  Some families have been given a half-trained unsuitable dog with health problems, with almost no after-support, and asked to pay a breathtaking sum for the privilege.  Result - dangerous dog that has to be given away, and children now terrified of dogs.  Not good.

Other trainers are of course thoroughly professional and work with the families carefully and sensibly.

Be cautious.  Like the car stickers say, a dog is for their whole life, not just as a treat.

Firstly, if you want a dog, you have to be totally, utterly realistic about what's ahead.
Are you ready for...
A puppy who may bark or otherwise make noise for hour after hour.  If you have anyone who is very noise-sensitive, this may be a no.
A puppy who needs month after month of toilet training, leaving you to clear up after them in the house?  And who you will have to 'poop scoop' after, for their whole life?
A puppy who is going to need down-time away from noisy active family members, and who will need to be safe from rough play.
A puppy who will need gentle training to be a sensible family member with good manners.  Maybe lots more training if they are to assist with specialised tasks in the house.
A dog who will need walking enough every single day, or equivalent fun exercise, in lashing rain, in freezing cold, in snow, in whatever cool you can find in the early mornings or late evenings of hot days?

A dog who needs enough space to exercise a bit in house and garden, with safe fencing from which they cannot escape, and freedom from danger in that space.
A dog who will shed hair.  Lots of hair.  Hair everywhere.  Yes, some don't shed hair, but probably need expensive clipping and grooming instead.
A dog who will need brushing, and nail clipping, and bathing, and teeth care, and ear care.
A dog who may well dig up the garden, eat the flowers, nibble the furniture or your shoes, especially when young.  Thinking ahead to keep them occupied on better things is the knack.  Also, keeping non-chewable things out of reach...(and it's amazing what a determined dog can reach...)
A dog who will need expensive food and great thought as to what, and how much, and when.
A dog who will need you to look out for them, helping them stay safe and well.

A dog who will need company nearly all day every day, as they are pack animals and thrive in company.  What happens when you are on holiday?  What about if you're ill?
A dog who will need expensive veterinary care.  And maybe a lot of 'nursing care' from you if they become ill or injured.  They'll need vaccinations, worming potions, anti-flea and tick potions, etc, according to the advice of the vet.
A dog who will need games and entertainment, occasional dog-friendly treats, safe chewing toys etc.

A dog who will get older, and for whom you are - one day - maybe going to have to make a tough decision for around their quality of life...

If that sounds daunting, it's meant to be.  This is an epic commitment.  8-12 years, on average, of that commitment.  Maybe up to 15+ years for some breeds and crossbreeds.

And worth every second of it, for those of us who have shared the joys, the dramas, the ups and downs of life with a family member.  That so many people do this, and repeatedly, says something about how worthwhile it is for dog-appreciating-families and individuals.

What can dogs bring to autistic life?  We've never had a formal 'assistance dog'.  Our dogs are family members, sharing life with us in ordinary and relaxing ways.  But they've been fantastic additions.  One of them self-trained to interrupt me if I was over-concentrating on something and needed to move for a while.  One of them self-trained to fetch me if the food had cooked in the kitchen...almost to the second of how long it needed to cook for and without any alarm or reminder.  All acted as my eyes and ears in busy, noisy places, where I can become blinded and deafened by the sensory environment.  A literal guide dog (although there's not enough understanding in the charities of this function as yet). 

Nothing to do with me training them in some assistance-dog way myself.  Everything to do with them being cheerful observers of useful things and problem-solvers, allowed to think for themselves and work out how we all share life best.

They are also such an important addition for companionship.  So many autistic people find busy social events are too  much, and random conversation with strangers to be a huge strain.  We socialise differently, with different body language and different face expressions.  Non-autistic people tend to respond badly to that, but dogs are fine with it.  And, a dog is a great source of conversation with people, too.  Other dog owners like a chat about their dogs, generally.  Dogs also don't mind me talking to them about my day, my favourite subjects etc.  

What I don't like seeing is dogs used as a way to enforce 'normalisation' on autistic children.  I've seen a few examples of this.  The dog trained to interrupt an autistic child who is using repetitive movement to centre themselves and locate their body, for example, because the parents want the child to appear normal in public.   Or the dogs used as an 'anchor' to stop a child from moving out of a painful and terrifying environment such as a shopping centre.  That's an inappropriate use of dogs.  Autistic people need to be able to be themselves and stay safe, and those must be the aims of any dog companion.

When acquired as a genuine and respectful companion, a personality to share life's journey with, dogs are fantastic.  Well, for those that like dogs, of course.  It's OK not to like them.

So, if that checklist doesn't scare the proverbial life out of you, and you truly think your family can cope with that list for 8-12+ years, how to get a dog?

There's pre-loved dogs in rescue centres, of course.  We've had some.  That's not a novice thing, quite often, though. You don't know about the health of the dog, or whether they have had terrible trauma that may mean many months of anxiety to work through.  They may have been given away because the family didn't train them or entertain them or socialise them with other dogs, and they eat the house and terrorise the neighbours.  Or you may be lucky and find a lovely one.  But it's a tricky thing.  Only do it if you are sure you can spare all the time, energy, commitment, money and training-power to help the dog settle into a new, safer, better life.

There's puppies.  Beware of 'puppy farmers'.  They are very clever indeed, and know how to put up pics of cute puppies.  But those puppies were bred in filthy terrifying conditions from exhausted mums, and taken away from mum way too soon.  You'll have an unhealthy pup with personality difficulties, probably.  Disastrous and expensive.

Look for really, really responsible breeders.  Ones who will quiz you at great length about how suitable you are.  Whether you have a big enough house/flat/garden for whatever dog this is.  Every aspect of how you will care for the dog.  They will want you to see the puppies with their mum, and the place you see them will be clean, and warm, and dry.  Mum and puppies will be relaxed and cheerful, happy to see the breeder, happy to see you, and clearly this is the actual mum, not a spare dog they put in the room (yes, seen that one done...).   The breeder will talk to you about what they want the puppies to have as vaccinations etc ,and what food to give them, and what exercise to start when.  They'll want to know which dog trainer you may use, and may want veterinary references if you already use a vet.  They will want to see the whole family, and may send someone to inspect the house.  Daunting, for sure - but they are handing you something precious, a life that deserves a family filled with love and safety.  Many who breed puppies regularly will have licenses from the local Council to say they are properly inspected.  Watch out for breeders who won't show you Mum and pups together with some bizarre story or other.  That's never OK.  Watch out for breeders who are vague about whether the pups are properly registered as one of their breed, if it's a proper dog breed (pedigree).  Or who are keen for you to pay in cash, and promise to send you the paperwork in the post...that's a no.  Vague excuses = run away!  Also beware of puppies that seem really quiet and 'out of it'.  Or sad, or otherwise unwell.  They should be happy, healthy, wonderful.

Get good books on dogs.  Watch videos.  Talk/communicate with dog owners online.   If you are keen on a particular breed, find out everything you can about that breed.  Go to dog shows and meet some, maybe.  Be realistic.  Some dog breeds are definitely for extremely experienced owners with endless hours to exercise them.

Breeders, if you are selling to a family with an autistic individual, bear in mind that nearly all autistic people are adults, not children, and most are the most honest, caring, thoughtful and sensible people you'll ever meet.  The myths about autism are awful.  But do check carefully about whether health and ability of anyone - autistic or not - would affect the care of the dog.  It's always OK to ask.

And, potential dog owners, be prepared for a fantastic and wonderful and expensive and exhausting and amazing time ahead.

Thank you for reading.

Friday, 7 June 2019

The incorrect idea that autistic people are naturally horrible

Picture of a woman walking alone down a path in the rain, carrying a rainbow coloured umbrella

One of the oldest of the myths about autism is around alleged deliberately-abusive-behaviour from autistic people.

I want to talk about this.

We've had a few people who truly thought this was correct, and wrote books, blogs and other material on the subject.  Some called it 'Cassandra Syndrome', and then changed that name to 'Affective Deprivation Disorder', (AfDD). both entirely made-up things.

http://www.maxineaston.co.uk/cassandra/ needs a content-warning.  In this, various pieces of out of date and incorrect information combine.  Here is an extract.

"AfDD is about emotional deprivation caused by living in an intimate relationship where the one partner is affected by a low emotional intelligence or Alexithymia.
My research strongly indicates that AfDD can develop as a consequence of being in an intimate relationship with an adult with a disorder that produces a low emotional/empathic quotient or Alexithymia, a Greek term meaning literally without words for feelings (Parker, Taylor and Bagby 2001).
Alexithymia levels found in Autistic Spectrum Disorders are [85%] (Hill, Bethoz and Frith 2004), Anorexia Nervosa [63%] and Bulimia [56%] (Cochrane, Brewerton, Wilson and Hodges 1993), Major Depressive Disorder [45%] (Honkalampi et al. 2001), Posttraumatic Stress Disorder [40%] (Shipko, Alvarez and Noviello 1983), Panic Disorder [34%] (Cox, Swinson, Shulman and Bourdeau 1995).
The prevalence of Alexithymia is highest in people with an Autistic Spectrum disorder (85%) which is further hindered by a lack of theory of mind (Beaumont and Newcombe 2006)."

Let's have a look at this invented 'disorder'.

Firstly, autism itself is not a disorder.  It is a neurodivergence.  We are autistic for life, from birth, and it is a genuinely different way of communicating.  See https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html  for a huge amount of info on the positives and differences, from actual modern research.
Second, autistic people may need time to process emotions and to be able to describe those in words.  This is not the same as having no emotions, or not caring, or having 'low empathy'.  Emotional responses may be shown through autistic communication, not through language.

Both parties  - autistic and non-autistic, have a different way of expressing emotion, and a different set of basic relationship needs.  Both have different ways of using eye contact, face expression, body language, body positioning, use of touch, voice tone and language.  To work a good relationship with one another, both parties need to realise that the other is different, and both parties need to find ways for the other person to thrive.  Therefore both parties are potentially 'low' in empathy for the other party, not just the autistic person.  I would strongly advise searching online for the Double Empathy work by Damian Milton. http://www.thinkingautismguide.com/2019/05/the-problem-with-autistic-communication.html  is also helpful.

Yet, if you follow those research links in my other blog, it's clear that most autistic people do not in fact lack empathy at all. (Using the word 'empathy' to mean caring about what happens to other people, rather than technical versions of the word).  Most are deeply caring about others, and deeply helpful.  Most give generously to charity, most are very fair, most are very honest and keen to see social justice.  But...they may not be able to 'perform empathy', in the expected ways.  And there will be a cultural expectation from the autistic person that their partner will state their needs.  This is actually really simple.  "I need a hug now".  "It is our anniversary soon and I would like...".  These are not world-ending things to attempt.  In both-autistic relationships, frequently there's great success, because both generally can learn quite fast how the other communicates.

There is also a 'before' to this.  Whilst some claim that they had no idea whatsoever that the autistic person was autistic before (e.g.) marrying them, I would suggest that knowing almost nothing about your partner before marrying them is not something to blame entirely on their partner.  A number of autistic people certainly can 'mask', out of terrifying fear from a lifetime of violence, assault, bullying and exclusion, defrauding, ostracism and worse from some non-autistic people.  But those are almost impossible to keep up for long without absolute exhaustion, shutdown or meltdown.  Certainly some autistic adults don't know they are autistic, and some end up with other diagnoses because diagnostic teams haven't been good at spotting (e.g.) females, extraverts, People of Colour, etc who are autistic.  But if you are utterly incompatible, emotionally, the time to say this is a bad relationship is probably before you move in together. 

I see some who claim that their partner is autistic because they are deliberately nasty and abusive, violent or otherwise.  When quizzed on this, generally they reveal that actually their partner has no diagnosis, and this is just what they've been told by someone who believes in Cassandra Syndrome.  Shocking stuff, actually.  There is no link to greater deliberate violence because of autism, in any research at all.  If an autistic person enters a brain event called a meltdown, it's linked to spikes in brain electricity, on the latest research.  In other words, it's similar to a form of epilepsy, not a choice.  Not that many autistic people have such meltdowns.  In surveys, some 7 out of 10 report they have shutdowns, where they cannot talk or move much, as part of this.  Not exactly dangerous....

In the same way, a friend who is diabetic may enter a seemingly angry state when their blood sugar level is wrong.  That's not them being deliberately horrible to control you.

Could, in theory, an autistic person also be a nasty person?  Yes, but no more likely than anyone else being a nasty person. Being autistic is not the cause of nastiness.

As for a lack of theory of mind, no.  Research shows clearly that by adult years, autistic people are fine with understanding that others have different needs and beliefs.  It is a difference in how our responses look, and what we can manage in different environments - not a cluelessness.

So, Cassandra Theory is a mess.  Autistic people generally have terrible outcomes in life.  Average age of death believed to be around the mid-50s, because the stress, strain and suicidality that results.  That's not evil on our part, nor is it a lack of caring or a lack of effort.

Let's look at something helpful instead.

If you find that you are not understanding your partner, and it's distressing, you can seek good help and support from an autism-trained, gentle, affirming relationship counsellor.  There are some out there.

You can read materials written by autistic people around relationships.
You can work on communication together. 

You can learn to ask good questions of one another, using whatever works (which might be by text or email rather than spoken language, as autistic people may genuinely not be able to use spoken language when exhausted or in sensory/social overload.)

You can learn that an autistic person fleeing from a party or other social gathering is not a sign of lack-of-effort or lack-of-caring, by watching this https://vimeo.com/52193530 with the sound turned up as loud as you can handle without running out of the room yourself.
Two minutes of the most powerful animation I know, explaining how the world is for an autistic young person.  They're not 'failing to care', they in absolute nightmare amounts of pain and distress.  The 'failing to care' isn't happening from either party here; after all, the non-autistic person did not know that their partner was in that much pain and distress.

You can learn that an autistic person failing to put the bins out is not a sign that they wish to dump all the tasks on you, but may be a function of being overloaded with sensory/social input, crashing their brain's task-doing centre.  There's ways to work with people to get the right balance.  Or to agree to get in some outside support, where available.

If you decide you cannot continue in a relationship, fair enough.  A number of relationships do fail, whether autistic or not.  But blaming 'autism' isn't OK.  Research has moved way, way beyond those old myths of the uncaring partner.  Autism was never that.

Thank you for reading.

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. https://www.bbc.co.uk/news/health-48369500 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.  https://www.cqc.org.uk/sites/default/files/new_reports/AAAH3380.pdf  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.   https://annsautism.blogspot.com/2017/04/autism-aba-and-pbs-some-questions.html

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. https://kar.kent.ac.uk/62639/1/Double%20empathy%20problem.pdf  

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, "You are wonderfully different.  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.

Friday, 19 April 2019

Autistic children - Are we helping them after trauma? PTSD. cPTSD.

A sad child looking out of a window

"Currently, there is no evidence based practice for the treatment of trauma [for autistic individuals]".

Those are words from a recent paper looking at ideas for how to help autistic children who have experienced traumatic events.  The paper, by Slack and Lucyshyn (2018), can be found at  https://link.springer.com/article/10.1007%2Fs10803-018-3854-9

I must admit that when I read this, I didn't know quite what to say.

We know that autistic children experience high levels of bullying.  We know that they are seen as a target by predators.  We know that many show distress behaviour, and many express a wish to end their own lives.

We know there is likely to be an autistic child in every classroom, from the most recent research into numbers of autistic individuals.

But no-one knows how to help an autistic child who shows signs of trauma (for example Post Traumatic Stress Disorder or complex Post Traumatic Stress Disorder (PTSD, cPTSD)?).

What are PTSD and cPTSD?
From an online article linked to in the paragraphs below, "PTSD usually develops after someone sees or experiences a terrifying or life-threatening event. After that initial episode, any reminder of it can trigger panic, extreme startle reflexes and flashbacks. Beyond that, however, there’s a wide variety in the way PTSD manifests: It can lead to hypervigilance and anger; it can cause recurring nightmares and other sleep issues; or it can lead to depression, persistent fear, aggression, irritability or difficulty concentrating and remembering things."   cPTSD happens for some after enduring multiple traumatic events or one really long traumatic event, from which there is no escape, for example.

There's more information on PTSD and cPTSD at https://www.mind.org.uk/information-support/types-of-mental-health-problems/post-traumatic-stress-disorder-ptsd/complex-ptsd/#.XLlvvOhKjIU

What does PTSD or cPTSD look like, in an autistic child?  We don't know.  No, really, we don't know.    This is explored in this article, which also lists some of the common ways that PTSD is experienced.  https://www.spectrumnews.org/features/deep-dive/intersection-autism-trauma/

Why don't we know what PTSD looks like in autistic children?  Why don't we have a clear idea how many are experiencing it?  I sense that this is because of the deeply problematic core belief in society that autistic distress is a 'problem behaviour' that is to be trained out of us.  Looking at that list, anger, depression, aggression, irritability, panic, hypervigilance.... I'm mindful of how many behavioural-intervention checklists I see where those items are listed as 'autism symptoms' and the individual is relentlessly trained and rewarded for making their internal terror invisible to outsiders.

In a quest to find something, anything, helpful, I followed a link to Shaffer et al's recent paper (2018) proposing a new treatment regime (in part ABA based) for emotional regulation, which some believe is a way to treat trauma. The link is here  https://link.springer.com/article/10.1007%2Fs10803-018-3727-2

It looked at 34 children with combinations of diagnoses of autism, or ADHD, or conduct disorders, or depression. In other words, so varied that any results would have been impossible to unpick, I suspect.  26 male, 8 female. Age 8-12.  The parents were asked about the child's angry or defiant behaviour, and the parents were asked about their own quality of life.  Then an intervention was done, and the parents were asked to rate the child's behaviour and whether it improved the parent's own quality of life. A brief clinical improvement score was also given (the CGI-I). We are not told whether the clinicians had any deep modern understanding of autism.   The CGI-I's general use is discussed here :  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2880930/   It's a basic measure designed mostly for illness, and is around 'is the patient better than last week'?  No mention of sensory needs or adaptations, just behavioural and psychological interventions.  One could question whether a medical checklist is appropriate for a neurodiversity, also.  Better than what?  From whose perspective?  If we train gay people to act straight, are they 'better' than they were last week?

Can anyone see the problems here?

Everything is related to a caregiver's or professional's observation of external behaviour, and how happy the caregiver is, not the child. It's irrelevant to hear the child expressing whether it's worked as a therapy or not.  The actual feelings, experiences and self-determined outcomes of the child aren't evaluated, it appears.  I'm pretty shocked, if so.

If the child learns not to show their distress, hey, the therapy's worked...?  Really?

As a professional in the field of autism, I am deeply concerned about all of this.  It appears that we are not even off the proverbial starting-blocks in the race to understand autism and trauma, with children.  We don't know what it looks like, we don't know how to treat it, and we are told by behaviourists that a quiet child means a happy child?

I do not agree.  From personal perspective of 20 years in autism work, I sense that by encouraging traumatised children to never show how they feel, then not even asking them, we are internalising the trauma and potentially setting the children up for very bad outcomes indeed.

I am not a therapist.  I would very much like the therapeutic communities to do some work on this, because clearly this is a desperate situation for autistic people of all ages.  It's not just children who experience traumatic events.  We see an increasing number of autistic adults who are being diagnosed with PTSD or cPTSD, and an increasing number of therapists desperate for some clues, some strategies.

What would my advice be, right now, as a professional who specialises in autism training, enablement of autistic lives, safeguarding, and cultural interpretation?

  • That we get excellent modern training on autism, from autistic specialists and allies. Training that acknowledges the humanity and difference of autism, rather than framing it as deficit and disorder.  The books of Dr Luke Beardon are an excellent start for this, for example. So is the work of Dr Damian Milton on double empathy.
  • That we stop seeing all 'behaviour' as defiance, or as 'autism'. Think - could this be trauma?
  • That we stop assuming that all distressed autistic people will show 'challenging' behaviours.
  • That we stop interpreting quietness as a success or as a sign of happiness.
  • That we acknowledge that repeated deprivation of sensory and other needs for autistic children may be traumatising, and that we investigate and take seriously the endless personal accounts of those needs, by autistic individuals.  It should not be routine to take everything autistic children need away from them, to 'normalise' them.  
  • That we start asking autistic children and young people about their actual experiences.  Yes, some do not use spoken language.  This is where working with autistic specialists as interpreters, and working with the individual using different communication methods, is important. Good SALT teams are allies here.  It is not enough to say, "Well it was too hard."  Our job is to communicate effectively with people, not just ask others for their opinion on them.  That's not a proper evaluation.
  • That we commission balanced, autistic-informed and led research into all of this, as a matter of priority, and look at ways to fund the resulting therapies properly and fully. 
  • And mostly, that we acknowledge the damage done to too many autistic children, and indeed adults. Whether accidentally or deliberately.  Instead of blaming autistic people for every single thing they do or say and calling it a 'deficit', we need to acknowledge the deep humanity and integrity of most autistic people, and acknowledge the potential for trauma to be at the heart of their distress responses.  

This is a topic that needs to be on every key organisation's agenda, putting together the best of the best.  We need to be working with the autistic professionals and general autistic population at every level,  finding out how to identify trauma in autistic people, how to safeguard against it, and how to improve the lives of those enduring it in ways meaningful to the person.

Autistic people deserve lives of safety, of thriving, and of caring, enabled to be their authentic autistic selves.  That is a set of societal and therapeutic outcomes we should all be seeking.

Thank you for reading.

Monday, 1 April 2019

Autism, Age, Wisdom

A photograph of a group of older people of various ethnicities, smiling

In an online poll this week, autistic people were asked whether others mistook their age.  Perhaps thinking they were older than they actually are, or younger.  The results are interesting.

A screenshot of a Twitter poll as described in the text
Out of nearly 900 votes on Twitter thus far, the big majority say they are told they look younger than they are.  I wonder if this is part of why we think autism is to do with young people?

It's a challenge, autism and ageing.  Partly because we have almost no research on autistic older people.  Thus, the general - and incorrect -  view of society is that we're best represented by children, teenagers or young adults.   Partly, the myths that we are all 'childlike' to use a phrase, based on the idea that because some have a deep focus on (say) collecting things, it must mean that we're stuck in a child-like phase of life, unable to match adult responsibilities.  Some have had their IQ measure with the wrong test, leading to the conclusion that lots have a low IQ when they they do not.  It's all been a mess.

All of this leads to some very wrong conclusions about autistic people.  That we are foolish, incompetent, 'little more than children' in the way we think.

For a start, I can safely say that after decades of working with and alongside autistic people of all kinds, I've never met a wiser group of people, in general.  I'll continue to generalise:  Instead of being focused on pleasing the majority, the autistic quest for fairness and social justice is a constant theme.  Instead of thinking everyone must show sophisticated interests suitable for some 'high society' magazine, in order to display a high social and intellectual rank, many autistic people have found joy in any number of wider interests.  Those deep interests lead some to become the world's experts in those topic, whether it's forming world-leading and important collections, deep knowledge of subjects that benefit all of humanity, or a singular joy in a favourite topic or hobby.

If we look at the UK at the moment, our young people are facing one of the worst crises of any 'first world' nation.  The NHS 2017 mental health survey for children and young people found that 1 in 8 now has a mental health difficulty.  Around 1 in 6 of the oldest of the teenagers. Figures that are rising year on year.  Many say that the pressure on them to be sophisticated, fashionable, slim, fit, academically excellent, has driven them to absolute despair.

I think we forgot to let our young people be young.
I think we forgot the value of joy in more simple things.
I think we pressure everyone to be 'normal' or better.  Academically, in terms of looks, in terms of their interests.

And I think we forgot the deep wisdom to be found, not in academic centres of learning, (some of which frankly have driven this nation to the brink of disaster at present  - think of the Eton situation and senior leaders in society getting picked mostly because they went there) but in those who are amongst the most marginalised and seem to be the most 'unsophisticated'.

We've been looking for wisdom in the wrong places.  

There is much to be gained from spending time with autistic people.  Re-learning what is also important.  Re-listening to what also matters.  Re-understanding what it is to have a different culture and communication style, a different set of priorities.

We need to research the lives of older autistic people.  More than that, though,we need realise that society needs the minds, the joys, the deep interests, of autistic people of every kind.

Thank you.

Wednesday, 27 March 2019

Autism Acceptance, not Tragedy

A rainbow coloured infinity symbol
April is a time of Autism Acceptance.

That doesn't sound too controversial, does it.  But, it is.

There's people who say to me, "How can we be positive about autism?  Why aren't you more negative about it all?  Why aren't you talking about the hardships that some individuals and some families go through?  Why aren't you discussing those in greatest need of support, who cannot live independent lives or be in paid employment? Where's the tragedy stuff, Ann?"

I'm glad to explain.  It's simple.

We have now had more than 70 years of portraying autistic lives as tragic.

The end result has been more tragedy.

This isn't a surprise.  Suppose we were endlessly negative about (say) women, saying, "Some women live awful lives.  We mustn't say good things about being female, because that's disrespecting the women who really struggle."  Would this be a good thing?  Would it help any of the women who were indeed struggling, if everyone was trained to see women as a tragedy?

The tragedy-narrative hasn't led to better results.  It hasn't led to better services.  It hasn't led to better care.  It hasn't led to better benefits, or better education.

It led to some schools not wanting autistic children there.  It led to some leisure services deciding that autistic people were too much hard work.  It led to too many employers deciding that autistic people were too costly, too problematic.  And it led to some groups earning themselves a breathtaking fortune from providing abusive 'services' to these tragic autistic people.

Exceptions apply.  Of course there are some good services out there.  But generally, the 'awareness' became 'bewareness'.  Beware!  Autism!  Run!

So, that's the reality of forcing an entire population of autistic people to live, endlessly, as figures of tragedy for the media.  Or objects of pity.  Or objects of charity.

This is why the Autistic Pride networks exist now.  They're led and run by autistic people, and their aim is to boost self esteem.  To celebrate autism and whatever makes that person happy.  To showcase autistic arts, etc.  To enable access to things that are genuinely fabulous.  And to share life, friendship and fellowship with other autistic people of every kind.  Whether verbal or not.  Whether of high, low or medium IQ.  No matter what support needs they may have.

Is it perfect?  Of course not.  But it's like emerging from under an endless burden of negativity, into a shaft of sunlight.  And that acceptance, that friendship, that sharing - well, it enables families to relax, to enjoy, to start to thrive.  It enables schools to think, "Hey, what have we been missing here?".  It enables employers to get involved and see us as the fabulous, varied people we are.   And...it enables people to find some answers for themselves, find new ways round obstacles together.  Whatever their desires for their own lives.

Is every autistic person fantastic all the time?  Nope.  We're all individuals, so some of course are grumpy or sad or any other emotion. Some are in terrible pain or fear, because teams inflict pain and fear upon them, quite accidentally, through ignorance.  Some have awful things done to them that are quite enough to make anyone angry, avoidant or afraid.  Some have multiple disabilities or difficulties, and they are rightly looking for good answers.  So finding those good answers is important.  For them, and for their families.

In the wider work I do, I help ensure that care homes are run safely and well, listening to autistic people who live there.  I help families to find positive ways to help their young people to thrive, and direct them to autism-respecting services that enable skills and autonomy without abusive and controlling methods being used. I train teams to understand and respect autistic people, changing their own attitudes to us.   I do all of this with amazing teams of people, many autistic.  Including our own wonderful Autistic Pride Reading charity team, and the amazing experts in AT-Autism.

Our aim is to ensure that every single autistic person is able to live a life that brings enough joy.  Enough focus.  Enough thriving.

As a parent, I've had a long journey through the perils of schooling that went awry, and a fight for basic services.  I'm not living in some fantasy where all is filled with glitter.  

But, the tragedy narrative has caused too may dead autistic people. Too many have fallen into such depression, such anxiety, that taking their own lives is preferable to living another day of fearmongering and loneliness from all that 'othering'.

So, yes, I won't be talking about autism as a tragedy, because we're not tragedies.  We're a group of truly fantastic people.  Once we embrace a deep understanding of autism, and accept, include and enable each other, all of us benefit.

If you are looking to do something positive, donate to an autistic-owned enterprise.  Come along to our public days.  Buy goods and services from autistic people.  Make sure you're not 'lighting it up blue' (a campaign started by a very problematic foreign organisation which doesn't like autistic people at all).  Use symbols like the one at the top of this page, showing autism acceptance.  Red and gold versions exist too.

So, autism acceptance, in April.  We're reclaiming it and making it our own.  

Get to know more about us, and enjoy.

Wednesday, 20 March 2019

Autism: The Perils of Some Online Training

A man with dark hair, in a business suit, looking at a laptop computer, in a shocked way.  There are three exclamation marks.

Not much time?  A problem to trek to a distant training course?  It becomes tempting to look for online training.

Training on autism is certainly available online.  I've seen, and taken, a few such courses.  

Some are reasonable.
Some, frankly, are very worrying.

So, I wanted to share a few important thoughts, for those making decisions about how their staff are trained.  And, of course, to people considering taking online training.

One important thing about autism training is removing prejudice.  Prejudice exists.  It not only exists, but is a major barrier for autistic people.  It leads to terrible outcomes for some.

There has been a very recent study looking at prejudice against autistic people.  It showed that the best way to stop it is for non-autistic people to spend time with autistic people. To get to share life with us for a while, to meet us as friends, neighbours, colleagues, parents, students, volunteers, artists, craftspeople, musicians, etc.  To get to see a few of us, in all our variety, and of course to learn good, accurate information.

Online training courses don't allow for that personal interaction.  People never get to meet us.  So, there is a concern about whether such courses can do much for overcoming prejudice.  That research showed that, for some, just knowing people are autistic makes the prejudice worse, not better.  It needs a trainer's skill to overcome some of that.

Worse still, some online courses show every stereotype imaginable.  Endless photos of a youngish white male, dressed in clothing that looks like it has come from a charity shop, perhaps sitting aimlessly on a bench somewhere.  Or being 'looked after' by some smiling perfect professional.  It's depressing and inaccurate stuff.  Most of us are not male, for a start.  I'm quite serious about this.  If we start looking properly for all the autistic people who do not identify as male, it adds up to more than half the autistic population.  Surprisingly few of us are in care home settings.  Quite a number are business professionals, as likely to be dressed in a corporate suit, or other workwear, as a tracksuit.

Some online training also tends to be filled with myths.  Myths about '1 in 100' being autistic, when that's a figure from decades ago.  Myths about lack of empathy, myths about lack of awareness of others, myths about our communication and culture. Myths about dangerous behaviour, when most of us are safer than other people to be around.

There's another problem with some of the online training.  We don't know who's taking the course.  Unless they are sitting in the room with the 'examiner', it could be absolutely anyone who fills in the answers.  As a HR person or manager, you've no idea if Employee X did indeed get 95% on the assessment, or whether they asked a mate to do it for them.  You also do not know if they simply screen-shotted all the answers and then wrote them out in the assessment bit, without taking in a single bit of knowledge.

But now, they have a Certificate that says they know about autism.  Out into the world they go, looking for these shabbily-dressed young men sitting on park benches  - and perhaps making a right old mess of every encounter thereafter.  It forces autistic people in your organisation to hide, because those stereotypes are simply humiliating for them and in no way represent their own reality.

If you are searching for quality autism training that matches your corporation's ethics and anti-slavery policies, here is your checklist:
  1. Autistic people are involved at every level in the training organisation, as equals with non-autistic people.
  2. Autistic people designed or co-designed this training.
  3. Autistic people lead or co-lead the training, and are paid properly for it, not a book token or for 'work experience'.  Unless of course that was their own personal choice to work for a token amount, or as a volunteer.  Watch out for breaching your anti-modern-slavery policies if you're using companies that coerce autistic people into working for free, when money is paid to others.  It's an embarrassing question to ask, but it's vital to ask it. No good training company should mind affirming that they are responsible about this, and maybe letting you communicate with their autistic trainers about how valued they are.
  4. The materials use respectful language about autistic people.  
  5. It does not use puzzle-piece logos or promote the work of highly problematic groups that wish to see autism 'cured'. (A similar aim to wanting all gay people cured...yikes, no).
  6. It gives trainees an accurate and respectful idea about autistic culture and communication, sensory needs, and the value of passionate interests.
  7. It shows how autistic people can thrive, and how to enable us to do our best.
  8. It has a wide variety of autistic people represented or described, e.g. of different ages, cultures, ethnicities, social groups, genders.
  9. It respects the many ways in which autistic people contribute to society, whether as friends, volunteers, writers, supporters-of-others-online, workers, professionals or otherwise.  But also stressing that all are valued parts of society, all needing lives that are worthwhile, safe and respected, whether in paid employment or not.
  10. It focuses on changing the attitudes and misunderstandings of other people, not changing the autistic people to be copies of non-autistic people.  In particular, it avoids problematic 'behaviour-training' such as ABA to enforce such normalisation. 

And... it enables the trainees to feel relaxed and cheered about meeting autistic people, keen to encounter us and learn more from this fantastic and diverse group.

If you are confident that the training ticks those boxes, use it.

I'm open about recommending my own groups and the groups where family members are trainers.  Plenty of other good ones out there, of course.  And there's work enough for all, respecting one another's contributions.  Here are two starting points.

AT-Autism, offering national and international training (CPD, world experts)   Specialises in training organisations to have a deep understanding of autism, and improve their in-house training.

https://www.aprtraining.org.uk/ Highly respected professionals and leaders, autism-positive charity  Working in the central South of England, encouraging the best of cheerful and practical advice for autistic people and all who share our lives.

Thank you for reading.