Friday, 21 June 2019

The churches, safeguarding, autism, and the dark spaces

The photograph shows a shadow of a person, against a dim alleyway.  We've all walked in such a space, I expect, in the dim of evening or the dark of night, hearing our footsteps, and listening out for any sign of danger.  Just us, and whatever may lay ahead...or behind us.

"Don't go there alone!", we might have been warned.

Whilst most journeys end well, we are all familiar with the news reports of those that didn't.  We grieve for those whose lives are ended, or shattered. 

What of those forced to live in dark spaces?

I don't just mean physically, though, in this piece of writing.  I mean living in the dark spaces where people pretend we don't exist.  Where people pretend they cannot see us.  Where people pretend they cannot hear us.  Where even in a crowded space, we can walk alone, unacknowledged.  Shunned, Ostracised.  Perhaps others encouraged to fear us for no good reason.

It can seem like a brilliant but false safeguarding idea, just not talking to autistic people, for example.  "Hey, nothing can go wrong if we Just Don't Talk To Them!".  "We won't get into trouble, as we haven't said anything."

But, is that true?

There's good research around how damaging it is for people to be ostracised, socially, or prevented from being with a community of love and support.  That awful feeling that they are shunned from those around them, cut out of support, affirmation, love, friendship, fellowship.

In a very real sense, people can die of loneliness.
That any such thing can happen in a place of God makes it so much worse.

And, such an 'alleyway' of dark aloneness may be a dangerous place indeed.

Those who inhabit such spaces, the spaces of the unseen, unacknowledged person, well, often they are predators.  Watching and waiting to see who is left untended by that group, unloved, afraid, untrusted.  Moving in with a pack of lies and false promises, gaining the desperate trust of that person.  Preying on their vulnerability and their need for contact of some kind.  Perhaps their vulnerability in believing what they're told. 

In particular, predators learn to scapegoat those who might give evidence against them. It doesn't take much to turn a group of people against anyone who is deemed a threat, after all.  Whether a drip-drip of negativity about a marginalised person, or an active campaign, a leader can soon convince others that anyone different is toxic.

Leaving people in the dark, in that loneliness, is a dangerous thing.  It is the exact opposite of good safeguarding, I would say.

We look at safeguarding reports and all they reveal about the vulnerability of some of the victims, the tactics used.  The knowledge that many of those targeted were indeed disabled.  From the IICSA report, about half, in fact. 

Do we choose to be Christ to others?

To offer a hand of friendship?

To show what it means to be a person, a place, where trust can be forged?

Our churches and faith communities are meant to be safe havens, where all can be with God and with one another, in fellowship and friendship.  Let nothing stand in the way of that aim.

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. 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  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.  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 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.