Monday, 19 August 2019
The painting is by George Frederic Watts, and is called Hope. It shows a lone blindfolded figure sitting down and holding a lyre harp, their head close to its remaining string.
For me, it says something about the desperation for communication, joy and freedom which is felt by some autistic people trapped in some care home settings that don't understand autism.
It's a regular thing that a care home worker or behavioural enthusiast will pop up to say to people like me, "You don't know anything about Real Autism. We do. We work with Real Autistic People in care homes and they can't communicate at all. They spend their day screaming and self-injuring. That's Real Autism."
Oh goodness, no, it's not Real Autism.
That's distress behaviour. Not autism.
We need to be clear about our duty as human beings to do our best for one another. To enable safety, trust, affirmation, and most of all, communication.
I spend a fair bit of time in care home settings, co-assessing care alongside other professionals. I've worked alongside and with hundred upon hundred of autistic people of all kinds. Those able to use spoken words, and those not able to, and all those in between who, like me, are sometimes able to. Those who have been given additional diagnoses of learning difficulties. People of all kinds. Much appreciated. For me, an absolute joy to spend time with, and to listen to. I'm autistic. I have an autistic son. I'm post-grad qualified on the topic. I train NHS teams, amongst others.
Communication isn't always about words, especially when you spend the first ten years of life not having a clue what spoken words meant. That was me.
In our family, we communicate mostly in autistic language, not non-autistic language. It's a different system. The work recently by Crompton et.al. showed how effectively autistic people can communicate and collaborate with one another, and how easy it was for miscommunication when partnered with non-autistic people. We really do have our own language and culture, when enabled.
So, what of the alleged 'real' autistic person, screaming in distress and self-harming?
We need to be able to decode this, and resolve it, because this is distress behaviour, not autism. And it is communication, loud and clear.
Suppose they are hitting their head?:
Could they have migraines?
Is it tooth pain?
Eye pain from undiagnosed glaucoma or similar?
Supposing they have collapsed on the floor, or are using their body in 'wild distressed ways'?
Could they have undiagnosed hypermobility syndromes such as Ehlers Danlos, which is a common (but little thought-about) co-occurring thing? That can cause pain, balance difficulties, difficulty standing. POTS is another possibility, where there's an error in how the body gets enough of the right blood round itself when someone stands.
What of Restless Leg Syndrome, (which can affect any limb) and can lead to a desperation to move or kick out to get rid of the pain and discomfort in the limb?
Could they have injuries of any other kind?
Are they ill
Do they have CFS or similar?
If they seem frustrated, could they be bored to tears, having been given the wrong IQ rating because teams were using the wrong IQ test for autistic people for decades. Many have a normal or higher IQ, but are given simplistic tasks, teams believing they can do no better.
If they are experiencing meltdowns regularly, have they had a checkup from a brain team? The recent research showing many meltdowns are linked to epileptiform activity in the brain is interesting, and of course vital to understand. Not 'autism', but potentially a form of epilepsy? More research is happening.
What of communication? Have teams engaged a really good Speech and Language Therapist who specialises in autistic communication, to work with the person on ways they can communicate best? Whether movement, sign, technology, speech or otherwise?
What of the sensory environment? Starting with their own body and the clothes and shoes on it. Are they too tight, too loose, with seams or labels that scratch and dig in, causing immeasurable pain and discomfort?
What of the rooms they encounter? Are they lit with lighting that is so bright or flickery to their eyesight that they cannot see in the space, and are totally disorientated?
What of the soundscape? Get a decibel meter (easy to get apps for a smartphone, for this) and see what areas have sounds above about 25 decibels. That can be deafening. You'll find it is just about everywhere in most care homes. The quieter ones often have people thriving.
Sleep. Or rather the lack of it. Common for autistic people because of all sorts of factors, including uncomfortable scratchy nightwear, sheets that feel like sandpaper, beds that creak like a ship at sea when they move. Noises from the hallways and adjoining rooms. Endless flickering light in bathrooms nearby etc. Sleep disorders to do with melatonin or similar. Anyone who is regularly without sleep will be irritable.
Fear. So many autistic people are living with undiagnosed trauma conditions because of past maltreatment, especially those who communicate differently and cannot easily say what happened to them. Are they in fact terrified of someone they work with right now? We don't need to go far to read of the horror stories of a few care homes and the cultures people endured in there of mockery, scorn, violence and worse.
Coercion. Are they subjected to inhumane coercion methods from some fairly fanatical behaviourists? (ABA, or those ABA fans who claim it's PBS but it's actually pure ABA). I say plenty about professional concerns on this subject in other blogs of mine. I see people left in a terrible mental state by some behaviourists. Being clear that some are kind people who adapt techniques to be collaborative and joyful, and I don't mean them.
There are simply so many possible reasons for distress behaviour.
We do no favours to people in care home settings by claiming their distress is 'autism'. It leaves people at grave risk of poor outcomes from undiagnosed health situations, for a start.
We need to be proactive. We need to get in autistic specialists, who work alongside other professionals such as Occupational Therapists and Speech & Language Therapists, and help decode what's happening. Translators, allies, able to see and sense the sensory difficulties that teams would otherwise be guessing at.
We need to stop the idea that distress is 'real autism'. We need to stop the idea that autistic people don't and can't communicate. Above, just ideas. Not a full list. But I hope it's given you a starting point.
Every autistic person is a person of worth, a person who deserves to be listened to, and respected for who they are.
Working together, we can bring about good outcomes.
Glad indeed of the work I do with teams across the country who want to effect positive change that is fit for autistic people, and fit for the 21st Century.
Thank you for reading.
Saturday, 20 July 2019
Above, a photo showing a collection of glass marbles. I used to collect them, as a child. I'd study them for hours, watching the way the light reflected off them...through them. Feeling their cold smoothness. Admiring their colours and arranging them so that they created a beautiful pattern.
Other deep fascinations I had were around horses, maps, grasses. Toy cars featured, and yes, I did indeed line them up, and spin the wheels on them.
I didn't talk. I could make word sounds, copying word sounds I heard from others, but it wasn't how I communicated. I communicated through pattern, colour, rhythm, body movement. I thought in pictures, 'videos', not words.
I'm now MD of a successful national Professional Practice that has run for 20 years, dealing with many of the top Blue Chip companies in the UK.
So, how did I get from collecting marbles....to running a company? What magic therapy, what intensive interaction, what amazing therapist did this?
None at all.
Like hundreds of thousands of autistic people before me, and the same after me, we just learned.
Some learned the tough way, with violence if we did something 'wrong'. I wouldn't recommend that. At all.
So...ABA. Applied Behaviour Analysis. I write about it from time to time, as more and more concerns arise from research.
Here are a sample few papers that may be of value to you, in your quest to think deeply about autism and what's needed. Deeply in what we know about autism in 2019, not what we knew in 1940, to be clear.
That is quite a piece of writing. It's an opinion piece, not fresh research, but the links within it will lead to a whole world of concerns about ABA.
If we want to continue with doing our best for autistic children, what about this
An interesting paper showing that in music therapy, it was in fact the quality of the relationship with the tutor that made a difference, not the therapy.
What about this one?
This paper noted that repetitive movement seemed, if anything, to help autistic concentration, not get in the way of it.
And this one?
It shows that it didn't seem to matter which therapy autistic children had, or for how long/how many hours. They still developed skills. So, that hectic dash to get them into the best 'therapy', for the most possible hours, at the earliest age? Might as well just sit back and read a newspaper, whilst a good Speech and Language person and a good Occupational Therapist sort out a best way for the fabulous young person to communicate, and the best way for them to do basic skills in a world that is too overwhelming for most of us.
What sort of overwhelming? Chris explains Roundabout Theory here: http://annsautism.blogspot.com/2018/07/roundabout-hypothesis-guest-blog-by.html
...and you can watch this fabulous short clip. https://vimeo.com/52193530 2 mins. Turn sound on, really really loud. That sort of overwhelming.
ABA is problematic, in my view. Here's a video of some. Watch the first minute. See how often the child is grabbed, moved, grabbed, moved, grabbed, moved. How the toy is given, the snatched away. Endless endless repetitive meaningless tasks. That's not OK, from my perspective. I wouldn't recommend it. https://www.youtube.com/watch?v=7pN6ydLE4EQ&t=504s
Autistic 'behaviour' doesn't have one neat cause, most of the time.
It may have many causes. Some historic, from memories or emotions of past situations. Some trauma-based, from poor treatment. Some around sensory need that isn't easy to spot. Some around communication, using autistic language, not non-autistic language. Yes, that's a real thing. The cause may be health related, or a spiritual or artistic need. It may in fact relate to entirely different things. Personality, ADHD, Ehlers Danlos Syndromes Restless Leg Syndrome, for example.
It may be many of those things, all at once. Including the trauma, which of course would need a very specialist and thoughtful approach from a very very qualified person.
But here's the terrifying bit.
Who would have guessed that an 18 yr old without a qualification of any kind can turn up at your door as a 'tutor', having probably never even knowingly seen a young autistic person before....and you would pay them to do a therapy on your beloved child.
Yes, some ABA specialists are qualified in child development as well, and I'm not talking about the ones who hold an additional appropriate qualification for applying therapies to children who are vulnerable and may have complex, overlapping and overshadowing diagnoses and situations. I'm talking about the average ABA interventionist at a parent's door.
This isn't a 'gold standard', is it.
This is playing with children's brains, without any actual RCT evidence to prove a thing. (RCT evidence is a proper big study, with children given a therapy...and other children not given the therapy...and really good long term studies of who did best, what harms, etc).
My concerns about ABA are shared by simply vast numbers. Here's just one example of many many surveys.
That's from https://autisticnotweird.com/2018survey/
So, what helps?
Changing the attitude of the people around us.
The people around us learning about autism.
The people around us enabling us to see, hear and thrive, with simple accommodations.
The people around us respecting our different communication methods, and learning about them, and enabling us to learn about theirs. Both enjoying that learning. Both enjoying sharing. Double empathy.
Allowing a child to grow in their own time, whilst of course keeping them safe. Always take top advice on safety concerns.
Accessing good autistic experts to interpret your child's behaviour and help with sensory accommodations.
Accessing good speech and language experts, and occupational therapists who are trained in autism and sensory needs.
Trusting your instincts on which schools care about your child, if a choice is available to you.
Enjoying one another's company, as companions in life's journey. Watching the young person grow, and thrive, and share, in that caring and supportive environment.
Learning from autistic people online. So many blog, and give of their time freely on social media. But respect their boundaries, and their way of communicating. Ours is direct, honest, straight to the point, not 'rude'.
Twitter, with its #AskingAutistics hashtags can be useful. Or following threads like those I and others put on there to help parents with all sorts of autistic children. An example:
You might want to consider the SPELL training that's available from good providers.
You might want to get your school or organisation to use Synergy training from AT-Autism
You might just want to do your own thing. Many do. I know their autistic children. They're wonderful.
It's about love, you see. It's about love, and thriving, and sharing. And respecting difference.
Goodness me, we need families to have good support. No-one is doubting that at all. And we need young people's needs to be respected and good supports put in place for them, based on their needs, not on someone's probably faulty understanding of 'behaviours'.
But, without deep understanding and caring, there won't be thriving. There can't be. Nothing thrives in a forced repetitive intervention, pulled about and denied basics until there's total compliance.
Whatever you choose, I wish you and your fabulous young people a life of joy.
Friday, 5 July 2019
There is much debate about cure, amongst autistic people, families and society. Some of it useful. Some of it generating a lot of anxiety or anger.
Some imagine there are only two possible groups. Those who don't want any autistic person given support, or medical assistance for anything medical...and those who want all autistic people medically or behaviourally normalised, and future autistic people prevented.
It's a far, far more 'multi-flavoured' discussion than that. Much like the picture of the different spices, shown at the top of this blog, there are different aspects of being autistic. Different things to consider. Different personalities. Different circumstances. Different levels of possible support.
As a professional in this field, and an autistic person with an autistic family, friends and colleagues of all kinds, I want each person to be free to make their own best choice.
What I don't want is lies, profiteering, or damage to autistic people. Those are the three things I am deeply concerned about, and three things I see far too much of from some places.
Most of the difficulties autistic people have are from some non-autistic people. That's a tough fact, but a fact it is, and we can't make it go away by ignoring it.
It's mostly some (not all) non-autistic people who control power in society, and budgets, and make decisions on whether autistic people get support. Whether we have buildings with lighting and soundscapes that mean we can access them. Whether employment has barriers so difficult that few autistic people can overcome them. Whether prejudice is allowed to build to such a level that autistic people are wrongly feared, hated, attacked, defrauded, bullied, ostracised. Look at the anti-vaxx groups as an example. They would rather their child died than have a child who is autistic. That is how bad the prejudice is now. We also see too much nonsense written about autistic people and published to earn a company some profits.
I'm very glad of allies. Allies who enable us, and look out for us. Allies who realise the myths about autism are exactly that; myths. That we are indeed generally honest, kind, fair, diligent people, gravely misunderstood for nearly 80 years. Here's my blog on some of the research. https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.
When we say we want autism cured, what do we mean?
I'm going to generalise. Every autistic person is different.
Autism is a different social communication system, which means we collaborate and socialise differently, often enjoying the company of other autistic people, but surrounded by non-autistic people who misinterpret us and get offended, thinking they're seeing rudeness.
Autism is a different sensory protocol, designed to spot danger around us and others, hence very sensitive hearing and sensitivity to anything different in the scene. Arguably we are, and always were, the 'early warning system' for communities. Focusing on the surroundings, not on the non-autistic social scene. That may have kept society safer for thousands of years.
Autism is a different focus, where we practise, and practise, and practise, until we master something. Build something. Create something. Something of value for all. That may have helped society build structures and systems that were fair, properly tested, good for all.
Not all autistic people have such skills. Every autistic person is a person of worth, a person who deserves to be fully themselves, and living their own best life.
Some autistic people (not all) find they are in too much sensory pain, and are desperate for that pain to be switched off or down. I fully support their quest for that to happen, if adaptations aren't helping.
Some autistic people (not all) find they are in great difficulties with planning and carrying out tasks, because their internal 'organiser' is amazingly disorganised, and they very much hope that they could improve this. I fully support that.
Some autistic people (not all) cannot use spoken language at all, or perhaps reliably, and very much wish to (although that's not autism itself, as quite a few autistic people can speak just fine. So it's a 'comorbid' (hate that word...). They might want to use spoken language better, and if they do, I fully support their quest. Although for me it is a pain in the, er, language department and I'd be happier just typing, personally. I blogged on that too.
Some autistic people also have a very low IQ and wish theirs was higher. A low IQ is not autism. It's another 'comorbid'. But if they wish to have a higher IQ, and there was a way to do that, I'd support it.
But...what does 'curing autism' mean?
Can we just 'cure' (say) sensory pain and planning difficulties, but leave the useful parts (as defined by that person?). Perhaps. No idea.
What happens if we try?
What if the 'cure' goes wrong? What if tinkering about with genetics and potions actually leads to disasters, to things becoming worse, not better? We barely know how to give an autistic person a standard medical treatment without noting it has a vastly different effect on us, compared to others. Tinkering about with genetics? That's serious stuff. Messing about with medication, in the hope it only 'removes' a problem and not something vital? That's impossible to say. It's why messing about with the genetics of people is so carefully controlled by international groups. Almost no drugs are tested on autistic people.
I also worry greatly about a future where our plans for helping autistic people are built on lies.
Lies that 'all' autistic people are tragic burdens that cost £millions. That one really is a breathtaking piece of nonsense.
Lies that 'all' autistic people suffer.
Lies that 'all' autistic people wreck the lives of others.
Lies that 'all' autistic people lack emotion, empathy, humanity.
I see those lies Every Single Day of my professional life, from some groups and from some specialists.
Lies that we are behaviours that need controlling
Lies that without treatment X, we are incapable of learning anything, ever.
If we spent even a thousandth of the quest-for-cure monies on actually improving autistic lives, actually providing autistic-led, autistic-requested support, actually countering the lie-mongering...I wonder how much better life would be for families? For individuals? For society, able again to benefit from autistic people instead of using us as scapegoats?
There are countless £millions being spent on a quest for a cure, and the background papers aren't about improving our lives. At all. I've read some of them and it's shocking stuff. The background papers are about improving the profits in the bank for the shareholders, and we are the tool by which they're going to do that.
That, my friends, is what worries me.
And, it should worry you too.
Because a population that is portrayed as nothing but tragedy, nothing but burden, nothing but cost and misery...well that is a perfect target for profiteers.
Don't you think enough non-autistic people have profited from us already?
I'd like to see a world where we honour, respect and enable autistic people.
Where we truly listen.
Where we are free to identify all who are autistic, and stop imagining that autism looks like a multiply-disabled non-speaking young white boy or a white male computer engineer in his 20s.
Where we affirm the importance of positivity and support, instead of imagining that such things 'fail to affirm the problems of others'. (Nonsense. It's perfectly possible to affirm good things, as well as support those who need support,and offer medical treatment to those who have medical conditions such as IBS, EDS, epilepsy)
Where we encourage specialisation, and put in place good housing,doable jobs and vocations.
Where we acknowledge the autistic people who are in employment, who are retired, who look after family, who bring up children, who serve charities, who support one another. The weird stuff where we are either in full time work, or are 'tragic burdens' is another myth, isn't it.
Where we stop seeing full-time-work as the only measure of human worth.
Where we take time to walk in friendship, learning autistic culture and communication. Observing caring, love, sharing. Creativity, art, poetry, music, flow, rhythm.
Realising that autistic people aren't naturally rude at all. It is a misunderstanding.
Celebrating with the Autistic Pride movement and all it is bringing to confidence and authenticity.
And where those who need support or treatment that actually does help with pain, fear, depression and anything else negative, can find that in safety, with their lives and wishes at the centre of that quest.
Like so many of my fellow professionals, I have serious concerns about the cure-industry that is happening.
I think autistic people are a vital part of society. As vital as every other person. Bringing different perspectives, different integrities, different skills.
I think if we forget that, there will be a catastrophic cost to us all, in a world where we need every kind of mind to help us all survive.
Friday, 21 June 2019
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. Whose trust is broken. Whose bodies maybe likewise.
What of those forced to live in those dark spaces?
I don't 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.
It can seem like a brilliant but false safeguarding idea, just not talking to autistic people. "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. 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.
And, such an 'alleyway' of dark aloneness is a dangerous place indeed.
Those who inhabit such spaces, the spaces of the unseen, unacknowledged person, well, often they are the worst of the predators. Watching and waiting to see who is left untended by that group, unloved, afraid. Moving in with their pack of lies and false promises, gaining the desperate trust of that person. Preying on their vulnerability and their desperation for contact of some kind. Perhaps their vulnerability in believing what they're told. In hoping that the person really means their apparent moment of kindness.
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 the IICSA reports and all they reveal about the vulnerability of some of the victims, the tactics used.
Do we choose to learn from any of that? That's a deep question. A question that can never be answered with a suggestion of shunning, of pretending the vulnerable do not exist and cannot be seen.
I leave us with that thought.
Tuesday, 11 June 2019
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
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
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. https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html
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
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
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.
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.
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.