Monday, 31 December 2018
Most autistic children in schools are bullied at some stage. We know this from research.
We also know that too many of the bullies get away with it, for month after month, and year after year.
We know that many autistic children sink into depression and anxiety, become school-refusers, start to fail in their targets, and some go on to self-harm or to consider taking their own lives. Some die. It's a very serious subject, and every school needs to be very serious about understanding, investigating and handling bullying situations with thoughtfulness, care and compassion.
Many school staff are of course professional, caring and compassionate. I want to be clear about this, because it can be too easy for it to feel like people don't understand the pressures of teaching. The relentless targets, the endless workload, the limited budgets, the fight to get support for a child when there are a lot of children to fight for. Many of my friends and colleagues are teachers, and I was involved directly in school Governance for many years, in a tough area with 400 fantastic young people, and later in a specialist autism school. Working as a professional now in the field of autism, my own autistic past and present have taught me a huge amount. I'm very grateful indeed for the many fellow professionals I encounter, and all they bring to the teaching professions.
First, we need to understand that autistic children are generally very honest, and very accurate. Few invent stories to get another child into difficulty, and few invent things that have not happened. So, our first step is to presume competence and say that we will take what they say seriously and investigate it properly.
Second, we need to understand that autism is largely a sensory processing difference. Many autistic children process pain very differently, for example. Some can be put into intense pain by a simple repeat flashing of a light into their eyes, or driven to shutdown by someone deliberately clicking and flicking stuff near them time and time again, knowing they cannot cope. Some will double up with pain from being jostled in a corridor, by bullies who know how to jostle in a, "I was just trying to get past, Miss, honest", way. Every. Single. Time. Some will not know they are in intense pain, from really serious injury, because the pain processors don't connect properly. Our own son played rugby for several weeks with a broken foot, and the GP & physiotherapist had no idea it was broken. They asked him if it hurt. It did not. That was a meaningless question to him. If only they had ordered an X Ray....
And there we have our main problem with a good investigation. We ask the wrong questions, quite unknowingly. We assume that the autistic child will appear to be in pain, and will respond with the right pain-responses.
Autistic brains deliver information differently. They gather it differently, too. You might want to look at the post on Roundabout Theory by our son, now a well respected trainer and conference speaker. http://annsautism.blogspot.com/2018/07/roundabout-hypothesis-guest-blog-by.html for how fast autistic brains can reach 'overload', and the importance of having space to let the brain's 'traffic' clear and start flowing again.
There's four basic types of memories, as we know. But for others reading, easy summary -
Remembering how to do something (procedural memory).
Remembering facts about a subject or individual (semantic memory)
Remembering sensory details about something, appearance, sound etc (perceptual memory)
Remembering a timeline of what happened when (episodic memory).
That last one is the one many autistic young people struggle with. Some autistic people have an amazing recall of what-happened-when, so we can't generalise too much.
How does that episodic memory difficulty work? An example:
"We went to the cinema a few days ago and saw something. What was it?" <thinking> <still thinking> <ha, a fact has arrived - 7.3 IMDB rating...wait now, what was that linked to...following the memory trail back...thinking, still thinking, ...some parts good, other parts bad...nearly there....still thinking....ha! Aquaman! I've found the file! And wallop, there's the data for the whole film and what happened. It wasn't filed by time and date.
It's all in there. But often in a 'sealed compartment' with no link to the timeline from today.
If a child is very traumatised, that box may be completely unopenable by them. A number of autistic young people are living with PTSD or cPTSD from incidents or series of bullying attacks. That, of course, is very specialised territory to unravel and needs the help and support of trained PTSD professionals.
So, what happens when a teacher investigating a bullying incident last Thursday asks, "What happened to you last Thursday, Sam?"
Sam may not have a clue. Last Thursday needs putting in context. Sam may well respond with answers that seem truly unhelpful, "I don't know". Or "I had cheesy chips for tea", or "I went to school." Those are, of course, accurate answers to the question. We need to be specific. And build on the information, carefully and slowly, with the right support for what that particular child needs.
Supposing a teacher asks, "Did it hurt?" And Sam responds with, "No". Often, that's the point where the confused teacher says, "Well it can't have been that bad then."
Think about our son, above, playing rugby with a broken foot for weeks. It didn't hurt. But it was the wrong question. So, what question should we ask? We may need to consult a school nurse or other trusted healthcare professional, in line with school policies and consents, to investigate for injuries. Look and test, rather than assume the answer "It doesn't hurt" means "It's really minor". If there's bruising, suspect it could be serious. Although some autistic children are naturally uncoordinated and may well injure themselves accidentally. Generally the bruise and injury patterns are different for that, though. Check your safeguarding policies and follow those.
Supposing a teacher asks, "Did you ask them to stop?"
Many autistic children will go straight into shutdown in a social emergency. Their ability to speak or move becomes nil. They could no more speak than fly. Others will go into a meltdown event, which is not a temper tantrum, but may involve what looks like angry retaliation. It's more like a epileptic 'zone out', and out of their control.
Either shutdown or meltdown are hugely unpleasant for them to experience, often with no memory at all of it happening, and much exhaustion and bewilderment afterwards. It is not an attempt to attack someone.
Supposing a teacher asks, "Are you friends with (the bully)?" and Sam says yes? It could be that Sam has no idea that she is being bullied. It could be that the bully has claimed to be a friend, and Sam truly thinks this is what friends do. It could be that Sam is so lonely and desperate for human company that she is willing to put up with a bully, because at least the bully will talk to her sometimes. Yes, some of our wonderful autistic children are that desperate for human contact. In one piece of research, teachers spotted far more incidents of bullying than the autistic children did.
Bullies may learn that they can hit an autistic child hard and they don't say anything, and apparently don't feel pain. Bullies might discover an autistic child who can be put into intense pain with things that are really easy to disguise from the teacher. Bullies soon learn that the world often wants to see autistic people as 'nasty', as 'troublemakers' . It is easy for bullies to relish in telling others that the autistic child is the problem, the autistic child is the bully really....
We can be aware.
We can give the autistic child time to process what happened.
We can allow them to use written answers, drawings, maybe model figures to describe what happened.
We can get in an autism specialist to help decode what happened, and work alongside the team.
What one cannot ever do, as professionals, is say, "I don't believe you.", or "You're just imagining it." Or "It was really minor, just get over it." It wasn't minor to them. It was painful, and scary, and humiliating.
It can be deceptive, just looking for 'the right' responses from an autistic child. They may smile when in pain. They may laugh when terrified. Their responses may be delayed, or seem inappropriate. Those do not mean an absence of danger. Check. Check again. Check with the family. Check whether the child is also being targeted on social media. Targeted on the school bus. Targeted to and from school.
Meantime, keep a safe and respectful watch over things. Find ways to separate them from people who are causing them difficulties, if you can. Move the troublemaker rather than disrupt the routine and safe-spaces of the autistic child. Is there a safe space the child can access for break times, with an enjoyable hobby, if they'd prefer that? A different area of field they can run round, if they need activity? Is there a 'safe person' scheme at breaks, an individual that children can go to be with who can be a second set of eyes and ears for them? A 'friends bench' where a child can go if they are feeling alone or unsafe, where friends and safe appointed people can come over and sit in companionship with them?
I'm a little wary of the befriending schemes used by some schools where children are effectively bribed to be with the autistic child. Often that doesn't end well, and the autistic child get the impression that people will only be with them if they pay them to be. That's not a good life lesson for any child. So choices of companion need to be thoughtful ones, with a child or young person who truly wants to be a friend to people.
Has the whole school been given talks about being a safe and respectful place, and about what to do if we think a person is in difficulties with bullies? There are excellent training groups who can do this. If it's a whole school, or a whole class, we don't need to reveal who is autistic, or who might be in trouble.
The autistic children in our classes are fantastic young people, but often in fairly unbearable levels of fear and pain. Often blinded and deafened in the glaring lighting and soundscapes of modern classrooms, and dreading the next beating, the next ostracism, the next shutdown. The next person to tell them it was really minor.
We can do something about that, together. Because they deserve better.
Saturday, 22 December 2018
|Tree with red heart ornaments hanging on the branches. It is winter. There is a church tower in the background, against a blue sky.|
I read a lot of 'how to survive Christmas with an autistic child' stuff. As if that is all there is - a distressed autistic child, allegedly not caring about anyone else. The majority of autistic people are not children. And we not only survive, but thrive, if allowed to. Most autistic people are very thoughtful about others, but have a different culture and communication style. It can lead to misunderstandings between autistic, and non-autistic people. Let's look at how it works in our all-autistic home.
Each of us knows the brain tolerances of the others in the household, after many years together. So, a time of peace and joy involves being sensitive to those, as a way of honouring and loving one another.
Presents are chosen collaboratively, so that each person gets something which is copeable-with. A favourite passionate interest, perhaps. For me, that's maps, for example. We know the pattern of the day, and try to keep to it. Each of us ensuring that we have the right space, the right togetherness-time and quiet time.
For me, usually a visit to church, to celebrate Christmas with fellow Christians, in a service style that helps me rather than hinders. A gentle routine, in safety and in shared fellowship.
At home, the shared tasks of preparing the meal, watched over by the family animals. One of them is a self-trained 'alarm clock' for me, who reminds me when something need taking out of the oven. Collaborative preparations take into consideration what each person can manage. Who is good with sharp knives? Who has the strength to handle heavy pans? Who can cope with the noise around the cooker, and who need to retreat whilst it's on?
Conversation is without eye contact, kept to useful and straightforward subjects, in tones of voice that might sound bored or pedantic to others - but are preserving energy for us. Quite often, no conversation at all, just enjoying sharing a space together for a while.
The meal is simple, doable, and allows for people to depart for a while at any point where their brain needs to rest. Clearing up is done collaborately, again with thought to who can handle heavy and sharp things, and who can cope with the clattering and scraping sounds involved. Noise cancelling headphones at the ready. Sunglasses for any low sunlight through the windows.
Presents, wrapped to the best of our ability (variously excellent, fair, passable and yikes, depending on which person's wrapping we're discussing...), are opened together but with little fuss and bother. A simple heartfelt thank you, or hug, according to the preference of the person. If we don't like it, we don't have to pretend that we do. No-one is insulted by this.
Then time to depart to four corners of the house, to spent equally blissful time with a new gift. Perhaps a shared time watching the Queen's Speech, or in different rooms on different social media. Sharing joy and life in general with people over social media is very much part of my life.
Perhaps a walk with the family pet(s), or - until fairly recently - a foray to the stables to look after the rescued horse we called a member of the family for many years. He lived to a grand age. There was something glorious about being in real live stables at Christmas (and of course every day), in the straw, making sure that all was well and all were fed and watered. Whether through snow or driving rain, whether damp drizzle, dazzling sun or sharp frost, animals need looking after, and sharing time with as companions.
Meltdowns? No. Shutdowns? No. Is everyone happy all day long? Of course not. We're a real family and of course we all have moments of grr, now and again. One or two of them very memorable... But we can stay in 'brain safety limits' together 99% of the time.
Maybe for some. Each family has its own traditions, its own right way.
For us, the important things are just family, friendship and the birth of our saviour. <and maybe maps...>
Each year we're all still alive is its own blessing.
So, wishing each and every one of you peace and love in the days ahead, whether it is your tradition to celebrate Christmas, or to just enjoy time with those you care about.
Friday, 14 December 2018
Generalising, the internet was built by autistic people, and it's run by autistic people. The email systems, the smartphones, the computers, the software, the games, they're created and engineered,programmed and tested by autistic people.
Every time you use such a piece of technology, you can be thankful for autistic minds. Their passionate focus. Their creativity and design skills. Their determination to create something that enables fabulous communication and that works (well, until the marketing people decide to sell something that doesn't work, so the design is altered against the advice of the autistic people...).
The photo above is to illustrate a typical pair of autistic people, both Doctors, logging onto the computer to share a Skype call with their autistic daughter, who is an international researcher now living abroad. Are you challenged by that image? Were you wanting to say, "Ah but surely they can't be autistic...surely they can't be typical"? They're as typical as any other 'type of autistic person' you can imagine.
In the last few weeks, autistic people have used the internet to share collaborative working with me and the teams. Work around conferences, research, family fun days, books, articles. Some of those autistic people are non-speaking or only able to speak sometimes. Sometimes I don't have speech and have to use technology to communicate.
Autistic people have used the internet to share with me, and with others, creative art, poetry, literature, cheering jokes, news articles. Photos of landscapes and flowers, animals and stars, drawings and paintings, just so many fantastic things.
Autistic people have used the internet to share with me, and with others, their lives, their photos of their lovely friends and family. Their interests and hobbies.
And autistic people support one another, online. They also support endless other people online. Sharing love, affirmation, empathy, ideas, wise advice. Keeping a 'look out' for one another. Checking on people to make sure we're OK.
I owe my life to autistic people, who used the internet. That's a debt I can never repay.
I attended a conference recently in which a person who isn't any sort of expert on autism stood up to make an embarrassment of themselves, by suggesting *all* autistic people need to be supervised online to stop us being a nuisance.
I didn't know whether to laugh or cry. What an unprofessional thing to allege. Is this from some myth that autism is all teenage or younger adult white males, sat in a quiet corner using a laptop in evil ways? That stereotype represents a breathtakingly small fraction of autistic people. Do some imagine that autistic parents and grandparents, aunts and uncles, business leaders, academics, Judges, lawyers, therapists, nurses, Priests, Rabbis, Imams and counsellors are all spending their time being a nuisance online, in need of supervision? Truly? If that is their belief, they probably need to seek some modern training.
We need to stop stereotyping.
Let's look at some reality:
Many autistic people are relentlessly bullied by mostly non-autistic people online. (And indeed offline). Mocked, jeered, insulted, targeted, lies spread about us. People sent hate message, obscene images, blackmail threats. Autistic people falsely accused with the most awful things, just to get some fun out of watching the distress. In the last couple of decades as a professional working in this field, and as a safeguarding expert, I've seen the sort of horrors that keep me awake at night. And some of the autistic people targeted? Well, we didn't manage to help them in time. They're now dead. It's heartbreaking.
Instead of looking for ways to conjure up more false hate against one of the most wonderful, and marginalised, groups, let's all find ways to do better.
If you are a speaker, speaking about autism and safe use of the internet, start with how autistic people can find safer spaces online. How to keep themselves safe from predators online. How they can keep themselves safe from people wishing to defraud them online. How they can keep themselves safe from bullies online. How they can seek support from services when they are pushed to want to take their own lives, because the bullies find ways to get into every space they're in, online. 80% of autistic people experience bullying and defrauding, often from people they thought were friends. Over 60% have thought about taking their own lives, so bad is life. 30% of autistic women report being raped. I could go on. I won't.
I worry about a world where we want to allege that autistic people are the primary danger. Nothing backs this up, apart from prejudice.
Talk about differences in communication styles and cultures, alongside and with autistic speakers and specialists. How autistic and non-autistic people can misunderstand one another. How we can both learn to communicate well enough with each other. How both parties can find a clear way to say 'stop' if they need to. And how to seek help if anyone - non-autistic or autistic - isn't respecting 'no'. Autistic people are no more likely to commit a crime than anyone else.
Then, talk about how so many autistic people bring so much to the lives of so many people, not least each other.
Before you speak, think: Is it kind? Is it true? Is it helping to improve the lives of autistic people? Are you speaking with, and affirming, autistic people?
Hurrah for the absolutely brilliant autistic people around us. May we all find ways to thrive.
Thank you for listening.
Thursday, 13 December 2018
Autistic people are asking for freedom and basic human rights.
Freedom to be recognised as different. As worthwhile. As able to use our own communication, our own choice of identity, our own culture.
After decades of being described as deficits, as disorders, as 'mental health conditions', we recognise that other groups have trodden that dangerous path. The path that leads to freedom. Which groups? For example...
Women, with their quest for the vote, and for basic rights and safety. A quest that still goes on today. Remember the old days when women's rights were denied because they were allegedly 'unstable' and 'incompetent'? Dreadful, wasn't it. Hoping for a society that continues to quest for justice for women.
People of Colour, from a catastrophic past, sold to slavery, a fight for equality that goes on today. Remember the old days when Black rights were denied because they were all deemed 'dangerous' and 'incompetent', when of course that was prejudice? Horrific, wasn't it. Our society still has a lot to do on this.
Gay people, who were told they were a 'mental health condition', and imprisoned for daring to be gay. Still fighting for full equality today. Remember the old days when gay people were denied their rights because they were seen as 'perverts', etc, unfairly? Shameful, wasn't it. Still sometimes happens.
So many other groups, unfairly described in humiliating ways. People truly believe this stuff.
We go to some meetings where we have autistic people described by some (and I do mean some, not all) as 'unstable', as 'criminal', as 'incompetent', as 'dangerous'. As not fit to be on social media without a Proper Adult to supervise us. Egads.
Sometimes, I hear non-autistic Professionals say, [paraphased] "We can disagree about what autistic people are described as. It's important we're not just all agreeing with one another."
But...would they be keen to walk up to a woman and say it was a matter of little consequence to call them a 'person with femaleness disorder'? Just a different perspective?
Would they go up to a gay person and describe them as having Gay Spectrum Disorder, and think that was an acceptable point of professional disagreement, just a question of different viewpoints?
Autistic people are living lives too often so appalling that I can barely begin to describe it. Catastrophic lack of access to even the most basic human rights in many cases. The right to safe and good employment, healthcare, education...the list is endless. Catastrophic health outcomes. Catastrophic levels of suicide ideation. The majority have considered ending their lives, so bad has been their experience of prejudice, hate, ostracism, assault, defrauding and lack of provision.
But when autistic people say, "We would like to be called Autistic People, as a group, please", and survey after survey after survey...year after year.... shows the vast majority wish this to be the group name....well, there are a lot of professionals who think they know much better than the autistic people. That autistic people don't deserve their choice of identity. That 'person with autism' will do.
Person with blackness.
Person with femaleness
Person with gayness.
Person with autism.
Which of those sounds OK?
We're not a disease, a deficit, a disaster, an incompetence. We're a people. Our autism is not a detachable item, it's a way of thinking, a way of encountering the world. Some need more support than others, yes, and we need a world that respects that too. A world that supports us, and our families, and all we can bring to the world when enabled. But we get nowhere by ignoring autistic requests.
And if we are serious about changing outcomes, we need to be serious about respect. By all means respect individual choice. But, if a huge majority asks you to show respect by respecting their choice of group description, it's important to listen.
I put it to some in the professionals that they have been in their own 'echo chamber' so long that they have no idea they're even in it. An 'echo chamber' where calling autistic people derogatory and inappropriate things is so normalised that no-one even realises the harm. No-one questions the language, the underlying assumptions. The effect.
Autistic people leave a room in tears, after hearing yet more 'othering' language? "Well, that's just their autism, innit..."
Is it? Or is that a cop-out? This is a chance to reflect. To apologise. To learn.
Let's do better, together. We can. And we must.
I thank all of the professionals, including many colleagues nationally and internationally, who have listened, and continue to listen.
Thank you for listening.