Monday, 31 December 2018

Autistic children being bullied: How to ask & understand

A number of wooden figures, a group on the left, looking angrily at one individual on the right, looking scared

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.

It's heartbreaking.

We can do something about that, together.  Because they deserve better.

Saturday, 22 December 2018

Happy Autistic Christmas.

Tree with red heart ornaments hanging on the branches.  It is winter. There is a church tower in the background, against a blue sky.
It is a special time of year, in our household.  Like many where all are autistic and adults, ours is an autistic way of celebrating Christmas.  One that honours not only the birth of Jesus, but also the communication and culture of our autistic family.

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.  


What's Christmas about?  Is it about glitz and glamour, expense and brand names?  Parties and noise and clamour and karaoke, a game of charades, a 10 mile hike?

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

Autistic People and Use of the Internet.


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

Autism: About self-identity, freedom, and human rights.

Picture of a woman Suffragette, black and white photo, holding a sign asking for freedom

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.



Friday, 16 November 2018

Autism, School Examinations & Tests



How do we measure autistic abilities in a meaningful way?  This is a situation that faces most teaching staff, given that 1 in 30 school pupils is likely to be autistic.  There is little formal literature around the needs and challenges for autistic pupils, so many schools are left having to guess the best solutions.

I'm an autism consultant, Director of an autism-specific company acting as a 'Chambers' for many of the top international names in Psychiatry & Psychology and providing CPD training.  I spent many years as a School Governor with responsibility for SEND, including for a specialist autism school.  Presently, enjoying a Post Grad course towards a Masters Degree in Autism, to build on research around this fantastic neurodiversity.  All of this is done with brilliant supportive teams, many of them entirely autistic. I have been training teaching staff on autism basics and sensory needs for two decades now, with colleagues.  Important to put this advice in context. 


Let's have a quick look at the basics.  Firstly, as we know, autism is a part of human diversity, a difference in how the brain processes incoming information.  It has strengths and areas needing support, and those vary from person to person. Other blogs here describe more about autism itself.   But there are several major differences in understanding.

Firstly, impossible sensory environments.  Fluorescent lighting is in most classrooms, and creates a strobe effect.  Clattering and chatting in surrounding rooms can sound deafening to autistic pupils who are noise-sensitive.  The photo above is how I see a classroom.  Not fun.

Secondly, the instructions from the invigilator or teacher can be baffling for the literal (and many autistic people are indeed highly literal).  "You may turn the paper over now" perhaps means, "You may begin".  But I've seen pupils follow that instruction literally,and then sit there for the next hour, assuming they have now fulfilled all the instructions.  Really, they had indeed done as they were asked.    "Please do the test on the table" may result in a pupil climbing on the table, as seemingly requested.

Then, there's the hell of the questions.  "How many 6s are in 18?"  Er, none at all.  There's a 1 and an 8.  Neither of those digits is a 6.  Or if I write out all the numbers...
1 2 3 4 5 6 7 8 9 10,11,12,13,14,15,16,17,18  clearly there are two sixes amongst all of that.  So, it's either none, or two.  Rephrase the question if you want an answer of three.

Then, there's autistic need for perfection.  We're designed for it, and it's not a flaw.  It's what keeps planes flying, the internet working, medicines functioning well, seatbelts saving lives, parachutes opening on request.  Autistic minds also create incredible art, amazing music.  Making an error is, for us,  an inbuilt emergency and means we absolutely must correct it.  That's the brain design.  So, if we know we've made an error, the impact is simply huge.  Strategies to cope, and correct or go to the next question, are vital, and need thorough practising before.

There's also autistic time difficulties.  How long is an hour?  Some may need assistance with understanding how long they have left to do a test.  Some may need prompting to continue, seemingly getting 'stuck' and suddenly stopping.

We also have the tricky situation around handwriting.  Many benefit from being able to use a laptop rather than a pen, because some have physical difficulties that mean tendons, ligaments and muscles respond differently to commands to move - and handwriting can become painful beyond measure, or difficult to control.  If no laptops are available, give a lot of consideration to a pen or pencil that is really easy to grip.  A good Occupational Therapist can help a lot with design and use.

What if all of this still results in a very 'spiky profile', where there's really good results in some subjects, and something way below expectations in other subjects?  Often schools are prompted to push the pupil to put all their effort into the weaker subjects, but in reality their path to a good career and a successful life is almost always to specialise. The earlier that can be achieved, in good and sensible ways, the better.

Autistic pupils are fantastic, when enabled to thrive, and enabled to give of their best.  Whether they are able to achieve a basic level, or a PhD, each and every one is a person who can add so much to our lives in schools.   Getting the right understanding of autism is vital to let them give of their best.


Thank you for reading.

Saturday, 20 October 2018

Autism - Consent. And about not consenting.

A black and white artwork of two people holding hands.

Content warning for abuse.

In the UK this week, newspaper headlines have detailed the life of a young autistic woman.  She is reported to have a very low IQ.  A Court had decided that she was free to consent to have sex.  It soon became known that she was indeed consenting to sex, and a wide variety of men would turn up to have sex with her.  Some she barely knew, others she didn't seem to know at all.  

Allegedly, she was 'consenting' to this horrific abusive circumstance.  Understandably, concern has been raised and this whole matter is, as I understand it, being reviewed. 

 This was not consent.  This was shameless exploitation of a young adult who was extremely vulnerable.  The capacity for her to have been deeply harmed by this succession of 'opportunists' was there for all to see.  Given her vulnerability, one could argue that stronger words could be used for them.  I shall leave that to the Courts.

I am grateful for the wisdom of Peter T Hughes QC, writing to The Times, 19th October 2018.  I have highlighted part of it in bold.

"Sir, further to your investigation the question should not be whether an individual has the capacity to consent to sexual intercourse but whether that individual has the capacity not to consent.  Only with such capacity does the individual have the freedom of choice."

The capacity not to consent.  That's exactly right.  

In my work as an autism specialist, advising nationally and internationally, I see much planning, thinking and training around 'consent' to all manner of things, and nearly all of it is based around teaching autistic people to say yes.    'Say yes, or you are being defiant.  Say yes, or you are being 'challenging'.  Say yes, or you are not respecting those who know better than you.  Say yes, or people won't like you.'  Paraphrased.

We have a problematic behavioural protocol in place in far too many of our centres where autistic people live or are educated. One saying that any non-compliance can be marked as a 'challenging behaviour' which is to be 'extinguished'.  The individual is taught to say yes to whatever is planned as an 'enrichment activity', otherwise they are not 'accessing the community'.  Often this is framed as 'positive behaviour support'.  In reality, if the individual doesn't comply, they are the not allowed access to things of meaning for them, whether it's hobbies, much needed rituals that are part of autistic life, treats, trips out, anything but basic food, or even access to fresh air and exercise.   I've viewed some of the list of punishments (not phrased that way of course) and been shocked.  

 Saying yes becomes an absolute imperative, to survive 'life inside' in such establishments.

I watched one such 'trainer' online, talking to autistic women.  They had to agree with him.  He was absolutely relentless.  If they disagreed, they were argued with until they left.  If they stood up to him and shouted at him for his bullying behaviour, he'd report them to the social media platform to get them banned for a time.  No-one was allowed to disagree.  He was having a fantastic time.  Less so the autistic women.   Such 'trainers' can get £500,000 an individual a year off the commissioners for services, to train autistic people to comply.   I wish I was joking.  I'm not.

I also wish this situation regarding the young woman was one case.  I fear it is not.  We've done this to a generation of autistic people in too many care settings.  We've never taught them that it is OK to say no.  That saying no is vital. And, as a key part of this, that it is always OK to refuse to consent to sex, or to any other form of intimacy.


This is a t-shirt logo that I value.  On it, the words, "Noncompliance is a social skill".

Arguably, it's the most important social skill of all.

Some autistic people are unable to speak, at times.  Mostly when under stress or afraid.  In the very situations when it may be the most important time to be able to say 'no'.  Are we considering that ability to speak clearly and articulately if someone pressures them into compliance?Plenty are able to communicate clearly and to decide for themselves.  We're not discussing autistic people who clearly have capacity to make their own decisions in this blog.  

To those placed 'in charge' of those autistic lives in care home or other institutional settings, I would say that we need to move away from compliance-training, as if autistic people are dogs.  I cannot think of a worse starting point for humanity.   We need to move to a culture of  integrity, courtesy, respect and thoughtfulness.  A culture where safeguarding and planning means sensible safety, and where Peter Hughes's statement is uppermost in our minds.  A culture where there is access to joy, to beauty, to music, to art, to all that makes life worthwhile - in safe and responsible ways.  And a culture that enables an autistic person to explore relationships  and friendships in happiness and respect.  Yes, some can be free to make an occasional error.  That's part of life.  But never, ever to be left exploited by every passer-by on the street.

Is this person able to say no, and have 'no' respected?  If not, there is no consent.

Sunday, 14 October 2018

Irresponsible Information: Autism

Photo and drawing of a woman at a laptop computer, covering her eyes with her hands, looking sad and shocked

Content warning.  I'm going to discuss some really shocking and untrue statements about autism from professionals.  These are ones that I've heard, or been told about, in just one month.  Information so utterly wrong that I barely know where to begin with the actual facts.

First, a report from a well respected professional.  She had been told by an eminent healthcare practitioner that if there is a murder investigation, you should assume the autistic suspects did it.

Second, a report from another well respected professional.  She had been told by a different eminent healthcare practitioner that autistic people have no empathy, because if they did, they would care for their health more effectively.  One cannot begin to even understand the logic of that one...In reality, many autistic people struggle with the sensory pain of self-care such as showers and tooth-brushing, or may be too depressed to look after themselves.  It's nothing to do with empathy.

Thirdly, a parent reporting that a well respected autism charity alleged that autistic people were very likely to be rapists.  This adds to a psychologist having to be diverted by me before alleging that autistic people were more likely to be perverts.  Shockingly inaccurate, and hugely damaging misinformation.

In each case, I've been there with the counter-information to pass on.  But, how irresponsible are such statements...

We know from very good research that autistic people are by a vast majority repeat victims of crime.  Assaulted, defrauded, bullied, mocked, terrorised, impoverished, sometimes quite literally starved near to death to teach them how to 'comply' with instructions from our alleged-betters.  I've seen so much that has been worrying beyond measure.  And of course the result is anxiety, depression, and a huge number hoping to die, to get away from the pain.  A population desperate for better understanding, friendship, caring, opportunity, thriving, art, music, culture, all the things that make life liveable.

We know from very good research that autistic people are generally more moral and less likely to commit crimes than other people.  But, alas, more likely to be 'framed' by actual criminals, and more likely to be misunderstood by the Court systems and wrongly convicted.

I did a lot of research into the 'murder myth'.  I found, for example, that a number of newspapers had assumed that autism is a lack of empathy.  This is not so.  This was some informal research on the empathy levels for autistic people.


So, having assumed that autism  = lack of caring about others, they looked through Police reports for anything saying the murderers didn't care.  Then the papers invented that person being autistic.  I kid you not.  In reality, there was no greater link to autism.

What about the allegation that autistic people are more likely to be perverts?  I tracked that one back through several decades of research papers.  It came from one study, decades ago, on a small group autistic young men in a care home.  And some anecdotal evidence from forensic Psychiatrists, working with criminals who happened to be autistic.  From that, professional after professional just parroted that data, it would appear - passing it on as if it was fact.  It bears no relation whatsoever to most of the 2 million wonderful autistic people of all kinds  in the UK - young, old, all genders, all cultures, all backgrounds and faiths.  Many of them excellent members of the community, honest, diligent and caring.

We had a well respected church publication arguing that autistic people were likely to be stalkers.  When we looked at the research, it was based on a professional misreading one old report, which said autistic people's attempts to start a relationship might be misread as stalking...but that this was a miscommunication between the two people.  Autistic culture is different, and so is autistic communication.  It's nothing to do with stalking behaviour.  Worse still, other research showed that more than a third of young non-autistic people admitted stalking someone, so in fact it's a society-wide thing.  Not autism.

Where do we even start with this nonsense?  We know that autistic people are dying in extraordinary numbers and far too young, by suicide, by lack of access to healthcare, by lack of recognition of intense pain from sensory and social overload in today's busy, noisy, overwhelming environments.  And yet we have a few professionals adding hate and fear to our lives, for absolutely no discernible reason whatsoever.

I work with many excellent fellow professionals nationally.  People who care about facts, and who care about the lives and welfare of our much loved autistic people.  I want to make that clear, because this isn't a statement about 'all professionals'.

Yes, a few people of any kind can be criminals.  Any kind at all.  A few women can be.  A few men can be.  A few people who are 5 ft 10 can be.  In fact, you can take any category of person on the planet, and find that some are criminals.  And of course if someone of any kind is a criminal, they need to be stopped and a way found to keep others safe.

But autism does not 'cause' such criminal behaviour at any greater rate than for anyone else on the planet, and it never has.  



Thank you for listening. 


Saturday, 6 October 2018

Autism, Transgender and Avoiding Tragedy

Picture of a young woman sitting down, looking sad.  Behind the picture, the flag used by some of the Transgender communities.

Warning for discussion of suicide.

Long, happy, healthy lives.  It's something we want for all autistic people, I think we can agree?  Yet we know from recent research that the suicide rate for autistic people is huge.

For a discussion of this, see for example https://molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0226-4 which talks about the underlying reasons for this, and includes the deeply concerning statistic that, "
 In a large sample of 374 adults newly diagnosed with.. autism.., 66% had contemplated suicide".   Risk factors included having to disguise autistic identity (camouflaging/masking).  Why hide our autistic identity?  Fear of bullying, ostracism, prejudice, desperation to make friends in a world too eager to see autistic people as 'broken' instead of a minority who use a different communication system and usually have a diffferent sensory system.

What of the large numbers of autistic people who identify as part of the Transgender or non-binary communities?  What is it like for them in a world also often hostile to Trans individuals and those of other minority gender identities?

If you want to do a bit of background reading on those gender terms, I would recommend the glossary at this link
Are there large numbers of autistic people who are gender-diverse?  Yes.


An example graph showing the large proportion of autistic people who identify as a gender minority

We know this from recent research.  For example that by George & Stokes, an example above.  Top bar shows the chosen gender identity of autistic people who were described as as female when born.   Bottom bar shows the gender identity for 'typically developing' (non-autistic) people who were described as female when born.  Blue = still identify as a woman. Other colours - not now identifying as a woman.  That's a big proportion of the autistic people who are not identifying as 'woman'.

What are lives like for autistic people who are part of gender minority groups, though?  Again, we have a growing amount of research on this.  https://link.springer.com/article/10.1007/s10803-018-3723-6 is one new article (2018) describing the personal accounts of 22 individuals, and well worth a careful read.


https://link.springer.com/article/10.1007%2Fs10803-018-3469-1 is an important new paper by George & Stokes (2018).  It looks at the mental health outcomes from autistic people who are in sexual and gender minority groups, and of non-autistic people.  Big numbers surveyed.   It's not good news.  Let's have a look at some of what they discovered, on the graph below. 

First, what do the abbreviations really mean?  TD = non-autistic.  ASD = autistic.  GDT = gender minority group e.g. Trans, non-binary. (I call this gender-diverse in this blog).

The scale of numbers across the top starts from 0 (extremely good mental health) to 20+ (increasingly poor mental health).
People who are not autistic scored about 7.5 on average. Pretty good mental health on average.
Non-autistic people who are gender-diverse, average score about 16.  Not so good.
Autistic people who are gender diverse, average score about 20-ish.  Really not good.  Perhaps predictably, being a member of more than one minority group means more stress in an often non-accepting society, and thus more mental health difficulty.



A graph showing the mental health stress on different groups of autistic, sexual minority and gender minority groups

Why are there greater mental health stresses on autistic people from gender-minority groups?  To quote from the research paper, 

 "The increased rates of mental health problems in these minority populations are often a consequence of the stigma and marginalisation attached to living outside mainstream sociocultural norms (Meyer 2003). This stigma can lead to what Meyer (2003) refers to as ‘minority stress’. This stress could come from external adverse events, which among other
forms of victimization could include verbal abuse, acts of violence, sexual assault by a known or unknown person, reduced opportunities for employment and medical care,
and harassment from persons in positions of authority (Sandfort et al. 2007)."

Does transition (GCT: hormones, surgery etc to align the body with their gender identity) lead to better outcomes?  A starting point may be this recent paper, looking at results from 697 Trans individuals, which says, "Body-gender congruence and body image satisfaction were higher, and depression and anxiety were lower among individuals who had more extensive GCT compared to those who received less treatment or no treatment at all".

What is certain is that we need to work together, and well, as different communities.  To support one another.  We need to learn about different aspects of gender diversity and autism, and to find really good ways to lessen the stress on autistic gender-minority people.

There is no doubt that individuals who are autistic and are part of gender minority groups are at high risk of very poor outcomes, and major misunderstandings.  Listening carefully to those individuals, and to the best of the charities and groups who offer excellent support and education services, is really important.

What we cannot afford to do is to pretend that gender diversity is nothing to do with autism, and autism is nothing to do with gender diversity.  Too many young lives are at stake.

Thank you for listening.


Thursday, 20 September 2018

Autistic and Trying to Find a Faith Community?



I'll start by saying that this contains discussion of problematic faith communities, further down, so comes with a content warning for that.

I'm an external adviser to churches.  I'm brought in by some to help explain what autism is, and help prevent mistakes, misunderstandings and problematic ideas.

I'd like a world where autistic people have the choice of looking for a safe, welcoming faith community.  No-one should have to.  Lots of people decide not to explore a faith.  But if you do want to, the last thing you need is a faith community that doesn't want you there.  That's not OK.

So, what should you look for?  I'll talk here about churches, since that's my own faith.  But the same things may be true for other faiths, too.

Firstly, maybe ask other autistic people locally if they know of a good church.  Online autism groups, perhaps?

Maybe there's information online about places that are welcoming for autistic people.  For example in the UK, there's a site called https://www.achurchnearyou.com/ You can put the word Autism in the search box, and a town or city location, and it may show some nearby from the Church of England.  Alternatively, the Inclusive Church network has churches that wish to include as many people as possible, and who should be willing to work with autistic people to find safe and accessible ways to be fully included  
https://www.inclusive-church.org/find-a-church 

Have a look for the website and details of that church.  Anything online that gives you a clue what sort of church it is.  Some have online recordings of their teachings (sermons).

Churches have different ideas about disability or neurodiversity.  It depends on the leaders of the church and their own background.

Jesus was pretty brilliant with neurodiversity and disability.  He had an autistic friend, Nicodemus, for example.  And he usually asked people what they would like for themselves; he didn't just barge in and do things to them without their consent.

It'd be good to find churches that are like that.  Churches where people see you as a friend, and want to know what works for you (if you want to share that information with them).

As we know, autism is a brain design difference, for life.  A diversity.  On average, autistic people are more fair, more keen on social justice, more accurate, more determined to follow rules.  More loyal, and more focused on our specialist areas.  Many are church leaders, musicians, prayer partners, children's team members and all sorts of other roles in church.  So, it's important that a church is willing to learn what it is. And to realise it's every age, gender, background, IQ.

Many autistic people, as we know, also have major sensory and social differences.  We socialise differently, and we encounter the world differently.  It can be too bright, too loud, too intense.  We may use different body language and different speech and writing patterns, which are our culture and our way of communicating (not a broken version of 'real' communication).   So we need churches that are keen to learn about the different communication, and keen to help us stay in sensory and social situations where our brain can cope OK.

Some of us need a bit of extra support, for example knowing what sensory and social hazards are ahead of us in that church service or event.  It is important to have a church that doesn't do the whole eye-rolling thing where this is seen as a Huge Burden.  We are all members of God's church, all loved, all important.  All part of the Body of Christ.  We're not a burden.


So, what different ideas about autism might a church leader have?  Important to start by saying that lots of church leaders are great.  I am part of several absolutely fantastic church groups, now, filled with people I love spending time with.  It's possible.  They're out there.

But here's a few sorts to be wary of (and this applies to many religions, not just Christianity):


Some that believe that autism is a medical condition that needs curing.  Either by doctors, or by praying at the person. It's not.  Although individual autistic people may wish for a cure, and that's a personal choice.


Some that believe that autism is caused by sin, and it's our fault for not being sin-free.  It's nothing to do with being sinful.

Some that believe that autism is our choice, and we could just choose to not be autistic.  A bit like thinking that being (say) 5 ft 6 is a choice, or having size 7 feet is a choice.  Very strange indeed.  But, some think it.   And they're not correct, of course.

Some that think autistic people are a special gift from God, given to the church so that people can show how Kind they are to us.  You may be pitied and helped, whether you like being pitied and helped or not.  Mmm, not good. Others in the church may be given praise for being 'kind' to you, possibly awards and publicity for it.  You will be barely mentioned in the article.  It looks very good for publicity, but is the opposite of enabling and inclusion.

Some that think autistic or disabled people are given 'suffering' by God, and therefore it's good that we 'suffer'.  Because that way we'd get into heaven faster, or similar.  Very strange.  Also wrong.  But in places like that, no-one would give you any assistance if you needed it, because they think God wants you to struggle.  Cruel, really.

Some may think that church should be all about them, and don't like anyone else getting any 'attention'.    So they will tell others that autistic people or disabled people are attention-seekers.  Nope.  Most of us absolutely hate public attention on us, as it is an additional social 'load'.  

Some may claim that all autistic people are 'dangerous'.  In reality, autistic people are generally less violent and less criminally-inclined than other people.  There is no link between a diagnosis of autism and any malicious conduct whatsoever.

A few may think you are an easy target, either for assault, or for taking your money or stuff away from you and saying it was God who commanded it. And you would be punished by God if you said no.   Watch out for that, because that's criminal nonsense.  God never said any such thing.  Ask, if you can, about their safeguarding policies and training.

If your church is getting training on disability/autism etc, who from?  Do the checklist with them:
Is it material written by disabled/neurodiverse people, or in equal collaboration with them?  Equally supported, equally mentioned by name, equally paid (if paid at all).
Is it material delivered by disabled/neurodiverse people who are good and experienced people in training?  Lots of such individuals out there.   Or, at the very least, by allies who promote the work of the disabled/neurodiverse people?
If it's all non-disabled people, talking about us without us, avoid.



The Church of England has updated autism guidelines which are hosted by Oxford Diocese, and written by me in collaboration with many fantastic people and groups. https://www.oxford.anglican.org/mission-ministry/faith-in-action/disability/ is a link to the page.

As I say, there's lots of really good faith leaders out there.  But there's also a few really strange ones who really do need some training.  


Watch, listen, think.  And if you're not sure, stay clear.

Hoping you find a fantastic place, filled with love and hope, if you so wish.  There's good ones out there.  






Tuesday, 4 September 2018

What do we mean by autistic females? A third are Gender Diverse.


We need to talk about autistic females, and what we mean by that.

Rita George has been working on this subject for some years.  The picture above is from her 2016 paper, Here

I'll talk us through it.  It shows the results from 216 autistic people ("ASD" on the chart) who have 'female' on their birth certificates, and 158 non-autistic people ("TD (Typically developing) who likewise have 'female' on their birth certificates.  They were asked what their gender identity is.

For the autistic people that many have been referring to as females, a third do not use the word 'woman' to describe their gender.  Some identify as male or as Transgender.  Some as BiGender, fairly large numbers identify as Genderqueer or couldn't find the right word from that list so ticked 'other'.  So, 1 in 3 of the autistic people we're calling female or woman may not identify with those words.

Why does it matter?  Because we get all these conferences for 'autistic females/women', and all those books for 'autistic females/women'.  There are blogs about autistic females, videos about autistic females...


...and the rest are erased from view by nearly all of the big reports, budget holders, major charities.  In most cases there's not a mention of gender diversity.   There's mention of males. There's not mention of the other gender diversities. 

The other gender groups may be missed from research, because there aren't studies that ask for their participation too. So we are missing up to a third of our data set, and the research on 'all autistic people' may not be correct.

Pretty much everywhere they go, they are missing from the list. 
A full third of autistic people many may think of as women (but who identify otherwise) are being routinely ignored in the places where it would matter to their lives and survival.

Why in particular does it matter?  Because we know from research that individuals who are autistic and have a different gender or sexuality are at far greater risk of bullying, exclusion and really, really bad outcomes from that.  Greater risk of suicide. Greater risk of poor health.  It matters because if we are trying to improve outcomes, we need to know what our starting points are, and we need to work with autistic people in collaborative and good ways.

We're not doing our best for autistic people until we look very seriously at gender identity, instead of only using the male/female binary and thinking we've done the job.  Do I mean that conferences for women should call themselves something else?  No.  Do I mean they should give equal billing to other gender IDs when it's a conference about males or females? No.  I mean that when someone's on that platform talking about "men and women" it would be good to remember the greater diversity too.  I mean when people commission books, they might want to commission more on gender diversities.  I mean when people set budgets for a conference series, they might want to set one for gender ID differences also (and some have - thank you).  I've worked for decades to raise public aknowledgement, diagnosis and inclusion of autistic females, and I also raise the same for the other marginalised gender IDs now.

I've focused here on what we mean by females, because this is the subject of this blog post.   More than 1 in 5 of the autistic people we're perhaps calling male don't identify as male.   We're not assisting them either by failing to notice or include them.

Autistic people are immensely diverse.  We need to be mindful of this, and of our collective responsibilities to seek good outcomes for all.  We need more good research for, by and with autistic people in partnership.  We need more support for those who are struggling to survive, in a society where hate for autistic people is too common, and hating gender-diverse individuals is too often seen as OK.  Seen all the stuff about 'Oh my, there could be a gender-diverse person in the toilets!".  Imagine that life of non-existence for our young autistic Trans individuals, struggling to survive, for example.  The only time people notice them is to hate them for needing to pee....?  Is this the best we can do?

Too many of our loved and wonderful autistic young people pay for all of this with their lives.


Every single life is precious.

Thank you for reading.