Monday, 14 December 2020

Autistic Children Respond Differently to Something Scary. Why?

 


Let's imagine we're in a village in a farming community somewhere where there are wild animals that could threaten our community members or their livestock.

A lot of predators approach at night, very very quietly.

What skills would work really well, to spot this and raise the alarm?  Or to detect an oncoming forest fire, perhaps?

You need a super-spotter.  Someone whose eyesight and hearing is very highly tuned for differences and unexpected sounds.  Someone who is focused on the surroundings, not on the party going on round the camp fire.  Someone with amazing concentration skills.  Someone who doesn't overreact instantly whilst they are still gathering data on the threat.

And you need a relay person who watches the responses of that person, and conveys their signal back to the camp.  Someone who is 'tuned in' to that person's signalling.

And you need a party of fit, strong, angry people to drive away the predator.

And you need someone to figure out the safest way to keep predators out of barns and enclosures, the best ways to design spears or whatever else to defend children from harm, etc.

Teamwork.

Autistic individuals often have supersensitive hearing and/or eyesight, and are scanning the horizon, not looking into the eyes of other humans.  In fact, we don't often go near loud noisy groups of other humans.  We'll stay on the edges, getting away from the distractions.  Who will be first to spot the danger, there?  We'll also often keep working on improvements in design, long after others would have given up. 

Villages need all kinds of minds, to work together.  Each type is important, whether autistic, other neurodivergence such as ADHD, dyspraxic, dyslexic, or more everyday forms.  Each type has its place.  No type is 'broken'.  The team collaborate to get safety and security.

I see a lot of studies that never moved on from the mistake of the 1940s - that autism is a broken version of Real People.   That unless we are 'normalised' our lives will be terrible and pointless.  Of course some will need support. Some wish for their lives to be different and hope for medical intervention for pain, distress etc, and that's very understandable. But who woke up today and thought, "Hey, I really hope someone describes me as broken, a deficit, a disorder, and imposes an alleged fix on me without even asking me ?" 

Actually, we are all of equal worth.  Every person is a person worth their place in the world.  The enforced normalisation of autistic people has generally led to misery, inauthenticity and increased rates of mental health difficulties and suicide.  Who was it benefiting?  Did people even ask us if we wished to be normalised?  Did they even check the Human Rights legislation explaining it is a human right for disabled people to choose to identify as disabled, (thus autistic individuals have every right to identify as autistic)?

Autistic people communicate differently.  We know this from the recent research.  Every bit as effectively.  Science had missed this for 80 years.  Yes, even the best scientists.  Yes, even from the top Universities worldwide.  So focused on Deficit that they never even thought to check.

The research can be found at http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html along with a lot of other useful, modern papers that have changed almost everything we thought we knew about autism.

I see too many teams assuming that difference must equal deficit.

I see too many research papers where the discussion doesn't even mention the possibility that there may be a group-wide advantage to some people having a brain that does A instead of B.

Think.  Move out of this utter allegiance to outdated theories and historic ways of understanding diversity of brains.

Ask.   Get to know autistic people.  Get to collaborate with us as partners, so that you avoid making fundamental errors in your assumptions, methods and conclusions.

Be humble.  Some people are only alive because an autistic person saved their life.  Hearing the approach of a car.  Smelling escaping gas from pipes.  Spotting a movement in the bushes that no-one else saw.

Be curious.  Work out why something is like it is.

If someone can only see deficit, the deficit is in their own perception.

Thank you for reading. 

Friday, 27 November 2020

Autistic People and 'Theory of Mind'. Brace yourselves.

 

A poll result from Twitter described in this post

I did some mythbusting on Twitter, as I often do.  This question, above, was asking autistic people if they thought others around them were people.  For some, it seemed like a very strange question for me to ask.  
But... 
For many years, autistic people have been told that we have no idea that other people are really people.  That we don't know that others have their own thoughts, and their own opinions.  That we think everyone else around us is an object of some kind, or maybe a robot.

Whole industries rose out of that false belief, including an extremist behaviourist group who still have quite a hold over sectors of the health and education service at the moment.  Here's a charismatic founder explaining how he viewed us:



Lovaas: "You have a person in the physical sense - they have hair, a nose and a mouth - but they are not people in the psychological sense...you have to build the person".

Good heavens above.  He actually thought this.  This is truly shocking, isn't it.  Our beloved autistic children...

That our minds were empty shells, unable to understand others, love, care or anything else.

From that belief-set came the extremist approaches, where it didn't much matter if people did appalling things to us - if we weren't really 'people', Human Rights didn't apply to us.  And, we still see it now.  Those following my Twitter threads on modern research see the results of this appalling misunderstanding in research paper after research paper.  Yes, now, in 2020.  Paper after relentless paper, treating autistic children as disposable unfeeling robots, ignoring their very real distress.

So, what is the truth of the matter?  Do autistic people know that other people are indeed people?  At the top, the result of a poll I ran on Twitter in November 2020.  Yes, it's an informal way of getting answers.  Yes, it's only reached whoever saw it on Twitter, so cannot represent every single autistic person.  For example, it probably doesn't represent the 2% of autistic people who also have severe or profound learning disabilities and probably aren't on Twitter, but it's a really good thinking point.  Just look at the results.  Almost every single person responded that yes, of course they know other people are people with their own thoughts and feelings. https://twitter.com/AnnMemmott/status/1331166576566030336 is the original poll and the comments below it, for those who are interested.

I work in care home settings on a regular basis, as part of review teams. I've worked in the field of autism for two decades.  I meet a lot of autistic people with high support needs and learning disabilities, and I've yet to find one who lacked the ability to know that people are people, or who lacked in caring and love for others.  Sometimes they show that caring in ways that others don't recognise, because others misinterpret our patterns and communications.

The basis of good mental health is "I'm OK, you're OK".  The belief that others have valid ways of being, communicating and making decisions, and that we do too.  The belief that we are all human beings, entitled to basic human rights, and to our own views and emotions.  It's very strange that nonautistic people have decided we're not people, when we are.  That we're only allowed emotions that others approve of.  Any display of anger at injustice is a 'challenging behaviour' which must be erased, if you're autistic.   Which group has problems identifying who is a person, on that basis?  Us, or nonautistic people?  It's not a rude question to ask.  It's an important question.

I would suggest that too many autistic people have been treated pretty appallingly for decades, based on ancient nonsense.  I wish there was a better word to use for it, but the word 'nonsense' will do.  Mostly they'd done experiments about this on autistic children with learning disabilities, rather than on the average autistic adult, for example.  What a strange error.

How many autistic children have been subjected to traumatic 'therapies' in which they have cried, fought, screamed, begged for it to stop, but the team have been told to 'carry on, because this is like chemotherapy - we are stopping the 'cancer' of autism from claiming this child'.  Yes, that's a phrase I've actually had said in hearing range of me.  Yes, that's what is being done, and being authorised.  There's no polite words to describe that approach.  We even have autistic children being given electric shocks if they refuse to obey every instruction.  Just search for Judge Rotenberg Center on any good search engine, if you are feeling brave enough.  

Which people have been behaving like monsters?

I put it to society that we are all human.
We are all of equal worth.
Autistic people communicate and thrive differently.
Different is OK.

Until we learn to understand one another, and see one another as people of that full worth, we will miss out on so much.  We'll miss out on autistic focus, dedication and honesty.  We will miss out on autistic integrity, loyalty and humour.  We will miss out on autistic creativity, friendship and love.

I see all of those things in every autistic person I encounter, because, as an autistic person, I see my people.  People who have been relentlessly kind and helpful to me and my family for many, many years, as of course have nonautistic allies.

Time to put away the old myths.  To realise that both autistic and nonautistic people can share life as their authentic selves.  That both groups can learn something about how the other group communicate, and what the other group need.  That both groups can learn to coexist, and thrive, together.

Time to look around us, and see how many wonderful autistic people are already in your community, your workplace. To read up on how many volunteer, how many are loving partners, how many give tirelessly to charity or to community.  And to acknowledge the worth of every human, whether they do those things or not.

In a time of pandemic, we all need caring and humanity, eh?  Let's offer that, for every person we meet.

Thank you for reading.





Saturday, 14 November 2020

Living in Love and Faith - How the CofE failed the autistic LGBT+ people

 

A heart shape made from small multicoloured shapes representing people


In November 2020, the Church of England produced a website filled with books, videos, papers etc about Christians and what people think of LGBT+ individuals.  There is a nearly-500-page book, for example.  Those wanting to look at the rest of the materials need to register, working through complicated log-in instructions. https://www.churchofengland.org/resources/living-love-and-faith

It might help to know how I fit into this subject.  I wrote the CofE's autism materials, kindly hosted by Oxford Diocese at https://www.oxford.anglican.org/wp-content/uploads/2019/03/Autism-Guidelines-2019.pdf  I have the honour of working with the St Martin in the Fields disability conference planning group, co-running national conferences on autism and other neurodiversities, as well as on disability, with Inclusive Church.  I have recently been working with the HeartEdge group, on recordings around autism, and I'm a fairly-regular on Radio 4, providing prayer and reflection sessions around autism and faith.  I am autistic, a carer to autistic individuals, work for the NHS on autism in my roles for a national and an international autism organisation, and am an external tutor on the topic for University and NHS courses, training Clinicians including Psychiatrists.  I am delighted to work within teams training Clergy and work with the Colleges in providing advice on Ordinands and those doing theological training, and I'm undertaking a second Post Graduate qualification in the subject.  I have written a lot about LGBT+ and intersectionality.  I'm part of both communities, working with so many fantastic people from whom I learn so much.

A third of the two million autistic people in the UK are also part of the LGBT+ communities.  It's a simply massive number.  About 600,000 people. The size of a huge city.   People of all ages, all kinds, all backgrounds.  People of faith, honesty, integrity.

Everything we thought we 'knew' about autism has changed so radically in the last few years with the new research.  Everything.  Gone are the myths about it being some bizarre mental health condition affecting only young white boys in a care home, with an 'empathy deficit', who either spotted trains, did number tricks, or hit people.  What a dreadful set of myths those were, ignoring the voices of autistic people almost entirely.   Autistic people are now generally shown to be filled with empathy, with dedication.  People of all ethnicities, all ages, all backgrounds, all IQs, and as likely to be Christian and in church as anyone else.  Want the academic research on all of this?  Try https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html  Want to find out what thousands of autistic people think?  Try, e.g. https://annsautism.blogspot.com/2020/09/so-what-might-autistic-people-think.html

Why tell you all this?  Because when I read what was in the Living in Love and Faith website about autistic people, I simply wept for the lovely autistic people I know, and for the teams who have worked so hard with the Church of England for so long.  I'm not alone. The shock is everywhere I look in our communities.

The LLF project talks about love and faith, about learning and sharing, about hearing from one another and valuing difference.  It mentions the ethnic minority communities in loving and thoughtful ways many times, as an example of diversity.  Except, it doesn't talk about those positives for us.  

For the 600,000 of us who are autistic and LGBT+,  the main 500 page book has one mention.  Here it is.

"There also appears to be some co-occurrence of gender dysphoria and autism". Er, that's it. That's all there is. Just a medicalised phrase. 600,000 of us compressed into just that, a medical phrasing about gender. It gives a reference to background materials, so I went on a quest to find them. What a quest it is. Register, log in, search, search within the search, half an hour later...eventually.... ...and the shock got worse. Here is the loving, caring phrasing....

This is all the other mentions we get, as autistic LGBT+ people, as far as I can see. Certainly it is all that is shown in the searches. If other stuff is there, no-one thought to make it findable. The paper is written by a Psychiatrist. It's a little like asking a Psychiatrist to write about females in the Church, describing them as all being children and young people, calling them a Male Spectrum Disorder, and suggesting they need tailored 'interventions' so they can be proper people like men are. I kid you not, it is no different to that. It is just shocking. It's just awful. We are not Disordered, thank you, and no, we don't care what a Psychiatrist wrote in a manual somewhere, in the olden days before we knew what autistic people were actually like. We're people. Diverse and magnificent.

The LLF materials are not a medical textbook.  This is not a Psychiatric discussion about autism, is it.

What on earth was that doing in there as the only reference to us?


Autism is not a mental health condition.  Even the National Autistic Society is very clear on that.


What happened?


How did the church forget about all the work we've been doing?


How did the church forget to engage with the fabulous, caring, loving Christian autistic people in their churches?  The ones leading.  The ones praying.  The ones worshipping. The ones providing music and singing. The ones ringing the bells, doing the finances, sorting out the parish bookings.  The ones providing friendship and cheer to others, or deep technical skills in keeping churches going?  The creative autistic people doing the artwork, the stained glass, the carving, the cleaning, the theology, the poetry, the writing.  


How did all of that - all the magnificent diversity, all that love, all that sharing and learning - get compressed into asking a passing Psychiatrist to write a paragraph describing us as a Disorder, for heavens sakes?

We have a church that is so obsessed with seeing us only as a Disorder dealt with by Psychiatrists.  What does that say about their own anxieties?

I am still tearful.  These are my people.  They deserved better.

Autistic people who are also part of the LGBT+ communities often live hellish lives in society, filled with ostracism, bullying, hatemongering, defrauding, violence, assault, and predatory behaviour.  

So many stand at church doors, trembling with fear about what they might find within.  Will it be love?  Or will it be some Psychiatrist dispensing a clinical phrase at them before everyone turns away, anew?  What on earth would you think of an autistic Priest, after reading that description of autism? Do you know how many there are, doing a fabulous job, quietly, lovingly, diligently?  Forced to hide all that they are?   Do you know the links between forcing people to live an inauthentic life, and suicide?  Is that all we have to look forward to, here?

I am grateful to the many colleagues with whom I work nationally on this, bringing their authentic selves into the light.  Moving away from shame and fear.  Finding one another, and learning that autistic people have a naturally different social communication system, many with a naturally different set of senses that work in harmony with those of others to protect people and ensure society thrives.  We've learned so very much about autism.

Church of England, when you wrote all of this material, and shoved us into the back reaches as a 'disorder'....


....Where was the love?










Sunday, 1 November 2020

Finding Light in the Dark of Lockdown

 

Three candles, the middle one of rainbow colours, the two outer ones in decorated glass boxes

In England, another lockdown.  In the midst of autumn, as winds swirl leaves at our feet and clouds darken the skies.

In the dark of evening, so many families separated from those they love.  So many people staring in anxiety at the unopened bills on the shelf, the untouched bank demands and mortgage reminders.  So many waking each cold morning to wonder if today is the last day they can afford to put food on the table before the next payout.  Whether today is the day that the have to close their shop, have that awful conversation with the staff with whom they have shared good times and bad, decade after decade.

So many young people, staring into an uncertain future, separated from so much that was normal, was comforting, was exciting and rewarding.

We wait.

In the corner, a candle flickering, bringing light to the darkness.  A sure and certain light that no darkness can put out.  
A light for all of those in marginalised communities, afraid for a future of hate and further hardship.  
A light for all who are afraid to reach out, lest even more is taken away. 
A light of comfort and of warmth.

And, one day, not too far ahead, the first buds of spring will arise again.

Until then...

Snowdrops



Sunday, 11 October 2020

Autistic People and Sound



 There is a new article about autistic detection of different sounds.  There is is a link to it, below.  30 autistic children had their brains scanned whilst listening to different sounds.  Non-autistic children did, too ('controls').



Sounds like barking and scratching cause a bigger response, for the autistic children.  Noises like laughing and crying showed a smaller response, but arguably not a lot different to the other children.

Because scientists are apparently trained only to see 'deficits' when they encounter us, they described this as a deficit.  Is it?

At the top of the page is a tiger, quietly approaching through water.  Supposing the only chance of saving a village child's life is to hear that tiger approaching?  Even during times when others in the village are being noisy?

Is it a deficit to hear the sound of animals, and the sound of scratching, better than others do?  What might be approaching?

I'd like scientists and researchers generally to think about why autistic people generally do not see ourselves as deficient and in need of fixing.

What are you missing?



That is from the Autistic Not Weird website at  https://autisticnotweird.com/2018survey/   Well, so much for the idea that autistic people need altering, or curing, eh?

This is 2020, not 1940.  We don't need to keep repeating old myths over and over.  Time to ask us, to listen, to start to understand that difference does not have to mean deficit.  In fact, respecting difference could be the thing that keeps you and your family alive. 

Look around you in the labs and academic settings.  How many of your colleagues are autistic, applying diligence, fairness, dedication, deep analysis to situations, afraid to say they're autistic because of this constant quest to portray us as deficits?  

https://www.theguardian.com/environment/2020/oct/11/greta-thunberg-people-like-me-ask-difficult-climate-questions

Greta Thunberg making a similar point about the potential value of different minds, in creating a future for us all.

Certainly, those with higher support needs do indeed need good support, and no-one is doubting that.  

Does that mean we're all 'deficient'?  I put it to you that none of us are.  We are all fully worthwhile, and every single autistic person has something of value to offer the world, whatever their situation.  Some may be keeping you alive right now. 

Look around you.

Change that narrative.

We need all kinds of minds, to thrive.



https://www.hindawi.com/journals/bn/2020/2807946/



Saturday, 19 September 2020

So, what might autistic people think? The Polls.

 

Picture of a blonde woman in a business suit. Above her, two question marks.


What follows is not formal research.  It's very interesting, though.  On social media, one can ask questions of those who happen to be reading what you're writing, on that particular platform, e.g. Twitter. 

These polls can show some intriguing results, especially for considering what autistic people might like in their lives.  Few ask us. 

There is often an assumption that we must consider ourselves to be broken, in need of fixing.  Desperate to be normalised.  Keen to only 'speak' the social communication language of non-autistic people, never our own natural language.  Are these things actually true, though? 

Formal research is important, but nearly all of it keeps focusing on the belief that we're broken.  So, it's not helpful for most of us, at all.  Exceptions apply. 

Let's have a look at what some of the polls show.  


Here's our first one. Do autistic people generally care what happens to other people in our lives?  949 votes.  Huge amount said yes, they do.

What about sexuality and gender?  A useful big poll here:



Yes, you're not imagining that.  Three quarters of the autistic people responding to Pete's poll on Twitter said they have a different sexuality/gender to the standard expectation in society.   That's a pretty large number, eh?

A sobering one, next.  The alleged 'gold standard' of autism compliance-training (such as Applied Behaviour Analysis and forms of Positive Behaviour Support) involves taking a child's favourite things away to use as bribery to get them to appear to be 'normal'.  Usually, to disguise distress, pain and exhaustion, stop using vital repetitive behaviour, and comply with anything they are told to do.  This has been regarded as a really good thing. Let's look at whether autistic people think about this:



So, that's just under 1000 votes, the vast majority choosing 'traumatised' rather than very upset or a bit upset, or unbothered.  I see it done to adults in care, also, who have to sit in empty rooms, with every possession removed.

Traumatised.

If you're not feeling worried about what's been going on, well, you should be.  What on earth has been happening to the autistic people?  Original thread on Twitter and many comments under it - here:  https://twitter.com/AnnMemmott/status/1322089326533087232

Big number answering regarding their views of Applied Behaviour Analysis:  Nearly every one of the thousand autistic people answering this said they thought it wasn't helpful for autistic people.  





Next:


This one had 491 votes and was about whether autistic people can use spoken language reliably.  Most could, but quite a few cannot use it reliably, and a smaller number couldn't use it at all.  Important to remember when preparing research, eh. How are you making your question answering possible?

Moving on...



This one had 885 votes, and was about autistic shutdown and meltdown.  Shutdown - when very overloaded with sensory/social stuff, the brain goes into emergency 'shutdown' and switches off most communication, movement, etc.  Very unpleasant to experience, and why we are so careful to avoid those triggers.  Meltdown - a brain event with same reasons, but behaviour becomes loud and random for a while.  Not a temper tantrum.  Most assumed that autistic people only have meltdowns.  Nope.  Most only/mostly have shutdowns.  They look quiet and peaceful.  It's no wonder we failed to diagnose most autistic people, eh.

OK, next, with 1468 votes, whether autistic people want people to experiment on children using drugs to see if it normalises their social skills.  Strongly no.



And next,
This one is from https://autisticnotweird.com/2018survey/ and asked a very large number of autistic people many interesting questions.  One of them is shown above.  If there was a cure for autism, would they take it?  I've chosen the results for those who do not use spoken language much/at all, and those who have learning difficulties.  Two groups who are assumed to want a cure.  No, they generally don't.  Nearly 70 out of every 100 a definite no.  Only at most 15 out of 100 might consider it.  So, what are we doing when we aim for a cure?  Whose lives are we prioritising?  Those of autistic people?  Or the convenience of others?  What are our ethical choices here, given the right of disabled people to choose their own best lives?  Yes, it's a formal Human Right, and it's in the laws most countries have signed up to (UN Convention on the Rights of Persons with Disabilities (CRPD) )

Let's look again at the 'official' way to treat autistic people in care settings and secure hospitals, which is called Positive Behaviour Support (PBS).  


649 votes.  Taking out those that said 'just shown the results', three quarters of the people responding said no, they did not want autistic people to receive PBS.

So, why is it the standard approach?  It's as if few people ever asks autistic people about things.

I do.

Lots to think about, isn't there.





Above, another useful one.  Does making eye contact with others lead to a better quality of life for autistic people?  Generally no.  In fact, lots of no.  Hundreds of responses.  So why are we enforcing it?

What about sensory difficulties?  We hear that some autism 'experts' claim sensory difficulties aren't actually a real part of many autistic lives.  Well, here's a big poll result.  Nearly 2000 people voting in total, though 11% of those just wanted to see the answers.  Nearly every autistic person voting said they had one or more sensory difficulties bad enough to cause them distress, when others seemed unbothered by those things.  Mmm....so, not part of autism, eh?

A poll described in the text, showing answers to whether autistic people have sensory difficulties



Here's our next surprise.  Is "restricted and repetitive behaviour" in fact often or sometimes because we're trying to avoid sensory overload?  Overload that might push us into a painful, exhausting brain event such as meltdown or shutdown?  Why yes, it is.  And yet on a regularly basis I see academic papers saying there's no link, honest guv.  Did they just make that alleged fact up?  I think so.  Who asked the autistic people about this?  This is why doing environmental 'audits' to check for sensory hazards can make such a difference to autistic lives.

A Twitter poll result showing that nearly all autistic people who responded link their need for predictability with their sensory needs, in some way.



Sometimes, I get people saying, "But Ann, what about the Real autistic people - you know, the ones in a care home?".  There are indeed autistic people with high support needs, though they are no more or less real than the rest of us.  There is no evidence that their views differ so far.  I'd suggest you go and ask them.  Then you'd know. 

Only 15 out of every 100 autistic people has a learning disability. https://bmjopen.bmj.com/content/9/8/e029040.full?fbclid=IwAR1c5qMgMj5JQlXpVb7SNTAEybf6WZnih34Fhunfa1pCvWCx0pbU6aHINMc

Most of those individuals have a 'mild' learning disability that doesn't stop them using social media, writing, and answering things.  Almost all can communicate their wishes, if enabled to do so.  Do we enable them to do so?  Why not?

Do neurodiversity supporters just not care about autistic people with higher support needs?  We get this a lot. Some parents and groups have gotten themselves convinced that the word 'equality' means 'no equality for their child', which is weird.   So I asked if we support human rights for all autistic people.  Here's the result.  Again, hundreds of votes on this poll.  Just about every single person supported human rights for all.  Neurodiversity equality means exactly that.  We want equal human rights for all autistic people.  Simple, really.  There are a handful of autistic people who believe they are superior to other people.  Those are Supremacists, not neurodiversity supporters.  Supremacists exist in every part of society and aren't an autism-thing.





What about cost?  The myth that nearly all autistic people sit around being a Burden to Society and costing $billions?  Well, it would help if we had found most autistic people, in order to get meaningful answers to that.  But we were only locating the ones with higher support needs.  Embarassing, really.  It's improving.  We have some emerging info, though.  This, by Beth Noble in the published Masters paper, showing what 83 autistic people were doing. It's similar to a lot of other studies happening. A different pattern, but most are employed, self employed, students, retired or carers. Very few are out of work.  Certainly many autistic people are underemployed because of prejudice or lack of simple cheap support.  A few really cannot work, and that's understandable, of course.  It's difficult to see how this matches with the idea of us all being this Huge Burden, eh.  Being clear that a person's worth is not defined by the contents of their bank account.  All human beings are of the same worth, equally deserving of a good life and their human rights.

What about the environment?  One study recently alleged that we don't do enough for the planet, and might want to have therapy to make us better citizens.  No, I'm not inventing that. Unfortunately their research method forgot to ask actual autistic people, and forgot to ask what we actually do about it.  An easy mistake to make, I'm sure. Original twitter link to this
This poll showed that nearly every autistic voter said yes, they care about the planet's environment.




I hope that this has been interesting.  It's mostly not science, though some of the above is from formal survey and academic research.  There's plenty more.  As I say, I wish there was indeed more research happening that asked autistic people what we want for our own lives.  We're not the possessions of other people.  We have our own Human Rights, including the right to our own identity.

What I'd like is for research teams to have a read, have a think, look hard at what they're doing, and challenge themselves.  Is this what autistic people actually want?  What information have I been given, and is it actually true, or was it based on ancient info gathered from a group of young men with high support needs?  Have people always just assumed this approach is OK, because someone with a clipboard or a book contract told them so?

Always work as equals with autistic specialists and advisers.  It's a good way to ensure that you are respecting autistic lives, cultures and communication patterns.  And, most importantly, valuing what we want from our lives.

Thank you for reading.



https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html for more of the modern research that changes most of what we thought we knew about autism





Saturday, 12 September 2020

Belonging - about Autism and Church

 

A bricked up church doorway, accessed up unlevel steps

Sometimes, we glimpse some of the other work I do.  On Twitter, I'm well known for academic autism thoughts and some lively threads. 

But a fair bit of my background is in faith work, and has been for some decades now.  Examples?
Writing the guidelines that inform national work in the Church of England, which can be found at  https://www.oxford.anglican.org/wp-content/uploads/2019/03/Autism-Guidelines-2019.pdf  for example. 
Being a guest preacher at St Martin in the Fields in London for the disability conference weekend. 
Being part of the planning processes, and occasionally a speaker, at the events held there in collaboration with Inclusive Church. 
Helping Dioceses (church areas) to pick Vicars. 
And, being a 'fairly regular' for Radio 4's Prayer for the Day series, etc.

I work with fabulous people, and many very inclusive and generous leaders.

But I'm also a very controversial figure in some of our churches.  Various senior Clergy will be nodding, about now, probably mopping their brow with a page torn from 'What Clergy Vestments, Autumn Edition'.  

I have the nerve to ask that we enable people to belong to church.  Examples: 

Autistic people.
People with mental health conditions.
People from other neurodivergent groups, e.g. Tourette's, ADHD, dyslexia.
People with intellectual disabilities.
People who are LGB+
People from ethnic minority communities.
People of different genders, e.g. Trans, Non-Binary.

Notice the word I used.

Belong.

Not 'welcome'.

Belong. 

Anyone can 'welcome' someone, but it doesn't necessarily lead to belonging.  I might be 'welcome' as a very divergent person to sit on a pew by myself whilst the rest of the congregation pretends they can't see me, for example.   I might be 'welcome' to donate money, and the 'welcome' disappears the moment the cash dries up.  I might be 'welcome' to attend, in the hope of curing me of my gender, sexuality and neurodiversity, so that the occasional church leader can earn a nice award for Being Kind To the Different People.  I might be 'welcome' to listen to churches saying derogatory things about me from the front, and showcasing people who think I should be in hell.  I tell you this; I don't feel welcome when that happens.  I feel humiliated and othered.

There lots of ways that 'welcome' means anything but actually welcome.

I'm interested in belonging.

Where do you belong?  Where are you comfortable enough to relax, to close your eyes, to just 'be' alongside others, totally trusting and enjoying their company?  Where are people on your side, wanting you to thrive as your authentic self?  Where is your story a thing that people yearn to hear, or read... to affirm, to listen to, without turning you into a DIY project for them to fix?  Or for God to fix...without your consent.

Where would you be missed, if you didn't turn up?

Churches do a lot of 'welcome'.  But some fall far short of offering belonging.

I don't get that.  I really don't.  Mine is a simple faith.  I follow Jesus.  Others don't, and that's their business, not mine - I am not leaping about trying to convert anyone else.  Jesus said we were to love one another.  He really didn't say, '...except that lot over there - perhaps we'll just offer them a lukewarm half-smile to go with their lukewarm half a cup of tea, whilst hoping they go somewhere else for a church service'.

I'm thankful for artists like Naked Pastor, whose work includes this:




A line drawing. It shows a lot of people drawing boxes on the ground, and Jesus erasing those lines.

Which invisible lines keep divergent people out of groups?

Who decides who belongs?

This week, I'll be one of the speakers at an event.  It's called Shut In, Shut Out, Shut Up: Neurodiversity and Church, and is part of the HeartEdge series.   We'll be talking about some of this.  

As we approach a bracing winter of Covid-19 anxiety, money worries, job losses and worsening mental health crises for so many, our welcome as a church needs to be the most sincere it's ever been.

All belong.

Nothing else will do.

Thank you for reading.

Sunday, 30 August 2020

Making Autistic People Comply - Ethical Concerns around Genetics & Human Rights.

A group of identical young women, each with a bar code on their neck

More and more research is happening around autism.

This week, some papers have been published suggesting we're close to understanding how to control the behaviour of autistic people. How? By altering our body's internal 'programming', its genetics.  One of these papers even compared us to cows who need their own 'programming' altered to make them more tame.  Why?  So cow-handlers don't have to bother earning the trust of the cows.  They can just make cows that do exactly what they're asked to do.

I know some will immediately say, "Well, hey, autistic kids are badly behaved, right?  Don't we need this stuff, so they behave better?"

I've done quite a bit of research into the dodgy stuff published about our alleged 'bad behaviour'.  Here is some of it.  
https://annsautism.blogspot.com/2020/05/autism-and-myths-around-violence.html   Summary - oops, we forgot to mention that generally, non-autistic children are more violent than the autistic ones.  We also forgot to mention that we hadn't even found most of the peaceful autistic children, in most studies.  Why? Because we were mostly only looking for, and diagnosing, the ones who were disruptive in classes and in the family home.  Huge numbers make it through to adulthood without a diagnosis.  They're not on any research paper, because no-one even realised they've been autistic all their lives.  The research we had about autistic 'behaviour' was dodgy as hell, in other words.

And here is a link to a lot more modern research into autism. https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html

About genuine difference, not fault.  About genuinely different social communication that is every bit as effective.  About honesty, integrity, dedication, concentration, fairness.  Unfortunately, too many papers still use research that dates right the way back from last century, when we'd only found a few autistic people, most of them in care homes. No wonder we misunderstood autism, eh?

So, we have these genetics papers.  Each promising a Golden Future where these 'badly behaved autistic kids' suddenly become perfect little robots, just by taking drug X, or Y. Well, that's the plan, as soon as they can make drugs X and Y of course.

But, wait.  What makes society think that this would only work on autistic children?  
What's to stop someone saying, "Hey, this could work on gay people - we could alter their behaviour to turn 'em straight!"
What's to stop someone saying, "Hey, I'm an evil dictator in some despot state and I have $$billions in the Bank.  I know, I can buy me some science and some drug labs, and find me a way to alter the behaviour of the people in my country.  Imagine how much easier it will be if everyone is compliant.  Everyone does as they are told!"

What's stopping that?

In theory what's stopping it is the ethics specialists.  The people who give permission for this kind of research to happen at all.

I'm wondering what's going on, in those ethics rooms. 
Are the ethicists aware that the data on autistic people are wrong?
Are the ethicists thinking through the perils of what could happen, when we make behaviour-control drugs a reality?

I would like to see some proper, robust thinking.
Thinking that takes into account the Human Rights of disabled people, as clearly set out in this:  

https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/the-convention-in-brief.html

That's the Convention on the Rights of Persons with Disabilities (CRPD).

Many countries in the world, including the UK, have signed up to this.

"Countries must protect the physical and mental integrity of persons with disabilities, just as for everyone else (Article 17), guarantee freedom from torture and from cruel, inhuman or degrading treatment or punishment, and prohibit medical or scientific experiments without the consent of the person concerned (Article 15)."

No medical or science experiments without our consent.

Did we consent to having our behaviour controlled with drugs to make us more compliant?

What are the safeguarding concerns around drugging children to make them comply with anything they're told to do?

What happens to them in the hands of a predator?

This isn't some utopia where children skip across the grass, suddenly happy about their lives.

This is hellish, and we need to think very, very carefully about what we're doing here.

Thank you for reading. 



 

Sunday, 16 August 2020

Baffling Behaviourism and Autism

 

A sign saying Door To Remain Closed At All Times

Let's talk about Mary.

Mary, age 28, found herself in a day care centre.  We don't know if she wanted to be there.  Mary had a learning disability.  Mary wanted to leave the room she had been placed in, and go somewhere else.

Behaviourists were employed to stop her.

Here's an extract from the research paper about Mary and some others.  The paper can be found at 

Lehardy, R. K., Lerman, D. C., Evans, L. M., O'Connor, A., & LeSage, D. L. (2013). A simplified methodology for identifying the function of elopement. Journal of Applied Behavior Analysis46(1), 256-270.


So, Mary wants to leave the room.  If she does not ask in Just The Right Way, the Applied Behaviour Analyst physically blocked her.  If necessary, using physical force to stop her, along with refusing communication with her until she complied.

Where are Mary's rights in all of this?

Does the presence of a learning disability mean that Mary has no right to decide for herself what she does with her days?

Does the learning disability mean that Mary must comply with the instructions and physical force of a stranger, to prevent her opening a door?

No, it does not.

But, in the world of Behaviourism, Mary has few rights.  Anything a behaviourist deems to be potentially 'dangerous' can be prevented.  Thanks to the way their research is conducted and written up, if a behaviourist deems that a tiny behaviour could become dangerous in future, that tiny behaviour can be stopped.  By force.  By hour after hour of relentless coercion.

Here's some more examples, from recent research done by the Applied Behaviour Analysis industry (ABA, sometimes now called Positive Behaviour Support (PBS))



Picture of text showing that child must not move their fingers


A picture of text showing that autistic child must not move their finger

I wish these were the only examples I have.  There are journals full of these.

The behaviourist claims that moving a finger today will mean full-on self-harm if we don't stop it.  Some claim that if we don't 'normalise' the child, they will be denied basic human rights by others, so it's only right to do so.  Despite evidence that the normalisation process leads to suicide and poor mental health.

Everything is about the power and control of the behaviourist, and the hopeless cluelessness of the autistic people and people with learning disabilities.  

This is astonishing, isn't it. Utterly inappropriate, in fact, in my view.

Most recently, we have a paper claiming that young autistic children may not move a toy unless the Behaviourist approves of the way they are moving it.  A toy knight must only be played with on a pretend castle and nowhere else, for example.  Not on the table, oh no, that would be wrong.

The child is drilled for hour after hour until they comply with the 'right' way to play with each toy.

I wish I was joking.  Here's the link to a Twitter thread about the paper.  It's not just me.  Look how many different specialists are on that thread, from different spheres of work, saying, "Heck!" or words to that general effect.

 
https://twitter.com/AnnMemmott/status/1294543908693835777

This is brand new behaviourist research.  The child is forced to comply using whatever degree of physical force is necessary.  Forcing their hands onto the toy, onto the right place.

Here's some more footage of Behaviourists forcing children's hands to be precisely where they want them to be.  And, within this link, further commentary on the serious concerns so many now have about this politically-popular but curiously evidenceless theory, now linked to potentially serious harms.

https://neuroclastic.com/2019/03/28/invisible-abuse-aba-and-the-things-only-autistic-people-can-see/

There are other blogs by me on this.  And, by so many others.

Have a read through some of the research around ABA/PBS on this one:
https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html

But, mostly, worry about Mary.  Mary, as we know, is 28.  She isn't allowed to open a door to go to a different room, in her own allegedly therapeutic environment.  People force her to do what they say.

Worry about all of the Marys, and all of the others forced to perform as inmates of an asylum instead of as people living their own choice of best lives.

Let's change this awful narrative, and listen to autistic people about what we actually want.  It isn't ABA.  It's trust, respect, sharing, communication (in whatever way works best).  It's changing the attitudes of the people round us, not forcing us to be perfect robots to our detriment.

This is 2020.  We're not in the 1940s any more.

Thank you for reading.


Tuesday, 21 July 2020

Autism: Are you a GP or other Clinician? Quick tips.

A blonde woman with medium length hair, wearing a jacket. She looks quizzical and there are two question marks near her head

Are you a GP or other Clinician?

Are you desperately short of time and resources?

Worried about how to provide the right care for the 1 in 30 autistic people in your Practice lists?

Firstly, this isn't formal training.  For that, you'll have to go through the usual channels.  This is a quick primer, to get you up to speed on the latest stuff in a few minutes. 
I have a fabulous GP, and I work with many more across the country, in various roles.  Yours is a difficult job, and not made any easier by the current Covid-19 crisis. 

Personal interest: I'm autistic, and a Mum of an autistic adult.  I'm a patient. I train a lot of Clinicians on autism, working within teams, and have done for years.

OK, here we go.
References can be found at 
https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html

It's 1 in 30 of your patients (and colleagues, and staff, and neighbours, and probably friends & wider family...).

It's probably not far off equal numbers of males and females, but many have other genders such as Non-Binary.  Lots of diversity of sexuality also.

It's all ages.

It's all cultures and ethnicities.

It's all IQs.

It's a genuinely different social communication system, not a broken one.

It's a strong need for routine and predictability.

It's a very different way of processing sensory signals, which can mean that incoming sensory stuff is utterly overwhelming.  Especially background noise or flickering overhead lighting.  Fluorescent lighting is a particular peril for many. This may help.  A personal example.  The level of exhaustion from being in such a space, for some of us, is overwhelming.


In terms of current healthcare outcomes, it's not good.  Yet of course autism isn't a disease. There isn't a clinical reason for poor outcomes.
https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/-/media/7079AD79A3874B60A9D2ACF7DC4ADE5E.ashx 
may be helpful for some background info and top tips.
https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/asd-toolkit.aspx is more useful info, though some of it may need an upgrade on language and very latest research.  

Broadly, autistic people are dying way too early. Our suicide rates are breathtaking.  We end up with all manner of mental health situations because of relentless bullying, ostracism, defrauding, violence and sundry other horrors.

So...making it possible for us to get a GP's opinion on our health, or a steer towards good autism diagnosis, is vital.  We're now into virtual world possibilities, which may make it easier for some.  But be aware that many find telephones especially impossible.  Be prepared to offer the thing that works for them, instead.

Watch out for myths.
Yes, we can appear to make eye contact.
Yes, we can smile and joke (often when in great pain)
Yes, we can be well dressed and seeming to be socially 'competent'.  That's called 'masking' and the strain of disguising our autism is strongly linked to really poor outcomes for too many.
Nearly all of us do not want a 'cure' (whatever that would be).  We would mostly like life to be doable, and have access to the same human rights as everyone else.
Most of us have lots of empathy for others.


So, make it OK to be ourselves.
Put up stuff about autism-acceptance.
Refer generally to autistic people as autistic people, but ask the person what their own preference is.
Make it OK to wait somewhere doable, for an appointment that is more or less on time.  Otherwise, your patient will likely flee, unable to take the sensory overwhelm any more.
Be gentle and explain what you're about to do.
Be accurate.  If you say, "Just wait five minutes" but you actually mean, "...well, maybe more than 20", that's a nightmare for us.  Be vague if you can't be specific. "Some time in the next 20 mins or I'll let you know there's a further delay", etc.
Be kind.

Goodness me, we live in a world that is so utterly unkind to us so very very often - that kindness and clarity is vital.

Be aware that our internal 'signalling' is often dodgy, so we may not know how much pain we're in...or where the pain is.  But if someone autistic has turned up at your Surgery, something's wrong.  It's not something we'd do for fun.  Investigate.  
A member of my family played Rugby for weeks with a broken foot.  He had no idea it was broken.  It didn't really hurt.  Even the Physio was sure it was just a bruise, because it wasn't hurting.  It's very deceptive.  Another member of my family was complaining of vague discomfort, but their mannerism was strange, so the team though it was a mental health incident.  They were dead soon thereafter. It was their heart.  None of the signs and symptoms may match what you're expecting.  Expect the unexpected.

Use visuals as well as spoken questions.  Wait patiently for an answer.  It can help to ensure that people have a double length appointment, to allow for extra time.  Allow an advocate or family member to explain if the person cannot, or if they would prefer the other person to do so.

Be aware of how many autistic people also may have hypermobility syndromes, ADHD, sleep problems, PTSD, or epilepsy (amongst other possibilities). Many end up with quite a list of mental health condition possibilities, none of which match, because no-one has considered autism.  Especially the case for autistic females or those from BAME communities.


Get good training, working with autistic team leaders to ensure it's authentic.  Get to know us as people.  And remember...1 in 30 GPs is likely to be autistic, so whatever language you're using around 'disorder' and 'deficit' isn't appropriate, no matter what it says in a manual.  This is a neurodiversity, and a genuine set of differences.  Start from that knowledge, and good things have a much better chance of occurring. 


Thank you for reading.  And thank you for all you are doing to improve our lives.

Saturday, 4 July 2020

Autism, Bullying, Post Traumatic Stress Disorder and Behaviour. The links?

A woman with dark hair sitting on the floor, her arms around her head, seeming very afraid. In front of her, an open laptop computer.
An important study was done by Freya Rumball , Francesca HappĂ©, and Nick Grey, published in 2020.  The link to it is here ,  - warning for medicalised language and discussion around traumatic situations.  

It's about Post Traumatic Stress Disorder ("PTSD").  This is a brain response to extreme trauma, for example a near-death experience, terrible injury, being present in some major disaster.  There's a tick-box list of things that are alleged to cause it.  If it's not in the tick-box list, often no-one is supposed to diagnose it as PTSD, even if the person is clearly traumatised.  Strange but true.

That has failed an awful lot of autistic people, in my view.  


So, this new research happened.  The team found 59 autistic adults to take part in this study.  The team wanted to find out what sort of traumatic things they had experienced, in their view, and whether the people now had symptoms suggesting they had PTSD.


This is one of the pictures from the research. It shows how many of the autistic people had experienced these things, finding them traumatic.  This list is the usual things that cause PTSD (according to the medical lists).

But, the autistic people also listed these as also causing trauma, and these aren't on the usual lists for PTSD:



Many of them experienced bullying as causing immense trauma, for example.  The team did a lot of deep thought about their findings.  This is what they have written:

"A broader range of life events appear to be experienced as traumatic and may act as a catalyst for Post Traumatic Stress Disorder development in autistic adults. Assessment of trauma and PTSD... should consider possible non-DSM-5 traumas in this population, and PTSD diagnosis and treatment should not be withheld simply due to the atypicality of the experienced traumatic event."

In other words, autistic people are indeed traumatised by a wider range of things than the teams were expecting.  And diagnostic teams should be considering PTSD after a wider list of possible triggering events.

"The rate of probable PTSD in our ASD participants following DSM-5 or non-DSM-5 traumas was similar, ranging from 43% to 45%"

So, nearly half of those in this study exposed to bullying/awful social exclusion etc may have PTSD.

Let's think about symptoms of PTSD.  This isn't a full list, and people don't have to have every bit of it.  If you want to look at the full diagnostic lists, this is one here

1. Recurrent, involuntary, and intrusive distressing memories of the traumatic event(s)
2. Recurrent distressing dreams about the events.
3. Flashbacks to what happened.
4. Panic at anything resembling a part of what happened.
5. Avoiding thinking about what happened.
6. Avoiding being near people or places that remind them of what happened.
7. Brain blanks out some detail of what happened.
8. Persistent negative emotional state (e.g., fear, horror, anger, guilt, or shame).
9. Possible irritable behaviour and angry outbursts (with little or no provocation), typically expressed as verbal or physical aggression toward people or objects.
10. Possible reckless or self-destructive behaviour.
11. Hypervigilance (always ultra-watchful for anything resembling what happened)
12. Exaggerated startle response.

Think about the autistic people around you. 
Think about how many are subjected to awful things.  There's good research on that.  See the 'vital research links' blog at 
http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html for a list of some of the main ones. (And a lot of modern info on autism.  Gee whizz, did we ever have this wrong, eh?) 
Think about how much we talk about 'challenging behaviour' or 'attention seeking'. 

Is it?


Think about how often we employ behaviour-control teams to ensure that the autistic people never ever show their internal trauma to anyone.  Never run.  Never hide.  Never self-soothe.  Never scream.  Never cry.  Never fail to concentrate.  The belief-set that all of those responses are just ways to avoid working or being pleasant to others.

What are we doing?

I leave you with this question.


Thank you for reading.




If you would like support, after reading this post, the following organisations may be able to help in the UK:
 https://youngminds.org.uk/find-help/get-urgent-help/#are-you-a-young-person-in-crisis?  for young people

https://www.samaritans.org/how-we-can-help/contact-samaritan/  for adults

https://www.mind.org.uk/information-support/types-of-mental-health-problems/post-traumatic-stress-disorder-ptsd/about-ptsd/  about PTSD and links to support

In the USA, this may be a starting point for information and links to support
https://www.nimh.nih.gov/health/publications/post-traumatic-stress-disorder-ptsd/index.shtml