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