Monday, 17 May 2021

Apparently autistic people should not use headphones to help with noise sensitivity. Really?

 


A collaborative team of behaviourists and Psychiatrists wrote a research paper, in 2021.  They claimed that an autistic teenager with an intellectual disability should not wear noise cancelling headphones to help with his extreme responses to noise. They believed it simply taught him to escape from the problem.   Instead, they said that he should be trained to cope with the noises around him.  Their logic was that the young person may go out without their headphones, so must be trained not to respond to distressing noise other than in the mildest of ways.  

They conducted experiments on him, first subjecting him to various loud noises and recording his distressed behaviour, including self harm and sobbing.  There did not appear to be mention of ethics, consent, consideration of adverse effects, nor consideration of long-term harms within their paper.

He did learn to be quiet when subjected to painful noise levels, after some interventions were taught to him.
No-one seemed to have asked him whether this was an improvement to his quality of life.
No-one asked him whether he would have preferred to use noise cancelling headphones, a standard disability adaptation for so many autistic people.
No-one seemed to have tested whether this new strategy impacted on his mental health, his ability to focus, or his ability to communicate.


I ran a poll, on Twitter about the general principle of not using headphones.  These are the results.

A poll from Twitter, showing results.  Description in text.

The poll asks autistic people whether they believe autistic people should be trained to cope with noise instead of wearing noise cancelling headphones.

1.5% of the 4693 responses said yes.
5.2% said not sure/maybe.
93.3% said no, I do not agree.

I think that is fairly definitive, in terms of informal polls of social media.  One can hardly claim that it is a small number of individuals.

A lot of people explained why noise sensitivity is not just a poor coping strategy by us, or an irrational phobia.  They explained how noise cancelling headphones may enable functioning, thriving, quality of life, employment, socialisation, friendships.

We generally do not tell people to, for example, do without a coat and umbrella in the rain, in order to get them to tolerate being soaking wet when outside.

Adaptations exist for a reason.  They work.

Thank you for reading.










Tuesday, 23 March 2021

Most Autistic People Don't Like Curved Walls

 

Image shows a Twitter poll which asks whether autistic people preferred straight or curved walls, inside buildings.  A clear majority preferred straight walls. Over 1000 people chose an option.

Above, a poll result from Twitter.  I'd asked whether autistic people preferred walls that were straight, or curved, inside buildings.

As you can see, there were a lot of responses.  As some had only asked to 'show results', their answers need to be discounted - but the figures are very clear.  About three times as many autistic people prefer straight walls in their buildings, not curved ones.  Yes, it's not a scientific randomised sample.  But it's huge.

Why on earth am I talking to you about walls?  Because for the last 15 years or so, people have been told that autistic people like curved walls.

How did they know this?

They knew this because someone made a building with curved walls, and observed some autistic children in a particular high-support care setting were putting their hands on the curved wall and following it round.  This, they thought, proved that 'autistic people' approve.

No it doesn't.  I put my hands on a wall when I'm not at all sure how to navigate that space, when I'm disorientated.  It's not to say, "Oh what a lovely wall, I prefer this one".

So, I looked for formal academic research into this.  Research using proper big trials of lots of autistic people, asking them for their views on wall design and making real evaluations of quality of life and accessibility, using provable measures.  Autistic people of all levels of support needs.  Autistic people of different ages including older autistic people of retirement age.  Autistic people from different ethnic minorities.  Autistic people of different genders.

Nothing.

Nothing at all.

Well, nothing I can readily find as a researcher, anyway.

Yet, everywhere I look, there are documents telling me that autistic people like curved walls.

Look at the Twitter thread itself and some of the comments under it.  Some autistic people do like curved walls.  The majority spoke out very strongly against them.

https://twitter.com/AnnMemmott/status/1374036613953642498


I am glad to be working with groups who are now asking some autistic people what they think about buildings.  Who are listening.  Who are learning.  But we have endless buildings constructed  - or being constructed - with these wretched curved walls, with teams all agreeing with each other that the Autistic People Like Curved Walls. That it helps with 'movement' of autistic people.  A bit like cattle being herded, perhaps?  After all, a well known engineer designed cattle-moving tracks that were curved, to help the cattle move more towards a terrifying end goal.  Let's hope that this isn't anything to do with getting autistic children to keep moving towards treatments they don't want, or activities they can't bear.

"Perhaps severely autistic people like curved walls and it's only you 'high functioning' autistic people who can vote, so it's just your point of view", some say.

Really?

So the evidence that autistic people with high support needs would like curved walls is...?

And the evidence that people who can vote in a poll would have a totally different viewpoint is....?

There isn't any, is there.

No research had been done.

Ask them.  Enable communication.   It's not that hard, actually.

 I hope the people in these new buildings manage to cope.


A curved corridor, one side made of curved glass.



Thank you for reading. 

Wednesday, 27 January 2021

Problems with ABA. An Easier Guide.

 


Applied Behaviour Analysis is often called ABA.

The list below is things that are true for 'pure ABA'.  There could be some ABA teams who don't believe some of these things.  But this list is what they're supposed to believe.

ABA teams believe that autistic people don't know how to behave.

ABA teams believe that autistic people can't learn by themselves.

ABA teams believe that autistic people don't need the same rights as other people.

ABA teams believe that autistic people can have their things taken away from them, to make them behave better.

ABA teams believe that autistic people can be bribed with sweets and biscuits all day, for hours and hours, to make them behave better.

ABA teams believe autistic people must not flap, or rock, or do any other stims, because it stops us learning stuff.  Well, maybe we can flap a bit - but only a tiny bit.

ABA teams believe that autistic people must make eye contact.  Even if it hurts us.

ABA teams believe that autistic people must want the same things as everyone else.

Some ABA teams believe that Mr Lovaas was a great man.  He used to beat children and give them electric shocks. I don't think he was a great man.  I think he was a bully.

ABA teams believe they don't need to ask autistic people for their views.

ABA teams believe it's not important if autistic people feel sad or angry about having ABA.

Some people in Universities think ABA may cause trauma, in some people.

Lots of University people have tried to test ABA to find out if it actually works.  They can't find any good evidence to show that it works.  It seems most autistic children just grow up and learn stuff, like other children.  

ABA teams are often very rude about other therapists, like speech therapists, or occupational therapists. That's not OK.

I don't like ABA.

Most autistic people don't like ABA.  It has got stuck in the 1980s.  This isn't 1980.

There are better ways.  Autistic people deserve respect.  Trust.  Caring.  Being involved.  Being partners, not experiments.






Monday, 25 January 2021

Autism: Late Diagnosis and the Impact of the Scaremongering

 



Late diagnosis, as an autistic person.   For me, it has been a good thing, mostly.  Those that already cared about me weren't surprised.  Those that wanted me to be someone I'm not were bitterly disappointed, and a few wandered off, which is fine.  After all, wanting someone to be things-they're-not isn't a good sign in any relationship.  

But goodness me, that narrative of 'autism as a terrible thing' appears on a regular basis, and it's a destroyer of lives.  Stigma kills.  It impoverishes.  It depresses.

Let me give you some examples.

All the years I was having to hide who I was, as an autistic person and part of the LGBT+ communities, it was exhausting beyond words for me.  Every single day, having to 'mask up' in front of so many people.  Pretend to be nonautistic.  Pretend to be straight.  Every expression, every comment, every action and inaction had to be thought, and rehearsed, and goodness me it was like carrying a set of rocks you could never ever put down.

The diagnosis began that path of me learning who I was, at last.  Learning that I could be fully autistic and fully fabulous. Learning to find my own right ways to do things. 

Learning that 1 in 30 fellow professionals are also autistic, doing such good work in society.

Learning from the hundreds of autistic people with whom I share life. Some in care homes, some with learning disabilities, some with no spoken language, some in high paying jobs, others in ordinary jobs, others in low paying jobs, others volunteering, or being parents, or retired, or being a student.  Others unable to work for various reasons (including society's prejudice).  Every single one of them worth their place on this world.  Brilliantly wonderful people.

But...
For 30 years, I was deemed to be a good businessperson.
Until I disclosed that I was rather more diverse than they first knew.
And then all of a sudden some believed I was incompetent.

For 30 years, I was deemed to be a good pet owner.
Until I disclosed that I was rather more diverse than they first knew.
And then all of a sudden some believed I was incompetent.

There never has to be evidence.  Just hysteria and a 1940s mentality.

And repeat, for various other roles.

Now, luckily in a way, none of this has stood in my way, because I 'came out' at a point where I already had long-established relationships with people who know me and my lovely family well, and where my family were already safe.  That was personal privilege, and I'm aware of how many others risk everything they have, if they disclose.  Or if they are 'outed'.  It's just awful.

But goodness me, can we imagine anything sillier than that above scenarios?

We threaten everyone who is autistic and hiding, in these ways.   We force them to live a half-life, exhausted by the effort of disguising stuff.  

So many autistic people already competent.
We've already proven ourselves.

We need society to stop living in the 1940s, stuck reading out the same lines from a medical book, as if it was the very Bible itself, and never once looking up at the lovely autistic people around them.

Can they choose to raise their eyes and look around them?

Can they look at the autistic-led Professional Practices keeping them and their family well, and safe, and informed?

Can people see the autistic teachers and scholars, skilling up the next generations?

Can people cherish the autistic spiritual leaders, scientists, musicians, artists, authors and poets, bringing so much to our world?  The medics and the philosophers?  The craftspeople and the parents?

How did we ever get to a point where it became OK to treat this magnificent, diverse, honest, diligent population as if we are all the exact equivalent of a fictional young white boy?  Never growing up.  Never learning.  Never changing.  It's just nonsense, isn't it.

Embrace diversity.  And embrace the marvellous, often empathetic and caring autistic people who don't want to hide any more.

Thank you for reading. 

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?