Theory of Mind, Autistic Children, and the Sally-Anne Test

 

There is an old belief that autistic people lack 'theory of mind'.  In other words, can't understand that others have different beliefs about things, different opinions, different knowledge to us.  The debate is still happening, in academic circles.

One of the tests is the Sally Anne test.  The illustration above shows the principle of it, which is described as...

The researcher uses two dolls, "Sally" and "Anne". 

Sally has a basket;

 Anne has a box. 

The research explains to an autistic child, and demonstrates it using toys etc.
 Sally puts a marble in her basket and then leaves the scene.
While Sally is away and cannot watch, Anne takes the marble out of Sally's basket and puts it into her box.

 Sally then returns.
The autistic child is asked where they think Sally will look for her marble. 

Children are said to "pass" the test if they tell/show the researcher that Sally will probably look inside her basket before realizing that her marble isn't there.

The children are quizzed on this by the researcher.  "Where is the marble really?".  "Where was the marble in the beginning?". 

They're testing whether the children realise that Sally doesn't know where it is, now Ann has moved it out of the basket and into the box.

But, is this what it's testing?

Let's think about this.

Autistic children tend to be more honest, and more focused on social justice.  They are also more dedicated to their hobbies and cherished items, and these have a huge emotional meaning for them. We know this from research.

They've just watched a crime happening.  Anne has nicked the precious, loved marble of Sally, and put it into her box, without permission.  Sally is likely to be devastated and about to enter an autistic brain event as a result.  It's so important to the autistic child to help Sally stay out of that brain event (empathy, theory of mind...).   Keen to help Sally solve the crime quickly and be reunited with her precious item, they point fervently to the box, where it is.  For the autistic child, this is the important thing.  And, Sally will look in the box.  Just not first.  So if asked where Sally will look, they're not wrong in saying 'the box'.  

The researcher is asking them questions during this crime, in spoken words, and expecting spoken-word answers.  In all probability, the autistic child's brain will be in near-panic and there's not a hope in heck of getting a proper answer out of them.  Many such tests are carried out at the end of a long day for the child, in a room that is sensory-hell for them, and which may also interfere with the test results. This should always be factored into any answers.

So, did we test theory of mind?  Arguably, yes, but perhaps not that of the autistic child.  We tested theory of mind & autism knowledge of the researcher, because their assumptions about theory of mind are what's at play here - not potential reality.

This helps demonstrate how autistic culture and neurology can lead to very different answers to those expected.  Individual test results may vary of course - this is to assist thinking, not to say that all autistic children will do the above.

Always, always, ask autistic specialists to help guide test processes, so that we avoid potential errors and can test what we think we're testing.

But my autistic child needs to learn to join in festivities?

I've seen a few parents and carers talking about Christmas festivities and other festivals, and how important it is to them to make their autistic child join in.  Some are accompanied by photos of a screaming child, trying desperately to get away from being sat on the knee of a strange man in a red and white suit, or squashed up next to them.

I'll paraphrase some of the thinking:

"But if we let them get away with not joining in, they will miss out on all the fun!"

"If we don't make them do these things, they will end up being a useless burden to society and in a care home - they have to learn to be like everyone else!"

"They are one of the most Severe autistic children. They can't understand consent and assent anyway, so it's up to us to decide on Santa visits for them."

"Are you saying that I should just let my child not go to the Doctors to get vital healthcare, then?"

It's all very worrying, isn't it.  I'll say this as gently as I can, whilst respecting that this is very difficult for some families and situations because of competing needs:

It's not fun for an autistic child to be forced to endure 'fun' things that leave them distressed.  Not even if it is a family tradition.  It's not needed, and it's not the same as having to work gently and carefully with healthcare professionals to make an urgent medical procedure possible.

Because a child was labelled as 'severe', and does not use spoken words ('mouth words') it does not mean that they have no autonomy.  Their distress, their attempt to get away, is very clearly showing their lack of assent. 

Being given a kind life is not making it more likely that they will end up in care.  It does the exact opposite.  Parents and carers who are able to offer kind alternatives, careful transitions, good explanations and cheerful co-production with their fabulous young person...those are the parents who see their autistic young people thrive and learn.  A child forced into terrifying experiences is only learning fear, and not to trust adults.

Bodily autonomy is also so, so important for all of our autistic young people, wherever humanly possible. They are greatly increased risk of harm from predators, and must not be taught that any stranger can put you on their knee and put their arms round you, and Mummy & Daddy think that's just fine.

AI technology exists.  If you need a photograph of your child in a family photo, and they won't or can't be in that shot, it's a matter of moments to get AI to add them (where appropriate of course).  No need to force them into the shot.

Autistic young people deserve to enjoy family gatherings and festive events, in ways that aren't painful, humiliating, exhausting beyond measure,  or potentially dangerous.  There are many wonderful resources out there that explain how to make such family events ones that everyone can enjoy, with things that truly have meaning for them.  For example the work of Chris Bonnello or that of the team and parents at Autism Central

Wishing all of you a gentle, caring, compassionate, thoughtful and joyful festive season.  One that all the family can cherish.

 

Autistic Meltdown and Shutdown - 'The Last Straw'

 

"Sam was so unprofessional in today's meeting.  OK, so we forgot to arrange a room that had natural lighting and there were fluorescent bulbs in there.  But why not just ask us to change rooms, politely?  Why the big display of behaviour?"

Autistic people get a lot of this.  Well, either as a response to a seemingly-angry 'meltdown', or as a response to an autistic shutdown, where we can't communicate or process what's happening in that moment.

It's often based on a misunderstanding of the physical differences in autistic brains and how they work, and on a misunderstanding of autistic lives and how very, very difficult they are made, by society.

Let's take a look at what's going on.

I've chosen a particular image for this.  It shows a person trying to carry a huge pile of heavy boxes, which are about to topple over.  

Autistic lives are very much like this.  Which extra 'box'/unexpected undoable event will be added to the teetering pile today, and what will happen?  What will be the last straw, to use an expression?

Let's say that Sam wakes up at 6 am on the day of the meeting.  Sam has had about four hours of sleep, because of other health situations that are common for autistic people.  Far more likely to be in chronic pain, for example. Few medical teams realise this or do what's needed to investigate and offer solutions.

Sam opens the post, and finds something from the Benefits people to tell her that her benefits have been cancelled due a misunderstanding...so now Sam has no money to pay for the future support they need to go to work safely and do a good job.  But maybe they'll be paid again if Sam goes through months of stressful Appeal....

Sam also opens three bills that need paying, realising there's now no money to do this.  The anxiety builds.  Then goes to social media to message a friend - but notes how many hate articles and comments there are about autistic people as 'burdens' and 'diseases' and 'costs' who should all be somehow erased from the earth as soon as possible.  The anxiety builds.

Sam would make breakfast, but can't summon the energy to shower, get into workwear, and make something useful to eat,.  So today's another day when Sam leaves for work whilst hungry.  Perhaps there's time to get something before the meeting?

Sam's train is at 7.45am, enough time to get to work.  Except the train is cancelled, and now Sam might be late, which makes her even more hugely anxious and overwhelmed.  There's no money for a taxi, now.   The next train is sensory hell of packed carriages, perfumes, aftershaves, chattering, jostling.  Nowhere to sit down.

Sam makes it to the meeting room, just in time.  Still hungry.  But, there's no outside light, and the room is lit by intensely flickering fluorescent lighting.  Oh no!

Sam's brain goes into an autistic brain event caused by the overwhelm and the sensory overload.  Sam might say something that seems very loud or rude, and may act in an 'out of character' way. Or she may be suddenly very quiet and seemingly 'rude' in ignoring people. The team are horrified.

Sam has little or no idea what's happening, because they are now in a brain event.  This isn't a planned set of responses. Afterwards, she may be so exhausted and bewildered, and very much in need of kindness.

To take us back to the start,  "Sam was so unprofessional in today's meeting.  OK, so we forgot to arrange a room that had natural lighting and there were fluorescent bulbs in there.  But why not just ask us politely?  Why the big display of difficult behaviour? I hope Sam apologises for their appalling conduct!"

It's not anger.  Or being rude.

But I can understand how people misunderstand autistic brain events.

It's similar in some ways for friends who are diabetic and go into a low-sugar situation, where their behaviour becomes erratic, and they may sound cross and 'unprofessional'.  Or friends who have forms of epilepsy, who may likewise behave erratically during a brain 'electrical storm'. 

It's not a choice.  

What can we do to support an autistic colleague who may occasionally having a really bad day and might sound loud or erratic, or seemingly quiet and unresponsive?

Planning in advance, we can be understanding:

We can get really good training, from autistic people.

We can offer a quieter, sensory-friendlier space for them to work in and recover in, realising how important this is, to avoid brain events.

We can realise that it's not appropriate to expect someone to apologise for something that is totally out of their control. Yes, everyone might also have a day when they are actually cross, and I've yet to meet an autistic person who doesn't apologise for getting genuinely angry for no good reason.  But...apologising for a brain event? It would be like expecting a friend to apologise for having an epilepsy event.

We can reflect together, afterwards, on what we can do differently to help them not be in that awful, exhausting situation again. We can use kind phrasing, to check whether they realised what happened.

We can work towards a world that is kinder to the 1 in 30 fabulous people who is autistic.  Really listening and being compassionate, rather than assuming bad motives.

Thank you for reading.

Autistic People - Where are we in 2025? The Positives and Realities

 

Autism. Here we are, 100 years on from the work of Sukhareva, and 80 years on from the original misunderstandings in the 1940s.  So, what's changed, in research?  Almost everything.

I'm an autistic research consultant and lecturer/trainer, currently semi-retired but just as passionate about improving the lives of autistic people, and getting excellent training in place for healthcare, education and many other settings. My decades of work in this field have led to meeting countless hundreds of autistic people of all kinds, in all kinds of settings – including a lot of work with those who are in mental health wards and forensic settings, as well as those with current high support needs for particular things. I provide up to date research summaries for Clinicians, focusing on autism, learning disability and wider neurodivergence.  I have autistic and disabled family members with a variety of other neurodivergent situations in life, and they are deeply loved.

First and most important, some basics that need saying:

All autistic people are individuals, and the information below is not going to apply to everyone.  That’s true of all human beings.

All autistic people deserve a good quality of life and really good support for the things they may find challenging.  Support that asks them what they need, is ethical, considers their Human Rights, and understands that the world has moved on from the ‘deficit models’ and the bizarre beliefs underlying some Behaviourist approaches.  Their families also need that really good support, training and consideration.

Some autistic people have a very tough time in life, because of all sorts of factors.  Many teams were taught that all ‘behaviour’ was ‘autism’, and not e.g. exhaustion, trauma, sensory pain, and other pain from various health conditions, visual impairment, hearing impairment, unmet communication needs, undiagnosed forms of epilepsy causing erratic behaviour, some support staff being bullies, etc. Very unsurprisingly, this combination of things in autistic lives has led to really bad life quality and a lot of anxiety and depression, etc.  We can do so much better than this, as a society.

We have learned so much in the last years, thanks to the tireless work of autistic people generally, autistic specialists and our allies.

Autistic people and allies are leading autism research and ways forward

Take a look at https://monotropism.org/explanations/  Monotropism theory, explaining so much about autistic focus and about why it’s so hard to switch attention instantly.

Also vital, https://journals.sagepub.com/doi/10.1177/13623613221129123  on Damian Milton’s Double Empathy Theory, another groundbreaking autistic-led theory, challenging the idea that communication differences and autistic ways of showing empathy are ‘deficits’ that are solely the fault of the autistic person in some way.  A total rethink is needed.

Another top favourite is the work by McGreevy & team on how we can enable excellent understanding with autistic people by truly listening to their experiences, and how empathy, caring and collaboration are the proper way forward for an exhausted and traumatised autistic population.  https://journals.sagepub.com/doi/10.1177/00221678241232442

I'm delighted to promote work like https://captapnetwork.wordpress.com/2023/09/19/how-to-talk/  which is a guide on how to talk about autistic people.  It links to a huge amount of research, showing the basis of the excellent advice within it.

Also essential, in my view, the huge and ‘eye-opening’ survey findings from some 11,000 people, of which over 3000 are autistic?  https://autisticnotweird.com/2018survey/   Enjoy. So much that dispels myths about autism.  Loads of categories of questions here, and our answers.  Including those from nonspeaking autistic people, and autistic people with a learning disability.

Want the updated version in 2022 with even more answers from autistic people on all kinds of things?  https://autisticnotweird.com/autismsurvey/

So, what's changed in the last decade, in the world of autism?  Arguably, everything.

The Joys of Autistic Children

Let's start with this lovely thing.  https://link.springer.com/article/10.1007/s10803-021-04890-4

In it, the research team asked 153 families about their autistic children and what they're like.

The results?  Loving, happy, having a zest for life, caring for others, sense of humour.  So many other positives. . 

More joy, from autistic interests and movements

Research on nearly 2000 young autistic individuals, showing that their dedicated interests were a joy to them, rarely interfered with their life, and may lead to useful careers and benefits for them and society.  https://link.springer.com/article/10.1007/s10803-020-04743-6    Amongst the most popular focuses of attention, art, music, animals, reading.  So much for the myths about us all being computer geeks of limited creativity, eh?  Isn't research wonderful.

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0209251 Meantime, this new research shows that autistic stimming (repetitive behaviour such as flapping or tapping) doesn't stop exploratory learning.  We also know that it helps regulate and calm individuals, and https://link.springer.com/article/10.1007/s11013-018-9590-y  is a lovely paper about the purpose and joy of autistic stimming.  Check those 'behaviour plans'.  Unless a stimming behaviour is causing damage to the person or those around them, why decide to change it?

https://tandfonline.com/doi/full/10.1080/00131911.2019.1566213  is one of a variety of papers explaining that many autistic children use those specialist subjects as a way to learn, to thrive.  They are essential tools for many of us.

https://journals.sagepub.com/doi/10.1177/13623613251364361 a lovely 2025 study of over 100 autistic adults, asking them about their strengths and joys, including 'executive function' strengths, creativity, character strengths, etc.

Less likely to be criminals, it seems from research. But more likely to be victims of crime

Yes, autistic people were generally less likely to be involved in criminal behaviour, it seems from this well respected team and huge study.   https://journals.sagepub.com/doi/10.1177/13623613221081343

https://www.frontiersin.org/articles/10.3389/fpsyt.2018.00203/full  is also useful in terms of autism and crime.  Much more likely to be victims. No more likely to be criminal.

https://link.springer.com/article/10.1007/s10803-019-04119-5  Another autism and crime paper, noting that "A diagnosis of autism was associated with a decreased risk of committing cyber-dependent crime".  Yes, people diagnosed as autistic were less likely to commit cyber-crime.

Integrity, kindness, fairness and autistic people.  Lots of newer work on this, e.g.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3945921/   is research showing autistic children play more fairly with other children.

https://www.sciencedirect.com/science/article/pii/S1750946718300722

In this one, the autistic participants (20 Uni students) were less likely to tell lies for their personal gain than the non-autistic students.

https://journals.sagepub.com/doi/10.1177/13623613251385029 

Autistic people shared more fairly and generously, with a wider network of people, not just their close friends and family.  

Using autistic senses to protect others?

https://www.sciencedirect.com/science/article/pii/S0891422218302531 Autistic children demonstrated excellent background-scanning abilities in classroom learning situations, and it did not stop them learning. 

Some would argue that having individuals who are better at scanning the environment rather than just the social situation is useful.  For example, being first to smell escaped gas or forest fires, hear approaching predators, etc is a potential societal advantage.   Do many autistic people need ways to tune out oversensitive senses?  Absolutely they do.  Nevertheless, those senses can save lives. Lots of individual accounts in books, online, etc.  Personal anecdote – in 2018 I was in Hawaii, hours before the volcano erupted.  I could smell the overpowering (for me) stench of the rising gases two hours before anyone else on the entire tour noticed it.  It’s not a scientific sample, but it’s worth bearing in mind when textbooks tell you that autism is a bunch of deficits.

Most autistic people have  a good Theory of Mind

What about Theory of Mind?  (The ability to understand that other people have different thoughts and ideas?).  After all, for decades we've been told that all autistic people lack this. Well, no.  Huge piece of research showing there were seemingly a series of horrible misunderstandings. https://psycnet.apa.org/fulltext/2019-75285-001.html

Autistic people have empathy, but it may look and sound different

https://link.springer.com/article/10.1007/s10803-021-05307-y#Sec18 is a 2021 study showing that the 22 autistic adolescent males showed equal empathy to the nonautistic ones.

https://onlinelibrary.wiley.com/doi/10.1002/aur.3197  is yet another study, this one in 2024, showing autistic people had as much empathy as everyone else.

The large piece of research by Chris Bonnello (2018) linked above also looked at results for those autistic people who also had learning difficulties, or who also were non-speaking:

Autistic people have a good set of social skills…with other autistic people

Meantime, brilliant new research from Crompton & team showing that autistic people genuinely do speak a different social language, and work very well with other autistic people, collaborating and sharing.  The problems happen when there's one autistic person and one non-autistic person trying to collaborate, because both misunderstand one another.  https://salvesen-research.ed.ac.uk/people/edinmind

Here's another, showing that same observation that actually we communicate just fine with one another.  It appears to be a misunderstanding between neurotypes, not a 'deficit' on our part.

https://macsphere.mcmaster.ca/bitstream/11375/25433/2/Salt_Mackenzie_2019April_PhD.pdf

Here's another showing that autistic people communicate well with one another and enjoy one another's company (generalising of course) at https://journals.sagepub.com/doi/abs/10.1177/1362361320924906?journalCode=auta

Another?  Sure.  Here's a big one from 2020. Same findings - autistic people get on fine with each other (generalising).  https://www.frontiersin.org/articles/10.3389/fpsyg.2020.586171/full

Have another:  https://osf.io/preprints/osf/efvbc   Yes, here we are again, with autistic people thriving in each others' company and enjoying their communication together (generalising). 

It makes the info in the current diagnostic lists, and the 'checklists for progress' very problematic, doesn't it.  Most of it is now hopelessly outdated.  Some of it may have done awful damage to autistic lives.

“But we should be curing autism!  What about the Severe Ones? Think of the Cost!”

Nearly all do not want a cure. This was the result from asking a huge number of autistic people who are e.g. non-speaking, or have a learning disability. (Autistic Not Weird website - links above).  Similar views can be found in a lot of other spaces, books, sites and pages.

 Respect individual choice, of course.  But, what on earth do we mean by a cure?  Often what people mean is that they are e.g. in pain, and wish someone would sort that out.  Or, they are lonely and isolated and wish people would care.  Or, they are forced out of education and any prospect of a life without poverty, in a society that enables deeply misleading information and hate materials to appear in the Press on a regular basis.  Or, they have had a life of being told they are a cost, a burden, a negative – and end up feeling that way.   The cost thing annoys me; the underlying cost figures were largely based on asking a group of parents to guess some costs, without also asking them about savings.  It also assumed that all of us sit around on sofas all day, not working, and doing nothing for society, which is about as far from the truth as it’s possible to get.  But that’s a research story for another day, eh.

The whole 'autistic people cost more than others' nonsense was based almost entirely on scaremongering guesswork from a single expensive country who insist on expensive (and hopeless) 'interventions', as it turns out from research, and has done immense damage.  But that is a post for another day.  We have only found about 1 autistic adult out of every 10.  We've no idea whatsoever what they do or do not cost.  For all we know, most could be adding hugely to society in countless ways.  We need to stop the catastrophising.

Autistic people are generally absolutely fabulous and I am delighted to share life with so many and listen deeply to them, learning what can make a big difference in their lives.  I thoroughly recommend that approach.

Meantime, my huge thanks to everyone who is working so hard to make an actual difference to autistic lives, to the benefit of the whole of society.

Thank you for reading. 

 

 

 

 

 

"Inappropriate Behaviour". Is it?

 

In the media, a lot of current discussion about celebrities who behave very inappropriately with some others, e.g. men who target younger or less powerful women in their team for unwanted sexualised physical contact ,or bombard them with constant unwanted sexual references after being told to stop.  Some of the media seem convinced that this is a feature of autism.  

It is not.

Unfortunately, we have had a lot of research on autism that is not fit for purpose. There isn't a kinder way to say that.  I review research for a living, and goodness me, the quality of what I see is sometimes heartbreakingly bad.

An example or two?  Certainly.

A research team who decide that a teenage boy taking his t-shirt off is 'sexualised behaviour', without stopping to
a) Ask him why he's doing it or
b) Consider e.g. sensory needs.  Clothing can be intensely painful to wear.  So painful that a young person will do anything in their power to get out of that item of clothing.

A research team who invent a 14 question questionnaire about sex, and give it to around 50 young autistic adult men.  They don't bother to publish the questionnaire.  From its results, they decide that some of the young men use 'inappropriate behaviour'.  Their definition appears to include being Trans (in their view, inappropriate), or e.g. especially liking their loved life-partner's feet, when making love. Or any consensual kink.   In fact, almost anything that isn't 'vanilla sex' is seemingly counted as 'inappropriate'.  Even using this extraordinary invented questionnaire and bizarre categories, only a tiny handful were being 'inappropriate'.

A team who decided that a young man was being 'inappropriate' because he was standing too close to people, without considering that he was deaf, and trying desperately to hear them in busy, noisy spaces.  Few autistic people get hearing tests, or vision tests, or indeed any other healthcare.  Teams are too busy declaring us 'inappropriate' instead, it seems.

This narrative destroys lives.  It wrecks employment prospects.  It damages potential relationships.  It has no place in society when presented as alleged 'facts' about most or all autistic people. It is arguably a form of epistemic violence against a marginalised group. 

There is no research in such papers about 'inappropriateness' from autistic women and girls.  None about older autistic people (beyond age 25).  In fact, the teams barely asked anyone at all, in terms of demographics.  Every one of us is assumed to be a young white teenage male. Or, to behave exactly like that.  What on earth...!  Do you behave just like e.g. a 13 yr old boy in your family?  Of course not.  Why on earth would we?

There seems to be no inclusion of autistic specialists and fellow researchers in the 'inappropriate behaviour' research teams, to help teams do better.

I am very thankful indeed for excellent Journals and autistic research teams, who, with allies, are pushing back against this kind of deeply concerning work.   

Our loved autistic people are shown in research to be generally caring, responsible, keen to get rules right, empathetic, and great campaigners for fairness and justice.  There are so many myths and misunderstandings about autism to unravel, and so much damage to be undone.

The research also shows clearly that autism is not a risk factor for any criminal behaviour.

Be very, very careful what you read, and what you believe, about alleged 'inappropriateness'.  Be equally careful when reading about people who may allege to be 'autistic' after behaving appallingly with their junior team members. (But, can manage to behave perfectly well with their bosses...).  It's not a sign of autism.  It's a sign of something very different.

Thank you for reading. 

Autism escaped from the Clinic? We were never in there.

One of the retired Professors was reflecting on a lifetime in autism work.

She said that a big change was the 'escape' of autism from the Clinic. 

I wonder whether the Clinician reflected fully on their choice of phrase?  

How did the Clinicians imagine that we were some some of 'lab rat' that should properly exist only in a Clinic, or only within their choice of Clinical framework of deficit?

What guided that thinking?  Did it ever include reflection on ethics, on Human Rights?

Did it ever consider how that fed into the current 'asylum mode' of mental health wards, with their cells described as 'seclusion rooms'?  I'd invite people to look at the photo at the top.  I've visited too many wards and care establishments over the years where this is deemed OK, if the person is autistic.  It's not like we're fellow humans with feelings, right?  Er...wrong....very wrong...

Did it ever consider how that way of thinking inspired some of the extreme interventions that require autistic people to stay within 3 ft of an enforcer at all times, and punish them for moving outside of their allocated position?  That this 'elopement' would be listed as a 'challenging behaviour' suitable for punishment?

Did it ever include speaking with us as fellow human beings?  Listening deeply?  Collaborating with us as true partners?

Did they ever consider that we were right next to them in the laboratory, right next to them as neighbours on their street?  Right there as fellow Clinicians, as fellow researchers?  Maybe as their Priest or Rabbi, their Teacher or Bus Driver, their friendly shop worker or factory fitter?

Did they ever consider that we were contributing to family life, to friendships, to society, in a myriad of ways?  Ways spiritual, practical, financial or otherwise.  Endless ways of love, creativity, honesty, integrity and caring. 

We were never experimental objects in a clinic.  But, goodness me, who wouldn't want to escape from any team that believed we were, eh?

I'm very glad of people reflecting on the past, on what they missed, and what they assumed.

I'm very glad of newer approaches and of people becoming allies, turning away from ancient ideas that are being so thoroughly disproved by modern findings.

I'm very glad of teams that are asking autistic people what they actually need to thrive, rather than to barely survive.

Our hearts and souls were never in the Clinic or in any other cold, clinical place.  

Let's learn to love, and to listen, instead.

Thank for you reconsidering what you thought you knew, and thank you for reading.

The quest for a cure for autism?

 

I was listening to the radio, a few mornings ago.  They were interviewing a scientist who was working towards a cure for disease.  He explained how valuable the work was to society, how proud he was to be part of this aim.  The entire interview was portraying him as a hero.  And, in his field of stopping killer viruses, I would totally agree that there's some heroes.

I see the same language, the same aims, the same hero-values, appearing in the quests to 'treat' and 'cure' autistic people.  Some groups of scientists, and people who want us to believe they are conducting some sort of science (e.g. some behaviourists), keen to be the hero, to find the cure.  Keen to allegedly benefit society, to get that award, to raise that trophy.  To share the platform with equally keen parents, who are shaking their hand and crying with relief, giving breathlessly glad interviews to the media about the hero-team that allegedly transformed their child's life...and their family's life. 

Using negative language is very much part of that medical-thinking, and the word-cloud at the top of the page here is fairly typical of the wording in endless science papers.  Papers from teams looking for ways to erase autistic people from the future.  (Well, that's their aim.  Let's be quite clear about it.  A future without autism in it.  No autistic people.)  Such negativity sits in stark contrast to the research, e.g. as set out in https://captapnetwork.wordpress.com/2023/09/19/how-to-talk/ We get much further with positives, kind words, affirming words - whilst of course supporting people well. 

I can totally understand the pull, the attraction, of that set of cure-beliefs.  For nearly 100 years, we had talked about autistic people as nothing more than diseased deficient sub-humans who need curing.  The new evidence is accumulating faster than many of us can post it, and pointing to a very, very different reality, though.  One where it turns out autistic people generally do not want a cure, and do not want to be normalised.  One where many autistic people are explaining that normalisation-enforcement made life worse, not better, for example.  Here's a sample informal poll result, from hundreds of autistic people.  Did enforced eye contact make their quality of life better?  No.  Generally not.

Until recently, few teams had thought to ask the autistic people if they wanted a cure.  Or, if they wanted an intervention to 'normalise' them.  Why?  Because of a belief that autistic people lacked insight into how we feel and what we want.  Thus, it was always safe to assume that Other People Knew Better Than Us.

Do they?  On what evidence?  Once we start poking about in the evidence for this alleged 'lack of insight', we find out it was based on guesswork and misunderstanding, not science.

People started asking autistic individuals of all kinds.  They started reading what autistic people wrote, or signed, or drew. They started really listening.  They started doing big surveys, formal research.  

More examples?  Sure.  Huge modern survey right here:  https://autisticnotweird.com/autismsurvey/
Do take a look.  In particular, take a look at the difference between the aims of the parents/Clinicians, and the aims of the autistic people.  Interesting, eh?

And here, take a look at an impressive challenge to the aims of a lot of the science.  This academic paper is from,  

"autistic clinicians, therapists, educators and researchers, parents, and family members of autistic people of all ages and with all types of support needs, as well as individuals with high support needs. Among us are also autistic people of color, autistic people from the Global South and Asia, autistic women, and autistic people belonging to gender minorities" https://www.liebertpub.com/doi/pdf/10.1089/aut.2022.0017

So, it's a heck of a gamble, isn't it.  We're gambling that the original misunderstandings about autism were in fact right;  that autistic people - including those mentioned above - can't possibly know what's right for our own lives.  That our lives will be transformed by potion A or intervention B, and we just have to trust the Real Adults in the room.

It's very infantilising, isn't it.  Autistic people as eternal children that can never make a decision,  unless it's what to have for tea, or what to wear?   Very much against Human Rights for disabled people, as set out by the United Nations e.g.  https://treaties.un.org/doc/Publication/CTC/Ch_IV_15.pdf

Of course, as the research and surveys show, there are some autistic people who would like a cure.  I respect their views.  But, I can't help but wonder....a cure for what?  

Autism isn't a disease.  It's our brain design.  There's so much research showing differences in function and responses, from the earliest of ages.  A different sensory system. A different communication system.  A different way of perceiving the world.  What on earth would happen if we 'cured' it? How do we know things would be better?  Better for who?  How?   Something to lessen sensory heck would be greatly appreciated by many, for example, but that's not curing autism.  Something to improve focus or daily living skills, perhaps, for some (but have they checked for e.g. co-existing ADHD or dyspraxia? Serious question.)  

The old questionnaires about autism 'cures' were based on us being a Bad Behaviour.  Was autism ever a behaviour?  Or were we only finding distressed autistic people,?  People whose very understandable distress-behaviour was because of general pain, overwhelm, bullying, assaults.  Or because of undiagnosed medical conditions, exhaustion, boredom, lack of enabled communication, sensory pain, etc etc?   So much research shows the lived reality of these things for autistic people, now.  None of those are autism's fault.  They are choices by society, including the choice not to bother researching autistic pain responses & how to lessen the pain.  Or, the choice to portray us as just broken, encouraging others to think badly of us.

Wouldn't it be a better idea to ask the autistic person what they want, & why they are distressed?  Wouldn't it be better to do something to support autistic aims and stated needs instead?  To work with autistic specialists to find real answers to real problems?  To listen deeply, and empathise with autistic lives?

Are a few teams, and some parents, who are questing after a cure/normalisation truly heroes?  That's a very philosophical question, and one we could be here debating for a long time.  What counts as heroism?  Making life even worse for autistic individuals isn't a path to hero status.

For sure, autistic lives - and those of their families - need much, much better understanding and support.  Autistic sensory differences need much better accommodations to prevent sensory pain.  Autistic communication differences need much better understanding in society.  Autistic people need much better protection from predators and bullies.  Autistic people are too often left in grinding poverty, with zero support.  Autistic people are so often denied education and healthcare, & routinely denied endless other human rights.  Will a cure answer these realities?

I am even grateful to endless allies in all spheres, including many parents, many teams, many researchers, many in schools and healthcare facilities etc who are learning, and thinking, and listening, and truly transforming some autistic lives.  I want to be clear about this.  There are some excellent things now happening.  But why has it taken 100 years?  Because we were obsessed with thinking about autism just in negative terms.  

No wonder some hope for some miracle 'cure' that will allegedly transform people and make all of that negativity go away.  Will it?  We have no idea.  None.  We don't know what the side effects of a 'cure' would be.  In fact, there's not a lot of research on autistic people that  bothers to check for side effects or long term harms (example findings about this:  https://journals.sagepub.com/doi/10.1177/13623613221128761 ), or bothers to ask us for consent/assent. See the informal summary at https://annsautism.blogspot.com/2023/01/ethics-and-autism-rights-and.html for example.   I wish I was joking.  

Let's start asking whether autistic people want a cure, or to be 'normal', eh, before assuming that's the pathway to their wonderful future for them,  or a pathway to team heroism?

Thank you for reading.

The hidden nightmare for autistic employees

 

There are endless initiatives trying to get autistic people into employment.  Most portray the autistic people as 'the problem' for employers and society to solve.  This builds on the negative view of autistic people from the last 100 years of researching us and writing about us (mostly without us...).  We are told that we are a burden, a cost, a deficit, a disorder, a danger - the list is endless, and frankly most of it built on nonsense and guesswork. See https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html for some examples.

The attitude of, 'We must get more autistic people into work', also ignores the reality that we've only found about 1 in 10 autistic adults so far.  Our workplaces already have autistic employees and managers in them, doing a great job.  

But perhaps they don't yet know they are autistic.  

Perhaps they cannot yet get a diagnosis due to the barriers in place (financial, practical). 

Perhaps they are afraid of getting a diagnosis, because all they will then hear is how much of a 'problem' they are.  A real worry about being dismissed for Working Whilst Autistic. 

Perhaps they have a diagnosis/have self-identified,  and dare not disclose it, because they fear those negative consequences.  

This is what happens when we portray marginalised people as nothing but problems and costs, of course.  It's not clever.

I've been looking at a piece of new research.  There's a fairly steady stream of stuff like it, so I won't name it here.  But it claimed that autistic employees, "may act inappropriately with individuals of the opposite sex".  Mmm.  Let's look at their research evidence for this, eh.

They claimed that a research team in 2010 had proved this.

I looked at their research paper.  They hadn't proved this.. as far as I could see.  In fact all they did was rely on three old papers, one from 1991, one from 1997, and one from 2001.  Those were from the time when we didn't even have much of an idea that autistic people could exist outside of care homes.  Some of the research was on autistic boys. What any of it had to do with modern employment is anyone's guess.

Onwards I went, looking for this proof behind the statement.  One paper elsewhere relied on something from 1993, which looked at e.g. 12 year olds.  Another had focused on three autistic adults with intellectual disabilities, in 2002.  Widening my search, I tried another bit of research from 1999 which relied on an even older paper from 1981 about people with a learning disability (intellectual disability), of which the research team investigated two autistic people.  

Another paper found one autistic person to study.
Another only examined eight autistic people, none of them employed.

Another, from 2013, focused on 19 yr olds, nearly all male, and of which e.g. 1 of them in a group may have made a rude gesture at someone.

I am not joking.

This is the 'evidence' behind this allegation about us.  There are millions of autistic people in the world, and that's all we have for 100 years of research.  

And, what is it with the 'people of the opposite sex' stuff?  A good third of autistic people are e.g. lesbian or gay.  Erased entirely from research here, it seems. 

I looked for any paper that gave comparative figures for e.g. autistic males versus females (as that's the language used in the papers...).  Nothing.

I looked for any paper that explained what 'inappropriate behaviour' allegedly happened.  Hardly any detail, anywhere. One paper suggested that being anxious or depressed at work counted as 'inappropriate behaviour' if you're autistic.  Really?

I looked for any paper that focused on middle aged and older age groups, e.g. age 40-70.  Nothing.

I looked for any paper that compared the rates of 'inappropriate behaviour' from autistic and nonautistic people at work.  Proper control research, in other words.  Nothing.

So, I asked autistic people about whether they'd encountered e.g. sexually inappropriate behaviour at work.  It is an informal poll, not research.  But it points to a discussion that I haven't seen anywhere in research circles:  What the heck is happening to autistic people in workplaces?

Here's the poll result:

The very big majority of the autistic people responding said yes, they had experienced sexually inappropriate behaviour at work.  It's not valid as a set of statistics, but as I say, this points to something, doesn't it.  And what it points to is pretty horrifying.

Who has kept this negative narrative about us going for the last 100 years, and why?

Whose job is it in Government and services to think about the ethics of constantly portraying a marginalised group as 'the problem', ....and at the same time punishing them for not being in work   .....and not investigating the very real harms that some of them encounter at work?

What a mess.

If we are serious about offering autistic people who wish to work - and who can work - meaningful, safe employment, is this the way to go about it?  I don't think so.  Do you?

Let's do better together, eh?

 

Codes of Conduct, Disability and Neurodivergence - How to Get it Right

 Good Codes of Conduct are a useful thing for so many places.  Well worded, collaborative, sensible and kind, they can add so much to the need to keep people safe, and keep them clear about what's expected of them.

Unfortunately, some Codes of Conduct are written by teams who have not had diversity training.

One in every seven people is neurodivergent.  For example dyspraxia, dyslexia, ADHD, Tourette Syndrome, autism.  An equivalent number of people are disabled.  There may be an overlap between the two groups.  It is a simply huge number of individuals in almost any organisation.  And yet, not one that is often considered.

The world needs all kinds of minds, and there's good research showing the benefits of engaging with disabled and neurodivergent people.  Often able to 'think outside of the box', often perceiving problems that others had overlooked.  Often fantastic at overcoming obstacles, having had a lifetime of having to do just that.  And often with considerable strengths of all kinds to offer.

Those creating Codes of Conduct may have only the very best of intentions, but some of their examples in their Codes may lead to disabled or neurodivergent people being accidentally and unfairly accused of bullying, manipulative, or inappropriate behaviour.    Others may misinterpret neurodivergent body language, face expressions, eye contact, voice tone, or communication style.  Instead of reflecting on the potential for misunderstanding, some misinformed groups may engage in a campaign of 'information collection' about the person in question, all of which becomes alleged evidence against the person.  Communications are analysed and summarised, a damning case presented - but without the key context they needed - the realisation that the person is communicating in ways that respect their own neurology, and their own cultures.  

How easy has it been for people to disclose that they are disabled, or neurodivergent?  How easy is it for them to engage with any inquiry or disciplinary process, in a way that will be fair for them?  How many injustices have inadvertently been carried out?

I'd like to look at some examples where there can be pitfalls.  Again, stressing that people may have the very best of intentions about all of this.

"Repeatedly emailing people with endless information."

Is it bullying and harassing behaviour?  Or is it a cultural expectation, as is common within autistic cultures if someone is concerned that a point hasn't been understood as yet?  Often a simple one to solve, with a query about why it's happening - and a clear guide as to how much is too much. 

"Being drunk at a meeting".   Is that inappropriate conduct?  How are we finding out whether they are indeed drunk?  There may be definite pieces of evidence, of course - but what if the person has speech apraxia, or other neurological conditions such as a past Stroke that may mean that sometimes - or usually - they may slur their words?  For example, when tired or overwhelmed.  Often a simple one to solve, with the right gentle enquiries. 

"Constantly interrupting others".  Is that inappropriate conduct?  Or is it neurodivergence?  For example autistic people use a different signalling system to determine when it is their turn to speak, so there may be genuine misunderstandings and mistimings because of this difference.  Often a simple one to solve, if people collaborate to find a good 'Whose turn is it to speak' system for meetings. A raised hand, a signal of some other kind that work, a good Chair who manages the process well.

"Insulting behaviour".  Is that inappropriate conduct?  Or might it be someone with Tourette Syndrome, where occasional tics may  - for some - result in some rather lively language or gestures.  

"Failing to engage".  Is that an act of manipulation, or is it driven by neurodivergent bewilderment about process, inaccessible systems, utter exhaustion, etc?

"A lack of positive interactions".  Is that inappropriate conduct?  Or is it a determination to seek social justice and a focus on facts, common in some neurodivergent individuals - and which is perhaps combined with face expressions that do not match the smiling, cheerful disposition often sought by groups.  

"Aggressive interactions".  Is that voice tone knowingly aggressive?  It is common for neurodivergent individuals to sound different to 'typical' voices, and to sound cross, dismissive, patronising, 'overly posh', sarcastic etc when there was no such intent. 

Such matters often require us to consider not just disability and neurodivergence, but also matters of gender & ethnicity, for example.  How many women were accused of being 'shrill' and 'hysterical' if they raise concerns?  How many Black individuals have a different cultural way of communicating, potentially misunderstood by white groups?

Good training is vital.

Good collaboration is vital.

Reflection on what might lie behind particular situation is paramount, rather than leaping to conclusions.

Check your own Codes of Conduct, and make sure that disability and neurodivergence are always included, and always taken into account.

Thank you for reading. 

Why is Brand New ABA still relying on evidence from these methods?

 

On social media, I am often told that Applied Behaviour Analysis is now kind, ethical, considers potential harms, and seeks consent or assent from all participants.  I am also often told that it does not use punishments on autistic individuals (or indeed other people).

Oddly, the evidence doesn't support this positive view.

Today, for example, this paper appeared in the research journal lists.  It's from the Applied Behaviour Analysis (ABA) industry.  

https://onlinelibrary.wiley.com/doi/abs/10.1002/jaba.1054

In it, the researchers search for good ways to stop 'extinction bursts' from the children.  In other words, where a child fights back against the ABA team and continues to do the alleged 'bad behaviour', sometimes getting much worse before the child gives up and complies with the team.

The team set out a lot of very troubling information.

The children are as young as three years old.

There appears to be no mention of the children giving their assent to any of this, or how they would signal a lack of assent.

There is no discussion of the ethics of what the team is doing.

There is no mention of considering potential harms or adverse effects from ABA, nor discussion of how the original teams did any follow-up to find out if their alleged treatment 'worked'.

The 'bad behaviour' included trying to escape from the padded cells (no, you're not imagining this - that's where the 'treatment' takes place).  Or, falling on the floor, which could be a form of epilepsy, or a motor co-ordination difficulty, not a behaviour.  Or saying anything the team didn't like.  Or trying to take items of clothing off, which might be a sensory pain situation for the child. 

We are told that the children had this 'treatment' for 6 hrs a day, 5 days a week, for example.

The paper makes a lot of mention of punishers given to the children to force compliance from them.

It's hidden behind a paywall, like most ABA research.

Now, I am sure there will be some who say, "But Ann, this is based on older research.  We don't do this stuff now, honest guv".

But, this is brand new research.  And, if the ABA industry doesn't do this stuff now, where are the team discussing how they don't do this now?  Where is their ethical consideration?  Where is their denouncement of the punishers and the padded cell and the endless compliance-training to stop children from trying to escape this (in my view) living nightmare?  Where is the consideration of consent/assent and how meaningful it is if a child fighting, trying to escape or shouting is all seen as 'noncompliance' and not as 'a child saying no to this treatment'?

Is this brand new ABA?  Or is this yet another endorsement of the very same ABA it's always been?

We need to move on from the 1980s.  This wasn't fit for purpose then, and it's not fit for purpose now, in my view.  

I'll leave you to have a look at the external research on ABA, which can't even find evidence of it doing anything much to 'improve' the behaviour it sets out to 'improve', except in the very short term when stared at by the compliance team. Plenty in this blog.  Plenty on X, where I discuss the ABA findings regularly.

If you are in a position to rethink the 'therapy' your child is having, please do.  There are better, kinder, modern, collaborative, ethical, consensual approaches that enable real progress.  Ask the autistic communities about them.  

Leave this in the past, where it belongs.

Thank you for reading.   

Time to move on from last century? How to reframe diagnostic criteria for autism?

 

The first autism research was arguably carried out nearly 100 years ago, by Grunya Sukhareva (1926). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5696677/  Later, autism was redescribed by others.

Since then, research teams and publications have often laboriously copied out those initial misunderstandings about autism.  They appear in text after text, paper after paper.  And, arguably, diagnostic manual after diagnostic manual.

Research in the last few years has uncovered a veritable treasure trove of new information about autistic people.  About autistic diversity, about strengths as well as areas needing support, about honesty and integrity, and so much more. We know so much more, also, about autistic sensory differences, social communication differences and strengths, and the ways that society benefits from each and every one of us.  The field has expanded from a niche medicalised 'disorder' to a wealth and depth of nuanced, thought-provoking information, stretching throughout contributions to arts, philosophies, humanities, literature, faith & spirituality, and so much more.  

The diagnostic texts continue to lag behind. An example can be found at https://www.cdc.gov/ncbddd/autism/hcp-dsm.html and shows us as a relentlessly long list of deficits.  Not a hint of modern research has touched its pages as yet, it would appear.  Nor is there a hint of the contributions that some autistic people have made to our society.  In research paper after paper, we appear only as burdens on society, as things to be cured, and sometimes, horrifyingly, as some object that is barely human.   What a disaster.

So, what would diagnosis look like, if we put in the newer research?  I've spent decades amongst so many hundreds and thousands of fantastic autistic people, discussing this.  The slides below are informal, based on those many discussions and on the newer research, much of which is linked at https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html.  The pictures below are ones I use as my own 'thinking points'.  But they serve a purpose, as a discussion-point for us all.

There's an old saying - that if you keep doing the same thing, and it keeps going wrong, something needs to change.  Well, we've spent 100 years breaking too many autistic people with the crushing load of total negativity, every day of their lives.  Can we change the narrative and learn to rebuild some lives instead?

I put it to the diagnostic communities that they are wise to work collaboratively with autistic people of all kinds, and read the modern research information thoroughly.  Especially that which shows so clearly that every autistic person benefits from a more positive, kind, respectful framing of our differences, and our support needs.

I'll look forward to discussing things further, on social media elsewhere.