Friday 8 December 2023

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


Silhouettes of the head and shoulders of people, in different colours.

The first autism research was arguably carried out nearly 100 years ago, by Grunya Sukhareva (1926).  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 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  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.

Autistic people must match each of these three areas of social communication difference, and also at least two out of four types of focused behaviour: [not shown on this slide]  a) Differences, throughout life, in social communication and social interaction across multiple contexts: Differences in social approaches, often with longer information-giving rather than back-and-forth conversations.  Social ‘chit-chat’ is often minimised or absent, to avoid social and sensory overload. Differences in body language, face expression and use of eye contact. Often eye contact is sparse or non-existent, again avoiding social or sensory overload and often enabling better listening.  Differences in relationship development, for example commonly enjoying friendship and relationships with some other autistic individuals, but finding it very difficult to adjust to nonautistic ways of expressing friendship and relationships.  Misunderstandings from nonautistic indivduals are often common and there may be a long history of experiencing anger or ostracism from others, seemingly for no reason the autistic person can discern.

Autistic people have differences in behaviour, interests and activities.  At least two of the following must be matched, to get a diagnosis: Use of movement or sound in repeated ways. This is often used to help regulate and focus.  The person may take great joy from pattern, colour, or form, and build their learning about the world from repeated deep study of a particular object or pattern, for example. They may learn spoken language by using words or phrases repeatedly, and use language in ‘short-form’ ways that minimise sensory and social overload for them and for other autistic individuals. They may need deep certainty about forthcoming events, to minimise social and sensory overload and to aid concentration and planning.  It can be of great assistance to them to use particular set patterns of eating, or greeting, for example.  Sudden change can be overwhelming. Autistic people often have a very deep focus on hobbies or interests, one that can lead to great specialisation and expertise for some. This may be lead to areas of expertise that are uncommon in the wider population, or to a greater sense of relaxation and joy. They may have sensory processing differences that impact on everyday life, or which provide particular comfort and quality of life.  There may be either hyporeactivity or hyperreactivity to e.g. pain, temperature, sound, texture, lighting types, smells or tastes, often sensing things imperceptible to nonautistic individuals.

Monday 31 July 2023

When almost all movement or sound is called 'Challenging Behaviour' if you're autistic


A person wearing a t shirt and shorts, standing on a stone pier, looking out over a lake towards mountains

In some of my roles for organisations, I'm commissioned to review research papers about autistic people.

Some of the findings are startling, and not always in a good way.

In recent days, one paper in particular got my attention.  The researchers wanted to know if 'challenging behaviour', or 'problem behaviour' as it is sometimes known, increased or decreased with age, for autistic people. 

So, they looked at all sorts of studies that had been done on this.

Hardly any of them had considered autistic adults.  The assumption in nearly every one of them was that all autistic people are children.  So, nearly every measure of how 'challenging' autistic people are was done on children, not on adults.

They linked to a small number of papers that assessed adults.  Most were from years ago, out of date.  One was at least fairly recent, dating from 2016.  It was indeed looking at 'behaviour' of some autistic adults.  It used a scale that was invented in 1996, not far off 25 years ago.  The scale is called the SIB-R, although other out-of-date scales are available.

I began looking at the measures in that scale.  Remember, readers, these are for autistic adults, not toddlers or primary school children.  Here's some of the measures, which I shall put into everyday words:

Being too clingy.

Not doing as we are told.


Laughing without a good enough reason.

Crying without a good enough reason.

Interrupting without permission.

Rocking (in other words, normal autistic stimming)

Twirling their fingers (in other words, normally autistic stimming)

Talking to themselves.

Eating too much or too little.

Staring into space.  The person in the photo at the top of the page is staring into space.  Deeply challenging, eh?...

Being too worried.

Being sad.

Not able to concentrate.

Sleeping too much.

Being negative about themselves.

Standing too close to someone.

Talking what someone else feels is nonsense.


Well, it's all enough to give anyone indigestion, in my view. 

In fact, the autistic adults can score pretty highly for 'challenging behaviour' from being able to tick off things on this list.  And teams are able to tell others that the autistic adults are in need of serious interventions and major treatments for their 'challenging behaviour' based on these sorts of humiliating, inappropriate, appalling lists.

What on earth is going on?

How is research still using any such measure, bringing it constantly back to the present day as if it is in some way meaningful as a gauge of our fellow human beings, behaving in perfectly ordinary human ways.  Or, behaving in ways that fully respect their autistic neurology and needs?

Are we servants, doing the bidding of nonautistic people, or adults with every right to our own autonomy, our own right to say 'no' and mean 'no'?   Whose power-trip is the above list, eh?

We have a duty and a responsibility to review past out-of-date questionnaires, and to refuse to base our knowledge of autistic people on meaningless measures, designed decades ago for children.

Work with autistic people to design meaningful measures of 'behaviour.  Measures that include distress, exhaustion, pain, trauma and other very real scenarios in too many autistic lives.  Measures that lead to greater understanding of the 'why' of why someone may do something more drastic, for example.

Too much of what passes for fact about autistic lives turns out to be based on stuff that was only true for toddlers,  or on measures that are so out of date they should be binned.  

No wonder we make so little progress in creating quality of life for the lovely autistic people in society, eh?

Thank you for reading. 

Saturday 24 June 2023

"I don't like your tone"


A photo of a blonde woman staring angrily over her spectacles

Decades of life as an autistic person, living amongst hundreds of other lovely autistic people, has given me some insights.  One of these is how often many autistic people get told, "I don't like your tone" or "Why are you so angry" or "There's no need to be sarcastic", or similar. But, they weren't feeling anything negative at the time.  They had no intention of saying anything negative.  Somehow, many nonautistic people hear negativity/anger/sarcasm in autistic voice tones...or in our writing...when that's not what we meant. At all.

What's going on, eh?  Is this really common?

I did an informal Twitter poll.  Here's the results.

A poll result, described in the text

We had nearly 5,000 people taking part.  I asked them if they had ever been accused of being angry/aggressive /a bully/sarcastic, because of their voice tone, but they hadn't intended it to sound that way.   The vast majority said yes.  There was quite a discussion on the post also, with many saying it happens to them very often.  Some related disastrous consequences from some people mistaking their tone or style of writing for rudeness.

The thing is, autistic people communicate in a genuinely different way.  There's plenty of research on this.  For example: allows you to search through for a lot of it.  

Ours is often a very direct, clear style.  We often use shortened sentences, or go straight into a topic.

But it's more than that.  Our actual voice tone, if using mouth-words, can be very different.  We might sound pedantic, or angry, or dismissive, etc - but these are often features of how our vocal cords and mouths are producing language.  Autistic people have genuinely difficulties with 'motor co-ordination' (in other words, getting our muscles to work well to get a result), and voice tone can be one of the things that's affected.

It's so important that people know this.

So many autistic people find themselves in situations where those around us truly believe we're angry, nasty sorts, because they are 'misreading' a genuine difference in how we sound...or maybe how we write.  Some are blamed for brain events where they may produce a seeming display of anger ('meltdowns'). It happens after e.g. extreme sensory/social overload for some autistic people.  But, people often think it's a deliberate display of nastiness.  Some also have Tourette's Syndrome, and some within that group have vocal 'tics' that involve rather lively language.  Again, that's not a deliberate choice of words.

It's vital that society reflects carefully on what it thinks it knows about us, and how it treats us.  Check what we meant, before reaching a conclusion of nastiness, please.

As research shows, autistic people are honest individuals who often have a deep caring about others and the world around us, and a deep desire to see justice and fairness.  Relax about our alleged 'tone of voice', and you're better placed to get to know us as friends and colleagues.  If you're worried about 'tone', say so.  We're usually very concerned to have accidentally given people a cause to worry, and often pleased to be able to find a solution together.

Thank you for reading. 

Sunday 19 February 2023

Autistic Distress: Shutdown, Meltdown, Media and Public Knowledge


A photo of a woman with long dark hair, sitting at a desk on which there is an open laptop. She has her hands covering her face.  In the background, various line drawings.

Too many autistic people are asked to live unbearable lives.

Now deafened and blinded by sensory overwhelm in the world, so many are forced through one painful, exhausting day after another.  Society's misunderstandings and the lack of balance in some media mean that they are also at huge risk of experiencing exclusion, bullying and violence. The research is shocking stuff.  Actually, that statement is true in another sense - a lot of research on autistic people has indeed been shocking in the way it was conducted, with little to no consideration of whether research teams were harming autistic people.  See for a useful starting point for some of the best, and worst, of autism research.  Do brace yourselves.

Understandably, brains can only handle so much.  There's a point where they can't take any more.  When that happens, the autistic person's distress levels reach a point where one of several things may happen. In my daily work, I train on autistic meltdown and shutdown, amongst other states of distress, and these feature in the publications I have co-authored with many others. As an autistic professional, I can also speak from my own set of experiences, and as a parent and carer, from wider experiences within the family.  Note that many autistic people are as yet undiscovered, possibly because their lives are doable enough that they have few or any of these, and therefore don't get diagnosed, or even recognised as autistic.

Shutdown - the autistic person may enter a state that looks maybe like that photo above.  Quiet, distressed, almost unable to move or speak.  This is very common, and many autistic people only, or nearly always, experience this as the distress mechanism.

Flight - they may run away from the distress.

Flop - they may collapse on the floor.

Fright - they may enter a state of unimaginable anxiety and panic.

Meltdown - they may enter a state where they seem angry and as if they are being deliberately violent.  Like the other states of overwhelm, this is a brain response to being totally, utterly overloaded and exhausted beyond measure. Possibly, from good research, in terrible untreated physical pain from healthcare situations.  It is not a choice of anger to get their own way, or because they don't care what happens to other people, or because they want to spoil the fun of others. 

Notice how many descriptions of brain responses there are.

Would you expect the media, e.g. fairly serious newspapers that influence financial decision-makers, to put in a selection of personal accounts reflecting each of these?  I would.

Do they?

No, it appears that they don't.

I did a quick survey of two of the papers in the UK.  Serious ones.  I won't name them, as it's not a critique of them in particular.

Paper 1:  60 mentions of autism, ever.  Fair enough.  A few since early 2021.  But of any of those 60, only 3 mentioned shutdown, for example.  None with any explanation. Article after article on meltdown.  I'll be clear again - those personal accounts are important and yes, they absolutely should be heard.

Paper 2:  Since early 2021, 9 articles mentioning autism.  Autistic children as a 'pain in the arse', as the spoilers of holidays and parties, as the bringers of violence.  Only one article mentioned shutdown, and that only in passing with no explanation.  

None seemed to focus on e.g. autistic people with a learning disability, or autistic people who are nonspeaking.  None seemed to focus on giving people links to useful materials, other than an occasional book on children that featured the words meltdowns and hitting in their opening explanations.

If you were a financial decision-maker, reading those papers as your daily source of information on autistic people, how balanced a view are you getting?  How easy would it be for your Accountant or Solicitor, your Chartered Surveyor or Doctor, your neighbour or friend, to disclose to you their diagnosis or identity as autistic, if that's all you knew, from the Press?  Would you know how to support them and be an ally?  

I'm grateful to every person who makes themselves vulnerable by putting their personal stories in the Press, in an important effort to educate people and create a better end result.  It is vital that we hear each person, and respect fully their set of personal experiences.

It is also vital that we hear and see so much more about the other states that affect autistic people, especially when those are situations that might be the majority.

Recently, very glad for example to see the documentary by Chris Packham on BBC2, Inside Our Autistic Mind, which featured a woman who goes into shutdown, and a man who is non-speaking.  That wider range of voices (spoken, assistive communication or otherwise) is what we need.

It's all very well for society to keep saying, "If you've met one autistic person, you've met one autistic person".  But, we need to move away from the single stereotype of autism = meltdown, please.  We need a world that is a safer, kinder place for all of us - and one where autistic distress, overwhelm & pain are understood in all their presentations, and responded to with kindness & the right support.

Thank you for reading.

Saturday 4 February 2023

Who Are Autism Conferences For?


Clipart of a conference speaker standing at a podium, in front of seated conference attendees

In a recent autism news article, an academic is reported to have said that autism researchers at a conference were very relieved that few autistic advocates were at the event.  Apparently, the nonautistic researchers were comforted to know that if they said derogatory things about autistic people, they wouldn't be facing serious consequences.  

It led to me asking autistic people about their experiences at autism conferences, in an informal poll.

The poll result which is discussed in the text

This is the result.
Of the autistic people who saw the informal poll on my page, only a quarter said they generally felt welcome and included at autism conferences.

It gives us some questions, doesn't it.

If it is in any way representative of autistic conference attendees/speakers generally, what might that say about autism conferences?

Who are the conferences for?

I've been to a few good ones, for sure.  I am thankful for allies and autistic teams who work hard and tirelessly to get things as right as possible.  People who include proper information at the start.  People who put up good, thoughtful access statements, working with autistic specialists.  People who are aware of the need to communicate in writing, sign and speech, etc.  People who think about quiet rooms, and clear information on the day.  About pacing and how to feed back in ways that allow for thought.  People who understand intersectionality and are aware how many autistic people also have other neurodiversities, disabilities or situations in life that means trekking endless miles and paying £500+ to attend is totally beyond their reach.

I looked at some of the recent research on autistic people (2022) from people who speak at conferences.  Too much of it was filled with dehumanising language.  Autistic people, including of course our research colleagues, are described variously as disordered, deficient, as having 'aberrant' brain connections.  The narrative was endless.  The research teams wanted cures for our 'behaviour' and treatments for our 'restricted interests'.  Genetic alterations were suggested to make us the sort of people they assumed we wanted to be, without asking us.

Are conferences for nonautistic researchers, so they can continue to describe our loved autistic people in too-often negative terms, unbothered by challenge from those who have to live with the consequences?  Those who have to face employers who are told we are Deficient and Disordered?  Those who face having their children taken away from them if they dare disclose that they are an autistic parent?  Those who face a life of fairly continual discrimination from a society fed this story about us, without us?  Those who are fellow researchers, afraid to ever say they are autistic, because of the stigma?

There are very good research challenges to that negativity.  Teams of autistic people and allies who are pushing hard against 'deficiency' narratives.  Teams who are pointing to the growing research focusing on a more balanced and fair set of perspectives.  Teams upholding the voices of autistic people of all kinds and all backgrounds, who want to be heard.  

Autistic people don't want to be outside, being given an update on which awful words were used to describe us in the halls of power.  Waiting to find out what fate our alleged superiors have in store for us.

These are our lives.  Our families.  Our futures.

It's not good enough that only a quarter of autistic people in this survey felt welcomed and included in the very conferences alleging to make a difference to our lives.

We must do better.

Thank you for reading.

Saturday 28 January 2023

On love, in the face of fear


A rainbow coloured umbrella sitting upon parched cracked dark soil

In recent days, the autistic communities have sat in shock or bemusement at an article which was written about some of us.  Me included.  

It is not clear what the author was trying to achieve. 

What it did achieve is an outpouring of love and concern, from so many in the autistic communities.  Yes, certainly some shock and anger also.  So many rallied round those who had been mentioned in the article, to offer their encouragement, support and affirmation.  So many others sat in small groups, holding one another close and letting tears of dismay fall.

The odd thing, amongst it all, is that the author who had penned those words has a long track history of supporting - and writing about - minorities.  About how important it is to encourage and uphold them.  About how important it is to include and listen to them.  About how vital it is to benefit from their experiences.

And yet, somehow, that journalist hasn't yet made that next step of understanding.  That autistic people are also a minority.  That we are also in need of encouragement and support.  That we are also human beings, able to express pain and shock, fear and dismay.  That sometimes the impact of oppression is the creation of anger against injustice - and yes, it can be hard to hear that pain, pain that comes from a lifetime of oppression.  Being clear straight away that I do not condone any illegal action or any action that breaks the rules of social media. 

Good journalism is about being inquisitive, something that the author has shown in good measure in previous articles.

It's about thinking, "What was it like for that person, to live that life?  What is it like now, to experience what they experience in their lives from those with power and prestige?"  It's about that painful opening of memoirs, notes, letters, blogs, books.  It's about listening and hearing beyond any temptation to think, "It sounds like they are being rude for no reason - I shall not listen".

Hearing pain...listening and loving....that takes courage.  And goodness me I see acts of courage around me so often in the world we inhabit.  

Autistic people are Mums, and Dads.  They are neighbours and friends. They are colleagues and companions.  They are faith leaders and artists, musicians and philosophers.  So many hiding, because of the cruel narratives out there - because of the power that others have to harm them if they disclose.  It's why I have been pleased to work with so many kind and generous allies who have laid down that power and control, and who have wanted to listen to a wide variety of autistic people.  It's why I have spent a lifetime working thoughtfully for social justice in various ways, for various groups, including those needing safe spaces in Refuges.  

I encourage good critique of potentially damaging materials within my role in the Critical Autism Studies academic work I do.  A reality we know from good research is that so many autistic people lead lives filled with ostracism, hate and violence from others.  So many have diagnosable levels of trauma as a result - another reason why the assumption that we have equal power in discussions needs testing and challenging.  It is so important to challenge narratives that portray people as less than human, perhaps - or as people who are nothing but a burden, a disease, a deficit.

Autistic people are often also part of the LGBTQ+ communities, often part of the Black and Asian communities and other minority ethnic groups.  Many are living in poverty, and in lifelong physical pain, anxiety or depression, because of the challenges society places in their path.  Many are women who experience all of the targeting and marginalisation that so many other women experience in society.  This intersectionality makes life harder, and harder, for many - because of the multiple layers of misunderstanding or hate that may be found, from some.  Autistic people are of every age, and the older ones amongst us are facing a fairly bleak future because of society failing to even realise most of us existed, let alone make retirement doable for us.  Those of us who also act as carers for family members are left wondering what on earth the future holds.

Autistic people may sometimes be erased from opportunities to contribute, made out to be either too incompetent to listen to, or too competent to listen to (go figure...).  The standard routes of being heard are often closed to us, and usually any passing nonautistic person is believed to be more expert in autism than any of us who have lived it and studied it academically for many years.  Some give freely of their time to news outlets, and then have their words misportrayed or altered to fit whatever negative narrative those in power want the public to think.  It's awful.   It's why so many use whatever social media they can manage, to try to be heard.  Even that is frowned upon.  How much erasure is too much, eh?

Our loved community members may also have intellectual disability, communication needs, epilepsy, pain conditions etc - but are so often left out of discussions on what really matters to them, what really improves their quality of life.  Very glad of the big survey and new research trying to put this right.  Their input matters.

Every autistic person is a person of full worth, fully needing their human rights, fully needing their voice to be heard....and their pain to be heard.

I hope, and pray, for myself and our lovely family.  For our friends and allies, our colleagues and acquaintances across the autistic communities and the wider neurodiversity, disability, and other marginalised communities.  For a life where we can put our proverbial arms around each other - and around others we love - and know love, peace & happiness at last.  

Until then, we keep hoping..and praying..and walking alongside one another through the fires of hell that some in society have placed in our paths.  

Perhaps one day society will stop lighting those fires, eh?


Sunday 22 January 2023

Ethics and Autism: Rights and Responsibilities within Applied Behaviour Analysis - Research by Ann Memmott PgC MA


An illustration of a child with their hair in a pony tail, wearing a blue dress.  Their wrist is being held by an adult hand.  Other adult hands point to them, etc. Illustration inspired by work of Meredith Ultra, from Wikimedia.  Creative Commons Licence.

Ethics and Autism:  Rights and Responsibilities within Applied Behaviour Analysis.  Ann Memmott, 2022. 

My name is Ann Memmott, and I am an independent researcher.  In 2022 I completed a piece of research for my Master's Degree Dissertation, through Sheffield Hallam University.  My grateful thanks to Dr Luke Beardon and many of the other Tutors and students, family and friends who guided and encouraged me.  My thanks also to my wise friend, Dr Dinah Murray, whose death in 2021 has left so many of us missing her presence, but glad of all she contributed to this field.  My thanks also to the University for giving me an award for this piece of work, which was of course properly evaluated by internal and external teams & given ethical consent.

This blog is a short and informal introduction to what I did, and what I found.  It is meant for the autistic community, since one of my goals is for all autism research to be for our communities, and co-owned by our communities. The blog does not include all of the material and is not meant to be a comprehensive summary of all of the findings.

The full paper will be published elsewhere in months ahead.  This summary of the work is copyright of the author, Ann Memmott.

I will start with a content warning.  This was a tough Dissertation.  Some of what I found was harrowing to read, and as harrowing to write about.  A little of the findings appears here.  But, it was important as a set of early findings.  It is my hope that when fully published, it will allow other researchers to explore more, and to ask good questions about the training that teams get, and what they end up believing about autistic children and young people.

Why did I study this?

The Applied Behaviour Analysis (ABA) industry claims to be a gold-standard approach to improving the lives of autistic individuals and their families. It uses reinforcement to make a child do, or not do, particular things.  I won't go into detail on what ABA is, here.  Any internet search for 'What is ABA' may give hundreds of ABA industry descriptions. may be useful as a starting point for a critical look at some of its approaches and claims.  

Logically,  a gold-standard approach would think deeply about ethics, and would make sure its staff were properly trained on ethics and Human Rights.  So, I wanted to do a test of easily-findable recent training materials and research from and for the ABA industry.  I had questions, when I started out.  Examples:

Did they explain to their teams what autism is? 
Would they have good comments on ethics, and on Human Rights? Would it look at whether e.g. children were harmed during ABA (adverse effects, etc)?  

Would it encourage lots of thinking about consent/assent from the autistic children, to make sure this was something they wanted - and would teams be trained to let them say or signal no, if they wanted it to stop?  

Did the ABA industry have a lot of openly autistic people writing and developing these materials?  Logically they would do, as this would help make sure the ABA was what the autistic people actually wanted.  It would also help to ensure good power-sharing.

Anyone who follows me on social media knows that I have concerns about ABA, having worked within and alongside the ABA industry for a few years.  So I was very careful to be open about that, and to make sure that I was reporting as accurately as possible.  I really do want other teams to challenge the Dissertation paper academically and see if they agree with it, based on the same sort of stuff I did.  That's what research is about.

I was expecting to find a reasonable amount of evidence that said yes, our ABA teams have the right training for all of this.  

University work uses a lot of different ways to look at stuff.  Mine used a "Critical integrative review".  In other words, I wanted to look at a variety of different materials.  Videos, ethics guidance papers, academic papers found in the top journal for ABA teams, and books aimed at teaching ABA teams about ABA.  I wanted to make it easy for other teams to do the same sort of research, so I carefully explained how I did each stage.  I also did a 'literature review', looking at a huge variety of different papers and materials that had already been written on these subjects.  I thought about whether the ABA industry was properly sharing power and control with autistic people.

I was clear that this was never going to find every single piece of writing and every single video, for my own study.  I wanted to see how easy it was for e.g. a new ABA team member to find the right up to date training, so I used simple internet searches, and picked the most popular and recent items to look at.  In the Journal, I picked a standard number of papers, to try to make it as fair as possible.  It took months to read and research these example more modern materials. The University team ensured students approached all of this in the best possible academic ways.

What did I find?

Well, most of it wasn't what I was expecting to find.  I really was expecting to find a reasonable amount of ethical discussion, and a reasonable amount of people now writing about human rights, etc.   The ABA field makes a lot of claims to be improving fast.  It was reasonable to expect evidence of this in recent journals, books etc.  

But, the results were in:

Very little sign of anyone asking autistic people or working with autistic people.

Very little evidence of anyone thinking about what autistic people actually want from ABA.

Very little evidence of people writing about the ethical treatment of autistic people, e.g. minimising harm, ensuring consent, checking for any harms afterwards etc.

Very little evidence of anyone even talking about Human Rights, apart from occasionally suggesting that autistic people had a human right to have ABA done to them.

I began looking at the journal papers that showed the experiments and research done on autistic children and young people.  I had picked e.g. the first bit of research after pages 300, 900, 1500 and 2100 in particular journal issues for a year. I wanted to make sure I was picking as fairly as possible.

The evidence in the papers pointed to routine use of punishment,  and use of coercive or restrictive practice to achieve results.  Often, the child's parents were also used as ABA enforcers at home. 

I won't give every example, here, but these might give an idea of what was discovered:

A paper which considered how to coerce three children into doing things.  A child’s distress, avoidance or noncompliance was described as problem behaviour on 156 occasions in the paper.  Autism is described as a disorder. There is no mention of consent/assent, nor ethical considerations or approval.   The target ‘problem behaviours’  included having difficulties with removing rubbish from the house, brushing teeth or stacking cups.  Stimming, (repetitive movement or sound) and which is a vital part of most autistic lives, is described as a problem behaviour.  The children were not permitted to escape during the testing.  If the children did not comply, the team turned away from them, thus using ‘planned ignoring’, and removed the materials the child wanted. One should note the concerns of many child specialists around the damage that may be done by this planned ignoring.  It may make it more difficult for a child to form secure attachments to those around them. 

Another paper analysed the toileting behaviour of ten autistic individuals aged between 2 and 13.  They had to sit on a toilet for a set amount of time, at set intervals.  The individuals were watched throughout this process, sometimes by two adult observers in the cubicle with them.   A successful urination or bowel movement resulted in access to a favourite item.  There is no mention of ethics, consent/assent, potential adverse effects from the intervention, potential long term harms or human rights.  Sensory or developmental reasons for difficulties with continence are not discussed.  The privacy of individuals was only discussed briefly in the context of a second observer in the cubicle. There was discussion of whether leaving an individual in soiled underwear would help make sure they didn't soil them again, but this was not considered within the frame of human rights and dignity.

Video materials barely considered most of the areas I was examining.  One, from a professional ABA team,  was full of swearing, which was unexpected, to say the least.

A table of results, discussed in the text

After the months of research, I summarised what I'd found.  A table of some of this is shown above.

Was there a good modern description of autism?  Almost always no, there was not.  How will teams know what autism is, if no-one tells them, one wonders.

Were teams given good ways to think about consent from the autistic child or young person?  Sometimes.  Of great concern, the wider look at literature showed that almost any attempt by the child to say no, or to escape, was regarded as one of the 'problem behaviours' to be stopped.  It was far from clear how almost any child could signal 'no' or 'stop' and have it respected.  But, parents were assured in their own consent forms that the child would be able to say no, and the team would stop.  Did they?  More research is needed on this.

Were teams encouraged to always check for harms from their research?  Sometimes, there was some consideration of this.  Only one item looked at this in any detail.  I could find almost none that followed up the children to find out if there were longer term harms. 

Was there a proper look at Human Rights?  Almost always no. 

Oddly, a lot of the materials around ethics considered things like the ABA teams not accepting a gift from a parent, or the ABA team members dressing in a business-like way.  There was very little that looked at the ethics of what was done to the children and young people.

I had a look at more recent materials, and general ABA materials, to find out if this was improving.  There was some evidence of an improving set of philosophies and a bit more working with autistic individuals.  But, as yet, not enough to make any real conclusions.  It appears that the ABA field is not yet sharing power in meaningful ways with the autistic communities, and it was far from clear that they were properly considering what we actually want.  There was a lot of mention of 'social validity', but mostly claiming that e.g. ABA was a medical necessity.  Little evidence was found to prove their claim of medical necessity.

Recommendations were for example that further research is carried out by other teams to duplicate the methods of this study, and to investigate each of the areas of work I'd looked at.  

I certainly needed a good cup of tea at the end of it all. 

My post-Dissertation comment:

Reflecting on the work, it is my view that the autistic communities need and deserve authentic, meaningful lives.  Lives in which we can be properly heard and properly respected.  Lives where any intervention done to us is done in ways we have asked for, with consent, and with the best of modern thinking from different fields.  It's not at all clear how the ABA field is encouraging its teams to think about any of this in clear and modern ways.

In my experience, life isn't about compliance.  It's about relationship, and one thing I noted during this work was how seldom any of the materials spoke about autistic children with any warmth and caring.  

There's another piece of research that very much needs doing. Where is human relationship, in all of this?

Thank you for reading.