Saturday 24 February 2024

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

Three illustrations of heads, with brains focusing on different aspects of information - creativity, love, facts & figures

 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. 

Monday 22 January 2024

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


A photograph of a padded cell

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.  

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.   

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.