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Reframing Autistic Family Life: Tips for Fostering Authentic Autistic Wellbeing at Home - Reframing Autism

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With a myriad of different sensory needs, love languages, executive functioning challenges, passions and ways to connect and self-regulate, a neurodiverse or entirely neurodivergent home can be a colourful environment! So how can we ensure our home remains a sanctuary of rest and recovery, where eve…

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Many autistic children sense the world very differently from how many parents and teachers expect.

Above, an example of how an autistic child may see a room with a toilet and hand basin in it. A tiled wall, a patterned vinyl floor surface. Would you put your feet on that floor? Could you work out what it was? Could you even reliably find the toilet?

Now let's add in the 'smellscape.' Perhaps air fresheners. Toilet cleaners. Hand soaps. Wee. Poo.

Then, let's add in the soundscape. Noisy pipes. The jet-engine-like flush. The deafening smash of wee or poo hitting the water, and the terrifying prospect of freezing water splashing up.

Let's then add in the elements of freezing cold toilet seat, ice cold taps or boiling hot taps, the ice-cold metal of the toilet handle, the taps. The searing rough surface of the hand towel, or the further deafening roar of a hand drying unit perhaps. Then, of course, the pain of dragging clothing down in order to use the toilet....coping with the complexities of the toilet paper and what to do with it, where to put it. Dragging clothing back up again, like someone using sandpaper against your skin.

Toileting can be the most terrifying experience imaginable for a child whose experience of the world is turned up to 'max.'

For others, each noise and smell, texture and feeling is a fascination and a puzzle which needs exploring, and they may seek out those experiences over and over, trying desperately to make sense of them.

Some may experience difficulties with balance and co-ordination, or with internal signaling to say they need a loo until it's too late. Or with the ability to point or signal that they want the loo.

To their credit, many autistic children endure all of this and actually do use the loo, politely, over and over again, and continue to do so for life. No-one questions whether it's hell, or whether we could design such spaces in ways less exhausting to use. So, let us bear in mind that most autistic children do manage to cope with this ridiculous scenario.

But how easy it is for some adults to misunderstand why an autistic child may avoid using a toilet. Some children are so desperately afraid of these spaces that they will only wee or poo in a quiet, safe corner. Often on soft material that disguises the noise.

Yet some adults still say, "They're just animals-they just don't care-this is deliberate challenging behaviour-we must find ways to force them..." We even have playwrights writing a horrible play which portrays autistic children as animals, using this theme and dehumanising puppets.

Oh my. No.

Always, always presume competence. Presume that the child wants to learn. Always, always show respect and caring. Take good advice from autistic advisers and our allies, who are experienced and expert. Many are parents, many have vivid memories of their own of the challenges of such spaces.

If you are designing such a space, take good advice on that design. Think about minimising the pain and the disorientation.

Instead of assuming that, since it's OK for you, it must be OK for an autistic child...think differently. Because the solution isn't the child being forced into that hellish toileting space. Instead, we should be working with the child to find answers to each part of their toileting nightmare. Thinking about making the visual experience understandable. Minimising the smells. Minimising the noise. Using soft towels, soft paper. Using clothing that doesn't cause terrible pain when it is pulled up or down.

Work together. Learn from one another.

Thank you for listening.

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Autistic Children and Toileting: Misunderstanding the Difficulties

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Toileting can be the most terrifying experience imaginable for an autistic child whose experience of the world is already turned up to "max."

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DSM-5 Criteria V Strengths Based Criteria

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DSM-5 Criteria V Strengths Based Criteria

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DSM-5 Criteria V Strengths Based Criteria.jpeg

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A Guide to Neurodiversity in the Early Years

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A Guide to Neurodiversity in the Early Years

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Here is the collection of all my posts that are currently available.
Click on a post to see the full info-graphic!

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How do we support Autistic children with complex needs in the early years?

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How do we support Autistic children with complex needs in the early years?

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How do we support children with autism and complex needs in the early years? - Reachout ASC

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Are you an Early Years teacher or teaching assistant? Do you have children in your class that you are struggling to engage or understand their needs? Do you think they might be autistic or have other SEND needs that you are not qualified to diagnose?

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Neuroqueer - some basic terms & definitions

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Neuroqueer - some basic terms & definitions

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NEUROQUEER * THE WRITINGS OF DR. NICK WALKER

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Nick Walker, PhD
I wrote "Neurodiversity: Some Basic Terms & Definitions" back in 2014. So far, of all the pieces I've written, this is the one that's been most frequently cited in other people's work (academic and otherwise). The definitive, citable version of this essay, along with supplementary comments, can be found in my book When referencing my work, please remember that my pronouns are she/her. Neuroqueer Heresies
New paradigms often require a bit of new language, and this is certainly the case with the neurodiversity paradigm. I see many people - scholars, journalists, bloggers, internet commenters, and even people who identify as neurodiversity activists - get confused about the terminology around neurodiversity. Their misunderstanding and incorrect usage of certain terms often results in poor and clumsy communication of their message, and propagation of further confusion (including other confused people imitating their errors). At the very least, incorrect use of terminology can make a writer or speaker appear ignorant, or an unreliable source of information, in the eyes of those who do understand the meanings of the terms.

For those of us who seek to propagate and build upon the neurodiversity paradigm - especially those of us who are producing writing on neurodiversity - it's vital that we maintain some basic clarity and consistency of language, for the sake of effective communication among ourselves and with our broader audiences. Clarity of language supports clarity of understanding.

And, as I increasingly find myself in the position of reviewing other people's writing on neurodiversity - grading student papers, reviewing book submissions or submissions to journals, consulting on various projects, or even just deciding which pieces of writing I'm willing to recommend to people - I'm getting tired of running into the same basic errors over and over.

So, as a public service, I'm posting this list of a few key neurodiversity-related terms, their meanings and proper usage, and the ways in which I most commonly see them mis used.

NEURODIVERSITY

What It Means:

Neurodiversity is the diversity of human minds, the infinite variation in neurocognitive functioning within our species.

What It Doesn't Mean:

Neurodiversity is a biological fact. It's not a perspective, an approach, a belief, a political position, or a paradigm. That's the neurodiversity paradigm (see below), not neurodiversity itself.

Neurodiversity is not a political or social activist movement. That's the Neurodiversity Movement (see below), not neurodiversity itself.

Neurodiversity is not a trait that any individual possesses or can possess. When an individual or group of individuals diverges from the dominant societal standards of "normal" neurocognitive functioning, they don't "have neurodiversity," they're neurodivergent (see below).
"Our school offers multiple learning strategies to accommodate the neurodiversity of our student body."
Example of Correct Usage:

Examples of Incorrect Usage:

"Neurodiversity claims that..."
This writer is actually trying to talk about either the neurodiversity paradigm or the Neurodiversity Movement. Neurodiversity, as a biological characteristic of the species, can't "claim" anything, any more than variations in human skin pigmentation can "claim" something.

"Neurodiversity is a load of nonsense."
Really? So human brains and minds don't differ from one another? There's an awful lot of scientific evidence that shows quite plainly that there's considerable variation among human brains. And if we all thought alike, the world would be a very different place indeed. The person who wrote this sentence was probably trying to object to the neurodiversity paradigm and/or the positions of the Neurodiversity Movement, and has ended up sounding rather silly as a result of failing to distinguish between these things and the phenomenon of neurodiversity itself.

"My neurodiversity makes it hard for me to cope with school."
The correct word here would be neurodivergence, rather than neurodiversity. An individual, by definition, cannot be "diverse" or "have diversity."

"Autism and dyslexia are forms of neurodiversity."
Nope. Nope nope nope. There's no such thing as a "form of neurodiversity." Autism and dyslexia are forms of neurodivergence.

NEURODIVERSITY PARADIGM

What It Means:

The neurodiversity paradigm is a specific perspective on neurodiversity - a perspective or approach that boils down to these fundamental principles:

1.) Neurodiversity is a natural and valuable form of human diversity.

2.) The idea that there is one "normal" or "healthy" type of brain or mind, or one "right" style of neurocognitive functioning, is a culturally constructed fiction, no more valid (and no more conducive to a healthy society or to the overall well-being of humanity) than the idea that there is one "normal" or "right" ethnicity, gender, or culture.

3.) The social dynamics that manifest in regard to neurodiversity are similar to the social dynamics that manifest in regard to other forms of human diversity (e.g., diversity of ethnicity, gender, or culture). These dynamics include the dynamics of social power inequalities, and also the dynamics by which diversity, when embraced, acts as a source of creative potential.

What It Doesn't Mean:

The neurodiversity paradigm provides a philosophical foundation for the activism of the Neurodiversity Movement, but the two aren't the same. For instance, there are people working on developing inclusive education strategies based on the neurodiversity paradigm, who don't identify as social justice activists or as part of the Neurodiversity Movement.
"Those who have embraced the neurodiversity paradigm, and who truly understand it, do not use pathologizing terms like 'disorder' to describe neurocognitive variants like autism."
Example of Correct Usage:

NEURODIVERSITY MOVEMENT

What It Means:

The Neurodiversity Movement is a social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent.

What It Doesn't Mean:

The Neurodiversity Movement is not a single group or organization, is not run by any single group or organization, and has no leader. Like most civil rights movements, the Neurodiversity Movement is made up of a great many individuals, some of them organized into groups of one sort or another. These individuals and groups are quite diverse in their viewpoints, goals, concerns, political positions, affiliations, methods of activism, and interpretations of the neurodiversity paradigm.

The Neurodiversity Movement began within the Autism Rights Movement, and there is still a great deal of overlap between the two movements. But the Neurodiversity Movement and the Autism Rights Movement are not one and the same. The most significant distinction between the two is that the Neurodiversity Movement seeks to be inclusive of all neurominorities, not just Autistics. Also, there some who advocate for the rights of Autistics but who cannot rightly be considered part of the Neurodiversity Movement because they still consider autism to be a medical pathology or "disorder," a view at odds with the neurodiversity paradigm.

NEURODIVERGENT and NEURODIVERGENCE

What It Means:

Neurodivergent, sometimes abbreviated as ND, means having a mind that functions in ways which diverge significantly from the dominant societal standards of "normal."

Neurodivergent is quite a broad term. Neurodivergence (the state of being neurodivergent) can be largely or entirely genetic and innate, or it can be largely or entirely produced by brain-altering experience, or some combination of the two. Autism and dyslexia are examples of innate forms of neurodivergence, while alterations in brain functioning caused by such things as trauma, long-term meditation practice, or heavy usage of psychedelic drugs are examples of forms of neurodivergence produced through experience.

A person whose neurocognitive functioning diverges from dominant societal norms in multiple ways - for instance, a person who is Autistic, dyslexic, and epileptic - can be described as multiply neurodivergent.

Some forms of innate or largely innate neurodivergence, like autism, are intrinsic and pervasive factors in an individual's psyche, personality, and fundamental way of relating to the world. The neurodiversity paradigm rejects the pathologizing of such forms of neurodivergence, and the Neurodiversity Movement opposes attempts to get rid of them.

Other forms of neurodivergence, like epilepsy or the effects of traumatic brain injuries, could be removed from an individual without erasing fundamental aspects of the individual's selfhood, and in many cases the individual would be happy to be rid of such forms of neurodivergence. The neurodiversity paradigm does not reject the pathologizing of these forms of neurodivergence, and the Neurodiversity Movement does not object to consensual attempts to cure them (but still most definitely objects to discrimination against people who have them).

Thus, neurodivergence is not intrinsically positive or negative, desirable or undesirable - it all depends on what sort of neurodivergence one is talking about.

The terms neurodivergent and neurodivergence were coined in the year 2000 by Kassiane Asasumasu, a multiply neurodivergent neurodiversity activist.

What It Doesn't Mean:

Neurodivergent is not a synonym for autistic. There are countless possible ways to be neurodivergent, and being autistic is only one of those ways. There are myriad ways of being neurodivergent that have no resemblance or connection to autism whatsoever. Never, ever use neurodivergent as a euphemism for autistic. If you mean that someone is autistic, say they're autistic. It's not a dirty word.
"Our school aims to be inclusive of students who are Autistic, dyslexic, or otherwise neurodivergent, though there are some types of neurodivergence that we're still seeking ways to accommodate." "This group is for people who identify as both queer and ND (neurodivergent)."
Examples of Correct Usage:

NEUROTYPICAL, or NT

What It Means:

Neurotypical, often abbreviated as NT, means having a style of neurocognitive functioning that falls within the dominant societal standards of "normal."

Neurotypical can be used as either an adjective ("He's neurotypical") or a noun ("He's a neurotypical").

Neurotypical is the opposite of neurodivergent. Neurotypicality is the way-of-being from which neurodivergent people diverge. Neurotypical bears the same sort of relationship to neurodivergent that straight bears to queer.

What It Doesn't Mean:

Neurotypical is not synonymous with non-autistic.

Neurotypical is the opposite of neurodivergent, not the opposite of autistic. Autism is only one of many forms of neurodivergence, so there are many, many people who are neither neurotypical nor autistic. Using neurotypical to mean non-autistic is like using "white" to mean "not black."

Also, neurotypical is not a derogatory word, and has no intrinsic negative connotation. Of course, sometimes people use the word in the context of criticizing the behavior of neurotypicals, but that doesn't make it an intrinsically negative word. A lot of people criticize the behavior of men, too, but that doesn't make "man" an intrinsically derogatory word.
"If the primary language of the society in which you were born is well-suited to the purpose of describing your sensory experiences, your needs, and your thought processes, you may have neurotypical privilege." "My sister is NT, but after growing up with an Autistic father and brother, she's quite at ease with other people's neurodivergence."
Examples of Correct Usage:

Example of Incorrect Usage:

"Is your daughter Autistic or neurotypical?"
This isn't a well-worded question because there are other possibilities. The daughter in question might be non-autistic, but might also not qualify as neurotypical - she might, for instance, be dyslexic or have Down Syndrome.

NEUROMINORITY

What It Means:

A neurominority is a population of neurodivergent people about whom all of the following are true:

1.) They all share a similar form of neurodivergence.

2.) The form of neurodivergence they share is one of those forms that is largely innate and that is inseparable from who they are, constituting an intrinsic and pervasive factor in their psyches, personalities, and fundamental ways of relating to the world.

3.) The form of neurodivergence they share is one to which the neurotypical majority tends to respond with some degree of prejudice, misunderstanding, discrimination, and/or oppression (generally facilitated by classifying that form of neurodivergence as a medical pathology).

Examples of neurominority groups include Autistic people, dyslexic people, and people with Down Syndrome.

It's also possible to be neurodivergent without being a member of a neurominority group. Examples include people with acquired traumatic brain injuries, and people who have altered their own neurocognitive functioning through extensive use of psychedelic drugs.

The word neurominority can function as either a noun (as in, "Autistics are a neurominority") or an adjective (as in, "Autistics are a neurominority group").

NEURODIVERSE

What It Means:

A group of people is neurodiverse if one or more members of the group differ substantially from other members, in terms of their neurocognitive functioning.

Or, to phrase it another way, a neurodiverse group is a group in which multiple neurocognitive styles are represented.

Thus, a family, the faculty or student body of a school, the population of a town, or the cast of characters of a TV show would be neurodiverse if some members had different neurocognitive styles from other members - for instance, if some members were neurotypical while others were Autistic.

What It Doesn't Mean:

Many people mistakenly use neurodiverse where the correct word would be neurodivergent.

Of all the errors that people make in writing and speaking about neurodiversity, the misuse of neurodiverse to mean neurodivergent is by far the most common.

There is no such thing as a "neurodiverse individual." The correct term is " neurodivergent individual." An individual can diverge, but an individual cannot be diverse.

Neurodiverse does not mean "non-neurotypical." The opposite of neurotypical is neurodivergent, not neurodiverse. Neurodiverse cannot be used to mean "non-neurotypical," because neurotypical people, like all other human beings, are part of the spectrum of human neurodiversity. The opposite of neurodiverse would be neurohomogenous (meaning "composed of people who are all neurocognitively similar to one another").

To refer to neurominority groups or neurodivergent individuals as "neurodiverse" is incorrect grammatically, because diverse doesn't mean different from the majority, it means made up of multiple different types. So an individual can never be diverse, by definition. And a group where everyone is neurodivergent in more or less the same way (e.g., a group composed entirely of Autistic people) wouldn't be "neurodiverse," either.

The only appropriate and grammatically correct use of the term neurodiverse is when it's used to describe a group of people whose members differ neurocognitively from each other. In other words, a classroom where everyone is Autistic is not neurodiverse, but a classroom where some students are neurotypical and some aren't is neurodiverse.

Humanity is neurodiverse, just as humanity is racially, ethnically, and culturally diverse. By definition, no human being falls outside of the spectrum of human neurodiversity, just as no human being falls outside of the spectrum of human racial, ethnic, and cultural diversity.

In addition to being incorrect, it's also oppressive to misuse the word "diverse" to mean "minority," because this misuse of "diverse" is based in the intrinsically oppressive assumption that there's a default "normal" way of being and that "diversity" is about adding non-normative individuals into the "normal" default environment. This is the assumption that allows tokenization to pass for "diversity" in corporations, schools, and other social institutions.

We can see this same oppressive misuse of the word "diverse" in the discourse of racists who use the term "diverse" as a euphemism for "non-white." This usage seeks to twist the definition of the word "diverse" to mean "not part of the privileged in-group." Again, that's not what the word means, and misusing it in that particular way serves to reinforce a racist mindset in which white people are seen as intrinsically separate from the rest of humanity, rather than as just another part of the spectrum of human ethnic diversity.

It is the same with the misuse of the term neurodiverse to mean "non-neurotypical." To describe an Autistic, dyslexic, or otherwise neurodivergent person as a "neurodiverse individual" is not merely an incorrect usage of the word "diverse"--it also serves to reinforce an ableist mindset in which neurotypical people are seen as intrinsically separate from the rest of humanity, rather than as just another part of the spectrum of human neurodiversity.

In summary, then: misusing the term neurodiverse to mean neurodivergent (i.e., non-neurotypical) is not only plain old bad grammar, it also subtly reinforces ableism and undercuts the fundamental tenets of the neurodiversity paradigm. I hope this explanation will help people to avoid this particular error in the future--and, when possible, to correct such misuse where they encounter it.
"We humans are a neurodiverse species." "We employ a wide variety of creative teaching strategies to accommodate the many different learning styles represented in our highly neurodiverse student body." "My neurodiverse family includes three neurotypicals, two Autistics, and one person who's both ADHD and dyslexic." "I think every single member of their board of directors is neurotypical. An organization that supposedly serves the needs of neurominority children should have a more neurodiverse board."
Examples of Correct Usage:

Examples of Incorrect Usage:

"This group welcomes Autistics and other neurodiverse people."
It's nice to be welcomed, but there's no such thing as a "neurodiverse person." the correct phrase here would be "Autistics and other neurodivergent people."

"This group is open to both neurotypicals and the neurodiverse."
No, no, no. "The neurodiverse?" Seriously? What does that even mean? The spectrum of neurodiversity encompasses the entire human species, so one can't label any subset of the human species as "the neurodiverse." And neurotypicals are part of the spectrum of human neurodiversity, so it makes no sense to say "neurotypicals and the neurodiverse," as if those were two separate things. The correct way to say this would be, "This group is open to both neurotypicals and the neurodivergent."

I hope this list of definitions will help to foster greater clarity and understanding, and more accurate writing, when it comes to the terminology around neurodiversity. I encourage readers to share, cite, or quote from this piece, anywhere it might be useful. If you're writing up submission guidelines for neurodiversity-related writings, for a journal, anthology, conference, or other project, feel free to include a link to this post in your guidelines. If you encounter a journalist who's doing a piece on a neurodiversity-related topic, or a group of college students who are writing about neurodiversity, please share this piece with them. And please feel free to use this piece as a resource in any situation in which there's confusion about what any of these terms mean.

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NEURODIVERSITY: SOME BASIC TERMS & DEFINITIONS * NEUROQUEER

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Nick Walker, PhD I wrote "Neurodiversity: Some Basic Terms & Definitions" back in 2014. So far, of all the pieces I've written, this is the one that's been most frequently cited in other people's work (academic and otherwise).

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Exploring neurodiversity and counselling via a walk in the woods

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Neurodivergent Play, Connection and Culture

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Neuroteachers - Inclusion for neurodiversity

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Neuroteachers Training Training - for educational settings Get in Touch At Neuroteachers, we understand how time and resource poor schools, colleges and nurseries are.You need simple, practical solutions which you can learn today and put into practice tomorrow. Let us show you how you can gain confi…

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Jodie Smitten - autism specialist for bespoke training and courses

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Jodie Smitten - autism specialist for bespoke training and courses

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Supporting Multimodal Communication for Autistic Children

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Supporting Multimodal Communication for Autistic Children

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T﻿his course will provide professionals (specifically Speech and Language Therapists) an overview of multi-modal communication and AAC. We will focus on the communication environment and how to create affirming, inspiring communication environments for Autistic children, young people, and adults. We will look at the challenges and barriers in achieving environments that presume competence and how best to work with others.

T﻿opics

Factors that make communication difficult for Autistic people e.g., fatigue, sensory overload, motor disinhibition

F﻿orms of multi-modal communication

T﻿erminology and language preferences

A﻿AC myths

A﻿AC research

I﻿ntroduction to AAC assessment and implementation

K﻿ey considerations for Gestalt Language Processors (GLPs)

T﻿here will be a recording available so don't worry if you can't make it to the live event, and you will receive the presentation slides.

Y﻿our trainers

Elaine McGreevy (she/her) has worked as a Speech and Language Therapist for 26 years, and has been a Lead Clinician since 2001. Elaine has been involved in setting up and developing Speech and Language Therapy services for Autistic children and young people. Elaine offers pro-neurodiversity Speech and Language Therapy through non-behavioural based, empathic approaches. Elaine wants to contribute to making a change in how society accepts and supports Neurodivergent people, especially Autistic children and young people.

Emily Lees (she/her) is a proudly Autistic Speech and Language Therapist who supports Autistic children, young people, and adults. Emily does not provide behaviourist social skill interventions which are based on outdated research claiming that Autistic children have social impairments. Through her lived experience, Emily campaigns for radical changes in therapy practices that encourage Autistic people to embrace their stimming, interests, and authentic communication.
Twitter: @DivergentSLT W﻿ebsite: www.divergentperspectives.co.uk

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supporting multi-modal communication: for autistic children & young people

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supporting multi-modal communication: for autistic children & young people tickets

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Supporting multi-modal communication: for Autistic children & young people

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T﻿his course will provide professionals (specifically Speech and Language Therapists) an overview of multi-modal communication and AAC. We will focus on the communication environment and how to create affirming, inspiring communication environments for Autistic children, young people, and adults. We will look at the challenges and barriers in achieving environments that presume competence and how best to work with others.

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A Neurodivergent Approach to Autistic Social Communication

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A Neurodivergent Approach to Autistic Social Communication

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Rachel's talk will be on their autistic language hypothesis which suggests autistic people communicate differently compared to non-autistic people, but effectively with other autistic people. A new alternative approach to conceptualising autistic social communication through a neurodivergent lens as different not disordered.

Rachel is an Autistic researcher and independent consultant. They have been working in the field of autism research and advocacy since 2016. Rachel has a Master's degree in autism studies and recently began a PhD in intellectual and developmental disabilities. They have an academic interest in autistic communication, specifically social communication. Rachel is non-binary (Them/Them) and is a proud member of the LGBTQIA+ community.

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a neurodivergent approach to autistic social communication |  rachel cullen

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a neurodivergent approach to autistic social communication |  rachel cullen tickets

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A Neurodivergent Approach to Autistic Social Communication | Rachel Cullen

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Eventbrite - Autistic Parents UK presents A Neurodivergent Approach to Autistic Social Communication | Rachel Cullen - Wednesday, 28 June 2023 - Find event and ticket information.

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So why are behaviour points/apps a problem?

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So why are behaviour points/apps a problem?

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'The Psychology of Money' by @morganhousel was one of my favourite reads of the last year.

Here are my highlights from a recent podcast interview, covering money, writing, Twitter, reading, risk, psychological moonshots, + more.

🧵👇...

1/ Health + money matter like nothing else.

"If you don't have an interest in health and money, it doesn't matter because they have an interest in you.

Those two fields are going to impact everybody."

2/ Writing helps the writer.

"The person who benefits the most from writing is the author."

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Thread by @garethkthomas on Thread Reader App

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@garethkthomas: So why are behaviour points/apps a problem? Shouldn't we, as parents, be involved in upholding behaviour standards at school? Shouldn't we be celebrating the wins with our kids? A few thoughts... 🧵 T......

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Masking -  the veneer of sociability 1080p

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Written by Jodie Wilde
Therefore, when someone fails to meet the 'norm' they are viewed as having a 'deficit' and the focus is on 'fixing' this through medical or therapeutic interventions.

If this isn't possible, then exclusion is an unfortunate - but inevitable - outcome of the person's 'deficit'. By locating dis/ability within the person, the disabling impact of environmental, structural, and social barriers can be ignored, or at least significantly downplayed. When dis/ability is viewed through this lens, the ableist assumptions embedded in education policies and practices remain hidden. If we want to achieve genuine inclusion, these assumptions need to be reviewed and challenged.

As a teacher, I know how difficult it is to challenge the status quo. (As a neurodivergent teacher, I challenge it anyway.) As the mother of two Autistic/ADHD children, I am painfully aware of the damaging impact the current system can have.

It is essential that teachers take a stand, no matter how difficult it may seem. The more teachers take up the challenge, the easier it will be to push for substantial change. However, before teachers can challenge the status quo, they need to examine their own assumptions about dis/ability and inclusion. Below are some questions to help guide this process:

1. How do I view dis/ability?

Have you ever thought/said any of the following?

"I feel so sorry for them, it must be so hard."

"If they don't learn how to play/talk/do things normally, they'll be left out/bullied."

There is a very good chance the answer is 'yes'. If so, consider asking yourself:

What makes having a dis/abled child hard? Is it the dis/ability itself, or the lack of support families have?

Why is it the dis/abled child's responsibility to fit in if they don't want to be bullied? Don't we teach non-disabled children to play/communicate/do things the way that dis/abled children do them so that they can interact with them?

2. Where does my information about dis/ability come from?

Like the general public, teachers get most of their information about dis/ability from the media, where dis/ability is represented as a personal deficit and a tragedy. Information about specific dis/abilities is often delivered to teachers through professional development. However, these are rarely designed or presented by people with dis/abilities. Therefore, it is predominantly deficit-based and focuses on interventions to 'fix' the individual.

Autistic students, in particular, are often the target of interventions that seek to eliminate or reduce external signs of autism - for example 'stimming' behaviours (rocking, flapping, jumping) as it is seen as non-functional and distracting. However, Autistic adults see stimming as a way to regulate their emotions and often use it to reduce anxiety and stress caused by sensory input.

When Autistic children are constantly reprimanded for their stimming behaviours, it denies them this crucial mechanism for self-regulation.

In addition, very few teachers consult with students when choosing accommodations, often implementing generic strategies. For example, assumptions that Autistic people need routine lead to the use of strict visual schedules. However, this ignores the fact that, 1) many Autistic people also have ADHD, and therefore need flexibility and novelty, and 2) Autistic people prefer predictability and autonomy. This is not the same as following the demands of an externally imposed schedule or routine.

The key point is that teachers should get their information about dis/ability from dis/abled people.

3. What message am I sending about dis/ability?

There are endless examples of school practices that communicate ableist ideals. For example, do you insist that students demonstrate their attention by looking at the teacher, sitting straight, not moving etc? You may even have to follow a specific school policy - such as "super six" or "whole body listening". These policies are fundamentally ableist. Even if you don't apply them to students with dis/ability, the message you are sending - loud and clear - is that the "right" way to listen is by sitting still/straight and looking at the teacher. Every child knows that if you don't do it this way it's because there's something "wrong" with you.

Another way ableist ideals are communicated is through approaches to inclusion. For example, common accommodations for Autistic students are visual schedules, extra breaks, and assistive technology. Although these strategies are important - and even essential - they are not inclusive unless they are available to all students. When implemented as individualised add-ons for specific students they merely re-create segregation within the classroom and reinforce the ableist assumption that the individual is the 'problem'.

4. Do I challenge stereotypes, prejudice and discrimination?

Do any of the comments below sound familiar?

"I'm not going to change my whole classroom for one kid".

"It doesn't matter what you teach them, they'll never learn anything".

"They need to learn to be normal".

"They just want their own way".

"They need to follow the rules like everyone else".

I've heard variations on these comments (and much worse) multiple times over the past six years. For a long time, I was afraid to speak up. Especially when these comments were made by senior teachers and admin staff. Finding the best way to respond to these comments isn't easy, but it is important to challenge these attitudes whenever possible. The following are a few examples of responses that can help bring attention to the inappropriateness of these comments without alienating people too much:

"What makes you think that?"

"I'm not sure there is a way to be 'normal'."

"Is there a reason why we can't do it that way?"

"Maybe we should look at changing the rules so that they're more appropriate for everyone".

The above questions are a good starting point for teachers to reflect on their assumptions and their practices. However teachers should also reflect on their assumptions about race, gender, and sexuality as well as dis/ability.

This reflection process can be confronting, especially when it forces you to recognise your own biases and privilege, but it is a vital first step if we want to achieve genuine inclusion.

--
Jodie Wilde is the founder of Accomplish Inclusion and an experienced early childhood and primary teacher with a Masters in Inclusive Education. She is currently completing a Master of Philosophy, researching how schools can foster positive Autistic identity to improve the mental health and wellbeing of Autistic students. Jodie has extensive lived-experience of neurodivergence. Her own journey to inclusion began when her daughter received an ADHD diagnosis. Herself and her son were subsequently diagnosed. Both her children were also formally identified as Autistic and Jodie is currently pursuing her own Autism diagnosis. Her personal experience of how barriers created by society can impact the lives of neurodivergent individuals informs her work as an inclusive education advocate, consultant and trainer.

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Challenging Ableism in Education: Tips for teachers on how to be an inclusive educator - Reframing Autism

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Written by Jodie Wilde Ableism is the belief that the 'norm' is for people to be able-bodied and able-minded. Therefore, when someone fails to meet the 'norm' they are viewed as having a 'deficit' and the focus is on 'fixing' this through medical or therapeutic interventions.

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It drove my mother crazy when I went barefoot as a kid. Still does - because I'm in stockinged feet in the fall and winter and barefoot the rest of the time!

I can't stand the confinement of shoes. And I've long been an advocate for children to go without them. As I wrote in the very first edition of my textbook:

"Children have been moving in sneakers for physical activity for so long we seem to have forgotten that feet do have sentient qualities. They can be used to grip the floor for strength and balance, and their different parts (toes, ball, sole, heel) can be more easily felt and used when bare. Furthermore, there is evidence indicating that going barefoot strengthens feet and improves body alignment. Young children feel a natural affinity for the ground that can be enhanced by removing all the barriers between it and the feet."

Nothing really startling there. But you might be surprised to learn that there's scientific evidence that barefooted is better. Among other things, it's important to development of the nervous system and to optimal brain development as well! Turns out the feet are the most nerve-rich parts of the human body, which means they contribute to the building of neurological pathways in the brain. Covering them in shoes, therefore, means we're eliminating all kinds of opportunities for children's brains to grow new neural connections.

Of course, it's worry that keeps parents and teachers from setting children's feet free. One common concern is that kids will contract germs by going barefoot. (That's my mother's issue.) But our skin is designed to keep pathogens out. We're much more likely to become ill from touching something with our hands, which are in contact with so many things during the course of a day. I'd hate to think we'd keep kids in gloves all day to prevent germs!

There's also concern about injury. But being barefoot actually toughens up the bottom of the feet, so unless children are walking through a construction site full of nails, the likelihood that they'll injure themselves is slim.

The truth is, many podiatrists contend that shoes can be much more harmful to little feet than nakedness can. Feet should be allowed to develop naturally, not conform to the shape of a shoe. Also, shoes can often constrict movement of the feet, and can negatively impact walking, balance, sensory development, and proprioception (the understanding of our body's orientation in the space around us).

If you're worried about the potential chaos of many children shedding shoes and socks at the same time, you can establish and practice routines for removing and retrieving footwear. Socks should be put inside shoes and shoes lined up against a wall or placed in each child's cubby. And should you have children who are reluctant to remove shoes and socks, you can encourage them with concepts like "barefoot time" or, for toddlers, "tippy-toe time." They'll also become more enthusiastic about bare feet if you remove your shoes and socks as well.

If you still face reluctance (and even if you don't!), offer sensory experiences like those shown in a couple of fabulous videos I've shared on Facebook ( here and here). In them, children are walking barefoot through plastic bins filled with many different textures, including water, soapy water, sand, leaves, and more. It would be the rare child who'd pass up temptations like these!

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There's now scientific evidence that being barefoot is important to optimal brain and sensory development!

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In December 2021, Dr. Jenn M. Jackson, assistant professor at Syracuse University, wrote a Twitter thread reflecting on her initial encounters with Brené Brown's work around "courage" and "vulnerability." Dr Jackson's thread explains:

"Reflecting this morning on courage and vulnerability after encountering Brene Brown's work for the first time this week."

"I really think we have to talk about race and gender every single time we talk about doing courageous things."

"The other side of courage is considering the stakes. What are the stakes of being Black in public? What are the risks of Black courage?... When I talk to young Black people about courage, they tell me that they know that the costs are high... Courage to speak up against racism, courage to protest unjust killings of Black folx, courage to fight. The costs are too high for some."

As Dr. Carey Yazeed's follow-up article (and video), The Dangers of Courage Culture and Why Brene Brown Isn't For Black Folk elaborates, white and middle class writers like Brown can only speak to people that have the same lived experiences. They cannot speak to or speak for people who do not relate to this lived experience. The reality is often that for people with "protected" or privileged identities, such as Brown, being courageous comes with less risks.

In Wong et al's (2022) article Silent or silenced? Minority ethnic students and the battle against racism, the authors explore the experiences of minority ethnic students in higher education in the United Kingdom, in particular their approaches to dealing with racism and coping strategies. They explained that when the students in the study were asked, many said that reporting incidents of racism would be their last resort. This is because of:

fears of retribution,

the difficulty in proving or validating "less explicit" forms of racism, and

the lack of trust and confidence from students in racial reporting, including the university's grievance process.

Such findings highlight how diversity, equity, and inclusion (DEI) work in educational institutions must involve creating environments where "honest" conversations are safe, and where it's acknowledged that being courageous can mean different things for different people and comes with different risks.
The International Education Context:
In 2021, CIS, the ISS Diversity Collaborative, and George Mason University conducted research into diversity in international school teaching staff and leadership.

They found that:

84 percent of heads of school and 74 percent of those on leadership teams were white.

75 percent of heads of schools were male.

Only 11 percent of heads of schools were from non-Western countries.

International schools have been, and still are white, western, and male spaces, at least that is where much of the power lies. Having identity markers different from the dominant group comes with increased risks, whether they seem visible or not, and we cannot fully understand the true lived experiences of all of the staff in our schools.However, as Audre Lorde writes, "You do not have to be me in order for us to fight alongside each other."

The book, Becoming a Totally Inclusive School: A Guide for Teachers and School Leaders, explains that equitable and just schools need everyone in the school community to be advocates. The Seven Is of Total Inclusivity's Advocacy Stance outlines the key characteristics that educators need to help sustain DEI-focused interventions and initiatives.

These Seven Is are:

1. Intentional: Advocates engage with the intention to learn, reflect, grow, and take informed actions.

2. Invitational: Advocates continually seek to include and value diverse voices and perspectives through creating spaces that foster psychological safety. Advocates recognize that failures and mistakes are a norm and invite imperfection to help drive and accelerate progress.

3. Inquiry-driven: Advocates recognize that Totally Inclusive inquiry involves examining privilege, biases, and understanding gaps and diverse ways of knowing. This is done with the goal of co-constructing new ways of knowing and being.

4. Interactive: Advocates recognize that learning is a social activity that gains meaning through transferring knowledge into practice.

5. Intrepid: Advocates face inequities with fortitude and endurance, and recognize that taking courageous actions can require discomfort, risk management, and fearlessness.

6. Impactful: Advocates acknowledge and take responsibility for past actions that have caused harm in order to promote healing and growth. They aspire to take actions that result in a Totally Inclusive impact.

7. Interconnected: Advocates recognize that there are multiple entry points and tactics for learning, engagement, advocacy, and action. They embrace complexity and acknowledge that dismantling inequities requires interconnected and intersectional approaches at both individual and institutional levels.

What Does It Mean for Advocates To Be Intrepid?
As the landscape of international schools changes to become more inclusive, polarizing beliefs and backlash against DEI-related work has also grown. In relation to the critique on what it means to be "courageous," it is crucial to recognize the vulnerabilities that different educators face when engaging in advocacy and action.

On one side, heads of schools and senior leaders are both powerful, yet also vulnerable to the wishes of governors. Jane Larsson, Executive Director of the Council of International Schools recently posted, "During the last few months, 3 caring, effective school leaders were fired with no notice & asked to sign non-disclosure agreements. Each had recently introduced dialogue on gender identity. How many more has this happened to?"

Given the statistics shared earlier in this article about the ethnicity, gender, and cultural heritage that reigns supremely at leadership levels, we must recognize the power that certain privileged demographics have. How are leaders and governors being intrepid and calculating risk? Are they leveraging their power to advocate for diversity, equity, inclusion, and justice?

While we encourage advocates to face inequities with fortitude and endurance, we also acknowledge that on the other end people who hold historically marginalized identities, and who do not have the same power and privilege, sit in discomfort and engage in risk management regularly. Simply put, acting without fear is a privilege that not all of us have.

We believe that being intrepid is an exercise in risk-management, and this looks different for members of a school community depending on the identities and positions they embody and hold. We also believe that if we are not intrepid enough, we risk compromising our morals and upholding inequitable status quos.

If making social justice progress is what we want, then we must have critical awareness of the privileges and power we hold and speak for ourselves and others if we're able to, even when it pushes us out of our comfort zones. We must understand when risks are harmful and work on creating conditions so that we can continue to push schools forward. We must also understand when the risk is simply too great, and work to safeguard those who are vulnerable from harm.

We must embody stances that propel us to continue to be advocates in all the ways that we can. After all, which side of history do we want to be on?

[1] Minority ethnic or ethnic minorities is a political classification used by the UK Government. The authors contend that this terminology is outdated for the global majority.
Angeline Aow is an international educator, learning and development specialist, workshop leader, school evaluator, pedagogical leader, and DEI advocate.
Twitter: @angeaow
Dr. Sadie Hollins is a former head of sixth form at an international school.
Twitter: @_WISEducation

LinkedIn: Sadie Hollins

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The Seven Is of Advocacy: What It Means To Be Intrepid | The International Educator (TIE Online)

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Being intrepid is an exercise in risk-management and looks different depending on the identities and positions people embody and hold...

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On Using NonSpeaking, Minimally Speaking, Or Unreliably Speaking Over “Non-Verbal”: NonSpeakers Weigh In

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On Using NonSpeaking, Minimally Speaking, Or Unreliably Speaking Over “Non-Verbal”: NonSpeakers Weigh In

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By NeuroClastic

August 14, 2021

The words we use influence our own and other people’s perceptions. Non-verbal communication is something we all do — sighs, eye rolls, smiles, stomps, laughs, blinks — but what does it mean when we label a whole person as “non-verbal”?

Nonspeaking doesn’t mean I have no ideas or no way to communicate them. Nonspeaking doesn’t mean I can’t learn to read or write like everyone else. But I can’t if you don’t teach me how. And calling me nonverbal is like saying I can’t learn to read and write.
~ DJ Savarese

Read the whole blog: NonSpeaking ≠ NonVerbal | Listen2Us

I prefer to be called non-reliably speaking. I am perfectly capable of thinking and making intelligent choices regarding my life if I have the facts to analyze. However, my speech is not always reliable, so I have to slow down, think about the placement of my mouth and my articulation, and spell out a word, letter by letter.
~ Rishi Jena

See Rishi’s blog: Rishi’s Totally Optimistic Journey!!

I prefer nonspeaking. Much of what comes out of my mouth is unintentional. I am nonspeaking because speech is not how I communicate.
~ Wyatt Dutton

See Wyatt’s blog here: Young Man Replete with Love

I prefer non-speaking as I understand all language. Non-verbal suggests I don’t understand language and doesn’t represent how I love language.
~ Matt Crittenden

Read more from Matt here: The Joy of Communication

I think that non-speaker tells a more accurate story about the person because that person simply uses a different way to communicate. Other non-speakers might think differently.
~ Mitchell Robins

See Mitchell’s blog here: Differences in Non-Speakers | Mitchell’s Life with Autism

I like to call myself nonspeaking because i can communicate by spelling words instead of speaking. nonverbal implies i do not understand words. how can i communicate with words if i am nonverbal?
~ Philip Reyes

Read Philip’s Blog at Faith, Hope, and Love…With Autism, follow his Facebook Page and check out his articles on NeuroClastic.

I am fully capable of speech, I just can’t let you know by “verbalizing” it out loud. Just because I need to use a letter board – or another form of Alternative Communication – to share my words with the world does not at all imply I not saying things worth hearing.
~ Ben Breaux

#SemanticsMatter

#NonspeakingNotNonverbal

Follow Ben’s Facebook Page: Ben B. – “My Own Words: Reflections of a Non-Speaking Autistic and check out this review of The Reason I Jump.

Non-verbal brings forth a slew of assumptions about me that are entirely inaccurate – including lack of understanding language, aggressive behaviour, lack of emotional intelligence, and cognitive impairment.

I prefer non-speaking as it is a short description that encapsulates who I am more accurately. It also makes people stop and think instead of relying on what they know about me based on what they observe.
~ Jordyn Pallett

Read Jordyn’s Blog: Jordyn’s Rocky Journey and follow his Facebook Page.

The topic of what to call autistics powers the future momentum of our lives. I hate being called nonverbal. It shuts us out of the places we belong. It lowers the places we are in. The places we try to get to are very loud. They are kept for the people with loud voices. Let us be nonspeakers. That’s the gateway to who we are capable of being.
~ Tejas Rao Sanker

Writing for Autistics, makes Autistics learn how to use words carefully. Going to Autistics, getting their in-use words, informs the power autistics have over their words. Let us use the word nonspeaking for Autistics who cannot use speech reliably or at all. It best describes the situations we are forever in. Its future is ours. Trusting words to mean the same in our Autistic movement is the way we go further together.
~ Tejas Rao Sanker

Check out Tejas’ articles on NeuroClastic.

Being nonverbal means I have no words, which is as far from the truth as it can be. I have words, but I can’t get them out with my voice.
~ Gregory Tino

Read more from Gregory here: The Autistic Mind Finally Speaks.

I prefer to be called a nonspeaker.People may think I am not smart because I lack speech. I know better than anyone that Labels are not important.
~ Arun Chand

Check out the latest issue of In Words We Trust, V3 issue 1, for which Arun was assistant editor.

I have words so nonverbal does not describe me. I speak but my words dont reflect my thoughts. My ipad and keyboard are my voice. I would like to have a word that describes me accurately.
~ Jake Reisman

*As always, respect the individual person’s choice, but when referencing a group, go with the preference of the majority.

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This article is either a team effort or is published anonymously at the author's request.NeuroClastic is a nonprofit collective of neurodivergents rewriting the narrative about autism in our own voices. Thank you for visiting, and be sure to help us get out the word by sharing our articles and telling a friend about this site. Like our content? Click here to leave a tip.

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9 Responses

2. Reading this was a pure joy! I clicked through on all of the links and have received so much wisdom from every single individual profiled here. Those who have Facebook pages or blogs which I could select to follow, I am following. I don’t want to miss a single word. How anyone can presume that these beautiful people have nothing to contribute is beyond me. Every one of these voices is valuable.

3. As a non-autistic and aging 70 yr. old white male, I have been LEARNING from this website managed by Terra for the last 3 years since Greta surfaced in Sweden. Then, Terra publicly chimed-in with some timely online education reflecting both Autistic & Aspergers definitions and characteristics. I was specifically looking to learn about this different human trait being professed by a 16 yr. old tiny female while orating to Politicians that “their houses were on fire and they should indeed panic!”

Today’s NeuroClastic Instagram series of illustrated TEXT STATEMENTS about non-speaker’s specific purpose, meaning and feelings –– was wonderfully laid out. Told a great story and helped me further interpret those who think that they cannot talk… Kudos. EXCEPTIONALLY Well done! 🙂

Two months ago after reading more from a non-vocal very young blogger here, I began pondering totally from a mechanical or medical perspective of why someone who can read, write and communicate well –– couldn’t form vocal words if vocal cords, etc., were all in good working order… Where was the breakdown in converting thoughts into spoken, verbal words? Could this be a nerve fiber issue?

My initial thoughts were learning how to speak normal, basic, first audible infant words of Mom, Mama, Mother or Dad, Dada or Father. Then up the learning ladder just like with reading, “see Dick and Jane run and jump, etc.” It is only a quick train ride and you are reading outloud and discussing The Cat in the Hat, etc… I was thinking basics of how to form words, ‘get that closed jaw jacking just a little’ and doing something else besides chewing food. And once a few basics of a, e, i, o & u phonic vocalizations are learned via the throat’s vocal exhale, then the NEW beginner’s own vocabulary can begin emerging.

Sounds quite doable to me. But what the hell do I know? I’ve been a fast and furious talker all my life…

Here is your Science Lesson: Just get over the initial “can’t do it” HUMP and begin something NEW, big and wonderful. It is just like quitting a terrible, addicting nicotine habit in reverse. It IS DOABLE… Simply BEGIN it… Two centuries ago, old Goethe wrote it down and said “DO IT NOW.”

I’ve met someone who when seriously injured and laid up for months in a leg cast, took on the task of reading the Websters Dictionaries, both Western and London versions from A to Z. Fifty years later, the same individual surprises me all the time by using “fancy” new words which really describe something deeper, more incredible. Words that are quite special and not at all common.

Just guessing here –– that some verbally silent autistic people would likely exude a deeper and unique new vocabulary, just as they hone-in their own special brain power, packaging it into special quadrants within their own noggin. Now I am chuckling… Imagine a new post ‘Covid’ Conference Gathering of former autistic non-speakers who simply learned later in life how to vocalize. I’m sure the ice-breaker conversation on the sign-in conference floor would be unique indeed. Good luck! And I’d meet you there and share in a special science lecture discussion about the Oxygen Atom. Bye. 🙂

1. Problems with speech but not reading and writing are either because of differences in coordination, such that your brain has problems telling your tongue what to do, or differences in things like pragmatic communication or audio processing, such that you’re kinda too un-synced to know where to begin to communicate and spoken language is just too much too fast to keep up two-ways.

Confidence almost never has anything to do with it. If anything, its the parents, teachers, and guardians’ lack of confidence that hold autistic people back from communication methods.

Autistic people struggling with mentally creating a spoken language sync with others can sort of fake that sync with scripts, but that’s kinda a highly complicated form of written word, not actual spoken communication. That’s just something that appears like spoken communication from the outside.

4. How do we know this isn’t just the next step in the euphemism treadmill? Maybe 20 years from now all the stereotypes people have attached to nonverbal now will be attached to nonspeaking, and people will be calling for another term to replace it.

1. Nonspeaking is the identifier preferred by the community and not a label imposed by those outside of the lived experience. There is a survey of the nonspeaking community on this very website, for those who want evidence of this preference. It behooves us to respect any minority or oppressed population’s declared preferences. Those whom society and medicine have labelled “nonverbal” have tokd us that they prefer to be called nonspeakers, spellers, unreliable speakers, or delayed speakers, depending upon which status applies to their particular circumstance. They do NOT want to be called “nonverbal”, which, as this article describes, is inaccurate. People who use mouth words do not get to determine which identifiers are appropriate. Nonspeakers are capable of and deserving of self-determination.

6. My son is non-verbal. He is not lacking the ability to communicate. The people around him need to learn to hear differently.

Talk to us... what are you thinking?

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On Using NonSpeaking, Minimally Speaking, Or Unreliably Speaking Over “Non-Verbal”: NonSpeakers Weigh In

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“I prefer nonspeaking as I understand all language. Non-verbal suggests I don’t understand language and doesn’t represent how I love language.”

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Learn why social skills training harms autistic people. Most SLT assessments are full of ableist, stigmatising language that assigns assumptions and judgments onto children. Autistic pragmatic language development are not accounted for.

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Neurodivergent Perspectives - Speech & Language Therapists

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Neurodivergent Perspectives - Speech & Language Therapists

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Home | Divergent Perspectives I Neurodiversity Training

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We are Divergent Perspectives. We provide training for professionals, especially Speech and Language Therapists supporting Neurodivergent / autistic people. We champion Neurodivergent people through non-behavioural based, trauma-informed practice.

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Introduction to ABA | Ivar Lovaas and the origins of ABA | Academic issues in ABA | ABA, law and government | Nonspeaking autistics' experiences of ABA | Who is using ABA in South Africa? | A closing thought
Introduction to ABA

The 'gold standard in autism treatment' is a behaviour modification method called Applied Behavioural Analysis, or ABA. ABA assumes that 'severely autistic' people are 'developmentally delayed', and that they lack the motivation or intelligence (or both) to behave 'normally'. To motivate autists to change their behaviour, and to teach them things they are assumed to not know, therapists called Applied Behavioural Analysts and Behaviour Technicians drill children for hours per day using rewards and withholding of rewards, and in some cases through more explicit punishment (called 'aversives'). ABA is also used to teach life-skills, such as brushing teeth (although for many, this does not work).

ABA is not supported by the majority of autistic people, as it violates the UN Convention on the Rights of People With Disabilities.

A therapist uses PECS (an ABA-based method) with a child in a classroom. The therapist controls the child's arms to select the 'correct' cards and hand them to her. Gradually, the child is encouraged to do this independently.

Some ABA is done at home by parents themselves, replacing normal parent-child relationships.

ABA underlies several other methods as well, including Positive Behaviour Support (PBS) and PECS (Picture Exchange Communication System).

Ilana Gerschlowitz is the Managing Director of Star Academy, which delivers ABA services in several provinces in South Africa. Ilana sees herself as a loving warrior mother waging a war against autism. In her book Saving My Sons, she explains how she has used ABA and other methods in her war. She also describes how she attempted to murder her son David and left him slumped on the floor, and how she learned to remove herself from the situation when she is tempted to murder him.

To understand ABA better, Ilana recommends searching the Internet for information on Ivar Lovaas, one of the 'fathers' of ABA.

Ivar Lovaas and the origins of ABA

ABA as we know it today developed from B. F. Skinner's operant conditioning model for animal training. Lovaas, Rekers and others used these principles and adapted them to create methods for dealing with homosexual and autistic children. George Rekers continued to refine the method to 'treat' homosexual and transgender people, while the same approaches honed for autistic people and others became known as ABA.

Lovaas did not consider autistic children to be people until they had undergone his 'therapy' to 'build a person'. His treatment included electric shocks as punishment for behaving autistically. Although he later modified his approach, electric shocks are used as punishment at the Judge Rotenberg Center (JRC) in the USA as part of ABA to this day. ASAN (an autistic-led organisation), ADAPT and other disability rights organisations protest against this abuse in an effort to have it stopped. The JRC employs Board Certified Behaviour Therapists (BCBAs), i.e. ABA practitioners certified by the BACB (Behaviour Analyst Certification Board).

The following articles provide a glimpse into Lovaas' work. They come with a trigger warning, as they provide accounts of torture and dehumanisation:

Although aversives are still widely used, most modern ABA (and PBS particularly) relies on showing kindness and approval in exchange for the desired behaviour, while deliberately ignoring a disabled child's distress signals, or paying attention to them only if they are expressed in the ways prescribed by the therapist. Some ABA practitioners working in schools will put a sign on the door saying that Planned Ignoring is in progress, so that other teachers will not come to the aid of children they hear screaming.

A printable sign sold online for ABA therapists and teachers to use when engaged in Planned Ignoring.

Children learn that expressing their feelings in autistic ways is unacceptable, and will not be rewarded. Some CARD-trained ABA therapists will not allow non-speaking children to use the signs or symbols for 'no' or 'stop', so that they cannot object to anything done to them.

The Lovaas legacy continues in academia and beyond through the work of ABA experts such as Ron Leaf, who began his career working with Lovaas in 1973, and who has dedicated some of his most recent work to Lovaas. Leaf and his associates discourage the use of other therapies alongside ABA, stressing the importance of 40 hours per week of ABA drills from an early age. He says that he and his associates did their best work in the 1960s when inflicting physical pain was more accepted.

In spite of being complicit in human rights violations, Leaf's licence as a psychologist has never been revoked, and he continues to work with autistic people.

Academic issues in ABA

Besides the lack of endorsement by the community it supposedly serves, numerous other ethical and scientific issues have been raised against ABA by academics such as parenting and education specialist Alfie Kohn, and researcher Dr. Kristen Bottema-Beutel.

Alfie Kohn has spent a good deal of his career explaining the conterproductivity of extrinsic motivation (a key characteristic of ABA), lack of choice, and boring uncontextual learning. In this interview, he explains why even positive reinforcement works to demotivate a learner and harms relationships with parents, therapists and teachers.

In a later Webinar along with Alfie Kohn, Dr. Elizabeth Torres explains how behaviourism, and ABA most notably, works against natural healthy childhood development. She points out also that an enormous body of ABA research (the so-called evidence base of this allegedly 'evidence-based' method) violates the Declaration of Helsinki that is supposed to govern ethical research on humans worldwide.

Bemusingly, PACA (the Pan-African Congress on Autism, which has been instrumental in the establishment of the ABA organisation PAABA) said that they would check to ensure that submissions for their 2022 conference meet the criteria of Helsinki Declaration. Given that they also claim respect for the CRPD in their mission statement while repeatedly demonstrating contempt for this treaty, their statement in this regard should perhaps be taken with a bucketful of salt.

Dr. Kristen Bottema-Beutel has published a series of studies showing widespread ethical problems with early intervention studies over many decades. These issues include a lack of adverse events tracking, a lack of informed consent, inadequate sample sizes, studies without control groups and numerous other issues. Her May 2021 study, co-authored by Shannon Crowley, is titled Pervasive Undisclosed Conflicts of Interest in Applied Behavior Analysis Autism Literature.

In 2016, a large-scale study was commissioned by the US government at the request of the Department of Defense (DoD) to determine the effectiveness of ABA. They did this because the DoD have to pay for therapy for the autistic children of their employees-over $23,000 per child per year, which adds up to more than $1.5 billion, given the number of children in the programme! The conclusion of the study was that ABA is not effective. In fact, many children were shown to be worse off for having had ABA, even by ableist measurement criteria. ABA providers were angry about the conclusion, and said that the study was not done properly. Dr. Barry R. Nathan explains why their objections are invalid.

ABA, law and government

ABA was originally developed to turn homosexual people into heterosexuals, starting at an early age when children display gender non-conforming behaviour. In some parts of the USA, Australia and other regions, it is no longer legal to use ABA for this purpose. However, it has not yet been banned for use against autistic people. In some countries, such as the USA, the government pays for autistic children to undergo ABA, and parents may even by forced to keep their children in ABA, as described in this first-hand account. In the USA alone, the ABA industry rakes in approximately 17 billion dollars per year, and is gearing up to expand even further with the support of Autism Speaks.

Needless to say, ABA is not supported by the majority of autistic people, as it violates the UN Convention on the Rights of People With Disabilities. Autistic human rights activist Ruti Regan explains how this makes ABA, even in its 'gentle' forms, different from typical parenting.

A few people voluntarily undergo ABA to acquire new habits, but compared to the numbers who undergo ABA as forced compliance, this is rare.

There is now a global movement to ban ABA, with activists lobbying government in the US, Canada, UK, South Africa, New Zealand and Australia, and awareness campaigns on other countries. In South Africa, the initiative has support from the Council for Counsellors and many parents and allied health professionals.

Non-speaking autistics' experiences of ABA

Emerging evidence shows that apraxia is the primary reason why many autistic people either don't speak at all, or do not speak reliably or effectively.

Autistic people who have apraxia struggle with purposeful movement. This means that they will struggle to execute even the babyish tasks given to them by Applied Behavioural Analysts, while those who have fewer movement problems may become more adept at faking normal and developing the responses which parents and therapists deem necessary. Nonspeaking author Ido Kedar (also quoted below) elucidates this discrepancy based on his experience.

See also: Six Things You Should Know About Apraxia

While there are many accounts of the traumatic effects of ABA written by autistic people who speak well, the present article features only the writing of non-speaking autistics. Their words are significant, because the more disabled and apraxic the individual, the more likely they are to be targeted with ABA.
40 hours a week of touching flashcards won't help a toddler who may have an inability to focus visually, or hear speech distinctly in a sea of sounds, or be able to move the way he wants, to gain the sensory control or muscle control he needs to be able to communicate or show his intelligence. That's because ABA believes autism is a severe learning disability that is treated by drills, rewards and baby talk. This makes recognition of the motor challenges nearly impossible because all the data from the child's success in performing the drills is interpreted as a measure of how much the child understands speech, and not of whether the child can get his body to move correctly. Therefore if a child is told to jump and he doesn't jump because he can't get his body to move at that moment in that way, his failure is chalked up to a lack of understanding the word 'jump' even if he damn-well understands the word 'jump' and everything else. To interpret data solely based on the belief that a person's actions are an accurate reflection of their comprehension of speech, leaves out the possibility of helping this motor trapped person address his real needs. As someone who has had every sort of treatment thrown at them, I say don't do any of these things! No child should be in 40 hours of therapy like I was. The most effective thing my parents did was to join me in cutting paper and the things I loved to do. It was the only way I knew to connect with the outside world. All the rest of it was irrelevant. Understanding that your child experiences the world very differently from you is the first step towards acceptance. Sometimes I wonder what my childhood would have been like had I just been allowed to be able to do my own thing. Stopping my behaviors was the wrong way to go. Fortunately, I'm a pretty patient guy. Some recommend up to 40 hours per week of this "therapy", which consists of commands an Autistic child must follow to exhaustion, responses an Autistic child must give "correctly", even if the answers don't match the child's feelings or preferences, and the repression of movements that Autistics use to regulate their own bodies. Besides this extreme regimen, the "experts" insist that parents use the same tactics at home. So, parents pay a lot of money to people who don't allow Autistics to experience growth, and the world, the Autistic way. They pay for abuse. Parents are made to feel guilty and encouraged to force their children into molds that were not made for them. Autistic children are not allowed to be themselves, being forced instead, to learn how to pretend, never learning self-determination, never allowed to have an independent thought. Not surprisingly, the majority of ABA proponents are making a lot of money by stealing the childhood of Autistic children. 40 hours/week of drills, plus homework, the children don't experience their own personal development. This is considered abuse, if done to non-autistics. And then we have to hear that WE cost too much money. Wrong: ABA therapists cost too much money. Take them out of our lives, let Autistic children be children. Let Autistics develop in our own time, learning about ourselves, learning self-determination. I can hear the apologists: "My ABA is not like that." If you bill ABA prices, if you want to change how an Autistic acts, reacts, or interacts with the world, and your ideal model is a neurotypical type of behavior, your ABA is as bad as I described it. How would you know, if she is not allowed to have her own thoughts? The word "no", or refusal to comply with the therapist's commands, are not allowed. Another reason is that children do learn to fake in order to please. That is, after all, what ABA defines as success: obedient pleasers. It is not enjoyment, pleasant or something to look forward to. Yes, some children might show enjoyment in some moments, but I did too, when I got my cookie for looking at the therapist. I wanted that cookie, I briefly looked at her, I got my wish. You could say that, at that moment, I "loved it".
See also: Appearing to enjoy behavior modification is not meaningful
"It is not as bad as you think." Yes it is. Putting children through unending hours of training, not allowing them to be who they are, forcing an experience of the world we Autistics can never naturally have, and stating how not good enough we are to everyone else is pretty bad. It is abusive. It is disrespectful. "Autistic children need to learn certain skills." All children do. Respectful approaches don't cause trauma and value our essence. It does not imply we are broken. All children make mistakes and they have a chance to learn, they are kindly guided and taught. But to ABA proponents, Autistic children (and Autistic adults) are not allowed to err, or they are forever labeled a failure, or abused until they "get it right". I had some ABA when I was young, and I "flunked". I want to say, I am proud of this "F" in my life. Of course, the "experts" explanation for having failed to make me into a "tidy", "appropriate", "good girl", obedient and compliant Autistic was my severe impairment, my extreme low IQ, my inability to learn or, as Lovaas would probably have said (and something a doctor actually said), my lack of human dignity. I prefer my own assessment: if you want something from me, if you want me to do something, respect who I am, respect my way of doing things, listen to me and allow me to disagree and to find my own way. ABA rejects all of this and that's why I failed it. I am, though, a very disabled Autistic who needs a lot of support, but who is completely independent in what I believe matters most: my thinking, my ideas, my decisions, my identity. I am completely distinguishable from my peers, and proudly so. I am free to say "no" when I see fit. And I do. As an autistic boy, I want you to know I am happy. My autistic neurology makes me think very differently than most people. I can sense the world keenly, making me a very observant person. People make wrong assumptions about people who don't act like a typical person. Making assumptions about something as important as your child is dangerous if you make the wrong conclusions. I have lived the consequences of my parents' wrong assumptions. Being thought as retarded and in need of remedial education assigned me to many years of ABA and useless therapies based on neurotypical assumptions of autism. Man assumes many things they don't really know. The best way to know someone is to hear from them personally. The only way to hear from me has been through RPM (Rapid Prompting Method). I think most autistic people can make use of assistive means to communicate. Parents should look into learning more communication methods. Body awareness programs would also help a lot. My parents have done a lot of therapies. Making life as normal as possible and helping us to communicate is what makes the biggest difference in our lives. Please teach us interesting things. Don't just address the things you want to fix. Accept us the same way you want to be accepted yourself. Mainly, maintain an attitude of love and patience towards us. Making us feel loved is an essential part of helping us meet the challenges of living in this world. I was treated with mostly kindness, but the therapists could not see beyond their training. I learn quickly, but am not able to reply with words that sound right to another. Worry becomes everyone's focus. Real learning happens when no one notices. The goals waste away. Tender feelings do not hurt, but are not helpful because they cannot soothe wounds of being constantly underestimated. We did ABA (applied behaviour analysis) for a short time before we worked out how terrible it is. Autism can't be cured, and you can't train us like dogs. What the ABA people are missing is that autism is neurological and that we are whole people with no pieces missing. They presume incompetence. There were nearly a dozen nonspeakers in an official consultation on Canadian autism policy. EVERY SINGLE ONE OF US just tore into ABA. Kids, adults, teens, all of us just explaining how awful and harmful it is. ...not sure they believed us.
The following account is different in that Jay Jay is no longer nonspeaking.
I was in ABA for about twelve years, beginning around age four; it got less and less around my teenage years and eventually fully stopped around age 14. I can firmly say that ABA stole my childhood, and the resulting (professionally diagnosed) complex post-traumatic stress disorder stole my adulthood. ABA groomed me for every trauma I endured later in my life, from abusive relationships in my adult years where I was physically and mentally injured by partners, to being molested for seven years, starting at six years old, by my uncle. I was nonspeaking until I was 12. I understood language, and I consider poetry my first language-it was a special interest at the time I was nonspeaking and remains one to this day-but my lack of verbal-vocal speech was a motor function trouble. ABA, quite literally, starved words out of me. Around age 12, it was decided by the behavior therapists who were doing ABA to me that I was a "big girl" who needed to ask for food. They decided food would be a motivator for me, as if I needed motivation to speak rather than needing help strengthening my muscles, motor planning skills, or moving my body intentionally. My two guaranteed meals were at school as I grew up pretty poor, and it was written into my behavior plan by the people traumatizing me that I needed to ask to be fed-the nonspeaking child needs to ask. I related this story to a BCBA recently who had told me that ABA had changed; her response was, "well, it worked." I feel this anecdote demonstrates the fundamental cruelty of ABA.
I say ABA groomed me for my traumas because I believe that ABA and the existential torture that Autists are forced to endure via ABA is fundamentally child grooming. ... [ABA] forces the Autistic to endure fear and pain while suppressing outwards signs of it like crying, vomiting, eloping, covering ears, or flapping. Once the outward signs of distress are gone, ABA claims that the distress is gone. By the time my uncle began molesting me, ABA had taught me, through the way it forced me to endure pain for the comfort of others, that my body was not my own. When my uncle came to my room at night to molest me, the first thought in my child-mind was that this was the same thing as therapy, that if I was quiet and kept my body still, it will be over quicker than if I fought-because I learned that in ABA as well. When my first partner began hitting me when I was 18 through 20-something, I was convinced it was something to do with me, as if I was a bad or broken person who deserved it. ABA had taught me that the people who purport to love you will hurt you, and with the same breath, say they have your best interests at heart.

Who is using ABA in South Africa?

While some are vehemently against ABA, many autism schools, therapy centres and independent therapists in South Africa provide ABA services or incorporate ABA principles in their approach. Descriptions such as 'ABA grounded' and 'ABA based' are common, showing that these service providers see ABA as a positive selling point. Approaches that align to the nihil de nobis sine nobis principle embodied in the CRPD are seen to be unimportant. Simply put, many service providers don't think they should be led by what actual autistic people say harms them or helps them.

ASAP Autism in Somerset West and Amazing K Autism School in Johannesburg emphasise ABA in their marketing.

SNAP (based in Durbanville) provides one-to-one ABA as one of their services, and use a variety of other ABA-based approaches (including PECS) in their work.

Els for Autism focuses largely on providing ABA services, emphasising the need to start as early as possible.

REACH Autism and Luc Academy both employ ABA in their work. The parents who lead these companies have also used chlorine dioxide on their children and encouraged others to do so.

Using chlorine dioxide on children is both harmful and illegal. The chemical, also referred to as CD and sold as MMS, is administered to autistic children by means of a rubber hose up the anus to force it into the intestines. It is also squirted into other orifices and sometimes into the eyes. The belief is that this will cure the children of mythical lifeforms called ropeworms that breed at full moon and cause autism. People who ascribe to these quasi-religious beliefs ironically refer to symptoms of chlorine dioxide poisoning as "signs of detox". None of the South African perpetrators who have confessed to these crimes have yet been convicted. They continue to work with children using ABA. A few CD/MMS sellers have been arrested in other countries, but tens of thousands of sellers and users are still at large. While it is common for MMS believers to use ABA, the reverse is not true; most ABA practitioners do not believe in the existence of ropeworms, and discourage the use of chlorine dioxide.

Star Academy is one of the most expensive ABA schools in South Africa and has several branches. Therapists at Star are trained according to the CARD model of ABA. (Some of the parents whose children attend Star Academy have also used chlorine dioxide on their children, but it is unclear how prevalent this is among the rest of the families. Therapists and parents who were asked have declined to comment.)

The founder of Star Academy, Ilana Gerschlowitz, also runs an ABA-based programme called Catch-Up-Kids.

AIMS Global does not use ABA, but requires that its therapists be trained in ABA, and recruits them accordingly. They also make it clear to clients that their therapists are ABA-trained, and (perhaps because of this ambiguous marketing), some AIMS therapists report that parents expect them to 'fix' their children. The founder of AIMS, Karla Pretorius, also says that ABA experience is important for dealing with children who are aggressive. (Many former ABA practitioners who have denounced ABA disagree.)

Newberry Park (also known as Child Behaviour Consultants), says, "We specialize in providing highly individualized 1-on-1 and group interventions. ABA is the only intervention with more than 50 years of scientific evidence and is seen as an effective treatment of ASD." They defer to the BACB.

Blossom Interventions similarly uses an ABA hashtag in their marketing, and says that "we are previously trained in ABA; however we do not fully apply it in therapy anymore. We prefer using a combination approach that ensures we deliver customised strategies for every child."

Many other schools, therapists and other professionals use ABA in some form when working with autistic children.

Some organisations, such as the Neurodiversity Centre in Paarl, partner with ABA organisations on projects even though they do not support ABA themselves.

Incredible Minds Adaptive Learning Centre in Durban will not collaborate with anyone who does ABA.

The Sisu Hub and Ligno Academy likewise do not support ABA.

Some clinical professionals (such as Speech & Language Therapists and Occupational Therapists) do not publicly declare their opposition to ABA, as they are concerned that they may not receive referrals if they do so, or that they may lose existing clients who are in ABA. Others have found that being outspoken against ABA has gained them the trust of parents who seek solutions for their children that autistic people themselves support.

A closing thought

The first non-speaking author quoted above, Ido Kedar, learned to communicate his throughts via a letterboard, as did a number of the others quoted here. The letterboard is held in position by a parent, therapist or aide. In the early stages of learning, there may be a lot of prompting to develop accuracy of movement, hence the name Rapid Prompting Method. Some newer methods, such as Spelling to Communicate, also make use of letterboards. Prompts fade as the autistic client perfects their skill.

Ido has been the victim of scathing attacks by promotors of ABA. One of them claimed that his words were not his own, but that he was trained like a horse to merely appear clever. Ido realised that these invalidations would continue to plague him unless he developed the ability to type independently, which he eventually did with the help of a therapist.

To this day, though, disabled people like Ido who have high support needs are silenced by powerful people in the multi-billion dollar 'behavioural health industry' (as investors call it) and by well-meaning therapists, parents and teachers who fall for ABA and become its foot-soldiers. Many never imagine that non-speaking autistic people may have something to say, and prize the few nonsensical words that emit from their mouths whilst refusing to believe that something very different and far richer lies within.

Human dignity does not reside in the ability to make eye contact, to move fluidly, to speak, or to live alone.

Human dignity most certainly does not reside in speaking over non-speakers in defense of ABA.
International initiatives to ban ABA

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Nonspeaking autists' experiences of ABA | Autistic Strategies Network

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Introduction to ABA | Ivar Lovaas and the origins of ABA | Academic issues in ABA | ABA, law and government | Nonspeaking autistics' experiences of ABA | Who is using ABA in South Africa? | A closing thought The 'gold standard in autism treatment' is a behaviour modification method called Applied Behavioural Analysis, or ABA.

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Redefining Autism Science with Monotropism and the Double Empathy Problem

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Redefining Autism Science with Monotropism and the Double Empathy Problem

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If we are right, then Monotropism is a theory of autism developed by autistic people, initially by Dinah Murray and Wenn Lawson.Monotropic minds tend to have their attention pulled more strongly towards a smaller number of interests at... monotropism More is one of the key ideas required for making sense of autism, along with the double empathy problem and neurodiversity. Monotropism makes sense of many autistic experiences at the individual level. The explains the misunderstandings that occur between people who process the world differently, often mistaken for a lack of empathy on the autistic side. describes the place of autistic people and other 'neurominorities' in society.
Monotropism - Welcome

Monotropism and the Double Empathy Problem are two of the biggest and most important things to happen to autism research. In the previous two issues of the Guide to the NeurodiVerse, " From an Ivory Tower Built on Sand to Open, Participatory, Emancipatory, Activist Research" and " Mental Health and Epistemic Justice ", we tackled some bad trends in autism science. In this issue, we celebrate two trends that get it right.

Introducing Monotropism and the Double Empathy Problem

Monotropism is a theory of autism developed by autistic people, initially by Dinah Murray and Wenn Lawson.

Monotropic minds tend to have their attention pulled more strongly towards a smaller number of interests at any given time, leaving fewer resources for other processes. We argue that this can explain nearly all of the features commonly associated with autism, directly or indirectly. However, you do not need to accept it as a general theory of autism in order for it to be a useful description of common autistic experiences and how to work with them.
Welcome - Monotropism

These two videos, totaling less than 10 minutes, are wonderful ways to get in touch with modern autism science.

Understanding monotropism and the double empathy problem will help you get things right, instead of wrong, when interacting with autistic people.

If an autistic person is pulled out of monotropic flow too quickly, it causes our sensory systems to disregulate.

This reaction is also often classed as challenging behavior when really it is an expression of distress caused by the behavior of those around us.

How you can get things wrong:

Not preparing for transition

Too many instructions

Speaking too quickly

Not allowing processing time

Using demanding language

Using rewards or punishments

Poor sensory environments

Poor communication environments

Making assumptions

A lack of insightful and informed staff reflection

An introduction to monotropism - YouTube

Let me put this in no uncertain terms: if you do not understand the Double Empathy problem you have no business writing anything at all about autism for general consumption. This is not because you are a bad person - it's because you have missed the most important memo in Autism research in decades.
How To Talk About Autism Respectfully: A Field Guide for Journalists, Educators, Doctors and anyone else who wants to know how to better communicate about Autism

Below, we excerpt from studies, books, and What I have always been hoping to accomplish is the creation of community.Community is magic. Community is power. Community is resistance.Disability Visibility: First-Person Stories from the Twenty-First Century community https://www.amazon.com/Disability-Visibility-First-Person-Stories-Twenty-First-ebook/dp/B082ZQBL98/ https://www.amazon.com/Disability-Visibility-Adapted-Young-Adults-ebook/dp/B08VFT4R9T/... More resources on these two very important topics.

Monotropism

Understanding how autistic pupils experience secondary school: autism criteria, theory and FAMe

In Monotropism theory it is proposed that there exists a limited amount of attention available to anyone at any given time that may either be broadly distributed over many interests or concentrated on a few interests, and that , in the spread of attention available to individuals, follow a normal distribution pattern across the entire human population (Murray et al., 2005). Seen in this way 'Monotropism is not a model of autism as such...[but]...a theory about human beings, in which autism has a natural role' (Lesser, cited in Burne, 2005). Thus, according to Monotropism theory, the difference, between autistic and non-autistic, is in the strategies employed in the distribution of scarce attention, i.e. 'it is the difference between having few interests highly aroused, the monotropic tendency [autistic], and having many interests less highly aroused, the polytropic tendency [non-autistic]' (Murray et al., 2005, p.140). Monotropism theory therefore meets the 'unique' to autism criteria for 'good' theory proposed by Rajendran and Mitchell (2007, p.224).

Unlike many theories, which appear (to me) to offer no practical real-life benefit to the autistic community, Monotropism theory is used to propose a heuristic guide to facilitate positive engagement with autistic individuals (ibid, p.153). In addition, distinct from all other cognitive theories, Monotropism theory places value on the input of autistic voices (Milton, 2012). The original article, (Murray et al., 2005), is rich with descriptive accounts of autistic experiences, for which theoretical explanations, of the cognitive mechanisms at work, are proposed.

The authors demonstrate how Monotropism theory provides potential explanation for all aspects of the diagnostic criteria (DSM-5, 2013), and offers an alternative, difference in autistic processing, account for the cognitive difficulties previously hypothesised to be affected by deficits in (empathy), executive functioning and central coherence (Milton, 2011; 2012). These earlier theories made assumptions based upon interpretations of observed behavioural traits (ibid) with no reference to how it 'is' to be autistic 'from the inside according to how it is experienced' (Williams, 1996, p.14).

Monotropism is the first theory of autism to attempt to draw on subjective autistic experience (Milton, 2012). Furthermore, whilst '[n]one of the three dominant cognitive theories of autism seek to explain the sensory aspects of autism' (Chown, 2017, p. 235), also absent from E-S theory, Monotropism theory provides credible explanation for the sensory hyper- and hypo-sensitivities described by autistic authors (e.g. Blackburn, 2000; Grandin, 2006; Lawson, 2014), documented by Bogdashina (2016), and included in the revised diagnostic criteria (DSM-5, 2013). Thus Monotropism theory also potentially meets the 'specificity' and 'universality' criteria for 'good' autism theory (Rajendran and Mitchell, 2007, p.224), as well as that of 'uniqueness'.
Understanding how autistic pupils experience secondary school: autism criteria, theory and FAMe

Me and Monotropism: A unified theory of autism

Monotropism provides a far more comprehensive explanation for autistic cognition than any of its competitors, so it has been good to see it finally starting to get more recognition among psychologists (as in Sue Fletcher-Watson's keynote talk at the 2018 Autistica conference). In a nutshell, monotropism is the tendency for our interests to pull us in more strongly than most people. It rests on a model of the mind as an 'interest system': we are all interested in many things, and our interests help direct our attention. Different interests are salient at different times. In a monotropic mind, fewer interests tend to be aroused at any time, and they attract more of our processing resources, making it harder to deal with things outside of our current attention tunnel.
Me and Monotropism: A unified theory of autism | The Psychologist

The biggest practical thing to take away from this is the importance of meeting the child, or adult, where they are. This is not an insight unique to the monotropism perspective, but nothing else I've seen demonstrates with such clarity why it's so crucial. Treat interests as something to work with. Recognise what someone's passionate about and learn how to become part of the which come with monotropic focus, rather than trying to just reach in and pull the person out of the flow states that are so important to us. Never pathologise 'special interests', and don't assume that autistic interests are 'restricted'  - there are plenty of ways to get us interested in new things, it's just that they mostly involve taking existing interests and building on them.
Me and Monotropism: A unified theory of autism | The Psychologist

Monotropism: An Interest-Based Account of Autism

Monotropism: An Interest-Based Account of Autism

Autistic children and intense interests: the key to their educational inclusion?

Autistic children and adults are often described as 'obsessive' or as having 'narrow', 'restricted' or 'circumscribed' interests. And when this trait is associated with being 'fixated' or very repetitive, it's generally considered to be highly undesirable, and some behaviour interventions actively set out to diminish or even 'extinguish' these 'fixations'.

In fact, autistic academics such as Dr Wenn Lawson and Dr Dinah Murray have been writing and speaking about this for over two decades, with Dr Damian Milton, Fergus Murray and others also making important contributions over recent years. Framed by these writers as 'monotropism' - a tendency to focus on certain issues or activities in depth to the exclusion of other inputs - this fundamental autistic trait is presented much more positively here, although, importantly, the drawbacks are not ignored.
Autistic children and intense interests: the key to their educational inclusion?

Inclusive Education for Autistic Children

There is, in fact, a growing body of research evidence to support the idea that, despite a few drawbacks, enabling autistic children to have access to and develop their areas of interest is highly beneficial for their education and broader inclusion in school (Gunn and Delafield-Butt 2016).
Inclusive Education for Autistic Children (p. 99)

So how do autistic children learn? Well, a key concept, promoted mainly by autistic scholars, is 'monotropism', which is described as a tendency to focus on a single issue or activity, in depth, to the exclusion of all others (Lawson 2011; Murray, Lesser and Lawson 2005). A person who is monotropic in their thinking style might have a relatively small number of areas of interest, but they are experienced in a very deep and compelling way (Milton 2012b). Indeed, although monotropism can result in a difficulty in shifting attention from the area to interest to another (Murray et al. 2005), it appears to be a more positive way of describing autistic cognition, setting aside pejorative terms such as 'fixated' or 'obsessive', for example (Wood 2019). This cognitive disposition can be compared with 'polytropism', which denotes a tendency to attend to a number of activities or issues (sometimes called 'multi-tasking'), but these are inevitably explored in less depth and with little sense of urgent preoccupation (Murray 2014).

Many school staff, and some of the parents, felt that autistic people are inherently 'obsessive' or set in their ways, showing that when a monotropic thinking style collides with an inflexible education system (Glashan et al. 2004), difficulties arise. And so, if an autistic child has strong interests in certain areas, and these don't fit in with the school curriculum, it will be very hard work for school staff to try to persuade them to focus on something else, as well as potentially distressing for the children if they are simply unable to shift their attention.

However, one of the most striking findings from my study was the extent to which enabling autistic children to incorporate their interests (sometimes called 'special interests' or 'restricted interests') into their learning not only addresses the core issue of concentration and motivation, but also means that school staff don't need to keep prompting them to stay on task. Indeed, being able to focus deeply on their areas of interest appeared to provide a range of positive functions for the autistic children, including helping them to cope with the stress of school, improved communication, better access to the curriculum and tests, greater independence, more socialisation and overall enjoyment of school. Therefore, I found that actively embracing the monotropic thinking style of autistic children often helps, rather than hinders, school staff and the autistic pupils.
Inclusive Education for Autistic Children (pp. 96-99)

The Passionate Mind: How People with Autism Learn

In AS, monotropic attention is not seen as a choice but as integral to our learning style.

The Passionate Mind: How People with Autism Learn

The Passionate Mind: How People with Autism Learn

The term monotropic describes single attention and single channels for accessing and processing information (mono: single; tropism: direction/channel). NT developing individuals, although able to be single-minded at times, can respond to another interest or situation and shift their attention whether interested or not. This means they can use polytropic attention, which necessitates dividing their attention between a number of differing concerns simultaneously (poly: many) and accommodating many channels of information at any one time. Polytropism in typical individuals is argued to be their default learning style. This concept will be explored in more detail in this chapter.

I know that for many of us, shifting attention from an aspect of interest to one that we are not interested or invested in is very difficult. However, in AS this is often the reason we prefer sameness and routine, and why we may even appear to have one sense that dominates another. I suggest we use single attention connecting with and processing information one step at a time, which is the monotropic disposition, as our default setting. Therefore, attention and the interest system will work hand in hand to create an attention, interest, sensory-motor loop leading to a cognitive style.

Monotropism, or having the ability to home in on one aspect of communication or on one interest at one time, can happen to NT and AS individuals. However, rigid monotropism often occurs in an AS individual's world, and we are said to have 'tunnel vision' (Attwood 2007) or, as parents often say, 'my child seems only to be interested in his or her interests'. Monotropism will mean, for most of us, difficulties coping with change because we are single-minded. For many, this is demonstrated in our difficulties with change in routine, expectation, instruction, daily schedule, movement of attention or incorporating another set of demands into the present scenario. For example, coping with change can involve listening and then being required to participate in decision making without due time to process information; thus, being forced to move from one channel to another (Kluth and Chandler-Olcott 2008).

For many of us the discomfort at encountering change is one consequence of being attention-tunnelled or monotropic (e.g. Bogdashina 2006; Greenaway and Plaisted 2005; Murray et al. 2005).
The Passionate Mind: How People with Autism Learn

In a monotropic interest system connectivity is more streamlined but less diffuse than that of the typical population. This might be due to an interest system that is more 'pure' in the sense that it hasn't been modified or contaminated by other people's expectations (D.K.C. Murray, personal communication, 10 March 2005).
The Passionate Mind: How People with Autism Learn

The Passionate Mind: How People with Autism Learn

Whether we align our interests with others as in polytropism or follow the dictation of our dominant interest, as in monotropism, it's all about 'interest'.
The Passionate Mind: How People with Autism Learn

The Passionate Mind: How People with Autism Learn

I suggest that problems in AS, such as building connections to concepts, are founded in monotropism, which leads to fewer connections between attention, interest and sensory and motor dynamics.
The Passionate Mind: How People with Autism Learn

Learning From Autistic Teachers

We're back to monotropism again, because attention is not only about being in cognitive love; attention can be focused on anything. It's whatever you are doing in a particular moment that engages you. When you are monotropic you lock onto that thing. Your senses are engaged with that thing. You must build up energy to get into it and once you are there you enter what is called a 'flow state', where everything in your body is flowing towards the task in hand (McDonnell and Milton 2014). So, any deviation, any pull away from that flow, is difficult to deal with.
Learning From Autistic Teachers (p. 65)

Learning From Autistic Teachers (pp. 30-31)

But one thing is particularly important to my purposes here: our hyperfixations adore company, and if an autistic person is given the opportunity to share their passion for the subject with friends, relatives or complete strangers, then you can expect high levels of enthusiasm, enormous amounts of data and information to be delivered, and impressive levels of knowledge. In short, if you want to be taught something, you can do a lot worse than be taught about it by an autistic person for whom it is one of their special interests. I have been taught about various subjects by openly autistic people and the experience has invariably been truly fantastic, and my understanding of the topic afterwards deep and thorough.
Learning From Autistic Teachers (pp. 30-31)

The Monotropism Questionnaire

Think you might be monotropic? Try this questionnaire.

After a period of instability, I need a quiet and predictable environment.

I need a quiet and predictable environment for me to switch from one task to another easily.

I often struggle to concentrate in busy and/or unpredictable environments.

I find sudden unexpected disruptions to my attention startling.

It's distressing to be unexpectedly pulled away from something I'm engaged in.

I rarely find simultaneously holding eye contact and making a verbal conversation with another person uncomfortable. *

I often notice details that others do not.

Involvement in an activity of interest often reduces my anxiety level.

I find social interactions more comfortable if communicating about a topic of interest to me.

I am often totally focused on activities I am passionate about, to the point I am unaware of other events.

I can get quite good at something even if I'm not especially interested in it. *

I often lose sense of time when engaging in activities I am passionate about.

I sometimes avoid talking because I cannot reliably predict how others will react, especially strangers.

I tend to do activities because I find them interesting, instead of due to societal expectations.

I rarely find social situations chaotic. *

I don't mind if someone interrupts me when I'm in the middle of an activity. *

When I'm working on something, I'm open to helpful suggestions.*

I often find it difficult to switch topics after engaging in an activity for a long time.

I often engage in activities I am passionate about to escape from anxiety.

Routines provide an important source of stability and safety.

I manage uncertainty by creating routines.

I often experience anxiety over matters I have little certainty over.

I find it difficult to engage in a task of no interest to me even if it is important.

I often find engaging in Self-stimulatory behavior, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or words, or the repetitive movement of objects Stimming - Wikipedia Autistic adults highlighted the importance of stimming as... stimming More (e.g., fidgeting, rocking) to be relaxing.

I am usually passionate about a few topics at any one time in my life.

I have trouble filtering out sounds when I am not doing something I'm focused on.

I usually mean what I say and no more than that.

I often engage in lengthy discussions on topics I find interesting even though my conversational partner(s) do not.

I sometimes accidentally say something others find offensive/ rude when I am focused on a task.

I can sometimes be very distressed by a topic that others think of as trivial.

I find it easy to keep up with group discussions where everyone is speaking. *

Often when I am focused on activities, I do not notice I am thirsty or hungry.

Often when I am focused on activities, I do not notice I need the bathroom.

When there is a lot of information to consider, I often struggle to make a decision.

Sometimes making a decision is so hard I get physically stuck.

I sometimes focus on an incident for a substantial time (days) after the event.

I sometimes become highly anxious by focusing on the many possible situations that might occur at a future event.

Sometimes when I am focused on an activity, I do not recall all the information I might need to make good decisions.

People tell me I get fixated on things.

I find a problem I can't solve distressing and/or hard to put down.

I tend to feel quite self-conscious unless I'm deeply absorbed in a task.

I often get stuck thinking about all the possibilities that might come out of a decision.

When I am interested in something, I tend to be passionate about it.

When I am interested in a topic, I like to learn everything I can about that topic.

I am still fascinated by many of the things I was interested in when I was much younger.

I rarely find myself getting stuck in loops of thought. *

I often loop back to previous thoughts.

Double Empathy Problem

I find great value and meaning in my life, and I have no wish to be cured of being myself. If you would help me, don't try to change me to fit your world. Don't try to confine me to some tiny part of the world that you can change to fit me. Grant me the dignity of meeting me on my own terms - recognize that we are equally I believe all persons with Autism need the opportunity to become friends with other Autistic people. Without this contact we feel alien to this world. We feel lonely. Feeling like... alien More to each other, that my ways of being are not merely damaged versions of yours. Question your assumptions. Define your terms. Work with me to build more bridges between us.
Sinclair 1992a, p.302

From finding a voice to being understood: exploring the double empathy problem

The 'double empathy problem' refers to the mutual incomprehension that occurs between people of different dispositional outlooks and personal conceptual understandings when attempts are made to communicate meaning.
From finding a voice to being understood: exploring the double empathy problem

Autism and the 'double empathy problem' | Conversations on Empathy

The of autistic social interaction fails to acknowledge relationality and how social reality is constantly reconstructed and contested by social agents, often representing the autistic person as lacking agency, of being somehow outside of society and processes of socialisation, and therefore outside of 'normalised' concepts of empathy. This notion of autistic people as being in deficit is reinforced by a variety of theories and accompanying in relation to their sociality and interaction, whereby autistic people are framed as lacking a theory of mind (Baron-Cohen et al. 1985), lacking in empathy (Baron-Cohen et al. 2002) and being 'mindblind' (Baron-Cohen 1995). Particularly of note are the assertions that a theory of mind is a 'quintessential aspect of being human' (Baron-Cohen 2000, p. 3) and that autistic people are unable to empathise (Baron-Cohen et al. 2002). Assumptions surrounding what constitutes 'empathising' and 'systemising', and their association with specific genders and roles (Sample 2013), has led to critique and debate on the usefulness of this concept when applied to autistic people. Empathising in relation to autistic people has been defined as 'having an appropriate emotional reaction to another person's thoughts and feelings' (Baron-Cohen 2009). Questions remain as to who defines an 'appropriate' emotional response. Although some may link empathising with aective empathy (Davis 1994), social norms may contribute to what may be considered 'appropriate' in terms of the appropriateness of an emo- tional response. Discussions of 'appropriateness of emotional response' run the risk of radically othering social actors from different lifeworlds, through situating the interactional onto the individual - in this case, the autistic individual who sits at a disempowered position (Milton 2016).
Autism and the 'double empathy problem' | Conversations on Empathy

The 'double empathy problem': Ten years on

In simple terms, the 'double empathy problem' refers to a breakdown in mutual understanding (that can happen between any two people) and hence a problem for both parties to contend with, yet more likely to occur when people of very differing dispositions attempt to interact. Within the context of exchanges between autistic and non-autistic people however, the locus of the problem has traditionally been seen to reside in the brain of the autistic person. This results in autism being primarily framed in terms of a social communication disorder, rather than interaction between autistic and non-autistic people as a primarily mutual and interpersonal issue.

It has been 10 years since the 'double empathy problem' as a term was first described within the pages of an academic journal ( Milton, 2012). Although, importantly, the conceptualisation of the issue has since its inception been influenced by and framed within a broader history of academic theorising (particularly from the disciplines of Sociology and Philosophy). Yet, this coining of the term helped express an issue that had long been discussed within autistic community spaces. The initial conceptualising of the double empathy problem was critical of theory of mind accounts of autism and suggested that the success of an interaction partly depended on two people sharing similar experiences of ways of being in the world. This is not to say that autistic people will automatically be able to connect and feel empathy with other autistic people they meet any more than two random non-autistic people would; however, there is greater potential for such, at least in how being autistic (or not) shapes experiences of the social world. An obvious example would be how differing sensory perceptions would impact communicating with others and shared understanding.

While there is much work to be done to explore these issues across multiple disciplines, the concept of the double empathy problem has the potential to aid a reframing of autism itself from a social communication disorder to a description of a broad range of developmental differences and embodied experiences and how they out in specific social and cultural contexts. If this were so, it would lead to a radical change to current diagnostic criteria. This is most important however when considering best practice models for supporting autistic people in a variety of settings. We already know that interpretations about autistic sociality from observations alone may not be accurate ( Doherty et al., 2022; Mitchell et al., 2021). Instead of focusing on perceived social deficits and remediation, the concept suggests a position of humility in the face of difference, the need to build rapport and understanding and not assume a lack of capacity for understanding. Ultimately, the concept reminds us of the social situatedness of the lives of autistic people and those who support them.
The 'double empathy problem': Ten years on - Damian Milton, Emine Gurbuz, Betriz Lopez, 2022

Autism and the 'double empathy problem'

The original published definition of the double empathy problem is as follows:

A disjuncture in reciprocity between two differently disposed social actors which becomes more marked the wider the disjuncture in dispo- sitional perceptions of the lifeworld - perceived as a breach in the 'natu- ral attitude' of what constitutes 'social reality' for 'neuro-typical' people and yet an everyday and often experience for 'autistic people'.
(Milton 2012a, p. 884)

Due to differing qualia of experience, social lifeworlds, dispositional viewpoints and discursive repertoires, interactions between autistic and non-autistic people are vulnerable to breaches in mutual understanding, framed as a 'double problem' as both parties in the interaction will experience a sense of disjuncture, not simply a deficit in the autistic person's mind. Whilst this experience may be novel for many non-autistic people, it is common- place for autistic people. Such a framing would also suggest a greater likelihood of feelings of empathy between autistic people with one another and with those they have close relationships with, yet perhaps over differing elements of their lives.
Autism and the 'double empathy problem'

These studies suggest that stereotyped views of autistic people are likely to contribute to the double empathy problem, and that there may also be differences between people's perceptions of being helpful and actu- ally being so to others.

In recent research by Crompton et al. (2020), the transfer of information between people were studied across a diffusion chain of eight people in total, similar to a game of 'telephone'. When there were only autistic par- ticipants or only non-autistic participants, there was equally good transfer of information. However, when there was a mixed diffusion chain of autistic and non-autistic people, there was a much greater reduction in information successfully passed on.

The evidence is thus building to suggest that the theory of mind deficit theory of autism is indeed 'partial at best' with growing support for the double empathy problem.
Autism and the 'double empathy problem'

Double Empathy: Why Autistic People Are Often Misunderstood

Being autistic affects how people make sense of the world around them, and some autistic people can find it hard to communicate. For a long time, research has shown that autistic people can have trouble figuring out what non-autistic people are thinking and feeling, and this can make it difficult for them to make friends or to fit in. But recently, studies have shown that the problem goes both ways: people who are not autistic also have trouble figuring out what autistic people are thinking and feeling! It is not just autistic people who struggle.
Double Empathy: Why Autistic People Are Often Misunderstood · Frontiers for Young Minds

Practitioner experience of the impact of humanistic methods on autism practice : a preliminary study

We found neurotypical- encounters manifest this double empathy problem, with practitioners displaying limited capacity for neurodivergent intersubjectivity leading to misempathy and lack of relational depth.

This study has demonstrated a need for less focus on remediation and greater focus on shifting practitioner capacity for humanistic relating.
Practitioner experience of the impact of humanistic methods on autism practice : a preliminary study

A Mismatch of Salience

The Problem With Autistic Communication Is Non-Autistic People: A Conversation With Dr. Catherine Crompton

Firstly, we've had a huge amount of first-person accounts and anecdotal evidence that autistic people can find spending time with other autistic people more comfortable and easier and less stressful, and just easier than interacting with non-autistic people. We've heard a lot from people who have said, "once I found more autistic people I thought I had found my community" and this kind of stuff. And we didn't have any empirical evidence to back that at all.

We've got a theoretical framework within the double empathy problem which kind of says a similar thing, in that the problems of interacting and interactions between autistic and people isn't necessarily all down to a deficit on the part of the autistic person. It's more to do with a mismatch in communication style, and mismatch in background.

There is now a growing body of evidence that's looking at double empathy problem matters, but when we started this project we were really keen to try to address these two areas in an empirical and data-driven way, to see whether this is something that we could explore scientifically in a controlled fashion. We were really interested to see if our theories would stand up to empirical tests.
The Problem With Autistic Communication Is Non-Autistic People: A Conversation With Dr. Catherine Crompton - THINKING PERSON'S GUIDE TO AUTISM

The Double Empathy Problem

Whilst it is true that autistic people can struggle to process and understand the intentions of others within social interactions, when one listens to the accounts of autistic people, one could say such problems are in both directions. Theory of autistic minds often seem to leave a lot to be desired, and we would not need organisations like the National Autistic Society trying to spread awareness and understanding of autism if it were so easy to empathise with autistic ways of perceiving and being in the world. From the earliest written accounts of autistic people one can see numerous mentions of this lack of understanding from others. It is this issue of empathy problems between autistic and non-autistic people being mutual in character that led to the development of the 'double empathy problem' as a theory.

Simply put, the theory of the double empathy problem suggests that when people with very different experiences of the world interact with one another, they will struggle to empathise with each other. This is likely to be exacerbated through differences in language use and comprehension. I first started to publish theoretical accounts of this issue in the early 2010s, yet similar ideas can be found in the work of Luke Beardon regarding 'cross-neurological theory of mind' and in that of the philosopher Ian Hacking.

More recently research by Justice, equality, fairness, mercy, longsuffering, Work, Passion, knowledge, and above all else, Truth. Those are my primary emotions.Very Grand Emotions: How Autistics and Neurotypicals Experience Emotions Differently " NeuroClastic Elizabeth Sheppard and team at the University of Nottingham, Brett Heasman at the London School of Economics, and Noah Sasson at the University of Texas at Dallas, have shown that in experimental conditions, non-autistic people struggled to read the https://youtu.be/uPRa6G2a48E... More of autistic participants, or form negative first impressions of autistic people. Such evidence would suggest that the dominant psychological theories of autism are partial explanations at best.

According to the theory of the 'double empathy problem', these issues are not due to autistic cognition alone, but a breakdown in reciprocity and mutual understanding that can happen between people with very differing ways of experiencing the world. If one has ever experienced a conversation with someone who one does not share a first language with, or even an interest in the topic of a conversation, one may experience something similar (albeit probably briefly).

This theory would also suggest that those with similar experiences are more likely to form connections and a level of understanding, which has ramifications in regard to autistic people being able to meet one another.
The double empathy problem

Diversity in Social Intelligence

Our interim findings can be summarised as follows

1. Autistic people share information with other autistic people as effectively as non-autistic people do.

2. information sharing can break down when pairs are from different neurotypes - when there is an autistic and a non- autistic person.

3. Feelings of rapport between people of the same neurotype accompany these information-sharing benefits - autistic people have higher rapport with other autistic people, and non-autistic people have higher rapport with non-autistic people.

4. External observers can detect the lack of rapport apparent in mixed autistic/non-autistic interactions.

In essence, what we are demonstrating for the first time is that autistic people's social behaviour includes effective communication and effective social interaction, in direct contradiction of the diagnostic criteria for autism. We have, for the first time, uncovered empirical evidence that there is a form of social intelligence that is specific to autistic people.
Diversity in Social Intelligence

Neurotype-Matching, but Not Being Autistic, Influences Self and Observer Ratings of Interpersonal Rapport

The Double Empathy Problem suggests that communicative difficulties between autistic and non-autistic people are due to bi-directional differences in communicative style and a reciprocal lack of understanding. If true, there should be increased similarity in interaction style, resulting in higher rapport during interactions between pairs of the same neurotype. Here, we provide two empirical tests of rapport, with data revealing whether self- and observer- rated rapport varies depending on the match or mismatch in autism status within a pair.

In summary, autistic people experience high interactional rapport when interacting with other autistic people, and this is also detected by external observers. Rather than autistic people experiencing low rapport in all contexts, their rapport ratings are influenced by a mismatch of diagnosis. These findings suggest that autistic people possess a distinct mode of social interaction style, rather than demonstrating social skills deficits. These data are considered in terms of their implications for psychological theories of autism, as well as practical impact on educational and clinical practice.

The results indicate that participants, regardless of diagnostic status, give poorer ratings of rapport for mixed neurotype pairs than for matched neurotype pairs. This suggests a mismatch between neurotypes results in lower ratings of rapport, and that subtle verbal and non-verbal cues to rapport are similarly perceptible by autistic and non-autistic individuals. Interestingly, rapport scores were significantly higher for the autistic pairs than non-autistic pairs, indicating that the autistic dyads may display even greater social signals of shared enjoyment and ease when interacting with one another, as viewed by an external observer.

An exploratory comparison between participants' own judgments of rapport and an observer's ratings, suggests autistic participants' self-rating of rapport are more in line with others' ratings of rapport. There was a greater discrepancy between non-autistic participants' estimates of their rapport with a partner compared with observers' rating of the same social interaction.
Frontiers | Neurotype-Matching, but Not Being Autistic, Influences Self and Observer Ratings of Interpersonal Rapport | Psychology

The belief in a theory of mind is a disability

And this is where the neurotypical belief in theory of mind becomes a liability. Not just a liability - a disability.

Because not only are neurotypicals just as mind-blind to autistics as autistics are to neurotypicals, this self-centered belief in theory of mind makes it impossible to mutually negotiate an understanding of how perceptions might differ among individuals in order to arrive at a pragmatic representation that accounts for significant differences in the experiences of various individuals. It bars any discussion of opening up a space for autistics to participate in social communication by clarifying and mapping the ways in which their perceptions differ. Rather than recognize that the success rate of the neurotypical divining rod is based on mere statistical likelihood that the thoughts and feelings of neurotypicals will correlate, they declare it an ineffable gift, and use it to valorize their own abilities and pathologize those of autistics.
A belief in theory of mind makes it unnecessary for neurotypicals to engage in real perspective-taking, since they are able, instead, to fall back on projection. Differences that they discover in autistic thinking are dismissed as pathology, not as a failure in the neurotypical's supposed skill in theory of mind or perspective-taking.
Ironically, constantly confronted with the differences in their own thinking and that of those around them, and needing to function in a world dominated by a different neurotype, autistics are engaged in learning genuine perspective-taking from the cradle on. The perceived failure in that perspective-taking is thus based on the fact that autistics do not rely on and cannot rely on neurological similarities to crib understanding by projecting their own thoughts and feelings onto others.

Thus, if we were to summarize the effect of neurotypicals sitting in wells that are structured in much the same way, delimited in much the same way, oriented in the same general direction and located in the same geographic location, manifested as an unassailable belief in their natural gift of theory of mind, we would have to conclude that this belief in theory of mind severely impairs neurotypicals' ability to perceive that there is sky or even the great sea outside the narrow limits of their purview. It also necessarily impacts their cognitive empathy vis-à-vis autistics and, sadly, their affective empathy as well.

This deficit in neurotypicals needs to be remediated if autistics are to have a chance to participate as equals, because the truth is, in this regard, autistics suffer and are excluded from social communication not because of our own disability, but because of neurotypical disability.
The belief in a theory of mind is a disability - Semiotic Spectrumite

Neurotypical Psychotherapists & Autistic Clients

The 20th Century political scientist Karl Deutsch said, "The 20th Century political scientist Karl Deutsch said, "Power is the ability not to have to learn."I quote this statement often, because I think it's one of the most important... Power More is the ability not to have to learn."

I quote this statement often, because I think it's one of the most important truths ever articulated about privilege, oppression, and social power relations.

When a social system is set up such that one particular group is almost always in a position of social power or privilege over another group, the members of the To not have conversations because they make you uncomfortable is the definition of privilege. Your comfort is not at the center of this discussion.Brené Brown Power can be understood as... privileged More group never truly need to learn or practice empathy or understanding for the members of the disempowered, oppressed group. Nor do the members of the privileged group need to learn to adapt to the communication style of the oppressed group.
Neurotypical privilege means that neurotypical people interacting with autistic people-particularly when the neurotypical people in question are in positions of professional authority-have the luxury of never having to address or even acknowledge their own empathy deficits or poor communication skills, because they can blame all failures of empathy, understanding, and communication on the alleged deficits of the autistic people.
Power-or privilege, as we now more commonly call the particular kind of power to which Deutsch was referring-is the ability not to have to learn. There's a phrase, "check your privilege," that's often repeated but rarely understood or heeded by those privileged persons at whom it is directed. If we start from Deutsch's definition of power or privilege as the ability not to have to learn, we can understand "check your privilege" to mean, at least in part, "Learn! Be quiet, pay attention, and learn. Learn, even though the learning process, and the level of profound humility it requires, is going to be uncomfortable. Learn even though, because of your privilege, this sort of learning and humility is a discomfort that you have the luxury of being able to avoid-a luxury that we didn't have, when we had to learn your ways. Learn even though you don't have to."

Unfortunately, as members of all oppressed groups discover, most privileged people just won't do that. The states of profound mindfulness, humility, openness to correction, and tolerance for uncertainty that such learning demands are too far outside of most people's comfort zones. Most human beings simply won't go that far outside of their comfort zones if they don't have to. And privilege means they don't have to.
NEUROTYPICAL PSYCHOTHERAPISTS & AUTISTIC CLIENTS * NEUROQUEER

(Did you know that? That the reputation of autistic people as lacking empathy literally comes from allistic people lacking empathy towards us? That is some institutionalized DARVO shit that still informs most policy around autism.)The term 'allistic' is a synonym for 'non-autistic'. The term 'neurotypical' is used to describe individuals with typical neurological development or functioning. Notably, this term is not an exact synonym...

The thing is, research like this - serious scientific research into Autism - has historically treated the subjective experiences of its subjects as noise to be filtered out. They all think they can accurately read our emotions if they need to and so don't need to ask us.

But the double empathy problem shows conclusively that that assumption is false. More are as bad at understanding us as we are at understanding them. It goes both ways. This needs to invalidate any research that presumed to determine our internal state from our behavior.
@mykola on Twitter

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Stimpunks Guide to the NeurodiVerse Issue #5: Redefining Autism Science with Monotropism and the Double Empathy Problem

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Monotropism and the Double Empathy Problem are two of the biggest and most important things to happen to autism research. In the previous two issues of the Guide to the NeurodiVerse, " From an Ivory Tower Built on Sand to Open, Participatory, Emancipatory, Activist Research" and " Mental Health and Epistemic Justice ", we tackled some bad trends in autism science.

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AAC stands for Augmentative and Alternative Communication, and it's a term used for all kinds of methods that can be used for communicating other than speech. October is AAC Awareness Month, and last October I wrote a big old blog post about AAC: Basic Facts And Helpful Resources, which is still relevant and informative, but not very succint and to the point. So this October, my plan is to do a few shorter and more focused blog posts about different aspects of AAC - and this is the first one! So:
AAC Apps: Who Are They For & What Is So Great About Them?
Well firstly I should explain what I mean when I say 'AAC apps'. The apps I have in mind are robust communication apps made for use on a device such as iPad or other tablet, with some also available for laptops or smartphones. Many (if not most) of them are iPad versions of designated communication systems that have been created for use with a specific speech-generating device. Some popular examples of AAC apps are TouchChat, CoughDrop, Proloquo2Go, LAMP, and Grid (by Smartbox).

Who Are AAC Apps Useful For?
Anyone who cannot reliably use speech to communicate could benefit from using AAC. This could be a person who cannot speak at all due to disability, injury or other medical condition, but also someone who has some ability to speak, but who isn't able to speak clearly, or who loses the ability to speak in certain situations (often due to extreme levels of anxiety, as is the case for those with Selective Mutism).

There are many forms of AAC, not only apps or other high tech solutions. Things like pen and paper for writing, or body language, signing etc are also forms of AAC. What I'd like to focus on in this post however, are the benefits of AAC apps in particular.

If you have a child who is nonverbal/non-speaking and autistic (as my son is), and perhaps has a learning disability too (just like my son), you might think that they are 'too disabled' to be able to use an AAC app. Some people might actually have told you so. Unfortunately I regularly hear of this happening, even from professionals such as speech therapists or special ed teachers, who I think should know better by now. The fact is that you do not need to be able to use low tech AAC before learning to use high tech AAC. Learning to use an AAC system (whether low or high tech) is a bit like learning a new language, so if you think a person would benefit long term from using an AAC app, then start working on that straight away, rather than first learning 'another language'. To say "learn PECS first, then maybe 'advance' onto using high tech AAC" is wrong. There is no progression hierarchy from low tech to high, so why waste time on learning a less useful system first?
What is so great about AAC apps?:

Using an AAC app, you can say anything to anyone, almost anywhere - The apps come with a very rich and varied vocabulary, and it's easy to add more words or phrases too (accompanied by symbols included in the apps or using own pictures). Robust apps also come with a keyboard feature, so that you can write absolutely any word you'd like to say (provided you're able to write). The apps 'speak' the words for you, so anyone who can hear and understand spoken language can easily understand what you're saying. This is different from some other forms of AAC, such as signing, which relies on the person you are trying to talk to also understanding signing. Another useful aspect is that the iPad (or other device used) has it's own light, so AAC apps can be used in the dark too, just like a spoken voice can, unlike most low tech AAC.

AAC apps are (relatively) fast and flexible - The menus in modern AAC apps make it quick and easy (for the most part) to find the words or phrases that you wish to use. If you make a mistake, you can edit your message almost as easily as when writing text on a computer. It's also possible to store any phrases you use on a regular basis, so that you don't need to compose them again each time, but have them readily available at the push of a button (or two). You can also have pre-programmed phrases for situations where time is of the essence, for example ones relating to health-care or disability-specific needs.

AAC apps enable independent communication - While some forms of AAC rely on a 'communication partner' (such as for example a person holding a letter board, if using 'facilitated communication' or similar AAC methods), the app can be independently used.

AAC apps are readily available and not *that* expensive - The most expensive part of this form of AAC is the iPad (or other device). The apps themselves cost a fair bit too, but some of them are available as monthly subscriptions for around £10 per month, which I think is very reasonable for what they are. If a monthly subscription isn't available for the app you would like, I recommend keeping an eye out for the AAC sales that usually take place twice a year, in early April and early October. Either way, getting an AAC app and an iPad is a lot less expensive that getting the equivalent systems on a designated AAC device. And if you already have an iPad, you can get started today! Some of the apps offer 30 or 60 days for free as well, so you can try them out without cost.

AAC apps give immediate auditory feedback - For many users, hearing the word or sentence can be a positive, as it gives them confirmation that they're actually saying what they've intended to (unlike for example handing over a picture card, where you might make a mistake and not realise straight away). Also, for a non-speaking child, hearing the words might help them develop some speech, as those words are consistently pronounced the same way each time, and they are in control themselves of pressing to hear the words said as often as they wish. And they can choose the words which are of greatest interest to themselves, too. I should also add that using ANY kind of AAC is generally helpful for language development, and is likely to encourage speech rather than slow it down, as some might think.

High tech is fun and motivating for most people (and pretty cool as well) - Motivation is an important key to all kinds of learning, and the fact that most of us find iPads enjoyable to use is another positive for AAC apps. I would also say that using an app to communicate - whether using text to speech or a symbol-based vocabulary - has an element of 'cool' to it, and is more handy in most situations than many low tech options (compare for example to PECS or other systems using printed pictures, which take up a lot of space if you wish to carry a full vocabulary around with you).

Having said all this, I want to add that low tech AAC has some positives too. The main thing being that technology needs recharging, and it can go wrong. Users of high tech AAC usually have some kind of low tech available as back-up, such as laminated printouts of some of the pages from their AAC app, so that they'll still be able to communicate basic things while their tech device isn't available.
Don't just take my word for it!
Who am I to tell you about AAC apps and why you should consider them for the non-speaking or not reliably speaking person in your life? I'm 'just' a mum who has spent a lot of time learning about AAC because of my son being non-speaking. But the points I've been making in this post are ones that I often also see highlighted online by AAC professionals (mainly speech and language therapists with a passion for AAC), so you don't need to take my word for it all! Here are a few posts and articles by AAC pro's, to underline and expand on what I've been saying above:

Next up, here's a short post about High-Tech AAC in general, by an SLP, also debunking some of the common 'myths'/misconceptions. For more myth busters, each of them backed up with links to research, see this page on the Tobii Dynavox website: What is AAC? - Busting AAC Myths

Also, check out this very well-written article by Jane Farrall: Why Are You Using Picture Exchange Communication System (PECS)?

This facebook post links to one of MANY super informative episodes of the 'Talking with Tech' AAC podcast:
To round off, a few words about our 'AAC journey', so far:
We started off with PECS many years ago, and our son got the basics of it straight away, but didn't really get past requesting food and other favourite items, plus some very basic commenting, such as telling me what colour something was. We also tried a mid tech option, in the form of a 'GoTalk' device with twelve buttons, which could be programmed to speak different words/messages. I found both the PECS and the GoTalk to be quite uninspiring methods of communication, and the GoTalk in particular was very restrictive. I'd go as far as saying that these methods, and the GoTalk in particular, actually were a turn-off communication wise for my son, rather than encouraging him to communicate more.

Our high tech AAC 'journey' in the form of apps on iPad has been quite slow an not totally straight forward. We tried two other apps before landing on using the 'SuperCore50' vocabulary setup in Grid for iPad by Smartbox. When we first started, we were living in Sweden and my son was going to school there. They had no experience of high tech AAC at his school, and didn't like the idea of a pupil using an iPad in the classroom. We had very little support in how to get going with using AAC, and didn't really know anything about central concepts such as modelling, motor-planning, or core words. It's only really in the last year or so that I've started to feel more confident about what we're doing and how. And I am still learning. Which is my point here, that I'm trying to get to: There are lots of people out there to learn from! If you can get hold of a speech and language therapist with good knowledge of robust AAC, that's the way to go. Occupational therapists may also be able to help, at least with some aspects. But if you don't have access to great professional help, it is totally possible to go for it on your own, while using online resources to educate yourself (again, referring back to my post from last year: AAC: Basic Facts And Helpful Resources). I feel quite strongly about spreading better knowledge about AAC, as I believe my son's communication development could have been greatly helped if we'd figured out more suitable AAC for him at an earlier age. We are where we are, and I'm happy for what we now have. But I wish to encourage and empower parents with younger children to not sit and wait, not take the 'scenic route' via less robust AAC options (such as PECS), and to not feel intimidated by either technology or professionals. Presume competence, and go for it! There is very little to lose and potentially so much to gain!

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Thank you so much for reading! If you have any comments, reflections or questions after reading this post, please let us know below! Maybe there are some relevant pros or cons that you think I've left out, our perhaps you have some experience of AAC to share with us? I really appreciate hearing from our readers and usually respond to all comments. We can also be found on instagram, facebook, twitter and pinterest - just look for Sensational Learning With Penguin and you'll find us there (or go via the social media icons elsewhere on this page) x

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Malin - Sensational Learning with Penguin

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AAC Apps: Who Are They For & What Is So Great About Them?

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AAC stands for Augmentative and Alternative Communication, and it's a term used for all kinds of methods that can be used for communicating other than speech. October is AAC Awareness Month, and last October I wrote a big old blog post about AAC: Basic Facts And Helpful Resources, which is still relevant and informative, but not...

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Supporting multi-modal communication: for Autistic children & young people

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Supporting multi-modal communication: for Autistic children & young people

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T﻿his course will provide professionals (specifically Speech and Language Therapists) an overview of multi-modal communication and AAC. We will focus on the communication environment and how to create affirming, inspiring communication environments for Autistic children, young people, and adults. We will look at the challenges and barriers in achieving environments that presume competence and how best to work with others.

T﻿opics

Factors that make communication difficult for Autistic people e.g., fatigue, sensory overload, motor disinhibition

F﻿orms of multi-modal communication

T﻿erminology and language preferences

A﻿AC myths

A﻿AC research

I﻿ntroduction to AAC assessment and implementation

K﻿ey considerations for Gestalt Language Processors (GLPs)

T﻿here will be a recording available so don't worry if you can't make it to the live event, and you will receive the presentation slides.

Y﻿our trainers

Elaine McGreevy (she/her) has worked as a Speech and Language Therapist for 26 years, and has been a Lead Clinician since 2001. Elaine has been involved in setting up and developing Speech and Language Therapy services for Autistic children and young people. Elaine offers pro-neurodiversity Speech and Language Therapy through non-behavioural based, empathic approaches. Elaine wants to contribute to making a change in how society accepts and supports Neurodivergent people, especially Autistic children and young people.

Emily Lees (she/her) is a proudly Autistic Speech and Language Therapist who supports Autistic children, young people, and adults. Emily does not provide behaviourist social skill interventions which are based on outdated research claiming that Autistic children have social impairments. Through her lived experience, Emily campaigns for radical changes in therapy practices that encourage Autistic people to embrace their stimming, interests, and authentic communication.
Twitter: @DivergentSLT W﻿ebsite: www.divergentperspectives.co.uk

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supporting multi-modal communication: for autistic children & young people

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supporting multi-modal communication: for autistic children & young people tickets

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Supporting multi-modal communication: for Autistic children & young people

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T﻿his course will provide professionals (specifically Speech and Language Therapists) an overview of multi-modal communication and AAC. We will focus on the communication environment and how to create affirming, inspiring communication environments for Autistic children, young people, and adults. We will look at the challenges and barriers in achieving environments that presume competence and how best to work with others.

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The AuDHD Burnout to Psychosis Cycle- A deeper look

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The AuDHD Burnout to Psychosis Cycle- A deeper look

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Creating Autistic Suffering: The AuDHD Burnout to Psychosis Cycle- A deeper look

Monotropism is a theory of autism. It is used interchangeably as a theory and also a trait that describes a style of attention. It suggests that Autistic people tend to have singular but highly detailed tunnels of attention, as opposed to spreading their attentional resources across multiple subjects ( Murray, Lesser & Lawson, 2005). It has succeeded where other theories have failed by offering an explanation for every element of Autistic experience. In this sense monotropism is the only universal theory of autism.

One could consider it the "engine" of Autistic experience. Whereby every other part of Autistic experience can be traced back to monotropism in some way. It is at the core of our experience.

Emerging research is showing that both Autistic and ADHD people strongly identify with many aspects of monotropism as a way of describing their experience ( Murray & Hallett, 2023). More on this can be found at this virtual presentation. It comes as no surprise then that monotropism is of significant importance to those who identify as both Autistic and ADHD, termed AuDHD.

Psychotic phenomena is another shared experience for many Autistic and/or ADHD people. 34.8% of formally identified Autistic people have experienced psychosis with up to 60% of Schizophrenic people also showed traits of autism ( Ribolsi et al, 2022), In terms of the cross-over with ADHD, 47% of those diagnosed with childhood onset of schizophrenia experienced attention differences and hyperactivity in childhood, and in a sample size of 100 adults with psychosis, 32% reported attentional differences in childhood ( Levy et al, 2015).

From this we can see that there is a significant overlap between the AuDHD experience and psychotic phenomena. When we look at this through the lens of monotropism, it begins to make more sense.

Monotropic Split
Monotropic split refers to a very specific type of attentional trauma experienced by monotropic people who are regularly exceeding their attentional resources ( Adkin, 2022) in an effort to meet the demands of living in a world designed for non-monotropic (polytropic) people. It inevitably leads to burnout.
Atypical Burnout
Autistic burnout refers to a state of exhaustion created by using up all of your internal resources.

"Autistic burnout is often used by autistic adults to describe a state of incapacitation, exhaustion, and distress in every area of life. Informally, autistic adults describe how burnout has cost them jobs, friends, activities, independence, mental and physical health, and pushed them to suicidal behavior."
Raymaker et al (2020)

Because Autistic burnout is described as a state of exhaustion, one would assume, that for many Autistic people observationally it can look like depression, and as such tools are being developed to differentiate between the two. However, exhaustion does not always mean that you are bed-bound, observably tired, and, indeed, displaying observable traits of depression. Many people with depression do not fit typical criteria, which is then referred to as high-functioning depression (useful!).

This is likely because the medical model has some sort of obsession with observable, diagnosable, traits. Many Autistic people are unable to stop and burnout. This may be because they are also ADHD, they may have interoceptive differences resulting in alexithymia and a lack of recognition of tiredness. They may simply have to work or raise children.

This may look like meerkatting and hypomanic behaviour ( Adkin & Gray-Hammond, 2023) in addition to loss of skills and reduced tolerance to stimulus (Raymaker et al, 2020).
Meerkatting

Lovingly dubbed "meerkat mode" by Tanya due to the heightened state of vigilance and arousal it presents, it involves constantly looking for danger and threat. It is more than hyper-arousal, Tanya believes that it is actually an overwhelmed monotropic person desperately looking for a hook into a monotropic flow-state.

This is not just sensory hyper-arousal, it is the tendency of monotropic minds to seek out a natural and consuming flow-state to aid recovery from burnout and/or monotropic split. Because of the heightened sensory-arousal and adrenal response that comes with it, monotropic flow becomes difficult to access, leading into monotropic spiral.
Monotropic Spiral
Tanya's original concept of Monotropic spiral results from the inertia of monotropic flow. It may involve obsessive-compulsive type occurrences of rumination about a particular subject of experience that pulls the person deeper and deeper into an all-consuming monotropic spiral. Associative thinking that starts connecting this to anything and everything, seemingly like an ever increasing black-hole (Adkin & Gray-Hammond, 2023; Gray-Hammond & Adkin, 2023).

This can lead to the development of apparent loss of insight into ones own mental state and reality as described by the general population.
Psychotic Phenomena
Monotropic spiral is not psychosis. It is rather the vehicle that carries the person into psychotic phenomena, and maintains its inertia. Much like a star collapsing on itself, the resultant black-hole sucks in everything in its vicinity and is all-consuming.

A person experiencing monotropic spiral may lose insight and their sense of Self, compounded by a decoupling from shared reality. People can experience hallucinatory events, especially when alexithymic, making it difficult to differentiate between external sound and one's own internal monologue. We can experience paranoia and rejection sensitive dysphoria to the point of delusion, it's unclear where the line between this and fully fledged psychosis lies. We can also experience catatonic events and extreme lability of our mood, ranging from suicidally depressed to overtly manic and elated.

This may be why criteria for conditions such as schizophrenia and bipolar are so frequently met in the psychiatrists office. In a world that traumatises us by design, these phenomena may not be as atypical as we are led to believe.
Concluding thoughts
Are we looking at three separate occurrence that commonly happen together, within an observational model? Or are we looking at chronically stressed and burned out monotropic people, that due to the infinite possible interactions with an individual person's environment, may observationally appear distinctively different?

Perhaps then we should stop thinking in terms of:

Autistic person + Environment = Outcome

instead considering:

Monotropic person + Environment = Outcome

Chronic stress or stressful life events have long been studied as a key contributing factor for the onset of psychotic phenomena ( Philips et al, 2007) but the occurrence and impact of stress for monotropic people is vastly different, but it is not yet widely understood. This is because of the lack of training and rampant neuronormativity in mental health services ( Gray-Hammond & Adkin, 2022); the antidote to which is neurodivergence competence ( Gray-Hammond & Adkin, 2023).

Instead, we keep throwing money in the wrong direction and leaning on carcerative care to make the problem go away. If we can't see it, it doesn't exist, right? Seems to us like we should just fix the environment. Maybe that's our "rigid" black and white thinking.
References
Adkin, T. (2022) What is Monotropic Split? emergentdivergence.com

Adkin, T. & Gray-Hammond, D. (2023) Creating Autistic Suffering: What is atypical burnout? emergentdivergence.com

Gray-Hammond, D. & Adkin, T. (2023) Creating Autistic Suffering: CAMHS kills kids. emergentidvergence.com

Gray-Hammond, D. & Adkin, T. (2022) Creating Autistic Suffering: Neuronormativity in mental health treatment. emergentdivergence.com

Gray-Hammond, D. & Adkin, T. (2023) Creating Autistic Suffering: Autistic safety and neurodivergence competency. emergentdivergence.com

Levy, E., Traicu, A., Iyer, S., Malla, A., & Joober, R. (2015). Psychotic disorders comorbid with attention-deficit hyperactivity disorder: an important knowledge gap. Canadian journal of psychiatry. Revue canadienne de psychiatrie, 60(3 Suppl 2), S48.

Murray, F. & Hallett, S. (2023) ADHD and monotropism. monotropism.org

Murray, D., Lesser, M., & Lawson, W. (2005). Attention, monotropism and the diagnostic criteria for autism. Autism, 9(2), 139-156.

Phillips, L. J., Francey, S. M., Edwards, J., & McMurray, N. (2007). Stress and psychosis: towards the development of new models of investigation. Clinical psychology review, 27(3), 307-317.

Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., ... & Nicolaidis, C. (2020). "Having all of your internal resources exhausted beyond measure and being left with no clean-up crew": Defining autistic burnout. Autism in adulthood, 2(2), 132-143.

Ribolsi, M., Fiori Nastro, F., Pelle, M., Medici, C., Sacchetto, S., Lisi, G., ... & Di Lorenzo, G. (2022). Recognizing psychosis in autism spectrum disorder. Frontiers in Psychiatry, 13, 768586.

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Creating Autistic Suffering: The AuDHD Burnout to Psychosis Cycle- A deeper look - Emergent Divergence

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This article was co-authored by Tanya Adkin and David Gray-Hammond Monotropism is a theory of autism. It is used interchangeably as a theory and also a trait that describes a style of attention.

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Dr Damian Milton is an author, consultant, Lecturer in Intellectual and Developmental Disability at Tizard Centre, University of Kent and chair of the Participatory Autism Research Collective (PARC). Here Damian discusses the theory of double empathy and the implications for practice.
"...right from the start, from the time someone came up with the word 'autism', the condition has been judged from the outside, by its appearances, and not from the inside according to how it is experienced."
(Donna Williams, 1996)

Alongside 'restrictive interests and behaviours', the diagnostic criteria state that autism can be defined by deficits in social interaction and communication. From the position of the non-autistic onlooker, autistic people can seem to have an impaired understanding of social life and other people. Such ideas are embedded within dominant psychological theories that attempt to explain autism as pathology, a deviance from normal development and cognitive functioning. Prevalent amongst these is the concept that autistic people have impaired 'theory of mind' - the ability to imagine the thoughts and feelings of others, in order to comprehend and predict their behaviour (also called 'mind-reading' and 'mentalising').

Whilst it is true that autistic people can struggle to process and understand the intentions of others within social interactions, when one listens to the accounts of autistic people, one could say such problems are in both directions. Theory of autistic minds often seem to leave a lot to be desired, and we would not need organisations like the National Autistic Society trying to spread awareness and understanding of autism if it were so easy to empathise with autistic ways of perceiving and being in the world. From the earliest written accounts of autistic people one can see numerous mentions of this lack of understanding from others. It is this issue of empathy problems between autistic and non-autistic people being mutual in character that led to the development of the 'double empathy problem' as a theory.

Theory of double empathy

Simply put, the theory of the double empathy problem suggests that when people with very different experiences of the world interact with one another, they will struggle to empathise with each other. This is likely to be exacerbated through differences in language use and comprehension. I first started to publish theoretical accounts of this issue in the early 2010s, yet similar ideas can be found in the work of Luke Beardon regarding 'cross-neurological theory of mind' and in that of the philosopher Ian Hacking.

More recently research by Elizabeth Sheppard and team at the University of Nottingham, Brett Heasman at the London School of Economics, and Noah Sasson at the University of Texas at Dallas, have shown that in experimental conditions, non-autistic people struggled to read the emotions of autistic participants, or form negative first impressions of autistic people. Such evidence would suggest that the dominant psychological theories of autism are partial explanations at best.

According to the theory of the 'double empathy problem', these issues are not due to autistic cognition alone, but a breakdown in reciprocity and mutual understanding that can happen between people with very differing ways of experiencing the world. If one has ever experienced a conversation with someone who one does not share a first language with, or even an interest in the topic of a conversation, one may experience something similar (albeit probably briefly).

This theory would also suggest that those with similar experiences are more likely to form connections and a level of understanding, which has ramifications in regard to autistic people being able to meet one another.

Putting theory into practice

The scope of the theory has broad ramifications for practice. The theory not only takes into account differing cognition and interests, but the social context within which interactions take place. The theory has the potential to radically shift how we see autism and therefore autistic people. In doing so, there are also ramifications for practice and what one is trying to 'intervene' with. Attempts to reduce autistic 'symptomology' may not lead to increased wellbeing, and the lack of understanding and resultant stigma felt by autistic people in social environments can then impact upon mental health, employment, accessing education and services, and experiences of the criminal justice system. In short the downside of the double empathy problem is minorities being socially marginalised.

The concept of the double empathy problem has already influenced training programmes for the National Autistic Society and the ATLASS training run by Studio3 and the Synergy program developed by AT-Autism. Further work is needed to evaluate these programs, looking at both the perspectives of autistic people and practitioners. Expanding research into this area would potentially improve our understanding, and lead to more respectful interventions that can ameliorate the negative social consequences that can arise from the double empathy problem.

Further reading

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Dr Damian Milton is an author, consultant, Lecturer in Intellectual and Developmental Disability at Tizard Centre, University of Kent and chair of the Participatory Autism Research Collective (PARC). Here Damian discusses the theory of double empathy and the implications for practice.