This is a question that’s asked over and over but actually, when you dig beneath the surface, it’s actually very rarely answered.
(This article was reviewed and significantly updated in 2024)
‘What is Autism?’ is a question that’s asked over and over but actually, when you dig beneath the surface, it’s actually very rarely answered.
Most charities and professionals will say something like this: “Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.”
This quote was taken from the UK’s National Autistic Society, but most professional bodies, charities and texts will have a variation of this, if they haven’t directly copied it from the National Autistic Society (this happens a lot).
It’s nice and succinct but what this doesn’t do is actually tell you what Autism is. At all.
Most definitions, like this one, are very wrapped up in clinical, deficit based ideals that actually don’t explain the ‘what’, they just explain what Professionals ‘see’, but they don’t actually give you the answer.
One could argue that it’s never answered properly because nobody knows – but that really isn’t the case either.
The simple answer is this: Autism is the name given to a human neurological system.
This article is included in my book, ‘Autism: A Collection of Essays’ along with 16 other essays from my blog. Including a new introduction, preface and a Foreword from Dr Amy Pearson. Find out more here; Autism: A Collection of Essays
The Human Neurological System
The human neurological system looks like this:
Yes it’s a scary photo. And yes those are eyeballs!
This is actually (we think) a lady called Harriet Cole, who it is believed donated her body to medical science in the 1880’s (though the proof of whether this was a donation and whether it is someone called Harriet Cole is a little sketchy).
Whether this is Harriet, or not, this is a human nervous system and brain laid out in whole, which is helpful to remind us that what we commonly think of as the brain, is not just held within our skulls, but actually extends out into every part of our body.
Our brain literally covers our whole body.
Neurology itself is the process of the body taking in information through the senses, translating that information into electrical impulse messages, passing it around the nervous system to the brain, where it is translated, passed onto the correct area and the brain then tells the body to act accordingly.
In a very basic way it’s about input and output.
Can you point to the autism in the picture please?
You can’t. Not just because the person may not be Autistic, but because it’s not something you can see.
There have been historically and problematically lots of claims that you can see ‘autism’ on scans, in tests, in genetic markers. None of this images or announcements ever amount to much. The (usually PET) scans are all contextless and devoid of control groups. There is no consistent measure of whatever the activity is, it’s a little picture of a brain doing something. It isn’t ‘autism’.
There is another problem with this, and that problem highlights one of the most confusing and shocking things you will ever read me write (I do love to say this out loud in training and hear the sharp intake of breath when I do):
“This is all futile, because there is no such thing as autism.“
The horror, the repulsion, the distinctly ableist thoughts of “I knew it!” are all amusing for me to witness.
How can an Autistic person, someone who trains, who writes, who teaches, who consults, who advocates, possibly say that?!
Because there is a vast difference between autism and being Autistic.
One is a diagnostic construct, the other a very real human experience.
What does that mean?!
‘Autism’ is made up. It’s a construct created based on a collection of observed human behaviours distilled down into a very small criteria. A type of box within which to place a human being inside.
It’s limited, contextless, and incredibly problematic.
Let’s take a look at the diagnostic criteria in the current version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR):
(I appreciate this image is full of dense text and hard to read; the point of the image is to illustrate how often words like repeititive, restricted, disorder, limited, impairments, severity etc are used within the DSM).
Outside of clinicians, not many people actually look at what’s written within it. I’ve highlighted some words in red for you to pick out. Lovely aren’t they. What a humane way to describe a human being. If ever you’d like to know the root of stigma around autism, this page of the DSM is a good place to start. I would actively describe this as a disgusting way to define a human being.
Most of the diagnoses in the DSM are written like this. Its purpose is to define the ways in which humans aren’t perfect, how they are disordered, how they experience deficits in being human, how their condition (which means the same thing as disorder by the way) of sub-humanness needs to be fixed. Yes, I’m using strong language here, but I’m using it deliberately to highlight the problematicness of it and how these diagnostic criteria are constructed.
So what does this all mean?
Specifically autism is an idea, and it’s an idea used in multiple different ways by multiple different people:
1. Clinically/Diagnostically it means exactly what is written in the image above.
‘Autism’ is identified across the range of ‘deficit’ behaviours exampled. The more obvious those ‘deficits’ are, the more likely a diagnosis. But the interesting thing is that those defining examples are as narrow (focused on very specific behaviours) as they are broad (those behaviours can be indicative of many things), so to diagnose autism based on these definers means that the process is quite arbitrary, mostly captured through observation, conversation and reports from (if a child) professionals such as Teachers who often have a very limited knowledge and understanding of what they are observing; and (for children and adults) some (problematic) diagnostic tools such as the ADOS or other measures.
Sometimes the difference between diagnosed or not might depend on the knowledge and biases of the diagnostician.
2. In terms of research? Well it depends on the research…
Many genetic researchers hang their hat on the diagnostic criteria like it’s a concrete definition and go to the ends of the earth to have all sorts of ‘aha’ moments, that ultimately don’t stand up to scrutiny, because the lived reality of a person is incredibly different to the diagnostic construct. Equally, the search for genetic markers is also problematic because autism is diagnosed behaviourally, not genetically. There is no ‘autism gene’, there is no one gene that connects to one ‘behaviour’, and there are no two Autistic people that express behaviours that manifest in identical ways.
Some psychological researchers also hang their hats on the diagnostic criteria as though it’s a concrete description of an identifiable thing that you can look at, pick up, take apart and dissect. Others recognise ‘autism’ as an umbrella term for a whole cluster of experiences related to a whole cluster of different things. Some subscribe to very outdated and limited theories such as theory of mind and the triad of impairments, others subscribe to more contemporary, Autistic-derived concepts such as Monotropism and broader concepts such as Neurodiversity.
3. What about in the professional world outside of clinicians?
Well it depends on who you talk to…
Most (and I use that term definitively) professionals either recognise they don’t have a clue when it comes to Autistic people (but often still do that professional thing of pretending like they do) or are certain they have an absolute idea about what they are doing and the constructive impact of what they do (usually based on outdated notions and concepts.
Organisationally, particularly in health, social care and educational settings, there isn’t a day that goes by where I don’t see totally out of date training being delivered, usually modelled on extremely outdated and dehumanising concepts, such as the Triad of Impairments, and usually focused on looking at Autistic people through a behaviour-change lens because of all the deficits we show in being neurotypical. So people and organisations working with people who have been made vulnerable by sometimes decades of trauma, ‘supporting them’ using a completely incorrect model of their existence. How meaningful is your support for someone if everything you know about how the person you support exists as a human being is based on a concept that they don’t work properly, aren’t complete human beings, and that they need to be managed and controlled while we work on making them as far away from who they are as possible, and closer to an ideal that the supporters hold that makes the supporters deem acceptable…
Autistic people in these settings are dehumanised and devalued, and the people holding them within these settings stand around scratching their heads as to why the dehumanised and devalued people struggle under their ‘care’…
Frankly, it’s a mess.
The Mess of Autism
It’s a mess that frequently platforms people or organisations who define themselves as, or allow themselves to be defined as ‘experts’ – prominent professionals, researchers, charities, etc.
Unless you are completely new to this, I don’t have to name names for you to recognise which organisations and professionals carry strong reputations in the field globally. The majority of those known by everyday people will be problematic in some way, either through gatekeeping, perpetuating terrible and superficial narratives, or both.
If you do need some help identifying problematic people, you can look at the links at the bottom of this article, or visit the following articles: “One day they will join us in the sun”, “Awareness, performativeness and irony in the autism narrative”, “Spectrum10K, Autism, Autistic people and the controversy of SBC”, “An open letter to the Royal College of Speech and Language Therapy (RCSLT)”, “Autism Speaks and it’s influences on the UK (and the world)”, “The curious case of the National Autistic Society and ‘cures’”, and/or do some of my training – I could go on, but I won’t (I’ve written extensively around this issue).
For many professionals and parents/carers autism is a concrete thing. A thing you ‘have’.
Professionals are often not supported or educate well enough to understand ‘autism’ in anything more than a superficial way, even those that work directly with Autistic children and/or adults. The training they receive, if any, is often from equally uninformed professionals and usually very outdated, pathologising and problematic in many ways.
I used to use this statement a lot in training:
“The current culture of Autism is that Professionals observe Autistic people, Professionals decide what Autistic people need, Professionals train other Professionals, Professionals apply the Services; and then Professionals pat each other on the back and tell each other what a good job they’ve done.”
If such a good job was being achieved, the life outcomes of Autistic people, which are statistically dire across any life outcome you’d care to pick for a human being, would look very different.
Parents/carers are not supported well enough to understand, nor are they supported well enough to navigate many of the systems around them that we are all taught to rely on and assume they know what they are doing. Many parents/carers are trapped between two worlds of wanting the best for their children (which often involves following a deficit/change narrative) and knowing their children aren’t a problem (following a more inclusive/affirming narrative).
Too often there is a wish that if my child weren’t Autistic then they would not be facing those problems. There is often a similar narrative in professional circles, which is why there is often such an insistence on ignoring the barriers faced by Autistic children, or perversely trying to drag Autistic children through systems pretending that they aren’t Autistic.
While it is true on one level that if Autistic people didn’t exist they wouldn’t face the barriers they do, on another level look at how eugenical that truth is. If it is easier that a group do not exist because they cause society problems is a really poor reflection on that society. It’s also problematic on a another level. Autistic people DO exist, wishing we weren’t here is not helpful. For any parent out there, if your child weren’t Autistic, they wouldn’t be your child. You are wishing that they were erased and replaced with someone else, whether you mean it or not. I say that not to make you feel guilty – as a parent of three Autistic children with varying support needs, I consistently struggle with the barriers faced by my children – I recognise though and lean into the fact that my children aren’t the problem, no matter what their needs are or how hard those needs may make my life. The barriers are predominantly created by stigma, bigotry, ignorance, and an unwillingness to be inclusive. That’s not their fault.
It is also an erasure of their identity, of which being Autistic is a major facet of (whether you agree with that or not, does not negate it as a fact), but more on that later, as considering being Autistic as an identity requires a nuanced and meaningful exploration, and I have something else to add here first.
Let’s debunk some things about autism the construct, before we move onto what being Autistic means:
There is no ‘test’ for autism
Why? Because not only does ‘autism’ only exist as a construct, there are also a phenomenal number of genes which go into all the different human behaviours, which exist in all humans but sometimes are perhaps more obvious in Autistic people. When something is observed observationally and is incredibly subjective and arbitrary, identifying that through a blood test, or through genetic testing is impossible. Especially when we factor in that for Autistic people all sorts of other things are co-occurring, and all sorts of further other things are experienced. For instance there are over 75 commonly occurring other differences that can exist within Autistic people, not just the common ones like dyslexia, ADHD or Dyspraxia, but all sorts of other mundane, weird and wonderful things that equally commonly go unrecognised.
We also have to account for stigma-based trauma, something being more and more recognised through the narrative of Autistic masking and interpersonal victimisation.
We have to account for sensory differences – unique to each human and even more unique to each Autistic person and remarkably only mentioned as a brief line in the diagnostic criteria (in section B above).
We also have to account for intersectional experiences such as race, ethnicity, culture, age, gender, sex, sexual orientation, other disabilities and so much more.
AND we have to account for the unique life experiences of each person, their upbringings, their beliefs, their family’s ‘norms’, their traumas.
All of this is also why:
There is no such thing as the Autistic Spectrum
The concept of the spectrum, no matter what your interpretation of it, is ridiculous.
If you’ve never accounted for all the interactive non-autism related factors I’ve just described above, then the ‘surprise’ that all Autistic people are different says a lot about your lack of reflection.
If we’ve never done that historically (which we haven’t) then that distinctly highlights how problematic the evolution of autism has been as a both a diagnostic construct and a concept – that Autistic people have never been considered as whole human beings, only the problematic construct of ‘autism’ has been focused on, excluding the person.
Instead we just came up with a whole bunch of different diagnostic labels, because lots of people didn’t fit into one box that we didn’t want to expand upon or evolve (That’s really bad science by the way).
If you look at it as a straight line of functioning, from ‘low’ or ‘severe’ to ‘high’ you have fallen into a trap described in detail here: “An Autistic identity”
Of course Autistic people are all different, because like with every other human on the planet we are all completely unique. When we get caught up in the diagnostic model, we often become fixed and rigid and limited in our ability to recognise that person’s unique identity and all the things that makes them. But in our attempt to try and see them, we often go to the other extreme, denying the fact that they are Autistic, we don’t see that being Autistic is the driving factor underneath their whole identity.
What does that mean?
We’re back to neurology
Remember that earlier definition of neurological process?
“Neurology itself is the process of the body taking in information through the senses, translating that information into electrical impulse messages, passing it around the nervous system to the brain, where it is translated, passed onto the correct area and the brain then tells the body to act accordingly.”
Autistic neurology does this process slightly differently to what has been historically defined as typical neurological systems, in that Autistic neurology sensory information is utilised completely differently. Why? Well, there may be an explanation for that. Keep reading…
Due to that information being utilised differently, this can mean differences in how long it takes to process, differences in how the information is processed and understood, and differences in how the brain responds to the information it’s deemed important or relevant. So on a psychological, biological, behavioural, communicational and emotional level, you can expect an Autistic person to surprise you – if you’re expecting normative responses that is.
I’m perpetually perplexed as to the logic of people who give someone a diagnosis based on their identification of difference, and then are surprised when that person presents differently… There is no sense or logic in that for me at all.
Autism as a construct is something thought up, argued about, and defined mostly by people without an internal experience of being Autistic. I find it much more useful to talk about Autistic experience rather than ‘autism’. But if I had to put up a definition of ‘autism’, some people have already come up with some good explainers:
Steve Silberman, the Author of Neurotribes: The Legacy of Autism and the Future of Neurodiversity used this analogy:
“A Neurotypical brain runs on Windows, an Autistic brain runs on iOS, neither is broken, they just work differently”
It’s an imperfect metaphor, superficial in many ways – but useful in others, it shows there are significant differences in experience, but often we fail to take a step further and consider what those differences really mean, and neurologically, well we may just have the answer to that question… (It’s coming, I promise!)
Traditionally these differences have been seen as deficits or as something wrong, simply because there is an assumption that what is seen as the typical way to do things is the correct way to do things.
As I described, Autistic experience has been viewed through a medical lens for a very long time, understanding has changed immensely, but the outdated and misinterpreted social and cultural notions of what Autism is still perpetuate, as much in the Professional world as they do in the outside world.
The world we live in has begun to question many of the beliefs that we, in our hubris, previously took to be solid facts. We’re now realising that many of our beliefs are fundamentally not solid fact at all – this includes ideas about Autism and the historical professional reasoning that things can be typical. That ‘normality’ and bell curves are a lie we’ve been sold.
As Dr Amy Pearson, Assistant Professor of Developmental Psychologist and Lecturer of Psychology at Durham University says:
“The idea of typicality is a statistical one, based on the assumption that there is an ‘average’ way of thinking or being. Attachment of the label ‘impaired’ to anything outside of this average is a misnomer- we don’t say that people who run below the ‘average’ speed are impaired.”
It’s now starting to be understood by more forward-thinking researchers that previous ideas about what we think about the world is based on fallacies and constructs mostly developed from research via what Psychology identifies WEIRD (the tendency to over-rely on participants from Western, educated, industrialized, rich, and democratic countries) and ideologies driven by academics who are over-represented historically by white, middle-class, non-disabled, (openly) straight men, often influenced by Abrahamic religions, and deeply influenced by capitalistic-style societal norms and ideas. Very thin slices of human experiences.
What we think about Autism, much of which prevails in current thinking and is very much the narrative loose in the world, is very mired in old stereotypes. The diagnostic criteria is very narrowly defined, deeply flawed and greatly assumptive. The diagnostic process is hugely subjective. Too many adults and children are denied recognition and appropriate support simply because decades of research has been built on effectively a foundation of sand.
The Neurodiversity Paradigm has helped us reframe much of this and given us a new and humanistic frame of refence of how to understand how human beings work and the negative impact of societal norms and expectations.
So much of what is done in the name of support for Autistic people is based on what I describe as neurological imperialism, the imposition of one experience other another. This was a term I first used several years ago when discussing social skills training when utilised with Autistic children and adults, that social skills training is literally the imposition of a majority neuro-culture’s ideals, beliefs and will, another a minority neuro-culture. These interventions, that exist in speech and language, mental health therapies and other fields, designed to, or based on the expectation that, Autistic people should be led to be less Autistic, and therefore more palatable for a typically focused society. Rather than reducing barriers we exclude until someone changes. Until someone projects a more acceptable version of themselves. (For more on that you can read my work on Autistic Masking and the role stigma [plays in Autistic identity development).
Context is a wonderful thing, it allows us to make more educated choices and definitions, but sadly, in the world of Autism much of the context has been and is still missing, too many Professionals are still caught up in old ways of thinking and discuss theories which have long been discredited and thrown out like they are still current thinking.
Our understanding of what is at the heart of being Autistic is changing, evolving and developing continuously. The 5 minute video below is an excerpt from an interview I did with Meghan Ashburn, who runs a brilliant blog called ‘Not an Autism Mom‘ and a Facebook page by the same name, which explores this a little.
Autism at its core?
Meghan asked me what autism is at its core. What would it look like if you stripped away the co-occurring conditions? Here’s my answer:
If I had to define autism in a sentence, I would say nothing more than “It’s an observational construct used to pathologise people on the basis of misunderstood human behaviour”
The problem is that you cannot define the broad experience of an enormous group of people under one word, in one sentence, on one page even. In the same way that, if I asked you to define ‘non-autism’, what would you say?
Autistic experience, separately, can be somewhat summarised around shared and relatable experiences:
- There is a generalised Autistic experience around being misunderstood by non-Autistic people, and struggling to interpret non-Autistic people in terms of communication and social motivations and needs
Please see: The Double Empathy problem - There is a generalised experience around common co-occurring conditions such as ADHD, Elhers Danlos Syndromes, Dyspraxia, Dyslexia and many, many more.
Please see: The Inside of Autism
- There is a generalised experience of what might be termed a spiky profile – sometimes extremely high proficiency in certain things and less proficiency in others.
Please see: Spiky Profiles - There is a generalised experience of more obvious sensory experiences and reactions to sensory information.
Please see: The Inside of Autism and Interoception and Monotropism: Paying attention to Autistic and ADHD experiences - There is a generalised experience around not being able to communicate emotional states, not having the correct language to name emotions, or feeling emotions to such an extent (either you own or other people’s) you become overwhelmed or switch off from them.
Please see: The Inside of Autism and Lost connections: the relationship between interoception and Masking - There is a generalised experience of meltdowns and shutdowns, of dissociation.
Please see: Meltdowns, Shutdowns & Autistic Burnout in Autistic Children & Young People in Education Settings, and Avoiding Meltdowns & Shutdowns, and Meltdowns and Shutdowns: Aucademy educates - There is a generalised experience of having a very complicated relationship with speech, either being non-Speaking, minimally speaking, minimally speaking at times, or being hyperverbal.
Please see: theautisticadvocate.com/onlinelearning/ - There is a generalised experience of stigma-driven negative experiences cumulating across the life span – usually framed around injustices, invalidations, trauma and abuse.
Please see: theautisticadvocate.com/onlinelearning/ - There is a generalised experience of stimming.
Please see: Kieran Rose on Stimming and Senses, An Autistic frequency, and a lot more resources from Reframing Autism - There is a generalised experience of suppressing and projecting behaviours in order for others to find you acceptable and expected Masking and burnout.
Please see: Free resources and links around Masking and Burnout
If I *had* to define Autistic experience in a definitive way…
And this is the answer you’ve all been waiting for folks!
I would point to Monotropism as it.
Monotropism
So what does that mean?!
Before I explain what Monotropism is, I need to point out that not everyone would agree with me. But there may be reasons for that that even those who disagree may not fully know.
Like with many things related to being Autistic, there are a LOT of misconceptions and misunderstandings of monotropism.
Of those who have heard the term, usually the understanding of monotropism is entry level and often conflated merely with hyperfocus and special interests.
But that isn’t all that monotropism speaks to. More definitively monotropism is all about attention. Indeed the original theory of monotropism paper published by Murray, Lawson and Lesser in 2005, spoke explicitly to attention and interests. The concept of monotropism has, in practice, not evolved a great deal from it’s original space – designed to offset against the triad of impairments and using an inside out perspective (as popularised by Donna Williams) rather than the predominant medical and behaviouralised outside-in perspective, as a theory of Autistic experience it was ignored for a long time.
Hmm… Why would a theory derived by Autistic people, commonly seen as incompetent witnesses to our own experiences, that stands up against the most dominant theories around Autistic experience, have been ignored? I wonder. It’s not like there’s a multi-billion dollar autism industry out there that relies mostly on deficit narratives… There’s little money in humanising, but lots in dehumanising…
While hyperfocus and special interests form a part of the monotropic experience, attention in it’s many forms is the end-product (ironically the focus), as explained here in this short introductory animation:
Monotropism is an Autistic-derived theory about how attentional states among Autistic people differ significantly from non-Autistic attentional states. Often, because of the roots of the theory it’s described as an ‘interest-model’ of attention. Often in this context the definition of interest is considered to be only the things that a person wants to do and is excited by. But there are multiple definitions of interest, and another least-considered but pertinent one is to have a stake in something, to be invested in it. For me that definition also forms part of monotropism.
A Monotropic brain is constantly seeking the hook described in the video either in external places, or internal thoughts and feelings (something else rarely mentioned). That attentional hook is not only caught by things that are exciting, but also things that the person is invested in, something that might intrinsically motivate. This may be something negative, and could explain the looping that Autistic people sometimes do (going over thoughts and experiences over and over), or something that leads you to be able to do the thing that excites you.
My brain is constantly looking to meaningfully and deeply latch onto things. Even if I am walking down the street, if I can’t find something internal, my brain digs into a thought, or an experience, and flows into that.
To take this one step further though, we have to think beyond the attention focus and consider what might be feeding that attention? Where do the resources necessary for this constant hook seeking, and the states of deep attention that follow come from?
Until someone can come up with a better one, the only possible answer is: Sensory information.
All that sensory information being received, sucked in, processed and catalogued is needed to fuel the deep attentional state. People talk all the time (unless you’re writing the DSM of course, because sensory processing is not recognised within the diagnostic manual aside from repetitive behaviour) about the ‘sensory differences’ experienced by Autistic people (often performatively and dismissively), but beyond pathologising them, we’ve never considered that the difference in sensory processing might be purposeful, it might have a point. That it might be utilised intently in order to power an intense focus.
If we are consider to our emotions as a sensory state, is it any wonder that with the enormous depth of sensory processing going on, it is also accompanied by a huge deep well of emotion that is difficult to define (especially when those emotions are named and defined by non-Autistic terms which don’t encapsulate that depth of feeling at all?), sometimes to the point where unconsciously cutting it off is a safety feature.
For more information about Monotropism, please see:
Monotropism, and the interaction between monotropism and sensory processing.
For an exploration of the harms of not facilitating the needs of a monotropic brain, of constantly subjecting the monotropic brain to multiple forced attentional changes and not allowing it to enter a flow state, you can read about Monotropic split, an idea developed by David Gray-Hammond and Tanya Adkin. I won’t begin to mention here the role that dysregulation, burnout and aging can play in the brain wanting, but failing to be monotropic, and how distressing that can be.
Think about the Autistic body processing, passing on, interpreting and responding to that enormous depth of sensory information, utilising a nervous system just like just like Harriet’s nervous system. If Harriet is a non-Autistic person and Harriet isn’t absorbing and reacting to sensory information in the same way as an Autistic person might as it’s passed through her body, think about how her body might respond differently… How her messages might be different as they react with her organs, her anti-bodies, her pathogens, her muscles, her connective tissue, her cells, her language centres, her mind, and on and on.
If Autistic people are responding to sensory information in a completely different way, does it not stand to reason that their bodies aren’t going to react in a neurotypically centred way?
That a brain actively and consciously processing more information than a non-Autistic person is going to need direct, very clear, and easy to interpret communication that cuts through the noise, and then might respond with that direct communication too; they might not even communicate with spoken words at, as the brain may find them difficult to find or process, or may not even prioritise them as important, or those sensory differences might invoke motor differences…
Motor differences: sensory driving body movements driven by messages flowing from the brain but being misinterpreted once they read their end stage. In some that may look like dyspraxia (often dismissed as clumsiness), in others apraxia of movement, or apraxia of speech.
That because of that deep well of un-named and uninterpretable emotion, emotional dysregulation might occur more easily, particularly when a mind is seeking a hook to yank it down into a flow state of attention, but the world around that person is designed for swift attentional transitions. Behaviours might look different, body movements might be more exaggerated, stimming (a tool for regulation, energy re-direction, and communication) might look very different or more obvious (stimming is a human behaviour).
So many differences that can be explained, if not in whole, then in great part, by the fact that two human bodies have diverged away from each other in terms of sensory processing.
We could speculate why… Maybe in evolutionary terms there has always been a need for people who have the ability to move their attention swiftly or aren’t deeply attuned to the sensory world around them. In the same way that maybe there has been a need for those who are: The logicians, the deep thinkers, the innovators, the problem solvers, the creatives… and those more in-tuned to the sensory environment as a way of recognising danger.
There is no complete answer here, and that is the whole point.
There is no such thing as autism, only Autistic experience.
To those who are looking for concreteness, you won’t find it here. Anyone who can tell you exactly what ‘autism’ is, is lying to you, or themselves, or both. What’s terrifying is that we have whole services, whole professions, whole professionals who exist on the basis that autism is a concrete thing…
Those invested in narratives of ‘severe’ or ‘profound’ autism will tell you that their definition of ‘autism’ is the real definition. It is, as much as any other definition is, part of the real definition. Or not. Who knows! Again, that’s the point – nobody does! All we can say for certain is that there are shared and relatable experiences between those Autistic people who speak, and those that don’t, or can’t. That there are shared and relatable experiences between those that might be able to get a job or have children and those that don’t or can’t. At the very least, monotropism speaks to that.
Unfortunately what those people fail to take into account is the impact of the many, many co-occurring conditions, that are unique to that person, in the same way that so many things are unique to that person. This is not to dismiss the lack of support and need of someone with significant support needs, or of those who care for them, it’s to say that investors in those narratives, especially in terms of carers and parents, are often the most let down by too many professionals and ‘support services’ that have a limited understanding of what they are doing, less of an understanding of what they are talking about, and are usually those most confident that they are right – who hold the best of intentions but none of the information needed to make sure that those intentions don’t cause grievous harm.
So, what is autism?
A construct. Focused historically on white boys who present in a particular way.
What is Autistic experience?
A much healthier way of considering what it means to be Autistic, grounded in the principals of the neurodiversity paradigm, defined by shared and relatable experiences based on a similar sensory processing style and impossible to describe in a sentence.
It’s a name for a neurology that shapes and drives an identity, it is literally who you are, in the same way that every human being’s neurology shapes who they are.
It’s something a person is born as, that grows and evolves in response to the world around them, something that grows into an identity. An identity formed of many facets, shaped by the intersections of life. Just like every other human on the planet. There aren’t gendered versions of being Autistic, there aren’t ethnicitised versions of being Autistic, there aren’t versions that differ based on skin colour or creed, or based on age; and definitely not based on ‘severity’.
It is a shared experience with both similarities, and differences, based on a unique human’s experiences. Just like every other human on the planet has similarities and differences.
As the neurodiversity paradigm encourages us to recognises: Sometimes we lean closer to other humans, sometimes we lean away, but we are all human. Basing a narrative on the idea that there is a correct type of human, is arrogant, supremacist and eugenic.
Being Autistic is part of a burgeoning culture. It’s one worth getting to know.
READ MORE ABOUT WHAT AUTISM IS AND ABOUT AUTISTIC IDENTITY
For a different yet complimentary take on ‘what is autism?’ please see Dr Nick Walker’s excellent description.
There is so much more that I could have gone into here, so many myths to deconstruct, so many historical theories and misinterpretations to debunk and reframe and recategorize. But safe to say if you would like to delve more into this, and the impact of the pathology model of autism and all its ills, I would strongly recommend my articles on:
“Autism and it’s labels: Disorder and condition”, “An Autistic Identity”, “What is Neurodiversity?”, “The autism-industrial complex”, or more broadly Allan V. Horwitz “DSM: A history of Psychology’s bible”
For a more complete guide to how the diagnostic model of autism developed you can read Neurotribes by Steve Silberman. My 2023 book written with Associate Professor of Developmental Psychology Dr Amy Pearson: Autistic Masking: Understanding identity management and the role of stigma, while specifically about Autistic Masking, also provides an update on that described by Neurotribes (which was published in 2014).
If you are looking for a more comprehensive guide to the history of autism, my training, The Inside of Autism (available as an on-demand course only, and for private organisations), provides an entire section about the history of autism, including resources and interviews, looking at both the evolution of the diagnosis, a close look at some of the major players, and the impact of their work.
This essay, along with 16 others, is contained in my book, ‘Autism: A Collection of Essays’
If you’ve found this article useful you can support my work by donating any amount from $3 (about the same as a coffee – mine’s a caramel latte please!).
I know not everyone wants, or needs to buy one of my training courses, but I often find people will read one of my free articles and want to say ‘thank you’ (and this is really appreciated as they’re a lot of work to write!) Buying me a virtual coffee is a really easy way to say thanks. It also supports me to keep being able to create new, free content and keep my older, free content up-to-date. It also allows me to keep my website ad-free!
My Autism FAQs page is a good place to start if you’re new to my work and want to explore more. Thanks for your support, Kieran.
JOIN KIERAN’S MAILING LIST (for infrequent, but useful, updates!)
And, as a thank you for joining, you’ll get a 10% off code emailed to you which you can use on Kieran’s on-demand autism training and ebooks (including his flagship training The Inside of Autism).
Training and ebooks from Kieran
I have a full range of autism training and ebooks on my website; starting from just a few dollars and all priced to be affordable.
Got more questions about Autism?
If reading this article has given you more questions then my Autism FAQs is a great place to point you in the right direct to get answers (and most of where I direct you is to free-to-access resources!).
