Autism 101

When autistic people disclose their autism, they often struggle to explain what is autism. This article is for your non autistic loved ones. I hope it helps...

Photo by Artem Beliaikin on Unsplash

Dear readers,

May 2026 bring you serenity, the fulfilment of your goals, big and small, and many chances to discover who you are, create who you want to be and to remember that you are always “enough”.

I know it has been a while since my last post. As some of you know, my health sometimes slows me down, but I am glad to be writing again today.

That being said, let’s dive into our subject…

When people hear the word “autism”, they still often rely on stereotypes to figure out what autism is: a child who does not speak, a person trapped in rigid routines, a math genius who cannot relate to others. These clichés are of course very far from reality.

In practice, autism remains a complex phenomenon that has been debated for more than 70 years. There is no simple, widely accepted definition. We do not know exactly what causes it, or even whether there is a single cause. What we do have is an increasing number of precise descriptions from the inside. Over the past fifteen years, many autistic adults have begun to speak out and explain what it means for them to be autistic. These accounts converge on one point: autism is a particular way of being in the world, stable across the lifespan, different from the norm but no less human.

Many autistic people refuse to see themselves as ill. Instead, they see themselves as disadvantaged in a society built for non autistic people, a society that leaves little room for their way of thinking, feeling and functioning.

If we want to understand autism, we need to start by listening to autistic people themselves and let go the stereotypes.

Stubborn stereotypes

“You don’t look autistic!”

Autism is not necessarily visible. Many people still imagine that there is an “autistic look” you can recognise at first glance, as if autism were written on the face or showed up in the voice or the way someone moves. In reality, a large number of autistic people go unnoticed in everyday life, especially those who have learned to observe social rules and imitate them well enough not to attract attention. They study, work, talk, joke, raise children, and no one realises the constant effort they make to appear “normal” and the depth of their silent suffering.

In this context, the phrase “you don’t look autistic” becomes particularly painful. It suggests that the person speaking believes they can spot autism with the naked eye, based on “ideas of autism”. It also implicitly invalidates the experience of the autistic person. Hearing “you don’t look autistic” often feels like receiving a message such as “I don’t believe you, you’re exaggerating, you’re mistaken, you’re too functional for this to count, you say this to get attention”. It discards the words of someone who is expressing their difference and adds another layer to a feeling that never really leaves autistic people, the feeling of being strange, inadequate, not enough.

Reminding people that autism is not always visible is therefore essential, because it emphasises that autism is not a costume you can put on and take off at will.

“We’re all a bit autistic!”

Saying that “everyone is a little autistic” may seem kind at first glance. The implicit intention is often “you’re not that different, we’re all alike”. In practice, this sentence creates several problems. First, it blurs the distinction between a few isolated traits and a neurodevelopmental condition that shapes an entire life. Yes, many people can recognise themselves in some aspects: a need for calm, social fatigue, a liking for routine, awkwardness in certain situations. But sharing two or three traits does not mean being “a little autistic”, any more than sometimes feeling sad means being “a little depressed” in the clinical sense.

“Everyone is a little autistic” has also a directly invalidating effect. It downplays the extent of the difficulties faced by autistic people, which do not boil down to liking silence or hating open plan offices, but concern the very way attention, perception, social interaction and energy management are organised in daily life. If “everyone” is a little autistic, then autism no longer has clear contours or specificity, and the autistic needs quietly slide into being seen as whims or excessive demands.

Finally, this sentence prevents us from asking the real question which is not “in what way are we all a bit autistic?” but “what difference does it make to live with a clearly autistic profile in a world organised for non autistic people?”. Recognising this difference does not mean ranking human beings. It simply means accepting that autists need specific adjustments in order to live without exhausting themselves, rather than diluting their reality in a convenient “a bit” that suits everyone except them.

What autism is not

Autism is not a disease to be cured

Autism is not something you “catch” like the flu. We don’t “have” autism, we are autists. Autism is not a disease that suddenly attacks the brain. People are born autistic and die autistic. Being autistic means having a specific way of functioning that is present from early childhood. These particularities can often be observed from around eighteen months of age (See Mottron here)

Since autism is not a disease, an autistic person can, in theory, live a fully satisfying life like any other human being. Yet many autistic people are in distress because their way of functioning does not match the norm and they they exhaust themselves trying to adapt.

Concluding that if autistic people suffer, this must mean they have a disease may look logical at first, but it is in fact a mistaken line of reasoning. The suffering of autistic people doesn’t prove that autism is a disease, any more than the suffering of non autistic people turns their “non autistic” condition into an illness.

Seen in this light, autism is not something that should be cured. What makes sense is to understand how autistic people function and try to adapt the environments in which they live.

Autism is not the result of bad parenting

Old theories that blamed parents, especially mothers, have long been abandoned in the scientific literature. The idea of “refrigerator mothers” ¹ put forward by Bettelheim is now a classic example of a false and guilt provoking theory.

Autistic people can be found in all social backgrounds, with very different parenting styles. Blaming parents means missing the essential point: the autistic person has their own way of processing information and connecting with others, which calls for adjustments in the environment, not for guilt.

Autism is not a lack of empathy

Saying that “autistic people have no empathy” is simply false. What we see instead is that communication between autistic and non autistic people is often asymmetrical and full of misunderstandings. The implicit social rules of non autistic people are not always obvious to autistic people, and the reverse is just as true. Many non autistic people understand the autistic experience very poorly.

This issue of mutual misunderstanding has created many problems, especially in research. Non autistic researchers observed autistic children or adults whose behaviour differs from the norm, and because this behaviour was not “normal” in their view, they concluded that it was pathological. This is how lists of “symptoms” supposedly characterising autism were created.

This phenomenon has been described as the double empathy problem by Damian Milton. The difficulty does not come from a lack of empathy on one side only. It comes from a mutual misunderstanding between two different ways of perceiving, feeling and interpreting the world.

Autism is not limited to boys and/or children

Autistic girls and women have long been invisible because diagnostic criteria and popular images were centred on male profiles. For many years autism was simply assumed to be mostly a male condition, and most screening tools and clinical descriptions were built from the observation of boys. As clinicians and researchers (finally!) started to listen to autistic women and girls, it became clear that the criteria and tests used for decades were largely male centred, which helps explain why so many girls and women were overlooked.

Moreover, autism does not disappear as if by magic at the age of 18. Many adults, including older people, only discover late in life that they are autistic, after years of misdiagnosis or incomprehension.

Autism is not just a “level of functioning”

Labels such as “mild autism” or “severe autism” are misleading. An autistic person may speak fluently, make eye contact, have a university degree, and still be in great distress in daily life, for instance on sensory, social or financial levels. On the other hand, some autistic people who speak little or not at all may have a rich cognitive and emotional life that is not visible at first glance.

The idea of “high functioning” or “low functioning” reduces a much more complex reality to an oversimplified picture and often hides the person’s real needs.

Another starting point: monotropic attention

To understand autism in a way that goes beyond a list of “symptoms”, there is a simple and powerful model: monotropism.

This model was formulated in particular by Dinah Murray, Mike Lesser and Wendy Lawson in the early 2000s.

The core idea

Our attention is limited, we cannot pay attention to everything at the same time for a biological reason: paying attention requires brain energy which is limited. We therefore have to choose, consciously or not, what will be at the centre of our attention and what will remain in the background. For most people, attention is polytropic. It’s spread over several things in parallel with a certain ease in moving from one to another.

Murray uses an optical metaphor to describe this difference in attentional focus. For the majority of people, attention is like a diffuse light that evenly illuminates a wide field of vision. For autists, attention is like a laser, where very concentrated light shines intensely on a narrow area.

Autistic people tend to have a monotropic focus of attention across all areas of life. In autism, monotropism is global and structural: it shapes social, perceptual, and cognitive experience, the way time and space are organised, what a person notices and finds meaningful, and what causes stress or has emotional impact.

You may object that you know people who are not autistic and who are so passionate about a topic that they forget everything else. Indeed, some non autistic people such as artists, researchers, gamers or people deeply interested in a particular subject, can show intense hyperfocus on something.

What distinguishes this kind of hyperfocus or passion from autistic monotropism is the pervasive nature of the latter. Autistic people find it much harder to function in a polytropic mode and spontaneously return to a monotropic mode as soon as they can.

What monotropism explains in the autistic experience

The monotropic model makes it possible to connect the dots. The famous lists of so-called symptoms that do not seem related suddenly makes sense. It shows that they are not symptoms at all, but different manifestations of a specific way of interacting with the world.

Intense special interests

When an autistic person directs their attentional “laser” onto a subject, they can immerse themselves in it completely. The focus of attention then becomes a tunnel in which they invest a large part of their energy. This is where the familiar language of “hyper” and “hypo” comes from. Inside the tunnel they tend to be hyper focused, hyper invested and hyper precise about what relates to their subject, while at the same time hypo focused and much less responsive to almost everything outside it. Once a person’s attentional focus is engaged in a tunnel, they are hyper focused on what is inside and effectively hypo focused on the rest of the world.

This doesn’t mean that all autistic people only have one or very few areas of interest to the exclusion of all others. For some, this may be the case. Someone might devote most of their life to bird watching, for instance. But more often, autistic people discover several areas of interest over time and direct their monotropic attention towards each of them, either in succession or in parallel.

Through the monotropism model, what is usually and very pejoratively described as “restricted interests” in lists of symptoms appears in a different light. It is a particular way of being, consistent with a monotropic attentional style, simply different from the dominant polytropic mode.

Difficulty changing task or context

The amount of energy invested in an attentional tunnel is huge. When someone has to leave that tunnel, the disengagement itself is energy consuming and stressful, and the transition takes time. What is sometimes wrongly labelled as stubbornness or obsession is in reality a mechanical consequence of this attentional style. The person simply cannot do otherwise. Whether they are reading a book, washing the dishes or following a train of thought, any interruption that forces their attention out of the tunnel is difficult.

A tunnel can also be a broader, long term activity such as a profession. Some autistic people become experts in what they do because they go deeper and deeper into their activity for years, sometimes decades. This makes them highly competent in their field, but also very vulnerable. If for any reason they can no longer practise this activity, having to leave a tunnel in which they have spent most of their life can be catastrophic.

Need for routines, predictability and transition time

Since changing attentional tunnels requires energy, autistic people tend to find strategies that reduce the cost of transitions. The most common strategy is the creation of routines and rituals, and the search for familiarity or sameness. Predictable scenarios and announced transitions are easier to handle than unexpected events. They allow the autistic person to prepare to disengage their attention from one tunnel by taking the time they need.

We can appreciate how the monotropism model takes us far from the idea of “stubborn rigidity” that is often associated with autism. Autistic people intuitively try to protect themselves from excessive energy expenditure. They are not “rigid” on purpose as if they were narrow-minded, they are cautious by necessity.

Sensory overload

When attention is strongly engaged in one tunnel, the system has very little spare capacity left for anything else. Incoming stimuli, whether unexpected or simply too numerous, become extremely intrusive, sometimes violent and painful. It is not only sudden noise or event that may be a problem, it’s also accumulation and fragmentation. A day filled with dozens of small tasks that constantly force a change of focus is, for a monotropic person, like opening and closing attentional tunnels non-stop, which is exhausting.

Places designed for polytropic brains, those with a “wide spectrum of attention”, are almost always sources of sensory overload for autistic people. A typical example is the supermarket or shopping mall. Background noise, loud announcements, harsh lighting, bright colours, shelves full of objects, crowds in motion, all of this arrives as a block and quickly overwhelms the filtering capacities of the monotropic brain. The same is true for school, with high and continuous background noise, trips back and forth between classrooms, excessive light, constant visual stimulation and sometimes strong smells. Open plan offices share many of the same features: people moving around, conversations in the background, phone calls, notifications and visual clutter. For a monotropic mind, this steady stream of competing stimuli can quickly become overwhelming.

Difficulties in social interaction

Social difficulties are probably what causes autistic people the most distress. From childhood onwards they struggle to have interactions that are considered “normal” with others and many times, they fail.

Here again, monotropism offers an interesting framework for understanding what is going on. In an interaction, many signals circulate beyond words: intonation, body language, facial expressions, changes in physical distance, social codes, taking turns in conversation, and so on.

A person with polytropic attention receives this range of information as a relatively coherent whole. In contrast, an autistic person tends to open a separate attentional tunnel for each category of signal. They might, for example, focus on the words, then on the tone, then on the face, then on a stain they have just noticed on the other person’s shirt, which makes it difficult to take everything in at the same time. This scatters their overall attentional capacity and practically forces them to “change tunnels” all the time, which very quickly becomes exhausting.

Faced with this difficulty, many autistic people develop strategies that often remain only partially effective. One of the most frequent consists in preparing their interaction in advance by mentally imagining every possible scenarios. They rehearse as if they were preparing to act in a play and repeat dialogues in their head in order to anticipate what will happen and be ready. Since in real life things rarely go according to plan, their efforts are often poorly rewarded.

In classic descriptions, failure to respect conversational turn taking is often presented as a “symptom” of autism. Seen through the lens of monotropism, it takes on a different meaning. An autistic person may be so focused on a detail of their interlocutor’s face, on an expression or on understanding the content, that they miss the moment when they could speak. Conversely, they may be so absorbed in what they are saying that they do not notice that they are taking up the whole conversation at the expense of the other person. In both cases, this is not a lack of interest in others. It is the direct consequence of an attentional style that makes it very costly to manage all social signals at once and to quickly switch tunnels.

Ordinary group conversations often involve following several threads in parallel: content, tone, implied meanings, body language, context. They are well suited to a polytropic focus of attention which can spread over theses threads. For a monotropic mind, this spread can quickly become difficult. The person doesn’t know where to aim their “laser”, their attention jumps from one thread to another without ever really settling, and they end up with very little real chance to join in.

Some wait patiently for a silence in the group to finally say something. But silences are often moments where every one else is gathering their thoughts or resting their mind and getting ready to speak again. That is why so many autistic people say the same thing : “…and by the time I finally get to say something, no one hears me !”

So, in a group, autistic people are at a disadvantage whereas non autistics surf on the conversations with ease and pleasure.

In addition, autistic people can also become frustrated when they don’t get the chance to enter an intense attentional tunnel. This is one reason why many prefer one to one conversations, which make deeper exchanges possible. Few things are more satisfying for an autistic person than finding someone who is willing to step into the same tunnel and spend a long time sharing ideas, experiences and emotions. This is often how autistic people form relationships: the connection is built through depth, it engages the whole person and it tends to last.

This is only a brief overview of the consequences of monotropism, but a coherent picture already starts to emerge. Many autistic characteristics can be seen as the effects of a single attentional style, rather than as a collection of independent “symptoms”.

Diversity, “comorbidities” and “bad luck”

The search for a definition of autism is all the more difficult because there is a great diversity of autistic profiles. Even if many autistic people share a particular way of organising their attention in tunnels, this configuration can be expressed in almost infinite ways. There are potentially as many forms of autism as there are possible combinations of tunnels. Some will be deeply interested in human nature, enjoy frequent interactions, seem outgoing and have a large circle of friends, while others will have more solitary interests and maintain only a few very stable friendships throughout their lives. Saying that autistic people are “just introverts” completely misses the point.

In fact, autism eludes any single definition because it is a human phenomenon of extreme complexity.

Another difficulty that comes on top of this, when we try to define autism, is the question of “comorbidities”. I put this term in quotation marks because although it is regularly used in research, it assumes that autism is a morbidity, in other words a disease, which it is not. Terminology issues aside, we cannot ignore the fact that some autistic people also have:

• an intellectual disability,

• language disorders,

• significant motor difficulties,

• epilepsy or other neurological conditions,

• associated conditions such as ADHD, dyslexia and so on.

In some circles, especially in medical settings, this leads people to think that there are more severe forms of autism than others. Yet all these conditions also exist in the non autistic population. You can find non autistic people with intellectual disabilities, motor and or language difficulties. These conditions are not specific to autism. We can see them instead as additional layers that combine with autism and create further causes of suffering.

In other words, autism is characterised by a specific cognitive attentional style. Autism associated with epilepsy, for example, is an extra stroke of bad luck that happens to affect an autistic person, but could affect anyone else.

That being said, Murray offers a compelling explanation of why some autistic people struggle with language. I will save that point for another article, otherwise this one would become far too long… Stay tuned!

The obsession with causes and the illusion of a “cure”

At first glance, looking for the cause of autism might seem like a good idea. In reality, the question is poorly framed, to say the least.

A complex multifactorial phenomenon

The outcomes of research on the causes of autism are, so far, rather disappointing. Genetic studies have identified a very large number of genes and variations associated with a higher likelihood of being autistic. The more this list grows, the clearer it becomes that no single gene explains autism on its own.

We see the same thing with intelligence. Despite decades of work, no “intelligence gene” has ever been identified, simply because it does not exist. Intelligence is also a complex multifactorial phenomenon with no single cause. In the same way, there is no “autism gene”, but rather a set of genetic factors and perhaps environmental ones as well (this is still very much debated) which, combined, may make an autistic profile more or less likely.

Looking for “the” cause of autism is therefore a bit like looking for “the” cause of being a musician or “the” cause of having an introverted personality. Or put in other words, since autism is a way of being human, searching for the cause of autism is a like searching for the cause of being non autistically human.

The hidden issue behind the search for “the” cause

Very often, the search for a cause is not neutral. It is driven by an implicit idea: if we find the cause, we will be able to prevent autism, correct it, make it disappear. This leads to a perplexing idea: the real aim of searching for the cause of autism may not to better understand autistic people who already exist, but rather to reduce the number of autistic people who will be born. This raises a fundamentally ethical question. Do we want a society that tries to remove certain human profiles, or a society that learns to live with them and benefit from their difference ?

Autism cannot be cured, and that is not the goal

Autism cannot be “cured” for a simple reason. Autism is a specific way some humans relate to the world. Wanting to cure autism is as absurd as wanting to cure non autistic people for being non autistic.

What we can do instead, is listen to what autistic people say about their experience and the difficulties they encounter. Some of these difficulties are intrinsic, directly linked to how their attention and brain work. Monotropism, for example, can lead them to invest so heavily in a project or activity that they forget everything else. It is common to see autistic people become so absorbed in an attentional tunnel that they lose sight of basic needs such as eating, sleeping or… even going to the toilet.

When this engagement becomes too intense and lasts too long, the person can end up exhausted and drained, to the point of developing autistic burnout. In such cases, the problem is not the presence of a special interest, but the lack of appropriate safeguards around that interest.

Alongside intrinsic difficulties, autistic people also face many extrinsic difficulties that come from the environments in which they have to live. Public spaces and workplaces are often overstimulating on a sensory level, with noise, harsh lighting and constant movement. Social life demands almost permanent camouflaging (masking) in order to appear “normal”, which consumes a huge amount of energy.

Everyday “normal” life is organised around a multitude of small fragmented tasks that require very frequent shifts of focus, for example moving from a phone call to a form to fill in, then to a household task. This aspect comes from the way society organises time and obligations, but it becomes much more costly for someone with a monotropic profile who needs continuity and stable blocks of time in order to function. On top of this, there are often professional demands that are hard to manage, such as rigid schedules, more fragmented tasks and implicit expectations of fast, informal communication.

The consequences of this combination of intrinsic and extrinsic difficulties are significant. Many autistic people experience severe chronic fatigue, repeated episodes of burnout, interruptions in their studies or disrupted career paths. It is common for them to end up in financial insecurity because they struggle to keep a job that suits their profile or have to accept low paid part-time jobs.

On a relational level, the accumulation of misunderstandings, rejections and criticisms such as “not doing things the right way” or “just need to make an effort” leaves lasting marks and can lead to social isolation, sometimes with anxiety or depressive symptoms. In other words, part of the difficulty is directly linked to the autistic attentional style, but a large part is produced or amplified by environments that do not recognise this style and fail to adapt to it.

What if we used resources differently?

In my view, part of the resources currently devoted to the highly uncertain quest for a single cause of autism could be used in a more helpful way by redirecting them towards the concrete support autistic people need. We could start by asking simple questions such as:

• What would it take for autistic people to have a good life and contribute fully to society?

• What could we do to reduce the suffering of autistic people?

• How could we spare them trauma linked to prejudice and stereotypes, support them with administrative procedures, improve their living conditions, help those who live in severe precarity and support them with the health problems they frequently face?

These are some of the directions in which these resources could be used in a much more relevant way.

It is not about charity, as if helping autistic people were an optional generous gesture. It is both a matter of basic social justice and a matter of collective intelligence. By making environments more compatible with autistics’s needs, society would give itself access to skills that are currently largely wasted. Many autistic people have the capacity to concentrate for long periods of time, they display great perseverance and a strong preference for precision and fact checking.

They easily spot inconsistencies, minor errors, anomalies in data sets or complex procedures. They can develop advanced expertise in specialised fields, sometimes where the majority quickly loses interest, and they can propose original solutions because they do not automatically follow social “obvious truths”. Their often direct, unsparing relationship with reality can be very valuable for highlighting problems that everyone else prefers to ignore.

Investing in good living, working and health conditions for autistic people is therefore not only “helping autistic people”. It is also allowing the whole community to benefit fully from these specific skills instead of letting them burn out in exhaustion, precarity and isolation.

So … what is autism after all ?

If we are honest, we still do not have a neat, one line definition of autism. And that is probably a good sign. Autism is not a simple thing. What we do have, though, is something much more concrete: the lived experience of autistic adults who have found the words to describe their way of being in the world.

Monotropism offers one useful model to connect the dots. It shows how many traits that used to be listed as separate “symptoms” can be understood as different expressions of a single attentional style. It does not explain everything and it is not a magic formula, but it gives us a coherent picture of autism across sensory life, thinking, social interaction and energy.

Beyond models and concepts, autism is first of about people. Autistic people are not abstract profiles. They are children, teenagers and adults who feel deeply, who care about others, who have love to give and boundaries to protect. Many work hard to build a life that is bearable and meaningful in environments that are often poorly adapted to them. They bring skills that matter: a different way of noticing the world, of questioning what “goes without saying”, of relentlessly staying with a question until something true emerges.

So perhaps the most honest answer to “what is autism?” is this: autism is a particular way of being human that we can only really understand by listening to autistic people themselves, and by taking seriously what they tell us.

Definitions and models are one thing but what matters the most is how humans in general treat each other: with open minds, kindness, understanding and love.

And we don’t need a perfect definition before we start doing that.

Thank you for reading to the end.
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Sources

Milton, D. E. M. (2012). On the ontological status of autism: The “double empathy problem”. Disability & Society, 27(6), 883–887. https://doi.org/10.1080/09687599.2012.710008

Mottron, L. (2024). Si l’autisme n’est pas une maladie, qu’est-ce ? Une refondation de la définition de l’autisme, de son étiologie et de sa place dans l’espèce humaine. Mardaga.

Murray, D., Lesser, M., & Lawson, W. (2005). Attention, monotropism and the diagnostic criteria for autism. Autism, 9(2), 139-156. https://doi.org/10.1177/1362361305051398

1. The “refrigerator mother” theory wrongly claimed that autism was caused by cold, distant and emotionally uninvolved mothers, whose lack of affection supposedly “made” their child autistic.