At the end of last year, we published a paper in Frontiers in Psychiatry called "A molecular framework for autistic experiences". The main premise of the article grapples with how internal experiences of autism could be used to reshape molecular research. Trying to close the gap between a multitude of diverse lived experiences and an equally vast biochemical landscape involved a lot of headache-inducing conceptual bridge building. I spent almost a year digging academic rabbit holes into three different fields and having to be periodically rescued from underground. But funnily enough, as I have spent the December holidays enthusiastically explaining the idea to my long-suffering friends and family, I have discovered that the most difficult part isn't the complex molecular biology. It’s translating neurodivergent physiology into feelings that neurotypical people can recognize. And I think this is the part that is most important - because, at least in the short term, it has the potential to be the most transformative. In this post, I can hardly try to capture a whole universe of experiences – but maybe just a small piece of a single planet, that could change the way you see the neurodivergent galaxy.
Crossing the colour barrier: navigating a neurotypical world through neurodivergent eyes
Did you know that dogs are partly colour-blind? Humans have three different types of cones or “colour sensors ” in our eyes, but dogs only have two. They have something called dichromatic vision, meaning that they can only see in shades of blue and yellow:
Knowing this, imagine trying to explain to your dog what the colour red looks like. You can’t tell them that red is "a darker version of pink or orange", because they have never seen either of those colours before. You would have to consider their field of reference for your explanation to make sense to them. They can see brownish and yellowish colours - so perhaps they could understand that red is "a very intense yellow with an overlaying shadow of brown".
This is sort of what it's like for autistic people trying to explain their experiences of the world to their neurotypical counterparts. Except that they don’t have a neat visual depiction like this one to tell them what colours you can and can’t see. Interestingly enough, this convoluted metaphor about colour-blind talking dogs is actually an official academic concept known as the double-empathy problem. This refers to the bidirectional miscommunication that happens between different neurotypes because 1) neurodivergent and neurotypical people view the world in different colours and 2) neither party is aware that the other is equipped with a different set of “colour sensors”. But since neurotypical people make up a majority, both sides often come to the conclusion that the autistic perception of the world is simply wrong.
In fact, many neurodivergent children grow up unaware that they are seeing the world entirely differently to the people who are teaching them how to navigate it. When parents and teachers hand down instructions like “stand on the green line”, they assume that everybody can just see the stripe of green on the floor. But some neurodivergent children have never been able to see the green part of the colour spectrum, while others can see so many shades of green that this instruction is entirely unfathomable.
At first, these children may try to communicate what they are seeing to people they trust: "But mom, ALL the lines are green!’". Often, these genuine attempts to understand the world on the other side of the "colour barrier" are misunderstood, perceived as misbehaviour, and punished accordingly.
So, autistic children learn to disbelieve their own eyes. They learn that expressing what is true to them is a punishable offence, and many will stop trying to explain. Instead, they develop a set of internal rules and conversions to match the colours they see with the correct neurotypical words. They are essentially viewing the world in second-hand, through a filter of complex equations that requires an immense amount of mental effort to sustain.
This is the essence of “social camouflaging”, which is an emerging concept used to describe how many autistic people try to navigate a neurotypical world. Camouflaging is experienced differently by each person, and refers to internal efforts that are, by definition, removed from external presentations. In other words, just because someone “looks autistic” or “looks neurotypical” from the outside doesn’t tell you how hard they are working to try and mask autistic traits. And no matter how "invisible" the effort may seem, social camouflaging comes with profound mental and physical costs.
Social camouflaging: from academic definitions to sensory dictionaries
Social camouflaging in autism has been formally defined as “the need to suppress autistic traits or disability… in order to meet family, social, vocational, or other mainstream expectations.” (Embrace Autism gives a comprehensive overview of this concept here). Camouflaging can be divided into three components - called masking, compensation and assimilation. Masking means consciously trying to hide autistic traits; compensation involves performing foreign neurotypical behaviours; and assimilation means finding ways to "blend in" with the crowd.
As we are developing definitions for internal autistic experiences, I think it’s important to recognize that these definitions themselves can fall victim to the double empathy problem - in that we sometimes lack a shared understanding of what the words inside them mean. Different neurotypes not only have very different physiologies, but also unique information processing strategies that make it difficult to communicate across this physiological distance. As this blog post explains, neurotypical people are programmed to understand their environment based on their own prior experiences. But autistic people experience and express feelings very differently, due to a combination of hyper- or hypo sensitivities, alexithymia, and communication differences. So different neurotypes can have vastly different interpretations of the same definition, especially when it comes to internal physiological experiences. We might be looking at the same thing, but seeing different colours. That is why it might be impossible to understand the consequences of social camouflaging if it is just this abstract concept in your brain. It will only make sense if you can feel it as a physiological response in your body. Maybe we need to go beyond linguistic definitions, and try to develop a sensory dictionary that translates the cognitive and physiological components of social camouflaging into sensory equivalents that a neurotypical physiology can recognize.
Cognitive camouflaging: learning to breathe
Cognitive camouflaging can be likened to the effort you would need to expend if you had to consciously control autonomic physiological functions. These are things like breathing, or walking, or blinking. For most people, these processes just happen without us really noticing. Our lungs expand and contract before we ever realize we needed oxygen. But imagine having to learn the Latin names for every single muscle that is involved in respiration, and which direction it must move in, and how much force it must exert, and which blood vessel it must connect to... all to take a single breath. You would spend all day every day focusing solely on making sure you kept breathing.
Social camouflaging for autistic people is having to consciously control an infinite number of daily functions that are just autonomic for neurotypical people. All day, every day, immediate exhausting equations need to be solved. Which of the million sounds in the world are you supposed to reply to? What mathematical function can predict the periodic waves in which herds of people move from one corner to the next? When one says, "thank you", how many degrees should vocal tone and pitch be increased for one's gratitude to be believed? And every second in the public sphere requires filtering your whole being through an internal encyclopaedia of neurotypical behaviours and their acceptable responses.
So much mental energy is expended just trying to exist – and so much more is expended trying to make it look “effortless”. This would leave about 3% of your brain available to do what most of us need 100% of our brains for: spelling tests, science exams and history essays, the development of self-concept and identity during middle childhood and adolescence, learning how to cope with grief, failure or disappointment, forming relationships and social support networks … the list goes on. Cognitive camouflaging not only leaves autistic children mentally exhausted, but hugely impairs their academic and social development, erodes their sense of self, and leaves them highly vulnerable to severe psychopathology throughout adolescence and adulthood.
Physiological camouflaging: fighting invisible fires
Camouflaging also has a physiological component, but this is less well-recognized - I think because it is so foreign to our neurotypical frame of reference. When autistic people try to explain that eye contact hurts, the air feels anxious, and the grocery store sounds nauseous, neurotypical people tend to interpret these to be emotional rather than physiological responses. This is because, for non-autistic people, sensory information is something that just flows through them like a river of white noise in their subconscious. But for autistic people, this stream of information is a brick wall.
If camouflaging was translated onto neurotypical physiology, it might feel like waking up one day to discover that your hair was on fire. It feels just like any fire would: there are flames eating into your skin, your heart is racing with panic, your lungs are choking on the smoke, your eyes are watering and hot wind is roaring in your ears. But, after dunking your head under the shower for several minutes, you discover something unique about this fire: it is inextinguishable. You run outside in a panic to find someone to help you, but after numerous desperate and confusing encounters, you learn something else about the fire: it is invisible to everyone but you. You have no choice but to go about your day as if nothing is amiss. Autistic children might end up managing this fire in different ways as they grow up. Maybe you draw patterns in the carpet at preschool to distract yourself from the pain until you are told to stop fidgeting. Perhaps you count your breaths all day to push down the constant panic, but this means you get into trouble for not answering questions in class. Maybe you learn to keep moving, constantly, in an attempt to outrun the flames, and you are punished for being disruptive. Or maybe you have no choice but to hide somewhere because it hurts too much, and your teachers give you detention for skipping class.
For a while, you might think that everyone else deals with the same invisible fire, except they are just much better at managing the fallout. As years go by, you learn that nobody else is on fire, and it must be something wrong with you. You must take your maths tests, and attend school assemblies and play soccer in PE while your head burns and your eyes sting and you fight to breathe through the smoke. And above all, you need to hide all visible signs of discomfort because the fire is invisible, it is your own fault, and nobody must know that it is there.
I think it is important to point out that in this metaphor, the autism itself is not what is causing the fire. It is the friction between the neurodivergent body and the neurotypical expectations imposed on it that lights the spark. The amount of friction will differ between individuals, depending on the gap between internal capacity and the external environment. For some people, there are conditions in which the fire is always controllable, and for other people, those instances are very few and far between. Regardless, the longer the fire remains undetected, the further it will spread until there is nothing left to burn.
Autistic burnout: all fires run out of fuel eventually
Chronic social camouflaging leads to something called autistic burnout, defined as “a state of physiological and psychological incapacitation, exhaustion, and distress in every area of life” marked by “loss of function, reduced tolerance to stimulus and an increased manifestation of autistic traits”. At this point, there is no more capacity for social camouflaging at any level. Everything hurts – it is impossible to tolerate sensory, social or cognitive demands. It’s as if, yesterday the sky was blue and today the sky is purple. What you were able to do yesterday, is a physiological impossibility today. The world is a different place and you are a different person. So apart from the existential exhaustion, autistic burnout is also a really frightening and confusing experience.
In children, burnout might look like increasingly rigid behaviour, school refusal, sensory overwhelm or extreme anxiety. You might also notice more frequent “meltdowns”, “shutdowns”, and disruptive outbursts. In adolescents and adults, autistic burnout can sometimes look like, feel like, and co-occur with a host of other psychiatric comorbidities and this can make things quite complicated. Something like major depressive disorder (MDD) can contribute to autistic burnout, and the right interventions could be instrumental in finding internal capacity for life again. But recovery from depression can be impossible in a state of profound burnout. What’s more, clinicians, friends and family members alike expect recovery to look like re-acquiring the ability to participate in “normal functioning”. But sometimes, short term solutions to reverse the symptoms of burnout only end up sending someone back into the middle of an interminable fire until everything burns down again.
Accurately identifying autistic burnout can be instrumental in facilitating access to a diagnosis, accommodations or interventions that might promote recovery. But even in this best-case scenario, chronic camouflaging and autistic burnout have long term, sometimes irreversible, consequences. Research shows that autistic people are at a much higher risk of MDD, PTSD, anxiety disorders, self-harm, and suicidal ideation. This is true for all age groups - even in children younger than 10 years old. And both social camouflaging and autistic burnout are significantly associated with suicidal ideation, suicide risk, and mortality by suicide.
I know these statistics are hard to read because they are hard to write about. But so often, social camouflaging is considered a sign of “success” rather than a risk factor for pathology – even, and sometimes especially, by neurodivergent people themselves. It is definitely not cut and dried – camouflaging often does facilitate increased access to privileges like education, employment and relationships. Even more important, all of these issues are intersectional in nature. In some contexts, masking is necessary to keep vulnerable people safe – including those in unstable family or social environments, those who could be racially discriminated against in schools, workplaces and judicial systems, and those who are more likely to be targets of violence or assault. So it is important to recognize how camouflaging functions as a way to navigate past many systemic barriers to accessibility. Still, I think that most autistic people would be safer if more people understood the internal cost they are required to pay to just exist, let alone function, in a neurotypical world.
The right ingredients but the wrong recipe: why diagnosis can make all the difference
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Because we have all grown up in a world that has stigmatised autism, there is still so much fear that surrounds a diagnosis. And it is certainly an important conversation to have –ableism is entrenched within most areas of society, and a diagnosis can bring its own costs and challenges. But I think it is critical to start talking about the consequences of not recognizing or understanding autism too.
Autistic children are born as a unique combination of ingredients destined to be baked according to their own recipe. But without a diagnosis, they are lemon meringue pies trying to survive in a chocolate cake factory. As they progress down the factory line, pieces of them that were meant to stay whole get chopped into tiny pieces. Their insides get scrambled in ways that don’t make sense. They are told that they have too much of one thing and not enough of another, and that they are entirely missing whole ingredients. They get put into an oven that is far too hot for far too long, and when they come out burned and broken, they are told that it was their fault.
An autism diagnosis is not just about "recognizing" the autism, but about other people understanding, accepting and accommodating who you are. So much harm can come from autistic children misunderstanding themselves - without an explanation for their differences, they often just conclude that they are “bad”, “wrong” or “broken”. It can be immensely powerful to have teachers, parents and family members who teach you that your physiological and emotional reactions are merely a result of underlying physiology rather than a character flaw or a personal failure. In fact, studies have shown that children who learn they are autistic at a younger age are less likely to suffer negative mental health consequences later in life.
Social isolation is also cited as one of the likely reasons for increased rates of suicidality in autism. Access to a social support network is protective for all of us when it comes to mitigating psychopathology. But a chronic misunderstanding of autism tends to erode relationships over time because it can be so confusing and painful for both parties. Being fundamentally misinterpreted as a person can feel incredibly lonely, even when you are physically around other people, even when these other people care about you. Sometimes it might feel like you just end up hurting the people you care about even when you are trying your hardest not to. Most of us have a sort of “safety net” of knowing that our close friends and family members want us to “be around”. But if you always feel as though you are unable to care about people without disappointing them, or hurting them, or letting them down just by who you are, this safety net disappears.
That’s why I think understanding is such a big word here. Mental illness, accessibility and quality of life are such huge complicated problems – especially in the context of autism - that it can feel overwhelming to even think about. But simply understanding each other better can turn relationships that are fraught with unspoken questions about taking or assigning blame completely inside out. Maybe it is understanding that a meltdown is an uncontrollable panic attack, rather than a tantrum, or a screaming match. Or maybe it helps to understand that a shutdown is physiological or emotional overwhelm rather than an expression of anger, stubbornness, or defiance. Shutdowns can often be misinterpreted as emotional retreat, or coldness, or a lack of caring – when it might be somebody who cares so much, trying so hard to protect people from the fallout of a meltdown, which is a manifestation of intense overwhelm that tends to ricochet in less predictable ways. Sometimes an absence of external emotional expression is because love and empathy and care is felt so deeply that it is paralysing. Other times, love can look or feel different in some people – and just because love might come in a different colour, it doesn’t mean that it is any less real, or any less forever.
Forming and maintaining relationships is going to be hard for many people with autism just because of how much energy is required to survive. But when people are accurately reflected back at themselves and enjoyed for who they are, the isolation that comes from sometimes feeling locked out of the world is so much less acute. I know that we can’t really expect to prevent all the hardships that can come with autism in a world that is only designed to accommodate one neurotype. But autism shouldn’t only be about trying to make the bad things less bad … or hanging on by the skin of your teeth until you can't anymore. There are just different ways of seeing the world - none of them are wrong, and all of them are real. Everybody deserves to exist in a world where they are not on fire. And the first step is to believe somebody when they tell you about the flames that you can't see.
