What is 'severe autism'?

And, is it a 'pathology'?

Photo by Richard Hedrick on Unsplash

Many people in the autistic community believe that there is not such thing as severe autism because, as they say ‘either you are autistic or you are not’ and autism can be expressed in all kind of different ways.

I do agree with the last part of the proposition because we have to draw a line somewhere, between ‘allistic’ and ‘autistic’, be it arbitrary. I am a bit more cautious about seeing autism only in a positive — almost romanticised — way because that would allow society to ignore the fact that most autistic people may need help and support at some point in their life, in part, because of the way our society is built.

Whether we like it or not, we see the world through categories and we label them. Trees, cats, mountains, tables, bookshelves — are categories. They helps us navigate the world.

Let’s now consider the human experience category of autism, which represents a distinct way of being human, different from the category of allistic.

Inside the category of autism, which is thought to be a spectrum, there are multiple variations of being autistic. If we examine these variations broadly from the perspective of the support people need, some people in the autistic category can manage to live an independent life and may even be happy. Others - and that’s probably the vast majority - struggle and suffer in silence but still somehow manage to go through life more or less independently. Others, like for instance, those who have limited access to spoken language, might need a lot of support probably for their entire life.

The latter is what is sometimes referred to as ‘severe autism’. ‘Severe autism’ is not a formal ‘diagnosis’. The official label is ‘level 3 autism’ and it’s not defined by its expression but by the kind of support the person may need. This perception is grounded in the deficit-based medical model. Therefore, it focuses on what the person lacks and ignores what the person can do. Besides, all their ‘symptoms’ are behaviours that are deemed ‘pathological’ compared to something: the norm.

But, what if ‘severe’ autism was ‘severe’ only because this mode of being autistic makes a person experience the world in such an intense way that everything in our world is too much for them? And because of that, their strengths and ressources cannot flourish in the society they live in?

Let’s take an example. Imagine someone who has limited verbal language. They have high or extreme everything: high sensory sensitivities (to sound, light, touch…), high emotions, extreme behaviours. If autism was represented by a mixing table, all their cursors would be on ‘high’. They self-regulate by fiercely flapping their hands, rocking back and forth, making weird and loud sounds with their throat, or sometimes touching little objects like pebbles. They have problems getting dressed, taking showers, preparing food and eating. They have intense meltdowns (crying, shouting, sometimes being violent towards themselves or others) whenever their routine is interrupted. They have minimal engagement with other humans likely in part because humans are inconsistent and generate too much emotional chaos.

In our world, and from the outside, this person’s overall presentation would be labelled ‘pathological’.

Now picture the same person in a Zen Buddhist monastery. In this environment, everything is structured and organised around meditation and routine. Sensory stimulation is minimal; the monks spend much of their day in silent meditation, with the remaining time devoted to simple, repetitive chores. Everything follows a set pattern: they wear identical robes, bathe on designated days, and attend lectures on Buddhist teachings at the same time each week. How would our ‘Level 3’ autistic person be perceived in such a setting? And how might they behave? Perhaps they wouldn’t experience as many meltdowns—maybe none at all. Perhaps the other monks would refer to them as ‘The Silent One.’ In such a world, the autistic person might finally have the space to express their strengths and abilities. With their attention to detail, they might even become the caretaker of the monastery's Zen gardens!

What I mean is that what we label as pathological is always relative to a comparison. In our Western world, autistic people struggle to thrive because the demands of daily life are overwhelming. They expend all their energy just trying to exist in such an environment, leaving them with none to express their strengths. I often see comments in autistic support groups echoing this sentiment: people lament that they have no time or energy to engage in their special interests. This happens because the sheer volume of daily obligations, compounded by a society that overcomplicates everything, becomes too much to bear. Most autistic people would require some form of personalised support to be able to do the things they are actually able to do — and even in most cases, excel at doing.

So ‘pathological’ or ‘disabled’ are just the reflexion of what our society considers as ‘abnormal’. It reduces the individual to what they cannot do and ignores what they can do.

Now from a practical point of view, how do we justify that someone needs support if they are not ‘disabled’? Also, do we let the majority of autistic people suffer in silence and struggle by themselves without help? Some people may need punctual support at some point in their life. For instance, some autistic people have a hard time with papers, administration and paying bills. Others have a hard time with the ‘life of the body’ and can’t shower, brush their teeth and eat properly, or even see a doctor when they are sick. Around 80% of autistic individuals have trouble keeping jobs and move from one temporary job to another with periods of unemployed in between.

These 'inabilities' can fluctuate over time. At one stage in their life, a person might be fully capable of working, brushing their teeth, and pursuing their special interests but unable to shower and maintain their home. At other times, they might experience autistic burnout and be unable to do anything at all. What kind of support could effectively meet their needs during these varying phases?

And of course there are those who need support for a lot of things, the ‘level 3 autists’, because they can’t manage on their own for their entire life. How do we justify this is we don’t claim that these people have a ‘lifelong disabling neurodevelopmental disorder’ ? The System designed to provide support is deeply entangled with the medical model, mirroring its rigid framework: you either fit into a predefined category, or you don’t. If your autism is deemed severe enough, you receive assistance. If not, you are sent on your merry way and left to fend for yourself.

This is a serious problem. Not only research grounded in deficit-based medical model reduces individual to their disabilities but society — the System — does the same. One has to be stamped ‘disabled’ in order to get some support from the collectivity. So once more, the entire person is reduced to their shortcomings.

Obviously, I have more questions than answers. But I believe that neither the deficit-based medical model nor the social disability model help autistic people thrive. They just help them survive. That’s why I think we need a new paradigm based on the autistic inner experience, one that acknowledges a person’s fluctuating difficulties and provides support for them while simultaneously fostering conditions that allow them to express their abilities. Perhaps that’s my personal bias, but I firmly believe that unless we embrace the idea that every human being has the potential to thrive, we cannot call ourselves humanists.