It generally starts with a feeling of becoming "out of tune". Sounds, smells, visual information rise up and mix in a suffocating chaos. Something like poison in the blood spreads in the whole body. Tingles make their way through my arms, heavy like lead. And the curtain closes down. If I’m still conscious, I can’t communicate anymore with the outside world. Now the sounds and smells seem to drift very far away, all what lies in the field of my vision happens to be bright and blurred. I’ve been put on stand by mode.

- © V. Vilkrée
© V. Vilkrée

From some minutes to the loss of consciousness, these hyperventilation attacks occur when my brain can’t process the flows of perceptive information anymore.

I’ve been diagnosed with Asperger syndrome at the age of 40. This syndrome belongs to the autism-spectrum disorders and gained international recognition only at the beginning of the 1990’s. On the contrary to low- or high-functioning autism, there is generally no speech delay during early childhood, and social difficulties often start only in the kindergarten.

That’s one of the reasons why it took so long to link its different symptoms with autism. That’s also why so many adults are still not diagnosed, and amongst those who lately are, only a minority seem to have a stable job—for which they are often overqualified.

An invisible disability

The attacks I’ve described, if they often occur, are not the syndrome. Not everyone with Asperger syndrome suffers from them. I could almost say that these short-circuits are not what causes me the highest pain: they are visible and identified by others as something highly uncommon. It’s not the case of most of the difficulties linked to this sort of autism: although they may vary highly from person to person, what is common to all are problems related to social situations.

Socialization is a foreign language to me. Through experience, I’ve learnt to translate social interactions between people, but only if I’m not involved in the situation. I need to be a scientist observing insects. When it’s not the case, I’m overwhelmed very quickly by the dataflow I need to process to draw conclusions. With more than one or two unknown interlocutors, and with additional visual, auditory and olfactory inputs from the surroundings, it becomes simply impossible.

This is an example—amongst a lot of others—of the difficulty to meet people. The distance needed to simply cope with an everyday interaction is mostly misinterpreted. It can be taken for arrogance, self-importance, contempt, falseness, pathological shyness... fill the blanks. As the causes of these malfunctionings are not visible, one is considered as a "normal" person behaving inappropriately. External signs of the Asperger syndrome can be taken for a lot of things—except autism.

Moreover, these misunderstandings multiply because of a number of other typical disabilities: incapability of having a "standard" conversation, of distinguishing the interlocutor’s voice from the background noise, difficulty of making eye contacts, etc.—all of them having their source in oversensitivity.

Oversensitivity

Non-autistic people don’t realize it, but they are very invasive in their behaviours. The use of integrated codes to interact has made them loose the sensibility of what they initiate around them. They perceive very little of it. In this respect, I would say that I consider myself closer to animals: the slightest move, sound, unknown smell around me is perceived—consciously or not—as a potential threat.

In the presence of somebody of whom I don’t know the patterns of behaviours, I feel constantly bombarded. A person entering my "private" space is enough to create an inner tension which can be quite invalidating. This is probably an early defence signal developed in situations I could not cope with.

But it is also obviously linked to the oversensitivity of my senses, or more accurately, to my lack of filters. Non-autistic people generally possess perceptive and cultural filters they are not even aware of, which make them adapt to their environment. Surrounding sounds, smells, lights, are not perceived by them directly. On the contrary, most autistics receive everything intensely.

Furthermore, this oversensitivity is not limited to the five senses. Emotions stagnate almost always to the full too, and not only one’s own: the idea that autistics lack empathy is simply false. On the contrary, when others’ emotions are perceived, it is often so intense that it becomes overwhelming. Generally, the result is that it is impossible to respond in the moment. From outside, it certainly looks like no perception at all.

Theories start to emerge, stating that autism does not reside in a blindness to others but rather in a too strong perception of them—a general oversensitivity leading autistic people to the need of lessening or cutting outside stimuli by withdrawal. I can’t naturally tell if such a statement is globally valid. I do however, feel this approach to be very accurate.

Filters

A cap, sunglasses, earplugs, help in making surroundings less aggressive. Yet without elaborating strategies to cope with some typical situations, without choosing whichever possible type of environment one can move in, they would simply be inefficient.

Repetitive behaviours, special interests, focus on details rather than global perception, social isolation—common to most autistic people—look to me like some of the filters that came to rescue us from the overwhelming outside world. They helped sorting coherent patterns out of the perceptual and emotional chaos to build a self which holds together, by slowing down the invasive flow of information.

Now, those necessary filters—predominantly not chosen—can also become invalidating and breed suffering in everyday life. It is at this point that a diagnosis can be a salvation. Not only can it bring these self-defence mechanisms up to consciousness, but it can also help to replace a filter by a more accurate one, more compatible with the way of living one has chosen. It is a very hard and long journey, but the only one towards freedom.

A place to live

A society like ours gathers all what an autistic person can’t cope with: speed, noise, exhaust smells and tons of perfumes, stress, omnipresent visual stimuli, non-stop communication—a brutal chaos without a pause button. But I also challenge the reader to find a job offer which does not contain the Holy Trinity: resistance to stress, team work abilities and flexibility. What is with no doubt already a burden for everyone, becomes a hell for autistics. In concrete terms, this means that, in addition to a constant stress driving to withdrawal, the way toward autonomy is severely obstructed.

Various helps and adjustments from states regarding autistic people have started being developed since a decade, the process is however only at its beginning, the diversity of disorders on the autism-spectrum being so far still largely misjudged—if not unknown at all.

In this respect, I’d like to blow away some emerging clichés about "aspies" and autistics in general: no, we’re not all computer freaks with noses glued on a screen. Neither would we be happy to proceed to repetitive senseless tasks at work just because we need a predictable environment, nor have we necessarily superpowers like guessing which day of the week was October 12th in 1492.

In history, strangeness and difference often led dominants to dehumanize minorities, most of the time to make "otherness" fit into their own vision of the world (and finally to exploit them). Today, I would say that we are at this point with autism: autistic people need their dignity, not judgements. We need to be accepted for what we are: we are not worse, we are not better than non-autistics. We are different. We have a different intelligence. Our perception differs and this is no illness.

Autism burns inside, autism has shaped my tormented self, but autism is part of me. I was born with it, I’ll die with it. I’m determined to improve my filters, to transform them in order to choose my way more freely, to act on my fierce connection with the world, but also, and above all, to fight for the unique jewels, that the burns are nevertheless able to secrete.