Illustration by Marcelina Jagielka
This column is titled ‘The 1%” because it’s estimated that 1 in 100 people are on the autistic spectrum.
What is the autistic spectrum?
It’s called the autistic spectrum because of the spectrum of traits that autistic people can have and the differing magnitudes of those traits, not because some people are more autistic than others (something I used to think). All autistic people have the same diagnosis – Autistic Spectrum Disorder. However, we have different support needs which are divided into low, medium and high support needs. I have low support needs which is sometimes referred to as ‘high functioning’ autism.
What is autism?
Autism is a life-long neurological condition and developmental disorder. It can include an intellectual disorder but it doesn’t have to. The central parts of autism are to do with sensitivity, social interaction and repetitive/restrictive behaviour. Sensitivity is over- or under-sensitivity to light, sound, touch, taste and smell. Personally, I’m very sensitive to loud noises. They feel very visceral, like walls are closing in on me. Light can also be a problem, if I’m overwhelmed I can’t really cope with light; sometimes I’ve had to hide in a wardrobe or under a desk to calm down in darkness. Some autistic people hate being touched or need to be touched with a certain pressure whereas others can be very tactile.
Social interaction is hard for autistic people. Many can’t read facial expression, tone and body language the same way that non-autistic people can. We can find it difficult to read people (easily at least) and we can be very hard to read – monotone voices, limited facial expressions and body language. Autism can come with difficulty speaking. Some autistic people are completely non-verbal and we might speak differently to others: different intonation, speech patterns, and word choices. Moreover, we can take things literally and not recognise sarcasm and jokes. Struggling with identifying social rules is a common autistic trait. It’s kind of like playing Mao: you have to guess the rules and the more you don’t know, instead of getting drunk, you get stressed and struggle identifying rules even more. We can’t always tell how other people are feeling, which means we may come off as insensitive. Expressing our own emotions can also be challenging, as is eye contact. Some autistic people might repeat what is said to them (echolalia) or need extra time to interpret conversations. All of this combined makes everyday interactions hard; I agonise over and fear just running into people in the street in case I inadvertently come off as rude or uninterested because I didn’t stop when I should or misjudged how long an interaction should be.
Mimicking and masking are ways of coping with social interactions and are part of ‘camouflaging’. Mimicking is exactly what it sounds like: we mimic behaviours that we see other people display. Masking is suppressing and hiding autistic traits; it’s basically acting and takes a lot of energy. Women tend to be better at camouflaging than men which is part of the reason why we’re, on average, diagnosed later on in life- when we are diagnosed. Women are estimated to be three times less likely to be diagnosed than men. Personally, I don’t want to mask anymore. The only word for it is exhausting and I feel like I’m pretending to be something that I’m not, and that hurts.
Routine and Rituals
Routine and rituals are very important to autistic people. Sometimes we may even have OCD traits. In general, we tend to like rules and these rules can be incredibly arbitrary, but it doesn’t make them feel any less obligatory (unfortunately). The world is overwhelming. Since I was about 15 the phrase ‘the world is too much and I’m not enough’ has echoed around my head time and time again. Rules and routine help make the world more manageable, so changes to routine, particularly unplanned changes, can be difficult to cope with. We may wear the same clothes like a uniform and do the same things at the same times in the same ways day after day. ‘Stimming’ refers to repetitive movements such as hand-flapping which can help calm autistic people down but can also just be enjoyable. Change is hard for everyone, I’ve been told, but for autistic people it’s particularly hard and can be terrifying; it can mean not doing things that we want to do simply because it requires change.
Conclusion and hopes for the column
This is just a brief introduction to autism. If it sounds like a lot, that’s because it is. It impacts every facet of my life and the lives of other autistic people. In general, I dislike comparisons between autistic people and robots or technology but the best way I can describe the ubiquity of autism is that it’s like a processing system on a computer. Being conscious is a constant stream of information processing and I process everything through an autistic lens. There are no breaks, I will never feel like what it feels to be non-autistic. There’s a lot that I haven’t mentioned here – meltdowns, shutdowns, sensory overload and weird memories and obsessions (all which can be big parts of autism) – so you’ll have to read the rest of my column to find out more!
There is nothing at all wrong with being autistic. It’s like being left-handed. There’s nothing wrong with it in a vacuum but it’s hard in reality as the world is built for right-handed people – in the same way it’s built for non-autistic people. I have selfish intentions for writing this column and this article in particular: I want to be understood. There might be nothing wrong with being autistic, but the world can make it feel like there is, I just have to hope that if more people understand autism that they’ll be kinder to us and make life a lot easier in the process.