What it’s like to be autistic

An autistic person looks just like you or me. Every one of us is different, but we have certain things in common. We all have difficulties with social communication and interaction, restricted and repetitive behaviours, activities or interests, and most of us have sensory sensitivities.

These things are with us from early childhood, but we – and other people – may not recognise them for many years, or even decades, until stress or exhaustion makes them more pronounced, or we begin examining ourselves and our behaviour more closely. Autism’s effects are widely varied and, often, subtle. That’s why it’s called a spectrum. (Read more about what this means.)

Social communication

As children, some of us start to speak late, babble or focus on single words; a few remain non-speaking their entire lives. Others speak very formally, in an unusual accent or monotone, or rely on echolalia, mimicking words and phrases learned from peers, parents or TV.

Equally, autistic people may be extremely articulate and chatty (like me) but tend to talk at rather than with people, particularly when on the subject of a special interest (me, if I’m honest). We might be unaware we’re saying too much, interrupt at inappropriate times and lack volume control (me, me, me). A lot of us rehearse conversations in our head in an effort to prepare for all eventualities (yup).

We can come across as rude, blunt or cruel when we think we’re just being honest (definitely me). We may lose the ability to speak coherently or altogether in uncomfortable situations or if we’re very upset or stressed (also me). We may struggle to see others’ point of view or take everything we’re told literally (yup), failing to understand sarcasm, metaphor or some kinds of humour (sometimes me).

Interpreting and using facial expressions and body language that seem obvious to others, such as to show boredom or unease with the direction of a conversation, can be a blind spot too. We may not use gestures when talking or we might overuse them – for instance, flapping our hands excessively for emphasis or when upset (me).

Eye contact is frequently an issue. Autistics may avoid it altogether or tolerate it only for limited periods or in certain situations (me), or we might stare inappropriately when interested in someone or something (also me). Hand-eye coordination can be a problem too (oh, yes).

Social interaction

Autistic people may be totally uninterested in others, or might watch from the sidelines, wanting but not knowing how to join in. As children, we often prefer the company of adults, who can be less socially demanding and unpredictable (I did).

In some cases, because we tend to take others at face value, we may be overly trusting, making us especially vulnerable (occasionally me). As we get older, we may be generally quite sociable if in the mood, but at the cost of rapid physical and mental exhaustion (definitely me).

We often find the thought processes and behaviour of others difficult to understand and tricky to predict, which can make us very anxious (yes). Uncertainty of any kind is generally very upsetting (ditto). To make the world easier to understand, we like to focus on the certainty of facts and often ask a lot of questions (no wonder I became a journalist).

The emotions of others can be hard to recognise and take into account or totally overwhelming (yup). We frequently struggle to recognise our own emotions and read what our body is trying to tell us, particularly when it’s negative. We can be in pain, anxious, tired, hungry or generally overwhelmed by input and stimulation, and not realise until we burst into tears or start shouting about something seemingly trivial (known as a meltdown), are felled by a blinding headache or suffer total brain shutdown (all me).

Behaviours and interests

As children, we can find imaginative play baffling and prefer activities that are logical or factual: lining up dolls, building with Lego or arranging toy cars. Making things is also popular, and many of us look for and enjoy the soothing predictability of patterns. (I can identify with all of this.)

What experts call restricted or obsessional interests are common, but we prefer the less judgemental term passions. The old cliché is train spotting but it can be anything from a particular period of history to collecting hairbands. Apart from learning more about autism, mine include writing, exercising (particularly rowing), odd facts, certain breeds of terriers and hounds, and watching snooker and track cycling on TV, two sports I have no interest in ever trying.

Our thinking is frequently very black-and-white; we’re often extremely detail focussed and not good with generalisations or big picture thinking (yes, yes, yes). We may struggle to follow verbal instructions or multi-task (ditto). We tend to like sticking to rules, either our own or those set by officialdom, and when others break them it can be upsetting. Unless, of course, rules are illogical, then they absolutely should be broken (or maybe this is just me?). Fairness and honesty matter a great deal to us too (tick).

Change – whether to routines, arrangements or surroundings – can provoke anxiety, which may manifest as anger (yup). We often have particular ways of organising our possessions and activities, and woe betide anyone who disrupts this (you have been warned).

We may make repetitive noises or movements, in public or only in private, to soothe ourselves, particularly when we’re anxious or stressed (I do).

Sensory sensitivities

These can be general – bright lights, loud noises, crowded places and strong smells (yes to all of those) – or quite specific, such as being unable to eat certain textures of food or touch or wear particular fabrics (yes, again). Light touch may be welcome while firm is not, or vice versa. Hugs and handshakes – from strangers or from anyone – can be especially unwelcome. (For me, it very much depends on the person doing the touching.)

Some autistics also struggle with personal care such as hair washing and showering because of sensory issues related to the feel of soaps and gels, water or towels. (Or this may be because daily life is too time-consuming and exhausting to cope with these additional activities, or because we’re too absorbed in our special interests to care.)

Are you autistic?

If you identify with at least a few things in each of these categories, and haven’t already taken the AQ50 initial diagnostic test, you might want to do it sometime. You may not feel you need to take a test to know you’re autistic, though. If your gut instinct tells you that you are, no matter what those around you say, trust it.

Picture of Alex Morgan: Andy Mills.