I’m autistic and don’t speak. Here’s what I want you to know

My travels with autism started long before my diagnosis at the age of three years and three months.

My family noticed autistic features from around 15 months of age. I never looked at people and did not respond when called. I lined up toys instead of playing with them. When I wanted something, I took people’s hand to get it for me. I had frequent meltdowns in busy environments or when routines changed unexpectedly, but I couldn’t let people know why I was upset.

I was later diagnosed with autism. My family grieved to hear that I might never be able to lead an independent or full life.

But my mother wasted no time in organising supports. Soon, my days were filled with home-based intensive behavioural programs, speech therapy and other supports. But unfortunately, I never learned to speak.

But I learned to communicate another way

A turning point came when I was nine. I began learning how to communicate with a type of augmentative and alternative communication known as supported typing. I type on a machine with a keyboard, called a Lightwriter, which speaks what I type. Another person touches my shoulder as I type. This touch helps me be aware of my body, and helps me focus on communicating my message.

I used supported typing at school and now at university, where I am a PhD candidate. I’m researching neurodiversity in autistic people with minimal, unreliable, or no speech, or those with complex communication and high support needs.

With supported typing, I am able to live life more fully, to give a TEDx talk, one of the first by a nonspeaker, and to write my autobiography. I used supported typing to write this article.

How common is it for an autistic person to not speak?

Autism affects how people communicate, interact and perceive the world. Autistic people show differences in social communication as well as narrow interests, such as Lego or trains.

In 2022, there were 290,900 autistic Australians. About one-third are nonspeaking.

This nonspeaking autistic community is socially vulnerable and frequently experience nonacceptance and exclusion. As a member of this community, I am driven to bust some myths.

Myth 1: we don’t use language

Autistic nonspeakers cannot use speech to communicate. But many of us are verbal, that is, we understand and use language.

I am a visual thinker, and I sense my world in pictures and images. Initially, speech was just sounds without meaning. Around six years of age, I realised words were used to represent things and to communicate. By linking people’s speech to their behaviour, I began to understand the symbolic nature of language, which helped me communicate.

Because of sensory and movement differences, autistic people with complex communication needs require support to communicate, do routine activities and participate socially.

For instance, physical touch to our hand, arm or shoulder provides feedback on our position, balance and movement to help us point to pictures, spell or type. Support workers also help us focus and remain calm so we can communicate.

Myth 2: we don’t understand your mind

Autistic people, especially those with complex communication needs, need extra time to decode, make sense of, and abstract meaning from experiences.

But with effort and time, many autistic nonspeakers can empathise and understand other people’s minds.

This can involve using social stories to understand mental and emotional states. These teach us about social situations and how to participate. They can be used to describe what to expect ahead of time. They can give us time to rehearse and we can draw on them during the situation in real life.

For example, when meeting someone for the first time, we may feel overwhelmed. We use a social story to know what to expect, to sit at a comfortable distance to introduce ourselves, to ask and respond to questions. The story helps us process new information, and suggests how to tell people when we are overloaded and need space to chill.

Giving us the time, space and permission to process social situations helps us navigate social life.

Myth 3: we rock, hum and sometimes scream or run off for no reason

Autistic people, especially those with complex communication needs, can feel unsafe in busy environments. For example, bright lights or noises from people talking and moving around cause sensory overload and distress. This leads to increased stress levels and a reduced ability to respond appropriately.

Autistic nonspeakers may use various strategies to manage the overload and lessen this sensory distress. This may include lying down, staring at blinking lights or revolving objects, humming to block out overwhelming sensations, as well as rocking, spinning or weaving our bodies to restore a sense of balance. These behaviours allow us to self-regulate.

However, when these strategies are insufficient, autistic nonspeakers may behave in unconventional ways such as screaming, running off or having meltdowns.

Such behaviours do not arise because we don’t understand how to act appropriately. They occur when we feel highly unsafe and anxious in demanding situations.

When a quiet space is available, we will be able to chill and regain feelings of safety and control, without resorting to concerning behaviours.

The next time

So the next time you meet an autistic person who doesn’t speak, please meet us halfway. Give us the time and space to process and think about how to reply.