Why some autistic people don’t speak

Around a third of autistic people – children and adults alike – are unable to share what they want using speech.

You may have heard the term “non-verbal” to describe them, but that’s nearly always inaccurate. Many people without reliable speech still make noises which those close to them can interpret. Others use a small number of words or phrases.

You may also have heard of the term “selective mutism”. It means being unable to speak in some situations, and isn’t limited to autistic people. The NHS says that it is linked to anxiety in children.

But the word “selective” can be misleading. It doesn’t mean someone is choosing not to speak. For many autistic people, speaking can be impossible, extremely difficult, or even exhausting. So called “selective mutism” also isn’t limited to childhood.

For this reason, experts and those impacted increasingly use the term “semi-speaking”. It covers a wide range of people, from those who can say a few words now and then, to those who can speak fluently most of the time but not always.

Speech ability can also change depending on the environment. For example, being in a loud and bright space like a hospital or being in pain, may make it harder to speak. Many autistic people find it harder – and more unpleasant – to speak on the telephone.

Being able to communicate is crucial, not least because it provides a way of sharing needs. Not having your needs met is associated with distress. In autistic people this can lead to meltdowns, and it can lead to “burnout” in the long-term, which is associated with a loss of skills.

Alternatives to speech

When speech is impossible or too tiring, a variety of augmentative and alternative communication tools can help. Sign languages, including simplified languages like Makaton, can be used. Although because they rely on a communication partner who understands the language, they can be ineffective.

Paper-based methods, such as “picture exchange”, use cards to represent concepts or objects, such as “food” or a specific object, such as “banana”. But these can be frustrating. Imagine having to sort through a pile of cards to find the right word before speaking, and knowing that someone else chose those words for you.

The advent of tablets and smartphones has revolutionised augmentative and alternative communication applications. These apps allow the user to press a button representing words, or type messages that the device reads aloud. Both Android and Apple offer simple versions built into their systems.

But some autistic people do not find any of these strategies accessible. They may need a communication partner to work with them using a letter board to spell out words. While some critics claim that partners may falsely attribute words to the autistic person, eye-tracking research suggests this is not true.

Two women sitting at a desk with tablets. — Different types of augmentative and alternative communication are available on tablets and smartphones. ABO PHOTOGRAPHY/Shutterstock

Research shows that alternative communication methods benefit autistic adolescents and adults. But the majority of autistic people who struggle to speak still lack access to effective communication tools. This is probably in part due to a lack of speech and language therapists who could support parents and carers to better facilitate communication.

A common misconception is that non-speaking autistic people don’t understand or have nothing to communicate. But a significant body of research shows these autistic people are literate and have thoughts. Studies with mothers of non-speaking children demonstrate that deep connections can exist without spoken words.

It’s essential that autistic people, regardless of age, have a way to communicate. Spoken words should not be valued above other methods, and alternative communication should never be taken away by parents, teachers, or caregivers. For many autistic people, using alternatives to speech is not a choice – it’s a lifeline.

This article is republished from The Conversation, a nonprofit, independent news organization bringing you facts and trustworthy analysis to help you make sense of our complex world. It was written by: Aimee Grant, Swansea University

Aimee Grant receives funding from The Wellcome Trust, MRC and ESRC.