“The most important thing in communication is to hear what isn’t being said.” – Peter Drucker

Think about the last time you were in a country where you didn’t speak the language: how did you manage to get your message across? Maybe you pointed, used hand gestures, or relied on facial expressions.

Whilst we communicate on a daily basis, describing what this actually means can be difficult. According to the American Psychological Association, communication is “the transmission of information, which may be by verbal (oral or written) or nonverbal means”. Most of us might associate communication with using words and language, but how does this work when someone doesn’t have typical language access?

Non-speaking individuals – sometimes referred to as non-verbal – are those who experience significant communication difficulties, meaning that they produce little to no spoken words. This is often due to a range of different neurodevelopmental disorders, the most well-known of which is autism spectrum disorder (ASD). An estimated 25-30% of the autistic population is estimated to be non-speaking, whilst those with intellectual disabilities also experience differing levels of communication difficulties.

However, this doesn’t mean that they can’t communicate. Non-speaking people often use augmentative and alternative communication (AAC), which encompasses all the ways someone could communicate besides talking. This includes using signs, body language, facial expressions, and communication systems such as an app on a tablet.

My study: Learning from family

It’s important to understand communication beyond words because, for non-speaking adults, communication is not only about exchanging information; it’s about creating a sense of belonging (Martin et al., 2022). Although there are guidelines and training for support workers, the lived experiences of family members are often overlooked, and access to support varies (Ferguson et al., 2024). As such, we know only a little about what communication can look like in everyday family life. 

That’s exactly what I wanted to find out in my study, by asking two things:

1. What are family members’ experiences of communicating with their non-speaking relatives?
2. What do they think helps or gets in the way of successful communication?

In collaboration with Centre 404, I recruited the help of 6 people who had a non-speaking relative to answer these questions. This included 3 mothers, 1 sister, 1 father, and 1 brother-in-law. I conducted one-to-one interviews with each person using pre-established questions that I felt would best help me to understand the nature of their communication. Using a technique called reflexive thematic analysis, I then looked at these answers altogether and tried to find the key patterns that answered my questions.

What I found:

Knowing the individual

For you to know these things, you have to know him well […] You have to know his usual behaviour, otherwise you’re not going to know. (P1)

You internalise a load of stuff and it becomes intuition without you really […] thinking about it. (P5)

Through many years of shared experiences, family members built a deep understanding of their loved ones, including their likes, dislikes, communication preferences, and much more. They developed a sort of “instinct” when it came to deciphering their relatives’ communication, and they often shared this knowledge with other people.

Familiarity and routine

So that does tie in with the autistic behaviour as well because obviously, we know that people with autism struggle with […] lack of routine. I wonder if a lot of that is to do with, like, control or communication. It’s like […] if you’re completely out of control with your environment you’re not sure what’s coming up in the future or […] what it’s likely to look like, that’s quite anxiety provoking. (P5)

Building on this deep understanding, familiar routines, places, and language also played a big role in helping family members and their non-speaking relatives communicate. Talking about daily routine, using set phrases, and drawing on what was physically around them made communication a lot smoother. 

Personalised communication style

It’s a completely unique kind of communication style; it’s not like I modify my regular communication style. it’s a blended kind of communication based on what we’ve found works. And I think that other people that communicate with him do it differently as well […] we all kind of find our own kind of way. […] So, it’s kind of a mixture. (P5)

Families created a personalised communication system, which consisted of many different strategies and tools, depending on what they found worked best. Their relatives also did the same, often showing a stark contrast in how they communicated with those who knew them well and didn’t know them at all. Communication was very much a two-sided affair.

A sense of uncertainty

There will be times, obviously when we’re still trying to figure it out […] sometimes you know there’s a few times where we just won’t get it and everybody gives up. So he gives up. We give up. (P6)

Despite all these strategies to ease communication difficulties, communication was sometimes shrouded in a sense of uncertainty. Often, this was specifically related to a misunderstanding in the moment, but at other times, it was a general sense of frustration at not really knowing what their relative was thinking, especially their hopes and dreams. This didn’t discourage them, but made them more eager to find new ways of communicating.

Final takeaway

My study highlights how important it is to recognise family members as experts in their non-speaking relatives’ lives. Communication, even when it looks different to what we’re used to, is still about connection, adaptation, understanding, and shared meaning. So the next time you meet someone who doesn’t speak, remember: communication isn’t about words, it’s about connection. 

References

Ferguson, E. F., Barnett, M. L., Goodwin, J. W., & Vernon, T. W. (2024). “There is No Help:” Caregiver Perspectives on Service Needs for Adolescents and Adults with Profound Autism. Journal of autism and developmental disorders, 10.1007/s10803-024-06451-x. Advance online publication. https://doi.org/10.1007/s10803-024-06451-x

Martin, A. M., Andrews, T., Goldbart, J., & Landers, M. (2022). Reconciling communication repertoires: navigating interactions involving persons with severe/profound intellectual disability, a classic grounded theory study. Journal of intellectual disability research : JIDR, 66(4), 332–352. https://doi.org/10.1111/jir.12921