Nonspeaking but Not Unheard: Insights from Disability Support Workers on Communication with Nonspeaking Service Users.

Wonderful ways of powerful communication

Opens new doors that were never there.

We yell, laugh, cry, we now are aware.

You will help me reach my destination.

– A poem from “A Tiny Space”, by nonspeaking autistic author, fifi coo.

<<998 words – 5min read>>

Imagine you woke up one day and lost the ability to speak. You’d probably feel devastated, trapped, unable to express your thoughts or needs…

Being nonspeaking is a massive disadvantage in our “speech-centric, hearing-privileged society”.

Yet, communication is fluid 🌊 – it can take on many forms. You don’t only use speech to communicate. Have a think about:

• What you do with your body when you’re feeling uncomfortable 🧍
• What you do with your face when you’re happy 😄
• What you do with your hands when you want someone’s attention 👋

Accessible Communication is Essential for Nonspeaking People 

There are many reasons why some people don’t speak. We’ll specifically focus on nonspeaking adults with certain conditions:

• Autism: restricted, repetitive behaviours;  difficulties with social interaction and communication – approximately 30% are nonspeaking.

• Learning disability: difficulties understanding information, learning new skills, and communicating.

Accessible communication is a basic human right for people with these conditions, as recognised by the United Nations.

Alternative and Augmentative Communication (AAC) is the practice of accessible communication. It includes anything that’s not speech: signing, pictures, iPads, body language + much more. 

Click here for a nice summary of AAC.

‼️Supporting AAC is key to ensuring good quality of life for nonspeaking people.‼️

Addressing a Gap In Research

Communication is a two-way street – support workers who work with nonspeaking service users are responsible for helping them communicate using AAC.

But research on AAC focuses on the views of parents, psychologists and speech-language therapists – not support workers. While they are all experts in their own right, support workers often spend the most time with nonspeaking service users.

Yet, support workers receive very different training than other professionals, and we never really hear about what AAC methods actually work for them.

With this gap in our understanding of current best AAC practice, this study aimed to answer the questions:

Which communication approaches do support workers use in their practice, and how?

What are the perspectives of support workers on communication between themselves and nonspeaking service users ?

What We Did

• We interviewed 9 support workers from a London-based charity, Centre 404, which supports people with learning disabilities and autism.

• We asked support workers about how they communicate with nonspeaking service users in 10 different situations, and asked them to elaborate on their own experiences and opinions.

• Interviews were analysed qualitatively, using a framework from the Mencap report on best AAC practice from family carers and other professionals.

• We changed the framework slightly to fit our data. We removed communication approaches not mentioned in the interviews and added some new approaches.

• Organising the data with this framework helped us to look at each communication approach individually, and then compare its use between our participants.

• We grouped participants’ approaches and perspectives into three analytic categories.

What We Found

Support workers use a wide range of approaches when communicating with nonspeaking individuals. (1) Formal approaches generally mapped onto Mencap (with less use of ‘high-tech’ methods). Participants also highlighted several (2) Informal approaches and (3) Barriers and concerns, which haven’t been explored before.

We developed a ‘map’ to visualise how support workers communicate with nonspeaking service users:

There’s quite a lot on this map, so here’s a brief summary:

Category 1 – Formal approaches, divided into:

• structured (e.g., signing, pictures) 👍
• hybrid (‘formal’, but with an intuitive nature, like music). 🎶

Category 2 – Informal approaches (which enable formal approaches) included:

• building trust (by being consistent and patient) 👭
• adapting, through trial and error (asking lots of yes/no questions), and encouraging autonomy (ensuring the service user can make choices whenever possible). 🙇‍♂️

Category 3 – Barriers and Concerns:

• fear of getting it wrong when communicating 😟
• the need for specific staff training 🤷‍♀️
• individual differences between staff supporting the same service user. 👥

Here’s a unique example of best practice (from Category 1): using music to communicate:

A Real-Life Example of AAC

Take a look at this video from the YouTube channel “For the Love of Gabe”. It takes a while for the communication to actually happen (2:15 and 3:38), but it shows you the reality of AAC. Notice the patience and consistent encouragement of choice making, both of which were methods that worked for our sample.

Key Takeaways

• This study reported how AAC is currently used in real-world settings, and highlighted new approaches to explore in the future (e.g., ‘trial and error’ approach).

• Overall, support workers emphasised intuitive/unstructured methods (e.g., body language) more than structured methods (e.g., signs).

• This could be because of a lack of specific training, or lack of time in the demanding role of a support worker. 

• This knowledge is important because it shows us what currently works, and what should be studied further. This will help ensure that nonspeaking people’s rights to communicate are being upheld as best as possible. 

• Limitation: nonspeaking individuals were not included in the study. It’s important that they can express what communication methods they prefer. ‼️

• Future research (currently in the works at Centre 404) will use these results to look at ways to gather the views of nonspeaking service users.

References

Coo, F. (2018). A tiny space. Ethos Books. https://escholarship.org/content/qt39q1b8hj/qt39q1b8hj.pdf?t=s3e1mo 

Goldbart, J., & Caton, S. (2010). Communication and people with the most complex needs: What works and why this is essential. https://e-space.mmu.ac.uk/198309/1/Mencap%20Comms_guide_dec_10.pdf 

National Institute for Health and Care Excellence (NICE). (2024). Autism in Adults. https://cks.nice.org.uk/topics/autism-in-adults/ 

National Institute for Health and Care Excellence (NICE). (2023). Learning Disabilities: What Is it? https://cks.nice.org.uk/topics/learning-disabilities/background-information/definition/

Savarese, D. (2022). Disrupting the Garden Walls. Open Mind School. https://www.openmindschool.org/post/disrupting-the-garden-walls 

Tager-Flusberg, H., & Kasari, C. (2013). Minimally verbal school-aged children with autism spectrum disorder: the neglected end of the spectrum. Autism research: official journal of the International Society for Autism Research, 6(6), 468–478. https://doi.org/10.1002/aur.1329

United Nations (2006) Convention on the Rights of Persons with Disabilities. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html 

Credits:

Youtube Video: https://youtu.be/Yq8HYzJPVCk?si=_X500YbifX9sUxbg

Images: Freepik