Reimagining communication for people with non-verbal autism

Over a quarter of children with autism are non-verbal, yet the cause remains unknown

Globally, approximately 1 in 100 children are diagnosed with autism spectrum disorder (ASD).

ASD is a complex condition caused by changes to the brain. It is characterised by difficulty adapting to the surrounding environment, resulting in behavioural and psychological challenges. The development of ASD has been associated with a variety of factors, including family history, fetal development, and genetic and chromosomal disorders. But the exact cause remains unknown.

Around 25% to 30% of people with ASD will not develop functional language or are minimally verbal. This subgroup of people with ASD who never learn to speak more than a few words have non-verbal autism.

Non-verbal autism has no known cause and is most common among people with severe ASD and high-support needs, who are rarely able to live independently and require comprehensive care. This, compounded by the fact that ASD symptoms may change over time, challenges our ability to provide high-quality care and support for people with non-verbal autism at every stage of life.

Supporting non-verbal autism into adulthood

Communication characteristics of people with ASD evolve throughout childhood. No specific factor is likely responsible for language development in people with ASD, but many non-verbal autistic children do overcome severe language delays at a young age.

The lack of understanding of the causes and permanency of non-verbal autism means that the support required must adapt over time. A variety of interventions to improve the quality of life for people with ASD and their carers have been established and can be tailored to the needs of the individual. These include psychotherapy, medication, behavioural therapies and modifications to professional and educational environments.

Being non-verbal does not prevent meaningful communication; creative, empathetic and flexible approaches are needed to ensure the best outcomes. For example, psychotherapists may notably extend their patience, clarify responses and use communication aids. Comprehensive support for people with non-verbal autism is crucial to ensure they can live as independently as possible.

Innovation is driving change

Non-verbal communication is diverse and includes body language, movement, facial expressions, gestures, eye contact, noises and touch. Innovation is required to maximise non-verbal communication and develop alternative communication opportunities for people with non-verbal autism.

Augmentative or alternative communication (AAC) aids play a crucial role to assist people in communicating more effectively. They include any means of communication aside from traditional speech. AAC devices can involve:

• no technology (e.g. pen and paper, picture boards)
• some technology (e.g. buttons to press to communicate a message)
• advanced technology (e.g. touch-screen devices).

Most AAC aids display a communication board of photos, symbols or illustrations for the person to gesture at, point to, press or blink at to express themselves (as shown in this video).

High-technology AAC devices can be customised to better support a step-wise introduction to communication, enabling the user to grow with them as they are ready for more options. Professor Ralf Schlosser has dedicated his career to repurposing mobile technologies to support alternative communication, allowing people to participate in spontaneous communication by themselves. Artificial intelligence is now being used to enable personalised voices for speech-generating devices. Such devices aim to increase the independence and self-esteem of people with non-verbal autism by providing a less ‘robotic sounding’ voice – one that is more representative of the individual.

More research is needed to confirm whether AAC can lead to improvements in non-verbal communication. But the increasing availability of and access to alternative communication for those with non-verbal autism may help boost public awareness and lead to more proactive steps being taken to provide support. For example, just last month, a mother of a non-verbal child praised her local council in England for the introduction of a communication board in her local play park, leading to a formal commitment to introduce more communication aids in the area.

Communication is a human right

Article 19 of the United Nations Declaration of Human Rights protects the right ‘to freedom of opinion and expression’. As the UK marks National Non-speaking/Non-verbal Awareness Day, I urge you to consider a reality where you are not able to communicate your thoughts and feelings to those who matter most to you. This is the lived experience of many people with non-verbal autism. Yet, with the right support and the acceptance of alternative forms of communication, these individuals have the opportunity to be heard.

The opinions expressed in this blog are those of the author and do not necessarily represent the views of The Health Policy Partnership.