Many know that Autistic people communicate differently from people who are not Autistic. One commonly known social communication difference is that Autistic people don’t usually use their body, face and eyes to convey the meaning of what they are saying in the same way, or as fluidly, as non-Autistic people do.
Much less known – even among Autistics people – is how the estimated 25 percent of Autistic people who do not have verbal speech ability, learn, acquire, interpret, understand and use language.
In this article:
- What is non-speaking; what does being non speaking mean?
- How language can develop differently and be used differently in non-speaking Autistics.
- The difference between non-speaking and non-communicative.
- “Typical” speech development in Autistic children.
- How to support communication in non-speaking Autistics
In this article “verbal speech” means words that come out of someone’s mouth. “Speaking people’s language” refers to the way language is learnt, acquired and used by most who develop verbal speech. “Non-speaking” means someone who has not developed, and does not have typical ability to acquire verbal speech ability. “Language” means how someone understands and uses words to communicate and express themselves.
What Does Non-speaking mean?
In this article non-speaking refers to a person, over the age of six, who has not developed verbal speech ability. That is they do not communicate with words expressed verbally.
It does not refer to:
- people who have verbal speech ability but experience temporary loss of verbal speech skills when overwhelmed,
- people who have verbal speech ability but are consistently unable to speak in specific environments consequent of Selective / Situational Mutism.
- children with delayed speech development or unclear speech.
Around 25 – 30% of Autistic people do not develop verbal speech. Researchers have done studies using electroencephalograms and MRI’s and measuring eye gaze to better understand the differences that exist in non-speaking Autistic people. At the moment though, no-one really knows what those neurological differences are. What they have identified is that non-speaking Autistics often understand much more than they are able to communicate.
Some non-speaking Autistics have developed a small amount of verbal speech but are not able to use that verbal speech to communicate in a way other people understand. I will give an example. An Autistic person with limited verbal speech might say “car” to mean “I want to go for a drive” but would not be able to answer (using verbal speech) “where do you want to drive”. They are not able to form a sentence with verbal speech and are not able to express themselves with verbal speech.
Echolalia is a type of communication that is commonly associated with speaking Autistics, but is also used by non-speaking Autistics (in alternative communication formats, eg sign, writing, voice activated systems). Echolalia is repeating phrases borrowed from books, movies, television, songs or other people. As someone who communicates non-verbally, I use written echolalia to communicate or say what I want when I am overwhelmed or when I am having trouble translating my language to a speaking persons language. Speaking people use verbal echolalia to communicate or say a thing when they are young (still developing their verbal speech) or when overwhelmed, or sometimes for enjoyment.
Some non-speaking Autistic people have a co-occurring physical disability – like muscular dystrophy, cerebral palsy, other motor planning challenge or co-occurring neurological disability, like apraxia of speech, that makes it hard to for them to form spoken words.
Many non-speaking Autistics though, do not have a known co-occurring physical or neurological disability that effects verbal speech development.
Many Autistic people who have spoken language are not able to communicate verbally very well (and sometimes not at all) when very anxious or when overwhelmed by there sensory environment. This is a very different difficulty though from the language acquisition and communication challenges of being a non-speaking Autistic, and needs a different type of support.
How Is Language Processing Different in Non-Speaking Autistics?
Many people think the only difference between an Autistic person having verbal speech ability, and another not having verbal speech ability, is sound (verbal words).
Often though, a really big and much more challenging communication difference between a speaking Autistic and a non-speaking Autistic, is how language is learnt and understood. Language development in non-speaking Autistics can be very different from language development in speaking people. This means developing vocabulary and language expression can be very different, and is a seperate challenge from communication methods.
As a non-speaking person, I have learnt language though my eyes and I communicate through my eyes too – through writing, through sign language, through picture exchange. Speaking people learnt language through their ears, and communicate sounds through their mouth, even if they are “visual thinkers”. This difference in how language is acquired and used means the vocabulary is different, the nuances are different, the structure of the language and how words are formed is different, and our relationship with language is very different.
It means too that the language learning needs of a non speaking Autistic can be very, very different from the language learning needs of an Autistic person who has verbal speech ability.
I will give an example.
This is my next paragraph in my language code (the words / vocabulary that forms in my mind from my thought images):
Boing Boing Boing. Words bounce. A speeding car named “quick”. The snail watching. Sliding all day.
This is the same paragraph translated into speaking persons language:
A difference between speaking and non speaking, is verbal speech is immediate. Its pace is fast. Verbal speech communicates ideas and information quickly. Non-verbal communication is slower. It takes time.
The non-speaking communicator usually misses out on having their say. This changes course of how a conversation would have gone, if non-verbal communication was as fast paced as verbal speech.
You can see in this, the language code differences in how I use language. My ‘native language’ is images and is very different to a speaking persons language code. Much of what people say, the words they use, do not have a definition in how I understand language.
The different way I understand and use language means I am always needing to translate my thoughts and vocabulary into the speaking persons language. This takes a lot of work and effort all of the time. When I don’t do well enough translating my thoughts and vocabulary, I am invisible to everyone around me – I don’t get heard and I am not understood. Ability to translate non-speaking code into speaking people’s language varies in all non-speaking Autistics. Some are very skilled in translating and some find it very difficult to translate at all.
I also spend a lot of time not really understanding what speaking people are saying. Most of the time I am only able to decode and understand bits of what they say and then have to guess what they mean. I find it even more difficult when speaking people don’t use proper grammar, have an accent or pronounce words poorly. Its harder because it takes away many of the clues I have learnt to decode speaking peoples language.
This is often a problem at school because it means I often miss out on properly learning what is being taught, and I miss out on asking questions about my school work. I miss out on being able to be as active in as my friends.
I get excited when I do understand what someone says. When I understand all of what they say it is like getting a yummy treat or receiving the best ever present at Christmas!
Is Non-speaking the same as Non-communicative (not having ability to communicate)
Non-speaking Autistics want to communicate and feel very frustrated and sad when they cannot communicate in a way other people understand.
When I was smaller, and had not learnt to sign and did not understand Picture Exchange images, it was very hard for me to be heard. I wanted to communicate and tried hard to communicate, but I didn’t know “how”. I didn’t understand why people seemed to understand other kids, and each other, but didn’t understand me. I would point and push and wail and scream. I would look at things I wanted, or play music that felt like the image was in my brain. I would show I was frightened or confused by running away and hiding. Most of the time though, people didn’t understand what I was communicating.
When I am overwhelmed it becomes very, very hard for me to decode speaking people’s language and words. Often when I am overwhelmed, scared, or really tired, I cannot decode speaking people’s language at all. I am also not able to put the thoughts in my mind into any language or speaking people’s words when overwhelmed.
When I am not able to decode spoken language and not able to put my own thoughts into language, I am non communicative. This doesn’t mean I do not have thoughts wanting to be communicated, it means I have no way, no capacity and no ability to interact or communicate at that moment.
I will give an example.
When I started school, all the energy and effort I needed to be in class, meant that by morning tea time, I had no space in my brain anymore to decode speaking language or to put my thoughts, needs and wants into language. For a whole year I would not eat or drink all day long, even if it was very hot and I was very thirsty or hungry. I would not drink or eat because I knew by morning tea time onwards, I would have no ability to ask or tell that I needed to go to the toilet. It didn’t matter that I had communication cards to help me. When I am overwhelmed the thought in my brain and the speaking language word “toilet” on the card, do not connect in my brain.
When overwhelmed, Autistics who have spoken language often temporarily loose the ability to communicate too. Non-communicative is when the Autistic person has no ability to communicate, verbally or non verbally. This happens when an Autistic person is overwhelmed.
Will My Non-Speaking Child Learn to Talk?
The majority – around 70% (according to NIH, the National Institute of Health) – of Autistic children do develop verbal speech. The majority of this 70% become fluent enough to communicate needs and wants, verbally, by six years of age. Some who are not yet fluent by age six, have usually developed at least some words and verbal echolia style of communicating. A very small group, around 1 – 3% develop verbal speech in their teens or beyond.
Very often parents will label their two or three or four year old “non-verbal”. They will do this even though it is not unusual for children under five years old – even if they are not Autistic – to have delayed speech development.
Delays in speech development are common in Autistic children. Delayed speech development is very different from not having the ability to develop and use verbal speech. I don’t think it is very helpful to label young children non-verbal when they are simply developing language and speech in line with their own individual development timing.
Many Autistic adults and many therapists will often refer to children with delayed speech ability as “preverbal” rather than “nonverbal”, to more accurately describe developmental trajectory.
Supporting Non-verbal Communication
Many options are available to support communication development in non-speaking Autistic children. Many of these communication methods are also helpful to pre-verbal Autistic children, children with delayed speech development and children who do have verbal speech ability but are overwhelmed.
- Picture Exchange. This is where a person shows or hands over a picture to request or express something. Picture exchange can be particularly helpful for younger children and Autistic people with co-occurring Intellectual disability.
- Sign Language. Sign language uses signs, symbols and expressions to communicate. Many countries have their own sign language and recognise that language as an official language of the Deaf community. “Makaton” is key word sign that is used in many different countries.
- Spelling Boards. Spelling boards provide the user who has difficulty with fine and gross motor skills a valid way to communicate, by spelling out words and sentences.
- Voice Output Systems. Voice output systems provides a user the ability to generate digital speech by typing words into the system, and then generating those words as digital speech when the person presses a button or symbol. Text to speech apps are an example of voice output systems.
- Communication cards. Communication cards provide limited means of communicating key needs and wants. They tend to be most useful as a “back up” communication option or as an alternative way for speaking Autistics to communicate when overwhelmed.
When communicating with a non-speaking Autistic person, it can be help to:
- Say less
- Say it at a slower pace.
- Pause between words and phrases.
- Visibly respond to communication , eg nodding in agreement
- Use visual supports, eg drawings of complex concepts
- Seek to learn the non-speaking persons language and how they express themselves through conscious observation of their gestures, role playing, music, eye gaze, movement, etc.
- Be aware of the environment and that competing noise, busyness and / or an environment the Autistic person is not comfortable in, will make decoding your speaking language more difficult for the non-speaking Autistic person.
- To read more on communicating non-verbally / augmentative & alternative communication (AAC) click here.
For a deeper look into language development differences and practical ways to support language development differences, along with supporting non-speaking children in developing friendships, schooling and alternative communication, the “Bouncing Words” documentary (in collaboration with Reframing Autism) is a wonderful starting point.
This article includes the collaborative thoughts and opinions of several non-speaking Autistics. It is not intended as a representation of all non-speaking Autistic people. This is because while all Autistic people share some similarities in processing and communication, and share similar challenges in navigating the world, no single – or even group of Autistic people – can know and speak for the different challenges, life experiences, education, living environments, supports and other privileges, that influence the lived experience of another.