Most people know that Autistic people and non Autistic people communicate differently from each other. One commonly known difference is that Autistic people don’t usually use their body and 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 develops differently, and is 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 someone who has developed verbal speech. “Non-speaking” means someone who has not developed verbal speech ability. “Language” means how someone understands and uses language and words to communicate and express themselves.
What Does being Non-speaking mean?
This means I have not developed verbal speech and am not able to communicate using verbal speech. I communicate by text to speech programs, sign language, writing and communication cards.
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 sentences with verbal speech and are not able to express themselves with verbal speech.
Echolalia is a type of communication that both non-speaking, and speaking, Autistics use. Echolalia is repeating phrases borrowed from books, movies, television, songs or other people. 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 or cerebral palsy, or co-occurring neurological disability – like apraxia of speech – that causes or makes it hard to for them to form spoken words. Most non-speaking Autistics though, do not have a known co-occurring physical or neurological disability that effects verbal speech ability.
Some 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 main difference between an Autistic person having verbal speech ability, and another not having verbal speech ability, is sound (verbal words). This is wrong.
The really big communication difference between a speaking Autistic and a non-speaking Autistic, I think, is “language”, not sounds. “Language” means “how” language is learnt and understood; its vocabulary and how that vocabulary is used. Language development in non-speaking Autistics is very different from language development in speaking people. This means vocabulary and language expression can be very different too.
As a non-speaking person, I have learnt language though my eyes and I communicate my words 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 different.
It means too that the language learning, communication and support needs of a non speaking Autistic can be very, very different from the learning and communication support 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:
Another difference between speaking and non speaking, is verbal speech is immediate. Its pace is fast. People with verbal speech communicate their ideas and information quickly. Non verbal communication is much slower and takes time. This changes the trajectory of conversations.
You can see in this the language code differences in how I use language, my ‘native language’ is very different to a speaking persons language. 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.
I 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. Its even harder when people don’t use proper grammar, have an accent or pronounce words poorly. Its harder because it takes away 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 active in class like 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!
I have a friend, Kathy. She is Autistic too. Kathy told me a story about the Blob Fish. People used to think it was just a blobby fish. It even won an award in 2013 for the world’s ugliest creature, which is a bit mean to the Blob Fish. But then, scientists learned it was actually a deep sea fish that looks like most normal fish when it is in an environment that is right for it. When it is dragged to the ocean surface though, and doesn’t have the environment of the deep ocean that it needs, it expands outwards, gets blobby and can’t function as a fish. Autistic people are a bit like Blob fish. When we are in the environment that is right for us, and given the right kind of support to be ourselves, we can do really well, and even do things that other people can’t do. But when we are forced to live in an environment that isn’t right for us, we don’t do well at all.
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 Communication (PECS) images, its was very hard for me to be heard. I wanted to communicate and tried hard to communicate, but I didn’t know “how” and 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 songs that said a bit of what thought was in my head. 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. Usually when I am overwhelmed, scared, or really tired, I cannot decode language at all. I am also not able to put the thoughts in my mind into language or words. 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, 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.
Autistics who have spoken language can 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 when they are not Autistic – to have delayed speech development.
Delays in speech development is normal in Autistic children. Delayed speech development is very different from not having the ability to develop and use verbal speech. It is not helpful, I think, to label young children non-verbal when they are simply developing language and speech in line with their own individual development trajectory. 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 options are also helpful to pre-verbal Autistic children, children with delayed speech development and children who do have verbal speech ability but are overwhelmed.
- PECS (Picture Exchange Communication System). PECS uses picture exchange, where a person hands over a picture to request or express something. PECS 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.
This article is written from my perspective as a non-speaking Autistic. Although it includes the collaborative thoughts of several non-speaking Autistics, it should not be read as a representation of the experiences 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.