How to Guide
|It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people?
— Ellen Notbohm, author of international bestseller ‘Ten Things Every Child With Autism Wishes You Knew’
Language note: Although individual preferences exist, surveys of the autistic community consistently show that autistic people prefer identity-first language rather than person-first language (i.e., “autistic person” rather than “person with autism”). This article reflects the community’s language preference. In addition, the Autistic Self-Advocacy Network reports that the community preference is to refer to” nonspeaking” people rather than “nonverbal” because many autistic people who do not use speech to communicate use words to communicate in other ways.
From an early age, we are taught to rely on speech as a primary means of communication with other people. However, some autistic people do not use spoken language as a means of communication, and others can stop speaking during periods of stress or burnout. They may also use limited words or struggle with stuttering. Some falsely assume that a nonspeaking autistic person is unable to make decisions about their life or care, or that a nonspeaking autistic person is less intelligent than those who use spoken language.
What to Know About Raising Neurodivergent Kids?
Not all nonspeaking autistic people are verbally mute. If the individual uses some sounds, ask them what sounds indicate certain words. Learn the language that works for them, and use that for communication. Adapting to their alternative language will allow you to understand their needs and let them communicate using the method that is comfortable for them. This, in turn, reduces stress, burnout, and risk for trauma for the autistic person.
How Autistic People Communicate?
The National Institute of Health estimates that approximately 25% to 35% of autistic people are either nonspeaking or minimally speaking, meaning that they can verbalize some words but do not primarily rely on speech to communicate. Some therapies and interventions emphasize making the autistic person use verbal language, but this is often harmful to the autistic person.
Autism and Masking
Often, neurotypical people who work with autistic people rely on treatments and interventions that encourage autistic people to “mask” or act in a more neurotypical way. Masking might make an autistic person behave in a way that is more consistent with neurotypical standards; however, research shows that holding autistic people to neurotypical standards rather than meeting their needs is stressful and causes autistic people to develop post-traumatic stress disorder at ten times the rate of non-autistic people. Some confuse non-speaking autism with selective mutism (or situational mutism as ‘selective’ implies choice. However, when an autistic person stops speaking due to burnout, this is related to fatigue while selective mutism occurs as a result of anxiety. When a nonspeaking autistic person never uses spoken language, this is also not related to anxiety but indicates a different communication style. However, nonspeaking autistic people can communicate effectively in other ways if those around them are willing to listen.2 Learn strategies to understand and communicate with nonspeaking autistic people below.
How do people on the autism spectrum communicate?
How autistic people on the spectrum communicate is as varied as the experience of autism itself. Communication is the exchange of information including ideas, needs, desires and feelings. Communication can also be made in written form and includes reading and writing. One of the core criteria for autism is defined as persistent difficulty with social communication and social interaction. Many children on the autism spectrum have a difference in their development of speech and language. For some, speech and language may be delayed, disordered, or may not develop. An absence of being able to understand language and express language using words and phrases may be the first indicator that an individual is suspected of having Autism Spectrum Disorder (ASD). Communication also includes the understanding and use of non-verbal communicative behaviours (e.g. eye-contact, and body use, including personal space as well as gestures).
Types of communication include:
- Language: The way we represent information – what words mean and how we put them together.
Receptive – the understanding of language
Expressive – the use of language also known as sign language
- Speech: A verbal means of communicating – using sounds to make words.
- Non-verbal methods: gesture, facial, expression, eye contact, etc.
- Pragmatics: The way in which individuals use language in social situations. It includes following the ‘unspoken’ rules of conversations including turn-taking.
Some people on the autism spectrum might find it hard to hold a conversation, or even start one. They can also have difficulty understanding facial expressions and inferring communicative intent based on context. If you’re on the autism spectrum and are good at talking, you generally take things literally and mean what you say. You may have been told that you are always very honest. It also may mean that you find it confusing when people use language to hide their feelings or use language in a way that doesn’t make their meaning clear.
You might also be great at talking about your favourite topics, enthusiastically sharing lots of detailed information, or pointing out things that neurotypical people might not notice. There are, of course, challenges for people on the autism spectrum when it comes to communication. These can be minimal – like learning to recognise social cues – or impact significantly, making all forms of communication challenging. People with autism can also find it hard to filter out less important information and can become overwhelmed if too much information is presented. ‘Sensory overload’ can even happen through eye contact, which is why many people on the spectrum don’t like to make or hold eye contact with others. And even those who are good at communicating can miss the unspoken aspects of conversation, which can make the world a confusing and isolating place.
How does autism impact communication?
All people with autism experience ‘differences’ in communication, but the impact of these differences in everyday life varies. According to Speech Pathology Australia, some children with autism achieve their preschool speech and language milestones, only to be identified as having autism when they start school where the social-communication demands increase. These children may talk fluently but have significant difficulty with the social aspects of language, such as knowing how to initiate and maintain a conversation and understanding meaning of other people’s body language. For other children, ‘differences’ in communication are clearly seen early in life, with children not learning to talk without additional support.
Here are some communication characteristics used to help diagnose autism:
Young children (up to six years)
May be delayed in babbling and using words, may talk less or use speech in a repetitive way. This can include the use of learned phrases or scripts. They may also be slow to respond to their name, or not respond at all, and be unresponsive to social smiling. Some children with autism have difficulty using facial expressions and gestures to communicate. They may be fixated on their own interests and show little ability to share their interests with others.
Older children and teenagers (6-16 years)
Communication can be characterised by very limited use of language or they may use it excessively, they may have a ‘flat’ tone to their voice and repeat certain phrases over and over. They might talk ‘at’ others rather than having a ‘back and forth’ conversation, or talk mostly about their topics of interest. In interactions with others, they may not understand facial expressions and non-verbal cues, have difficulty with small talk and have a limited range of responses in social situations. They may also find it difficult to use gestures, facial expressions and eye contact when talking to others.
Adults (17 years and over)
Are often similar to teenagers and have difficulty engaging in ‘small talk’. People with autism can have a disordered pattern to acquiring language skills. While some individuals develop language and are able to use this independently, others may not develop functional communication and some may not ever verbally communicate. There is strong evidence for the benefits of early intervention, beginning as early as possible in the child’s life. There are many therapies designed specifically to build communication and interaction skills. Speech Therapists and Pathologists are the key professionals to assist with assessment and intervention of communication (and swallowing) delays and disorders.
It’s important to note that while being delayed to develop speech and language is a common trait of autism, not all children who have delays or difficulties with non-verbal communication are autistic. An autism diagnosis takes into consideration many other criteria. However, if you are concerned about this don’t ‘wait and see’. Speak with Speech Pathology Australia on 1300 368 835 or a Speech Pathologist in your area: through local community health centres and not-for-profit organisations, or by calling private practices.
Communication is not just talking. There are many visual and other cues that help us understand what another person is saying. So, it’s not just what someone says that helps us understand them, but how they say it, their facial expression, body language, gestures, eye contact, and the context they’re saying it in. People on the autism spectrum have difficulty processing non-verbal cues or may also use non-verbal communicative methods themselves. This means they might not hold eye contact or use body language in expected ways, they may misunderstand or misuse gestures, or have a lack of, or different, facial expressions, which can make their social interactions challenging and sometimes confusing.
Many individuals on the spectrum use echolalia, which means they repeat words or phrases over and over, often using them without meaning or using them in an unusual context. They might repeat the words of familiar people (parents, teachers), or they might repeat sentences from their favourite video. Individuals may demonstrate immediate echolalia (repetition of words or phrases straight after they hear them) and delayed echolalia (repeating words and phrases at a later time). According to The Hanen Centre, there are many reasons an individual might use echolalia for a communicative purpose:
- To ask for things – a child might say “Do you want a cookie?” to ask for a cookie, as he’s heard others offer cookies this way before.
- To start an interaction or keep it going – a child might initiate a game of Hide and Seek by saying a line from the game, like “Ready or not, here I come!”.
- To draw someone’s attention to something – a child might draw attention to something he’s noticed by using a line he’s heard before to draw attention to something else, like “It’s a bird, it’s a plane, it’s Superman!”.
- To protest something – if a child imitates “You don’t want to wear those pants?” as his parent is getting out his clothes, he might really mean “I don’t want to wear those pants”.
- To answer yes – if a child imitates “Do you want some yogurt?” right after he’s been asked that question, he may actually want some yogurt and really mean “yes”.
Autism communication strategies
There are a lot of tools that can help people on the spectrum develop their language and communication skills. A Speech Therapist or Pathologist is the lead professional in the assessment of an individual’s understanding and use of language and can provide information about you or your child’s level of language development. They can also provide support planning for intervention, and advise on which strategies can be best used to support the development of communicative skills.
Visual supports are tools that help communicate and build language skills. This can incorporate the use of symbols, photos, written words, and objects to help people with autism learn and understand language, process information, and communicate. Many people on the autism spectrum respond well to visual information and visual information can be processed and referred to over time, whereas spoken communication is instant and disappears quickly. Visuals can involve communication books or boards that use images and/or words on cards to help the individual learn the word and its meaning. The individual can point to the image when they want to communicate. For example, if they are hungry, they can point to an image of food. As the child learns more symbols and words, they can use them to create sentences and to answer questions. Others can also use them to communicate with the child. The Picture Exchange Communication System can be used in the development of intentional and functional communication. Other forms of Alternative and Augmentative Communication (AAC) are discussed below.
Another autism communication support tool is known as a visual or picture schedule. This helps individuals learn the steps of a routine, like getting ready for bed. A series of pictures shows the steps in order and over time they learn each step. Visual schedules can also be used to show a person on the spectrum what is happening next or show when there is a change in routine. As people on the spectrum generally don’t like change, this can help them prepare for a change and cope with it more easily. This enables the language surrounding change to be more easily understood and allow individuals to refer back to schedules throughout the task and throughout their day.
Augmentative and alternative communication
Augmentative and alternative communication (AAC), helps individuals who cannot talk or are very hard to understand. AAC can be used across all environments and at all times, it’s not only for use in therapy. AAC includes:
- Sign language
- Pictures, photos, objects, or videos
- Written words
- Computers, tablets, or other electronic devices
AAC can help many individuals with autism and can even assist with developing spoken communication.
There are two main types of AAC:
- Unaided AAC: Unaided AAC systems use hand signs and gestures, either with speech or on their own. Hand signing, such as Key Word Sign, is a form of sign language that can be used to assist with speech. It works by making the sign for a particular word, along with the sound and picture.
- Aided AAC: Aided AAC systems can be low or high-tech.
Low-tech autism communication strategy – these are usually paper-based and include visual supports like cards and picture books, photos, and communication boards. This also includes hand signs. Basically, any tool that isn’t electronic is considered low-tech
High-tech autism communication strategy – there are a range of electronic communication aids. These range from apps you can use on a smartphone or tablet to sophisticated computer systems and hand-held speech-generating devices.
Speech generation devices either play pre-recorded words via a switch or button or sound out text that is typed into them. Using the previous example, a child who is hungry can press the ‘food’ picture button and the device will say, ‘I want to eat’. While these tools can be used to replace speech, they can also be used to help people develop speech. They do this by helping people to recognize sound patterns and can be used with visual aids to build language skills. These systems can also help children learn words as they begin to associate the sound and picture with each other. They also help by slowing down communication, giving the child more time to process the information and avoid becoming overloaded.
Many in the Deaf community use sign language to communicate, and some nonspeaking hearing people also use this language to communicate. There are hundreds of different sign languages used around the world, and in the United States, American Sign Language (ASL) is the most common.5 Sign language uses hand gestures and facial expressions instead of vocalized words, and ASL has a unique grammatical structure. If a hearing person uses ASL to communicate, they can often still understand things said to them and respond in sign. It should not be expected that verbal communication is the standard and folks that use sign language should not be required to read lips or speak. If an autistic person you know is nonspeaking some or all of the time, they might use ASL to communicate. At a minimum, you can learn the ASL alphabet to help you understand them. If you are autistic and are nonspeaking some or all of the time, learning ASL could help you communicate without having to use spoken language.
Written or Typed Communication
Many nonspeaking autistic people can communicate using a phone, tablet, computer, or even paper and pen. Text-based communication is an easy alternative to spoken words because it uses the same language in written instead of spoken format. As with sign language, if the person using written communication can hear, they can respond to spoken language in writing. Thus, caregivers can read what an autistic person has just typed.
Sometimes, autistic people might not want or be able to use written or spelled words to communicate their needs. However, these individuals can still communicate their needs. For example, by using a tablet or other electronic device, they can pull images that represent what they need to show caregivers. Caregivers can also provide images or charts that the nonspeaking person can use to communicate by pointing to the corresponding image. Let the nonspeaking person indicate which images they want to use to signify different needs. Some needs are universal, like indicating hunger or thirst. Available images should also include comfort items, interests, and important people.
In addition to phones, tablets, and other electronic devices, specific communication tools exist to help nonspeaking autistic people communicate. These tools are known as Augmentative and Alternative Communication (AAC). AAC is often used when someone is nonspeaking because they can keep the device on hand to communicate. If possible, the nonspeaking autistic person should try out various options and use the one that works best for them.
Many different AAC devices exist, including:
- BIGmack Communicator: This device allows the individual to record phrases and words to replay as needed. Since some autistic people communicate using echolalia (repeating words or phrases), they may find this method of communication comfortable and familiar.
- Picture Exchange Communication System (PECS): This kind of device uses images and pictures to communicate, which can be particularly helpful for people who do not use written words in addition to spoken communication.
- Touch Chat: This type of communication device allows the user to press buttons indicating what they want to say, and the device verbalizes what they entered.
- Dynavox: Similar to TouchChat, this device uses both button pressing and head movements, giving the user options for input.
How to support successful communication with people on the spectrum?
- Be aware of your communication style and how much-spoken language you use. Modify your language if you feel that the individual has not understood, e.g., use clear, simplified instructions, or provide additional processing time before repeating an instruction/ direction
- Support individuals to take turns in conversation, or provide additional question prompts if you have misunderstood their message.
- Be specific with questions you ask and support understanding of what is not explicitly stated (e.g., making inferences). Change communication to match context or the needs of the listener (e.g. talking differently to a child than to an adult).
- Provide specific descriptions of objects/ items
When asking them to do something, break it into ‘first this, then that’ steps and provide instructions in chronological order. ‘First, put your shoes on, then pick up your bag’.
- Use pictures and written information to complement instructions/ directions/ conversation/ spoken language.
- Communicate with the individual regardless of whether or they are demonstrating inappropriate eye contact and body language
- Recognise that repetitive behaviours such as rocking, or flapping, may be used to convey how an individual is feeling, e.g., anxious or excited
- Use visuals/ social stories/ social scripts/ visual schedules to support an individual to cope/ adjust to changes in routine.
- Provide access to rewards, motivators, or reinforcement after engagement in structured tasks.
- Using nonliteral or ambiguous meanings of language (e.g., idioms, humour, metaphors, or multiple meanings that depend on the context for interpretation).
- Using open ended or rhetorical questions: how are you feeling?
- Asking questions that have multiple meanings or multiple responses, and are context dependent.
- Using vague or conceptual descriptions – e.g. “he was salty” rather than “he was angry”
- Multi-step verbal instructions/ directions particularly when the environment is noisy/ busy or when the individual appears distracted
- Ignoring the individual or excluding them from conversations even if they are demonstrating difficulties with non-verbal communication (eye-contact, gestures and body language)
- Asking the individual to stop behaviours such as flapping, rocking, or spinning.
- Surprises and changing routines without forewarning or appropriate supports to cope with change.
- Inhibiting the individual access to preferred activities after engagement in structured tasks or interaction.
There are many ways that a nonspeaking autistic person might communicate, and their support system can use the following communication styles and techniques to understand what the autistic person is trying to say. We need to be aware of how autistics communicate and work with them and not against them. I hope after reading this article that you now appreciate how inaccurate this terminology can be.
Further, I hope you’re encouraged by the number of methods you can use to teach non-speaking autistics to communicate and be involved in their learning. In the end, when we presume competence, we’re better able to support all of our children. It’s important to teach non-autistic children and adults to engage in social skills activities that help them better understand and respect autistic social skills.
Please don’t force an autistic child to make eye contact with you. Further, don’t speak to your non-speaking autistic child with the expectation of a verbal response. Allow them to communicate as is natural for them. Do your best, as an adult, to meet them where they are Also, this helps other parents, educators, students, and our community learn how to be more inclusive and compassionate toward everyone.