What is a loved one thinking? What does that person want? How can we help? When we have questions, we ask. We also expect answers, and that’s a problem for people with nonverbal autism.
People with nonverbal autism still have thoughts, wants, needs, and desires. But they can’t use words to express those inner thoughts.
Some people with nonverbal autism develop speaking skills later in life. Others never gain the power of speech.
Therapy aims to help people learn to communicate via the method that seems best to them. That same therapy can also help families learn how to support someone they love.
Nonverbal Autism Statistics
People with autism spectrum disorder (ASD) often struggle with communication. It’s not at all unusual for people on the spectrum to avoid talking altogether.
According to the Centers for Disease Control and Prevention, about 40% of kids with ASD don’t talk at all. Others may speak just a bit, and they may have communication issues, including:
- Echolalia (repeating a word or phrase).
- Reversing pronouns.
- Talking in a flat or sing-song voice.
- An inability to string several words together into a sentence.
Some kids with autism don’t meet verbal developmental milestones, but they pick up the ability to speak later in life. In a study of the issue, researchers found about 70% of kids not speaking by age 4 could use simple phrases later in life. About half were fluent speakers as adults.
Researchers don’t know why some people have nonverbal autism. They also don’t know what it’s like for these people as they navigate the world around them.
Nonverbal people rarely spark research attention, and little work has been done to understand them.
Diagnosing Nonverbal Autism
An autism spectrum disorder diagnosis begins with interviews. Doctors talk with patients and score responses based on age-appropriate scales. These tests are tough to perform with people unable to answer questions.
Experts say autism-specific tests, geared for those who can’t speak, may help. They include the:
- Autism Diagnostic Observation Schedule, Second Edition.
- Childhood Autism Rating Scale, Third Edition.
Doctors also use physical exams, blood tests, and imaging tests to rule out health conditions that mimic nonverbal autism. A child who can’t hear, or a person with a mouth tumor, may seem uncommunicative, but addressing those problems could allow the person to speak and hear freely. Doctors need to uncover those issues.
Doctors may also lean on outside interviews to help, including:
- Parents. Did the child ever speak? Did they start to speak and then the ability went away? How long has the child been silent? These questions give doctors a clear picture of a child’s past.
- Teachers. Does the child seem alert and attentive at school? Does calling the child’s name grab their attention? What do the child’s grades look like? These answers speak to a child’s abilities outside the home.
- Doctors. Some children see several medical professionals on a path to a diagnosis. Seeing those notes could help the picture come clear.
Researchers know that brain waves in people with nonverbal autism are different than those seen in people with typical speech patterns. In a 2017 study, researchers proved that.
But at the moment, doctors can’t use brain scans or blood tests to determine whether or not someone has autism. They don’t use tests like this to uncover whether someone has the ability to speak and chooses not to, or whether that person is physically incapable of speech.
Instead, doctors lean on interviews and observations to make a diagnosis. Right now, these are the best tools available.
How Therapy Works
Communication skills are critical to independent life and authentic relationships. Sometimes, therapists help people find their voice and speak clearly. Sometimes, therapy helps nonverbal people find other ways to make their thoughts and feelings known.
The National Institutes of Health says parents can do a lot to help young, nonverbal kids learn to speak. They can encourage pre-language skills, such as:
- Body movements. Pointing, touching, and clapping are all valid communication methods.
- Imitation. Kids learn to talk via mimicry. Parents can encourage that step.
- Babbling. Seemingly silly sounds help kids build muscle and practice speech.
Older kids may need targeted therapy to help them use language to serve a purpose. A therapist might use applied behavior analysis (ABA), for example, to help a child learn how to ask for a drink of water or specify the preference of juice over water. Speech therapy can also be critical.
Sometimes, kids never master the act of speech. They might use alt methods, such as a symbol system or sign language. In therapy, the professional and the child can work together to find a method of expression that suits the child and the family.
Parents play an important role in a child’s therapy. Homework lets kids practice between appointments, and parents often administer the lessons. Ensure you understand how each session works, and be prepared to take on the work at home when the therapist is gone.
Living With Someone Who Has Nonverbal Autism
Researchers don’t know enough about people with nonverbal autism. They can’t say that the trait is tied to low intelligence, for example. They don’t quite know why some people with autism talk fluently and others don’t.
But families know that they want to help. There’s plenty they can do.
The National Autistic Society in Europe recommends embracing the person’s preferred mode of communication, including:
- Gestures, such as pointing or reaching.
- Modeling, such as putting your hand on a desired object.
- Tantrums or challenging behaviors.
- Pictorial systems, such as books and computer programs.
Just because the person doesn’t talk doesn’t mean the person has nothing to say. Look for ways to connect via other modes.
Some people with nonverbal autism can understand words quite clearly, but they struggle to speak in response. Others don’t understand words clearly, and they need families to help. When you can:
- Slow down. Don’t batter the person with rapid-fire speech that demands an immediate response. Speak in short sentences with plenty of processing time. Aim to use simple, crisp words.
- Be literal. Don’t use metaphors or jokes when you speak. Be as clear as you can.
- Sprinkle in nonverbal cues. Point to object you’re talking about. Smile when you’re happy. When your words don’t make sense, your body can make things clear.
- Ask for affirmation. Don’t jump to a new topic without checking in first. Ensure the person understood what you said and why.
Autism Speaks also recommends giving your child space to hold up their end of a conversation. That might involve:
- Observation. Don’t look away after asking a question. Watch your child’s face carefully to see if an answer is coming.
- Staying silent. Don’t fill the space with chatter and conversation. Breathing room lets your child talk when it seems right. Give them a chance to feel comfortable before they respond.
- Accepting nonverbal cues. If your child points or gestures at something, consider that communication and respond appropriately. Meet them where they are, and reward them with a response without demanding more.
If you feel frustrated, your child might share that emotion. It’s hard to communicate when everyone feels angry and misunderstood.
Take a step back from lessons when needed, and let your child do the same. Nurture your relationship, and celebrate the successes when they appear. Your child will thank you for it.
- Signs and Symptoms of Autism Spectrum Disorders. (August 2019). Centers for Disease Control and Prevention.
- Study Shows That Many Nonverbal Autistic Children Overcome Severe Language Delays. (March 2013). Autism Speaks.
- The Neglected End of the Autism Spectrum: People With Little Speech. (November 2018). Interactive Autism Network.
- Standard Tests Underestimate Nonverbal Children With Autism. (April 2015). Spectrum.
- Missing Brain Wave May Explain Language Problems in Nonverbal Autism. (November 2017). Spectrum.
- Autism Spectrum Disorder: Communication Problems in Children. (April 2020). National Institutes of Health.
- Communicating. National Autistic Society.
- Helping Your Child with Nonspeaking Autism Talk. (March 2013). Autism Speaks.
- Assessing the Minimally Verbal School-Aged Child With Autism Spectrum Disorder. (December 2013). Autism Research.
- Autism. American Speech-Language-Hearing Association.
- What Is Autism Spectrum Disorder? (August 2018). American Psychiatric Association.
- My Daughter and I Were Diagnosed With Autism on the Same Day. (October 2015). The New York Times.
- Age of First Words Predicts Cognitive Ability and Adaptive Skills in Children With ASD. (February 2013). Journal of Autism and Developmental Disorders.
- New Study Shows How Autism Can Be Measured Through a Non-Verbal Marker. (August 2019). Dartmouth College.
- I Have Nonverbal Autism. Here’s What I Want You to Know. (April 2015). The Mighty.
- Should All Nonverbal Young Children With Autism Immediately Have AAC Taught to Them? Indiana University Bloomington.
- The Neglected End of the Spectrum: People With Little Speech. (November 2018). Interactive Autism Network.