The Neglected End of the Autism Spectrum: People with Little Speech
Joan Drebing waited for those first words from her twin babies. Just as infants have an inborn drive to learn to talk, parents seem programmed to take delight in hearing their voices for the first time. Although her daughter began speaking, her son, Ryan, seemed stalled at "mama." When he was 3, his family learned why: he has autism spectrum disorder (ASD).
Despite speech-language therapy, and other interventions, Ryan's speech did not catch up to his twin's. Now age 8, he has little functional speech, like 25 to 30 percent of people with autism. "We know what his voice sounds like, but we don't know what his talking sounds like," Mrs. Drebing said, a little wistfully.
Despite a surge in research and public interest in autism in recent decades, we still do not know why functional speech remains elusive for some people with autism. "Little is known about this group because they are rarely the focus of research," according to a 2013 article by some of the top U.S. experts in autism.1
As a result, misperceptions may linger about these children and adults, about how much language they understand, how they learn, and the best ways to help them communicate. "When someone is nonverbal," Mrs. Drebing said, "people tend to think they're lower-functioning than they actually are. We need more data on the true intellectual level of people who are nonverbal."
Two prominent autism experts agree. In 2013 article, they noted, "we know almost nothing about minimally verbal older children." They called upon their fellow researchers to begin learning more about those "who, for too long, have remained at the neglected end of the autism spectrum."2
The Spectrum of Speech in Autism
Several decades ago, many, if not most, people diagnosed with autism had little or no spoken language. At the turn of the 21st century, experts noted that up to one half of children and adults with ASD "do not use speech functionally."3 But the percentage of verbal people with autism has been growing, largely for two reasons. Early diagnosis and treatment became more common – and effective. Also, the borders of the autism diagnosis have expanded to include people with milder symptoms or no history of a speech delay.
Today people with autism are found along a wide spectrum, from highly verbal adults who give speeches or lead discussions at conferences, to those who do not speak at all. People with little or no speech may be called minimally verbal or nonverbal, or, if they're very young, pre-verbal.
Some researchers and clinicians worry that these terms lack precise definitions and may mislead families.2 For instance, there is no consensus as to how many words a person needs to say to be considered verbal. But experts do agree that verbal people use combinations of words "spontaneously" and "regularly," to communicate with others.3
Speech-language therapists generally do not focus on how many words children use, but rather on how they use them, explained Kate Smidl, a speech-language pathologist at Kennedy Krieger Institute's Neurobehavioral Unit and Outpatient Speech-Language Clinic, in Baltimore. Can a child request something he wants, ask a question, or make a comment? "We're really looking at how functional a child's language is," she said. A child who repeats sentences from a movie, out of context – an autism symptom called echolalia – may be considered to have little functional speech. So may a child who cannot form any words at all, she explained.
No one knows exactly why, despite speech-language therapy and other interventions, some children do not learn to speak fluently. Helen Tager-Flusberg PhD, an expert in this field, was among those who issued the call for more research on this population in 2013. In a recent email interview, she said research is pointing at several possibilities.
Some children may have problems with auditory processing, by which their brains interpret the words that they hear. Others may have "oromotor impairments" such as symptoms of childhood apraxia of speech, she said. Apraxia affects the child's ability to plan and sequence the mouth and tongue movements needed to speak. "There are also differences in brain anatomy – particularly connectivity in the speech production network. Still, there is much that we don’t yet know as so little research has been done," said Dr. Tager-Flusberg, professor of psychological and brain sciences at Boston University, where she directs the Center for Autism Research Excellence.
One "common assumption" is that all children who fail to speak have lower intelligence scores, according to an article by Drs. Tager-Flusberg and Connie Kasari.2 However, they point out, that is not universally true. For example, some of these children score well on nonverbal intelligence tests4 and can understand a lot of spoken language.5, 6
Take Ryan, who demonstrates his understanding of words he cannot say. When Mrs. Drebing asked Ryan if he wanted to walk their dog, he responded by putting away his iPad and getting his shoes to go outside. His actions showed he understood the question – and communicated an enthusiastic "yes" even if he did not say the word.
"If You Want Something, Let Me Know"
"Lisa" rested her head on a desk in her classroom at the Kennedy Krieger Institute LEAP Program, which stands for Lifeskills and Education for Students with Autism and Pervasive Behavioral Challenges. Many school districts in Maryland send students to LEAP, in Baltimore, if those districts cannot meet a student's special needs in one of their own schools.
It was a dreary Monday morning, and Lisa (not her real name) could not keep her eyes open. Stefanie Carberry, a speech- language pathologist, sat across from the sleepy teenager, holding two iPad electronic tablets. One was loaded with TouchChat HD, a communication application for people who have trouble speaking, and the other had a video game involving bubbles.
"All right, we are going to do some bubble pop," Ms. Carberry said cheerfully. Lisa lifted her head and distractingly touches the iPad screen just enough to elicit the "thwat thwat" noise of bubbles popping.
"What did you just play?" Ms. Carberry asked.
Lisa roused again and reached for the iPad loaded with TouchChat. She scrolled through screens of small squares containing pictures and words. By pressing the squares in order, Lisa formed a simple sentence. She touched the "I play" square and a computer voice said "I play," then she touched "bubbles," and the computer voice said "bubbles." TouchChat is a form of augmentative and alternative communication (AAC), in this case a technology that helps someone communicate by touching pictures, words or letters, on their own.
Lisa's head sank to the desk. Ms. Carberry said, "If you want something, let me know. Otherwise we will keep working."
That was Lisa's cue, and she took it. She raised her head and with one finger flipped through the iPad's picture squares to select the ones she wanted spoken aloud: "I want to sit at my desk." That sentence earned Lisa a few minutes of uninterrupted rest time.
As Ms. Carberry later explained, staff at LEAP are preparing their older students for work or day programs they will attend when public school services end at age 21. People who do not speak, like Lisa, will need ways to communicate that they want a break or need something.
The Communication-Behavior Link
Communication may be the key to preventing some of the challenging behaviors that can occur in youth with autism. The "prevailing assumption"7 is that youth who cannot communicate become frustrated, which can fuel behaviors such as hitting, self-injury, running away, screaming, and tantrums. Youth who are nonverbal or minimally verbal have been overrepresented among patients with autism admitted to special psychiatric units at six hospitals, according to researchers in the Autism Inpatient Collection study.8
Interestingly, that autism inpatient study has presented a more nuanced view of the role of communication in certain challenging behaviors. Researchers found that coping skills were more important than verbal ones when it came to aggression and angry outbursts.7 That's not to say that communication doesn't matter. They speculated that having a way to communicate may improve someone's behavior because it increases his ability to cope with day-to-day problems.7
Communication as a Basic Human Need
Experts agree that everyone needs a way to communicate – whether it be through spoken words, or augmentative and alternative communication, a broad category that includes sign language, gestures, pictures, written words, and electronic devices like the one Lisa used. The American Speech-Language-Hearing Association, which is made up of speech-language pathologists and audiologists, believes effective communication should be "accessible and achievable for all."9
A youngster's first exposure to AAC is often in the form of a small laminated square, containing a simple drawing and word. "Young children often begin their AAC journey with low-technology devices, such as picture icons or topic boards," explained Ms. Smidl. "Children start to learn that the pictures represent their belongings, toys or food, and they can start requesting things, like cookies. A child learns to point to a picture of a cookie or exchange a picture of a cookie, and they then get an actual cookie. That teaches them the cause and effect of communication," Ms. Smidl said.
One such picture icon system is the Picture Exchange Communication System (PECS), which relies on behavioral principles. The National Autism Center, which examines the scientific evidence for autism interventions, says PECS are an "emerging intervention" that needs more study, while another review found PECS to be probably effective.10, 11
In the past, some people have worried that using picture icons or other forms of alternative communication might interfere with a child's speech-language development. But that is not true, Ms. Smidl said. Some research says that AAC does not "impede speech,"12 while other studies say it is linked to gains in speech, either alone or as part of a broader intervention.13,14
Other communications options are more high-tech. Children and adults may use electronic speech-generating devices, such as GoTalk systems, or software applications designed for mobile devices and phones. Speech-language therapists can help select an AAC system that would work for a particular student.
In fact, discussion of such systems should be part of special education meetings for students with communication disabilities. U.S. special education law, the Individuals with Disabilities Education Act, requires public school systems to provide "assistive technology" devices and services, such as AAC, to students with disabilities as required by their special education plans.15 The law applies to students up to age 21.
What's the Difference between Augmentative and Facilitated Communication?
Augmentative communication is sometimes confused with facilitated communication, or FC, because they may use similar devices. But the two are different. In augmentative communication, the student with a disability touches the device or types on a keyboard by himself. In FC, however, a facilitator touches the student – typically on the hand or arm – while he types, points to letters, or uses a communication device.
According to the American Speech-Language-Hearing Association, "There is no scientific evidence of the validity of FC, and there is extensive scientific evidence—produced over several decades and across several countries—that messages are authored by the 'facilitator' rather than the person with a disability."16 The National Autism Center reported, "there is little or no evidence in the scientific literature that allows us to draw firm conclusions about [its] effectiveness with individuals with ASD."10
The Challenges of Being Minimally Verbal
The answers (and there are likely many factors) will come from many different disciplines, and it is important to bring into this area of ASD research people who have the expertise in other areas, such as speech science, auditory science, neuroscience, and genetics.
When you live in a world that revolves around language, having little of it can complicate almost everything, including what researchers know about you. Many autism studies exclude children with limited language or significant developmental delays, because the tests needed for the research usually require the child to understand a certain amount of language.2 To address that problem, four researchers rated a list of standard assessments used in autism research. Eighteen assessments were "well-suited for use with minimally verbal children," 25 could be used "with some caution" and six were "unlikely to yield meaningful results" in this population.1
Sometimes taking a standardized test itself can be challenging, for reasons beyond language. Assessments may require a child to follow directions, tolerate a new environment or new people, or pay attention, all of which can be difficult in autism. Researchers have looked at some high-tech solutions to the problem of assessing language abilities and intelligence among minimally verbal people, although these are still in the early stages of use for autism.
Could measurements of brain waves or eye movements give us more information about a minimally verbal person? For example, eye tracking systems could measure how long a child looks at picture on a computer screen, which could indicate the words he understands and those he doesn't. Other possible solutions including measuring electrical activity in a child's brain, from electrodes attached to his head, when looking at a computer screen and listening to words.2
In their 2013 article, Drs. Kasari and Tager-Flusberg called for research into why autism – which affects social skills – has a greater effect on the ability to speak than intellectual disability does, by itself. "For any given level of intellectual disability, the child with ASD is more likely to remain nonverbal," they noted. They also call for research into interventions that target speech and language in these youth. "To date, there is scant evidence for effective language interventions for these children."
In an email, Dr. Tager-Flusberg said the answers as to why some people with autism do not speak will come from different areas of science. "The answers (and there are likely many factors) will come from many different disciplines, and it is important to bring into this area of ASD research people who have the expertise in other areas, such as speech science, auditory science, neuroscience, and genetics."
The Progression of Speech, into Adulthood
I think the sad part was that the school gave up so easily on speech. They thought if the children weren’t speaking by 7, then they were going to be nonverbal.
Tina Harshman has tried many avenues to communicate with her adult daughter, who is considered to be minimally verbal. Virginia was diagnosed around 1990, "back in the dinosaur days of autism," her mother said. At that time, autism was considered to be extremely rare, and schools were less equipped to educate children with it than they are today. Virginia's teachers introduced her to a picture exchange communication system in elementary school in California. But Virginia did not like the unrealistic stick drawings on the picture icons, her mother said. As she got older, her family began using actual photos of objects, along with modified sign language, to communicate with her. Virginia also learned to type some words on a computer, a device that held her interest.
Although her teachers did not expect her to become verbal, her family proceeded on the notion that she would. Her mother would show her a photo of an object, or the object itself, and ask her what it was. Then Tina would "over-enunciate" the word for Virginia.
In the last few years, Virginia has begun saying more words to communicate, increasing her word count to 50, Tina said. For example, she has said, "bathroom," when she wanted to use the restroom. She also has said, "Mom, I want," and then has taken her mother to what she wanted, Tina recalled. What makes this development so interesting is her age. Virginia is 30 and has continued to build upon her functional vocabulary throughout her 20s, decades past the age when most experts expect speech development to continue.
"I think the sad part was that the school gave up so easily on speech," her mother said. "They thought if the children weren’t speaking by 7, then they were going to be nonverbal."
In the Harshman house, like many others, learning is an ongoing process. "I don’t think learning should stop just because school stops at 22 years of age," Tina said. "I'm not going to stop letting her have more words."
Photo credits: 1, 2) iStock; 3, 5) Pixabay; 4)Kennedy Krieger Institute; 6) T. Harshman family photo.
- For information on a student's right to assistive technology under U.S. law, please visit the federal Individuals with Disabilities Education Act site.
- The American Speech-Language Hearing-Association has a Find a Professional tool and information on autism.
- Take our nonscientific poll: Do you/your child with autism use augmentative and alternative communication (AAC)?
- Kasari C, Brady N, Lord C, Tager-Flusberg H. Assessing the minimally verbal school-aged child with autism spectrum disorder. Autism Res. 2013;6(6):479-493.
- Tager-Flusberg H, Kasari C. Minimally verbal school-aged children with autism spectrum disorder: The neglected end of the spectrum. Autism Res. 2013;6(6):468-478.
- National Research Council, Committee on Educational Interventions for Children with Autism. Educating children with autism. National Academy Press; 2001. http://www.nap.edu/openbook.php?isbn=0309072697.
- Munson J, Dawson G, Sterling L, et al. Evidence for latent classes of IQ in young children with autism spectrum disorder. Am J Ment Retard. 2008;113(6):439-452.
- Rapin I, Dunn MA, Allen DA, Stevens MC, Fein D. Subtypes of language disorders in school-age children with autism. Dev Neuropsychol. 2009;34(1):66-84.
- Tager-Flusberg H, Plesa Skwerer D, Joseph RM, et al. Conducting research with minimally verbal participants with autism spectrum disorder. Autism. 2017;21(7):852-861.
- Williams DL, Siegel M, Mazefsky CA, Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC). Problem behaviors in autism spectrum disorder: Association with verbal ability and adapting/coping skills. J Autism Dev Disord. 2017.
- Siegel M, Smith KA, Mazefsky C, et al. The autism inpatient collection: Methods and preliminary sample description. Mol Autism. 2015;6:61-015-0054-8. eCollection 2015.
- American Speech-Language-Hearing Association. About the american speech-language-hearing association (ASHA). https://www.asha.org/about/. Updated 2018. Accessed October 18, 2018.
- National Autism Center. Findings and conclusions: National standards project, phase 2. Randolph, MA: National Autism Center; 2015. Accessed June 15 2016.
- Smith T, Iadarola S. Evidence base update for autism spectrum disorder. J Clin Child Adolesc Psychol. 2015;44(6):897-922.
- Schlosser RW, Wendt O. Effects of augmentative and alternative communication intervention on speech production in children with autism: A systematic review. Am J Speech Lang Pathol. 2008;17(3):212-230.
- Millar DC, Light JC, Schlosser RW. The impact of augmentative and alternative communication intervention on the speech production of individuals with developmental disabilities: A research review. J Speech Lang Hear Res. 2006;49(2):248-264.
- Kasari C, Kaiser A, Goods K, et al. Communication interventions for minimally verbal children with autism: A sequential multiple assignment randomized trial. J Am Acad Child Adolesc Psychiatry. 2014;53(6):635-646.
- U.S. Department of Education. Individuals with disabilities education act, sec. 300.105 assistive technology. https://sites.ed.gov/idea/regs/b/b/300.105. Updated 2017. Accessed October 22, 2018.
- American Speech-Language-Hearing Association. Position statement: Faciliitated communication. https://www.asha.org/policy/PS2018-00352/. Updated 2018. Accessed October 22, 2018.