It is estimated that as many as 25 percent of individuals living with autism spectrum disorders are non-verbal. That is, they cannot functionally communicate with others using their voice. Despite that substantial fraction, we still know very little about these individuals, their abilities, and their needs. To address this problem, Autism Speaks' High Risk High Impact (HRHI) Initiative convened three meetings focused on non-verbal individuals with autism, most recently in Boston in late August. Drawing extensively from the experience of researchers who have studied other populations of individuals that are non-verbal, this series of meetings, and the two funded projects that have emerged from them, will potentially provide new insights into the capabilities and needs of individuals who are unable to communicate through speech. "We still know very little about the cognitive capabilities of nonverbal people with autism, and how best to help them learn to communicate," said Geri Dawson, Ph.D., Autism Speaks chief science officer. "This is an important research area that could greatly impact the quality of life of many individuals with autism." Our hope is to bring new treatment methods to non-verbal individuals and their families. The participating researchers recognized the large unmet need in non-verbal autism and responded enthusiastically in their plans to meet the challenges.
Perhaps somewhat ironically, one of the first challenges in studying non-verbal autism is in defining what exactly is meant by "non-verbal." For instance, some individuals have spoken words, but do not use them functionally, while others may have little spoken language but are able to use it to communicate their needs. The first day of the meeting was focused on developing a description that would be useful for studies with these individuals. The group discussion, led by Charles Nelson, Ph.D. (Harvard and Children's Hospital Boston), centered on the need to create a definition that includes individuals without functional speech, including as "non-verbal," for example, those who use speech to imitate what they hear (echolalia) but do not use it to spontaneously communicate their own thoughts or ideas. Portia Iversen (HRHI committee member who spearheaded this effort) began the meeting by showing the assembled group of scientists video presentations of several non-verbal individuals who have learned to type to communicate their thoughts.
Dr. Dawson presented data from her extensive research on interventions designed to promote language development, noting especially the challenges and strategies for obtaining useful measurements of cognitive functioning when an individual is non-verbal. John Constantino, M.D. (Washington University) discussed exciting data on the use of a survey tool he developed to characterize the social abilities of non-verbal individuals. Dr. Constantino has observed correlations between an individual's capacity for reciprocal social behavior and IQ, and is investigating this link in larger populations, including the IAN online community (www.ianproject.org). Connie Kasari, Ph.D. (UCLA) spoke about her unique treatment project funded through a HRHI grant from Autism Speaks (view abstract), which is allowing her to lead a randomized controlled trial of interventions targeted at permitting young non-verbal individuals to speak or communicate via an augmentative communication device. Although extremely preliminary, the pilot data she presented were impressive – all three children showed significant improvements in their abilities to communicate in the six week intervention.
Typically, individuals who show little or no ability to express themselves verbally perform poorly on traditional tests of cognitive ability. Meeting attendees offered their expertise to identify ways of ascertaining whether, and how much, the ability to receive and comprehend language is intact even if the ability to produce language is minimal. April Benasich, Ph.D. (Rutgers) led the second day of the meeting with pilot data from her HRHI funded project (view abstract), which is using electrophysiology to measure brain activity and determine whether non-verbal children with autism are processing information presented to them even if they are not responding. Two other researchers using electrophysiology to assess cognition also presented results at the meeting. Nicole Gage, Ph.D. (UC Irvine) is studying how speech sounds are processed differently from non-speech sounds. Typical children have a "processing bias" for speech sounds, but that is not the case for non-verbal children with autism. Using a technique known as MEG, she is now focusing on the earliest levels of auditory information processing in the brain (located in the brainstem) to better understand how we should be targeting language therapies. John Connolly, Ph.D. (McMaster University) brings his expertise from a different field – assessing the cognitive abilities of "locked-in" patients, for instance individuals who have suffered a car accident or a stroke and cannot respond for themselves. Using EEG and carefully adapted cognitive tests, Dr. Connolly has been able to elucidate very high-level cognitive abilities in people who can't even move a muscle.
Because these individuals are non-verbal, they often have other skill sets that go unnoticed but which are important to understand. Therefore, another group of researchers at the meeting presented on the unique motor and sensory abilities frequently observed in non-verbal individuals and outlined tests that do not rely on language output to be able to study them. Shafali Jeste, M.D., Ph.D. (Harvard) is making use of specialized eye movement tasks to characterize the function of the basal ganglia, a part of the brain important for motor movements, in non-verbal individuals with autism. Stewart Mostofsky, M.D. (Kennedy Krieger Institute) reported on differences in motor abilities in children with autism. When planning their next movements, rather than using feedback from external visual cues, they have an apparent bias for using as a guide internal feedback about their own body's movement and position. Drawing from his extensive studies in adult patients that have recently recovered their sight after a cataract surgery, Pawan Sinha, Ph.D. (MIT) showed how an object recognition task he developed for these patients can now be used to ask well-controlled questions about what non-verbal individuals with autism perceive and understand.
Finally, beyond clinical studies, a second way to study non-verbal communication and cognitive processes is to focus on another type of non-verbal individuals – animals. Therefore, researchers studying animal models were specifically invited to the meeting to present what they have learned about higher-order cognitive processes in their model systems. For instance, Helen Barbas, Ph.D. (Boston University) compared neuroantomical findings from individuals with autism to non-human primates that had experimental lesions in areas that integrate information about emotion and related sensations. Christopher Coe, Ph.D. (University of Madison, Wisc.) reported on behavioral differences that result from prenatal stress and immune challenges in rhesus macaque monkeys, some of which has also been demonstrated in large population studies in humans. Stephen Suomi, Ph.D. (NIH), also working in macaque monkeys, presented elegant behavioral data on early social communication that occurs in this species. Work from the investigators at the meeting suggested the rhesus macaque as an intriguing, if underutilized, model for autism research, especially where complex communication behavior is concerned.
Taken together, the presentations at this meeting created an incredible amount of excitement for investigating non-verbal autism, one of several areas of need identified by the HRHI steering committee. Non-verbal individuals are nearly always presumed to have low intellectual capabilities, yet some of these individuals have developed the ability to communicate through alternative means. What if many more individuals are cognitively intact but simply unable to access the ability to communicate? If true, this startling possibility would have profound implications for the treatment and education of non-verbal individuals. The HRHI projects on non-verbal autism all share the goal of being able to deliver scientific answers to such questions.
Read more about the High Risk High Impact initiative here.