As many as 25% of individuals living with autism spectrum disorders are non-verbal. Without the ability to communicate, it is exceptionally hard to understand the personal needs of non-verbal individuals, and the lack of appropriate assessment tools creates a dearth of information especially when it comes to addressing important medical and education requirements. What if there existed a set of tests that could directly assess whether or not someone understood your last sentence, even in the absence of obvious behavior?
A new grant [view abstract here] has now been awarded to John Connolly, Ph.D., of McMaster University, to help overcome this challenge. Dr. Connolly has been researching exactly these sorts of tests for the past 15 years. However, his patient population has not been individuals with autism. Dr. Connolly has studied individuals with acquired brain injury, who are non-communicative after an accident or stroke. One case that he likes to describe is that of a young man who was severely injured in a brutal stabbing and arrived at the hospital conscious but showing no signs of awareness for several days. Using scalp electrodes to record event-related potentials (ERPs), Dr. Connolly measured the young man's responses to spoken text that
was adapted from a traditional test of linguistic understanding. The ERPs revealed that the young man comprehended language at college-level complexity. Few would have guessed that conscious thought was occurring in the body of someone who appeared so unaware. The results from Dr. Connolly's tests resulted in the man receiving rehabilitation therapy instead of palliative care. That young man eventually walked out of the hospital to lead an independent life.
Dr. Connolly has been an active participant in Autism Speaks' High Risk, High Impact initiative meetings aiming to characterize the cognition in non-verbal individuals with autism (CCNIA; August meeting recap here). The CCNIA group has been tasked with understanding the range of abilities of non-verbal individuals with autism, which is likely to be as varied in this population as it is in autism generally. On one hand, there are individuals who, although unable to speak, can communicate through typing or pointing. On the other hand, there are non-verbal individuals who show no signs of understanding language and may in fact be quite intellectually impaired. However, traditional cognitive tests are notoriously difficult to deliver and interpret with non-verbal individuals. Dr. Connolly's testing methods provide a real-time record of sensory, perceptual, and cognitive processing that is independent of overt behavior. These tests may one day offer a substitute for behavioral tasks and allow for neuropsychological assessment and monitoring in non-verbal individuals with autism.
In working with non-verbal subjects with autism, Dr. Connolly plans to take advantage of event-related brain potentials that are commonly seen in typical subjects when there is a "mismatch," or error, in either a stream of speech or between the picture of an object and the spoken description of the same. By varying the complexity of the tests, Dr. Connolly can assess whether a subject understands a sentence and can detect errors, sometimes even as subtle as errors of syntax. Importantly, this set of tools can provide a fine-grained assessment of an individual ‘s language understanding without requiring that they respond to any commands.
Dr. Connolly noted that when he gave talks about his research using ERPs to assess cognition in patients with acquired brain injury, he was frequently asked if he had ever used these tools in individuals with autism who are non-verbal. "I think this is a great opportunity to use our research methods to determine what level of cognitive activity may exist in non-verbal people with autism," says Connolly. "Of course, everything depends on what we find, but the implications for therapeutic intervention with this group are considerable." Indeed, identifying markers that correlate with language understanding would be of tremendous use in tailoring educational opportunities, including perhaps learning to type.
The project is a one year proof of principle study to establish whether these tools work well in non-verbal individuals with autism. The design of the study includes those who are non-verbal in terms of speech, but are able to communicate by typing. Non-verbal individuals who type create an interesting study group, serving somewhat as their own controls in the sense that typed responses can be compared with ERPs from the same individual. Also, although several typing non-verbal individuals with autism have captured media attention (click names for more info: Carly Fleischmann | Sue Rubin), this will be the first time that they are explicitly included as part of a scientific study. As such, this study is an opportunity to validate that typing skills can be learned and open the door to future studies on best methods for teaching typing to non-verbal individuals. The two other groups under study are non-verbal individuals who have not demonstrated typing and age-matched control subjects.
Because he is new to autism, Dr. Connolly is rapidly forging many collaborations to assist his entry into the field. Through the process of working with Autism Speaks, Dr. Connolly was able to meet his university neighbors with expertise in autism who will now help him recruit his subject population and ensure their comfort during the studies. Peter Szatmari, M.D., and Jo-Ann Reitzel, Ph.D., have become enthusiastic collaborators and will help ensure that the unique challenges faced by individuals with autism are taken into account for the study design. Should these efforts be successful, Dr. Connolly looks forward to expanding his study to include more subjects in different parts of North America. Dr. Connolly has been looking for a way say "Yes!" to his colleagues who ask about using his tools with non-verbal autism. With Autism Speaks' High Risk, High Impact initiative, Connolly now has the chance, saying "I am truly pleased with the opportunity to do this research." We are too, and look forward to reporting on the results.