National Institute on Deafness and Other Communication Disorders
National Institute of Mental Health
Eunice Kennedy Shriver National Institute of Child Health and Human Development
In April 2010, the National Institutes of Health (NIH) convened a multidisciplinary workshop to discuss the state of the empirical knowledge about, and research opportunities regarding, the substantial subgroup of children with autism spectrum disorders (ASD) who have not developed functional verbal language by five years of age. The discussants reviewed the current state of scientific knowledge, highlighted critical gaps in our knowledge, and identified research opportunities to address knowledge gaps. A series of presentations and group discussions addressed the three major topics of the workshop.
Topic 1: Who are these children? What do we know about their developmental trajectories?
This is a highly variable population, with no single set of defining characteristics or patterns of strengths and weaknesses. As a result, it is a very significant challenge to assess these individuals with traditional standardized instruments. Our current measurement tools have relatively low reliability and validity for this population. The presence of even one word, or some echolalic speech, appears to be a significant predictor for the acquisition of spoken language after five years of age. In both research and treatment planning, it is important to distinguish whether children are nonverbal (i.e., no spoken language), preverbal (i.e., younger children who have not yet developed verbal language), or non-communicative (i.e., having neither verbal nor nonverbal communication skills).
Topic 2: How can we assess their skills and knowledge across different domains, with special reference to those abilities relevant to language acquisition (e.g., verbal comprehension, sensory and motor skills, apraxia)?
Standard assessment approaches have significant limitations in this population. Implicit measures of behavior (e.g., eye-tracking) or brain activity (e.g., magnetoencephalogram [MEG] or electroencephalogram/evoked response potentials [EEG/ERP]) may be useful in revealing children’s knowledge of language, and for uncovering differences in speech/sound processing. Sensitive assessments may be critical in guiding treatment planning and the development and testing of novel interventions. Work on these methods is just beginning, and there is a need for research demonstrating the validity and reliability of these approaches.
Topic 3: What treatments/interventions are effective in improving spoken language and communication in these children (augmentative and non-augmentative methods)?
A series of presentations focused on interventions that directly teach spoken communication skills, and alternative augmentative communication (AAC) interventions that utilize non-speech means for expressive and/or receptive communication. Most of the research on interventions to teach spoken language has been conducted in younger (i.e., preschool) children. Toddler/early intervention studies have demonstrated the benefit of interventions that target joint attention or social engagement and symbolic play. While there is evidence of the utility of behavioral interventions, response to treatment is quite variable. Predictors of positive response to treatment include higher levels of engagement with objects, the presence of some verbal behavior, and less socially avoidant behavior. There is a need to better understand how to individualize treatment approaches, with a focus on school-aged nonverbal children.
Research has shown that children with ASD can learn to use AAC (e.g., pictures, signs, speech-generating devices), although many studies are limited in their descriptions of study participants. Current research does not support a common fear that using AAC methods will hinder the development of spoken language. There is a need to expand the empirical evidence on the utility of AAC to include better-characterized participants, a broader range of language functions targeted by the interventions, facilitating use of these methods in the home and community, and long term outcomes.
Research Gaps and Opportunities
The working group identified a number of research gaps and opportunities. For example, we need novel methods for assessing cognition and language comprehension in non-speaking children with ASD, using a range of neural and behavioral approaches. We also need studies designed to elucidate the underlying mechanisms that explain why some children do not acquire spoken language by school-age, in spite of exposure to evidence-based interventions. Potential areas of investigation include oral-motor skills, auditory/speech processing, social attention mechanisms, and fundamental impairments in intentional communication. Comprehensive treatment studies focusing on non-speaking school-aged children with ASD should address active ingredients of the intervention and moderators of treatment response.
For more information, please contact Judith Cooper, Ph.D., Deputy Director of the NIDCD and Director of the Division of Scientific Programs at the NIDCD, at 301-496-5061.