NIDCD-Funded Autism Center of Excellence is the First to Study Minimally Verbal Children
By Robin Latham
November 2014 update: Read a 2014 article on this NIDCD-funded research on the Boston University website.
Helen Tager-Flusberg, Ph.D.
Photo credit: Martin Flusberg
The past decade has been a time of great advances in research exploring the causes, diagnosis, and treatment of autism spectrum disorder (ASD), a complex developmental disorder that affects behavior, communication, social interaction, and learning. There have also been big improvements in identifying children with ASD, which the Centers for Disease Control and Prevention (CDC) now estimate as affecting 1 in every 88 children in the United States. Better and earlier interventions are helping many children with ASD communicate and interact more successfully with their peers and the rest of the world.
Even with these strides, however, there still remain a number of children with ASD—a group that some experts estimate could be as high as 30 percent—who may never develop functional language skills or learn to speak, in spite of having access to early intervention and intensive therapies. As they grow, these children develop few ways to communicate verbally with others and are cut off from one of the most basic of human needs—self-expression and connection with other people.
To find out more about this little-studied subgroup of children with ASD, the NIDCD recently awarded a grant to Boston University to look more closely at the children’s underlying skills and impairments and how the use of creative and carefully targeted interventions could potentially help them develop basic communication skills. The $10 million grant, awarded over five years, is one of nine Autism Centers of Excellence (ACE) grants awarded by the National Institutes of Health (NIH) in 2012. These grants support research at individual centers or within research networks dedicated to the study of ASD.
The NIDCD grant will allow researchers led by Helen Tager-Flusberg, Ph.D., professor of psychology, to direct an ACE based at Boston University that pulls together other NIDCD-funded researchers from the university, as well as collaborators from Harvard Medical School and Northeastern University, also in Boston, and Albert Einstein College of Medicine, in New York. These scientists have expertise in research related to speech, auditory processing, and imaging techniques. The ACE funding gives them the opportunity to collaborate and apply what they know about the acquisition and production of language to better understand these challenged children.
“The sad truth is that despite the enormous growth in autism research, these minimally verbal children have been neglected in terms of our research population, primarily because they are so difficult to recruit and study,” says Dr. Tager-Flusberg. “You can imagine if you’ve gone through 8 to 10 years of life not being able to communicate with other people that it might contribute to challenging behaviors.“
The other challenge for studying minimally verbal children with ASD is one of assessment. How can you use a standard IQ test with children who don’t speak and have limited language skills? A previous supplemental grant from the NIDCD allowed Dr. Tager-Flusberg and her colleagues at Boston University to develop a purely visual test to measure nonverbal skills based on Raven’s Coloured Progressive Matrices, a commonly used test for young children. Administering these and other newly developed nonverbal tests isn’t easy, though.
“For what might be a two-part testing session for some autistic children,” says Dr. Tager-Flusberg, “we have to bring these children in for four to five sessions at least, just to get the same thing accomplished.”
Dr. Tager-Flusberg believes that there are currently teenagers and young adults with ASD who potentially could have been helped to become verbal when they were younger with the right interventions at the right time. “It just requires so much more than they were getting,” Dr. Tager-Flusberg says, “and so it didn’t happen for them.”
This center will be asking some big questions about what makes these children different from other children with ASD. Dr. Tager-Flusberg doesn’t think there is going to be one simple answer, and so the research group will be taking several different approaches to these problems, by using brain imaging techniques to look at auditory processing and the systems and connections involved in initiating and producing speech. They will also be testing a novel intervention that has appeared promising in preliminary studies, and which, if successful, will tell the researchers quite a bit about why these children previously failed to acquire spoken language skills.
“If we don’t address the fundamental research questions about the nature of the problems for these children,” says Dr. Tager-Flusberg, “we’ll never be able to figure out interventions that could help them acquire spoken language.”
More information about NIDCD supported autism research is here.
The NIH created the ACE program in 2007 to launch an intense and coordinated research program to explore the causes of ASD and find new treatments. In addition to the NIDCD, the NIH institutes that support the ACE program are the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Environmental Health Sciences, the National Institute of Mental Health, and the National Institute of Neurological Disorders and Stroke. This research is supported by NIDCD grant P50DC013027.