Failure to communicate: Investigators unite to improve diagnosis and intervention

Failure to communicate: Investigators unite to improve diagnosis and intervention

Part 3 in a series

Imagine if you were given an IQ test in German. How would you do? If you don’t know the language, people might think you were pretty dull.

That’s what happens, says Stephen Camarata, with young children who have problems with language and communication. “Many of our intelligence assessment tools are heavily language-based, which for a child who doesn’t have a language barrier is a reasonable thing,” he said. “But for a child with a language problem, you have to factor that in.”

A misdiagnosis could send that child down a very wrong path, says Camarata, Ph.D., professor of Hearing and Speech Sciences and associate professor of Special Education. “There are a lot of two-year-olds who are labeled mentally retarded who are found, later on, not to be mentally retarded,” he said. “You can imagine how devastating that might be.”

Camarata is deputy director of the Program on Communication and Learning at the Vanderbilt Kennedy Center for Research on Human Development. The program’s aim is to link researchers from every part of campus interested in improving diagnosis and intervention methods for children who have problems with communication and learning.

“The program deals with any type of disorder that affects the ability to communicate, which is a fundamental thing that defines us as humans and defines our access to society,” said Camarata. “Learning can mean anything from the ability to take in stimuli and make inferences about it to learning in a school setting to educational policy. So we cover a lot of ground.”

Adding to the challenge of accurate diagnosis and intervention is the natural continuum of abilities among individuals, whether a developmental disability is present or not, says Camarata. “Think about autism. Autism could include someone unable to communicate at all,” he said. “Or it could be somebody who speaks to you, but only about one topic — only what he’s interested in. Or it could someone like Temple Grandin, a college professor in animal sciences. There’s a broad range of ability and possible expression for autism.”

Camarata’s research takes two directions. The first centers on developing better ways to identify the reasons for delayed speech in young children. “Is it that they have mental retardation, autism, a language disorder? Or is it just normal variation in development? It’s really like a differential diagnosis of a lot of different conditions,” he said. “Right now that’s a fairly subjective process in a very young child.”

To bring more objectivity to the process, Camarata relies on genetic tests for those disorders whose genetic underpinnings are known. For less characterized disorders, he is working with Jonathan Haines, Ph.D. in Molecular Physiology & Biophysics to develop genetic testing that is predictive of the course of language development. A small pilot study is in the works.

In addition, Camarata is collaborating with Paul Yoder, Ph.D. in Special Education on the possibility of using brain scans of electrical activity — so-called Event Related Potentials, or ERPs — to see if it’s predictive of a child’s language development. One ongoing project, for example, evaluates whether entry-level ERPs predict growth in language intelligibility skills and grammar development in children with Down syndrome.

Camarata’s other primary area of research interest is in developing effective treatments for children with delayed speech and language skills. He founded and directs the Child Language Intervention Program, or CLIP — a series of clinics that evaluate applied research protocols. Each year the clinics see 200 to 300 children from Tennessee, and another 100 or so from out of state. CLIP has been designated a National Center for the Study of Language Intervention by the National Institutes of Health.

Camarata advocates rigorous clinical trials to determine effectiveness. “We need to ask scientifically and honestly what parts of our interventions are important and what parts are not,” he said. “It’s also possible that intervention might be detrimental, and we want to know that, too.”

Clinical trials are critical to the pioneering work of Lynn and Douglas Fuchs, professors of Special Education who share the Nicholas Hobbs Chair in Special Education and Human Development at Peabody College. The Fuchses have for years worked as a team to design interventions that improve a teacher’s capacity to address the range of student abilities seen in school classrooms.

The Fuchses recently established a Center on Accelerated Student Learning (CASL) in conjunction with colleagues at the University of Maryland and Columbia University. The primary purpose of the CASL, which is supported by a five-year grant from the U.S. Department of Education, is to study and explore ways of promoting transfer in learning — the ability to shift smoothly from one learning scenario to another.

“Among many kids, including those with disabilities, transfer from one setting to another has proved extremely difficult,” said Lynn Fuchs, Ph.D. “Yet it is critical to perform competently across situations.”

The CASL studies are important, she said, because they involve randomized clinical trials in public school settings across the three institution study sites. Thousands of children, from kindergarten to third grade, are included in the trials. The researchers hope to define the best ways to help children read or perform math problems quickly and accurately while shifting between different types of material.

By adulthood, a reader is subconsciously aware of different kinds of writing — narrative or expository — tipped off by the structure and grammar of the text. For readers who recognize the difference right away, Fuchs says, there is greater understanding. “It’s a mindful approach that allows an effortless transition,” she said.

The same effect can be seen in developing math skills, according to Fuchs. When a child is taught to work a certain kind of math problem — computation of half, for example — and is then given a very different looking word problem, the extraneous information can be confusing. A student must learn to recognize differences and respond appropriately.

“The aim of CASL is to give teachers explicit instructional procedures to teach these skills,” said Lynn Fuchs. “We’re investigating the effectiveness of the procedures in real classrooms with real teachers using stringent measures. It’s a unique effort.”

The Fuchses are also the lead investigators on a Program Project Grant shared by Vanderbilt and the University of Texas in Houston. The goal of the PPG is to distinguish children with math and reading disabilities from those with math disability alone. “There are presumed differences in cognitive ability,” said Douglas Fuchs, Ph.D.

The researchers will study the performance of third-graders in public schools. Part of the evaluation will include studying brain activity of the children before and after math remediation programs, using functional magnetic resonance imaging (fMRI). The Fuchses will work with researchers in the Vanderbilt University Institute of Imaging Science for that part of the study.

Fostering such interdisciplinary collaboration is what Camarata sees as his primary role in the Program for Communication and Learning. “The essence of what I do as deputy director is to help people who might need research support or who are looking for collaborators for their ideas,” he said. “That’s actually the spirit of the Kennedy Center — we can help people develop in ways that they may not be able to do at traditional universities. It’s a great resource.”

Reading clinic offers custom care

by Mary Beth Gardiner

Twelve-year-old Sean Druffel is a man on a mission. Entering the front door of the Vanderbilt Kennedy Center Reading Clinic, he knows right where to go — straight ahead, around the corner. Seeing the familiar face of his tutor, he breaks into a grin.

“Sean loves coming here,” said his father, Thom Druffel. “Usually he doesn’t jump at anything academic — it’s always been a challenge for him. But he and his tutor have gotten along really well.”

Sean has Fragile X syndrome, the most common form of inherited mental retardation. Individuals with the disorder exhibit autistic-type behaviors, speech and language delays, and moderate to severe intellectual impairment.

Not all children enrolled in the Reading Clinic have intellectual disabilities. Most are of normal intelligence, but are experiencing serious difficulties learning to read.

Regardless of the nature of their difficulty, children enrolled in the clinic meet with their tutors once a week in intensive, one-on-one sessions designed to remediate reading problems. The tutors are advanced undergraduate or graduate students in the department of Special Education at Peabody College, who are trained in research-proven instructional methods.

“The program is unique because its focus is on intervention, not assessment,” said Douglas Fuchs, Ph.D., professor of Special Education. “Assessment occurs, but only with the outcome of improvement in mind.”

Douglas Fuchs co-directs the clinic along with his wife, Lynn S. Fuchs, Ph.D., also a professor of Special Education. The two researchers share the Nicholas Hobbs Chair in Special Education and Human Development, and are nationally known for their research in the field of learning disabilities.

“What helps us to provide strong intervention is that progress is data-based and carefully monitored,” said Douglas Fuchs. “The tutors and supervisors — and the children — review performance across time. If a child is not improving as expected, the tutoring is modified until reasonable progress is shown.”

The Reading Clinic resumed this fall after a year’s hiatus. Operation of the clinic is a group effort of Kimberly J. Paulsen, Ph.D., assistant professor of the practice in Special Education, with expertise in teacher training; Donald L. Compton, Ph.D., assistant professor of Special Education, with expertise in teaching reading; and Caresa Young, a doctoral student in Special Education who serves as clinic coordinator. Young came to Vanderbilt from Middle Tennessee State University, where she was involved in the school’s dyslexia clinic.

The revitalized clinic now has dedicated space in the new Vanderbilt Kennedy Family Outreach Center at 1810 Edgehill Avenue. Plans are to expand the clinic into satellite sites, and to add a research dimension to the effort.

Though Sean has only been to three tutoring sessions, Thom Druffel sees encouraging signs in his son. “He seems more focused on the books he’s using here, and he’s reading more words,” he said. “We tried working with him at home, but at some point he just turned off. You realize how important this kind of resource is when you try to coach your own child. We feel really lucky that there was an opening when we called.”

The next clinic session will begin Jan. 26, 2004. Space is limited, and students are accepted on a first come, first serve basis. For more information about the clinic, contact Caresa Young at 936-5123 or Mary Wilson at 343-4782.

Autism researchers intervene early

by Leigh MacMillan

Just a few decades ago, a diagnosis of autism might have been accompanied by a suggestion for institutionalization. There was little hope that children with autism’s core deficits — abnormal social behavior, impaired communication, and restricted and repetitive behaviors — would lead independent lives, hold jobs, even talk.

Times have changed. A wealth of behavioral and educational treatment options has penetrated the barriers of this mysterious disorder. And children who are diagnosed earlier in life and have access to these treatments appear to fare best.

“The brain is more plastic at young ages,” said Wendy L. Stone, Ph.D., professor of Pediatrics and Kennedy Center investigator. “I think there has been enough intervention research to suggest that young children who get intervention early have better outcomes than when the intervention is started later.”

Stone, who directs the Vanderbilt Treatment and Research Institute for Autism Spectrum Disorders (TRIAD), and her collaborators have pioneered the development of a screening tool to detect autism in two-year-olds, and they’re attempting to make it work for even younger children.

The issue now, Stone said, is how to choose appropriate interventions for these young children, whose symptoms vary widely along the autism spectrum. There has been little research to demonstrate which treatments will work best for a given child.

“If a parent comes to me and asks me which therapies she should use, I have no way to answer that question,” said Paul J. Yoder, Ph.D., professor of Special Education and Kennedy Center investigator. “It would be useful to know which treatments might be counterproductive when used together, or which ones might be synergistic.”

Yoder and Stone are collaborating on a study supported by the National Institute on Deafness and Other Communication Disorders to compare the effectiveness of two early communication therapies designed for young children with autism spectrum disorders.

By carefully evaluating communication behavior before, throughout, and following the six-month treatment period, the investigators hope the study will shed light on how the therapies impact communication and which children are most likely to benefit.

“It’s exciting to me that as a nation, we’re finally spending serious money on learning how to treat children with autism, how to educate them, what to do with their day-to-day moments,” Yoder said. “There are no easy solutions to this problem.”

The communication therapy study is seeking children 18-60 months with or suspected of having a diagnosis on the autism spectrum. Interested parents should contact Melanie Jarzynka at 343-2941 or melanie.jarzynka@vanderbilt.edu.

Other TRIAD studies for children with autism spectrum disorders and their younger siblings are also seeking participants. For more information, contact the TRIAD Research Office at 936-0265 or visit www.triadatvanderbilt.com.