Preface
With this, Volume 49 of the International Review of Research in Developmental Disabilities, we celebrate the next generation of researchers and practitioners in the field of developmental disabilities. We note the emergence of this next generation, the struggle that the field has overcome in order that they arrive, and the many ways in which such new workers add vitality, excitement, and new perspectives to already-existing topics.
First and foremost, we herald this next generation by welcoming this series' new coeditor, Dr. Deborah Fidler of Colorado State University. Bob's student from many years ago and an emerging leader in the field, Debbie also serves as the editor of the American Journal on Intellectual and Developmental Disabilities (AJIDD), the intellectual disability field's foremost research journal. Long a proponent of etiology-informed approaches to intellectual disabilities—several chapters of which appear in this volume—Debbie has rapidly established herself as a leader in examining early development of children with Down syndrome and other neurogenetic disorders. In addition to her own research accomplishments, Debbie has helped recruit for this volume several interesting contributions. For my (Bob's) part as the IRRDD series editor (now coeditor), I am already blessed by Debbie's thoughtfulness, excitement, and wisdom.
The next generation of researchers is also evident by their contributions to virtually every piece in this volume. Although we highlight these new researchers below, we here reflect on the field itself. Until recently, many expressed concerns about the next generation of workers in developmental disabilities. Surveys showed that the field was graying, with established researchers increasingly likely to be in their 50s or older, inadequate numbers of programs training new researchers, and (at least in the United States) inadequate federal support for such training programs. The landmark article “Who will lead the field beyond 2020?” (
Havercamp, Taase, Lunsky, & Garcin, 2003) highlighted this state of affairs, focusing mostly on the age distribution of members of the American Psychological Association's Division 33 (intellectual and developmental disabilities).
Although concerns continue, some progress has been made over the last decade. We briefly list some examples of positive developments from 2003 on:
• Professional development activities at conferences, especially expansions of training activities associated with the Gatlinburg Conference on Research and Theory in Intellectual Disability (a long-term research conference). These include expansion of student travel awards and of seminars by established researchers discussing such career issues as attaining a job at a college or university, getting a grant, and submitting manuscripts to journals; a series of daylong preconferences highlighting cross-disciplinary research in intellectual disabilities; and continued contact at the Gatlinburg conference with program officers of the National Institute of Child Health and Human Development (NICHD), especially its Intellectual Disabilities Branch, who faithfully attend and formally and informally interact with attendees;
• Granting agencies, including changes at NICHD that give special considerations to grant applications from new investigators. There have also been increases in the numbers of private foundations that support research in developmental disabilities, including the Organization for Autism Research, the National Down Syndrome Society, Autism Speaks, as well as various foundations in Prader–Willi syndrome, Williams syndrome, Angelman syndrome, and others;
• Workshops and training opportunities on such methodological topics as Randomized Control Trials, Single-Subject Designs, and Quasi-Experimental Designs; on statistical techniques such as Hierarchical Linear Modeling; and on using such large-scale, nationally representative databases as the National Longitudinal Transition Survey-II. Most of these federally supported workshops, which generally last from 1 to 2 weeks during the summer, have been free to disability researchers of various social science disciplines;
• Conferences considering training, especially an NICHD-sponsored conference highlighting the need for more federal involvement in training grants;
• Support groups and leadership positions, especially including APA Division 33's “Young Professionals” group and governing board positions for students and younger workers;
• Within-field training support changes; for example, in the field of Special Education, where each decade an assessment of work-force needs has led to an increase in the funding of training grants by the Department of Education.
The fruits of such changes can be seen in the inclusion of young workers in virtually all of this volume's contributions. In the first chapter, Sasha Zeedyk and her advisor Jan Blacher discuss the relationship between maternal depression and child behavior problems. These issues have long been a topic in the intellectual disabilities field, in that mothers are known to have high rates of depression, children have high rates of behavior problems, and some connection exists between the two. Zeedyk and Blacher, however, expand our understanding of this complex issue in two ways. First, they compare connections of maternal depression and child behavior problems in samples of children with and without intellectual disabilities (and over age), suggesting interesting connections that may differ some across the two groups. Second, they go beyond cross-sectional studies to compare findings from cross-sectional and longitudinal analyses, thus allowing for more in-depth, nuanced understandings of connections between the two.
In the second chapter, Judy Reaven and (newcomer) Allison Wainer examine psychiatric disorders among children with autism spectrum disorders. As the field is increasingly appreciating, children with ASD often show a host of co-occurring psychiatric disorders, and such conditions remain underexamined. In this regard, Reaven and Wainer provide an excellent review of what we know about commonly co-occurring conditions such as anxiety disorders, mood disorders, and attention deficit hyperactivity disorders. They discuss issues of diagnosis, assessment, and treatment of these conditions, focusing on emotion regulation as an underlying problem and focusing as well on the need to move the field from university-based settings into the community. Their approach takes a common, real-world problem and provides both a state-of-the-art review and interesting implications for future research and intervention.
In the third, Benjamin Yerys, a researcher in IDD neuropsychology with a growing body of work, examines theories underlying the repetitive behaviors of young children with autism spectrum disorders. These behaviors, long characteristic of ASD, continue to be the focus of too few neuropsychological studies, and Yerys presents evidence for and against ties to several brain regions. In moving forward from this cogent review of current imaging work, Yerys also presents the reader with two alternative models on repetitive behavior that build on relevant neurobiological models of obsessive–compulsive disorder and attention regulation.
In the fourth, series coeditor Robert Hodapp and his colleague Richard Urbano, along with Bob's graduate students Andrea Perkins and Crystal Finley, examine family care for aging adults with intellectual disabilities and with Down syndrome. They focus on the ways in which aging in Down syndrome, maybe even more than for adults with (non-DS) intellectual disabilities, may relate to aging-related changes in the adults themselves, their parents, and their siblings. Using open-ended questions from siblings of adults with and without Down syndrome over the age span from 20 through 59 years, Hodapp, Perkins, Finley, and Urbano survey the perspectives of these adult siblings, the most likely candidates to assume caregiving when parents can no longer do so.
In the fifth, two young researchers, Angela John Thurman and Marisa Fisher, highlight the behavioral phenotype of individuals with Williams syndrome from both theoretical and practical perspectives. For too many years, researchers have examined Williams syndrome—and, really, many different genetic conditions of intellectual disabilities—using laboratory-based measured of cognition, language, social, or other behaviors. At the same time, clinicians and parents have been concerned about issues such as overfriendliness, social vulnerability, anxiety, and friendships. Thurman and Fisher combine these two perspectives, working hard to show the ways in which laboratory-based findings tie with more real-world concerns, leading to important clinical and practical implications.
Such ties of theoretical to practical concerns can again be seen in the volume's final chapter, by (newcomer) Elizabeth Will and Susan Hepburn. In this case, the ties involve children with specific genetic disorders and applied behavior analysis (ABA). To date, these two areas have remained separated, as those interested in behavioral phenotypes of children with Down syndrome, Williams syndrome, Prader–Willi syndrome, or any of hundreds of other genetic conditions have done their work apart from those examining reinforcer hierarchies, the functional reasons underlying a child's particular maladaptive behavior, and other aspects of ABA. Will and Hepburn join these two approaches, illustrating for several genetic conditions the ways...
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