Reflecting on the past, looking to the future.

03Original abstract

My term as editor of AJIDD comes to a close with the current issue. I have had the privilege of serving as editor since 2008. I would like to take this opportunity to make some personal observations about the journal and our field. I also wish to share some personal thoughts and offer thanks to the people who have made my tenure such a rewarding experience.I believe that the articles published in AJIDD over the past seven years have been of uniformly high quality, meeting the journal's long-standing commitment to methodological rigor, hypothesis-driven studies, and research that has implications for improving the lives of people with intellectual and developmental disabilities (IDD) and their families. The articles published in AJIDD have continued to reflect the interdisciplinary nature of research on IDD, but increasingly that research has integrated behavioral and social science approaches with more basic science and biomedical approaches. The articles published have increasingly focused on particular etiological conditions, such as Down syndrome and fragile X syndrome; however, behaviorally defined groups (e.g., those with mild intellectual challenges or those who have acquired no spoken language) continue to hold interest for the field as does the category of ID more generally. Submissions to AJIDD from researchers outside of the United States have become more frequent, although most international authors are from Great Britain, Australia, or Western Europe. Not surprisingly, articles on autism have become more common in the journal, with some focused on autism per se and others on questions about the disorder as a comorbid condition with ID or particular etiological conditions (e.g., fragile X syndrome). Collectively, the articles published in AJIDD continue to represent the dynamic nature of research on IDD.The number of new submissions to the journal has increased each year, with well over 125 new submissions projected for 2014. This increase is perhaps a bit surprising given the increasing number of periodicals that include IDD as a focus, which suggests that AJIDD continues to be seen as one of the most prestigious journals in the field. At the same time, the acceptance rate has remained quite constant at near 30%, which is evidence of the high scientific standards of the associate editors and reviewers who commit their time, expertise, and passion to the journal. Moreover, of the more than 700 new articles submitted to the journal during my tenure, only one was accepted without revision. Of course, this latter statistic, I believe, highlights the fact that peer reviewers not only serve as the gatekeepers of publication, but also as collaborators of sorts who are dedicated to improving and optimizing each article that is shared with the scientific community.Although I am proud of the quality of the articles submitted to, and published by, AJIDD, I must acknowledge areas of concern. The vast majority of empirical studies we have published during my tenure could be classified as quantitative in nature, using statistical approaches to characterize and make decisions about numerically represented data collected from or about participants. Qualitative studies, which attempt to discern and describe through text emergent patterns from less structured observations of participants or from their own recounting of their lives and experiences, have often been submitted to the journal; however, such studies have typically not fared well in the review process. In large part, this reflects the inherent difficulty of distilling the complex data generated in a qualitative study into the short form required by AJIDD and most other journals (Fujira, 2014). At the same time, however, I believe that many researchers often adopt a qualitative approach for questions that are "ready" for a more hypothesis-driven approach, leaving reviewers with the impression that the studies do not move our understanding of the phenomena forward. Nevertheless, I continue to firmly believe in the power and value of qualitative approaches; however, they are often misused and poorly understood.Quantitative studies represent the vast majority of the papers submitted to and published in AJIDD. Perhaps the most common type of quantitative study published in AJIDD is that involving a group comparison design, which involves comparing the performance on one or more dependent measure of two or more groups (e.g., children with Down syndrome to those with fragile X syndrome or adults living in different types of residential settings). Although this type of study has great value, it has its limitations and can be executed more or less adequately. The logic of this design often requires that the groups be matched on some measure (e.g., IQ). Despite its popularity, such matching is often inadequate from a statistical standpoint and superior methods developed in other disciplines have yet to be fully adopted by researchers in IDD (see Kover & Atwood, 2013, for a review). Perhaps more concerning is the frequent failure to recognize the interpretive limitations of even an adequately conducted matched-groups design. More often than not, such studies are useful for describing profiles of differences between the matched groups; seldom, however, are such studies conclusive or even suggestive about the causes of the differences observed.Moving beyond the pages of AJIDD, there are areas of great challenge and opportunity for the field of IDD research. Considerable attention and excitement has been focused in the past decade on pharmaceutical treatments that target core symptoms associated with fragile X syndrome, Down syndrome, and other genetic conditions that produce IDD. These treatments often produce dramatic results in animal studies, but only rather modest results in human trials. There are many reasons for this state of affairs. One reason is that currently available measures of cognition, behavior, and adjustment, as well as accompanying biomarkers, are simply not adequate for detecting subtle, but clinically important, changes in short-term clinical trials (Berry-Kravis et al., 2013). Developing such measures will require the expertise of researchers working in the disciplines that are well represented in AJIDD, and it is my hope that research on outcome measures will increasingly find a home in AJIDD.A second problem contributing to the limited success of clinical trials of pharmaceuticals is perhaps more vexing. Even an efficacious drug that targets, cognition, for example, only makes the individual better prepared to learn going forward. The drug does not make up for years of missed learning and non-normative learning experiences; nor does the drug optimize the current learning environment. Thus, even an efficacious drug may not produce observable improvement unless paired with a well-organized and supportive behavioral or educational intervention. Unfortunately, there is a dearth of such evidence-based interventions, particularly, for older children, adolescents, and adults with IDD. Again, then, this is an opportunity and challenge for the field, and such research should have a home in AJIDD.A different area of challenge and opportunity, I believe, is associated with the increased interest in the comorbidity of autism spectrum disorders (ASD) with IDD conditions such as Williams syndrome, Down syndrome, and fragile X syndrome. As a field, we have been content largely to document the rate of co-occurrence of ASD with particular IDD conditions. Less often have we focused on whether the ASD associated with fragile X syndrome, for example, reflects the same underlying psychological and neurobiological pathology as in the idiopathic case. This is an important question, however, because the answer has important implications for treatment. In fact, there is increasing evidence that ASD may reflect different problems in fragile X syndrome and other IDD conditions relative to idiopathic cases (McDuffie et al., in press; Thurman et al., 2014). Thus, I would hope that researchers who address this comorbidity and publish their research in AJIDD will take a deeper look at the "meaning" of the comorbidity. More generally, perhaps as a field it is worth asking whether a dimensional approach rather than the typical categorical approach to studying ASD in relation to IDD would be more appropriate.I want to thank the wonderful associate editors who have given their time and energy to AJIDD and to me over the past seven years. I have marveled at their expertise, dedication, and commitment to our science and to people with IDD and their families. It has been a privilege to work with and learn from them. They have shaped the journal and the field for the better. I also would like to thank the leadership and membership of AAIDD for entrusting this storied journal to me. Being editor has been one of the highlights of my career.Finally, I would like to congratulate Debbie Fidler on being named the new editor of AJIDD. I have known Dr. Fidler for many years and have always been impressed with her innovative and thoughtful scholarship and commitment to translational research. I can think of no one better suited to lead AJIDD and take it in directions that will advance our field, and most importantly, improve the lives of people with IDD and their families.

American journal on intellectual and developmental disabilities, 2014 · doi:10.1352/1944-7558-119.6.493