Research In Developmental Disabilities Research Articles

Participant and intervention characteristics influence the effectiveness of the Picture Exchange Communication System (PECS) for children with ASD1

This review provides a summary and appraisal commentary on the treatment review by Ganz, J., Davis, J., Lund, E., Goodwyn, F., & Simpson, R. (2012). Meta-analysis of PECS with individuals with ASD: Investigation of targeted versus nontargeted outcomes, participant characteristics, and implementation phase. Research in Developmental Disabilities, 33, 406–418. Source of funding and disclosure of interest: No source of funding indicated and no conflicts of interests were reported.

A life dedicated to Alzheimer’s disease research: in memory of Inge Grundke-Iqbal (1937–2012)

Alzheimer’s disease (AD) was first reported 106 years ago, but until the 1980s, little was known about the underlying disease mechanisms. Modern AD research had been driven mainly by two milestone discoveries made in the 1980s: (1) identification of amyloid b peptide as the major component of amyloid plaques and its precursor protein, and (2) identification of hyperphosphorylated microtubule-associated protein tau as the building block of paired helical filaments (PHFs)/neurofibrillary tangles (NFTs). On 22 September 2012, the AD field lost a pre-eminent figure— Inge Grundke-Iqbal—who discovered hyperphosphorylated tau in Alzheimer PHFs/NFTs. Inge Grundke-Iqbal was born in Osnabrueck, Germany, on 20 July 1937. After receiving a PhD degree in biology and biochemistry at Georg August University, Goettingen, Germany, in 1967, she started her research career as a postdoctoral fellow at the Max-Planck Institut fur Immunobiologie, Freiburg i. Br., Germany. In 1969, she moved to the USA and received further postdoctoral training at the University of Michigan, Ann Arbor, MI (1969–1970); the New York University Medical Center, New York, NY (1970–1972); and the Albert Einstein College of Medicine, Bronx, NY (1972–1974). In 1974, she was promoted to Assistant Professor in the Department of Pathology of the Albert Einstein College of Medicine, initiating her research focus on neuropathology and AD. In 1977, she moved to the New York State Institute for Basic Research in Developmental Disabilities (IBR), located in beautiful Staten Island, a borough of New York City. The institute, then under the direction of the late Henryk M. Wisniewski (also a pioneer of AD research), was an incubator of AD research and attracted many researchers in the field. It was here that she directed the Neuroimmunology Laboratory and, from 1997 to 1998, chaired the Department of Neurochemistry. She spent most of her time in her laboratory during her last 35 years, right up until the week before her death. Inge Grundke-Iqbal embarked upon her career in AD research in 1974 in the Department of Pathology at the Albert Einstein College of Medicine together with her husband, Khalid Iqbal, who also is a world-renowned AD researcher. The department was directed by Robert D. Terry and was the most active AD research group in the world at that time. The biggest question in the AD field at C.-X. Gong (&) Deparment of Neurochemistry, New York State Institute for Basic Research in Developmental Disabilities, 1050 Forest Hill Road, Staten Island, New York 10314, USA e-mail: chengxin.gong@csi.cuny.edu

“There is No Black or White”: Scientific Community Views on Ethics in Intellectual and Developmental Disability Research

AbstractFrom an ethical standpoint, there are questions about the best ways to include adults with intellectual and developmental disabilities in research. Scholarship reflects divergent responses to these enduring questions and values that can be at odds with one another. To deepen our understanding of beliefs in the scientific community about how to conduct ethically strong research with adults with intellectual and developmental disabilities, we examined the views of researchers who conduct this research and ethics review board members on ethical principles and practices. We conducted four focus groups with 17 researchers and ethics review board members. We asked participants to discuss how to ethically conduct research, relevant factors to consider, appropriate ways to address ethical concerns, and the role of ethical and civil rights principles. Findings indicate support for the use of ethical principles and newer models of disability to promote inclusion in research, a focus on researchers' interpersonal skills and relationships to participants, questions about the best approaches to recruitment, consent, and compensation, and strategies to promote participation in research. These findings reflect the socio‐ecological model of disability, civil rights‐based interpretations of ethical principles, the provision of accommodations as an ethical imperative, the potential benefits of promoting relationships between researchers and persons with intellectual and developmental disabilities, and the need for dialogue between researchers and ethics review board members.

The Study to Explore Early Development (SEED): A Multisite Epidemiologic Study of Autism by the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network

The Study to Explore Early Development (SEED), a multisite investigation addressing knowledge gaps in autism phenotype and etiology, aims to: (1) characterize the autism behavioral phenotype and associated developmental, medical, and behavioral conditions and (2) investigate genetic and environmental risks with emphasis on immunologic, hormonal, gastrointestinal, and sociodemographic characteristics. SEED uses a case-control design with population-based ascertainment of children aged 2-5years with an autism spectrum disorder (ASD) and children in two control groups-one from the general population and one with non-ASD developmental problems. Data from parent-completed questionnaires, interviews, clinical evaluations, biospecimen sampling, and medical record abstraction focus on the prenatal and early postnatal periods. SEED is a valuable resource for testing hypotheses regarding ASD characteristics and causes.

Demystifying moderators and mediators in intellectual and developmental disabilities research: a primer and review of the literature

Intellectual and developmental disability (IDD) researchers have been relatively slow to adopt the search for moderators and mediators, although these variables are key in understanding how and why relationships exist between variables. Although the traditional method of causal steps is useful for describing and understanding moderators and mediators, it is not sufficient for statistical analysis. The theoretical and statistical processes of evaluating moderators and mediators are explained in terms familiar to IDD psychologists, using examples from IDD literature. Moderator and mediator analyses in five leading IDD journals are assessed for patterns of usage. Although the number of publications in the past decade exceeds previous years, the field is still behind others in both the quantity and quality of the use of moderators and mediators. The field as a whole will advance if the recent theoretical and technical advances outlined in this paper are employed.

Does the ability to represent movement at a neural level influence movement planning?

Event Abstract Back to Event Does the ability to represent movement at a neural level influence movement planning? Kate Wilmut1, Christian Hyde2, Ian Fuelscher3 and Jacqueline Williams4* 1 Oxford Brookes University, United Kingdom 2 Deakin University, Australia 3 Victoria University, Australia 4 Victoria University, Institute of Sport, Exercise and Active Living and School of Sport and Exercise Science, Australia Motor planning refers to the ability to consider the goal of an upcoming action and select an appropriate movement plan, taking into account necessary internal and external variables. Research suggests this process requires individuals to perform an internal movement simulation (or motor imagery; Johnson, 2000). That is, subconsciously, an individual simulates the movement plan to ensure it achieves the required goal. Increasingly, it has been suggested that motor planning deficits in clinical groups (e.g. hemiplegia) stem from a reduced ability to perform internal movement simulations (e.g. Craje et al., 2010). However, research has so far failed to directly assess the relationship between motor planning and imagery abilities. This was the goal of this study. A sample of 35 healthy young adults participated. Motor planning was assessed using an end-state comfort task requiring participants to grasp and turn an octagon. The movement sequences required participants to plan their grasp ahead of time to ensure end-state comfort. Motor imagery was assessed using the hand rotation task, requiring participants to imagine their hand in various degrees of rotation to allow them to determine the handedness of presented stimuli. Correlations between the two measures were in the range of .3-.4 and linear regression indicated that motor imagery ability was a significant predictor of performance on the planning task, though effects were small. We consider the implications of these findings, which although moderate, provide positive support to current theory using a typically developing sample, and discuss other factors that may further contribute to planning ability. References Crajé, C., M. van Elk, et al. (2010). "Compromised motor planning and motor imagery in right hemiparetic cerebral palsy." Research in Developmental Disabilities 31: 1313-1322. Johnson, S. H. (2000). "Thinking ahead: the case for motor imagery in prospective judgements of prehension." Cognition 74: 33-70. Keywords: Motor planning, Motor Imagery, motor control theory, end-state comfort effect, hand rotation Conference: ACNS-2012 Australasian Cognitive Neuroscience Conference, Brisbane, Australia, 29 Nov - 2 Dec, 2012. Presentation Type: Poster Presentation Topic: Motor Citation: Wilmut K, Hyde C, Fuelscher I and Williams J (2012). Does the ability to represent movement at a neural level influence movement planning?. Conference Abstract: ACNS-2012 Australasian Cognitive Neuroscience Conference. doi: 10.3389/conf.fnhum.2012.208.00162 Copyright: The abstracts in this collection have not been subject to any Frontiers peer review or checks, and are not endorsed by Frontiers. They are made available through the Frontiers publishing platform as a service to conference organizers and presenters. The copyright in the individual abstracts is owned by the author of each abstract or his/her employer unless otherwise stated. Each abstract, as well as the collection of abstracts, are published under a Creative Commons CC-BY 4.0 (attribution) licence (https://creativecommons.org/licenses/by/4.0/) and may thus be reproduced, translated, adapted and be the subject of derivative works provided the authors and Frontiers are attributed. For Frontiers’ terms and conditions please see https://www.frontiersin.org/legal/terms-and-conditions. Received: 13 Oct 2012; Published Online: 17 Nov 2012. * Correspondence: Dr. Jacqueline Williams, Victoria University, Institute of Sport, Exercise and Active Living and School of Sport and Exercise Science, Melbourne, Australia, jacqueline.williams@vu.edu.au Login Required This action requires you to be registered with Frontiers and logged in. To register or login click here. Abstract Info Abstract The Authors in Frontiers Kate Wilmut Christian Hyde Ian Fuelscher Jacqueline Williams Google Kate Wilmut Christian Hyde Ian Fuelscher Jacqueline Williams Google Scholar Kate Wilmut Christian Hyde Ian Fuelscher Jacqueline Williams PubMed Kate Wilmut Christian Hyde Ian Fuelscher Jacqueline Williams Related Article in Frontiers Google Scholar PubMed Abstract Close Back to top Javascript is disabled. Please enable Javascript in your browser settings in order to see all the content on this page.

The Study to Explore Early Development (SEED): A Multisite Epidemiologic Study of Autism by the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network

The Study to Explore Early Development (SEED): A Multisite Epidemiologic Study of Autism by the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network

Beyond matching on the mean in developmental disabilities research

The matching of groups is a traditional way to control for confounding variables in developmental disabilities research. The equivalency of means across groups is routinely checked for these variables, but not the homogeneity of their variances or the shapes of their distributions. In the present paper, it is argued that group matching can go seriously wrong unless it directly confronts the distributional concerns by the use of well-known statistical indices and very simple graphical displays of the distributions. The question of the equivalency of item response profiles is also addressed since two participants or two groups of participants can obtain the same overall score on the matching variable by passing different items. In this case, the matching cannot be considered satisfactory because of poor concordance between the molar (overall score) and molecular (item scores) levels of matching. Angoff's Delta plot method, a statistical approach for detecting differential item functioning across small groups is described. It is promising as a simple way to prove whole test/individual item correspondence and, in addition, a useful tool for making post hoc statistical analyses at the item level on the dependent variables.

CIES Bibliography 2010

CIES Bibliography 2010

Toward Multi-Scale Computational Modeling in Developmental Disability Research

The field of theoretical neuroscience is gaining increasing recognition. Virtually all areas of neuroscience offer potential linkage points for computational work. In developmental neuroscience, main areas of research are neural development and connectivity, and connectionist modeling of cognitive development. In this paper, we suggest that computational models can be helpful tools for understanding the pathogenesis and consequences of perinatal brain damage and subsequent developmental disability. In particular, designing multi-scale computational models should be considered by developmental neuroscientists interested in helping reduce the risk for developmental disabilities.

Using relative improvement over chance (RIOC) to examine agreement between tests: Three case examples using studies of developmental coordination disorder (DCD) in children

Although statistics such as kappa and phi are commonly used to assess agreement between tests, in situations where the base rate of a disorder in a population is low or high, these statistics tend to underestimate actual agreement. This can occur even if the tests are good and the classification of subjects is adequate. Relative improvement over chance or RIOC is a statistic that can correct for this bias; however, it is not yet commonly used in the health sciences or disability fields. In this paper, we introduce RIOC and demonstrate its application using the results from 3 previously published studies, all of which assessed the agreement between tests commonly used to identify children with a neurodevelopmental disorder known as developmental coordination disorder (or DCD). The results illustrate the differences between kappa and RIOC under conditions where the distribution of scores in a 2 × 2 table is unbalanced. The introduction of this statistic in the area of developmental disabilities research is encouraged.

From the Editor

From the Editor

Teaching requesting and rejecting sequences: An important step in early communication programming

1 ed from: Choi, H., O’Reilly, M., Sigafoos, J., & Lancioni, G. (2010). Teaching requesting and rejecting sequences to four children with developmental disabilities using augmentative and alternative communication. Research in Developmental Disabilities, 31, 560–567. Source of funding and disclosure of interest: No source of funding reported, and the original authors of this research report no conflicts of interest. This commentary was edited solely by Dr. Ralf Schlosser because the Choi et al. study was co-authored by Dr. Jeff Sigafoos; hence, Dr. Sigafoos had no involvement in editing or decision-making related to this commentary.

Modified speech element of Fast ForWord-Language not shown to be value-added for improving phonemic awareness or reading skills in primary-grade students with language impairments and concurrent reading difficulties

ed from: Loeb, D. F., Gillam, R. B., Hoffman, L., Brandel, J., & Marquis, J. (2009). The effects of Fast ForWord Language on the phonemic awareness and reading skills of school-age children with language impairments and poor reading skills. American Journal of Speech-Language Pathology, 18, 376–387. Source of funding and disclosure of interest: This study was supported by National Institutes of Health Grants U01 DC04560 and P30 HD02528 as well as the Kansas Mental Retardation and Developmental Disabilities Research Center, BNCD, P30 DC005803; the original authors of this research report no conflicts of interest.

Accumulation of Phosphorylated tau in neurites is the earliest cytoskeletal abnormality in aging and Alzheimer's disease

Wei Qian, Hongwei Liang, Jianhua Shi, Jianlan Gu, Xiaolin Wu, Shibao Wang, Cheng-Xin Gong, Fei Liu, Department of Biochemistry, Medical School, Nantong University, Nantong, China; Jiangsu Key Laboratory of Neuroregeneration, Medical School, Nantong University, Nantong, China; Department of Neurochemistry, New York State Institute for Basic Research in Developmental Disabilities, Staten Island, NY, USA. Contact e-mail: weiqianhuang@hotmail.com

Breve revisión de la investigación básica y aplicada sobre los ansiolíticos de benzodiazepina: Implicaciones para el tratamiento de la agresión en las discapacidades de desarrollo

Recent research in both the basic behavioral pharmacology literature and applied developmental disabilities literature suggests a relationship between increased aggression and the use of benzodiazepines, specifically anxiolytics. The purpose of this review is to tie together the findings on benzodiazepine anxiolytics from basic pharmacology research and applied research in developmental disabilities. The similarities and differences in the research in both areas will be reviewed. Implications for the treatment of aggression in those with developmental disabilities are discussed.

Introduction: Spina bifida—A multidisciplinary perspective

Spina bifida is the most common birth defect affecting the central nervous system (CNS) and is often characterized as the most complex birth defect compatible with survival [Liptak and El Samra, 2010]. Because of its complexity, the diagnosis and treatment of infants born with spina bifida begins before birth and through adulthood, involving multiple disciplines. Not surprisingly, research has flourished across several domains over the past decade. The purpose of this special issue of Developmental Disabilities Research Reviews is to systematically review research on spina bifida within different domains in an effort to promote integration and awareness of this research across disciplines involved directly with spina bifida. In addition, we hope to increase the awareness of contemporary research and treatment strategies for researchers and practitioners involved with other developmental disabilities. Although some aspects of spina bifida have been reviewed as part of previous issues, this is the first issue of the journal specifically devoted to spina bifida since an issue on neural tube defects edited by Sells [1998].

A quantitative synthesis of developmental disability research: The impact of functional assessment methodology on treatment effectiveness.

Although not essential for a diagnosis, Autism Spectrum Disorders (ASD) and Intellectual Disability (ID) are commonly associated with a broad range of maladaptive behaviors including self-injurious behavior (SIB), property destruction, aggression towards others, severe disruptions, and stereotypic behaviors (e.g., body rocking). Maladaptive behaviors can lead to poor social relationships; poor academic success, destruction of property, and serious medical problems, such as tissue damage. For these reasons, the assessment and treatment of such behaviors in individuals with ASD and ID is an important component of any comprehensive approach to rehabilitation. A behavioral approach to intervening with maladaptive behaviors has been consistently documented as the most efficacious approach for treating aberrant behaviors (Gresham et al., 2004; Campbell, Herzinger, & James, 2007). The key to effective treatment is the identification of the function, or purpose, of the behavior. The most current taxonomy of behavioral function focuses on three types of reinforcement as the major mechanisms maintaining behavior: (a) positive reinforcement, (b) negative reinforcement, and (c) automatic reinforcement. In the last 25 years, there has been a trend toward developing treatments for maladaptive behaviors following determination of the hypothesized functions of the behaviors through Functional Behavior Assessments (FBA). Based on the ascribed function of the target behavior, an appropriate treatment package can be selected. Researchers assessing maladaptive behaviors agree that identifying the function of the target behavior is integral in the treatment selection process; thus FBAs are a core feature in the development of interventions designed to ameliorate aberrant behaviors (Yarborough & Carr, 2000) and required by federal education law (e.g., Individuals with Disabilities Education Act [IDEA], P.L. 105-117, 1997). Although required by law in some cases, the term FBA is still somewhat vague. Generally, FBA refers to any methodology used to identify the purpose of behavior and encompasses indirect assessments, (e.g., interviews, rating scales), descriptive assessments (e.g., A-B-C sheets, direct observation with no variable or environment manipulation); and functional analyses (FA; e.g., analogue conditions in which antecedent or consequent variables are systematically manipulated within an experimental design). For the purposes of this paper, we are using the term FA to describe all experimental analyses. The term Behavioral Assessment (BA) refers to those assessments which are non-experimental in nature and includes both indirect and descriptive assessments. Several researchers have made comparisons across FBA methodologies and, in general, the findings support the FA as the for ascribing function and consequently developing function-based treatments. Paclawskyj et al. (2001) and Durand and Crimmins (1988) both reported positive correlations when comparing FA outcomes to the functions hypothesized by the Questions About Behavioral Function (QABF; Matson & Vollmer, 1995) and the Motivation Assessment Scale (MAS; Durand & Crimmins, 1992), respectively. In contrast, Hall (2005) found that descriptive and experimental methods of FBA agreed only 25% of the time. In almost all published accounts of comparison data, the FA represented the gold standard for validity tests of other types of assessment. Others have looked beyond comparisons of ascribed function across FBA types and instead assessed intervention outcomes across methodologies. Knowing which FBA methodology is associated with more successful treatment outcomes is imperative. Didden, Korzilius, van Oorsouw, and Sturmey (2006) made comparisons across descriptive and experimental FBAs and found that treatments based on experimental methods resulted in significantly higher treatment effectiveness scores. Herzinger and Campbell (2007) conducted a meta-analysis of autism literature on the assessment and treatment of maladaptive behaviors. …

Quality of Life for the Camberwell Cohort

Background Despite the acknowledged difficulties of measuring satisfaction for people with intellectual disabilities, the current study examined the quality of life (QoL) of the Camberwell Cohort, a total population sample of people with severe intellectual disability and/or autism [Wing & Gould, Epidemiology and Classification, 9, 1979, 11].Methods The Lifestyle Satisfaction Scale (LSS) [Harner & Heal, Research in Developmental Disabilities, 14, 1993a, 221] was combined with selected questions from the Quality of Life Questionnaire Schalock & Keith 1993, Quality of Life Questionnaire, IDS Publishing Corporation, Worthington and conducted with 12 people with intellectual disabilities and 72 proxy respondents.Results Inter‐rater reliability on overall score was available for 10 participants and was acceptable with a Spearman’s Rank order correlation co‐efficient over 0.8. There were no significant differences between the scores of proxies and service users on the domains of the LSS. The sample of service users who completed the interviews was too small to allow further detailed analysis of their responses. However, responses from the proxy interviews indicated that there were no differences in life satisfaction between those socially impaired and socially able. However those with autism were reported to be less satisfied on Community Satisfaction while those with challenging behaviour had lower scores overall and specifically on Community Satisfaction. Those with an IQ below 50 had lower scores overall, than those with an IQ above 50 and specifically on Recreation Satisfaction. Linear regression analysis on total QoL score indicated that only three variables seemed to be important in predicting proxy QoL scores: challenging behaviour at Time 3, IQ at Time 3 and independent living skills at Time 1.Conclusions Despite the difficulties encountered, this study provided some support for the widely help belief that QoL is lower for those with intellectual disability and for those with challenging behaviour.

Issues in Latex Allergy in Children and Adults Receiving Home Healthcare

Maureen Gavin, BSN, RN-BC, CDDN, is an RN at the New York State Institute for Basic Research in Developmental Disabilities, George A. Jervis Clinic. She is board certified as a gerontological nurse and has her certification in developmental disabilities. She is chairperson of the New York Counties Registered Nurse Association (NYCRNA) District 13, Staten Island chapter and co-chairperson of Zone 7 of the New York State Mental Retardation and Developmental Disabilities Nurses Association (NYMRDD). Paul Patti, MA is a Research Scientist and Behavioral Consultant at the New York State Institute for Basic Research in Developmental Disabilities, George A. Jervis Clinic. Address for correspondence: Maureen Gavin, BSN, RN-BC, CDDN, New York State Institute for Basic Research in Developmental Disabilities, George A. Jervis Clinic, 1050 Forest Hill Road Staten Island, New York, 10314 ([email protected]). The authors have disclosed that they have no financial relationships related to this article. Acknowledgments: The authors wish to express their deep appreciation to Eugene Gavin and Rochelle Patti for their understanding and support. Natural rubber latex allergy poses a serious health threat to children and adults who are receiving home healthcare. Early recognition of the symptoms and preventative measures are the key to stopping the progression of the allergy, because each exposure to latex increases the sensitization and the risk for developing an anaphylactic reaction. The different types of reactions, risk factors, controversies surrounding latex allergies, prevention strategies, and resources are explored in this article.