Studying Development in Williams Syndrome: Progress, Prospects, and Challenges

Using Common Determinants of Out-of-Home Care to Profile Parents of Children and Adolescents with a Disability: an Exploratory Study Abstract Objectives This study examined whether interrelationships between common psychosocial determinants of parental decisions to seek out-of-home care can identify parent profiles within a sample of parents of children and adolescents with a disability. Method Two hundred and sixteen parents completed a questionnaire containing measures of nine commonly reported psychosocial determinants of out-of-home care (e.g. child behaviour and support needs; parent hassles, mental health and coping). Result K-means cluster analysis revealed four parent profiles. The ‘parents with significant parenting stressors and demands’ resemble parents who have sought out-of-home care in the past (e.g. children/adolescents with high support needs and poor psychosocial adjustment). In contrast, the ‘parents with low parenting stressors and demands’ display positive psychosocial adjustment to the parenting role. The ‘parents with parenting resilience’ exhibit positive psychosocial adjustment to the difficult parenting circumstances they are experiencing. In contrast, the ‘parents with psychosocial adjustment difficulties’ show negative psychosocial adjustment despite the absence of difficult parenting circumstances. Conclusion Psychosocial factors related to out-of-home care can meaningfully distinguish parents raising children and adolescents with a disability from one another. With further validation, the profiles uncovered within this study could inform service responses to build parenting capacity, and mitigate risk of seeking out-of-home care.

Nationwide Survey of Healthcare Services for Autism Spectrum Disorders (ASD) in Italy Abstract Objectives ASD is a lifelong multifaceted condition with considerable impact and costs to the single patients, their family and wider society, hence emphasizing the need of tailoring services for ASD subjects and their families. In Italy, recent efforts have been made to harmonize and promote the appropriateness of interventions for ASD people. At present, scattered information on services for people with ASD is available. The aim of this study was to survey the presence and distribution of child and adolescent mental health services (CAMHs) in Italy, devoting a specific focus on their capacity to provide care to ASD patients. Methods CAMHs based on local health services, public and university hospitals, and care/research institutions, as well as private (INHS-accredited) units were invited to participate to present investigation filling in a questionnaire assessing relevant dimensions for public health, namely overall structural capacity and ASD care processes. Results Heterogeneity of the results among geographical macro-areas in CAMHs provision was found. Specifically, for ASD care, diagnosis and intervention strategies resulted to be unevenly distributed across the Italian territory, and the level of service integration throughout transition into adulthood resulted to be low. Conclusions Results from this survey contribute to increase the knowledge on services provided in Italy to people with ASD, and suggest potential targets to improve ASD management. The final aim is to ensure that the conditions are in place to achieve the adequate capacity to respond to the needs of individuals affected and their families over time and across the whole country.

Smartphone-Based Technology to Support Functional Occupation and Mobility in People with Intellectual Disability and Visual Impairment Abstract Objectives This study evaluated a smartphone-based technology package to guide eight participants with intellectual disability and visual impairment to engage in functional occupation and mobility (i.e., collect activity-related items and put them away at the appropriate destinations). Methods The technology package used during intervention and follow-up included six Samsung J4 Plus smartphones with Android operating system 8.1, which were programmed through MacroDroid. Three smartphones were placed in as many boxes each of which contained objects related to one specific activity. The other three smartphones were located at the destinations at which the objects of the three boxes were to be put away. Every session started with one of the smartphones at the boxes calling the participant. When the participant got an object, the smartphone at the destination that he or she was to reach started calling. Reaching the destination and putting away the object caused a brief period of preferred stimulation and then the process continued with a smartphone from the boxes calling again. Results During the baseline (i.e., without the technology), the participants’ mean frequency of responses carried out independently, that is, of objects collected and put away without prompting, was zero or virtually zero. During the intervention and follow-up phases, their overall mean frequency of independent responses varied from above 9 to above 17 per 20-min session. Conclusions This technology package might be useful to support functional occupation and mobility in people like the participants of this study.

Self-Directed Video Prompting and Least-to-Most Prompting: Examining Ways of Increasing Vocational Skill Acquisition Among Students with Autism Spectrum Disorder and Intellectual Disability Abstract Objective The purpose of this study was to examine the effects of point-of-view video prompting (VP) as a self-prompting strategy with a least-to-most prompting (LMP) system on the rapidity of skill acquisition of two students with autism spectrum disorder (ASD) and two students with intellectual disability (ID) when working on school-based vocational tasks. Methods We used multiple probes across students design of single-case experimental methodology to examine whether or not causal relation existed between the intervention and students’ vocational skill acquisition and follow-up performance. Target tasks involved both process and basic functional mathematics steps that required students to pay attention to the process of task completion rather than the functional step itself. Results All students showed immediate and considerable improvement in skill acquisition between baseline and intervention. Furthermore, all students completed the tasks with an average of over 90% accuracy once the LMP was removed. The four students in this study required two to six intervention trials to reach 100% accuracy without the use of LMP, with a mean of four trials. Tau-U effect size showed a strong effect of the intervention on skill acquisition and follow-up performance. Conclusions VP and LMP as a combined intervention can be effective in teaching vocational tasks that involve process steps to students with both ASD and ID. VP can be a useful support for students with ASD and ID in school, community, and employment settings to decrease reliance on adult prompting and increase independence.

Neurodevelopment in Infants with Moderate Neonatal Risk and Its Association with Biological and Environmental Factors Abstract Objectives Moderate-risk neonates (MRNs) are newborns who usually remain hospitalized in neonatal intensive care units (NICU) after birth. Although they have low rates of mortality, morbidity burden may be significant and involve neurological risk. The aim of this study was to estimate the prevalence of neurodevelopmental disorders and the influence of biological and socio-environmental factors on the neurodevelopment of MRN. Methods A cross-sectional study was performed on a sample of 162 MRNs aged 2–24 months, who remained in NICU ≥ 72 h after birth, with gestational age (GA) ≥ 34 weeks, birth weight ≥ 1500 g, and normal neurological and clinical examinations by the time of hospital discharge. Four neurodevelopmental areas were assessed using the Argentinian test PRUNAPE: language (LG), fine and gross motor skills (FM and GM), and personal-social skills (PS). Data from biological (gestational, perinatal and postnatal) and socio-environmental factors were collected through parental questionnaires. Results Thirty-four percent of infants failed the test. Gross motor was the most affected area (14.2%), followed by LG (11.7%), FM (7.4%), and PS (4.3%). Among gestational factors global failure was associated with drugs and alcohol consumption (p ≤ 0.029). Language was associated with maternal smoking (p = 0.007; OR 3.5), FM (p = 0.009; OR 13.0), and GM (p = 0.002; OR 10.6) with drug use, and both LG (p = 0.000; OR 22.6) and GM (p = 0.007; OR 16.2) with alcohol consumption during pregnancy. Infants born by cesarean had a higher risk of failure than those born by vaginal delivery (p = 0.049; OR: 2.2), as well as infants with pathological complementary diagnosis (p = 0.001; OR 2.7). Mechanical ventilation was associated with FM disorders (p = 0.025; OR 4.2). Children with siblings had a higher risk of failing the test than only children (p = 0.041; OR 2.0). Conclusions Rate of neurodevelopmental disorders in MRN exceeds widely that of the general population. GM was the most affected area. Maternal addictions, cesarean birth, pathological complementary studies, MV, and having siblings are factors associated with failure in the screening.

Interventions for Daily Living Skills in Individuals with Intellectual Disability: a 50-Year Systematic Review Abstract Objectives There has been a recent upward trend in studies evaluating the effectiveness of interventions to increase adaptive behavior in individuals with autism spectrum disorder (ASD); however, fewer studies have focused on individuals with intellectual disability (ID) without comorbid ASD. The aim of the present review was to conduct a systematic review of studies published over the last 50 years that aimed to improve activities of daily living in children and adults with ID. Methods The database PsycInfo was searched using specific keywords with a publication date range of 1968 to August 2018. The results of this search yielded 193 total results. Results Based on inclusion and exclusion criteria, 20 studies were included in the present review. Various aspects of these studies, including target skills, intervention techniques, and outcomes, are summarized. A variety of behavioral principles were found to effectively increase acquisition and use of daily living skills. Conclusions Certain trends in the literature, such as a focus on parent or caregiver training and a move toward more technology-based interventions, were identified. Future research on this population has clinical implications for access to behavioral interventions for individual with developmental disabilities.

Promoting Occupational Engagement and Personal Satisfaction in People with Neurodevelopmental Disorders via a Smartphone-Based Intervention Abstract Objectives This study assessed a smartphone-based program to foster basic occupational engagement and personal satisfaction, and eventually increase physical exertion (heart rates), in people with extensive neurodevelopmental disorders. Methods The program relied on a Samsung Galaxy A3 smartphone with Android 6.0 operating system, near-field communication function, and MacroDroid application. Seven participants were involved. The participants’ occupational responses consisted of putting special (hard and thick) cards into an elevated box (into contact with the smartphone) by stretching their arm. The responses activated the smartphone, which delivered brief periods of preferred stimulation. Failure to produce responses led the smartphone to deliver a verbal prompt/encouragement to respond. Results All participants had significant increases (p < 0.01) in occupational responses and heart rates, and six of them also showed a significant increase in the level of personal satisfaction, during program sessions as opposed to baseline or control sessions. The Kolmogorov–Smirnov test and paired t test were used to assess the changes across sessions. Conclusions A simple smartphone-based program might be suitable to support occupational engagement, increase heart rates, and foster personal satisfaction in people with extensive neurodevelopmental disorders.

Child-Directed Interaction Training for Mothers of Children with Autism Spectrum Disorder: Use of a Visual Handout Abstract Objectives Involving parents in implementing interventions for children with ASD plays a significant role in developing their social skills. However, parents of children with ASD may have characteristics of broader autism phenotype (BAP) including aloofness, rigidity, and pragmatic language deficits. These characteristics can make it difficult for parents to have effective interactions with their children. Methods This paper introduces a handout created specifically for parents with BAP traits. We describe the effects of this visual aid on one mother’s progress in learning the skills of the child-directed interaction, which is the first phase of parent-child interaction therapy and is called child-directed interaction training (CDIT) when used as a stand-alone parent training program for young children. Results We present a case study of one mother with BAP traits who had difficulty learning and implementing the CDIT skills and illustrate how the handout affected her learning of these skills during training sessions. Conclusions Findings suggest that in parent-mediated intervention for children with ASD, therapists should consider the possibility of BAP and the use of visual aids such as the handout to improve parent understanding and use of the CDIT skills.

Using Modified TAGteach ™ Procedures in Increasing Skill Acquisition of Dance Movements for a Child with Multiple Diagnoses Abstract Objectives Teaching with acoustical guidance (TAG), which involves the use of a brief and consistent sound to provide feedback on a targeted behavior, has demonstrated positive effects on the acquisition of various athletic skills. The majority of the research examining TAG has focused on typically developing learners. The purpose of this study was to evaluate modified TAGteach™ methods (a treatment package involving TAG) on the acquisition of dance movements for a child with multiple diagnoses. Methods This study used a multiple baseline design across behaviors to examine the effects of TAGteach methods on the acquisition of novel dance movements. The participant was a child with multiple diagnoses (attention deficit hyperactivity disorder, oppositional defiant disorder, among others) who regularly participated in a dance studio program. Results Results indicated that the use of the modified TAGteach methods resulted in skill acquisition for three different topographies of targeted dance movements: a turn, kick, and leap. While the social validity results were varied between the participant and caregivers, responses for all topographies were higher at the conclusion of the study. Conclusions The study adds to the growing TAGteach literature for sports skill acquisition and suggests an effective use in a new population. Implications for practice and future research are discussed.