Using a community engaged research approach to develop the social skills training program for adults with Williams syndrome.

This article describes the development of a distance-delivered social skills training program for adults with Williams syndrome (SSTP-WS) through a community engaged approach. Throughout six phases of development, the research team received input from adults with Williams syndrome, caregivers, service providers, educators, and researchers on (a) the need for a training program and topics to be addressed (Phase 1), (b) an initial draft of the SSTP-WS (Phase 3), (c) the intervention pilot study (Phase 5), and (d) feedback to provide context for the results of the study (Phase 6). The development of the SSTP-WS resulted in an intervention aligned with the Williams syndrome community's values and needs that supports the unique cognitive and behavioral phenotypes and social characteristics of this low incidence disability population.

Perspectives of Adults without Disabilities on their Friendships with Individuals with Intellectual and Developmental Disabilities.

Friendships contribute to positive social outcomes such as the promotion of prosocial behaviors and social well-being and can lead to an overall healthy quality of life. Despite the importance of friendships, little is known about how individuals without disabilities develop and maintain friendships with individuals with intellectual and developmental disabilities. Using a phenomenological research design, the current study explored the lived experiences of 17 adults without disabilities who discussed the development and maintenance of their friendship with an individual with intellectual and developmental disabilities. Semi-structured interviews were conducted and subsequently collaborative, open coding was used to identify codes and themes across participants. Three main themes emerged related to 1) factors that facilitated friendship development; 2) factors that contributed to friendship maintenance; and 3) impacts of the friendship for both individuals with and without intellectual and developmental disabilities. Implications of the results are discussed as well as future directions for research.

Social support as a mediator of stress and life satisfaction for people with intellectual or developmental disabilities during the COVID-19 pandemic.

INTRODUCTION: This study examined factors that predict stress level and life satisfaction among adults with intellectual or developmental disabilities during the COVID-19 pandemic and the role of social support. METHOD: From a larger study about the experiences during the pandemic of 2028 individuals with and without disabilities, 181 adults with intellectual or developmental disabilities (or proxy) responded. RESULTS: Most respondents with intellectual or developmental disabilities (92.8%) reported negative impacts from the pandemic, with 55.2% of the 96 employed pre-pandemic reporting impacted employment, including job loss. The negative impact of the pandemic was a significant predictor of stress level; social support was related to reduced stress. Stress level and the negative impact of the pandemic were inversely related to life satisfaction; social support was positively related to life satisfaction. Social support partially mediated the association between stress level and life satisfaction. DISCUSSION: Comprehensive services and social support systems are needed to combat the impact of the pandemic.

Applying the self-determination theory to develop a school-to-work peer mentoring programme to promote social inclusion.

Social inclusion of individuals with intellectual and developmental disabilities (IDD) is related to positive mental health and social outcomes; yet, individuals with IDD experience societal barriers that limit opportunities for community participation. Providing opportunities for interactions between individuals with and without IDD through peer mentoring may diminish barriers and improve community inclusion. Guided by the self-determination theory, the current report describes the development of a peer mentoring programme to promote the natural process of building intrinsic motivation and personal growth through opportunities for individuals without disabilities to socialize with individuals with IDD on a large university campus and throughout the surrounding community. The theoretical framework that informed the development of the peer mentoring programme is described, as well as the participants, the setting in which the programme is situated, the structure of the programme, the initial impacts and improvement of the programme over time, including approaches to sustainability, and implications for future research and practice.

Responses to bullying among individuals with intellectual and developmental disabilities: Support needs and self-determination.

BACKGROUND: Compared to the general population, individuals with intellectual and developmental disabilities (IDD) more often experience bullying and its negative social and emotional impacts. Prior studies explored bullying of individuals with IDD primarily through investigations of the perspectives of others and the negative impacts of bullying. The current study examined how individuals with IDD describe their responses to experiences of bullying, with a focus on whether responses included component skills of self-determination. METHOD: Eighteen adults with IDD (50% female) aged 18-63 years were interviewed about their experiences with bullying. Interviews were analysed to determine responses to bullying and the degree to which their responses demonstrated self-determination. RESULTS: Data analysis revealed two primary themes, outside support and self-determination, with additional subthemes. CONCLUSIONS: Findings provide a more nuanced description of the ways in which individuals with IDD respond to bullying, including the demonstration of self-determination skills. Implications for research and practice are discussed.

Putting Concepts Into Action: A Brief Description of 2022 BACB Ethics Code Standard 1.07 & Actionable Recommendations for Evolving Practices of Behavior Analysts.

For over a decade, behavior analysts have been calling for more culturally responsive practices. Within the newest edition of the Ethics Code for Behavior Analysts, one addition in particular was Standard 1.07 Cultural Responsiveness and Diversity (Behavior Analyst Certification Board, 2020b). The inclusion of this new standard shows positive movement but there is more to unpack. This article seeks to contextualize the relevance and necessity of Standard 1.07 both at a societal level and within the field of applied behavior analysis (ABA). A timeline of previous calls to actions and changes within ABA that align with the inclusion of this standard is discussed along with the obstacles that hindered progress. Lastly, directions are provided for how to make behavior analytic practices more culturally responsive through confronting our personal biases, using culturally responsive pedagogies, updating and adapting our practices regarding the selection of target skills and assessment administration, and collaborating with our clients and their teams. Through an understanding of its urgency and direct applications into our work, this article seeks to aid behavior analysts in shifting our practices to being more culturally responsive.

An evaluation of preference stability within MSWO preference assessments for children with autism.

Previous research has commonly evaluated preference stability over time and across multiple preference assessment administrations. No studies have evaluated shifts in preference across consecutive rounds of a single preference assessment, where rounds refer to each time the experimenter resets the stimulus-presentation array. The purpose of the present study was to examine the stability of stimulus selections across successive rounds of a multiple-stimulus-without-replacement (MSWO) preference assessment with different classes of stimuli for children with autism. The study involved a secondary data analysis and calculation of preference stability across consecutive rounds using Spearman rank-order correlation coefficients (Spearman's ρ ) for 17 participants across 40 MSWO preference assessments. Patterns of preference stability were observed in 24 out of the 40 assessments (60%) indicating that children's preferences in this study were slightly more likely to be classified as stable than other observed patterns of responding.

Anxiety, concerns and COVID-19: Cross-country perspectives from families and individuals with neurodevelopmental conditions.

Background: The COVID-19 pandemic had a major impact on the mental health and well-being of children with neurodevelopmental conditions (NDCs) and of their families worldwide. However, there is insufficient evidence to understand how different factors (e.g., individual, family, country, children) have impacted on anxiety levels of families and their children with NDCs developed over time. Methods: We used data from a global survey assessing the experience of 8043 families and their children with NDCs (mean of age (m) = 13.18 years, 37% female) and their typically developing siblings (m = 12.9 years, 45% female) in combination with data from the European Centre for Disease Prevention and Control, the University of Oxford, and the Central Intelligence Agency (CIA) World Factbook, to create a multilevel data set. Using stepwise multilevel modelling, we generated child-, family- and country-related factors that may have contributed to the anxiety levels of children with NDCs, their siblings if they had any, and their parents. All data were reported by parents. Results: Our results suggest that parental anxiety was best explained by family-related factors such as concerns about COVID-19 and illness. Children's anxiety was best explained by child-related factors such as children's concerns about loss of routine, family conflict, and safety in general, as well as concerns about COVID-19. In addition, anxiety levels were linked to the presence of pre-existing anxiety conditions for both children with NDCs and their parents. Conclusions: The present study shows that across the globe there was a raise in anxiety levels for both parents and their children with NDCs because of COVID-19 and that country-level factors had little or no impact on explaining differences in this increase, once family and child factors were considered. Our findings also highlight that certain groups of children with NDCs were at higher risk for anxiety than others and had specific concerns. Together, these results show that anxiety of families and their children with NDCs during the COVID-19 pandemic were predicted by very specific concerns and worries which inform the development of future toolkits and policy. Future studies should investigate how country factors can play a protective role during future crises.

A Distance-Delivered Social Skills Program for Young Adults with Williams Syndrome: Evaluating Feasibility and Preliminary Efficacy.

Adults with Williams syndrome (WS) display hypersocial behaviors and experience social skills deficits. To improve social outcomes, we evaluated the feasibility, acceptability, and preliminary efficacy of an 8-week distance-delivered social skills program for adults with WS. Sessions were offered twice a week for 90 min. Twenty-four adults with WS were assigned to an intervention or waitlist control group. Outcomes were assessed through interviews and surveys with adults with WS, parents, and facilitators. The intervention was rated as acceptable and feasible by all. Parents rated adults with WS as displaying significant improvements in social skills; yet ratings by adults with WS did not change. Adults also displayed increased social skills knowledge following participation. Implications for practice and future research are discussed.

Psychosocial and vocational impacts of COVID-19 on people with and without disabilities.

PURPOSE/OBJECTIVE: The coronavirus disease 2019 (COVID-19) pandemic led to devastating economic impacts and psychosocial changes for individuals around the world, including people with chronic illness and disabilities (CID). This study explored the impacts on employment and how it related to stress and satisfaction with life during COVID-19 between people with and without CID. RESEARCH METHOD/DESIGN: A cross-sectional study design was used with 1,380 adults from 20 countries who were employed before the COVID-19 pandemic, including 318 people with CID. Statistical methods (i.e., descriptive statistics, chi-square analyses, two-way analysis of variances) were used to analyze the time, employment, group, and interaction effects. RESULTS: There were three main findings. (1) Compared with those without CID, individuals with CID were more likely to have their employment impacted by the COVID-19 pandemic and they were more often laid off or dismissed from their job. (2) Individuals with CID reported significantly higher stress and lower life satisfaction compared with those without CID during the COVID-19 pandemic regardless of its impacts on employment. (3) Individuals whose employment was impacted reported significantly lower life satisfaction during the COVID-19 pandemic regardless of their CID status. CONCLUSION/IMPLICATIONS: Findings highlight the employment and psychosocial impacts of a global pandemic and provide implications for moving forward in regards to vocational and psychosocial intervention services and supports that will be needed, especially for those with CID. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Spartan Caregiver Support: Program Description and Key Findings During Michigan's Stay-At-Home Order.

Objectives: The purpose of this paper is to describe a university program, Spartan Caregiver Support, that provided free on-demand telehealth services to caregivers of people with autism during the State of Michigan's 2020 Stay-at-Home order. Method: Participants (n = 17) were caregivers of people with autism residing within the State of Michigan. Participants engaged with program members over video-conference technology, where participants received specific advice to support social and behavioral needs. Results: We found that caregivers reported a variety of social and behavioral concerns, including concerns related to problem behavior, social/play skills, school/academics, and daily living. Conclusions: This program description provides a framework for how to deliver on-demand telehealth support to caregivers of people with autism, especially during moments of crisis or emergency. Supplementary Information: The online version contains supplementary material available at 10.1007/s41252-022-00281-7.

An Examination of Social Skills, Friendship Quality, and Loneliness for Adults with Williams Syndrome.

Individuals with Williams Syndrome (WS) are hypersocial, overfriendly, and experience social skills deficits that may adversely impact their social outcomes. This study examined the relation between social skills, friendship quality, and feelings of loneliness for adults with WS as reported by 114 parent-adult with WS dyads. Results indicate that although most friends do not live close-by, adults with WS have good quality friendships and do not report high feelings of loneliness. Positive friendship qualities were found to partially mediate the relationship between social skills impairments and social feelings of loneliness. Findings indicate that although adults with WS experience social skills deficits and struggle to maintain friendships in their immediate community, they still report positive friendship qualities and low feelings of loneliness.

Psychometric Properties and Utility of the Social Vulnerability Questionnaire for Individuals with Intellectual and Developmental Disabilities.

Although it is well-known that individuals with intellectual and developmental disabilities (IDD) are socially vulnerable, the field lacks valid assessments to identify risk factors for victimization. Parents/caregivers of 428 individuals with IDD (ages 12-53) completed the social vulnerability questionnaire (SVQ), a measure developed to assess specific aspects of social vulnerability among individuals with various forms of IDD. This study examined the psychometric structure of the SVQ (exploratory and confirmatory factor analysis), and the utility of the factors of the SVQ as predictors of diagnostic category (through discriminate function analysis). Results provide psychometric support for use of the SVQ and its factors for further research and as part of a clinical assessment battery to assess social vulnerability and to develop interventions.

Parents, Peers, and Musical Play: Integrated Parent-Child Music Class Program Supports Community Participation and Well-Being for Families of Children With and Without Autism Spectrum Disorder.

Opportunities for meaningful community participation may influence the development and well-being of individuals with autism spectrum disorder (ASD) and their families as well as impact how community members perceive and understand ASD. In the current study, we aimed to understand how a parent-child integrated music class program could be used to promote community participation and family well-being. Caregivers of preschoolers (2-5 years of age) with ASD and those of peer children with typical development (TD) were interviewed about their participation in a parent-child integrated music class program. Thematic analysis of interviews revealed that all caregivers viewed program participation as positive. Caregivers emphasized increasing connections within families, such as through strengthening parent-child bonds, as well as connections across families, including increased understanding of ASD and sensitivity to the experience of parenting. Many caregivers perceived the class as supporting their parenting and impacting their children's behavior in meaningful ways. Interview themes were supported by measures of caregiver and child program receipt, including questionnaires about family music engagement throughout their time in the class program and behavioral coding of children's engagement during music classes. Findings suggest that integrated community experiences such as parent-child music classes may impact whole family well-being, highlighting the value of integrated community participation experiences at the level of the family system. Parent-child music classes may provide a productive and accessible context for supporting integrated community experiences.

In Their Own Words: Perceptions and Experiences of Bullying Among Individuals With Intellectual and Developmental Disabilities.

Despite the high incidence of bullying among people with intellectual and developmental disabilities (IDD), little research has been conducted with people with IDD as participants reporting their own perceptions and experiences of bullying. To address this shortcoming, we interviewed 18 adults with IDD regarding these issues. Four major themes emerged from our qualitative analysis of the transcribed interviews: (a) bullying is hurtful, (b) why people bully, (c) bullying takes many forms, and (d) bullying can happen anywhere. Though participants' definitions of bullying and explanations for why people bully aligned well with traditional understandings, several reported incidents of bullying were discrepant from the traditional definition, including incidents of abuse and rude behavior. Implications for future research and practice are discussed.

A population-based examination of maltreatment referrals and substantiation for children with autism spectrum disorder.

Children with disabilities experience elevated rates of maltreatment, but little is known about the interaction of children with autism spectrum disorder with child protection systems. A population-based dataset of 24,306 children born in 2008 in Tennessee, which included 387 children with autism spectrum disorder identified through the Autism and Developmental Disabilities Monitoring network, was linked with state child protection records. Rates of maltreatment referrals, screening for further action, and substantiated maltreatment were examined for children with versus without autism spectrum disorder. Significantly more children with autism spectrum disorder (17.3%) than without (7.4%) were referred to the Child Abuse Hotline. Children with autism spectrum disorder were less likely than children without autism spectrum disorder to have referrals screened in for further action (62% vs 91.6%, respectively), but substantiated maltreatment rates were similar across groups (3.9% vs 3.4%, respectively). Girls versus boys with autism spectrum disorder were more likely to have substantiated maltreatment (13.6% vs 1.9%, respectively). The high percentage of children with autism spectrum disorder referred for allegations of maltreatment, the differential pattern of screening referrals in for further action, and the high levels of substantiated maltreatment of girls with autism spectrum disorder highlights the need for enhanced training and knowledge of the complex issues faced by children with autism spectrum disorder, their families, and state welfare agencies.

Teaching Young Adults with Intellectual and Developmental Disabilities Community-Based Navigation Skills to Take Public Transportation.

Facilitating the use of public transportation enhances opportunities for independent living and competitive, community-based employment for individuals with intellectual and developmental disabilities (IDD). Four young adults with IDD were taught through total-task chaining to use the Google Maps application, a self-prompting, visual navigation system, to take the bus to locations around a college campus and the community. Three of four participants learned to use Google Maps to independently navigate public transportation. Google Maps may be helpful in supporting independent travel, highlighting the importance of future research in teaching navigation skills. Learning to independently use public transportation increases access to autonomous activities, such as opportunities to work and to attend postsecondary education programs on large college campuses.Individuals with IDD can be taught through chaining procedures to use the Google Maps application to navigate public transportation.Mobile map applications are an effective and functional modern tool that can be used to teach community navigation.

Addressing social skills deficits in adults with Williams syndrome.

BACKGROUND: Individuals with Williams syndrome (WS) are hypersocial; yet, they experience social difficulties and trouble with relationships. This report summarizes findings from three studies examining the social functioning of adults with WS and the feasibility of a social skills training program for adults with WS (SSTP-WS) through the examination of performance on initial lesson plans. METHOD: Study 1: 114 parents of adults with WS completed the Social Responsiveness Scale-2. Study 2: 10 adults with WS and 12 of their parents participated in focus groups to further describe the deficits identified in Study 1 and to discuss a SSTP-WS. Study 3: 30 adults with WS were randomly assigned to 2 lessons on either conversations or relationships and pre-post change in social skills knowledge was assessed. RESULTS: Study 1 indicates adults with WS experience severe social impairments in social cognition, and mild-moderate impairments in social awareness and social communication. Qualitative results in Study 2 indicate a SSTP-WS should address conversation skills and relationships. In Study 3, participants showed gains in social skills knowledge following completion of lessons. IMPLICATIONS: A SSTP-WS may be beneficial for adults with WS. Future research should describe the social needs of individuals with WS at different ages and should further develop a SSTP-WS.

Let's talk about it: Peer victimization experiences as reported by adolescents with autism spectrum disorder.

Individuals with autism spectrum disorder experience high rates of peer victimization; yet, their personal experiences and perceptions of such victimization are not well understood. In this qualitative investigation, responses to questions about bullying and teasing were examined to gain insight into the perception of peer victimization as reported by adolescents with autism spectrum disorder. While the majority of participants provided examples of peer victimization, their situations differed from items typically assessed on bullying questionnaires. Participants were also able to provide explanations for why they believe they are targets and descriptions of their reactions to bullying. Findings from the interviews are used to provide suggestions for the development of more informative bullying assessments and prevention programs for students with autism spectrum disorder.

Parent and Self-Report Ratings on the Perceived Levels of Social Vulnerability of Adults with Williams Syndrome.

The current study took a multi-informant approach to compare parent to self-report ratings of social vulnerability of adults with Williams syndrome (WS). Participants included 102 pairs of adults with WS and their parents. Parents completed the Social Vulnerability Questionnaire and adults with WS completed an adapted version of the questionnaire. Parents consistently reported higher levels of social vulnerability for their son/daughter than the individual with WS reported, with the exception of emotional abuse. The lower ratings of social vulnerability by adults with WS, compared to their parents, offer new information about their insight into their own vulnerability. These findings highlight the importance of teaching self-awareness as a part of a multi-informant approach to interventions designed to target social vulnerability.