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Over the past two decades cancer was acknowledged as a new health concern for individuals with an intellectual disability (ID). Despite such recognition, no research in the US has sought to examine the uptake of the cancer-preventing, HPV vaccine in people with ID. Physicians act as powerful recommenders of the HPV vaccine and interact with patients and their caregivers. As such, physicians can provide useful contextual insight into this population's vaccination uptake. The purpose of this study was to examine physicians' experiences of recommending the HPV vaccine to females with an ID. An online open-ended survey was employed. Data were analyzed using inductive content analysis. Forty-nine out of 51 physicians had previously recommended the HPV vaccine to females with an ID. Physicians believed the HPV vaccine was important because of this population's noncompliance with pap smears and risk of sexual abuse. Physicians believed the vaccine was less important for patients who were likely sexually inactive. Physicians generally described parents as uncertain, but receptive of the vaccine. There were a few physicians who implied caregivers believed their child would never be sexually active and therefore were not at risk for contracting HPV. Both physicians and parents (as described by physicians) believed receiving immunizations could be traumatic for this population. In conclusion, physicians were supportive of the HPV vaccine for females with an ID and perceived parents as wanting to protect their child, but uncertain about the vaccine's necessity. Further research is needed to better understand this population's gynecological health care needs. [ABSTRACT FROM AUTHOR]

One of the main objectives for people with intellectual disability (with or without other disabilities) is the ability to perform multistep activities (e.g. preparing a sandwich) without external help from a caregiver. This paper provides a review of studies that evaluated technology systems to teach or support people with intellectual and other disabilities to carry out multistep functional activities through the presentation of single-step instructions. A literature search was performed for English language articles indexed in PubMed, PsycINFO and Web of Science. A narrative synthesis of the articles selected was provided together with a quantitative estimate of the effectiveness of their technology-aided interventions. The latter was carried out via the Percent of Nonoverlapping Data (PND) method. Twenty-six articles met inclusion criteria, with most studies following a single-subject research design (n = 25). The technologies identified were grouped into three categories (self-operated, automatic, and intelligent). Overall, the results are encouraging in that most of the technology solutions reviewed led to positive outcomes in terms of increasing independence of people with intellectual disability in performing relevant multistep activities (average PND score = 96.3%). This review highlights that technology systems designed to present single-step instructions can be effective in teaching or supporting the independent performance of multistep activities by people with intellectual disability with or without other disabilities. Only minimal research exists on development and use of intelligent systems. [ABSTRACT FROM AUTHOR]

The goal of this study was to examine the effects of Cognitive Bias Modification training for Interpretation (CBM-I) in socially anxious adolescents with Mild Intellectual Disabilities (MID). A total of 69 socially anxious adolescents with MID were randomly assigned to either a positive or a neutral control-CMB-I-training. Training included five sessions in a 3-week period, and each session consisted of 40 training items. Adolescents in the positive training group showed a significant reduction in negative interpretation bias on the two interpretation bias tasks after training compared to adolescents in the control-training group. Furthermore, in contrast to the control-training group, adolescents in the positive training reported a significant reduction of their social anxiety symptoms 10 weeks post-training. [ABSTRACT FROM AUTHOR]

Sexuality is an important component in people’s lives, however forgotten in people with intellectual disabilities. Faced with this situation, people with intellectual disabilities tend to be in a situation of vulnerability with greater risk of sexual abuse and altered sexual behavior that give them difficulties to have a lasting relationship. A review of the literature was performed in the databases: Medline, Embase, Lilacs and Scielo. Included studies must mention the perception of people with intellectual disabilities about their sexuality in relation to: education, difficulties, strengths, gender identification, the role of the family and their close circle. 898 articles were reviewed by title and abstract. In total, 38 references were selected for full-text review. Being evident the importance of sexuality in people with intellectual disability, this topic should be addressed from a personal level and their close circle (family and support networks) through sex education about: sexuality, anatomy and functioning of the body, sexual abuse, use of contraceptives, and sentimental relationships. Sexuality in people with intellectual disability should be approached in a multidimensional way. An overarching theme is to teach family and educators not to diminish the value that represents sexuality in people and to assist when needed to address the process of sexual development and sexuality. [ABSTRACT FROM AUTHOR]

Mothers of a child with intellectual disability face various challenges in parenting. However, most studies of support for parents of a child with intellectual disability have been conducted with families from Western cultural backgrounds. Little is known about support for families of children with disabilities in China. This study explored the perceptions of Chinese mothers of a child with intellectual disability about the support that they received. Semi-structured interviews were carried out with twelve mothers of a school-aged child with intellectual disability. The data were analysed thematically. It was found that Chinese mothers received support mainly from family members, social contacts, school teachers, and the government. Family conflicts, isolation from friends and community, unequal relationships with school teachers, and restricted access to information appear to be the main barriers for mothers to accessing and utilizing the available support. This research points to potential areas of difference between the experiences of mothers in China and those in Western countries. [ABSTRACT FROM AUTHOR]

Both scripted lessons and unscripted task analyzed lessons have been used effectively to teach science content to students with intellectual disability and autism spectrum disorder. This study evaluated the efficacy, efficiency, and teacher preference of scripted and unscripted task analyzed lesson plans from an elementary science curriculum designed for students with intellectual disability and autism spectrum disorder by evaluating both lesson formats for (a) student outcomes on a science comprehension assessment, (b) sessions to criterion, and (c) average duration of lessons. Findings propose both lesson types were equally effective, but unscripted task analyzed versions may be more efficient and were preferred by teachers to scripted lessons. Implications, limitations, and suggestions for future research are also discussed. [ABSTRACT FROM AUTHOR]

Residential care is among the most intensive forms of treatment in youth care. It serves youths with severe behavioral problems and is primarily focused on targeting externalizing problems. Despite best efforts, effect sizes remain moderate, which may be due to the disregarding of internalizing symptoms - in particular anxiety - and to limitations regarding the delivery model of interventions. This initial randomized controlled trial (n = 37) aimed to examine the effectiveness of a biofeedback videogame intervention (Dojo) as an addition to treatment as usual for youths with and without intellectual disability (ID) in residential care with clinical levels of anxiety and externalizing problems. Dojo targets both anxiety and externalizing problems, and incorporates the principles of conventional treatment, while addressing its limitations. Youths were randomly assigned to play Dojo (eight 30-min gameplay sessions) or to treatment as usual (TAU). Measurements of anxiety and externalizing problems were conducted at baseline, posttreatment, and 4-months follow-up through youths’ self-report and mentor-report. Completers-only analyses revealed decreases in self-reported anxiety and externalizing problems, and mentor-reported anxiety at posttreatment for participants in the Dojo condition compared to the control condition. Only mentor-reported anxiety was maintained at follow-up. No effect was found for mentor-reported externalizing problems. These findings provided preliminary evidence that Dojo is a promising, innovative intervention that engages high-risk youths. Practical implications are discussed. [ABSTRACT FROM AUTHOR]

Understanding the resilience of parents is gaining importance in the field of intellectual disability as a process of making quality adaptations involved in raising a child with intellectual disability. The present study investigated the variations in resilience with respect to locus of control orientations of 57 parents. They were assessed using Connor Davidson Resilience Scale and Internal-External Scale. Results indicated that parental locus of control orientations significantly influenced their resilience. The internal locus of control acted as a protective mechanism of resilience. The findings have specific relevance in nurturing a community of resilient parents so that they will be active participants in the rehabilitation process of their children. [ABSTRACT FROM AUTHOR]

Individuals with intellectual and developmental disabilities (IDD) experience much higher rates of forced sexual interactions than non-disabled individuals, with incidence ranges from 44% in children (Ballan in J Autism Dev Disord 42:676-684, 2012; Kvam in Child Abuse Negl 24:1073-1084, 2000; van der Put et al. in J Intellect Disabil Res 58:979-991, 2014) to 83% in adults (Johnson and Sigler in J Fam Violence 15:95-108, 2000). These incidents may be perpetrated by others with disabilities (van der Put et al. in J Intellect Disabil Res 58:979-991, 2014) or, more frequently, by caregivers or others known to the individual. This may be the case because individuals with intellectual and developmental disabilities (IDD)—especially those with very low IQs—tend to receive little by way of sex education. This study assessed parental beliefs of sexuality education needs of children with and without disabilities through an online survey comprised of questions about the parents, their child, and their attitudes about their child’s sexuality. Results showed that parents of children with IDD are less likely to believe their children will have consensual or non-consensual sex before age 18 than parents of children without IDD, but favor sexuality education for their children, with parents preferring to provide it themselves, with the assistance of or through preparation by workshop with a professional. These finding are discussed in the context of implications for intervention and increasing options for sexuality education for learners with IDD. [ABSTRACT FROM AUTHOR]

PRR12 encodes a proline-rich protein nuclear factor suspected to be involved in neural development. Its nuclear expression in fetal brains and in the vision system supports its role in brain and eye development more specifically. However, its function and potential role in human disease has not been determined. Recently, a de novo t(10;19) (q22.3;q13.33) translocation disrupting the PRR12 gene was detected in a girl with intellectual disability and neuropsychiatric alterations. Here we report on three unrelated patients with heterozygous de novo apparent loss-of-function mutations in PRR12 detected by clinical whole exome sequencing: c.1918G>T (p.Glu640*), c.4502_4505delTGCC (p.Leu1501Argfs*146) and c.903_909dup (p.Pro304Thrfs*46). All three patients had global developmental delay, intellectual disability, eye and vision abnormalities, dysmorphic features, and neuropsychiatric problems. Eye abnormalities were consistent among the three patients and consisted of stellate iris pattern and iris coloboma. Additional variable clinical features included hypotonia, skeletal abnormalities, sleeping problems, and behavioral issues such as autism and anxiety. In summary, we propose that haploinsufficiency of PRR12 is associated with this novel multisystem neurodevelopmental disorder. [ABSTRACT FROM AUTHOR]

The study assessed the diagnostic validity of the diagnostic behavioral assessment for autism spectrum disorders-revised (DiBAS-R; 19-item screening scale based on ratings by caregivers) in a clinical sample of 381 adults with ID. Analysis revealed a sensitivity of 0.82 and a specificity of 0.67 in the overall sample (70.3% agreement). Sensitivity (0.79) and specificity (0.84) were balanced in individuals with mild to moderate ID (83.3% agreement), while specificity was lower in individuals with severe to profound ID (sensitivity: 0.83, specificity: 0.34, 51% agreement). The level of ID as well as its interaction with ASD explained a significant proportion of the variance in the DiBAS-R scores. The DiBAS-R is an adequate screening tool, especially in individuals with mild to moderate ID. [ABSTRACT FROM AUTHOR]

This study describes the adaptation of the autism diagnostic observation schedule (ADOS-2) to assess autism spectrum disorder (ASD) in adults with intellectual disability (ID) and hearing loss who communicate primarily visually. This adapted ADOS-2 was applied to residents of specialized therapeutic living communities (n = 56). The internal consistency of the adapted ADOS-2 was excellent for the Social Affect of modules 2 and 3 and acceptable for Restricted and Repetitive Behaviors subscale of module 2, but poor for module 3. Interrater reliability was comparable to standard ADOS-2 modules 1–3. Results suggest that autism symptoms of deaf adults with ID can be reliably identified by an adapted ADOS-2, provided adequate expertise in deafness, ID, ASD and proficiency in signed language by the administrator. [ABSTRACT FROM AUTHOR]

Carers of adults on the autism spectrum often experience high levels of stress, worry, and caregiver burden. There are few studies identifying the predictors of carer mental well-being and none have been conducted in Australia. Data from the Autism Cooperative Research Centre for Living with Autism's Australian Longitudinal Study of Autism in Adulthood was used to test the conceptual model by Sonido et al. (Rev J Autism Dev Disord, 2019, https://doi.org/10.1007/s40489-019-00177-8) by (a) identifying the predictors of mental well-being for carers of adults on the spectrum, (b) using model selection to determine which predictors contribute to the model of best fit, and (c) testing for mediating relationships between the predictors. Several predictors were directly associated with carer psychological quality of life, including carer age, care recipient intellectual disability, and carer intolerance of uncertainty. Model selection strongly supported the inclusion of most clusters from the conceptual model. Some mediating relationships were found, such as care recipient depressive behaviours mediating the relationships between caregiver burden and psychological quality of life. Future studies of the conceptual model will improve understanding of the predictors of carer mental well-being and enable tailored interventions to improve the psychological health of carers of adults on the autism spectrum. [ABSTRACT FROM AUTHOR]

This systematic review analyzes the differential use of gestures in learning by children with intellectual disability (ID) compared to typically developing ones (TD). Eleven studies published between 2000 and 2020 fulfilled the inclusion criteria (N = 364 participants). The results identify three key elements: (1) Children with ID accompany their spoken language with more gestures than TD children; (2) Specifically, they produce more iconic gestures that provide access to the conceptualization process and understanding in students with ID; (3) Children with ID rely on gesture more than TD children to carry meaning (i.e., produce unimodal gestural utterances without accompanying speech). Possible implications for teaching and guidelines for future research are proposed. [ABSTRACT FROM AUTHOR]

This study was the first to investigate the prospective effects of failure mindsets on implicit theories of intelligence (ITI), whose profound effects on learning, motivation, and academic achievement have found increasing support. Participants were 240 Chinese university students (180 females, Mage = 19.13) who completed a baseline and a 1-year follow-up survey. The cross-lagged panel model supported the study's hypothesis that students' perception of their parents' view of failure as debilitating at baseline predicted their own failure-is-debilitating mindset and entity theory of intelligence at follow-up. However, students' failure-is-debilitating mindset at baseline did not predict their entity theory of intelligence at follow-up. A reciprocal relationship was found between students' perception of their parents' failure-is-debilitating mindset and their entity theory of intelligence. We recommend programs be implemented to educate parents of the value of failure and how their conveying positive views of failure can be constructive to students' trajectory of learning and intellectual growth. [ABSTRACT FROM AUTHOR]

This study assessed the potential short-term effects of COVID-19 stay-at-home restrictions on ratings of ASD and comorbid symptoms severity and adaptive functioning of 69 youth, ages 8–16 years with ASD without intellectual disability. Parent/caregiver ratings were being collected in fall and spring over approximately two years when the restrictions were imposed four months prior to the final data collection point. Results indicated no significant changes in parent/caregiver ratings of ASD symptom severity, comorbid symptoms severity, social skills, or adaptive behaviors following the stay-at-home restrictions and little variability across the four data collection points. Although findings suggested minimal short-term effects on these symptoms and adaptive skills, ongoing monitoring is needed to assess longer-term impacts. [ABSTRACT FROM AUTHOR]

Community integration is preferred by people with intellectual and developmental disabilities; community integration is also associated with positive outcomes. Yet, many people with intellectual and developmental disabilities, especially with higher support needs, remain isolated. This exploratory study examined the relationship between community integration, significant support needs, and emergency department utilization of people with intellectual and developmental disabilities (n = 251) by analyzing secondary Personal Outcome Measures® interview data. We found an interaction between community integration and comprehensive behavior support needs, wherein people with intellectual and developmental disabilities with comprehensive behavior support needs who participated in the life of the community had 78% fewer emergency department visits than those people with comprehensive behavior support needs who did not participate in the community. Not only is community integration preferred by people with intellectual and developmental disabilities, our research suggests it can also produce improved health outcomes for those with comprehensive behavior support needs. [ABSTRACT FROM AUTHOR]

Background: A strong therapeutic alliance or working relationship is essential for effective face-to-face family-based psychotherapy. However, little is known about the use of VC on alliance in family-based therapy. The recent COVID-19 pandemic led to a national lockdown during which most family-based therapy transferred to VC. Objective: The current study analyzed the development and strength of alliance prior and during lockdown for multi-stressed families participating in Multisystemic Therapy (MST). Method: Alliance with the therapist was reported monthly by 846 caregivers (81% female). Using latent growth curve models (longitudinal approach), the development of alliance was estimated for families participating in MST prior to the lockdown, transferring to VC early in treatment or late in treatment. Using regression analyses (cross-sectional approach), lockdown (yes/no) was included as predictor of alliance. In these analyses, type of family (regular; intellectual disability; concerns regarding child abuse or neglect) and gender of caregiver were included as moderators. Results: Both analytical approaches showed that alliance was not affected by VC, except for families with concerns of child abuse, who reported lower alliances during lockdown. However, these results where no longer significant when controlling for multiple testing. Conclusions: Strong alliances can be developed and maintained during family-based VC sessions with multi-stressed families. However, for some subgroups, such as families with concerns of child abuse, VC might not be suitable or sufficient. Future research needs to investigate the potential and limitations of using VC with families. [ABSTRACT FROM AUTHOR]

The present study examined which aspects of the child's behavior and clinical profile accounted for three dimensions of parenting stress: related to parenting roles, to interactions with the child, and to the child. Measures of adaptive behavior, intellectual functioning, autism symptom severity, and challenging behavior and emotional difficulties were examined as predictors of parenting stress in 157 mothers of children recently diagnosed with autism. Children's emotional problems and aggressive behavior were most predictive of parenting distress, whereas autism symptoms along with emotional problems and aggressive behavior, respectively, were linked to stress pertaining to interactions and to the child. These findings underscore the need for comprehensive and complementary interventions that focus on children's behavior and symptoms but also on parent adjustment. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic continues to have a detrimental impact on individuals with disabilities. Data from FAIR Health's FH® NPIC (National Private Insurance Claims) database, one of the nation's largest databases of private insurance claim records, were analyzed to understand the experiences of individuals with ASD in the COVID-19 pandemic. Multivariate logistic regression models revealed that individuals with ASD + ID were nine times more likely to be hospitalized following COVID-19 infection (OR = 9.3; 95% CI: 6.9–12.5) and were nearly six times more likely to have an elevated length of hospital stay (OR = 5.9; 95% CI: 3.5–10.1) compared to those without ASD + ID. These findings point to the need for prioritizing access to vaccines to prevent COVID-19 infection and morbidities. This is the first study to illustrate a higher likelihood of hospitalization and elevated length of hospital stay from COVID-19 in individuals with ASD and other comorbidities. [ABSTRACT FROM AUTHOR]

There is a growing recognition that people with disabilities have the same sexual needs and rights as people without disabilities. However, less attention is paid to the sexuality of people diagnosed with intellectual disabilities. This narrative review summarises what is currently known about the level of sexual health knowledge of people with intellectual disabilities. A literature review was conducted of the published literature using Google Scholar, PubMed, PsychInfo, EBSCOhost and Science Direct. Forty-eight articles were identified that addressed the question about the level of sexual health knowledge of people with intellectual disabilities. Overall, studies demonstrate that people with intellectual disabilities are highly variable in levels of sexual knowledge, but on average have a range of deficits in knowledge compared to non-disabled individuals. More tailored education and support in accessing formal and informal sources of information are needed. [ABSTRACT FROM AUTHOR]

Purpose: People with intellectual disability (PWID) appear more likely to be victims and perpetrators of crime. However, extant evidence pertaining to these risks is limited by methodological weaknesses and the absence of consistent operational definitions. This research aimed to estimate the prevalence of criminal histories and victimisation using a large, well-defined sample of PWID.Methods: A case-linkage study was conducted comprising 2220 PWID registered with disability services in Victoria, Australia, whose personal details were linked with a state-wide police database. Criminal charges and reports of victimisation were compared to a non-disabled community comparison sample (n = 2085).Results: PWID were at increased risk of having a history of criminal charges, particularly for violent and sexual offences. Although the non-disabled comparison group had a greater risk of criminal victimisation overall, PWID had a greatly increased risk of sexual and violent crime victimisation.Conclusions: PWID are at increased risk of victimisation and perpetration of violent and sexual crimes. Risk of sex offending and victimisation is particularly elevated, and signalling the need for specialised interventions to prevent offending and to ensure victims is assisted with access to justice, support, and treatment. [ABSTRACT FROM AUTHOR]

There is a lack of research exploring the use of mindfulness groups for people with intellectual and developmental disabilities in a community setting. This paper explores the experiences of people with intellectual disabilities and carers who participated in Introduction to Mindfulness workshops. The mindfulness workshops consisted of an introduction to mindfulness and a body scan meditation. Participants were given a leaflet about mindfulness and an audio CD of mindfulness exercises. A questionnaire survey was conducted of people who attended the mindfulness workshops and qualitative interviews were carried out with six people with intellectual disabilities (three of whom were supported by paid or family carers). Feedback on the workshops was generally positive. Workshop participants valued the opportunity to talk to other people about their experiences and found the workshops, and in particular the body scan, very relaxing. Three of the people with intellectual disabilities who were interviewed had listened to the audio recording since the workshops and two of these had found it useful in aiding them to cope with phobias, stress and discrimination. Participants wanted further mindfulness sessions and felt that other people with intellectual disabilities could benefit from mindfulness training. The interviews revealed that people with intellectual disabilities may have very stressful lives. Mindfulness could be a useful way of helping people to manage such stress. The mindfulness workshops were clearly acceptable to people with intellectual disabilities, and further work is needed to develop and evaluate a group mindfulness program that is accessible to people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

This article aimed to review outcome measure instruments of self-reported Quality of Life (QOL) in people with Intellectual Disability (ID). Instruments were identified from five electronic databases (CINAHL, Medline, PsychINFO, Cochrane Library, and ERIC) and hand-searching with the following inclusion criteria: (i) the paper was to evaluate the measurement properties of QOL; (ii) the measurement measured dimensions/indicators that align with the QOL construct; (iii) the target participants should include an ID population; (iv) the measurement should include self-reported QOL ratings from the ID population; and (v) the study was published in peer-reviewed English language literature. Nine QOL instruments met the inclusion criteria. The evidence of reliability and validity of the included instruments varied. None of the instruments reported for responsiveness. The Choice Questionnaire had the most evidence supporting its measurement properties while the Maryland Ask Me! Project had the least. Future studies are needed to further refine these instruments. [ABSTRACT FROM AUTHOR]

The article discusses a study which hypothesizes that people from South Asian backgrounds will have more negative attitudes than White Westerners towards all aspects of the sexuality of people with intellectual disabilities and more positive attitudes towards people with intellectual disabilities becoming parents. It suggests that South Asian and White Western communities have differences in their attitudes towards sexuality in people with intellectual disabilities.

Purpose: There is consensus that Quality of Life (QOL) should be obtained through self-reports from people with intellectual Disability (ID). Thus far, there have been no attempts to collect self-reported QOL from people who are deaf and have ID. Methods: Based on an established short measure for QOL (EUROHIS-QOL), an adapted easy-to-understand sign language interview was developed and applied in a population (n = 61) with severe-to-profound hearing loss and mild-to-profound ID. Self-reports were conducted at two time points (t1 and t2), 6 months apart. The Stark QOL, an established picture-based questionnaire, was also obtained at t2 and three Proxy ratings of QOL (from caregivers) were conducted for each participant at t1. Results: Self-reported QOL was successfully administered at both time points for 44 individuals with mild and moderate ID (IQ reference age between 3.3 and 11.8 years). The self-reports showed sufficient test–retest reliability and significant correlations with the Stark QOL. As anticipated, self-reported QOL was higher than proxy-reported QOL. Test–retest reliability and internal consistency were good for self-reported QOL. Conclusion: Reliable and valid self-reports of QOL can be obtained from deaf adults with mild-moderate ID using standard inventories adapted to the linguistic and cognitive level of these individuals. [ABSTRACT FROM AUTHOR]

This descriptive study aimed to determine the perspectives of nursing students regarding sexual development of children with intellectual disability. This study was conducted with 455 nursing students at the Faculty of Health Sciences in the Western Black Sea Region of Turkey over the period September–November 2020. Data were collected from the students by e-mail. The instruments used to collect the data were a "Personal Charateristics Form" and the "Perspectives on Sexual Development of Children with Intellectual Disability Questionnaire," which were prepared by the researchers. In this study, 55.4% of the students had previously received training on sexual development and health, and the source of education for 41.5% consisted of the courses taken in their undergraduate program. Of the students, 23.1% did not wish to communicate with children with intellectual disability or their parents about sexual development, 76.9% felt inadequate in their communication with children and parents about sexual development, 46.2% felt they could identify deviations in sexual development in children with intellectual disability, and 81.5% believed that children with intellectual disability were more vulnerable to sexual abuse. The viewpoints of 4th-year students about sexual development of children with intellectual disability were more positive. Sexual development education should be included in the nursing undergraduate curriculum from the first year of the program. [ABSTRACT FROM AUTHOR]

Purpose Work incentives benefits counseling (WIBC) can be a strong facilitator contributing to improved employment outcomes for individuals with intellectual disabilities (ID) by providing information about how income may affect disability benefits eligibility. The purpose of this study is to evaluate the effect of WIBC as a VR intervention to improve on employment outcomes and earnings of transition-age youth and young adults with ID who are Supplemental Security Income benefits recipients using a propensity score matching analysis approach. Propensity score matching using logistic regression analysis and the nearest neighbour method was conducted to equalize the treatment (received WIBC) and control groups (not received WIBC) on the six prominent demographic covariates. The treatment group had higher rates of employment, higher hourly wages than the control group, while the treatment group worked less hours per week than the control group. Methods Propensity score matching using logistic regression analysis and the nearest neighbour method was conducted to equalize the treatment (received WIBC) and control groups (not received WIBC) on the six prominent demographic covariates. Results The treatment group had higher rates of employment, higher hourly wages than the control group, while the treatment group worked less hours per week than the control group. Conclusions Findings of the present study can be used by policy makers, transition specialists, rehabilitation counselors, and other disability service providers to increase employment outcomes and earnings for individuals with ID through WIBC services. Future research and practice implications are provided. [ABSTRACT FROM AUTHOR]

Self-injurious behaviors (SIB) are elevated in autism spectrum disorder (ASD) and related genetic disorders, but the genetic and biological mechanisms that contribute to SIB in ASD are poorly understood. This study examined rates and predictors of SIB in 112 individuals with disruptive mutations to ASD-risk genes. Current SIB were reported in 30% of participants and associated with poorer cognitive and adaptive skills. History of severe abdominal pain predicted higher rates of SIB and SIB severity after controlling for age and adaptive behavior; individuals with a history of severe abdominal pain were eight times more likely to exhibit SIB than those with no history. Future research is needed to examine associations between genetic risk, pain, and SIB in this population. [ABSTRACT FROM AUTHOR]

Adults with intellectual and developmental disabilities (IDD) may engage in challenging behavior. These behaviors present challenges to support staff who often lack training in effective behavior management procedures. Behavioral skills training (BST) is an empirically supported method of staff training and has been used to teach support staff a number of intervention skills. The purpose of this study was to extend the literature on BST and to examine the effects of BST on staff implementation of functional communication training (FCT) for three adults with IDD using a non-concurrent multiple baseline design. Results indicated that with BST, staff fidelity increased over baseline levels. With the addition of individualized coaching, staff implementation reached mastery criteria. Improvements in staff implementation fidelity corresponded with decreases in participant challenging behavior and increases in appropriate communication. Findings suggest that BST with coaching may be an effective method to train staff to implement FCT with adults. [ABSTRACT FROM AUTHOR]

In Sweden sex education has been compulsory since 1955. However, access to sex education seems to be insufficient in schools with special education programs. Concerns about unwanted pregnancies, sexual abuse and sexual risk situations make personnel insecure about how to best deal with the subject. A largely heteronormative perspective of sex education renders young gay people with ID an invisible group. Stereotyped gender norms where girls are supposed to be oriented towards love and relationships and boys towards sexuality make it more difficult for young people with ID to find a more subtle way to act. The aim of this study is to strengthen sexual health among young people with ID, and to develop a knowledge base culled from their own experiences that can help teachers in special schools to supply sufficient sex education. What are the experiences of sex education in young people with ID aged 16-21? In what way, and by whom, should sex education be supplied? What themes do the young people with ID consider important? Qualitative research interviews with 16 young females (9) and males (7) with ID aged 16-21 years have been conducted. Guiding the analyses is an interactionist perspective on sexuality. Results show that a restrictive script is geared toward informants with ID, focusing on sexual risks instead of challenging a discourse of pleasure, desire and intimacy. The study also shows that using critical pedagogy can help personnel develop a professional and adequate teaching model for sex education at schools for adolescents with ID. [ABSTRACT FROM AUTHOR]

This study examines the psychometric properties of the Autism Diagnostic Interview-Revised (ADI-R) in the context of DSM-5 in a sample of Chinese children. Using re-mapped ADI-R items and algorithms matched to DSM-5 criteria, and administering to children with autism spectrum disorder (ASD) with and without intellectual disability, attention-deficit hyperactivity disorder, and typically developing, it evidenced high sensitivity and specificity. However, similar to DSM-IV algorithm, the DSM-5 algorithms were better at classifying ASD among children with intellectual disability than among those without intellectual disability. With the DSM-5's recognition of the spectrum nature of ASD, the performance of the ADI-R can be improved by having finer gradations in the ADI-R scoring and adding more items on the restricted and repetitve behavior domain. [ABSTRACT FROM AUTHOR]

Individuals with developmental disabilities (DD) are twice as likely to have obesity than non-disabled individuals. Replacing the consumption of sugar sweetened beverages (SSBs) with water has many health benefits, including weight reduction. In this study, a token reinforcement system was implemented to increase water consumption and decrease the consumption of SSBs with 14 adult participants with DD living in a community-based independent supported living (ISL) center. Token reinforcement reduced the consumption of SSBs, with associated reductions in calorie consumption and body weight. Findings are especially important for treatment settings where resources for individualized meal planning and staffing to support comprehensive behavioral interventions may be limited. [ABSTRACT FROM AUTHOR]

One-hundred twenty-four pre-school children referred for assessment to a neuropsychiatric team were included in this study of the Autism Behavior Checklist (ABC), ESSENCE-Q, and Conners Abbreviated Parent-Teacher Rating Scale (CAPRS). All three questionnaires showed a good correlation towards severity of symptoms in ASD. The ABC questionnaire was, as has been shown in earlier research less accurate in identifying individuals with ASD having an IQ within the normal range. However the ESSENCE-Q, and the CAPRS proved to identify children with difficulties needing further assessment regardless of intellectual ability. The CAPRS showed a good correlation to severity in ASD indicating difficulties in the regulation of activity and behavior likely to be connected to ASD in pre-school children. [ABSTRACT FROM AUTHOR]

Mutations in RAB39B gene have been linked to intellectual deficiency associated with parkinsonism, also referred as to Waisman syndrome. As it appears to be a very rare cause of Parkinson Disease (PD), with only few cases described in the literature, the typical clinical and radiological features are yet to be determined. In this article, we report and illustrate multimodal brain imaging by computed tomography, magnetic resonance imaging, transcranial ultrasound (US), dopamine transporter single photon emission computed tomography and [18F]-fluorodeoxyglucose positron emission tomography ([18F]FDG-PET) in a 37-year-old man with PD features and mild mental retardation harboring a new RAB39B mutation. We then propose a comparison with data previously published regarding neuroimaging in this condition and present a summary of previous imaging reports. If our patient's results partly support previously described radiological features, they also highlight potential new characteristics of this rare syndrome. To the best of our knowledge, [18F]FDG-PET and transcranial US have never been reported before in this condition. This is therefore the first multimodal brain imaging description of a patient presenting RAB39B mutation. [ABSTRACT FROM AUTHOR]

Children with autism have a significantly lower quality of life compared with their neurotypical peers. While multiple studies have quantified the impact of autism on health-related quality of life (HRQoL) through standardized surveys such as the PedsQL, none have specifically investigated the impact of syndromic autism. Here we evaluate HRQoL in children diagnosed with three genetic disorders that strongly predispose to syndromic autism: Phelan-McDermid syndrome (PMD), Rett syndrome (RTT), and SYNGAP1-related intellectual disability (SYNGAP1-ID). We find the most severely impacted dimension is physical functioning. Strikingly, syndromic autism results in worse quality of life than other chronic disorders including idiopathic autism. This study demonstrates the utility of caregiver surveys in prioritizing phenotypes, which may be targeted as clinical endpoints for genetically defined ASDs. [ABSTRACT FROM AUTHOR]

This study explored the association between intelligence and motor skills in children with ASD after controlling for Attention Deficit and Hyperactivity Disorder (ADHD) and the associations between motor impairment and intellectual disability (ID) in this population. In total, 120 children with ASD (3–16 years; 81.7% boys) completed a standardized intelligence test, the Movement Assessment Battery for Children and Beery–Buktenica Developmental Test of Visual-Motor Integration. Variance in performance IQ was associated with 20.8% of the variance in motor skills while significant associations were found between comorbid ID and motor impairment (ɸ = 0.304). Manual Dexterity and Balance are moderately influenced by performance IQ in children with ASD. Furthermore, presence of ID is also moderately associated with motor impairment in this population. [ABSTRACT FROM AUTHOR]

Black children with autism are diagnosed at an older age. Whether or not late detection is paralleled by differing clinical presentation is not known. We evaluated symptom profiles of 245 Black and 488 sex- and age-matched White non-Hispanic participants (82.8% male; mean age: 4.2 years) referred for ASD diagnosis. Both groups showed similar overall levels of autistic symptoms. Black children had significantly but slightly lower scores on cognitive tests and on the Vineland communication domain than White children. Groups were comparable on internalizing and externalizing co-occurring problems. Given the largely similar clinical profiles, clinical differences in initial presentation may not be a primary reason for Black/White disparities in diagnostic and services use. Limitations of a cross-sectional referred sample are acknowledged. [ABSTRACT FROM AUTHOR]

Establishing evidence- and research-based practices relies upon research synthesis of individual studies in reviews and meta analyses. Further summarizing scientific evidence about a specific topic by synthesizing reviews is an area of need to determine practices that have a strong evidence base and to identify areas of methodological weakness and gaps in the literature. A mega-review of literature reviews, systematic reviews, and meta-analyses on interventions using aided augmentative and alternative communication (AAC) interventions for children with intellectual and developmental disabilities from 2000 to mid-2020 was conducted. Participant and interventionist demographics, interventions, settings, outcomes, and recommendations of each review were reported and summarized. A MeaSurement Tool to Assess systematic Reviews Revised (AMSTAR 2; Shea et al., 2017) was used to examine the methodological rigor of 84 included reviews. Over the past 20 years, published reviews have increased slightly in methodological rigor but demonstrate a number of methodological weaknesses that detract from the strength of evidence for AAC interventions with this population. Suggestions for improving the methodological rigor of literature reviews and areas for future research specific to AAC interventions are discussed. [ABSTRACT FROM AUTHOR]

The skills and social impairments of a total population of children with severe intellectual disabilities and/or autism from Camberwell, South London (Wing and Gould, 1978 and 1979), were assessed using the Handicaps, Behaviours and Skills schedule, and they were reassessed when they were adolescents and young adults (Shah, 1986). Changes in social impairment over time are presented here. As Shah (1986) had found with a smaller sample, social impairment remained relatively stable over time: on a simple “socially impaired” versus “sociable” dichotomous grouping, 93% did not change social group. Within the socially impaired group, there was a significant increase in impairment over time (i.e., people who were passive at Time 1, were aloof at Time 2). Implications of these results and predictions for a further follow-up study are discussed. [ABSTRACT FROM AUTHOR]

Consent determination is a common practice that has been championed as a logical approach (Lyden in Sex Disabil 25(1):3–20, 2007) to the sexual activity of individuals with intellectual and/or developmental disabilities. These practices are paternalistic and ineffectual, and need to be replaced with viable alternatives, such as sex-education provision. In this piece, I deconstruct the logic of this practice utilizing the case of Ashley X, contemporary research findings, an analysis provided by Perlin and Lynch (Sexuality, disability, and the law: beyond the last frontier?, Palgrave Macmillan, London, 2016) and Deborah Stone's policy analysis framework (Stone in Policy paradox: the art of political decision making, 3rd edn, Norton, New York, 2012). I argue that prevention of sexual activity is not synonymous with protection from sexual harm—and, in fact, may paradoxically cause harm to this population. I dispute the notion that people without intellectual disabilities are more equipped to make sex-related decisions for this population. Additionally, the notion of consent in this population is treated as flexible, and primarily bends to facilitate the needs of people without disabilities. I conclude with several recommendations, including a request for protective civil rights legislation to defend the sexual and relationship rights of people with intellectual and developmental disabilities. [ABSTRACT FROM AUTHOR]

Objectives: Mindfulness-based programs have been delivered to people with intellectual disabilities (ID) and aggressive behaviour with some success. The current study is part of a wider feasibility study, which aimed to test the adaptation of the Soles of the Feet (SoF) meditation practice to a six-session, one-to-one intervention delivered within the UK National Health Service. It was designed for adults with ID to help reduce their aggressive behaviour. Methods: Eighteen stakeholders were interviewed from three groups: (1) people with ID who took part in the intervention, (2) their supporters, and (3) therapists who delivered the intervention. Thematic analysis was used to analyse the data. Results: The intervention had high acceptability among participants, although they reported mixed outcomes, these outcomes aligned closely with reports on effectiveness from supporters and therapists. Some people with ID and their supporters reported positive changes, such as reduced aggression, increased sociability, and higher quality of life. Some participants reported no change. Conclusions: Four participants and their supporters reported clear benefits from the SoF intervention. For the three that did not report benefits, this appeared to be related to whether the person with ID understood the intervention and/or were motivated to reduce their aggressive behaviour. There was also evidence of supporters needing more direct instruction on how to facilitate the SoF intervention with the person they care for. Suggestions for future research are made, and clinical implications explored. [ABSTRACT FROM AUTHOR]

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Postsecondary education (PSE) programs serving individuals with intellectual disabilities (ID) aim to improve life outcomes by increasing skills in three key areas: academics, independent living, and employment. To ensure that PSE programs are successful, ongoing evaluations are necessary. It is particularly important to gather parental perspectives given the integral role they play regarding decision making for students with ID. This qualitative study analyzed data from 58 interviews conducted with parents whose child was enrolled in a PSE program nested within a large public university. Thematic analysis with a deductive approach was the established theoretical model used to guide the analysis. Themes related to capability, opportunity, motivation, and behavior are presented, and future recommendations for PSE programs are discussed. [ABSTRACT FROM AUTHOR]

Persons with profound intellectual and multiple disabilities (PIMD) cannot speak about their Quality of Life (QoL), which makes it necessary to involve others. In current approaches, these 'others' are seen as assessors trying to describe QoL as objectively as possible, which involves a reduction of their experiences, through which they develop knowledge on the QoL of the person with PIMD. The objective of this paper is to give caregivers' knowledge on the QoL of a person with PIMD a theoretical basis that values these experiences. We will argue that caregivers should be seen as witnesses, not assessors, and their statements on QoL as testimonies, not assessments. Audiences judge the trustworthiness of these witnesses intersubjectively, which implies a relationship characterized by trust and suspicion. Trust supports the witness to tell in her own words about the QoL of the person with PIMD; it demands receptivity, indicating that both the witness and the audience are willing to reconsider their perspective on QoL. Suspicion is necessary too, which helps the witness to critically approach her own interpretations and supports her to create more trustworthy testimonies. We conclude that the concept of witnessing helps to acknowledge caregivers' experiential knowledge of QoL of a person with PIMD, which may also apply to other persons who cannot speak about their own QoL. We hope that our study will empower caregivers to give testimonies on QoL of a person with PIMD, which is crucial when complex decisions about the life of this person have to be made. [ABSTRACT FROM AUTHOR]

In summary, literature shows that people with intellectual disability tend to have less and later sexual experience than persons without disability. They have limited opportunities to meet potential partners but the same human need for intimate romantic relationships. The sample included 42 people with mild to moderate intellectual disability between 14 and 25 years. Face-to-face interviews were conducted in schools and sheltered workshops. The interview guide was translated in easy to read language. The interviews were evaluated with the qualitative content analysis. Most of the respondents have had a relationship and met their partners in professional and school context. Their contacts are reduced to the encounters there. One third have had intercourse experience. Difficulty existed in the search for an undisturbed place and partner selection. A large part of women take hormonal long-acting reversible contraception. The sexual lives of young people with intellectual disability are still partly restricted due to a lack of access. More inclusive activities should be offered and provided with an appropriate retreat for togetherness. Applicable graphic informational material and sex education on sexuality, relationship and contraception is required in easy language. [ABSTRACT FROM AUTHOR]

The transition from adolescence to adulthood may be a challenging period for all young people, yet, for youth with autistic spectrum disorder (ASD) it may present some additional challenges. Developing a more coherent sense of the self, defining one's values and having a sexual awakening are all important processes for the passage from youth to an adult life. People with ASD have difficulties in the aforementioned areas and also face additional risks for sexual exploitation or even abuse. Those challenges underline the importance of sexual education for individuals with ASD. The aim of this case study is to systematically investigate the effectiveness of a behavior analytic intervention in helping an adolescent with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) improve in the area of sexual behavior and at the same time minimize his inappropriate behavior. Specifically: (a) to develop a verbal repertoire pertaining to adolescence and sexuality, (b) to improve personal hygiene skills, (c) to develop or improve self-satisfaction related to sexual expression, (d) to decrease inappropriate behavior pertaining to sexuality, and (e) to train the father to undertake a part of the intervention that would be unethical for the researcher to contact—monitor the participant's masturbation practices. Using a multiple-baseline-across-response-categories experimental design, it was demonstrated that the majority of the aforementioned goals were attained, yet, one goal—the decrease of inappropriate behavior—was only temporarily reached. [ABSTRACT FROM AUTHOR]

Design: A systematic review. Aim: Assess the effectiveness of manual toothbrushes (MTB) and powered toothbrushes (PTB) for people with physical or intellectual disabilities. Data sources and study selection: The following data sources (MEDLINE-PubMed, Cochrane-CENTRAL and EMBASE) were searched from the date of creation to February 2022 for papers which met the inclusion criteria. There were no language limitations set. The included studies were then hand-searched for relevant studies to be included. Data extraction and synthesis: Two reviewers screened the studies from the searches using Rayyan web application (Artificial-Intelligence search engine). Studies which met the inclusion criteria were selected. The studies were independently screened for the inclusion/exclusion criteria. Disagreement was resolved by discussion and consensus, or by a third party. Studies were then classified as low/moderate/high risk of bias. Analysis was performed on four subgroups; individual performing the brushing – (1) caregiver or (2) participant, main disability of the participant – (3) physical or (4) intellectual disability. Due to insufficient numerical data, a descriptive analysis was completed in place of the planned meta-analysis. Results: In total, 16 publications were included within the results. There was no significant difference between manual or powered toothbrushing in both disability groups for the removal of plaque or gingival health. This applied to both self-brushing and caregiver brushing. Conclusions: There is no significant difference between powered and manual toothbrushes for effective oral hygiene maintence for people with physical or intellectual disabilities. [ABSTRACT FROM AUTHOR]

This paper presents a systematic review of the evidence on the effectiveness of mindfulness for people with intellectual disabilities. Primary studies published in the English language between 1980 and 2012 were identified from electronic databases, experts and citation tracking. Eleven relevant studies evaluating mindfulness training and practice were identified: seven studies with people with intellectual disabilities, two studies with staff members or teams and two studies with parents. The studies found improvements in aggression and sexual arousal for people with intellectual disabilities after mindfulness training. Training staff led to benefits for people with intellectual disabilities, decreased use of physical restraint for aggressive behaviour and increased job satisfaction. Training parents led to improved parental satisfaction and well-being and improved parent-child interactions. The reported positive findings suggest that service providers, people with intellectual disabilities and their families may want to consider mindfulness approaches. However, the findings have to be interpreted with caution due to methodological weaknesses identified in the studies. Further high-quality independent research is needed before the reported improvements can be more confidently attributed to mindfulness. [ABSTRACT FROM AUTHOR]