Journal of Applied Research in Intellectual Disabilities

To describe the rates of anti-social behaviour (ASB) among adolescents with/without mild/moderate intellectual disability (MMID). To estimate whether any differences could be attributable to differences in exposure to extraneous risk factors. Secondary analysis of the Longitudinal Study of Young People in England. Participants with MMID were identified through data linkage with educational records. Parents of children with MMID were more likely to report police contact, children with MMID were more likely to self-report fighting/public disturbance, shoplifting and graffiti. When controlling for differences in exposure to extraneous risk factors, MMID was associated with increased rates of police contact and self-reported graffiti, no difference in self-reported shoplifting, reduced rates of self-reported fighting/public disturbance and vandalism. Differences in the rates of exposure to extraneous risk factors play an important role in accounting for the differences in the prevalence of self-reported ASB among adolescents with and without MMID.

Family Quality of Life (FQOL) is an important construct in the Intellectual Disabilities field. Several measures exist, including one developed by an international group, the Family Quality of Life Survey-2006 (FQOLS-2006; Brown et al.2006). However, the psychometric properties of this measure have yet to be fully investigated. This study was designed to examine its concurrent validity compared to the well established Beach Center FQOL Scale. In a sample of 62 families of school-aged Canadian children with intellectual disability and/or autism spectrum disorder, both the FQOLS-2006 and the Beach Center FQOL scale were administered and the scores compared. The total scores of the two measures were strongly correlated, as were particular subscales that would be expected to correlate. However, there were several surprising correlations as well. The FQOLS-2006 shows good concurrent validity relative to the Beach Center scale, although some domains show unexpected relationships, suggesting further research is needed. © 2015 John Wiley & Sons Ltd.

A population sample of people with Down Syndrome, repeatedly studied since infancy, has now been followed up at the age of 45 years. The paper is intended to give an overview of their abilities, as represented by the results of psychological tests, over their life span to date. As at all previous occasions from age 30 onwards, intelligence, language, academic abilities and memory were tested, and self-help skills assessed. Mean IQs, both non-verbal and verbal, changed little from age 21 to 45. Disregarding the scores of two women severely affected by dementia, the remainder of the cohort lost over the whole period an average of less than one point in non-verbal IQ and gained over five months in verbal age. Scores on memory tests by some of those not yet diagnosed with AD declined, in some cases significantly, suggesting that other members of the cohort too may be showing the early signs of the disease. While most of the cohort show few indications of decline in ability, a number now are or may be affected by AD, and this may require closer monitoring in the future.

Background This investigation of children with Angelman syndrome (AS) examined reported uses of electronic augmentative and alternative communication (AAC) devices (i.e. VOCAs), including speech generating devices, in relation to other aided and unaided methods of communication. Materials and MethodA total of 122 parents of children with AS, mostly from the USA self-administered a survey over the Internet. Qualitative methods based primarily on thematic analysis were used to organize and examine data. ResultsChildren relied heavily on unaided methods of communication such as natural gestures, regardless of their experiences with electronic communication devices. Parents cited various reasons for children's acceptance or rejection of their most advanced devices. DiscussionClinical implications are discussed in relation to children's needs for multimodal methods of communication, including accurately matching children's capabilities to AAC device characteristics. Practitioners are encouraged to consider reasons that parents cited for children's acceptance versus rejection of devices when implementing AAC programs.

Background: Applied behaviour analysis (ABA) therapists typically work one-to-one with children with autism for extended periods of time, which often leads to high levels of job-related stress, lower levels of job satisfaction, increased frequency of occupational 'burnout' and higher than average job turnover (Journal of Autism Development, 39, 2009 and 42). This is particularly unfortunate, in that these vulnerable clients need stability and consistency in care, both of which are empirically related to clinical outcomes (Journal of Autism Development, 39, 2009 and 42). It is reasonable to assume that some individuals, by virtue of their personal characteristics, are better suited to this type of work than are others. Method: The purpose of the this study was to investigate associations between personality traits, using the five-factor model of personality, and key job-related variables, including burnout and job satisfaction, in a sample of therapists (n = 113) who work one-to-one with individuals diagnosed with autism. Results: Significant correlations were found between Neuroticism and all three subscales of burnout (Exhaustion, Cynicism and Professional Efficacy). Extraversion and Conscientiousness were significantly negatively correlated with Cynicism and positively correlated with Professional Efficacy. Agreeableness was positively associated with Professional Efficacy. Job satisfaction was correlated positively with Extraversion and negatively with Neuroticism. Level of perceived personal and professional support partially mediated the effect of personality traits on job satisfaction. Conclusions: These results may help to identify job applicants who are dispositionally less suited to this type of work, as well as currently employed therapists who are in need of support or intervention.

People with intellectual disabilities (ID) are as likely as the general population to find themselves in the situation of having to identify and/or describe a perpetrator's face to the police. However, limited verbal and memory abilities in people with ID might prevent them to engage in standard police procedures. Two experiments examined face recognition and description abilities in people with mild intellectual disabilities (mID) and compared their performance with that of people without ID. Experiment 1 used three old/new face recognition tasks. Experiment 2 consisted of two face description tasks, during which participants had to verbally describe faces from memory and with the target in view. Participants with mID performed significantly poorer on both recognition and recall tasks than control participants. However, their group performance was better than chance and they showed variability in performance depending on the measures introduced. The practical implications of these findings in forensic settings are discussed.

Children without disabilities in out-of-home care have a higher risk of child sexual abuse [CSA (Euser et al. 2013)]. In this study, we examined the year prevalence of CSA in out-of-home care for children with a mild intellectual disability, and compared it with the prevalence in out-of-home care for non-disabled children and children in the general population. Professionals (N = 104) from out-of-home care facilities reported cases of CSA that occurred in 2010 for the children they worked with (N = 1650). In out-of-home care for children with a mild intellectual disability, 9.8 per 1000 children were victims of CSA. This prevalence was significantly higher than in regular out-of-home care and in the general population. Children with a mild intellectual disability in out-of-home care have an increased risk of CSA. Adequate education and support for both children and caregivers is necessary to recognize and prevent further sexual abuse. © 2015 John Wiley & Sons Ltd.

In other populations, the psychological impact of abuse has been conceptualized as Post Traumatic Stress Disorder (PTSD, DSM-IV, American Psychiatric Association (APA), 1994), but little is known about whether this is appropriate for adults with severe intellectual disabilities and very limited communication skills. An informant interview, based on the framework provided by PTSD, but supplemented with additional questions, was developed and was used to elicit the emotional, behavioural and physiological symptoms of alleged abuse in 18 people with intellectual disabilities at three time points: in the 3 months immediately prior to the alleged abuse (Time 1), in the 3 months immediately after the abuse (Time 2) and in the last 3 months prior to interview (Time 3). The reports of the family and carer informants indicated that, following their alleged abuse, the victims experienced marked increases in the frequency and severity of emotional, physiological and behavioural symptoms of psychological distress. Over time, there was some alleviation of these difficulties, but psychological functioning remained severely compromised. While the established PTSD framework is appropriate for examining the psychological impact of abuse, some amendments are required to enable clinicians to examine fully the distress of alleged victims with severe intellectual disabilities.

Helping staff serving clients with intellectual disability and challenging behaviour to cope with stress has implications for their own well-being and for the lives of those they support. This study examined staff members' views of stress and the effectiveness of a stress-management intervention. Effectiveness was assessed using written assignments regarding stress management, and changes in views presented were tested in a pre- and post-test control group design. In the first phase, a content analysis was conducted across groups, which revealed that participants expressed a broad variety of views about stress and coping mechanisms, with considerable individual differences. In the second phase, a more fine-grained quantitative analysis was conducted to assess training effectiveness. Results showed an increase in the proportion of coping strategies referred to by the experimental group post-training. This positive change remained at follow-up. The results of the content analysis and the outcome data have implications for staff training.

The aim of this study was to explore parents' experiences and strategies used when meeting the needs of all their children, including an adolescent with disabilities. A qualitative study design was employed. The study was conducted in two phases. (i) Secondary analysis of ecocultural interviews with 12 parent-carers of more than one child, including an adolescent (10-21 years) with intellectual disabilities. (ii) In-depth, semi-structured interviews with a sub-sample (n = 4) of parent-carers. Data was analysed using Strauss & Corbin's (1998) constant comparative method. Parents balanced their children's needs through a combination of strategies driven by their goals, beliefs and values. Parents found this very challenging. They were always conscious of the needs of all of their children, although they could not necessarily meet all their children's needs equally. Strategies that attended to all children simultaneously were preferred by most parents, but could not always be used. Parents, at times, used strategies that prioritized the needs of the adolescent with disabilities or siblings. Findings add to knowledge on what families of adolescents with disabilities do day to day and specifically reveal how these parents meet the needs of their children. Practitioners, together with disability and mainstream services and systems, need to recognize parents' goals, beliefs and values and the needs of the adolescent with disabilities. This will effectively aid the adolescent with disabilities, their siblings, parents and the whole of family life.

Background: Researchers acknowledge the importance of understanding how families of children with autism cope. Yet, little is known about the experiences of older parents of adults with autism. Materials and methods: In-depth interviews were conducted with 16 older parents of adults with autism. Narrative analysis was used to gain insights into their lived experiences. Results: Participants' narratives reflected the notion that much of their experience was a delicate balancing act as they attempted to manage their offspring's symptoms of autism whilst achieving a degree of fulfilment in their own lives. Parents did not believe that formal services had adequately supported their ability to provide care whilst meeting other needs within the family context. Conclusions: The findings have implications for services that attempt to support older parents' abilities to provide care, including the need for tailored intervention strategies that match each family's unique needs.

Background: Loss is a universal experience and death is perceived as the ultimate loss. The overarching aim of this research is to produce a qualitative, flexible, interactive, computerised tool to support the facilitation of emotional expressions around loss for people with intellectual disabilities. This paper explores the process of using Participatory Action Research (PAR) to develop this tool. Materials and methods: Participator Action Research provided the indicative framework for the process of developing a software tool that is likely to be used in practice. Results: People with intellectual disability worked alongside researchers to produce an accessible, flexible piece of software that can facilitate storytelling around loss and bereavement and promote spontaneous expression that can be shared with others. Conclusion: This tool has the capacity to enable individuals to capture experiences in a storyboard format; that can be stored; is easily retrievable; can be printed out; and could feasibly be personalised by the insertion of photographs.

Children with profound intellectual and multiple disabilities (PIMD) meet other children with PIMD in day care centres or schools. This study explores the peer-directed behaviours of children with PIMD, the peer interaction-influencing behaviour of the direct support workers and the children's positioning. Group activities for children with PIMD initiated by a direct support worker were video-recorded. The behaviour and positioning of the children and the behaviour of the direct support workers were coded. Limited peer-directed behaviour of the children with PIMD and peer interaction-influencing behaviour of the direct support workers are observed. Weak associations were found between the positioning or peer interaction-influencing behaviours and the behaviour of children with PIMD. Children with PIMD show social interest in each other during group activities. More knowledge is needed to create an environment which facilitates peer-directed behaviours of persons with PIMD. © 2015 John Wiley & Sons Ltd.

Background In adolescent with intellectual disability, the management of obesity is a crucial issue, yet also quite complex because of their particular perception of themselves. This study investigated the relationship between self-perception variables and morphological variables and their changes after a 9-month Adapted Physical Activity (APA) programme. Materials and Methods Twenty-three adolescents with intellectual disability responded to an adapted questionnaire, including the PSI-VSF-ID and a nine-drawing body silhouette scale. Anthropometric and body composition indicators were measured before and after the APA programme. ResultsThe main predictor of the adolescents' self-perceptions was the inclination towards positive illusory bias before the intervention; obesity awareness ranked second. Morphological measurements did not contribute in the same way to self-perceptions in the initial and final data. Conclusions This study confirms the interest of weight management programmes for adolescents with intellectual disability and points to the need to take positive illusory bias more fully into account in the study of self-perception.

Accurate measurement of adaptive behaviour is important in both clinical and research contexts. While several good clinical measures exist, as well as brief research measures for adults with intellectual disability, there is need for a brief and efficient measure for research with children and youth. We present preliminary psychometric properties of a new scale we developed for such purposes, the GO4KIDDS Brief Adaptive Behaviour Scale. A large sample (n = 432) of parents of youth (aged 3-20) with intellectual disability and/or ASD completed an online survey that included the new scale. A subsample of these parents (n = 204) also completed the Scales of Independent Behavior-Revised Short Form (Scales of Independent Behavior-Revised Comprehensive Manual, 1996 and Riverside Publishing). The new scale has good internal consistency and correlates strongly with the Scales of Independent Behavior, thus supporting its reliability and validity. Although we do not recommend its use for clinical purposes, the GO4KIDDS Brief Adaptive Behaviour Scale may be useful for survey research with parents of children and youth with developmental disabilities. © 2015 John Wiley & Sons Ltd.

Previous research has suggested a variety of possible relationships between the presence of symptoms of psychiatric disorder and challenging behaviours in people with intellectual disability. This study explores this relationship in a total population sample of adults with challenging behaviour. Over 800 service settings in a defined geographical area were screened to identify individuals with challenging behaviour. Detailed behavioural data, Psychiatric Assessment Schedule for Adults with a Developmental Disability (PAS-ADD) checklist and Adaptive Behaviour Scale (Part 1) scores were collected on 76% of the 930 adults identified. Just under 17% of participants reached threshold scores on one on more subscales of the PAS-ADD checklist. There was some evidence of increasing behavioural severity being associated with increasing psychiatric symptoms. There were no associations between specific forms of challenging behaviour and individual symptoms. The data would appear supportive of previous suggestions that it is unlikely that the majority of challenging behaviours in adults with intellectual disability are underpinned by psychiatric disorder.

Developmental and index offence variables have been implicated strongly in later criminal behaviour and service pathways and this paper investigated attention deficit hyperactivity disorder (ADHD) which, with conduct disorder, has emerged from previous studies on offenders. ADHD and conduct disorder are over-represented among criminal populations when compared to the general population. The present authors reviewed the extent to which ADHD affected the presentation of offenders with intellectual disability. Information related to index behaviour, history of problem behaviours, childhood adversity and psychiatric diagnoses was recorded in 477 referrals to forensic intellectual disability services. Comparisons were made between those with a previous diagnosis of ADHD and those without. The ADHD group showed higher proportions of physical aggression, substance use, previous problems including aggression, sexual offences and property offences, birth problems and abuse in childhood. Effect sizes were small. Attention deficit hyperactivity disorder with conduct disorder is associated with a greater degree and history of problematic behaviour in offenders with intellectual disability.

Interpersonal conflict is a source of stress and contributes to poor mental health in people with mild to moderate intellectual disabilities. Understanding the contexts in which conflict typically occurs can better equip services to help people with such difficulties. However, existing studies into the contexts of conflict have included participants with wide-ranging ages and may not reflect the experiences of young adults in particular. Twenty-six young adults (16-20 years) with intellectual disabilities and 20 non-disabled young adults completed a semi-structured interview about a recent experience of interpersonal conflict. Participants were asked to describe their beliefs and feelings about the event and their subsequent response. Participants with intellectual disabilities were more likely to encounter conflict with strangers or peers outside their friendship group and to describe incidents of aggression than non-disabled participants. They were also more likely to characterize the other person globally as 'bad' and to perceive the other's actions as being personally directed at them. Young women with intellectual disabilities were less likely to describe responding aggressively to incidents. Findings suggest that young adults with intellectual disabilities are often the target of overt aggression from those outside their inner social sphere, while their non-disabled peers are more likely to experience conflict with people close to them. Young adults with intellectual disabilities may also be more likely to feel victimized by interpersonal conflict. Implications of these findings and limitations of the study are discussed.

As physical activity can prevent overweight and promote general health, the aim was to investigate the amount of physical activity among adolescent and young adult women and men with intellectual disability (ID), compared to age-matched control groups without intellectual disability. A further aim was to examine whether physical activity level was associated with the body mass index (BMI). Fifty-two adolescent and young adult women and men with intellectual disability and 48 without intellectual disability, between the ages 16 and 20 years, BMIs ranging from 16.3 to 50.3 kg/m(2) , were measured for number of steps taken with a pedometer for five consecutive days (Sunday-Thursday). The only group to meet recommendations regarding number of steps (10 000-12 000/day) was women without intellectual disability. No significant associations were found between total number of steps taken and BMI. As the majority of adolescents and young adults with intellectual disability, especially women, did not reach recommended activity levels regardless of their BMIs, this call for broad measures to increase physical activity. © 2015 John Wiley & Sons Ltd.

Promoting the health and social participation of adolescents with intellectual disability is important as they are particularly vulnerable to encountering difficulties in those areas. Integration of these individuals in integrated sports is one strategy to address this issue. The main objective of this study was to gain a better understanding of the factors associated with the integration of adolescents with intellectual disability in sports alongside their non-disabled peers. Individual interviews were completed with 40 adolescents with intellectual disability and their parents, while 39 rehabilitation staff participated via either a discussion group or self-administered questionnaires. The Disability Creation Process (DCP) theoretical model was used to frame the analysis and the presentation of the findings (The Quebec Classification: Disability Creation Process. International Network on the Disability Creation Process/CSICIDH, Québec, QC, 1998). Various personal and environmental factors that have an impact on integration in sports were identified by participants. For example, attitudes, practical support, individuals' experiences in sports and in integrated settings as well as behaviour control emerged as important elements to consider. Integration in integrated sports can engender a lot of benefits for individuals with intellectual disability, their parents and non-disabled athletes. However, many barriers need to be removed before such benefits can be more widely realized.

This study investigated health-related fitness in adolescents with intellectual disabilities and analysed the various performances in physical fitness tests according to degrees of obesity. Eighty-seven French intellectual disabilities adolescents (14.24 ± 1.48 years) performed the EUROFIT physical fitness test battery. Height, weight and waist circumference were assessed, and BMI and waist-to-height ratio were calculated. 'Bio-impedancemetry' evaluated body fat (BF) percentage. Ninety-four per cent of the adolescents completed the aerobic running test, 52% of which had low VO(2max). Thirty-seven per cent were obese (%BF), and 32% had excess visceral adipose tissue. Adolescents with the lowest cardiorespiratory fitness had the highest BF percentages (P < 0.001). Intellectual disabilities adolescents showed low physical fitness and high prevalence of obesity. Both could further worsen social participation and health status.

Background High friendship quality is often defined by high levels of intimacy, companionship, closeness and low levels of conflict. Quality friendships develop over time and may be influenced by both behaviour problems and social skills. Materials and methodsParticipants were 103, 13-year-old adolescents with or without intellectual disabilities in the United States. Adolescents and their mothers participated in an open-ended interview of friendship quality and completed measures of social skills and behaviour problems. This study addressed differences in friendship quality between children with and without intellectual disabilities and explored early indicators of friendship development. ResultsAdolescents with intellectual disabilities (ID) had friendships characterized by significantly lower levels of warmth/closeness and positive reciprocity than their typically developing peers. Likewise, adolescents with ID spent less time with friends outside of school and were less likely to have a cohesive group of friends. Social skills and behaviour problems at age 9 predicted friendship quality at age 13 above and beyond disability status, with higher levels of social skills and lower levels of behaviour problems related to higher ratings on measures of friendship quality. Conclusions It appears that adolescents with intellectual disabilities have friendships that are characterized by less warmth/closeness and less positive reciprocity than the friendships of their typically developing peers. This discrepancy appears to be impacted by early social skills and behaviour problems in addition to the presence of the intellectual disability.

Although life expectancies in Down syndrome (DS) have doubled over the past 3-4 decades, there continue to be many early deaths. Yet, most research focuses on infant mortality or later adult deaths. In this US study, hospital discharge and death records from the state of Tennessee were linked to examine 2046 hospitalized individuals with DS (85 died) in three age groups: children (1-9), adolescents (10-19) and young adults (20-29). Most deaths occurred to young adults, while children had the most hospitalizations. Leading causes of death were cardiovascular and pulmonary conditions, and patients who died had longer hospital stays. Proportions of female deaths rose in young adulthood, and disproportionately more African Americans died at each age period. Mortality is high among young adults with DS. Special vigilance is needed for individuals with DS who are female, African American and in their 20s.