Journal of Intellectual Disabilities

In this study, a case of Dandy–Walker variant syndrome associated with trisomy 22 in a 17-year-old man is described. This is the first account of this combination in a person surviving into adulthood, and the neuropsychological and behavioural presentation is described in detail and a clinical formulation is presented for the benefit of researchers and clinicians.

Augmentative and alternative communication (AAC) devices provide the ability for many people with disabilities to make themselves understood. For the large proportion of users with an intellectual disability, these devices may be their only means of communication. Estimates of the number of AAC devices in use are vague and lack transparency. This prevents researchers from answering key questions like ‘How many people per 1000 are using electronic AAC?’ and ‘On average, how much money would fund a person’s AAC use for 12 months?’. This work presents the ‘Domesday dataset’, which allows researchers to answer research, policy, and prevalence questions on the landscape of AAC use within the United Kingdom. This dataset was constructed by making several hundred Freedom of Information requests. These requests asked public bodies who purchase AAC devices in the United Kingdom to supply details of every AAC purchase since 2006 including make, model, and year of purchase.

Test anxiety is one of the most confronting issues in modern times with the increase in the number of standardised and high-stakes testing. Research has established that there is a direct link between test anxiety and cognitive deficits. The aim of this study is to determine the test anxiety scores of the students with intellectual disabilities in South Australia. It also provided insights into the reasons for high-test anxiety in the participants under study. The Spielberger’s Test Anxiety Questionnaire was administered on students with intellectual disabilities in stage 1. Interviews were conducted with participants with intellectual disabilities, parents and teachers in stage 2. Questionnaire findings revealed that the majority of the adolescent females and males and all adult females with intellectual disabilities had high test anxiety scores. However, the majority of adult males with intellectual disabilities obtained moderate test anxiety scores. In the worry and emotionality subscales, it was also found that the majority of adolescents and adults with intellectual disabilities were found to score high. The high test anxiety scores have been justified by the interview responses obtained from the three groups of respondents. A number of factors have been identified to be the major predictors of test anxiety in students with intellectual disabilities.

Semi-structured interviews were conducted with six parents of children with intellectual disabilities, in the Western region of Sweden. The aim of the study was to explore and to gain a deeper understanding of parents’ experiences of received support for them and their children with intellectual disabilities. We focused particularly on their experiences of the availability, accessibility, and the quality of services. Parents in this study were unsure about what the diagnosis meant specifically for their child as well as for their whole family. Moreover, the parents experienced great difficulty in obtaining information about available services, which resulted in feelings of helplessness to some. Parents also reported that although services are available, they were not easily accessible. Lastly, parents felt that the quality of care and support were to some extent inadequate, as no attention was paid by professionals to their actual needs or wishes.

This article reports on the initial stages of implementing an Australian-based education programme for parents with intellectual disabilities (IDs) in Sweden. The clinical utility of the programme, Parenting Young Children (PYC), in the new country context is explored through Swedish professionals’ experiences in learning and using it. Study participants found PYC well suited for use in their working environment. Most of them reported the programme to have strengthened their work with parents. The programme was seen as benefiting both the study participants in their work with parents with IDs and these parents themselves, and its structure and content were found to be helpful in several ways. The checklists forming part of PYC were considered useful, but their purpose was sometimes misunderstood. The reported study helps to identify what is needed to improve the translation of the programme into the new country context, to promote appropriate and more effective use of programme materials.

People with intellectual disability (ID) are reported as a sedentary population with increased risks of poor health due to an inactive and sedentary lifestyle. As the benefits of physical activity are acknowledged, measuring physical activity accurately is important to help identify reasons for low and high physical activity in order to assist and maintain recommended levels for optimal health. This article reports a pilot study undertaken to validate the use of a physical activity monitor (Sensewear Armband) and the International Physical Activity Questionnaire (IPAQ) as instruments for measuring and exploring physical activity of men with ID. The design was a one-group descriptive study and the data were collected over a 7-day period from 17 men. The Sensewear Armband enabled continuous and long-term measurement of 14 objective physical activity metrics. The IPAQ examined details of physical activity reported over 7 days. Equivalent results were obtained from both the instruments, indicating a positive correlation between the Sensewear Armband and the IPAQ. The results show 50% have low activity levels, and the national recommended physical activity levels have been achieved at a very low active intensity. No sustainable high physical activity intensity levels were recorded. The results confirmed the Sensewear Armband and the IPAQ as a practical means of measuring and understanding physical activity levels in men with ID.