First year student expectations: Results from a university-wide student survey

Although much has been written on the first-year experience of students at higher education institutions, less attention has been directed to the expectations of students when they enter an institution for the first time. This paper provides additional insights into the expectations of students at an Australian university and highlights areas in which students’ expectations may not necessarily align with the realities of common university practices. By providing opportunities for students to articulate their expectations, staff are able to use the responses for a constructive dialogue and work towards a more positive alignment between perceived expectations and levels of student satisfaction with their experience.Geoffrey Crisp, Edward Palmer, Deborah Turnbull, Ted Nettelbeck, Lynn Ward, Amanda LeCouteur, Aspa Sarris, Peter Strelan, and Luke Schneide

Comparison of Diagnostic Profiles of Deaf and Hearing Children with a Diagnosis of Autism.

There is limited research comparing the presentation of autism in deaf and hearing children and young people. These comparisons are important to facilitate accurate diagnosis, as rates of misdiagnosis and delay in diagnosis amongst deaf children and young people are high. The aim of this study was to compare diagnostic assessment profiles of a UK cohort of autistic deaf and hearing children and young people. The Autism Diagnostic Interview-Revised-Deaf adaptation was completed with the parents of 106 children and young people (deaf children = 65; hearing children = 41). The majority of items explored showed no significant differences between deaf and hearing children and young people. Differences were found in peer relationships, where autistic deaf participants were less likely to respond to the approaches of other children or play imaginatively with peers. These findings need to be taken into consideration by clinicians in the assessment process

The frequency of restricted and repetitive behaviours in a community sample of 15 month-old infants

Objective: To investigate the frequency and pattern of a wide range of restricted and repetitive behaviors (RRBs) in the second year of life. Method: Parents of 139 15-month-old typically developing infants from a community sample completed the Repetitive Behaviour Questionnaire-2 (RBQ-2), giving information on RRBs (e.g. stereotyped motor movements, sensory interests, routines and rituals and preoccupations with restricted interests) seen in their children. Results: The RBQ-2 was found to be a reliable measure of these behaviors at this age and revealed a high frequency of particular types of repetitive motor movements in 15-month-olds. Conclusion: These findings have implications for the early detection of disorders characterized by high levels of restricted and repetitive behaviors, such as Autism Spectrum Disorder (ASD)

The Incredible Years Autism Spectrum and Language Delays Parent program: A pragmatic, feasibility randomized controlled trial

Behavior problems in children with autism spectrum disorders (ASD) are common and particularly stressful for parents. This study aimed to examine the feasibility of delivering a parenting program in existing services, and the feasibility of conducting a future large‐scale Randomized Controlled Trial evaluation of the effectiveness of the intervention. Parents of children aged 3–8 years with a diagnosis of ASD, or strongly suspected ASD were eligible to participate. A multicenter, pragmatic, feasibility randomized controlled trial was conducted in four specialist children's services in Wales. Families were randomly assigned to receive the Incredible Years® Autism Spectrum and Language Delays (IY‐ASLD) parent program immediately or to a wait‐list, treatment as usual control condition. IY‐ASLD sessions were delivered once a week for 12 weeks. The primary outcomes related to feasibility (recruitment, retention, fidelity, and acceptability). Preliminary outcome analyses were conducted using covariance models controlling for study site and baseline scores. From October 5 to December 19, 2016, 58 families were randomized, 29 to IY‐ASLD and 29 to control. Three parents did not attend any sessions while 19 (73%) completed the program. Fidelity of delivery was high (88%), as was satisfaction with the program. Fifty‐three (91%) completed the follow‐up measures. All 95% CIs for effect sizes included zero in exploratory outcome analyses. This study supports the feasibility of delivering the IY‐ASLD in existing services with good levels of acceptability and fidelity evident. A larger randomized controlled trial is required to examine the effectiveness of the program. Autism Res 2019. © 2019 International Society for Autism Research, Wiley Periodicals, Inc

How well do services for young people with long term conditions deliver features proposed to improve transition?

Background - For young people with long-term conditions, transition from child to adult-oriented health services is a critical period which, if not managed well, may lead to poor outcomes. There are features of transition services which guidance and research suggest improve outcomes. We studied nine such features, calling them ‘proposed beneficial features’: age-banded clinic; meet adult team before transfer; promotion of health self-efficacy; written transition plan; appropriate parent involvement; key worker; coordinated team; holistic life-skills training; transition manager for clinical team. We aimed to describe the extent to which service providers offer these nine features, and to compare this with young people’s reported experience of them. Methods - A longitudinal, mixed methods study followed 374 young people as their care moved from child to adult health services. Participants had type 1 diabetes, cerebral palsy or autism spectrum disorder with additional mental health difficulties. Data are reported from the first two visits, one year apart. Results - Three hundred four (81.3%) of the young people took part in the second visit (128 with diabetes, 91 with autism, 85 with cerebral palsy). Overall, the nine proposed beneficial features of transition services were poorly provided. Fewer than half of services stated they provided an age-banded clinic, written transition plan, transition manager for clinical team, a protocol for promotion of health self-efficacy, or holistic life-skills training. To varying degrees, young people reported that they had not experienced the features which services said they provided. For instance, the agreement for written transition plan, holistic life-skills training and key worker, was 30, 43 and 49% respectively. Agreement was better for appropriate parent involvement, age-banded clinic, promotion of health self-efficacy and coordinated team at 77, 77, 80 and 69% respectively. Variation in the meaning of the features as experienced by young people and families was evident from qualitative interviews and observations. Conclusions - UK services provide only some of the nine proposed beneficial features for supporting healthcare transition of young people with long term conditions. Observational studies or trials which examine the influence of features of transition services on outcomes should ensure that the experiences of young people and families are captured, and not rely on service specifications

Emotional impact of genetic trials in progressive paediatric disorders: a dose-ranging exon-skipping trial in Duchenne muscular dystrophy.

Gene-modifying trials offer hope for improvement in chronic paediatric disorders, but they may also lead to disappointment and have an adverse emotional effect on families. This study aimed to examine emotional impact on participants in a paediatric exon-skipping trial

Drawing a line in the sand: affect and testimony in autism assessment teams in the UK.

Diagnosis of autism in the UK is generally made within a multidisciplinary team setting and is primarily based on observation and clinical interview. We examined how clinicians diagnose autism in practice by observing post-assessment meetings in specialist autism teams. Eighteen meetings across four teams based in the south of England and covering 88 cases were audio-recorded, transcribed and analysed using thematic analysis. We drew out two themes, related to the way in which clinicians expressed their specialist disciplinary knowledge to come to diagnostic consensus: Feeling Autism in the Encounter; and Evaluating Testimonies of Non-present Actors. We show how clinicians produce objective accounts through their situated practices and perform diagnosis as an act of interpretation, affect and evaluation to meet the institutional demands of the diagnostic setting. Our study contributes to our understanding of how diagnosis is accomplished in practice.Wellcome Trust Investigator Awar