Injury Patterns among Individuals Diagnosed with Infantile Autism during Childhood: A Case-Control Study

Background: To date, injury risk among people with infantile autism (IA) has been a relatively poorly researched issue. Objective: The purpose of our study was to compare the prevalence and types of injuries in a clinical sample of 118 patients diagnosed with IA during childhood with those of 336 age- and sex-matched controls from the general population. Method: All participants were screened through the nationwide Danish National Hospital Register. The average amount of time that the participants were observed was 30.3 years (range, 27.3 to 30.4 years), and the mean patient age at the end of the observation period was 42.7 years (range, 27.3 to 57.3 years). Results: Among the 118 patients with IA, a total of 52 (44.1%) were registered in the Danish National Hospital Register with at least one injury diagnosis. In the comparison group, 226 of 336 individuals (67.3%) had at least one such diagnosis. The difference is statistically significant (P < .0001; odds ratio, 0.4; 95% confidence interval, 0.3 to 0.6), and the nature of the injuries also seems to differ. Gender, intellectual level, and concurrent epilepsy were not predictive of injury risk. Conclusions: Our results lend support to the notion that injuries that require medical attention are not uncommon among an adult population of people diagnosed with IA during childhood, but they are less common than the rate found in a comparison group from the general population. It is proposed that a diagnosis of IA is related to the likelihood of institutional care, which may have a protective effect with respect to acute hospital use

‘It's like a bag of pick and mix – you don't know what you are going to get’: young people's experience of neurofibromatosis Type 1

Aims: To explore the day-to-day experience of young people living with neurofibromatosis type 1 in the UK, focusing on the role that appearance plays in this experience. Background: neurofibromatosis type 1 is a genetic condition, which is highly variable and unpredictable. It can result in varying degrees of visible difference (disfigurement). Both the effect of NF1 on appearance and its uncertainty can prove particularly difficult for those affected. However, very little research to date has investigated the psychosocial impact of neurofibromatosis type 1 on young people or their experiences of managing it. Design: Exploratory qualitative interview study. Methods: Nine young people aged 14-24, with a confirmed diagnosis of neurofibromatosis type 1, took part in semi-structured interviews between March-September 2011. Interview transcripts were thematically analysed. Findings: Three key themes were identified from the data: (1) 'Different things to different people' reflecting the variability in the condition; (2) 'Relationships and reactions' relating to individuals' social experience; and (3) 'Understanding and misunderstanding' reflecting participants' experiences with organizations and social structures. Conclusions: Findings suggest a need for further research to explore young people's adaptation and management of neurofibromatosis type 1. In particular, raising awareness and understanding of the condition among professionals and in the general public was an important issue for young people. In addition, access to trustworthy information about neurofibromatosis type 1 and practical advice to support adjustment to an altered appearance and managing stigma experiences are highlighted as areas to be considered further. © 2013 John Wiley & Sons Ltd