Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism

BACKGROUND: The estimated prevalence rate of Pervasive Developmental Disorders (PDD) in children is 6 per 1.000. Parenting children who are intellectually impaired and have PDDs is known to be linked to the impaired well-being of the parents themselves. However, there is still little available data on health-related quality of life (HRQL) in parents of children with Asperger Syndrome (AS) and High-Functioning Autism (HFA), or other PDD diagnoses in children of normal intelligence. The present study aimed to evaluate aspects of HRQL in parents of school-age children with AS/HFA and the correlates with child behaviour characteristics. METHODS: The sample consisted of 31 mothers and 30 fathers of 32 children with AS/HFA and 30 mothers and 29 fathers of 32 age and gender matched children with typical development. Parental HRQL was surveyed by the use of the 12 Item Short Form Health Survey (SF-12) which measures physical and mental well-being. The child behaviour characteristics were assessed using the structured questionnaires: The High-Functioning Autism Spectrum Screening Questionnaire (ASSQ) and The Strengths and Difficulties Questionnaire (SDQ). RESULTS: The mothers of children with AS/HFA had lower SF-12 scores than the controls, indicating poorer physical health. The mothers of children with AS/HFA also had lower physical SF-12 scores compared to the fathers. In the AS/HFA group, maternal health was related to behaviour problems such as hyperactivity and conduct problems in the child. CONCLUSION: Mothers but not fathers of children with AS/HFA reported impaired HRQL, and there was a relationship between maternal well-being and child behaviour characteristics

Insomnia in school-age children with Asperger syndrome or high-functioning autism

BACKGROUND: Asperger syndrome (AS) and high-functioning autism (HFA) are pervasive developmental disorders (PDD) in individuals of normal intelligence. Childhood AS/HFA is considered to be often associated with disturbed sleep, in particular with difficulties initiating and/or maintaining sleep (insomnia). However, studies about the topic are still scarce. The present study investigated childhood AS/HFA regarding a wide range of parent reported sleep-wake behaviour, with a particular focus on insomnia. METHODS: Thirty-two 8–12 yr old children with AS/HFA were compared with 32 age and gender matched typically developing children regarding sleep and associated behavioural characteristics. Several aspects of sleep-wake behaviour including insomnia were surveyed using a structured paediatric sleep questionnaire in which parents reported their children's sleep patterns for the previous six months. Recent sleep patterns were monitored by use of a one-week sleep diary and actigraphy. Behavioural characteristics were surveyed by use of information gleaned from parent and teacher-ratings in the High-Functioning Autism Spectrum Screening Questionnaire, and in the Strengths and Difficulties Questionnaire. RESULTS: Parent-reported difficulties initiating sleep and daytime sleepiness were more common in children with AS/HFA than in controls, and 10/32 children with AS/HFA (31.2%) but none of the controls fulfilled our definition of paediatric insomnia. The parent-reported insomnia corresponded to the findings obtained by actigraphy. Children with insomnia had also more parent-reported autistic and emotional symptoms, and more teacher-reported emotional and hyperactivity symptoms than those children without insomnia. CONCLUSION: Parental reports indicate that in childhood AS/HFA insomnia is a common and distressing symptom which is frequently associated with coexistent behaviour problems. Identification and treatment of sleep problems need to be a routine part of the treatment plan for children with AS/HFA

Asperger syndrome and high-functioning autism in school-age children : the children's sleep and behaviour, and aspects of their parents' well-being

Asperger syndrome (AS) and high-functioning autism (HFA) are pervasive developmental disorders (PDD) in children of normal range intelligence. Individuals with AS/HFA have impairments in social interaction, communication, and restricted behavioural repertoire, deficits that significantly interfere with their well-being and ability to adapt to ordinary everyday life. Moreover, AS and HFA are presumed to be frequently accompanied by co-existing psychiatric problems and disturbed sleep. Such comorbidities may impose further distress on the children and may increase caregiver burden. Two main objectives of this thesis were to explore if children with AS and HFA have disturbed sleep, and if their parents have impaired health-related quality of life (HRQL). Thirty-two 8-12-year-olds with AS/HFA, 28 boys and 4 girls, and 32 age- and gender- matched typically developing children participated. Sleep patterns of the children were assessed at baseline, and at a follow-up, 2-3 years later, by parental questionnaire and by one-week sleep diary and actigraphy. Paper I compared sleep patterns of the children with AS/HFA and the controls at baseline. The AS/HFA group had more parent-reported sleep problems, earlier sleep timing (bed- and get up time) at weekends, prolonged sleep latencies during the whole week, and lower sleep efficiencies on school days. Separate analyses within the AS/HFA group showed longer sleep latencies, and greater night-to-night variability of sleep latency in children with, compared to those without parent-reported sleep problems. Paper II detailed a wide range of sleep-wake behaviour and symptoms of paediatric insomnia at baseline. Children with AS/HFA had more difficulties initiating sleep, and more daytime sleepiness than controls, and 10/32 children in the AS/HFA group, but none of the controls, fulfilled current criteria for paediatric insomnia. Within the AS/HFA group, children with insomnia had higher scores of parent-reported autistic and emotional symptoms, and more teacher-reported emotional and hyperactivity symptoms than those children without insomnia. Paper III examined development of sleep patterns from baseline to a follow-up in 23/32 of the children with AS/HFA and in 22/32 of the controls. Results indicated that persisting parentreported sleep problems were much more common in the children with AS/HFA than in the controls; 10/23 versus 1/22, respectively. Also, prolonged actigraphic sleep latencies on school days, and earlier sleep timing (get up time) on weekends were persistent in a significant proportion of children with AS/HFA. Paper IV investigated the self-reported HRQL of the parents of the children with AS/HFA and of the parents of the controls. The mothers of the children with AS/HFA had poorer physical health than control mothers, and than fathers of both groups. Maternal HRQL in the AS/HFA group was also related to co-existing behaviour problems in the child. Conclusion: In childhood AS/HFA, difficulties initiating and maintaining sleep are common and distressing symptoms, and mothers of children with AS/HFA frequently report impaired physical well-being