Holiday, What Holiday? Vacation Experiences of Children with Autism and Their Families

This work aims at identifying the types of holiday experienced by families of children with autism spectrum disorder (ASD). 35 families of ASD children and 25 control families of children with Down’s Syndrome (DS) living in Scotland took part in a small scale semi-qualitative study to explore their experiences on holiday. In both groups, a significant proportion of the families had not taken any holiday away from home more than once in the last 3 years and there was limited use of children holiday centers. Families of ASD children who had been on holiday expressed overall less positive impressions of their experiences and showed limited use of public places such as restaurants, cafes, cinemas and hotels normally accessed by typical families whilst on vacation. Five areas were identified as influencing the quality of their experiences: 1-child’s disability, particularly with regard to behavior, 2-lack of suitable holiday structures, 3-financial limitation of the family, 4-lack of empathy from surrounding communities towards the disabled child and his or her family, 5general state of exhaustion of the parents. The paper further describes two pilot holiday community experiences organised with 10 families with ASD children in an attempt to address some of the issues hereby identified. A retrospective analysis of these experiences and surveys suggests that amongst all five identified barriers, the issue of the child’s behavior is the most significant difficulty encountered by these families. Supporting families in understanding and improving their child’s’ behavior is needed to enable families to maximise their experience on holiday. Increasing the understanding of the condition, improving access to leisure activities and some financial aid would equally be beneficial. *Corresponding author: Lorene Amet, Autism Treatment Plus, Mulberry House, 21 Manor Place, Edinburgh,EH3 7DX, UK, Tel: 0131 558 7444; E-mail: [email protected] Autism Spectrum Disorders (ASD) are developmental disorders characterized by impairments in language, communication and social functioning accompanied by a restricted range of interests and behaviours [1]. Although the exact pathology of these disorders is unknown it is believed that a combination of genetic vulnerability and environmental factors (in utero, peri-natally and in infancy) cause a failure in the normal development of the central nervous system. ASD is now officially recognized to affect 1% of children aged 5-16 in the UK; these conditions are more often associated with physical and health complaints than any other mental disorder [2]. Affected children can suffer from acute sensory sensitivity (sound, light) [3], anxiety [4] and sleep disorders [5]. Autism varies in degree of impairment, ranging from mild to severe [1]. It has been reported that psychological difficulties and stress are much more prevalent in parents of children with autism than in parents either of non-disabled children [6,7] or of children with mental retardation or Down Syndrome [8,9]. A large proportion of parents (81.9%) were reported to be stretched beyond their limits [10]. Increased divorce rates are reported, with 1 in 3 families with ASD children breaking up in the UK [11] compared to a national average of 1 in 10 [12] and a per annum annual divorce rate in 2005 in England and Wales of only 1.3% [13]. The level of psychological distress was found to relate to the paucity of welfare support provided to the family as well as to the level of behavioral impairment of the ASD child. A National Health Interview Survey conducted in the United States in the years 2003-2004 on a sample of parents of 102 children with autism indicated that 43% of children had emotional problems, 34% had conduct problems, 65% had hyperactivity issues, 82% had difficulties interacting with peers [14]. The 5 main categories of conduct problems were violence and aggression to others, self-injurious behavior, destructive behavior, repetitive and stereotyped behavior, and disruptive and antisocial behavior. A child with ASD places additional pressures on the family. Difficult and challenging behaviors can prevent families from attending events together; couples often cannot spend time alone due to extreme parenting demands and the lack of qualified staff to supervise the disabled child in their absence. In addition, the responses of fathers and mothers to the disability of a child with autism reveal different levels of perceived stress and impaired health [15-17], potentially contributing to conflict. A further significant stress factor relates to the increased cost of living, most particularly for parents who are unable to work due to their duty of care [18,19]. Additional factors impacting on the family relate to the lack of adequate support services, the lack of acceptance of autistic behavior by society and sometimes by family members, and a low level of social support [10,17,20,]. A National Survey of Children’s Health conducted in the United States further has confirmed a range of problems including diminished family functioning, more school absences, less participation in community activities, and difficulties with child care and employment [21]. According to the American Academy of Paediatrics, “Families are the most central and enduring influence in children’s lives... the health and well-being of children is inextricably linked to their Citation: Amet L (2013) Holiday, What Holiday? Vacation Experiences of Children with Autism and Their Families. Autism 3: 123. doi:10.4172/21657890.1000123