Children with developmental disorders are more likely to be at risk of poor nutritional status than typically developing (TD) children. Such children tend to display idiosyncratic eating behaviours (Martins & Young 2008), adopting restrictive, repetitive and narrow food repertoires, which impacts upon their nutritional intake. This project targets children with AS because despite its rising prevalence over the last two decades (Williams, K, MacDermott, S, et al. 2008), their nutritional status has not been fully investigated. The complexity of the diagnosis, and the presence of conflicting dietary advice, increases the level of stress among caregivers of children with AS. There is a need to understand the current nutritional status of these children.
Studies have reported that children with AS are at risk of being underweight (Sobanski et al. 1999; Xiong et al. 2009). Nutritional intake is one factor influencing a child’s growth status (Hediger et al. 2008); however, the child’s food preferences influence how he/she eats (Schreck & Williams 2006). Food preferences can be multi-factorial, involving the child’s eating behaviours (Schreck, Williams & Smith 2004), associated clinical conditions (Williams & Seiverling 2010), sensory processing (Cermak, Curtin & Bandini 2010) and the caregiver’s roles (Benton 2006). Investigations about caregiver’s food preferences and clinical conditions that could explain a child’s eating behaviour are limited. Other studies have shown that caregivers of children with AS(D) were responsible for selecting the types of intervention treatment for their child under the guidance of health professionals (Pituch et al. 2011). Therefore, it is important to understand the roles of both the caregivers and the health professionals in more depth.
The present study aimed to examine the nutritional status of children with AS aged 5–15 years in Queensland, particularly their nutritional intake, growth status (i.e. height and weight), eating behaviours, food preferences, sensory processing and associated clinical conditions. This study also aimed to determine the roles of Australian dietitians and caregivers in managing the nutritional issues of children with AS.
This project consisted of two studies. Study 1 was a preliminary study involving a survey of 31 dietitians in Australia. This study investigated the roles of dietitians in managing the nutritional issues of children with ASD using a purpose designed questionnaire. Study 2 examined the nutritional status of children with AS from the perspectives of food, nutrition, and sensory issues and through a study of the caregivers’ roles. Study 2a was a cross-sectional study, involved questionnaires and a diet history, involving 31 children with AS and 25 TD children, aged 5–15 years, and their caregivers in Queensland, Australia. Study 2b involved individual food tasting sessions with 24 children with AS and 25 TD children.
Study 1 found the involvement of dietitians in managing the nutritional issues of children with ASD was limited to recommending food and nutrient supplementations; however, the role of such dietitians was not extended to the modification of the children’s current food intakes, or eating behaviours. The prescription of certain therapeutic diets to children with ASD was not commonly practised amongst the participating Australian dietitians.
Study 2 presented an array of descriptive results that identified the current nutritional status of children with AS. There was no significant differences in the anthropometric status between children with AS and TD children, with more than 90% of the children being within normal limits of physical status. Such a finding was further supported by the insignificant difference in their nutritional intakes and food preferences found in the present study. Children with AS were more likely to consume medication as compared with TD children, and more children with AS had problems with their gastrointestinal and oral function. In the individual food tasting session, both groups of children reported their least preferred food was rice bubbles with added milk. This observation reflects that a dislike of mushy foods was not exclusive to the children with AS. Foods with a strong odour distinguished food preferences between the children with AS and their caregivers. Such a finding further consolidated the smell sensitivity experienced by children with AS, which was determined by the Sensory Profile (Dunn 1999) assessment. Sensory preferences and the ritualistic behaviours of children with AS explained their frequent display of maladaptive eating behaviours. Therefore, the caregivers of children with AS tended to provide other preferred food if their child refused foods presented in a meal as compared with the caregivers of TD children. The major dietary implications were the development of an assurance and nutrition monitoring tool for caregivers, and a set of peer-reviewed educational materials addressing children’s adequate nutritional intake and sensory issues that might impact on the eating behaviours of children with AS.
The current nutritional status of the children with AS who were involved in the present study, particularly the children’s physical status and nutritional intake, was within normal limits. Knowledge of a child’s nutritional status and their caregivers’ concerns set the priority for treatment that was guided by health professionals. Further clinical and research implications are discussed in this thesis.