Royal Prince Alfred Hospital Royal Prince Alfred Hospital
Allergy Unit

Student research

Social Impact of ASD on Families and Alternative Treatments

Maria Andonopoulos
Graduate Diploma in Biomedical Science, University of Wollongong
Supervisors: Velencia Soutter, Anne Swain
November 2003

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Introduction: There is increasing interest about the involvement of diet in the etiology and treatment of Autistic Spectrum Disorder (ASD). However, minimal research has focused on parental beliefs and practices in the management of children with ASD, or the impact that a child with ASD potentially has on their family. The search for effective orthodox and unorthodox treatments for children with ASD can be difficult and exhausting for primary caregivers. Anxiety-related traits have been associated with the burden of caring for children with ASD, and may also contribute to the development of psychiatric problems in parents.

Objective: To examine the role of diet, parental beliefs and practices with regard to the management of children with ASD. Also, to explore levels and predictors of stress in primary caregivers of children with ASD compared to children without ASD.

Methods: Questionnaires were posted to primary caregivers of three groups, namely children diagnosed with ASD, those with milk intolerance and a control cohort. The questionnaires were designed to gather information about the children, including developmental history, and behavioural, sleep and food issues. The mental health status of parents and the impact of the child on the family were also examined. Focus groups were conducted with primary caregivers, which aimed to explore their experiences in the management of ASD.

Results: Data from 73 participants was analysed. Compared with children without ASD, primary caregivers of children with ASD experienced higher levels of depression, anxiety and stress. The impact of a child with ASD on their family was greater than for children without ASD, including those with food intolerance.

Some parents found their child's eating habits difficult to cope with, and many of these were not willing to consider dietary modification for this reason. Others however, found dietary modification effective and relatively easy to implement.

Discussion: The results highlighted that high levels of depression, stress and anxiety in primary caregivers are associated with difficulties in coping with children with ASD. Furthermore, parents need to have access to sufficient, suitable information, with respect to the treatment and dietary management of ASD.