Royal Prince Alfred Hospital Royal Prince Alfred Hospital
Allergy Unit

Student research

Origin of Stress, Depression & Anxiety in Parents of
Autistic Children & the Impact on the Family:
A Quantitative and Qualitative Study

Amanda Hart
Master of Science (Nutrition and Dietetics), University of Wollongong
Supervisors: Velencia Soutter, Anne Swain
November 2004

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Introduction: Autistic Spectrum Disorder (ASD), is a lifelong disability that impairs 3 main areas: communication skills, social interaction and behavioural patterns. The cause of autism is not understood & families trying to cope with ASD are searching for answers. Despite the increasing involvement of parents as the child's therapist in interventions, little is known about the effects of involvement on the whole family. Parenting a child with ASD endures more stress than parenting a child with any other disability & heightens negative outcomes on health. The children & families living with ASD face many practical & emotional challenges.

Objectives: Minimal research has focused on the stress & impact on the parents & family of ASD children, & in particular the origin of such stress & depression. Consequently, the present study sought to explore the predictors of stress levels of parents, as well as to examine the degree of impact on the family a child with ASD has.

Methods: A combination of quantitative & qualitative methods was used for this study. Self administered questionnaires were sent to parents; (n= 71) as ASD and (n= 40) as control. Questionnaires aimed to examine the mental status of parents including stress, depression & anxiety, by testing the influence of several variables on them. Six focus groups of the ASD cohort were conducted to investigate in greater detail the indicators of stress & to identify any other sources not explored in the questionnaire. The combination of quantitative & qualitative data enabled a complete holistic approach to be achieved.

Results & Discussion: Children with ASD showed significant learning and behavioural problems & parents of ASD children had far greater levels of stress, anxiety & depression. Key indicators in the questionnaires & focus groups were the personal impact on parents & the social limitations they experience. A key source of social limitation is the unpredictability of the children's behaviours, and the fear of them having a "meltdown". Focus groups represented 27% of the ASD cohort. They reinforced social & personal factors, & highlighted the impact on siblings. Disappointment with the medical profession was also identified in the focus groups as a key issue for parents.