When words fail; an explorative study of the experiences and impacts on families living with a child diagnosed with autism spectrum disorder

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Brennan, Kate
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BA (Hons) Counselling and Psychotherapy
Dublin Business School
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The research project was an exploration into the impacts and experiences on families living with and raising a child with a diagnosis of Autism Spectrum Disorder. The specific aim of the study was to explore how parents and siblings in the immediate family of the autistic child were affected, if at all, by living with the child. The study method was qualitative, and involved qualitative structured interviews with a sample of 4 service providers who have had or are working with children with autism, and/or have had or do have experience of point to point daily or weekly contact with the families. Each of the participants detailed comprehensive perspective of the impact on families during the duration of a 45-minute interview, which posed questions specifically on marriage impact, sibling impact, symptomatology of autism, coping strategies, gender roles within the family and service provision within the Irish State. Mothers were found to feel under a greater deal of stress than fathers. A significant financial burden was found, along with concerns around services for their child when they reach the age of 18 and a theme of frustration around alleged lack of services in general. It was also found that parents are reluctant to seek social support from neighbours and extended family members due to embarrassment around symptomatology, and also due to a sense of responsibility over the child. It was also found that a diagnosis is more difficult to accept if the child is high functioning on the spectrum. Parents with more than one child were reported to focus more energy and time to the autistic child resulting in less energy and time into siblings, however it was reported that siblings generally respond well and adjust well to the autistic child. Counselling services were not availed of by families, nor were the families offered counselling services during the diagnosis process. The traits and symptoms of autism were concluded to cause a great deal of stress to the families. Author keywords: families, autism, experience, impact