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THE PARENTS’ PERSPECTIVE: Parents open up about how their lives have been changed by autism


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Evidence-Based research on parents' experiences:

  • Parents' experiences of caring for a child with autism spectrum disorder.1
    Researchers conducted a systematic review about parents’ experiences caring for children with autism spectrum disorder (ASD). The authors searched 10 electronic databases for articles and reviewed 4,148 summaries. 31 peer reviewed qualitative studies published between 1980 and 2013 were selected for inclusion, representing discussions with 585 parents. All entailed semi-structured interviews as the primary method of data collection.

    Six recurring themes were identified: prediagnosis, diagnosis, family life adjustment, navigating the system, parental empowerment, and moving forward. For example, in pre-diagnosis, parents noticed that something was wrong in their child’s development (i.e. delayed verbal communication, lack of eye contact) and began searching for answers from professionals. This article describes each theme and presents examples. Access to the full article is available for free at the link below.

1 DePape AM, Lindsay S. Parents' experiences of caring for a child with autism spectrum disorder. Qual Health Res. Apr 2015;25(4):569-583.

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