Autism spectrum disorder (ASD) is a social and developmental disorder that is characterized by atypical communication patterns, sensory sensitivities, a preference for routine, and language delays. Although the diagnosis may only apply to one family member, its impact can significantly alter the family dynamic. Parents may find themselves navigating uncharted waters, grappling with the realization that their child’s development differs from what they expected.
In order to truly care for the needs of such families, it is integral to first understand what the most pressing issues for these families are. Following this line of thought, a study from the North-West University in South Africa conducted a meta-analysis of nine different studies to explore the impact of an autism diagnosis on families, revealing several common themes.
First, pre-diagnosis, families expressed that they could tell something was different about their child, but lacked the resources to help. As autism is a condition where an early diagnosis is beneficial to properly guide treatment plans, this is particularly troubling. A common theme was frustration at the lack of care services, as many felt they had to “fight the system” in order to get support for their child, and that even well-meaning healthcare providers lacked the knowledge or time to guide families.
Furthermore, after receiving a diagnosis, families across the board reported feeling isolated and judged by other families – even feeling they had to isolate in order to “protect their child” from this judgment. A lack of social awareness of autism can leave parents feeling blamed for their children’s symptoms, as some prejudiced strangers may attribute child behavior to poor parenting. On the other hand, families found a tight-knit community with other parents of autistic children who could relate to this loneliness. In some cases, an autism diagnosis brought parents even closer together, as there was a feeling of “working together” for the sake of the child.
Despite all the challenges that a diagnosis can pose, the majority of families in the study felt relieved at receiving one, as they no longer had to deal with the uncertainty that comes with navigating the health system and could connect with others in similar situations. However, the issues that they face highlight the need for a more robust social and medical support system for these families.
Featured Image Source: alexis-scholtz-peopleimages.com
