Personal experiences disclosed by parents of children with Autism Spectrum Disorder: A YouTube analysis

Abstract

The current study used YouTube as a data source in order to observe parents of children with ASD speaking about their experiences in a 'naturalistic' setting. Fifty videos made by parents of children with ASD were collected and qualitatively analysed using a content analytic procedure. This revealed a number of common themes expressed by the parents about their experiences across these video clips. The topics mentioned most were Issues of self; Issues with the child; Relationships; Autism and daily life; Solidarity between parents; Diagnosis; and Treatments and available services. Implications of the study emphasise a need for more social support, and more positive representations of parenting a child with ASD.

Is It Possible to Educate, Intervene or “Cure” Autism Spectrum Disorder? A Content Analysis of YouTube Videos

“…For this reason, professionals from educational and health fields should emphasize that autism is a condition and not a disease that can be cured. Previous research has found that when searching “curing autism” on YouTube, 2500 results were obtained, most of them with higher views than “living with ASD” videos [ 9 ]. As the authors of this study want to emphasize, videos that purport cures may initiate false hope in parents, preventing them from accepting and coping with the diagnosis.…”

“…The videos on YouTube that deal with this disorder often use children, youths, and adults with autism as the protagonists [ 1 , 7 ], as well as the families of children with this diagnosis, all of whom narrate their experiences from their own perspectives [ 8 , 9 ]. Several organizations, specialized in autism, upload videos on this site, in which experts such as teachers, pediatricians, or psychologists, discuss fundraising events, interventions, and therapies, among other information [ 10 ].…”

“…In addition, people with ASD can create videos by themselves, without the overlay of direct social interaction with others, making their own needs and interests known worldwide [ 4 ], and thus giving them a voice to educate others not only about autism itself, but also about how they think and feel [ 10 ]. In this sense, YouTube videos could promote a move to more social inclusion of people with this disorder [ 7 , 9 , 12 ].…”

“…Researchers have found that videos with the most views have been uploaded by non-professionals and provide limited content [ 12 , 14 ]. Although there are many that are educationally useful, such as those created by the families of children with autism [ 8 , 9 ], other videos have been found to contain erroneous information, such as, for example, those that demonstrate parental implementation of specific teaching strategies of the picture exchange communication system (PECS) [ 15 ].…”

Why are some websites researched more than others? A review of researh into the global top twenty

“…YouTube is also used by social scientists as a source of public evidence about a topic, even though the site itself is not relevant to the enquiry. For example, teams have investigated parents' video reactions to their children's autism diagnosis (Lloyd;Osborne;Reed, 2019), family reactions to being affected by the opioid crisis in the US (Johnson;Worth;Brookover, 2019), and squirrel videos to help understand their behaviour (Jagiello;Dyderski;Dylewski, 2019). Many articles are also hybrid, discussing the YouTube aspect of a wider issue, such as the representation of medical aspects of gender transformation (Miller, 2019).…”