Exploring how parents manage private information regarding their child's autism diagnosis

What is it about?

In this study, we explored how parents of children with an autism spectrum diagnosis (ASD) manage private information surrounding the diagnosis. We found that when information was perceived as more risky to share, parents were likely to communicate privacy rules to their confidants about how they expected the information to be revealed to (or concealed from) others. In addition, if parents anticipated the information shared would be shared with others (and they did not want it to be) they were less open about their child's diagnosis information and more likely to communicate privacy rules to their confidants. Finally, we found that these parents mostly confided in their own parents, siblings, friends, and certain medical professionals about the private details of their child's diagnosis.

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Why is it important?

All over the world, parents have children with a variety of health diagnoses. Some diagnoses have great impacts on the child's (and the parents') everyday experiences, some do not. Some diagnoses are severe and life-threatening, some are not. Whatever a child's diagnosis might be, parents must learn how to manage the privacy of that information with others. That is why this work, and continued work in this context, is so important.

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