Oct. 25, 2017
Elephant in the Room
Upon receiving news that their child or adolescent has ASD, many families may struggle with when, how, or even if they should inform them of their diagnosis. These questions can cause parents additional stress, particularly when guidance on navigating this complex decision can be difficult to find.
When parents receive the results of the assessment and diagnosis, often before the child enters elementary school, they must come to terms with the implications of the diagnosis. Dr. Adam McCrimmon explored parents’ experience of deciding if and how they have disclosed information about an ASD diagnosis to their child. The study is intended to help support parents through this challenging time by better understanding their reasons to disclose, or not to disclose a diagnosis.
Dr. McCrimmon conducted an online survey, which received over 300 responses from families in Canada, the US, the UK, and other European and Oceanic nations. He then worked more closely with 40 families from Alberta, half of whom had chosen to disclose the diagnosis to their child.
Parents who disclosed the diagnosis were asked about their child’s context, their planning leading up to disclosure, and what their reasons were for choosing this option. These participants emphasized the benefits of their child knowing about their diagnosis, including having a better understanding of themselves, that they are not alone in the challenges they face, and allowing them the opportunity to look up information and look for their own strengths.
The age at which the parents chose to share the diagnosis varied considerably. For some, they chose to discuss the diagnosis shortly after the results were received, as early as 3 and 4 years old, though the majority disclosed the information around age 10 or 11. The experience of the disclosure was particularly important, and the participants shared what helped the conversation, and what they would have wanted to know looking back. These parents then provided advice to other families who might be considering disclosure, based on their own experience.
For those who chose not to disclose, understanding why they made their decision was key to understanding this perspective. These parents discussed wondering if there was a need to share the diagnosis, as well as potential negative outcomes around labeling, the child using the diagnosis as an excuse, or bringing unwanted attention from others as a result of the diagnosis.
These participants were also asked what information they had shared about the diagnosis with their child, and what other supports might have helped them in their journey as a parent of a child with ASD. Given that most of the children who had not been disclosed to were under 10, these parents also commented on the possibility of disclosing in the future – when or how they might approach the conversation going forward.
While presenting information about a child’s diagnosis in a developmentally appropriate way can potentially support these individuals’ development of a positive sense of self, every child and situation is unique. The disclosure process can also be complicated by many factors, including other diagnoses.
Given the response to this study, Dr. McCrimmon is currently planning to expand the study to build on the initial results. This includes considering whether parents would tell their other children about a sibling’s diagnosis, as well as talking to adults with ASD about their experience with disclosure. Dr. McCrimmon hopes to develop a resource book for parents around disclosing an ASD diagnosis, presenting the questions and experiences of families who have navigated this difficult time.
McCrimmon, A. (2016). The elephant in the room: Talking to children with ASD about their diagnosis. Executive Summary Report. PolicyWISE. Available Online.