Expecting Family Members to be on Board: Parents’ Disclosure of Their Child’s ASD Diagnosis to Relatives

Poster Presentation
Saturday, May 12, 2018: 11:30 AM-1:30 PM
Hall Grote Zaal (de Doelen ICC Rotterdam)
S. Thompson-Hodgetts1, L. G. Rogers1, R. Mazumder1 and S. K. Phelan2, (1)University of Alberta, Edmonton, AB, Canada, (2)Occupational Therapy, University of Alberta, Edmonton, AB, Canada
Background: Parents who receive a diagnosis of ASD for their child are faced with immediate and ongoing decisions of who to inform about the diagnosis. There is little in the literature to support parents in making these disclosure decisions, and to inform professionals who often support parents in these decisions.

Objectives: To investigate why, when and how parents disclosed their child’s autism diagnosis to others, including both the decision-making process as well as the impact of these disclosure decisions. This abstract represents the results of disclosing the ASD diagnosis to relatives.

Methods: A constructivist grounded theory design was used. Grounded theory is well established for the investigation of complex, multi-faceted human experiential phenomena, offering a theoretically rich understanding of processes and perceived outcomes. We interviewed 25 parents of children diagnosed with ASD across Alberta, Canada. Our diverse sample included 19 mothers and 6 fathers (aged 28-56 years) of 23 children (19 males and 4 females, aged 3 to 13 years). Children were diagnosed between one month and eight years prior to the interview. Five participants indicated they immigrated to Canada, away from their relatives. Interviews were transcribed verbatim and managed through NVivo 11 Pro.

Results: Parents reported various criteria and factors that affected why, when and how they disclosed their child’s ASD diagnosis to their relatives. While some parents told all family members, many had a more mixed profile of reporting to some relatives and not others. Factors affecting disclosure included the relationship, age, and geographic distance from relatives; how much contact they had with relatives on a day-to-day basis; and whether disclosing diagnosis to a relative offered perceived benefit to the child or parent. Parents rarely disclosure to their elderly parents or those who were geographically distant if they thought the diagnostic information would worry them. Results of disclosure were complex. Participants’ reported that relatives’ responses ranged from many who received support and acceptance by relatives, to well-meaning but not helpful responses from relatives, denial of the diagnosis, lack of understanding of ASD, and imposing judgment on the parents for poor parenting and family genetics. Further complicating the disclosure process were cultural and societal factors of stigma and blame which were imposed on the parents from relatives and others. More complex interactions were also described including the parents and relatives coming to terms with recognition of a potential ASD diagnosis among family members including spouses. Couples often differed in preferences for disclosure to relatives, but, except in a few cases, this lack of agreement was not reported as a source of conflict; often parents would agree that one parent take the lead in the disclosure process.

Conclusions: The processes involved in disclosing the diagnosis of ASD to relatives are complex. In many cases relatives were available to support parents, but in other cases relatives became a source of additional worry and stress for the parents at a time when they desired support.