Parents' Decisions to Disclose Their Child's Autism Spectrum Diagnosis to Their Child

Background:  

Although research exists on parents’ experience in receiving an autism spectrum disorder (ASD) diagnosis for their child (Brogan & Knussen, 2003), there is a dearth of research on parents’ experiences in relaying that diagnosis to their child. In one interview study, researchers identified diagnosis disclosure as an important theme present in the perceptions of high-functioning college students with ASD, who indicated that their families were aware of the ASD diagnosis before it was shared with them (Huws & Jones, 2008). What factors prompt families to share an ASD diagnosis at a specific time and how do parents explain the diagnosis to their children? Given the highly personal and vulnerable nature of this information, parents would likely benefit from more research on how and when to disclose, and what strategies may be most effective. 

Objectives:  

The aim of this study is to gather descriptive data about when, how, and why parents shared the ASD diagnosis with their now adolescent (age 15) son or daughter.  A secondary objective will be to connect these factors to youth outcomes. 

Methods:  

Subjects included families of children with ASD (n=43) who were interviewed when the children were 15 years old. Parents were interviewed about various aspects of their son’s or daughter’s life including whether and when they have shared the diagnosis, how they described ASD, and why they chose that particular time. Interview responses were transcribed and coded for themes. Parents also completed questionnaires, including the CBCL and SCARED, on the youth’s current functioning. 

Results:  

Results indicated that the majority of parents disclosed their child’s diagnosis by the time the youth was age 15. The mean youth age at disclosure was 8.58 years old (SD=3.39; range: 1-13 years), supporting the presence of a discrepancy for many families between parent knowledge and child knowledge of the diagnosis. Parents reported a wide range of reasons why they chose a given time to share the diagnosis with their child. Most commonly, parents led the discussion; however, several children initiated the discussion with their parents. In parents’ self report of how they described the diagnosis, parents included significantly more negative comments (e.g., explaining deficits) than positive comments (e.g., strengths), t=4.233, p<.001.

Preliminary analyses regarding youth outcomes indicated that children told in middle childhood (ages 8-10) showed higher levels of internalizing problems at age 15 than children told in early childhood (age < 7) or early adolescence (ages 11-13) by parent report on the SCARED, F=3.602, p=.038, and CBCL Internalizing, F=2.912, p=.068. 

Conclusions:  

The prevalence of ASD has dramatically increased over the past 20 years (CDC, 2014). As these children grow, more research needs to be targeted at when and how families should disclose this diagnosis to their children. These qualitative analyses indicated that parents vary with respect to how, when, and why diagnosis disclosure occurs. It is possible that there may be a developmental window that is optimal for a discussion of diagnosis with a child with ASD, but the current analyses are limited due to their cross-sectional nature.