Examining Potential Developmental Consequences of Parental Decisions to Disclose Their Child’s Autism Diagnosis to Their Child

Background: A large body of literature examines effects of parenting an autistic child, often focusing on parental interpretations of the diagnosis. Initially, research focused on the difficulties, stress, and conflict that can accompany parenting an autistic child (e.g., Dumas et al., 1991), with more recent works focusing on positive outcomes and perspectives offered by families (e.g., Hastings & Taunt, 2002). Positive interpretations of autism by parents have been found to lead to desirable parent (e.g., self-efficacy) and child outcomes (e.g., reciprocal play, attention, and affect; Pakenham et al., 2004; Wachtel & Carter, 2008). However, research linking parents’ descriptions of autism with their children’s understanding of autism and autistic identity development has not been conducted.

Objectives:

1. Analyze if parental decisions to disclose/withhold their child’s autism diagnosis influence adolescents’ perceptions of autism
2. Evaluate how autistic young adults reflect on and learn from parental disclosure.

Methods: Adolescent participants (n = 15, M_age= 16.2) and their mothers were recruited from an informal educational program in New York City. Adolescent participants completed in-person, semi-structured interviews; mothers completed online questionnaires containing identical questions. A second sample of autistic college students (n=19, M_age = 20.9) recruited from a mentorship program answered semi-structured interviews and online surveys. Qualitative analyses of adult data focus on these interview questions: “How old were you when your parents first told you about autism? What did they tell you?” and “If you had a child with autism, when would you tell them about autism and what would you tell them?”

Results: Only participants whose parents disclosed their diagnosis voluntarily (n=6) described strengths (n=3) or neutral differences (n=3) when asked to define autism. Participants (100%) who were told about their diagnosis by a parent involuntarily (n=6) or not yet been informed of their diagnosis (n=3) focused solely on challenges associated with autism, compared with a third (n=2) of those whose parents voluntarily disclosed (Table 1).

Most (14; 73.7%) autistic college student participants were told about their diagnosis by a parent; three (16%) reported that they sought their own diagnosis or discovered their diagnosis within paperwork. When asked how they would tell their own child about an autism diagnosis, many described sharing challenges associated with autism (n=7; 36.8%), telling their child about autism in the same way they had been told (n=5; 26.3%) and self-disclosing (n=4; 21.1%). Only three (16%) planned to tell their child at a younger age than they were told.

Conclusions: Data suggest that parental decisions to disclose their child’s autism diagnosis to their child impact their children’s perceptions of autism and anticipated parenting decisions. Although benefits of parents choosing to disclose their child’s diagnosis to their child were observed, autistic young adults often planned to inform their own children about their potential autism diagnosis similarly to how they themselves had been informed. Future longitudinal research should examine how parental disclosure decisions contribute to autistic identity development over time.