Work

T48. Parents' Psychosocial Experiences Learning About Their Infants' Genetic Risk of Autism and Related Disorders

Year: 2025

Type: conference-abstract

Abstract: Background The prospect of predictive genetic testing for neurodevelopmental disorders (to identify genetic predispositions prior to the emergence of symptoms) has generated clinical and scientific interest. In the context of autism and related disorders (including those associated with seizures), opportunities for parents to learn about their child’s potential genetic risk for these conditions before symptoms emerge could help them prepare for the care their child will need and potentially facilitate treatment. However, there may be downsides, as genetic explanations for psychiatric conditions can evoke prognostic pessimism (which could yield anxiety and hopelessness, or even become self-fulfilling prophecies, if parents adopt them about their children) and diminish feelings of parenting self-efficacy. The Prospective Genetic Risk Evaluation and Assessment (PROGRESS) in Autism study follows a cohort of infants with identified genetic risk (IGR) for autism (and related disorders) and a matched group of non-IGR infants, as well as their parents. Parents complete surveys shortly after receiving their child’s genetic risk information (and a follow-up survey 12 months later) to gauge psychosocial reactions. Methods Analyses of the responses of the first 21 parents to complete baseline surveys compared IGR parents (n=10) to non-IGR parents (n=11) on measures of anxiety (Beck Anxiety Inventory; BAI), hopelessness (Beck Hopelessness Scale; BHS), regret about participating in genetic screening (Decision Regret Scale; DRS), parenting self-efficacy (Parenting Self-Agency Measure; PSAM), and parent-infant bonding (Postpartum Bonding Questionnaire; PBQ). In some cases, two parents of the same child provided responses; the 21 parents came from 15 families (7 IGR, 8 non-IGR). Unadjusted mixed effect models accounted for correlations between parents within families by treating the child as a random factor. Results Compared to non-IGR parents, IGR parents scored higher on a subscale of the PBQ measuring infant-focused anxiety (Cohen’s d=1.07, p=.037), and marginally higher on the BAI (d=0.89, p=.071), BHS (d=0.89, p=.072), and DRS (d=1.10, p=.061). Though some p-values did not reach statistical significance given the small sample size, all these c estimates of effect size were in the large range. There were no marked between-group differences in other PBQ subscales or PSAM scores. Discussion Parents who learn that their infant is at identified genetic risk of autism or related disorders may experience heightened anxiety and hopelessness in the period immediately following the disclosure of the genetic finding and experience regret about participating in genomic screening. The present research differs from other studies of the impact of similar genetic information in that the genetic findings are generally disclosed to the parents before the emergence of symptoms. Importantly, the present results only speak to reactions observed immediately after receiving genetic screening results, in a small group of parents. If similar patterns continue to be observed as the sample of parents grows, and to persist over time as parents complete follow-up surveys, such impacts should be considered when implementing newborn screening programs and by clinicians caring for families undergoing such screening, especially as treatment options and screening timelines evolve. Future qualitative interviews will also explore a subset of PROGRESS parents' reactions and views in greater depth than is possible in surveys. Disclosure Nothing to disclose.

Source: European Neuropsychopharmacology

DOI: 10.1016/j.euroneuro.2025.08.331