UCLA

Autism Spectrum Disorder (ASD) is one of the most common neurodevelopmental disorders with recent surveillance efforts estimating that 1 in 44 children are affected (CDC, 2021). ASD symptoms manifest early in life at different rates through infancy and toddlerhood, with diagnosis reliably available by 3 years of age. Our increased ability to identify and diagnose children with ASD has resulted in a strong research base of highly effective evidence-based practices for the early treatment of ASD symptoms. Parenting a child with ASD presents a unique set of challenges that may influence personal wellbeing and the family system. Elevated stress in parents of children with ASD is well indicated in the literature and has been associated with mental health outcomes related to anxiety, depression, and diminished self-efficacy, and can impact treatment efficacy in parent-mediated intervention practices. The unique complexities associated with raising a child with ASD put parents at greater risk, warranting a closer examination into the characteristics associated with stress and potentially sensitive periods of stress throughout development as it relates to raising a child at high-risk. Despite advancement in early treatment practices for children with ASD, the long-term outcomes of infants at high-risk and their families is less understood in the literature. Thus, the current study aimed to examine long-term outcomes of toddlers at-risk for ASD and their caregivers. The study follows from an earlier treatment trial on promoting development in young children with communication delays (Kasari, Siller, Huynh, Shih, & Swanson, et al., 2014). High-risk toddlers aged 15 to 30 months demonstrated a communication delay, exhibited early signs and symptoms consistent with ASD, and screened positive on ASD risk measures (n=40). Toddlers and their caregivers were followed across a 12-month period from baseline to 36-months of age at which time the initial autism diagnostic evaluation was administered (Phase 1). Approximatley half of the original sample from Site 1 (n=18) participated in the five year follow up study when participants were in middle childhood (mean=8.03 years) (Phase 2). Methods: The goal of the study was to prospectively examine longitudinal outcomes of infants at high-risk for ASD and their caregivers. The first aim of the study was to examine cognitive, behavioral and clinical outcomes in toddlers at high-risk for ASD over time including: developmental patterns of cognitive growth over time using DQ measured across five timepoints, stability of ASD diagnostic status (autism, autism spectrum, non-spectrum), and stability of ASD severity as indicated on standardized ADOS Comparison Severity Scores. The second aim of the study was to examine parental stress and wellbeing as it relates to child and parent characteristics across potentially sensitive developmental stages, including identification and diagnosis (Phase 1) and entry into the early school years (Phase 2). Lastly, the third aim of the study was to examine perceived social support and positive perceptions of parenting as a protective factor to mitigating parenting stress of raising a child at high-risk for ASD. Results: The analyses yielded three main findings: (1) Early identification, diagnosis and treatment seem critical for optimal outcomes for toddlers at high-risk for ASD as the entire sample of high-risk infants showed significant improvement in cognitive gains over time with more ABA early intervention hours being associated with significantly greater improvement in cognitive gains over time. Three distinct growth patterns emerged in toddlers at high-risk for ASD: (1) inclining; (2) stable; and (3) slowing-plateauing. Further, membership in these groups was significantly associated with ASD diagnostic status with a clear increasing trend in DQ over time for both non-spectrum and autism spectrum groups, with the autism group demonstrating a much slower trend over time with initially inclining then slight slowing-plateauing trend in DQ over time. (2) Participants in the sample demonstrated stable diagnostic status over time (autism, autism spectrum, non-spectrum) and stable severity over time with small groups demonstrating increasing or decreasing severity over time. (3) Parents of children with ASD experienced elevated levels of parenting stress across time attributed to child characteristics of dysregulation in infancy and toddlerhood (Phase 1), and dysregulation and problem behavior in middle childhood (Phase 2). Despite persistently high levels of parenting stress, positive perceptions of parenting and perceived support from a significant other were protective factors in mitigating parenting stress associated with raising a child at high-risk.