Adverse Family Experiences Are Associated With Age of Diagnosis Among Children With Autism Spectrum Disorder

BACKGROUND: Early identification of autism spectrum disorder (ASD) is critically important to improve developmental and behavioral trajectories beyond early childhood. By capitalizing on this sensitive period for development, timely interventions can reduce the severity of ASD symptomatology and associated morbidity, resulting in higher quality of life and improved adult outcomes among individuals with ASD. Even though ASD can be identified as early as 16–24 mo, a significant proportion of children are not diagnosed until the school years. One variable yet unexamined in the literature is the role of adverse family experiences in timely diagnosis of child ASD. We conceptualize adverse family experiences as a barrier to accessing timely diagnosis for children with ASD. We hypothesize that families with higher levels of adverse experiences will report delayed receipt of ASD diagnosis. The objectives of our study were as follows: (1) to describe the frequency and type of adverse experiences among families of children with ASD and (2) to explore the individual and cumulative effects of adverse family experiences on timing of ASD diagnoses.

DESIGN AND METHOD: Cross-sectional interview data from the 2011–2012 National Survey of Child Health were analyzed to estimate prevalence of adverse family experiences and timing of diagnoses among U.S. families of children with ASD (age 3–17 yr; N = 1,611; estimated population = 1,165,434). Child ASD status and age of diagnosis were obtained from parent report; adverse family experiences were assessed with the modified Adverse Childhood Experiences Scale. Bivariate and multinomial logistic regression analyses were used to investigate the relationship between adverse childhood experiences (ACEs) and child ASD status. Parametric survival analysis was used to estimate age of ASD diagnosis.

RESULTS: Half (50.9%) of children with ASD were exposed to ≥1 family ACE, while 10.2% reported ≥4 ACEs. Analysis at the level of individual ACEs revealed that children with ASD experienced income insufficiency, neighborhood violence, and parental divorce, mental illness, and substance abuse. Children with ASD who experienced 1–3 ACEs were diagnosed, on average, 7.6 mo later than children without ACEs (p = .034). Children with ASD who experienced >4 ACEs received their diagnoses approximately 12 mo later than children without ACEs (p = .08).

CONCLUSION: Our results suggest that family ACEs may pose a significant barrier to timely diagnosis of ASD among U.S. children. Screening, treatment, and referral for ACEs may be a key complement of health care for vulnerable families of children with developmental disabilities, such as ASD, to improve timely health care access and utilization. By identifying and addressing ACEs early in a family’s history, occupational therapy practitioners have the opportunity to reduce family stress, support parents in meeting their child’s diagnostic and treatment needs, and potentially improve children’s developmental trajectories over the life course

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