Being the parent of a young child can be hard: managing tantrums, unpredictable behavior, unsupportive looks, and unsolicited advice, often with little sleep or time for yourself. Being the parent of a young child with autism spectrum disorder (ASD) comes with added challenges, which the study by Gengoux et al1 aims to address.
Studies show that parents of children diagnosed with ASD report feeling dismissed or blamed by their health care providers at a higher frequency than parents of typically developing children, possibly contributing to delays in diagnosis and mistrust of the medical system.2,–4 Systems issues and inconsistent messaging can exacerbate these issues. Despite improvements in screening and earlier diagnosis, the time between parental concerns and diagnosis is close to 3 years,4 yet we emphasize the importance of early intervention. After diagnosis occurs, parents may experience a sense of grief or loss, eventually coming to the realization that their parenting journey will look much different from what they had envisioned.5 Next is the search for treatment services and the need to navigate complex systems of care and long wait times, often accompanied by a sense of urgency and worry.5
During this journey, parents become advocates, care coordinators, and insurance experts while also interpreting their child’s unique behavior for educators, friends, and relatives. Children with ASD can be difficult to parent because of the increased likelihood of irritability, aggression, and behavioral rigidity, and parents may need to alter their approach to parenting for their child with ASD.6 The core facets of the disorder (difficulties with social communication and unusual behaviors) can affect some of the most joyful aspects of parenting, namely playing and interacting with the child in a reciprocal way. The battles that parents of children with ASD must fight can erode parental self-efficacy, the belief that their efforts will make a difference in their child’s life.7 Increased rates of depression and anxiety have been reported, associated both with child-related factors as well as barriers faced by parents.2
In this study, Gengoux et al1 performed a randomized controlled trial with 24 children ages 2 to 5 in each arm to compare community care with a 24-week-long parent training and clinician-delivered, community-based intervention aimed at improving communication skills. The children enrolled in the study were diagnosed with ASD and had significant language impairment; most were also receiving speech therapy, enrolled in school, and participating in applied behavioral analysis, an intensive intervention for ASD. Parent training was delivered by masters-level clinicians, and clinical interventions were delivered by supervised, bachelors-level staff, expanding the reach of traditional, clinician-delivered interventions. After the study period, children in the intervention group showed improved social communication skills compared with those in the community treatment arm. Scored video observations showed that parents in the intervention arm were able to successfully implement the training, and retention rates were high, suggesting that the intervention was feasible. In short, parents whose children were already receiving intensive, evidence-based ASD treatments were taught strategies to interact with their children, whose social communication skills subsequently improved.
As noted by the authors, the study is not without limitations. Before wide-scale dissemination can be recommended, results should be replicated and the intervention scaled to a larger population, including families in underserved areas and non–English-speaking families, who can be subject to disparities in ASD care.8 Children in both arms were receiving other interventions as well, raising the question of whether participation in those interventions was necessary for further improvement to occur. The number of hours per week required for participation could be difficult for some families to achieve, and there is a potential concern of relying too heavily on parents as clinicians as opposed to “letting parents be parents.” However, the opportunity to enhance parents’ innate ability to interact with their young child and to simultaneously improve the quality of those interactions is likely to be therapeutic for both the parent and child.
How does such a specialized intervention intersect with the work that pediatricians do every day? It serves as a reminder for us to listen to parents and attend to their concerns because the time to diagnosis may be long. It reminds us as specialists that we must develop innovative service-delivery models to shorten wait times because specialized treatment often does not begin until diagnosis has occurred. It reminds us of the need to support parents as they embark on a complex and sometimes disheartening journey through the diagnostic and treatment processes. And lastly, it should remind us of the privilege afforded to us as pediatricians: to help parents realize and celebrate the joys of being parents.
Opinions expressed in these commentaries are those of the author and not necessarily those of the American Academy of Pediatrics or its Committees.
FUNDING: No external funding.
COMPANION PAPER: A companion to this article can be found online at www.pediatrics.org/cgi/doi/10.1542/peds.2019-0178.
POTENTIAL CONFLICT OF INTEREST: The author has indicated she has no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The author has indicated she has no financial relationships relevant to this article to disclose.