Elsevier

Vaccine

Volume 38, Issue 40, 11 September 2020, Pages 6327-6333
Vaccine

Beliefs about causes of autism and vaccine hesitancy among parents of children with autism spectrum disorder

https://doi.org/10.1016/j.vaccine.2020.07.034Get rights and content

Abstract

Vaccine hesitancy may be more common among parents of children with autism spectrum disorder (ASD). We examined factors associated with ASD-specific vaccine hesitancy among caregivers of children with ASD who participated in the SPARK study (Simons Foundation Powering Autism Research for Knowledge). 225 participants completed an online survey containing the Parent Attitudes About Childhood Vaccines (PACV) questionnaire (measure of vaccine hesitancy) and the Illness Perception Questionnaire revised for parents of children with ASD (IPQ-R-ASD; measure of parents’ views about ASD). 65 participants (28.8%) were vaccine hesitant (PACV score ≥ 50); children of vaccine-hesitant parents (VHPs) were less likely to be first born (n = 27, 41.5%), had greater ASD-symptom severity (mean Social Communication Questionnaire score = 23.9, SD = 6.9), and were more likely to have experienced developmental regression (n = 27, 50.9%) or plateau (n = 37, 69.8%). Compared to non-hesitant parents, VHPs significantly more often endorsed accident/injury, deterioration of the child’s immune system, diet, environmental pollution, general stress, parents’ negative views, parents’ behaviors/decisions, parents’ emotional state, and vaccines as causes for ASD. VHPs also had higher scores on the Personal Control, Treatment Control, Illness Coherence, and Emotional Representations subscales of the IPQ-R than did non-hesitant parents. In the final model, ASD-related vaccine hesitancy was significantly associated with higher scores on the Emotional Representations subscale (OR = 1.13, p = 0.10), agreement with deterioration of the child’s immunity as a cause of ASD (OR = 12.47, p < 0.001), the child not having achieved fluent speech (OR = 2.67, p = 0.17), and the child experiencing a developmental plateau (OR = 3.89, p = 0.002). Findings suggest that a combination of child functioning and developmental history, as well as parents’ negative views about and their sense of control over ASD, influence vaccine hesitancy among parents of children with ASD.

Introduction

Although some data indicate that children diagnosed with autism spectrum disorder (ASD) are well-vaccinated until 2 years of age, new evidence suggests that their vaccine receipt may decline later in childhood [28]. Moreover, younger siblings of children with ASD often have lower rates of vaccine receipt compared with both (a) their older siblings and (b) the younger siblings of children without ASD [1], [2], [11], [23], [28]. This suggests that parents of children with ASD may be at risk for becoming vaccine hesitant (i.e., have concerns about vaccines), which ultimately may lead to vaccine delay and/or refusal.

Vaccine hesitant parents (VHPs) have concerns about vaccines but are typically more receptive to vaccination compared to parents who decline all vaccines [13], [22]. Prevalence of VHPs varies geographically, but estimates in the general population range from 9% to 15% [13], [22], [15]. In a local sample, we recently observed that 28% of parents of children with ASD were vaccine hesitant. The odds of being vaccine hesitant were nearly four times greater in this group compared to parents of children with non-ASD developmental delays [16]. Moreover, vaccine hesitancy was significantly associated with the belief that vaccines were a cause for their child’s ASD.

Given the public health importance of widespread vaccination, it is crucial to determine whether this locally observed higher prevalence of VHPs is consistent across the ASD community, as well as to identify other factors associated with vaccine hesitancy in this population that could inform the design of targeted, preemptive vaccine interventions. With this in mind, our objectives were to estimate the prevalence of VHPs within a nationally representative sample of parents of children with ASD, describe beliefs about causes for ASD and parents’ representations of ASD in this sample, examine the association between vaccine hesitancy and parents’ beliefs about causes of ASD, and identify factors associated with ASD-related vaccine hesitancy.

Section snippets

Methods

We surveyed parents of children with ASD who were participating in the national SPARK study (Simons Foundation Powering Autism Research for Knowledge; [25]). Briefly, SPARK enrolls individuals with ASD and their biological parents into an online repository of clinical and genetic data, with the ultimate goal of identifying new genetic causes for ASD and galvanizing the pace of autism research. Individuals of any age who have an ASD diagnosis (including an educational classification of ASD),

Results

Among the 1000 parents initially invited, 291 indicated interest in participating, 240 provided consent, 225 parents completed the PACV, and 217 completed the IPQ-R-ASD (response rate of ~22.0%). Most participants were mothers (92.0%) who self-reported as white (78.7%) and non-Hispanic (89.8%) and who were reporting on a first-born child (53.5%). Among children on whom parents reported, 79.6% were male with an average current age of 7.7 years (SD = 4.0) and an average age at ASD diagnosis of

Discussion

The prevalence of VHPs in this sample was 29%, which is higher than previously reported estimates of 9% to 15% in the general population [22], [15], [5] but similar to the rate of 28% observed among a local sample of parents of children with ASD [16]. Agreement with particular causes of ASD differed significantly between vaccine-hesitant and non-hesitant groups for several causes, with VHPs endorsing a greater number of causes for ASD and more often agreeing that external factors (

Declaration of Competing Interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Acknowledgements

The authors express their thanks to the SPARK team at the Simons Foundation and the SPARK cohort participants. We appreciate obtaining access to phenotypic data on SFARI Base. Approved researchers can obtain the SPARK dataset described in this study by applying at https://base.sfari.org. The SPARK cohort is funded by the Simons Foundation. This project was initiated by the authors without specific or supplemental funding. The sponsor played no role in designing, executing or writing up the

References (31)

  • J.H. Flaskerud

    Cultural bias and Likert-type scales revisited

    Issues Mental Health Nurs

    (2012)
  • E. Fombonne et al.

    Psychiatric and Medical Profiles of Autistic Adults in the SPARK Cohort

    J Autism Dev Disord

    (2020)
  • G. Glickman et al.

    Vaccination rates among younger siblings of children with autism

    New Engl J Med

    (2017)
  • R.P. Goin-Kochel et al.

    Emergence of autism spectrum disorder in children from simplex families: relations to parental perceptions of etiology

    J Autism Dev Disord

    (2015)
  • D.A. Gust et al.

    Parents with doubts about vaccines: which vaccines and reasons why

    Pediatrics

    (2008)
  • Cited by (19)

    • A Pediatrician's Guide to Working with Children on the Autism Spectrum in Coronavirus Disease 2019 and Beyond: Retrospect and Prospect

      2022, Advances in Pediatrics
      Citation Excerpt :

      Before the pandemic, autistic children were vaccinated at lower rates than neurotypical children [14]. Studies published after the pandemic’s onset found that reasons for vaccine hesitancy in parents of autistic children included beliefs that vaccines led to autism and developmental plateaus [15,16]. However, a large study of autistic adults found higher rates of COVID-19 vaccination compared with age-matched controls, while acknowledging varying vaccine practices across countries and populations [17].

    • Parent intentions to vaccinate children with autism spectrum disorder against COVID-19

      2022, Journal of Pediatric Nursing
      Citation Excerpt :

      This need is especially critical for vaccine-hesitant parents of children with autism spectrum disorder (autism). There is a persistent, erroneous belief in the US that vaccines cause autism, a belief associated with higher levels of vaccine hesitancy (Goin-Kochel et al., 2020; Zerbo et al., 2018). Parents who have a child with autism are less likely to vaccinate subsequent children (Zerbo et al., 2018).

    View all citing articles on Scopus
    View full text