Wandering – or leaving a supervised space and/or care of a responsible person – is common among toddlers who are learning to explore their environment (American Academy of Pediatrics, 2021). It is much less common in older children and can be associated with serious injury, especially among those who cannot independently share their names, addresses, or phone numbers if they get lost. Wandering disproportionately affects children with intellectual and developmental disabilities, with some studies suggesting that a majority of those who wander are diagnosed with autism (A. Anderson et al., 2020; C. Anderson et al., 2012; Barnard-Brak et al., 2016; Kiely et al., 2016; Wiggins et al., 2020). Child factors associated with wandering in early childhood are anxiety, hyperactivity, significant early learning delays, and the severity of autism traits (A. Anderson et al., 2020; C. Anderson et al., 2012; Hong et al., 2018; Rice et al., 2016; T-Pederson et al., 2021; Wiggins et al., 2020).

Wandering among children with autism has been associated with risk for serious injury and premature mortality. In one study, 65% of caregivers reported that their child with autism who wandered was in danger of traffic injury and 24% reported that their child was in danger of drowning (C. Anderson et al., 2012). In another study, 17% of people with autism who were reported missing were found dead (National Autism Association, 2017). Accidental drowning accounted for most of these fatalities (71%) followed by traffic injury (18%). Wandering has also been described as the most commonly reported activity leading to fatal drowning incidents among children with autism 3–14 years of age (Guan & Li, 2017).

Adverse caregiver and family impacts of wandering have also been reported. For instance, 62% of caregivers of children with autism reported they did not attend or enjoy activities outside the home because of child wandering, and 56% said that wandering was one of the most stressful parenting challenges (Pereira-Smith et al., 2019). In addition, wandering concerns may affect up to 73% of caregivers’ decisions to let their child spend time with friends or family in their absence (McLaughlin et al., 2018). Despite these concerns, many parents of children with autism do not receive anticipatory guidance on how to prevent wandering or create emergency response plans (McLaughlin et al., 2018).

There are many available strategies to prevent wandering and intervene when a wandering incident occurs. The most commonly reported prevention and intervention measures implemented by caregivers are physical barriers like gates, fences, and locks; some of the least commonly reported are medical bracelets, tracking devices, and service animals (Andersen et al., 2020; Kiely et al., 2019; Pereira-Smith et al., 2019). Most (96%) caregivers of children with autism have used at least one of these strategies and rate their effectiveness as “good” or “very good” 75% of the time (Andersen et al., 2020). However, a majority (68%) also rate the overall burden of implementing wandering interventions as “high” or “very high” (Andersen et al., 2020). Caregivers identified cost as a major deterrent in using tracking devices to intervene when a wandering incident occurs in one previous study (Kiely et al., 2019).

Among children with autism, the reported prevalence of wandering is between 33% and 60%, with decreasing prevalence as children age based on cross-sectional data (Kiely et al., 2016; Rice et al., 2016; T-Pederson et al., 2021; Wiggins et al., 2020). However, it is unclear how prevalence estimates differ at each time point (i.e., early childhood and adolescence), and early childhood predictors of adolescent wandering are largely unknown. Factors associated with adolescent wandering, like locations where they wandered, use of words to communicate, and recent intervention measures added by caregivers, are also largely unknown.

The first goal of this analysis was to describe parent-reported wandering in children with autism in early childhood and adolescence and identify early childhood factors associated with wandering only in early childhood and at least once in adolescence. A second goal was to examine, for adolescents who wandered, locations from where they wandered, overall communication abilities, and prevention and intervention measures added by their caregivers in the last 12 months.

It is important to note that the terms “wandering” and “elopement” are sometimes defined separately and other times used interchangeably in the literature. Elopement can sometimes include more intense examples of behavior, like running away from caregivers or bolting into the street. In this article, we used the term “wandering” to characterize leaving a supervised space and/or care of a responsible person to align with the National Autism Association (2022).

Data for this analysis were from the Study to Explore Early Development – Phase 1 (SEED1, 2006–2011) and the SEED Teen Follow-Up Survey (SEED Teen, 2018–2021). SEED1 is a multi-site case-control study of 2- to 5-year-old children ascertained through health and education providers via diagnostic codes/exceptionality criteria and a random sample of state birth certificate records. Caregivers completed the Social Communication Questionnaire (SCQ; Rutter et al., 2003), a screening measure that assessed their child’s likelihood for autism. Children completed the Mullen Scales of Early Learning (MSEL; Mullen, 1995), which assessed their early learning abilities. Children who demonstrated likelihood for autism on the SCQ (scoring 11 or higher, to maximize sensitivity in preschool children in the SEED sample; see Allen et al., 2007; Lee et al., 2007; Wiggins et al., 2007) or had a previous autism diagnosis completed a comprehensive developmental evaluation that included the Autism Diagnostic Interview – Revised (ADI-R; Lord et al., 1994) and the Autism Diagnostic Observation Schedule (ADOS; Gotham et al., 2007; Lord et al., 2000). Study group classifications based on an in-person developmental evaluation were autism, other developmental disabilities, and population comparison. Details on SEED1 can be found in Schendel et al. (2012) and Wiggins et al. (2015).

SEED Teen is a longitudinal follow-up of children who completed SEED1 when they were 12–16 years old. The goals of SEED Teen were to assess the health and healthcare needs of children enrolled in SEED1 as they transitioned into adolescence and to understand early childhood factors related to adolescent health outcomes. SEED Teen participants were recruited from four of the six original SEED1 sites: Georgia, Maryland, North Carolina, and Pennsylvania. The North Carolina site assumed responsibility for collecting survey data from participants in Maryland, North Carolina, and Pennsylvania. This analysis included adolescents who completed SEED1 and whose caregiver reported on the SEED Teen survey a previous diagnosis of autism given by a healthcare provider (n = 269). Of these, 258 (95.9%) had data on wandering at both time points studied and comprised the sample for these analyses. Both SEED1 and SEED Teen were approved by the Institutional Review Boards at each study site.

Among 258 SEED participants with autism included in this analysis, 50% (n = 129) wandered between 2 and 5 years of age and 14.0% (n = 36) wandered between 12 and 16 years of age. Characteristics of adolescents who never wandered (N = 117), wandered only in early childhood (N = 105), and wandered at least once in adolescence (N = 36) are reported in Table 1. The groups were similar in terms of demographic characteristics, except those who never wandered were more likely to have public-only insurance than those who wandered only in early childhood and sometime in adolescence. Those who never wandered had lower mean SRS-2 values (indicating fewer autistic traits), lower mean CBCL values (indicating fewer externalizing and internalizing behavior problems), and higher mean MSEL values (indicating more early learning abilities) than those who wandered in early childhood or at least once in adolescence. Adolescents who never wandered had higher mean VABS-2 adaptive skills scores than those who wandered only in childhood.

Compared to youth who never wandered, CBCL scores for childhood externalizing behavior problems were significantly higher for youth who wandered only in early childhood (adjusted prevalence ratio = 1.04; 95% confidence interval = [1.02, 1.06]; p < .01) as well as youth who wandered at least once in adolescence (adjusted prevalence ratio = 1.05; 95% confidence interval = [1.01, 1.08]; p < .01). This means that for every unit increase in CBCL externalizing symptoms (i.e., t-score), the likelihood of wandering increased by 4% in early childhood and increased by 5% in adolescence. Other early childhood characteristics were not associated with wandering at either developmental period (Table 2).

Among those who wandered at least once in adolescence (N = 36), more than half had wandered from a store, restaurant, playground, campsite, or other public place; about a third wandered from their own home and from school, daycare, or summer camp, respectively; and about a fifth wandered from someone else’s home. These categories were not mutually exclusive (Figure 1).

Among those who wandered at least once in adolescence (N = 36), 13 (36.1%) communicated using words easily, 15 (41.7%) communicated using words with trouble, and 8 (22.2%) did not communicate with words (compared to 76.9%, 20.5%, and 2.6%, respectively, among those who never wandered). The most commonly reported prevention/intervention measures added in the last 12 months in this group of adolescents were locks or alarms, followed by other barriers, an app or other phone feature, fences or gates, and tracking devices (Figure 2). These categories also were not mutually exclusive.

There are several key findings from this longitudinal analysis. First, we observed that half of caregivers reported that their child with autism wandered in early childhood, and 14% (one in seven) reported that they wandered in adolescence. Childhood externalizing behavior problems were significantly associated with wandering regardless of age. Public places were the most common locations from which adolescents wandered, and almost one quarter of these adolescents did not use words to communicate. Although adolescents most often wandered from public places, fewer caregivers recently implemented safety strategies away rather than near the home, like apps or other phone features or tracking devices. These findings offer important information for families, providers, and community leaders to identify children and adolescents with autism who may be at risk for wandering and implement measures to keep them safe. The following sections relay this information to be translated into pediatric and/or public health practice.