To examine the clinical characteristics associated with wandering in children with autism spectrum disorder (ASD), the impact on families, and how medical and educational professionals address wandering.
An anonymous, online questionnaire was distributed through autism-related organizations to parents of children with ASD. The questionnaire asked about demographics, developmental diagnoses, past wandering behavior, and impact of wandering on parents. It also asked about the use of electronic tracking devices, requested Individualized Education Program (IEP) modifications, use of restraints and/or seclusion to prevent wandering at school, and receipt of guidance about wandering. Parents were included if they lived in the United States and had a child aged 4 to 18 years with ASD who had previously wandered.
A total of 1454 parents who completed the questionnaire met the inclusion criteria. It was found that 22.4% of the children wandered from their home or yard and 24.6% from a public place more than monthly. Wandering concerns affected 73.3% of parents' decisions to let their child spend time with friends or family in their absence. Furthermore, 48.6% and 58.7% of parents were moderately/very worried about their child wandering from home or yard or a public place, respectively. Over half of the parents (54.9%) parents requested IEP changes to address wandering. Only 33.3% of parents had previously received any counseling about wandering.
Children with ASD and a history of elopement wandered at a fairly high frequency. Wandering concerns increased worry and anxiety for parents and negatively impacted household routines. The medical community is not adequately educating families about these risks. Pediatricians must become more aware of available prevention and mitigation strategies.