Parental Perspectives on Water Safety Challenges for Children with Autism

Barbara D. Cosart, MLIS, MPH, CHES
Stewart R. Williams, MBA
Karla A. Lawson, PhD, MPH
Molly B. Johnson, M.AmSAT, PhD

Among children with autism, drowning is the leading cause of death through age 14. Autistic children are more likely to drown than neurotypical children. Attributes, such as wandering, sensory issues, impulsivity, and a limited sense of danger, could increase risk. In addition, autistic children often have trouble participating in structured group activities, such as swimming lessons. The purpose of this study is to better understand water safety experiences of parents of children with autism.

Parents of children with autism were asked to complete a brief online survey and to participate in a focus group about their water safety experiences. Six focus groups consisting of 2-6 participants, and one individual interview were held. Focus groups and interviews were recorded and transcribed by the study team. The codebook, created using both deductive and inductive approaches, was revised throughout the study period to aid in thematic analysis of the participants’ contributions.

Twenty-one parents participated in a focus group or interview (95% female, 5% male, average age 44 years). Participants were parents of 1-3 children with autism (n=25, 72% male, 20% female, 8% Trans/non-binary, average age 11 years). Parents reported that 43% of the children had completed multiple years of swim lessons; 33% had completed multiple sessions; 14% had attempted, but not completed more than one session; and 10% had never attempted swim lessons. Several major themes were identified that were near-universal among participants. Parents viewed the experience and training of swim instructors teaching autistic children as being of paramount importance. They highlighted characteristics such as impulsivity, elopement, poor sense of danger, and sensory and communication challenges that affect risk of drowning and participation in learn-to-swim programs. Parents pointed out barriers in accessing adaptive swim lessons due to scarcity of experienced instructors and high cost of these lessons, and that they have often received inadequate information about water safety in the context of autism. Parents indicated that autistic children have uniquely different characteristics and needs presenting complexities in scheduling and adjusting activities around therapy. Parents contributed valuable insight into what would make a learn-to-swim program successful for their autistic children. This includes instructors who have a deep understanding of autism, tailored instruction according to their child’s unique sensory, behavioral, and motivational needs, and a sensory-friendly environment with few distractions.

Water safety needs to be elevated in importance for families of autistic children. Information on drowning risk and prevention should be proactively provided. Barriers to adaptive swim lessons such as cost, scheduling, and availability need to be addressed. More training opportunities need to be provided to swim instructors to improve teaching children with complex needs, such as those with autism.

Identify several individual characteristics that are prevalent among autistic children that contribute to a higher risk of drowning
Identify several prevalent challenges to water safety faced by families of autistic children
Identify barriers and facilitators to successful learn-to-swim instruction for children with autism