Lessons learned from mothers: Parenting perspectives for preventing pediatric unintentional injuries related to autism

Abstract

Objective:

Autistic children have higher unintentional injury risk than typically developing children, but little is known about how parents struggle and succeed in keeping their autistic children safe from injury. Qualitative methods evaluated the concerns of unintentional injury prevention experienced by mothers of autistic children and the impact of these strategies on maternal quality of life.

Methods:

Fifteen mothers (M_age= 37.80 years) of autistic children participated in a semi-structured interview addressing child characteristics, injury concerns and experiences, and injury prevention strategies and resources. Interviews were transcribed and coded in NVivo following a systematic, inductive approach.

Results:

Mothers of autistic children have significant concerns regarding child injury prevention, leading to increased feelings of parental responsibility and need for constant supervision of their autistic child. The sustainability of safety strategies that encompass supervision, such as proximity and control, were concerning to mothers. The dominant role of supervision leads to reports of exhaustion and increased cognitive load. Despite this, the mothers reported these efforts were necessary to prevent injury in their child.

Conclusions:

By evaluating the lived experiences of mothers with autistic children, this study identified maternal responsibility and supervision as the most critical and most demanding aspects of child injury prevention. Clinicians working with families who have autistic children should consider encouraging parents to proactively develop effective and practical safety interventions to reduce child injury risk as well as reducing caregiver stress.

Autism Spectrum Disorder (ASD) is a disorder that involves challenges in social communication, repetitive behaviors, restricted interests, and oftentimes sensory sensitivities (American Psychiatric Association, 2013). Due to traits associated with ASD, “parents/caregivers” (henceforth, “parents” for the purpose of the present study) of autistic children face unique challenges while caring for their children (Falk et al., 2014; Shattnawi et al., 2021). One common concern among parents is protecting their children’s safety by preventing unintentional injuries (Guan & Li, 2017), as behaviors associated with increased risk of injury are common among autistic children, including elopement, hyperactivity, communication difficulties, and sensory seeking behaviors. Concordant with parental concerns, empirical research suggests autistic children are at greater risk of unintentional injury compared to typically developing children or children with other developmental disorders (Cavalari & Romanczyk, 2012; Jain et al., 2014; McDermott et al., 2008; Authors, 2025; Pardej & Mayes, 2024). In fact, some estimates suggest autistic children are approximately three times more likely to die from an unintentional injury compared to non-autistic children (Gillberg et al., 2010; Guan & Li, 2017a; Mouridsen et al., 2008).

Injury prevention for families with autistic children is complex not just because of behavior patterns common among autistic children, but also because traits associated with ASD may render some traditional injury prevention strategies, like teaching safety skills, less effective (Dixon et al., 2010). A systems theory approach to injury prevention, such as the Swiss Cheese Model (Reason, 1990; Reason et al., 2006), is helpful for conceptualizing the causes of injury and developing effective interventions (Pugliese & Barton, 2023). This model proposes that various components within a system interact to lead to higher injury risk situations. Thus, injuries occur as a result of multiple layers of failures in a system rather than any single event or cause (Pugliese & Barton, 2023). Through this lens, injury risks for autistic children may occur from a combination of the child’s decisions and behavior, the parents’ decisions and behavior, the environment the child is engaging within, and the dynamic factors present in that environment (Reason et al., 2006). Intervention at any single layer could avert the unwanted consequence of a child experiencing an injury. This paper focuses on one of the most significant aspects of the system that impacts injury risk among autistic children, the parent (or another caregiver) supervisor.

Parent supervisors can prevent child injury, and previous research reports that parenting strategies differ for parents of autistic children compared to non-autistic children (Larson, 2010; O’Nions et al., 2018). For example, parents of autistic children tend to increase their quantity of supervision compared to parents of non-autistic children (O’Nions et al., 2018). Among families with typically developing children, injury risk is reduced when supervision is increased (Morrongiello et al., 2004). Corresponding findings among families with autistic children are lacking, and both the specific types of supervision parents of autistic children implement and their perception concerning the efficacy of those strategies are poorly understood. Also unclear is whether the increased quality and amount of supervision apparently used to protect autistic children from injury has secondary, less positive impacts. Parents of autistic children experience more stress and report facing more challenges compared to families with non-autistic children (O’Nions et al., 2018). Providing consistent, high-quality supervision may represent a substantial caregiving stressor for parents of autistic children (Iadarola et al., 2019), especially if this supervision appears to be ineffective.

Given the high injury risk among autistic children, and the caregiver challenges involved in maintaining child safety, this study explored the lived experiences of mothers of autistic children to understand their responsibilities, concerns, and perspectives related to child injury prevention. We implemented a qualitative approach to data collection, as we viewed it as the best methodology to explore the parenting layer of injury prevention for families with autistic children and identify relevant nuanced and context-specific perceptions, challenges, and stories within mothers’ lived experiences. We focused on children between the ages of 3 and 12 years, with the minimum age representing a developmental stage when autism is detectable by most providers (Lord et al., 2006), and the maximum age representing a developmental stage when parental supervision remains important to maintain safety among many children with autism, before they may begin to transition to somewhat greater adolescent independence in behavior and decision-making.

Method

Participants

Parents of autistic children were recruited via letters, emails, and phone calls to individuals included in a database of families previously expressing interest in research, as well as by word-of mouth, social media, and community advertising. Inclusion criteria required parents to be fluent in English, have the ability to engage in a 45 – 60 minute interview using a virtual platform, be over the age of 21 years, and have an autistic child between the ages of three and twelve with a diagnosis from a licensed professional. No exclusion criteria applied. During recruitment, parents were informed that they would receive a $40 gift card for their participation; compensation was provided following the interview.

Semi-structured virtual interviews were completed with 15 mothers of autistic children as part of a larger study. Interviews took place from February 2021 to August 2021. No participants were lost following consent. Following qualitative research recommendations, the final sample size was determined using theoretical saturation, defined as a point in data collection where sufficient data were collected for the conceptual theories to be comprehensive and well-grounded (Glaser & Strauss, 2017; Sandelowski, 1995). All study protocols were reviewed and approved by the University of Alabama at Birmingham’s Institutional Review Board and all participants provided informed consent prior to their participation.

Materials and Procedures

Mothers first completed brief online questionnaires providing socio-demographic characteristics about themselves, their child, and their family. Following completion of the questionnaire, mothers participated in a 45 – 60-minute semi-structured interview over Zoom by trained female research assistants (AM, BP, CM) with bachelor’s degrees and doctoral-level training in clinical or developmental psychology. Participants were free to participate from their preferred location; most were at home. Researchers conducted interviews from either their home or university office. All interviews were conducted in private and secure locations without the presence of non-participating individuals.

Interviewers followed a guide created through collaboration between a Master’s-level graduate student with expertise in injury prevention and autism, a doctoral-level expert in public health and injury prevention, and experienced doctoral-level academic clinicians with expertise in ASD. There were no relationships or personal connections between interviewers and participants prior to the interview. The interview guide included 24 questions related to child characteristics, injury concerns and experiences, and injury prevention strategies and resources. For this study, responses from 11 of the questions were included in the qualitative analysis (see Table 1), and a standardized semi-structured interview approach was implemented to allow flexibility for participant elaboration and clarification throughout the interview. At the start of the visit, interviewers introduced themselves by name, shared that they had clinical experience working with autistic children, and offered a standardized description of the study’s objective. Participants were aware that the goal of the interviews was to learn more about opinions and perceptions related to their family and their child’s accidental injuries. It was emphasized that interviewers viewed the participants as the expert, not themselves as an interviewer or researcher. All interviews were recorded for transcription and all interviewers took their own notes for additional reference. After transcription, interviews were uploaded into NVivo, Version 14 for data analysis. Following interviews, participants were not re-integrated into the data analysis process for review of transcripts or conducting of repeat interviews. However, community advisors, including one participant from our sample and two advocates affiliated with the University Center for Excellence in Developmental Disabilities, were consulted to provide feedback on the presentation of the identified themes, as well as to offer insights regarding the accurate representation of our findings and generalizability of our discussion within the autistic community.

Table 1.

Semi-Structured Interview Questions

Topic	Question
Child Characteristics	What is your biggest area of concern for your child right now?
Injury Concern	What are some of your concerns or fears related to accidental injury? How do you see these related to your child’s autism symptoms? In other words, how do you see your child’s ASD impacting your fears and concerns relevant to accidental injury? How might these concerns be different if your child was typically developing or did not have autism? Based on your experiences parenting your child, are there specific symptoms or behaviors he/she demonstrates that you feel are associated with higher injury risk? Or lower injury risk?
Injury Prevention Resources	Are you aware of any resources or strategies for preventing accidental injuries in individuals with autism? What do you like about those resources/what do you not like? What resources are missing that would be helpful to you?
Safety Behaviors	Tell me about the current strategies you use to keep your child safe. How effective are these strategies? What are some challenges to maintain these strategies? In your experience, are there safety rules that most parents follow but that don’t apply very well for children with autism?

Data Analysis

Qualitative data analysis was conducted using a systematic and inductive approach based on grounded theory (Charmaz, 2006; Green et al., 2007; Kuckartz, 2019). A coding guide was developed systematically through an intensive evaluation of the qualitative data using an open coding phase (Kuckartz, 2019). The codebook was established through the process of data immersion, which included reviewing the interviews and notes, along with consulting members of the research team. Following creation of the established codebook, each transcript was individually and independently coded by three authors (AM, BP, CM). The percent of agreement for each individual transcript ranged from 86% to 92% across the sample of interviews. Coders met regularly to discuss discrepancies and establish consensus. During the coding process, codes were used to select, sort, and classify the data systematically for further interpretation within an analytic framework (Charmaz, 2006). Themes were established based upon the systematic integration of prior research, relevant theory, and codes within the data. A thematic analysis was then conducted to yield the following results.

Results

Participants included 15 mothers (M_age=38.27, SD=5.15) who completed interviews related to their autistic children (M_age=7.11, SD=2.82, 93.33% Male). Participant characteristics are displayed in Table 2. The results are organized into four themes identified in the qualitative analysis: 1) maternal concerns related child injury prevention and autism, 2) maternal responsibility for safety, 3) the role of supervision on child injury prevention, and 4) the emotional impact of child injury prevention strategies on mothers. These themes were derived from the most prominent coded responses across maternal interviews based on the questions outlined in Table 1. Figure 1 displays the organization of the identified themes and subthemes. The included quotes throughout the manuscript were derived from mothers across the included sample and include the age in years and sex of their autistic child.

Table 2.

Descriptive Characteristics about Participants and their Children

	Mean (SD)	Range
Child age (years)	7.11 (2.82)	3.41 – 12.05
Age at ASD diagnosis (months)	39.67 (23.69)	23 – 84
Parent age (years)	37.90 (5.16)	29.53 – 46.24
	Frequency	%
Child male gender	14	93.33
Child race/ethnicity
White and Non-Hispanic/Latino	13	93.33
Black and Non-Hispanic/Latino	1	6.67
White and Hispanic/Latino	1	6.67
Mother education
High school graduate	2	13.33
Some college	3	20.00
Associate’s degree	2	13.33
Bachelor’s degree	3	20.00
Master’s degree	4	26.67
Professional degree (PhD, MD, etc.)	1	6.67
Other Diagnoses
Anxiety Disorder	2	13.33
ADHD	5	33.33
Developmental Delay	7	46.67
Intellectual Disability	1	6.67
Learning Disability	1	6.67
Obsessive Compulsive Disorder	1	6.67
Sensory Processing Disorder	1	6.67
Speech and Language Disorder	8	53.33
Tourette Syndrome	1	6.67
Vision Problems	3	20.00
0 siblings living at home	7	46.67
1 sibling living at home	6	40.00
2 siblings living at home	2	13.33
Two parent household	12	80.00
Single parent household	3	20.00

Note: N = 15

Figure 1.

Thematic Analysis of Maternal Perspectives Related to Unintentional Injury Prevention among Autistic Children

Note: Themes and sub-themes identified through data from semi-structured interviews conducted with 15 mothers of autistic children; ASD = Autism Spectrum Disorder

Theme 1: Maternal Concerns Related to Child Injury Prevention and Autism

The mothers of autistic children in our sample reported that they face many concerns as a parent of an autistic child, but the concern for injury and safety emerged consistently across participants as one of their most prominent concerns: “The biggest fear or concern is, well my mind plays out endless, endless scenarios of injury” (5-year-old male child [“5M”]). Many mothers described their worries about child safety as a constant presence in their life: “Every day, pretty much every moment, there is the thought of safety. That’s kind of our top priority” (5M); “It never goes away…It becomes just a constant way of life” (12M). Mothers perceived that issues surrounding child injury prevention were elevated beyond those of typically developing children because of their child’s autism: “There’s no question that it’s autism related” (6M); “I wouldn’t feel that way if he wasn’t autistic” (6M). Similarly, mothers were not surprised when asked to respond to the statement that autistic children are at a higher risk for injury: “If you live an autism family life, that would seem obvious” (5M).

Specific characteristics or symptoms related to their child’s autism appeared to heighten injury risk in their autistic children. Many mothers identified their child as having a lack of danger awareness, “They don’t seem to have a fear of danger” (11M), and spatial awareness “…there is a larger discrepancy between the awareness that a neurotypical child may have about their surroundings, about spatial awareness and…understanding of the concept of danger…it’s so abstract to them” (5M). This reduced understanding of danger and spatial awareness, mothers felt, may inhibit their child’s ability to identify dangerous situations, heightening their risk of engaging in dangerous situations or behaviors. Specifically, mothers identified that their children often engaged in dangerous play behaviors, “They don’t understand the concept of rough housing…that that can lead to an injury, no matter how many times we go over it” (5M). As identified in this comment, the combination of a lack of danger awareness, dangerous play behaviors, and challenges with comprehending, retaining or implemeningt safety lessons collectively heightens mothers’ concerns for injury.

An additional characteristic mothers identified that related to both their child’s diagnosis and increased risk of concern for injury was their autistic child’s communication challenges effectively, “In scenarios of him feeling stressed, he’s as nonverbal as one that is nonverbal. You would not know that he has words that he can say in those situations. He’s not gonna use them.” (6M). The range of communication challenges that may be experienced by autisitc children may impact their ability to verbally or effectively communicate when they are in a dangerous situation. These communication challenges may further compound maternal concerns. Together, these commonly identified concerns may directly relate to characteristics of ASD, comorbidities and increase maternal concern for injury risk.

Theme 2: Maternal Responsibility for Safety

Participating mothers regularly touched on the importance of being the safety net for their child. With injury and safety being a constant maternal fear, maternal responsibility emerged as a prominent theme: “I think we as parents, that’s our responsibility for the most part” (6M); “We have to be his eyes” (11M); “They don’t understand what that is so it kind of all falls on me” (3M). The increased sense of maternal responsibility for safety was largely related to four domains: 1) autistic children’s difficulties in understanding the concept of danger, 2) the ineffectiveness of understanding and teaching safety strategies, 3) lack of information dissemination, and 4) lack of public awareness.

The first two domains may be directly related to their child’s diagnosis of autism and associated traits. Mothers reported their child had difficulty understanding the general concepts of safety and danger: “It can be a little harder to explain safety awareness and danger and the consequences of actions and choices. Sometimes it can be really hard to have that back-and-forth dialogue” (5M). This lack of understanding may be related to the second domain, the ineffectiveness of autistic children’s understanding of the safety strategies parents attempt to teach and implement: “We’ve been trying for years... When we get to a stop sign, we’re preaching stop, look, listen, then go. He doesn’t stop, look, listen, or go. I mean, he doesn’t pay attention” (12M); “I just feel like there are things that are easier for parents of typical kids to just say ‘Don’t touch that, it will burn you. Don’t open that because this could happen. Don’t talk to strangers.’ There are a lot of concepts that are way over his head, that he wouldn’t get if you tried six dozen ways to explain it to him” (6M). As a result, mothers consistently referenced their responsibility to create a safe environment, provide supervision, and implement strategies to prevent injury: “So I know I’m there to catch it before it becomes an issue” (5M); “A lot of it’s just creating an environment that’s safe so he can have as much [autonomy] as he can” (4M); “I’m trying to do as much as I can to keep an accident from happening” (10M).

The final two domains, lack of information dissemination and lack of public awareness, represent environmental factors that impact the participants’ approach to parenting and supervision. Lack of disseminated information regarding safety protocols for autistic children within their environment emerged as a recurring rationale pertaining to mothers feeling responsible for their child’s safety: “It seems like any safety protocols beyond your home are still going to have to be things that you are implementing for your child. And in most situations, you are actually having to advocate for other places to try to have some sort of protocol in place, or some understanding of what a child may need, safety wise” (5M). Beyond the maternal responsibility to keep their child safe in public through safety strategies, mothers also feel responsible for learning about safety behaviors due to the general lack of information and knowledge that is available: “I’d never heard of elopement. That was a brand-new word for me when it came up. These are the things that we see as far as, you know, maybe some safety concerns. Your child may run away, your child may have no fear, they may, you know… But when you have a child with autism you don’t know how to protect them, because you don’t, you have no idea like I said what’s going to come at you” (5M).

Mothers also expressed a need for more public safety awareness, which can decrease the pressure of feeling responsible for their child’s safety: “If there could be a shift in the public mentality of not just oh, we know what autism is, but truly understanding it and accepting it and then trying to make the world a lot safer for families too, and that safety can be physical, but that safety can be mentally and emotionally” (5M); “I think a lot of it just comes from awareness, general public awareness of what to look for in kids with autism in an emergency, especially in an emergency situation” (6M). Both public awareness and information dissemination can increase safety for autistic children and thus, decrease maternal responsibility and individualized efforts needed to keep their autistic children safe.

Theme 3: The Role of Supervision on Child Injury Prevention

Mothers in the sample consistently identified supervision as their primary injury prevention strategy. They felt that supervision was effective for reducing child injury risks, “[His injuries are] never anything because I don’t usually let him out of my sight that often, you know?” (11M). Phrases encapsulating the concept of constant supervision were frequently offered: “There’s never a moment usually that the child is unsupervised” (5M); “My typical safety strategy is just, like, being with them all the time” (3M); “You also can’t, like, turn your head for even a second . . . It’s constant, constant, constant” (4F). Mothers specifically mentioned certain situations where they felt supervision was essential to ensure their child’s safety, including near water: “I of course don’t take my eyes off of him when he’s in the pool” (6M); “I sit between him and the pond” (4M), and in situations with elopement risk, “I’m always around him with a hand on him, and I’ve never had an accident to where, like, he has even gotten away from me” (3M). Additional situations noted to require intensified supervision included play time, at the park, climbing, and activities where the child exhibits gross motor difficulties, such as climbing stairs.

Mothers in our sample often compared both the quality and quantity of their supervision to supervision required of non-autistic children. Statements such as, “You’d worry about your typical kid but it’s just the extra 10 steps that you don’t have to do with them that you have to do if they’re autistic” (6M) were prevalent throughout interviews. Four subthemes emerged that specify how mothers perceived supervision plays a role in child injury prevention for their autistic children: 1) hypervigilance, 2) proximity, 3) control, and 4) teamwork.

Hypervigilance

Hypervigilance in supervision, conceptualized as an elevated alertness and constant fear or state of evaluating danger, emerged consistently across interviews: “From sun-up to sun-down…every turn I took there was another risk…it became…the primary and sole focus prior to any activity. Working out what the risks are…trying to always be multiple steps ahead…have that foresight” (5M). Mothers labeled themselves as “hoverers” or “helicopter moms”: “I’m definitely a helicopter mom…I’m afraid something’s going to happen because he’s not aware that it’s dangerous” (6M). Mothers in our sample expressed the belief that their vigilance was greater than mothers of non-autistic children: “Not to discount the vigilance and awareness of typical parents, but most parents of, say, autistic teens I’ve spoken with, they’re not in any way, shape, or form, unaware of what their child is doing at any particular time” (5M) and “I have to watch their every move. I can’t just hang out at a park on the sidelines with the moms, you know, I have to really be involved with him, and that’s everywhere I go” (3M).

Proximity

Mothers commonly reported that they stay in close proximity to their autistic child to prevent injuries or to treat an injury if one were to occur. For example, one mother stated she was “…always within arm’s reach” (5M) and another stated a need to be right by their child at all times, “You have to get right there and play or watch with him” (12M). This need for proximity was prominent in almost every situation and environment, including the home: “…we don’t let him go very far from us, even in the house we’re always within earshot of him” (5M); outside: “I have to ride bicycles with him to stay right there with him to keep him out of danger” (12M); in public places: “I’m letting him go ahead of me you know, maybe one or two three feet, but I’m right behind him…I’m doing everything with him”(3M); and new environments where the child might have limited danger awareness: “He doesn’t know his surroundings…when there could be danger…I have to be there. I have to hold his hand” (4M). The need for proximal supervision was mentioned in the context of several potentially dangerous situations, including 1) where there was risk of elopement, “If we’re ever out somewhere, crossing the street or parking lot, yes, it’s holding his hand or the back of his collar” (12M); 2) around water, “…if he’s touching the water, somebody around me better be touching his shirt or his arm because [drowning] can happen in the blink of an eye” (6M); and 3) in potential choking situations, “I had to grab him, turn him upside down, smack him. It was legit choking. He probably would have gotten it up, but I was right there so we didn’t wait” (6M).

Control

Mothers commonly indicated tailoring their parenting approach by attempting to control either their child’s environment or the contextual situation to reduce the possibility of their child getting injured. One mother explained, for example, “I try to just stay with him or within earshot of him all the time to try to prevent that from happening so other than like a break or something major I kind of have the rest under control” (5M). Some mothers stated that having control over the environment also reduced their concern for injury, “I don’t really worry about those things because I control that environment” (3M). Although mothers felt control provided a safety net while their child was young, many referenced the future and how they may need to relinquish control over their child’s environment as they develop. One mother reported, for example, “He’s eleven now and I’m trying to work on letting go a little more” (11M). Another stated: “I want it to be in a controlled environment, but I also want him to learn a little bit from his environment because I know I’m not going to be there 24/7 so I want to give him as much autonomy as I can and help him stay safe” (4M). Lack of control for their child’s future safety appeared to instill concern in some mothers: “My thoughts are always moving forward and what the future is going to look like and what it will be when he’s not there with a caregiver necessarily. It’s a fear I’m sure for any parent when your child is in a situation or scenario and you’re not there. And you don’t have any control.” (5M).

Teamwork

The sample of mothers frequently mentioned the importance of teamwork with partners and other family members to ensure supervision was provided for their autistic child. Several mothers used the term “tag team” to discuss the constant supervision shared with their partner to ensure child safety. One mother explained, “His father and I have this kind of choreographed dance routine that we just have down pat. Once you enter a certain part of the house, exit a certain part of the house, doors are shut, doors are locked. There’s just a communication there. When you have anything going on from when you need to step outside of the house and you need someone to come back behind you and lock the additional lock” (5M).

Theme 4: The Emotional Impact of Child Injury Prevention Strategies on Mothers

Throughout the interviews, mothers in our sample continuously detailed the challenges they faced when supervising and enacting other injury prevention strategies for their children. These duties appeared to have significant impact on mothers’ day-to-day experiences, stress, and overall quality of life and well-being. Three subthemes emerged that identified unique feelings and experiences mothers of autistic children endure related to injury prevention and supervision: 1) effort and exhaustion, 2) cognitive overload, and 3) isolation.

Effort and Exhaustion

Mothers discussed that continuous increased effort was needed to effectively meet the demands of their child’s safety and injury prevention, which subsequently led to feelings of exhaustion. One mother explained, for example, “It gets tiring… it’s like finding that balance of safety versus doing day-to-day things, like yes, do I want to watch him 24/7 but I also need to cook, so it’s finding balance” (4M). As mothers described the effort needed to keep their autistic child safe, they emphasized the exhaustion from the role, “You’re just worn out…the whole day is exhausting because you’re constantly worried. I’m always on edge…” (6M). Another mother mentioned the various resources she had access to and sympathized with mothers of autistic children without those resources, “It’s exhausting and takes a lot of mental forethought, and I can’t imagine, parents that are, don’t have the resources or are super young. I mean I’m a middle-aged mom so I have a lot of tools in my toolbelt to use, and I know that a lot of people don’t address it that way and I can’t imagine how stressful it is because it’s a lot” (6M).

Cognitive Overload

Mothers also mentioned the cognitive load of keeping their children safe, “I have to overthink everything. Sometimes you feel like you overanalyze, but it’s really for the safety of your child. The best way to be effective…you miss out on social things, but it’s not that big a deal…your child comes first” (7M). Mothers suggested this load of constant supervision impacts their mental health, creating feelings of stress, loneliness, and isolation, “The stress levels of special needs parenting remains so close to red zone that I’m just at the point where anything can be thrown at me and it would still be there,” (5M) and “I could see how it could really wear on somebody’s mental health... like I said when somebody’s hands are on the wheels at all times, I mean it’s exhausting” (6M).

Isolation

Finally, mothers of autistic children emphasized the impact of protecting their children’s safety on their ability to obtain trustworthy help, leading to feelings of isolation due to their focus on their autistic child, “It’s really hard to trust others to keep him safe, you know?” (11M); “I don’t want to send her anywhere, because people don’t get it” (4F). Because mothers experienced difficulty trusting others to keep their child safe, they felt they were unable to leave their child, or when they did leave their child they remained anxious for a safe return, “It’s still always just like a [sound indicating discomfort] for the next couple hours when someone else has him, because they’re just not… mom…especially the grandfather…they’re men, so they’re not quite as…motherly. So…one of my other concerns is just having to leave him with anyone else, and again some of that’s just me being extra paranoid.” (6M)

Despite the range of strains and challenges discussed, mothers perceived that their efforts and strategies were necessary and worthwhile, and that they would keep providing these safety measures to keep their child safe and protected from injury. “I mean it’s all necessary and I will do it to the nth degree to make sure he’s safe” (6M); “It’s my honor and privilege to do it… He deserves every bit of my attention and he’s not taking from me” (6M).

Discussion

This study conducted semi-structured qualitative interviews with mothers of autistic children to examine their lived experience of concerns, strategies, and perceived responsibilities related to unintentional child injury prevention. Results suggest mothers of autistic children experience unique and significant concerns regarding injury prevention for their children. Consistent with prior research indicating autistic children have a higher injury risk compared to typically developing children or children with other developmental disorders (Jain et al., 2014; McDermott et al., 2008), mothers in this study reported that they believed their child had a heightened injury risk and expressed several concerns about child safety.

In fact, fear for child safety related to unintentional injuries was among participating mothers’ most significant concerns, representing a stressor that mothers constantly worried about and constantly worked to mitigate. The participants suggested their concerns were directly linked to their elevated perceived risk of child injury and the characteristics of their child’s diagnosis, including lack of danger awareness, difficulty understanding safety strategies, and lack of spatial awareness. These factors impacted the type of safety prevention strategies mothers reported using and the intensity and consistency of applying those strategies, as well as contributing to the perception of heightened parental responsibility for keeping their child safe.

From a systems theory perspective to injury prevention, injuries result from failure across multiple interacting factors within a system (Pugliese & Barton, 2023), and interventions at any level can reduce the likelihood of injury. The present paper focused primarily on the parenting aspect of the framework and examined ways in which parenting and parental supervision can protect autistic children from injury. Specifically, mothers shared their perceptions on the critical role of parental supervision for their autistic children and described the worry that occurs, as well as how gaps in their own parental supervision might increase risk of injury. Mothers in the study also identified other aspects of the system contributing to child injury risk. For example, they mentioned concerns at the individual child level (i.e., traits associated with ASD) and at the community environment level (i.e., school and home settings) that impacted their supervision strategies and children’s safety. Individual level concerns are further explored in a separate manuscript based on the same study sample (Authors, 2025).

The role of direct caregiver supervision was mentioned most prominently by mothers as a prevention strategy. Injury prevention scholars conceptualize supervision as involving three dimensions: attention, proximity, and continuity (Saluja et al., 2004). Attention and continuity were referred to frequently by the mothers in terms of hypervigilance; the mothers indicated they constantly attended to their child and their child’s behavior, keeping their eyes on their child at all times. Consistent with the third dimension of supervision, proximity, mothers reported constantly staying close to their child to preserve safety. Many mothers attributed their exceptional supervision to the successful prevention of injuries in their autistic children, especially in environments in which perceived risk of injury was high, such as near water or while playing outside. Mothers also reported their efforts to control their child’s environment as a safety strategy. They accomplished this by planning ahead and removing opportunities for injury.

The strategies reported by mothers of autistic children in this sample generally overlap with strategies used by parents of typically developing children (Ablewhite et al., 2015). However, one notable difference emerged: teaching safety skills emerged as a more complex and nuanced approach for the participants than anticipated. While mothers of non-autistic children view teaching safety lessons as a key aspect of child safety promotion (Ablewhite et al., 2015), mothers in this study described attempts to teach lessons (e.g., explaining stop signs) but perceived little success with this strategy. Many mothers described their child as not retaining or understanding information appropriately, resulting in a lack of confidence in the effectiveness of teaching safety strategies to their children. Evidence for the effectiveness of teaching safety strategies to autistic children is limited. A meta-analysis on safety skill interventions for autistic children, adolescents, and young adults noted promising, yet limited, evidence on the effectiveness of targeted safety interventions on abduction prevention, seeking assistance when lost, fire safety, and household safety (Wiseman et al., 2017).

The desire to teach children independence and still keep them safe presents a delicate challenge for parents, especially parents of autistic children. Previous research demonstrates potentially harmful effects of relying on safety rules alone for child injury prevention (e.g., Morrongiello et al., 2004a; Morrongiello et al., 2004b; Morrongiello et al., 2014; Peterson et al., 1996; Peterson et al., 2002). Rather, this literature strongly supports a combination of environmental modifications, supervision, and verbal instructions along with safety rules. In this context, teaching safety strategies is one option for mothers of autistic children to consider in conjunction with supervision, and these strategies should be viewed as part of a broader, multi-layered approach to child safety. For families of autistic children, it may be especially important for parents to consider their child’s unique developmental profile and use a combination of tailored teaching, physical safeguards (e.g., child locks), and ongoing assessments of the child’s understanding of rules and capabilities to understand and obey them.

Parental emphasis on supervision may also unintentionally limit practice opportunities for children to gain and grow independence in safe functioning within their environment. For instance, some situations, such as playing near a body of water, require active teaching and intensive monitoring for safety, other situations, such as playing in a safety-proofed family room, require much less intensity of supervision. Applying the same level of intensity of supervision across all situations is illogical and may actually limit opportunity for children’s natural exploration and incidental learning of risky and safe behaviors. Further, relying heavily on supervision requires more time and effort from parents and could contribute to and exacerbate the stress, loneliness, and isolation expressed by the mothers in our study and confirmed by previous research (Iadarola et al., 2019; O’Nions, 2018a). Parental time and energy are finite and given the range of tasks and mental load that are required of parents of autistic children, reducing a need in one area could release time and energy for other goals or needs.

Clinical Implications

Our findings build upon existing research around injury prevention, especially for high-risk groups such as autistic children (Schwebel et al., 2023). Despite being highly vigilant and using various safety strategies, the mothers in our study still felt deeply concerned about their children’s risk of injury due to factors they perceived to be beyond their control. This consistent worry, and their constant effort to keep their children safe, created stress in parents’ daily lives and may have impacted their mental health and well-being. These results highlight the need for broader, coordinated approaches to address child injury prevention through strategies that not only increase children’s safety via parental strategies but also improve autonomy and independence in autistic children as it pertains to keeping themselves safe. Such strategies will ultimately benefit the mental health and well-being of mothers as well as keeping children safe. Using models like the Swiss Cheese Model (Reason, 1990; Reason et al., 2006), we suggest that combining safety efforts across systems, including in the home (e.g., partner support) and in the community (e.g., recognition of the demands of parenting an autistic child), can help reduce injuries while also easing sole responsibility on mothers. Consideration of family size, other caregivers in the home, and sibling dynamics may additionally be worth noting when considering intervention options. The mothers in this study consistently provided high levels of supervision, potentially partially due to variable support at the home and community levels.

Practitioners can play a critical role in addressing these layers of influence on injury risk with their patients. Clinicians working with autistic children and their families can begin by discussing strategies the family may already be using for injury prevention and consider whether these strategies are improving and/or limiting family and child well-being and functioning. Working collaboratively within the family system, clinicians can help identify potential targets for intervention: the child’s decisions and behavior, the parents’ decisions and behavior, aspects of the environment and community the child exists within, and the interacting factors present in those system components.

At the child level, practitioners can assess the developmental appropriateness of injury prevention strategies and incorporate psychoeducation on ways to adapt strategies as their autistic child ages and develops. Suggested adaptations might include utilizing visual aids and simplifying safety instructions based on the developmental and language/communication level of the child. Additionally, an emphasis on increasing functional independence for autistic children regarding safety behaviors should be prioritized, as it can alleviate perceived parental responsibility. For example, when developmentally appropriate, clinicians can utilize safety-oriented social stories with children and families and encourage practicing safety lessons at home to facilitate an appropriate level of onus in autistic children to learn and adopt certain safety skills (Qi et al., 2018). Further, autistic children might respond well to clearly communicated safety rules and routines set in the home, as they often possess a strong desire for sameness and rule-following. Clinicians may utilize this tendency and an overall understanding of cognitive styles of autistic children as assets in teaching safety awareness. If developmentally appropriate and taught and enforced in effective ways, application of safety rules in the autistic child’s typical environments may be successful (Wiseman et al., 2017).

At the parental level, clinicians can guide parents in selecting supervision techniques based on evaluating their child’s risk behaviors and actual risk present in the environment, rather than relying on perceptions of risk that may or may not be fully accurate. For example, for a family with an autistic child who exhibits elopement behavior, parental supervision can occur differently when their child is content playing video games at home versus when their child is grocery shopping with the family. For families concerned about the risk for wandering and elopement, clinicians can consider applying a recently established evidence-based intervention targeting elopement in autistic children – Function Based Elopement Treatment (FBET; Scheithauer et al., 2021). The FBET protocol emphasizes our above suggestion by teaching parents how to select and apply the best elopement-oriented supervision techniques based on an evaluation of their child’s risk tendencies in the context of their immediate environment. Clinicians can also address elopement by talking with families about the utility of monitoring technology (e.g., GPS tracking), which has been shown to protect the well-being of autistic children while alleviating the emotional stress that elopement tends to place on families (McLaughlin et al., 2020).

Finally, at the community level, our participants emphasized a need for increased public awareness of injury risks in autistic children through information dissemination, as well as improved engineering of community environments to address safety concerns. For example, efforts to construct outdoor spaces to maximize safety through the use of physical barriers such as fences and functional latches could improve accessibility in community settings like parks and playgrounds. Further, awareness of wandering and elopement might encourage vigilance in the community in support of the child and family.

Limitations

This study was limited by the sample homogeneity. All parents were mothers, and a large majority was non-Hispanic and White. Further, most mothers were part of a two-parent household and referenced partner support as key to injury prevention. Our findings may differ from samples including fathers, as previous work suggests fathers play a unique role regarding supervision and injury prevention (Damashek & Kuhn, 2013). Additionally, autistic children may have a range of non-parent primary or secondary caregivers who possess their own unique perspectives on risk and injury prevention. Regarding differences in race and ethnicity, Hispanic and Black parents of autistic children report similar levels of stress compared to White parents, but they experience lower levels of parental burden as well as greater extended family support (Rivera-Figueroa et al., 2022). Moreover, when considering socioeconomic impact on ASD, families from lower SES backgrounds report less understanding of ASD and its related symptoms (Ferguson & Vigil, 2019). Together, these differences may impact reported parental concerns about child injury, injury prevention strategies, and the impact of these strategies on parent well-being. Future studies should consider additional caregiver perspectives, including more diverse sociodemographic backgrounds and families whose personal experiences may reflect differing concerns about injury prevention and supervision.

Also limiting was the fact that the autistic children of the study participants were predominantly male. Findings may not generalize to autistic female children, who often are diagnosed late or misdiagnosed (Loomes et al., 2017), perhaps due to growing evidence of a “female autism phenotype (FAP)”, or behavioral expression of autism that differs and is more common in females compared to males (Hull et al., 2020). Experiences and strategies reported among parents of female autistic children may broaden understanding of this challenge.

Additionally, most mothers in the sample reported their child experienced an unintentional injury severe enough to require a visit to a medical professional, a detail that may reflect increased interest to participate in the study and create sampling bias. It is unclear whether the concerns and level of supervision reported existed prior to or changed as a result of an injury. Among parents with typically developing children, perceived risk of injury increases after a medically attended injury (Ishikawa et al., 2018). Future studies should examine relations between previous injury history and changes in concern and levels of supervision among parents of autistic children.

Child diagnosis was provided through mother report and was not confirmed through medical record review. We also did not evaluate the role of symptom severity or consider dual diagnoses. For example, at least one child in the sample was diagnosed at age 7 years, which suggests a different symptom presentation and/or access to resources for diagnosis than those who were diagnosed at younger ages. Future research should consider including a control group and characterizing ASD symptoms and co-occurring symptoms and conditions that may be related to injury and prevention among the autism group. Finally, we included children from a broad age range (3–12 years), a decision that offered both strengths (e.g., ability to gain maternal perspectives of raising autistic children across a range of developmental stages) and limitations (e.g., inability to learn about challenges at particular stages).

Conclusions

By considering the lived experiences of mothers caring for autistic children through qualitative research, this study sought to identify concerns, responsibilities, and strategies parents experience related to child unintentional injury prevention. In semi-structured interviews, mothers described considerable effort to keep their children with autism safe from injury. They identified supervision as their primary safety strategy and experienced significant parenting stress related to the demands of the child injury prevention strategies they implemented. Our results can help guide the development of comprehensive child safety interventions by clinicians, interventionists, and researchers. Additional research is recommended to help clinicians guide parents of autistic children in ways to minimize caregiving effort and exhaustion related to child injury prevention.

Implications for Impact Statement.

This study highlights the unique challenges mothers of autistic children face in preventing unintentional injuries. These mothers reported heightened concerns about their children’s safety due to traits of autism, such as lack of danger awareness and poor spatial skills, which led mothers to rely heavily on supervision and environmental control and impacted their levels of stress and exhaustion. The findings underscore the need for pediatric psychologists and clinicians to develop tailored, multi-system strategies that support both child safety and the mental well-being of parents, reducing stress while promoting independence and safety skills in autistic children.

Data availability statement:

The data that support the findings of this study are available from the corresponding author upon reasonable request.