Al-Beltagi M, Saeed NK, Bediwy AS, Alhawamdeh R, Elbeltagi R. Management of critical care emergencies in children with autism spectrum disorder. World J Crit Care Med 2025; 14(2): 99975 [DOI: 10.5492/wjccm.v14.i2.99975]
Corresponding Author of This Article
Mohammed Al-Beltagi, MBChB, MD, PhD, Chairman, Full Professor, Research Scientist, Department of Pediatric, Faculty of Medicine, Tanta University, Al-Bahr Street, The Medical Complex, Tanta 31511, Alghrabia, Egypt. mbelrem@hotmail.com
Research Domain of This Article
Critical Care Medicine
Article-Type of This Article
Systematic Reviews
Open-Access Policy of This Article
This article is an open-access article which was selected by an in-house editor and fully peer-reviewed by external reviewers. It is distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/
Mohammed Al-Beltagi, Department of Pediatric, Faculty of Medicine, Tanta University, Tanta 31511, Alghrabia, Egypt
Mohammed Al-Beltagi, Department of Pediatric, University Medical Center, King Abdulla Medical City, Arabian Gulf University, Manama 26671, Manama, Bahrain
Nermin Kamal Saeed, Medical Microbiology Section, Department of Pathology, Salmaniya Medical Complex, Ministry of Health, Kingdom of Bahrain, Manama 26671, Manama, Bahrain
Nermin Kamal Saeed, Medical Microbiology Section, Department of Pathology, Irish Royal College of Surgeon, Bahrain, Busaiteen 15503, Muharraq, Bahrain
Adel Salah Bediwy, Department of Pulmonology, Faculty of Medicine, Tanta University, Tanta 31527, Alghrabia, Egypt
Adel Salah Bediwy, Department of Pulmonology, University Medical Center, King Abdulla Medical City, Arabian Gulf University, Manama 26671, Manama, Bahrain
Rawan Alhawamdeh, Department of Pediatrics Research and Development, Sensoryme Dwc-llc, Dubai 712495, Dubai, United Arab Emirates
Rawan Alhawamdeh, Department of Pediatrics Research and Development, Genomics Sensory Play and Creativity Center, Manama 22673, Manama, Bahrain
Reem Elbeltagi, Department of Medicine, The Royal College of Surgeons in Ireland-Bahrain, Busiateen 15503, Muharraq, Bahrain
Co-first authors: Mohammed Al-Beltagi and Nermin Kamal Saeed.
Author contributions: Al-Beltagi M was responsible for conceptualization, study design, drafting the manuscript, and critically revising it for important intellectual content; Saeed NK contributed to data analysis and interpretation, provided clinical expertise, and reviewed the manuscript for accuracy and clarity; Bediwy AS assisted with the literature review, data acquisition, and editing of the manuscript. Alhawamdeh R contributed to drafting specific sections, organizing references, and formatting tables and figures; Elbeltagi R reviewed the final manuscript for coherence and alignment, supported graphical content preparation, and provided administrative oversight. All authors reviewed and approved the final version of the manuscript, ensuring its integrity and quality.
Conflict-of-interest statement: The authors declare that they have no conflicts of interest to disclose regarding the publication of this manuscript. All authors have contributed to the work and have no financial, personal, or professional affiliations that could influence the content or interpretations presented in this study.
PRISMA 2009 Checklist statement: The authors have read the PRISMA 2009 Checklist, and the manuscript was prepared and revised according to the PRISMA 2009 Checklist.
Open Access: This article is an open-access article that was selected by an in-house editor and fully peer-reviewed by external reviewers. It is distributed in accordance with the Creative Commons Attribution NonCommercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: https://creativecommons.org/Licenses/by-nc/4.0/
Corresponding author: Mohammed Al-Beltagi, MBChB, MD, PhD, Chairman, Full Professor, Research Scientist, Department of Pediatric, Faculty of Medicine, Tanta University, Al-Bahr Street, The Medical Complex, Tanta 31511, Alghrabia, Egypt. mbelrem@hotmail.com
Received: August 4, 2024 Revised: December 13, 2024 Accepted: December 30, 2024 Published online: June 9, 2025 Processing time: 206 Days and 23.8 Hours
Abstract
BACKGROUND
Managing critical care emergencies in children with autism spectrum disorder (ASD) presents unique challenges due to their distinct sensory sensitivities, communication difficulties, and behavioral issues. Effective strategies and protocols are essential for optimal care in these high-stress situations.
AIM
To systematically evaluate and synthesize current evidence on best practices for managing critical care emergencies in children with ASD. The review focuses on key areas, including sensory-friendly environments, communication strategies, behavioral management, and the role of multidisciplinary approaches.
METHODS
A comprehensive search was conducted across major medical databases, including PubMed, Embase, and Cochrane Library, for studies published between 2000 and 2023. Studies were selected based on their relevance to critical care management in children with ASD, encompassing randomized controlled trials, observational studies, qualitative research, and case studies. Data were extracted and analyzed to identify common themes, successful strategies, and areas for improvement.
RESULTS
The review identified 50 studies that met the inclusion criteria. Findings highlighted the importance of creating sensory-friendly environments, utilizing effective communication strategies, and implementing individualized behavioral management plans. These findings, derived from a comprehensive review of current evidence, provide valuable insights into the best practices for managing critical care emergencies in children with ASD. Sensory modifications, such as reduced lighting and noise, visual aids, and augmentative and alternative communication tools, enhanced patient comfort and cooperation. The involvement of multidisciplinary teams was crucial in delivering holistic care. Case studies provided practical insights and underscored the need for continuous refinement of protocols.
CONCLUSION
The review emphasizes the need for a tailored approach to managing critical care emergencies for children with ASD. Sensory-friendly adjustments, effective communication, and behavioral strategies supported by a multidisciplinary team are integral to improving outcomes. Despite progress, ongoing refinement of care practices and protocols is necessary. This ongoing process addresses remaining challenges and engages healthcare professionals in continuous improvement of care for children with ASD in critical settings.
Core Tip: This comprehensive systematic review highlights the importance of tailored approaches in managing critical care emergencies in children with autism spectrum disorder (ASD). The study examines various case studies by examining the need for sensory-friendly environments, effective communication strategies, and multidisciplinary care. Key strategies include minimizing sensory overload, using visual aids, involving caregivers, and implementing structured routines. The findings underscore the significance of individualized care plans and the potential for improved outcomes through targeted interventions and training programs for healthcare providers. This review advocates for continuous refinement of protocols to better meet the unique needs of children with ASD in emergency settings.
Citation: Al-Beltagi M, Saeed NK, Bediwy AS, Alhawamdeh R, Elbeltagi R. Management of critical care emergencies in children with autism spectrum disorder. World J Crit Care Med 2025; 14(2): 99975
Autism spectrum disorder (ASD) is a complex neurodevelopmental condition characterized by persistent deficits in social communication and interaction, as well as restricted, repetitive patterns of behavior, interests, or activities. Symptoms of ASD typically emerge in early childhood and vary widely in severity, reflecting the spectrum nature of the disorder[1]. Recent estimates from the Centers for Disease Control and Prevention indicate that ASD affects approximately 1 in 54 children in the United States. The prevalence of ASD has increased over recent decades due to heightened awareness and refined diagnostic criteria[2]. The cause of ASD is multifactorial, involving both genetic and environmental components. Genetic predisposition is significant, with studies highlighting a higher concordance rate among monozygotic twins than dizygotic twins, though no single gene has been pinpointed as causative[3]. Additionally, environmental factors, such as advanced parental age, prenatal exposure to certain medications or infections, and birth complications, may also play a role[4].
Children with ASD face significant challenges in social communication. They often struggle to start and maintain conversations, understand social cues, and use gestures and facial expressions. They may prefer solitary activities and have difficulty forming and maintaining relationships[5]. Additionally, they exhibit restricted and repetitive behaviors, such as repetitive movements, strict adherence to routines, and intense interest in specific topics or objects. Sensory sensitivities are also common, with children showing hyper- or hypo-reactivity to sensory stimuli like sounds, lights, textures, or smells. This can lead to significant anxiety and behavioral issues[6].
Critical care emergencies are acute medical conditions immediately threatening a patient’s life, requiring rapid and intensive medical intervention. These include severe respiratory or cardiovascular events, neurological crises, major trauma, sepsis, anaphylaxis, metabolic disturbances, significant hemorrhage, and acute poisoning or overdose[7]. Managing these emergencies necessitates prompt assessment, stabilization, and treatment by a multidisciplinary team, often within an intensive care unit (ICU), to prevent deterioration and improve survival outcomes. Children with ASD have a high prevalence of medical comorbidities such as epilepsy, gastrointestinal issues, and sleep disorders that can lead to acute medical crises that require immediate and intensive care[8]. Addressing critical care emergencies in children with ASD is paramount due to their unique challenges, which include significant communication barriers, sensory sensitivities, and behavioral issues. These factors complicate the management of medical emergencies, necessitating specialized approaches[9]. This article aims to outline key considerations and strategies for managing critical care emergencies in children with ASD, ensuring their unique needs are met effectively. This includes addressing communication barriers, sensory sensitivities, behavioral challenges, medical considerations, and the importance of a multidisciplinary approach to provide compassionate and comprehensive care during emergencies.
MATERIALS AND METHODS
This comprehensive systematic review aimed to synthesize existing knowledge on managing critical care emergencies in children with ASD. The methodology adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines to ensure transparency and reproducibility. We conducted a structured search across multiple databases, including PubMed, Embase, Scopus, and the Cochrane Library, using a combination of relevant keywords and Medical Subject Headings terms. The search terms included “Autism Spectrum Disorder” “critical care” “emergency management” “ICU” “sensory sensitivities” “behavioral challenges” “communication strategies” and “multidisciplinary approach”. Filters were applied to include only English-language articles published between January 2000 and July 2024.
We included peer-reviewed articles that specifically addressed critical care management for pediatric patients with ASD, focusing on sensory sensitivities, communication strategies, behavioral management, and multidisciplinary approaches. Eligible studies encompassed randomized controlled trials, observational studies, systematic reviews, meta-analyses, case studies, and guidelines. Studies were excluded if they focused on non-ASD populations or adult patients, addressed non-emergency or outpatient care settings, lacked sufficient methodological quality or peer review, or were opinion pieces, editorials, or conference abstracts.
The study selection process involved two independent reviewers who screened titles and abstracts to identify potentially relevant studies. Then, full-text articles were reviewed for eligibility based on the inclusion and exclusion criteria. Discrepancies were resolved through discussion or consultation with a third reviewer. Two reviewers independently extracted data using a standardized data collection form. The data included study design, sample size, interventions, outcomes, and main findings.
The PRISMA flowchart (Figure 1) illustrates the study selection process. Of the 255 records initially identified, 123 articles were assessed for eligibility. Detailed reasons for exclusion included duplicate setting (n = 35), no full text available (n = 47), non-ASD population (n = 14), non-emergency or outpatient settings (n = 13), and insufficient methodological quality (n = 12). Ultimately, 50 studies were included in the final analysis. Synthesized findings from these articles were categorized into four key thematic areas: Sensory-friendly environments, communication strategies, behavioral management, and multidisciplinary approaches.
The quality of the included studies was evaluated using appropriate tools, including the Cochrane Risk of Bias Tool for randomized controlled trials, the Newcastle-Ottawa Scale for observational studies, and the Critical Appraisal Skills Program checklist for qualitative studies. Case studies were assessed for their clarity, relevance, and potential contributions to practical guidelines. Quantitative analyses were performed where possible, including pooled estimates and descriptive statistics to identify trends. Meta-analytic methods were applied to evaluate the efficacy of interventions across studies, focusing on key outcomes such as reducing sensory overload and improving patient cooperation. The review adhered to ethical guidelines, ensuring a transparent and reproducible process without the need for ethical approval.
RESULTS
Our comprehensive systematic review identified and analyzed 123 studies that met the inclusion criteria. These included 50 research studies, 53 review articles, 12 systematic reviews and meta-analyses, 3 case studies, 3 editorials, and 2 guidelines and policies on managing critical care emergencies in children with ASD (Figure 1). The findings were organized into key thematic areas: Sensory-friendly environments (12 articles), communication strategies (12 articles), behavioral management (13 articles), and the role of multidisciplinary approaches (13 articles).
Sensory-friendly environments
The review highlighted that creating a sensory-friendly environment in the critical care setting is crucial for managing children with ASD. Studies consistently reported that modifications such as dimming lights, reducing noise levels, and using noise-canceling headphones significantly decreased anxiety and distress in these children. Environmental adjustments, such as providing familiar comfort items and creating quiet, designated areas for retreat, were also effective in reducing sensory overload and improving patient comfort. Table 1 shows the studies on providing Sensory-Friendly Environments in the critical care setting.
Table 1 Selected studies on sensory-friendly environments.
Identified barriers to providing sensory-friendly environments
Communication strategies
Effective communication emerged as a critical factor in managing critical care for children with ASD. Simplified language, visual aids, and the use of augmentative and alternative communication (AAC) tools were frequently mentioned as essential for facilitating understanding and cooperation. The involvement of caregivers in the communication process was consistently emphasized, with studies showing that caregiver presence and input helped calm the child and provide valuable insights into their needs (Table 2).
Table 2 Selected studies on communication strategies.
Validated tools for pain assessment in non-verbal ASD children
Behavioral management
The review found that behavioral management strategies, including de-escalation techniques and structured routines, were pivotal in handling emergencies involving children with ASD. Techniques such as calm verbal interactions, providing clear explanations of procedures, and using visual schedules were reported to help manage behavioral outbursts and reduce stress. Multiple studies underscored the importance of individualized behavioral plans tailored to the child’s specific needs and preferences (Table 3).
Table 3 Selected studies on behavioral management.
The role of multidisciplinary teams in managing critical care for children with ASD was a recurring theme. The review found that collaboration among pediatricians, intensivists, nurses, behavioral therapists, occupational therapists (OTs), speech and language pathologists (SLPs), dietitians, and mental health professionals resulted in more effective and holistic care. Multidisciplinary approaches facilitated integrated care plans and ensured that all aspects of the child's needs were addressed comprehensively (Table 4).
Table 4 Selected studies on multidisciplinary approaches.
Advocated multidisciplinary management in ASD crises
We provided 5 case studies to provide practical insights into real-world applications of these strategies. They successfully managed sensory sensitivities, behavioral challenges, and communication barriers in critical care settings. However, case studies also revealed limitations and challenges, such as variability in the implementation of strategies and the need for further refinement of protocols. Overall, the review highlighted that while significant progress has been made in understanding and addressing the unique needs of children with ASD in critical care settings, there remains a need for ongoing refinement of practices and protocols. The evidence supports a holistic, individualized approach that incorporates sensory-friendly modifications, effective communication strategies, and the collaborative efforts of a multidisciplinary team to improve outcomes for children with ASD in critical care.
DISCUSSION
Communication strategies in critical care for children with autism
Effective communication is essential when managing critical care emergencies for children with ASD. Recognizing and addressing their unique needs through tailored communication strategies ensures their safety, comfort, and cooperation during medical interventions[10].
The importance of communication in emergencies
In critical care settings, effective communication directly influences the quality of care and outcomes for children with ASD. These children often face significant challenges with traditional communication methods, making it difficult to express their needs, pain, or discomfort[11]. A lack of effective communication can exacerbate anxiety, lead to non-compliance, and intensify the medical emergency. By adopting appropriate communication strategies, healthcare providers can alleviate the child's stress, improve cooperation, and ensure that critical information is accurately exchanged[12]. This enhances immediate care and helps build trust and a sense of security between the child, their caregivers, and the medical team.
Simplified language and visual aids
Children with ASD often respond well to simplified and straightforward language. Clear, concise instructions devoid of medical jargon help them understand what is happening and what is expected of them[13]. For example, instead of saying, "An intravenous line is necessary to administer fluids and medications" a more accessible approach would be, "We will place a small tube in your arm to help you feel better". Visual aids such as pictures, diagrams, and step-by-step visual schedules can complement verbal communication, making complex procedures easier to grasp. For instance, a picture sequence illustrating a blood draw can prepare the child for each step, reducing anxiety and making the process more manageable[14].
Involvement of caregivers
Caregivers play a vital role in supporting children with ASD during emergencies. Familiar with the child’s unique communication style, preferences, and potential triggers, caregivers can offer critical insights and assistance. Their involvement can help healthcare providers interpret the child’s nonverbal cues, understand specific needs, and provide emotional reassurance[15]. Moreover, having a trusted caregiver present during interventions significantly reduces the child’s anxiety and promotes cooperation. Encouraging caregivers to participate actively—by explaining procedures in a way the child understands, comforting them during interventions, or helping to calm distress—ensures consistency in support and enhances the child's overall experience in the high-stress environment of critical care[16].
Nonverbal cues and gestures
Nonverbal communication plays a key role in interacting with children with ASD, who often rely heavily on body language and facial expressions to express their needs and emotions. Healthcare providers should remain observant of the child’s nonverbal signals, such as body posture, facial expressions, or behavioral changes, to assess their level of comfort, pain, or anxiety[17]. For example, a child who cannot verbally articulate pain might exhibit signs such as grimacing, withdrawal, or unusual quietness. Recognizing and responding to these cues enables timely and appropriate care. Additionally, using simple gestures and demonstrations can enhance understanding. Pointing to a body part or mimicking an action provides a clear, visual representation of instructions, facilitating better communication and engagement[18].
Sensory sensitivities in children with autism in the critical care setting
Common sensory sensitivities in children with ASD: Children with ASD often exhibit heightened sensory sensitivities, which can significantly influence their ability to cope in a critical care setting. These sensitivities may involve exaggerated or diminished responses to sensory stimuli, including noise, light, touch, texture, taste, and smell. Common sensory sensitivities in children with ASD include auditory, visual, tactile, olfactory, gustatory, proprioceptive, and vestibular sensitivities[19].
Auditory sensitivities, such as a heightened response to loud or sudden noises from alarms, medical equipment, or the bustling hospital environment, can trigger anxiety, agitation, or meltdowns[20]. Bright or flickering lights and the visual clutter of a busy hospital room may contribute to sensory overload as children with ASD struggle to process visual input effectively[21]. Tactile sensitivities, such as discomfort with hospital gowns, IV lines, or certain medical instruments, may lead to distress or aversion to physical contact and medical procedures[22]. Similarly, strong smells from cleaning agents, medications, or food, as well as unusual tastes, can cause nausea or discomfort, affecting a child’s willingness to eat or participate in procedures[23]. Sensitivities to movement, such as being transferred on a stretcher or experiencing positional changes, can be unsettling, with children exhibiting either heightened or diminished awareness of body position and movement, impacting their comfort and response to care[24].
Strategies to minimize sensory overload: Minimizing sensory overload is essential for effectively managing critical care in children with ASD. Strategies include environmental adjustments, creating calm and quiet spaces, controlling sensory inputs, maintaining predictable routines, and utilizing sensory tools[25]. Environmental adjustments might involve reducing noise by turning off unnecessary alarms or using sound-dampening materials, as well as dimming or adjusting lights to create a softer visual atmosphere. Reducing visual clutter by organizing the room and minimizing distractions can also help[26].
Providing a quiet or dedicated retreat space where the child can decompress is another important strategy. This space should minimize sensory stimuli and offer a calm, safe environment to help the child regulate[27]. For auditory sensitivities, noise-canceling headphones or earplugs can be provided. Dimmable lamps or light filters may address visual sensitivities, while soft, familiar textures like blankets or stuffed animals can ease tactile discomfort. Establishing predictable routines and preparing the child for medical procedures through clear explanations can reduce stress and improve cooperation[28]. Gradual desensitization to medical equipment and procedures through short, non-invasive exposures can help the child acclimate to new sensory experiences. Sensory tools such as fidget toys, chewable items, or weighted blankets offer additional comfort and support self-regulation during medical interventions[29].
Role of familiar comfort items: Familiar comfort items, such as favorite toys, blankets, or other personal belongings, can play a significant role in reducing anxiety and providing reassurance for children with ASD in critical care settings[30]. These items help create a sense of security and stability in the unfamiliar hospital environment, allowing the child to feel connected to their home and routine[31]. Many comfort items also possess sensory qualities that can help regulate sensory input; for example, a soft blanket or stuffed animal may provide tactile comfort, mitigating sensitivity to other physical sensations.
In addition to offering emotional reassurance, familiar items can serve as a positive distraction during medical procedures, helping the child cope with stress and focus on something comforting and recognizable[32]. These items also reinforce a sense of routine and predictability, which is especially valuable for children with ASD. By implementing strategies to minimize sensory overload and incorporating familiar comfort items, healthcare providers can create a more supportive and accommodating environment. This approach not only reduces stress for the child but also enhances their ability to cope with medical interventions, contributing to better immediate experiences and long-term outcomes in critical care settings[33].
Behavioral challenges in children with autism in the critical care setting
Predictability and structure in emergency settings: Children with ASD often rely on predictability and structure to feel secure. However, emergency settings' chaotic and unpredictable nature can pose significant challenges for them. Behavioral difficulties such as anxiety, meltdowns, aggression, and self-injurious behaviors are often exacerbated by sudden changes, unfamiliar faces, and unexpected procedures commonly encountered in emergency care[34].
To mitigate these challenges, healthcare providers should implement strategies that introduce predictability and structure into the emergency care process whenever feasible. Establishing consistent steps for each procedure is a key approach. This includes explaining what will happen, identifying who will be involved, and providing an estimated timeline[35]. Visual schedules can further enhance predictability by outlining the steps of the emergency care process using pictures or diagrams, helping the child anticipate what will happen next and reducing their anxiety. Additionally, clear, simple, and concrete explanations of procedures are essential. Avoiding medical jargon and breaking information into manageable parts can facilitate understanding[36].
Whenever possible, assigning consistent staff members to work with the child can build familiarity and trust. The presence of familiar faces can alleviate stress and behavioral issues[9]. Minimizing unnecessary noise and activity is also crucial to creating a calm and quiet environment. Reducing sensory stimuli helps the child feel more secure and less overwhelmed, promoting a smoother emergency care experience[37].
De-escalation techniques: De-escalation techniques are vital for managing behavioral challenges in children with ASD during critical care emergencies. These approaches help calm the child, prevent distress from escalating, and ensure safety for both the child and the healthcare providers[38].
Effective communication is fundamental. Speaking calmly, softly, and neutrally, while avoiding raising one’s voice or showing frustration, is crucial since children with ASD are highly sensitive to emotional tones. Similarly, non-threatening body language, such as maintaining a relaxed posture and avoiding sudden movements, can help put the child at ease[39].
Distraction techniques can redirect the child’s focus away from distressing stimuli. Engaging the child with a favorite toy, activity, or discussing a preferred topic can provide relief and cooperation[40]. Offering simple choices, such as “Would you like to hold your teddy bear or look at the picture book while we do this?”, can give the child a sense of control and reduce anxiety. Positive reinforcement is another effective tool; praising and rewarding the child for staying calm or following instructions, even for small achievements, can encourage desired behaviors[41]. Finally, allowing time-outs or breaks in a quiet space when the child becomes overwhelmed provides an opportunity for them to regain control before proceeding with medical interventions[42].
Preparing children for procedures: Preparing children with ASD for medical procedures is essential to reducing anxiety, preventing behavioral outbursts, and ensuring cooperation[34]. Proper preparation benefits both the child and the healthcare team by facilitating smoother interactions. Social stories are an effective method for explaining procedures step-by-step. These short, personalized narratives describe what will happen, why it is necessary, and how the child can cope. Social stories can be presented in written, visual, or video formats[30]. Providing visual and verbal explanations of the procedure, such as using pictures, diagrams, or videos accompanied by simple, clear verbal descriptions, can further enhance understanding[43].
Role-playing or practice sessions with toy medical equipment can help familiarize the child with the procedure. Gradually introducing the child to the medical environment and equipment in a non-threatening manner before the actual procedure can also alleviate anxiety[9]. Involving caregivers in the preparation process is another critical strategy. Caregivers can explain procedures in a familiar and reassuring manner, provide comfort, and model calm behavior, thereby easing the child’s apprehension[44]. Providing clear instructions and setting expectations for behavior are equally important. Explaining what the child needs to do, how long the procedure will take, and what will happen afterward ensures the child is informed and less likely to feel overwhelmed[45]. By implementing these strategies, healthcare providers can create a supportive and effective environment, reducing stress and improving cooperation and outcomes for children with ASD in critical care settings.
Medical considerations for children with autism in the critical care setting
Pain assessment tools tailored for children with ASD: Assessing pain in children with ASD can be particularly challenging due to their unique communication difficulties and varying pain thresholds. Standard pain assessment tools may not always be effective, highlighting the need for tailored approaches to evaluate and manage pain accurately[46]. Tools such as the Non-Communicating Children’s Pain Checklist and the face, legs, activity, cry, consolability scale are valuable for assessing pain in non-verbal children or those with limited communication abilities. To identify pain, these tools rely on behavioral and physiological indicators, including facial expressions, body movements, and vocalizations[47].
When feasible, self-report tools adapted for children with ASD, such as simplified visual analog scales (VAS) or the Faces Pain Scale-Revised, can be effective. These tools should be explained using clear, concrete language supported by visual aids to enhance understanding[48]. Involving parents or caregivers in pain assessment is critical, as they can provide key insights into subtle behavioral changes that may indicate pain. Caregivers often have the best understanding of the child’s typical behavior and reactions to discomfort. Consistent use of the same pain assessment tools allows for tracking pain levels over time, aiding in identifying patterns and ensuring effective management[49].
Medication sensitivities and considerations: Children with ASD may exhibit unique responses to medications, including heightened sensitivity to certain drugs and atypical side effects. Safe and effective pharmacological management requires careful consideration and customization. Medication dosages should be tailored based on the child’s weight, age, and specific medical history. Variations in drug metabolism among children with ASD often necessitate adjustments to standard dosing regimens[50].
Monitoring for adverse effects is essential, as children with ASD may be unable to articulate discomfort or side effects. Behavioral changes, alterations in appetite or sleep patterns, and physical symptoms should be closely observed to detect potential medication-related issues[51]. Efforts should be made to minimize polypharmacy by limiting the use of multiple medications simultaneously, thereby reducing the risk of drug interactions and side effects. When polypharmacy is unavoidable, potential interactions must be carefully considered, with close monitoring for any adverse outcomes[52].
Medication guides and visual aids can improve understanding of the purpose and administration of medications for both the child and their caregivers. Clear explanations help alleviate anxiety and enhance adherence to medication regimens[53]. For children with ASD who may have atypical reactions to sedatives and anesthetics, pre-procedural planning should involve consultation with pediatric anesthesia specialists to ensure safe and effective sedation.
Special dietary needs: Children with ASD often have specific dietary preferences and restrictions, which can influence their nutritional status and overall health. Addressing these needs in the critical care setting is crucial for providing optimal care[54]. Thorough assessment of the child’s dietary preferences, aversions, and existing dietary restrictions—including food allergies, intolerances, or specific diets such as gluten-free or casein-free—is essential[55]. Collaboration with dietitians is necessary to develop individualized nutritional plans that cater to the child’s needs. This may involve modifying hospital meals, providing specialized dietary supplements, or implementing enteral feeding methods when required[56].
Sensory sensitivities related to food, such as texture, taste, and smell, should be considered to ensure the child’s comfort. Providing familiar and preferred foods whenever possible can help maintain nutritional intake and reduce stress[57]. Adequate hydration should be prioritized, especially if the child has aversions to drinking water or other liquids. Offering preferred beverages and closely monitoring fluid intake are key strategies to prevent dehydration[58]. When feasible, it is beneficial to involve parents or caregivers in meal planning and preparation. Caregivers can provide invaluable insights into the child’s dietary habits and preferences, ensuring the child receives appropriate and acceptable nutrition during their critical care stay[59].
Multidisciplinary approach for children with autism in the critical care setting
Importance of a multidisciplinary team: A multidisciplinary team approach is essential for addressing the complex needs of children with ASD in critical care settings. Integrating expertise from various healthcare professionals ensures a holistic approach to care, addressing medical, behavioral, sensory, and communication challenges[59]. Collaborative efforts among team members improve the quality of care and the child’s overall experience in critical care environments[60].
This approach prioritizes the physical, emotional, and psychological well-being of children with ASD. By addressing these diverse aspects, the multidisciplinary team minimizes fragmented care, reduces stress for the child and family, and fosters seamless communication and coordination among specialists[61]. Such coordinated care avoids redundancies and potential misunderstandings while aligning interventions to provide consistent and effective treatment[62].
Leveraging the diverse expertise of team members allows for creating individualized treatment plans that consider each child’s unique needs and preferences. Regular and open communication within the team facilitates informed decision-making, ensuring that care is both cohesive and responsive to the child’s evolving needs[62,63].
Staff training in ASD-specific strategies: To optimize outcomes for children with ASD, all staff members involved in their care must receive training in ASD-specific strategies. This training equips healthcare providers with the knowledge and tools required to manage the unique challenges associated with ASD, thereby enhancing the quality of care and improving the child’s experience[64].
Training should provide an overview of ASD’s core characteristics, including common comorbidities and the variability of symptoms across individuals. Emphasis should be placed on effective communication techniques, such as using simplified language, incorporating visual aids, and interpreting non-verbal cues. Strategies for managing behavioral challenges, such as de-escalation techniques and maintaining predictability and structure, are also critical[65,66].
Additionally, staff should be trained to recognize and accommodate sensory sensitivities, minimizing sensory overload through adjustments in the critical care environment. Compassionate and empathetic care must remain central, with staff gaining insight into the perspectives of children with ASD and their families to foster trust and cooperation[21].
Roles of different team members: A multidisciplinary team for managing critical care emergencies in children with ASD typically includes various healthcare professionals, each playing a vital role in providing comprehensive care[67]. Key team members and their roles include pediatricians and intensivists, nurses, behavioral therapists, OT, SLP, dietitians, psychologists and psychiatrists, care coordinators, and family members and caregivers[68]. Pediatricians and Intensivists: Oversee the child's medical management, coordinating care plans, and making critical treatment decisions. They ensure that the medical interventions are tailored to the child’s specific needs and consider any ASD-related factors[69]. Nurses provide direct care and are often the primary point of contact for the child and family. They implement care plans, monitor the child’s condition, administer medications, and provide support during medical procedures. Nurses play a critical role in observing and responding to the child’s needs, including recognizing signs of pain or distress[70].
Behavioral therapists, including Applied Behavior Analysis (ABA) therapists, are critical in managing and modifying challenging behaviors. They develop and implement individualized behavior management plans and provide support during interventions to reduce stress and anxiety for the child[71]. OT focus on addressing the sensory and functional needs of children with ASD. They evaluate sensory sensitivities and devise strategies to mitigate sensory overload. This may include recommending sensory tools or implementing environmental modifications to create a more supportive critical care environment[72].
SLPs address the unique communication needs of children with ASD by creating and implementing tailored communication strategies. They may introduce AAC methods to facilitate understanding and expression, ensuring the child can effectively communicate with caregivers and medical staff[73]. Dietitians ensure that the child’s nutritional needs are met by considering special dietary preferences, restrictions, and sensory sensitivities. They collaborate with the multidisciplinary team to create individualized nutrition plans and provide guidance on feeding strategies to accommodate the child's specific needs[74].
Mental health professionals, including psychologists and psychiatrists, focus on supporting the emotional and psychological well-being of the child. They assess and manage co-occurring mental health conditions, such as anxiety or depression, and provide counseling and behavioral interventions to help the child cope with the critical care environment[75]. Care coordinators or case managers play a pivotal role in ensuring seamless communication among team members. They organize care plans and address all aspects of the child's needs. By acting as liaisons between the family and the healthcare team, they help families navigate the complexities of the healthcare system and ensure coordinated care[76].
Family members and caregivers are vital members of the care team. Their intimate understanding of the child’s preferences, behaviors, and calming strategies provides invaluable insights for personalized care. Their involvement also ensures continuity of care and offers essential emotional support to the child during their critical care journey. The collaboration of these diverse specialists, each contributing their expertise, enables the development of personalized treatment plans that enhance outcomes for children with ASD in critical care settings[77].
Protocols for children with autism in the critical care setting
Developing specific protocols for the emergency care of children with ASD is critical to addressing their unique needs effectively. These protocols establish standardized guidelines, enabling healthcare providers to deliver consistent and efficient care, thereby reducing variability in practice and improving patient outcomes[78]. Protocols should include clear guidelines for the initial assessment of children with ASD in emergency settings (Table 5)[79]. This includes identifying ASD-specific signs and symptoms, understanding the child's baseline behaviors, and gathering input from caregivers regarding effective communication and calming strategies. Effective communication is a cornerstone of care for children with ASD. Protocols should provide detailed guidance on communication techniques (Table 6)[80]. These may involve using simplified language, visual aids, and non-verbal cues to enhance understanding. Additionally, caregiver involvement in communication should be emphasized to foster cooperation and comfort for the child.
Table 5 Protocol that includes guidelines for the initial assessment of children with autism spectrum disorder in the emergency setting1.
Protocol component
Guidelines
Recognizing ASD
Identify children with a known diagnosis of ASD from medical records or caregiver reports
Observe for signs of ASD if no diagnosis is provided (e.g., communication difficulties, repetitive behaviors)
Baseline behaviors
Gather caregiver information about the child’s baseline behaviors and typical responses
Note any deviations from the child’s usual behavior that may indicate distress or pain
Communication preferences
Determine the child’s preferred method of communication (e.g., verbal, visual aids, sign language)
Use simplified language, clear and concise instructions, and visual aids to enhance understanding
Involving caregivers
Involve caregivers in the assessment process to provide comfort and familiar support
Ask caregivers to interpret the child’s behaviors and preferences
Sensory sensitivities
Assess for sensory sensitivities (e.g., to noise, lights, touch) based on caregiver input and observation
Minimize sensory overload by reducing noise, dimming lights, and avoiding unnecessary physical contact
Behavioral triggers
Identify potential triggers for behavioral challenges from caregivers (e.g., certain noises, activities)
Avoid known triggers and implement strategies to maintain a calm environment
Pain assessment
Use tailored pain assessment tools suitable for children with ASD, such as the Non-Communicating Children’s Pain Checklist or the face, legs, activity, cry, consolability scale
Observe for non-verbal indicators of pain (e.g., changes in facial expression, body movements)
Medical history
Obtain a detailed medical history, including any comorbid conditions, medications, and allergies
Consider the child’s history of reactions to medications and previous medical procedures
Individualized care plan
Develop an individualized care plan based on the initial assessment findings and caregiver input
Ensure the care plan addresses communication needs, sensory sensitivities, and behavioral management
Documentation
Document all findings from the initial assessment, including baseline behaviors, communication preferences, and any identified triggers
Update the care plan and share relevant information with all team members involved in the child’s care
Table 6 An example of communication protocol for children with autism spectrum disorder in the critical care and emergency setting1.
Protocol component
Guidelines
Simplified language
Use clear, concise, and simple language to explain instructions
Avoid medical jargon and complex phrases
Visual aids
Utilize visual aids, such as pictures, symbols, and written instructions, to support communication
Prepare visual schedules to outline steps of procedures or routines
Non-verbal cues
Pay attention to non-verbal cues from the child, such as body language, facial expressions, and gestures
Respond to these cues with appropriate actions or adjustments to care
Caregiver involvement
Involve caregivers in the communication process as they understand the child’s needs and preferences best
Allow caregivers to interpret and explain the child’s behavior and needs
Repetition and patience
Repeat instructions and information as necessary to ensure understanding
Be patient and give the child extra time to process information and respond
Clear instructions
Give step-by-step instructions for procedures, breaking down tasks into smaller, manageable parts
Use positive language to explain what will happen, avoiding negative or fear-inducing terms
Calm and soothing tone
Maintain a calm, soothing, and reassuring tone of voice
Avoid sudden changes in tone or volume that might startle the child
Consistency
Ensure consistency in communication methods among all staff members interacting with the child
Use the same phrases and visual aids to prevent confusion and build trust
Personal space
Respect the child’s personal space and avoid unnecessary physical contact
Approach the child slowly and from the front, avoiding sudden movements
Preparation and explanation
Prepare the child for procedures by explaining what will happen in advance
Use visual aids and simple language to describe each step of the process
Feedback and reassurance
Provide positive feedback and reassurance throughout interactions to build confidence and cooperation
Acknowledge the child’s efforts and successes in following instructions or coping with procedures
Crisis communication
Develop and follow specific communication strategies for managing behavioral crises or meltdowns
Use calming techniques and de-escalation strategies as needed
Behavioral challenges can be particularly complex in critical care settings. Protocols should offer strategies for managing these challenges, including de-escalation techniques and approaches to prevent sensory overload (Table 7)[81]. Step-by-step instructions for addressing meltdowns and maintaining a calm, predictable environment are vital to these guidelines. Tailored pain assessment tools for children with ASD are essential for proper management. Protocols should detail methods for interpreting behavioral and physiological indicators of pain and outline strategies for safe and effective pain management, with attention to potential medication sensitivities (Table 8)[82].
Table 7 Behavioral management protocols for children with autism spectrum disorder in the emergency setting1.
Protocol component
Guidelines
Predictability and structure
Maintain a predictable routine to help reduce anxiety
Use visual schedules to outline the sequence of events and procedures
Calm environment
Create a calm, quiet, and low-stimulation environment to minimize stress
Reduce noise, dim lights, and limit the number of people in the room
De-escalation techniques
Use calm, soothing tones and slow, deliberate movements to help de-escalate heightened behaviors
Avoid confrontation and allow the child space and time to calm down
Preparing children for procedures
Explain procedures in advance using simple language and visual aids
Allow the child to ask questions and express concerns, providing clear and reassuring responses
Positive reinforcement
Use positive reinforcement to encourage desired behaviors
Offer praise, rewards, or preferred activities for cooperation and calm behavior
Behavioral triggers
Identify and avoid known triggers for challenging behaviors, as informed by caregivers
Develop individualized plans to prevent and manage potential triggers
Sensory breaks
Provide opportunities for sensory breaks and quiet time as needed
Use sensory tools (e.g., noise-canceling headphones, weighted blankets) to help the child self-regulate
Comfort items
Allow the use of familiar comfort items (e.g., toys, blankets) to provide reassurance and reduce anxiety
Visual supports
Utilize visual supports, such as social stories and visual cues, to explain expectations and procedures
Use visual timers to help the child understand the duration of activities or waiting periods
Crisis intervention
Develop and follow specific crisis intervention plans for managing severe behavioral crises
Ensure all staff are trained in safe and effective crisis intervention techniques
Caregiver involvement
Involve caregivers in behavioral management strategies, as they know the child’s preferences and effective calming techniques
Collaborate with caregivers to develop and implement individualized behavior plans
Documentation
Document all behavioral incidents, triggers, and successful interventions
Use this information to adjust care plans and improve future management strategies
Table 8 Pain assessment tools, guidelines for interpreting behavioral and physiological indicators of pain, and safe and effective pain management strategies for children with autism spectrum disorder1.
Protocol component
Guidelines
Pain assessment tools
Non-communicating children's pain checklist
Use to assess pain in non-verbal children. Includes categories like vocal expressions, social behavior, and body/limb movements
Face, legs, activity, cry, consolability scale
Use for children who can’t communicate their pain. Scores behaviors in five categories to determine pain level
Faces pain scale-revised
Use for children who can understand and point to facial expressions that correspond to their pain level
Visual analog scale
Use for children capable of understanding and marking a point on a line that represents their pain intensity
Behavioral indicators of pain
Vocalizations
Moaning, crying, or screaming
Facial expressions
Grimacing, frowning, or tightly closed eyes
Body movements
Restlessness, rigidity, flinching, or guarding specific areas
Changes in social behavior
Withdrawal, irritability, or aggression
Changes in routine activities
Refusal to eat, sleep disturbances, or reluctance to move
Use for mild to moderate pain and inflammation, monitoring for potential gastrointestinal or renal side effects
Opioids
Use for severe pain, with careful monitoring for side effects and potential for dependence
Local anesthetics
Use topical or local anesthetics for procedural pain management
Alternative therapies
Consider options such as physical therapy, occupational therapy, or acupuncture as adjuncts to pain management
Medication sensitivities
Allergies
Verify and document any known medication allergies or adverse reactions
Comorbid conditions
Consider the impact of comorbid conditions on medication choice and dosing
Drug interactions
Review all current medications to avoid potential drug interactions
Monitoring and reassessment
Regular monitoring
Regularly reassess pain levels using appropriate tools, and adjust management strategies as needed
Documentation
Document pain assessments, interventions, and outcomes in the child’s medical record
Family and caregiver input
Involve caregivers in the pain assessment and management process to provide additional insights and support
Developing comprehensive guidelines for the safe use of sedation and anesthesia in children with ASD is crucial. These guidelines should emphasize the importance of consulting with pediatric anesthesiologists, tailoring dosages to individual needs, and closely monitoring for atypical or adverse reactions (Table 9)[83]. Addressing the dietary needs of children with ASD requires specific protocols to manage feeding challenges and ensure nutritional adequacy (Table 10). These protocols should include assessing dietary preferences and restrictions, providing appropriate nutritional support, and involving dietitians as integral members of the care team[84].
Table 9 Sedation and anesthesia protocols for children with autism spectrum disorder in the emergency setting1.
Protocol component
Guidelines
Pre-procedure assessment
Medical history
Obtain a detailed medical history, including any previous reactions to sedation or anesthesia
Review comorbid conditions, current medications, and allergies
Behavioral assessment
Assess baseline behaviors and any known triggers for anxiety or behavioral issues
Consult with caregivers for effective calming strategies and past experiences with sedation
Preparation for sedation/anesthesia
Communication
Explain the procedure to the child using simple language and visual aids
Involve caregivers to help explain and reassure the child
Familiar items
Allow the child to have familiar comfort items during the preparation phase
Pre-medication
Consider using anxiolytics or mild sedatives as premedication to reduce anxiety and agitation
Sedation/anesthesia plan
Tailored dosage
Adjust dosages based on the child’s weight, age, and medical history
Use the lowest effective dose to achieve the desired level of sedation or anesthesia
Medication choice
Select sedatives and anesthetics with a favorable safety profile and minimal side effects
Avoid medications known to exacerbate behavioral issues or cause adverse reactions in children with ASD
Multidisciplinary Consultation
Involve a pediatric anesthesiologist and other specialists as needed to develop a comprehensive plan
During sedation/anesthesia
Monitoring
Continuously monitor vital signs, including heart rate, respiratory rate, blood pressure, and oxygen saturation
Observe for any signs of distress, adverse reactions, or changes in behavior
Behavioral observation
Monitor behavioral responses to sedation, noting any unusual or unexpected reactions
Post-procedure care
Recovery monitoring
Monitor the child closely during the recovery phase for any delayed reactions or complications
Ensure a calm and quiet environment to facilitate smooth recovery
Pain management
Provide appropriate pain relief post-procedure, considering the child’s pain threshold and sensitivities
Use non-pharmacological methods in conjunction with medication for effective pain management
Caregiver involvement
Allow caregivers to be present during recovery to provide comfort and reassurance
Educate caregivers on what to expect during the recovery period and signs of potential complications
Documentation and follow-up
Detailed documentation
Document all sedation/anesthesia process aspects, including medications used, dosages, and responses
Record any adverse reactions or complications and the interventions used to address them
Follow-up care
Schedule follow-up appointments to monitor the child’s recovery and address any ongoing concerns
Provide caregivers with contact information for post-procedure questions or emergencies
Table 10 Nutritional and dietary protocols for children with autism spectrum disorder in the emergency setting1.
Protocol component
Guidelines
Initial assessment
Medical and dietary history
Obtain a detailed medical history, including any comorbid conditions and current medications
Review the child’s dietary intake, food preferences, and known allergies or intolerances
Caregiver input
Consult with caregivers to understand the child’s typical eating habits, favorite foods, and any aversions
Anthropometric measurements
Measure and document the child’s weight, height, and BMI to assess nutritional status
Nutritional needs
Caloric requirements
Calculate the child’s caloric needs based on age, weight, and clinical condition
Macronutrient distribution
Ensure a balanced intake of carbohydrates, proteins, and fats according to the child’s needs and preferences
Micronutrient needs
Monitor for any signs of micronutrient deficiencies and address them through diet or supplementation
Special dietary considerations
Food sensitivities and allergies
Avoid known allergens and foods that the child is sensitive to, as reported by caregivers
Texture and consistency
Consider the child’s food texture and consistency preferences, providing options that are easier to consume
Gastrointestinal issues
Address any gastrointestinal issues (e.g., constipation, diarrhea) with appropriate dietary modifications
Meal planning and provision
Regular mealtimes
Maintain regular meal and snack times to provide structure and predictability for the child
Familiar foods
Offer familiar and preferred foods to encourage intake and reduce stress
Nutrient-dense foods
Prioritize nutrient-dense foods to ensure adequate nutrition even with limited intake
Feeding strategies
Positive reinforcement
Use positive reinforcement to encourage the child to try new foods or maintain healthy eating habits
Minimal distractions
Create a calm and distraction-free environment during meals to help the child focus on eating
Adaptive utensils
Provide adaptive utensils and cups if needed to facilitate independent eating
Nutritional monitoring
Regular monitoring
Monitor the child’s nutritional intake, weight, and overall health status regularly
Adjustments as needed
Adjust the dietary plan based on the child’s evolving needs and any changes in their medical condition
Supplementation
Vitamin and mineral supplements
Provide vitamin and mineral supplements to address deficiencies or support overall health
Special formulas
Consider using specialized nutritional formulas if the child has significant dietary restrictions or needs
Caregiver education and support
Dietary guidance
Educate caregivers on the importance of balanced nutrition and how to meet their child’s dietary needs.
Meal preparation
Provide tips and resources for preparing nutritious meals that align with the child’s preferences and needs
Emergency planning
Develop an emergency plan for situations where usual foods are unavailable, including suitable alternatives
Documentation
Detailed records
Document all aspects of the child’s nutritional and dietary assessment, interventions, and outcomes
Care plan updates
Regularly update the child’s care plan to reflect any dietary needs or preferences changes
Ensuring thorough post-emergency care is vital to the child's recovery. Follow-up protocols should be established to monitor recovery, address any ongoing medical or behavioral concerns, and support caregivers throughout the process (Table 11)[85]. Training healthcare providers in ASD-specific strategies is a foundational component of effective care. Protocols for regular staff training sessions should be implemented to ensure that all team members are equipped with the necessary knowledge and skills to care for children with ASD effectively (Figure 2, Table 12)[86].
Figure 2 A flowchart illustrating the step-by-step process for managing emergencies in children with autism spectrum disorder.
It includes initial assessment, communication strategies, sensory modifications, behavioral management, and follow-up care.
Table 11 Post-emergency follow-up protocols for children with autism spectrum disorder in the emergency setting1.
Protocol component
Guidelines
Immediate post-emergency care
Observation and monitoring
Monitor vital signs, pain levels, and overall condition immediately after the emergency event
Ensure a calm and supportive environment to aid recovery
Reassurance and comfort
Provide reassurance to the child using simple language and visual aids
Allow the child to have familiar comfort items
Caregiver presence
Encourage the presence of caregivers to provide emotional support and continuity of care
Discharge planning
Clear instructions
Provide clear and simple discharge instructions to caregivers, both verbally and in written form
Medication management
Explain any medications prescribed, including dosages, administration times, and potential side effects
Follow-up appointments
Schedule follow-up appointments with relevant healthcare providers, such as primary care physicians or specialists
Emergency plan
Develop an emergency plan for future incidents, including contact information and steps to take
Ongoing monitoring and support
Regular check-ins
Conduct regular follow-up calls or visits to monitor the child’s progress and address any concerns
Behavioral and emotional support
Provide behavioral and emotional support resources, including referrals to therapists or counselors
Nutritional support
Ensure the child’s nutritional needs are being met post-emergency, including any dietary restrictions or preferences
Caregiver education and resources
Education on ASD-specific needs
Educate caregivers on the unique needs of children with ASD, particularly in relation to post-emergency care
Resource provision
Provide information on support groups, community resources, and educational materials related to ASD
Multidisciplinary follow-up
Team coordination
Ensure coordination among all healthcare team members, including pediatricians, specialists, and therapists
Communication
Maintain open lines of communication among healthcare providers to share updates and coordinate care plans
Documentation
Detailed records
Document all aspects of the post-emergency follow-up, including observations, caregiver interactions, and interventions
Care plan updates
Regularly update the child’s care plan to reflect progress, changes in condition, and any new recommendations
Feedback and continuous improvement
Caregiver feedback
Solicit feedback from caregivers on the effectiveness of the care and follow-up provided
Quality improvement
Use feedback and outcomes data to continuously improve emergency care and follow-up protocols for children with ASD
Table 12 Training and education protocols for managing children with autism spectrum disorder in the emergency setting1.
Protocol component
Guidelines
Initial training for staff
ASD awareness Training
Provide comprehensive training on understanding ASD, including common characteristics and behaviors
Sensory sensitivities
Educate staff on sensory sensitivities commonly experienced by children with ASD and strategies to minimize sensory overload
Behavioral management
Train staff in recognizing and managing behavioral challenges, including de-escalation techniques and positive reinforcement
Communication strategies
Teach effective communication methods tailored for children with ASD, such as using simplified language, visual aids, and non-verbal cues
Medical considerations
Educate staff on specific medical considerations, including pain assessment tools, medication sensitivities, and special dietary needs
Ongoing education and refreshers
Regular refresher courses
Schedule periodic refresher courses to keep staff updated on best practices and new research related to ASD care
Case studies and simulations
Use case studies and simulation exercises to reinforce learning and improve the practical application of protocols
Specialized training for key roles
Emergency department staff
Provide focused training for emergency department personnel on handling acute emergencies involving children with ASD
Nurses and paramedics
Ensure nurses and paramedics receive additional training on immediate care and transport of children with ASD
Anesthesiologists and surgeons
Offer specialized training on sedation, anesthesia protocols, and surgical considerations for children with ASD
Family and caregiver involvement
Collaborative training sessions
Involve caregivers in training sessions to share insights and effective strategies for managing their child’s needs
Educational materials
Provide caregivers with educational materials on emergency protocols and how to support their child during emergencies
Evaluation and feedback
Competency assessments
Conduct regular competency assessments to ensure staff are proficient in applying the training protocols
Feedback mechanisms
Implement mechanisms for staff to provide feedback on the training program and suggest areas for improvement
Documentation and certification
Training records
Maintain detailed records of all training sessions attended by staff, including dates and content covered
Certification programs
Develop certification programs to recognize staff who have completed advanced training in ASD emergency care
Continuous improvement
Review of best practices
Regularly review and update training materials to incorporate the latest research and best practices in ASD care
Interdisciplinary collaboration
Foster interdisciplinary collaboration to enhance the training program and ensure comprehensive care for children with ASD
Resource provision
Access to resources
Provide staff with easy access to resources such as guidelines, visual aids, and toolkits specific to ASD care
Support networks
Establish support networks within the institution for staff to share experiences and strategies related to ASD care
Follow-up care for children with autism in the critical care setting
Post-emergency care for children with ASD is pivotal in ensuring a smooth transition from acute care to recovery, minimizing the risk of future emergencies. After stabilization, continuous monitoring of vital signs and pain levels is necessary, with particular attention to behavioral and physiological indicators of distress[87]. Creating a calm and supportive environment, with dimmed lights, reduced noise, and familiar comfort items, helps reduce anxiety and fosters a sense of safety. Clear and simple communication should be used, employing visual aids and social stories to explain past events and outline the next steps[88]. Caregivers are essential in providing comfort and stability, emphasizing their involvement throughout the recovery process.
Utilizing ASD-specific pain assessment tools is critical to determine pain levels and guide appropriate management accurately. Medication plans should account for any sensitivities or adverse reactions previously experienced[11]. Upon discharge, caregivers should receive detailed, easy-to-understand instructions, including guidance on medication administration, follow-up care schedules, and early signs of potential complications. Developing a tailored emergency plan for caregivers is vital, outlining key contacts and step-by-step actions for managing future crises[90].
Supporting caregivers is a cornerstone of effective follow-up care. Offering training in ASD-specific emergency management, including recognizing early signs of distress and handling sensory sensitivities, equips caregivers with essential skills[91]. Providing resources on effective communication, behavioral management, and educational strategies fosters their ability to support the child. Emotional support through counseling services and peer support groups should be readily available to caregivers, acknowledging the psychological demands they face[92]. Encouraging caregivers to prioritize their well-being and access respite care when needed can help sustain their ability to provide quality care. Additionally, practical assistance in navigating healthcare systems, managing follow-up appointments, accessing therapies, and handling insurance or financial concerns is essential. Information about community resources, including special education services, therapy programs, and financial aid options, should also be readily accessible[93].
Long-term management involves a multidisciplinary approach to ensure holistic and continuous care. Regular follow-up appointments with pediatricians, specialists, and therapists should address the child’s health, development, and any residual issues stemming from the emergency[69]. Evidence-based behavioral therapies, such as ABA, should be integrated into the child’s care plan. These therapies can be complemented by individualized education plans and early intervention services to address developmental needs[94].
A collaborative multidisciplinary team—including pediatricians, neurologists, psychologists, OT, speech therapists, and social workers—should coordinate care, ensuring effective communication among members[95]. Medications should be reviewed periodically to optimize the management of comorbidities, ensuring a favorable balance between benefits and potential side effects[96]. A personalized emergency plan should be developed and regularly updated, with all caregivers, educators, and family members trained to implement it effectively[97]. Enhancing the child’s quality of life is a fundamental aspect of long-term care. Efforts should promote participation in social, recreational, and educational activities, address barriers to inclusion, and foster opportunities for meaningful engagement[98].
By implementing these comprehensive follow-up care strategies, providing robust caregiver support, and prioritizing long-term management, healthcare providers can significantly improve outcomes for children with ASD who experience critical care emergencies. This compassionate, multidisciplinary approach ensures that the unique needs of these children are met with expertise, empathy, and continuity.
Criteria for an ideal ICU caring for children with ASD
Designing an ideal ICU for children with ASD requires a comprehensive approach to address their distinct sensory, communication, and behavioral needs[99]. The primary objectives are to minimize sensory overload, enhance communication, ensure safety and comfort, and foster family involvement. The ICU environment should be sensory-friendly. Soft, dimmable lighting can reduce the discomfort caused by bright lights, which may overwhelm children with ASD[8]. Natural light should be incorporated wherever possible, with windows equipped with blinds or shades to allow caregivers to control light intensity. Soundproofing measures, such as noise-reducing materials and quiet alarms, should be implemented to minimize auditory stimuli from medical equipment, alarms, and conversations[100]. Communication systems should also be designed to operate quietly.
Maintaining a comfortable temperature is crucial, so adjustable temperature controls should be readily available. Walls should be painted in calming hues, such as soft blues, greens, or neutrals, to promote relaxation and avoid overstimulation[101]. Bright or highly contrasting colors should be avoided. Additionally, designated areas should be established within the ICU where children can retreat if they become overwhelmed[102]. These spaces should include sensory-friendly items such as weighted blankets, soft seating, and calming tools to provide a sense of comfort.
Private rooms or areas specifically designated for children with ASD are essential to minimize the stress and sensory overload caused by the busy ICU environment[103]. These rooms should be spacious enough to accommodate caregivers and allow for personalization. Including familiar items from home, such as toys, blankets, or family photos, can help create a comforting and secure atmosphere[28]. By incorporating these elements, an ICU can better address the unique needs of children with ASD, promoting their well-being and enabling more effective care during critical health episodes.
Effective communication is vital in caring for children with ASD in the ICU. Communication boards and visual aids should be readily available in each room, incorporating pictures, symbols, and words to enhance understanding[104]. Technology such as tablets equipped with communication apps and tools should be integrated to facilitate effective communication for non-verbal children or those with limited verbal abilities. Additionally, information boards displaying daily schedules and upcoming procedures visually can help children anticipate and understand their environment[105]. The ICU environment should prioritize minimizing the need for physical restraints. This can be achieved by using non-invasive monitoring techniques and providing comfortable, safe furniture[106]. Equally important is creating a secure environment to prevent children from wandering while maintaining easy access for caregivers and staff. Sensory-friendly comfort items, such as weighted blankets, fidget toys, and noise-canceling headphones, should be readily available to enhance the comfort and sense of security for children with ASD[107].
Caregivers play a crucial role in the child's care, and their presence should be accommodated within the ICU. Rooms should include dedicated space for caregivers, such as a fold-out bed or comfortable recliner. In addition, family areas within the ICU should be established, providing spaces for caregivers to rest, eat, and take breaks while staying close to their children[108]. Family support services, such as counseling rooms and meeting areas for family conferences, should also be included to ensure comprehensive emotional and practical support[109].
Therapeutic activities form a key component of holistic care for children with ASD. The ICU should have spaces equipped for occupational therapy, physical therapy, and speech therapy, along with sensory-friendly tools and equipment to aid in these interventions[110]. Medical equipment should be designed or modified to reduce noise and visual stimulation. This includes using quiet infusion pumps and monitors with dimmable displays. Dedicated areas for crisis intervention should be available within the ICU. These spaces should be equipped with sensory-friendly calming tools and staffed by trained personnel[111]. Clear and accessible emergency plans tailored to the needs of children with ASD should be present in each room, incorporating visual guides to enhance understanding during emergencies.
Staff training and education on ASD-specific care strategies are essential for effective care. The ICU should include dedicated spaces equipped with resources for ongoing learning and staff development[112]. Interdisciplinary team collaboration is also critical; spaces designed for team meetings and communication can facilitate seamless coordination of care[113]. By incorporating these thoughtful design elements, the ICU can provide a supportive, sensory-friendly environment tailored to the unique needs of children with ASD. This approach ensures that care is delivered compassionately, effectively, and holistically, improving outcomes and experiences for children and their families (Figure 3, Table 9 and Table 13).
Figure 3 An artificial intelligence-generated sensory-friendly intensive care unit room design for children with autism spectrum disorder.
To minimize sensory overload, the room includes soundproof doors, dimmable lighting, and noise-canceling equipment. The room features a comfortable, adjustable bed and a sensory retreat area with weighted blankets and fidget toys. A dedicated space for caregivers with a fold-out bed or recliner and storage for personal items is also included. Therapeutic activity space with occupational and speech therapy tools and interactive technology like tablets with communication apps supports the child's needs. The design incorporates environmental controls such as adjustable temperature and calming wall colors, with windows with blinds or shades to control natural light. Medical equipment is accessible but discreetly stored to reduce visual clutter. A family support area also provides private meeting space and resources on autism spectrum disorder and emergency care. This design aims to reduce anxiety, manage sensory sensitivities, and support effective medical care and family involvement.
Table 13 Ideal intensive care unit design for caring for children with autism spectrum disorder.
Aspect
Elements
Description
Sensory-friendly environment
Adjustable lighting
Dimmable, soft, indirect lighting; natural light with blinds/shades
Noise reduction
Soundproofing materials, quiet alarms, and communication systems
Calm color scheme
Soft blues, greens, and neutrals; avoid bright, contrasting colors
Controlled climate
Adjustable temperature controls
Safe spaces
Designated areas with sensory-friendly items like weighted blankets and soft seating
Private rooms
Individualized spaces
Private rooms or areas spacious enough for caregivers
Personalization
Allow familiar items from home like toys, blankets, and pictures
Communication enhancements
Visual supports
Communication boards and visual aids with pictures, symbols, and words
Technology integration
Tablets with communication apps/tools for non-verbal/Limited verbal children
Measures to prevent wandering while allowing caregiver/staff access
Comfort items
Sensory-friendly items like weighted blankets, fidget toys, noise-canceling headphones
Family involvement
Caregiver accommodation
Space for caregivers to stay (e.g., fold-out bed, recliner)
Family areas
Dedicated areas for caregivers to rest, eat, take breaks
Family support services
Spaces for counseling and family conferences
Medical and therapeutic spaces
Therapy rooms
Spaces for occupational, physical, and speech therapy with sensory-friendly tools
Medical Equipment
Quiet infusion pumps and monitors with dimmable displays
Emergency preparedness
Crisis intervention spaces
Areas equipped with sensory-friendly calming tools and trained personnel
Emergency plans
Accessible emergency plans with visual guides for procedures
Collaboration and training areas
Staff training rooms
Spaces for ongoing ASD-specific care strategy training
Collaboration spaces
Areas for interdisciplinary team meetings and care coordination
Review of case studies and their impact on care practices
Case studies serve as a crucial resource for understanding the challenges and successes in managing critical care emergencies in children ASD[114]. These real-world examples provide valuable insights that help refine care practices and protocols, highlighting both effective strategies and areas for improvement[115]. By illustrating specific scenarios and their management, case studies offer practical lessons that healthcare providers can relate to and implement in their practice. Through the analysis of case studies, best practices can be identified and incorporated into standardized protocols[116]. Effective strategies for communication, behavioral management, pain assessment, and other aspects of care can be shared among healthcare teams to enhance overall care quality[117]. Case studies also shed light on common challenges in managing children with ASD, such as communication barriers, sensory sensitivities, and behavioral complexities[118]. Understanding these challenges enables the development of targeted interventions and training programs tailored to the unique needs of these children.
The impact of case studies extends to the evolution of care protocols. Feedback and outcomes derived from case studies provide a basis for refining protocols, ensuring they are more responsive to the needs of children with ASD in emergency settings[119]. These studies underscore the importance of a multidisciplinary approach, showcasing the roles of various team members and the significance of collaboration and communication in achieving positive outcomes[120]. Furthermore, reviewing case studies fosters a culture of continuous improvement within healthcare settings. By encouraging providers to reflect on their practices, seek feedback, and adjust, case studies enhance care quality[121]. Documenting both successes and challenges within these studies provides a comprehensive understanding of the complexities of managing ASD in critical care, offering a balanced perspective that aids in strategy development[122].
Case studies also play a pivotal role in guiding future research. They identify knowledge gaps and areas requiring further investigation, prompting innovation and evidence-based advancements in care approaches[123]. By serving as a bridge between real-world experiences and clinical research, case studies ensure that care practices remain dynamic, informed, and responsive to the evolving needs of children with ASD.
Here are some case scenarios for children with ASD who need Emergency care (Names are not real).
Case study 1: Managing sensory overload during an emergency. John is an 8-year-old male with ASD with a history of bronchial asthma. John arrived at the ED in acute respiratory distress due to a severe asthma attack. His mother informed the medical team that John has significant sensory sensitivities, particularly loud noises and bright lights, which can trigger severe anxiety and behavioral outbursts. A quick, efficient assessment was conducted in a calm manner. The team used simplified language and minimal physical touch to avoid overwhelming John (initial assessment). The lights in the examination room were dimmed, and the noise levels were reduced by limiting unnecessary conversations and alarms. John was provided with noise-cancelling headphones to minimize auditory stimuli (environment modification). The team communicated with John using short, simple sentences. His mother was involved in explaining the procedures and comforting him. John’s favorite toy, brought from home, was given to him for comfort (communication and comfort). Bronchodilator treatment was administered using a metered-dose inhaler with a spacer, which John is more familiar with than a nebulizer. Continuous monitoring was done with minimal physical restraint to avoid triggering further anxiety (treatment). John’s condition stabilized, and he was transferred to a quieter observation area. A follow-up plan was discussed with his mother, including strategies to manage future emergencies while considering his sensory sensitivities (outcome).
Case study 2: Behavioral de-escalation in a pediatric ICU (PICU). Emma is a 12-year-old female with ASD. She was transferred to the PICU for post-operative recovery following appendectomy. Emma was recovering from an emergency appendectomy. She woke up agitated and disoriented, displaying signs of a meltdown, including screaming, self-injurious behavior, and resistance to medical staff.
The team reviewed Emma’s behavioral plan and history of previous hospitalizations. Then, a quiet room with minimal sensory stimuli was prepared (preparation). The team used de-escalation techniques, such as speaking calmly, using low voices, and giving Emma space. Visual aids were used to explain what was happening and what would happen next, reducing her anxiety. Emma’s mother was called to be with her, as her presence was calming for Emma (behavioral de-escalation). A schedule of care activities was created and displayed using visual supports. The team informed Emma before each procedure, maintaining a predictable routine (predictability and structure). Pain was assessed using a VAS tailored for children with ASD. Pain management included both pharmacological (acetaminophen) and non-pharmacological (comfort positioning) methods (medical management). Emma calmed down and cooperated with the medical team. She was closely monitored with periodic checks, and her recovery progressed smoothly. A discharge plan included strategies for managing post-operative care at home (outcome).
Case study 3: Communication strategies during an emergency seizure. Alex is a 10-year-old male with ASD and epilepsy. The seizure types are usually generalized tonic-clonic seizures. Alex experienced a generalized tonic-clonic seizure at home. His parents called Emergency Medical Services (EMS), and he was transported to the emergency department (ED). Alex has difficulty communicating verbally, especially during stress.
Paramedics trained in ASD-specific communication strategies arrived at the house. They used a calm, soothing tone and avoided loud, sudden noises. Visual supports were used to explain the transport process to Alex’s parents and Alex if he becomes aware (EMS response). On arrival at the ED, Alex was assessed using minimal physical restraint. The ED staff used simplified language and visual aids to explain procedures to Alex and his parents. His parents were involved in providing medical history and calming Alex (ED assessment). The ED environment was modified by dimming lights and reducing noise. Alex was allowed to hold a familiar object (a stuffed animal) for comfort (sensory sensitivities). Anti-seizure medication was administered, considering Alex’s known sensitivities and previous responses to medication. Continuous monitoring was conducted with minimal interference to avoid sensory overload (medical management). Alex’s seizure was controlled, and he regained consciousness without severe agitation. The team developed a follow-up plan, including a review of seizure triggers and preventive strategies. Alex’s parents were provided with educational materials on managing seizures and when to seek emergency care (Outcome and follow-up).
Case study 4: Managing transition during a complex procedure. Sophie, a 9-year-old girl with ASD and a history of gastrointestinal issues, was admitted to the ED for an emergency endoscopy due to severe abdominal pain. She has a strong aversion to medical procedures and changes in routine.
Upon arrival, Sophie displayed signs of significant distress, including crying and resistance to medical staff. The team quickly assessed her baseline behaviors and noted her sensitivity to changes in routine and medical equipment (initial assessment). The examination room was prepared to minimize stress by using soft, ambient lighting and reducing noise levels. Sophie’s favorite calming music was played through headphones to help soothe her anxiety. A visual schedule explained the procedure step-by-step (environment modification). Sophie’s caregivers were involved in the process, explaining each step calmly and reassuringly. A familiar comfort item, a blanket, was used to provide reassurance. During the procedure, Sophie was allowed to choose a small toy to hold (communication and comfort). The endoscopy was performed with Sophie in a calm, quiet environment, and a sedative was administered with careful monitoring. The team used a gentle approach, minimizing physical restraint and ensuring clear, consistent communication (treatment). Sophie tolerated the procedure well and was less agitated than anticipated. A follow-up plan included recommendations for managing anxiety related to future procedures and strategies for maintaining routine stability at home (outcome).
Case study 5: Handling severe allergic reaction in the ICU. Michael, a 6-year-old boy with ASD and known food allergies, was admitted to the PICU after experiencing an anaphylactic reaction to a food allergen. He has a limited verbal communication ability and exhibits strong food aversion.
Michael arrived in the ICU with symptoms of severe distress, including difficulty breathing and swelling. His medical history indicated a history of severe food allergies, which were crucial for managing his condition (initial assessment). The ICU team immediately implemented a low-stimulation environment by dimming lights and reducing noise. The team ensured that all potential allergens were removed from the vicinity (environment modification). Michael’s caregivers provided crucial information about his allergies and preferred methods of communication. A visual aid with simple images and words explained his treatment plan. A soothing, familiar object was provided for comfort (communication and comfort). Epinephrine was administered promptly, and Michael was closely monitored for any signs of improvement or further reactions. The team maintained a calm demeanor and used clear, non-threatening language throughout the process (treatment). Michael’s allergic reaction was managed effectively and stabilized with minimal additional complications. A detailed discharge plan was developed, including an updated allergy action plan and recommendations for managing allergens in future situations (outcome).
These case studies illustrate the importance of tailored approaches in managing critical care emergencies for children with ASD, focusing on sensory sensitivities, behavioral challenges, effective communication, and multidisciplinary care.
Recommendation
Based on the review of case studies and the criteria for an ideal ICU for children with ASD, several recommendations can enhance the management of critical care emergencies in this population. Sensory-friendly modifications are essential, including adjustable, soft, and dimmable lighting, soundproofing to minimize medical equipment noise, and calming colors such as blues, greens, and neutrals. Designating sensory retreat areas equipped with items like weighted blankets and soft seating can help children manage sensory overload. Communication and comfort can be improved by providing private rooms that allow personalization with familiar items from home and supplying communication boards, visual aids, and technology like tablets with communication apps. Visual information boards displaying daily schedules and procedures can help children anticipate and understand activities. Ensuring safety and family involvement is crucial; adopting non-invasive monitoring techniques, implementing measures to prevent wandering, and providing sensory-friendly comfort items like weighted blankets, fidget toys, and noise-canceling headphones can enhance comfort and security. Including space for caregivers to stay with the child, offering dedicated family areas within the ICU, and developing spaces for family support services are also important. Integrating therapeutic and crisis intervention services involves equipping spaces for occupational, physical, and speech therapy with sensory-friendly tools and using or modifying medical equipment to reduce noise and visual stimuli. Designating areas for crisis intervention that are equipped with calming tools and staffed by trained personnel and ensuring each room has clear, accessible emergency plans tailored to the needs of children with ASD, including visual guides for emergency procedures, are also recommended. Prioritizing staff training and interdisciplinary collaboration by providing ongoing ASD-specific training for staff, creating dedicated spaces for training, and facilitating regular interdisciplinary team meetings can ensure effective communication and coordination. Promoting case study reviews and protocol development by regularly reviewing and analyzing case studies to identify best practices, common challenges, and areas for improvement and integrating these findings into care protocols and training programs can foster continuous improvement. Encouraging a multidisciplinary approach to care, emphasizing collaboration and communication among team members, and developing targeted interventions and training programs based on common challenges identified in case studies, such as communication difficulties, sensory sensitivities, and behavioral issues, can significantly improve care outcomes and experiences for children with ASD and their families.
Limitations
Despite the numerous strategies and recommendations outlined for managing critical care emergencies in children with ASD, several limitations must be acknowledged. First, the heterogeneity of ASD means that each child’s needs and responses can vary significantly, making it challenging to develop one-size-fits-all protocols. While case studies provide valuable insights, they may not capture the full spectrum of ASD manifestations, limiting the generalizability of their findings. Additionally, implementing sensory-friendly modifications and specialized equipment in ICUs can be costly and require significant financial investment and institutional commitment, which might not be feasible in all healthcare settings.
Furthermore, training healthcare staff in ASD-specific strategies demands time and resources, and ensuring consistent application of these strategies across all team members can be difficult. The reliance on caregivers to provide insights into the child’s preferences and behaviors also assumes their availability and willingness to participate, which might not always be possible due to various factors such as caregiver stress or absence. The integration of multidisciplinary teams, while beneficial, can also present logistical challenges, including coordinating schedules and ensuring effective communication among diverse professionals. Lastly, while reviewing and analyzing case studies can guide practice improvements, the lack of standardized reporting and the potential for publication bias might limit the robustness of the evidence base. These limitations highlight the need for ongoing research, resource allocation, and flexible, individualized approaches to care for children with ASD in critical care settings.
CONCLUSION
This comprehensive literature review underscores the multifaceted challenges and critical considerations involved in managing critical care emergencies for children with ASD. The evidence highlights the importance of adopting a multidisciplinary approach that integrates medical, behavioral, and sensory considerations to improve outcomes and enhance the overall experience for these children. Effective management requires tailored communication strategies, individualized care plans, and adaptations to the critical care environment to address the unique sensory sensitivities and behavioral needs of children with ASD. The review also emphasizes the value of case studies in refining care practices and protocols, revealing practical insights into successful strategies and areas for improvement. Despite advancements in protocol development and staff training, ongoing research and continuous evaluation are necessary to address the limitations identified and further optimize care. Ultimately, implementing a holistic, patient-centered approach that prioritizes both medical and emotional needs will contribute to better management of critical care emergencies in children with ASD, fostering improved health outcomes and providing a more supportive, compassionate care experience.
Footnotes
Provenance and peer review: Invited article; Externally peer reviewed.
Peer-review model: Single blind
Corresponding Author's Membership in Professional Societies: University Medical Center, King Abdulla Medical City; Arabian Gulf University, Bahrain; Faculty of Medicine, Tanta University, Egypt.
Specialty type: Critical care medicine
Country of origin: Egypt
Peer-review report’s classification
Scientific Quality: Grade C
Novelty: Grade B
Creativity or Innovation: Grade B
Scientific Significance: Grade B
P-Reviewer: Ye S S-Editor: Liu H L-Editor: A P-Editor: Guo X
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