Hrev_master [page 30] [Emergency Care Journal 2025; 21:13366] Emergency Care Journal 2025 volume 21:13366 Abstract Children with Autism Spectrum Disorder (ASD) face unique challenges when receiving emergency and inpatient care, including sensory sensitivities, communication barriers, and anxiety-indu- cing changes in routine. In Saudi Arabia, these challenges are com- pounded by factors such as limited public awareness, delayed dia- gnoses, and limited resources. This review explores the prevalence of ASD in Saudi Arabia, the primary obstacles to effective heal- thcare, and strategies for improving emergency care and hospitali- zation experiences for children with ASD. The article highlights the importance of individualized care plans, sensory adaptations, and culturally informed staff training to support ASD patients and their families in emergency and hospital settings. Introduction Autism Spectrum Disorder (ASD) is a neurodevelopmental condition marked by challenges in social communication, restrict- ed interests, and repetitive behaviors.1 The diagnosis is challenging as there are no definitive blood tests or biomarkers; diagnosis relies on observing the child’s behaviors.2 Children with ASD are often easily distracted and experience anxiety due to sensory over- load and environmental stimuli. They require extra time to process sensory input and may exhibit delayed or unpredictable responses. They often coexist with other mental health conditions, such as Attention Deficit Hyperactivity Disorder (ADHD), social anxiety disorder, depression, and intellectual disability.3 This comorbidity complicates disease observation, monitoring, and management, making it more challenging to provide effective care and interven- tion. While individuals with ASD often have no physical differ- ences from others, they require specialized approaches to learn and communicate effectively. ASD varies in severity; some individuals may have a milder form that requires minimal support, while oth- ers may need substantial assistance. In Arab Gulf countries, prevalence estimates range from 1.5 to 29 individuals per 10,000 people.4 In Saudi Arabia, autism preva- lence data is limited, raising concerns that many individuals with ASD go undiagnosed.5 Despite general awareness, there is a lack of understanding about ASD manifestations, with a common belief that symptoms may be outgrown with suitable interventions.6,7 Furthermore, having an ASD child adds to family stress, leading to elevated levels of depression, anxiety, and overall stress.8 Autistic individuals have a suicide attempt and mortality rate approximate- ly three times higher than the general population.9 Early diagnosis is critical, as it supports better outcomes, improving verbal, cogni- tive, and communication skills, along with problem-solving abili- ties and physical development. Although ASD has no single cure, medical complications can delay treatment due to verbal, social, and intellectual challenges. Sensory sensitivities and communication difficulties often hinder therapy acceptance, increasing anxiety and noncompliance. Sensory-friendly settings and visual tools can improve patient engagement. This review explores hospital and emergency chal- lenges and strategies to enhance ASD patient care. Challenges in providing care for children with ASD Healthcare providers frequently encounter challenges when treating patients with ASD due to a limited understanding of autism-specific needs and behaviors. Many hospital staff, inclu- ding doctors and nurses, may lack sufficient training to manage the distinct sensory, communication, and behavioral requirements of ASD patients.2 This knowledge gap can lead to increased anxiety in patients and difficult interactions for both caregivers and heal- thcare providers. Healthcare providers may struggle with commu- nication barriers, sensory sensitivities, and atypical behavioral responses that ASD patients may exhibit in response to standard medical routines.10 Many hospitals now offer targeted training pro- grams to enhance provider knowledge. These programs aim to build ASD-specific skills, such as direct communication, sensory Correspondence: Shafiqa M. Al Sharif, Department of Emergency Medicine, Faculty of Medicine, King Abdulaziz University, Kingdom of Saudi Arabia. E-mail: halshrif@kau.edu.sa Key words: autism; emergency; hospitalization; challenging behav- ior; strategies. Conflict of interest: the author declares no potential conflict of interest. Ethics approval and consent to participate: not applicable. Consent for publication: not applicable. Received: 10 November 2024. Accepted: 27 February 2025. Early view: 21 March 2025. This work is licensed under a Creative Commons Attribution 4.0 License (by-nc 4.0). ©Copyright: the Author(s), 2025 Licensee PAGEPress, Italy Emergency Care Journal 2025; 21:13366 doi:10.4081/ecj.2025.13366 Publisher's note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. Challenges in managing children with autism spectrum disorder in emergency and hospital settings: strategies for effective care Shafiqa M. Al Sharif Department of Emergency Medicine, Faculty of Medicine, King Abdulaziz University and Hospital, Jeddah, Saudi Arabia adjustments, and collaboration with caregivers to address each patient’s unique needs.11 Providing care for patients with ASD is particularly challen- ging, especially in school and healthcare settings like hospital emergency. Effective care requires government funding, strategic healthcare planning, public awareness, and parental counseling. The government plays a crucial role in raising ASD awareness and supporting families with autistic children. Funding is essential for preschools to hire additional staff to meet these children’s needs, and more resources should be allocated to services for special needs and education.12,13 Children with ASD frequently display behaviors like repetitive actions, strong attachments to objects, and sensory sensitivities, which can intensify in stressful environments such as emergency departments (EDs). Dann et al. observed that the ED environment can be particularly overwhelming for ASD children, who may exhibit hypersensitivity to stimuli, resulting in challenging beha- viors and increased distress.14 Communication difficulties are a core aspect of ASD, posing barriers to effective healthcare delive- ry. Many children with ASD have limited verbal skills or rely on alternative communication methods, requiring tailored approaches to facilitate interaction.15 Autism in emergency hospital care Reasons for emergency visits Given that the ED often serves as the most critical point of healthcare delivery – and, for many, the only point of contact with healthcare services – it is essential to document the extent of ED use among patients with high healthcare needs and those at increa- sed risk of frequent visits.14,15 There is limited comprehensive data on ED visit patterns among autistic patients. However, ASD patients tend to visit EDs more frequently than their neurotypical peers, often due to co-occurring medical or psychiatric conditions. Adults with ASD are twice as likely to visit the ED compared to non-ASD adults.16,17 Vohra et al. reported that ED visits among adults with ASD increased from 2,500 to 6,000 per 100,000 ED visits over five years.18 In a South Korean study by Park et al., around 1,420 individuals with autism visited the ED between 2006 and 2021, with a mean age of 18 years.19 Children with ASD often present to EDs for gastrointestinal, respiratory, genitourinary, neu- rological, behavioral, or psychiatric issues.20 Less common causes of emergency visits include conditions like otitis media, while schizophrenia and pneumonia accounted for 70% of hospital admissions among autistic children in South Korea.19 Emergency experiences can worsen physical and mental health issues in some children with ASD, as they are exposed to various unfamiliar stimuli that can exacerbate their condition during emer- gency room (ER) admissions.21 This is less common in children under 6 years, who are typically admitted to the ER less frequently and are less impacted by the ER environment. Studies show mixed results regarding ER admissions in children under 6, with some indicating more visits, while others suggest that ASD children in this age group are less likely to visit the ER overall.21 Approximately 15% of adults with ASD have psychiatric ER visits compared to only 4% of adults without ASD, and psychiatric visits are more frequent than non-psychiatric visits among adults with ASD.22 This trend reflects the prevalence of challenging behaviors in this population, such as aggression, self-harm, and disruptive behaviors.22 While adults with ASD generally have lower rates of drug and alcohol use, those on the higher-functioning end of the spectrum may use alcohol to manage social challenges.23 Vohra et al. found that epilepsy, schizophrenia, and depression are the most common reasons for ER visits among adults with ASD.18 Injury- related visits are lower in adults with ASD compared to those without ASD, but a larger proportion of adults with ASD visit the ER for injury related to poisoning.18 Around 7% of patients with suicidal emergencies have ASD, and those with ASD exhibit higher rates of adjustment disorders and longer Intensive Care Unit (ICU) stays than their non-ASD counterparts.24 Additionally, older adults with ASD are more likely to have non-psychiatric comorbidities such as diabetes, cardiovascular disease, and high cholesterol.25 Challenges faced by autistic patients in ED Parent satisfaction with ED care for children with ASD is clo- sely linked to staff communication and interpersonal skills, parti- cularly regarding communication between staff members and the child with ASD. Unfortunately, non-psychiatric conditions in adults with ASD often receive limited attention in ED settings. Due to communication challenges faced by some adults with ASD, pro- viding effective care in the ED – especially for injuries – can be difficult for primary care providers. Limited access to trained pri- mary care or specialized facilities may also contribute to higher ED utilization rates among this population.26 A lack of awareness of treatment guidelines and potential delays in care due to restric- ted access place adults with ASD at substantial risk for frequent ED visits. Common complaints reported by families include ER crowding, excessive noise, prolonged wait times, and limited staff understanding of ASD. Children with psychiatric issues may find the ER particularly challenging due to sensory overload. Long waits, sensory stimuli in the ER, communication challenges with healthcare professionals, physical exams, and discomfort in the ED setting can create difficulties for both ASD and neurotypical chil- dren.27 In a survey by Kopecky et al. of 80 parents of children with ASD who had experienced acute hospitalization, sensory challen- ges such as loud noises (40%), touch (25%), and food sensitivities (15%) were reported.28 Language difficulties and cognitive impair- ments further limit ASD children’s ability to understand emergen- cy interventions during these situations. Such factors may deter families from bringing their children with ASD to the ER or, con- versely, lead to frequent visits, largely influenced by parents’ edu- cation and awareness. Lack of parental education and knowledge may delay ER visits for children. However, this trend is not consi- stent across studies. For instance, a study by Bilginer et al. in Turkey found that mothers with at least a high school education were more likely to bring their children to the ED more than three times compared to mothers with lower education levels.29 This may reflect cultural differences. Additionally, emergency costs pose another barrier, as the ave- rage expense for an ED visit involving suicidal ideation is signifi- cantly higher for ASD patients compared to those without ASD.18 Individualized care plans, family contribution, and autism care plans (ACP) Patient care and workflow are critical concerns in the ED, especially for children with ASD. Families are encouraged to enga- ge in care and decision-making to the extent they wish, enhancing the quality of care during ER visits. To improve healthcare for auti- stic children in the ER, healthcare professionals and executive teams should address issues reported by families during visits (Table 1). Providers often describe the ED as “a challenging place for any child with ASD”, filled with sensory triggers that can cause distress and complicate care. While these factors do not discourage Review [Emergency Care Journal 2025; 21:13366] [page 31] parents from seeking ER care, they highlight the need for hospitals to create a supportive environment for children with ASD. Dignity and respect in care delivery require a person-centered approach and increased staff awareness about ASD.30 Understanding ASD prevalence is essential to grasp how it affects healthcare service utilization and burdens the healthcare system.31 Patient- and Family-Centered Care (PFCC) embodies dignity, respect, family involvement in child care, and information sharing. Nicholas et al. utilized PFCC as a benchmark for developing ASD- sensitive care in the ED, noting that listening to families led to positive ED encounters.30 Achieving PFCC involves incorporating patient and family advisors into care planning, including children with ASD and parents who can share their experiences and insights within local healthcare contexts. Using a quality improvement fra- mework, Pratt et al. found that implementing a pre-admission checklist tailored to these needs and designating a staff member for follow-through improved hospital experiences for children and families.32 McGonigle et al. developed training workshops for emergency medical technicians, paramedics, and ED nursing staff that increased general knowledge about ASD, dispelled myths, rai- sed awareness of common medical issues leading to ED visits, and provided assessment and management guidance for treating ASD patients in the ED.11 Strategies for improving emergency care for patients with ASD Four critical issues were identified as essential to the care experience for patients with ASD. Care quality suffered when these areas were neglected but addressing them significantly improved outcomes. The key areas included: i) communication between parents and healthcare providers; ii) the sensory environ- ment; iii) flexibility in accommodating the unique needs of chil- dren with ASD; and iv) the ED team’s knowledge and ASD-speci- fic skills, bolstered by training and connections with a wider net- work of professionals. Autism Care Plans (ACPs), which are crea- ted with parental input, have demonstrated effectiveness in enhan- cing the hospital experience for children with ASD.33 ACPs provi- de details on a child’s preferences, triggers, and calming strategies, allowing healthcare providers to offer personalized care. Parents using ACPs reported significantly better overall hospital experien- ces (p<.001).33 Effective communication techniques Effective communication is essential for successful interac- tions with ASD patients. The first step in engaging with an ASD child should be to gather information from parents or caregivers on how the child communicates. Visual aids, simplified language, and familiar objects can help bridge communication gaps. Receptive and expressive language abilities vary widely among children with ASD; some may have limited or no language skills, while others can provide detailed descriptions of their experiences.15 Although disclosing a child’s ASD diagnosis in the ED can help meet their specific needs, some parents may hesitate due to concerns about stigma or discomfort discussing the diagnosis in front of their child.21 This lack of disclosure can hinder effective care, as provi- ders may be unaware of the child’s requirements. Parents possess unique insights into their child’s preferences, aversions, and pre- ferred communication methods, offering invaluable guidance for healthcare providers. Consulting caregivers to identify the most effective communication strategies for each child is crucial, parti- cularly in observing non-verbal cues when children have limited verbal skills.10 Additionally, assessing anxiety and stress levels during interactions can improve care. Research indicates that children with ASD may understand more than they can express, emphasizing the importance of using varied communication strategies.34 Involving parents and care- givers in communication is key to effective care, as they are true “experts” on their children’s needs. Speaking with caregivers gives healthcare providers insights into the accommodations that might benefit each child. A parent “checklist” to inquire about behavioral triggers, sensory responses, and communication needs can facilitate communication between families and medical staff in the ED.32 Further research on the impact of such information-sharing on building trust and therapeutic relationships is valuable. Additional communication methods, such as picture boards, the Picture Exchange Communication System (PECS), or electronic devices like iPads, can also support effective interaction. For many children with ASD, their ability to understand may exceed their ability to express, making tailored communication methods essential. Environmental and sensory modifications When caring for an individual with ASD who has sensory issues, it’s essential to gather information on their daily living style, skills, communication methods, and sensory needs in addi- tion to their general history. One effective strategy for supporting children with ASD in the ED and reducing their challenges is the Review Table 1. Summary of modification strategies for emergency room visits. 1. Identify children with ASD at triage, minimize wait times, and provide a separate, quiet waiting area with dim lighting. 2. Customize protocols specifically for ASD patients. 3. Use pre-admission social stories to prepare the child effectively. 4. Whenever possible, assign staff members who are familiar to the child. 5. Slow the pace of care procedures, breaking them into manageable steps and allowing time for the child to process each step individually. 6. Use silent monitors in rooms or spot-check vital signs, as opposed to continuous monitoring, when safe alternatives exist. 7. Implement visual supports, such as well-designed picture cards. If suitable, let the child view and understand the medical instruments and materials. 8. Collaborate closely with family caregivers and engage a multidisciplinary team, including occupational therapists or child life specialists, who can provide sensory tools like chewable items to distract during procedures. Calming techniques include weighted blankets, gentle pressure with an exercise ball over arms, legs, and trunk, or slow rocking in a chair. 9. Administer pain management early, especially before blood draws or IV insertions. A Lidocaine-based topical cream can be applied 30 minutes before these procedures. Assessing pain in non-verbal ASD children can be challenging; modified tools, such as a visual analog scale marked from 1-10, allow the child to indicate their pain level. Consistent use of the same tool by all healthcare team members is essential for reliable pain assessment. [page 32] [Emergency Care Journal 2025; 21:13366] use of sensory items.35,36 These items can help children with ASD focus and relax in unfamiliar settings. Adapting the hospital envi- ronment to minimize sensory overload is vital for these patients. Sensory toolkits – featuring items such as noise-canceling head- phones, weighted blankets, and fidget toys – have been shown to reduce anxiety in ED settings.37 The sensory kit is available only when child life staff are present in the ED. Additionally, providing quiet rooms or dimmed lighting further supports ASD patients. Based on these findings, conducting clinical evaluations in quieter, darker areas and ensuring physical safety during procedures can significantly improve the experience of children with ASD and their families during ED visits.38 The Alberta Children’s Hospital ED developed a sensory tool- kit containing various sensory items for children with autism, hypothesizing it would enhance care for them and their families.37 As part of a quality improvement project, a 24/7 sensory toolkit was created for individual use and designed to be portable, allo- wing it to accompany patients throughout their ED stay. Feedback from caregivers indicated that while some sensory items were age- inappropriate for certain children, others found these items helpful. Staff trained in ASD-specific needs can implement these modifica- tions more effectively, improving patient care and comfort.10,34 Deficits in social connection for individuals with ASD involve significant challenges in using nonverbal cues in social interac- tions, forming peer relationships, sharing interests, and demonstra- ting social/emotional reciprocity. A meta-analysis of social skills training interventions indicated that children with ASD could improve their social skills, though further research is needed on the sustainability of these improvements.32 Challenges and care plan for ASD with suicidal attempts and ideation ED visits for suicidal ideation and self-harm are more common among autistic youth compared to their non-autistic peers.39 However, EDs are often not optimally designed to support autistic individuals experiencing suicidal thoughts. For example, EDs con- tain sensory triggers that can be distressing, have extended wait times and time constraints during evaluation and treatment, and lack predictability regarding the visit process.10 A study by Mournet et al. found that while suicide risk screening was suppor- ted by both individuals with neurodevelopmental disabilities and their therapists, barriers such as limited training and the absence of a validated screening tool for this population hindered effective assessment.40 Key factors contributing to suicidal symptoms inclu- de interpersonal challenges (like bullying), medication adju- stments, and insufficient support systems.39 Miscommunication between youth and providers can leave patients feeling misunder- stood and may reduce their willingness to disclose suicidal sym- ptoms, thereby impacting the effectiveness of care. These commu- nication issues are often due to unclear language, lack of context, and insufficient specificity. Additionally, many psychiatric evalua- tions and suicide risk management approaches rely on emotion recognition and expression, which can be challenging for autistic youth. In cases of emotional dysregulation, clinicians are encoura- ged to remove demands, allow space for the individual, and impro- ve verbal communication. Systems-level challenges also contribu- te to the onset and progression of suicidal issues. Limited availabi- lity of necessary support services after discharge further complica- tes effective follow-up care. In the absence of specific suicide risk assessment tools and evidence-based management strategies for autism, it is essential to provide clinicians with internal guidelines to support the implementation of recommended suicide-related care for autistic youth. Conclusions Children with ASD face numerous challenges in emergency and inpatient settings. 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