People with Autism Spectrum Disorder (ASD) face significant health care disparities and stigma in accessing appropriate care, contributing to markedly reduced life expectancy. Research indicates that autistic individuals experience premature mortality at rates two to ten times higher than the general population (Hirvikoski et al., 2016). Additionally, these patients face well-documented barriers to health care, including communication challenges, sensory sensitivities, and systemic issues like limited time and resources (Mason et al., 2019; Walsh et al., 2020). These barriers are linked to poorer health outcomes (Doherty et al., 2022).
This disparity exists in pediatric health care as well. The American Academy of Pediatrics (AAP) reports that autistic children are significantly less likely to have vision screenings by their pediatrician, and this number decreases if the patient is also a racial minority (Hoover et al., 2023). The AAP also reported in their clinical report on oral health care for children and youth with developmental disabilities that patients with developmental disabilities are more likely to have unmet health care needs and higher reports of dental disease (Sarvas et al., 2024). Patients often struggle to tolerate health care encounters if their communication and sensory preferences are not addressed or considered. Not adapting care to better support autistic individuals not only perpetuates these disparities but there is also research supporting that autistic children who are hospitalized have significantly higher odds of restraint than their peers without autism (Calbrese et al., 2024). As these challenges arise and continue, autistic individuals are less likely to seek health care.
When autistic adults are interviewed about their experiences in the health care setting, they report discrimination and barriers to care due to communication challenges and overwhelming sensory experiences. In one study looking at autistic adults reports on their transition to adult care, one of the challenges was health care providers would either ignore the patient or address and talk to the support person instead of the patient directly (Keller et al., 2024). These patients were dismissed because of their diagnosis instead of being empowered to share their needs and health care journey directly with their provider.
In another study on autistic adults’ experiences with eye exams, the interviewees shared that it was hard to meet lots of different people; there were too many transitions between rooms, and the sensory experience of bright lights and touching the face could be overwhelming (Parmar et al., 2022). These adults offered practical suggestions for easy adaptations to care that could be made to support autistic adults who needed an eye exam. Their suggestions were to help adults prepare, including explaining the testing in detail, warning patients about the bright lights, and offering breaks when the patient felt overwhelmed. They also created quiet times in the waiting room or offered private and quiet areas during the visit (Parmar et al., 2022). Patients need health care providers to provide these adaptations of care and create judgement-free spaces where individuals feel safe to stim so that they can regulate and calm themselves when they are feeling overwhelmed.
Health care providers often lack consistent training and understanding of ASD, contributing to stigma, misassumptions, and limited support for preferred communication methods (Zerbo et al., 2015; Unigwe et al., 2017). Many providers feel unprepared to care for patients with autism, citing inadequate training and systemic constraints (Mason et al., 2019). In a study that interviewed nursing staff on how to best support autistic patients, the staff reported the need for more education and autism-specific training (Fraatz & Durand, 2021). Providers want to support these patients, but they are often not equipped or empowered to provide helpful adaptations to care. The AAP, in their consensus statement on Health Care for Youth with Neurodevelopmental Disabilities, calls that all people are entitled to health care that is accessible, humane, and effective (Weitzman et al., 2024). But how do we prepare our providers and empower them to best support our autistic patients?
One way to support autistic patients is through preparation, preparing the patient, but also preparing the staff. In the study on eye exams on autistic adults, many participants reported that preparation about what to expect for the visit, such as pictures or a video, would have been helpful (Parmar et al., 2022). These autistic adults report knowing what steps would happen and in what rooms helped decrease their anxiety and increase their tolerance for the steps of the eye exam. Temple Grandin spoke to nurse practitioners about supporting autistic patients and encouraged them to prepare patients for medical procedures (Dunlap, 2024). Temple Grandin encourages providers to “take time to just explain things and no surprises, that’s probably the best advice” (Dunlap, 2024). By providing written preparation, visual support in the form of pictures and images, verbal explanations, and demonstration with real medical items, health care providers can help autistic patients cope with health care encounters by preparing them for what to expect.
Another support that health care providers can do is provide sensory adaptations. These can be simple in the form of dimming the lights, quiet voices or limited talking, and limiting touching the patient as much as possible. Sensory adaptations can also be more structured interventions like adaptive sensory environments or sensory rooms. Sensory rooms have been found to decrease anxiety, reduce pain and discomfort, and overall support positive coping in health care settings (Shaprio et al., 2009; Cermak et al., 2015; Fallea et al., 2022). Simple sensory adaptive strategies to support autistic individuals in health care settings are discussed in the article Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings (Doherty 2023), highlighting practical approaches to reduce sensory overload and improve patient comfort. By offering sensory items such as headphones, sunglasses, weighted blankets, and sensory toys, providers can meet the sensory needs of patients and, in turn, promote relaxation and positive coping in their patients.
Patients themselves and caregivers can be the greatest resource in how to support autistic patients. By creating individualized plans with patients and their families, health care providers can identify exactly what kinds of adaptations to care are most helpful for each patient. In a study looking at pediatric patients with individualized care plans, researchers found that patients with care plans exhibited fewer challenges with anxiety and coping than those without care plans (Liddle &Sonnentag, 2022). The AAP encouraged that individual care plans be made prior to hospital visits to ensure that patients are best supported for those visits (Weitzman et al., 2024). These care plans might include helpful information like a patient’s triggers, communication preferences, sensory sensitivities, and helpful coping strategies. Every autistic patient is different, so it’s important that health care providers work directly with each patient and family to identify what adaptations to care might be most helpful for them.
Stimming, or self-stimulatory behavior, is a natural and often essential coping mechanism used by many neurodivergent people. These behaviors—such as hand-flapping, rocking, repeating phrases, or using objects in rhythmic or repetitive ways—serve important functions, including reducing anxiety, increasing internal regulation, and addressing sensory needs. When interviewed about stimming behaviors, a group of autistic adults shared that stimming helped them regulate when they are experiencing sensory overload, but that same group reported that they often suppress stims due to stigma (Charlton et al, 2021). It is critical that medical providers recognize stimming as a valid form of self-regulation rather than a symptom to be suppressed. Unless a behavior poses a clear danger to the individual or others, it should be respected and permitted. Efforts to stop or discourage harmless stimming can lead to increased stress, emotional dysregulation, and harm to the individual’s well-being.
Advocating for oneself and their sensory needs and accommodations in health care is essential to ensure that medical environments are accessible and equitable to all patients. Tools like the My Health Passport from the National Autistic Society provide a personalized way for individuals to share important information about their sensory preferences, communication styles, and necessary accommodations with health care providers. Similarly, the AASPIRE Autism Healthcare Accommodation Tool offers a structured approach for individuals to identify and request specific accommodations, empowering them to actively participate in their health care decisions. By utilizing these resources, individuals can advocate and promote understanding in collaboration with medical professionals, leading to better health outcomes and a more positive health care experience.
Elise Huntley, MA, CCLS, is a Certified Child Life Specialist who supports patients with sensory needs in the outpatient setting. As a member of the child life team at Dayton Children’s Hospital, Elise develops individualized coping plans for patients with developmental disabilities before hospital visits, using this information to create individualized adaptive sensory environments. She may be contacted at huntleye@childrensdayton.org.
Sean Antosh, MD, is a Board-Certified Pediatric Anesthesiologist with clinical interests in improving the perioperative experience and care of children with Autism Spectrum Disorders. He is the immediate past chair of the Society for Pediatric Anesthesia special interest group for Perioperative Care of Children with Special Developmental and/or Behavioral Health Needs. He may be contacted at antoshs@childrensdayton.org.
To learn more about the Dayton Children’s Hospital sensory program, please visit www.childrensdayton.org/the-hub/our-sensory-program-sets-gold-standard-patient-care.
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