People with autism spectrum disorder (ASD) face numerous healthcare disparities relative to their peers without ASD, as individuals with ASD often have reduced access to high-quality health care and experience lower satisfaction with patient-provider communication. Recent studies have begun to shed light on the unique obstetric challenges that people with ASD may experience during the perinatal period, although research on the intersectional experience of autism and pregnancy remains limited to date.
“This population of childbearing people are unique in that they face multiple challenges such as unmet healthcare needs, communication issues, and experience more barriers to receiving appropriate education,” said Patricia D. Suplee PhD, RNC-OB, FAAN, associate professor at Rutgers University School of Nursing in Camden, New Jersey.
Unique Challenges of Autism and Pregnancy
Along with the physical, emotional, and service-related challenges that are associated with pregnancy more generally, people with ASD often experience additional perinatal difficulties compared to neurotypical individuals, according to Megan Freeth, MSc, PhD, professor of neurodevelopmental psychology and director of research and innovation in the Department of Psychology at the University of Sheffield in the United Kingdom.
In a 2023 survey-based study published in the Journal of Autism and Developmental Disorders, Hampton et al compared the perinatal experiences of 384 individuals with ASD and 492 individuals without ASD. They found that those with ASD reported lower satisfaction with health care during perinatal medical encounters and were more likely to feel overwhelmed by the sensory aspects of childbirth.
Although providers should avoid making assumptions about a patient’s sensory experience, Prof Freeth explained that many people with ASD can experience intense challenges with the sensory aspects of pregnancy.7 For example, they may have an extremely heightened sense of smell and taste, sensitivity to touch, or sensitivity to the lights and sounds of clinical environments.
“For some, sensory experiences during birthing can result in feeling so overwhelmed that a disconnect from reality can be experienced,” she said. “Autistic people tend not to express emotional reactions in the same way as non-autistic people, and during birthing this can lead to clinical staff not realizing the severity of stress levels and can also exacerbate miscommunication, resulting in the autistic person not understanding their options and not having their preferences understood” by clinicians.
Studies have also indicated that communication challenges could make it harder for individuals with ASD to ask providers for help during labor and the postpartum period. “Some autistic individuals may be unsure how to answer open-ended questions or convey how they are feeling during labor,” said Jane Donovan, PhD, RNC-MNN, assistant clinical professor at Drexel University College of Nursing and Health Professions in Philadelphia, Pennsylvania. “Additionally, during childbirth, there are numerous encounters with healthcare professionals and staff who have varying levels of experience and knowledge working with neurodiverse individuals, and these social encounters with unfamiliar people can be stressful for an autistic individual.” She noted that the stress and pain of labor can exacerbate communication differences for autistic individuals.
Studies have also shown that individuals with ASD are more likely to experience postnatal depression and anxiety relative to their peers without ASD.
Improving Obstetric Care and Outcomes in ASD
In providing obstetric care to patients with ASD, Dr Donovan emphasized that providers need to recognize the vast diversity within this population. “It is essential to understand that autism is a spectrum condition with a great deal of variation among autistic individuals, and a provider’s view of autism should not be based on 1 patient,” she remarked.
Dr Suplee offered the following recommendations for providers developing a care plan for autism and pregnancy:
Assess each birthing person as an individual and do not assume that all patients with ASD will communicate or react the same way
Do not make assumptions about how to provide intrapartum or postpartum care based on perceived client social interactions
Learn how to interpret social cues and sensory overload and how to make appropriate accommodations to best meet the client’s needs10
Provide effective communication and tailor all education specifically to the client
Discuss support services that can be incorporated during each phase of the client’s birthing journey
Educate staff on what it means when a person experiences a heightened sensory perception of sound, light, or touch and what types of interventions can be utilized in these instances
Prof Freeth noted, “Consistent support from the same team members throughout pregnancy is particularly valued by autistic people.” In addition, “Having clear, precise information provided in written form to supplement information provided via discussions tends to be helpful as some autistic people take a little longer than non-autistic people to process information and appreciate being able to go over key information again in their own time,” she explained.
Other helpful adjustments may include options for individual or online classes or support groups — rather than large group-based formats — and allowing the presence of a patient advocate at appointments.
Clinicians may need to take extra time to listen to the special concerns of these patients, especially regarding sensory issues. Providers and hospitals may also consider making small adjustments to the sensory environment, such as not having music playing or screens on in a waiting room, having the option to wait for appointments in a non-crowded space, or using a lamp for lighting instead of overhead lights, Prof Freeth recommended.
Dr Donovan added that having sensory kits that contain items such as noise-canceling headphones, stress balls, sunglasses, and fidget toys available on obstetric units may help to ease sensory overload. “Implementing strategies to create a sensory-friendly environment in waiting rooms, examination areas, and on the labor and postpartum units can provide a more welcoming environment to neurodiverse individuals,” she stated.
Given the high rates of comorbid mental health disorders among individuals with ASD, Dr Donovan advised that mental health screenings should be included in the plan of care for autism and pregnancy.
Unmet Needs
Experts point to the need for ongoing provider education and research to further understand and improve obstetric care for individuals with ASD. Ideally, such efforts would include “autistic-led training and co-production of service development whereby autistic people are involved in designing maternity services,” Prof Freeth suggested. She noted the need for research focused on the development and evaluation of such services, along with studies that would elucidate the lived experiences of pregnancy, birthing, and the postpartum period among people with ASD.
Dr Donovan said she would like to see provider training programs focused on “interventions to facilitate communication and create sensory-friendly environments.”
“Policies and protocols should be developed and used as guides when caring for birthing people with ASD during the intrapartum and postpartum periods,” Dr Suplee recommended. She cited the need for research exploring strategies for teaching new mothers with ASD about parenting skills and recognizing infant cues, as well as qualitative studies to “build evidence on how best to care for this population during the antepartum, intrapartum, and postpartum periods that will lead to improved maternal health outcomes.”
Keypoint: This article originally appeared on Psychiatry Advisor
Comments