Date of Presentation
5-4-2023 12:00 AM
College
School of Osteopathic Medicine
Poster Abstract
Autism Spectrum Disorder (ASD) is a developmental disorder that is diagnosed in early childhood, typically in people who are assigned male at birth. However, this diagnosis and the sensory and behavioral divergence that comes with ASD stay with people throughout their lives. Based on the DSM-V diagnostic criteria and the history of how Autism and Autism Spectrum Disorders were first identified, many people who do not identify as male and/or present atypically do not receive a formal diagnosis until later in life or self-diagnose. This in turn has led to a lack of research in both populations that do not identify as cisgender male and in adult healthcare for people with ASD. This preliminary scoping review focuses on the perinatal (pregnancy, birth, and postnatal) experiences of people with Autism Spectrum Disorders. Currently there are very limited quantitative and qualitative studies exploring this topic and there are significant gaps in provider knowledge of atypical and/or adult presentations of ASD. In this review, I looked at papers published in English and available through the PubMed database that focused on one of the following three themes: perinatal experiences of the ASD population, healthcare experiences in general of the ASD population, and perinatal experiences of people with disabilities in general. After performing a scoping review of 6 papers, most people with ASD had increased sensitivity to sensory and physical stimuli during pregnancy, felt unprepared to address their body’s signals during birth, and unprepared to cope with the physical postnatal symptoms and sensory sensitivities associated with breastfeeding. Surprising to note was that many parents with ASD felt that their increased sensory sensitivities strengthened their response to the baby’s cues. All these sensory/physical experiences went unrecognized for the most part by physicians as the patients with ASD felt pressure to act in a socially normative way and many did not disclose their diagnosis to the physician whether due to a lack of formal diagnosis and/or due to fear of a negative impact on their healthcare interactions. This lack of disclosure and masking of behaviors led to patient needs being underestimated by the healthcare team and the development of multiple communication barriers such as lack of adjustment to patient needs whether it be via providing an advocate or different methods of providing information. These barriers highlighted the gaps in physician knowledge on how ASD is a spectrum and has many different manifestations and their ignorance in how to properly address and adapt to patient symptoms of meltdown/shutdown/sensory overload. Participants in all the papers reviewed emphasized that continuity of care and physician willingness to adjust to patient needs contributed to improved health outcomes. Recommendations made for medical training and physicians included increased training on ASD, diversity in how information is provided, and adjusting to individual patient needs. However, current research is very limited and most had multinational or populations outside of the USA in their studies. Future studies must focus on elucidating barriers specific to the USA and gauging physician knowledge of ASD and their perceptions of that population.
Keywords
Autism Spectrum Disorder, Perinatal Care, Neurodevelopmental Disorders, Adult
Disciplines
Behavioral Neurobiology | Communication Sciences and Disorders | Development Studies | Maternal and Child Health | Medical Humanities | Medicine and Health Sciences | Patient Safety | Women's Health
Document Type
Poster
Included in
Behavioral Neurobiology Commons, Communication Sciences and Disorders Commons, Development Studies Commons, Maternal and Child Health Commons, Medical Humanities Commons, Patient Safety Commons, Women's Health Commons
Perinatal Experiences of People with Autism Spectrum Disorders: A Preliminary Scoping Review
Autism Spectrum Disorder (ASD) is a developmental disorder that is diagnosed in early childhood, typically in people who are assigned male at birth. However, this diagnosis and the sensory and behavioral divergence that comes with ASD stay with people throughout their lives. Based on the DSM-V diagnostic criteria and the history of how Autism and Autism Spectrum Disorders were first identified, many people who do not identify as male and/or present atypically do not receive a formal diagnosis until later in life or self-diagnose. This in turn has led to a lack of research in both populations that do not identify as cisgender male and in adult healthcare for people with ASD. This preliminary scoping review focuses on the perinatal (pregnancy, birth, and postnatal) experiences of people with Autism Spectrum Disorders. Currently there are very limited quantitative and qualitative studies exploring this topic and there are significant gaps in provider knowledge of atypical and/or adult presentations of ASD. In this review, I looked at papers published in English and available through the PubMed database that focused on one of the following three themes: perinatal experiences of the ASD population, healthcare experiences in general of the ASD population, and perinatal experiences of people with disabilities in general. After performing a scoping review of 6 papers, most people with ASD had increased sensitivity to sensory and physical stimuli during pregnancy, felt unprepared to address their body’s signals during birth, and unprepared to cope with the physical postnatal symptoms and sensory sensitivities associated with breastfeeding. Surprising to note was that many parents with ASD felt that their increased sensory sensitivities strengthened their response to the baby’s cues. All these sensory/physical experiences went unrecognized for the most part by physicians as the patients with ASD felt pressure to act in a socially normative way and many did not disclose their diagnosis to the physician whether due to a lack of formal diagnosis and/or due to fear of a negative impact on their healthcare interactions. This lack of disclosure and masking of behaviors led to patient needs being underestimated by the healthcare team and the development of multiple communication barriers such as lack of adjustment to patient needs whether it be via providing an advocate or different methods of providing information. These barriers highlighted the gaps in physician knowledge on how ASD is a spectrum and has many different manifestations and their ignorance in how to properly address and adapt to patient symptoms of meltdown/shutdown/sensory overload. Participants in all the papers reviewed emphasized that continuity of care and physician willingness to adjust to patient needs contributed to improved health outcomes. Recommendations made for medical training and physicians included increased training on ASD, diversity in how information is provided, and adjusting to individual patient needs. However, current research is very limited and most had multinational or populations outside of the USA in their studies. Future studies must focus on elucidating barriers specific to the USA and gauging physician knowledge of ASD and their perceptions of that population.