My Autistic Sister Deserves a Pap Smear Too: Closing the Reproductive Care Gap for Neurodiverse Patients

• Autism Spectrum Disorders
• Communication Aids for Disabled
• Family Medicine
• Health Services Accessibility
• Papapinicolaou Test
• Primary Health Care
• Reproductive Health Services
• Women’s Health

“Try to relax your body… take a deep breath in” my obstetrician-gynecologist (Ob-Gyn) said as I fought the urge to flinch from the cold metal speculum during my recent Pap smear. As a third-year medical student, I can recite by heart the importance of Pap smears in reducing cervical-cancer deaths and that screening should begin at age 21. But, at home sits my 24-year-old sister with profound autism spectrum disorder (ASD) – her first Pap smear still unimaginable. With sensory challenges and no verbal communication, I wonder how she could ever “relax her body” for a pelvic exam in the way that the doctor asked me to? The bright lights, cold instruments, unfamiliar hands—what I find barely tolerable, she may find impossible.

How, then, are women like my sister receiving the routine gynecologic care that I am taught significantly saves lives? This editorial explores how existing reproductive healthcare systems fail autistic women, drawing on a targeted, non-systematic review of recent peer-reviewed studies, national guidelines, and key publications to examine barriers to equitable care.

The truth is that many autistic women are not receiving the reproductive healthcare they deserve. A 2024 study found that only 38% of autistic adult women had ever received a Pap smear and 47% received at least one dose of the human papillomavirus (HPV) vaccine.¹ Language difficulties and intellectual disability further resulted in patients not receiving a speculum exam – challenges my sister personally experiences. Adolescents with autism experience similar gaps – they are more likely to have menstrual disorders and polycystic ovary syndrome (PCOS), yet less likely to go to the doctor or use hormonal contraception.² Too often, the reproductive health needs of neurodiverse women are overlooked or unmet.

Clinician training gaps compound these disparities. A 2018 study found only 17.2% of Ob-Gyns received any training on caring for women with disabilities, and few felt “very comfortable” treating patients with intellectual and developmental disabilities.³ Nearly half of Ob-Gyns communicate with the patient’s guardian “most of the time” or “always,” and 38% defer health-care decisions to the guardian – practices that significantly erode informed consent and reproductive autonomy. Furthermore, clinicians were significantly more likely to recommend sterilization for patients with intellectual and developmental disabilities compared to those with physical or no disabilities.³ While these findings focused on Ob-Gyns, similar training and comfort gaps exist across primary care: 77% of primary care (internal medicine and family medicine) physicians rate their ability to care for an autistic adult as poor or fair.⁴ Lack of provider preparation is not an isolated issue, but reflects a widespread gap that warrants urgent reform for patients with neurodevelopmental conditions.

As a medical student rotating through primary care clinics, I have observed how family physicians and pediatricians serve as the primary, and often the only, healthcare providers for autistic patients. These clinicians primarily serve as the point-of-care for reproductive health, administering vaccines (e.g., HPV), addressing puberty and menstrual concerns, initiating cervical cancer screening, and managing transitions to adult care. Yet, without neurodiversity-affirming training, these critical opportunities for health prevention and promotion are missed.

There are signs of progress. The American College of Obstetricians and Gynecologists (ACOG)’s Committee Statement No. 18 (Access to Obstetric and Gynecologic Care for Patients With Disabilities, May 2025) is a welcome move, but it stops short of offering guidelines or requiring neurodiversity-affirming training for physicians treating autistic adults.⁵ In a 2025 NEJM Perspective, Schiff et al. highlight the importance of creating visual checklists, social narratives, and step-by-step guides to guide gynecologic exams and to reduce anxiety, showcasing the AASPIRE Healthcare toolkit for all providers.^6,7 For example, my sister uses an Alternative and Augmentative Communication (AAC) device (iPad) to express her needs. Clinicians across specialties should be trained and empowered to incorporate such tools into care when appropriate.⁸ AAC tools, such as speech-generating devices, have been shown to improve communication between patients and providers, even in high-acuity settings such as the ICU.⁹ Beyond ACOG, there is an urgent need for more professional organizations to develop actionable policies that promote neurodiversity-affirming guidelines and care.

For patients with profound autism who cannot tolerate an invasive exam, primary care providers must be equipped to consider trauma-informed alternatives. These may include performing a pelvic exam under anesthesia, conscious sedation, or the use of self-collected vaginal swabs when appropriate.^10,11 Incorporating plastic models, social narratives, or step-by-step visual aids can also help patients prepare for and understand the exam process.

The use of sedation and invasive procedures must be carefully weighed against their potential risks. Reproductive care should not follow a one-size-fits all model, but should be individualized and grounded in clinical judgment and shared decision-making. Too often, autistic women are excluded from preventive care based on inaccurate assumptions about sexual activity. In fact, nearly 9 in 10 autistic women experience sexual victimization in their lifetime, with estimates of child sexual molestation ranging from 10–16% and adult sexual victimization from 62–70%.¹² Women with co-occurring intellectual disabilities are at even greater risk.¹³ For many of these women, a gynecologic exam represents one of the few clinical opportunities to identify signs of trauma or detect concerning pathology.

Therefore, the goal is not to subject all patients with neurodevelopmental conditions to unnecessary procedures, but to ensure they are not excluded from essential and life-saving reproductive care. Adopting a neurodiversity-affirming framework prioritizes autonomy, safety, and shared decision-making tailoring care to the patient’s unique needs.

With the Center of Disease Control and Prevention (CDC) estimating that 1 in 31 children are diagnosed with ASD and diagnoses among girls rising by 305% over the past decade, it is imperative that we close these reproductive-health gaps.^12,13 As these patients transition into adult care, it is imperative that incoming and current primary care physicians feel equipped to care for this undertreated population. Neurodiverse patients deserve equitable reproductive healthcare.

We, as a medical profession, must lead this change. Professional organizations, including the American Board of Family Physicians (ABFP), American Academy of Family Physicians (AAFP), American Board of Internal Medicine (ABIM), American Academy of Pediatrics (AAP), and American College of Obstetricians and Gynecologists (ACOG) have the opportunity and responsibility to develop comprehensive clinical practice guidelines outlining best practices in neurodiversity-affirming reproductive healthcare. Such guidelines should clearly address sensory accommodations, communication adaptations, supported decision-making, and emphasize ethical respect for reproductive autonomy. It is also essential that these efforts be shaped in partnership with autistic women and advocates, such as the Autistic Women & Nonbinary Network, to ensure clinical resources and training tools reflect the voices and lived experiences of those most impacted.¹⁴

Integrating neurodiversity-affirming care into medical training faces significant challenges. Medical school and residency curricula are already packed, and many programs lack faculty with expertise in caring for neurodiverse patients to teach trainees in a meaningful way. Developing resources and comprehensive curricula tools, such as case modules, standardized patient simulations, and assessments require time, funding, and faculty support. To overcome these barriers, it is important that medical organizations, advocacy groups, and professional accrediting bodies work together to prioritize sustainable, evidence-based training that equips clinicians to care for neurodiverse patients with skill and compassion.

To move from awareness to action, we must address both current training gaps and opportunities to support clinicians. This effort must begin in undergraduate medical education, where foundational knowledge about neurodevelopmental conditions and communication strategies should be introduced early and reinforced longitudinally. Residency education must integrate training in caring for neurodiverse populations across all primary care specialties including family medicine, pediatrics, internal medicine, and medicine-pediatrics. Mandating training through the Accreditation Council for Graduate Medical Education (ACGME) could advance the likelihood that every new physician is prepared to deliver compassionate, inclusive care. This should include instruction on sensory and environmental accommodations for sensory sensitivities, supported consent and decision-making processes, communication adaptations, and protocols for examination under anesthesia. For practicing physicians, continuing medical education (CME) programs can play a critical role. CME modules focused on autism-affirming care, particularly in gynecology, primary care, and reproductive health, can be developed and incentivized to ensure that established physicians can better support these patients. Every physician should be equipped not just with the skills to perform a pelvic exam, but with the compassion and inclusion needed to ensure all patients, including autistic women, feel safe, seen, and respected in their care.

These action steps will ensure that trainees and practicing physicians can adapt to patients’ sensory and communication needs while upholding reproductive autonomy. My sister deserves the same life-saving reproductive care I am being taught to provide. As the foundation of health care delivery, primary care is uniquely positioned to ensure that no patient, regardless of neurodevelopmental ability, is left behind.

• Received for publication June 26, 2025.
• Accepted for publication September 2, 2025.