As more individuals are diagnosed with/identify as autistic, societal awareness continues to grow. With the neurodiversity perspective, which views neurological differences as natural variations rather than deficits, also gaining recognition (Pellicano & den Houting, 2022), the U.S. healthcare system must evolve to embody an inclusive and accommodating environment for all individuals. Healthcare sensitivity is especially important when working with the autistic1 community. Whether it be a routine checkup or an emergency health situation, accessing medical care can be a scary, overwhelming experience for autistic people given the unique challenges relevant to autism, such as sensory overload, differences in communication style and processing, or lack of provider understanding or flexibility (Autistic Self Advocacy Network, 2022; Kinnear et al., 2015; Nicolaidis et al., 2015).
Furthermore, in medical settings, autistic patients may face stigma stemming from a lack of competent provider training, implicit biases, or inaccessible environments (e.g., clinics with fluorescent lighting, crowded waiting rooms, and long wait times), all of which can lead to feelings of overwhelm, overstimulation, or dismissal. Additional forms of stigma may arise from family cultural views, limited access to appropriate and affirming providers, and internalization of stigma (Kinnear et al., 2016; Malik-Soni et al., 2022; Nicolaidis et al., 2015). Recognizing that “invisible barriers” of stigma exist is crucial in implementing change and creating a medical setting where all people feel that their needs are heard and respected.
What is Stigma?
Stigma is defined as the negative attitudes and beliefs that lead people to fear, reject, avoid, or discriminate against others based on a specific characteristic (American Psychological Association, 2018). Stigma can result in social devaluation, creating inequality and discrimination (Link & Phelan, 2001). For the autistic population, stigma can lead to healthcare barriers, specifically with accessibility or lack of quality care. Autistic individuals may face both instances of internalized and external stigma in health care settings. External stigma, also known as enacted stigma (e.g., overt rejection or discrimination by others), for example, can look like negative attitudes and behaviors from healthcare professionals towards autistic patients (Gray, 2002). Internalized stigma (i.e., shame and expectation of discrimination that prevents people from talking about their experiences) may lead autistic individuals to avoid seeking care altogether (Gray, 2002). Stigma may stem from the autistic individual’s past negative experiences within medical settings, such as memories of feeling like their autism diagnosis is “bad” or feeling burdensome or less deserving of care (Huang et al., 2023; Turnock et al., 2022).
Stigma Within Healthcare Settings
Within healthcare settings, stigma from medical providers may cause autistic individuals to feel dismissed or disrespected, an unacceptable experience no patient should face in seeking care (Stanford, 2016). One major barrier contributing to stigma is lack of training among healthcare workers for competently working alongside autistic people (Malik-Soni et al., 2022). For instance, medical students in the U.S. report receiving insufficient education on supporting the needs of autistic patients (Austriaco et al., 2019). Providers in the United Kingdom similarly also report low confidence levels concerning their ability to support and refer autistic patients to needed specialists (Unigwe et al., 2017). Research on autism training in medical and health education is emerging, with much of the literature focused on children or early screening rather than ongoing care (Doherty et al., 2020; Nicolaidis et al., 2015).
Providers, for instance, may misinterpret key aspects of communication when supporting autistic people. For example, some providers may be aware of the unique expressive or receptive language preferences of an autistic person or that behaviors (such as avoiding eye contact) and cognitive styles impacting communication (such as benefiting from extra wait time) are not signs of defiance or disengagement but rather characteristics of a person’s neurodevelopmental profile (Nicolaidis et al., 2015). Over time, repeated experiences of misunderstandings or judgement in healthcare can lead to frustration among autistic individuals, further increasing the desire to suppress or hide aspects of their identity to avoid mistreatment. This pressure to “mask” or “pass” as neurotypical is often rooted in ableist norms and contributes to poor mental health and feelings of inauthenticity (Botha & Frost, 2020). Misunderstandings like this have the potential to lead to miscommunication, misdiagnosis, and even trauma (Autistic Self Advocacy Network, 2022; Pearson & Rose, 2021).
Another barrier within healthcare settings is the limited understanding and accommodation of sensory differences. Elements such as the loudness of waiting rooms, unpredictable wait times, and environmental factors like lighting can contribute to heightened distress for autistic individuals (Mason et al., 2019). In some situations, sensory inaccessibility may even cause physical pain, escalate distress, and result in traumatic encounters (Autistic Self Advocacy Network, 2022).
Cultural and Structural Barriers
Autistic individuals also face challenges regarding cultural stigma and structural barriers. Cultures inherently have differing opinions on how they perceive disability and mental health, influencing how families talk about autism and raise concerns with providers. These nuanced perspectives, inherent to each culture, make it relevant for clinicians who work with autistic people, from identification and diagnosis to potential intervention, to understand the criticality of advocacy and internalization (i.e., how individuals personally experience cultural attitudes toward autism). For example, stigma and language barriers in Asian American communities often delay autism evaluations. Chinese and Korean American parents may report early signs, but providers sometimes fail to intervene (Kim & Park, 2022). Language is also a major barrier to families and parents of autistic individuals accessing care, only made more complicated by the limited number of non-English autism-related educational and resource materials (Singh & Buyak, 2018).
Structural challenges also exist for autistic individuals, including inadequate insurance coverage for autism-related services, a shortage of trained professionals, transportation challenges, and long waitlists (Malik-Soni et al., 2022). Even when services are technically available, services often are inconsistent across systems and are rarely adapted to meet the individualized needs of autistic patients, instead defaulting to a one-size-fits-all approach, overlooking autistic needs. Structural barriers, like the ones mentioned here, may lead to inconsistent care, mistreatment, and avoidance of seeking care as a whole.
Internalized Stigma and Why Change is Needed
Stigma may become internalized when an autistic individual believes and adopts negative societal views about their autism, leading to reduced self-esteem and self-efficacy (Huang et al., 2023). Repeated exposure to ableist perspectives that pathologize autistic traits, such as differences in communication, sensory processing, or social behavior, can pressure individuals to “mask” and hide their authentic selves in an effort to conform. Internalized stigma contributes to poor mental and physical health outcomes (Botha & Frost, 2020), a critical issue within public health and within medicine more generally.
As society increasingly embraces the neurodiversity paradigm, a framework that views neurological differences like autism as natural variations of human diversity rather than deficits, there is growing recognition that being autistic is a part of a person’s identity (Pellicano & den Houting, 2022). This paradigm shift, driven largely by autistic self-advocates, challenges the traditional medical model that pathologizes autism and instead promotes acceptance and the value of diverse ways of thinking. As society moves toward a neurodiversity paradigm, healthcare settings must align with this perspective by creating environments that validate neurodivergent experiences and support neurodiversity (Pellicano & den Houting, 2022).
Strategies for Inclusion
To create a more inclusive healthcare system, providers must be intentional, respectful, open, and competent when working with autistic patients. Whether it be in an emergency such as the hospital or even a routine dental checkup, autistic individuals deserve to feel supported, safe and heard in order to engage most effectively in their healthcare. Below are some specific strategies for healthcare professionals to consider in their care of autistic patients.
In Emergency Situations:
- Speak calmly and clearly using short, direct instructions.
- Minimize sensory stressors where possible (e.g., reduce overhead lighting, limit loud noises, and offer items like sunglasses/noise-canceling headphones).
- Allow extra time for processing and responding.
- Respect and support alternative communication methods (e.g., augmentative and alternative communication [AAC], such as devices, picture boards, or gestures).
- Respect the autistic individual’s autonomy if they say “no.”
- Understand that behaviors such as avoiding eye contact, covering ears, or withdrawing may indicate sensory distress rather than defiance.
- Provide clear information about what will happen next to reduce uncertainty.
Routine Check-Ins:
- Offer appointments during times when the environment is less noisy and crowded, such as early mornings, weekends, or designated quiet hours, to reduce sensory overload and minimize wait times (for example, staying open one late evening per month).
- Provide visual schedules or posters outlining the steps of the medical visit to help patients anticipate what will happen.
- Design flexible office spaces with features such as light dimmers, noise machines, quiet zones, and sensory tools like fidget toys.
- Inquire about the patient’s preferred method of communication and sensory sensitivities prior to the visit. This may involve updating intake questionnaires and office check-in protocols.
- Welcome patients who bring support persons or advocates, ensuring extra seating is available in exam rooms and waiting areas.
Lyndsey Gillespie, MA, is a PsyD candidate in Clinical Psychology with a Health Emphasis at Touro University in Manhattan, NY.
Footnotes
- This article uses identity-first language (e.g., “autistic individuals”) in alignment with preferences reported by ASAN (2021) and the 2022 Autistic Not Weird survey (Bonnello, 2022).
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