By: Aislinn Willis
Navigating healthcare can present unique challenges for autistic individuals, from communication barriers and sensory overload to feeling unheard. Medical advocacy can help people express their needs, understand their options, and access more supportive healthcare.
Medical advocacy involves communicating your own health needs and preferences, or supporting someone else in doing so. For autistic individuals, navigating healthcare can sometimes be difficult due to sensory environments, communication differences, and unfamiliar appointment procedures.
These barriers can make it harder to communicate health concerns and may discourage some people from seeking care. Advocacy can help individuals participate more actively in decisions about their health. This might involve writing down symptoms, requesting accommodations, bringing a trusted support person, or asking for clarification when medical information is difficult to understand.
What Autistic Adults Say About Healthcare
A 2024 study by McLean and colleagues explored the healthcare experiences of autistic adults in the United States. Participants described challenges with communication, sensory environments, and navigating healthcare systems.
Online appointment booking and virtual appointments were among the accommodations discussed. Sensory factors, including sounds and smells, also influenced participants’ healthcare experiences.
Some participants described difficulties asking for clarification, while others reported having their health concerns dismissed or attributed to existing diagnoses.
Participants also highlighted the importance of more accessible communication methods and healthcare environments. Potential improvements included sensory-friendly spaces, greater flexibility in appointment procedures, and healthcare professionals who take the time to understand individual needs.
These experiences show that improving healthcare access involves more than encouraging people to speak up. Healthcare systems must also be prepared to listen and accommodate different needs.
Common Barriers to Healthcare
Autistic individuals may encounter a range of barriers when accessing healthcare, including:
- Communication barriers: Difficulty expressing symptoms or understanding medical information when communication methods aren’t accessible.
- Sensory overload: Bright lights, loud noises, strong smells, or crowded waiting rooms.
- Diagnostic overshadowing: When symptoms are mistakenly attributed to an existing diagnosis, potentially delaying appropriate care.
- Financial barriers: Treatment costs, insurance coverage limitations, or difficulties accessing necessary services.
- Anxiety and uncertainty: Unfamiliar procedures, unexpected changes, or previous negative healthcare experiences.
Ways to Advocate for Your Needs
While everyone’s needs and circumstances are different, the following strategies may help make healthcare appointments more manageable:
- Bring someone you trust: A family member, friend, or support person can help with communication, remembering information, or providing reassurance.
- Prepare notes beforehand: Write down symptoms, questions, concerns, or pain levels so important details aren’t forgotten.
- Explore appointment options: Ask whether online booking, phone consultations, or virtual appointments are available.
- Bring sensory or comfort items: Headphones, fidgets, or other familiar items may help make appointments more comfortable.
- Request accessible information: Ask for written instructions, appointment summaries, or online resources that you can review afterward.
- Communicate your preferences: Ask questions, request clarification, and express what you are or aren’t comfortable with during your care.
- Ask about accommodations: If needed, inquire about quieter waiting areas, additional processing time, or alternative ways to communicate with healthcare staff.
These strategies won’t remove every barrier, and not everyone will find them equally helpful. Some challenges require broader changes in how healthcare services are designed and delivered.
Making Healthcare More Accessible
Understanding the barriers autistic individuals face is an important step toward improving healthcare experiences. While personal strategies can help people prepare for appointments, healthcare professionals and organizations also have a responsibility to provide accessible services.
Medical advocacy is about more than speaking up during an appointment. It’s about ensuring that autistic individuals have the information, support, and accommodations they need to participate in their own care and feel heard.
Everyone deserves healthcare that respects their needs and preferences. Creating that experience requires understanding and cooperation from both patients and healthcare providers.
Disclaimer: This article is intended for educational purposes only and does not replace individualized medical advice.
Source:
McLean, K. J., Haas, M., Koenig, J., Horvath, M., Vigil, M., Werner, N. E., & Bishop, L. (2024). “I’m dealing with a health care system that doesn’t get it”: Barriers and facilitators to inclusive healthcare for autistic adults. Autism, 28(6), 1382–1393.
