AuDHD: Navigating the Labyrinth
“One of the most significant barriers autistic individuals face in healthcare settings is the lack of understanding from healthcare providers. Many healthcare professionals receive little to no training in autism-specific care, which can result in misinterpretations of autistic behaviors”
Julia Keen
Senior Contributor - Motherhood, Queer Life, and Neurodivergence
The healthcare system is challenging and complex for any one person, but for those of us on the autism spectrum, it can be particularly difficult. Autism is characterized by differences in communication, sensory processing, and social interaction, which can make accessing proper healthcare far more complex. I want to explore these various struggles while offering practical advice for seeking medical care, including communication barriers, sensory overload, misunderstandings by healthcare providers, and the lack of autism-informed care.
(un)Natural Communication
For many autistic people communication is the major obstacle in healthcare settings. You may have difficulty expressing your needs, symptoms, or pain levels clearly, especially in the fast-paced and often chaotic environment of hospitals or, conversely, the sterile and bizarre environment of clinics and offices. Some individuals are nonverbal, use alternative forms of communication, and many struggle with understanding medical jargon.
The miscommunications between the patient and provider can result in misdiagnosis and subsequent inadequate treatment. This can manifest by being diagnosed with mental illnesses and/or conditions you do not have, behavior surrounding social cues being interpreted as rude or disinterested, and frustration by both parties. Many adults on the spectrum have reported difficulties getting a diagnosis in the first place- let alone going forward and being taken seriously as a patient. This misinterpretation by healthcare professionals greatly complicates the process of getting the care you need.
Effective communication between you and your doctor is crucial for receiving proper healthcare. While communication challenges may vary from person to person, there are several practical strategies that can help improve these interactions. Prepare in Advance by writing a detailed list of concerns and topics (symptoms, questions, medications) to ensure that all important points are covered, especially if it’s difficult to remember or express them in the moment. Feel free to write this list in your phone. Additionally bring a health summary (written or typed) of your medical history, your family’s medical history, any current medications, and allergies. Include as much information that may be relevant to your specific needs. Practice beforehand-this can look like getting the help of a trusted friend and rehearsing the interaction. Try recording yourself asking questions and giving statements, or writing a note that says “I struggle with ______. Are there any accessibility options for me?” Keep in mind you should always advocate for yourself- you can always ask the providers to elaborate, describe, or repeat any information about a procedure they will be giving you and you always have the right to say no. If you have a trusted support person in your life you can bring them with you to help communicate, clarify, and advocate for you as well.
Am I Just Too Sensitive?
Healthcare environments are notoriously overstimulating with bright lights, loud noises, crowded waiting rooms, and unfamiliar smells. These can all contribute to sensory overload for an autistic person as we often have heightened sensory sensitivities, meaning that the sounds of medical equipment, the fluorescent lighting, textures and temperatures of certain materials can be overwhelming, frightening, or even painful.
The act of concentrating, communicating and cooperating with others while experiencing sensory overload can be extremely inhibiting as it can cause you to shut down, become non-responsive, and/or act out. These overwhelming feelings further complicate your ability to receive proper care. Healthcare environments and facilities are rarely designed with sensory awareness, which leads to discomfort, anxiety, and many times the avoidance of medical appointments altogether.
In order to minimize the discomfort of these conditions I have compiled some ideas that may help you. Requesting accommodation is welcome at most facilities so do not hesitate to ask for written instructions, request longer appointment times, and communicate via email or telehealth follow-up (a follow up is a short appointment in which you check back in with the doctor about the concern you initially went in for). Additionally bringing sensory aids (like headphones, fidget tools, a phone game, etc) can be a great help or distraction for these environments. Lastly, you know yourself best- so do not be afraid to correct your provider when they are wrong and repeat yourself when you’re not being heard.
What’s Not Clicking?
One of the most significant barriers autistic individuals face in healthcare settings is the lack of understanding from healthcare providers. Many healthcare professionals receive little to no training in autism-specific care, which can result in misinterpretations of autistic behaviors, or a failure to accommodate the needs of these patients. Some of us may be viewed as uncooperative, difficult or challenging when in reality, we are struggling to cope with the environment and communicate our needs effectively.
This lack of autism-informed care can lead to inadequate treatment plans, incorrect diagnoses, or even discriminatory practices. For example, if healthcare provider fails to recognize that an autistic patient’s difficulty with eye contact is a commentary of ASD. They may wrongly assume that the patient is disinterested or not engaged in their own care.
Explain your communication preferences at the beginning of your appointment by letting the doctor know your needs (“please ask more specific questions”). You can always ask for clarification by requesting they explain it in simpler, or more straightforward, language. Using basic “Yes” or “No” Responses can lead the health professional to adjust their questions to be more direct. Alternatively you can bring visual aides to help your doctor understand your specific needs like diagrams or photos.
Fear Will Eat Your Chance at Healthy Living
Due to past negative experiences, many individuals with autism may develop a fear of medical settings. If an autistic person has previously encountered sensory overload, communication difficulties, or dismissive healthcare providers, they may associate healthcare visits with stress and discomfort. This fear can lead to avoidance of medical care, resulting in delayed diagnosis, untreated conditions, or deteriorating health.
In addition, routine medical procedures, such as blood draws, vaccinations, or physical exams may be particularly challenging for someone on the spectrum. The unfamiliarity of medical procedures, combined with sensory sensitivities can make even routine healthcare experiences highly stressful.
Luckily, facing fear is about as universal as breathing air. You can start small when desensitizing by gradual exposure by making short, non-stressful visits to the doctor’s office without having any procedures done. This allows you to get used to the environment without the added pressure of medical intervention. Creating a predictable routine, practicing relaxation techniques, and preparing mentally and emotionally can all be incredibly helpful. Lastly- keeping detailed records for future visits will also come in handy for the next times you will visit the doctor’s office.
You Just Don’t Know Me
The over-arching issue that contributes to the struggles autistic individuals face in healthcare is the widespread lack of autism informed care. Many healthcare professionals are not equipped with the knowledge or skills to appropriately support autistic patients. This lack of specialized training can result in a healthcare system that does not account for the unique needs of autistic individuals, leading to barriers in access, communication, and effective treatment.
Autism-informed care would involve healthcare providers receiving training on the diverse way that autism can manifest, how to communicate effectively with autistic patients, and how to create environments that reduce sensory triggers. Without these measures, autistic individuals will continue to face struggles and accessing the care they need.
I have found that being direct about my experience can help give providers their needed context to give me informed care. “I have trouble concentrating with these bright lights, can we turn them down or off?” “I tend to be very direct and avoid eye contact, please don’t think I’m being rude” “I have a lot of experience/research with ______ which leads me to believe that the issue is/is not _____.”
Conquering the Unknown
Some of us are undiagnosed and this has a certain detrimental impact that goes unrecognized. The internal questioning can be relentless, and even depressing at times. But thankfully the solutions for these issues are quite the same as above. Building and leveraging support by connecting with local and online communities, support groups, and advocacy organizations. Self advocacy and empowerment by both understanding and asserting your rights as an individual and developing skills for effective communication with providers. Continuous advocacy and systemic change by engaging in local and national advocacy efforts (being a kind stranger goes a long way) and becoming and staying informed about policy changes and new resources.
For individuals (knowingly, or not!) on the autism spectrum, accessing proper healthcare can be an overwhelming and frustrating experience. From communication barriers to sensory overload and lack of autism-informed care, the healthcare system often does not accommodate the specific needs of autistic patients. To improve healthcare access and outcomes for people with autism there must be greater awareness and understanding of the challenges they face, along with efforts to create more inclusive, sensory-friendly, and patient censored care environments. Only through these changes can the healthcare system truly meet the needs of individuals with autism.