I think it’s fair to assume that a visit to the doctor’s office is not something that most people find enjoyable.
There can be a lot of stress involved; whether that be from thoughts of an ailment needing to be diagnosed, anticipation of results awaiting or perhaps knowing that the visit will result in a needle to the arm. I’m sure doctors are quite familiar with patients exhibiting traits of stress, but each person is going to react differently, and that includes autistic people.
Autistic people have different sensitivities, struggles, and needs than one other and everyone else. It is important to know, accept, and accommodate struggles that autistic people may work with in order to make their experience with you more comfortable. It will also help you to assess, diagnose, and treat your patients more effectively.
Here are some things that doctors should know and can do when treating autistic patients.
- The first thing a doctor should do, even before treating an autistic person, is to understand and unlearn ableism. Ableism is discrimination in favour of people who are able-bodied and/or neurotypical. Ableism tends to regard people with a disability as damaged or diminished and implies that they need fixing. Unlearning ableism is essential for treating autistic people with respect. Many of the points below describe specific ways to breakdown the elements of ableism. First, though, you can do a self-check. Ask yourself…
- Do I find myself making assumptions about disabled patients that I wouldn’t make about other patients? What causes me to make those assumptions, and are they always correct? Are they helpful?
- Is there a part of me that thinks of disabilities as a ‘bad’ thing? Do I see disability as something that should be changed or cured?
- Do I think or feel differently about disabled people, compared to able-bodied, neurotypical people? How could these thoughts and feelings affect my practice and impact my disabled patients?
- Does my practice accommodate the various needs of my disabled patients? Do I find it easy adjusting my usual practice to accommodate a patient when asked?
- Be sure to speak to autistic people directly when referencing them, especially if they are the patient. Observe yourself when speaking with an autistic person; do you speak directly to them, or do you speak about them to someone else, like a parent or caregiver? If you find you often speak to the caregiver, consider the assumptions you may have made about autism and the autistic person in front of you, and question if those assumptions are helpful and if they are fact-based. Being left out of the conversation and talked about as if you are not in the room can make anyone feel unheard and uncomfortable, especially if it is your doctor’s appointment. Speaking directly to autistic patients can show that you respect them and their bodily autonomy.
- Usually people refer to themselves using the same language they wish others to use. Keep this in mind. Someone may use terminology to describe themself and their autistic identity that you have not heard before. They may use language that you have heard is improper. For example, they might refer to themselves as “an autistic person” rather than “a person with autism.” A person’s identity be should always respected, and not corrected. Doctors are only with autistic patients some of the time, but autistic people are with themselves all of the time. which means it is likely that they have had a lot of time to think about their identity and how they wish others refer to them. Respecting how a person identifies provides a more welcoming and safe space, and builds trust between patient and doctor.. (If this Identity First and Person First Language example left you with some questions, I recommend looking more into disabled people’s opinions on the matter, and researching why Person First Language may not be preferred.)
- Sensory over- and under-reactivity are very common in autistic people. Many times, the doctor’s office is not the most sensory friendly place. Bright lights, people talking, moving, and loud crinkly paper are some things that autistic people may find overwhelming. If an environment is not autism-friendly, it is more likely that autistic people will need to use their focus and energy to try to regulate sensory systems. The unfriendly environment can make autistic people uncomfortable and agitated. Of course, some things in a sterile environment cannot be changed to become more sensory-friendly and sometimes this stress may be unavoidable. Sensory issues can be a reason why autistic people seem less vocal during appointments, or struggle to communicate at all in general. Accommodations and modifications can reduce the sensory impact, such as scheduling appointments for that person at a quiet time of the day. Being as sensory-friendly as possible can make communication and assessment of health needs easier. This may mean: allowing stimming, asking yes or no questions, having an alternative way of communicating that does not involve speech. For example, you can encourage your patient to use head shakes, or their own augmented communication tools, instead of asking them to respond verbally.
- It is respectful to always ask permission, or at the very least, give a warning, before touching a person’s body. Respecting an autistic person’s bodily autonomy is important, but it also can abate any defensive reactions or unpleasant emotions that result from spontaneous touching. To help you and your patient feel happy and safe it is best to communicate each step along the way. . Short clear explanations of first ‘this’, then ‘this’, and why you need to do ‘this’ may reduce anxiety.
- Due to sensory sensitivity, autistic people often feel pain differently. They may be hypersensitive or hyposensitive to pain. This varies from person to person. Knowing this can help you to better understand what is going on. For example, if someone is hyposensitive to pain, they may not be able to tell you “where it hurts” or even know that something is wrong. In those types of situations, a doctors may need to do more tests than usual to help with a diagnosis (that may mean going beyond the history and physical exam).
- Verbal communication should be direct, clear, and literal to avoid misinterpretation. Idioms and metaphors are sometimes not recognized or understood by autistic people. Communicate each step precisely, even if it seems unnecessary. When it comes to a person’s health, it is better to over-explain, than to leave them confused. If things are not clearly communicated, people may follow directions incorrectly. It could be wise to have the autistic patient repeat instructions back to you. This confirms clarity between the doctor and the patient.
- Sensory sensitivities affect interoception. Interoception is the sense of the internal state of the body, both conscious and unconscious. It is the brain’s representation of sensations from the body such as hunger, thirst, pain and internal temperature. It is particularly important to think about potential sensory triggers if the patient has poor interoception. Poor interoception may go hand-in-hand with a high pain threshold, but can also affect a person’s ability to be specific about what is causing pain and where pain is in the body. An autistic person’s brain and body can sometimes seem disconnected. Poor interoception can mean that important information the body tries to send is not being heard or registered. If an autistic person has poor interoception, they may be in a more serious situation than it seems because it may take a lot of pain before they even notice there is a problem. You may be required to find alternative ways to help them specify the location of the problem. With poor interoception, patients can miss the cues for hunger, fullness, or waste evacuation. This can frequently lead to digestive issues. Understanding an autistic person’s interoception differences will help you find the right diagnosis.
- Do not assume that the autistic person has heard, followed, understood and will remember all that was said in the appointment. It is helpful to write down information and instructions for your patient. It is a good way to help ensure that nothing is forgotten after the appointment. Some common traits of autism that may need accommodation are; social communication difficulties, auditory processing issues, and/or poor short term memory. If someone is facing many sensory challenges their memory may be affected. Likewise, if someone is experiencing stress due to masking or any other mental exhaustion, they may have trouble making and recalling memories in the short term. (If you’re not familiar with the idea of autistic masking, you may want to check out some self-advocate created resources on the topic, like this video: [A Conversation About Masking with Kieran Rose]). Having instructions in a format useful for the patient to take home can minimize stress greatly and help ensure proper treatment is followed.
- Autistic people often process non-vocal communication differently. Be ready to shift your non-verbal communication style when working with an autistic patient. They may not give you eye contact but rather, look elsewhere in the room. This is not being disrespectful but simply may be a part of their autistic traits, and they likely are listening to you. Your patient may not be able to read your facial cues, . and they may not communicate with their face. Autistic people can have facial expressions that may seem “incorrect” to you for given situations. They may smile when they are sad, furrow their eyebrows when they are excited, or laugh when they are in pain. Interpreting non-vocal communication from an autistic person can be very misleading. It can lead to incorrect analysis. It is not safe to assume that neurotypical and allistic (allistic refers to someone who is not autistic) criteria will work for an autistic person. Be aware that their facial expressions may not match with the reality of the situation. Being person-centered in your approach with your will help you to reach a diagnosis and treatment plan.
Remember that each autistic person is unique. There will be various sensory difficulties, tolerances for pain and communication styles. Overall, it is very helpful to understand that each autistic patient is an individual. Treat them as such and keep their own personal needs in mind. These tips are a good start to help make sure autistic people are safe, comfortable and well cared for during a visit to the doctor.