Communicating With Those Who Have Autism: A Reminder for Healthcare Professionals

Sharon Des Roches Rosa is a professional disability advocate who also has autism. She shares with the public an experience that happened early last year when she underwent an unexpected back surgery. 

Sharon Des Roches Rosa has autism and is a professional disability advocate. She decided to share with the public her patient experience, which she underwent during an unexpected back surgery. For years, she worked as a care aid, but due to her back problem, she was finding it increasingly difficult to work. Despite many treatments and medications, the pain grew significantly worse. Finally, in January, 2017, she was diagnosed with an extruded disk and was informed by doctors that she needed surgery. Since it was a routine procedure, she was told not to worry. However, the entire process turned into a nightmare for Sharon. During the surgery, she reacted violently to the anesthesia; the painkillers she was given failed to relieve her pain and instead caused an allergic reaction; twice, she was taken to the emergency room and had to be hospitalized for 72 hours; and for much of her recovery, she had a spiking fever and hallucinations. Sharon was extremely grateful to the doctors and nurses who operated on her, but she wanted them to understand how to give better treatment to the next patient who had to go through the same situation. There are many inaccurate assumptions about people with autism, especially online. First, many people are uncertain how to care for an autistic person who is sick. Online, there are many incorrect ideas about this. Such people are treated as though they are in the middle of a mental breakdown, and many assume they cannot make healthcare decisions for themselves.

Tips Shared by Sharon

Sharon decided to write down some tips that include best practices to help care for autistic people:

• Autistic people are extremely sensitive to stressful situations. With this problem, such individuals experience difficulties processing sensory input and communication. When autistic people are in severe pain or in the emergency room, they may not be able to communicate clearly. In such situations, a notebook and pen would be helpful for them to use, as would exhibiting calmness; stressful situations can escalate because of a bad attitude. Such people in these situations can forget their pronouns and thus may speak in the third person.

• To calm them down, autistic individuals need more intense communication. Since there’s a great deal of chaos in hospitals, it can be difficult to handle them, and they may even become aggressive. Such people are often controlled with physical constraints rather than intense communication. Explaining things properly to them, however, could make a huge difference.

• Family and caregivers can offer advice on how to interact with the patient. The people who make up an autistic individual’s support system can guide the doctor on the best way to communicate with the patient.

• An autistic person may not be able to control their aggression. They might become distressed and redirect their behavior towards others, or they may actively hurt themselves. So, relieving their distress is the best action you can take.

• During stressful times, autistic people may use unique methods of communication. Echolalia, stimming, and scripting are three alternative methods of communication for such individuals.

• Communicate with them directly and literally. Speak directly to the patient and do not ask them subjective questions. Speak slowly and clearly. Give them time to understand and respond. Avoid metaphors and ask them literal questions. Do not use dolls or models when physically examining them, and be sure to ask them direct questions about their pain. For autistic patients, the pain chart can be quite frustrating rather than helpful.

• Autistic individuals often have a low tolerance for things that are ridiculous or absurd. Sometimes they may think you’re being ridiculous and thus may become rude. So, when communicating with them, if you repeatedly ask them questions or demand information, make it clear to them why you are asking them for the information over and over.