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Key points
- Medical professionals face the unique challenge of effectively communicating with patients with autism.
- Often, medical students are not given hands-on experience in dealing with patients with autism.
- Effectively communicating with patients with autism includes asking the patient questions, speaking in checklists, and using concise language.
Medical professionals are often stymied when confronted with an autistic patient. A surprisingly high percentage of doctors are leery of treating people with autism, or they are ill-prepared to do so because there are so many potential challenges: intense sensory issues, communication barriers, language processing disorders.
My son Nat is an adult with fairly severe autism, language processing issues, and communication difficulties. For example, he has difficulty giving accurate responses because he has learned that just saying “yes” gets people off his back. This alone can be enormously dangerous during a medical examination.
So when Maura Sullivan, the Arc of Massachusetts Director of Government Affairs and one of the brains behind Operation Housecall, asked Nat and another young adult with autism to present to a class of Harvard Medical students, we jumped at the opportunity. Operation Housecall was developed in 1991 by the Arc of Massachusetts as a way of giving hands-on, direct experiences to train medical professionals in dealing with patients with developmental and intellectual disabilities.
Before our scheduled presentation, my husband Ned and I talked about the particular challenges we’ve encountered with doctors when Nat has needed medical attention. We developed a “tip sheet” to hand out to the students about what works for Nat. Others might be different.
The tips we came up with are listed and explained below:
This is a whole person you are dealing with.
Many times healthcare professionals will talk down to or patronize an autistic patient, not realizing there is a completely unique and complex person standing before them.
In Nat’s case, he is an adult. Saying “good boy” is inappropriate, if not downright insulting. He’s 32. Learn the patient’s name and the attending caregiver’s name, too, so that the visit is completely personalized to that family.
Speak in a normal or quiet tone of voice.
Many people do not know about the sensory issues that frequently are part of autism, and that may include sound sensitivity. Nat tunes out shouting or may feel anxious if someone is too loud. For some patients, speaking very quietly in a quiet room is the best way to get their attention, to signal that you are speaking to them and require an answer.
Allow processing time after asking a question.
Pose the question, and then wait for a response. It may take longer than you are accustomed to. For example, when Nat hears a question, sometimes he won’t respond. In that case, repeat the question and get the patient's attention by saying his or her name. If possible, restructure the question in case the patient doesn’t understand.
Include the patient in all conversations. Include the love object if possible.
Even if the individual appears not to understand what you’re talking about, assume they do. If you feel you need to ask the caregiver, let the individual know: “[Nat], I want to ask [your caregiver] and you about your health.” Sometimes the patient will bring in a love object of some sort, a blanket, a stuffed animal, a doll.
Program Director Maura Sullivan spoke of her son bringing in “Forkie,” a character from Disney's Toy Story 4, and the doctor examined Forkie along with her son. This technique works amazingly well.
Extra words might be polite but confusing.
Sometimes, to be polite, we say too much: “Do you want to go ahead and take off your shoes” can be just “Please take off your shoes.” Chit-chat may not be necessary or desirable. With Nat, small talk is downright confusing.
Professionals should consider using concise language and not make sweeping assumptions when discussing the task at hand.
Speak in checklists, or even write one out.
The autistic patient appreciates knowing the visit's agenda, the order of things, and when it will be over. Many autistic people love schedules, calendars, and bulleted lists. A short checklist during the appointment may help. Or, if possible, point to visuals so that show the patient precisely what is happening with each new check-up task:
- [Nat], first, I’m going to ask you and your caregiver some questions.
- Next, I’m going to weigh you and listen to your heart.
- After that, I will shine a light in your eyes and ears.
- …After your shot, you can go home.
Make sure you tell them what the last task will be and when they will go home. Nat needs to hear the beginning, middle, and end to feel comfortable with a given activity.
Also, repeat yourself. Tell the patient the steps in as similar a way as possible, each time. Take opportunities to briefly reiterate the order of things in the visit.
Rephrase and reframe questions to get accurate responses.
Ask questions framed as choices rather than “yes” or “no” questions. “Yes” might not be reliable. It is best to rephrase and reverse the order of response choices, and asking a second time can help ensure accuracy.
Be prepared to run more tests than usual because you may not get accurate responses. Check in with the caregiver to get a sense of the issues.
Explain why you are allowed to touch them.
Reassure them that you are a doctor, and they are safe. Remember to repeat that it will be over soon, and then they can move on to some preferred activity or go home.
There is no one way to interact with any patient successfully, and for autistic patients, this is particularly true. But there are tried-and-true strategies and techniques.
Remember to always ask the patient everything first, and include the caregiver if necessary, but keep the patient in the conversation. The general rule is to keep it simple, respectful, inclusive, and consistent.
