Verified by 
Key points
- Dental care of autistic adults is sorely lacking in many areas, so dentists must learn best practices from autistic adults or their caregivers.
- Dental care professionals should treat each autistic patient with respect, dignity, and an open mind.
- Autistic dental issues range from communication to sensory to logistical and financial challenges.
When our dentist told us that my autistic son Nat, 32, would need periodontal work—in his case, gum grafts—I flew into a panic. The procedure sounded complicated, difficult, and painful.
“We usually use skin harvested from the palate for the procedure,” the administrator told me. And for Nat, it would most definitely be worse because he cannot readily express thoughts or feelings, so no one would know if he were in pain during or afterward. I cannot bear that possibility, so we went for a second opinion at a teaching university dental program.
Two long appointments later, after nearly three hours—during which Nat sat, completely calm and accommodating—the dental school periodontist informed us that Nat would indeed need gum grafts. As terrible as I felt about that, I was encouraged by what I had already experienced at the clinic—the numerous ways in which the students and their professors had accommodated Nat—and we, his parents.
From the beginning, the staff greeted Nat warmly and respectfully. The student dentist addressed Nat directly, and included us with her eyes. My husband and I told her that we would work together with Nat to answer questions about him, as well as to help shape her interactions with him. For example, at a previous appointment we could tell that he was having trouble understanding the directions “bite down,” and my husband Ned gave them a few helpful suggestions of terms to use that were more familiar to Nat, like “close your mouth” or simply “bite,” because it seemed like Nat could not link together the concepts of “bite” with “down.”
Based on written conversations I've had with autistics and autism caregivers, I have come up with a small list of tips for dental professionals:
Take Medicaid
Autism dental professionals must understand the range of potential issues: communication, behavioral, sensory, logistical, and financial. Many autistic adults are on Medicaid.
One Florida autism parent, Kelly S, wrote: “I have a 19-year-old daughter with autism—nonverbal with pretty significant behaviors. For about ten years now she has had to be sedated for all dental work. Each time she was sedated it cost us over 2000 dollars out-of-pocket. The closest Medicaid dentist was over an hour away and booked out for many months. Traveling is very difficult for our daughter so it was not an option. Appeals to Medicaid to make an exception were denied.”
Increase the Number of Autism Appointment Slots
Without enough support or information, patients may experience secondary consequences like medical problems, as was the case with Aaron B in Idaho. His mother Kaija wrote: “Aaron, 26, has to be sedated for any type of dental work. We have one dentist in our community who treats patients with disabilities in the hospital one day a month. The last time Aaron had a procedure done was at the height of COVID. He aspirated and developed pneumonia. Thankfully he recovered. He’s due for a cleaning and we’re dreading it.”
Use Visual Aids
Jeffrey W, from Oregon, is autistic and has had positive experiences with his dental issues. “During a tooth extraction, they let me use a handheld mirror to observe the work they were doing since I have a lot of anxiety about unfamiliar touch. Maybe a little more unorthodox than people would want but she didn't blink.”
Cater to a Wide Range of Patient Preferences
Phyllis F, from New York, gave multiple examples of how her deaf and autistic daughter worked with the dentist to accommodate her particular likes and dislikes. “When my daughter was young, we were fortunate to find a caring and patient pediatric dentist. He had a jungle-themed office with video games, books, a Lego board, and even a slide in the waiting room. We'd get the first appointment of the day when everyone was fresh. He would demonstrate each procedure before doing it, ask what flavor toothpaste she wanted by writing to her, and give character toothbrushes and cute stickers for good behavior.”
Be Humble and Listen to Caregivers
Peter W, Massachusetts: “CJ requires heavy sedation for any dental procedure and there are two specific doctors I am willing to wait for at Franciscans because they allow me to physically put him on the table and bear hug him gently while he receives the anesthesia. CJ cannot awaken with an IV or he will pull it, so we fast-track everything that is safe medically. The car is pulled up to the front after vitals are ok. We have even left once or twice in a johnny! After that, they even helped me dress him while still under to preserve his dignity.”
Seek Out Autism Professionals Along With Caregivers
Dentists can harness the expertise of autism specialists for extra support. Sherrill D, an autism mom from New Jersey wrote:
"There was a dentist in our town who was friends with one of the autism teachers, and he kept a dental chair at our school. He would come in once a month and all the kids in the elementary-age autism program would take turns sitting in the dental chair so he could "count their teeth." This was his way of de-sensitizing them to the chair and to a dentist looking in their mouths. If they allowed him, he would brush their teeth.
As our son got older and needed X-rays and fillings, this dentist had a few tricks up his sleeve: he worked with the autism teacher to practice with our son to bite on a piece of a popsicle stick, and they timed him. Got him to hold it in his teeth for 10 seconds! In this way, the dentist was able to take X-rays. He also had his autistic patients wear dark sunglasses like cataract patients wear—the wrap-around kind. In this way, they didn't see the numbing gel or the needle coming. It also shielded their eyes from that bright light dentists use. This dentist, who has become a part of our lives, is a general family dentist but he has made the effort to learn about autism and is so helpful!! We are very lucky to know him."
We feel lucky to have had kind, respectful, and accommodating dentists for all of Nat’s life. But this has taken a lot of preparation, monitoring, extra visits, and compromise. Now that he is moving into his mid-thirties and perhaps more complicated issues, we hope future experiences at this university dental program will not only be successful for Nat but that the staff will learn from us—and most importantly, from him.
