Marina Sarris

Date Revised: June 28, 2023

Karah Manning called yet another dentist on her list. “Do you see kids with special needs?” she asked. This one, like several others, said yes.

Then she asked, “What about kids with behaviors like self-injury? Do you have a separate room and extra staff to help?”

The answer was no, as it had been for the other dental practices that she had called.

Manning’s daughter, Kennedy, now 9, has autism, sensory sensitivities, and behaviors that make a dental appointment challenging. Kennedy is not comfortable in a large exam room, surrounded by other patients, bright lights, the whirring sounds of drills and tooth polishers, and unfamiliar smells.

As the Mannings and others in the SPARK autism study have discovered, finding dental care for children and adults on the autism spectrum can be a particular challenge.

How Hard Is it to Find a Dentist?

According to a 2019 statement from National Council on Disability, “Due to the lack of proper skills among dentists, dental care is often more difficult to find than any other type of service for people with [intellectual and developmental disabilities].” In one study, many dental and medical school deans said their graduates were not prepared to treat people with developmental disabilities, the council said.¹

Until a rule change in 2019, accredited dental schools in the United States were not required to teach their students how to treat patients with developmental disabilities or special healthcare needs. Dental schools have changed their curriculum for new dentists, but dentists who graduated before the rule change do not have to receive such training, explains Samantha J. Yineman, D.M.D, M.P.H, assistant director of the Special Care Clinic, Arizona School of Dentistry and Oral Health at A.T. Still University.

Regular dental care is especially important for children with autism. They have more difficulty with tooth brushing, a risk for dental cavities, than typically developing children, according to pediatric dentist Meelin Dian Chin Kit-Wells, D.D.S., of the University at Buffalo School of Dental Medicine.²

Brushing and flossing, whether at home or a dental office, may be uncomfortable for autistic people who are very sensitive to taste, smell, and touch. The open design of many dental offices ─ in which patients receive care in a large room separated by dividers ─ may irritate people who are sensitive to sights and sounds.

“At the dental office, we have something that can aggravate almost every single sensory system. I can see why a lot of our patients are hesitant to come in because there are so many unfamiliar experiences all at once,” says Yineman, who treats adults with developmental conditions.                                                                                                                                                                                                                                                                  

What Can Dental Offices Do to Help?

Making patients more comfortable in the dentist’s office is a goal of groups such as the American Academy of Developmental Medicine & Dentistry (AADMD). This group works to improve the healthcare of patients with developmental and intellectual disabilities through training and advocacy.

According to Yineman, and videos by the AADMD,² dental offices can use different strategies to help patients with autism and other conditions. They can:

• Make sunglasses and noise-cancelling headphones available
• Avoid light touch
• Provide fidget toys as a distraction
• Use flavored toothpaste and gloves if a patient prefers them
• Explain everything that will happen using the “tell-show-do” approach.

With tell-show-do, for example, the dentist tells the patient that they are going to use a suction device to remove water from the mouth. Then the dentist shows the patient the device, turns it on, and touches it to the patient’s hand. The dentist then puts the suction device in the patient’s mouth. Like activity schedules often used in schools, a tell-show-do approach can reduce anxiety by preparing people for what will happen next.

Some dental offices may allow a new patient to tour the office, either in person or by watching a video, before the first appointment. “Our primary goal is for our patients to associate their visit with a positive experience,” Yineman says.

For many patients, these techniques can help dentists avoid the use of sedation for procedures that do not typically require it, Yineman says. “Sedation is a last resort,” she says.

How Can You Find the Right Dentist for You or Your Child with Autism?

Some dental schools have clinics for patients with disabilities and complex medical conditions. The schools may also know about other local dentists who specialize in treating these patients. The Special Care Dentistry Association maintains one list of dentists who treat people with developmental or medical conditions.

You can also ask your healthcare providers, local autism organizations, the Special Olympics, and friends for recommendations. “Keep asking until you get the answer, because sometimes it just takes asking the right person in the right moment,” says Karah Manning, the parent who tried cold-calling dentists.

Manning finally got the name of a dentist for Kennedy while visiting her daughter’s preschool class. The special education teacher had a folder with an advertisement from a dentist who treats children with developmental conditions. Manning was so excited she interrupted the teacher to ask about the dentist, located in her North Carolina community.

She called the dentist’s office and spoke with the office coordinator about Kennedy’s behaviors and needs. That happens to be exactly what some dentists recommend.

Along with medical history, tell your dentist about sensory sensitivities, behaviors, and communication needs, Yineman says. “It’s important as a parent or a person with a disability that you disclose everything to your dentist because you want to make sure they’re the right fit for you,” she says.

Tailoring the Dental Experience to Each Patient

Manning says that Kennedy receives dental care in a separate “V.I.P room,” where she can listen to music or watch a video. The dental staff put extra padding on the exam chair to protect her from banging against a hard surface or grabbing a sharp instrument. The dentist and assistants work quickly to look inside her mouth and take x-rays, if possible.

Every two years she goes to a hospital to be sedated for a deep cleaning of her teeth, which is not possible in the office.

Just as autism affects each person differently, their accommodations in the dental office may differ, too. When she was a young child, Kaylee Lurvey did not like the reclining dental chair. Her dentist allowed her to sit in her mother’s lap or a regular chair for appointments, says her mother, Candice Lurvey, who participates in the SPARK study with Kaylee.

To make dental instruments seem fun, the staff gave them names, such as Mr. Squirty, the device that sprays water. Now 16, Kaylee feels comfortable in the dental chair. She is also starting to tolerate the vibration from the tooth polisher, Lurvey says. When she needs deep cleanings, x-rays, and fillings, Kaylee has to travel to a hospital an hour from home to get anesthesia for those procedures.

Another Potential Barrier, Especially for Adults

As children on the spectrum become adults, they may face another potential barrier to dental care: insurance. Many autistic adults rely on Medicaid, a government health insurance for people with low incomes and disabilities.

The federal government requires Medicaid to cover dental care for youth through age 20, but not for adults ages 21 and older. Each state decides whether its Medicaid program will pay for dental care for adults, and what it will cover. Less than half of the states provide comprehensive dental insurance to adults with Medicaid.³

According to one small study, one-third of autistic adults saw a dentist yearly.⁴ Two-thirds of adults in the general population visited a dentist in the past year, according to government statistics.⁵

Despite various challenges, many autistic adults go to great lengths to see a dentist, especially when they live in rural areas. When she was in high school, Yineman worked for a pediatric dentist in her small hometown in North Dakota. He held clinics for people with disabilities, one of the only ones to do so at the time, she recalls. People would travel in vans for hours, coming from as far away as Montana, Minnesota, and South Dakota, just to see him, Yineman recalls.

When Yineman was in dental school, she found herself drawn to the same kind of dentistry. “This is how I want to spend my time because it’s where the need is the greatest,” she says.

Watch a free SPARK webinar with Yineman about “Autism in Dentistry: The Spectrum of an Over-Sensory Environment.”

Resources

• View the SPARK webinar Autism in Dentistry -The Spectrum of an Over-Sensory Environment.
• Read Ten Tips to Prepare Your Child With Autism for the Dentist.
• Download dental care guides for families, autism providers, and dental professionals from the Southwest Autism Research & Resource Center.

References

1. National Council on Disability website. Accessed May 25, 2023.
2. The AADMD Video Grand Rounds. Accessed May 30, 2023.
3. U.S. Department of Health and Human Services website. Accessed May 30, 2023.
4. McNeil R. et. al. Spec. Care Dentist. 43, 3-8 (2023) PubMed
5. National Center for Health Statistics website. Accessed May 25, 2023.