Oral Health for People with IDD: Beyond Autism and Down Syndrome

If you ask most people to name an intellectual or developmental disability, they'll likely mention autism or Down syndrome. These are among the most widely recognized conditions, but focusing on them alone can cause us to overlook others that are similar to those we're familiar with, such as cerebral palsy, fragile X, fetal alcohol spectrum disorder, Williams syndrome, or Prader-Willi syndrome.

For many people with IDD, dental problems don’t come from the disability itself. They come from barriers: difficulty with brushing and flossing, medication side effects, and care that isn’t built around how a person communicates. Spotting those barriers is the first step toward closing the gap. There is a whole other list of conditions (cerebral palsy, fragile X syndrome, fetal alcohol spectrum disorder, Williams syndrome, Prader-Willi syndrome, and so many more) that can be living in a type of blindness-inducing shadow.

For the rest of us, oral health is often a secondary concern, and it's hardly ever related to our disability. No, it is the physical barriers to self-care, the side effects of medications we are yet to take, and the fact that our health service can't decipher what you are saying if we can't seem to get our words out. Identifying the problem is the beginning of bridging the gap.

The Physical Side: Motor Control and Tone

Almost every intellectual and developmental disability is at least a little bit motor involved. (Think muscle tightness in cerebral palsy, muscle weakening and stretching in Prader-Willi, and fine motor skill delays with many other syndromes). Brushing and flossing seem like simple everyday tasks, but you wouldn't believe how much coordination it takes to grab the brush and keep it at the perfect angle, press with just the right amount of force, and effectively clean every corner of the mouth in only two minutes, twice a day, without forgetting a spot or flinging the brush across the room. 

For the hands that don't do what they're supposed to do, that's a grueling daily grind, and plaque will be filling those spaces. Swallowing challenges, which also occur in cerebral palsy (CP) and a small number of other diagnoses, add yet another one. Some people hold food in their cheeks instead of swallowing, which leaves sugars and starches sitting against the teeth for hours. Just so you know, it's not a good place to stash food; it's nothing personal, it's just not the body you have.

The Unnoticed Side Effects of Medications

Seizures, spasticity, anxiety, and mood are among the most common medications used in the individuals with IDD. Though medication can make your life much easier, at the same time medications can also cause oral alterations, which may not be very clear. Reduced Concentrations in the Blood of Some Anticonvulsants: If you are on a medication called phenytoin (Dilantin), it may cause some of the gum tissue to swell and reach over some parts of your teeth, causing gingival overgrowth. The extra tissue creates pockets that trap plaque, making it very hard for your toothbrush to clean away.

Dry mouth is pretty typical too. Saliva rinses food particles from the teeth, controls the pH of the mouth, and enables regeneration of damaged enamel. That's why the dentist has to be included in your loved one's team of caretakers – not just a once-in-a-while visit. When the dentist knows what drugs your loved one is taking, he can watch for predicted side effects, change your loved one's cleaning schedule, and recommend fluoride or saliva stimulators. 

Your caregiver may bring an updated medication list to dental appointments and let your dentist know about any new medications or dosage changes. You can always talk to your prescribing physician if you experience any side effect that alarms you before adjusting any medication on your own. 

Communication, Sensory Needs, and Trust

Most dental practices do not fail because they refused to try, but because they settled on the standard-care model. That approach works well if you can sit still for your entire appointment, sit for hours with brightly lit, noisy tools in your mouth, and deal with dozens of new sensations. 

The first problem is communication. You may not be able to say things as you normally would, speak more slowly, or find it more difficult to communicate that something is painful. If the dental team does not recognize the signs, such as body language, facial expression, or changes in behavior, you may have pain or discomfort, but the team will not be aware of it.
The second challenge is sensory sensitivities. The grind of a polishing paste, the blast of a drill, the glaring overhead light, and the feel of your face being touched with gloved fingers can be loud and bright and scratchy, all at once.

Special needs dentistry starts at a different point. Rather than asking the person to adapt to a standard procedure, you adapt the care to the way the person communicates and how they perceive their environment. In practical terms, this could be longer appointments to allow time and avoid rushing, quieter waiting areas with dimmer lighting and smaller rooms, a visual schedule showing what is happening next, a 'tell, show, do' where the dentist explains and demonstrates with equipment prior to the procedure, and shorter early visits to familiarize the environment.
Trust requires a number of visits to build. The more comfortable someone is, the more comfortable his or her next visit is and the more comfortable the visits after that will be.

Why the Gap Persists

This is not small potatoes, nor is it unusual: people with intellectual and developmental disabilities (IDD) experience much higher rates of oral disease than the general population, and those problems are much more strongly linked to barriers to appropriate care than they are to the disability. Still, for many families, finding a provider who’s comfortable and ready to work with that population is hard even in a major city.

Many families are living with what advocates call a growing but seldom-discussed oral health crisis, and most people outside this community have never heard of it. Here, too, the emotions come into play and rarely is it only the patient who suffers. Anyone who has had a difficult appointment, gone into the waiting room to calm down, or watched a hasty exam that does not really accommodate their needs understands the reluctance to do it all again, and there's a very good reason to feel that way. The reluctance is the natural reaction to a hard experience, but it also creates a situation where we leave care on the back burner until someone makes the effort to call us again.

Putting off a visit tends to make the next one harder, but finding a new dentist who is willing to see past the diagnosis and meet each patient where they are can change that first visit entirely. For families and caregivers who have experienced setbacks or simply taken a break from care, it's reassuring to know this care is out there and that it often just takes a little willingness to look outside the box.

Finding the Right Fit